I think one of the big questions I had when Ben was born was "What will life be like when he is older?" and more specifically, "What will he be like when he is older?" To be honest, there was one day where I sat by myself and watched a bunch of awareness videos on youtube and just cried. And cried some more.
Some friends asked questions or made comments:
"Ben doesn't look like he has Down syndrome. I think he's got a mild case."
"Do you know how high functioning he will be?" or
"What will he be able to do?"
For the record, most instances of Down syndrome are not "mild" - you either have it or you don't. There are 47 chromosomes in every cell of Ben's body. Nondisjunction Trisomy 21 (which is what Ben has) accounts for 95% of cases. One percent have Mosaic Down syndrome, which means that the 47th chromosome is not present in every cell.
The thing is, I don't know what Ben will be able to do. My expectations are high. Emmett and I were talking last night, and I said that I don't anticipate that Ben will live at home. He might - and I will gladly keep him with us if this is best place for him to be, but I also expect him to have a life - interests, activities, a job, friends. I know that Ben's life will be different than Evan and Corrie's, but right now he's only 14 months old ... how am I supposed to know what he'll be doing 20 years from now? Does anyone know what their kids will be doing in 20 years?
I do know that people with Down syndrome can read, run, jump, do math, ski, swim, dance, act and more. I am looking forward to seeing who Ben becomes.
One of the things that has helped me feel better about Ben's future are the glimpses I have of other children and adults with Down syndrome. Here are some great blogs to check out:
The Bates Motel - This was one of the first blogs I found about an older child, and this was one of the first posts. How beautiful is Samantha?!? She's in first grade now, and she's reading and doing homework and loving life. (Although my second grader doesn't really equate homework with loving life - not sure if Sammi would either).
Confessions of the Chromosomally Enhanced - This blogger has two connections to Down syndrome. Her older sister has Down syndrome, and she and her husband adopted a daughter with Down syndrome. I have loved reading stories about Aunt Leanne and Josie. I can't pick just one to link to, so I will send you to the list of favorite Leanne stories. And I love seeing how Josie and her younger sister interact.
The Ordinary Life of an Extraordinary Girl -Gary, the writer of this blog is a mom of three kids. Her middle child, Alex, is 19 years old and has Down syndrome. Alex is a neat person - she's a skilled athlete and enjoys acting in school shows. Gary writes about Alex's life now, but she also gives some perspective on her experience parenting Alex through elementary, middle and high school. Gary has also written a book called From Grief to Celebration: How One Family Learned to Embrace the Gift of Down Syndrome. It's on sale on the Kindle this month - only $3.99! I just ordered it and I love it so far. I'll try to post a book review soon.
There are so many good blogs out there, but these are three of my favorites.
Aw, thank you, Deborah!! I like to quote Samantha's geneticist when this topic comes up. She said that when parents ask her "when will we know what my child will be capable of doing?" she responds with "at the end of his/her life." In other words, there's no cut-off, no end to possibility. They will continue to learn and grow, and their capabilities will continue to change. Keep your expectations high, but keep them reasonable. The sky's the limit!
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