When your kid with autism graduates from high school, you have more than a few fleeting moments of sheer panic. You suddenly realize that in spite of all the frustrations and headaches that go along with autism and public education, at least when your kid was in school, he had a place. He belonged somewhere. No matter how well or poorly the school team did it's job, at least there was a team. There was someone besides you who had responsibility to see that he was progressing. Now that he has graduated, there is no more team. Your kid only has you to figure out what his next step will be.
When Duncan graduated from high school, we were proud. And scared. Not sure that we had done the right thing letting him graduate on time with his class. He could have stayed in high school for a while longer, but they didn't have much else to offer, other than a familiar place to go every day. We felt like Duncan needed more than that. We just had no idea what that looked like or where to go next. All I knew for sure was that waking up one morning 25 years down the road and having a lazy, unshaven, out-of shape 43 year old man living in my basement and playing video games all day was not a viable option for us. And that if I wanted to prevent that from happening, it was up to me to find opportunities for Duncan that would give him chances to work and learn and interact. And I had no idea where to even start. There is no handbook that comes with raising an autistic kid. It is a fly by the seat of your pants experience that doesn't end once they hit adulthood.
I wish I could say that answers were quick to come and that we quickly found a new team of people who could offer help and advice. That was not the case. Duncan graduated from high school two years ago, and in that time we have met with mostly bad advice and closed doors. It's not that there aren't people who try to help. It's partly a problem of the nature of the diagnosis. Autism is a spectrum. There are not textbook cases or textbook answers. One program might work perfectly for one person, and be a perfect disaster for the next, even though they might appear to have similar issues. You just never know until you try. So I guess what I have learned over the past two years is a lot of things that have not worked for Duncan. That is not to say they won't work for someone else. But nothing seemed to be a great fit for us.
One doctor strongly suggested that we immediately apply for social security disability income for him. So that's where we started. After six months of applications, meetings, testing, doctor visits, documentation of everything that had ever happened to him since birth, more doctor visits and evaluations, he was denied. At first I was so angry. He is obviously disabled. All the doctors we saw classified him that way. How could they deny him? I KNOW people on SSI who are less disabled than Duncan. I was told to keep at it. Keep fighting their decision. Like with every other thing associated with autism, if you make a big enough stink and are annoying enough, eventually we could get him approved.
Here is the thing though. Social security income is a ridiculously paltry sum. For Duncan, it was like $400 a month. And even though they tell you that you are encouraged to work, as soon as you start to earn money they start deducting your income from the amount they send you. We could have spent our time and energy fighting it, but for what? So that he could be limited to earning $400 a month sitting at home alone? That is not the life I want for him. He is capable and deserving of so much more. He is capable of work. He needs a sense of purpose and accomplishment as much as anybody, as well as the satisfaction of earning his way. It wasn't hard to see that helping him find work would be a much greater blessing than helping him learn to be dependent.
So the next step was voc rehab. That was a joke. His first counselor there was nearing retirement and almost palpably uninterested in what happened to Duncan. He was just a name on her list. But still, he got assigned a job coach that did a half decent job of working with him. After nearly a year of working with this job coach, he finally got a job working 10 measly hours a week as a bus boy. At first we were excited. It was a place to start, and his job coach promised that he could eventually work into more hours. The people he worked with were kind, and seemed ready to give him a shot. It seemed to go great for a while. He liked the job, and was doing well. Then after four months, the place got a new manager and almost immediately after the new manager started, she fired Duncan. We went back to voc rehab thinking that surely there was something they could do. It didn't seem right that a business could agree to hire a person with disabilities and then just up and fire them at the drop of a hat. They told us that they see this happen all the time. Yes, legally, we could fight it, but for what? Ten hours a week and a manager that was obviously uninterested in helping him? Our energy would be better invested in starting over with a new job coach and going through the whole process again. He got assigned a new and better voc rehab counselor, and we were moving forward with finding a new job coach. I was not looking forward to another year of job searching though.
In the meantime, the most important person in all of this had been spending his days mostly sitting at home alone while his family was all off at work, or school. He did chores around the house. He walked the dog. He played on the computer. On my days off, we would run errands together and go to lunch, we would apply for jobs, and he volunteered here and there when I could get him there. I was trying everything I could find to make something happen for him, and so very little was actually happening in his life. He was becoming that reclusive guy I feared I would find in my basement one day.
Through all of this time and effort, floating around in our heads was the idea that Duncan could be a service missionary for our church. Mormons are well known for their young proselyting missionaries who volunteer for 18 to 24 months to preach the gospel and serve in an area far from their homes. Most people are not as familiar with the less visible service missionary program, which is a program for people who want to serve but are unable to serve a full time proselyting mission. This program gives both young missionaries and older people too, the chance to serve close to home, either full time or part time. It offers more flexibility for people with disabilities or other limitations and still lets them use whatever skills or abilities they have to serve. This sounded like a great opportunity for Duncan, and more important, through many prayers and contemplation, it felt right. Even though, because of his autism, he was honorably excused from serving a full time proselyting mission, I felt the strong impression that he still needed to serve, and that he still deserved the experiences and blessings that would come to him through serving in the way he could.
Frustratingly though, we could not seem to find the right fit for him. I knew that for Duncan to be successful in a service mission he needed the right mentor. He needed someone who could take the time to get to know him and his abilities, give him the right kind of training, and keep him on track. We never seemed to connect with the right people who knew where we could turn and what we needed. Many sleepless nights, many prayers and hours of investigating opportunities had not produced anything yet. I began to wonder if I was wrong about Duncan and a mission. Maybe it was only me that wanted this to be the right thing for him. He was scared and unsure about the thought of serving a mission. He didn't know what to expect, and I didn't have any answers to give him. Was it only my pride that was pushing him into serving? Was this whole idea a mistake? How long could we sit around and wait on the right opportunity? So we kept looking, but we kept seeking out other options too.
In the middle of all of this, I was planning my daughter's wedding. For a few months, the wedding took front and center of all of our time, energy, and mental abilities. I was in the middle of working on some things with voc rehab for Duncan, and then everything got shoved aside while we concentrated on the wedding. I was scheduled to take two weeks off work for the wedding, and it was about my last day there before my time off started that a couple came into my work. It was a busy day, but I remember hearing snippets of a conversation my co-worker Mindy was having with this couple, something about them being missionaries, but I didn't pay much attention to it. Little did I know at the time that the answer to our prayers was literally standing right in front of me, and everything would soon fall into place in perfect time.
For the next two glorious weeks, everything was wedding and celebration. And even after I was back at work, the wedding still the main topic of conversation for a while. Everybody wanted to know all the details and how everything had turned out. It was not long at all though, maybe even as soon as my second day back when sweet Mindy suddenly jumped. "Lynne!" she said. "I just remembered! I need to talk to you about something! I've been thinking and thinking about this, and I just have to ask you." She then went on to tell me about her long conversation with the missionary couple from two weeks ago. It turns out that he was a pharmacist for my company and had recently retired, which is why my friend had struck up the conversation in the first place. He and his wife had just been called to oversee a brand new pilot program for young service missionaries. It is starting up in only Davis and Weber counties and is something completely new and different. They would be overseeing missionaries at the Deseret Mill in Kaysville and were currently just getting things up and running and were beginning to look for young men and women who might fit the bill to serve there. They were so excited about this new program, and my friend, as she was listening, kept thinking of Duncan. What's funny about that is that she doesn't really know Duncan. She has met him once or twice, and of course I have talked to her about him, but it's not like she really knows him. Anyway, she meant to tell me about it that day, but with all the hullabaloo of a regular day in the pharmacy, added to all the extra hubbub surrounding the wedding, she forgot.
She forgot until the perfect time, when the wedding was over and I had room in my brain to think again. She told me all that they had talked about, then called that nice couple and got me in touch with them. I spoke for quite a while with them on the phone, and the more I heard, the more this sounded like the perfect spot for Duncan. Within a week or so, we had met with the missionary couple and taken a tour of the mill, filled out the application and met with the bishop. A week later we met with the stake president, and about a week after that, we got the official call. And now, Elder Metcalf, as they call him there, is one of the first two official full time young church service missionaries for the Church of Jesus Christ of Latter Day Saints at the Deseret Mill.
The program is designed to be as close to a regular proselyting mission as it can be. He will have study and journal time each day, a devotional each day, service time in the mill, life skills training, and scripture study. They are currently recruiting new missionaries, and eventually, each group of six missionaries will be supervised by a senior couple who works right along side them. There are devotionals and zone conferences and temple trips just like any other mission. The couples that are there serving are dedicated to helping these kids succeed, and the best thing is they are willing to cater each missionary's experience to their abilities.
It is hard to believe, but all of my prayers and concerns about finding the right circumstances for Duncan were answered. The senior missionaries he is working with are the perfect mentors for him. They are excited to be serving there with kids like Duncan. They have the patience and time to work with him. He is a big part of their calling. They get it. They recognize their call and Duncan's call, and the whole operation of the mill as all vital parts in Christ's work, and they help Duncan to see that too. He will also get the chance to form friendships with missionaries who are his age, and to gain experience and skills that he will take with him his whole life. He is serving, yes, but he is receiving so much more.
Honestly, in my life, the times when prayers have been answered so concretely and so obviously are few and far between. Every once in a while though, I get the message, loud and clear, that Someone is listening. It never was and never is all up to me. We've got folks on our team. Friends in high places. And friends right beside us too.
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