Did you know sleep deprivation is an actual form of torture? And yet, special needs parents are one of the most sleep-deprived groups of people on the planet. When you research the health effects of sleep deprivation, it's alarming. Everyone needs sleep to function. It's vital to your physical and mental health. But when you have a child with a neurological disability, independent sleep can be very challenging to accomplish for both child and caregiver alike.
For children with cerebral palsy or other severe neurological conditions, muscle tone, body pain, muscle spasms, seizures, anxiety, and respiratory problems all contribute to sleep problems. Couple this with a child who can't explain with words or communicate what is going on, and it's no wonder parents experience caregiver burnout. It's exhausting and defeating for everyone.
Of course we try all the "sleep tricks" such as essential oils, weighted blankets, bedtime routines, sound machines, black-out curtains, etc. But for "our" kids, there sleep challenges go beyond what is typical. Sometimes, or most of the time, kids like Karter need more specialized supports.
We have yet to find the perfect solution for Karter. However, some supports do exist! They may help improve your child's ability to achieve independent sleep. Click on the link below to view some of our sleep solutions. Perhaps there may be something that can make a difference for your child.
This may seem like "captain obvious," but I've been shocked that some other parents have had push-back from medical teams on actual medications. For Karter, muscle spasms, anxiety, seizures, and positioning are largely to blame for his sleep difficulties. I will tackle the latter next, but it is important to know that sometimes it takes medication for some of the other symptoms that are contributing. There are all sorts of medications that can help with tight muscles or anxiety that may be worth trying. Of course seizures are a whole 'nother topic, but there are some seizure medications that have side effects of sleep. Tweaking the timing of these medications can help improve sleep, and in my opinion, is worth exploring.
There are also medications for insomnia. And yes, they ARE FOR CHILDREN. We work closely with a sleep medicine doctor, and after a couple years of trying the "typical" sleep tricks, we succumbed to trying medication for insomnia. The reality is, you need a healthy brain to regulate sleep. Thus, when your brain is significantly injured, sleep is inevitably going to be difficult.
At first I was skeptical of trying these. I felt guilty for "medicating" my child. However, after more research and thought, I've realized how much sleep matters to everyone's health. For Karter, his seizure threshold is lowered when he is tired. Everyone is healthier with good sleep. We use medications for seizures, muscle tone, and pain- so why not sleep, too? It's something to seriously consider. It certainly helped us.
I have realized over time that much of Karter's sleep challenges is related to positioning. He doesn't have the motor control or strength to roll or reposition himself . He also needs to be upright due to his reflux and respiratory challenges. Even with medications, sometimes he gets uncomfortable and/or needs to be re-positioned. Sometimes no matter what you have, your child will need help getting into a new position. But there are things out there than can help them stay comfortable for longer stretches. Here are some of the supports we have tried to help improve his sleep by improving his sleep position.
The first thing we tried was a Versaform pillow. Tumbleform makes this product. Essentially it is a pillow that can form to your child, and serve as a way to keep them supported and in position. We used to put this on a wedge, and shape the pillow in a way that provided him support to stay elevated. Insurance and/or medical assistance may cover this.
No matter what you have your child sleeping in, he/she may simply need a few positioning pillows to stay comfortable and safe. After Karter's hip surgery, our local hospital sent us home with these: Molnlycke Z-flo Fluid Positioners. We use them for all sorts of things, but especially sleep! They come in all sorts of sizes. You may want to ask your PM&R or primary care physician about these.
The Comfy Lift Mattress is a mattress that can fit in any toddler bedframe (or twin, depending on the size). It is designed to keep kids who have reflux or respiratory needs elevated. Since Karter moves his legs frequently, this would cause him to slide down the incline. Thus, we had to use a combination of positioning pillows and this mattress.
Still, it worked to keep him elevated and comfortable. Insurance and/or medical assistance may cover this.
After requesting a bed evaluation at our local hospital, the team recommended Symmetrikit Sleep System. This system comes with all sorts of positioning supports that will be custom picked for your child's unique needs. It is meant to be put on any bed, so in theory it can travel. Once the positioners are in place, it's covered with a pad for comfort and shape. It's secured by a cover sheet that is washable. See our demo video below!
Check out this video to see how the Versaform pillow works, as well as the Comfy Lift Mattress!
Check out this video that demonstrates how we use the Symetrikit Sleep System!
These are just a few ideas that we've learned, but know so much more exist! We'd love to add content to this section! If you have other suggestions that have worked with your child, please let us know!