April 6, 2018 at 1:53 p.m.
FAMILIES' DILEMMA
Making decisions for adult children with disabilities
Rosemarie Tobin, the Albany diocesan consultant for people with disabilities, said that, often, families struggle with "denial and not wanting to realize that you, as a parent, are getting older.
"Sometimes, the parents are afraid to let go," Ms. Tobin added. "They've taken so close care of the [now-adult] child, they're holding on too much. The child could be capable of more."
There are day programs, group homes and other resources available to aid families in these situations; however, those resources aren't always readily available.
Although all families with adult children who have disabilities are faced with the difficult task of planning for their children's future, the way they handle it is as diverse as each child's disabilities.
On their own?
Debbie Gilligan, the mother of 22-year-old Katie, noted that, in her case, "There's no rush" to make a decision: "She's currently in a day program."
Katie, who has Down syndrome, attends LifeSong in Clifton Park. "It gets her out and about, so that she's not just at home," said Mrs. Gilligan, a parishioner of St. Michael's Church in Troy. "With the day program, you're not as worried that she's alone the whole day."
Katie often tells her parents that she wants an apartment of her own, but "she needs to show us" her ability to handle that, said Mrs. Gilligan: "Once I see she has the drive and desire, then we'll look into it."
Katie's parents want her to first take more responsibility for day-to-day chores like doing her own laundry, making dinner and washing dishes.
"Half the time, I just want to treat her regular. She's typical. She's 22 on the outside, but she's younger on the inside," Mrs. Gilligan remarked. "One minute, she's looking at baseball players and thinking they're cute; the next minute, she's watching the Disney Channel."
Group home?
For many, placement in a group home is the choice. But getting adult children with disabilities into such homes can be a lengthy and stressful process -- and parents may be forced into urgency because of health or safety issues.
For Fran and Jim Owen of Transfiguration parish in Speigletown/Schaghticoke, the need to find a group home for their 29-year-old daughter, Julia, is pressing: "She can't be without someone," said Mrs. Owen.
Julia has intellectual disabilities and multiple physical disabilities. Although she attends a day program, she's been on the waiting list for a group home for three or four years.
"A resident has to die before someone can get in," her father explained.
"Our big worry is that we need a place for her to live when we die," he said. "There are so many people in the same boat."
For Deacon Edward Solomon, who serves St. Joseph's parish in Broadalbin and St. Francis of Assisi in Northville, getting his daughter, Sarah Fox-Solomon, into a group home felt like the right thing to do.
Now 36, Sarah moved into a group home run by the Wildwood Programs in Schenectady when she was 24.
"She was ready to move; it was time," Deacon Solomon recalled, adding that it's important to find a group home that's right for the specific individual: "We didn't want Sarah to be in a place where everybody was precisely like her.
Letting go
"Some parents don't want to give up their full-time responsibilities with their child, thinking that, 'I, as a parent, can do much better than any group home or facility can,'" he continued. "Some parents, because they want to protect their child, may not want to put their child in a home. The problem is they wait too long."
For Paula and Richard DeWeese of St. Edward's parish in Clifton Park, that fear became all too real. After having their son, Dickie, at home all his life, they realized they needed to find a group home for him.
Dickie was born three months premature and has spastic quadriplegia. Unable to speak, he taps a pad on his wheelchair with his cheek to communicate.
After Mrs. DeWeese had breast cancer, she was no longer able to lift or care for Dickie the way she once could. That was a wake-up call for the family.
At first, the family hired a home health aide to help with Dickie's care, but "we were very, very concerned," said Mr. DeWeese. "We had to do something; we couldn't keep putting it off."
Still a loss
Dickie, who's 39, now lives in a group home just miles down the road from the family's Rexford home. Although he's very happy there, the transition wasn't as easy for his parents. Mrs. DeWeese began having non-epileptic seizures due to stress. She and her husband both felt the effects of empty nest syndrome.
"He has a giant toboggan, and I'd go take him out and go all through the woods," Mrs. DeWeese recalled. The family also built a dollhouse together: Dickie made the decisions while his parents assembled it.
Mrs. DeWeese compared having Dickie move to the group home to losing him, saying that it is "complete emptiness.
"It's a blessing to have a child with disabilities," she said, but "no one should ever think that it's an easy thing to do."
Ms. Tobin can understand stories like that. When families have to place an adult child with disabilities in any kind of facility, she said, "you feel like you're giving the care of your child over."
But "in reality, you're still an active member of that team. [There are] people out there that can help you plan; you just need to know who to contact."
(Contact Ms. Tobin at 518-453-6666 or Catholic Charities Disabilities Services at 518-783-1111.)[[In-content Ad]]
250 X 250 AD
250 X 250 AD
Events
250 X 250 AD
Comments:
You must login to comment.