Tag Archives: Autism

Balancing Career, Family and Losing Things…

Posted on December 12, 2012 by | 19 comments

Balance.  Sometimes it’s impossible for me to balance family, career, marriage, kids, friends, writing, keeping up with emails, showering…  okay I do usually get the showering part in there somehow, but other things tend to fall through the cracks.  At the moment I’m consumed with work related things and so the showering part seems like kind of a pain.  Though the old “french bath” notion can be kind of awful if you are sensitive to perfumes and cologne, as I am.  The combination of body odor being masked by an aggressive dose of perfume, no matter how expensive, makes me a little nauseous just thinking about it.   So no, foregoing a shower isn’t an option, but other things fall by the way side or are delegated to others.  And while all this is going on I know I’m not alone.  I know others hold down full-time jobs, have kids, manage to get them fed and into fairly clean clothes and off to school without too many mishaps.

The basics do get taken care of, though Nic’s question of whats for dinner, and my answer, “Ummmm…. how about a bowl of Cheerios?” didn’t exactly gain me any parenting of the year points, Nic didn’t seem too traumatized and Em was thrilled.  In fact, she was already happily digging into her bowl of Cheerios, which is her second favorite meal falling only behind pancakes as her first choice.  I only learned a few months ago that Nic had begun wearing his school uniform to bed at night, “it’s easier, Mom” and I’m pleased to say I put a stop to that, though I was proud of his creative problem solving and told him so.   I am grateful for the small things…

Anne-Marie Slaughter wrote a piece for the Atlantic last summer entitled: Why Women Still Can’t Have it All .  That piece caused a stir, though I never was able to work out exactly why.  My only issue was with the word “still”, implying that we should be able to have it all or that someone else does, but women don’t.  The truth is, it seems to me, no one “has it all”.   I’m not even sure what that means really, but that’s probably not the point.  I did feel an uncontrollable urge to argue the definition of the word “all” and was only stopped by the lack of interest anyone I attempted to discuss this with showed.  The tricky balance of work, family, mother, wife, friend, while maintaining some semblance of sanity is one I continue to look for, but never seem to actually find.  Things just do get forgotten or lost in the shuffle.

I have mail that remains unopened, I know I received some emails that I now cannot find, which require answering.  I’ll try to find them later.  I know there are things I can’t remember that were on my to do list, if only I could remember where I put that list and it’s not a coincidence that the single most common question in my family is:  “have you seen my glasses?”  that or “anyone seen my keys/phone/wallet?”  And the predictable answer, “if I could find my glasses I’d help you look.”  Nic thinks all of this is hilarious and has taken to falling on the floor in feigned horror when either of us ask, our voices suggesting the panic we are already feeling, no matter how many times in a single day this occurs.  That both his parents seem so completely incapable of keeping track of these everyday items does not portend well for either of our children, but at the moment this thought hasn’t occurred to them and we aren’t planning to mention it.

Em (wearing her favorite hat) made it out of the house this morning in one piece…

*Panda

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An Unexpected Response and The Importance of Trust

Posted on December 10, 2012 by | 41 comments

During my supported typing session with Emma Saturday evening we discussed Little Red Riding Hood.  I asked Em what she thought Little Red was bringing Grandma in her basket.  Emma typed “blueberries”, which seemed like a terrific guess, particularly as Little Red could certainly have picked them herself, placing each blueberry in her basket as she made her way toward her Grandma’s house.  We discussed the wolf and I asked questions I thought it likely Em knew the answer to, but that I wouldn’t expect her to answer verbally, just as Pascal, who is helping me, advised.  Eventually I asked, “Em, what would you do if you were asleep in your bed and woke to see the big bad wolf?”  To which Emma typed,  “I would go to the three little pigs house”.  Though she paused after she’d typed, “I would go to the”.  I urged her, “Take your time Em.  Write what’s in your head.”  She looked at me and whispered, “three little pig’s house.”  She then typed the rest of the sentence with me.  “I would go to the three little pigs house.”

I looked at that sentence.  It took me a second and then I laughed and said, “Wow Em.  That is such a great idea!”  After all the three little pigs have had run-ins with the wolf.   They know, better than anyone, how to deal with him AND they figured out how to build a wolf-proof structure after much trial and error that the wolf cannot break into and where they are safe.  Emma grinned at me and then, very sweetly, patted my cheek.  I took her loving gesture as a sign of her encouragement and patience with me.

Supporting Emma’s typing is not easy.  It is actually much harder than I imagined it would be.  I am pretty sure Emma spoke the last four words of that sentence because she was not able to trust that I was able to support her well enough to type that.  I think she sensed my hesitation.  I had no idea what she was trying to type and because I am not well trained and am very new to this, my support varies and is not consistent yet.  I am hoping I will learn and be able to give her the support she needs to flourish and eventually type independently.  What is fascinating about FC (facilitated communication, more on that ‘here‘ and ‘here‘) is that had I asked this same question of Emma and expected a verbal response, I do not believe she would have given me this answer.  If she had, I would have been absolutely blown away.  These are not the types of things we have been able to “talk” about.  Typing is giving her the tool she needs to be able to express herself in a way that has not been possible to date.

As an aside, two years ago we hired a woman who developed a literacy program for Autistic children.  While I have some serious misgivings about certain aspects of her program, the literacy piece is extremely well mapped out and it was what finally gave Emma the tools and practice she needed to learn to form the letters of the alphabet and began to read, write and type.  Now two years later as a result, Emma is reading and writing at a second grade level, though it is probably much higher.  Emma was not taught through phonetics, in fact we never even taught her the names of the letters in the alphabet.  For two years Joe and I worked with Emma every day on her literacy program.  For more about that program you can read ‘here‘ and ‘here‘ or put the word “literacy” into the search box and everything I’ve written on the topic will come up (just be aware my ideas and views have changed pretty dramatically since many of these posts were written.)

I mention all of this, because I want people to understand that Emma did not sit down one day and begin typing in full sentences.  She did not suddenly pick up an encyclopedia and begin quoting from it.  I know there are those who have.  I wanted to pursue supported typing with Emma after going to the Autcom Conference this past October and meeting Pascal.  He was kind enough to speak with me about Emma and gave me some advice.  I didn’t know if she would be a good candidate for FC.  After all she has some language and typed independently with her two index fingers.  But I want her able to converse on a more sophisticated level.  It seemed to me, FC might be the method by which she would be able to do that.

I am always in awe of Emma’s patience with this world, with all of us, with me.  Her inner strength and resilience are incredible.  She has been ignored, doubted, talked down to, spoken of while she stood right there listening as though she were deaf, she has been misunderstood and treated as though she were incapable of understanding.  Were I treated this way I would be in a state of near constant rage, alternating with debilitating depression.  If any one of us were treated the way so many view and treat Autistic (whether non-speaking, marginally speaking or fully speaking) people, most of us would want to retreat from this world and lose all faith in people, even people we love.

I do not know how or where Emma gets the strength to greet each day with such cheer or how it is that she is so good-natured, kind and loving after all she has been through in her short life.  But she has and is.  I began this blog thinking it would be a document of Emma’s progress.  But in fact, this blog is a document of my progression.  I look back on entries made just a year ago and see how completely my ideas about Autism and my daughter have changed.  So much of what I thought and believed I no longer agree with or feel.  I have resisted the urge to delete all those past posts, because as horrified as I am by so many of them, I also know they are what I believed at the time.  My own journey is a reminder that we neuro-typical (not otherwise specified) adults can and do change, sometimes it just takes some of us a bit longer.

Me, Pascal, Richard and Em during our first “training” session

8E&P
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“Burden”? I Don’t Think So.

Posted on December 7, 2012 by | 20 comments

The roller coaster I call “autism” is less actual and more a description of my emotions, expectations and judgments surrounding specific things such as communication differences, internal issues, pain perception, sensory issues and the different ways in which Emma takes in information as opposed to the way my (more often than not) non-autistic brain works.  (My friend, AspieKid calls brains like mine NT-NOS, which I think is a hilarious and fitting acronym.) It is a “roller coaster” of my own design and construct.  A roller coaster being an accurate description of my emotional state, something I’ve grappled with my entire life and certainly well before I ever met my husband and had children.  Suggesting “autism” is the root cause for those pre-existing twists and turns my emotions tend to take or pinning the psychological upheavals I’m experiencing onto “autism” is not only wrong, it’s dishonest.

The truth is, I’ve always been a bit high-strung.  I live in New York City, a city whose inhabitants wear their neuroses proudly.  Neuroses in New York city are treated the way a runny nose is looked upon in the mid-west.  No big deal.  New Yorkers have melt downs at the drop of a hat.  I’ve seen fist fights break out between grown men in the middle of an intersection because of a perceived insult, people routinely scream at each other and cut each other off while driving.  Moms pushing babies and toddlers in Hummer-sized strollers wield them like tanks plowing a path for themselves along clogged sidewalks like Moses parting the Red Sea.  People think nothing of getting into loud arguments with lovers, neighbors, friends and strangers in the middle of the sidewalk, forcing pedestrians to walk around them.  It’s a city of ids and super egos.  It’s a city that is (perhaps) an exaggerated version of what one sees anywhere in the world.  People are capable of some pretty dreadful behavior.  Add a child with a different neurology to that already fragile, high-strung mix and you’re going to get some interesting results.  To then conclude that autism is to blame, defies all logic.  No one would do that.  Yet people blame their bad behavior, their inability to cope, their sadness, depression and general irritability on their autistic child all the time.

Suddenly it’s autism and Autistic people who are a “burden” to society.  Autism isn’t a “burden”.  It’s the negative views of autism, it’s the autism = untold horror, it’s the perception of autism and the lack of understanding and services, the lack of training and programs in our schools so they can help our Autistic children learn in a way that will ensure they flourish.  The “burden” is not our Autistic child on society.  The “burden” is the lack of support and adequate help families need so they can better support their child, giving them the sort of assistance  they need to thrive and flourish, a child who will one day become an Autistic adult and, in an ideal world, an active member of society.  We have to move away from this idea of Autism = burden.  Autism = tragedy.  Autism = _______ fill in the blank with a negative word.  We need to abandon our preconceived notions of what a non-speaking Autistic child cannot do.  We need to open our minds to the idea that our children are capable of far more than we may believe or can fathom.  We need to begin looking at what is good about Autism and the countless ways in which Autistic people can and do contribute to this world.  We need to remove the stigma and negativity and replace it with a more balanced and yes, positive view.

Imagine a world that includes Autistic people, accommodates Autistic people and stops shunning, restraining and abusing them.  A world in which it is not okay to have seclusion rooms and restraints, where a non-speaking person is treated with respect and without prejudice and where it is not assumed that because they do not speak they have nothing to say.  A world where people finally understand the burden isn’t the Autistic person, whether child or adult, it’s the lack of services, the judgments and the scare tactics being used.   Autism is big business and there is no better way to ensure dollars continue to pour in than when we are terrified. Let’s change that.

Having a child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.  Having an Autistic child is joyful, exhausting, frustrating and the single most extraordinary experience a human being can have.   One can say that about a great many things in this life.  Let’s stop blaming Autism and our Autistic children for the ills of the world and the bad behavior displayed by people.

Emma and her infectious laugh

Em

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What Makes You Happy?

Posted on December 5, 2012 by | 20 comments

Happiness is….

My husband

*Richard

Our son

Nic

Em

A flamingo

Our fabulous kitty

Merlin and the Gator

This…

Nicw:dogs

and this…

Emonherpogostick
the ranch…

6AM

7:00 AM in New York City

AMin NYC

And this… this one’s for you, Brenda

Ilovemyshoes
and this… Angie, love and kisses… (Em took this and it’s pretty blurry, but you get the idea!)

kisses

What makes you happy?

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To the Person Who Googled “I don’t know if I can handle Autism”

Posted on December 4, 2012 by | 28 comments

I have three things I need to say to you.

First.  Come.  Talk.  Find a safe place where you can talk without being judged, somewhere private, somewhere and with someone(s) who will understand and listen.

Second.  Fear.  Feel the fear.  It’s impossible for me to talk about autism without talking about the abject fear I used to feel, every single day, every moment.  They say fear can be informative.  This was not my experience of it in the beginning, I was running too fast and doing so much to avoid it.  Fear drove me to do a great many things I regret.  I wish I could tell you I have no regrets, but I do.  So, so many regrets.  Avoiding the fear is just one of them.  I wish I’d sat with it.  Leaned into it and listened to it, without believing what it whispered to me as though it were fact.  Listen to it, but don’t believe it.  Who knows what I might have learned all those years ago.  Who knows had I done that, what mistakes I might have avoided.  Who knows?

You see, fear was the driving force behind my relentless search for a “cure”.  Fear is what made me think anything I did was better than doing nothing.  Fear drove me to rationalize some dangerous and very risky “interventions” because I thought to do otherwise was wrong.  It was my fear that kept me up at night, on the computer, typing one more search word into Google’s vast engine, hoping I would find the thing, the remedy, the treatment, the pill, the tincture, the doctor, the nutritionist, the biomed doctor, the QiGong Master, the homeopath, the naturopath, the GI specialist, the thyroid specialist, the speech therapist, the occupational therapist, the cranial sacral doctor, the shaman, the Zuni chieftain, the psychic, yeah you read that right, the psychic, each and every one of these people I put my faith in.  I convinced myself that this person, finally would be the ONE.  They would reach out their hand and show me the path I needed to take.

All those words used to describe autism and Autistic people, our children or parents or siblings, all those words like, “burden”, “epidemic”, “crisis”, the war terminology evoked telling us how we must “fight” and “combat”, all those words like crumbs left in a dark forest were words I believed and used and never, never once during those early years did it occur to me to question them.  For those who did, well, they obviously didn’t have a child like mine.  You had a child who was less profoundly affected by autism than mine.  This was my thinking, this is what I believed in my heart.  (This is my story, it may not be yours, but it is the only story I can tell.)

Third.  There is a documentary I love.  I have watched it many times now.  It’s called Wretches and Jabberers.  I’m not going to tell you more, you just have to see it for yourself.  It’s available on iTunes, Netflix and Hula.   You can purchase a copy from Amazon.  Even if you ignore every other thing I’ve written here, just watch it.  It is a documentary that every human being on this planet should see, because it is about more than just autism.  It is about our beliefs and how our beliefs make us behave in ways we might not otherwise condone.  It is about prejudice and fear and ingrained thinking and the inherent limitations all of that encourages for those who are different.

And finally remember this – just because someone does not speak, does not mean they have nothing to say.  Just because someone cannot make their needs known, does not mean they have none.  Just because someone does not tell us they love us does not mean they do not.  Just because someone does not look at us, does not mean they do not see us.  Just because they do not seem to understand in a way that we recognize, does not mean they do not and cannot.  Just because we think they are ignoring or cannot hear us, does not mean they are or do not.  Just because we think someone cannot write or read does not mean they can’t or never will.

Just because we feel, in this moment, we cannot handle something does not mean we can’t.  With support, we can and we will.  And so will our children.  They can, they do, and with help, they will.  Believe this and you will not only help your child and yourself, you will help the world and all human beings who inhabit it.

Choose to believe.

Emma on her 4th Birthday – 2006

Em - 2006

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Sensory Overload and Sensory Cravings

Posted on December 3, 2012 by | 33 comments

My friend Ibby posted this video on her Facebook timeline (for those triggered by loud noise, flashing lights and/or prone to seizures, do NOT watch or at least turn the volume way down and stand back)  

A twitter friend, after I reposted this video, wrote that this was why he wears headphones and I tweeted back that while Emma is sensitive to some noises, for the most part she craves noise and typically turns the volume up as loud as it can physically go on both music and favorite movies, much to the horror of our various neighbors.  Even though we live in New York City (a place that is, for many, a sensory overload), people get cranky when woken at 6:30AM on Saturday morning to the strains of Michael Jackson’s Beat it.  Even hard-core MJ fans protest at the volume Emma prefers and at that time of day.

My twitter friend tweeted back, “I like certain noises, Avenge Sevenfold. ;D  It’s noises other than the one I’m trying to focus on that are the problem.”  And this is exactly the important distinction that I often forget or have trouble understanding.  Unless you have sensory issues, like the ones depicted in this video, I think it’s really hard to fully understand how debilitating sensory overload can be.

A couple of months ago I went to do our weekly grocery shopping run at Whole Foods.  Typically I go every Saturday in the early afternoon.  This is a time that isn’t too crazy, the lines aren’t insanely long and often it’s even comparatively quiet.  As I stood in front of the check-out person, the cashier next to her began loudly unfolding a paper bag.  The noise was deafening, a kind of snapping sound followed by crackling.   I actually felt physical pain from the noise.  My cashier looked over and laughed and then another cashier did the same thing with one of her bags.  In response the first guy did it back and suddenly I was in the midst of a cacophony of bags being banged opened, like a series of gun shots going off.  It was horrible. I stood there stunned.  I became so disoriented I could barely think and then I felt a surge of rage. How dare they make this kind of noise with those paper bags! How dare they behave this way!  I looked around trying to figure out who I should direct my anger to and noticed that not only were they smiling, some were even laughing and so were the other customers.

They were having fun!  I was astonished.  What was so incredibly painful to me, was amusing to others.  As I left the grocery store I reflected on sensory issues and how overwhelming they can be. I thought about Emma and wondered what it must be like for her.  Does she feel this way when she needs sensory input and cannot get it or is told she must turn the volume down?  I know there are certain noises she cannot tolerate, like the cuisinart.  She hates the sound it makes and will only tolerate it if I allow her to control it and put it on “pulse”, the same goes for the electric mixer.  If one of us sings along to music she’s listening to she can’t stand it and puts her hands over her ears.  (I completely understand her doing this when I sing, I’m pretty much tone-deaf and it IS painful to listen to for even those with no sensory issues, but she does this to anyone who sings along.)

After watching the video I posted above, I was grateful for the ending.  Not because it changed anything or showed some obvious solution, but because it was one human being taking the time to notice another human being in obvious pain without judgment or condemnation.

As an aside – I would love to hear from those who need and crave sensory input.  What is that like?  What does it feel like?  Is there anything you’ve done that has helped you.  Any advice or ways we can make your life more tolerable during those times?

Emma – 2007 – Auditory Integration Therapy

Em

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Two Autistics Spoke. How Many Listened?

Posted on November 30, 2012 by | 68 comments

Yesterday C-Span covered “Lawmakers Look into Federal Response to Rising Rates of Autism.” For those of you interested in seeing all 3 hours and 48 minutes of it click ‘here‘. You can also read all eight transcripts of testimony by clicking on each link ‘here‘.

There were two Autistic people of the eight who spoke.  This, in and of itself was significant.  The last two speakers were Michael John Carley, executive dircetor of Global & Regional Asperger Syndrome Partnership (GRASP) and Ari Ne’eman, President of Autistic Self Advocacy Network.

Michael, at one point said, “…research is geared towards the future, and not where the greatest need lies, which is in the present. Today, the amount of services we collectively provide is like one page out of War and Peace when compared with what’s needed.”

He went on to talk about language, “Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat” …”

“Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them.”

Ari Ne’eman spoke last.  His was a riveting and powerful speech in which he spoke to the “epidemic” of Autism, “If we want to put the idea of an “epidemic” to the test, one of the most compelling lines of research we could pursue is an epidemiological study of the rate of autism among the adult population. A recent study of this nature conducted by the United Kingdom’s National Health Service found a comparable rate of autism in adults as in children in England.” 

Ari spoke of those who are non-speaking Autistics,  “If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today.” 

He went on to point out, “Autism Speaks and the Simons Foundation – devote even less to these areas, with Autism Speaks investing approximately 1% of its research budget to studies on the quality of services to Autistic people (and less than one quarter of a percent to Autistic adults) and the Simons Foundation making no investments in either area. It cannot be doubted that when it comes to the needs of Autistic people today both the public and private research agendas are quite simply not responsive to the priorities of the Autistic community, itself. ”

And he talked about the importance of Medicaid, the importance of providing assistance to those just entering the work force and those who would like to, but do not have the supports in place to do so.

Ari ended with – “I want to thank the Committee members for allowing my community – the Autistic community – the opportunity to have a voice in these discussions. The challenges society currently faces in integrating and supporting Autistic people and our families are not new. We have faced these challenges and made tremendous progress with other disability groups in the past. I believe that at the end the day this is a civil rights issue. I believe in the ability of the United States of America to guarantee the civil rights of all of its citizens. Autistic people want and deserve the same things that anyone else wants – inclusion in our communities, the opportunity to go to school and get a good job, the chance to make our voices heard about the things that matter to us. With your help, we can make that a reality.”

His final words were, “I look forward to hearing your questions.”

I was eager to hear the questions that would undoubtedly be asked of both him and Michael after such terrific speeches, particularly as they are both Autistic, the very people this entire hearing were meant to care about and want to help.   So I waited.  And then I waited some more.

Finally there were a few, but the majority of people who spoke continued to repeat those words that Ari and Michael had cited, as though they’d never been said.  It seems we care about Autism and our Autistic children specifically, but when it comes to “Autistic people” in general, we don’t care so much.

And so I’d like to know, Why is that?

How is it that we can say we “care” about Autism and those who are Autistic yet not fund programs that will make their lives better?  How is it we can use words usually reserved for war and ignore that these words make those who are on the spectrum feel badly about their very existence?  Is this how we want our children to feel?  Do we really want our own children to feel their existence is called into question?  Let’s just say, for the sake of argument, that our Autistic children, whether they speak or not, whether they are in a special education classroom or are mainstreamed, let’s just say, ALL of them can and do understand what is being said about them, but they cannot tell us or do not have the ability to communicate how that feels.   Can we at least imagine what that would be like if this were done to us?  Can we try, just for a moment to have the “empathy” needed to imagine?   Are we compassionate enough to pause, even if for a moment and consider the implications of what we are saying and doing?  Even if we cannot or do not want to think about all the Autistic adults whom we do not know, can we just think about our own child?  Our children will be adults one day, do we really want them to feel as so many Autistic adults do?  Our children have feelings.

Ari is Autistic.

Michael is Autistic.

Both spoke.

How many listened?

My Autistic daughter, Emma – 2002

Emma - 2002

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From Anthropological Duty To Love Or Things Not to Say to Your Sister-ln-Law by Kis Brink aka Gareeth

Posted on November 29, 2012 by | 14 comments

What follows is a guest post by Kis Brink (for those who follow this blog you will know her as Gareeth).  When she sent it to me, I was so taken with its insights, the power of her writing that I asked her if I could post it here.  Kis gave me her permission for which I am honored.  It was this piece by Kis that inspired yesterday’s post:  Yes, These Are Things I Think About, What About You?

“Love is a very controversial word in the history of autism. Hurtful ideas that autism was caused by the failure of parents to love their children and equally as hurtful ideas that autistic people were incapable of loving were put forward. Many still believe them. For me love was something I learned over time and it is still a word I use cautiously and sparingly. I do not say, “I love you” unless I am sure. The word is never used to express a strong preference for something. I think love is like many other aspects of Asperger’s and autism where our take on it may be slightly different but this in no way renders our love less real. It took time for me to learn this though.

Society has rules about love. Who you should and shouldn’t love. Who you should love the most and so on. I like rules. I wrote about my adherence to them and creation about them in a previous article. As a child when the word love was mainly a word devoid of emotional content I had no problem meeting the norms for when to use it. It was only as my range of emotion increased that this became a problem. 

Anyone who knows me well knows that unless you are prepared for honest answers don’t ask me a question. I know some people with Autistic Spectrum Disorders who have learned to use socially useful lies of the kind society expects. While seeing how they may be handy in many situations not only is this against my rules, I even have theory about why this is wrong.  I tell those unfortunate people trying to help me by explaining that sometimes you need to tell small harmless lies that I do not believe there are degrees of truth. I expect that some autism experts would be quick to label my thinking on this topic black and white thinking, but it is the way I think. I tell people trying to convince me it is useful to lie that I don’t believe in white lies. To me there is truth and non-truth. This is the reason why I must think very clearly and sometimes long on what may seem like a “no-brainer” to most people.

“An everyday example of something I give more thought than others is the simple, “How are you?” that comes up everyday. I have even concluded from experience that most people’s automatic answer of fine is seldom the truth. This whole ritual seems illogical to me. If you care about the person you then have to ask more questions to determine what the truth is and if you don’t, well to put it bluntly, why ask in the first place? I know it is a normative behavior in our society.  How this applies to love is it is also taken for granted that you will love your family and any offspring they produce. This, I think for most members of my family, would be reasonable. The part that gets me is, it is assumed that the onset of this love will be immediate. I don’t do immediate love. It seems illogical to me and perhaps even untruthful although it may be the truth for those who say they do. I have questioned some people on the subject but have yet to get a clear enough sample for a definitive conclusion.

“This brings me to the subtitle of this piece: Things Not To Say to Your Sister-ln-Law. I’ll say right off the bat that I am lucky to have an extremely understanding and kind one or looking back I suspect I provided ample opportunities for our relationship to grind to a complete and permanent halt. Almost ten years ago now my first nephew was born. He was in fact the first member of the next generation for our branch of the family tree. I was happy for my brother and sister-in-law and glad to be a Fasta (Danish for father’s sister). Society however expects more immediately. It seemed no one else had any reluctance to express love for this new scrap of humanity. I live some distance from my brother but planned a trip to see this child for the summer.

“When my nephew was four months old I made the trip to see him. On the coast I had been spared much questioning beyond his height and the usual things like that. I had none of his other kin to compare myself to. I had a new role as a human and I was going to figure out what it entailed.  The first night of my visit after my brother went to bed, my sister-in-law and I were in the kitchen together. She asked what I thought of my nephew. It was a question I was still working on internally. I had these vague feelings that I could not quite name. I didn’t feel it would be correct to call these new feelings love at that point so I commented that I felt a sense of responsibility and commitment to the first member of the descending generation. This was a concept I had learned in anthropology that, to me, seemed to best sum up what was happening inside of me.

“Well it was quickly apparent that this was not quite the answer she had been expecting. I don’t remember if she was near tears or merely frustrated or both when she told me, “You know it’s okay just to love him.” This didn’t really make sense to me. I suspected I would grow to love him. I had hopes about what our relationship would be like. I knew people love their nephews and nieces and that his other aunts and uncles were able to say they did without batting an eye. I went to my room feeling frustrated and confused. I had been looking forward to being a Fasta and it seemed I was already messing up at it.

“People have called me a kid magnet. Children seem to gravitate towards me and enjoy being with me. I enjoy them as well. Despite the fact that my nephew was only 4 months old I did feel a certain sense of pride as I observed how well he kicked his legs around at the gym-toy babies have for kicking. I felt more feelings which I couldn’t identify when I looked at him sleeping, I even took my friends in to admire the marvel of him asleep. Maybe if I didn’t have autism I would have concluded that all this did in fact constitute sufficient grounds to say I loved him.

“Pictures taken at that time with he and I show a softening in my face that is positively maternal. Journal entries reflect a marvel for even his simplest behavior. I spent a lot of time walking with him in the neighborhood, thinking about all the things I would teach him as he grew older. I felt equipped to handle my anthropological duties towards him. It was only when others spoke about him that a fear in me would surface that I was an inferior brand of aunt. That no matter what I had to teach him and how fierce my desire was to protect him until I could repeatedly say how much I loved him in a conversation I would not make the grade.

“Fortunately time passed. My own range of breadth of feeling was on a steep learning curve at this same time. With each subsequent visit I moved closer to knowing I loved him. I started to be able to do some of the things I had imagined. He learned to speak and could express marvel over issues that I did not really expect a child so young to notice or have thoughts about. One day at the zoo we passed the exhibit that explains poaching. I thought that he was way to young to really understand how bad it was and tried to explain it in a way that would make sense to him, but when his eyes filled with tears and he asked why repeatedly I knew he had a special soul. A soul that would require more diligent protecting and nurturing than I had thought.

“There were other signs in those days. He had an obsession for whales. One Christmas everyone seemed to know that they had better get him some form of whale or not even bother with a present..  All seemed well in his world until he opened up a whale that had the wrong color tongue. Most of us were surprised that he knew so much about so many kinds of whales but his action regarding this whale was decisive. Into the garbage it went. No amount of explaining that it was wrong to throw out a present or offering to correct this error would convince him that something horrible had not happened. He asked the perennial question of childhood although his whys were a little more detailed. Why would someone even make a model of a whale and not get the tongue color right. Well the kid had a point on that one.

“One day a few months after his maternal grandfather had died my sister-in-law phoned to report what he had said at pre-school. It was the final and convincing evidence I needed to conclude that his soul was so special that not only did I love him with all my heart, I was prepared to do battle against any who might attempt to hurt this soul.  His pre-school had a no-violent-toys rule that was enforced quite strictly. A boy had ignored this rule and had a toy sword with him. My nephew told him, “Sword all you can while you are young, because you can’t take your sword to heaven because when you go to heaven you are flat.”

“Well the first two parts of what he said amazed me. The part about being flat also made sense in the context of his life. His grandfather had been cremated and scattered in the mountains. This is where the flat notion came from. I couldn’t have been prouder of him if he had discovered a cure for cancer. I thought and felt all the things that I had worried about not feeling for the first few years of his life. I rushed to get the exact quote and pinned it to my bulletin board in my most sacred spot – right above my computer. I listed his age and his title: Philosopher and Theologian.

“I have always identified with the song by Don McLean, “Starry Starry Night.” The line where it says, “the world was never meant for one as beautiful as you” hits home to me. When the world hurts mostly because it fails to understand people like myself and people with other differences I think of this and there is some comfort in the idea that it might be a question of being an excessively beautiful soul for the world in which we live. I knew immediately that my nephew too was one of these people and any last question about whether the feelings that had strengthened overtime qualified as love vanished.

“Yes it was a journey to this point. Not a love that I could say I felt with confidence on his birth but this does not make it a conditional love. I love everything about him. Many of my happiest hours are spent in his company. His excitement when I come, hearing him brag about me to his friends, his joy in the simple things in life would make any aunt proud. I know longer worry that my brand of “Fasta-ing” (pardon the creation of a word) is inferior. It is clear from his response that it is not.

“This Christmas he bought gifts for other people for the first time. About mine he kept saying it was small but precious. I had no doubt that it would be. Like myself he too seems to need symbols to represent people who are absent and his feelings for them. I was delighted to receive a piece of pyrite from him on Christmas morning. He has one similar to it. I told him that I would keep it by my bed the way his was so we would both always be reminded of our love for each other as we fell asleep and woke up. I hardly need reminding at this point though. Still that once mysterious feeling of love fills me completely when I look at this precious stone and contemplate the beautiful relationship I enjoy with my nephew.

“For those of you who may have relatives with high functioning forms of autism, when they give you not quite the answer you expect, I hope you take into account our unique perspective on the world. Particularly in the realm of emotion we may be embarking on a whole new voyage. I feel so lucky to have a sister-in-law who could forgive my atypical response, who brings it up now and then with humor, but especially for having a nephew with a soul so beautiful he brought me into new waters.”

Emma reading her favorite book – The Way I Feel – 2008

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Excitement, Impatience and Waiting

Posted on November 26, 2012 by | 64 comments

The day before Thanksgiving a facilitator, P. came over to work with Emma.  I met P. at the AutCom Conference in October and asked him for some guidance in helping Emma communicate more effectively through typing.  And while Emma is verbal, she can voice basic desires, has even begun to comment on things going on around her, she has not communicated more complex thoughts.  I know Emma is intelligent with a great many ideas and interests.  I want to help her express herself in whatever way proves most advantageous, whether that is verbally, through typing or some other, still unknown, way.   I want to help her be a full participant in this world so that she can have choices and options available to her.

P. has facilitated people for several decades, so I felt confident he would be able to help me learn how I can help Emma better and was excited to have him work directly with her while I watched.  We started with a number of apps, Emma had no trouble pointing, using her index finger to match words with images that she knows.  But in the past when it comes to typing an idea, Em will usually type, “yes” or “no” and then repeat the question, which is what she was taught to do with her most recent literacy program.  I am hoping Emma can be encouraged to move beyond that.

As P. worked with her, slowing her down so she couldn’t simply repeat what had been asked, holding her arm at the elbow, putting up some resistance to her desire to type quickly, reminding her to write what she was thinking, asking if that’s what she meant, I felt tremendous hope.  P. asked Em to bring a book she liked.  She brought him a collection of fairy tales and plopped the large book on the table in front of him.  Em chose to discuss Goldilocks and the three bears.  Most of what was typed were fairly simple ideas about the bears and Goldilocks and the havoc Goldilocks causes (much to Em’s delight.)  But then P. asked Em what she would do if she went into her own bedroom and found baby bear in her bed, Em typed, “I would be scared and I would watch his mother.”

I read that sentence several times.  How can I describe the feelings that came with reading it?  How can I express the surge of hope I felt?  How can I possibly describe the feeling of euphoria?  This sentence, this idea was beyond what I have come to expect.  It suggested a whole other level of thinking, a thought process far beyond anything she has been able to express before.  It was a terrific idea, one I have discussed with both children during the summer months when we visit my mother in Colorado where we often see bears.  I have warned the children that if they encounter a bear, especially a mother with her cubs, to not get between them, to keep their distance, to keep their eye on the mother and to make loud noises.

But Emma wasn’t finished.  She then typed, “By the way, this is a very sad story.”  I was astonished.  I had a million questions.  Emma has never spoken this way.  Ever.  “By the way” is something both Richard and I say, both in jest as well as seriously.   Em has never uttered these words, let alone typed them.  And why does she think it’s a “sad story”?  What strikes her as sad?  Which part or does she think the whole thing is sad?  It is sad, I thought and then I Immediately went to,  I have to become trained in facilitated communication.  I have to find a way to communicate like this with Emma.  As I am not able to become trained in facilitated communication in the next 24 hours, I made an appointment to Skype with P. in another week, which feels like an eternity, and will try to do whatever I can to continue to learn so that I am better able to help my daughter become an independent communicator.

Between now and that Skype call, I am doing my best to manage my impatience, my excitement, my hopes and dreams and the reality that my daughter has a great deal to say and boy do I want to hear it all!

Em & P.

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A Story About Our Black Cat

Posted on November 21, 2012 by | 18 comments

About nine months ago I read this post from E.  click ‘here‘.  It’s about her cat M. (I just loved she chose to keep him anonymous!)  When I found E.’s blog The Third Glance I went to the beginning and read every single post she’d written.  She was fairly new to the blogging world and so it was relatively easy to read all her posts in a few days.  I sent Richard the link to My Cat is My Hero because we have a black cat also with a name starting with the letter M.  Also from a rescue shelter and also a pet that we absolutely adore.  Unlike E.’s cat however, Merlin announces his presence to anyone who is capable of bending down to pet him.  He demands attention and shamelessly pursues anyone who seems remotely willing to give him his due.

Prior to Merlin, Richard was a self-proclaimed “dog man”.  He explained to me patiently that he did not particularly like cats, that given his preference he would surround himself with dogs.  In fact, Richard, when I brought up the idea of getting a cat after the children kept asking for one, said to me, “If you care about me and our marriage, you will not bring this up again.”  To which I replied, “I do care about you and our marriage.”  And the subject was dropped.  (By me.)  However that did not hold for Nic and Emma.  They brought the subject up repeatedly (and I did nothing to discourage them, though I will deny this to Richard, even after he reads this here, I’m still going to deny it.)  And finally when Emma said, in a particularly adorable and sad voice, “Bring kitty home?” while at our weekly trip to the pet store, Richard said, “What do you think about getting a cat?”  To which I casually replied, “Oh, good idea.” Eye roll and the slightest of smirks.

When we arrived at the pet store we explained that the cat we were looking for would need to be comfortable with children and loud music.  One of the employees brought over a rust colored cat whom he assured us loved being held and was a “lap cat”.  He was adorable, but Richard looking slightly ill, leaned over as I held the kitty in my lap and whispered, “We are not getting that cat, he looks like liverwurst.”  “He does not Dad!” Nic cried.  But Richard stood firm.  We continued to view the dozens of cats and then Nic said, “Mom.  Look at this one!” And there he was, black as chimney soot, green eyes calmly staring at us, he even swaggered as he made his way over to us.   I had been reading Temple Grandin’s book, Animals Make Us Human  and had made a mental note about her suggestion that black, male cats were often calmer and she advised gently putting the cat on his back with a light hand on his belly to see what he would do.  If he bit or clawed or panicked, he was probably not the right cat for a family with children, but if he was calm, he was, most likely ideal.  I did as suggested and Merlin purred, relishing in the attention, then righted himself when he’d had enough and wandered over to Emma, who began to pet him.

Both Nic and Emma expressed their approval and after the lengthy intake process where we had to present referrals and swear to uphold a lengthy list of requirements such as promising not to declaw him, take him regularly to the vet, etc we were allowed to bring Merlin home.  Though there was an anguished moment when Nic asked Richard, “Dad, aren’t you so excited?” And Richard said loudly, “Yeah, right Nic.  I am NOT excited to have this animal come home with us.” Meanwhile the manager of the shelter was standing behind Richard looking none too pleased.  It was one of those moments when I thought our plans to adopt were dashed and Merlin would not be released to us after all.  But even with Richard’s ill-timed, less than enthusiastic response, within hours Merlin was home and strutting about as if he owned the place and by the second day was scaling the curtains, climbing to the highest places he could find, walking like a tightrope walker along the curtain rods and then leaping down on top of us, much to our terror.

Despite all of this, or perhaps because of it, Richard began to soften.  Merlin being the brilliant cat that he is, immediately began following Richard around as though he were a faithful hound and NOT a cat at all.  Within a week Richard was speaking to him and by the end of that first month it was clear Richard had succumbed to Merlin’s charms.  In addition to all of this there were sightings by Nic of him using the toilet to pee and it was also around this time that Merlin taught us to play fetch with him, which sealed the deal for Richard who now cannot be away from Merlin for more than a few hours before mentioning him.

Please enjoy this video, shot by the ever adoring, Richard just last week while I go brine our turkey.

Merlin

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Mistakes Have Been Made and Random Acts of Kindness

Posted on November 20, 2012 by | 33 comments

A few months ago someone typed into a search engine – “how can a 56 year old make a mistake” – and they were led to my blog.  Which is either a great relief or pretty horrifying, I haven’t decided.  I read those words and my first thought was, Why are they being led to my blog?  I am NOT 56 years old!  But when I am, I will undoubtedly still be making mistakes.  Do any of us stop making mistakes?  Isn’t that part of being in the world, being human and being alive?  To err is human and all of that?  None of us get out of here doing this perfectly.  So yeah, I’m okay with the fact that someone was led to my blog who may have been incredulous that a 56-year-old or even a 52-year-old (my actual age) could make a mistake or, as is my case, many, many mistakes.  I have, I do, no doubt I will continue to make mistakes.  But the wisdom of years is that I don’t need to pretend I’m doing everything perfectly, I don’t need to hide from my mistakes.  I can look at them, see them for what they are and hopefully, move on.

Which brings me to Emma.  I would really like to not repeat a great number of the mistakes I’ve made when it comes to my daughter.  Some I can’t even call “mistakes” because I kept repeating them and at a certain point repeated actions get pushed out of the “mistakes” category and into the “bad decision” category.  (It’s kind of like when someone says they’re going to go take a nap and then disappear for four hours.  That’s not a “nap”, that’s going back to sleep!  It doesn’t matter that it’s in the middle of the day.)   So yeah, I’ve made plenty of decisions I really wish I hadn’t, decisions that affected my daughter.  Decisions I don’t feel happy about or proud of.  There are others I am even ashamed of and feel tremendous guilt over.  It would be dishonest of me to say otherwise.

But here’s the thing, beating myself up over those things doesn’t make me behave better, it doesn’t make me a better parent.  I used to think that if I just punished myself enough I’d stop doing whatever it was, but that never happened.  Punishment just led to more feelings of guilt and shame.  Punishment meant I felt worse about myself not better.  Punishment and self-criticism make me exhausted and keep me firmly rooted in my ‘self’.  There are two things I know to do when I’m feeling this way (but still forget to do them, so this post is equivalent to putting a string around my finger.)  I need to do both these things at the same time, or within close proximity to each other.  I need to be specific about what I’ve done that I feel is unforgivable.  I need to list these things and then I need to tell on myself. I have to be careful with this part.  I have to find people who I’m pretty sure will not condemn me, but instead will be kind and loving.  I need to admit what I’ve done and then I need to reach out to others and “be of service”.

The concept of being of service has saved my life.  I don’t mean to suggest that I think of myself as a martyr or Mother Teresa or Gandhi.  I mean that it is crucial for me to reach out to others and not just when I’m in self punishing mode, but every day.   Random acts of kindness.  I had to learn how to do this years ago.  It was something I had to practice, because it didn’t come naturally to me, particularly when I was in self punishment mode.

I will never forget when both the children were young.  I had Nic in a backpack and Em was a baby in a sling.  I was waiting for the light to turn green on our way home from a day spent in the park.  Both kids were tired, I was tired and feeling grumpy.  I was obsessing over how I’d spoken crossly to Nic and was exasperated with Emma because she wouldn’t nap.  I began beating myself up.  I wasn’t a good mother, I should be more patient, I shouldn’t be so easily annoyed.  And as I was ruminating about all of this I noticed there was a blind man waiting on the corner with us.  I had been practicing random acts of kindness for several years by then so without thinking I said, “Would you like help crossing the street?” and the elderly man said he would.  I offered him my arm, he held it right where my elbow was bent and the four of us crossed the street.  As we were crossing Nic began to coo and Emma was making gurgling noises, the man turned his head and said, “sounds like you’ve got your hands full!”  So I told him about how I was carrying my baby daughter in a sling and my son loved being in a Kelty backpack and the man just thought this was hilarious.  We ended up walking with him for several blocks beyond our home and when he was close to where he lived we parted.  I no longer felt grumpy or tired, I felt exuberant, in love with the world and all its inhabitants.  I bet that man doesn’t remember us, but I’ve never forgotten him.  He gave me a gift that day, something I hadn’t been able to give myself and it was beautiful.

He gave me kindness and forgiveness.

Emma & Nic – April 2002

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“Nearly Every Moment…”

Posted on November 14, 2012 by | 22 comments

My friend Paula Moerland allowed me to post this.

“Nearly every moment of my existence
Has been filled with the necessity of caring for this body
This emotional body, so distraught
This mental body, so busy
This physical body, so out of balance
Always

I am not selfish

I am exhausted”

When I first read this I had to close my eyes and sit very still.  And as I sat, I remembered something my father said to me so many years ago when he was in a wheel chair. He told me constant pain was exhausting.  I was surprised by this.  I had never before considered what it must be like to be in constant pain.

None of us are getting out of here alive and while we live our lives there’s going to be pain, but some people have to endure terrible suffering.  Too awful for most of us to fully understand or even know.  All of us know someone who has dealt with inordinate pain and yet somehow managed to find a way to transcend it, or used it to create something magnificent.  Those people are guides.  I hear their stories and am in awe of their ability to cope with physical and mental abuse often at the hands of those they should have been able to trust, the very people who should have been there to comfort them, to care for them , but instead turned on them.  Yet despite those wounds they are trying to transcend it, they have the desire to rise above it, not give into it.  There is tremendous power in that.  We humans have an astonishing ability to not only endure, but create astonishing beauty.

Thank you Paula for sending me your beautiful words.

New York City in October

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Bloggers, Writers, Autism and a Huge Amount of Hope

Posted on November 13, 2012 by | 40 comments

When Emma was diagnosed with PDD-NOS (pervasive developmental disorder – not otherwise specified) in 2004, I was lulled into believing it was a temporary condition, nothing that a few years of therapy wouldn’t resolve.  I saw it as a kind of throw away diagnosis, not exactly full-blown autism, more like a mild version of something that resembled Autism, but wasn’t.  Kind of like a bad cold, not exactly a bacterial infection requiring antibiotics, but troublesome never-the-less and we’d have to ride it out.  Besides, I reasoned, just because many of Em’s behavior looked autistic-like, seemed autistic-ish, she probably wasn’t autistic because, well, no one really understood what autism was and so how could she be labeled something that no one understood or really knew what it even meant?  Or so my thinking went.  During this initial period I kept my eye out for any Autistic adults I could find, just in case, you know, she really was autistic, I wanted to know what we might expect.  I found none and concluded that since I couldn’t find any, there must not actually BE any to find.

Still, just on the off-chance I was somehow wrong, I kept looking.  Every now and again I’d find someone, read everything they wrote or said and conclude that my daughter wasn’t really like them or wasn’t like them enough to give me much hope that they were good examples of what she might be like later in life.   (In retrospect, since Em wants to be a singer, I should have been looking for performers who are autistic, but even so, would, most likely, have come to the same conclusion.) By the way, I have never met a neurotypical adult who seemed like an adult version of my neurotypical son, but this thought didn’t occur to me for a great many years.  Despite all of this, my search continued.

In 2005 Em’s PDD-NOS diagnosis officially became “autism”.  As time went on and my thinking continued to change, Emma remained Emma with all her “Autistic-like behaviors” very much in place and I continued to grapple with what this meant.  I wasn’t one of those parents who understood that regardless of her neurology, she was who she was and it was all good.  I bought into the autism is like cancer idea, and therapy was chemo.  (This idea was very popular back in 2004, though I hope it has waned.)  It took me awhile to question this thinking and it took me even longer to see how these beliefs made any “therapeutic” program somewhat reasonable, because, after all, nobody signs up to have chemo and talks about what an enjoyable experience it is.  The idea that Autism is NOT cancer, that this thinking in and of itself leads us down a very dark and dangerous path was something I didn’t come to until much later.

Now fast forward to this morning.  This morning I read a terrific post, The Princess, Her Socks and Her Late Pass on a wonderful blog I’ve begun reading regularly by Aspie Writer called, Twirling Naked in the Street and No-one Noticed, (love that title) which she describes as “A blogged book: Growing up with undiagnosed autism”.  Reading her post about how she hated wearing socks, (so does Emma) how the fabric bunched and the seam on her toes hurt and how the socks had tiny rocks in them that no one else could see or find, kept reminding me of Em.  Aspie Writer recounts how she was always late to class and keeps saying over and over, “I have to see Mr. Hiler for my late pass.”  It is a wonderfully written description about a baffling behavior.  She does such a terrific job describing her actions and words that they made total sense to me.  Not only was I able to identify with her thinking, it gave me a little glimpse into some of Em’s seemingly baffling actions or repeated sentences.

And I was reminded (again) of why reading blogs by Autistic people is of such vital importance to me.  It’s not because I think to myself, oh Emma is going to become this person when she’s an adult.  I don’t assume that because Aspie Writer is married, a mom of 3 and a wonderful writer this will be Emma’s future.  I haven’t met a single adult, autistic or otherwise who seems to be just like either of my children.  How could I?  There wasn’t an adult version of me when I was a child and I’m certainly not an adult version of anyone else’s child.  It’s kind of a ridiculous idea when you stop to think about it.  And yet, that’s what I wanted for all those years when I was searching.  I wanted to find someone who seemed just like Emma was.  I wanted this desperately because I was so fearful of her future.  Yet, all those autistic adults who are not exactly like my daughter  are the very reason I am no longer fearful and why I have so much hope.

Blogs, both the writing of this one and finding those written by Autistics have changed my life.  Blogs are a slice of life, immediate and interactive.  I can read a post and “like” it, comment on it, even though I may or may not get a response from the writer.  I can then tweet the post out, share it on Facebook and engage in a dialogue with the writer if they care to respond.  The immediacy of blogs is compelling, engaging and makes the reader feel more apart of than when reading a book.  Books are wonderful too, but they’re different.  They do not have the interactive element to them that makes blogging so wonderful.  Blogging is very much about “us”.  We, whether as a reader or writer, have the opportunity to become part of the process, a part of “them”.  Another aspect of blogging is – anyone can blog.  You don’t need an agent, you don’t need to even write “well” (though there are many wonderful writers who also blog), you just need to want to write.  So you have a great many people who may never have bothered to look for an agent or publisher, who are writing and because it’s a casual writing form, you also find some amazingly beautiful blogs written with honesty, unedited, raw and complex.

To all the Autistic people who are sharing your stories, your words, your lives, whether by commenting or by having a blog of your own or both, here’s a very loud and heartfelt thank you!  You are making a difference.  You have changed my life.  How does “thank you” even cover the enormity of that?  It doesn’t.

Emma – 2003

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Fog

Posted on November 12, 2012 by | 16 comments

When I climbed the stairs out of the subway this morning and began heading west to my studio, fog completely obscured the Manhattan skyline.  I’m no stranger to fog, whether metaphorical or actual.  In northern California where I grew up, fog was a constant.  Each morning the fog would cover the mountains near our house, but by 11:00AM it would have lifted.  I feel a certain nostalgia for fog.  As I walked the four blocks to my studio this morning I thought about how, when we can’t see something we often assume it isn’t there or what we assume is there, actually isn’t.   Had I not known fog was covering an entire thriving metropolis called Manhattan, I would not have been able to imagine it.  That’s the beauty of fog, it usually lifts and when it does, it often reveals surprising things.

This has been my experience with my daughter and autism.  Autism was, for a great many years, like the fog, obscuring the child within.  I kept trying to lift the fog, thinking that if I could do so, I would “find” my daughter.  Then I began to realize the “fog” was my thinking.  The way I thought about autism was obscuring my daughter.   My daughter has always been there, just like Manhattan is and when the fog lifts I can see her in all her magnificent glory.

Emma – 2004

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Posted in Autism, New York City, Parenting

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An Ode To My Daughter

Posted on November 7, 2012 by | 39 comments

Dearest One,

When you were first born I had an idea about you, it was an idea I have come back to, all these years later, it was an idea that was more right than wrong.  You were very much your own person right from that first moment you drew breath.  I remember marveling at your strength and independence.  I knew almost nothing about autism.  I hadn’t taken the idea of independence and remolded it as “autism” yet, only to rework that idea back to its original concept later.  I saw you and appreciated you for who I saw you to be.  Defiant, independent, strong, determined and silly.  Even as a baby you loved to laugh and appreciated silliness in all its various forms.  You loved playing peek-a-boo and being thrown in the air.  Those first eighteen months, before I knew words like “vestibular”, “proprioceptive”, “stimming”, “perseverative”, “echolalia” and all the other words that threatened to push you from center stage, making you less you and more an example of a diagnosis weighted with other’s learned opinions, I was in awe of you.

Words have power, but words can confuse, they blinded me for many years, I became caught up in what they meant or what others thought they meant and as a result was less able to appreciate you.  I used to wield those words as though they were weapons banishing what was, into something else, something undefinable, something “other”, something I wanted to find a way to control or remove.

As a baby before I knew those other words, you were in a state of either bliss or agitation.  I use to watch you with wonder and admiration.  You were distressed by the lights and the air seemed to hurt you, as though it scraped against your skin.  You liked being swaddled tightly in one of the soft baby blankets I had bought for your arrival.  You slept almost constantly those first two weeks.  Then your deep slumber was interrupted by internal discomforts I could not guess or see.  You greeted these intrusions with indignation, howls of distress and I felt a helplessness I had not known could exist.  A helplessness borne from not knowing; watching, but not able to intervene, hearing, but unable to understand.  I tried to comfort you, but my understanding of what comfort meant was not the same as yours and so your teaching began.  You have been so very patient with me, dearest one.  You have never given up on me.

You have painstakingly tried to communicate in a language that does not come naturally to you.  You have met me more than half way.  You have tried over and over to help me understand and you’ve never stopped.  It has taken me a long time to learn some very basic things about you, things you’ve been telling me ever since you were born, but that I couldn’t understand.  Things I still forget, but  I’m getting better at listening to you and understanding that words are not the only way a human being communicates.  I am getting better at hearing you.  I have learned to listen to your behavior as though it were a conversation, because it is how you reach out, it is the way you connect.  I am learning to lean into you, to not try to do a word-for-word interpretation of your verbal utterances, but to try to feel the meaning of what you are doing or saying.

You are Autistic.  Do not let other’s interpretation of that word define you, rather help others understand that you define it.  Make your mark in this world by continuing to believe in yourself.  Continue to stand up for yourself.  Advocate. Let your voice be heard.  “Actions speak louder than words,” people say, but they don’t seem to apply that to you and others who cannot and do not rely solely on language.  Those people need to be taught, because actions DO speak louder than words if we can learn to listen to them.

You, my beautiful daughter, are kind and good and honest and talented and funny and caring and sensitive and yes, Autistic.  Be proud of your neurology, but do not allow others to limit you because of it.  Do not allow someone’s idea of what that means to encroach on who you are or how you perceive yourself.  You are Autistic and you are my daughter.  It could be argued that both come with a great deal of baggage, but both also come with many wonders and advantages.  Concentrate on the positives, lean into them, and make your way.  Reach out to me, grab my hand, together we are stronger than we are alone.

I am so proud of you.

Richard, Em & Me – 2010

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