When Wil was a baby, I declared Wil would get his high school diploma. Wil would have full inclusion in the classrom. Wil would drive. Wil would go to college.
Today, I still have high hopes but they look a lot different from those early declarations. Wil is not going to get a high school diploma. He will earn his Certificate of Completion. Wil is in 7th grade and reading at a beginning 2nd grade level. Does that sound sad to you? It may have to me those many years ago. I may have believed someone wasn’t doing their job.
Today, to see him sit down on the couch, put on his glasses and read a beginning reader’s book is one of my greatest thrills. Or to drive with him in the car and hear him read billboard signs fills me up with a happiness you can’t buy.
Why? Because I now know the steps it took him to get there. And there is no way I could have known what those steps would look like when Wil was a baby. I had to take those steps with him. Day-after-day-after-day.
Those early high hopes were important. They gave me stars to reach for. But as we moved further along the road upwards toward those stars, I saw some where just not going to happen.
Wil works hard, when he wants to, but no matter how hard he works the reality is he has certain limits. He processes words slower. He moves slower. Wil also spends the majority of his time at school in the resource room. The full inclusion I envisioned for him is available, but it’s not the best thing for him. He simply can not comprehend and keep up with all the studies his typical peers are doing. He still spends time with his typical peers in gym, science and social studies. But he learns reading and math in the resource room, along with life skills.
Now Wil is going through puberty. Every morning is a true test. He needs lots and lots of encouragement to get out of bed. If there is any forcing to get him out of bed, his whole day could be set back. It’s hard emotionally, for me. Every morning I need to steel myself for the long haul. For no missteps. I know we will get through this. But right now it’s hard.
I’m entering a new chapter with Wil. I relate it to when he was born. I’m navigating a new place I have not been before. When he was born, I wanted to know what Down syndrome was all about. I could read about it, but I didn’t really know it until I lived it. Travelled alongside other parents on the same journey. Now I’m navigating “What is Down syndrome with Puberty?” I’m traveling alongside other parents. This is an emotional journey and it’s extremely valuable to walk with others who understand not just what it looks like, but what it FEELS like.
Puberty is challenging for anyone. But you tie in communication and comprehension barriers, and it’s a whole new learning experience. Right now I can best equate it to a tall-hedged maze. I can’t see where we are going, or what direction to turn in, but I know we will eventually make our way through. We walk down one aisle to find a dead end. We walk backwards, retrace our steps to where we were, and try a new direction. We hit another dead end. We walk backwards again, start over, and find ourselves further this time than before. Progress! We build on that, get a little further, find another dead end, but know we are closer. We try again.
Never, ever dismiss the power of a 12-year-old boy reading at a beginning 2nd grade level. You may never know the emotional strength and steps it took to get there. We still reach for the stars, but in a different way. At first, I thought reaching for the stars was about achieving certain goals. But somewhere along the way I found the real stars are where we make true emotional connections along this mazy path.
Stories of Wil, my son, who has Down syndrome 