| Arc Parent Finds Her Own Space In the 15 years since her son Isaiah was born, Margie Austin had never had a weekend to herself. For many single parents of children with special needs, finding help is not easy. Professional "respite" services are available, but expensive. And if you can't afford a professional—how do you know who to trust? One thing she did know was that she wasn't about to let just any stranger watch over her child. It was much better to be safe than sorry. Still, after a decade and a half of watchful care, she felt like she could use a break—even if just for a single night. For her and thousands of other parents of children on the Pennsylvania service waiting list, getting a break isn't easy. |
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The service waiting list is a bureaucratic grey zone for people who need services but aren't a priority because their need isn't deemed critical. There are nearly 23,000 individuals on the Pennsylvania service waiting list.
As a professional advocate and board member at The Arc of Philadelphia, Margie was used to fighting for the needs of others. But when it came to her own needs, she found herself overwhelmed.
The crucial moment came at a meeting of parents who had recently left the Pennsylvania Waiting List with Philadelphia Mental Retardation Services director Kathy Sykes. It wasn't until she heard Margie parents talk about the services they were receiving that she realized how stressful it was to have no supports.
"Right then I stopped being an advocate and became a mom. I simply broke down," said Margie. Addressing the group in tears, she said, "I am so happy for all you've got for your kids, but I've got nothing."
Ms. Sykes told Margie that she had never known how much stress she was under. Though she could not get Isaiah permanent funding, she was willing to have the county pay for a few days of recreational services.
Margie chose to send Isaiah to one The Arc of Philadelphia/PDDC's overnight camps.
Margie knew that her son would "have a ball" on the overnight camp—where Isaiah could sleep under the stars and visit the shore—but she admitted letting go wasn't entirely easy. In fact, she was a "nervous wreck" for the first night.
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But as the weekend moved on, she began to enjoy something she hadn't experienced in over a decade—some time to herself. She was also able to get some valuable perspective on her relationship with her son. In a thank-you letter to Kathy Sykes, she explained that she had learned that her son's independence was going to be more painful for her than she’d expected: "Releasing Isaiah was very difficult. I realize I also depend on him to be here for me as well. I know now from his eagerness to scurry off and leave me that he's growing up and no longer wants " |
to hold on to my skirt. It's going to take me a while to get use to this.
As long as Isaiah remains with his mother in a stable household, it's likely that such opportunities for him to get some time away from his mother will continue to be scarce. Without vocal pressure on the state legislature, thousands of Pennsylvania families will continue to be affected by the waiting list.
"If it's hard for me—one who has worked in the profession for over a decade—imagine what it's like for parents looking at the system from the outside. I know what it's like. That's why I continue to fight to get funding for the thousands of families affected by the PA waiting list."
In time, she hopes that the people who set the budget in Harrisburg will one day listen to the needs of families like hers.
In the meantime, she will find time for herself when she can.
The Arc of Philadelphia / PDDC • 2350 W. Westmoreland St • Philadelphia, PA 19140 • 215-229-4550