Tuesday, November 04, 2008

Most People Can't Tell

So, I made a major blunder today.

While waiting in line at the Post Office to pick up a package, I see a totally adorable tiny little boy with bright red hair, and big blues eyes who has Down syndrome. He is a sweet as can be, and is waving at people over his Mom's shoulder. My heart melted like butter!

After I picked up my package I went into the lobby of the Post Office, and there he was - sitting on the table while his mom was writing a note. I went over to her, and said, "I have to tell you how very gorgeous your son is - he is just adorable." She looked up and smiled and said "Thank you."

Then, I said, "I have a daughter with Down syndrome too." Her whole faced changed, and she says, "Most people can't tell he has Down syndrome."

So, what does one say to that? I floundered through, and just told her he had caught my eye because he was so cute and so sweet the way he waved at everyone. He was adorable, perfect, sweet...and he had Down syndrome - all very positive and happy qualities to me.

I asked his name, and spoke to him, he was very lively and very interested in catching my attention. Then she asked my daughter's name and when I told her, she relaxed a bit - she recognized me from the Parent Pak she got when her son was born.

We chatted a bit about his birth; he spent a bit of time in the hospital with duodenal atresia (I told her Paige had esophageal atresia, and she replied "oh, they all do." - strange...)

The timing of meeting this little boy was perfect for my blog post today, as I have been composing a post inspired by one of the moms on one of the Trisomy boards I visited, where she asked for "bits of advice" from parents of older children with T21.

I will write more on these nuggets, but here is one suggestion from an "old pro," lol.

Its so important to take away the "stigma" of Down syndrome, if you will. There is absolutely nothing wrong with your child looking like he or she has T21, and the truth is, if he or she does have it, most people will recognize some of the physical traits on your little one. These traits are no more important than hair color or eye color or any other physical feature your child may have.

My advice, for what it's worth, is to make talking about Down syndrome as easy as talking about what's for dinner - that means talking to other siblings about it, bringing it up appropriately in conversation, getting your child with T21 used to the term Down syndrome, etc. No sibling is too young to understand - Dakotah was just 3 when I was prenatally diagnosed - and we played the "same & different" game with her - she had the same color eyes as her dad, but different than me, the same hair as me, but different than dad, the baby had Down syndrome, she did not.

People will approach you and ask, and you may feel offended or caught off guard, but having had a child with Ds for 11 years, I can tell you that 99% of the interaction I have had from strangers has been very positive - lots of people have shared stories about people they know with T21 with me, many, many people have stopped me just to admire Paige.

There is nothing wrong with having Down syndrome, and trying to tuck it away makes it taboo - and it shouldn't be.

And if my advice doesn't matter, learn from Dave Hingsburger, who says, "If your child has Down syndrome, you better tell them and their siblings - or someone else will."


All 4 My Gals said...

Totally agree! as you know. lol I am so glad that it's not a big deal to my family, and Tarenne totally loves herself. :-) And I totally love you and Paige. Thanks for being my light and teaching me to celebrate from the beginning!

Kris said...

I love your post! I agree, "...talking about Down Syndrome as easy as talking about what is for dinner"! I knew I had "arrived" when I was at this point. I remember when Jennifer was little and I would catch people staring. It made me very uncomfortable. Now, if they DON'T stare I think they should be! I mean would you not stare at this precious gem of a girl!

Anyway, loved your post and peace sister!

datri said...

One thing I've realized when I've approached people who have children with Down syndrome, is that not all parents know, or want to know EVERYTHING about DS. I realized this when I wore a shirt that said "Angels are made with 47 pieces" to our Down syndrome picnic and had a lot of people ask me what that meant.

travis.hill said...

A great post. My son was born with T21 & Esophageal Atresia in Dec of 07. You wouldn't believe the amount of people, and doctors, yes, doctors, that have wanted to see our son, the "baby with downs that doesn't look like a downs". You can see more of him at my partners blog: http://www.kaylapearson.com

We also started a few more sites after he was born to spread the word on esophageal atresia, fittingly, http://www.esophagealatresia.org.

Thanks for the inspiring post!


Tara Marie said...

Wonderful advise Betsy [as always]

I agree 100%.......for us, Down syndrome is just a facet of Emma Sage, no more or less than any other facet. We told our older children and family and friends about the possibility that our unborn baby might have Down syndrome from the moment we first got the same information. It has just been a facet of who she is. We embrace her, all of her, we celebrate her uniqueness and we support her 100% when her extra chromosome brings her challenges.

Love you girlfriend.

Ettina said...

Do you have any advice for someone who wants to start a conversation about disability with a parent of a disabled child? I'm autistic, and 'invisibly disabled' - most people can't tell I'm autistic when they've just met me. I often feel really lonely thinking I'm the only disabled person, so when I see someone with DS or some other disability I feel glad. But I want to interact with them and such and I don't know how to do so without making the parents uncomfortable. Any advice?

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