The Morning Blend
Welcome
Complete Media Kit
SIERRA VISTA — Your household may be a challenging thing to manage, but the Wilsons probably have you trumped.
The Wilsons must travel about town in a 12-passenger van. Because of the kids’ varying diagnoses within the spectrum of autism, pull-up and diaper costs are higher than the average family. The Wilson household sees collateral damage to televisions, kitchen appliances, couches and other furniture.
DVDs have been known to end up in the toaster.
The windows of their home must be heavy duty, and the doors lock from both sides.
 Lynette Wilson and her five children, from left, Seth, 6; Sean, 8; Matthias, 5; Spencer, 8, and Mara, 12, in the living room of their Sierra Vista home. Each of the children have some degree of autism. (Ed Honda-Herald/Review) |
No, this is not the description of a zany college dormitory nor a day care for bobcats.
It’s a faithful Mormon family of seven. And it is admittedly chaotic, said their mother, Lynette.
“We’re basically running a group home here without any pay. What gets us through is our faith,” she said. “Our job and our goal right now is this: Promote as much independence as they can stand. I think it is possible. They could live on their own, and they could hold high-paying jobs.”
Lynette, 34, and Tod Wilson, 35, are the parents of 8-year-old twins Spencer and Sean, 6 1/2-year-old Seth and 5-year-old Matthias, and their sister Mara, 12.
Autism spectrum disorders are a group of developmental disabilities defined by significant impairments in social interaction and communication and the presence of unusual behaviors and interests, as defined by the Centers for Disease Control and Prevention. It begins before the age of 3 and lasts throughout the person’s life.
Autism spectrum disorders cover a wide range of behaviors and abilities, and like all people, people on the autistic spectrum are very different in how they act and what they can do. That is, no two people on the autistic spectrum have the same symptoms, according to the CDC.
Every day is an challenge for the Wilsons — even the normal daily affairs we may take for granted, such as eating and sleeping.
A new diet
In 2005 the Wilsons attended a conference in Chicago and brought back new ideas about their kids’ diet and how it relates to their autism.
“That’s when the twins finally potty trained. I really think it was the fact they were doped up all the time on the gluten and the casein,” Lynette said. “Anything they were jonesing (craving) after they told us to get rid of because they were probably getting high off of it.”
The Wilson kids would “get high” from things like pizza, apple juice, mozzarella cheese, French fries and chicken nuggets because of the kind of carbohydrates in them.
The family knew a gluten-free/casein-free diet is typically recommended and had tried it, but GFCF foods are more expensive and often taste bad.
Their progress had plateaued on the GFCF diet, but the specific carbohydrate diet the Wilsons learned about in Chicago has brought about new and better results.
A lot of kids with autism have a damaged gastrointestinal tract that is the result of overuse of oral antibiotics, Lynette said. The result is a “long, leaky gut” condition of frequent constipation and diarrhea. A change in diet is preferable to costly and invasive gastrointestinal testing.
The special specific carbohydrate diet the kids are now on comprises all home-cooked meals that exclude certain troublesome ingredients.
“They’re able to eat a broader variety of better foods,” Lynette said.
The results are less brain fog (staring off into space), better communication and decreased autistic and self-stimulative behavior.
“But it was pretty nasty going through it because they were going through withdrawal,” she said. “If you eat something off the diet, you can see the effects immediately, and they last for a long time.”
All four of the Wilson boys are on the specific carbohydrate. The only sweetener they eat is honey, she said, and caution has to be taken about fruit intake because the naturally occurring sugars can get the kids “high” also. The Wilson boys do not eat grains.
She recommended a book called “Breaking the Vicious Cycle” to learn about specific carbohydrate.
The twins and a ‘paradigm shift’
“When they were babies, they grunted at each other from across the nursery, until they put them in the same bassinet,” Lynette said.
Twins Spencer and Sean have experienced what their mother calls a “paradigm shift” following a summer camp this year.
After the 2005 success from a dietary perspective, another giant step is under way that began when the whole family attended Kris’ Camp in Flagstaff in July.
Kris’ Camp is a branch of therapy-intensive and respite camp for children with disabilities and their families.
Lynette said the controversial “facilitated communication” therapy the kids participated in at the camp had hopeful and interesting results. Kris’ Camp takes on a perspective that autism is a “psycho-motor-regulation disorder,” involving a “dyskinesia” between cognitive function, sensory input and output, and muscle function, she said.
The facilitated-communication methods at Kris’ Camp involved the boys expressing their thoughts via typing, and she showed the scrap book she kept that documented the family’s trip to Flagstaff last summer.
At the camp, the counselors didn’t tell the kids what to type. The counselors just held the kids’ arms and let them type out responses.
Spencer typed “yellow, happy, sun” regarding his favorite color, and at day two of the camp Sean typed, “It’s hard not to run as my body just goes.”
Spencer, who has been having trouble at school this year, typed “school makes me sad. Mom gets mad. They just don’t understand.”
Lynette said that punctuates the conflict with the school’s program that all four of her boys are enrolled in. She said the program director does not agree with the Wilson family about the degree of usefulness of sensory-integration therapy nor facilitative communication. The dietary intervention applied by the Wilsons is not strictly enough enforced during the school day either, she believes, because access to things like doughnuts is sometimes too easy for her four boys.
Spencer complains he is misunderstood at his day-to-day school program.
Such misunderstanding is common for laypeople or those who lack experience with autism, his mother said.
Autism can be misinterpreted as a hyperactive disorder — though that is not too far a cry from the autism diagnosis, Lynette said.
“It’s almost like obsessive compulsive disorder, but like on steroids,” she said.
“I love guitar and musik” and “tye dye feels cool to touch” were phrases typed out by Matthias during facilitated communication at Kris’ Camp, Lynette said, which is indicative of the vibrant function inside an autistic kid’s mind. To talk about the kids right in front of them like they are “not in the room or retarded” upsets Lynette because she knows they hear and understand that conversation.
“And with camping, the fact is they’re literally building new neural pathways,” she said.
Kris’ Camp was especially helpful and eye-opening for the twins, if difficult for them because of the parts of the program that resemble physical therapy, she said.
Seth’s autistic condition is not far from a diagnosis of Asperger’s syndrome, that is, he is high-functioning in the scope of an autism diagnosis, Lynette said. The acuity of the Matthias’ condition is somewhere in between his next-oldest brother and the twins.
The boys’ sister Mara, who is the oldest, is on the Asperger’s syndrome part of the spectrum, and is enrolled with the regular student population at a middle school in Sierra Vista and plays an important part in helping at home.
“Sometimes she does feel very isolated,” Lynette said. “She does help a lot, and I don’t thank her often enough.”
District deals with autistic kids
Sierra Vista public schools comprise about 7,000 students, of which about 800 are special-needs students. Of those approximate 800 students, 61 are diagnosed within the autistic spectrum, said Rob Dillon, the district’s director of pupil personnel services.
“But that’s not atypical (of the national trend), I think that’s close to the mark,” he said in terms of distribution throughout grades kindergarten through 12, with the frequency higher in the younger grades.
In recent years, diagnoses of children within the autistic spectrum have increased.
“I think there has been a surge, and it’s matched by the distribution in the school district. And I think that match has been identified nationally,” Dillon said.
An increase in diagnoses within the autistic spectrum is apparent, though notwithstanding the fact that autism seems to be more prolific in recent years, Dillon said.
“Parents of such children are urgent to find the cause. There are some hereditary links, but it seems beyond that,” he said, which not surprisingly echoes the sentiment of the Wilsons.
At the elementary level, there are 29 children diagnosed within the autistic spectrum.
Two elementary schools in the Sierra Vista district that house two classrooms each — Village Meadows and Town and Country — are appropriated to handle the special education classes.
“We have to do that because we don’t have enough teaching resources to distribute them throughout all six elementaries,” Dillon said.
The majority of children who are characterized as having autism are typically identified as needing special-education services to some extent, and of course some require more than others because of the wide range of the autistic spectrum, Dillon said.
So it ends up being a case-by-case policy per student, and Dillon reiterated that integration into the mainstream curriculum, as much as possible, is heavily emphasized.
“The four classrooms that I’ve mentioned (at Village Meadows and Town and Country) predominately serve children with autism,” he said. “But what we want to do is move away from pigeonholing the student into a disability.”
Such “pigeonholing” can be psychologically detrimental to kids with autism and their prognoses, Dillon said. But the autism spectrum does include extremely high maintenance disabilities, he added, and the district’s special needs classrooms predominately serve children with autism.
Considering the population occupying the autistic spectrum in the Sierra Vista public school district, the Wilson kids embody a significant percentage of that population, and Dillon reiterated the importance of working with the families with compassion and empathy.
“For them life is even more complicated and we have to understand about that,” he said. “Sadly in our state, as you probably know, the resources we have for education are meager. Other states have double or triple the financing we have for education.”
The program directors of the district’s special education classrooms collaborate regarding policy and curriculum, and comprise a variety of expertise of specialized psychology, he said.
“Those folks consult with each other, and they also provide training throughout the district with the other teachers, so we have a greater understanding of how to best serve children with that disorder,” Dillon said.
On Thursday, five of the special education classroom teachers left for training in Phoenix that is funded through an autism training grant. This is the second year the district has applied for and received the grant, which allows for the training about half dozen times each year.
Dad to leave, mom lectures
On Dec. 2, Lynette’s husband Tod, who applied for and received an appointment as an Army warrant officer in June, will ship off to Korea for two years.
After discussing the future of the family and his career with his wife, the couple decided this two-year time frame works best, he said.
Tod’s career options will be widened somewhat when he returns. And “when the two years is up, our children are progressing such that they will be able to go with us when I get my next assignment,” he said. “We actually have a lot of support here — family. Because both of us are from Tucson, and we have friends in the community, and while I’m gone my unit will be able to help Lynette as well.”
Because the kids are disabled, the family receives federal Supplemental Security Income. Ironically, since SSI is based off the family’s income, the amount of SSI decreases with Tod’s increase in pay, Lynette said. But the increase in her husband’s income is less than the decrease in SSI.
There are disheartening statistics about family situations peripheral to autistic children, in addition to the financial struggles.
The divorce rate for parents with autistic children is about 90 percent, Lynette said. And the incidence of clinical depression among parents of kids with autism is higher than those of terminal cancer patients.
In coping with their situation, the Wilsons have become de facto medical professionals, “among other things,” Lynette said.
About three years ago, she started the Thunder Mountain Autism Spectrum Disorder Support Group, but the group faded out because of the transient nature of its military-based members in the Sierra Vista area.
Lynette gives presentations throughout Southeastern Arizona to promote autism awareness. The Marana Unified School District has asked her to present, and she is involved with Specialized Training of Military Parents, Army Community Services and Catholic Community Services of Southeastern Arizona.
Lynette also spoke to a class last Wednesday at Wayland Baptist University in Sierra Vista. The class had reached the topic of autism in its semester course work, and the faculty understands that Lynette has hands-on expertise.
“It’s basically an education class, and they’re to the chapter on autism,” she said. “It’s exciting to get in and talk to people who are just starting to get into education.”
The trend in educating kids with autism must move toward inclusion of more progressive tools, such as those the Wilsons found so useful at Kris’ Camp, for goals of achieving functional working roles in society for adults with autism, Lynette said.
“If people are willing to think outside the box,” she added. “There are self-esteem issues because these kids are extremely intelligent and know what’s happening around them.”
The idea is to understand them and validate them as individuals.
“There is a function to every behavior that happens. You cannot take what they do and say personally because it’s not an attack at you, especially if they’re highly functional,” Lynette said.
Seth, for example, is afraid to close his eyes at night because he’s afraid he will disappear.
“They’re very literal. You can’t say I’m pulling your leg,” she said.
Education, medication, more
Medications are expensive, and there is no single pill to be taken for autism. The Wilsons are trying to get by without meds right now. Autistic conditions frequently call for anti-aggression medications, for example, but the non-pharmaceutical methods of mitigating the symptoms such as stimulation and joint compression are what the Wilsons try to stick with.
Lynette mentioned a few of her favorite quotes that express her feelings about their children: “Not being able to speak is not the same as not having anything to say” and “label jars, not people.”
In her presentations, Lynette explains that autism is a neurobiological disorder, one of a group of pervasive development disorders along a spectrum of severity, intensity or acuity.
Lynette teaches that there are three basic characteristics of the disease: Impairment of socialization, impairment of communication, and stereotypical autistic behavior such as flapping of arms. When people with autism do that, it is understood that it is an effort to bridge the symptoms of dyskinesia, she said.
With autistic kids, parents must first “figure it out” and come out of denial about it before goals of independence can be pursued for adulthood. Early intervention can correspond with successfulness of treatment.
When the Wilsons’ oldest son was about 18 months old, there was perhaps a little bit of denial, Lynette said, in spite of the fact he was still not talking.
There is no known cause of autism, but two main theories exist, she said.
One is based on evidence that Thimerosal, which is a mercury-based preservative in vaccines for children, is connected to the increase in autism in recent decades, perhaps in combination with consumption of mercury-contaminated fish by pregnant women.
Incidentally, the vaccination schedule for children was changed from three to 21 immunizations in the late 1980s, she said.
The other school of thought is that autism is linked to genetic auto-immune conditions such as fibromyalgia, asthma, arthritis and diabetes.
Lynette said she imagines the roots of autism to be a combination of the two.
“There is no known cause, so there is no known cure,” she added.
On the Net:
Web sites on autism:
• Talkingaboutcuringautism.org
• http://www.nmtsa.org/
• http://kriscamp.org/
• http://www.talkaboutcuringautism.org/index.htm
• http://suedweb.syr.edu/thefci/
• danconference.com
• www.austism.org
HERALD/REVIEW reporter Gentry Braswell can be reached at 515-4680 or by e-mail at gentry.braswell@svherald.com.
umm hello wrote on Oct 29, 2007 11:05 AM: