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.

Caleb.jpg

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.”

 

Switching Hats: Teacher to Parent

By Amanda Brunning, TLC Preschool Teacher & Parent

TLC Infant Lead Teacher Debbie Van Thuyne with a friend

TLC Infant Lead Teacher Debbie Van Thuyne with a friend

I have been working with and teaching children with special needs and their families for the past eight years. I have been through many emotional roller coasters with parents and have been a part of many conversations where parents just needed to vent and I was happy to listen. I tried to be as much help as I could, but before becoming a parent myself, my view was limited and I couldn't say that I knew what it was like to parent a child with a disability full time.

Teachers in early childhood have kids from four to eight hours a day before they go home and we're off duty. We work with the children in a controlled setting and on a consistent schedule. We have extensive training and on-hand tools that we can draw from and utilize when a child is having a hard time. Life outside the classroom - with families, in public places - is very different and far more unpredictable than classroom life. As a teacher, I have preparation and immediate assistance for handling trying situations and behavior on top of my primary job of helping teach children educational skills and positive social behaviors,  but when a person becomes a parent, there's very little preparation for the next 18+ years of caring for and raising children of any ability. Children don't come with handbooks, and parents have to learn as they go.
 
My husband and I had been going through the adoption process for several years, and nine months ago we were matched and placed with a 7-month-old little boy with Down syndrome. I would love to say - with all of my experience and degree in early childhood and special education - that I was prepared. In truth, I did not feel prepared at all. I knew that this beautiful little boy would need pediatric therapies and that TLC would be the perfect away-from-home-home for him when I went back to work, and that the therapists would work with him both at our house and in the TLC infant nursery, and that was a huge relief when I felt overwhelmed. I was so thankful for all the help from my co-workers in getting his therapies and early interventions in place and for helping the process of transitioning our son into our home go as smoothly as possible.

After he arrived, every day was a new experience and a new visit to a new doctor. In the first few months of having our little boy we saw so many different doctors and with each doctor we felt overwhelmed at what this new doctor could say or what that visit could bring. His therapist became my go-to when I was unsure what advice to take, what direction to go, or when I was trying to figure out if something going on with him was normal for his diagnosis, or when I needed guidance on what I needed to do to help him grow and develop. His infant teacher at TLC is my other go-to when I have a parenting/infant question, and I no doubt ask her a million questions a day. Debbie (the TLC infant teacher) has also listened to me vent about everything from difficulties getting him to sleep to doctors appointments that we came away with no answers or nerves about surgery. These people have become part of our support system and we are so thankful for them. In stepping into the role of parent of a child with special needs, I'm finally getting to walk in the shoes of the parents of kiddos I've worked with throughout the years, and I feel even more connected to them and struggles that come with parenting young children.
 
Switching hats to the parent roll has opened my eyes to so much of what families with children with special needs can be going through. I hope that my new roll as this beautiful little boy's mommy can help me grow as a teacher and better support the children and families better that come into my classroom.

Through all the struggles, the late nights, spit ups, and parade of questions, I wouldn't change a thing, and I'm so grateful to my TLC support group.