Off To Sri Lanka Soon

Filed Under (Estee, Parenting) by Estee on 07-01-2012

I am leaving for a trip to Sri Lanka at the end of this week. Travel is something I’ve always done, and now that I’m divorced, Adam goes to his father. I’ve always been a traveler, and Adam has been a traveler because of it. He has been to quite a few places for a little guy. I remember my first trip on an airplane was when I was nine years old. My grandparents took me to Germany for the first time. Adam is going to be ten this year and has been on an airplane every year since he’s been a baby. I always advocate taking an autistic child places, no matter where, with readiness and preparedness. I’ve always packed a special bag for Adam and I talk him through every aspect of our travel. These days I get compliments just about every flight: “I’ve never seen a child so well-behaved.” I want to laugh and announce, “and he’s autsitic too!” People don’t expect autistic children to be well-behaved on flights. Yet I’m working the entire flight by anticipating all of Adam’s needs.

Traveling is mine. It’s an interesting feeling — being excited to go halfway across the globe, being so far away from home in a completely different culture. I also know I’ll miss Adam as much as he will miss me. I will send him pictures of myself as I always do, prepare a calender of days until mom is home, and talk to him once in a while. These feelings do not stop me from persuing my interests now. I know I am a full-on mom with him and doing my best. I know that it is also important to let children go to manage their own feelings. It’s a good lesson to let children know they are not being abandoned — that parents can go out for dinner or on vacation, and will return.

I know I have to calibrate, to have this time to do what I love as much as I try to nurture what Adam loves. For some people it might be a hobby. For me it’s Wanderlust and food for creativity, writing and perspective, and even parenting Adam.

So I’m about to journey. I’ll miss my little guy, but as in a small of resemblance to mom Rahna Reiko Rizzuto, who wrote Hiroshima In The Morning, it is my need to fulfill the other bits of me that need filling. I really appreciated the way Rizzuto was honest. I feel the book is important in redefining what mothers are expected to do as opposed to fathers. She continues to be a good mom to her children — something the press failed to really discuss in the whirl of controversey — except that her arrangement is more like a man’s. She sees her children once a week and every-other weekend. I’m not at all suggesting I do not wish to be a mother by mentioning her book. I wanted Adam so badly and I continue to want to mother him. I think her book is important for women to read, though, in making sure that we don’t lose sight of ourselves.

A man would not feel so guilty leaving his child for work or travel. A mother on the other hand, feels compelled to write a blog post like this one.

After June…

Filed Under (Autism and Intelligence, Behaviours, Joy, Obsessions, Parenting) by Estee on 22-07-2011

“Ma…. M. Ma… M. ” That’s what Adam said to me last night before bed, before he woke with a fever this morning, no doubt having caught the summer cold. It also happens to be Toronto’s record-breaking heat wave. As I wandered in his room with my early morning “gotta wake up” voice, Adam seemed woozy. I sat on the side of his bed and felt his forehead and body. He felt like an oven. There is not a day when he’s ill that I don’t want to take away all his aches and pains.

Last June was a difficult month of transitions — heck the last three years have been full of them. I find it difficult to write when we are going through something because I have to process a lot of my own emotions and ways of looking at life. My convictions are tested. I’ve learned that I’m glad I have some.

Losing an aide worker of seven years, another change in school, a new camp…Adam demonstrated his distress with an obsession with looking behind every door which lead to bolting. When Adam is anxious, his body twitches and he started to lightly nibble at his arm, and sometimes mine. If I had to describe it in my own words and perspective, it was like Adam had to explore everything as if it was a flight response. I would say that this was all about fear and uncertainty. He will able to tell be better when he is able. He is getting more able as he types more to me.

At first, I did what any other parent would do and asked him to stop. Drawing attention to it made it worse. When Adam goes through a state of anxiety, it is hard for me not to as well…like his illness, I wish I could take it away — all his pain. I wish it would stop. As a single parent, I take on the brunt of it too. My parents are a wonderful support system for me as are the people closest to me, but I take so much on emotionally where Adam is concerned. It is sometimes so overwhelming, and I find myself strewn across my bed when he is asleep wondering how I can go on. I find myself in that futile trap of worrying about the future.

Then something clicks. I think of Adam as a person, as I think of myself as a child — all of my fears and needs. I needed my parents, my mother especially, when I was scared or sick. My dad embraced me the times I least expected, like the break up from my very first boyfriend. My mother took good care of me while my dad taught me some lessons about brushing myself off again after life would offer its hits over and over again. I’ve learned that happiness is not a given. It is a gift. Life is about the struggle so it might as also be about how we handle it. I need to show Adam that I am as strong as he will be. He needs me to be.

There are times when I think it so unfair to bring children into a harsh world. I wonder, as Adam will have to struggle through life the way we all do, why I did this to him. Yet nature was stronger than this logic. I wanted Adam as much as I needed air. I cannot imagine life without Adam and without having this level of love and responsibility in my life. Sure, I’m not unlike everyone else that I also imagine freedom. Yet, now that Adam is here, it’s not as important. This is what I made, and what came my way, and I want to make the very best of it.

When I woke up that morning and everything clicked together again, I remembered that we’ve gotten through a lot of phases. I remembered Adam’s smile, even though he wasn’t smiling that much in June. I remembered how much he loves and needs me and how I am fit for the calling. I may have to lie exhausted, strewn across my bed some days, but I know as long as I’m alive, I’ll get right back up again.

Since his new camp began in early July, the twitching abated as did the nibbles on his arm. I learned not to call attention to it, and to provide him with more soothing activities, while teaching him how to soothe himself. Adam uses a steamroller — purchased through Southpaw Enterprises — as a “squeeze machine” which provides him with the deep pressure he seeks. As several weeks have passed, he is more verbal again and the smile is back, even in his latest group camp photo. I try to rub his back and tell him that I understand when he’s frustrated, and he appreciates it.

Adam’s ways of communicating are so diverse. He has motor planning issues, apraxia and catatonia-like initiation issues. These are not motivational in the least. These are real impairments which need understanding and creativity in order to help Adam become enabled.

When people also think that Adam doesn’t understand, I want to show what he can do on his iPad or computer. He is able to demonstrate his ability to answer, usually one hundred per cent on comprehension exercises, with a multiple choice format. I asked his school to do that last year and he was able to answer questions better this way because it is a visual prompt — he has to choose from one out of three of four possibilities. Another way to see this is through his iPad. There are programs (you can start with “Playwords”) that ask children to pick the right word to match the picture or the verbal prompt — some of the words are getting sophisticated. Adam can zip through that exercise like it is nothing. Yet, give him another format, like fill in the missing letter of a word he knows very well, he has some difficulty. He needs me to model several times, the correct way to complete the exercise. Then he’s flying again.

After a couple of weeks of camp, a video of the end of the day “Flagpole” was sent to me by email. I always wonder why Adam points to his favorite activity being “Flagpole,” everyday. It is an end of day camp activity where the entire camp gathers together. In this video, counselors were demonstrating a dance and all the kids had to follow. It was boring at first to watch the counselors on a roof dancing to warbling electronic music. Then, the camera panned out. Suddenly, a small figure to the bottom right looked familiar from the back. I recognized the beige floppy hat and the lean body. It was my Adam following the dance moves and I could tell he was intently watching. It looked like he was having….fun. I was so happy, I forwarded it to all my friends and family. It was indeed the gift I have learned never to take for granted.

Today Adam sleeps in my bed and he needs me around to take care of him. I’m stuck in the house, but I know he needs me, and he loves me. He has just woken as I get up from the other side of the bed. “Stay here,” he says. Don’t worry, Adam. I’m not going anywhere.

Wind of Change

Filed Under (Advocacy, Inclusion, Parenting, school) by Estee on 01-06-2011

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Today, June 1st, the winds are blowing strong. I’m not a fan of wind, of things being stirred up furiously into the air. Wind has always made me nervous and I want to be inside. I’m sitting out at the foot of my back door, drinking a Corona, about to abandon the otherwise gorgeous sun. Drinking a mid-afternoon beer is not something I typically do on a Wednesday as I wait for Adam to return home from school. I watch the gold, silent bubbles float up effortlessly. Hundreds of maple “helicopters” pirouette and land gently on my deck, leaving a soft brown carpet for my feet. If only life were as effortless and gentle. A gust comes and the carpet is swept away a new shape is made — they jam in between the deck boards and jut out like a bed of nails. A couple of hours ago, I got a call from Adam’s school. His class, just before summer begins, is being “dismantled,” I was informed. I am dizzy about September. Or is it the beer?

It will take me a while to settle my thoughts as I head down this new path, and to say what it is I want and need to say. This blog keeps me going a lot of the time. It is but one outlet for this autism mom. These days I’ve been using Facebook more because the feedback is plentiful, supportive and the discussion boards can get really interesting.

I’ve also turned to a core group of people. There is the team for your child and the team for ourselves as parents. As a single mother who, with the exception of my supportive parents and friends, must climb mountains for her choices, I continue to learn the value of turning to these people. I’m grateful to those of you, and you know who you are, for being there just to talk as I work out the next climb.

Now, I need another beer as I work out the plan, before I write any more. For the rest of the day, I’m taking off my climbing gear, waiting for Adam’s laugh, and watching bubbles.

The Morning After Losing Adam

Filed Under (Acceptance, Parenting, Safety, Wandering) by Estee on 15-05-2011

As you read yesterday, I lost Adam for about 10 minutes. It seemed a lot longer. When I returned home for the day, I was feeling down. I thought, just when things seemed to be going so well…another challenge. Then, my ceiling leaked from the rain.

Ah well, I said to myself as I opened my eyes this morning. At least Adam had the sense to re-enter that church all by himself. At least there was no tragedy. At least my roof isn’t caving in. Someone is coming to look at it hopefully later today.

I think it’s good to let the down go through us — to hibernate after an event like this. But I also reached out. I contacted every team member, my friends. I was so surprised by the deluge of support. I realized, that even as I think I’m alone, a single mother, I am not. I learned this by not keeping yesterday’s event to myself. I realized that I cannot do everything by myself.

I am really grateful to my friends, family and Adam’s support team who are always there for us, and even you readers who take the time to lend your support by commenting here and on Facebook. For me, writing is a way to survive, to think, to overcome my challenges. I cannot let them fester. Other people manage other ways. I manage this way.

I spent many years learning how to build a strong team of support. I realize that network has been carefully woven and I’m in awe of the time it took. I hope to be able to write a piece how I was able to create this web of support, and the trials of putting it together.

When we are building teams for our children, we have to look at good fits. We have to feel good about who is working with our children. For myself, I could not hire people who treated Adam in a way I did not want him to be treated. It was simply an intuitive way of parenting him. Building a team later became supported by what I was reading and hearing about certain therapies and ways people with disabilities have been treated. I never realized it, but I have a distinctive parenting style. I appreciate sensitivity because it suits Adam’s needs. I love kindness. I adore when people realize he is a person full of potential, despite his challenges. As I built a team to support Adam, I realize I also built one to support me in my ability to parent him. I realize my limitations and my need for others to help, and how we work as a unit. I am his mother. I am suited to loving him well. Although I teach him as a parent would, I am not a great teacher. I reach Adam by being gentle, not impatient. His interest in music and art is nurtured by my interest and activity. I’m good at a few thing and not good in others. When I think Adam needs to learn something I cannot teach, I am happy to hand him over to those who can give him those other gifts.

I ended the evening yesterday talking to one of my best girlfriends. She has a typical daughter. She talked about how she lost her daughter at the cottage. So many parents have reached out and told me their tales of losing their children — typical and autistic. When I rethink everything, I realize that exploring is a rite of passage. Adam wants to be independent — the very trait we want our autistic children to learn. He wants to explore, hide, and thinks excitable voices are really funny. I wonder if we target the autistic child for wandering, like so many other challenges, and forget about how the typical child does the same things as our autistic children do. The age ranges may be different, but sooner or later, it happens. Sure, I’m nervous about this and will be on top of it as will his team. Yet there is a side of me that thinks — tragedy averted, of course — that he made his way back into the church. He wants to explore and do his own thing. He tried to make his own popcorn the other day and wrecked my microwave. I mean, how many parents have the same story of their homes being near destroyed by a clever, well-meaning child?

It’s time to support Adam again and make a new plan. We have to avoid danger and we have to support his need to explore and be independent now. I just have to learn to keep up.

Early Mother’s Day Reflection for Autism Moms

Filed Under (Joy, Parenting) by Estee on 04-05-2011

As an only child and single mother to an autistic son, I have to be honest that I sometimes find myself grumbling about holidays. I know it sounds very cynical of me, but hear me out. Another hallmark holiday can make me feel left out. Our kids are supposed to make us cards, buy us flowers, gifts and tell us how wonderful we are. Usually, there is a husband to make the kids abide if the kids are too busy playing Xbox. I remember fondly making those cards and telling my mom how much (and still do) love and appreciate her. In my case, my dad didn’t always have to remind me. Adam can’t make me a card; at least not without the help of another person. So, another holiday comes and that’s the pang.

I can’t get rid of the holiday. Millions of people this Sunday will go out and buy flowers, and make their kids make cards for mom and grandma — another fuss. Don’t get me wrong, I think it’s lovely that people want to celebrate their family members. If I had gotten the date right this year, I may have even made a tea for my girlfriends and their mothers. Part of me does it to avoid self-pity. Another part does it because I believe in making celebrations out of just about everything, not necessarily on holidays. This Mother’s Day, I’ll probably visit my mother for coffee with Adam and I know she and my father will give me their good wishes.

As Mother’s Day approaches, I think of the daily moments I share with Adam; how much we’ve been through together and how much I wanted him. I waited until my late thirties to have him. Other’s have forced him to make cards and say “Happy Mother’s Day mummy… I wuv you,” and he repeats it obediently, hands me the card made with construction paper and crayons. Sure, I love the card and keep them in a special box, but I know he doesn’t care about it so much.

Today, he cares about the items he can make on his own volition. He cares about when I am there for him and can comfort him or love him just because. In return, I receive his voluntary hugs and kisses, his laughter, his smile, his pulling me towards him and saying my name. At night as I tuck him into his favorite blanket, he’ll say in his little voice, “don’t go.” In this house, Adam’s affection and his ability to express himself are like daily holidays. If your child has difficulty talking, you’ll understand these actions and the few words as the gifts that moms like us receive. Mother’s Day? I can see Adam laughing inside if he really understood the nuances of being forced to celebrate Mother. I mean, love is love. Period. He knows it well.

For us moms whose children cannot and may not make cards and say I love you this year, don’t despair. I hear you and I’m with you. Be proud of your mothering efforts and happy that we are moms of our wonderful children. I don’t know about you, but I never get the feeling that Adam doesn’t love me. Just because he can’t always express it in words, or as slick as a Hallmark card, I feel ocean waves of love and appreciation every single day.

That’s my Mother’s Day gift to myself, and to you.

The Path of Least Resistance

Filed Under (Joy, Parenting, Single Parenthood) by Estee on 06-04-2011

I’m a horrible mother. This thought entered my mind early Monday morning. Adam left for school. I leaned down and he smiled at me and kissed me goodbye, puckering his blushed lips, looking into my eyes. “Don’t forget to carry your lunch bag,” I urged, trying to teach him to become as independent and responsible for himself as possible. He grabbed the blue handle brusqley and walked out the front door in his spring jacket. At nearly nine years of age, he looks like a little man with a miniature brief case. He turns around, revealing a glimpse of soft skin. “I wuv you mummy, yes. B-bye.” I closed the door and headed to the window to wave the way I always do. Adam looked up at me as the car pulled away.

Adam’s birthday was a week away — a few days from now as I write this. It was March Break a couple of weeks ago and he was with his dad. We alternate that holiday every year and it was my time to do my own thing. Am I supposed to have fun? Am I supposed to fall in love again and rebuild my life? It’s so different being a single mother.

I panic, noting the date in my head. Which friends do I invite? Adam doesn’t get invited to very many play dates. Instead, we do programs and school. During programs he at least receives the attention and assistance he needs. There is structure. At least he is happy, but I’m missing him when he is in those programs. I still wish he had friends who came over to visit him in his own home. Adam and I are so dependent on each other for friendship.

Then there is our issue these days of him being terrified going to new homes. We have to work on that the way I said we would a few months ago. We have to visit friends on weekends, for ten minutes or so at a time, at least that’s my plan. We could work our way up to more time and voilà, Adam will be used to new homes. Why haven’t we done more of it? Parenting is tough work, period. It’s also important to enjoy our children. I think it has to be stated even more so when there is such pressure for us parents to be super-charged teachers or “warrior moms (and dads).” We need more balance in terms of what our roles should be and the supports we and our children deserve.

Right, there’s the PECS I have to print out. The team told me I have to label more around the house — they give me a lot of tasks.  More schedules. Safety rules to teach, the phone skills he needs to learn now. I’ve managed to at least put the PECS on the phone. It’s waiting to be programmed. There was that four page instruction list of OT recommendations for evenings in order to keep Adam organized and ready him for bed. There is the homework we do — at least I’m good at  that, piano practice. Adam is exhausted by the end of a long school day and likes to entertain himself on YouTube for a while. But we have so much work to do….

I’m exhausted by all this planning and coordinating of people. I’m guilty that I’m exhausted, some days, and wonder if I’m a good enough mom. I should be teaching him more on the iPad, his Vanguard — crap, I forgot I have to do that too and program it. Then there’s typing, reading books and comprehension questions I have to ask him every day. Reading an article in the Globe & Mail yesterday, Autism: Tracking a Decade of Treatments, and Dr. Cummings states that treatment includes looking “at the role of parents in working with their kids at home.” Holy *&^6. I’ve been doing this for nearly a decade and you want to lay on more?

The reality is, Adam comes home from school, eats his snack, likes to hang around me leisurely in my office or in the kitchen. We do homework, a bit of music and music comes easily to us. He sits beside me and we play duets and it feels like the path of least resistance when we are simply relaxed, doing stuff together. Later, has a shower and winds down for bed. I mean, how much time is there really in the day to be super autie mom? Heck, forget the autie part. There are some moms who home school and nurture genius. Maybe I’m just not one of them. Life has changed.

I try my best, even if some days I feel my best isn’t good enough. They are moms who run those PECS off every day at their computers. They are moms who crack the whip so their kids learn to type and publish books. I try to just keep things moving, negotiating with people in the background, but who are in the foreground of Adam’s life. For me, that’s a full time job right now. I’d guess that for all of us it is.

It hits me. I’m learning my limitations as a mother and as the person I am. I’m learning what I need to do and how to do it so that there is abudance of happiness, not stress, in my home. My laundry list of worries is part of my awakening.

I’m really good at the most important part of mothering Adam. That is, loving him. Lately he calls my name a whole lot more. So I guess he knows it. At least I know it too.

Party time.

Travelling

Filed Under (Parenting, Transitions, Travel) by Estee on 29-03-2011

I went to Bequia for March Break. It was my turn to take a vacation as Adam’s dad had him over the holiday. The island is in St. Vincent in the Grenadines and is really remote. I enjoyed every second of it.

As a single mom, I have a life with Adam and a life without. We are building a new life over the crumbled mortar of the last one, and often, that makes for beautiful design.

One realization I had after so much stress is that it is more important to be a happy parent of our children. Not only do I have to run Adam’s programs and team, but I think he’ll remember most the times when I was quiet with him on his bed reading books together, or we made jokes and laughed together. When I’m relaxed and fulfilled in my life, I find I have much more to give to Adam.

So I travel when Adam is with his dad, almost guilt-free. I sure do miss Adam when I’m away, but I also love being on my own again too. I also want to travel with Adam as part of my plan for writing and for building our family life. I need to travel to get new ideas and see life differently, and I believe children benefit too. I know that many parents hesitate traveling afar with their autistic children, and you can count me in. I’m worried about the flight, delays. A good plan is in the making.

Changing environments seems at odds for the autistic child who seems to need routine. Yet, Adam has also enjoys changes in environment. He tends to talk more when there is a change. So it’s a bit of a paradox. It’s the accommodations that bother him for the first few days which I have to think about in advance. I am trying to figure out how to make him feel more at ease when he’s in other people’s houses or when we are in hotels.

My idea? I’m thinking of renting a place in Europe that we can treat as our home base, invite friends, and take day trips. This is what I imagine:

I rent that villa in Italy I always dreamed of and bring Adam with me. We walk the Palazzo in Firenze, eating fast-melting gelato on a hot Italian day as hundreds of pigeons scatter, the quick flutter of their wings providing a light breeze against our glistening skin. Adam gleefully watches their flapping wings in unison.

We find a cafe off the main square at noon, the cathedral bells asking us to rest. He loves the spicy salami sweating in the yellow ochre sunlight and gathers whole pieces in his hands to take a bite. The ripe plum tomatoes burst in our mouths. As we lean back in our chairs content, the sound of footsteps and voices swell and dim as stylish men and women pass by easily on uneven cobblestones. I order a cappuccino and Adam eagerly spoons off the foam. Then, we walk across the square to the Uffizi and oogle the Birth of Venus and her flowing blonde hair. The long corridor leads to the next room, our feet echoing along. Children’s voices whine to go home or to the bathroom in foreign languages and parents say shoosh. I tilt my head sweetly at Fra Fillipo Lippi’s Madonna with Child and Angels. Then, I crouch down, and give my own growing angel a kiss.

Every reality begins with a dream. I have many and they all, even when I’m on my own, include Adam.

Parenting An Autistic Child

Filed Under (Acceptance, Autism and Learning, Inspiration, Parenting) by Estee on 08-02-2011

We’ve been peaceful around here. This morning Adam picked up my guitar that I’m learning (really slowly), and he played it himself, strumming and enjoying the reverberating sound. I guess watching me and other people has inspired him. He already takes piano lessons and that’s quite a formal learning process that he doesn’t always like — we adapt the lessons but this type of teaching still requires those old reinforcements (I call them bribes… let’s face it they work and that’s exactly what they are. Must watch out though, he knows that he’ll get that candy if he acts silly too). So, with the guitar, I want to let him explore. I took Royal Conservatory lessons for many years growing up. Piano teachers never liked when I sang in plays, or learned music by ear — which I was really good at doing. No, they were set in their formalized teaching method and there was no way I was allowed to waver. “It’s either the play,” said one of my piano teachers, “or piano.” I didn’t understand why one had to come at the expense of the other — it was all about music. I listened and won a few first place prizes at the Peel Music Festivals every year, but I played a lot more when I did my own thing. Perhaps we need more room for marrying creative exploration and formalized teaching. There’s a lot of treasure that’s discovered from staring out of a window, and learning things in our own unique way. It’s part of the creative process. It’s creative behaviour.

Despite my occassional worries (I’m a human being, a parent, that should say enough), I’m steady where Adam is concerned. When worry overwhelms me, I start reading more, reaching out and then I realize that I’m on the best track we can be on. The issue with parenting autistic kids is that there are too many opinions about how to teach and how to parent — hey isn’t that the case for parenting all kids? So many opinions.

What kind of parent am I? I ask myself. What am I capable of doing? After listening to how other people do things (or how they think they have to do things, particularly in the field of autism education), this can make a parent’s stomach churn with anxiety, and I think it’s okay to say enough. After doing the due diligence work, there comes a point in all of our lives, whether we are parents or not, to follow what we think is right for us. Reading any latest edition of The Autism News or any other study will make your head spin. I’ve made the PECS, the visual schedules, I’m teaching Adam how to type independently (it’s coming along well), he goes to a good school where I see he is learning new things, I seek input, advice, and lots lots more. It’s what a parent does. I’m not a teacher, yet I’ve learned to work with them. I’m not a therapist, but I’ve learned to communicate opening and share ideas. When I heard Rita Jordan once say on CBC Radio One that parents have to follow their own values in parenting an autistic child, I knew exactly what she meant. How many of us are listening to those voices inside?

Adam needs me to be his parent. With open arms and the love, he snuggles up to me for comfort, and I happen to be really good at this thing called love. He doesn’t need to know what I do for him behind the scenes. When he comes home, he just wants me to love him…as he is.

A (Short) Paradox of Love and Letting Go

Filed Under (Adam, Parenting) by Estee on 17-01-2011

Adam tried to pull me out the door with him in the morning. Since I returned home from vacation or after weekends apart, he tugs at my hand. He is bundled in his heavy red winter coat for the minus twenty-something temperature we’ve been having in Toronto the past couple of days. I know he has been effected by my absence. With separation and divorce, all kids and parents must traverse this similar path of custody arrangements.

So, these absences are not entirely within my control, although even married, parents do have to leave their children for work, for travel, for one circumstance or another. Adam’s Christmas vacation is split between mom and dad. While I’m not with Adam, I want to build my life. I am trying to figure out if there is a way to refine the fine art of living life and parenting. I’ve concluded that the best way I can be Adam’s parent is to remain my simple self, and including him in all of it. Sure, I have to accommodate the way in which he can be included in it, but that’s a different post.

Once in a while I get a report from his aide or teacher that he has asked for mommy while I am away. I can’t tell you the wave of love and trememdous guilt that overcomes me when I get those reports, or lately, even a short email now from my son. Then, I tell myself that this is the test of our love: that we can miss each other and always return, the universe willing. Still, for a young boy, typical or autistic, a parent’s absense must feel like the end of the world. Adam can’t tell me the depth of feeling he must have, but I can imagine it. I can remember what it felt like when I was a child and I use those memories to help me in the way I treat Adam.

“Come with me,” he says as he grabs my hand. Then the words don’t come — he simply tugs. His cherub cheeks peek from behind his ample hood with a tuft of faux fur. His eyes begin to look distressed.

“I can’t come to school with you honey,” I implore. “I will see you in a few hours.” He tugs harder, my body leaning into the warm hallway, his boot already on the icy front step; I’m afraid he will literally tumble out the door. He tugs for as long as he can before I kneel down and face him.

“I love you. I’m proud of you and I will be here when you get home,” I reassure, rubbing the sides of his down-filled arms, caressing his cheek, and then kissing his small, pouted lips.

He lets go reluctantly, dragging his knapsack behind him on the driveway and climbs into the car. I stand at the window with pangs in my stomach — to let him know I am watching. I am also jubilent at the same time, remembering how my mother did the same thing (the apple doesn’t fall far from the tree). I wait in the window, like my mother did with my father and I, to let Adam know the depths of my love. I’m pretty sure he knows this innately, but still.

The car pulls away and he looks at me longingly through the backseat window. I wave thinking that this is, paradoxically, one of the best moments of our lives.

The Eight Year Old

Filed Under (Acceptance, autism, Development, Parenting, Safety) by Estee on 18-08-2010

Lately I’ve used this term: “the normal path of autistic development.”  I use it because I do believe that the path of autistic development seems to take on familiar patterns like later acquisition of language, motor planning skills and social skills, to name some. So, although we recognize that while autistic people are similar they are, like all people, also very unique. For the purposes of this post, however, let’s just say, it’s often more elegant to compare apples to apples.

Every once in a while, however, I go check out the oranges. Perhaps it’s because I’m a first-time mother to an eight-year-old boy. I’m quite familiar with that path of autistic development as I find stories in common with other autistic individuals and the parents of them. Yet as a parent of a young boy, I’m curious about the typical eight year old boys. Aside from the speech, the social skills, the sports (among other things),  I notice that Adam is becoming a, for lack of a better word, typical eight-year-old.

Case in point:

He is curious.

I can’t keep up with him in the house.

He wants to be independent and doesn’t want my help.

If I tell him to stop doing something, he gets angry with me.

He climbs and moves and climbs.

I tell him not to.

He does it anyway, even though I know he understands.

He thinks disgusting things are funny.

I don’t like it.

He thinks that’s funny.

I feel out of breath trying to keep up with him.

He thinks that’s funny.

He seeks out attention.

He likes attention.

I find myself sounding like a nagging mother.

I don’t find that at all funny.

He knows things.

He figures people out.

He can manipulate people.

He is becoming more aware.

He is becoming self aware.

That makes me short of breath….my list goes on…..

Are we getting the point? Adam is a boy full of beans. He is growing and maturing and often gets frustrated because he wants to be so independent. That sometimes gets me frustrated as well because I wonder why I feel so ill-prepared.

After climbing upside down into his trundle bed and tearing off the guard rail (I guess he means to say he no longer needs it), I decided to pull out the old Alphasmart Neo keyboard that is so handy to carry around because it is so light weight. Even though we are practising on the Vanguard, a much heavier AAC device, I find the Alphasmart still useful in a pinch. Adam has been practising writing stories on his computer independently. We write them out together, then transpose them, if you will, onto the computer to improve his typing skills. I was quite pleased today to see how his spontaneous communication via typing has also improved. It helped us calm down before bed time this evening and he told me about camp, his counsellors and his day. His body calmed and he was not just the active eight-year-old, but a more empowered one this evening.

Adam wants what he wants when he wants it, sometimes. For the most part, he listens, puts away his things, is now more inclined to get his own things. Then I wonder why I am so out of breath. I mean, it’s what we’ve been working towards for so long. He can put on his own shoes, is beginning to dress himself (okay not perfectly, but I don’t care), and wants to give himself his own shower (I am fearful of the hot water). For certain, I must worry about safety and must always try to stay a step ahead of him. It was this boyish progress that prompted me to check out the oranges. I realized that really, all kids are the same. Just because some can or cannot do certain things, it doesn’t take away the will or desire to do them. Just because Adam can’t talk fluently or initiate play with other kids regularly, does not make him any less of an eight-year-old.

I’ve known that, but to live through our autistic kids’ development just be different for us parents, after all. For so long, we worry about what our kids will not do, and we spend inordinate amounts of time and resources trying to teach them how to do things. There is nothing wrong with this!! Yet when it happens  we sometimes speak about our kids as a series of behaviours instead of noticing that they are growing and maturing as they should — as they should differently, autistically and at the same time, very similarly to any other same-aged child.

I must consider to stop running out of breath and learn to just breathe.

Isolated No More

Filed Under (Acceptance, autism, Parenting) by Estee on 08-08-2010

Fellow Aut-Mom Bloggers: Kristina Chew, Kyra Anderson and Me

I’ve been to a few autism conferences in my time since Adam was diagnosed in 2003. The ones I found most helpful to me in those early days were the ones where many autistic adults “ran the show.” There was nothing more helpful to me at the time in trying to understand Adam, autism and the future for us both, than in meeting adults who were living their lives successfully — non verbal typists to wonderfully verbose Aspergians. I learned from everyone that there is a future for autistic people except that the issue for autistic people was that they were often not invited to speak at autism conferences for parents, or invited to participate on policy panels regarding the treatment and services required for autistic people.

As I said, I think this helped me become a more settled, accepting parent. I avoided parent conferences after that primarily because I was avoiding negative messages, fear and stereotypes perpetuated largely by non autistic “autism experts.”

A couple of years later, interested in pumping my writing life “up” again, I attended this year’s Blogher Conference in New York City where I met many autism mom bloggers that you may already be familiar with:

This Mom
Niks Mom
Thinking Guide to Autism
Susan Senator (although we crossed paths this trip)
Stimeyland
We Go With Him
Love That Max
MFA Mama
Sneak Peek At Me
Have Autism Will Travel
Pixie Mama
The Betty And Boo Chronicles
AspieAdvocate

Squidilicious

(If I missed a blog, can someone please post it in the comments?)

At the autism panel I was really overjoyed at the outcome as I have never heard parents so contented with the state of autistic being. For me, this is a real change from parent conferences I attended in the past. Perhaps this is the next step in the history of autism acceptance within which we are all participating and creating.

There was discussion about the isolation as an autism parent — that the diagnosis of autism, we were told, is “life-ending.” Then, there was laughter in the room.

Yet, I acknowledge that I did feel in the beginning that I would be all alone in this. There is some truth that when speaking to others about autism, it is sometimes tiring in that we are always educating others and thus feeling separate from them, not to mention some missed coffee klatches because our lives are different. Feelings of isolation are very real, and yet, I was wishing that every newly diagnosed parent and child (and I will say parent and child because it effects both so deeply), could listen to this kind of presentation. Maybe newbie autism parents would feel a sense of relief that we all so deserve.

My favorite line was from a mom who described her child having fun and being happy to which she responded with ironic laughter, “oh isn’t it so sad, there’s the misery.”

There was no misery in this autism room in NYC, We’re no psychedelic dreamers. We have our feet on the ground, and we’re still smiling.

A Single Mom’s View of Autism, Divorce Rates and Stigma in the Pursuit of Love

Filed Under (autism, Critical Disability Studies, Disability Finances/Benefits, Discrimination, Parenting, Single Parenthood) by Estee on 29-07-2010

“Before you break something apart, it helps to know how it hangs together.”

 — a quote from SEED magazine regarding art and science and the contributions art can make before distilling the neurological nature of being human.

It helps to know what makes a marriage or relationship hang together. The manner in which we build a union between two people can be pinpointed from the moment it begins. Over time, I’ve come to believe that strong foundations for a relationship are built on honesty, sharing, trust, communication, respect, personal character and commitment. These attributes become ever-more important when we decide to start a family. I might suggest, as a woman with some experience, that a serious review of some of these attributes in ourselves as well our partners, and an agreement of some kind, is of prime importance before starting a family.

Instead we get swept up, probably because most of us are young, in the idea of what a marriage should be instead of looking at the practicalities of construction. Naively, we come to believe that having a baby is romantic and naturally, all we want to do is proliferate the romance. In an age where we are encouraged, and should to some degree, go with the flow, we may have swung too far. Perhaps we do not consider our partners in construction carefully enough because it seems too “business-like.” Yet real life seems to be that fine balance between the two. As the saying goes, all we have at the end are the relationships we’ve built, and might I add, maintained. In a society that values Individualism, it seems to me that many of us have forgotten that it takes a community to not only raise a child, but to also sustain us as adults, so we better be paying attention to how and what we build. As Thoreau said, “build [those] castles in the sky…” but it helps to place the foundations under them. It behooves us to try our best to ensure they are strong.

Let me clarify here that I am a woman writing in retrospect as I am now a single mother of an autistic child. I’ve seen that when relationships fall apart, we blame it on other things. No matter what, external factors will impact a life and a marriage — illness, disability, death and other unfortunate occurrences. We hear it in the marriage vows (for better or for worse, in sickness and in health), yet it seems few of us care to consider the meaning of those words which, in my view, can apply to our friendships and other types of partnerships. I mean, no one can really scoff at those marriage vows even if one doesn’t believe in the institution. We all want someone to see us for who we are, and to love us until the end. Yet, sometimes the two people who came together with the best of intentions cannot endure the stress and do not function well as a team when challenged. In an era of extreme autism fascination and fear we can be ultimately challenged. As such, it is also assumed, and often written, that autism is a main cause of divorce. The unknowing, innocent autistic child is then targeted by society as a result, and it is yet one more reason added to an exhaustive list of why we must cure and change the autistic child as quickly as possible. Instead of considering that all children are a test — that in fact, all of life is one big test — we yet again blame the autism.

I have always found the idea of blaming the autistic child for the deterioration of marriage as something unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might even in some small way be true. There can be more stress because our children have atypical needs that are not easily accommodated in our communities. In North America, we are still in the process of legislating what the rights of disabled (including autistic) people must be. We have acknowledged that the rights of autistic people are about thirty years behind of how we regard and grant rights to people with other disabilities. In other words, there is still a journey ahead.

As a parent also living in an age when governments do not understand autism and the accommodations autistic people need to contribute as autistic people, there is more stress when we have to fight to get our kids into schools, obtain financial support, acquire respite help, augmentative communication devices, social skills and vocational training and later, appropriate housing accommodations, access to community colleges and universities with aides and supports that allow our adult children to continue to learn and contribute. By default, we’ve become activists, advocates by no choice of our own. Daily, in some way shape or form, we always seem to be negotiating prejudice in order to get our children and our families what they need. Yes, it can be exhausting in the beginning. I believe all parents need to pace themselves for like life, the journey is long.

I’ve heard that some spouses complain about mothers (let me clarify that the bulk of writings on the topic seem to address the mothers) who take on such a role. “If only the child was “normal,” then the mother would be able to attend to her husband more often. I’ve also heard single moms of more than one autistic child claim that their entire identities are entwined in autism, and as you can see from the laundry list above, it is with good reason. Further, some families that are mixed with typical and autistic children also seem to experience more stress because the autistic child is held up against the typical one and there might be some unhealthy comparisons. As a mother of only one child, I have to consider that some of my stress may be alleviated by the fact that I know of no other way to live. I have no other child to compare mine against. I consider this one of my many blessings.

It might be true that some husbands (and this can also apply to mothers, I do not wish to target husbands, so let me clarify this here even if I do state either “fathers” or “mothers”) do not care to participate in the intensive initial learning curve of raising an autistic child. It is true that some partners bail and leave the brunt of the work to the mother. It is true that in the first years after a diagnosis, and in our new age of autism fascination and fear, autism required a lot of reading, research and self-enquiry. Yet, life evolves, our children mature and we move beyond that “crisis” phase. One can only hope that our partners will hang on until we get there. Still, blaming the mother for the failed marriage is an old idea — we’re either as cold-as-ice- Bettelheim- Refrigerator-Mothers or we are terrible wives. Misogynistic ideas flagellate us and the ideas run so deep they are tough to beat. While there are single mothers truly struggling and are in need of respite, access to services and financial support, I also suggest that these are the caregivers who should be at the top of the list for such support. For after all, it is true that if a mother does not explore herself and her own needs, she will not be able to give herself to her family.

I also think there are all kinds of mothers, those with special needs or typical children. Some are the ones always carpooling, always talking about their children at social functions — forgive me please if you are one of them for it’s your right, but it’s just not my style. Although I spoke a lot about autism in the early years as I tried to figure it out for myself, and I often write about my son on my blog, I do not always wish to talk about him or about autism and I never wanted a bucket full of kids. In short, I’ve seen more women of typical children get so caught up in their motherhood roles that I find it so ironic that mothers of autistic children get blamed for failed marriages because we get so involved in our “autistic” children’s lives! Indirectly of course, the autism, or autistic child is also blamed. In all of my years I’ve tried to always enjoy my passions, even if I’ve had to sometimes put them on hold at various points in my life. Even while my autistic child is a huge source of happiness for me, I recognize that in order to be a good mother, I have to explore and live my own life. I believe that by being my non-super-mom (hence the lack of carpooling) very basic self, I am setting a good example for my son. Mothers of autistic children are also professors and other professionals with successful partnerships and marriages and others are struggling to care for the children on their own while trying to make ends meet. Like everyone, we are also a diverse community. No matter where we are at, finding the balance is an art we seem to always be working at.

A new study debunks the incorrect divorce rate and some of the assumptions that we have mustered that belong to the myth. Dr. Brian Freedman of the Kennedy Krieger Institute found that a child’s autism “had no effect on the family structure.” In fact, he found that 64 per cent of children with autism belong to a family with two married biological or adoptive parents compared to 65 per cent of children who do not have ASD. Freedman’s study acknowledges that parenting an autistic child may be more stressful and it may put pressure on the marriage, which he found in past studies. As I looked back to reference this, I found one executed in the Journal of Autism and Developmental Disorders (Vol. 19, No. 1, 1989): Brief Report: Psychological Effects of Parenting Stress on Parents of Autistic Children (Wolf, Noh, Fisman, Speechly). What was noteworthy to me in this study was an assumption that parents felt that their own personal goals were delayed or forfeited (Kohut, 1966), disappointments with delayed developmental milestones (Howard, 1978), worry regarding future self-sufficiency (Wing, 1985; Wolf & Goldberg, 1986), and the unpredictable, ambiguous nature of autism as important sources of life stress that impose physical and emotional strains on parents exceeding levels experienced by parents of normal children (Bristol & Schopler, 1984; Korn, Chess, & Fernandez, 1978). Freedman seems to have used these assumptions when citing that parents of autistic children suffer a greater amount of stress than parents of children with Down Syndrome or typical children; that mothers report more depression and fathers deal with stress by distancing themselves and becoming less involved with the family. (Source: Kennedy Krieger Institute).

Yet, in an analysis of the National Survey of Children’s Health, data showed that other factors can contribute to divorce, “such has having a child with particularly challenging behaviors with and without autism [bold mine]. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point.” Freedman wishes to conduct more longitudinal studies to find out how relationships can survive such stressors and what factors may enable the successful marriage. Alison Singer, founder of The Autism Science Foundation agrees that it would be helpful to find the “net stress reducers,” for families, noting also that the 80% divorce-rate myth may have added to our stress as parents and marriage partners.

It might help to add here that Canadian researcher Lonnie Zwaigenbaum in his paper A Qualitative Investigation of Changes in the Belief Systems of Families of Children With Autism or Down Syndrome (Child: Care, Health and Development, 2006,32: 353-369) concluded that families with autistic and Down syndrome children resulted in a reconstruction of values, expectations and actually added to a sense of overall happiness and joy. His team noted that most families believed that their children improved their quality of life. I will concur. Having an autistic child, even with the challenges, has brought me down to earth and made me appreciate many more aspects and people that are currently in my life. My son Adam has been my most profound teacher in helping me see not only the realities of life, but in living with them to the best possible degree.

Still, I thought it really important to discover why so many people believe that families with autistic children in them, are subject to higher divorce rates. They seem to be based in our beliefs and fears, whether they are real or not. We are told many negative things when we first hear the word autism and the idea of having a difficult marriage is not a welcome message. As a single parent, I also have to consider what of those negative messages permeate societal thoughts and the potential for future relationships as society (and potential partners within it) believes that life is so hard for us that we do not have time for the pursuit of happiness.

We learned the extraordinary lengths we would have to take to help or “cure” our children — the strain on our financial resources and time — but the future, even with such investments, looked uncertain. When I consider stress, I have to account for some of the images I have had in my own journey, particularly the early ones. Thoughts like: thwarted dreams, a curbed schedule, shiny white hospitals with fluorescent lights, and spare cots (as seen in the neglected institutions of the 1960’s) popped into my head as I lay putting my autistic son to bed, his hair still baby-soft and face so sweet. The images did not fit with my reality, yet, I wondered how these haunted thoughts would effect the way I dealt with my son. Those images collide against the perfect Hollywood glam of serial daters and spouses with their perfectly coiffed children in gleaming black limousines. Let me quickly add that you will find me often blaming Hollywood for our warped self-images.

By taking a serious look at these narratives and images, it is possible to come back down to reality and back away from feelings of doom. Not only do I know my marriage did not dissolve because of my autistic child, but I became interested in the underlying fears that may prohibit some people from believing that future relationships with autistic children are possible. In other words, I think there is a correlation between our idea that autistic families must have higher divorce rates because,

– we believe we suffer more stress because we feel we devote much more time to the autistic child than the neurotypical child, possibly without considering the issues that many typical children have that can also put a strain on marriages and the outcome of all children is uncertain;

– we have automatically concluded without further inquiry into our belief systems, that single parents of autistic children have it tougher and therefore have less time for current or future relationships (as compared to families with typical children);

– and that our historical view of the disabled as asexual non persons is inherited in how we view ourselves as parents and human beings.

The stigma facing the disabled community still lingers. We see a person with real physical or cognitive issues, and a slew of ideas and images cross our minds. I find it helps to always catch myself in these moments of thought and question the immediately. It’s not that most of us really know anything about the disabled person’s life, for many of us have never had a family member or lived with a disability. History continues to pulse through our veins and when we view disabled persons, we think of institutions, hardship and poverty — not the typical attractive traits we think of when exploring sexual relationships.

In autism in particular, we are all too familiar with the head-banging narrative. It was the first thing we envisioned when we heard the word AUTISM. Whether our children were diagnosed at the age of two, three, four or beyond, that very word altered our perspectives of both our children, and our futures. I can think of no image associated with a word more powerful in my lifetime. It takes so much time and self enquiry to unravel the fear and begin to find that balance again. In addition to unraveling and reconstructing our expectations for our children, we need time to discover what we need as parents to live a full and “balanced” life. As a newly single parent who has spent two years thinking hard about this, I can think of nothing as important as taking care of myself and having an important relationship (one can be happy being single — everyone has to find their own path, of course) as not only setting the right example for my autistic child, but for my own happiness which is as much as my right to have as it is my son’s.

It is said that the most successful people in life are the ones who are most adaptable. We are put to the test time and again. We try to build strong foundations and sometimes the end result doesn’t turn out the way we expect. So we keep trying. I’ve given myself some space and time to create a positive atmosphere and peace around myself and my son. This painful time has been precious and with every day comes an awareness that life is neither perfect nor predictable. We cannot predict the outcome of the autistic or the typical child, as much as we would like to think that we can and for that reason I believe things are meant to fall apart so we can rebuild them again with more wisdom and a healthier outlook. I share this story in hopes that we can all exchange our experiences and become a little wiser. Today, we are so fortunate to have the benefit of more autistic adults showing us what they need to contribute to society. We have more positive examples to live by and this by its very nature gives parents more hope. I find it quite relieving to see that there is a sort of “normal” path of autistic development. We are made more aware of the stigma that influences our thinking and can choose to move away from it.

The outcome of divorce and lack of support can fall on single parents with all kinds of children. Yes, autistic children need more support in a world that doesn’t value them as they are. In a recent conference called Autism, Ethics and Society, based in the U.K., the introduction to the sessions read: “Autism is a common [italics mine] neurodevelopmental condition that has dramatically captured attention in the last decade.” While there is much concern about further stigma regarding genetic testing and other scientific discoveries, there is comfort in common-ness, commune and community. Might we be coming to a new decade where autism isn’t as scary and we as parents receive more moral and practical support (like getting into schools), that ease the mental stress that seems to going along with both marriage and single parenting? I definitely believe that along with new people that will come into our lives, this is the new frontier for Adam and myself. At least it’s my castle in the sky. I’m in the process of rebuilding the foundation underneath it.

—–
A little postscript today: After writing this, I received a note from Adam’s camp counsellors describing him. It says, “Adam brings charm to the senior 24 group. Like the gentle Snorlax Pokeman, he maintains peace with everyone and shows a love for nature. If it was not for him, we would have never found all the golden eggs.” All I can say is….exactly.

Miraculous or Naive?

Filed Under (Acceptance, Activism, Advocacy, Art, Autism and Intelligence, Autism and Learning, Autism and The Media, Communication, Development, Joy, Parenting, Politics, Writing) by Estee on 24-05-2010

It is said that one should write something that they would like to read. In those early autism years, as I was in that period of coalescing my arguments and thoughts about autism, I have enjoyed writing about Adam, motherhood, and our “journey.” There is a sense of therapy to writing and that can be beneficial for many people undergoing a similar situation. Writing can help us transcend the feeling that we are “all alone.” Yet I have the feeling after being a few years in this, that filtering autism down to miracles and gifts as well as horrors and tragedies has just become naïve. It’s time for all of us to up the ante (I am turning the finger towards myself here).

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

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

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

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

And this may be the only miracle.

An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives

Filed Under (Acceptance, autism, Autistic Self Advocacy, Parenting, Sensory Differences) by Estee on 04-05-2010

Thanks to a friend who passed along this paper (titled above) by Dawn Eddings Prince (formerly known as Dawn Prince Hughes) published in ETHOS. It is an endearing story of a mother with Aspergers to her autistic son.

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

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

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

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

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

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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.