More evidence of why we need a secret handshake, or something…

Yesterday, we went shopping at Costco. The two little boys were in the cart and Carter was pushing it around a bit too fast, steering eratically. As I was trying to prevent mishap, I looked up and realized we’d narrowly avoided bumping into a teenaged boy with Down syndrome.

Oh, how I wanted to hug that boy! And then say something totally inappropriate, like, “This is my son AVERY! He has DOWN SYNDROME, TOO!”

I can tell it’s going to be hard on my kids to have me for a mother.

To my credit, I resisted. I merely smiled at the boy, and apologized for our crazy cart-driving. But I saw him later, with a woman I assumed was his mother. Again, I wanted to say something. And again, I was at a loss for words.

There are days when I don’t mind talking about Down syndrome; days when I can’t get enough of “who’s your doctor” and “what therapies are you doing” and “are you going to the Buddy Walk?” Then there are other days, when I just want to be seen as a family, a mother and her sons trying to get their warehouse-store shopping done. I can’t always tell what kind of day it’s going to be, myself; how can I guess what kind of day any other mother is having?

Which is why I wish we had a secret handshake. Just a little, quiet way of recognizing each other, and offering support.

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24 thoughts on “More evidence of why we need a secret handshake, or something…

  1. I totally agree…I have found myself one time at the pool this summer wanting to chat with one of the mothers and wanting to tell her that my son has DS…so instead I just chat and have conversation with her cute little boy with DS…a subtle way to bond with a total stranger.

  2. The other day I found myself on an airplane across the aisle and down a bit from a teenage girl with DS and likely her parents. I couldn’t keep my eyes off her. Eric wasn’t with me I wished for some badge, some sign of recognition, that when they turned around and made that briefest of eye contact with me, a stranger, they’d know we had a connection. I tailed the family off the plane to get my bag, walking quickly, hoping to get close enough to ask, “What’s it like?”, when my real question would be, “What will my son be like when he’s your age/your daughter’s age?”, or, really, “Tell me my future. Tell me my child’s future. Let me look into your eyes because I believe that because of this random connection, this genetic link, that you have some omniscient knowledge of what will come in my life, in my child’s life. You are the key to my future.”

    I never got close enough to speak to any of them, and if I had, what would I have said? “My son has DS,” while smiling and nodding stupidly, as if that allowed me entry into their life, as if that gave them a window into my future.

    So instead I watched the girl, her ears plugged firmly into her iPod while looking alternately like an eager or a disinterested teenager, me dreaming of the someday when Eric might be that tall.

  3. I know what you mean! I never know how to approach someone and I always feel like maybe they don’t want to be approached. Just because we have a child w/Ds in common, doesn’t mean we have anything else in common. That’s like going up to someone and saying, “oh I also have a 4 yr old daughter with blond hair!” LOL I wish it were easier to make contact though!

  4. This happens to me all the time! I can’t tell you how often I feel like saying something to the parents or the kid, yet am always at a loss for words. My husband and I usually just say to eachother, “there’s one of jaden’s brother’s/sister’s”. That’s what we say to eachother, because honestly I feel like they are all related in one big community! There should be a secret handshake/wink/smile/nod or something!

    BTW, thanks to you, I was able to replace all of my lost blog links. You have the biggest Blog Links section. I deleted my whole blog yesterday in trying to upload a new template! Unbelievable! Anyway, thanks again. I love the picture of the raspberries, YUM!

  5. Ah yes, shame. There are cultures (Hindu? Native American? I’d have to do some research) where children and adults with physical and learning differences are considered Holy.

    Don’t know if that’s better…it’s still a way of keeping people separate from each other. But it seems a bit gentler than shame.

  6. I know what you mean. I’ve blurted stuff out before and then felt kind of weird afterwards. I think there is still a degree of shame in Japan.

  7. Oh how I wish we had one today at the hospital. I couldn’t “tell” about other kids and it was uncomfortable being in the waiting room wondering who was wondering about *us*. Sigh…

  8. I keep flipping back and forth. On the one hand I don’t like the idea that somehow I’m supposed to be a member of a club just because my daughter has DS – just because she has, does that mean I’ll necessarily have anything else in common with these other parents?

    But there are times when I also just want to reach out to other people, especially those with little ones, and say, hey, it’s ok, you’re not on your own.

  9. I am that Mom too – but, having a teenage daughter, I realize its not just being the mom of a child with DS – because I can completely MORTIFY my 14-year-old by saying something as innocent as “wasn’t that crazy weather today” to a cashier at a check-out, lol.

    I think there is kind of a secret society – sometimes someone will put their hand on my shoulder and tell me Paige is beautiful, or how lucky I am, etc., and I will feel that secret kinship that tells me that they understand how very blessed I am.

    I always feel like Down syndrome isn’t good or bad – it just is…so its as conversational as blonde hair and blue eyes for us. But, I know that some families don’t feel that way, and I need to remind myself of that sometimes when I want to embrace someone the way you did yesterday.

    I had a terrible shopping cart incident the other day:

    http://www.network54.com/Forum/244888/message/1187235544/Terrible+experience+in+Walmart+tonight

  10. I wish that we had a secret handshake too!! I found our family in a similar situation this past weekend. We went out to eat and were seated near a family with an older daughter who had DS. I kept thinking to myself – do I go up and say hi…ask if they are doing the Buddy Walk? A handshake would have been such a great solution. ๐Ÿ™‚

  11. I love it! I am so much like you in somedays I don’t want to be the VP of my local DSA. I don’t want to have to be in the know of programs and services and who’s the best therapist and stuff like that. I just want to be known as Kallie and Brittany’s mom. I want my girls to be known for their gymnastics and extracuricular activities instead of always being known as a mom of one with DS and one without. I want Brittany to be known to have a sister instead of being known as having a sister who has an aide and at times goes to a special class. *sigh* Can you tell today is one of those days I just want to have a regular life, whatever that may be! This was an awesome post and if we ever get to meet, I will certainly do a secret handshake with you! LOL

  12. Absolutely – sometimes it happens unexpectedly too – like this afternoon when I was leaving childcare and chatting to one of the other mums. In our conversation and because I was ‘in the mood’ when she headed into comparing the ages of Kit and Hannah – I said “yes they are twins – Hannah has DS and that tends to make her a bit shorter” … Mum of a lovely older child who I often see there proceeds to say totally approrpiate things and identifies herself simply by saying something like “I know, my eldest boy, he’s 6, has autism” – and even though our chat was brief – there was definitely the coded language, equivalent to your secret handshake that said, I to her and she to me ‘in the club’. Lovely post as usual. Thanks Jenifer

  13. I love the visual of this, the imagery of two moms in the crowded Costco aisle, acknowledging each other, reaching out a hand…

    I think my son drives the shopping cart like Carter. There should be a class they can take. “How to drive a shopping cart without clipping the ankles of passersby or knocking over end-aisle displays.” Sigh.

    Also, exactly what Irene said. When I look at the world through your eyes, Jennifer, I have hope. That’s a wonderful gift.

  14. you’re helping me see the world differently, and making me believe, and trust, in the goodness of people. thank you for this “little more” that you bring into my life.

  15. I agree with you completely! I’ve always wondered how others felt about it. I’m glad to know I’m not alone in wondering what to do or say!

  16. I’ve had people pass by us, and say about Aaron – what a beautiful boy. I think that’s our secret handshake. If I feel like stopping and chatting, I do…if not, I just smile and move on, feeling good about the world…

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