DS1 (darling son no 1) has had a challenging week, and therefore so have I as I seem to measure my emotional temperature by those of my offspring.
If you met R on a good day you would probably be amazed at his diagnosis of Aspergers -“but he’s so friendly” “what a lovely young man” “you must be so proud” are phrases I hear quite often, and yes, these are all true. He is friendly and polite, and kind, and intelligent and thoughtful and a wonderful sibling to his brother and sisters.
However, he is and always will be autistic. And that is something that can sneak up and overwhelm him in a flash, with no warning, or with so little as to make no difference. What people who meet him (even those that think they know him well) don’t realise is that the reason he is so able to cope most of the time is the hard work that has gone on behind the scenes.
R goes to a very small private school 150 miles away from the family home. He leaves every Sunday afternoon at 4 pm and doesn’t return until Hubby picks him up from the central railway station at 5 pm the following Friday. I resent every second he is away, his siblings miss him, and he misses us. And yet it is the best and frankly only option for his education, as there is nothing suitable in the area. Not one school that has the right sensory environment for his often debilitating sensory issues. It isn’t a perfect fit but then what school is? His other great love and what R himself calls his “saving” is his love for all things Scouting. His Scout leaders are two of the most wonderful people I know, with a proven track record of working with, not against additional needs and a “can do” attitude that puts most SENCOs to shame. Their encouragement and support, along with ours, has enabled R to be chosen to represent his country at the next International World Scout Jamboree in Japan of all places – a challenge for most western youngsters, let alone one who struggles with everything from food to weather. And I have no doubt that R will cope, succeed and enjoy.
So, he’s doing all this and his life is going pretty well for a teenager with autism – he has a social life (of sorts) and he is doing well at school. So what does the council do when they are presented with such a glowing example of their spending? Yup, you guessed it, they try to stop him just as he is reaching his true academic and social potential, that’s what!
Our lovely social worker informed me that there was a massive cut in council spending coming and that even with no new schooling provision having been built or identified, we were being put in the unenviable position of having to justify R’s continued placement at his out of area school. Even though there is nowhere else we still have to do this. What a criminal waste of time and resources in a council already stretched to capacity and beyond.
So, social work and I have found time in our busy schedules to visit all the main secondary schools in the area and meet the staff, talk to them about their additional needs provision and tour the schools. There are five of them, and the nearest had already been excluded as that is where R lasted 4 days before having a breakdown back in 2009 in the first year. We skipped that one!
One was so unsuitable that we didn’t even bother with much of a tour – as soon as the deputy head informed us that they didn’t even have any space for a dedicated support base, let alone any small rooms where a pupil could have some quiet down time, we both agreed to strike it off the list. Two more were discounted for lack of resources or lack of ability to tailor the small classes that R would require for learning without succumbing to overwhelming sensory distress.
Which left one school, about twenty miles away. An OK commute if necessary. The deputy head teacher was welcoming and cheerful, and very positive. She also listened intently as we described the kind of set up that R would require. Unlike all the other schools, her attitude was one of “how can we achieve this for your son?” and I got the feeling that she would fight for the resources to enable his education. A tour of the school was punctuated with her pointing out possible pitfalls that could be an issue, for instance the patterning of the flooring in one area, the stairs being an open design (seriously is there anyone who thinks open stairs are cool?) and the incessant loud electrical humming from the server room.
I liked this woman, she knew her stuff. The social worker and I both agreed that it was still very unlikely R would cope here, both from the sensory and the social points of view, but nevertheless we both felt that he needed to see it if possible, just on the off chance that it might be a good fit, or at least do-able with support and maybe day release to college.
By good luck R’s school had an in-service day that Highland schools didn’t and so this Friday I took him to see the school. He looked absolutely awful; no sleep since the precious Sunday due to extreme anxiety will render even the most handsome sixteen year old to a zombie state, and he sat in the car park telling him that he hated both me and the social worker for arranging this. He was tense, and snappy and seriously uptight, and I felt like the worst parent ever.
Once inside and reeling from the double bell to signify the end of the lunch period we hastened to the deputy head’s room where she was again kind and welcoming, and didn’t take one iota of offence at the fact R had been struck dumb and didn’t rely or even look at her. We took the same tour of the school she had done previously, and R tagged behind, his entire 6’3″ frame poised in fight or flight mode. He wouldn’t go into any of the classrooms but peeked from the door, and he still didn’t speak. We managed about half the tour when he said in strangled tones ‘I’m done.’ He was on the balls of his feet and staring at the door. I handed him the car keys and he fled at top speed. Luckily I knew I could trust him to go straight to the car and wait for me.
I wrapped things up very quickly and the head said she was very impressed at how well R had coped – she could see how desperately unhappy he was from the second they met. I thanked her again for her time, and we left. R managed to spit out the following words and since then will not be drawn on the subject:
‘the lights, the crowds, too many people, low ceilings, claustrophobic, the heat, noises, kill myself’
I think that speaks for itself as to just how bad that was for him.
I have spoken to the social worker and she has had a meeting with the education psychologist. Thankfully, everyone is of the same opinion, namely that R should remain at his current school as a) it suits him so well and b) there is no viable alternative. A formal report recommending this will go to management. If anyone is foolish enough to throw out the recommendation they will speedily find a summons to a tribunal on their desk, but let us hope that common sense prevails.
But it still begs the question as to how the system can be so flawed that the only way to beat it is to place our most vulnerable in the firing line and watch them fall apart in order to prove the services they access are not only preferable but essential? How sick is that? It would be like taking a wheelchair away from someone with no control over their legs and asking them to climb a flight of stairs in order to prove they needed the chair.
My son doesn’t want to be different – he just is. And he needs that support to allow him to accept and embrace his difference, and to rock the world on his terms. And I will be there, helping him to help himself. For as long as it takes.