Parent Perspective – Jack’s Mom

When we were expecting our first child in 2017, we learned that there was a high chance that our unborn son would have Down syndrome.  We did some research but were hesitant to reach out to anyone without knowing we were officially going to be parents of a child with Down syndrome.  We were lucky that our employer decided to volunteer for the GiGi’s Superhero race and we planned to volunteer so we could be around people without having to say anything. However, our son had other plans and decided he would be born that weekend instead so we missed our first opportunity to get to learn about GiGi’s!

Welcome to the world, Jack!

While at the hospital, we met a nurse who had a brother with Down syndrome and the social worker, who both referred us to GiGi’s.  After getting our feet settled as new parents, we decided it was time to reach out.  We initially met with two other parents and their children.  It was a fabulous feeling to be so welcomed into a community and to learn what resources are available to us.  In fact, we felt lucky since new parents aren’t given a handbook, but essentially we did have one because of the support these families gave and the resources/information available to us through them and GiGi’s.

While all parents work hard to provide for their child and watch them succeed in life, the efforts we put in can look a bit different.  We spend significant time at doctors offices and with experts in genetics, disabilities, heart, ear/nose/throat, kidneys, orthopedics, thyroid, oncologists, physical therapy, occupational therapy, speech therapy, music therapy, and developmental therapy. We fight with our insurance company to get medical visits, tests, evaluations, and therapy visits covered, we research everything from what toys have therapeutic benefits to what options he has for his future. We may even consider moving to another state or job just for better benefits.  The list of what we must do to ensure our child’s success could go on and on.  Having the support of other families and an organization with a network of resources helps make the process seem less “different” and provides essential resources to make it easier to navigate.

The purposeful programming at GiGi’s is offered at no cost to participants with Down syndrome, parents and loved ones. We started attending LMNOP, a program intended for ages 0-3 focusing on speech, music, and sign language.  Additionally, we attended music therapy and one-on-one speech therapy this summer.  Jack, who is not yet two, is now signing multiple signs himself and understands a great deal more!  His language skills and social skills are huge milestones that would not be where they are without this programming.  As Jack grows, the programming grows with him.  There are groups for all ages, even through adulthood!  Fantastic Friends on Friday nights is a great opportunity for the teens and adults, and having attended a few times, it has provided me a greater sense of expectations for my own child.

Without GiGi’s programming, we would not have the support network of other families with persons with Down syndrome and we would be paying much more out of pocket for therapy to meet the same goals we meet there.  For families that are already incurring additional medical costs due to the number of other related medical conditions that occur with Down syndrome, having a resource that is free in our community is incredibly valuable.

While the programming is free to individuals and families, it is not free for the Playhouse to offer these opportunities.  The only way they can continue offering the community all the amazing opportunities they do is through donations, fundraisers, and grants.

To anyone with a potential diagnosis or a loved one with Down syndrome: Come check it out!  Come meet the families and individuals with Down syndrome.  Come learn why a diagnosis of Down syndrome is not scary and meet some amazing individuals.

To the community: Come check it out!  Meet some awesome people in your community.  I guarantee you will walk away inspired! You can also volunteer to help with any age, event or provide sponsorship to this non-profit.

As you may already know, GiGi’s has one of their major fundraisers coming up on October 5, the Superhero Race.  We hope to see you there! Come on out, dress up as your favorite superhero, and run a 5k or walk the inspirational mile.  If running or walking isn’t your thing, you can always volunteer or donate to the cause.

The other major fundraiser is a Gala event which is hosted in the spring. I am actually the co-chair for the planning of that event. We hope to see you there too! (April 25, 2020)

Submitted by, Sarah

See more about the upcoming Superhero Run, Walk and Dash for Down syndrome here: https://gigisplayhouse.org/quadcities/superhero-run-walk 

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1 Comment

  1. Sue Swegle on September 7, 2019 at 9:17 am

    Very nice article, Jack’s Mom!
    So encouraging & true. And your Jack is a cutie!

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