Ups & downs
Raising autistic child is ‘school of hard knocks’
Alex McCray walks along a line on the field of public school between events of Special Olympics practice Tuesday. Although McCray suffers from autism, he still competes in Special Olympics. — © 2009 Gallup Independent / Cable Hoover

Copyright © 2009
Gallup Independent
By Elizabeth Hardin-Burrola
Staff writer

GAMERCO — William Johnson and his wife, Jennie McCray Johnson, have learned a lot about autism over the last dozen years.

They don’t have advanced degrees, but as Johnson says, their expertise comes from the 24/7 “school of hard knocks” of raising their grandson, Alexander McCray. Alex, now a senior at Gallup High School, was diagnosed with autism when he was 6 years old after one of his teachers suggested the family seek a diagnosis from UNM Hospital.

“She said he had signs of autism,” Johnson recalled. “At the time ... we didn’t know anything about autism.”

According to the Johnsons, Alex was almost completely non-verbal, tended to isolate himself from others, and wasn’t interested in socializing with other children. Rather than playing with cars or other toys in typical fashion, Alex neatly lined them up in a row.

Specialists at UNM agreed with the teacher’s assessment and said Alex showed high levels of autistic behavior.

According to the National Institutes of Health Web site, “Autism is the most common condition in a group of developmental disorders known as the autism spectrum disorders. Autism is characterized by impaired social interaction, problems with verbal and nonverbal communication, and unusual, repetitive, or severely limited activities and interests.” Autism behaviors can range from mild to disabling.

Ups and downs

The Johnsons talked recently with the Independent. They discussed the frequently difficult road they have traveled raising a child with autism, while their adult daughter, Tonia, who has learning disabilities, listened quietly nearby. Alex arrived home from school during the interview and, after receiving a quick bearhug from Tonia, retreated to his bedroom.

According to the Johnsons, their experience with professionals — particularly educators and physicians — has had its ups and downs. Alex has had some excellent teachers, teacher aides, and doctors, they said, but unfortunately those professionals have not always worked here long. Alex has also worked with a number of professionals who haven’t known much about autism, they added, and a few who seemed to have no interest in learning about it. The couple would particularly like to see more training for special education teachers, perhaps through attendance at autism conferences.

Their initial experience with the Gallup-McKinley County Schools was good, the couple said. UNM held a seminar on autism in Gallup, and the Gallup schools sent them to the training. The seminar provided them a very helpful guide book that they still use today, and they learned helpful information about working with Alex at home. They learned the importance of using routines and consistency, and they learned how to use icon communication cards, or cards with images that depict daily tasks. Because Alex is non-verbal, the icons proved to be a very helpful communication tool, the Johnsons explained.

With the family’s move to El Paso, Texas, Alex did well in a small program with an excellent teacher and a couple of other students with autism. According to the Johnsons, the school district was very supportive and sent them to several seminars about autism.

Unfortunately, they said, when they returned to the Gallup schools, Alex started losing the gains he had made. They believe some of Alex’s teachers have not been consistent in their teaching methods, particularly using the icons as a communication tool. McCray Johnson said she has been active in parent advocacy meetings sponsored by the school district in order to speak up and advocate for Alex. “He has to have someone talk for him,” she said. “That’s my job.”

The Johnsons said they have had their ups and downs with the medical community as well. A variety of doctors have prescribed a number of different medications to address Alex’s symptoms. One drug caused paralysis, they said, another caused a drastic weight loss, and another caused an insomnia that kept Alex up all night. It also kept up his grandparents who had to take turns monitoring him.

The Johnsons believe a change in medication may have caused a severe seizure Alex had on Jan. 2, 2008. After the seizure, they explained, Alex’s skills regressed, and the seizure seemed to trigger more aggressive behavior.
“That was a rough year,” McCray Johnson admitted. Since then, the family has been working to re-teach Alex skills he once knew.

Facing challenges

Taking Alex out into the community poses its own set of challenges. The Johnsons said Alex has difficulty in crowds and is very sensitive to loud noises. He sometimes acts out in public, causing people to stare at him or even offer critical comments to the family.

One thing that has helped, McCray Johnson explained, is a simple electronic device that she sometimes pins on Alex’s clothing when he is out in public. The device has a small screen that flashes a scrolling message. McCray Johnson programed a simple message into the device, “HI MY NAME IS ALEX I AM AUTISTIC NON VERBAL,” and she recently hand-beaded a cover for it in Denver Bronco orange beads.

One bright spot for the family is their participation in Gallup’s Special Olympics. McCray Johnson has become a coach for track and field, swimming, and bowling, and both her grandson and her daughter have become participating athletes.

“Special Olympics — that helped us a lot with him,” McCray Johnson said, adding she has enjoyed being a coach, and the experience has helped Alex’s social skills.

“It’s fun to have my mom as a coach,” added Tonia McCray Johnson.

Alex is scheduled to graduate from high school this spring. Although he could remain in high school until he is 21, his grandparents said they don’t think he would benefit from the extra time. Instead, they are hoping Alex can enroll in a special autism program that is scheduled to open in Albuquerque soon.

“After he graduates, we’re planning on moving,” said Johnson, who added he and his wife are willing to move anywhere they can find a good program.

Alex’s lack of communication skills is the issue that concerns the Johnsons the most. Johnson said he fears he has failed Alex because he hasn’t been able to find a reliable tool to help Alex communicate.

“That’s the thing we’re looking for right now — to find people to help us,” McCray Johnson said. She admitted she is disappointed because she had wanted her grandson to be able to graduate from high school with some communication skills. “He’s important,” McCray Johnson said. “We’re going to find a way to get what he needs.

“I haven’t given up,” she added, wiping tears from her eyes. “I haven’t lost hope.”