Annual Review for Statement of SEN

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

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

On the other hand some things have not changed - least of all J’s rages which are prolonged and worrying when they occur. I can rationalise the lack of social communication skills but it’s still hard to manage and both J and I are usually exhausted after such incidents have occurred. In addition J is usually very distressed after any rage – he recognises he has lost control and it scares him. We continue to work on this with various resources and have identified the things which most set him off (frustration, fear, anxiety) and are beginning to work on things which might help.  Although I do not believe in second guessing any child I must admit to feeling some trepidation about his teenage years!

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

On the whole J is well behaved and when medication is used can be quiet and able to focus on an activity for 30mins or more. He has never been badly behaved in school   - to the extent that the teaching staff doubted he had ADHD (prior to diagnosis), however, with medication once he was diagnosed, his level of achievement increased beyond all expectations, he can now read – hesitantly and unsure but it’s a world away academically from where he was a year ago.

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

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

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

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

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

So – he rages.....and he is getting bigger.....and I am worried...and I am exhausted with the late nights, the lack of sleep and the difficulties in managing J as a single parent. This weekend his Dad is here and I am grateful but they have already clashed. M had said J could sleep in with him 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 I need 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?

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

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

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..

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

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?