Either way, I knew I was going to cry.
My son answered the phone, covered the mouthpiece, and whispered the admission director’s name. As I wheeled closer to take it from his hands, my emotions bubbled up, filling my eyes with all my heart contained.
Whether the answer was “yes” or “no,” I knew I was going to cry.
I took a deep breath.
She began with an apology. “We’re sorry it took so long to get back to you.”
The journey began months ago, when Madison began to struggle at school. Limited in verbal expression, she relies on structure, routine, and predictability to function at her best. “Schedule please,” is by far her most repeated phrase as she continually seeks to order her world.
But her world had become too complex for her to order. She needed my help.
Although she had flourished in her current school, her behaviors had begun to escalate, courtesy of rising hormones, we thought. We soon realized that the program no longer met her needs. The search for a new placement began.
“Madison has been accepted …” I heard the voice say. I slumped forward in my wheelchair, chin to chest, palm to head, and pressed the phone hard into my ear.
“Thank you,” was all I could say.
That phone call changed my daughter’s life six years ago.
Last week, another phone call changed it again; we learned Madison’s adult placement had been finalized.
Again, I cried.
A search that began two years ago was finally complete—at least for now. In the world of autism, I’ve learned that nothing is ever fully final—there are just too many variables.
Meanwhile, my other children prepare for their own life-changing milestones.
My son graduates from high school, heading 3000 miles away to college.
My daughter is getting married.
And once more, emotionally-charged expectations fill my heart.
As parents of children with autism, I think we are entitled to feel different and special in the extraordinary effort it takes to parent their unique and ever-changing needs. We continually seek resources while at the same time assessing their abilities and capacities to learn and grow.
But, if we’re honest, isn’t it the same set of skills required for our other children?
Granted, that journey is less lonely and perhaps filled with more options.
But in the end, they, too, have changing variables and need our help as they seek to order their lives.
We struggle as they struggle—and celebrate as they celebrate.
We take deep breaths for them and with them.
The same, but different.
It seems I go through the same existential crisis year after year: To ESY or not to ESY? Cameron hates the idea of "Summer School," even if you dress it up with an acronym like ESY. And I can't say that I blame him. On the one hand, there is a lot to be said for the structure and continuation of support services provided through the Extended School Year. Not to mention, there's no direct out-of-pocket expense involved. But on the other hand, by design, there's no remediation of skills in ESY. The intent is to keep the status quo, so nothing lost, but nothing gained either. And who wants to be on a school bus by 7:00 a.m. all summer? So, it is with some trepidation that I've decided to say no to ESY for Cameron this year, and have challenged myself to establish an equally structured summer for him, and perhaps even more meaningful. And thus, the creation of MASSA: Mom's Awesome Summer School Alternative.
The key to MASSA's success is making sure Cameron has something to do. I'm still holding out hope that a paid employment opportunity will present itself, but until then, Cameron's manager at Angelico Pizzeria has agreed to allow Cameron to continue indefinitely. However, a couple of hours of washing dishes each day is not enough to fill out a summer. In last week's column, I mentioned hiring a social mentor for Cameron. This is an aspect of MASSA that I'm most excited about. This person will be charged with overseeing Cameron's interactions with the community in general. If they go to a restaurant, I want to make sure Cameron leaves an appropriate tip. If they agree to meet at a museum, Cameron should arrive on time, or call to say when he'll arrive. I'm hoping Cameron's social mentor might even help Cameron find a volunteer opportunity that will earn him credit towards his community service graduation requirement. And perhaps the social mentor will help Cameron approach potential employers about available opportunities. There are endless opportunities in which a social mentor could help Cameron become more independent, all crammed into about four to six hours a week. And, it's far more appropriate for Cameron to do all these things with a hip, young, pretty social mentor, as opposed to his mommy!
You may now be asking, "Where can I find a social mentor for my young person?" Well, this is one instance in which I cannot recommend my dear friend Google. This is situation that calls for a dash of creativity and a fair amount of parental intuition. Cameron's social mentor worked with him last year at the Smithsonian All-Access Camp, and when I spoke with her at the camp's conclusion, I was blown away by the insight she had developed into Cameron in such a short time. I've learned from years of experience that when you find someone who works well with your child, you keep in touch with that person. And as I've learned from firsthand experience, people who work in the field of supporting students with disabilities are not wealthy from their incomes. Therefore, many are open to side employment opportunities. If you're looking for a social mentor, think of someone with whom your child has worked with before and with whom you found it easy to communicate. Don't stop the search with past teachers. Consider young adult relatives that have had a good relationship with your child, provide a little guidance for activities, and send them off into the world together. If the list of potential mentors is still empty, look into nearby universities that offer a special education degree program. Universities often have a job posting website that the public has access to. This is where my friend Google can come in handy, in as much as finding a place to post the job description and in researching any applicants. It's relatively easy to run a background check on anyone these days.
The decision to decline ESY services for Cameron in lieu of MASSA did have some financial strings attached. ESY is paid for by the school system, and by declining I'm left paying for, among other things, the social mentor's time and the cost of any activities she and Cameron schedule. But then I considered the expense of sending my 9-year-old daughter to two weeks of the science camp she asked to attend, and I realize how valuable a proposition it is to hire a social mentor. Of course, you'll have to check back in September to see how successful the inaugural year of MASSA was, but I suspect the valuation with be "priceless."
You may have read my column some time ago, about how one of Cody’s favorite pastimes is going antique shopping. We had not gotten a chance to do that for a while but over the holiday weekend we were afforded that opportunity. And this time Cody surprised me.
The morning started out pretty much status quo. I went to wake Cody up. I said, “Cody, would you like to go antiquing or should we just stay home?” I felt this tremendous rush of air then all of the sudden, he was no longer in horizontal mode, but sitting at the kitchen table asking for his coffee. When I gave it to him, he chugged it down, inhaled his breakfast, and then hurried to the bathroom to brush his teeth and get dressed. Finally, we laced up the power shopping shoes and we were off.
One of our favorite places to go is a mid-sized town about an hour away where antique shops are everywhere. When we go there it is safe to say that we will be there for the duration of the day and sometimes into the evening.
We arrived at our first store. Cody was giggly and dancing with excitement. We entered the building and within no more than a few short minutes our first bargain was found. Then we were all giggly and dancing with excitement.
While Bill and I shopped, Cody did his normal routine of pacing up and down the aisles, checking everything out and grinning from ear to ear. Seldom does he ever touch anything. Sometimes he will stop and look at things—poring over them like a mad archeologist who just discovered some new piece of history from a time long past. But rarely does he ever ask to buy anything. Well, today he did!
He spotted a small puzzle that was made somewhat on the same principle as a Rubik’s Cube. When configured properly, a picture of Batman appeared. This is what Cody wanted to buy. He was adamant about it. But he didn’t want to buy it for himself. He wanted to give it to his Occupational Tech, Stephen. He knows Stephen loves to collect Batman memorabilia.
This action was somewhat of an epiphany to me. It dawned on me that while my son has always had a loving soul, he also has the ability to think of others. What they might like. Even someone like Stephen, who has only been a part of Cody’s life for a few short months.
Stephen and Bill had discussed Stephen’s passion for collecting Batman comic books about a week earlier. Cody was present at the time but did not participate in the conversation and made no mention of it later. So when he made his desire to buy this item for Stephen known to us, it was clear how much he is aware of the world around him—that he isn’t just oblivious to events that take place in spite of how it may appear to others. He really pays attention to things that others may consider insignificant at the time.
The very fact that he collected and stored this information for use at a later date is very telling of his level of awareness and how much his thought processes can and do work like that of a loving, caring neurotypical peer who will put another before himself. I hesitate to say all other peers, because there is so much evidence that suggests many young people around the same age as my son have a much more selfish mentality. Needless to say, I consider myself most blessed that Cody isn’t like that. And I am extremely proud of him!
Cody gave Stephen the puzzle yesterday. Stephen was also in awe of Cody’s display of thoughtfulness. He didn’t care about the fact the puzzle cost all of a quarter. He was delighted that he was thought of outside of the realms of his job and that it all came from a two-minute conversation that Cody simply overheard over a week ago.
Cody has taught us all a lesson over these last few days. Simply because a person lacks what is perceived by society as the so-called normal social behaviors it doesn’t mean that person lacks the ability to love and think of what might warm the heart of another. Yet so often this misguided judgment is passed upon them. Perhaps this quote (commonly credited to Albert Einstein) applies here:
“Everybody is a genius. But if you judge a fish by its ability to climb a tree it will live its whole life believing that it is stupid."
“I try to make a point to be thankful for the things we do have,” she said. “You can get so fixated on what's difficult that you can lose sight of what's good.” I nodded vigorously. Even though she couldn't see me, even though we were only talking on the phone, I couldn't help myself. I'd been talking with Dilshad D. Ali for about thirty minutes, but I'd felt from the first that I'd found a kindred spirit.
Dilshad D. Ali's son is a preteen on the spectrum who struggles with self-injurious behavior (SIB). I'd reached out with a request to interview Dilshad as background research while writing an article about SIB. It was a piece I both loved and hated; a piece that I needed to write and hated to have to. I'd finished a first draft, but I needed more personal input from families. Though I put out queries, I kept striking out. SIB is a difficult subject, and I wasn't surprised when the response to my request was nil. Fortunately, I'd read an article by Dilshad on autism, ritual, and faith that spoke both to my heart and to my need to interview parents on their experiences with SIB. The vulnerability with which she shared her experience gave me hope that she'd accept my interview request, and as such, I was determined to reach out to her. Through a friend of a friend, I was able to get in touch and ultimately set up an interview.
And the beautiful thing about the interview was that, though I set it up in hopes that it would make for a better and more engaging article for others to read, the interview helped me most of all. I barely needed to glance at my notes; question flowed seamlessly into question, and Dilshad's responses took the form of short stories, snippets of her family life. Listening, I felt as though the experience was akin to looking in a mirror; as she talked, I saw how our experiences reflected one another's. She described the tests her son had undergone, and outlined all the possible causes the support team had considered for the SIB … and it was so familiar, because they were the same things that my parents have done for Willie.
Her words traversed the same terrain that our family has covered. She even used some of the same phraseology I've employed to describe Willie's outbursts, such as, “[He goes from] zero to 60 in no time,” and, “It's like Jekyll and Hyde.” She was speaking my language, and I felt waves of relief. My family and I were not alone. We weren't crazy. We weren't the only ones flummoxed, confused, and wondering how and when the SIB would ever stop, how and when things would ever come out right.
Further, we weren't the only ones struggling to keep our faith in a time of trial. As Dilshad wrote, “When you’re in the throes of helping your severely autistic son live his life, when your prayers turn from hopes of recovery and independence to just wanting him to be happy and at peace, when you beseech God time after time and still see your son suffering, when you see your entire family affected by one child’s disability, faith and trust can grow tenuous.”
Ironically enough, reading those words helped me to regain faith; her transparency helped to lift the burden of isolation I'd felt. As we talked on the phone, we commiserated and we laughed; we held sorrow and we held out hope. And in the end, she said what I'd known to be true all along: That love for her son was what kept her and her family going. Love that let go of expectations and just kept marching on, day in and day out. And as she said it, I felt how good it was that we were talking, we who were walking the same uncertain, winding road together. Somehow, I couldn't help but hope that it would lead to a beautiful place.
Now that I have graduated from college, my parents are again emphasizing the importance of life skills with me. They have explained that learning life skills also encompasses learning how to take care of the property that surrounds our home. This is a very different experience for me since up until now my parents have worked on teaching me household and self-care life skills, and I never really gave much thought to outside chores. I have always been quite happy to stay inside with my books and computer.
So, this past week I have started a new chore: carrying the bags of seeds for my mother to the many feeders we have in our large yard and woods behind our house for the squirrels, birds, and chipmunks that come to feed. The woods takes up almost all of the interior space of the block we live on and our bird feeders receive a wide variety of plumaged visitors.
As the weekend approached, my father indicated that he would need my help to clean up the leaves, twigs, and other detritus that has collected in the woods. I have played in the woods a few times before, but I have never helped my dad take care of it. It turned out to be a very rewarding experience even though it did challenge me physically.
It was a bright sunny day when we ventured out and our main responsibility at first was raking up the leaves, sticks, and other materials in the back yard, placing them in a wheelbarrow, and wheeling them over to a large debris pile in the woods. My dad did most of the raking while I held a shovel to collect the leaves and then placed them in the wheelbarrow. This was a new experience for me since I have never used a shovel before, but I got the hang of it after a few minutes of practice. I also pushed the wheelbarrow to the pile and disposed of the leaves there—another new experience for me. My dad showed me how to shake the wheelbarrow back and forth so the leaves could be more efficiently distributed as they fell out into the pile. Making these trips could be tough because the path to the pile was up hill and was covered with leaves and large branches that blocked the path and almost tripped me up in some places, but my father taught me how to navigate through the woods to the pile. I think another reason I perceived the trips as difficult is because I usually did not pay attention to where I was stepping. It took a great deal of concentration on my part to learn how to navigate the path, push the wheelbarrow without tipping it over, and avoid branches and stumps. My dad and I shared the responsibility of pushing the wheelbarrow, each of us alternating after four trips each.
This process exhausted me because I have weak muscle tone throughout my body, so my dad let me rest for short periods. During my rest periods, I took in the beauty and sounds of the woods, things which I had not really noticed in too much detail before. The day went on this way as we moved from the back yard to further up into the woods, cleaning the woods and then resting my body so that I could continue. By the time I told my dad I was much too tired to continue, about four hours had passed. My dad worked on as I went in to rest.
Being with my father as we took on this task turned out to be much more fun and invigorating than I thought it would be. My father’s company was very enjoyable as was seeing all of the animals who scampered out of our way as we worked, and the pleasant weather was a very nice fringe benefit. We did not complete the entire woods, but I look forward to working with my father in the coming weekends to do so. I also now know that I can, with the proper guidance and attitude, participate in projects that are both physically and mentally challenging for me. Another benefit of a good day’s work is to be able to look outside and see what my father and I accomplished—the start of a very nice looking yard and woods.
In two weeks, my son will be graduating from high school. I don’t know that he will read this, but if he chooses to I would like to take this opportunity to pester him—and his fellow Aspies who are moving into perhaps the biggest transition of their lives to date—the following “words of wisdom.” And Michael, if you cannot bring yourself to heed your mother’s well-intended advice, perhaps you could pretend that it is coming from someone else! That always works for me, because like my son, I truly do not do well in many situations where I feel as though others do not think I am capable of making wise decisions without outside input. On the flip side, I feel compelled to offer such advice, especially to my children and students, on any number of occasions, so bear with me.
First, the fact that you are on the brink of being considered, legally and otherwise, an adult does not mean that you should expect yourself to make well-thought out adult choices all the time. Being a grown up does NOT mean that your days of making mistakes are over. As a matter of fact, welcome to the world of a whole new realm of mistakes you can—and will—make. This is expected, and making mistakes is the only way we learn. When you stop making mistakes, it means you’re dead! As long as you take those mistakes and use the lessons learned to your advantage, then it’s all good. No one expects perfection even though you are all grown up. Expecting perfection of yourself will bring nothing but heartache, frustration and despair. You will certainly experience enough of that with what the adult world will throw at you without bringing it on yourself.
Next, on the flip side, there may very well be times when it is tempting to use your “disability” as an excuse for not stretching yourself beyond your comfort zone. Those will be times when honest self-reflection and perhaps the guidance of others (yes, that means help!) could serve you well. You cannot allow yourself to fear failure to the point where it leaves you afraid to try in the first place. After my diagnosis, I definitely went through a period of time where I “let myself off the hook,” so to speak, when it came to trying new things—or revisiting old things—that were too hard, or too stressful, because I finally understood the reasons behind my fears. Ultimately, that way of living is not really living, though. While we all need to let ourselves off the hook once in a while, do not fall into the trap of using Asperger’s as a reason for not leaving your comfort zone. Knowing the young man you are today, I do not see you doing that, but one never knows what the future can bring, and there will be times where that would be the easiest thing to do—so don’t do it!
And finally, perhaps the most important lesson I have come to recognize may be the key to all success … please, please do not be afraid to recognize that you need help, and to reach out for that help when you need it. If your Asperger’s plays out the way mine did for so many years, it will be the easiest thing in the world to tell yourself that you are completely self-sufficient, you don’t need other people and involving other people just leads to confusion, pain and fear. There is something in the way we are wired that brings us to that default line of reasoning, I am convinced of it. I am equally convinced that we can change that wiring when we choose to—I watched you from the time you were not quite 3 years old as you became a fully engaged partner in the therapeutic interventions that enabled you to grow into the young man you are today—the young man you were meant to be. Trusting others is perhaps the downright scariest thing you will ever be asked to do, and reaching out for help means trusting others. But the payoff, my son, will be worth the risk. You can trust me, I promise!
I hope everyone is having an enjoyable Memorial Day Weekend. It certainly has been a memorable one for me. Cameron has been a wealth of developmental surprises lately. We have historically struggled mightily to inspire Cameron to find weekend activities beyond his computer. Yesterday, however, Cameron left the house before noon and didn't return until nearly 6:00 p.m. He filled his day in much the way a typical 17-year-old might.
Cameron had planned to go to a nearby Mexican restaurant for lunch. When he arrived, the restaurant was closed due to a power outage. But this did not deter Cameron in his pursuit of the perfect lunch. He hopped on the Metro towards his ultimate destination, Dave & Buster’s, stopping for lunch at T.G.I. Friday's along the way. The T.G.I. Fridays, while at the same Metro stop as Dave & Buster’s, was still a few blocks away. Cameron had not been to this particular location before, and yes, he even remembered to tip his waiter. After lunch, it was off to the mall, in search of a Hallmark store. Cameron wanted to get a jump on his Father's Day shopping. Once that was out of the way, it was finally time for Cameron's first solo trip to Dave & Buster’s. He dutifully brought his receipt home and asked about a fee listed there. He also dutifully went straight to his computer to record his transactions in the checkbook register spreadsheet I created for him.
At last testing, Cameron's full scale IQ came in at 68. That number has never really meant much to me, especially when it comes to reflecting Cameron's abilities. I think of Cameron's itinerary from yesterday as a far better indicator of Cameron's capabilities than any test results or IEP milestones. Cameron planned his day completely independently. He was exhausted when he arrived home, as it was quite warm yesterday, and there was a lot of walking involved. But the sense of accomplishment that oozed from him was surely worth the effort.
So how could it get better? Well, for starters, it would be great if he had a friend with whom he could go on theses adventures. I struggle with helping him find those friendship opportunities. Many of his classmates aren't quite up to the independent day on the town that Cameron thrives on. I know my son very well, and while I have an idea of the type of person that would NOT be a good friend candidate for him, I'm afraid identifying the type of person that IS a good candidate completely stumps me. As such, I've hired a social mentor of sorts to spend some time with Cameron this summer. This is a young person who worked with Cameron at the Smithsonian camp last summer, and seemed to completely get Cameron after just 2 short weeks. Maybe a little social prodding from someone other than mom will yield better results.
Another improvement on yesterday would be if Cameron made better eating choices. Working in a pizza restaurant has not been kind to Cameron's waist line. While he's picked up on some of my incessant nagging about nutrition, he tends to pick the easy things to adhere to, such as fresh fruit every day. Fresh vegetables, however, tend to be something he overlooks whenever he can get away with it. But when it comes down to it, I'll grant him the empty, abundant calories of fried chicken fingers, fries, and a Coke, in exchange for the pleasure in knowing he's growing into a quite capable young man.
Since Cody was very small it has been my dream to be at home with my son. But due to finances it hasn’t happened yet. But now a light at the end of the tunnel is appearing.
One of my favorite pastimes is woodworking. And over the years I have slowly but surely developed my skills and my stock pile of tools. So now we are gearing up to put a woodworking shop in our barn.
I used to sit and dream of a job where I’d be close to my son … stop what I was doing and take him out for lunch … have the freedom to work with him on things during the day and work in the shop at night. And now it’s starting to come together and I’m thrilled.
Being able to work on life skills with Cody has always been very important to me as it is to any mother who takes pride in her child. But when moms have to work, it can be challenging at best.
I have often wondered where Cody would be now if I had been able to be at home with him, especially during those early years. After all who knows my son better than me? Who knows his every quirk, his every habit, all his favorite things and all the things he despises (such as math) and how to work around that better than I do?
Cody and his occupational tech, Stephen, work very well together. However, Cody learned that Stephen would be gone for a week this month and then in June, he will be leaving for almost a month to do some volunteer work abroad. Cody became very anxious about Stephen being gone. He would have to become acclimated to a brand new person in Stephen’s place and that’s not something Cody relishes at all. He doesn’t mind meeting new people, but when it comes to spending time with them, taking and adhering to directives from them, that’s another story.
This week was Stephen’s week to be gone and Zach has been Stephen’s temporary replacement. And though Zach has been doing well, Cody’s anxiety has still been an issue. When he gets nervous, he becomes grumpy and agitated. He can even be oppositional and when he gets like that, it takes someone who knows him to settle him down. But the thing that bothers me most about Cody’s anxiety is his nervous stomach. If he is anxious, his food doesn’t stay in his stomach, so his nutrition intake is diminished, greatly. That makes me anxious!
I’ve been fortunate that I’ve had most of this week off from work. So Cody’s anxiety level has only been slightly elevated, because he knows I’m here. And if Zach ran into any problems, I was here to straighten them out quickly. A couple of nights ago, Cody was lamenting about anything and everything he could. And Bill called him a Norwegian grumpy ole troll. Cody fought to contain his laughter but couldn’t. He grinned and laughed and though he was slightly irritated that Bill made him laugh, he was fine for the rest of the night. But how is it going to be when Stephen leaves for a month in June? Will I be able to be around then? Will Zach be Stephen’s replacement then? Or will he have someone completely new again?
I know that Cody needs to learn to relate to new people he meets without becoming nervous and irritable. I know he needs to lose those kinds of social inhibitions. I know he needs to learn and adapt to new situations with ease to be able to function and have a happy life in this ever-changing world. But it is still going to take more time. It’s still going to be a learning process for him. If I can only be around to help him accomplish these things, it will mean less stress for both him and me.
I couldn't believe it, but even so, there it was: He was holding my hand. The large group had grasped hands with one another for the prayer, and he hadn't dropped my hand since. We were sitting on the living room couch at one of the L'Arche homes in Washington, DC at a regular Tuesday prayer night—as ordinary a setting as one could imagine. And yet in that moment it felt anything but ordinary.
To offer a bit of backstory: My friend—let’s call him “Leo”—is not a big fan of physical contact. I've known him for five years now, and I was his housemate for two years and one-to-one personal accompanier for one … and yet I can count the number of times he's reached out for me on one hand. Yet for reasons unknown to me, he held on to my hand for about a minute after the prayer had ended. I sat, surprised, happy.
It made me think of Willie, and how much like Leo he can be when it comes to touch. Willie will hug me if I come up to hug him; he'll hold hands and dance with me too. Yet, as with Leo, it's always me reaching out to him, never the other way around. When we were younger, I think I knew intuitively that physical proximity, rather than touch itself, was the way to go to be close with Willie. We'd race around the house, huddle in a heap together on the staircase, nap side by side.
In the last decade, though, touch has been fraught with tension, because touch so often comes in the context of a meltdown. When Willie gets upset, he lashes out physically. Yet even so, one of the only semi-effective ways to help Willie calm down involves touch in the form of physical pressure. My parents will ask Willie, “Do you want pressure?” when he rolls himself up in our living room rug, and he'll almost always say, “Yes.” Perhaps that calming pressure is both physically necessary and emotionally stabilizing. It's a touch that he can control, specific to his needs.
During the worst of Willie's aggression, I used to feel afraid to sleep in the room next to his. It was a terrible feeling, that sense of being physically afraid of my sibling, my brother. When I wrote about it for a college essay, I said, “At night, I feel as vulnerable as a blackbird in a field of snow.” In the course of his violent behavior, I'd lost something—the free, child-like sense of being at ease next to Willie. I'd lost the implicit assurance that, though we might tease and taunt each other, we were allies. It was something so basic that I didn't know I had until I lost it, and I wanted it back.
It took me years to accept the fact that I won't get it back, at least not in the same way as I had it before. We cannot go back. We cannot erase the challenges we've been through. We can, however, come out on the other side of them. I can choose not to be afraid of my brother, even though his behavior can be scary sometimes. Accepting what is, I can appreciate the ways in which we can be close: by praying for one another daily, keeping up with our weekly phone calls, and enjoying the occasional visits. They call it “keeping in touch” for a reason; though there may be miles between us, talking to Willie and writing about him and his experience has helped me to be close to him in a way that I wasn't before. When I was living in the same house as Willie and resenting him and his seemingly-crazy behavior, we were farther apart than we are now.
And so when I see Willie this weekend, I'll reach out to hug him, the way I always do. He'll hug me back for a fraction of a second, and then I'll let go. And for that fraction of a second, all will be well.
I'm traveling ... again, but this time the whole family is with me. I always end up learning much about myself and my other family members when we spend so much uninterrupted time together. (The good news is we're all still speaking to each other.) When I discover something new about Cameron, it never ceases to profoundly surprise me.
The first thing I discovered (again) on this trip is that Cameron does not get jet lag. It doesn't matter if we go six hours to the east to Europe or three hours west to California. All that's needed for Cameron to adjust to local time is for him to set his watch, and he's done. He wants to eat at appropriate times and he falls asleep at appropriate times. A few summers back, we went to visit my in-laws in France, and Cameron was having breakfast at 7:30 from the first morning we arrived. The rest of us struggled to get out of bed before noon. This trip has been the same thing with regards to Cameron's schedule. It's as if Cameron has no internal clock. I find that fascinating.
Another discovery I've made on this trip is the magic of water. I remember reading one of those chain emails with a list of parenting tips, in which one of the tips was: "If children are unhappy, put them in water." I was reminded of that tip as I watched Cameron and his sister play in the hotel pool yesterday afternoon. We had spent the majority of the day in the car together, and barely two words were exchanged between them. But watching them in the pool together was like seeing two completely different children. And it went on for more than an hour. Usually exchanges between the two are short-lived, like a quick chase around the dining room table while getting ready for dinner. But they spent an hour in the water together yesterday, totally engaged with one another. (And the best part was I wasn't constantly being begged by my daughter to come in the pool with her.) Cameron also spent some time in the hot tub yesterday, which seemed to make conversation easier for him. He and I discussed our trip so far, and I overheard him talking with other guests that joined him in the hot tub. I'm seriously considering getting one at home, as they are much quieter than that creaky old swing he uses to release energy. Maybe this is the age appropriate solution I've been looking for!
Last night, Cameron actually gave me my first taste of what it's like to have a teenager. When we came home from dinner, he decided to take a walk around the hotel. He's done this several times since we've been here, so it wasn't anything out of the ordinary. But when 9:00 rolled around, I started to get a bit antsy. (I realize that 9:00 is when most 17-year-olds go out for the evening, but Cameron's bedtime routine usually starts at that time.) I joked to my husband, "Maybe he has crashed a wedding in the hotel." Without being asked, my husband went out to find Cameron, and returned within two minutes. I guess Cameron is about over all this togetherness time and needed some time alone. But he hasn't complained one bit, and I am very grateful for his "roll with the punches" attitude. I realize that he is unique in that regard. Actually, Cameron is unique in any regard. That must be why I so enjoy the adventure of being his mom. (Most of the time.)
Today is my brother Willie's long-awaited 25th birthday. Since I awaken a bit later than anticipated, I race to call him before his bus arrives to take him in to work. As it turns out, I needn't have hurried; Willie is home with a bad cold today. When my dad hands me the phone, I say, “Hi Willie, it's Caroline!”
For once, he doesn't mirror my chipper tone; instead, he replies sleepily, “Hi, Caroline.” His voice is deeper than I've ever heard it, a combination of illness and maturity that catches me off-guard.
We chat for a few minutes, and I ask, “Would you like for me to sing to you?”
“Yes!” he says, with just a hint of enthusiasm.
Me being me, I latch on to that glimmer of gold and run with it. “All right! Happy Birthdayyyy to youuuuu...” I ham it up a bit, hoping it will cheer him. It's hard being sick on your birthday.
As Willie and I say our goodbyes, I'm thinking about the talk I'll be giving tonight, entitled, “Not A Burden, But A Privilege: Ministry Alongside People With Special Needs.” It's hard to know what to expect; there might be five people in the audience, and there might be 50. Despite the outline I've made and the readings I've prepared, I'm nervous. What if nobody shows up at all? What if a ton of people do show up, and then everything goes wrong? What if I botch it somehow? It's ironic, really—here I am, preparing a talk about the art of acceptance and inclusion, about how we need to welcome those who communicate and think differently, and I'm having performance anxiety. It's enough to make me laugh.
With laughter comes clarity, and I'm reminded of a poignant moment in my recent interview with Keri Bowers, who produced the documentary, “Normal People Scare Me” along with her son on the spectrum, Taylor Cross. When I asked Keri if there were ways in which “normal” people could make themselves less scary to individuals on the spectrum, she mentioned a staring exercise. When she speaks, she asks audience members to stare into a stranger's eyes for a full minute. As Keri notes, “Most find it uncomfortable … [And then] I say, 'Imagine if your minute was never up. Imagine if every day of your life, you had to be in a situation where the world is coming at you and you can't just look away.' I try to help people feel what special needs feel like, what autism feels like. Remember a situation where you felt vulnerable or unsure of yourself, a time when you couldn't communicate and got frustrated … and see [a person with autism] as a person who experiences that all the time.”
As Keri spoke the words, “Imagine if your minute was never up,” I felt as though I'd had the wind knocked out of me. Her statement had a ring of truth, and it gave me a new perspective on how social interaction might feel for Willie. With this statement held firmly in mind, I think to myself, You have to just feel the discomfort, the nerves, the not-knowing. You have to accept it, and be willing to wait it out. For Willie, on his birthday, that's what you have to do.
And I wonder if Willie ever wakes up nervous about the day before him. Does he feel anxious at the thought that he might have a meltdown? If his rages are in fact as unpredictable and sudden as they appear to be, they might take him by surprise. If that is the case, it must take tremendous strength for him to wake up each day and try to move through a routine, not knowing when or if that routine might be broken by a destructive force from within.
Willie and I love our routines. We love knowing what comes next. And the terrible truth of life is that we never know. Anything can happen, and often does. This uncertainty has the power to paralyze or free us, to lead us to despair or hope. It's our choice. And today, on my brother's 25th birthday, I will choose the latter.
At 11:21 a.m. on Tuesday, May 14, 2012, I completed the final test for the last class of my final semester of college. I will be graduating later this week. Now that I have more time available to me, I have been reflecting on all of the lessons I have learned over the past 2 1/2 years of my collegiate experience. I have learned a lot about different subjects from psychology to history, from world religions to forensic science, from nature to technology. Some of the most important lessons I have learned, however, have been the life lessons which have helped me throughout this whole experience and will surely help me even more in the years to come.
I have learned the value of perseverance. There were many times when I have wanted to give up in the middle of particularly tough assignments. The task could be grueling in itself—it may have had a complicated set of directions, or things beyond my control such as a faulty Wi-Fi connection or time constraints could be serving as obstacles-but my feelings would be the same throughout. I wanted to drop everything and engage in simpler, more fun pursuits. Despite my inner protests, I would continue to work my way through the assignment. I kept reminding myself that completing the work would be better for me in the long run and that any agony I was feeling at the moment would lead to a greater reward later. I have had to remind myself of this lesson again and again over the past few years, but I feel it is worth repeating all the same.
Resourcefulness and problem solving have been issues that I have had to work on in my daily struggles as a college student. On some occasions, I looked desperately through my textbooks and lecture notes to find key pieces of information I needed. In my single-mindedness, I would frequently overlook one particular section of my textbook or one note which I did not think could contain the fact or theory I needed in order to get the correct answer. After I turned in the work and it was graded, I would look back through my textbooks and notes to see where the information I had missed was located. It would usually be in a place I had overlooked in my rush, and I would often think to myself, “That was the most obvious place! Your narrow way of thinking really cost you there!” I tried to not beat myself up too much over such mistakes so that I could move on and complete the next assignment, but these errors could weigh heavily on my mind for weeks and sometimes even months afterward. I really had to concentrate as each assignment came up, and I tried to not make the same mistake again and again. I worked very hard to remain calm so that I could think my way through all my assignments, and there were times that I was very successful and other times when I fell short. This is something that I know I will have to continue to work on as I move forward in my life.
Most of all, I feel that the greatest life lesson I have learned during my college experience, one which I have learned to recognize in many other areas of my life, is best summarized by the old song lyric (with full acknowledgments given to John, Paul, George, and Ringo), “I get by with a little help from my friends.” My professors and fellow students have been instrumental in helping me get through a lot of my classes. In addition to overseeing the courses, my professors often subtly showed me different ideas that helped me to see the pieces of wisdom that they were trying to impart. I got some of these ideas right away, while others took a little more time to figure out. Many of them taught their classes with an equal combination of seriousness and levity, occasionally throwing small jokes into their instructions or analyses of my work which sometimes annoyed me but often caused me to feel a little better after my work was completed. In online discussions, my fellow students frequently voiced opinions and alternative perspectives which helped me to understand the material I was reading in a different light. They made a tremendous impact on me as a student and as a person. I sometimes have very narrow views regarding many subjects, and I realized as I spoke with more and more people in my classes that people do have different opinions and ideas regarding the same subject matter. I learned that it is okay to accept the opinions of others and to recognize when they reveal information and perspectives which can add immensely to your own understanding of a given topic. I also learned that I am not always right nor do I always have to be right; I can now listen to and discuss others’ ideas.
Of course, I did learn a lot of information during my college years which I found interesting, but I have trouble recalling it sometimes. The lessons I have outlined above and many others like them will stay with me for the rest of my life. These are the kind of lessons that you cannot learn from a textbook or lab. You actually have to experience them to fully understand them.
When you have a kid on the autism spectrum, the first thing people often want to know is where he falls on that scale. And while I don’t tend to think of myself as easily offended by language, lately I have found myself getting rubbed the wrong way by a phrase which would probably not cause most people to bat an eye. In fact, I’m sure many parents out there would be grateful to have this describe their children: “High-Functioning”. So why, you may ask, am I feeling bristly over Cameron being described as “high-functioning”? Well, it’s hard to put into words, but since I get paid the big bucks to put things into words, I shall try. (Note to Editor: “Big Bucks” is a term of irony.)
As best I can tell, “high-functioning” is in the eye of the beholder. There is no official diagnosis of “high-functioning autism” to which diagnosticians refer. Though in my history of looking for support programs and potential schools for Cameron, I have frequently heard Cameron described as “too high-functioning.” I never take that as a complement. Instead I feel almost ashamed for taking up an administrator’s time with Cameron, when clearly there are many students far more deserving of service than he. I fully understand that Cameron’s place in the autism universe is not a bad place to be. There has not been a time when I’ve read one of Caroline McGraw’s columns and I haven’t considered myself lucky to not be facing the same issues her family faces. I fully appreciate and am proud of the fact that Cameron excels at independent living skills. He can budget his monthly allowance and track his bank account. He can go anywhere public transportation will take him relying on no more help than the app on his phone. He independently requests and collects prescription refills. In many ways he is ahead of the vast majority of 17-year-olds. But what about the ways in which he’s not ahead?
Academically speaking, Cameron is the opposite of “high-functioning”. He struggles mightily to read, and even more mightily to comprehend what he has read. For those doing the teaching, it’s very hard to assess just what Cameron knows and what he doesn’t know because of his low frustration tolerance. As a coping mechanism, Cameron has learned to nod and say the right thing to demonstrate understanding, but what he’s really doing is deflecting the attention he gets when he doesn’t understand something. Cameron is a challenge to highly-qualified instructors, and not because of inappropriate outbursts in class or inability to stay in his seat. No, Cameron needs proactive teaching, or he’s just going to go through the motions and gain very little understanding of the subject matter.
So Cameron needs very specialized education. But the kind of education Cameron needs usually goes along with very specialized behavior interventions. And because he doesn’t need the latter, he is labeled “too high-functioning”. Cameron has never fit neatly into a categorical description of a person with a disability. I’m grateful for every skill and strength Cameron has, and there are many. But I struggle mightily, alongside Cameron, finding a way to overcome his challenges. Were I to become a higher-functioning mom, I might even try home schooling. (Did I just put that in writing?)
Every night, after the dishes are finished, we lock the family room door and pull the shades before we retire to the rec room for the night to watch TV. Imagine my surprise when Cody took it upon himself to do these things, having never done so before and without being asked or prompted in any way. It has been this kind of initiation that we’ve been noticing a lot over the last two weeks from Cody.
The signs that Cody is becoming more independent and more responsible are emerging rapidly. And that is a welcomed sight. Once there had to be redirection and a prompt for every single step of making his bed, but now it’s a smooth process that Cody does on his own without being asked. It’s now simply a part of his daily routine.
Cody has taken it upon himself to rinse his dishes from breakfast and lunch and put them in the dishwasher without direction. If there are any dishes downstairs—whether they are his or someone else’s—he takes the initiative to carry them upstairs. It is a relief to see that my son is on his way to a more self-sustaining life.
But with this new found independence does come a bit of anxiety as well.
When it used to be that Cody had to be asked if he would like to go outside for a while, he now does that on his own also. So we are trying to teach him to let us know when he wishes to do that. Safety is still a bit of an issue. Trying to explain this to him presents a bit of a conundrum. He still has to learn that there are certain boundaries he can’t cross. Some activities can’t be done without our knowledge and others can’t be done at all for safety’s sake.
So then we get … the look!
To Cody, it is as if we are saying, “Be responsible, be independent—but not without our consent.” Anybody would feel confused by these mixed messages and we have to be open to the fact that it may bring about feelings of frustration, irritability and even resentment.
Cody doesn’t understand that we are pleased and excited about his progress. In spite of the fact that Cody is 25 years old, for us it is still like watching your child move from preteen years into adolescence. He’s more dependable but still has not reached the state of consciousness of adulthood.
The area in which we live is rural and wooded. While Cody has never roamed off the property, who is to say that, with this new desire to be liberated from parental control, he won’t wander? While the wildlife in the area is not of great concern, one still needs to have a watchful eye. Snakes have now emerged from hibernation and are seeking places where they can warm themselves in the sun and small prey to feed upon. Copperheads are especially hard to see in areas where there are fallen leaves. While their venom is not often deadly, they can make one very ill. Cottonmouths—snakes with a more toxic venom—like to hang out near the ponds and the wet weather creek which lies just at the end of the drive. Coyotes mostly run in packs, are mostly nocturnal, and scavenge and hunt small prey. But it is also not unheard of for a pack to take down a calf, or for a lone coyote to be seen roaming about in broad daylight. They are not likely to attack humans but here they have been seen running with other wild dogs that do. But it’s not our four-legged friends, nor the creepy crawly critters that bring me the most concern.
Not long ago we learned there had been a rash of robberies in the area. Neighbors’ houses have been broken into while the occupants were asleep. Just down the road, a meth house was busted a few years ago. Our little Mayberry-like community is not without its dangers.
So now Cody must survive the tiresome droning of his parents who he will see as overbearing and overly protective. And Bill and I must endure the frustrations of a young man who simply wishes to come into his own, but who still has much to learn. And while time will heal these superficial wounds and Cody will come to understand that our disquieted expression comes from nothing but love, for now we will bear these trials. Because even in paradise, serpents wander.
“It's crazy,” my best friend Tam said, smiling that mysterious, soon-to-be-a-mom-for-the-second-time smile. “Whenever I try to imagine what he or she will be like, I envision an exact duplicate of [our son]. Of course, that's ridiculous, but it's hard to imagine that they'll be their own new person, someone we could never have anticipated.”
I replied, “Yes … it must be wild for you to be getting ready to meet a new member of your family, and for [your son] to be meeting his new sibling. Willie and I are so different, and yet, there are these small, striking similarities that I encounter every now and then.”
And I told her the story of what had happened the night before. I'd been talking on the phone with my mom, coordinating birthday gifts for my dad and brother, so that I didn't end up giving them duplicates of anything they already owned. Willie's 25th birthday is coming up, and I wanted to get him something that would bring a smile to his face. I chose a pocket guide to dog breeds, since Willie loves to learn about canines. (I also wanted something thoughtful yet inexpensive, since Willie's been known to tear apart even his favorite books when he's having an out-of-control episode.)
As we were wrapping up our conversation, my mom put Willie on the phone. Willie and I talk on the phone every week, so that he can practice his conversational skills and so that we can keep in touch.
“Hi, Willie!” I said, happily surprised.
“Hi, Caroline!” he said, mirroring my upbeat tone. (I've noticed that Willie tends to match his tone to mine, taking his cues from my greeting.)
As always, my mind raced as I tried to think of questions that were concrete enough not to confuse Willie, but which were not yes-or-no queries. We ran through our usual repertoire, and then I said, “Did you have your piano lesson on Monday?”
“Yes...” he trailed off. I could feel that I was losing his attention, so I blurted out another question.
“What songs did you play on the piano today?” (Willie practices the piano every day, soon after his bus drops him off from work.)
“’Easy Rider’ … and ‘Rhapsody’ …” his voice faded out again.
“Great! Willie, you're so good at both of those. Which one is your favorite?”
Instead of answering in words, he started singing a few bars, oh-so-slightly off key, “Da da DA, dada da DA da.”
I cracked up. I had no idea what he was singing, but I was thrilled that he was singing for me, that he was trying to help me understand. I thought our mom had prompted him to sing the notes, to remind me of the tune, and I made a mental note to thank her for that. But something else was tugging at me too, a memory, a sense of deja-vu … but I brushed it aside, and focused on asking Willie a few more questions.
Soon after, Willie and I said our goodbyes, and he handed the phone back to my mom. She, too, was laughing at his antics.
“That's so funny how he sang to you!” she said.
“Wait,” I paused, “You didn't prompt him to do that? I thought you had!”
“No!” she exclaimed, “That was all him.”
It hit me: I'd done the same thing a few hours earlier. My husband had been playing his guitar, and a certain chord progression had made me sit up and say, “That's just like one of the themes from Gilmore Girls! Da Da, Da Da, Daaaa-Daaaa.” My husband rai sed his eyebrows at my atonal singing, and continued strumming away.
It was such a small moment, but it helped me to see: There are things that only our siblings understand. As challenging as our connection can become, there are moments when we do relate to one another like no one else … times that glimmer like gold for me.
As you know from my last column, I'm a first-time-father-to-be. Also, I'll be a stay-at-home dad. Never having cared for a baby before, I've enrolled in parenting class so I can master the basics.
Like, how do I relate to a tiny creature who can't (yet) speak English, screams (as far as I can tell) pretty much the same way whether s/he's colicky, hungry, filthy, in pain or afraid and relies on me (and, less of the time, Emily and others) for his/her every need?
Not to mention—that kid's not the only one who'll be afraid. S/he'll be afraid because s/he's totally helpless and has no idea how to deal with the world. I'm afraid already because I will be, for the first time, responsible for caring for someone who is totally helpless with no idea how to deal with the world. (And I don't get to respond in quite the same ways!)
This is the biggest deal ever. Remember the classic test of whether something is major: “Will people still remember it in a month, a year, a decade?” Well, whatever I do, my son or daughter is likely to remember, one way or another, for as long as s/he lives!
And speaking of what I do—of course it has some relation to how my mother and father raised me. Guess what that means? Yep—in the coming years I'll be raising not only a child directly, but also likely one or more grandchildren indirectly. And so on down the line potentially ad infinitum …
There are lots of things I won't be able to do any more except as rare treats. Like sleep for eight or even more hours at a stretch. Or put on headphones and seal myself off from the world. Or use/listen to/display on my screen/print out any kind of language I feel like.
Or just blame other parents for their kids' behavior without a second thought. Yes, parents are responsible for their children ... particularly their young children. Once the kids start going to school, responsibility inevitably shifts. And by the time you have a teenager, I understand that control gets really dicey.
Or be the center of my own world. As a good friend—who is a mother herself—pointed out to me recently, being a parent means being to some extent secondary to your kid. I'll still be “Jeffrey Deutsch,” but I'll also become “John's dad” or “Kathy's father.” (Or maybe even “John's/Kathy's grandfather” to the ushers at his or her college graduation—I’m no spring chicken even now!)
My life is changing and it's never coming back. And it's turning into a mode where change is the only constant. If you think everyday life requires flexibility, wait till you start raising a child.
I've mentioned before that I hope my son or daughter is an NT. I also can only hope that if so, s/he may one day understand why Daddy sometimes behaves a bit differently from most people.
Will my own child look down on me, or think I'm a freak? (Yeah, parents tend to embarrass their kids anyway—mainly by breathing. Maybe at least I'll give mine plenty to talk about at school!)
Will I have a hard time understanding him/her? (Yeah, there's always a generation gap. Will my being an Aspie make things that much worse?)
Will I be unable to spot problems—dating or other abuse, drugs, alcohol, the wrong crowd—before it's too late?
Gambling’s supposedly illegal in this country. But so many things about having a kid seem like just spins of the wheel. Maybe whoever wrote those laws was never a parent!
I want to be liked. There, I admitted it. It is important to me that others like me. This seems in direct contrast to an autistic spectrum diagnosis, which brings with it an implied lack of concern about the opinions of our fellows as related to our sense of self-worth. Popular opinion in the neurotypical world would have you believe that I pay little, if any, attention to whether or not others like me or find value in my contributions. For a long time, I believe this was a large part of my rationale behind not being open to considering whether or not I had a place on the spectrum. I cared what other people thought of me; I craved the approval of others—whether they played an integral role in my life or were merely on the periphery. I wanted to be liked, and I wanted this at any cost. Being liked, being thought well of, meant that I could avoid conflict. Avoiding conflict has been a motivating force in my little universe for as long as I can remember, going back to when I was a child and would get extremely defensive when “called on the carpet.” Which did not happen often, as I avoided conflict at all costs, after all.
Thanks to a series of disasters and miracles in my life of late, I find myself reaching a paradigm shift in how I think about myself, how I feel about my particular place in the scheme of things, and how my sense of self-worth has been tied in—for far too long—with how I perceived others to be thinking about me. I had already reached the point of being able to acknowledge that there was a decent chance that I was not always the best judge of what others were thinking. But that self-understanding did not go far enough in allowing me to get to the point of accepting that it was okay if everyone doesn’t like me, if everyone didn’t agree with me all the time, if everyone didn’t know what was going on inside my head and therefore could not respond the way I expected them to. That part is a process that is ongoing, and thanks to those aforementioned disasters and miracles, I am actually feeling as though I could shout, “Hey, there is a tunnel, and I see a light at the end of it!” This is most assuredly a positive on any number of levels, because one of the most important lessons I strive to impart to my students is how to accept feedback from their job coaches, teachers, and sometimes even fellow students when on the job. A tall order for even the most comprehensive Individualized Education Program! So while on the one hand, I feel extraordinarily grateful to have reached the point I am at now in my own social competence, with that comes a renewed sense of urgency at the professional task facing me. That goal set forth in an IEP that states that Student X will be able to accept performance feedback in an expected manner now more than ever seems to imply that the student has mastered the art of self-acceptance. And I think that may be a tall order for many of the young people in my professional life. Perhaps the lesson needs tweaking … with a disclaimer attached that reminds us—the teachers, the parents, the friends, the bosses—that along with the goal of teaching how to accept feedback needs to come the consistent reinforcement that negative feedback does not mean that one is not valued by the person giving the feedback. Rather, it is because we value you—the student, the child, the friend, the employee—that we are providing the feedback in the first place. When we stop learning, we cease to exist, and learning is an inherently interdependent process. So yes, I still want to be liked. BUT, finally, at long last, I can accept that some of the bluntest criticism can come from those whose opinion I most value—and really all that means is that they value me, too. I may not be at mastery level on this quite yet, but I am making marked progress towards the achievement of this goal.
It's time for what has become my somewhat regular installment from the air. I've had an unusual travel schedule lately, some pleasure, some not so much, and as I've mentioned before, I'm a bit of a nervous traveler. But in preparation for today's trip, something happened that will stay with me forever. As Cameron was preparing to go to bed last night, he came to me and said, "Well, if I don't see you in the morning ..." and he spread his arms out wide, waiting for a hug. Many of you reading this understand what a rare and elusive thing the unprompted hug is. When I told my husband about last night's display of affection, he was just as surprised as I had been. Cameron's unexpected gesture and the impact it had on me, got me to thinking about how many seemingly little things I've encountered on the Road to Transition which have caused enormous emotional waves within me.
As I stick to my New Year's Resolution, and diligently pursue opportunities for Cameron, I have been on an emotional roller coaster. There's the high of finding a program, or a camp, or even a summer tutor that makes me feel like things are really moving in the right direction. But there are inevitably the low of finding out Cameron doesn't qualify for a particular service or there isn't availability at the time he applies. This time last week, I was patting myself on the back, convinced Cameron had a well-planned summer ahead of him in which he would be in paid employment and would participate in a five-day/four-night disability leadership forum (without me) at a nearby college campus. I was giddy with the anticipation of Cameron's growing his resume and flexing his social skills. And then it all went downhill. He wasn't eligible for the leadership forum because we live in DC, and the event is for Maryland residents. The summer employment opportunities started looking bleak as well. The DC Summer Youth Employment Program, while having a wide selection of jobs and employers, didn't seem to have any opportunities that would be a good match for Cameron. My request for guidance from the program administrators went unanswered, and the application deadline has passed. My Plan B for summer employment has hit snags well. I became excited about a job development program which I learned has openings for DC students. But Cameron goes to school in Maryland, so when his Transition teacher inquired about enrolling him, she was told he didn't qualify because the school was in Maryland. But ... but ... he's a student of the DC Public School system. It's their decision to send him to school in Maryland. More unanswered emails have gone out, and a round of phone tag has ensued, and we're still trying to determine the viability of Plan B. I haven't given up, but I have to admit, it doesn't take much to make me feel defeated by all this.
And so I trudge on, taking the highs with the lows, knowing there will be more of each. No matter where the next step takes us, I will always be able to picture Cameron standing there, arms spread, waiting for a hug. It's all worth it in the end.
Spring is here and summer is on our doorstep. There are more activities that Cody and Stephen can do. But we’ve been noticing with Stephen’s earlier starting time and later quitting time that Cody is looking a bit weary. Bear in mind he’s been out of the habit of getting up early every day since his high school days. For six of the last seven years he’s been at home every day where he could retire to his room at will. Those days are gone now and he’s now in the process of being acclimated to the adult world of being responsible, doing household chores, waking at an earlier hour and staying on the go for six hours a day, five days a week. Stephen is coming four days a week and Cody rides with his grandmother to Grammy’s house on Tuesday. Sometimes I wonder if it may be too much.
But am I being overprotective? Things are going so well. Cody is leading a much fuller life than he has in years. And he enjoys all the activities he and Stephen do together. And if I curtail it now then how will it affect the hours the state has allotted him? I certainly don’t want to do anything to mess that up. We worked too hard to get it.
Cody is going to bed earlier at his own request and we of course don’t question that. But even on the weekends we are noticing that he still likes to go to bed rather early and still sleep in late. One thing that we also took note of is that Cody has had about a five-pound weight gain in the last couple of weeks.
Cody’s weight is something we keep a close eye on. There was a time when he was nearing the 300-pound mark. We tried diets and gyms and everything we could think of to help him bring the number on the scale back down. Then Cody started paying special attention to news segments that spoke specifically about diabetes and heart disease and how obesity can be a major contributing factor to both. His father is borderline diabetic and so is his grandfather. He has heard much discussion of it and quite frankly, it scared him. He took it upon himself to do something about his weight.
When Cody was at the table instead of cleaning his plate all the way, he started leaving a few bites of food at each meal. Then he would say quite emphatically, “I’m done!” It wasn’t enough to cause concern so we didn’t question it. Over time we started noticing his weight dropping. Of course as the pounds began to melt away, Cody felt more energetic. He began engaging in more physical activity. So then his weight started dropping more quickly. And we were very proud of him! By the end of one year’s time, he was down to about 220.
Since then he has leveled off at about 205. Given his bone structure and height, he’s still a tad on the heavy side but all in all it’s not bad. But this week when we saw him acting sluggish and then saw the scale hit the 210 mark, Bill and I wondered if the two might not go hand in hand.
Our family is not big on fast food or prepackaged foods. The preservatives and fat content in them is, as we all know, atrocious. So we eat mainly whole foods with ingredients that we scrutinize before we add them. But Bill and I are not sticklers about Cody going out to eat at his favorite restaurants once in a while. We want him to be able to enjoy life and have fun. However, given the kind of meals Cody is used to, more than once in a while would not be such a good thing.
Upon checking receipts Stephen brings back from their outings, it turns out that they had been hitting the fast food track pretty regular over the last couple of weeks.
I told Stephen about Cody’s weight gain and asked that they have more lunches at home. Stephen apologized but I wasn’t blaming him. He was simply doing his job.
Truthfully, it is easy for me to look past something like this when I see my son getting so much more out of life than he has in the past seven years. I’m just thankful we caught this small problem early and that it can be easily corrected without hindering all the progress Cody has made.
From the moment I read the first line of my friend's email (“This is horrific. Have you seen?”), I knew what I was about to encounter. A space in my stomach seemed to bottom out as I scrolled through the message. Embedded was the Youtube video filmed by Stuart Chaifetz, in which he shares the story of how Aikan, his son on the spectrum, was bullied by his special needs classroom teachers and aides. The audio clips—captured because Chaifetz put a wire on Aikan, hoping to solve the mystery of Aikan's “problem behavior” at school—are replete with taunts, name-calling, and verbal abuse.
Despite the fact that I'm knee-deep in the special needs world, I hadn't watched this video. Of course, it's because I'm so much a part of the autism community—because I know and love people with disabilities—that I hadn't seen it for myself. And so, fear fluttering through my fingers, I type a reply to my friend: “Have heard tell of it, but haven't watched ... just from knowing I would find it, as you say, horrific.” My friend, though, didn't let me off so easy. (True friends are tough like that.) When I read between the lines of her quick reply, I could hear what she was saying: "Girl, you need to summon up your strength and watch this."
And so I pressed play, because my friend is a brave advocate for the disenfranchised in our society, and because I don't want to be ruled by fear. It took courage for Stuart Chaifetz to film and share this video, to stand against bullying and injustice. It certainly took courage for Aikan to go into his classroom each day, knowing the kind of prejudice and verbal abuse that he would face there.
Aikan's courage called to mind that of another individual on the spectrum. When I spoke with singer, X-Factor star, and autism advocate Scott James this year, I was moved by his accounts of being bullied at school. In fact, the bullying he faced from other students was so severe that he became a virtual recluse, staying in his home for years on end. Scott counseled, “If you're being bullied, tell someone.” Yet I can't help but wonder why teachers didn't intervene when he was being bullied at school. Did they turn a blind eye to the problem? Were the bullies truly cunning enough to escape detection, or (more likely), were they simply not held accountable for their hurtful words and actions?
I was afraid to watch this video because it hits too close to home. (Literally—Aikan goes to school in northern New Jersey, where my family lives and where I grew up.) And at the same time, my fear gave me a clear direction; it directed me toward exactly what was most important for me to see. I watched the video because it's a representation of the kind of hurtful behavior that many people with autism face every single day. This instance of bullying isn't an isolated one; even in this age, many people don't know (or don't care to know) how to interact with people with special needs respectfully. And I realize: If I am to know and love individuals with autism, I need to enter into their life experience, however difficult it might be.
As the video ends, I'm not reduced to a puddle of tears. Instead, I am fired up. I am ready to get out there and do my part to create change in this world, one story, one act of courage at a time. Courage builds on courage. It's a gift given once you use it, and this writing is my way of both giving and receiving. If I could say anything to Aikan, and to the many others who have endured cruel taunts because of having autism, my words would echo Stuart's: “I am so sorry you went through all of this. You didn't deserve it. You are a wonderful human being, and I love you with all of my heart.” And you possess tremendous courage, too … the kind of courage that inspires us all.
Over the course of the past few weeks, I have become firmly aware that April was Autism Awareness Month. My mother had installed a blue light on the porch of my family’s home which symbolizes our commitment to spreading awareness of autism and a few of the neighbors have asked about it. She always takes a few moments to explain. Personally, I think there may be some people who may perceive our house as being part of some huge “blue light” sales special at one of the local K-Marts. However, I recently did my part to help spread awareness of this condition in my area by participating in an interview with a representative from our local Catholic newspaper.
My mother received a call from my former religious education teacher asking if my family would be interested in doing an article regarding how we have all dealt with living with autism. My parents and I discussed it and agreed that this would be an opportunity for all of us to share our story and contribute autism awareness.
I had a slight idea of what to expect when the interviewer showed up at the front door. I had been informed by my parents prior to the interview that the line of questioning would mainly focus on my experiences with autism and my religious beliefs. I therefore had some time to think about what I wanted to share about myself and how autism affects me. By the time the interviewer arrived, I had fully fleshed out my perceptions of autism and my spiritual views in ways that I hoped readers could understand, and I felt like I would be able to communicate these perceptions to the interviewer with little trouble.
The interview went by very quickly in my view. I spent the first few minutes with the interviewer talking about myself, my interests, and the work that goes into writing this column. We then went into my life with autism, detailing my understanding of the condition and how my life has progressed with my autism. We touched upon the adjustments I have had to make in my life and academic career, the special services I received, and other areas related to my education. Finally, we covered aspects of my religious life and how I believe my life is shaped by my spirituality. The tone of the interview was friendly and conversational and any anxieties I had about the interview quickly dissipated. A photographer from the paper then took some photographs of us to add to the article.
After speaking with me, the interviewer spoke with my parents about their life raising an autistic person. While this was occurring, I wrote an original piece of material about my views on autism for publication in the newspaper. I wrote that as a young boy there were times when I felt I was looking out through a narrow funnel toward the rest of the world and that I used to concentrate on minute details instead of taking in the big picture around me. I went on to explain how this made it very difficult for me to communicate with people and for them to understand me. With my parents’ help and some very dedicated educators and therapists patiently teaching me many different skills, I was able to open myself to the world around me, and I continue to grow to this day. I explained that I am no longer afraid to face the world and move on with my life.
About a week later, the interview appeared as part of an article about autism awareness in the paper. Our interview and the piece on autism I wrote ran alongside a profile of another autistic child from a nearby town. A photo of me and my family smiling like hyenas was included on the front page. I was very proud to contribute to Autism Awareness Month, and I feel that I will continue to do so as my life goes on. I have discovered that as an autistic person, I am in a unique position to inform other people what the condition is and what it is like to live with it. If I can help to bring about a better understanding of autism and help others with autism lead better lives, then I would feel that I have contributed something very important to the autism community. I needed a lot of help learning how to do things as I was growing up, and I still have much to learn. I just want to be able to help others as I have been helped.
I couldn’t take a bite of my salad—he wouldn’t let me.
“So, why does Madison go to school on the weekends, Aunt Becky?” my nine-year-old friend asked during a recent lunch outing.
“Oh, that’s not her school, Zander. It’s her camp,” I explained resting my fork on the side of my plate. Earlier that week, Madison had come home for a brief visit and birthday celebration—red velvet ice cream cake and tons of cheese pizza—before she went to her weekend respite camp.
“She attends school during the week, just like you. But, her school is about an hour away,” I continued. “Remember when we went there last year to take her back?”
“Oh yes, I remember.”
What he couldn’t remember, because we didn’t tell him, was that it was an emergency trip back to the school. Her visit home had to be cut short because of some aggressive alarming behaviors. His mom drove us back to Madison’s residential placement.
“We took her to her home there, remember?” Zander nodded and I continued to explain. “She lives with several other girls and they attend a special school together.” I paused to pick up my fork.
“But, Aunt Becky, how is it special?”
“Well, Madison has a teacher, a teacher’s assistant, and a one-on-one helper to keep Madison focused,” I said, putting my fork down again. I could see the “why” question forming in those deep brown eyes so I kept going.
“Remember how Madison popped up from the table to get a video from the basement during her birthday party?” Zander nodded.
“And then ran upstairs to find her Barney toy?” He nodded again.
“And then grabbed Pat’s pizza when she wasn’t looking and ate it?” Zander giggled at the last one, recalling her antics.
“Those classroom helpers keep her focused so she can learn,” I said, raising my fork once more for a bite.
“But, what does she learn, Aunt Becky?”
This time I put my fork down on the table, pushed my salad away, and grabbed another set of silverware.
“She is learning things like this,” I said as I unrolled more silverware and separated the pieces.
“She can look at all of these pieces of silverware and if her teacher says, ‘Put with same,’ pointing at the spoon, Madison knows how to put all the spoons together. In fact, it’s one of her jobs in her home there—sorting silverware.”
“Oh, I see,” said Zander.
“But the weekend camps she attends are for fun—a kind of vacation foe Madison. She gets to see her camp counselors that know her, old friends, and the chance to make new ones.”
By that time Zander had finished his cheeseburger and a few of his fries. Finally, I dug into my salad.
As I watched him nibble on the rest of his fries, I wondered how long he’d had these questions. It must be an odd feeling to have an older sibling who was so much younger in so many ways. During her birthday party the previous week, I had prompted her to speak with the scripted conversation she had learned many years ago.
Zander was fascinated.
“What’s your mommy’s name?” I asked. “Becky,” she replied.
“What’s your daddy’s name? “ “Joe.”
“What’s your sister’s name?” “Brittany.”
“What’s your brother’s name?” “PETER!” she shouted. She would always shout. We could never figure out what it was about Pete’s name that caused her to shout it, but she did, and does, every time.
After her spontaneous trip to the basement to grab a video, she came back to the pizza table and settled down.
“Zander, look what else Madison knows. Madison, look at me,” I began.
“When is your birthday?”
“March 24th” she boomed back.
“How old are you?”
“I’m 19 years old,” she said, flashing that impish smile of hers.
Zander’s eyes widened. I explained to him that it will take a few weeks for her to learn to say that she is 20 years old. Once she got stuck at 10 years old and said it straight through until she was twelve, I told him.
I wondered how long it will take her to learn 20.
But that day, she was on a roll —happy, engaged, and hitting all the right answers. So I continued.
“How are you?” I asked. “I’m fine,” she fired back.
“What’s up?” “Not much.”
And then my personal favorite, “How’s life, Madison?”
“Not bad,” she replied, giving me one of her trademark side glances.
And we all laughed. Yes, life was not bad, at least that day.
On a good day, most of Madison’s visits home are filled with giggles, smiles, and scripted phrases as she dances to the music in her head and darts from room to room in search of videos and her Barney. When she’s ready to go, she opens my gift bag drawer, pulls out a bag, and says, “Help me, please,” so she can open it for the prized videos she has collected for the return trip.
On a not-so-good day, words escape her and she resorts to tantrums, tears, and self-injurious behaviors. Emergency trips back are rare, but always anticipated.
No wonder Zander had so many meal-stopping, mind-poking questions. At least that day I had explanations for most of them.
There is so much, however, that simply can’t be explained.
Over the weekend, I read an article in the Washington Post entitled “Seeing a shortfall, parents of autistic kids mobilize.” The article is about concerned parents’ efforts to introduce a bill in Virginia to train educators to meet the needs of the autistic population. Train teachers on best ways to identify and interact with students with autism spectrum disorders? Well, duh! Who doesn’t think this is a good idea?
I, for one, have been guilty of assuming the teachers and professionals I entrust my son’s education to have been adequately trained, and know what they are doing. This was especially true back in the early school years when I was still coming to grips with Cameron riding the short bus to school, and needing special education services at all. Surely these professionals employed by the county knew what was best for Cameron. Or did they?
The Post article points out that special educators who received their degrees 25 years ago did not focus on autism while earning their credentials. With the increase in prevalence in autism, it’s concerning that there are special educators that are potentially ill-equipped to teach this population. Of course, many teachers hone their skills in the trenches of the day-to-day classroom, and have become excellent educators of the autism population. Unfortunately, not all teachers have the skill set necessary to adapt to the needs of the changing dynamics in the classroom. That’s why this Virginia law is a very good thing indeed. Parents have rightfully raised this issue, and by doing so will hopefully lessen the strain on parents in general, but specifically those parents that find being their child’s advocate a burden they are not prepared to bear.
As grant money becomes available for general classroom teacher training, we can’t ignore the next step: What about the postsecondary educators? As more and more students with autism spectrum disorders seek postsecondary placements, I’d have to think instructors at this level would be at an even greater disadvantage when it comes to teaching this population. Primary and secondary teachers must adapt to all types of students and are accustomed to doing just that. But at the postsecondary level? How best to prepare a tenured professor for an Aspie with executive dysfunction and sensory integration issues? Postsecondary education is not an entitlement for anyone. As parents, we can’t waive a copy of our child’s IEP at the instructor, and demand action. And while faculty members at postsecondary institutions may be experts in their selected fields of study, they may have little or no training in education itself. Much less special education.
Suffice is to say, when it comes to a student with ASD, parental involvement and advocacy for appropriate education does not end with high school graduation. We must do our due diligence when finding the next step on the education ladder. Being accepted into a program does not guarantee success. Parents know best the types of supports their student will need. If a program falls short when it comes to meeting those supports, don’t try to fit a square peg into a round hole. While most parents feel their parenting duties diminish during the college years, we ASD parents are just getting warmed up.
Last week¸ Cody went with Stephen on an outing to the park. When they came back, Stephen told me of an encounter Cody had with another individual who apparently had an intellectual disability where speech was limited as well. Stephen was very intrigued with the interaction that took place between them. It was without words.
I too have seen this kind of interaction with Cody and someone else who, for whatever reason, could not communicate verbally. Yet they still seemed to have this quiet understanding between them as to what information was being relayed back and forth.
Once we were all in a small café and the owner of the business happened to be the lady who took our order. Upon first glance at Cody, she didn’t know there was anything different about him. But when she began asking questions regarding what he would like to eat and drink it became very clear. She also had a daughter who experienced the same struggles with speech and language as Cody. And on this day, the daughter happened to be helping her mother in the kitchen at the restaurant.
The owner became very excited and said, “Oh my daughter needs to meet him! I’ll be right back!” And off she ran to the kitchen to get her.
A moment later she came back hand in hand with a young girl about the same age as Cody. This young lady had Down syndrome but her actions and mannerisms were very similar in nature to my son’s.
Upon being introduced to each other, the two shook hands. I watched them both as they looked at each other, both of them grinning ear to ear.
Cody was very excited and I could tell he wanted to giggle and it was taking tremendous effort for him to hold it back. The young lady was doing the same.
Finally, he said in a voice that waivered, “Hi … how are you?”
The young girl answered back in words that were barely audible. “Fine!” Then her grin grew even larger and she wrinkled her nose and looked down at the table. Cody could not contain his giggle anymore.
For several moments no words were spoken between the two of them. They looked at each other and Cody held his open hand up with fingers spread apart. Timidly, she put her hand up to his in the same fashion. Both of them laughed.
This kind of exchange went on for about three to four minutes and then the girl’s mother said to her, “Ok, I have to go back to work now!”
It was very interesting to watch. It was as if some telepathic conversation was taking place between this young lady and my son and only they were privy to what was being communicated. Was it?
It would not be the first time I have heard of such a thing among those on the autism spectrum. I once read a story written by a man who also had a son on the spectrum. He described his son’s interactions with his peers and co-workers in a local workshop where they lived, in much the same way. He said it was as though his son could simply hear the thoughts of the others there. Perhaps this sheds new light on gifts which people like Cody possess and the rest of us are simply too blind or too narrow-minded and closed-hearted to see and comprehend it. Who is to say they don’t possess it? Perhaps if this were true it might actually explain why they become irritable when we neurotypical types can see absolutely no reason for their irritability. And perhaps it might also explain some of the seemingly bizarre language patterns we often don’t understand.
I feel if we knew the full scope of what is involved in the thought patterns and brain functions of the autistic mind, we might all be in for a real awakening into the spirituality, intellectual abilities and philosophical reasoning that might put that of neurotypical counterparts to shame. Something so many refuse to believe to be possible!
Sometimes it seems as though our lives are loops of learning and forgetting, remembrance and loss. This week, I've been thinking about an important truth that we tend to forget: As close as we may be to another person, we don't know what it's like to live in their skin. We don't know, experientially, what it feels like for them to move through their daily lives. And remembering what we don't know is essential when it comes to our relationships with friends and family members with autism.
In this week's post at “A Wish Come Clear,” I shared the story of how a challenging illness helped me to feel greater compassion for my brother. Specifically, I reframed my situation by thinking about how it might be of service for my family as they navigate Willie's care. And ever since that experience of grace—the moment in which I realized that what I was going through might not be pointless pain, but might actually help us to understand Willie's experience—I haven't been able to look at the world in the same way. I keep looking at people around me, thinking about what they've been through in their lives, about how those difficult and beautiful moments might become lifelines for someone in need of compassion and understanding.
As I remember and pray for Willie this week, I'm thinking about the courage it takes for him, and for other individuals on the autism spectrum, to make their way through this world (a world that, for the most part, doesn't extend its hand in welcome). Last week, Benjamin Kellogg wrote poignantly about the courage it took for him to go to his first dance. His story made me appreciate the strength it takes for Willie to take risks, try new things, and apologize each time he has a meltdown. Willie suffers each time he loses control, but each day, he tries to begin anew. That kind of courage is, dare I say, exactly what the world needs more of.
And, though we can't fully know what another person experiences, we can remember that the lines we draw in society—the ones that distinguish neurotypical individuals from individuals on the autism spectrum, for example—may make our lives and fates seem farther apart than they are. Being a sibling to someone with special needs means living with this underlying, yet ever-present truth: Our sibling's life might have been our own, and vice versa. In an oh-so-slightly different world, I might have been diagnosed with autism, and Willie might have been termed neurotypical. And so siblings like me (perhaps more so than the rest of the world) realize that they might have experienced the world in an entirely different way than they do now.
We siblings see this truth with an often unsettling degree of clarity. And the way I see it, we can react to that truth in one of two ways. We can distance ourselves, overtly or covertly, from the experience of our brothers and sisters with special needs. Alternately, we can offer compassion, giving our best efforts to seeing life through the eyes of our siblings. Me? I've walked both roads. I've distanced myself from Willie in the past; I've seethed in rage at what I perceived as his tremendous selfishness. And, more recently, I've tried to love and accept him as he is, hoping against hope that that love might have the power to change my perspective, and our world.
We may not be able to literally walk in another's shoes, but we can do something. We can listen. We can pay attention. We can do the best we can to empathize, to hear what's behind the words and actions (and even the tantrums, or the self-injury). We can help others to lead fulfilling lives, yet also have the grace to let go when things don't go as planned. And in doing so, who knows what we might learn?
For my part, I've found the beautiful words of Kelle Hampton to be true: “I am learning, not just in parenting but in every relationship, that multiple languages exist and not one is superior to another. The more I listen, the better I love.”
Last Monday I gave a lecture at Children’s Specialized Hospital in Mountainside, NJ on “Transitioning with Autism from Pediatrics to Adulthood.”
Victory is ours! I've just received a text message from my mom, alerting me to the fact that she and my dad are signing their will and Willie's special needs trust papers this morning. ...
It is that time of year again, when families get together for holidays and people start Christmas shopping.
My daughter wrote a monologue for an acting class about growing up with a sibling on the spectrum.
I’ve come down with an early case of the “Bah Humbugs” this year.
Last Tuesday my sister Connie had to have a surgery.
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