Uniquely United

Even without the pink t-shirt reminding others that she’s uniqueit isn’t hard to figure out. If you don’t know her you may see some physical characteristics of Down syndrome. Her face is a bit flatter, her eyes wider set and hidden behind glasses, but there is often a giant smile on her face. 

Finding GiGi’s Playhouse was a huge relief as a parent. Until 5th grade our girl was the only person in her daily life that had Down syndrome. She had met others in public, and when she was younger, she had a daycare classmate with Down syndrome, but for the most part it was just her.  Why was it solitary? Well, we would try events, but some of her personality traits make events challenging. Our girl prefers to march to her own drum. She likes others, but crowds will overwhelm her. Also…she doesn’t talk. Yes, she’s 12 but she doesn’t talk. So big activities mean she’s asked questions or trying to understand directions while also trying to shut out loud sounds and trying to ignore other people. She’s pretty sensory sensitive and happiest when with someone close to her and engaged in solitary play.  While we guess she’s pretty introverted, it is hard to tell if she chooses to be alone, or if she just doesn’t know how to act with others.   

When we first moved to the Madison area, GiGi’s Playhouse was one of the first places we reached out to. We did some play dates, tried a few classes, but again, the larger groups did overwhelm her. But last year, we discovered the Dual Diagnosis Program, called Dynamic Duals, and it’s been one of the highlights of our month since. 

Dynamic Duals is a program at GiGi’s Playhouse designed for individuals that have both Down syndrome and Autism, whether officially or unofficially diagnosed, or Down syndrome and sensory or behavioral challenges. The individuals are matched up with a volunteer (ideally the same one monthly) and they play, work on transitions, communication, any other challenges with their volunteer in a comfortable and fun environment. The ages vary, there are children as young as 3 or 4 to young adults in their twenties. Most of the individuals have an official dual diagnosis, but there are a few of us (such as our family, that don’t). She has had a blast in class. She’s explored different musical experiences including trying her skills at the piano.  

While our children are in the other room playing and learning, the parents meet in another room. Having a child with special needs is challenging and can be isolating, because not only do our children have the challenges of Down syndrome but also other challenges such as communication, potty training, following directions or focusing on a task. In this parent group most of us have experienced the same challenges at one time or another and there is a huge comfort in that. Being able to talk freely with empathy and in a nonjudgmental environment can be just the support a parent needs. We share tips, offer advice, seek advice, learn new techniques such as video modeling, talk often about school and IEPs, remind each other to take care of ourselves (because caregiving is a 24/7 job it’s hard to remember that!). Just like our kids feel like they belong, we’ve created a mini family in the support group. 

 So just like my child is a bit unique, as a parent I am unique.  I never quite related to any parenting group, whether it’s a group of parents of twelveyearolds or parents of children with Down syndrome because neither of those quite fit our situation.  But with Dynamic Duals—we aren’t the same.  Everyone is still unique but as a group we find just as many similarities.  We unite. 

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