Monday, August 23, 2010

Riding the Short Bus


A long time ago, when I was in school, I remember other kids saying things like "That kid is so (insert derogatory adjective), he rides the short bus." or "I bet he/she rides the short bus."  Since I grew up in a very small town, there were many of us who rode a short bus to school or to athletic events, but I knew that there was something no so great about "riding the short bus" when used in that context and that is was said in a mean-spirited way.  However, I wasn't exactly sure why people associated mental or physical disabilities with a bus size.

Well, now that I'm grown up, my daughter rides the short bus.  My daughter has a disability.  She has to have someone help her on and off the bus.  Every other child on the bus also has some type of disability (physical or otherwise).  It makes me wonder if my daughter will now be made fun of because she really does ride the short bus.  I think I hate the short bus, but I love the kids who ride it.

Tuesday, August 17, 2010

She's Not Normal

"You know, I think you should just treat her like a normal child." is said

"Well, I'm sure you're right. I really try to do that." is the reply.

BUT...what I really want to say is...

"So, you think I should treat my child with cerebral palsy like a normal child, because your experience with three "typical" children gives you enough knowledge to be an expert in the area of special needs. If she was a normal child then, we wouldn't have therapy four times a week and praying we can pay for it all. Instead we would have soccer, baseball and ballet to worry about. If she was normal, I wouldn't still be trying to potty train my 5 year old child and have boxes of pull-ups in the closet. If she was normal, I wouldn't be spending time and a lot of money to get the cutest shoes I can find, that will fit over AFOs. If she was normal, we wouldn't be spending time looking for just the right color for the wheelchair so that maybe her friends might think it is just a little bit cool and not just weird. If she was normal, my back wouldn't ache all the time because I wouldn't have to lift her and hold her and try to position her so that she can have a semi-normal experience with her siblings and peers. If she was normal, maybe you would treat her that way."

Thanks! I needed that!

Thursday, August 12, 2010

Helpless


Yesterday we (the trips and I) went to the Dallas World Aquarium with some friends. If you haven't been, it is really worth the trip. I bit expensive for my taste but really well done.

As we started walking through the exhibits, I noticed Grace wasn't herself. This was our first outing in her new wheelchair. She wasn't talking, pointing or even really looking around at the animals. I tried to direct her attention and asked lots of questions but there was just no interest...her eyes just weren't shining like they always are. I started becoming concerned...Is she sick? Is she sad? Is the wheelchair uncomfortable? In the meantime, Sophia, Mack and our friend Matthew were jumping up and down with so much excited about the animals we were seeing.

I pulled her aside from the excitement and tried to talk with her. "Grace are you okay? What is wrong?" Her only reply was "Hold me." So I took her out of the wheelchair and she began sobbing. Big tears...big sobs. I was so confused. "I want to go home" she said. I was at a loss. Does she realize how different she is? Does the wheelchair make it that much more evident to her? It was all I could do to not start sobbing myself. I was helpless.