Thursday, January 21, 2010

A World Where I Do Not Belong

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'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.


  1. I feel the same way, you know with Baby boy and his deafness. Has he been diagnosed as deaf in his left ear? Yes. Does he act like it sometimes? No.
    Does he still qualify as "deaf disabled" if he can hear perfectly out of his right ear?
    According to the State of Texas , yes.
    Does he speak? Well, kinda, sorta, maybe, sometimes.

    I feel ya on this one and hear ya. I feel like an intruder as well. I tell people he's deaf and they look at me like hey stup, didn't he just come when I called him? Then they try to get him to speak and he can't and then they go ohhh, okay, I see.
    Sometimes I don't know whether to tell people he's deaf or not, just so they won't treat him differently.

  2. OK see....according the the state of Texas. How do you know that? How does he qualify and how do you know that? And what does that even mean?

    I am so lost.

  3. As we researched for a therapist for Baby Boy we were told by Medicaid that the state of Texas only needs the Dr. to file a form with them plus the testing results showing a positive for deafness in order to qualify for assistance in certain medical testing and help. This is also what my aunt had to do for her son whom is autistic in order to get help with therapists and to be able to have him attend a certain school. They also get help with his medications this way.

  4. Hey there, I think you're doing the right thing. Getting your foot in the door and finding out how far you want to go with this is proactive.

    Waiting until she's out on her own, and most likely faced with others' ignorance would be painful for you and her.

    There's ALWAYS going to be someone who has it worse/more severe...don't let that deter you. Keep digging until you feel you've done the best you can do to figure it all out, and if the other moms make you feel like you don't belong, well then, I guess there's all forms of pettiness...I would hope people wouldn't act that way.

    And don't worry about your dress. Everyone else is probably so busy with their kids they haven't even noticed... :0)

  5. We are far too busy with our kids to worry about your dress! We are going through this right now. We just saw the pediatric neurologist to find out that not only is our oldest son probably autistic (he gets some tics with that) but that our second son also has some kind of speech development issues that may or may not be either just a delay that he needs help with, or not hearing right or whatever. But we were told that with one son with autism, it is likely the other boys will have some kind of learning disabilities too.

    My child acts autistic. People can tell there is something not quite right with him. He will be going to public school because we believe they will be able to help him the best. He needs help with speech, communication, social issues and motor skills. And that's just the beginning. We found out that our 18 month old boy should be able to say a few words by now, and he says nothing, just makes noises.

    I was going to post about this if I get time today, also. Hope you find the information you need, Brenda.

  6. i love this post. your writing style is awesome. and i am listening to my little one cough and "clear his throat" like crazy. i'm sure next week it will be back to blinking and blinking. can't wait for heaven! :)

  7. my 5 yr old has classic signs of Aspergers (mild autism, sorta), he is a bit off, quirky so to speak... so far, I have not the need to label him. I am his advocate, I research endlessly/age appropriately to equip myself and our family how to best guide our lil guy who will always drum just a beat differently than others. I do know we are part of THAT world =) but, just as you, we embrace it while we face it! Thanks for sharing...

  8. I'm so glad to have found your blog! I am also a homeschooling mama of a child with Tourette's. I can definitely relate to this post! I mostly feel like I do not have a right to call my child disabled when he is, for the most part, healthy. There are so many children worse off than he is. But sometimes I wish I could put a shirt on him that says "I Have Tourette's" (Is that terrible?) Then maybe people would recognize that he has a disability and not just bad behavior. I especially think this when he is intermittently screaming at the top of his lungs in the grocery store and everyone is staring. :)

  9. Sarah, nice to meet you too! Your profile isn't you have a blog? Feel free to e-mail anytime.


I don't get to talk to a lot of actual grown-ups during the day, so your comments make me really happy! :)