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.
Wow I can totally relate to #2. Always sticking out like a sore thumb. Walking around a beautiful garden the other day with my 3 year old who uses a walker and there was a little girl maybe 7 years old sitting down on a ledge, eating goldfish WATCHING my daughter like it was a movie or something! and i totally get the pedestal thing, when my mom/mother in law tell us that we’re doing a great job etc i wonder, do they say the same things to my brother/sister in law!?!?!?
Great point about your brother/SIL. I wonder…
I am totally not a complainer but I think I could add like 10 things to this list….being an outsider, the worry, the IEP meetings, the constant care, planning for a LONG future (one partly without us), self-criticism (not doing enough, doing too much, not good enough, etc.), not enough alone time, not enough spousal time,……on and on. I know most people just don’t get it. Like your #1, we think we shouldn’t complain and don’t want to. But when there is SO much, it’s only natural.
Andi, I can relate to #1 from a slightly different perspective…. Having adopted my two kids, I often felt that I didn’t have the right to complain or even express how hard parenting can be. After all, I wanted to be a mom so badly, asked everyone in my life for their support and prayers, and now my dream had finally come true… I felt it would be ungrateful to say anything negative out loud. That made it very hard and lonely for me.
I have a question for you. How do you recommend that parents deal with their kids staring at those who “stick out”? Yesterday we were at the pediatrician’s office when a mom wheeled her daughter into the waiting room in a sort of stroller-like contraption. The girl appeared to be about 8 and had some unique facial features, including one eye that appeared sort of swollen and almost shut – due to a permanent condition, not an injury. My son (age 6) commented, not super loudly, thankfully, “Mommy, her eye is red. What happened to her eye?” I answered that I didn’t know, and then he whispered, “It looks kind of creepy.” I told him that “creepy” is not a nice word to use to describe other people, and then I brought out my standard line that I use whenever he points out people who are overweight, different ethnicity, etc. “People come in all different sizes, shapes, and colors. That’s what makes us special.” And I reminded him that it’s not polite to talk about other people’s bodies. I don’t think the mom or the girl overheard us, and also they were speaking Spanish, so I don’t know if they knew English or not, but all the same, I felt extremely uncomfortable and did not know how to conduct myself. Should I avoid looking at the girl? Encourage my son to interact with her? Look at the mom and smile? Apologize for his comments? I have read in the past where people say to “act normal” in these situations, but the reality is that as soon as I start feeling self-conscious and hyper-aware of every thought and movement I make, I have no idea what “normal” looks like anymore. I’m really interested to know your suggestions.
Tara – I completely see how you would feel the “double whammy” when you adopted. So tough!
As to your question – even after a decade, it’s still tough and I tend to handle things on a case by case basis. If a young child asks “what’s wrong with her?” or something similar I usually assume that they’re just curious and I take a moment to educate them with a smile (which generally is an education for the parent, too 🙂 ). In the future, I’d encourage your son to interact, say hi, etc., like you would with any child. I don’t think it’s bad to feel self-conscious and hyper-aware. The fact that you feel those things just indicates you are human and that you have a kind heart, which is so much better than the alternative.