Tudor and Jousting fun plus a little bit of religion.

For those who know J's father, it is fairly obvious that J is the proverbial "chip off the old block". Like his Dad he has a love of performing to an audience and generally he is very good at this, although if a rigid structure like a play is going on, a change in the performance can be distressing.

As well as this,  J has achieved his ambition of being an Altar Server at church, it was with great trepidation that I agreed to let him try this as being autistic can make him fairly...random...at times. I took him on a Tuesday evening for the nice quiet evening Mass being led by the lovely (and maybe slightly eccentric) FrB .

J looked like a little angel in his white alb and just needed the halo and wings for the look to be complete. He went round the altar lighting candles to general oohs and aahs of the elderly ladies in the congregation and comments of "oh isn't he sweet". Given that J had been abominable earlier that evening my thoughts went along the lines of "if you pay me enough you can have him". All went well apart from at the beginning of Mass when he announced aloud to FrB (and the congregation in general) that he sounded "like the captain of a pirate ship"! Thankfully FrB took this in his stride and the rest of the service went without a hitch....J is very proud of himself.

So off he has gone with his Dad to be a "Tudor boy" while Dad remains Henry VIIIth and the jousters remain excellent at riding horses and slapstick comedy designed to keep an audence entertained.

J has had an absolutely fantastic time doing this and has enjoyed the friendship of V, the daughter of "Anne Boleyn". V is the smae age as J but they have agreed that she won't tell her boyfriend and J will not tell M (his "girlfriend") about their friendship. They are seen having a cuddle together when either is tired and it is all apparently very sweet.

This week J has an appointment with Judy, a dressmaker who J's Dad knows and who makes all his costumes, she is going to make a costume for J to wear when he goes off with his Dad - naturally with Dad being Henry VIIIth it is natural that J shoukd be Prince Edward VIIth although much less sickly.

I cannot wait to see him today and tomorrow he is once again an Altar Server.

With FrB being off "doing essential pastoral work on some remote islands " (ie holidaying in Fiji) we have the services of the hard working FrD - I hope he is ready for J.

Doctors, medication and fun.

So we went off to the paediatrician with J who treated her to the fun of himself in full flow. He lay on the couch, got off the couch, went under the couch, weighed himself, stood on the height scale and generally became distracted by all the bits in the room.

Discussed his situation with the doctor and she checked his blood pressure to find that it had indeed returned to normal  after a week without medication. Lots of discussion and thought after which we decided that as J's medication works so well he would be better off continuing on it but at a reduced dose. So we have reduced the drug doseage by one third and will monitor things, J will return in two weeks for a blood pressure check and hopefully will be not too inconvenienced by the reduction in the drug.

The lovely doctor also gave me some Melatonin to tackle J's sleep difficulties and we will see if this brings his "falling asleep" time forward from midnight to a more reasonable hour like 9pm!

So a few days in and J appears to be coping well with the reduced dose, he is still calm with it and can sit down to read a book, the food issues are unchanged but nothing new there and all in all I am hoping we have a good outcome to the medication issues. The proof of it will really be seen once J returns to school in September and has to face the daily noise and stresses of the classroom once more.

The issue with Facebook is not yet sorted but will be given full attention in September when school returns.

(Two) Face(d)Book

It has been a week of pure Hell!

On Tuesday I recieved a call from J's school, he had a headache and could they give him some Calpol? Yes they could of course.

Then I checked his blood pressure...I did it three times as is recommended and took the best of three which was 148/96 - so sky high. I rang my GP with a bit of a sinking heart because I knew the advice was going to be "stop the Mediknet", the drug which allows J to focus in school and which helps him deal with the sensory overload a normal classroom brings.

I stopped the Mediknet and the next day in school was a disaster, J simply could not cope. Even worse he had a part in the school concert which he had been so looking forward to. He managed half his part before all went wrong, the children accidentally missed a tiny section of the play out; not a huge thing by any stech of the imagination but it was disasterous for J whose autism does not allow for changes easily. So J became confused and bewildered, he went onto the stage when he should not have been there, nothing too wrong in that as he simply took part in the singing and then left the stage when he realised he should not be there. He went to his 1-1 and I could see he was becoming upset and starting to cry, his lovely 1-1 (Sally) tried to help him but he would not be consoled and so his class teacher took him out and the child who did the part at the previous concert took over.

By 1.40pm the school were on the phone, could I please come and collect J as he was at risk of injuring himself (and others). I went and collected J who was in the medical room when I got there and active as anything, when he saw me he became emotional and started to cry, he sat on my lap and cuddled into me with great heaving sobs and kept repeating "I'm sorry, I'm sorry, I'm sorry". It was hideous.

The next day we had a meeting with the headteacher, J's Dad drove up from Somerset to be there too.
We decided along with the headteacher and with the SENCO that J was unlikely to get anything out of attending school for the final two days and so he spent those two days with me as "authorised absence". Naturally in the calmer and quieter environment of home he was easier to deal with...and we had the Lego out, he bounced on the trampoline and we read.

By Friday I had managed to speak to the paediatrician and an appointment was arranged for 25th July and I heaved a sigh of relief. The tension I had felt for the previous few days began to ease although I still felt an awful tightness about my chest but it was better now I knew an appointment was in place.

Then the phone rang......

A parent who I know rang me in my capacity as Governor, she didn't kno what to do but there had been a lot of complaining on Facebook regarding the school's reward scheme and halfway down the responses was a parent stating that "I bet that little shit who ruined the Yr 4 concert got a reward, he was on stage when he should not have been and ruined the hard work of all the other children".
Initially I put this down to the ramblings of someone who did not know J's diagnosis....until the name was passed on. I was stunned, this parent has a child with a disability herself and is very nice to my face outside the schoolgates and even worse she knows very well the diagnosis J has.
J's Dad was fuming and sent her a message via Facebook pointing out that J was autistic and telling her that referring to him (or any child) as "a little shit" was hideous. Her response was interesting...

She was not apologising
J spoiled the hard work of all the other children
J misbehaved and got away with it
She "knows" about special needs as she has a child with special needs herself (so that qualifies her obviously to make ignorant comments).
The school should not have let J take part if he was distressed
The school were at fault.

So I am uptight all over again...but I am not letting this get to me as I have the whole summer to get through yet. I have copies of her messages (and all the others complaining about the school) and they will be going to the headteacher as soon as I get back.

But it's interesting.......she is so  nice to my face....but evidently not behind my back and now I am wondering how many others are the same.

Truth hurts!

There are occasions where I wonder about the diagnosis J received because his vocabulary is so good, he can mask a great deal simply because at times he can talk the talk and give a good impression of having understood and processed things when in fact he has not.
There are other occasions when I know that the diagnosis of autism was quite correct and J tells me in no uncertain terms either verbally or in other ways. His non-verbal ways include retreating under a table, hands over ears while he hisses loudly at all comers!
Sometimes like all those on the spectrum he is unfailingly truthful with no thought about how his words or actions affect others - or maybe he HAS considered how his actions affect someone and does it anyway.

So J does NOT like being teased or laughed at or called names, it upsets and distresses him but it also makes him very angry. His anger has led to several incidents in school which have often involved him bolting from the classroom or retreating under a desk to hiss at anyone who comes near.
Just lately though his talk while upset about things is of physical violence and he wants to hit or punch someone or other for their wrongs against him. We have talked about this in depth and J knows that hitting others is both wrong and not very nice. However, as I explained to the nice CAMHS (Child & Adolescent Mental Health Service) who visited to carry out an assessment, it IS just talk and so far he has not hit anyone. Little did I know that as we were talking, the school were sorting out yet another issue of teasing which had culminated in J thumping the boy who had upset him. The school had handled this very well (as is usual with them) and J had eventually apologised to the other child who had graciously apologised for teasing him and accepted J's apology. All was well.

So that evening I discuassed the incident with J who explained that the other boy who is in the year above him had called him "stupid". This had upset J very much and so ..."I hit him".

I asked J how he had felt after hitting the other child expecting to hear "I was sorry" but instead got "I felt pleased because it hurt him and I wanted it to really hurt".

Okaaayyyyyy! So we discussed it further while J raged about being teased and told me about all the other children he planned to hit too! Then eventually he calmed down and told me "but then after a while I felt sad about hurting him and I said sorry and he said sorry too and we are both alright".

So this child teased J, he processed it but could not follow the usual rules about finding an adult (or maybe DID think about that and chose to ignore that advice) and the other child was thumped. J was utterly truthful about his intentions to hurt and that worries me a great deal, he is getting bigger all the time and much stronger. He is also maturing though and with that maturity might come more self control.

I am hoping......

Team Around the Child meeting

We recently had a Team Around the Child (TAC) meeting regarding J in school. This involves several people involved with J sitting round a table to look at his progress and to discuss what other input might help him with specific issues.

 Firstly we had an update from the school, J is making progress and achieving well although his "achieving well" is not that of a standard child but finally after all this time he is moving from "below average" to "average". Certain situations and frustration still have him fleeing the classroom or retreating under a desk with his hands over his ears and hissing at anyone who comes near but on the whole this has all improved. My quirky little boy is growing up and starting cope with some things he could not previously manage. His LSA (Learning Support Assistant), Sally reported that J was making progress in leaps and bounds with reading and that he had finally accepted he would not be playing the lead role in the class play (this acceptance took weeks and weeks of talking and discussion). He is playing the allocated part with gusto and enjoying it.

The local health visitor for children with learning difficulties told me of a local group named SHARE which ran after school activites for children with special needs. I have the number and will give them a ring.

The local CAMHS were conspicuous by their absence and had sent a letter saying J's challenges could all be met within "Tier 2 services" , ie not urgent. I now have a letter and an appointment for an assessment which will see J join yet another very very long waiting list. Similar to the sensory occupational therapy one on which he has now been waiting for two years.

The specialist teacher (Ros) reported good success with a social communication group involving Lego. J has to explain a brick type to one child who has to pass the correct brick to a second child (the buildre) and then explain how to build a Lego design brick by brick. J is not allowed to touch the bricks and has to explain using only verbal communication. The "not touching the bricks" bit took some discussion and acceptance but Ros reported that J did well with guidance and that she was looking forward to working on all this with him again.

And at home, J remains challenging at times and now adding in that he can "look after myself,", this from the child who can still not put on his own socks with ease. This accusation comes from being forbidden to play with certain children outside (we live in a quiet cul de sac) who ask J out to play simply because they can tease him or get him to do things they know are not allowed. J thinks they are his "friends" and it is taking a great deal of discussion to try and get across that friends do not ask you to do unwise things.....like smash a glass bottle they have handed to you. Nor do they say "if you don't do that we won't be your friends..". It's a steep learning curve for J and he remains isolated at times which is hard to see.

Open letter

To the family and friends of J's Dad,

I have a feeling that this will be a very cathartic post to write.

Two days ago a friend who shall remain nameless sent me a “screengrab” of a Facebook status left by J's Dad following an email I sent to him.

The email was sent following huge frustration when yet again J's Dad had no money to give us, he agreed when we separated to pay me £200 a month for J – and to be fair he has done this most months bar one in August 2010. The money is usually paid as and when J's Dad has it and recently in amounts of £50 here or there – not easy then to plan financially.

I sent an email to J's Dad moaning about this and also made a couple of suggestions regarding how he could make more of his time here with J. I pointed out that I knew he loved J very much and that having proper 1-1 time together would be beneficial for them both. J's Dad took this as a criticism of his parenting (and to be fair I was critical) and interpreted it as “I have just been told I am a crap father” - a thought he then posted to his Facebook page for you all to see.

The responses are “interesting” to say the least.

To my sister in law who deemed me “the benefits queen”, I would like to point out that since 1982 I have worked non-stop and paid tax. My only period out of work has been since March this year while I help J (your nephew remember) through some difficulties he is having which were impacting upon me in my job. It is interesting that this is your response though – I wonder what conversations have taken place about me for this to be your opinion. I could tell you the REAL reason I left....but I won't because I respect your brother's feelings (and my J's feelings and future) far too much to do so.

To the person who said “serves you right for marrying a girl from Basildon”, remember that “the girl from Basildon” supported J's Dad as he started his business and worked to pay the rent and as many bills as possible while it got off the ground. All done while effectively being a single parent as J's Dad was away so much and also dealing with the initial concerns about J when it became apparent he was not developing in the same way as other children of his age.

To the person who advised J's dad to “see a solicitor asap mate” - fat chance of that happening as it would cost money he does not have, instead he has suggested that I see a solicitor – being “the benefits queen” means I get Legal Aid after all. I have an appointment for September – being on Legal Aid means the services are few and far between.

I know J's dad deleted the status update because he was asked to by my Mum – not before he had clicked “like” to all responses though – interesting that he “liked” the “benefits queen” one but there you go. He says he barely read them – yeah right! I also know now that many members of my family (beyond my Mum) saw the status and the responses and naturally they piled in to the bun fight that followed, more because they knew I would not see it and had no way of defending myself against some of the comments posted.

As always while working in this area today, J's Dad is staying with “the girl from Basildon” who continues to support the business in saving hotel costs up here – a little appreciation of that fact would not go amiss.

Cheers!

Tears and meltdowns

So this afternoon J had a meltdown of epic proportions. I win't go into details about the cause except to say that as always it involved being teased (or even perceived teasing) by another child during play outside in the street.

I knew as soon as J hammered on the door that something was wrong, as I approached the door to open it he began kicking it while screaming in frustration and anger. I opened the door to a sobbing, raging child with the other children looking on in confusion.

Indoors came J still screaming and raging, a dining chair was kicked to the floor and J began kicking the coffee table in rage. I attempted to hold him but ended up letting go as he was screaming "get off me". He was drenched as they had all been having a water fight outside and he was pulling at his clothes and hitting himself.

In between rages and screams I got the cause of the upset (another child had thrown a water balloon at J which had hit him in the side and hurt. This was followed by rages about a boy in school who prior to the half term had screamed in J's ear either to upset him or due to sheer over-excitement - J does not know which but suffice to say he "is not going to school tomorrow Mum".

Can't wait for morning and for battle to commence!

So my plan tomorrow is a meeting with school to sort this out as J does not want to discuss it but clearly needs to if things are to be addressed.

The Green and Sad Eyed Monster

I sometimes wonder what I could have achieved if J did not have autism, if he had been neuro-typical and I had been able to work full-time. It makes me feel sad........

Yesterday a friend and former work colleague achieved something wonderful – she is now a Clinical Practice Teacher and will be training Health Visiting students in the community. I am so pleased for her because I know how hard she has worked to get this qualification. It hasn't been easy for her, like me she is a single parent and she has gained this qualification while juggling parenthood and work. In short she has worked hard for this qualification and so richly deserves it.

I would be lying though if I didn't feel some envy, if I didn't think about what I might have been able to achieve if I had been working full time, if J had not been autistic.

I had no issues while working full-time, there was always space to arrange work, always space to find time to concentrate on paperwork and time for everything despite the huge caseloads. However, this full time work was being achieved at the expense of J who was struggling so much in school and at home. I felt I was not giving him the support he needed from me and decided the best way of supporting him was to reduce my hours. As soon as I went part-time everything became a nightmare which is ironic as it was supposed to make life easier. In hindsight it is easy to see that while my hours reduced, my mindset was still in “full-timer” mode and I had much too high a case load for my hours. This was partly my own fault as I just accepted what came my way but I should have been more aware, should have been able to say “enough”, but I did not.

In health visiting it is vital to have your eye on the ball all the time – I lost sight of the ball as J became more challenging and night times became worse. I was constantly exhausted and stressed about things. I worried all the time about work and was anxious about the possibility of forgetting things. I started to really struggle and eventually this became obvious to all around me, I began to question my judgement and went off sick which began 14 months of being in and out of work. I couldn't cope and self-confidence in my ability to do the job took a massive nose-dive.

The final straw for me was in having not completed two new birth records. It was not the fact I had not completed them but the fact that I had no idea I had not completed them. For me that was the wake up call I needed, I had worked too hard for these qualifications to lose them, I did not want any team to “carry” me and I knew it was time to make a decision about my future. I completed the forgotten notes before lunchtime, then went home at the end of the working day and never went back.

I discussed it all in depth with my lovely GP who was fantastic and warned me not to make any rapid decisions. I continued to see my GP fortnightly for support and discussion, she was super, never rushed me and understood my fears about being in a team and being deemed “not reliable” and also how I did not want to be the one “who is always off sick”. Eventually I made the decision to resign and discussed this with my manager and the human resources department. My manager expressed the hope that I would go in and do some Bank work which I agreed to but to be honest my confidence in myself is shot to pieces and I still doubt my ability to do the job.

Since leaving, my exhaustion is lessened, possibly because I am no longer trying to juggle my anxieties about work with all the anxieties of home. People are commenting on how much better I look and I know I feel better. Some exhaustion continues, I have been diagnosed with Obstructive Sleep Apnoea and now use a CPAP machine at night – with varying success, my nights are still very disturbed by J who is very wakeful at night so I remain tired although less so than I did.

So I am proud of my friend for what she has achieved, and the fact that she has achieved it during a time of great personal stress in her own life. She is a different person to me though and has managed the balancing act that I could not. I just have to accept that my life is not the same and I am not going the same way, at the moment I don't know if I will ever go back which is sad. My whole working life has been in the NHS and I honestly don't know what I will do in the future -it all remains to be seen.

Temper and meltdowns

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.

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.

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.