Embracing Emmett: Just A Little Update

I can’t believe that the year 2021 is nearly over. Although things aren’t quite back to “normal”, they are definitely getting closer. All in all, Emmett has had a good year. Thankfully, he has been pretty healthy with just a few mild colds. He continues to get stronger and make progress. He has also gotten taller and has lost a few more baby teeth. He is still small for his age and has toddler sized feet, but he is growing and may actually reach 50 pounds by his 10th birthday!

Although Emmett has been healthy, one of his doctors was concerned about his posture because he tends to hold his shoulders back and push his belly out when he walks. This summer he got a flexible back brace to help minimize this, which will hopefully prevent back problems in the future. He doesn’t have to wear it all of the time, but he actually really likes it because it is very snug. I think he likes the compression feeling and feels like he’s getting a tight hug when he’s wearing it. We followed up with his doctor a few weeks ago and she believes that it is helping.

We also recently discovered that Emmett likes to wear hats. Over the past several months, he has been hitting himself on the head with his hand. He would sometimes do it out of frustration, but other times, there didn’t seem to be any triggers. After trying a few different things to minimize the behavior, with the help of his ABA program, we realized that wearing a hat seems to help. He must like the gentle pressure on his head. He will still hit himself occasionally, but it has decreased significantly since we started giving him a hat to wear. Many people with Xia-Gibbs Syndrome are sensory seekers, so this makes complete sense. We definitely don’t want him hitting himself, especially as he gets bigger and stronger, so I hope that this strategy continues to help.

One of the most exciting things about this year is that Emmett has finally learned how to isolate his pointer finger and has been learning how to use a communication app on an iPad. As his skills improve, we will be able to add more folders and choices for him. He has been using pictures on Velcro to communicate for quite a while, but being able to use a device will definitely make it easier to keep up to date and make changes. In the past, he just didn’t have the understanding or the fine motor skills to properly use a touchscreen, which meant we couldn’t get a device covered through insurance. Thankfully, we were able to borrow a device for him to practice on and he has made amazing progress, which means that he will be receiving his very own device within the next few months.

He has actually gotten so used to using an iPad to communicate, a few months ago, he thought that the license plate on his Nana’s car was an iPad and he couldn’t figure out why it wouldn’t do anything when he pushed on it.

Even when he doesn’t have his pictures or an iPad to use, Emmett is still very good about showing us what he wants. Typically, if I hold out two things for him to choose from, he will either grab what he wants or push away what he doesn’t want. A while back, I held out two different types of cookies for him to choose from and instead of grabbing one, he leaned over and took a huge bite out of one of them! I’d say that his choice was very clear that time. We don’t always understand what he wants, but I am thankful that we can figure it out most of the time. It is definitely a lot easier than it used to be.

I’m not sure what the year 2022 will bring for Emmett, but I do know that he keeps making progress and that he will continue to amaze us.