It’ll Never Be Enough

Ali Family Autism Truths #9 – April 9, 2016

The house is full of family tonight, with my sister-in-law and kids joining us for a late dinner. D’s used to his cousins in and out of the house, and finds his own spaces to chill when the human population of the home becomes too much.

It used to be that life more or less revolved around D, his activities, his therapies, his needs and what he could manage and could not. The rest of the children were much younger back then, and they didn’t have that many of their own activities to occupy their time. Younger sister A especially spent a lot of time driving in the car with D and I to and from school, to and from after school therapy, to and from any number of activities.

The kids were contained to my domain, and I laid out the schedule – and most often it was a D-oriented schedule. Now they have their own interests, activities, likes and dislikes. Their personalities fill the rooms of our home, and D is more so fitting into their routines then vice versa.

This is my perception, and I may be wrong. We still adjust a large portion of our lives based on what D is willing to do, what he is not, where we are willing to push him and where we listen and acquiesce to his need to retreat.

But still …

On a night like tonight, some of the kids are watching Jurassic Park on TV. Others are eating a late dinner and cracking jokes. The grandparents are relaxing downstairs, watching Pakistani dramas on YouTube or playing bridge on the computer.

And D wanders in and out of the scene, a definite part of the family, but also detached in a way that is unique to him.

It doesn’t bother him. It doesn’t seem to bother anyone else. But it still bothers me.

The truth is that as much as we are at peace with the life we’ve carved out and continue to carve out, with the lessons we’ve learned from D and the way we more and more follow his lead on decisions and things, I still fret over if we’ve done enough. Are we continuing to do enough?

There is a balance to be struck between living and enjoying life, and striving and working to mitigate the challenges of D and his autism. To live and let live, but always think towards the future and continue to push him hard to learn more and self-care skills and ways to effectively communicate with us and others.

To parent him and try to do what is best for him and what will hopefully help him in his life, and to try hard to hear him, understand him, listen to him in what he wants and what he doesn’t want.

Is it ever enough? Will it ever be enough? When is it ever enough?

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