Category Archives: Autism

Where There’s Anger There’s Fear

It’s taken me decades to figure out that whenever I am angry, fear is lurking.  All kinds of people talk about the association between anger and fear, but it was not a thought I was able to appreciate.  It’s still not the first thought I have when I am angry about something.  It’s not even the second thought.  In fact, I’m lucky if it’s something I can remember at all when I’m angry.  Yet, if I look back on all those years when I was so very frightened of my daughter’s diagnosis and what I assumed that meant for her future, I see how linked the two were.  But it was the fear that grabbed me by the throat and no matter what I did, it seemed unaffected and unwilling to let me go.  It was the fear that made itself known to me; the anger was far more subtle and insidious.

“When you sense a threat  your mind generates fear and anger.  The fear you generate is part of a flight response from your physiology. Anger is the emotional energy you generate for the fight against that perceived threat.  What can be confusing is that your mind creates fear and anger even when the threat is just imagined.” ~ Pathway to Happiness

I understood things like the above paragraph.  In a calm state of mind, it made perfect sense that my anger was rooted in tremendous fear, even if imagined.  What did the future hold for my daughter?  How was she going to get through life?  How would we be able to keep her safe?  How would she fend for herself?  Would she be able to fend for herself?  Who would take care of her once we were gone?  Fear.  Fear.  Fear and more fear.  And then, without even realizing it, I would find myself furious.  Enraged.  And my rage found the perfect target.  Autism.  Autism was what I was furious with.  Autism was what the problem was, so it stood to reason that if I could remove it, all would be well.  So this is what I set out to do.  Except that my daughter happened to be Autistic.  But if I didn’t say it that way I could continue to separate the two.  I could continue to tell myself I was fighting the autism and not her.  I could continue to believe that my anger with autism would not affect her.

“Anger is the natural emotional reaction to what the mind and imagination are doing.  The way to overcome anger is to change  how the mind imagines stories and how much you believe them.  When the mind imagines painful scenarios you naturally produce anger.  To reduce and eliminate the anger it is necessary to shift the stories that the mind imagines.” ~ Pathway to Happiness, Understanding Anger

That quote more than any other sums up exactly what happened.  I had to change the story that my mind was imagining.  Instead of thinking – my daughter is locked inside an autistic cage that I need to find the key to free her from – I had to examine everything I thought I believed and start from scratch.  I had to rethink how I viewed autism, my daughter and how the two were completely intertwined and one.  I had to dissect all my preconceived ideas about autism and Autistic people and what I thought that meant.  I had to be open to other ideas about it.

For me that began with reading books.  First books like Representing Autism by Stuart Murray, Unstrange Minds by Roy Richard Grinker and Autism and Representation Edited by Mark Osteen and then I found blogs written by Autistic people, see the Resources page on this blog.  From there I began developing relationships with Autistic adults, not just the occasional interaction, but real friendships.  People I have grown to love deeply.  I had to find people who were non-speaking, or spoke intermittently.  I had to find people who were obviously Autistic and couldn’t “pass”, I had to spend time with those people.  And what I found was that far from being miserable, these people were living their lives, doing things, had found purpose and meaning and were active in their communities.  The very things I had been told could not, would not be possible for my child.

Between stimulus and response, there is a space. In that space lies our freedom and power to choose our response. In our response lies our growth and freedom.” ~ Victor Frankl, Man’s Search for Meaning 

A and E_2185And so I found I had a choice.  I could choose to continue to live in fear of autism and all that people were telling me Autism meant or I could choose to embrace my Autistic child, learn, enjoy and let go of all that anger and fear as it came up, as it continues to come up.  Each time I feel fear and anger, and I do on a daily basis, I now know I have a choice.  I can fall into the fear and anger or I can step back from it, realizing it’s a mirage, realizing that as painful and real as it feels it is not a fact, it is a construct of my thinking and I can sit with it and not react to it.  Because my fear has me running away and my anger has me shouting, either action keeps me apart from others.  I have learned that the answer to both is to do something else.  And that is this – walk towards instead of away, speak lovingly instead of shouting and pushing away.

Rethinking Unhappiness

I was alerted to an article written by Dr. Michael Oberschneider entitled, Ask Dr. Mike: Expecting and Anxious About Autism.  In the piece he writes, “Some of the happiest parents I know (both personally and professionally) have children on the Autistic Spectrum.”  In the comments section people weighed in with their thoughts.   Many parents wrote of their outrage (and a few of their disbelief) that Dr. Mike suggest “happy” parents of Autistic children even exist.  They seemed to equate happiness with a lack of concern.  A number of parents suggested that Dr. Mike was simply wrong and refused to believe that he could actually know such parents.  One person went so far as to suggest he was trying to trump up more clients, which is an interesting idea, but the logic of that argument eludes me.

Before I go any further, I have to say this – there was a time, not so very long ago – when I was one of those parents who was incredulous that anyone could be “happy” and have an Autistic child.  I no longer feel that way and the reason is, I stopped trying to cure my child of herself.  I feel sad that this was my experience.  I wish it hadn’t been.  I know it negatively affected my daughter.  I know it negatively affected my entire family.  I know now that the depression I felt was because I believed I could cure her.  I was angry, I was depressed, I believed that no one could truly understand.  I felt alone and isolated in my sadness and rage.  I was engaged in a war only to realize I was fighting myself.  I know this now, but I didn’t then.  I wish I could hit the rewind button and do it over differently, knowing what I know now.  But I can’t.  I have to move forward.  In moving forward I am aware that I owe it to my daughter to make a living amends to her for my past mistakes.  Mistakes that I cannot know and will never know how badly they impacted her. Part of my living amends to her, beyond trying my best to be the best mother to her (presume competence) that I am capable of is to counter the negativity and fear that continues to swirl around the very mention of autism.

Today I am one of those happy parents Dr. Mike mentions.  I have two beautiful children, one who happens to be not autistic and one who happens to be Autistic.  And yes, there are times when I worry about both their futures.  There are times when one of them does something or is going through something and I find myself concerned.  Concern is one of those feelings, like worry, that actually does not help my child.  These are things I feel and it is up to me to figure out what to do about them.  Are there actions I need to take that will help my child get through whatever it is that is troubling them or causing problems?  Are those problems something I can control or are they things that require patience, compassion, love and support?  What can I do to accommodate my child so that they might better cope with whatever is going on?

The single biggest issue I confront repeatedly with having a child who is Autistic, with unreliable verbal language, is the misinformation, the fear, the misperceptions and the ignorance of those who meet her and what they then assume because of what they see.  Fear coupled with ignorance = prejudice.  We fear that which we do not know or understand.  We make judgments, we believe ourselves to be superior, we then behave accordingly.  None of this helps anyone.

It makes me sad that I was once so unhappy and that I attributed my unhappiness to my child.  I know now this was not true.  It wasn’t my child who made me so unhappy, it was my perception of her and what I believed that meant that caused my unhappiness.  I assumed things about her that I now know are not true.  They are not fact.  What is true, what is a fact is this:  My Autistic child is far more capable than most people give her credit for.  My autistic child does not use language the way most people expect.  Through a great deal of hard work and over the course of many years my daughter is learning to communicate through typing.  She has proven repeatedly that she is not only aware of what goes on around her, but she is extremely intelligent and capable.  At the moment she requires support to communicate, though we believe she will not require that level of support in the future.

My happiness or unhappiness has nothing to do with either of my children or my husband or my marriage.  My ability to feel joy is an inside job.  It takes work to excavate all those old beliefs, to throw everything you think you know and believe and start over.  I encourage anyone who is suffering and believes their suffering is directly the result of their child’s neurology to examine their beliefs.  Throw it all out.  It isn’t serving you and your suffering isn’t helping you help your child.  Isn’t that ultimately what all of this is about?  Aren’t we all trying to be the very best person we can each be?  Isn’t that what we hope and want to model for our children?  Isn’t that the point?

April 2013 – With my beautiful friend Lauri, another “happy” parent 

A & L

Love

For those who missed the fun, yesterday was the #AutismPositivity2013 Flashblog where people sent in thoughts about the theme “1,000 Ausome Things” in an effort to counter at least some of the ongoing negativity surrounding autism and those who are autistic.  All the posts have been compiled ‘here‘.  I helped tweet, share, google+ and pinned the posts as they came flooding in and WOW!  It was exhilarating to read so many words written by Autistic people, young and not so young, non-autistic parents, Autistic parents, siblings, cousins, educators and everything in between.  There were bullet points, numerical lists, stories, photos and even a couple of videos!

It was wonderful to see so many coming together over a shared idea.  A moment when the common goal was to rejoice.  A tiny moment when it wasn’t about anything other than what was AUSOME about a neurology we have come to call autism.  And it reminded me of something.  It reminded me of a time in my marriage when a therapist suggested Richard and I make a note every night, not of all that was wrong, or a list of our grievances, but a list of all the other had done right.  A list of all that was ‘good’.  These are subjective words, but we understood the goal was to look for the positive in the other.  And guess what?  It was the single best advice anyone ever gave us!  When we concentrated on that which the other was doing that was kind, took notice of the little gesture made, the loving glance, the dish that was put away, the trip to the store for the milk that no one had remembered to buy, all those little acts each person did, when those were noticed, they added up to something bigger.  They added up to an expression of love neither of us could have voiced.

That’s what yesterday’s Flashblog was about…  love.  Self love, love of another, hundreds of voices expressing love.

This image was created by the very talented Lori Miller Degtiarev of the blog A Quiet Week

Lori Miller Degtiarev

Emma’s Hope Book Celebrates 1000 Ausome Things #AutismPositivity2013

Today is 1,000 Ausome Things ~ The Autism Positivity 2013 Flashblog Event!!

For those of you who want the history of the Autism Positivity Flash blog in all it’s glory, this post from Outrunning the Storm is essential reading.

This flash blog event asks that we focus on “ausomeness” to counter all the negativity, fear, and very often, misinformation that surrounds autism, our Autistic children and Autistic people.  There is no way I can detail all the Ausome things about autism I’ve learned in the last year, let alone last nine years, since my daughter was first diagnosed.   So instead of using words, I am using images. Please enjoy this scrapbook, all taken in the last two months.

Larry Bissonnette (star of Documentary film – Wretches & Jabberers) taking Emma’s photograph

Larry takes Em's photograph

Emma types with support from Pascal Cheng.  Tracy Thresher (star of Wretches & Jabberers) and Harvey Lavoy sit to the left.

Harvey, Tracy, Pascal & Em @ USF

Emma with her friend Henry

E&H -Friends

Barb Rentenbach (author of the book, I might be you) – cheering Em on 

Barb Rentenbach

Emma laughing with Ibby (of Tiny Grace Notes)

Em and Ib

And this… just this… which if I could only send in one image, one snippet, it would be this – Emma soars and yes she and everyone else pictured above are the very definition of the word – AUSOME!

 

Autism Positivity & a New Blog ~ Where Art & Life Meet

Tomorrow is the Autism Positivity 2013 Flashblog event!  Anyone can make a contribution, whether you have a blog or not.  ANYONE!  Just follow the instructions on the link above and submit your word document, post, photo, poem or whatever you’d like.

cropped-autismpositivitybanner3

When I began Emma’s Hope Book just over three years ago, I did it because it seemed logical.  We wanted a document, a place to write notes, a place we could write our observations that extended family could read if they wanted.  Like those annual letters some people send out, updating family and friends about what’s happening in their and their children’s lives, this would be a place Richard and I could write about our daughter.  Never did it occur to me to ask our daughter what she thought, or consider how she might feel about having her childhood and life dissected for anyone to see who might stumble upon this blog. 1) I didn’t understand yet that she might be able to understand what a blog was, let alone able to read it, and 2) that she might have an opinion about it one way of another.

I cannot actually express how horrible it makes me feel to realize how wrong I was with not just the assumptions I made about my daughter, but the decisions I made and how I behaved as a direct result of those assumptions.  As horrible as it makes me feel, I have wondered and begun to ask her how it has made her feel.  My daughter surprises me consistently and constantly.  She shows me that what I think I know is usually incorrect.  She has countered my worries with her love of performing, her desire to be heard, her wish that people would listen to her.  (This is important and not remotely the same as my writing here about my thoughts and feelings.)  But I’m only now beginning to fully understand all of this.  And I cling, desperately at times, to the idea that at least I am beginning to “get it” now.  At least I have the chance to do things differently.  At least I have the opportunity to respect her, to ask her, to listen to her, to honor her and not assume she doesn’t understand just because she doesn’t look directly at me, nod her head and say some version of, “Yes, Mommy, I understand what you’re saying and this is what I think and believe about what you’ve just said.”

So no.  I didn’t know when I began this blog and I never once stopped to consider how it might feel to her to have her mother writing about her as I have, as I do.   But I am and I continue to, though now with her permission, and as I do, I cycle through the feelings of discomfort and I also know that writing is something I must do.  It isn’t a choice.  It’s what I do.  Hence the creation of my new blog ~ Where Art & Life Meet.  A second blog!  A blog about life, marriage, parenting, art, design and everything in between.  This morning I published the first post for it.  Please go over and say hello.  It’s more of an image friendly blog, a kind of blog meets Pinterest format and if you like it, I hope you’ll follow it. header-title

Watch Emma Fly!

Years ago Richard and I went to hear Temple Grandin speak (this was before the documentary about her had been made).  She had slides and gave a terrific talk about what it was like growing up as an Autistic child in a not autistic friendly world.  After the talk she went into the front entrance of the auditorium where she sat near a table displaying her latest book.  I went over to tell her how much I enjoyed reading her two previous books and to ask her if she had any suggestions for me regarding Emma’s inability to stay seated when on an airplane  prior to take off and again once we landed.  (This was something Em had a terrible time dealing with and would get a look of abject panic, before launching into a high volumed scream that had all the passengers covering their ears.  We were pretty desperate to find some way to help her cope.)

Temple said she was pretty sure there were sensory issues at work and gave some suggestions of things we might do to mitigate those.  I remember thinking that Temple in no way resembled my daughter and then made the assumption that Temple must have been far more able when she was my daughter’s age than my daughter currently was.  Whether this is actually true or not is something I cannot know, but a version of this thought process on my part is one I’ve repeated over the years on more than a few occasions.  So desperate to quell my fears and worries I have sought to find my daughter’s adult replica.  I have made the mistake of comparing an adult, possibly an adult who is now even in their 30′s, 40′s or even 50′s, and then drawn conclusions about what I imagine they were like when they were my daughter’s age.

Comparing Em to any adult has proven to be unhelpful to me, to my daughter and, I imagine to the person I am comparing her to, if they were aware I was doing it.  In addition, comparing a child to an adult is never going to give an accurate view of anything, there are too many variables involved.  And this kind of thinking completely ignores the fact that all human beings progress, evolve and change.  This is an obvious statement when applied to a non autistic child, but somehow I came to believe that my Autistic child was different.  I worried she would not progress.  I worried she would not be able to learn.  I worried because, in part anyway, we were given information about our Autistic child that has been proven to be not true.  We were given information that was in direct contrast to presuming competence.  Just as Emma no longer suffers when traveling in an airplane, she also now reads and writes and has, as of three days ago, mastered the complicated skill of a “catch” at her trapeze school.

Excuse me while I jump up and down while wiping away my tears of joy.  Emma wasn’t able to do a catch upon her first try or second or even third.  Em has been going to trapeze school for more than two years.  She also goes to gymnastics once a week where she has been working hard for almost three years strengthening her core muscles.  In the last month she is now able to do a cartwheel.  Emma began learning to type two and a half years ago.  She practices every day.  She practices reading too.  She practices and works really hard.  None of this has come easily or automatically, there is no “magic” involved, unless magic means being given the opportunity to work toward her strengths, to learn and practice and the belief that she can and will succeed.  Watch that video again, because all her hard work is paying off.  Watch Emma fly!

Bungee jumping barefoot – December 2012

photo

Functioning Labels

When my daughter was two-years old she was diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified).  People assured us she was “mild” and she would certainly be mainstreamed by kindergarten.  When she was not mainstreamed, people shrugged and suggested any number of things we might do to ensure she have that meteoric rise that everyone kept saying was just around the corner.  When that meteoric rise did not occur people stopped using the word mild and the word “autism” replaced the initials PDD-NOS on her IEP.

During those early years I didn’t spend much time considering or questioning functioning labels, what they really meant, how they were being used, other than to say when people inquired, that my daughter was “mild”.  And then we went to Em’s  neurologist where I happened to say something about how Emma was “mild” and the neurologist said, in a tone of poorly concealed shock, “Well no.  I wouldn’t say she was mild.”

“You wouldn’t?” I asked in surprise.  ”Well what would you say?”

He looked away from me before answering, “I would say she was… moderate, but mild?  No.”

I was stunned.  The idea that my daughter was not “mildly autistic” had not occurred to me.  Those two words that I had clung to during those early years, were suddenly ripped from my grasp.  I stood there trying to remember to breathe.  And I remember that sinking feeling in my gut.  That feeling you feel when you see something massive barreling toward you and you know there’s no chance you’ll be able to get out of the way in time.  There have been a handful of defining moments during this crazy journey that began when I first heard the word autism uttered in reference to my young child and this moment at the neurologist’s was one of them.  At the time I couldn’t speak.  What was there to say?  My knowledge of functioning labels was almost non-existent and what I thought I knew about them caused me to make a whole series of assumptions I would later find were wrong, each and every one of them, completely, categorically, wrong.

It has taken me many, many years to deconstruct what people are attempting to say when they use functioning labels.  I have found the use of these labels is uniformly inaccurate, misguided and does far more harm than good.  I understand they serve as a short-hand for insurance companies, schools and various medical institutions, but I strongly believe we as a society need to re-examine the words we are applying to a great many people and the disservice these labels are doing.  Rather than labeling someone mild, moderate or severe we should be looking at the specific needs each person has, breaking those needs down into more specific language that would better serve them.

As an example (this is in an ideal world):

A eleven-year old Autistic girl who has some verbal language, but relies heavily on scripts should be encouraged and taught to type and/or write.  An iPad should be made available to her during school hours and in the home.  Pointing skills should be a priority and supportive typing techniques should be explored.

Teaching grade level material in an engaging way, using visual, auditory, tactile and kinesthetic teaching techniques is essential.

As this young girl shows a need for intense sensory input and craves an audience, as well as displays strong leadership qualities – drama, acting and theatre classes should be included in her curriculum.  It turns out she is also very musical and is a talented singer with excellent aptitudes for both melody and rhythm – therefore music should be incorporated into her day as well.

This same young girl has shown athletic abilities.  She has core weakness and sequencing issues, therefore gymnastics, swimming and track should be essential components of her day, etc.

I could go on and on here, but the point is, if this same young girl is presented simply as “moderately” autistic how does that help her receive the specific things she needs in order to flourish?  Does the label help her at all or does it suggest a level of incompetence?   Is she relegated to a special education classroom where she is taught “life skills” at the exclusion of all else?  What does this functioning label do to our expectations of her?  Do we “dumb down” her learning materials because we assume she cannot possible understand?  Just because she enjoys watching the same video over and over for years on end, do we assume this is an accurate gauge of intellectual capability or do we entertain the notion that this is a way to calm herself with something that is familiar?  How does the label help her parents understand their child? How does the label “moderate” help educational and medical establishments help her?  How does a “moderate” label directly influence the goals that are then listed on her IEP?

Functioning labels are more than just meaningless constructs; they are doing damage. I understand the arguments for why people feel strongly they are necessary, but I disagree.  Functioning labels need to be tossed aside.  None are being served by them.

Em during her gymnastics class

IMG_4248

Related Posts:

What Is Autism?

Google that term and one is faced with a lengthy list of deficits.  The definitions of autism are cloaked in subjective language.  All the words used are in relation to non Autistic neurology: “severe impairment”, “life long developmental disorder”,  ”social impairment” and one site went so far as to say, “A mental condition in which fantasy dominates over reality, as a symptom of schizophrenia and other disorders.”  None of these “definitions” have been helpful to me, personally, nor have I found them to be factually correct.  The most common definitions of autism out there have increased my fear and encouraged me to pursue therapies and treatments that have done far more harm than good.

People often ask, “so what is autism exactly?”  Over the years I’ve had a variety of responses, but like the definitions above, they always seemed inadequate, unhelpful and inaccurate.  So now, when I answer that question all I can come up with is this:  Autism is a type of neurology.   Short and sweet.  No judgment, no comparison, just six words.  It is a neurology.  It’s the best way I know of to describe what is often mired in negativity and judgment.

Comparing Autism to non autistic neurology has gotten me into a great deal of trouble over the years.  I have found it is important that I avoid doing that.  (I’m keeping this personal.  I speak only for myself and do not presume this is how others feel.)  For years I worried about my daughter’s ability to have friends.  If I believe the common definitions of autism, her ability to make friends is “impaired”.  Yet the impairment is less about her desire and attempts to have friends as it is about non Autistic neurology being out of sync with hers.  When Em was in Florida with her friend Henry, they had no problem hanging out together, laughing and enjoying each other’s company.  Just because they typed to each other and didn’t engage in endless verbal conversation, didn’t mean they didn’t have a blast together.

If I listened to and believed the definitions of autism, I might think my child couldn’t learn to read or write.  I would be wrong.   Not only has my daughter learned to read and write, she also has learned to type.  Because I no longer believe the common definitions regarding autism I do not limit what she should or shouldn’t do.  I do not limit her future with set ideas about her future capabilities.  I have found it helpful to disregard those organizations and people who insist that Autism is a dreadful “affliction” and compare rates of autism diagnosis with cancer.

So what is a longer definition of autism?

It’s a terrific question.  Finding an answer that is factual as well as helpful to me, has been difficult to find.  However there are a few who have done a terrific job defining autism and in doing so have also helped me, personally.  Autistic Self Advocacy Network (ASAN) defines Autism ‘here‘ and this post by Brenda, over at Mama Be Good, gives a great, comprehensive answer to the question and at the end includes her personal observations of her child and what it’s been like to parent an Autistic child.

So I ask you, how do you answer the question – What is Autism?

Em on her way back to Henry’s house – April 2013

Em pets the kitty

Accepting Ourselves So We Can Accept Others

Accepting myself has been an ongoing process and it began well before I became a parent and got married.  It began more than seventeen years ago when I was flailing about, bulimic, unable to stop using my substance of choice (food) the way a drug addict uses crack.  I have written about this period of my life before ‘here‘, ‘here‘, ‘here‘ and ‘here‘ so I won’t go into great detail again now.  Suffice it to say, I was out of control, scared, suicidal and I couldn’t stop binging and purging.  And then someone who had once been an active alcoholic and obese, with more than a hundred pound maintained weight loss, said to me, “What if you accept that this is where you are?”

I remember I looked at her in shock.  Even now, thinking back to her words I find I am holding my breath.  It was such a stunning statement.  Never had anyone suggested such a thing.  To me it suggested complete defeat.  It was blasphemous.  It was the single most heinous suggestion I’d ever heard.  I think I said something like, “Are you kidding?  What do you mean?”  I can no longer remember her exact words, but she said something like, “You just told me you can’t stop binging and throwing up.  You just said you are out of control.  You just gave me a detailed description of what you do, how completely depressed you are, how you’ve tried for twenty-two years to control yourself and yet here you are, still unable to.  What if you told yourself – okay.  This is where I am.  I am out of control.  I hate it.  I hate feeling this way.  I can’t stop.  I can’t stop hurting myself.  I can’t stop binging.  I can’t stop throwing up.  I can’t stop thinking about food.  I can’t stop abusing myself.  This is where I am.  I accept that I am here.  What if you did that?

I didn’t have an answer.  I couldn’t think.  I felt like I was being given a pop quiz I hadn’t studied for.  I stared at her and then she did the next thing that I could not understand or wrap my mind around.  She opened her arms in embrace and hugged me.  I remember my confusion, the feeling that this couldn’t be right, that she was unhinged, that the only thing that could save me from self-destruction was more self-criticism, more self-loathing and more self-recrimination.  But I also knew what she’d said made some sort of bizarre sense; for twenty-two years I’d been upping the self hate talk to no avail.  All that criticism I kept dumping on myself had gotten me exactly where I was – at a dead end.  So I took a deep breath, held onto her hand and took a metaphoric leap into the unknown.  The unknown of acceptance.

Just in case you’re wondering, it didn’t happen as quickly or as easily as this may sound.  That leap took years of practice, of gently reminding myself that whatever I was feeling, whatever I was doing, I could accept that in that moment I was where I was.  It took years and years of cultivating awareness, of being able to see when I took up the whip that I could also put it down again.  Kindness, compassion, gentle reminders and acceptance, this is the road I have tried to stay on.  As I said, this is very much a work in progress.  Some call it a ‘practice’ because ‘work’ sounds difficult.  My experience with acceptance has been that it is “work”.  It is not easy for me.  It does not come naturally.  I have stumbled along the way.  I continue to wander off at times, only to be brought back, gently, kindly and with compassion by others who are on the same path.  It takes gentle reminders, many nonjudgmental nudges to move back onto the path of acceptance.  But I have seen the light and know to follow it even when it grows dim.

My experience with acceptance regarding autism has followed a similar trajectory.  You might think – why didn’t she ‘get it’ right away?  Why did it take so long for her to remember that what had worked for herself would work with this too?   And the only answer I have is this – I forgot and I couldn’t see that they were connected.  I didn’t see the value in accepting autism because I didn’t see my child as Autistic.  I saw her as having been diagnosed with a word I feared and didn’t understand, and therefore was not going to accept.  Again it felt like defeat to accept.  It has only been a little over a year that I was able to make the connection.  And the thing that helped me make the connection came in the form of yet another person who accepted me and all my fear, guilt and shame with compassion.  Once I was able to make the connection, became aware of my lack of acceptance and allowed that to be, without adding criticism and judgement to it, was I finally able to begin the process of true acceptance.

Acceptance of ourselves and where we are in this moment opens us up to the wonder of all.

Pascal, Emma, Harvey & Henry typing to each other – April, 2013

H &E type

 

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