“I'm not scared of anything now because I know we as parents, and as a family, and as a community are capable of providing her with the stepping stones that she needs to do whatever she wants.”
Over the last decade, I have had the pleasure of supporting individuals with varying unique abilities in their search for independence through employment. Each of these individuals has possessed excitement, desire, and a remarkable set of skills - none more so than individuals with Down syndrome. Like our guests, prior to the beginning of my career, I had very little exposure to individuals with DS—or exposure I had was misguided. However, as I learned early in my career, and as I have gotten to see first-hand watching the subject of our podcast grow up, life is so much sweeter with her around. According to the CDC, each year, about 6,000 babies born in the United States have Down syndrome, which equates to roughly about 1 in every 700 babies. There are three variations of Down syndrome—Trisomy 21 (most common, roughly 95%), Translocation (only 3-4%), and Mosaicism (only 1-2%). Our story today comes from two incredible individuals named Sara and Jarrod, and their beautiful daughter Mila.
As you will hear during the podcast, there continues to be common misconceptions and stigmas associated with DS. Many of these come from the days of sheltered environments, embarrassment, parental blame, and societal condemnation of and for individuals with Down syndrome. Medical and societal advancements and improvements have created incredible opportunity, love and support for parents of and individuals with Down syndrome. One clear indication of these changes is in the life expectancy for people with Down syndrome. Life expectancy has blossomed from the age of 9 in the early 1900's, to the mid-20's in the 1980's, to an average of 80% of individuals with Down syndrome living into their 60's. The world is so much better with Mila—and countless other individuals just like Mila—in it! To learn more about Down syndrome, please visit some of the links below:
Incredible resources from local/national organizations can be found here:
- National Down Syndrome Society (NDSS)
- GiGi's Playhouse - Des Moines
- Down Syndrome Diagnosis Network (DSDN)
- Jen Jacob - Unexpected
- World Down Syndrome Day 2020
If you're looking for a repository of help and support, this National Association for Down Syndrome website is fantastic.
We referenced a marketing campaign in the podcast by the Canadian Down Syndrome Society, which can be found here.
Books
- Shut Away: When Down Syndrome Was a Life Sentence, by Catherine McKercher
- Hannah's Down Syndrome Superpowers, by Lori Yarborough
- Down Syndrome Parenting 101, by Natalie Hale
- Windows Into Heaven - Stories Celebrating Down Syndrome, by by Stacy Tetschner and Michelle Tetschner
- Mentor Training-Parents as Partners in Mentoring Event through Ask Resource and DMACC.
Please feel free to add your comments, suggestions, and other books/resources below. Most importantly always remember, you are loved, you are needed, you are appreciated, and you should never feel like you have to walk alone! Thank you for listening!
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