Living on the spectrum
Albert Lea Tribune - 9/22/2018
Sept. 22--Support group a network for families living with autism
A place to vent, share, laugh or cry; to celebrate triumphs and to understand setbacks. That is what a group of parents have found with the Albert Lea Area Autism Support Group.
The support group formed about three years ago. Its purpose?
"The support group started out of a desire to have a place parents could connect and support each other, as parenting a child with autism is very different than parenting a neurotypical child," said Stacie Stensrud, an Albert Lea Area Schools special education teacher and facilitator of the family support group.
Stensrud is a teacher at Lakeview Elementary School, where she has led a self-contained classroom for students with autism for about 10 of the 28 years she has been teaching. She has her master's degree in special education with a focus in autism, a degree she pursued after her own child was diagnosed at a young age.
Stensrud said the goal of the support group, which is partnered with The Arc of Freeborn County, is to provide support and information to parents and caregivers of individuals with autism. The group hosts speakers, holds discussions and shares information that pertains to families with individuals with autism. It also has a Facebook group to provide support and information in between meetings, as well as update those who can't make it to the monthly meetings at Brookside Education Center.
Ryon McCamish and Michelle Knudson and Angela Braun and Steve Schaus are two couples who are part of the group. Both couples have two sons on the spectrum, and found out about the support group through fliers coming home from school. While there are some similarities in the ways their sons go about everyday life, there are many variables as well.
'Did we do something wrong?'
For McCamish and Knudson, their two sons being diagnosed with autism came as a complete surprise.
Both Xander, now 6, and Cyrus, now 4, were diagnosed around the age of 3 years old, respectively.
Before Xander was diagnosed after being assessed, Knudson said they noticed he wasn't hitting certain milestones as a toddler, wasn't making much eye contact with others and was behind where most his age were when it came to speaking. With Cyrus, they knew more signs to watch for, and noticed he had more sensory issues.
The initial reaction to when Xander was first diagnosed was difficult, the couple said.
"Did we do something wrong?" McCamish said he wondered. "Who did it come from? Why is it happening?"
Knudson said there was a bit of a grieving process before accepting the diagnosis.
"OK, what now? What next," she said of her eventual resolve. "We know what's going on now. Now what do we do?"
McCamish was a bit more hesitant, as he said he wasn't picking up on some of the warning signs Knudson and teachers saw.
"The word autism is thrown around these days like it's nothing," McCamish said. "Well, it wasn't until I started asking questions, like 'What is it exactly that you're looking for, because I see nothing of what you guys are talking about.' (The teacher) explained it very, very well. She goes, 'For you, you don't see any of the signs because he has a connection to you.'"
For Braun and Schaus, the initial diagnosis for their oldest son was difficult to understand at first, as well.
The couple also has two sons on the spectrum: Tovi, now 13, and Reuben, now 11.
Braun said that around 18 months old, Tovi seemed to plateau in his development. He was an early crawler and had seemed to be on pace with other children to that point. Then he started having difficulty in transitioning to solid foods, was later than most in starting to walk and regressed in his language skills -- while his vocabulary grew, his sentence length started shortening. Teachers in Tovi's classroom also noticed things weren't quite where they should be and recommended the evaluation that led to Tovi's autism diagnosis at the age of 3, as well as a speech delay and gross motor and fine motor issues diagnosis.
"We were completely shocked," Braun said of their initial reaction to their son's diagnosis. "He had been so advanced as a baby, always ahead -- really happy and verbal. It was pretty much a surprise."
"There was no family history," Schaus said.
Reuben was diagnosed at about 2 1/2 years old. His parents also knew to watch for the signs, even more so since Braun said autism is more common for siblings, especially those close in age. The signs displayed for Reuben were his lack of making eye contact with others and his disinterest in interacting with other people all together.
'Both ends of the spectrum'
A common saying in the support group is, "If you've met one person with autism, you've met one person with autism."
The spectrum is so broad and ranges in the ways it can manifest in different people.
"The core areas that are affected in an individual with autism are the same, but how that looks in an individual is unique to each person," Stensrud said.
The differences among those on the spectrum are evident for McCamish and Knudson, as well as for Braun and Schaus with their sons.
"Xander and Cyrus are complete opposites," McCamish said. "Xander is always looking for sensory input, whereas Cyrus is getting too much. So, we literally have both ends of the spectrum."
McCamish and Knudson have to evaluate each situation they put their family in, attempting to foresee what possible issues could arise for their sons.
Xander has issues with transitions, so when the family is looking to play at a park, when it's time to leave they have to start a countdown to give Xander time to adjust to the fact they're leaving. Sometimes, though, it still results in one of the parents carrying him to the car kicking and screaming. It makes it so Knudson doesn't take her sons to parks on her own, and evaluates which ones let her park closer to the actual park equipment. The potential of having to carry a fighting 80-pound child 100 yards makes you notice your surroundings and know what your obstacles are, she said.
McCamish said there are certain places they have to avoid. If they're not going to actually play at the splash pad, they can't drive by it -- even when it's closed. Home Depot or Walmart can't be mentioned in the house without both boys wanting to go. There have been times McCamish has had to "firemen carry" one boy out of a store while leading the other one along with his hand to get out of a situation and get them to de-escalate from a meltdown.
On a recent stay in Rochester, the family looked into going to a bounce house and trampoline place. They knew Xander would probably love it, but weren't sure Cyrus could handle it. Knudson took Cyrus in by himself to check it out. He went into one bounce house for about five minutes, and then told his mom he was "all done" and ready to leave. While she said it was disappointing Xander didn't get to experience it, they strive to find activities both boys will enjoy.
"We knew we couldn't torture one to make the other happy," Knudson said.
"Unfortunately, we've missed out on some fun things that the boys would enjoy."
It comes down to whether Knudson and McCamish think both boys can handle the environment, if they'll have an issue and if their parents have the energy to help them handle it. Certain events are skipped. Others are attempted with success, while some are attempted and don't work out. McCamish said they tried taking the boys to a fair in Austin, where Xander wanted to go on a ride McCamish knew he wouldn't be able to handle. It resulted in McCamish having to take Xander to the car with him fighting the whole way, with 100 to 150 people staring at them as they made the nearly 10-block walk to their car.
McCamish knows there are people who assume their children are "spoiled brats," and mistake their sons' meltdowns for tantrums.
"Meltdowns are much different compared to tantrums," he said. "A meltdown occurs when your child cannot regulate their emotions at that time and they don't know what's going on.
"(Xander has looked) at me with this blank stare of, 'Dad, help me. I don't know what I'm doing.' It is the most heartbreaking thing any parent could ever see, a child that does not understand, cannot control what is happening."
The couple has gotten dirty looks and some snide comments when their sons have had meltdowns in public. To McCamish and Knudson, though, their first priority is their children.
"We do take other people's considerations into account, but at the end of the day, I have to take care of my kid," McCamish said.
"In order for the kids to be able to understand how to act in public, they have to be out in public," Knudson said.
She said she hopes more people learn not to judge, especially when they don't know the entire situation.
"I don't know how many times I've heard 'You just need to spank them more,'" she said. "No, I'm not going to -- you can't spank the autism out of a child. It's not ever going to happen."
Differences in children on the spectrum manifest for Tovi and Reuben, as well.
Tovi is extremely social and will talk to anyone. He does have some issues with understanding the natural give and take of a conversation; he tends to interrupt or talk over people. While he'll socialize with other children, Braun said her son prefers talking to adults.
"Everybody's a potential friend to him," she said.
This has a drawback, though, as Braun said it makes Tovi vulnerable -- he has no concept of "stranger danger."
Reuben, on the other hand, is more like what people probably assume with autism, she said. While sociable with children his own age as well as adults, Reuben is more introverted. He can get overwhelmed and exhausted by too much social time.
Both sons love to read -- Reuben is more of a nonfiction reader, while Tovi is into anything fantastical or comprised of science-fiction.
Tovi has sensory processing disorder, meaning he can become either over- or under-stimulated more easily. He's more sensitive to temperatures, and can't eat certain foods or even watch others eat certain foods due to their texture. When he's under-stimulated, he either swings or rocks in a rocking chair. To sleep at night, he wears a sleep mask, and sleeps in both a "mummy" sleeping bag and inside of a tent on his bed. Braun said this helps deprive her son of sensory input -- like sleeping in a cocoon -- so that he can sleep at night. Tovi also has a registered emotional support animal: a dog named Harvey. Harvey helps Tovi around the house and on long trips to the Cities for doctor's appointments. Tovi can sit and pet Harvey, who helps him deregulate when he becomes overstimulated or overly upset. How? Because Harvey's an "unconditional, all-accepting being," Braun said.
Reuben is interested in areas such as ancient cultures and anything having to do with nature. He loves being outside, and consistently brings his parents sticks, leaves, rocks or other items he notices during his adventures. He loves music, but has to wear noise-reducing headphones so the volume doesn't overload his senses. Tovi likes being outside as well, but can be more sensitive to the temperature or other aspects. Tovi also likes music -- Braun said he has a beautiful singing voice and has experimented with different instruments. He also enjoys learning to cook different foods and reading recipes.
Both boys are extremely intelligent, ahead of their peers in reading level and very academic.
While her sons' interests vary as well as overlap, Braun said there are no descriptors or labels that should automatically coincide with an autism diagnosis.
"There is no typical autistic person. That's why it's a spectrum, it's so broad," she said. "They're so individual. Their challenges are unique, their gifts are unique."
'Happy, fulfilling lives'
While Xander and Cyrus are considered non-verbal by the medical community, McCamish and Knudson consider their sons to be low-verbal. Their sons also have echolalia, where they repeat back words said to them by someone else. It can make life difficult, especially when illness or injury come into play. Asking one child if they're hurt can get a simple "Hurt" in response.
While communication can be a struggle, there are strides being made. The boys are starting to learn that while they may not be able to verbalize to others what they want, they can show them.
"'Autism is a beautiful language that we all should understand,'" McCamish said a friend told him. "And it's true, it really is. When you see the innocence of someone who is on the spectrum, even a kid ... It really is its own language."
The group has an end-of-the-school-year picnic each spring, where children of the parents involved have the opportunity to play together. McCamish and Knudson said seeing their sons interact with other children with autism has been enlightening.
"It's really cool to see this subset of kids with their own little world and they all understand it," McCamish said.
For Tovi and Reuben, Braun said the ideal is for her sons to be able to one day be independent, but that the family has to take it one day at a time.
"I don't think any parent can know 100 percent -- especially when you've got kids who have both the gifts and the barriers -- how much they're going to need," she said. "Every year we know them a little bit better."
Braun said their children have taught her and her husband to "be grateful for today," not to always look toward tomorrow.
"How resilient they can be amazes me. They work really hard just to function and to get through what they need to get through in their school day and managing their emotions," she said. "They're exhausted from it at the end of the day and they just don't give up. They're tenacious and I really admire that about them."
While Tovi will likely need some kind of guardian throughout his life, Braun has said he has expressed an interest is pursuing a career as a computer coder.
"You know, if I have to go with him to his classes every day at community college or college to help and be his para, and go sit there through every class, then that's what I'm going to do," she said. "I want them to do what they're capable of doing and what they want to do, as much as it's in my power to do so.
"What we wish for them is just happy, fulfilling lives -- regardless of how independent they can be."
If interested in joining:
What: Albert Lea Area Autism Support Group
When: once a month during the school year
Where: Brookside Education Center
More info.: no registration is required. Contact Stacie Stensrud at email@example.com or 507-379-5047 for more information or to be placed on the email list.
Want to help?
The Albert Lea Area Autism Support Group is starting to fundraise for speaker fees, family events, autism awareness and resources for families. Anyone interested in donating can send donations to Albert Lea Area Autism Support Group, ARC of Freeborn County, 407 E. Main St, Albert Lea, MN 56007. The group is a nonprofit through The ARC, so any donations are tax-deductible.
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