Listen

Now it is no secret that I am going through something – borderline ovarian cancer. I consider myself very lucky. If I had waited and not followed-up with some symptoms last fall, I may have ended up in some Stage 3 or 4 situation, and my chances of living would be poor. Like all parents, my fear is that Adam would not have his mother and that I would miss all of the magnificent milestones he continues to have.



Here’s an excerpt from Michael Bernard Loggins, a man with developmental disabilities who wrote Fears of Your Life:

Fear #33:

“Fear of you never known you were gonna lost your mother is very sad and scary experience you have to face and learn from and you wonder why she has to die I love her – and I had loved her once while she were alive. Especially if she was the mother that raised you and the others through birth and you only wish that you could have done all you can to help save her life. It gonna be worse times and hard times for Michael Bernard Loggins and his sisters and brothers too. Especially when mother’s day comes.”

But my chances seem very good. Except for the unknown – what my next surgery may reveal, I have excellent chances of being totally cured for good. In fact, my first serous tumour was already taken out, and because of the high risk, I must have everything taken out. It’s no secret. Millions of people go through it every day, and they go on living. I know I am supposed to be emotional and mourn some kind of loss, and it may be premature for me to express any of it now, but I’ve had my wonderful child, I have four stepchildren who support him and who I have come to love deeply. While I can’t speak for how I will feel after my surgery, I can say that the most important priority I have is living for Adam and my family.

This post is about listening to your intuition. My intuition is something that I tend to listen to quite closely, and what kept me away from “experts” who really could have done more harm than good for Adam. I intuit people quite well – even though I may want to deny what I feel and “be nice” to people. That’s the way I was brought up -- to be nice. Sometimes I intuit things that frighten me because it sometimes means facing something difficult. I have even taught myself to ignore my intuition at times where people are concerned, only to have learned my lesson.

It’s the same now with ovarian cancer. “Listen to the whispers” is what ovarian campaigns tell women. What a wise line! The symptoms of ovarian cancer are so subtle that women usually do not discover them until they become severe. But I had some. They were small and quiet and they could have been anything. I began with ultrasounds – “it’s nothing,” said the doctors. “Pull out any woman your age from the street and they all have some kind of cyst.” But I wasn’t sure and I didn't feel they were right about me, yet I had doubts -- was I being paranoid? Yet, right from the time I had the first symptom and ultrasound, I had a feeling. I got to see my CT Scan. “You have double spine,” they said. “Look at that!” they were fascinated, pointing to the image, showing me. “Only one per cent of the population have a double spine!”

“But what about my cyst?” I implored, as it appeared dark and with some kind of mass beside it.

“Don’t get hysterical” said a secretary sitting in for the regular one at my geneoncologist’s office. I wasn’t getting hysterical. I was asking prudent questions. Why my CA125 kept going up; why I was getting uncertain results from my CT Scan. “You’ll be fine,” she said with a doctor’s assurance. She is not a doctor.

When I first visited the gyneoncologist in January, after the initial tests and after my wonderful GP seemed to "feel" something too, the doctor took a look at my healthy face and asked me questions. I have a lot of cancer in my family. But she said she wasn’t concerned. She did another CA125 and scheduled my MRI. “It’s probably just an endometrioma,” she said assuredly. CA125’s are unreliable in women my age. The test can rise with endometriosis, PMS, or benign cysts among other things. But mine kept rising.

Then, after the MRI, where I closed my eyes and imagined myself lying on the beach with a soft breeze for over an hour, I fell through the cracks for about another eight weeks. I heard nothing. I thought no news was good news…right? But in March, it was gnawing at me. I called my doctor. They had not received any results. I cringed at the thought of calling that secretary who called me hysterical simply for asking questions, and for making me justify not only my intelligence, but also making me feel guilty for taking up her time.

Immediately following my call, however, I was squeezed in to see the gyneoncologist again. “I was wrong,” she said, and Henry’s jaw dropped – he thought everything would be easy and okay. “It’s not an endometrioma. I am very suspicious.” So I had my first surgery scheduled the following week.

“It looks good,” she said after I was barely awake from the anesthetic, shaking until they bundled me in five blankets and administered morphine. Then, she was gone.

As I was (and am still recovering), I thought that my April 29th appointment for my pathology report would show up benign. Everything was supposed to be fine. Everything in the process of medicine goes so very quickly. Everything can fall through the cracks if you don’t follow up with our own health. It of course showed up borderline, as I mentioned yesterday. This time, she expressed her concern again, and recommended that I have another surgery to take out everything.

The entire time I felt it, even though everyone pressed me to doubt it. Maybe they were just afraid and wanted everything to be okay. Since that time, many of my girlfriends are getting themselves tested, but what I want to express to women is just listen to your own body. While everyone, including some of the finest doctors told me not to worry, and that I would be fine, there has been an issue with each subsequent visit. When my mother was sick for two years with pus running out of her eye, doctors told her it was nothing, until finally she was diagnosed with renal cancer. The point is, people are busy, most cases ARE benign, but it’s prudent to continue to pursue the feelings in your gut.

You have to listen to the whispers, be they physical or something deep inside telling you something. You even have to listen to all your fears and move through them, I think. For my health, listening may have just saved my life. For my son, listening to my own instincts may have, in many ways, saved his, for he is doing really well without popular “interventions.” (Early interventions, folks, are for serious, life-threatening diseases, not for people with disabilities like autism who deserve assistance and an education). The process of studying and educating him has been following him and trusting myself -- not listening exclusively to other people, but gathering the information and becoming selective as to who can assist us. No matter who tells you how crazy or hysterical you are for not doing something that is popular, weigh it all in carefully, study, and then listen to yourself and your child. There may be fear, but we must all use it wisely, not let it use us up. Fear is harming too many autistic children as it is.

As for any fears I have at the moment, here they are so written and to be used usefully, I hope, by anyone who cares to listen.

All Truth Passes Through 3 Stages:

First: It is ridiculous
Second: It is violently opposed
Third: It is accepted as being self-evident

--Shopenhauer

Why I'll Always Remember 2008

I relished in Adam's ability to form friendships with many children this year, and the many children who wanted (and continue to want) to be with him.





I learned who really supported me, even when we had BIG disagreements.
























I am still recovering from my first surgery (with the happy face pendant) and I never knew that a photo with Lance Armstrong could symbolize for me, what lay on the horizon.

Yes, that's right, I'm a writer so I won't hide it, and I don't want pity. I have to have another surgery as I have borderline ovarian cancer. The next surgery will ensure I will live to ninety.

You can bet on it.

And you can bet I will not let anyone complain or compare autism to cancer or a "death sentence," either.


'When I dare to be powerful - to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.' -- cancer survivor.

Difference Is Not Deficiency

Well how many of you were thinking what I was thinking yesterday while watching Rev. Wright's speech on CNN? "Difference is not deficiency" was his message as it related to race and religion. The man had me actually sitting upright in my seat, listening, laughing and enjoying every word and antic. I kept wondering why on earth so many people can't understand disability in the EXACT SAME WAY -- autism is a difference, not an illness, an abnormality or a deviance. Those people unfamiliar with my son's excited hand-flapping may not understand it, and may be so inclined to stare at it, and maybe even further inclined, by virtue of the crap they DO watch on Autism The Musical (I took issue with how some of the parents described their children as "ill." Otherwise, I absolutely LOVED the kids and found them so able and talented), or on CNN or whatever, that autism is a disease so that Adam's excited hand-flapping may seem like a pitiful thing to them, just as much as black skin was viewed back in the day.

Yet, as we were flying home from Florida yesterday, and he was watching a video of FRACTIONS (yes, fractions -- and he's just turned six years old), and he flapped his hands, I really thought nothing of it. In fact, I was joyful as it was something he was learning from (the video). And when he's happy, I'm REALLY happy. It’s his difference. When he’s happy and excited, this is how he will react to his environment. Now who on earth would want to “extinguish” that and why would that goal be so utterly important in those so-called early “intervention” programs? What are we “intervening” in? Aren’t we supposed to accept and assist? Please get rid of that term “intervention” – it’s so entirely insulting.

So it was such an irony this morning, when the big headline was "Hope For the Blind."(why I am turning this CNN on, I'm not so certain except to say I want to know what everyone is being "fed" in the realm of popular media)

Ted Turner -- please hear this: DIFFERENCE IS NOT DEFICIENCY. YOU CAN HAVE AUTISTIC NEWS REPORTERS, GUESTS -- YOU DON'T HAVE TO HAVE THE PRETTIEST PEOPLE. WE WILL ACTUALLY ENJOY WATCHING THE NEWS MUCH MORE IF YOU PUT REAL PEOPLE ON CNN.

Okay, sorry for that rant -- back to “Hope For The Blind.” I hope they get a new headline writer on CNN. Why not just say “new gene therapy offers possible sight for the blind?” They responsibly reported that the therapy is very risky, and only tried on 3 people successfully, and had actually harmed others in the past. Through the therapy, blind individuals cannot see fully just like cochlear implants don't enable deaf people to hear like hearing people do. Apparently, there are sounds, but not perfect hearing and in this case some light but not full sight. And still, not all blind people want to see. As Oliver Sacks has written and spoken about numerous times, many blind individuals don't understand why they would want to change a way they have been their entire lives!!! What a possibly frightening experience to have to relearn everything just because someone else thinks it’s better to see than to be blind?

Is this “intervention” and “therapies” for the benefit of others? Is choice a good thing here? That is, giving people the choice to have implants or not? Gene therapy or not? Or is this an expectation and a mandate under the guise of “choice?” In other words, there is really no choice at all. As long as we view the world as a homogeneous place where stronger and faster and the ability to compete is better (on the same playing field), then there is little choice, isn’t there?

As we move forward in our scientific discoveries, I don’t see the ethics getting any easier. But there’s one guide I do follow – it’s the one where when a “cure” is being preached because people think it’s better not to be disabled, or autistic, then it becomes grotesque. It feels Mengele, Nazi, and it frightens me that CNN as a channel has the power it does to dictate people’s lives and the way they think about everything. This is not “Hope for the Blind,” this is gene therapy being offered – and it could be the utter “Hell for the Blind” too.

When will our world understand that there are millions of people who live differently than many of us do? And not everyone wants to live like an American (or Canadian or whatever in the "first-world")? If we really want to know how the rest of the world lives and feels, then we have to watch their channels and read their books and listen, not assume.

I am happy to announce that I am a new graduate student of Critical Disability Studies at York University. I hope to continue discussing the differences in disability as they cross section with our discussions about race and religion, in much greater detail in the near future. Thanks to all of you who supported me through this.

The Autism Acceptance Project Update

Many people are emailing me asking to read Adam's blog as it will soon go private. This is wonderful and I thank you for revealing yourselves because Adam's safety is very important. If you are interested, please email me at estee@taaproject.com.

Aside from this, many of you may not know that The Autism Acceptance Project (TAAProject) sends out monthly newsletters and regular Newsflashes. Our e-mailing list is growing quite a lot and there's a lot of information in those newsletters that may not be in the blog or on the TAAProject website (www.taaproject.com).

If you are interested in receiving newsletters, please email me, being specific in the subject line (RE: NEWSLETTER) and we will put you on the list (estee@taaproject.com)

Precious Growth

As many of you know, Adam is really taking to typing. In two months, the typing has also instigated more talking in full sentences. It's as if I've offered him a window and now the floodgates are opening.

Let me begin by also saying that last week, Adam grabbed his own device in school and for the first time ever, asked for his father -- "daddy," he typed. He was asked again if he wanted daddy, and he typed that he did.

His magnificent shadow -- a young woman who has been with us for four years now -- told him that daddy could not be there and he was at work. She suggested that he instead draw a picture for daddy. Adam has drawn pictures before. Sometimes he writes mommy on them (well, he did once anyway), and he has definitely asked and typed for mommy a few times, but he has never drawn a picture for me without the bidding of some teacher's project.

Adam has never asked for daddy before and I wonder if it's because I've been in bed recuperating, and dad has had to step in with Adam a little more, that Adam has truly relished it. So, completely unaided, Adam did the drawing below for daddy -- he wrote his name, daddy's name, car, and drew his rendition of a car.

Needless to say, this picture is being treated delicately like an old Leonardo da Vinci drawing -- so light and delicate is Adam's hand that you can see his struggle for control -- which is why we're grateful for typing devices. If you saw him write letters by hand, you would also see his steely determination with the gargantuan challenge. This work of art will be well preserved, framed and displayed in an area for all to see in our home.





So a few things are happening in my mind these days about Adam, typing, communication and expression, and I wonder if many parents of non verbal children, or whose child's expression is delayed in various ways, feel it too.

First, there is a burst of language in sentences coming out of Adam as a result of starting our typing together. It's still not always clear, mind you, but he's talking more. It seems to have sparked something in Adam -- something that was already there, but perhaps didn't have the courage or know-how to come out, and it simply needed the little push. Think of it like opening a window in a room swirling with words, letters and thoughts, growing by the minute. That's how I like to think of it and the rate at which Adam learns.

Second, his drive to do that picture for his father completely on his own, I believe, also has to do with this window-opening as well as his need for relationship with his father, and just turning six and saying some very interesting boy-things, he needs a male role-model in his life.

And third, as a result of this new form of expression for us in this family, there are questions I have of myself as his mother -- the mother of a son first, a child second, and an autistic child, third.

This very intelligent little boy, with so many thoughts and conceptions of himself in the world, and IN RELATION TO THE WORLD, while I knew were always there without spoken language, has suddenly manifested in so many typed views of himself. It's not quite like having a child who is natural with spoken language -- the precocious little talker who always asks "why?" At least a parent gets a sense early on of the depth of responsibility in holding a child's ego like an egg in one's hand. Maybe (I can't say as I am the mother of one child and a step-mother to four whose own mother served them well), a parent just gets sort of immune to the child's ego. Maybe they learn ignore some of the precocious talking. Maybe they know when something serious is being said, and when something said is just an experiment.

For Adam, I believe that the same thing has happened and has always been happening, even before the typing. In some ways, it bothers me because Adam's ego and his thoughts and his way of thinking of himself in the world has always been there. All of those things I just mentioned, have always been there. His sense and ability to see people and know them -- like the child in the Emperor Has No Clothes -- has always been there. Yet, like many autistic people, he has been treated by many people (not all, thankfully, but many) that he never had the ability or capacity for such thought, such depth, such relationships.

My Adam, who notices how boys "should" behave and how he is "different", well -- tell me please -- how do you hold that precious little ego as it grows by leaps and bounds in your hand?

Out From Under

The Royal Ontario Museum in Toronto presents exhibition on Canadian disability history


The Royal Ontario Museum (ROM) is proud to present Out from Under: Disability, History and Things to Remember, a powerful exhibit exploring Canadian disability history. A display of 13 diverse objects reveals a rich and nuanced history that pays tribute to the resilience, creativity, and the civic and cultural contributions of Canadians with disabilities. The first of its kind in Canada, Out from Under was produced in collaboration with students, scholars and alumni from Ryerson University and will be on display on Level 3 of the ROM's historic building from Thursday, April 17, 2008 to July 13, 2008.

Gregory L. Blackstock

My son's gonna love this book. Gregory Blackstock, dubbed "an autistic savant" by Darold Treffert, is also called "an everyday anthropologist."

At age fifty-eight, [he] began a new and exciting chapter in his life. The retired pot washer walked into Seattle's Garde Rail Gallery to attend the opening of a solo exhibition of the drawings he had made over the past eighteen years, the results of a consuming pastime relatively few people knew about. Beaming with accomplishment and self-esteem, he introduced himself to complete strangers, escorted them to the pieces of his work, and urged them to read a newspaper review of the show posted on the wall beside his biography. -- Karen Light-Pina





Adam loves encyclopedias and dictionaries and he examines every bug, every stuffed animal. The book arrived this week as I recover from surgery and I have a sneaking suspicion it might be one of his favorite books of all as he studies each meticulously drawn category -- of birds, tools, musical instruments and more.







I feel as if I've come upon a treasure of a book as if it were tucked away in a small Parisian bookshop -- where collectibles are as much valued as is Versailles, Monet, baguettes and cafe au lait -- each shop displaying historical relics to be resold over and over again, and hopefully to never lose their significance as marks of both man and time.

It's the same feeling I get when I look at Joseph Cornell's Shadow Boxes -- that collectible spirit made into art. Cornell is another artist speculated to have been autistic. Collecting is a kind of spirit, or at least a spiritual act. I'm in the spirit to collect these days. I've not normally been a collecting kind of person. I admire the level of interest in detail and passion a collector has to have. I've been watching Adam collect rocks recently, and plastic animals and airplanes. I've turned my head to honouring his and perhaps my own collections as much as the thought process and sheer passion that goes into them, with particular displays and presentations -- artful in and of themselves. We give objects significance when we place them carefully in the architecture of our lives.







As I still lie in bed (second week now) recuperating and working from here, I've been bidding on antique typewriter letters on eBay for Adam, and a few old and electric typewriters, thinking of how he may love the clicking sound, and considering making his new bookshelf embedded with typewriter letters. I'm sure my husband will shake his head wondering where I'm going to put all of these typewriters -- but I have my ideas. I am also thinking I may be punished for throwing out all of Henry's old wine bottle corks -- so I hear cork is becoming 'extinct.' There they sat taking up precious basement space in large plastic bags, if not a testament to the wine, at least one to Henry's love of it. He said of them just lying there, I can make cork boards. Wouldn't that be a fun project? That was about ten years ago. He has has since taken up golf.

Adam's fascination has opened up new worlds for me and I want to spend time, well...collecting not only myself, but the things that make our lives meaningful. For things are only things until we give them a place in our lives - for better or for worse. I think the things that we love should be our relics. We should give them places of honour. They do, after all, mark our time here upon this earth. They say, I WAS HERE. I EXISTED. MAYBE I EVEN MATTERED. AT LEAST THESE THINGS MATTERED TO ME.

Adam's Blog

You can begin reading Adam's own words here:
www.adamwolfond.blogspot.com
This blog is open for the time being, but will be made private (invitation only) very soon to protect him. If you are interested in reading his blog, please email me at estee@taaproject.com as soon as possible.

"Play With The Cards We're Dealt"

To all those parents who complain about their autistic children (or how difficult life is), a few lessons from a dying man:



Note: I had previously titled this post "I'm dying and I'm having fun" which is a direct quote from the video. Alyric said I had frightened her so I realized I had better change the title pronto. Sorry folks!!

As We Are

This baby born in India with two faces, says The Globe and Mail, "is doing well and being worshipped as the reincarnation of a Hindu Goddess."

"My daughter is fine, like any other child," said her father. "She is leading a normal life with no breathing difficulties," said Dr. Ali, who saw no need for surgery.



The ignorance in the way we express our familial difficulties in having autistic children is boring and tiresome. It is systemic -- we live in a culture that overspends, overworks and over-competes and these qualities together are supposed to comprise our identities. We complain on air how "difficult" autistic children are on parents and teachers instead of espousing them. Who cares about difficulty? I mean, our entire lives are meant to be difficult! But it need not be AS difficult if we can change the way we view things, which in turn effects the way we treat and accept people.

I am very disturbed at how trite our talk about autism and disability has become. I've said it before and I'll say it again, accepting autism does not mean preventing autism. It does not necessarily mean curing it, either. I am not going to speak for my son when he gets older -- I expect he will speak for himself. But I certainly do not wish to waste his precious time fighting for him to become something he is not when he can be successful as he is. Why does being "happy" with or without autism, not have to include sadness? How else would we feel one without the other?? How do not other "normal" (hate that word as you know, but I use it facetiously) children and families go through strife? And yet, look at little baby Lali above.

I suppose my happiness comes from my critique of our existence and how we look at things. I'm going through a phase of disgust with the media -- as we all know it's one big money making entertainment machine. I mean, do you really trust the newspapers you read? I hope we are all reading more than our national newspapers and CNN headlines!

As Elizabeth Gilbert said in Eat Pray Love, "people tend to think that happiness is a stroke of luck, something that will maybe descent upon you like fine weather if you're fortunate enough. But that's not how happiness works. Happiness is the consequence of personal effort. You fight for it, you strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings. And once you have achieved a state of happiness, you must never become lax about maintaining it, you must make a mighty effort to keep swimming upward into that happiness forever, to stay afloat on top of it. If you don't, you will leak away your innate contentment... the search for contentment is, therefore, not merely a self-preserving and self-benefiting act, but also a generous gift to the world."

I started reading Gilbert's book just before I went into surgery. Adam said I was reading "sad" books (his interpretation of my furrowed brow), so I said screw it, I'm going to read something light. When I read that paragraph of hers, it's melody sounded like a jazz line that could tie in with my Joy of Autism mantra above, at any point in the jam.





In a way, that's how I see disability studies and art. It's about being happy when we can touch our sadness, our selves and connect with what unites us. It's a way of digging deeper and hopefully shoving out those kitsch and trite notions we espouse on the air and in too many self help and autism "acceptance" books. What about digging a little deeper not into what it FEELS like just for a parent of an autistic child, but take a look into the lives and creations of ordinary people -- disabled people. For if we are all human, I am disabled too.


In honour of Petra Kuppers and her work and her website, I found this poem by Neil Marcus:

The Nude

by Neil Marcus



Nude we are
As sunbeams
As light
As moonlight
In darkness

There is a slow burn in the nude
A passion
An expression
That only a nude can tell
An opening into another dimension

soft flesh, hard muscle, gentle hair, speaks quantities
Elegant
Needs no explanation
Or justification
Just is
Can only be
What we cannot say with words

We are cripples
We are exquisite creations
Is there a shame to resolve ?
Freaks of nature or Precious Beings of another kind of second sight
Look again
Think twice



I wish to speak the unspeakable
The hidden
The secrets I have hidden
Insatiable DESIRE
Longing intimacy
Fierce intimacy
Ravenous touch
Total exposure



I wish to expose My Gender. My Sex. My Love. My Passion
These words are not just hollow affirmation
I dare speak clearly only in silence

They are my form
My disability
Naked to the world

Spasm to the world.

----

Don't we all want to be seen?
I know that Adam does. And he won't want to be seen through the veil of misery, but just as he is.

Something Cute (to ease the tension)

Ah yes, Passover is coming. Our young ones are being exposed to their first field trips to the matzah factory.

Here is Adam's take on matzah that left me in stitches so bad, my newly cut abdominal muscles nearly split open again:

Me: I heard you made matzah at the factory today. How was it?

Adam: read it was pool.

Me: why was the matzah factory like the pool?

Adam: because it papa you to interesting eat it eat ugly

Me: is matzah ugly?

Adam: yes factory yes

Me: does matzah taste good or bad?

Adam: bad it tastes like poo like eat

----

Well, I can't blame him for being honest, no matter how far back his ancestral recipes for matzah brei may go. To Adam, you just can't dress up a plain-tasting cracker.

In Support of Kathleen Seidel And Her Work

For her outstanding research, our dear friend Kathleen Seidel is being subpoenaed because of her exposure of the nonsensical vaccine controversy which you can also read at Respectful Insolence.

Subpoenaed · Apr 3, 08:45 AM

A week ago yesterday, I was served a subpoena commanding me to appear for deposition and document production in Rev. Lisa Sykes and Seth Sykes’ $20,000,000 personal injury lawsuit, Sykes v. Bayer (Case No. 3:07-CV-660, Eastern District of Virginia, Richmond Division). On Monday, March 31, I filed the following Motion to Quash pro se in the United States District Court for the District of New Hampshire. The motion has been assigned to Magistrate Judge James R. Muirhead for consideration; the issuing attorney, Mr. Clifford Shoemaker, has two weeks in which to respond.

I urge readers to read her motion to quash the subpoena here.




Kathleen is a fastidious researcher, and it is truly frightening how far certain parties are willing to go to prove that vaccines cause autism, which science has proven otherwise.

I also appreciate this video by Stop Think Autism: "I am also Kathleen" :



Which leads me to a point that Jenny McCarthy raised on Larry King when she held up her "vaccination chart." She held up a sign of what appeared to be a list of twenty vaccines our kids supposedly receive as young toddlers. But hey, Adam didn't receive all those vaccines. He may have received maybe four of them. And recently, he got his polio shot as he turns six. Similarly, as I wrote in my essay, The Mismeasure of Autism: The Basis of Autism Advocacy, I would like to remind readers of the hundreds of unproven "therapies" and holistic and medical potions administered to many autistic kids today in order to "detox" our apparently "enviornmentally toxic" kids. I wonder how "safe" they are?? If it weren't for Kathleen and the other reputable scientists working on behalf of protecting our children's health and their fundamental right to be autistic and treated with respect, I would not know where Adam would end up except in the hands of people who might literally torture him with their inhumane methods.

All I can say is the rot is rising and it sure stinks.

Behind the Lou Dobbs Smile

Lou Dobbs made me cry.

Maybe I was more vulnerable this time. I had cancer surgery on World Autism Day. I do not have cancer, and if I did, it is most likely gone now I am not going to tell anything more about that until I finish my book, so you’ll have to wait. So excuse me for being a little emotional as I recuperate, watching re-runs from “World Autism Day,” on CNN. I was thinking about this as I as being prepped, thankful in a way that I would not be watching the TV that day -- sorry, almost, that I felt compelled to watch it afterwards, holding my wounds, the words of some of its reporters pretending to “do good” almost cutting me deeper.

"We have to do something about this ugly, ugly, ugly disease,” Lou Dobbs said emphatically, talking to Dr. Thomas Insel. That’s when my tears flowed. I imagined my Adam listening to his words flowing in between his denture-like smile, self-righteously saying that autism, my son’s way of being in the world, is ugly. Mr. Dobbs has obviously never met Adam or any other autistic adult. He cannot even fathom the joy we experience everyday when we are together (Adam and I, that is), and the utter sadness when people like Lou Dobbs goes on air to talk to millions of viewers of what he knows absolutely nothing about. Autism is so “terrible” everyone is saying, that I felt so terribly sad for all the parents out there fighting for services, for their children’s right to be valued and accepted, to be educated, and to contribute to the world. That’s our fight. It is what unites me with everyone who also loves their child and just wants them to have the best in life. It's what unites me with all the autistic adults who say the same things and are constantly ignored in favour of the parents! No, our fight is to change the education system to include all children of all kinds of learning abilities, because it is representative of the world we live in. Our fight is not to eliminate autism, because that then threatens the lives of so many people who are born with different disabilities (or who may age with them), and who cannot become a part of our world. So, I think Mr. Dobbs and CNN owe millions of us parents and autistic adults alike, an apology because,

Lou Dobbs has never seen Adam laugh so fantastically that it would make the entire world glow.

Lou Dobbs has never felt Adam’s arms wrapped around him so that everything in the world would make utter sense to him – even immigration policy.

Lou Dobbs has never received a kiss from Adam against his cheek that would make him stand up for Adam’s human right to be and live a full life as an autistic person, in an instant.

Lou Dobbs has never seen Adam laugh with his friends – something it took him a while to do, and something that one never ceases to appreciate when it happens – the true value of real friends.

Lou Dobbs has never seen Adam read Henry VIII at the age of a year old.

Lou Dobbs has never observed the interesting games that Adam is capable of creating on his own.

Lou Dobbs has never seen Adam begin to type sentences with such meaning that Lou would understand the depth of understanding of humanity that a five-year-old autistic boy can possess.

Lou Dobbs has never witnessed Adam pulling his mother and father's hands together when they are fighting.

Lou Dobbs has never seen Adam work so hard in a world that doesn't spend time to understand him, and who can also learn many things so easily in his own autistic way.

Lou Dobbs has never seen a child who wants to be so social, but who lives in a world with little patience. If Mr. Dobbs would make some time to spend with Adam, I know he would understand.

Lou Dobbs has never spoken with autistic adults who struggled against the stigma of “horror” and “ugliness” that the much of the world believes autism and disability is, and who today, can tell us all about it.

Lou Dobbs does not seem to understand the difference between challenge, struggle, sadness and joy and how we can never separate all of those human feelings. We can never make life more perfect than it already is. We can never separate the vastness of all these feelings for we would be a risk of being numb – smiling with whitened teeth without really knowing happiness at all. (Okay, I’m picking on your white teeth, Mr. Dobbs, but you have to take a little tit for tat because you hurt us so much, even if unknowingly).

No matter where you stand on spectrum of autism politics, I cannot imagine that not one parent or autistic person listening to Lou Dobbs would not want an apology. Adam has passed the television set a few times listening to these horrific reports. I’ve muted the volume. I never want him to hear anyone say that he’s ugly, or that his autism is. It is only Adam’s right to express what his autism means to him – not a non-autistic person’s. It is NOT OUR RIGHT TO JUDGE WHAT AUTISM IS OR MEANS TO AN AUTISTIC PERSON. We may relay what it means to us as parents, but that is only less than half the story. It’s time CNN put some autistic anchors on their shows about autism. It’s almost too late. CNN has made a lot of people perhaps so depressed. And it is not depressing to live with autism.

Our agenda, and the agenda of CNN (if they want to help) is diversity and inclusion. My child will give the world many gifts as many autistic adults do today – from software developers, to writers and artists --- these are things, folks, that are not trite – they are to be utterly valued as a part of who we are.

I don’t want whitened teeth and a fake smile and I'm fed up with pretty anchors on CNN. I want to see more disabled anchors -- truly representative of our world. I want to know happiness and I know it’s wrapped up in all of those complicated emotions that we all feel every day. From pain and suffering that makes the quietest joy like the faint sound of a flute playing in the dark of night. We look for those tiny lights that illuminate the meaning of life, that give us air.

I want Lou Dobbs to meet Adam. I even want to shake his hand and say thanks for the effort if he makes it at all. I want Mr. Dobbs to find out what the meaning of life is, through Adam the way I think I’ve found it with Adam and many others like him. I want CNN, if they want to “help,” to work towards a world of inclusion as the amount of disabled people, as our population survives longer and longer, will inevitably grow.