It’s Thursday again. It’s one of our busier days of the week. Cayden is still asleep in bed and pulls the blankets back up over his head. Mornings tend to be hard for him. He falls asleep easily but doesn’t always sleep well during the night. All the remotes and technology are hidden and locked up in our room at night because of this. We have found him playing video games at night and have no idea how long he has been awake.
On this particular morning, he doesn’t want to get up. This isn’t unusual though. I change him and get him dressed in bed and let him sleep some more while I finish getting ready and get Caleb ready. I try to remember to check his backpack and have everything for school packed and snacks for after school ready to go.
7:10 rolls around and I get Cayden out of bed and his shoes on, we make it downstairs in time to put a jacket on and walk out to the bus. I wait for Cayden in my school office for his bus to drop him off. When he gets dropped off, we have time for a quick snack and a bathroom break. It’s then off to the YMCA to pick up Caleb and head to the local bowling alley.
Bowling is a sport that Cayden really enjoys. He’s gotten much better with throwing the ball down the lane. Recently, Cayden loves to chat with others that are bowling and talk about getting strikes. Most people will engage with him and give him high fives that he asks for. We are still working on giving soft high fives instead of winding up and hitting as hard as we can. After bowling one game and drinking our root beer, it’s time to head to OT.
In the last few weeks, OT has been hard. The last two sessions have ended early with Cayden kicking and growling at people. His tiredness shows up in his increased behaviors. He has difficulty handling situations and dealing with his frustration. In the past, we have tried to get him help with his sleep. The solution was a C-PAP machine, which as you can imagine did not go well. Cayden would tolerate it for a couple of minutes and that was all. We are looking into getting him medication that will allow him to have better sleep during the night.
However, to get that help, it requires us to see a specialist. We’ve seen this specialist years ago when Cayden was younger. This was before we knew Cayden had a genetic disorder. The doctor said to give it a couple of years and Cayden could catch up on the milestones that he was delayed in. Well, we know now that there was more going on at that time and that Cayden wasn’t going to just catch up on everything in a year. Cayden has made great strides and is doing far better than we could have imagined.
My fear is that they will try to give Cayden another diagnosis. I don’t want a diagnosis. I don’t want him to be labeled somethi
ng that he isn’t just because he has some similarities. This doctor we are going to see specializes in Autism and Neuropsych disabilities. I don’t believe Cayden has Autism and I don’t want him to get another diagnosis. I want him to get help with his sleep.
With better sleep, I think we’ll see a better Cayden. Last Thursday when we left OT early we went straight home. Our normal is Arctic Circle afterward for ice cream sundaes. Cayden loves the Oreo Sundae and has gotten good enough to order it by himself. “Whipped cream and no nuts” he’ll say. This Thursday it was a frustrating drive home ending with Cayden going to bed at 6:30.
He ended up sleeping the entire night, 12-plus hours of sleep. It would be a great thing to get Cayden the sleep he needs so he can be the happy little boy he used to be. Granted he’s not always upset and grouchy. But it is becoming more frequent and more of a disruption the older he gets. It’s not all his fault either. His body isn’t performing as it should. Just like we don’t perform as we should on 5 hours of sleep and no coffee.
Hopefully, the upcoming appointment will give us some answers and some help sleeping. We could all use some better sleep and some more Oreo Sundaes.
Pains and Joys of Raising a Disabled Child 
Leave a comment