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Wednesday, January 9, 2008

The Oldest

So..Christopher, my stepson, currently 14, was born with Cerebral Palsy. He was premature and is lucky to be alive today! All 4 limbs are affected and he is also mildly mentally retarded.

When I married his dad, he was going to Speech, Occupational and Physical Therapy 1x a week each and also had it in school. He had already had an eye surgery and a few leg surgeries (these are common for kids with CP)

He was able to manuever around in a walker, wore leg braces and had a wheelchair for longer trips. When he was younger it really wasn't that hard....we could pick him up, move him around, help him in the car...the wheelchair wasn't too huge, although we did need a lot of storage space between wheelchair, walker and stroller for the baby!

For a couple of years my friends remember me as "crazy"...pushing around a wheelchair and a stroller, with 2 other littles hanging on! Grocery shopping was fun, let me tell you!

Thankfully, they get older...the 2 littles got bigger and would take turns pushing the wheelchair or stroller.

With Christopher I got a crash course in IEPs and rights of students, and real up close and personal with various advocates and compliance officers for the school district.

When I first came into his life, he was in a self-contained classroom and was by FAR the MOST able. So, we eventually fought to get him out of there. Of course, out of there, means INTO somewhere else..and they weren't really equipped for him in regular ed either.

After a run in with a pair of scissors (who gives a spastic kid scissors?!?!) we started fighting for an aid. He needed to be in the most appropriate educational setting (as he wasn't homeschooled).

By the time he finished in elementary school, he had a part time aid, they had made an extra handicapped spot with a slanted curb for him to unload and get into school, and the IEP was fairly satisfactory. But then he had to move on to middle school!

In middle school, he was only there for a few months prior to a scheduled "routine" surgery.

That "routine" surgery left his legs mangled and with no feeling (well, except excruciating pain for the first few months...the ghost pain they talk about with amputees...NOT FUN!)

At that point, Christopher's grandmom moved here with his mom to be his full time aid. It wasn't so easy to lift him anymore, or maneuver him,even toileting was a problem. He couldn't bare weight, or even help get himself up and down, his legs wouldn't work at all.

3 yrs later,and Christopher now lives in Kansas with his mom and grandmom, sharing duties of his care....which is 24 hrs! He does go to school, but needs a lot of attention and care, therapies, and someone to sleep with every night due to nightmares. Hats off to mom and grandmom for really being there, through it all!

I learned a whole lot with many things.. I can't even catalog them all!

1) They need to have a mom with a kid in a wheelchair design WHERE the elevators are
2) public places need MORE and BETTER automatic doors
3) People should treat ALL my kids nicely (Can't tell you how many times JUST Christopher would get a balloon, or extra candy...hello! There were 2 more little kids looking on with jealousy!)
4) If you don't stand up for your kid, noone else is going to
5) Educate yourself on everything, IEPs, laws, medical advice
6) Be upfront about your kid friendly terms we try to explain why his legs don't work, etc.

Well, this is a brief writeup of child #1, on to the next one!

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