Jodi Gomes: “My Story”

My son is a bright, energetic, eager 12 year old diagnosed with Autism Spectrum Disorder.

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(Khalil age 13 months)

His most profound area affected is language and articulating clear and concise thoughts. My earliest memory of Autism Awareness goes back to a moment when my dad and I were watching Law and Order: SVU in Atlanta. The episode was about ‘Autistic’ kids, who were cliché, over the top Rain Man-like characters. My son, Khalil age 17 months was tantrumming in his walker, not yet talking, just babbling and didn’t crawl.

My dad asked out of the blue, “maybe Khalil’s Autistic, maybe that’s what’s wrong with him?”. The only problem: I didn’t notice anything wrong with him besides his finicky eating and fussiness, and certainly didn’t know other people thought there was something wrong. I remember an immediate and enormous ball full of anger, fear, shock, disgust, panic and sadness sunk to the pit of my stomach. I secretly went into my private bathroom and cried. Then vomited. Then cried some more. Autism?

“Oh my God, please don’t do this to me Lord”, I sobbed.

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(Khalil age 2 with family friend Denzel Washington)

Then in my Mommy Warrior way, I dug in. I put my hands on every article, literature, interview, blog, YouTube video and parental testimony I could find. At that juncture, my son had passed every milestone with flying colors. He never crawled, but went straight to walking at 17.5 months. He babbled, made age appropriate letter and vowel sounds, had great eye contact and was a social butterfly (for his age).

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(Khalil age 2.5 having Absence Seizure)

As we moved into age 2, he accidently received TWO MMR shots by his then Primary Pediatrician. Almost immediately, he became more and more distant.

His eyes glazed over, he was always staring into space and completely stopped making any discernable noises or letter sounds. He seemed to stop thriving along with his peers and missing more and more milestones. This weird thing called Absence Seizures started.

Finally a more concerned Pediatrician referred us to a developmental Pediatrician, who diagnosed Khalil with PDD-NOS at age 3, then finally Autism Spectrum Disorder in kindergarten at age 5.

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(Khalil age 5)

I will never forget the circles I ran in, the many ill informed doctors I encountered, the seemingly never ending tests which lead us nowhere and the horrid dead ends to finding HELP. I was completely alone, there was no Twitter and Facebook and I had to simply lean on another parent who’d walked my walk before me. She was filled with information from trial & error, and more importantly SHORT CUTS. I promised if I ever got a handle on my son’s condition and whether he was able to recover or not, that I would be a vessel and beacon of light for other Mommy Warrior’s and families lost in the darkness equated with Autism.

In persistent, unwavering conviction, I created this foundation to provide SHORT CUTS ~ to lessen the heavy burden on families to receive proper EARLY diagnosis and services. I squandered many years chasing my tail in my child’s most formative years for effective “early intervention”. I will not rest until other families avoid the red tape of Regional Centers and others who claim to offer EARLY INTERVENTION, yet still take 2+ years to actually start services.

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(Khalil age 6.5 in 1st grade, RECOVERY)

I further want to put Autism Awareness on a bigger National platform; empower the children affected by this condition; and most importantly UNITE PARENTS in the struggle, so that our collective voice may be recognized, heard and accounted for.

WAKEUP FOR AUTISM. I did ~ And here’s our progress by 1st grade.

Sincerely,
Jodi Gomes
Founder, WAKEUP FOR AUTISM