Transition from the Trenches

Originally published October 17, 2011.Autism is tough on marriages. While autism was not the reason for the demise of my first marriage, I found myself to be a single mom of a 9-month-old, and went through the realization of “something isn’t right with my son” without a partner. Being a single mom is tough. Being a single mom of a child with disabilities is… well, even suckier. I am very fortunate in that I got the whole marriage thing right the second time around. My husband is an amazing STEP father. I have to emphasize STEP because Cameron refuses to let anyone make the mistake of referring to my husband as his father. STEP is immediately added to the definition of what kind of father my husband is. But it is definitely a step in the right direction. I’m not sure where my son would be in life, if it weren’t for the influence my husband has had over him, and over me. Way back when my husband and I started dating, Cameron’s diet consisted of two food groups: yellow and white. That would include macaroni and cheese, chicken nuggets, grilled cheese, and the like. There wasn’t much in the way of fruits and vegetables (even yellow or white ones). But thanks to the impartial influence of my husband, Cameron was exposed to more and more mealtime diversity. It didn’t always make for a pleasant dinner, but like a single raindrop starting the Grand Canyon, gradually my son became a “try anything on your plate” kind of guy. Just as I never thought I’d see the day when my son would willingly eat a salad, I never thought Cameron would ever be able to master riding a bicycle. He was uncoordinated and fearful when it came to trying. My son’s reluctance, though it was great, was no match for my husband’s patience. Back when they were going through the daily drill of learning to balance without training wheels, I was the one making that sucking sound. I felt the need to explain to my husband the ins and outs of sensory integration disorder, midline issues, and all those buzz words I picked up after years of Occupational Therapy. I was willing to give Cameron a pass on learning to ride a bike, because I was convinced he couldn’t do it, and mothers know best, after all. But guess what? Cameron quickly learned to ride on his own, and today riding a bike provides Cameron with the ability to go out and about in the community on his own. My husband has positively influenced my parenting of Cameron in countless ways. But what if I hadn’t been so lucky? Would Cameron still be eating only mac & cheese for Thanksgiving? Would he not have the freedom he enjoys today of being able to experience our nation’s capitol on his own? As I reflect back on all the positive influences my husband has made, I’m left wondering how much of our behavior as parents is shaping the behavior of our children? Are our children learning to NOT do something they’re perfectly capable of doing, simply because we as parents are inadvertently sheltering them from trying? Sometimes it’s the parents that need the support, as much as the children. Wouldn’t it be wonderful, if when we find our resolve being worn down, and we’re tempted to “give in” because it will be so much “easier” on everyone, we could tag someone in our corner to step in and hold the course? While it’s tough asking for help as a parent, it’s even tougher to accept the help we didn’t ask for. Sometimes it takes a step in an unexpected direction to find an easier path.

First published November 7, 2011.There have been times in my life when I would have given anything to have a peek into a crystal ball. I find this transition phase of Cameron’s development to be such a moment. I’m one to those people who need a plan. I obsess over details of that plan, and see it through to the bitter end. I’m finding myself struggling to make a plan for Cameron’s future, even though I so desperately want to. If I could just peek into a crystal ball that would show me what Cameron will be like three to five years down the road, it would make life so much easier!You would think that being the parent of a child with disabilities would require that I develop a fair amount of patience along the way. Not so much, especially when it comes to planning Cameron’s future. Having the vast world of the internet at my finger tips has not helped matters. I find myself Googling the most obscure things in an attempt to find a clear path for Cameron. Just for example’s sake, I’ve found myself researching: course offerings from community colleges, US News & World Report’s college ranking website (for highest acceptance rates), and car safety data in the event Cameron passes his written exam and needs to buy a car. I’ve drawn the line at looking up rents for nearby apartments, but there are days when I’m tempted. Of course, this is all rather pie in the sky. It’s not as if I have unlimited access to cash to fund these endeavors. Could I please just have a peek in that crystal ball to see if Cameron will be able to earn an income to support himself? If Cameron can’t get by with the typical amount of support a young adult gets from their parents, then what? Will postsecondary education provide him anything more than a few schedule entries on the days he attends class? Or will he suddenly experience some sort of developmental milestone, and actually be able access curriculum in a fully integrated setting?It’s interesting how my thought process has changed over the years. I’ve gone from thinking postsecondary education would be a wasted effort for Cameron, to considering the possibility of him attending a four-year college as a non-degree seeking student. But as my path matures, it makes me that much more anxious to see where it will come out. I realize even a crystal ball affording me a peek into the future might not be enough to squelch my anxiety. I’m probably looking for something more along the lines of the Gwyneth Paltrow movie, Sliding Doors. In this movie, we get to experience two versions of the heroine’s life based on dumping the loser boyfriend or sticking with him. Wouldn’t it be grand if we could see how our futures would be altered for all those major decisions? Would paying for a couple of years away at “college” help Cameron grow socially, emotionally, and academically? Or would the money be put to better use spread across more time while he lives at home?Ah well, if this were a Hollywood production, it would have plenty of potential for sequels. But alas, I must make these decisions without a crystal ball and without a Hollywood ending. I’ll just have to make do with good old fashioned gut instincts. Wish me luck!

First published on October 3, 2011.If you’ve read any of my previous columns, you’ve probably earned the right to be on a first name basis with my son. My son’s name is Cameron. And WE are transitioning. As a part of transition, Cameron’s school places its eleventh graders in workplace internships to learn and develop valuable job skills. Cameron’s dream, Cameron’s whole purpose for being according to him, is to own a pizza restaurant. He’s developed his own secret recipe, which he’ll gladly share with you, if you ask him. He also came up with a name for the restaurant, but it’s not entirely appetizing so I hope he’ll change his mind on that one. The ideal internship for Cameron would therefore be at a pizza restaurant. Where to begin? Anyone who has known Cameron for more than eight hours will soon realize that he is very motivated by food. (Not too unlike my labradoodles, but I’ll stick to the topic at hand.) If you want to start a conversation with Cameron, food is a good starting point. You will quickly learn of Cameron’s pizzeria dream and his secret recipe. My next door neighbor has known Cameron for more than eight hours, and happened to have a real estate client who leased a space to that would become a pizzeria. My neighbor (without prompting or begging from me) spoke to his client about Cameron, and passed on contact information to me. I then contacted the client who was happy to give Cameron an internship. There was a catch: the restaurant—though only a mile from home—was 15 miles from school, and the internship is to take place during the school day. Luckily, as a byproduct of summer camp, Cameron mastered public transportation, and was more than willing to spend an hour on a bus and Metro train in order to work in a pizza restaurant. The teacher responsible for organizing internships was thrilled to have Cameron in a placement that thrilled Cameron, and was more than willing to do travel training with him. All the pieces fit together, and I have never seen such enthusiasm from Cameron. On school holidays, when interns traditionally take the day off, Cameron seeks additional hours at the restaurant. The moral of this story is that this placement at Angelico Pizzeria did not just happen. People who know Cameron wanted to help. Even people who didn’t know Cameron wanted to help. It took a whole cast of characters including a neighbor, a business owner, a teacher, and a willing student to make this scenario work. I didn’t start with a Google search for “pizza internship for ASD student.”  I didn’t wait for his school to develop a relationship with a pizza restaurant close to school, and have him work in the assisted living cafeteria in the meantime. Sometimes you just have to push up your sleeves and see what you can make happen. If I’ve learned anything on our transition path so far, it’s that you will need help from various villagers from time to time. The transition path isn’t clear cut, and many hands make light work. Fortunately, most of the villagers along the way are friendly and helpful in countless ways. It’s also fortunate that Cameron does not aspire to be a rock star. Finding an appropriate internship in that case might have required more than a village.

Cameron is a source of unending surprises. I am constantly surprised by his ability to answer the most open ended questions imaginable with a one word answer. To say that making conversation with Cameron is a challenge is like saying … well, it’s like saying good metaphors come easy to me. But you know what? Cameron can hold his own in a conversation! I’ve seen him do it. He just does it for other people, and not his dear old mom. Huh. Go figure. And here I thought I was very pleasant to talk to. Cameron is participating in a leadership program sponsored by Special Olympics and the Gallup organization. The purpose of this program is for students (or athletes, as they’re referred to by Special Olympics) to learn their strengths, and capitalize on those strengths by putting them to good use. Each student/athlete is paired with a Gallup professional as a mentor, and over the course of seven monthly meetings, they work together to identify and develop the athlete’s three core strengths. The culmination is a presentation in front of a sizable audience where the athlete explains what their strengths are and how those strengths define who they are. It’s such a great opportunity. I attended the first meeting with Cameron this week, so that I could make sure he knew the route next month when he goes on his own. (Ahem … I got us off at the wrong stop. Cameron would never have made that mistake, but I digress.) The first part of the meeting was eating pizza, so Cameron had that one down, no problem. The second part of the meeting was introducing yourself to the group by including something about what you like. I sat on the other side of the room dreading Cameron’s turn. I knew he would say something like, “I’m Cameron” and wait for further prompting. I was tempted to text a script to him, but his mentor was right next to him, so I knew I’d get busted. When it was Cameron’s turn, I couldn’t believe my ears. A whole entire PARAGRAPH came flowing from his mouth. He stated his first, middle and last name, and explained that through his school he had an internship at a pizza restaurant. He went on to explain his lifelong dream of owning a pizza restaurant and that he hoped by participating in this program he would be better prepared to be a business owner. It took every ounce of restraint I had to not jump up and do big “Woot! Woot!” in the middle of the conference room. Of course, to everyone else in the room, this introduction of Cameron’s was no big feat, because everyone else was doing the same type of introduction. But they don’t know Cameron like I do. This was not the first time I was caught off guard by Cameron’s communication skills. The Smithsonian summer camp he attended required an interview as part of the application process. Again, I was a nervous wreck over the event. One of the people interviewing Cameron had a service dog, and I was sure this would distract him, and he might even make an inappropriate comment. Surprise Number One that day was that he didn’t even seem to notice the dog in the room. Surprise Number Two was when he started answering questions about himself. Again, he spoke in paragraphs, and not one-word answers. At one point, he looked at me and asked, “Did I say something wrong?” I guess I had this look of shock on my face, and he didn’t quite know what to make of it. I’m left wondering what else lies beneath the surface of my darling son. I’ve said “they don’t know Cameron like I do,” but do I know Cameron like they do? I think this becomes the challenge most parents face. How do our kids act when we’re not around? Do we give them enough opportunity for being as independent as they can be? Are we subconsciously prompting for behaviors that don’t happen unless we’re around to unknowingly prompt for them? I’m happy to say that so far, all my surprises with regard to Cameron have been pleasant. I hope they stay that way.  

They don’t call it a “spectrum” for nothing, do they? When it comes to discussing Cameron’s disabilities, I still find myself tap dancing a bit, especially when discussing it with someone within the Autism “community”. When speaking with parents of Cameron’s peers at school, there’s always that point in the conversation where I start feeling out their child’s capabilities as compared to Cameron’s. It’s not intended as a competitive comparison, but more of a need to find a baseline for where Cameron is compared to the herd. It’s inevitably a delicate conversation, because I feel I’m either going to be crushed by the realization that Cameron is far behind the curve, or I’m going to crush someone else when I highlight Cameron’s high degree of independence. When I read columns written by my colleagues at Autism After 16, I identify with bits and pieces, but usually am left comparing where Cameron is to the writer’s subject matter. Cameron is usually so far off in one direction or another from any other ASD person that I’ve started referring to it as the Autism “Galaxy” as opposed to “Community.” I often feel Cameron is on a planet of his own in this galaxy. He’s like Pluto. Adorable, just like Mickey Mouse’s dog, but sometimes a planet, sometimes not, just kinda hanging out revolving around the sun, but at a much slower pace than those of us here on Earth. Coming from a planet of one, it’s impossible to find someone that speaks your language. But he’s adapting, as best he can. I’m no space explorer, but I suspect there are hundreds of planets in this Autism Galaxy, all very different from each other. So what is there to learn from the vast differences I see among the planets? It’s much more than, “Man, I’m glad I don’t have to go there!” or “Wouldn’t it be nice if we were there instead?” Perhaps interplanetary travel will facilitate relocation to different planets. Have I run this metaphor into the ground yet? Or am I digging myself into a black hole? My point is this: The more we talk to each other, the more we can learn. But in order to learn more, I realize I need to push myself beyond that social awkwardness and have the conversation without fear of offense. I don’t know that I would’ve realized that, had I not started this writing gig with AA16. In my enthusiasm for this website, I find conversations gravitating towards the issues facing the Autism Galaxy more and more. I feel a certain sense of relief coming from both sides of the conversation as the discussion takes place. Whereas before, it was a little like discussing religion or politics, now it’s more of an empowering feeling. Someone in the conversation has inevitably been there and done that, and the other participant in the conversation always welcomes details about that experience. But if I hold back, and fear I’ll appear less than adequate as a parent, or as a pushy know it all, I might as well be on a planet by myself. And what fun would that be?  

I just finished reading the phenomenal debut novel by Tom Rachman entitled The Imperfectionists. I found myself particularly drawn to the following quote by character Oliver Ott: “I mean, we all know I don’t understand this sort of thing. The rest of the family does. But I seem to be missing it somehow. Missing the chromosome for it. The cleverness gene. I’m faulty. So here’s my question, Schop: can I be blamed for my defects? I mean, are my faults my fault?” While Oliver is never identified by any diagnosis, he clearly struggles with social anxiety. His only friend is his basset hound, Schopenhauer, and Oliver doesn’t understanding why he struggles as he does, nor can he convey his anxiety when the situation demands it. While experiencing his character development in the novel, I was reminded of the new IEP goal I requested for Cameron recently. I strongly believe that in order for Cameron to have any chance at independence, he needs to understand and verbalize the challenges he faces because of his disabilities. When you think about it, knowing one’s strengths and weaknesses is crucial to anyone’s success. It therefore surprised me that my request seemed to be perceived as a unique goal to include in an IEP. I also asked Cameron’s psychologist to help Cameron formulate a way to communicate his challenges. The psychologist was going to ask for input from colleagues on a good approach. Why is it such an extraordinary request that Cameron understand himself? Someone going to Weight Watchers gets bombarded with information on the causes of obesity and how it’s combated. An alcoholic joining Alcoholics Anonymous quickly learns character traits he has that contribute to alcoholism. So why aren’t people with learning disabilities automatically taught the same sort of self-awareness? Perhaps, and don’t hate me for saying this, but perhaps in our efforts to be inclusive with this population, we have overlooked the need for the population to understand what makes them different. Perhaps we’ve tried so hard to make them just like everyone else; we’ve forgotten to bring their attention to their unavoidable differences. Or maybe we’re essentially saying, “You have autism, so there’s no way you can understand what it means to have autism.” I hope that Cameron will learn to understand that his brain works differently than most people’s. And as he becomes aware of his differences, I want to assure him his faults are not his fault, as Oliver pondered. Let me be clear that I see self-awareness as a means of Cameron asking for support, but it is not a crutch. In other words, Cameron can’t let “I have autism” become an excuse for not learning nor for avoiding self-management. But, maybe if he reaches that IEP goal, Cameron will someday be able to say, “I’m sorry but I have language issues. Would you please speak more slowly?” At the very least, I hope Cameron will learn to ask for help and not be embarrassed by needing it.