Ariana's Posts

Finally PT

Posted on by Ariana
Tony & Justine working on upper body and core strength, all photos by Ariana

Miss E, Tony’s previous physical therapist, left the clinic where Tony was receiving PT around the same time as that organization was pushing forward with some business model changes that I felt would lead to clinic conditions that would be less productive for Tony personally. I of course support their rights to move in whatever direction they feel works best for them as a business, but as a mom I have to make decisions about what will be most helpful for our son. There was an in-home physical therapy provider who initially took up his case but then needed to quit for personal reasons a couple weeks later. I continued to work with Tony on the existing goals that had been established under Miss E so that he wouldn’t loose progress.

Although our DDD support services coordinator was trying to help us find a replacement for nearly a year, we remained unsuccessful until late August of 2020. I know that every therapist has a comfort zone for what they want to work with, and the first few sessions with Tony are often the hardest, so I was nervous as always but hoping this would be a good fit for Tony and for Justine. The first day she was working with him there were a couple of more sustained self-harming breaks, lots of fleeing, hiding in the closet, no desire to interact with her, and he broke the half bathroom door because he was so emotional he wasn’t processing my words of caution as he was trying to close the door while a temporary swing set up was hanging in that space.

The lifted up door panel to the half bathroom after Tony’s first session with Justine.

I told her at the front door as she was leaving that first day that if she could just hang on through the first two/three weeks, he’d get much easier to work with once he got used to her and I hoped desperately that she’d believe me. By week three things were much less dramatic (he flashes many smiles for her now, is much more cooperative, and he’s only had one very brief episode of self-harming in all the months that followed those first two weeks) and we are so very grateful that she was willing to give our little man and our family that chance.

Most of Justine’s work with Tony has been in-person in our home. Because we are in a pandemic though, there are times where we will do a telehealth session. If another provider who works with our family had an unmasked exposure with a person who ended up being COVID positive, we go into quarantine until testing results are available. Although we are working on Tony wearing a mask in-home while working with providers, he is unable to tolerate it for full sessions yet (some of these sessions are multiple hours in length depending on the therapy type). So even though everyone else is wearing a mask during the entirety of therapy sessions, Tony is not and transmitting infections to our family is still theoretically possible through him as closely as he works with each therapist.

  • practicing mask wearing during an in-home session with Justine
  • telehealth
  • telehealth
Only Tony’s part of the screen is shown here from a telehealth session with her to respect the privacy of Justine’s home. Working on upper body and core strength.

The two goals we are working on actively with Tony involve improving his upper body strength (the ultimate goal with this is for him to be able to support himself on his elbows for three minutes with only his chest elevated slightly off the ground) and walking down the stairs with an alternating gate. Both goals we have needed to do some skill chaining and some modifications to help him work towards the desired end goals. For upper body he needed a bolster initially, and we did work stepping on and in between buckets initially to help him establish the correct walking pattern for the stairs. While the buckets were previously purchased by me some time ago, I did need to buy a bolster for this, and both of those modifications worked fabulously with a bit of coaching for Tony and were recommended by Justine.

We are trying to transition him back into wearing clothes in session, but at most he is willing to leave them on for a couple of minutes at this time.

The rest of the post is going to be picture galleries with brief comments on what is happening, some of the things we observe in session, and what is being done to help him reach his goals. Once he has completed one of these goals, we will be moving on to another physical therapy target. The pictures are carefully framed or edited in a way that you can see what is happening but not much else because one of the things we have seen regression on during the pandemic is Tony’s willingness to keep anything but his underwear on in-home. Our son has a history of intense tactile defensiveness (which means his skin nerves feel sensory input much more strongly than someone with a typically functioning nervous system and even gentle touches can feel painful or unpleasant), and I think this is something he felt like he needed more control over in the face of so many pandemic related changes that were completely outside of his control. With everything that is going on, I am so glad though that for Tony there is finally once again PT.

Upper Body and Core Strength Work

The bolster was used initially to help him support the weight of his body until his muscles became strong enough to do that independently. Justine slowly began reducing the use of the bolster a few weeks ago, starting this by letting him use it for all but one of the repetitions and then gradually increasing the number of attempts without the bolster. Tony often asks for snacks on his AAC while we are working.

We use Tony’s kindle as a motivator while he is working on his upper body strength. He is much more willing to cooperate and try to hold the position as long as possible if he has something fun to watch. We will move on to a different goal once he can hold this position for three minutes.

Even medicated for his ADHD, Tony moves a lot. Right now his medication combination isn’t as effective for his ADHD symptoms, and finding the right balance for both his sleep and his ADHD is something his developmental pediatrician is working on. Often when Tony’s working on the upper body exercises with Justine his legs are kicking, kicking, kicking away…

Buckets and Balance Beam Work

I purchased a small balance beam off of Etsy when we pulled Tony out of the clinic mentioned at the beginning of the post. Justine will have him walk across the beam, then back again to walk across the buckets. Individuals with Sotos Syndrome have deficits in core muscle strength, so balancing skills can be harder to learn. He is able to walk across without falling or wanting to hold someone’s hand for extra support about half of the time right now.

Heading towards the buckets. I did purchase these a long time ago from Amazon. Most of you already know I don’t personally shop there by and large at this time, but as always, each of you can shop wherever you feel like. These are definitely well made and work well for in-home therapy.

Initially, Tony wasn’t willing to go down the stairs for Justine. So she would have him practice the alternating movement by stepping on the bucket with one foot and then off with the other, keeping moving in this manner through the entire bucket chain. Now she will do these exercises with him leading up to the stairs.

Stair Work

Justine will stand in front of Tony on the stairs on the way down, and when he is needing support completing the alternating movements, she will provide gentle hand prompts to the backs of his legs.

Sometimes now Tony is able to successfully go down the stairs using an alternating movement without support. His preferred method of going down is kind of a shuffling hop where he hop/slides down and lands with both feet on each stairs.

A Few Other Kinks We Work Through

Sometimes Tony will engage in task avoidance behavior like getting in his body sock and I will need to help extract him and prompt him to do as Justine asks. Sometimes he wants to just lay down and watch his kindle on his crash pad, and Justine or I will gently lift up on the screen to prompt him to respond to our verbal instruction to return to practicing the physical therapy task that was asked of him. We are very grateful for the patience Justine has showed in working with our son!

Ariana