A few months ago, the clinic Tony goes to for physical therapy completed construction on an outside gym. This additional equipment has charmed his giggles and bubbled up bursts of joy each week he works outside with Ms. E, his physical therapist of nearly two years. When the weather won’t allow for work outdoors, his disappointment draws the storms inside and we are more likely to need to use interventions from his behavioral plan.
This past quarter, Tony was able to check off an important milestone in his work here: the ability to follow a structured physical therapy (PT) session with 75% accuracy. He is also close to meeting his balance beam goal, although he still is hesitant about letting go of Ms. E’s hand. I have noticed he will move across without holding anybody’s hand more readily when walking along a curb, which is lower to the ground. I suspect the additional height of the balance beam, or perhaps the slight wobble and vibrations caused by the force of his steps, may be causing him some extra hesitancy there.
As always, I honor Ms. E for her tireless patience and professionalism when working with our son. What follows is a pictorial summary of some of the things she and he are currently working on (all photos by Ariana).
In session, he will let go of Ms. E’s hand for brief periods of time as he is crossing. With the balance beam, we are working on balance and core stability. Of course, sometimes he isn’t feeling it and can take a bit of coaxing to try.
Often, sessions will start outside on one of the gym’s swing attachments. Tony and Ms. E work on utilizing his core with different types of sitting and kneeling during swinging, and on providing vestibular input for emotional regulation.
Ms. E is also working with Tony on strengthening his core and integrating full body movements for using traditional swing seats. This is a particular challenge for Tony, who (like all individuals with Sotos) has core muscle deficits and continues to struggle with getting his muscles to do what his brain wants. Sometimes he also gets so enthusiastic that he forgets to keep holding onto the chains with his hands.
The outside elliptical walker is being used with Tony to encourage dynamic balance, core stability, and bilateral movements.
This apparatus targets upper body muscles, using the weight of the individual. Tony needed a bit of an assist in the beginning, because he’s over 80 pounds of cuteness. During some of his more recent sessions, Ms. E has been able to model the motion and he was able to push the bars up on his own, which lifts his seat up a bit.
Tony is also working on building his lower body strength on a leg press, again using his own weight. Sometimes our sweet son needs help with his foot placement, and with keeping his feet from slipping off.
Most PT sessions wrap up with a few minutes of work inside, where in addition to targeting the balance beam, other forms of swinging are used for core muscle challenges and regulation. He will also rock some for calming vestibular input, and is practicing movements that require coordination from both sides of his body on a seated scooter.
They are also working on upper body strength and giving calming sensory input by having Tony push against Ms. E’s hands.
I try to regularly ask Ms. E, as I do with all of the therapists we are blessed to work with, what skills she would like us to provide additional support or practice with Tony on during the rest of the week. Right now, at her request, we are trying to give our little man more frequent opportunities to practice kicking with a single leg stance. We are also continuing to try and find ways to help him throw a ball to another person.
When Tony first started occupational therapy, his fabulous OT at the time, Miss Dee, instructed us to use weighted balls with him at home to provide additional proprioceptive input to his sensory systems, which would assist with integration, calming, and emotional regulation. We needed him to understand that these balls were never to be thrown at another person, so he was taught to aim them away from other people, and he has done amazing at following those instructions. Typically, our little man truly doesn’t seek to injure anybody. Unfortunately, he also decided that meant that no ball of any type should ever be thrown to someone.
We tried a hot potato toy- he still felt that was too much like a ball. We’ve had some exciting success since our last PT session with an idea of Emily’s, which involved a progression from having him throw a bean bag into a bin on her lap to throwing a bean bag directly into her lap, and he was able to generalize this to both J.N. and I. Hopefully over time, this will translate into interactive ball play and help check another PT goal off our little man’s to-do list.
In the meantime, we’ll just keep plugging away and working it out with Ms. E, who is fantastic about helping our little man move forward while rolling with all of the emotional weather and sensory storms.
