Parenting a Child with Down Syndrome

By Amanda Brunning, TLC Preschool Teacher & TLC Parent

October is Down Syndrome Awareness Month. My son, Caleb, was diagnosed with Down syndrome when he was born, and our family has since been on a transformative journey as Caleb grows and explores his world, and as we learn how to be the best parents to him that we can be.

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I want to share what I have learned in the past two years about Down syndrome and how my son has changed me. When we got the call about Caleb two years ago (my husband and I were hoping to adopt a child), the first thing our caseworker told us was that he had Down syndrome. Working with children with a variety of special needs as a teacher, I knew a little bit about Down syndrome. I knew that this meant that he had been born with an extra 21st chromosome, and that he would most likely have a list of other health issues, some that would not become apparent until he continued to grow. I knew that bringing home our son meant many doctor trips and multiple therapy sessions each week including speech therapy, occupational therapy, and physical therapy. I knew that he would hit milestones at different times then a typically-developing child. I knew that his speech would be delayed and that I might not hear him say “Momma” or “Daddy” until long after other children had begun using words. I know that if we said yes to this child that we would be busy, but “yes” was the only option for us. To say that was the best “yes” decision we made in our lives would be an understatement, because Caleb has taught me so much about being a mom, being a mom to a child with special needs, and about being a better person.

After we brought Caleb home, I quickly started to learn that there was much that I didn’t know about Down syndrome and that what I did know about it barley scratched the surface. We knew we had a lot of work to do with a brand new infant with special needs, and so we jumped into our new life as it quickly filled up with doctors and therapy appointments. One of the most important early doctors appointments was a visit to the Sie Center for Children with Down Syndrome at Children’s Hospital Colorado. It was there that I learned about all the things that we had to watch for as his development progressed, and all the possibilities of what could happen as he grew. We learned that children with Down syndrome had many increased medical risks. These can include:

• low muscle tone,

• hearing loss,

• heart defects,

• vision problems,

• sleep apnea,

• spin or hip issues,

• thyroid disorders,

• digestive disorders (Celiac’s disease, Hirschsprung, constipation),

• blood disorders,

• epilepsy (infantile spasms),

• swallowing/feeding problems.

I learned that his teeth would most likely come in a different order, at different times, and some might not come in at all. I also learned that many people with Down syndrome had low immune systems and tend to pick up bugs easier, and for some a common cold can result in a hospital stay. This list would cause any parent to worry. I certainly went into worry hyper-drive when I heard all of this. Some of the things in this list I already knew, but many I did not.

As we dove into therapy, doctor appointments, urgent care stops, meetings with case managers for IFSP’s, and meeting other families in the Down syndrome world, I started to learn to never underestimate my son. I knew that he would reach all his milestones, but I quickly learned to not underestimate what he could do. Somewhere along the way, I started to look at all the things he can do and not what he can’t do. I started to see him for him and not in comparison to what the kids around him were doing. I started to see how much he is going to change the people around him for the better, and hopefully the world. He has taught me how to be an advocate. He has taught me how to assume Ability and not Disability. Most importantly, though, he’s taught me how to be a mom, and we’re so grateful we had the opportunity to say “yes.”