Seeing life differently: Autism affects Dallas County families
Published 12:00 am Sunday, May 29, 2005
National Autism Awareness Month is celebrated in April. For some local families however, autism is not confined to one month. It is a life long struggle.
“I was always scared of the ‘Big A’ word,” said Gail Stevenson. “It was like having a scarlet letter on your chest. I had worked with special needs children for 11 years and I found myself on the other side of the fence. I was not the professional any more – I needed help.”
Stevenson’s four year old son Matthew has autism.
“At nine months old, I noticed Matthew was different,” Stevenson said. “He would fixate on his hand as he drank milk. He stopped babbling. He made sounds, but it was more like jibber jabber – there was no progression.”
Four times more prevalent in boys than girls, autism affects a person’s social interaction and communication. It also affects each person differently, and to varying degrees of severity.
In addition to developmental delays, Matthew suffered from constant ear infections and hearing problems.
“I never sought help for Matthew until he was two,” she said. “With my nursing background, I would talk to doctors and they would say that he was like that because of his hearing.”
But Stevenson said that because of her work with Dallas County Early Intervention, she knew in her gut that it was more than that. She and her husband Bryan asked an interventionist to observe Matthew.
“She was not there long before she said, ‘do you really want me to tell you what I think?'” Stevenson said.
“I said don’t sugar coat it.”
“Matthew has autistic tendencies,” she was told.
“In my heart, I knew that’s what it was,” she said. “It helped to know, but I really wanted to address issues he was behind in, such as speech and adaptive behavior.”
While her son received services from Early Intervention, she took him to Dr. Jean Corbier, a Montgomery doctor who specializes in developmental disorders. Corbier diagnosed Matthew with Pervasive Developmental Disorder Not Otherwise Specified (DP-NOS).
“This includes a wide spectrum of autistic tendencies,” Stevenson said. “It’s not like Rainman – it’s really easy for the un-informed public to think that they are going to be sitting in the corner rocking. I have family members who argue me down and say that Matthew is not autistic.”
She said that when her son was first diagnosed, she tried to do all of the stereotypical things.
“I didn’t want him to get used to a routine,” she said. “I would change it up daily, until I realized what I was doing messed him up.”
Miranda Green can relate to Stevenson’s experiences.
Samantha, her three-year-old daughter, has autism as well.
“When she was born, everything was fine,” Green said. “But by five months, she wasn’t sitting up and she wasn’t babbling.”
At 15 months, Green, and her husband John had Samantha tested at the Early Intervention clinic. They were told that she was developmentally delayed.
“When she was about two, we started noticing other things besides developmental delays,” Green said. “We started noticing autistic characteristics.”
She made an appointment with Dr. Corbier who diagnosed Samantha with autism.
“When I went to the appointment, I was pretty well prepared,” Green said. “My mother and my sister went on the Internet and did research on autism before she was diagnosed.”
Both Stevenson and Green said that they benefited from Dallas County’s Early Intervention and Special Preschool Education Center (SPEC) programs.
“When Sammy was 15 months, we heard about the Early Intervention Program,” Green said . “When she turned three, we came over here to the SPEC program. I’ll be honest, this has been the best thing for her.”
“As far as her behavior, she was pitching fits five to six times a day, and now, it is only three or four times a week,” Green said. “It’s a battle every day, but, when you get up in the morning, you have to pick your battle.”
“I’ve noticed Matthew getting more verbal,” she said. “I’ve noticed that when he doesn’t want to cope, he will hold up his hand and say ‘wait a minute’ or ‘me don’t want to do.'”
Matthew is also now attending the Little Kids Daycare Center.
“We have three or four daycares (in Selma) that have been very embracing of children with special needs,” said Suzanne Friday, SPEC’s Autism Behavioral Consultant. “We really look at the level of the child – how much structure they need.
I call this a transition program. We get the majority of the issues addressed so that they can be placed in daycares and we can take (further) intervention to them.”
Friday said that in addition to visiting the homes of her students,
she has made trips to churches, libraries, post offices, zoos, doctors and stores.
“A big part of my job is holding the hands of the parents,” she said with a smile.
Donna Murphy is another parent who benefited from Friday’s hand holding.
Her son Justin was diagnosed with Asperger’s Syndrome, a high functioning form of autism.
“He never did start talking at the age that most children do,” Murphy said. “He didn’t interact with other children the right way
Like both Stevenson and Green, Murphy researched autism and found that her son had many signs of the disorder.
“I wrote a letter to Dr. Bashir and told him that I read a book about autism,” she said. “He then referred me to Glenwood Mental Health Services in Birmingham.”
Justin was observed by specialists from the facility, who diagnosed him with autism.
“He was almost three when he was diagnosed,” Murphy said. “We were a little relieved that it had a name. He fell into a moderate or mild category – fits all the time, rocking, flapping and being nonverbal.”
“When he turned four, amazing things began to happen,” she said. “He began talking and he improved by leaps and bounds.”
Like Green and Stevenson, Murphy turned to local agencies for help.
“It’s important for parents to realize that there are services in Selma that they can use,” Murphy said. “Early Intervention and SPEC were at no cost to us, no matter our income.”
Justin is now a sixth grade student at Valley Grande Elementary School.
“Never give up hope,” Murphy said. “Justin had milestones, he just did it on his time table – not ours.”
“The Dallas County School System, Suzanne Friday, and Dr. Fannie Major-McKenzie have been wonderful,” she said. “They helped make sure that accommodations were made for Justin, and any time I ran into a problem, they worked it out with Valley Grande.”
Murphy said that her son has been mainstreamed at Valley Grande since kindergarten.
“Justin is extremely smart,” she said. “He tested in the 99th percentile on SAT science and is reading on the 12th grade level. He loves Einstein and is really advanced in science. He loves to read about the universe and think outside the box. He has his own theories about why we’re here and the universe.”
Justin, who is graduating from the sixth grade with honors, will attend Martin Middle School next year.
“We’re very nervous about that,” Murphy said. “But, they assured us that there will be accommodations to help him change classes. He went on a tour today to look around with his class and my husband went with him. We have been preparing him.”
Murphy said that she and her husband Blake told Justin last summer that he has Asperger’s.
“That has made all the difference in the world,” she said. “Now he has answers. If he gets really upset or wants something a certain way, we’ll tell him, ‘Justin, that’s just your Asperger’s.’ He will think about it, and say, ‘yeah, you’re right.'”
Murphy said that Justin’s first reaction to the news was relief. His next reaction was to go online and read about his condition.
“We’re hoping that as he gets into those preteen years, he will find a buddy online who has Asperger’s,” she said.
All three mothers admitted that having a child with autism is not easy. Among other things, they have experienced difficulties in social situations, with foods, and most importantly, with the attitudes of other people.
“Matthew has a meltdown when he is around a lot of people,” Stevenson said. “But I remove him from the situation, and bring him back when he calms down. I don’t want him to use that as an excuse.”
“It’s important for Justin to eat a peanut butter and jelly sandwich every day at 12 p.m.,” Murphy said. “If he sees someone eat something that he doesn’t eat, he will literally gag. In the cafeteria, they don’t have people sit beside him.”
“The night after Sammy was diagnosed, she was pitching a fit in Wal-Mart,” Green said. “A lady walked up and asked me if she was retarded. I can’t believe that people can be so mean and cruel.”
Despite this, each parent said that their child has enriched their lives in so many ways.
“I think he could get through life easier if he didn’t have this disorder, but it has shaped him into who he is,” Murphy said. “We went through the why him/why us? phase, but as the years unfold and he continues to improve, we see that he’s a gift.”
“Matt is who he is,” Stevenson said. “I look at his life with us as an adventure – some days just have a little more ‘oomph’ to them. I know God brought Matt into my life for a reason.”
“When I look at her, I don’t see autism, I just see Sammy,” Green said. “That’s part of her life and we love her.”
Like most parents, Murphy, Stevenson, and Green desire and expect that their children will lead fulfilling lives.
“Justin wants to be an environmentalist or a scientist working for NASA,” Murphy said. “We jokingly call him out little tree hugger.”
“My ultimate goal is for Matthew to be independent and employed – go to college if he wants and have a family,” Stevenson said. “The sky is the limit. I want him to be happy, content, and first and foremost, have God in his life – everything that any parent wants for their child.”
“My goal for Sammy is to be able to go to an area school, be able to take care of herself, and have options,” Green said. “If she wants to go to college or have a family, I want her to be able to do that.”
Stevenson said that she and Friday are in the process of developing a local support group for families of children with autism and other developmental difficulties. They will provide more information about the group at a later date.
For more information on autism, please visit the Autism Society of America’s website at www. autism-society.org.