Yesterday I attended a program that included a panel of graduates of Leo’s school. They were all in the early to mid twenties. The purpose of the panel was for parents of current students to get an idea of what their son or daughter could go on to do after finishing school.
My first thought was would it really apply to Leo, since he is coming of age in a different climate than even ten years ago. The therapies are a bit different and also I think early intervention is better now. I haven’t had a lot of interaction with older kids/young adults with Down syndrome, so I was pretty curious. It’s almost impossible for me to look at Leo now and think about him as a teenager or even an adult (as I’m sure it is for most parents, DS or not). He is almost universally adored by everyone he meets (the nurses came out from all the offices this morning to get hugs at the pediatrician’s office this morning). But I’ve often wondered how people will look at him when he’s older. Somehow adults with DS don’t seem to hold the same charm that the babies and children do.
The range of abilities struck me. One young woman works at a city office where does she does clerical work (a job held by many people without DS). Another volunteers at a school. Another works for a big restaurant chain. For the most part their speaking skills were excellent. One young woman had an incredible vocabulary. And I should add that it’s not easy to get up and talk in front of twenty or so adults. In terms of public speaking, that’s one thing that is really important to me—I want Leo to be understood. I hate the idea of people not knowing what he’s saying and having them chalk it up to the fact that he’s just not smart. What hit me, and kind of freaked me out is how much higher functioning the girls were than the boys. But then I think about how much more verbal women are than men in general (in the non-DS population) and I think maybe it’s just related to that? One young man was having a hard time remembering where he worked and one of the teachers had to coach him. That was a little uncomfortable, but I think he was also extremely nervous. It was very sweet how the girls were passing around their certificates of achievement; photos of them ice skating and doing gymnastics. The young woman who works at the city office had a framed letter from someone in the community who she had worked with. It went on and on about how in all his years doing work with the city he had never encountered anyone with a better work ethic. It was wonderful. And the young man with the poor diction? He told us all about his family and his eyes lit up when he spoke of his nephew. “He loves me a lot,” he said. “I make him laugh.”
After the panel was over I pulled one of Leo’s teachers aside. I apologized for my ignorance but told her I couldn’t help but notice the stark difference between the boys and the girls and asked her if she felt like girls tend to be higher functioning. She said there is no rule and she went on to tell me she thought Leo was very high. Actually she started to and then she stopped herself, almost like she realized she shouldn’t be saying that to me. False hope? Who knows but it made me feel good.
When Leo was born, I mourned the baby I thought I was having. I mourned all the things Leo wouldn’t do. Leo wouldn’t go to medical school or be a lawyer or go to Harvard. But the joke is, who will? Certainly not me! In the end, I want Leo to be happy. And I want him to feel fulfilled. I want him to have a community. I want him to feel like he’s participating in life. These young people all seemed to be doing those things. I want Leo to be high functioning but I also fear that with high functioning comes the curse of knowing you are different. This wasn’t discussed at the panel (obviously), but it’s a conversation I would love to have with some of the parents of the older children.
Pictured above, a really creepy looking crystal ball. I’m glad I don’t have one. The future is far away and for now, that’s fine by me.
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