Recently I read an article on the BBC News website about how parents of autistic children are expected to be relentlessly positive about their children, and celebrate their differences and triumphs. The article centred around one parent who was discussing how difficult that can be, and how she wishes her children don’t have autism – she says “I often feel there’s not really space in the autism world for a mother to say ‘I really wish this wasn’t happening, I don’t feel blessed, I don’t feel strong, I don’t feel like it’s all happening for a reason'”.
I do think that any time anyone tries to impose a one-size-fits-all attitude to any subject, that’s going to be unacceptable for some people. I’ve done a lot of thinking around the subject since I read this article, and the opinion I’ve landed on is, if you can take pleasure and pride in your autistic children’s achievements, that’s fantastic. And if your life, and theirs, is difficult and challenging and demanding and exhausting because they are autistic, and if sometimes that just plain brings you down and makes you unhappy, and you wish it weren’t so, that’s just as valid an experience.
The autism spectrum is very broad, and it so happens that our children are articulate and intelligent. So for us in the House of Autism, we have good times and bad times. Even if we could, we wouldn’t take away the boys’ autism, but we do wish they didn’t have some of the associated problems. We wish they were happier. We wish they found it easier to deal with unexpected changes, to have more friends, to not explode in anger at what seem like trivial triggers. On the other hand, if all of these were true, would they be autistic? More importantly, would they still be themselves?
There are days when we are exhausted, and fail to cope. There are days when they’ve had a bad day, for whatever reason, when life does seem dark and the future seems very uncertain. So I do understand that an insistence on relentless positivity is not balanced, or helpful.
But it so happens we’ve had some good times this weekend. And I wanted to share them – partly just to emphasise that it’s not all always a dark time, but mostly because I could bang on about my children and how wonderful and marvellous they are for hours on end. And that’s nothing to do with their autism, their struggles or their capabilities – it’s because I’m a mother:-)
This weekend The Husband is having a well-earned break from his role as primary carer, and is at a writing retreat concentrating on his other job as an about-to-be-published author. So I am looking after all three boys by myself.
Since I work away for part of the week, this is something that The Husband does most of the time, and I’m well aware that this is a full time job and a half. When he has a break, which we try to arrange for once or twice a year, I look after the boys, and apart from last year (when we had a crisis with the cat with the pacemaker at the same time he was away and I was also trying to work from home and it all got a bit stressful), I cope pretty well.
Times like these do give me more one to one time with the boys though, which is great, and fun, and full of unexpected bonuses. Yesterday, I had to pick up a parcel from the post office, which is somewhere on an industrial estate in Pontypool. I looked up the postcode but it’s not obvious where exactly it is, and the card does not give the full address. So off I went with Youngest, who is nine next week. He had the card, and instructions to tell me if he saw a sign with ‘Industrial Estate’ on it. He saw the sign – I did not. Off we went down an incredibly long narrow road, which continually looked as if it was about to go up the side of a mountain. Youngest had instructions to look for a building with the same logo as the one on the card, while I concentrated on not driving into other cars or lampposts. He spotted the Post Office building – I did not. Without Youngest in the car, I would have been driving around Pontypool for hours.
Then Middlest, who is 12, was playing in the back garden on the trampoline, when he decided to mend the washing line. He found various of those strange shaped pieces of metal that will come in useful later, and astonishingly, they came in useful. He also knows the workings of the washing line gadget and how to make it longer and shorter, whereas I have no idea – and now we have twice as much washing line as we did, and high enough up off the ground so that the towels don’t drag in the mud. I hadn’t even been aware there was a problem – but he saw an opportunity to make things better, and so he did.
Meanwhile we’ve been struggling to feed Eldest a decent diet. He’s 15, and ravenously hungry most of the time (when he’s not sleeping), but his food preferences are limited. So he decided to make an Obama list. Apparently when Barack Obama was in office, in order to reduce decision fatigue, he supplied his chef with a list of all foods that he liked, and the chef would just pick something from the list and serve it up. So yesterday, The Husband and I received a list by email of all the foods Eldest will eat – with a lovely picture of Mr Obama at the top. Eldest was so impressed at how that cleared his head and reduced his stress, that he’s decided to do the same with his clothes. In order to do that of course, he’ll have to tidy his bedroom and excavate all of his clothes, many of which have erroneously been declared missing.
Ok so Youngest made a hole in the wall after a row with Middlest, Middlest keeps forgetting his homework and has immense trouble with focus, and Eldest is a typical antisocial grumpy teenager with a bedroom that looks as if someone shook it up like a snow globe, but there are moments of pure joy when I’m so proud of them. It may be that we’re very lucky – or it may be that even those parents in the worst of situations have the occasional moment of pure joy. I really do hope it’s the latter.