I Am in Here (14 page)

Like all teenagers, Elizabeth needs to know where the boundaries are:

  
Limitations
  

I have to confess

I am in the midst

Of trying for boundaries

That need to exist.

In my changing life

If we are going to avoid strife

You have to set limits

And expect me to be

What you would like to see for me.

Tell me, Mom, how to act. This is a hard age. I want to fit in and act like everyone else. People still look at me sometimes. Tell me why
.

In many ways, Elizabeth is a typical teenager. She tests the limits we set. She is trying to understand herself. However, her exploration has the complexity of autism mixed in, and that induces additional angst.

Sometimes Elizabeth shocks me with her worldliness. Despite appearances, our children hear everything going on around them. In a recent conversation with Soma, Elizabeth sets out to expand her literary ambitions by writing a play. In it, she reminds me that she is growing up fast.

With this play, Elizabeth is reminding me not to baby her. This is a big challenge for autism parents, especially if our children are nonverbal. We have to remember that they have the same teenage feelings and desires.

In a more recent visit with Soma, Elizabeth had the opportunity to visit with a handsome, seventeen-year-old young man who is also nonverbal. To see these two young people connect was magical. Elizabeth was not having a good morning, but Justin was not fazed and even tried to distract her by asking about something he thought all girls were interested in:

This conversation tells me so much about Elizabeth in so few words. Like most adolescents, she is having a hard time coping with life. Sometimes she is angry and depressed, but she wants to pull herself out of it. She identifies herself as a poet and doesn't care about material things. She is not comfortable in
school because it is not designed with her needs in mind. Her inability to communicate verbally leaves her feeling isolated. It takes patience for talking people to get to know her, because it takes time for her to type out her responses. She wants us to take the time.

  
Bad Days
  

Things seemed strange at least to me.

My day was not going as it should be.

Things were different in an odd sort of way.

If you ask me how I could not say.

Was it better? We'll see

If it keeps happening to me.

Some days at school I am bored. I have to sit for long periods of time. I do not do artwork like coloring. I have a hard time cutting, and I answer questions slowly on my letterboard. Sometimes I am very frustrated
.

Our children grow up, and despite their obstacles, we have hopes and dreams for them. Our dreams for Elizabeth include high school, college, and a happy life, however she ends up defining that for herself. Will we get there? If we manage to get through middle school, the rest will be a breeze.

We All Have Our Stories

With Charles and Gale at Christmastime

  
Thanksgiving
  

A very important time of year

All your family gathers near

Thankful for all that you hold dear.

Let God know

His blessings flow

Into your life like a beautiful rainbow.

(age 9)

Holiday thoughts about traditions and how they are important to me.

O
ur family isn't normal. But what family is?”

Author Patsy Clairmont said it well: normal is just a setting on the dryer.

A family doesn't have to be normal (whatever that is) to survive and eventually thrive. The Bible is littered with families that are far from normal and yet produce the most remarkable people: Joseph's brothers sold him into slavery, and Jacob stole his brother's birthright. Our families hand us good and bad in one big package. They give us our dreams, our craziness, our drive to succeed. To embrace our family's craziness along with the goodness is to embrace the craziness and goodness in ourselves, which we turn around and give to our children.

We all have our stories. Our family seems to thrive on taking everything to an extreme. One piece of our family lore concerns Elizabeth's great-great-grandmother (my mother's father's mother) who was left with five children when her husband died in the influenza pandemic of 1918. She tried hard to make ends meet but was forced to send three of her boys, including my grandfather, whom we call Pop, to an orphanage. When Grand-Nana was about to be evicted, she solved that problem by marrying the landlord. She got her boys back but was forced to live with a crazy man who rebuilt his Model T every weekend.

I suspect that Elizabeth gets most of her brainpower from Pop. Despite his lack of a formal education beyond the eighth grade,
Pop loved reading and learning. Much of his vast vocabulary was gleaned from the
Reader's Digest
Word Power games, which he made me do religiously.

My earliest memory of Pop is listening to him read
Alice's Adventures in Wonderland
. The magic in that book has influenced how I look at the world and its infinite possibilities, even when I've gone through the looking glass into the alternative reality of autism. In fact, it's become even more meaningful to me as Elizabeth and I have journeyed through autism land, a frightening and often baffling world where logic seems to have been suspended.

Like Alice, we're doing our best to find our way home. When we stumble across something that says “drink me” or “eat me,” we often do, hoping this will finally be the key to our escape. But just as Alice doesn't know what will happen to her when she drinks the potion, we don't always know how Elizabeth will react to a new medication, despite consulting with numerous doctors.

In one case, burned forever in my mind, it took us four doctors and six hormone interventions to find the right one for Elizabeth. After five terrible reactions where she would bang her head with escalating intensity, we found a specialist in Dallas who did a nonroutine blood test which finally led to an effective treatment. I remember the doctor saying, “If either of our hormone levels were four times higher than normal and you gave us one of those medications, we'd be banging our heads too!”

That's why they call medicine a “practice.” It isn't perfect.

Some days when I'm making appointments with doctor after doctor, I feel like the Mad Hatter. When will this madness stop? When will Elizabeth be well? Then I look out our window and see the wildflowers dancing in the sunlight in the field where Elizabeth and I walk, and I think of the song from Disney's
Alice in Wonderland
movie that tells us, “You can learn a lot of things from the flowers.”
[1]

Pop loved to pick beautiful bouquets of wildflowers on his daily walks. Purple and white violets, happy daisies, yellow dandelions, and delicate Queen Anne's lace filled numerous vases around our house. On special occasions when we discovered a new flower, I would sit on his lap and he would take out his antique magnifying glass and hold it for me to look through, saying, “See how perfect God made this little flower.”

I carry on that tradition with Elizabeth on our walks, and just as the song says, I have learned a lot from flowers. Silent and beautiful like Elizabeth, they weather droughts and storms. Tiny buttercups relentlessly celebrate life, poking up from between the stones of our walkway and lifting their heads toward the sun.

Those flowers not only remind me of Pop, they also remind me that we, like Alice, will find our way home.

  
Escape
  

I looked down at the floor.

There was a magic door.

Everything in that place

Moved at a snail's pace.