Kalispell mother advocates for disabled children

Becky Notch started fighting for her son almost six years ago, but as Montana’s 2018 Mother of the Year, she will now take that fight to the capitol on behalf of disabled children across the state.

Notch’s youngest son, Luka, was 2 years old when he was diagnosed with non-verbal autism.

Recognizing that her son was not developing language, Notch took him to the Child Development Center for testing.

A brief observation by one of the center’s specialists led to more in-depth screening, which confirmed her child’s disability.

“It was terrifying,” said Notch. “I think for any family when you find out a diagnosis like that your world just kind of starts spinning. You don’t even know which way to turn.”

Notch, of Kalispell, said she took a day to allow herself to mourn the person her child would not have the opportunity to become but then shifted into research mode to see what came next and what could be done for her son.

The Child Development Center worked with her in the early stages, offering tips and advice, helping her establish a way to communicate with a child without language and assigning psychiatrists, therapists and caseworkers to provide individualized assistance.

While learning to cope with her family’s new normal, she discovered that while her insurance would cover Luka’s speech and occupational therapy, it would not cover applied behavioral analysis, the most affective treatment for autism.

However, after years of applying, Luka got a coveted slot in the Children’s Autism Waiver, a Montana Medicaid program that covered the treatment providers claimed would produce incredible improvements.

Notch said she was skeptical of those claims as she watched her son struggle to communicate and collapse into meltdowns at the drop of a hat.

Her entire life — from her work schedule to trips to the store — revolved around her son’s needs, but she said as a mother, she couldn’t give up.

Within the first year of participating in the program, Notch said she began to see significant improvements in Luka’s verbal communication and ability to follow instructions.

Now in his last year of the program, 7-year-old Luka thrives as a mainstream first grader with minimal extra attention in subjects like math and reading.

The once silent boy is now communicating in full conversations, making friends and socializing in ways he never could before.

“Today, it’s been a long road,” Notch said. “It seems like it was just yesterday that he was diagnosed, but it also feels like we’ve been in this for 20 years.”

IN 2016, however, word began to spread that the state programs making those changes possible for Luka might lose their funding.

That’s when Notch remembered the story of Sabrina Wisher, a friend and fellow mother of a disabled child who had advocated for her own child.

Notch reached out to Wisher and started asking questions about how she too could become a successful advocate for Luka.

Intimidated but determined, she traveled to Helena for the first time that year to speak with legislators on behalf of her son.

When the reality of extreme state budget cuts began to surface in 2017, she returned to Helena again, this time armed with a stack of pleading letters gathered from other parents, therapists, teachers and community members at a rally she had put together to raise awareness for Luka and children like him across the state.

Wisher, who serves as the search chair for the national board of the American Mothers Convention and won Mother of the Year in 2014, said it was Notch’s determination and fire for the cause that prompted her to nominate Notch for this year’s honor.

The fight that had begun with Notch’s son had expanded into a fight for disabled children across Montana who faced an uncertain future.

The $93 million state budget cuts imposed across all state programs at the end of 2017 hit the Department of Public Health and Human Services hard, and three days before Christmas, Notch and thousands of other mothers received news that programs crucial to their children’s future success were gone.

“Everything was shut down, everything was eliminated. Family support services and early childhood education services…none of that is there anymore. That does not exist anymore,” Notch said.

Children like Luka would no longer benefit from the opportunities provided by the programs that had given him the chance at an independent future, and Notch said she could not stand by and let it happen.

“It stops just being about your family and about your child…Everybody is fighting for these kids,” Notch said.

Notch said the loss of those services lit a fire in her as she thought of the families who would never get the help they needed.

ON FEB. 19, Notch was notified that she had been named Montana’s Mother of the Year.

“This is crazy. I have done nothing out of the ordinary to deserve this,” she said of the honor. “It still just leaves me in awe because I’ve met so many amazing families who are doing the exact same thing.”

Notch said she considers herself lucky and blessed, not only to have received the services that have changed Luka’s life, but to be chosen by God to be his mother.

“My child, he has received that strong foundation. He’s going to be okay. I am 100 percent confident in that,” Notch said. “And I’m also 100 percent confident that if he hadn’t received those services, he would be nowhere near who he is today. And he would not have those strong skills that he has right now to continue having a stronger and stronger and stronger future.”

As Montana’s Mother of the Year, Notch said she hopes to use the platform and the voice to stand up for the cause of children and families struggling with disabilities who will not benefit from the programs cut by the state.

She and the other 49 Mothers of the Year will travel to Washington D.C. in April for the American Mothers Convention where she will spend three days developing stronger advocacy skills and connecting with representatives on Capitol Hill to see what can be done to fix the problems facing Montana’s children.

Notch said she intends to request letters of explanation from Gov. Steve Bullock and Department of Public Health and Human Services Director Sheila Hogan outlining how and why the services were cut to take with her to the capitol.

“A family should not receive a big diagnosis of their child with a disability and have nowhere to turn. That never should have happened. It’s not fair,” Notch said.

From the perspective of a mother, she said she can’t and won’t stop fighting for her child and those like him.

She extended encouragement to other families facing similar situations, advising them to breathe, align themselves with other families going through the same thing, ask lots of questions and contact their state and local legislators.

Reporter Mary Cloud Taylor can be reached at 758-4459 or mtaylor@dailyinterlake.com.