When our daughter Penny was diagnosed with Down syndrome at birth, I experienced many of the emotions that are typical for parents who receive unexpected news about their child. I felt guilt, sadness, and fear, especially when I looked ahead at what seemed like an unknown and difficult future for our family.
Back then, one of my biggest sources of sorrow stemmed from my belief that Penny wouldn't share my love of reading. It feels almost silly in retrospect. As a mom, I've learned that I love my kids not because they enjoy the same things I enjoy but simply because I love them. Now, with Penny 9 years old, I no longer think of reading as essential to our mother-daughter bond. But for the early months of her life, Penny's ability to read, and the potential for her to love reading, seemed critical to our future.
In time, I let go of my insistence about reading. I realized how much I treasured the communication I had with our daughter even as an infant, without so much as a spoken word between us. I realized how much the physical acts of caring for her day in and day out informed my love for her. I realized no particular activity, no matter how much I loved it, could produce or reduce the pride and joy she brought us.
I'm glad I learned this lesson early on, for it has mattered with all of our kids that I not try to force them into a mold that I have envisioned for them. My job is not to construct their identity but to nurture their interests and inherent giftedness. Still, I wonder whether I would have experienced less fear and sadness over Penny's diagnosis if I had started out with a better understanding of the learning possibilities for kids with Down syndrome.
Historically speaking, doctors and educators assumed kids with Down syndrome couldn't learn much. But in recent years, we now know that kids with Down syndrome can learn all sorts of things. In particular, they can learn to read. And all this is aided by parental advocacy, research, and legislation that includes kids with Down syndrome in classrooms across the U.S.
Recently, Down Syndrome Education International, a UK-based non-profit that serves kids with Down syndrome in over 170 countries, released a report on the significant gains made in reading proficiency by children with Down syndrome. DSE identifies the particular learning barriers for kids with Down syndrome, in order to devise support for teachers and parents to overcome those barriers. The kids use DSE's targeted intervention strategy, which includes reading and language-based interventions and a teacher handbook to implement the program elsewhere. Nearly all the children made statistically significant gains in four areas: single word reading, letter sound knowledge, phoneme blending, and expressive vocabulary. And the younger kids received the intervention better.
It turned out that I didn't need to worry about Penny learning to read. Penny has always loved books, perhaps simply because she grew up in a household with parents who love reading as well. Her love began with her acquisition of sign language and her desire to sign along with her favorite picture books, and then it progressed to her memorizing word-by-word the contents of Curious George books. Eventually, she started the slow and steady effort to learn how to read on her own. And now, Penny reads all the time. She reads in the car, before school, after school, before bed. At times, I sympathize with my own mother, when I have to tear my daughter away from the book she's reading so that she will help set the table or take a shower or go to sleep.
As heartening as one anecdote might be, the work of organizations like DSE is more significant in proving that kids with Down syndrome can learn, and providing teachers and parents the tools to make this progress. So parents of kids with Down syndrome can and should still assume they are capable of reading and learning.
Now my excitement for Penny isn't that she will now get high scores on standardized tests or somehow "measure up" to her typical peers. It's that she gets to experience the joy of finding herself within classic stories, that she begins to understand her own life and the world around her in terms of the stories being told, and that she experiences the great delight of curling up every day with a good book.
Amy Julia is the mom of three kids who love broccoli and hot dogs, and who ask for lollipops every day! Her guilty pleasures are Chardonnay and Diet Coke. She is also the author of Small Talk: Learning from my Children about What Matters Most and A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. Visit her at amyjuliabecker.com.
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Photo of Penny reading courtesy of Amy Julia Becker