With joy we realized Saturday that what that we were seeing the Billy Ray, not just from a year ago before he had his most major health crisis but glimpses of his higher functioning before the seizures which changed him so completely at 14 years old.
I haven’t shared as much about what life was like before that. This is probably because the present, or at least the recent past, becomes so consuming it is like a separate life. It has been touched on in Reflections on How Far We’ve Come .
Billy Ray could go with the flow most of the time as a young child. He became hyperactive young but overall was able to do many things independently and didn’t require the structure he needs today. For example, his before school activity might look like this:
- Wake him up with the help of the dog because he was hard to wake up.
- Tioleting, independently except that he would call me if he had a bowel movement to wipe him. He was able to wash his hands by himself but would sometimes fail to get them totally dry.
- Hygiene required minimal assistance with his teeth but he washed face, put on deodorant, etc. without help.
- Give him a snack with his pills. He would eat breakfast at school but needed something with his medications.
- He would select his clothes and dress independently. I would be sitting at the dressing table in my room across from his getting ready for work. He would come to be buttoned or have his shoes tied which he has never been able to do.
- He made his bed and feed his dogs with little coaching.
- He gathered backpack by the door and put his coat on.
- If he were ready before bus time, he would watch cartoons for a few minutes.
Today, at 23 years old, he is no longer in school and requires a lot more assistance in most steps of his acitivities. We need to use a lot of visuals for him to understand what is expected of him and follow the same sequence as consistently as possible. We use a picture schedule and symbols. I tried to upload one into this post but can't figure out how to do that on Blogger. I managed to get the pictures and text columns on my website so you can see a sample of what we do. It is not the form because the website wouldn't let me upload tables or spreadsheets which I normally use.
You can clearly see the difference between the Billy Ray of those days and now.
After the seizures, the developmental pediatrician told us that most kids return to what was normal for them before the seizures within about six months. It had been nearly 10 years and he hasn't returned to the level he once was. He is showing signs of trying which is great.
I am comparing notes for you as well as myself because of the things we are starting to see but also because I am a bit worried about a decision we just made. The Depakote was used for years as a mood stabilizer and worked well but as I have reported recently he had to come off of it because it caused pancreatitis and diabetes. It was replaced with Trileptical which has now made his white blood count danagerous low.
Billy Ray does not have a seizure disorder but meds for his behavior can lower his threshold for seizures and that is always a risk. Since he needed to have a mood stabilizer I always felt safer if one of the seizure meds was used for that. We have nearly run out of choices except one that has side effects which we know he is prone to and are just as scarey too. We have decided to take the risk of a seizure rather than the risks with that drug. The drug he takes for his behavior (not the same one believed to have caused his prior seizure) does list seizures as a risk but all the doctors we have talked to say they have never heard of anyone having a seizure from it.
I have been stalling on getting him off the Trileptical but his white blood count is dangerously low again so we are going to have to get him off of it faster. It is again time to trust our instincts and do make best decisions we can with the information we have available.