Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Monday, November 17, 2008

Bringing My Son Home

I don't know about other parents out there. I have heard the real horror stories about trying to get a good education for children with learning disabilities, ADHD, autism, etc. In public school, it more often than not, is a fight to get proper accommodations and placement. Children with medical issues go through some of the same thing, especially, if there disorder or disease can affect them neurologically.

Well, we are not a horror story, but my youngest son is not making it. School increasingly becomes a place where he is not succeeding. Dysautonomia, chronic fatigue, pains in his joints and muscles, gastro pain and cramps, etc., etc. makes it a battleground at best.

I never wanted him to go to the brick and mortar school in the first place and now, getting him back into Home and Hospital has become nothing short of a fight. He hates being there. I hate him being there. It is almost palatable. But, he wanted to try and now he almost wishes he didn't.

Anyway, long story short, since he was already part of a 504 plan, in order to go into Home and Hospital, we had to have a SST meeting. That basically means, people you don't know, who don't know you well, "help" you decide what you should do. Even though you have already made up your mind and have the medical forms already filled out.

To give them the benefit, they are trying to make sure you know what ramifications your decision has. Since we live in "take one day at a time" mode right now, it is a moot point. I do not know what my son will do later in life. I don't know if he can make it in a magnet program. We don't even know why or how he gets sick, for goodness sake!

I stuck to my guns and tried not to lose my temper (which has been getting easier to do as I get older) while everyone stares at you. Then they tell me that every 60 days, I have to do the same thing over and over again. Thank you! I just want to see you every 2 months.

No bother. I figure I can bring videos of other dys/POTS sufferers. I can get audio tapes of other children and how they feel about school and how it doesn't work for them. Perhaps, we can watch a movie. Either way, he is staying in the program. If he has to do this through high school, he will.

Tomorrow, I will post the letter I wrote that put that final nail in the coffin for me. Life has to move on and so does my son's education.

See you tomorrow.