My First Blog Post!

I’ve been meaning to start a blog to track my life this past year, and today is the day it finally happened!  I don’t know where to start, so back to the beginning we go…

Jackson was born May 26th, 2009, at a healthy 8 pounds, 6 ounces, 21 inches long.  He developed nicely up until 15 months of age.  At that point, he wasn’t walking, wasn’t talking, and not engaging like his older sister, Sophie (DOB 8/30/07).  By 18 months, Misha and I turned in the paperwork to Early Start and the San Andreas Regional Center to have Jackson assessed for Autism.  When the results came in, Jackson was diagnosed with Autism.  Our pediatrician and a neurologist also confirmed our worst nightmare.  We knew we were in for a long road ahead.

Jackson received 20 hours of ABA (Applied Behavioral Analysis) and 1 hour of Speech Therapy a week.  For the past year, he has been a busy boy: 2 hours of intense therapy in the morning and 2 hours in the afternoon with a nap in between.  There has been so much to deal with that I had to take the year off from teaching.  With so much therapy and me staying home applying all therapy techniques, Misha and I had high hopes we’d  Jackson progress.  As the days, months and weeks went by, Jackson continued his inability to communicate.  To this day, he does not point, speak, or use nonverbal cues.  He is the happiest of boys, wants for nothing, the sweetest you’ll meet, but empty and emotionless.

His lack of progress was not sitting well with me.  I wanted and needed to know I was doing everything humanly possible for this boy I love so much.  I began reading books about Autism, two  by Jenny McCarthy.  I began going to support groups, both in San Jose (Parents Helping Parents) and at Stanford.  I joined a research study at Stanford hoping it would open doors and give me insight I hadn’t been exposed to about Autism.  We began Jackson on a Gluten Free, Casein Free Diet.  Misha and I signed up to go to the Autism Research Conference in New Jersey in April, 2012.  I couldn’t think of anything else to do except embark ok an expensive journey…going to see a DAN doctor.

The Jenny McCarthy books opened my eyes to an acronym I had never heard before…DAN (Defeat Autism Now!).  I was then on a search to find a DAN doctor who would examine Jackson and tell us what to do with our boy that nobody could get through to.  Since our pediatrician had limited knowledge of the latest Autism research, I was determined to find a doctor up to date with the latest Autism information.  I found a couple of DAN doctors in the Bay Area and finally decided one.  I’ve heard different things from different people regarding DAN doctors.  Most said the doctors are expensive and use unproven treatments.  I didn’t care, it was worth a try.

I’m not very religious, and I don’t know what to think about a higher power, but I now know someone is up there looking out for Jackson and our family.  The doctor we found is not only a DAN doctor, but a specialist in Lyme Disease.  At our initial consultation, Misha, my dad and Jackson sat in the doctor’s office, ready to tell our story, eager to hear his thoughts.  The doctor suggested a bunch of tests to run on Jackson to see what was going on inside our boy.  The tests included: 3 urine tests, 1 hair analysis, 8 viles of blood and a biofeedback test.  We took all our testing materials with us that day and made a follow up appointment for a month later to discuss the test results and come up with a care plan for Jackson.

This brings us to today…February 22, 2010…our follow up appointment with the doctor.  Today, the world shifted, and we finally got the answers we were looking for.  All those thousands of dollars worth of tests and doctors visits were worth it for the information we found out….

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5 thoughts on “My First Blog Post!

  1. Hi Elaine! I just read your post and you’ve got me hooked! My curiosity is getting the better of me and wants to know what you found out about your sweet boy! Looking forward to seeing soon!
    Kristen

  2. So glad Jackson has received an accurate diagnosis and his road to recovery can begin. I will keep you and your family in my thoughts as you all work together to get Jackson through the light at the end of the tunnel. I am looking forward to reading more about your story-thank you for sharing it.
    Ami

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