Out and about with Down syndrome

September 12th, 2010

Now that Verity’s incision is all but healed and I’ve discovered the virtues of the Baby K’Tan sling, we have ventured out into public with her a little.  At the same time, her Down syndrome features are becoming more obvious as she grows out of the newborn phase.

(Keep in mind, O long-distance friends, that we haven’t posted “tongue pics” yet.)

It is time for the next step in our “Life with Down Syndrome” adventure!

When the eyes of strangers turn her way, I feel myself wanting to pull her in and protect her from…who-knows-what-ugly-thoughts-I-could-fear?  And it would be wrong to give in to that feeling.  It comes from the constant awareness that Down syndrome is the most common birth defect, and that the Down syndrome abortion rate is over 90%, which means that a lot of somebodies out there have made that choice.

When we look at Verity, her features are just part of what makes her our Verity.

What do other people see when they look at her?

Maybe some folks want to say something, but they’re afraid of giving offense?

I’m not quick on my feet, either figuratively or literally, but I love to talk with strangers.  I’d welcome the opportunity to help even one person be less afraid of Down syndrome.  I want them to see that this child’s life is an unqualified blessing from God.

Most of all, when we take her out, I want to be prepared to be used by God in whatever way He may choose.

A few icebreakers would come in handy.  One-liners that aren’t too cutesy, cheesy, or heavy, but would let others know I’m open to talking about it.

I’m brainstorming and not coming up with much!  “God sent us a special baby” could sound like we don’t consider our first nine children to be anything very special.

Any suggestions??

In the meantime…

I just can’t resist…

Showing you…

This face I kiss…

Share it!

24 Responses to “Out and about with Down syndrome”

  1. I’ve never been good with one-liners, but may I just say that these pics are the most adorable yet? She is absolutely gorgeous!!!!

  2. Shari~hotfudgecustard says:

    OH, those kissable cheeks!!!  How could you resist?

    Maybe you could tell people how much you love almond-shaped eyes. 

    Or say something like, “I was scared of having a baby with Down syndrome, too, until I met Verity.  She’s not really very scary, is she?”

  3. Ashley says:

    She is too cute! Laura is almost 11 months old and people are really starting to notice her “features” to the point to where they just come out and say stuff like “Oh, she’s so cute. I have a brother with special needs too.” They just know now and that’s ok with us :) She’s who she is and we love her for it! Just like you guys love Verity :)

  4. Ashley says:

    I’m making a DS awareness video and I was wondering if I could include Verity in it! :) I would love to have that cute little face in my video

  5. Susanna says:

    Ashley, of course you may as long as I get to see it when it’s finished! ;)

  6. sabrina says:

    She is just SO pretty! I think just having her and loving her and showing her off to the world is the best thing to help other people. I remember thinking that when I saw Sarah Palin with her little one in a sling when she was campaigning. I didn’t think that the mother of a small baby also had time to be Vice President, but I loved that she brought him out and shared with the world how much she loved and wanted him. I thought that was helpful to people.
    I would just focus on what a blessing she is and how much she is loved and wanted. I think that all speaks for itself.

  7. Janns says:

    Susanna, while I would never dream of aborting, if I was told that one of my babies would have Down’s syndrome, getting this glimpse of your journey has definitely made me less afraid of having a baby with Down’s syndrome. (My little Peter is completely enthralled with Verity. so, he’s not afraid either!) :)  I have no advice on what to say. I’m not good about thinking up things to say either.

  8. Sandy says:

    Holy moly SHE IS CUTE!  I wanna smoosh those cheeks and kiss kiss kiss her!
    How about, “All of our children are special blessings, but God sent Verity with a little something extra special…the 21st chromosome!”
    Did I mention she’s cute? Cause she is.

  9. Angiedawn says:

    Oh she is just SO beautiful!I *can* see her special little look but I am not sure I would see it if I didn’t know that she had ds. Mostly, when I look at her ,I see your other children! BUT what I was going to say is that I LOVE her special look! It is sooooo cute….something about her is just so so precious and I think it is her “look”.The thought of someone thinking anything negatively about her makes me feel things that could lead me to being *not very nice* to the person thinking/saying the negative things.I just love her!!

  10. Claudia says:

    I never did the test on Chromosome while I was pregnant. How can they abort these angels??
    I love Verity!! when i see her I feel the love of GOD.
     

  11. Alma Charles says:

    I’m not sure you really need to have any one-liners ready.  If you are completely OK with who she is, that will shine through.  I love taking Destiny out, because she reaches the hearts of people that none of the rest of us do.  Store clerks, passersby, etc. stop to talk to her, and she so sincerely loves them in return.  (And of course, her Down Syndrome features are very noticeable.)  I have found it helpful when anyone stops to talk to or about her, (and I’ve done this since babyhood) to say sincerely, “We enjoy her SO much,” or “She is such a delight,” or some other equivalent.  Remember that many of those abortion choices may well have come about as a result of misconceptions or fear of the unknown, and you have a blessed opportunity to help remove both of those in some small way in the lives of those you cross paths with.  And by the way, I think you’ve been doing a super job of that already. :-)  I pray you will find going out and about to be a wonderful God-led adventure!!

  12. Robin says:

    The first thought that came to mind when I saw your question was that you could just say “Isn’t she beautiful?” and hold her up for them to see! That lets them know that you are open to conversation and it’s okay to look (stare) at her. And that you are comfortable with (Love!) her differences.
    Giving people verbal permission to look at her unique features could open many doors for them to ask questions. It can be socially awkward to look for long periods, but I think that if people felt that it was okay to look, they would see her beauty and become more comfortable with all sorts of differences!

  13. Joy Horton says:

    Oh, don’t EVER resist taking pics of that sweet little face to show us! We’re ready, willing, and waiting!!! Her cheeks are SO kissable. I’m glad you’re using them up!!!!

  14. Chanda says:

    I also have babies with generous cheeks!  I love the pictures of Verity.  My daughter Sabrina is three and is blessed with DS.  I usually just smile when I see people looking at her to make them feel comfortable with talking to me.  I have to admit that I don’t know what to say when I see another family with a baby with DS.  I usually want to run up and say something like, “Look me too! Glad you’re in the club” and then ask lots of questions.  I rarely say anything.  I am not quite sure if people can tell if Sabrina has DS or not so when I start talking to the families I feel like they think I am crazy or intruding.  So, I just smile.

    As far as others reacting to Verity, my typical response is “She is so cute” or somone will say how they have a family member with DS etc.  The second most popular response I get is, “How long have you had her?”  People see Asian instead of DS with her and assume she is adopted.  I just say “Oh, you think she’s Asian.  She has Down Syndrome.  That’s why she looks different”.  Then I laugh and tell them it’s okay.

    People are cool.  I haven’t had any negative experiences with her, and I hope it is the same for you! 

  15. Ashley says:

    Thank you! I will definately let you see it when I’m done :)

  16. Tami Swaim says:

    That last picture caused me to make a lip balm blur on my monitor!  Stop that Susanna!  She is tooooo cute!!!!!!!!!
    I know the feeling that you are talking about to an extent.  When you look at most children with autism you usually don’t “see it”.  BUT then in some ways that’s worse because the odd behavior that they sometimes can possess comes as a surprise or shock!  Basically when Joel was smaller I really , really, wanted to get him a tee shirt that read “I’m not a brat, I have autism!”  Because he *looked* like a typical kid but behaved very inappropriately in public.  Praise the Lord Joel has learned to modify his behavior and we are just so proud of him.  Even so, I hated being so *moved* by the thoughts of others or by my thoughts of what their thoughts are.  To give a recent example the excitement of the waves at the beach this summer would cause Joel to bob his head and well, turn a few eyes.  He just wasn’t displaying *typical* behavior.  Certain emotions or bodily sensations cause Joel to react physically or verbally…making ‘weird’ or ‘odd’ or simply ‘non-typical’ or socially “acceptable” movements or noises.  BUT you know as his family these are the things that make Joel>>Joel to us and we love him all the more.  Sure we try to help him become more confident and develop to the best of HIS ability or to what God has planned for Him.  We do give him the needed therapy but the rest…the rest of what Joel will do that may be unique individual the people around us out and about may not accept it or be comfortable with it but …too bad so sad!!!!!!!!!!!!!!!!!!!!!

  17. Alison Darty says:

    First of all, I have an enormous need to pinch those cheeks!
    Second, GO OUT. We have never once had a rude comment from strangers on the street. We get the exact opposite actually. People chase us down to tell us our daughter is gorgeous. It’s very weird and different from what I’d expect, but I think that it helps, because if I do get a weird comment, it will be quickly cancelled out by all of the positive ones I’ve received.

  18. Susanna says:

    You all are wonderful!  You have encouraged and instructed me greatly–thank you!!

    I received a personal email from a mom of an adult daughter with Ds today, and I want to publish part of it here, b/c it is a valuable addition to this conversation~

    “In my experience most of the people that smile and nod their head have a working knowledge of D.S. Maybe they have a relative, acquaintance etc. You will get stares as we have all these years. But I think the stares are almost breaking down barriers and educating – without using the spoken word. If my daughter is grocery shopping with me and she goes to a different part of the store, she is teaching others that she is capable of being independent and locating something herself in an aisle. I love the looks of others when she has de-boarded a plane by herself ! I love when people hear her use her cell phone etc. When they hear her order her own food off of a menu. When they see her negotiate herself to the restroom without assistance. When they see her dance at a wedding.”

     

  19. What a cute little girl!! Such a special gift from the Lord!!  No advice, but I’ll be praying the Lord will give you wisdom, I know He will, the Lord shines through your writings here on your blog…  ((hugs))

  20. Betsy says:

    Way to Go Verity!! Holding that head up, such a strong, beautiful girl!!

    Susanna, Mark 13:11 is ringing in my head…Whenever you are arrested and brought to trial, do not worry beforehand about what to say. Just say whatever is given you at the time, for it is not you speaking, but the Holy Spirit. ( I know we must be careful taking scripture out of context but it was still ringing in my head so I felt I must share.)

    I had an incident with a little girl this summer meeting a teen age girl in a wheel chair who was born with cp. She asked me about her and I took her over and we had a conversatin with the girl in the wheel chair. What a blessing!
     
    I think the suggestion of “isn’t she beautiful…God has blessed us so greatly.” is a terrific statement but back to Mark 13… Pray before going out and ask the Lord to make you a blessing today. Verity will lead the way just like every child does. God created her in His image and will use her for the purpose he has set before her.

  21. Lindsey Binkle says:

    In reading quickly through the comments, I must agree with someone who said that if you are confident in who she is, then it will shine through! While I was reading your blog, I had to take a look at myself through your eyes…it’s difficult. Many times I see people out and about with their children who have disabilities, and with my education experience and background of working with a handful of them, I tend to catch myself wanting to look at how families work with their children who have special needs…not because I’m being nosey or rude, but I’m genuinely curious! I have a tendency to think that there are so many parents out there that don’t know what potentials their own children possess!! I love to see and work with those parents who have high expectations and have an abundance of love for their children!! Those are the ones who allow their kids to rise up!! This past summer I was standing in line at WalMart and we got a little hung up at the cashier. While we were waiting (forever) for a price check on a pair of water shoes there was a family behind me of two parents and three children. The children were all about the ages of 12-18, I think. One of them had Down Syndrome and I heard him saying repeatedly, “dad…dad….Dad….DAD…DAD!!!” His father continued to ignore him! I was appalled!! Finally the boy’s attention turned to Calvin in the cart where I (like I do with all others who are curious about my cutie) prompted him to wave and blow kisses to the boy. This boy became so happy that a baby was giving him this kind of attention! The other siblings quickly joined in the fun interactions, and it was the parents (the mom, really), who FINALLY prompted her son (without even a smile) to ask the typical questions: how old is he? what’s his name? It turns out that the boy with Down Syndrome’s name was Adam Calvin! (Like Joan and my sons names!). Her son was so excited that he shared his name with Calvin! It was a blessing to interact with the boy…but so strange and clear that his parents had no abundance of love for him. I love to read your stories and I just imagine that with all the love and support you are pouring out that Verity will be an AMAZING person as she grows…smart, confident, beautiful! Just like the rest of her family!! :)

  22. Marilyn Osborn says:

    I’m in love with her.  She is so very precious!  She makes me SMILE every time I see her!

  23. Leslie says:

    She is just beautiful!!!  No help on the one-liners.  You will find your comfort zone with this I’m sure.  As you love and enjoy her, people will view her through your eyes too and see her as the blessing that she is!

    Blessings
    Leslie

  24. Beth says:

    When Hannah was about 9 months old it used to irk me that people always seemed to look at her.   There would be people who would compliment her beautiful fuzzy red hair, or her amazing eyes.  And there were many people who would just look.
    It wasn’t until I was keeping a friend’s baby one day that I learned something.  I had to run an errand, so I brought this little one with me, and left Hannah at home.   While I was out at the store, I realized that people just like to look at babies.   I had forgotten that.  Silly me.  Most people aren’t looking to judge–they are looking because babies are interesting and cute.   I was too caught up in my own little dramatic mind to realize that not everything that happens is “because she has Down syndrome”.
    We have never heard an unkind remark from strangers or  acquaintances.  Certainly there have been people who are curious and not familiar with Down syndrome who say awkward things occasionally, but never with bad intent.
    Generally, if someone is interested in a conversation beyond requisite salutations, I casually sprinkle in the words “Down syndrome”.    As a baby, the opportunity usually arose because someone would ask how old Hannah was.  The next question usually be, “Is she sitting/crawling/walking?”  or, “Wow!  She’s flexible!”    Then I’d reply with something like this,  “Well, since she has Down syndrome, she has low muscle tone…”
    There will be awkward times, where you will wondering about people’s reactions.   I find it best to to just put Down syndrome out on the table so that people are more at ease.
    For now, assume that everyone is looking at her because she is a beautiful baby–and they are so right!   You’ll get more comfortable with what to say as you grow with Verity.

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