So, now I know what they meant. All of those parents on the forums, support groups, pages and websites that I endlessly trawled through after George’s ASD diagnosis, I finally hear you.
‘Don’t give up fighting,’ they said, ‘You’ll have to fight for everything,’ they said. ‘It’s all a battle, but keep fighting until you get what you need.’…
I remember having a conversation about it to one of my closest friends Lizzie in her kitchen, baffled as to why other parents of children with Autism were using such negative words, fighting and battles connoted anger and pain. Were they being dramatic? I shook my head and blocked it out, and told Lizzie I just couldn’t understand it. I was a new Autism mom, and I was naive.
Think positive, be positive, stay positive.
I even wrote a post about accepting a diagnosis and remaining positive. The truth is I was, (and still am), in the early stages of my sons life. He was diagnosed at 2 and a half, and now he is 6. I hadn’t lived through it, yet. George was 3, he had his quirks but he passed as a typical child and went through nursery and preschool without a glitch. But today he has started an Autism specific school, and I realise that up until now, I’d been in denial.
I refused to acknowledge those parent’s comments and advice because I refused to allow our life to be like that. Who wants to spend their life in one long fight? So I ignored it, turned the other cheek and got along with life.
Last year, George started his school journey in Reception in the mainstream school across the road from our house, the same school his sister goes to, she’s 2 years above. We enjoyed those walks to school together, the three of us, in winter coats and scarves or polo shirts and sunhats. They had a year together in the same playground, and for that I am extremely grateful. It didn’t take long to see how different George was to the other kids. He withdrew from the classroom and wanted to be in the corridor where it was quiet. He liked the quieter area so much that he completed most of his work out there with his 1-1 TA. They supported him beautifully, he had his desk, his timetables and symbols to remind him what was now and what was coming next.
But I realised as I looked at his little work station in the corridor, separated from the classroom, that his inclusion in mainstream education was actually excluding him.
He wasn’t in class, completing his work next to his friends, talking about his ideas or trying to copy someone else’s. He was on his own, aside from his TA. But he seemed happy. We began the search for a more suitable school, one with smaller class sizes that he could be a part of, less commotion and distraction, and expertise on teaching children with ASD at a whole school level. Once we found that, he would do great! If only it were that easy…
We live in Sandwell, and soon realised that specialist provision specific to autism was non – existant. We visited schools for children of mixed disabilities, only to be told by the headteachers that they would not be able to stretch and challenge George and work on his strengths. He was exceeding his age related expectations for reading and technology, and in short was achieving at too high a level for any specialist schools in Sandwell to be able to meet his needs. We’d been given 15 days by the LA to put in a request for a more suitable school, and time was running out. I had to quit my PGCE (I couldn’t keep up with the workload while visiting schools and making decisions about my son’s future education) and became stressed and anxious that I wouldn’t find the right provision. Until I looked out of borough.
We found a perfect school, ASD specific, in Birmingham. It could meet all of his learning and sensory needs, and is closer to our home than any other specialist schools we had visited in Sandwell. But we were refused on the grounds of it being out of the Sandwell area. We’ve fought to get him a place, paid hundreds in private assessments and reports, and eventually we were given his place, just before a tribunal hearing was due. It was a long, exhausting and stressful battle for an education that he clearly needs. But now we have the school and he is part of a class with 9 other children 🙂 he is happy and relaxed.
LA provide transport for the children to arrive and come home by mini bus with all of their friends. But guess what? They’ve refused! Another day, another appeal. So that’s what they meant. To those parents I didn’t understand at the start of our Autism journey, I now know exactly what you meant.
Thank you for the advice. Keep on fighting. We have joined in! xxx