My son Alex was born with Down syndrome. We nearly lost him at birth, so it didn’t take us long to get perspective on the Down syndrome diagnosis because, after all, we had our baby. Down syndrome seemed like a piece of cake next to grieving a lost child, so we moved forward, easily wrapping our minds around his bonus chromosome.
Within days after he came home from the hospital an OT with Early Intervention called us, made and appointment, and set up services. She introduced us to many simple things we could do to optimize his development. I giddily glommed onto the exercises, I had a golden ticket, and as long as I jumped through all the right hoops my child would become high functioning.
You’d be hard pressed to find a more dedicated therapy mom. I daily fulfilled my exercise duties, and added in infant massage and baby signs for good measure. By all accounts Alex blossomed. He walked at about 19 months of age, learned signs and words, and his progress became a feather in my maternal cap. I was proud of him and pleased with myself.
I kept track of all things developmental, counting his vocabulary at 100 words by the age of 3, and many milestones near target. Then a few months later, when he started school, it all changed. He regressed, and struggled in all areas. I redoubled my efforts, determined to rebound from the setback I had deemed temporary, but it didn’t happen quite that way.
Alex resumed steady development after interventions outside of school and a classroom change, but he never became that high functioning person I had set my mind on.
Alex has significant sensory challenges and apraxia, and now, at the age of 13, he is right on the border between mild and moderate cognitive impairment.
You might think I’m disappointed about that.
You would be wrong.
While I don’t regret being diligent to maximize the potential of my child, I no longer do so with the myopic approach of ensuring that he falls into a category that seems more desirable. You see, Alex is a phenomenal person. He’s compassionate and empathic, he always asks me about my day, he has rich friendships with numerous students at his school. He has a sense of humor and an athletic prowess, as well as resilience and determination.
Alex is more than his IQ or a random measure like high functioning. He is a multi-faceted person who drinks in life, and contributes to this world. Over these years I have settled into a less frenzied perspective on development. Now I savor and enjoy each stage rather than rushing through it toward an ever elusive goal. I delight in my children where they are while pursuing their best interests and therapies. I enjoy Alex more now, without concerning myself with qualifications like high functioning.
Sporting the mow hawk haircut he insisted on.