While the events surrounding last week’s column have been fraught with emotion, the outpouring of support from readers has been overwhelming. The assault Cameron suffered at the workplace bruised not only his cheeks, but it bruised my soul as well. I am very thankful that the bruises on Cameron’s cheeks have healed, but my soul is still aching. What has made that ache even stronger is the number of readers that responded with similar stories of their own in emails, article comments, and the AA16 Facebook page. Here are a few quotes from readers:
“My son too has been the victim of situations like this, and at the hands of nondisabled persons, care givers, peers. It’s horrible and one that has changed my life. I used to be far more happy about his growth and developments and opportunities; I have changed now. I am apprehensive about letting him out of my sight.”
“I am very sorry you and your son experienced such a horrific ordeal. I experienced something similar and learned the importance of the people with our children truly understanding their disability. My son is going to go to a part time job—it is not disability based; although he will have a job coach; and I am fearful. Thank you for writing this important article.”
“I don't have a child with autism, but I do have a son with a rare genetic condition/nonverbal and I had a somewhat similar experience where a school staff person dragged him across a playground very roughly and threw him in his wheelchair and was reported by other staff. There was a police investigation but the union protected the staff person from having to make a statement to the police. We had to go through all kinds of interviews with police and CAS. The police recommended that the staff person not be in a class with our son again but that we not press charges. The staff person never returned to the school. Last year my son changed schools to go to a mainstream school and we found out months later that the staff person involved was working at this school. So there were no checks in the system to make sure this person was not around my son. I was told that the staff person had received consequences and counseling and that everyone deserves another chance.”
“Our son, to make a long story short, lived in a home that I set up with an agency through the state and he too was severely beaten. Unfortunately my son does not function as well as your son, and his response was to run away, multiple times. I just never knew because it was only from the neck down and covered by his clothes. When I found out I immediately brought him home. I too trusted our DSHS and it failed us.”
It breaks my heart that so many people have had firsthand experience with needless violence against this most vulnerable population. One of my talents has always been that I’m a good sleeper. This soul bruising has robbed me of that talent. I am happy to report however, that a police detective came to our house to interview Cameron the day after my column was posted. The investigation is still ongoing, and I’m hopeful that I will eventually feel that justice has been served. I will continue to report on the progress of the case, and I feel empowered by all the support readers have offered through comments, emails, and sharing of my column. It’s important to stand up to violence, and not hide behind the “boys will be boys” mentality.
Two weeks ago, I had barely gotten out of bed when the phone rang. It was Bill. He had worked an overnight shift and just before his night was about to end he began to feel cold and clammy. He began having what he thought was a bad case of indigestion. But then his pain began to radiate to the left side of his chest and neck and his arm began to tingle. He told me, “I think maybe I should go to the emergency room.”
I quickly dressed and asked my mother-in-law if she would wake Cody and make sure he was fed and dressed before his Occupational Tech, Zach, arrived at 9:00 a.m. I did not dare say anything to Cody. And then I got to the car and made my way to the hospital.
When I found Bill’s room he was sitting on the gurney with his head resting on his elbow which was propped on the rail. The look on his face was one of boredom and dismay. Apparently when his initial blood work came back it was negative for any signs of a serious problem. But the doctor urged him to stay and allow them to run more tests. I pleaded with him to do so, and he did, but under protest.
The doctor wanted to see what the results of a stress test would reveal, but before one could be performed more blood work was done and the enzyme troponin was indeed present in significant proportions. Bill had, had a heart attack. Bill was then admitted to the cardiac unit, a cardiologist was brought in, and the doctors began discussing what the next course of action should be.
During this time I was traveling back and forth from the hospital to make sure Bill had what he needed, and that Cody was having his needs met at home. I was in somewhat of a quandary as to what I should tell Cody. He is perceptive enough to know that something was up and it was making him nervous. I could tell him and he would either have to go back to the hospital with me and be nervous and pacing the floors there, or I could minimize the situation for the time being, and have him at home in familiar surroundings, carrying on with his day in a normal fashion. I opted for the latter.
No decent parent wants to lie to their child. But no decent parent wishes for their child to be wandering around in a heightened state of anxiety, not being able to cope with what is already a stressful situation by anyone’s standards.
Later that afternoon, we learned Bill was having a second heart attack. As I sat in the waiting room while the cardiologist was performing an angiogram on my husband across the hall, I could only imagine how Cody might react if I had to tell him what was going on. I sat and envisioned him pacing back and forth, rubbing his head with both hands incessantly, a look of angst on his face, repeating the same questions and phrases over and over again. “Oh! Where’s Bill?” “Bill will be alright.” “Bill will come home with us.” “Oh! Where’s Bill?”
Then the thought crossed my mind, what if, God forbid, I had to tell him Bill wouldn’t be coming home, ever?
It was not a thought I pondered for long. I quickly pushed it out of my brain. It wasn’t a possibility I could bring myself to consider.
Then it dawned on me. Cody’s Grandma Jo was due to arrive at the house at any moment to pick him up. I had forgotten completely that she was coming to take him to spend the night with her and Grandpa Joe. Frantically, I called her and explained what was going on. A huge relief came over me when she said that she could gather his things from his room—she knows his medicine routine—and that he would be just fine. She gave us her love and best wishes and said she would be arriving at the house soon. At least Cody would be away from the situation for one or two nights. By then maybe we would know more about what was going on and how to better address the situation with him.
As the situation unfolded, it turned out that the episodes Bill experienced were mild. Doctors prescribed new medicines and he was able to come home the next day. When Cody arrived home, he hugged his stepfather for a long time and the sight of his expression going from one of worry to one of joy was priceless.
All right, I admit it: I've joined the legions of fans who love the TV show “Parenthood.” The show appeals to my sensibilities in part because I lack (and long for) the built-in community life that forms its foundation. “Parenthood” focuses on an extended family in which all of the individual families live in close proximity to one another. And ever since my husband and I relocated from Washington, DC to a small town in northern Alabama, I've been wishing that the people I'm closest to would be, well, closer. My family is far away, and my closest friends are scattered up and down the East coast. As such, the premise sounds idyllic to me.
But there's a deeper reason why I'm drawn to “Parenthood.” I was hooked from the first episodes because the producers chose to delve into an issue that most shows would shy away from: a pre-teen named Max's Asperger’s syndrome diagnosis, and the impact of that diagnosis on his parents, older sister, and extended family members. Right away, I was hooked. Since my younger brother Willie was diagnosed when he was 2 years old and I was 4, I don't remember much about that time in our family's life. What I do remember is waiting in a playroom at a diagnostic center, and holding my mom, who wept in my arms.
As such, I was both captivated and scared at the prospect of watching a family—even a fictional family—go through the process. I watched Max's parents meet with doctors, special-needs administrators, and behavioral therapists, and I “recognized” them all. For Max's parents, however, these people are strangers, and the world of autism-spectrum disorders is a dark place. They're disoriented in the process of “leaving normal.” Their son's diagnosis has shaken them to the core, and, initially, they are devastated. (The phrase, “Something is wrong with our son,” comes up a lot in the first few episodes.) However, the doctor who gives the diagnosis does a beautiful job introducing them to their “new normal.” Gently he tells them, “You will help to uncover Max's gifts. You figure out how he learns.”
As I watched, I couldn't help but realize that this was something like what my parents had experienced … except for the fact that, when Willie was diagnosed in the late 1980s, autism was much rarer, and there were significantly fewer supports available. And I can't help but wish that they'd been welcomed into the world of autism with such compassion. Since autism has always been a part of my life, I sometimes forget what a strange, difficult initiation it can be. Watching the first episodes of “Parenthood,” I could relate most to Max's older sister, Haddie (played by Sarah Ramos). She is perhaps the person most unfazed by Max's diagnosis, as she's well aware of his struggles and their impact on family life. “Why is everybody acting like this [diagnosis] is big news?” she asks her father. She cites the myriad of changes that the family has had to make for Max, saying, “It's never-ending. And ever since I can remember, it's been all about Max.” I was touched by her honesty on this point, especially as it was portrayed within the context of a supportive sibling relationship.
For the most part, I give “Parenthood” credit for presenting this storyline. Max's parents go through a realistic amount of stress, and Max has both often-frustrating habits and shining moments. True, some scenes have made me cringe (the portrayal of another special-needs family and their quirks borders on caricature), but on the whole, the show does an excellent job with one family's journey into ASD. Every one of Max's achievements is celebrated by his family. From getting a hit in baseball to talking to a girl on the playground to leading the clan in a fund-raising walk, it's all important to those who love him. None of it is taken for granted, and that's just as it should be.
“Mr. and Mrs. Deutsch, here is your daughter!”
The moment we've been waiting for, over roughly nine months. (And years before that, trying to conceive.)
As they clean her off, I get my Droid Pro out and ready. Sorry, no cigars—tobacco products of all sorts have long since been banned from the hospital. On the bright side, the father is now allowed in the room itself ... and so here I am. No pacing though.
I hold my breath.
Right before I turn blue, a piercing cry from the corner where the nurses are working on her.
My darling little K.D. (Kid Deutsch) is healthy!
I head for the corner, and pick a good spot out of the nurses' way (something I, as an Aspie, have to stop and think about). I aim my phone, hit the camera app, and snap off shot after shot.
And yes, it's a girl. We weren't sure whether we were having a son or daughter, though Emily had a sense it was a girl.
Then after she's all dried off and diapered, they wheel her over to Emily—who of course coos and fusses over her.
Afterwards, they show me to the recovery room, and wheel K.D. up there. I get to pick her up and rock her. This is the first step to showing her that I'm her daddy.
Soon, they wheel Emily up here, and I hand K.D. to her for some skin-to-skin contact. Emily holds her close and talks to her gently. Obviously, they're bonding. I take a video clip and then email it to both my family and hers.
To make a long story short, we're all home now and Emily and I are getting used to being K.D.'s parents, and she's getting used to being our baby.
Michael John Carley, an Aspie and founder and executive director of GRASP (Global and Regional Asperger Syndrome Partnership), has said that maybe we have more Aspies these days because given more social acceptance, more of us are reproducing. Which he's done—and he has an Aspie son. (In fact, that's how he found out about himself.)
So I'm starting to watch for signs in my new daughter. So far so good. She engages people with her eyes and looks around in response to noises. She doesn't seem to be fixated on any particular object. She also sometimes coos and makes other noises besides crying.
I'm hopeful—though right now, of course, it's too early to tell. Unlike, say, Down Syndrome, there's no specific genetic test for AS, nor does AS have symptoms quite as clear or obvious. It's much more of a judgment call, especially since different Aspies experience very different issues ... not to mention that the signs of AS may be much more subtle in girls.
Like most parents, we're hoping for the best ... and we'll deal with whatever comes. Best, worst and everything in between.
This is one of the most difficult things I've ever had to write. There is raw emotion involved, and I'm not sure what else might erupt within me as I begin to tell this story.
Cameron, my 17-year-old son with Autism Spectrum Disorder, whose independence I've had to deliberately formulate and even force myself to allow, was assaulted at his workplace by a co-worker. It has been a horrible "facts of life" lesson for both us.
As I chronicled in my column, "Working for a Living," Cameron was a participant in the Summer Youth Employment Program (SYEP) sponsored by the District of Columbia’s Department of Employment Services. When Cameron enrolled, I saw this as a fantastic opportunity for him to gain real employability skills, all while being in a "mainstream" setting, as this was not a disability-based program. I wasn't sure if Cameron had the skill set that would be required of him, so I sent an email to the SYEP director, asking for guidance and recommendations for employers that would be compassionate about Cameron's challenges. My email went unanswered, but Cameron was assigned to work in the mailroom at the Department of Disability Services (DDS). His supervisor was a transition specialist at the Rehabilitation Services Administration (RSA). I felt at ease, knowing that even though I had not gotten a response to my email, someone, somewhere had taken the information to heart, and made sure Cameron had an appropriate placement.
When Cameron started work this summer, I couldn't contain my excitement. I would anxiously await his arrival home each day, and fire questions at him: "How was your day?" "What did you do?" "Who did you work with?" "Did you learn your supervisor's name?" Cameron was diligent about calling me each day when he arrived at his office, and at the end of the day when he was on his way home. He was, after all, taking public transportation on his own at rush hour. This was when I feared the most for his safety, as I felt he was the most vulnerable during his commute. I coached him about not pulling out his phone to call me until he was inside his office building. We went through hypothetical situations of being approached by panhandlers for money. Or even what to do if he was threatened by a thief.
So imagine my reaction when I learned Cameron had been assaulted at his workplace. I received an incoming call from Cameron's phone at the same time that he called every day to say he was on the way home. But instead of hearing Cameron's voice, I heard the voice of a stranger saying, "Mrs. van der Poel?" This was not a good sign. It was Cameron's supervisor, whom I misunderstood to say, "Cameron has been kicked by another employee." She said the police were on the way, and she put Cameron on the phone. My immediate thought was that this was the equivalent of a school lunchroom incident, where students with low frustration tolerance act out, and behavior interventions are put in place. The idea that the police were involved didn't even strike me as odd, as I thought this would be normal protocol since the incident happened at a government agency.
When Cameron came on the line, I immediately went into "Calm Cameron Down" mode. He was quite upset, told me his face was swollen a bit, but he didn't think anything was broken. It was then that I realized that Cameron had in fact been hit, and not kicked. He told me that another teen—with whom he had been working all along—just came at him out of nowhere. Cameron said the youth hit him and then ran out of the building. Cameron said that another coworker was coming out of the restroom and went and got the “grown-ups.” As we talked, Cameron did calm down. In an effort to get him to think beyond the event, I asked if he wanted to come home, or if he still wanted to go the gym after work as he had planned. Cameron seemed intent on sticking with his gym plan, and this satisfied me that he was sufficiently calm. The supervisor came back on the phone, and said she would complete her report and would walk Cameron to the Metro station just to make sure he was okay.
When I still hadn't heard from Cameron 45 minutes later, I called him to see if he was on his way yet. He said he was talking to the police, and was almost finished. Another 45 minutes went by before he called to say he was on the way to the gym. I picked him up from the gym 3 hours after I received the initial call. I was shocked when I saw him, and Cameron was clearly in a stunned state as well. His face was swelling, and he looked like someone who had just had their wisdom teeth removed. It wasn't until I got home and started photographing him that I realized he was swollen on both sides of his face. When I heard Cameron was "hit" I assumed the singular form of the word. This was clearly not the case. Cameron had sustained several blows to his face and neck, but could remember very few details of the actual beating.
The evening of the attack, I experienced a wide variety of emotions. Surprisingly enough, guilt was one of the primary emotions I struggled with. I was angry with myself for not responding to the initial phone call differently. Why didn't I ask better questions of the supervisor? Why didn't I immediately rush to the scene so that I could support Cameron during the interview process? And then I became angry. How could this have happened? Did the assailant have a record of violent behavior, and was the agency negligent in leaving my son alone with him unsupervised? Why didn't the supervisor herself suggest I come down to the office? Was she intentionally trying to downplay the incident? I came to my own conclusions that the assailant had his own disabilities, as I assumed all of SYEP participants working at the DDS had disabilities.
I didn't know where to begin, but I knew I needed an action plan in place. Since the incident occurred on a Friday afternoon, there was very little I could do over the weekend, aside from ask friends for advice regarding where to get advice. I am not the type of person that believes lawsuits are the solution to every injustice. That said, I did feel I had some questions that needed to be answered, and realized I would need help getting those answers. I decided I should look for legal support, but wasn't even sure what type of legal support I needed. I spoke to the responding officer the evening of the attack. She assured me that charges were pressed against the attacker, and that the case would be turned over to a detective. It took eight days for the police report to be released, meaning it took eight days for a detective to be assigned to the case.
On the Monday following the incident, I received a call from Cameron's supervisor at DDS. She was calling to check on how Cameron was doing. I took this as an opportunity to get some answers to a few of my many questions about the event. As it turns out, the alleged assailant is 17 years old and has no documented disability. The supervisor didn't know that Cameron had any disabilities until he started working there. So my assumption that Cameron had been placed at DDS because of his disability was totally wrong. It was essentially the luck of the draw that he came to work there.
I thought it was such a great idea to enroll Cameron in an employment program that wasn't disability-based. I so wanted to expand Cameron's community beyond his relatively small school population of students with similar disabilities, and get him out of that special needs cloister. Any opportunity to learn job skills AND earn money is a clear bonus. Or so I thought. I've found myself second-guessing the rationale behind enrolling Cameron in SYEP. I'm not going to give up on the desire to increase Cameron’s opportunities for inclusion, but maybe I need to be more selective about the placements I pursue on his behalf. But then again, who could blame me for assuming the DDS would be a good start?
Many people suffer senseless beatings every day—often in places they should be safe. But with the rise of mass shootings, and the outcry to pay more attention to the trail of red flags the shooters inevitably have, I don't understand how this random act of violence doesn't trigger a stronger response from the authorities. A full 10 days after the attack, and it would seem that the "suspect" hasn't so much as had a finger wagged in his face. The motive behind my son's attack seems to be of no consequence to anyone in authority. For all we know, this may have been a hate crime. Cameron may well have been victimized for no reason other than his disability.
I honestly think that if this assault had occurred at a Metro station, I would chalk it up to what an attorney friend referred to as "life in the big city." But this happened in the workplace. By someone with whom Cameron had been working for 6 weeks. The alleged assailant’s identity is known to both the police and to the employer. Isn't this evidence of an all-around systemic failure? Are the anti-bullying campaigns and the "see something, say something" nothing more than lip service? Why are there no consequences?
Actually, there are consequences. But so far they only seem to be for the victim and his family. Cameron and I are forever changed by this event. I think I speak for both of us when I say that a massive chunk of our faith in humanity has been blasted away. I am heartbroken. It's a cruel world out there, and we should be thankful this incident was relatively minor. I've also lost my faith in the agencies that provide adult services. I've had very little hands-on experience to date, but this incident has greatly increased my skepticism. I feel as though I did what I should've done on my end, by disclosing Cameron's disability and asking for guidance in an appropriate placement. The one good thing that has come out of this is that I have lost my naiveté. My eyes are now wide open.
Have you ever heard the quote, “You don’t know a good thing until it’s gone”? This quote has been running through my head for the past couple of days because of an incident occurring right now with a 23-year-old on the autism spectrum named Paul Corby who is being denied a heart transplant—due, in part, to his disability. As I was reading this story I started to reflect on my life in many ways. The biggest reason was because Paul and I are only a year a part in age and have a similar diagnosis of PDD-NOS. It made me think to myself, “Could this situation happen to me?”
As much as I spread the word of community, situations like these make me understand that you should live everyday with purpose. We should be counting our blessings and appreciating what we have because an unfortunate thing I’ve learned about life is that it’s sometimes extremely unfair. No matter if it’s disability-related or not, this is why our lives should be focused on pursuing happiness and going after our goals and dreams every single day.
At the same time, situations like Paul’s make me understand that we must fight for our community members, whether we’ve ever met them or not. We must count our blessings and then also count the ways we can possibly make a difference in others’ lives. Whether it’s through advocacy, awareness, or just being there for those individuals, this is an ability that every person on earth has. It’s the ability to be there for one another.
If we do hope to pursue this, though, we must encourage people to live by Temple Grandin’s words: “Different but not less.” In Paul’s situation, we must make people understand that being disabled doesn’t make you any less of an individual in this world. Of course, any type of transplant operation does come with a great deal of complications. According to published accounts, however, the explanation for why he was denied—with autism in the reasoning—makes us all feel like we are less, and is plain wrong.
Paul’s mother has created a petition on change.org to help persuade treatment facility to reconsider the decision. As I was just telling my friend today, no matter the disability we should always let our abilities shine through. If we do this, we give ourselves the chance to live our lives in the best ways possible. We will never regret doing this.
I stare out the window and watch the storm blow in. Winds toss the trees, and their branches bend and sway. As I was biking over to the library this afternoon, I felt the strong breeze as a welcome relief from the heat of the day. The sky, then as now, is ominous, but ensconced as I am in my second-story alcove, I don't mind; we need the rain. When my husband and I relocated to Alabama in June, we moved into a house just a few blocks away from a lovely local library, and I come every weekday to write and create. And today, I think about the ways in which I am akin to my brother Willie, the traits that tie us together.
My brother and I are both perfectionists; it's hard for us to feel as though we've failed at anything. We get frustrated if we can't master a skill quickly, and we need encouragement in order to keep going. On the phone last week, my mom told me that Willie had started doing something strange with his Sudoku books: When he'd reached a puzzle with a level of complexity that daunted him, he'd started filling in random numbers. Our mom felt that he was capable of solving the most challenging puzzles, but Willie had, apparently, decided otherwise. During his daily Sudoku time, he'd fill in the boxes with incorrect numbers, rather than leave them blank. Our mom told him, “Willie, if you don't like to do it, you don't have to do it! It's okay.” Willie did not like the idea of changing his daily routine, or being called out on his new practice of “cheating” the numbers. He tore his Sudoku book to pieces later that day.
When I hear stories like this, I just shake my head, ruefully. A younger version of me would be critical, with thoughts such as, “Seriously! Why can't he just chill out? It's not a big deal.” Now, however, my thoughts are different. Having acknowledged how much I struggle with perfectionism, I am more merciful toward my brother. As Willie finds reassurance in his “Oops, no big deal!” mantra, I know that those same words have the power to put me back in perspective, too. And since my (very patient) husband has been teaching me to drive our stick-shift pickup truck for the last few weeks, I've become better acquainted with my tendency to personalize “failure.” When I stalled out several times at a stop light on a drive through our town, I felt such embarrassment and frustration that I handed the keys to my husband. As he drove us away, I promptly burst into tears. (If there had been a Sudoku book instead of a pickup truck before me, I might very well have torn it up.)
No matter that I'd managed to navigate the truck from one side of town to the other before the goof-up occurred. No matter that, as it turned out, I was in third gear at that stop light … and if you try to go forward in third gear from a stop, you are bound to stall out. In the moment, though, none of those facts mattered much to me; I was awash in shame. I couldn't drive the way I wanted to, and I'd screwed up in front of other drivers, and in front of my husband. I'd stood out from the crowd in a negative way. I wanted to quit, and maybe move to another town.
But then we got home, and went for a long walk in the fading light. Walking is like meditation for me, and it is for Willie as well—he loves to go for long walks and take the lead. As my husband and I moved through the streets, I thought of my brother and dried my tears. Willie and I both need to learn that perfection isn't about never messing up. Instead, I believe, it's about the strength and maturity it takes to pick oneself up and try again. A storm had blown through me that day, but as it passed, there was quiet, and a chance for redemption.
Over the course of the summer, my mother and I have been heading out to a park near our house to watch the sunset. We have done this many times over the years, but I feel that this year is the first year that I have truly appreciated this activity. I have begun to feel strangely comforted by the sight of the big yellow orb slowly turning to orange and then a shimmering red as it sinks beneath the water. The colors are mesmerizing to me and always grab my attention.
Until this summer, I did not care much for sunsets, mostly because of the peculiar reactions I have whenever I look at the sun. My eyes are very sensitive to sunlight, and most of the time I find looking at the sun to be very overwhelming and distracting. The sun has caused me to experience a sensory overload many times. It floods my eyes and causes me to look in every other direction but straight at it. I try to avoid looking at it most of the time so I can keep my vision clear. I will try just about anything to block the sun out of my vision, whether it be turning down the brim of my baseball cap in the sun’s direction, pulling down blinds or shutting curtains on windows, or wearing sunglasses. All of these methods work fairly well, but if the sun moves in a different direction in which they cannot block it, their effectiveness is greatly reduced.
Consequently, when I am watching sunsets, I tend to take quick glimpses, rather than watch the process all the way through. The part of the sunset that I like best, when the sun begins to sink below the horizon and is not staring me directly in the face, does not usually occur for a while after we arrive, so I tend to read a book to pass the time. Looking at the book gives me the opportunity to rest my eyes after looking at the sun for a bit; the book’s pages provide a muted counterpoint to the glaring rays. When the sun hits the horizon, I feel immense relief because it is not causing irritating glare anymore. Then, I am free to enjoy the sun sinking lower and lower until it disappears. There is no other sight on earth quite like it to me.
Until recently, however, I did not think of sunsets in a nostalgic or sentimental manner. Often on sunset-watching trips, my mother and I travel with other members of my extended family, usually my aunts. When we get to the spot where we normally watch the sun go down, they commence into chatting with each other about other sunsets they have seen during their lifetimes as well as other topics. As I listened to them talking each time we were together, I found it fascinating that my family would place such emotional weight on something as routine and common as a sunset.
After thinking about it for many weeks, though, I have developed a peculiar sensation. It is a desire to appreciate nature more whenever I have the opportunity. This way of thinking still startles me because I usually like to stay inside the house. It is so different from the way I usually think, but I am getting used to it.
During a recent sunset-watching trip, I saw something else which reminded me of all of the different forms of life which go on around me but which I do not usually notice. I was sitting on a bench, taking in the park and all of the people who had gathered to watch the sunset. The only thing ruining this picturesque scene was a small bird crying which became noticeably louder as the minutes progressed. At first, I tried to ignore it, but the bird just wouldn’t let up, so I asked my mom to see why the creature was putting up such a fuss. She determined that the pestering noise was coming from behind an old rotten log. When she looked behind the log, she reported that it was a bird guarding some broken eggs. There was the bird, glancing down at its eggs to make sure they were safe and sound, then turning its head up toward any nearby passers-by and screeching at them in warning not to interfere with her children. I both admired her tenacity in defending herself and her nest from intruders, but I also pitied her lack of awareness of her children’s fate. It left quite an impact on me to know that she would protect her children to the very end. It was one of the most moving events that I have personally witnessed in nature. The sunset that night was especially beautiful.
Sunsets are a common event in my life, but now I truly appreciate them. I am continually amazed by how beautiful, moving, and meaningful each one is to me. I cannot believe that it was only a short while ago that I would not have even let them cross my mind. They have definitely become worth the watch for me, and I hope I will be able to see and enjoy many more sunsets during my lifetime.
It was Brittany’s idea. But it took a small army to pull it off.
“I want Madison to be here for the wedding, Mom,” she told me over a year ago, soon after her engagement.
“OK,” I said, wheeling up to her spot at the breakfast table. “What are you thinking?”
And she told me her simple-sounding plan.
Get Madison from her residential school on the day of the wedding. Bring her into the bridal dressing area after Brittany had stepped into her gown. Take pictures.
“Then Madison could go back. It would be a quick visit, Mom, tightly scheduled so she shouldn’t get upset,” she said. “It would be just the two of us for some special pictures,” she told me, her eyes dancing at the thought of a professional photo of the two of them, something I’d been unable to do since they were in elementary school.
Pictures were rated the number one priority in Brittany’s grand wedding plan—above the music, above the food, above the gown. These “captured moments” trumped every other wedding element. A photo with her sister was a must in her mind.
“Ok, Britty, we’ll try to make that happen.”
And we did.
The search for a bridesmaid-like dress was an adventure as we tried to find something the same color, but with a more comfortable fit and material that would not irritate Madison’s sensitive skin.
We knew she could not wear the matching spiked-heeled shoes, so we ordered three flats of the same color that sported the signature peony, Brittany’s bridal bouquet flower and the focal design of her gown.
We made special arrangements for doing Madison’s hair and makeup, giving the stylists a short primer on autism while instructing them to keep their efforts simple and flexible.
And then there was the special bouquet. Since each of Brittany’s bridesmaids had a different white-flowered bouquet, we decided to take flowers from each to create a composite one, just for Madison. Holding it, we thought, could help keep her hands settled, redirecting her tendency to hand-flap.
We had extra help, extra meds, extra plans and extra attention to every detail as well as lots of prayers from family and friends, “Please Missy Madison, don’t have an upset.”
But if she did, we had a plan for that, too.
She arrived on time and in a good mood and was dressed and coifed in a surprising flash. We didn’t count on the mirrors, forgetting how happy she could be to just look in the mirror, giggle, and “eeee” at her reflection.
We’d also forgotten the calm that comes when someone brushes her skin (for make-up this time instead of as a therapy brush) or touches her hair.
Suddenly, she was ready. It was time for her to see her sister. I held my breath as she came into the room.
“Madison, give Mommy a kiss,” I said, hoping to ground her with our customary greeting.
Now I needed to orient her to the new situation. This time, I was winging it. How could I have ever prepared her for the scene that was about to unfold when I wasn’t prepared myself?
Brittany was stunning; Madison angelic. But it was the loving care between my daughters that sparkled the most, lighting up the room with a special moment.
Brittany was right—it had to be captured. I gave it my best shot.
“Madison, who is it?” I said pointing to Brittany.
“Burtney,” she said quietly, using her pet name for her sister.
“Go see Brittany, Madison,” I said, gently directing her to the other side of the room.
Brittany greeted her. Then Madison turned around and began to look around at the bridesmaids, the photographer, the mothers, and other friends—15 of us seemed to distract her as the photographer tried to get a good angle.
Madison started to look uneasy, a little overwhelmed.
Then Britty handed her the special bouquet.
“Madison,” she said, “What is it?”
Madison looked at Brittany and then down at the bouquet. She took her finger and gently touched a petal, and said, “It’s a flower!” in her best Barney-the-purple-dinosaur voice.
The tension was broken. We all laughed with her and relaxed. The photographer went to work.
The result: one powerful sparkling moment—its images now captured forever.
Indeed, one idea that was worth every ounce of effort and the small army it took to achieve it.
My deepest gratitude to “the army:” Pat, Becca, Cindy, Brittany, Rachel, Rennie, Renee, Beth, Mary, Lydia, Janice, Laura, Jill, Paige, Lauren, Andrea, Ashley, Sue, Amanda, Joivette, Modesta, Elizabeth, Monica, Sharon, Jennifer, Krissy, Sherise, Cathy, and the kind folks at Nordstrom and Zappos.com.
I really thought this week’s column was going to write itself. I purchased a new game for family game night, and even though I’ve already written one column about the games my family frequently plays after dinner, I was convinced the newest addition to the collection was going to be great fodder for a column. The game I purchased, Tell Tale, is a storytelling game where players create a tale based on cards with various pictures on them. As I’m paying for the game at the toy store, I’m thinking of how great it’s going to be to have Cameron create a story and witness him flex his conversational muscles. I’m mentally writing my column about this wonderful parental experience I’m about to have. Yeah well, this is not that column I started in my head at the checkout counter. That wonderful moment I imagined at the dinner table didn’t quite happen according to plan.
Round One of the game seemed promising. We each received four cards, and arranged the cards as we saw fit, and each told a tale based on our own cards. Cameron seemed fine with this format. For Round Two, I had the clever idea to mix up the format a bit, and suggested we build a story together. Each of us played a card, and added to the previous player’s story with our own contribution. This is where things took a turn for the worse. Cameron found very little humor in our plot twists, and became visibly upset by the silliness of it all. When we started Round Three using this “build a story together” format, I thought Cameron’s head might explode. He was so upset, I had to go into my “calm Cameron down” mode, and give him the opportunity to retell the story from the beginning, without input from anyone else. I hadn’t realized how upsetting it would be for Cameron to have a plot twist wreck his plan for his next turn.
These moments in parenting, when I’m unexpectedly confronted with Cameron’s challenges, can catch me off-guard. I’m always looking for signs that Cameron isn’t nearly as impaired as his testing indicates, and am glad to say I often find those signs. But when something like this low frustration tolerance rears its head when I least expect it, I find it very deflating. I was so sure the Cameron was going to exhibit the ability to build a story and articulate his thoughts, I hadn’t considered what would happen if he couldn’t. But, I suppose these moments of the having the wind in the sails deflate a bit are just as important as the joyful moments I am ever hopeful for. These less than joyful moments keep me on my toes. They remind me that I can’t assume anything when it comes to Cameron’s future. Just because Cameron can balance his checkbook and use public transportation doesn’t mean he’s ready for anything the world throws at him. But there is a silver lining: I realize it’s been a long time since I’ve had that sinking feeling in my stomach that coincides with the less than joyful moments. So I realize these gut-wrenching moments are fewer and farther between, and that gets the wind puffing up those sails again.
True to her promise, my mom called me on Sunday morning. Her call came through when my hands were covered in soapy water from the morning's breakfast dishes, and I raced to dry them in time to pick up. I wasn't going to miss hearing my brother Willie play the Chopin Barcarole for the offertory music at church. (As I wrote in last week's column, the word barcarole comes from “barca,” Italian for “boat,” as the style originates from folk songs sung by gondoliers in Venice.) If I couldn't be there in person, I was definitely going to be there by phone.
As he began, I could barely hear the music. Though the notes were soft, they were clear; I could tell that he was playing well. Moreover, I could hear him through the music; I could hear his playful personality, as well as all the difficulties he's had to endure. As I listened, I found myself understanding why he loved the piece—and I was so proud of him for playing and performing in front of a crowd.
Nevertheless, I didn't let myself surrender to the experience. My husband and I had been planning this Sunday's canoe outing all week, but we'd both overslept. We were running behind on our planned leave-time. This being the case, I leaned in close to listen to Willie play … as I tried, simultaneously, to wash my French press coffeemaker. Though I ran the water as quietly as I could, it still drowned out some of the sound. And while I'm not exactly proud of that moment of multi-tasking, I want to share it here. I know that parents and caregivers face many such moments every day, and I admire the way in which they navigate these tricky waters. How do they know, for example, when it's right to let go of one's plan for the day (or the hour, or the moment) and give someone their undivided attention instead?
So, while I wish I hadn't multi-tasked, I do want to own up to it. Owning up helps me to understand more about why I did it. As Willie was playing, I wanted to listen to him wholeheartedly, but I also felt the desire not to disappoint my husband by being late. This, combined with my semi-compulsive need to finish tasks I start, meant that it was hard for me to put down the dishes and listen. Plus, I knew that, if I stopped and let the music inhabit my consciousness, I would be weeping in no time. And, of course, that's the most powerful reason why I didn't make myself stop doing the dishes. Listening with my whole being would have meant vulnerability, and tears … but it would have meant joy, too. For me, there is always joy in hearing Willie play.
Despite my attempt to avoid tears, what happened as the song drew to a close almost did me in anyway. As the final notes faded, there was a tremendous crash of applause from the congregation. Since my mother was sitting in the audience, the clapping was much clearer than the music had been, and it washed over me in wave after wave. It seemed to shout, “Bravo, Willie!” I thought: They know what we've been through. They've prayed for him for years, and in this moment, they get to be proud of him with us.
The notes of the barcarole were playing in my mind as we headed out the door. The day didn't look promising; we drove through a steady rain. But the sun came out as soon as we got onto the creek in our barca. I hadn't told my husband much about Willie's playing, but he seemed to sense that I needed cheering up. As we came to a quiet section of the creek, he took a playful risk and stood up at the back of our canoe. At first, I told him, “That's how capsizes happen!” but then I started laughing; the water was shallow and the mood was light. Standing there, he was as proud and well-balanced as any Venetian gondolier, and I loved him for it.
We're taking one last trip to Annie's Steak and Seafood on Maryland's Eastern Shore for at least a little while; our baby is due in a matter of weeks. Even after we've established a bit of a routine with our baby we'll probably need to find a babysitter next time we go because Annie's is fine dining.
So, this time we haven't made a reservation. When we get there, we allow ourselves some time to walk around and savor the portside ambience—and I snap a few pictures (all right, more than a few) and even take a couple of video clips. (My Droid Pro and I are a team, and just like a pair of dancers we've got our point-click-and-email sequence down to a science!)
When we finally go inside, we get a table quickly. (They know us—specifically they know us as people who always act nicely to everyone, tip well, and never leave messes behind.) When the waitress first seats us, I ask her:
“Just an etiquette question, if you would?”
“Would it cause a problem if I took pictures of the food here, once you bring it out? I might even post them on Facebook or my blog.”
“No—of course not! That's fine—just as long as you say how great it is.” (Chuckles)
“Hey, we know it's great—that's why we're back!”
Because being an Aspie means choosing between asking about something new you want to do, not doing anything new, and risking getting yelled at or worse.
Then after she leaves, Emily wonders:
“I thought you didn't like taking pictures of food in restaurants.”
“Normally I don't. But we aren't coming back here in a while, you know. As for the etiquette, that's why I asked [the waitress].”
(Our table is right next to the window, which I'm facing. Thus, Emily's the only person who might see the flash. And she doesn't seem to mind.)
Then the waitress brings us our food. I snap a picture of Emily's entrees, hit the Share button, go to email where the picture's already uploaded, address it to Emily and me, hit Send, then go back to the camera app and take a couple of pictures of my own food, in the same sequence. (Given the number of steps in the process, guess why I started with Emily's food?)
Emily points out semi-jokingly: “I don't know what kind of monster I created … I tell you, if you want to take pictures during my delivery, you'd better use a real camera. If you take one picture, then go through all those steps for five minutes before taking another while I've got the baby in my arms, I just might throw something at you … I know I shouldn't, but I just might!”
Being an Aspie means appreciating when your wife gets this blunt—because otherwise you might not get the message.
We start eating, and the waitress comes by to ask if everything's OK. We assure her it is.
She comes by again. Everything's still OK.
The third time she visits our table after having brought our food, I suggest one thing we could use is fewer interruptions. She thanks us, apologizes for any inconvenience and leaves.
Emily: “That was rude!”
I say: “What?!? That's a legitimate request. On the other hand, rude is complaining about me in front of everyone here!”
Emily rolls her eyes and shakes her head. I've always had this insolent, unrefined charm.
Maybe I should have asked, “Would it be OK if I ask you not to interrupt us quite so often?” Or would that have been passive-aggressive? It's a tough balance between asserting yourself and needlessly upsetting others … especially if you're an Aspie and thus don't always have a very good reading on the situation.
We finish our dinner, and then go outside where we take a last walk on the pier. I take a few more pictures and a video clip, and then we head home.
Have you ever had one of the moments when you're just about the drift off to sleep and you suddenly bolt upright as you remember something you've forgotten to do? I've had that feeling for almost a week now. There's something I should've done a long time ago, and I've left it undone until now. Like my recurring nightmare of entering a final exam only to realize I had forgotten to attend the class all semester. So what, you may be asking, have I left undone that has left me we such a feeling of dread? I have forgotten to socialize my son.
Quite honestly, socialization has never been that high a priority for me, in terms of readying Cameron for the world. My rationale has always been that I would never be successful in making Cameron enjoy socializing, so why bother? If he is able to function in society in terms of "community skills" isn't that enough? By community skills, I mean that he can use public transportation, make purchases in stores, order food in a restaurant, and the like. So what if he prefers the company of himself in the comfort of his own room? Is that such a bad thing?
Unfortunately, it may be. It has been long been proven that socialization is critical for overall health and happiness. The recent Colorado shooting has certainly thrown some light onto the subject of isolation. Not that I'm saying the Cameron is ordering an arsenal online while he's up in his room, but I'm becoming acutely aware that socialization is not just a nice to have. It's a necessity for a long, successful life.
I think I've been kidding myself into thinking that school and work are providing Cameron with the necessary socialization. But I know Cameron well enough to realize that even if he goes to the school dance, he's still standing off to the side or dancing by himself. I've seen him in the street when neighbors try to talk to him when he's out with our dogs. He says the least amount of words possible in response to their greetings, and doesn't lose a step towards his destination.
Now that this issue has my full attention, I'm of course trying to fix it overnight. I've started Googling camps and am now trying to figure out if I can get Cameron to Buffalo on Friday, with all the gear he needs for this teen adventure I've found. (This is what it's like to live with me ... I get an idea in my head, and it's off to the races.) But if I find a camp at this stage in the summer, and get Cameron enrolled, will it be worth what it's meant to be? Will it be the catalyst that Cameron needs to open up that socialization compartment within himself? Or will it merely satisfy a well-meaning mom's desire to check another thing to try off the list? I think perhaps I'll call a friend and discuss this with her.
Last week I was at the Second Annual Midsouth Autism Conference in Southaven, Mississippi hosted by Transformations Autism Treatment Center. At the event I had the wonderful opportunity to do a breakout session about my life on the autism spectrum called “Overcoming Obstacles: The Kerry Magro Story.” With my last 15 minutes, which I left for answering questions, one of the first questions that was directed to me was from a young mom who simply asked “How can I make my son better?”
Even though I’m not the best when it comes to reading complete body language, looking at the mother in the audience I could see that it was an emotional topic for her to say the least. I can completely understand that. Autism is a topic that families constantly struggle with each day. My response was shocking to me because the first four words that came out of my mouth were “Take care of yourself.” There was a short pause as I wasn’t sure exactly why I said that. Looking back, however, I know exactly why: A great number of parents I see today aren’t taking care of themselves.
When it comes to taking care of an adult on the spectrum, it’s essential whether they are just newly diagnosed or have been considered on the spectrum for years that you care for yourself as much as you care for them. It’s a universal need toward progress. If you are stressed, not eating right, not getting enough sleep, etc. you might not be 100 percent available when it comes to taking care of your loved ones. To be in a position to help anyone you first must care for yourself and then use that ability to help your loved one—or the world—while making sure it reflects back to you as well.
For example, whenever I do a speech I usually tell people about the wristband that I’ve worn for five years, which says “Make a Difference” on it. When I point this out I say I want to make a difference but not only in the lives of others but in my own life too. When I say this I’m stressing the fact that it must be a two-way street. Taking care of someone else also means taking care of what I’m doing.
This is something I have rarely mentioned in the past because I thought it was rhetorical, but is it really? At the end of answering the young mom’s question, she came up to me later and gave me a hug, telling me what it meant for me to tell her that. I know sometimes I fall out of this mode as a young college kid too. It’s just as essential that we teach our young ones how to care for themselves and others because it helps so much with our passions to be anything we ever dreamed of being.
So remember, no matter the circumstances, take care of yourself and make sure your loved ones do the same.
“Willie, someone wants to say hello to you!” my mom called out. I smiled, anticipating a conversation with him. That day, my mom and I had been discussing various dietary and lifestyle changes that might help to support Willie (a heavy topic of conversation even on a good day). Though we contribute as best we can to Willie's health and well-being, looking into new protocols and therapies can be overwhelming at times. We have to continually remind ourselves to start small and be sensitive, to keep the process as peaceful as possible.
As I was considering the implications of possible new therapies, Willie came on the line. His first words (“Hi, Caroline!”) were spoken in as only a younger brother could, in a tone of voice that was mostly cheerfulness at having received my call with just a touch of “Oh-gosh-it's-my-older-sibling-calling-again” thrown in. I laughed. My mom hadn't told him who was on the phone, but clearly he was catching on to my pattern of calling on Thursday afternoons. “Hi, Willie! How are you?”
We went through our usual questions, and he told me a few select details of his day. He'd gone to the store with our dad and practiced piano … and, with a little prompt from our mom, he also told me that he'd be playing a piece on the piano for the congregation of my mom's church on Sunday, during the offering.
“You will?!” I exclaimed. “Willie, that's great! That's so brave. That's something that a hero would do.” I said this remembering that my parents and Willie have an ongoing dialogue about what a “hero” would do, versus what a “villain” would do. It's a helpful way for Willie to conceptualize what constitutes positive and negative behavior, and we use familiar characters from various beloved Disney films for points of reference.
“Yes,” he said, calmly. He didn't seem nervous at the prospect of performing.
“What piece will you be playing?” I asked.
“Umm … the barcarole!” he replied, with enthusiasm. (I looked up “barcarole” after our conversation, not knowing at first whether it was an artist or a type of song. In this case, Willie was referring to a piece of music composed by Chopin for solo piano, in a style called barcarole. “Barca” is the word for boat in Italian, and the style originates from folk songs sung by gondoliers in Venice. We've actually been to Venice as a family, and as such, I liked the idea of Willie playing such a melody.)
“Wow! Is the barcarole your favorite?”
“Yes, it is my favorite.”
The conversation turned, and we chatted for a few moments more. Before we said goodbye, I asked him his recommendation on the best dog breed for my husband and me; with no hesitation, he said, “A Labrador Retriever!” Willie is brilliant at recalling specific details within subject areas that he loves, and he loves dogs. I had no doubt that, in making his recommendation, Willie was remembering previous conversations in which my husband had expressed his strong preference for yellow labs above all other dog breeds. He's a smart one, my brother.
We said goodbye, and he passed the phone back to our mom. When she came on the line, I told her how happy I was that Willie was going to be able to play the piano and share his music with people at church. And then I asked, “If it's not too much trouble, could you call me on Sunday morning, when Willie's playing? I'd just love to hear a little bit of that barcarole.”
“I'll do my best,” she promised, and there was a little silence there, an intake of breath that called to mind the words of Marisa de los Santos in her novel “Belong to Me.” And when I thought of those beautiful lines, I couldn't help but adapt them for that moment between my mother and me: “And even though neither of us moved, even though the same [distance] that had separated us seconds before still lay between us, we were suddenly right next to each other, inches apart, bumping elbows in the same small boat of loving ...”
The same small barca, that is.
About once every summer, my mother and I make a concerted effort to clean my room out of books, magazines, and other paraphernalia which I am no longer actively reading or using. This has become an annual ritual because I tend to accumulate items rather quickly and inevitably run out of room to put it all. When I was younger, I detested cleaning out my room because I tended to form emotional attachments to just about every item I came across. I would become anxious, make noises out of nervousness and frustration, and pace around the room as my mother and I tackled the task of going through my “things” and deciding what stayed and what went. It took a great deal of time because she had to keep me calm and still deal with handling the clearing of my room. Now, however, I am more comfortable with letting go of some items, so the pain has significantly lessened.
Another change to this year’s room cleaning saw me taking the lead instead of my mother. In the past, it was she who looked at every item and helped me decide what to do with it. This year, I did this entirely on my own after she suggested a plan of action. She helped me to divide all of my items into four distinct groups, and I was left to carry out the process.
The first group of items stay in my room either for sentimental value or because I want to read or use the item. The second group is to be stored in bins downstairs in the basement; I may not want to keep the items in my room, but I still want to keep them in case I become interested in looking at them again in the future. The third group of items was reserved for giving away to others. The fourth group consisted of items which were of no value to me or anyone else I knew, and were disposed of.
I was pleased at how fast I made my way from one section of my room to the other, making decisions quickly and efficiently. I had many bookshelves that were full with all kinds of reading material, but I cleared many spaces as I went.
The two bookshelves on either side of my bed received perhaps the most thorough cleaning of all. Over the years, I have kept the contents of these shelves largely the same because they contain some of my favorite books, and I usually do not want them placed where I do not have quick access to them. This year, however, I found that, to my surprise, I could live without a number of book series and other items I had kept on the shelves. This freed up a lot of room which I filled in by taking books from different areas of the shelves and organizing them into different groups based on certain themes. This rearrangement served to get rid of a lot of clutter which had built up in recent years and organized my shelves in a more efficient manner. Of course, some parts of the shelves did not change at all, much to my delight. I do not think I will ever take any of my Dr. Seuss books, general information books, or “classic” story compilations off my shelves as I greatly cherish them.
All told, every portion of my room was thoroughly cleaned out and rearranged except for one set of shelves which contains a number of Winnie-the-Pooh, “Sesame Street,” Disney, and “classic” books which I have never altered.
I was surprised by how much I was willing to let go; it is usually an internal struggle for me to decide whether each and every item is worth keeping on my shelves. I am not sure why this did not occur this year. Perhaps it is because as I have grown older, I have become more mature, and I am able to make these kinds of decisions without obsessing over each and every item in my room. I know that I am now willing to leave some parts of my life behind, move on with others, and, at the same time, I can retain what is important to me. I am sure that my room will undergo further changes during next year’s cleaning, but I am delighted to know that I will be more comfortable making these changes.
I have a favorite phrase that I use quite a bit with my staff in Career Education: “In my perfect world …” Over the years I have found that if we approach the question of what we want to offer our students each day from that premise, we are more likely to have a chance of achieving the desired results than if we were to start from a place of, “Okay, so what can we do?” Giving our students the tools they need to have the best chance at success in the adult world does not come easily, or without financial considerations. In my perfect world, my department would be able to increase the number of community-based businesses with whom we partner, and reduce the ratio of students to job coaches to allow for more individualized attention on the job, particularly with students who are new to off-campus work. In my perfect world, budgetary considerations would not preclude the addition of new staff to my department to support these students.
However, when the allocation of funds from year to year is either cut, or remains stagnant in the face of increasing costs, perfect-world scenarios move closer to the realm of fairy tales than practical solutions. Transition-age students with developmental disabilities are facing a world of adult services that is in no position to pick up where our high schools leave off. Students who have spent years in preparation for the adult world—working with the belief that services such as job coaching will be a part of their work life after graduation—are finding out that this might not be the case after all, or if it is, that it might not happen in time to do them the most good.
My students need opportunity after opportunity to practice, practice, and practice some more. They need to learn what failure looks like, what it feels like, how to respond to it in an expected manner and not in such a way that they lose their first job within a week of their start date. With programs at the high school level such as my school’s Career Education program, we can give them that chance. We can talk them through the rough patches and provide praise and tangible reinforcement for a job well done while reminding them about what the expectations in the adult world will look like.
In the final cost-benefit analysis, if our legislators and representatives remember nothing else, I urge them to please remember this: Students receiving special education services for developmental and intellectual disabilities will typically receive these services from Early Intervention through the school year when they turn 21. These services can include 1:1 support, intensive related services such as speech and occupational therapy, and small class sizes from preschool onward. I’m a teacher, not an economist, but I have been in the world of special education as a parent and a teacher long enough to know that the costs for even one school year of services at these levels can run high into five figures. Multiply that over the number of years a student with developmental disabilities is in school, and then decide if it is cost-effective to stop short of doing whatever it takes to make sure these young people are crossing the finish line.
Wouldn’t it be a perfect world if students with developmental and intellectual disabilities could simply relax and worry about the things high school students are supposed to worry about rather than whether they will have the supports they need the day after graduation? In my perfect world, my seniors this year can worry about who to take to the prom, where they want their senior class trip to be, and where they’re going to work after they graduate. Nice, normal high-school stuff. Trust me when I say they’ve worked harder than any child should ever have to work just to make it through to earning the right to put on that cap and gown. A little bit of a perfect world scenario would be just what the doctor ordered.
I've said before that I have two only children. The age difference between Cameron and his sister is eight years, and they are opposite in every way imaginable. They love each other deeply, and sibling rivalry has never been a topic of any parenting book I pick up. We do not face the same issues many of my friends with children closer in age face, and so I refer to my children as two only children. But last week, when my daughter was at her annual checkup with a new pediatrician, the doctor asked if there were any siblings at home. I said, "Yes, she has a 17-year-old brother ... Half-brother, actually."
To which the doctor replied, "But you've raised her as an only child, right?"
Suddenly my jovial comment of having two only children landed in the pit of my stomach. What exactly did the doctor mean by her question? How does one raise a child as an "only child"? Is this an accusation of some sort? Is there a difference in how you raise one child versus multiple children? Was the doctor insinuating I had a spoiled brat who thought the world existed only for her own benefit? If my daughter and Cameron were closer in age, would that significantly change their personalities?
Having children closer in age was not in the cards for me. Back in the day when I was dreaming of a family, the "plan" had been two children spaced about two years apart. When Cameron's second birthday rolled around, I was missing a critical component for sibling production: a father. But as it turned out, having Cameron as an only child for eight years (and finding a new husband) was a good thing. My attention wasn't divided between Cameron's needs, as I found out they were "special," and the needs of an infant. By the time an infant came along, Cameron was mature enough to be excited about a new baby sister, and not threatened or bothered by her. We even went so far as to invent a special holiday for Cameron, in honor of him becoming a brother. We celebrated Big Brother's Day for the first time when Cameron's sister was around 4 months old. Cameron considered his sister a real blessing, and not just because of the present he received on Big Brother's Day. He really loved the feeling of our family becoming, in his mind, balanced by the addition of a female child. It was very symmetrical: A male and female adult pair, and a male and female child pair.
Of course, there's no way of knowing how life would be different for either of my children if they had been born closer together in age. As it is, I love the uniqueness of the individuals I've had a hand in creating. I love that my parenting muscle has been flexed in that there are very few occasions in which I say, "Oh yeah, I remember this phase." I get to experience everything fresh and new with each of my children. So the answer is no, I'm not raising my children as only children. I'm raising them each to be the truly unique, magnificent individuals they are. They both respect and appreciate each other, and the family unit of which they are critical components. And they're not the ones.
My son is normally a gentle, sweet-hearted, curious young man who loves to learn, and be liked and loved, as well as to like and love others. And he revels in it when others learn from him. But sometimes if he gets in a mood where he doesn’t particularly feel like doing something—such as school work or chores—then he will on occasion use manipulation and even become a bit of a bully to attempt shirking the task. While Bill and I both let him know right up front that choosing such behavior won’t be tolerated, he can be intimidating to those who don’t know him so well.
This was the case yesterday when Zach came and Cody was in one of these moods. He was agitated when it was time to make the bed. He hit his head when Zach asked him to vacuum his room. He wouldn’t even look at the dusting wand. He was oppositional about anything and everything Zach asked him to do throughout the day. And as much as Zach tried to get to the bottom of why this was happening, Cody was not very forthcoming with information regarding the matter. He only continued to act out in a way which was stressful for Zach and disappointing to us.
One of the most effective tools of discipline we have found to correct an unseemly attitude is grounding. Grounding for Cody is not the traditional form of grounding other parents might use for their neurotypical children, but we still mean it to refer to a loss of privileges. Neurotypical children might be restricted from using the car on the weekends, going to that concert they had so been looking forward to, or perhaps their cellphones are confiscated for a period of time. But for Cody, grounding is more along the lines of losing access to treats. Instead of having his favorite nightly snack, he might have a choice of carrot sticks or a granola bar. Instead of having his favorite soda, his choices of drink might be limited to milk, juice or water. He might be under direct supervision for a period of time instead of being able to roam about freely. These simple things are quite effective. But it is only things that are privileges which are restricted. Never, ever, would we withhold necessities!
Cody has always been very quick to take it to heart when he knows that we are unsatisfied with his behavior and we know he can do better. Normally, he strives to do well and please us. And he’s very sensitive. So it doesn’t really take much to get the point across.
We use visual cues for many of his daily routines, and we use them for situations like this as well. We wrote on the dry erase board, “Cody is grounded. He must be good to be ungrounded.” When he can see this, we don’t have to verbally remind him all the time. This way he can learn from his mistake, without feeling like we are browbeating him.
Cody is much more apt to remind us that he is having good behavior, which is perfectly fine with me. It tells me he knows that he is putting forth good effort to let us know this is not a circumstance which he is going to dismiss.
By the same token, we also make it visually known that we see his efforts. The next day, Cody’s Nana—Bill’s mother who lives with us—wrote on the board, “Cody has been good all day.” That way, it is like he can see that written down in black and white and see it as a contract of sorts, one in which both parties are doing their utmost to meet the stated agenda.
Tonight, Cody received the news that he is no longer grounded and he is quite the happy guy. He celebrated by having his Honey Bun and Root Beer. As I write, he is roaming about freely and happily talking about his plans with Zach tomorrow to go to one of his favorite restaurants and to a couple of his favorite antique stores. We asked him how he plans to behave when Zach arrives tomorrow morning. With wide eyes and a lively tone in his voice, he enthusiastically replied, “I’ll be good!”
This week, as our regular phone conversation was drawing to a close, my mom said, “Oh! Did I tell you yet about our day at Dorney Park this past Monday?”
“Nope,” I said, “But tell me all about it now.”
She told me her version of the story of the splash park, and then put my brother Willie on the line to tell his. After quizzing him with the usual inquiries (“How are you?” “What did you do today?”), I asked, “Where did you go on Monday?”
A pause. “Ummm …” He was trying for the answer, and seemed concerned that it wasn't coming to mind right away. “Ummm …”
“Did you go to Dorney Park?” I asked gently.
“I did go to Dorney Park!” he exclaimed, sounding relieved.
“What did you like best about Dorney Park?” I countered.
There was no hesitation this time. “The roller-coaster!” he said, with glee in his voice.
As he said it, my mind zoomed back to the first time I'd been to an amusement park with Willie. It was Busch Gardens in Williamsburg, and we were both in grade school. I don't remember much about that vacation, but I do remember our first major roller coaster ride. It was on a ride called the Loch Ness Monster, and it was a black-and-yellow swirl of track that shot up high and dove down low and did similarly terrifying things.
Given that just looking at the thing was intimidating, I'm not sure exactly how we as a family convinced ourselves to stand in line and ride it, but that's what we did. (Willie just barely made the height requirement, and he did state clearly that he wanted to go with us on the ride.) And as we strapped ourselves into the seats, I remember my mother encouraging both of us to scream, saying that the ride would be that much scarier if we didn't. And I obeyed; I screamed and screamed, hoping to drive away the rushes of fear that came at me with every turn of the machine. But Willie was silent the whole time. Was he not afraid?
When we stepped off the ride, our legs were all wobbly; we leaned on one another for support. “That was wild!” we exclaimed over and over again. My parents were particularly curious as to how Willie had felt about it. “Willie, did you like the roller-coaster ride?” they asked.
“Yes, I did!” he said, his voice wavering.
“Did you really like it?” (Even then, when asked a question of preference, Willie and I both tended to be what Anne Lamott calls a “Politeness person.” Responding “Yes” is Willie’s default mode. To this day, for example, he'll say he likes a certain new food, while his grimacing face gives away a very different opinion. Neither of us has any kind of poker face to speak of.)
“Do you want to get in line and ride it again?”
I'll never forget the sound of that emphatic No! We all cracked up, Willie included. And it was such a sweet moment—we'd done something crazy, and we'd survived to laugh about it. Willie and I were both scared of the ride, but we went on as a family. And indeed, our laughter has held us together through times of tears.
The memory of Busch Gardens lingered as I replied to Willie, “The roller-coaster! Wow. Were you scared?” I asked, my voice lilting. I was teasing him a little bit, but not really. I'm afraid of heights, I get dizzy easily, and I remember the Loch Ness Monster. This being the case, I tend to avoid roller-coasters as an adult. I was legitimately impressed that he'd gone on one. And I was even more impressed by his reply, which came at once: “No. I'm brave!”
Soon after, we exchanged our goodbyes and I-love-yous, and I hung up. But as I put down the phone, unexpected tears had come to my eyes. There was something about the way he'd said, “I'm brave,” that struck me right in the heart. Yes, you are brave, I thought. You are, my brother, and I'm glad that you know it to be true.
As you might have noticed, I kind of don't like keeping up with the crowd.
The laptop on which I'm typing this is the only laptop I've ever owned. I bought it in 2010. For the previous 22 years, I'd used exclusively desktops.
As Emily is fond of reminding me, I got my first cell phone in 2005. Until then, phones for me were all landlines.
Heck, I was still adjusting to Microsoft Word, which I only adopted in 2004. Until then, I'd been using WordPerfect since high school—that is, for quite a number of years.
Getting back to cell phones, once I got one I stuck with the basic kind—now known as “feature phones” or “flip phones”—until last year when we finally got smartphones.
We Aspies tend not to like change. Much more commonly than average, we like to stay in our comfort zones.
But now, I'm toting around a Droid Pro, snapping pictures, making video clips and emailing and uploading them like there's no tomorrow. For example, just a few days ago I snapped a pic of a car in front of us with very interesting bumper stickers. And emailed it to myself on the spot ... maybe a bit redundant, as I also have automatic Camera Upload with Dropbox so pretty much the moment I clicked the “shutter” that photo was out in my own protected corner of cyberspace. (Emily, who was driving us, didn't want a copy.)
“Is there an app for that?” I've got two smartphone office suite applications, one paid and one free; the jury's still out on which is better. I've got an app for finding the nearest Five Guys. Just a few hours before writing this, I got an app for converting pictures I take with my Pro into PDFs—great for things like receipts, signed contracts and other things you want to preserve on the fly.
I've got Google Maps, which is great for getting directions if you get lost. I've got an app that tells me in real time how busy the processor is and how much (or little) RAM the phone has available, and how much data it's receiving or sending.
And oh yes, I have one to (try to) control my battery hemophilia!
So now I'm looking ahead to the holidays, close enough to the end of our two-year contract so we can upgrade our smartphones at a subsidized cost. I'm almost drooling over the Droid Razr Maxx myself, though I might get the Razr HD instead.
All this staying current isn't easy—especially for someone who struggles with change—but these days it's a must. Especially if I'm having a kid soon who's going to live and breathe mobile tech in a few years—not to mention the kid's friends' parents, most of whom will likely be significantly younger than I am. To paraphrase the old song, keeping up is hard to do. But if it's something you're interested in enough, it can be fun!
Two days before our 19-year-old son Mickey leaves for sleep away camp, he asks to get a haircut.
No big deal, right? But 15 years ago this would have been unthinkable.
Back then, the barbershop was the scene of some of our worst parenting moments. By 8:00 in the morning of the Dreaded Haircut Day, my husband Marc would already be muttering, “I need a scotch before I can do this”—and he doesn’t even drink scotch. Bracing himself in the barber chair, Marc would clench Mickey in a bear hug and scissor-lock him with his legs. Mickey would flail frantically, headbutting his father and screaming like someone undergoing surgery without anesthesia. Customers gawked. One old man snarled, “Rotten spoiled brat.” Marc sweated through his shirt. When the barber declared he was done, I’d take Mickey into my arms. Sobbing and spent, he’d collapse against my shoulder; smearing us both with snot and hair. We tipped big. Very big.
Unable to face a repeat performance, we’d let long months go between haircuts. Mickey’s great-uncle Jack liked to tease him. “You look like a girl, buddy!” he’d say. Some days when we’d walk by that barbershop on our way to the deli, I could swear that as soon as the barbers saw us passing, they’d quickly pull down the white shade in the window that said “Closed for Lunch.”
But today when we enter the barbershop Mickey sings out a cheery “Hi Dom!” as he plops into the chair. Dom drapes him in a maroon cape, and picks up a shaver. A screen splits in my head: I can still picture that terrified little boy, even as I watch my son, nearly a man, sitting solemnly watching his reflection in the mirror.
I wait quietly, soaking in the sounds of barbershop banter, the sports talk, the sharing of summer plans. It is all so completely ordinary. A radio is tuned to a Lite FM station; the song playing is Journey’s “Don’t Stop Believin'.” I reflect how anyone who’d seen my son all those years ago would never have believed that Mickey would one day request—insist—we take him for a haircut. Yet here we are.
“How’s this?” Dom asks. I stand beside Mickey and glance down; the cape is feathered in a field of light brown hairs, as covered as a forest floor.
“Let’s take it down a bit more,” I suggest. “Is that ok with you, Mick?”
“Yeah, Mom,” he says.
I remember how we used to sneak into his bedroom at night with a pair of shears to give him a trim as he slept. I think of the time he was 5 and we took him to a local performance by the Paperbag Players; we hadn’t known that they were going to perform a new skit called the "The Horrible, Horrendous, Hideous Haircut." “NO!” Mickey shrieked, and every head in the audience swiveled our way.
Nowadays, Autism Speaks Family Services division offers a haircutting training guide for families and stylists on how to make the experience more positive, but back then there was nothing. Fortunately, one of our behavioral therapists offered to tackle the challenge. Mickey was 7 years old. She took him to the next town over—too many negative associations with our local barber—where they simply practiced strolling by a barber shop. The following week, they stood in the doorway. Eventually they progressed to sitting in the waiting area, watching other people get haircuts; then having Mickey sit in the barber chair. Eventually they introduced the cape; the shaver; the scissors. It took months, but by the time Kathy was done, Mickey was able to—miracle of miracles!—tolerate a haircut.
“This feels better,” Mickey tells me. His hair is crew cut short; I can see scalp. I think he’s more handsome with a little more hair. But Mickey is happy with how he looks, and that’s all that matters.
“Thanks Dom,’ Mickey says softly. Dom dusts a brush with talcum powder, sweeps it across the back of Mickey‘s neck. Mickey stands, turns to me and asks, “Can I have a dollar?”
I give him a $20 bill. He hands it to Dom. “Keep the change,” he says breezily. A man of the world.
“Is Dom proud of me?” Mickey asks.
“Very proud,” I say. “You know what? We’re all very proud of you.”
This whole visit to the barbershop has lasted 15 minutes. But it took us years to get here.
What makes a vacation a vacation? For me it's all about doing nothing. It's about soaking up as much sun as SPF 30 and my umbrella will allow. It's about being on the beach and spending the entire day absorbed in a good book. And most importantly, it's about being with family without the day-to-day stresses of work and school and appointments and getting to various places on time. I love it when my only logistical requirement for the day is arriving on time for my dinner reservation. I have very vivid memories of going on vacation as a child, and being just as excited the night before we departed as I was on Christmas Eve. I LOVE vacation in that way today, and never look forward to returning to the routine of being at home.
I can't imagine anyone not feeling the same way as I do about vacation. Much less, that my own offspring don't feel the same way. I find it ironic that my children are saying the same things to me that my parents used to say to me: "Turn down that music," or "It's time to go back inside, we've been out here long enough." And my response to my children is the same as it was to my parents: the sigh and the rolling of the eyes as I turn down the radio, or "Just five more minutes" in response to the pleas to go inside.
Despite the fact that the love of the beach has apparently skipped a generation in my household, I really want my children to enjoy and appreciate their time away from the routine of home. I take heart in the fact that Cameron genuinely looks forward to being with his extended family. He's always asking about who will be at the beach when we are there. He checks to make sure that my sister and her family will be there, and asks how many days they will be with us. By far, the most important aspect of any trip to the beach for Cameron is spending time with his “PePop.” My father has the good fortune of living at the beach year round, and Cameron loves to spend time with him. With PePop, Cameron can escape the demands of being Cameron. There's no requirement to reciprocate conversation. There’s no monitoring of his diet. No little sister around, whose sole intent seems to be to annoy him. So, I guess for Cameron, being at PePop's house is like being on the beach for me. No worries, no hurries, just a sense of calm and freedom.
As we see this year's summer vacation draw to a close, I feel we are all very satisfied in that it was a vacation well spent. We've all survived the nine-hour car ride that really takes 11 hours in traffic, and are actually excited to be home again. I have spent enough time beachside, and Cameron has spent enough time with his grandfather, and everyone's batteries are fully recharged. It seems even though we have very different ideas on how to spend a perfect vacation, we've both spent a perfectly wonderful time together and gotten exactly what we needed from the break.
“You are growing up so fast Kerry!”
The first time anyone ever told me that was when I was in third grade. It was one of the aides in my class. Between now and then I’ve probably heard this ad nauseum. You see, I always was afraid of growing up. Being an adult now is such a scary thought but probably what’s scarier than that is losing my identity.
You see autism has become a part of my identity. I am no longer the “kid with autism” but “autistic” instead. (From time to time, though, I tend to flip-flop between the wording in my writing without even realizing.) This is an interesting topic that has been spreading through the autism community. The more I seem to engage people about my self-advocacy the more I hear strangers say things such as “I would have never know you had autism!” or “Kerry, it’s so great how far you came from where you were before.” The whole topic of “Outgrowing Autism” and “Coming of Age with Autism” is something many adults will face within the next decade.
A big concern is that if more people believe that autism can be “outgrown,” then autistic adults could lose self-advocacy opportunities. Most of my autistic tendencies are things that a random person off the street wouldn’t see. I’ve had people come up to me in the past who have asked if I was misdiagnosed or asked how I could help consult when I didn’t show any “obvious characteristics.”
These types of individuals haven’t seen my struggles growing up, though. Being nonverbal till I was 2 ½, being unable to pronounce different letters, having dysgraphia, fine and gross motor skill difficulties, sensory integration dysfunction—you name it that was me. There are many individuals on the other end that see me now and say that I give them “hope” though and ask me questions based on my experiences from there to now. This is where we need to steer our future because the fact is that the popular image in the autism community right now is with kids in their early childhood. It’s that simple and this is part of the reason.
Don’t get me wrong though, early intervention is key. But we also can’t forget what happens when our kids grow up. We can’t assume some will outgrow autism because, as I mentioned above, autism is a part of who you are. We must be prepared to help each and every adult if need be to avoid the possibility of someone slipping through the cracks.
The main focus of what we hear about in the autism community today is on early intervention and services for children and families. With the staggering rise in the rates for children with autism I challenge us to look ahead 20 years and start to develop services and supports for them. An equally important group are the adults with autism who need services now. That is why my perspective as a young adult with autism is critical to the discussion. I can be the voice of the young adult with autism and by speaking out help define the issue. There can be no solution until we acknowledge there is a problem right now for autistic adults in areas of employment, insurance, housing, and supports.
So I may be an adult now but please understand that my name is Kerry and my identity continues to be molded and shaped by the steps I take as an individual.
Every year in early July, my thoughts turn to a friend lost too soon. My childhood friend Holly passed away in July 2006. Whenever I hear about how important it is for special needs siblings to forge connections with other siblings, her face comes to my memory. Yet I don't imagine her face as it was in the last months of her life: covered by makeup, frequently elusive. I remember that face as it was when we first met: freckled and painfully shy, yet often alight with interest.
Despite our shared experience of being older sisters to special needs younger brothers and our natural affinity for each other's company, Holly and I grew apart. After years of close friendship, we chose different paths. Perhaps, however, it's more accurate to stay that we selected different disguises. As we made the transition from middle school to high school, I chose to play the role of “the quiet girl,” the one who overachieved scholastically to overcompensate for feelings of insecurity. I strove to be the best while, simultaneously, trying to stay invisible. Case in point: As a young teenager, I kept a calendar outlining the outfits I wore to school each day (because heaven forbid that I should repeat a clothing ensemble more than once every three to four weeks). It seems silly now, but the fact is that I was terrified of being noticed. Being noticed was risky. Being noticed meant stepping out from behind the wall of invisibility I'd cultivated so carefully. The closest I came to rebellion was the night that I tiptoed into my closet at 4:00 a.m. … to finish up some homework that I'd claimed to have completed the night before. (And yes, I felt terrible—and was punished appropriately for telling a lie.) Sneaking around for the purpose of doing homework, that was me as a teenager.
Holly did the opposite; she showcased her subversive, contrarian side. Though she had a brilliant and creative mind, she was unmotivated by school work, and generally unconcerned with scholastic achievement. She was more interested in taking risks and getting noticed. Though I'd see occasional flashes of the shy, reticent pre-teen I'd originally befriended, Holly's usual teenage demeanor evolved into one of audacity and wildness. While I dressed to fit in with my peers, Holly dressed to stand out from the crowd. She wore gigantic heels, eclectic, Goth-style clothes, and bold makeup on a daily basis. To this day, whenever I see Lady Gaga in one of her famously wild getups, I think to myself, “I bet Holly would have worn that. In fact, I bet she did.” In high school, we maintained a friendly connection and talked sporadically, but the differences in our public personas both indicated and increased our sense of separation from one another. When we'd exchange Christmas cards and gifts, I'd feel the loss of our former friendship; it was a faint foreboding of a much greater loss to come. Holly chose to take dangerous risks, and ultimately, the cost of that choice was her life.
From the perspective of years, I can see the ways in which our distinct disguises were shaped by our experience of being sisters to young men with special needs. I elected invisibility and perfectionism in part because, as Willie's sister, I was excellent at apologizing and deflecting attention away from “strange” behavior. Holly elected edginess in part, I believe, as a response to her brother's needs. More than once, I heard her use her bold defiance to defend him against bully's taunts.
When Willie began struggling with self-injurious behavior and aggression, I'd bury myself in homework and sports, squelching my anxiety in activity. Perhaps I failed Holly with my striving; perhaps she let me down by disappearing into drugs when I needed her most. But the last time I saw her, I felt nothing of failure, only a sense of compassionate connection. Despite our differences, we seemed to stand in solidarity with one another. And that feeling remains with me now—a specific grace that I hold to whenever grief draws near.
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
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