After 24 hours of hard and fruitless labor, Jessica Fitzpatrick’s husband drove her down winding mountain roads to the hospital in Hamilton, where she gave birth to a baby girl via an emergency cesarean section. Other than not having the home-birth they planned, and some fussiness from what Jessica thought was a “cranky stomach,” life with baby Sequoia was like that of most first-time parents: exhausting, exhilarating, joyful and sleep deprived.
A year passed. Jessica became concerned with Sequoia’s inability to stand and walk like other toddlers her age. The family naturopath assured Jessica that all children develop differently. Jessica wanted to believe him, but she knew something was wrong.
At Sequoia’s 18-month checkup, the doctor suggested she might have autism. Jessica couldn’t accept it.
“I just couldn’t hear it,” she said. “I refused to hear it.”
At 21 months, the doctor said Sequoia had not reached her developmental milestones and recommended both physical and occupational therapy. A month later a physical therapist realized Sequoia wasn’t processing sensory input correctly.
“I remember driving home and calling my mom and crying because I felt they were making stuff up — that’s what it felt like to me,” Jessica said. “Then I started reading about Sensory Processing Disorder. Wow, they hit the nail on the head. It was a whole rabbit hole into autism.”
An estimated one in 5,000 children in the U.S. were diagnosed with Autism Spectrum Disorder in 1975. Today, autism impacts one in 68 children in the U.S., according to the Centers for Disease Control and Prevention. Approximately 50,000 children with autism become adults each year. According to the Montana Autism Center, this data suggests there are more than 3,000 Montana children with autism.
Jessica drove Sequoia down the mountain roads to Hamilton three times a week to attend therapy for Sensory Processing Disorder and developmental delay. When Sequoia turned 3, she was given an official diagnosis of Autism Spectrum Disorder.
Facing an inescapable truth, Jessica found comfort in knowing that Sequoia had already been receiving speech, occupational and physical therapy — the foundational treatment available for autism.
Jessica and her family left their cabin in the woods and moved to Hamilton to accommodate what had become a complicated life.
Many think the autism spectrum is linear, giving the misleading impression some people are more autistic than others. According to Autism Speaks, an autism advocacy group, the term “spectrum” reflects a wide variation in challenges and strengths in several developmental areas: motor skills, language, sensory, perception, and executive function.
“Every single thing Sequoia does is a challenge,” Jessica said. “Her hands don’t work right so she can’t tie her shoes or button her pants. Half the time she can’t even get her pants pulled up.”
With heightened senses, the aroma of certain foods cause nausea and vomiting, and lights and fans can cause her to stare obsessively. Because of the inefficient processing of sensory messages, Sequoia struggles with behavioral issues and is out of sync with societal norms. She spends a lot of time alone, even though she enjoys going out.
Sequoia can speak, but she’s difficult to understand and often repeats the same phrase. At age 3, she developed a love of letters and finger spelling, and because her brain worked quickly she began to use sign language to spell everything in sight. Jessica and Sequoia taught finger spelling to the other special needs children in kindergarten and first grade. Sequoia was now able to connect and communicate with her peers.
Today Sequoia signs the names of the people and things she sees. The words “What’s your name?” continuously spill from Sequoia’s lips as she finger-spells the names of objects and people she flutters past like a butterfly.
At 13, Sequoia is experiencing the trials of typical teenage girls. She handles fluctuating hormones, even though her frustration with verbal expression comes out sideways with behavior and tears. Like most teenage girls, she has crushes on boys and spends more time in her room than her mother likes. If she could, Sequoia would be on her iPad 24/7 surfing YouTube videos, listening to music and looking at photographs.
But in other ways she’s not quite the typical teen. Sequoia still enjoys her baby dolls, Sesame Street characters, and stone collection.
She goes to school three days a week, three hours a day. The one academic activity she enjoys is typing and spelling, which Jessica hopes can be used to create a functional form of communication for her future.
Some families find it difficult to get out, so children with autism often become closed-in and isolated. Jessica and Sequoia's father have consistently taken her with them on outings.
“Sequoia is always go, go, go,” Jessica said, and always wears a big smile.
Wherever they go Sequoia wants to know everyone’s name. The conversation doesn’t get much further than that, but they walk out of each restaurant and grocery store having met every person inside.
Chivahna Keating is one of Sequoia’s one-on-one aides. Only a few years older than Sequoia, she also is a friend and peer. Each week they socialize in the community and work on goals of independence: showering, dressing, brushing teeth and hair.
That gives Jessica some necessary time for herself.
Jessica said that like many parents of children with autism, she and Sequoia’s father differ philosophically about the details of Sequoia’s care. Because of the way individuals cope and adapt to the reality of living with autism, it's not an easy situation for anyone.
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Jessica and Sequoia now live in their own apartment with walls covered in inspirational artwork and Sequoia’s finger paintings. Jessica is the primary caregiver and said that despite the challenges, there is a great deal of love in their family. Sequoia adores her father and lights up when they spend time together.
During public outings, Jessica mediates, corrects and encourages Sequoia.
“It is tedious and exhausting,” Jessica said. “After 13 years of sleep deprivation, I am not on my game. I wake up exhausted and sometimes my head is pounding, but I have to get up and do it all over again. Some days I feel inspired and invigorated. Other days I’m like, ‘Are you kidding me? Another day? How am I going to get through this?’”
Jessica said she often finds herself isolated and secluded, believing she is doing what any mother would do for her child. Unfailingly, as exhaustion drags at her heels, Jessica takes Sequoia swimming, walking, playing in the park, riding her 3-wheeled bike, shopping, and out to eat — activities Sequoia can feel successful doing, and that give her purpose.
“Jessica never stops seeking answers and opportunities that allow Sequoia to thrive,” said Megan Purvis, who befriended Jessica when she was an excited new mother. “She has always carried the entire burden as if she were a single parent.”
Yoga is Jessica’s therapy. Her poise and presence are a testimony to her practice, as are the purple and green yoga blocks, bolsters and mats gracing the yoga room. Jessica also loves to be outside, treasuring her time hiking in the woods where she finds healing, transformation and rejuvenation.
With hope as a constant companion, Jessica perseveres.
In 2007, after Sequoia’s autism diagnosis, Jessica applied for a program that provides medical services, therapies, and specialized equipment for those with disabilities and lifelong needs. Jessica applied every year for seven years. Finally, in 2013, a space opened, providing Sequoia with intensive services.
Understanding the limited statewide funding, a state worker told Jessica she had “won the lottery.”
The Child Development Center in Missoula provides services to 48 children in the Bitterroot who have developmental disabilities, including autism, and 440 children total in their service area, said Jamie Wolf, a spokesperson. In the seven counties the CDC serves, more than 1,000 people, including 230 youth, are waiting for help that never seems to come.
Jessica said she felt as if Sequoia’s award of lifelong services was God’s way of saying, “Here, you get this for your child because you are willing to go out on a limb for these other children.” The year before, Jessica started a non-profit to raise money for services for Sequoia and other special needs children in the Bitterroot Valley.
Jessica, who studied therapeutics and recreation, opened a center for special needs children and their families in Corvallis. Bitterroot Arts for Autism started as a sensory room — a therapeutic environment where special needs children can integrate and find balance and coordination. It is a space where children feel comfortable, fully accepted and encouraged to be authentic.
The sensory room evolved into Heartism Community Center, where families with special needs children come together for potlucks, movie nights and drumming circles. About 20 local families benefit from the connection and sense of community.
Pamela Thomas’ 12-year-old daughter Trinity attends the center’s summer camps and events. Pamela appreciates the community center because it provides Trinity with a caring and accepting environment where she learns new skills.
“I think more families could use this wonderful resource,” Thomas said. “It's a great way to connect with people and parents who are going through the same trials.”
Last spring, volunteers built a community garden for the children and helped Jessica organize 11 weeks of summer camps. The center hosted summer camps for two summers with one $5,000 grant.
Fundraising for the community center is never-ending. It has yet to receive any large grants or substantial private donations. It takes $1,000 a month to keep the doors open — bare bones with no programming and volunteers only.
As the center draws close to running out of funds, Jessica persists. She said caring for Sequoia and running the center is all she can do.
Looking around the center’s commercial kitchen, Jessica dreams of providing one-on-one instruction for the children to learn life skills at their own level and their own pace. She is thinking of ways these children might be employed as they transition into adulthood.
A local organic farm has been hosting summer camps for the kids from the center. Jessica said they hope to one day provide employment on the farm, and perhaps a place to live. Sequoia and others like her will need assistance for the rest of their lives.
Sequoia has reshaped Jessica’s identity and her reason for living.
“If not for Sequoia, I probably would have remained selfish — traveling around and exploring, enjoying life,” Jessica said. “Sequoia makes me a better person. She helps me to appreciate the simple things in life.”