Down syndrome, the “easy” disability?

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Wil has a loving and personable disposition, therefore, Down syndrome is an easy disability, right?

I may have given this impression because I choose to write on the joys of life with Ds. However, every disability comes with its own complexities and challenges. Please allow me give you a glimpse into why I put my focus on Ds where I do.

When I decided to write this blog about my child with Down syndrome, I had two main options on which to put the focus:

  • Use this blog as a place to share the challenges and health issues of kids with Ds(which is extensive, just google it)
  • Use this blog as a place to share the joys of raising a child with Ds

With lack of research and lack of public awareness of the quality of life of Ds, people fear Ds.  The extra copy of the 21st chromosome can bring with it health issues and delays, yet Down syndrome is not as greatly researched and medically funded as other widely known disabilities. Sadly, lack of awareness along with new medical strides in pre-natal testing has contributed to greater termination rates where Ds is detected.

Obviously, health issues, delays and other challenges are very important topics to be understood and addressed. However, I firmly believe, that if you do not understand the great value of a child’s life with Ds, first and foremost, the aforementioned will add to the fears.

There are excellent writers and advocates for medical research and educating medical professionals about the quality of life of people with Ds. With this education, medical professionals can help new parents make informed choices. One of these writers is Brian Skotko http://www.brianskotko.com/. That is his area of expertise, and I am thankful for his advocacy.

As I am raising a child with Ds, I  have chosen to write and educate on the joys of parenting a child with Ds. That is my passion, and my expertise.

When Wil was born, and we were told he had Ds, I had very little knowledge about what that meant. If someone had thrown all of the medical jargon about Ds at me, and focused on the health risks and delays, that would have only contributed to my fears.

Instead, the afternoon of the day Wil was born, a social worker walked in to my hospital room carrying a blue folder. I knew that folder was full of info about Ds, and she was going to be the “helpful” social worker by going through all of it with me.

I immediately didn’t like this woman and her blue folder.

Wasn’t being told your child had Down syndrome enough to process for one day?

She proved me wrong. Instead of opening the folder, she simply held it up in front of me, and said, “Isn’t she beautiful?”

On the cover of this folder, almost taking up the whole of it, was a close-up of a young girl with Ds with large almond-shaped blue eyes.

Gone were my thoughts of medical conditions, cognitive and physical delays. All I saw was the bright face of a beautiful child.

I will never forget what that kind social worker did for me. She brought my focus away from the condition, and put it on the child, first.

After I brought that blue folder home, I took time to go through it. It contained tons of valuable information, and soon became dog-eared from my constant reference to it. However, each time I pulled that folder out, I first saw the bright eyes of the child on the cover.

That blue folder turned into a metaphor: Though knowledge is of great importance, the first focus is on the beautiful child.

I so love Wil, and the joy he fills me with, that even though challenges are there, this love is what gives me strength to handle them.

I share these joys with you, so you may see the quality of my son’s life, despite his challenges, and the strength this love gives to work with the challenges. Maybe in doing so, I have given you the misconception that Ds is an easy disability.

That said, I will conclude with one of my favorite quotes: “I never said it would be easy, only that it would be worth it.”

Oh, you are worth it and then some, my little buddy.

All the best,

Christie

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20 Comments (+add yours?)

  1. Trudi
    Jun 14, 2013 @ 17:02:19

    Awesome! Can’t think of a better response.

    Reply

  2. mostlytruestuff
    Jun 18, 2013 @ 03:39:52

    This is truly beautiful. I find the whole notion of “easy disability” insane. What an oxymoron that is! I understand a little of the idea though having a child with autism and a child with Down syndrome. But really, it’s comparing apples and oranges. Casey’s first three years were much harder than Abby’s first three years. But that doesn’t mean that those tides will change here soon. We just don’t know.

    I love what the social worker did that day, and it’s what you are absolutely doing with your blog. It’s not easy. No. But it’s amazing.

    Reply

    • Christie Taylor
      Jun 18, 2013 @ 10:02:46

      Thank you!! Yes, an oxymoron would be the word! Each disability has its own unique challenges…its comparing apples and oranges, as you say, and know first-hand.
      That social worker will forever be an angel in my mind, what a gift she was!

      Reply

  3. Paula McAllister
    Jul 05, 2013 @ 18:23:42

    Thank you for writing this you are so right. When I got the ds diagnosis for my son it was like he suddenly had two heads or turned green but when I saw him I realised he was still the same beautiful little boy he had been 10 minutes before. He is my son not his diagnosis. DS has its challenges but it is just part of who he is and we will all be stronger for dealing with the challenges and knowing him. Good luck to you and your son

    Reply

    • Christie Taylor
      Jul 06, 2013 @ 12:07:27

      That is so true, that we become stronger for the challenges. I’ve found I’ve become kinder and more compassionate as I raise Wil, and I’ll forever be thankful to him for that. All the best to you and your son!!

      Reply

  4. Melanie Payne
    Jul 05, 2013 @ 18:27:10

    Well said!!

    Reply

  5. Stephanie
    Jul 05, 2013 @ 18:45:35

    Hi there! I found you on the IDSC FB page. I love this post! I had a similar experience in the hospital too but mine was from our local Ds association. She was one of only 2 people that congratulated me on the birth of my son, Owen. I was so glad she came to see me because I needed that at the time, much like you did with the social worker. I so wish more people had that same experience with just one person so that they would see they have a wonderful child instead of just a diagnosis.

    Reply

    • Christie Taylor
      Jul 06, 2013 @ 12:00:02

      Stephanie, thank you so much for sharing. Your words bring me back to that time…you are so very right that it only takes one person to open your eyes to the beauty of the child you have at such an overwhelming time, though its sad how there is typically only one or two people to do that. We have a lot of work to do with awareness. You sound like you are part of an amazing Ds group that is doing a big part in raising awareness, and I applaud you and them!

      Reply

  6. jennsheran
    Jul 05, 2013 @ 21:42:31

    Thank you for writing. My son brings so much joy it overshadows any challenges we encounter. I too am passionate about helping people understand the immense value in the lives of persons with DS. Blog on!

    Reply

  7. carolineplayle
    Jul 06, 2013 @ 05:34:23

    A great blog and Wil looks gorgeous. What the write really resonates with me, so passionate for people to see beyond the disability. I did a recent TedX talk on the subject if anyone interested here

    http://m.youtube.com/#/watch?v=RU9nAO2dj0w&desktop_uri=%2Fwatch%3Fv%3DRU9nAO2dj0w
    I
    Kind regards, Caroline

    Reply

  8. Claire
    Jul 06, 2013 @ 05:49:21

    Great post!

    Yes, people often assume kids with DS are ‘so easy’ and ‘so happy’ all the time. Trust me, my child gets upset, is stubborn as heck and even cries too! =)
    We have 2 sets of twin girls, 2 1/2 yrs apart! (Twin girls rock, right?!) One of the younger set, now 23 months old, has DS and Spina Bifida. We have LOTS of challenges but I wouldn’t change her for the world. Thanks for bringing awareness of how wonderful it is raising a child with differences. =)

    Reply

    • Christie Taylor
      Jul 06, 2013 @ 11:49:48

      Wow, two sets of twin girls!! My hat goes off to you and the great momma work you are doing!!! (and yes, twin girls most definitely rock!!) You know better than anyone how challenging things can be, but also how very truly amazing it is! That is the key to acceptance of our sweet kiddos, so its gratifying to see this post reaching out to convey that message 🙂

      Reply

  9. Ruth
    Jul 06, 2013 @ 06:56:57

    I have no doubt Will loves you every bit as much as you love him…. Thanks for sharing as always Christie 🙂

    Reply

  10. Marianne
    Aug 24, 2013 @ 13:07:07

    Pretty helpful look forward to visiting again.

    Reply

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