Blogging

Blogging is another way I use language to make sense of life and to connect with people. I choose my words very carefully, aiming to allow readers to ‘take a walk’ in the situations I depict by inspiring or enlightening through my words. Below is a taste of how I write from a personal level.

Post published on Epidemic Answers (hover over and click on blog title to read)

Before Autism. After Autism.

Post published on Thinking Moms Revolution (Site is no longer hosted, see blog below.)

Wake Up Society. Autism Is Here.

“I’ll take a quiet life,

A handshake of carbon monoxide,

With no alarms and no surprises”

- Radiohead, No Surprises

My biggest ‘aha’ moment on my, no expenses paid, Autism tour was this – the world doesn’t really think much about the disenfranchised. Especially when it comes to autism and the disabled. Yes. People would rather have that “handshake of carbon monoxide,” than to learn a hard truth.

Too hard to swallow? My point precisely. And if it pleases the court, allow me to make my, very personal, case.

EXHIBIT A

When I first noticed Ezra was behaving different, I had a specialist evaluate him; he dismissed me as another nervous mother. I suppose hindsight would be 20/20, if these ‘experts’ ever bothered to look back. After that, we saw Ezra’s pediatrician who bestowed him with two diagnoses - Sensory Processing Disorder and Speech Delay. Apparently, Ezra couldn’t get an autism diagnosis if he flapped his arms from here to Russia; but I’ve got the fecal smearing stains to prove he had and has autism.

Wait! But don’t ‘experts’ say it’s too easy to get a diagnosis? Thus, causing the inflated Autism rates?

EXHIBIT B

To get treatment for those two diagnoses, I had to spend weeks pleading with Health Department workers, only to receive 60 minutes of speech and occupational therapy per week.

See, inertia creeps from the top down. I recall Governor Cuomo calling autism ‘an unsustainable expense.’ Perhaps he hopes parents surrender to the red tape. It would certainly decrease that ‘unsustainable expense.’

EXHIBIT C

A few months into therapy, Ezra was still regressing. So, I raised concerns about autism to his speech therapist. But, she had another idea, ‘Your son has an attachment disorder with you.’

Okay. So, my son stopped talking, playing, sleeping etc; because of me. Heard the term ‘refrigerator mom?’ It still exists, just has a new moniker. But, here is the kicker, I was so desperate for any answer, so stripped of self-worth; I fully took the blame. To the point that when, a child psychologist finally diagnosed Ezra with autism, I repeatedly protested, ‘it’s attachment disorder.’ Thankfully, she repeatedly told me I was wrong.

Okay, truth prevailed; but not without this ‘expert’ speech therapist leaving her scar on my soul.

EXHIBIT D

Now that I had the diagnosis, I needed to get therapy for my son. This meant we had to see Ezra’s pediatrician to receive the necessary prescriptions for therapy. But when I informed her of Ezra’s autism diagnosis, she rolled her eyes and proceeded to postulate why the diagnosis was false. But this time I held my ground. Finally, after actually watching Ezra, she capitulated that Ezra may have light autism. But her resistance haunted me, I repeatedly thought, “Did Ezra have autism? Or did I do this to him?”

Another expert, another scar.

EXHIBIT E

Ezra had his diagnosis and his prescriptions; so, did the state readily give him services? No.

Once again, I found myself mired in red tape, begging for services. After getting nowhere, I saw I had to work around the system.

I purposely attended a ribbon cutting ceremony where my district representative presided. I hunted him down and told him Ezra’s story. He actually took me seriously and wrote a personal letter to the right person. Instantly, a caseworker called me and told me about the many therapies Ezra could receive.

Did I mention New York is one of the best states for autism services? I’d laugh, if it didn’t make me cry.

THE VERDICT

Society is guilty of inaction and complacence when it comes to autism (and many other issues) but alas, this an autism blog. People see autism rates skyrocketing on the news and may say – WTF! But the majority won’t seek to help, or to learn about these kids, because it’s a downer to find out we may have to change the our point of view. I know it, because I was like that once. It’s just so much easier to ignore the ignored in our pressure laden society; because people are programmed for ‘no alarms and no surprises please,’ as Thom Yorke so eloquently sings.