Why it means so much when you support the Down Syndrome Association of Central Florida

Diane Levine
Jul 27, 2017 · 4 min read

Since Cooper was born, we’ve been asking friends, family and anyone else who will listen to support the Down Syndrome Association of Central Florida (DSACF). And you guys have come through. BIG TIME. You’ve given your money, your time, your auction prizes, your Saturday mornings…and you never once asked what we were getting from this organization in return. But I want to tell you anyway. So here goes: how DSACF has made (and will continue to make) a real difference for our family.

The first glimmer of hope after a gut-wrenching diagnosis

I’ve already shared the story of Cooper’s prenatal diagnosis and the emotional roller coaster that followed it. What I left out was this: even after we made the choice to move forward with the pregnancy, I was still crushed and scared and unbelievably sad. Then I attended a new parent breakfast at DSACF. There, I met several parents and their young children with DS. One mom stood up with her nine-month-old baby, shared some of the medical challenges they’d faced their first year and offered her phone number to any parent who wanted it. A father of two boys (one with DS, one “typical” — a word I would soon learn) reassured us that his sons were more alike than they were different. All the while, the kids were crawling, giggling, crying…doing all the things kids under two do. And for the first time since the diagnosis, I stopped thinking about having “a kid with Down syndrome” and started thinking about having, well, a kid. A kid who would make me smile and laugh and scold him when he tried to lift my shirt up while I was talking to a bunch of strangers. And that thought made me feel something about the pregnancy that I hadn’t in a long time: happy.

A roadmap (and in some cases, a guide) for a complicated path

Between his therapies (speech, physical, occupational), his medical specialists (geneticist, cardiologist, ENT) and his educational/social services (early intervention, public school services), Cooper’s path is a bit more complex than your typical kid’s. While we’ve gotten into a groove, we still have plenty of days where we feel adrift in a sea of appointments and assessments and evaluations and documentation. Our saving grace is that we don’t have to figure it all out on our own. Through DSACF, we have access to people who know a hell of a lot more about this path than we do. Besides expert advice at conferences and seminars, I’ve gotten great recommendations from their social media community as well as from parents that I meet at various programs and events. Cooper’s about to turn three, so we’re transitioning from the Early Steps early intervention program to the public school system. When I mentioned to another member of the board that his first Individualized Education Program (IEP) meeting was coming up, she offered us more than advice. She came to the meeting herself, and even met up with us beforehand to review his reports and let us know what to expect. This level of support from someone outside our family astounds me. But it exemplifies the generosity and selflessness I’ve seen from this community from the get go.

Support for every stage of Cooper’s life

Cooper’s only three, and he’s already taken music classes, dance classes, even a twelve-week Special Olympics junior athlete training program, all through DSACF. We received a $900 scholarship to cover a comprehensive assessment from a specialized therapy center in Jacksonville. We’ve gone on family trips to Universal Studios and SeaWorld. And for every program we’ve taken advantage of in the past, there are many more that we’ll need in the future, such as the employment assistance programs and maybe even the upcoming entrepreneur academy. It’s a huge comfort to know that as Cooper grows, we’ll have access to programs like these that meet his changing needs. And it’s all offered at no cost to us, other than the relatively minuscule ($20) annual membership fee.

It would be impossible for me to truly quantify all that DSACF does for our family, but those are the high points. The real value is beyond measure. So the next time I ask you to join our Step Up team, make a donation, attend a fundraiser, or support DSACF in some other way, just know that your support goes a long, long way.


Thanks for reading!

If you liked this post, please take a second to click the green heart and recommend it. Every heart means a lot. To learn more about my quest to get the most out of life and make sure my kids do the same, check out Operation Goosebumps or Facebook. Feel free to contact me directly at diane@operationgoosebumps.com.

Diane Levine

Written by

I write about whatever I can’t stop thinking about. Sometimes motivational. Sometimes emotional. Sometimes funny. Always honest. More at OperationGoosebumps.com

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