Transformation in Robert’s Life
March 11, 2015
Elim's efforts to support people who live with autism take on a number of different approaches throughout the Elim community. But life doesn't end at Elim's campus borders. Over 150 people we serve have autism, and many of them return home each night. What is life like for these families? We asked one Elim family to share some of their story with us, and with you.
What was it like to find out Robert had autism?
Mom: When I first started to realize Robert was struggling, the doctors didn’t want to think there was really anything wrong with him. We finally got him to see a specialist who agreed that he had autism. By 22 months of age, he was in 40 hours of therapy a week.
Dad: We consider ourselves fortunate to have determined the diagnosis so quickly. Having a twin not on the spectrum made it easier to see that Robert was.
Many parents of children with disabilities say that they, at some point or another, mourn the loss of the life that child might have lived. How did you respond to this new part of your family’s lives?
Mom: It was so much action, I never had time to think about what was wrong. They were twins, so even without autism, it was chaos from the moment they were born. I never really had a lot of time to reflect on that loss.
Dad: I think there’s a little bit of a mini-death-grieving proves. I am at a different stage of faith now. But at that time, I fell into that pattern of expecting what my son’s life was going to look like. And then you have all that shattered when you get the diagnosis. There’s fear and anxiety about what that portends.
As Robert reaches maturity, what is life like today?
Mom: Right now, daily life with Robert at this point in time is not horrendous by any means. He is getting older, but when when we tell him that he’s getting big, he scrunches down and says he is a “small boy.” There have been periods of time where tantrums were a daily thing. There have been dark times with behavior and acting out. As a family we couldn’t go anywhere. We couldn’t go to church, or restaurants. He would run away from the house to look at train lights, so even just knowing where he was could be a constant stress. We had years that were full of stress, stress, unending stress. Those were hard years.
Now, he amuses himself pretty well. He stays busy with things that interest him.
Dad: Elim was at the heart of that transformation. When we look back on it, we realize how blessed we were by the Elim experience. Were it not for multiple people loving him through those dark days. We’ve seen the kingdom of God break in and change him. When I think about how we could have gone through the traditional institutional process without Christ, I know he’d be a different kid.
Mom: We barely made it through those days. I felt like I was always hanging on to this hair of hope, just waiting year upon year upon year. I kept a journal and I just noticed it was just staying the same with the same stresses that never stopped coming at us.
Dad: Anybody can relate whether you have a cold or some terrible illness, you just never imagine there being another way. Life becomes all about reaction and crisis management. You are almost always responding to a new emergency.
Mom: We could sit here today and fret about the future, and in part, we fret much less because of Elim. Being in a Christ-centered school where we’ve see literal transformation. And that happens at a very practical level. Last semester, Robert started having tantrums again, and we couldn’t understand why. So the teachers started trouble-shooting with us. They found out he was exposed to too much noise. They got him out of that environment and it made a huge difference. They are willing to do what it takes on an individual level to help Robert achieve what he is capable of.
Dad: Our’s is a story of transformation in Robert’s life and in the lives of the people he touches. God can do mighty things, but we’re not sure it would look the same without Elim in the equation.
For Robert, Elim is not just a school. It is community for him. It is in the context of the body of Christ. It is very wholistic. He talks about school and makes pictures for his teachers. That’s his part of the body of Christ where he is thriving.
Sometimes our church communities come around us and support us, and sometimes they act as though we are intruding when we bring someone with disabilities into their midst. How did your church respond?
Mom: God’s people came around us. One of the best things was they developed was a team of people to be Robert’s special friends. Starting when he was about 12 or 13, they would take him upstairs and let him play with play-dough in a different room. It was amazing because for almost 12 years we hadn’t been able to go to church together. And finally, last year, we were able to bring him into church with us.
Dad: That’s where the play-dough art thing started. That’s how he was going to give something back through his art. It would become something that his special friends showed interest in, and Robert enjoyed sharing his art with them.
It harkens back to what we were talking about before, that sense of fear, anxiety, loss. Now with the benefit of hindsight, we can definitely see how God has used Robert. There is no member of our family that is a greater blessing to our community. He loves to give of himself and his art.
Putting aside the world’s expectations, Robert has exceeded what we could have hoped for. He really does brings great blessing. Robert loves without judgment. He is friendly. He doesn’t come with preconceived notions of who people are and what they’re about. It is reflective of our Savior.