Sunday, August 31 2014 3:28 PM EDT2014-08-31 19:28:29 GMT
Disturbing pictures of an injured kindergartner from Pascagoula have made a mother's call for action go viral online.More >>
Disturbing pictures of an injured kindergartner from Pascagoula have made a mother's call for action go viral online. Friends and family of a Pascagoula kindergarten student have created a Facebook page and GoFundMe.com account claiming the girl was attacked on the playground this week by another student.More >>
Sometimes when the words are important, it's better if you write them down.
"I advocate so other mothers are not told the devastating news," said Bob D'Amelio.
He was reading from a letter he wrote explaining why he fights for those with autism.
Bob's wife Christi will tell you writing the words doesn't make them any easier to read, as you describe the moment you found out your son is on the spectrum.
"I sat on one side of a table by myself with the experts in childhood development area lined on the other side," wrote Christi. "I knew it had to be bad when they placed a box of tissues in front of me."
It was 13 years ago. Their son Christopher was two years old.
"There goes his best friend, his first sleep over, his driver's license, his first kiss," said Christi. " I refused to cry in front of these people even though my heart was breaking and I didn't know what to think. They were sympathetic and felt sorry for me, but as I walked out the door I was sent home with nothing, but the knowledge that life was never going to be the same."
Bob says for the first year his reaction was to ignore what was happening. Christi though refused to accept the predictions that Christopher wouldn't talk or learn or love.
"He's an amazing young man," said Christi.
13 years later after countless hours of therapy, he not only talks, he's curious. He'll ask questions. He goes to school and he's reading. The hope is he'll one day land a job.
"I want him to pay taxes I don't want him to have to take social security, or Medicaid," said Christi D'Amelio. "I want him to be able to be a productive individual in a job that makes him feel fulfilled."
Christopher's parents have learned a few things about themselves as well during this journey. Their energy for the autism cause is without limits. No one in the Charlotte area works harder to advocate and educate. They've been pushing lawmakers to finally pass North Carolina House Bill 498.
It's named after Christopher. It would remove the autism exclusion that now exists on many private insurance plans. Important therapies would have to be covered. More than 30 states have already passed similar legislation. The D'Amelio family has been fighting in North Carolina for seven years.
"These children can't be thrown away to the side," said Bob D'Amelio. "They need to be helped."
They've also raised tens of thousands of dollars for autism research. Bob was the first chair of what is now the annual "Walk Now for Autism Speaks."
"Going to the walk is like my once a year giant therapy session its how reconnect with everyone get re-energized," said Bob D'Amelio.
"One in 88 can't wait," he bellowed from a microphone at the walk last September.
But just last week we found the autism prevalence rate is now one in 68 . A 30% jump in two years. The numbers are even higher in North Carolina. The rate is one in 58.
"Autism is a blessing, it teaches you to be strong, and persevere even when others tell you can't, celebrate the small steps in life, and appreciate what you have," said Christi D'Amelio.
"Don't ever underestimate what we can do, if each person contributes, piece by piece," said Bob D'Amelio. "That is why I Advocate!"
The D'Amelio's work goes on. They ask everyone to put in a blue light bulb on April 2nd to "Light it up Blue" in recognition of "World Autism Awareness Day." The annual "Light it up Blue" Gala in support of Autism Speaks is set for May 9th at the "eXtravaganza Depot" in Charlotte. Click herefor ticket information and here for more autism resources.