Susan Senator

I am putting up an excerpt from The Autism Mom's Survival Guide today (Tuesday) rather than Friday. Fridays I tend to want to post about Nat. This piece is from Chapter Two, Surviving the Great Autism Therapy Chase. Remember, the focus of the book is not on the parenting of autistic children, but rather, finding happiness as a parent of an autistic child. Happiness, big and small, given the context of autism in the family. The solutions I have found range from large and philosophical, to focused and pragmatic. No solutions in today's excerpt, however; you'll have to wait for the book! :-) Pictured here is Nat (with me) last June, going to his prom.

...Families need help determining whether their children actually improved due to whatever therapies they’re using, or if they were simply misdiagnosed as “lower functioning” at the first office visit...

... If these children are all autistic, why do their outcomes vary so much? Why do some children seem to benefit from certain therapies while others do not? It is this confusion that gives autism a particularly soul-consuming quality for parents. Unlike most other medical diagnoses, there’s little precision or clarity—about what the disorder is, what the prognosis is, or about how best to treat it.

Raquel from Arizona was spitting mad when I first talked to her about her child’s autism. The ambiguity of the spectrum left her filled with a sense of frustration and impotence. She felt she was being led nowhere by doctors, autism books, and the autism community at large. “With most other special needs, you know more,” Raquel said, and as the mother of both a child with cerebral palsy and one with autism, she should know. “With my older son, who has CP, we looked into a couple of alternative therapies. But we understood that no matter what, he’s still going to have CP. We weren’t going to be able to cure him.” In the case of autism, however, many parents and professionals feel that one therapy or another can not only improve a child’s functioning but can actually cure them.

Raquel, like many autism parents, believes that autism is a unique childhood disorder in that so many children are diagnosed but so little is known about best practice, treatment, and prognosis. “What we’re calling autism is probably a bunch of different things,” Raquel says. Although not everyone I talked to would agree with Raquel on this assertion, most parents would agree that the spectrum is huge
and varied and that that in itself can be an obstacle to our peace of mind.

Here is my latest Tab column about how Papa Gino's is coming to my tony little town, and I, for one, am glad -- Papa Gino's gave Nat a job. And a promotion.

I hear the ones who get residential as adults are not -- she shook her head.
But you have to have a plan for when -- they don't say 'dead.'
You have to go and visit a lot of places
We should just start a house, all of us -- scared scarred faces
What is he going to do? He's almost 21
I see what he loves, what he thinks is fun
But it was never something you could wrap up in a box
More often it was the box
You entered this place, beautiful and whole
But we had to force you, perfectly square peg, into the world's dirty round hole
In the name of helping you
We had to change you
Educate you, medicate you
(I wish Bob Dylan would make a song
And tell us all where we went wrong)
Cause all I really want to do
Is just be a mom to you

Watching LOST became a bonding experience for the family. Max has been obsessed with it for a few years, and so has my sister, so finally I decided to give it a try. I may not have been hooked if it hadn't been for the enthusiasm of Max and Ben. But soon, I, too, was part of the whole Oceanic 815 experience, where I was trying to remember who was whom and what did that mean. The best thing about the whole LOST thing has been the way we have been talking about it at dinner, offering theories and even drawing a timeline to connect all the events and characters.

Today, LOST Season 6, The Final Season, premieres, and we will be glued to the TV, the only interruption allowed being Nat's phone call from The House.

I baked a LOST cake to surprise Max. Now I'll have to figure out a way to save a huge piece for Nat.for Friday.

This week's Haiku prompt is "uncanny"

Dark eyes see too much
Your mind gnaws, your heart breaks soft.
You repeat my self

"I highly recommend having children one day," I said to Max and Ben this morning as they chatted behind cereal boxes and open laptops. They did not look up at me but they did pause to listen. Nat was hovering in loose gray sweats and rumpled hair, waiting for me to make his bagel. He can do it all himself but I like to do it when he's home. Cinnamon and coffee smells laced the air.

I leaned on the cold granite counter and cut into the bagel. "No matter what kind of pain they may bring -- "

"The pain isn't going to affect us because we're men," interrupted Ben, grinning and hoisting a chunkily buttered piece of toast. The green sweet tendrils of "Nothing's gonna change my world..." were blooming from Max's computer.

"I don't mean that kind of pain," I explained patiently. Nothing's gonna change my mood... "I mean emotional pain. With children, there is so much of that, it's true. But the thing is, no matter how much pain there is, there is a level of joy like nothing else you could ever experience. Believe me. Just looking over at the two of you at the table like that, talking together, makes me want to cry." I paused, realizing my eyes were puffy and wet. "Hey, I am crying!"

Max laughed. There goes Mom again, I guess they were thinking. They went back to their conversation about the animation they were working on and I went into the kitchen to check the bagel.

Well, yeah. But it's true. You know what I mean.

Every Friday I hope to post an excerpt from my forthcoming book, The Autism Mom's Survival Guide: Creating a Balanced and Happy Life While Raising a Child With Autism. This will be the first of nine excerpts, which will end the week the book comes out (March 3oth). Enjoy!


A happy life consists not in the absence, but
in the mastery of hardships.
—Helen Keller, “The Simplest Way to Be Happy”

W h e n m y s o n Nat was diagnosed with autism at the age of
three, I had no idea how much autism was going to force me
to change: how I parented, how I made plans, who I hung out
with, how I felt about family, how I felt about my life. Those
changes were huge and fraught with emotion and intensity.
We didn’t know what to tackle first—finding him a school
program, educating ourselves, finding specialists for him and
for us—but we realized fairly quickly that we had to do all of
these at once.

“How can I bear it?” I wrote in my journal a few months
after diagnosis. “Nat is being called a ‘special ed’ kid, the very
thing I dreaded. If I let everyone else decide that is what he is,
I feel like I’m giving up on him. I see myself as his last hope.”

Back then I thought that if I accepted his diagnosis, it would
make Nat’s condition worse. I feared that it would change
how we all saw him and treated him, in a way that would be
harmful to him. This may have been magical thinking, but it
is what I felt at the time.

I eventually realized that I had to let go of the old idea
of him, of the prediagnosis innocence, and the visions I had
of him that never really matched who he was...

...How do we get to the blessed point where we finally step
back and understand deeply that our children are whole, not
broken? And that our own lives, by extension, are also whole
and full of potential? In talking to parents, I learned that
achieving this knowledge has nothing to do with our age, our
child’s age, or the severity of our child’s problems; nor does
it have to do with income, race, or any other factors we usually
think of.