Mind-Body Problem

Filed Under (Acceptance, Poetry, To Get To The Other Side) by Estee on 30-03-2010

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

but for my body. It was so direct

and simple, so rational in its desires

wanting to be touched the way an otter

loves water, the way a giraffe

wants to amble the edge of the forest, nuzzling

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

unfair, somehow, that my body had to suffer

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

with certain unfortunate high-minded romantic notions

that made me tyrannize and patronize it

like a cruel medieval barn, or an ambitious

English-professor husband ashamed of his wife —

her love of sad movies, her budget casseroles

and regional vowels. Perhaps

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

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

with “None of your business!” Perhaps

it would have like more presents: silks, mascaras.

If we had had a more democratic arrangement

we might even have come, despite our different backgrounds,

to a grudging respect for each other, like Tony Curtis

and Sidney Poitier fleeing handcuffed together,

instead of the current curious shift of power

in which I find I am being reluctantly

dragged along by my body as though by some

swift and powerful dog. How eagerly

it plunges ahead, not stopping for anything,

as though it knows exactly where we are going.

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

Remembering The Reason

Filed Under (Acceptance, Activism, Art, autism) by Estee on 24-03-2010

I decided to post this after seeing it again for the first time in three years. It was a lecture I gave at M.I.T.

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

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

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

Spring

Filed Under (To Get To The Other Side) by Estee on 24-03-2010

imagesWhat is it about spring that makes us want to throw off our shoes and dance in the grass, okay, even if it’s a little wet. In our new home, unlike our former home, the children are out and about in this neighbourhood and it reminds me of my own childhood days. I remember the spring and the first crocus blooming — the promise that summer is around the corner.

So as it happens, I don’t want to write much and I don’t want to work. We Canadians are already enjoying an early patio season whenever any opportunity presents itself. The blackness makes us yearn for the light. I too want to be basking in the sunshine, for I finally can. I can finally enjoy it after a momentous yet prolific darkness. I am taking my dance classes, my Buddhist meditation classes and have my writing assignments in front of me. Every Wednesday evening, Adam and I have developed a new ritual of taking a very long walk where-ever he wants to go and then we had out for pizza at a nearby restaurant just footsteps from our new home.

It is our way of learning our new path…and basking in the moment. Sometimes a girl (and her little boy) just has to get out there. Even we parents with special needs children are allowed.

Promoting A Friend

Filed Under (Uncategorized) by Estee on 23-03-2010

Ever-Tried

My dear friend Carla Lipkin, fine artist, has a shiny new website I’d like to help promote. I’ve commissioned Carla for several pieces but this one was one of the most special, as it consists of six months of quotes and words I had written within the first the six months following my separation. Carla took just as long to paint it — with thirty layers of paint.

Enjoy Carla’s site, artwork and she is the best person to work with for commissioning work!

A Letter from Lewis Carroll

Filed Under (The Joy Of Autism, To Get To The Other Side) by Estee on 22-03-2010

images On Saturday I saw the adaptation of Lewis Carroll’s Alice in Wonderland in an attempt to catch up on all of those wonderful movies out there. I wrote about Carroll and his autism here. I have come home to receive a “love letter” from my son and then to coincidentally read a love letter by Carroll. To his Gertrude he wrote:

“My Dearest Gertrude,

You will be sorry and surprised and puzzled to hear what a queer illness I have had ever since you went. I sent for the doctor and said, ‘Give me some medicine, for I’m tired.’

He said, ‘Nonsense’ and stuff. You don’t want medicine. Go to bed!’

I said, ‘No, it isn’t the sort of tiredness that wants bed. I’m tired in the face.’

He looked a little grave, and said, ‘Oh, it’s your nose that’s tired: a person often talks too much when he thinks he knows a great deal.’

I said, ‘No, isn’t in the nose.’ Perhaps it’s the hair.’

Then he looked rather grave and said, ‘Now I understand: you’ve been playing too many hairs on the pianoforte.’

‘No indeed I haven’t,’ I said, ‘ and it isn’t exactly the hair: it’s more about the nose and the chin.’

Then he looked a good deal graver, and said, ‘Have you been walking much on your chin lately?’

I said, ‘No.’

‘Well,’ he said, ‘it puzzles me very much. Do you think it’s the lips?’

‘Of course,’ I said. That’s exactly what it is!’

Then he looked very grave, indeed, and said, ‘I think you must have been giving too many kisses.’

‘Well, I said, ‘I did give one kiss to baby child, a little friend of mine.’

‘Think again,’ he said. ‘Are you sure it was only one?’

I thought again and said, ‘Perhaps it was eleven times.’

Then the doctor said, ‘You must not give her any more till your lips are quite rested again.’

‘But what am I to do?’ I said, ‘Because you see, I owe her a hundred and eighty-two more.’ Then he looked so grave that tears ran down his cheeks and he said, ‘You may send them to her in a box.’

Then I remembered a little box that I once bought at Dover and thought I would someday give it to some little girl or other. So I have packed them all in it very carefully. Tell me if they come safe or if they are lost on the way.’

Lewis Carroll”

What a fantastic letter! I have not received any such boxes for my birthday this year, but I have received a kiss from another little autie I know. And I may still receive a few hundred more.

Reference:

Love Letters from Great Men, Edited by Stacie Van Der Pol, Pacific Publishing Studio, 2009 (pp.13-14).

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:

Autism Levity

Filed Under (autism, Humour) by Estee on 18-03-2010

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Heck we need to laugh. Or at least I do. In fact, I think most autism parents needs to laugh as do autistic people about autism.

I was with my friend from the National charity Unity for Autism today, Kathy Deschenes who, like me, completely volunteers her time to her charity. Kathy has written as of yet, an unpublished book on all the funny stories about herself and her autistic son. Kathy is not only a dynamo in pulling people together, but her charity this year is raising money to provide mentors at York University — something that I am personally thrilled about.

Kathy is exuberant and she has the levity that we all need when it comes to thinking about autism and raising our children. I think her book would be a boon to the existence of us all because fair laughter often takes the stigma away. When we laugh, we come closer together and laughter can dispel fear.

We are talking about how her son Lee, now seventeen, had few words like my son Adam at the age of eight. Lee has been accepted to attend a college for Art and Design but wants to get into another college for computer animation. Kathy is relaying to me over coffee how frustrated we can become as parents, thinking that our children’s distress is caused by one thing (like how I’m worried a marital separation may have effected Adam) and how, when our children can tell us, what we thought was the cause of stress was/is not the culprit at all. Sometimes the media images and messages about autism can get us so down that we forget that there is a bright future and while it may be a little different, it isn’t any less hopeful or humourous than life itself. It is a welcome message as the tendency I have is to blame myself as so many other parents do. So here is the story:

Lee, at the age of 8 1/2, still with very few words was given an option for dinner one evening.

Kathy said, “Lee, what would you like for dinner: macaroni and cheese or grilled cheese?”

Lee replied, “Pizza, pizza, PIZZA!”

“No Lee,” she said, trying to get him back on track, “your choices are macaroni and cheese or grilled cheese.”

“PIZZA!” he replied again.

A battle of wills ensued and Lee was sent to his room. Two minutes later, the doorbell rang. It was pizza delivery.

How on earth did he order a pizza? Kathy thought.How can a non verbal autistic child order a pizza? Industrious Kathy got down to investigating. She called the pizza company.

“We thought it was a little strange,” they told her. “But we called back and it was the correct phone number.” Kathy had not heard the telephone ring. Lee had managed to turn off all the ringers.

So little Lee, now big seventeen-year-old Lee, then with very few words knew some essential scripts for ordering that pizza. “Cash, yes, that will be cash.” His ability to learn scripts coupled with resourcefulness got the job done.

Now that Adam is willful this story makes me relax and I can laugh a little more. Adam is at an age where he is beginning to test me. He will want things I do not want him to have. He will do things that can really tick me off and I have had a tendency to worry too much. Instead, I should consider that he may even end up ordering his own pizza some day soon (or some other online delivery I imagine, since Adam is incredibly adept at figuring out the computer…perhaps I should watch my credit card!).

The moral of this story? Not only is it good to have a belly laugh at some of the antics of our children, but also, maybe both Lee and Adam will order their pizza and get to eat it too.

Assistive Devices for Autism

Filed Under (Advocacy, Communication) by Estee on 17-03-2010

While Slade is using the Dynavox in this video, I have to attest as we prepare for Adam’s new device (which will not be the Dynavox but a similar device) that this can really change your child’s life. I am so excited that we are entering this new phase of his life soon, and we have done it with the help of others who are experienced in this field.

It takes time to teach the child HOW to use the device and I have to admit that having Adam use the Qwerty board in preparation for receiving this device, it does help with the navigation. One can begin with low-tech options to prepare a child for such communication including PECS (Picture Exchange System) as well as using computers. Adam does most of his school work on a MAC computer to-date, and he has used the Alphasmart Neo to type because it is easy and lightweight. As Adam improves his reading/comprehension skills (expressive output I’m referring to as we never know the extent to what Adam knows), he answers his multiple choice questions one-hundred percent correctly. However, if Adam would be asked a comprehension question in an open-ended manner, he may not always answer correctly.

I encourage people to look at AAC and our institutions to take it VERY seriously in providing this opportunity for our non-verbal autistic children. It is one step closer to enabling their “voice.”

Break Time?

Filed Under (Acceptance, Adam, autism, Transitions) by Estee on 12-03-2010

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

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

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

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

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

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

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

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

Love Goes Deeper

Filed Under (Acceptance, Adam, Communication) by Estee on 08-03-2010

Eustacia Cutler is the mother of Temple Grandin. With the recent HBO program lately on her, I returned to Eustacia’s book, A Thorn In My Pocket: Temple Grandin’s Mother Tells The Family Story.

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

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

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

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

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

hi mommy

i like mommy

i like dinosaurs

mommy feeling sick. Feel happy. Feel better

i had chocolate after lunch

bye mommy

love you

Adam

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

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

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

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

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

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

I know that’s not what you want.

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

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

And it is louder than words.

The Process: More Important Than The Prize

Filed Under (Acceptance, Writing) by Estee on 08-03-2010

In part, this blog was to discuss the process of writing a book and of writing itself. Many people like to think that the end result is easy. Most writers know this is not so. While I’m not a new writer, I’ve not yet written a book.

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

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

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

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

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

It’s Just That Simple

Filed Under (Acceptance, Advocacy, Autism and Intelligence, Autism and Learning, Contributions to Society) by Estee on 02-03-2010

I love this video. It’s just that simple. “You get rid of the autism gene and you get rid of Mozart, Einstein, Silicon Valley…” I love how Temple advocates and it’s this kind of advocacy that assists us in putting ourselves, as neurotypical parents and teachers and therapists, with outrageous expectations, under a much needed spotlight. Beyond listening to her story about “gifts” is an opportunity to consider the disconnect we create when we try to “fix the problem.”

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

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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.