“Autistic People Are…”

Posted on March 2, 2013 | 10 Comments

*Following on the heels of the tremendously successful “Autistic people should…” flash blog last Saturday, today’s flash blog has bloggers adding their thoughts to “Autistic people are…”

Autistic people are…   

human beings.  

with the same rights as anyone else.  

equal.  

as diverse as those who are not Autistic.  

Autistic people are.  

Welcome to the human race.  

Now let’s start treating them as such.

For some history and the flash blog link, click ‘here‘.

As a direct result of last Saturday’s flash blog and thanks to the hard work by Yes, That Too, Unstrangemind and many other Autistic bloggers, this happened - Google Changes Policy for Autism 

While those policies have not yet gone into effect, it is hopeful news and a wonderful first step.

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Posted in Autism, human rights, neurodiversity

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Embracing Change

Posted on March 1, 2013 | 17 Comments

When Em turned two, I said, “I’d give a limb to have her ask for something.”

When Em was three, I said, “If only she could tell me what was wrong.”

When Em was four, I said,  ”If only she was able to understand.”

When Em was five, I said, ”If only she would sleep through the night.”

When Em was six, I said, ”If only she would learn to use the bathroom during the night too.”

When Em was seven, I said, ”If only I understood what she was thinking.”

When Em was eight, I said, ”I just want her to be safe.”

When Em was nine, I said, ”I want her to have choices in her life.”

When Em was ten, I said, “I think I’m beginning to understand.”

When Em turned eleven, I said, “Thank you.  Just thank you.”

Things continue to change.  We adjust.  I continue to change and my life gets bigger and fuller.  Em continues to change and her life gets bigger and fuller.  I didn’t fully appreciate or understand this when Em was first diagnosed, but I do now.

Everything changes.  I’m learning to embrace it.

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The Dentist and Tiny Steps

Posted on February 28, 2013 | 17 Comments

“Take it out!” Emma said.  ”Take it out!”

We were at the dentist’s office where she had just had a baby tooth pulled because it was obstructing the adult tooth from descending.

Five years ago when Emma had two cavities that needed to be filled on two baby teeth, we had to take her to the hospital and have her anesthetized as she could not tolerate having an x-ray let alone having a cavity filled.  The two baby teeth were capped and while she was unconscious the dentist applied a sealant to all her teeth as they are unusually porous and susceptible to cavities and plaque.  When she regained consciousness she cried, “Take it out! Take it out!  She then tried to pull the metal caps off her teeth.  I still remember sitting with her at the hospital, horrified as she screamed and cried and pulled at the caps on her two teeth, wondering what we were going to do.  After a few days, when she realized the capped teeth were not going anywhere anytime soon, she grew accustomed to them and stopped trying to pull them off.

Over the years Em has grown used to the dentist and dental visits and allowed him to clean her teeth without protest.  A year ago she sat still long enough to have multiple x-rays taken of her mouth and teeth.  This was a first!  Em was ten years old.  Now Em has four braces on her four front teeth and has a palate expander in place that she tolerates, though doesn’t much like.  (Who would?)  Two days ago she tolerated the dentist giving her a novocaine like numbing agent allowing him to pull her baby tooth.  This was a first and a huge milestone.

“Take it out!” she kept saying.  At first the dentist thought she was eager to have him pull her tooth, but I had a feeling she meant the numbing sensation.  ”Do you mean take out the tooth or take away the strange sensation?” I asked.  ”Take it out, Mommy.  This,” and she pulled at her upper lip, twisting it with her fingers.  ”I know it’s an awful feeling, but it will wear off, Em,” I told her and then asked the dentist how long he thought the numb feeling would last.  The dentist told me it should wear off in about an hour, so I set a timer on my phone and handed it to her.  She held the phone and watched the minutes tick by.  Meanwhile I hoped beyond hope the dentist had given me a correct estimate and wasn’t being optimistic.

After the tooth had been pulled and the bleeding had stopped, he came by to check on her and saw Em with my phone and the timer counting down the seconds and minutes.   He laughed, “Uh oh, you’re going to hold me to it!”  Then he said, “You better give her something hot to drink, that will speed up the process.”

“Good to know,” I said.  ”Hey Em, when we get home, I’m going to fix you some hot chai.  It will help that weird feeling go away.”  ”Take it out!” Em said.  ”Yeah, it’s going to make the numb feeling go away faster.” Em nodded her head and off we went with Em clutching my phone watching the seconds tick by.

By the time we arrived home there were about ten minutes left and Em kept repeating, “Take it out!  It’s okay, it’s okay.  Timer goes off and it’ll be gone!”

I fixed her some hot tea, told her to drink it and when the timer went off the numbness must have abated enough to make her less panicked.  About an hour and a half after the first shot she said she felt fine.

Tiny steps, taken one after the other over time, can and do take us far…

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Posted in Autism, dentist, Parenting

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Dreams, Love, Loss and Gratitude

Posted on February 27, 2013 | 11 Comments

I had a dream last night that unsettled me.  I dreamt that I was standing with some other people and saw a woman with her young son.  He was small, maybe five years old at most.  I was fascinated because he was holding what looked to be a “string” like Emma has, but much smaller.  It was proportionately the same size as Em’s given how little he was.  I turned away because Em was saying something to me and when I turned back around the mother and her son had walked away.  On the ground was the little boy’s string.  So I picked it up and ran after them.  As I approached the mother I held out the tiny furl of string and said, “I think this is your son’s.  I wouldn’t want him to lose it.”  The mother stared at me and said, “What is that thing?”

I said, “Oh!  I think it’s maybe his string.  My daughter…”  but before I could finish she interrupted me and said, “That isn’t ours.  It’s garbage.”  I felt as though I had been punched in the stomach.  And then she turned away, carrying her son who gazed at me wordlessly over her shoulder.  I stood there watching them walk away from me and felt stunned and confused.  I wondered if maybe I’d somehow misunderstood and that perhaps it wasn’t important to her child.  And then I felt ashamed for having approached them and said anything.  Ashamed that I’d assumed it was important because my daughter’s string is so important to her.  Ashamed too, that what is considered beloved and of value to my daughter is seen as garbage by another.  I stood there feeling these things and then I turned to find my daughter was no where in sight.  I felt that horrible surge of panic and adrenaline as I began going through the various scenarios of where she could be or what might have happened to her.

When I woke up I wanted to cry I felt such unspeakable sadness.  All morning that dream stayed with me like a shadow.  All morning I have felt fragile and on edge.  And then I read my friend Gareeth’s latest blog post.  You can read it ‘here‘.  It is a daughter’s moving and powerful tribute to her mother.  I cried as I read because it is so beautifully written, but also because it is about profound loss as well as gratitude for what wasn’t lost.  Loss of time, loss of relationships, loss of missed opportunities…  and as I read I realized that dream was also about loss and judgement and denial and how we harm those we love.  And now as I sit here in my studio looking out at the bumper to bumper traffic on the 59th Street bridge, the rain pours down.  I can hear drops splattering the top of the air conditioner that juts out of one of my studio windows in irregular plops and pings.  Rain drops stream down the windows obscuring my view and I am surprised that I hear no angry honking given how treacherous the traffic is, just the occasional siren can be heard in the far distance.

I feel so grateful to all those people driving their cars who aren’t honking at each other.  I feel so grateful that though the traffic is at a crawl, people are being patient and it gives me hope.  Let me be patient today with every person I come into contact with.  Let me give myself the same respect and patience.  Let me be aware and kind and respectful to others today.  Let me feel gratitude for all that I have.  Let me feel my feelings and not behave as though my feelings are facts.  But most of all, let me know the difference.

Em’s string – February, 2013

Em's string

 

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Posted in Autism, love, mother/daughter

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A Witness to Her Own IEP Meeting

Posted on February 26, 2013 | 31 Comments

This morning we went to Em’s IEP meeting…  with Emma.  I wrote about this ‘here‘ last week.  It was the first time we’ve done this and while Em chose not to add any goals when asked at several points during the meeting, she did express interest in speaking with me during our typing session together, later.  So I intend to talk with her about what was covered and see what she might like to add or discuss.  Most importantly, she was there to witness and hear the thoughts others have regarding her academic goals for the coming year.

At one point she began parroting every word I said.  It was like being in an echo chamber.  I looked over at her and it reminded me of when I was a kid and my siblings and I would do this to make each other laugh.  I do not believe this was the reason Em was doing this however.   Both Richard and I felt she was trying hard to show that she was listening and an active participant.   A few times when one of us directly asked her  whether she agreed or had anything to add she scripted, “Bertie kitty!  You have to get off the table.”  Or some other equally, (seemingly) unrelated script about my old cat who died five years ago.  I kept reminding myself that Em’s language default is a set of scripts.  The scripts may or may not be related to the conversation, but are most definitely an indication of intent and interest in being part of the conversation.

For almost an hour Em sat in her favorite chair during the meeting.  Not once did she try to get up and go somewhere else.  Not once did she indicate she wanted to leave.  Not once did she say anything to show upset or stress.  I was proud of her.  And I was glad she was there, not because she added any specific goals to the IEP, she did not, but because she was present and witness to a conversation regarding the coming year’s goals for her.   And her presence matters and changes the conversation, even if just slightly, it makes a difference.  As Richard and I continue to move forward in our journey to give our daughter the tools she needs to help us help her, this is an important first step.  I had no expectations going into this meeting regarding her input.  I had no idea what would happen or if she would want to leave.  All I knew was that I gave her the choice to come or to stay with her class and she asked to be present.  So she was and for that I am very grateful.

More will be revealed…

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Posted in Autism, IEP Meeting, Individualized Education Plan

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Tears and Love

Posted on February 25, 2013 | 57 Comments

This past Saturday we took Em to meet and have a session with Soma Mukhopadhyay, who developed RPM ~ Rapid Prompting Method for Autism.   I’ve written about Soma before, ‘here‘ and briefly on a number of other posts.  If you want to read those old posts you can put “Soma” into the search box and everything I’ve written mentioning her will come up.  A word of warning, however, those early posts show a very different mind-set regarding autism and my daughter than the one I now hold.  I find it difficult to read them because I had so completely bought into the Autism = tragedy mode of thinking.  As anyone who follows this blog knows, this is not the view I hold now.  It is good to see that my daughter is not the only one who is making progress!

One of the first things Soma did, (who has never met nor worked with Emma before) was comment to us that Em needs help to slow down.  This is identical to Pascal’s observations.  Em’s default is to script or point to the first thing she sees, whether that is a piece of paper or a key on a computer.  So despite the name of Soma’s program, for Emma this is less a literal “rapid” method and more a sustained level of interaction.  During the entire session Em remained focused and answered each of Soma’s questions appropriately.  There was no physical contact of any kind.  Rather Emma was asked to point to letters on a stencil board or to scraps of paper with different options on them.

Soma began with “I am thinking of a month when the leaves start to fall.”

Em then dutifully spelled “October” on the stencil board and my tears began to flow.  ”I’m thinking of the season when the leaves grow,” Soma said.  To which Em pointed to the letters to spell “spring.”  For forty-five minutes Soma covered math, the seasons, an Aesop’s fable, reasoning, science and for forty-five minutes I watched with tears in my eyes as my daughter attended with focus while holding on to her string.  Every now and again Em would verbally respond to Soma’s question and then glanced up at her with a little smile.  By the end of the forty-five minutes Soma asked, “do you have any questions?”

“Will you come live with us?”  Was the only question I could think to ask.  I was kidding of course, but it was the only way I knew to sum up how I felt.  For years now we have been trying to find a curriculum that will help Em learn in an academic setting.  For years we’ve tried, her various schools have tried many different methods, none of which have worked.  Yet here we were watching a program that not only worked, but that I could see the potential and the potential is limitless.

Yesterday I decided to try to combine some of what I saw Soma doing with what Pascal has been helping us learn with supporting her typing by creating resistance to her.  I sat on Em’s right side and brought out our iPad.  I also had Nic’s old globe and we talked about how we live on a planet called Earth. I showed Emma where we live and then where one of her favorite people lives in London, England and how to get to London we would need to fly over the Atlantic Ocean.  Em typed, with me providing resistance, “We live on a planet called Earth.  To visit England we have to fly over the Atlantic Ocean.”

This was the first time I have supported Em’s typing and given her the proper resistance.  I could feel it.  I could feel her reaching for the keys.  I could tell when I needed to provide more resistance, I could feel when her body was tensing and when she was trying to perseverate or trying to script.  This was the first time I have worked with Em that I knew without any doubt that I was not directing her at all.  She went on to type that if she could visit any other planet she would like to visit Mars.  We then ended with her typing her full name, her age and where she lived.  She knows all of this and so much more.

And finally, just finally I know she knows.  I know, she knows, without any doubt.

Tears and love.

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Posted in Autism, Rapid Prompting Method, Soma Mukhopadhyay

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“Autistic People Should…”

Posted on February 23, 2013 | 9 Comments

Today is “Autistic People Should…” flash blog day!  Please take the time to read these terrific posts by Autistic people who are blogging in to change the current views by non-autistic people of what Autistic people should or should not do or be.  Autistic people are taking these three words today and making them their own.

The Autistic People Should… Flash Blog

To give all of you an idea of what comes up if one types “Autistic people should” into a google search box at the moment ~

Yeah.

This has to change.  WE can change this, all of us, together, by spreading the word, sharing the flash blog link, tweeting the posts.  Let’s help change the way we think about autism and Autistic people.  We ALL benefit when we work toward ending oppression and respecting every person’s right to exist.

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Posted in Autism, Blogs By Autistics, neurodiversity

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Goals and IEP Meetings

Posted on February 22, 2013 | 30 Comments

My goals for my daughter have completely changed since she was first diagnosed with Autism more than nine years ago.  I have been thinking about goals a great deal because her IEP (Individualized Education Plan) meeting is coming up and for those of you familiar with IEP meetings, it’s all about goals, both long-term and short-term.  The parent’s goals, the teacher’s and therapist’s goals, everyone’s goals are discussed and written down.  Except for Emma’s.  What are Emma’s goals for herself?  For those who have children with either spoken or typed language this is an easy enough question to ask.  For those of us whose children do not it gets a bit more complicated.  Still, I plan to ask, even if I do not get an answer, whether verbally or typed, I will ask and I plan to talk to her about her IEP and what that means as well.  I may even type out some of the goals we are thinking about and ask her if she agrees with them.

I have to admit that sometimes when I speak to Emma about things, whether it’s about privacy, our bodies and bodily functions, the power of saying no, the importance of self and self-determination, or something like explaining what is going to happen over the weekend or asking her what her goals are at an IEP meeting, I catch myself wondering if she really understands.  What I have learned, what I continually remind myself is that it’s okay to wonder, it’s okay to feel all those feelings, but it’s not okay to act or behave as though she does not understand.  I have to speak to her as though she does understand, even when I don’t know that she does.  In the end I have to do this, because to believe that she can’t/ won’t/ doesn’t understand and to be wrong is a risk I cannot take.

 

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Posted in Autism, Education, Parenting

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The Tug of The Unknown

Posted on February 21, 2013 | 12 Comments

Ever since Em was first diagnosed I have looked to others to tell me what was best for her.  I have read countless opinions.  I have read hundreds of articles written by self-appointed Autism experts, educators and therapists.  I have listened to organizations, I have consulted doctors, neurologists and developmental pediatricians.  Emma has had quantitative EEGs, hearing tests, vision tests, colonoscopies, endoscopies, x-rays, and more hospital visits than any child her age should have to endure.  She has been prodded, poked, examined, questioned and discussed.  She has had more “professionals” come and go in her short life than I have in my entire 52 years.

A year ago I began meeting Autistic adults and what they were saying and describing first hand wasn’t what all those experts, doctors, educators and therapists had been telling me.  In fact what Autistics were telling me was often in direct opposition to what all those other people said.  The more I listened to what Autistics said and how they experienced their childhoods and life now as adults, the more I saw how wrong most of the professionals were.  It’s not that any of the Autistic people tried to predict what my daughter would be like as an adult, or that I came away believing I’d just met an older version of my daughter, but I’ve gained a clearer picture of autism and I am not as afraid as I once was.  As a side note, I have yet to meet a single Autistic adult who has assured me my daughter would be just like them, quite the opposite in fact.  Each and every person I’ve personally been in contact with has made a point of saying they are not representative of any Autistic child.

When I went to the Autcom Conference in Maryland last fall I met a great many older Autistic adults.  People who are in their 40′s and 50′s, some had been institutionalized, others lived in group homes, some lived with their aging parents, others lived independently, but all were Autistic and while it was surprising to meet so many (the hidden Autistic adults that our society knows almost nothing about)  it was a relief too because the fear I had and to a lesser degree still have about autism falls away the more time I spend with those who are Autistic.

My fear is about the unknown.  My greatest fears are those I create in my mind.  I have to remind myself of this on an almost daily basis.  I have tremendous fear.  I have always been fearful.  Long before I had children or got married I have lived with fear.  Fear of failure, fear of success, fear of relationships, fear of rejection, fear of abandonment, fear of being hurt, fear of hurting others, fear of saying the wrong thing, fear of life, fear of being.  You name it and I can figure out a way to fear it.  I have mornings when I wake up and feel fear like a second skin shrouding my body and mind.  There are days I cannot shake it.  There are days when the best I can do is get up and just put one foot in front of the other.  There are days when I cannot even acknowledge how scared I am.  A good day is when I keep doing the next thing that needs to get done and not say or do anything hurtful to anyone who crosses my path.  Those are the days when the image of myself is that of being covered in a thick cloak.  I keep my head down, keep to myself and do my best to not cause others pain.

Then there are the days when even that is too challenging a task.  Anger is almost always the result of tremendous, debilitating fear.  This is just one reason why I so vehemently object to the way in which autism is depicted in the general population.  Just about everything that is currently written by non-Autistic people regarding autism is fear based and increases fear.  And where there is fear, anger is not far behind.  Fear and anger cause many to behave in ways they wouldn’t, were they not feeling terrified and/or enraged.  Fight or flight.  I do both, sometimes within minutes of each other.  Neither is particularly helpful.

I know I still have a tendency to look to the “next thing” that will help my daughter.  I know this is what I have a tendency to do.  I am trying to trust myself and her more.  I am trying to remember that I don’t always know what will help and, as it turns out, neither does anyone else, but I can make sensible, informed decisions.  I am trying to accept that no one can predict with absolute knowledge what will occur in the future.  I am trying to parent my children with respect for who they are, what their interests are and not what they may or may not become.  I am doing my best to be present, to enjoy the moments of joy.    When I go off into future, fearful thinking, I try to gently pull myself back to the present without admonishment and judgment, but rather lovingly and with kindness for my own faltering, uneven progress.

Em – 2002

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Posted in Autism, fear, Parenting

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A Dream ~ Autism: The Documentary

Posted on February 20, 2013 | 27 Comments

Richard and I finished up our “staycation” by watching the Oscar nominated short documentaries at the IFC Center (Independent Film Channel) yesterday.  As I watched them I thought about the documentary I would most like to see.  It would be about Autism and Autistic people.  It would go back to Lovaas and Hans Aspergers, then Bettelheim, the evolution of what we thought we knew about Autism and those who are autistic and the ways in which we thought to “treat” it.  It would cover the move away from institutionalization to the current, though still negative thinking regarding the neurology we call Autism.  The documentary would have dozens and dozens of Autistic people of all ages, non-speaking, speaking, sometimes speaking, those who have careers, to those who are unable to work to those who work for themselves.   It would look at functioning labels and address why those labels work against everyone, it would cover the various myths surrounding autism and why those myths are ultimately destructive and limiting.  It would be a collaborative effort of Autistic and non-Autistic people.  It would be an example of what we can create if we work together, regardless of our neurology.  That’s the documentary I would like to see made.

Short of making such a documentary myself, I won’t hold my breath, though.  The whole idea of neurodiversity is considered radical and even threatening by many.  I understand that.  I understand that it is not a popular or particularly good way for organizations to raise money, especially those whose main goal is to fund research for treatments and cures.  I understand that change happens slowly.  I understand that any movement involving the rights of a minority moves slowly before it is embraced by more than a radical few.  But I also understand the power of good film making and that it can reach many more than any written piece could…

If you could see a documentary about Autism and Autistic people, what would it cover?

Em – 2003

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Posted in Autism, human rights, Parenting

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