When my middle son Avery was diagnosed with Down syndrome at five days old, my Dad said, “Ah, well. He’ll be one of the better ones. He’ll be the best.” It felt like a kindness, and I remember being buoyed by the thought. He may have Down syndrome, but by God, he’ll still be the best.
Fast forward six months and Avery had his own rolodex of phone numbers — for a speech therapist, a physical therapist, a family support specialist, a pediatrician and our family practitioner. His contact list also included an occupational therapist, a doctor of chiropractic, a craniosacral therapist, a naturopath, and a healer.
We had “therapies” every day, sometimes twice a day. When we weren’t with a specialist, I was working on Avery’s “program” at home. Every minute, every movement was an opportunity to engage him in his development and expand his potential. But the idea that I had control over it all made me a little crazy, and I lived in a perpetual state of worry — was I scheduling enough, teaching enough, doing enough? Should I be doing more?
Every three months, Avery was evaluated. The affect of constantly comparing him to “normal” left me feeling as if we lived in Deficit Land. We were always behind, of course, but the tougher question was, by how much? And were we gaining, or losing ground?
It all came to a frenzied head one afternoon when my friend Emily stopped by. She reached out to hold Avery (she is a great fan of his), and instead of leaning into her, as was his way, he tucked his head into my neck and burst into tears.
After running through all the usual reasons for crying, an idea born of mother’s intuition came to me — Avery was burned out. At this age, my other boys thought the world was made up of mommies and daddies; Avery’s world, to him, was made up of people who wanted something from him. In a word, therapists.
The realization came to me with great sadness. This wasn’t what I wanted for my son. If this was where being the best had gotten us, it was time to rethink my goals for him, and for me as his mother.
I know we need to measure; we live in a measuring world, and many of his services were dependent upon him having deficits, things like this: at twenty-eight months, he takes a few steps, here and there, but he is not really walking. He says a few words on occasion, but he is not really talking. These are things his brothers did by twelve months. It’s a huge gap, if this is what we measure it by.
But how to measure Avery’s love of books? Or the fact that he is the only one of my children who can keep a musical beat? He has a great social intelligence — Avery is the first one to say (sign) sorry when someone is feeling wronged or sad. And Avery is the first one to recognize when someone needs a smile, even if the man is tattooed and wearing a Hell’s Angels jacket. Avery is the first one to offer a hug.
He has character. He has integrity. He knows what he’s about. These are the things that are harder to gauge, these things are harder to quantify. But these qualities are what make Avery a unique and whole human being. It’s not the measuring that’s wrong, it’s what we choose to make important. And I am his guardian, his protector. It’s up to me to make sure his life has meaning and balance, a fact that I had overlooked in my quest to be the best.
And so Avery’s rolodex is tucked away in the cupboard, along with the cookbooks I never use, the scotch tape and the rubber-band ball and the kitchen twine. He has physical therapy once a week because he needs it, he has music class once a week because he loves it, and the rest, well, we’ve developed a new plan. We’re leaving our schedule open, so that we have plenty of time to build blanket forts, bake cookies, and eat snow. I am giving my son his childhood back, and if it means we drop right out of the race, so be it.
18 replies on “Perfectly Imperfect”
What a lovely essay … Avery is lucky to have such an intuitive and loving mother!
I think mothers of all children must face this in one way or another. I know I worry about my niece and nephew because their schedules seem so hectic – much busier than a lot of adults I know. I applaud you for your insight into what’s best for Avery and your family. We only get to do childhood once in this life and so many have to grow up much too early. Childhood is magic time – it’s so wonderful that you’re honoring that.
Jennifer Graf Groneberg has written a beautifully about her child Avery, his special needs due to his Down’s Syndrome, and his most important need: that to be a child. I was struck by her insight into the pressure we put on children to “be the best” and I cried when I read about Avery’s kindness. If only we could all be so kind. Thank you for the opportunity to read this piece.
Thank you for this beautiful post. I like the idea that you can say “no” to some therapies and specialists, but still say “yes” to life and to your son and to all he has to offer. Wonderful!
Yes, Yes, Yes, Jennifer!! I so appreciate this reminder not to try to push my daughter’s evolution into some specific form I think it should take. The seed of who she is and can be is perfectly formed, all I really need to do is nurture it. This has been demonstrated to me over and over again in my life with her so far, and still I forget it. Thank you for this beautiful reminder!
The title says it all: perfectly imperfect. Jennifer shares what she knows about her son and comes to an epiphany about what he really needs. She also shows how our measurement crazed culture can diminish each of us if we let it, not just children whose development differs from their peers.
Thank you for anchoring the essence of what childhood should be, and showing other parents how they can give their children back their childhoods. I felt the perfection of Avery through your journey to awareness. This is an article all parents need to read and take to heart. Bravo.
I applaud you, Jennifer, for realizing what’s important for your children and your family and acting on your values, not society’s. So many children are pushed relentlessly into an early adulthood, taking on the pressures and concerns of too much competition, too much measuring and not enough good plain fun. By losing that rolodex, you’ve empowered your children to let childhood be the magic time it can be – a time like no other in our lives. You are such a wise woman.
Really, really beautiful.
congratulations, Jennifer! on a great opinion piece that made me think. I love it! I have always felt that there are different forms of intelligence, some of which are not nearly as appreciated by the “mainstream society.” I am one of those left-handed people who is probably operating from the opposite brain hemisphere as most other people…commonly my type is referred to as “right-brained.” your point on how to measure Avery’s perceptive sensitivites…exactly right! these gifts, and the gift of daydreaming and seeing the whole picture as opposed to linear compartments, ought to be just as loudly celebrated as the more “traditional” types of gifts. and I totally agree with the other commenters: good for you to be your own woman and mother, and not buy into society’s insane push toward that nonsensical, mythological finish line. how’s this for a rant? great job, Jennifer! and thanks for all you do…
check out http://www.disabilityisnatural.com
It is a great site, and all about doing what you’re doing, Jennifer. The creator of the site has a book by the same name. She got tired of “therapizing” (my word) her son, who has cerebral palsy, and ignoring life with him.
Keep on building those blanket forts–my favorite childhood memory.
Kids have so much to teach us if we’re paying attention. Avery has a very smart mom!
Profound and beautifully written. Thank you.
I am going to try to remember your insight as I schedule our next month of activities.
You are right on with your thinking. Our kids need time to be kids and not “therapized” every minute of every day. I had to learn that lesson too.
I think we may have reached similar conclusions by default. I’m glad that yours was by design.
oh, i so love this! it’s what we are balancing over here with fluffy, identifying what’s really essential in the world of therapy so we have gobs of room for what’s essential in the world of simply living, exploring, and becoming. thank you for articulating it so well.
I love this post! We need to be talking about this more often. I think so many mothers with special needs children must feel the same way but are afraid to talk about it for fear of sounding, in some ridiculous way, like a parent that doesn’t do enough. We all talk so much about the importance of inclusion and our child being treated just like every other child. Yet, by stripping away their childhoods due to chronic appointments, we are doing just the opposite.
Thank you for writing such a wonderful heartfelt piece. If only we could all be as kind as Avery. Having worked as a therapist for a number of years, I’ve spent lots of time thinking about the way that therapy replaces not only love and attention, but the fun of family life. You say it so well!
what a beautiful piece. it brought tears to my eyes. what a lucky family you are to be there for each other so alertly.