Yesterday I experianced something that I have experianced many times before, and that I will continue to experiance for the rest of my life. Many of you have shared this experiance as well. I went grocery shopping because it is one of my favorite things to do and it is one of my mom's least favorite things to do. I have 2 wheelchairs, crutches, and AFOs, but I do not use them most days, including yesterday. I left my cart at the end of the isle and walked towards the apples. A very little girl (small enough to still fit in the front of the shopping cart) was staring at me. I am in dire need of botox, so my walking even feels awkward to me--of course she was going to stare. Usually with little kids I smile, give a small wave, and say hi, but I was frazzled and didn't take the two seconds to do so. As I turned to walk back to my cart the little girl turned towards her mother and said at a normal volume "Why is she walking like that? Why does she walk like that?" I was a little ways away from them so I did not hear the answer; it was said at a wisper.
This brought to my attention a problem I have been having for awhile. I'm hopeing other disaboomers will be able to help me with it, I have been in school working towards being certified as a child life specialist. I will be working with children in who are in the hospital, helping with their psychosocial needs. It is almost impossible to become certified as a child life specialist without a plethera of volunteer hours. I have been volunteering for 2.5 years at different hospitals, depending where I am living at the time. There is an issue that I have been having that for some reason I have not addressed with either a supervisor or my advisor at school. By the time I would be able to speak with them, I've almost forgotten about it.
The hospital that I have done most of my volunteer hours at is a speciality hospital. They are a pediatric rehab hospital meaning that the inpatients I work with were either born with developmental disabilities and are there for intense therapy following "routine" orthopedic surgeries or were in accidents and were transfered there from shock trauma, also for intense therapy. There are other cases, but that's the gist of it. My problem is when these kids turn to me and ask me why I walk funny. At first I found it odd that any kid that was there would need to ask, but it's happened a lot, so I've gotten over that. Because of privacy laws I am not allowed to know why any of the kids are there, but once even a girl who very ovbiously has CP asked me why I was walking like that (I found that VERY odd). Somehow I was apprehensive about using the words cerebral palsy, as I was affraid it would be crossing a line or something, but then later regretted the choice. If you have an oppinion please share.
What I'm having a problem with is trying to come up with an appropriate answer without much of a pause. I don't want there to be a pause where the kid feels awkward and then feels ashamed about asking. I'd rather they ask then stare (people in general need to get that in their head-- staring is rude, asking politely is not). I've done A LOT of advocacy work over the last 7.5 years speaking to kids as young as 9 all the way up to professional groups where some were in their 60s. Bigger kids aren't a problem. But what about when a 3 or 4 year old asks me why I walk funny? I don't really have experiance with little kids. How much can they comprehend? If I simply say "I have cerebral palsy" they are going to look at me funny. I have tried "I was born this way/like this" and I feel like I am being too short with them, like I am not answering the question. My other problem is with patients with cognitive delays. Say they look 11 (or even 17) but have a cognitive age of 6. I feel like it's taking me too long to adjust for that in my head, comming back to the awkward pause.
I hope you all can help and am looking foward to receiving the replys to this post. Somehow I feel like I will get a better response from those who live this experiance daily, rather than those I work with who are only spectators into our lives.