From Devastation to Acceptance to Advocacy: The Journey of a Mother & Attorney Through the Maze of Autism

I feel as though my true life began in the year 2002 when my son, Aaron, was diagnosed with Autism. Here is Part I of my journey...

First, I will digress to my earlier life, as it sets the stage for my journey.  I grew up in a loving family. My childhood was what some would consider entitled.  I was a good student, had friends, went to a good college and found a meaningful career path in law school.  I married another attorney in 1996, moved to Westchester, and had a wonderful career as the senior associate attorney in a prominent law firm managing the elder law department.

In March of 2000, I gave birth to beautiful twins, Aaron and Rebekah.  They were relatively healthy babies.  However, Aaron was born with one enlarged kidney which, when tested, was benign, and was put on an antibiotic prophylaxis which was to prevent any urinary tract infections which could possibly irritate his kidney.  He also suffered from colic, had reflux, and had many ear infections. I do not remember much about this wild time, but I was a career woman and went back to work when the twins were four months old.  Everything was progressing nicely, the twins hit all their milestones in a timely fashion, and I was balancing my family and career well.

Nevertheless, at about 13 months of age (incidentally right after Aaron’s MMR vaccine), I began to notice that Aaron was acting differently than other children.  He was difficult to engage and loved to line toys up in an order that really only made sense to him.  He was not speaking, and was happy to be left alone in the corner of a room with books.  I was told by his pediatrician, and my family, that he was fine and was just progressing slower (boys are supposed to do that).  So I left it alone for a few months hoping they were right but, in my gut, knowing that there was something wrong.  In the meantime, I became pregnant again; I was working and trying to balance my busy life.

When Aaron was about 20 months old, a friend of mine, who is a speech therapist, told me that she thought that Aaron should be evaluated by early intervention because she was noticing strange behavior.  Again, I took Aaron back to the pediatrician, who told me to say “earth to Aaron” to get his attention, and that this type of behavior was not uncommon for boys.  Nonetheless, when Aaron was two years old, I would stand over him and try to make eye contact with him but he would always look away. 

Finally, I took him to be evaluated by speech and occupational therapists and a psychologist.  They told me at the end of the arena evaluation that Aaron had Autism.  This was a day I will never forget.  I was numb. When I spoke to my family and spouse, they all tried to convince me that he may have some Autistic features but would ultimately be fine.

My insanity began.  Six months pregnant, I left my job to become a full time advocate to “cure” my son and a “stay at home” mom.  I researched Autism and left no stone unturned.  I quickly went to see all sorts of doctor “specialists” – developmental pediatricians, neurologists, psychiatrists, allergy and immunologists, and alternative practitioners.  There was only one consensus amongst them all – that my son was profoundly Autistic, Apraxic, had sensory dysfunction, an auditory processing disorder, ADHD, and was possibly “mentally retarded.” In order for him to make any progress, he was going to need intense therapy (more than 40 hours per week) in all aspects of development, possibly medication, drastic change in diet etc.

I did everything that I could: some that made sense, some not so much and anything that I could afford.  I got him intense therapy, both at home and at school, got specialized behavioral therapy, specialized speech therapy for Apraxia, sensory OT, listening therapy, considered and tried medication, and started a restricted gluten/casein free diet.  I researched the causes of this disorder, and found that along with genetics, that there were several environmental factors that could have contributed to Aaron’s Autism. These included the antibiotics he was on since infancy, toxic mercury in his vaccines, and mercury that I could have ingested while pregnant. 

Finally, a remarkable service plan was put into place for Aaron and I spent my days taking him from therapy to therapy, my nights awake researching about Autism (and being with Aaron – because he never slept). I worried about the baby that I was carrying (that I knew was a boy), and my daughter, Rebekah, who was not getting the attention she deserved.  I paid no attention to my husband, who was working endlessly to provide for our family and was dealing with a crazed wife and his own feelings about the situation. I also paid no attention to myself and was on auto drive to make my son as well as he could be.  Everywhere I turned there was a different program or a different treatment for Autism. 

I tried any of them that made sense to me and that I could afford, and I craved one place that a parent could go to get all of the answers but there was none. So I began the task of compiling a list of programs and services for families.

Please be sure to read Part II of my journey next week.