Nathan’s therapy is designed to push him, or pull him, to the right place on the milestones timeline. In other words, to be where we think he should be. (Not necessarily where Nathan is, or wants to be.) Right now he’s doing seven therapy sessions each week and we’re about to add two new ones. I want him to gain new skills, get stronger, walk, clap his hands, stack blocks, and so on. All the things that he should have been doing years ago now.
The weird thing about therapy is if I back off and stop doing as much as I think I should then I end up feeling like a not “good enough” mother. If I ramp up and start giving him every possible type of therapy as often as I possibly can, I end up feeling like Nathan is not “good enough” because he’s not catching up as fast as I would like. It’s a classic no-win situation. Good enough isn’t really what I’m after for any of us, though it quickly gets confusing for me.
What I’m really after is to help Nathan grow into the person God wants him to be. And to have fun while we’re doing it.
Fun things are happening right now.
Nathan is eating more than he has ever eaten by mouth. He is eating a tablespoon of food by mouth three times a day at mealtimes. Consistently he is able to manage thick pureed food things like: mashed potatoes, roasted veggies, guacamole, hummus, blended casserole dishes or pasta. He eats Cream of Wheat for breakfast mixed with a different jam each day. Lately he has started crunching on very small bites of Mum Mums or Pirates Booty, although he hasn’t figured out how to properly move it around his mouth. It usually ends with him grinding his teeth and us all cringing. Nathan is also trying small sips of honey thick liquids from a special cup. He gulps a lot and the risk of aspiration is still high, but he’s come far enough that we’ve decided to do another swallow study to determine just how safe he is eating.
He is in love with his feeding therapist which makes it all very fun for him.
Nathan is cruising along the counter tops in my kitchen trying to swipe things from us. He’s getting more daring and trying to transition from place to place or walk just holding onto one of our hands. He’s a speed demon in his walker. I keep joking with his PT that when he starts walking, he’s actually going to be running. His PT makes every session fun and he’s constantly using sign language to tell her he wants to go outside. He’s getting to ride an adaptive bike. And he’s a climber. A couple of weeks ago I found him on top of the coffee table trying to flip open a board book. All gross motor activity is fun for Nathan. I find it more and more challenging to keep up with him.
We’re a bit stalled in OT right now because his amazing therapist had another baby. He used to go to a therapy gym for OT. It was great in so many ways. She pushed him hard on the play equipment, was persistent to help him work with his hands on puzzles and games, and he had the benefit of playing next to other children in the gym which was a huge motivator. I’m optimistic his new OT will further develop his awareness of his hands and help with some of his aversion to loud noises with listening therapy.
In the coming months we hoping to add some different types of therapy and mix it up a bit. We are adding some behavioral therapy. Nathan needs help communicating the things he’s frustrated with and to break some bad habits related to mouthing everying. (If you know him, you know exactly what I’m talking about.) We are also going to start hippo therapy (horse back riding). It is slightly cooler this time of year and as far as fun therapy goes, this is about the best you can get.
Therapy is a constant struggle of how much is too much and how much is not enough. Nathan is motivated to move. He’s motivated to eat. We are trying to leverage those things to help him develop, and not push and pull him too much. Therapy is part of what we invest to help him to have the best shot at being his best possible self. The rest is up to God.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
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