When I was at a play group with Abby and my son, an educator asked me if they’ve given Abby a label yet… God was with me that day and I said, “Labels are for soup cans.” And I scooped up my children and I cried all the way home. I never spoke to the educator again. I was like, “A label?”
Most of the time with little children, I will stop and say, “Her name is Rebecca. You want to say hi to her? It’s OK. You can say hi to Rebecca. She can talk a little bit.” And then if the kid does, we will teach them to sign. Like, show a sign for shopping or home or McDonald’s or whatever.
She really understands everything
I’ll never forget one time she was playing T ball. A woman actually went out to right field and started asking questions about Sarah’s disability in the middle of the game. You should have seen Sarah’s face she really understands everything. And the person that was with her was actually answering the questions, which really bothered me.
That’s how children learn
There have been times when we’ve been in public and of course people will look. Children will look, and kids come up and ask questions, and their parents go “Shh shh!” and we tell them, “No, that’s okay. That’s how children learn. Allow her to ask the question. She doesn’t walk because she has cerebral palsy.” We just explain it to them, which I think is important because a lot of people aren’t aware of what CP or any other condition is because you don’t really know what it’s like until you live it or you know someone who’s going through it. Like I said, we’ve had some experiences with people who will kind of look down at us or make faces, but it’s more so from adults than children. How I personally deal with the situation is that I allow them to see Kayla for who she is, and if I have to be that middle person, which many times I do, then that’s what we do.
Somebody pulled up next to me as I was getting out of the car and asked, “Is it curable?” I was stunned and I was like, “No, she’s beautiful.” And then they drove off. People are obnoxious. So how do I deal with it? I don’t always know what to do. And no matter how many times it’s happened, I’m always shocked by it. I’m always stunned. But in my household guidelines, I tell the nurses what to say if this happens or I give them suggestions. I believe that people need to have an understanding about people with disabilities. I teach a disability awareness program through my school. So that’s when I educate people, not when I’m out having fun with my daughter.
I’m just not at a place to hang out with you
It all depends on how someone approaches her, believe it or not. She’s had people who have been real ignorant and rude, and she just basically won’t give them the time of day. Or if she has someone who she feels is genuinely being concerned and caring, she’ll explain it to them. And she’ll just say, “I need these braces to walk. I mean they help my legs. I have a hard time doing it by myself so these just help my legs so I can get around and do what I need to do.” Or there are times where kids are being very forceful and they are trying to demand an answer out of a situation and just being rude, and then Madison’s answer to that is, you know, “I’m just not at a place to hang out with you.” She just leaves it at that. She basically won’t give them the time of day. If you want to learn and be accepting, she is more willing to do it, but if she has someone who is being mean and she feels like she just is not going to win the situation over, she just removes herself from the situation. She’ll just say, “this person is just not willing to learn.”
The kids get it
It’s amazing what I found is that kids have no problem coming up to children like him and asking questions. It’s the adults that always back off or pull the kids away. So, we came up with a pretty cool thing. If the child was looking interested, I would ask the child, “Do you have any questions?” And they’d go, “Yeah, well why is he in that chair?” I came up with a simple solution which was that I’d go, “Well, the part of his brain that makes him walk is broken.” “Oh, well can they fix it?” I’d go, “Well, maybe someday, but not right now.” What’s really cool is that parents would ask their kids, “Do you understand?” And if the child said, “No,” they would try to understand or ask us to explain it more, or most kids would say, “Yeah, he’s just broken,” and I’d go “Yeah, he’s just broken.” They’d say, “Well, can he talk?” I’d go, “No, that part is broken too.” The kids get it. It’s the adults that have the problem.
We don’t elaborate
We don’t elaborate because I find that people only want to hear what they want to hear. And I can go on forever about Katie. So we find that we just answer to that particular question. For example, why is she in that chair? Because her muscles don’t work that great and you need your muscles to walk. You know, if I see a young kid staring at Katie, often I’ll say, “Hey Katie, I think that person wants to know your name. This is Katie. What’s your name?” And just try to draw them in and break them from that stare because I can’t imagine going through life with people staring at you. I think Katie must tune it out.
In general, I find that most people are very kind and supportive. Sometimes the kids that are younger will ask in insensitive question “Why does he walk funny?” But for the past few years, I go into his school and talk to the kids at his class and explain and answer questions. I think this helps everyone realize that this is not something to feel shameful about and if people have questions, not to be afraid to ask.
Your “reference point”
Sometimes you can take the moment as an educational opportunity. Or it can be very painful and very hurtful and they don’t know. And I think that it’s all a matter of your life experience and your “reference point” as I call it. And if people have never had a person with a disability at all in your life, than they have no reference point. So you can’t necessarily get angry or blame them for the stupid things that might come out of their mouth. And I’ve learned that over time.