Tuesday, March 21, 2017

A Few Things You Should Know ~ WDSD 2017

Today I've kind of bombarded my Facebook friends with information that just seems to come pouring out.  There are certain things I longed to say.

You see, today is World Down Syndrome Day.

These children have my heart and so I need to speak.


I'm not sure I can create a post that is clearer than the things I've shared today on Facebook.  I've decided I'm not even going to try.  If you want to learn a bit, not only about Down Syndrome, but about words that can hurt, our babies, and my heart....keep reading.

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Today is World Down Syndrome Day. The date 3-21 is symbolic of three copies of the 21st chromosome being present in every cell (Standard Trisomy 21). I'm going to be throwing some info out there today, as well as glimpses of my heart. We have four children with Down Syndrome, two sons and two daughters.

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Did you know there are actually three types of Down Syndrome? 
(1) Standard Trisomy 21 is the most common, with 90%-95% Down Syndrome being this. This means there are three copies of the 21st chromosome in every cell.
(2) Mosaicism in which only some of the cells have the extra copy of the 21st chromosome. This happens about 1% of the time.
(3) Translocation in which only a full or partial 21st chromosome attaches to another chromosome (usually 14). This happens in about 4% of cases of Down Syndrome.
Three of our children have Standard Trisomy 21. Our Hope-Glory has the Mosaic form from what we have been told.


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What not to Say: 
Example: "Down's Kid" "Down Syndrome Child"
What to Say Instead:
Example: "Child with Down Syndrome" "Adult with Down Syndrome"
Why?
This one just doesn't bother me. I know our friend's intent and huge hearts. If you've said it to me there is NO judgement. I do understand why it can be upsetting though for many. I had to learn and wanted to share this with others.. It makes sense. It's not about being politically correct. You see, Down Syndrome is just part of who our children are. It does not define them. They ARE a "child with Down Syndrome", NOT a "Down Syndrome Child". It is not ALL of who they are. It's the same with other special needs. It doesn't sound as thoughtful and loving to say, "Autistic Kid" "CP Kid" "MS Kid" "Arthrogryposis Kid". We put any diagnoses BEFORE the child, and it just sounds like we are defining the child by the diagnoses. Yes, it IS a part of who they are and there is NO shame in that. They (as with every child) were beautifully created. This (seeing only the diagnoses) is a war a bunch of battle weary parents are having day in and day out. People can underestimate our children. People can see the diagnoses instead of our child. Let's put the child first, even in words.

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Down Syndrome Myth:
"Children with Down Syndrome are ALWAYS happy!"
When we were in the process of adopting Jonathan and then Benjamin, a couple of parents who have children that have Down Syndrome pulled me aside. They laughed and said that people would come up to me and tell me EXACT the myth above. I didn't think much of it. Within a month of coming home with Benjamin from Eastern Europe, a kind woman came up to me and said, "I LOVE Down's kids (see previous post)! They are ALWAYS so happy!!!!" What they didn't know is Ben, not 15 minutes earlier, gave me a run for my money. He was in a MOOD (as every child is at times). He was grumpy and NOT happy to be out and he had been letting me know it. The person had just received one of Ben's winning smiles and high fives before making that statement.
Children with Down Syndrome have their own distinct personalities. Ben has his happy times, but also his sad, mad, and stubborn times. He has an inner contentment that I find hard to describe, but he's his own person. I have heard this same thing from many families. Some children truly are born joyous (one of mine was/is that does not have the diagnoses of DS). It's just not necessarily an inherent trait in all children that have Down Syndrome.

(Of course, while writing this post, this is what Ben was doing.)


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What not to say:
"Retarded" "Retard"
What to say instead:
Intellectual disability, Intellectually challenged, Learning Issues...and a million other more specific and kind words.
Why?
I admit this word makes me cringe. In past generations it has been used as a diagnostic term, so none of us should jump to a conclusion that 100% of the time it is said, that it's meant to be ugly. It doesn't mean we have to like it though. You see, in our current generation, "retard" or "retarded" is used in what I call "trash talk". It's used to say someone is stupid, an idiot, or "less than". It is no longer used as a diagnostic term (nor should it be since it means something different now). You don't have to let your imagination run far to realize how someone initially viewed children who have special needs as worth less. They then took that word and twisted it.
Okay, so we can use it in trash talk then? It doesn't bug my friends.
Nope, please please don't. I'm truly genuinely asking you not to. Because it's previous diagnostic meaning, there is no way to safely use it without ties to the past. It may hurt someone who may say nothing. Many of us, parents to special needs or children with cognitive issues, have heard our children referred to with this word. (Can you tell I don't even like to say it?) It makes me ill to hear and when used, even in trash talk, it infers a "less than" that goes beyond mere trash talk.
All this is to say, please don't say it. There are complete websites devoted to this subject. It's a demeaning word and there's no reason it should hurt to drop it from your vocabulary. Even if you don't agree with me, consider dropping it out of love for us, the neighbor, the family at school, the new member at Church, or your coworker who happens to have a brother with special needs (that you never knew about). Let's throw the "R" word in the trash where it belongs.

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I really don't like this shirt. It's constantly popping up on my news feed.
When I first saw it I was like, "YES! Shout it!" It took me mere seconds to change my mind. It wouldn't bother me even slightly to see another mom wearing it, but it's not me...very not me...or many of my friends. Maybe it's meant to remind us that we are strong enough to do this and in that way it IS good, but....
As parents of children that have special needs, we are not super heroes and sometimes we are remarkably weak. We are human. I've had said to me (more times than I can count), "I could never do that." "You are a super hero!"
I'm not and my fellow parents are not. We are honored to take care of a child that has special needs, some extreme. It's a privilege to take care of any child...period. I am not a power house. God gives me the ability to do what is in front of me. If God calls you to this life, He will give it to you as well. There are days where you will be remarkably strong. There are days where the fetal position looks wonderful. There are days where you will survive on no sleep and wish a machine could monitor the caffeine in your blood and shoot you up with more caffeine when it was depleted.
So, this shirt? No, most of us are not particularly strong. We are just a people. I long for more physical strength and plan on focusing on that, but it doesn't take a super hero to parent a child. It takes someone willing. It takes a lot of prayer. It takes a lot of God.
(P.S. Funnily enough, I hadn't even noticed the lack of "person first" in the wording of this shirt that I talked about in a previous post.)

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On my heart right now: Two little girls await overseas. They happen to have Down Syndrome. Of our two sons with Down Syndrome, only one came home. One passed away. Our girls need us and we need them. Please pray today (World Down Syndrome Day being appropriate) for the foreign government to finally send the paper we need and there are NO mountains we need to climb (Please Lord!). Please pray for an email to come that will ease my heart. (I'm really tired of stalking email.) Please pray for our daughters across the world. Look at a two year old and three year old in your life and just imagine where they are and how, across the world, you have no control over what happens to them. Please pray...hard...and for the financial aspect as well (that our grant can be met). Please stop and pray...and pray tonight...tomorrow....(Okay, so it's heavy on my heart.)

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So this is it.  These are my thoughts throughout the day.  Please pray with us as well.  We truly need it right now.  

Tomorrow I will write more about Timothy's surgery.  We will be leaving shortly.  I will try to update everyone on here.  Thank you friends.

2 comments:

  1. If you are willing, please share about my precious friends, Diane and Felix. What blessings they would be to a family. Thanks, Maria

    http://adoptedbydesign.typepad.com/blog/2016/06/my-entry.html

    ReplyDelete
  2. Felix doesn't have a convenient blog post... but here's our story.

    Felix started out week together a little suspicious about me. I reached for his hand, and he snatched it away dramatically. I acted shocked and pulled my hand back. A beautifully over-dramatic friendship was born at that moment.

    The next few times Felix saw me, he snatched his hand away and I acted shocked. During our tour of the Beijing Zoo, he slid his little hand into mine. He has super receptive language and listens to his nanny obediently. He usually only says one word at a time, and he helped me learn Chinese names for the animals. He adored the macaques. By the end of our zoo trip, and for the rest of the week, he threw his arms wide and ran to me for big hugs any time we got separated for a moment.

    When he found out that he could draw in my notebook, he had a great time, and he pointed to my bag when he was bored so he could draw. He started to imitate lines and circles, but really just wanted to doodle his own way. His fine motor skills for using toys or feeding himself were on target. I was amazed at Felix's patience when we waited through long lines or adults' speeches.

    He was a little fearful of a dark cave at the zoo, and also of a wolf statue, but with a little encouragement, he overcame his fears and even touched the statue. He is active and strong, and Felix is an awesome dancer.

    By the end of the week, Felix had claimed my lap as his own. He is a perfect fit if you are a mama who can't get enough snuggles.



    Felix has been diagnosed with Down Syndrome and a heart defect. The Hope Journey team noted that he has low muscle tone. He is very affectionate, able to dress himself, says a few words, and follows instructions. Felix is a child from our Journey of Hope program and is listed as a Special Focus child by China, which means a family at any stage of interest or at any stage in the adoption process is eligible to consider his adoption.

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In the joy of following our Heavenly Father, we sometimes choose to proceed with a whisper, a verse, or a downright shove...no matter how we follow Him, the momentum that follows is like nothing we've ever experienced before.

Join the momentum...it is a beautiful place to be. It's not always easy, but then the best things never are.

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