The Complexity of Life and Change

*Emma gave me her permission to write about this.

Yesterday Em was having a tough time.  She has been talking about an indoor playground that closed some six years ago, expressing her upset that it’s now a store and asking that we build a new indoor playground exactly like it.  We have discussed the idea that places go out of business and that we can’t bring them back, we’ve talked about what is required to build an indoor playground, but that it will not be exactly like the one that closed.  We’ve discussed the concept of same and different.  We’ve gone over the preliminary steps needed to be taken in creating any sort of space.  Joe even thought she might like to build a model playground, complete with running water and electricity, but none of this has helped.  She remains very upset.  So much so that I began to feel certain her upset was not actually about this specific playground, but that this playground has come to symbolize loss.

“I want playground.  I want to build it.   Will take out the store and build a different playground has slides and a bouncy castle.”

I explained again that we couldn’t do that.  Em then repeated how she wanted to build a playground and then said, “Bertie kitty can’t eat pancakes.  Bertie kitty, the animal vet doctor, says no.  Might get sick.  Bertie kitty died.”

I nodded my head and said, “Bertie was old, Em.  He didn’t die from eating pancakes.  He died because he was very old.”

“I want to take it out!” Em pulled at the palate expander in her mouth and began to cry.

“I know you do, Em.  But we can’t take it out yet.  The orthodontist will take it out eventually.”

“Soon.  I want to take it out now.  I want to build it.  I want to build new playground.”

It’s easy for me to get caught up in the literalness of Emma’s words.  To get swept up in each upset individually, as it shows itself, veering from the closing of a playground, to the death of my cat, to the desire to have her palate expander removed.  If I take each of these concerns separately and at face value, I can quickly become lost in each one.  This is something I continually struggle with, not just with my daughter, but in life.  I take things pretty literally and often try to compartmentalize each thing so as not to get overwhelmed.  So in instances when Emma seems to be racing from one upsetting thought to the next, it isn’t my first thought to look for the common thread.  But I am fairly certain I’m correct about my interpretation of what’s going on here.  I think Emma is working through a number of difficult concepts that in her mind are all related.  The playground closing and being replaced by a store that holds no interest for her, the death of my elderly cat Bertie, whom she loved, and the palate expander that she dislikes and wishes would be removed.  I could be wrong, of course, but it seems to me they are all connected.  They all fall under the heading of permanence and impermanence, or death.

As Emma learns to communicate better through both typing and verbally, we become better at listening and understanding her, her anxieties are becoming more obvious to us.  As her communication skills increase, so does her obsessive compulsiveness, or so it seems to us.  It’s entirely possible that Em has always had this degree of anxiety, obsessiveness, coupled with compulsivity, but we are only now becoming aware of just how difficult it is and how often it overwhelms her.  Leaping from one upsetting scenario to the next is something I do too, particularly when I am tired.  With Emma it’s all about things that are impossible to have, things that are gone and won’t come back or, as is the case with the palate expander, about change, literally physical change as she looses the last of her baby teeth and her permanent teeth appear.

As we continue to support Emma with her typing, we have noticed she is becoming more verbal.  As she becomes more verbal she is expressing her anxieties, her concerns, as well as her desire to be heard.  The more we listen, the more she has to say.  Yesterday as we worked on her typing, I asked, “Em tell me two things you like doing and one thing that’s hard.”

Em typed, with my hand barely touching her forearm, “I like to bounce on the trampoline.  I like to bounce on the bouncy castle.  It is hard for me to work with mommy.  You could help them work with mommy.”

“Thank you for telling me that, Em.  Who should help me so it’s easier for you to work with me?”

“Pascal.”

Emma and Pascal take each other’s photographs  - April, 2013

*Pascal

Diversity Abounds

It's Spring!

Spring at the New York Botanical Gardens!

Epidendrum

Orange Epidendrum ~ The Orchid Show at the New York Botanical Gardens

Phalaenopsis

Pink Phaleanopsis

Dendrobium

I can’t remember what the name of these orchids are.  Dendrobium, perhaps?  Richard gave me one years ago.  

I love orchids.  When I went to Thailand almost two decades ago, I was surprised to see orchids growing like weeds on the sides of the roads.  Something that is seen as exotic here in New York City was tossed into the backs of pick-up trucks in Bangkok.  Something that is thought difficult to grow, given the right climate flourishes in other parts of the world.

As I looked for an orchid to take home with me, I thought of diversity.  I thought about how some orchids require just the right light, just the right amount of water and soaking and humidity and how others require much less, but once its needs are met, all can and do flourish; just like us!

The Practice of Life

Yesterday while working with Em (we are learning about American Indians) I had a moment of panic.  I thought, I have no idea what I’m doing here.  I don’t know how to teach this material.  I don’t know that she understands any of this.  

The more panicked I became, the more impatient I felt.  The more impatient I felt the more in touch with my anger I was.  When she randomly pointed to the wrong answer I said in a stern voice, “No!”  Emma doesn’t respond well to “No!”  I know this. But in that moment yesterday, I needed to take a break.  In that moment, neither of us were going to be well served by pushing ahead with the material.  It didn’t matter that I’d printed out more than a dozen photographs of various American Indians and the living structures different tribes used.  It didn’t matter that I’d prepared material to discuss how some planted and became farmers, while others fished and still others hunted buffalo.  None of it mattered because I was having feelings about how she should be able to learn it in the way I was teaching it, despite the fact that the way I was presenting the material was not the way I’ve been taught.

I was not, in that moment, able to practice patience and good teaching.  In addition to this, my thinking was my own worst enemy.  Whenever I begin to think in terms of fearful, projected thinking, and then ask questions such as, “what if she doesn’t understand this?”  or “why didn’t she know the answer to that question?”  I begin to feel impatient and then angry.  In that moment I was not able to see that I was asking the wrong questions.  In that moment I was not presuming competence in her ability to learn.  I know she can learn the material.  I have seen her learn all kinds of material.  This is an example of expectations, coupled with impatience and not teaching the material in the best possible way.

It is during moments like this that I need to take a break.  I know this.  It seems that this would be a fairly easy thing to recognize and then implement by saying something like.  ”Oh, hey.  I need to take a break.  Let’s come back to this later.”  Or some other equally non-judgmental comment, but this isn’t easy for me nor does it come naturally.  I slide quickly into either self recrimination or fear and annoyance that she isn’t attending to the material (and me) in the way I would like.  *Breathe*  It’s okay.  You’re okay.  Just take a deep breath.  It’s all fine.  In moments such as this, it is vitally important that I take good care of myself so that I don’t do harm to those around me.  I’ve learned this.  I know this.  This is fact.

So I am writing all of this out here, not as a public flogging or because I’m seeking absolution, but as a gentle reminder to myself that the way I treat myself is the way I treat others.  It’s all practice.  My specific practice includes patience, remaining calm in the face of fear and annoyance.  Recognizing, without judgement, that I do not always behave the way I would ideally like.  Admitting and accepting that I am flawed.  And doing everything in my power to be the very best parent (and person) I can be.  I can’t rewind the tape of yesterday’s session, but I can acknowledge what happened and that I do have the tools to present the material differently this afternoon.

This lesson of patience and calm when my emotions are running in the red is one I have not yet mastered, but am working toward one day at a time.

contemplation

Some Thoughts on Accommodation

A year ago I did a crash landing into the world of bloggers, all of whom were Autistic.  I had been looking for them for years, but suddenly, or so it seemed to me, I found not one, not two, but dozens and dozens of blogs written by Autistic men and women in their 20′s, 30′s, 40′s and 50′s.  It was surreal because these people were writing about their lives, giving glimpses into what it is like to grow up and live in a world and society that does not “see” you, yet talks about you and perpetuates misinformation about you with little interest in verifying whether their interpretation is in fact correct.

Pretty quickly after my crash landing I found this ‘post‘ from the blog Radical Neurodivergence Speaking about attending an Autism conference where the keynote speaker said, ”When one family member has autism, the whole family has autism”.  The blogger writes, “My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It’s a lot easier to protect the martyr mentality when you insist it’s about you, but that’s just not how it is. As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.

Now remember, I was at the very beginning of finding actual people who were talking about their own neurology as opposed to ‘experts’ talking about their interpretation or ideas about a neurology they did not have.  I had to reread that paragraph before I could go on.  ”As long as it’s considered to be our parents’ thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that’s not right. It isn’t even wrong. It’s so backwards there is not yet an adjective for it.

I had to get up and walk around because this concept, this simple, and now it was dawning on me, pretty obvious idea was not something I’d really considered before.  I had to sit down and think about this.  ”As long as it’s considered to be our parents’ thing, though, the system will continue to be broken.”  And then I realized something.  I didn’t like what I realized, but I couldn’t tamp it down.  It kept springing back up into the forefront of my mind.  I realized by making autism and my daughter’s neurology about me, I would continue to feel sad and victimized by “it”.  ”It” was this terrible thing that had happened to us. “It” being the operative word.  ”It” wasn’t my daughter.  ”It” was what we fought against.  And by then adding a judgment to my daughter’s neurology (it’s bad) I was limiting it even more and adding a layer of horror to it.  Without meaning to I was making things much, much worse for all of us.  Without knowing it, I was doing the opposite of accommodating “it” I was co-opting it and making it all about ME.

Now before people start saying things like – wait a second, autism DOES affect the whole family, or, but the siblings DO feel x,y and z – I need to state the obvious – of course an autism diagnosis affects the whole family, but affecting the family is different from saying, ”When one family member has autism, the whole family has autism.”  That simply is not true.  The whole family does not “have” autism.  This is not FACT.  Insisting that it is fact when it is not, does not serve any of us, but mostly it is a massive disservice to my daughter and all who are Autistic.

When my father had his horseback riding accident I was nine years old.  It completely affected my outlook on life.  At the age of nine I considered death, hospitals, doctors, what it means to be physically disabled, in a way that my same age peers were probably not contemplating.  Yet I was not suddenly “disabled” because of his accident.  None would have suggested that.  I might have been helped had I seen a therapist to work through some of my fears and later phobias that resulted from his accident, but that is very different from co-opting his experience.  When my father was in a wheel chair, the entire family did not suddenly lose the use of their legs.  My father needed accommodation, ramps needed to be built inside our house where there were stairs, he needed assistance getting into and out of the swimming pool, but the rest of us continued to walk around, ride our bikes, play with our friends and live our lives.  Did my father’s accident affect me, well of course it did, but never would anyone have suggested that because of my father’s disability the entire family was therefore disabled.

We keep having to fight for ownership of our own experiences, and that’s not right.”

Ownership.

We all need and want to be heard.  Parents want their experiences to be heard and acknowledged.  Siblings want their experiences heard and acknowledged.  But that should not be at the cost of our Autistic children.  ALL people deserve to have the accommodations they need.  Just as my father required ramps built in our house, my daughter needs support to communicate without the added pressure or guilt that she is causing the rest of us hardship.  We need to reframe the conversation.

More terrific posts from Radical Neurodivergence Speaking:

I shouldn’t have to beg

I’m on your kid’s side too

Autism and child abuse: Both for April. Oh IRONY.

More Toxic Lessons Learned

Em

Friendship – Another Myth Regarding Autism

My friend Ibby is here staying with us for a few days.  It’s a working visit, but that doesn’t take away from the joy we are all experiencing because she is here.  Who says work cannot also be a blast?

Emma and Ibby 

Em and Ib

I’ve spoken of Ibby many times on this blog (here, here, here and here to link a few) because Ib has, more than any single human being, done more to change my views regarding autism and my daughter than any other person.  I know that may sound hyperbolic, but it’s actually not.  It’s true.  Or as Ib would say, “Fact.”  And it is.  Fact.  Another fact is the gratitude I feel toward her.  Just tremendous gratitude for opening my eyes, not just to one thing, but to multiple things.  As an example, here is just one little thing that happened as a direct result of Ib.

Ib gently urged me to watch the documentary Wretches and Jabberers.  When I did not immediately watch it, she reminded me and again encouraged me to rent it.  I think she had to remind me three times, before I actually sat down and watched it.  And because I watched W& J, when I presented at the Autcom Conference last fall I went to hear Harvey, Tracy, Pascal and Larry’s presentation on supported typing and because I went to that presentation I had the idea that maybe, just maybe it might be the thing that could help my daughter communicate more reliably and because I had that idea I approached Pascal and asked if he was ever in New York City and because I asked him that, Pascal began helping us learn to support Em and because we started helping support Em I began to understand what presuming competence really meant and on it goes like the “If You Give a Mouse a Cookie” books, one thing leads to another and another and suddenly you look back and see that this person, this one person has influenced another (me) and the ripple effect is so far-reaching and beyond anything anyone could have imagined.

The Wretches and Jabberers example was just one example of one tiny thing Ib had a hand in.  I could name at least a dozen or more much larger examples, like the conversation (documented ‘here‘) we had about language and my daughter’s specifically and how sometimes she says things that seem completely unrelated to anything that’s going on, but how it is related, even if it’s not related in any way I can identify.  Sometimes it’s a leap-frog kind of association, often there’s an emotional component too, so when she suddenly blurts out, “No not going to see motorcycle bubbles” I now know Em is thinking about visiting her Granma in Colorado or is anticipating an electrical storm or watching the 4th of July fireworks display from the ranch. There’s excitement and maybe some anxiety and even fear and eager anticipation.   I know this now because Ib has helped me understand and has taught me how to “lean into” her words and not try to do a word for word translation.

Ib and I have been working on a book together about Autism, Inclusion and Friendship.  As a result I am thinking a great deal about friendships and relationships in general what they mean and how they develop and how the very definition of friendship is about inclusion and support and accommodation and giving each other slack and cheering each other on and appreciation and gratitude and being there for the other person.  It’s a mutual give and take and it’s reciprocal.  Relationships are basically what make this world and life worth living.  Ironically friendship was the thing I wrote about on this blog’s first entry.  It was what I wanted my daughter to experience, but feared she might not ever have, because I believed what I was being told about autism and that myth surrounding autism and being alone.

Over three years ago, when I started this blog, I wrote, “…hope that we may help our daughter Emma, now 8 years old, lead a life that includes deep friendships and the powerful bonds that result from being able to communicate with one another.  A life that is enriched by our interactions..  this is what I dream of for her..”   Who knew that not only would my definition of what constitutes “communication” completely change, but so would my mistaken ideas about my daughter’s ability to have friendships.  As an added plus Ibby is not only in my life, but in my entire family’s!

So yeah, Ib is really important to me.  I love her dearly; we do all the things friends do when they get together: confide in each other, laugh, hang out without having to talk, hang out and talk and talk and talk, cry, and when we aren’t physically together we stay in touch.  But as with all really close friends, Ib is in my mind and heart regardless of where she is.  I think about her and when we haven’t spoken for a few days we reach out to each other and connect, sometimes briefly if we’re both busy, but she’s always “here” in my heart.

As Ib has said, “Friendship is Fact.”

Vanilla cake with vanilla icing – made by Emma, Nic and me 

Ib's Cake

 

“Will She Be Okay?”

“Will she be okay?”  This was the question that went unanswered for the first nine years of my daughter’s life.  

“Will she be okay?” I asked every autism specialist, neurologist, pediatrician and anyone else who seemed vaguely knowledgable.  This question actually had almost nothing to do with the child I saw before me and everything to do with how I felt.  I so wanted reassurance.  I so wanted and needed someone to tell me she was going to be okay, whatever okay meant.  Whatever world “okay” occupied, I wanted to know, really know that my child was going to be embraced and fully in the “okay” of it all.  

“Will she be okay?”

Like the children’s story about the baby bird who’s fallen from its nest and asks all manner of creatures it meets “Are you my mother?” I desperately wanted someone to put their arm around me and say those seemingly magical and reassuring words – “Yes.  I promise.  She’s going to be just fine.”  But none did. So on I went, searching, trying every therapy, remedy, every crazy combination of vitamins, diets, homeopathy, naturopathy, healer, energy worker, cranial-sacral therapist, shaman, neurologist, developmental pediatrician, speech therapist, occupational therapist who held out the promise that all would be okay if only I did whatever it was they believed would make her “okay”. 

“Will she be okay?”  

When we finally ended our campaign to cure our daughter, our campaign to help her accelerated.  But this didn’t happen in a vacuum.  We had support.  And the support we were given came from other Autistic people. In retrospect, had I known my friend Ibby, I would not have asked “will she be okay?”  Had I met Tracy Thresher, Larry Bissonnette, Jamie Burke, Jennifer Seybert or any of the other people I’ve had the good fortune to physically meet, I would not have felt the need to ask repeatedly whether my daughter would be okay, because I would have known she already was.  That question would not have occurred to me to ask, because these people, many of whom do not speak or more often than not do not speak, or as in Ibby’s case speak, but when stressed, is unable to, are living their lives fully and they certainly know joy.  Each of them has grown up in a society that underestimated them.  All of them have been doubted and had to prove their intelligence over and over to those who are unwilling to see the evidence before them.   

“Will she be okay?”

We, as a society, must stop forcing people we deem different or less than to prove their worth.  We, as a society, must look inward and start asking ourselves, not “will my autistic child be okay?” but “what can we do to accommodate Autistic people so that all can flourish and be included?”

In the end, that’s all I really want for both my children.  I want them to feel a part of a society that supports them. 

“Will my child be okay?”

She IS okay.  Right now at this moment.  It’s up to the rest of us to recognize this.

Em singing “Clumsy” for Ibby and Emily last night

Em's performance 

Autism Awareness ~ Not Fear

In the spirit of “Autism Awareness” month, I’ve decided to write at least a few posts this month devoted to the kind of “awareness” I would like to see more of.  Awareness can be subjective and the awareness being pushed, this month in particular but, most of the time is usually not the awareness I wish I had been given when my daughter was diagnosed almost nine years ago.  I believe awareness should help us, not make things more difficult.  In the best case scenario, awareness gives us options and makes us feel empowered to make better decisions.  Awareness is the opposite of ignorance, yet more often than not, when it comes to autism, so-called “awareness” becomes an abettor to ignorance.  This is not as it should be.  Awareness, in its true form, is a good thing, even if not easy, even if becoming aware is painful, even if awareness makes us uncomfortable, it (hopefully) leads us to act in a more thoughtful manner.

E., whose blog The Third Glance, is someone I urge everyone to follow.  I first became aware of E.’s blog shortly after I found Julia Bascom’s blog Just Stimming.  So within a 48 hour period I read Julia’s blog and then found E.’s blog and read My Cat is My HeroExecutive Function and Words, which describes in beautiful detail the pitfalls and distractions of having a conversation with a group of people.  Growing Up Autistic where she writes,  ”Anything related to my Autism was punishable, regardless of the actual magnitude or relevance of the offense.”  A little farther along she writes, ”I am Autistic. I was abused for it. My whole person was trained to be invisible and I was taught that I didn’t matter.

I read E.’s blog and I learned and my awareness increased and I started to see how things I’d been told, things I’d been made “aware” of were actually incorrect. E.’s blog was the kind of awareness I needed.  It was the kind of awareness that helped me make different decisions.  This was the sort of awareness that helped me understand, helped me take more informed actions, helped me seek out more information.   Isn’t that what “awareness is really all about?  Isn’t awareness suppose to be about gaining knowledge?  I want knowledge.  I don’t want knowledge disguised as fear.

Em, having appropriated my black shawl, takes a morning stroll in Tampa

**Em

When Insights are Speculation

One of the things I’ve felt particularly confused by is why my daughter sometimes resists communicating.  My thinking has been – why would she resist doing the one thing that will help her get along in this world more than perhaps anything else?  The other day, I had a moment of clarity.  I came a step closer to “getting it”.  And now, I think I understand.  Not only do I think I understand, but I am able to identify and relate to that resistance, because, I realized, I do it too!  There are a number of things I resist doing, even while knowing that if I just did them I’d feel better and would be able to weather the vicissitudes of daily life a bit better.  I’d be happier, calmer, less anxious, and yet knowing this, intellectually understanding that this is true, does not make my resistance any less.

know being mindful and in the present gives me clarity and a sense of calm, I do not otherwise have.  I know this, and yet find it extremely difficult to be completely present for more than moments at a time.  My daughter has little problem with this.  In fact, Emma is far more comfortable in the moment than anywhere else.  I remember when we were inundated with therapists coming and going during those early years of fear and panic.  Richard and I used to comment on the irony that Emma was completely present and in the here and now far more easily than we were and yet we were constantly encouraging her to talk about tomorrow or yesterday or any number of other topics that had little to do with NOW.    We were pushing her to move away from the bliss of this moment to join us in the fear and anxiety of the non-present moment, all for the sake of the larger picture, which in our minds was to have her join us in our world.  Even though our world was fraught with expectations, hopes, dreams, wishes and the inevitable disappointment those things often bring.

We used to joke that if we could bottle what Emma came to naturally we would have no cause for worry.  And that really is the crux of most conversations.  They are usually not about the here and now.  They are almost always about some other time, some other idea, some other person, some other concern that is not now.  And yet…  

I resist being in the present and Emma resists being pulled out of it.   And yet, we non-Autistics continue to insist our world is better, or superior even as many spend thousands of dollars going on spiritual retreats, reading books about meditation and going to workshops to teach us how to “sit”.  So the question I am now asking myself is this:  Can I find the grey area of encouraging Emma to communicate with me, something that is difficult for her and pulls her from the bliss of now, while giving her plenty of time to be present and just be?  And what about my own resistance?  Can I learn to meet Emma in her blissful place of now and resist the urge to go off in my mind to somewhere else?

Of course there’s always a danger in interpreting my daughter’s behavior as any one thing.  Her resistance, like mine, is probably made up of many things, and this could be just one reason.  Or I may have this entirely wrong and her resistance is about something that hasn’t even occurred to me.  Or perhaps it isn’t resistance at all and is something else or I may find, next time we type together and when I ask her why, she will tell me something I hadn’t considered.  And that’s the beauty of all of this, I can’t and don’t know until she tells me.  Until then it’s just speculation and me projecting my stuff onto her.   So that’s more for me to be aware of – seeing when and if I do that and understanding that I am.

Henry and I sharing a moment of laughter at Emma’s antics

H & A

The Influence of Others

On March 1st, 2012 my life changed.  I had no idea it was about to change.  I had no idea a single blog post would impact my life the way it did.  I didn’t know when I clicked on the link a commenter sent me on this blog, taking me to someone else’s blog, that I was in for the ride of a lifetime.

I had no idea.

On March 1st, 2012 I read Julia Bascom‘s post ~ The Obsessive Joy of Autism.  A post she’d written almost a year before, but I was only now reading.  Her post begins with this, “I am autistic. I can talk; I talked to myself for a long time before I would talk to anyone else. My sensory system is a painful mess, my grasp on language isn’t always the best, and it takes me quite some time to process social situations. I cannot yet live on my own or manage college or relationships successfully.”

I had no idea.

I have read that post half a dozen times since I discovered it.  And then I read her post just preceding entitled Grabbers.  ”The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”

Read that again – “The grabbers don’t believe that we can be happy or find meaning unless we are exactly like them…”

As a parent I want nothing more than for both my children to find their way toward meaningful lives, lived with purpose.  That they will then also find happiness I thought was a given.  Or so I always believed.  Does that mean they must be like me?  Do I believe that their ability to feel happiness is reduced, lessened, not relevant, inadequate, inferior, if it looks different from my idea of what constitutes meaning and happiness?  Can I let go of my preconceived ideas pertaining to happiness and what that means for anyone but myself?  Do I even know what happiness is for me, let alone another?

I had no idea.

These were the questions that began to gnaw at me as I read Julia’s blog, Just Stimming.  I urge anyone who is not familiar with her blog to read it.  Just Stimming is beautifully written as well as powerful, poignant, evocative and for me anyway, gut wrenching.

Again, from her post Grabbers –  (**Words highlighted in bold are mine, as in Julia’s post those words are italicized.)

The hands are everywhere.

They’re at our chins. “Look at me,” with a face pressed in so close to yours that you count the pores until they force your gazes to meet.

…protesting just means you need to be grabbed more often, with harder and more insistent hands, until you realize that the way you move is fundamentally wrong, as wrong and deficient and disturbing and dangerous as you are, and if you want to be counted as a “you” at all you must let them grab you until you can stop your self.”

I had no idea and now I realize that claim begins to ring false, even to my ears.  How was it possible to not have considered this?  But no.

I had no idea.

“…Until you realize that the way you move is fundamentally wrong…”

The post ends with, “In the end it just comes down to you are wrong, and for that you must be punished. It simplifies to your body is not your own, but it is mine.

I am about four years old, we are living in the first house I ever lived in.  Our baby sitter, Mrs. Williams stands guard outside the bathroom where I have been told I will stay until I have had a “bowel movement.”  I am sure she will not let me leave, but I cannot go to the bathroom on command.  I feel anxiety course through my body, it is as though my entire being is encased in a net, I can breathe, but I am trapped.  I sit staring straight ahead, wondering how long before she begins to yell at me.  I am terrified of Mrs. Williams.  She smells of antiseptic soap and wears a nurses uniform that crackles when she moves and those awful white shoes you see in hospitals that sound like she’s stepped in chewing gum when she walks.  Her skin is pasty white and hangs from her body as though it were half a size too big.   But mostly it is her eyes, partially hidden by glasses lens that  do not conceal her anger and resentment.  Those eyes hurt to look at because I see so much that isn’t said.

Finally I stand, tip toe to the sink, grab my drinking cup and fill it with toilet water then pour the water back into the toilet and flush.  I place the cup carefully back on the edge of the sink and wait for Mrs. Williams to open the door, allowing me to escape.

Your body is not your own, but it is mine...”

Julia’s blog was the beginning.  It showed me a different path and urged me to follow it.  I did.  Along the way I have found countless other blogs and have even been fortunate enough to meet many of the authors of those blogs.  Because of Julia’s blog I met my mentor and friend Ibby.  Because of Julia’s blog I read E.’s blog The Third Glance, which I intend to write about in the near future.  Because of Julia I have become a  (I hope) better parent.  Because of Julia I see the world differently.  Julia’s writing opened my eyes.  I wonder if any of us can ever really know how deeply our words can impact another.  I don’t know that anything I write here can convey what this woman has done for me or how enormously she has influenced me and because of her influence the difference she has made to my thinking and life and by extension, my daughter’s life.

Julia lit the way.

Julia created The Loud Hands Project.

Julia, with ASAN (Autistic Self Advocacy Network) put together the must read anthology, Loud Hands:  Autistic People Speaking.  

Julia is also the editor of the just released And Straight on Till Morning Essays on Autism Acceptance.  I just downloaded this book from Amazon for $2.99 and encourage everyone to do the same!

Julia’s writing gave me insight.  She confronted me with her truth.  She makes me think and rethink what I believe, what I think I know and she has made me question everything.  This post doesn’t do her justice.  How could it?

To Julia ~ Thank you  

Trashing Common Misperceptions About Autism

“Trashing Common Misperceptions About Autism and Autistic People and Creating a New World” – that’s what I first wrote as the title for this post, but it’s a mouthful and given the limit on characters on twitter, I revised it.

We just returned from Tampa where Richard, Em and I went to a screening of Wretches and Jabberers and to stay with my friend Lauri and her family, or as Em referred to it, “Have sleepover with Henry three.”  Which is an apt description because we spent three nights there.  Four days and three nights of paradise.  Four days and three nights of being with another family and a whole group of friends, new and old who didn’t judge, but rather embraced, a truly inclusive group, coming together, eating, laughing, connecting, talking and typing.  It reminded me a little of my experience at the Autcom Conference this past fall, except it was far more intimate and this time my husband and daughter shared the experience with me.  For four days we were given a glimpse of paradise.   A little peek into what our world could be like, but isn’t…  not yet.

Many people believe, erroneously, that Autistic people aren’t as interested in having friends, developing relationships or crave having mentors as we, non-Autistics.  Those people have never seen Henry’s smile when he is around his mentor and friend, Tracy.

Henry & Tracy@USF

Those people who doubt, didn’t witness Emma’s tears last night when we returned home and she made me promise we would see Henry again and have another “sleepover” with him and his family.  They did not witness Henry and Emma’s laughter and joy from being around each other.

Em and Henry hanging out together by the pool

E&H -Friends

Larry takes Emma’s photograph – perhaps the single greatest compliment a person could receive.  (Amy Sequenzia is in the background.)

Larry takes Em's photograph

They weren’t there to hear Emma tearfully say last night, “Please Mommy.  Go back to Florida tomorrow?  Play with Henry again soon?”

Just because someone cannot or does not express with words their love for another in the way we might expect, does not mean they do not feel it.

Many believe that if a person doesn’t speak, or speaks with a great deal of scripting and echolalia they are not interested in communicating or have little to say.  Those people have never witnessed a typed conversation between those so-called, “non-speaking” or atypical speakers.

Harvey, Tracy, Pascal and Larry, the stars of Gerardine Wurzburg’s documentary, Wretches and Jabberers

H,T, P & L.

Emma, being the consummate performer that she is, could not resist occupying the seat Larry vacated during a break at the University of Southern Florida, the day before the screening, where she wrote for all to read – “My mom and dad hope to meet more people like Larry and Tracy.  Wow(*!)  I am stirring up a crowd(*.)  time to work with people at home in new york to show them it is the intelligent emma there…”  *punctuation was added by me for the purpose of this post and indicates the smile Em gave and the pause she took between typing “crowd” and “time”.

Harvey, Tracy, Pascal & Em @ USF

Em Types@USF

Many people are surprised to learn that even those who do not speak can have wonderfully nuanced senses of humor, can enjoy deep, meaningful friendships, have a great deal to say and are often far more profound than most speaking people are in any given 24 hour period.

A conversation between Tracy, Henry and Emma about getting on board the “inclusion typing train” the night before the Wretches and Jabberers screening.  Tracy is to Henry’s right and out of the picture frame.

H &E type

Tracy, Henry and Emma make a “pitch” to Academy Award winning director, Gerardine Wurzburg who was standing nearby!

Em types

Em takes Gerry Wurzburg’s photo 

Gerry Wurtzburg

Many people assume Autistics have intellectual limitations commensurate with their “severe” and “moderate” labels, yet given appropriate accommodations this idea has been proven wrong again and again.  Yet another reason those labels are not only meaningless, but actually damaging.

Tracy types in answer to a question from the audience about the impact the documentary and meeting monk Hogan has had on his life.

Tracy @ W&J screeening

Many people believe inclusion of Autistics in schools will “bring the other children down” and that inclusion in society will be harmful, when the truth is the opposite with many studies proving this.   (Why this even needs to be proven, is something I am still trying to wrap my mind around!)

Mary Schuh (director of development and consumer affairs at the National Center of Inclusive Education Institute on Disability) and Henry at the Wretches and Jabberers screening at the Tampa Theatre, April 6th, 2013.  Henry is now attending the public school near his home.

Mary & Henry

These are only a few of the beliefs people have when it comes to autism and Autistic people.  Yet, if people were able to witness a weekend such as the one we just experienced, I guarantee their minds would be changed and we would be one step closer to creating a new world.

*Emma approved this post.