Guiding Exceptional Parents

06/18/2026

What is it like to be the sibling of a disabled person with incredibly high support needs?

This episode of Esther Perel's podcast can help you understand. I sent it to a friend, and she wrote, "THANK YOU for sharing this!!! I’ve never understood my daughter more. It’s such a gift."

Watch here:

On this week's episode of Where Should We Begin? with Esther Perel:...

06/13/2026

Well - despite my skepticism re: Kennedy's IACC, I am actually really glad to read this!

I really agree about “problems with praxis” not reflecting intellectual ability. People (clinicians and the rest of us) often conflate co-occurring challenges (like problems with praxis) with intellectual ability which is so unfair (not to mention inaccurate.)

Read here: https://childrenshealthdefense.org/defender/profound-autism-new-definition-iacc-better-care-research/

A federal advisory committee last week recommended adopting the term “profound autism” to refer to a subset of people with autism who require the greatest degree of support in their day-to-day lives — but whose cognitive abilities are not limited. “Not all non-speaking people with high suppo...

06/08/2026

This is a big deal for families of kids with disabilities.

Kudos to Eric Goll for shining a light on the emotional load caregivers must shoulder.

Learn more here: https://www.empoweringability.org/invisible-mental-load-of-caregiving/

Learn more about the invisible mental load caregivers feel and how to move from Sole Manager to Navigator for your loved one with a disability.

06/05/2026

This year’s Annual Autistic Self-Advocates Panel by xMinds Partnership for Extraordinary Minds is this Tuesday, June 9th.

It's focused on masking, self-regulation, burnout, and the supports that help autistic people thrive authentically.

Autistic people often use strategies such as stimming, pacing, and other regulation techniques to maintain well-being and prevent burnout—yet these behaviors are frequently misunderstood or discouraged.

This panel will explore from the autistic perspective what helps reduce the need to mask, the types of environments and relationships that support authentic self-expression, and how understanding from others can make a meaningful difference in preventing overwhelm and meltdowns.

Learn more here: https://xminds.org/event-6696395?CalendarViewType=1&SelectedDate=6/5/2026

It's virtual and free to attend.

06/05/2026

I first learned about forest bathing years ago, and began practicing in earnest during the pandemic. It's now a mandatory part of my week!

(I haven't been able to convince my kids to join me, so it's just me and my husband for now.)

“Forest bathing” is the literal translation of the Japanese phrase shinrin-yoku. A more accurate description is nature immersion—a kind of meditation practice in which you let the sensory elements of nature wash over you. Yes, it’s as rejuvenating as it sounds. Use our tips to get started.

06/02/2026

The Arc of the United States’ Center for Future Planning is designed to be clear, accessible, and easy to navigate, so you can spend less time searching and more time planning.

Learn more here: https://futureplanning.thearc.org/

Our planning template makes it easy to get started Start Your Plan The Arc’s Center for Future Planning empowers people with disabilities and their families to take charge, plan ahead, and build lives filled with dignity, security, and purpose. About the Center for Future Planning Planning With Pr...

05/29/2026

This gift article from The New York Times does a great job documenting what parents (and kids!) report.

I wish government would go after these practices instead of family members who are paid caregivers for disabled family members.

The industry has grown rapidly, straining state budgets. A focus on finances has led to overbilling, fraud and even harm.

05/27/2026

Join me on May 30th at the Transition to Adulthood Clinic!

Supporting an autistic teen through the transition to adulthood means preparing for much more than graduation. From higher education and employment to independent living and long-term support, this stage often requires thoughtful planning and new systems of care.

An important part of the process is understanding the shift from school-based special education services to adult disability resources and benefits, many of which must be applied for after high school ends.

This is an event to get professional help applying for DORS, DDA, and SSI.

I will have a table at the event until noon. Come say hello!

Learn more here: https://www.xminds.org/event-6540199

05/25/2026

I've long thought of the "autism spectrum" this way - with a complex pattern of strengths and challenges. This is a fantastic tool to help people understand what your autistic child is experiencing.

Read here: https://www.scientificamerican.com/article/the-autism-spectrum-isnt-a-sliding-scale-39-traits-show-the-complexity/

The autism spectrum is big, vibrant and complicated, a new graphic of 39 traits shows

05/20/2026

Great article from Eric Jorgensen about the importance of being able to use ABLE accounts for managing day-to-day expenses.

Or at Least, Incomplete