September is Newborn Screening Awareness Month—but in modern obstetrics, much screening takes place weeks or months before the birth. Pregnancy has always been a time of extensive preparation—and of learning that things never go according to script. Not even when specific difficulties are anticipated and planned for.
Cristen Reat, our own Program Director at BridgingApps, knows how it feels to get the initial diagnosis early. “For the first few months after my son Vincent was prenatally diagnosed with Down syndrome, I made zero preparations as I was so shocked! It was a challenge to even know the questions to ask. After I did reach out to other moms of kids with Down syndrome, I was able to visit a school that served kids with disabilities, and I joined a local support group.”
Special-Needs Parent by Choice
Heather Burdeaux, mother of three teen-to-young-adult children including two with disabilities, took a different parenting route. “Starting at age 5, I went each week to help my church teach Bible lessons at a local group home, where I got to know adults with disabilities. While in college, I spent three weeks volunteering and later working at special-needs Camp Barnabas in Missouri. My favorite camper group was the cabin of young ladies with Down syndrome, 10 to 14 years old … and I prayed that God would give me a daughter like them. So Arabella’s birth in 2001 was greatly celebrated.
“After our second child Holden was born, we joked about how we tried on our own to get another special kid, but we were stuck with a typical one.” So child #3, a boy named Darin who has Down syndrome, joined the family by adoption in 2005.
(Burdeaux’s blog, “Persevering to the end, in spite of myself,” includes detailed stories about her parenting experiences.)
While few parents actively hope for the birth of a child with disabilities, many share Burdeaux’s sense of calling to raise special-needs children: there are families comprising parents, biological offspring, and ten or more foster/adopted kids with various disabilities. Many other parents adopt one or two exceptional children.
A World of Surprises
Whether your children are biological or adopted, and whether you have several months or less than a week between diagnosis and birth, the only thing you can really count on is plenty of surprises. Which sometimes begin with additions to the initial diagnosis. The prenatal discovery of Vincent’s Down syndrome was followed by diagnoses of “autism, a visual impairment, and several chronic health conditions,” says Reat. “Preparations for his arrival included figuring out how serious his heart condition was.” And even though “I thought I had prepared for the Down syndrome, the biggest unanticipated challenge was how unlike many kids with Down syndrome he turned out to be! It turns out he is a pretty unique guy and doesn’t fit a particular ‘standard’ pattern. Parenthood is all about being flexible, and I have had to be flexible in ways I hadn’t even imagined.”
Burdeaux had a similar experience when Darin’s manifestation of Down syndrome played out “kinda opposite” to Arabella’s. For one thing, Darin (like Vincent) has autism in addition to Down syndrome; and autism tends to counter some “traditional” Down syndrome traits, particularly cheerfulness and outgoing personality. “Darin didn’t do well outside the home, so we tag-teamed events with one parent staying at home with him.”
When a special-needs family has to interact with the larger world, unexpected challenges increase. Darin’s early middle-school experience was poorly individualized and traumatic, generating increased clinginess (and some angry acting-out) at home. Reat notes that one of Vincent’s “biggest challenges is sensory—he does not do well with lots of people or noise, so his educational and recreational environments need to be small and with minimal noise.”
But the Blessings Are Worth It
Despite these challenges and more, parents of special-needs children find their kids giving back in unexpected ways.
“I am a better parent because I have had to adjust my expectations over and over again,” says Reat, “to change what I thought was my path, to think creatively in inconceivable ways, to become a better problem-solver than I otherwise would have been. Vincent’s sense of humor is also hilarious, and I have had a front row seat to how he affects others in our lives. He is the hardest worker I know, and I love his earnestness. His uniqueness and gentle spirit are true gifts.”