I realized this pre-pubescence more accutely yesterday when he emerged from school. Usually full of smiles at seeing me, he looked cross. “Daddy’s house!” he exclaimed. His dad and the nanny tell me that Adam often asks for mommy when I’m not around. On occasion, Adam will check to see where I am, and he seems reassured. It was new for me to hear this declaration. When he looked disappointed to see me, I felt a mix of rejection and giddiness at the same time. After all, Adam is a boy and I hoped there would come a time when he would want to be with the boys. A boy is supposed to want to identify with the males in his life. But what of me?

“Hi honey,” I laughed, bending down to kiss his cheek. Adam’s eyes were still serious and he didn’t lean in to my lips as he usually does. “Daddy’s house!” he said again.

“You don’t want mommy?” I asked, forcing myself to appear a confident mother. Adam was silent as the teacher and I chit-chatted as usual.

“I couldn’t believe it today,” she said, her eyes wide and proud. “It was like watching an adult Adam. He did everything that was asked of him.” She put his hand on Adam’s shoulder while he was listening and looking at my car. “At one point my sentences were so long, I thought he wouldn’t understand me, but he could follow everything.” I took in a long breath and half-smiled, grateful for her positive report and enthusiasm. I grabbed the handle of Adam’s small red rollaway suitcase he takes to school and handed it to him as he began walking away.

“Thanks so much,” I said to the teacher turning and waving, and then tuned in on Adam who was walking ahead of me to the car. “Hey Adam, do you want to call Daddy?”

“Yes,” he replied firmly.

We got in the car and I called his dad on the Bluetooth. “Adam said ‘daddy’s house’ when he got out of school,” I said, “so we’re calling you.” Adam listened to his father’s cheery ‘hey buddy’ voice, and Adam talked a little — phone conversations are difficult for Adam to respond to. Afterwards, he seemed content.

We arrived home and Adam washed his own hands and headed for the kitchen for his snack, all without my reminding. He had a piano lesson, and Grandma and Grandpa came for a visit. Every time I went downstairs to see how he was doing, though, he pointed to the door. “Go away!”

“Okay, okay!” I said, trying to be jolly but it was a put on. My kid doesn’t want me. What an ingrate…that little schnood! (a word of affection that was developed in my family years ago). My feathers were a little ruffled and I mumbled briefly. What did I do to him today? Nothing out of the ordinary happened. Is this what is to come? My thoughts were skipping all over. Never you mind, Adam. I’ve been here for you all along and no matter what you think, I’m always going to love you. Then I started Googling in search of what age boys start really wanting their fathers.

As much as we want our kids to want us in a divorced situation, I welcome Adam’s need for his dad and other members of his family. It’s a new kind of separation like watching a child graduate or leave the house for the first time. While I am celebrating Adam’s growing independence and associations, I feel that this breaking away is just the beginning, and I’m a little sad too.

Everyone always said to me while Adam grows up, “consider yourself lucky that your kid doesn’t talk back to you.” That was always difficult for me to reason, as I longed to hear Adam’s voice and more complex thoughts, or his yelling at me that he was going to visit his friends. Thanks to his typing and his growing verbal ability, this is slowly changing, but having him grow up is surprisingly challenging in a way I’ve neither experienced nor expected. Is it perhaps more challenging when we have to let more dependent children “go?” You’d think I’d be jumping for joy, and while I sort of am, I missed his need of me. All sorts of “separations” were running through my head — all good, natural and still, emotional.

I want Adam to feel safe to feel and express whatever he needs. To help Adam, I started talking about his dad at the dinner table, and he was very attentive.”Daddy is funny isn’t he, Adam,” I said. He looked me straight in the eye and smiled. “Yes both mom and dad really love you.” I kept talking about love while drawing raindrops and animals with Adam at the table after dinner.

At the end of the evening when everyone was gone, Adam looked in my face; his eyes regained their sparkle for me. Then, he leaned in to give me a kiss. We went through our usual wind-down routine in our quiet house — a shower, teeth-brushing, and I’ve helped Adam become more independent doing these basic things. He climbed into bed merrily in his p.j’s with the dogs on them, carrying a book on How To Draw Insects.

“Mockingbird,” he asked as he burrowed himself under the duvet. It’s a song I’ve been singing to him since he was a toddler. I turned off the lights, snuggled alongside him and started to sing softly.

He didn’t tell me to go away.

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I’m in the process of completing forms. Adam was diagnosed with autism at eighteen months of age. Now that he’s ten, I’ve been re-reading files and reports from clinicians and teachers over the years. We’ve never had a formal IEP because he’s not in public school. Instead, I’m creating a comprehensive history of Adam. I’m also making it current, adding samples of his work along with new reports. I’m calling it Adam’s Ability Binder. It not only will list Adam’s challenges, but will focus more on his abilities as a means to serving him well. Ideally, it will address his ability and disparity of skills — where he is advanced and where his disability makes life more challenging. When it is done, I’m going to find a way to ask Adam what he likes the most and add that to the binder. Right now, I’m combing through years of typed conversations to include and add to this list.

My intention is that it becomes Adam’s living document that goes with him, and to which he can contribute as he grows older. We have no system which understands autism comprehensively, let alone the nuance of every autistic individual. I am trying to create that for Adam and I’m trying to work within the system we have.

I’ve been going through these “Autism Rating Scales” again. They took me three hours to complete. In some of the line I couldn’t stop myself from writing “that is a silly question.” Or “this is a biased question,” when refering to whether my child does “strange things.” I don’t think the things Adam does are “strange.” I know him to be a normal autistic person, for lack of better terminology.

Here were but some of my pet peeves about the questions:

How can we tell if a child is “laughing inappropriately” if they cannot tell us why they are laughing? Laughing and giggling can also be a sign of stress. What if a child’s autism doesn’t let them respond consistently? Adam can sometimes draw with great focus and other times he can barely seem to hold a crayon. Sometimes he speaks full sentences and other times he can’t utter a word. Talking about “shared interests” comes with great patience from a skilled communication partner, and Adam may reveal it verbally or typing, but not yet all of the time.

When completing the Vineland-II, BASC-2, GARS-2, ARS, or Conners 3, it’s so easy for me to notice what’s missing from these “scales.” I sigh and mumble through them, and realize I’ve got my own summaries to add. Many of the questions are also about friends. Adam seems aware of his difference, and I’ve learned this when he has typed about it. I also know Adam to avoid situations where he is aware of his difference or think he might fail. I’ve seen Adam approach a group of children to join in, then stops and waits on the sidelines because he doesn’t know how to “get in.” Recently when another child expressed pity towards him because he is autistic, Adam stopped jumping and smiling. After standing on the periphery of children, not sure of how to join them, he gives up and goes back to playing on his own. Sometimes he doesn’t know the rules of the game and can’t play when he is invited. Is this “not interested in other children?” Of course it isn’t. His inability to communicate like others, however, and in keeping up with the rapid rhythm of activity and conversation makes having friends challenging. Still, Adam has made leaps this year — wanting to join in with other children, and his increase in spoken language.

Thankfully the person evaluating Adam has recognized the limitations of these scales and the complexity of him. It is important to have your assessors understand this and urge them to observe in every setting possible. It’s important to know what lens we are assessing the autistic child through. Some of them can distort the image.

Now my back hurts from sitting at my desk too long. I’ll be back at it tomorrow, hoping to tip the scales in a fair direction.

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It was like yesterday. I went into labour and Adam arrived nine hours later. After he was born, he cried a lot and his eyes darted around the room. My narrative of Adam’s life in part goes like this: He was born and he was uncomfortable in this world. It was as if he already understood the painstaking road ahead.

I want to commend him and all that he has managed on his own — from the stares, to the people who have talked in front of him (all of us tend to do that until it dawns on us that we shouldn’t; we can be parents of typical kids and do it too). Despite his differences and challenges — he is neurologically complex unlike some other autistic kids — Adam has made friends in his own way. He will run up to someone and want his “squish” or “spin me higher.” He has a way of charming us to provide what he wants and needs. That look crosses over his face when he meets denial; his eyes begin to smile and glimmer like Marilyn Monroe on the silver screen. We succumb and receive our thank yous in many forms.

He has worked hard. He has struggled with motor planning and still finds it hard to hold a pencil, even a weighted one, among many of his challenges. For those moments he has been able to focus in the way we like to see, he has shown us what he can do — from typing, research projects, to his love of music, dance and YouTube. He is becoming a master of computer games, climbing, and of course, the trampoline. Aside from the times he needs some space from our demands, Adam has engaged us all.

I hope I can convey his beauty and loving nature on this blog. It is in honour of him as well as my message that he, as an autistic person, has been able to enamour us. It hasn’t been the other way around. Sure, many of us thought we had to engage him. We’ve taunted him with goodies and rewards to “respond” in a typical way as “proof” that he understands. Still, he’s in control. He has been all along. He has had to manage many of us “Typicals” in the way we speak, treat and regard him. Most of us don’t even notice how he’s able to do that.

As I create a plan for Adam which he will contribute to as he gets older, I think of everything Adam is, not what he should be. For ten years, I’ve heard more about his deficits and inconsitencies from teachers and professionals, and I’ve struggled with this like swimming against a strong tide. In all fairness to the wonderful people who have helped us on our journey, we all tend to focus on the gaps. Every parent wants their child to achieve. Every teacher strives to help a child become independent. It is our way of protecting and preparing them from and for a harsh world. I always need to come back to Adam and what he can do, or else I fear what may become of us. What of his autistic-ness has been consistent and is the message of how he needs to learn and be in the world? Once I view Adam as a consistent, whole being, I can see him.

Since he was eleven months old, Adam could decode or read words. He has been in love with books. The world, to use Adam’s own reference during a walk last week, may just be a series of “catacombs” that he is compelled to explore. It also causes him much anxiety. Be it his environments or knowledge itself, (see picture of Adam reading the dictionary), Adam is scaffolding and accumulating his knowledge, perhaps furiously, in neat boxes, in his very own and unique way. It may be one of his many contributions to us. There is value to how he learns, sees and thinks, and also in how he needs to navigate. I for one want to keep learning all about it. I want to keep “seeing” and supporting him despite all the veils that flutter in front of my eyes now and again, and that threaten to impede my view — many of my own making.

I look forward to the next ten years; our bumpy journey, joys and all.

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Yesterday Adam and I had a jog, a long walk and a trip to his favorite playground apparatus, a spiderweb made out of rope which he can climb through.

He’s particularly enamoured with this piece of equipment as he can climb and nudge his way through the holes in the rope that make it a “web.” As I watch him, he’s polite to the other kids, waiting for them to move aside, or trying not to get in their way. There’s an eager route happening that I can see he needs to complete. I watch his face and imagine the cogs churning and the patterns he might be making as he moves so quickly and gracefully, if not earnestly. I imagine math going on in his head as he figures out his route. He doesn’t need to hesitate, like the other children, to think of where his foot should go lest he fall a few feet down to the ground. Funny because Adam will sometimes hesitate just walking down a hall. He has mastered this web.

After that, we went on our long walk. As we passed an impressive Catholic school in the area, Adam spotted a path. I began to feel his body tensing as he pulled me towards it. I let go of his hand so he didn’t have to feel that I might say no. With the couple of times he bolted and his need to explore every door — “door is a question” he once typed — he seems to be afraid that someone will tell him that we can’t go through every door, so he pulls at our hands. This led to some tantrums and bolting last summer when we said he couldn’t go through many of those doors. He just couldn’t stop himself.

I felt the tension again and I wanted to see what would happen if I let go. His brow furrowed; he was serious, but he walked with me and I knew full well he didn’t want to be without me. He didn’t want to become lost. I took deep breaths and spoke softly, because he “absorbs” my feelings, but still, I was at the ready in case he got that eager look in his eye and wanted to run.

As we walked side by side he began to say “catacombs…. catacombs.” Adam is not being taught those words. Let’s just say, he’s got a lot more ability than most people can see, and leave that for now. The point is, like much “autistic language” I’ve seen and heard, he appropriated a word he learned on his own, somewhere, to the paths he was exploring.

I was sort of glad that the forested path came full circle. I didn’t want to stop him and I considered where-ever we ended up, we could take a cab home. Or at some point, I would be able to tell Adam that we had to turn around, and see how that went. This is going much much better now. Adam is less stressed when I explain it’s time to turn around when my voice is soft and I give him warning.

Exploring Adam’s “catacombs” with him can be fun, although I’ll admit that I often have my own agenda and I urge him to follow me. I know very well that I must explore his, with him. We may not be able to explore every door, and I know that his environments are very important to him. Yesterday, he gave me yet another insight into the confusing world, which he is so eager to see… and master.

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For Autism “Awareness” Day (in addition to my post below), my article Unlocking My Self is now up at Holland Blooview and for BLOOM.

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It’s “Autism Awareness Day.” I’m not sure I like all the “awareness” events that still grieve the autistic person, “locked inside” a body. Every day is an autism awareness event in our lives, and it can be rather tiring. It seems to take a huge percentage of our time justifying our right to be in school, regarded as intelligent, included in programs, or to be viewed just as any other person would want to be regarded and treated. It’s difficult to be included and accommodated without people wanting Adam to become more “normal.” It’s hard to find a seat at the table.

When I stood with my favorite autism moms at Adam’s school the other day, their children still toddlers, I witnessed, how dreary language and media representation effects our view of ourselves as well as our children. I’ve always felt that the way people make us feel for being different (aka “abnormal” and in need of fixing) makes life harder, not easier. It amazes me how parents lose faith so early on in the autism journey, and while it can be tiring with those sleepless nights, we have to learn that we are “normal” or “quirky” in our own right. This should be a day of celebration and acceptance. I find laughing at our autistic quirks in this house, with respect, helps us live more happily. Laughter enables us to accept ourselves.

At Adam’s school, they play musical chairs. You know how musical chairs goes — the music goes on, then it stops suddenly so the kids have to sit in the available chairs as quickly as possible. There is always one less chair than there is a child…go figure. Whomever doesn’t get a chair, loses. I’ll bet this game in particular is difficult for autistic kids who can’t catch the rhythm of social interaction and games like this one. Temple Grandin describes a scene like this when she’s watching a circle of people talking. She’s trying to participate but she describes it like trying to jump in on a game of Double Dutch (skipping for those who don’t know it). She just can’t get in.

For Adam, we’re still in the turn-taking and sequencing phases, and he’s learning to be patient while waiting for a turn. Yet he loves to dance with people! The music plays, he probably starts to dance or follows everyone in the circle, then probably doesn’t understand why he doesn’t get a chair. I’m not there, you see. But I can just imagine.

Adam gets upset when they turn off the music. I can picture him dancing and jumping with that ecstatic smile on his face. He’s probably thinking “What the ____? Put that music back on!”

Some days it’s hard to be an autism blogger or purporting a belief in autistic people, more than it is just to live in the moment and dance with Adam. He wants to dance with us. Please don’t pull away his chair at the table. He deserves a place there. Please don’t stop the music.

For viewing:

Here’s a video choice from John Michael Carly of GRASP who spoke at the Colombia University Centre for Bioethics last year.

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Canadian Association for Community Living

For Immediate Release
March 30, 2012

Disability Rights Organizations Launch Formal Complaint for Biased, Damaging Media Coverage

Toronto, ON – The Canadian Association for Community Living (CACL) joins other disability rights groups in calling on Global News to account for the exclusion of the voices of persons with disabilities and their families in recent programming and is launching a formal complaint in an attempt to address this issue.

On Friday March 16th, Global Television aired an episode of the program 16×9 accompanied by a live blog discussion featuring advocates who wish to change Canadian law in order to allow them to end the lives of their sons and daughters with disabilities. It featured a panel of convicted murderer, Robert Latimer; commentator Arthur Schafer, who has argued that Robert Latimer’s sentence was ‘unjust’ and Annette Corriveau a mother from Ontario who wants the law changed to allow her to end the life of her two children who have disabilities.

Laurie Larson, CACL President, stated: “There was an extreme bias represented by the program that needs to be explained. We were alarmed by Global’s uncritical promotion of these views and by the blatant disregard of the voices of the movement of people with disabilities and families who would tell “a different story.” This programming provided a mere platform for these views—not a discussion.”

CACL has been contacted by many in the disability community who were deeply disturbed by Global’s portrayal of life with a disability as a tragic life without value. The program repeatedly suggested that parents are being unreasonably prevented by law from acting on a wish to end the life of their child. The program incorrectly stated that Canada’s laws permit the removal of nutrition and hydration as a means for ending the life of a person with a disability. The uncritical presentation of such views is inflammatory and dangerous.

Canada’s laws are in place to protect the equal rights to life, safety and security shared by all citizens. These laws are especially critical as we enter times where people with disabilities, along with other groups such as the elderly or people with additional health care needs, are facing numerous threats to their well-being. In such times, CACL stands firmly on our vision of inclusion and principles of equality, diversity and community and will defend the equality rights of people with intellectual and other disabilities. We will continue to challenge positions that border on hate but parade in a cloak of ‘ethics’ and demand that media be held accountable for the broadcast of material that crosses the line from “controversial” to hurtful, damaging and inflammatory.

We are asking Canadians to join us in holding media to a high standard for public conversation of these difficult issues—not sensationalism and one-sided platforms that undermine both the moral and legal status of targeted groups, as was clearly the case here. CACL has registered a formal complaint with Global News and the Canadian Broadcast Standards Council and is asking other concerned Canadians to do the same.

- 30 -

For more information contact Michael Bach, CACL Executive Vice President, 416-209-7942; mbach@cacl.ca.

CACL President – Laurie Larson Addresses Global Television

March 30, 2012

To: Global Television
Attn: Jennifer Tryon (jennifer.tryon@globalnational.com)
CC: Canadian Broadcast Standards Council (complaints@cbsc.ca)

The Canadian Association for Community Living (CACL) is profoundly and deeply offended by recent biased and inflammatory programming aired on Global Television which broadcast views about the lives of people with disabilities that are hurtful, damaging and dangerous.

On Friday March 16th, Global Television aired an episode of the program 16×9 accompanied by a live blog discussion featuring advocates who wish to change Canadian law in order to allow them to end the lives of their sons and daughters with disabilities. It featured a panel of convicted murderer, Robert Latimer; commentator Arthur Schafer, who has argued that Robert Latimer’s sentence was ‘unjust’ and Annette Corriveau a mother from Ontario who wants the law changed to allow her to end the life of her two children who have disabilities.

CACL was shocked by the extreme bias of the panel assembled for the televised program and accompanying live blog discussion. The one-sidedness of the panel provided a platform for these views—not a discussion. We are alarmed by the uncritical acceptance and promotion of these views and by the blatant disregard of the voices of the movement of people with disabilities and families who would tell “a different story.”

There are deeply concerning shifts taking place in society whereby a ‘perfect storm’ of threats are increasingly making it a dangerous time to be a person with a disability. Resource constraints, exploding demands on the health care system, the ‘perfect baby’ myth, proliferation of pre-natal screening technologies and routine termination of pregnancies involving Downs Syndrome and other disability traits are all contributing to a bigger picture conflict whereby certain groups are being singled out and targeted. Global’s programming uncritically provided a platform for perpetuating profoundly devaluing and damaging views without regard for this bigger picture or providing opportunity for people with disabilities and their families to provide a different perspective.

In this context, we are deeply disturbed by Global’s portrayal of life with a disability as a tragic life without value. We reject the repeated and dangerous suggestion by the Global Television program that parents are being unreasonably prevented by law from acting on a wish to end the life of their child. We reject the inflammatory suggestion made in introducing the program that “the law of nature would not see their survival—but here, the law of a nation keeps them alive.” Further, we correct the inaccurate statement that Canada’s laws permit the removal of nutrition and hydration—food and water—as a means for ending the life of a person with a disability.

Canada’s laws are in place to protect the equal rights to life, safety and security shared by all citizens. These laws are especially critical as we enter times where people with disabilities, along with other groups such as the elderly or people with additional health care needs, are being singled out and targeted. In such times, we stand firmly on our vision of inclusion and guiding principles of equality, diversity and community and will defend the equality rights of people with intellectual and other disabilities. In order to do so, it is critical that we address outrageous instances where these notions are provided a platform and demand that media be held accountable for the broadcast of material that crosses the line from “controversial” to hurtful, damaging and inflammatory.

By this letter, we are registering our complaint regarding the views about people with disabilities broadcast on the program 16×9. We are also registering a formal complaint with the Canadian Broadcast Standards Council as we believe that this programming is in contradiction to a number of principles outlined in the Code of Ethics and Equitable Portrayal Code. We ask that Global take action to address and prevent such one sided portrayal of issues and we remain anxious to discuss how this might be achieved.

Sincerely,
Laurie Larson, President
Canadian Association for Community Living

Address postal inquiries to:

Canadian Association for Community Living Foundation
Kinsmen Building, York University 4700 Keele Street
Toronto, ON M3J 1P3

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He’s also so “on” the past few days, though, and I thought it was important to write about it in light of the recent release of Carly’s Voice. Adam also has to move and twitch. When he has a cold, his system seems suppresed enough to turn down the volume of his bodily movements that he can focus a lot better. It’s the jumbled Alphabet Soup of autism that we need to discuss here, and not every autistic person possesses the same level of tics & movement disturbance (read a couple of posts down from this one), which Carly and Adam seem to share to some extent.

Adam is not able to talk all of the time. It’s in part motor planning, “apraxia” and his neurology that effects his consistency. These “neurological inconsistencies” or “inconcistency in performance” are, for many autistic people, a real struggle. I am often told that Adam is a “complex” child because of it — that he’s “intelligent but inconisistent because he cannot always focus and always needs to move.” Teachers generally want to put him on meds. I am for medications if they assist the person in their own pain or distress. I’m concerned about using them only for “compliance.” Educators largely focus on an autistic student’s inability to sit still rather than what captures the ability — what engages the autistic child.

Sometimes Adam can say a perfectly clear sentence and make perfect sense, other times he mumbles like we all tend to do when we don’t know the words to a song. I can tell he’s trying very hard to form the words and it overjoys me. Other times he babbles and I can’t make out what he is saying. I’m frustrated with myself when he’s intentionally asking me for something because I can’t quite understand him and he’s looking right at me! I still try to acknowledge his utterances no matter what.

Some parents get really frustrated with the “babbling,” but I’ve learned it’s an important part of language aquisition — talking to oneself, self-babble. I would say don’t ever try to stop it. Even “shaping” it all the time can get very discouraging for the autistic person. While we can model, we don’t always want to be correcting a person. Sometimes I’ll just acknowledge like “oh” or “yes” or “I know what you mean.” I like to always remember that Adam is on a different trajectory than other kids. As I recollect our first decade now together, I relish in the fact that we have little chats, although idiosyncratic, in the car. Some people might view this still as extremely “impaired” communication between us. Yet, when Adam was a toddler, I had wondered if we’d ever have a chat in the car on the way home from school. There was always silence, and I wondered if all I would ever hear was my own voice.

This morning, he was reading to me! “Clink” he read from his book Spoon He can some days and not on others. The past couple of nights, he’s been picking up “age-appropriate” books, although he’ll also need his “baby books” for security and comfort. His recent favorite is Geronimo Stilton’s The Kingdom of Fantasy. I bought it because the chapters are short and the illustrations are great. He read the words effortlessly last night, while other days he struggles to get the words out of his mouth. He will stare at the word and utter nothing, or go to, what I call his “default word”; one which looks similar but is not the same, often triggered by the first two or three letters. I figure he’s trying to access it and because he can’t get it out quickly enough to appease me, he will say what first word comes to his mind. Often, it may take up to minutes for an autstic person to process what is being asked of them and then they will answer. Inconsistent.

These inconsistencies are really important to remember with some of the non verbal autistic children, many who have motor planning difficulty. It is one of the points also which many families do not understand about Facilitated Communication, or what is now called “Supported Typing” — what it is and why it exists. There was so much controversey about this effective and important way of teaching children with motor planning difficulties and low muscle tone that the term had to be changed. It had been abused by some therapists, but we’ve learned ways in which to avoid this abuse.

When we’re talking about getting devices into the hands of autistic children, I’m delighted. I’ve been advocating for that for nearly a decade now. The recently released book, Carly’s Voice will put more of these devices into the hands of autistic children. Carly has a strong voice and she can add to the other autistic individuals like her who use typing as their main form of communication — Amanda Baggs, Larry Bissonnette, Tito Mukhopadhyay to name only three of many. Every time another autistic person “comes out” I continue to have hope that our understanding of autistic people, and the education and the services they require, will be more available to them. I believe that the more educators are interested in teaching the autistic, the better education autistic people we will have. Educators have to believe in autistic people first, and I think Carly can help with this.

The one point I wish to extend about typing and using devices that wasn’t addressed in Carly’s Voice, is the critical role of the communication partner — particularly in the difficult beginning of learning how to use devices or in learning to type, which not all people with motor planning difficulties may be able to achieve. In the book, her dad, Arthur Fleischmann states that Carly could not initally type with her parents. When Carly was nestled in between her therapists Howard and Barb, she could type some of the time. Her father admits that he thought it “incredulous” when her therapists claim of her typing ability and intelligence.

Having close proximity to a communication partner is “Supported Typing.” It’s a form of prompt, security and trust, and it must be used in order to get many autistic people started. I know from Adam that typing open-ended conversations can be really hard for him. He may require reinforcers or some sort of assistance to keep going. He can type independently for things, now even some phrases, but when we have an open-ended conversation, he still needs me to sit closely. Learning how and when to push an autistic child to type is dependent on many factors that need to be carefully evaluated.

He is independent, some of the time, when motivated and when he knows what to do. He would not have started typing independently had I not began supported typing when he was four years old. When alone with YouTube, Adam can search for very sophisticated videos he wants like “psychedelic cartoons.” I don’t need to be there — his fingers can move as fast as lightening. He also spells on his own on his iPad spelling programs that he likes to play around with. Put him in an ABA program where he’s asked to type the same word that he’s known since he’s been 11 months of age, however, (he was also diagnosed hyperlexic), he may not type the “correct response” one hundred per cent of the time because, I imagine, he’s so bored and he can’t always do what is commanded of him. Or for the reasons cited above, he’s inconsistent. He’s consistent, however, in many other things, like his need for movement, deep pressure, his way of learning, and, well, being autistic, which is generally undervalued.

This is what I don’t like about ABA programs and why I think it holds the autistic child back in the area of academics, especially. I keep telling his school they need to move on — if he’s interested in YouTube or the computer, let him search and build his research and typing skills from there. ABA supervisors and therapists desperately need to learn the value of other methodologies such as supported typing and following an autistic person’s interests, not to mention truly understanding the need of certain physical movements in order to achieve comfort and to learn. Learning happens all the time, even for autistic people whom we tend to believe are not learning unless they are responding typically and “attending.” I struggle with the marrying of “learning how to respond typically,” and Adam’s innate ability, I’ll admit.

One strategy also that ABA’ers need to learn is not only to see what an autistic person is doing on their own “consistently,” even if it appears “atypical” but also to let them respond by giving them visual multiple choice since most autistic people are visual learners. Adam will usually score 90-100 percent on this method of testing knowledge. If asked to respond without the visual prompt, he’d be in a low percentile. Still, he’s judged on a typical scale instead of an autistic one most of the time. Visual support is critical to autistic learning and responding and should be used in any communication program.

When looking at Carly as a young child, because of her motor-planning difficulty, it is clear that she learns to press the buttons on her Cheap Talk machine (this is a machine loaded with PECS with a voice recording so the box is an early ‘talk box’ for very young children). Her index finger is held by the therapist and formed into a point. Her dad writes about her low muscle tone, so Carly would have needed this level of support. She is also lead to the box, which is an example of how many autistic children need to learn the purpose of these communication devices. We must not simply hand an autstic child a device and expect them to type miraculously. Watch for it in the shots where she is a little girl:

Some people don’t have the full motor capability and others are effected by movement disturbance — a form of catatonia in autism, or spasmodic-like movement – where they need a reminder to keep moving. This can be as subtle as a command to “keep going,” or a light touch on the shoulder. For more assistance, a backward pressure, or resistance, can be applied on the arm. It can servce as a physical reminder to keep moving the hand forward. If done correctly, the supporter will neutralize the users hand in the centre of the keyboard to ensure that there is no influence over the communication itself.

It is important not to acknowledge the hard work of many of autistic non verbal individuals, and their therapists, who learned to type and communicate this way. So many are independent now because of it, but just because some people cannot be fully independent is not to assume, as Carly says so well, that there is no intelligence. Carly also tells us that she worked very hard. It’s not easy for an autistic person to learn how to type, nor is it for parents and therapists. I know it’s not easy for Adam.

As a visual learner, Adam uses the program Pictello on his iPad for him to practice open-ended communication. What this means is communication without a specific ending that he would come easy for us, like conversation. Adam is able to take his own pictures, or we can of him, on his own device, he can load them into Pictello, and he can write independently about each picture, and we can have a conversation about his pictures. Due to his inconsistent capability of speech, we ask him to read the sentences he writes so we can record his own voice with the program. Afterwards, he’s created a story of his day and he can listen to himself narrate. His so delighted with it that he’s eager to use it everyday. He loves to hear his own voice and I can hear how he’s trying so hard!

Before the iPad we used the Alphasmart Neo because it was portable, but it didn’t have the text to speech output that has helped Adam also learn to talk. Now with the iPad, we have so many inexpensive options to communicate. I know the iPad isn’t accessible to all autistic families, and Autcom is also working in the US to get subsidy for families for the iPad. I hope Carly’s Voice and the many other autistic voices will continue to raise this awareness so that educators will be also eager to learn how autistic people can learn and communicate. Sometimes it takes such highly publicized success stories to get our educators even interested in our autistic kids. I am grateful that Arthur talks honestly about his own struggles as a parent, and still never giving up on Carly.

Let us all be patient and believe. The onus is not solely on the autistic person. We cannot expect them to know what to do with the device — it’s not easy to learn. It may take years. From my experience, and judging from Carly’s Voice, it’s well worth it.

Some References for Assistive Augmentative Communication and Supported Typing:

Pat Mirenda and Teresa Iacono, Autism Spectrum Disorders and AAC

Martha Leary, David Hill and Dr. Anne Donnellan, Movement Disturbance in Autism

Rosemary Crossley, Speechless, Facilitating Communication for People Without Voices

Syracuse University School of Education

Dr. Pat Mirenda on AAC

Dr. Douglas Biklen: Contested Words, Contested Science

Ralph James Savarese: Reasonable People: A Memoir Of Autism And Adoption (reviewed in Disability Studies Quarterly)

Conferences & Orgs for and by Autistic People And Where You Can Learn More About Autistic Learning Communication:

Autcom

Autreat

ASAN — Autistic Self Advocacy Network

Films to Watch on AAC and Supported Communication:

Sue Rubin: Autism is A World

Wretches and Jabberers

Tito Mukhopadhyay on 60 Minutes

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“It’s Time to Take Back April! Autism Acceptance Day and Month. This is the Autism Acceptance Day blog. ACCEPTANCE, not tolerance, not “yes, but…” (in the sense of “We can only accept you just so far…”) but complete acceptance. Pro-neurodiversity, pro-supports and services, against “cures.” 2012 is the second year of Autism Acceptance Day/Month.”

Check out the updates on the link above. No longer is it autism awareness month because as I said a couple of years ago now, “not all autism awareness is good autism awareness.” It’s also the reason why Autistic Pride Day was created by Autistic People on June 18th. Not April!

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This happens because we do not emphasize the value and rights of the autistic person in our society. As a parent, I’m infuriated that autistic people, and their families are rejected. We are exiled and isolated members of our society. Our children are challenges because we do not try and understand them. The one puzzle I find truly puzzling is how we continue to let this happen and why we always blame the autistic person. I’m currently writing a piece on how I have to work on myself; how I am the puzzle. Perhaps more of us typical folks need to not just work on this every day, but bring it to the attention of our politicians (although I did once to Jim Flaherty and he walked away from me as soon as I mentioned the word autism).

This is not autism’s fault, it’s ours. When one family is turned away, we all are.

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I’ve got days when I worry about Adam and how his distress is for him. The one thing that’s the most difficult for me to cope with as a parent is watching my son go through distress. Any parent wants to take a cold or the “thing” that’s distressing unto themselves instead of on their child. As I try to experience the journey with Adam, I’m going out for a jog for him (he’s with his dad this weekend). It’s part of my new regime of not just being with him, but helping him cope with his buzzing, moving body. I’m running as fast I can so I can be with him.

I was really upset with myself on Thursday. Typically, we go to a grocery store after school and we try to do a different errand every day. When we went to the store, Adam reached for the candy. I let him put in in the basket. When he wasn’t looking, I put the candy back on the shelf. I’ve done it before and he hadn’t noticed. Did I think that he just misses things? Had I devolved to that? We continued our shopping for healthy food and went to our usual check out lady, Leda, who always has time for Adam. Leda is like my island of calm and acceptance at the checkout as more people stare at us lately. We chit chat and she talks to Adam in between his jumping and hand-flapping. I’m not going to stop Adam from hand-flapping (although there’s enough pressure from those glaring eyes that I often think about it) and there’s no reason to explain him in a check-out line, so people will just have to deal with it, okay? Sometimes if Adam’s hands are occupied, he won’t flap, but there’s something in me that hates doing that for the sake of not being stared at! This is but one aspect of Abelism we live with every day.

When we got home, Adam helped me carry the grocery bags into the house. He’s good with hauling weight now and I think it must be good for his active, buzzing body. “Groceries!” he implored and the crinkling of plastic bags sounded urgent. Adam looked through every bag over and over again. “Grocery bag!” he said, looking at me, then quickly moving on in his search. I realized he was looking for the bird-egg blue gummies he found on the shelf. When he couldn’t find them, he began rummaging through all my kitchen cupboards, since I tend to hide food in odd places so he won’t keep eating the junk.

“Oh Adam, I didn’t buy the gummies. I put them back,” I said. He wasn’t satisfied, and kept looking. “No Adam, mummy didn’t buy the candy,” as I tried to stop his frenzied body from moving fast from cupboard to cupboard. Adam’s face looked desperate, his anxiety mounted quickly and I was worried. “Here Adam, we have lots of candy. Have a gummy bear.” I pulled them from the top shelf, hoping this would satisfy him and I could sit him down to dinner, because when he’s hungry, he becomes more anxious. He pushed them away. “No….groceries!” he insisted. He tailspinned.

I felt horrible. How could I have been so sneaky and put something back on the shelf without telling him either no, or showing him I was putting it back? I know I have to always work on myself as autism mom, no matter how much I think I accept my son. I have to respect him more. During the flatspin, though, I found the parachute. It was music. When I could coax his writhing, lanky body onto my knee, I held him and sang. I got a smile. Then, we ate dinner.

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With the sun comes another realization of the gifts I receive everyday and that these that I’m about to describe is all I would ever want.

Adam of course is one of them. Before I go on with my list I have to say that every time I write, I’m trying so hard not to elicit pity. The challenges Adam and I face are the “regular” part of our lives. I make choices every day to stick with him, even if I’m feeling pitiful. By dawn, my head always clears if I’ve had a challenging day before. I work on my self, rather than trying to change Adam, to remember what I always have believed about his value, his sweet nature, his ability. I do it because like many autism parents and people with disabilities, there’s a lot of pressure out there to be normal in every way. We can feel so isolated some days, and I often do. Then, I’m determined not to let it beat me up; that it’s for Adam that I also keep writing, thinking, trying to change the educational and other opportunities for him.

Just before the clock turns twelve, I think of all the people who are the real gifts in my life. You have all been a part of my growth as Adam’s parent:

My own parents who are a phone call away; the relatives who reach out just to let me know they are there if I need them; my friends who offer to watch Adam or want to spend time with him and with whom I spend my time with enjoying life; my best friends who always pull me out for a coffee no matter how busy I am; my boyfriend who is patient and kind, who taught me about love, and who is so gentle with Adam; my overseas friends who I went to school with — it always feels like yesterday when we get the chance to be together; the people I’ve met on and offline who check in on Adam and I (it’s so great when we meet at conferences); the educators and clinicians who we’ve been with for years, and some of them new. You are patient with me and my plentiful emails, always willing to discuss things with me. My autistic friends, some who I see, and some who are farther away but who are always so supportive of Adam and I in our journey. I hope I offer you the same support; the other parents like me with whom I’m able to visit and laugh, lovingly, about ourselves in raising our autisitc children — respectful humour is an effective healer. I know I’m missing some in this list, but believe me, you are not taken for granted. You all mean so much. I am rich because of you. Happy Birthday to me… yee hee!

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Adam is going through another phase and it’s time for me to be very hands-on again — new routines that may help his body and anxiety. He’s entering the pre-teen phase, and discovering things that can get him into trouble. I’ve started a running routine with Adam which helps his body calm down. Adam likes to jog (see photo). Yet like the time when we moved homes and Adam started severe spasming, he is now getting physically stuck — his body won’t let him get beyond a repeated movement. I can hear Adam start to whimper and I’m right there. Last night, it quickly became a loud cry. His face looked distressed and it took me a while to get him out of his chair.

“Are you stuck?” I asked

“Yes!” he yelled. Adam is not always able to respond when he’s experiencing this. He looked into my eyes, his body all sweaty, cheeks reddening. He let me hug him one moment, and pushed me away the next. I wanted to cry with him.

“One, two, three, four…walking out the door we go.” I sang my usual Feist tune which helps Adam move. Sometimes I hear him using it himself, which is a good sign that he can somedays. We make it to the shower where he has a “help me” look in his eye. He cried hard and I held him close. My heart breaks when he’s like this. Sometimes I get scared and I have to leave the room. I have to collect myself so I can comfort him, which I managed to do last night. Many times Adam will need to take a toy from on room in order to move on to the next thing. This he will do when he’s calmer but I realized it was a way for him to manage transitions, so I encourage it.

The distress, though — is it the new teeth punching through his gums? The lack of routine from vacation (he usually loves his vacation)? Growing pains? Another issue he cannot yet tell me about? These are some of the things we must guess as parents when communication falls apart. Sometimes he can speak in full sentences. Other days he can barely say a word. Some days he can type independently, while other days, or even moments, he will do anything to avoid typing. Adam is a neurological roller coaster ride and I’m on it with him. We can see what he is able to do and how intelligent he is, when his body permits him. When it doesn’t, Adam will become upset and frustrated. He is not in control of it. This is not behavioural.

On the weekened when he was drumming, he showed another flash of brillance — jamming in rhythm. It lasted a few seconds. Then his body took off in another direction and I had to help him focus again. Martha Leary and David Hill wrote about autism and movement disturbance and I am going to revisit it. Lorna Wing wrote about autism and catatonia. Catatonia is usally later onset — late teens, so I’m not sure if what I’m seeing with Adam is catatonia right now. In thinking about autism and movement, I remembered Amanda Bagg’s video How to Boil Water the Easy Way (and she’s wearing the Joy of Autism: Redefining Ability and Quality of Life event T-shirt). I remembered this video in order to remind myself what Adam is going through and in trying hard to relate to his experience. This is meant to be respectfully comedic. Please be patient with it and watch the entire video to really understand:

Of course, I’ve made the usual calls to investigate ways to assist Adam, and I am always in doubt. Medications are another roller coaster ride — perhaps the monster coaster that I’ve been avoiding, but I also know that I need to find ways to assist Adam with this type of pain. As for me, I often think that while I’ve assisted other people in their journey as an activist and advocate, it is in part to also help myself. I learn so much from others. I’m doing this alone in my home. Being a single parent, at night especially, has taught me that for all the times I think I can’t do it, I manage to. For all the times I think I may want to give up, I don’t. The thought of not being with Adam hurts me more. Talking it out or writing about it is helpful and for all the dark days, a good sleep and a new dawn sheds a new perspective. Adam woke up this morning with a smile on his face again, asking for bread and mustard for breakfast. There is still joy in autism and my son. He’s a fabulous human being! Yet like any parent, I have heartache when I see him in distress.

Other References:

Tony Attwood: Autism and Movement Disturbance
Martha Leary and David Hill: Moving On: Autism and Movement Disturbance
Lorna Wing: Catatonia in Autism Spectrum Disorders

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“Go ahead, Adam,” I said with people looking but trying not to stare. You know what I mean. People are generally pretty good about it. Human beings are wired to pay attention to the distressed, and we take it on when others are not feeling well.

“Jump now because on the plane we will have to sit,” I muttered out loud. There is part of me that needs to justify his actions. I want to “give permission,” to validate it. I feel if I responded aversely for the sake of sparing everyone else, I would increase the anxiety in the room for everyone, and I’d stigmatize my own son. I’m always trying to do right by Adam. I’m not sure if this was right, though. I wonder if I should just let it be and not say anything, which I then did for the rest of the delay. I felt the pressure of the eyes upon us.

Watching my son’s anxiety ratchet up isn’t easy. I like to solve all of his problems for him, I’ll admit. Yet here in public, I had to let him be, and guide him when I could. There was little I could say or do to appease this anxiety — this need for him to just arrive and walk right on the plane. I turned on the Timer on his iPad. That worked for a bit. A walk, the bathroom, a treat at the store. Our bag of tricks and distractions wasn’t working in the usual way. Trying to explain the reasons for the flight delay didn’t seem to help. It just made Adam angrier. He understood what I was saying. He just didn’t like it.

For a brief moment, I absorbed the negative part of anxiety. I stopped myself from getting angry and firmly asked, “Adam do you want to get on the plane, or go home?” I don’t usually give up, but I was about to this time. He stopped jumping with his square Buzz Light Year lunch box flapping in his right hand while his left was in the air.

“Get on the plane!” He looked at me assertively. He was certain.

“That’s clear,” I said. So we moved to the front of the line. The attendants were understanding and scanned our tickets.

“We’re not quite ready for you to board. It may be another ten minutes,” said the male attendant. He smiled empathetically.

Adam stood squarely facing the long walkway that leads to the airplane door. He could have bolted down but he didn’t, and I was not about to hold him back. I simply coached him in a very soft voice that no one else could hear: “We can go soon Adam, when the man tells us we can go. We have to wait here until the man tells us we can go.” I repeated like a soft Buddhist chant.

As I stood behind Adam, his lunchbox looking like a little briefcase, I had a flash vision of him as a young man. I began thinking of the times he will face delays, and not getting what he wants when he needs it. Likely, an expression of seriousness passed over me. I was thinking of how now is the time I really have to focus on helping Adam with patience and the many inevitable delays and disappointments of life. As I wondered if I was up for the task, I was looking at all the other faces in the waiting area; all the impatient ones. Adam manifested the frustration of everyone in that room. Maybe we say he hasn’t learned to “emotionally regulate,” but we all have to continue to practice patience.

“Okay you can go,” said the attendant, finally. Adam walked calmly down the corridor and once to his seat, he was all smiles.

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Please do NOT go to that link. If you do, your computer may be compromised. Share this information. We will also be sending out a newsletter to all of our members as soon as possible.

We apologize for any inconvenience this may cause.

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The Autism Acceptance Project will promote stories from autistic people, family members and others who have an autistic person in their life. If you are interested in writing, please enter your submissions to esteeklar@rogers.com.

All submissions will be reviewed by a small panel and will be posted on The Autism Acceptance Project website for Autistic Pride Day on June 18th, 2012. TAAProject will also be promoting your stories to the media.

Deadline for submissions: May 15, 2012.
Maximum Words: 1500.

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So when we spotted Mr. Plummer at the Four Seasons Cafe in Toronto when Adam was nearly three, I couldn’t resist. I’m not the kind of person who goes up to celebrities and asks for the autographs. I don’t like to disturb private lives. As Adam and I were leaving, we walked past Mr. Plummer and his wife who were sitting near the front of the cafe. The thought of missing an opportunity to thank him (for he did not know that Adam was autistic and could not speak) prompted me to turn around with Adam, who would not have recognized the older Plummer as his dear Captain.

“Excuse me, Mr. Plummer?” I approached timidlly with Adam by my side. 

“Yes!” he said delightedly, his eyes darting up at me who had interrupted a quiet conversation he seemed to be having with his wife. Already I was taken. 

“I just want to let you know that my son is a big fan. He watches The Sound of Music over and over again.” Mr. Plummer’s face was so gracious. At that point, I could have gone into a little diatribe of how Adam was autistic and how much that movie meant to us, but I didn’t want to take up Mr. Plummer’s precious time.

“Well,” he responded in that well-known dignified voice. “It’s so nice to see that my audience is growing younger and younger.” We both chuckled and I said thank you and goodbye.

Maybe Adam will enjoy that story one day. I sure enjoyed watching Mr. Plummer receiving his well-deserved award with the same graciousness we experienced that afternoon.  Little did Mr. Plummer know what a difference he made in Adam’s young life — how the movie taught him some language, music, made him laugh and calmed him nearly every night before bed. I suppose none of us truly realize the sprinkles of star dust we can leave upon each other.

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William Morris admonished, “Have nothing in your houses that you do not know to be useful, or believe to be beautiful.” Was he ever in a house with kids and a to-do list for an autistic one that seems to run miles ahead of me?

Ugh. I’m obsessed with clutter and yet I’m a secret stasher. My house looks organized, but watch out for those closets and filing cabinets! I like to hang on to everything! As many of you understand, my life is too busy to often think about things, so they get stored. Over the years though, the things in my life grow and gather and I find the closets too full, the toys too plentiful and I’m getting too tense with it all. Even with my autistic child and all the things I have to look ahead and plan for, I want a simpler life!

I look in the basement at all the toys. As is the case for many of our autistic children, baby toys are still comforting. It’s especially hard to toss out the old when, in Adam’s case, it becomes new again. Or for the toys that we were told to purchase when he was in early therapy, I keep thinking that someday, we’ll still get to them. Someone will want to teach him how to use the board games for reciprocal play.

I met Gretchen Rubin of The Happiness Project at the Blogher Conference in New York City several years ago. Her idea of living a happy life is de-cluttering our lives. I had to say that the idea of organizing didn’t make me happy, but the idea of having less to worry and think about does. Today, as I confront my office files and piles of Adam’s artwork before I get to his toy area, I’m so tense that I had to take a break and write this post just to avoid it! Why is clearing the clutter so anxiety-provoking? Why am I breathing heavier? Is it the time I know I going to have to invest? Will it take days? Weeks? What of the many lists and projects might I find that I have left undone? If they are to do with Adam, I’ll feel really guilty — the PECS I made, the schedules, the social stories, the other stories I write and leave in unpublished piles. What if I find out that I could have done more for Adam in all those to do lists that were left unchecked?

Ack. It seems I’ll be digging up more than just clutter.

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Adam has been home from school all week because of the flu. Finally this morning he woke up jumping. “I’m fine!” he declared as I entered his room. I’m so glad. One problem though: Last night, before any snow fell, I received an email from his school that it might close in case of snow. I was worried this would happen; that he’d be raring to go and get back to school and his friends, and not be able to.

When I was growing up, we never got notices like that. There would have to be five feet of snow outside our door and some severe wind for us to turn on the radio to try and hear if the school was closed. Like all children, I’d wait in anticipation to find out, and if it was, I couldn’t wait to get outside and play in it. Now we get an email suggesting the school may be closed if there is snow. The news gets more ratings with impending weather. They scare people like there’s a hurricane coming and we all better prepare. “Snowmageddon,” it’s now called — just a tad alarmist, I think, as I see a single snow flake float by my window.

The street is clear and the snow looks like it is just beginning to fall fairly gently. I’m emailing and calling, trying to get in touch with anyone who might be checking at Adam’s school. “Is the school open today? There is no snow,” I write.

I know, there’s more traffic. When the roads become icy, the roads aren’t fun to drive on. Perhaps calling in the army nearly a decade ago in Toronto after a big snow storm made everyone a little more cautious. But still. It’s just snow, and we seem afraid to let our children out in it.

Children don’t walk to school anymore. They are nannied, day-cared, and car-pooled to school. Let’s face it, we don’t let our children grow up until they’re thirty-five. Granted, I know when we are talking about autistic children, we all know they require more attention for their safety. Autistic adults may also need assistants when they are older. It still doesn’t mean we have to baby them, nor do they want to be babied. I think our over-protective parenting and super-cautiousness have negative effects on all of society. Now back to the snow…

The school is even located near the subway, you know those things that Mayor Rob Ford wants more of. That means we can even travel under the snow! So doesn’t that mean that there is a way to get around after all? They are calling for five, yes five (wow) centimeters of snow in Toronto today. That’s a far cry from the five feet outside our doorway when I was Adam’s age.

I just don’t know what has happened to us. Could it be that this is the first real snow of our Toronto winter that we’ve wimped out? Are we so excited that we have to declare it a city holiday? What happened to us fearless Canadians and the Canadian winter? More importantly, what is all of this doing to our children?

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