Down Syndrome Out and About


I know Down Syndrome Awareness Month is over, but I have to jot down a brief encounter I had yesterday.

Joey had a Little League game, and it was at a sports park where there are multiple ball fields and a playground, and the whole thing is adjacent to an elementary school.  So I’m sitting in the stands with Scarlett watching the game, Michael is helping coach out on the field, and Daisy, Annabelle and Lilah are running around.  I craned my head around to make sure I could still see them, and I spot a little boy and my radar suddenly starts doing its thing: the little boy had Down syndrome – I could tell from 50 feet away.  Funny how once you have a kid with Down syndrome, you have a nose for other kids with Down syndrome.

Now I’m visually stalking him.  He’s with a young girl – his sister, I assume.  They must belong to a family watching one of the other ball games going on.  They scamper off to the playground, which is just a few yards away from the stands I’m sitting in.  Well, my girls are playing on the playground, so why shouldn’t I sidle on over there, right?  Right.  So I climb down from the bleachers with baby in hand and casually (ha!) go stand at the edge of the playground.  Yep, he’s definitely got Down syndrome.  He and his sister are playing tag.  I catch her eye and say, “Is that your brother?”  “Yes,” she says.  “Does he have Down syndrome?” I ask (heart pounding a little hard, as I realize this could come across as very rude and forward).  She stammers a little.  “Yes,” she says, and I catch a note of defensiveness in her voice.  And why not?  Who is this woman asking questions about her brother?  “I have a little boy who has Down syndrome, too,” I tell her.  “Yeah!  His name’s Finn and he’s four!” one of my girls laughs, as if to say “Down syndrome, schmown schmyndrome!  No big deal!”  I was sorry that I had left Finn at home with Kevin.  I asked her how old he was (he was busy running around) and she told me he was 8.  So the same age as my twins (he looked quite a bit younger, not surprisingly).  A minute later, he took off running.  His sister chased after him, but he kept on going, and soon he disappeared onto the school grounds.  Then there was their mom giving chase.  I kept watching to make sure they caught up with him, and sure enough, several minutes later, here they came, Mom holding him by the hand.  I smiled at her as she passed, hoping that my smile conveyed . . . something, I don’t know what.  Just not that I was some jerk rubbernecking.

And I also kept thinking, “Eight years old, and he still bolts.  Do they ever outgrow that?”  It’s the very reason Finn was at home with Kevin – because he takes off, and I’m afraid I won’t be able to keep track of him at a ballgame when I have the baby to manage as well.

I wish I knew how to approach other parents of kids with Down syndrome.  After all this time, I still don’t know how.  But the urge to connect when these encounters arise is still strong for me.

Sometimes I wonder  if Finn and I have ever been out and about and unknowingly been the object of some other mom’s desire to connect.

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10 Comments on “Down Syndrome Out and About”

  1. Alyson
    November 6, 2012 at 1:23 pm #

    Oh I am sure you have been! It is the same with Autism,except you don’t always have a definitive answer if the child is on the spectrum. Sometimes with really young kids I am not sure if the parent realizes yet:/ The bolting still happens with Cullen unfortunately. However it’s not as constant as it was when he was 3&4. The bolting makes it tough when you have other children and I only brought Cullen to one baseball game this year and we didn’t last long. Bolting is definitely at the top of my short list of things I wish would change.

  2. Maddy
    November 6, 2012 at 4:31 pm #

    The fact that the young girl even communicated with you, had me gasping for breath. I tell my children to respond to no one if it is someone they do not know.

    To be honest, you meant no harm but that doesn’t mean that there isn’t someone out there that has the same motive as you. I guess, I as a parent should not be so on the defensive when a stranger approaches my children to ask a question, but I often find myself being on the defensive. It’s sad to think I have to be like that and the person may mean absolutely no harm at all.

    The World we live in makes us like this, and it is soo sad. I know totally off the subject, but that was my first thought when I read your post.

    • Lisa
      November 6, 2012 at 4:49 pm #

      You’re right, and I hadn’t looked at it that way. Food for thought.

  3. CJ
    November 6, 2012 at 9:08 pm #

    We need our own “gang sign”.

    • Lisa
      November 6, 2012 at 9:37 pm #

      Totally.

  4. Holly F.
    November 6, 2012 at 9:18 pm #

    I know what you mean about the radar and the urge to connect.

    I approach the parents the same way you approached the sister. I’ve always had favorable outcomes. 🙂

    On our recent Disney World vacation, I approached more than 10 families…it gets easier each time you do it.

  5. Carolyn Gabriel
    November 6, 2012 at 10:42 pm #

    I really admire the way that you can express your feelings. My DS son is 52. I also ‘visually stalk’ people I see with DS, speak to them, speak to their parents, and their siblings, who are special too. Sometimes if I cannot make eye contact I have to gracefully let go ofthe opportunity to identify, which doesn’t happen often. Thank you for your posts, I very much enjoy them. As the mother of a middle aged person with DS, I must tell you that nothing that my husband and I ever worried about happened. We moved with Chris, our son, to a condo last year. I had apprehensions, bsut we landed among really informed, educated nice people as close neighbors. Chris has his own front door key. When he comes in from work, he can let himself in, says “all by myself”. He doesn’t have to worry if I am taking a nap. Sometimes I stand on the other side of the door and ‘coach’, say “use your key”. Sometimes a neighbor will stop and help him, that’s okay too. Sincere best wishes to you and your family. You are all special people. Carolyn Gabriel carolynhillgabriel@yahoo.com Carolyn Gene Gabriel on Facebook

    ________________________________

  6. Jaida
    November 7, 2012 at 1:46 am #

    I guess one other point to think about when approaching a sibling vs. a parent is whether or not they’ve discussed Down syndrome in the family. I would imagine every family has a different age/point/maturity level at which they discuss it with other children.

    I also feel that urge to connect. It’s so much easier here in Minnesota, partly because people are so friendly in general (and much less suspicious about your motives) and also because there are SO many more people here with Ds compared to SoCal. Haven’t figured out why yet…I know this state is known for their progressive social policies, but I also wonder whether more religious states have a higher percentage of the population with Ds (less likelihood to terminate pregnancies). Whatever the reason, I would estimate I have 3-4 encounters in an average week where I at the very least see a person with Ds.

    ANYWAY, I find that asking the parent how old the child is is a good window in – at that point I can say that I have a child with Down syndrome who is x years old. Sometimes, you don’t even have to mention it. You could make an unrelated observation about the kid and see whether the parent chooses to bring it up. I do, because I’m proud of Pacey and I always want to have the opportunity to make a connection.

    As far as the bolting goes, it is discouraging but remember that even if Finn is still bolting at age 8, you’ll have experience in dealing with it. You’ll know where he’s most likely to do it, and avoid the places where a run poses a threat. Your other kids will almost certainly be even more inclined to stay safe and close because they will know you need to be available to retrieve Finn if necessary (I see this with B, I can tell her that I need her to stay close so I can stick with Pacey and she will). Mostly, just remember that it won’t be any old 8-yo with a tendency to run…it will be your boy and you’ll know how to deal.

    Sorry for the novel 🙂

    • Lisa
      November 7, 2012 at 1:53 am #

      I always appreciate your insight, Jaida 🙂

  7. Francisca
    December 31, 2012 at 8:42 pm #

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