Normal

Oh the joys and sorrows of having a child that looks and acts "normal" the majority of the time...

A couple of weeks ago, Cole had his evaluation for pre-school. He turns three in January and the services from Early Intervention end at that time. I brought an advocate with me since the pre-evaluation meeting had the underlying message of, "he won't qualify". This has been a long road for us, teaching him skills (including talking) and watching him progress with hard work. Apparently I worked too hard. All of the effort everyday bouncing on yoga balls, doing puzzles, reading books and other 'normal' activities have made Cole 'normal' according to the school district. Um, did you know that a few months ago, he could not sit still for a single book? 10 months ago, he couldn't talk, let alone say, 'How are you doing?" and shake your hand. Did you know that Cole could not match or even do simple puzzles until about 4 weeks ago. Because I worked with him every day! So, now, he can do them. It could change tomorrow. A regular pre-school will not take Cole because of his seizures. Remember that the window to maximize cognition for Dravet kids is small. They usually plateau around age 4 or 5. Kindergarten is too late to start school. I can't afford a private, special-needs pre-school. It's around $3,000 a month. So, this was a BIG day. I had been preparing for weeks.

Cole was his usual, charming self in a room full of new ladies. He wanted their attention, (duh) so he was more than happy to play games with them and answer questions. Even though he had a poor attention span and scored in the 20th percentile on two tests, he's just so cute and polite!! He doesn't need special education! He scored in the 4th percentile for adaptive skills. No, Cole doesn't make small purchases. No, Cole does not dress himself. Not a lot of three year olds do. BUT he also does not know not to touch a hot stove or put a fork in an electrical outlet. He doesn't know how to stay on the sidewalk or to pick up trash at the playground. He does not know his ABC's, can not count to 20 (or 3), can not tell me if he's angry or hungry, cut food, or stay with a single activity for 5 minutes without distraction. He can not use scissors, catch a ball, he can not calm himself down, etc etc etc etc etc etc. Why do you think he scored in the 4%? The administrator said that because he was in a new environment, his scores were lower than they could have been. She has every belief that he would have tested in the "normal" range if we had done these tests at home. How do you go from 4% to normal just by changing the environment? She then said that he scored so poorly on the adaptive because of the things that he was not allowed to do, so that made it hard to score. Um, do you want me to make him have seizures? He can not do some of the things the test was asking, because "allowing" it will result in a seizure. A few things were like that, such as going to the park and playing on playground equipment. She stated that special education would not change him. Cole will have continue to have seizures and pre-school won't change that. Yes, yes I understand that. I'm not looking for you to cure him, I want you to teach him!

I was getting pretty upset by this time. The nurse then started treating me like I had no idea what I was doing and asked to "tell me everything" but then really didn't want so much information. I started to tell her about the diet and she just moved on. I know how to keep my cool, and did so while I was in the room. I didn't mention that I used to attend IEP meetings at least once a month for my job. I know all about them. They had made up their minds. Cole was "too good". They said if he has a dramatic loss of skills, they would re-evaluate him. Does anyone believe in prevention? If he loses something, it's probably not coming back.

I convinced the school district to let us have a "test". Cole is going to go to pre-school for two full weeks, and we'll see if anything changes. I know they are just doing this because I had someone from the EAU there, who is a retired special educator. These people have made up their minds that Cole does not need services. In the two hours he was with them, he had just a handful of absence seizures. Not even noticeable unless you were looking him in the face. We face this issue almost every day. He walks and talks, looks normal, what's wrong with him? Do I wish that Cole was in a wheelchair, or couldn't talk....NO! I hate to say it, but it sure would make this fight easier. Epilepsy is so misunderstood. Our district is new, since they split from the larger district only a year ago. They do not have an "in between" program yet. Nothing in the middle from severe special needs to regular mainstream school. "Give us five years", they said! Two districts over, a friend of ours is getting a one-on-one aide for pre-school. Moving has never looked so good.

"He is adorable", was their parting comment.

I wish they could have seen the seizure when we got home. 2 hours outside of the house, totally expected it. We got it on video to show the dog trainers. I wonder if the school district would consider him to have "special needs" if this happened when we were at the eval. So here we are, in that awkward situation again (like EEGs) where we hope he has seizures. So strange. Kind of twisted. I hope he shows his true colors.

Off my soapbox. Whew!