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Group offers care for moms of special-needs kids

Tribune - 12/6/2019

Dec. 4--Michele Thorne's life took an unexpected turn not long after she became a mother.

With a bachelor's degree in genetics and a master's in science, she had worked at the Translational Genomics Research Institute, or TGen, for five years.

But she gave up her career because her children, Jackson, 6, and Maria, 3, were both diagnosed as autistic.

"I had to quit my career in order to be with them," she said, explaining the need to get her kids to various therapies was just too time-consuming to also hold down a job.

It is out of this understanding of the challenges faced by mothers of special needs children -- or, as she prefers to call them, "differently-abled" kids -- the Tempe woman formed an organization called DAMES, an acronym for Differently-Abled Mothers Empowerment Society.

The acronym plays off a the name of an honorific title given women in Britain and some other countries.

"I was searching for a word that kind of encapsulates moms like me who are out there battling for their kids relentlessly day-in and day-out," she explained. "These mothers are relentless in their search for care and protection of their children."

Thorne is active in a number of region-wide organizations such as the Autism Society of Greater Phoenix, but she did not find a group filling the kind of needs she's trying to meet with DAMES.

"There's nothing out there that really takes care of the deeper self-care mothers really need," she said.

For example, she said, "It's really hard for parents who have special needs children to get out and find somebody to watch their kids so they can go to a support group meeting."

So she developed an elaborate website, damesusa.com, where they can find the support online.

"What I've tried to do is make sure everything is accessible to a mom anytime she needs it, wherever she's at," Thorne said.

"That's why it's all online. That's why there's an app. If she's having a rough day and needs to meditate or she needs to maybe do a yoga class just to kind of re-center herself, all of those tools are available to her wherever she's at."

She offers yoga and other fitness classes online, as well as guided meditation, monthly webinar series and similar helpful tools.

"At the end of the month they will have 12 webinars they can actually just watch at home instead of having to go out to a conference where maybe they won't even be able to get to 12th," Thorne said.

Thorne envisions taking the organization nationally, which is why she focuses on online services for moms.

Although she thinks she eventually will, she said, "I haven't really started to do branch out sessions yet in the community. I'm not sure what those are going to look like."

She explained moms with differently-abled children face a great deal of physical and emotional challenges -- something she knows first-hand.

"I was teaching classes to college students about genetics, but at home I couldn't even teach my child how to speak," she said, noting her son is nonverbal. And so, there's a lot of depression with that. And it took a lot to pull me out of depression."

She said she realized that, "I have to start taking care of myself before I can really start to care for my child. And so that's where the emphasis of this came from -- that realization of we are people too in these relationships and as moms, we're driving the bus and so we can't fall off.

"We have to keep ourselves together so that we can give our kids the care that they need."

She recalled attending a Caregivers Day gathering last year at the State Capitol, where most of the attendees had been caring for an elderly parent with dementia or other debilitating ailment.

"When you think about parents who are raising special needs children, we're not doing it for five to six years. I mean, we're doing it for the rest of our lives most likely. And so, there's a whole other level of just wear and tear that of goes on because it's not a short-term commitment. It is the rest of your life dedicated to caring for your child."

She stressed that other organizations, such as the Autism Society, provide critically needed help, but the assistance her organization offers is directed at people whose children confront a whole range of disabling ailments.

"Sometimes I feel very blessed that my children have autism because I have so much help and support," she said. "There are networks out there, organizations like the Autism Society, that are there for me. But I have friends whose children have like fibromyalgia. I have another cousin whose son has a feeding tube.

"And my whole feeling is 'where is their community? Where is their tribe and how do we build a tribe that's not just for autism families, but for all families who are raising special needs children?'"

Despite the demands of motherhood, Thorne said she derives considerable satisfaction through DAMES.

"I'm giving back and trying to give hope and self-care and community to these women and it has just been a real big blessing for me. And it's a real part of my selfcare too -- to help others.

Thorne has organized a special business expo and donation drive for mothers of special needs children.

"Many mothers raising special needs children become entrepreneurs because a 9-5 job doesn't work when you are juggling getting your child to doctor's appointments, therapies and school, she explained.

At the expo/donation drive, the public can get Christmas shopping done and support special needs families in their communities.

The expo will be at Function Pilates Studio at 1840 E. Warner Road, Tempe, 7 a.m.-1 p.m.Dec. 7 and 8:30 a.m.-2:30 p.m.Dec. 8.

Information: michele@damesusa.com.

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