Insomnia affects the entire family:
Maya has always had insomnia. She also wakes us a few times a night to help turn her, take her to the bathroom, help her blow her nose (and she may go back to sleep but we won’t) etc. It’s a routine of sorts that although we are accustomed to, it wears on us as a family more than I realize at times-snapping at Maya, my husband and others. Finally this year and after many years of interrupted sleep, Maya’s dad and I agreed to forego some of our privacy and get extra help in the evening (respite care). No, it doesn’t replace sleep but it helps us to have an extra set of hands when our energy is waning at the end of the day.
Insomnia and CP are not uncommon (it’s also not uncommon in the general population) but there can be different reasons associated with waking that are important to pinpoint and potentially address to minimize sleep disturbances. These may include pain, digestion issues, problems related to nighttime routines, epilepsy, lack of exercise, hormonal causes and more. In Maya’s case she has a variety of issues going on and not all of them relate to CP. What’s tough is that these issues tend to rotate which means that it’s rare for her to sleep through the night uninterrupted.
I bring this up because I recall when Maya was an infant feeling very discouraged, almost desperate for sleep and none of the new mothers I spoke to could relate to the intensity and duration of these nighttime problems. It wasn’t just about nighttime waking, but that she wasn’t a napper either. She was deemed a colicky baby with no good solutions except time. As Maya got older I saw on some of the CP social media boards that other parents were regularly posting about having sleep issues with their children and a long list of responses with “have you tried…i.e–light music, essential oils, eliminating sweets, melatonin, sticking to the same nighttime routine, a warm bath, soft music, and on and on”? without success. It was clear that insomnia was a problem many families had faced and some were continuing to face and often without great solutions.
If you are in this boat, it may help you to know that you aren’t alone. I know, it’s not nearly as helpful as a good night’s sleep. If you have been to a sleep specialist/s and have tried this, that, and the other, you may wish to consider respite care sooner than we did. And although overnight care didn’t work for Maya (she was always excited to see the nighttime helpers) it may be a good solution for you. It’s amazing how much more energy that little bit of support can give you and the entire family. We need to keep up our energy for ourselves and our kiddos. If you can’t get a handle on the sleepless nights, don’t be shy about reaching out for support.
Update 6/6/2016–Obstructive Sleep Apnea Commonly Undiagnosed in CP
We needed a different bed rail to go with our new adjustable bed. The one we have doesn’t fold down and made it more difficult to get Maya out of bed (we had to lift her above the bed rail). I am learning now that Maya is older sometimes solutions can be found on the adult or “aging” marketplace. That is where I found our new one. We used it last night and it was great!! I also found one by the same company that is being marketed for children and may be a good option for some of you to travel with or use at home. I did find an option on the infant/child market that folds down as well but is not intended to be used as a support for the individual to come into standing.
It’s important to be mindful of your child’s particular needs, size, abilities etc. when selecting any equipment or supports. Products designed for the elderly don’t necessarily meet or haven’t been tested for the safety needs of children.
Here is what I found:
Here is rail that folds down and can be used to help provide support to the individual to come into standing. We purchased it with the cover and it can be used with an adjustable bed:
*One design flaw that we noticed: We bought the one with the cover and pouches but when you fold it down anything in the pouch falls out.
Here is a link to the same company’s “children’s” bed rail. It appears to be the same as the adult one but perhaps with a different cover. I am not sure. Let me know if you see or read about a difference. http://www.medicalproductsdirect.com/bedrastchbed.html
Here is one less expensive option I found on the infant/child market:http://www.amazon.com/Summer-Infant-Secure-Folding-Bedrail/dp/B00ARASMZ8