April 12, 2015 – Autism Awareness Month, Ali Family Autism Truths #12
Sunday night and we’re in the homestretch. Another spring break under our belt – seven days off from the school/home therapy routine. I’m pretty proud of D for rolling with the punches and trying new things. We began the week going in different directions, with the rest of the family headed out of town to a big wedding, and D and I hanging back at home. And, it was a comfortable week: D and I drove a few hours to visit my parents and then came back to spend the rest of the week chilling at home. I’d call it one of our better spring breaks, alhumdullilah.
When we first began dividing and conquering for different family events/vacations (and of course we still plan out vacations or outings as an entire family), I worried what kind of precedent it was setting. Was this going to be our life? Who stays back with D? Will there be more and more things he can’t do with the rest of us? I spoke with families who were in similar situations as us making similar decisions. Or other autism families who refused (for the most part) to do things apart from one another, and somehow made it work. Was that the right way to do things? Were we making the wrong decisions?
The truth of it is that we all do the best that we can by our family. I don’t like having vacations or running errands or doing other things without D. But I’ve (mostly) come to terms with because it is better for him at times, as it is better for his younger sister and brother. And I’m trying to wrap my head around the fact that families with neurotypical children do this too. So why do I feel the need to justify our choices when it comes to what is best for D, our other kids and our entire family in conjunction with this autism life?
Sometimes I think — no, let me start that again. I know that we, as parents, are our own worst critics. Are we doing the right thing? Did we try the right treatment? Have we not tried the one thing that would really help him? Should I have made him stay at the dinner table and finish his meal instead of feeding him on the sofa? Am I fostering independent living skills? Is he too dependent on us because we’ve done too much for him? Should we have all gone there together? Is allowing him to stay at home copping the easy way out? Are we fracturing our family even further by doing things apart?
Are we using his autism as an excuse, or our we really and truly considering when it’s necessary and good to push him and when it’s necessary and good to let him be?
These are ongoing questions that will always haunt us — me probably most of all in our family. (My husband has an enviable character trait of making a decision and then not second guessing himself.) But I refuse to let these questions cripple us. Because even though the mistakes we’ve made with D along the way, or the things we missed, or when we misunderstood him or didn’t understand what he was trying to convey to us at all — even though all that continues to metaphorically kill me a little each and every day, beating ourselves up over decisions and mistakes only leaves harmful scars and bruises.
And what good is that? So we do the best that we can, pray that it was right. And I pray that when D and I meet, face to face, eye to eye in a time and a place when all the walls, complications, difficulties and hardships of autism melt away, when permanent ease is finally ours, that he forgives me for my mistakes and tells me we did more right than wrong.
