No. Just two little letters. So easy to spell, but so hard to say. At least for me anyway. Yesterday I received a call from the executive director at Cameron's school, asking if I would consider being this year's auction chair. Of course I said yes. But now I'm wondering if it's going to cost me months of psychotherapy. Am I crazy to take this on? I have no idea how to chair a school auction! Aren't auctions a bit like the Olympic Games, as in they're supposed to be "the best ever"? I assume the chairperson is expected to top the previous year's fundraising, make sure everyone has more fun than at any prior school event, and build a sense of community for those newcomers in the midst. I know how to throw a party, but when it comes to meeting the above expectations I get a little nervous.
All this pressure has me thinking: How would Cameron feel if he were in my shoes? Would he be nervous? If you don't abide by societal norms, does that mean you don't feel the pressure to live up to expectations society has of us? I don't desire the freedom to belch and scratch in public, but I'm finding myself daydreaming about what it would be like to not care what others think of my actions. I'd love the freedom to just do what I want, without regard to how others feel towards me. Just for a day.
What is it like to be Cameron in society? I would really like to know. Is he making an effort just because he thinks that's what I want him to do, or does he have an internal desire to fit in? I can't answer that question with any degree of certainty. I can't even tell you whether or not Cameron realizes he's different from most people. I've told him he's different, but did that hurt his feelings? Does he care?
My gut tells me that Cameron wants to fit in. While at a restaurant recently, I asked the waiter for his recommendation between two starters I was considering. When it came time for dessert, Cameron asked the waiter which sounded better to him: a selection of ice cream and sorbets or chocolate soufflé? When the waiter left, Cameron told me he had seen me ask the waiter for help, so he decided to do it too. I was thrilled he asked the waiter, and didn't ask me to chime in. Of course, I had my answer ready for him, but was pleasantly surprised I didn't need to offer it. (The soufflé was delicious, by the way.)
So maybe when it comes to dealing with my anxiety about the school auction, I should borrow a page from Cameron's guide. I should find someone that sets a good example of how to be successful, and emulate that person. Whether or not Cameron emulates because he innately wants to fit in, or because he's been conditioned to do so by years of prompting doesn't really matter much to me. The fact he makes the effort is what matters.
The end of the semester is drawing near, and I am relieved that my current work schedule will soon be coming to an end, and I will soon be able to relax for a few weeks before my last semester of college begins.
However, I am dreading the due dates for my various final assignments and the sudden spike in difficulty they have taken. If my college experience as of right now were a baseball game, it would be the bottom of the ninth inning with bases loaded, and I would have to hit a home run to bring everyone in and win.
Up through the Thanksgiving weekend, I did not have too much difficulty with my courses. The only assignment that had required a lot more work than usual was a midterm with two essays. I had to work into the night for several nights in a row in order to get that assignment done, and during this period, my spirits sank lower and lower. I like to get finished with my work earlier in the evening so I can have a little time to unwind, but in order to get the midterm done, I had to stay up past 1:00 a.m. to refine my thoughts and ideas. My misery subsided as soon as I handed the assignment in, but I knew it was only a matter of time before the final exam would be due.
My troubles began once again as Thanksgiving approached. I had a bibliographic essay for a course which was due just before Thanksgiving, and it required considerable work. It had been quite a while since I had done the midterm, so I was caught slightly off guard when I had to work into the late night for two straight nights to complete this assignment. Fortunately, I diligently completed the work and was able to celebrate Thanksgiving with my family, watch the parade on television, and have an entire day without having to worry about college work. It was a great feeling of freedom and relaxation. My family and I made quite the day of it. We visited with both sides of our family and had a great time.
My fun continued over the rest of the Thanksgiving weekend. I still had to do some college work, but the majority of my time was dedicated to doing some fun activities with the rest of my extended family. I went over to my uncle’s house to visit, and I played video games with some of my cousins. I was the lead singer for our “Guitar Hero” band. On Sunday, my family and some of my aunts and uncles headed to a nearby antique show. We stayed for a few hours, and I was able to buy some items which suited my interests, and which I probably would never have known about had I not gone that day. All of these activities were fun diversions for me, and I feel that they were the calm I needed before the new storm of work came.
In the past few days, most of my mirth has faded away because of two different final assignments for two of my courses which have predominated over my regular work. One of them is a final exam, again with two essays due, which requires a lot of work to complete. I had to head out to the college library and a public library near my home a few days ago to collect books which will provide research material for the essays. With the help of the librarian, finding them proved to be a fairly simple endeavor, but I am hoping and praying fervently that I will not have to search through them relentlessly for information only to find that they do not have what I am looking for. When I did the last exam, I ran into this exact same situation and I did not have a lot of time to remedy it. Luckily, I was able to find some different pieces of information in the books which proved to be useful and completed the essays with only hours to spare. I hope that I will have more time to complete the current essays and that the research for them will go more smoothly. It was nerve-racking.
The other assignment is a combination of two different activities. First, I have to write abstracts of two research articles I found on the college library’s database, again, with the help of the librarian. This was particularly interesting because I also learned a new skill since I had never had to use research articles before and had never had to find them. The librarian showed me step-by-step how to access them.
After I write the abstracts, I then have to write a one-page essay on whether I agree or disagree with what one of the articles says. As this is all new to me, I am finding it a bit stressful, but I am pushing forward.
I will spend the last couple of weeks of the semester completing these final exams and assignments. I cannot wait until it will all be done and over with for another semester. I am looking forward to Christmas and relaxing on the college break. For now, I will do the best I can to get through my tough workload and hopefully make it out to the other side with good grades and more knowledge.
First, I see the change in mood. What was once a lighthearted and peaceful expression on Cody’s face is now a solemn one, the one we might get in the beginning of a brewing storm. Then the edge begins to appear on the nerves. Pacing up and down the hallway, stimming by twirling his drumstick, a pencil, pen or any other long, thin object he can find and the repetitive use of negative phrases are all Cody’s classic signs of building anxiety. Anxiety gives way to frustration which manifests itself in the form of stomping, escalating verbalization of negativity, and perhaps banging his drumsticks on the walls or furniture. And then the storm erupts. To witness my son pounding himself in the head and face with his fists, yelling and screaming as if he was in the most excruciating of all pain, and attempting to do things such as charge full force through a plate glass window has been both terrifying and heartbreaking in a deeply profound way.
Cody was always rambunctious as a child. Like many children with autism, he had a difficult time with knowing where his body was in space. His gross motor skills took much longer to develop then that of neurotypical children. His ankles were weak and so sprains and bruises were common. While his elementary teacher at school was attuned to how easily he would fall and how often a scrape or bruise would appear, it became a different situation when he entered middle school and his gross motor skills began to finally function properly more often. So because he was becoming more coordinated, falls were not always seen at school as they had been in the past. When he fell and bruised his arm at his grandmother’s house and went to school the next day, his middle school teacher thought it necessary to report it to Child Protective Services and we suddenly found ourselves under investigation for child abuse, even though there was a mountain of documentation of falls, accidents, bruises and other minor injuries that had happened at school. I was both mortified and petrified of what the outcome of the investigation would be.
We met with the investigator once and explained what had happened and also informed her of evidence of many of the same types of incidents that had been documented during his elementary years in school. The interview with her ended after an hour or so; the investigation was quickly dropped and we were absolved of any wrong doing. But while it was worrisome enough when bruises and scrapes were due to accidents, there were also those times when they were self-inflicted. For any mother who loves her child, this situation is a complete, living nightmare.
Cody’s years of puberty were the worst. While we had noticed in the past there were definite triggers to Cody’s tantrums and bouts of self-injury, we began to see them manifest without warning and with no apparent cause. One moment he would seem perfectly happy and the next he was screaming and banging his head on the floor. Fortunately, I have more upper body strength than many women. And I knew how to perform a bear hug restraint without causing injury to Cody or myself. Doing a restraint like this requires the knowledge to do so without impeding respiratory and circulatory function, so extreme caution must be exercised. We often sat on the floor, Cody on my lap with his back against my chest and my arms around his chest and arms, while I clasped my left wrist in a death grip with my right hand until his rage subsided.
We desperately sought any suggestions from Cody’s doctors. Their only answer was a higher dosage of medications or, “Let’s try a different one.” Many of the drugs we tried had little or no effect, and others exacerbated the problem tremendously. There were times when he would fly into a blind rage and not only attempt to hurt himself, but others as well. I was not excluded from being subjected to flying fists, biting and one attempt at choking.
Thank God these outbursts became less and less frequent, and much less volatile as Cody got older and now when we do see frustration building, it’s much easier to redirect his attention in a positive direction. Sometimes, we give him a warning of consequences such as having to stay home in lieu of an outing, or we may have him do something constructive such as practicing his typing on his computer. While he may be reluctant to comply with our directives at first, it is usually not very long before sound reasoning takes over, he employs better judgment, and the meltdown is averted.
Amidst the hustle and bustle of this holiday season, it may help to remember that one of the most precious gifts we can give to one another is, in fact, an intangible: our honest, undivided attention. Real attention can be transformative. Another person's focused attention can call forth stories and music we didn't know we had in us. It can allay doubt and discouragement, helping us to be honest and brave. In turn, paying attention to another person can offer us insight into their minds and hearts, and a feeling of true, substantive connection.
I say this because I remember a significant moment last winter in which the power of attention was made manifest for me. My husband Jonathan and I had traveled to New Jersey to visit my family for the week. One day, my aunt, uncle and cousins came to visit us as well. The house was full, and so, predictably, my brother Willie retreated into the basement after greeting our guests. He emerged before supper, and led us in prayer before we ate. He was in good spirits, and so it seemed there would be no destruction of person or property that day. But the real surprise of the evening came after the meal, when he walked over to his keyboard and started playing songs for us.
Instinctively, we rose from the table and gathered around the piano. We stood in small clusters, forming a loose half-circle behind Willie as he played. He ran through his repertoire for us, pausing briefly between each piece for our words of praise and (soft) applause.
For the grand finale, he began to play, “The Sound of Music.” As he played the sweet notes, the song's lyrics ran through my mind. Suddenly, the song became personal: My heart will be blessed with the sound of music.
It wasn't simply the clear tones of my brother's playing that astonished me that night. It was the manner in which he played: purposeful, strong, and confident. After years of witnessing his struggles, seeing him in his element was more than I could have imagined or hoped for. In fact, it made me want to weep with gratitude, and I could tell I wasn't the only one. The group of us, usually so merry together, fell silent before Willie's simple songs. As we stood there in quiet thanksgiving, I had the sense that this specific music was born not only from my brother's special talent, but from our collective witness. We stopped to listen to all he had to offer, and that offering was stunning in its beauty.
Since that experience, I've made an effort to stop multi-tasking when I'm spending time with beloved people. It's a challenge; in fact, it's a counter-cultural thing to do. I don't know about you, but I've experienced plenty of people checking cell phones during conversations and updating their status during meals. And while all these things by themselves may seem innocuous, what they add up to is distraction. Lack of attention. The moment, missed. But when we do pay attention? It can translate to sharing the sacred.
As Willie ended his playing that night, the original song lyrics stopped running through my mind, and these verses took their place:
You play, “The Sound of Music” for us.
We listen with pride in every right note.
My musical brother is giving us a concert.
These hands that bring us music punch walls.
These feet, pushing pedals, kick and thrash.
The man in control is, at times, out-of-control.
How could this happen? I ask. And how can I not
believe, seeing it? Sometimes miracles look like:
someone playing piano, everyone paying attention.
Driving up to New York to spend Thanksgiving with my family:
Me behind the wheel and singing: “Ninety-nine bottles of beer on the wall, 99 bottles of beer. If one of those bottles should happen to fall, 98 bottles of beer on the wall! Ninety-eight bottles of beer on the wall, 98 bottles of beer. If one of those bottles should happen to fall, 97 bottles of beer on the wall...”
My wife, Emily, chuckling: “Oh, that song! That was our favorite song to annoy the driver on the school bus.”
Me, thinking: “Oh, how cute. I guess she likes that song since she has happy memories about it. And hey, now I'm the driver and I don't mind it!”
Me, singing: “...Ninety-seven bottles of beer! If one of those bottles should happen to fall, 96 bottles of beer on the wall! Ninety-six bottles of beer on the wall, 96 bottles of beer! If one of those bottles should happen to fall, 95 bottles of beer on the wall...”
Emily, clearing her throat: “Are you going to sing the whole thing?”
Me: “Sure. Aren't you looking forward to that?”
Emily: “Not especially.”
Me, thinking: “Hmm, OK she doesn't dislike the song, she just doesn't especially like it.”
Me, thinking: “Wait a second. Maybe I need to dial up that phrase a notch. NTs like Emily—especially female NTs—tend to phrase things gently.”
Me, thinking: “Keep in mind, this is a long car trip. It's going to be an hour or two, minimum, before our first chance to get out of the car even briefly. This is not like, say, walking along the sidewalk—where she can just speed up, slow down, cross the street or even turn back if she doesn't like what I'm singing.”
Me, thinking: “Hmm, why did she make a point of mentioning that the song annoyed the driver? Does that mean it could easily annoy others? And if so, why is she saying that?”
Me, thinking: “Does 'Not especially' perhaps mean 'Not if you paid me to listen'?”
Me, thinking: “And if that's the case, what might she do, while we're in this enclosed space? Turn the radio—or maybe one of her DVDs—full blast? Turn the heat up all the way?”
Me, thinking: “Heck, what might she do any time—possibly get upset and let me have it with both barrels later on?”
Me, thinking: “Hmmm, do we have something addressing this? Well, we already agreed that when she gets to listen to what she wants, I get the car temperature I want. And it's nice and cool right now.”
Me, thinking: “Also, is this really worth making her unhappy? If our places were reversed, would I like her to cut down on the karaoke?”
Me: “No problem, hon. Hey, this is interesting--we've got at least a few Deep Southerners on the road—a Clemson decal here, a Florida license plate there and a Georgia tag over there...”
As much as I would like to believe otherwise, there are many times in the course of our day-to-day lives where those of us on the autism spectrum will need to be able to “fit in.” For some, many of the skills required to pull this off will come naturally. For others, there will be bumps in the road. Even for those who may appear neurotypical in any number of situations, there will be “soft” skills that require practice, practice, practice. As a teacher, my job involves teaching those soft skills. As a parent, my job involves modeling those soft skills. And as an adult on the autism spectrum, my job involves … well … practice, practice, practice. The more I think I know about how to cope in this world, the less I seem to actually understand.
Over the recent holiday weekend, I attended my high school reunion. (Forgive me if I don’t share how many years past graduation the reunion was commemorating!) If I were to give myself a report card grade on how I handled myself from a social standpoint, I daresay this particular experience might have pulled my GPA down a bit. I am reasonably confident that I handled most of the social niceties fairly well. I exhibited expected levels of eye contact, greeted those whom I had not seen in more than a few years with smiles and hugs, and re-introduced myself as needed. Thankfully, I had the good fortune of being among those who physically look better today than I did in high school! When it came to making conversation with friends I have kept in contact with, the only difficulty I encountered came from having to process conversational exchanges in a noisy room. I struggle with that regardless of the particulars of the situation, and when the band in the other section of the establishment began playing, my ability to converse freely took a nosedive. So those were the positives. On a scale of one to 10, with a one being Sheldon Cooper from “The Big Bang Theory” and a 10 being James Bond, I perhaps hovered somewhere around a solid six or even seven when it came to basic communication skills. But almost from the start, I could actually see the differences in the way I was conducting myself in comparison to 99% of the others in the room. While it was fine to smile at and hug an old acquaintance, I quite honestly had very little interest in going to the next expected level. There were one or two others that I have been “friends” with on Facebook for a couple of years, so that paved the way for brief conversations about topics I knew we had in common. To my pleasant surprise, though, I did not spend most of the evening beating myself up for what I was unable to do—mingle in the room, approach people I knew, start a conversation beyond the safety of the table at which I had pretty much planted myself. Knowing how my brain works now made the evening much less guilt-ridden than it would have been if this reunion had been five years ago. Better yet, I did not choose to turn to any coping strategies that could ultimately do more harm than good—in other words, the open bar held no appeal!
Situations such as this remind me of the question, if someone offered me $1 million, and all I had to do was make a half-court free throw shot on a professional court on the first try, would I be able to? Of course not. Even with the best motivation in the world, there are some things I simply cannot do. I can picture them in my mind, I can explain how they should be done, I can write a task analysis to break them down as well as any behavior analyst, but when push comes to shove I personally cannot accomplish the task. I know what it looks like when done correctly—at the reunion, I could see any number of individuals behaving as one would expect people to behave in such a situation. I could see myself, and know that the way I was behaving—or not behaving—was outside the norm. I can also recognize the steps I did take that I would not have taken before my diagnosis. These are steps I take because I am now able to recognize those soft skills that are so hard for me and I know that even if it will be incredibly hard to accomplish certain tasks, I owe it to myself to try. So even if in the moment, I have absolutely no desire to smile at and make eye contact with and even hug the person who pretty much tormented me for most of my childhood and adolescence, I understand that this is what is expected at a high school reunion. We let bygones be bygones. Having practiced to improve in the tasks I was able to successfully complete at the reunion, I know that with time some of the other soft skills I am so weak in now may improve—with practice. It won’t happen overnight for me any more than it will happen overnight for my children or my students. More importantly, I know that if I can continue to learn from experiences such as these about what worked, what didn’t work, what was hard but worth the effort and what I would just as soon pass on next time around, it will only make me a stronger teacher, a better mom, and a more confident Aspie.
We're that family. That one that has dinner together every night, at an actual table, and the adults at the table do their best to get the offspring to converse. Well, my eight-year- old daughter has no problems in the conversation area. I guess it's more accurate to say the three of us try to get Cameron to interact with us. One easy way we've found of engaging Cameron is through board games. We regularly clear the table and grab from our collection of family-friendly games which are close at hand. Some of our favorites are Uno, Sleeping Queens, Spot It and Zingo. And unlike eating salad, Cameron actually enjoys this bit of our dinner ritual. (Until we suggest playing Spoons, but that's another story.)
I was recently in our neighborhood toy store, and grabbed one of those impulse buys at the register. It was a little round box that said "Family Dinner Box of Questions." It cost around $5, and it was the best $5 I've ever spent. Inside this little box are 42 questions designed to start a conversation. There's no real winner or loser in this game. At least I don't think there is, as I never read the instructions, but instead just opened the box and started asking questions to the family. Playing this game has been an eye opening experience.
Last night, the question read was: "What is the most important lesson your parents have taught you?" My husband replied that his parents instilled in him a moral compass and a sense for what is right and wrong. I said my parents taught me the importance of family time and being together as a unit. When it was Cameron's turn to respond, he didn't even have to think about his answer. He said, "The most important thing Mom has taught me is how to ride the Metro. Now I can go places on my own. And I don't have to worry about running out of money on my Metro card because she taught me how to put more money on it using my bank card. She also taught me how to track how much money I have in the bank by putting things on that list." I wish someone had taken a picture of my face at that moment! I wanted to do the Snoopy dance on our kitchen table!
It's one thing to teach our children valuable life lessons. But when a child actually expresses gratitude and appreciation for learning that lesson … How often does that happen?
Of course, I've previously pontificated about Cameron's Metro riding capabilities. He's now better and more confident about it than I am myself. In August, I opened a checking account for Cameron and started paying him his allowance in monthly installments via online deposits. In addition to his spending money, I deposit money for his prescription co-pays and his Metro card fare. He and I went over his monthly budget, and he withdraws his weekly allowance from the ATM machine. When his inhaler counter reaches 10, he orders a refill on the phone, and picks it up on his own when it's ready. He understands when to use his debit card and when to use cash, based on the instructions I've given him. I've made a spreadsheet that is his checkbook register, and he tracks his purchases diligently. He doesn't rely on his online banking application to obtain his balance. He understands to importance of tracking his debits himself.
All these lessons are very important independent living skills. Ones, I might add, that cost a pretty penny if you're paying someone to teach them in a postsecondary environment. I'm fortunate that Cameron has taken these lessons to heart, and has made the job of teaching them to him an easy one. But the best thing by far is the fact that Cameron understands the value of these lessons, and even better, he has expressed gratitude for learning these life skills. Cue the Snoopy Dance theme.
When you have a child with autism and you come from a large family, holiday get-togethers can be riddled with chaos.
One of the characteristics of autism for many people on the spectrum is hypersensitive hearing. Cody is one who exhibits this trait. Thus a large family gathering filled with children and people of all ages can be overwhelming. The talking and laughing and building fires, cooking, setting tables, coming in and out, the noise of clanking pots and pans, ringing of door bells, the ringing of crystal glasses when they strike against each other and the numerous other sounds that take place during this festive time, may seem warm and endearing to many. But to someone with autism it can sound like a war zone.
The fright and frustration Cody has portrayed in the past has led us to rethink how we celebrate the holidays. While Cody is very loving to each of his extended family members on a one-to-one basis, he does not cope well when we are all together. We have often seen Cody fly into tantrums, engage in self-injurious behaviors—the most common for him is hitting himself in the head—yell at the smaller children to “be quiet”¸ and pace the hallway like a caged tiger. Needless to say, witnessing this each holiday or family gathering has grown more heartbreaking with each occasion.
We have tried many things to alleviate the stress of large gatherings for Cody. We have tried taking him outside, away from all the noise. We have tried keeping him close so he would feel secure. But eventually all the racket would become too much for him and we knew it was time to go home.
Family didn’t always understand. Sometimes they thought we were just being anti-social and their feelings were hurt. I tried explaining but when I only see them once or twice a year, and they are seldom around Cody, it was hard for them to comprehend why we had this seemingly unruly child. Thank God they have come to understand and accept him for who he is.
Over the last couple of years we have had our own holiday celebrations at home but invited only a few family members here at a time. This worked better because Cody knew his room was right there where he could go and get away from any loud talking or laughing. He knew his computer was downstairs in the den where he could go and find an emotional escape by drawing his pictures on his computer. And though he was calmer and more collected in this setting, he would start getting anxious after several hours of people being in his domain, who did not live there. In other words, it was as if he were having all the signs of getting ready to say, “Why don’t these people go home?”
So this year we celebrated our Thanksgiving with just the four of us. Nobody had to get dressed up in any uncomfortable clothes. We didn’t have the extra noise of other people in our house. And Cody could do all of his normal activities as he pleased. He was much more at ease.
I still put on the pretty table cloth and we all used the special dishes we don’t use every day. I lit candles for the table and put the butter in the glass butter dish I use for company. And we even used the cloth napkins with the pretty wooden napkin rings. I made Cornish hens instead of turkey and Cody felt like he had his own little turkey all to himself. I made Cody’s favorite dessert for Thanksgiving, which is pumpkin pie with whipped cream on top.
It was a very peaceful day and for that … Cody, Bill and I are all very thankful!
Last Thursday, I attended a L'Arche supper that ended, as L'Arche suppers always do, with prayer time. (L'Arche is a faith-based non-profit where people with and without intellectual disabilities share life together.) As is the L'Arche DC custom, the evening's cooks led us in prayer. Cooks often lead prayer by passing a candle and sharing a favorite part of the day (or a favorite scent of fall), but on Thursday night, the cooks decided to go a more traditional route. They asked us to say the Lord's Prayer together.
It was a good idea in theory. In actuality, though, it turned into a bit of a mess. Most of us whispered the prayer, trying not to upset one of our Spanish-speaking members who gets upset whenever people speak English in unison. Furthermore, Leo (the L'Arche resident leading us) could not quite remember the sequence of phrases that make up the Lord's Prayer. As such, he inserted hums and trills where words ordinarily would be, recommencing the prayer wherever he remembered more words.
I was trying to watch Leo's lips and follow his lead, but that meant that I was hopelessly out of step with the rest of the table, as they were saying the prayer without pauses or hums. When an “Amen!” came from one end of the table, those at the other end of the table were still speaking. My husband Jonathan and I grinned at each other. Far from being unsettled by moments like this, we've grown accustomed to finding the humor and beauty within them.
The whole experience reminded me of my brother, Willie, as he is the leader of mealtime prayer at my parent's house. I've mentioned Willie's “trail blazing” prayers before, saying, “...when Willie leads dinnertime prayer, I am astonished at what he says every time: ‘Thank you God for heaven and for prayers and for my sister Caroline and Jonathan in Washington DC…' No one prompted Willie to do this. It’s simply how he expresses himself, a reflection of his heart. He may not always engage with me when I visit; he may not want to talk for long on the phone. But when he prays, I am clued in: He cares.”
The recent prayer time at L'Arche had me thinking about the insights that my brother's prayer has to offer. For me, Willie's recited prayer is replete with clues to his inner world. First, Willie is thankful “for heaven and for prayers.” I'm not sure what he thinks about heaven, but loving my brother has led me to believe in heaven as a place in which there are no barriers between people. It would not necessarily be a place without autism, but perhaps a place where the limits of autism on Willie's part (and ignorance on mine) would fall away, allowing us to connect and share more easily. But at the end of the day, all I know about my brother's heaven is that he is thankful for it. And that is so little to know, but in some ways, it is enough.
Next, Willie gives thanks for prayers. I wonder if he expresses this gratitude for his own prayers, or for the prayers of others, or both. Whichever it is, when Willie says, “Thank you God … for prayers,” he is glad to be able to pray. To say what's on his mind and heart. To share who he is and what he cares about with us. To lead us as a family.
Lastly, my brother prays for me first, every single time. He prays “for [my sister] Caroline” every day, without fail. Every time I hear it, I'm amazed by the importance he places on our relationship. If I ever doubt that it matters to him that I'm his sister, I just have to listen to his prayers to know that it does matter. In fact, our sibling relationship itself is akin to that L'Arche prayertime: an oft-muddled, messy, wholehearted attempt at sharing the sacred.
To what extent do we make ourselves? And how?
Quite a lot, according to Ian Hacking’s concept of looping. He argues that when we define “human kinds,” such as “teenage mother,” “hero,” “child abuser,” “hard worker,” etc.—as we must:
That may extend to calling people Aspies. At the margins, differentiating between a high-functioning Aspie and an NT who's, say, subtlety-challenged and single-focused, can be a tough call.
Also, when we recognize Aspies as a distinct type, among other things we're saying that someone may not be an out-and-out “Rain Man”—still a popular stereotype in the U.S.—but may still have a basis for doing some of the same things that others do for less appropriate reasons.
In other words, we're saying that among those who do things that upset others, the world is not divided between full-fledged autists and just plain jerks.
Hacking's ideas give us some interesting implications:
No doubt about it, labels aren't always perfect. But sometimes they’re useful. Now check out your medicine cabinet or supermarket—do you still think labels are bad? That strikes me as...loopy!
Sometimes coming up with column topics can be a bit of a challenge. But on the Monday before Thanksgiving, what better time is there to cuddle up with a warm and cozy homemade cliché? Here is my list of things for which I am most thankful:
I’m thankful for my son’s growing independence and his embracing of that independence. The more he gets, the more he wants, the more he thrives. He may never read a newspaper article with a high level of comprehension, but he can figure out a public transportation system like nobody’s business. I am so thankful (and relieved) that his independence is blossoming. It’s a thing of beauty to behold.
I’m thankful that my local school system realizes what they do best, and that special education isn’t one of those things. Thankfully, there have been no drawn-out battles regarding my son’s placement in a private school. (Basically, I’m thankful I’m not paying tuition!)
I’m thankful for my husband’s patience, understanding and support of my son. We haven’t always been as fortunate as to be tuition free, nor has my son always had the best work ethic. My husband has been an active parent to my son, and has helped him and me in countless ways, never once belaboring the fact that he is doing this for a step child.
I’m thankful for my son’s excellent team of teachers that have his best interests at heart. I understand and appreciate that it takes a certain kind of person to teach and support this population. It’s not an easy job, nor is it one that will make a person wealthy. For everyone out there that works within the Autism Galaxy, you deserve an extra helping of thanks yourself.
I’m thankful for my son’s compliance and desire to do well. I realize that I am fortunate in that I tell my 16-year-old what to do, and he basically does it. He respects my parental authority, even if he doesn’t always agree with me or understand the rationale behind my request.
I’m thankful for the opportunity to flex my parenting muscle. June Cleaver must have been bored out her skull! No wonder she had time to perfectly press her house dresses and polish those pumps! What’s great about having your parenting feet held to the fire on a regular basis is the reward of seeing your hard work paying off. (That and the calluses seem to deaden the pain a bit.)
I’m thankful I’m not cooking this year. The family and I are headed to the Big Apple for some shows, shopping, and chef-prepared meals. If my son doesn’t like his Thanksgiving dinner, I won’t have been the one slaving over the stove, only to receive a look of horror on his face when he sees his plate. I have Christmas to look forward to for that.
There are many many more things for which I am thankful, not the least of which is having a forum like Autism After 16 available to me as a writer and a parent. It’s so rewarding to be a part of this growing community, and I hope that our followers are learning as much as I am as we embark on this journey. Happy Thanksgiving to all!
I have been thinking a lot lately about things that I am thankful for. This is by no means a complete list of things I am grateful for, but that would be almost impossible to put entirely into words.
I am thankful for my time in college. While it has brought its fair share of difficulties, I have learned a lot and I have been able to interact with a lot of smart, courteous, and very friendly people. I feel that I will be able to put a lot of what I have learned to good use as I continue to grow and move out into the world. Besides, I am near to completing college, so any pain I feel now will not be prolonged.
I am thankful for all of the support I have gotten from my family and friends. I have a large family, and we tend to see each other a lot during the year. I enjoy the time I spend with them because we have a great deal of fun together and it gives me a chance to practice my social skills with people I can trust. I also love spending time with my best friend who I see quite a bit. We also have a lot of fun together and share many interests. The people in my life have helped me to learn how to be polite, how to become a diligent worker, and how to best use my unique talents. I have done my best to repay them in kind, but I know I can never completely do so. I will always cherish all of the kind things that they have done for me so that I may be able to spread my wings.
I am thankful that I have been able to get the mail almost every day for as long as I can remember. Getting the mail has become a vital part of my daily routine. If I do not get it, then I feel out of sorts and unorganized. When everything is orderly, I feel content and confident that I can find my way through anything. I like keeping my room tidy, having my college schedule organized so that I can get all of my schoolwork done in a timely manner, and collecting every single floating collectible item in a video game. (In many video games, certain items are very common and usually float in midair in many places around the virtual landscape waiting to be collected by the player’s character, typically by just running into them. I feel compelled to pick up all of them to make sure the level is completely cleared out of all such items, and besides, I usually get an extra life if I collect 100 of them!)
I have been able to read since I was very young, and I am thankful that I have a wide collection of books to read. I can be taken into another world far away from my real-life stresses, encounter memorable characters, and experience adventures which are more fantastic than most things I know in the real world.
I am thankful for living in an area that experiences all four seasons of the year. As I write this, all of the leaves on the trees have fallen to the ground. The trees themselves look slightly barren without their leaves, but I also think they have a quiet majesty to them. Fall will soon give way to winter, covering the ground in snow and giving the landscape a mix of emptiness and tranquility as the snowflakes glisten in the sun. When spring comes around next year and the air gets warmer, I will be able to take walks again and enjoy the fresh air, the growing plant life, and the return of birdsong. Summer will soon follow and I will have more free time to myself; I plan to take advantage of this by taking some of my favorite books outside to the front lawn and read them in the sunshine. All of the seasons have features that I enjoy, and I am glad to be in a place where I can take them all in.
Most of all, I am thankful for simply being alive. I feel very blessed that I have been able to live a good life so far. I have had hard times in my life, but I have learned a great deal and know that many people love and care about me. I strive to do well in everything that I do fully knowing that there is something worthwhile waiting for me when I am done.
Over the past three months we have had numerous questions regarding whether the staff from Cody’s day habilitation provider is following the service plan we feel Cody needs. We had requested notes be left for us regarding how his sessions went: what skills were worked on, how much assistance he required and how well he coped and behaved with learning these skills and during social interaction activities they did. At first everything was great. But then we started to notice that notes were not being provided. Bill often gets home before I do. Many times when he came home, he would find Cody downstairs with staff watching TV. When he would ask staff about how the day went he noticed that answers were becoming redundant and increasingly vague.
Bill began to call the provider to request copies of the daily notes that were turned into the office. He expressed his concerns about what was really being accomplished. Most of the time, his concerns were met with a seemingly caring reply. Then the responses began to grow cold and seemed to imply that perhaps we expected too much.
As I have discussed in previous columns, we wanted Cody to learn enough basic academic skills to be able to do things such as pay a cashier with an appropriate amount of money for an item he purchased. We wanted him to know the names of streets and to identify signs when he saw them. And we felt he needed to know proper grammar and responses when answering the telephone if we were not there. But we began to meet with resistance from staff and the agents at the provider regarding these requests. It seemed they felt these skills were seen as only academic and not pertaining to everyday life.
After numerous phone calls to different supervisory staff at the provider, we thought we had finally found common ground. We finally received the notes from the previous weeks that we had requested. Notes were being left by staff each day they were there, and we were pleased with what we read. Things went smoothly over the next two weeks. But then, it happened. Another issue reared its ugly head.
One day I was home sick. I knew Cody’s staff was to arrive at 10 a.m., so I had elected to remain downstairs while they did their work upstairs. About an hour later, my mother-in-law came down to tell me that staff had asked Cody what he wanted to do that day and he told them he wanted to go out to lunch. I was confused about why she was sent down to ask me. I had had a severe asthma attack the prior day so it wasn’t like I was contagious with anything. I told her that I felt they really needed to stay here and work on household chores and money skills since Cody and staff had been out to do community activities the day before. I thought all was fine until about an hour later Cody came downstairs and told me his staff had gone home. I went up to check and asked my mother-in-law if the staff had said anything to her. She told me that he said he had called his supervisor and since there was nothing left to do he left.
I made a call to the supervisor and asked what was going on and why the staff had not said anything to me about not having anything to do. I told her this was normally the day they did laundry and that I didn’t understand why that wasn’t attempted. She told me that the staff had indeed called her but told her that Cody was agitated, that the washer was broken, and that there wasn’t anything else to do since I had requested they not go out. He also said that I had asked that he tutor Cody in math skills and since that was not in the provider plan the supervisor had told him to go home, which she admitted.
I said, “I’m very confused then. How is Cody supposed to learn to pay for items at a store, or to pay a cashier for a restaurant tab if he is not taught simple math skills?” She told me that maybe they didn’t have the right plan then. How could they not have the right plan when it was all discussed in the meeting that had taken place with representatives from their organization, Cody’s case worker, an assessor from the state and Bill and I, all present?
Last week we received a letter in the mail from the director of the provider agency. They said they were sorry but they no longer felt that they could meet Cody’s needs to our satisfaction and that in 30 days they would cease to provide services for Cody. What was so difficult about what we were asking?
So needless to say, we are on the hunt for the right provider once again.
One of my biggest fears as Willie's sister is that he'll seriously hurt himself, or someone else. I worry every time he pounds his head into a wall. I fear for his safety, and my parents do, too. When he's upset and angry, they remind him, “Willie, your head is precious.” Sometimes he listens, and sometimes he doesn't, but I'm always touched to hear them say it. Though he's hurt them physically and emotionally, they still love and protect him.
Their love has been a model for me. When Willie first started acting out aggressively, I let myself be driven by my own fear and anger. Whenever he would lash out, my temper would flare, too. Even though I knew it would only make bad situations worse, I kept wanting to strike back.
Gradually, however, I came to see that Willie was hurting himself and others because he was in torment. He didn't need my punishment; he needed my compassion. The struggle for calm behavior has spanned years for my brother, and it's not over yet.
In high school and college, I rarely invited friends over to the house. I was afraid to let others enter into the chaos. Eventually, after much pleading, I let my best friends sleep over. And when Willie had a meltdown that night, my friends were gracious. They stayed close to me, offering comfort, and I felt both ashamed and relieved.
When I introduced my husband Jonathan to my family, I knew that it was only a matter of time before he, too, would see the scary side of Willie. I warned him about what to expect, but secretly, I hoped against hope that my husband and my brother would never come to blows.
In last week's column, I hinted that they had, writing: “...I just hoped my brother wouldn't get upset and try to tackle my husband-to-be [the first time they met]. That unsettling scene did take place eventually, but not that night.”
During a visit home last year, my husband and I spent time with my brother while my parents went out briefly. During that time, Willie began to aggress, tapping out angry noises, stomping his feet. I tried to remain peaceful, knowing that my own calm energy was the best thing I could offer him. On that day, however, it didn't seem to help.
With my prompting, Willie rolled himself into the rug. (Rolling into a rug is our family's version of Temple Grandin's squeeze machine. It helps Willie to experience steady, calming pressure.) But just when I thought he was under control, he lashed out again. He rolled out of the rug, too quickly for me to stop him. And then he charged at me.
As the situation had escalated, Jonathan stood back, allowing me to help Willie. He had watched our interactions, listened as I talked to Willie in a soothing voice. But when Willie charged, Jonathan was ready. In one smooth motion, he stepped in front of my angry brother and wrapped him in a bear hug. Though Willie is strong and tall for his age, Jonathan is stronger. He brought Willie to the floor in seconds, helping him roll back into the rug. Jonathan's movements were both strong and deliberate. Even as he was protecting me, he was gentle with Willie.
I stood nearby, trembling. If Jonathan hadn't been there, I knew I would have been hurt.
When my parents heard what had happened, they were saddened and upset. Willie was remorseful, too. Whenever he has a major episode, he's always altered afterward, always contrite. It's like seeing Jekyll repent for Hyde's wrongdoing.
“I'm sorry, Caroline,” he wailed. “I'm sorry, Jonathan.”
“I know, Willie. I know.” I reached out, slowly, to hug him. I saw Jonathan nod, and I knew he'd accepted the apology. And he'd treated Willie with dignity even as he was bearing him to the ground, and for that, I was speechless with gratitude.
Speechless I stood, my fears realized, holding my brother close.
It is 3:00 PM on Thanksgiving and dinner isn’t for another couple of hours. Everyone is watching the football game, but sports aren’t your thing. Or it is Friday the morning after Thanksgiving and your sisters are headed to the mall with glee, but you rather be beamed to Mars than go shopping. For some of us on the spectrum, holidays are trials of survival.
Having something to focus on can sometimes keep things calm during those vexing stretches of downtime. So in this month’s column, I suggest three books that promise a dose of entertainment and intellectual stimulation when you need it most.
For those of you who like a good story, Herb Heiman’s Running on Dreams is a refreshing tale that can be tackled in an afternoon or so. Justin, a teenager on the autism spectrum, is “assigned” to Brad, a peer buddy at school, whose mind is anywhere but on disability issues.
Both boys face pressures that might seem diametrically opposed. What does a popular jock with a girlfriend have in common with a special education student? The author does an excellent job weaving these two lives together. Through the events of the story, which the author tells in an interesting alternating format, what emerges is the commonality these young men face in growing up.
What I liked so much about this story is that I could see myself in Justin. Those of us on the spectrum know that we are different and also the same as everyone else. What Brad and Justin learn about friendship is universal and touching. Don’t pass up this book just because you think it’s for high-schoolers. Anyone at any age will find this story endearing.
If your reading tastes veer more toward straightforward factual material, grab a copy of Temple Grandin’s The Way I See It. A prominent animal scientist and autistic adult, Grandin may be more famous for some of her other books. But this one provides candid insight into autism—across the spectrum—that everyone can appreciate.
The book is wide in scope but not terse or dense. Grandin delivers the kind of straight-forward advice so many of us long for. You can’t beat honest advice like, “…being good at something helps compensate for being weird.” Yet such frank insights do not at all detract from her comprehensive coverage of topics ranging from education to sensory issues and from the latest brain research to eating techniques.
This book serves a double-purpose: As I read through the chapters and Grandin’s insights unfolded, I gained new models for explaining how I operate to others—perfect timing for the family-saturated holiday season.
Outside the Autism Universe
I am also going to recommend Icy Sparks by Gwyn Hyman Rubio. The heroine of this book is not autistic, but she has Tourette Syndrome. Growing up in the 1950s in a poor Appalachian community, she is taunted and ostracized and even institutionalized at one point. What Icy really lacks is self-understanding. She doesn’t know why she has tics. Being different is a burden—but how much more so is the burden when you don’t know your diagnosis? For some of us on the autism spectrum who grew up not knowing our challenges weren’t our fault, Icy’s story definitely resonates.
Icy discovers her strengths and talents anyway, and when at last understanding does arrive, she turns her pain around to make a difference in the world as a children’s therapist. This is certainly inspiring. But beyond being “just” a tear-jerker, Icy’s story underscores that diversity is a regular part of life, and it is really our fears that are most disabling. We adults on the autism spectrum are not alone, and many other adults, on the spectrum and with other conditions and issues, can be strengthened by our common efforts to take a place in society with our dignity intact.
I hope this short list of books keeps your brain occupied during one of the most socially challenging and sensory challenging holidays. Thanksgiving is, ultimately, a holiday of gratitude. I think these three books speak to this theme in different ways. Whether the feelings of gratitude arise from gaining understanding about our differences, from triumphing over our challenges in little and big ways, or from bridging understandings between those of us with diversities and those of us without, the autism community and individuals on the autism spectrum have much to be thankful for.
It was 8:50 a.m. I'd just dropped off Emily at the station and gotten back to my office. An email had just landed in my Inbox, asking me to appear on a radio show—that very same afternoon. Apparently someone had cancelled at the last minute.
This was the first time I'd heard from the producers directly. Over a month before, they'd sent out a call for possible guests and I'd responded. After a short while had passed, I'd figured they were going with someone else. Now they were calling me back.
Morning has never been my best time of day to respond to people. And as an Aspie, I've never enjoyed improvising on short notice. Thing is, if I didn't respond quickly they'd call on someone else.
So, at 8:52 I replied, saying yes and among other things asking what number I should call.
The guest booker's response: “The producer will call you at a number that's good for you.”
Tug o' War's never been one of my favorite games. But you wouldn't know that by how often I've played it. (Once even with a rope!)
I like making calls more than receiving them so I can ready myself and be “in the moment.” Also, I tend to pace around, and certain spots in my office get much better reception than others. Sitting around waiting for a call, especially one that I need to take rather than let go to voicemail, is not my cup of tea.
One thing I've come to realize over the years: Sometimes complying with my wishes isn't exactly other folks' cups of tea either.
More specifically, radio shows, like other group activities, tend to have their own ways of doing things. That tends to include their placing the call to the guest. Given how time is money and that the last thing they want is dead air, they may not want to risk a guest forgetting to call in at exactly the time they need him to.
Worse still, they themselves may not know in advance at exactly what time they want the guest on. Maybe some breaking news will occur, or the interview before mine could run long or short.
So flexibility is the key. And also, people tend to like it when you give a reason for your request especially if it's one they may not completely like.
Thus I responded: “Would it be possible for me to call in? That way I can make sure to stand in a spot that gets the best reception.”
The guest booker replied with the studio number, and also said: “That should work (though he's pretty particular about calling). Could we get a back-up, just in case?"
OK. They're willing to work with me.
On the other hand, note “should work”—as distinct from “Will work” or “No problem.” Also note the remark in parentheses. In other words, yes they'll give me the number and let me call in, but they'd seriously prefer to do the initial calling if at all possible.
So yes, I can still get the interview, as long as I give them a back-up number they can call just in case I forget. And unless they're satisfied that I really needed that accommodation, I may never hear from them again. Which may not be so good, because this is a nationally-known show.
We need good relationships, not one-shot deals. So I decided that this time, helping them out a bit would be best. I responded: “My humble apologies—if he's particular about calling he can call me at ... If I don't hear from him by five minutes after show time I'll call the number you gave.”
The results? The guest booker thanked me effusively, and the producer made sure to call me on time. We had a great time with the interview, and both hosts have been glad to keep in touch with me afterwards.
Bottom line: Accommodations go both ways—if you want a good life, that is.
Cameron is a source of unending surprises. I am constantly surprised by his ability to answer the most open ended questions imaginable with a one word answer. To say that making conversation with Cameron is a challenge is like saying … well, it’s like saying good metaphors come easy to me. But you know what? Cameron can hold his own in a conversation! I’ve seen him do it. He just does it for other people, and not his dear old mom. Huh. Go figure. And here I thought I was very pleasant to talk to. Cameron is participating in a leadership program sponsored by Special Olympics and the Gallup organization. The purpose of this program is for students (or athletes, as they’re referred to by Special Olympics) to learn their strengths, and capitalize on those strengths by putting them to good use. Each student/athlete is paired with a Gallup professional as a mentor, and over the course of seven monthly meetings, they work together to identify and develop the athlete’s three core strengths. The culmination is a presentation in front of a sizable audience where the athlete explains what their strengths are and how those strengths define who they are. It’s such a great opportunity. I attended the first meeting with Cameron this week, so that I could make sure he knew the route next month when he goes on his own. (Ahem … I got us off at the wrong stop. Cameron would never have made that mistake, but I digress.) The first part of the meeting was eating pizza, so Cameron had that one down, no problem. The second part of the meeting was introducing yourself to the group by including something about what you like. I sat on the other side of the room dreading Cameron’s turn. I knew he would say something like, “I’m Cameron” and wait for further prompting. I was tempted to text a script to him, but his mentor was right next to him, so I knew I’d get busted. When it was Cameron’s turn, I couldn’t believe my ears. A whole entire PARAGRAPH came flowing from his mouth. He stated his first, middle and last name, and explained that through his school he had an internship at a pizza restaurant. He went on to explain his lifelong dream of owning a pizza restaurant and that he hoped by participating in this program he would be better prepared to be a business owner. It took every ounce of restraint I had to not jump up and do big “Woot! Woot!” in the middle of the conference room. Of course, to everyone else in the room, this introduction of Cameron’s was no big feat, because everyone else was doing the same type of introduction. But they don’t know Cameron like I do. This was not the first time I was caught off guard by Cameron’s communication skills. The Smithsonian summer camp he attended required an interview as part of the application process. Again, I was a nervous wreck over the event. One of the people interviewing Cameron had a service dog, and I was sure this would distract him, and he might even make an inappropriate comment. Surprise Number One that day was that he didn’t even seem to notice the dog in the room. Surprise Number Two was when he started answering questions about himself. Again, he spoke in paragraphs, and not one-word answers. At one point, he looked at me and asked, “Did I say something wrong?” I guess I had this look of shock on my face, and he didn’t quite know what to make of it. I’m left wondering what else lies beneath the surface of my darling son. I’ve said “they don’t know Cameron like I do,” but do I know Cameron like they do? I think this becomes the challenge most parents face. How do our kids act when we’re not around? Do we give them enough opportunity for being as independent as they can be? Are we subconsciously prompting for behaviors that don’t happen unless we’re around to unknowingly prompt for them? I’m happy to say that so far, all my surprises with regard to Cameron have been pleasant. I hope they stay that way.
Having to think about certain “what ifs” of the future are quite difficult for me when it comes to pondering, where would Cody be if—God forbid—something happened to my husband and me and we were not here to care for him. Nevertheless, it is an issue that we must face for the sake of Cody’s overall wellbeing if it were to happen.
We also have to face the possibility of finding alternative day care for Cody. When Bill and I are working and Cody’s day hab staff is not working with him, Cody is home with his grandmother who lives with us. She is 84 years old and in frail health. Her memory is not always up to par and she needs lots of reminders from us just to make sure the Cody’s basic needs, such as breakfast and lunch, are being taken care of. We are managing with it all now, but very soon the probability that Cody will need alternative day care will be a reality.
In other columns, I have talked about our experience with an adult day care provider and how it did not work so well at the time. Perhaps looking at others in our area will become a necessity if we have no other alternative. Hopefully there are ones out there which are more suitable for our son. That still remains to be seen. We have already been brainstorming to arrive at a viable solution.
With respect to what would be the outcome if the unthinkable should happen and Bill and I were no longer here to love and care for Cody, this too has the both of us racking our brains to create a plan to make sure Cody would have a stable home with people he knows that will love and care for him in all the ways he needs. I do have family in the near vicinity, however Bill does not. Bill’s family is scattered throughout the United States. But the problem lies not so much in the locations, but in the situations with their families. They all have family members who are already in need of their undivided attention. How would they cope with adding another adult to the mix, especially one with autism?
I was asked about my thoughts on a group home for Cody in the future. Let me say this: I spent three years working in one. In spite of the fact that the majority of the staff there were very compassionate and mostly wise in their care and decision-making when it came to the care of the residents, a group home is not the answer I wish to see for Cody. In group homes, especially those that are funded by the state, staff is taught to keep boundaries. Everyone needs certain boundaries, this is true. But for residents to never hear the words, “I love you.” from those who are supposed to care for their every need, is to me, a cold existence. To think that my son would only receive a side hug in lieu of a warm embrace is at the very least a heart-wrenching thought. And if he were to initiate a hug then he would be directed away from what he has always known and felt, and has been taught by Bill and me, to be a perfectly appropriate show of affection. And to think of him living with complete strangers, whose diagnoses may include psychiatric disorders, more than troubles me in a profound way. But the unfortunate reality is that people like Cody do end up in group homes like this where they would never be able to thrive, and where their whole being could potentially be at grave risk for physical and or psychological harm. Right now, I can’t begin to bring myself to even consider this alternative as a possible living arrangement for my son.
While Bill and I have never meant to become hermits or anti-social people ourselves, it is a fact that we do not have friends with whom we are close enough to ask or even consider as future adoptive families for Cody. We have little time to go out and socialize in the traditional ways other people do. The possibility of us making friends in the future, who we could feel comfortable enough to consider asking them about such a monumental undertaking, is slim to none.
This all leads to the consideration of assisted living. But would that even work for Cody at this stage of the game, when he still has so much to learn? I can only hope and pray that if this is what lies ahead for Cody, it will be much further down the path and Cody will have learned all he needs to know to make this kind of living arrangement a success.
But truthfully, I pray and live every day in faith that God will provide a much better solution than what Bill and I can conceive of in the way of supported living for Cody, should it become a reality that we were no longer here to provide for him ourselves, and he were unable to do it on his own.
We're gathered around the table together for the first time, my family and my boyfriend. Jonathan is going to be my fiance in a matter of weeks, and we'll be married in a few months, but for now, he's just meeting my family.
I've chosen the restaurant strategically. My younger brother Willie has gluten, wheat and lactose intolerances, noise-aversion and other sensitivities, and a history of violent behavioral outbursts. In other words, the restaurant cannot be too fancy or too loud. Willie needs to be able to wear his noise-canceling headphones and order something familiar. The ideal restaurant is a casual family place, and that's where we are tonight. The lights are low, and since we're practically the only patrons, the restaurant is quiet. Willie will order a burger without the bun, I know, and he'll eat his fries first, like he always does. Willie always eats whatever food he likes best first. I always save the best for last.
Bringing a significant other to meet the family is always a bit of an intimidating process. In my case, however, I just hoped my brother wouldn't get upset and try to tackle my husband-to-be.
That unsettling scene did take place eventually, but not that night. What happened was as follows: I introduced my husband to my family, and then I watched as Willie's anxiety became our central focus. He didn't have a total meltdown, but it was clear that the day of travel had tested his patience to the max. Whenever my parents would ask Jonathan a question, he'd barely have time to answer before Willie would interrupt.
Willie kept asking for validation, for the same repeated answers to the same repeated questions. I could tell that he was trying to keep himself in control. His anxiety was contagious. I felt my stomach doing flip-flops, and I held my boyfriend's hand tightly. I wanted Willie to feel calm, and I wanted a semi-normal supper. Neither was in the cards that night.
As we walked away from the restaurant, I felt frustrated. I felt as though my parents hadn't had a good chance to get to know my husband, and vice versa. Willie's drama had taken center stage.
What I didn't realize then was that Willie had made a connection. From that time forward, my brother started including Jonathan in his prayers. Every night, he'd say, “Thank you God for heaven and for prayers and for my sister Caroline, and for Jonathan in Washington DC...” The first time I heard him say it, I felt a shiver run through me. In his own way, I knew, Willie was welcoming Jonathan into the family.
While I would have scripted our first supper differently, it seems that it was a step in the right direction regardless. Willie's prayers showed me that, as did Jonathan's willingness to include my brother in our future plans.
Soon after we were engaged, we discussed the fact that I've agreed to care for my brother in the event that my parents cannot. I spoke at length about what this might mean for us as a couple. I tried to be fair to Jonathan. I invited him into my commitment to my family, and I tried not to be afraid.
In the darkest parts of my mind, I feared that, somehow, my brother's high level of need would demand too much, that it would be a “deal-breaker”. Never mind that Jonathan and I had met while caring for people with intellectual disabilities together. Never mind that his patience amazed me every day. Never mind that we were, in many ways, an ideal pair to welcome someone like Willie into our (hypothetical) future life. Though all of these things were true, I was still afraid when I asked Jonathan, “Can we agree to care for Willie if he needs us?”
Jonathan listened calmly, and then he said, “Of course.” In that moment, I could see that there was never a doubt in his mind. His answer was always going to be yes. Yes to me, and yes to Willie. Yes to leaving normal.
And with that realization, I let the tears fall.
“Oh #$!@&! Not again!”
My laptop had seized up. Burdened with too many things running at once and after going slower than molasses, it couldn't muster up any more computing power and had crashed, forcing me to unplug it and then pull out the battery. Basically I had to abruptly shut it down, losing everything that wasn't already saved.
I've had a bad habit: Leaving lots of tabs open. How many tabs open at a time, you may ask? My laptop was a regular Heinz—57 varieties! (I wish I were exaggerating.) Plus a few documents, maybe a Notepad or three, all for days on end.
Not to put too fine a point on it, I've been indecisive, stubborn and lazy. What to do?
I've made an early New Year's Resolution: Each time now before I go to bed at night or leave the house, I close all programs and actually shut the computer down. That forces me to make a quick decision about each thing I had open. Besides both giving the laptop a much more viable workload—which helps ensure it keeps working and makes it run faster, thus saving time—and keeping the files safe, it's a great time management tool in itself because I dispose of each thing once and move on. Plus, it saves power and protects the computer from sudden electrical storms.
We're creatures of habit. By “we” I mean humans in general, not just Aspies. As the saying goes, motivation may get you started but habits keep you going. (Where did I hear that, you may ask? In Weight Watchers, to which I've belonged for years--that's a story for another day.)
One thing people have often said about me (sometimes even to me): I don't know when to quit. The neat thing about it is, once I get a good habit started up it's likely to stick.
This one is simple. Before going to sleep or leaving the house:
That's a good model for behavior change in general: Keep it specific, keep it simple—and keep it going.
Besides the more visible benefits, I'm happier—because I know I can do more with myself. I've seized the power to succeed despite my worst enemy.
I know that in an important sense I can do whatever I want. I'm happier than if I'd found $1,000 on the sidewalk. Money can be taken away (or become worthless with inflation). And once it's spent it's gone. Not to mention finding money is nothing to be proud of. But if I can do something new, that can stay with me for a lifetime. And I can use that power to move on to greater successes.
During Cody’s senior year of high school we had been advised by Cody’s teachers that he could have stayed in public school until the age of 21. But given the curriculum they had employed with him on a steady basis for the course of his four year enrollment, and the fact that it just was not producing the kind of results we had wanted to see, we felt that a change was needed.
Cody had hit a plateau and stayed there, particularly over the last two years. The only benefit that we could see to leaving him public school was for social interaction. Sadly, I felt that socialization within the public school was much more structured and controlled for students in special ed programs whereas the academic side of the program for them was not. So, we decided that Cody needed to go ahead and graduate out of the system.
It was not until we had met with the first of Cody’s caseworkers through the Department of Social Services that a transitional plan was discussed and we were given a list of programs from which to choose. There was vocational rehabilitation, day habilitation, a technical center specifically designed for those with cognitive challenges and daycare services for adults with disabilities. We had explored each of these, ruling out some completely due to the fact that we felt the programs did not offer anything that would address what we felt were Cody’s most immediate needs. We tried some that weren’t right for Cody. And then there were those that we felt could be of great benefit to Cody by addressing all of his needs and meeting all of our expectations. But there was the issue of the waiting list for funding. We ultimately decided day hab services would best serve Cody’s needs and finally, when the waiting came to an end and services for Cody began, a solid plan of what staff would assist him with could be laid out on the table.
One of the most important things that we have incorporated into Cody’s daily agenda is the continuation of working on academic skills. I have often been questioned about my decision to do that. But I believe that my reasons for the inclusion of academics in his program have solid merit. For instance, Cody has always had difficulties in mathematics. I’m not speaking about trigonometry or calculus here. I’m talking about math skills we all use every day. Addition and subtraction, multiplication and division are skills we use throughout every day of our lives. We spend and make money. We keep track of our schedules. We measure cooking ingredients and laundry detergent. These are all important things Cody needs to learn to help him become more independent.
Reading is something we must do every day. We read directions and street signs. There are instructions we must follow for certain things, whether it is for following a recipe or filling out a form at the doctor’s office. Reading for Cody will give him information to help him throughout the day just like it does for all the rest of us.
Proper grammar and sentence structure is something all us of should know to the best of our abilities. If Cody uses proper grammar and appropriate sentence structure when communicating with others then he will be less likely to be judged by someone who may not realize he has autism. People are more likely to be more focused on what we say if we employ proper grammar and sentence structure. However, if we do not then people may focus much more on our grammatical errors than an important point we are attempting to make, or a message we are trying to relay.
As his mother, it is important to me that Cody learn all the life skills he needs to know. But continuing to learn academic skills will enhance the lessons of those life skills so much more.
After completing a year and a half of college, I have noticed that I have become increasingly tired of doing schoolwork. I was able to handle the pressures of balancing a busy personal life and fulfilling my college assignments as I began my studies. However, I feel that this same balancing act is harder to maintain now, even though there have been only a few changes in my life.
During my first semester of college, I was trying to get my bearings. I struggled a bit with readjusting to a regiment of schoolwork after a little over a year away from academics. I had to learn how to do things in each of my classes almost every day and maintain the proper participation level to get a good grade. Because I was new to attending classes online, I also had to learn how to hold virtual discussions, transfer documents from a word processing program onto the college website’s occasionally uncooperative interface, deal with the realities of dropped Internet connections, and try to cope with my “evil-hearted” printer that would not print out what I wanted neatly and completely. I have been able to handle these technology woes better over time, but there are still several words I would like to use to describe them but dare not on a family website. Despite these concerns, I actually enjoyed the challenge of trying to take all of this in at once. I was learning skills which I felt surely would become very useful to me in my later life, and I was well aware of the old saying, “No pain, no gain.”
Besides, I still had plenty of time to myself when I was not doing my college work, and there were many things in my life which supplied relief for when things got too stressful. I had a continuous schedule of extracurricular activities such as piano lessons and Special Olympics sports practices, which I found much more relaxing than my regular work. Breakfast, lunch, and dinner were also moments of respite for me, as I could simply eat and concentrate solely on whatever was playing on television. Of course, I learned in one of my health classes that this very pastime was a bad habit in itself, but quite frankly, I have to admit that not having to think sounds much more relaxing to me these days. In a roundabout way, even sleep proved to be a luxury, as it served as a rich prize after a long night of attempting to hammer out every last detail of a vital essay.
In the middle of my second semester my attitude toward college began to change. I became increasingly frustrated by some of the assignments my professors gave me. Sometimes the assignments themselves were hard to work out, while other times the professors’ instructions were simply unclear and would not become much more understandable after I e-mailed my teachers asking what they precisely wanted. In addition, I felt that my schedule was becoming more restrictive. I had less free time to myself as my assignments began to require more of my time. I have even had to cancel some of my extracurricular activities some days because I had to put in extra work for an assignment, an outcome I have never been quite happy about.
However, I recognize that my perspective on this is shaped by the fact that some of these complications have resulted from my own behavior. I do not get going on my assignments early in the morning as my mother suggests I should because I prefer a slower transition into starting my school day. I like to take my first few waking moments watching morning news shows, eating a good breakfast, and taking a hot shower before I start my college work. I sometimes enjoy reading a portion of a good book in the morning as well, but this tends to make me lose track of time. I have also adopted a habit of looking at websites other than the college website, even though I am supposed to be doing my work. This also makes me lose track of the time, prompting my mother to remind me to refocus my attention on my work. I promised her at the end of my second semester that I would not slip into this habit again, and yet I still find myself doing this. I believe that I may have taken on this habit because I feel pressured by my increasingly tough regimen of work, and I feel like I need some sort of release to keep relaxed during intense work sessions.
Through analyzing my personal feelings and the effects they have had on how I have conducted my college work, I now realize I can do better and will work on improving the areas I am struggling with. I need to streamline my morning routine so that I can get to work sooner. I will also focus more on my work and not on my favorite websites which only serve as distractions, and I continue to let my professors know of any trouble I may have with the work they assign.
I know I need to improve my attitude toward college because, while it may be frustrating at times, I feel it is still necessary for me to be successful in college if I hope to reap the rewards of a successful career and a life well-lived. I also take comfort in knowing I only have a few semesters left before I will be done with this phase of my life. In my view, it is wise to make the best of what I have now so that I can have even better opportunities for tomorrow.
Last year, my brother Willie spent a day with me at my studio apartment in Washington, DC. I’d offered to stay with him while my parents went to a wedding in Northern Virginia. Even though I'd been looking forward to our time, I felt apprehensive as well. I knew that the day might be difficult for him, and I was right.
When my family arrived, I could tell that Willie was tense. He seemed unsettled by the travel and the changes to his routine. So at first I tried, somewhat frantically, to entertain him. I brought out things he enjoys—books and word-searches—but my motivation was fear-based. I wanted to avoid confrontation. The thought of Willie having a meltdown in our tiny apartment scared me, even though my husband was present to help us.
Yet as the afternoon continued, I realized that fearfully entertaining him wasn't the way to go. Willie picks up on other people's energy; I’ve seen his behavior deteriorate quickly when he senses fear and anger. Likewise, I’ve seen him calm down when the person he’s with consciously tries to exude peacefulness. This being the case, I knew I needed to change my mindset.
With that in mind, I suggested that we head upstairs to the building's roof-deck. Though the day was overcast, I thought that sitting under the big sky would help Willie to stay calm. What I didn’t realize was that it would help me, too.
We sat on wrought-iron patio chairs and read our respective books. The skies continued to darken. As the storm neared, Willie started doing his deep-breathing exercises. In that moment, I realized that, though our struggles manifest themselves differently, both of us struggle with anxiety. Willie works to remain calm and avoid blowups; I work to remain peaceful and avoid a judgmental, controlling mindset.
These days, I have more and more moments of realization in which I see that my brother and I are two of a kind. He is a perfectionist with obsessive tendencies, just like me. I re-write my to-do list if it looks messy; Willie erases his math-problem mistakes so thoroughly that he wears out the pages of his homework. If he so much as doesn’t like the look of a number, he’ll erase and start again.
As we sat together on the roof-deck that day, I felt immense compassion for both of us. We were both trying so hard to be what one another needed, and somehow, the effort itself was a beautiful thing to witness. As I observed the scene in my mind, I thought: We two neurotic human beings are doing our best. We are trying, and that makes this day a success.
The rain eventually forced us downstairs, but we were able to sit together in the apartment, with minimal anxiety, until my parents arrived. And after we'd said our goodbyes, I wrote this verse:
We're sitting on the roof of my apartment
building when the light leaves us.
There are dark clouds above, darker
ones on the horizon. An ominous sky.
The wind picks up, and we set down
our respective reading, letting the pages flap.
Still we stay, staring out. When I feel
the first drops of rain on my arm,
we gather ourselves to go. There's
no hurry. Storms from without are nothing;
skies within, at last, are calm.
Sometimes I wonder whether or not my future life will involve caring for my brother on a daily basis. (My husband and I have agreed to be caregivers in the event that it becomes necessary.) If I do become “my brother's keeper," it will mean major changes for us both. But remembering that afternoon we spent together on the roof-deck gives me courage. It reminds me that, though both of us struggle with perfectionism, we don’t have to be perfect for each other. We just have to be human, to be ourselves. We just have to choose to walk through life together.
We've scored a major intelligence coup. Not in Iraq or Pakistan or even Libya, but here at home.
Spies recently intercepted a list of basic concepts to teach NT children. If this knowledge is half as effective as it's said to be, it really helps explain why NTs tend to get along much better in life in general.
A redacted summary from Wikileaks gives us these bombshells:
For example, if you say “You messed this up,” you're not only saying it got messed up, but also focusing on the other person's mistakes. Only do this if you want to attack the other person's work and possibly even them personally. On the other hand, if you say “This got messed up” it means the same thing—but you're also saying that you're not necessarily blaming the other person. Or at least you're being polite about it and trying not to hurt their feelings.
For example, if someone asks “Can you help me with this report?” and you don't know enough about it or don't have time, just say something like: “I'd really love to be able to do that, and I'm sure it's important work. Good luck with it!” Any nice person will understand.
Any secret agent knows that if you want to infiltrate a group, adopt as many of their behaviors as possible. So if you're not actually an NT, you don't have to agree with them ... but the more you can fit in, the more you can learn about their strange society (and maybe send on to Wikileaks!). And they themselves may even reward you!
They don’t call it a “spectrum” for nothing, do they? When it comes to discussing Cameron’s disabilities, I still find myself tap dancing a bit, especially when discussing it with someone within the Autism “community”. When speaking with parents of Cameron’s peers at school, there’s always that point in the conversation where I start feeling out their child’s capabilities as compared to Cameron’s. It’s not intended as a competitive comparison, but more of a need to find a baseline for where Cameron is compared to the herd. It’s inevitably a delicate conversation, because I feel I’m either going to be crushed by the realization that Cameron is far behind the curve, or I’m going to crush someone else when I highlight Cameron’s high degree of independence. When I read columns written by my colleagues at Autism After 16, I identify with bits and pieces, but usually am left comparing where Cameron is to the writer’s subject matter. Cameron is usually so far off in one direction or another from any other ASD person that I’ve started referring to it as the Autism “Galaxy” as opposed to “Community.” I often feel Cameron is on a planet of his own in this galaxy. He’s like Pluto. Adorable, just like Mickey Mouse’s dog, but sometimes a planet, sometimes not, just kinda hanging out revolving around the sun, but at a much slower pace than those of us here on Earth. Coming from a planet of one, it’s impossible to find someone that speaks your language. But he’s adapting, as best he can. I’m no space explorer, but I suspect there are hundreds of planets in this Autism Galaxy, all very different from each other. So what is there to learn from the vast differences I see among the planets? It’s much more than, “Man, I’m glad I don’t have to go there!” or “Wouldn’t it be nice if we were there instead?” Perhaps interplanetary travel will facilitate relocation to different planets. Have I run this metaphor into the ground yet? Or am I digging myself into a black hole? My point is this: The more we talk to each other, the more we can learn. But in order to learn more, I realize I need to push myself beyond that social awkwardness and have the conversation without fear of offense. I don’t know that I would’ve realized that, had I not started this writing gig with AA16. In my enthusiasm for this website, I find conversations gravitating towards the issues facing the Autism Galaxy more and more. I feel a certain sense of relief coming from both sides of the conversation as the discussion takes place. Whereas before, it was a little like discussing religion or politics, now it’s more of an empowering feeling. Someone in the conversation has inevitably been there and done that, and the other participant in the conversation always welcomes details about that experience. But if I hold back, and fear I’ll appear less than adequate as a parent, or as a pushy know it all, I might as well be on a planet by myself. And what fun would that be?
Victory is ours! I've just received a text message from my mom, alerting me to the fact that she and my dad are signing their will and Willie's special needs trust papers this morning. ...
It is that time of year again, when families get together for holidays and people start Christmas shopping.
My daughter wrote a monologue for an acting class about growing up with a sibling on the spectrum.
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.
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