World Down Syndrome Day is March 21st: Local Mom Shares Experience

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When I learned my unborn daughter would potentially be born with Down syndrome, an extra 21st chromosome, I wasn’t the least bit surprised. I was 41, advanced maternal age, and working with families and children facing a life threatening illness as a palliative care social worker. When the doctor insisted on further testing after finding a heart defect, and wanting to know more about her chromosome abnormality, I refused. I knew in my heart that no matter what, whether gifted minutes with her or years, we would give her every fighting chance the medical world could offer her. I somehow knew, whether it was because of the years in my career or what, that I was going to be a special needs parent. After her birth, her heart condition became front and center for several years that we did not really have time to focus much time and energy on the fact that she also had Down syndrome.  Riley was and is always such a joy despite her medical challenges, she has never let that dull her spark, and yes. she is full of spark! And there is no denying our life with Riley is nothing but a blessing in our family!

She has endured five open heart surgeries, countless other medical procedures, and years of feeding by a tube, with every bit of strength and courage her extra chromosome has gifted her. She has an ability to face things so bravely it is hard to explain. I look at her often and think “I could never be as brave as her!” And I am not. I sit in awe of all she has been through and while she struggles to process much of it, she continues to bravely handle the things she has to handle. Although I will tell you it is not a normal or easy task for her.

down syndromeYou see, Down syndrome makes all things more challenging for her. Just even the basic steps of learning how to make her bed, dress herself, and so many other things take her so much more time and assistance than another child her age. She requires guidance that is different than raising a child that does not have Down syndrome. She has spent years in therapy learning to do things that come normal to other children. I will tell you though, some of the greatest teachers in Riley’s life have been her classmates, her peers. 

Since preschool, we have advocated for FULL INCLUSION for her. She has been in a general education classroom with typical peers, these kiddos are her greatest teachers ever! If there is ONE thing I can scream from the mountain tops, it is to instill in your children the ability to accept children that learn differently, speak differently, act and look differently!  Teach kindness and tolerance, model kindness in your homes and when you are in the community. Because your children’s character will come not just from what you teach them but also your character and how you treat people when in the community. Children in the classroom become great mentors for my daughter, and she thrives on those friendships. It is what makes her heart and soul happy and also makes her learn at the same time.  My daughter needs your child.  

So this March 21st, 2021, World Down Syndrome Day, please take the opportunity to talk with your children about the uniqueness of children that are different than them.  

There are many books out there on the topic, but You Are Enough by Margaret O’Hair is a new one that I love. Do you have any resources on educating children on peers who may be different? Share them with us in the comments.


Guest post by Josie White

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