Sunday, February 9, 2014

6 things you may have said to a parent of a child with a Down Syndrome and you shouldn't feel bad about.

Lately, I have seen a lot of posts with titles like, 10 Things You Should Never Say to a Parent of a Child with Down Syndrome, or 20 Things You Should Never Say to a Parent of a Child with a Disability. And while there is validity in some of the comments listed, such as “What’s wrong with her face?”, I feel that many of these articles are unfair. Because if you happen to be that person, who doesn’t have a child with Down Syndrome and you read over phrases you know that you have said in the past, I suspect, for a moment, your breath catches and heat warms your cheeks as you are washed over with a sense of embarrassment and shame. But I am here to tell you, it is okay. I don’t blame you nor scorn you for the things that you said, because chances are, you said them in an attempt to extend empathy to Ella and I (or people like us). So let me clear things up: here are things to NEVER say to a parent of a child with a disability, some things that, if you have said in the past, you shouldn’t feel bad about, but some suggestions on how to give a more educated response and some phrases that are always welcomed and we (being parents) find encouraging and uplifting anytime. Fair?

Things to NEVER say to a parent of a child with a disability.

1.) The R-word. I don’t care, when, where or in what context just don’t use it. It is offensive and this is perhaps something you will never understand. It is derogatory and unnecessary.


Things you may have said in the past, but you need to not say in the future.

1.) “I’m Sorry.” When Ella was born, I had MANY people come up to me with tears in their eyes as they said, “I’m sorry.” For some, they may have been sorry that Ella had Down Syndrome, but for others, they may have been mourning with me, the ideals that I had in my mind about what my daughter’s life would look like. I don’t blame them but I know now, that there is nothing to be sorry about. The last thing a parent of a child with Down Syndrome needs, is pity. The “I’m sorry”s added to the darkness that will forever taint my memory of Ella’s birth. Instead say, "Congratulations!" He or she is a gift from God, not a burden or punishment.

2.)  “She doesn’t seem to have it that bad”, “She looks so normal” or “She is so high functioning.” I recognize what you are trying to say – she doesn’t exhibit all the symptoms you know to be associated with Down Syndrome or exhibits them to a lesser degree…I do it too…but that being said, now that you think about it, you probably didn’t really know what many of those features are. Let me explain how Down Syndrome works. In a “typical” body, there are 46 chromosomes. Individuals with DS have an extra copy of the 21st chromosome for a total of 47. This means that they will have extra of whatever genetic material is contained in that 21st chromosome. DS is black and white. Aside from mosaicism, they either have the extra chromosome or they don’t have it. There is no degree, severity, or levels. So when you say “she doesn’t have it very bad” it doesn’t actually mean anything. She has it. Period, full stop. Everybody has varying functionality and different abilities – it is unfair to put her into a box, especially as an infant or a child. She may not have the “bad” symptoms associated with DS but that isn’t to say, she won’t have “bad” symptoms in the future. Instead, why not try and say something positive like, “she is so bright” or “what beautiful eyes.”

3.)  “Did you consider abortion?”  I would have to keep myself from punching you if you ever said this to me…luckily, no one ever has. But the reality is, that it is common and 94% of pregnancies diagnosed with DS are aborted, so it’s on the radar. I believe life begins at conception so even if I knew that Ella was going to have Down Syndrome (which I didn’t), I wouldn’t have aborted. We didn’t know, because we didn’t ask, we didn’t have any tests done – it didn’t matter. That being said, if abortion is a regular part of your vocabulary I would suggest that instead, you say, “Did you know he/she might have Down Syndrome before he/she was born?” You’re curious. Most of us get this, and it’s okay.

4.)  “I’m not strong enough to have a child like that.” And you think I am?! [Insert sarcastic tone here] You’re right, I thought, I am going to show all those weak people just how great I am by having a child with a disability….uh, no. It’s not about whether we are “strong” enough, it is about embracing God’s gift to us and the grace we need to get through each day, no matter whether we have a child with a disability or not. Similar to this is “A special child for special parents.” This one I tell you, looking you straight in the eye, hand on your hand, because I know that you had the best intentions when saying it. But here is the truth – we are no more special than you, or the person next to me on the bus. We are all precious in God’s sight.

5.) “My uncle's cousin's plumber's son had Down Syndrome - he was always so happy.” I get what you are trying to do here. You are trying to contextualize my situation. You are trying to find a way to relate but chances are you can't and that's okay and I do not blame you for that. And for the record no. No, they’re not always happy. Ella get’s angry, she fights with her brother, she gets sad when she is reprimanded or discipline and she gets jealous when someone has something that she wants. Trust me, Ella, like ALL other people with Down Syndrome, experience the full spectrum of human emotion.

6.) “They can do lots of things.” Now, you’re right on this one…but for some reason, I suspect that “lots” in this case, means something different to you than it does to me. They can do lots of things - Ella can do anything she puts her mind to. Let’s let her decide what she can and cannot do.


Things we like to hear and are always welcomed.

1.) Celebrate the victories! For children with disabilities the victories often take more work and more patience, but when victory comes, it is all the sweeter and we love to celebrate with people who love our children.

2.) “She is so beautiful” or “She looks just like you”…well, at least I think so and I hope you do to. But EVERY parent loves to hear that their child is beautiful.

3.)  “God is going to use her in amazing ways.” Yes, he will. Let’s find out what those ways are together.

4.) Offer to babysit.

















26 comments:

Trish said...

She is a beautiful daughter. And growing more beautiful each time I see a new picture. Her smile lights up the whole picture!! What a great mother daughter friendship you can look forward to nurturing. I envy you!

cathy said...

BEAUTIFUL picture of Mama & Daughter--hope you frame it!

xoxo
cathy

Menchie Redubla Radam said...

This is indeed beautiful, a poster-perfect photo.!

Audrey Levine said...

Translocation is another form of Down syndrome. With that one may not have all the traits. My daughter has a tiny extra piece on her 21st chromosome, and has down syndrome.

Audrey Levine said...

Translocation is another form of Down syndrome. With that one may not have all the traits. My daughter has a tiny extra piece on her 21st chromosome, and has down syndrome.

Deborah said...

Wonderful post!

Anonymous said...

She is very beautiful. Thanks for sharing.

Krista said...

Yes, thank you Audrey, I knew I was forgetting something. I also met a grandmother who's granddaughter had atypical Down Syndrome...I can't remember the details of it though.

Jen Currier said...

Hi- what a cutie your daughter is!! I agree 150% (even though I know that "technically" nothing over 100% actually counts.) :) I'm not sure how old Ella is, but she doesn't look far off from my youngest- Elijah. He is everything I never knew I wanted...or at least, is just in a different "package" than I thought I wanted. Now, I just feel blessed. Not because, or in spite of the Down syndrome...just because he's my lovable, laughable, little spit fire of a son...:)

Daniela Barberis said...

thank you for sharing and thank you very much for those tips, for me they are very useful because I have no association with anyone with DS but I would like to make sure that if I am ever in a situation where I can encourage either a person who has DS or perhaps a parent or family member, I would like to be only an encouragment and not say anything to hurt anyone.

Your daughter is beautiful, but I am sure you must hear that all the time, as a mother to 3 boys I can't help but feel a tad jealous of moms who have daughters, and with such beautiful hair too, ahhhh lucky mom!! <3

lynda parkes said...

what a beautiful little girl xxxx

Rohde101 said...

Well said from another mother of an Ella :-)

Jenny said...

Excellent post Krista. I am loving how often I am seeing this being passed around FB!

Anonymous said...

Thank you for sharing this. Helpful and beautiful. I see 2 gorgeous ladies in that picture who clearly are very very fond of each other!

Laura said...

I cannot think of a better post on this topic :) Thanks so much.

Clickersister said...

Hi sweetie. You have such beautiful children! I have a DS brother who is 64 years old and has lived a wonderful, full life. Sadly, we are now nearing the end of it, but we still consider each day a gift. Blessings to you and yours. Hugs, Debb

Unknown said...

Thanks for your true words! I'm also very blessed with and proud of both of my children! My little girl with DS, born on WDSDay looks a lot like her big brother. How many times did I hear; "You can't see it very well"... Your girl looks so great, she touched my heart with those eyes! Enjoy every moment in health! greetings from the Netherlands, M'loes

Dianne said...

You must be very special in God's eyes to have been chosen to be family. Such a gift!!

Mary Gene Atwood said...

She is growing into a beautiful young lady. I see how much she looks like you. Been too long since I've visited your blog, I must pull it together! Happy days.

Mary Gene Atwood said...

She is growing into a beautiful young lady. I see how much she looks like you. Been too long since I've visited your blog, I must pull it together! Happy days.

Anonymous said...

Aww, your daughter is so cute! ♥ And I'm serious! She has lovely smile! :) And you're beautiful too.
xoxo some finnish girl :)

Anonymous said...

Oh my god, she is so beautiful! Those eyes!! And she has the same nose as you :) I wish you all the best! <3

Greetings from Finland, Jenna

Rachel Kelly said...

Great read. My little boy is 4 and I've heard most all of these things. Generally speaking, I think people just don't know what to say. I showed Luke, my son, Ella's picture and told him I had found him his girlfriend. She's beautiful!

Anonymous said...
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Anonymous said...

Can I add one that seems to come up all the time nowadays: There has been so "many" kids born with problems (a friend at work's grandchild etc), I bet it's the chemicals in our food or in our environment. So it's indirectly my fault? I ate my child to a disability? Just to clarify.... darn you potato chips! They should really print that stuff on the label....just saying.

The Beckmans

Taylor Schell said...

wonderful post! education and knowledge is power and you've delivered it here with finesse, power and gentleness. I also want to say the first thought in my mind when I saw that photo of you and Ella is that wow she looks just like her mother, gorgeous.

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