School accommodations for 16yo with narcolepy who needs to nap

[blessedwithboys]

Boy, it's been a rough couple of months!  My 8yo ds was diagnosed with Generalized Anxiety Disorder and Mood Disorder NOS and my 16yo ds was diagnosed with Ideopathic Hypersomnia which is really narcolepsy but the tech stopped the test early and missed the last REM sleep.  We'll re-do the test as soon as the insurance will pay for it, but for now we are trying to go with IH.

Because the dx is coded as IH, the insurance will not pay for the $500/mo narcolepsy medication.  We tried Adderall and it not only didn't keep him awake, it caused too many horrible side effects to stick with it longer than a few weeks.

While we are appealing the rx denial and waiting to redo the sleep test, we are trying to implement lifestyle modifications, including a brief daily nap.  Our PreK-12 charter school is usually pretty good about this stuff, but because ds is an honor roll student, they feel they he doesn't qualify for an IEP or 504 or whatever it's called.

However, as a courtesy, they offered to let him go to the PreK room at 12:30 for his nap.  I thanked them and told them that would be degrading and humiliating to a 10th grader.  They say they would like to offer him a private room, but the county prohibits any student from being alone in a room.

I found out that there is a tiny room right off fo the front office that he could use but they are refusing.

WWYD?  Is it worth fighting?  I would love to homeschool him but his father got a court order preventing me from doing that.  I can't even do virtual public school without his father's permission.  Ds and I hatched a plan to just have him get his GED and start online community college, but hsi father found out and flipped.  So, for now, he has to stay in school. 

TIA for any advice.   :)

[chiefmir]

your DS definately wouldn't qualify for an IEP based on what you said in your post, but he DEFINATELY qualifies for a 504 Service Plan.  That is related to the Americans with Disabilities Act (ADA) and not to IDEA (which is where and IEP/specially designed instruction come from).  A 504 is for a medical condition that impacts a child's ability to function... it is worded somewhat vaguely and is up to districts to interpret for themselves.  However, it covers individuals who meet the definition of qualified "handicapped" person -- for example, a child who has or has had a physical or mental impairment that substantially limits a major life activity or is regarded as handicapped by others. (Major life activities include: walking, seeing, hearing, speaking, breathing, learning, working, caring for oneself, and performing manual tasks.)  (I took the wording from another site).  A child does not have to be impaired in the area of learning to have a 504.  A child who needed accomodations due to visual or hearing impairment (like special technology or preferential seating) would have a 504.  A child who had diabetes and needed to be allowed to eat at certain times of the day, rest at certain times, or be allowed to do glucose checks at certain times (even if it was in the middle of a test or something) could have a 504, and it wouldn't matter at ALL if they were on honor roll-- totally unrelated to their needs.

As for your son, all he needs is a diagnosis that indicates that he is either considered "handicapped" (not my word) compared to others or that he is significantly impaired in a major life activity (I'd say staying conscious would count).  If they don't agree to a 504, and your son qualifies, they could lose any federal funding they get if it went to court.  As for the nap issue- can he go to the nurse's office?  Will he be driving to school soon?  if so, could he be allowed to nap in his car?

As for being a charter school (I work in one and DD goes to another) they have to follow ALL the same laws that relate to this issue as regular public schools do.

[stik]

Being on the honor roll has nothing to do with qualifying for a 504 or IEP. 

They are probably right about not being able to put a student in a room alone.  But a cot in a curtained-off area of the nurse's office should be fine. 

[spedteacher30]

he definitely would qualify for a medical treatment plan--but maybe not an IEP or 504. I would question having a 16 year old sleeping alongside 4 year olds. As the mom of a 4 year old, that would feel weird to me.

I agree that the nurse's office is a good option if there is one. why are they refusing to let him use the room in the office?

[blessedwithboys]

Thanks for the replies!

We do have a clinic, but the lights stay on and the door stays open at all times.  We had to let our nurse go due to budget cuts, so the receptionists are the only ones available to monitor the kids in there.  Because they have other duties, they have to keep the door open.  If we put ds in there, it would defeat the whole purpose of the nap, as he would be receving way too much stimulation for it to be restful.  The clinic is literally 5 feet away from the main entrance of the front office.

Set slightly further away from the entrance, but still within hearing and visual range of the front desk ladies is the Parent Resource Room.  It is rarely used, but they are still unwilling to close it for 20-30 minutes each afternoon.  All the other empty rooms in the building would be too "private" to satisfy their supervision requirements.

I totaly smacked down the idea of him napping with the little ones.  Too humiliating for him, and if I had a 4yo, I would be totally creeped out by having an almost-adult sleeping alongside him/her.

Can someone help me understand their contention that he doesn't meet the requirement for disability accommodations due to good grades?  They are saying there is no "educational need", but I like the comparison to a child with diabetes.  Based on that reasoning, my ds should have no issues being accommodated.  (I do know that certain issues do not qualify, like when my younger ds needed OT for SPD.  The school wouldn't help with that bc they felt his sensory issues didn't interfere with his learning.  If he was unable to hold a pencil or scissors, they would have provided OT, but his issues were with scratchy clothes and loud noises.)

The sleep lab is calling the SpecEd coordinator today and I ahve contacted an advocacy organization for help.  I'm going to google 504 plan rules, but if anyone else can chime in with advice, I am glad to read it!

[blessedwithboys]

Oh, about napping in the car...we had a car for ds and wanted him to get his license as soon as he turned 16.  He's a really good driver and I thought it would be super convenient for him to drive himself and ds2 to school every day, but when he started not being able to stay awake reliably, we put the car up for sale and postponed getting his license.  Plus, we live in FL and you can't sit in a car without AC running for like 8 months out of the year and that would get really expensive really fast, NTM the carbon output.  :)

[sbgrace]

My son's geneticist arranges for his patients to have these sorts of accomodations in school. He gets involved. I'm wondering if you may need his doctor's push to have them accommodate. They do have to accommodate for medical conditions though so I can't see them able to legally refuse (I guess they aren't refusing exactly) but you may need the doctor to push for a restful place, etc.

The school system has no nurse? That's extremely scary.

[blessedwithboys]

Yeah, no nurse.  The principal is an LPN, so when he started here last year, he let the nurse go.  We have plenty of staff certified in CPR and first-aid, so I guess it's not so bad. 

The nurse practitioner at the sleep lab was supposed to call the school today to talk to the ESE person.  She's really awesome about helping, so I'm sure she'll call.  Our guidance counselor, however...she was supposed to call me today to let me know what time the principal would be available to meet with us so I stayed home all day to wait for her and here it is one hour before dismissal and no call.  I am so not surprised.  :(

I heard back from the advocacy group today and they are sending me a release to sign and then will make me an appointment to set me up with a volunteer to go to the school with me.  They said they know from experience that the "rule" preventing the school from allowing my 16yo ds to be alone in a room with the door shut is totally bogus.