Now here's the thing. My son wasn't diagnosed until he was 15. That doesn't mean he wasn't autistic until he was 15, it just meant that between medical mess ups, a badly timed house move, and a neglectful school SENCO, he slipped through the net until he took his mock GCSEs. Their net, that is! He's always been well and truly cuddled in my safety net.
Let's rewind....
A was my firstborn. I was a singer/songwriter and just before I decided to start having babies I took the decision to walk away from music. I'd never been your run of the mill human. I didn't have a 'real' job. I didn't hold down relationships very well. I didn't own anything much- certainly not a house or anything grown up like that. I met A's Dad when I was 28. I was still existing like a 17-year-old - I was young in my head! We had an opportunity to move away to start a new life. I was 30 weeks pregnant but thought, hey, why not!!! But by the time A was 12 weeks old, our dream life had fallen around our feet and we were jobless and penniless, and far from home!!! We did some serious heart searching and decided we might as well just keep going. I had family fairly near and had an amazing picture in my head of green fields and growing my own veg and animals running in the garden. You're beginning to see what a dreamer I am aren't you...
A didn't sleep. And he never stopped feeding or crying. He was my first so I thought 'wow, babies are hard work'!!! I cried sometimes too- but I got on with it, and carried on with my plan to make sure he had a brother or sister nearby in age. By the time A was 6 months he really settled down. He still had to eat a lot, I mean a lot a lot. But he began sleeping and some days I'd think he was asleep and he'd just be sitting silently in the cot.
He was a funny little thing. Didn't crawl, but just sat there like a little pudding wanting more porridge. He wouldn't sit on the grass, it made him cry, so I'd sit him on a blanket in the garden and he'd pull his toys towards him by tugging on the rug. But never venture off the rug- contained by his own fears! By now I was pregnant again so grateful that he was more settled, but desperate for him to get walking so I didn't have to lug him around with my ever increasing belly.
B was born when A was 15 months old. A still wasn't walking, and any attempt he made ended in serious head injuries and terrifying falls. There was NO WAY he could work out stairs!!! Our little cottage had 2 steps on the landing. I lost count of the amount of times he fell down, or up them. Ice packs and ice pops were never far away.
As B grew and started crossing milestones I became aware of how tricky A could be sometimes. Still terrifying on his feet, he'd climb to the top of plastic slides at toddler groups then randomly step off the side. The mothers there thought I was neurotic I'm sure. Standing nearby ready to soften his fall. But I couldn't stand by and watch him headbutt another concrete floor, or split his lip again.
As his walking improved his toe walking didn't. He tiptoed around like a little chubby ballerina and tripped continuously. I asked the health visitor who told me to see the GP. The GP referred us to the hospital and the hospital finally said he had 'tight calves' they were discussing operating on him - cutting his Achilles' tendons to help his rather stiff legs to work better. Then just before D-day, the doctor asked, 'have you heard of dyspraxia'?! I researched it and it certainly sounded like it could be A. We were sent away, with a referral to the OT.
A began nursery. He cried and cried and screamed and cried. I honest to god think he cried, screamed, or vomited (oh yes, this was another of A's party tricks. I'll tell you more in a bit) until year 5!!!!! They'd peel him off me leaving great huge gauges in my neck, then every day when I'd go and pick him up he'd throw his bag at me, punch me, and throw himself on the floor crying. Playground mums would try hard not to make eye contact but I could feel their judgements burning through the back of my head, their stares practically parting my messy pink hair from behind.
He began being invited to birthday parties, not everyone would invite him, less and less as the years passed, but at first, there were quite a few. We'd turn up to a noisy, brightly coloured soft play somewhere on the border, and I'd brace myself. Sometimes it was only 3 steps inside the door when A would announce 'I don't like that smell' and would throw up on the jigsaw carpet. Other times he'd time it just so I'd be in mid conversation with a rather well dressed, very made up Stepford mummy when the heaving began. I tried to run to the toilets or outside or at least to a washable floor surface. I didn't often manage it. And slowly, bit by bit, parties became impossible things.
So did the idea of going for a meal. Or going somewhere new. Or visiting family in the south. Or cooking certain foods at home. There were too many smells he didn't like and too much puke to clear up in public places. I was beginning to baton down the hatches.
And me, being a rather inept socialite myself (almost waiting for the diagnosis police to come knocking on my door one day and demanding my credentials!), I just felt I was a pretty rubbish Mum and clearly I was doing something wrong. I hadn't taught him how to be in social situations- he'd somehow seen my fight against the great wide world and got a whiff of my own 'fear puking' in the past, so no wonder he was struggling.
As B grew and hit more and more milestones it was like a great big magnifying glass being held over A. B was pretty easy to potty train, A still couldn't master it. B stopped wetting the bed, A didn't for many years to come. And let's not talk about bowel habits. In fact, we can't talk about them, because A still doesn't have the emotional language to verbalise any of that.
Don't get me wrong though- A's autism didn't affect his speech really. He didn't babble much, but suddenly came up with 'oh mummy look at the amazing Audi' and could soon name every make and model of car. He was only 2 or 3!!! He's always had one of those memories too- like he can name every player in every football team and tell you the number on their shirt and all that. He'd freak me out when he was 9 or 10 with the names he could even pronounce! He has great language skills, but not great understanding ones. He can categorically state now, 'I don't understand sarcasm, but you're being sarcastic, right?!'
And that there is the single most amazing thing that has happened very very recently. He began being able to verbalise, not all, but enough tiny snippets of what's going on in his head that I finally feel like I understand enough to be able to help. Just a bit. Even if it's just reassurance.
So- tripping backwards again...
A was bullied at school. A lot. But sometimes he couldn't verbalise it and I'm not exaggerating when I tell you it has been TWO YEARS LATER that A has explained why something happened or about a particular child that hurt him or something. CAHMs became involved when A's school fear (a combination of fear puking every time we left the house, being bullied pretty persistently, and the smell of the school hall). I was unable to force him to school - not while he was being sick. So he didn't go. Actually for several months. CAHMs would come and chat with us, we had a lovely lady who spent many hours chatting with A and drying my tears. She also asked my permission to refer him to the autistic team. Eventually, we got him back to school. Shortly after that, the school phoned in a panic. The boy they categorically said was not bullying my son had snapped and smashed A's face into the concrete repeatedly. This was year 5, and the same boy that had been hurting him since reception. Shortly after this, school became a little easier for him.
OT had sent him for trampolining lessons to strengthen his core and sent him a special chair to sit on and a big fat knife and fork to help his fine motor skills. I never saw the diagnosis in print and wonder to this day if it was an actual diagnosis or just a quiet fobbing off. But after waiting on the autism waiting list for 3 years and counting, CAHMs suggested we got for an ADHD diagnosis as this would get A 'the same kind of help' as the autistic team would offer. I went ahead, and my 3 toed sloth of a boy was diagnosed with ADHD!!! I laughed and said for god's sake don't get them to look at B! Now HE was a big fidget 
At this point, we put our house on the market as I just wanted to come home. I missed my family and felt trapped by the misunderstanding of my son and what I felt was the judgements of people around me. I never settled into the area, even though I did make some lovely friends, I just couldn't shake off the homesick feeling. I also felt that in familiar surroundings I might be braver with B and help him to move forwards more. It took a year for the house to sell, and that left us at 4 years on the autism waiting list for 4 years with no response.
We arrived back *home* in the summer before A began at high school. I was lucky to get him a place at the local school, but the others were sent further afield. I told them he had dyspraxia and ADHD and was on the autism waiting list. They said they'd send off for all the relevant information from his old school.
A coped incredibly well- this was a massive change- but I think in some sense he was grateful to be away from the people that had made his life so difficult. The football team he wasn't cool enough to click in with. The school where his bullying was ignored until he was hospitalised.
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