Jack’s been trying out a new look lately. It was Anna’s idea and, as Jack’s personal shaver, we let her run with it. Jack’s now sporting a goatee. He looks like a man — I no longer have a child-child with special needs, I have an adult-child with special needs.
It’s different and it’s scaring me.
I remember sitting on the beach on Block Island several years ago when I saw a couple walking down the beach hand-in-hand. My first thought was that I was proud of living in a country that people didn’t need to hid their love. These men looked so happy as they were enjoying the sunshine and each other. Then, as they got closer, I noticed that one of the men was clearly helping the other manage the sand and the water. They weren’t lovers, they were friends or brothers and one had special needs.
Before that day, I hadn’t spent much time thinking about what life would be like once Jack was an adult. We’d done all the responsible things to prepare (wills and trusts and guardianship plans), but I hadn’t really thought about what day-to-day life would look like once Jack’s childhood was over. Suddenly I was filled with questions. How/where do you change a diaper inconspicuously? What kinds of programs are available for adults with special needs? What will JackO do without his beloved Banana’s hugs every morning? Will we need to move? Will we need live-in help to help bathe/dress/care for our son?
Like most thoughts that make me uncomfortable, I stored them away in the back of my mind. They’ve been living quietly there, but now when I look at Jack and his hipster beard, the thoughts and questions are flooding to the surface.
The problem is that I don’t know what to expect with this new chapter. I’ve worked really hard for us to be “a normal family with a special child” (I know “normal” isn’t the right word – What is normal? Perhaps a better word would be typical or standard. I hope you understand what I’m saying). It’s taken ten years, but our family has finally reached a place where our lives (mostly) parallel the lives of our friends and neighbors. Sure, we can’t do everything that we could do before ALD, but with a few adaptations we’ve managed pretty well to keep things in line with our pre-ALD existence. We’ve learned to focus on what Jack CAN do, not his challenges. We’ve found schools and programs that have supported our goals and Jack gets to go to school each day with kids that we’ve come to know and a staff that’s devoted to these special teens. Our family has worked out ways to continue to do things we love. We spend time with family, go on long walks, visit with friends, travel.
We’ve also had Anna and all of her “normal” activities to keep us safely anchored in the normal/typical/standard world. Our lives work. We are happy, well adjusted, very few complaints.
Now Jack and his beard are a constant reminder that change is on the horizon. Our next IEP is focusing on preparing for his transition as he ages out of high school (there is some time, but we need to start the process) and Anna and all her “normal everyday stuff” is leaving for Baltimore before long. I’m not clear as to what our days will look like once these changes happen.
CHANGE is a four letter word.
I’m trying everything — books, breathing, essential oils, therapy. I need to figure out the optimal strategies for making this transition bearable — even positive. I’m making some strides, but I think what I really need to do is to remember that couple on the beach on Block Island. Neither seemed to be focused on anything but each other, the sand and the sunshine. They were acting the way that we do TODAY when we walk through life with our boy . . . our MAN.
We will get there. That’s what we do.