living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Archive for April, 2014

From where I am…

It’s autism awareness month. I’m sure you’ve seen the light it up blue requests, the bombardment of awareness ribbons and colorful puzzle pieces, and the horrible contrived “post this to your wall if you care at all about autism, 98% won’t and are essentially the scum of the earth” type posts. I refuse to be coerced to posting something that spreads guilt and judgement – I refuse to post that type of awareness.

So instead of posting any of that fluff I’m going to tell you a little bit about living in my world. Today, 2014, with Elijah who is now almost 9. I’ll tell you about the guilt and judgement I do allow myself to partake in, and how I let it damage me and Eli.

It is Wednesday, so we have to go to dance after school today for the girls. It’s crowded, there are all kinds of kids everywhere and a gaggle of parents waiting in the smallish waiting area. Eli has been in school all day and because of scheduling Kyle is left to hang out with the boys at dance for 2 hours with the boys. The other kids run about, Eli takes this as a sign he can do the same, only he has less self-control. He smashes into walls, talks louder than everyone else, and grabs at other kids’ stuff, he hums and makes sound effects loudly. It’s frustrating, and embarrassing on some level. I don’t want to send a note to the entire club telling them our life story. That’s private. But it opens us up to all kinds of judgement.

And on the note of privacy, it astounds me how many people feel they have a right to know what’s “wrong” with him, people we’ll never see again, like people in line at the grocery store.

As much as it would be easier for me if autism was almost invisible on Elijah, it’s not. Most can plainly see after a smallish amount of time that there’s something just a bit different about him. That should be enough. I shouldn’t owe anyone any type of explanation.

I’m a soft people pleasing sort. Having a kid who can’t clue into that, or even understand why anyone would be, can be difficult for me.

Some places we go people will easily tell me it’s a discipline problem, or not so quietly say under their breath that he should be left at home, if he can’t behave. Other times I just get looks that convey the same message.

If people only knew how much more discipline my kid receives compared my other kids (who behave appropriately), or how many social skills classes we’ve taken, or how much socialization we’ve done.

There’s this tremendous amount of side eyes shot at me. I still have the hardest time dealing with it after all this time. What are we supposed to do? Stay home all the time? That comes with another type of bad parent judgement – “She’s not doing anything to help him make the situation better” judgement. It’s 6 of 1 half a dozen of another. Trust me, we skip out on a large number of things just because we know it will be too difficult either for Eli or us, often at the expense of our other kids.

There is so much to worry about when you have a child with special needs: acceptance of (his and yours), socialization, if he’ll ever have any friends, appropriate behaviour, wondering if you are doing everything you can to give him the best shot in life, education and how that will look, and the fact that everyone will judge him as less than for the rest of his life.

Guilt seeps in everywhere. I don’t have the time to work one on one with him every minute. I want to go unnoticed at an event. Some days I want him to at least act normal. As I said – guilt, for not accepting life as it is.

And so I walk forward, Elijah walks forward, and with numbers continually on the rise 1 in 68 according to the CDC this year, many more walk with us.

Some days we will navigate this life with ease, and others will be like walking over hot coals either for him, me, or the others in our family. It’s the only path we know, it’s beautiful and ugly. I love it and hate it. I will continue to strive for guilt and judgement to roll right past us without letting it affect us negatively. Elijah already does. It’s one of the beautiful things about him, he doesn’t see much in letting others’ opinions of him affect him… at least not often.