I Am in Here (12 page)

Relentless Parenting

On a working retreat with Mom

  
Hard Things
  

When I am alone

I often wonder about my life

And the things I plan to do.

I know that there will be strife

And sacrifice

But all things worthwhile

Come with a price

If you want to accomplish your dreams.

(age 10)

I have plans to feed the hungry, fight for world peace, and travel. These are hard goals for anyone. I know I will have to work extra hard to accomplish these dreams
.

O
n rare occasions, a movie captures a truth and brings you to your knees. That was what it felt like for me when I watched the HBO film
Temple Grandin
.

Temple is well known for her accomplishments, despite being deeply affected by autism. She has a doctorate in animal science and is credited with designing more than half of the commercial animal handling facilities in North America. Her life's work has had a major impact on treating animals more humanely.

In one of the movie's more powerful scenes, Temple's mother, Eustacia Cutler, opens her heart to the science teacher who will later become Temple's mentor:

This short movie clip says so much about what it means to be a relentless parent—and I choose the word
relentless
pointedly. All good parents are persistent. Persistent parents are firm and committed and in control. For autism parents, we can't settle for mere persistence. Relentless parenting can make us feel out of control, but perhaps that's the point. Relentless parenting is not about being in control; it's about being driven by a love beyond our control. It compels us to act in ways that wouldn't survive a coolheaded cost-benefit analysis.

There is a saying, “We don't choose our children and they don't choose us.” That is true for most of us but not true for a woman named Norma Claypool, who caught my eye on the cover of
Parade
magazine on December 25, 1988. Over twenty-one years, Norma had adopted ten children as a single mom. Norma's adopted babies were special children. They all had severe disabilities and, but for Norma, would have been institutionalized. The article spoke about Richard, age ten, who was blind and had undergone nineteen facial operations, and Gayle, age two, who was born with only part of her brain. The cover proclaimed Norma's words: “Most people adopt children with their eyes. I adopt them with my heart.”

Norma adopts them with her heart because she is
blind
. It took my breath away.

When Norma was two years old, her eyes were removed to treat a malignant brain tumor. “My mother, a 4-foot-9 ball of fire, would never let me feel sorry for myself or accept any limitations,” Norma recalled. “She constantly drilled into my noggin: You can do anything you want.”
[2]

This woman's courage and commitment blew me away. I had just lost Peter a couple of months earlier, and I felt compelled
to find her. Little did I know then what a special inspiration she would become to me now.

After several calls to
Parade
magazine (there was no internet back then), I learned that she lived in Maryland. Eventually I found her phone number and gave her a call. She talked about her children with great affection.

We have talked every year since then, and I send her a Christmas card with a little something for the children. She now lives in Pittsburgh, and I have vowed that someday soon, we will finally meet. She still has a lot to teach me about relentless parenting. She can teach me how to respond to the tough questions Elizabeth asks me.

  
Amazing Bodies
  

The body is a wondrous thing

The beat of the heart

The work of the brain

All the while it works and works

From the beginning of life

To the endless day-to-day strife

It carries us through this journey that's life

Most people have awesome bodies. Why do I have this one? People think I am a freak. Maybe I am.

In my quest to be a relentless parent, I've discovered a number of “rules” that I rely on to keep moving forward. These may not work for you. We all have to march to the beat of our own drum. These rules are my drumbeat when I am in the heat of the battle.

Rule #1: Survive

In her memoir
A Thorn in My Pocket
, Eustacia Cutler, Temple Grandin's mother, makes an observation that echoes in my ears: “The first truth, I'd stumbled on, all those years ago: if I didn't survive, Temple wouldn't survive.”
[3]
My mother said the same thing to me when I was wallowing in the depths of despair. My Marine father put it another way: “Buck up!”

Recently, I inexplicably herniated two disks in my upper back. The only pain I can compare this to is the pain of childbirth. I think being forced to remain flat on my back for a month was God's way of telling me to slow down before I killed myself.

  
Mom's Pain
  

God, help my mother

She is more dear to me than any other.

She is in such pain

I know that it is hard for her to refrain

From doing for us

Like she usually does.

Let her know we are all OK

And make her better.

My Mom hurt her back. I wanted her not to worry about me.

Rule #2: Never Give Up Hope

Perhaps today's best known autism mom is Jenny McCarthy. In her memoir
Louder Than Words: A Mother's Journey in Healing Autism
, she tells the story of recovering her son, Evan. Jenny worked hard for a relatively short period of time to heal her son—years versus the decades of struggle for some parents. She is wise to recognize her good fortune at the end of her book:

Not all children with autism will be able to make leaps like Evan. Some parents have worked longer and harder than I have, and with no success, trying the same things. I have no idea why some treatments work on some kids and not on others. But I beg moms
and dads
to at least try.
[4]

For more than a decade we have fought the autism fight. After hundreds of interventions, Elizabeth has shattered the silence of autism, but she still cannot speak. Relentless autism parents live by Winston Churchill's creed: “Never, never, never, never give up.”

Rule #3: Keep Fighting

Our children need us to be their advocates. The educational side of the equation is just as important as the medical side for a child's recovery. The school system may not think your child is ready for mainstreaming, but you are the one who knows what is best for your child. With a team approach, most obstacles can be overcome.

Elizabeth shares her fighting spirit with another man who believed in overcoming obstacles:

  
Fight for Life
  

Fight for life

Fight for freedom

Martin Luther King

I would sure like to meet him

I fight for acceptance

Every day of my life

In this, we are alike

Mr. King was brave and determined. Blacks were not allowed to do certain things because of their color. Autism keeps me from doing things as well
.

Rule #4: Look for Ability, Not Disability

Temple Grandin relentlessly pushes for society to find the special capabilities that come with autism. She summed it up with her characteristically humorous candor in a
Wall Street Journal
interview entitled “Life Among the ‘Yakkity Yaks.'”

“Who do you think made the first stone spear?” asks Temple Grandin. “That wasn't the yakkity yaks sitting around the campfire. It was some Aspberger sitting in the back of the cave figuring out how to chip rocks into spearheads.”
[5]

Our children have strengths, and we need to encourage and develop them. Even their obsessions can be channeled into career objectives. If a child is good at systemizing, maybe he or she could be an engineer or librarian or lab technician. Our job is to remove as many obstacles as possible, both medically and educationally, so that they may be productive members of society.

As you can see from this poem, Elizabeth may well end up as an environmental scientist:

  
You Pollute—Stop It!
  

What's going on in the ocean

Causing so much commotion?

There is something dirty here,

Something we should fear.

Come right away and save the day,

Or we won't be able to swim and play

Like we all want to do.

Will you?

I get very upset when I see humans act carelessly toward nature. People don't always stop to think about how their actions can kill innocent animals and destroy natural resources
.

Or perhaps a meteorologist:

  
Thunderstorms
  

An electrical show

Sets the sky aglow.

The pop of thunder

The crackling of a strike

Lights up the night

And gives me a thrill

Like nothing else will.

I felt elated when I wrote this poem. I get very excited over weather. It changes so fast and is often unpredictable. I feel the charge in the air and inside my body. It is an amazing feeling
.

Whether it means trips to the beach or walks in the rain, we try to respect and encourage Elizabeth's interests.

Rule #5: Move beyond the Guilt—It's Not Productive

Most autism moms have the guilt gene. Something went terribly wrong with our children. Was it something we did or didn't do that caused it? We are bound and determined that nothing else harms them. I do worry about Elizabeth hurting herself because she, like many children with autism, doesn't seem to have a fear gene.

For me, the guilt goes deeper. I held Elizabeth down for her battery of vaccinations at fifteen months, and I witnessed autism take hold of her within a week. I believe it was more than a coincidence that Elizabeth immediately lost all language and began rocking back and forth, staring into another world.

I am not anti-vaccine. But I believe children receive too many, too soon, and all of them need to be cleansed of questionable ingredients. And for families like mine, with a history of autoimmune dysfunction, the vaccination schedule should be reviewed very carefully. Parents can and should educate themselves to make informed, appropriate choices for their children.

My rational side knows that my guilt is unwarranted and destructive. Twelve years ago, virtually no research had been done
on the subject, and even today, the medical community cannot say for sure if some vaccines cause autism in some children.

While my head knows all of this inside and out, my heart can be a slow learner at times. I hope to rid myself of this guilt someday, but that day hasn't arrived yet.

Until it does, one of the great gifts that Elizabeth brings to my life is her compassion. I know she senses the heavy burden of my worry for her, and I believe she is trying, in her own mischievous way, to relieve me of this burden. This exchange shows the rare blend of genuine empathy and wry wit that makes her such a blessing in my life:

Rule #6: Love Is Never Wasted

Loving someone is easy when you feel them loving you back. What happens when that love is trapped behind a wall? What happens when you feel that you are pouring your love into a black hole where no light shines out?