Tag Archives: bulimia

Emma Interviews

Posted on July 30, 2014 by | 12 comments

Emma has been interviewing various family members.  So I wasn’t surprised when she wrote that she wanted to conduct another interview.  Except this time she wrote that she wanted to interview me.  This is part one of that interview…

Emma:  What sparks your imagination more? Words? Pictures? Music?

It depends on the situation.  I have been inspired and moved by all three at various times and can think of examples of each sparking my imagination.  If I had to put them in order of most moving and inspiring, I would have to say visual, whether experiential as in scenic or static pictures, painted, photographs, sculpture, visual art.  But even as I say this I’m thinking of music that has brought me to tears, and literature and poetry that completely captivated, even non fiction writing, particularly memoirs have completely enthralled me.  Each has inspired and sparked my imagination.  I don’t know that I can choose!

Emma:  Who do you wish you could have known and why?

My grandfather, your Great-Grandfather.  He is the one your granma, my mother speaks so highly of.   It would have been nice to have had the experience of knowing him.  He was also an extremely ambitious, smart and I’ve been told, fascinating man who lived a complicated and unusual life.  I would have liked the opportunity to have interviewed him the way you are interviewing me.

Emma:  What taught you more about life – notable happiness or terrible suffering?

In a strange way, both as they are both great teachers and I’ve experienced large doses of each.  I only wish I was a faster learner so the suffering didn’t have to go on for as long as it did.

Emma:  When were you decidedly happiest and when were you easily the most unhappy?

The most difficult time in my life was the years when I was bulimic.  I felt as though I was watching life pass me by as I remained stuck in my obsessive-compulsive addictive behaviors.  It was a terrible time of feeling I was betraying myself on a daily basis and couldn’t stop, though I wanted to more than anything. Sadly that period lasted for about 22 years.  That’s an awfully long time to be so unhappy.

This period of my life is by far the happiest.  I have learned and experience daily the power of gratitude, friendship, humility, family and the gift of giving back.  I am so grateful for the many gifts I’ve been given – Daddy, N. and you, extended family and friendship.  I have so much love in my life.  I am extremely fortunate.  Gratitude encourages misery to withdraw.  People say it’s harder to talk about unhappiness, but I have found the opposite to be true.  Misery came easily to me. Happiness I’ve had to fight for and once I caught slivers of it, I wasn’t willing to let it go.

Emma chose this photo of me to accompany her interview

Emma chose this photo of me to accompany her interview (I figure since I chose photos of Emma throughout her childhood, it is only fair that she now choose the photographs posted on this blog.)

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Posted in Happiness, Interview, Parenting

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“Picky Eater”

Posted on April 23, 2014 by | 44 comments

“Picky eater.”  This is how Emma has described herself and gave me permission to quote.  Food and eating in relationship to my daughter are topics I have (in the last year and a half) avoided on this blog  for a variety of reasons, but the biggest being, because I spent twenty-two years of my life in the throes of an eating disorder documented ‘here‘ and ‘here‘ and so have very conflicted opinions about all of this.  I have no problem discussing my own issues regarding food, but I don’t have that leeway when talking about my daughter’s relationship to food.  It’s not my story to tell, it’s hers.

So this post will not be about her interactions with food as much as it will concentrate on my own as the parent of a “picky eater.”  Despite my better instincts, I became way too involved in my daughter’s food, what she ate, what she didn’t.  I made the mistake of believing there was a link between her inability to speak and what she was or wasn’t eating and that concern overrode my gut feeling that I needed to stay out of it…  twice.  As a result, this happened.  The first time I “managed” her food intake was when she was just two years old, despite all the medical tests showing she had no intolerances or allergies to anything.  The second time was far worse and more traumatic and it was because of those six weeks, when she stopped eating, lost a tremendous amount of weight, that I realized I had to stop trying to control what she did or didn’t eat.  Please remember I am writing this from the perspective of someone who has huge personal issues with food.  This is important.

I have heard from a number of people who have found from various tests done by their doctors or through their own experimentation that they feel better if they stay away from particular foods, others have been diagnosed as celiac or have specific food intolerances and allergies that when avoided has changed their lives significantly.  This is true for all people and not just a specific neurology, though it may prove to be more prevalent in Autistic neurology, or it may be that Autistic neurology makes some experience the discomfort they feel more intensely. Either way, it is absolutely a fact that some people are allergic or have an intolerance to some foods.

When I first put my daughter on a gluten-free/ casein free diet I was filled with trepidation because of my history as both bulimic and anorexic.  I worried about the unforeseen consequences of controlling her food choices, particularly as my eating disorder had nearly fatal consequences.  When I gave birth to my daughter I was so relieved when she ate just about anything offered.  As time went on and she began to narrow what she would and wouldn’t eat I became concerned, but wary of becoming too involved.  I was hyper aware of offering healthy foods to my children, while not becoming overly controlling.  So far so good.  And then Emma was diagnosed with autism and in my research I read about the GF/CF diet.  In the literature I read there were spectacular claims of “recovery” from autism and “losing their diagnosis.”  This was in 2004.  I was in the midst of my find-anything-that-will-cure-her- thinking.  I don’t know if that diet is pushed on parents now the way it was then.  But at the time it seemed many parents were implementing it, some with noticeable positive changes, but most were not, still, it seemed worth a try.

Like everything to do with autism, there are opinions, lots of opinions, but little real evidence that a diet was having the same massive effect on all children diagnosed with autism as it was on a few.  So when the diet did nothing, and despite the battery of tests showing no intolerance of any kind, in a moment of desperation I implemented an even more draconian version of this diet in 2011 as advised by a naturopath I took her to.  It was this final attempt that caused long-term and far-reaching damage.  It eroded her trust and it caused her a great deal of unnecessary pain and trauma.  It is this time period that Emma still refers to with great anxiety today.  As someone who almost died because of my eating disorder it is tough to reconcile the fact that I have caused my daughter such suffering.

I bring all of this up because over the weekend, Emma said she was willing to “taste a carrot.”  This was huge.  HUGE, as Emma has not willingly eaten a vegetable of any kind since 2005.  I have consoled myself over the years by reminding myself that there are populations throughout the world who subsist on an extremely limited diet.  There are indigenous people in Northwestern Alaska who live on seal and walrus blubber and little else, but whose health is actually better than their southern neighbors.  Various people over the years, particularly OT’s and speech therapists have tried to convince me to restrict Emma’s diet, but I won’t do it. Instead we discuss nutrition.  We talk about food choices.  I do my best to model good eating habits.  We talk about vitamin supplements and I offer healthy choices.

When I asked Emma, “So what did you think about that carrot you just tried?”  Emma wrote, “I think it’s sweeter than I expected.  So not as bad as I had anticipated.”

“Do you think you will try it again?” I asked.

“Yes, I will taste it and thank you for your suggestion,” Emma ever so politely wrote.

November, 2011

Having lost more than 10 pounds – November, 2011

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Posted in Autism, diets, Gastro-Intestinal Issues

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A Confession

Posted on January 18, 2013 by | 37 comments

In my teens, through my twenties and half way into my thirties  I used food the way a junkie uses heroin, only my “highs” didn’t last as long.  As a teenager I realized there was nothing like eating large quantities of food to quell my discomfort, boredom, pain, happiness, sadness or anger.  I found I could “cancel” out my overeating by purging.  Vomiting quickly became as much a compulsion as eating was.  At a certain point I had to do both, and though I didn’t think of it as one and the same, both provided the relief I sought from the pain I was in.  Very quickly I went from making a decision to eat, to feeling it was no longer a choice, but something I had to do.  The pain felt so unbearable, the food and vomiting so wonderfully seductive and numbing, I began to feel I would die if I didn’t give in to my compulsions.

By the time I was seventeen I knew I had a problem.  I had tried, on numerous occasions, to cut back or stop, but I could not.  By the time I was eighteen it was clear to me that I was an addict, but few agreed.  Being addicted to food is not a popular or commonly accepted idea.  Being addicted to food is not considered, by many, to be a true or real addiction.  Instead people said, “Just go on a diet.” “Just stop eating when you’re full.”  “You’re not an addict, you just like food.”  “You can’t be addicted to food, you just have a problem with will power and self-control.”  “Why don’t you talk about it, maybe that will help you understand your real problems.”  “Fast for a few days and cleanse your body.”  “Here’s a hypnotist I know, he was very helpful when I decided to stop smoking.”  “You need to get a hobby, take your mind off eating and food.”

So for years I followed everyone’s advice.  I went to psychiatrists, psychologists, behavioral therapists, group therapy, eating disorder specialists, body workers.  I tried diets, fasting, cutting out particular food groups, visualization, aromatherapy, and read every book I could find dealing with weight loss, compulsive eating and dieting.  I kept journals and wrote about my feelings, I weighed myself and measured all my body parts.  I kept detailed records of weight gain and loss with the corresponding inches gained or lost.  I viewed myself with a critical eye, carefully evaluating the “problem areas” and resolved to work on those with trips to the gym and exercises targeting those troublesome parts of my body that didn’t measure up.  And as I did all of this I kept telling myself that there was obviously something fundamentally wrong with me or else I would be able to eat like everyone else.

It never once occurred to me that my self loathing and self-criticism did little except make me want to eat more and only served to increase my anxiety and self-hatred, which in turn increased my compulsiveness.  Over the years as I continued to try, and failed at various “treatments” I became more and more depressed, until eventually I felt the only real option left was suicide.  And as I contemplated this, as I seriously began to consider this as a viable option I was told to go to a group of people who were grappling with the same issues I was – food and compulsive overeating.  It was there in those rooms filled with people just like myself that I felt, for the first time, I belonged among the human race.  Finally I had found my people.  Up until that point I felt like an interloper, a perpetual outsider, the one who couldn’t figure out how to live with the same kind of simplicity and ease everyone else seemed able to do.

This group of people taught me how to be in the world.  I learned that my actions, the things I said and did, affected how I felt about myself.  These other addicts helped me navigate life one day at a time, reminding me that I was not alone and that others had come before me.  They held out their hands, offered me  support and guidance and encouraged me.  They taught me about honesty and taking “the next right action” and the importance of being present.  I came to understand that my life was of value and that I in turn had something to offer others.  As I learned to behave in a kinder more tolerant way toward others, I became kinder and more tolerant of myself.  As I became more tolerant of myself I felt more comfortable in my own skin and began to accept myself for exactly who I was.  As I did this day by day I found my compulsions lessen.  I found I could concentrate on other things.  I realized I had a great many interests and was able to begin pursuing them.  I found I had the energy and the desire to help others who were like I once was.

Now, close to twenty years since those early, painful days when I first discovered I was not alone, my life has completely changed.  That person I was all those years ago is not who I am now.  But I still remain an addict.  It is who and what I am.  It is important for me to remember that, because it is when I forget that I once again find myself back in the food, obsessing about my body and how much I weigh, wondering how many calories are in any given food and where and what I can or cannot eat.  It is so easy to go there and when I do, I lose out on my life.  As an active addict everything and everyone else takes a back seat to my addiction.  Active addicts are not fun to be around.  They have little to offer.  But those of us who have come out the other side, who have learned how to be in this world without picking up our substance of choice, we have so much to offer and give.  Some of the finest, most generous and trustworthy people I know are addicts with years of recovery under their belts.

I am an addict.  I am a mom.  I am a wife.  I am a friend.  I am a human being.

1988 in New York City

1988

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Posted in Addiction, forgiveness, Groups, Parenting

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Group Dynamics – This Was NOT the Post I Intended to Write…

Posted on January 10, 2013 by | 34 comments

I don’t like groups.  I never have.  There’s something about group dynamics that I find more than a little frightening.  Too often groups develop an entity all their own and while it may beautifully reflect many individuals within the group, it never reflects all.  The loudest voices are often perceived as having the “best” or the “right” ideas and others who are not as loud or are just in the minority fall into line or if they don’t, are seen as threatening renegades and nonconformists.  Aspie Kid wrote an incredible post last week about something related to this, The Power of Suggestion on his terrific blog Aspie Kid: Perspectives From the Autism Spectrum.  While his post is not about group dynamics per se, it is about how easy it is to convince people of things when they perceive the source to be trustworthy or “in the know”.

Studies have been done regarding the power of suggestion and how groups can influence individuals to do and think just about anything.  Below is the famous Asch Experiment done in the 1950s; it is truly incredible, as well as troubling.  It’s important to note, this experiment has been done repeatedly, but always with neurotypicals.  I would be interested to see the results if it were done with Autistics.

More recently Kazuo Mori and Miho Arai redid the Asch Experiment but had each participant wear glasses that showed them the same image, yet each saw different things, thereby making them believe the answer they were giving was correct, unlike the original experiment where all but one participant was told to choose the same answer regardless of what they actually believed.  They also used both men and women and found that the results when using women replicated Asch’s, but did not with the men.  (That women were more likely to cave and agree with the group or majority view despite what they “knew” to be true is a whole other post!)  You can read more about that experiment ‘here‘.  Further studies showed that when the participants were acquainted with one another they were even more likely to go along with the majority than when they were strangers to each other.

Seventh grade:  I was the new girl at a new school with new kids and teachers in a new home.  I was extremely unhappy and had been for many years, though I had little self-awareness.  It was just before Easter.  There were only a few months left before summer vacation, but I couldn’t imagine how I would get through the year.  In my desire to “fit in” I told a great many lies.  I had been doing this for years.  The lies were so easy and seductive.  Words that were understood by the other kids in this small junior high school to have been fabricated.  I was shunned and ate my lunch alone by the chain link fence bordering the oval track where I excelled at running the mile, mostly because almost no one else was willing to run the mile, they were much happier running the 50 yard dash.  I found a shred of solace in running, and eating my lunch alone next to the oval track made me feel safe.  I cannot remember much of that year except that despite this I was surprised to be invited to a slumber party by one of the “in” girls.  Everyone was friendly at first and I let my guard down.  Without even meaning to I told more lies, all the while ignoring the tug in my stomach that I shouldn’t.  Lies were so comforting to me.  I preferred the lies to the truth, because I could no longer sort out what the “truth” was.   

The following morning all the girls gathered in a group and told me they wanted to talk to me.  I knew what was coming.  I froze and sat staring out the large window of the large house nestled on a hill.  I heard their voices, angry, accusatory, hurt, but it was just noise swirling around me as I gazed out that window at the fog as it slowly, slowly receded over those Northern California foothills, burnt away by the morning sun.  Each girl repeated a lie I’d told.  Each girl repeated the things I said, often behind the other’s back in my attempt to be liked, to fit in, to be like one of them.   My mind went numb.  I left my body.  Much later, I do not know how much actual time had passed as time stopped, my mother came to pick me up.  “How was the slumber party?” my mother asked.

“Fine,” I answered as the car sped away from those girls who I was clearly not like toward our home where I would at last be safe. 

In the refuge of my room later that day I felt something click deep inside.  I understood that I would never be safe.  There was nothing and nowhere I could go.  That day was the beginning of a long, painful slide into self-injury, bulimia, anorexia and addiction to quell the beast within.  There is nothing like addiction to shut the world out.  Addiction is the ultimate “lie”.  It is a living lie and betrayal of self.  I didn’t have the means to see that my actions had brought me hardship.  I did not understand yet that there was another way of being.  I didn’t have the necessary tools to guide me because I had long ago forfeited my self, there was no me to find or return to.  There was no “I”.  Addiction helped me forget the truth.

It is impossible to live in this world and not be part of a group. (Unless you are a hermit.)  We humans tend to crave companionship, whatever our neurology.  Yet we have a terrible time actually getting along peacefully with one another.  It took me thirty years to figure out a way to be with myself that I didn’t hate.  Slowly as I practice honesty, being kind and of service to others I was able to very slowly, very tentatively become a part of.  Groups can be wonderful.  Together we can accomplish and do what no individual can. I am a part of a number of groups that I have come to rely on.  But when groups become hotbeds of strife and gossip, where people forget that the groups principles are more important than any one individual’s grievance,  I know I must leave them.   I spent far too many years betraying my “self”.  I know how this ends.  And it isn’t pretty.

The Freedom Tower, taken this morning.   It represents the full scale of what we humans are capable of – to destroy or create… it’s up to each of us to decide.

Freedom Tower

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Posted in controversy, Group Dynamics, Groups

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Another Topic of Controversy… No I am NOT Trying to Find Them, They Are Everywhere

Posted on October 15, 2012 by | 88 comments

Ever feel compelled to write about something that you’d just as soon not talk about?  I’m feeling that way about today’s post for a whole host of reasons which I’ll discuss.  But before I do, let me just say,  this is another one of those topics people feel strongly about.  I’m going to launch in anyway, because I’m either a glutton for punishment or I just can’t help myself or maybe, just maybe, this will strike a chord for others who may find it helpful, but please do remember I am not pretending to be an expert about any of this.  I am going to relate my story.  If it resonates with anyone else, great and if it doesn’t that’s fine too, but it is one of those topics that needs to be discussed.  So let’s do that.

THE DIET.

The gluten-free, casein-free diet was one of the first things I read about after receiving Emma’s diagnosis.  I have to add that when I read about it I had enormous misgivings that had nothing to do with Autism or my daughter.  You see, from the age of fifteen until my mid-thirties I had an eating disorder.  I compulsively over-ate, I sought comfort and solace in food, but I was also morbidly afraid of gaining weight so I would eat enormous amounts and then taught myself to vomit.  Somewhere along the way I became anorexic too and over the next two plus decades yo-yoed between my all time lowest weight of just under 110 pounds to over 160 pounds.  Food and my weight were nothing short of an obsession.  In truth, I was an addict.  For those of you who recognize the addiction analogy with food I don’t need to say more, but for those of you new to this idea, I’ll just say this, food was as addictive to me as heroin is to a junky, the only difference being I can’t ever just stop eating.  I have to “play in the pool of my addiction” as my fabulous husband likes to say.

I’ve written about all of this ‘here‘ ‘here‘ and again ‘here‘ for those of you interested in all the gritty details.

In my mid-thirties I found help from other food addicts who were no longer active in their addiction.  I was able to form a whole support team who held my hand, talked me off the ledge, who became my allies and eventually I was able to stop the cycle of binging, puking and self-hatred that went along with those behaviors.  By the time I gave birth to Emma I had more than five years of freedom from my food obsessions. (Which at the time seemed like a VERY long time!)  I had my wonderful support group in place and a road map of tools and behaviors to help guide me.  So when I began reading about “the GF/CF diet” and how critical it was to implement should Emma be one of those kids who responded to it, I had a lot of “feelings” about it.  There was no question whether or not I would put her on it, but I also knew I had to be careful because of my history and what it would inevitable kick up for me.  So I called in my supports, made sure I kept honest, made sure my “team” of recovered addicts knew what I was about to embark on and took a deep breath before plunging into that dark water, which I hoped might help my daughter.

I won’t describe in great detail what happened as I’ve written about the diet in detail, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  You can also go to the right hand side bar on this blog, type “diet” into the search box and you’ll be taken to everything I’ve written on the topic over the years.  The short version of all of this is – we saw little change.  Emma’s constipation was unaffected, there may have been a slight increase in eye contact, but not enough to warrant the trauma the diet was causing Emma, who continued to drop weight at a frightening rate.  I wrote about the trauma of the diet and it’s aftermath ‘here‘.  But I must add that her trauma was a significant and distressing piece to all of this.  It is one thing for an individual to decide they must stop eating something because they know it causes their bodies distress, or allergies that are clearly identifiable and another thing to put a non-speaking child on a highly restrictive diet that they cannot comment on and which is only deemed successful by a parent who is doing their best to watch for measurable changes.

As a new parent who is just embarking on all of this, what do you do?  It was overwhelming for me.  I remember vividly how frightened I was.  There was so much information, often conflicting and I remember feeling the stress and anxiety all that information caused.  I also remember feeling terrified that I was doing everything wrong, that I was harming my daughter, setting her up to have an eating disorder further down the road and since my eating disorder was all consuming and eventually caused me to contemplate suicide, this was no small concern.  I became convinced that there was a right and wrong way, that if it worked it was “right” and if it didn’t it was my fault because I had done it “wrong”.

I don’t feel particularly comfortable giving advice to other parents.  As I wrote in the first paragraph, this is one story and it happens to be mine.  It’s the only one I can tell, but that doesn’t mean it will be yours.  So here’s the only question I can answer – If I had to do it all over again (thankfully I do not!) would I have put Emma on the diet that first time?  The answer is – I would have sought out a reputable pediatric neurologist who could have given Emma the blood work necessary to tell us whether the diet was something she would benefit from.  I would have looked for scientific evidence giving me reason to put her on such a diet and without that evidence I would not have put her through it.  There are enough people, regardless of their neurology, who have benefitted enormously from modifying their diet.  There are too many anecdotal stories of significant change from those who do benefit to ignore it as just another bit of quackery.  BUT, and this a big but, no diet, in my opinion, is capable of changing an Autistic child/person into a non-Autistic child or person.  Or as Karla Fisher gave me permission to quote her said, “… it can and may seem like the autism goes away but it is important to remember that it does not. The EF (executive functioning) and SP (sensory processing) issues get reduced but the context difference will always be there so child will always need support.” *Parentheses are mine.

So let’s discuss and if you disagree, explain why, if you agree, please say so because I really love being agreed with! 🙂  And if you have some other thoughts about all of this go ahead and say what they are, because this topic is one that comes up all the time and it is confusing, complicated and for new parents can be the cause for tremendous anxiety and worry, not to mention the upset and trauma it can cause our children.

Emma – November, 2011 – after five weeks on the diet

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Posted in Autism, diets, Parenting

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There is Always Hope, Sometimes It’s Hard To Find

Posted on August 22, 2012 by | 22 comments

Sometimes I feel completely inadequate in the face of our society’s insanity.  Sometimes I wish I weren’t a part of the human race.  Sometimes I feel so much rage at all that’s WRONG with the world, with the mess we’ve made of our planet and each other.  Sometimes I just want to go live in a cave in some part of the world that isn’t inhabited by other people, just me, my husband, my children and a few select others.  I want to build a new world, a new community, a new set of societal rules where minority doesn’t equal less.  Where prejudices weren’t tolerated, where people helped each other without expectations of what they would get in return.  A place where people understood that the reward in helping and being of service to our fellow human beings was in the act of doing and not in the form of monetary gain, gold medals, our names engraved on plaques or statues carved in our likeness.

I spent most of my twenties and half of my thirties in hiding.  I hid inside my eating disorder.  I drank more alcohol than my body could cope with, I smoked cigarettes, I took drugs, I did anything I could NOT to be present.  Even in those moments when I did manage to show up, I wasn’t really present.  Not completely.  Not really.  I was angry and hated how angry I was.  I was depressed and hated how depressed I was.  I couldn’t face any of it, for so many years, I just couldn’t.  Eventually I became suicidal.  I couldn’t stand the feelings any more.  I was filled with so much rage, I turned it inward and thought the answer was to kill myself.  I remember I fantasized about driving to a state where I could buy a gun.  That was how I wanted it all to end.  I would blow my brains out.  I was seeing a therapist and when I admitted this to him he said, “You have to go to a 12 step program.   You have to find people who are struggling with an eating disorder just as you are.”  When I told him all the reasons why this was not a possibility he leaned forward and said, “What have you got to lose?”  I will never forget that.  I will never forget how he looked at me.  I will never forget the feeling I had when he said those words – “What have you got to lose?”

So I went.  And I hated it.  A bunch of obese people, a couple of anorexics and an assortment of others sitting around talking about how they couldn’t stop eating or starving or obsessing.  I was horrified.  How had I ended up here?  Wasn’t I different?  Wasn’t I better than this?  I remember I looked around that circle of people in that dingy room lit with strands of donated christmas lights, despite the fact that it was March, and the signs with various slogans plastered on the wall – “We came for the vanity and stayed for the sanity”  and “One Day At a Time”  and “Progress not perfection” and I thought to myself, I have entered hell.  This is not what I want.  This is not where I want to be.  I am not one of these people.  I am BETTER than them.  I don’t NEED to be here.

But I stayed.  Because really, where else was I going to go?  I knew what lay outside the door of those rooms.  I knew, left to my own devices, I would binge and puke and rage and cry and binge and puke.  I knew the cycle, I’d been doing it for more than twenty years.  So I kept going to the “meetings” and I bought the literature and people gave me little notes with their phone numbers and hearts on them that I’d promptly throw away, but they kept giving me more notes with more little hearts and more phone numbers and eventually, eventually I called one of these people and they took the time to talk to me.  There were the steps, each one mapped out a way of behaving that was different from the way I lived my life, so I began doing them, never once thinking that those “steps” would become a way to live my life more than a decade later.  There was a great deal of talk about taking the next right action, staying in the present, taking things slowly, changing ingrained behaviors and being of service.  There was talk of “god” and again I felt there was no hope for me.  How could there be?  I didn’t believe.

I have never believed in god, I’ve tried, I just don’t, but I do have faith.  I have faith in human being’s ability to do great things if we are shown how.   Some of us need more help than others.  I’m one of them.  I needed a great deal of patience, support and help.  I needed to have my hand held by those who had once been where I was.  I needed others to show me the way.  I needed to hear about their struggles, I needed to know that I wasn’t alone.

When Emma was diagnosed, I had a road map, instructing me, helping me.  All those meetings spent in dingy basements without heat in the winter or air conditioning in the summer had shown me another way.  I knew, if nothing else, I had to keep showing up.  There were days I didn’t want to.  I’ve done a great number of things I wish I could take back.  I’ve made countless mistakes.  But I know, I know with all my being that hiding, that not showing up, isn’t an option.  So I research, I read, I reach out to Autistics, I listen, I ask questions and I try to learn everything I can so that I can better understand and help my daughter.  In helping my daughter, I am helping myself.  I am helping myself become a better human being.  There are mornings when I wake up and think, What the hell am I doing?  I don’t know how to do this.  I don’t know what the right decision is.  Is this the right school?  Is this the best therapy?   Does she understand?  What would she say if she could communicate her thoughts?  What would she tell me?  

Much of the time I don’t know.  What I do know is that the basic principles and actions that got me free from the grip of my eating disorder are the same actions and principles that help me parent both my children.  Be honest.  Find safe people to talk to.  Have the willingness to show up.  Be present.  Reach out to others.  Ask questions.  Listen.  Really listen.  If I’m overwhelmed, acknowledge that.  Take a break.  Sometimes doing nothing is better than doing something.  But the thing that helps me more than anything else (I know I’ve said this so many times) is to be in conversation with Autistics.  When I am feeling sad or confused, or overwhelmed, or have questions, I reach out to my Autistic friends.  And even when they don’t know the answer to my question, they remind me of what’s possible.  They remind me that my neurotypical take on my daughter is often incorrect.  They remind me of all the misinformation out there.  They remind me of what is important.

So for any of you reading this who are despairing, who feel it’s hopeless, that the divide between your child and you is too great, know this:  There are hundreds and hundreds of verbal and nonverbal Autistic adults who are blogging, on Facebook, on Twitter, they are talking, they are asking to be heard, they are asking to be respected, they are asking for the same rights as any other human being, they are asking to be treated as you would want to be treated.  Reach out to them.  Google, read books, read blogs, get on Twitter and Facebook, do the research, ask questions, make comments.  If you’re suicidal or feeling you can no longer cope, get help.  Get support.  There are a great many organizations like 12-step programs that do not cost anything, but rely solely on donations given voluntarily.  Find the people whose voices resonate and then find more.  Because really, what have you got to lose?

2002 – Me with Em and Nic

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For Genisa

Posted on May 2, 2012 by | 7 comments

Someone commented on the Huffington Post piece I wrote – (I hesitated printing it here, because I don’t want you to feel “outed” but I also didn’t want to not mention it because you’re reaching out and the Letter to You was in fact to you and anyone else who feels as you do.)

So Genisa, I hope it’s okay to reprint the comment you left on the Huffington Post here in it’s entirety so that others may find you and reach back to you.

Genisa wrote:

“Thank you for the kind words. I didn’t realize anyone can see how you get to a blog by what you type on Google or on the blogs searches. I did type in that phrase a few weeks ago around April 7th. I would feel bad to think I made someone else feel sad by what I was looking for. I was trying to find others that felt the same way or to read something that I could relate to that would help to make me feel like there was hope, beyond the hopelessness I was feeling and still do feel. I feel so alone because of my inability to socialize appropriately, effectively communicate (especially verbally), and how I always say the wrong thing and make everyone angry at me. I’m an adult, I’m a female and I have Aspegers. I’m invisible to much of society.  I love volunteering, but for some reason others don’t want me to help out.  It really hurts to feel rejected by everyone, even within a group that should understand you because they have children on the autism spectrum themselves.  I want so much to see why I am not accepted and to be able to change it, but I can only change so much.  We do have feelings and we do have abilities if people would just see past our difficulties.”

I then responded with a very long reply,  one I now regret having written as I had to submit it in three parts due to HuffPo’s policy of a 250 word limit on comments.  As of this writing they’ve only published the 3rd part, which is a little horrifying as my words will be taken out of context and people may think I am drawing parallels between addiction and eating disorders and autism, which I AM NOT!  I’m not sure where the first two parts went, but if you just read the last part of my reply, it won’t make any sense or if it does, my guess is the wrong conclusions will be drawn, so I’m going to try to respond in full again here.  I didn’t copy my response first before submitting it, so this response will be slightly different.  Please, please refrain from drawing conclusions and judging my response until you’ve read my full reply and even then do keep in mind I am speaking of the feelings which may or may not be shared and not the circumstances.   Here goes…

Genisa!  I am so glad you reached out and commented.  If you haven’t already gone to the Autism Positivity 2012 Flash Blog, do.  Because of those words typed into Google, you galvanized and inspired a group of bloggers to create the Autism Positivity Flash Blog.  I don’t know how many people have contributed at this moment, but I do know as of yesterday morning over 115 people had written a reply to your words.  Those replies are from Autists, Aspies, Parents of Aspergers and Parents of Autists.  Over 115 people, Genisa.  You are NOT alone.  Go to the flash blog read the responses from people, most of them have blogs, go to their blogs and reach out to the ones that speak to you.  Many will respond.  You have found your people!

When I was in my 20’s I was suicidal.  (This is not something I often talk about.) I felt utterly hopeless, I had an eating disorder, was bulimic with anorexic tendencies that I could not contain or control, my life revolved around eating, puking, how much I weighed and where and what I would eat next, all as a way to quell my feelings of self loathing.  To someone who’s never had an eating disorder it must sound completely insane.  And, in many ways it was.  I felt horrible about myself, I hated who I was.  And I assumed everyone else felt the same about me as I did. I was unlovable.  Of that I was sure.  Please know that I am in no way equating my addiction and eating disorder to autism.  I am simply describing the feelings of isolation and sadness that can be common in both.

It took a long time for me to get the help I needed in order to stop.  But once I found people like myself, (and this is where the similarity in our stories lie) I was able to see, finally, that I was NOT alone.  I remember thinking  it couldn’t be true.  But it was.  There were hundreds and hundreds of people, in every city all over the world, some were suffering just as I was, others knew what it was to suffer, but had moved beyond those painful feelings.  That was the first step out of my personal hell and into another way of living.  A way of living where I could look at myself in the mirror and finally, finally like what I saw staring back at me.  Over time, with a great deal of support, I was able to begin behaving in ways that were honest and true to myself.  I was able to slowly stop trying to please all those other people that I felt condemned me, saw me as a failure, as a “bad” person.  And now, (I’m in my 50’s) my life is better than I ever could have imagined.  I have a wonderful husband who knows me and loves me exactly as I am, who loves me even when I’m angry, sad, irritated and feeling grumpy.  I have two beautiful, amazing and unique children, one who is considered neurotypical and one who is autistic.  And I am a very, very happy human being.  But thirty years ago, I was not.

You are beautiful, Genisa.  Let us love you until you can love yourself.  (Someone said that to me early on in my recovery from bulimia – I had no idea what they were talking about and I didn’t believe them, anyway.  But they did no matter what I said or felt they loved me and eventually I was able to too.)  Reach out as you have, again and again, find those you feel comfortable talking to, develop a relationship with them.  You are not alone, Genisa.  You are so not alone.  And you ARE beautiful.  Please reach out to me anytime.  I, like so many others, am here.

For my latest piece in the Huffington Post, click ‘here‘
To contribute to the Autism Positivity Blog click ‘here‘

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A Little Gratitude

Posted on November 17, 2011 by | 2 comments

There is a lot of great news out there regarding autism.  Many families have tried biomedical and therapeutic interventions with terrific results.  The website, autism.com has great information about treatments that have worked for many children on the spectrum.  No one can predict whether any of these will help your child.

When I was in my early thirties I sought help from the medical community for my bulimia.  I was depressed, could not stop the destructive cycle of binging and throwing up.  There seemed little to live for.  I phoned several rehabs and after speaking with several doctors and eating disorder specialists, I was told the longer a person had an eating disorder, the more intractable and harder to treat it became.  When I mentioned I had been bulimic for going on two decades there was silence.  I remember hanging up the phone and feeling utter despair.  I felt a similar despair when Emma was diagnosed.  But then, as I had when I was still bulimic, I became determined.  That determination served me well during those difficult years.  I never gave up and eventually found enough people who were able to help me, hold my hand and advise me.  I learned I couldn’t recover on my own.  I learned how to ask for help.  I learned to lean on others.  And I learned that in my darkest moments, if I remembered to reach out to someone else in need, to offer to help them, my own problems diminished.  I have tried to live my life in this way ever since.

Sometimes when I read about other people’s successes with their children, while happy for them, I feel sad for Emma.  I believe it’s natural to feel this.  I will never give up on Emma.  I will continue to do all I can to help her and while I do, I continue to work on my impatience while remembering to be grateful for each moment with her.

A little gratitude goes a long way.

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book .com

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Biting and Other Self Injurious Behaviors – Autism

Posted on September 22, 2011 by | Leave a comment

Yesterday Emma came home from school with her forearm covered in bite marks.  I sat down next to Emma on her bed and gently touched her arm.

“You bit!”  She said sadly.

“I can see that,” I said, stroking her arm.

“I want to unlock it,” she said, twirling a scrap of what was once her blanket around and around her index finger.  “I want cokie,” she added.

I continued to stroke her arm.

“You cannot bite!  Emma!  No biting!”  She shouted.

When Emma is very upset, she begins to script.  In other words she mimics things others have said to her using the same tone of voice and if they have an accent, she’ll say the words with the same accent.  It’s a bizarre experience to listen to your upset child alternate between using someone else’s words, tone and inflections and her own voice, as though she were auditioning for all the roles in a play with an ensemble cast.  Sometimes she’ll throw me into the mix – “Oh sweetheart!”  and then severe and scolding – “You cannot bite!  That is not okay,” with her own pleading, “I want cokie, I don’t want to lock it up,” then the logical, calm tone of a teacher or therapist, “You can have cokie later.  First go to the roof, then you can have cokie.”  Her face crumples up while she fights back the tears, often losing the battle and collapsing into an anguished heap of heaving sobs and cries.

At a certain point, when her frustration, anger and upset become more than she can bear she turns it inward and becomes violent toward herself.  The emotions too great for her to contain, she bites herself, leaving the imprint of a full set of teeth upon her arm or finger or hand.  Once, when I held her arm to prevent her from hurting herself she jerked her other arm away and punched herself hard in the face.  The force with which she did this, took my breath away.

I mentioned on this blog, once before, when I was younger I struggled with bulimia.  A more accurate description would be less a struggle and more a complete and utter surrender to the eating disorder.  A therapist I was seeing at the time talked of the act of vomiting as self inflicted violence and I remember being furious with this description.  I wasn’t being violent toward myself, I was simply pursuing a thinner physique.  But after years and years of therapy and then recovery I came to recognize the violence in what I had done to myself for all those years.  When I see my own daughter hurting herself it is impossible for me not to reflect on those years of frustration and rage.

Emma’s acts of self injurious behavior are expressions of her rage, frustration and there is an added piece to this, I am convinced – the desire to control the pain, coupled with her many and varied sensory issues.  I think the combination is deadly.  But how to help her?

That is the question I have no solid answer to.  For now we are trying to explore other ways for her to get her sensory needs met without hurting herself.  However I know from having engaged in destructive behavior for more than two decades how entrenched and addictive that behavior can become.  There are no easy solutions, but then autism itself is like that.

For more on Emma’s journey through a childhood of autism, go to:   www.EmmasHopeBook.com

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Tolerance, Despair and Hope – Autism

Posted on September 13, 2011 by | 5 comments

A follower of this blog emailed me this morning about a new app for the ipad called, Pop It.  It’s a “book” that when one shakes the ipad, the perspective of the story changes.  The creator, an artist named Raghava, gave a talk on Ted.com, which is terrific – about perspective and tolerance of others and the role of art and creativity.  Listening to Raghava made me think of a book I am currently reading by the extremely talented and insightful theologian, James H. Cone.  His book – The Cross and the Lynching Tree is a deeply touching and powerful investigation of suffering and hope.  James Cone writes at length about the nature of faith, how God “could make a way out of no way”, how “hope could remain alive in the world of Jim Crow segregation.”

I do not claim to know of the existence, nor can I claim to know of the non-existence of a god.  I cannot even define that word.  It is not a word that holds any meaning for me.  But I do know what it is to struggle with hope.  Hope for Emma, hope for all our children who will grow up to become adults, who many will fear, ignore or just wish would go away.  Our children with autism are often misunderstood, in their inability to fall into line with societal norms they are in turn rejected by society.  The continued negligence and worse, abuse, of people with disabilities is rampant.  Their abuse is done by people who have deemed them incompetent, imbeciles and without value.  This is the common thread that exists in the abuse of all groups of people throughout history.  It is our intolerance of those we believe to be “less than” that makes us believe we have the “right” to punish, shun, ignore, hurt, torture and kill.

James Cone writes:  “The cross is a paradoxical religious symbol because it inverts the world’s value system with the news that hope comes by way of defeat, that suffering and death do not have the last word, that the last shall be first and the first last.”

When I was in my late teens I began using food as a way to quell anxiety and emotions I felt incapable of dealing with.  My overeating turned to full blown bulimia and the bulimia became a way of life – for 22 years.  I remember when I finally stopped, the idea of “surrender” seemed antithetical to all I had, up to that point, believed.  I thought that if I just had more will power I would be able to stop the destructive behavior.  I believed that the bulimia was something I could control.  I believed that my lack of control simply proved how despicable I was, which only served to fuel more of the same behavior.  It wasn’t until I took a leap of faith – really took in that I was, in fact, out of control, that I received a respite from the behavior.  Early in my “recovery” from bulimia someone said to me, “don’t you think that if you could have controlled the bulimia, you would have by now?  Isn’t it true that in fact you have tried to control it all these years and this is where that control has gotten you?”  With a great deal of support from others who had eating disorders and had come out the other side, was I finally able to find a way out from under it.  In surrendering to the fact that I was unable to control it, was I finally able to find freedom from it.

I’m all over the map with this post, but perhaps some of these thoughts will prove helpful to someone else or if not at least encourage thought and conversation.

For more on Emma and our journey through her childhood of autism, go to:   www.EmmasHopeBook.com

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