Tuesday, March 18, 2014

Non-24 is a Pain-In-The… Energy!

Orion, with his scleral shells back in after a few-month hiatus.   Here in this Instaphoto collage, he covers his face with a favorite blankie, pulls it off with eyes closed, and finally opens his beautiful white eyelashes. He definitely can be Storm's little cousin (Marvel comics). (3/15/2014)
Last year, the 2012-2013 school year, I was with Orion every morning he was at Texas School for the Deaf's Parent-Infant Program house (PIP is now called Toddler Learning Center, TLC)  In the beginning we went twice a week and that evolved to three times a week.

This school year, Orion has been going every day from the arrival of his bus* at TSD at 8 a.m. to parent pick-up at 11:30 a.m.  He spends his mornings with his intervener and teacher.  We are in the middle of transitioning him to staying full days just like the other kids his age.  So with the time extension he starts his morning with the same teacher he had last year ("A") and then his experienced Deafblind intervener  ("L") arrives at 11:30 a.m.  Presently he is staying until 1 or 1:30 p.m., depending on the day of the week.  And there's his naps...

Orion is notorious for surprise naps, taking naps earlier, or later, not at all or really long naps after a night of waking up.  With Orion's near-total blindness (he has a little light perception in his right eye), it brings Non-24 Hour Sleep-Wake Syndrome.  It is a circadian rhythm disorder and there's a campaign going on to spread awareness about this syndrome that approximately 70% of totally blind people experience.  My mother shared this website with me after hearing it on the radio one day:


My knowledge of Non-24 has been superficial all these years.  I know it explains why Orion's sleeping (thus ours, too) is out of whack.  I've always thought Orion had a 25-hour body clock.  We've noticed he'd go to bed around an hour later and later each night to the point where he's awake all night and sleeping all day.  His clock keeps going forward until it returns full circle with our 24-hour clock.  When the daytime sleeping happens, melatonin has no effect at night.  That period is rough for him and his parents.

I was reminded what it felt like having nights of uninterrupted sleep during a recent 4-night stay in Phoenix, AZ with fellow OHOA module creators.  Three nights of uninterrupted sleep in a row!  It was awesome!  I haven't had this in a looooooong time!  I'm sure the pillow-top mattress contributed to the miracle, too.

Thankfully, Orion's big siblings are not affected by his crying.  We recently stayed in a Galveston area hotel for two nights, for the kids to go to Schlitterbahn's indoor water park and Kemah Boardwalk. Two nights in a row Orion was crying and arching/dropping his back, bouncing on the very same bed Anastasia was sleeping on.  She… did… not… wake up!

Thomas stayed with Orion at the hotel, we could not imagine him writhing and complaining at Schlitterbahn, too.  Imagine paying $26.99 to get into Schlitterbahn to hold an angry 3-year old the whole time there!  (It did happen to me before, paying admission for myself and Orion at Imagine Children's Museum in Everett, WA.  I held a fussing, wiggling Orion the whole time while Skyler and Anastasia explored and had fun.)  Hopefully everything will work out next time for anywhere there's paid admission for "entertainment"!

We feel Orion knew he was not at home.  He was cranky most of the time in the hotel room.  He was happy when he was in his usual car seat. Even during the 3 hour drive to and from!

Anyway, back to the point.  I already knew what Non-24 is but what I'm learning is how it affects individuals.  According to the website, those who have it experience unexpectedly falling asleep, difficulty concentrating, mood is affected, decreased productivity in school or work, and the like.  One line stood out to me: "You're frustrated because no one seems to understand what you're going through."

Frustrated because no one seems to understand… Beyond that is the fact Orion is not yet able to tell us what is bothering him.  Does he have a headache? Does he just want to hang out on the floor at a home?  Is he feeling tired beyond belief?  Does he want some of the cappuccino he's been smelling?  I may actually just give him some!  My oldest boy, Skyler,  steals sips of my caramel Frappuccinos when he can.

Heck, if you think about it, if you don't get your caffeine, how do you function on botched sleep?  Or if you're wasted from a night of unconventional sleep and don't do coffee, espresso or energy drinks, how do you get through the day?

An all-teeth, caffeine-free smile from Orion!

We have been giving Orion a 3mg melatonin pill every night, grounded and mixed into yogurt or applesauce.  It does wonders getting him to fall asleep at bedtime.  That's it.  Falling asleep is it's job.  Full nights of sleep is another thing.  Orion does have nights of full sleep from time to time, 6 or so hours of sleep, or so we think…

Last night Orion slept at 10:30 p.m. (thank you, melatonin!) but woke up at 3 a.m.  Oh, joy!

Non-24 is real.  Non-24 is a real pain in the… energy!

Until the next blog post, wish us all deep, rejuvenating sleep!

*bus: Not all roses for Orion.  He doesn't cry at all when we drive him to school ourselves.  Car seat preferences? Smoothness of ride?  Big brother Skyler can only do so much.  We're going to sort this out so Orion is happier on his bus rides to school.
Curious about OHOA?  A brief description of Open Hands, Open Access on nationaldb.org.  Feel free to poke around nationaldb.org and the link to check out the content that is already available via OHOA.  I am so excited about the development of OHOA and see that the future in education is bright for Deafblind youth as well as interveners across the USA!