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“You Know Nothing About Autism, John Snow”

Parent Power: Help Support World Alliance for Families and Children in North Carolina

Zachary
NOTE: We received an email from Zachary's Mom asking us to help support her efforts.  Like most progress in autism, it's the parents who are the engine.  We wish you the best on your event tomorrow night, Zachary.

Dear Friends,

My name is Zachary Honeycutt, I am 12 years old and I have Autism. I did have some language and speech abilities( that I have acquired before ),but now I am non -verbal. I am still struggling with the Toilet-training.

I was diagnosed with autism when I was 28 months.

I love my mom because she worked hard to find out what was going wrong with me at early age(before when I turned 2 years old). Just after my second birthday I started to avoid her eye contact .I developed  obsessions with cars, soccer balls. One of my obsessions too  was , the American flag, ask me why? I don't know.

I love water, mom knows that it soothes me. I can stay  for hours playing with water if I could. I can say my favorite word:" bath, goal, mama, go and of course ball; I love balls and I am so good at Soccer.

One of my first signs were : not responding to my name, acting like a deaf, no eye contact and tantrums for no apparent reasons.

My mom worked as an Interpreter in the Medical field and had worked with children and families affected by autism before I was born. She learned a little bit about autism in real life, because all what she knew about autism was "Rain Man", a movie she saw when she was a teenager....but the reality is beyond that movie. Living with autism and raising me  is quite tough.

What is Autism?

Autism a brain disorder that impairs a person's capacity to communicate and relate to others.

Facts about Autism:

 

  • 1 in 68 children has autism(data from 2012)
  • 4:1 ratio of boys to girls
  • 1 in 58 boys ,1 in 48( in North Carolina)
  • Fastest growing Developmental Disability
  • 100 billion annual costs
  • In ten years the annual costs are projected at 200-400 billion.
  • Cost of lifelong care can be reduced by 2/3rds with early intervention
  • A family with a child with autism will fund 3 to 5 million dollars of services throughout the lifetime of the child.

 

More children will be diagnosed with autism this year than cancer, diabetes, Down syndrome and AIDS combined.

How may I act?

 

  • I have trouble relating to others.
  • I avoid eye contact.
  • I appear to be unaware when people talk.
  • I prefer not to be held or cuddled or might cuddle when I want to.
  • I have trouble expressing my needs ,I use gestures or motions.
  • I can laugh or cry for no apparent reason.

 

After my diagnosis ,my mom had to leave her job. Her journey started; therapists, doctors, agencies, schools......Where to start? When is that going to end?

When I got the ASD diagnosis, my mom and grand mom were devastated. My  mom did her research and realized that  the all therapies like ABA, Floor time , Developmental  Therapy and all the fancy "ones" were the gold standard for autism therapy.  I commenced a program of 16 hours a week ABA with therapists, plus an hour a day of parental therapy. I  did some and mom was  bankrupted, mom could not keep up with the expenses. You have to invest around $40 K if not more per year to do just a little bit.

I am 10 years and after so many years of fighting with  the Regular schools, Mom made the best choice of her  life by putting me  in Metro School for children with disabilities. I am so happy at Metro! I started developing more skills because I love my teachers. I  gets all the therapies at school . What a relief!! because as a single mom ,mom can work and provide for me  and for my disabled grand  mom ,without relying on the "system" for help.

Disclosing my  autism made me  uninsurable for "per-existing condition."

My mom keeps searching and learning to navigate the "system" every day.

Now she is dealing with this question. Who will take care of me  once I come from school? Nobody wants to do it and why? Because  I have  autism and the response :" Sorry we don't have trained teachers to work with your son, because he has autism."

Right after my diagnosis ,my mom founded a nonprofit organization called "World Alliance for Families and Children (WAFAC),designed to assist families and children affected by autism. My  mom advocates for local families but  non- English speaking community as well.

WAFAC Autism ,is a 501(c) 3 nonprofit organization that serves Charlotte North Carolina and the surrounding areas. WAFAC Autism  has grown to over 100 members whose mission is to support individuals with Autism Spectrum Disorder, and their families, by expanding and enhancing opportunities to improve quality of life.

WAFAC Autism's Fundraising Spring Event will allow it to expand, enhance, implement and sponsor many programs, including: Social Skill Education; Life Skill Education; Recreational Programs; Connections Parent Support Groups; Special Interest Program expansions Family Gatherings; Autism Awareness presentations in the community.

All the of proceeds raised go towards WAFAC Autism to fund the After _School/Respite program as well the construction of the " Multi-sensory Room" dedicated to all children with disabilities. WAFAC Autism wants to make programming accessible to all kids living with autism, regardless of financial means. WAFAC Autism acknowledges the needs of this under-served children population .

What: Celebration of the World Autism Awareness Day

When: Saturday April 2,2016

Where: Stratford Richardson YMCA  1946 West Blvd Charlotte NC 28208

Time: 3:00pm-7:00pm

General admission is Free,  but a donation will be greatly appreciated. Sponsorship packages are available at many levels. Please join us  and support the expansion and enhancement of WAFAC Autism " customized education and outreach.

Thank you for your support!!!

By Zachary Honeycutt   Please contact my mom:  Mariame Boujlil

Cell: 704-618-1489              Email:mariame2001us@yahoo.com

Comments

Jeff

First review of Vaxxed hits immediately by Eric Kohn, his claim to fame is curious task. Curious tasks mission statement appears to be astroturf and manipulate public opinion.

 Teresa Conrick

Parents are in the trenches with courage and dignity to get care for so many ill children.

All my best Zachary to you and your wonderful family.

mary w maxwell

One hell of a great article.

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