Estée KlarTo Get To The Other Side

Now I know first hand what it’s like to feel dark inside — when my child is disorganized and appears to be in pain and cannot tell me. These are the toughest moments when a parent feels helpless. Also frustrating are schools that claim they are there to support autistic children but will not take “non verbal” autistic children. Believe me, the conditions out there in order to participate in society are just plain ridiculous and prohibitive, so I’m going to make a strong plea to everyone — INCLUSION IS NECESSARY. Stop pretending to be inclusive to autistic children if they have to “talk and walk” at the same time. It’s not autism-friendly! Argh.

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

I’m not talking about relationships. I’m talking about Adam’s third night at his new home. After letting him explore, be tense, be happy and then settle, he spent his third night in his own bed.

The past two days when I’ve picked Adam up from school he has been running into my arms with a huge grin on his face. I have to admit that his hugs and grins are like Valium — the moment he does that my entire body relaxes. As his mother, I am happy when Adam is happy. Adam is happy when I am happy.

One thing is for sure as I watched his face searching mine this morning and on his way out the door to school is that for Adam, I am home. This is home because I am here. For all the worrying I’ve been doing, it dawns that I am the most important person in Adam’s life. I am the most constant, the most present, although, of course he has many people who also love and support him.

Below is a little snapshot of Adam when he came home from school as I let him relax. It doesn’t show the exuberance that came afterward — and the searching for mommy in order that he could snuggle in the crook of my arm for me to read him his favorite books (Little Ms. Shy and Mr. Quiet, no less). As I watch what Adam does and how he does it; as I pay attention to the books he brings me, he is telling me a whole lot. I say this as I am also skeptically reading about a cuddle drug for autism (Adam is the best cuddler and most affectionate child). It can be frustrating when I am worried about Adam and he cannot communicate everything that’s on his mind. Considering all the issues with autism and communication, it is those moments when I step back and pay attention that I can really appreciate Adam and the many things he has to say. Thank goodness for autistic behaviours for they are telling me so much! Adam is telling me how much he needs me and my support. He is telling me how much he loves me!

We are home.

Here’s the little after-school video:

VID 00039

I am awaiting Adam’s arrival home from his midwinter break with his dad. If you’ve been following my blog, the short story is that today, Adam will sleep for the first time in his new home as his mom and dad have separated.

On Family Day, I eagerly await him. On Valentines Day, I felt his absence, but knowing that he would be away, I arranged my first dinner party with family and friends who have been like family to me. Today, Adam’s grandparents and I will welcome him in a way that I have ritualized home and family for myself.

The year of adjusting to single parenthood has been interesting. I find myself brooding sometimes over stigmas that I have inherited. Things like encoded beliefs that we are more valued if someone finds us valuable, or that perhaps I’m not giving everything Adam deserves by being a single parent — that by being single our children feel the empty hole in their existence and it’s somehow our fault. Of course the emotional sides of these questions can be torture (and I’m sorry to say that I think they are unavoidable at first). Yet since these and other questions have caused me a great amount of pain, I am decoding the stereotypes that society has embedded into me that somehow I am incomplete; that to be a “complete family” means a mother, a father and a brood of children. Religion can be cited as a root cause of such beliefs. In order to protect the “tribe,” the history of the Hebrews – as one example – thought it was important to have many children, and Monty Python , well, they had a comment or two about the Catholics and breeding — but this is not to finger point in any way shape or form. It’s just that religion once had much to do with the way people made families and thought about them. War and the costs of having children also contributed to the decline of birth-rates in addition to families without fathers and brothers. Many events have changed our views about the constitution of the family.

Yet in this “day and age,” there are many kinds of families. In fact about 16% of Canadian children are raised by their mothers alone. While the couple stat is still the largest according to Stats Canada, the numbers are rising for “differently configured” families:

Since 2001, there has been a large increase in one-person households.

The census counted more than three times as many one-person households as households with five or more persons in 2006. Of the 12,437,470 private households, 26.8% were one-person households, while 8.7% were households of five or more persons.

Classroom course-packs are created to explain the different configurations of the family. “Learners will explore how Canadian families have changed over time and examine the factors that contribute to changing family and household structures. They will then create written or illustrated profiles of families and households to describe key trends and changes,” it reads.

I’m thinking about Family Day awaiting Adam to come home, but of also the many friends I have who are single parents now. I think of all the friends I have as well who are only-children (do we attract one another or is it really the sign of the times?). So I walk and I’m thinking about being an only-child, how my dad is an only, adopted child, and how Adam is more or less an only-child. Like my mother, Adam’s half-siblings are so much older than he that my mother can attest that her life was very much like that of an only child. As an only child and as a person who has had to adapt many times over the course of her life, I became more flexible about the people in my life and how I regard them as family. For me, the family is an act of daily creation and that of my own making.

I’m quite certain my yearning to belong made me gravitate to people bigger families, but I can also say it’s an alien experience being there. People in big families don’t always understand that people in small families have to work hard to fit in and we don’t necessarily want to, entirely. We need to be accepted for who we are. While we, in small families, may escape the drudge of the family-guilt trip, the feuds or the politics, I suspect people in larger families don’t understand loneliness (another word that is a taboo and way over-stigmatized, thank you very much) and the need to be alone, while also the special skill we have at creating very close friendships. And yes, we need to be social too. As a quick aside, research into loneliness and solitude notes that people who are only children want and need solitude, and are sometimes lonely. Solitude and loneliness are not the same. If you don’t come from a large family, you just don’t get it completely. Having had the experience, it’s sort of like Christmas and all the presents at the beginning, but there exists an overall lack of understanding by both parties — the big family and the lone ranger — on how to co-exist. The lone-ranger, understanding that nothing in life is forever and certain, doesn’t quite comprehend how the big family member can take it all for granted (and sometimes even envies that!). The lone ranger needs to get close and sometimes big families just don’t have that kind of time. It is only at the point where things fall apart can the lone ranger really use her skills and hold people afloat. The big family is created. The small one keeps creating. One is not better than the other. They just are.

I am very close to my parents and to some of my extended family members. My shape of family may not be traditional, but it exists. The act of creating families is an active experience not exclusive to a couple and procreation. Let’s just say that I don’t take my version of family for granted, and I highly appreciated the bigger one I once belonged to (and of course who are still there and who I still love in my lone-ranger kind of way).

I watch the other single people today as I go on my walk on this chilly February day in Toronto — some are eating alone at restaurant tables as I pass by. I imagine some of them are without children and others are older who perhaps have lost their families, and I think about how most of us are trying to do the best we can, and some of us can feel particularly lonely on a Family Day. Yet I bet that most of these people have friends (who are with their families) and are chit-chatting with the people who have to work today, or maybe with the person at the table next to them. Some other families might be taking great advantage of the holiday and may be spending it together, hopefully not pitying those who are without families (remember, pity stands perilously on the ledge of fear). Like Christmas, contrived holidays can make a lot of people who do not belong to a traditional family, feel like they are missing something. No one should have to feel as if they are missing something!

What I’m happy to see is that all kinds of families are beginning to become more accepted, but we need to discuss the nature of the family even more so that we can support all kinds of families — gay, single, common law, married, separated, extended, and the groups of friends that really, can be more like family than the families we’re born to. Because really, none of us are alone. We are one big family and an important member of mine is about to join me in his new home.

It is Valentines Day. Aside from the red commercial hearts and roses we will buy only because the storefront displays will beckon, I wonder if people will remember fragility. The red hearts may be plastic but the real human ones bear no resemblance.

Today is my official final day in my old home — the home I built with Adam’s father. I did move from it a few days ago — I don’t think leaving precisely on Valentine’s Day would have been easy because my mind tends to brood over such Hallmark things, despite my keen awareness of plasticity. As I said I would in a previous post, I ritualized in my own way. I said goodbye to the rooms, picked out a stone from the backyard. But I couldn’t stay long. It was just too painful once all of my things were gone. My memories are still too recent — Adam and I there snuggling just a few days earlier.

“Someone else lives in the house I thought I’d never leave. And the life I’ve lived in that house, I now speak of in the past tense….The keys now belong to someone else. I can’t open that door anymore, and the place beyond it is now as inaccessible to me as all the life I’ve lived there, retrievable only in photographs, story and memory. Still, while I lived in that house it seemed that my life would continue there forever, that it was as substantial as the sofa I settled into in my study with a cup of tea at the end of each day.” (Excerpted from Louise DeSalvo’s On Moving: a Writer’s Meditation on New Houses, Old Haunts And Finding Home Again.)

I created The Autism Acceptance Project in that study. Now, I’ve created a new study where you see me sitting now. I am moving on. Aside from organizing a few things, I am trying to settle in my new home. I feel like maybe I can get back to deadlines, TAAProject and my writing. This evening, my friends and family will gather in my new dining room to help me toast a another new journey in another new home. Again, I believe rituals are so important.

I await Adam to return on Monday afternoon from his mid-winter break so I can help him adjust here. We saw the neurologist last week who believes his spasms have more to do with transitions than anything else. Yet, to be prudent, he must still have the EEG to ensure this isn’t something biological. My suspicion, however, is that Adam has been just as stressed as I have been. According to that infamous “top-life stresses” list, moving and divorce are right up there. Dash in a few other things over the past two years and the plate, as they say, has been pretty full. Being in the new house and taking it in for a few days on my own helps me calm with it, and I need to be calm for Adam. He feels and takes on every emotion I have. As his mother, it’s hard not to feel guilty, but I try to fend that off as it is such a waste of precious energy. I have to teach Adam many things two of which; 1) I am human and, 2) that the only reason we are here is to make the best of what we have. I believe these are good things to teach autistic children — the children we so often say need consistency and structure. While I believe that to be so true, it’s not always the way life goes.

Saying that, I’ve also learned an important lesson on the fragility of the heart and of the roots we think we build. In fact, I think the lesson I was meant to learn was that of impermanence. We all want our children to feel stable as it is an important factor in healthy growth, but I’m beginning to believe that an important gift we can give to our children is to also teach about how things change. “Paint peels, plaster cracks, and gardens, of course, are the most ephemeral constructions of all.” (Louse DeSalvo p. 149). I know we are supposed to keep structure in our children’s lives — particularly autistic children who are so prone to anxiety — but the fact of the matter is that all of life is outside of our control. We take what we are given and polish it. And it’s definitely okay to cherish it too.

“The gleam of a loved house lasts only as long as he who loves it can keep polishing.” (p.149) This goes for all the people we love too.

Happy Valentines Day.

This post will be brief as I am living in the moment of moving homes. Adam came to our new home today before he goes on a mid-winter break with his dad. His body-jerks have returned and he cries in his new room. “Are you scared,” I ask.

“Are you scared?” he echoes back with then a slight delay. “Scared,” he says forcefully.

We have made numerous visits to the home, but because Adam can understand what he cannot express fluidly with words, he is reacting. It is strange. He knows the move is now imminent. He is experiencing the stress that other children experience. He has experienced so much.

It brings me back to the time when I was six years old and my parents moved homes. I remember when they looked at it, when they purchased it — my dad and I put the “sold” sign on the front yard. So new was the house, the lawn was not yet in and we perched the sign in the dirt. Dad made a big deal out of it, I remember that much. He was proud. It’s amazing what impressions we retain from out childhoods. It wasn’t much longer after that — I returned from a weekend with my grandparents to sleep (all of a sudden) in my new home. I believe there was even a stuffed animal waiting for me in a newly erected brass mailbox by the front door. It was summer. The “welcome committee” was ready to do its job and make me feel right at home. That committee was my parents.

I remember that arrival and how strange it was, but I’ve lost the memory of sleeping there my first night. I’m certain my extremely attentive and loving mother did everything she could to make me feel I was at home. Yet, it didn’t feel quite right. I couldn’t ride my bike around the house in my old neighbourhood where a garden was planted and grass was laid and my good pals were gone (I was particularly close to the boys I punched in the stomach — it wasn’t my idea… it was my father’s. He tried to make me into a tough girl and STILL relays that story proudly to anyone who will listen…kind of embarrassing at my age). Nope, they were all gone and all I had was the bike and the dirt for my early introduction. The plumbing still wasn’t working in the block so new, that we had to use the model home down the street to take a pee. Indeed, that was a strange feeling.

My parents are still around and are extremely loving grandparents to my son, not to mention incredibly supportive of their daughter who is now not only a single mother, but also their only-child having another life “adjustment.” Let’s just say that they mean the world to me and I’m certain to Adam. On Monday, when Adam returns home from his break with his dad, those same grandparents will be the welcoming committee to his new home that he will settle into with mom.

Adam is only a year or so older than I was when I made the major move. I try to appreciate how strange this all feels on top of parents who are no longer together. I think of how confusing that must be; how stressful sometimes, and because Adam is autistic, he manifests that stress in physical behaviour. It is the only outlet he has. Even though we are all doing our best to help him along, Adam has been expressing how he feels about the matter.

Expressing boldly without words.

I now play a video I made with Adam’s grand-dad a few years ago. I love the little guy more than words can say. This is a look backwards with gratitude while also hoping the future will bring us both peace.

Curiousity is a wonderful human trait. Adam is autistic and while he needs some regularity and structure and familiar environments, he also needs to explore new ones. He is curious. He likes to explore — in his own time — new foods, new things, new places. I pride myself on having traveled with Adam even when it wasn’t easy to travel with him. I do it with him as a single parent now, and his dad and I did it together when we were married. While I was tentative in Adam’s early years of flying him as far as Africa, I do not rule it out as he grows older. Just because Adam is autistic does not mean that he should not see the world. It’s how we orchestrate the process and itinerary that’s important. As a parent, I know I also have to be prepared for anything. Too many expectations can foil the best of plans.

We’ve had great flights and not-so-great-flights. I can never predict or prepare enough. I have learned from Adam to give ourselves plenty of time, to pack his bag with his favorite toys, foods, and DVD’s. I generally know that early morning flights seem to be easier than mid-to-late afternoon flights, although like everything, there are exceptions to that rule. Adam can be happy and calm as I “work” the flight with him. As a parent of an autistic child, I have learned to stay on top of Adam’s needs before any anxiety is triggered, for once triggered, it can be difficult to calm down. So as a parent, I don’t get to read the paper or a good book when I’m on a flight with Adam, but I still believe the effort is worth it. Travel, like autism and life, is a journey we cannot perfect. We cannot always predict how bumpy the flight may be. We can’t predict delays that are a normal part of travel. We can’t predict the mood our child might be in as much as we cannot predict our own. We can, however, try to prepare ourselves and do our best to keep calm in challenging circumstances.

I’m talking about travel because not only do I thrive on it myself, but as a single mom I look forward to exploring the world with my autistic son. We’ve been to Alaska, we’ve been to the U.S. and the Caribbean. I am looking forward to taking Adam to Italy where I have a feeling he will love it for the sights, the gentle sounds of a murmuring town square, the Gelato, tomatoes and salami — not to to mention the flocks of pigeons he can chase and the magnificent art. It’s my dream to take Adam abroad. But it’s not my dream to endure a difficult flight. It’s my problem, I know. I don’t like to see Adam suffer. I think I have to just get things organized (like rent one place and make it our “home base” for several weeks). I am admittedly tentative about the overnight flight to Europe. Everyone tells me that this should be the easiest because children “can sleep on an overnight flight.” They don’t know my Adam. I remember that twelve-hour day from Alaska back to Toronto where Adam was beside himself. We learned that Gravol didn’t put him to sleep as it sometimes does for other children. I’ve learned that Chlorohydrate doesn’t settle Adam before an EEG. I’ve learned that Melatonin won’t relax him on a flight, either. Adam, my Adam, is my prize-fighter. If Adam is anxious and does not want to sleep, giving him sedatives may have the opposite effect. He may metabolize medication differently. Or, he just too anxious, period.

I will eventually book that trip to Italy at some point, deal with my fears and see what happens. I think I’m a well-prepared mom and it’s the times when I’m most prepared that I find easiest for both Adam and I. I’ve found some good suggestions on traveling with the autistic child (see below) that others may find useful and I’ve employed about all of these strategies. But I’ve not yet traveled afar with the little one and I notice that no one else has written a thing on the Transatlantic flight and the autistic child. I assume (hope, really) that some autistic adults may have some suggestions on helping a prize sleep-fighter enjoy his mid-air travels. Like so much information we seek as parents of autistic children, there simply isn’t enough to support us on our travels in life and abroad.

Travel Tip Sites:
Autism Family Travel
Coping With Autism (on Vacation)
How To Prepare For Traveling With A Child With Autism
Caring for Kids — Air Travel

I feel manipulated. Not by a person, but by the many messages I am getting about autism and high divorce rates. Imagine me now looking through new eyes. Adam’s dad and I have been separated for little over a year now. Last night on TVO aired Autism The Musical and the BBC production of The Autism Puzzle (the latter which I found to be a good documentary…it is the second time I’ve watched it) and today on CNN (again) I am confronted with a deluge of autism media and I am sitting in my bed, alone, weeping, laughing at myself — weeping again. I might look to an outsider like Meg Ryan in some Hollywood romantic comedy. It’s not that I didn’t appreciate Autism The Musical. It’s just that I have to think critically of how a general public might view some of the very real comments — so real they made me weep. Take a look at this story before continuing to read:

Lisa Jo Rudy of About.com on all things autism (an autism mom herself) also recollects about Adam’s dad (from the movie — not my Adam):“Adam’s dad, now estranged from his mom, is bitter because of his wife’s obsession with Adam’s autism. Mom, meanwhile, spins out of control when she thinks her son’s cello solo will be cut from the final musical production.”Adam’s dad (in the film) suggests that he believes all autism moms suffer divorce because they are scrounging every ounce of information for the benefit of the child. Adam’s mom and dad are still together during the filming and the mom discusses how dad has had a long-standing affair, and she is clearly overstressed and bitter and I understand all of that.

As I’ve said, I’m looking through different eyes now. Yes, Adam didn’t sleep and I was so grossly sleep deprived. Yes, I was obsessed with finding out every ounce of information in a world that doesn’t accept autism. As a mother who loves their child (or a father — think Robert Hughes, Ralph Savarese among hundreds of other incredibly dedicated dads), this was the obvious choice. As an educated person, I read and study…and go back to university to get a degree in Critical Disability Studies. It is my way of dealing with things. I have a need to help Adam in this world that still does not offer enough programs, services, care, respect and inclusion. And I’m choosing to accept the choice with open arms. I’m choosing to move forward and continue learning from all the lessons on this autism journey.

Truth about divorce lies somewhere between anecdote and statistics. While I have compassion and I feel that this is so real for so many families, I have to question if we are all being manipulated. I am thinking of Jenny McCarthy and her story of feeling alone in her marriage with her autistic child. I think many parents feel alone when they are researching and searching for scarce programs — indeed there is a feeling of isolation that sometimes even extended family members will never understand. I remember the Autism Everyday Video and how the number “eighty percent of all autism marriages end in divorce” was thrown out as a matter of fact, rather than what it is — speculation. I spoke out about the “wanting to drive off the George Washington bridge” with the autistic child comment because it was used in a campaign to raise money for autism by making autism look terrible, not because I don’t believe or do not have compassion for the moments when some parent may be in a moment of despair. It’s all real, you see. The divorce is real too. Some partners do not want to deal with the responsibilities of raising children — particularly disabled children. Some partners do not leave just because of autism. The problem with using these stories in autism promotion videos is that it is used to sway our feelings about autistic people in particular. It uses autistic people as a crutch for the gamut of natural human emotion. People with non-disabled children also get divorced. People with non-disabled children also do unspeakable acts to their children. It is simply not fair to blame autism or disability as the cause for despair and divorce.

There may be some truth to divorce and disability, but statistics don’t necessarily agree. Apparently divorce rates, according to Kristina Chew’s article, are down and I’m particularly concerned when disability is used as the sole reason for a divorce. Kristina also writes: “Citing autism as the reason for a marriage failing can be seen as yet another reason for saying why autism is so awful. Taking care of Charlie is a privilege but it is not always easy. Childcare arrangements are a constant juggling act for Jim and me and we tend always to think of Charlie’s needs first, and of each other’s after that. We both agree that it should be this way. Jim and I would much prefer living closer to New York City due to our jobs but Charlie’s education comes first. We left the house that we planned to live in for 30 years in order that Charlie could have the right school placement. (And until this September we were living with my in-laws, which was very, if not too, interesting at times.) Jim and I have made many of our choices based on ‘what Charlie needs’ rather than on what would be best for the two of us and I do hope that, ultimately this will be best for the three of us.”

It doesn’t matter what stressors are involved in marriage — the more there are, the more vulnerable a marriage becomes. Some couples manage to work together, some do not. Sometimes, when the marriage is done and some of the stressors are gone, parents become better at working together. Sometimes challenges bring couples closer together. There is no magic formula and there are no right or wrong answers. Is raising a child with a disability more challenging? Absolutely. Should it be blamed for divorce? No.

What we need along with the compassion is to look at our sorry weeping selves in the mirror to ask analytical questions. Who is producing the video? Is it a real story or is a fundraising video? What is it asking us to believe? Does it pull on our heart-strings to sell copies? Telling truth means that the conclusions are not necessarily clear — at least not for public consumption. I for one, will not blame autism or Adam for my marital situation, even when day-to-day life is not always easy. In her article Genie In A Bottle, Shelley Hendrix in HuffPo discusses divorce, emotion and her autistic son: “For a very simple reason over the last six years, I have clung to the hope that my son Liam was insulated from the emotional distress that can envelope a child when their parents divorce. He has autism.

For once, I had hoped that his exceptionality was a perk, protecting his innocence and preserving his heart. I was wrong. Very, very wrong. With his nonverbal days behind him and his growing conversational skills he can express himself, just like any other child that experiences divorce.

His message this summer? He desperately misses the unified family that he once had. His questions and comments mirror the conversations I have had with his younger sister throughout the years. Is it his fault? Why can’t we get back together? Why did you get a divorce? Did you love daddy? Did he love you?.”

I worry like any other parent during a time of divorce. I too want to protect Adam, as all children of divorce seem to do, from blaming himself. I am particularly aware of how he manifests anxiety and worry that it’s because of divorce — and as autistic children are not unaffected, I must assume that there are days when his head wonders what the heck has happened. One day, like Liam, he may be able to tell me so, and I don’t think anyone should underestimate the effects of divorce on the autistic child just because that child seems happy all the time, or cannot talk, or does not appear to be aware of what’s going on.

Two adults are responsible for making it (or not) and society is also responsible for supporting marriage and families — particularly families who have more on their plates because of the lack of community supports. (And uh hum — who is going to want to provide supports when people — as the woman interviewed – discuss autism as worse than getting a root canal?!) Two divorced adults are also responsible for making transitions in life for the autistic child as smooth as possible, while respecting the child’s need to express their concerns which are manifested by anxiety (and we know as autism parents that anxiety doesn’t always look anxious, but also hyper). Adults are responsible for taking the responsibility. There is no easy answer for our lives in marriage or divorce; no predictions.

The work I must do for Adam still sits in front of me. The assistance he may require in his adult years is likely. I look at it this way: when a marriage ends there are new opportunities — to build strength and hopefully cooperation. Right now, as I myself am going through this new transition I have yet another opportunity to look at pity in the eye and step forward proudly with my autistic child.

Of course I would not be human if I did not wonder if more support, programs and information would have lessened the time I spent assisting Adam, coordinating his teams, his school requirements, his IEP, his communication devices and needs, playgroups… Would I have done things differently if there was more support out there? If I had had more sleep? This is a question I cannot yet answer. All I can say for now is that it was a choice grown from love and devotion. Choices have consequences and rewards. I don’t blame autism. I don’t blame a person. It’s what was meant to happen. The work we do today, I believe, may help others tomorrow. Adam, for one, will know that he is valued and that I valued the time I was married to his father. I value the lessons we continue to learn and the many joys and struggles on our journey.

I started the Joy of Autism blog in 2005 with the support of my then-husband who told me to “start a blog” not unlike Julia’s husband in Julia and Julia. He apparently believed that, like Julia, I “have thoughts.” :) He supported the work I did for The Autism Acceptance Project. But life, as they say, is “complicated.” Here we are. Who would believe that I think that even all of this is a gift?

I do. Now, on with the future.

I always knew Adam was a tough little egg. As I had written earlier today, he defied the sleep aid in the hospital that would knock, likely, a typical kid on their back. Not my Adam; he was fighting this sleep. Maybe he was determined to defy any hospital hand after the weekend. No electrode would be placed on his adorable little autie head this morning.

I have to admit, this single mom is pooped. A couple of canceled events — of course I was going to cancel them and do everything and anything for the little man — all the worry, sleepless nights and all that social deprivation! We met with unknowledgable Emergency Room staff (Did I say that? I really wanted to use the word graceless), I slept beside him in the pediatric ward for the first time since he was born, I orchestrated (felt more like moving mountains) to get this EEG this week, instead of in February. And NADA. Anyone have a Grey Goose on ice?

Yet, just as it always goes when life seems to feel a little dark (it is December after all), I decide tonight that Adam, who has of late not been sitting very still or sleeping very much, will watch E.T. with me this evening. Movie watching can be a little precarious with Adam. He has been known to leave dark, hushed theatres mid-performance. I think the movies he has sat through from start-to-finish, so far, have been Happy Feet, WALL-E, surprisingly, Charlotte’s Web and that silly one with the hamsters playing 007 in 3-D, whatever that was. At home where he is allowed to roam freely to the kitchen, get his toys, his books, movie-watching can be next to impossible. So sleep deprived? Too bad. There is usually no rest in this house even when we are weary.

I am happy to report that tonight, I managed to keep him with me on the couch — many a wriggle and a wrestle, a salty cracker or two. Okay, maybe three. When he saw E.T. and that typing device, I told him to look. He was, even though he would also wriggle, look at a book, eat a cracker, a banana, a glass of water, and peek often in between. “Look at Elliot,” I would urge, pointing my finger hoping for that good old joint attention. “Look, look at E.T.! Isn’t he cute,” Adam looked at me with a smile, which, if you really had seen Adam’s pain the past few days was lovely, relieving and made me appreciate every moment like this we’ve EVER had. His cheeks seemed fuller, maybe because his colour came back. As he rubbed his soft head into my face, I could still detect the whiff of medicinal smell from the gel they had placed on his scalp. He rubbed his cheeks back and forth against mine for the feel of it, like Eskimo kisses and I laughed. It felt like a bucket of soft feathers pouring over me, but really, it was love. He seemed to enjoy my antics more than the movie, or maybe he just liked it when mom sat there with him on the couch, eating crackers, drinking water, and fun-wrestling in my arms.

“Home, home, home,” he said at that point in the movie when the music billows, the volume rises, and the story ends. Home indeed. There’s no place like it.

One of the most difficult things about being a single parent is letting go. Not only is it difficult for me to be without Adam some nights, but I do worry so often how he feels about missing mom or dad when he is not with us as we were. I know, many families get divorced and the children do okay. But I am not from a family of divorce and I spend most days wondering how children cope (I had four step-children as well so I was always thinking about how they were coping) and it all leaves me feeling a little melancholy. I hear that families are co-parenting successfully, whatever that really means — some “business” relationship where the couple only speaks about the children. But it’s never the same. That daily interaction where the details we took for granted are often the details that never get discussed. Maybe sometimes for some families it’s better. And for some it’s worse. And for others still, life just goes on and we make it the best we can because families, these days, seem to come in all shapes and sizes.

This song says absolutely everything about how I feel when Adam is not with me, and I do not believe that even as time smooths the hard edges of life that I will ever be used to a house with an empty bed. Thankfully, Adam has a loving family with grandparents and a mom and dad who love him so very much. So at least both mom and dad can hope that Adam will have sweet dreams because he will always know how much we love him:

How did I manage it, I think as I sit in an assessment for Adam today for a new AAC device. I want him to be eligible for government funding for it. I arrive at his school tired and disheveled in my leggings and baggy sweater that I rushed to put on, and my hair is whisked into something I can’t quite call a pony tail or a bun. Adam has not been sleeping the past couple of nights and I wonder how he can seem so much more energized than me. When I arrive he is reading and answering comprehension questions and he is doing so well sitting studiously, pointing to correct answers, his cherub voice affirming his choice. I sit low on a child’s chair watching from the right.

How did I manage to go through a separation and do all that and heal and still be on top of everything for Adam, I am thinking without coffee, watching my child work so well with the same sleep deprivation.

You see, I’m quite dumbfounded thinking how the year sort of just whooshed by and I was in a daze. I think when people go through separation and divorce, it is typical to heal for a year or two, and indeed I’ve felt sort of paralyzed. I remember thanking everyone around me profusely for their incredible support for the first eight months. I learned the importance of reaching out, and I sit now watching, less nervous and anxious than a few years ago when we would go through the same assessments.

When I look back on the past year, I can’t help marveling at Adam during his assessment today and think about every evening when he comes home from school when he reads to me about what he’s accomplished at school. He has learned to read out loud. He has learned to become an independent typist, and now he is drawing like never before. Yes, we have our challenges too — he is more rebellious these days, knowing what he wants, not unlike many other seven-year-olds.

Sometimes I wonder if children also rise to the occasion, and I believe Adam has done just that. I’m reading my blog The Joy of Autism – the older version before it was mistakenly taken down to reminisce. As I watch Adam now and process the year that has passed, I sense a great transformation that is happening in both of us. I see how I’ve evolved and softened, wanting to change direction a bit from the way I wrote and blogged in previous years. I see how Adam wants to be mommy’s big boy and how he makes an extra effort. Hindsight is not just 20/20 — it makes me appreciate just how much we’ve actually accomplished, and how much of a team we’ve become.

It’s hard for me to write this. I’ve got butterflies like a person who is trying to get back out there, trying to re-launch and I know I’m quivering and teetering. Yet today I sit even more diligently than ever, writing my fifteen pages a week. Adam and I launch into projects like we never have before.

I guess we managed.

“Barely awake at the breakfast table, I let precious time go by…”

Hovering over the small stainless frying pan I cook his eggs, sunny side up. He always likes them sunny side up. I think it started when I started making them into “Baby Einstein Eggs,” I would call them where I would place his favorite vegetables and transform two eggs into eyes, then glasses then thinly sliced peppers into cow-licked hair.

“Baby Einstein Eggs,” he said back deliberately, his voice still sweet and squeaky with staccato rhythmn as the words were hard to say. I watched him look at the eggs with such delight, moving his head closer and then back again like the humming bird I always call him, his hands flapping just as fast. I remember now because the eggs have lost their appeal. When did it happen?

He goes to the door now on his own in the morning. He gets his shoes and puts them on before I ask him to. He has even taken to putting on his coat, ready to start his day. Ready to go outside before I am ready. Ready to leave. His assistant arrives to take him to school. He grabs his lunch bag on his own, no need to remind this day. He trots out the door.

“Good-bye, Adam,” I say, hoping the desperation is hidden behind my eyes. “Have a nice day. I love you!” He turns and smiles at me.

“Bye-bye, yes.” The yes is the punctuation mark. It’s the you want me to say good-bye to you so here it is, kind of yes that has become his signature. It’s the way I know he acknowledges that he must say the same thing back, or that he’s heard me. He doesn’t use the yes when it’s a sentence all of his own making. Those sentences are few, but so precious.

When I pick him up or when he arrives home by another, he is so happy to see me and it makes me want to sing. I am relieved to see him. He grabs me and hugs me hard. When he leaves — now to school, to his dad — or later to his life or maybe even his wife, it will be exactly the same.  He grows differently but also like any other. They change, they become independent or maybe even quasi-so, but things do change. Every morning seems the same. I wake. I’m tired. Barely awake every morning, I try to remember never to forget. For the moments, as they should, are slipping through my fingers all the time.

We are free to view life from many possible angles.

I think I am making my way into singledom with grace. Those of you who have followed this blog might have noticed some soul searching buried within some of these posts. A surgery, a husband leaving, and a vast new expanse of what-ifs and a nasty bit of weight gain (okay, that’s the vanity part of me…I gain weight when I’m down as opposed to you lucky ones that lose piles of it), and I finally got to another tipping point — my life has to go on and it may even get a lot better.

I did the sleeping thing. The “don’t want to get out of bed” thing. I did the crying and the grieving. These are the things that one does when a relationship has been an important part of your life.  I did what I had to do until I realized that I had to put a time limit on it. If all of our pain and suffering is created by how we view our present circumstances, I thought I’d better change the view. So I decided to take my first trip alone since my separation. And it was life-changing. Funny how getting out of the confines of your daily existence pats you on the shoulder to remind you again of who you really are. I quite enjoyed traveling on my own, meeting really nice people on my recent biking trip from Prague to Vienna. The flight was wonderful on Austrian Air. It exceeded my expectations as a chef was on board and served very good food. I was excited to use my German again –  I hadn’t used it in over fourteen years which was the last time I spent living in Germany. At first, I missed sitting there next to my husband as this symbolized a turning point for me. I briefly wished he was there to share this with me, as we had traveled so much together and he was a good travel partner. But I soon eased in to this new reality that this would be my first major European trip on my own again just as before I met him. I relaxed into my seat and decided to let the ride just take me along. I had been studying in Europe before Henry. I was learning new languages. I had many friends from around the world. I sensed I would be coming full circle.

I noted how I was adapting to my days on my own, and to meeting new people with ease. I recognized that I could ride at my own pace without having to slow down or keep up with my partner. This Es-”tella” got her cadence back. I felt vivacious and social. If you’ve seen the movie “How Stella Got Her Groove Back,” you’ll get it.  Divorce can make you realize how you may have lost yourself in the process of giving yourself up a little too much. No one should have to go that far, but more often than not, we do without being conscious of it. Sometimes we do it because we believe that’s what love is. The lesson may be in the need to keep track of ourselves as partners and individuals within a marriage — to become conscious and honest about who we are and what we want and be accepted for it. I think partners need to regularly check in with one another and definitely share some major interests. Aside from my mini post-divorce evaluation here, I have to laugh at some of the things I do when I’m on a trip alone — taking pictures can be a little tough. It’s hard to get the background in with your face close up to the lens which tends to expand your face like a blowfish.

But hey, I had to have a picture to prove I was there!  The trip reminded me of the pace of life, the ups and the downs. But most of all, it introduced me again to the self that got lost because I never fit into the box I was asked to fit into (except for the distorted picture frame…okay…there are advantages of having a partner too!).

Let me get to my metaphorical point: I began my first cycle day with a crash. Yep, day one I had a whole two-minute ride! As I traveled up a steep climb, not able to figure out the new-ish gears (duh me — I couldn’t locate them as they were at the front and the back of the handle), and my feet were strapped in so I couldn’t get them out quickly enough. I could not change gears and I lost control of the bike and fell into a bit of a long ditch….on and over my head. As I fell over and over again, it was one of those circumstances that you can see yourself and do nothing about it. I thought I was screaming on the way down, but a Czech lady (the only person who spoke English that day in Central Bohemia), told me she could barely hear me at all asking for help. I was in a state of shock and enough pain (I am still feeling it to this day two weeks later) to warrant a 911 call and a trip to a Bohemian hospital.

A testament to Czech hospitality, the woman offered to stay with me the entire day to translate to the doctors when she was really supposed to be spending vacation time camping with her sons. As I lay in the ambulance, all muddied and covered in grass, I was wondering why this was happening to me after such a harsh two years. I was really ready to feel exceptionally sorry for myself. I mean, this was to be the “life-changing” trip and here I was down again. The only person I could think of was Adam, for if I had really hurt myself, I would have potentially made him suffer too. Luckily, after it was confirmed I was not likely to be a Natasha Richardson case, we began to laugh and act silly. So a crash can be a blessing. I made a new Czech friend, renewed my faith in humanity (and my resilience),  and got to know my guide, Darius, for about six hours. I became close to two complete strangers.

And it made sense that we became so close –  a brusque Czech nurse stripped me down virtually naked while men were walking in and out of the examination room. When we asked for a gown, the nurse literally threw a small square of  paper towel over my groin. I mean, you just cannot take your self too seriously when there (seem to be)  no other options.

I had to rest the following day, but I still wanted to get to know my new bike-mates, so I joined them for lunch at a farm. I was anxious to get back in the saddle, so the day after, I did just that. There was nothing that was going to stop me now. I rode and rode at such a pace and made it past the town square. At that point, as I was riding down the highway back towards Prague and felt something was amiss. I figured our guides likely wouldn’t want us to be taking the traffic route. After failed attempts to find my way, I called Raphael and asked him where I was. He told me to make it back to the square and at this point, I took enough of a break for this shot. Yet, I enjoyed getting lost. I felt satisfied for having tried to find my way, discovering routes I would not have seen otherwise. So, while no one ever gets lost on a straight road, no one might ever discover something interesting from one’s mistakes, either.

It began to pour rain on us but I wasn’t planning on stopping soon. I was motivated to test my will, my strength, and dag-nam-it, to jump start my twenty pound weight loss (an added benefit I hoped) to shed the guard and vulnerability that became my new weight. I think it’s significant to talk about this for many women. It becomes not only a health issue, and not just a vanity issue, but an issue of what is happening to us on the inside. Some of us pack it on like a shield for the blows we are taking. Sometimes we have no energy to spare when so much of it is being spend on the shock and healing. Yet now, life is about a lot of shedding to find the woman that has been buried and guarded for a while now. Nine months after separation, it is time for a rebirth.

Our group rode the next day in Austria toward the Wachau region. It was stunningly beautiful and a clear day. The hills were very much alive in my lungs as I realized that when I returned back to Toronto, I would have some serious hill-training to do. I made it up the hills, but this is when the stronger cyclists could really catch up to me and where I would fall behind. I’ve had my heart-rate measured many times and I’m lucky that I have an athletes heart (my resting heart rate is just under 60 beats per minute). So I guess I’m telling myself that really, I’m all out of excuses.

I cut my hair before this trip. I don’t know why because I actually prefer it long — more like this: 

I think it was also a part of my shedding. Separation is a good time to re-evaluate everything on your plate. I’ve looked at all the jobs I’ve had to do, and all the stress to determine that the priorities are making sure Adam is okay, managing his programs, team and education as well as focusing on keeping myself healthy and working on that which is important to me. The rest has to drop away in order to do a good job at the things I believe to be important right now. The shedding is for health and well-being. This is not just about being attractive, but it’s about feeling the best I can about myself. This is why cycling was exceptional for me: it enabled me to challenge myself in a way that had meaning beyond just aesthetics.  This is why I wonder why I’ve never taken an active vacation before, and this will surely not be the last time. I’m already looking into hiking this summer, and I’m cycling every weekend now just outside of Toronto.

It has given me more energy for Adam as well. I can’t say enough as a divorced mother, how the guilt can keep creeping in: am I doing enough for him; am I keeping up with his curriculum; am I on top of his team; is he getting the best from me? The sense of obligation for a child, and a special needs child are immense. For seven years, I’ve spent my life completely devoted to my wonderful little boy. And feeling down and out the past nine months, I realize that Adam needs and deserves a strong and happy mother. I may take a bit more time for myself now, but in the end this will benefit him. Already, I’ve taken him cycling. Every day he asks to use his bike. As I become more active, I envision Adam become more so as well. My goal is that Adam can one day bike with me and participate more and more with mom in the activities we can enjoy and share together.

I think it is no coincidence that many men and women who have ended their long-term relationships must take a life-changing trip. Frances Mayes bought a property in Tuscany for heaven’s sake! While I can’t just take off and leave Adam to buy a new property in another country, there is no reason not to expand my own, as well as Adam’s horizons. The feeling of expanding is liberating. Life is not just about Toronto, Torontonians (I have a few things to say about the city I was born in for the people don’t exactly have the “gemutlichkeit” I am more comfortable with). Life that is out there and can put the back here into a clearer and more positive perspective.

When we reached Vienna all sweaty from a bike ride on a 35 degree celsius day, we toured the city a bit and reached the Goddess of Wisdom which I ran right up to for a photo opp, taken my a fellow single lady from Edmonton. I realized that maybe I have finally learned what  others might learn earlier, and others still may never learn at all — that wisdom comes from experience and that the way we succeed in life is by how we adapt and respond to the life that happens to us. We can choose to respond negatively or positively to everything that happens to us. For it happens all right — in sickness, health, disability, divorce, and so much more. These in and of themselves are not failures and tragedies. The tragedy is if we never learn to adapt at all. “Life is not the way it’s supposed to be, it’s the way it is,” says Virginia Satir. “The way you cope is what makes the difference.”

So thanks to my guides, my new bike friends — the incredibly kind people who made my journey something I will never forget.

It is no secret that divorce is overwhelming. Add to that being ill, moving, or receiving that “autism diagnosis” about five years ago has made my recent life path rather bumpy — a list of to-do’s and goals and I’m getting tired. If living our lives “authentically” (a popular word used so much today) is a goal, I might suggest that the way we live is anything but.

As a mother of a special needs child, there is more work as our children depend on us for longer periods of time. I’ve devoted my life to Adam, and maybe even garnered some of my identity from that. Yet, how can parents, especially those of us who strive to seek acceptance and advancement for our children in society create a balance? How can I still give to Adam all that I can, be the good parent, AND take care of my own needs, AND contribute to the world?

I may have found part of the answer in the bigger picture. The self-help books are okay, but they all seem a little saccharine. Sure, there are some good tid-bits of advice here and there — perhaps we all need to read them when we are in moments when the waters are just too deep.

As friendships dissolve (a natural consequence in divorce is losing “couples friends”), and I think I’ve gone as lonely as I can go, the insights and work of others have held me up.  It keeps me steady. It enables me to think about the future that is greater than my own issues, but also not whole without them, and that beckons me to become more a part of it.

As any parent — special needs or not — we are all familiar with the daily to-do lists and tasks that keep us running but make us feel empty. What have we achieved? Do we do our daily tasks with a level of intention that keeps us engaged in life and with others or are we just racing through? What is the goal for Adam and I, if not for all of us? That is the challenge we all face and I believe the answer is in slowing down and doing things with greater deliberation.

Also,  part of the answer lies in the communities we build — not from raping the land and a town with money-making developments, but in perhaps growing a little less and creating environments where humanity thrives.  Were we to have beautiful towns, places to walk to get our groceries from local farmers, events nearby we didn’t have to drive to, and neighbourhoods of children gathering to play again, rather than establishing “play-dates” weeks in advance, I believe we would all be less lonely and we would fulfill many goals we have as an autistic community.  Isn’t this what we want for our autistic children most of all? To be included, happy and less lonely? To be contributing members in our communities? How can we create this if we barely get to know our neighbours?

We all have that nagging feeling, don’t we, that we are all less connected to each other than we want to be? Fine, we in the autism community have connected globally via the Internet, but where do we go in our own towns?  Facebook, among other sites, tries in allowing people to advertise events. But what of just going out… unplanned? How many calls do I receive of parents with autistic children (now adults) who are desperately trying to find a group to belong to? And what must I do? I have to think of all the organizations that have formally created groups with specific meeting times that individuals must drive to. By the time we get this far, it already sounds like too much effort.

As I look at the work of Edward Burtynsky in Manufactured Landscapes, I was taken aback by the scale of growth and efficiency at the cost of humanity. His photographs of urban and industrial landscapes, he seeks not to judge our economic growth and efficiency, for he captures a sublime and repetitive beauty in that which we would otherwise call ugly, but he tries to raise our consciousness in how we are living — tenuously and on the brink. It’s as if he is saying, “okay, we’ve reached this point and now we have to change,” not as punitive, but as an empowering statement. We have created manufactured landscapes of such scope and scale that surpasses the building of the pyramids. For that we must recognize what we are capable of!!  Now, he asks through his work, where or what is the humanity of our economy?

In The Geography of Bliss and Deep Economy, both authors use the study to point out that “growth is no longer making us happy…Though our economy has been growing, most of us have relatively little to show for it.” (Deep Economy, p. 11). If every action in our economy burns fossil fuel, it also burns human energy. And the costs are apparent in the desolate backgrounds of Chinese culture, and the faces of a tired Chinese people — the fastest growing population and nation in the world.

So you might ask: What does economics have to do with raising children and marriage?

Absolutely everything.

“In 1946, the United States was the happiest country among four advanced economies; thirty years later, it was eighth among eleven advanced countries; a decade after that it ranked tenth among twenty-three nations, many of them from the third world. There have been steady decreases in the percentage of Americans who say that their marriages are happy, that they are satisfied with their jobs, that they find a great deal of pleasure in the way they live.” (Deep Economy, p. 35)

As I digest my life up to this point, and the general dissatisfaction of our society, I must consider how connected all of this is, like Indra’s Web. Divorce may be overwhelming, as are all the current problems in our world, but perhaps the answer in building a greater sense of satisfaction in our lives by creating more simplicity — shedding the complexity and just being honest with ourselves that we can no longer do things the same way as we used to. It involves, as in divorce, letting go.

It is no surprise to me that there is a strong resurgence of farmer’s markets — there is one I discovered in a nearby artist colony that I now take Adam to on Saturday mornings and it has become a real gathering place.Adam and I like to go out, ride the bike, pick up groceries on foot as much as we can, and we can be more aware of the energy we burn. The more attention and care we bring into our lives at every level, our quality of life improves. So this not only stands for the average family or person, but also for the special needs family, for what we need most is connection with others.

I think about the Supermom I was called to become when I was a young girl (I went to a Catholic all-girls school which further pressed me):  “You can bring home the bacon; fry it up in a pan; and never, never, never let him forget he’s a man.” That commercial tune rings in my head and makes me want to go back to bed!!  It’s not about pleasing everybody. We cannot, lest we displease ourselves. It’s about how we live and do we go to bed every night knowing that we lived our day well, without the frazzle and anxiety of what we must produce tomorrow. For perhaps to live life simply is not to do too much, but to do a few things well, including putting the intention back into the simple things we must do.

I have come to think that being proficient at one or just a couple of things is better than being the most efficient mother — the autism mom who advocates, “fights,” for her child’s rights, organizes events, sits on boards, writes articles, and barely has time enough to cook a good meal. It’s not that I’m going to necessarily stop all of these things, but I can’t do it all at the same time. The time has come to shed and to rebuild, to de-commit and commit, and to teach my son how to live a life well. I am sad to say that divorce has made me view life this way. But this is what happens when life hits you over the head. I may have still come to the exact same conclusions if I were still married, but I believe a marriage is a reflection of all the systems we build. And it too needs the commitment of simplicity.

“Most writers write to say something about other people  – and it doesn’t last. Good writers write to find out about themselves — and it lasts forever.” — Gloria Steinem

I have to admit it. Going through this divorce is one of the toughest things I’ve had to go through in my life. It really bothers me that some people think it’s easy and trite. It definitely is not. My marriage to Adam’s father was the most important adult-to-adult relationship of my life. So the the reason I’ve had trouble working and writing and responding to emails.  So the reason that many of my usual tasks have easily slipped my mind. I’ve hesitated and hesitated — do I write about my personal life? Do I write at Adam’s peril? What do I keep and what do I reveal, for as a writer, I find it difficult to avoid the truth and the self and disguise it in fiction. I am not a fiction writer. Not yet, anyway. As for Adam and this divorce, as far as I’m concerned, I’m only interested in human dignity, and while truths emerge over time and perspective, Adam’s father and Adam’s mother deserve the best regard and respect for Adam’s sake.

I’ve hesitated about writing about myself too much for fear it may appear like “writing therapy.” But let’s face it: all reading and writing is “therapy” if it brings us to a greater awareness and understanding of ourselves. The best reading is the “a-ha” moment — a connection with an author’s observation. For me anyway, the best reward is when others express gratitude and connectedness to my writing. Another reward is a larger perspective of life and the world itself, and a growing compassion.

Adam and I must move houses. I’ve been preparing one since the beginning of March. This is also top of the stressor list (death, divorce, moving…). So again, if I haven’t responded to some of you, please do not take it personally. Thank goodness for the house, even if it’s all bittersweet. A house allows us to build again. It asks for creative energy. As a creative person, I’ve come to realize that I’ve had a desperation to build something lovely, something peaceful.  It is only bittersweet because I am still living in the “matrimonial home,” which I built for my family and will soon have to leave. I put as much creative energy into that home too.  Yet with Adam’s father now gone, there is a loneliness to it all.

As for work in autism, I do so again quietly. TAAP will have to reassemble. It’s website will remain up as I seek to find ways that outsiders can contribute to its growth more readily and easily. As I read Gloria Steinem, I related to this: “I had felt burnt out many times in the past twenty years, like so many people in social-justice movements — especially in the feminist movement, to which women bring the very training in selflessness we are trying to change — yet unlike other women with more self-vision, I believed so little in my own inner world that I couldn’t stop to replenish it. Like a soldier who is wounded but won’t lie down for fear of dying, I just kept marching. Why? Well, if I stopped, I would have given up the way I made myself ‘real’ — that is, by being useful to people in the outside world — just as I had made myself ‘real’ as a child by keeping so busy that I numbed the sad unreality at home where I looked after my mother… my image of myself was very distant from other people’s image of me; and that, in short, my childhood years — a part of my life I thought I had walled off — were still shaping the present as surely as a concealed magnet shapes metal dust.” (from Revolution From Within, preface).

Maybe you can tell where I’m going as I move through the fact that I had lived my recent life for Adam, and I, like so many other women, was taught that the only way to be a “good” woman or mother was to constantly work and serve, leaving myself to the very end, if at all. I am not at all complaining or suggesting this was or is Adam’s fault. All of it was my choice — to work, to serve — and I still intend to do so. It’s just that as mothers with disabled children, we have a tendency to throw our entire selves into our children. And why? Needs are higher, for certain. But I also wonder about the lack of social supports to help us out — lack of respite for the average family, lack of inclusion, services and so great a lack of understanding. How many years (since 2005) have I written this blog and written before this blog, trying, by gargantuan effort, to convince family, friends, schools and public, that Adam is indeed worthy and valuable as he is?

Was it worth it? I have no regrets. But work in social justice movements may come at a high price. Not paying attention to our own growth and nurturing our relationships also comes at a high price.  How to mitigate it? I’m not so sure. I am not solely responsible for not nurturing it. I did what needed to be done. Adam still needs this to be done. I recognize that I also need to take care of myself for him. And that fine balance seems difficult for me to achieve. Or maybe I’m simply too hard on myself.

I’ve been called strong so many times. As I move through the pain and loneliness of divorce, sometimes it sounds like an easy write-off to me — “you are so strong, you’ll be fine.” I can’t tell if people say this to me because they fear my pain or just do not want to engage in it (understandably). I feel obligated to keep on a happy face for others, so I do not scare them away. Being a divorced woman comes with its share of stigma.  All I can say is I recognize that my situation renders great discomfort in others and sometimes I cannot spare the energy to spare them, even though I try.

For certain, I’m learning so much. I’ve spent the day in my new garden, filling in gaps in the earth with new perennials, being with the plants and the earth, knowing they will grow and bring me pleasure with their life. The dirt beneath my fingernails and a sore back is also a reward — knowing that I’ve contributed to renewed growth. Gardening is a creative, hopeful act and a belief in the future. A sore and gritty body means I’ve done the work to nurture it.  I do it as Adam is away this Victoria Day long-weekend with his dad. It gives me time to think.

I’m alone and I honour my relationship with myself and with Adam’s father to permit myself to mourn and learn as I dig deep. I believe that distraction is counter-productive. I believe that if things have to drop away for awhile, so be it, as I put my energy into rebuilding my life and making it as productive and creative as possible. I believe that, in the words of Noah Benshea, “strength is not the absence of weakness, but how we wrestle with our weaknesses.”

“I worshipped dead men for their strength, 

Forgetting I was strong.” — Vita Sackville West

A- ha.

I love this picture. It was taken yesterday atop of the CN Tower during a Mother’s Day lunch. Adam loves to kiss mommy and make her laugh (who says little auties don’t have a sense of humour!). As a woman going through the roughest times of her life in divorce (I will suggest that when someone you love leaves, it is like a death), it feels like a relief to count on the one thing that keeps me grounded and content. From this mom’s perspective, Adam and I are each other’s rock. We’ve managed to keep it together, despite lots of changes and a coming move to a new home. If divorce and moving be the top life stressors, then I will tell you, I think I’ve made it through.

I am sad to soon leave the home I built for Adam and my family and all that it represented. Someone said to me that a home is just four walls. But he was so wrong. A home is where the heart is; where love resides. My heart, though healing from a break, is intact. With a growing wisdom, I will raise a little boy knowing that where-ever Adam is, my home will be.