The Commission on Autism

Maria and Marissa sounds like the name of a singing duet. And, yes, they represent a couple of voices. The first is precise and to the point, answering a query either with a crisp and absolute “Yes,” or a definite and unwavering “No.”

Lt. Gov. Tim Villagomez beamed with satisfaction as he recalled how he presided over the Legislature when the bill on the Commission on Autism was first introduced. He was delighted to sign the bill into law. “For you and the other children, the parents, caregivers and all concerned,” he said, addressing the gathered audience at the Governor’s Office conference room, “I sign this bill.” He added as he looked directly to Maria, “Is that OK with you?” Without batting an eye, sitting up straight and shoulders squarely perpendicular to the floor, responding directly and without hesitation, Maria uttered an unequivocal, “Yes!”

Tears flowed down Marissa’s cheeks as Maria reached out to touch and spread them on her Mom’s skin. As a second voice, Marissa’s is emotive in her free flowing articulation of what shakes and moves her. The unmistakable quiver on a voice exploding with an inner sense of urgency, and mirroring a profound sense of helplessness over a seemingly fathomless abyss over which the current understanding of her Maria’s condition echoes in many inner chambers of numerous parents’ hopes and dreams, even as her sentiments resonate insidiously in the hearts and minds of policy makers and implementers, and on that ‘moving finger having writ’ fated-ness came the creation of the Commission.

Marissa for sure keeps reminding herself to go beyond emotions into cold, logical and legal advocacy but her strength lies in a formidable voice that pleads, yearns, cajoles and demands. Marissa and her husband John, and their colleagues with the Autism Society of the CNMI have labored hard and pined long in their aspiration for what could only be a first step in a long and still arduous and torturous journey. Like many others this day, they would not let their seething anger, always present under the tiring demands of an awesome unfathomable mystery that has visited their children, to get in the way of an agenda.

“Eighteen months and 15 people to examine the current state, and plan the appropriate response, to the condition called autism, that’s what we have here,” the lieutenant governor summed up the law before the customary picture taking of those in attendance. Maria might be forgiven if she missed the cultural nuances, political overtones and economic undertones of the exchanges that followed, she was just content in pulling her back against her chair as the lieutenant governor said “Cheers” before the ubiquitous camera snapped its digital click. But the lieutenant governor expressed the consequent question of his audience to those who brought the bill for his signature: “When is the Commission scheduled to meet?”

I, too, have a Maria who turns 17 this year. Her brother, three years younger, has journeyed the same path of following almost a circuitous internal highway visibly headed nowhere save between the temples in their cranium. In the suburbs of Washington, D. C., in the mid-90s, their mother and I discussed the growing suspicion then that perhaps, the multiple vaccinations that the children received triggered a process resulting in the sudden termination of the production of synapses that connected brain cells to another, a common occurrence on children diagnosed with autism spectrum disorders, ASD. The impact of the unknown hit the marriage so much that the center would not hold and caused a rift that produced a tectonic chasm half the size of the globe.

Marissa latched on to the metaphor of bridging the gaps that the Commission might provide in the tenuous delivery of services within the public sector in response to autism, from early diagnosis and intervention to post-educational social net of deliberate and sufficient care. The metaphor of bridges is very appropriate. For autistic children, were their neural systems compared to a computer, there is nothing wrong with the CPU, the printer, the modem and the scanner by themselves. It is the bus connection between the parts that is deficient, if not sorely missing. The Commission will do well to heed the experiences of parents even as they continue to take the initiative to enlighten themselves on the possible influences that led to their child(ren)’s disability, and the practical measures they can deploy to allow adaptation to functional routines, or at least to stem any further neural deterioration.

MHS English literature teacher Courtney Zietske, erstwhile Puget Sound business administrator, is one of those parents. With his wife Venus and a book he wrote in 2005 on what he discovered about thimerosal, the toxic mercury-laden preservative administered to many children’s vaccines in the 90s, and the seeming attempts of those in positions of authority to suppress damaging information as well as protect pharmaceutical concerns from legal accountability, they hold a ticking bombshell in their hands. A legal combat looms.

With Vivian and Frank Cabrera’s carefully kept documentation on the journey of their son, and the countless narratives that can pour out at the drop of a pin from members of the previous autism-focused PACA, the autism-Down-syndrome-and-cerebral-palsy-concerned STaRPO, and now, the children’s-disability-inclusive Autism Society, the Commission should not be lacking of parents’ insights and testimonies to come before its panels.

In the ’90s when the UN declared the Decade of the Child, the late John Denver penned a plaintive song titled I Want to Live. I left Capital Hill after the signing with the tune hauntingly playing in my ear. Of my Maria Andrea and the Marias of the world, from the quiet murmurs of their hearts, these were the words I heard:

[I]We are children of the ocean; we are children of the land.
We are children raised beneath the golden sand.
We are children of the forest, we are children of the plain;
And we cry out to the universe, our voices not in vain.
We want to live, we want to grow,
We want to be, we want to show,
That we can share, all we can give,
We want to be, we want to live.
Gaze once more upon the faces of the young ones filled with care,
Can you see that even children’s dreams come true?
Will you join our parents’ vision: liberation, yes, we dare!
Navigating unknown story, our glory to lay bare.
For the worker and the farmer, the dreamer and the sage,
For the native, and the foreigner as one,
Taotao tasi, taotao tano, a parent and a child,
We are all one human family upon a human globe.
We are standing all together face-to-face and arm-in-arm,
We are standing on a threshold of a dream –
Share the learning, glean the wisdom, not a child to leave behind,
We are forging human destiny, our future to define.
[/I] After the stillness that lingered in my soul, the lieutenant governor’s question returned: So, when will the Commission commence meeting?

[B]Jaime Vergara[/B] [I]via e-mail[/I]