01 June 2009

Why Does He Need Therapy?

[A bit of a lengthy post - make sure you have a few extra spare minutes]

We recently changed venues for Sheridan's water therapy. We're now in a small outdoor pool at a local swim school. So, when Sheridan is in the water working with PT, two other children are in the same pool learning to swim with their personal instructors.

A young girl (okay, I'm really bad at judging kiddos' ages, but I'm gonna go out on a limb and say she is about 5 years old) was really focused on Sheridan and kept asking her swim teacher, "Why is he in therapy?" She was so interested in what Sheridan was doing, she wasn't focused on what she was supposed to be doing during her lesson (I, personally, think that is totally understandable - Sheridan is mighty cute in his baby speedos!).

Let's take a moment to acknowledge something: why exactly the swim instructors felt they had the right to disclose personal, confidential information about somebody (who isn't even their client!) is beyond me. But they clearly felt it was okay to announce to everyone in the pool that Sheridan is "in therapy." Truthfully, although I value privacy (so why do I blog?!), Gary and I are very open, forthcoming, and proud (weird, huh?) of Sheridan's diagnosis (that proud part is a whole other post for a later time). Here's my aside's point: although I think most parents would have been (rightfully) upset that strangers were disclosing confidential, personal information to other complete strangers, I wasn't mad at all. I would have preferred to have been given the chance to approve of this action (I think it's just simply respectful and courteous), but honestly I didn't even bat an eye - if any of the parents/children had asked, I would have gladly told them that Sheridan has DS (or is it Ds... I see it so many different ways). Alas, my aside is over...

Now Back to My Mission

While the young girl (let's call her YG - I know I'm really not creative with these pseudonyms) was in the water, I just let her instructor handle it. I didn't want to interrupt their lesson and you could tell he was pretty annoyed that YG wasn't paying attention to her lesson.

When she got out of the water almost 30 minutes later, she continued to ask her mother over and over, "Why does he need therapy?" and "Why does he keep doing that?" (I think she was referring to Sheridan's occasional tongue thrust - she probably wanted to know why he was sticking his tongue out so often, but as you'll see from the progression of this story I never had the opportunity to find out exactly what she wanted to know).

I politely waited to see how YG's mother would handle this. After all, YG was asking her mother. Not me. I respect that. But oddly, YG's mother just started hurrying her (e.g., "hurry and dry off" and "let's go, let's go, hurry"). She never once even acknowledged her daughter's questions. Hmmmm. Ok.

YG turned to me in the middle of all this hurrying and asked, "Why does he keep doing that?" (Again, I don't know what "that" is). She caught me off gaurd because I was intently watching Sheridan in the pool - um, did I mention how flippin' cute he is?

So, YG caught me off gaurd... I just didn't hear her question (at least, it didn't register until a moment later). I looked at her and said, "What did you ask me, Sweetheart?" She repeated her question while her mother looked even more hurried and was trying to talk over YG so they could leave. I asked YG for clarification, "Why does he keep doing what?" I genuinely wanted to know, and wanted to answer her question.

"Okay, time to go," said YG's mother quite loudly, effectively ending the conversation. She scooped up YG and off they went. Hmmm. Weird.

It was plainly obvious that YG's mom was nervous about this innocent interaction. What was puzzling to me was that she appeared to be more than nervous; she appeared to be very uncomfortable. I couldn't figure out why she was so uncomfortable with the subject of children with special needs. Why she really didn't want her daughter to talk to me about it. I really could not wrap my head around that. Then, a few days later, it dawned on me:

She probably wasn't uncomfortable, and probably wasn't trying to prevent her daughter from getting the information she clearly wanted... the mom was likely nervous that it was making ME uncomfortable. It was probably the natural reaction all parents have when their children say or ask something potentially embarrassing. I dunno. But I decided to give YG's mom the benefit of the doubt...

Fast Forward One Week

YG, bless her little heart, repeatedly asked her swim instructor and mother "Why is he in therapy?" throughout her entire swim lesson. I think her mom realized that she couldn't run away this time...

Again, I waited patiently. YG, after getting out of the pool, was asking her mother, not me (and YG's mother just kept saying, "because" - the answer ALL children rightfully hate). But this time I listened so I would be ready to asnwer any question she might ask me. And then it happened.

YG: Why does he need therapy?

Me: You know how you need help to learn how to swim?

YG: Yeah.

Me: Well, he needs help to learn how to do things, too. Just like it's hard for you to do the butterfly stroke right now, with practice, you'll be really good at it. He needs lots of practice, too. Some things are just a little bit harder for him, so he needs to work on them, and she [pointing to PT] helps him.
[Note: YG is currently struggling to learn the butterfly stroke, so I took advantage of the analogy]

YG: But why?

YG's Mother: Because he has Down Syndrome... [she looks at me and asks, "he has Down Syndrome, right?"]

Okay... I have to say I was a bit surprised the mom said that. First, most people, unless they have had experience with a person with Down Syndrome, don't recognize that Sheridan has DS. Second, it was really weird that all of a sudden she was down (no pun intended) with the conversation. But, I welcomed it.

I confirmed his diagnosis, and YG's mom said again, "He has Down Syndrome, so he needs therapy to help him" - a bit vague, but I'll take it!

There I was, ready to answer more questions. Ready to use this as an opportunity to educate both the young and middle-aged. Ready to use our amazing experience with Sheridan to help reduce the stigma around DS.

And Then the Stigma Reared Its Ugly Little (Big!) Head

YG's mother went on to say a number of things, just talking to her daughter about children with DS. Most of it was difficult for me to hear because she was talking so quietly at a relatively loud outdoor pool, but the few things I heard made me a bit uneasy (e.g., "can't do things on their own") - but remember, I couldn't hear her well so I'm not sure exactly what she told her daughter. At one point YG's mom looked at me and said,

"She's just not familiar with Down Syndrome. She was in special ed for a while and they didn't have any Downs kids. Well, maybe they did but they kept them all separate. You know, they need to be kept separate in school. And maybe they had their own recess and everything because it's hard for them to run with their walkers."

Okay. That's a stereotype you don't hear every day.

Again, I was caught off guard here. Clearly the mom had some experience with Down Syndrome - she must know somebody, or at least seen somebody, with DS who used a walker. How else would that be her "image" of DS?

I have to admit, I froze a bit. Was this a battle I wanted to fight? Especially because we're at the pool every week together? Or should I pick this battle precisely because we'll be at the pool together (more importantly, our children will be at the pool together)? I decided that her battle was NOT one I wanted to pursue. But that I absolutely wanted to make sure that YG had an accurate understanding of life with Down Syndrome, and Sheridan was the best person to teach her that, not me.

Before I could continue my conversation with YG, she was once again whisked off by her mother.

At our last water therapy session, YG didn't ask any more questions. I think I missed my window of opportunity.

But oddly enough her mother now thinks we're pals and she made sure to explain to me that YG was in special ed "until we realized she was gifted and that's why she was different" and then proceeded to tell me, "You just never know how things will work out for your son, he might not, you know..." [at this point she used her index finger to draw circles next to her ear, like you do for "crazy"]. "He might be able to do some normal things."


Her misperceptions deeply saddened me. But it was a good wake up call, nonetheless. I know the stigma that exists. That Sheridan must fight that stigma as he grows up, every step of the way. Gary and I will certainly stand by his side, and most certainly we'll blaze a trail.

To some degree, her point is well taken - we can't yet know what Sheridan's capabilities will be in the future. But we do know that he is currently: beautiful, silly, funny, clever, outgoing (but does experience stranger danger on occasion!), sweet, tender, loving... and that Sheridan brings smiles, warmth, love, and PURE JOY to those who are enriched by having him in their lives.

Need proof? Here's a reminder...


  1. Uhhh - I wrote nice (long) reply here, but now I don't see it. So this followup is just a test.

  2. So apparently my first comment was lost. I'll try my best to recreate it:

    That is a really strong post. Really strong. What you describe is my nightmare scenario, because it has not yet happened to me and I know it is coming soon. When it happens, it will most likely be sparked by ignorance or a just poor choice of words. And unfortunately the person who lights this fire will be tapping directly into my soul. I'm not sure how I will handle this, but I hope I can do it as gracefully as you did. I know you look back and wish you had done it better, but you did fine. I'm sure this is the sort of thing we will all learn to master with time. I'm adding you to my links page on Down Town, and I'm linking to you from my blog. Hope that's okay. Thanks for finding me.

  3. Wow, Lisa, that's even a tough post to read! I'm so proud of you trying to reach out and educate the misperceptions. I'm shocked at the mother's total lack of sensitivity. Sheridan is totally gifted as well, maybe just not the same way as their daughter. I've not had an interaction such as that. I think you're handling it very well. Hopefully over time the mom and daughter will see Sheridan for who he is and take the time to learn more about Ds together. (It's "Ds" because the syndrome part isn't capitalized, but DS if fine, too). I have a couple cute kids' books on Ds I'll show you tomorrow that maybe you could share w/ the mom & daughter.

  4. Alright.

    At firt I was giving that mom the benefit of the doubt but now I'm peeved. I'm sorry you had to witness FIRSTHAND, those stereotypes. That's truly a tough pill to swallow. I applaud you for keeping your cool but that little "crazy" pointer finger circle thing would have set me right over the edge.

    I think you gave YG a great analogy and I am sure that helped her understand so much more than anything her mother may have said to her.

    Does sheridan really have baby speedos!? How dang cute is that?!

    Great pics! And yes, you are SO right...Sheridan is Amazing and will educate so many people throughout his journey that will be greatly touched by his wonderful-ness!

    oh and p.s.- I was totally laughing at that "stranger danger" comment! Too funny ;)

  5. Wow. Thank you so much for sharing that experience. I continue to be impressed with moms like you who are able to handle things so gracefully. My first year was more CF-ish, if you know what I mean. I wasn't the proud advocate I am today. Geez, I was a mess and probably would have erupted into a fit of tears at YG's mom's insensitivity.

    I wish I could bring M up to the pool so that she could jump off the side, into the water, laugh, say hiiiii, wave, and (gasp) walk over to the mom and promptly go through her purse. Cause that's how M rolls.

  6. Oh Lisa, thank you for sharing this post as difficult as it must have been to go through. You, Gary and Sheridan are amazing and I am so thrilled to have you as a friend and advocate for our children. You and your family will change the world...one darling Sheridan smile at a time!!!!

  7. Wow. I'm just blown away. I'm amazed you have the grace to sit and listen to that drivel without popping that lady. You guys will be breaking down some walls for sure.