For families of children with autism and other special needs, daily living demands constant planning and juggling. High health-care costs can leave few funds for daycare. And many parents, who know their kids’ challenges so intimately, struggle with the idea of leaving them with strangers.
The result is many get little alone time – for themselves or as a couple. But in families where the divorce rates hover at 80 percent, parent respite is as crucial as the high-demand care their children need. If you’re in southeast Michigan, find out what other parents like you are doing – and how to get help.
Family and friends
Child-care help often comes from family members who live locally – or trusted neighbors who know the situation.
“You really need support around you,” said Ann Guilian, a Northville mom of three with one autistic child. “Having family members who can help you out is very important.” For her family, grandparents have been a lifesaver.
Sometimes, that’s not feasible. Sue Tharp, an Allen Park mom of four, has a 22-year-old son with a genetic syndrome. That’s caused him to be cognitively impaired, and he requires fulltime care.
When her son was younger, Tharp tried family members – but they couldn’t baby-sit as much as her job needed them to. She once tried a friend, but that only lasted a week. Several times, people hung up on her when she called for help. The willing wanted more money.
“I eventually figured that it I couldn’t find family or friends to do it, then I couldn’t work,” Tharp says.
Ultimately, though, with help of her closer-by neighbors – and her other kids, who are either adults or teens – Tharp has been able to take trips with her husband and even go to the store without having to take her son.
Respite care services
Many special needs families, young and old, use respite care. This service provides day and overnight care to special needs kids or adults, allowing families to take a break from the daily life of caring for someone else.
The Lahser Respite Home in Beverly Hills, for instance, is able to house six children ages 5 to 17. Depending on the need, children get an allotted number of days that they can use respite. Lahser is affiliated with the Judson Center, a community-based service provider – including many programs for special-needs families.
Other local support nonprofits also offer assistance. The Arc is a national charity that provides legal advocacy for those with special needs. Beyond its online community, several local chapters in the metro Detroit area provide free help with special education and other challenges.
Smaller, individually run programs are also options. Friendship Circle in West Bloomfield provides a welcoming environment for special needs children, while parents are able to take a break, even just for a little while.
For all of these places, the goal is to give parents a break while providing a safe, nurturing environment for the child.
Shannon and Bob Gougeon of Clawson try to grab moments. Their older son, Travis, 8, has a form of autism that makes him non-verbal. Shannon works nights and Bob days, so one can always be with Travis.
“When we can, we get about five hours of respite care a week, which isn’t really a lot,” Shannon Gougeon says. To get away, usually, one parent stays home with Travis and Kyle, 3, while the other goes out with friends. It helps.
Mom and dad rarely get alone time together, she admits. Yet they can rely on extended family members or neighbors to watch the kids for a short time.
“The neighbors will baby sit as often as they can,” Gougeon adds. “Even just coming and sitting in the backyard while I’m doing laundry helps out a lot – because you always have to watch them.”
Families with out-of-state family or few close-to-home solutions also can turn government agencies – or in-person and online support groups, which can connect them to other parents of kids with similar disabilities.
“There is a Yahoo! Group where I’ve met some really good friends,” Gougeon says. “People pass on advice and help others out. It’s been very helpful and supportive.”
Other examples include local Autism Society chapters, Michigan-based nonprofit networking and resource hub Bridges4Kids, and Communities of Power, focused on organizing Michigan’s disability community. Also check Metro Parent’s list of resources for Asperger’s syndrome and autism.