Last night Erin had the kids while I went to a parent volunteer group meeting (we mostly work on fund raising at Leo's school). According to Erin, Leo was an angel and helped her with Ellie, getting her diaper and helping dress her. He even took his medicine without a fuss (disguised in yogurt smoothie, but still).
The thing about Leo (and this never ceases to amaze me) is his default setting is Good Mood. Seriously. He is just for the most part, pretty happy. Not to further all those "they're such happy children" notions but really, if given the right set of circumstances, Leo is more than content. And I'm not talking ice cream sundaes and no school. I'm talking a bowl of oatmeal and his little sister sitting next to him. I'm talking a basketball with hardly any air in it and a hoop to (try) and throw that flat ball into. I'm talking a beloved stuffed buffalo in his lap, a snack bag of Veggy Booty and a window rolled down for a car ride. Give him any of these scenarios and Leo will be downright celebratory. And I will go ahead and say it: I don't think you can say that about most typical children.
This morning on the drive to school, Leo was calling to me. I looked in the rear view mirror to see what the fuss was about. He simply wanted to show me that he and Ellie were holding hands. Ellie thought it was fun too as she was all smiles. Then I asked Leo his most loved question: Leo, who's your favorite person? The answer is always the same: Ellie!
At the meeting I attended last night, one of the coordinators for the school's early intervention program brought up a dilemma she is dealing with and asked for help. Apparently this year they have one baby starting E.I. Yup, that's it. One. I don't know what the usual number is but I got the feeling it was a lot more. The coordinator went on to say she's going to have to think about changing her "model." I think in English that means think about how to attract kids that don't just have Down syndrome. Leo's school is about 95 percent children with Down syndrome-the other five percent have some other syndromes or issues. I don't know if enrollment in the school is down but it's definitely not a large school, and children are bussed from as far as over an hour away. The mom sitting next to me happens to be a nurse at the local hospital. She chimed in with the fact that in the last year one baby has been born with Down syndrome at her hospital. Apparently this is also a drop from the usual number.
You don't have to be a genius (sorry) to realize there is something going on here. I'm not going to get into the whole issue of prenatal testing here because that's not what this is about. Also, it would make me a hypocrite. But sitting in that room last night, a room full of moms of children with Down syndrome, I was struck. I know we all have different stories of how we came to that room. Some of us knew long before they handed us our little person, swaddled like a burrito, what we were getting ourselves into. Others (like me) were blindsided. But still, here we are. And it's hard to believe that there may come a time in the not too distant future (if it's not already here) that there will be far fewer of these children that we are all working so hard for.
One of the moms chimed in: "I was watching my daughter with her P.T. the other day and I just looked at her therapist and said "Who wouldn't want a child like this?"
Well, I can think of a lot of people, actually. But I also know exactly what she means.
3 comments:
This is Joyce. Very interesting about the one baby for EI this year. It does make me pause and wonder the reason. Your little boy looks so adorable in his snow outfit.
Our friends who have a 4 year old daughter who has Down Syndrome recently came to visit us from out of town. After they left, I was telling another friend about their visit and my friend, who is from Ireland, said in Ireland you see a lot more children with Down Syndrome. And then she paused and said, "because there's no abortion." It's a sobering thought.
Thank you for finding the shades of gray in all of this and writing about it with such grace, which isn't easy!
I am constantly apologizing to friends and family for Sophie's behavior and often they look at me like I'm crazy and sometimes I know it's because I'm the only one who noticed she was under the table or had her pants off or whatever.
Speaking of which, guess what body part my 5 year old niece long ago named "Bobbi" (yes, with an i, so tacky!)???
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