My kids are awesome.
I love them more than anything in the world, and I love being their mom. Are they perfect? No. Are they wonderful? Absolutely. By the same token, being a special needs mom is awesome, but it’s far from a perfect life. Here are two things about the special needs life that I don’t like:
1. Feeling that I should never complain.
That’s right. I’m complaining about not being able to complain. As a mom of two special needs kids, there’s a certain amount of pressure to never let on that things aren’t hunky-dory, because people will automatically assume that it’s the “burden” of your children’s “special needs” causing the problem. The last thing I want to do is reinforce the already widespread notion that children with disabilities are burdens, so I keep things to myself – even if they have nothing to do with Down syndrome or cerebral palsy. No, I don’t always want to drive to therapy on Monday afternoons – but I also don’t always want to cook dinner, either.
You know that tired old saying that “God only gives special children to special people”? People mean well when they say it, but statements like it make me uncomfortable because they put me on a pedestal that I don’t deserve. It’s lonely up on the pedestal, because there’s a certain amount of pressure to be “special” all the time, and that means never complaining.
2. Always sticking out like a sore thumb.
I took Sarah Kate to buy some new softball cleats recently, and while she was trying some on I went a couple of aisles over to pick up a new bat and a new bicycle helmet, as well (yes, I know it’s been quite a few months since she got the bike…) When I returned, two families with kids were nearby, sorta-kinda looking at her, but not staring. I asked her to jog up the aisle because I wanted to make sure she wouldn’t trip in the new cleats, as she’s worn soccer cleats in the past and they’re built a little differently. As she turned around to head back toward me, I turned around and saw Every. Single. Kid. staring at her with their mouths open. Sigh.
A special needs label isn’t the only thing that makes a person stand out – any characteristic that’s different from the norm will do it.
I was one of only a handful of women majoring in electrical engineering when I was college (way back when!), and the ratio didn’t improve when I graduated and began working. Some guys were fascinated by a blonde electrical engineer, some guys were so nerdy they were afraid to talk to me, and others flat out didn’t think I belonged there – and said as much, though often not directly. One of my closest friends assumed right up until we graduated that I must have a 4.0 GPA (um, no…) because I was so stoic and closed-mouthed about my grades. I explained to him that when all eyes are on you, showing weakness isn’t an option.