Thursday, January 12, 2012

The right to be upset

Disclaimer: This is more of a quick vent than a normal post. This past week I’ve been mad and just distressed at what is going on with him and I hope that the ones of you who have kids with a seizure disorder along with autism can understand.

This week has been challenging to say the least. This week we have seen an increase in Alvin’s seizure activity and it has been hard on all of us.

It started Sunday night when he was trying to go to bed. He was upset more than usual and we couldn’t figure out why. I went into his room to lay down with him and I noticed what was going on. He was having a seizure episode. His face was twitching and there was a lot of involuntary movement in his eyes and overall face. It was heartbreaking to watch and for the first time that I think he was aware that something was going on. After laying with him for a little bit things died down and he was finally was able to rest.

The next day during music therapy he has a drop and then again on Wednesday during dinner it happened yet again and caused him to spill some of his dinner all over him and stress him out.

For a while he had so few of these episodes that we honestly could forget that he even had this issue. The seizures are one of the things that drive me nuts and stress me out.

When the seizure disorder was diagnosed we had a choice to make we could put him on medication and deal with the side effects or wait it out until he grows out of them. The type of seizure he has is very hard to treat and most kids out grow them by the time they turn 7 or 8. So because the seizures are so erratic we chose to do nothing with medication at this time which was also the recommendation of his pediatrician in Alabama and his one here in Washington.

This week I just got mad at it all. I hate that he has started to realize things are going on and it scares him. He is starting to notice the drops more and has started to come to us for help. I was hoping he would remain immune to what was going on for a little while longer.

So while this week has still given us steps in the right direction with music and gymnastics and the steady improvements I think sometimes I think we need to let ourselves be upset at some of the things we have to deal with which is why I ended up writing this post.

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