A Daughter’s Diagnosis and a Refusal to Give in to Despair
The diagnosis stalked us for two years before it stepped into the light one warm March morning. “Dads, I hate calling it cerebral palsy,” our daughter’s pediatric neurologist told us on the phone, “because it sends parents down a spiral, picturing the most severe...
You Robbie, You Baka
I knew twins sometimes switched places and went to each other’s classes, waiting to see who’d notice the difference. With his severe cerebral palsy and bone-thin frame, no one would ever mistake Danny for me, though it would’ve been fun to try. I at least wanted my...
In Germany, How To Teach Empathy For The Disabled
The exercise was part of a four-hour training session called SENSE, which uses a mock supermarket recreated at BMV by the international chain REWE to give nursing students a first hand experience on what it’s like for people with disabilities to shop at inaccessible...
This Food Delivery Worker Won’t Let Coronavirus Get in Her Way
In the daytime, she’s taking care of her daughter, De’Onna, 20, who has cerebral palsy. At night, she’s delivering meals through the company DoorDash, a food delivery app. At DoorDash, women make up over half of its “dashers” in suburban areas and more than 60 percent...
How To Find Sex-Positive, Queer-Friendly Disability Aides
Are you helping someone hire a disability aide? This guide from Eva Sweeney will walk you through how (and where) to post an ad, what questions to ask during the screening and interview, as well as how to know if it’s not a good fit. For those who need help with... Salty Tips for Dating Someone with a Disability
What if you see a hot person with a disability out and about or on one of your dating apps and you want to ask them out? Because there is not a lot of visibility or information about people with disabilities, able-bodied people often don’t know what to do or how to...
Caring for Tor | An intimate look at the life of a young caregiver
Stephane put his life on hold to care for his baby brother. Tor is nonverbal and requires 24/7 care. When Tor reached 21, day services were cut off and his parents couldn’t manage providing care around the clock without Stephane’s help. Stephane and his...
Growing old with Moy Moy
When I say dependent, of course, I mean on us. Ravi is 72 now and I am 60. The circle of life has not passed us by either. We are old parents to be caring for a helpless young one. Moy Moy, though not heavy by any normal standard, still weighs 100 pounds. Though the...
Parents of Kids With Special Health Needs Are Making a Huge, Secret Social Contribution
Susan estimates that her husband and Jack’s siblings spent about 14 hours a week actively caring for him. She did the rest. It wasn’t easy. “I really feel for people that have children with severe disabilities,” Susan told me. “Isolation and loneliness come with the...
Who cares about the invisible lives of caregivers?
by Donna Thomson, author of The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving When I was a teenager, I longed for something exciting to happen. Walking home from school, I prayed for tragedy, drama and romance. “Be careful what...
What’s the Difference Between Parent and Caregiver?
Throughout the years of our son’s life, the identity of caregiver has pulled and pushed me like tides ebbing and flowing.
What do I do now?
It was January 30, 2001 – 7:41 pm. As quickly as my son was delivered by an emergency c-section, he was carried off by the nurses to the NICU. That began one of the longest nights of my life. After several hours, my wife began to wonder why they had not brought our...Great Expectations: Caregiving Before the Diagnosis
Finally we attended an appointment and they advised they felt that BJ had Cerebral Palsy. I didn’t know what that was or how it would impact on BJ or our lives.
How Things Work When Your Lover Is Also Your Caregiver
I had been physically dependent on my mother for even the most basic things for my entire life; she had to hand off that responsibility to someone new, and she was terrified. Over time, my mom had become increasingly unable to do these transfers by herself, so she and...Top Posts
Recent Comments