PDX Parent: Parents of disabled children as 'changemakers'
Three politicians share how their experience raising children with disabilities influenced their decisions in office
“There’s such pain and agony in parenting these kids with personal challenges. I had to make the struggle count for something. It had to matter.” — County Commissioner Sonya Fischer
I have wanted to do this story for a long time — ever since I met these three strong female politicians here in Oregon. State Senator Sara Gelser Blouin, County Commissioner Sonya Fischer and former Representative Julie Parrish all know what it’s like to raise children with extra needs and they used that experience to propel them towards policymaking.
Thank you to PDX Parent magazine for partnering with me to make this story a reality! Read it below and see the great spread in their February issue on their website or in distribution sites around Portland:
By Shasta Kearns Moore
Being a parent changes you. And while many elected officials have the experience of raising children, only a select few know what it’s like to raise children with significant medical issues.
These three Oregon politicians say their experience as mothers of children who require significant medical, educational and social services has had a lasting impact on them — and the policies we all live with in Oregon.
Read on to learn about the intersection of these two identities of state Senator Sara Gelser Blouin, Clackamas County Commissioner Sonya Fischer, and former state Representative Julie Parrish.
Senator Sara Gelser Blouin
The day that now-Senator Sara Gelser Blouin interviewed to join the Corvallis School Board, she was nursing her newborn daughter, had just adopted a second infant daughter and her 6-year-old son, Sam, was in the hospital after a spinal cord surgery that didn’t go well.
“This is what we do,” she says now, 20 years later, of mothers who raise children with extraordinary needs.
Gelser Blouin says her motherhood experiences like these have shaped her policies and the questions she asks of Oregon decision-makers.
Her experience as a social worker, serving families of disabled people, also formed her outlook. “A lot of my job was saying no and I hated it.”
She remembers a family of two physicians who cared for their child with disabilities — until they both ruined their bodies lifting and became disabled themselves. She recalls a woman in her 80s, still caring for her disabled son in his 60s, needing to get in the bathtub with him to bathe.
“It was such a defunct system because the policy really was: ‘We’re not going to help you until you’re in crisis,’” she says. “That is the stupidest public policy I’ve ever heard of.”
In the Oregon legislature, the Democratic senator and former representative has worked to push the needle on these policies. She was instrumental in passing legislation that expanded the eligibility of children for Medicaid’s Home and Community Based Service. She also helped to create extended and modified diplomas for disabled students and several pro-disability accommodations during the COVID-19 pandemic. In 2021, Gelser Blouin spearheaded Senate Bill 567, which reinforced the idea that rationing care on the basis of disability was illegal in Oregon. (The bill became law this summer.)
Her son, Sam, has Koolen-de Vries syndrome, a rare genetic difference that results in intellectual and developmental delay, among other symptoms.
“He really struggled medically when he was younger,” she says. “A cold would be devastating… It made all the COVID things feel very, very personal.”
Gelser Blouin graduated young from college and had her firstborn the day before she turned 21. “His disability was a surprise to us,” she says.
From the beginning, the young mother saw how the advantages she had in time, money and education boosted Sam’s trajectory.
“I think that’s why this issue for me is so important,” she said, recalling the babies she saw without their parents in the neonatal intensive care unit. “That just seemed so wrong to me. That’s not a choice that anyone should have to make, and it’s obviously not good for the child.”
At first, Gelser Blouin didn’t have a diagnosis for Sam. When they eventually got the right one, years later, she says it almost didn’t matter anymore.Gelser Blouin would end up raising four children, two adopted as infants. Including a stepson from her name-changing marriage last summer, Gelser Blouin has five children ranging in age from 12 to 27.
So, how did she have it all? “It is a myth. Nobody does all these things,” Gelser Blouin says, noting that she tried in her first legislative session to meal prep and bake cookies for the kids, but had to pare down. “I just started identifying all the ‘non-negotiables’ — what I can’t miss.”
She also says that as demanding as elected office is, there is enough flexibility in it that she can attend to her children’s needs. Gelser Blouin says she often acts as her son’s direct support professional (an in-home caregiver) when there are no alternatives available.
That hands-on experience has impacted her work — the rules and laws that shape all Oregonians’ lives. In the Oregon Legislature, “I’m pretty regularly raising disability issues,” Gelser Blouin says. “Disability impacts not only disability services and education. It comes up in the workforce and — obviously, we’ve seen in the pandemic — it comes up in health care.”
In the crisis of the pandemic, Gelser Blouin was able to spearhead statewide provisions for disabled people that simply wouldn’t have existed otherwise, like early vaccine options for high-risk people living outside of medical settings, and a law that allowed people with disabilities to have another person with them at the hospital, even under COVID restrictions.
“The entire system isn’t integrated in a way that recognizes the complexity of humans,” she says. “It’s really anybody who doesn’t fit in the box, our systems aren’t designed for.” It hasn’t been easy to juggle. Gelser Blouin spoke of the “toxic stress” affecting her health and the enormous relief she felt when Sam got vaccinated against COVID-19.
But, she says, overall she feels lucky and grateful to be her children’s mother and for everything she’s experienced in raising a child with developmental disabilities. “When he was little, to start to see doors shut in his face that I didn’t know would be shut in the face of anyone really showed me (my privilege),” Gelser Blouin said. “As an elected official, I get a chance to try to adjust those things.”
County Commissioner Sonya Fischer
Clackamas County Commissioner Sonya Fischer says being a mother of a child with significant disabilities has been an asset as a decision-maker. “Having that perspective of fighting and breaking down barriers – those skills and that perspective are needed everywhere,” Fischer says. “I ask why a lot: ‘Why? Why? Why?’ Pretty soon you ‘why’ people into a solution.”
Fischer was just a teenager when her daughter, Christine, was born. She didn’t know that Christine not being able to sit up or crawl at 1 year old meant anything until a fellow college student at Warner Pacific raised alarm bells.
After the initial diagnosis of cerebral palsy, Fischer was undeterred, determined to get Christine the early intervention therapies she needed to live a relatively normal life. But then the girl was diagnosed with seizures and it was then, at age 2, they got a brain scan that showed extensive damage. That was when Fischer’s world fell apart.
“I quit eating. I got down to 97 pounds,” she said. “I couldn’t see how she could have any value. I was so depressed.”
But Christine was still the same delightful little girl she had been before the brain scan, so, one day when her mom was crying, she put her hand on her cheek to wipe away the tears and giggled. Fischer says that moment healed her, almost instantaneously. “I just realized: It’s all about love,” she said. “This whole lifetime, it’s all about love. It’s all relationships. It’s all about giving and receiving love.”
After finishing up her degree in sociology, Fischer got a job in social work at Multnomah County. It was there she learned how to hone her advocacy skills and worked to break down barriers. At the time, Fischer says, Oregon was one of three states that didn’t have an in-home support program for parents.
By the time Christine was 8, that had become a major problem. One wakeful night in a string of sleep deprivation — Christine did not sleep well — Fischer went to the car with a blanket to try to get some sleep, leaving her husband to watch the kids. But the blanket, Fischer soon realized, was soaked in urine from Christine’s incontinence.“That’s when I realized I wasn’t going to make it,” Fischer said. She called her daughter’s case worker and told her she didn’t know what to do but she couldn’t take care of Christine anymore. The crisis opened new doors and Christine moved to a group home.
“Everything was just so wrong with the world when Christine was young,” Fischer says. “This just could not be the way it was for other families.”
So Fischer worked to push for a Medicaid program in Oregon now called Children’s In-Home Intensive Services, which continues to this day, serving the state’s most medically involved children. In between, she raised two other children and went to law school.
“It’s now just normalized that families should have support,” she says, “and that was such a burden 30 years ago.”
It was in the early-2010s, when she was Director of State and Federal Legislative Affairs at the Oregon Department of Human Services, that Fischer realized the power of elected officials to effect change and started to think about running for office.
“Being in the room where it happens — making the decisions — it’s important to have the people with the right experiences in the right rooms,” she says. Fischer says often the suggestions borne out of her experience as a medical mom are welcomed — just not something that other people without that experience think of.
“Christine is a guiding light to me. She inspires me every day as an elected official,” Fischer says.
Since joining the nonpartisan Clackamas County Commission, Fischer has pushed to dramatically speed up the timetable for Clackamas County to have wheelchair-accessible sidewalks, made it easier to build housing for low-income people with disabilities and spearheaded a program that offers in-home mental health services, now called Clackamas Safe+Strong.
Fischer says she was also deeply affected as a young girl by the experience of seeing her brother suffer from dystonia and schizophrenia while in-patient in a mental institution. He later committed suicide there.She adds that being her brother’s sister and her daughter’s mother have also both given her inspiration and motivation for the work.
“There’s such pain and agony in parenting these kids with personal challenges,” she says. “I had to make the struggle count for something. It had to matter.”
Former Representative Julie Parrish
Whether in or out of political office, former Rep. Julie Parrish says she has noticed a comradery among parents of children with health care challenges.
“It doesn’t matter what party you’re in,” she says.
Parrish served from 2010 to 2018 as a Republican representative of the West Linn area in the Oregon Legislature. She is currently in law school and has plans to continue pushing for her signature issue: school choice.
“My experience as a mom and the issues my kids bumped into — and having three with really different needs — really has, over the years, informed my policy choices,” Parrish says. “My three kids were definitely not cookie-cutter children who are all going to process the same and learn the same.”
Parrish started her journey as an advocate when her three boys started school. Her son, Tucker, needed years of vision therapy and, later, had trouble dealing with the deployment of his father and needed counseling and other special accommodations in school. While she notes that her children’s health needs weren’t as time-consuming as they can be for some families, Parrish saw well enough how broken and disjointed the government services were for kids. “Instead of me trying to pull my kids out of school multiple times a week to get the services they need … why can’t we infuse that kind of support through our school system?” she wonders.
Parrish says school issues became the driving force in her decision to run for office. As a member of the legislature, she pushed for vision screenings in public schools, as well as other types of screenings for physical and mental health issues.
Whether on the House Ways and Means Committee or on the House Committee on Human Services and Housing, Parrish says she was usually focused on the needs of kids and on honoring the experience of parents.
“In that window of time from birth to diagnosis to public school, mom and dad haven’t had any window to breathe and to process because they’re just busy advocating for their child,” Parrish says.
Parrish says she also spent a lot of time advocating for families in school affairs because most parents were too exhausted or too scared of retaliation. It was those experiences that led her to feel that parents needed to have more control of education dollars.“Let the parents have more say in how the dollars are spent and let the dollars follow the child,” she says. “They know what’s best for their kid. They’ve been doing this for a long time.”
Her eldest son Max is now 22 and left high school early because ultimately he and his parents decided traditional high school — even with an Individual Education Plan — wasn’t working well for him. He now makes six figures a year as a helicopter mechanic after graduating from Clackamas Community College.
Parrish knows she is one of the lucky ones — she sees parents struggling with bigger challenges and wants them to have more opportunities, too. “Those parents of children with disabilities — really significant disabilities — their biggest question in their mind is: ‘What happens to my kid when I’m gone?’” she says. “There’s a lot of parents out there whose kids need a lot. We budget for that in the legislature, but the dollars aren’t reaching the kids.”
Parrish sees education as the path out of many of the challenges parents face in raising children with extraordinary needs.“To me, school choice was about breaking down these walls and these silos to get kids the support that they need. The only people who have a choice in this state are the ones who can pick up and move districts or write a check for their kids to go to a private school.”
From policies big to small, Parrish says her experience as a mom has “absolutely informed my choices,” and therefore the votes she made and the policies we all live with in Oregon.
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Correction (2/6/22): An earlier version of this story said that Max was a drop-out but in fact he graduated high school a year early. We apologize for the error.
Medical Motherhood’s news round up
Curated snippets of news and opinion from news outlets around the world.
• From Omaha World-Herald: “Nebraska lawmakers back new services for developmentally disabled children”
The measure, introduced by State Sen. Machaela Cavanaugh of Omaha, would make family support services available to as many as 850 children with developmental disabilities. The children are among the more than 3,000 people on the state’s waiting list for developmental disability services.
Family support services could include such things as specialized child care, independent living skills training, respite care and home and vehicle modifications. Children could get up to $10,000 worth of support services annually under the three-year Medicaid waiver called for under the bill.
The waiver also would allow some children to qualify for Medicaid despite their parents’ income. The coverage would make it easier to pay for specialized medical care, such as specialty formulas, co-pays for multiple types of therapy, and wheelchairs and other medical equipment.
• From Disability Scoop: “Debate Over Applied Behavior Analysis At A Crossroads”
The therapy long considered the gold standard for autism faces an increasingly virulent opposition, mostly from people who experienced it in childhood.
Applied behavior analysis, or ABA therapy, involves a range of interventions based on the theory that the environment influences behavior. The therapy can reduce challenging behaviors and improve the quality of life for people with autism through positive reinforcement, advocates say.
But detractors say the goals of the method are to “normalize” people with autism by camouflaging or suppressing their identity and personality to conform to a neurotypical standard.
The debate is coming to a head this month as the Autism Society hosts three town hall meetings in preparation for a position paper on ABA to be released later this year.
• From Insider: “Cannabis Saved My Severely Disabled Child's Life and Mine”
He turned into a completely different child after the surgery. Parenting became an impossible feat. That, paired with his constant pain, made me look for alternative options to help him be the happy boy he once was. That's how cannabis entered our lives and changed them for the better.
…After a year of bad results, I was ready to give up, and so was his grower. There was one more strain he wanted to try, one that was a favorite of his for people with cancer and Huntington's disease. I couldn't tolerate even a drop of it. It was that strong. But we were desperate by then, so I gave J. a hefty dose.
He suddenly seemed happy.
Things started happening at once: He slept at night. He stopped hitting his head. He started smiling again. The pain crease he always had between his eyes smoothed out. His bowel movements improved. Eating stopped being painful, and our new pediatrician charted that he'd grown almost a foot in a year. Seeing the improvements, he merely said, "Keep doing whatever it is that you are doing."
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