Family fights to get help for autistic son
 

Alex, 6, with his sisters, Bailey, 7 and Carli, 2 photo by Belinda Grant
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Alex Gumm, 6, left, uses Fast Forward with sister, Bailey, 7 and Carli 2, at Brain Power in Minden.

Alex is that stastistic, that one of every 150 children that has autism.

April is National Autism Month and his Douglas County family, the Gumms, knows about the struggles of obtaining treatment for an autistic child.

Alex Gumm is their 6-year-old son who was diagnosed as autistic when he was between 1 and 2 years of age.

"At his 18-month checkup, I expressed some concerns I had about Alex with the pediatrician," said his mother Toni Gumm. "He wasn't communicating verbally or non-verbally. He was very serious. I kind of thought he could be autistic."

Toni and her husband, Allen, took Alex to the Special Children's Clinic in Reno after receiving his diagnoses.

“The team of specialists up there gave us a lot of resources,” Toni said. “The most helpful thing they did was have a speech pathologist come down and work with Alex twice a week.”

Those Special Children’s Clinic services are available to children up to 3 years old.

The Gumms attended meetings with the Douglas County School District to discuss the best options for Alex.

“They offered to have him in the TEDDY, Teaching Every Developmentally Delayed Youngster, program” at C.C. Meneley Elementary School,” said Toni. “He had great teachers, teachers that work with all kinds of disabilities,” she said. “At first we were really excited.”

However after two years in the program, they saw no changes in their son. They withdrew him and sent him to the University of Nevada, Reno, Autism Program.

“I had ongoing conversations with the school district,” she said. “My feeling is that the teachers and specialists who worked with Alex in the TEDDY program were great. It wasn’t a problem with the people. It was a systematic problem.”

Before sending Alex to UNR, they asked for a variance, which would enable Alex to attend Carson City School District’s program for autism. However, that school district rejected the application, saying Douglas County should supply care for Alex, according to Toni.

Even though the district’s health insurance did not cover the $35,000 cost for the 14 months of intense treatment Alex received from psychologists, speech pathologists and other specialists in the autism program, the Gumms sent him anyway.

“It’s just one of those things where you find the money and just do it. I didn’t want to have regrets,” Toni said. “We considered selling our home.”

Alex made incredible growth in the UNR program, progressing about three years developmentally with the intense treatment and attention, his mother said.

That’s when the Gumms decided to seek reimbursement for their UNR autism program costs, through a manner called due process. They filed the claim in October 2001.

“As parents, we have an obligation to advocate for our children,” Toni said. “We tried not to. Some things are not fixable.”

At the May 2002 due process hearing, which took four days, officials of the school district and teachers testified.

The Gumms won and the school district will reimburse the family. A district appeal failed.

“I don’t know if I would go through it again,” Toni said. “I am pleased with the outcome.”

A UNR specialist has helped Alex transition into classes at Scarselli Elementary School. Alex, now in second grade, has his own aide, Erin Alvarez, who received training from UNR.

“I could not be more pleased with the people working with him,” Toni said. “Erin knows so much (about autism). She’s very intelligent. She helps the teacher out, especially on the playground. When he gets older, other kids may pick on him because they might view him as different.”

The school district has formed an Autism Task Force, consisting of teachers, speech pathologists and special education teachers.
Because some school districts officials are on break, no one was available to comment on either the due process suit or the progress of the task force.

Alex also received Auditory Integration Training and will be going through a second FastForWord session at BrainPower in Minden.
Khymberleigh Herwill-Levin, a practitioner of AIT, which gives an aerobic workout to the ear using a variety of tones, said that autism is like having a child kidnapped from his or her own body.

She said four of 100 children are being diagnosed with autism.
“Imagine if four out of 100 children were being kidnapped. There would be outrage,” she said.

Herwill-Levin, who discovered AIT after looking for years for ways to help her own autistic child, said a good first step for developing an autism program is hiring a behavioral specialist who can help an autistic child learn to respond appropriately in situations.

“More than one hour with a behavioral specialist is needed a week,” Herwill-Levin said. “Children have to grow up as adults. They are going to cost the country a fortune (in care if programs aren’t developed). But they need to become productive adults.
“Treatment should be a priority. The problem is there are tons and tons of parents spending their own money.”

Today, Alex enjoys making books and misses school when he is on break.

His older sister, Bailey, read a book called “Autism through my Sister’s Eyes” which has helped her to understand Alex’s unique habits. Toni said Bailey has become one of Alex’s biggest fans.

According to the national Center for Mental Health Services, autism should be treated at an early age for best results — just what the Gumms did.

Maggie O’Neill can be e-mailed at mo’neill@recordcourier.com or reached at 782-5121, ext. 214.