A Chanute mother is having trouble finding caregivers to help with her disabled son.
Juli Castellucci is a single mother with three sons ranging from 8 years old to less than 1 year old. The oldest boy, Athen, has Phelan McDermid Syndrome, a rare genetic condition that causes psychiatric and neurological disabilities, including and similar to severe autism.
“It’s very difficult to take care of him,” Castellucci said.
She said he was diagnosed when he was four years old, and at that time there were only 700 reported cases worldwide. Now there are about 1,200, which she said is due to improved diagnosis and testing and greater awareness.
Athen is non-verbal and requires constant one-on-one care, but Castellucci has difficulty hiring people to help. The caregivers stay in shifts, with one or two at a time.
“Frankly, not even one person is enough,” Castellucci said.
She began working with Southeast Kansas Respite Services about 1 ½ years ago. Castellucci said it took her a long time to come to terms with Athen’s situation.
“I can do it myself,” she said she thought at the time. “I don’t know how we survived.”
Athen’s care makes it difficult to hold down a job. She needs about five caregivers to handle the rotation on a weekly basis. Since hiring caregivers, she has had 20 to 30 people with as many as four for one week and some lasting up to seven months.
Currently Castellucci has two caregivers, but they are not available on weekends. Instead, Athen goes to a respite home, similar to a foster family.
“I want him to be home on the weekends,” she said.
Caregivers need training in first aid, CPR and other areas, some of which Castellucci can provide and some that is provided by the Dual Diagnosis Treatment and Training Services team at Parsons Hospital.
The agency provides background checks, which Castellucci said are strict. An applicant who had a conviction three years ago for driving under the influence would not be accepted.
Castellucci said she could be more lenient if she could hire on her own, but she would still have to meet state guidelines. They would prefer to use shorter shifts, but now that Athen is older and bigger, it is more difficult to care for him.
“He can’t stop himself,” Castellucci said. “He just has such terrible impulse-control issues.”
They have placed fliers around town to hire caregivers and Castellucci said she is grateful to the agency for its help.
“I’m very grateful for anyone,” she said. “There is nowhere for him to go.”