Letters to My Daughter

Like a good number of women who get pregnant, I bought a "pregnancy journal."  Being pregnant was one of the few times in my life that I felt totally comfortable being self-absorbed.  I recorded everything... doctor visits, my distressing weight gain (in my eight or ninth month, I refused to get on the scale.  Turns out, they cannot force you to do this.  Remember that!), smells that made me want to puke.  (Bacon was a primary trigger for waves of violent nausea.)  

I also noted every emotion I was feeling, the near-daily fluctuations of the names I was considering (that alone is worth jotting down.  Someday you'll be stunned by what you were batting around.)  

After Austen was born, I did not stop my journaling.  I wrote love letters to her every day.   My reason for doing this was much more than the "chronicling-every-minute-of-her-life" aspect of diary-keeping.  What I wanted was for my daughter to realize I was a real and fallible person; that despite being her mother and the fact that I loved her dearly, I still wanted to have a life of my own.  So I recorded my hopes and dreams and accomplishments, and mixed them in with her daily developments.  Someday, I hoped, she would read these things and know me as me, not just that scary icon of "mom."

What I did not know as I was writing each evening is that what I was leaving out of the journals would be far more important in many ways than what I was putting in.  

When Austen turned two, it was fairly clear that something was wrong.  Little things, it seemed, at first.  She did not point at anything.  It was hard to keep her attention.  She often wouldn't respond to her name and would rarely look me, or anyone else, directly in the eye. She stacked books endlessly in her room; not looking at them, just stacking them.  

By eighteen months, she had far fewer words than did most toddlers her age, and she rarely said three words together by age two.   When I took her to mother's groups, the other children would stay fairly close to each other, or their mothers. I, on the other hand, chased her everywhere.  Or watched her stuff her pockets with pebbles so that she could throw them down the slide.  

People started to whisper to me the worst word I could think of.... "autism."  But how could this be?  There was no one with autism or Aspberger's Syndrome in our family.  And I clung to the words of my pediatrician, who admonished me by saying that because I was highly verbal, that I expected my child to be as well.  Others told me I was just being a first time neurotic mother.  I could take that.  I hoped for that.  But it was not so.

By three years old, Austen had been kicked out of three preschools.  Her wandering became worse and worse.  In one classroom, the teacher had to push a bookcase in front of the door to keep her from leaving the room.  All this went into my journals.  

Looking at all the highlights condensed here, it probably seems difficult to understand how her condition could not be immediately apparent.  But time is fluid, and some days were better than others, some days worse.   Having the journals, though, made it easier for the people who eventually did diagnose my child to see the patterns.   There is no "test" for autism.  There is still no consensus on what causes the disorder.  My information, what was there and what was not there, was more helpful than I could have ever known.  

I don't know if Austen will ever read the twenty-five or so volumes of journals I completed or that she will ever know the "me" I wanted her to know.  The journals tucked away in boxes.   But I now have a complete record of our difficult journey together, how I changed, and how she changed as well.  I had to give up what I thought she might be, who I thought I might be, and accept a different reality.  

If you suspect your child might have autism, I encourage you to take a look at this checklist from the Mayo Clinic.  If your child has already been diagnosed, I hope you will participate in The Ian Project.  The Ian Project "is an innovative online project designed to accelerate the pace of autism research by linking researchers and families."