Sleep, Sickness, and Safety
It’s been awhile since of written a blog, but that’s ok because we have been enjoying summer!! Now that we are about mid-way through the summer, this blog post topic came to the forefront of my mind. This is one that is not meant to make anyone “feel sorry” for us, because we are a very blessed family with so much to be thankful for! This post is just to bring awareness to some things that I never even thought of before I became the parent of a child with Special Needs.
Sleep, sickness, and safety are things that are a part of every humans daily lives. We all require sleep to function, it is inevitable that we will get sick from time to time, and in order to go about our day-to-day, we must remain safe. These are things that are very difficult for our littlest son Benny. He does require sleep to function, but his body fights and acts like it doesn’t need sleep. Benny gets sick from time to time, but has no way of telling us what it is that is bothering him or letting us know that something is coming on. And finally, he needs to be safe, but has no safety awareness about him.
In the the past week, Benny had not been sleeping very well at night time or during the day for naps. This is not completely abnormal, but it is definitely not his norm. About a year ago, we decided to look into medicating Benny to be able to get sleep at night. This was and is vital for his growth and development. As caregivers, it is necessary for us as well to be able to care for him daily. It took a few tries with different medications, but we seem to have found a combination that is working pretty well. Currently a good night for Benny looks like: giving sleep meds at 7:30pm, getting put in his bed by 8:00pm, and sleeping by 8:30pm usually at the latest. He will do one of two things overnight. He will either wake up once to get snuggles and a water/milk combo bottle, or he will sleep through the night until 5-6am. I have never looked back on deciding to medicate him because it has been a lifesaver for him and us. Families need to do what works for them.
Last week, Benny had a night that reminded me of the “pre-sleep med days.” He woke up at 1:30am, and was up for the rest of the day. This momma tried EVERYTHING, and therefore got very little sleep as well. When I thought back on his sleep patterns the nights before, I realized he had been waking up more than once, which is not his normal. This led me to think about the fact that there could be something wrong with him. Being a non-verbal child, he isn’t able to tell us when something is bothering him, so we have to watch for patterns in behavior.
Here starts the “Sickness” part of the blog. While noticing his sleep patterns were definitely off, I also realized that he was drinking less and less fluids. Benny gets most of his nutrition by drinking a special formula. The only foods that he will eat are animal crackers and goldfish crackers. Benny had started gagging when seeing his bottle, and getting any fluids or medication in him became nearly impossible. I racked my brain about what could be wrong and decided visiting Urgent Care was our best option.
Urgent Care (or any doctor appointment) can be difficult for anyone, especially small children. Doctor visits with a Special Needs child is another story. When they want to weigh him, he screams. When they want to take his blood pressure he screams and fights. When they try to listen to his heart and lungs, he screams. These are the “simple” things in the office, and he is just plain terrified. Looking into his ears nose and throat require hands and legs restrained carefully, and his head held in position so they can look - while he screams. I’m 100% fine doing all of these things because I know that the doctor can then diagnose the problem and get him the help that he needs, but its a lot, physically and mentally. Getting our son the medical care that he needs when he is sick is necessary, but also complex. The littlest things, are huge to him. The anxiety of the visit is beyond real for him.
Finally the safety part of living with Special Needs. Benny as absolutely no safety awareness. Can you imagine? In his world everything is fair game and there are no consequences to doing unsafe things. Benny currently sleeps in a crib still, but we recently received his safety bed from Safe Place Bedding through a grant that we applied for with the Angleman Foundation. Had Benny been in his safety bed the night he was up half the night, I probably would’ve gotten more sleep myself. However, the fear of him lifting his leg and trying to crawl out of his crib is now REAL. He’s super mobile, but not super coordinated. While fighting sleep that night for hours, he jumped up and down in his bed and walked around the perimeter of it, thinking how to get out. We definitely need to get that safety bed put together for his sake and ours!
With all of that being said, this summer we hired a daytime nanny for Benny. We were not planning on doing this, but the opportunity presented itself and we thought, let’s try it for Benny’s sake! Children with high needs like Benny require 24 hour supervision and care, and he likely will need that level of care for the rest of his life. He will not grow up, get his own place and move out. He will need someone. He will not just come home from school and go hang out with friends, he will need someone. If I can stress anything to special needs families, its to access and reach out all of the supports you can find - for you and for them. Our children are amazing, and they deserve caregivers that are rested and ready to take on the day with them, no matter what situation presents itself!
Thanks for reading, and remember if you ever have any questions, comments or stories to share, please email them to believinginbenny1@gmail.com. We would love to hear from you! Until next time!
