Home Cerebral palsy Emily and Abby Abby's Story Contact Me

Monday, January 21, 2013

Good

My kids are off from school today and tomorrow, and because of our unexpected snow day, they ended up with 5 days.

I used to dread long breaks because it was so hard to take care of four little ones. Now that we have two at home, and they are older, we are actually learning to have some fun. We LOVED the snow.











Before the snow fell, Emily had a neurology appointment. Her seizures have been more stable than they have in years. She gained 3 1/2 pounds, which still leaves her at a peanut-sized 63 1/2 pounds. She feels heavy, but she'll be 15 in a week. She's still tiny, but healthy.

The cool news from that visit was that during her 2 day EEG, they looked at overall brain health. They measure the intelligence areas in the back of the brain. There's a 1-10 scale, and a normal person would be 8-10. Someone with a brain injury like Emily would expectedly fall in the 5-7 range or even lower. She said people with diabetes or Parkinson's even have lower numbers.

Emily's number was 8.5. That means if you didn't know she was a child in a wheelchair that couldn't talk, she would expect to see a typically intelligent child. Her brain activity in all higher thinking areas was consistent with that of her peers. In one single are of life, she's on an even field.

I know that number doesn't change who Emily is, but it feels amazing to get good news. I can't tell you how many times I've doubted myself for pushing so hard for education, and to keep her in general education. I wasn't sure she understood, but I knew in my heart that exposure to at least an elementary education couldn't hurt her. I had to fight tooth and nail for it, but learned as she did.

In Florida, if a child couldn't do everything a typical child does, and Emily's case, that includes written responses, they try to place them on a special needs track. There is nothing wrong with that, if it's an appropriate placement. Abby was on that track because her visual impairment made it very difficult for her. She understood as much as Emily did, but her disabilities made typical education something she wasn't as interested in. She was a hard worker, though, and learned too, just at a different pace. Emily liked a challenge, so we tried to keep her in the game. I personally believe that EVERY child should be stay in general education through elementary school, unless it is too difficult emotionally. So what if they don't retain what others do. You will never hurt them by trying, but we know that harm is done by not stimulating that developing little brain.

Now that we are in North Carolina, and don't have to fight so hard for everything, we are discovering that, like any child, she has strengths and weaknesses. She probably does have a ceiling to what she's able to process, but it is much higher than anyone in early education ever imagined. So every tear filled meaning I sat through, every call to an attorney I made, every letter I wrote, and moment I begged to have her included came rushing back to me in at neurologists office. Finally, someone else looked me in the eye and said what I knew. This child can and should learn.

I knew Emily was understanding, and I knew she was a much happier child outside of that awful Florida educational system, but sometimes a little outside validation is a wonderful thing to have.

They also looked at overall brain health, which was very important to me. Because there was a neurological component to Abby's illness, and her brain/body communication was disrupted, I worried about the same thing happening to Em. Nothing says it won't, but her overall brain health looked good on EEG.

It was good, good news. I've learned to always prepare for the worst, so hearing unexpected good things is wonderful. I am so thankful to God for this time. I've prayed for a period of easy for our family. We've endured 3 long years of difficult. How sweet it is to have a few days of "good".

When times are good, be happy;
but when times are bad, consider this:
God has made the one
as well as the other.
Therefore, no one can discover
anything about their future. Ecclesiastes 7:14 (niv)


post signature
 

2 comments:

  1. I am a few days behind in reading, but this is great news for late or on time, right?
    God Bless...
    Love from High Point

    ReplyDelete
  2. Thanks Sandy!
    Yes!! We LOVE great news!

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...