NKY group helps moms along special needs road

My family and I once found ourselves on the road from Louisville to Lexington in the midst of a snow storm. Flakes fell fast and thick and covered the painted lines that marked lanes and edges of asphalt. Wipers brushed snow off the windshield, and we looked out onto a landscape with no clearly defined road. Except for one clue: travelers before us left tracks in the snow. As the snow deepened around us, we slowly and carefully followed those tracks, grateful for their help in finding our way.

I think about that long-ago trip today, when, on this special needs journey, I’ve been fortunate to meet others who have gone before us through a storm. They’ve helped us figure out how to get an IEP, find respite services, apply for Medicaid, administer the ketogenic diet, obtain guardianship. The list goes on and grows with each passing year, and I am filled with thanks for those who leave tracks for us to follow, who share their advice and experience, who help us find our way.

Valerie Whisnant understands what I’m talking about. When her son, Zack, received his autism diagnosis more than a dozen years ago, someone introduced her to Mothers of Special Children of NKY, a group that’s all about helping moms of children with special needs find their way. Still, she didn’t know what to expect at the first meeting she attended.

“You’re scared to death to be there,” she told me, recalling those early, questioning days of a diagnosis when life is filled with uncertainty. “You don’t have any clue what you’re doing. I mean, it’s all brand new.”

Not to worry. The meeting was good, and Whisnant clicked with other moms. “I’ve been a part of it ever since,” she said. “I gained a lot of friends. I was part of something again. Zack was part of something.”

Now Whisnant is one of four officers of Mothers of Special Children of NKY, serving as the correspondence secretary. We talked recently about the group and its mission.

Any mom, any diagnosis

Mothers of Special Children of NKY welcomes any mom, grandmother or female guardian of a child with any diagnosis, Whisnant said. The group offers emotional support, especially to those just learning of their child’s diagnosis. Those can be difficult days when families may feel alone in their struggles, but MSC lets them know that others have been through similar challenges and understand what they’re facing.

The group offers practical support too, she said, as moms share experiences regarding resources and programs to help their children. The moms in the group have a wide range of experience – from those with young children learning about school services and applying for Medicaid to those with older children who are dealing with guardianship applications and transitioning to adulthood, Whisnant said. To provide targeted help, she said, the group connects moms whose children have similar diagnoses.

“There are a thousand journeys going on in one group,” Whisnant said of the situations members face. “There’s no road map, there’s no manual. It’s just us … it’s everybody helping each other with information.”

So it seems these moms do more than leave tracks in the snow for others to follow. They gather behind fellow travelers and help push them through the storm.

Traveling companions

MSC offers a few ways to join in on the journey:

  • Its webpage is mscnky.com. The page introduces visitors to the group and its officers and includes contact information.
  • A Yahoo group enables moms to connect with each other online. Here also the group makes announcements and keeps members informed about community events for people with special needs. To join, go to groups.yahoo.com, search for MothersofSpecialChildren and click on it. You will need a Yahoo email account.
  • A Facebook page, Mothers of Special Children of NKy, allows members of the closed group to ask questions and share information.
  • Members meet the second Thursday of each month for support dinners at Northern Kentucky restaurants. Locations are announced on the group’s Facebook page.

Whisnant said the group’s official membership on its database hovers around 50 as new people come and older ones go. The database tracks member residences, contact information and diagnoses so the group can connect new moms with members in similar situations to answer questions or share concerns.

The group’s Facebook page, though, has a lot more members, Whisnant said. Begun in 2013, the page had 129 members at last check. The dinners are smaller gatherings, with attendance ranging from three to more than a dozen. The group, which has existed for decades, used to have a formal meeting structure but found that the dinners attracted more members, Whisnant said.

“You can come and just listen,” she said. “Some want that. Others want to engage right away and want to share their experiences.”

Colleen Bracke began attending MSC meetings when her son Ryan was four weeks old. He’s now 29 and has Down Syndrome. Another son, Sammy, is 27, has spina bifida and is on the autism spectrum.

You can come and just listen. Some want that. Others want to engage right away and want to share their experiences.

“It was a huge life-saver for me,” said Bracke, noting that she’s not the type of person who asks for help. The support and information she received, along with the friendships she made, helped her cope with her family’s challenges, she said. “I know I cried on a lot of shoulders.”

Bracke also helped others. The group used to have a phone line, and for years it came into her house, she said. While she’s not as involved now that her sons are older, MSC’s impact has been long-lasting. “Some of the women I am closest to come from that group,” she said.

Over the years Whisnant has noticed how members cycle in and out of the group according to need. Also, as members gain experience, knowledge and a support system, their role in the group changes, she said. “You go from getting information to giving information.”

MSC is all about making a difference in lives – first your child’s, then other families’, Whisnant said. “If we can help any parent in any way, that’s what we’re there for.”

Showing the way. Like tracks before us in a snow storm.

As we forge ahead – whether our journeys take us through snow storms or the challenges of caring for someone with special needs – we leave hope along the road. Maybe without even realizing. As we follow the tracks left by those before us, we leave new marks. We keep the path fresh. We show others that the road does not end. The world does not end. We help others find their way.

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