I’ve mentioned previously this newsletter isn’t about a single father striving to balance work while raising a special needs child. In a couple of weeks, I will have been married for 11 years. Asa is the youngest of our three boys.
I thought it most fitting on Mother’s Day to pay tribute to Asa’s mother for her incredible advocacy on his behalf.
From the day Talya realized something wasn’t quite right with Asa, she has dedicated her substantial intellect, emotional strength and resilience to discovering what is different about him and how we might be able to help him. She chronicles some of these challenges on a public Facebook page, Adventures with Asa. But I would like to tell you a little bit of her story with less humility than she does.
Talya’s advocacy for Asa
If there is a Special Forces of parenting, the chief advocate for a disabled child automatically qualifies.
Typically, Talya’s background and advantages would guarantee successful results in getting Asa the help he needs. However, in the United States, achieving even mild results when facing a complex and frustrating health care system is an astonishing accomplishment. Let’s size up the combatants:
In Asa’s corner is a woman who:
Excelled academically at what is often ranked as the best private high school in Texas, and earned a National Merit Scholarship, which covered her full tuition at the University of Texas at Austin
Earned a BA in a liberal arts honors program at the UT, in addition to three other subject majors, graduating with high honors, and then completed Masters-level course work at Vanderbilt
Earned a JD from Georgetown University Law Center, a top 15 law school, and became a member of the Texas Bar
Clerked for a Texas Supreme Court Justice, completed a summer internship with a law firm, taught history at a private high school, tutored extensively and performed legal work for several firms
Yet, even with this background, she has met the challenge of her life, because in the other corner is an infamously worthy opponent: America’s unrelenting health care bureaucracy, rife with what seems — to those who attempt to use it — to be stunning incompetence, but more likely is purposeful, exploitative misconduct.
Recounting the litany of issues plaguing our health care system gets a bit tedious, but here are a few ways that Talya has observed the system to result in inaccurate or excessive charges and unreasonably delayed or complete deprivation of services for Asa:
Refusal to provide policy language or details that would enable us to know how to qualify for services
Administrative incompetence, ranging from numerous lost faxes to improperly applied billing codes to constantly providing inaccurate information
Denial of coverage for services that should clearly be covered under any sane interpretation of the insurance policy
Denial of coverage for illogical and sometimes plainly ridiculous reasons
A whole host of preposterous situations, including that fun time an urgent care provider, which lists our exact insurance plan on their website as “in-network” charged us as “out-of-network,” on the grounds that their doctors are not “in-network,” only the facility.
Many people run into these types of situations with our health system here or there, but special needs parents run into them on a neverending basis.
It is to our advantage that Talya has never been much interested in a career, allowing her to devote many more hours advocating for Asa than most parents.
When we met while she was attending law school, Talya informed me what she really wanted to do and eventually did it: stay at home with the kids and homeschool them starting in first grade, while also managing the household, including our finances.
She has vigorously provided our kids an education designed to make learning about the world and searching for the truth the most important pursuit of their lives.
Unfortunately, an inordinate amount of Talya’s time is now spent as a warrior fighting health care battles for Asa. She did not plan for it and she did not want it, but it too has mostly fallen on her very capable shoulders.
Asa’s heartbreaking diagnosis
I will discuss in a future post Talya’s superhuman efforts to do everything she possibly could to help Asa overcome his obstacles.
But first, I want to pause to recognize the day of Asa’s diagnosis is the day a mother lost her child. The Asa we thought we had was no more.
The hope of a high-functioning autistic child vanished. No amount of therapy would bring about the desired results. The doctor who said Asa would likely not be the president of his fraternity, but should be otherwise okay, was unbelievably wrong.
The terms of the test had changed. No one would be acing this exam. All of Talya’s hard work and all of her future hard work would likely only bring about the most modest improvements.
She cried and cried for weeks. I wept with her, but silently, somewhat stoically, mired in denial and shock. The photos and videos of a happy, healthy child in his first year of life now haunted us.
Our aspirations for Asa from the day he first drew breath would not come to pass. The world we had known our entire lives was no more.