The other afternoon I found myself, after a full day of attorney conference calls with my child's legal team, with a cell phone drained of all its juice. After getting Lila tucked away in the therapy clinic for her bi-weekly session, I hunkered down in the clinic hallway with their cordless and continued the settlement dialogue.
I must've had that "look": the haggard, war torn autism mother, buried in the trenches of FAPE litigation for an autistic youngster with enormous potential to improve and succeed if kept on a rigorous therapy system. My back was nestled in the crook of the wall with my feet crossed and my free hand unconsciously wringing at a lock of hair. I had just heard the threat that school district attorneys were preparing a case against me as a mother unfit to determine educational decisions for my child, when a figure appeared before me. I announced that my limit had finally been reached and that I had to stop talking on the phone. I had embodied Karen Silkwood, only instead of a nuclear conspiracy, they were in hot pursuit of a child who actually has an appropriate autism therapy program, something that almost doesn't exist at all in the State of California.
My child's attorneys remind me of this every time we speak, over and over. And it is largely because of my uncompromising ability to seek out and create the best educational scenarios for my child, and because of the bottomless compassion and talent of her special education attorneys, that she has, for the moment, an impossible program.
I had seen the woman before me in the hallway many times, in the waiting room, on the floor working with a young girl about the same age as my Lila.
"Wow", she said as I ended my call.
Yeah, wow, the understatement of the century I said to her wanly.
I asked her if she was a therapist or a mom, as those of us who become the Captains of our children's programs quickly do become nearly inseparable in appearance from our children's therapists. She was a mom.
She sat down on the floor in front of me as I told her their newest tactic to wrest my child's therapy away from her.
"Oh yeah, we just had a $55,000 settlement from a district that did nothing for our child for years" she told me.
$55,000 may sound like a lot of money to some, but in the autism world it's a small drop in an enormous bucket, about enough to keep a child in only Occupational Therapy for maybe a year. Then, there's behavior therapy at 40 hours a week, and speech therapy, not even to touch upon the medical bills for treatments that are legally excluded from insurance in the United States.
"We took it to settle. Going through trial was going to cost too much in legal fees to justify the fight". She further explained that they, as a family, were reaching the end of their rope in the fight. Both our children turned out to be eight. So we had both been in the trenches for five years. Both of us were torn up; we understood the fight in a way outsiders can't possibly understand. We hadn't slept since 2005. We hadn't had autism off our minds since 2005. Every step, every decision, every relationship, dictated by the spectre of autism.
"So now we're home schooling" she stated. "Best thing I've ever done. We hired a teacher." She followed this bright statement with the reality that money was running out.
"There's nowhere to put her," this lovely mother with an Eve Ensler haircut and a spicy component of unmistakable Chutzpah told me. "When the money runs out, we'll probably move to Israel and raise her on a kibbutz where it doesn't matter."
Not where autism or child-welfare don't matter, but where the money involved in handling them is secondary.
We autism mothers frequently dream like this. There's a magical place where there are no school districts or lawyers making millions of dollars to litigate for them, only beautiful wooded hills and sunshine with therapy clinics on every corner populated with brilliant, engaging, talented therapists who are in it for the kids, rather than the money, who aren't driven by school district contracts. In this magic land, our children partake of all the therapy they need with no battles to stop us. And our kids improve until one day, they can get on the train for Harvard or RISD and get on with their fantastic lives.
Yeah, like I said, we have active fantasy lives.
So, back in reality I tell her of the security guards from the school district sitting in our driveway at 11:00 at night with flashlights, of the constant breeches of medical privacy and the blockade of services guaranteed on my child's IEP, and never provided.
I think of who God made me, a woman with the ability to spend hundreds of hours researching autism treatment, Occupational Therapy and Speech Pathology outcomes in autism, medical case histories of babies with autism having improved or recovered in their symptoms, and the wonderful world of Dr. Stanley Greenspan who taught me how to make an emotional connection with my extremely special child. A woman who can hear the detestable scams used by the State, albeit hellishly compromised in its ability to fund education even for its neuro-typical population, to cheat a child out of therapy, and keep moving forward.
I have said that autism must become its own universe politically, educationally, therapeutically, and financially, before the tsunami of its epidemic can be appropriately addressed. Politicians, what are you going to do with the now growing three percent autism population, which now constitutes millions of babies and children entering our world in need of emergency help? Throw them away? Deny their existence?
As I and my fellow "Captain" sat looking at each other, I had the unmistakable feeling that she, too, was the particular type of mother who would stop at nothing to help her child live a happy and productive life, despite her daughter's autism diagnosis.
I wondered if, in 20 years from now when we were both looking at leaving our children behind without us to care and advocate for them, we would be seeing a world where autism had finally been accepted and understood as the catastrophic epidemic that it is, and handled accordingly. Or, if our world would still be pretending autism is some weird, unusual disorder that the boy across the way has, and it doesn't affect us all.
Every single family will have someone in it with autism.
Are we willing to keep this denial up in the face of this awesome reality?
When do we act, if not now?
The Pilgrims: the journey to a new world for autism, Narrated by Aidan Quinn
is a new feature documentary film made about the civil rights crisis in autism worldwide. Get more information at http://www.pilgrimsmovie.com
Contact the filmmakers at pilgrimpictures2008@yahoo.com. Production partners, renegades and hero families wanted.
Holly Robinson Peete: Shifting Focus: 8 Facts About Autism the Media Is Not Covering
Jenny McCarthy: Who's Afraid Of The Truth About Autism?
Alison Rose Levy: Autism And Allergies: What Can Your Child Eat?
Amanda Copeland: Autism: The Definition of A Social Wrong
I fought, as most parents, with little to no understanding of what to expect and/or where to go for help for my son. We fought and fought as I demanded more services. We withheld him from school and got a letter reporting us to social services for doing so. We ended up with an hour and a half of speech a month, shared with another child. We caved in because Ben needs the opportunity given there of the social interaction, something, actually, the only thing we cant provide for him on our own.
Parents not allowed to monitor class, no two way mirror, no webcam, no mention of a behavior plan in his IEP. I drop him off at school every morning and HATE it.
Where is that Autism-town? Surely someone will build one someday, why not do it now? Why not build this community as a model? Why not? Maybe it's because no one takes us serious.
We need a barn raising, an Amish like community of self reliance. Let's build it. Then let's all move in and show the world how to wrestle autism into submission. After all we cant give up, that's the one thing that's just not possible.
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I call on everyone, especially Marsha AKA mofmar333, AKA just2curious AKA time4truthnow to keep this set of comment, vaccine content free.
I certainly wish Ms.Copeland the best of luck with her endeavors.
They know how long the waiting list is for Medicaid and how private insurance won't cover our children. They know how many years many children have been on that list. They know to ask the families who have children with autism where the gaps are. They know the current system does not provide adequate supports and services to a population grown by epidemic proportions.
Many of our children are medically fragile and require specialized Plans of Care where there isn't a Tier high enough to accommodate them.
Amanda, no longer are you and I the voices who cry in a wilderness, "Prepare!" Our children are here and can no longer be ignored.
Alison Davis