They continue to be some of my most powerful teachers.
For those of you who are regular readers around here, you’re well aware that 4 of 8 is hearing impaired and 7 of 8 experienced a neonatal stroke. Maybe I write a little too much on those topics. Maybe not enough.
All I know is it’s part of our norm. And still partly startling. And partly so familiar I don’t think about it that much.
Until I do. Think about it. And there are days it’s always on my mind.
A regular topic of conversation in our house is therapy. 4 of 8’s Auditory Verbal Therapy, the controversial and, for us, incredible approach that has allowed to 4 of 8 to use audiological technology and training for listening and speaking, is a big part of our family lifestyle. And 7 of 8’s weekly physical and occupational therapy sessions make up a big part of our scheduling and financial terrain.
We are thankful and grateful for the individuals who have worked with our girls through the years. Incredibly so.
But we’re also fully aware that therapy has its limitations. Limitations of time. Limitations imposed by the girls’ disabilities. Limitations of just how much we can actually pull off each week while meeting the needs of six other kids.
And the biggest one…the breadth and width and height and desire or lack thereof that each girl brings to the equation.
Because at some point in the journey, the personalities and wiring of each girl has played a significant role in the application of therapy.
And then there’s me.
I have this theory. A theory that competes with my desire to have the girls be the most prepared, coached, equipped kids in the therapy room. And that theory, no, better yet, conviction, is this:
There is more to each of these kids than their challenges. And I won’t make their childhoods solely about getting to the next level of diction or vocabulary for 4 of 8 or be singularly focused on ‘fixing’ 7 of 8’s bum arm and weak leg.
Because they are each far more than those hiccups.
There has come a place with each of them, a time for me to back off my vision and goal setting and to honor each of them. To ask. To ask an important question:
“What are your goals? What do you want to work toward in this experience?”
4 of 8 has achieved what she wanted. She wanted to be able to sing, to listen to music, to converse with friends and understand what was being said in a variety of settings. She has no desire to ‘pretend’ that she isn’t hearing impaired; rather, she has found a place of happiness being just who she is, delighting when people are startled to learn of her hearing loss, understanding and informative for people who notice quickly. We check in with her beloved therapist from time to time. We continue to work on a few things. But we honor 4 of 8’s achievement and we’ve let her take a lot of the lead in the last couple of years.
7 of 8 has been a challenging therapy patient, even though she’s been at it for over 3 years now. It took a good 12 months for her to decide she liked her physical therapist. 7 of 8 has a halfhearted approach toward occupational therapy. We’ve cajoled, bribed, begged. She has made great strides, frustrated her therapists, thrown little fits, experienced powerful victories.
She’s just four and a half. You would think that I should be the one completely driving this thing still.
But I finally thought to take a page from my own parenting playbook. And I sat down with her a few weeks ago for a conversation. She is one of my most verbal children, adroit and knowing, chatty and philosophical. And quite a conversation we had.
Because I asked her, straight up, with no baby terms or hedging, what her goals are, what does she want to do with her arm, her hand, her leg.
And she answered immediately and clearly.
She said, “My goals are I want to pet Katie (the dog) with my left hand. And I want to pet George with my left hand. And I want to use the remote with my left hand. And I to eat with my left hand. I want to hug people with my left arm. And my other goal is to put food and candy and candy I get from Trick-or-Treating in my mouth. And I want to play with my left hand and clapping with my left hand and waving with my left hand and cutting with my left hand and putting food in my left hand and waving hi with my left arm. And holding babies. And, um, helping you with my left hand.”
She wants to use her scooter by strengthening her left leg. She wants to run fast.
She has goals.
Her goals actually incorporate all the technical stuff we’ve been trying to get at. Her goals are driving toward dexterity, flexibility, strength. She asks me to do myofascial release on her left arm, a technique that helps release muscle tightness. Over these last few weeks, she has spoken often about how various activities she is engaging in are helping her with her goal list.
And she continues to add to her list.
The strides she has made since our conversation have been huge. She is owning this therapy thing now. She has customized and tailored it into something she wants, she is willing to work for, no candy or lip gloss required (but still appreciated).
I’m not talking about denial or acting like there are not hurdles to overcome. And I have the luxury of dealing with two girls who are not having to work with cognitive delays. I still push them and push hard. But I also learn. And they teach.
7 of 8 is teaching me again something I knew, I know, but I sometimes forget or allow myself to be talked out of.
At the end of the day, it really is up to her. I can support, enforce, provide accountability, provide structure, make it fun, use the best therapists I can find. But the efficacy of this whole thing will ultimately be grounded in what she sees as providing value to her.
I can guide that conversation.
But I also have to listen. And listen well.
Because I’m not here to ‘fix’ these kids. I’m here to celebrate them for exactly who they are.