My oldest son uses a wheelchair. Because of his physical disability, he relies on people to help him with his daily needs. He needs help getting dressed. He needs help bathing. He needs help eating. He needs help playing. He needs help accessing his environment.
He basically needs help with everything.
It must be hard not having any privacy. As he gets older, I know this is going to be harder. He’s 10 now and going into middle school next year. Kids/teenagers don’t want adults around when they’re hanging out. Thankfully, some of the kids at school help him too. The aide is good at standing back and letting natural supports happen.
Our goal for our son is for him to be as independent as possible. He has a Speech Generated Device (SGD) that gives him the ability to talk. He also has a power wheelchair, which he operates with his head. As he gets better at using that, he won’t need someone to push him.
We try to accommodate his surroundings as much as possible so that he can be as independent as possible. For instance, we just remodeled his bathroom. He can now roll completely up to the sink. The faucet has a sensor. We can now teach him how to wash his own hands without help!
We also just bought him a cell phone—GASP! Through the Bluetooth on his SGD, he can now text and call people. If he wants to talk to his favorite aunt, now he can without our help. If he wants to text his friends, he can do that too. He was so thrilled to be able to do something so simple. Technology is opening his world.
He also enjoys watching TV… a lot! He’ll sit in his room all day if we let him. When he needs the channel changed, he screeches and yells out for us. It’s a lot of up and down for us! We just learned how to pair the Apple TV remote to his SGD. Now he can search Apple TV for whatever he wants to watch. He can change the channels and volume whenever he wants. He doesn’t need us! It’s such a bittersweet feeling.
I am so thankful for all the new and wonderful technology. It is giving our son his freedom. It is helping to make him as independent as possible. It’s a beautiful thing.
Learn more about helping your child build their independence.
“Being a mom is like jumping out of a plane with a bunch of people who don’t know how to open their own chutes. So you fly around doing it for them. Then you hit the ground. But you don’t die. You get up and you cook dinner.” -Unknown
Categories: Family Support