3 replies to this topic

[concernedmom]

My son has had N for 5 years, he is now a freshman in high school. Up until now, homework was time consuming but doable. This semester, his grades have dropped and he is completely overwhelmed by incomplete classwork and homework. His previous school was wonderful, and so is his high school. When I went to pick up his report card, I expredded my concern and they puched up his 504 review. They also said I should have come sooner. Accommodations that were discussed informally so far have been less Algebra homework, no points taken off for late homework, gym last period (swim exhausts him, he could have gotten out of swim but he didn't want to), notes from power points - but he needs to ask for them to be emailed to him.

My concern is I think the N is affecting his concentration during school. He has always been a smart kid, but now he always seems confused - doesn't know what the assignment was, how to do anything (it almost seems like he doesn't remember class). However he can not put it into words, he says he does not fall asleep, but I find that hard to believe. Since he was 10 when he was diag., I think he only remembers having N, he does not know what it is like not to have N, so he doesn't know what is different.

I am looking for someone to explain to me how N affects memory and concentration. I want to be able to explain it at the meeting and know what to ask for. I get the feeling the school will accommodatehim if we know what to ask for.

[malachi777]

My son has had N for 5 years, he is now a freshman in high school. Up until now, homework was time consuming but doable. This semester, his grades have dropped and he is completely overwhelmed by incomplete classwork and homework. His previous school was wonderful, and so is his high school. When I went to pick up his report card, I expredded my concern and they puched up his 504 review. They also said I should have come sooner. Accommodations that were discussed informally so far have been less Algebra homework, no points taken off for late homework, gym last period (swim exhausts him, he could have gotten out of swim but he didn't want to), notes from power points - but he needs to ask for them to be emailed to him.

My concern is I think the N is affecting his concentration during school. He has always been a smart kid, but now he always seems confused - doesn't know what the assignment was, how to do anything (it almost seems like he doesn't remember class). However he can not put it into words, he says he does not fall asleep, but I find that hard to believe. Since he was 10 when he was diag., I think he only remembers having N, he does not know what it is like not to have N, so he doesn't know what is different.

I am looking for someone to explain to me how N affects memory and concentration. I want to be able to explain it at the meeting and know what to ask for. I get the feeling the school will accommodatehim if we know what to ask for.

First, I am happy to see that you are concerned for your child and his education. Second, you concerns are valid concerning his memory and concentration. With narcolepsy, even if he isn't having a sleeping spell, we have serious issues with memory and concentration. For example, every single day at work, while writing my codes for the time card, I always forget to hit the clock too. I received three warnings from my manager in one week. In fact, today after leaving work, I had to turn my car around and go back to my job to make sure I did clock out. I did. Does your son take medication for the narcolepsy? If not, I would get him on it soon. My nephew also has narcolepsy and his grades dropped drastically last year and my sister took him for tests to see what was wrong. When they diagnosed him, he went back up to honor roll.

Your son will begin having severe mood swings, likely slurring as if he is drunk, will stop mid-sentence and forget simple words for moments at a time. I feel for him because I I go through these frustrations too. I noticed that if I take a daily nap, the symptoms are minimized drastically. Have him take strict sleep schedules during the day to trick the brain. Good luck... Mike

[amazingracie28]

My son has had N for 5 years, he is now a freshman in high school. Up until now, homework was time consuming but doable. This semester, his grades have dropped and he is completely overwhelmed by incomplete classwork and homework. His previous school was wonderful, and so is his high school. When I went to pick up his report card, I expredded my concern and they puched up his 504 review. They also said I should have come sooner. Accommodations that were discussed informally so far have been less Algebra homework, no points taken off for late homework, gym last period (swim exhausts him, he could have gotten out of swim but he didn't want to), notes from power points - but he needs to ask for them to be emailed to him.

My concern is I think the N is affecting his concentration during school. He has always been a smart kid, but now he always seems confused - doesn't know what the assignment was, how to do anything (it almost seems like he doesn't remember class). However he can not put it into words, he says he does not fall asleep, but I find that hard to believe. Since he was 10 when he was diag., I think he only remembers having N, he does not know what it is like not to have N, so he doesn't know what is different.

I am looking for someone to explain to me how N affects memory and concentration. I want to be able to explain it at the meeting and know what to ask for. I get the feeling the school will accommodatehim if we know what to ask for.

Hi Concernedmom,

The memory and concentration thing is by far one of the worst symptoms of N IMHO. For example, I have always done extremely well in school but now I routinely have days where I'll get stuck on really simple words. It drives me insane-I know that I do know the word and the proper spelling but I can't get my brain to recall it. I came up with a couple tricks that worked for me-maybe they could be useful to you as well? I always had a big problem with focusing on or retaining any sort of reading assignments and would often have to reread a passage several times before I could tell you what I'd just read. The best way I found to fix that one was to either record the lectures/classes or dictate reading assignments into a recorder. That way I could just listen to the material when I was most awake, or listen to it over and over until I could more or less recite it . Note cards also work well for breaking up a lot of material into bite sized pieces. I would always write out a question or two per note card which made it less overwhelming and also allowed me to pull out the cards that I needed more help on. There's also a neat little gadget called a Livescribe pen, but its pretty expensive. It records everything being said while you write, so if you can't follow your notes later on the pen will tell you what was being said in the lecture while you wrote that particular section of notes. I don't know how well it works, but just thought I'd throw that out there.

Of course it doesn't help if he also has teachers who aren't very energetic and put the "normal" kids to sleep with their lectures....how do you expect a PWN to stay alert?

Its so fantastic that you're an involved parent. Your son will definitely need a lot of encouragement-the memory and concentrations problems have a tendency to make one feel pretty stupid (even though that's not accurate). That's just my take on it anyway.

Hang in there and I hope you can find some things that make life easier for your son!

Amazingracie28

[merrymom1013]

Always nice to talk with another mom! I've tried to explain the concentration issues to teachers as very similar to inattentive type ADHD because of fluctuating levels of alertness. Some things that can help: a cooler room (my kids high school was not air conditioned & the stifling hot rooms could put the awake kids to sleep), a bottle of water, energy bars or snacks (some high school's have kids eating lunch at 10 am!), being able to stand up & move a bit if getting too sleepy, in addition to the other great suggestions. Another thing to consider is scheduling of finals. If a large portion of his grades will be from midterms & finals, he may need extra time & to only take 1 exam a day, or some other scheduling change.
Also keep in mind, since your son is a high school freshman, that puberty/ early adolescence can play havoc with finding the right medication and dose. My daughter's sleep doctor gave us that warning when she was 11. Sure enough, age 12 to about 14 1/2 were pretty tough. (And boys tend to have that rapid growth a bit later.) Her doctor explained that their brains are changing as much as the rest of their bodies. So, if your son is on medication, his needs may be frequently changing. If he did fine without medication before, he may need it now. It's also a time when most kids need to sleep more, but are sleeping less. And again, that's "normal" kids. He may need to nap during school or before homework.
My daughter found adderall helped her with the focus & attention; provigil didn't. Again, everyone's different. Her doctor was good about letting her try some different options over time & have input into what worked best for her.
The good news for our kids is that they have their high school years to figure out what accommodations they need & to learn how to manage with our support before they go off to college & have to be their own advocates.