Monday was the last day of work for Stephen, Cody’s Occupational Tech. A substitute will be here on Thursday to continue Cody’s care plan through the end of July. Then Josh, Cody’s new Occupational Tech, will start in August. But one of the things Stephen did before he left—for which I am most grateful—was to introduce lots of changes into Cody’s life. This has helped Cody grow and progress tremendously!
There was a time when Cody had a specific criterion for everything. He had specific restaurants he would only go to with Grammy, and specific restaurants he would only go to with us. When Stephen came along, he made sure to give lots of choices but if they went to a particular restaurant on one outing then he did not name that restaurant in the list of choices on the next outing. This way Cody could adapt to change but still have a say in choosing.
At first, Stephen planned the day according to a written schedule that was on the kitchen door for Cody to see. But as time went on he began to make changes in small steps. They might switch the time they did laundry or instead of making the bed right away they might work on math skills. Instead of doing vocabulary, they might work on computer skills.
As Cody became accustomed to these changes in his routines, he began to enjoy it more and more. Soon Cody was expressing his desire for change.
One day when Stephen had suggested they go play basketball, Cody said, “Oh let’s just do something different.” Stephen happily named off some other choices and Cody chose going to the bookstore. This made me very happy!
Before long, their activities were no longer limited to walks in the park and basketball. Soon they were going to movies. Stephen has always done very well at picking the movies Cody likes. He knows Cody doesn’t like kid movies. So they always went to see movies that two young men their age would go see.
They also went bowling. Cody had fun there as well, even though more balls probably went into the gutter than down the lane.
Miniature golf was a new experience for Cody. I can’t guess how many golf balls they might have had to chase down, but who cares? I was perfectly delighted to see the grin on my son’s face when they returned home.
Cody and Stephen visited the batting cages from time to time. Neither of them seemed bothered by the missed balls or the foul balls. And all the other patrons kept their windshields intact, so they didn’t mind Cody’s lack of baseball finesse either.
Cody enjoyed visits to the Nature Center very much. He is very intrigued by the jungle-like areas with paved pathways.
I think it helped Cody tremendously that Stephen was never shy around him. From the very start, the two of them almost acted like brothers.
Sometimes Cody would come out of his room from getting dressed and he would have his shirt half tucked in and half out. Stephen would squirrel up his face at him and say, “FIX YOUR SHIRT!” in a comical voice. Cody would laugh at him then pull his shirt free from his trousers.
There was lots of joking and horseplay between the two of them. If Cody began to get agitated for some reason, Stephen would growl at him like an attacking dog and that would make Cody laugh and he would soon forget what he what had made him grumpy.
Monday afternoon, Stephen’s supervisors from Cody’s service provider came and introduced us to Josh, who will be taking Stephen’s place in August. He seems to be a pleasant young man who takes great interest in his work. We talked for quite some time and we were impressed. But more than anything I was very delighted to see my son walking around and giggling with a huge smile on his face. This was a remarkable difference from his behavior in situations like this in the past. There was no nervousness, not hitting his head, no lamentation and no rubbing his ears. I was amazed!
I am sad that Stephen is leaving us. We will all miss him very much. However, I am happy that he is going on to a fulfilling job where he will be helping many people. But I’m thankful for all he has done to help my son and because of him Cody is handling this transition extremely well.
I leaned forward to listen as my best friend Tam described her son. “He pays such attention to detail. He remembers exactly where things are,” she said. “When he goes to summer school and faces a big crowd of kids, he gets overwhelmed. He's sensitive to loud noises, to busy scenes, to wearing socks and hats. When he's part of a play group, he'll usually hang back before joining the other kids. He's paying close attention, analyzing everything before he makes a move. And learning these things about my son helps me to understand some things about myself that I always took for granted … for example, the fact that I can't wear turtleneck sweaters or bracelets on my wrists, or why I hate wearing socks … it's because of the way they feel against my skin. I'm sensitive to touch, and I believe my son is, too.”
I understood, and moreover, I could empathize. Tam had come to these realizations by reading “The Highly Sensitive Child” by Elaine Aron (and I'd just finished reading “Quiet: The Power of Introverts in a World that Can't Stop Talking” by Susan Cain, a work with significant thematic overlap). Thanks to my relationship with my brother, Willie, I knew firsthand that many people with autism are also highly sensitive.
As Tam described her experience, a series of pictures flashed across my mind. Willie, wearing headphones at movies, so that the sound wouldn't overwhelm his senses. Me, pressing my hands to my ears as ambulances screamed past. Willie, unraveling his socks if he felt a single stray thread. Me, not wanting to wear my hair down (despite my friends' prompting) because I wasn't used to the physical sensation of hair resting against my neck. And—perhaps most significantly—the feeling I get before Willie has a meltdown, and the relationship between my (or my parents') level of calm and his ability to calm himself. I feel myself tense before he explodes, and I've noticed a correlation between the ability of the people around Willie to remain calm during a meltdown and his capacity to self-regulate his behavior. Offering him a calm, supportive, low-stimulation atmosphere cannot prevent a meltdown, but it can affect the severity and duration of one.
Indeed, there's something of a relief in knowing that these scenes are linked. There's something validating about the realization that I am a highly sensitive person, and so is my brother. And, moreover, knowing this helps me to better navigate my own life, and better support Willie in his.
And I wondered: What's the connection between high sensitivity and autism? What can people with autism teach us about the experience of being highly sensitive? To answer these questions, I turned first to Elaine Aron's 2009 article on the topic. Aron writes, “In brief, you can best sort out sensitivity from ASDs [Autism Spectrum Disorders] by keeping in mind two differences. First, social perception—HSPs [Highly Sensitive Persons] are generally more skilled at observing what's going on in a social situation, even when they are not joining in. Second, HSPs have intense imaginations and varied interests rather than narrow preoccupations.” Aron notes that many individuals with an ASD have a lower-than-normal sensory threshold, and may require higher-than-normal levels of stimulation.
With that in mind, my second question found a resolution, too. People with autism—be they more or less sensitive to physical stimuli—teach us that there is no one “right” way to experience the world. Every individual has a unique threshold for sensory input, and those thresholds are to be respected, even in the times when they're being stretched. Individuals with autism have paved the way to greater understanding of how sensory thresholds influence one's chances of success in specific endeavors. I think of Scott James' final experience in X-Factor (being required to stand in a small tunnel “filled with shouting, crying, rehearsing people”) and can't help but hope that someday, society may begin to honor and respect differing sensory thresholds, and, in doing so, empower people like Scott (and Willie) to share their gifts and succeed.
My son has completed his first week of paid employment! I have found Cameron’s employment to be an interesting exercise for both of us. I have had to consciously decide on how much parenting is appropriate in this endeavor of his. I think as the days go by, I’m getting the hang of things.
On Day One, I set my alarm and made his lunch—just this one time. He wasn’t sure if he would have access to a microwave, and I know best, after all, how to fit a full lunch into his thermos. Cameron took care of his breakfast and dressed in the dreaded work attire. He was to report to his office by 8:30, and was ready to leave the house by 7:30. The commute would take no longer than 45 minutes, tops. I drove him to the Metro station, leaving the house at 7:45. He called to let me know he had arrived, at 8:08. When he called me again at 3:00 to say he was on the way home, I felt like a child on Christmas morning. I couldn’t wait to see him and hear how the first day had been. Of course, I didn’t get an enormous amount of details, but that didn’t squelch my excitement. When he arrived home, I told Cameron to make sure his supervisor was aware that he would be out the following week. I was thinking he would take care of this when he arrived the following day. Instead, Cameron went to his backpack and took out a piece of paper with contact information on it. He called his supervisor that very instant, and made sure all was taken care of. I remember thinking how much easier my life would be if I handled things instantaneously like that, instead of putting things off until it’s more convenient.
On Day Two, I was a little more relaxed. We left for the Metro station 10 minutes later, and I was on pins and needles when I hadn’t received the “I’m here” call by 8:31. My phone rang two minutes later, and I fretted that Cameron was late on his second day of work. He finished early that day, and when he called to say he had arrived at the Metro station, he asked if it would be okay if he went to Angelico’s to wash dishes for a bit. When he arrived home, I started grilling him about his arrival time that morning, and whether or not he considered his arrival on time or late. He informed me that he wasn’t expected to start until 9:00. “Are you sure, Cameron?” To which I received, “I’ve been there yesterday and today, and they said I start at 9:00.” Instead of emailing his supervisor to verify this information, I decided to let Cameron put me in my place, and let this be his job.
On Day Three, Cameron decided to ride his bike to the Metro station. He arrived at his office at 8:48, as he did for the remainder of the week. He has been more conversant this week than I can ever remember. He is clearly proud of having a job, and even answered “yes” when someone asked him if had made any friends. So, all in all, it has been an exceptionally good first week on the job. And he did it all without any meddling on my part! Admittedly, I did have to reel myself in a bit, but thankfully Cameron is showing great patience with me as I learn on the job.
When I was 14 years old I had my first kiss. It was during a slow dance to the song “Back at One” by Brian Mcknight. It was a kiss full of emotion and a slight bit of shock that it was actually happening. Looking back now, though, the reason I remember that moment so well wasn’t because it was my first but because of how I remembered that song playing in the background.
If autism has given me any one gift I think it’s the ability to retain information in unique ways that most other people can’t. I can remember Howie Day’s song, “Collide," playing in the background at our school gymnasium when I fell in love for the first time. I remember when I was 10 and was listening to “I Want It That Way” from The Backstreet Boys. (Yes, I wanted to be the sixth member of their boy band way back when!) The morning of the first day I switched schools to a private school for students with learning disabilities. Even while I’m writing this article I’m listening to a playlist of R&B Slow Jams that I listened to while studying for my first test that I got an “A” on in high school. For me, a long list of moments in my life can be broken down one way or another into a song.
I think this type of focus has contributed to my overall development and it serves as a constant reminder of why we must continue to play to our strengths while at the same time working on our weaknesses. I think too often people in our lives focus on “deficit-based learning” where we look at how to address our weaknesses without focusing on our individual strengths as well. I see this as a huge problem especially for autistic adults.
Regardless of my weaknesses, I’ve always stressed that my abilities (like retaining moments in my past through music) have been basically like superpowers to me. Sure I may never be able to fly, walk through walls, or turn into a green rage monster whenever I want, but having those powers would take away one of the greatest gifts I think anyone is ever given and that’s individuality. If we could start considering everyone as superpower-based on his or her own strengths we would be so much better off.
Think about it. A collection of “Avengers” that consists of everyday heroes of all different abilities. A lot of people look up to these comic book characters as role models when, in reality, every time someone looks in a mirror they are looking at a potential hero full of endless possibilities.
So regardless of what your strengths are, just remember to play to them as much and as well as possible. Even if you don’t know your main strengths, focus on pushing yourself to understand what they are. Get out there, ask questions, and remember to look towards your loved ones for guidance if all else fails. One thing about being an adult is having the confidence in yourself to advocate for your specific needs. This can be tough but one thing I’ve noticed through being an autistic adult is that the only way you can fail in this is if you don’t try. Hockey player Wayne Gretzky once said, “You miss 100 percent of the shots you don’t take.” Please remember to take your shot because it can truly lead your way to greatness.
Few things have the power to drive a person as crazy as a move … and a long-distance move has the kind of crazy-making power that most other life events can only dream of possessing. As a friend reminded me this week, in the list of major life stressors, moving makes the top three; it's right up there with death of a loved one and divorce. It's no wonder, then, that every little thing seems to elicit more stress than usual for me this week. As I type, my husband and I are preparing to begin a three-day move to a small town in Alabama. Starting tomorrow, we'll be driving away from five years in the same Washington, DC neighborhood and starting a new chapter in our story. We're moving into a home we own in Alabama. We've never lived there together, however, since we met and fell in love at L'Arche DC (a faith-based non-profit that creates homes where people with and without intellectual and developmental disabilities share life together).
Why the decision to move? Both of us have started our own businesses this year; mine is in writing and web copywriting, and my husband's is in web hosting and remote technical support. As such, we've decided to relocate from the big city to a small town in order to live more simply and enjoy more time together. (Ironically, it takes a big, complicated process to arrive at that simpler life!) As I wrote in a recent A Wish Come Clear post, “Everything [is] in transit, everything [is] in flux. For a couple who likes their daily routines, this is a destabilizing prospect.”
Destabilizing indeed … and that word makes me think of my brother Willie, and how important his daily life routines are to him. As my husband and I go into moving mode, I realize that even small changes to Willie's regular routine may make him feel the way I am feeling now: disoriented, displaced, and generally distressed. My husband's family moved many times in the course of his childhood; my family, by contrast, moved just once, when I was less than a year old. My brother has lived in the same house for his entire life, and at this moment, I cannot help but wonder if that is no coincidence. I wonder if, perhaps, my parents wanted to spare him—and me—the generalized chaos that's caused by a move.
I also find myself struggling with feelings of over-reactivity this week; the slightest unexpected change in my schedule sends me reeling. Even though I know better than to give into it, there's still an irrational sense of panic dogging my heels. I wonder, Is this what Willie feels like before he has a major meltdown? As moving day draws near, I coach myself with the self-soothing techniques that work for my brother. I'm taking deep breaths, and reminding myself that, in the long run, small mistakes and miscalculations are, “No big deal.” (In short order, I think I'll need a rug to roll up in; the sense of calming pressure that comes from Willie's technique sounds pretty good to me right about now.)
Rationally, I realize that everything will get done and that, as minimalists, my husband and I are actually more prepared for this big move than most. And there's also a fierce excitement running through my veins, the kind that makes it hard to fall asleep at night. There's a feeling of imminent adventure, a freedom found in letting go and starting over.
And that's the beautiful gift within the stress of our move: the ability to understand what it might be like to experience life as Willie does. To gain empathy for his need for structure and admiration for his courage when he faces change. We learn by going, after all, and this move is teaching me compassion, for myself and for my brother. I remember the words I wrote in a recent feature on Extreme Sports Camp: “I wonder if, despite the fact that Willie loves routine, such an experience of exploration might be just what he needs.” I wonder if it might not be the same for me.
In the past few years, I have attempted to play a lot of sports, from baseball to soccer and even floor hockey. My favorite sport out of the whole bunch, however, is golf. Whereas most of the other sports I play are primarily focused on many people working together as a team, golf is a sport in which an individual player’s skills are most important. I am still learning to develop these skills for myself as well as the discipline needed to play well as a golfer. I am currently participating in a clinic which has helped me immensely in learning this discipline.
I am taking the clinic with a large group of other people with special needs; I know some of them from various other sports and activities I participate in, but I am also making new friends at the same time. Our teacher helps us to understand the nuances of the game. He has been very friendly and helpful, and he takes time to help us all out individually with a few small pieces of advice which have helped each of us to greatly improve.
On our first day, we learned golfing terminology and some famous golfers and tournaments. I was familiar with most of the terms he taught us from playing golf-based video games at home and watching golf tournaments on television, but it was interesting to learn about where they came from. For instance, I knew that the portion beside the fairway was called the rough, but I never knew that the rough has such a name because the terrain in these areas is rough and gives golfers a hard time trying to hit their ball back out onto the fairway. I was surprised that such reasoning had never occurred to me before.
After these first lessons, the group practiced long shots on a driving range. Driving is one of my favorite parts of golf and it was a major focus of another golf program I have taken in the past. I did learn a lot of new things about driving through this clinic which have helped me to greatly improve my swing. The next day, the group practiced chipping and putting. Once chipping practice was over, it was time for my second favorite part of golf: putting. Several groups of pins had been placed onto the putting green to serve as small practice “holes.” Using a putter with a flat part designed to hit the ball in a straight line, I attempted to put my ball through each pair of pins. This was somewhat similar to the putting I had practiced with my other golf program, but unlike the green I had been on then, this green had a lot more curves, hills and valleys, making it harder to line up a good shot. I tended to miss my intended target more often than I got the ball cleanly through the pins, but I did get a better sense of what it must be like for professional golfers who often have to wage battle against the course itself in order to get the lowest number of strokes possible.
As I write this, I have yet to participate in the last day’s events which will include a “captain and crew” game on the golf course. From what I understand, we will be divided into various groups and practice all that we have learned on the actual golf course. I have never practiced on a real golf course before, so I look forward to the experience and to see if I can play well under more authentic conditions.
I feel that I have greatly improved through this golf clinic. I have been having a lot of fun and I have gotten a lot of great exercise. I enjoy trying new things like golf because it allows me to experience certain parts of life I have never encountered before. I usually feel nervous about doing them at first and I may perform poorly in the beginning, but as I receive guidance and encouragement, I find that my skills improve as time goes on.
Also, being able to step out of my comfort zone and do new things helps me to learn about new concepts and ideas in other areas of my life. I have discovered that perseverance and practice are key elements to learning this game just as they are key elements with anything else I have had to learn in my life and will continue to learn as time goes on. Also, I am not just staying in one place. I am getting out and taking on new challenges. I feel that this is an important part of one's life because there are many opportunities to learn new things if you know where to look. You might surprise yourself and excel in areas you never thought you could along with finding out that you actually enjoy the new experiences.
For the typical teacher—and no, I’m not 100 percent sure what that is—the last day of school brings with it a myriad of emotions not unlike those experienced by the 18-and-under set. Contrary to what many young people would like to believe, we are working just as hard, perhaps, some would say, even harder, than the students themselves. Yes, we’re getting paid to be in school, but the enormous weight of the importance of our jobs to our students’ future cannot be measured in dollars and cents. So summer break arrives at a point in time where most, if not all, teachers have been counting the days right along with the students in their care. We’ve been dreaming of this break at levels at least equivalent of those we teach, if not more.
As a special-education teacher, my summer vacation is not quite on par with that of my general-education counterparts. I have three weeks “off,” then school for six weeks, and then two weeks off again at the end of the summer. Having been in circumstances over the past few summers where I was not working from June through August, I have come to the conclusion that this summer’s routine is going to be just as beneficial for me as it is for the students who qualify for Extended School Year (ESY). The intent behind ESY is to allow for students with IEPs to avoid that big gap in programming that would most likely result in significant regression in skills.
While I cannot speak for every teacher who happens to have an autism spectrum or related diagnosis, I know that for my own sake, I am much better off when I have just enough time off to rest and recharge, but not so much time that I find myself slipping headlong into a somewhat numbing, isolating routine. That’s what happens to me when I get too much of a good thing, such as vacation. I spent last week—our first week off here in my corner of Pennsylvania—talking myself out of going into school to get things ready for ESY. The compulsive nature of my wiring drives me, and when I am “on a roll” such as I have been for most of this school year, I am afraid to stop for more than a day or perhaps two. Any more than that and fear creeps in that I will fall into the trap of procrastination shared by so many of my ASD fellows. I will go from being driven to accomplish all that I am responsible for and then some (so many ideas just waiting for me to have time to start implementing them!) to a shut-down mode that keeps me sedentary and effectively useless for days or weeks on end.
This summer will be different than summers past, because my future is as secure as I could hope for, and I love what I do for a living. That love will motivate me this summer during my vacation to keep my head out of the dark recesses of my autism. There’s so much positive I can focus on that I am more optimistic than ever that I will have little difficulty using my Aspie powers for good instead of evil in the coming weeks. I can only hope that my students who will be joining us this summer will see – if not now, than one day, perhaps! – that the more practice we have in finding that balance, the better. I did not go into school last week, and I somehow managed to not feel completely crazed by taking my first full week vacation since 2011. As for the next two weeks, let’s just say I’m planning on taking it one day at a time!
By the time you read this, my son will have arrived at his first day of work for his first paying job. I am thrilled beyond words. I had hoped this day would come when I made the crosstown trek in rush hour, to wait in line with hundreds of youths in a school gym, as we provided evidence of our residency in the District of Columbia. That was early spring, and I was filled with anticipation, in hopes that Cameron would be able to find a meaningful job placement to take the place of ESY, or summer school. It seemed like such a great plan: Enroll in the Summer Youth Employment Program (SYEP), find a placement at a pizza restaurant, and Cameron would have a legitimate work experience earning real money. Only, when the job database opened for participants to apply for openings, nothing seemed like a suitable match for Cameron. At all. SYEP isn’t a program for youths with disabilities, so what was I really expecting? I chalked it up to another ride on the roller coaster of parenting a child with ASD: The thrill of a plan shaping up followed by the defeat of things not going according to the plan.
I tried reaching out to the program coordinators for assistance in finding an appropriate placement for Cameron, but my emails went unanswered. I went about planning the family vacation and Cameron's visit with his dad in Atlanta, assuming that paid employment would be awhile coming, and from another source all together. Then one day last week, Cameron showed me an email from the SYEP office. It was a reminder that he needed to attend an orientation session in order to get a job. I decided to make another crosstown trek in rush hour to get Cameron to the orientation, and hopefully find someone to talk to about job possibilities. I did speak with a very helpful program employee, who took my information and promised an email to follow up. Still nothing. But what was becoming clear through this process was that I had misunderstood how the program worked. Participants were encouraged to apply for preferred jobs, but an assignment would be made regardless of whether or not any applications were submitted by the participant. Hmmm … what type of placement would Cameron be assigned? He had not been able to attend the job fair to meet potential employers, and the orientation session he went to was a last chance event, as he had missed a prior session he was scheduled for. And since I had made those vacation plans, how would his employer react to Cameron asking for two weeks off from a six-week program? Really, what was the best I could hope for? Pooper Scooper at the dog park maybe?
When Cameron's job assignment came, it was clear that someone had been listening. Cameron is working in the mailroom at the Department of Disability Services. His supervisor of record is a Transition Specialist with the Rehabilitative Services Administration. Mind you, it's no pizza restaurant. But I think this will be as compassionate a work environment for Cameron as one could hope for. Cameron's only issues with his assignment are the 8:30 a.m. start time and the "business" attire. I pointed out that if he were in summer school, the bus would be arriving at 6:29 a.m. and quickly put an end to his "early" start time grumbling. I'm sure he'll adjust to having a collar on his shirt soon enough as well. I cannot wait to see how this experience goes for Cameron. I'm so glad I made the decision to skip ESY this year, as the job skills he learns will truly have an impact on his future employability. And just so he doesn't stray too far from his dream, Cameron wants to put in an hour a day washing dishes at Angelico Pizzeria after he finishes his five hours at DDS.
As of right now, Cody doesn’t stay at home by himself. But that day will come and we have to make sure he is prepared.
Part of what Cody’s Occupational Tech, Stephen, does when he comes here will help. Making sure Cody knows a routine is imperative to his success and safety when he is home alone.
Simple things like knowing how to get his morning coffee. We have a brew station that automatically comes on and shuts off. All he needs to do is know how much creamer to put in first. So we put a small measuring cup with a clear black fill line drawn on it so it will be easy for him to know when enough is enough. Then he can simply put his mug up to the spout and press the dispenser lever, and voila! He has coffee.
We have simply-made, breakfast foods that can be microwaved in a pinch. Our microwave has express buttons to push for anything that can be heated in one to five minutes. Having lots of instructions—with tasks broken down into small increments—posted around that house will be key in helping Cody be more self-sufficient when the need arises. For example:
Cody has a morning routine down pretty well. He gets up and has his coffee; then it’s time for breakfast. When breakfast is done, he brushes his teeth and gets dressed. But it will be important for him to have a routine for the rest of the day as well. Making posters with reminders of what to do next is a good way to ensure he’s not just wandering around the house with nothing to do. Having nothing to do leads to boredom and boredom can lead to trouble. Cody can get frustrated in a very short time, which can lead to a heartbreaking meltdown.
Planning ahead will be crucial. Making sure there are small cartons of milk and juice available will make life easier, too. And what about a simple, inexpensive cell phone? That way, Bill and I can call to check on him and not have to worry about him answering the home phone and giving away information to people who would take advantage of him.
That leads to the question of emergencies. Stephen has been working with Cody on making sure he knows his address and telephone number to give to 911 if a dangerous situation arose. We also need to make sure he knows to exit the house quickly in case of a fire and to call 911 to let them know, then to call one of us so we can make a bee-line for the house and call nearby relatives to get there and make sure Cody stays out of harm’s way.
Buying a cell phone ahead of time and having him practice using it is going to be on our list of things to do soon. Cody has a birthday coming up. Perhaps this would be a great gift for him. He actually loves it when he gets calls. Missouri recently activated the no-call list for cell phones. Cody’s number will be added to that right away.
If he has a cell phone, then something as simple as making sure he has shorts and jeans with front pockets or even t-shirts with pockets will be important. This way his cell phone can be on his person at all times.
There are a million things one has to think of when planning for an individual on the autism spectrum to be able to be self-sufficient while parents and guardians are at work. There will come a day when day-hab services may not be available anymore. And for us the list of people we can trust to stay with him for those hours is dwindling. So there will be lots of preparations for operation HOME ALONE in the months ahead.
Last week, I read a blog post entitled, “What's Right Now” by well-known “clutter buster” Brooks Palmer. Brooks has a gift for getting to the heart of clutter issues, and I read his insightful posts for the psychological insights and human drama. In reading this post, I found myself remembering a particular day of decluttering I'd done with my mom, and what we uncovered during that time.
It must be said that my mom is an incredibly patient and supportive parent. She doesn't love decluttering in the same way that I do, but she does enjoy creating order, and she loves spending time with me (even if it's clutter-busting time). On the day in question, our chosen project was my brother Willie's closet. It's a tight space, but that day, it was filled to capacity with old projects, outgrown clothes, art supplies, and various odds and ends. We filled trash bags with discards and donations, moving along at a good clip. Of course, the stuff became overwhelming at times; more than once we both stood in awe of the objects that had managed to make their way into Willie's closet.
There were difficult decisions to be made; Mom knew that we couldn't keep every piece of art Willie had created, and it was tough to choose between them. At my suggestion, we kept a few of the best creations, hanging them up in the closet and the bedroom so that they'd be on display. The hardest things for my mom to part with, though, were the ones that represented Willie's learning process. We unearthed a phonics-based program they'd used when Willie was younger (complete with floppy disks), old math worksheets (many filled in, but a few stacks still blank), and hundreds of tiny plastic figurines that had helped Willie to learn personal pronouns and storytelling skills. These things had been part of Willie's early intervention program, part of the reason why he can do so much today.
Even though these things hadn't been used in years, Mom was reluctant to let them go. To me, it seemed obvious. The materials were out-of-date and out-of-use, clearly recycling material. But then I looked into my mother's face, and I saw what they signified for her. These weren't just outdated educational materials. These things represented hours upon hours of time that she had shared with her son. They represented her dedication to helping Willie learn and grow. They were proofs of proactivity, proofs of dedication.
The downcast-yet-determined expression on her face seemed to say so much. If I read it correctly, it said, “Willie, we did all of these good things together, and yet sometimes, when I think of your life now, I wonder if they helped at all. You're stuck in a cycle of self-injury, hurting yourself and others, and so many of the gifts you have go hidden because of it. And yet these things remind me that I didn't give up on you and your potential back then, and I'm not going to give up now.”
All at once, I remembered an earlier decluttering session Mom and I had done together, this one focused on the basement toy closet. When we'd come to an old baseball and mitt, I couldn't understand why she didn't want to part with them. When I asked her, she burst out: “I thought that maybe someday Willie would play.” And as I reached out to hug her, I understood. It can be very, very hard to let go of past dreams, to let go of what might have been and never was. It can be very, very difficult to face “what's right now” … and yet facing what's real in the present is, I believe, a powerful prerequisite for acceptance, and, ultimately, freedom. I enjoy decluttering despite its difficulties because it's a liberating process.
Ultimately, Mom and I decided to give away both the baseball equipment and the educational materials. Yet even so, there's a part of me that's glad my mother kept them so long, so that I could be with her in the letting go … and so that I could see what love looks like.
For many Aspies, that's loneliness.
In a MAD Magazine satire, a character says “I don't need anything ... or anybody!” The guy next to him asks him something like, “So how do you feel?” The first guy replies, “So lonely I could die!”
Well, for many years that was just the literal truth for yours truly—right down to that last part.
Even to this day (which I do realize I'm lucky to have lived to see) I ask myself, more often than I'd like, “Why can't I have more friends, like everyone else?” (Note to self: Try not to OD on people's group Facebook photos. Or their Wall posts and comments describing their fun times together.)
When I read about top high schools actually asking seniors—and their teachers and counselors—not to publicize which colleges have accepted them, to avoid hurting the delicate feelings of those who didn't get into Harvard or Yale or Brown (all of which rejected me, by the way) or wherever, I have to laugh and shake my head. Never mind that we're talking about places including Horace Mann and Bronx Science—if you go to school there, you already beat the odds (not to mention many competitors).
I'm living proof that even if everyone else enjoys acceptance and personal affirmation beyond your grasp, and parades it every day like it's nothing—which it is to them of course—you might even find a way to survive.
Memo to some of the top high school kids in New York: Grow up, gird thy loins like the men and women you like to think you've become, and get some perspective! You are spoiled brats who know less about suffering and rejection than my dog does. And I haven't got a dog.
Meanwhile, yes I know that no friendship is always smooth sailing, and sometimes friendship entails sacrifice, conflict and even breakup.
Depending on how I'm feeling, sometimes that sounds to me like telling a kid with leukemia that everyone else gets a sore throat and runny nose once in a while, and some people even get the flu.
Then a little voice pipes up: No, Jeff, in your case it's not leukemia, you self-pitying disgrace. More like lung cancer after decades of smoking four packs a day.
Counterpoint: Either way, leukemia or lung cancer with good friends and most people liking you may be better than what we've got now!
If all this sounds like an echo from years and decades ago, to some extent it is. Way down deep inside this happily married man, multiple-time Toastmasters officer and father-to-be is still the desperately and inconsolably lonely, sad and frustrated child, adolescent and young man.
Because my previous columns have so far been about more abstract concepts, I thought I would share some practical advice on an area in which many autistics struggle: interpreting body language and facial expressions. Obviously this is a topic that could take up an entire book, or an entire library. This will be but a brief introduction to interpreting the musculature dances neurotypicals use to communicate.
The first, and in my opinion the most important, type of nonverbal communication is facial expression. Something that helped me personally in this area as a teenager was the fact that I loved to draw, and drawing is all about learning how to see. In fact, online tutorials made with the intention of teaching artists to draw accurate facial expressions are some of the easiest and most accessible tools for learning to interpret said expressions. One of the best for this purpose is the tutorial by “tracyjb” on the website DeviantART and I recommend it for artists and non-artists alike.
Being a student of physiology and anatomical sciences gives me a benefit when it comes to reading body language and facial expression, simply because it is easier to understand why people make the motor movements they do in response to certain stimuli. Reading body language doesn’t have to mean learning to read the code that neurotypicals naturally speak, it just means learning to interpret the signals the body gives off. Dilated pupils can be an indication of fear, anger, or sexual arousal, for example, because all these things require letting more light into the retina to see better. But cultural elements are very important; an eye-roll isn’t quite a natural process, it’s a learned social response likely developed from the fact that looking away indicates disinterest. Learning both innate physical responses (like flared nostrils, rising color, and smiles that don’t flex the eyes) and learned cultural responses (like eye-rolls, shrugs, and that special eyes-wide-forced-smile at the third person in the group to indicate that the first person is a total weirdo) is essential to building a full picture of facial expression. With time and understanding, I would argue that an autistic can become indeed more proficient than a neurotypical at reading people. Critical analysis beats innate I-don’t-know-why-I-just-know understanding every time.
Body language is easier in some ways and harder in others. Body language is usually more consistent from person to person (within a specific culture) but body language isn’t always as black-and-white and straightforward as its more complicated yet more telling cousin, facial expression. For example, an indication of romantic interest is self-grooming (running fingers through the hair for short hair, twirling or playing with the hair for long hair, etc.) yet self-grooming can also be an indication of nervousness and anxiety. Context is very important with body language. None of these signals are displayed on their own. If a man is running his hand through his hair over and over while breathing heavily with dilated pupils, maybe he’s not being so flirtatious as much as nervous. But if he runs his hand through his hair in a slower, more relaxed way, breathing deeply with dilated pupils, he might just be flirting after all. Crossing the arms or hands in front of the body is typically a defensive, anti-social gesture (little did I know this is why people found me stand-offish) but again, not always. A girl who is crossing her arms in front of herself with her head down while wringing her hands is probably nervous or upset, but a girl who is crossing her arms in front of her while smiling and giggling might be shy and flirtatious.
When one first starts on this nonverbal journey, body language may seem daunting. It can feel like it’s just too complicated, there’s too much to learn, you’ll never be able to master it all. But remember, verbal language is just as complicated. “I once knew a woman with a large white hat with depression,” doesn’t mean that her hat was the one who was depressed. We know these things because of context, the same way we must interpret body language. The human brain has a practically unlimited capacity for learning and understanding. Like anything else, interpreting nonverbal cues takes effort and practice. Cold readers do this for a living, be it as psychics or interrogators. The art of reading people is a skill. Remember, just because this stuff doesn’t come naturally to us doesn’t mean that autistics can’t learn.
This is the time of year when a student’s milestones are often celebrated. I’ve found myself becoming unexpectedly emotional about the milestones reached by those around me. The brother of my daughter’s best friend walked past me the other day in a T-shirt his 5th-grade classmates had autographed. I started tearing up at the thought of the 5th-graders moving on to middle school, no longer seeing the friends they’ve been with on a daily basis for half their young lives as they enroll in an array of different schools. Then while on Facebook, I saw pictures of my best friend’s niece, decked out in cap and gown for her high school graduation. A lump in my throat formed while I thought of her moving out of state later this summer, attending her parents’ alma mater. It seems everywhere I turn, I’m wiping my eyes as children around me reach major milestones.
But then I started to think about how Cameron had reached similar milestones, and I’ve never become emotional over his accomplishments. He’s participated in a ceremony signifying the end of middle school, received various certificates of achievement over the years, and has even gotten a medal for attendance. Call me cynical, but I’m somewhat jaded by award ceremonies where everyone gets an award for something. Perhaps this stems from my own experience as a softball player in 7th grade. The rule was that everyone received a game ball during the season. I received my game ball during the final game. The same game I missed because I was at a Rick Springfield concert. Needless to say, the game ball was not something I cherished. (Which was not the case with my Rick Springfield T-shirt!)
So I’m left wondering why I am experiencing the accomplishments of others with such emotion, and my own son’s accomplishments leave me dry-eyed. I’m a bit ashamed to admit this, but I haven’t even purchased Cameron’s school portrait for the last two years. Perhaps the reason the milestones go by without me tearing up is because deep down I realize how long the road before him stretches. When I think of my best friend’s niece graduating from high school, and all that entails, and then compare that to Cameron earning a high school diploma, I realize that aside from the funny hat and robe, there is very little similarity between the two. While for most seniors, graduation is a giant step forward into adulthood, for a student with ASD, graduation can mean a leap into the abyss. After the party’s over, and the cake crumbs have been vacuumed up, what next? Again, call me cynical, but I’m not finding a wealth of postsecondary educational opportunities out there for a student with a sub-70 IQ. And the programs that are out there focus on things that Cameron has already mastered. Perhaps the reason my emotions have been in check is because those emotions are so mixed. While my heart swells with pride with every accomplishment Cameron makes, I also realize how much further he has to go before his work is done. And if I think about the unknown that lies ahead, I may find myself crying for a different reason entirely.
The first time I ever came out about being autistic publically was when I was a college freshman at Seton Hall University. I remember it like it was yesterday. It was during my Oral Communication class when our professor told us to do a presentation on something we had a passion for. In high school I went to a school for students with learning disabilities (LD). During this time I had become an advocate for disability awareness but never really mentioned to anyone what my disability was because everyone had something so we all knew we were on the same playing field.
In college it was different. While 100 percent of the students in my high school had a learning disability (160 out of 160), in college it was less than one percent (350 out of 5,500). Many of my peers had no idea what autism was. This gave me the opportunity to educate them. It was one of the bigger challenges of my life. That day my presentation was focused on educating about autism, with the concluding statement being about the fact that I was indeed autistic. It led to a standing ovation by my peers and then the beginning of a disability movement at my school.
After taking some time to reflect on those events almost five years ago, I came to realize that not only was this about spreading awareness but also finally realizing and becoming comfortable with who I was as an individual. In high school I couldn’t help but feel that many of the students were weighing themselves down with negativity because of the fact that they were learning disabled. That a learning disability was the deciding factor in whether someone would succeed or fail in life. This is never a concept I wanted to imagine. Instead, I encouraged myself to see my disability as an ability and to focus on my strengths while working on my weaknesses.
This attitude I believe was the reason why I became accepting of myself as an autistic individual in college. The positivity I had about my abilities made any negativity or ignorance that came my way obsolete. It was really that simple and because it was that simple I came to realizations about ways to adapt this into other aspects of my life. From taking up new hobbies, to asking girls out on dates, to doing things I never thought I would see myself do, as long as I saw a positive light shine through nothing could stop me. I was a flashlight of never-ending opportunities and confidence.
Today, being positive and accepting of who I am has even led me to freelance writing. I’ve never seen myself as a great writer before, but when Autism After 16 showed up on my Google news feed one day I knew this could be an opportunity to again educate and spread awareness for disabilities. My goal through this column is to encourage and give tips on how to live your best life possible—autistic or not—based on my experience. The more community-based we make this the better, so feel free to send me your comments and questions as the column goes on.
On the evening of my 27th birthday, I came home to several voicemail messages, but one stood out above the rest. It was from my family, and as I hit play, I felt a wave of loneliness, despite the day I'd had. On my birthday, I'd spent time with wonderful friends and been blessed by their presence and generosity, yet there's something about hearing the voices of your family members that makes you feel (and grieve) the distance that separates you.
The voicemail began with no introduction, save for the soft sound of my mother's voice counting in the background, “And one, two, three!” I knew what was coming next; it's a tradition in our family to call and sing happy birthday to one another. But I didn't expect such a swell of voices; it sounded like my parents had a whole choir and an orchestra backing them up as they sang. And then it hit me: My grandparents were there, singing along with my parents, and my brother Willie was singing and playing the piano to accompany them as well.
They sang "Happy Birthday” together—sometimes on-pitch, sometimes not, but even the off-key moments were beautiful to me—and then each person spoke into the phone individually, saying, “Happy Birthday, Caroline!” in their own specific, heart-wrenching way. It was overwhelming, hearing their voices wish me well one by one, and yet, I never wanted it to end. I felt, paradoxically, like I was both farther away and closer to them than I'd ever been.
And even though I couldn't see Willie playing the piano, I could picture him perfectly, and a swell of pride rose within me. I love that he can use his musical gifts to lead our family in song. I love that, in moments like these, he can be at the center of a celebration and play a vital role.
Yet when I called my parents to say thank you the next day, I heard from our dad that Willie had had a difficult time that afternoon. He'd banged his head and lashed out with aggression at our mom when she was alone with him, before our dad had arrived home from work. My stomach drops when I hear accounts like that; even though Mom came through all right that time, there's always the fear that next time, she might not. Moreover, the trigger for Willie's rage that afternoon was, in fact, his piano; apparently, he'd been practicing a piece and grown increasingly frustrated that he couldn't get it right. We're two peas in a pod, my perfectionist brother and me, but how I wish he could give himself more grace, more room to make mistakes.
So here is how things stand: My brother played me a beautiful serenade for my birthday … and he also hurt himself and tried to hurt our mom the next day. It's a difficult thing, to hold these two truths side-by-side, to accept both as the reality of where Willie is now.
There's a part of me that feels guilty whenever I write about Willie's gifts, because doing so can feel like turning a blind eye to his difficulties. I don't want to negate or deny that Willie has significant behavioral challenges, which my parents have to manage and endure on a regular basis. And yet the capacity for celebrating Willie is essential to me; without it, I'm not sure I'd be able to bear the harder realities. My parents have told me that my stories help them, too. As such, I have to believe that I can—and must—do both: acknowledge Willie's struggles and rejoice in his victories.
In a few short weeks, my husband and I will be moving from Washington, DC to a small town in Alabama, and we're looking forward to this new adventure. Even so, the knowledge that I'll be farther from my New Jersey-based family than ever before is another hard reality. Yet when I listen to my birthday voicemail, I cannot escape a deeper truth: That my family's song sings within me wherever I go … and Willie's the one carrying the tune.
I have been thinking lately about what kinds of writing I want to do in the future. I do enjoy writing these columns, but I also want to further expand my horizons and see what other forms of writing I might be good at and enjoy working in. Thus, I have taken some steps to explore my options while sharpening my writing skills.
I have recently begun writing for my own pleasure for a few hours daily. I generally write down ideas for characters, settings, and other details I may want to include in fictional works such as a novel or short story one day. One of the writing classes I had in college recommended writing daily in this way to keep one’s writing skills fresh, and I do believe that doing this has helped me to compose better ideas and improve as a writer. I can write down whatever comes to my mind during that daily period of time, and later, I can go back and refine my ideas in order that they will work better for the form of writing I choose. It also feels good to get my thoughts down in a written form when they have been buzzing about in my head for long periods of time. In some cases, the ideas continue to form in my head even after I have written them down, evolving into forms which I had not initially anticipated. I enjoy going through the process of refining my ideas into engaging stories and poems, and I hope I will be able to find a way to get them published soon.
I also recently bought and read through a special issue of a magazine about the art of writing and the process of getting published. I thought it had an interesting mix of information and encouragement. I was particularly awed by a featured article which contained snippets of writing advice from various professional writers who had written for the magazine over many decades. A lot of the advice they offered was repeated in other articles elsewhere in the issue. I was amazed that these tips, some of which had been written way back in the 1920s, could still be of great use to me so many years later. I will be taking this information to heart and putting it to good use in my future writing habits. The magazine also contained great information about getting published and finding an agent which I feel will help me to navigate the publishing business in the future.
While I have been working on improving my writing skills, I have also been researching various publications both locally and elsewhere and what they are looking for in terms of writing. I have ruled out some options already because they were very focused on politics or other areas which I have not developed a concrete knowledge or viewpoint of, but I have found that there are still many publications for which I would be interested in writing. In addition, I have learned of a person in my area that is planning on starting an online publication of their own and may be looking for writers. I will be contacting him to see if he would be interested in using me in some capacity. I would like to find some local work so I could become better known within my area, and I also hope that in the future some national publications will become interested in my work as well.
I have also learned that there are some local writing groups in my area that I feel could greatly benefit me in my writing career. I am investigating them at the moment because I have never been to any of their meetings before. From what I understand, they are made up of local writers who are looking to grow their skills. At their meetings, they share examples of their work for other members to critique and offer advice to each other as well. I feel that joining these groups could be very helpful to me because I could get a second opinion of my work apart from myself or my family. I think I might also find some new friends in these groups who share my interest in writing.
I am excited about delving deeper into the world of writing. I enjoy developing my writing skills and looking for further opportunities to write professionally. Each piece of writing I create brings its own challenges and helps me to grow as a writer, and I am keen on seeing what will develop as I continue to write.
As the school year draws to a close for our young people, reflection on things past comes to mind. I had the good fortune to attend three different awards ceremonies for high school students in recent weeks—two at the school where I teach, and one at the school from which my son will be graduating this week. In years past, attendance at ceremonies such as these has been known to leave my son feeling again and again as though he was never going to “find his place.” It was perpetually difficult for him to acknowledge how far he had come when it seemed to him (and yes, sometimes to me too) that he was always not-quite good enough to reach that pinnacle of success we have probably all aspired to at one point or another. Factor in the black-and-white, dualistic thinking that I think is par for the course with the autism spectrum, and we have a perfect storm for self-loathing in the making. Coupled with the anxiety that comes from end-of-school year transition for my guy and others in similar circumstances, awards ceremonies threaten to derail a year’s worth of self-esteem building in one fell swoop.
So I am thrilled to report that each of the three awards ceremonies I attended in the last few weeks ended with smiles, not tears … well, I cried, but that doesn’t count! My little boy received, among other amazing recognitions, a citation from one of our newly-elected state representatives. He was one of two students in his class of over 600 to earn this. And the smile on his face as he jogged up on stage and had that moment in the spotlight made up for so many years of disappointments, of feeling not-quite-good enough. I know all too well how easily the autism spectrum can work against a young person, having been that young person myself a certain number of years ago. It does not take too much of a leap to go from feeling invisible to feeling like a failure. When I look then at the students we honored recently at my school, I can’t help but think of all of the years many, if not most, of them spent in situations where they were either feeling invisible or wishing they were invisible. That place of wanting to be accepted as a part of the world in which we’re living, and then not understanding why something that seems so simple for those around us is so painfully impossible to attain. It becomes easier to withdraw, to stop caring, to stop looking for the approval and acceptance that others appear to have acquired with ease. And that withdrawal looks to be our choice, not unexpected for individuals with autism, right? It’s a vicious circle. This is one of the things that I find most amazing about the environment where I am building my career now. The fact that these young people have the chance to find success in a safe environment, then use those achievements both big and small as a scaffolding to greater achievements and bolstered self-esteem, is why I look forward to going to work every morning. I have to admit, I was downright scared walking into my son’s senior awards assembly. I knew he was receiving some recognition, and he knew that as well. God help me, I was scared that he was going to be getting recognized for extracurricular activities, which are valuable experiences but which I knew would leave him with that same empty feeling with which he’s walked away from more than his share of assemblies. I prepared myself for what I would say to him if he received accolades for something that a hundred other students were getting too (and that has happened). With my anxiety as high as it was, I could only imagine where his was at as the awards got underway. But with the honors he received my joy and relief was palpable. For that moment in time, he had the opportunity to see the gifts which come with AS, rather than the struggles that live barely beneath the surface, waiting to pounce without warning. He had found his place.
I had the exterior of my house painted last week. As part of the process, storm windows were removed, and subsequently leaned against the garage door. I remember thinking to myself, "I hope I don't automatically hit that garage door opener button when I drive up the street." Well, Cameron came home from work, and went about his usual routine of walking the dogs, exiting through the garage door. Oops. Luckily, we only lost one window, but the circumstances surrounding the loss of the window were not brought to my attention until five days later. I thought the crew had moved the windows into the garage at the end of the day, and a window had been broken in the process of moving everything in for the night. It wasn't until I was making my punch list for the completion of the project, and asked about the replacement of the glass that I found out Cameron had been involved.
This incident got me thinking about reasonable expectations for Cameron, by me and by society in general. I would've expected Cameron to have said something to me as soon as the incident occurred. And I'm still not quite sure why he didn't. As soon as I asked him about what had happened, he told me the details. He said he didn't say anything when it happened because he was "frustrated." I have no idea how the painters reacted to him at the time, so I don't know where the source of frustration was. But it's these moments when I'm so tempted to play the autism card. Should I say to the contractor, "Hey, my kid has autism, and he was just following his routine. Your guys shouldn't have left the windows against a functioning garage door."? And then I wonder if the autism card is the appropriate card to play. Is the fact that Cameron has ASD even relevant in this matter? I said I was worried myself about accidentally opening the door, so why is my first instinct to explain Cameron's diagnosis as an excuse for what he did?
As I started mulling over my tendency to play that autism card to excuse Cameron, he gave me another opportunity to go for that card. My daughter had a friend over, and the mother and little brother of the friend were visiting during the drop off. Cameron asked if the friend would be going to the movie we planned to see later, and I said that she wouldn't. Cameron's response, in front of the mother, was, "Good!" I pointed out that it was rude to express joy that someone would not be joining, and he made the situation even better by saying, "Well it's just that brother of hers is so annoying." There are times when I feel like hanging a sign around Cameron's neck that says, "If you think I'm rude, get over it. Because I can't." I guess I have my work cut out for me teaching Cameron that being frustrated is not an excuse for being rude. But I also have my work cut out for me teaching myself that autism needn't be the excuse for everything Cameron does that I don't like. Sometimes a pane in the glass is just a pane in the glass.
Monday morning, my sweet son became violently ill and then collapsed. I did my best to break his fall but all I could do was to keep his head from hitting the brick tile floor. It was evident that he had some sort of extremely vicious stomach virus. It was such that I didn’t have time to be scared at that point, I just went on autopilot.
I helped Cody dress, then got dressed myself. I started to help my son to the car. We walked outside and stood at the stairs. Suddenly I watched his eyes roll back in his head and he started to go down again. This time I managed to keep his head from hitting the railing on the deck. I let him sit for a moment to get his bearings. Then I instructed him to scoot down the stairs on his rear end.
Finally we made it to the bottom of the stairs. Cody stood, and I put his arm around my neck and as quickly as I could, I guided him to the car and helped him in. We then began our 30-mile journey to the hospital.
Upon arrival, I ran inside to grab a wheelchair. Bill met me at the door and helped get Cody out of the car. We wheeled him to the front desk and explained why we were there and they immediately rushed us through the unit doors. There, the nurses and doctors were quick to act.
The nurse attempted to do an orthostatic blood pressure. Lying and sitting he did fine; standing, was another story. She couldn’t get a reading the first time. She tried again but before the cuff was fully inflated Cody began to fall backwards onto the gurney. Upon standing, his blood pressure was falling through the floor.
Blood tests were run and within a short time the results were back. Cody’s white cell count was sky high. His first temperature reading was fine, but when it was taken again a little while later, he was running a low grade fever. The doctor did not hesitate to say, “He needs to be admitted.”
While the staff on the floor had been informed that Cody was autistic, they really were not sure what an overnight stay would entail for him or them. We explained to them that either Bill or I would need to be there with him round the clock for communication purposes.
At first, they were asking Cody questions in the same way they would ask any neurotypical person. They quickly learned that got them nowhere and they needed help.
But there was the HIPPA law to deal with as well. Something hospitals take this very seriously. Cody is legally an adult, so how was this going to work?
Bill and I both carry photocopies of our Legal Guardianship document from the court with us at all times. Bill pulled his out of his wallet and handed it to the nurse. I don’t think I’ve ever seen anyone quite as relieved as she was at that moment. Now we could begin to make some headway toward my son’s care.
IVs were started and antibiotics were on board. A chest X-Ray was taken and a CT scan followed. He received pain relievers and anti-nausea medications to relieve his discomfort. In a short while, they brought him some Sprite, some Jello and some broth. He was able to eat and drink and very soon, he was resting comfortably.
I lay in a recliner next to my son’s bed that night and prayed he would be alright. I stayed awake till about 1:00 a.m. just watching him breathe. And then I finally drifted off to sleep myself. The next day, Cody was well enough to go home.
Now I think about what kind of problems we could have faced had we not been prepared. What would have happened if we had not had that document in our physical possession at that moment when questions of legalities surfaced? Would the doctors and nurses have been legally bound to go strictly on what procedures Cody gave permission for? What if he said no? Would they have given up when they could not get legitimate answers to their questions? I shudder to imagine the horror we could have faced, especially if Cody had not responded to treatment quickly.
“It's too early,” I protest as I roll out of bed. I stumble through my morning routine, and before I know it, I am seated with my husband and the rest of our family on the top deck of a cross-island ferry, riding from one side of Bermuda to another. Bermuda isn't just one island, but an archipelago, and as such, ferries and buses combine to make up the public transit system. We're here on a weeklong cruise to celebrate my parents' 30th wedding anniversary and my grandparents' 60th. Early wakeup call aside, I know that this is a time for being together, and I try to keep my eyes open. But the warmth of the sun makes me sleepy, and it has the same effect on my brother Willie. When I glance over at him, he has fallen fast asleep in his seat next to me. He rests with his mouth open slightly, and seems totally content to doze in the thin plastic seat with people talking and laughing all around him. He has the gift of being able to drift into sleep just about anywhere when he's tired, and I envy it.
But in just a few minutes, the ferry boat rocks, jolting Willie out of his light sleep. He shakes his head and wipes at his eyes, bleary. Still half-asleep, he mumbles the date of his 26th birthday, which is coming up in 2013. (No matter that his 25th birthday has only just passed; for Willie, there is always an ongoing countdown.) Inspired, I take my lightweight jacket and ball it up into a makeshift pillow, which I place on my shoulder. Willie needs no prompt; his head drops immediately to the jacket, and he falls back to sleep for a few more minutes.
There is something enormously comforting in this gesture, the way in which we do not need to speak to understand one another's needs. The simple touch of Willie's head on my shoulder steadies me. I feel connected to my sibling, connected and calm. For all the times when I have not had what Willie needed—be that a calm presence, a greater understanding of his mind, or a solution to his behavioral challenges—in this moment, I do have what he needs. In this specific instant, I can offer him a peaceful place to rest. (And isn't that what we all want: just a few more moments of respite, just a little more peace?)
Yes, Willie will feel anxious on this trip. He will have one difficult night, as well as a few frustrated moments in the days ahead. But for this moment in time, he is resting, and so am I. And in addition to the stressful moments—the times when we will have to count out 10 deep breaths to help Willie to be calm—we will also have times of breathing easy. We will wade into crystal-blue water and search for treasured pieces of sea glass together. The sun will break through the clouds unexpectedly, and shards of glass will glimmer in the light. We will have neglected to apply sufficient sunscreen, and so we will get our perennially pale skin sunburned and look a little bit silly.
We will not have a perfect family vacation, because there is no such thing. There will be times when Willie looks at me with confusion in his eyes; there will be times when I know we're both faking our smiles. Yet when I think of our time in Bermuda, I know I'll remember the moments of true connection. In remembering our vacation—as in remembering our life—everything that is not love eventually falls away. Everything that is love remains.
As Willie falls asleep on my shoulder, the elegant opening lines of Theodore Roethke's poem, “The Waking” run through my mind:
I wake to sleep, and take my waking slow.
I feel my fate in what I cannot fear.
I learn by going where I have to go.
And I know it's true; Willie has taught me that much.
Late one recent evening, walking back from the Metro station where I've left my car for Emily. It's a new neighborhood for me because we've just moved here and we'll be here for a while.
Oh wow. McDonald's. I see it's open 24/7—both drive-through and eat-in. Nice.
I like 24/7 hangouts. I don't often hang out that late at night anymore. But I've always liked neighborhoods with that sort of thing. Campuses, too. The hangout doesn't need to be anything fancy ... a computer lab or fast food joint will do fine. Just so people can pop in at all hours and relax and socialize without worrying about closing time. Not to mention meet new people ... different groups of people tend to come by at different times of day.
That's why I kept vampire hours in my first couple of years of graduate school, hanging out in the 24/7 computer lab. (For some reason, later on they closed it and opened another one, open 20 hours a day. Never could figure that one out.)
Hanging out in McDonald's, coming home any old time ...
Don't mind me. I'm just re-enjoying my past.
Past is the operant term here. Not only with no wife to worry about me, but also no baby someone else would have to watch—and maybe feed and/or change—until I got back.
Not to mention no need to look at event announcements or ask hosts if childcare is available or children are even permitted. No need to do laundry more than maybe once or twice every couple of weeks.
Heck, no need to do without at least seven hours of sleep a night. (I remember being glad when I moved out of my parents' home because finally I'd get to decide when and how long to go to bed. Soon I'll have to sleep when the baby does.)
Not only do the possibilities and responsibilities change, so will my outlook. I'm starting to look at every situation in terms of how dangerous it could be for a toddler. (Each room has just so many electrical outlets, and they're so naked! And why are medicine bottles so easy to open, anyway?)
Change is hard, and doubly so for Aspies. But now, here's a change that's (hopefully!) never changing back. I'm never going to be even close to the same person I was, ever again. Not after even a short time changing diapers, feeding a squalling child, limiting the places I go to those where my little one will be welcome (and safe, and not just physically either) unless I care to pay for a babysitter.
Conflicts? I'm not going to answer just for myself anymore. Not once I get the first complaint about my son's or daughter's yelling at another kid or not doing homework or lying.
What's important anymore? Parents have to pick their battles.
In a few years, I'll go back and re-read my old columns, blog posts and online discussions and see which ones are still relevant. Will I recognize my old self? Will I like what I see in the mirror now?
Either way, I knew I was going to cry.
My son answered the phone, covered the mouthpiece, and whispered the admission director’s name. As I wheeled closer to take it from his hands, my emotions bubbled up, filling my eyes with all my heart contained.
Whether the answer was “yes” or “no,” I knew I was going to cry.
I took a deep breath.
She began with an apology. “We’re sorry it took so long to get back to you.”
The journey began months ago, when Madison began to struggle at school. Limited in verbal expression, she relies on structure, routine, and predictability to function at her best. “Schedule please,” is by far her most repeated phrase as she continually seeks to order her world.
But her world had become too complex for her to order. She needed my help.
Although she had flourished in her current school, her behaviors had begun to escalate, courtesy of rising hormones, we thought. We soon realized that the program no longer met her needs. The search for a new placement began.
“Madison has been accepted …” I heard the voice say. I slumped forward in my wheelchair, chin to chest, palm to head, and pressed the phone hard into my ear.
“Thank you,” was all I could say.
That phone call changed my daughter’s life six years ago.
Last week, another phone call changed it again; we learned Madison’s adult placement had been finalized.
Again, I cried.
A search that began two years ago was finally complete—at least for now. In the world of autism, I’ve learned that nothing is ever fully final—there are just too many variables.
Meanwhile, my other children prepare for their own life-changing milestones.
My son graduates from high school, heading 3000 miles away to college.
My daughter is getting married.
And once more, emotionally-charged expectations fill my heart.
As parents of children with autism, I think we are entitled to feel different and special in the extraordinary effort it takes to parent their unique and ever-changing needs. We continually seek resources while at the same time assessing their abilities and capacities to learn and grow.
But, if we’re honest, isn’t it the same set of skills required for our other children?
Granted, that journey is less lonely and perhaps filled with more options.
But in the end, they, too, have changing variables and need our help as they seek to order their lives.
We struggle as they struggle—and celebrate as they celebrate.
We take deep breaths for them and with them.
The same, but different.
It seems I go through the same existential crisis year after year: To ESY or not to ESY? Cameron hates the idea of "Summer School," even if you dress it up with an acronym like ESY. And I can't say that I blame him. On the one hand, there is a lot to be said for the structure and continuation of support services provided through the Extended School Year. Not to mention, there's no direct out-of-pocket expense involved. But on the other hand, by design, there's no remediation of skills in ESY. The intent is to keep the status quo, so nothing lost, but nothing gained either. And who wants to be on a school bus by 7:00 a.m. all summer? So, it is with some trepidation that I've decided to say no to ESY for Cameron this year, and have challenged myself to establish an equally structured summer for him, and perhaps even more meaningful. And thus, the creation of MASSA: Mom's Awesome Summer School Alternative.
The key to MASSA's success is making sure Cameron has something to do. I'm still holding out hope that a paid employment opportunity will present itself, but until then, Cameron's manager at Angelico Pizzeria has agreed to allow Cameron to continue indefinitely. However, a couple of hours of washing dishes each day is not enough to fill out a summer. In last week's column, I mentioned hiring a social mentor for Cameron. This is an aspect of MASSA that I'm most excited about. This person will be charged with overseeing Cameron's interactions with the community in general. If they go to a restaurant, I want to make sure Cameron leaves an appropriate tip. If they agree to meet at a museum, Cameron should arrive on time, or call to say when he'll arrive. I'm hoping Cameron's social mentor might even help Cameron find a volunteer opportunity that will earn him credit towards his community service graduation requirement. And perhaps the social mentor will help Cameron approach potential employers about available opportunities. There are endless opportunities in which a social mentor could help Cameron become more independent, all crammed into about four to six hours a week. And, it's far more appropriate for Cameron to do all these things with a hip, young, pretty social mentor, as opposed to his mommy!
You may now be asking, "Where can I find a social mentor for my young person?" Well, this is one instance in which I cannot recommend my dear friend Google. This is situation that calls for a dash of creativity and a fair amount of parental intuition. Cameron's social mentor worked with him last year at the Smithsonian All-Access Camp, and when I spoke with her at the camp's conclusion, I was blown away by the insight she had developed into Cameron in such a short time. I've learned from years of experience that when you find someone who works well with your child, you keep in touch with that person. And as I've learned from firsthand experience, people who work in the field of supporting students with disabilities are not wealthy from their incomes. Therefore, many are open to side employment opportunities. If you're looking for a social mentor, think of someone with whom your child has worked with before and with whom you found it easy to communicate. Don't stop the search with past teachers. Consider young adult relatives that have had a good relationship with your child, provide a little guidance for activities, and send them off into the world together. If the list of potential mentors is still empty, look into nearby universities that offer a special education degree program. Universities often have a job posting website that the public has access to. This is where my friend Google can come in handy, in as much as finding a place to post the job description and in researching any applicants. It's relatively easy to run a background check on anyone these days.
The decision to decline ESY services for Cameron in lieu of MASSA did have some financial strings attached. ESY is paid for by the school system, and by declining I'm left paying for, among other things, the social mentor's time and the cost of any activities she and Cameron schedule. But then I considered the expense of sending my 9-year-old daughter to two weeks of the science camp she asked to attend, and I realize how valuable a proposition it is to hire a social mentor. Of course, you'll have to check back in September to see how successful the inaugural year of MASSA was, but I suspect the valuation with be "priceless."
You may have read my column some time ago, about how one of Cody’s favorite pastimes is going antique shopping. We had not gotten a chance to do that for a while but over the holiday weekend we were afforded that opportunity. And this time Cody surprised me.
The morning started out pretty much status quo. I went to wake Cody up. I said, “Cody, would you like to go antiquing or should we just stay home?” I felt this tremendous rush of air then all of the sudden, he was no longer in horizontal mode, but sitting at the kitchen table asking for his coffee. When I gave it to him, he chugged it down, inhaled his breakfast, and then hurried to the bathroom to brush his teeth and get dressed. Finally, we laced up the power shopping shoes and we were off.
One of our favorite places to go is a mid-sized town about an hour away where antique shops are everywhere. When we go there it is safe to say that we will be there for the duration of the day and sometimes into the evening.
We arrived at our first store. Cody was giggly and dancing with excitement. We entered the building and within no more than a few short minutes our first bargain was found. Then we were all giggly and dancing with excitement.
While Bill and I shopped, Cody did his normal routine of pacing up and down the aisles, checking everything out and grinning from ear to ear. Seldom does he ever touch anything. Sometimes he will stop and look at things—poring over them like a mad archeologist who just discovered some new piece of history from a time long past. But rarely does he ever ask to buy anything. Well, today he did!
He spotted a small puzzle that was made somewhat on the same principle as a Rubik’s Cube. When configured properly, a picture of Batman appeared. This is what Cody wanted to buy. He was adamant about it. But he didn’t want to buy it for himself. He wanted to give it to his Occupational Tech, Stephen. He knows Stephen loves to collect Batman memorabilia.
This action was somewhat of an epiphany to me. It dawned on me that while my son has always had a loving soul, he also has the ability to think of others. What they might like. Even someone like Stephen, who has only been a part of Cody’s life for a few short months.
Stephen and Bill had discussed Stephen’s passion for collecting Batman comic books about a week earlier. Cody was present at the time but did not participate in the conversation and made no mention of it later. So when he made his desire to buy this item for Stephen known to us, it was clear how much he is aware of the world around him—that he isn’t just oblivious to events that take place in spite of how it may appear to others. He really pays attention to things that others may consider insignificant at the time.
The very fact that he collected and stored this information for use at a later date is very telling of his level of awareness and how much his thought processes can and do work like that of a loving, caring neurotypical peer who will put another before himself. I hesitate to say all other peers, because there is so much evidence that suggests many young people around the same age as my son have a much more selfish mentality. Needless to say, I consider myself most blessed that Cody isn’t like that. And I am extremely proud of him!
Cody gave Stephen the puzzle yesterday. Stephen was also in awe of Cody’s display of thoughtfulness. He didn’t care about the fact the puzzle cost all of a quarter. He was delighted that he was thought of outside of the realms of his job and that it all came from a two-minute conversation that Cody simply overheard over a week ago.
Cody has taught us all a lesson over these last few days. Simply because a person lacks what is perceived by society as the so-called normal social behaviors it doesn’t mean that person lacks the ability to love and think of what might warm the heart of another. Yet so often this misguided judgment is passed upon them. Perhaps this quote (commonly credited to Albert Einstein) applies here:
“Everybody is a genius. But if you judge a fish by its ability to climb a tree it will live its whole life believing that it is stupid."
“I try to make a point to be thankful for the things we do have,” she said. “You can get so fixated on what's difficult that you can lose sight of what's good.” I nodded vigorously. Even though she couldn't see me, even though we were only talking on the phone, I couldn't help myself. I'd been talking with Dilshad D. Ali for about thirty minutes, but I'd felt from the first that I'd found a kindred spirit.
Dilshad D. Ali's son is a preteen on the spectrum who struggles with self-injurious behavior (SIB). I'd reached out with a request to interview Dilshad as background research while writing an article about SIB. It was a piece I both loved and hated; a piece that I needed to write and hated to have to. I'd finished a first draft, but I needed more personal input from families. Though I put out queries, I kept striking out. SIB is a difficult subject, and I wasn't surprised when the response to my request was nil. Fortunately, I'd read an article by Dilshad on autism, ritual, and faith that spoke both to my heart and to my need to interview parents on their experiences with SIB. The vulnerability with which she shared her experience gave me hope that she'd accept my interview request, and as such, I was determined to reach out to her. Through a friend of a friend, I was able to get in touch and ultimately set up an interview.
And the beautiful thing about the interview was that, though I set it up in hopes that it would make for a better and more engaging article for others to read, the interview helped me most of all. I barely needed to glance at my notes; question flowed seamlessly into question, and Dilshad's responses took the form of short stories, snippets of her family life. Listening, I felt as though the experience was akin to looking in a mirror; as she talked, I saw how our experiences reflected one another's. She described the tests her son had undergone, and outlined all the possible causes the support team had considered for the SIB … and it was so familiar, because they were the same things that my parents have done for Willie.
Her words traversed the same terrain that our family has covered. She even used some of the same phraseology I've employed to describe Willie's outbursts, such as, “[He goes from] zero to 60 in no time,” and, “It's like Jekyll and Hyde.” She was speaking my language, and I felt waves of relief. My family and I were not alone. We weren't crazy. We weren't the only ones flummoxed, confused, and wondering how and when the SIB would ever stop, how and when things would ever come out right.
Further, we weren't the only ones struggling to keep our faith in a time of trial. As Dilshad wrote, “When you’re in the throes of helping your severely autistic son live his life, when your prayers turn from hopes of recovery and independence to just wanting him to be happy and at peace, when you beseech God time after time and still see your son suffering, when you see your entire family affected by one child’s disability, faith and trust can grow tenuous.”
Ironically enough, reading those words helped me to regain faith; her transparency helped to lift the burden of isolation I'd felt. As we talked on the phone, we commiserated and we laughed; we held sorrow and we held out hope. And in the end, she said what I'd known to be true all along: That love for her son was what kept her and her family going. Love that let go of expectations and just kept marching on, day in and day out. And as she said it, I felt how good it was that we were talking, we who were walking the same uncertain, winding road together. Somehow, I couldn't help but hope that it would lead to a beautiful place.
I’ve come down with an early case of the “Bah Humbugs” this year.
Last Tuesday my sister Connie had to have a surgery.
Here's what really gets to us about the holiday season. It's not the way advertisers assault us, though that's troubling.
By the time you read this, I will have returned from a week’s vacation in Florida with my family.
Schedule-based living, however, can be a tricky proposition. On the one hand, a schedule orders the day, the expectations, and is comforting to Madison who has difficulty with transitions....
The search for a postsecondary program for a student like Cameron is not much fun. It’s actually pretty awful.
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