Last weekend, I was tutoring a 21-year-old young woman with Down syndrome (I’ll call her Hannah) who had gone through her entire public school career without learning to read. Hannah is an engaging, bright and social person who is living a full life. She likes to dance (Hip Hop), she’s active in sports, and she definitely knows how to rock a party dress. How, I wondered, is it possible that this capable young woman received 18 years of “special education and related services” and never learned to read? When I met Hannah about a month ago, she did not know a single letter name or sound. She knew a few sight words, but because of lack of use, even that was not consistent. In just three weeks of tutoring, Hannah has started to blend sounds to read short CVC words (cat, hat, etc.). It’s always exciting to see this—when reading “clicks” for someone. I have no doubt that Hannah will, in fact, learn to read and that this skill will greatly enhance her life and for that, I am happy. But I couldn’t help but feel a momentary sadness when her mother wondered aloud what life would have been like for Hannah if she had acquired this skill when she was younger.
I had been pondering all of this when the next morning, I tuned in to “This American Life” on National Public Radio. The theme of the show was “long shots” and below is a snippet from the show’s transcript:
Ira Glass: Remember last year’s Kentucky Derby? The horse that won was such a long shot that the Sports Illustrated writer assigned to the race never even bothered to find out about him before the race. He’d lost 31 of his previous 32 races. At 50 to 1 odds, he was the longest long shot ever to win the Derby in over a century. Newsday published a preview of the race where it told this horse to just stay in the barn.
Announcer: As the field turns for home, top of the stretch, it’s still Join In The Dance with a tenuous lead–
Ira Glass: If you watch this race on YouTube — and you should, it’s incredible– the horse that’s going to win is called Mine That Bird. And he is so far behind that halfway through the race, you see all the other horses– they’re in a pack– and then this huge empty space, and then way behind that space is Mine That Bird. Then he picks up speed, he catches up to the pack, and it’s not until the final stretch that he passes every other horse and gets out in front. It all happens so fast that the announcer doesn’t even have time to say his name until it’s nearly over.”
Announcer: Mine That Bird now comes out to take the lead as they come down to the finish. And it’s spectacular! Spectacular upset! MineThat Bird has won the Kentucky Derby, that impossible result here!
Ira Glass: That’s how he did it. The jockey, Calvin Borel, said, “I road him like a good horse.”
Here we are again, I thought—back at expectations. That jockey believed in Mine That Bird, and Mine That Bird knew it. Hannah’ mother knew her daughter could read, and she refused to give up on that dream. Now, at 21 years old, Hannah is picking up speed and I can just see her crossing that finish line.
openbooksopendoors.com 
Beautiful story. I am excited for Hannah’s new journey!
Dr. Whitbread, Thank you for sharing Hannah’s inspiring story. I am a parent of a young adult with down syndrome and I can relate to the topic. My son is about to turn 20 and I will not give up on him developing his reading skills.
Nanette,
Please do not give up! My daughter is 21 and we were told many times that she was not capable of learning how to read. We found the right tutor and she has made great progress the past 7 months! She use to scribble circles nonstop in notebooks and now she writes letters and loves it! She is starting to be able to sound out and write words–amazing! Even kids with down syndrome who didn’t learn how to read in school can still do it!
My daughter too has Down syndrome and she LOVES to read. We were told she would not read but never listened to the naysayers. Reading has opened up amazing worlds for her! If you have a young child, don’t give up, if you have an older child, teen or young adult . . keep helping, keep on. My daughter started reading in the 2nd grade, they even threw a party for her at school. She remains years behind her peers, but she will always love to read. Celebrate reading, it is a huge joy, and an attainable skill. It may not be an easy path, but like all the challenges we’ve had along the way, we have never regretted the time we have spent supporting our daughter with life skills. (and shame on the school system that didn’t help her.)
(and an aside, I love the Derby.,and loved watching MIne That Bird win :))
Thank you for sharing your comments. That is wonderful that your daughter was reading by second grade! I can’t imagine depriving anyone of the joy of reading and I hope that the culture of low expectations will change so that parents won’t face so much resistance.
I had never seen the Derby before (believe it or not) but as soon as I got home that day, I went straight to You Tube and watched the clip– five times in a row. I actually cried, it was so moving.
I’d love to talk more about he culture of low expectations. I was doing my PhD on just this topic (which I later left becasue of a complicated twin pregnancy). Specifically I was looking at just how parental expectations change once they recieve a diagnosis and the relationship between their expectations and the information pass on to them by practicioners (Drs, therapists, educators, social service personnel etc). Big topic, lots to discuss and investigate.
That is a topic that also interests me. There is research (I will have to check to see how old it is) that shows that parents of children with Down syndrome do not read to their children as often or as early as their “typically developing” children. A surprising finding, yet in my experience, this is at least partly a result of information parents receive from physicians and other practitioners. It is appalling to see what some new parents are handed in the hospital after they have a baby with Down syndrome. Incredibly outdated, inaccurate (and depressing) literature. Feel free to email me directly whitbreadk@gmail.com. I will dig up the results of a parent survey I conducted on this topic about 8 years ago. Great dissertation topic!!