Catching Up Part One: The Boy

It is now September 2015. The “baby” is now a toddler, a 15 month old walking, signing, dancing, saying a few words and a few more ‘nearly’ words, toddler. She’s a little bobby dazzler as my granddad would no doubt say. Sam is about to turn 5 and has just started school. He’s now an inquisitive, imaginative, cheeky and loving little boy. And soooo tall! He’s the best little boy in the whole world. No kidding.

I haven’t written in a while, but I’ve made the decision to make this blog private and make it my online diary, then gone are the questions of how much of my families private lives I want to share, what I want to share of myself. I need to write, it’s my therapy. But the lives of my children are their own and they have a right to privacy. So decision made.

So where are we at now? Let’s start with Sam: he’s started school a few weeks ago, just mornings so far - the teachers are keen to help him settle in slowly and gently, causing as few upsets as possible – for which I am immensely grateful. When he started nursery every time he came home he would meltdown, stripping off his clothes, screaming uncontrollably, inconsolably. He’d also do the same when he woke in the middle of the night. I didn’t understand anything about autism at the time, but it did set off alarm bells that something was amiss. He’s now on week 3 at school, and although I’m braced for meltdowns (they happened again when Martha was born, so they tend to go hand in hand with big life changes) so far we’ve only had one in the middle of the night, and it was nowhere near the magnitude of the nursery ones.

So far so good. Last week when I picked him up his teacher told me they’re amazed by him (following on from his nursery report which called him a superstar, saying how proud the teachers were of how far he’s come). The nursery had loaned the school one of his previous teachers to help him settle in, but by the end of week one he didn’t need her anymore, he’d made the transition much more quickly than they had planned for. They were also impressed by how much he loves pretend play (unusual in their experience of ASC) and by how chatty he was with them … He has exceeded their expectations. They’re now working on introducing him to the dining room in preparation in him staying for lunch, that will be the biggest obstacle in my opinion, then slowly we’ll build up to the full day… It’s going well, there’ll inevitably be bumps in the road but we’re working on easing him in gradually.

 

As much as he’s amazed his teachers, Sam amazes me too. When he got the diagnosis last year I was so afraid of the future – I knew very little of autism and I didn’t know what it meant for him; would he end up in an institution? Would he be like a child for the rest of his life, dependent on me for everything, would he turn violent? Would his life be one of misery? No friends, no love… What would happen to him when I died? I was so scared for him, and so scared I wasn’t strong enough to be the mum he needed and deserved, I honestly wanted to jump under a bus. But obviously that’s out of the question with two young children. And I know now my image of what autism is didn’t match reality, I was ignorant.

Now after reading many, many books, talking to experts, attending workshops and conferences, talking to other mums with ASD kids… (recognising I’m on the spectrum too and most of my family and many of my friends are more neuro-diverse than neuro-typical)…All that I thought autism was has pretty much gone out of the window and far from being something new to me, I know I’ve been living with it all my life.

In the last 12 months my world has been turned upside down.

So now, well I worry a lot less about his future. You see I know his autism doesn’t mean he’ll never do something. It just means he does it in his own time. It might not be when other kids his age do and at times that may inconvenience society and school systems as a whole because they prefer everyone to be predictably the same (yawn!), but I don’t care about those things. With patient persistence and gentle encouragement, understanding of his current hurdles, well there is nothing this boy cannot do and cannot be.

Yes we have our challenges; right now he steadfastly refuses to go on single decker buses, I’d love to take him on trains but he’ll not set foot on one, our phone has been switched off for months and he often won’t go in a room once he spots a telephone. I want to listen to lots of different music – he wants to listen to the same song over and over and over. He won’t use public toilets. He won’t wear clothes with labels in and it’s a fight to get him into anything but jogging bottoms. He hasn’t had his hair washed in a year because for him it’s a form of child abuse (but it looks fine right now so I’m not pushing him), I find myself wishing we could sedate him to get his hair cut, and his toe nails… Sharing… oh my god we have some dramas around sharing when other kids are around, and with Martha too… sharing gives me headaches. But I can see he is trying to share, trying to take turns, he just finds it really hard right now… He won’t sleep in his own bed and my husband has been relegated to a different bedroom because neither child will sleep anywhere but with me. That needs rectifying. Seriously.

But then there are the obstacles that have been and gone… The first time we took him swimming it took half the session to lure him into the pool, half an hour of crying and protesting by the pool side, now swimming is one of his favourite things. Previously he wouldn’t go into a cubicle to get changed but that doesn’t bother him now. He’ll now actually sit on the toilet seat to use the toilet – hurrah! He didn’t like going in unfamiliar places previously, and ok this is still an issue, but we went on holiday a few weeks ago and every café, restaurant, tourist attraction etc. was unfamiliar and he didn’t batt an eyelid – even at the ridiculously busy Sea Life centre which I felt certain would cause him an issue.

The boy who didn’t utter a single word until he was nearly three now talks as well as other kids his age. I was told it was hard to teach these kids how to ask questions and the concept of “why”. But now he constantly asks “why?” about everything; “because why?” Autistic kids struggle with imaginative play they told me, before the diagnosis we were constantly being asked about his non-existent imaginative play. For a long time there was none, then very little. This seemed to concern everyone. But this summer his imagination has really taken off, he’s always pretending something or other and is so much fun to play with. He’s affectionate, funny, clever, determined. He makes me proud every day and I feel truly blessed to be his mother. He’s come so far.

There’ll obviously be new challenges as he grows, but it’s worth remembering there are things we were battling a year ago that seemed insurmountable, now we barely remember what they were.

 

As of the other main autism trait in our lives; the restricted, special interests. I must say I don’t worry too much about these. He loves to watch trains, but that’s fine, we’ll end each trip into town with a sit down snack in the railway station watching trains, the promise of which keeps him on the straight and narrow while we’re shopping. When he’s doing something he loves he understandably wants to stay far longer than we do, but we’ve found 5 minute warnings work well for us, along with using an outside authority as a reason we can’t stay any longer (this seems odd to me, but it was professional advice and he accepts the word “no” coming from an outside authority instead of us), and we often lure him away from one favourite thing with the promise of something else he loves; “Let’s go catch the bus, you can sit upstairs and pretend to drive it!” Trips into town are reasonably stress free now. Just so long as the bus company don’t send a single decker… These things don’t always work; he would have spent the entire holiday in Scarborough standing by the carousel just watching it if we’d let him, and we endured many “walks of shame” along the seafront practically dragging our wild child along between us. Yeh that got pretty stressful. But by and large, his special interests are cool with us. I guess I’ve always had “special interests” too, so I don’t see it as a big deal – except when the pursuit of his special interests stops me doing mine!

I get so confused by the whole ASD thing, I don’t know which aspects of his behaviour are ASD and which aren’t, what’s “normal” and what isn’t. Back in the late 70s and 80s technically speaking I was also an ASD kid growing up with an autistic mother, so how do I know what’s meant to be normal behaviour? Who gets to decide? All kids seem pretty strange to me, all people seem pretty strange. All kids have challenges, all kids drive their parents insane, refusing to share, wanting to do weird things, watching the same DVD over and over again...

He’s doing just fine. He is just fine as he is. Rather than autistic I prefer to think of us as not quite so neurotypical. Yes the autism label helps sometimes, our current school situation being the primary example of how, but it’s not who he is, it’s just a bit of him and I don’t even know for sure which bit!

Sometimes I call myself vegetarian. I’m not. I eat fish too. But if I’m going to someone’s house for a meal it’s just easier to use the label “vegetarian”. People have heard of it, I don’t really have to explain myself. If I say I’m pescetarian for starters not everyone has heard of it so I have to explain what it is, which usually includes me having to explain why I think it’s ok to eat fish and not meat, justifying that I think it’s ok to eat meat too if you like it, I just don’t, so please, go ahead, though preferably free range and humanely killed, but I’m not judging you…! And actually I only like a few types of fish so it starts getting really complicated.

“So I’ll cook lobster then, or prawns…”

“Er no, I don’t really like lobster or prawns, I don’t really like my food to watch me…”

It’s easier for everyone involved if I just call myself vegetarian. But no, I’m not really vegetarian. And he’s not really autistic either. We’re complicated like that. Tell me who isn’t?