His caregiver is a good man who wants what’s best for J. He takes J from the group home and brings him out into the community. He really cares.￼
But he’s learned to talk about J as if J can’t understand.
“J just needs to wait until I’m ready to feed him and I’ll make sure he doesn’t eat crap.” While this statement is borne out of care for J and his sensitive stomach - imagine if someone were saying that about you if you lost the ability to speak.
But like I said, he’s a good guy who cares. So we as a staff discussed that we would model behavior where we would invite J into the conversation with a reply like;
“Hey J, sometimes I wish someone would help me manage my junk food cravings. I know that I shouldn’t eat a whole bag of cookies but sometimes I just can’t think of much else if I know they are in the house.” Now J is part of the conversation and we take some of the shame and stigma away from his diet being forever in the control of others. J often looks you directly in the eye and you are pretty sure that he is both processing the statement and appreciating your efforts.
J. often grabs and bites bridle and breastplate - hence this particular tack. Because of his sensory challenges he can't wear a helmet.
Today, J’s caregiver was kindly massaging J’s hands which are usually gnarled up in strange twists. Sometimes J puts his fingers in his mouth to twist them further. His caregiver, was seeking to relieve some of J’s pain. J’s caregiver was telling me how J’s hands are relaxed in the truck, but as soon as he gets out, the twisting starts. So I addressed J and his caregiver with this
“When I was in school, I did this thing with my fingers” - and I showed them this stacking thing I used to like to do. “I knew it would hurt but I kind of liked the hurt for some reason.”
Suddenly, J started to hop up and down and laugh and then he tackled me with a full body hug - something he’s never done.
J felt heard and understood and he rewarded me with a hug I hope I will never forget.
The gift of dignity.
Thank you J.