Monday, March 21, 2016

Dear Parent of World Down Syndrome Day... Look How Far You've Come!

Then King David went in and sat before the Lord, and he said:

“Who am I, Sovereign Lord, and what is my family, that you have brought me this far?"
~ 2 Samuel 7:18, NIV ~

Dear Parent of World Down Syndrome Day,

I have written to you before.  You amaze me.  Not because "God only gives special kids to special parents."  No, I realize you are completely incapable of handling this journey on your own.  My admiration comes from seeing how you persevere with God's help on this journey.  It is who God makes you through the challenges of raising your remarkable child that is so incredible.  When you cooperate with Him, you reflect His glory all over the place!

Most people don't know the challenges that you face every. single. day.  I confess that I didn't have a clue until I began serving parents like you.  The average person only sees the hallmark physical characteristics and cognitive delays of those bearing this diagnosis.  What is too easily overlooked or unknown is the increased risk of heart defects, autism, dental issues, vision and hearing challenges your child is more likely to encounter.  People don't know that your child has a more fragile immune system or may be more prone to certain types of cancer.

In addition to people's limited knowledge about your child personally, they are also ignorant to the important advances made in the world of Down Syndrome over the years.  When Dr John Langdon Down first published his paper on this collection of symptoms back in 1866, a child with this diagnosis would rarely live past their teen years.  People nowadays don't realize that back in the Mid-1940's someone as renowned as Dr Benjamin Spock recommended institutionalization of children with Down Syndrome.  That breaks my heart!  They are unaware that it wasn't until 1959 that Dr Jerome Lejeune identified this diagnosis as Trisomy 21, a chromosomal abnormality.  By the time Eunice Shriver had founded the Special Olympics in 1968, the lifespan of those with Down Syndrome had doubled to age 25.  More progress was made for all children with cognitive challenges when the IDEA (Individuals with Disabilities Education Act) passed in 1975, requiring that public schools offer a Free and Appropriate Public Education (FAPE) to children of all abilities.  In 1990 President George HW Bush signed the Americans with Disabilities Act into law, also defending the civil rights of those with Down Syndrome and others.  By 1997 the life expectancy of a person with this diagnosis had once again grown to 49 years of age.  And most recently in advocacy, the Achieving a Better Life Experience (ABLE) Act was passed in 2014, allowing tax-free savings for those with Down Syndrome and other disabilities to pay for basic needs.  That's quite a history!

Parent, while it may seem like we have so very far to go, be encouraged by looking at how far you've come!  Yes, we still need to banish the "R-word" and transform minds regarding inclusion, but Down Syndrome is not what it was when we were children.  Now children can look forward to a full life expectancy.  Just last month, headlines cheered Kenny Cridge as he celebrated his 76th birthday!  Madeline Stuart is smashing all preconceived notions as she garners much attention through her modeling career.  Work opportunities are expanding through AMAZING opportunities provided by places like Special Kneads and Treats Inc, Shepherd's College, and Plantables, LLC.  One by one, hearts are being changed and inclusion is growing.  Things like Tim Tebow's Night to Shine are building acceptance and fostering real relationships with the next generation.  And the value of each child's life is being protected as new laws are beginning to be passed in a few states, outlawing abortion because of the Down Syndrome diagnosis.

While it is so frustrating at times to feel like old perceptions and ignorant hatred will never dissipate, take heart!  A new era of hope is dawning!  The possibilities for those with Down Syndrome are greater than ever before!  And with the persistence and dedication of parents like you, things can only get better.  Sometimes we need to look at how far we've come in order to feel strengthened for the battles we still face ahead.  Today, dear parent, look at all of the ground gained and feel empowered.  God holds a bright future for you and your child.  And those of us in community with you are THRILLED to see it!

With Love and Admiration,
Barb Dittrich

PRAY:  Sovereign LORD, thank You for those with Down Syndrome and the families who love them.  Thank You that on a day like today we can pause to see how far we have come and gain encouragement for the road ahead.  Continue to blaze a trail of love, acceptance, and inclusion for all of Your precious children.


No comments:

Post a Comment