A Love Letter to Our Little School

Just a few short weeks ago, Ben packed his little preschool backpack and said so long to our favorite place in the world, the Frankie Lemmon School. I said a while back, before he even started, that this was a place that deserved its own post. Well, my time has not been my own over these past few years, so it's long overdue, but here it is.

Pre-FLS Ben, having no idea about all the goodness about to come his way

Before Ben began his time at Frankie Lemmon School, we heard at various times from various doctors that he would never walk, never talk, never eat, never learn to read or write, never live independently. We were still hiding in our uncertainty, still hearing those devastating words ringing in our ears: "Ben will never be normal. Nothing will ever be normal." No parent wants to hear those words, but it is an especially bitter pill to swallow when nobody can tell you what you can expect. Although chromosome disorders in general are quite common, each individual disorder is rare. When we finally received Ben's diagnosis after years of piecing together different complications and delays, we learned that his was the 40th diagnosis of that particular chromosome deletion. Globally. Ever. (Now, I'm sure that there are far greater numbers that remain undiagnosed.) We felt as if we were looking for a soft place to land in that storm, and did we ever find one. 

We like to say that for each year at Frankie Lemmon,  Ben conquered a new "never will he" milestone, but he also made progress in every area each day. Thanks to the truly amazing group effort of every single person at Frankie Lemmon School, by the end of his first year, Ben walked without help of a walker and made significant progress in his eating and his communication. 

Ben taking some of his first independent steps at the end of the year program (3 year olds)

As Ben started his second year, we were so amazed at the progress in Ben's communication via picture books and iPad use that we started to accept that even if Ben could never talk to us, we would all be just fine because he didn't really need to speak to communicate with us. No sooner did we get comfortable with that idea than he decided to start talking, and he hasn't stopped since. We can't keep up with his language explosions, and now he spells, reads, and graces us with frequent concerts of some beloved FLS songs.

Ben's now well known love of the iPad started when he was three.
We believe that inclusion of the iPad in instruction helped Ben learn the alphabet, learn to spell, and eventually learn to read at a level well beyond what any doctor told us he would ever be capable of doing.

Thanks to Frankie Lemmon School, the little boy who would never do anything is a walker, a talker, a singer, a reader, an iPad genius, a number lover, a jumper, a climber, a hamburger aficionado, a hugger, an emerging writer, a music lover, a brother wrestler, and a normal little boy. That's right. A normal little boy in a normal family living a very normal life.

Of course all of the accomplishments Ben made during his time at Frankie Lemmon School blew us out of the water, but there is something greater at work there. I remember something Janet Sellers told us when we visited the school before enrolling Ben. After meeting all of the staff and students, I mentioned that it seemed like everyone truly belonged there, that nobody seemed to act as if this was "just a job." She got a little tear in her eye (and this is not a woman who cries so easily) and replied, "No, someone who felt that way wouldn't last long around here." The staff at Frankie Lemmon School is truly a family. They are hope givers and miracle workers (but I bet they would hesitate to call themselves so, even though it's altogether true). I sent Ben to school each day knowing that everyone from the cab driver to his classroom teachers and therapists, to the office staff, the volunteers, and our beloved custodian, Matt (Seriously, Ben hugged him on the last day of camp last week and said, "I love you, Matt, I love you!") had genuine concern for Ben's well being and abilities. I also know that the love doesn't end when your time there does, and it goes both ways.

ALL of the Townsends love everyone at Frankie Lemmon School

Thank you for being the spark that helped our little boy become the person he was meant to be. Thank you for shining a light on him and proving that there are no limits. Thank you for loving our baby and making him feel important and special. Thank you for taking care of our entire family in ways you might not even realize you did. 

Ben with all three of his classroom teachers: Miss J, Forbis, and Miss Caroline

I wish I had a picture of Ben with everyone from Frankie Lemmon, but he would be the first to tell you that he is not really one pose for a photograph...

End the Word. Please.

Dude, that is so retarded.

Do you ever say this, think it, hear others laugh as they chide their friends with it?

To those who occasionally say something or someone is retarded, I implore you to make a change to your vocabulary. “Retard” and “retarded” are never, ever used as compliments. These words were long ago hijacked from medical use and have since taken up what seems to be permanent residence on the playground, in our schools, in our homes. We have grown up with it and indifferently passed it on to our children because it doesn't carry the significant weight that other slurs now do. What's the difference? This is a population of people who most times cannot fight back. To realize the pain they and their families experience as a result of hearing these words and to continue to use them is the most cowardly form of bullying. You will still hear jokes like, "I can count to potato." Am I supposed to be amused? If this makes you laugh, please consider your place in this world. And please understand that my son is not a punchline.

Here’s the thing. I used to be one of you. I didn’t give the use of these words a second thought, because I would never have actually said something cruel to someone who had Down syndrome, developmental delays, cognitive delays, autism, or just “wasn’t quite right.” After all, I didn’t mean “them.” I didn’t even give much consideration to how deeply words can hurt until Ben Townsend came into the world. After that? Well, everything changed.

Now listen, in my heart of hearts, I truly believe that most people don’t actually feel hatred or disgust toward the people who make up this population. Most of the time, people don't feel much of anything unless such a statement directly affects someone they know and love.  They really aren’t trying to hurt people who have special needs or their families. To those with open minds and hearts, I want to tell you a little bit more about Ben.

Ben was Bumbo-sitting at his first birthday party

I distinctly recall a moment when Ben was 13 months old. As I helped him sit up, which he was unable to do without support at that time, he struggled to play with a toy that interested him. While my heart leapt that he was finally(!) interested in a toy, I felt the melancholy nagging of doubt. Around that same time, we listened as various physicians told us that Ben might never walk, never communicate, never eat without assistance, never be able to do anything independently. As a mother just trying to survive the late-night cry-in-the-shower sessions and get through the next day, hearing someone tell you that you might never hear your child call you Mama is a devastating blow.

When I look at Ben now and think over his life so far, I’m amazed by his strength and determination, the effort he has made to master simple tasks that you and I probably take for granted. The boy who would never do anything? He is five now.  He reads to me every night, rarely missing a word and using inflection I could have only dreamed of hearing from my former students. He can count to 100 and beyond by 1s, 2s, 3s, 5s, and 10s. He understands adding and subtracting. Not only can he walk, he can also run and flip and jump (and tell you exactly how many times he has jumped). He can sing the alphabet A-Z and Z-A. He can spell touchdown, Kentucky, eighteen, orange, and neighborhood. We could never take him to sit in the audience at a spelling bee, because he would win from the crowd. He can play football with his brother, and although he has a long way to go to catch the ball consistently, he can tackle all of us Polamalu-style.

I'll race you back to the pool!

Book Club meeting with friend Simon

Ben has worked so much harder than you or I ever did to learn to walk, to talk, to read, to eat, to perform fine motor skills such as writing or pulling up his pants. When I think of his achievements from that perspective, I stand in awe of this little boy.

Here’s what I hope you will take away from this: Everyone – EVERYONE - deserves your respect until they give you a reason that they don’t. One thing I know for sure? You will never find a population more worthy of your highest regard.


Today, March 6, 2013, is designated as a day to spread the word to end the word. Please join us! Take the pledge. Tell your friends. For Pete's sake, tell your kids! Thank you, thank you, thank you.