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Autism: Sunshine Moment of Hope

autism autism sibling behavioral dysregulation disability diversity inclusion inclusive living institutionalization life quality multimodal communication segregation self-determination supported living Oct 05, 2023
Close-up image of Joaquin's hand holding Diana's hand

My brother, Joaquin, is my sunshine. He is autistic. And his needs are complex. What I wouldn't give to see him able to achieve his dreams. What I wouldn't give for him to clearly communicate his feelings and his dreams with me.

Joaquin is a multimodal communicator. Sometimes he communicates with words, most of which are unreliable. He also communicates through body language, facial expressions, sounds, and behavior (especially behavior). We often have to piece together what he is telling us, through careful, respectful, and responsive observation. Now, later in his life, he is learning to communicate through supported typing on a letter board. But he can only do this when he is in control of his body. I wish we had known about typing when he was younger so that he could have grown up with typing as a norm, and could have had a way to reliably communicate his desires, fears and frustrations. But because he didn't learn any reliable means of communication growing up in the 70's and 80's, his behavioral dysregulation took over, he was medicated with psychotropics to which he was highly allergic, and was subsequently institutionalized for 15 years.

Although Joaquin is now my neighbor, and life is better than it was in the institution, behavioral dysregulation is still a regular part of our lives. And he seems to cycle, depending on how he is feeling medically, and/or emotionally, and how accurately he is able to communicate his needs to us. We have amazing days. And we have excruciatingly bad, and even scary days.

Given that Joaquin is a big, strong man, when he's in a behavioral crisis, it's really hard on him. It's hard on me. It's hard on his support staff. Things get broken. People get hurt if we're not careful. He and everyone else is exhausted when the episode is over. It's such a low, discouraging time for us.

The past couple weeks have been a very low time for Joaquin and our family and staff, with a seemingly endless series of behavioral episodes. Although I'm thankful that he got to experience it all while surrounded by family, a loving community, and an extraordinary team of support staff, it was hard. Everyone, including Joaquin, was drained.

And then one morning, the proverbial gray skies overhead turned into sunlight, and Joaquin woke up feeling the love. His body was calm. He was smiling. He was laughing. He was his happy self.

As soon as he was dressed for the day, Joaquin and I felt the need to go for a walk down our dirt road, surrounded by trees and singing birds. He who loves affection, yet can typically tolerate sustained hugs or handholding for only seconds, grabbed my hand during the walk, and would not let go.

Then he spontaneously, verbally said the second line of one of our favorite sing-a-longs... "you make me happy.”

These profound, sunshine moments fill me with hope. Joaquin may have held my hand. But he also held my heart.

Joaquin has been able to communicate consent for Diana's public sharing of their journey. When able, he participates in her presentations. To learn more about their story, see Diana's TEDx Talk.

To book a keynote presentation on Joaquin and Diana's powerful journey to inclusion, simply email: [email protected]

Diana is thrilled to announce her newest resource for educators (and families) now available through National Professional Resources, Inc. This is a laminated trifold, quick, easy, convenient resource packed full of foundational, research-based tips for your disability awareness discussions and events. It's called Beyond Disability Awareness: An Educator's Guide.

Listen to Diana's podcast, Beyond Awareness: Disability Awareness That Matters.


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