Wednesday, April 18, 2012

Generally, most days are good. I am contended in the wonder of our life - my husband and I and our two beautiful children.

Most days, I look upon my son and daughter and I feel that I am actively participating in a miracle, as I get to take them by the hands through these early years of living. 
Rarely, I felt like much of what I am doing as a mother is necessary, but painful. Those days are few...but today is one among them. No matter what challenges we face, I know there is always a "best I can do." Getting mad at myself for being incapable of giving more, moving harder against the current,  won’t lift my spirits or motivate me to take positive action. It will, however, make my journey more miserable. So I push on...but some days, some days...

Some days are just hard.

It is ironic that I write this today, perhaps, as the Supreme Court decides the fate of President Obama’s Affordable Care Act.  Amid all of the fierce rhetoric and debate is the inescapable truth that the financial security and potential health outcomes for millions of ordinary Americans also hang in the balance. And there, swinging with pendulum, my tiny family of four...

Henry was to undergo a battery of evaluations today, with the hopeful outcome that he would be awarded grant money sufficient to secure ongoing behavioral, speech and occupational therapies. (Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone requiring multiple therapies - like Henry - and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.) The right to have the tests administered at the University of CO by autism and neuropsychiatric experts was a had-fought battle, and it would be dishonest if I didn't admit that I have grown tired of fighting at every possible turn for things that seem so very simple...reasonable. Despite winning the right to have Henry assessed by the best experts in the state, we knew that children with autism are notoriously difficult to evaluate. We were advised that fewer than 4% of children under age ten are able to complete the tests and be provided an IQ score, and most of those children (88%) will be diagnosed with Mental Retardation. The county, however, requires an Intellectual Quotient score over 85 to provide financial support to families of autistic children. With those odds in mind, we pinned our financial hopes on our six year old son because our private insurance and the US government, the state and the county, have failed us.

We took Henry out to breakfast this morning, and explained that he would be seeing a group of doctors who wished to play some reading and math games. We asked him for his cooperation. Henry, to his credit, has been subject to more evaluations in his short life than I can begin to count...and some years ago, I promised him that we would be prudent in our choosing those measures down the line. We would not brow-beat him into normalcy, or make therapy and performance measures a full-time job. I promised that he could just live as a child should live...without the burden of being anyone other than himself, with his own potential and possibility. I have kept that promise absolutely, until this morning with one last test. Henry would have none of it.

He was cross. "I don't want to go. I don't want to do it. Please. I don't want it."

Me, either, I thought. But instead, I offered only this: "It will be fun. You'll play some games and follow some directions and then, when it's all done, we'll go look at trains. Just try your best to cooperate, and you will have a fine time."

Henry was having none of it. Fifteen minutes after the testing began, the director of the CU neuropsychiatric unit emerged, and told us that he could not be tested.

"I know he is bright. He was quick to put together the puzzles...he read my notes back to me when I set them on the table. His IQ is certainly over 85. But I cannot test him, and I cannot assign him a score. I am sorry."

I took a deep breath because I did not want to cry. I didn't want to burden my six year old son with the thought that he had failed. I didn't want him to understand the gravity of that moment.

Seven years ago, my husband and I decided to have a baby. And we have loved our son absolutely and unconditionally from the moment we first knew of him. We had all the resources new parents require, including a nice measure of financial stability. We never imagined a day when we would wonder how we could possibly meet the needs of our children...and yet, here we are. The financial toll of autism has been extreme, and our private insurance pays next to nothing. The publicly available services are supplemental at best, and sorely lacking. We have transformed our lives and spent our savings in the hopes that Henry will reach his fullest potential as he grows. The money is running out.

I refuse to look at my son, and tell him that we cannot afford to teach him to speak. I won't explain to him that we cannot give him the therapies that might enable him to write his name, because they cost too much money. I won't tell him that he will have to scream in terror when he enters a crowded room because ABA therapy is not a "covered therapy for autism" under our Anthem Blue Cross plan. We will just have to find a way...but it is getting increasingly difficult to do that. This was, for us, the last option amid a dwindling set of alternatives.

I nodded, and left with my husband and son. I had, after all, made a promise to shop for a new wooden train. And then, I got angry.

Imagine! of Boulder County simply suggested that we wait to have Henry tested. Older kids do better. The increase in the incidence of scoring is dramatic. Once he is ten, you should be able to get an IQ test done quite easily.

Once he is ten, it won't much matter. The initiation of early interventional programs are believed to be beneficial since the brains of infants and toddlers have a higher degree of plasticity, or the ability to create new neural networks, compared to older children. By using the ability of a young child's brain to reorganize neural pathways, before their brain has developed past the point of plasticity, EI programs and intensive early treatments improve outcomes in children with autism. After about age seven or eight, for instance, the language pathways in the brain are largely fixed. The window is closing, and we need the right tools and resources now, when we can most readily influence outcomes.

Less than 10% of children with autism receive adequate therapies. 90% of children with autism will require life-long care.

It's an absurd system, and one in which we are stuck. Right now insurance companies and the majority of self-funded plans discriminate against families with autism, denying reimbursement for the basic, evidence-based services that can often dramatically improve the quality of life for their children with autism. (We are not talking crazy biomedical treatments. We are talking an hour of speech therapy.) Right now, few local school systems deliver individualized and quality-driven plans to meet autism's ever-growing demand for appropriate special education services. Right now, parents of children with autism confront tremendous difficulties in accessing even the most basic state or local services to help support them in providing needed resources for children with the disorder.

Henry deserves to get a quality education, to find a satisfying job where he can productively use his talents and abilities, to live fully integrated in the world around him. And I am going to make that happen...

My day was supposed to be spent at the office, finishing patient charts. Instead, it will be spent on the phone. First, with Imagine! of Boulder County, as I seek an explanation into this absurd system whereby those in charge of dispersing funds ensure they will never need to actually provide grant money to families as required under their state mandate. I'll go on from there. Because I don't have time to waste crying...I have to help my son, personal pain aside. That is the best I can do.

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