Tag Archives: travel

Another Year…

It’s been eleven days since anything was posted on this blog, the longest stretch, in the more than four years of its existence, that it has lay dormant.  It was not intended, but instead just happened.

This has been a year of incredible transformation…  I’ve turned a year older today and yet see how much there is to still learn.  Learning and traveling…  nothing makes me feel more alive, more happy, more eager.  And because of my daughter, I am learning more than I ever believed possible.  But that is for another post(s).  Today…  today is a day I am celebrating my family, friends and beautiful life.

Coyote looking back at us with the same curiosity we were viewing them.

Coyote roaming the ranch, looking back at us with the same curiosity we were viewing them

Heading out on a hike

Heading out on a hike

One of a number of bucks who hang around the barn...

One of a number of bucks who hang around the barn…

Sunset - The Rocky Mountains

Sunset – The Rocky Mountains

A rare photograph of  Richard and Ariane together as Ariane is usually behind the camera and not in front of it… Photograph taken by John Kelly.

A rare photograph of Richard and Ariane together as Ariane is usually behind the camera and not in front of it…
Photograph taken by John Kelly.

Wishing all of you a wonderful day.

More will be revealed…

“Be Patient With Me…”

“Be patient with me, Mommy.”

This is what Emma wrote on the airplane coming home when we were delayed yet again.  This was what she wrote after spending four hours waiting to board the aircraft, an aircraft that never took off, a plane that sat at the gate for another two hours waiting for the pilot to show up, an airplane that we then had to de-plane when that same pilot never arrived, forcing us to stand for two and a half hours in the airline’s customer care line, only to be told we would not be able to get home for three more days, oh and by the way, our luggage was nowhere to be found.  Oops.  Sorry.  Shrug.

“Be patient with me…”

There were tears and a struggle to contain the overwhelming feelings of panic and exhaustion.  Cries and fists that pummeled, teeth that bit, flailing limbs, and I was right there, wanting to do the same.  Wanting to lash out.  Wanting to scream and do something that would make it all go away.  Change reality.  Change these feelings.  Change these circumstances.  Scream.  Disappear into the screams.  Clench my jaw, grind my teeth, breathe, clench, grind, breathe, clench, grind, breathe…

“Be patient with me…”

“You’re impatient,” people have repeatedly observed and thought to tell me.  Yeah.  I know.  That feeling that begins as mild anxiety, builds into an almost impossible feeling of discomfort…  the feeling that if I don’t DO something, anything right now, I will die… that’s my impatience.  I get that now, though I didn’t always.  It used to be I didn’t know what those feelings were called, I just knew I would do just about anything to avoid them.

“Be patient…”

There’s an ongoing irony to parenting.  How many times have I admonished my children to do the very thing I lack or am incapable of?  I remember going to a parent/teacher conference at my son’s school.  He was in grade school at the time and the teacher made a comment about how he needed to work on building his tolerance for frustration.  I replied, “Yup, that’s something his mom’s still working on too.”  The teacher looked at me with surprise.

“Be patient…”  

I try.  I am trying.  But don’t use me as a model.  I’m not very patient.  I tend to be controlling too.  I don’t like when things change suddenly, I feel calmer when I know what will happen next.  I don’t love spontaneity, it messes with my sense of order.  And once I’m in overwhelm, once the feelings are coming at me so quickly, I cannot access my thoughts, it doesn’t occur to me to say to the person I’m with, “Be patient with me…”

But my daughter did.  My daughter was able to get in touch with what she needed from me during a time of heightened distress.  So who was helping whom in that moment?  Was I helping her or was she helping me?

“Be patient with me…”

Em & N. ~ 2010

Em & N. ~ 2010

Travel, Friendship and Sensory Overload

A couple of days ago my friend Ib, of the blog Tiny Grace Notes, whom I was staying with, drove me to the airport.  Ib knows me pretty well and could tell I was nervous, as I have become increasingly as I get older, about getting to the airport, going through security and making my flight, even though we were leaving ample time to do all of that.  Still the combination of nerves due to traveling, my busy work schedule, being away from my family for so long, being tired and going to an unfamiliar airport had me on high alert.

It was snowing a little so we needed to have the window wipers on or Ib wouldn’t be able to see well enough to drive safely.  But the wipers made a scraping noise that I found almost intolerable.  Every time the wipers ran across the window they vibrated and made a noise that was akin to finger nails being raked along a chalk board.  It was jarring and I could feel my body tense, so I gritted my teeth and began an internal dialogue with myself to try to calm and as I did all of this, I thought of my daughter.  I thought about what it must be like to be bombarded with sounds and sensations that she cannot speak of, or if she does speak of them, the words that she speaks are not what she intends to say, so people are left confused, asking questions or simply ignoring.

As we drove and Ib, being Ib, had already sensed my tension and anxiety and was doing everything in her power to take care of me, I thought about how it is only recently that I’ve become hyper aware of certain sounds, sights, tastes, smells, and how things feel to the touch.  It is because of my daughter and other Autistic people I’ve met and/or read and heard speak about such things, that I have begun to see how, things I once learned to ignore are now things I cannot ignore, like those window wipers scraping against the window and making me so upset it was all I could do to sit quietly and not begin to cry.  I am grateful for this as it makes me far more understanding of what my daughter and others might be going through at times.

Ib began to very quietly and gently tell me what she was about to do, before she did it.  So, for example, she would say things like, (I’m making this up as I can’t remember her exact words now) “just up ahead I’m going to slow a little and get into the right lane” or “the exit we want is in another 2 miles to the left” or whatever it was, she would say these things in that lovely, mellifluous voice of hers and I began to calm down.  Ibby was modeling, actively demonstrating what I need to do for my daughter.  She was also being a kind, sensitive and deeply compassionate friend to me and I sat there, my eyes fixed on the traffic around us, feeling so thankful that I know her and am friends with her.

As we drove along and I began to relax a little, I imagined a place where non autistic people would go where they would be given the very real experience of what it might be like for an Autistic person.  I fantasized that there would be all manner of sensations, highly elevated and constantly changing as examples of what might be another person’s experience of daily life.  Just as I found those window wipers so harsh and grating that I could not engage in conversation, I imagined that this place would both bombard the person as well as under stimulate so the person could experience what it is like to alternate between not being able to hear, taste, see, feel, smell and during all of this, demands would be placed on the person.  Not just demands, but the person would be required to answer questions within a specific time frame and if they didn’t answer or got the answer wrong they would be required to go back and start all over again.  However regardless of whether they got the answer right the sensations would remain, the things they would try to do to calm themselves would not be allowed or taken away and they would be forced to stay in this place indefinitely.

As Ibby helped me retrieve my bags from the car I felt tremendous relief knowing that I would be able to manage the curbside check-in, knew I would not lose the ability to speak, knew I would be able to find the correct line to go through for security, find the correct gate and wait for my flight.  All the things I do without thinking, without questioning, things I take for granted.  But I also was aware that this relief is not what others, others like my daughter, necessarily experience.

Returning Home

Em and I returned home Friday night.  It was an exhilarating trip, but also an exhausting one.  These trips always are.  We went from having daily sessions with Soma (you can read more about Emma’s experience working with Soma ‘here‘, ‘here‘ and ‘here‘ and more about Soma and RPM by clicking ‘here‘) that were so incredibly exciting, I could barely take in all that my daughter was writing.  Personal, gut wrenchingly, painful insights, loving notes of gratitude to my husband and me that made me weep with joy, but also bittersweet because it is she who has had to put up with us and not the other way around.  Her writing displays an almost unfathomable intellect, wisdom beyond her years as well as compassion and patience for all who do not understand her, for those who doubt, for those who do not believe her and all she is capable of, for all who talk down to her, my daughter is a beacon of kindness, forgiveness and compassion.

I do not want people to come away with ideas about saintliness, holiness or angels being dropped down from the heavens and inhabiting her body.  I cannot and do not believe in any of that and it dismisses the many challenges and struggles my daughter must endure.  Above all else my daughter is a human being, just like you, just like me, very much grounded on this earth and in this life, but she is also exemplary in her ability to see the good in others.  It is something I am trying hard to emulate.  It is as though the more she writes about what she believes and thinks, the angrier I become.  The more enraged I am that we have all believed so easily, without question, the standard assumptions about Autistic people and autism and what that means.

I understand that for many they just cannot believe someone like my child is capable of knowing so much despite having had little formal education, but instead has spent all of her school years segregated in special education schools where she reads below age level literature and is taught the value of nickels, dimes and pennies because it is assumed she does not understand concepts such as money and time.  I understand.  I do.  I was one of those people not so long ago.  But now I know otherwise.  We are fortunate that her current school is open, willing and interested in learning all she is capable of.  They have expressed interest and their intent to support her and to help in any way they can.  We will be revising her IEP soon.  It will be quite a revision!

Now we are home and I know better than to expect I will be able to pick up where Soma left off.  I know better than to think I will be able to sit down with my daughter and accomplish the same level of writing I witnessed this past week.  I have to pick up from where I left off before our trip to Texas.  This can feel incredibly frustrating and even depressing, but I am learning to not delve too deeply in despair, but rather continue moving forward with the knowledge that I will and already have progressed in my ability to support my daughter better each day so that one day she will be able to converse with me on a similar level as she does with Soma.

This disparity between what Soma is able to do and what those at home then try, has caused a few to claim that therefore Soma’s method is flawed or is cause for suspicion and doubt.  What I have come to understand is that my Autistic child is intensely sensitive to her relationships.  I cannot sit down and expect to have her write to me as she does with someone who developed this system and who has fine tuned it, perfected it along the way, while working with close to a dozen people every day for over ten years now.   It is akin to expecting that I will be able to set a diamond as well as a master jeweler who has been perfecting his craft over the last twenty years or after taking a painting class be able to create something on par with Rembrandt or after taking French 101 go to France and speak fluently.  We do not expect any of these things from each other or ourselves, and yet, people decide something like RPM will be easy and simple and anyone will be able to do it instantly and when they cannot, the flaw is in RPM.  I have met too many other people who are practicing RPM to see that it is this thinking that is flawed.

Em chose toenail polish for both of us!

Matching toenails

A Word of Thanks

Em and I are traveling again, so after publishing Emma’s post debut, and what a first post it was (!!!!), for the “This is Autism Flashblog” we got on an airplane.  As we didn’t get to our hotel until after eight in the evening, we didn’t read all the lovely comments so many of you left until quite late.  Thank you.  As a parent it means a great deal to have such an outpouring of support and encouragement for Emma’s first post, particularly as it was a post that was incredibly personal.  Emma wrote, “Thank you everyone”  before falling asleep.

The flashblog has almost 250 posts at the moment.  It was a wild success and shows the range and complexity of views about what exactly “autism” is.  Anyone who hasn’t gone over there to read what others had to say, I encourage you to  spend some time doing so.

There is so much I want to say about the flashblog, autism, grassroots protesting, being the parent of a child whose neurology I do not share, but have overlaps with, functioning labels, how we can all influence change, how the more of us who join in, the quicker these shifts will occur, why I keep showing up here day after day instead of sleeping for another couple of hours, but I don’t have time this morning as we have an appointment in another hour that we cannot be late for.

Thankfully I had the foresight to opt for a GPS system on our rental car and do not anticipate getting lost as I did the last time we made this trip.  As a testament to this decision, Emma did not once shout from the backseat, “Oh no!  We’re going the wrong way!” last night, for which I am extremely grateful.

The adventure continues!

Em

Our Amazing Adventure

Emma gave me permission to blog about some of our day yesterday.  I asked her, “Is there anything you typed that you do not want me to write about?”  She typed, “No.”  So… here goes…

We are in Texas to work with Soma Mukhopadhyay.  I’ve written about Soma many times before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  By the way, Tito, Soma’s son (who is non-speaking and autistic) is the author of several books.  I highly recommend all of them.

Soma began the session using a stencil board and having Em point to the letter she wanted with a pencil, then took the pencil, wrote the letter down, handed the pencil back, and on they went.  By the afternoon session Em was pointing to the first letter and then the next and the next, spelling out whole words and even several words before Soma wrote all the letters down.  As the sessions are all being videotaped, the stencil board is by far the best thing to use, as it is clear when you are watching the tape, which letters Em is pointing to, where as a laminated letter board, or a keyboard would be more difficult to see as clearly.  Soma does not touch the person she is working with.  There is no physical contact of any kind, unless initiated by the other person.

Some people have accused Soma of manipulating the stencil board.  I have watched Soma work with my daughter many times, as well as with other students and beyond the natural slight movement that occurs when holding an object with one hand, I have witnessed no manipulation of any kind.  With Emma she used a full alphabet stencil board, so even if one wanted to somehow make her point to a particular letter this would be impossible without physically touching her.

They began discussing the weather and Em wrote that she likes it when it is windy.  Soma asked her to tell her anything at all about windy weather and Em wrote, “flying leaves”.  They then discussed temperature, how heat rises, the sun, and finally Soma asked her for the name of any state.  Emma wrote, “Colorado”.  Soma asked her why she chose Colorado and I smiled knowingly, believing that I knew the answer and expecting her to write something about how this is where her Granma lives and where we go to visit several times a year.  But Emma had something else in mind.  She went for the letter “b” and then wrote “Boulder”.

Okay, I thought.  Boulder, that’s kind of weird.  Richard’s best friend lives in Boulder, maybe she’s thinking about Steve.  Meanwhile Soma asked, “What happened there?”  And Emma wrote, “flood”.  And I sat there stunned.  You see, we are not a family that ever turns on the television unless it’s for a pre-recorded show or to watch a dvd.  We do not listen to the radio.  We no longer have the NYTimes delivered to our house as both Richard and I receive it online and read the news from our iPads.  Neither Richard nor I spoke (that we can remember) about the devastation that occurred because of the flooding in Boulder recently.  And yet, there is absolutely no doubt that others have and did discuss the floods in Emma’s presence, though it’s doubtful anyone spoke to her about them and yet here she was, writing about the floods.

The afternoon session began with Emma choosing “story” from a choice between “story” and “number”.  Soma proceeded to tell a fable about a crane and a fox who were friends.  The fox invited the crane over for dinner and prepared meat for the crane which was almost impossible for the crane to pick up with his beak and the fox watched with great delight as the meat fell from his beak over and over.  Soma talked about how the fox was having fun, but mean fun and throughout all of this asked Emma clarifying questions about various words, all of which Emma knew without hesitation.  But the fox underestimated his friend the crane, Soma continued.  She then asked Emma what she thought about the word underestimated and Emma wrote, “less expectation”.  The story continued with the crane being polite and asking the fox to come over the next day for dinner at the crane’s house where upon the crane served the fox soup in a jar that the fox could not drink, except to lick the sides.  Soma then asked Emma for the moral of the story and Emma wrote, “do unto others”.

Soma used Emma’s interest (anxiety?) about the time and how long the session was going to last, to discuss time and the calendar year and then asked Em “how would you like to be treated by others?” Emma wrote, “I want to disappear when people talk about me.”  Soma asked a clarifying question about situations that she was specifically referring to and asked if Emma felt that way when people said nice things.  Emma said, “no”.

Later, using a laminated “yes” or “no” card that Rosemary Crossley uses and gave us, I asked Em more about this.  It came out that people are “mean” to her on the school bus.  I asked her if people were mean to her at school and she wrote, “No.”

Today we go back for Emma’s next two sessions with Soma.   As they say in the 12-step rooms – more will be revealed.  I cannot write about how I feel, other than to say, Soma is doing amazing work.  She has been doing this work for close to two decades, everyday for hours at a time.  I am learning a great deal, but will I be able to replicate what she is doing?  No.  I won’t.  Not yet, anyway and I don’t expect to, but I can get better with practice and I can apply what I see Soma doing with other things I’ve learned that Emma has responded to.  But more than anything else, I can continue to stretch my limited mind and limited thinking, (my neurological deficits) and practice, continue to practice expanding my knee jerk “truths” until one day perhaps I will no longer feel incredulous at what I continue to witness, not only with Soma, but with a great many people, all of whom have devoted their lives to finding ways for people like my daughter to communicate.

I want to disappear when people talk about me.

*I have read this to Emma to make sure what I’ve written is okay to publish.  She has given me her permission.

Soma and Emma

Soma & Em

Traveling Without A GPS

I’m traveling with Em.  We’re doing a kind of mother/daughter trip together, though not, as Em would like, to a spa where we sit around getting our nails done, (Em has fallen in love with the joys of a good pedicure) go swimming in heated pools that are like massive bath tubs and doing nothing else… that trip will have to wait.

And I made the mistake of opting out of the GPS system for the car I’ve rented, which means every few minutes Emma can be heard saying from the back seat, “Oh no!  You’re going the wrong way!”  And because I have no sense of direction, am driving in a state I’ve never been before, let alone city, she is correct.  We have been here less than 24 hours and have gotten completely lost, despite thorough directions from google maps (which suck, by the way, I’m totally blaming google maps) FOUR times!  This is not an exaggeration.

It seems I cannot drive more than a few miles without taking a wrong turn, end up inexplicably going in the opposite direction from where I meant and wanted to go.  So I’m like one of those annoying drivers who’s leaning forward, peering out the window, both hands nervously gripping the steering wheel and driving so slowly I’ve got a line of cars in back of me, pissed off and trying to get around me. But I won’t pull over because I don’t know where the hell I am and… Yeah.  That’s me in that car you’re honking at.  And that GPS system that I turned down, because really, at an additional 20 bucks a day or whatever it was, who would think that was a good idea?  Um…  it’s looking like a bargain, right about now…

This was not always the case.  When I was in my late teens and all through my twenties I lived and drove all over the place.  I lived in LA for three years, a city where you spend more money on your car than you do on your home.  So yeah, I’ve driven a lot.  But as I have grown older and my eyes are not as they once were, requiring glasses, my sense of direction (not that I ever had one) has gotten worse, not sure how that’s actually possible…  but it has…  so a GPS system, it turns out, is less an “option” and more a necessity.

But last night when we arrived, I was still thinking of the me that I was thirty years ago.  The me that took on New York City traffic without a second thought, the me that spent hours a day navigating Southern California’s freeway system, the me that drove all over the place, every day without hesitation, yeah, that me.

Turns out?

She’s gone.

Image representing Google Maps as depicted in ...

A Conversation in the Car

Because Em has just brought in the timer and set it for ten minutes, this will be quick!  Kind of like speed posting.  (Post on Markram interview will have to wait yet another day!)

I posted the following conversation on Emma’s Hope Book page on Facebook last night.

Driving home from the swimming pool. Nic and Em in the back seat. 

Nic: Em stop it.

Em: Cha, cha, cha

Nic: Mom! Make her stop. She’s doing that just because she knows how much it annoys me!

Em: Cha, Cha, Cha

Me: Turning around to monitor the situation  Okay, Em. What are you doing?

Nic: She’s trying to bug me!

Em: Grinning  Cha, cha, chocolate milk!

Me: Oh my god, that’s hilarious. Richard! Putting my hand on Richard’s shoulder.  Did you hear that?

Richard: What? What happened?  Looks in rearview mirror.

Em: Laughing  Cha, cha, cha, chocolate milk

Nic: She just changed it so you guys wouldn’t make her stop!

Em: Leaning toward Nic, gets right in his face  Cha, cha, cha, chocolate milk!

Nic & Em begin laughing hysterically.

Not only was the above conversation noteworthy because this type of interaction between Nic and Emma is not typical, but it was also worth mentioning because of Em’s increased interest in word play.  I see this in her desire to play Duck, Duck, Goose where she comes up with different word associations.  Sometimes, as in the case of “China boat, china boat, ocean!”  I’m not clear what the word association is, but I no longer doubt that there is one.

Emma eating her cake

Cloud cover over the Rockies

Walter and friends

Paul

It’s A Man’s World – The Cabin, Outhouses, Peeing & Bladders

I have the bladder of a camel.  Only now that I think of it, this may be factually incorrect as I’m not certain camels really do have exceptionally large bladders, for all I know, they just pee where ever they are because they can, and that I’m confusing this with the fact that they go for long periods of time without drinking water, but that first sentence has a certain power to it and it gets the point across.  Okay, moving right along here…

You may wonder why I bring this up.  You may be thinking, this is not the sort of post I am interested in reading.  You may be thinking I don’t care about camels or bladders in general and particularly not hers and anyway what has this got to do with autism?  Or you may be thinking – Oh DO get on with it.. or you may be heading over to google because now you want to know all about camels, or you may be..  okay, okay.

Allow me to explain.  Both my children have, it appears, inherited my ability to not pee for inordinately long periods of time.  I can also go for long periods of time not drinking any liquids, coupled with my excruciatingly slow metabolism I could basically out live anyone should I ever be stranded somewhere, like a broken elevator, where there was access to neither.  (Oh I know.  Welcome to my mind.)  This ability to go long periods without having to pee comes in handy: long car trips, aversions to using public restrooms, and sleepovers at our cabin.

I’ve mentioned our cabin before.  It’s a rustic, one room log cabin, which my family built (literally) in the late 70’s.  It has no electricity or running water.  There is a sink with cold water piped in from the creek that runs nearby, but I think we turned that off and since no one lives in the cabin, it’s not something we bother with.  My father dug and built an open sided outhouse just up the mountain.  The outhouse is far enough away that you definitely do not want to try to go there in the middle of the night or at any time of the day or night during the winter because of the snow drifts, unless you’re wearing neck high gators.  Trust me, post-holing up the mountain at 3AM, while trying to locate the outhouse because you forgot to bring a flashlight (and toilet paper) in below zero temperatures to pee is not a good idea.  I speak from experience.

Emma LOVES the cabin, as do I and Richard, who couldn’t quite figure out the allure the cabin held, was converted last summer when he had his first sleepover there.  Nic…  not so much.  Every time we come out here to stay with my mother, it’s a given that we will have a sleepover at the cabin.  Emma anticipates this event days in advance.  “Sleep, wake-up, sleep, wake-up, sleep, wake-up, sleep, wake-up, have sleep over at the cabin!” she will say upon our arrival and before we’ve even had a chance to unpack.  “Yes!” one of us will confirm, while Nic looks at us with a look of Please-tell-me-I-do-not-have-to-go-too on his face.  (That kid has way too much attitude for a twelve-year old.)

I think I look forward to sleepovers in the cabin as much as Emma does.  Last night was our designated sleepover night.  After unpacking our things, sweeping out mice droppings, cobwebs, dead wasps, opening the windows and airing the place out I realized I hadn’t peed before leaving my mother’s house.  “Hey Em, do you have to pee?” I asked, figuring I’d take her with me, since I was going to make the trek to the outhouse anyway.  “No!” Emma said emphatically.  So off I went while contemplating the positioning of the outhouse, its considerable distance from the cabin, how inconveniently located it was, how Richard AND Nic have never even used the outhouse, how only a man would build an outhouse this far away and while it was certainly positioned in such a way that one could appreciate the view as one sat in it, how many people were seriously going to do that when it was freezing cold or in the middle of the night?  No, I concluded, this was the sort of outhouse only a man would build and then never use.  And then I bushwhacked my way back to my family.

Which brings me back to my bladder and the ability I, and both my children, have  in not needing to relieve ourselves for hours on end.  It’s a gift, pure and simple.  One that I was particularly grateful for last night, knowing that not only would Emma not require me to accompany her up the mountain at some ungodly hour, but that I would not need to go either.

It’s important to contemplate these things.

Bucks – there were three of them, but I was only able to capture two, the third is just to the right.

View of our ranch

Emma heading up to the cabin

View of the Rockies from the cabin’s porch

Em heading home

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ICare4Autism – An Opportunity to Make a Difference

I attended the ICare4Autism conference in Jerusalem last week.  I wrote about this not long ago in the post Synchronicity, Jerusalem and Autism. As a quick recap Jerusalem was the place Richard and I had intended to go for our honeymoon.  Not six weeks before we were due to leave, the intifada broke out, forcing us to abandon our plans. That was thirteen years ago.  This past May I received a letter from the “State of Israel” inviting me to be their guest.

In addition Dr. Henry and Dr. Kamila Markram were presenting at the conference.  They are the neuroscientist team who came up with The Intense World Theory For Autism, the only theory to date that has validated my observations of my ten-year old daughter, Emma.  When I read they were going to be in Jerusalem this past winter I joked with Richard about how amazing it would be to meet them AND go to Jerusalem.  At the time we just laughed at the insanity of the idea and went on with our lives.  Then the invitation arrived.  I knew it meant I would need to write about the conference.  Writing about the conference was why I’d been invited.

Except I do not consider myself a “journalist.”  I am not an impartial, unbiased observer, prepared to provide an even-handed summation of my observations.  I am highly opinionated and exceptionally biased in my ever evolving perspective on autism.  I regard the motivations of most so-called autism advocacy organizations with suspicion and even outrage.  I am frequently hostile in my view of the self-appointed Autism experts, medical charlatans and other “professionals” who make a living off desperate parents, like myself.  If I had all the money I’ve spent on the various “cures,” biomedical interventions and dubious therapies we have employed over these past eight years, I wouldn’t have cared about an invitation providing me with airfare and hotel accommodations.

In less than a year, my perspective has radically changed.  Had I attended this conference last August my focus would have been on meeting as many researchers and doctors as time would allow.  I would have spent each break roaming through the many tables set up outside the conference rooms selling all manner of goods purported to help a child with Autism (and yes, that is how I would have described my daughter – a child with Autism) hoping for something that would cure my daughter with the same longing and desperation that had dragged me from one “specialist” to the next for all those years, not so very long ago.

But that was before.

That was before we began implementing Emma’s literacy program.  That was before Emma showed signs that something we tried could and would work.  That was before I read Henry and Kamila Markram’s Intense World Theory.  That was before I began reading the blogs of Autistic adults and as a result began communicating with a number of them (see yesterday’s post).   Suddenly, and it really was relatively quick,  I began to view my daughter through the eyes of someone seeking to understand rather than fix.  I began to see her actions, whether it was stimming or echolalia or self-injurious behavior – as her attempts to communicate rather than aberrant behaviors that needed to be quelled and eliminated.

Was ICare4Autism going to be different than any of the other organizations out there promoting interventions, therapies and the ever illusive and questionable promise of a cure?  The information I compiled prior to the conference did not look promising.  But, I kept reassuring myself, the Markrams would be there and if nothing else, I had set up an interview to speak with them.  Beyond that there seemed little to distinguish them from any of the other organizations using “autism” in their name.  Still I went to the opening dinner with an upbeat, hopeful attitude, eager for a better idea of the organizations intentions.  When the opening video played I consoled myself that at least the distraught parents filmed were not openly weeping and talking about their distress in front of their children.  By the way, just in case anyone misunderstands me, less than two years ago I could have been one of those sobbing parents and I would have wept in front of my daughter and spoken of her with the mistaken assumption that she couldn’t understand.  It would not have occurred to me that hearing her mother speak of a desire to cure her might have made her feel horrible, sad and depressed, things she wouldn’t be able to communicate to me, which would only further her sadness and feelings of isolation.  I get it.  Really I do.

The conference began with a Welcoming Ceremony with a speech from the founder and CEO, Joshua Weinstein, who called for communication and collaboration.  He spoke of plans to move their headquarters to Jerusalem, a city with a long history of misunderstanding and strife, making his call for communication and collaboration all the more significant. The Mayor of Jerusalem, Nir Barkat spoke of his pride in hosting the ICare4Autism conference and eagerness in it becoming a world center for Autism research.  Dr. Shekhar Saxena, director of Mental Health and Substance Abuse at the World Health Organization spoke briefly as did a number of others.  And then the Autistic Boys Choir got on the stage.  Seven teenagers began to sing, their voices rang loud and clear, their pitch was perfect, their enthusiasm and joy infectious and the audience began to weep.  I was right there with them, madly rummaging around for my kleenex, trying not to let out too much noise other than the odd sniffle.   I wept from sheer gratitude, because these teenage boys/men were like my daughter.  One young man in particular who clearly reveled in performing reminded me of Emma.  So yes, I wept from relief, from joy, from seeing Autism shown not as a tragedy, but as difference and of hope for what can only be described as the possibilities, not just for our children, but for us as a society when we hand the microphone over to those we say we care about and want to help – Autistics.

Over the course of the next day and a half I tried to meet with Joshua Weinstein, but for a variety of reasons, wasn’t able to.  Then finally in the afternoon of the last day of the conference, I saw Joshua Weinstein and mustered up the courage to approach him.  I spoke to him about why the Autism = Tragedy model needed to be discarded, that while it may get people to write checks it was an unbalanced view, completely disregarding the feelings of Autistics (our children) who are being sent the message that they make their parents and families desperately unhappy, the very people who are supposedly trying to help them.  Josh was not only kind and receptive, but later thanked me for coming over to him.   He assured me that he really was interested in communicating with Autistics and would take me up on my offer to introduce him to a number of people I know, both verbal and nonverbal, and am in contact with.

Josh invited me to be on the advisory board, which I’ve agreed to.  He is working with a number of people at the UN, as well as WHO (World Health Organization) and asked that I attend the UN meeting.  He has, since we spoke at the conference called and we are in email contact demonstrating his sincere desire to follow through with his promises and words.  Am I surprised?  Yes.  I am.  But more than that I am hopeful.  Hopeful that ICare4Autism will actually include the very people they say they care about by putting them on their advisory board and by listening to them as they develop and attempt to fulfill their mission in becoming a world-wide Autism organization that does more than pay lip service to those who are Autistic.

“Caring about autism – what we know of it and how we put it in our narratives – is something from which all manner of people can and must benefit.”  Representing Autism Culture, Narrative, Fascination by Stuart Murray

Autistic Boys Choir

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The Aftermath

Richard and I returned from Jerusalem and the icare4autism conference Friday evening.  It was so good to see Emma again after being away for an entire week. The three of us spent the weekend in NYC and then flew to Colorado where we were reunited with Nic (whom I haven’t seen in a month) looked after by my doting and wonderful mother.  I have at least three hours of recordings from the conference to transcribe.  I must write about the conference in greater detail, I have a great deal of work to do for my business, the one that actually brings in money, and I want and need to spend time with my family.  I’m tired.  That’s what I keep thinking.  But there’s more to it than that and I haven’t figured out yet what that exactly means.  There’s panic.  How am I going to get everything done?  But there’s something else, something I haven’t put my finger on yet.

It’s 4 AM (I’ve been up since 3) but you could tell me it was 1 in the afternoon and I’m so turned around I’d just nod my head.  So rather than say any more I’ll end with this – a little scene from last night.

Em:  Play duck, duck, goose?

Me:  Yeah, okay.

Em:  With you (points to me) and me (points to herself) and Nicky and Daddy and Granma?

My mother: What’s duck, duck, goose?

Nic:  You’ll see.

Everyone sits at the dining room table as Emma stands waiting. 

Em:  (Going around the table, while placing her hand on each person’s head)  Snow.  Snow.  Snow.  Snow.

My mother:  Should I do something?

Nic:  No Granma.  You have to wait.  She’ll say something different.

Em:  (Grinning, pats Granma on the head)  Raining!

Richard:  Oh no!  Emmy you have to pick someone else, Granma can’t run.

My mother:  (Looking horrified) I’m suppose to run?

Me:  (Laughing)  Yes, you’re suppose to run after her.

Em: (With mischievous grin)  Granma run?

Richard:  No, Emmy pick someone else, Granma can’t run.

Em: (Continues to go around the table) Snow. Snow.  (Puts hand on Richard’s head and hesitates.  Then shouts)  Raining!

This game continued for several rounds with Emma occasionally directing when things weren’t going as she felt they should.

Em:  Okay.  Last time for duck, duck, goose.  

When she’d finished going around the table, picked someone and after lots of screaming and laughing my mother said, “That was a great game!”

Em:  Play again?  (Looks around the table grinning)  Okay, okay, later.  Play duck, duck, goose later.  Tomorrow.

It’s good to be home.

Em on the High Line Sunday

Letters, Photos, Autism And Jerusalem

I have been meaning to quote from a letter I received last week from Peyton Goddard and another from her mother, Dianne Goddard.  Peyton and Dianne Goddard wrote a book, I am intelligent, which I posted a couple of weeks ago, since then I am honored to be in communication with both of them.  Click ‘here‘ to read that post again.  I asked them for permission to quote from their letters here.  They have agreed.

This is part of an email Peyton wrote me, responding to the post I wrote about her book and labels.

“Pleasured I am pointed to hearing your understanding that lasted, large, limiting, linear labels are hulking jungles greeted by limitations. Keeping one limited is to measure there wastes of their great gifts.  One’s tears taste lime. Understares, terror builds. One washes their tears by return try freed to their Creator, as rest there they hunger. Polling my limits I kettled boiling red, as heard I’m trapped. There I wasted my lived times in pity. Limiting labels murder poignancy of sweet journey. I watered my liking to keep open living by questing for others better lives poignantly sweetened by encouraging swiping labels away. Wastes caging pertinent persons must stop. A trepid heart needs verses assuring “I’m deared by this very looking world. I can be me. My heart need caw no longer.” There joy is heard. These awesome pertinent persons can be freed to limitless. It greeted I hurrah…”

And this is part of an email from Peyton’s mother, Dianne –  

I spent much of Peyton’s first twenty years deliberating and comparing the severity of differences in persons labeled with disabilities that I met or read about. In the early years, this private, internal discussion between me, myself and I, offered some relief to my worries over Peyton’s delays and differences, as her challenges did not seem insurmountable if I therapied her enough. And professionals agreed. In the days before Internet could bring me many children to compare her levels of functionings and measured progress to, I found I could usually comfort my fearful self with observations that the few children we met with disabilities seemed to have much greater challenges than hers. A case in point was (removed the name for privacy’s sake) who was several years younger than Peyton. When talkative W. was three and not walking, he was tested. Duchene’s muscular dystrophy was diagnosed.  Debilitating muscles until death in his early twenties was the best case scenario. Pity him I did. And compare I did. While Peyton would be continuing to improve, he would be suffering a slow and sure death.

Not so. Peyton lost functioning and filled with a suffocating sadness she could not begin to shake for well over a decade. Yet W. lived happy. At his celebration of life five years ago I reflected on my foolish attempts to comfort myself by comparing the severity of challenges, and how thankful I am for new understandings of acceptance and valuing Peyton for ALL she is. Above all, I am comforted knowing she can really feel my love finally.”

The Icare4Autism Conference begins tomorrow.  More on that later.  To end, a few more photographs from our adventures in Jerusalem.

The Dome of the Rock  

Fragment of an Ancient Column in the Courtyard of The Dome of the Rock

Old Tombs in Valley of Jehoshaphat

Outside Zion’s Gate in the Old City

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Jerusalem in Photographs

Richard’s “I falafel”  joke struck back.  He spent the day sick in bed while I spent the day seeing all of this.

A day in photos…

Entrance to Church of All Nations

Mount of Olives (A massive cemetary)  As I climbed the narrow street along the cemetary, a man with a donkey appeared.

Tree of Thorns outside the Dominus Flevit Chapel

Dominus Flevit Chapel (“The Lord Wept”)  The dome designed in the shape of a tear drop as Christ was said to have sat nearby and wept over the fate of Jerusalem.  David, the nice gentleman who allowed me to come into the Chapel, despite the fact they were closed to tourists said, “You may sit here out of the hot sun while I feed my dogs.  If you like you may say a prayer.  Just don’t cry.”  To which I said, “Thank you so much.  I’ll sit right here,” I pointed to a little wooden chair.  “But I’ll save my tears for that scary looking tree you pointed out earlier.”  He laughed and left me to care for his dogs.

Archaeological Site in Front of St. Anne’s Church  Just to the right are stairs descending to the Pool of Bethesda where Christ is said to have carried a paralyzed man and cured him.

Kitty – A great many cats running wild in Jerusalem.  Most are pretty mangy looking, but this one was particularly cute.

A Side Street off Via Dolorosa – Notice the red neon tattoo sign.  A perfect example of the meeting of ancient and modern

YMCA (Pronounced “imca”) Built in 1926- 1933 by the same man who created the Empire State Building, Arthur Loomis Harmon, Jerusalem’s YMCA is a wonderful example of embracing differences, working together to create something larger than any one group, religion or people.  The auditorium beneath the dome has lighting fixtures each illuminating a different image – the star of David, the cross and a crescent.

Jerusalem and Beyond

Day 1

The Citadel in the Old City of Jerusalem looking toward the Tower of David.  We kept saying to each other, “I wonder where all the people are.”  It turns out it was Shabbat and Ramadan, though that didn’t entirely answer our question.

View of The Dome of the Rock

During our explorations, we found ourselves in the Old City Market along with hundreds of Muslims, Christians, Jews and tourists speaking German, French, Italian, Spanish, Russian, English and those were only the languages I could identify.  It turns out we were on the Via Dolorosa, the path Christ is said to have taken to his crucifixion.

Mountains of Spice,

Fresh Fruits,

Baklava,

and yes, even bras, but look how colorful they are and so beautifully arranged.

We went to the Church Of the Holy Sepulchre & The Chapel of St. Helena where we descended this…

leading to a massive cistern.  A tour guide was telling her group that the water was potable, though I remained dubious, having had too many run-ins with Giardia to last me a lifetime.

On we ventured to so many sites I’d have to pull out the guide-book to recite them all.  We sat at the entrance or was it the exit of Damascus Gate and reviewed where we were and what we still wanted to see.  We plunged back down into the depths of the market place, emerging out into the sunlight to visit the wailing wall, where I placed my hands against the giant stone slabs amidst tiny notes stuffed into its crevices, women on either side of me rocked, prayed, muttered, moaned and wept.  It was impossible not to feel the power of humility in this ancient, beautiful and complex place.

We ended the day by sitting at an outdoor café and eating falafel.

I turned to Richard as we waited for our food to arrive and said, “I’m hungry.  Do you realize we haven’t eaten anything today?”

To which he replied, “I falafel” (feel awful) before slapping his knee and doubling over in laughter at his own cleverness.

Oy.

Day 2

We spent the morning at the Holocaust Museum.  Words do not describe..  it is a powerful and painful reminder of what humans are capable of.

We drove to Masada where we roamed a fortress built on a barren mountaintop in a part of the world that gets barely one inch of rainfall throughout an entire year, during the 1st, possibly 2nd Century and further added to by Herod intent on making it into his “summer palace” complete with cisterns, hot baths, beautifully decorated walls where one can still see the frescoes, mosaic floors all  overlooking this expanse of arid land with the Dead Sea and Jordan just beyond.

and this wall…

On the way back to Jerusalem we drove to the Dead Sea where we swam or rather floated because of the heaviness of the salt water.

Salt encrusted rocks on the shore of the Dead Sea

Meanwhile, Jackie has sent me a daily update of Emma’s adventures while we are away.   Emma saying – “Cheese”

Synchronicity, Jerusalem and Autism

I am leaving for Jerusalem tomorrow.  I will be covering the Icare4Autism Conference and am meeting Kamila and Henry Markram, the neuroscientists and creators of The Intense World Theory for Autism.  I intend to continue to post as usual, Monday through Friday, but because of the time change and depending on my level of jet lag, my posting times may be a bit wonky.

I am very nervous about this trip.  Not because of the traveling, but because we will be away from Emma for a full week, which marks the longest we’ve spent away from her since she was born ten and a half years ago.  I have gone over our itinerary with her.  I have spoken to her about how many days before we return, we have studied the calendar together.  We have discussed what she will do while we are gone.  But still, I am nervous.  Whooooo.  Breathe.

Today I pack while trying to remember to breathe.  Emma will be fine.  She will be okay.  Breathe.  Try not to panic.

I’ve never been to Jerusalem and am excited that Richard will be accompanying me.  This was where we had intended to go for our honeymoon, (with our then nine month old son, Nic in tow, making it less a honeymoon and more an insanely, ambitious trip with a baby)  had made our reservations to spend Christmas Day and the following week at the King David Hotel, then had planned to spend New Years Eve in Giza at a hotel overlooking the pyramids, a week in Cairo, then a side jaunt to Lebanon and Petra before returning to Jerusalem.  In all we had planned to be gone for three weeks.  Two months before our wedding the intifada broke out and we were advised, because we were traveling with a baby, not to go.  We still have all the guide books with their dog-eared pages marking the places we’d hoped to see.

This time we will have just three days of sight-seeing before the conference begins.  But, as with so many things that have to do with Emma and Autism, the synchronicity of the following events is not completely lost on me.  Just over eight months ago our lives and by extension Emma’s radically changed because of the links I was finding to Autistic blogs.  I’ve shared those posts and blogs on here.  During that same period I came across the Markram’s Intense World Theory and Richard and I, through our research, learned they were going to be in Jerusalem in August presenting their work at a conference.  At the time I didn’t know it was a conference focused on Autism.  I remember Richard and I joked with each other, wouldn’t it be great to figure out a way to go to Jerusalem and meet them?  It was a joke, literally, neither of us for a moment seriously considered the idea.  And life continued.

This past spring, I was invited to be on a panel and give a talk at the AutCom Conference in Baltimore this coming October.  I accepted the invitation.  And again life continued.  Not long after that invitation, I received a letter from the “State of Israel” asking if I would like to be their guest to cover the ICare4Autism Conference in Jerusalem this August.  When I received that letter I read it to Richard and we just looked at one another.  I will never forget the expression on Richard’s face.  It was a slow motion grin that didn’t end with me saying something like, “How weird is this?”

Sometimes life throws stuff at you and you know, you just know you have to figure out a way to grab the opportunity.  So we did.  And now we’re going.  How exciting is that?

English: Old City Walls of Jerusalem - on Moun...

English: Old City Walls of Jerusalem – on Mount Zion – View towards the King David Hotel (Photo credit: Wikipedia)