Tag Archives: Mental Health

There Once Was A Girl…

Posted on August 13, 2013 by | 28 comments

There once was a girl who was in tremendous pain.  Her pain was so great she couldn’t manage it.  She tried, believe me, she tried.  She immersed herself in books, particular those dealing with people’s neurology, but also dabbled in science fiction, mysteries, thrillers, horror, romance, this was before the age of memoirs, so she devoured studies of other people written by psychiatrists, therapists of every ilk and doctors.  Losing herself in reading was thrilling, but it didn’t help her sort through the intense feelings she had.  All those books couldn’t begin to heal her often overwhelming feelings, anxiety, sadness and fear.

She thought that moving away might help so she did that, and then she moved farther and farther still and eventually she found herself living in another country and all those intense feelings moved right along with her.  By this time she was using substances to quell the pain, on a daily basis.   She knew she could zone out and for a little while anyway she would feel nothing at all and it was a great relief.  But as soon as the substance wore off she was left, once again, with herself.  She went from seeking relief, to needing relief, to feeling that if she didn’t do those things that gave her even momentary solace she might die.

There is no other way to describe what she went through when she could not indulge in certain behaviors.  SHE WOULD DIE.  She did not know this for a fact, but she felt sure that she could not exist without the things that changed her consciousness.  She was convinced that these substances helped her cope and that without them she would not be able to, and all those feelings would overwhelm her, suffocate her.  She lived in terror of this.  Years went by and she did the best she could, but her need for calm and peace was never satiated.

As time went on she knew that if she was going to continue living in this world she would have to change, she would have to find other ways of coping, of just being.  And again her fears both mesmerized and caused her to stay stuck doing the same things again and again that now did not give her the relief they once did.  She knew in her heart she would die if she continued doing what she had been doing.  She knew it was only a matter of time now.  The thing that she once thought was keeping her from dying, was the very thing that would kill her.  Still, how to change?  What could she do?  How would she stop?

At first she sought help from doctors and therapists and the medical profession.  She tried the various things they told her to do.  She made charts and ate specific foods and took supplements and lots and lots of vitamins, but nothing she did made a difference.  She went to psychologists and talked and talked, for years she talked, and while that helped her understand some of what ailed her, all that talk didn’t help her stop hurting herself.  One therapist, someone who loved her very much and had been trying to help her for many years said to her, you must find others who do what you do, they will help you.  So she found them.  Hundreds of people just like her who did the same things she was doing.  They listened to her pain and shame and they nodded their heads and told stories of their own and they said, “Here. Grab our hand.  We will help you.  We will show you the way through because you cannot do this on your own.  This isn’t about will power, this isn’t about desire, this is about needing help.”  And so she did, though she was filled with abject terror and was not at all sure she would be able to follow them, she did.  They taught her to breathe when she was scared and they took her calls in the middle of the night and they came to her when she was too frightened to leave her apartment and they sat with her when she was too overwhelmed to move.  They taught her that she alone could not help herself, she needed others.  This was both a great relief and also her greatest fear.

Over time she learned to tolerate all those feelings she once believed would kill her.  It was incredible!  She could not believe she was able to sit with feelings!  This was a revelation and she grew stronger and more able to be in the world.  She learned to ask for help and she found some people were safe and others were not.  She learned to be in a relationship with another person and to respect them and to honor their boundaries and she experienced the joy of kindness and acting in kindness for no other reason than because it was a part of who she was – to be kind.  She experienced the joy of helping others who were in pain and came to believe there is no greater gift in this life than to offer a hand to another being who is in the depths of despair and pain.

(To be continued)

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Posted in Addiction, fear, Gratitude

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Dreams of a New World…

Posted on December 24, 2012 by | 50 comments

Moral dilemmas continue to plague…  I have never seen myself as one of those mothers who poured all of her competitive spirit into shamelessly promoting her child.  A kind of stage mom gone rogue, using her kid’s exuberant charm and/or talents to gain recognition from thousands of strangers.  A kind of warped narcissistic mirror of neediness, an adult version of a child’s plea, Look at me!  Look at me!  Yet, in light of recent events with parents blogging about their children, posting photos, using their real names, telling excruciatingly personal stories, many not kind or endearing, while supposedly illuminating their child’s and their struggles for all the world to read, judge and comment on as a way to advocate for better services, it’s impossible for me not to reflect on what exactly am I doing here and how is what I’m doing so dissimilar?

I began this blog as a record, of what I hoped and expected would be, Em’s progress after a series of radical stem cell treatments.  I didn’t think or expect this would be read by anyone other than family and friends and those who might be thinking of embarking on similar radical treatments to “cure” their Autistic child.  At the time, April 2010, I wasn’t thinking ahead, I didn’t consider the broader implications, I thought of this space, this blank page, as a place I could come to record what I saw and hoped for, while believing that whatever it was, it would be “miraculous”.

What I didn’t know, couldn’t have known, was that the miracle that occurred ended up having nothing to do with stem cell treatments or any other treatment or therapy.  The miracle has been my own evolution, a kind of 180 degree turn from where I once was in my thinking, in my attitude and in my expectations about autism and what it means to be autistic.  And while there is no doubt that my daughter continues to make wonderful, steady progress, it is not as the result of various remedies and treatments we embarked upon, but rather as a direct result of NOT engaging in those various so-called “therapies”.   What harm we may have done to our daughter because of those treatments, bio-medical and otherwise, is something we will never know, but must live with the uncertainty for the rest of our lives.  

So why write about all of this?  Does the world really need another parent blog about their kid?  Probably not.  However, and here is where things get muddy for me, every time I think about ending this blog, every time I think I can’t keep doing this, it’s not right, it’s not fair to my daughter, it’s not for me to write about her, it’s not for me to broadcast what she says and/or does, it’s not for me to post photos of her, these are not my truths, they are hers to tell if and when she can, every time I think along these lines I wonder if I would have done things differently had I read a blog of someone’s journey that was similar to mine?  Would I have still gone to such drastic lengths?

Is it possible a child’s life might be made just a little easier because of something I write or say here?  Is that just ridiculously grandiose to even think in these terms?  And yet, I have to go back to my own history of having an eating disorder for more than 2o years and the help I was given from hearing others candid, uncensored stories of hope and recovery.  Those stories that resonated were the ones I clung to so desperately during those first painful and terrifying years as I tried to change my life.  Years when making it through a single day without binging and puking was considered a “good” day.  I needed those stories.  Had those people NOT told them I doubt very much I would have gotten through.  I don’t mean that to sound self-congratulatory, it’s actually the opposite, I could not have gotten to where I am without all those people, all those stories, all those people who reached out to me and said, “it’s okay, you can do this.  Here’s my number, give me a call if you’re in trouble.”  I learned to lean on people, I learned that I didn’t have all the answers, I learned that there were more things I couldn’t control than I could.  I learned what it meant to accept what is, the here and now.  I learned about being present and that I hold my breath when I’m fearful and I learned that I wasn’t alone.

So in the end, this blog is no longer a document of “my daughter’s journey through a childhood of autism” as I once described it.  This blog is a document of my journey as a parent and as a human being and how autism has changed my views.  It is a far more beautiful and complex world than I ever imagined or dreamed possible.  It is a world that is evolving, far too slowly for my taste, but I have seen glimmers of what is possible.  A world where we do not segregate, where ALL people are treated as equals, not just as an idea, but in reality, a world where everyone is fortunate enough to have an Autistic person in their life.  A world where autism is no longer feared, but is embraced.

Sunset

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The Art of Breathing and Just Being: Lessons From my Daughter

Posted on December 17, 2012 by | 18 comments

One of the single most difficult things I have had to practice in life is the art of being present.  Simply being shouldn’t be so hard, yet I have found it is.  It is something I have to practice, something, I have come to understand, that is much like breathing, I will never be “done with it”.   Doing nothing is surprisingly difficult.  Doing nothing in the face of horror is even harder.  When I have a great many feelings, sitting still and being present is all the more difficult.  The last thing I want to do is sit and actually feel.  Why would I want to do that?  Now’s the time for action (!) and yet, it is during these times that it is vitally important for me to practice being still.  Every fiber of my being is screaming at me to move, to make sense of, to understand, to find the thing, the motive, something or someone I can blame, something that allows me to say, oh yes, of course it was that, that’s why this has happened.

Yet, it is an illusion.  The feelings remain no matter what is said.  No matter what has been written, the feelings remain.  Feelings – grief, fear, horror, sadness, confusion, pain, suffering, outrage and anger.  Feelings.  Lean into them.  Do nothing.  Breathe.  

Emma, unlike me, does not need to practice the art of being.  She does this without trying.  It seems to me, as I watch her, that she comes to this idea of “being present” naturally.  It is not an “idea” for her, it is simply life.  Emma just “is”.  Emma is one of the happiest, most joyful beings I have ever come into contact with.  Her median state is one of happiness.   She is without judgement or blame.  She does not hold onto resentments or grudges.  Emma does not talk about people behind their backs, she does not condemn or bully.  Emma is not dishonest or cruel.  And yes, Emma is Autistic, which must not to be confused with “mental illness”.   In fact, Emma is the opposite of “mentally ill”.  Perhaps because of her neurology she is able to be present in a way that I do not come to as easily.  I must work hard at something she does not think about.

People say all kinds of things in anger, in grief that have little to do with anything.  People say things while trying to make sense of something that is senseless.  They latch on to an idea, they offer a reason, a cause, it’s because of this, or that they say.  Oh, that person did that because of __________.  We talk and reason and blame.  People say and do things we find offensive, things that will hurt us and our children.  When people are scared they say and do things they would not, upon deeper reflection, say and do.  So don’t do anything, I keep telling myself. Sit and be still.  But it hurts to do so.

Don’t say anything, just sit and be present.  And it feels unbearable.

Don’t move, just be present.  Look around.  What do you see?  What do you hear?  What do you smell.  What are you feeling?   I don’t want to feel.  

Close your eyes.

Breathe.   Fear.

Be present.  I can’t!

Breathe.   Anger.

Breathe.  More fear.

Breathe.

Breathe and just be.

Emma performing for us, Saturday evening

1Em_performs

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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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ICare4Autism – An Opportunity to Make a Difference

Posted on August 9, 2012 by | 17 comments

I attended the ICare4Autism conference in Jerusalem last week.  I wrote about this not long ago in the post Synchronicity, Jerusalem and Autism. As a quick recap Jerusalem was the place Richard and I had intended to go for our honeymoon.  Not six weeks before we were due to leave, the intifada broke out, forcing us to abandon our plans. That was thirteen years ago.  This past May I received a letter from the “State of Israel” inviting me to be their guest.

In addition Dr. Henry and Dr. Kamila Markram were presenting at the conference.  They are the neuroscientist team who came up with The Intense World Theory For Autism, the only theory to date that has validated my observations of my ten-year old daughter, Emma.  When I read they were going to be in Jerusalem this past winter I joked with Richard about how amazing it would be to meet them AND go to Jerusalem.  At the time we just laughed at the insanity of the idea and went on with our lives.  Then the invitation arrived.  I knew it meant I would need to write about the conference.  Writing about the conference was why I’d been invited.

Except I do not consider myself a “journalist.”  I am not an impartial, unbiased observer, prepared to provide an even-handed summation of my observations.  I am highly opinionated and exceptionally biased in my ever evolving perspective on autism.  I regard the motivations of most so-called autism advocacy organizations with suspicion and even outrage.  I am frequently hostile in my view of the self-appointed Autism experts, medical charlatans and other “professionals” who make a living off desperate parents, like myself.  If I had all the money I’ve spent on the various “cures,” biomedical interventions and dubious therapies we have employed over these past eight years, I wouldn’t have cared about an invitation providing me with airfare and hotel accommodations.

In less than a year, my perspective has radically changed.  Had I attended this conference last August my focus would have been on meeting as many researchers and doctors as time would allow.  I would have spent each break roaming through the many tables set up outside the conference rooms selling all manner of goods purported to help a child with Autism (and yes, that is how I would have described my daughter – a child with Autism) hoping for something that would cure my daughter with the same longing and desperation that had dragged me from one “specialist” to the next for all those years, not so very long ago.

But that was before.

That was before we began implementing Emma’s literacy program.  That was before Emma showed signs that something we tried could and would work.  That was before I read Henry and Kamila Markram’s Intense World Theory.  That was before I began reading the blogs of Autistic adults and as a result began communicating with a number of them (see yesterday’s post).   Suddenly, and it really was relatively quick,  I began to view my daughter through the eyes of someone seeking to understand rather than fix.  I began to see her actions, whether it was stimming or echolalia or self-injurious behavior – as her attempts to communicate rather than aberrant behaviors that needed to be quelled and eliminated.

Was ICare4Autism going to be different than any of the other organizations out there promoting interventions, therapies and the ever illusive and questionable promise of a cure?  The information I compiled prior to the conference did not look promising.  But, I kept reassuring myself, the Markrams would be there and if nothing else, I had set up an interview to speak with them.  Beyond that there seemed little to distinguish them from any of the other organizations using “autism” in their name.  Still I went to the opening dinner with an upbeat, hopeful attitude, eager for a better idea of the organizations intentions.  When the opening video played I consoled myself that at least the distraught parents filmed were not openly weeping and talking about their distress in front of their children.  By the way, just in case anyone misunderstands me, less than two years ago I could have been one of those sobbing parents and I would have wept in front of my daughter and spoken of her with the mistaken assumption that she couldn’t understand.  It would not have occurred to me that hearing her mother speak of a desire to cure her might have made her feel horrible, sad and depressed, things she wouldn’t be able to communicate to me, which would only further her sadness and feelings of isolation.  I get it.  Really I do.

The conference began with a Welcoming Ceremony with a speech from the founder and CEO, Joshua Weinstein, who called for communication and collaboration.  He spoke of plans to move their headquarters to Jerusalem, a city with a long history of misunderstanding and strife, making his call for communication and collaboration all the more significant. The Mayor of Jerusalem, Nir Barkat spoke of his pride in hosting the ICare4Autism conference and eagerness in it becoming a world center for Autism research.  Dr. Shekhar Saxena, director of Mental Health and Substance Abuse at the World Health Organization spoke briefly as did a number of others.  And then the Autistic Boys Choir got on the stage.  Seven teenagers began to sing, their voices rang loud and clear, their pitch was perfect, their enthusiasm and joy infectious and the audience began to weep.  I was right there with them, madly rummaging around for my kleenex, trying not to let out too much noise other than the odd sniffle.   I wept from sheer gratitude, because these teenage boys/men were like my daughter.  One young man in particular who clearly reveled in performing reminded me of Emma.  So yes, I wept from relief, from joy, from seeing Autism shown not as a tragedy, but as difference and of hope for what can only be described as the possibilities, not just for our children, but for us as a society when we hand the microphone over to those we say we care about and want to help – Autistics.

Over the course of the next day and a half I tried to meet with Joshua Weinstein, but for a variety of reasons, wasn’t able to.  Then finally in the afternoon of the last day of the conference, I saw Joshua Weinstein and mustered up the courage to approach him.  I spoke to him about why the Autism = Tragedy model needed to be discarded, that while it may get people to write checks it was an unbalanced view, completely disregarding the feelings of Autistics (our children) who are being sent the message that they make their parents and families desperately unhappy, the very people who are supposedly trying to help them.  Josh was not only kind and receptive, but later thanked me for coming over to him.   He assured me that he really was interested in communicating with Autistics and would take me up on my offer to introduce him to a number of people I know, both verbal and nonverbal, and am in contact with.

Josh invited me to be on the advisory board, which I’ve agreed to.  He is working with a number of people at the UN, as well as WHO (World Health Organization) and asked that I attend the UN meeting.  He has, since we spoke at the conference called and we are in email contact demonstrating his sincere desire to follow through with his promises and words.  Am I surprised?  Yes.  I am.  But more than that I am hopeful.  Hopeful that ICare4Autism will actually include the very people they say they care about by putting them on their advisory board and by listening to them as they develop and attempt to fulfill their mission in becoming a world-wide Autism organization that does more than pay lip service to those who are Autistic.

“Caring about autism – what we know of it and how we put it in our narratives – is something from which all manner of people can and must benefit.”  Representing Autism Culture, Narrative, Fascination by Stuart Murray

Autistic Boys Choir

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