I feel like there is a misconception that children with disabilities just stay at home and aren’t able to participate in many normal activities. Given, there are times when we have to be selective about where Lyra goes and what she does. While she has been doing well recently, she is still considered medically fragile and complex. Also, there are some “normal” one year old activities Lyra simply cannot participate in because developmentally she physically just isn’t there yet. However, that does not mean we are restricted to staying at home. You would be amazed at how creative parents and children are. The truth is, like many other kids with disabilities, Lyra is just a kid… we just do things differently.
The biggest hurdle for Lyra participating in activities is her tube (not her developmental delays). It’s not the fact that it is there, it’s the fact that she is connected to her pump 20+ hours per day. So, I have become very creative. My two most valuable tools: her backpack and a Mommy Hook. Oh how I love the Mommy Hook. I hang her backpack everywhere: in the car, on a swing, in a tree, on a fence, on the back of a chair, on her walker….. the list goes on and on. Lyra goes everywhere with me, and she does it with her pump.
The proudest moment I had, as far as creativity goes, was figuring out how to let her swim while connected to her pump. On our recent trip to Hawaii we simply put her backpack into two plastic bags and then floated it behind us in an infant floaty! It worked great. We were able to swim with her like we did with all of the other infants in our family. And she had a blast! She was able to do it…. just in a different way.
Now, I am not saying that Lyra is able to do everything an average one year old does. Developmentally she just isn’t there yet and it would be unreasonable for me to expect her to do those things. She doesn’t walk or even crawl (although she is SO CLOSE), so some activities just aren’t going to happen right now. She also has trouble with the heat and seems to struggle a little regulating her body temperature, so we just have to make sure we have a way to cool her off with these hot summer months. But she loves to swing and even goes down slides with her daddy. She plays with her cousins and sits at the dinner table with the rest of the family. She just comes with a few attachments and we just have to do things a little differently.