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Parents form networking group for special needs kids

Raising a child can prove challenging for just about any parent, but when you throw a special need into the mix, the level of stress can go up even higher.

"Stress is a really good word for it," laughed Sherri Johnson, a Detroit Lakes mother of a 12-year old son touched by a mild form of autism, "especially when you go out in public and something happens, and people are looking at you like, 'wow, why don't you discipline your kid?'"

But the Johnsons are far from alone when it comes to those struggles, and now they're making sure of that.

Johnson is one of a core group of parents of children with special needs and a handful of health and education professionals who are joining together for a new special kids networking group.

Although some local parents have tried in the past to form autism or other special needs support groups, it's been tough keeping them together.

"When we moved here three years ago there was one here, but I think it just got too tough with time constraints on the parents running it," said Johnson.

According to Diane McCormack, a pediatric occupational therapist for Essential Health, a lack of time, a lack of real resources and a lack of communication often leave parents without support.

"So what we're doing is consolidating, pooling resources and making one big group," said McCormack, who got approval from Essential Health St. Mary's to hold monthly support group meetings at their new EMS building in Detroit Lakes.

The idea is to group parents of older special needs children who have "been there, done that," with parents who are struggling with new diagnoses or concerned about missed developmental benchmarks.

McCormack says special needs children are often taken on a journey from a small developmental delay to depression and anxiety to an array of issues in between ... and parents are right there in the journey with them.

"And through this journey, parents need a place to go to talk to other parents who know what they're going through," said McCormack, who adds that it's not just for kids with autism.

"Whether your child had a learning disability, autism, downs syndrome, cerebral palsy or any type of genetic disorder ... all are welcome because a lot of times those kids have multiple needs, and parents are often times looking for similar things -- such as recreational activities, and respite care or social skill programs."

According to Marcy Matson, director of federal programs for the Detroit Lakes School District, the need for an umbrella group like this is great, given the fact that there are 614 students in the district with one kind of disability or another.

"We've got everything from hearing impaired to some that need total care with feeding tubes," said Matson, "and it's just a different world for those parents who experience their own set of unique struggles, and they need to know that we do have specialized services available."

Johnson says getting all the parents together on a regular basis will hopefully serve as a bridge over that communication gap as there will now be a central place to go.

"It's good to have support from those other parents that can say, 'have you tried this or that?' and just talk to people who really understand what you're going through," said Johnson, who says she's noticed people in the Detroit Lakes community stepping up awareness of the issue.

McCormack agrees, saying faith communities and after school programs have been inquiring about how they can help special needs students.

"And that's great, so I think now parents can get together and start to talk about wishes and needs and wants," said McCormack, "and once you start talking, then people can start envisioning how they can make it happen."

DL Special Kids Networking Group will meet one Friday night a month from 5:30 to 7 p.m. (except for the busiest months of December, May and July), and McCormack says the Friday night plan was picked by parents.

"They thought after the meeting, they could go out on a date or socialize with other parents because that's important, too," said McCormack, "I think they feel that as parents united they have a voice."

For more information on the group, call McCormack at 844-8377.