Changing the World for Down Syndrome

GiGi’s Playhouse is such a wonderful resource for people with Down syndrome AND their families. Check out Erin’s story here to learn more about how GiGi’s has impacted her and their family.

When parents welcome a newborn child, they anticipate their baby’s first smile and first steps and dream about the person that child will grow to become. The birth of a child with Down syndrome is just as joyous. Yet having a baby with a life-long disability comes with many worries. Parents’ thoughts jump years ahead. Will my child be healthy? Will my child be able to communicate and speak well enough for others to understand? What if my child never learns to read … never has friends … never falls in love … never gets a job … never lives independently? Will people accept my child or be mean or discriminate against them? How will this disability affect my child, as well as the lives of our other children and our entire family? How will my child be able to get the help needed to reach his or her fullest potential?

For families, these concerns and challenges can be overwhelming and isolating. Down syndrome is the most commonly occurring chromosomal disorder, but it is also the least funded major genetic condition. Thankfully, there is an organization working daily to address every single one of these concerns for kids and adults with Down syndrome in 46 communities throughout the U.S. (and one in Mexico!) The mission of GiGi’s Playhouse is to change the way the world sees Down syndrome with a message of global acceptance for all. GiGi’s does this through providing free educational, therapeutic-based and career development programs for individuals with Down syndrome, their families and the community.

Like many families in our community, GiGi’s Playhouse Milwaukee has been there for our daughter since the first days of her life. She had been home from the hospital only a few weeks, after spending her first month in the neonatal intensive care unit, when we went as a family to an open house about the new GiGi’s Playhouse coming to our community. That event was the first time our family was able to meet face-to-face with other families in the same situation. We shared notes about our health issues and experience, and what it was like to figure out how to be a parent for our daughter with Down syndrome. We watched the older kids interact and got a glimpse of the wonderful kid our daughter would become in a few short years. The peace of mind this brought was invaluable for a family dealing with a life-changing diagnosis.

Once our Playhouse opened a short time later, we became regulars. Our daughter benefited from the free programming, which helped her to learn to play, sing songs, make art, walk, and talk – things that come easily to typically developing children but can be extra challenging for kids with Down syndrome. Many people are aware of the intellectual impairment and developmental delays that come with Down syndrome, but issues with low muscle tone can cause pervasive physical challenges as well, such as difficulties with speech and gross/fine motor skills. GiGi’s programs are targeted by age to address the common challenges of Down syndrome thanks to the amazing volunteers who provide specialized programming. GiGi’s is a second home for our family. All our kids play together in an inclusive setting – no matter their abilities – and we parents find a community of support and sharing.

GiGi’s offers weekly and monthly programs and events, such as one-on-one literacy and math tutoring, group and individual speech therapy, art instruction, sporting events, GiGiFIT fitness and nutritional classes, social and job skills training, and more, designed to help children through adults achieve independence and live their “best of all.” From the program coordinators and facilitators to the tutors, to the board of directors, GiGi’s Playhouse is almost completely run by volunteers. Additionally, the nonprofit Playhouse is solely supported by local donations and charitable funds.

This dedication and commitment has inspired me and so many others to give our time, effort, and energy to help this under-served community. The most amazing thing that inspires me to give back is GiGi’s model of free and volunteer-led programming, which removes the barrier of cost for our families – no registration fees, no cost for materials, no membership fees. Down syndrome affects families at all socio-economic levels and occurs in every race and ethnicity. As a volunteer board member, I am one of the dozens of people at GiGi’s Playhouse Milwaukee contributing to advancing our mission. The fundraising I do expands our scope and ability to serve even more families in our community, so kids like my daughter can have the benefit of an organization dedicated to their future success. The marketing and communication I help with ensures that the ever-growing number of families we serve know about the help that is available to them. Even more, it helps our community learn about GiGi’s Playhouse, the work we do, and the wonderful people with Down syndrome in our city – so when they or someone they know receives a diagnosis of Down syndrome for their baby, it will not be so scary.

Together, we’re changing the world by showing what people with intellectual disabilities can accomplish, but most of all that people with Down syndrome are more like their peers than different.