As a pediatric nurse practitioner, I remember frequently telling my parents that they know their children better than I ever will. Now, as a mother of a little girl with Down syndrome, I know that to be true. I will always know my daughter better than any doctor, therapist, or teacher. I know what my daughter is capable of.
My daughter Ellie, at age 2, is full of spunk and mischief. She pretends that she cannot hear me when in reality, she is ignoring me. I have been told by many that Ellie “just doesn’t understand what you are asking her” when in reality, like any two year-old, she knows exactly what she is doing. I am not saying that I know all the ins and outs of Down syndrome, that I know every medical issue, or that I know all of the therapy exercises that a child with Down syndrome needs, but I am saying that as her mother, her number one care provider, I know my daughter the best.
After Ellie was born and the label of Down syndrome was slapped across her forehead, I heard many things such as she cannot or will not be able to do x, y, or z. Confused and aggravated, I started to research. Some of it was medical research, but I looked a blogs and web articles. I devoured those articles and stories written by other parents of children with Down syndrome. From them, I learned to have high expectations. Shoot high, provide opportunities, and you just might be surprised by what your child can do. I have held onto that belief for the past 2 years. Ellie can and will do amazing things. Do not let your poor expectations hold your child back.
I remember sitting at Ellie’s Early Intervention meeting 6 months ago discussing goals and I timidly said “I would like Ellie to know her primary colors.” Ellie’s therapist of 2 years said to me “I do not think that is an appropriate goal for Ellie.” My interpretation was “Ellie will not know her colors.” To this day, I do not know if that is what she meant exactly, but I knew my daughter was ready and could learn her colors. It may take her a bit longer than typically developing toddlers, but she would learn them.
After that meeting, I took matters into my own hands and I turned learning into a game. I used the Flaptastic Colors board book to gain Ellie’s interest. I labeled everything we encountered. They were never just pants. They were pink pants. A red apple. A black cat. I would pair the sign with the color. As I sat with Ellie working on the Melissa and Doug Shapes puzzle, I asked her which one was green and she handed me the green circle. I asked again which one was purple and she handed me the purple star. A month later, I watched as Ellie read her Flaptastic Colors book. She was sitting looking at the yellow page signing “yellow” and saying “oh.”
Since then, Ellie has continued to amaze me with her capacity and willingness to learn. I think back to when Ellie’s therapist told me it was an inappropriate goal and I realize now that she didn’t know my Ellie the way I know her. It is as I always told my patient’s parents, you know your child best. You must also push the limits and have high expectations for you just might be surprised by how much your child is capable of.
Photo by NASA Goddard Space Flight Center.