The Blame Game

Many people who read my previous blog post were surprised at how much I blamed myself for Mark’s autism, and while Ike may not share the same level of “mama guilt”, he can understand what causes me to feel such a deep sense of responsibility. We are constantly having appointments. I mean weekly. Our challenge is to find the most effective interventions for Mark’s unique and complex needs. Mark’s team is made up of over 30 professionals.

Two developmental pediatricians, one that specializes in biomedical/functional medicine (diet, supplements, etc.)

General pediatrician

Neurogeneticist

Two audiologists

Ear, Nose & Throat physician

Pediatric ENT

Pediatric Gastroenterologist 

Developmental Optometrist

Pediatric Ophthalmologist

Pediatric dentist specializing in children with special needs

Dermatologist

Chiropractor

Genetic Counselor

Social Worker

Two Physical Therapists

Four Occupational Therapists

Four speech pathologists

Music Therapist

Special Education Teacher

Two Applied Behavior Analysis therapists (ABA)

And a partridge in a pear tree…

I need to find some economical Christmas presents for these amazing people

 

And as part of these appointments I have to fill out intake forms and evaluations. Most new patient forms are at least ten pages in length and inquire about every detail of our life, particularly my choices made before, during and after my pregnancy with Mark. What medications did I take, what interventions were used during labor and delivery, questions about nursing, infancy, and the list goes on. I swear I have PTSD surrounding his birth, it’s so vivid because I constantly have to relive it. And the questions, which are typically not discussed with us during each appointment, begin to subliminally send the message “you did something, something happened to cause this”.

When I read a news article about a new study linking something to autism, I evaluate whether or not that was a factor for us. I recently read a story about sonograms and their excessive use in relation to the uptick in autism cases. I think about it, and realize I had three with Mark, and I can feel a pit in my stomach. Scenarios like this repeat constantly. Though I enjoy the hunt for new information, the studies can often wear on me since the subject is so emotionally raw.

Autism is such a mystery. So many caring people are trying desperately to identify the causes. I have listened to podcast after podcast, read book after book, and so many variables have been considered. The old theory of cold or “refrigerator mothers” has obviously been dis-proven, but things like additives and chemicals in food, electromagnetic field exposure, medications, and even the controversial topic of vaccines continues to swirl around. So when we found out Mark’s issues all stem from a genetic mutation that wasn’t caused by me, I took the deep breath I had been holding for the last several months.