Did you know that I have a child with a disability?
At least I think I do. I'm not really actually totally sure.
Here's the lowdown. Little Bit, our 6 year old daughter, was diagnosed with Tourette Syndrome at the age of 4. I'm listening to her tic right now. Only it sounds like a cough. It's been going on for a week or 2 now but only when she's awake and mostly when she's in bed. Don't worry, that tic will soon be replaced with another. And another.
Because we were already homeschooling when we found out about her TS, I haven't had to deal with a lot of things like 504 accommodations and I haven't had to learn much about ADA and IDEA and all the other strings of letters there are to learn about.
I do know that in some cases, TS is considered a disability. But those people have a much worse case of TS than my daughter. Hers really isn't all that bad most of the time. I think. Compared to others? Wait. I don't know any others.
We have good friends whose son has autism. Hang on. Do I say he HAS autism like it's some kind of disease? We have good friends whose son is autistic. Wait. Do I say he IS autistic, as if that's the main descriptor of his life? See? A mom whose child had a disability would know these things. Anyway, shortly after Little Bit's diagnosis, my friend sent us some information on a "special needs day" at a local event. It seems we could get in for free to this event. She wondered if I was interested in getting these e-mails, as she is the president of the local autism chapter and is privy to this kind of information.
I told her yes, absolutely. Free is good. But I've never been to one of the events. (They aren't just for kids with autism, but all special needs) One reason we've never been is because.....I would feel like an impostor.
My child doesn't LOOK like she has any sort of disability. Would people be looking at our family trying to figure out which one of us was the disabled one? Would she wonder why she was there with all these other children who have special needs? She doesn't know she has special needs. (Does she? I mean, physically she's fine.) Actually, in light of the other types of disabilities that would probably be represented there....she just doesn't seem to fit in.
I don't fit in. I don't really feel a part of this world of disabilities.
When it comes to moms of kiddos with disabilities, I'm like a freshman at senior prom.
And yet....it's not all "normal" around here. We are dealing with something. But everyone has something, right? My older daughter had asthma. That was a lot to deal with. Maybe even more than we've dealt with tics. The tics don't get me up in the night to give them breathing treatments.
The thing is.....there's a scale of some sort when it comes to this stuff. Or so it seems. If you have a child who cannot walk, talk, feed themselves, etc. then you are dealing with big things. You definitely have a child with disabilities. If you have a child who has seizures or learning disabilities or physical challenges......these things QUALIFY you in my mind as a mom of a child with disabilities. I admire you. I cannot imagine walking in your shoes. I see what all my friend deals with.
Am I really a part of this world?
I have trouble with that.
And yet, I need to know. I don't want my child to be discriminated against when she is older and I am not there to stand up for her. I've read Brad Cohen's book. It happens. So I guess I need to educate myself about laws and find out how or if this all applies to my daughter.
So I'm pushing the door open a little and placing one foot inside. I hope I'm welcome here and that no one sees me as an outsider who doesn't belong. It's for my daughter that I'm coming in here, you understand. Gosh, I hope my dress is OK and I don't look like a dork in front of all these seniors.