Let me say up-front: I know we are lucky. 12 months ago (7 months ago, even), the hardest thing was keeping Mr. A alive. Now, the hardest thing is knowing if it’s enough.
It. Anything. Everything. Too much or not enough?
When we got A’s microarray results, all I wanted to know was: will he be happy? And no one could tell me, and believe me, we had reason to doubt. I am lucky, because I used to work with autistic children and learned to love fiercely those who will never. (Never what? Does it matter?) So when being told that my firstborn would never walk, talk, or potty train, it wasn’t the hardest thing to say: so fucking what.
For me, if I could not talk, I would be deeply unhappy. If I relied upon others for all matters of self-care, I would be humiliated. For Mr. A…well, right now he doesn’t care that I change his diapers. Will he ever? Abandoning the dreams I had for him (and his brother, who still carries those dreams in his blue eyes) before his birth wasn’t that hard. I wanted those things—playing basketball, riding a bike, making friends, having lovers, going to college, finding a fulfilling career, finding a life partner, all that—because that’s what I thought would make him happy. If he never needs any of that, so be it.
But this is where it’s hard, because who decides. I don’t want to hold him back. I don’t want to make him miserable demanding that he do things he will never do. To take the long view with Mr. D. (as far as I can tell, anyway), isn’t that difficult. I will make him miserable for a while, teaching him he doesn’t always get his way, has to learn to pick up after himself, must learn to read, write, mow the lawn, etc. I have a fairly good idea of the skill-set he will need to become a happy person at 18(ish). And as he grows, more and more decisions about things like this will be taken from my hands and placed into his own.
I simply do not know with Mr. A.
I do not doubt that he will walk. He does have some unusual anatomy, but I know he will do it. I just do not know when. Recently, I have begun to force him to sit more, in hopes of strengthening his core so that he can walk. And now I spend hours a day making him bare weight on his feet—sitting, in the exersaucer, leaning against the couch, against my legs or tummy, playing with his learning table. He doesn’t always like it. Sometimes he hates it.
What does it matter, if he walks at 2 or 4 or 6? At the heart, right now, I want him to be safe from Mr. D. D loves him. Loves him. But he is not gentle. We are trying. I am trying. I show how to gentle touch, on me, on his father, on the cats. He has learned to tap A rather strongly on the head (“patting” him), or to throw his whole weight on him in the sort of hug I cherish, but A does not. Mr. D is smart, for a one-year-old. But he is a one-year-old. He usually does not step or crawl on A accidentally. He just showers him with forceful love. He no longer goes for the eyes or tries to insert his entire fist into A’s mouth. We are making progress. But when A is sitting, he is safer. And if he were standing, if he could toddle away…that is my hope.
I do not know which will come first: for D to truly realize how he can hurt his brother and decide not to, even when I am not right-right there, or for A to learn to walk. I am pursuing both paths.
But how much to ask of A?
When Mr. A was almost 6 months, having spent more than half of that time hospitalized, I threw the Haberman bottle across the room. Enough was enough. He hated the Haberman, the Pidgeon, the long skinny one whose name I can never remember, the squeeze bottles, all of them. Hated hated hated. He was on nectar-thick milk. He hadn’t taken more than 5 mls since before he got his G-tube. Drinking from a bottle, I decided, was not a life-time skill. He can’t form suction, not with his cleft palate. He could get liquid into his mouth using all those special bottles and nipples, but it frightened him.
With good reason: he had nearly died, more than once, from liquids in his mouth and throat.
I decided to move straight to solids. He gets his nutrition from his G-tube, and we would work on swallowing using purees.
I think that was the right decision, but of course I am not sure. I do have doubts. Would he be eating more now if I never gave up the bottle? If I forced him through his panic, his breath-holding, his wild-eyed aspirating…would he eat now? Or would he have total oral aversion and hate me for doing that to him?
Should I put him in intensive physical therapy, so that I am not the one who holds him back by saying, “You are good enough as is”? Should I make him cry for four hours a day for 3 weeks, because it will be worth it in the end? Will it be worth it in the end?
How aggressive should I be, with speech and feeding once his palate is repaired? Should I teach him to fear unsafe situations or assume that I will always be by his side? How much is enough, for a child who is perfect right now?
How much is enough?
How can I know?
This is the hardest thing.