What Parents of Children With Down Syndrome Want Therapist to Know

This past week we had the opportunity to be featured in Pediastaff's newsletter.  I am so grateful that the team at Pediastaff cares enough to what to know what parents of children with Down syndrome what their therapist to know.  Thank You to all the therapist who have helped make a difference in our children's lives. 

      As a mother of a three-year-old daughter with Down syndrome, I have attended many different therapy sessions.  Over these years, I have learned some of the most important information to help Adeline from her therapists.  Some of her therapists have truly helped make a difference in Adeline’s development.  I will never forget these people or the information they empowered me with to help my daughter.

     When parents have a new baby with Down syndrome, they immediately begin a journey into the world of therapy—and, most times, they begin this journey while still in a state of shock and confusion.  Many times parents are not even sure what they need to do to help their child.  When Adeline was born, I had not had a prenatal diagnosis, so along with the normal new-child adjustments; I was processing the distinctive needs of my new baby. She was two-weeks old when I brought her in for feeding therapy; I had never been in a therapy center and did not even know what feeding therapy was.  I was confused, shocked, and tired.  

     The therapist I saw was the first person to help me on my journey of helping Adeline.  I am grateful that she took the time to explain to me Adeline’s feeding needs and why they were different.  I did not understand low tone and why Adeline was responding the way she did.  This therapist held my baby, explained to me why Adeline was tiring so quickly, and told me my baby was beautiful and that it was going to be O.K.  I sure needed that.

Most of the therapists who have helped Adeline and me have displayed exemplary traits that enabled them to significantly encourage and help our family.

     The following are the things that have meant the most to me as a parent of a child with Down syndrome:

1.          Use people-first language.  Adeline is a little girl who happens to have Down syndrome.  Please, she is not a “downs kid.” She is my little girl who I love with all my heart and I believe that she could travel to the moon if she wants.

2.          Respect the decisions made by the family.  We are a homeschool family--not everyone understands that, but I intend to homeschool Adeline right along with my other children.  We have chosen a route that is not typical, but I know it is going to be good for Adeline.

3.          Please consider me as a teammate.  I don’t want to just have our one or two therapy sessions a week and that’s the end of it.  I know that most parents want to help their child everyday.  I need help creating a daily schedule for Adeline.  Please treat me as a co-learner and share knowledge, materials and books with me.  Some of the best materials I have on hand a therapist shared with me.

4.          My child is just a little girl who wants to have fun.  She will respond best if you sing songs with her or make the session into a game.  Interact with her; share a laugh!  It is important to me that Adeline receives the treatment she needs but she will receive more if she enjoys being with the therapist.

5.          Please treat Adeline as an individual.  Not every person with Down syndrome will need the same treatments. Not all children with Down syndrome fit a set developmental pattern. She may need more of a therapy; she may need less—tailor her plan to her, not to some master therapy plan.

6.          The most important thing I want therapists to know is keep your expectations high.  I believe Adeline can do all things, and I want to work with professionals who believe the same.  We don’t need someone to help us think “realistically;” of course, our expectations will adjust from time to time—the same way expectations shift for parents of typical children.  Parents of children with Down syndrome have already faced a lot of negative opinions; we need someone to come along side of us and help us cheer our child on to greatness.  

   When parents of children with Down syndrome first begin their journey, they face a maze of new acronyms, doctor appointments, and therapies. A good therapist can help parents navigate this system and become their children’s best advocate.      In the past three years my Adeline has learned to do so many amazing things; she is developing and growing every day.  I am grateful to all those professionals who have come along side me and Adeline, who have offered sound instruction, an open book, or an encouraging word. Who’ve held her hand, heard my pain, and walked a bit of our journey with us.  For you, I am so grateful.