Commentary

I tiptoed out of the living room, hoping to switch my laundry from washer to dryer without the two children noticing my brief absence. I was babysitting at a friend’s home, watching a 3-year-old and 1-year-old in exchange for use of the laundry facilities. Eliza, the 3-year-old, was looking through a book, and her younger brother, Mitchell, was avidly watching her. It seemed an opportune moment to slip away and into the next room. 

But alas, my plan didn’t work. Before I’d so much as opened the door to the dryer, Eliza appeared beside me. Predictably, Mitchell started wailing; he hates to be left alone, and now he had neither babysitter nor sister nearby. He’d probably start crawling toward us momentarily. 

I stood next to the washing machine and sighed. Should I run back to comfort Mitchell, or just transfer the clothes as quickly as possible? I chose the latter, moving my arms as fast as I could. Eliza helped me load the damp clothes into the dryer as she had in the past. I knew that she liked to help her mom with household tasks, so I included her in my laundry. But Mitchell’s cries grew louder and more frantic. He didn’t want to be left alone, and I didn’t want a meltdown. 

As though reading my mind, Eliza said, “Why’s Mitchell crying?” 

“Well, honey,” I said, “He doesn’t want to be by himself. And since we’re both over here by the laundry, he can’t see us, and he’s upset that he isn’t with us.” 

Eliza’s face was focused, concentrating on my words. “Oh,” she said. 

An idea sprang to mind. “Thank you for helping me, Eliza. You’re such a good helper. Do you think maybe you could go play with your brother now? I think that would help him to feel calm.” 

It was a good idea, but I hesitated to voice it. I’m accustomed to asking adults for help, but it felt strange to be asking a 3-year-old to assist me. Was it too much to ask of her? Would she resent the request? 

In the past, I’d seen her get upset when Mitchell took her toys or invaded her space, so I wondered if she’d react negatively to this request. But as it turned out, I needn’t have worried. She replied with a cheerful “Okay,” taking the suggestion in stride. In fact, she (literally) ran with it. Dashing around the corner to the living room, she disappeared from sight. As she vanished, I felt a sense of solidarity with her. I felt like I was standing in my mother’s shoes, asking my younger self to help my younger brother Willie

As I saw Eliza run over to Mitchell, I could imagine myself racing toward Willie at that age. Even then, I knew what Eliza knew: that when my younger brother needed me, I went. Whether your sibling has special needs or not, being the oldest means stepping up. It means that you know early on how much your sibling needs you, though you may not yet realize how much you need them. So, although I knew she couldn’t fully understand my words, I wanted to tell her, “Honey, welcome to the club. Welcome to a thousand more requests just like this one. Welcome to the rest of your life. You will never stop being the oldest; it is part of who you are. And no matter what, a part of you will always want to take care of your brother, and a part of him will always look up to you. Even if you live 1000 miles apart, even if you fight and argue and resent each other sometimes. Deep down, none of that matters. You’ll always be connected.” 

From where I stood, I could hear Eliza’s voice in the next room. She spoke to her brother gently, saying, “Hey buddy, what’s wrong?” Within seconds, Mitchell’s sobbing ceased; now I was the one with tears pricking my eyes. I peeked around the corner to check on them; they were playing together contentedly. I finished tossing my clothes into the dryer. “With great power comes great responsibility,” I murmured. And I knew it to be true. 

I have a really nice desk in my office. It looks exquisite, and it's ready to hold my papers and serve as a great platform to work on. 

As soon as I finish building it, that is. 

I've got the first couple of steps done already, having screwed together some panels, hammered little “feet” onto others and glued some dowelettes into some holes. 

Now for the next 20-plus steps!  All the supplies are there. This is a perfectly structured process, great for us Aspies. The booklet, as far as I can tell, gives very good step-by-step instructions. 

Thing is, I just have trouble seeing myself finishing the desk. I try to anticipate every possible problem that might come up. Anticipating problems is great when you can plan for them. However, when your brain comes up with nebulous possibility after nebulous possibility and doesn't even fill in the blanks on one fantasy before moving on to the next, it's a different story. 

When you're like a computer whose owner has tried to simultaneously run 15 different programs (not counting a browser with 40 separate tabs) and then stream an HD video, no wonder your mind gives you the metaphorical Blue Screen of Death once in a while! 

As an Aspie in a country governed by certain disability laws, I can ask for reasonable accommodations, including upon occasion being allowed to consider issues one at a time. That is, I can ask other people to let me single-focus where feasible. 

But what happens when it's my own imagination? Our laws are pretty enlightened, but even so I suspect that if one half of my grey matter sued the other half for, say, violating the Americans with Disabilities Act, I'd probably get laughed out of court. 

In an episode of “The Honeymooners,” Ralph Kramden talked about how his father had given him a cornet that he never learned to play well, and he always wanted to “hit the high note.” That was his metaphor for his difficulties finishing what he started—in this case, actually getting a civil service job he applied for. 

Boy, do I empathize with that. People have lots of reasons for not always finishing what they start—and sometimes they're good reasons. What we often don’t realize is that many people need to build their skills in effective task completion. This can be especially true for Aspies. We sometimes need more time to process things—in part because our imaginations don't always give us the full versions of their scenarios the first time around. It's a bit like the Cheshire Cat ... one part comes in at a time. And heaven knows I've had enough problems with impulsive decision-making—impulsive not because I made certain decisions quickly but rather because I made them with very incomplete knowledge of their implications.

As for my desk, I'm just going to get back to building it and handle any issues as they come!

Winter break was too long. And summer break is coming too soon. 

The month between mid-December and mid-January, when all three of my children were home on college break, was chock-full of celebration, family time, visits from friends and general merriment, interspersed with the sibling squabbles I haven't missed since my nest officially emptied in September. For my oldest two, the vacation was a much-needed rest from a flurry of final exams and papers. For my youngest son, Reilly, it was a month with too little of the structure that young people on the autism spectrum need in their lives. 

Reilly is 19 and in his first year of a postsecondary program for ASD students at the New York Institute of Technology. The first semester was a mix of pre-college academics and vocational and life skills training that seem to be a good fit for him now. He has friends, useful classes, and a predictable schedule on which he thrives. 

Like his older brother and sister, Reilly spent much of his winter break staying up until the wee hours of the morning playing video games, or doing whatever it is older teens and young adults do in the middle of the night, and sleeping until early afternoon. Personal grooming—never top on Reilly's to-do list—dropped to bare minimum, if that. “Why should I shower? I'm not leaving the house today,” he reasoned. “Because you smell!” I argued. Shaving? Until the end of the break, he led us to believe he had left his electric razor back at school. (And who shaves while looking into his iPhone camera instead of a bathroom mirror? Well, Reilly.)

I envisioned the break as a chance to do some trouble-shooting with Reilly, encouraging him to practice skills he was learning at NYIT, to get better at taking his medication and generally taking care of himself. He saw it as a break from all of that, a chance to veg out for a month. I made sporadic efforts to engage him in my agenda, but mostly I took the easy way out, letting him sleep and, well, whatever. 

The older two happily traipsed back to school a few days before Reilly's break was over. In the week before he left us again, Reilly grew crabbier and more oppositional. I remembered, after a few skirmishes over things like brushing his teeth and changing clothes and whether his father and I were both going to take him to the airport, that transitions are hard for him. 

Luckily, spring break is only a week long. But then we're staring down the barrel of summer. Reilly has spent most of the last two summers at NYIT's program for high school students. My husband thinks Reilly should come home for the summer and, hopefully, get a job. Sounds like a tall order to me. Where will he work? How will he get to a job since he doesn't drive yet? Will he regress again to the child who depends on me to nag him to go bed at a reasonable hour, get up in the morning, shower, eat sensibly and take his meds? It's clear that growth isn't going to happen back here in the nest. 

I spend time googling summer options for college-age kids with ASD. Not much there, and what is there is expensive. I'll keep looking. 

Meanwhile, Reilly arrived back on campus in a good mood and excited about the new semester, texting me with his spring schedule and the news that he's taking a college-credit history course with three of his best buddies. And he wants to bring a friend home for spring vacation. Maybe it will make his transition smoother. Could be a good idea.

In six short weeks, my son will have reached the age of 18. I cannot believe this day is upon us. It seems like just yesterday I was trying to assess whether or not this IEP I had been handed for my 4-year-old was really necessary. Thankfully I've long evolved from my Queen of Denial mode, but I really can't believe how fast Cameron has grown. 

But now, with the age of majority upon us, I feel as though I'm dreadfully behind. There are so many things that need to be decided and dealt with, yet none of them are much fun, or all that easy. I spent 35 minutes on hold last week with Social Security trying to set up an application appointment for SSI. If you don't know what SSI is, you're not alone. It stands for Supplemental Security Income and is a program which pays benefits to adults and children with disabilities that have limited income and resources. The assumption is that Cameron won't be able to support himself financially, and SSI is a way to fill in the gaps. I guess my goal, or my hope rather, is that Cameron will qualify for support in the short-term, and will be able to earn his way out of qualification in the long-term. I believe that Cameron's earning potential in its own right will keep him out of poverty. But this program will certainly help in the meantime, because Cameron is a long way from being able to earn the income he will need to be self-sufficient. 

So after a 35-minute hold, while I was simultaneously entering information on the Social Security Administration's website, I was told that the office we need to go to did not have their calendar available to schedule an appointment. Someone would call me back within a week, or if not, I should call back. (Being on hold for 35 minutes was so much fun the first time, why wouldn't I want to call back?) But just because it's a pain, I won't be discouraged. The website contains much valuable information and it's certainly worth the aggravation if benefits are available in the end. 

I was ahead of the game when it came to local vocational rehabilitation services. Cameron applied for these services through his school (but it took some prompting from my end to make this happen.) Cameron qualified for services with this agency, which will help with postsecondary programs and job skill training. 

What surprises me as I meet with other parents in the same situation of having a transitioning young adult with disabilities is how little we all know about how the process works. There are services out there, but there is no straightforward path to getting these services. At least, not that I've heard of. It really takes advocacy on behalf of the individual, whether by a parent, guardian, teacher, or some other interested party. Someone has to move the ball forward, because it will not move on its own. I personally believe the process should be easier and more automatic, but that's just not how it works in the real world. Since the day Cameron was born, I've known when his 18th birthday would be. So why do I feel so unprepared? Maybe my friend, the Queen of Denial, has been with me all along.

Now that I’m home full time with Cody, it has given me great opportunity to work with him more on the daily living skills he needs to learn.

Bill and I have always assisted him with showers, but more and more I have been relinquishing control to Cody. I’m finding I no longer have to worry about him using a half a bottle of shampoo on his hair and with some hand over hand assistance he’s learned to rub the shampoo in circles all over his head instead of just in one small area, leaving Bill or me to do the rest. He has also become quite insistent upon me only helping him wash his back. The rest he wishes to do himself.

Cody has graduated to doing many tasks with one prompt only. Taking his dirty laundry to the hamper, brushing his teeth, getting himself dressed in the morning and bringing his dirty dishes over to the kitchen counter are all pretty much routine now.  But there are still those things he needs broken down into steps.

I still have to verbally prompt Cody on each step of getting the dishes from the kitchen counter to the dishwasher, which goes like this:

  1. Ok, Cody. First we take the dish cloth.
  2. Then we turn the faucet to warm.
  3. Now we put the dish under the water and keep it there.
  4. Now use the dish cloth to wipe away the food on the plate.
  5. Now put it here, in the dishwasher.

During this process I must point to spots missed and sometimes it requires numerous prompts.

He has done fairly well at making his bed, but now we are working on perfecting his technique. This is something we are doing together for now. While Cody is on one side, I’m on the other. Again I make it a very specific process.

  1. Ok Cody, let’s pull the covers back and smooth out the sheet.
  2. Now let’s take the corner of the top sheet.
  3. Let’s pull it to the top.
  4. Pull it tight.
  5. Get the wrinkles out.
  6. Now take the corner of the blanket.
  7. Let’s pull it to the top.
  8. Pull it tight.
  9. Get the wrinkles out.

We repeat this process with the quilt and the comforter, and then we make sure the pillows are placed at the top, neatly.

Dusting is a bit more tedious. Once Cody has everything off of his dresser, it’s not so much of a problem. But for some reason getting him to understand that everything must be off the dresser to do it properly seems to be a bit of a hill to climb. I find I have to prompt him several times to take all of the items off before he begins dusting. I was pleasantly surprised however, that he recently used only a modest amount of polish. There have been times when we would have needed a bath towel to get all the polish off if someone were not available to say, “Ok! That’s enough!”

We’re still working on making a telephone call. Sometimes it takes several tries to punch in Bill’s cell phone number. And patience to push only one number at a time is something that causes Cody frustration but he’s getting a little better at it each time he does it.

I don’t find it difficult teaching Cody these tasks and from where I stand I feel it’s fairly plain to see he learns quite well through daily repetition. But, one skill where he seems to have a huge hurdle to clear is the art of communication with others. He understands what others tell him. And he talks all the time—sometimes nonstop for hours. But others have no clue what he means when he speaks.

Our meeting with Cody’s service coordinator at the learning facility I spoke of in previous columns was pushed back. But it appears that speech pathology sessions are out of the question at this time. Even on a sliding scale they are more expensive than what we can afford, for now. So I’m researching any free resources I can find online that may help.

Today, we will meet with the Behavioral Analysis Team. I’m hoping and praying they can lead us to ways to teach Cody how to engage in proper conversation. I know the key to unlocking this skill is out there. But sometimes I feel like I’m searching the whole ocean to find it.

My parents are always reluctant to tell me that Willie’s had a hard time. They want the best for us both; they want him to have good days, and they want to spare me the difficult details. But I’ve been there during the worst of Willie’s meltdowns. I know how stressful, frustrating, and draining it can be to support someone who’s determined to hurt himself and others. At times Willie’s behavior seems willful; at other times, involuntary. Regardless, the fallout is the same: Willie wrapped in the living room rug (which provides a sense of calming pressure), and weeping because he feels terrible about having lost control again.

It’s a strange role, being the sister and sole sibling in these situations. In one way, I’m Willie’s peer, the person he names first when asked if he has a friend. I love and accept him as he is and want him to have the best possible life. Yet at the same time, I’m also connected to my parents’ perspective, trying to help Willie. When my parents talk about Willie with me, I hear how proud of him they are; as my mom noted recently, “He’s been doing so well with his weekly piano lessons, and he’s playing pieces at church for the special music section of the service. Those are things I only dreamed for him, and now they are happening.” So I know that they realize how far Willie has come in the last few years. All of us cherish these hard-won victories.

That said, I also hear the discouragement in their voices when Willie has yet another major meltdown. Even as they do their best to stay positive, they have to be realistic, too. For example, I hear their concerns about traveling, about bringing Willie with them on a plane ride. These worries are well-founded, because of what’s happened on plane rides past. (Imagine trying to calm a tall, strong, autistic young man having a meltdown in a middle seat. Picture him frantic to get out of his row as the plane starts its descent; you do your best to help him calm down even though he’s taking swings at you, as fellow passengers and concerned in-flight attendants look on.)

Yet even so, my parents and brother are scheduled to travel together for a long-awaited visit with my husband and me in Alabama in April. True, they will be taking precautions: They’ve consulted with Willie on their itinerary, and chosen the shortest possible flight and a longer drive rather than a change of planes, but still. They are brave to attempt this at all. No, they are downright heroic.

I love to “dig for treasure” in the small moments of the everyday, but sometimes I wonder: Has any “significant” progress been made? Will Willie ever be through with his aggressive and self-injurious behaviors, or will it be a lifelong struggle for him (and for us)? These questions led me to wonder: What were we dealing with at this time last year? Were we hopeful? Discouraged? Full of curiosity, I paged through the Autism After 16 archives, and came upon “The Mystery of the Fleeting Expression,” published on February 2, 2012.

In that piece, I quoted Dr. Darold Treffert, who said, in an interview about autism and savant syndrome: “In watching caregivers over the last few decades, I've witnessed the power of care and love and concern ... I've learned as much about that as about synapses and neurons.”

His words seem all the more appropriate and resonant now. I share his sense of wonder, because quite simply, I don’t know how my parents do it. I don’t know how they put one foot in front of the other and carry on. And sometimes I don’t know how I keep writing about it all, seeking sustenance in telling true stories. But then, what’s the alternative? Giving up? As challenging as loving Willie can be, there is no other viable option. And that—the very absence of choice—is strangely helpful. The only way out is through, and we are being transformed along the way. Through we have gone for a decade, and will continue to go.

As you all know, I have been preparing for a life as a professional writer for quite some time now. I have practiced writing in various forms, and I am going to take some elective classes this spring and summer to further refine my writing skills. Much of my writing is a work in progress. I have, however, recently decided to try and tackle a children’s book, and I am now applying the finishing touches to it.

This big project I am working on was inspired by a conversation I had with one of my relatives in which I promised to give her a copy of the first children’s book I wrote. After talking it over with my mother, I decided to write a book for my two cousins who are still very young and will soon be learning basic social skills. The story would help them to learn about cooperation and how working together can be fun. I drew a bit on my own experiences learning about these same social skills which I struggled to master for many years. The text was a bit tricky for me at first because I do not normally speak, write, or think like this every day, but I got used to it, and I found it easier to write in this style as the story progressed.

After hammering out a simple storyline for the book, I began collaborating with my mother on the details for the book’s illustrations which will complement the text. I relied on my mother for the drawings because I knew I would have a hard time creating them on my own. I have always had issues with activities involving fine motor skills including drawing, so I appreciated the help. My mother and I shared ideas regarding the illustrations, but I had the final say on each page layout. Luckily, my mom’s drawings came out very similarly to how I saw them in my head. Actually, in some cases, the drawings were even better than what I had originally conceived. Between my ideas and her drawings, we created pictures that perfectly complemented the story I wanted to tell.    

Working on this story helped me to practice expressing specific ideas in a controlled manner which could be understood by other people. Because of my autism, I often think of things only from my point of view and my level of experience. My cousins are much younger than me and, consequently, have not seen a lot of the world yet, so I had to keep my ideas and their expressions simple. I worked on using people, places, and things which would be familiar to my cousins and making the storyline easy for them to follow.

I am proud of the work my mother and I have put into making this book possible, and the results look very promising so far. I hope my cousins and their families will enjoy it and the lessons it conveys. I also think this book is an important first step in my becoming a full-fledged author. It has given me more ideas about stories I could do with my cousins as characters learning about other social and life skills. I could do an entire series of books based on these premises and those in turn could possibly lead to spin-off series and other types of stories, feeding back in on themselves and transferring to new genres. This one story has opened up a whole universe of new writing possibilities for me. It feels good to create.  

Tomorrow is the day. I hope I'm ready for it. Nine of us will gather around the table and for one last time make a set of goals for Madison. 

It is the day of her last IEP. 

I understand there will be one more "close-out" session as she transitions into her adult programs. But this is the last time this group with this purpose will gather in support of my Madison. 

Soon she will be 21, so her IEP (Individual Educational Plan) will become her ISP (Individual Service Plan), I'm told, and different folks with different goals will sit with me next year. I wonder how much it will change. 

But first, there is some paperwork to attend to. 

"Fill this out and bring it to the meeting," a services coordinator representative told me. "Madison will need to sign it." 

I swallowed hard at the kind voice, knowing she had no idea the nerve she hit. Madison can't sign her name. Madison can't write. Madison can't read, either. 

"Oh, so she's illiterate," one government employee had clarified to me in one of the application processes. 

"Well, I’d never thought of it that way," I said to that cold voice. "But I guess she is." 

But it is not for lack of trying. 

We caught her delay early, at nine months, and immediately started services. Now, I realize that they were probably not the correct services for autism, but that was all we had at the time. 

We had in-home speech therapy, occupational therapy, and then specialized toddler programs, both group and individual. Then the IEPs began—14 years of them—documenting her progress and changing needs as she moved from school to school in search of the appropriate program to meet her needs. 

The faces changed around that IEP table, but not their focus. Granted, we had a few disagreements along the way. But I found if I kept the discussions Madison-focused many of those obstacles were softened as we, together, tried to set goals that would allow her to receive an education with the abilities that she has. 

To address her writing skills, we were creative. We tried tracing, chunky pencils, rubber bands that wrapped a pencil to her fingers, even hand-over-hand training. But she still could not sign her name. 

Anticipating the drama, I called the school's director and told her Madison would need to sign her name to some documents that were going to be at the IEP meeting. 

"I don't think she can sign anything, can she? Will she have to use her name stamp? Is that acceptable?" I rattled on. 

"No worries," the kind and confident voice assured me. "Whatever she signs is her mark. It is enough." 

As I hung up the phone, my eyes welled at her words. I opened the Madison file drawer and looked back over the 14 years of IEPs. 

We tried. We tried hard. And, it is enough. 

Madison is happy, healthy, and knows how to communicate most of her needs. She's knows her colors, shapes, numbers and can sort, count, and follow simple instructions. And, thankfully, she’s learned how to ask for help. 

She may not be able to sign her name but she can sing a song. She can dance. And she can tell you that she loves you. 

It is enough.

Sometimes we parents can learn a thing or two from our children. I am surprised at how much Cameron has taught me about frustration tolerance. I don't mean this in the way that my sense of humor normally would interpret "frustration tolerance" when if comes to raising children. Cameron has not frustrated me to the point of me needing to learn tolerance. No, Cameron has suffered a string of frustrations lately, and I have learned by watching him, how to handle my own frustrations. 

Last week, I wrote about Cameron's frustration with sharing a bathroom with the entire family. This has been just one of the many frustrations he has had to deal with of late. First of all, it's probably best to explain Cameron's typical daily patterns: He starts each day by checking the weather on his computer, and then makes breakfast which typically consists of a couple of microwave sausages (he loves sausages) and a bagel. After school, he spends some time on his computer, sometimes watching a movie from his expansive iTunes library. A few times a week he rides his bike to the gym, and has a weekly personal training session with a much-loved trainer. And of course, there's work on Friday and Saturday, which he also rides his bike to. It's a pretty simple life, and that's just the way Cameron likes it. 

Then things started to go wrong: He updated his iTunes software, and suddenly his movies stopped working. On the way home from the gym one day, his bike got a flat and the brake locked around the tire rim, so he had to drag his bike all the way home. His stepdad was out of town, so he had to wait several days before the bike could be repaired. After weeks of back and forth with iTunes support, we were finally on our way to sorting out his video issue, and an electrical surge took out his computer entirely. That same surge took out the microwave, making the usual breakfast a challenge. We have a new microwave and a new computer, but we've just learned that Cameron's trainer has left the gym. And then I forgot to buy sausages this week. 

I kept witnessing all these events and thinking what it must be like for Cameron to deal with all this. His only visible reaction would be a once daily question: "Did you hear from the iTunes lady yet?" or "When will Coenraad will be home so he can look at my bike." or "Did you buy sausages today?" There were no temper tantrums. There was no attitude. Just a simple question, trying not to be a bother, but clearly wanting an immediate resolution. 

And then my six-month-old laptop started acting up. I was beside myself. I was soooo disappointed. I had spent weeks doing research on the type of laptop to buy and was sure I had made a sound decision. When something went wrong, it ruined my whole day. (And my husband's too.) As I crawled into bed last night, muttering about how everything I touch seems to break, I thought of all the frustrations Cameron has faced over the past few weeks. I've been dealing with one issue for about 24 hours, and Cameron has been dealing with several issues for a month now. While I can see the frustration is there just below the surface, I'm so proud of how well he is tolerating it. I've told him as much, as I believe it helps him to know that I understand how he feels. He in turn has expressed appreciation for my help with the iTunes issue and in setting up his new computer. In the end, having someone understand that we are frustrated, and why we are frustrated, really helps alleviate some of the pressure. And now, before I forget, I must run to the store to buy more sausages.

I have received several calls of late from parents responding to me finishing my coursework for my Master’s in Strategic Communication at Seton Hall in New Jersey. Although the hooding ceremony is not until May it is a tremendous source of relief for all in my family who have been with me for this arduous journey since I was diagnosed at age 4. The look ahead to my future prompts a look backward: Who could have predicted where I would wind up today? 

Could my early testing and diagnosis predict this outcome? Yes, we all strive when we see potential. We often believe that if we work harder and put more effort into something all will turn out well. A comment my mother heard from a lawyer representing a child in special education shook me. The lawyer asked the parents of a child on the spectrum what they truly believed was the possible outcome for their child. The inference being that a child on the spectrum could only go so far with this diagnosis, so what did they expect? 

This led me to a discussion I have been having about my early diagnosis. When I was first diagnosed I took an IQ Test. The test was broken down into several different categories based on performance, resulting in an “IQ score.” The mean score is considered to be 100. A score of over 145 is often considered to represent genius, while a score under 70 is seen as implying intellectual disability. After taking the test, I received a score of 54, which is categorized as “severely challenged.” 

Now a lot of people say young children can’t be tested accurately and that was certainly a factor for me. My mother wrote in her diary that seeing that number which equates with intellectual disability was one of the hardest days of her life. She had contemplated that her only child would not be anything but bright and that number certainly attested to a very different reality. 

This number came up recently because I learned upon completing my Master’s that I received a final GPA of 3.8 on a scale of 4.0 to finish with distinction. 

If I only had one moral to this story I would have to say that you can’t judge a book by its numbers—especially if the book has autism. Most adults I run into today who are out in the workforce express their hatred for tests growing up and I can’t blame them. 

It seems that most tests today do nothing to be friendly toward individuals with autism. Think about how many standardized tests are being given out today. What is “standard” about an individual with autism? 

I have to say how fortunate I’ve been to have the supports I had growing up. I may have never really been able to excel at tests compared to my peers but that hasn’t stopped me from getting to where I am right now. 

My mother’s answer to the parent mentioned above was to give her son a call and note that I would be happy to appear to give expert testimony that a diagnosis of autism is not synonymous with failure. After all, if I could graduate with distinction from my Master’s program after an initial IQ evaluation of 54, one should not let labels or stereotypes of educational capability drive providing opportunities for an adult with autism. 

All of us in our community need to defeat the stereotypes by believing in our possibilities, in our abilities, and then hopefully the funding for job opportunities, services and housing for adults with autism will follow.

I stand in the refrigerated section of Sam’s Club, holding a carton of eggs. I pop it open and inspect the eggs, checking for cracks. Just as I ascertain that there are none—that this is a flawless batch—I hear a voice behind me. 

“Last time I was here I didn’t remember to do that,” the voice says. I turn and see a smiling, older gentleman a few feet away. 

“... And then I got home and I had four that were broken,” he finishes. 

I register what’s been said and laugh, even as my attention turns to the man beside the speaker. Both men have gray hair and slightly stooped bodies, but while the first speaker is simply friendly, the second man is … radiant. Radiant with joyful energy, with enthusiasm. “Hi!” he exclaims. 

“Hi!” I reply, without hesitation. He’s beaming, and I can’t help but beam back. For a moment, we aren’t perfect strangers. We are long-lost friends, thrilled to reunite. 

And at some point in this brief interaction it registers in my mind that this second man may have some form of intellectual or developmental disability. It’s only a guess, and I could certainly be wrong, but he reminds me so much of my friends at L’Arche. It’s not just in his mannerisms or expressions; it’s in his transparency of spirit. It’s the way he feels like family at first sight. 

I remember what the first man said, and reply, “My mom always insisted that I check the eggs before putting them in the cart.” 

My voice is light, but I feel a pang as I say the words. I miss my mother. It’s hard being so far from my family. These men remind me of my father and brother, who go shopping at their local warehouse club on Saturdays. I love that my dad takes Willie with him on this and other weekly errands; it’s an act of love and courage, especially because of Willie’s potential for meltdowns. And I can totally picture my dad having this same conversation with a fellow shopper as Willie stands beside him, and it makes me miss them both so much that I can hardly breathe. 

“Oh, my wife did that too,” says the man, bringing me back to the present moment. “She said the same, but I forgot. She’s been gone … four years now.” 

“Oh, I’m sorry to hear that,” I say. I feel sympathy for this sweet man who has lost his wife. But the unexpected joy I feel in interacting with these two men mitigates the sadness and the bittersweet sense of missing my family. 

I look from one man to the other. Our moment passes; we wave and wish each other a good day. I say, “So good to see you.” I feel silly for saying these words—after all, we’ve never met before—but the younger man smiles at me, radiant once more. Then they turn away, the older man leading the younger one to the produce section. 

As they walk away, I see them more clearly. I’d thought of them as father and son, probably because they reminded me of my dad and brother on their weekly shopping trips. But as they walk away, I realize: they’re siblings. Of course. An older and younger brother, out shopping together. 

As they move away, I wonder about their lives. I wonder if the older brother ever struggled with the idea of accompanying his younger brother through life. I wonder about their connection, if they live together full-time, if they’re the only ones left in their family. 

It’s not reasonable, but I want to follow them and thank them. I want to walk beside them, in their presence, because the gentle way they have with one another gives me hope for my future. 

And I think: Dear God, may Willie and I live to get gray hair and shop at Sam’s together someday.

Slowly, I start pushing my cart toward the checkout. And I realize that the best way to thank these siblings for being who they are is with my life, not my words.

As you may already know, I'm a Toastmaster. I love speaking, always have. Starting in junior high school, I participated in debate—something which surprises probably no one who knows me. In my first few weeks of high school, I voluntarily gave an opening line for a speech, and soon thereafter also voluntarily gave the speech itself. 

A little over five years ago, encouraged by an acquaintance's example, I looked for a Toastmasters club in my community, found one, and attended their monthly meeting. In my very first meeting I gave my “Icebreaker”—the Toastmasters' word for one's first speech in a club. Since then, I've moved to another club on the invitation of a high-ranking Toastmaster. A disproportionate number of speaking champions and Toastmasters leaders come from our club, and I think it's really cool. As far as I can tell, I'm well-liked there—enough to have been elected Club Secretary and Club Treasurer in different years. (The last time I was ever elected to any office was in high school decades earlier, and if my memory serves for high school I didn't so much get elected as volunteer. So I've come a long way.) 

Now I'm thinking of joining a new club, one dedicated to helping people become (better) professional speakers. I've already attended a couple of meetings (and spoken briefly about being an Aspie), gotten in touch with a couple of members privately and played a role at a recent meeting—specifically, thinking up, announcing and keeping track of usage of the Word of the Day. (It was “mnemonic”—and I forgot to use it myself!) And I've been asked to both serve as General Evaluator for another meeting (basically evaluating the meeting as a whole and introducing the individual speech evaluators) and give a speech at another meeting. 

So why am I more than a bit nervous? 

This is a whole new group of people, most of whom (so far) know each other quite a bit better than I know any of them. In fact, I'm definitely an ethnic minority in that club (again, so far) and I'm not so naïve as to assume that these things never matter. As an Aspie, I sometimes have a rough time getting to know new people—even just in the sense of stepping on their (metaphorical) toes as little as feasible. 

If I had a dime for every person who became offended at something I did or said, and paid a dollar for every time I had a fair chance to turn them around, I'd have my Toastmasters dues paid for life. You may have heard of hypertension as “the silent killer” because if you have high blood pressure and don't check yourself in time, you could die suddenly of heart disease or a stroke. Well, for many Aspies including me (and some NTs too), interpersonal conflict is an (emotional) silent killer. Either way, you can feel good without things being good. 

I'm putting all my relatively newly earned knowledge on human relations to the test. Wish me luck!

Things are changing in our household. And if you know someone with ASD, you can probably relate to the fact that change isn’t necessarily a good thing according to Cameron. We’re doing a rather substantial (and disruptive) master bath renovation—and no, I’m not going to go into the “if anything can go wrong, it will” details of this project. I would need an entire website for that. Suffice it to say, I’m typing with my gloves on, because during this arctic blast, right when we think we’re on budget with the renovation, the heating system goes out. This project has taken its toll on the family, but I find it particularly interesting to observe Cameron deal with it all.

Cameron’s primary irritant with this renovation is that he has to share the bathroom he normally has to himself with the entire family. (Trust me, NONE of us are thrilled about that.) Cameron isn’t so concerned about conflicting schedules with bathroom time, as he is about the soap and shampoo being used too quickly. Or someone “wasting” the soap he washes his acne-prone face with by using it to wash their hands. (The nerve!) When I try to explain to Cameron that we use the same amount of soap and shampoo when we’re in separate bathrooms, he doesn’t get it. To him, one bottle emptying twice as fast as two bottles emptying is wasteful.

One good thing has come out of this household upheaval. In preparation for the demolition, I was pondering what could be done with my daughter’s guinea pigs, Janet and Carol. They had resided in our basement, but plumbing work was going to be going on, and I didn’t think they would be happy with all the noise and debris, any more that I would be. My husband started having a conversation with my daughter about her seeming to have lost interest in her pets, and he indicated that perhaps it was time to consider that Janet and Carol would be happier with a more attentive owner. The thought of walking into an animal shelter with an animal—as opposed to walking out with one—goes completely against my grain. So maybe my daughter doesn’t give the pigs enough attention. At least I know I’m taking care of them. I was suddenly struck with a brilliant idea: I asked Cameron if he would be interested in taking on the responsibility for the guinea pigs. And he was. I think he has the same opinion as I do when it comes to returning animals to the shelter, and he was receptive to having Janet and Carol as roommates in his attic bedroom. Cameron is happy to have the company, and I am happy to not need to remind someone to feed them every day.

So sometimes change can be a good thing for Cameron. Admittedly, he didn’t jump up and down with excitement when I first presented the idea of Janet and Carol moving in. But he was willing to try, and that was all it took. Now, when I asked him if he would like to have his room painted an interesting color… that was met with a resounding “NO!” I guess for Cameron, a little change goes a long way.

I have never had any trouble ascertaining what Cody’s needs are in the way of learning or with what he has difficulty. Language and appropriate sentence structure has always been a struggle. The words come out jumbled and sometimes it sounds as if he is complaining about things with which he has never had any experience or things which shouldn’t concern him.

Right now for instance, he has been talking about “the server.” While the words Cody is using are mostly intelligible, the meaning is not. “We would kinser the server," he has said. "We would get him generous. We would get him the colonial marker as a stopper as a force.” What does all that mean?

There are many things which Bill and I have been able to figure out when it comes to deciphering the “Code Talking.” And that stands to reason, as I have lived with this young man since his birth and Bill became a part of his life just before Cody turned 3 years old. But there are still things he says that not even we understand. If we don’t understand what he means when he converses, it must be incredibly difficult for other people to understand what he means.

While ascertaining what his needs are may be relatively simple, figuring out what is causing the difficulty is not so easy. There is much said in the medical community about what these causes could be. I once had the opportunity to stand in on an autopsy. The pathologist was most happy to answer any questions I had. I asked him if he knew of any differences in the structure of the brain in an individual with autism and that of a neurotypical peer. He said there were differences, particularly in the frontal lobe where language and communication is formed. I did some research and other medical publications concurred with what he said.

In my last column I wrote about our appointment with Cody’s new service coordinator. We came away from the meeting with some newfound hope. The service coordinator told us that there are now some instances where Medicaid is paying for speech therapy if one has a doctor’s order. She also said that she had other clients who struggled with language in the same way Cody does and that they were having good results with speech therapy. But she also said that if Medicaid did not feel that progress was being made after a certain amount of time, then the therapy would no longer be paid for. We were able to speak to Cody’s primary care physician and he gave us an order right away. Tuesday we received a call to set up his evaluation.

The service coordinator also scheduled an evaluation with a behavioral assessment team. They will come and observe Cody in our home and then make suggestions as to what other services from which Cody may benefit. We have not received a call from them yet but she says that too will happen.

I also previously spoke of a facility in Springfield where Cody would actually go to learn life skills and continue in academics. It turns out there is more than just one in the area. The one our service provider suggested has smaller classrooms. She stated the people who work there are more trained to teach individuals on the spectrum to learn to adapt to a more independent life in a mainstream world than those who worked in the area of home services. The autistic adults make and sell things. They are active in the community. And the program teaches every day skills one needs to know to become more self-sufficient.  

Today we will be going to tour the facility and meet with those who would work with Cody. I’m anxious to see the facility and learn exactly what they have to offer. I’m excited to talk to those who run the program and to get a feel for the attitudes they truly have regarding the prospects of adults on the spectrum being able to learn new things and become productive members of society. And then I hope to bring good news and hope to others in my next column.

“Let's talk on Skype tomorrow,” my mom says, gladness in her voice. I taught my parents to use Skype recently, and they are enamored of the experience. Imagine—we can see one another, though they're in New Jersey and I'm in Alabama! It is remarkable. 

“But wait,” she adds, “Willie has a Special Olympics skiing practice that night.”

“He does?” I reply. “Wow, I didn't realize he was doing that!”

“Oh yes,” she says. “You know your brother on skis.” 

Indeed I do. Willie and I grew up skiing; our parents had us in ski schools from a young age. In fact, our parents met skiing. That is, they met through mutual friends who had gathered in a ski lodge after a day on the slopes. The rest, as they say, is history. But I must confess: skiing isn't my favorite sport. There's so much effort that goes into it. One has to drive several hours, don innumerable layers, buy lift passes, fumble with heavy gear, and sit on a chilly chairlift with increasingly numb hands and feet. But to the true devotee, none of this matters. All that counts is the feeling of the crisp winter wind in one's face, the swift speed of snow under one's feet. It's true, it is a rush. And one of my favorite things about skiing was—and is—flying down the mountain with Willie. 

Willie was always the trail-blazer on family skiing trips. Even though he was an “amateur” skier, my parents (“professionals” by comparison), had trouble keeping up with him. He was fearless; he'd point his skis directly downhill and let the speed carry him away. Willie knew how to ski “properly”; he knew how to turn, but he chose to take flight. Yet interestingly enough, when Willie grew older, his skiing changed too. He became the slowest skier in our family, taking each turn with a pain-staking perfectionism. I remember coaching him to pick up the pace, urging him to keep up with me. What a reversal it was—almost as dramatic as the concurrent personality change from happy boy to antagonistic adolescent. 

Even so, Willie's brazen skiing days made their mark on me. He challenged me to pick up the pace in my own skiing, and in the rest of my life as well. For example, I had a new Kindle Single, I Was a Stranger to Beauty, published by ThinkPiece Publishing this week. The Single is about my family's experience with Willie's behavioral challenges, and our journey to love and accept him as he is. Throughout the publication process, I have been both nervous and excited, wondering how the book might be received, what people would think of this intensely personal account. But whenever I'd start worrying too much about the reception, I'd think of Willie skiing and smile. I'd think of my brave brother, daring to be happy and free. 

One specific instance stood out in my mind. On this long-ago day, I stood atop a rise on a ski-trail, lined up with Willie and another family friend; we were getting ready to race. Willie was eager to take off, but he also loved the competition, the prospect of racing against us. His smile told me as much. I remember seeing him pull ahead, and then bending my knees deeply, Olympic-speed-racer style, so that I could catch up with him. Together, we flew down the trail, going at an outrageous pace. We were savoring the same experience, and in that moment, there were no barriers and no need for words. There were simply two siblings flying down the mountain like crazy people, skiing their hearts out together.

Today, I look out the window to a deluge of falling flurries. And I can't help but smile at the snow; I can't help but think of Willie. He skis differently now. Gone is the abandon of youth; gone is the tentativeness of adolescence. Today, Willie combines his love for speed with his knowledge of turning and proper form. His skiing has grown up along with him. And as his Special Olympics event approaches, I hope he'll take home the gold.

I am certain that most people have a subject or hobby they are very passionate about or care deeply for. This may be something into which they place just as much (but hopefully not more) time or concern into as family and friends. I have one such passion in which I enjoy indulging whenever I have free time. Put briefly, it is the pursuit of pure knowledge, not any particular subject but just knowledge for knowledge’s sake. In a way, this pursuit has helped to prepare me for my life as a writer because it allows me to learn many different things which I then can consider writing about. It has also given me a desire to test my expertise in all these subjects to their outer limits.

As a very young boy, I was able to read earlier than most children, but I could not apply what I read toward anything constructive. Because of my autism, I would fuss and fidget. I had trouble concentrating. At school, there was a lot of noise during the day, the classroom contained many interesting things that I kept looking at instead of my work, and moving into different rooms due to both grade changes and extracurricular activities made me disoriented. There was too much going on, too many distractions which were more interesting to me than what was put in front of me. When I moved into a homeschooled environment better suited for my needs, I was better able to concentrate on my work and remember important details. I grew to like learning about these new details, and it soon turned into a passion to learn as many new things as I could.

Over time, I have built up both in my mind and home a large repository of information that is both useful and trivial. I learn about things from numerous sources including books, TV shows, websites, magazine articles, and paying close attention to conversations. I found that I could somehow recall this information when I was interacting with people, down to the most obscure details. I think being able to hone in on small details is a beneficial side effect of my autism. I was able to use this skill for tests and assignments during my academic career because I could draw upon my vast pool of facts to move quickly through lengthy sections of material. 

It also makes me the game show “champion” of my extended family as I routinely surprise family members with the correct answers to obscure questions. I greatly enjoy testing the limits of my expertise in such a manner because otherwise I think a lot of what I have learned would just sit around gathering dust, so to speak.

For the past few years, I have wondered what might happen if I tested my powers of recalling information on a game show. The games seem very easy to play when I am watching at home, but I do not know how nervous I might feel if I were to actually be chosen to play. Recently, I decided to get over my worries and took an online test for a major television game show. The test was very fun and it was interesting to discover what I knew and still had to learn. I do not know if I qualified to become a contestant, but I will write an update if I go further in the process.

Learning new things is one of my favorite things to do, and, fortunately, I learn something new every day. I also enjoy being able to apply my knowledge to both professional and leisurely endeavors. I have enjoyed numerous activities over the years, but while I may have discarded some of them in favor of new pursuits, learning is a passion I know I will never outgrow. As long as I am acquiring new knowledge every day, I am satisfied on a personal level. Sharing that new information with others gives me even more satisfaction.

“I miss my friend Emily so much,” my 20-year-old son Mickey says. Emily is away at a new school.

 “Would you like to write to Emily on Facebook?” I ask.

“Sure!” he says, excited.

Except that he isn’t on Facebook. When Mickey’s teacher suggested setting up an account last year, I resisted. It stirred up my ever-present fear of people taking advantage of my son’s naïveté.  

But now the idea seems like a good opportunity. He doesn’t like phone calls; maybe he will find it easier to communicate in writing, even though he doesn’t particularly enjoy email. He seems to see it as a chore his teachers make him do.

I look up articles on keeping kids safe online. I’m eager for advice. But all I find are safety measures I’ve thought of already—telling him he cannot post his address, phone number, or any other personal information. A year ago there was some talk that Facebook might introduce an “under 13” service, but that hasn’t happened yet. Even if it does, it won’t replace parental supervision. It’s still up to me.

One morning while Mickey is at school, I set up a Facebook account for him. I apply the most stringent privacy settings possible. Then I hesitate. Besides Emily and other classmates, who will he friend? Family? Many of his cousins are typical teenagers, and I’ve seen some of the wildly inappropriate stuff teens tend to post. Can I depend on them to exercise good judgment in what they share with Mickey? Unlikely.

Then I think about some of the things I’ve posted myself, articles I wouldn’t want him reading. But if I’m even worrying about the stuff I post, is anyone—except Grandma, or my sister-in-law’s dog Buddy (yes, even Buddy has his own page)—entirely safe for him to friend?

When I first suggested Facebook he seemed enthusiastic. But when I say that I have actually set up his page and want to show it to him, he looks nervous.

“Maybe later,” he says.

Is this his usual resistance to anything new? Or something else?

 “You can look at all your friend’s pictures,” I coax. He loves poring over cartons of family photos. He particularly enjoys what he calls “the married pictures”—my wedding album. I get it: pictures are safe. Predictable. The images never change.

He shrugs me off. “Not now. I’m a little busy.”

Briefly I consider sending out a few friend requests on his behalf, thinking to lure him in that way. But what would be the point? Then it would just become one more thing I do for him. It has to come from him because he wants it. Otherwise it has no meaning.

I know how much he wants to be social. Mickey’s never shy about approaching people; it’s that once he gets there, he doesn’t know what to say. He’s been verbal for years, but I still often need to stand alongside like an interpreter, explaining or prompting him. He struggles to understand social nuances. He enjoys humor, but doesn’t seem to recognize sarcasm. I wonder if it would be easier for him to interact online, where he doesn’t have to worry if he is standing too close, or speaking too loudly. The downside, of course, is that if you strip away all the visual cues imbedded in body language, it’s even easier to misinterpret what people are saying.

Facebook can be a minefield even for typical teens. Mickey is so literal; will he understand that sometimes a “friend” on Facebook isn’t really a friend? If he sees photos of his friends having fun without him, will he feel left out? What if he gets de-friended? I know how hurtful it feels when it happens to me—and I’m a grown-up with emotional filters firmly in place.

As a journalist, I appreciate being able to crowd-source questions on Facebook, and read and share articles. (And okay, yes, I enjoy all those cat videos too.) That’s my Facebook. But I envision Mickey’s Facebook as something entirely different: a cyber mall, a place to hang out with some buddies.

Since many of his friends have graduated and gone on to postsecondary school programs, Mickey has seemed very alone to me. He’s watching far too many videos on YouTube. He’s taken to referring to movie characters as his “friends.”

Which kills me.

Is he as lonely as I fear?

I desperately want him to have friends. But am I projecting my own worry about his loneliness?

And if I am, is setting up a Facebook account in his name really for him?

Or for me?

“I miss my friend Emily so much,” my 20-year-old son Mickey says. Emily is away at a new school.

 “Would you like to write to Emily on Facebook?” I ask.

“Sure!” he says, excited.

Except that he isn’t on Facebook. When Mickey’s teacher suggested setting up an account last year, I resisted. It stirred up my ever present fear of people taking advantage of my son’s naïveté.  

But now the idea seems like a good opportunity. He doesn’t like phone calls; maybe he will find it easier to communicate in writing, even though he doesn’t particularly enjoy email. He seems to see it as a chore his teachers make him do.

I look up articles on keeping kids safe online. I’m eager for advice. But all I find are safety measures I’ve thought of already—telling him he cannot post his address, phone number, or any other personal information. A year ago there was some talk that Facebook might introduce an “under 13” service, but that hasn’t happened yet. Even if it does, it won’t replace parental supervision. It’s still up to me.

One morning while Mickey is at school, I set up a Facebook account for him. I apply the most stringent privacy settings possible. Then I hesitate. Besides Emily and other classmates, who will he friend? Family? Many of his cousins are typical teenagers, and I’ve seen some of the wildly inappropriate stuff teens tend to post. Can I depend on them to exercise good judgment in what they share with Mickey? Unlikely.

Then I think about some of the things I’ve posted myself, articles I wouldn’t want him reading. But if I’m even worrying about the stuff I post, is anyone—except Grandma, or my sister-in-law’s dog Buddy (yes, even Buddy has his own page)—entirely safe for him to friend?

When I first suggested Facebook he seemed enthusiastic. But when I say that I have actually set up his page and want to show it to him, he looks nervous.

“Maybe later,” he says.

Is this his usual resistance to anything new? Or something else?

 “You can look at all your friend’s pictures,” I coax. He loves poring over cartons of family photos. He particularly enjoys what he calls “the married pictures”—my wedding album. I get it: pictures are safe. Predictable. The images never change.

He shrugs me off. “Not now. I’m a little busy.”

Briefly I consider sending out a few friend requests on his behalf, thinking to lure him in that way. But what would be the point?  Then it would just become one more thing I do for him. It has to come from him because he wants it. Otherwise it has no meaning.

I know how much he wants to be social. Mickey’s never shy about approaching people; it’s that once he gets there, he doesn’t know what to say. He’s been verbal for years, but I still often need to stand alongside like an interpreter, explaining or prompting him. He struggles to understand social nuances. He enjoys humor, but doesn’t seem to recognize sarcasm. I wonder if it would be easier for him to interact online, where he doesn’t have to worry if he is standing too close, or speaking too loudly. The downside, of course, is that if you strip away all the visual cues imbedded in body language, it’s even easier to misinterpret what people are saying.

Facebook can be a minefield even for typical teens. Mickey is so literal; will he understand that sometimes a “friend” on Facebook isn’t really a friend? If he sees photos of his friends having fun without him, will he feel left out? What if he gets de-friended? I know how hurtful it feels when it happens to me—and I’m a grown-up with emotional filters firmly in place.

As a journalist, I appreciate being able to crowd-source questions on Facebook, and read and share articles. (And okay, yes, I enjoy all those cat videos too.) That’s my Facebook. But I envision Mickey’s Facebook as something entirely different: a cyber mall, a place to hang out with some buddies.

Since many of his friends have graduated and gone on to postsecondary school programs, Mickey has seemed very alone to me. He’s watching far too many videos on YouTube. He’s taken to referring to movie characters as his “friends.”

Which kills me.

 Is he as lonely as I fear?

I desperately want him to have friends. But am I projecting my own worry about his loneliness?

And if I am, is setting up a Facebook account in his name really for him?

Or for me?

Sometimes you just have to admit that a great idea isn’t all that great when it’s implemented. If you’ve read any of my previous columns, you’ve probably come to certain conclusions about my son, Cameron. I’m sure he would seem to be what most would label as “high functioning.” Cameron is very capable when it comes to independent living skills and he is fully embracing his own growing independence. From what I can gather, this somewhat sets him apart from his peers at his nonpublic special needs school. With the exception of a few foundation years, Cameron has always gone to a specialized school. As such, I’ve recently been yearning for him to have access to more mainstream settings when it comes to socialization. After all, in “real life” Cameron will be required to interact with the mainstream society, so it makes sense to me that he has social exposure to his mainstream peers now.

With this mainstream social integration in mind, I’ve begun a search for summer camps and extracurricular activities for Cameron. Every time I mention summer camp to a parent of a child with disabilities, I get a ton of recommendations for “special” camps. But that’s not what I’m after. I want Cameron to find out what it’s like to stand shoulder to shoulder with typical teenagers. I thought I had found the perfect solution for an extracurricular activity: my daughter’s school offers a fencing class for boys and girls in Grades 4-12. It’s a girls’ school, so I even had visions of Cameron flirting with an upper school opponent. Cameron attended the first lesson this week. The class consisted of Cameron, his sister, and two of his sister’s fourth grade classmates. Not exactly the peers I had in mind for Cameron. But he hung in for the entire lesson, and said he would go back if he weren’t the only adult in the class. (I checked, and there were four no-shows on the first day. All were female, and the oldest registered participant was a sophomore. Which would be great, if she shows up.)

The inquiry into summer camps didn’t go much better. I am not expecting Cameron to receive special treatment in his camping endeavors. I only want to ensure that the organizers would be sympathetic to Cameron’s … umm … let’s say “quirkiness.” I found a program that looked interesting and put a call in to the director. I was shocked by how quickly I was shut down and told they would not be willing to accept Cameron. The director told me (in a rather patronizing tone) that it would be nice if they could put together a group of disabled campers, but they weren’t prepared to do that. He missed my point entirely, and clearly had a preconceived notion of Cameron that was far from who he is. I felt the hairs on my neck start to prick up, and my pulse quickened as I was trying to have a conversation with this camp director. Words like “discrimination” came to mind, along with a few others that aren’t fit for print.

Both of these disappointing attempts at mainstream social integration happened on the same day. It would be easy to just throw in the towel and give up. But I’m not going to do that. I’m convinced that I can find appropriate activities for Cameron that he will enjoy and that others will enjoy his participation as well. Any ideas?

This week was exceptional. On Monday the nonprofit I head up, KFM Making a Difference, announced the inaugural scholarship winner for our Making a Difference for Autism Scholarship. The day after that was my 25th birthday. The day that has stuck out for me though was what happened yesterday. You see, yesterday was my last day of classes for my Master's Degree at Seton Hall University. Even though I don’t technically receive a degree until our May graduation, this moment has been filled with a great deal of excitement. 

The road ahead couldn’t be more intriguing. I have no clue what the world has in store for me next and as much as it’s scary, it’s interesting to see where I can go from here. The constant that I’ve had for the past 21 years has always been being in some form of schooling. Now as an autistic adult, I take my Master of Arts degree in Strategic Communication into a world that hopefully will be accepting of who I am and what I can do. 

This post’s message is focused on what I wish for every autistic individual and that is for them to one day get to feel the rush of getting their first paycheck. Unemployment numbers are at an all-time high today but I would go to bat for a large chunk of our community. A few weeks back I remember being swarmed by paperwork for school but receiving a few emails from young adults with autism asking for a quote or a recommendation. I posted my reactions on my Facebook page saying: 

“Many autistic individuals growing up go above and beyond … every day to get themselves to progress to the point where they can make job opportunities open for themselves when they get older … there is far more reward than risk in hiring these individuals and companies should come to realize this in 2013 and beyond.” 

I really believe and stand behind these words. There is so much I want for our community that I hope will bring a better future for me as well. With everything going on I can sometimes withdraw and isolate myself, but with the New Year comes new hopes for changing that. 

I want to be there for us and I want to help employers see the impact we can make. Don’t get me wrong, I know there are countless issues out there which need to be discussed for autistic adults besides employment and I promise to try my best to be there as much as I can to help us pursue our goals. The one thing I refuse to ever give up, as much as this world may change now, is advocating for us always.

It was 10:00 p.m. on New Year’s Eve, and I was in tears. Words failed as I tried to explain what was going on. My husband and I had planned a quiet evening, complete with a movie; neither of us wanted to go out. But as I stood in our den trying to pick up clutter, my husband encouraged me to let him deal with the mess later. The idea of ringing in the New Year without tidying up didn’t sit well with me; I was struck by an overwhelming sense of, “This isn’t what I wanted for tonight!” But even so, I couldn’t articulate what I did want for the evening. Given that he hasn’t perfected his mind-reading capabilities, my husband was (understandably) confused. In turn, I felt frustrated with him and especially with myself. 

In hindsight, of course, everything was clear: I wanted a “special” evening, one in which the room reflected the fact that it was New Year’s Eve. (Our surroundings really do matter, and we are more sensitive to changes in our environments than we realize.) Of course, it would have been helpful if I’d realized this earlier. If I had planned ahead and communicated with my husband, we might have made the space cozier and more inviting in time for the holiday. 

But sometimes you don’t know what you need until you don’t have it, and that was the case for me. The depth of my desire for order struck me with unexpected force. Yet even this wasn’t the main issue; the real need was for relationship. I was missing my family and friends on New Year’s Eve, feeling lonely and isolated after a vacation filled with connection. 

In times like these—moments in which I fail to fully understand my own desires and motives, much less articulate them—I can understand more about what life must be like on for my younger brother, Willie. Willie is on the autism spectrum, and he has strong verbal skills. However, he struggles to form a response when posed questions that deal with motivation or interior life. 

For example, if I were to say, “When you were watching TV downstairs, I heard a crash. Did you throw something against the wall?” he might reply, “Yes. I got angry!” (One of Willie’s braver qualities is that he usually doesn’t try to “cover up” when he has made a mistake.) However, if I were to follow up and ask, “Why were you angry, Willie?” he’d likely say, “Because … I was angry!” (This would, in turn, make me feel like throwing something against a wall!) 

Asking, “What made you feel angry?” sometimes elicits a clearer response; Willie can occasionally point out triggers such as, “The shark in The Little Mermaid,” or, “That dog barking.” But most of the time, we don’t know what sets Willie off. We can be watchful, but we can’t experience the world in the same way that he does. And that, ultimately, is the greatest challenge of being in relationships … not only with individuals on the spectrum, but with anyone. Given that, perhaps the best gift we can give one another is grace, and the benefit of the doubt. Perhaps the best we can do is listen, in the deepest sense of the word, for the needs beneath the behaviors. 

In any case, that’s the gift I received from my husband on New Year’s Eve. He stayed with me as I struggled with feelings of loneliness, and his presence helped dispel them. And so, despite the bumpy start, our evening ended beautifully. We recounted joyful memories and danced to “our song” at midnight. This New Year’s Eve, I got what I needed most, and it wasn’t an organized room. It was real love, the kind that is willing to enter into the territory of the heart, those vast, unknown canyons of need. The experience reminded me of how important it is to stay present to my brother in times when his behavior seems inexplicable. After all, having someone stay with me when I couldn’t understand myself made all the difference. Thanks to my husband, I rang in 2013 filled with hope and gratitude. 

This may be dangerous territory I’m venturing into. Perhaps I’ll offend or even shock a few factions of parents out there, but I’m just going to admit it: Sometimes having a bad tantrum can work to one’s advantage as a parent. Especially if your children fear that temper. Well, maybe “fear” is too strong of a word. Perhaps it’s better said “respect” that temper, and will go to great pains to avoid causing a temper flare up.

I have seen parents that are able remain even-keeled in the face of any adversity, and never seem to be annoyed by anything their little darlings do. If I were inclined to seek Botox treatment, I would be seeking financial reimbursement from those parents. The expression I make when I see a parent calmly reasoning with little Johnny about why it might not such a good idea to hold the dog by the neck … well, let’s just say that expression isn’t pretty. And I’m afraid my face might actually stick that way, like my mother always warned me.

I firmly believe that children of all ages need to know boundaries. When those boundaries are crossed, there should be consequences. My children have come to understand that sometimes the consequence is Mom having a temper tantrum. No, I’m not emotionally or physically abusive, nor should any parent ever be. I have been known to shout, however. And you know what they say: When momma ain’t happy, ain’t nobody happy. When I shout, it is quite clear I am not happy. And it gets results.

As I’ve said before, Cameron is a very compliant young man. If something is expected of him, you can expect he will do it. I wonder if Cameron’s compliance is a result of my parenting, or in spite of it. He very much follows the rules, and expects those around him to do the same. He has been known to attempt to head off my temper tantrums where his sister is involved. If he sees his sister getting close to crossing the line Cameron knows so well, he will do his best border collie impersonation to reign his sister back in before my kettle boils over. Am I wrong to like that? Is it wrong that it takes a temper tantrum for me to get the desired outcome?

Now that I think about this parenting “style” of mine, I realize that this formula may have evolved with Cameron’s help. Back when I was a young parent struggling to understand the language issues Cameron faced, I distinctly remember driving home from daycare one evening and Cameron was in the backseat having his own tantrum about wanting ice cream. I was trying that calm reasoning approach, trying to explain to him the importance of eating dinner before he had ice cream, and that was only met with louder sobs. I finally said (shouted), “Cameron! Yes dinner. Yes ice cream. No dinner. No ice cream.” To which Cameron replied, “Oh. Okay.” In that moment, Cameron did what no parent should ever do. He rewarded the temper tantrum. I’m sure someone will now tell me that I should never raise my voice to my child. But the message gets across and the expected behavior is the result. Is that so wrong?

Cody’s meeting with his new service coordinator is today.

I mentioned in my last column how we planned to discuss with her the possibility of Cody going to a program in Springfield that has small classes for adults on the spectrum. These classes involve cooking, learning about the weather, learning different aspects of science and more. But there are other things we want to discuss as well.

One of the things I fought for during Cody’s high school years was speech therapy—not to help him learn to enunciate words correctly but to learn basic conversation skills. Sadly, that was never something they provided in spite of my efforts to convince them this was something he needed, but why not?

It seems the prevailing thought is that such service doesn’t do any good for people past the elementary stage of learning. That is something I fail to understand. If a person suffers a trauma to the brain sometimes they have to relearn speech and conversation. And sometimes that takes years to do. But a person with a Pervasive Developmental Disorder is somehow seen as incapable of advancing past whatever he has learned by the age of 12 or so. In Cody’s case they simply gave up even before that.

Why isn’t this something that is covered by his Partnership for Hope Waiver? I know he can learn because he learns these things from Bill and me. Imagine what he might be able to learn from someone who specializes in this area—someone who could work with him specifically focused on this goal, on a one-on-one basis. Well I did some research and it was an eye opener.

The programs and services Missouri will pay for are extremely limited. Adult daycare services and home care services make up the biggest portion of the services paid for by the state. But that isn’t what Cody needs.

One-on-one services where speech therapists and occupational therapists can work with Cody is what he needs. And he does need integration into larger settings. But I can’t just take him out and throw him into that situation. A meltdown of epic proportions would be sure to ensue. It has to be done a little at a time.

But there is no focus on what adults on the spectrum actually need. There is only a very narrow, generalized scope of what is needed for people who have ASD, Downs Syndrome, and other developmental and intellectual disabilities. It’s like giving a dose of medicine to someone with a heart condition and then giving the same dose of the same medicine to someone with a broken leg and expecting both to be made better. It just doesn’t work!

If you're anything like me, you get a little apprehensive when you hear people make statements such as, “I've given up on setting goals,” or, “I'm not making any New Year's resolutions this year.” Life without goals can seem like a kind of anarchy, and I crave order and consistency. In fact, when I served as a caregiver for adults with special needs such as autism, I assisted people in accomplishing their goals every day. I signed off countless goal checklists, as required by Medicaid. And later, I stepped into a role that involved creating those same goal templates. In short, I was immersed in the goal-setting efforts of others. Yet even as I typed up the checklists, I felt that these documents didn't make room for the nuanced reality of caring for a specific human being whose needs would vary from day to day. The data sheets seemed to suggest that, if you could simply sign off on every box, you'd have ensured a “successful” day for the individuals you supported. And in my heart, I knew that that wasn't true. 

Individual support plans (ISPs) have come a long way, and they do have their place. It's vital that we empower and support individuals with autism to achieve outcomes that are essential to their health and well-being.  However, as the New Year begins, I've been considering the benefits of letting go of goals. I've come to see that there's a difference between prioritizing and organization (both of which are key to caregiving), and having an entirely goal-directed mentality. In fact, it's ironic that success in the “caregiving” field is often measured by goal achievement. And as a newbie caregiver, I fell into this trap. I wanted to prove myself, so I tended to view my caregiving routines through a “let's-get-things-done” lens. However, as I continued in my role, the people I worked with helped me to see differently. They led by example, teaching me to slow down and notice small delights. They showed me that I could let go of expectations and still accomplish my tasks for the day. They made me laugh and take myself less seriously. They showed me that love for oneself and others is a much more powerful motivator than any goal sheet.  

When I transitioned from non-profit management to self-employment, though, those valuable lessons started slipping away. I set numerous, ambitious goals to get my writing business off the ground. I worked on my goals every day, and I reaped the rewards of that consistency. Yet as 2012 drew to a close, I found myself stuck in a goal-directed mindset. I love working from home, but it can be difficult to flip the “off” switch. As such, I had some trouble relaxing into the holidays. After all, I wouldn't move closer to my goals if I took “too much” time off. Almost in spite of myself, I found that I needed a break from goals. I needed to get back to the lessons I'd learned as a caregiver. 

I believe that our fixation on goals and “getting things done” can be dangerous to ourselves and those in our care. We can run ourselves into the ground trying to achieve our goals and support others in achieving theirs, or we can work together with the knowledge that we are enough, just as we are. We are human. It's all right to rest when we are tired, to ask for help, to change course. 

This year, I want to practice attending to the present moment, caring for myself and others as needs arise. I want to act with compassion, and give credit for small victories. And even as I work toward desired outcomes, I want to remember that what matters most cannot be measured or charted.

At the beginning of this New Year, as many people do, I find that I seem to be questioning myself every single day over my future and the next moves for my life. I used to feel more confident about most of my personal affairs, but now I sometimes feel as if I am just treading water and not really making much headway in any particular direction. Therefore, asking myself questions allows me to consider all the directions I could go in and determine which route would be the best one for me. Sometimes my questions are trivial in nature while at other times they cause me to stop and think a bit about what my answer will be. When I look at them all at once, they act as an informal survey of where I am in my life and what my top priorities are.

One of the more important questions I have been turning over in my mind is, “What else do you want to do with your writing career?” For most of the past year, the majority of my writing output has been for this column. I have been tinkering in my spare time with some short stories, character outlines, and settings, but I have not fully developed them yet. I feel that I can now get back to them and refine them as well as work on other ideas I have been thinking about. I have also decided to start a blog so I can write about things which interest me and develop more ideas for my other writings. Writing a blog was actually a step recommended by some of the creative writing textbooks I had in college; they said a blog could greatly expand my audience and lead publishers and other writing entities to my work. I am very excited about this opportunity because it will give me a platform to experiment with new genres of writing and see which styles I am most suited to.

Another question weighing heavily on my mind is, “Can you conform to a better diet and exercise plan?” During my college years, I fell behind on the active lifestyle I had been developing, a sacrifice I felt I had to make because of the amount of school work I had to complete. Since my graduation, I have attempted to develop a better diet plan with some positive results. Even with the tactile issues in my mouth that affect me, I have greatly increased the variety of foods I eat, and my meals now consist of mostly fruits and vegetables with lean meat and healthy snacks on the side, but burgers and other fast food items can still appear depending on circumstances. Developing a healthy diet has been a continuous challenge for me all of my life, but I am determined to continue adding more and more nutritious foods.

I have also started walking on the treadmill on a regular basis. For about 30 minutes each day, I take a walk on the treadmill at a steady pace. Between my revamped diet and regular treadmill walks, I have lost nine pounds so far. I have found that I can move about more easily and am able to perform tasks that were hard for me to do before such as lifting or moving heavy objects. I am most impressed with my increased range of motion, and I want to expand my exercise program to continue to help with my low muscle tone and other motor issues.

To this end, I have signed up for hippotherapy (physical and occupational therapy on horses) at a nearby barn which will help me to continue to develop my coordination and strengthen my muscle tone. I participated in a hippotherapy program as a boy, and not only was it a lot of fun but it also helped a great deal to improve my physical issues. I am thrilled that there is a program nearby I can join as an adult, and I am looking forward to starting in the spring.        

One other question I am considering the answer to is, “Can you truly reach your goals and are you willing to work hard for them?” I now realize that in order to do this, I will indeed have to work hard and make some improvements which I am very willing to do. I am continuing to study my books on job interviews and working on how to best prepare for them. I am planning to meet with someone I met at a job fair last year to conduct mock interviews and formulate appropriate and relevant answers to any type of question that I may be asked. In addition to starting a blog, I am looking into other opportunities for freelance writing work which reflect my interests. Finding more work will help me to become more autonomous and able to take care of my own affairs.

After considering all of these questions, I now think this year will have a lot of big changes in store for me. Last year felt a bit rushed to me with graduation and new aspects of my life happening all at once. This year, I want to focus on getting these new aspects under control and plan out a new and steady course. I am very excited about all of the changes happening to me, but I want to keep my bearings and not have them overwhelm me. This year has a lot of new possibilities in it, possibly the most I have ever had. It raises the question in my mind, “Where do I go next?”