To J.T.
Nearly 7 years ago our family stood before a judge, holding a beautiful nine month old baby boy who had been our foster son, humble and joyful as a judge declared we were now legally his parents in every way. Reams of records can attest: nobody involved with his case then could have foreseen the path we have thus far walked with our sweet Tony, who up until that point was meeting most of his developmental milestones. I have laid far more on the alter of parenthood than I ever could have imagined being called upon to do. If you have read the posts of this blog once every week, you still see a story that is quite incomplete. I could write posts of this size every day of the week and still not have said it all…only, I don’t have that kind of spare time.
I will not mince words here. If what happened with the handling of Tony’s semi-recent AAC application is representative of the experience that can be had by others receiving AZ DDD benefits, each of those families deserves better. Nobody is well-served by what we have experienced thus far. Our families are already living through challenges many individuals pray never become theirs without such an unnecessarily arduous process just to get basic medical needs met.
J.T., this matter was being handled by different departments. Technically, you didn’t have to become involved when I began copying you on my correspondence…but I am profoundly grateful that you did. Thank you for everything you did, both known and unknown, to bring about a resolution that allowed re-evaluation to proceed without a court hearing I view to be both highly unnecessary and an incredible waste of resources that could be better used to provide additional supports and/or services to other families.
When I told you our family stood prepared to do whatever was necessary in this matter regardless of the stress involved to me, I wasn’t bluffing. If an action is legal, it’s an option I am willing to promise to meet the medical needs of our beautiful, special little man. Thank you for choosing to become involved and advocating for a solution that spares all of us some of the heat that comes with that- and that allows me to focus a bit more of my attention directly on those who need and deserve it most. Thank you for seeing my son, and recognizing that his needs should be coming first in all of this.
Some Reading to Consider
No One Is Too Small To Make A Difference, by Greta Thunberg
The first time I read anything about Greta, it was from reports in the media a few months ago featuring the quotes of conservative pundits that I consider to be both bullying and in a way shaming, as they attempted to discredit the power and accuracy of her statements by weaponizing against her a diagnosis that clearly has not rendered her less capable. The young Miss Thunberg, you see, has been diagnosed with Asperger’s, which under the current DSM falls under the umbrella diagnosis of Autistic Spectrum Disdorder.
I then read the transcript of her September 2019 UN comments on climate change as they became available. I was intrigued and wanted to read a few more of her speeches. Because I don’t let Amazon talk too much with our credit cards anymore, I took a risk and ordered this short book from a seller on eBay. I found in these pages what I saw in her UN speech- the words of a gifted writer and fiery orator. Whatever you think of her views on the science of climate change (and for the record I happen to agree with her that the science is clear), I believe people attack her however they can because her words convey her understanding of the truth with great emotional power. And for all of those worried that she would be better served going back to school, Sir Ken Robinson (an international education consultant) would probably note that devoting her faculties to the demands of our current educational model would only kill her creativity anyway and that she is better serving herself and others by following her passion.
Clearly the editorial staff at TIME see something in the power of her words to lead and inspire also…and I have provided links to both their article naming her person of the year for 2019 and Greta’s UN speech below. I consider all three to be reading to consider.
TIME’s 2019 Person of the Year article
A Few More Options To Consider…
“Neurobiological foundations of neurologic music therapy: rhythmic entrainment and the motor system,” published in Frontiers in Psychology, written by Michael Thaut, Gerald McIntosh, and Volker Hoemberg.
This is a bit more of a technical read, but this is an article I recommend for anyone wanting to understand a little bit more about the science behind some of the NMT techniques that have been used with Tony. You can click on the title above for a link.
Neuro Rehab Update Post by laurabpilates, Instagram.
This comes with a shorter bit of reading and viewing. Emily shared this with me, and these videos demonstrate a clear example of how the brain’s reaction to an inability to effectively process and organize sensory input can impact a variety of functions, including speech. The first video shows her husband trying to sing along with her before performing neurorehab eye stabilization exercises. The second video was shot after the exercises were done, and the difference is remarkable. I also recommend scrolling to the top of the comments and text to read the explanation of what is being done and why. You can click on the title above for a link.
