Celebrating mothers of children with disabilities this Mother’s Day

Daughter, Susie and her mother, Sandy smiling together

Mother’s Day is upon us once again! It’s a chance to celebrate all the moms in our lives—and at AbleLight, we especially like to celebrate all the mothers of children with disabilities.

Sandy is just one of many, many extraordinary moms we’re celebrating. When Sandy’s daughter, Susie, was three months old, she had gone to spend the night with Grandma. When Grandma returned Susie home the next day, she expressed concerns about Susie.

“She just said something didn’t seem right,” says Sandy. “So I decided to take her to the doctor.”

The doctor decided to do a throat swab on Susie—and that’s when their lives changed forever. Susie started choking and wouldn’t stop.

“She started turning all shades of colors,” says Sandy. “Other doctors and nurses all came running, but they couldn’t do anything either.”

The staff ended up calling for an ambulance, and even though there was a waiting room full of people waiting to see the doctor, he ran right past them to get into the ambulance with Susie.

“We didn’t know if she was going to make it,” says Sandy.

Susie did make it. And it was only the first time Sandy had to rush her baby daughter to the hospital because she stopped breathing. Susie also started having seizures. And she was in the ICU multiple times, once staying as long as three weeks.

“I was scared to death,” says Sandy. “I didn’t want my husband to go to work because I didn’t want to be left alone.”

Over time, though, Sandy learned to handle her daughter’s medical needs, and Susie grew into a joyful, thoughtful, loving young woman.

But as she got older, Sandy and her husband worried about what would happen to Susie as they themselves aged. And they end up deciding to move Susie to an AbleLight group home.

“We got married and had kids later in life,” says Sandy. “And as older parents, we felt like it would be a good thing to figure out a plan for her future rather than having to make a spur-of-moment rush decision later on.”

But finding someone who could handle Susie’s medical needs was critically important. She continued to have seizures, which are poorly controlled even on medication. And, like many people with seizure disorders, Susie would often sustain injuries during her seizures.

Finding AbleLight was a relief for Sandy. Here was a lovely home with a dedicated staff—including nurses—who could help look after her daughter.

Susie moved into her new home when she was around 22 years old and has now lived there for more than 20 years.

Susie’s seizures have continued—up to 20 a month, says Sandy—as have the resulting injuries. Susie has done multiple drug trials, one of which landed her in the hospital. She’s needed physical therapy and occupational therapy.

“It’s a lot of responsibility for the staff,” says Sandy. “But they’ve been wonderful.”

One of Susie’s staff members is also one of Susie’s biggest fans: JoAnn Jasper.

JoAnn has known Susie for 15 years and has loved every moment of it.

“Susie has such a sweet, sweet personality and disposition,” she says. “She has a great smile and a great laugh, and she’s super thoughtful.”

JoAnn is also a fierce fighter for Susie, including when it comes to Susie’s medical needs.

“It’s gotten me in trouble sometimes,” she says, recalling a time she had to push to get Susie seen at the ER. “But I’d rather get in trouble than not speak up. We know our individuals well, and we know when something’s wrong. You have to keep advocating for these guys. Let them advocate as much as they can for themselves, but if they can’t we have to be their advocate.”

“It takes a village,” she continues. “The nursing part, the staffing part, the management part, the parents—it’s a team effort.”

“As a parent, you’re concerned that nobody’s going to be looking out for your child as much as you do,” says Sandy. “But we’ve felt they’ve done a really excellent job.”

Even through the pandemic, Sandy has known the best place for her daughter was at AbleLight.

“The staff did an excellent job handling the safety and taking care of them,” she says. “I still knew she was in good hands.”

Recently, Susie moved into a new home within AbleLight. And Sandy is loving this opportunity for her daughter.

“She has her own room and she takes a lot of pride in it,” Sandy says. “We did a bunch of online shopping to help her decorate it.”

At AbleLight, we consider it an honor to support people like Susie. Because it also means we’re supporting moms like Sandy. And moms like Patti, whose autistic twin sons have moved out of their parents’ home for the first time to live independently in their own apartment at AbleLight Village.

“It’s scary and exciting all at the same time,” says Patti. “We were fortunate to find a safe and comforting place at AbleLight Village.” Read more of Patti’s story here.

To Sandy. To Patti. To all the moms out there loving and advocating for their disabled children, this one’s for you. Happy Mother’s Day.