For What It’s Worth

Filed Under (Adam, Family, Joy, Single Parenthood) by Estee on 13-06-2010

I have to admit that I’m adjusting to my new role, still, as single mother. There are lovely days, like yesterday, when I want to spend my time with Adam. We awaited a thunderstorm that never came, but watched Disney’s Mulan anyway — a movie Adam has not yet seen. Adam is more interested in watching movies from start to finish now that his attention is stronger, his awareness keen. In the “early days,” Adam could only sit still for about ten or so minutes and movies were simply not possible. These are rather nice days, like the time today we spent walking around the Scarborough Bluffs, listening to the waves gently swell upon the shore and watching the geese fly off as elegantly as immaculately set-up dominoes. Adam lead me to the shore-side restaurant and we ate together. I’ll admit that sometimes I miss having someone to share this with us, and then again I cherish every moment now because I have learned that life changes in a moment.

Sometimes we spend our afternoons by the pool and he is content in what I have called his nest (see picture) — I have this chair outside even though the rain is determined to wither the wicker away. He will curl up after a swim and stare at the maple leaves hanging above him in the sunlight, reluctant to depart at my declarations that he must be getting cold and it’s time for a hot shower. No, he prefers to cuddle up and listen to the birds. I don’t blame him — it was the same chair I healed in after surgeries a couple of years ago and I dragged it outside because it’s far better to heal outside than in.

As his treat, I purchased Adam a new nest for his room today so I could put it in the corner where he has come to read his books. I placed it under a canopy I also created for him with twinkling lights when I set up his room in his new house. Like all things these days, it was over-wrapped. We arrived home and I was determined to get this simple task done for him. He helped me lug a bag inside and I asked him to play on his own nearby. He wanted to eat, he wanted to do something else — he wanted my help.

“Adam, mommy doesn’t have any help so you have to be my helper today,” I said. New single-mother talk, I’m thinking. But I’m also thinking how frustrated I am over trying to do everything as quickly as possible, wishing right now, in this moment, that I had someone to do it for me so I can turn to Adam instead.

“Just wait, Adam,” I say with irritated breath, unraveling yards of ties and cardboard with an inappropriate pair of kiddie scissors that were handy. It’s me that I realize I’m telling to wait, though. Adam is doing just fine.

I struggle to carry the big hoop of the chair to the upstairs and set the chair up, going as fast as I can.

“Come see, Adam. Come upstairs,” I am now asking after I just told him to stay put. I imagine my son thinks I’m nuts. He obliges me and goes into the chair and curls into it contentedly reading his series of I Spy phonics books, reminding me that “it’s not a horse; it’s a duck.” His language skills have improved. He talks in more sentences, in particular to tell me everything he sees. I suck in some air and sit on the edge of his bed, enjoying him enjoying the chair. I like to watch Adam happy and calm. Heck, I like to experience myself happy and calm.

I know I have to prepare dinner. The grandparents are coming soon, Adam was searching hi and lo in my kitchen for something, as usual, to eat. It’s a wonder the boy is so slim with all he eats.

I am breathing more calmly thinking that I know I can’t do everything at every moment I want to. I know that something’s gotta give; of some things I must let go at certain moments, and maybe even for life. I am still in that growing phase of learning to be on my own as a parent. Although life isn’t bad, it isn’t the same when you have to do everything yourself. I am learning, still, after two years to be okay with this.

While I get a lot of snuggles from Adam and a lot of kisses too, I realized that I don’t get a lot of “how are you’s?” from anyone, really. I don’t get the “how are you really doing?” kind of caring-talk. I suddenly realize it when Adam pops out of his room and hollers from the top of the stairs, “I wub you!”

“What?” I ask loudly as I am in the kitchen preparing food.

“I wub you mum!” All his words were spoken with force but with the same intonation. Then, I hear him go back into the room and shut the door.

I am stunned. I think Adam is saying thank you for the chair, for his little nest. I think he totally knows how much I love him.

For what it’s worth, I needed that.

Adam’s 8th Year

Filed Under (Acceptance, Adam, Communication, Single Parenthood, To Get To The Other Side) by Estee on 12-04-2010

“This movie is rated G and is suitable for all audiences.” Adam sat on the couch when we arrived home from Florida, both of us exhausted after waking at 3:30 in the morning to catch an early morning Westjet flight that was cheaper than the rest. The early bird catches the worm indeed, but you have to be prepared to be sleepy for the rest of the day. As I turned on a movie for Adam and I to watch together, this silent caption came on the screen and he read it, fully understandable to me. Adam’s speech over the past several weeks is becoming markedly clearer. Then, something suddenly went wrong with my cable box (as it has all year long — I need to write a separate post on the ABSOLUTE RIDICULOUSNESS OF TELEVISION TECHNOLOGY AND HOW FRUSTRATED IT MAKES ME, but let me save that for another day), and then the sound went mute.

“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.

_DX03632The 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.

Neurological Nirvana

Filed Under (Adam, Communication, Sensory Differences, Single Parenthood, Transitions, Travel) by Estee on 05-04-2010

A continuance of my last post “My Very Important Job,” I want to talk about how Adam becomes very relaxed by the ocean. The sound of the waves, of course and that beautiful sunshine — everyone was out on the beach yesterday on Easter Sunday, digging in the sand and laying around like beached whales. Adam I spend our days together and I take him to restaurants and new places to explore. I take Adam many places in order for him to become accustomed to them. He also enjoys new places especially when he’s relaxed. It is my goal as Adam is able to travel — although we have had difficult moments in our eight years. Yet I’d have to say that the difficult ones are rather rare, which might be why I tend to spotlight them when they occur. It’s funny, really, because as I talk to other parents, it seems to me that other “typical” children have had heart-wrenching tantrums. When Adam is distressed, what is heart-wrenching for me is not the “behaviour” but rather the fact that he can’t tell me with words what he needs. As his mother, I’ve had to learn to never take Adam’s movements, gestures, even types of cries for granted. They are all important pieces of information to me.

The kind of transitions that have been happening such as moving into a new home during a divorced situation is not fun for any child. Adam had his moments of extreme anxiety. In fact, it went on from the late fall until late February. A long stretch like that made me wonder if I’d ever see him smile again. Even though I knew it deep down in my heart, I did experience those moments of absolute panic.

Being in the south with Adam reminds me how anchored he is to me; how much he needs and wants me, not to mention how much he wants to see his mother smile. Watching how much he reciprocates, plays with me, wants to go everywhere with me, and talks (yes talks — he is very verbal down here this trip), is testament to the need for quality time spent with mom doing easy things. It’s also proof to me that I have to work on my own happiness and spend time doing the things I need to do to nurture it because I am not just doing it for myself. It has taken me two years to begin to realize this.

During that transition from fall to late February, there were days when he was so stressed that Adam didn’t even seem like Adam anymore. If I were a parent who would use this kind of lingo (which of course many of you know I am not), it may have seemed like “he wasn’t even in the room,” (which we know that of course autistic people are aware despite what others think of their behaviour, but this seemed like the appearance of a what Kristina Chew has coined the “neurological storm,” and I like that expression very much in terms of describing what these moments are like). For others who distill autism into that robot-type of cold person, Adam may have appeared “distant” — that we were “losing” him. He had lost all of his words, even. For Adam in particular, who is very affable and connected to people he knows well, this was a stark contrast. Yet, maybe mom was similar. Maybe it seemed like mom wasn’t really in the room anymore as I was trying to find the ground beneath my feet again after separation. I wonder how I may have appeared to my son.

Here, happy, relaxed and spending all of our time together, Adam has spoken the following:

Scenario 1: Browsing through a Payless Shoe Store looking straight at us: “Are you done yet?” Now for a parent with a more verbal child, this might seem like a nagging comment. For a parent with a child with few phrases, we were so happy, laughing hysterically!

Scenario 2: Getting ready to go but mom is trying to find her keys: “Let’s go, let’s go! Time to go, mom!!!”

Scenario 3: As he is doing something contentedly and I am trying to rush him out the front door: “Be patient with me.”

Scenario 4: After swimming and tugging on a wet bathing suit: “It hurts me.”

There are many more phrases coming out of his mouth down here in South Florida. He is not speaking in paragraphs, but such sentences are really nice surprises that this mom obviously doesn’t take for granted. Of course, Adam also has lots of physical activity down here. For a child like Adam who always needs to move around, a full day of swimming, running on the beach, climbing and swinging at the park, and going for long walks all seem to be another key to organizing that precious neurological system of his. Mind you, I’m not sure how to replicate the extent of this — the sheer quantity of exercise back in Toronto. Yet it’s another clue into how Adam needs to organize his neurology and attests to the things that make him feel happy and calm.

Another Bloom’n Birthday

Filed Under (Adam, Single Parenthood, To Get To The Other Side) by Estee on 22-03-2010

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Adam and I have birthdays fairly close together. It’s my birthday today and Adam and I spent the entire weekend celebrating.

Our first excursion was to Canada Blooms at Toronto’s Exhibition Place. We spent about an hour-and-a-half strolling and looking at garden constructions (which I love), and Adam seemed to enjoy it too. He loved the many water features and water falls and in particular, a tunnel made out of leaves in a children’s garden where little fairies were tucked into trees and other flora. Little surprises abounded like an Alice in Wonderland world — wine glasses embedded in wood logs, a tunnel made out of leaves, and other neat objects for the imagination. In our new garden at our new house, I’ve tucked away similar items for Adam to find — mostly animal and Buddhas. I think I may be hiding a few more things to make it more magical. There’s nothing better than watching a child intrigued and delighted by such things — simpler things that we can create rather than those we must buy.

As you can see from the photos above, this was the first time that Adam ever allowed his face to be painted. He chose the “red lady-bug,” he said specifically. “Red.” He smiled and tilted his head a little at the tickling feeling of the paint brush against his skin. I am thinking of how crowded it was and the little guy enshrouded by taller people. I specifically remember that feeling as a child — in malls and other crowded places where adults felt like a dense jungle above and around me that eventually I’d feel overheated and get a headache. While we left before it became too much for him, I’d say an hour-and-a-half was a pretty good chunk of time!

The following day we spent out for lunch and a walk, and finding ingredients for the recipe of (red) tomato soup he wanted to cook (he is reading a lot of cookbooks). So we made a list and went to the grocery store where I asked Adam to push the cart, and find each item on the list. He really enjoyed this even though he only spent about ten minutes with me in the kitchen because, frankly, I do not want Adam chopping onions and garlic for the handling of the kitchen knife. Instead, he got to stir the pot. Just the smile on his face from being able to do his own shopping was enough gift for me. Adam so wants to do many things and his pleasures are mine.

Then, we went to Riverdale Farm to see the animals. The Clydesdale horse came to see us and the cow’s face was so close Adam was enthralled. He watched it chew its cud for a long time and like watching him shop for groceries, I enjoyed watching him watch the cow. He reached out his little hand and I lifted him so he could pet the cow along its nose. He was also interested in the sheep. I reminded him of the sheep in Babe — the movie he watched almost every day when he was a toddler and wonder if he was thinking about them too. We walked around Riverdale and then came home to make dinner for my folks.

So it has been a simple birthday for me, full of earthly delights. And as for the ladybugs, let me quote Francis in Under the Tuscan Sun — may there be “lots and lots of ladybugs” in the coming year. I think I’ve shown this clip someplace else before, but this has been my movie of 2009:

It’s Always Darkest Before The Dawn

Filed Under (Acceptance, Activism, Advocacy, Autism and The Media, Discrimination, Inclusion, Single Parenthood) by Estee on 01-03-2010

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

Third Time’s A Charm

Filed Under (Acceptance, Adam, Communication, Single Parenthood, To Get To The Other Side) by Estee on 18-02-2010

images-1I’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

On Family Day Might I Ask: Just What Is A Family?

Filed Under (Acceptance, Single Parenthood) by Estee on 15-02-2010

different-kinds-of-families-clip-art-thumb4433910I 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.

During this time, the number of one-person households increased 11.8%, more than twice as fast as the 5.3% increase for the total population in private households. At the same time, the number of households consisting of couples without children aged 24 years and under increased 11.2% since 2001.

The households with the slowest growth between 2001 and 2006 were those comprised of couples and children aged 24 years and under; these households edged up only 0.4%.

Between 2001 and 2006, the number of private households increased 7.6%, while the population in private households rose 5.3%.

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.

Carry On

Filed Under (Acceptance, Adam, Single Parenthood, To Get To The Other Side) by Estee on 14-02-2010

cracked_heart-1802It 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.)

IMG00278I 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.

Autism and Moving Homes

Filed Under (autism, Single Parenthood, To Get To The Other Side) by Estee on 10-02-2010

teddy-bearThis 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.

Travel and The Autistic Child

Filed Under (Single Parenthood, To Get To The Other Side, Travel) by Estee on 06-01-2010

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

Somewhere in between: the truth and fiction behind autism and divorce rates

Filed Under (Acceptance, Celebrity Advocacy, Family, Single Parenthood) by Estee on 04-01-2010

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.

Home, home, home

Filed Under (Adam, Joy, Single Parenthood) by Estee on 15-12-2009

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.

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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.

Sweet Dreams

Filed Under (Single Parenthood) by Estee on 27-11-2009

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 we manage that?

Filed Under (Single Parenthood, To Get To The Other Side) by Estee on 23-11-2009

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.

Slipping Through My Fingers All The Time

Filed Under (Development, Joy, Single Parenthood) by Estee on 15-11-2009

“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.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.