Wednesday, April 11, 2012

A few years ago, I met a parent of another child with autism. The well-intended, kind mother talked at length about grieving for the child she had lost, and how going through that process was helpful in allowing her to fully accept her son....for the child he didn't turn out to be.

It’s important to point out that I take no fault with this mother. She did nothing wrong in feeling some measure of grief or in giving voice to a sentiment that many parents share following the diagnosis of a developmental delay. For these parents, it’s vitally important to engage in that mourning process, so that they can move on, put their expectations behind them, and try to raise the child they actually have.

I've never mourned. I've never needed to. In fact, I often think parents generally do damage because a mother or a father is disappointed by the way a child is turning out. Over the years, I’'ve had business associates and friends whose parents wanted them to be doctors, who wanted them to have a certain status, or didn’t want their child to be gay. These parents saw their children as damaged, defective, incomplete... and all because the child wasn’t the person they had in mind. I promised I would never be that mother. And I am not.

Most recently, Henry has developed an obsession with the calendar. He wakes the first day of each month and proudly flips the page to it's proper date. (He'll change any calender, in fact, whether someone wishes him to or not.) “It’s February first!” “It’s the first day of April!” "Mom's birthday is in June!" We celebrate together.

But then, too, I don't want to diminish in any manner the realities of raising Henry. His therapies - speech, occupational, behavioral - cost time and money. Less than 5% of those services are covered by our insurance, but they are to the tools he needs to become successful as he ages. Fewer than 10% of children with autism will live as independant adults, and we are firmly committed to making certain Henry does not fall among the majority of autistics who spend their lives in insitutional environments. Teaching him to speak, to write, to brush his teeth has required a kind of painstaking dedication both on the part of us, his parents, and on Henry. The process of securing an education on his behalf has been a journey frought with allegations of abuse, lawyers and police officers and, ultimately, a legally mandated escort to ensure the safety and proper treatment of our son. The stress is enormous and, some days, I can feel myself breaking under its weight. Henry, too, feels the burden of a world that so often fails to understand him, treat him as an equal, pay him the respect to which he is entitled.

With that in mind, we've been seeking grant money through Boulder County Imagine! to help off-set a portion of the medical debt we have assumed as a consequence of accessing the best available tools for our son, as well as providing my husband and I the possibility of periodic respite care. (Yes, I would do just about anything to have an evening alone with my better half.) The caveat? We had been told that Henry would have to submit to IQ testing, and that it would have to be administered by an employee of the school district.

Henry was provided IQ testing at the time of his initial diagnosis. It was done by experts in developmental psychiatry at the JFK center in Children's Hospital. He scored well above average, as we had expected. These scores, however, are not admissible because of his age at the time of testing and because the test was not administered by "approved professionals." (Apparently, the best team of experts in the state are not "approved" by Boulder County. Figure that one.)

Those who know me can predict what is to follow. There is no way I am allowing the school district, with under-qualified professionals not trained in error-controlling IQ tests for children with autism, to administer this examination. If he were wrongly diagnosed with mental retardation, it would eliminate the presumption of competence, and I would be in position of yet again fighting to keep Henry in a classroom with his neurotypical peers. After exhaustive research of legal statutes and phone calls to every other county in the state, I won.

I'll spare you the details. It's been a year and eight months of fighting. But today, at 10:00, we won the right to select our own expert, apart from the school district. We chose Dr. Emily Richardson at the CU neuropsychiatric department. A graduate of the Yale School of Medicine, Dr. Richardson specializes "in the evaluation of cognitive changes related to brain disorders in adults, cognitive declines in older persons due to Alzheimer’s disease and other dementias, and learning disabilities across the lifespan."  (
We have been assured that Henry will get the test best suited to his level of need as opposed to the psychoeducational assessments generally performed in the schools. If he is non-compliant, she will render that in the medical record as opposed to a default diagnosis of incompetence - also used in the public school setting. So long as Henry scores above an 85, which we are sure he will, we will receive a $10,000 grant check every year for the next five years and, thereafter, $1200/yr to provide for medical services. Getting all of this in place has been a long, tedious process. I know more about disability law and case history than I ever wished to know. I have spent more time reading legal journals and scholarly articles on IQ tests and assessments than I ever expected. But, at the end of the day, I am comfortable that we have protected the interests of our son while meeting the needs of our family. And, in that process, I have become better. My son has made me stronger than I ever imagined.

When I called Dr. Richardson this morning to set up the appointment,  she paused and inquired, "What, exactly, do you do? For a living? How do you know all of this about the tests, the law, the process of error controlling and processing efficiency and ascertainment biases?" I laughed. This is what I do. Raising him is my most important job, and I am only going to get one crack at it. So far, so good.

We see her Wednesday. Fingers crossed.


  1. "This is what I do. Raising him is my most important job, and I am only going to get one crack at it. So far, so good."
    Exactly right Becky.
    Congratulations to you and Henry.

    1. Thanks! And yes, you know this all too well.