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The Afternoon I Spent as an Adult With Special Needs

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Back when I did head injury work, we often engaged in training sessions with families where we helped facilitate what it feels like to be an adult who suddenly has lost the ability to see or use a limb. I found it extremely enlightening for family members to get that insight, if even for a few hours.

I recently had the opportunity to experience something firsthand that I’d never gotten to experience before –nor do I want to again.

I spent the day as a mostly nonverbal, mobility-limited adult.

Without going into great medical detail, I spent the bulk of a day awake on a ventilator while my ability to move my face and neck was greatly restricted, as were my upper and lower extremities, due to catheters and blood pressure cuffs. I was completely unable to speak, although I did have the ability to communicate via writing (and sign; however, no one actually knew sign language so that wasn’t extremely helpful.)

It was excruciating. I kept trying to communicate. By no faults of their own, doctors put medical needs first, and my attempts at communication were often ignored or even thwarted. Attempts at self-repositioning were misinterpreted as attempts to dislodge equipment when, really, oh my God, sometimes your butt just hurts after you’ve been in the same position for awhile. I’ve never had so much respect for what life as an adult with special needs might be like because I’d have never experienced such an uncomfortable position for so long.

I’ll go back to work (where I help adults with intellectual disabilities) with a newfound respect for people with limited mobility. I’ll go back home with greater patience for my children and their heightened communication needs. I’ll miss that phone call so I can give my child a longer response time. I’ll understand when an adult I work with bangs his arm to show me he may need something he’s not getting. I’ll understand that sometimes your butt just really hurts.

I knew all these things before. I know them now. I get them now.


A version of this post originally appeared on The Behavior Station.

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Originally published: March 5, 2015
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