Told by Lindsey & Daniel Schaupner
Having a child with special needs was not something for which we had prepared. When Alex was born and the doctor told us she had Down syndrome, we didn’t know what to expect. It was a scary time! Being a family with a special needs child. Well, that was for other families. But that quickly became our family, too!
After Alex was born, our doctor gave us resources for our family. We were able to access support almost right away and enroll her in early intervention services. My OB suggested that I reach out to Jill’s House for support as Alex grows older, which was the first time we had heard about Jill’s House.
When Alex was around 18 months old, she contracted RSV and had to be hospitalized for 10 days. She was in the RSV unit of the ICU, where there were several other children with Down syndrome. RSV greatly affects kids with Down syndrome, and we learned that we could no longer enroll her in daycare because she kept getting sick so often. The hospital staff provided our family with additional resources, and that’s when we heard about Jill’s House again.
Since we were no longer able to enroll Alex in daycare, we had au pairs live with us, which allowed our whole family, and especially Alex, to build strong relationships. Although she was not enrolled in daycare to learn social skills in that setting, she thrived at home with au pairs who truly embraced her.
We became close with one au pair and later traveled, as a family, to Germany so we could visit her. We do a lot of things as a family, and our trip to Germany was special. Alex doesn’t just go along for the ride. In many cases, she IS the ride! While in Germany, she was more enthralled with castles and food than with history. We all enjoyed that trip so much that we were able to cater our trip to meet the interests of Alex — German food and cool castles!
When Alex turned five years old, we began the process of enrolling her at Jill’s House. The intake process took some time, but we wanted to be sure she was ready by the time she was the right age to go. We had family friends whose children had been going to Jill’s House and loved it. We knew Alex would enjoy it as well, and we couldn’t wait for her first stay! Alex is now 10 years old and loves staying at Jill’s House. She can be herself, enjoy time with her peers, and get a break from us! We truly appreciate the break, but Alex also receives respite when she is at Jill’s House. Jill’s House is her thing, her domain, and a unique experience for her!
Alex currently spends about three-fourths of her school day in a typically developing classroom, which amazes us! We know that many years ago, kids like Alex would not have been afforded these types of opportunities. The fact that she can have relationships with typically-abled kids is such a blessing. When we watch Alex interact with her classmates, we see that they genuinely enjoy her company. They may not completely understand Alex, and Alex may not completely understand them, but they know how their friendship makes each other feel. We cherish these moments when she interacts with friends at school, in our neighborhood, and at Jill’s House.
After school, Alex often meets a friend, and every time they see each other, Alex says “I know that girl from Jill’s House!”. The connections and friendships established through Jill’s House have made such an impact on all of our lives!
According to the form that comes home with Alex after her stay at Jill’s House, her favorite activities are swinging on the playground swings and swimming in the indoor pool. However, she is beginning to understand how to participate in a conversation. When we asked her what she enjoyed during her stay at Jill’s House, she immediately shared the weekend menu. She loves the chicken nuggets and fries!
Alex is a joy! We are grateful that Jill’s House recognizes how special Alex is, as much as we do. We are incredibly grateful for Jill’s House, not just for our family but for other families like ours as well!
Thank you for making stories like Alex’s possible.