So we’ve had a few weeks in hospital, and a few things have happened.
On the one hand, I’ve been sort of snapped out of my pity party mode. We were in this place several years ago at this same time of year in a very different situation. Back then, we didn’t know if we would ever take our son home, or if we were enjoying the only moments we would have with him. The doctors predicted that he would never walk, and would probably never speak at all. They recommended that we “discontinue treatment” because the prognosis was so poor that they saw little hope for his future. (We were appropriately horrified, btw)
So to be here with such a thing as a broken leg, well, that’s not so bad. No, it’s a flippin’ miracle! I mean, the boy can ride a bike! I mean, it sucks to see him in pain. It stinks to be here, but I’m hardly beside myself with woe that such a great tragedy has befallen us.
And he can laugh and play and talk…
And that’s where this other process has been happening. On the other hand…
It was noticable, but less critical at first. Doctors ask, “How did you break your leg?” and he maybe doesn’t answer, or says, “I fell,” or answers clearly but they don’t understand.
A few days later the problem gets bigger. “How’s your pain?” or “Does your leg hurt?” or “How bad is it on a scale of 1 to 10?” or “What does this feel like?” or “Do you want some medicine?” And his answers are unexpected, absent, or not helpful. And as time passes, my son gets more and more mistrusting of these scary strangers who seem to randomly ignore and hurt him. He screams or hides under the blankets if I am not available to translate. He clutches at my clothing when I try to leave the room to go to the bathroom.
At first I was angry. How can these people ask such stupid questions? How can they work with children all day every day and not know better? Do they even know what autism is? But then I heard countless children answering these questions - questions that are difficult for me! I mean, scale of 1 to 10? You’ve got to be kidding! But 4 year olds can answer that accurately.
I am astounded.
And daily stumped when it comes to advocating for appropriate treatment for him - how much pain medicine does he need? - how do I convince the disbelieving doctor that this is what pain looks like for him? - how should I discuss their notion of patient consent and/or right to refuse considering his the communication barrier? …
And something else has been dawning. A new sort of acceptance. A realization that, just because my son is doing remarkably well - is progressing, interacting, is happy, engaging, etc. - that doesn’t mean that none of this is going to go away. Just because other people don’t always see what he struggles with, doesn’t mean it’s not there. Just because it’s easy to blame a bad day on someone’s stupid questions or bad parenting or too much noise, or sickness or… something else… doesn’t change the fact that my boy has autism.
And when he has a good day, or a good week, that doesn’t change it either.
I think that’s been part of the struggle. The diagnosis came so late that I have heard years of doubts and blame and “couldn’t be”s. And it became a habit.
So, during these last few weeks in hospital I realized that this is the way that it is and it is not going to change. And also that it isn’t just OK. It’s miraculous.