butterfly minds

Aspergers , education and us !

Posted on: July 27, 2013

Aspergers , education and us

today i have a guest post from a wonderful lady Jo on twitter who has allowed me to use a blog post of hers , shes @trinitytherapy

here is her story I received a letter from my 16 year old son’s college today containing his progress report. It was fantastic news! Distinctions in all aspects of his engineering course, comments such as “A is an active member of the group.” and, “He participates fully in class activities.”. I feel like a very proud Mum right now as any parent would, of course, but it feels all the more sweet knowing how he has struggled to get where he is today.

You see my son has Asperger’s, he was diagnosed at age 11 after what can only be described as a massive fight with the education system. He was always a bright child, soaring ahead in the SATs, way above his class level, he went to a good local school, one with a very good Ofsted report, but he hated it. He hated school. He hated the noise, the smell, the chaos, the playground games, the other children, it was one long 6 hour nightmare for him 5 days a week. We knew that he was quite a fussy child, things had to be ‘just so’, he preferred quiet play to raucous running around, he was sensitive, gentle, easily upset and emotional as a child. We didn’t know he had Asperger’s, all of these things we put down to just who he is and his personality. We made allowances that didn’t matter to us but meant the world to him, we never let different foods touch on the plate, never expected him to get dressed before breakfast, let him line up the teddy bears for 20 minutes before bed… And so on and so forth. All became part of his daily routine, and all served to keep him calm and relaxed as we also knew an upset A would lead to epic tantrums of the kind that we had never seen before and even our family seemed at a loss to understand and, I believe, thought we exaggerated at times. Unless you’d seen A have a meltdown (or any child with Autism) you’d never believe it.

We struggled, but we managed. He struggled, but he managed. He went to school and we talked to the teachers, we discussed difficulties with friends, we flagged up issues at school that made him anxious, and we suggested, on several occasions that something wasn’t quite right, only to be told that we were over anxious parents. He would come home from school and fall apart, he could never tell me why. We would be 30 minutes out of the school gates and he’d melt down… Totally gone. Kaboom. No warning, no lead up… Just BOOM! And there we were in the middle of a massive autistic meltdown with no knowledge of autism, meltdowns, triggers, calming, nothing… As you can imagine, we were lost and up a certain well known and unpleasant creek without so much as a boat never mind a paddle, and sinking fast.

We returned to the school for help, as coming home from school was the only common theme through all of the meltdowns. Poor A had the misfortune of having some particularly insensitive and quite frankly, old school teachers, real shouters too, the ones that humiliate the children as a form of control, that terrify them as a means to get work done… You know the type, the type we swore we’d never allow anywhere near our own children when we encountered them at school. Well, there was a little team of them in this school, self righteous, self inflated, self important teachers who had little regard for the children’s emotional well being. The SAT scores, of course, being the holy grail as it reflects how ‘good’ they are at their profession. Well, as I said, A did very well at SATs, he is a clever boy, has an amazing ability to retain information and a near photographic memory. And he was always very well behaved at school, albeit mostly out of utter terror of being singled out. But as far as they were concerned, absolutely no problem!

As time went on things got worse, his anxiety went through the roof and it was a struggle getting him to school every day, even the night before became a long drawn out process and as he wasn’t (and still isn’t) much of a sleeper, his stress relief was organising and reorganising teddy bears, sorting little toys from cereal boxes, getting in and out of bed because there was a noise, a funny smell, a scratchy label in his PJs, this could go on all night.

There were a few ridiculous incidents with teachers that should never have happened to any child and my visits up to the school were becoming more and more frequent, much to their annoyance. I even had the SENCo tell me, when I suggested Autism, that I clearly had no idea what Autism is and that I was being ‘silly’!

So, when he was 10 years old, I decided to homeschool. I took him and our daughter out of the school and took over their education for four years. It wasn’t easy, it wasn’t perfect, at times I wasn’t even very good at it myself, but it was better than school, and at the very least it was better than THAT school. We had lots of fun, we had lots of hard times. When my youngest son was born, A had his first proper and huge episode of OCD and was so terrified of germs that he washed his hands about 50 times a day, until the skin cracked and broken, he was anxious constantly. He once stopped eating for about 12 weeks, and I mean literally stopped eating, he had developed a phobia of choking and couldn’t swallow solid foods, he went down to a dangerously low weight very, very fast and terrified us. Since then he has self-harmed, smashed his bedroom to pieces on several occasions, had weeks and weeks of crippling panic attacks, he has been a teenager, a normal, stroppy, rude, belligerent teenager too!

He went back into school in year 9 (third year for us oldies) and had all of the support that he needed because of his diagnosis and a subsequent fight with the LEA to provide a statement and the funds for what his educational needs were. School for those last three years was a struggle too, but with hard work and perseverance from A and some amazing TAs and SENCo support we helped him through it and we helped him to gain the GCSEs necessary to get a place at college.

We have fought, he has fought, he has overcome some seriously big and difficult obstacles and he is now at college, with support there too, enjoying his course and doing very well, with a great group of friends and a part time job!

Simple stuff, but the stuff made of dreams when you are the parent of a child with Asperger’s or Autism.

To all of the parents I know that are still fighting, I am in awe of you and I know how it feels. But I know that it’s all worth it too and I hope that reading this gives you a little extra strength to get you through the tough times, our children are so worth it.

Tomorrow it’s his 17th birthday. 17 years since this wonderful, unique and remarkable human being was given to me to take care of. And though it has been a tough road, I can say with absolute honesty what an amazing privilege it has been. We are only part of the way through this journey, and there is more yet to come.

I love you A. Very, very well done and Happy Birthday!

Love Mum. x

thankyou for sharing this post !
jo’s blog can be found here
http://gaiamojo.wordpress.com/

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