This Boy is Amazing

Rollercoaster days

Life with a child on the autism spectrum is a roller coaster. Sometimes it feels like a blessing but sometimes it seems too much to cope with.

But we cope – every family does, in their own way. For us it appears we have a few weeks of simply surviving, getting through the meltdowns and sleepless nights that would rival a newborn baby, then suddenly Small has a day that reminds us how wonderful life can be.

It’s nothing that would be obvious to an outsider. Maybe he gives me a quick kiss, perhaps he falls asleep a little easier or tries to dress himself. Today he was cooperative with toileting and cheerfully helped me sweep the floor. We cuddled in my chair and played Wii games and Snap. Insignificant things to some, but enough to feel we have had an easy day… a day that will give us energy and fire to get through the tougher times.

Today was a good day.

Melatonin

A while ago it was suggested that we start Small on medicine to help with his sleep disorder, and our initial reaction was that it felt wrong to drug our child to sleep. That we should just cope.

And we did. We survived.

We have spent the last years arranging our lives around his chaotic sleeping times… getting no sunlight at all for weeks on end… missing appointments… trying to be an enthusiastic parent at 3am… comforting Small when he was upset at sleeping through exciting activities and days out with friends.

We started to wonder whether the stress of this enforced lifestyle was having more of a negative effect than medication would do, so we spoke to a sleep consultant and saw a child development specialist.

Last night we gave Small the hormone that his body does not produce as it should. He slept all night and this morning he announced that he felt great.

It is a hard decision to make, to give your child medication potentially for the long term. But it is far, far harder to watch your child struggle without it.

Autistic or Quirky?

It can sometimes seem as though aspergers and verbal children with autism are looked upon as not having a real condition but as just being quirky. In reality it is just not that simple.

Having the ability to express his needs through spoken language is a huge help for Small that we are very grateful for, but it doesn’t mean he (and other verbal, “high functioning” children) do not face huge challenges in their day to day life. I can’t speak for all families, but I can explain a little about how our household is affected.

Firstly, while Small has a large vocabulary, he is not always able to use it and being stressed or anxious decreases the chances of him managing to form sentences. Sometimes he communicates through pointing and making noises and sometimes he goes completely silent – the latter particularly when a stranger asks him a question. Of course at other times his only communication is through aggressive behaviour.

An often unmentioned complication of autism is difficulty with toilet training. At six years old, Small is doubly incontinent and wears nappies day and night. From talking to other families with children on the ‘high functioning’ end of the spectrum it seems this is not as uncommon as you may think.

Sensory integration or processing disorders tend to go hand in hand with autism and they affect each person uniquely. The feel of some clothing has been described by Small as similar to a wasp sting, so he wears certain types of trousers and expensive ‘barefoot’ style shoes that are very soft and flexible. I spend more on one pair of shoes for him than I do on two or three for me, but if I expect him to wear clothes and shoes (which I do when we leave the house, at least!) then I figure that I need to get the ones that are most comfortable for him. We have a trampoline and a spinning chair in our tiny living room to give the proprioceptive input that helps Small to feel where his body is in the space around him. His diet is massively limited by the texture as well as the taste of foods and medicine is often rejected even if he is in pain, because he is so overwhelmed by taking it. As a family we avoid busy or noisy places because it is almost guaranteed to be far too much for Small to cope with. He feels the need to touch and smell everything, which means extra supervision is needed because the need to touch something may outweigh the voice in his head advising him that said object is hot or sharp.

Many families have find that traditional schooling just does not work for their spectrum kids and end up committing to home education as we have done, or battling to get Statements of Special Educational Needs put in place or funding for specialist schools.

Along with the autism itself, a lot of people will have what are called comorbid conditions, ie. Other conditions that exist alongside autism. Small has ADHD, severe hypermobility and a sleep disorder. After several tough years we saw a Child Development consultant and decided to give medication for the sleep disorder. Until a few months ago, Small would regularly be awake for 18-24 hour days, before sleeping a few hours and starting all over again. Imagine those sleepless newborn days, then multiply them by six years. Now function as an adult and as a parent!

As a family we plan every outing, every activity and every day around what Small can cope with. Friends and family have become used to us cancelling plans or leaving halfway through a visit.

I don’t want you to feel sorry for us, that’s not the aim of this post. I simply want people to realise that ‘high functioning’, verbal autism is not just a case of being quirky. It is a lifelong condition which affects entire families. It is not a curse, but it is certainly a challenge and to deny that is to do a disservice to the people living with it.