When a child is born with an intellectual and developmental disability, the news can be jarring to a family. There are so many questions and where to even start to look for the answers? Months after the birth of their daughter, Faith, Tom and Stacey Nickel found ADEC and the relationship has proven to be a perfect one. ADEC has helped Faith picture the possibilities of what she can be while providing Tom and Stacey with a sense of security for their daughter. Meanwhile, the ADEC staffers who have worked with Faith have invariably found her to be a pleasure.
Here is the whole story in Stacey’s own words…
How did you first get connected with ADEC?
“We have four kids and Faith is the youngest of the four. She’s 24 now. We first found out about ADEC through first steps when Faith was about three months old. First steps contacted us but Faith was born with congestive heart failure so we couldn’t do anything until we had that fixed. At about six moths old, first steps connected us with ADEC so Faith could start getting developmental therapy. It’s continued from there with different services. Since she was six months old, she’s been getting something from ADEC.”
What programs has the family benefitted from?
“Faith got developmental therapy and then physical and occupational therapy. She’s been in the after-school program. She does the Tuesday night young adult supper club that hopefully will start again soon. She gets music therapy and she currently attends the skills and training center.”
What are some of the biggest challenges your family has faced trying to provide opportunities for Faith?
“The single biggest challenge has been when she transitioned from the young adult program in the school system into not having anything any more. I think that’s the biggest challenge for people with kids with disabilities at the young adult age is finding things that they can do and be in the community and have social interaction. One nice thing about ADEC is it provides her with that. The biggest challenge as a young adult moving into adulthood is finding things to do and places where she can be included in the community.”
How has ADEC helped you overcome some of those challenges?
“The biggest thing as a family is the sense of security in knowing there’s an organization that we can turn to. There hasn’t been a time when I’ve called with a question and someone hasn’t either known right away or found the answer for me. They’re working really hard on that transitional age. They’re trying to find programs. The skills and training center is a great example of how they realized and then addressed a big void in that age group. The sense of security of knowing there is some place to turn to help us help her is the biggest thing ADEC does for us.”
What inspired you to get involved?
“Tom rode in the Ride-A-Bike every year since Faith was born. He was always passionate about raising money. I forget who originally contacted him but he was asked if there was anything that could be done to improve Ride-A-Bike and Tom is never short on suggestions. They liked some of his ideas and that evolved over time until they asked him to be on the board. We felt passionately that if there’s an organization that can help any sector of people – in this case disabled people – then supporting them is our duty as part of the community to make it the best it can be. So we’ve reached out to people we know to raise money. It’s important to us to support an organization that’s helping families.”
How has ADEC helped provide more possibilities for Faith and your whole family?
“Specifically, for Faith, the skills and training center has been a huge help to her. She has a job at a restaurant (Sports Time Family Pub & Grill in Elkhart) that will hire her back when they can open to full capacity. That program has really helped her not only understand job skills but life skills. They’ve done a really good job of helping the kids understand grocery shopping and taking a job seriously. They’ve helped them understand what being a part of the community is and that they’re a citizen just like anybody else in terms of their responsibilities and what they can do to contribute.
“I go back to that sense of security for us. Having that resource to be able to turn to if you have questions anywhere from Medicaid waiver to activities. There are countless times I’ve called (employment services program manager) Monica Davis about Faith’s job and asked her for advice. That would be the biggest thing – having a resource you can ask for advice and turn to if you have a question. For us, it’s been invaluable. If you have a question, they’ll figure it out or turn you in the right direction to somebody somewhere. Having that safety net has been invaluable to us for almost 25 years.”
Could you imagine life without ADEC?
“No. I’d have no idea. There are other organizations but the one thing about ADEC is that it’s such a big umbrella. I can’t imagine having to go over here for this and there for that instead of having this place where I can come and everything is self-contained. And, if they don’t have it, they know where you can get it. I can’t even picture a world where we weren’t involved with ADEC and Faith wasn’t involved with ADEC. I can’t even imagine where she’d be because she has so many friends that she’s made, not only peers but staff members as well who have made such an impact on her life.
“Faith’s very fortunate because she has a strong support system with family, friends, church, all of that. She’s very fortunate, but there are so many people like her who don’t have that and ADEC is that support system for them. I wish more people in the community could understand that everybody – no matter what your abilities or disabilities – needs a support system. The guardianship program, for example, not many people know that exists but it’s so important.
“It is very scary as a parent because my other three kids moved out of the house and have the tools to make the right decisions. Faith is probably never going to have the ability to make those kind of decisions. Knowing that ADEC is there for the rest of her life for whatever she may need (gives me comfort as a parent).”