Quote From: mustbecrazyOur oldest son, age 18, has Narcolepsy, and he is on Provigil.
Narcolepsy is a sleep disorder that interferes with a person's ability to function. Your son IS eligible for an IEP, and you need to make sure that he is getting what he needs. It is illegal for the school NOT to set up an IEP for your son. Since your son already has a diagnosis of Narcolepsy, there already IS a PAPER TRAIL in his medical records. It sounds like the school is making excuses instead of finding ways to help your son.
Before you set up the IEP, go to school with your son for a week to get a feel for what the teachers are like and what their expectations are. Just be a quiet observer in the back of the room. Write down any problem areas that you see. Going to school yourself will go a long way in getting cooperation from the teachers and counselor and principal. After you have your list compiled, set an appointment with the school counselor and his teachers to set a plan that will help your son...that is the goal.
Both of our older kids have IEPs for ADHD. We had to fight for years for the school to give us any accomodations. It got worse in junior high, when our boys went from one teacher to six.
About driving, if your son is taking his meds and getting enough sleep, he shouldn't fall asleep at the wheel. Hopefully, he will stay away from drugs and alcohol...be sure to talk with him about this, as alcohol will make the effects of Narcolepsy just that much worse.
the IEP we have for our 14 year old son really gives him nothing. We are hoping to get things like preprinted notes and having tests read to him. We also hope we can change his required number of books read each quarter to reading for a set amount of time each day. Quiet activities like reading is difficult for him. And having a test read to him allows him to interact with someone...thus keeping him alert. Also if getting notes allows him to put more focus on what is being said then on writing down notes. Focus is where he struggles the most with currently because often it takes a great deal of focus to stay alert and awake.
His provigil has made a signifcant change for him. Without it I am sure he would not be as alert as he is and probably suffering even more at school. He is a very good athlete and we tend to find the more activity he has...the more alert he is.
I am not sure how common it is for children to have narcolepsy but we did find it very difficult to find a doctor that works with children with sleep disorders. We did luckily find one.
I believe he has suffered with this for most of his life as he has never been a very good sleeper during the night and has always had the ability to fall asleep at the drop of a hat.
I will talk to him about about drugs and alcohol and how it effects narcoplepsy. This is new knowledge for me. We are concerned that the provigil medications would not interact with other drugs and alcohol too well. And so those discussions have already taken place. We also talk to him about staying free from those things because he wants to participate in sports in high school (and hopefully beyond).
