Any changes to my autistic son’s routine or introduction of new experiences, have to be carefully thought-out and pre-planned. It gets frustrating. A lot. Some days I just want to try something new with him without doing the exhausting ground-work; surely there’s a chance it will all turn out OK, that it won’t end in a meltdown or the creation of a new anxiety. Those times I remind myself of a little story about a bath.
About six months ago my son was having a bath. He doesn’t like water on his head or face. I had become frustrated with not being able to wash his hair; it was starting to smell and look unpleasant, and I had become worried both about the health of his scalp, and about what other people would think it said about my mothering skills. So I decided enough was enough; I was going to wash his hair that night. He’d be fine…
Together, my husband and I poured water over his head, put some shampoo in – avoiding the eyes of course, washed it out, dried him off. He screamed, cried, struggled, shook uncontrollably, and scratched himself so much that he bled. But it was done, and he would realise now it’s not so bad, right..?
The next night he wouldn’t get in the bath (crying, struggling, screaming, scratching himself to the point of bleeding). I tried to compromise with a sink full of water – I’d just wash him with a face-cloth as he stood by the sink. He refused that too – in fact any collection of water that was more than a cup-full was no a no-go zone for him now. I had to resort to using wet-wipes to clean his body.
Slow step by slow step we had to undo the anxiety we had created in him that fateful bath day. It took many months to work our way up from washing his body with a wash cloth as he stood by the sink, to getting him to quickly put his feet in a small bath of water, to eventually getting him to sit in a bath of water again. He’d still shake with anxiety and scratch himself until he bled each time, but the screaming and crying reduced. Once he started having baths again I had to dry him very quickly afterwards to reduce the shaking and scratching, and I had to dry him in a particular order. For instance, his feet had to be dried first, and had to be bone-dry.
Eventually we worked up to putting water in his hair, just at the back. Then a little on the top. The current point we are at, he allows me to wash his hair if I hold a dry flannel over his face, tip his head back, and count to ten as I make his hair wet and as I wash it out. He’s decided to start wearing daddy’s goggles too, which looks suitably amusing and makes both him and us laugh. He still gets anxious and it has to all be done as quickly as possible. If I leave out any of those considerations (forget the flannel or forget to count), it works up quickly towards a meltdown.
I only get to put water on his head every second day. He needs the day in-between to get his anxiety levels back down. If I try to do it each day, then he gets all upset again and then I have to take two days off in-between until he’ll let me try again.
If I had taken the time all those months ago, to prepare my son for the hair wash with a warning (maybe a social story) and possibly a reward system, we all could have avoided the resulting mess. I should have worked up to it step by step, over a matter of days or weeks.
Days like today, when his autism feels like it’s suffocating me by not letting me be spontaneous or break from routine in even the smallest way, I take a deep breath and remind myself of the water wars; because however annoying it may be to lack spontaneity in life, it’s a whole lot more annoying to spend months battling the anxieties created by trying to be spontaneous.