Change is like an erratic pulse…sometimes the beats are slow and the space between can stretch out, only to sprint wildly towards a rapidly winded staccato. This has been a month where we’re experiencing more changes and emotionally I’ve been a bit more breathless, as two of Tony’s providers (Madi and Rosette) have accepted positions in other places.
The side of me that loves and supports both of these lovely ladies understands and is cheering them on wholeheartedly. I must however, confess to having a more miserly side that adores them also, but has been selfishly curled up and howling out emotional monsoons for weeks.
Madi, who is moving out of town, gave us three weeks notice to help prepare Tony before her last day as one of his Neurological Music Therapists. I am deeply grateful for this, and I thought it would be appropriate to both honor and recognize Madi’s contributions, update everyone on what we are currently doing in our NMT sessions since we haven’t talked about it in a while, and introduce the kind Miss Leah, who will be taking over Madi’s caseload and therefore co-treating in one of Tony’s sessions each week.
Leah, welcome to Tony’s therapy team 🙂 We are profoundly grateful for the extra time you have been taking to get to know our son these past couple of weeks.
And to Madi…thank you. Our family is wishing you every happiness and success in your new town. And, because part of my emotional Scrooge is still wanting to dole out the tears, I’m going to leave it there and spend the rest of this post describing what we are doing with commentaries on the pictures I took for the updates portion. I will visit Rosette’s last few weeks and OT updates at a different time.
Tony’s NMT therapy team is working on helping him initiate and sustain movements. In the first picture, Tony is working on initiating drumming while walking using the same movement bilaterally. The metronome is used and set to his optimal beat for regulation during these sessions. For the second shot, Emily and Madi are working on developing initiating movement while crossing the mid-line of his body (something that is very difficult for Tony to do). At this time, our little man needs hand over hand support to help him complete this arc of movement. Tony has also been working on initiating drumming with Miss Leah, but because she is new to him and he’s still building a bond with her, he spends a lot of his time trying to run off. Emily is providing support with her arm to remind him to stay with the group.
Usually after Tony has been working on initiating and sustaining movements for a while, he needs some squeezes and stretches (for calming down his nervous system) to help him emotionally regulate and be ready to continue working hard in his sessions. Tony is letting Leah touch and interact with him already, which is great! I remember a time when it would have taken months for him to get to this level of willingness with a new person, and picture #3 is from his second session with Leah, which is just awesome by comparison. But as you can see from picture 4 (which was from yesterday), our little man still has moments where he is not feeling ready to engage with her yet. Here he has refused to ask for squeezes and is signalling with his body positioning that he’s not willing to interact with her at this moment in time.
Tony’s fantastic NMT team are also helping him work on his balance and initiating movements in different positions. Like many individuals with Sotos, Tony struggles with core strength and stability, which makes balancing activities harder for him. Sometimes he will grab whatever he can when he’s feeling wobbly, but Madi was a trooper as always!
Sometimes Tony needs other types of sensory supports to help him stay calm in sessions. He likes to use and walk around in a body sock (shown in picture 1 while walking with Madi). For Tony, he struggles to feel his body’s position in space, and the body sock applies a light field of pressure that helps him orient himself. Weighted medicine balls can also be used to help him regulate his emotions. He likes to carry them around, but he will also hold them on his chest sometimes and if you notice his ultra relaxed look in picture three, he really enjoys it when Emily rolls them lightly along his arms. We have a body sock and weighted balls at home for our little man for these reasons.
Our sweet son is rather sensitive to light. He can turn off the lights in this windowless room, with the door closed, and see well enough to find things and use them…all the light in picture 1 is from the brief moment of my camera’s flash. A game they play with him to help motivate him to try producing certain vocal sounds is to have him run to the back of the room, try and say the word “off,” and then when the lights go off he tries to get to the light switch before Miss Emily turns it on. Sometimes when she gets the light on, he’s not all the way to the switch yet (as in picture 2) because he gets distracted spinning or bouncing on balls.
Sometimes he tries to go around Emily (picture 3) and shut the lights off without having to say anything, but she catches him and prompts him for a verbal attempt- in this case, she’s asked him to try “more.” And once today, he got to the switch before she did and actually turned it on…it’s hard to see where he is for the rest of us in the dark and he’s that quick even without lights. My flash went off at the same time he flipped the switch. Tony struggles to put two sounds together, and at this time cannot reproduce some consonants. This session pictured was the first time I’ve ever heard him make the “f” sound under instructional control.
Most sessions our Tony will ask on his device to use a yoga ball. He likes to bounce on them (picture 1), and roll on them in different positions. He needs so much bouncing to increase his attention for the same reason he needs the rocking…it helps his vestibular imbalances. For me, I find myself once again getting emotional as I look at pictures 2 & 3. There was a time in the not so distant past our son didn’t have the core strength to do either of these maneuvers by himself on this size of yoga ball (it’s bigger than the one I bought for myself to use at home).
I recognize so much in the reactions of others how they view my son from the lens of what a typical child his age could do…but I must rejoice. My son is still moving forward, even if the definition of progress looks different to others. Bit by bit, we’re seeing him gain new skills that will help him on his journey, and for three years now Tony’s fabulous NMT team has been part of helping him on that journey. We have been blessed by the kindness and compassion of every therapist he’s ever worked with here, and look forward to seeing all of the ways Miss Leah’s involvement will contribute to Tony’s growth. Sometimes the speed changes, but their team has never missed a beat. 🙂
