Therapy for all the Therapies
Navigating all the "things" for kiddos with disabilities
I have two children with disabilities. My son has Down syndrome and my youngest daughter was recently diagnosed with cerebral palsy. When you get such a diagnosis, you then get to participate in a parade of therapies led by specialists with more letters after their names than the Letter People.
Part of the parade includes you on a tightrope, walking the line between how much is enough and should I be doing more? You balance this line while juggling all the forms, the IEPs, the insurance, and the agencies.
You call the agency to check on the paperwork one of the Letter People faxed in two weeks ago. They can’t find it. A week later you call and talk to a different person at the agency. They find it in the queue which takes three to six weeks to process. It’s been three weeks. Three to go.
Many times you feel as though these agencies lack what’s supposed to be inherent in their name - agency.
But you, you are supposed to have the agency to get all the right therapies lined up to achieve the outcome which is based on your own expectations of how to survive in this scary world.
How much speech therapy is enough if the goal is verbal communication? How much do you uproot your schedule to get to the therapies when you have three kids at home and work full time? You work for yourself, which is a blessing but your heart aches for the many others that don’t.
You take your daughter to one of the highly-renowned Letter People for a second opinion. You want to make sure she can grow freely, stand tall and make sure her diagnosis doesn’t impact her long-term health outcomes. You want her to have a job and be a mom. So you go. Something is off with hip alignment and spinal curvature. It’s very minor and very picky, the therapist says. But it’s there. More specialists.
You wobble on the tightrope. The bouncy cushion down below calls you. “I wish I could just let this all go and let it be what it is! I can’t spend my life in all this therapy and I don’t know if my kids should either and to what end?” You think to yourself as you look longingly down on those red and white stripes of letting go.
The tightrope snaps and so do you. Reality sets in and presents you with the pit that’s on the other side of the tightrope - isolation, doom, failure, and creepy circus clowns. “You have to keep going! You want your kids to be happy! Verbal communication makes getting on in this world easier! Being happy means having a place and purpose in this world and good health! You cannot let them down!”
You realize you need some help. You need someone to point out that you’ve made the tightrope 60 feet in the air, when it’s really only six inches off the ground. You can step off safely and make decisions that feel right for you and your family given the current circumstances. You need a therapist to navigate all the therapies.
When you get off the tightrope you see the small miracles that surround you. The sound of your son saying “Mom!” with pride, happiness and delight when you walk in the room. The sight of your daughter scaling the pantry to get a snack. The two of them running up and down the driveway in fits of laughter in the late evening sun. The Letter People help, to what extent you don’t know, but you do know that you’re the ringmaster of this beautiful circus.
Author’s note: we are very fortunate to live in Cincinnati, home of the nation’s leading children’s hospital. We work with loving, smart, compassionate therapists AND sometimes it’s a lot. Both are true.
My talented friend Pepper Stetler captures a lot of the themes I talk about in this piece in her article featured in The Wall Street Journal in advance of the release of her new book, A Measure of Intelligence, One Woman’s Reckoning with the IQ Test. I highly recommend giving the article a read and picking up a copy of her book.
For those of you raising kiddos with an intellectual or developmental disability, how do you navigate all the therapies?
What do you look for in a good therapist?
How do you find a balance between more therapies and just letting it be?
What letters would you add to the end of your name?
It's all so much Emily. Thank you for your generosity in sharing your experience.
Hi, I have 2 autistic kids, one who has therapists after much fighting, and I'm also an occupational therapist myself working with neurodivergent kids.
It can definitely all feel too much. My husband and I have started talking about how much capacity we have, 6 years in, for more therapy homework when just looking after our kids basic needs takes so much, let alone the endless SEND admin.
Sometimes it's good to pick what the priority is and pace ourselves. Otherwise it's too much for our kids and us!