One of the questions I am asked most as a mother of two young boys with Autism Spectrum Disorder (ASD) is how my life is different to the lives of other parents. Probably the better people to ask are my sons, since their voice will give you deeper insight into ASD than mine ever can. But since they are only seven and four, I try to answer as best I can, although it’s a difficult question to address.
My life, like yours, is framed by working, washing, cooking, cleaning, navigating sibling rivalry, and tidying up Lego. Like you, I am faced with unique parenting challenges, stemming from the undeniable truism that my children forgot to read whichever parenting textbook I did. Probably you don’t own multiple sets of noise reduction headphones, and your child probably doesn’t squeal in pain and fright at the shiny, reflective floors in the shopping centre, or at the cold section at the supermarket. Probably you don’t own a sizeable stash of Velcro dots so that you can put a visual schedule of every day’s activity on your wall so that your children are prepared for the day’s events. Probably you don’t need to pack a special lunch of only beige and crunchy food to send to your child’s day-care because that’s the only type of food he will eat. But maybe you do.
When my eldest son first was diagnosed, I was told to read Emily Perl Kingsley’s description of raising a disabled child, Welcome to Holland (1987). It’s beautifully written and it still moves me to tears. But it doesn’t acknowledge that each time we become a parent we all embark on a largely unknown journey, whether your child is born with a disability or not. So I’ve devised my own analogy for parenting a child with ASD which is undoubtedly less picturesque than Kingsley’s, but, I think, more realistic.
Having a child with ASD is very like having prepared for a game of Uno only to be dealt a hand for Rummy.
Becoming a parent is like playing Uno. We commit to the game, we learn the rules, and we try to become proficient players so that we are able to contend with the hand with which we are dealt. When our child is born, that hand becomes clearer. We might be lucky to have a number of Action and Wild Cards (a good sleeper or good eater, for example) in our hand. Or we might not. It might be an easy hand to play. Or it might not. It’s impossible to know what luck (good or ill) we might be afforded with the birth of our child, and many other factors (the other ‘hands’ in our family, the ‘deck’ that structures our lives) impact on how we play our hand.
Having a child with ASD is very like having prepared for a game of Uno only to be dealt a hand for Rummy. Rummy isn’t the hardest card game, but it’s more complicated than Uno. Undoubtedly, there is an element of skill and luck in both Uno and Rummy. But the rules that apply to Uno don’t apply to Rummy. Take, for example, the ‘rule’ that almost all paediatric dietitians will tell you that children will never starve themselves. That is, of course, except if they have an acute negative sensory reaction to the texture of food and drink in their mouths, in which case they would rather starve than put themselves through the physical pain of eating. All that preparation I did to get ready for my game of Uno was inadequate in the face of the game of Rummy I ended up playing.
It’s not just that the rules of Rummy are far more extensive than those of Uno, but that having to learn those rules as you’re playing adds a layer of complexity and pressure. There are inevitable failures and plays that just don’t work, and occasionally I find myself longing for the relative simplicity of Uno. It’s not that I discount the potential for failed plays and wrong decisions (and plain bad luck) when we’re parenting neurotypical children: my middle son is neurotypical and he bamboozles me on a daily basis. But in many ways, there is less at stake. When I make a wrong call with my neurotypical son, he might have a tantrum or refuse to eat his dinner. When I make a wrong call with my neurodiverse boys, one may fail to eat for the following week, and the other may have such intense night terrors that he is unable to function. A bad play in my Uno game is usually managed on my next turn; a bad play in my Rummy game often takes many, many turns to rectify, and often is accompanied by stunning repercussions in the interim.
When I make a wrong call with my neurodiverse boys, one may fail to eat for the following week, and the other may have such intense night terrors that he is unable to function.
The other thing about Rummy is that it is often difficult to find other people who are willing to learn all the rules well enough to sit down and play with you. Most people already know the basics of Uno, and even if they don’t, you can teach Uno on the run. But, well, Rummy is an acquired taste, a learning experience that takes time and patience to embrace fully. Lots of people simply choose not to play, or just don’t have the time or inclination to fully understand all the ins and outs. That’s okay. It’s not a criticism. It’s just the reality that many people don’t want to be burdened by playing a completely different game. Rummy is not intrinsically lonely, but it is certainly harder to surround yourself with people ready to support you and join in the game.
What is most important, though, is that Rummy is a beautiful game. There is immense pride when you’re able to play those skilled, sophisticated moves that work not only successfully but magnificently. I find no less pride in those moments in my Uno game, it’s just that in my Rummy game they are fewer and take more work. Fundamentally, I love cards. Maybe it isn’t particularly sensitive to compare parenting your sons to playing a card game, but for me parenting neurodiverse children isn’t so very different to parenting neurotypical children – it’s all cards. It’s just about accepting the hand you’ve been dealt and embracing the game that you’re asked to play.
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