Rangely parents have decided to focus on son, not his disability
They would have never guessed he was autistic.
“Being parents, we had 101 excuses why he wasn’t talking. Maybe his older sister was doing the talking for him,” Kim Long said. “We were concerned about his hearing. You would walk into a room and say, ‘Evan, Evan,’ and he wouldn’t respond. He could hear us, but he didn’t respond well socially. He didn’t know how to.”
The Longs’ son, Evan, was diagnosed when he was 2 1/2 years old. The news came as a shock.
“I remember thinking, ‘What?’ My first thought was, I had seen the movie ‘Rain Man’ about an autistic savant,” Kim Long said. “For several weeks, probably, it was a mourning process for us as parents. You watch a lot of your dreams for your kid die. The ‘what ifs’ take over. Is he ever going to speak? Is he ever going to go to college.”
“We thought he had a hearing problem,” Clete Long said. “They said, ‘No, his hearing is good.’ We didn’t think beyond that. So it was shocking. It’s about as close to finding out about the death of a loved one as you can get.”
Eventually, the Longs came to accept the situation.
“It was a long process we both went through, but, one day my husband looked at me and said, ‘The bottom line is this: He’s the same kid before we heard that word (autism), and that’s how we need to look at it,’” Kim Long said.
“We finally came to the realization, the kid didn’t change, you just added a word,” Clete Long said.
That was nearly eight years ago.
Now, Evan is 9 and a third-grader at Parkview Elementary School.
“We decided to raise our child, instead of raising the disability,” Kim Long said. “We decided to stop reading all the books about autism, because he hadn’t read those books. So, we just decided to start raising Evan, and he has amazed us ever since.”
Looking back now, the Longs can see the signs, but at the time — before Evan was diagnosed — they had missed them.
“Basically, (autistic children) have deficits in three areas: Socialization, they have trouble relating to other people socially,” Kim Long said. “Speech delay is another one. Evan was 2 1/2 when he was diagnosed, and he was nonverbal. And sensory deficits. They avoid eye contact. They have trouble with noises.
“A good example of that is, we used to live in Durango, and when we’d go to the Wal-Mart grocery store, he would throw a huge temper tantrum when we would go to the freezer section. We found out later, after he was diagnosed, that he was hearing the fans, which the rest of us couldn’t ear, and it hurt his ears,” Kim Long said. “Another example like that is when we went to the museum of natural history in Denver and saw the Titanic display and my husband asked Evan what’s wrong. He said, ‘Can’t year hear the colors?’ It was the halogen lights. He was amazed we couldn’t hear them.”
Evan’s autism has affected the entire family, including older sister Hannah, who is 11.
“She was only 17 months old when Evan was born, so she’s been dealing with autism almost all her life,” Kim Long said. “She’s always kind of been his mentor. She’s very protective of him. Now, she can beat up on him, like a big sister can, but other people can’t. She was always his interpreter for a lot of years when he didn’t have much speech. She has her struggles with it, too … having the brother who is different and a little off from the normal kids.”
Evan’s classmates at Parkview are also supportive.
“He’s very integrated into his classroom at school,” Kim Long said. “Many of the kids in his class have been with him since preschool. They have been mentors for him. They have become his champions. They adore him.”
The Longs recognize that, to outsiders, Evan’s behavior can appear “different.”
“He will talk to himself, or he will repeat an activity over and over again,” Kim Long said. “Sometimes he gets really frustrated and it looks almost like he’s angry. Imagine going through life with duct tape over your mouth. It’s a speech thing, where they really struggle to talk.”
For his part, Kim Long said her son has some understanding that he is different from other kids.
“I think he’s starting to recognize he is different,” she said. “There’s some recognition on some level. The more he develops, the more he notices that sort of stuff. But right now, he’s pretty ambivalent about it. Maybe that’s a gift, that he doesn’t have a lot of concern about what other people think.”
Evan has a new paraprofessional this year at Parkview Elementary, Jordan Salisbury, who works with him every day.
“He and Jordan are buddies,” Kim Long said. “This is the first time Evan has had a male para, and it has been amazing. The dedication of the people who do this … they are phenomenal. You have to love what you do. They don’t do it for money.”
Evan has tested well in school.
“Intelligence-wise, he is amazingly smart,” Kim Long said. “He scored one of the highest scores of math in his class. They show him at a sixth-grade level, and he reads at a seventh- or eighth-grade level. He has taught himself by ear to play Beethoven’s Fifth (symphony) on the piano. He knows how many classical songs, I couldn’t guess, and he can tell you who the composer is.”
As Evan matures, a question the Longs will have to face is whether he will be able to be independent at some point.
“We don’t know. That’s still a what-if question,” Kim Long said. “We’re still raising that what-if question. We never expected him to be where he is now. His growth has been phenomenal, so I don’t doubt at some level he will be able to be independent, but we don’t know. It’s still that what if. We’ve even talked about putting something in our will. Even as his sister gets older, is that something you want to put on her, if something happens to us?”
Clete Long works at the Williams Willow Creek Gas Plant. Kim Long is the director of the Rio Blanco County Department of Public Health and Environment. Not that being a registered nurse has made it any easier to deal with Evan’s autism.
“I would love to say that it gave me a huge advantage and we were miles ahead, but we started at square one, just like everybody does,” Kim Long said. “None of them do what the textbooks tell you they would do, because behind the autism is a child. Autism is a label, but these are kids.”
It’s estimated that one in every 110 children in the United States is diagnosed with autism, and that one in every 70 boys is autistic. The cause of autism is unknown.
“There are a lot of theories,” Kim Long said, including one that linked childhood vaccines with autism. But Long doesn’t buy that one, either personally or professionally.
“A study was published in 1998 and linked autism primarily to the MMR (mumps, measles and rubella) vaccine. It was the first real medical link to anything as a cause for the disorder. From there, additional theories were developed, one linking autism to a preservative called thimerosal that was used many vaccines. In 2001, thimerosal was pulled from all vaccines, with the exception of multi-dose flu vaccine vials,” Kim Long said. “Still autism rates continue to grow. I hope the retraction of (the 1998) study will help change the minds of a new generation of parents. I don’t know how much this will change things. Many parents believe that vaccines cause autism. That’s what they have heard, so that’s what they believe.
“The health department’s stance is that there is no link between childhood immunizations and autism. That has been our stance since before this study was retracted. In areas that have low rates of childhood vaccination we are starting to see illnesses that were once a thought to be nearly eradicated coming back, these include polio and measles — very dangerous illnesses.
“My personal stance is that there is no link between vaccines and autism,” Kim Long said. “Both of my children are fully immunized.”
Autism can be misunderstood, because the children who have it don’t look any different from other kids.
“These kids look perfectly normal,” Kim Long said. “But we realize our normal isn’t everybody else’s normal. So you have to find the humor in it. If you didn’t, it would make you crazy. You could take this seriously 24/7, but life is too short for that.”
“When you say autism, most people think of ‘Rain Man,’” Clete Long said, referring to the 1988 movie starring Dustin Hoffman and Tom Cruise, which won an Academy Award for best picture. “But (the range of autism) can be from severe impairment to genius.”
Like any parent who would naturally be protective of his or her child, Kim Long said it can be hard to watch how others react to Evan in public.
“I had a lady walk up to me in the grocery store and say, ‘That’s the kind of thing if you don’t get that under control now, you’ll regret it later,’” Kim Long said about a time when Evan was acting up. “Sometimes I think autism should come with a warning statement you can put on a T-shirt and wear in public places.
“But this is how we live. Sometimes when we talk about things that go on at home, people look at us, and it strikes me that none of them live like this, “Kim Long said. “Now (when she sees the parent of an autistic child), I’m the first one to walk up to them and say, ‘You’re doing the best you can.’”
