Chris

Chris, you have been a pillar of patience on our therapy team for more than a year now. I can imagine the types of things you could have been thinking when your boss told you that I was asking to meet with you and observe how you interacted with our son before I would commit to transferring him to your schedule. Thank you for not being scared off by that alone.

I am sure by now, of course, you understand why I felt it was necessary to make such a request. We are the proud parents of a very special little boy with many conditions and a complicated array of strengths and deficits. Speech is his least favorite therapy type, thus enormous amounts of patience and empathy are needed for anybody working to help increase his communication skills… and you definitely have those. I am so grateful for your calm and compassionate understanding as you work with our little man. I am beyond thankful for your willingness to be flexible in your daily approach to adapt to whatever is happening in Tony’s world that might make him more combustible to work with on any given day. I really appreciate that you listen to my feedback when I think we need to try or work on something different. Your flexibility with both of us means a great deal.

And, I cannot thank you enough for your involvement and continued support of Tony’s needs as we have sought to navigate the process of applying for and obtaining for our son a fully functioning medically necessary augmented communication device. Ten months in and we’re now entering a phase where we may need more the help of others to finish this quest. But for everything you have done, and everything you will do as Tony’s speech therapy provider, thank you. We appreciate you, we value your feedback, and we are grateful for all you do to help our little man move forward.

A Brief Content Note

For those who are directly subscribed through my blog itself to receive the posts via e-mail, please note that I am planning for next week’s post to contain multiple brief videos of Tony using his speech device, as those will best demonstrate my intended topic. I usually don’t embed videos in the post, but the last time I used one I noticed that it didn’t carry over into the e-mail that was sent out. So, if you want to view any of the videos that will be in the post, you may need to go directly to the blog on-line. There may be a way of course to fix that, but I am not especially tech-savvy, and I am also a not-for-profit blogger who spends a great deal of time helping out with Tony’s therapy programs and raising both my kiddos. I can only apologize and say that unfortunately really can’t be my top priority, so I thank you for your patience and understanding.

A Brief Note to Other Parents Currently Applying for AAC Devices in AZ

You are your child’s first advocate, but navigating the process can be stressful, especially with everything else you are already doing. If you have read the denial letter we were sent that I posted this past Saturday, I think that speaks for itself when compared to the documentation that was sent in the evaluations themselves and what is already on file with the Division. Sometimes answers you may get from your loved one’s insurance may not accurately reflect the reality of what you sent in or they have on-file. Learn what’s in your loved ones reports and where it can be found, and what types of information should be in a given type of record. Learn what the legal protections are for your loved ones, and reach out to Raising Special Kids or another advocacy group if you have questions about what your next steps need to be if you believe your loved one should not have been denied coverage or benefits.

Also, you can refer to guides on the ACDL website to help you. I have provided a link here.

Some Reading to Consider

Imbeciles, The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck, by Adam Cohen

When I was growing up, I can’t remember attending a single public school history class in which we discussed how Hitler’s regime based their own eugenics programs on American eugenics laws and practices. And yet, the Nazi documentation on this is clear- their own ideas and programs originated in American law and practice. Adam Cohen has written a compelling book chronically the extent of what American eugenicists were willing to do to secure their agenda, focusing specifically around a the case of Carrie Buck. Ms. Buck was a foster child, taken in and removed from school early so that she could act as the servant to a local family. Raped and impregnated by the foster family’s nephew, fraudulently labeled as having intellectual disability during the family’s efforts to have her permanently removed from the community in an effort to protect the rapist, she became the test subject of a case to legalize eugenic sterilization of those deemed to be a drain on society.

Ms. Buck would find justice nowhere. Told only she was going to be having an appendectomy, with an attorney supposedly representing her that was hired and maintained close relationships with the very organization trying to sterilize her, her case was intentionally loaded with fabrications and designed to rise to the level of the Supreme Court in securing legal precedent for state-ordered sterilization. The Supreme Court’s verdict, written by a judge considered a legal luminary with a clear history of believing that “might equals right,” allowed for legal government ordered sterilizations and is still law. Thousands of individuals have been sterilized using this precedent, some every bit as devoid of actual medical conditions as Ms. Buck.

In reading this book, there were many aspects that I found horrific to the sensibilities. The number of religious organizations supporting eugenics at that time defies my ability to comprehend. If a group takes a moral and spiritual stand that every life deserves to be born, then I feel this should go hand-in-hand with the idea that every life should be compassionately supported and aided in finding the best quality of life possible. Anything less, to me, seems to mock the very Creator being appealed to in establishing a right to be born. Ms. Buck’s case clearly demonstrates one of the biggest concerns for this type of law: the risk for abuse of power. Eugenics supporters of her era believed that being in poverty alone was evidence of inferiority and mental deficiency. Racial, ethnic, religious, and gender discrimination also played into the ways eugenics supporters wanted to see these types of law applied. And, sometimes those themes can still be seen today. To quote the author, in 2011, “the first vice chairman of the Arizona Republican Party, a former state senator, was forced to resign after he publicly called for the sterilization of women on public assistance.”

There are delicate moral and ethical issues involved in these matters, but I think Mr. Cohen aptly addresses this in the closing words of his book. “In an era when so much of America was caught up in social Darwinism, and channeling ideas about survival of the fittest into a cruel biological ideology, few paused to contemplate what Charles Darwin himself had said on the subject. In The Descent of Man, he conceded there might well be practical advantages to abandoning ‘the weak and helpless,’ But doing so, he insisted, also brought with it ‘an overwhelming present evil.’ We must allow the weak to ‘survive…’ Darwin insisted. Doing anything less, he said, would mean abandoning not only the weak and helpless but the ‘noblest part of our nature.’”