I have no idea what Jack is doing right now. In fact, I have no idea what Jack is doing between the hours of 9-4 on Tuesdays or Wednesdays or Thursdays. He comes home happy, but I don’t know what he’s eaten or who he’s seen. I don’t even know if he’s gone to the bathroom unless I have a hint because he’s wearing a new set of clothes. 

Since Jack’s post-ALD-life started in 2007, he always had a one-to-one aide at school. Each one of those amazing people became part of our family quickly and their daily correspondence was a welcomed part of our day. We knew what Jack had eaten and when. We knew if he had had therapy that day or spent time on the playground or in the pool. We knew if he had celebrated a friend’s birthday and we always knew if there was a party that involved music and dancing. Taryn/Sabrina/Sara/Monica would send pictures and notes and it was the next best thing to being right there with JackO.

Now Jack is attending Universal – it’s an adult program and it’s different. At first, I hated the different, but I’m starting to apricate that it is good for me to let go a little. Jack is 23 and I know that his program is filled with staff that care for their clients. They know how to keep everyone safe and well-fed and entertained. Besides, Jack would let us know if he didn’t like the program. He might be lacking speech, but he has a way of telling us plenty through his beautiful eyes.

I would love a story or two about his day, but I’m willing to give our boy a little independence. After all, I am not sure what Anna has eaten today OR if she has gone to the bathroom — Why shouldn’t JackO get some privacy?!?!?!

Having a child with disabilities is challenging. It took us years to get accustomed to our new life, but we did. Having an adult child with disabilities is taking a little time to adjust, but we will. That’s what we do. And, Jack will — once again — lead the way!

Love, Jess