Amy Beth

March 20, 2018

Future thinking on World Down Syndrome Day

One of the first things you have to come to grips with when you get a diagnosis of Down syndrome for your baby is your vision of the future. Most of us, whether consciously or not, imagine our children’s lives to follow a predictable arc. They have a lovely childhood, make great friends, make good grades, graduate from high school, then college, then find someone to marry, get a meaningful and lucrative job and have adorable children. Obviously, as a parent, your dream for them includes lots of success and very little hardship and failure.

In reality, none of us can predict the future for our children, intellectual disability or not. We can’t guarantee that they will be successful. If you’re really being honest with yourself, you probably have to acknowledge that your child will experience failure. That they will be lonely. That they will feel lost at times and wonder what the point of it all is. There will be many things that they will not be good at. All of these things are a very normal part of life. But when you’re holding that perfect little newborn, with all the possibilities and none of the limitations yet, you can imagine all the best. Over time, as your child grows and you come to know their strengths and weaknesses, you may edit your expectations. Your wildly creative and spontaneous little girl may not make the best lawyer. Your cautious and meticulous boy may not be cut out for high school sports. But that’s ok. You know their thing now and you can guide and support them in art classes or chess club. The loss of the “perfect” future is replaced by a more realistic and well-rounded vision.

When you’re given a diagnosis of Down syndrome (or I would imagine, many other conditions that fall under the category of “special needs”) that shift happens a lot faster. It can be rather jarring. As parents we are suddenly faced with all of the limitations at once, usually in the form of a very official looking medical fact sheet. But our baby is just a baby. We don’t know who they will become or what passions they will discover. We aren’t given a whole lot of information for the “pro” column of their imagined future. But we keep looking with faith and hope. Faith that every life is created for a reason and that our child will one day find their passion, purpose, and gift to give to the world. And hope that when they do, the world will be ready to receive it.

There’s a reason inclusion is the battle cry of anyone who works with special needs populations. I’m not sure that it’s so much to prepare the people with special needs for the real world, but to make sure the real world is a place that can be accepting and accommodating of the unique way they will interact with the world. Inclusion is needed not only for those being included, but for those of us doing the including. So when we are given the opportunity to be in a class or a work environment with a person with special needs, we know how to handle ourselves and interact in a way that doesn’t hinder anyone’s pathway to success. It would be a shame to miss out on all that people with special needs have to offer just because we don’t know how to receive it.

So much work is being done right now in the name of inclusion, from organized crusades to trailblazing individuals who show the rest of us everyday just what people are capable of. These people are paving the way for more opportunities and more acceptance of my daughter when she is gown up and ready to make her mark on the world. Here are a just a few places where I have found encouragement and examples to add to the pro column of my daughter’s future.

Ruby’s Rainbow – This organization provides college scholarships for students with Down syndrome. There are colleges across the country who are developing programs for these students to experience college life and all the education and independence that comes with it. Their biggest fund raising drive of the year is happening now if you feel inclined to support them financially.

Down Syndrome Association of Central Kentucky – Our local organization dedicated to supporting individuals with Down syndrome has a lot going on. I’ve been especially impressed with the stories I’ve heard from their “We Work!” program dedicated to training high schoolers for employment. Their recent class of graduates all have interesting and meaningful jobs or internships.

Brandon Lack Studio – I stumbled across this artist on Instagram one day and find him to be a inspiring example of the variety of gifts present in people with Down syndrome, just like in the rest of us. His art is lovely in and of itself.

Enjoying the Small Things blog by Kelle Hampton – A friend sent me a link to this blog when Poppy was first born, and I’ve been following along ever since. Down syndrome isn’t the only topic she writes about, but if you’re curious to get a peek into the life of a typical family who has a child with Down syndrome, this blog gives a pretty accurate picture. Hint: it’s mostly like every other family. 🙂

Happy World Down Syndrome Day!

4 responses to “Future thinking on World Down Syndrome Day”

  1. Rebecca says:

    Love it, Amy, the words and the photos!

    Our school is doing something tomorrow for World Down Syndrome Day to celebrate the kids at our school who were born with Down Syndrome.

  2. Darlene says:

    Beautiful words, Amy. Thank you for the reminder that every life is truly a special gift.

  3. Beth Ann says:

    So well said. You’re a gifted writer and great mom. Hope it’s ok if I share this? So much better than I could have said.

  4. Kerry says:

    Thanks Amy for sharing your heart and opening doors of thinking and understanding for me!