An unexpected blessing

Six years ago, when it became clear that Joe and Jake, our then-12-year-old twin boys with autism, needed more support than our local school system could provide, we were comforted to know that we have a really good special needs school near our Springfield, Ill., home.

Then we were stunned to learn that, due to various issues, our boys couldn’t go to that school. And stunned again when it was suggested that the best place for them was three-and-a-half hours away, at a place we’d never heard of: Damar Services.

In hindsight, it was an absolute blessing.

Born eight weeks premature, Joe and Jake are identical in many ways, including their disabilities. They’ve always had developmental delays, and they’re both nonverbal, although they can find ways to tell you exactly what they want. Neither has much patience, and we always say they can be best friends or worst enemies at any given moment of the day.

Joe and Jake were diagnosed with autism around age four, and, over time, their behaviors became more and more challenging. Our other son, Will, is seven years younger than the twins, so we have always had various dynamics going on.

Eventually, as they got closer to their teen years, Joe’s and Jake’s Individualized Education Program (IEP) teams decided the twins needed a different setting, which led to their placement at Damar. It was a process that involved a lot of crying on our part, with the year right before they went to Damar being especially difficult. But when we checked out Damar and were introduced to Sam Moya and his residential services team, we felt like we had found the right place. Over the years, we’ve become more and more impressed, especially by how much the community of Indianapolis supports Damar.

Now, six years later, it’s like night and day. As much as we worried about the decision and as much as we dreaded having the twins so far away, they’re in a much better place and they’re doing much better than they would if they were home with us.

Normally, we go and visit the boys every third weekend. Sometimes we go for one long day, other times we’ll get a hotel room for the night and spend a couple of days with them. We take them out for dinner or maybe go to a movie.

Those are some of the times when we can see the biggest change in the boys. For example, they used to be “runners” – they’d take off at every opportunity – so, any time you were out in public with them, you literally had to keep them within arm’s length to keep them from running off. Now that’s changed. We’re still mindful and careful, but we can get out of the car and walk to the movie without worrying about them taking off. Their little brother might still hold their hands, but now it’s because he likes to, not because we feel like somebody has to.

We also see a difference around holidays when we bring them home. They’re great for a few days, but then they start to slip back into old behaviors. It reinforces the reason they’re at Damar: At Damar, they have the structure and routine they need, and they have people around them who know how to help them avoid those old behaviors.

We’ve missed getting together with Joe and Jake during the COVID-19 restrictions, and we look forward to being with them again soon. Damar has helped us deal with the separation by letting us FaceTime with the boys every day (their hair is getting really bushy!), but this is by far the longest we’ve ever gone without being with them. We did consider bringing them home during this pandemic period, and our liaison from our local schools said they would support us if we brought the boys home. But we decided not to. We know they’re in the right place.

The challenge for us now is that, as the boys get older, we have to start thinking about where they’ll go when they “age out” of Damar. We find it amazing that, seven years ago, it was decided that a structured environment was best for our boys, but now because of the “system” that dictates that they no longer qualify for the supports that make Damar’s residential services possible, they’re going to be sent back home, out of the environment that’s done so much for them, leaving us looking for the proper funding for a social service organization to assist them.

So the future isn’t clear for our family, but one thing is: No matter where the boys go from here, we know that letting them go to a place we’d never heard of three-and-a-half hours away was exactly the right thing to do six years ago. You can’t even put into words what Damar has done for our family. We couldn’t have asked for a better situation.