...Has Cerebral Palsy
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by Emily Coleman on 9/1/2011 11:23:55 PM
When I began writing this blog there was so much about Eddie we didn’t know that it seemed so appropriate to title it “Raising a Child Who is Blind and…”. With him, there is a surprise lurking around every corner. I had mentioned previously that he had an orthopedic impairment that we were going to have looked into; that research turned into a new label “cerebral palsy.”
This “label” was suggested by a specialist who spent a grand total of twenty-five minutes with Eddie. Isn’t it amazing how one person, playing such a small role, can make such a large impact? My husband, who actually took Eddie to the appointment, broke the news to me. The first thing I did was mentally flash forward to Eddie as an adult and what that might look like. I saw Eddie in his twenties, in a worst case scenario vision. That lasted five seconds, and then I was luckily transported back to reality.
Reality is that Eddie is the same kid he was before a new diagnosis was thrown in the mix. Honestly, being somewhat familiar with Cerebral Palsy, this label doesn’t give us any new information. The characteristics indicated by this are ones we already knew about Eddie. This is all wrapped around the same diagnosis he’s had all his life. So, he has a new label… but nothing has changed. I mean that. He is the same kid no matter what is in his medical file and maybe it will be a piece of information we can use for better services, or proper methods, but it doesn’t change Eddie.
This peace of mind comes from years of having a child full of surprises. I take it as it comes and sort out the details later. Do I like the fact that someone diagnosed him with minimal information and minimal time with him? Absolutely not. However, if after discussing this with doctors that have known him longer and they concur, I’m not going to wallow in self-pity.
His Dad and I are going to work harder with Eddie to overcome possible obstacles to his independence, but we’re not going to let this label be an excuse. We’re going to push Eddie just as hard tomorrow as we did today, because doing anything else would be a disservice to him. Now it’s time to move forward to the “getting-things-done” phase. Eddie needs a good physical therapist, and since we’ve just moved, my job will be to find him one. Here we go down yet another path…one unsteady step at a time.
There are currently 3 comments
Re: ...Has Cerebral PalsyPosted by mom of 2 js on 9/7/2011 10:58:45 PM
You and Eddie are so lucky to have a strong partner and dad. It's very hard w/Joey because his dad doesn't want anything to do with him now that he's blind. He has Kleinfelter's syndrom and his dad avoid him rather than play or talk to him. You are very fortunate.
Re: ...Has Cerebral PalsyPosted by MLindbergfl on 9/7/2011 11:23:13 PM
One thing I have come to realize though is sometimes those doctors that don't really know our child and the background are sometimes the one who can catch things the other docs have grown accustomed too. That is part of how we found out that our daughter even had vision issues.... what one doctor claimed was normal variance the other doc caught.... if they hadn't, our daughter would have a loy less vision today.
Re: ...Has Cerebral PalsyPosted by Anon123 on 12/30/2011 3:37:54 PM
I relate to this post. My grandson is blind and has "SOD" but no one really knows exactly what that means for HIM. We can observe that he shares many behaviors with the autistic children in his special needs class. We can observe that every single thing has been a struggle to learn but that there are many moments interspersed along the way where we see brilliance. No one knows what to expect and doctors don't have time to even spend on it. That means that other than for medical issues, it is all up to teachers and family, and the path is exactly what others here have described, a daily discovery mode, a daily try this and see if it helps, etc. Doctors are phenomenally unhelpful but I blame that on the health care status in American where the HMO model is high case load and absolutely no time to spend remembering a patient's history let alone working with them.
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