I went to a workshop today; it’s a part of the series of workshops to become a certified Special Education Advocate. Today, I sat with Michele (co-author of this blog) as usual, but we also sat with three moms that we’ve never sat with before. (And we gave them the link to this website, so I hope she doesn’t mind me sharing this story.)
At our various breaks during the day, we share experiences and stories. At one point, one of the moms said “You know, when I come here, I think I have it so bad, then I hear the stories of others and realize it’s not so bad.” Now, maybe I’m reading into it too much, but I was the parent who had just shared some of my son’s issues, so I felt slightly, um, uncomfortable. For lack of a better word. She has two kids on the spectrum, I believe. And some other issues at home that she shared. I had just been sharing my son’s vision problems because today’s workshop was “Related Services.”
Here’s the thing–I love my life. No, seriously. I do. I love my family, I love our home. I have a nice circle of friends with whom I share common interests. I love my big, messy, obnoxious dogs. I feel like I’m at an age where I’m more confident than ever and comfortable in my own skin. I’m extremely excited and enthusiastic about new opportunities that have been recently presented to me, as far as career options. Ok, so I have a son with special needs.
Given the choice, I suppose I would choose the option that he were “normal” but I don’t have that choice. And honestly, the main reason I would choose for him to not have his chromosome disorder is for the potential health problems and shortened life span that accompanies it. But as far as his core personality and who he is, he really is a spectacular little guy. I’m not just saying that–he really makes an impression on people. Lucky for us, he is physically very strong and has no health issues other than his developmental challenges. He’s not ‘medically fragile’ or ‘medically complex.’ And he’s really a lot of fun to have around, as is my other son. So this is why it makes me feel uncomfortable when someone says that they feel better about their own situation after hearing about mine. Because I too have heard others’ stories and felt better about my situation.
It’s hard not to compare when our kids are wearing the same labels. It’s great to learn new things and hear information about programs and services you may find useful. It’s just very easy to slip into the “If onlys” and think that you could be doing better for your child. I used it as a big wake-up call, as far as describing my child by his most significant shortcomings.
I used to have another blog about living frugally and am a moderator on a large coupon website and have friends from that. Recently, several of us were having a discussion and one mom was lamenting about another family that seems to have it all–big house, nice cars, European vacations, you name it. My friend who owns the website, and has two kids of her own on the spectrum said,
“Hey, there’s always going to be someone out there who is better off than you,
and someone who is worse off. Don’t let it get to you.”
The same holds true in the special needs community. We need to share stories. We need to learn from each other. Sometimes, we just need to vent or commiserate with others who get it. Use the information for the problem-solving value or as a way to not feel so alone in your struggles. But we’ve got to stop using this information as a way of making a mental measurement as to how our kids or our families are measuring up. The older I get, the more I realize that I have yet to meet a family that isn’t dealing with struggles of some kind. Some struggles are just more visible.
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