Throughout the month of May, we are honoring our DSC Moms!!! All of you do so much each and every day, and we want to take this opportunity to share some of the inspirational moments and the challenges you have faced. Happy Mother’s Day! We celebrate you!
Sheila, wife to Philip and mom to Daniel, (who will celebrate his 29th birthday this month), and Daniel’s two, older sisters, Natalie, and Rachel. Daniel receives residential and employment services from DSC.
Daniel was not very social as a child, but he spoke quite well at the age of two. Unfortunately, around the age of four, things took a turn for the worse. At that time, Daniel lost his speech. Sheila took him to Carle’s Disability Clinic and was then referred to Chicago. Daniel was then diagnosed with a type of autism. “It was a very trying time,” said Sheila.
Sheila was involved with C-U Autism Network, as a Coordinator, when she learned about DSC. “We would have DSC in to speak, so I heard about DSC there and from others in my network. An early memory I have with DSC is walking in the parade with Daniel. DSC was working in the community to get the Developmental Disabilities Board started, and we got involved. Because we learned about Daniel’s diagnosis a little later, we never received Early Intervention services, but we received Respite services from DSC all along the way. Those days were definitely challenging. He was always trying to run off, and we could barely keep up with him. He was so hyperactive.”
Not being able to fully communicate doesn’t mean that he can’t communicate at all. It does mean that having the right support system in place is important for Daniel to live as independently as possible. More recently, their family was notified that Daniel had been selected from the State of Illinois PUNS (Prioritization of Urgency of Need of Services) List and qualified for funding for a CILA (Community Integrated Living Arrangement).
The PUNS list is a statewide database of individuals who want and need Developmental Disability Waiver services that are funded by IDHS (Illinois Department of Human Services). As funding becomes available, individuals are notified and invited to apply. “We immediately contacted Patty Walters and Danielle Matthews at DSC about getting Daniel into a CILA because we knew this could take some time. Additionally, all of this was happening during the pandemic,” said Sheila. “He moved in October, and then due to the guidelines at the time, we only saw him while home for two-weeks at Thanksgiving and for Christmas. It’s only recently, since we’ve all been vaccinated that he can come for a day, or a weekend.” Time with family is encouraged and supported and everyone is excited that statewide COVID restrictions are loosening up.
Sheila says it’s been an adjustment, but explained that they’ve raised all of their children with the goal of independence. Daniel has worked at Planet Fitness for eight years now, and he has been involved in track and swimming through Special Olympics. “Living at a CILA, he’s around his peers more now, not just his Dad and me. It’s important to raise your kids with a work ethic, and high expectations. We always wanted to teach him to be a good citizen. I think a lot of people know Daniel because when he was growing up, if I participated in activities, I took him with me. If I was volunteering to help DSC at the Illinois Marathon, he wanted to help at the starting corrals, too.”
If you’re a parent who is recently learning about your child’s diagnosis, or even a parent who has been on this path for a long time, Sheila advises that it’s important not to be too critical of yourself. “When I volunteered with the C-U Autism Network, one of my favorite things to tell families was not to guilt themselves. Of course there is always more any parent can do. I look back and think maybe we should’ve done more speech therapy, but insurance didn’t cover all of it at the time. You can’t be so hard on yourself like that. You’ll drive yourself crazy.”
Today, Sheila said she is grateful for being Daniel’s mom and her experiences as a parent. “People love having Daniel around. He never complains and loves to help others. When he was out with his peers at school, he would get the wheelchair out of the trunk of the car for one of his old classmates, without having to be asked. He likes to show that he is capable. When we traveled to China, he made us look good because he was the first to sample all of the food there, while I was the picky eater. Another time we went to Mississippi on a church mission trip to help with a Habitat for Humanity project, and Daniel was so good at laying ceramic tile flooring because of his precision and attention to detail. There is a saying about people with autism, ‘work is play, and play is work,’ and that was demonstrated with the Habitat project.”
As a family, Sheila said they love to do activities together outdoors.” Going for walks has always been an activity we’ve enjoyed together.” Prior to Covid-19 they’ve taken the train across Canada to go hiking, visited the Grand Canyon and went rafting on the Colorado River. “Daniel loves being out on the boat.”
Thank you, Sheila for sharing your story and all you do as a Mom! Happy Mother’s Day!