My Biggest Fear

There are so many things I have not learned how to deal with well when it comes to autism. Coping is a never-ending process, I suppose, and we all have our limitations. Mine are fairly gargantuan.

I still cringe when Daniel is having a billboard-sized autism-moment in public.

I sometimes display a total lack of patience when I am trying to get Daniel to stop the stims and participate in life the way I want him to ... the way his sister does ... the way I thought he would, too, back in the day when baby-giggles and first steps were enough to make me feel like I was the luckiest woman in the world ... in the days before autism entered stage-left and took over the show.

And I get frustrated at the end of a long day when he hollers. Screaming, you see, is one of his primary ways of getting my attention -- especially when we are in the car. He has something he wants me to know, and I should be sympathetic. If he could express his thoughts with words, after all, he would. And whatever it is, it obviously is important to him. But he can scream so loudly that one of these days, surely, I am just going to drive right off the road.

So many things I have not managed to do ...

And here is THE ONE -- the one thing I am not able to do that is of paramount significance:

I have not learned how to let go of the fear of what will happen to my son when I am six-feet-under.

I know there are so many special-needs-parents out there struggling with this fear -- this anxiety that can overwhelm you when everything is going relatively well -- emphasis on "relatively." This fear can sneak out of the dark and take you down. It is vicious; it is malicious; it is all-consuming.


I know that I can make plans for him. I can move to another state with better programs for adults with disabilities, and given that I currently live in Texas, I probably will. I can find a group home or some other living environment where I think Daniel will be safe. And even though I won't be around anymore to make sure that Daniel's days are dominated by the things that bring him the most joy, I can search for an arrangement where somebody at least promises trips to the pool, days at Six Flags, and Dairy Queen cones with chocolate coatings.

But when I am gone, will it really happen?

What will happen to this boy -- MY boy -- the baby who started moving in my belly whenever I turned on Norah Jones, the toddler who took his first steps from the couch to my extended arms, the eight-year-old who finds joy in so many things but who cries the tears that pierce my heat like arrows when he is struggling to tell me something and I just ... don't ... know ....

What will happen to Daniel when I am no longer here?

It is the fear that will haunt me, even though I have gotten fairly good at living in the here and now ... it is the fear that will haunt me until I take my very last breath.