31 for 21: Day 11, FAIL, Try Again

Apple picking and pumpkin patching with the crew yesterday. It was a spectacular, perfect fall day and every year this particular outing gets a little easier and a little more, dare I say, fun?

OY. I am not doing well at this 31 for 21 this year. I had such high hopes for myself.

Let's go for some bullets, shall we?


-Leo is still difficult to understand speech-wise. I won't lie when I say I would have thought by now, at age 11, things would be clearer. I'm guessing this where we are for him and that breaks my heart a little because he has SO much to say. I suppose I should be grateful for that at least, right? But he's likely always going to be tricky (for strangers and people who don't know him well--most of the time his family/friends/teachers do OK but even we are still perplexed and yes, frustrated). However. I love that his speech is getting more advanced and interesting and mature. This morning for example, he busts out with "Speaking of apple bread..." (We were discussing what we could make with all the apples we picked.) I mean, "speaking of...?" Just love it.

-This week was a doozy for Ellie. It feels like the bloom is falling off the rose on the new school year: Apparently third grade is a "big deal" (this is news to me as this is my first time going through third grade for a 100 percent gen ed kid). Multiplication, long division, more and more standardized testing. The list goes on and on. There has been a lot of talk of feeling "pressurized" (Ellie's words) and worry about the speed at which math is going. I checked in with her teacher and she's doing fine, so this is likely self-imposed stress (she's hard on herself and a bit of a perfectionist. Hmm. No CLUE where she gets that, cough cough). Every night after Ellie finishes her homework (math worksheets and language arts and spelling) she does her computer homework for 30 minutes. One evening this week I waxed nostalgic about how after homework Ellie used to draw. "I don't have time for that anymore," she announced, matter-of-factly. Geez, kid. Just stab me in the heart, why don't you?

-I met a woman yesterday at Leo's soccer yesterday who has a 20-year old daughter with Down syndrome (she's in the same special needs soccer program as Leo). It's bizarre to think about the fact that I actually don't know anyone with an adult child with Down syndrome. How did that happen?

As we chatted, we realized our children shared a few teachers, so that was a fun little trip down memory lane. There are a few younger children with Down syndrome in the soccer program too and as we watched their antics we shared a few funny stories of our trials with Impossible Young Children with Down ("When she was little, I never sat down!" this mom recalled). Yup, sounds familiar. I tried to take off my journalist hat and just act like a normal, friendly mom (in these situations where I am starved for information I tend to ask a lot of questions) but I was dying to know: What's high school like for her? Does she have friends? (Answer: Yes, tons. Or at least, everyone seems to know her. Huh. That sounds familiar. How much independence does she have? Does she go home after school by herself? The answer to the last one was no, she still has someone with her at home unless it's just for a few minutes. That one was a little tough for me to swallow.

Her daughter is in her last year of high school and her mom is now looking at programs for next year. In her words: "You're pretty much on your own." The future. I can't can't even go there. But I know the drill. I opened up Facebook this morning and there was one of those sob inducing "Memory" pictures from five years ago: Six year old Leo and three year old Ellie at the SAME apple farm we went to yesterday. Um. EXCUSE me? Five years?

Apple picking, October 2010.

And where were the twins? Oh yeah, not BORN yet (I was actually pregnant the day this picture was taken but didn't know it). And the future that mom spoke about yesterday? It will be here before we know it. But for now I'll go back to my cozy spot with my head resting firmly in the sand.

The Pickle We're In

So there has been some talk about the video I posted yesterday, of the young man with Down syndrome on the basketball team in Maine.

I guess when I said get your tissues, I wasn’t kidding. I didn’t say much about the video, mostly because when I see things like that, I’m not sure what to think. I think I’m just always a little hungry for glimpses into the future, of what Leo will look like, be like, act like (which I know is absurd, as if just because someone else has Down syndrome Leo will be like that person).

These kinds of videos usually make me cry (to be fair, it doesn’t take much). And I think they make me cry for a lot of different reasons. They make me cry because they make me both happy and sad. This particular video made me happy because the kid looked genuinely happy to be doing what he was doing (not really fair to judge him based on what I saw but he seemed pretty enthusiastic out there on the court and would he be playing with such intensity if he didn’t want to be there?).

It also made me happy because I thought it was pretty great that the kids on his team and the kids at the school were being exposed to this young man. To his dedication and tenacity. It did bug me that he’d been on the team for nine years filling water bottles and this was his first time on the court at a game? Really? Had he expressed an interest to play? Was there a reason he hadn’t been allowed? But also, as a journalist myself, I know about sloppy reporting. It is completely possible that some “facts” had been overlooked to make the story more convenient and “wrapped up in a bow.” Would it have been as compelling if it had not been the first time he had played? So we may never know the full story.

So the water bottle and the nine years part made me sad. And of course it made me sad that this kid couldn’t play basketball and score a basket and just be like everyone else, that it had to be some grand, big thing that he got to play in a game and all because he has Down syndrome.

Oh and throw in the dad who had just had a stroke who almost didn’t make it to his kid’s game?

I still don’t know. And I totally get what Amy says about the prom queens/kings. I want our kids to be included and recognized, but not as charity cases. I want Leo to fit in because he does, not because someone feels sorry for him. But let’s be honest. Leo is never going to be the Cool Kid. At least not in that way. I don't doubt that he will have friends and be well-liked. I'm not saying he's going to be some kind of pariah just because he has Down syndrome. But he's not going to be the effortlessly cool one, the one who always wears the right thing, says the right, dates the right person, drives the right car...but guess, what? Neither was I! I led a pathetic high school life on the edge of cool, friends with cool people but never an A-lister myself. I starved myself. I let people use me. I was the worst kind of not cool person: the one who cared that she wasn’t cool. I don’t wish this on anyone, especially my own kids. That’s part of why I dread the teen years, Down syndrome or not. Because I know from experience you don’t need that extra chromosome to not be cool.

Anyway, I am not being all that articulate here, partly because I am a bit all over the map on this subject (if you couldn’t tell). I think about how when Leo was born (as has been the experience of many other parents reading this), of all the well-meaning people who told me about the “always smiling young man (with Down syndrome, of course!) who works at McDonald’s greeting customers and bussing tables.” Those stories made me want to crawl into a hole and die. Could my son aim just a little higher? Please? But then sometimes I get mad at myself for thinking thoughts like this. Leo is a really friendly person. He also loves to help. Maybe he would love a job like that at McDonald’s? And who I am to say it isn’t good enough? (to be fair, he is only 4 ½ so it’s fair to say his “interests,” being “friendly” and “helpful” might change by the time he seeks gainful employment).

I want Leo to be happy. I want Leo to feel included and recognized. I don’t want that inclusion to be fake, but it may have to be sometimes. But what I don’t want is for him to know that it’s fake. It's almost like I'm saying I want him to be smart but I don't want him to be too smart. And this puts us in, what my mother used to refer to as “a bit of a pickle."

A Big Question Mark

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.