Order and Chaos

Temper and meltdowns

2012-02-01T07:29:00.000-08:00

In the last year J has:

Slammed his door numerous times with such force that the door frame is coming away from the wall! I am considering thre advice of the SENCO to "take the door off"!

Threatened to jump out of the upper window several times and sat on the windowsill, it's winter and the windows are locked but in the summer this is more scary as they are usually wide open.

Damaged his Nintendo 3DS by jumping on it after becoming frustrated by a game (my fault as I was in the bath and didn't realise he had it).

Banged his head during numerous meltdowns and hit himself.

Last week he took a knife from the draw mid meltdown and told me "goodbye Mum" (I got it away from him).

J's school are going to offer support - he is more manageable there with one to one support but less so here at times simply because I struggle to keep on top of everything (crap mother alert).

So I am hoping for a CAMHS referral and help to manage his extremes of behaviour because I feel in the dark when it comes to these meltdowns. Do I ignore them? Do I stay with him? Do I try and cuddle him to reassure which would not be easy?

J's Dad feels that J reacts if I am there but all I can think is that being that out of control during a meltdown must feel terrifying and because of that he NEEDS my presence as a safety net.

All in all I am anxious about his teenage years.

Melatonin and sleep.

2012-01-20T02:03:00.000-08:00

When J was a baby I had the bizarre notion that I would not give him medication unless absolutely necessary. It is a measure of how far I have fallen from my principles that I bit the paediatrician's hand off when he suggested we give a trial to Melatonin in order to see if this would help with J's sleep issues.

J can be awake until the wee small hours with ease, he finds it extremely hard to settle down at night and we can still be going at 01.30am on a bad night. A recent holiday with his Dad and grandparents saw an even later 2am before he fell asleep. Not surprisingly I am often exhausted - not least because I need to be awake too as J also LOVES food and thinks nothing of climbing onto work surfaces in order to reach any goodies which might be on the top shelves. The idea of an overtired kid with balance issues (dyspraxia) climbing any height does not bear thinking about. I am amazed that we are not regular attenders of them local A+E department.

So we now have Melatonin 2mgs for J to take an hour before he falls asleep and although it's early days it seems helpful. The first night J took a tablet he fell asleep next to me at 8.45pm and I was in shock, J was under 2 the last time he fell asleep this early. I literally did not know what to do with myself and phoned friends and relatives...."he's asleep...can you believe it"? No they could not either....

So since that first night it has been hit and miss and very dependent on how tired J is that evening. He is still waking to bedwetting but is settling down almost as soon as he is changed. The latest night we have had since he started Melatonin is 00.15am - a vast improvement upon 2am!
So I am going to continue, I have been warned that he cannot take this drug forever and that it's effects may wear off over time but for now I am going to enjoy it and love the idea that on some nights J is getting adequate sleep.

Disability Living Allowance and the Welfare Reform.

2012-01-17T10:10:00.000-08:00

Like many other parents of children with a disability I am anxiously watching the news with regard to the proposed benefit reforms and the plan to replace DLA.
DLA is not an "out of work" benefit, it is instead a benefit designed to help with the costs of coping with a disability either your own or a dependent's. I have claimed it since April 2009, just after J was diagnosed with ASD. I knew about DLA but had never considered claiming it for J although it can be claimed even if there is no diagnosis. My decision to claim came from the paediatrician who advised I do so as there would be cost implications for J both now in the future. I applied and was awarded Middle Rate Care to reflect the fact he needs frequent support during the day and Lower Rate Mobility to reflect his need for supervision by roads - this means I recieve £267 a month for J - a massive help as I had decreased my work hours several months before in order to support J who was struggling in school and at home. In addition I also recieve a top up payment to my tax credit - all in all I was better off by nearly £450 a month. This allowed me to attend various support groups with J and a special needs centre nearby which ran a "stay and play" group.

So what does the DLA and tax credit pay for?

In my house it simply goes into the pot with my salary to pay the rent, the council tax, the electricity, the gas and to fund extra activities for J. It means I can be around for him to offer him the additional support he needs, he has one to one support in school and finds social situations confusing, he would need the same support in an out of school care setting.

I spend time sorting out social confusions with him, I do homework with him and help him with maths, literacy and other topics. J has mild to moderate learning difficulties, he is not achieving on a par with his peers, only since he started taking medication for his ADHD has he been able to make massive progress in reading - it is a joy to hear him read to me with real meaning and comprehension.

The DLA form is massive - a 40 page form which wants to know everything about the disabled person in miniscule detail. Can they walk, can they talk, do they need supervision, can the disabled person wash and dress themselves or do they need help? What help does the disabled person need? Is it simply supervision and routine or do they need total support? How long does this take in minutes, how many times per day? What about night time? Does the person need support and supervision at night? Who is the GP, who is the Consultant, who can DWP talk to if needed? Can they have the medical records?

The form is so complex that organisations such as the CAB devote time to helping claimants complete the form. J's initial award ends in March this year and the CAB have just help me complete a new one - due to J's sleeping issues and night problems such as bedwetting the advisor said that I should be receiving Higher Rate Care which is a measure of how bizarre the current reforms are. If I receive Higher Rate Care I will be immune from the cuts as carer of "one of the most disabled in society". In fact Higher Rate Care simply reflects the claimants input overnight - a child could be severely physically disabled and yet sleep all night with no issues making them non-eligible for Higher Rate Care - it's utter madness.

So the cuts, ah yes the cuts! As of April 2012, if the reforms go through as the Government wants them to then those on Middle Rate Care will no longer recieve the current level of tax credit top up, it will halve making the average family caring for a disabled child just over £1440 a year worse off. Those receiving Higher Rate Care will see their level of top up to the tax credit increase - remember that to qualify for Higher Rate Care the child simply needs to have supervision and care requirements at night time. In my case it's the fact that J can keep going until 1-2am in the morning and active until about 30 mins before - yet this could make him elgible for Higher Rate Care payments and deemed one of the "most disabled in our society".

There have been massive protests about the reforms as applied to disabled people and finally it appears the protests are reaching the Government - and they are not happy. They are hitting back in turn but it's definitely got them talking - even if I largely disagree with all they say as do many others.

I currently await the response to my latest application for DLA on behalf of J and this time if they award less than Higher Rate for the Care component I will be asking them to justify their decision in writing - under current guidelines J meets all the requirements. In the meantime I will keep writing to my MP and pointing out the issues with the reforms. DLA definitely NEEDS reform - but not in this way and the Government need to return to the table and talk to all the disability groups whose comments have been falling on deaf ears for far too long.

First Reconciliation

2011-12-03T13:29:00.001-08:00

Today J made his first reconciliation - that's "confession" to anyone not Catholic. It is much less austere than it sounds and merely involved J having a chat with the lovely FrB about something he wanted to say sorry for. First though we needed some "getting in the spirit" of things which is where Fr B often comes into his own - and today was no exception!

So we had The Parable of the Lost Sheep and Fr B ever a performer announced to the waiting congregation that he and SrC had gone into buisness together as "sheep farmers"! Apparently they had a "small flock" of about six sheep in the garden but...one of them kept wandering off.

There then followed a small session with the children suggesting ways in which the sheep could be found before FrB said that in fact the lost sheep was in the church and could the children find it. Everyone looked round and high up on the mezzanine level was a cardboard cut out of a sheep with a sad looking face. A "shepherd" was dispatched to fetch the sheep back down to rejoin the flock, and by the time it reached the front of the church the "sad face" had been replaced with the attachment of the cheesiest grin you have ever seen - the illustration above is the nearest I can get to it but it tickled J who spent the rest of the service giggling whenever he looked at said sheep.
There then followed discussion about the significance of this story and Jesus being called "The Good Shepherd" who would never turn away anyone or judge them but simply welcome them back.

J's "confession" is private so I won't repeat it here but I know what it is and I am proud of him for finding the strength to talk about it. Last week he had to write down what he wanted to discuss and took this with him to see the Priest. After the children had been up there was a public shredding of all the "confessions" to signify absolution - I guess fire would have been too risky on health and safety grounds. I like the idea of "getting rid of old problems"and recognising that although they may still be things we need to work on, we can learn from experience and spend time trying to be more mindful.

After J made his first reconciliation I decided to make mine - not being Catholic I have never done this before so it was a first for me too. I had a lovely chat with another Fr who was really great and very sensible regarding what I wanted to share. After this I prayed with him and left feeling much calmer - J was incensed that I had been such a long time - who knew I'd been so bad lol.

Fr B then ended by producing his own confession - an A4 sheet of paper covered with typed comments - he reminded the children that he also got things wrong at times.....then opened up the A4 page to show it covered 5 A4 pages taped together - it was as tall as he is. J thought this was very funny - likewise he was encouraged to shred the "confession" and "let it go" after which he did a lap of honour to great cheers around the church!

It was lovely and I have sent an email to Fr B to say a big Thank You for making it all such fun and appropriate to the ages of the children. I said a special thank you for his understanding of J and accepting that he might need extra support.

Lovely day.

Sense and Sensibility!

2011-11-30T10:39:00.001-08:00

Thank you to my lovely GP for her ever so logical advice and support

"No don't resign from your job, it might be the right decision long term but don't do it while you feel like this"
"Get some advice from your Human Resources department about various types of leave".
"No I understand that you don't want to be the person who is always off sick but this is why you need advice from your HR and a look at how you would manage financially if you did leave work for a period of time".
"What you need is some breathing space while you look at your options".
"I think increasing your hours is not something you can commit to given the needs of J for care".

So I came away feeling more settled, she is quite right in saying that NOW is not the time to be making any decision about resigning or not - even if resigning DOES turn out to be the right thing for both J and I.

As far as J goes there have been more difficulties, primarily it seems to boil down to the level of work expected from him now he is in Year 4 and I will have to go in tomorrow morning to have a chat with his lovely LSA who is so good with him to see if we can find a way through this between us all.

It has all been very demanding emotionally for J and I am starting the process of looking at future schooling once Christmas is out of the way.

The schools I will be looking at initially are the senior school which J's school feeds into, it's mainstream and small for a secondary. If J was to go here then he would attend with many children he already knows. My only concern is that as time goes on he will become socially isolated among his peers.

The other school I will look at is a non mainstream school which has been suggested as suitable for J, this is a special school which takes children who have various forms of learning difficulties. It is smaller than the mainstream school and has a higher staff to pupil ration along with extra input from various professionals which the meainstream schools just don't seem to get. On the negative side, waiting until Year 6/7 to try and get a space for J is not really an option as it will be oversubscribed by then so if J's future educational and social needs are to be met there then I need to prepare for moving him at the end of Year 4 or 5 and NOT wait until Year 6 when every other child with SEN is also being put forward.

Of course the best preparation for life in mainstream society is a mainstream school, however if J is likely to experience social isolation there then he might well do better attending a special school and building up friendships with children who have similar issues to him.

It's a big decision and until I look round to see where J might best "fit" then I will be mulling it round in my head.

J just keeps saying "I want to go to another school" but this is due to his current difficulties with Maths and I think if we can sort that out then he will be happier again.

Advent and all that....

2011-11-28T01:15:00.001-08:00

So we are rapidly approaching Christmas and I am at a crossroads with regard to how I tackle the next year with J. As my recent posts have shown, J is experiencing some real difficulties at the moment and as a result so am I. My depression which was under control has raised it's head once more and keeping a positive outlook is hard. I have reached the stage where somethiong has to give and I suspect that what will give is my job. I only do 15 hours a week anyway but even that seems like just one more thing to achieve on top of being a good enough parent to J and keep a routine for housework going. I have always felt that J shares traits with me and feel I am probably on the autistic spectrum myself. Having said that, I am extremely disorganised (ADD?) and would thrive if I had a routine I could follow religiously every single day. How to get that routine is beyond me though and all I can see as a solution to all this is to stop working and make J and the house my job for a few years while I sort all this out.

I am constantly exhausted with sleepless nights, sleep apnoea when I do manage to sleep and the late nights of J. Consequently finding a way of getting organised into any sort of routine is beyond me much of the time.

I have made a list of the pros and cons of my life with work and without work which was helpful but depressing at the same time. The Pros being that I love my job, that it gives me time to be myself and do something for myself. It also gives me a lease car which is due back in December and the (a negative)refusal of a new vehicle unless I increase my hours which initially I felt I could do. The negative aspects of working are that I am around much less for J in my mind which is already scattered and disorganised. Ironically I am probably worse off financially IN work than I would be out of work. I already find my life hard to organise with J and work is an added stress for me as I worry constantly about missing anything due to my tiredness.

All in all I seem to have made the decision in my head that I will have some time off and am already trying to decide how I will word my resignation letter. I know my manager will not wish to lose me as we are already shortstaffed but I have no desire to be the person "always off sick" either so unless they can agree some parental leave then I am out of there.
How I will cope without a car is scary but I will sell my iPad and start a car fund, as long as I have something to get me from A to B then I can cope.

Tonight I discuss it all with my GP who is logical, sensible and lovely, and at the moment these are the qualities I need.

Annual Review for Statement of SEN

2011-11-21T15:38:00.001-08:00

So we had the first annual review today since James' was first given the elusive Statement of Special Educational Need. There were positives and negatives as I knew there would be and a long discussion about the difficulties James currently faces in school. Academically he has done well and progressed beyond all expectations in both numeracy and literacy. At the age of almost 9 he can now read - hesitantly and with lots of pauses but a world away from where he was a year ago. Thank you Mediknet for the change there.

On a negative note J's Personal, Social and Emotional development has not progressed and his attainment there is still measured in P-scales (recorded when a child is still working towards National Curriculum level 1). Although this was not a surprise to me given J's recent difficulties, it was still hard to see written in black and white.

We discussed J's ability to remain in mainstream education right the way through his school years and like everything else there are fors and againsts. On a positive note he is achieving academically now and remaining in mainstream education with children who do not have his difficulties will be excellent preparation for life in a mainstream community as an adult.

On a negative note there is the risk that J will become more isolated with time as the gap continues to widen between him and other children of his age. Currently he has many friends in the playground but generally these friends are girls. The girls (and especially his close friend M) tend to mother him and he thrives on this. They also invite him to their parties while the boys do not - this is good but there will come a time when inevitably the girls will cease to invite him as well. If this is to be the case then an education in a non-mainstream school geared up for children with ASD and co-morbid conditions might give J more social contact.

Thankfully it is a year before I will need to really consider this and in the meantime I have been encouraged to visit the secondary school which J's primary one feeds into and also the two local special schools which would see him through to age 16.

It has all left me feeling both positive and also a little sad. Without a doubt J is struggling at the moment and although I would not swap my lovely, funny and special little boy for anything in the world, there are times when I wish I could take away the difficulties he has, remove the autistic brain which makes his life hard and replace it with a neurotypical brain which would allow him freedom. But then I guess J would not be himself if that was to happen and I love him as he is -I just wish his life was easier for him, I wish the labels didn't itch, the noises didn't distress, the changes to routine didn't upset. I wish he could settle in the evening and fall asleep with ease but that's just not how it is and all I can do is find the right support to help him cope with these things.

So onwards and upwards, a CAF to be completed, the Aiming High for Disabled Children service to contact and a major strop to be had with the PCT which after a year and a half STILL has no real Occupational Therapy service for autistic children with sensory issues despite letters promising parents that this was being developed.

Watch this space.

Rages

2011-11-19T00:37:00.001-08:00

So life continues to be a mixture of fun and stress here inthe O&C house. J is continuing to do well on his Mediknet and his readingis now progressing rapidly.

On the other hand some things have not changed - least ofall J’s rages which are prolonged and worrying when they occur. I canrationalise the lack of social communication skills but it’s still hard tomanage and both J and I are usually exhausted after such incidents haveoccurred. In addition J is usually very distressed after any rage – herecognises he has lost control and it scares him. We continue to work on thiswith various resources and have identified the things which most set him off(frustration, fear, anxiety) and are beginning to work on things which mighthelp. Although I do not believe insecond guessing any child I must admit to feeling some trepidation about histeenage years!

J’s rages are not daily occurrences however, I long ago tookthe view that if what he was doing was not actually harmful to himself, othersor property that it was easier to let him get on with it and learn fromexperience than face the inevitable rage which occurs if he is stopped. Thismakes it sound like I sit back and allow him massive liberties and maybe to acertain extent I do, but it’s an action designed to help ME cope with his dailyneeds and to cope with HIM!

On the whole J is well behaved and when medication is usedcan be quiet and able to focus on an activity for 30mins or more. He has neverbeen badly behaved in school - to theextent that the teaching staff doubted he had ADHD (prior to diagnosis),however, with medication once he was diagnosed, his level of achievementincreased beyond all expectations, he can now read – hesitantly and unsure butit’s a world away academically from where he was a year ago.

It isn’t easy though and there are times when I have tophysically remove J from rooms (or physically remove objects from him) when hewill not listen or stop what he is doing. Times like this usually end with J stampingupstairs to his bedroom and slamming his door as hard as possible, the door frameis coming away due to this behaviour. It’s at times like these when I think I cannotcope with the combination of J, with the house, with work and it can all feeloverwhelming. Sleep continues to be an issue and despite everything it is stillafter 11.00pm before J falls asleep at night – on bad nights I can add an houror two to this.

So, on 31^st October J left school and announcedwe were “going trick or treating”. In actual fact we were NOT doing this as Ihad a meeting to attend which I could not miss. In addition we have never donethe whole “Trick or Treat” thing as the first five years of J’s life were spentin Somerset in a house 2 miles from the nearest town. It’s just not something Iever got into with J and consequently it never crosses my mind. J has neverasked to take part in this ritual previously so forgive me for not havingthought about it!

J did not take the information that we were not “trick ortreating” well and began a massive rage which lasted for the next 2 hours onand off. He screamed, he raged he shouted, he lashed out, he kicked the glovecompartment of the car hard and to be honest it was hard to drive safely. Indespair and because I was at a loss I drove to my Mum’s for support with J, bythe time we got there he had calmed down somewhat but still blew up on and offand indulged in a spot of head banging which he still does from time to timewhen he can’t cope.

It turned out that the rage had started in school with “tagrugby”, which needs a certain level of coordination which J does not possess,it continued into Maths (new class, new group, different teacher) and even hislovely LSA Sally could not reach him through his mood. I merely added to itwhen he left school, in his mind we were going trick or treating and Mum wassaying “actually not”.

One of the hardest things to know with J is when his behavioursare due to his ASD or if he is simply playing me up. In an attempt to try and be understanding, Ioften end up giving him the benefit of the doubt about some actions and hedoesn’t always deserve this. So I could accept his frustration anddisappointment about NOT “trick or Treating” I could accept that he found itdifficult to express these emotions in a more acceptable way and yet part of mefelt he was simply behaving very badly.

So – he rages.....and he is getting bigger.....and I amworried...and I am exhausted with the late nights, the lack of sleep and thedifficulties in managing J as a single parent. This weekend his Dad is here andI am grateful but they have already clashed. M had said J could sleep in withhim but lost all patience with him when he was fidgety and giggling at 10.30pm,the upshot is that J ended up in MY bed once more. Things have to change and Ineed help with J – proper help and not just a list of local support groups.....

We all know someone who could work but chooses not to - don't we?

2011-11-13T10:26:00.001-08:00

The post below is taken from "Diary of a Benefit Scrounger" and it's powerful stuff so I am reproducing it here

Well, there's that Jim at number 27. Have you seen his garden?? Out there all weathers he is. It's like the bleedin Chelsea Flower Show. Now you can't tell me he couldn't work?

Jim is 62. He has epilepsy. He was born with it and back in the 50s, most people still thought you were possessed or evil if they saw you having a fit. His mother never used to take him out for fear he would have a seizure in public. He's never been able to drive. He gets "warnings" before the 4 or 5 seizures a week he has, allowing him to get inside to somewhere safe. No-one ever sees his disability - he wouldn't dream of talking about it with a neighbour. He still never leaves his home. The shame he grew up with never really left him. His garden is his life. It gives him joy and purpose. Somewhere beautiful where he never feels lonely or ashamed.

It's just got ridiculous! There's this girl in our village - never done a day's work in her life....and she jogs!! Hours she runs up and down with those earplugs in, round the village, out on the quiet country roads, sometimes she goes out in the morning and she runs til lunchtime!! Why should she get my hard-earned tax money just to do nothing?

Laura is 26. From the age of 6, both her uncle and his friend used to sexually assault her. She never told anyone, they said they would do it to her brother if she did. As she grew up she became more and more withdrawn. Sometimes they hurt her physically and she had to try to hide the bruises away. She never made any friends and ran away from home when she was 15. Living on the streets, people took advantage of her and she soon became a prostitute with a crack habit. At 18, she managed to get a place in a hospice and with the amazing help of mental health workers, counsellors and a safe environment, she got clean. She moved away, moved to a nice safe village, kept working on her past and found solace in running. All the time she runs, music pounding in her ears, she can forget. She feels free and alive. She has managed to start volunteering in a local centre working with other young people who've been through what she went through and hopes that one day, she might be able to make a career of it. She has never spoken to any of her neighbours, she's still too damaged, and she certainly wouldn't tell them about her childhood.

Do you remember Doreen? She never stops that woman, out at work all hours, looking after the kids, running em here and there. And all her husband ever does is lie around on the sofa watching daytime TV! 16 years it is since he worked! The man must have no shame.

Karl served in the army for years. He lost many good friends. One night, just after midnight, he and his men were taking cover behind an old burnt out coach. A bomb suddenly exploded and every last man but him got blown to pieces. He was taken away and held for days with little food and light. They questioned him at gunpoint until he soiled himself, then left him sitting in the mess. He saw women raped and children left to die at the side of the road, their eyes pleading with him as he marched past. Since then, he's suffered from Post Traumatic Stress Disorder. He has terrible periods of depression, flashbacks, sweats and night terrors. He can't sleep and when he does he wakes up screaming. He barely pays attention to his family, and though the television might be on, he never sees the programme. He only sees one programme now, running through his mind every minute of every day. He makes Doreen promise she won't ever tell anyone what he goes through. She wouldn't dream of talking about it with her neighbours.

*****************

The BBC seems to be running a "Scrounger" season. You are being asked to judge our social security system in a flurry of documentaries, based on anecdote. A GP who "feels" it's unbelievable that we have so many people on sickness benefits, random women in the street who share stories like the ones above. No evidence, for the evidence is most certainly not with the programme makers. Rather they feed into a stereotype that is being used comfortably by all main political parties and the media to push through welfare reforms. We already have one of the toughest welfare systems in the developed world with the toughest sanctions and among the lowest rates of fraud. But you will never hear that from these documentaries. You almost certainly won't believe it now, but it's true. Pesky evidence. No. These "documentaries" ask you to ignore the stories that make up the person and simply judge your neighbour. Nasty eh?

The Chief Litter Picker of Holy Trinity Church

2011-08-28T10:58:00.000-07:00

The Badge!

Last week when I attended Mass with J, one of the parishioners noted with irritation that there was a large amount of litter on the field adjoining the church. We chatted for a bit about this when J piped up with "I'll help pick it up" and so off he went with one of the older ladies from the church armed with a rubbish bag and a litter picker/grabber device which Sr C had managed to find..
J and his new found friend returned some 15 minutes later with a bag full of rubbish to great praise and applause. J liked this praise and applause very much and decided to award himself the post of "Chief Litter Picker". Indeed J was so pleased with this title that he told everyone who entered the church and had time to listen that he had "a job at the church, I am the Chief Litter Picker" to great amusement and praise. When Fr B arrived he was also told by J that the church had a new employee - Fr B was suitably impressed and praised J for his enthusiasm. "Yes" said J, "I need to have a manager's badge".
So - this week J and his Daddy went into town where a badge was chosen with the words "Chief Litter Picker, Holy Trinity Church", this cost his Dad £10 - J's Dad was not impressed especially as I have a tendency to lose things!
So this week we went back to church, I have never seen J so eager to attend Mass in my life. There he was with his badge in pride of place eager to do his "work" and he didn't mind who knew it. Off he went with Nanny, a rubbish bag and the rubbish grabber to fill up another rubbish bag.

J wears his badge with pride.

Today we had Fr D on duty who was equally entertained by the church's new employee, especially when J returned once again with a full bag of rubbish collected from around the exterior of the church.
So my Mum decided that as a reward, J needed his own Rosary beads, (J still refers to them as "Rosemary Beads") and J chose some from the little shop. Fr D then kindly blessed the Rosary Beads for J and in J's eyes this now makes them very special indeed. I have suggested that he uses them to say special prayers - just as his Auntie Moonroot uses a magic wand. Not being Catholic the Rosary is still a bit of a mystery to me although I am learning - so it'll be off to find something age appropriate for J which might also teach me something too!
The "Chief Litter Picker" is now sat watching Robin Hood on the Disney Channel, meanwhile his bedroom resembles a bomb-site but needless to say he does not see his duties extending here so off I will go shortly to make a start on the Lego which is piled on the floor....I may be some time!

The "Rosemary" Beads

Colchester Zoo

2011-08-27T09:23:00.000-07:00

All cats make "looking idle" an art form and these two were no exception to that rule.

This week J and I visited Colchester Zoo with my friend EK and her daughter E plus her Nanny J. We had an absolutely fantastic day and managed to fit in a remarkable amount of feeds and demonstration sessions thatks to the new Colchester Zoo app which pages you 10 mins before any acvtivity you schedule in. As a result we not only managed to see the Penguin feed but also to take part in feeding the Elephants, Giraffes and Wallabies as well as ride the land train to see some of the shyer creatures which inhabit the zoo such as the Black Backed Jackals.
J and E had a fantastic time and all us adults enjoyed ourselves too - of course no trip to the zoo is complete without photos....

Everyone liked the big tortoise..

J enjoys the penguins

I spent "too long Mum" at the sealion enclosure - sorry J but they are just beautiful

E and J are first in the queue for the "Penguin feed"

EK's friend...who blew her kisses.

We covered most of the zoo in the day we spent there and still did not manage a quarter of the information they had to impart. Definitly a place to visit and then visit again, they are doing fantastic conservation work through the zoo and a huge amount of education regarding animal trafficking, animal mistreatment and the loss year on year of our natural wildlife .... sobering stuff.

Love, Faith and Magic Wands..

2011-08-14T05:07:00.000-07:00

J has recently returned from a fun week spent with his Daddy, Nanna, Bapa and Aunty in both Somerset and Wales. This has been a good week for both J and I as the break allowed me time to get on with some much needed decorating. In addition it also allowed me to spend time with P and take the first tentative steps into a new relationship. P has been feted as "perfect" for me over several months by a mutual friend....all to no avail as my heart has simply not been ready. This changed at the funeral of my friend's partner Dave when I watched P with Dave's youngest daughter S- a heartbreaking and lovely little girl of 8 who like her sister and brothers is missing her Daddy terribly. It is no exageration to say that my heart was touched by how lovely P was with S and so when my friend began her "you are perfect for one another" comments again I agreed to allow her to arrange a meeting of some description, Perhaps I was just ready to move on..... and the break from being Mum for a few days allowed this introduction to happen...so I have seen P twice and we are going out tonight again. Having both had our fingers burned in the past we are proceeding cautiously still but are enjoying each other's company. Time will tell how it will all go.....life is short but there is still no rush, if we are meant for one another then it will happen in it's own good time and P has a lot to think about in this as being with me means taking on J as well who is my utter joy in life.

J has now returned from his holiday and I am so happy to have him back at home and in my arms. I am without doubt blessed to have this little boy, especially as he arrived stacked against all the odds of my infertility and the dire prediction of a doctor that I was "unlikely to conceive naturally". I am happy to have proved them wrong.....

So this morning when I took J to church I said a special prayer of thanks for J's presence in my life and for the daily joy he brings me - even if that joy IS accompanied by a certain amount of stress at times! This would include yesterday when J was in one of his "climbing moods" which culminated in his c limbing 15 feet into a tree before going into utter meltdown when he decided he was stuck up there. Getting through to James and reaching him through these meltdowns is not easy....I am so grateful for the passing dogwalker who had an advantage over me in height! I said a prayer of thanks for him today too!

Towards the end of the church service today, J started talking of "magic wands". Aunty Moonroot has one, he had tried it and what was more, when he is 13 he could use it "if Mummy & Daddy agree otherwise Mum, I have to wait til I am 18". the conversation got quite loud and feeling that talk of "magic wands" might not be appropriate in a Catholic church I decided to sit outside and continue the conversation with J there.

We had a great chat and J understood that Aunty Moonroot's magic wand was not like the wands he reads about or sees in Harry Potter books and films because she had explained this. We discussed the fact that like his Rosary beads a wand was used as a focus for positive and reflective prayer and to offer love and support for others. J seemed happy with this and we further discussed his use of a magic wand at an older age as he was keen to talk about this. I said to J that if he still wanted to look more at this at 13 then he could do so along with looking at other beliefs in life. Being open minded is a good thing and understanding and respecting different belief systems is an important part of learning to respect others. We might see much more love in society if we all showed more tolerance and understanding for the beliefs of others.

After the service I spoke with Fr B the lovely and good humoured priest for his thoughts - we had a nice chat which ended with Fr B glancing furtively round then leaning in conspiratorially and whispering "this ere magic wand of Moonroot's - does it work on the Euromillions"? I suggested this was highly unlikely (I refer Fr B if he is reading this, to my conversation with J regarding Harry Potter and magic wands as above) and I wondered aloud what he would do with such wealth. Fr B had no hesitation "I'd retire" he declared "to live in a beach house in Barbados" .... presumably to live a spiritual life by opening his front door every morning and giving thanks to God for the good fortune and the beautiful beach and sea view in front of him, before relaxing for the rest of the day....now THAT is my kind of priest. A great understanding of the spiritual but human first and foremost...just brilliant and I have giggled on and off all day recalling this conversation.

So - may I suggest to Aunty Moonroot that she gives Fr B "a lend" of her magic wand - like James before him I suspect he may feel some disappointment in the immediate results - pictures don't fly and in all liklihood the lottery numbers will not magically write themselves down but focusing on prayer while holding any object can give a deeper journey into the soul and to the universe and with THAT kind of power anything might be possible.

Rioting, Reasons and Responsibilities

2011-08-12T10:41:00.000-07:00

The UK has recently seen several nights of rioting such as I have not seen since the early 1980s. Shops, businesses, police and family homes have been targeted by the “something for nothing” brigade who have been intent on looting and destruction. These rioters have been filmed with heads covered setting fires, taking high priced electrical goods and assaulting others. They have been a variety of ages from children to adults and I am still trying to shake the gut feeling that some of the children there may have been accompanied by a parent. I hesitate to say parents because without a doubt there will be many of these children who do not have the luxury of two parents at home.

Now that the rioting and looting appears to be over there are no end of commentators trying to find the “causes” of such behaviour and there have been no end of reasons given from the lack of moral fibre in society to the very liberal “poor, misunderstood and marginalised youth” excuse.

Me? I think that there are many reasons but no excuses, children who grow up with no regular father or male role model in their lives but a variety of “Uncles” who come and go. This affects all children but especially boys who benefit from seeing and being able to learn appropriate behaviour from a significant male role model.

Then there are those who have not ever learned to read or write with any confidence – yes there may be a criticism of education here but it’s not difficult to get support with literacy in this day and age – hell they even provide a creche if the learner is a parent.

I cannot shake the belief that many of these rioters had no good excuses – they were there in force, it was available so they took. Yet without a doubt there are many many other individuals out there with the same difficult upbringing who did NOT take part in the looting and rioting and who ARE trying to make achievements in life.

We have a society with a sense of “entitlement”, this is not confined to the poor or any underclass but goes right through the social spectrum to the very rich who avoid their taxes and see no reason to contribute anything to society if they can avoid doing so. Too many people know that “these are my rights” but pay no heed to the responsibilities which go with those “rights”.

I have always believed in the Welfare State being there to support those unable to support themselves financially. In this belief I can accept that there has to be room for those who will never contribute anything and just “take” their whole lives. The key is in keeping those people who will never contribute (and I don’t include those unable to contribute due to illness/disabilities) to a minimum and supporting those who CAN work to do so.

Why then can we not have numeracy and literacy skills being part of a “welfare to work” scheme and becoming a condition of receiving benefits. Part of the responsibility a person claiming benefits should show is how they are making themselves more employable. Obviously there are those claiming benefits who ARE employable and who CAN read, write and who have enough basic numeracy skills to get by. There are far too many though who do not have these skills and unless we tackle this issue, they will continue to be a drain on society.

Or am I wrong?

Freedom for a week.

2011-08-04T09:05:00.000-07:00

So J has left this morning with his Daddy for a week in Somerset with a possible jaunt into Wales and the home of his grandparents planned too. M has phoned to report their safe arrival and the immediate relaxation of J who had plonked himself down on the big squashy armchair and was flicking through the Sky channels in search of something he wanted to watch.

Me? Well I am actually exhausted today. I think it's called "burning the candle at both ends" with a combination of work, catching up with an old friend and then a night of drunken antics with my friend E, who has recently been bereaved by the sudden death of her partner at the age of 47. E needs a project to keep herself going at the moment, I can only think that I am IT as she has been very keen to match me up with single friends of hers for a while and all to no avail as I have simply not been interested until recently.
Anyhow, this project of hers culminated in Tuesday evening with wine (too much), much laughter and to my dying shame a french maids outfit which exposed far too much cleavage. I was dressed as what my mother would call "a wanton hussy" and so drunk I did not care! Actually that is probably NOT a good combo but there we go...alcohol does funny things to people. What I do know is that I have not enjoyed an evening like that in a long while but I have paid for it with the inevitable hangover and the mortification of knowing that photos of me in said maid's outfit exist. Oh dear, oh dear.....

So to today, 48 hours on I am exhausted, admittedly a trip to and from Heathrow airport in the blazing heat did not help matters here but I actually felt fine yesterday - it is today I have paid. And it has poured down today, I got soaked and all I now want to do is wallow in a deep bath, drink tea and fall asleep on the sofa watching a chick flick - preferable with a warm purring bundle of feline contentedness next to me.

Thank goodness tomorrow is Friday and a weekend off beckons....as does decorating the wall which E and I covered with lining paper a few weeks ago.....we drank wine while doing so and the result can be seen as you look along the wall and the work got more and more slipshod - oh dear. Good job I plan to cover all the flaws with pictures and a mirror really. Then I tackle the bathroom and J's room all being well, it will be a boring Magnolia for J's room to start with, he has ideas of a Mario themed room except that getting wall stickers is a nightmare and I may have to get out a pencil, some paint and put on my artistic head....needless to say that bit will NOT get done this week. The bathroom paint is ready and waiting, I just need a few extra bits before I start.

So a free week beckons, but it's packed and I hope to get lots done while J is not here and I will still work but will find time to rest too....somewhere in the schedule.

Hearts, Minds and Feelings

2011-07-31T05:51:00.000-07:00

It has been a few years now since M and I separated due to various issues causing hurt on both sides and I have never felt the need to blog about it before.

M and I still maintain a good (if slightly difficult) friendship which is essential for J. He needs to see his Mum and Dad talking civilly to one another without arguments and recriminations. I think on the whole we manage this well and J has had fun times in the company of both parents.

Until last year I had been under the impression that neither of us had been able to move on emotionally. However, I am now aware from M that he has made attempts at dating other women and had one or two lunch dates. On these occasions his feelings were not reciprocated (their loss ) but it is safe to assume that had they been interested in taking things further M would have moved on. I asked him about this last week and he confirmed that this was the case.

So now I am starting to feel a need to move on albeit slowly. M’s feelings were badly hurt by my leaving Somerset. My feelings were badly hurt by issues which occurred there and which M had never shared with me. It is no exaggeration to say that I felt stunned by what I heard from M regarding one issue and coupled with the other problems it was the final straw. It ruined everything for me with regard to our marriage and I told M this when we went out one evening to talk at the time. I have never been able to change this...I think our marriage was in effect over at that point.

We limped on for a few months before I succumbed to what can only be termed as a meltdown/nervous breakdown (call it what you will). Without a doubt this was one of the lowest times of my life and it was also the same for M. We were both hurt, confused and lacked the ability to tackle this together despite still getting on well. M felt rejected by me, I know this, I felt low, depressed and exhausted all the time. The guilt I felt by my perceived rejection of M has never really dissipated and despite his issue (which predated our relationship by some years) I could not help but feel partially responsible. Even worse I was aware that M still loved me but after all that had occurred I could no longer feel the same way.

I guess that’s the way when any marriage breaks down, you have two people who have failed to communicate fairly major issues which if tackled might have kept them together....and in our case M had lied throughout our marriage with regard to a fairly major issue.

So – we are both moving on, M is looking for a new relationship and has been for some time, he expresses self esteem issues when rejected and needs to accept that sometimes people are just not interested....to take it on the chin as it were and move on... others will be interested.

Me, well I am moving on finally too – it’s been a few years now and I have not dated, have not wanted to date and felt quite happy with my single status. This is now changing....
I am not going to identify M here, he knows who he is and so do I. I'd like to see him happy in a new relationship and I'd like to see him have more of a liking for himself... nothing is more attractive than someone who realises their worth, it's time M realised his despite the difficulties which led to the breakdown of our marriage.

Autism speak

2011-07-28T22:00:00.000-07:00

I love autism speak....J like most children with autism can be very precise and literal in what he says and understands without necessarily getting things quite right. This leads to some hilarious conversations at times - either with J or overheard when J is talking to others.
For example, my mother has practically adopted one of the local priests, he is about my age but has lost both parents. In my Mum's eyes this makes him an orphan in need of adoption - and she wants to adopt! Recently he was invited over to my Mum's house for dinner - an event to which J and I were also invited. All went well - my father referred to the priest as "the parson" (shades of Little House on the Prairie) and also as "the vicar" (actually suspect my Dad may have some autistic tendancies) and J was on his best behaviour.
At around 9.30pm as J, I and the priest left for our respective homes, J shook the priest solomnly by the hand .. "Goodbye Fr B.....and make sure you look after God", and good old Fr B replied with good humour, "Actually J, I am rather hoping God is going to look after me".

A few days later and J's Dad is here with a collection of Dr Who DVDs, now I have a hankering after the ...ahem...talented Christopher Eccleston in the role of Dr Who and requested several episodes from that series including one called "Bad Wolf". J having sat through a few episodes was agog at the "Bad Wolf" one until he realised after much explanation from both his parents, that there was in fact no wolf and the name of the episode related to something else entirely - J was not impressed and showed it by stomping off in a huff.

So - I have to watch what I say.....a couple of years ago on holiday with some friends who had a dog, we stopped to have a good long walk at Maiden Castle in Dorset - this is very windswept, wild and open and I noted with satisfaction that Sancha (friend's dog) would be in "doggie heaven" here. This throwaway comment drew much distress from J, "she's not really going to heaven is she Mum" and a reassurance that this was "a saying" and not meant to be taken literally.....the conversation went on for some time before J could accept that Sancha was not, in fact about to die, but was rather going to have a long and satisfying walk/run in a wide open space.

So we watch what we say and be prepared to explain when we have to....

"It's raining cats and dogs" = "Where Mum?"
"Kill two birds with one stone" = "What? You're joking aren't you Mum? Mum, is that a joke?"
"An apple a day keeps the Doctor away" = (J raids fruit bowl).

J is literal, not overly so and he is able to recall things so that once heard he may well know the next time "that is just a saying".....sometimes he needs reminders but mostly he gets by.
I am proud of him for being himself and for seeing the world in his own unique way...he is special and I never tire of telling him this. .. and I never tire either of hearing how J has interpreted conversations and events because without a doubt he will have seen something which nobody else has...and sometimes that is magical.

Strive for Five!

2011-07-13T02:51:00.000-07:00

J's school has a neat little reward system going where each child is marked out of 5 each half term for a variety of "good" things like attitude, behaviour, politeness and respect for others. At the end of the year the scores are totted up and the points out of 30 is awarded to each child.
Depending on each child's score there is a reward, children earning 28-30 points get a trip to the local activity/adventure park. J has 29 points and I am so pleased with him for showing the world his good behaiour. Who says all children with ADHD are badly behaved ? I'd like to introduce them to my son.

Spiritual stuff and J.

2011-07-06T08:41:00.000-07:00

J has attended a Catholic school since we moved to the town when he was aged 5, the school as I reported in my previous post has been amazingly supportive to his special needs. Although the school is a Catholic one with a Catholic ethos it is far from insisting on church attendance or making children enrol for Communion classes. It is just a nice local school which has the needs of its pupils as the focus for everything it does.
Recently J has started to ask about Communion classes as his friend attends and he wants to go to. As a result of this we started going to church and I have discovered that I actually really like doing so. J is less keen but if he wants to attend the Communion classes then the church attendance is pretty much a requirement. In addition he needs to be baptised too so even more reason for attending church.

What J wants to do more than anything though is ..."take the bread" as he sees others doing. I have explained that this is why he will be attending classes as this will be the focus of them. I asked J if he knew what "taking the bread" meant., "yes" he replied confidently.." it means I can eat it" so not quite got a clear understanding of the symbolism behind it then!
I often wonder when I see the children from "My Big Fat Gypsy Wedding" going off and making their first communion whether they attend any classes or understand the symbolism of what they are doing. It's a big leap of understanding for a child...any child... to have a real understanding of change from the reality of bread to the symbolic body of Christ. Not easy to explain, even harder to understand when you are small and the world is already a bit confusing.

In addition to this we have J's Dad who does not believe in organized religion as such and who finds the recent church attendance all a bit of a mystery. J will talk to his Dad about "Jesus being kind" and his Dad will reply that "Jesus was a good man" without going into his belief that Jesus was just that, "a man" and not wrapped up in all the religion as spoken by the Catholic church. This might be something he will be able to discuss with J when he is older and more able to process difference in belief systems. He knows that his Aunty Moonroot is Pagan or "a witch" as J has heard (he is deeply impressed by this). J also know that his Aunty has a "magic wand" AND "a broomstick" which she assures him she only flies on at night. So we have discussed the different ways people pray but not differences in who they may pray to. Life is already complicated enough without trying to tackle that one yet.

I am rambling a bit here because without a doubt J is enjoying some aspects of the church and finds others (such as Mass) "very boring" as he openly told the priest one afternoon. Thankfully the priest was able to say that he also finds " the Mass boring sometimes" - thank Heaven for a human and normal priest.

So - come September J will start his communion classes and sometime next year will be baptised. I will attend the classes with him both to help supervise and also to ensure J understands what is happening.

In the meantime J says regular prayers, some of which are school taught and others which are ad hoc as he sometimes prays for his hamster who died or for "all the children ill in hospital". I am proud of him for taking it all in his stride, for coping with Mass when the school take him over and for being an angel in Children's Liturgy when it is busy.

Teacher's Strike......

2011-06-30T10:06:00.000-07:00

...or rather NOT in the case of J's teacher who does not belong the the union(s) which are taking action today. J is distinctly unimpressed by this as his class is one of just 3 which have to attend school.
Anyhow the strike and the publicity with regard to teachers has got me thinking about things. I am not a teacher and don't think I could be either, to hold a class of up to 30+ children in your care and keep them interested in whatever subject you are trying to share is a skill and talent.

So.... can you put a price on a good teacher? I don't think you can and J's teacher is the epitome of what I would call a "good" teacher. It's not just the knowledge she imparts but the way in which she does so. Teachers don't just coldly "teach" or at least J's teacher does not, In short she is lovely and J has thrived in her care this year.

Below I have listed just some of the ways in which J's teacher AND his Learning Support Assistant have helped J this year.

1. Going out of their way to welcome him into the Junior school and putting him at his ease.

2. Taking the time to get to know him really well in order to identify triggers for distress. These triggers are then minimised.

3. Learning how to use some software which enables J to write social stories using visual symbols. J then brings these stories home so that we can share them again.

4. Attending training to enable them to support J's ASD behaviours in the classroom and really get the best from him.

5. Not being afraid of moving away from the National Curriculum to help J (and other class children) at times. I am thinking here about how they supported J through the loss of Bramble our hamster. ALL the children had an opportunity to talk about loss and grief. J was then able to choose a flowering plant to put in the school garden. He was encouraged to write his pet's name on a large lolly stick which went in by the plant. Now he has a space in school to remember her.

6. By getting to know J and supporting him they have enabled my very insecure little boy to raise his reading age by 2.5 years over the last 9 months and to go from below national Curriculum level in Maths to achieving virtually on a par with his peers.

7. They have maintained regular contact with me and asked advice where needed about any of J's issues.

8. They have given J his self esteem back - how can you put a price on that? My little boy who always thought he couldn't "do it" when it came to academic work now has the confidence to know he CAN. This is wonderful to see in J and he is definitely easier in other areas as a result.

In short - I LOVE TEACHERS. They are unsung heroes in my book and this is why I support them today.

So thank you to all good teachers today, whether striking or not I think you are great.

Ditto to good schools where staff pull together as a team to support the children in their care.

For my Aunties.....

2011-06-28T01:59:00.000-07:00

For my Auntie Margaret and Auntie Theresa

Beloved Aunt oh so dear

I wish that you could still be here

To share your sage advice so true

You were always wise and always YOU

Such laughter and fun

We always shared

I know as well that you always cared

I miss you more than I can say

I’d love to spend another day

Laughing and chatting over tea

Being with you inspired me.

Sadness now that you are gone

Without you we have to carry on

I know you are in pain no more

And that’s a blessing I can’t ignore

But I miss my aunt oh so dear

And wish I could still hold her near.

Auntie Theresa with her beloved granddaughter.

Auntie Margaret with Uncle Johnny

This post is dedicated to my Auntie Theresa Mary Moir.

2011-06-15T10:43:00.000-07:00

Remember me when I am gone away,

gone far away into the silent land;

My Auntie with her silvery blonde hair before

she was afflicted with cancer

when you can no more hold me by the hand,

nor I half turn to go, yet turning stay.

Remember me when no more day by day

you tell me of our future that you planned:

only remember me; you understand

it will be late to counsel then or pray.

Yet if you should forget me for a while

and afterwards remember, do not grieve:

for if the darkness and corruption leave

a vestige of the thoughts that once I had,

better by far you should forget and smile

than that you should remember and be sad.

--Christina Rossetti (1830-1894)

My lovely Auntie on her birthday in May 2011

The Duck Walk!

2011-06-02T11:32:00.000-07:00

Following my rather angsty and moaning blog posts of recent I decided to be POSITIVE and get a grip!
So in the belief that sometime all little boys need a walk I took J (and my Mum) for a little trek round Langdon Wildlife Park at the Dunton Plotlands.

This walk is a favourite of J's not least because halfway round there is a pretty impressive lake with many geese, ducks, coots and moorhens who are always pleased to see a human holding a bag of duck feed.
J always has a bag of duck feed when we visit.
As you can see it was a beautiful day yesterday.

J confidently sounds out the words.

J really enjoyed following some of the signs hung in the trees which gave information about the variety of birds who call the nature reserve home.

It was also another opportunity to see how far J's reading skills have progressed since starting his medication.

Yesterday we managed to see Canada Geese, Mallards, Ruddy Ducks, Coots, Moorhens, Magpies and Jays.

I got a real boost from hearing J confidently sound the words out on the cards.

The lake birds realise there is company with FOOD.

J encouraged the birds to come closer so he could get a better look.

Beautiful Basildon (yes "really"?)

We all had a lovely walk around the lake and enjoyed the nice weather and the countryside views. J really loved seeing the ducks in pairs, the males with their shimmering green heads snuggled up to the warm brown feathers of the females.

The sky was very blue with just soft wispy clouds streaked across the sky - it was a glorious day.

We walked past masses of wild flowers which lit up the paths and verges.

After the walk we went into the wildlife centre for ice lollies and then a wander round the gardens attached. J bought an insect magnifyer and enjoyed capturing, observing and then releasing tiny insects. Meanwhile I spotted ~~an eldery woman on a bench~~ my Mum relaxing amongst the wild flowers.

Old lady sat on seat (My Mum)

All in all a lovely walk and a beautiful day. It was so good I have found myslef volunteering to go back next week to help when an Infant school visits to do some Pond Dipping. Can't wait... just hope the weather is as good as yesterday.

ADHD Myth and Reality

2011-05-23T10:04:00.000-07:00

Since J was diagnosed iwith ADHD (along with ASD, Dyspraxia and Hypermobile joints). I feel I have waged a constant internal war with those who think ADHD is all rubbish and an excuse parents have dreamed up to excuse bad behaviour. "It's a myth", "just an excuse for letting a child run riot", "it's rubbish and about poor parenting", "we didn't have all these children diagnosed like this when I was a child", "it's all about getting extra benefits out of the system", they get their kids labelled and then they claim benefits (amazingly these people think it is THAT easy) etc etc etc.

I have heard all the above and more since J was diagnosed, maybe because I have read about the condition and made myself aware of the history and theories behind it. Sadly the above comments are not restricted to strangers and much to my irritation and sadness have come from members of J's family. And I say "irritation and sadness" because if J does not have his family behind him what hope is there that anyone else will support him.

Other little gems regarding his Dyspraxia and ASD have been "he's not THAT bad", "let's teach him to use a knife and fork right now" (as the Occupational Therapist has struggled I doubt YOU will have greater success) which also blatantly suggests the advisor in question has little opinion of my parenting skills.

But back to ADHD. There appears a concerted effort by the powers that be currently, to label anyone disabled and claiming DLA as a "scrounger sponging off the State". The Daily Mail and The Telegraph are cases in point and in no time you nave those who have swallowed their copy of the Daily Mail for breakfast spouting forth about those with disabilities for daring to claim the benefits they are ENTITLED to.
This is bad enough without getting the same people - and there are now thousands of them, onto the subject of the "hidden" disabilities. Evidently people like me are responsible for fecklessly allowing our children to run riot and we the then "get them labelled" to excuse poor behaviour. They are then full on in their condemnation of such parents "claiming benefits". They completely ignore the fact that many parents claiming DLA for a child might also be working and paying taxes, after all that does not fit with their narrow world view.
If only getting a diagnosis were that simple, in actual fact J was not diagnosed until he was over the age of 7 and even then it took time for the speech and language therapists, occupational therapists, educational psychologists and community medical officers to decide that J would benefit from being assessed by the social communication team. Once he was seen and assessed though the specialist team had no hesitation in diagnosing J with ASD. Getting a diagnosis of ADHD, although this was strongly suspected from the assessments which had already taken place took even longer, and was not formally diagnosed until other assessments had been completed.

So reading the continued propaganda being published by an increasingly Tory controlled press is disheartening,. I can tell myself that they are all ~~arseholes~~ ignorant people with a narrow world view, but this does not take away the fact that there are an awful lot of them with many hundreds of thousands of readers who hold an equally narrow world view. It is the. I feel depressed, it is then I despair, it is then I wonder about J's future life in a world which has decided his disability does not exist. All I can see for him is a future of isolation, an oddball with a made up label according to an increasingly intolerant and selfish population and a future of mental health problems as a result. It is then I want to cry.

The fuzzy wuzzy foggy reality!

2011-05-17T05:02:00.000-07:00

Sometimes life is just too overwhelming and I don’t know where to begin. It’s a bit like looking through a smudged glass, all a bit misty and foggy and hard to see the reality. I find it hard to FEEL the reality, that’s what it’s like being me and what it has always been like. I told a counsellor once that my life and head felt like an un-tuned TV – all fussy and noisy without clarity. I don’t think she knew what to make of it or me.

All I can say is “it’s always been like that” because it has and I don’t know how this will ever change.

Some time ago (around 5 years ago) with yet another bout of serious depression I was given a new drug and the dose was increased. It was coupled with a beta blocker for anxiety - another issue which has always plagued me. I took the tablets for a week and then they kicked in.....lovely. For a few blissful days I experienced what it must be like to feel normal, I was alert, wakeful, controlled, calm and able to cope with the world. The disordered eating stopped and I had unending patience with James who I found challenging and difficult in the years before diagnosis explained his odd behaviours. It was wonderful.... and temporary, after around one week I returned to my normality which is foggy and unfocused.

I have had endless discussions with my GP regarding these issues and suggested ADHD/ADD. I have suggested Dyspraxia (which I am certain I fit) all to no avail, she will not refer me anywhere because I am an adult. Not only am I an adult but I am an adult “who has achieved and achieved well”. Yes I am but how much more could I have achieved or how sooner could I have achieved things if the issues which have plagued me all my life been identified in childhood with a definite diagnosis. There was lots of vague talk about my brain” working differently to other children”, just what did they mean? Meetings with an Educational Psychologist in childhood placed the blame firmly at my Mum’s door because her marriage had broken down despite the fact that it was my father who had left my mother high and dry. Great! If in doubt blame the mother, thankfully those days are gone.

My argument is that dyspraxic children grow into dyspraxic adults with the same challenges to their day to day lives. Likewise J is not unlike me as a child according to my Mum, let me think how many labels J has....and how much support he receives which was not there for me.

Interestingly I have learned this week that I had delayed speech and language development as well as difficulties with socialisation in school, the child who was bullied because she didn’t understand how to relate to the other children effectively, the child who was scared of flies and balloons which went BANG and left me feeling shaky, the total and utter disorganisation, the dislike of some wools next to my skin, the dislike of lots of background noise, facial blindness meaning non-recognition if someone was seen out of contaxt and many of these issues remain. Not for no reason am I a tad isolated at times, not for no reason do I find it easier to relate to my cat who is more predictable than I find people to be sometimes.

Sooo... my GP will refer me nowhere and I am not accepting it, I am taking matters into my own hands and have a private appointment with a Clinical Psychologist in July. I want answers to the difficulties I have had all my life and which I still have even though I have learned many coping mechanisms. It will be interesting to see what she comes up with...if anything. Even no answer from her will be an answer of sorts. At the very least I hope it will give me some insight into this feeling of being overwhelmed and foggy.

Music, Medication and Amazing Relatives

2011-05-05T13:04:00.000-07:00

I promised to report back on the medication so here it is...... it works. No idea of the how's and why's, just know that J's concentration levels are much improved and the only thing we've done differently is the pills.

A first music lesson has been successful and J learned the notes C, D and E which he has been slowly torturing me with ever since. And the same day as the music lesson J's class did "long jump" practice ... and J won!

Which leads me neatly on to famous relatives. It's a little known fact ( until now) that J has as a fifth cousin ( so very distant then) an athelete by the name of Lynn Davies who in 1964 won an Olympic gold medal for Great Britain in the Long Jump. He managed a distance of 8.23m which has never been equalled by a British athlete since. J wanted to know if Mr Davies aka "Lynn the Leap" had "jumped as far as I did"? My answer of "just a bit further dear" did not impress J who has serious winning "issues".

On the subject of famous relatives J's fourth cousin is the model and actress Lily Cole who is reported to currently be the 6th richest woman in the UK. Would you think me bad if I asked
her to be J's Godmother when he is baptised later this year?

"Yeah I know you've never met us but you were the first person we thought of - honest".

Why I like Sr Clare!

2011-04-29T00:14:00.000-07:00

From the Parish magazine on 3rd April 2011.

From Sr Clare...

"Have you ever thought about calling God
‘Mother’?
When we call God ‘Father’ we are making a real
call to a personal God, but the image in which we
clothe our call is a metaphor. God is not a human
father. Nevertheless ‘Father’ is the nearest we can
get to a true picture, according to our teacher, the
Christ. (Matthew 23:8-10).
But God the Father is not a man, nor is he a male.
‘Mother’ is another picture of God that the
scriptures use, though nothing like as frequently
as ‘Father’. ‘Will a mother forget her child?’ asks
Isaiah. ‘Even if she did, I will never forget you.’
Many children see chiefly in their mother the
characteristics of unquestioning love and endless
faithfulness which we ascribe to God.
Jesus compares himself to a mother hen: ‘O
Jerusalem! How often would I have gathered your
children together as a hen gathers her brood
under her wings, and you would not’ (Matthew
23:37)
Sometimes it feels good for me to say ‘Our Mother
and Father who art in heaven’!
HAPPY MOTHERS DAY!

Isn't that fabulous? I think she says it beautifully and I find her enthusiasm and approach to life inspiring and open minded. Meant to post this at the time as it struck me when I read it how right Sr Clare was when she wrote these words. She had said the same several weeks previously at the Journey in Faith course and it was good to hear but even better to see written down in more detail.

Too often we see a crude image of God in the masculine, the proverbial "old man" flowing beard and all the other manifestations so beloved of artists and Hollywood. We don't often sit down and think about the reality or the truth behind the patriarchal imagary. Why not a God who is in equal balance between the divine masculine and feminine? Isn't that a more likely and more balanced construct?

Many of us (either identifying as "religious" or not) have forgotten or lost the notion that God the Father was never separate from God the Mother and we have lost that duel aspect of developing a relationship with God in full completeness and balance. Interestingly during the years in which I saw myself as "pagan" I found many more people who DID see the male and female aspects of the divine and were much more accepting of this way of seeing God in balance though not accepting a Christian tradition of God. This balance was something which seemed right to me and was probably one of the reasons I was drawn to the pagan tradition initially. They were also much more aware of the dangers our masculine and technological society was capable of wreaking upon the Earth.

So Sr Clare's thoughts on this divine balance were refreshing to read and affirmed for me that I am now in the right place spiritually.

After several years of identifying with the pagan Goddess it feels right that it should be a woman who showed me that the Catholic Church was not the crusty old place I had imagined or assumed. That it can be pro-active and forward thinking, that the people involved were human and multi-dimensional, that there was an acceptance of more than one way for people to find God in their lives. And they have a successful approach - the church is packed to bursting point on Sundays with the overspill going into the church hall. So successful and busy are the Parish churches that there has just been planning permission granted for an extension to one church to accommodate all who attend. This is something I will bear in mind for the ~~weekly torture session~~ Childrens Liturgy which it is my happy duty to assist with.

Conversations with the ones I (mostly) love.

2011-04-27T12:59:00.000-07:00

So tomorrow is Prince and Princesses day at school courtesy of Wills and Kate’s wedding on Friday which co-incidentally will also be 11 years to the day since I tied the knot with M who is J’s Dad.

J will not hear of just plain clothes for the day and so a trip is made into town to buy a readymade crown and a metre of gold fabric which can be twisted into a cloak without too much hassle.

J informs me that he would like several fancy buttons and adornments sewn onto the cloak. I inform J that I am crap at needlework and short on time so he will have the outfit which involves the least possible effort on my part but which looks as though I have gone the whole hog.

Back home J tries on the fancy crown and material cloak – Skype is up and running so I suggest we Skype Daddy to show him the costume which goes down a storm.

While in conversation with M I mention a plan to attend a silent retreat in October this year. M does not even pretend to hide his amusement but does agree to have J for the weekend as long as he can have a silent retreat in a Pub on my return. M then disappears from the screen saying “just a mo”.

The phone rings and it’s my Mum – M returns to the screen with guitar singing “Shine Jesus Shine” and generally takes the piss, he then suggests that if I am attending a silent retreat I also take my mother.

My mother asks if M is here and I say he is on Skype. My mother suggests I turn M off until he can behave.

M then begins to play out the role of “some poor monk who took a vow of silence in 1945 but then came across you two”.

I think it safe to say M is off the Xmas card list this year.

Meanwhile J is dressed not as a prince but “as a King” apparently and is beginning to enjoy ordering me around.

The cat is yowling in the kitchen because she has suddenly taken an abject dislike to the ~~fancy overpriced spoilt animal~~ cat food which starving cats in other places would be glad of. As the years progress she is rapidly becoming like our last cat Grace who was , according to M “the most pampered animal that God ever put breath into”. All signs are that Drusilla is headed the same way in the pampered animal stakes.

Oh and M is taking me out for dinner next week (oh yes you are dear – and I like my wine to be white, chilled and dry).

Happy Easter!

2011-04-24T07:27:00.000-07:00

Musically my heart belongs to Kate.

2011-04-21T20:34:00.000-07:00

Kate Bush. The Hounds of Love album cover

I have loved the voice and music of Kate Bush ever since I was a teenager... listening to her music both then AND now is almost a spiritual experience. Her voice, lyrics and music speak to my soul and it's always moving. The music is beautiful, quirky, experimental and sometimes just downright odd - Aerial Tal for example where inexplicably Kate has recorded her voice over the top of a singing blackbird.
I started with The Kick Inside with Wuthering Heights among other fabulous tracks. The album was a commerical success and written by a girl not yet out of her teenage years. EMI having heard some early work when Kate was younger were quick to issue a "development contract" allowing her to hone her writing and dance skills. It knew a good thing and fired by the success of the first album encouraged Kate to rapidly release a second album Lionheart which, while it sold well was not the commerical success of the first one. When you consider that Kate released her first album in 1978 and her second album just 10 months later it seems amazing that both should have been well received.

The third album The Dreaming which was Kate's first sole produced album, was a commercial flop and Kate retreated for three years before returning in 1985 with arguably the best album of the decade in The Hounds of Love which was a massive commercial success.

The Hounds Of Love also experimented for the first time with a secondary insert - The Ninth Wave which looked at the fear of someone stuck in deep water right until the last moment with The Morning Fog and the light but is the person alive and rescued or reborn in a new life beyond death. Kate doesn't explain and I don't need her to - it's lovely as it is. I also love The Jig of Life with it's Irish influences - a nod to Kate's mother who was Irish.

Kate with the Trio Bulgarka

The Sensual World with its inclusion of the the fabulous Trio Bulgarka - a Bulgarian Folk Trio who sang Bulgarian Folk music and who were heard beautifully on Rockets Tail is another favourite. Rocket's Tail ? Well it's about her cat of course.

The Red Shoes which was scarcely out of the CD player when I first got it with another track about her Mum in Moments of Pleasure.

All albums which were welcomed and loved for varying reasons. All which spoke to me in different ways and which were played a different times.

Several years ago it appeared that Kate had stopped writing music and no new work was going to be forthcoming. Over that period of time I heard rumours and snippets of gossip... Kate was now a recluse..... Kate had had a baby.... there was never going to be another album. And then suddenly in 2005 there WAS a new album - Aerial. I had known for several months the album was on it's way and eagerly anticipated the new and long awaited music. While this is not a review for the album (apart from to say I LOVE IT) I have to say that there is some beautiful stuff on there. Music and lyrics which dealt with some parts of Kate's life such as "The Coral Room" which touched on Kate's memories and sadness about the death of her mother. The lyrics were both beautiful and devastating as a tribute to her Mum. It used metaphors about planes crashing down not as discussion of war but to describe the awful feelings which accompany the sudden death of a much loved relative. I think you would have to be fairly hard not to be moved by the lyrics ".....my Mother, and her little brown jug, it held her milk and now it holds our memories".

Then back to happy times with Bertie - Kate's tribute to her son. And oh I am right there with her, really feeling and understanding the sentiments she describes... "here comes the sunshine.... here comes this son of mine.... here comes the everything". Oh yes Kate I am with you on that one. J is an utter ray of sunshine with "truly the most fantastic smile I've ever seen" and he is indeed my "everything".
His bright and shining eyes as he describes a Lego creation to me, the imaginative and creative thought processes which are manifested in whatever Lego rocket he has built are amazing. And then at bedtime when J absolutely does not wish to succumb to sleep I am with Kate again as J becomes "the most wilful" and yet "the most beautiful" child who can wrap his mother around his little finger.

And the good news - on May 3rd a new Kate offering is released. - Deeper Understanding. It's a rehash of some of her older stuff with new interpretations - it will be odd, quirky, loved and hated in equal measure - I have already pre-ordered my copy. Even better Kate is rumoured to be working on new stuff.... I can't wait.

It's possibly too soon to cheer but.......

2011-04-09T22:54:00.000-07:00

Medikinet capsule - I hide the contents in cereal.

I attended a meeting in London with J yesterday and he sat through two hours of discussion and was an angel. He talked incessantly (nothing new there) but he concentrated on his Lego, his DS Lite and on a mini Etch-a-Sketch. Despite all the noise and distractions J sat and concentrated. I cannot put intop words how big a deal this is. Is it the medication? Probably too soon to say but it's an improvement.
When we got home J totally spontaneously took a book from his book bag, sat down and read it to me from start to finish - another first. Wow!

And on a positive note the ConDems have decided NOT to make any changes to children's DLA for the present time. I reckon the Tax Credit premium is ripe for picking though.

DLA and Despair

2011-04-05T09:21:00.000-07:00

Fifteen months ago I massively decreased my hours at work to support J emotionally and psychologically. More and more problems were surfacing at school and I had a child whose self esteem was rock bottom. The decrease in hours coincided with a move to a council property which was all I could afford on my lower income so was very welcome despite being on the local sink estate.

Despite the decreased rent my finances were in dire straits as I was limited once the rent and council tax plus other bills were paid. It was a hard time financially and at times I wondered if I had done the right thing. J was obviously benefitting from having me around much more though and even better I was able to sort out issues which had occurred in school there and then at home time.

In March 2010 James was diagnosed with Autistic Spectrum Disorder, Learning Difficulties, ADHD, Dyspraxia and Hyper mobility. With the diagnosis came a better understanding of J’s quirks and an affirmation that I had made the right decision regarding work hours. I was introduced to a local special needs centre where J could attend a variety of groups to help his social communication skills and my reduced work hours meant I could attend them.

The consultant told me to apply for Disability Living Allowance for J as she said I would need the extra income to pay for attendance at the centre (non-profit making) and extra petrol costs which given the increase in prices has made me realise how true this is. I applied and was relieved to be successful for J – J receives the middle rate care component and lower rate mobility. He doesn’t get a car or a blue badge with these rates and nor does he need them. He is more than capable of walking but requires constant adult supervision outside by roads as he is very distractible, impulsive and still not able to always remember that cars travel on both sides of the road. An instruction to “look both ways before you cross” can still have J looking both ways as instructed but not actually seeing the cars and stepping out. He has on those occasions obeyed the instruction quite literally and “looked both ways” but not made the connection that he needs to wait if cars are coming. Thankfully this IS improving slowly but J is still not reliable and I would fear for him if left to his own devices.

The middle rate care component relates to J’s hyper mobility and dyspraxia which make it hard for him to manage normal everyday tasks which others take for granted. For example using a knife and fork remains a closed book despite input from me and limited input from Occupational Therapy. In addition J needs routine and instruction to manage day to day tasks, dressing himself takes a long time (so I end up often doing it for him on school days), he needs step by step instructions for some tasks, becomes upset with change to his routine and displays much more challenging behaviour when this occurs. Added to this are constipation and withholding (a vicious cycle) and the odd 2.00am bath to settle J when he has stomach ache or has wet the bed (many nights of the week), additional washing, soft cotton clothing which is seamless to stop him feeling irritated under his uniform as well as being aware of certain noises which can upset him and you can see how life can be unsettled but interesting with J.

With DLA came an increase in Tax Credits and for the first time since my hours were dropped I was able to manage financially again without panic and worry. It was a relief which I cannot describe but it made me feel secure. I was able to support J’s physical, mental and emotional needs by working part-time and I was no longer falling behind with bills and that gave me much more peace of mind.

J’s DLA is due for renewal next March 2012 and although I am tempted to write “still autistic” across the top of the form I am guessing in the current climate this will not pass muster.

So – to yhe current time and the plans of this new government for DLA which will see it being halved for children like J with higher functioning autistic spectrum disorder. Along with this cut will be the decrease in the tax credit premium and all in all there will be less money for children like J who need additional support which isn’t always obvious visibly. J can walk, run, jump albeit fairly clumsily, he can be taken shopping (he is the “odd child” who walks rapidly up and down the aisles clapping, spinning, talking to himself and generally being very autistic). He can go to school with one to one support, he can build Lego and he can play with other children.

What he cannot do is understand social communication, the need to take turns, the fact that sometimes you lose in a game and that other people have feelings when he is in conflict with them. James finds conflict especially hard and his feelings of frustration can manifest themselves in physically hitting other children (thankfully rarely). At home it takes the form of stamping, slamming doors and shouting although this has decreased with work on anger and feelings. This is work I happily do with J and which helps him to see things from the point of view of others. It works especially well when worded as a question such as, “how did X feel when this or that happened” so that J has to try and put himself in the other person’s skin – not easy for him due to his ASD.

So I am anxious about the plans for DLA – I cannot honestly say that J will be fine without my additional input at present, therefore increasing my hours to increase my income if J is refused DLA or it is massively decreased is not an option presently. Sadly I am thinking ahead to the possibility of a future without work. A colleague at work told me that the Govt needed to look at DLA “because of all the fraud”. When I pointed out that DLA has one of the lowest rates of fraud (just 0.5% of claims) she said that these fraudsters make it bad for everybody. Yes they do but it would make more sense to me to go after these fraudsters rather than plunge people caring for children or adults with a disability into a financial nightmare of anxiety. I could go on and on about other issues as well, for example those with children who have severe physical disabilities and need continence pads - apparently only 4 nappies/pads a day are allowed regardless of need - something David Cameron promised he would tackle if he was elected.

The Government say that existing claimants will be protected – of course all existing claimants will need to renew their claims at some point at which time the new measures will come into force. But hey – “We’re All In This Together” – right Dave?

Medication Merry Go Round.

2011-03-30T04:01:00.000-07:00

A few months ago I posted my anxieties and concerns about using medication for J's ADHD. In my experience of J he is active, loud, always on the go and keen to amuse others. In the school's experience J was very similar but was able to be kept "on task" with the one to one support of a Learning Support Assistant (LSA) during school hours. They also put in place regular "comfort breaks" where J can just walk around for 5 minutes to use up some energy and gave him the use of blue tack and other fidget accessories when he needed to sit still. Despite these things (and there is nothing wrong with being active, loud and always on the go") J's ADHD seemed to me and his school perfectly manageable without needing medication. J IS very active but not "climbing the walls" - well not at school anyway. Of course J has days where he appears "extra autistic" and the the ADHD can become more problematic simply because reaching into J's headspace at those times is much harder. Thankfully those times are not a daily occurrance and so therefore medication did not seem a necessity to me.

Yesterday we saw the Consultant Paediatrician who was wonderful with J, she made him a paper frog which could be "hopped" across the room with a bit of practice and watched J as he flitted from one thing to another with scacely any level of concentration. We discussed medication and I said that J appeared manageable in school and outside without it. The Consultant looked at J again and asked about reading and other academic progress which I said was all assessed as "below average" despite effort being assessed as "very good" and "excellent".
The Consultant then said that in her opinion J would benefit from medication as she felt he was a bright child who was currently not achieving his potential simply because his brain was functioning in such an erratic manner when it came to concentration. In her opinion medication could make a huge difference to J and help his level of concentration so much.
When I mentioned that J wanted to learn the Clarinet she more or less laughed and mentioned that "two wrong notes and the instrument goes across the room". I have to say she has a point as I can well picture exactly that happening.
So - I have agreed to a month of medication which is given once a day and wears off after 8 hours. If it does not help it can just be stopped - the body apparently does not become dependant on this drug (we'll see). I am under no illusions that this will be a magic pill, I know it doesn't work like that but I am prepared to give it a go and see how things work.
I agreed to the medication before but didn't give it after a week or so as I saw no difference and J didn't want to take it. The Paediatrician says the previous dose was very low - too low to see any difference. This time although J starts on the low dose it increases (doubles) after 7 days and a week later goes up again for a further two weeks after which I will evaluate with the school to see if any difference has been noted.
Another issue is that J just refuses point blank to take the medication so I am having to break the capsule open and hide the contents in his breakfast which just does not feel right to me. I am J's security - the one person he trusts most in the world and it feels very deceitful to be making him take this medication in such an underhand way. On the other hand if he was diabetic and refusing medication I might need to be equally sneaky. Both diabetes and ADHD affect life chances and opportunities albeit in different ways and just because we cannot test for ADHD in any visible way does not mean it isn't there. So in addition to peanut butter on toast for breakfast this morning J also had a chocolate mousse with a hidden ingredient. Tomorrow it will be yoghurt and if a different child emerges in 1 months time I will eat humble pie and admit my prejudices against medication were wrong. Watch this space........

Hogwarts Castle

2011-03-22T03:51:00.000-07:00

J follows the instructions

Just recently J has discovered the world of Harry Potter and friends; it started with a Lego Wii game and progressed to the first film, then the second and finally a reading of the first book in small stages when J could be persuaded to sit down. So I was not surprised when the more recent Lego requests became less for Star Wars and more for Harry Potter and even less surprised when the kits J was eyeing were in the £70 - £100 mark. This was a difficult issue for J as he does not have a birthday mid-year but 5 days before Christmas, therefore asking him to “put it on your birthday/Xmas list” seemed a tad cruel.

So – what to do? J’s Dad hit on the idea of asking J to achieve something which he finds difficult I will spare J’s blushes here but sufficient is it to say that it involved the bathroom! Once the task set had been achieved 30 times then Dad would buy J the Lego Hogwarts Castle retailing at the time for £102 :-O. J had the ultimate control over when this was achieved and could achieve 7 times a week of 3 times a fortnight – it was up to him but he quickly cottoned on to the fact that results meant stars on a chart and that stars on a chart meant Lego once sufficient had been achieved.

So fast forward to last week when the Lego arrived, J had achieved his goal some time previously and was eagerly awaiting the parcel from his Dad. It arrived – a massive box of Lego with 10 bags for construction and a three large construction books. My heart sank from experience of hours with Star Wars Lego space ships lovingly built and broken into loads of pieces rapidly so that J’s own designs could be built. I wondered how long it would take but was pleasantly surprised when it became apparent that Bag 1 constructed all the figures and beginnings of the castle meaning that the Lego could be played with immediately rather than waiting for all to be finished. My second nice surprise was how easily J followed the instructions to the set - it was lovely. He had constant supervision, but largely built the castle himself with just occasional guidance from me.

The castle took us 3 days on and off to build but once done it was beautiful – pictures do not really do the detail in it justice.

"Stained glass" windows

J peeking through the finished castle with pride.

The "almost finished" castle.

Some thoughts about Spiritual life

2011-03-09T10:24:00.000-08:00

The Sun and Moon by The Artistic Fox

“The word “God” has become empty of meaning through thousands of years of misuse”

So says Ekhart Tolle in his book “The Power of Now” which I have been reading on and off for several weeks now. It’s been food for thought, reflection and contemplation as I have been experiencing a bit of a rebirth in my spiritual life.

Who or what is God/Goddess? How does this divine force relate to my life and to those around me? Are the Atheists correct in their assumption and belief that there is no greater power?

I have always felt the presence of a divine force, I have not put any name to this other than God or Goddess and those names come from my experience of both the Christian faith and from Paganism. I am equally well aware that other will think all this is supersitious claptrap and each to their own.

As a child I was baptised into the Church of England and I attended a C of E School mostly.

I attended Brownies and then Guides both of which had an obligatory presence at the Family Service once a month, I attended a Sunday School and the Monday club which followed the next day. I went away for fun filled weekends with Min and Jack Bentley who despite being in their 70s were game enough to devise and join in all manner of active sports such as Rounders, Football, Cricket and a game which involved flour, water lots of screaming and running I seem to recall. They were great and a real positive influence on some very difficult teenagers with their interest and involvement.

Fast forward to nurse training and then the spiritual stuff mostly went by the wayside as I spent time working shifts and weekends became filled. At times I involved myself in Christian based stuff but to be honest it was no longer an important part of my life.

Life went on and although I still felt the sense of an “other” higher power, a divine spirit, I could not put a name to this other than to know that for me it was still there. I am aware others do not feel this connection and I do not seek to impose this upon others, however, it was and is very much there for me.

During the past 14 years I more and more identified myself as Pagan in my beliefs – a higher power was still there, the divine feminine and no crusty old (male) Priest between me and this higher power. I could talk to this higher power, I could spend time in quiet contemplation and feel a connection to the divine and the life force all around me. What I did not have though was a community with which to meet and identify on a regular basis and it’s only just recently that I have come to realise the relevance and importance of this for me. I am aware that there are many Pagan groups which meet regularly all over the country but there was nothing that I could identify with locally. This has always felt irrelevant and I thought and felt I did not need this community of others.
The catalyst for change has undoubtedly been the death of my Auntie M, a Catholic who celebrated her faith in her own way throughout life. Bad experiences of Catholic run schools as a child left her with a bad feeling about the whole Catholic Church so although she remained Catholic until the day she died she would not set foot in a church. I have other relatives who will not enter a Catholic church for similar reasons. Likewise my prior experience of the Catholic Church has been the Priest who conducted my grandmother’s funeral who was elderly, set in his ways and had little in the way of people skills although I do not doubt he was probably a kind man.

So the Priest who arrived to discuss my Aunt’s funeral was a breath of fresh air, I did not meet him at this stage but he apparently turned up in jeans. T-shirt and trainers. He was very human, knew all about the grief of losing a loved relative to cancer as his own Mum had died when she was in her early sixties from the disease. He was great with my Uncle and very open to fitting in the requests of family to the service which he performed with a real compassion for the relatives of my aunt.

I met him again after my other aunt was sadly diagnosed with an inoperable brain tumour, he talked again of his Mum and the understanding that for relatives as well as the patient cancer was a nightmare which nobody wanted to live through but which inevitably some of us will do. He was supportive and understanding - even better he is quite up for a good laugh so thank you FrB.

This has all coincided with J wanting to attend church – his friend M goes and there are cakes and biscuits on sale after the Mass – no guessing what J’s motivations are! In addition his friend is attending Holy Communion classes and J wants to as well. Just one problem – J has never actually been baptised so has to do this first. The priest has suggested commencing the Communion classes in September with a Baptism being performed around Christmas time near his birthday. It all feels very strange..........

So – here I am after 20 odd years of not going to church but having my own beliefs about spiritual life, now actually attending a weekly Mass in the local Catholic Church. The parallels with Paganism have not escaped me – loads of symbolism, lots of use of various elements, baptismal water (self explanatory), Holy Spirit (Air and Spirit), Candles and flames (Fire), Ashes at various times (Earth). And I am finding a peace in attending this weekly service, making time for reflection and prayer – just as I always did but with a community of others and that feels important and right.

Miss me but not too long

2011-02-20T07:44:00.000-08:00

At the moment my life is surrounded by loss. The loss of my much loved Auntie M (pictured here with Uncle J in Switzerland), the serious illness of my other Auntie and my Mum facing the prospect of being the only surviving sibling. This is not an easy place for Mum to be, a lonely place and a nightmare which she has no choice but to live through. Naturally this is taking it's toll upon her as stress bites and takes hold.

My Uncle J who is missing my Auntie dreadfully is coping well albeit sadly and about to embark upon a trip back to his native Switzerland to see his children, grandchildren, great-grandchildren and old friends.
One of his old schoolfriends who was widowed 3 years ago recently wrote to him sending a beautiful poem which she had thoughtfully written in both Swiss and in English. It was so lovely I copied it and am reproducing it here.
So to anyone who reads this and has known the loss of a loved one I hope this helps.

Miss me but let me go

When I come to the end of the road

and the sun has set for me

I want no rites in a gloom filled room

Why cry for a soul set free

Miss me a little but not too long

And not with a head bowed low

Remember the love we once shared

Miss me but let me go

For this is a journey we all must take

And each must go alone

It's all a part of the Master's plan

A step on the road to home

When you are lonely and sick at heart

Go to the friends we know

Bury your sorrows in doing good deeds

Miss me but let me go.

Those non-rhyming poems

2011-02-19T12:29:00.000-08:00

Have you seen those poems which don’t rhyme but which tell a kind of story? Well here’s mine and it sums up life with J over the past few months pretty well! It could be crap but hey – it’s the first one I’ve ever written so bear with me.

Judgemental comments and discrimination

We feel these much too often

Critical words cut like a knife

As my son and I go about life

He doesn’t see the world as you and I see the world

His world is blurred and at times confused as he seeks to make sense of the myriad of social situations.

At times the world is filled with sounds too much for his acute senses

Other times he is filled with emotional meltdown

James wants to be a “good boy”

One who follows the teacher’s instructions and not the “bad boy” who cannot always.

Yet his teachers say he’s good, sits nicely and is well behaved

But my boy does not see this in himself :-(

His deep thinking and breakthroughs are my real salvation

“Will you be okay without your wife” said to my recently bereaved Uncle while stroking his arm.

Oh so proud that he recognised grief and sought to comfort, that he can care for others despite his difficulties.

Another week and new achievements, a karate badge, Star of the Day and then Star of the Week in school,

A school who made such a positive song and dance about his achievement

Oh so happy and so proud

My son gives me Always Unique Totally Inspiring Special Moments

Love knows no bounds

And I give thanks to God for giving me James

A Day in my Life

2011-01-29T11:16:00.000-08:00

Quite often I reach the end of the day feeling as though I have accomplished nothing and it’s not a satisfying feeling. Today has been one of those days and as I ran a bath for J I reflected upon what I had actually done since waking up this morning. If ever you have this feeling of uselessness I can recommend the reflection – it’s quite an eye opener. The timings are a bit approximate but everything listed here happened today.

So

6.40am: Awake and out of bed, drink coffee, plan on tidying up!

7.00am: J awakes and staggers downstairs – how he manages this with an 11pm “falling asleep” time I have not yet got to the bottom of.

7.30am: Prepare breakfast for J – drink second cup of coffee, wash up.

8.30am: J on the loo having not been able to open his bowels for 5 days despite copious amounts of Senna. I sit and rub his tummy, encourage him to rock and blow bubbles to no avail. Dry his tears, reassure him that yes he will go. Run first bath of the day for J as he is overflowing and soiling.

9.00am: Help J out of bath, encourage him to dry himself and put on clean clothes

10.00am: Receive e-mail confirming that S and IW are coming over this evening, housework now more of a pressing issue.

10.30am: J playing game on computer – rages and melts down when laptop overheats (as it does regularly). Calm J down, suggest he watches The Never-ending Story which has just started on TV.

11.15am: In Tescos doing the shop without J as J’s Daddy is in Essex at the moment.

12.00MD: J’s Dad prepares bacon sarnies – lovely

1.00pm: J sat on the loo again sobbing, agrees to suppository which is given, put timer on for 20 mins while J lies on the sofa

1.20pm: J goes back to loo and pushes out suppository but nothing else, more tears and more overflow and soiling. Run J a second bath, put clothes in washing machine and look for washing to add.

1.50pm: J out of the bath, clean clothes found, and encouragement to wash and dry given

2.30pm: Sit on Facebook chatting to a Mumsnet friend in Scotland who is balancing motherhood, work and study (my hat is off to you EP – it isn’t easy).

3.15pm: J rushes to loo and produces! Hooray! Help him to clean himself up and find clean pants, put the second soiled pair in washing machine.

Have bath and wash hair and wonder why there is so little hot water forgetting there have been two baths run already today!

4.00pm: J rushes to loo and produces again! I think this is the definition of a good clear out and much needed! J cleans himself up in a fit on independence but misses some areas!

Put hoover round, wash up again, take rubbish out to back gate, wipe kitchen surfaces and return to living room to find J has brought the hamster downstairs and is sitting with her on the sofa. The cat watches with ill disguised interest. Encourage J to put Bramble (hamster) in her ball so she is safe from hunting eyes, ears and claws.

4.45pm: Take hamster safely back to her cage and shut her in. Evict cat from inside the hamster cage where she has gone to explore.

5.00pm: Slobbing on sofa drinking juice.

6.00pm: Clean cat litter tray - take bag of soiled litter out and replace with sparkling clean litter (cannot wait for summer when hopefully cat will use the garden).

6.30pm: Notice J has very – ahem – unclean pants on – run him the third bath of the day (hope this is the final one).

J protests about a third bath – explain in simple terms that he has had the clearout to end all clearouts so needs to be clean otherwise will get sore. J agrees to bath.

7.00pm: Sit and write blog while J splashes in bath. Prospect of wine and curry looms – just hope am not going to be too tired to enjoy all!

Housing!

2010-12-01T22:53:00.000-08:00

For the past year J and I have lived in the local sink estate. I hate the term "sink estate"as it condemns anyone living there as the type of person to be avoided. I have seen terrible things here - a fight among two girls and a man which ended with one of the girls leaving wheeling her six month old baby. I have seen blatent drug dealing and witnessed and experienced lots of anti social behaviour. On the other hand I have also had good neighbours, people who like me are just living life peacefully, going to work, coming home and raising children. I have seen all the work which goes on here to try and promote community cohesiveness. There is an active community centre, football coaching, a cybercafe, Health and Wellness projects and a regular newsletter advertising upcoming events for residents. In short it's not all bad here apart from a few bad apples - and everyone here knows who these people are.
With J's diagnosis I decided without much hope to apply for a housing transfer. J is very very active and there are times when I wish we had a garden so that he could run around outside safely and burn off some energy. The Occupational Therapist also suggested a garden would help as it could contain a small trampoline which would help J's hypermobile joints.
I sent in a transfer application and completed a medical form regarding J and sent this back with a covering letter and photocopies of J's medical letters. I heard nothing and initially thought that J had not passed the medical officer's assessment of need. I was told by a neighbour of J's grandmother (who works in housing allocations) that the medical officer was notoriously sparing with what he would pass and what he wouldn't. To me with an extra bedroom above my needs it would seem he had decided there was enough room in the house to meet J's needs. Then out of the blue a letter came stating that we had been assessed as "Band F" and "Medium Priority". I was delighted as obviously the medical officer had given extra housing points for J. My Mum's neighbour though was negative " you'll wait forever" she said "the two bedroom places are in such short supply they are going to those on Band C and above". I was a bit dejected by this but decided that I would make the best of things and splash out on carpet for the spare room and vinyl for the kitchen, bathroom and toilet. It cost a small fortune but was worth it as everywhere looked so much better. This was August.

Last week and again out of the blue a letter came stating that we had been reassessed and were now in Band C (High Priority). I was over the moon as we were now in the magical realms of "Band C and above" but still expected a long wait for re-housing. On Saturday I recveived a formal offer of a property near to my Mum and sister. I drove out to see it immediately, it's a little redbrick house built in the last five years or so with a good sized garden for J. It had evidently been left in a hurry as there was still washing up in the sink. A note on the front door stated that "the rabbit has now been rehomed, if you have any queries contact S at Swan Housing".

Yesterday I took all papers to Swan Housing and an application form, the Lettings Officer chatted for a while and said that there had been panic about the rabbit with the staff even being asked if they could rehome him until someone else stepped in. The Lettings Officer said she would get a letter with a formal offer out to me and we could arrange a viewing as soon as possible. Driving back via the house I could see a small truck packed to the hilt with property from the house. The men clearing said everything had been left including baby photos and children's clothes. I found this sad - someone had evidently just walked out of the door taking a child (or children) two cats in baskets and a small bag according to the neighbour. The men clearing thought there might be a debt such as rent arrears behind the sudden vacation of the property. All the property goes into storage until the owner can collect it.

I hope to be in within the next two weeks all being well and am surveying this house with despair - so much to organize and pack. Thank goodness for supportive family who have simply said "don't worry we will all help". I love them all so much and am feeling so fortunate.

Unequal fights and battles.

2010-11-24T10:04:00.000-08:00

This is not a blog about J but a rant about the unfairness of life sometimes.

I hate cancer, it’s the most godawful and unfair disease which can seemingly strike without warning and has no certainties about it. In the same way I hate seeing terms and words like “fighting” cancer and "battling" because without a doubt you cannot “fight” or "battle" cancer. Fighting suggests equality and there is nothing equal in this fight, you take the treatment and you hope for the best. You keep a positive frame of mind (or perhaps are a positive person anyway) and if you are lucky the drugs will work and you will be cured. If you are not lucky the cancer will return and find somewhere else to take root. Then when you have your backache/painful leg etc a doctor will talk about “muscular pain” and treat accordingly before finally admitting defeat and suggesting a scan which shows the cancer has spread to your spine, leg, liver or anywhere else it feels like.

I don’t have cancer, I have seen plenty of people WITH cancer who fall into the “lucky” category and lived to tell the tale. I have met others who fell into the second category and are no longer with us. I am closer still to people who are IN the second category and still with us.

Both my aunties have cancer – both are women who have lived productive lives and given so much to others. One auntie is well and truly in remission following a rocky summer, the other auntie having had several periods of remission suddenly seems to be going downhill and there is nothing I or anyone else can do about it – there is no fight because without a doubt this disease will succeed sooner or hopefully later.

My auntie is a wonderful, warm and caring person, a mother, a wife and much loved sister. The past few years have been up and down since her diagnosis of uterine cancer three years ago. The cancer was a “Grade One” and “just about the lowest grade it could be”. Other memorable phrases are “this cancer is contained – it doesn’t go anywhere” (forgive me here while I have a hollow laugh), and “as an insurance you could have some radiotherapy” (my aunt did).

So fast forward a few months and she is bleeding “it’s a polyp” (oh yeah) and even more months while she waited for a consultant appointment to be told the polyp had “changed”. Surgery followed and results showed spread of the initial cancer. More Radiotherapy followed and things settled apart from lower leg pain which was deemed “muscular pain” for months and months before a GP finally arranged an X-Ray which showed changes in the bone (you don’t need to be Einstein to work out what these changes were).

Next Consultant appointment:-

“Oh it’s spread to the lower leg – gosh that’s rare” (No sh*t Sherlock – that’s why you’ve been confidently saying “muscle pain” for the past few months then). Surgery followed and a pin to prevent the bone breaking was inserted. Fast forward another year and “my gosh that’s not really working either – let’s get a second opinion from Stanmore” (if only they had done this initially).

The Professor at Stanmore was lovely and experienced and recommended “an above knee amputation in the New Year – either here or at your local hospital” (Stanmore Stanmore Stanmore NOT the local hospital with doctors who told my aunt her lower leg pain was “muscular” so many times).

Just two weeks on things are changing, a bad dog bite to her hand has meant more surgery for my aunt and she is becoming forgetful and unable to get her words out. She looks tired and unwell despite several days of antibiotics (including IV antibiotics), painkillers and a blood transfusion following surgery at the weekend. More worryingly when my Mum was helping my aunt dress when she was discharged from hospital she noticed a large swelling just below the shoulder blade. I am so angry about the waits she endured earlier on in her treatment because we just don’t know if more urgent treatment would have made a difference. Now all we can do is support her, love her and make sure she does not feel isolated and alone (not likely with my wonderful 85 year old Uncle who is doing everything for her). We are visiting when we can and getting bits in for her – she is eating and drinking and still on good form but frustrated by her inability to find the words she wants to. I feel the next few weeks will bring more information and I am not confident this information will be positive.

Concrete Bowels!

2010-11-06T01:11:00.000-07:00

From early child hood J has had an ability to avoid opening his bowels for a few days at a time. This is partly because he is usually very busy and does not have time to sit on the toilet. The other reason is because he has obviously felt pain in the past after his episodes of withholding and so wants to avoid this. I have had several people tell me this is very spectrum like behaviour, however I have seen it lots in neuro-typical children too and am unconvinced about the association with the autistic spectrum.

So - this week J has managed a whole 8 days without opening his bowels. I have tried Lactulose, Movicol (ongoing) and glycerine suppositories all to no avail. I have watched with trepidation as he eats and adds more waste to the bulk already there and I have seen J adopt a variety of positions much like a woman in labour to cope with the pain he was experiencing in his rectum and abdomen. I have had him sitting on the loo with his feet on a box and blowing bubbles, I have had him rocking back and forth and singing songs all to no avail. As the days went on I was increasingly both anxious and amazed by his abilty to hold on to it all. By Day 8 I was amazed he could even walk!

By day 7 it was getting horrible, J was experiencing increasing stomach cramps but was totally unable to cope with the idea of sitting on the toilet. Offers of another glycerine suppository were aggressively refused and I was in despair. I spoke to NHS Direct who were lovely and agreed that I needed to see a doctor. I phoned the GP surgery and asked if a GP could ring me back, a lovely lady doctor spent ages going through what we had already tried and agreed I had tried all the right things - she suggested buying some Senna. A trip to the local Pharmacy followed where the pharmacist would not sell me Senna because "we don't usually sell this for children", however did agree to give me some Ex-Lax. I gave this to J with his nightly dose of Lactulose.

By Day 8 J was doubled in pain, crying and refusing to move - his activity levels were certainly curtailed. I rang the GP surgery again but the phone rang and rang because it was morning and they were busy. J then became hysterical when he discovered blood after sitting on the toilet and I made a snap decision to take him to A+E for advice and to ask a doctor to feel J's abdomen. The staff in A+E were brilliant with J and accepted his refusals to have his temperature taken. I was embarassed by J's refusals but they took it in their stride. I was very clear with J that the doctor would have to feel his tummy and that he HAD to co-operate, J agreed until time for co-operation began. He flatly refused to enter the room until he had questioned the doctor closely about his intentions - "no J I am not going to use any needles I just want to feel your tummy". Grudgingly J agreed to lie on the couch but told the doctor "don't cut me open", the doctor kindly agreed NOT to do this and peace reigned. The doctor could feel that J was "bunged up to the eyeballs" (my words and not his) and suggested that he give a prescription for Senna that the pharmacist would not sell me the night before. Anything else was out of the question as J would not co-operate.

So Senna was given at about 5pm to work overnight and by 6pm the combined effect of the rest of the stuff given began to make itself felt. J was hysterical and the only thing he would agree to was a bath. I ran the bath and J got in with help as he was by this point hardly able to move. Twenty minutes later J shrieked that he had "pooed in the bath Mum" and I went in to find J sat sobbing in pain - he had managed, however to have the beginnings (large) of a clear out. He was refusing to move due to the pain and it took 10 mins to persuade him that he could not stay in the bath and had to either climb out or let me lift him out. In the end I lifted him out to yells of pain and he stood wrapped in a towel and crying. Just a few minutes later he rushed into the loo and cleared out masses more and then we had more minutes of refusal to wipe his bottom "because it hurts Mum". It took some time to persuade him that we needed to get him clean or he would remain sore. I resorted to bribary at this point - wipe his bum or let me do so and he could have his pick from the tin of Celebrations bought for Xmas. It was no contest and despite crying he managed with help to clean himself. The tin of Celebrations (appropriate) was brought up and a few sweets chosen.

An hour later J announced that "nothing hurts anymore" and began bouncing on the bed.

I had a headache!

Ritalin and ADHD

2010-10-25T10:55:00.000-07:00

My life as J's mother seems full of contradictions and things that I WILL not do or believe in until I am forced to confront them. It has now been confirmed for definite that J is definitely showing all positive signs of ADHD according to the observations and questionnaires completed by myself and others. He scored so highly in fact that the paediatrician had no hesitation in saying that she would advise me to go down a medication route to see if this would help. I came away with consent forms, the patient information sheet from a box of Ritalin and several books about ADHD including one to use with J which reiterates (as I will) that "ADHD is not an excuse for bad behaviour". I like this phrase very much because J is definitely a child to find an excuse if the need arises - using ADHD as an excuse will NOT be an option.

So to Ritalin, I was always the parent who said (and still do) "not on my child". Talking to others has confiormed this to some degree as everyone has an opinion on Ritalin and I have heard horror stories. I suppose for me the question is not whether or not I elect to give Ritalin a trial for J but more to ask what the paediatrician hopes Ritalin can do positively for J. To this unfortunately there is no clear answer. I am very clear that Ritalin is not a magic pill and even if I do try it then there will need to be other management techniques as well. I have asked if J could have it "just for his days at school" and not take it in the holidays or at weekends and if he could just have a very short trial. In short I am unsure still - the thought that there could be something which might make learning a bit easier for J is very tempting but then again it means adding a powerful stimulant medication to his young body and I baulk at this.

Today there has been a phone call from the paediatrician - I have returned the call and am waiting to hear back from her. Questions are mulling round my head and I am devouring a book called Beyond Ritalin which dispels the myths (both positive and negative) about the drug and also talks of alternative and non medication programmes. The book is fairly old but seems good and readable - it is also very rational and "rational" is what I need more than anything at the moment as I try to make a decision. J's Dad is of the opinion that unless we try it with J we will never know if it can help him, I agree with this but still have my own qualms about it all.

J's behaviour can be challenging at times but on the whole I manage my life around this and he is not generally a problem at home or in school. In school the major problem is his level of concentration and he is not "bouncing off the walls" in the same way that others are with ADHD. He struggles though and things come slowly to him because of his poor attention span - if Ritalin can help this then I would feel wrong in not allowing a trial of it.

I sway one way and then the other and suspect I will make a snap decision following a further conversation with the consultant in the next few days. If I do elect to try it then I will note any effect it has for J. If it doesn't work then at least I can cross it off the list and move on to other ways of helping J manage it.

Caged in Chaos

2010-10-06T12:41:00.000-07:00

L, me and L's brother in 1975

“......there are times when I feel as though I am lying diagonal in a parallel universe – it often feels as though the Gods (and Goddesses) miswrote the postcode and packed me off to the wrong planet at birth. I have quite an unusual perspective on life at times and while this is always a guarantee of colourful originality it can also feel like a cage”

The above quote comes from a book called “Caged In Chaos”. The book was written by a sixteen year old girl with Dyspraxia. Dyspraxia is a label which has been attached to J to go along with all the others he now has and means that while many of us carry out some everyday skills without a thought J is left behind.
Dyspraxia (also known as Developmental Co-ordination Disorder or DCD) comes from two Greek words: dys (abnormal) and praxis (doing). It goes way beyond this simple translation though – the things which people take for granted can literally be impossible for those with dyspraxia. Neither is there a neat uniform way of diagnosing the disorder – dyspraxics don’t do “neat and uniform” and in the same way they do not “do” organization either. This explains why J’s room is always such a mess but might also explain why his mother is totally unable to co-ordinate either and why she finds it hard to know “where to start” at times.

I am certain I have some attention deficit problems and recently considered going the whole hog and pushing for a diagnosis of ADD/ADHD for myself. My GP talked me out of this and I am grateful that she did as it was going to cost nigh on £800 for a private consultation and diagnosis if appropriate.
Dyspraxia though I can see myself fitting into far more and the childhood stuff fits me far more. So does the adult stuff and suddenly the comments of “bloody hell Mand – look at the state of your desk” and the resigned laughter from my work colleagues does not seem so strange! The same laughter which has followed me throughout my working life and which has made me seriously doubt myself and my abilities at times.

Yep – definitely lying diagonal in a parallel universe with organization a closed book. Poor J didn’t stand a chance with my genes, thankfully like me he is easy going and getting far more support in school than I ever did. I am hoping the support J receives will leave him with much better self esteem than I have had over the years as there are many times when I have not felt “good enough” or good about myself. As a child I lost myself in books and in the world of Enid Blyton, up the Faraway Tree and into lands beyond with characters as out of place on the Earth as I felt myself at times. “Always lost in a book” one teacher said years later “you would have got quite lost had it not been for the kind attentions of L” my best childhood friend.

Yet despite all these problems I have achieved and as my GP pointed out “achieved well”. The rest of the issues need addressing with routines and structures – something my ad-hoc nature rails against, but which is the only answer to the organisation. Lack of organization is the one thing I hate about myself – when my mind is in chaos the muddle spreads outside of me...... or is it the other way round
I am trying even if it doesn’t always appear so but J is cuddled everyday first. Monthly appointments at work are now booked in advance and written down for clients. An A4 pad is used to write myself tasks and cross out when done. At home I prepare clothes the night before so J’s uniform and my clothes are chosen, hung up and ready for us after washing. Finally my latest task is to shine the sink every night – it works – I feel far better when I get up in the morning if the sink is clean and empty.

Oral sensory issues

2010-09-28T02:20:00.000-07:00

Since J has been a baby he has been very sensory seeking requiring additional input to the world around him in order to cope. Even as a tiny baby he needed to cling onto my finger to sleep and as a 16 week old he was wriggling down out of a car seat until he was kneeling on the floor - totally unable to go anywhere else and enraged by his sudden inability to go any further. At 5.5 months J began to crawl and I was very proud......... for about 40 mins until I realised what this sudden ability could do for J. Suddenly he could get anywhere and suddenly I had to be behind him every step of the way to generally keep J safe.
As J got older we began to notice other issues, high activity levels being one and constant drooling being another. J dribbled/drooled until he was well past 5, as he got older the amount of drool decreased but he still required several changes of T-Shirt each day for his pre-school years.
Now at age 7.9, J is still having sensory issues with his mouth, mouthing objects has become a real issue and J is mouthing many non-food items including Lego, bottle tops, paper towels, pencils, sweatshirt sleeves etc etc etc. Food is also an issue and J will eat non-stop given the opportunity, this is now impacting upon his weight which is increasing too fast for his height.
Some time ago I said to J that I had noticed that he was always chewing things such as Lego etc and I asked him why he did this, J replied that it "felt nice" and I really thought no more of this beyond realising that it evidently gave him some sensory feedback.

Since starting in the Junior school though this sensory seeking has become an issue, J is chewing his pencil and paper towels and it is causing problems. His class teacher is worried because in addition to the pencil and paper towels J is also chewing the tiny lids from bottles of water and is concerned about him choking. I asked J if this was a problem in the Infant school too and he says it was which is interesting because I never heard about it. However, given the sensory issues he has had throughout life I am not surprised to hear this is the continuation of a problem rather than anything new.

So yesterday I ordered a chewy tube for J to use in school. There has been plenty of research into these and the consensus is that these "chewies" are beneficial for sensory seeking children in school as it helps calm them and so aids their concentration. I will report back to say if it does the same for J......

Consequences.....Or "keeping J in the classroom"

2010-09-21T11:57:00.000-07:00

A charming little habit exhibited by J in his less polite moments is to storm from the classroom in a huff when he does not want to do something or if an activity does not go the way he expects. This has been a problem from Reception year onwards. In the Infant school they tolerated this little habit, monitored it and found other ways to teach what they needed to. The Junior school however, is made of sterner stuff and J now has consequences for leaving the classroom. It is very simple - if J leaves the classroom in a huff he loses one minute of playtime. The knock on effect of this is that J is NOT first in the queue at the tuck shop for his pretzels. When you consider that J's other two passions in life are "being first" in any queue and "food" then I I think you have to agree that the Junior school have hit on a pretty effective strategy. The storms from the classroom are already reducing and it's only the third week of term. Now if only I can find a way to adapt this strategy at home..........

Battle Hamsters.......

2010-09-19T02:59:00.000-07:00

Last Christmas little girls everywhere went mad for Zhu Zhu Hamsters - sweet little chirping toy hamsters which could be fussed, dressed and groomed. They naturally has their own accessories and homes complete with hamster cars, houses and tracks. Even J was tempted and despite being a non gender bothered parent (J has a Baby Annabel doll - now sadly neglected) I declined to buy him one of these hamsters. I pointed out not unreasonably that he had his own real live hamster in thew shape of Dora and that these were girls toys. As J is at an age where you "don't play with girls toys" this seemed to settle the matter and we moved on with life.

Meanwhile somewhere in a no doubt luxurious board room, toy manufacturers were deep in discussion about the runaway success of their product. Zhu Zhu Hamsters were sold out everywhere and had been the "must have" toy of Christmas 2009. All around the country little girls were grooming and fussing over their toy hamsters and no doubt sorting out the track and play areas for their new "babies". Boys were opening whatever present they had and perhaps looking on with some envy at their sisters! Toy manufacturers were feeling a challenge........ "how" they thought "can we flog these hamsters to the boys out there"?

And then a bright spark realised that boys like battles, boys like armour, boys like crashes and action.

Ping!

"BATTLE HAMSTERS of all colours - green, brown, grey, mottled with symbols on their backs and a mean look in the eyes".

"But what can we call them"?

Zhu Zhu Hamsters as a name was out because of the connotation with girls toys and no little boy of a certain age would be seen dead with a toy which had such connections. And so they thought and thought and then thought some more before realising that battle hamsters would have a dead hard name denoting their years of dedication to battle and so Kung Zhu Hamsters were born.

J has wanted one since seeing the first advert - he now has two who both have armour and J plays with them non-stop. I can see a busy Xmas approaching and mindful of last year will be getting in early to prepare for a Christmas and a 20th December birthday. I think the Battle Arena will be a must.......

Snappy answers to annoying comments regarding autism.....

2010-09-05T04:15:00.000-07:00

With full apologies and acknowlegement to the people I nicked this from and adapted.

If you're a parent with a child on the spectrum, you've probably responded to the same annoying remarks and questions a thousand times. Here's a handy list of responses that...you'll probably never use out loud (but are fun to imagine using)!

1. He can’t be autistic -- he can talk! (or make eye contact, smile, engage)
And yet, amazingly, he’s still autistic! Y’see, autism is a spectrum disorder, and that means …

2. Oh, he must be SO good at maths! (or science or music)
Actually, his great talent is in memorizing and reciting lines from Sponge Bob or anything else which helps him communicate his wants and needs or emotions.

3. All he needs is more discipline, and he’ll get the message. You need to be firmer with him.
Yup, it’s true -- if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!

4. You poor thing, it must be so upsetting to have a child with a disability. (Thankfully nobody has ever said this to me about J)
Yes, it can be hard. And pity really helps me to get through the day and feel better about myself and my child. So…thanks so much!

5. Will he be able to go to college (or get married or hold down a job)?
Hm. Good question. By the way, has your daughter’s divorce been finalized yet? And I’m so sorry to hear that your son was recently laid off from his job…

6. I have a friend whose child was autistic, and she cured him!
Wow! So I guess she’s enjoying the millions she made after figuring out how to cure autism? I bet her second home is a yacht!

7. If he can’t behave properly, you shouldn’t BRING him shopping!
Wow -- that would be great. Should I fax you my grocery list, or send it by email? I’ll really enjoy the delivery service! (Actually I try my best to either shop online and get it all delivered or shop when J is at school)

8. We can’t include him in typical classes, it wouldn’t be fair to the other kids.
Hm, that’s an interesting perspective. So I guess you have a pretty big endowment to pay for all the law suits? That must be great!

Imagination

2010-08-28T06:57:00.000-07:00

Looks just like a box doesn’t it?

But add a pillow case tied to a coat hanger and the inside of the kitchen roll and you have a boat with which to sail the seven seas.

We even had fish

I love imagination – it’s great.

The playroom.

2010-08-23T23:40:00.000-07:00

A rapidly untidied playroom - hopefully rapidly tidied!

After two weeks away with his Dad and spending a lovely time in Wales with Nanna and Bapa J has returned home happy, healthy and lively. Oh how I have missed him - now he is back I feel complete again.

While J has been away we have had a spot of "Changing Rooms" and the spare room (full of junk and unloved) is now freshly painted and carpeted with a sofa bed, J's toys, and a rug with printed roads. J loves it - it's been done to try and give a distinct difference and feel between a room for play and a room for sleep. It's also been done to mark the fact that J is no longer a baby or small child but a big boy approaching 8 who is going into the juniors. As such it felt only right to give him a bigger boys room - he is delighted and the road rug promptly became a city with a police station and a zoo. The police station saw some use as driver after driver was stopped for speeding and thrown unceremoniously into the cells! I have made a mental note to steer J clear from a career in law enforcement for all our sakes.

Within two hours of J arriving home there were sweet wrappers in places there should not have been and sticky fingers everywhere. Oh well - getting organized in his absence was nice and housework can wait until we've finished playing.

I found the poem below several years ago and it sums me up perfectly.

I hope that my child, looking back on today

Will remember a mother who had time to play;

Because children grow up while you're not looking,

There are years ahead for cleaning and cooking.

So, quiet now cobwebs, dust go to sleep.

I'm playing with my child, and children don't keep.

Perfect.

The "Police State" City

Random thoughts................

2010-08-16T23:30:00.000-07:00

A few weeks ago I was informed that an application for Disability Living Allowance for J had been successful and with this came some back pay. With J away in Wales until next week (I am missing him sooooooo much) I have been doing a spot of "Changing Rooms" using the back pay. I am fortunate enough to have a spare room here and am hoping to create a play room for J in order to make a distinct difference in feel from a room to play and a room to sleep. At the same time I am looking at sensory lighting and relaxing colour for J's bedroom in order to make this a room to really relax and settle to sleep in. I am under no illusions that J will actually stay in bed because J is not like that but at least if the toys are out of the room it will curtail his activities somewhat. So the spare room has been painted and a carpet goes down on Wednesday after which I will offer the carpet fitters and extra £20 if they will help me get the heavy and bulky sofa bed up the stairs so that J's play room can have it's own little sofa.

We also have a new Hamster named Bramble who is tame and utterly gorgeous as you can see.

Bramble came from a lady near Colchester who is hamster mad and who breeds and homes very tame hamsters.

Drusilla my very naughty Tortie cat thinks Bramble is just delightful and spends many an evening sitting hopefully by the cage. Once the evening is over though Drusilla is unceremoniously evicted from the living room where the cage is and the door to the room is firmly shut. I am under no illusions about my cat.............

An application I made for re-housing has already been processed by Basildon Council. As they are still working on the applications for last November this is fabulous. My application has been processed because the form I completed regarding J was seen and assessed by the medical officer who has agreed we need rehousing on medical grounds and that J needs a garden. Having said that though there is a dearth of social housing and my priority banding means that it is likely I will be housed sometime in the next 7-10 years if I am lucky. However, the property we currently live in is coming down within the next five years (unless the coalition Govt decides otherwise) so we'll be re-housed then anyway. In the meantime J will have to continue being very active indoors or there is a park opposite. As J cannot be outside unsupervised this means I would have be with him - one reason why a garden with a tampoline he could go mad on would be great.

Finally and most importantly I had a phone call from the special educational needs team last week to tell me that J's case had been to their panel and that from September they will be assessing him for a Statement of Special Educational Need. I am over the moon about this as it will give J a guarenteed plan of support to help him access the curriculum in school. J's school has always been very good with their support but a Statement would ensure they receive the money needed to employ somebody specifically to be with J in school on a one to one basis. Brilliant!

So J - I am missing you and can't wait to have you home again. I know you are having fun with Daddy, Nanna and Bapa and am so glad you are enjoying yourself. I am looking forward to a cuddle with my darling boy but not looking forward to the first occasion when he loses his temper and stomps up the stairs.

Farewell Dora the Explorer

2010-07-06T03:39:00.000-07:00

Goodbye our little furry friend

This is a beginning, not the end

Off to Hammie Heaven you go

Away from cold and rain and snow

Sunflower seeds and peanuts await

Sunshine and laughter for our very best mate

(with thanks to a Fab :-) Mumsnetter's son who wrote this poem about his hamster when it died)

RIP Dora - a dear little hamster

J through the looking glass

2010-06-16T06:02:00.000-07:00

From a very young age J was fascinated by his reflection in a mirror – nothing very significant in that as most children are keen to look in a mirror at themselves. However, from about the age of 3 J’s mirror gazing became slightly different and very entertaining to watch. J would stand in front of the mirror and pull a variety of facial expressions – he would even practice crying sounds while watching himself. Naturally I put all this down to his tendency to show off and perform to an audience. I even looked fondly and thought “Bless – just like his Dad” at some of the more comedic expressions and confidently predicted a love of drama.

At the age of 7 J still does this “mirror” stuff and practices a big beaming smile among other expressions. When J feels he has done something wrong or if he feels I am stressed he will gain my attention and say “look Mum” and produce the biggest most beaming-est smile possible – it lights up his whole face and includes his eyes. It is identical to the one he produces when he looks in a mirror.

Today I attended an autism workshop looking at sleep problems in school-age children on the spectrum. As part of the workshop we watched a series of short films about autistic children and the sleep issues which affect them and their families. One showed a little boy of about 9 being asked to go to bed.

“Time to go to bed Zac”

“Nooo” was the response shouted loudly by Zac all the while he walked up and down in front of a mirror pulling a variety of expressions.

“Yes – you need to put your PJ’s on”

“No – don’t want to go to bed” again said loudly but more calmly as Zac became absorbed in this mirror gazing. He pulled several expressions and watched himself closely, sometimes practicing a grimace or smile again.

For me it was a bit of a light-bulb moment and H (the speech and language specialist) said that children with Autistic Spectrum Disorder find facial expressions and the world in general very confusing. It is not unheard of for them to “practice” the expressions they see around them in front of a mirror to try and make sense of them. In this way Zac could see the facial expressions which went along with his upset feelings around going to bed.

So J has been doing this mirror practicing to some extent too and I’d had no idea that it was significant as behaviour. To be perfectly honest I just thought J was a bit of an actor – practicing his performances prior to testing them out to their fullest extent on me. I was wrong but still feel his ability to “perform” and practice these things won’t do any harm in his drama group which starts tonight.

SNAP-tastic!

2010-05-30T05:09:00.000-07:00

After my rather melacholy post last time I promised J's Dad that this one would be much more positive... and it is.

When J was diagnosed there was a lady in attendance who is manager of the local special needs centre. Hilary set up SNAP with other parents in the 1990s when she realised how woefully inadequate the support services for parents of children with special needs were. Over the years SNAP has expanded and grown and now has it's own premises in the grounds of the old Warley Hospital. It is well used by families all over south Essex and runs a variety of courses and groups for parents and children. One of these groups is SNAPTASTIC a "stay and play" group aimed at children 5-13. At £3.50 a session it is very affordable and once the Disability Living Allowance has been agreed (not holding my breath on that one) will be a regular activity for J.
The session is based around fun and support for both children and parents, the centre is fully open and there are plenty of activities for the children. Upstairs in the meeting room there is seating, biscuits and tea or coffee for the parents. While the parents drink tea and chat the parent advisors circulate and are ready to offer support and advice as needed. Meanwhile downstairs in the playroom an army of staff and volunteers play with the children and supervise the SNAPTASTIC session.
J has attended only one session so far as they are not weekly and immedietly made a friend. A is 7 like J and also like J is on the autistic spectrum. J and A met at the door of the session and seemingly recognised kindred spirits in each other. Once the door to the playroom was opened they were off to run, jump, dress up in the costumes and have fun. The supervisors and volunteers had a hard job just persuading them both to stop and have a drink as the sweat poured off them both. Everyone commented on the fact that they seemed to be long lost friends who had known each other all their lives! It was great to see and J did not look for me in a whole hour. While J was playing hard downstairs I was able to wander upstairs to drink coffee and talk with other parents including A's Mum. It was so helpful to do this as I recognised so many similar problems between J and some of the other children. In many ways it was a bittersweet experience, J had so much fun and that was wonderful to see, but in seeing him enjoying the session I also recognised the fact that it was with these special children that J fitted in perfectly well - a confirmation of the diagnosis if you like.
So June approaches and J has been booked in for more SNAPTASTIC sessions and also the drama group which starts in June too. I have booked myself onto a series of four workshops looking at various aspects of daily living - sleeping, eating, dressing and toiletting all focused on the needs of the school age child on the autistic spectrum. This means that there will be times when we not only attend the centre twice in one week but on occasions twice in one day.... I can't wait.

Sometimes

2010-05-22T11:44:00.000-07:00

Sometimes I find J hard work

Sometimes I get frustrated and cross with him and then I feel guilty.

Sometimes I get fed up with saying “Sorry” to all and sundry for his poor behaviour and lack of impulse control

Sometimes I would give anything for the ASD and ADHD to go away so that people could see the lovely little boy underneath it all.

Sometimes I want to scream about invisible disabilities - a child in a wheelchair is clearly disabled and allowances are (well should be) made. Nobody understands about less visible challenges to a child's actions and behaviour or even considers them.

Sometimes I want to scream at the smug parents with their well behaved children who watch J with an irritated eye.

Sometimes I feel frustrated that the rest of the world does not understand.

Sometimes I wish J came with a volume control

Sometimes I feel I am not up to the job of parenting J and wonder if he would be different with a more competent and organized Mum.

Sometimes the stress finds me in this self pitying mood which needs to be kicked into touch.

But thankfully this IS only “Sometimes”. Thankfully MOST of the time I am more positive than this.

Unfortunately this is not one of those times.

Autism and Aspergers Myths

2010-05-03T12:25:00.000-07:00

1. Children with Autism never make eye contact?
FALSE

2. Inside an Autistic child is a genius?
FALSE Most children with Austim will exhibit significant delays in some areas of mental processing and a percentage exhibit above normal intelligence.

3. Autistic children do not talk?
FALSE - the vast majority have language development.

4. Children with Autism can't show affection?
FALSE, This can be difficult for most Autistic children but not all.

5. Autism can be outgrown?
FALSE. Autism is a lifelong condition but with help Autistic people can lead productive and happy lives.

6. Children with Autism cannot learn?
FALSE. It can just take a little time to figure out the best way to teach Autistic children.

7. Autism is rare?
FALSE

8. Asperger Syndrome is caused by poor parenting?
FALSE. Asperger syndrome is believed to be caused by a Genetic Componet.

9. People with Asperger Syndrome lack imagination?
FALSE. People with Asperger Syndrome typically possess vivid, creative and unique imaginations just look at the famous people with the condition. example: Satoshi Tajiri the Creator of POKEMON or even Hans Christian Anderson a famous Author of children's stories such as 'The Little Mermaid'

10. Autistic people are all alike?
FALSE. Everyone is different but there are some common problems with things such as difficulty with social communications.

11. Autistic people don't build relationships?
FALSE. Ok it's unlikely an Autistic child might be a very popular social person but it is very likely they will have a solid relationships with people with shared intrests. Plenty of Autistic people who marry will have good solid relationships.

12. Autistic people are a danger to society?
FALSE. Autistic people are not dangerous but some may exhibit violent behaviors but these are almost always caused by frustration, physical or sensory overload and its very rare they act violently out of malice.

FACTS

1 in 150 individuals has an Autism Spectrum Disorder
Autism is a form of autistic spectrum disorder or ASD. Other forms of ASD include Asperger syndrome, Childhood Disintegrative Disorder and Pervasive Developmental Disorder.

80% of all individuals with Autism learn to talk.

Each person with autism is a unique individual with special talents and gifts.

Children and adults with autistic spectrum disorders have difficulties with everyday social interaction.

People with Autism are often keen to make friends but due to their disability find this difficult. Their ability to develop friendships is generally limited as is their capacity to understand other people emotional expression.

Autism is a lifelong developmental disability with NO cure.

Some people with autistic spectrum disorders have accompanying learning disabilities but everyone with the condition shares a difficulty in making sense of the world

People with Autism who have an extraordinary talent are referred to as 'Autistic Savants',
only about 0.06% of Autistic people are 'Autistic Savants'.

Many thanks to Cheryl Ellison for the above.

Conversations with my son.

2010-04-27T11:40:00.000-07:00

Last night I had the following conversation with J who started by telling me why he didn’t want to go to school today.

“I don’t want to go to school because I don’t like assembly”

Assembly has been the topic of conversation a few times with J so I dug a little deeper.

“Why don’t you like assembly J”?

”I don’t like assembly because I am bad and I got sent to the office”

“What did you do that was bad”?

“I can’t behave myself and I am naughty”

“What did you do that was naughty”?

“I can’t behave myself”

"Yes but what exactly did you do"

"I was bad"

We went round in circles like this for a few minutes with J seemingly unable to explain what he did that was bad or naughty or misbehaving. I am always wary of putting words into J’s mouth but can quite imagine the difficulties which might occur if you sit J in a largish hall with echoing sounds perfectly designed to overhype his senses. So I asked him if sitting still was a problem and back came the affirmative. “So” I said “you don’t like sitting there and you end up getting up and fidgeting”?

“Yes” said J “and I got sent to the office and so I cried-ed”

And then came the heartbreaker

“I am a fake boy”

“What’s a fake boy J”

“It means I am no good and I am stupid”

“No you are not stupid and you are good”

“No I am a fake boy and I need to be sent back to heaven”.

Cue lots of tears

Somehow I suspect his self esteem is rock bottom and that is not good. It stands to reason that if everyone around you is sailing along and you are not, if everyone else finds life a breeze and you don’t that you might start to wonder why.

I am now on the point of wondering how I explain autistic spectrum disorder and ADHD to J.

Maybe I start with “you are special because you think differently to other children”

Or maybe I watch a bit of the "Young, Autistic and Stagestruck" series with him.

Or maybe I find a book which explains his differences in a gentle way.

Whatever the choice I eventually make the fact is that at some point I will have to have that conversation with him rather than leave him floundering and wondering why everyone else can manage X, Y or Z and he cannot.

Young, Autistic and Stagestruck!

2010-04-24T00:30:00.000-07:00

Young, Autistic and Stagestruck is a Channel4 programme following a diverse group of youngsters with one similarity, all the children and young people taking part are on the autistic spectrum like J. As J has so recently been diagnosed I was keen to see the programme and see what similarities the participants had with J.

The parallels hit me in the face immedietly the show started as we saw Mollie a little girl with a BIG personality also on the autistic spectrum. Programme One opened with Mollie and right away I saw the likeness with J, I watched knowingly as she raged "I hate you" at her Mum, I recognized the self harming (hitting herself on the head) when raging and in Programme Two watched her head bang in temper as J still does at times and heard the same "er er" noise which J makes. J's Dad was watching some 170 miles away and we rang each other during virtually every commercial break "oh my goodness" and "did you see"? The similarities between Mollie and J were amazing and for the first time I could see how and why J fitted on the autistic spectrum.

Since seeing the first programme I have joined the Facebook group dedicated to the programme and after posting on the wall about the parallels between J and Mollie was touched to receive a message from Mollie's Mum. Mollie and J are indeed very similar - like peas in a pod in some ways but also poles apart and I don't envy S (Mollie's Mum) one little bit. However, Mollie's actions are more marked and her behaviour is far more challenging than J's. Mollie's rages can be daily and last hours or even days, J's are shortlived and he can (at the moment) be distracted (thank goodness for ADHD - even his rages are unfocused). I was even more in awe of S when she told me her older son has cerebal palsy but understood when she said she could cope with 20 of him but only 1 of Mollie! Truely the autistic child can be a challenge.

I am so grateful to S and P (Mollie's parents) and to Mollie for agreeing to take part in this programme which is opening up to a wider audience an understanding of what parenting the autistic child can be like. The rages, the intelligence, the talents (hearing Claire sing was lovely), the kindness and gentleness of Andrew, the fierce intelligence, anger and sadness of Ben who made me laugh out loud in the first episode by saying tartly (in response to the interviewer's question "Are you autistic"?) "Of course I'm autistic, what a stupid question, we could have done this interview over the phone". Ben's intelligence masks anger and an inability to cope with social communication which makes him say "I want to die". He knows he is different and does not like it. Other children had different problems, one used to smear faeces which must be a hideous problem to deal with, others had been diagnosed at a late stage with a parent saying "I always knew he was different but nobody would listen". Varying children and young adults of varying ages - all demonstrating the similar traits of the autistic spectrum. I can't wait for the next installment....

and now what?

2010-04-21T00:01:00.000-07:00

So – a month has elapsed and people are aware of the diagnosis which we received for J. The responses have been overwhelmingly supportive towards us and I am beginning to think towards the immediate future. In among the positive stuff are the various “other bits” the comments that “ he doesn’t seem autistic” and “ are they sure”. These comments irritate me as they are similar to all the disbelief that goes through my own head. Yes “they” are sure about the ASD diagnosis – they spent over an hour observing and assessing J in addition to the reports from previous assessments both in school and at home. There is no doubt regarding the diagnosis and the only unknown factor is exactly where J lies on the spectrum. Even that is relatively easy – J is definitely at the high functioning end but not considered to meet the criteria for Asperger Syndrome.

In looking at J I notice the things I have always noticed but which in the context of his ASD diagnosis make much more sense. The echolalia for example – the stock phrases from films and TV programmes he uses in his communication, the echoing and repetition of phrases again and again so that I sometimes want to snap “be quiet”. Not a good sign.

More than anything I notice the fact that his verbal skills mask a little boy who finds social situations and rules utterly confusing. On first meeting J he can appear to be very communicative (and he is), he will talk the proverbial off a donkey but dig a little deeper and the confusion will surface and this is behind his conflicts with other children when they occur. I am aware that at 7 all children can have their moments when social skills fail them. For J though this is more of a regular occurrence as he lives very much in the “here and now” hence the rages when things do not go his way.

Watching J with his cousins recently was distressing as he failed to accept and understand their desire to change from the game he wanted to play to another game. They wanted to play Charades, and they wanted to act out film titles and book titles. It was totally beyond J even with the help given by L his older cousin and he went into a bit of a meltdown. We left and went home where he could play with Lego, use the Wii and generally understand and predict the outcomes.

I notice the meltdowns and the outcome of these, J will rage and scream, he will tell me “I hate you” and he will hit himself on the head in frustration.

If the surrounding environment is too loud and echoing J may (but not always) hit the floor with his hands over his ears.

So – all in all we are watching and waiting to see what the immediate future holds. I’d be lying if I said I wasn’t nervous about this.

A walk in Spring.

2010-04-09T09:14:00.000-07:00

Today it is beautiful and a real glimpse of the lovely weather to come (hopefully). I had a day off work, the sun was shining and J was ready for a walk. Accompanied by Nanny we headed off for Dunton Nature Reserve and bought duck food for the lake birds and an ice lolly for J.

The ground was muddy in places and J found plenty of opportunities to sink his feet into soft mud - opportunities which were not wasted!

The blossom was in full bloom and everything was bursting with life and promise of riches to come. The birds were in fine form and the air was filled with melody while the rabbits scuttled around half hidden in the densely wooded areas.

J looked and listened and noticed different things - the stony remains of a house post and trees which had been felled and which provided a home for all manner of creatures.

J was keen to get to the lake most of all though.

J fed the ducks, geese and coots with the bagful of food he had. Once this was empty then he harrassed nanny for the remainder of the bird feed she had.

He found some very hungry birds at the lake and they were pleased to see us. There were one or two punch ups between geese and ducks and a few between warring males and females. In the end though I think all were fed happily and the bags were packed safely away to be swapped for a lolly on their return to the visitors centre.

We continued the walk all around the lake and I enjoyed the chance to breathe in fresh air and watch J as he ran, fell, laughed and cried at various times. We left the lake behind after watching J wobble and nearly lose his balance while standing precariously at the edge of the lake. I asked J if he had tried to fall in the lake on purpose - the answer was an emphatic "No" but then "I just wanted to try and fall in Mummy". Thankfully he failed in that little endeavour.

We headed back to the car and through more muddy puddles. The visitor's centre gave a J a lolly in return for his empty duck food bags and a second lolly "to put away for tomorrow". Now we are home and the jeans, trainers and T-shirt are in the washing machine. Ben 10 is on the telly and J is lounging on the sofa eating crisps. All in all a good day I reckon.

The Natural History Museum

2010-04-07T02:11:00.000-07:00

Yesterday we took J up to London and visited the Natural History Museum.

J really enjoyed the train journey up there and made the most of a window seat.

The weather was lovely and the queue for the museum was very long much to J's disgust. However, the queue moved quite quickly and we were soon at the front.

J was fascinated by all the dinosaur bones and fossils. We ran from fossil to fossil scarcely taking anything in. J doesn't really "do" concentration but neither do most 7 year olds in such an exciting place. It was very crowded and we had to manage J with severe sensory overload. Generally J found it fun but the constantly bursting balloons were a big problem especially when we went to the restaurant. The first bursting balloon madr J jump, the second one some 30 seconds later led to fingers in ears and the third one about 20 seconds later saw J clambering under thye table for safety.

J really liked this Opthalmosauraus and

we had to take several photographs of him with it.
The Opthalmosauraus is a type of Icthyosaur and there were many fossils in the museum of this
particular creature.

Once J had been totally overloaded with sensory stuff we took him outside for a much wanted ice-cream which he thoroughly enjoyed as you can see. Lacking any wet wipes (always the organized mother me) I did the one thing I always said I would never do - wet a tissue with saliva to clean him off much to his utter revulsion because "now you've put your germs all over me Mummy".

After this we embarked upon a two milish walk across London and through Hyde Park to get to Soho Square and various chain type restaurants for supper before getting the 19.40pm train back to Laindon and the car. J was exhausted by then and fell asleep within half an hour of getting into bed (a record). It was after 9pm but still an improvement upon some of his other evenings. I guess he just needs a good long walk every day.

Letters I would like to write..........

2010-03-31T04:20:00.000-07:00

To my new neighbours

The bin store is located at the back of the building just behind the bottom of the stairwell a few yards from where you abandoned your full rubbish bag and the flattened cardboard box. I can see from the full bin bag that putting rubbish in such a receptacle is not an alien concept. Perhaps you would like to take another bin bag and fill it with the coke bottles, bread crusts, ciggie packets, dog ends etc etc which appear to have been abandoned on the stairwell (and on my door mat) since you moved in.

I am giving you a week to settle in by which point I would hope you will have cleaned up after yourselves – if not I will ring the Council.

Oh and welcome to the area.

To Basildon Council

The big H.O.L.L.Y.W.O.O.D sign in the Hollywood hills denotes glitz and glamour. A similar sign in 5 ft letters spelling out the word B.A.S.I.L.D.O.N on a small rise alongside a busy road does not denote the same glitz and makes Basildon look even more ridiculous than it already does on the eyes of the world. Lighting up the letters at night is just unnecessary and screams “chav”.

Why? I mean...... just why?

To Everyone who has said “you must be relieved to have a diagnosis for J”

Thank you for all the support we have had as it was a real shock to hear “ASD and ADHD” (even if not totally unexpected). Yes I am relieved that J has a diagnosis and a label to hang all his little quirks and odd behaviours on, I am relieved that this will be the kick up the bum which the Local Authority needs to provide him with that elusive Statement of SEN which will lay down in a legal document what his educational needs are and how they will be met, I am relieved that J will finally get the support he needs.

But actually....

I am not bloody well relieved; I didn’t want to hear “ASD and ADHD”. I wanted to hear “a bit immature but nothing which won’t correct itself as he gets older”. Not for anything in the world am I relieved to hear that my darling boy has a lifelong disability which will make his life much harder than if he did not have ASD and ADHD. I know there are plenty of people who do well in life and who are on the autistic spectrum – Einstein for example is suspected to have been autistic. But I don’t recall him having an easy life nor any of the other “autistic geniuses” who have been quoted to me since we were told J’s diagnosis.

And finally.....

To Dru

Dora the hamster is a pet, a friend and part of the family. She is not now or ever a plaything, a meal or a source of entertainment. Please could you stop sitting next to or even worse “on top of” the hamster cage. Admittedly Dora does not help matters by being a one hamster escape artist – all I can say is that she must have 9 lives pretty much in the way you have to have survived this long in your company.

D-Day

2010-03-27T10:53:00.000-07:00

Finally at age 7 and after 2.5 years of assessments, support in school and varying meltdowns we have been given a diagnosis for J. That diagnosis is Autistic Spectrum Disorder with co-existing ADHD to add to the fun. While getting a diagnosis is a relief and a reason for all J's little quirks it was also a shock. The confirmation of all the suspicions I have had (and hoped were incorrect) was like a punch in the stomach and only 48 hours later do I feel like I have begun to absorb it all.

J is autistic - not high functioning autism or Aspergers as I was suspecting because his social skills are actually not advanced enough to meet the criteria for those - that was the punch in the stomach.
Recently in school there have been several incidents which have culminated in J assaulting other children much to my sadness and disbelief. There was also a dreadful meltdown during the car journey home one evening after I commented to J that he looked tired and shouldn't use the Wii that evening. J raged and kicked and screamed then finally took a shoe off, held it to my face screaming "I hate you - do you want a piece of me"? This is a line from Toy Story, a film not known for it's violence and I was shocked by the raging.

After J was born I suffered severe post-natal depression which made life very hard, I was constantly tired, had no desire for life and caring for J was difficult. Recently I had begun to wonder if J's problems were down to my post-natal depression. There has been various research looking at how PND in mothers impacts upon babies and especially baby boys. This was enough to make me feel desperate and to start a bit of self blame. I had even got as far as making an appointment with my GP to discuss a referral to the children's mental health team. I reasoned that if my PND had impacted upon J negatively then the attachment must be all wrong and that this was my fault. I even attended a lecture about "Disordered Attachment" and listened anxiously to all the signs of good attachment as opposed the disordered attachment. I was relieved to note that J and I ticked all the boxes for good attachment but still felt my depression must be partly to blame.

On Thursday 25th March we attended the appointment at the Social Communication Clinic, to be honest I wasn't sure what to expect. I thought it would be a short appointment with the promise of further assessments and follow ups. In fact the clinic already had the previous assessments done in school by the speech and language therapist (SALT) who specialized in social communication problems. A different specialist SALT was present at the appointment along with a paediatrician and a worker from SNAP (Special Needs And Parents). The SALT took J off to play some games with him - he went willingly and during this time the paediatrician took a long and detailed history form myself and J's Daddy. We talked about everything, all the quirks, the prolonged headbanging as a toddler and small child, the obsession with washing machines as a small child, the problems in school, the hand flapping, J's distractability and attention problems, the rages, the lack of eye contact at times. The paediatrician asked if J had been overly interested in Thomas the Tank Engine - a question I was at loss about until I read about the love autistic children often have for Thomas.
Finally after nearly an hour the paediatrician asked us to wait outside while they discussed the outcome of the assessment and also the observations of the SALT who was still playing with J. It was then that I realised we would actually be getting an answer (possibly) that day.
We waited anxiously - part of me wanted a diagnosis of high functioning autism or Aspergers as it would provide a label to hang all J's problems on, the other part of me did not want that at all - no parent wants to think that their child who is already finding life difficult will continue to do so.
J joined us happily and talked about playing games, he appeared to have enjoyed himself. Finally we were called back in, I left J with his Daddy in the waiting room I wanted to be able to hear without interruption. J was not happy about this so squatting down to talk with him I tried (and failed) to get eye contact. Finally J accepted that he would stay in the waiting room and as I walked down the corridor with the paediatrician she asked me if I had noticed that J had not made eye contact with me but had looked beyond me. I knew then that we would have a label for J's behaviours.
The SALT asked me how I coped as she had spent an hour with J and was exhausted. Then the paediatrician told me that in her opinion J had Autistic Spectrum Disorder and probably also had ADHD although she would need to do more assessments to confirm the ADHD. Apparently ASD rarely exists as a stand alone problem and there are usually co-existing problems. The paediatrician suspects that in J's case this co-existing condition is ADHD.
The worker from SNAP stepped in to say that she was impressed by how we had coped with J and it appears that far from causing J's problems he is all the better for having had good parenting (Mummy will take a little pat on the back and a sigh of relief here). SNAP will be making contact with me over the next week to arrange a visit to their centre. They will support me in applying for DLA, they will support me with behaviour management.
The paediatrician says she wants to see J again in six months and although I am still shell-shocked it feels a relief to have an answer finally. Now the fun begins - the pressure will be applied to the local SEN board for a Statement of SEN and I am going to push them for full-time one to one support in school so that J is always supported and helped.
I am proud of J and I love him so much, despite such difficulties he is on the whole a gregarious and sociable little boy

No Dancing please......

2010-02-10T04:53:00.000-08:00

In a move sure to delight his Bapa, J has decided that a future in dancing is not for him and yet it all started off so well a few weeks ago.

Last Monday I received a call from the school, it was the third week of lessons and the school were phoning to say that J did not want to join in the dancing and just wanted to go home. I collected J and asked him about the dancing,

"Why" I asked "don't you want to do the class anymore"?

J just shrugged and mumbled something about "being too tired".

Further questions and discussions were ignored or answered with short replies - he was "too tired" it was "silly" and "I don't want to do it any more".

Oh good - so glad I struggled to pay that £20 for the sessions...... not a huge amount I know but by the time I have paid £40 for school dinners and a further £18 in Breakfast club fees for the days I work and the £5 snack money due and the money for anything else they spring on me it doesn't leave much.

A little while later it occured to me that I had forgotten to give J a bottle of water for the class and I had a bit of a lightbulb moment. "J, did you want to come home because you didn't have a bottle of water". J looked at me and nodded. "So if you have a bottle of water you will want to go next week" I asked. J nodded again and so on Monday I made sure he had a bottle of water and arranged that he would be collected at 4pm after the dance class.

At 3.25pm my Mum phoned to say she had just had the school on the phone and "could we go and collect J as he didn't want to do the dancing and was being disruptive". The person added rather unneccessarily "and he didn't want to do it last week either". A shame I didn't get the call because I know he didn't want to do it last week either. I just thought that was because he had no water and this week he does have water and so I wanted to see if that made a difference - evidently it did not.

So - we tried and it's the first after school activity he has done so maybe I was expecting too much but I thought the sensory seeking bit of him would love the dance movement along with the other boys there but it has not been the case.

Now - do I shell out £35 for the football coaching after school on a Thursday which J also wants to attend? Or will that go the same way? Not that I can afford this yet anyway but by the summer term I will have it

J struggles to listen though and it will only take one sharp comment for him to feel silly and not want to go again. He did seem to be enjoying the dancing so I do wonder if someone has said something - a comment or a criticism to make him feel he can't do it. Either that or he takes after his Aunty M who as a child joined everything just long enough to get the uniform and then left!

The First Kiss......

2010-02-05T23:42:00.000-08:00

Yesterday morning as I was helping J prepare for school he suddenly blurted out "Mummy, yesterday M kissed me and I don't know why". This was said in a mock aggressive tone as he blushed and looked away before adding "it was disgusting and I'm not going to let her do it again".
I asked J "did she kiss you on the face"? and J replied "she kissed me on the cheek and it was horrible".

J and M have a rather sweet little friendship with J enjoying someone who understands "Ben 10" and who is not adverse to some noisy and energetic playground games. M is a very sweet little girl who obviously likes J and who fought off allcomers for a seat next to J at his 7th birthday party. I have a wonderful photo of them both seated next to each other at the party. M has her arm possessively around J and her head rested on his shoulder with a sweet smile. J in the same photo has his eyes cast downwards with an embarassed grin. Immediately after the photo was taken J made a comedy fall from his chair and lay on the floor which he told me later was him "falling on the floor in love". To protect her identity I won't publish the photo of J and M here but it is lovely and rather sweet. Instead we have two different pictures coutesy of Google Image search.

Yesterday when I collected J from school I asked him if M had kissed him again and the answer was a very boyish "yuck - no way". So that's alright then - I suspect that in just a few more years his answer might be rather different but by then M will be a pretty young thing who will have outgrown Ben 10. I am not sure the same will be true of J..............

5th Annual Poetry for Brigid Event

2010-02-01T23:55:00.000-08:00

Feel free to copy the following to your blog/facebook/website and spread the word. Let poetry bless the blogosphere once again!

"New Kitten" by Shirley Hughes

WHAT: A Bloggers (Silent) Poetry Reading
WHEN: Anytime February 2, 2010
WHERE: Your blog
WHY: To celebrate the Feast of Brigid, aka Groundhog Day
HOW: Select a poem you like - by a favorite poet or one of your own - to post February 2nd.
RSVP: If you plan to publish, feel free to leave a comment and link on this post. Please pass this invitation on.

Being a Mum the poem I have chosen comes from a children's book by Shirley Hughes.
Deciding on a poem was difficult as J has lots of books with lots of poems but this one seems appropriate for the time of year as does the illustration above so I will read it with J later....

COMING SOON

"Spring is coming! With promising patches

of blue; and sunlight suddenly catches

A gleaming rooftop, where sparrows in batches

Flirt and flutter and pipe up snatches

Of hopeful song;

And windows are opened on stuffy rooms,

There's a shaking of mats and a flurry of brooms.

And it's lighter in the longer afternoons,

And boys on bikes whistle cheerful tunes.

It won't be long!"

Busting for a Hamster Part 2.

2010-01-23T06:37:00.000-08:00

And so it was decided that Dru's senses were becoming just a little too attuned to the hamster cage.... "busting for a hamster" didn't even begin to describe her. Even worse was Dora's curiosity about the noises coming from the side of her cage. Little did our little Hammy understand that the twanging noise was the sound of Dru's claws plucking the bars like a guitar.... even the odd nip from the sharp teeth of Dora did not dissuade Dru from stalking the cage like Elmer Fudd ..... she didn't quite say "be vewy vewy qwiet.... I'm huntin' hamsters" but may as well have done.

Finally the decision was made for Dora to have a new and more cat proof cage and after a lot of looking around we finally settled on this - the Rotastack Space Command home for spoilt hamsters. Let me tell you that putting this cage together is no picnic and the air was blue by the time I'd finished - but finally I was able to introduce the cage to both Dora and Dru. Dora was impressed and Dru was perplexed.

While Dora explored using all her senses Dru explored too using all of hers...... yet no matter how she looked and sniffed and listened she could not find an entrance to the cage and only minimal bars to twang

...... and so she gave up and lounged on the floor looking fabulous.

....before wandering off to the bedroom where found the quilt on the floor because I hadn't got around to re-making the bed.

And Dora the Explorer is now safe and J is happy. He loves Dru and he loves Dora.

Ballet shoes (or not as the case may be).

2010-01-19T10:38:00.000-08:00

J's hands and feet show a degree of hyperflexion which make some tasks difficult for him but which as I constantly remind him do not stop him trying. One of the things the paediatrician who saw J was certain about was that he would never make a ballet dancer - a fact which was no surprise to me given J's clumsiness. This fact was also a considerable relief to his Ba-pa in Wales who dreaded any idea of J becoming the first male dancer in the family.

So - just after the school returned to normality last week J returned home with a printed flyer about dancing classes to be held in the assembly hall every week from 3-4.... and J wanted to go. Naturally he did not want to attend last term when they were free but this term when they are £20 (which for 10 weeks of lessons is not bad) he does want to join in - typical. And so last night J attended the first class and I waited for him to return home saying he had hated it.

I returned to the school to collect J several minutes early and this gave me a bit of time to watch the dancing class through the window. Many of J's classmates were there and a surprising number of boys too who were naturally all competing to outdo each other in the dance session. I noted that M who is J's little girlfriend was there too.... and partnered up with J - holding his hand and giving him a prod now and then to ensure that he kept up with the routine.

J appeared to be thoroughly enjoying the session and the only blip was when a loud part of the dance came along which involved shouting and clapping. When this bit came I observed J fall to the floor with his hands over his ears to protect them from whatever sound was bothering him. M didn't blink an eyelid and merely danced round J - stepping over him and continuing with her bit of the routine - evidently she is used to his funny little ways. After a few moments and when the noise had subsided J was up and taking part again - it was good to see him happy and enjoying the rhythm of the music.

The dance teacher says that J has good rhythm and that within a few weeks he will know the routine (and I am certain M will make sure he knows it too). For his co-ordination it will be great - he needs to both watch and listen to learn the routine which will require a certain amount of concentration. Only good can come from this activity and I will be watching how he does to see if there are external benefits in other areas..

And just for his Ba-pa if he reads this there is a picture below,

Hope

2010-01-16T02:13:00.000-08:00

for good news about my auntie.

A Walk in the Snowy Park

2010-01-08T05:09:00.000-08:00

And so the snow continues here and J's school remains closed. This has the knock on effect that I cannot get into work although I went in with J yesterday to be sent home again as J cannot sit in the doctors surgery due to the current Swine Flu epidemic.
So today we went for a walk in the park and it was beautiful. I stopped my moaning about the weather and took in the beauty of it all instead - even the so called "sink estate" I live on is improved in appearance by the white glistening snow which has fallen in the past few days.

J discovered that frozen puddles feel nice to skate on.......

..... and that snow is slippery when there is ice underneath

We went to the park where J was delighted to discover that he was the only child there and had the playground all to himself. So fun was had on the swings..................

.............. and on the slide too. Later we tried to build a snowman but found the snow too dry and powdery to build with.

After the walk we went home to a warm, purring bundle of feline contentedness and to hot chocolate and a warm house.

Frazzled

2010-01-06T10:09:00.000-08:00

What a day.... alarm at 06.40am but Dru woke me at 5,40am to let me know she was hungry and needed feeding - staggered downstairs into the freezing kitchen, put kettle on, fed Dru, wandered into icy living room, checked hamster cage - no she still hasn't eaten her way out beyond my repair job. Switch on plug in heater and after a cup of coffee decide to wake J and prepare him for the fact that although we have a dusting of snow it has not yet reached "school closure" proportions. J reacts predictibly with a half acted, half serious meltdown - there are a few tears but very few, these increase however when E's Mum phones to say E will not be going in. Help J with dressing, decide he needs wellies and not shoes for the snow, bundle him up in his coat but cannot find gloves anywhere - have bought at least 3 pairs this year but all have vanished. Get J to school, school path is full of children saying "oh no it's open" in disappointed voices. J runs into the playground and despite no gloves promptly gets involved in a snowball fight pausing only to come and warm his hands by shoving them up the back of my jumper. Cold hands on warm skin - nice.
Thankfully Mrs M opens the classroom door early, at this point I realise I have forgotten J's shoes and so Mrs M tells him to get his PE shoes from his PE bag, I then remember that J's PE shoes are at home as he wore them after his school shoes split last term - realise I am a very shoddy mother. Rush into town to pay bills and buy a pair of PE shoes, attend GP appointment where I agree with Dr M that I am fit enough to do the 5k run in March if I train for it, Dr M tells me the key is not to train for the 5k, do the 5k and then stop exercising and that exercise is beneficial for emotional health too!
Go back to J's school to take in shoes and apologise for the fact that J may well have been in socks all morning. School tell me that due to snow they have decided to shut the school from 1pm - it is now 11.30am. Rush to Asda and get the shopping, no £1 coin for trolley, queue at customer services for coin, grab trolley and get the usuals - plus washing powder as have run out. Get shopping home and bring it up to the flat in two journeys, then return to the school and collect J who is overjoyed to be going home.
Take Paracetamol for headache....
Make a curry from the leftover casserole and enjoy seeing J eat sweet potato while not realising it's sweet potato as it's mixed in with curry - J pronounces it "yummy".
Watch snow reach blizzard proportions and realise that J is not likely to be attending school tomorrow - ring Mum who comes to the rescue again - of course she will have J while I work. Thanks Mum.
Get in bath for nice relaxing soak - within 15 mins am joined by J who bangs bathroom door open, strips off clothes and climbs in with me (oh well the first 15 mins were nice).
Back downstairs I watch as the hamster eats her way through my repair job to her cage and squeezes herself out through the hole - Dru watches with interest but can do nothing as I am there. Put Dora in her ball and make another repair to the cage.
Check electricity to see the plug in heaters have taken nearly £5 in cost over the past 24 hours leaving just over £5 in credit - a trip to the top up shop tomorrow if the weather is okay and I can get there. Yet another bill and extra expense I really don't need.
It's freezing here (apparently going to be -6 tonight) and storage heaters are even more expensive than the plug in heaters - dig out hot water bottles, add blankets to the bed - put plug in heater on low and shut bedroom door. J will sleep in with me again tonight and at least I will know he is warm. Not looking forward to tomorrow when today's snow will have turned to ice.

Bed times and Dramas

2010-01-03T03:08:00.000-08:00

I have posted before about J's total and utter sensory seeking approach to falling asleep. This has got worse with his increasing interest in the Cartoon Network and Ben 10. For those not initiated into Ben 10 a quick explanation is that one day Ben finds a mysterious wrist watch type device called an Omnetrix which attaches itself permenantly to his wrist and gives him the power to transform into various aliens all with a variety of superpowers and thus save the Earth from whatever impending doom it is facing at any given time.
J now has his own Omnetrix bought ~~when J carried on and on and on~~ during a weak moment in Sainsbury's toy aisle.
Christmas made the situation worse when a close friend (thank you S) bought J a boxful of Ben 10 aliens and various attachments for his Omnetrix. Now each evening when I put J into bed, wrap him securely in the duvet and kiss him good night he settles for all of 2 minutes before leaping form the bed and creating a variety of bumps and squeals while saving the Earth. Aaaagggh!
Threats and pleas to calm down and go back to bed fall upon deaf ears and usually at least 2 hours of "earth saving" go by before J's goal is achieved and mankind can sleep safely in their beds once more. At this point J usually settles down with a sigh and a book and at this point may fall asleep ....... unless the earth is threatened once more when he summons up the energy (just HOW does he manage this I am unconcious by 9?) to defeat them once more.
So - this week J is back at school, this week I have to try and get J to fall asleep at an earlier hour as the lie ins are finished until next weekend. So - this week I will be taking a tired little boy to school most mornings - the school will achieve wonders with J every morning but by afternoon he will be finished and tired with no energy..... until bedtime.

Busting for a Hamster

2009-12-30T01:53:00.000-08:00

When J was around 4.5 years old he began to express the desire for a pet hamster. Being J this request was made in its own individual way. I can remember clearly the two of us sitting on the sofa sharing a book about pet animals. The book talked about cats. dogs, budgies, goldfish and hamsters as pets and little companions. J promptly showed an interest in the hamsters and stated that "I want a hamster". "Do you J"? I asked. "Yes" said J "I am busting for a hamster". Needless to say the expression "busting for a hamster" went through the family like wildfire and became a stock phrase to be used whenever anybody badly wanted or needed something or other.

At age 6 J finally got his wish and Dora the Explorer came into our lives, a sweet, tame honey coloured hamster who had been handled from a young age by her breeder. Dora has proved to be an ideal pet for J who participates in cleaning her cage and in handling her. Dora is utterly endearing and once she is awake each evening becomes tuned in to the sounds of the room and shows an eagerness for interaction. Calling her name brings her to the side of the cage and hearing the door of the cage opened has her scrambling for the exit with haste.

Someone else who is also "busting for a hamster" is Dru my 2 year old Tortie cat. In retrospect bringing a hamster into a house containing Dru was not one of my more sensible decisions. Dru is a magnificant hunter and has shown herself to be a very good mouser and bird watcher over the past year. So Dora is in a certain amount of danger whenever she is not in her cage. To get around this we have a plastic ball which Dora can be shut into allowing her to explore the house in safety - Dru watches from a distance but somehow cannot always make the connection that Dora is within - my wonderful Dru - she may have a strong hunting instinct but is evidently not blessed with brains as she ignores the plastic ball and Dora within and goes back to watching the cage.

This morning I stumbled out of bed at around 6.40am, went bleary eyed downstairs, fed Dru, made coffee and shuffled into the living room to find something mindless to watch on TV while I sipped coffee and came to. Some minutes later Dru appeared and immedietly crouched down on her belly, then widening her eyes she shot towards the welsh dresser and began stalking something beneath. "Bless" I thought, "she's seen a spider or something". But as Dru became progressively more frenzied in her stalking I began to wonder and worry, grabbing Dru I shut her out of the living room, she promptly pushed the door open and resumed her wild eyed stalking. I grabbed her again and unceremoniously shoved her out into the hall shutting the door firmly. I went back to the living room by now very wide awake. I switched on the main light and called out in my best "hamster enticing " voice (yes there IS such a thing) "Dora" and out from under the welsh dresser popped a little honey coloured head with bright black eyes, moments later she was walking confidently across the living room floor towards me. I scooped her up, made a fuss of her and placed her back in the cage noting the large hole she had chewed in one of the plastic tunnels. I am not sure how long she had been out but she drank and drank from her water bottle so I am guessing she was out a while. The hole was rapidly patched up and then an enraged Dru was permitted entry to the living room once more - she went straight to the cage and noted Dora within - this did not however, prevent her from resuming her stalking of the hamster under the welsh dresser - bless.

I just know there's a hamster round here somewhere

Christmas 2009, money, Star Wars and Indiana Jones.

2009-12-29T00:55:00.000-08:00

Christmas was spent in Wales this year and J had a great time unwrapping a mixture of birthday presents and Christmas presents. J did very well with PSP games, Meccano (hey - those bendy fingers are certainly getting some exercise), DVDs and a Playmobil Police Station which took me just short of two hours to put together. In addition to this J received around £60 in birthday and Christmas money which promptly began burning an enormous hole in his pocket.

Back in the summer we enjoyed a week long camping trip with friends and relatives. Among the other campers was M who celebrated his 11th birthday during the time we were away. M received a similar amount in birthday money and like J immediately began to expereince the same pocket burning effect. A trip was made into Bridport and after a short while in the toy shop M emerged clutching an enormous Star Wars Lego Kit. J's eyes nearly popped out of his head as he saw Chewbacca, Darth Vader, Yoda and any number of other Lego figures included. More than anything else in the world at that moment J wanted that Lego kit. Sadly M refused (very sensibly) to open the box when we arrived back at camp saying that he would wait until he got home. J has been talking about the Lego kit ever since so there is no prize for guessing exactly what J wanted to spend his money on at first opportunity.

So yesterday we made an early trip into town and to the big Toys R Us store to find that virtually all their Lego stock had sold out. I had rather anticipated this and had discussed it with J prior to going. I suggested that if they did not have the kit that he bought something small and waited a week or so. J readily agreed but when it came down to it was of a different opinion. But then if you are 7, if you have what seems an enormous amount of money and if you were in the equivilant of paradise surrounded by toys of all kinds would you say "okay Mum they don't have the thing I want so I'll come back next week"? No? Thought not!

So a decision had to be made in the Lego aisle. I flatly refused to allow J to spend £60 on a Star Wars spaceship which would fall apart at first play and in the end J settled on an Indiana Jones Lego kit which created a plane, a jeep and which contained several characters, there was even enough money left over to buy a Playmobil Police car to go with the Police Station J unwrapped on Xmas Day.

So yesterday morning I arrived home with J, the shopping and what I anticipated to be 10,000 pieces of Lego and an instruction book. Obiously the Lego had to be put together before anything else was done (thank goodness I had no frozen stuff) and the box was opened and three packets of Lego fell out - yep - loads of pieces but thankfully nowhere near as complex as the various Star Wars lego kits I have put together. I got to work and 90 mins later we had an army jeep and an impressive looking plane - yesterday afternoon the plane had become "a submarine Mum". Great!

J's birthday

2009-12-21T04:51:00.000-08:00

Yesterday J was 7. Yesterday I gave thanks for the pleasure and good fortune I have in being able to hold and cuddle my darling boy as I know other parents do not have that same luxury. And yesterday we had the second birthday cake in a week following the first at J's party held on 12th December.

Going back 7 years I think of the day J arrived, following a night of contractions (but little progress) and a full moon so bright I could actually read by the light which was cast through the skylight of the room. I was in hospital and labour was being induced because two weeks after his due date J was showing no signs of making an imminent appearance into the world. Prostin gel was given and then some hours later a second dose and....... nothing - no contractions. The third dose DID stimulate contractions but they were sporadic and variable in strength. The fact that they occurred every 4 mins overnight was a drag but a necessary evil for the onset of labour. I did everything I had learned and taught other parents, I stood, I rocked, I bathed, I knelt on all fours to no avail. Nothing relieved pain or made the discomfort any easier to bear. Then at 4.00am everything just stopped and I drifted into sleep. At 9am the doctor appeared to see how far I had progressed...... I hadn't progressed at all.

At 3.30pm I went to labour ward and at 16.06 J was born by caesarean section weighing in at 9lb 6oz. The baby I had wanted and waited so long for had arrived and was so handsome. J was my amazing Christmas gift for 2002 and a wonderful birthday present for his Nana who had been born on the same date 67 winters previously. My great big healthy baby boy was so welcomed by many people ..... and right from the start he enjoyed a cuddle with his Mum. Seven years following that first cuddle we had the following conversation:

J. "Mum, I can do anything I want on my birthday can't I"
Me. "Within reason J yes you can".
J: "Oh good - can I sleep in your bed tonight".
Me: "Okay then".

So last night I cuddled J and remembered that first precious cuddle in the hospital. But now J hugs me back and says "I love you my beautiful Mum" and last night I had the sheer pleasure of watching my beautiful boy as he drifted off to sleep next to me - my cup, as they say runneth over.

The Divine Mrs M!

2009-12-11T23:19:00.000-08:00

There should be an award for kind, understanding and experienced teachers. Those that have been in the job for years but who demonstrate everyday that the job is still as fresh and exciting as it was in the beginnings of their career. Add in a dollop of big personality and a "no nonsense" approach, you have the divine Mrs M who has been ~~coping with~~ teaching J since the beginning of September.
J and Mrs M have been aware of each other almost since he started attending the school. Mrs M runs a Rosary group from time to time and J amazed me by attending it - even if he did not quite grasp the whole concept. Mrs M also amazed me at around that time .... by grabbing J for a hug one morning and saying "God Bless him he sits so nice and quietly at the back of my Rosary group". I wanted to grab Mrs M and say "J sit's quietly"? And "are you sure you have the right child"? But she DID mean J and he WAS the right child and indeed he DID sit quietly in the Rosary group.
Mrs M is from Northern Ireland with a heavy accent and she never fails to make me laugh when dealing with J. Most afternoons when I collect J, Mrs M will be standing at the door saying "okay, bye bye darling" as he leaves. On other occasions she just stands at the doorway in mock horror saying to me "just take him - take him home". At another time when J told Mrs M he was "going home now" she raised her hands in a "praise the heavens" kind of way and stated "Hallellujah".
Mrs M also understands J very well indeed and is aware of his difficulties in some areas, she asks a lot of J at times and pushes his limits as is needed but is also ready to cuddle and reassure where necessary. Yesterday J went with his class to the local shopping centre where they were due to sing Christmas carols. As I was working this was attended by Nanny who said that J was excellent, did all the same actions as his classmates and joined in the singing. In fact his only moment of anxiety was when the alarm started sounding from the local jewellers (no it had not just been held up - just a blip I think). As soon as the alarm started to sound Mrs M had J by her side and pulled him to her in a reassuring manner. And J coped with the alarm.......Brilliant.
Later the class returned to the school where I and several other parents were preparing for the school Christmas Disco (160 portions of hotdogs and chips). Once the food was nearly all out Mrs M appeared in the kitchen bemoaning the noise made by 160 children - she was surely jesting. "Why" I asked "after a full week in the classroom around these little darlings would you NOT want to hear all this noise Mrs M ....;. and in any case surely you should be in the middle of them and break-dancing". Mrs M looked at me with a twinkle in her eye and stated "I did all that in my youth - now are there any spare chips"?

Later I took J home... he had fallen over in the disco and was asking for home, cuddles and to curl up on the sofa. He was in fact exhausted - too many late nights and a very busy week at school had taken their toll. As I cuddled him I smelt his head - he smelled purely of Mrs M's perfume - as though he had been cuddled up to her for a bit. I asked him "Did Mrs M cuddle you today" - "Yes" said J " she looked after me on the coach back to school".

Mrs M - here's to you - you are a wonderful teacher and while J gets fed up with you at times I think you are great.

Sensory seeking and weighted blankets at bedtime.

2009-12-09T12:17:00.000-08:00

Have been having some evil thoughts regarding J at bedtime. He is about as "sensory seeking" as it gets at bedtime and Scott (the very nice OT ;-)) suggested trying a weighted blanket or toy (draught excluder type thing) to place over J and see if this would help calm him. I have now found a website which sells these weighted blankets - they are various weights. I asked Scott if I could get the sort of weighted blanket which would pin J to the bed.... Scott said that wasn't the idea. Damn!

.... and (totally off topic) once again Dru has been up the Xmas Tree.

Idleness, drums and the fidgets

2009-12-08T08:43:00.000-08:00

Over the past week J has surprised me by suddenly becoming capable of putting on his own socks. This has been a constant problem for him over the past few years as socks are fiddly items to apply to feet and J has struggled. On Sunday J and I went swimming and had a great time especially as J is proving to be an adept swimmer. After our swim we went to get dressed before heading off with his cousins for some chocolate induced fun. J could hardly wait to get out of the changing rooms and before I knew it was dressed (if not quite dry) right down to socks and shoes on his feet. My appointment with the OT flashed before my eyes as I recalled telling them that J "cannot manage socks". This was a few short weeks ago and yet here was J having proved that when the impetus is there he can quite perfectly manage them. The words "idle little monkey" wandered through my mind and connected themselves to J! All this time I have been dressing him when the lazy little tyke could quite perfectly manage himself. But then I recalled the persistant palmer grip, the difficulties he has definitely experienced in school and which have been noted by everyone who works with him. Just because he can now manage does not mean this has always been the case, however, quite obviously matters have improved but the darling child was not going to attempt any task that he could get his mother to perform for him.
So we now have a change to the morning routine. No longer do I assist J to get dressed, instead I lay all his clothes out for him and then "race" him to see who can get dressed the quickest, J always wins AND his clothes are on the right way round too. Not bad for a child with "bendy fingers" who "can't do it Mum". A quiet word was had with the school about this latest progress and a request to continue encouraging J's independance - when he goes swimming on Thursday he will be doing his own socks.

This afternoon I went to see J in his school play. J's class did the story of the Nativity and J has been proudly telling me for weeks that "I'm an actor Mummy". Further questioning elicited the information that he was "being a Roman soldier" and then came the killer.... "and I am the drummer too". Bless the school, they have taken my son - the noise king - and entrusted him with a drum in the school play. No way was I going to miss this - so 1.20pm today found me queuing outside the school with Nanny, the first parents/grandparents there in fact. For too long I have rushed out of work to try and catch J's assemblies and plays at school and I am ALWAYS last there and always right at the back catching scarcely a glimpse of J. This time I was first and determined to be right in the front row in full view of J. This is what I cut my hours for... to be around and visible for J. And oh was I visible. Right in the front row, right in the middle and right opposite J and his class mates.
For the first time ever J was not accompanied in by a teaching assistant and walked in proudly with his classmates carrying a drum, he was dressed in a costume and looked very proud of himself as he lined up with the other Roman soldiers. The Nativity was beautiful and J was fabulous with his drum... he was also very restrained and only used the drum when it was called for in the script. Towards the end of the show he started to get what I call "an itchy bum" and began to fidget - lifting himself up and treating all the visiting parents to the sight of his pants. Eventually tiring of the show he left his classmates and brought himself over to my side. Mrs M the fierce but wonderful class teacher (who was sat next to me) said to J in her broad Northern Irish accent "Now J - you need to sit on the floor by Mummy and don't move". And do you know what... he hardly did move. I really MUST get Mrs M round at bedtime.

Giving J a "label".

2009-12-06T05:59:00.000-08:00

I have been pondering a bit since my letter from the community paediatrician - his impressions were as posted before, dyslexia, dyspraxia and social communication disorder. As the OT said "that's quite a label" and it's this thought which gives me some disquiet. J definitely has some problems which were picked up at nursery. To me though he is and always was just J with all his little foibles and idiosyncracies. The problems he displayed in nursery were exactly the same as the ones he displayed at home but in the context of a crowded nursery and now a classroom can be irksome and hard to manage for the teacher and teaching assistant. This is why J has so much 1-1 support and I am grateful he has this. Seeing the paediatrician was supposed to be another opinion for the education service - a different perspective and a way for them to add to the picture of J's needs to see if a Statutory Assessment needs to be carried out. What concerns me is:

Children with any sort of label have a set of behaviours which apply to that label. I wonder how much of this is the actual underlying problem and how much of it is a child behaving in the way expected of him for the diagnosis.
The SEN label may become applied right throughout his school years with his educators having a lower expectation of him as a result. This is fine if his educational attainment would be low no matter what but it is NOT okay if he has potential which is missed as a result of the lower expectations.
The other issue is that J is a carbon copy of me and except for the reading issue I was exactly the same at school. I found it hard to read social situations too and as a result was bullied and totally unable to cope with this. The difference is that although I saw educational psychologists I did not get any sort of label as I might have done now. I read well but coasted through school as I struggled to apply myself - once I was adult enough to do so I never looked back and studied various subjects throughout the next 20 years including gaining a degree.
J has always achieved some things later than others. He spoke very late but babbled almost constantly to himself in a nonsense language showing that language development was there and would come...as it did when he was 3.5 years old. And dyspraxia? J crawled at 5.5 months old - hardly dyspraxic wouldn't you agree?
Children seem to be given all kinds of labels these days. I've lost count of the number of children diagnosed with ADHD (and with which I was determined the paediatrician would not label J ). My friend had a daughter with ADHD - true ADHD - she rarely slept longer than 2-4 hours and even as an adult still requires medication.

When did difficulties in behaviour and in skills become worthy of a medical diagnosis? I am not someone who says these things do not exist - they have always been there but have we gone too far in the desire for a label? I think we might have done especially if you consider that once a label is applied it may well be there for life and affect the child as an adult trying to live a normal life with the label of whatever around his neck.

So despite what the paediatrician has said I am placing myself firmly on the "let's wait and see" line. Despite my previous post I am keeping an open mind on dyslexia following the response from a blog reader. It's possible J could be dyslexic.... I don't think it's a case of ABT (Ain't Been Taught) as if this was the case then few of his classmates would be reading either and all indications are that this is not the case judging by the number of "free readers" among his peers (free readers are those who have progressed through the reading program and are now allowed a free choice of books to read and feed back on).

I am happy for J to have a label if it's the right one and if it will guarentee him the support he needs in the classroom. Otherwise I'd like the medical profession to keep it's labels for those who need them and I'll continue seeing the OT service who are offering practical support to J and the SENCO who is assessing and applying various techniques to help J in the areas he struggles. I am equally happy for J to go into the social communication group (something which might have helped me as a child) especially if it helps him to make sense of his world and means he can build up good lasting relationships with his peers.

Dyslexia? I am not so sure......

2009-12-05T04:21:00.000-08:00

One of the issues raised by the community paediatrician was the possibility of Dyslexia. J at almost 7 cannot read beyond simple words...longer words tend to be mixed up and sounded backwards hence the suspicion of dyslexia. However, some of the signs suggested by the Dyslexia Institue do not apply to J. He knows the days of the week although he needs to check what comes before and after each day sometimes, he knows his numbers even if he is behind the rest of his peers with numeracy. He is also ace at following instructions for Lego cars, figures and rockets... something I think many dyslexic children would find difficult. This morning J has constructed a Lego Bionicle Robot from scratch using all the instructions and his "bendy fingers", which have been used as an excuse in the past week to NOT even try to do other tasks. He succeeded without any input from me and was rather pleased with himself when he had finished. Well done J - your Mum is proud of you.
Now I just need J to apply himself with equal enthusiasm to writing and other tasks which require he uses his "bendy fingers". He has been informed that the excuse "I can't do it because my fingers are extra bendy" will not wash with either Mum or any of his teachers. "Bendy fingers" are a problem but don't excuse him from trying.... and as this photo shows, his "bendy fingers" can work quite well.

Take one Christmas tree.....

2009-12-04T08:06:00.000-08:00

Take one Christmas tree and add one Naughty Tortie who likes climbing trees.............

...... and you get.....

.... an extra decoration for the tree.... or "Cat in a Christmas Tree". The very beautiful Drusilla who at nearly 3 has not forgotten her kittenhood and J thinks she is great.

You have to love logic.......

2009-12-02T07:36:00.000-08:00

"Hmmm" said J as he delved down the freezer on his return from school. "This is the last one" he noted holding aloft a Cadbury's" choc ice on a stick" which I hoped to hide from him until after bedtime. "Yes it's the last one" I agreed, "would you like it"? Fat chance of him saying "no it's okay Mummy I want you to have it". So J now has his Cadbury's "choc ice on a stick" sitting in front of the TV and Ben 10. As the living room carpet is new I have decreed that all food is to be eaten at the table but have weakened if he sits on the sofa and does not move.
"Yes" says J "because the carpet is new Mummy"........ and then came the logic...... "but when it's old it I'll be able to drop things on it won't I".

The banging sound you hear is me whacking my head in despair.

Dyslexia, Dyspraxia, Social Communication Disorder.

2009-12-02T01:45:00.000-08:00

It's been some time since I blogged about J, a good few months in fact - a few months filled with indecision, change, helplessness and sadness at times. There are good things too, finally after many years of waiting we have been allocated a council property. The drop in rent is massive and I am just so grateful.
In September it became increasingly apparent that J was struggling even more than before and I made the decision to ask the LEA to carry out a Statutory Assessment of his educational needs. As any parent who has been through this process knows - it is fraught with obstacles and hurdles. I have not even asked for a statement of special educational need, just an assessment to see if J might require one now or at some point in the future, you would think I had asked for the Earth given the forms, the reports from the school and the additional evidence they are asking for. All this to decide if they will even carry an assessment out.

J is currently receiving 15 hours of one to one time in school, his reading is not even at National Curriculum level 1, writing is too difficult for him, social skills are well behind his class mates and he is struggling. Hearing your child say "I am no good..." is heartbreaking - especially when that child is not yet 7.

As a result of all this I made the decision to drop from full time hours at work to 16 per week making me entitled for the first time ever to extra tax credit and free prescriptions. I will not be as well off but I will be around to collect DS from school every day and also get him into some sporting activities. He loves swimming (something which once held fear for him) and goes twice a week - once with school and once with me. I am told that trampoline lessons might also be good for him so will be booking those in after christmas.

J has now seen an Occupational Therapist who continues to see him weekly and has also seen the community paediatrician whose impression was Dyslexia, Dyspraxia and Social Communication Disorder. As the OT said "quite a label". Personally I am continuing along the "let's wait and see" line with J as he has areas of utter brilliance. He is very bright (according to his teachers) and rarely forgets anything factual he is told. Getting it all down on paper is an issue but one I suspect might be overcome with a little creative thinking.

Bedtime is still an utter nightmare - especially since J discovered Ben 10. Evenings are now filled with J swinging from the light fittings (almost) while he saves the world. I should be grateful that my little superhero wants to protect me but I am NOT. I am then the horrible Mum who tells him to go to bed.

Scott the very nice OT (J's mummy ponders if he is single ;-))suggested that J is very sensory seeking and said there were various things to help with this. One idea is a bean filled comforter or long cuddly dog/cat/pillow type thing which could be laid over J at bedtime and provide some of the sensory feedback and so help calm J at bedtime. I tried with Sammy Dog a long bean filled draught excluder (always used as a bed companion) last night but Sammy Dog is too light so I suspect we will need something more specialized.

Watch this space methinks. Am willing to try anything.

It's not Aspergers or High Functioning Autsim

2009-07-25T08:23:00.000-07:00

Thank goodness for that, I was really beginning to worry that my little boy was destined for a diagnosis on the autistic spectrum but as the weeks and months have gone on so it is less of a likelihood. J is still experiencing problems in school and the latest meeting with the SENCO teacher brought me the unwelcome news that he has slipped back behaviorally in the classroom. He is also at least 2 terms behind the other children in the class and his progress is being measured with a system called P-Scales which is used with children not yet up to National Curriculum level.

Mrs N J's lovely class teacher explained that she was not sure why his behavior had slipped backwards but wondered if it had more to do with the possibility that the social skills of the other children had moved forward more and so J's less well developed social skills stood out. J continues to have problems in social situations and struggles to read them leading to issues with the other children on occasions. In recent weeks there has been a fight between him and another child because the other child was ignoring J and J did not know how to cope with this. It ended in J's words with "he spitted at me and I spitted at him and then we fighted"(repeated word for word) "but I didn't hit him". My thoughts were "actually I think you DID hit him because your teacher saw you do it". We had a long chat about how to manage if you feel cross and upset and about how hitting other people is wrong and not a very nice thing to do. I have a fabulous book called "A Volcano in my Tummy" which helps children to explore anger, I use it a lot at work. I used one of the more easily understood worksheets with J to explore his feelings when he gets angry. The worksheet was the outline of a body and asks the child to colour in where they feel their anger. J coloured in the hands and explained that he gets "fizzy fingers". We used this as a basis for exploring what actions he could take when he got his fizzy fingers which didn't end with himself or anyone else getting hurt. I also told him the anger rules which state that it is okay to feel angry but that he shouldn't hurt himself, others or damage property. We looked at other actions he could take instead, like running round the playground if it was playtime (as it was when the fight occurred) or counting to 10 in the classroom and repeating this if he still felt cross afterwards. In the classroom though it is easier as his one to one supporter is there every morning. Mrs N says that she would not be able to manage J in a whole class situation without that support.

So - no Statement of SEN, at only 2 terms behind J does not meet the criteria. I am anxious about this as J definitely struggles academically and socially. He will have a new one to one supporter next year the lovely Mrs M being moved to another child. J will be working with Mrs L instead who he already knows from Gym Trail ( a class he attends to help improve his fine motor skills). His new teacher Mrs M is a long serving member of the school's teaching staff and a stickler for the rules, there is no doubt who is in charge when Mrs M is in the classroom and she won't put up with bad behaviour. Luckily for J she thinks he's cuddly and cuddles him at every given opportunity. I just watch and think "you'd better be keeping that cute face kid" as it might JUST save you next year.

School Meeting and an incident in the playground.

2009-03-24T10:11:00.000-07:00

Today I and J's daddy met with Mrs F the school's SENCO and had an update about how J is doing in the classroom. After the past few weeks with really positive responses from J to the phonics flash cards I was quietly confident that J's performance in the classroom had improved. I was right to feel confident as "everyone has noticed a huge difference" - finally it appears that J is settling down and beginning to concentrate - the school's investment in 15 hours of one to one time a week for J has paid dividends and he is starting to move forwards. Reading has improved and so has writing as J can finally see the point of concentrating on it. Other aspects of his time in the classroom have improved too - he is sitting for story time on the carpet and eagerly participating in listening and responding in an appropriate fashion. I am so relieved.

Sop what about the Statement? Mrs F has said she is torn between not wanting J "labelled" but equally wanting to "protect the one to one hours which are working for him". A Statement of Special Educational Need would lay down J's educational requirements in a binding document - this means the hours he currently gets would be protected until he reaches the stage where he no longer needs or requires them.

There are still concerning aspects - in the main J's sensitivity to certain sounds. A trip to Colchester Zoo today was almost cut short when J refused to enter the toilets because of the hand dryer. Thankfully the nice man cleaning reached up and switched the dryer off - J then went into the toilet happily. It was the disabled toilet - we always use the disabled toilet so that the dryer is under our control and nobody else will enter and use it while we are there. Today though even this was not good enough for J and only the fact that it was switched off enabled him to use the toilet.

So just as I see enough signs to deem J's behaviour "spectrum like" something else happens which turns this on it's head. Two days ago at school J was running around in the playground before classes started for the day. As often happens there were younger brothers and sisters running around and just before we were dur to go round to the classroom J and one of these smaller children collided - neither had seen the other. Being much smaller the other child promptly fell to the ground banging his head - J's facial expression was shocked and then traumatized and he ran off - sitting down by the back wall he sobbed hysterically. I tried in vain to comfort him and explained that this was an accident and that accidents happen to all of us sometimes but J would not be comforted - getting up he started shouting "I want to go home, take me home Mummy". I had to physically restrain him from leaving the playground and eventually carried him (no mean feat believe me) into the school's reception area where the other child was sitting with his Mum and a cold compress. J was absolutely hysterical by this time - even the other little boy's Mum saying "it's okay - he's alright" and "don't worry" would not calm J down. The school were great (as always) and Mrs M (J's one to one worker) came round to help comfort him. The school dinner lady also helped by telling J that he could "choose lunch off my special menu". By the time I left he was still crying but was calm although I was most certainly NOT. I arrived at work drained and emotionally shattered - thank goodness for my lovely colleagues who understood. Half an hour later I rang the school to see if J was okay to be told "oh yes he's fine and has even been into assembly".

I think I can safely say that J does not have the "detachment from empathy" that many autistic children show. So back to the sensory integration delay type diagnosis then....

Mother's Day and Lego Star Wars

2009-03-20T23:16:00.000-07:00

This weekend is Mother's Day and a time I give thanks for my wonderful J as I am so aware that there are many women out there desperate for children who don't have the luxury of their own J. I am so grateful for J because even if he does turn my hair gray sometimes he also manages to move me to tears occasionally as well. Yesterday J's school held a Mother's Day assembly and for the first time ever J was saying something on his own. Not that he told me this of course - oh no I had to find out from his class teacher the wonderful Mrs N who said "oh you MUST stay for assembly because J is very good". Cue a frantic phone call to work "I am going to be late". Thankfully the colleagues in on a Friday are all mothers themselves and totally understood.The assembly was beautiful and the children were fantastic. J was the other side of the hall (surrounded by teaching assistants as is usual) and frantically waving to me with a big grin on his face. The other classes sang songs and read poems about how wonderful Mums are. And then it was the turn of J's class - they sang a song and then J and several others stood up, they were all holding paintings done of their Mum. One by one the standing children said "Thank you Mum for...." and then it was J's turn - loudly and actively he raised his voice and shouted loudly but clearly "I LOVE YOU MUMMY". Oh I was sooo proud. Finally all the children sang a song called "You Are So Beautiful" while two little girls handed all the mothers there a daffodil. Not a dry eye in the house and a testament to the hard work of all the staff and children in putting it together. Mrs R the school's head can be rightly proud of her school.

LEGO STAR WARS

I have always had an innate dislike of the realistic and graphically violent computer games which involve one player (or more) shooting, maiming and killing other characters. The ones my brother owns are horrifically realistic looking and the scary thought occurs that in the hands of someone unstable they could very much muddy the waters between fantasy and reality. In the hands of children the negative psychological impact does not bear thinking about. I have always been grateful therefore that J shows great interest in the computer but little actual obsession with game playing although he does like the ones on the Cbeebies and NickJr websites. I rest easily with those though as they are very much aimed at young children AND in most cases feed into the National Curriculum in some form or another. Many of J's class mates own DS Lite systems, Nintendo Wii consoles, Playstation 2, 3 or an XBox. J owns a VSmile console aimed at 5-8 year olds. It's robust and takes J's rather ham fisted handling with ease unlike a much more expensive DSLite console. The games are all based around learning and J enjoys them on an occasional basis.

Recently though when J's Daddy was here we went out for an evening to some friends. Their son who is 11 very generously gave J a Lego Star Wars computer game. This was a massive hit as J is currently very interested in Star Wars - and I suppose Star Wars is fairly simple to a 6 year old - there is no gray area for any of the characters - they are either goodies or baddies. I won't mention that from the the moment J received this wonderful gift he spent the rest of the evening saying "can we go home" as he wanted to load the game onto the computer NOW!

The next day the game was duly loaded and J and his Daddy spent several frustrating hours trying to work out how the characters moved and what to do. It was the cause of some friction between them and several arguments ensued. I tried and failed to act as peacemaker but eventually left both "boys" to it and reflected upon who might actually be the child!

Anyhow - Lego Star Wars is wonderful. Not only does the character the player adopts actually appear invincible - returning to the game almost as if he never left but the "baddies" when fought break into wonderfully clear lego pieces - not a drop of blood in sight and no suffering either. J though is obsessive - Lego Star Wars is the first thing he thinks about when he gets up in the morning and the first thing he wants to do when he gets home from school. I am letting him play and as the week has gone on the time at the game has decreased. For J it's wonderful and something he can talk to his friends about when they rave about their various adult consoles. Lego Star Wars is a hit on most of these consoles too if the games in the Argos book are to be believed - it appears as a best seller on all of them. So I am guessing that more than a few of his class mates know exactly how wonderful the game is. And for J who can find social situations difficult it gives a very valid means of communication and helps him socially.

Phonics flash cards.

2009-03-14T04:07:00.000-07:00

As I have posted before, one of my biggest anxieties about J is that he struggles with reading and writing. The writing I feel will come with time but reading is such an important life skill that to see him struggle is a big worry. Without the ability to read so much else will be closed to him so I have always encouraged books and we have many favourites that J loves. These books are read again and again to the point where J knows the story back to front and can "read" the story to me by sheer memory. School books though are a different matter - lots of joy in looking at the picture and telling the story based upon what he sees but when I ask J to try and read the words he loses all interest in the book and wanders off to do something else. After the conversation with J that I posted about in my previous entry I felt desperate.

Some time ago I bought a set of Phonics Flash Cards from my local supermarket - they were inexpensive, bright and colourful - the perfect way of engaging J i felt. Wrong - he showed no more interest in these than in the books and so they went away.

This week I got them out again and to my surprise J showed enthusiasm - we took the cards out and I encouraged him to choose one and he did. He then sounded out the letter and read the simple words on the back by sounding them out. I was so proud and gave him masses of praise. J's Daddy is here for a few days so he was able to give big encouragement too. With the promise of a trip to the bowling alley today if J read another card we were off - J went through several cards. J gets the simple words easily but struggles with the trickier phonic sounds, the cards allow for this though and I feel that if we spend a bit of time each day using the cards we will be well away.

This morning he is at the Bowlng Alley with his Daddy and I will meet them at 1.00pm for a trip to the cinema to see Bolt - the latest Disney adventure about a dog who thinks he is a superhero. Personally I think the only super hero in the cinema will be J who struggles but is getting there anyway. Am a really proud Mummy this week - and I will be taking the phonics cards in when I meet with Mrs F (SENCO) and Mrs N on the 24th March so that they can see how he is doing - might suggest putting them in his book bag each day so that he can use them in school.

"On the spectrum somewhere......."

2009-03-06T00:02:00.000-08:00

It has been a difficult time for J (and me too). As I have posted on this blog, J finds certain aspects of his school life difficult and confusing. J's school have been fantastic about this and have put in lots of one to one time with him out of their funding.

This week J has been upset about school - I had a heartbreaking conversation with him on Monday evening (accompanied by lots of tears from him) about school work. It's "too tricky", "they keep making me do tricky work" and even worse "I'm no good". Hearing your child describe themselves so negatively is terribly sad.

The application for a Statement of Special Educational Need goes in very soon and the school's SENCO says that there is more than enough evidence in the application for it to be accepted. Following this (as I understand it) there will be a Statutory Assessment which will include J being seen by an Educational Psychologist etc. I asked Mrs F (the school's SENCO) outright what her opinion of J was. I acknowledged that she has no medical training but said that I would value her opinion as she experienced lots of children with special needs. Mrs F was a bit non-committal at first (understandably) but eventually said that she feels J lies "on the autistic spectrum somewhere". I would not disagree with this as the autistic spectrum is very wide (there is even a female school of thought that ALL of the male species lie "somewhere on the spectrum" - and I wouldn't necessarily disagree with that either). Where J lies within the spectrum though is open to debate. I don't feel he shows typical signs of Aspergers Syndrome as he is actually very sociable (but can find social situations confusing) and obviously he is not severely autistic (verbal diarrhea as opposed to little or no speech).

Mrs N (J's class teacher) has been off for two weeks following a family bereavement, now she is back I am awaiting an appointment to meet with both her and Mrs F to look at the application for the Statement and to discuss how J is doing.

I await their opinion with interest. One thing that IS apparent though is that I need to be around for J much more than I am currently. To do this I will need to reduce my work hours significantly. Reducing slightly would be fine BUT would just make me worse off financially. Amazingly it seems I will be better off financially if I cut my hours in half as this will mean I get rent and council tax paid. Amazing that working such reduced hours will make me financially better off - says a great deal about the level of wages paid in this country.

It has been a while.........

2009-02-14T23:54:00.000-08:00

It's been a while since I posted my last blog - mainly because so much has been happening in our lives and I haven't made time to sit down and write. J and I have moved into a 3 bedroom house which is lovely and has lots of space for all J's toys and best of all our cat. Droosie joined us a few days after we had moved in having spent a couple of days at "Stalag luft Pussycat" a local place which calls itself a "cattery" but in no way at all compares with the wonderful Purrfect Guests in Dorset which Droosie is used to. At Purrfect Guests there are photos of all the regular guests on the walls (they have a beautiful one of my previous cat Grace) and Kim or Clive (Guest) ask what your cat eats and always have (or can get) what food the cat is used to, they even provided a stool for Grace to help her climb up onto the cat activity perch when she stayed there as a very old lady. Stalag luft Pussycat though is very different. On my arrival with Dru I was asked what food she ate "oh Sheba or that As Good as it Looks stuff" I said. "No we meant wet or dry food" came the discouraging response. Having agreed "wet food" with them I then followed them down into the depths of the grounds past rows and rows and rows of cat pens - evidently this place "packs em in" during the summer. Dru was found a pen right at the very bottom which was at least within a shed type construction and warm. She remained there for only three days but I have had to promise her "never again" as she has bitterly listed all the failings and the lack of pampering she was used to at Purrfect Guests.

Dru has settled in very well to her new surroundings and best of all it's on a really quiet road so she is able to go out again - something she loves doing. In the recent snow she was in her element and thoroughly enjoyed watching J and I construct a snowman and then having a closer look.

J is still having a few difficulties at school - his reading concerns me as I feel he just doesn't "get it" and most books he brings home are read either from memory or by looking at the pictures and guessing the words. When shown the words out of context he struggles. I am awaiting a further meeting with the school to discuss the application for a Statement of Special Educational Need. More than anything though I am anxious for him to "get" reading as without this so much else will be closed to him. Currently I am considering investing in a programme called "Headsprout" an online phonics based reading programme which takes children from non-reader to reading at the level of around 8 years. It's expensive but might be worth it if I think J will sit and concentrate on each "lesson" of around 20 mins. The trial lessons have been moderately successful in that J likes computers and enjoys sitting and playing with different programmes. The "Rocket" theme of the Headsprout program is also a hit. It's an American site with American pronounciations of words but that is immaterial if it works for J. A speech therapist I know raves about it and used it with all her children who can read well with no problems. The other positive aspect of this is that J would have daily practice with learning phonics and blending them together which due to pressures of staffing and workload I suspect he does not get in school. I read daily with him at home but he struggles with concentration and sitting down to practice reading is not high on his agenda. Sitting down and being read to or "reading" a story to me (from any book where he has memorised the narrative) is a big hit though and we spend time each day doing this. Headsprout works out at about £100 for the full program of 80 sessions - at just over a £1 a session I don't think that's too bad - now I just have to find the cash - maye the next payday at then end of this month..

J’s School are having Problems

2008-11-16T11:33:00.001-08:00

It has been apparent for some time that J is causing some difficulties for his school. There have been several incidents – some I was aware of and some I was not. For example I arrived early to collect J one day and watched J's class in the playground doing PE. J was there but seemed to be having difficulties in following the routine, several times he simply left the group and ran around the circular sheltered area and had to be pulled back into the group. I have also been aware that for some time J has been having some 1 – 1 time with a teaching assistant in the afternoons. I came to watch the school's Harvest Festival assembly which was lovely. The school filed in and I looked around for J but there was no sign of him – eventually he arrived – the last pupil brought into the hall and accompanied by the teaching assistant. J was sat with his class but on the end of the bench right by the door – the teaching assistant took up place next to him and another teaching assistant sat behind. J saw me and gave me a big wave – "look" I could almost hear him saying to the two Teaching Assistants "that's my Mummy". The class then sang a song and did actions – J continued to smile and wave at me – occasionally joining in with the singing but not doing any actions. The term "Asperger's Syndrome" wandered through my head and I wondered if anyone else could tell I was an over anxious mother!

However, overanxious mother may well have hit upon something, the parent/teacher consultation evening loomed and Mrs N who is J's lovely class teacher asked me a few days before this if I had "caught up with the SENCO (Special Educational Needs Co-Ordinator) yet". I hadn't but not for want of trying – the SENCO worked only one day in the school a week and was in other schools the rest of the time. Eventually I caught up with her at Gym Trail two days before the meeting with Mrs N. We had a quick chat and arranged a more thorough meeting for the day after the consultations with J's class teacher.

Mrs N was very positive about J but spoke of her difficulties in managing him within the classroom. His sensory problems are causing a lot of problems and on a few occasions he has simply run from the classroom. PE in the hall is also a problem as J spends a lot of time with his hands over his ears as its too noisy and the noise hurts his ears – the school have overcome this by allowing J to wear headphones for the session. At other times J will sit under the desk at the back of the classroom and cannot be coaxed out. For the past few weeks J has been having one to one support every afternoon – so virtually 10 hours a week. The school are funding this by releasing a teaching assistant from another classroom which means another class teacher has to manage alone. Mrs N says she cannot manage J without this. Mrs N mentioned Asperger's Syndrome but also said that J does not really fit the criteria in every way as he was very empathetic, however, she did say he appeared not to be able to pick up social cues and facial expressions – missing cues that would tell him people were angry. Mrs N mentioned getting a Statement of Special Educational Need for J.

Mrs F the school SENCO said the same the next day – she also mentioned Aspergers but also said that while many of J's behaviours and idiosyncrasies are "spectrum like" that many others were not. J has apparently been on the "School Action Plus" programmed since the beginning of Year 1 . Want to know what the difference is between "School Action" and "School Action Plus"? It's apparently 20 minutes! That's right – children on the School Action programme are entitled to an hour of one to one time a week. Those on School Action Plus get an hour and 20 minutes. This makes J's 10 hours a week a mockery, hence the need for a Statement.

New beginnings

2008-10-21T02:37:00.000-07:00

J's theme this term at school is "Beginnings" and he is looking at and discovering newness and new life. The school has posters of new babies, chicks hatching from eggs and is leading up to the Advent preparations and the birth of Jesus (being a Catholic school this is a rather big time of the year). This school has also been a new "beginning" for J as he settles into new surroundings, meets new friends and adjusts to life away from his old home.

J has also done some "Goodbyes" in the last week - to his old home, his old school and has remembered some old friends.

We went to our old home last week to begin packing up books, toys, clothes, CDs, DVDs and family history papers in preparation for the move into a new house.

Leaving my old home in March was a traumatic time for me and a difficult time for J. Personal matters had escalated out of all control and I could no longer stay there. Obviously J had to be with me and I literally collected him from his school and drove 170 miles away to my parents. J and I have been there ever since.

For me (and I think for J) the biggest and most difficult aspect of this was removing J from his lovely little school where he was happy and settled. The school was our local one and we had no hesitation in choosing where to send J after a visit in his pre-school year. Not only did the head master take time out to show us around but he also squatted down to J's eye level in order to listen to him and answer a question (the only school we visited where this happened). I was really impressed and from that moment there was no doubt about where J would go to school.

J started in September 2007 and settled in quickly - his SPD was accepted and there were regular meetings with the school who seemed on top of everything. They were kind, sensitive and supportive.

Unfortunately about the time J started school a problem ocurred in my personal life, a problem which devastated me and left me reeling. I limped on for a few months but quickly went downhill. With the benefit of hindsight I can now see that I coasted through those few months in despair, frustration and hopelessness.

By January all I wanted to do was move back to be nearer my family and I began applying for jobs. J's Dad was very upset and angry with me and we went through days of barely speaking.
I was angry, upset and anxious about everything but my main concern was J and his lovely little school. As a young child I went through several changes of school following the breakdown of my parent's marriage and it was hugely disruptive so just about the last thing I wanted in the world was for J to experience the same disruption. However, life for me could not continue in the way it had and I needed so much the support of my family around me.

In March matters came to a head and I collected J from school and drove to my parents. It was a horrendous journey during which I nearly turned back several times. I cried most of the way about J, his school and the change he was about to face but I could not see any other way around it.

I rang J's school the next day and spoke to the lovely head teacher. I cried on the phone as I explained that J would not be returning, he was kind and supportive, assuring me of the school's committment to handover all of J's information to the new school and also that J would adjust better than I was expecting.

Seven months on I can see he was right - J has adjusted remarkably well and has made lots of new friends. At the moment he is busy listing all those he wants to invite for a "sleepover" once we get to the new house. There are more than 8 names so far.......

Last week we went back to J's old home, it was familiar, old toys were remembered and collected but J no longer calls it home. As we left J cried and said "I don't want to go home" and then asked if he could drive past his old school. I agreed with very mixed feelings but felt we should say goodbye as J had not really had the opportunity to do so when we left.

We drove down the hill, over the level crossing and past the white house - all markers on the way to school previously. As we reached the school J craned his neck to see his old classroom - "look - that's my old classroom and there's the playground". I suggested we say "Bye Bye" and J did quite happily. I cried but he did not - very telling. Who was attached to the old school ? It certainly was not J anymore.

My feelings now?

J loves his new school and so do I BUT it does not compare with the school he left in my opinion. It's bigger, less organised and J's SPD does not get the same close attention as a result. The school welcomes parents in with open arms (as did the previous school) but the communication is not as good.

On the other hand J runs in happily and all over the place I hear the happy calls of his friends urging him to come and play. It's a time of new beginnings for us as well - new home, new car (oh yes - the old banger is being replaced with a shiny new lease car) and finally J's cat will be joining us. We are walking into a new future .......

Firsts

2008-10-09T00:08:00.000-07:00

It has been a week of "firsts" for J. He has his first wobbly tooth (oh boy does his Mummy feel proud and pleased). J is taking great pride in wobbling the tooth and is eagerly anticipating the tooth fairy.

J attends a local Catholic school - nothing to do with my desire for a Catholic education but more to do with my sister being a teaching assistant there (and therefore able to collect J from school for me) and also that all my nieces have attended the school happily. This week J returned from school proudly carrying a set of plastic Rosary beads. How he came to be in possession of these I could not glean from his explanations. Eventually I recalled reading in the newsletter that one of the teachers was holding a Rosary session at lunchtimes and Rosary beads could be bought for 25p. I duly paid up thinking that J had gone along and been given the beads. It turns out now that J was given the beads in assembly for some reason.

Last night he held the Rosary, put his hands together and said his prayers as he had been taught in school finishing with great flourish he announced ".... the Father, the Son and the Holy Goat"

He then proceeded to place the beads around his neck and said "I wear these as a necklace"
Not the effect I think his Catholic school would have been after.