Why Not Just Take a Break?
Plus: Celebrated SC school for disabled kids looks to expand; Congress approves $2 billion for autism; DOJ finds Oklahoma provides jail time instead of services to mentally ill
Just relax! Why you so stressed all the time? How many times have we been told to 'practice self-care,' only to feel like it's an impossible dream? For parents of disabled kids, our time and energy are often consumed by caregiving, advocating, and navigating systems that don’t center our needs. This is the reality many of us live every day—the constant interruptions, the relentless demands, the guilt of putting ourselves first.
Self-care is important, yes—but it’s not always as simple as lighting a candle or taking a bubble bath. Sometimes, it’s about pushing for community care and policy changes — whatever fuels us. I especially love the fact that the mom character is working on drawing a cartoon in the second panel. Very meta! What are ways you care for yourself and what are the ways you get interrupted from that care?
On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From The Post and Courier (South Carolina): “Meyer Center for disabled kids plans to grow. See what makes this SC school unique.”
Most new parents walking into the Meyer Center still are grappling with the life-altering reality that they are raising a child with a disability, mother Allison Huffstutler said. The school provides the early, continuous therapies that disabled children need for more independence as they grow up.
"With it being so small and intimate, there's such a ... like a family, like a community there that really support you while you're adjusting to a new life you didn't expect," Huffstutler said.
The Meyer Center for Special Children has been a cornerstone of the Upstate disabilities community since 1954, first taking on educational and therapy needs of disabled children two decades before federal law compelled public schools to do it.
[…]Fundraising for the school's new building will start once a site in Greenville for the future home is secured, and the timeline for moving all of the school's programs to a new campus is roughly three years out, Hendricks said. Architectural plans feature 12 classrooms each equipped with quiet "sensory" rooms, offices and bathrooms. At the structure's core — and designed to be open to the public after school hours — are a nurse's office and gyms committed to physical, speech and occupational therapy.
The Meyer Center is beloved in Greenville — drawing 40 percent of its budget from donations to supplement the $6 million cost of teaching 118 kids.
Aside from babies and toddlers in the school's daycare, students at this public charter school do not pay tuition. Keeping the lights on and paying 76 employees costs about $40,000 per student — about twice what local public schools spend per student in special education. […]
• From Disability Scoop: “Congress Authorizes Nearly $2 Billion For Autism”
With no time to spare, federal lawmakers approved a renewal of the nation’s primary autism law, paving with the way for over $1.95 billion in spending to address the developmental disability in the coming years.
President Joe Biden signed a five-year extension of the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act late last month. The move came days after the measure, which originated in 2006, expired.
The law allocates federal funding for research, prevalence tracking, screening, professional training and other government activities related to autism.
[…]The renewal, which garnered overwhelming bipartisan support, ensures that a myriad of federal autism activities will continue while also adding some new priorities. Specifically, the law directs the National Institutes of Health to back research that reflects the full range of people on the autism spectrum including those with co-occurring conditions and various needs for support and it adds an emphasis on studying autism and aging. The number of NIH Centers of Excellence will increase and the agency will be required to produce an annual budget plan for autism research for the first time.
In addition, the law includes efforts to promote the adoption of assistive communication and it calls for a government report looking at how to grow the number of developmental behavioral pediatricians as well as an update to a report focused on youth aging out of school.[…]
• From the Associated Press: “DOJ finds Oklahoma City police discriminate against people with behavioral disabilities”
Oklahoma City and its police department have discriminated against people with behavioral health disabilities, the U.S. Department of Justice said Friday after releasing the latest in a series of investigations into state and local law enforcement agencies.
In its 45-page report, the DOJ found the city unnecessarily institutionalizes adults with mental illness and that the police department often escalates crisis situations by responding with armed officers instead of with behavioral health professionals.
“As a result, urgent mental health needs often go unaddressed and crisis situations are needlessly escalated, sometimes leading to avoidable use of force,” Assistant Attorney General Kristen Clarke of the DOJ’s Civil Rights Division said in a statement.
[…]In separate statements, Oklahoma Attorney General Gentner Drummond and Gov. Kevin Stitt acknowledged the need for improvements to the state’s mental health system but were critical of the DOJ under President Joe Biden for what they characterized as federal overreach.
“We will closely review the findings, but the DOJ report appears to be an attempt to bully Oklahoma into compliance with ever-changing and undefined targets,” Drummond said.
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My self-care is trying to SCHEDULE AND ATTEND MY OWN DOCTOR'S APPOINTMENTS, AS WELL AS SCHEDULE AND MAKE LABS AND WELLNESS PROCEDURES. This gets interrupted when I don't have a home health nurse to care for my daughter. Some of her shifts are uncovered due to the nursing shortage, sometimes there's no one to cover the shifts when a nurse has planned time off, and other times there are no back up nurses to cover when someone calls out sick or calls out for an emergency.