Tag Archives: inclusion

Can Speech Challenged Students Get an Appropriate Education?

     What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.

     In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.

     There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.

      The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.

     There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?

“Talking is Hard”

*Emma gave me permission to post some of what she wrote yesterday during a meeting with a few of the people who are part of her team at her school.

Emma wrote, “Talking is hard because I like to say silly things that people take seriously and that is why I am misunderstood.”

In reply to a question about Emma’s thoughts on another class joining hers for a project they are working on together, Emma wrote, “Worrying that I will not be thought intelligent.  I am considered stupid by people who don’t know better.”

One of the staff commented that the more she writes with them, the more people will understand and know how smart she is.  Emma then wrote, “I know, but it’s hard work for me to write.”

This is something I think people may not fully appreciate – that communicating is tough and hard work for Emma.  It isn’t that she doesn’t want to participate in discussions or want to express herself and have conversations with people, it’s that what most of us take completely for granted is, for Emma, not easy and requires tremendous concentration and effort.

Someone else mentioned how Emma understands everything that people are saying and Emma wrote, “People think I can’t understand what they say, but my hearing is excellent.”

And a little later Emma wrote, “I know people don’t mean to be cruel, yet they are when they see someone like me.”

One of the team wanted to know if she was referring to specific people and how she deals with them.

Emma wrote, “They are everywhere.  I try to like them anyway.”

Before people comment on this post, protesting Emma’s words and insisting that people are basically loving and kind and that Emma must be unduly influenced by me, to write such things, I will tell you that from what I’ve witnessed when with Emma – people typically talk about her right in front of her, talk about her instead of to her, do NOT presume her competent, treat her as though she were at least eight years younger than she actually is, and though they may not mean, intend or feel they are being “cruel” this is the word Emma chose to write.  I cannot, even for a moment, really know what it is to be as intelligent as my daughter is and regularly treated as though I were not.  I will just add here that Emma is far more compassionate than I am.  So if anyone is being influenced, I hope it is me being influenced by her.

And for what it’s worth, this is what I think about all of this…  I think human beings tend to be neither saints nor evil, but that the vast majority of the human population has ingrained knee-jerk responses toward those who are different from them.  It is rare to find someone who does not hold some degree of prejudice, often without realizing it.  I believe most people, often unconsciously and without meaning to, respond to people who are different, whether that means their skin color, their accent, the way they dress or look or behave, with either fear, irritation, curiosity, jealousy, impatience or pity.  It is actually quite rare for a person to treat ALL humans they encounter with respect and as complete equals, without any trace of “othering”.  I believe segregation breeds “othering” and that an inclusive society of diverse people is the ideal, but that’s another series of posts.



Variations in Neurology and Other Ramblings

I say I’m an addict and you envision a bum passed out in a gutter on the lower East side.  I don’t look like that bum.  I don’t fit that image.  So you smile at me and say things like, “well, you can’t really be addicted to food, can you?” or “oh you’re not really an addict, why label yourself that way?” or “you just need to use a little more self-control,” or “why can’t you just stop?”

I call myself an addict, not because I am active, but because I cannot allow myself to forget that my brain is hard-wired that way.  Once active, I can’t “just stop.”  I call myself an addict because that is the best descriptor of how my brain works.  I accept this.  I know this about myself.  There’s no judgment, it is what it is.  I call myself an addict because I don’t have the wiggle room to say I’m not.  Whenever I delude myself into thinking maybe, just maybe I can do x, y or z just this once, I’ve opened the door to addiction and I can’t afford to do that.  Once I become active, I may be able to stop, but I may not and that’s not a risk I am willing to take.  For twenty-two years I lived as an active addict and by the time I finally found the support and help I needed, I was ready to end my life.  It is not a way of life I want to revisit.  (I’ve written about some of this, ‘here‘, ‘here‘ and ‘here‘.)  But people have a tough time with this concept.  People who aren’t addicts, find this difficult to grasp.  That’s okay.  They don’t need to understand it.  I just need to keep doing what I’m doing.

There are things I need to do that help me stay “clean”.  I need support from other addicts.  Those friendships and relationships are not only important, they are essential.  All of us have a similar vision for each other and ourselves.  We place our shared vision above individual personalities.  If a disagreement arises, we try to remind ourselves and each other that our common goal is far more important than whether we like or dislike someone.  We try hard to keep away from gossip, judgment and personal attacks as best we can.  We talk about progress not perfection.  We mentor each other and reach out to those who are struggling.

Within these principles there are a great many tools that help us.  For me, the single most important thing has been realizing that when I behave with integrity, and by that I mean, do not lie, cheat, take advantage of another, treat others as I would like to be treated, do my best to keep my energy directed at my behavior and actions, reach out to those who may be struggling, listen, learn, remain curious and tapped into the wonder of life and all that I do not know, then I will live a far better life than if I do not do these things.  This also is the only method I know of to stay free from my addictions.  It’s pretty simple, right?  Simple, but not easy to practice.  I often don’t get it right.  But I keep trying.

I bring all of this up because there are many of us who have neurologies that differ from the majority.  As I said, judging my own or anyone else’s as good or bad, better or worse is unhelpful.  It is what it is.  We can get caught up in semantics, we can argue about addiction or any other neurological variation from what is considered the “norm”.  But more importantly (to me anyway) is the vision.  Many do not agree with that either.  My vision includes a society of inclusion.  I am reminded over and over that compassion and love are actions.  Who I am and the way I behave have nothing to do with what others think of me.  There are people who need support to do things I can do without thinking.  Things I take completely for granted, like communicating.  There are people whose lives could be transformed from one of misery to one of purpose if their neurology was accommodated.

In yesterday’s interview, Tracy said, “The man I am today is because my autism is the gift I was given to be a leader to anyone who has ever felt less than human based on their appearance. Martin Luther King knew that hurt and he took it to the mountain of peace. My mind is more like a Mensa candidate than I can type. My life is a testimony to the lesson of humanity. Like Larry typed “More like you than not” is the guiding principle to inclusion.”

We are all more alike than we aren’t.

Live From The ICI Conference In Syracuse!

IbYesterday began with Ibby, as any proper day should.  Ib, assistant professor, blogger, activist, advocate and all around amazing human being, gave the keynote opening day address at the Institute on Communication and Inclusion here in Syracuse.  The room was packed.  Everywhere you looked people milled about from all over the country, ranging in age from under ten years to over seventy.  Some sat in wheelchairs, others moved their bodies back and forth, from side to side, some quickly in staccato gestures, others more slowly and rhythmically. Verbal utterances were not cause for stares or frowns, this was not a “quiet room” but a room filled with the sound of human beings in all their vibrant diversity, being themselves without censorship, without admonishment.  You can’t go to a conference like this and not get swept up in the beauty of unedited human beings being.

Ib & SteveJust prior to Ibby’s address I met the wonderfully talented, Stephen Kuusisto of the blog Planet of the Blind. Steve is a poet, author, professor, disability advocate and Fulbright Scholar.  Douglas Biklen, Dean of the School of Education at Syracuse University introduced us. This is Doug’s final conference as acting Dean and so I am particularly grateful to be here before he leaves.

This photo of Ibby and Steve Kuusisto was taken during Amy Sequenzia, Ibby and my presentation, “Blogging to Communicate.”

RosieAfter the keynote, we went to our “Hands-On Skill Building Workshop” with Rosemary Crossley.  Rosie is the one who developed facilitated typing more than 30 years ago in Australia, so I was very eager to meet her, finally.  Rosie went around the room and asked people to introduce themselves.  When she came to Emma, Em sat up and said loudly, “I don’t want to type!  My name is Emma.” To which Rosie said, “Oh! Hello Emma, how old are you?”  Em responded with, “I’m nine.” (Em is actually eleven, but tells people she’s nine, when asked.)  “Have you ever been to Australia?” Rosie asked.  “Yes!” Em answered. This time, however Rosie had a small machine that she held with a “yes” and “no” button on it and a laminated square with the words “yes” and “no”.  “Have you been to Australia?” she asked again.  This time Em, without hesitation pressed the “no” button.  A little later Rosie came and sat next to Emma and asked, “What’s your favorite color?”  While supporting Emma’s elbow, lightly with one hand, Em typed, “Pink.  What’s yours?” Then Em astonished me by continuing to type, “I hate yellow.”  Hate?  Seriously?  I hate yellow too, but really, I had no idea my daughter hated anything, much less a color!  Presume competence.  I’m going to reread that post I wrote…

RalphLater in the day Ralph Savarese and Steve Kuusisto presented on “Autism, the Brain and Poetic Creativity”  where they led participants in a poetry writing workshop.  After which Emma typed to Pascal, “really am telling my sameness self that its good to find different ways to that things and watching Ralph is fun.”  So there you go, Ralph.  A solid endorsement from Em.

Amy Sequenzia gave a personal and moving presentation about blogging and why she blogs, followed by me and then Ib who also spoke about why blogging is such a terrific platform, not least of all because it is interactive and immediate.  Ib then opened our presentation up for questions and comments and then…

Ib, Amy & Ariane

well, and then Em indicated that she’d like to say a few words, so Ib introduced her and Em took over, beginning with – “Ladies and Gentleman…” and ending with a list of all the various doctors, therapists, and people we once took her to see, followed by a list of all the people who now help us.  “Now we have Pascal and Harvey and Ibby and Ibbia (because Ibby has been given her own country, apparently) and Soma…”   Take it away Em!

It's the Em show

*I have to interrupt this post as I have to get to Anne Donnellan’s keynote starting in 30 minutes.  Peyton and Dianne Goddard sent me a copy of Anne’s book two weeks ago and I’ve been carrying it with me ever since.  So when I ran into Anne yesterday I pulled it out and showed it to her.  She is lovely and I cannot wait to hear her.  More to come!

One last photo though before I leave you…

Me with Amy and Ib – you guys rock!

Me, Amy & Ib


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


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.

Henry Makes Waves & Everyone’s An “Expert”

Yesterday the interview (published on Huffington Post, click ‘here‘) with Henry, the 13-year old non-speaking Autistic boy, son, brother, friend, student and all around amazing kid who has been denied enrollment to the public school across the street from his house went viral.  At the moment it has 152 comments and over 1,000 people have “liked” it, with almost 400 people sharing it on Facebook.  The comments began pouring in yesterday afternoon.  A few were particularly troubling for a couple of reasons.  The first being that a completely uninformed person(s) made broad sweeping generalizations about autism while bolstering their opinions with statements like this:  “and then there are the non verbal Autistic who need constant care.  One can’t tell if they understand language, but they can’t speak for some reason. I do know this as a fact from the Autistic that I’ve worked with in my youth.”  Another commenter suggested, “Maybe he should consider speaking …..If he wants to go to that school so badly…”  And yet another said something about how Autistic kids “drag” the rest of the students down.  All of these comments were uninformed, but the thing that was actually frightening  was when another commenter then referred to the first commenter as an “expert”.

So I lost it.  Completely.  Utterly.  Lost.  It.  Heart racing, hands shaking, head pounding, throat constricted, feeling nauseous, lost it…  Which is how many who are marginalized and live with prejudice, feel all the time.  That feeling of terror that their lives are threatened and in real danger as a result of incredible ignorance.  I should have walked away.  I should have done some breathing exercises.  I should have meditated.  But I didn’t.  Instead I reached out with words and hit back.  I used words to hurt.  I used words to wound.  I didn’t ask questions.  I didn’t wait for more information.  And here’s the thing, I don’t know that I was wrong to do so.  I feel ambivalent.  I feel I should regret my actions more than I do.

I responded with this: “…the degree to which you misunderstand Autism is actually more than frightening, it is terrifying. That you also worked with this population says more about the tragic state of the place you worked and their hiring policies, not to mention their training, which appears to be none, than your profound ignorance.”  To which he responded, “I wasn’t hired to do anything. The camp/school had normal and special kids and they had that one Autistic boy. I was nine. I wasn’t hired.”

People in the comment thread were describing a man as an “expert” who claimed knowledge of autism because he met an Autistic boy when he was nine years old.  At camp.  Nine.  And I thought of Joe Scarborough and his comment about the Aurora shooter.  I thought of Simon Baron-Cohen who actually is something of an “expert” and yet I completely disagree with his conclusions.  I thought of all the doctors, researchers, neurologists and “autism specialists” I’ve met, spoken with and consulted over the years, many of whom I do not agree with and some whom I do.  But the point is, so much of this is up for grabs.  There is a great deal of information out there that all of us have access to, but how do we know what is correct?  We’ve got doctors drawing conclusions that seem illogical and even irresponsible, while others whom we might agree with.  There are some very smart people out there working hard, publishing their work, making informed opinions, but how do we know who to believe?

I don’t.  What I do know is that anyone I read or hear I try (usually) to find out more about.  Who is this person?  What are their credentials?  What is their hands on experience?  And I get a second opinion from those who are autistic.  There are a number of people, all Autistic whom I particularly respect (this is by no means a comprehensive list and in no particular order, just thinking off the top of my head; please feel free to share anyone else I may have forgotten) Judy Endow, Lynne Soraya, Emily Willingham, Elizabeth J. Grace and Michelle Dawson.

A commenter on this blog wrote a hilarious comment about “Dr. Mom”, “Nurse Mom” and “Psych Mom”.  It was not only very funny, it was relevant to all of this. Who do we believe?  Hopefully not the guy who states they “know this for a fact” as compelling as the man might be for some.  And I’ll just add this; don’t believe me either.  I’m a mom.  I’m a writer.  I’m an artist.  I have opinions.  Sometimes I have really strong opinions, opinions that I think are right.  But I also know that over the years as I learn more, I no longer agree with many of the opinions I held a year ago, two years ago, three years ago.  My opinions change.  All I know is that I want to keep learning.  I want and try to keep my mind open.  Sometimes it’s really hard.  Sometimes I feel tremendous rage.  I don’t learn when I’m that angry.  But hopefully I calm down enough that I can go back to learning.

Let the learning continue!

Sleepovers and The Importance of Inclusion

Emma has asked to have a sleepover for months now.  She doesn’t want to have ‘a’ sleepover, as in a single sleepover, she wants to have sleepovers, the way her brother Nic does, almost every weekend.  She wants to have time away from us, where she is with another family and their children.  She wants to have the experience most parents and children take as a matter of course.  I’ve had parents say to me, “Oh sleepovers and play dates are highly over rated, she’s not missing much.”  But the truth is she IS missing a lot and the fact that she so desperately wants to have a sleepover is something I would assume ALL children desire.  I doubt any child doesn’t hope for this, whatever their neurology.  My guess is those who don’t ask for a sleepover are doing so not because they don’t want one, but because they do not have the ability to ask or communicate their wish.

The question has been how to orchestrate sleepovers for Emma when she’s never been invited to have a play date, forget a sleepover.   We have tried to have kids over to our house, but they all end up playing with Nic and while we’ve been able to get everyone to play a few games of duck, duck, goose, it still ends up being mostly a play date for Nic.  Last spring, Emma’s therapist, Joe invited Em over to his house for a sleepover with his wife’s god-daughter, and Emma had a great time.  But Emma wants more than a one time event and increasingly Richard and I have discussed how to get Emma over to people’s houses who have children Emma considers her friends on a more regular basis.

So while I was away at the AutCom Conference this weekend, Richard decided to do what he does best – take matters into his own hands.  He picked up the phone and called our friends asking them if Emma could have a sleepover at their house.  This is not something I feel comfortable doing.  It feels like an enormous imposition, I wouldn’t want to put people in an uncomfortable situation.  I wouldn’t want them to feel uncomfortable saying no, I wouldn’t want to feel the sadness I would feel if they did choose to say no.  Just as I cannot use restrooms in restaurants or stores unless I’ve actually bought something, I cannot call friends and ask if my child can come to their home for a sleepover…  but Richard can and did.  And they said they would be thrilled, in fact they said they were really honored that Em had asked to come to their house.

These are good friends, friends with twins, Nic’s age.  The twins, J & G have known Emma her entire life.  We adore all of them and have spent many a Sunday hanging out together.  When Emma heard that they’d invited her, she jumped up and down, threw her arms up in the air and twirled around while saying, “You get to have a sleepover at J & G’s house!   So excited to see J & G!”  Then she ran into her bedroom and came back out with her backpack filled with her nightie and a blanket.  Sunday night Richard and I received a text with these photographs.  (We have been given permission to post these photos.)

Emma used her skills of persuasion to get everyone to play a rousing game of Duck, duck, goose.

J & G & Em

The sleepover was a wild success!

When Emma came home the next day she ran over to me, threw her arms around my neck and said, “Do you want to know Emma’s sleepover was so much fun?”

“Yes!  I do want to know that!” I said.

“Emma had fun at Emma’s sleepover!”  She said and then ran into the other room to find her dad.  A few minutes later she came back and said, “Go to Gabby’s house?  Have a sleepover with Gabby?”  (Gabby is one of Emma’s cousins.)

I will have to take a page from Richard’s book, gulp down my nervousness and do something I would normally never do.  I will have to call my cousins and ask.  Maybe they’ll say no.  Maybe they’ll say yes.  Either way I have to ask because my daughter needs to do this.  She needs to have these experiences, they are important and my shyness and concerns have to take a back seat to the more important issue here, which is to do what I can to have Emma included.  The Autcom Conference gave me a glimpse into how important inclusion is, not just to those who are routinely excluded, but to all people; we all benefit from inclusion.