This is my child. He is 9. He loves reading books - especially books like Horrid Henry, Dirtie Bertie, Roald Dahl stories and books with anything gross or yuk in them. He adores Moshi Monsters like many other kids his age. He loves playing outdoors in the garden, in the woods, at the park. He really likes going swimming, goes to karate lessons and Boys Brigade.
Just a normal 9 year old boy, right?
Well yes you are right, he is a normal 9 year old boy but he also happens to have Aspergers. We try to think of it that way round in the hope that others will too.
Although his 'condition', 'disability', 'special need' or whatever term you chose to call it does affect pretty much every area of his life and ours, we have deliberately tried not to see it in a negative way.
We occasionally have days that are so difficult that I do end up blogging about them, but more often I find support reading other peoples blogs, and so we have really ended up leaving out much of J's story from our blog.
With Mumsnet's 'This Is My Child' campaign, we thought we would attempt to tell a little of J's story. He went through enough in the first 6 years of his life pre-diagnosis, after diagnosis and with the ordeal he endured in the education system to fill an entire book and to cover things fully would also bring up a lot of past hurts. J is involved in this blog a lot with his jokes section, helping out with reviews and book write-ups so I am conscious that I don't want to write with the level of detail that would bring back bad memories for him. Even at the mention of his former school, he can then have nightmares for several nights!
Somehow, I don't think we will quite manage to do this 'in a nutshell' so be prepared, this may become one of our longest posts...
I guess looking back we always knew J was 'different'. He gave up his naps as a baby and always struggled to fall asleep. We used to call him a little Houdini as he was able to climb and escape from any kind of strap / harness from the age of 9 months. He would think of doing things that other babies and toddlers would not even consider doing - always pushing the boundaries and he would not take 'no' for an answer.
We have noticed similarities between T and how J was as a baby. At this stage it is hard to tell, but I guess we just want to be more aware this time round.
At age 3 he would quickly and confidently be able to do mental addition whilst most his peers were just learning the basics of counting. We hadn't ever 'taught' him this - he just knew the answers! Still nothing was spotted at pre-school. He actually attended a very good pre-school who would tailor things to his needs and interests and always kept him busy and I think it was because they were actually meeting his needs so well that nothing unusual was noticed.
At home he was always 'harder work' than his younger brother, but that was just him. We got to know how to motivate him and encourage him and how to minimise any problem behaviour. It was essentially doing all the recommended things relating to positive praise and ignoring unwanted behaviours as much as possible.
It was only when he started school that within a matter of weeks we started to get communications from school telling us that he couldn't sit still, he didn't listen well, and that his behaviour was not as they would expect.
Their suggestion? That WE attend a parenting course! They were the ones having problems with his behaviour, and yet we were the ones that should attend a parenting course! We agreed - of course we wanted to give our son the best possible chance of doing well at school and we were very willing to do everything the school suggested.
We raised the possibility of additional needs on several occasions because we wanted them to consider whether J might be getting bored at school with his incredible academic ability (by now he had started to teach himself times tables at age 4), or whether there could be another reason. We knew little about Autism / Aspergers at that point but had heard of ADHD and his inability to sit still seemed to tie in with that.
Yet again school said it was just 'immaturity' and that he would 'grow out of it'. When they tried to assess his mathematical ability, they said he barely knew his number bonds to 10. This was totally inconsistent with his ability we had seen at home, yet I just don't think they believed us.
Eventually it was only because of a friend of mine (who was a school nurse at another school) suggested getting J's hearing checked that we self-referred to the school nurse. J did have hearing problems which had not been considered at all by the school as a possible cause for his 'not listening'. Within a few minutes of explaining J's history and behaviour patterns, the school nurse knew that there was most probably a 'medical' (i.e. not parenting and not behavioural) reason for J's difficulties at school.
She went on to refer us to the paediatric doctor, who then referred to the consultant. At this point we were looking at a wait of well over 6 months (having already waited for well over a year to reach this stage since J started school), and so made the decision to take him to see the consultant privately. Whatever you're views may be of 'queue jumping' and being able to afford to take him privately, when you see your child coming home from school upset day after day, constantly being punished at school, wetting themselves at school (when they had been potty trained for years before that point), and then being told it was our fault by the teachers who we looked to for support and guidance - we needed to find some sort of answer and fast!
Even with a private diagnosis, it had taken over a year and a half to get to this point, mainly because of the schools incorrect advice of telling us to 'wait and see' and 'he'll grow out of it'.
But finally we had a diagnosis! Surely the battle was over! We had a reason for why our son was struggling so much at school, why he was misunderstood so much, why he was always in trouble, why he was the one who was always scapegoated regardless of whether he had done it or not, we finally knew why our son was 'different'.
Friends phoned to tell us how sorry they were for his diagnosis - but we were relieved. Relief that it wasn't anything we had done wrong. Relief that is wasn't our fault. Relief that finally we had an answer.
Now he would be understood at school and his needs would be met and he could finally get on with his education instead of spending the whole day being told off and in trouble.
I had worked in childcare. I had read about all the legislation. I knew that schools had SEN policies and procedures to make sure that every child's needs were met. I knew that there were support networks out there to help. Now that we finally had a diagnosis, all of these things could be put in place and all would be ok.
This is where we discovered the rhetoric does NOT match the reality.
This is where we discovered that the battle to get a diagnosis was hardly a battle at all. It was a mere tiny skirmish and the battle had just begun.
We soon discovered that the legislation counts for nothing unless you have the time and hugely extensive resources to fight it all the way through the courts.
We soon discovered that no-one has your child's interests at heart as much as you do.
We soon discovered that the education system's agenda is driven by the school's own targets, and budgets and needs.
We soon discovered that although there are various support networks out there, often no-one can help point you in the right direction to find the one you need.
We soon discovered that the organisations and departments that are there to give advice and ensure that the schools do all that they are supposed to, actually have no teeth and cannot make the school do what they are legally required to do.
We soon discovered that the schools mantra of 'working in partnership with parents' actually meant "you parents need to get in line and do what we say and we don't care how much you think you know about your child, we are the school and we know best".
We soon discovered that we should have stuck to our own gut instincts and parenting methods because the school's advice on 'punishing and disciplining' our child meant that things just got worse and worse.
We soon discovered that people were quick to judge and come to the assumption that we were 'the type of parents that were never satisfied however much the school (supposedly) did to help'.
We soon discovered that although there is an illusion that schools are accountable to governing bodies and local education authorities that actually when it comes to the crunch, those bodies have very little power over them (especially when the governing body is heavily made up of teachers and parents who have a vested interest in the school).
We soon discovered that schools are permitted to tippex out school incident reports a year after the incident concerned and are able to make up lies about children and parents as they so wish without being held to account. (We did eventually get an apology for the lies told about us but only after a ruling by the ombudsman telling them to).
Yes all of this is shocking. It was shocking to us. But what was more shocking is that there was no-one to hear our voice whilst all this was going on and no-one within the school system to actually act in our son's best interests.
Is it any wonder that we now homeschool!
Homeschooling has offered us so many advantages as a family. There is no way baby T would be with us today if J was still at school as life was far too stressful to even consider having another baby. There have been huge advantages for both boys as D learnt to read within a few weeks of leaving school and became a confident reader after another few weeks (something that would probably have taken at least a year to achieve at school). J has come on leaps and bounds academically. He regularly appears in the newspaper with news of his achievements and we have gradually built up his confidence and self-worth that had been so detrimentally affected during his time at school.
Yes I sometimes feel we have had a bad day, but I only have to remind myself that at school, every day was a bad day!
And yes I do sometimes feel it is unfair that we have had to homeschool because there is no provision available for J (despite him now having a statement of special educational needs - that was yet another battle and a whole other story- the local education authority still provide NOTHING for his education).
There are whole other areas that deserve blog posts of their own like what day to day life is like with J, lots more about home-schooling, what it's like having a 'hidden' disability, sleep issues and all that surrounds that but I think this has given a snapshot into what was probably the biggest let down for us in having a child with special needs - that those who we thought would be the most caring, understanding and trustworthy - i.e. the education system - turned out to be the ones with the least knowledge, understanding and integrity.
I do feel the need to mention that we have come across some wonderful teachers who actually were 'on side' with J but it is the overall culture and ethos of the whole system that led to us having the experiences that we had.
We wanted to do something ourselves to raise awareness of what is happening in schools and how many children with ASD and similar conditions are being failed by the system - but we ended up so drained and tired with the battles we had to face that we were left with no time or energy to do the things we hoped to do. I hope this is, in our own little way, adding our voice to the many others out there saying This Is My Child.