SpectrumWorld

08/06/2026

As caregivers, we spend a great deal of time asking foundational questions.

Where will my child live?

How will they be financially supported?

Who will coordinate their care?

These questions are essential. Without a solid foundation, everything else becomes much more difficult.

But they aren't the only questions we should be asking.

There are also life-belonging questions.

Who will know what makes my child laugh?

Who will invite them to celebrate birthdays and holidays?

Who will notice when they're having a difficult day?

Who will help them find purpose, friendship, and a place where they truly belong?

Planning gives us a foundation.

Living gives us belonging.

In this week's video, I explain why I believe both kinds of questions matter—and why SpectrumWorld is committed to helping families build lifelong communities of care.

💬 Which questions have been occupying your mind lately: the foundational questions, the life-belonging questions, or both?

08/05/2026

If you're caring for an autistic or disabled adult, you've probably asked yourself questions that few people seem able to answer.

Where will my child live after I'm gone?

Who will love and care for them when I no longer can?

These aren't just questions about housing or services. They're questions about belonging, relationships, purpose, and the kind of life we want our children to have.

That's why I created SpectrumWorld.

My mission is to help families build lifelong communities of care by exploring practical ideas for long-term care, long-term housing, and caregiver sustainability. Every video, newsletter, and conversation is focused on helping families prepare for the future—not with fear, but with hope.

If these questions matter to you, I'd be honored to have you join our community.

💬 What is the biggest concern you have about your child's future?

Sign up here 👉https://spectrumworld.kit.com/7b7463175a

08/03/2026

If college for your son or daughter is on the horizon, this could be a very helpful presentation. Maybe you should reserve a seat?

The Lurie Center for Autism invites you to join Brett Mulder, PsyD, and Jack Lewis, MEd, for a virtual presentation and discussion on navigating the transition to college for autistic individuals. While academic ability is rarely the primary challenge, the transition from the structured supports of high school to the increased independence of college can reveal functional, executive functioning, and emotional challenges. This session will explore the key components of college readiness and provide parents and caregivers with practical strategies for supporting their child's transition. Topics will include evaluating college support services, identifying programs that promote college readiness, and understanding how to find the best fit for a student's individual strengths and support needs.

Registration is required: https://conta.cc/4vEDTkw

07/29/2026

When our children are in school, we have teachers, specialists, therapists, case managers, and IEP meetings.

It isn't perfect, but there is structure.

Then graduation comes.

The IEP meetings stop.

The responsibility doesn't.

Many caregivers suddenly become the coordinator, advocate, historian, crisis manager, and safety net—all at once.

No one really prepares families for that transition.

That's one of the reasons I'm building SpectrumWorld.

💬 If you've experienced the "adult cliff," what changed the most after your child left school?

07/29/2026

https://www.ncsautism.org/kindred This photo essay is absolutely wonderful.

Photojournalist Lynn Johnson follows two young adults with severe autism, and the mothers keeping them alive, through a week of advocacy in Washington.

07/28/2026

There are some places that become part of your family's story.

For Charles and me, that place was Lake Almaden.

We were fortunate to have it just across the street from our home. Looking back, I sometimes think that lake is where we survived.

Charles loved to wander slowly along the shoreline, always searching for "treasure." He could spend hours examining rocks, sticks, feathers, bottle caps—anything that caught his attention. Every walk was a new adventure through his eyes.

Of course, those adventures weren't without their challenges. Fishermen would occasionally leave behind fishing line or hooks, and if anything potentially dangerous was lying around, Charles always seemed to find it. He had an almost unbelievable talent for discovering exactly the things I hoped he wouldn't. For some reason, he liked to put dead fish in his pocket. So even on our peaceful walks, I could never completely relax. I always had to stay alert.

By that time, Charles had mostly outgrown his tendency to run away. But if he spotted a dog, everything changed. In an instant, he'd take off after it.

Those moments taught me something I wasn't ready to admit.

I began to realize that there would eventually come a day when I wouldn't be physically able to keep him safe on my own.

That realization was heartbreaking.

But most days, the lake wasn't about fear. It was simply our place. Just a father and his son walking together, talking very little, sharing the quiet, and making memories that I'll carry with me for the rest of my life.

What about you?

Is there a special place that you and your autistic child return to again and again? I'd love to hear your story.

07/23/2026

I deeply appreciate this nuanced point of view: "integration" is not one-size-fits-all: for many individuals with severe autism, profound intellectual disability, self-injurious behavior, or complex medical needs, the most appropriate, safest, and most enabling setting may be the family home, a licensed group home, a supported living home, an intentional community or an intermediate care facility (ICF), depending on the individual's needs and their guardian's informed judgment — not a default assumption that a generic community placement is always preferable.

The National Council on Severe Autism (NCSA) offers the follow comments on the notice published by the U.S. Department of Justice (DOJ) Civil Rights Division in the Federal Register (91 FR 45287, filed July 17, 2026, and published July 20, 2026) clarifying the legal status of the Department's 2011 "...

07/12/2026

If you’re feeling stuck, overwhelmed, or unsure about how to address the question of what happens to your child after you are gone, here's an idea.

Before making plans or big decisions, try something simple:

Write down what your child loves… and what they hate.

It may seem small, but this exercise can bring clarity, reduce stress, and help you take the first real step forward.

If you’re feeling stuck, overwhelmed, or unsure where to begin—star...

07/11/2026

The more clarity we have the better 👇