SUMMIT COUNTY — As 16-year-old Steven Kennedy learns to navigate the halls of Summit High School this week for the first time, his mother, Kristin Kennedy, is filled with many of the same emotions other parents are feeling: excitement, pride, anxiety. But she is a little more preoccupied than the average mother, wondering if Steven will be able to sit still in his 90-minute science class, if other students will tease him, and if she'll be able to find a safe activity for him during the couple hours after he gets out of school while she is still at work.

Steven has Down's syndrome, a genetic disorder that places the Frisco teen at the developmental level of an elementary-age child in most circumstances.

“He just had his 16th birthday, but I would put him somewhere between 5 and 10,” Kennedy said. “Sometimes I would put him at 12 or 13, but he really plays better with kids who are in kindergarten or first grade.”

Steven's special needs require he have almost constant supervision. But it has often been difficult for Kennedy and her husband to find caregivers who are qualified to look after their son.

“When you have a 7-year-old who's still wearing diapers, it's hard to find someone who's willing to take that on,” Kennedy said.

Kennedy's love for Steven is immeasurable, but helping him navigate a world that wasn't designed for him has often left her emotionally and physically exhausted. And her intense love for her child can sometimes lead her toward feelings of guilt over the little things she's not doing for him when she runs out of steam.

“I think, I should be working with him more on reading. And, a lot of the time, Steven is in his own little imaginary world, and I feel guilty for not pulling him out of that by asking him questions and interacting with him. I should be doing more,” Kennedy said.

Reassurance — and a break

Thankfully, Kennedy has found a place to air all those feelings and to be reminded she's not alone in feeling them. A local group of parents called Families of Exceptional Learners (FOEL) provides a supportive environment for those who have children with severe needs. The group meets once or twice a month to hear from expert speakers, to exchange information on accessing various resources, and often, just to talk.

“These parents get it,” said FOEL leader Betty Sarber of Breckenridge. “When you tell a story about your difficult case, these families go, ‘Oh, yeah.' You always get that feeling of being supported.”

Sarber's child has mental health issues, and he's stable now, but his younger years were fraught with huge challenges. So Sarber knows how important it can be for parents to be able to identify with others facing similar circumstances.

In addition to the social support FOEL provides, the group also offers an opportunity for parents to get a much-needed break. For those who take on the majority of the care-giving for severe-needs children, time to themselves is a rare thing. But at every meeting, Sarber arranges for free professional care tailored to each individual child.

“You need a place where you know your child's needs are being met, so you can leave or just relax. I know how desperate you can feel and how isolated from the community you can feel,” Sarber said.

Angela Mattson of Frisco knows that feeling, and she too, has found respite in FOEL. Her youngest child, 10, has autism.

“The reason I like this group is that the people in it know what it's like to live outside the box,” Mattson said. “You don't have to explain yourself. When my son was younger, we'd be at the store, and he'd reach over into someone's cart to pick a grape. I remember how upset people would be and how difficult it was to explain.”

For Mattson and other parents, FOEL has been a valuable place to exchange helpful information, strategies and resources on everything from potty training, to Medicare to visits to the dentist. When needed, the group will advocate on behalf of one of its members with schools, social services agencies and other organizations. Such support can make seemingly overwhelming challenges feel more manageable.

“The hardest point with any child diagnosed with a challenge is at the beginning,” Mattson said. “When you come home from the hospital with a diagnosis that your child may be mentally retarded, that's a very hard thing to hear. And you think, now what? Where do I start?”

FOEL parents are eager to share their own experiences and support and expand the group with new members. But outreach can be difficult, since privacy laws prevent doctors and teachers from letting the group know who may benefit from its services.

“I know there are people out there, and I want them to feel comfortable talking to any of us,” Kennedy said. “A lot of times people are so scared and freaked out that they won't make that phone call. But e-mail can be a great place to start. I want people to feel like this group is a good, safe place to come.”

SDN reporter Julie Sutor can be reached at (970) 668-4630 or jsutor@summitdaily.com.