“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

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As we discuss the idea of healing, I’m wondering if we are able to view autism in this way — to not just create a revisionist view of autism, but even to reintegrate the experience — being a parent or a person with autism. The following video made me consider how we process experience as both typical and the neurological minority. Assume for a moment, based on our assumptions about rates of autism, that autistic people are the minority. I phrase it in this way because I am in the arts. I come across traits in “typical” people who are able to discuss their atypicalities and sensory abilities that seem outstandingly similar to autistic people, although some more major handicaps may not be present in some of these artists such as motor planning issues or an inability to talk. Yet the atypicalities are certainly present.

What I like about the following video is the way healing is discussed by integrating experience. Acceptance is like an integration of experience, and the expressions we make both scientifically and creatively become manifestations of how we re-integrate the understanding of this into our consciousness. The video speaks of other interesting things too which I could of gone on about (schooling for instance), but I’ll leave the rest of the video to speak for itself. Copy and past this address to your browser:

http://www.yorku.ca/yihr/Research/miniDocs/holly/index.html

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There is no new take these days on writing an autism and this in and of itself seems to me that either I’ve become over-saturated with the type of material, or I’ve simply reached a new parenting stage and where it takes me with writing here, I am not yet sure. I have tried to post a few interesting presentations on the blog the past couple of weeks. There are so many performances and exhibitions, and art is a segue to complex ideas often then used and analysed also by science as much as science can influence art. Of autistic performance and exhibition, please don’t label them as “miracles.”

I’m fatigued by references to miracles. Autistic achievement, as is discussed so often here on the blogs, is so often referenced as gifted or miraculous. There are no miracles. There is only what we wish to believe.

We’ve noted what a detriment to the autistic community such stereotyping can be. Even if it’s true that autistic thinking is different, and of benefit to our society in many ways, this is no reason to call it gifted or a “miracle.” When it comes to a play, or an autistic child typing, or a group of autistic children performing for an audience, I’m really taken aback at references to the achievements being “miracles.” However, if we are referring to all of us as being “miracles,” I sort of get that — I get that embrace of the miraculous state we call human. Miracles are a short-cut answer and resolution to that which is unresolvable. Try to tie it up with a convenient conclusion, and we will all fail.

Acceptance is as acceptance does, and in all likelihood, the name is too simple while embracing everything. “Simplicity embraces exactly the right details, the right difficulties, the right complexity,” but it also requires am effort in learning, observing, studying and yes, striving to argue well here in this contentious autism community. Acceptance is not simple. Autistic achievement is not a miracle, although it has been so unrecognized in human history that it is not surprising that we have labeled it as such. This is humanity we’re talking about. It’s messy, difficult, wonderful, full of frustration, anguish and yes, joyful.

And this may be the only miracle.

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All I need is this, and Adam needs my unconditional love.

It’s great being an autism mom, as it is any other kind. Happy Mother’s Day to all the autism mothers and grandmothers today.

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Unlike Dawn, I am not a woman with Aspergers nor a primate anthropologist who has garnered much of what she has learned about humanity through primates. If you have not read her book, Songs of A Gorilla Nation it is a must-read. It has left its imprint upon me for years now. No, I am a mother of an autistic child, similar but not just like, her child, relating to my son in unexpected ways, finding my points of context from art and my own awkward experiences growing up — trying to overlay those in helping me understand Adam’s path. My stress has mainly come from outsiders who have put the pressure on us to change and be something other than what we are. I am glad to understand this stress and pressure in order to better help Adam chart his course.

From the time I began The Joy of Autism blog — and been downright attacked for it when it first started in 2005 (see right margin for the archive) — I was incapable of viewing Adam as that “blight” and “burden” that autistics were named. Everything Adam did was a downright miracle to me. Today, Adam — a kind, affable, giggly boy, has developed a curiousity and way of learning that never ceases to expand my own world and way of seeing things. Like Dawn’s son, however, Adam is changing, developing tics. He is growing into a world that he is beginning to understand in ways that I knew (and feared) he would. One could say it happens to all parents. Yet Dawn’s essay, however, cites a few exceptionalities to the growth.

People fear each other. The flavor of distance seems to me to be how a community organizes itself. The codes of distance constitute the law—for the living and the dead, so people close the lid on the toilet when they sit down to talk to someone else in the bathroom, signaling that they don’t intend to dominantly mark their territory in the midst of the other; and men can’t pick up and hold a crying child who is a stranger. This is why people always smile and say hello more often when they are on a trail in the forest, far from help, than when they are on a city street.

Unfortunately, the chief danger and distance he was learning is that people can tell you that what you are isn’t what you should be. I knew that the children at school were teasing him for talking to plants and bugs and rocks. His teacher told us he had a learning disability and had some attention deficit problems. He was starting to not be able to sleep at night and had anxiety attacks. Where he had always been an easy child he started to throw himself to the floor and scream over the smallest challenges. He started to be unable to go to restaurants because the lights hurt his eyes and the normal noise of conversation hurt his ears—he would cover them with his hands and rock, trying to get under the table. He developed strict routines and would fall apart if something unexpected happened. He started to develop tics. He was becoming contextually autistic.

This essay is beautifully written. Remembering Teryk, her son, playing in the prototype sensory room set up at The Sheraton Hotel in Toronto, where I introduced myself to Dawn and received such a warm hug from her, I feel we share a bond beyond that introduction by way of this piece on the special privilege of raising an autistic child. It is the bond of easing ourselves into the world as both autistic people and as their parents amidst the deluge of questions, quandaries and challenges that continue to face our children all the while loving them and getting them for who they are. And who better than Dawn?

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When was he diagnosed?
How did you know?
How did it look?
Was he detached from you from birth?
Did he line his toys up?

Yada yada.

Please don’t get me wrong. I do not mind answering questions, but I also need to attend to my son. I suppose I should say I do not mind in the appropriate context. I would rather come in and answer any question on another day rather than be asked with Adam listening as if he’s not in the room. Indeed, I did mention something as politely as I could.

It’s a bit of an issue for us parents and for autistic people, this having to answer all of these questions all of the time. Yes, I mean every time we step out the door. Yet others have to understand that part of our willingness to answer such questions is also an attempt to be able to move on in our lives without having to explain ourselves — “us” being parents of autistic people or autistic people themselves.

Sometimes I wonder how far we’ve come in autism “advocacy” — if we are doing more harm than good. If people were not classified in the first place, if a statistical norm was never invented (indeed it was in the nineteenth century by the medical and legal communities in order to deem who might be dangerous in society — all based on possibility, not on facts…read Foucault), if autism and autistic people were not as targetted in the media as “abnormal,” if we were truly a more accepting society of all forms of human, we might not have to live our lives constantly having to answer how we exist and how we came to be.

Isn’t this what we’re aiming for — to live without question?

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We had to adapt his program, ourselves, while staying within the structure of the classroom. He worked alongside the other kids and the other kids loved him. He learned how to engage with them and they learned how to engage with him. It was very important at the time we made the move to a Montessori school that Adam be with peers and be able to learn to tolerate them, the noise, and being able to play and learn with others. It was the right move for him. My wish is that schools would provide more education about people with disabilities: how to be more patient, tolerant and accommodating, and there are programs in Toronto that are attempting to achieve such goals. Last night, I attended Inclusion Awards night in Toronto and spoke briefly with The Honourable David Onley (Governor General of Ontario) who is himself disabled.

It was a successful experience and I have to admit, we’ve not had any problems with our school choices like so many other families who must endure the public school system, the IPRC process and assigned E.A’s. In addition, too many “special needs” schools ironically turn down autistic children with behavioural challenges or children like Adam, who have difficulty talking. I understand that that is very difficult, heart-wrenching and it seems we sit on pins and needles waiting to see if we either get the luck of the draw or if we have to endure another heart-wrenching process as I have also been privy to it. This is the most unjust process I can think of as no child should be turned down from any school, let alone the “special needs” schools, but this is the reality right now. Here in Ontario so far, Inclusion is only as successful as the person who is leading the process within the school. A teacher is only as good who understands the child as a unique and whole human being, and is willing to go the extra mile. But for those of us who live through this daily, I’m not saying anything new.

Although I am thankful for our successful early years, our weekends were left struggling to find play-dates from many of these children. Adam always gravitates to the other students with special needs anyway, so it became easier to enroll him in social programs for special needs children. It’s a common story: like attracts like. We feel more comfortable with the people who may understand us and with whom we may understand, and we have to allow room for all of this in the Inclusion process. Adam’s school was a brilliant jumping board for Adam to graduate to the next level, so he will be attending a school that will be able to accommodate his learning needs more appropriate to his new found curiousity. Or so I’m hoping.

Inclusion is nascent in the Toronto community. Still, there are attitudes to hurdle, not to mention a reluctance to invest time, money and training, perhaps because these attitudes are not really up-to-speed. If a question I received yesterday from another parent with a child with another disability was any indication (“is your son violent?” ),one may begin to understand the many general assumptions that exist out in the world about autism and wonder if fear is the biggest barrier to Inclusion. I certainly don’t blame anyone for asking such questions — there are people with many challenges out there. Adam is not violent. He is affable, social (for an autie — he just does it differently but often craves being with others even if he may engage in the “Adam way”), and he wants to learn, even if he struggles with what appears to us like distraction (or should I rephrase that and say it is also us as the parents and teachers who struggle with it because it challenges us to have to learn and see the way our children might?). Adam is talking more now and he was approved for a new device which will enable him to communicate even more. He is bright, able in so many ways. He has a handicap in a world where his style of being is the minority, mind you, but this doesn’t stop him, or me, from moving ahead.

This is the first year I’ve engaged Adam in more special needs programs — for social skills, life-skills and general leisure. He is still Included in a “regular” summer camp, but Adam now needs a different kind of support as he grows into the world. I am very happy for him that he will be gaining these new skills and looking forward to his ability to help others, as I believe it is crucial in life that we all find our areas in which to swagger. In fact, as I’ve sat with it for a few days now, I’m thrilled. I still have no doubt that he will be able to do contribute and go on to further education in his future. It’s not an outrageous expectation: I’m basing it on the person I see in front of me who is utterly capable and who is a privileged boy in that he is being given two healthy, willing parents who enable opportunities for him in his life. I still work in Inclusion because I want to see more opportunities for Adam by the time he reaches his twenties. We have to work at all angles — both in Special Education and Inclusion. The trainings co-exist and are not exclusive of each other.

This lead to another thought I had this morning as I still read the many pleas for money for “Early Intervention.” I wondered why, after I’ve come so far in my own thinking, the term still bothers me to the extent that it does. So here’s my answer: Adam doesn’t need intervention. I may be lucky that Adam is an only child as I have nothing and no-one to compare him to except for my own childhood. I figure we have made our own normal. Our weekends are full — yes, we do visit friends and other children, we have programs to attend, concerts and plays to see — and yes, these have to be pre-planned (but then again, what family doesn’t organize a play-date?). No, I cannot drop him off and leave him alone in someone else’s house yet, but like all things Adam, he will do things his way and his own time. I could sit here and cry and bemoan that fact that he is not doing all of the “typical” things other boys his age might do, or imagine that he is somehow lonelier for it. But is he? He has no siblings to compare himself to. He is competent in our home, a burgeoning artist, musician and cook. He enjoys other children and will likely gain a long-time friend when he is ready. Like myself as an only-child, he has learned to entertain himself or play with me or spend time with his grandparents or much older half-siblings when they return from university. For us, our normal was early engagement and we grew into acceptance. For certain when Adam was two years old, I believed all this engagement would make him more “normal,” whatever that meant to me at the time. Six years later, I can see that our life is normal. It is normal to us and aside from our personal struggles recently with life transitions, I really love our life. I figure that one of the many gifts I might be able to give to Adam is my belief in this. All I have to do to believe it, is to let go.

The idea that one has to intervene still suggests that something is wrong. The other day, my best friend’s niece was on the A&E show called Intervention. Amy suffers from aneorexia/bulimia and is in serious trouble. The family asked for the show’s help in getting Amy the help she really needed. If not, Amy would die. To me, this is the seriousness of that word Intervention: it suggests that something is seriously wrong and is akin to the analogy that autism is like “a fate worse than cancer.”

It is not. Autism is our normal. Autism simply means that I needed to engage differently at those early stages of growth, not employ the tactics of early intervention. I wish I had had someone to tell me this when Adam was first diagnosed as it has taken me time to grow into my thoughts and words. Adam was not ready for the forty hours of ABA that was suggested back in those days, and we all know that even with all that ABA and all those promises, our children are still autistic.

When I hear parents complain about autism (see this blog on Kim Stagliano and her recent tirade on blaming autism for Aiden Johnson death), I can feel myself being sucked into a vortex and I do not see how that helps us become better parents to our children. Yet I suppose if certain parents truly feel empowered by believing autism is like cancer, if that gives them some kind of hope as the walks, marathons, runs do to defeat disease, then they will work and talk hard. They will use fighting-words.

I am of the belief that by fighting, one is defeating the child, not the autism. I am of the belief that by attacking the child from every angle like a huge dose of chemo sends a message to that child with a different perspective and manner of engaging in the world, that THEY are wrong. I see autistic children as they grow older with those beliefs surrounding them, absorbing the idea that autism is a disease and that “they are more than their autism.” What does that mean other than a denial that autism has truly effected the way one perceives and engages with others and the environment? Why not be proud of that and learn ways to take advantage of it?? I’m so sad to see parents fight so hard and then become so despondent.

I propose that while we are changing schools next term, that we again look at the terms we use. Had I intervened with Adam in an aggressive way, I truly believe he would have regressed into himself and perhaps with more aggressive behaviours. Instead, I propose we act gently. We have to challenge ourselves everyday with the notion that there are many kinds of normal in this world and while the world may not yet totally get it, it is through our use of terms and our actions that will enable the rest of our communities to jump aboard.

I am very uncomfortable using the term early intervention for assisting autistic children. I believe we have to work to change not only our attitudes, but our terms have to catch up. Perhaps we can use terms such as early engagement and early promotion of the different forms of play that we can engage autistic toddlers in the same respect and presentation we promote play for typical toddlers. Of course, the earlier we can do this, the earlier parents may be able to accept their autistic toddlers, and this supports everyone.

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While safety may involve anything from picture symbol reminders to locks, I’ve also paid attention to “safe spaces,” that is, making safe sensory places where Adam can escape and learn to self-regulate. As I mentioned in the article, as I learn about what Adam needs, I like to create fun, aesthetically-pleases places and devices that both Adam and I can live with and enjoy.

Photo credits (and all good photos of Adam are taken by) Mike Klar whose work is linked here.

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Stacy is a successful editor of Redbook Magazine. She begins at “the end,” she says — when her husband declares without counseling or any other clue, that “he’s done.” He leaves Stacy to piece together all the possible reasons for his leaving (over 300 of them apparently, which she has numbered), as well as the pieces of her life and very being. She is left to raise her three-year-old son Zack and learns to become a single parent, throughout trying to figure out where she belongs.

Chris, her ex, hangs around a bit, although he clearly doesn’t take a role in parenting in the beginning. With all of her obligations, her job, her type A personality, Stacy stumbles, crashes, falls, and then swims into new existence for as long as two-years post divorce. She finds she does not fit into old social networks, is struggling to keep all the balls in the air, while dealing with an “evil” house that gushes water in the basement which she must repair before selling it post-separation. The theme of gushing water runs throughout her memoir as she finds a new home for herself and for Zack. The sound of water (and she even experiences the gush in her new apartment from a leaky toilet) haunts her in her dreams even as she has moved into her new place and it serves as a metaphor for her feeling of drowning post-divorce. “I was still afraid of my not-quite-ex-husband and the way he seemed to hate me. And I still had to start over on starting over, because here I was almost two years later still stuck, still falling apart, still floundering, still drowning, goddammit. Still under water.” (p.205)

What was startling to me was to read how such a confident, capable woman, similar to most women I know, was so scared and disabled by having been left. It was striking because no matter how competent we believe we are, the dissolution of a relationship, especially one with a child, can be so debilitating and take years of recovery. It is endemic of our society that we think we can plan everything. It is this belief that we can actually be in control that leaves us standing dumbstruck at the aftermath, wondering why it all didn’t work out.

Chris, her ex, seems supportive of this book, wherein she regards his unfulfilled dreams having been one of the reasons for their divorce. “He hated me for being capable. For dealing. For buckling down and handling the stress of life. For being someone who attracted stress into our life. For being someone who liked challenges. For being the person who would step in when he had to step out.” (p. 63) For letting Stacy write this, I give Chris so much credit and it attests to his strength. It must be difficult to read about your short-comings from your ex, your unfulfilled business dreams (which I hope have since been fulfilled). Yet, on balance, Stacy lists a multitude of her own shortcomings and she has to work through the perceptions of Chris about her as well as of herself.

“At night I could feel other reasons sneaking into my head. I caught glimpses of where Chris and I didn’t see eye-to-eye, the parts to me that I didn’t necessarily even like myself, the instances in our marriage in which I had been selfish or mean or ungenerous, the moments when I had doubted our relationship. Maybe I was a bad person. Maybe I wasn’t who I thought I was. Maybe I was unlovable.” (p. 40) “Every single piece of who I thought I was was being called into question as I sifted through our shared history, looking for my answers.” Stacy talks about how he called her an “unhappy person” and “crazy,” which seems to be, as she notes later on, Chris’ issue. Yet it effects her to her very core as she tries to heal from the breakup.

In one exchange, she gathers her wits and says to Chris, “‘I am sorry that is how you see me and how you experience me. And I know that you do. But I know in my heart that I am a generous and loving person.’ It was the turning point, the moment I realized that I didn’t have to meet anger with anger, that I didn’t have to marinate all the terrible things he wanted me to feel….I could also see that Chris was lashing ot at me partly because leaving me hadn’t cleared him of his responsibilities to me and Zack, but I knew that whatever anger he was feeling about that was for Chris to deal with on his own. In that moment of vulnerability, of being open to his anger, I sensed a strength in myself that I knew I could trust.” (p. 121)

Stacy shares so much of herself and of her struggle to stay afloat emotionally for herself and her son and she learns to grow into a new relationship with Chris while letting go of the dynamic they once shared. She lets go of all the “complicated reasons a marriage starts to fray,” and reflects on her friends and colleagues need for a reason — did someone have an affair? Who was at fault? Although she was the one who “was left,” she doesn’t have a high opinion of how onlookers need to find reason or blame, and postulates that perhaps finding those easy reasons (at least easy in terms of logic) shields them from the many cracks in their own relationships. All one has to do is to look at Elizabeth Edwards and not feel terrible after what she has been through. The fact that a woman has to be blamed for “emasculating” her man if he has an affair or two is just but one example of how society wants to find a simple reason for a failed marriage. Certainly we all want to believe that we are untouchable by the possibility of breakups. We all want to believe that what happened to our friend, that politician or celebrity would never happen to us.

Stacy’s moral is that no life can be planned, and as a arch-planner, this was one of her lessons. She says, “Life is good. Life is hard. These two truths are unrelated…Everyone has pain in their life. It counts all the same.” (p. 230) The truth is, it can happen to anyone. There don’t seem to be any rules we can abide that can truly determine a successful relationship. There are too many factors in life, too many circumstances, too many turns to be able to determine a cause for either success of failure. Perhaps too, there is no such thing. Perhaps we are simply fortunate to have had a relationship at all — no matter what the duration.

While she becomes successful at learning to leave Chris’ opinions of her behind and leaves him to sort out his own issues, I once again applaud Chris for allowing Stacy to write this memoir so honestly. There is not a hint of self-pity in this book and for every one of her perspectives, I believe she is fair and she cites many of her own “faults.” It is simply an honest tale of how two people have grown apart and their need to find their own paths. In writing it five years post-divorce, she also calls her own situation “fortunate” in that she and Chris are still raising Zack together. “I think about how Chris is a much better partner now than he could ever have been if we had stayed married,” she says.

When reading her memoir, I think back to how excited I was to marry Adam’s father and how we spent our thirteen years together as a couple and all the joyous and challenging days. I think about how proud I am of having had that relationship and having Adam come from it. I had always called Adam our “love child,” as he was conceived right after our marriage. I remember the courting, the planning and how excited we were from all of that and how the whole family got involved and how important it was for me.

It saddens me, however, that we still, in a liberal day and age when we are learning to get along in many different familial configurations, that divorce can still become so acrimonious, and how it can end so abruptly. It is devastating for so many people — family and friends combined. While anger is natural, it is just but one stage in the process of divorce. It was this paragraph by Stacy that I liked that I feel could help people heal better, in order to honour a partnership so significant:

“I believe there has to be a better, more connected, more compassionate way to help people around us honor the end of one of life’s most beautiful leaps of faith.”

And that is what marriage is. It is a beautiful leap of faith against all odds, and like Stacy, I’m still glad I did it. By being glad, by honouring the time we spend with someone, we permit ourselves to move forward with evermore hope and joy in our lives. It seems that both Chris, Stacy and Zack have been able to do just that.

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“Oh my God!” exclaimed Adam. “Oh my God,” he said again like a Valley Girl. It is something that I say when I’m COMPLETELY AND UTTERLY FRUSTRATED WITH THIS NONSENSICAL TECHNOLOGY, and my boy is listening indeed. Coming out that cherub mouth, that voice that still sounds so very tiny let alone the mouth that says so little, I am of course ecstatic and laughing.

“You’re right Adam,” I affirmed by hugging him and scruffing up his dark blonde hair, “Mommy is really fed up with Rogers Cable. Just wait and I’ll see if I can fix it.” I attempted changing inputs, mumbling my frustrations to myself lest Adam learn some words I’d prefer he learn later on in life, checking cables and rebooting several times — all which seem smart and logical attempts at fixing the sound problem. Instead, Grandpa, who studied electrical engineering no less, jiggled the box and voila… the came sound back. If only I had thought of that. There is irony in this, I hope you see. Sometimes we try so hard to fix things when all it needs is a little jiggle.

I have to say that this Monday morning, the day after Adam’s 8th birthday and back to work and school, I am kinda floating on air. It was very apparent to me how much Adam needed me during this trip and how happy he was to see his mother happy again. Something has shifted during the heavy period of separation and we seem to be settling in. I think it started when I created my own space, made it mine and began to live in it. I knew that fixing a house was a process of also fixing me. I had thrown every effort and last bit of energy making it Adam’s and mine — a place where we could be happy again, and it saved me during this most difficult time. Yet by throwing myself into this, Adam was also needing me. While I was still living in the matrimonial home during the process of fixing up this house, the weight of it felt as heavy as being buried six feet under. The house I had built with my ex now came to represent loss. The foundation that had been faulty in that house and needed rebuilding, so symbolic. So how fortunate I was to have the time to create something new for Adam and I — something now that I have come to appreciate so much. So blessed do I feel today with spring upon us and having finally made that move so that we can move on with other things.

The house has a lot of light which was important to me when I found it. I wanted Adam to feel the light and the air as well. Moving was tough, as many of you already read in previous posts. For Adam, security is found in environments. It takes him time to adjust and this was extremely difficult beginning from late last fall. Every time I thought we were over a hump, we were right back where we started with really bad-looking spasms. I did not see Adam smile very much during this period, and it made my sadness and worry ever more pressing.

Despite having the house prepared, there is always more work once one moves in — things don’t work properly and living in the house day and night, I began to feel how it wanted to live. The house asked me to learn all of its idiosyncrasies. It asked me to support it and work with it. It has been a couple of months now since we moved in and I believe I am getting to know her well. I think the house is certainly feminine because she is beginning to support us.

In Florida I was relaxed and didn’t worry about the house or anything back home as I had in the past. I had completely relished in taking Adam many places, and swimming with him every day. I noticed his great huge smile returning, the way he listened and talked to me more than ever before. It seems every year and every trip and every new experience (even after hard ones) sends us forward again. Adam wanted to be with me so much as he grabbed my hand or told me what he wanted to do, looking up at me, smiling. All he wanted was his mother back and all to himself. Going through divorce I know I had tried even harder to be present for Adam, feeling so guilty about the breakup and upsetting his life. Such contrast in my states of being seem so stark now that time has passed and I am feeling relaxed again.

Returning from the airport was a little strange as this was the first time we would return from Florida to our new home and I realized it when we took the new route. I was concerned that the house would feel foreign again after nearly two years of hard labour and emotional work. Yet, when Adam ran up the stairs towards the front door, threw off his shoes and ran into the kitchen with a great big smile, that was it.

I did it, I thought. I made this house a home. Adam’s smile and getting right back into his routines was testament to this and his being here with me upon a return was one of those markers in my life that I will never forget. It was as if he gave me further permission to relax as he stuck in his metaphorical flag in our family-room floor. We belong here and we belong together.

The following day I set out hurriedly to prepare a birthday party for Adam that was suitable for him — the chocolate birthday cake, the sparkler, his favorite friend and cousin, and some family. Presents came next. The boy who never understood that there were presents underneath that paper several years ago (the paper had been entertainment enough back then) has learned to open them with greater anticipation. He was happily answering questions and hanging out with people, and took his favourite friend by the hand to show him his room. When we parents checked in on them, they shut the door on us, not wanting us to disturb their playing.

Adam’s happiness clearly has a direct effect on mine, and mine seems to have an effect on his. His happiness over the past twelve days has helped me and his feeling at home in his new house makes me feel as if I’ve earned, and learned, something important. Both the house and Adam pulled me out of my head during one of the toughest times of my life. Adam needed me every day and it was every morning that he got me out of bed during the first six months of my separation. Then, it was the house and a vision of Adam and I being happy together again that became a necessary obsession. Working on the house was the promise of hope.

While I have not written about my situation, and my deadline for finishing my manuscript is the end of this year, I’ve come to realize that even writing about writing here is a little difficult because I’ve been so close to intense emotions. I’m not so certain that no matter how a divorce happens, that the details matter in the end, although they make for my truth and the story itself. A marriage is so utterly complex that it is difficult to pinpoint one exact reason for it not working, and it is simply too easy to cast blame on people. For now, that’s all I say about the subject, except that like I always talk about in autism, life is supposed to be filled with challenges and joys. We so often want to avoid the things that are difficult but we forget that all of life’s events are unavoidable so we might as well live them well and let them build us. For that reason that I must be an optimist by nature and I will always be a risk-taker. I will always believe in love, partnership, marriage — whatever works. I believe in it even when I have tripped and fallen on marriage before.

I am still on a path on my own and with Adam. I am finding out where and who I am again. These are two separate things — this healing from divorce as well as raising a son with autism, yet I cannot avoid intertwining the experiences as Adam and I grow together. I do find it difficult to relate to other people who are divorced, for they do not have autistic children, and going online to talk about parenting children with autism is a little difficult when the parents are not divorced. Like my house, our lives are unique and we are growing into them every day. While I’d love to find easy answers on some days, or support networks on others, they never quite hit the mark and then I realize that I am truly on my own, no matter how supportive and uplifting friends are.

After all the guests left after chocolate cake on a sunny spring day, I remembered the day Adam was born and showed him a picture that sits at the entry of his bedroom with his birth announcement. His dad was equally excited the moment Adam was born and it felt a little odd that he was not with us yesterday, but I plugged on knowing that this absence is now permanent, at least for me, and our relationship as co-parents is also evolving and growing — all another step in accepting what is and what makes Adam and I a complete family. I let the moment pass through me thinking back to those eight years and quietly asked Adam to the wall where I could measure how tall he was. I miss the old measures in our old house where I marked the wall there beside his bathroom. I no longer have the measures when he turned two, three-years-old and so forth and something about that makes me feel a more profound loss, as simple as markings on a wall beside a bathroom may seem.

So at twilight I asked Adam to stand next to the rocket-ship measure I placed on the wall beside his new bathroom. He stood against the wall and I put a book on his head to mark it right, saying very little, feeling hushed by this moment:

47 inches
Adam, 8 years old
April 11, 2010.

Right there, on the wall of his bedroom. Like the flag being put into the ground.

Home.

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When I think of my youth I feel sorry not for myself

but for my body. It was so direct

and simple, so rational in its desires

wanting to be touched the way an otter

loves water, the way a giraffe

wants to amble the edge of the forest, nuzzling

the tender leaves at the tops of the trees. It seems

unfair, somehow, that my body had to suffer

because I, by which I mean my mind, was saddled

with certain unfortunate high-minded romantic notions

that made me tyrannize and patronize it

like a cruel medieval barn, or an ambitious

English-professor husband ashamed of his wife –

her love of sad movies, her budget casseroles

and regional vowels. Perhaps

my body would have liked to make some of our dates,

to come home at four in the morning and answer my scowl

with “None of your business!” Perhaps

it would have like more presents: silks, mascaras.

If we had had a more democratic arrangement

we might even have come, despite our different backgrounds,

to a grudging respect for each other, like Tony Curtis

and Sidney Poitier fleeing handcuffed together,

instead of the current curious shift of power

in which I find I am being reluctantly

dragged along by my body as though by some

swift and powerful dog. How eagerly

it plunges ahead, not stopping for anything,

as though it knows exactly where we are going.

—–
– poem by Katha Pollit (winner of the National Book Critics Circle Award)

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Sometimes its good to remember why we started something, measure how far we’ve come, and plan what still needs to be done. Seven thousand registered members later to The Autism Acceptance Project (www.taaproject.com), and a monthly newsletter, we want to continue to achieve greater understanding about autism.

I’ve got some of my own answers to the following questions, and I’ve certainly learned a lot more since giving those talks. But I want to ask you:

How far do you think we’ve come since 2006? What would be a main point or goal you think we need to achieve in the next two years?

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I was taking a forced break this week. I contracted that nasty stomach flu last Friday and today is the first day I’m feeling better. It’ll knock you down off your feet if you get it.

I realized too that it was a forced break and how I push myself too hard. I had been moving and fixing this new house for a year, I’m still doing it, I tried (with success) to transition Adam through a difficult time moving homes and then I suppose I should not be surprised that I got that nasty flu bug.

I got to thinking about how we push through things and quality of life. I’m a real doer by nature and compulsive at that. I often put way too much on my plate until I realize I simply cannot complete all the things I set out for myself. I don’t like to call it ’setting myself up for failure,’ but rather just that I still need to learn that compulsive doing is perhaps a way to avoid other things (which granted, I’ve been dealing with), and it’s just time to slow down and catch my breath.

We do it with our children too. We can throw so many things at them and change the course too soon. We doubt their schooling, their programs and we throw, oftentimes, too much at them to see “what will work” (to make them “better” or “progress”). Despite my intellectual knowing that this can create stress on children as well as adults and stress hinders any kind of progress, I’ll admit that I have the same feelings as many other parents out there. Thankfully, for the most part with Adam, I’ve stayed the course, that is, once we found the course that seemed right for him.

Adam and I are due for a break soon — to enjoy our new house, take leisurely walks in our new neighbourhood — to learn the routes that Adam enjoys creating to soothe himself and feel at home. We need to play a board game and some more Go Fish. We were doing nicely with that game. I helped Adam turn-take by using visual cues and the joy of this is, we are enjoying each other’s company in playing it.

I am feeling better now and Adam has been smiling a lot in his new home. One of my strategies was to bring Adam home early from school with his aide and surround him with familiar people, and this helped a great deal. It took three weeks before I really saw him begin to settle in. As you may remember from previous posts, he was having severe spasms that made us very worried about him, not to mention extreme sleep difficulties. Anxiety will create sleep difficulties in anyone, not just autistic people. In order to ease his anxiety, I’ve followed Adam’s lead and have tried to stay on top of when he is about to become over-aroused so I can redirect him to something less upsetting. Adam is pretty good at trying to do all of this for himself, but there are simply times, as he is still a child remember, that he needs some guidance and support. It strikes me as odd that we expect our autistic children to “behave better,” and do not consider the stressors in their lives with more deliberation and compassion. It was when I wrote down many notes about Adam’s behaviour during this transition, for there came a point that I didn’t know what else to do, that I not only came to see the patterns clearly, but I, as his parent, could settle down myself. My worries and expectations about Adam may have been so high, that I forgot to slow down for him too. I thought I had charted a pretty good course, but it wasn’t exactly what he had needed. It was at this point I decided to bring him home early from school for two weeks and enable him to have fun in his new home. It was also at this point that we began to see positive results.

Transitions are one thing — they are very difficult for all children, autistic people and especially for Adam. During these times, we have to take more time out of our “regular” routines to accommodate our autistic children. Sometimes we think we are doing everything we can and we can become frustrated with our efforts as parents. When we take the time to look carefully, it becomes easier to alter the accommodation to meet the person’s needs.

So we’ve come this far, and indeed I’ve learned another valuable lesson. Now….BREAK TIME! (Or maybe some Go Fish).

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It’s not all that easy to read in this day and age of watching our words regarding “struggle” and “fight,” so overused and sensationalized in the media to the detriment of autistic individuals. She uses these words more often although the tone of acceptance runs throughout, and this is a point I like to make often about autism acceptance: it doesn’t come without facing our inner doubts. If it were, it would lack real meaning and substance. Acceptance is something we must earn by facing them.

Adam spends some weekends with his father. This particular weekend, I caught the the stomach flu. Alone and sick (thus feeling particularly so…it always happens when we’re not feeling well), I yearned to speak Adam more often and to ask how his day went.  I was yearning for connection and I was also feeling guilty of not being able to take Adam back on Sunday night, when I would typically after a full weekend with his dad.  I wished to explain this to him, but Adam does not love sticking the telephone to his ear. In fact, he is exceptionally averse to it. My mother says Adam lives in the right era with all the technology that can help him. I’m not certain it is as good as we yet want it to be, but one thing’s for sure — thank goodness for Skype.

Skype is a recent life-saver. Adam’s dad and I have begun using it often and Adam holds his attention longer than using a telephone, as the visual is easier for him to understand. I can see him and he can see me and I feel a sense of huge relief. Then I wondered if Adam did too as he had to stay two extra nights with his dad because I did not want him to catch this outrageous flu. He loves his dad, but I wondered if he had natural questions about what was happening to his routine, and his mommy.

It was in Eustacia’s introduction that I tried to seek solace from this weekend. She said, “I’ve learned how the parents of autistic children suffer from a loss of their own sense of self. We all know that a baby needs a mother to know she’s a baby, but, equally true, a mother needs a baby to know she’s a mother.”

My friends and family, even my ex, all assure me that Adam knows I’m his mother during my more vulnerable moments, like this past weekend. I asked his aide today to help him understand that Adam would have to wait one more day to see mommy  — as I was hoping he could come home, but I am still too ill (do you understand how worried I was about this yet?). Adam texted me the following, I’m fairly sure, with a few reminders from his aide:

hi mommy

i like mommy

i like dinosaurs

mommy feeling sick. Feel happy. Feel better

i had chocolate after lunch

bye mommy

love you

Adam

I’ll take it. Yet I wondered today if Adam really missed me. It’s a natural wonder, I think. Even parents of neurotypical children might wonder the same when their children are with another parent, or with friends. We too need to receive love. We need these expressions of love that we have become so used to.

Later on Skype this afternoon and evening, I had a virtual “dinner” with Adam, thanks to his dad who put the camera straight on him.  After he became upset later in the evening, his dad put him in front of the camera. When he saw me, he calmed right down and smiled again. I spoke to him softly in my mother-voice, reminding him that I will see him again tomorrow. Again another smile; crying abated. That is the mother’s reward — her ability to calm her child. I completely understand the angst mothers feel when they do not feel they can appease their child’s pain or distress because I too have been through that.

So I am elated for it’s what I get — not yet the long drawn out conversations about what is happening, what may be confusing him, what he is excited about. Yet I think I can decipher it enough. We are communicating. Indeed, I need to remind myself of this in such times when I think of Adam as a person and his future, and my future as Adam’s mother.

“Think of me as your future,” says Eustacia. “I am where you will be many years from now, when you know how it all played out, when ‘what will be’ has turned into ‘what was,’ and you will have to come to terms with it.

Perhaps not in the way you thought you would, but you’ll no longer feel trapped in a morass of angst and guilt. You will have resolved your child’s future and your own. You’ll know you’ve given full measure, and the measure you’re given has never been pointless.

I offer you my story as a promise of that: an overall insight to carry with you as a talisman. And I promise that, in the future, to your surprise, your dreams will have changed and changed you.

I know that’s not what you want.

What you want is a real talisman, a magic something you think I conjured up to coax Temple into joining life, as you hope your child will. There was no magic; there was just doing the best I could. That’s the point; that’s the talisman.”

I’ve understood my son. Maybe he understands me better than I can know in the obvious, typical way. For certain, love goes deeper.

And it is louder than words.

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Much like how we view people and autism — that there is a goal that must be reached — that only one end result is desirable or feasible — we forget the journey and the process as the greatest creation of all. When all is said and done and the product is finished perhaps a few people will read our work, perhaps fewer will remember it (or as Elizabeth Gilbert and J.K. Rowling will attest — sometimes there is “freakish” success). But that does not make the doing, the making, any less significant. An act of creation is no waste of time. It pains me sometimes when I watch a culture so invested in the end result that we continue to churn out less creators and more factory-line producers in business administrators and lawyers (but let us not forget that there are wonderful creators in these professions as well). I have a real issue with “professionals” being churned out of universities, as I find that those without such degrees can be equally, if not more competent, in business. I believe university is an opportunity to receive the Universal Education – not a place to learn a trade. It’s not that I do not appreciate trades and craftsmanship, for I have great respect for it and also believe we undervalue true craftsmanship. I believe learning a craft is equally as important as learning philosophy, literature, art, and the sciences. My real point is, life is more than the products we produce. It is the intricacies, decisions, confusions and the work in between that is often more meaningful and interesting to us in the end. The “wax on, wax off” of the Karate Kid was more important than the rush to learn Karate.  If the process of our lives wasn’t important, we wouldn’t be writing and producing biographies of people and their private lives — we just wouldn’t be that interested in them. We always need and want to know the story behind the creator.

I like to think of writing a book or a blog as a process as important as writing the Book of Life. As I went to a funeral last week, the Rabbi concluded that the “book of [the person's] life had now ended.” Our lives are complex narratives. We are reluctant to put the book down. When reading, we have been so invested in the journey. If this is not testament to how important a process is, I don’t know what is.

It was listening to a number of authors last week talking about process that I realized we are not a culture that appreciates it very much while it’s underway. We have our eyes on the prize.  One author even stated that there is no such thing as a failure in writing. We must have many of them. In this sense, there is no such thing as a failure.

I’m still writing and doing a lot of research now that the bones of what I want to write seems to be constructed.  The research is so much a part of my journey that I can see how some writers may not want to stop. Yet certain chapters have to be written. Some have to end. There is always something new to write about. There will be an ending to mine soon. But until someone reads the last sentence in my own Book of Life, I’m going to try and continue to relish the process.

I hope it need not be mentioned that this post is a metaphor for all of life, and for our autistic children with whom we place so much stake on performance and end results. It seems a bit of a let-down to have to spell it out.

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Yet when I am feeling depleted, I fight it and I will urge every single one of you to do it too. For each one of us has that power, if we can be aware and monitor what’s happening to us inside. It’s important to remain honest with ourselves and then be able to step back from those feelings that can suck us down.

I reach out for help. I call people. I call Adam’s aides and therapists for help when I’m feeling overwhelmed. This is a good place to start. Always call for help and bring in only those who support you and your child in the manner that you need. Do not bring people in who will put you down, make you feel lower or try to fix your child. The most important thing you and your child need are love and respect.

One thing I know FOR SURE, is that there comes a time in life when we really do have to muster every bit of strength we have and resist the calls of the demons. The echoes of The Autism Everyday video and “wanting to drive over the George Washington bridge is like a siren call and this is why this kind of marketing — the kind that exploits and capitalizes on people’s pain — should be illegal in my opinion. It’s not that I disrespect Allison Tepper Singer for her genuine feelings that might be expressed cautiously in a book or another venue. It’s about how those feelings were exploited for capital gain: make autism desperate enough and we can raise money to cure it. Well, I’ve said it before and I’ll say it again: I believe this kind of marketing (consider type of presentation, method of delivery etc.,) is more harmful to parents than ever.

People shouldn’t have to stifle their feelings — that doesn’t help and can an adverse effect. I’ve read Sylvia Plath’s The Bell Jar and it’s all about wanting to die. Beautiful work exists because of honesty and by sharing honest feelings we do not feel alone. There are expressions of hopelessness everywhere — and some quite well-written in fact. Yet these can be used to empower and can also be used as cautionary tales. It’s the latter cautionary tale I wish to dwell upon. People must reach out in a world where literature on loneliness prevails. In this past weekend alone, I’ve found one book on Lonely by Emily White (it destigmatizes loneliness and it is an interesting read) and two articles on loneliness and depression (The New Yorker and a review of White’s book in Saturday’s Globe & Mail). It feels as if we live in a technologically hooked-up world that seems, in fact, to be coming socially undone.

This morning I find the following story on the murder of an autistic child (see below) which is why Autism Acceptance is so vitally, URGENTLY important — not just for parents but for society at large. Society must begin to realize the incredible challenges that families with autistic kids have when they are NOT included and accepted. If we are a community, then EVERYONE IS RESPONSIBLE. I take the story of Gigi (excerpted below…almost there) very seriously. It shows that no amount of money can fix anything. Better spent, is money accommodating autistic children and making sure every child gets a fair shot at being included and educated. If I have one dream, it would for The Autism Acceptance Project to raise more money to advocate more strongly that acceptance is a social responsibility, and to make a place where autistic kids can be fully accepted and receive an amazing education.

My former neighbour Mike Lipkin is motivational speaker extraordinaire and author of several books, one called Strong Mind, Strong Heart, co-written with Dr. Bernard Levinson. I’m very good friends with his exceptional wife and herself an inspiration, Hilary. Re-reading some of his chapters after a very challenging couple of weeks with Adam reminded me how certain thoughts are defeating. Mike reminds us:

“Are you worried about your children’s future? Are you unsure whether you’re on the high road or the low road? Have you noticed that everyone you talk to has a different idea of where you should be going? Are you slightly confused? Are you a little exhausted by having to make so many decisions all of the time? Are you being bombarded by massive change? Is your brain frying?” (p.88)

I think that many parents can say yes to all of these questions. We worry what will become of our children and where they’ll end up.

We want our kids to go to school, to have places to be social and be accepted there too. With so much negative information getting into our brains from the media or from individuals who believe that an autistic person is only better once they are cured, there are real dangers that lie ahead. By reading Gigi’s story (still coming, I promise) it was clear that she was overwhelmed with trying “fix the problem.” When one discovers that autism cannot be fixed or changed, but perhaps begins to appreciate that while there are challenges, there are many advantages, life begins to look a little less desperate. I urge everyone to consider the list of what an autistic child contributes to the family instead of what s/he takes away. While the rhythm of life certainly changes, it is only those who can adapt and learn to walk to the beat of the new drum who will find joy in life. An autistic child demands that we learn to go with the flow.

Mike Lipkin talks about this a bit, albeit not about autism specifically. He talks about how life “will hit you hard like hail from the sky.” (p. 79) He says that people need to learn how to be resilient. “Resilience is the ability to heal after a hurt. It’s the knowledge that bad things happen in this world, but just because bad things happen, it doesn’t mean you’re bad. People who lack resilience are people who invest too much negative meaning in what has happened to them. They obsess on the dark side of their psyche. They focus on why the knocks happened to them. They ask the fatal question:

Why does this have to happen to me?” (p 80)

We all have dark days. Autistic people also have dark days and learning to be resilient is hardest for them. The world is tough and it hits you hard. And you have to fight it with everything you’ve got. Gigi Jordan could not:

A few weeks ago a terrible story unfolded in a posh midtown Manhattan hotel where a 49-year-old mother, Gigi Jordan, was found “babbling and incoherent” beside the body of her eight-year-old son Jude, dead from an apparent overdose of ground up prescription pills, including Ambien and Xanax. Later it was revealed Jude was autistic.

In his press conference, the stunned and shattered father, estranged from his ex-wife and son for the last two years, said he had no idea what provoked his ex-wife to kill their child. “To be honest, she was the most wonderful mother I’ve ever seen. She left her business, left everything, just to take care of Jude.” Her oldest friend, Dr. Marcus Conant said, “She went to clinics all over the country looking for new treatments, grasping at straws, trying to fix the problem.”

The kind of hopelessness that Gigi faced might have been averted. Also new as a single mother, I know those nights when I feel I have no one to call upon. In those moments, I know I have to pull myself together again and remember that it’s always darkest before the dawn. It doesn’t have to be Adam that can make me feel this way. It could be a separation, a loss of a loved one.

Mike Lipkin would agree:

“One of the greatest sources of stress afflicting the people who come to us is the discontinuity that prevails everywhere. Just when our clients thought they had finally figured out a pattern, the pattern splintered into pieces again.” (p. 88) That pattern in the autism world is expectation. If we expect our children to change, to be fixed, to adapt easily, we cannot be resilient parents.

Mike suggests that we “sketch out many different paths” in our minds to “create an array of different possibilities.” He reminds us that not only is life unstable but that “as human beings, we have deep-rooted desire for certainty and stability, ” and quotes Francis Bacon who nearly 400 years ago said, “If a man begins with certainties, he shall end in doubts. But if he will be content to begin with doubts, he shall end in certainties.”

In autism too, there are no certainties. The article that talks about Gigi, talks about how the autistic brain “hardens” at the age of eight, and it would make any parent want to cry if you’ll believe it. Again, the article is somewhat misleading. It’s only through misleading expectations that a child must be fixed before the age of eight or all is lost that sends many parents into a tailspin like Gigi. Not only is this inaccurate about autistic people, but it’s this type of limited thinking that can stifle us and make us feel hopeless.

I for one know that autistic people continue to learn and the possibilities are endless as they are for any human being. Instead, as Adam also turns eight this April, I will ask myself how Adam and I can make a difference in the lives of others who are also on this path. For helping others and having this self-ascribed mission helps us. We have opportunities to learn. Every hard-knock and experience is another opportunity to learn. We get our hard-knocks every single day every time a school or a program doesn’t appreciate the special contributions Adam can make to the world. It’s enough to make me want to start my own school — and I know many other parents feel the same way (can we harness this energy??).

Do not listen to the media, but trust that your child is a human being filled with potential. The media will always be there, and sometimes it’s just a good idea to turn it off or give it a hearty guffaw because you will be tempted to feel sorry for yourself and this will deplete your capabilities as a parent. Become the kind of warrior that fends off the demons of the mind and the media. Remember that every child has difficult times and when our autistic children have them, we have to take deeper breaths, ask for help and figure out where this journey is supposed to take us alongside our children. While times seem a little easier for those with special needs, there’s a whole lot of discrimination still going on in our communities. WE have to change this together and support each other in our efforts.

“So once again, here’s one unchanging Life Principle over and over again,” says Mike. “You need a Still Mind to think through the confusion and noise. The only way you can master the cacophony on the outside is to have harmony on the inside. Without inner harmony and quiet, you cannot have a Strong Heart. And without a Strong Heart, where are you going to find the resources to not only brave the darkness, but lead others as well?” (p. 90).

It looks like all of us have to lead. It is also important to stop listening to others and begin believing in ourselves and our children.  We are forging ahead with a new demand in this world and that demand is that our children be integrated into our communities. For this, we need to be brave.

Adam and I had a tough weekend adapting, still, to his new home. So much so that I’ve asked his aide to bring him home early so we can begin implementing fun activities here and teach him some structure. It is my hope that he will swagger on his turf soon and we can both get back on the path of working on our mission which is to help others along in the Inclusion Process.

Yesterday morning, after a very dark night, I stopped my inner fight. I leaned in to Adam (who has difficulty speaking but not always understanding), and modeled language (this means that I say a sentence that he might wish to say himself in order to show him that I understand) while he was trying to soothe himself by playing on the computer. “I’m not feeling well, Mommy,” I said in a soft sweet voice. Immediately, Adam stopped what he was doing, came over and leaned his head of feather-hair into my arms for a hug, and we remained like that for a while. As the day wore on, Adam became calmer and things got a little better.

This morning, the sun came out and his happy grin made me shine inside. If we can hold on, the sun will come out again and the possibilities are endless. But you have to believe it. I hope by sharing a bit of our story and adding some inspirational words from my friend Mike, I have helped anyone who is reading this a little too.

For more reading on how to cope with dark days and how to take care of yourself in order to care for your child:

Still Mind, Strong Heart by Dr. Bernard Levinson and Mike Lipkin (not specifically on autism but created for inspiration)
More Than A Mom by Amy Baskin and Heather Fawcett
Autism Acceptance and Survival Guide by Susan Senator

Other Back to Basics Autism Books:

The Autism Answer Book by William Stillman
Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm
Autism Handbook for Parents: Facts and Strategies for Parenting Success by Janice E. Janzen
Parenting Your Complex Child, by Peggy Lou Morgon

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A new study by researchers from the University of Miami shows that maternal sensitivity may influence language development among children who go on to develop autism. Although parenting styles are not considered as a cause for autism, this report examines how early parenting can promote resiliency in this population. The study entitled, “A Pilot Study of Maternal Sensitivity in the Context of Emergent Autism,” is published online this month and will appear in an upcoming issue of the Journal of Autism and Developmental Disorders.

I am not commenting on how the study was conducted nor the value of “resiliency.” I am commenting on the inference. I am a sensitive mother. Some say I’m pretty good at mothering. I’m extremely sensitive to my son, and he is non verbal. He can manage a word or phrase now and again, but at nearly eight years of age, it’s pretty difficult. I engaged Adam. I did everything (and still do everything) I can think of. He is a wonderful child who is anxious and has some sleep issues. I’m not sure I could have been even more sensitive than I was to make him more resilient. While he’s pretty good at moving around the community, going to school (with an aide), traveling, he does have extremely difficult days too and we are going through some of them RIGHT NOW during a major transition in our lives. Because of Adam I continue to grow and learn how to work with him, and there is always something new for me to learn.

With this study, I fail to see an acknowledgment (in the links I could find tonight, I have to qualify this) that for many autistic individuals the inability to speak fluently, or at all, is neurological, not just dependent on the sensitive mother. The term “re-wiring” is used a lot for individuals with brain injury and just as often by gurus selling therapies for curing autism. I will never argue that, as parents, we all want to try and help our children in a world that is often confusing and frustrating for them. Yet, I also wonder if teaching autistic children how to communicate is something very different than re-wiring, for that implies that we are fixing something to make it better. Adam communicates all the time. Like the two-year-old who may have warbled speech indecipherable to many but the parent, some of us close to Adam know what he is communicating — and quite boldly. Perhaps we might consider that working with autistic children is like figuring out the intricate wiring that already exists. Like the ill-suited American plug to the European outlet, maybe we aren’t meant to re-wire the autistic brain into a neurotypical one.

“In this study, maternal sensitivity (and primarily, sensitive structuring) was more predictive of language growth among toddlers developing autism than among children who did not go on to an autism diagnosis. One possible explanation is that children with autism may be more dependent on their environment to learn certain skills that seem to come more naturally to other children.”

I would agree that our children need our support, and this does take extra effort on our part.

“Parenting may matter even more for children with developmental problems such as autism because certain things that tend to develop easily in children with typical neurological development, like social communication, don’t come as naturally for kids with autism, so these skills need to be taught,” says Jason K. Baker, a postdoctoral fellow at the Waisman Center, University of Wisconsin-Madison, who conducted the study with Messinger while at UM.”

I don’t disagree with the idea that autistic children require more support and accommodation in a confusing environment, and that “being sensitive” is especially important. Many of this know this. I tend to see this as part of the autism and NT (neurotypical) equation, for the key is that we as parents learn how our children learn and how they see the world. I don’t see it as a tugging into “our world,” but a sharing. It’s the manner in which we, as parents, figure out how to be with the child who is already with us, with challenges in a world that has such difficulty understanding autism, but also with many strengths and attributes. Acceptance is a daily exercise and the idea will challenge us day in and day out — some days (and nights) more than others. Every day Adam works so hard to accept me, to accept this world and the people around him, and I wonder if that’s all we seem to ask him to do. The least we can do is to accommodate him and what he needs and wants from this world.

This article ends with a shallow disclaimer: “We know that parenting doesn’t cause autism. The message here is that parents can make a difference in helping their children fight against autism.” Okay, it doesn’t cause autism, but the implication is that the sensitive mother can improve language acquisition and resiliency skills. The results may have been one hundred percent true according to the study design, but the key piece of accepting autism is missing.

While it is certainly advantageous to have a sensitive parent to ANY child, I would hate to think that one might judge me as being an insensitive one if my son is not able to speak. Further, the focus on mothers specifically has reminded me of times I thought had long gone by. Maybe the Refrigerator Mother still lurks in the dark recesses of some minds. To conclude from my peripheral read and no reading of scientific critique on how the study was conducted, I sniff not only an omission or two, but a little bias.

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In the media, the debate rages as to whether the whale should be put down, kept at Seaworld to remain an entertainer, or be sent to a Sea Tank in Iceland — a choice which Rose recommends. Transcribing her statements on CBC today, she noted that Tilikum has a history of this behaviour and should not be kept under the same conditions. In other words, get the message!

“He could be trained to adjust to going out into the open ocean to exercise and get more choices and then maybe his stress would be reduced,” she said, suggesting Tilikum may have simply been trying to play with his trainer.

“If they keep him in isolation the way they do, they keep him in that small tank that he’s in, this is going to happen again.”

There sure is a lot of attention for this beautiful creature. All the talk about how the animal is under stress and how that animal communicates that stress naturally got me thinking about Adam, autism and methods of communication and how many of us do the same things over and over again to no avail. Working against nature doesn’t work for very long. It has real consequences.

We are calmer on the home-front again and Adam seems to have found his place here in the house that has been understandably strange. I expect that while he is calm now, we will have a few more bouts of stress. Like Tilikum, we cannot demand that he perform like nothing has happened to him, or not react to this kind of change. Adam will communicate his true nature and it is up to me to listen.

Now if autism advocates would advocate for autism they way Naomi Rose does for Tilikum…

In keeping with the theme of this story is a post by Clay I would urge readers to visit: “Violated for Having Autism.” 

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But there’s another problem.

It could be me.

I need to re-learn my ABC’s. Remember those: Antecedent, Behaviour, Consequence? We put an autistic child under our neurotypical microscope (as if that doesn’t cause distress), and evaluate the antecedent (or cause) of a behaviour so that we can seek to change (or eliminate) it. The Consequence in behavioural-speak is what happens after the behaviour. I’m not saying that these tools are not useful to us. They can be if we learn how to assist autistic children cope. I’m not a fan of eliminating behaviour. But there’s another side to this story.

When I worry I am studying Adam. I watch for every little sign. Then I realize that I’m not watching myself. How am I feeling? How has my anxiety triggered a course of events? Adam just wants to explore, and yes, he cannot sleep like most autistic people who, as they become adults, learn to cope on very little. In his new home, Adam is very “disorganized” in his body (for those unfamiliar with this language, it means that Adam is moving his body in unfamiliar ways or hyperactive ways and it can appear distressing), and I still do not know for sure if it’s medical.

Yet, I also am thinking he is learning about every nook and cranny of the house as he used to memorize routes on road trips from school to home or from his old house to the park. While he didn’t get upset if we changed the route, he certainly memorized it. I’m thinking of Dawn Prince Hughes, author (and new friend of mine since I met her in Toronto a couple of years ago — little did she know that I was a HUGE fan of her book beforehand) of Songs of A Gorilla Nation: My Journey Through Autism and the excerpt on herself as a child running around in the same circle in her house. Experiencing this first hand, it’s exhausting for a parent who wants their child to “behave” or settle. Then I have to think again.

“The way I said ’siiiilllverrr doooollllaaarrr’ was only the start of a profound pattern I had throughout childhood saying words and phrases in peculiar, experimental ways and having a complete fascination for words. When I was young, my parents and I often stayed at my mother’s new house, and my favorite uncle lived there also. A hallway ran around the perimeter of the house, past the dining room, the bedrooms, the bathroom, the front door, and through the living room back to the dining room, in a big circle. My favorite game (to the exclusion of all others) was to wait in the dining room for the adults to come up with a word — the more difficult the better — and then I would speed off down the hallway, in the same direction every time, either on my tricycle or on foot, repeating the word over and over.” (pp. 17-18).

Hughes describes then running to each of the rooms saying the word “where the word would absorb the comfort of my grandparent’s bed, their clothing, the beauty of the vanity table, and the smell of cedar drawers…” (p. 18)

Not only have I found Adam enclosed in drawers, but under the bed, and in the deep dark crawl space in our new basement. It takes a lot of effort for me to stay awake and keep an eye on him, as his safety always comes first. His body jerks, he lays on his back and holds his legs. He opens every cupboard, closet and drawer and is still absorbing them — and maybe he can do this better when he can enter them.  Save for the things that he knows — books, his computer that still has the same “Alligator King” from Sesame Street on it, and a cupboard full of crackers and goodies he now knows is his own, he is still disorganized here but is working so hard himself on trying to get organized and calm. Indeed, my boy is making gargantuan efforts.

To this Hughes writes, “I also wanted to keep as many of my own accoutrements as possible the same. This meant that I did not want a new toothbrush, new clothes, new shoes…When I went shopping for clothes with my mother [Hughes describes being afraid of mannequins]…My strategy for survival was to hide inside the clothing racks…the lack of light would calm me down. Hiding was yet another thing that later connected me to my gorilla family — when they went behind the hills to sit or seek out the little caves in the underbrush or rock to be by themselves, I would understand.” (p.21). Similarly, Adam has gone to the books that were the same from his old house. He is not interested yet in new things.

Adam’s grandparents have been around a lot to support him. I believe his grandparents are two of his favorite people (and most consistent). Again this relates so closely to Hughes: “When I was young I stayed with my grandparents on the weekends, and those were among my favorite times. I did feel safe there.” (pp. 21-22). Ask my parents and they’ll likely say that their condo is his “turf.” They have been helpful to Adam and I during this time.

Adam craves lemons during this year of transition. To this, Hughes writes, “I craved salt and would eat it straight from the shaker. I craved burnt matchheads and would suck on them whenever I could find them. I craved Alka Seltzer for its taste and feel….A sound like the thrum of a tumbler full of milkshake when is was tapped [Adam does this all the time] by a spoon or the Westminster chime of the clock would fill me with rapture.”

So I give Adam his lemons. Right now, I’ll buy him a bucketfull, although other people will tell him to “stop eating lemons,” or, “stop doing that.” Sure, I worry about his teeth, or of Adam’s safety in potentially dangerous situations. I’m not saying that we have to allow our kids to do everything, but I have to let him do more than usual and I have to change my behaviour to accommodate it right now, for this is an exceptional situation. I’m always trying to stay one step ahead of Adam to figure out how he can explore safely.

“Most autistic people need order and ritual and will find ways to make order where they feel chaos. So much stimulation streams in, rushing into one’s body without ever being processed: the filters that other people have simply aren’t there. Swimming through the din of the fractured and the unexpected, one feels as if one were drowning in an ocean without predictability, without markers, without a shore. It is like being blinded in the brightness of a keener sight. Autistic people will instinctively reach for order and symmetry; they arrange the spoons on the table, they line up matchsticks, or they rock back and forth, cutting a deluge of stimulation into smaller bits with repetition of their bodies’ movements.” (p. 25).

This is quite an overwhelming statement for me on how Adam may be experiencing his new life situation. It is quite a disability and a sensory overload.

My point is, Adam is adapting as naturally as he can in a home that is entirely new to him. He will thrust his body upside down, will spin, will seek those dark tight spaces and not be able to sleep in his new bed precisely because he has not yet created his order. But he is doing what he needs to do. I, on the other hand, despite knowing this, am having difficulties of my own in managing it. Watching my son in distress distresses me. While this may be natural for Adam, it was re-reading some of Dawn’s excerpts this morning that helped me realize what I’ve learned in the past, but am now experiencing first-hand in a larger way.

I realize that I too am adjusting to my new surroundings as I listen to the house and figure out how I’m supposed to live in it. Things break down and I get frustrated because I am not yet calm and oriented, and this is difficult on both Adam and I.  While I feel guilty much of the time that my own anxiety is not helping Adam, I know too that we are not in control of everything that happens to us. Life happens. We are dealing with it. Like Adam, I am human.

So I was thinking about going back to the ABC’s and I thought of using it as a pun on behavioural-speak because what most of us want to try and do is “fix” the situation or behaviour. Today, I am reminding myself that this needs exploration and time — we’ve only been in our new house for a week! Not only does the alphabet, which Adam loves, stay constant in a world that is always changing, but re-reading Dawn’s book has helped me realize what tumultuous change feels like to an autistic child. It may require more effort on my part now to help him adapt by creating safe ways for him to do so. Adam will reach for his ABC books that always stay the same and he’s doing his part, and I am having this feeling he will eventually make lemonade out of lemons.

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