A Strong Faith and a Supportive Community Help Special Needs Families Thrive

Over a year ago, my husband and I learned we were expecting our third child. Our other children were 8 and 5 years old at the time, and we were overjoyed to learn that a new baby would soon be joining our already happy family. But that joy was dampened when we received a prenatal diagnosis of Down syndrome. We were shocked and confused, but being pro-life, we resisted the pressure we faced to abort our baby.  

Because of my age, my doctors encouraged me to go through genetic prenatal testing. The original test came back with a 1/230 chance that the baby would have Down syndrome. The next step was to have a Cell-Free Prenatal Screening test.  This is a noninvasive blood test that is more sensitive than traditional tests. Once this test came back showing a strong possibility of Down syndrome, I was referred to a perinatologist, a doctor that specializes in high-risk pregnancies. This doctor strongly encouraged me to abort my baby because he had a high likelihood of having Down syndrome. She explained that people with Down syndrome are “mentally retarded,” have “too many health challenges,” and are a “burden on society.”  I will never forget her archaic, hurtful, barbaric words. My husband and I fought back against this thinking; we explained to the doctor that this baby was a gift and a blessing, and that we would accept and love him just the way he is.

Thankfully, at the same time that I was convincing the doctor to provide good healthcare with a less judgmental attitude, I worked in a very supportive environment during my pregnancy.  I was a religion teacher at our local Catholic middle school.  My faith in God and the support of my family, church, and school community kept me strong during my fight to keep my baby, who we named Andrew Paul. When I shared the news of my pregnancy with my students, their response encouraged me.  “That is so awesome, Mrs. Thielman!” or “Down syndrome rocks! You’re so lucky.” One student told me, “My brother has Down syndrome, and I think it’s really cool that your baby will too.” I find it interesting that these 12 to 14-year-old students were more encouraged about my news than the doctors that pressured me time and time again to abort simply on the basis of my child’s diagnosis. 

My faith community also supported our family in immeasurable ways. One of my priests was at my hospital bedside when I went into early labor and prayed with me until the contractions stopped.  This same priest came to the hospital room a couple of days after Andrew was born and prayed with us as a family. When Andrew had surgery and was in the NICU, our faith community prayed for us. The hospital chaplain visited our baby every day that he was in the NICU. We were also blessed to have a great many meals brought over by friends, as well as help with our older children. Andrew is now nine months old, and we are still supported in so many ways—from encouraging text messages and phone calls to prayers and unexpected gifts. 

Thankfully, my family received immeasurable support to counter the pressure of abortion, and our faith was made stronger by my son’s birth. In fact, I can honestly say it  “easy” for us to have a child with special needs. This is in large part due to the fact that my husband and I have a strong marriage, we are grounded in our faith and enjoy the support of our faith community, and we are able to financially support our son’s specific needs.  

Additionally, my family is equipped with support from other families who have children with Down syndrome. We are also supported by a number of national and state organizations, such as the National Down Syndrome Society, the Global Down Syndrome Foundation, and the Down Syndrome Association of Northern Virginia. 

Every family has unique characteristics, whether or not there are mental or developmental complications, but even with support, those who have a family member with special needs are launched into much more complexity. 

I spoke to a handful of families who also have children with special needs, asking them how this family dynamic affects their family life. Many of those who answered my questions said that their marriage had fallen apart due to having a child with special needs. However, those who had faith in God reported that their marriages became stronger through the ups and downs they experienced. 

Of the families I spoke to, it was unanimous that the siblings of a child with special needs have more compassion and mercy towards others and become more responsible adults. However, these siblings faced their own challenges when it comes to adjusting to life with a family member who has special needs. These challenges include growing up too fast and being generally asked to help too much.

For example, one mother, Kelly Taylor-Nori told me, 

My son (currently 17) was forced to grow up too fast. When he was four, our two-year-old daughter was diagnosed with brain cancer. Over the next six years, he became adept at explaining her condition. From an early age, he developed hyper-vigilance regarding foods that she could have and the environments to which she could be exposed. Looking back, I never wanted those things for him. No child should have to see the things he saw, hear the things he heard, or experience the near death (several times) of a sibling.

Erin Mullen is the mother of CC, the two-year-old 2019 Ambassador to the Global Down Syndrome Foundation, and her older sister, Amelia. “I think sometimes things may not be fair, but there is also good that they will learn from their siblings, such as perseverance, unconditional love, and acceptance. This far outweighs any difficulties they encounter,” Erin shared. “Even at four years old, Amelia sees that CC has more appointments and different health needs.  She may not understand it completely, but she accepts it as fact and has an incredible level of empathy for her little sister.”  

Another mother, Cathy Symington, has three children, including her youngest son, Peter, who has Down syndrome.  “What I have found is that the siblings are better motivators for Peter than I could ever be,” Cathy said. “I instruct, but the siblings motivate.” She added, “It goes both ways, though. Peter has motivated my older two to be more patient and compassionate and to spend more time with each other.”

Personally, I ask a lot of my oldest child, and he steps up to help with his two younger siblings and household chores. I once told him that I would be happy to talk with my husband about starting an allowance for him. He replied that he didn’t want money; he only wanted a day off so that he could rest. My oldest son is definitely the rock of our family, but I need to remember that he is also just a kid. Thankfully, my two oldest children have friends who also have siblings with special needs that they rely on for empathetic support.

Having the support of other families with special needs is so critical to helping parents and families faced with a challenging prenatal diagnosis. Whatever the diagnosis, whether it is Down Syndrome, autism, cerebral palsy, cystic fibrosis, or any other, our country is blessed to have communities that support people with special needs and their families. Those with special needs are becoming more integrated into society and are showing the world that they are capable of anything and proving that every life, no matter the challenge, is worth living. Our strong faith, along with support from our faith-based and special-needs communities has helped our family thrive.  

Erin Thielman is a married mother of three and a veteran of the Air Force, who has worked as a project manager, middle school religion teacher, public speaker, and freelance writer.  Visit her website at www.thinkingcatholic.net.