Community Corner

New Website Helps Washington County Families with Special Needs Children

The Stillwater-based network Stepping Up Moving Forward has developed an online community called ConnectWC.org that is a convenient way for parents of children with intellectual and developmental disabilities to get continually updated information, while

Learning your child has a disability is devastating and life-changing for most parents.

With or without a diagnosis, most parents are left feeling alone and confused when looking for a place to turn for help, but now a network of parents, guardians and community members from the Stillwater area has joined forces to change that for Washington County families.

ConnectWC.org.

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“Trying to find services and support to help can be time consuming and down right overwhelming,” said Jammi Hansen Blair, the CCP Foundation administrator. “Increasing privacy laws have made this isolation even worse, but these parents are far from alone.”

Statistics show there are nearly 2,000 people living with intellectual and developmental disabilities (IDD) in Washington County, including 1,205 who are receiving formal government services. About 600 others are on waiting lists for support services and others may not even be aware of the services that are available.

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That is why the Stillwater-based network Stepping Up Moving Forward developed ConnectWC, a comprehensive website that contains all the vital A-Z information and support parents need all in one place.

“Shortly after receiving a diagnosis parents are deluged with information from doctors, teachers, therapists, specialists and county representatives as they begin a new life working within a system they previously knew nothing about,” said Sharon Lindstrom, the website’s Creator/Manager and mother of an adult daughter with IDD, “And they are doing all this while grieving the loss of a life they once dreamed for their child. “

Historically, parents of children with IDD—which includes ADD/ADHD, autism spectrum disorders, traumatic brain injury, Down Syndrome, learning disabilities, Cerebral Palsy, and physical conditions including vision and hearing impairments—have searched for resources to help their children by themselves and keep reinventing the wheel, Hansen Blair said.

“Parents no longer need to exhaust themselves looking for help—the legwork has already been done,” she said. An online site is a very convenient way to get continually updated information, and connect parents with one another.

A Dream Come True

The project is not only a passion, but very personal for many Stepping Up Moving Forward members who have children with an IDD and experienced these struggles first hand.

Chloette Haley’s son, now 23, cried 17 hours a day for the first few years of his life.

“He was our first and when I would take him to the doctor and explain that I felt something was wrong, I was told ‘it is colic,’” Haley said.

Because Haley’s instincts told her something was “just not right,” she eventually asked to see the head doctor of the clinic.

“I explained, ‘He doesn't want to eat, and when he does, he perspires,’” Haley said. I don't think that is part of colic is it?"

The doctor agreed and sent Haley and her husband directly to the heart clinic at Minneapolis Children's Hospital.

“After a Friday afternoon filled with tests and lots of questions, the cardiologist came into the room and said to me and my husband, ‘Have you ever noticed that your son doesn't look like either of you?’

Haley’s responded by pointing out that he has her blue eyes and nose and his father’s fingers.

‘”Looking back, this was my first significant experience of feeling the need to defend and claim our son from a world that seemed cold and uncaring,” Haley said.

The cardiologist proceeded to tell the Haleys their son had Williams Syndrome—and he would be significantly developmentally delayed.

“There were no nurses around, no social worker, just a diagnosis that sounded like the end of the world,” she said. “We were sent home as if we had just been told our son had a common cold with no information, no words of comfort ... nothing.

“While I thought something was making my son unhappy and extremely uncomfortable, never did a diagnosis like this enter my mind,” she continued. “I was in shock. I was numb.”

Haley’s husband, took action and called the March of Dimes in New York City, where the couple was turned on to “a bit more information” and given the contact information for the national Williams Syndrome Association.

“The trail from this point has been a bit like living in a corn maze,” Haley said. “The kind where you panic because you can't find your way out."

ConnectWC will help other parents avoid what the Haley family went through 23 years ago, she said.

“They will be lead through the process of what to do when you suspect something is wrong, or what to do if you already have a diagnosis,” she said. “They will not have to ‘write the manual’ for themselves, but rather go about the business of their family—loving and raising a child with developmental disabilities in a community where they are understood and belong.”


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