For the past 23 years, Krista Assman has devoted herself to caring for her son Skyler. Born with a rare genetic disorder, mitochondrial disease, Skyler lives with profound disabilities. Assman meets his every need: transport from wheelchair to bed, personal care, tube feeding, and monitoring his oxygen levels every night as he sleeps in a special zipper-enclosed bed that prevents him from falling on the floor. As an only parent, being able to take an occasional break from caring for Skyler has been invaluable for Assman.
Skyler Assman plays with a toy while Krista Assman prepares to feed him.
“As parents raising children with disabilities, we’re hands on 24/7 with our kids from the time they’re born until adulthood. The care that they need doesn’t stop as they grow. It tends to get a little harder as they get bigger,” she says. “Sometimes, [extended] families kind of fizzle out as kids get older. It’s harder for them. They can’t handle it long-term. Respite gives the parents a break so they don’t get burned out.
The term “respite care” refers to temporary caregiving that provides a break for a person’s usual caregiver. For Assman and countless other Michigan caregivers, respite care is vital – but can also be challenging to find. Assman accesses respite care for Skyler through Network180, a program of the Kent County Community Mental Health Authority. Parents of children with disabilities are allotted a set number of respite hours each month and can choose how to use them – for example, a few hours here or there, a day at a time, or a full weekend.
Because of his specific needs, Skyler cannot take part in overnight respite programming outside of his home – for example, weeklong summer camps. He has gone to day camps and, until the agency dropped the program, he especially loved horseback riding through an equestrian therapy program.
Krista Assman prepares Skyler Assman’s food and medications.
“It has definitely helped me tremendously to be able to get out and get a break. Skyler doesn’t go to school during winter months, so having home-based respite services helps me to go to the store to get groceries or anything that is needed for the week,” Assman says. “When caring for a child with disabilities, respite gives us a break to go and do what we need to do.”
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