Advertisement

Archive for Monday, October 11, 2010

Go!

Autism speaks: Douglas County family participates in fundraiser for disorder

October 11, 2010

Advertisement

Ethan Folks, a Eudora 10-year-old with autism, walks his bike up to his home Wednesday. Ethan and his family will be   participating in Walk Now for Autism Speaks on Saturday for the third time. The goal of the event is to raise awareness for autism and to raise funds for autism research.

Ethan Folks, a Eudora 10-year-old with autism, walks his bike up to his home Wednesday. Ethan and his family will be participating in Walk Now for Autism Speaks on Saturday for the third time. The goal of the event is to raise awareness for autism and to raise funds for autism research.

Past Event
Walk Now for Autism Speaks

  • When: Saturday, October 16, 2010, 10:30 a.m.
  • Where: Kansas Speedway, 400 Speedway Blvd., Kansas City, KS
  • More on this event....

Autism is a complicated and often misunderstood condition. Just ask those whose lives have been touched by it.

“He used to be known as ‘The Adam Bomb,’” says Linda Weinmaster, of Lawrence, whose 18-year-old son, Adam, was diagnosed with autism when he was 5 years old. “He would throw himself on the floor with terrible temper tantrums, and he would destroy everything. People just assumed I was a bad parent.”

Or ask Jacqui Folks, Eudora, whose 10-year-old son Ethan has autism. For years Folks struggled going out in public.

“It was so much easier to stay at home than risk going out and Ethan having a meltdown,” she says. “There are so many triggers out there, and we just can’t control them.

“Autism can be very isolating,” Folks adds. “I remember not going to a family dinner once because it was on the Plaza. I wanted to go celebrate with everyone, but I didn’t want Ethan to act up and throw his food.”

Autism is a general term used to describe a group of complex developmental disorders, and while it affects no two individuals in the same way, there are common characteristics among those who suffer from the disorder, including sensory processing challenges, speech and language delays and impairments, and trouble with social interaction.

“Their sensory systems are on full-tilt 24 hours a day,” Folks says.

Dealing with those challenges can be time-consuming and expensive. In addition to weekly speech therapy, Ethan has a private in-home therapist who comes several days a week, to provide social and emotional assistance. Few of these services are covered by health insurance.

Weinmaster, who found help with sensory integration therapist in the Lawrence school district, says, “With autistic kids it’s a constant battle for rights and services. And our insurance doesn’t cover any of this.”

Understanding the myriad of issues facing those touched by autism, Autism Speaks was founded in 2005 with the goal, according to their website, “to change the future for all who struggle with autism spectrum disorders.”

The organization is dedicated to raising funds and public awareness for autism, advocating for families (which includes lobbying to get necessary services covered by insurance companies) and offering support to individual families.

In the five years since the organization has been established, Autism Speaks has awarded millions of dollars in grants, including $941,556 to researchers in Kansas and Missouri who are investigating the causes and the most effective treatments for autism, according to regional Autism Speaks walk director Jennifer Smith.

For families who have recently received the diagnosis, Autism Speaks offers a 100-day kit, which provides information on the disorders covered in the autistic spectrum, including information on causes and symptoms, resources, helpful forms and safety tips.

On Saturday, Folks and her family will join thousands of others to support the work of the organization at the Kansas Speedway at Walk Now For Autism Speaks.

This is the third year of the walk, and while cold weather and flu threats kept people away last year, they still managed to raise $190,000 and had over 5,000 in attendance according to Smith.

The goal for this year is to have 8,000 participants and raise $200,000. While there is no registration fee, Smith encourages donations to help support the cause.

“We will have activities for all ages, a sensory tent, a teen tent … We also have a food area called Taste of Support, and they are local restaurants that support the autism community,” Smith says.

“When Ethan was first diagnosed with autism, I spent all my time in the library trying to figure out what we should do,” Folks says. “I would have given anything seven years ago to have Autism Speaks.”

Comments

Paula Kissinger 3 years, 6 months ago

Adam and my son, who has an autism spectrum disorder, have made wonderful progress as evidenced by their recent high school graduations. This was mostly accomplished because Linda and I do not give up, do not shut up and keep advocating for our guys daily. It took 10 years to get my son properly diagnosed because his disorder presents itself in a manner that mimics other disorders. I knew from the time he was 3 that something was "not right" but had great difficulty getting any professional person to properly diagnose and treat him. We went through 6 psychiatrists, including Menningers when they were in Topeka, before getting a proper diagnosis and managibility plan.

If you believe that your child's emotional development, ability to pay attention, appropriate response to people and situations, sleep patterns or general behavior is not where it should be or if you have the feeling that your child is somehow just "not right" please talk to your pediatrician about neurological and psychiatric testing. Parents know their own child and autism disorders can be diagnosed now at earlier ages with better outcomes.

Partner with autism support groups and secure mental health professionals that can see past your child's exterior to the real issue. My son was misdiagnosed many times with ADHD. One physician tried to convince me that he was just acting out and needed more discipline. Be diligent for the sake of your child. Autism is a scary word to many people with a ridiculous stigma attached. There are many autism spectrum disorders that are, obviously, still overlooked by professionals but staying strong and advocating for your child will eventually result in a proper diagnosis with trial and error medications and cognitive behavior modification.

Remember that this is not something that can be treated...it can only be managed and it is a lifelong process. There are many support groups and services available. I found this out the hard way but managed to get my son a decent psychiatrist, the best therapist on the planet, support from a mental health organization and medical financial assistance beyond our own health insurance. Ask for help from everyone that is willing and never take no for an answer...you and your child deserve the best in life.

0

Commenting has been disabled for this item.