Parents work to conquer Asd through advocacy, education
ISHPEMING — Like most parents, Ishpeming residents Jeff and Lora Kinnunen send their 6-year-old son Lachlan and 11-year-old daughter Athena off to school each day on the bus, but the routine is especially important to Lachlan, Lora Kinnunen said, because he has Autism Spectrum Disorder.
During Autism Awareness month, it is fitting to recognize the impact ASD has on society and, perhaps, more importantly the people who navigate the world with some form of it, which according to the Michigan Autism Program is one in every 68 children.
ASD refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences, according to the Autism Speaks webpage.
Lachlan is social, unlike many people on the autism spectrum, Lora Kinnunen said, but does not use verbal language to communicate.
The Lakeview Elementary School kindergartener knows about 300 signs, thanks in large part to his parents continually proactive approach to his situation.
In fact, the Kinnunens noticed the differences in Lachlan from the time he was a few months old, but they had to work hard to get an expert diagnosis.
“You know when you’ve had one child, you notice delays. If he was my first, I might have said stuff like my grandma would say like, ‘He’s a late bloomer,'” Kinnunen said. “When he was 1 year old, his language was off the charts, but he couldn’t walk. And then he started walking, but not until he was 14 months, and he lost all of his language. He still doesn’t have all of it back.”
Kinnunen said despite being told that these types of delays might be normal, she and her husband persisted because they sensed a serious developmental problem.
“He started crawling at 14 months, he was almost 2 when he started to walk. That’s why it was so staggering. We were beside ourselves,” Kinnunen said. “We were like, ‘we know that something is not right,’ and we really wanted to work on solutions, because we are very proactive people.”
Children are typically not diagnosed with ASD before they reach the age of 4 years, but Lachlan was 18 months old when specialists told the Kinnunens that they strongly suspected he had the disorder.
When the diagnosis finally came, Kinnunen said she and her husband let didn’t let their grief immobilize them.
“It’s sad — when (we got) that diagnosis, we cried. What does this mean for us? How are we going to help him have a full life,” Kinnunen said. “That was when my research began.”
Almost immediately after the ASD diagnosis, Lachlan was prescribed language, speech therapy, occupational and behavioral therapies.
Kinnunen said these solutions, while they provided some relief, created yet another problem for the family.
“The fun thing about insurance is that autism wasn’t a thing then — it was too vague. So we kind of went into shock paying for medical bills for him,” Kinnunen said. “It breaks the bank.”
Kinnunen said the cost couldn’t deter the couple from searching for and pursuing the best solutions for her son.
“We don’t want to (look back) when he’s 20 and say ‘would have, could have, should have,’ where would he be,” Kinnunen said. “We are putting every egg we possibly can in that basket because then — wherever he gets — we know he has reached his potential and there is nothing else as parents we could have given him.”
Kinnunen said her family’s journey was made easier with the help of several organizations, including the Marquette Alger Regional Educational Service Agency, or MARESA.
Barbara Potts, an educational and autism consultant at MARESA, said school districts in Marquette and Alger counties have identified 110 students, who like Lachlan have “primary eligibility of autism spectrum disorder.”
“MARESA provides services for individuals on the Autism Spectrum from ages 1 and a half to 26,” Potts said.
MARESA offers multiple services for eligible individuals with ASD.
— speech and language therapy to help in language development, social connection and more flexible thinking.
— occupational therapy to address fine motor and sensory challenges.
— physical therapy to assist with gross motor skills and core strength.
— autism consultation services, which may address a broad range of concerns such as behavioral concerns, academic supports, assistance in peer-to-peer relations, self-awareness and assistance in the Individualized Education Proces, or IEP.
Potts said each person on the autism spectrum will experience different and varying tendencies associated with ASD, and several aspects of the experience are unfortunately common.
“I think families often struggle with the day-to-day challenges that children and adults with autism spectrum disorder demonstrate, such as the need for a routine with little variance, certain behavioral tendencies that are difficult for the general public to understand,” Potts said, “And the literal interpretation of our language that may lead to some misunderstandings.”
Kinnunen said MARESA also provided what her family calls a “talker” for Lachlan.
The tablet-like device uses the The Pragmatic Organization Dynamic Display, or PODD system, which is both a method and tool for developing and utilizing augmented language input, according to the Autism Consortium website.
Lachlan uses the PODD to communicate by pressing buttons, Kinnunen said, and the device forms audible sentences or questions for him.
“We call it a talker, because it talks for him,” Kinnunen said. “It’s amazing, and it’s his. We have it all summer. We can take it home every night, we use it on weekends. He does use it really well.”
Lachlan also receives four hours of Applied Behavioral Analysis or ABA therapy per week from Pathways, which is paid for via Medicaid.
Pathways CEO Mary Swift said early intervention, especially at a young age, is essential to help a person reach full potential.
“We’ve seen incredible progress with youth who have received services through the autism benefit,” Swift said.
Swift said one of the biggest challenges families of individuals with ASD face is getting access to services outside of the school setting.
“It’s difficult, particularly if a person has private insurance,” Swift said. “In the U.P. there are limited providers of services outside of the public mental health system that are able to provide the ABA programming and other behavioral interventions.”
Kinnunen said the behavioral therapy through Pathways is an important piece of the puzzle for Lachlan, because they pick up where school and the home setting leave off, working on several skills some of us may take for granted.
“He knows his numbers, he knows his colors, he knows his letters, his animals, his shapes,” she said. “You name it. He knew all that going into kindergarten and a lot of that has to do with Pathways working with him.”
The organization also works to cultivate behavioral as well as developmental skills in Lachlan.
“Pathways is awesome at helping him learn how to wait, for example,” Kinnunen said. “Going to the park and learning how to wait your turn to go down the slide doesn’t seem like a big deal. But when you have a kid that is willing to beat his head off the steel slide because he doesn’t want to wait, it’s a huge deal. That was after they taught him how to climb the slide, because climbing is kind of tricky, too.”
She said one of the most concerning things about the political climate today and the revamping of health care is the prospect of Lachlan losing his social security disability insurance.
“There are so many aspects of being a parent of a special needs child. But insurance and government policy wind up being a big one because taking out those requirements for those children in the public school systems, that’s going to take that whole resource away from Lachlan if that happens,” Kinnunen said.
Lachlan also attends Willow Farms Horse Therapy, Kinnunen said, which is where he developed a love of animals.
Kinnunen also credits Lachlan’s teachers at Lakeview School, and his pediatrician with giving him the support he needs.
“The kindergarten teacher has been so welcoming to him, incorporating his learning into the learning for the rest of the class,” Kinnunen said.
Additional support provided for Lachlan includes an ankle monitor from the Alzheimers Association, because, like others with ASD, he tends to wander.
“If you don’t have autism in your life, you don’t understand it,” Kinnunen said.
Kinnunen said she tries to educate people who don’t understand her son when he exhibits behavior in public that is not considered “normal.”
“There’s a lot of people that say things to me in line, like when he is having a hard time waiting and he is screeching,” Kinnunen said. “I hear a lot of ‘I’d beat my kid if’ — or ‘bad parenting,’ or ‘I can’t believe they are just letting them screech like that.’ And I frequently take the opportunity to say, ‘I am sorry he has autism, he has a hard time waiting in line,'” Kinnunen said.
Lachlan does not understand the looks and comments that he gets in a public setting, but Kinnunen said that doesn’t mean he won’t at some point.
“It makes me mad because I worry someday he’s going to understand it,” Kinnunen said. “It’s hard because people have no problem criticizing.”
Kinnunen said the treatment she and her son get at some stores has made her avoid shopping a those locations, while there are some places where her son is made to feel welcome and included. Target in Marquette Township is one of these places.
“We walk in there, everybody knows us. They actually all know Lachlan,” she said. “They asked Lachlan if they wanted to work with their maintenance man between Christmas and New Years,” Kinnunen said.
The effort was spearheaded by Target’s head of maintenance Chad Simon, Kinnunen said.
“He got to go work with them for two hours. They got him actual Target name tags,” she said. “He got to go to a team meeting, and he got to go and have snack in the break room, and he got do all of it. It was amazing. It was the best day of his life.”
In a good place, for now
Kinnunen said she has been asked to blog about living with a child with ASD. She has also been asked by Pathways to be a parent advocate, but so far she has declined.
“I keep saying, you know, when I don’t feel like I am treading water anymore,” Kinnunen said. “It’s not like we’ve won autism — I have mastered every aspect of it. You know, he is 6, I have a lot more struggles ahead of me, and I know this. Right now we are in a great place, we are not bailing water out of the boat at the moment.”
Kinnunen said she is hopeful that Lachlan will one day function in society, and at what he loves best — fixing things.
“Of course I have high hopes that Lachlan would be able to work in a school as a janitor because he loves kids,” she said. “He would be in his glory for the rest of his life if he was able to do something like that. I am reasonably confident that he is going to be able to have a job and do something. He is so outgoing.”
Kinnunen said whatever happens she and her husband, like so many parents of children with ASD, will continue to advocate for Lachlan.
“We try to do as much as we can to try to give him everything,” Kinnunen said. “You know, from the get-go he has just been a little different. But he is amazing.”
Anyone seeking information on local services provided for those with ASD can visit the Autism Society of Michigan website, www.autism-mi.org/local-resources, or the Autism Speaks website, www.autismspeaks.org for local agency contact information.
Lisa Bowers can be reached at 906-228-2500, ext. 242. Her email address is firstname.lastname@example.org.