This Saturday, April 18, thousands of people will put on comfortable shoes as they have done for the past 12 years for “Walk Now for Autism Speaks,” a massive fundraiser held at the Rose Bowl in Pasadena.
Participating families that number into thousands raise money for autism research and resources for the nonprofit organization by having people sponsor their walk. The annual event raises funds for research and resources for those impacted by the disorder.
Fifty-five thousand people participated in last year’s event and raised $1.88 million.
“I’m proud of this great Los Angeles community that has come together to help raise these much needed funds and support,” said Jennifer Jones, Autism Speaks director of Field Development for Southern California.
“Autism is an epidemic. Every 11 minutes a child is diagnosed with autism — that’s one in 68 children (and one in 42 boys). The annual cost for families living with Autism Spectrum Disorders is an average of $60,000.”
The Walk has encouraged many families to form community support groups.
San Fernando resident, Yolanda Haro, mother of a 14-year-old son with autism and an intellectual disability, has been involved in the walk for several years.
“We walk as a family to increase awareness and meet other families [going through] the same journey,” said the mother of three.
There are rows of booths that provide information and help to provide connections to services. “There’s a lot of information for resources, therapy, legal help. It’s a day of family fun,” Haro said.
The walk is a positive retreat for Haro who, like many parents of autistic children, has faced numerous challenges while seeking help for her youngest son Isaiah.
“It’s a never ending fight,” she said.
Isaiah attends a special education center, is nonverbal, and requires 24-hour care.
“Every year that he gets older, you have to keep yourself educated because there are new laws and things are constantly changing,” Haro noted.
She wants to help other families cope with the challenge.
Haro, who recently sought a seat on San Fernando City Council, ran on a platform that included providing more resources in the city for individuals with special needs. Although she didn’t win, Haro considers the experience a good beginning to raising awareness in her local community.
She has been meeting with other families in her same situation for the past few months, sharing information, tips and support for each other.
Haro quotes a staggering figure.
“The City of San Fernando has 25,000 inhabitants, 5,000 of which have some type of special need,” she said.
So far, 15 to 20 parents meet every month calling their group, Parents of Children with All Special Needs (POCWASN). They compare notes, discuss the need to “advocate,” and offer help to Spanish-speaking families by writing appeal letters when they are denied services. They offer a safe place to talk and share their struggles.
“Some people just want an outlet to vent their frustration,” Haro said. “People just need a person to listen to them.”
Among the group’s goals identified is getting the council to help them secure a specific time each week where the pool at the aquatic center is reserved for children and families of special need. That, Haro said, would give these families and children another chance to bond.
“We just want to let people know they’re not alone,” Haro said.
One major issue that parents of autistic children contend with is people who don’t fully understand the disability.
It can be a serious undertaking to find the right school, teacher, health professionals and therapists. It can be a major undertaking even to take an autistic family member who may be sensitive to light and noise to a restaurant or outing. People can be insensitive and judgmental.
Kameena Ballard-Dawkins has been called a bad mother and anything else you can think of. She’s been accused of abusing her daughter, and neighbors even called the police on her after hearing the child’s screams and tantrums that lasted for up to two hours.
A single parent, Ballard-Dawkins has struggled to keep going and at times simply felt she couldn’t go on.
But her parental instincts knew that those tantrums, words pronounced backwards or constant repetition from movies and whatever else her daughter was watching on television, was not all right.
When her daughter Keena was 8-years-old, the truth — and what Ballard-Dawkins suspected all along — came to light.
Keena was diagnosed with autism, a disorder that can take on so many forms it’s hard to pinpoint, but can affect social interactions and behavior in young children.
Ballard-Dawkins has been involved with the walk for the past three years, and says the event allows her to connect with other mothers going through similar struggles. It also enables her to help other parents by providing them information about resources they might not be aware of.
“It’s a swarm of families, people who understand you. You feel part of a community that surrounds you,” Ballard-Dawkins said.
It’s also a place to compare stories and struggles. And Ballard-Dawkins has faced more than a few.
“My daughter was called ‘spoiled,’” she remembered. “Keena was very rigid. She only wore fuchsia. She would not wear blue. If we dressed her in another color, she would take it off and walk around naked.”
Whenever the air-conditioning turned on, Keena would put her hands over her ears. If her mother moved the shoes the child arranged in a preset order, Keena would have a tantrum that lasted for up to two hours, yelling and kicking to the point where neighbors, suspecting child abuse, called the police.
Things got worse when Keena began pre-puberty around age 9. Ballard-Dawkins began noticing increased aggression and elopement (running away), which eventually landed her daughter in a residential placement.
She only recently got her daughter back at home.
Keena, now 12, has progressed after receiving behavioral and occupational therapy. She also attends a special education school, the Help Group in Sherman Oaks, where these therapies are part of the curriculum.
Ballard-Dawkins’ experience with her daughter helped her notice and catch her nephew’s behavior before it became too late.
Her twin sister Khalilah’s son Kiris was also diagnosed with autism at age 4.
“He did not speak. He was not toilet-trained. He only wears red,” Ballard-Dawkins said. “I immediately saw the signs with my nephew. I urged my sister to take him in and right away they gave a diagnosis,” she said.
Ballard-Dawkins and Khalilah have also performed at the Autism Walk, singing for both their children and the thousands of others who sometimes are not able to express themselves.
“We’ve got to use our talent to give voice for those who couldn’t talk,” Ballard-Dawkins said.
“I love those kids. That’s why I fight so hard for them.”
During this time, Ballard-Dawkins began to learn about resources and interventions to try and help her daughter, who previously had not received such services before she was placed in a residential facility.
“Since I am a single mother, I have also taken the initiative to learn Crisis Prevention Intervention [CPI], ABA and taken both the AGI/Houlton Learner Daily Living and Transitioning courses offered through Autism Speaks in order to support my daughter and newly diagnosed nephew,” she said.
She’s become a “promotora” (promoter) and active Parent Partner for the Children’s Hospital of Los Angeles. Ballard-Dawkins is also the Family Representative for the Autism Speaks-Autism Treatment Networks [AS-ATN] site at the Boone Fetter Clinic in Los Angeles, where she’s currently the co-lead of the clinic’s Puberty and Adolescent Resource [P.A.R.] Tool Kit.
In addition, Ballard-Dawkins volunteers each year for the Children’s Hospital of Los Angeles’ booth at the Autism Walk.
“That’s why I walk. I like to shine a light on this disability,” she said.
“I’m exhausted but I’m still going to help someone, encourage a parent, and just keep the love going. Being a parent is hard enough, but when you have a special needs child you face challenges people can’t even comprehend.”
She recommends that if you suspect your child or family member could be autistic to “trust your gut, your feelings. You know your kid better than anyone, and you want your child to have the best quality of life, so have it checked out if you notice anything.”
“If it’s nothing, there’s nothing lost,” Ballard-Dawkins said. “But the later you wait, the harder it might be.”
Registration, entertainment and stage programs for the Walk Now for Autism Speaks begins at 8 a.m. The Walk starts at 9 a.m. at the Rose Bowl in Pasadena and will continue on a rolling basis every ten minutes through 11:00 a.m. For more information, visit www.walknowforautismspeaks.org.
For more information about POCWASN, visit www.pocwasn.org.
RESOURCES FOR PARENTS OF CHILDREN WITH AUTISM
North Los Angeles County Regional Center
15400 Sherman Way, Suite 170, Van Nuys
Autism Society of Los Angeles
8939 S. Sepulveda Blvd., Suite 110-788, Los Angeles
(562) 804-5556 or visit http://autismla.org/
The Help Group
13130 Burbank Blvd., Sherman Oaks