I Am in Here (13 page)

Every day I grab whatever half-hugs Elizabeth will permit. I want her to feel my love and to find the ways in which she can accept it. For now, that way is primarily the words that I say to her. I tell her that I believe in her. I tell her that she is smart and
wonderful and beautiful. She needs to hear these things even though it seems as if she is not listening. She is listening.

Sometimes it feels like the line in
King Lear
:

How sharper than a serpent's tooth it is To have a thankless child! Away, away!

But these are not thankless children; they simply can't express themselves to us in the ways we are accustomed.

It was a great blessing to me when Elizabeth wrote this poem for Mother's Day. I consider it an anthem for all autism moms:

  
Mom
  

Love like no other,

Unconditional because

It comes naturally.

Always there,

Nothing compares

To the bond that

A mother and child share.

This is a special relationship. Only one person loves you so deeply and unconditionally. I can always count on my mother to support me and help me to be all I can be
.

Rule #7: Keep Their Dreams Alive

In her poetry Elizabeth tells us her dreams of changing the world despite the challenges she faces. In “Hard Things” at the beginning of this chapter, she tells us that “
all things worthwhile come with a price
.” She needs me to be a relentless advocate for her, especially in school, so that she can accomplish those dreams.

Over the years Elizabeth has told us that she wants to be president, a doctor to cure autism, and, more recently, a nun. She has big dreams, and I believe that she will make a difference in the world. In this poem she tells us that life is not always predictable, so we need to follow our dreams today:

  
Happiness
  

Why do people say someday?

Why not today?

If you always say someday,

You may never get to do things that make you

happy.

So go out and be happy.

Make it snappy!

I truly believe people should follow their dreams. If you always put off things you want to do, they may never happen. Life is not always predictable. If you have a chance to do that which makes you happy, do it
.

Rule #8: Be Upbeat

When things aren't going so well at school, I try to be a cheerleader for the teachers who are trying their best. We may not have all the answers right now, but we will figure things out together.

On our long drives to medical appointments, Elizabeth and I try to keep our spirits up by singing songs and dancing in our seats. Elizabeth doesn't need much encouragement. She loves music and always seems to be moving to a beat.

  
Movement of Life
  

Twirling, whirling,

Dancing, prancing,

Walking, talking.

All of life is moving, grooving

To the beat of life.

Life is about going forward and living life to the fullest. We are meant to take care of ourselves and make the most of ourselves
.

Rule #9: Celebrate Your Victories

We look for small victories every day. Did Elizabeth have a letterboard conversation with one of her friends at school? Did she do well at her speech therapy session? Did she try a new vegetable today? Did she get through math without throwing the calculator? Each of these victories helps tear down an obstacle in Elizabeth's path.

These celebrations would not have been possible without the constant support of my own dear mother, Mimi, a How Person to be sure. We spend a lot of time at Mimi's house on the lake where I grew up. Mimi has been there for me, cheering our daily victories as well as cleaning up the messes. Sometimes the days get long, and it helps to have Mimi telling me that “this too shall pass.” And those days do pass and better ones follow: days when we celebrate having a good day at school or learning to swim underwater. Mimi never looks backward, only forward. She says she doesn't have time for dwelling on the past. Instead, we take each day and celebrate our small victories.

Rule #10: Be a Victor, Not a Victim

Victor Frankl wrote about choosing happiness in his classic book
Man's Search for Meaning
. Frankl was an accomplished psychiatrist when he was sent to a concentration camp in Nazi Germany. During those terrible years, he was surprised to observe how some inmates survived and how others perished. His resulting philosophy concludes that we all have the choice, no matter how difficult our situation, whether to be victims or victors. It is beautifully fitting that Frankl's parents gave him the name that they did.

Frankl writes, “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms—to choose one's attitude in any given set of circumstances, to choose one's own way.”
[6]

Despite her trials, Elizabeth chooses to look on the bright side of life. She says of this poem, “
I wrote this acrostic poem at school. We were to use the word EMOTIONS. I chose to be positive and write about happy times. I like being happy and smiling
.”

In the concentration camp, Frankl saw how those who chose to be kind and positive were the ones who were more likely to survive (see Rule #1). They were relentless in their desire to live.

So are we, for the sake of our children.

Be Flexible

Right before my middle school blues

  
Turmoil
  

It is hard growing up.

My thoughts don't stop

Arguing and commenting

About my autism.

It is hard growing up.

Life is long and big.

My thoughts don't stop.

(age 12)

People don't get it! I have autism. I am different. I am how God made me. I am acting like I do because it is part of autism
.

M
iddle school has given Elizabeth a whole new set of challenges. In the transition to adolescence, and from the very personal approach of elementary school to the more institutional approach of middle school, she has lost her footing and has frequent meltdowns. Elizabeth did well when a teacher was able to get to know her, but the middle school model of eight teachers for only forty minutes each day was not allowing them to understand her or her to understand them.

Because the middle school schedule was so stressful, we moved to more one-on-one instruction, but that also has a drawback: increased isolation. We asked Elizabeth why she said that school was hard for her, because she excels academically. She typed, “
I feel alone and I know it is going to be that way
.” Our plan had been to continue with mainstream education, but plans need to be flexible in autism land.

That reminds me of my middle school English teacher. On the first day of class he asked us what would be the most important thing that we could learn that year. Many enthusiastic hands shot up with answers like “how to be a good writer” and “to appreciate literature.” Wrong, wrong. His answer was: learn to be flexible. He said that life would throw us curveballs, and we had a choice to be flexible and roll with the punches or to be rigid and end up broken. At the time I thought that he was giving us vocational advice, saying that we needed to prepare for
multiple careers during our lifetime. Now I wonder if he had a child with autism.

Despite our desire for Elizabeth to succeed in mainstream school, we have to be careful not to put too much pressure on her. She wrote this poem when she felt the pressure of four days of New Jersey state testing (the New Jersey Assessment of Skills and Knowledge test or NJ ASK) weighing on her:

  
School Days
  

First day of school,

So many rules.

A teacher that yells

Instead of tells.

Lunches so loud

My head pounds.

All the lunch aide does is frown.

NJ ASK testing

On a lot the scores are reflecting.

“Last day is here!”

I say this with good cheer.

I have been blessed with people who have worked with me, but some people are not as compassionate or understanding as others. I was extremely stressed when preparing for state testing. I felt fear and stress in the classroom air
.

On a recent visit with Soma, we used our time trying to figure out how to make middle school tolerable for Elizabeth:

In this conversation, I was struck with Elizabeth's juxtaposition of walking on eggshells with walking on water. Why would Elizabeth say that Terri walks on water? Is it because they have been together for almost a decade? Or is it because she came with us to Wisconsin in January when it was frigidly cold as we chased yet another “speech expert”? Is it that she read the entire Harry Potter series to Elizabeth in our HBOT (Hyperbaric Oxygen Treatment), a tubular oxygen chamber that is supposed to help Elizabeth detox but makes me squirm with claustrophobia? Or is it because Terri has stood by Elizabeth through it all? Yes, it is all this and more. In our home, Terri walks on water.

Elizabeth has asked us for a lot of flexibility, and we will try to make school as accommodating as possible. More walks, more projects, more silence. Of course, the “no tests” part of the request may be hard to accommodate.