Couple offers support to families with autistic children
Allen and Toni Gumm have two beautiful children, both adored and cherished.
One is a girl and one is a boy; one is a dancer and the other a lover of Matchbox cars – you can probably guess which child is which for those two distinctions, but can you tell which one is autistic? Most casual observers can’t.
That is one of the challenges the Gumms face in raising a child with autism, and they’re not alone. In fact, autism is on the rise and is now the third most common developmental disability, more common than Down’s syndrome.
During April, Autism Awareness Month, the Gumms want to help people understand more about their son Alex and his disorder. As teachers, both bring unique perspectives to their parenting – Allen runs the technology lab at Carson Valley Middle School and Toni teaches 2nd grade at C.C.Meneley Elementary School.
Toni said she has had autistic children in her classroom and now, as the parent of an autistic child, feels more compassion for the child and particularly the parents.
“As a teacher, we see it in the schools, and I understand it more now,” she said. “I welcome these children – I always have – but now it’s personal.”
– The beginning. When Alex was born, the Gumms already had another young child – 16-month-old Bailey, and Toni said as soon as Alex was handed to her, she sensed her son was not the same as her daughter.
“I just thought something was different, I couldn’t put my finger on it,” she said. “After we got him home, I kept bringing him to the pediatrician and asking about little things.”
“Alex was irritable all the time, and people told us it was colic, but it wasn’t colic because nothing would calm him down,” Allen said.
After several months of Alex’s nonstop fussing, the Gumms found “the recipe,” as they lovingly refer to it – approved by the family physician, Dr. Joseph Toth – that managed to calm their baby.
“We used dark corn syrup and pear nectar and it worked,” Allen said. “He would finally stop fussing.”
– Characteristics. There are three main characteristics of autistic individuals, Toni said.
“The first thing to look for is repetitive play,” she said. “They like to line things up, or spin a wheel over and over again.”
One of Alex’s favorite movies is Snow White and the Seven Dwarfs and he loves to sit on the floor in the living room and line up his set of Seven Dwarf figures on the coffee table.
“He always puts them in the same order that they are in the movie, and if one gets out of order, he’ll move it back,” Toni said as Alex methodically lined them up. “He also has a different voice for each dwarf.”
As Alex arranges the dolls single file, you can hear him talk in the different voices as he touches each one – the low, throaty voice of Grumpy, the high, nasal voice of Dopey, etc.
The second characteristic experts look for in diagnosing autism is a speech and language delay.
“It differs from child to child, ranging from not talking at all to not being able to understand what is said to them,” Toni said. “Alex will be 4 in October, and he is understanding more, but is nowhere near where he should be for his age.”
The third characteristic autistic individuals display is social withdrawal, Toni said.
“They’re in their own world,” she said. “We could call his name and he wouldn’t respond.”
“We started to think he had a hearing problem, because you could make a loud noise behind him and he wouldn’t jump,” Allen said.
“But when we took his milk bottle out and shook it, he would come running,” Toni said. “So we knew he could hear.”
When Alex was 18 months, his parents took him to Dr. Toth, this time for a hearing test.
“I came right out and asked him, ‘Do you think he’s autistic?'” Toni said. “I mean, I saw ‘Rainman’ and took a psychology class in college, I wasn’t ignorant about autism.”
Toth didn’t diagnose the disorder and referred them to a specialist in Reno where they finally got the diagnosis.
“It was almost a relief to get the diagnosis of autism,” Toni said. “At least we had a name for it. We know now that the key is getting an early diagnosis, and we feel lucky to have gotten one with Alex.”
– Possible causes. Autism is described as a neurological disability that can cause severe mental, social and emotional difficulties. It affects around one in 500 children, occurring four times more often in males.
The cause is still largely unknown, although connections to genetics, immunizations, fever, autoimmune factors, the way their body processes nutrients and other causes, are all being researched. Autism affects individuals differently, from hardly noticeable to more severe cases requiring full-time care. Alex has only a moderate case, Allen said.
The possible connection between autism and immunizations, specifically the measles, mumps and rubella shot, (MMR), was the topic of a House of Representatives subcommittee hearing last week, looking into the possible link.
Though the Gumms don’t think Alex’s MMR immunization was the direct and only cause of his autism, he did have a bad reaction after his, landing the 14-month-old boy in the hospital two days later with a high fever and dehydration.
“There was a marked change in him after that,” Toni said.
“Now, looking back, we do wonder if the fact that he wasn’t 100 percent healthy when he had the MMR was part of the problem,” Allen said. “Some of the recent data suggests that fever is a key factor, and he did have a slight one before that.”
“When you immunize your children, make sure they’re healthy and don’t have a cold or a fever,” Toni said.
There are several precautions families can take to have safer experiences with childhood vaccinations, and an information center hotline – (800) 909-SHOT – is available.
“We don’t want people to stop getting immunizations, because they’re important for our children, but there are some precautions to take,” Toni said. “Breaking up the MMR into three separate shots is one that we are doing.”
– The future. Alex’s strength is his sociability, Allen said. He has no problem coming close to a new visitor, leaning against them, making eye contact and looking every bit like an ordinary toddler with a big smile and wide eyes.
Alex is subject to “meltdowns” when overstimulated, which can include near catatonia to hysterical screams. Rather than keep him sequestered in their Gardnerville Ranchos home, the Gumms choose to get him out and into the real world with the whole family.
“One time we went to see the Nutcracker and – you know how the kids like to sit down front? –well, I sat in front with Alex and the other kids, and the usher came and tried to get me to move,” Allen said. “They were very persistent and I kept smiling and saying ‘No, I’m just fine here. I want to sit with Alex.’ What I wanted to say was, ‘You will want me here if he goes into a meltdown.'”
At the Reno conference last weekend, the Gumms obtained a small card that simply says, “My child has autism. Unusual behavior is one of the symptoms of it.”
And with Alex’s good looks, the card is something they plan to duplicate and carry with them.
Alex is involved in the Teddy program in the Douglas County School District, something he Gumms have high praise for. With all the tools they are continuously learning, the Gumms are optimistic about their son, Alex.
“If he continues to progress as he has, as an adult, maybe no one will know he’s autistic,” Allen said.
“Our hope is that he has friends and relationships,” Toni said. “Some parents want academic achievements and other successes, but we just want Alex be able to have relationships and be happy.”
The Gumms are expecting their third child in August. Allen said the odds of this child being autistic is around 5-8 percent.
“Sure, we’re concerned, but we have every reason to expect that this child will not have it,” he said.
“At least we’ll be informed with vaccinations and we’ll keep up with the research,” Toni said.
The Gumms have a Web site that has links to autism sites all over the world. Their address is gumbyweb.net/autism or you can call them at 265-7689 for more information.
“If there is a child out there, or a family, who is wondering about autism, we’d be glad to help them with what we know,” Toni said. “Don’t be afraid of autism – the earlier you know, the more you can do.”