To Miss J, Who has been Tony’s fabulous DDD Support Services Coordinator since the summer of 2018.
Our very first meeting, you listened to what I told you our son needed and did your best to make it happen. I know the approval of specific services is not in your hands, but I am extremely grateful that you have efficiently done everything you could to help our son access necessary services and equipment every time they were needed over the past two years. I appreciate that you have kept me informed every time you received word about newly available therapists on our side of town that could possibly be able to work in home with our little man, and I thank you for backing me up when I stated that something wasn’t what was best for him. You have my gratitude for arranging contact-less delivery by someone else of Tony’s new AAC device as it became available while you were going to be taking time off (so that receipt for him was not even further delayed). For everything that you have done to assist our little boy, you have my most heartfelt thanks.
A Brief Note for/about J.N. and Stephanie
I would like to publicly acknowledge with my deepest appreciation both J.N. and Stephanie, who have both accepted new roles elsewhere that will prevent them from continuing to participate as part of Tony’s therapy team. While I am sure those who have accepted the titular positions and filled those vacancies for our family will also do everything professionally possible to help our little man continue to grow, I would like to express to both of you how very grateful I am for everything you did. To J.N. (who was helping our little man generalize safety skills in the community) and Stephanie (who always had something positive to say to Tony about his efforts) your contributions will be missed and I thank you both.
(J.N. with Tony on October 25, 2019. Stephanie pictured with Tony on August 22, 2018.)
A Brief Content Note
My friends, family, subscribers, and loved ones: Miss Emily recently needed to restructure her time working with our family, which has led to a reduction of hours. When it comes to habilitation therapy in AZ, you use those hours or you loose them. Because we are still in the middle of a pandemic that so many super smart sciency people don’t anticipate ending any time soon, it is very difficult to find hab providers under these circumstances, I am acting as a temporary direct care provider to fill the remaining unused hours so that they still remain available to him while we are searching. Always it has been thus that I fill in whatever is missing. For this whole past year, I was doing Tony’s physical therapy myself. I did 30 hours a week of Tony’s hab and ABA therapies for the first two years he was approved for those services because we couldn’t find anyone who was interested in filling those hours…and so it will go for anything our little man needs the rest of my life as I am able to meet those needs.
What that means in practical terms is that between this and the time consumed by needful pandemic-related infection control measures, my personal time in general is currently on life support- and my writing time is incredibly limited. Please expect that the upcoming posts will be shorter on words, pictures, anything even remotely approaching artistic wording, and otherwise rather specific to the point.
Some Viewing To Consider
An essay from one of my reading recommendations last month referenced the viewing of a show with disabled performers. Those of you who know me personally understand that I love watching dance in general, so I decided this month to highlight some videos I have enjoyed from inclusive dance companies or disabled performers. For me, as a viewer, I most enjoy performances that resonate accurately on an emotional level, and each of the segments below were powerfully evocative. I have included YouTube links for clips of these performances, which can be accessed by clicking on the individual titles.
Axis Dance Company. “Full of Words,” and “in-ter-twine.”
What I love about this dance company and the one below is that disabled performers and non-disabled performers seamlessly flow together to portray the stories. I appreciate the brief sensuality shown in “Full of Words,” (everyone is fully clothed for those who might be worried and wanting a heads up). As a society, we need to recognize the needs and desires for intimacy and connection that every one of us has.
Candoco Dance Company, “Unspoken Spoken.”
I would encourage reading the description box on this piece for a bit of the contextual messaging, should it be needed.
Lisa Bufano, “Five Open Mouths (from Heidi Latsky Dance)” and “Five Open Mouths (from WBUR video archive)”
Longer clips of this performance can be found online, however I have chosen smaller clips from the choreographer and a media outlet, as I am passing on only links from sources I feel more sure are authorized to be posting them. The dancer herself passed away several years ago and does not have, therefore, a channel of her own. She was graceful and innovative in the way she expressed her art, with some of her performances (not shown in these clips) utilizing stilts or prostheses.
