It is a truth universally acknowledged that an able bodied child, with no faults or flaws, a perfect child, is worth more than a disabled one. The worst possible scenario for many parents is the idea that their child will not be ‘healthy’ – both in mind and in body. A sick, unhappy child, with poor quality of life, a throw away leaching all parental resources and stealing attention from their healthy siblings. No matter how bad their day is and how long the night was, parents of ‘healthy children’ always comfort themselves with the thought that ‘still, it could be worse’.
I am that worse. Ten months ago, when he was just over one and a half, my son was diagnosed with autism. That’s it, he suddenly went from being a perfectly healthy, chubby, if somewhat delayed baby, to being disabled. I joined a club I never wanted to be a member of and learned a new language. I have also learned that everything I thought I knew about disability and children is wrong.
I have read articles by journalists that describe the pain, the burden of parenting a disabled child. They say that it is like raising a toddler, but forever. There are scenes of these children, or adults, punching walls, banging their heads. We, as the readers, are invited to feel sorry for the parents and think how happy they would be if this burden were just suddenly ‘taken away’ or ‘cured’. Some of this is true. There is a burden, certainly. There is pain. But that is not all it is, and a lot of it is not a necessary consequence of disability but rather the result of our attitudes about it. So here are some reasons why I consider I am very lucky to be a parent to a child with autism.
He brings so much love into the world.
It can be challenging to spend time with my son. We cannot simply go to the beach, go to the park or go to a café when we like. He needs to be at home to nap because he is very sensitive to light and sound. He has an iron clad schedule. He needs to be at home to do therapy for five hours per day, six days a week. He will need to do this possibly for many years, all the way into adulthood. Maybe he will never be able to go to a sleepover, or enjoy a birthday party, or play with his cousins. Maybe he will. This does not mean he has to have a bad quality of life or that I am miserable.
My son is one of the happiest kids I know and he spreads happiness to all those around him. He understands that he is loved and he smiles and laughs most of the day. Mikie has followed me around the house like a little tail since he could walk. And it’s not just me. He flirts with his therapists absolutely shamelessly. Since he is also totally charming and has the most gorgeous blue eyes they don’t mind.
Sure, the reasons that he laughs are sometimes a mystery to us – he laughs at a tree blowing in the wind, he laughs at the ceiling, he laughs during bath-time while running back and forwards in the bath, and nothing is funnier than me trying to give him instructions during a therapy session. He spends a lot of time just staring at the window or mysteriously at the wall. Just consider how much time people spend learning meditation on expensive mindfulness retreats on high mountain tops to get to this state for just half an hour? My son is in that state almost permanently and it costs us quite a bit of effort to get him out of it. If he ever learns to sit still long enough, he could make a fortune teaching his skills to others!
I get the best hugs
My son is a sensory seeker – this means that he eats, licks and bites everything (other than food, that’s a whole other story!). It can mean I can’t take him to swimming lessons or to playgroup because he licks the walls of the pool or every toy, or the floor, and develops gastro with a side of bronchitis EVERY SINGLE TIME. But it also means I get more hugs and kisses than any other mum in history. If I have not been hugged and kissed in the last five minutes, chances are my son is asleep or eating.
He is also, in my completely objective opinion as his mother, the best looking and most adorable toddler that has ever lived. His cheeks are the most kissable and the sound of his laughter has been known to heal the sick. If achievements are measured not in university degrees but in the amount of love you bring into the world then this kid has already achieved more by the age of two and a half than most people do by the time they’re 70.
I have way more reasons to celebrate
How boring are the achievements of typical children? Going to preschool, beating someone at soccer, graduating high school. Boring!
Today my son ate a piece of apple, and yesterday he had some meat. We threw a massive party with my husband to celebrate (he stopped eating them and started spitting them back out again the next day, let’s just say it’s a work in progress.) I get to celebrate ten times a day. I celebrate the first time he understands the commands ‘stand up’ or ‘sit down’. I get to celebrate the first time he understands that he should put the puzzle piece into the puzzle, not slide it behind him. I get to celebrate when he learns how to point – even more so because it took me three months of doing it ten times a day to teach him and he only learned to do it at the age of two and a half! I get to celebrate when he learns to wave ‘hi’ and ‘bye’ – and I love the huge proud grin he gets when he knows he’s doing it right. I get to celebrate when he learns to give me a picture of what he wants in order to get it, instead of throwing a tantrum or crying. One day in the (hopefully not too distant) future I will celebrate when he allows me to put a sweater on him or learns to tolerate a blanket at night.
I celebrate these things and think of how lucky I am because if he had been born in another time and place, he may never have been able to do them. Without the fantastic people around us, the programs, the therapies, he really would be living a life locked in a world of looking at his fingers, sliding things around on the floor, and tantrums. Worse, he might have lived in a world where he would be automatically locked into an institution, not able to see his parents, and considered to be less than human. I hope this world is gone.
Do not tell me what to do, just help me financially
When he was a newborn, I planned out Michael’s life. I knew what schools he would go to, had mentally signed him up to all the right co-curricular activities that he would start at 18 months, and was deciding to ‘gently guide’ him to a law degree at Sydney Uni. I may have named him after a former High Court judge. I am entitled to do that.
After the diagnosis, our plans have changed, but don’t feel sorry for us. We have some good plans to replace them. The school has changed. The uni degree may never happen. I’m angling more for electrician now, because of how much he likes bright lights, tools and cords. It would also be nice to have a useful person in the family for a change. Our plans involve more things like ‘is able to catch the bus’ or ‘may be able to go to the shops to buy milk’ but they are still good plans and we will be just as proud of him if he achieves them as if he had become a high court judge by the age of 35. More so, because he will need to work harder to get there than many of the brilliant lawyers I know.
But I know that with the NDIS and all the other supports available he will have a chance at learning to communicate (even if he never talks). He will learn all the skills he needs to survive and if the current reactions of girls is anything to go by, he will have an entire harem by the time he is sixteen (not that I am encouraging this). I have seen adults with autism that are engineers, chefs, musicians, artists. And others that are not any of these things but are incredibly loved and valued. But I know that the best thing to do with the parent of a child with autism is not to feel sorry for them – it is much better to help them financially, so that they can give their kids the early intervention they need now, to stop them from banging their heads against the wall later. It is also better to get to know these wonderful children themselves and learn all that they have to offer because you might grow to love them (nearly) as much as their parents do. After all, wouldn’t it be great if we could all learn from them how to be happy, by ourselves, just looking at the way the trees are waving in the wind?