Our sponsor TACA has run a multi-page insert in the OC Register (Orange County, California, USA) to help educate readers during Autism Action Month. Below is the first story in the insert. We'll run the other stories this month. Click HERE to see the beautiful, full color insert in .pdf format.
An Autism Nonprofit’s Call for Action
By Lois Evezich
Imagine if you woke up one day and found the child you knew yesterday had faded away. magine that your child’s body was still there but everything that made them who they were was gone. No smile, no laugh, no acknowledgement that you existed, just a blank stare and a diaper full of diarrhea multiple times a day. That’s exactly what happened to the Ackerman family.
“It’s like Jeff disappeared,” said Lisa Ackerman. “In June of 1998, he was a typical 15-month-old boy but then one day he was gone.”
When the Ackermans went to look for answers they received a diagnosis of autism and were told there was nothing they could do. One doctor told them that they would need to look for an institution to care for their son when he was older as he would never improve.
Hit hard by this diagnosis, Lisa and her husband, Glen, found no reassurance nor direction from doctors or other professionals. The support groups that they found offered no real help. They could find no one to answer their questions. It was this lack of resources that led to their founding of the non-profit organization, Talk About Curing Autism (TACA).
The Ackermans refused to give up on their son. The boy who had developed normally and met all his developmental milestones suddenly had regressed. He lost language and social skills. He no longer wanted to be held or touched. He stopped pointing or waving. Cold and similar sensations that should cause pain didn’t bother him. His sleep patterns changed and he often had trouble sleeping more than a few hours at a time. His health also deteriorated along with his behavior and cognitive skills.
“We spent hours and hours online,” Lisa says. One parent would take care of Jeff while the other was at the computer until the early morning hours, searching for answers. The Ackermans read books, went to conferences and sought out professionals in the field from around the country.
Soon, the Ackermans found that they had to address issues regarding insurance, education, abandonment by friends, lack of understanding from family, lack of sleep, financial concerns, and marital stress. It seemed there was no place and no one to turn to for answers or support. However, they met many other families who shared the same experiences and were also looking for answers and support. There were also families who reported seeing autistic symptoms decrease and sleep patterns normalize after specific health related issues, outside the autism diagnosis, were addressed.
It took two years to gain any traction, but as the Ackermans gained knowledge, Jeff started to get better.
“Our biggest realization in this process was that the autism world was highly fractured,” Lisa said. “There was no strong parent community and, most like us, were being told the same thing ‘there is little you can do.’” The Ackermans knew that was not true and so the mission began: Families with autism helping families with autism. It felt right and it became their daily guide.
This is what led to the first TACA meeting. The Ackermans opened up their home to share what they had learned with other interested families seeking support and knowledge. Ten years ago, ten parents met in the Ackerman living room. They were no longer alone. By the time the meeting ended, every parent had agreed to meet again.
TACA grew by word of mouth. Families began to show up with other families who had children diagnosed with autism. Soon their house was full of mothers, fathers, grandparents, children and other family members. Eventually, the house was bursting at the seams and the group had to move to a larger location. The Ackermans found a local church that would donate their space every month. The church would seat hundreds and meetings were now on a regular monthly schedule.
Today, TACA is a leader in the autism community, serving 16,000 families across the U.S. It is a nonprofit organization dedicated to providing families the support and education need most after receiving an autism diagnosis.
“TACA is not a research foundation,” Lisa says. “We are the Real Help Now team for families.”
As more families are affected by autism than ever before, TACA’s services have become critical. According to “Pediatrics”, the Official Journal Of The American Academy Of Pediatrics, October 5, 2009, 110 per 10,000 U.S. children have Autism Spectrum Disorder (or 1 in 91).
TACA’s programs and resources include trained parent mentors, a comprehensive web site including live web chat, 28 chapters across the country, informational guide books and DVDs, annual conferences and military outreach. A recent grant through Pacific Life allowed them to begin translation of guidebooks, website and other materials into Spanish and hire an attorney to help educate families on common legal issues. Additionally, TACA operates a Families in Crisis and scholarship program, which provides financial support and treatment scholarships to assist with medical care in emergency situations.
TACA provides the majority of its programs and services at no cost to families. Where there is a cost for events, TACA families can apply for a scholarship.
With more and more families coming to TACA for help, greater involvement from the community is needed. “With the rate of autism increasing, odds are that autism has already touched your life or will at some point,” says Glen. “We are all part of the TACA community and TACA needs your help and commitment to continue the mission."