Parents of special-needs children share trials, laughter and support
Jennifer Levy thought she was being a good mom when one day she put an "I love you" note into her 6-year-old son's lunchbox.
But, she said, raising kids with special needs is never that simple.
"It was like the worst thing ever because everybody made fun of him and it made him cry and he tore the note into little pieces and it was like this huge trauma," she said.
Stories like these, among many others, are the reason Salt Lake City's Levy, along with Lindsay Bartholomew from Bountiful, founded the nonprofit support group for parents with kids with disabilities called Easy to Love.
Levy has two children, Greyson, 6, who has issues with anxiety, and Hudson, 4, who was diagnosed with autism in 2010. Bartholomew's 4-year-old daughter, Emma, has sensory issues as well as severe anxiety problems.
When Hudson was diagnosed, the focus entirely shifted to him and his needs, Levy said, but no one thought about what she was going through. "All the focus was on him, and I was having this huge grief that my child had been diagnosed autistic."
She had so many questions running through her mind: "Is he going to be the ward of me for the rest of his life? Is he going to have a job? Is he going to date people?"
In light of the diagnosis, her old groups of friends seemed to vanish, and isolation set in.
"It's like living on an island," she said, because of her son's new set of rules. She felt like she was constantly walking on eggshells in her own home.
Levy and Bartholomew realized there were few resources for the parents of special-needs children out there, so they decided to make their own. Now their all-inclusive support group holds two meetings a month, one for parents in Salt Lake City and one for parents in Davis County. At the November meeting in Salt Lake City, where 10 moms were nestled into a room in The Sharing Place on 3300 South, the group exchanged advice and experiences about financial and medical resources, school and the upcoming holidays.
One mother, Anna Madry, asked about how to keep balance among all her children at family events. Her other children love rough-housing and playing with cousins at parties, but her 6-year-old son, Isaiah, who has ADHD as well as a liver condition, could get sick in overwhelming situations like that.
"Do we just tell our family that we're hiding at our house? â¦ Do we scale back for our other kids if we scale back for him?" she asked.
Another mother, Becca Lucas, shared distress over her 4-year-old son Cole's recent behavior at school resulting in a warning of a 10-day suspension. Cole deals with ADHD and anxiety.
"Cole literally destroyed the classroom. He was running through the halls, the principal had detained him, told me she was gonna call the police on him," Lucas said. "It was horrible."
With every story shared and question asked, the moms listened, consoled and often laughed as unusual stories were shared and suggestions were offered.
Every parent went home that night with lists of activities and ideas, as well as an invitation to attend the group's holiday party next month.
As the group continues to grow as the founders hope it will they plan to organize their own office and begin to offer workshops.
Levy and Bartholomew said they're not the experts, but that's not really the point of the group.
"We are a group for the newbie," Levy said. "If you are really struggling out there with whatever is going on and you feel like you just need to connect with somebody, then we are that group."
And even if they don't have advice for parents on a specific disability, Bartholomew added, they can still offer fellowship.
"If they feel supported, I think that's all that matters," she said. "We're there if they need help."
Easy to Love Parent Support Group
Provides a place for parents and family members to meet monthly to share experiences and give strength and hope to families who are raising children with ASD, ADD/ADHD, SPD, anxiety and other mental health, developmental or behavioral struggles. "Through sharing in this experience of raising these 'hard to raise' kids, we grow stronger and more resilient," says their website.
When • The Salt Lake City group is always scheduled for the second Wednesday of the month, 7 to 8 p.m.
Where • The Sharing Place, 1695 E. 3300 South, Salt Lake City
Cost • Free, limited childcare available.