We received the following message through Facebook recently from a former employee. We have her permission to share her family’s story, and the way that her life was impacted by her work at ACR, 20 years ago. Thank you, Laura, for sharing.
Almost 20 years ago I worked for a few years at ACR homes — all the way until a marriage moved me out of town.
I was a float, then got a permanent placement and eventually became a supervisor.
I loved the job and the way we cared for the residents, treating them with high respect and regard.
I thought the job was shaping me to be a better person, reminding me that the intellect I’d cultivated in college didn’t define my goodness or my worth.
But that wasn’t all.
A little under a decade ago I was given a terrible choice. Say goodbye to my “previable” infant at birth, or resuscitate him, knowing that “23 weekers” that survive, if he survived, nearly always became moderately to severely disabled.
Moments before the inevitable delivery, the neonatologist sat with me and my husband and gave us a long laundry list of likely co-morbidities if my child survived. I stopped him part way through, eyeing my spouse for confirmation as I proceeded.
“I’ve worked with nonverbal, non ambulatory adults,” I said, “if that’s his future, it can be a good one. Let’s give resuscitation a shot.” My husband nodded. He knew of whom I spoke. The residents of my main house had attended our wedding.
I remembered one resident and how he loved to see shadows dance. He’d played with my veil during the reception. He had quite the taste for slap stick humor. I remembered another’s love of music, how (nonverbal though he was), he’d sing along with glee. I remembered another resident’s obsession with fast and furious video games and yet another resident’s insistence on eating only red food.
I remembered learning to tube feed, transfer, cath, and safely restrain.
I remember that at first the idea of doing any of it was too much – but then I met the residents. And it wasn’t about my discomfort, but about THEIR comfort. And it all became easier.
I figured the same would be true of my son, too, no matter what the future held.
I didn’t ever like doctors or medicine, but you all helped me be a bit more comfortable around both. You even taught me a bit of doctor-speak that I still use to this day (PRN, BID, NPO, etc.)
After five months in the NICU, I was much more comfortable and familiar with the field of medicine. My son came home with an NG tube. A few months later, he got his Gtube placed. And I wasn’t scared. This was a piece of medical equipment that I understood.
My son is eight now. Because of prematurity and a kidney disorder, he did not walk for a long time. When he did it was with AFOs and a walker. He now runs.
Because of brain damage from prematurity, it has taken him a long time to learn how to use his hands well and he struggles to see people (prosopagnosia). He can do both now, with effort.
He still uses his tube for nutrition part of the time — but he’ll explain to me exactly how to gavage. Same with his monthly renal panels — he’ll tell the phlebotomists how to do their jobs.
As promised at birth, he’ll never outgrow all his disabilities. He inherited Usher Syndrome, the leading cause of adult DeafBlindness.
But he’s good for it. He’s begrudgingly learning braille (and less begrudgingly print) and he loves to sign. His ASL is not always clear because of his brain damage, but he works hard for it. And he speaks.
But more than that, he laughs at shadows on the wall and has dreadful slapstick humor. He loves video games and going faster. He seems to have perfect pitch (despite being hard of hearing) and loves songs. He is particular about food, but will eat when we figure out his preferences.
Not only am I a better parent because of ACR Homes, but you made the choice to BECOME a parent to this kid a very easy choice. I knew, no matter what, he’d be loved and we could find a way to make it work.
At 2 months old he was ready to leave us. Kidney failure, multiple gut perforations (necrosis) and healing from a heart surgery – he’d had enough. He held my pinky and wouldn’t let go. It was as though I was his lifeline. I told him that he needed to fight, that things were GOOD outside the hospital. And he needed to see that good.
I’ve kept that promise. Life on this side of the NICU IS good. You helped pave the way. Thanks to my time floating in group homes with adults on the spectrum, I knew what to expect when my son was diagnosed with autism. I knew how to help him when things got rough, how to hold him so he wouldn’t hurt us or himself as he struggled to calm down. And I knew how to reorient my perspective to understand his, giving him the tools he needed to feel secure in our home and the community.
I suppose this novel is long enough. But I wanted to give you this. I know you have a lot of transient employees. I wanted you to know that even when they leave ACR, you don’t leave them. Not fully. And sometimes you change their lives.
I know this looks just like a mom bragging. And it is. But this is also part of YOUR story and the seeds you sew into all your employees, helping us untangle and unravel and rid ourselves of our ableist prejudices. It changes the world.