Sleepless Nights With Cody

When it comes to caring for my almost 10 year old son Cody, one of the biggest challenges that I have is at bedtime. This is a problem which has lasted for all of Cody's life and is also one of the lesser talked about challenges of raising a child with Down Syndrome. While I can't speak for all children who have Down Syndrome, I can share my personal experiences with taking care of my son Cody.

For those of you who are new to reading my pieces, here is a brief background about Cody: He is my oldest child (currently, I have 2) and he has multiple medical conditions, the 2 main ones being Lennox-Gastaut Syndrome (also known as LGS) and Down Syndrome. Up until last year, Cody was my only child and I raised him as a single mother for almost 9 years of his life. He requires a maximum amount of care and cannot talk or do anything on his own due to his more serious condition LGS.

Because of Cody's having Down Syndrome, one of the major ways it affects him is his difficulties with sleeping. When Cody was a baby, I used to spend hours up at night just holding and rocking him after giving him his bottle. If I put him down, he would scream all night long. Several nights I was up the entire night, just holding and rocking him, only able to sleep after he fell asleep.

Back then, severely sleep deprived, I began my long process of researching things to try to help my baby be able to go to sleep at night.

The first thing I read was to sing a special song while rocking him. I chose the 2 songs that I played the most while I was pregnant with him. My first night of trying to get him to sleep, I sang them while rocking him. Cody yawned, stretched, finished his bottle, and began drifting off to sleep. I continued this combination of rocking and singing to him until Cody was so deep in sleep, I could put him down into his crib without waking him. This worked for about 1-2 weeks before he was back to his insomniac self and I was back to Google, searching for yet another sleeping solution for my son.

The second suggestion that I found online was to read to my son every night at bedtime. As I had been gifted (and had also bought) enough children's books to fill an entire bookshelf and then some, combined with the fact that I not only have a combination of a very active imagination and am a naturally gifted storyteller, this solution was a very easy one for me to try.

Every night, starting at one end of his bookshelf, I grabbed a book and read it to Cody while holding and rocking him. Every night, before I turned off the table lamp, Cody would do his same routine: yawning, stretching, and drifting off to sleep roughly around the same time I finished reading the last sentence of the last page. I would then shut off the lamp and when I was absolutely certain that Cody was fast asleep enough for me to set him down into his crib without waking him, I would put him down and go to bed.

The book solution seemed to last the longest. In the span of roughly a month and a half, I had read Cody each and every single one of his books and was down to making up original bedtime stories for Cody - stories which he seemed to enjoy. To this day, Cody still enjoys me making up bedtime stories for him. However, just like the first solution, this one would not last and all too soon, I was back to the beginning, as Cody's sleeping problems returned and I was back to doing yet another online search on what to try next in order to help my son be able to sleep.

The third solution that I came across online was to use a night light. This I accomplished by buying a battery operated night light, as none of the plug outlets in his room at the time were in any position on the wall to be able to be used for a traditional night light. When it arrived, I put the batteries in it and turned it on. My son stared at the stars, puppy faces, and crescent moons that it progressed onto the ceiling as I rocked him and fairly quickly, he fell asleep.

Just like the first 2 solutions, this one did not last long (roughly a month). Once again, I found myself in the situation which was becoming all too familiar: the sleeping solution I found online for my son wasn't a permanent one and once again, I was looking up sleeping solutions.

The fourth solution that I came across online and tried was to play lullabies for Cody. He had a toy dog that played them for up to 10 minutes if its paw was pressed and as the music played, I held and rocked Cody to sleep. Within 10 minutes, Cody was sleeping so soundly, that I was able to put him down into his crib and go to sleep myself. Just like the other three, this solution lasted roughly a month before - you guessed it - I was once again looking up ways to help my son to go to sleep.

Solution number five was to do a combination of the first 4. For several nights, I would begin a process that I called Cody's Betime Routine. It began with me reading a book to him, me turning out the light, holding and rocking Cody as I sang to him, playing bedtime music for him, and turning on his night light. Several nights, this entire process worked, even though out of everything I had done in order to help Cody to be able to sleep up to this point, this one was the most exhausting. By the time I was done, the days and nights were melted together into a tangled mass.

This was the solution that lasted the longest out of all of the things I had tried. The fifth solution lasted me several years before it too failed. At this point, I had exhausted all of my solutions and was down to putting Cody into his bed, turning out the light, laying in bed, and waiting for him to fall asleep, all the while trying to sleep myself.

For the last time, I went to Google and looked up sleeping solutions for children. There was one last thing to try and that was to buy an aquatic pet to keep in his room. The idea was he'd watch the pet swim around and it would help him sleep.

Because of the small size of the table, after much research, I bought hirudo verbana, one of which I still have today.

When I started seeing the man who is now my husband, he witnessed several of Cody's sleeping troubles firsthand and strongly suggested that I bring up his sleeping issues to his doctor and see if they could help by getting to the root cause of his chronic insomnia. As everything else that could be tried was, I agreed to this. Within a week, Cody was scheduled for the first of what would be 3 sleep studies.

The first sleep study was done after the doctor's first theory was that Cody was in fact asleep when I thought he was awake and was having seizures which made it appear that he was awake. After having been dropped off, I went upstairs to the sleep medicine room, where the nurse glued what looked like hundreds of electrodes all over Cody's head after I got him ready and put him into the hospital crib.

It should be noted that at this time, for all of his sleep studies, his hirudo verbana came with us in their tanks. They helped my son sleep and this was recorded during his first sleep study.

The results of his first sleep study showed that Cody was not being kept up by seizures, but didn't find the origin of his insomnia.

Second thing the doctor's suspected (and the reason for Cody's second sleep study roughly a month or two after the first one) was that he had sleep apnea.

The results of Cody's second sleep study were that he did, in fact, have sleep apnea caused by oversized tonsils and adenoids. The doctor scheduled him to have surgery and an overnight hospital stay. Afterwards, there was the third (and so far, the last) sleep study.

For this one, Cody slept through the night and I honestly thought that his sleeping issues had been finally permanently resolved. Boy was I wrong!

For a couple of years, Cody had zero problems falling asleep. Then, after I moved out of my mom's house (with our then 3 now 1 hirudo verbana) and he got his own room, his sleeping problems started up again. At this point in time, I was also pregnant and falling asleep long before Cody did due to sheer exhaustion from the pregnancy.

Cody's insomnia meant yet another doctor visit. As of now, the doctor instructed me to give him melatonin along with having Cody seeing a psychiatrist.

Recently, Cody had a particularly long insomniac episode, in which he didn't finally go to sleep until 6 in the morning. This one prompted me to contact his doctor to report it and to try to get him some help.

As of the writing of this, Cody's new bedtime routine is as follows: shower, medicine, melatonin, bedtime story, lights out, and me sitting with him in his room until he goes to sleep. Then, when he's entered a deep sleep, I get up and quietly leave the room, coming back when it's time to get up the next day.

Despite all of this and Cody's other problems, he really is a good kid. It's hard to stay up at night, fighting sleep while waiting for him to fall asleep some nights, but all of my effort is worth it