Getting Help, Giving Back
Tim Mulrooney and Melissa Haley, St. Paul
When lives are touched by intellectual and developmental disabilities, people can find themselves on a journey very different from the one they expected. For Tim Mulrooney and Melissa Haley, the unexpected journey began four years ago when their second son, Emmett, was born. Emmett began missing developmental milestones at an early age, and at 20 months was diagnosed with a rare genetic condition called Smith-Magenis syndrome.
"Emmett's disability shows up in a number of ways," said Tim. "He doesn't speak yet, and he has sensory integration issues, hearing loss, a sleep disorder and immune deficiencies. He also has behavior issues, mainly explosive temper tantrums. He's a delightful kid, but when he gets frustrated, he lets you know."
Tim and Melissa learned about Arc when they were looking for information about Smith-Magenis on the Internet. They called Arc for assistance when they began working with their school district to plan Emmett's services.
"Melissa and I are both lawyers, but we were dealing with people who knew the system better than we did, and we wanted to know what to ask for and where to push," said Tim. "We spoke several times with an Arc advocate, and that guidance was very helpful."
He added, "As we waded through the phenomenally complicated world of services and funding, we thought, 'Wow, we're lawyers and this is still difficult.' How much harder would it be for somebody who doesn't have our professional training or our support network of family and friends?
"All of a sudden, you're part of a community of people dealing with intellectual and developmental disabilities," said Tim. "When you become part of that community, you realize people are struggling to get what they need. And you realize how important it is to support organizations like Arc."
Although caring for Emmett and his big brother Simon is a non-stop job, Tim and Melissa make time to give back to Arc. Melissa joined Arc's Health and Managed Care Action Network, and her involvement motivated Tim to become a member of the Board of Directors in 2007.
"Raising a child with a disability can be a lonely experience," Tim said. "You can't do it alone. That's why we reached out to Arc for help, and we will keep reaching out as new milestones and transitions come along in Emmett's life. If we can give back to support Arc, we're happy to do that.
"Until you experience the challenges yourself, you don't realize how important it is to support organizations like Arc," Tim said. "There are good people in the community who want to make lives better for people with intellectual and developmental disabilities. We want to put Arc on their radar."
"Raising a child with a disability can be a lonely experience. You can't do it alone. Arc is a great resource...they really do help."