Living with a child who has aspergers has its ups and downs. Dad Roland shares his experience with his son.
Grandparents are a competitive bunch, and the birth of a grandchild seems to make them eligible for the Grandchild Olympics, where proud grandparents pit their grandchild against other competing grandparents in events such as weight, length, walking, talking, laughing, intelligence and beauty.
As parents, we discretely enjoyed this competition by proxy, particularly when our beloved offspring was beating the competition, and less so when our child was not faring so well. However there came a time when, after a succession of poor performances in the Grandchild Olympics, we had had the shadow of concern for our child.
School does little to assuage those concerns, and merely solidified them. Well-meaning teachers assured us that everything was fine, which was comforting to hear, but unfortunately reality trumps even the best of intentions.
Eventually, we took our beloved offspring for tests to determine if there was anything objectively “wrong” with him. I remember those tests, and the verdict afterwards: “Your son has Asperger’s and issues with fine motor control.” said the specialist.
My response was simply. “Okay, so how do we fix this?”. Alas, the response returned “We can’t.”.
Even now typing this a decade later, I can feel a rush of grief welling up inside me. My perfect, beautiful son was disabled. Life for him will be an uphill struggle, every day a fight against his disability simply to keep pace with other “normal” children. A race that he takes part in to finish, but never to win.
It wasn’t a happy time for us.
Fortunately, there is help available. And once diagnosed, a variety of people enter the picture to assist and/or comfort parents and child, and make the best of the situation. We quickly find out that Autism really is a spectrum, and as such, no two Autistic children are quite the same. There are recognisable Autistic traits, but much like at an “All you can eat!” buffet, no two plates leaving the counter are filled in quite the same way, though the buffet is the same for everyone.
So a lot of time is spent trying to work out what would help him, what wasn’t helping, and what was upsetting him in one way or another. (Noise and bright light, when he was young, mainly noise now.) Advice about sleep was given which, whilst undoubtedly well-meaning, turned out to be utterly useless. Then there was school, where many teachers had lowered their expectations too much, which my son was delighted with, but we knew that while he had difficulties, he is also naturally bright.
He is also naturally lazy. Quite a challenge to push him without triggering a stress meltdown.
Oh! Didn’t I mention the stress meltdowns? The best way I can describe a stress meltdown is to try and imagine the following scenario: You’re having a tough time. Things are really on top of you at work and you’re struggling to keep your head above the water. Even though it’s the weekend, you’ve been roped into driving your wife to the sales, so you can spend hours wandering around with her while she tries on a million different outfits and you try and sound enthusiastic about them. A car pulls out in front of you and you have a collision. The other driver leaps out of their car and starts screaming at you while you survey the damaged cars. At that precise moment, someone insists you do a crossword for them. You don’t much care for crosswords at the best of times but they are very insistent you do this crossword right now. In no uncertain terms let them know exactly what you think of them, their crossword and the world in general.
Get the idea?
Later, just as we all got into our stride, with school teachers familiar with him and everything going nicely, it slowly dawned on us we would have to find a secondary school for him, and all the help and routine we had carefully crafted and put in place was to be thrown into chaos.. I realise that was always on the cards, but when you’ve spent time struggling to get junior school done and dusted, it rather seemed like “Thank goodness we’ve sorted all that out!”. Choosing a secondary school was a difficult process that involved a lot of time, frustration, and a solicitor to try and get what we wanted for him. Despite our best efforts, at the 11th hour the school we had fought so hard for the funding to get him into, decided they weren’t prepared to accept him, having previously said they would. This was quite vexing, to say the least. But we got him settled into a different appropriate school eventually.
I have the urge to offer some advice at this point, but the best advice I can give is to talk to other parents of kids with special needs. They are the best resource of local advice.
Anyway, eventually, our strange life settled into familiarity, and we accepted and even embraced our new “normal”. We realise that Autism is not the endless succession of disappointments it seemed to be at first, but in some ways is almost like a cursed superpower. Okay, it was the last superpower in stock at “Superpowers r Us” after all the cool ones like flying and x-ray eyes had been taken, but nonetheless, it can be impressive.
So while my son is engrossed playing his Xbox whilst simultaneously watching a video on YouTube on his tablet, he is also listening to every word of our conversation on the other side of the room, interjecting to correct us or ask for additional information as appropriate. Not the coolest of superpowers, and while it may not be as cool as flying, the upside is we don’t have to worry about monitoring a child who can fly.