As I put the finishing touches on my son Mies’s tenth birthday cake, the same army themed cake I’d made at his request for the past three years, I heard a muffled, “Mom, I’m doooone,” coming from the bathroom. Mies was ready for me to come wipe his butt.
Mies has been potty trained since he was five, but, now ten, is still unable to clean himself up and has frequent accidents. It’s one of those things none of the books on autism prepare you for.
It limits the opportunities open to Mies and the activities we as a family can engage in. It is an ever-present topic at IEP meetings. Mies’s teachers insist on barraging the poor kid with “social stories” about stopping what you’re playing and asking to use the restroom politely and appropriately, but that’s not really the issue with Mies.
The sensory issues children with autism have don’t stop at the bathroom door. Some can’t stand the smells and feelings involved and refuse to be any more part of it than they have to be. Some, as in Mies’s case, simply aren’t mentally connected enough to their bodies to feel its cues before it’s too late. Most of the time he does, but even an occasional miss at age ten is a problem.
We’ve managed to cut down on the pants wetting by watching for the scootching around of the pee pee dance and telling him to go, even though he insists he doesn’t have to. It’s not as easy to prevent the other accidents.
I notice he’s not embarrassed the way I would have been at his age, but it makes him sad because he’s afraid we’ll be mad. Mies falls apart any time he thinks he might be in trouble, crying with a look of such pure, wounded disappointment in himself on his face, it breaks my heart every time. No one tells you about that either. He’s truly the sweetest, most sensitive soul I’ve ever meet.
They tell you about the meltdowns, but not how they will get harder to take as the years go by, not easier. It’s not possible to get used to your child becoming completely overwhelmed by the feelings he cannot name, going into screaming, crying, thrashing fits over the most insignificant things. You take him somewhere where he will be safe and where the other kids will be at least somewhat removed from the noise and the stress of it. You listen to the screams and his kicking the wall as you try to keep busy. You try not to lose a little piece of your heart each time, but you never quite succeed at it.
No one can convince you, when your child is first diagnosed, that it will ever get easier, ever hurt less. How can the loss of the dreams you held for him ever be okay? And yet, you grieve, the wound stops stinging with every bump, just as the parents on the message boards said it would. That is, most of the time. Just as you’ve gotten used to the healing, to the wounds turned to scars, you find out there will always be bad days. Just less of them. You still have days when you cry, when it feels like no time has passed at all since that moment that changed your life, when before was divided from after.
You sit through speech therapy sessions, wondering if he will ever speak, trying to picture what it would be like if he never did. Maybe you pray that doesn’t happen. Then, one day, for some of us, it happens. He speaks his first word. And you feel joy of such intensity, relief, gratitude. You feel sadness and heartache too, and the guilt that follows. Always the guilt lurking somewhere.
You will never feel you’ve done enough, no matter how many battles you fight for him over IEPs. You grow patience that would shame the saints, but there is always more you could do. You will never be that mother in the Lifetime movie, so determined to save her child, she does. No one tells you this guilt and helplessness will be the undercurrent of your life now. Or if they do, you don’t remember anymore with all there is to keep in your mind now.
The books you read can only tell you so much because they are about autism. They are not about your perfect child, beautiful in his whole. The doctors you ask your questions of don’t take the time to look in his eyes and see the holy in him.
I wash my hands (twice, for good measure) and return to piping the green icing onto Mies’s cake to look like grass for the little toy soldiers to hunker down in. He runs around making the machine gun noises only he can, fighting his ongoing, never-ending solitary battle against the Germans. But he’s not really fighting alone. I am there with him.