Ugh, Mom! Entering Puberty with Down Syndrome

F5450D9B-B30D-4378-B101-FF9D350C65CDWil is closing in on 13 years old. His birthday is just over a month away. His voice is getting deeper, he is growing by the day, and his appetite is hearty–as I type this he is eating two ham and cheese sandwiches for breakfast. He’s a huge Luke Bryan fan and knows every word to every one of his songs (I have to remind him not to use country favorite words like “beer” at school). He’s also feeling the urges that 13-year-old boys feel. Wil can get fixated on certain girls. He is affectionate by nature, but now that he is going through puberty he is starting to hug too hard and too long. We are working on boundaries, but are not there yet. It’s been quite a challenge. When it gets to a point that I need to separate him, he feels sad, hurt and upset. He’ll flee the scene and then it becomes a safety issue. We are definitely entering a new era with Wil that I need an education in.

I found some helpful podcasts in searching the web. I’ve also talked to some friends in our Down syndrome support group. There is no one concrete answer. Just like anything with our kids, what works one day may very well not work the next. The fact that there is always a lot of learning along the way is nothing new. But what I’m learning is very new to me. With Katherine and Elizabeth, we talked about their changing bodies in just a few conversations. We went through some American Girl books, and they also had health education at school. When they offered this in Wil’s grade, I opted him out because it would have fully confused him. Though puberty is a very natural part of growing up, Wil’s body is ahead of his understanding. I was completely blind to how complicated this would be.

When Wil was a baby, I had so many big questions on how to explain he had Down syndrome to his sisters. It was a complicated situation as the twins are only 20 months older than Wil. I didn’t want them to overhear this from someone else and be confused and or hurt. I wanted them to know all of the facts. And yet, they were so young. Whenever I tried to give them an explanation, it went right over their heads. So, I searched the web for answers. I watched podcasts. I talked to friends in our support group. It was clear that what worked for one person did not always work for another. It’s a day-to-day, very individualist type of answer that you learn over time.

I bought the book called “Let’s Paint the Octopus Red” and the girls and I read it multiple times. They enjoyed the book but never put together the connection with their brother. Though it is a great book, and I recommend it to this day, Katherine and Elizabeth saw Wil as Wil. He just did what he did and there was no reason to question why. Until one summer day, shortly after Katherine and Elizabeth had completed Kindergarten.

We went to pick up Wil at the school. As we were walking across the parking lot, Elizabeth asked, “Mom, why is Wil in school now? I didn’t have school the summer before Kindergarten.”

I explained Wil needed a little extra help to do certain things so that’s why he needed more schooling. That was all she needed. After I said that, she was satisfied and had already moved on to something else. The time had arrived on its own. When Elizabeth reached a stage where she could compare her progress with Wil’s, she began to see his differences. I have no idea if any of the reading or explaining I did before had made any difference, but I did learn one big thing. No matter how prepared you are, you can’t force time. Your preparation will make you ready when the time does come, but some things must unfold in their own way.

So now, I’m reading some of the puberty books with Wil. I’m listening to certain podcasts on the web. I’m hoping some of it is sinking in. But there is no single answer as how to handle this. I’m taking it day by day. Piece by piece. Some situations are easy to give time. But some are not, such as situations where Wil becomes fixated. He doesn’t understand his feelings and he is simply reacting to them. Like most of the things Wil learns, it takes lots and lots of repetition. Then one day, seemingly out of nowhere, it all sinks in, he gets it, and we are moving on. But right now we are in the middle, so I’m taking lots of deep breaths and being prepared to leave certain situations early.

The other day, I was having a discussion with him on what is done in private and what is done in public. He looked at the picture in the book, then he looked up at me and said, “Ugh, Mom!” Then we both started cracking up. This may be a slow, unfolding learning process, but leave it to Wil to some it up in 2 words.


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