Corinne, who is diagnosed with Rett Syndrome, and her sister Haley.
Haley made the great artwork behind them in honor of her sister.
The Last Nap for a Sleepless Child
by Terri Hart-Ellis
Though she falls asleep with relative ease, remaining in repose has been a challenge for my kindergartner since infanthood. Along with her diagnosis of Rubinstein-Taybi Syndrome came obstructive sleep apnea and a variety of parasomnias. Despite having had her tonsils and adenoids removed, thus minimizing the obstruction, her repetitive motions and frequent awakenings have not subsided in the years since surgery.
Not surprisingly, we hear reports of her falling hopelessly asleep during less active or engaging times at school. For example, one day she piled on her outdoor gear in the coat room and came back to wait for dismissal in the classroom on the rug with her friends. Alas, she passed out on her proprietary purple carpet square and did not budge when the aide lifted her after the rest of the kids had gone.
Focus: Sleep (or Lack Thereof)
Sleep Problems in Children with Special Needs
Sleep problems are common in all children, and some estimates suggest
that up to 30% of children experience difficulty with sleep or have
diagnosed sleep problems.1 In children with special needs, medical issues or disabilities, this
number is even higher, with up to 80% of these children diagnosed with a
sleep problem.2
But just what
are these sleep problems and how are they treated? In order to answer
this question, we undertook a survey of parents of children with special
needs, asking them general questions about their children's sleep
problems. We received 84 surveys that met our criteria. A handful of
surveys were not included due to duplication, age (children under age
one were excluded), lack of special needs, or lack of sleep problems.
"Just Five More Minutes!" A Look at Chronic Sleep Deprivation in Parenting Children With Special and Medical Needs
by Lindsay Knops
I know why sleep deprivation is used as a form of torture. When my daughter, Ava, was born, I felt like a prisoner of war. Not from the beginning, because as a first-time mom, I had no idea what was "normal." Yes, I know...babies don't sleep. Those lucky moms and dads who have a good sleeper are often secretly, or even occasionally publicly, begrudged by those who deal with colic, reflux, or more night-wakings than usual. But, what happens when there are compounding factors: medications, monitors, feeding tubes, oxygen, IVs? This is when the sleep-deprived new parent graduates to a new, and potentially dangerous, level of exhaustion.
by Lindsay Knops
I know why sleep deprivation is used as a form of torture. When my daughter, Ava, was born, I felt like a prisoner of war. Not from the beginning, because as a first-time mom, I had no idea what was "normal." Yes, I know...babies don't sleep. Those lucky moms and dads who have a good sleeper are often secretly, or even occasionally publicly, begrudged by those who deal with colic, reflux, or more night-wakings than usual. But, what happens when there are compounding factors: medications, monitors, feeding tubes, oxygen, IVs? This is when the sleep-deprived new parent graduates to a new, and potentially dangerous, level of exhaustion.
Surviving a Sleep Study
by Heidi Forney
I remember nearly nine years ago when our pulmonologist first told me
that my son Sean needed a sleep study. I had no clue what that would be
like. I figured that it would be a room in a hospital where they
watched him sleep, and I would sit up all night making sure that he was
OK. And that none of his normal at-home equipment was touched by
people who didn’t know what it was for or how it was used. Little did I
really know what we were in for, and I was pleasantly surprised, for
the most part.
Specialty Article
Feeding Tube Awareness Week
by Traci Nagy
It started with Sesame Street. My two and a half year old son, Lucas, and I watch Sesame Street most mornings. Lucas has a rare chromosomal microdeletion that has caused him to have complete gastroparesis (paralysis of the stomach), among other GI disorders and developmental delays. He has been on a feeding tube nearly his entire life.
He loves Elmo so much, he gets whole-body excited at the theme song. I have seen a lot of Sesame Street, and have been impressed that they do incorporate children with special needs in situations where their abilities are the focus. There was a boy who was blind who sang beautifully. Elmo says he is sorry he is blind and the boy says, “Don't be, it is completely natural for me not to see.” I looked at Lucas. It is completely natural for him not to eat or drink. It has become so natural for him to be tube fed, that I don't even think of him eating and drinking differently. That is, until we have the painful reminders when we get stared at. There aren't many toddlers around with a backpack attached to their swing at the park with tubes hanging out.
I really want to see a child who is tube fed on Sesame Street. I want Elmo to ask him what is in his backpack and have the child say, "It is my feeding pump. I just eat differently because my tummy doesn't work like yours." And Elmo will say, "Oh, that is OK, we are all different!"
Developmental, Orthopedic, Neuromuscular, and Neurological Disorders
Should Children with Severe Neurological Issues Be on Monitors During Sleep?
I personally know four children with severe neurological issues who have passed away suddenly during sleep. While all had very severe disabilities, primarily cerebral palsy or brain malformations that caused them to be non-mobile, all were healthy children who were not expected to die imminently. None required oxygen or respiratory support, some did not even have feeding tubes, and none were on any sort of monitor at night. Their deaths were all shockingly unexpected.
I've often wondered whether deaths like these could be prevented if these children were on some sort of monitor at night. While it is difficult to know the answer to this question, especially given the fact that this issue has not been studied to any extent, it seems plausible that some children could be saved if placed on monitors.
Feature Article
When I grow up I want to invent something like the iPad. I want to bring to the world a piece of technology so revolutionary and accessible that kids with special needs everywhere will be singing my praises: "Go, Allison! Go Allison!" Alas, for now, that praise belongs to Steve Jobs. Go Steve! Go, Steve!
The world, pre-iPad, (P.I.), was a grim one. If a child with special needs wanted to access a computer, it was quite difficult. To truly use it himself he had to have good hand eye coordination to use a mouse or switch and look at the screen at the same time. Let's face it...many of our kids can't do that. Or if he was one of the lucky few whose insurance company paid $8000 for a communication device he could at least communicate with the world. Thankfully that world is gone. Good riddance!
Enter the age of iPad.