January 26, 2015
Sharing Our Stories
Last week I was in the grocery store with Zach (one of his least favorite places on earth, so you know I was desperate) when in front of me I saw a woman with her son who appeared to be severely autistic. Since the waiting time in our line appeared to be, well, eternity, I made eye contact with her and introduced myself and Zach, who was by then immersed in one of his Dan Gutman books. As her son knocked a bunch of candy on the floor she looked at me and said “he has autism” to which I responded “I get it, my sons do too,” and I could see her instantly relax.
We chatted as autism parents do about doctors and school placements (hers in a self-contained classroom, my two in a similar setting and one mainstreamed in an inclusion setting,) and as the line moved and the cashier motioned for her to move forward her last comment to me was “at least your youngest is mainstreamed, he’ll have a normal life, nice to meet you.” I half-smiled and urged my son forward in line, with the thought “what is a normal life anyway?” resounding through my brain.
If anyone knows, please speak up here.
I get what she meant, or at least what I think she meant. Her son was older, on the more severe end of the spectrum and not likely to lead an independent life. I have a son like that too, and even on our best days together the weight of worry for his future is constantly on my shoulders, an often debilitating companion. It’s hard to have that uncertainty looming there, and dealing with it is a daily process for me.
But dealing with the child on the milder end of the spectrum is difficult too.
Zach is delightful a good portion of the time, but there are times where dealing with him is more difficult than almost any day I’ve had with Justin. Part of the issue is one of maturity (at least I hope,) and part is ironically that he is so verbal that he can articulate exactly what he wants, which unfortunately does not always mesh with what his father and I want. He can be very challenging, and even though I am confident he’ll one day live independently, our day-to-day dealings can be exhausting.
Love him to pieces, but yes, he can be exhausting too.
I think the point I want to make here is that every autistic child is different, but so is the family of every autistic child too. Some of us are in stable loving relationships and have that solace and buffer, and some don’t. Some of us have great financial resources, some do not. Some of us have a tremendous amount of assistance from family and friends, some have to raise their child basically on their own.
Some of us use chocolate to get us through the day (that would be me,) and some of us have willpower (not me.)
I think it’s so important when we autism parents share our stories with each other that we remember we’re all coming from different places. Someone might have what appears to be the mildest autistic child on earth but is a single mom. Another family might have an extremely challenging child but has tremendous financial resources at their fingertips. Some of us are just relentlessly optimistic no matter what life throws at us.
I am extremely jealous of those people.
I don’t think the woman in the grocery store line was judging me, or even comparing our situations necessarily. But her last comment could have come off as an “I have it tougher line” had I chosen to interpret it that way. I think we autism parents need to remember to listen to each other and not compare our situations, as nobody truly knows what’s going on in somebody else’s house or life. With this new year just dawning let’s try to support each other with our collective might, and not fight.
And I promise all of you I’m starting with myself.
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