For Miss Dee, Tony’s First OT
You and I both cried the last day our son worked with you. Over the months you worked with our family, you were a kind and encouraging presence as we began our journey of finding out what could be causing his symptoms and emerging developmental delays. To this day I remain grateful for your indefatigable patience with him as he screamed, tried to self-harm, and refused to interact with you for most of our sessions. And after several months, near the end of our time with you as one of his therapists, such a beautiful break through when you became the first person outside of our family that our son let touch him with any degree of calm.
When he was diagnosed with Sensory Modulation Disorder, you were the one who directed me to some initial resources to help me understand and better provide support to him at home. You never flinched away from his more dramatic symptoms, and I will never forget your kindness and refusal to judge when Tony was experiencing a sensory overload and vomited all over the carpet in your lobby. I am incredibly thankful that you worked with our private insurance to continue paying for his sessions after we exhausted his annual benefits over the months we were waiting to get his therapies approved and covered by DDD and AZEIP, funding sources your organization didn’t accept. And you went above and beyond by listening to me patiently as I detailed the medical dramas I was going through at the time. Years have being flipping past us, but I have certainly not forgotten you or everything you did, and I will always deeply appreciate every last bit of it.
Some Reading To Consider
No Time Like The Future: An Optimist Considers Mortality, by Michael J. Fox
I am going to be honest and admit that I was originally going to recommend a bit of a darker read this month, but as I look at the COVID infection and death numbers continuing to rise I find that I don’t have it in me to ask anyone to step out of any sort of light right now, even if the illusion of that light exists because the experiences of another remain unknown. So this week, I am going to recommend the writings of a self-professed optimist, whose health challenges over the last few years have caused him to embrace a degree of realism that led to a need to ultimately reconcile the two positions by experiencing an awareness of gratitude.
Having read this book, what is most striking to me is the difference between Michael J. Fox’s experience as a disabled person and what might be the experiences of someone without that degree of fame and income. Acting jobs were written with his challenges in mind. He had immediate access to the best doctors and therapists. He needs to use a wheelchair for a period of time and the building he inhabits installs a ramp without him having to fight for it being placed there. I really don’t wish to belabor the point because that is what I would want for everybody and I don’t begrudge him or anyone else that. But as I read it, I am still aware that this is not the universal experience for many individuals with disability and I see a vision of what our society could look like if we valued the person more than the function in each of us. And I see a hoped for vision that some day disability might not mean an unnecessarily diminished life experience.
A couple elements that I particularly appreciated in his writing were his description of what happened when his sense of proprioception was temporarily impaired after a spinal surgery. I think this is something that I wish everyone could read and understand as it relates to the difficulties individuals with sensory processing disorder or Autism, who often have proprioceptive dysfunction of some kind, and experience this as an ongoing state of being. And I really loved the quote he shared from his father-in-law that “with gratitude, optimism becomes sustainable,” and that Mr. Fox emphasizes that he can appreciate the good things he has because the bad things have put them in “sharp relief.” I love that he focuses on thinking about the past “for wisdom and experience, not for regret or shame.” Sometimes it is really hard in any circumstances in life to find that kind of equilibrium, and in reading this I found myself hoping to learn how to better internalize and balance those two elements in my own life…and I recommend this as a possible read to each of you for all of that and more.
One More Brief Note:
I know there are differing perspectives within our communities for how to live life within a pandemic. I personally am not going anywhere unnecessary and that is the philosophy I am living by, but for those who have a different comfort level for risk right now, I am going to note that Ballet Arizona this year is hosting a sensory-friendly version of the Nutcracker. These performances will have limited seating to respect mitigation measures for reducing the spread of COVID. I am going to be assuming masks will be mandatory, and indeed I note that the CDC today recommended universal mask wearing at this time for all citizens in its weekly updates about the pandemic.
For me, I have mixed feelings about putting up notice of these shows because of the pandemic. On the one hand, I am concerned about any unnecessary gathering right now leading to spread that could increase strain on our already heavily burdened health care facilities, but I also know how important these traditions can be for younger individuals in particular. Ultimately I decided I also thought it was worth celebrating that this organization has started producing shows for individuals with sensory differences and I hope this continues on a grander scale after the pandemic ends. That part definitely has me mentally skipping through a meadow of purple wildflowers! I wish each of you a safe and healthy week <3 Ari
Screenshots from a Ballet AZ e-mail and the CDC respectively.
