Tag Archives: family

Happy Halloween!

For Halloween Richard is going to be a ghoul-ish executioner, complete with bloodied axe and lots of pseudo leather and chains.  We live in Chelsea.  He’s a big hit.  Nic will be a kind of adorable bunny gone rogue.  His pink bunny costume is covered in splattered blood and the bunny head makes it clear that the bunny has gone from prey to predator.  I will be a gangster. Yes I have the plastic tommy gun and black and white patent leather heels that match my black and white pinstriped suit and black fedora.  The only thing missing will be the platinum white hair, I’m sticking with my grey-blonde, thank you very much.  And Emma decided to be a wicked witch, complete with her “witchy-witchy” shoes, black and green striped knee socks, black witch’s dress, sort of like the one in the Broadway show – Wicked and black witch’s hat with black tulle, it’s all very witchy elegance at its finest.

When I asked Emma if she wanted to paint her face green, she looked somewhat horrified by the idea and then typed, “No thanks.”  She’s very polite.

Merlin does not need a costume and will go as is.

IMG_3246

Halloween is a big deal here in New York City.  The halloween parade draws tens of thousands of people and our block is impossible to get to with all the police, crowds of people and barricades.  I would be happy to get dressed up and stay home, answer the door to the few children in our building who might ring the door bell and hand out treats.  However I am the only one who feels this way when it comes to going out for Halloween.

Even though I’m not big on the actual going from door to door and making my way through the crowds of people part of halloween, I do love preparing for Halloween.  I wrote a post about some of this on my other blog, Where Art and Life Meet and posted lots of wonderful photographs of pumpkin carving, halloween wreaths and halloween treats.  So for all you crafts and art lovers, go look at the photographs I posted.

I will end this post with a photograph of one of the many pumpkins we carved last weekend.  This one was made by Richard.  He did not use his executioner’s axe.

A Grinning Pumpkin made by Richard Long

A Grinning Pumpkin made by Richard Long

HAPPY HALLOWEEN!

The Gift of Emma

In the days leading up to Christmas, Ariane excitedly told me that Emma had written, “I want to write a story about Daddy.” Ariane said it was going to be my Christmas present. Obviously, I was incredibly excited as well. But on the following day Ariane came to me after her writing session with Emma and said:

“This story is going to make you cry.”

On Christmas morning, when I untied the bow around the paper Ariane had rolled up, I braced myself. The story was indeed sad, yet hopeful, wonderful and important, like all of Emma’s stories. It was also very private, and so, days later, I still hadn’t asked Emma if I could/should publish it. Ariane asked her today and Emma said she didn’t want the entire story published, but it was okay to post this section:

“One day there was a man and woman who fell in love.  They eventually had two children, one son and one daughter.  They were very happy.  The daughter was distinctly different, but meant well.  She did not understand many of the ways of her family.

“Her father told her that she was kind and smart.  She ran away because no one believed her to be clever, even though her parents did.  Her father wanted many to realize how smart she really was.  So he told others “do not treat my daughter like a baby.”  People did not listen.

“His daughter was sad, but her parents believed in her, and that mattered more.  She was the luckiest girl in the world.”

I’m so glad Emma feels this way. I wish she were even “luckier” and we had known all these things about her many years ago. I do truly believe that I am the luckiest dad in the world. Like Emma, I feel incredibly sad that I underestimated Emma for so long, that I was so utterly clueless to this entirely different aspect of her, that I could not see and appreciate. But I feel so blessed today to hear and see all these amazing parts of Emma I had never understood.

“Better late than never” is an apt phrase to convey both the joy and sorrow I feel, now that I’m aware of what is certainly only a small fraction of Emma’s talents, feelings, insights, intelligence and her poetic soul. It is also an apt phrase to convey the necessity of getting this message out to the world, something that Emma and Ariane, and so many other autistic people and their families and friends have been struggling so hard to do for so long, in the face of an Everest-sized mountain of misinformation from so-called “autism experts.” The most heinous sub(human) class of these is the “debunking” posse, who seem to spend every waking moment of their lives trying to discredit any assisted communication methods for autistic people. Yet no matter how hard they try, and they do try really hard–they will never succeed in keeping these blindingly brilliant autistic minds imprisoned by their willful and malicious ignorance.

The three best gifts I’ve ever been blessed with are my wife Ariane (who I met at a party on Christmas day 15 years ago!), and my wonderful children, Nicholas (age 13), and Emma (who turns 12 in January).

Emma is such a wonderful gift in so many ways. I could write another (even longer) post just listing all the amazing blessings she has brought to me and our family. But I’ll simply conclude by repeating one of the sections of her story that Emma agreed to publish, because it’s the kind of “better late than never” message so many more people need to hear:

“Her father wanted many to realize how smart she really was.  So he told others ‘do not treat my daughter like a baby.’  People did not listen.”

Maybe they are listening now, Emma. Maybe more and more people will hear your voice and the voices of your autistic brothers and sisters. Maybe all these people will someday be lucky enough to experience the gift of Emma.

Emma showing off her new red beret and her new art work (a collage of relatives).

Emma showing off her new red beret and her new art work (a collage of relatives).

 

How We Discuss Our Children

Some people say that parents like me are dismissive of how difficult it is to parent an Autistic child.  They say that we are choosing not to dwell on the negative and that it’s important that the other side be shown.  They suggest that by NOT discussing how very challenging it is, we are doing harm, that it is in the stories of horror and devastation that services are gotten.  They say that pathologizing autism is necessary because without talking about it as a pathology, funding would be diminished or cut off.  Many people assume that those of us who write about the positive aspects, the joys, the triumphs that we experience as parents of Autistic children, we must have “high functioning” children and that we cannot possibly know what it is like to have a child who is “severe”.   We are accused of diminishing or dismissing the suffering other parents experience.

When I was fairly new to all of this, not so long ago, I thought nothing of writing about my child’s latest upset in graphic detail.  Not so long ago, I wrote about my child, believing she did not and could not understand what was being written, that she would never read my words, that she could not and did not understand what I said to others, what I wrote.  I posted photos of her, never once considering whether she wanted such a photo posted on the internet for all to see.  It did not occur to me to ask her.  Literally, it did not occur to me.  These are things I now am aware of.  Posts have been deleted, photos have been removed, but had I continued to listen to what I was being told, had I not seen and met non-speaking Autistic children, teenagers and adults who wrote how it felt to be spoken of, written about, and treated as though they weren’t there, I don’t know that I would have thought to stop.

It isn’t that parenting is never challenging, hell, life is challenging, it’s that in talking about parenting it too often sounds like we are blaming our child for our suffering.  It’s like when my husband and I fight and I think to myself, if he didn’t do x, y and z, I wouldn’t get so angry and while there may be some truth to that, it also isn’t owning up to my part in the fight.  So many people write about parenting but they don’t seem to connect it to how they respond to this situation with their child, is how they respond to stress, not getting what we want, impatience, dealing with upheaval, etc.  It seems to me, the less common conversation is the one that talks about personal responsibility and honoring another person, instead of blaming them for what ails us.

In all of this, the Autistic person, whether they are a child, teenager or an adult, are being “treated as though they weren’t there.”  This was the thing that changed everything for me.  Realizing that there is a person there.  Right there.  Right here.  Right in front of me.  And this person has feelings and thoughts and her opinions about herself are affected by what I’m doing and saying about her.  She is just like any other child, who would feel tremendously sad and even traumatized knowing that her parent blames her for their pain and upset.  

This post is being interrupted by more pressing matters, so I will have to come back to this when I have more time…

Em on her pogo stick copy

The Joy of Being Wrong

When my daughter was eight I was so envious of my friends who had daughters the same age, because they were going out together, having mother/daughter outings, getting pedicures, doing girlie things and I despaired that I would never have these kinds of outings with my child.  I know how selfish this sounds.  I know this statement is all about me and has nothing to do with my child or her interests or her feelings.  I always dislike hearing parents talk about their children as though they were some sort of glorified extension of themselves, like a conduit for all the parent’s failings, as though this child was a metaphoric phoenix rising from the parent’s DNA, destined to be all that the parent hopes for, but has failed to do and be themselves.  But at the time I did feel envy and also, was aware enough to also feel badly for having those feelings.

Flash forward to this summer.

A friend of ours returned home one Saturday afternoon with Emma, who ecstatically showed off her newly painted RED toenails.  I was astonished. “You guys went and had a pedicure?” I asked.  “Red toenails!” Emma exclaimed with glee, while positioning her foot next to our friend’s, who had the same color red on her toenails.  “They match!”  Since then Emma and I have gone every other weekend for our “pedicure spa” where we sit side by side and have our toenails painted.  Emma picks out the color, which she insists we both have so that we “match.”  Both of us look forward to these outings.

There are other examples of times I’ve despaired, thinking that whatever our current situation is, it will remain so forever.  This is not specific to my daughter, but is something I am aware that I have a tendency to do in life and always have.  The idea that things are fluid and constantly change, is a tough concept for me.  I tend towards extreme thinking.  When things seem bleak, I am convinced they will always be.  When things are good I am suspicious and await the inevitable.

It is as though I believe I will have to pay for those good times, like an invisible law that shows no mercy.  The good times are tempered with the “knowing” that they will be fleeting and won’t last.  Over the decades I’ve gotten better at this, I am aware this is my tendency.  I catch my thoughts quicker and am able to remind myself that I do not know what will happen next.  But still I find myself easily sliding back into that old way of thinking.  It’s not the reality of someone else’s life, it is the idea of someone else’s life that I compare myself to and that idea is never true.

These days I try to head off comparing the minute I become aware of it.  It does not serve me.  It does nothing to help me.  I am not a better person because of it.  It makes me sad and miserable and has nothing to do with either of my children or my life.  In fact that thinking hurts my children.  Both are highly sensitive to other people’s moods, they easily pick up on emotions and take them on.

At the moment, Emma and I are sporting pink toenails and every time I see our toes, I smile. They remind me of all those years when everything seemed grim and hopeless.  When despair surrounded my every breath, when desperation hung in the air I breathed, when I believed I knew what we were up against, when I believed this was going to be our life, when I thought I knew and no one could convince me otherwise.  That toenail polish, that gorgeous pink toenail polish that Emma insisted we both wear is proof of just how wrong I was.  About everything.  About everything.

The Conversation Continues…

The comments continue to pour in, both through email and on yesterday’s post and the post from the day before on the topic of violence and coping when overwhelmed and overloaded.  A number of parents have emailed that a behavioral program helped tremendously and a few wrote about various medications they’ve (almost always) reluctantly given their child as a “last resort”.  One parent wrote:  “I had to go to the ER because he broke my nose and when the doc saw the bruises on my arms and my broken finger they called social services.  I was told my child would be taken from me.  Another doc prescribed _____  (anti-psychotic drug) and told me it was the only shot I had at keeping my son with me.  Sometimes the choices we parents are given suck.  I never went back to the ER even after he broke two ribs and my toe.  Years later he was able to type that three kids were bullying him on the school bus and had been for years.

Has anyone had experience with being given a behavioral plan?  Did it help?  If it did, what was it exactly?   And if it didn’t, and you don’t mind sharing about it, what was your experience of it like?  Did anyone have drugs given to you as a child and what was your experience with that?   As always, I will not use whatever name you give unless you leave it in the comments section of this blog or give me explicit permission.

Feministaspie wrote:  “The adults around me would tell me to take deep breaths, count to ten etc, and while I knew they meant well (and frankly, that was a much better way for them to deal with me than some of the other things I’ve read online, so I’m lucky really), that sort of thing didn’t really work for me. This was because at the time, I’d basically go into fight-or-flight mode so I absolutely was not thinking about that at all. I think it might also be to do with taking things literally, because apparently I’d just scream the numbers 1 through 10 at whoever told me to count, which obviously didn’t help matters. In hindsight, perhaps a more detailed plan was needed as far as that was concerned!! This made me feel really frustrated because that sort of thing was supposed to help and it didn’t and I felt like it was completely hopeless.

Ashmire wrote:  “I’d also add that sometimes there is kind of a feeling of powerlessness, of knowing that no matter how bad I hurt someone I don’t/didn’t have the capacity to hurt them as much as they are hurting me, because they are hurting me with emotions and I can only use physical damage which just doesn’t, can’t, ever, inflict as much pain as emotions can.

bjforshaw wrote:  “As for what helps, I would say that being given space is paramount. Confronting the violence feels like being cornered and makes it worse. What helps me is whatever makes me feel safe and unthreatened. I’m not able to speak or even type (I hate to think what effect my pounding would have on my keyboard) but as long as I’m not pressured I will be able to talk about it after I calm down. It has to be in my own time, on my own terms. That’s when I can start to explore the causes, the triggers.

In his blog post, Violence as a Means of Expression, bjforshaw writes: “Why do I do it? That’s a very important question. I am usually able to communicate effectively but emotion is a minefield: I have alexithymia which means I have great difficulty identifying and describing my emotional states. Strong emotions, especially negative ones, are very stressful. Add to that the fact that I become practically non-verbal when under stress — words are in my mind but I can’t get them to come out of my mouth — and you have a recipe for disaster. I’m not able to communicate my state of mind or my immediate needs which adds to the sense of frustration.

When Upset Turns Violent

A number of people have reached out to me privately with questions about how to help their child who is violent.  They fear for their other children’s safety as well as their own, but are frightened to reach out for help because they worry their child will be taken from them.  This is not an easy topic.  If you do not have a child who is prone to violence, it is difficult to imagine what that child is going through.  If you are not and have never been the recipient of violence it is difficult to imagine what that is like.  Similar to self injury/harm this is a hot button topic for many people, not just parents who feel powerless to help their child and feel they have nowhere to turn, but for the person who does not have any other way to express themselves.

So I am asking for all of your help.  If you once were or currently are someone who knows anything about responding to the environment and people in your life with violence, and are comfortable telling me what that experience is/was like for you, please email me at:  emmashopeblog@gmail.com.  Also if you are in a position to tell me what might have helped, what, if anything, might have given you the support you needed/wanted.  Was there anyone you could talk to?  If you cannot speak or cannot rely on verbal speech when upset, were you able to type?  Would that have helped?  Is there anything that might help/would have helped?  Do you have advice for parents?  Do you have advice for those who are under the care of another person?  If you are the parent of a child you are frightened of and want to reach out, please do.  Please describe your situation as best you can, as well as what might be helpful to you.  In other words would a help/hotline (if one were available) be something you would use?  Would you prefer an anonymous support group where you could discuss what you are going through with others?  Would something else be helpful?  Anyone who contacts me will remain anonymous.  Anything you tell me, I will quote as anonymous.  If you prefer that what you write NOT be quoted, please be sure to tell me that.  All names and/or places you tell me about will remain confidential.

I don’t know what can be done, but it seems to me, from some of the stories I’m being told, that something needs to be done/created to help all involved.  Maybe you know of resources that have helped, maybe something you’ve tried helped, maybe there was something/one helped you.  If any of you know of anything, please let me know.  Any and all information is appreciated.  Maybe just talking about what’s going on in a safe place is a start.  You can also write in the comments section anonymously, if you prefer doing that.

Justifying Actions

I just wrote an angry rant.  As I was getting set to publish it, someone tweeted me about something unrelated.  They wrote that in order for people, who may be feeling desperate, to hear what you (the universal/general you) have to say, there is a need for kindness, and it stopped me in my tracks.  Kindness…  In my fury I had forgotten all about kindness and I felt like a balloon that had just been popped. Pfssssst…  All that lovely anger that was protecting me from all those other feelings I have, oozed out.  Pffffffssssst.  And you know what I was left with?  Sadness.  Overwhelming sadness and something else.  Fear.  Tremendous fear.

Sadness and fear do not make me feel powerful.  Instead they make me feel vulnerable.  I don’t like feeling sad and vulnerable.  I want to feel powerful, but all of these things are illusions at best.  Just because I feel powerful does not make it so.  Just because I feel vulnerable does not mean I am.

Someone wrote on a public forum that they were heart-broken over a mother who tried to kill herself and her child.  They followed that thought with this, “she was given a burden she could not bear” and I felt like someone had kicked me in the solar plexus.  You see, I take those words personally.  They may as well have said that they believed that about one of my children.  Please, please, do not say a child, any child is a burden.  Even if you believe this to be true, do not say those words in public.  Do not.  This is what private support groups are for. This is why people see psychiatrists, psychologists, counselors, this is why we call close friends whom we love and trust and who we know will honor what we say in confidence and keep what we say confidential.  In moments of terrible pain all of us can and do say things that upon further reflection we wish we hadn’t.  We think things we do not really believe in moments of upset.  We may even act on these things that we think and say, these are the times we wish we’d said and done nothing.

Not every feeling must be acted upon.  Not every thought needs to be said out loud.  Please, when you say someone’s child is a burden and that it was too great to bear and that this was why they tried to kill that child, it places a stigma on all our children.  This kind of language terrifies me.  I am terrified someone who believes Autistic children are a burden will come into contact with my child and treat her accordingly.  Please if you believe Autistic children are a burden, if you feel their neurology makes them inferior, do not go into the field of autism.  Do not convince yourself that you will be able to help that person, you won’t.  Feeling sorry and pity will not help or make that person’s life better.  In addition, when we believe another person is a “burden” it is being suggested that there are situations when it is acceptable to not be held responsible for what we say and do.  It is being suggested that, to hurt someone we believe is a burden, or worse, take that person’s life, is a reasonable thing to do.  It’s not.  It’s not okay.  We cannot, in our desire for compassion, allow this to ever be okay.   It is not okay.

Finally, if you truly believe someone, whether it is your child, someone else’s child or just in general, is a burden, please talk about these feelings and thoughts with a professional or someone you trust who can help you work through these beliefs with compassion and care.  If you do not know where to turn or do not understand why this kind of thinking is problematic, email me privately so that I can try to better explain or can find someone who will be able to explain this in a way you can hear.  My email is:  emmashopeblog@gmail.com

Once Upon A Time (Part 3)

Part one and two are ‘here‘ and ‘here‘.

So this woman who was once a troubled girl, now the mother to two small children, one of whom was a beautiful little girl with curly white/blonde locks and chubby cheeks and dimpled knees, wondered how she ever gave birth to such perfection.  She was filled with gratitude and felt each of her children were gifts, tiny gifts that she was being given the opportunity to influence and even direct, but who were their own people, with their own temperaments and personalities, unique and wonderful in their own right.  She believed this fiercely.  But do not forget, this woman lived for many years of her adult life, prior to giving birth to her two wonderful children, believing she was bad.  She imagined that inside of her there was darkness, as though there was a bad seed deep within her soul and for many, many years she had tried to purge that badness from her being.  She believed she needed to be “fixed” and that left to her own devices she was fundamentally flawed and that if people got to know her, they too would learn this truth about her and it was only a matter of time before she was found out until others who had once felt similarly about themselves, convinced her that this was untrue.  These people showed her over time that in fact there was tremendous goodness within her and they taught her how to nurture that goodness and how to behave in ways that fostered it and encouraged it to grow and even flourish.

But then, now years later, she saw aspects of herself in her daughter.  Behaviors she used to do, but no longer did.  Her daughter loved to look at photographs and there were a great many to view.  Her daughter liked to sit on the floor with more than a hundred photographs piled in front of her and quickly scan them.  If one was missing, her daughter knew instantly and began to howl in great distress.  The mother watched in confusion as this scene unfurled.  The daughter, perfectly happy one minute, and then in terrible agony the next could not be consoled and would hurt herself by punching herself in the face or biting her hand or arm.  And something inside the mother clicked.  She recognized this desire to control her pain.  It took her back to a time when she needed things to be a certain way and when they were not she felt her entire life was unraveling and that her very existence was put into jeopardy and the only release from the horror was to hurt herself.  There was a kind of twisted logic to all of this, her self-induced pain, a pain that at least she could control, though awful, was not as terrible as her rampant and erratic feelings and somewhere along the way that self-induced pain made her feel she could endure, at least for a little while.

Now here was her daughter behaving, it seemed to her, in similar ways, expressing the agony she once knew so intimately.  She had no words to describe what she was witnessing, but she thought she could feel what her daughter was feeling, the despair, the pain, the fear that if the photograph was not immediately found she might die.  The mother believed this was what her daughter was going through and because she had lived through similar feelings she thought she would be able to help her.  She would provide her with the same sort of safety net she had been given.  A place to land, as it were, a safe space where her daughter could feel comforted, except that the things she said and did, did not provide her daughter with the comfort the mother expected and hoped she would feel.

You see, the mother forgot that her daughter was not a mirror of herself.  The mother forgot the thing that she knew when she gave birth to each of her children – that they were their own unique beings, quite separate and individual from anyone else.  She forgot all of this in her fear and worry over what she was witnessing and imagined her child was feeling and doing.  So she began to look outside herself for answers.  People, many, many people told her that they knew what would help and she listened to them.  These people spoke of her daughter using language all too familiar to the mother.  They used words like “broken,” “disorders,” “pervasive” and likened her neurology to cancer, which to the mother sounded a great deal like what she once thought of herself.  They said her daughter was part of an epidemic and that various methodologies would “treat” her disorder and might even reverse and cure her if done quickly and everyday for many, many hours.  The mother listened to all of these people and nodded her head as these people put into words what she had once believed to be true about herself.

Had she done this to her child?  Had she somehow passed along the worst aspects of herself to this beautiful, innocent child.  Was this some sort of karmic payback for all those years the mother had spent living a selfish, self-involved life?  Was her daughter the direct result of every mistake she’d made?  Was this really how life worked?  She could not believe this, at least not logically.  She refused to believe her daughter was being sacrificed for the sins of her mother.  She refused to believe there was some greater omnipotent power that would cause her daughter so much physical, emotional and psychic pain and yet she was terribly, terribly confused and somewhere she could not fully let herself off the hook.  Somewhere, unconsciously, she believed she was to blame for all that was causing her child pain and turmoil.  And if she was to blame, then she knew she, and she alone must make it right.

(To be continued) contemplation

There Once Was A Girl (Cont’d)

The first part is ‘here‘.

This woman, who was once a girl, learned a great many things once she stopped trying not to feel.  This was a huge surprise to her as she believed she already knew a great deal.  She learned that people terrified her for they were capable of doing tremendous harm and she came to realize she had spent many years avoiding all people as a result.  Most of her pain in her adult life came from the expectations she held and not from the actual people or things they did or didn’t do.  She learned that no one person could ever be all she wanted and hoped for, but that a group of people could.  She learned that a community with a shared goal was more important than individual grievances and that her ego often pushed her from the path she’d chosen.

She met a wonderfully, flawed human and together they had two beautiful children.  With each child her world expanded and grew.  She often reflected on all she’d learned during those terrible years of her earlier life and tried her best to apply what she was learning to her new life as a parent.  But her youngest child, a strong, independent, baby girl who held an uncanny resemblance to her mother had a dreadful time tolerating certain feelings, sensations and the world.  She could not communicate through words and her mother watched her in helpless despair as she saw herself, her early self, her former self reflected in her child’s upset and frustration.  The mother would do anything to take that pain away so her daughter would not have to go through what her mother once had.  The mother would walk to the ends of this earth if it meant she could alleviate even some of her daughter’s massive physical and emotional discomfort.

And so, without even realizing it, the mother veered off the path laid out for her by so many others.  She did not begin using substances again, but slowly over time, she found herself moving away from one of the key tenets of her new life –  she began to believe she had power over another human being’s neurology and that she knew what was best for another.  Instead of helping her child, she began to fight against her child.  She did not think of it in this way at the time.  She thought she was fighting FOR her child and for many years this is what she told herself and others who asked.  She was fighting for her child and it was a noble fight, she would go to her grave fighting, and, by the way, in fighting she avoided a great many feelings.  She did not know this at the time, but in fact this is what happened.  And while she was busy fighting and desperately trying to keep all those messy feelings at bay, her child was hurting and feeling increasingly separate from her mother, (we cannot know this for a fact, but in retrospect the mother sensed this to be true).

More to follow…

Encouraging a Sense of Self Worth

When I was in eighth grade I had a “Wellness” class given by a classmate’s mother who had been a child actor and model.  The boys were separated out and taken to (presumably) a similar class given by a male equivalent. (I have to wonder now, where exactly did they go?  Who was the male equivalent?  At the time, I never thought to ask.)  All the eighth grade girls sat in a circle on the ground in front of this woman who stood before us in all her coiffed, fine featured, perfumed glory, wearing an oh-so-chic, red pants suit (this was the early ’70’s) and looking like she had just walked off a shoot for the cover of a fashion magazine.  (Which, in fact, she had.)

I felt completely inadequate in comparison and all the more so as I sat listening to her glowing accounts of what she did for exercise, the wholesome meals she ate and her disciplined daily use of various emollients.  I remember falling into despair as I listened to her, not only because I didn’t know what emollients were, or couldn’t imagine a life that did not include glazed jelly doughnuts, but because everything about her was foreign to me, forget that hers was not a life I had ever thought about having, let alone wanting.  But as I sat there I was aware that I should want to be just like her.  She represented all that was beautiful and unobtainable and I, in direct contrast, represented all that was wanting.  I’ve never forgotten her.

When I gave birth to each of my children, the one thing I wanted more than anything else was to make sure they never felt ashamed of themselves.  I wanted to make sure they felt supported, loved and valued for who they were, exactly as they were.  I wanted to be sure I cheered them on, to model for them kindness, generosity, compassion and good work ethics.  I swore to myself I would do my best to respect them and to listen to them.  And then we were given Emma’s diagnosis and suddenly those goals took a back seat to the goal of her being “mainstreamed” and “indistinguishable from her peers.”  Those two goals rammed up against my desire for her to feel self-love, self-acceptance, self-worth.  For a couple of years I lost my way.  In my desperation I allowed others to dictate what I should do and what I should want for my daughter.  I forgot that my early goals for her were more important than anything else.

I began to look for an Autistic adult who I could imagine my daughter might be like.  I wanted to find someone who might represent a possibility of what I might expect.  I read what books I could find, written by Autistic adults, but concluded these adults were much “higher” functioning than my child.   It wasn’t until later that someone pointed out these adults who had written and had published books, were at least twenty years older than my daughter and therefore had more than twenty years of learning, experience and growth that my daughter had not had the advantage of.  Undeterred, I kept looking anyway.  Even when I found someone who seemed to have similar language challenges, their upbringing differed greatly, their interests led them in other directions, I could never quite imagine my daughter growing up to be just like them.

Searching for Autistic adults who might be a version of my daughter was grounded in a desire to calm my fears.  It was a misguided attempt to comfort myself.  By saying – well this person is speaking so clearly, able to have their needs known and heard, therefore perhaps my daughter will be able to one day do the same, I was hoping to quell my worries.  A shared neurology with random people does not mean anything more than it does to compare my shared non Autistic neurology with the same. Without meaning to I was replicating that “wellness” class over and over only now it was my daughter I imagined sitting cross-legged on the ground looking up at someone she would never grow up to be like.  This or that person is not an adult replica of my daughter any more than that woman teaching the Wellness class was an adult version of me.

I want and hope my daughter will feel empowered to be who she is without amendment.  The best way I can ensure she feel empowered is by listening to her, honoring her, celebrating and embracing her, exactly as she is in this moment.  I must give her the support she needs to communicate,  show her the different methods she can use to communicate so she knows she has choices and believe in her.  And there’s another piece to this, which is this – my issue of self-worth, with not being that fine featured, delicate nosed, thin hipped, flat chested version of ideal woman I grew up believing meant happiness, is mine to work through and not my daughter’s.  This may seem obvious to many of you, but it is something I must remind myself of.  I have to ask myself often, is this my issue or hers?  Comparing Emma to adults, to any adult is most definitely my issue and it is one I am trying hard not to pass along to her.

2012

The Magic of This Moment

Early this morning:

Nic: I’m late!  Gotta go Mom.

Me:  Okay,  babe.  Have a great day!

Nic:  I love you.

Me:  Love you!  Bye babe.

Emma:  Love you, Nicky..

Nic:  I love you Em.

Emma:  Bye bye

Just another typical conversation, right?

Um no.  No.  Not at all.  Nothing typical about it.  This.  This is why I don’t envy any other family, this is what I treasure about MY family.  This is exactly why, this conversation, this seemingly common, innocent, no-big-deal conversation…. yeah.  Because this conversation has never been uttered before until this morning.  And weirdly Nic and I were talking just five minutes before, while the three of us had breakfast about the importance and magic of being present.  We were discussing how this moment, right now, this second will never be repeated.  We may have moments like it, but this one?  Nope.  Never again.

And as we were talking about all of this, Nic interrupted me and we had the above conversation, the one I’ve just transcribed.  It may seem un-noteworthy to many of you, you may be thinking, so what?  Or who cares?  But to me, this conversation that other families have, perhaps on a daily basis and don’t think twice about, they are little nuggets of pure gold because these moments with my children are gifts, each one of them, pure gifts that I am so lucky to have.

In Buddhism there is emphasis on being present and practice and it isn’t easy.  It’s  a simple concept, but definitely not easy for most of us to actually do.  And yet, when I am able to really show up for this moment the joy is beyond description.

I will leave you with one more snippet.

Later this morning as Em and I walked toward her school, we stopped at a red light.  As we waited she linked her arm through mine.  Not a single word was exchanged.  We waited, a mother and daughter, side by side for the light to turn green and once it did we made our way to the entrance to her school.  As Emma entered the gymnasium where the children and teachers were waiting, one of Em’s classmates called out, “It’s Emma.  Yay!  It’s Emma.  LOOK!  Look!  It’s a cupcake, I love cupcakes!”

And Em looked back at me and grinned before running to greet her friend.

The Cupcake Hat

Balancing Career, Family and Losing Things…

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

 

 

What Makes You Happy?

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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Mistakes Have Been Made and Random Acts of Kindness

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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Posting Under Pressure

I’m working on a post of my interview with Henry and Kamila Markram when I was in Jerusalem attending the ICare4Autism Conference.  Henry and Kamila Markram are the neuroscientist team who created The Intense World Theory For Autism.  I am trying to finish that for tomorrow’s post.  However, Em is up right now and insisting I made cake with her and that takes precedence over this post getting written.   Besides she has a timer which she’s just set for fifteen minutes.  She started with three minutes, but I’ve negotiated for the fifteen, so I’ve got just enough time to post these photos…

Say hello to Walter.  Yup, he’s one of three bucks who lives next to the barn.  And yes, my cousins named him…  Walter, after my grandfather.  Yeah, I know.  It is a specific sense of humor.  And yes it appears it is genetic.

The teepee that has been on the property since the 70’s or maybe even the 60’s, I can’t remember.  I just know it’s been here almost as long as I have been on this earth.

The dogs – Folgen & Gaia – who love nothing more than to have their frisbee thrown to them.  Emma likes it when I throw their frisbee too.  They just don’t like giving it back to me so that I can throw it again.  Which leads to lots of yelling, “Drop it!  Drop the frisbee!”  And then they do this…

And when they’ve had enough running after the frisbee they take it far away and guard it.  Like this.

We have been playing some massive games of Duck, duck, goose and even Granma has started to run when picked.  My brother and sister-in-law are here so  the game has become a nightly event with lots of laughter and shouting, “Hurry, hurry, SIT, SIT!”

Emma waits to be chosen…

Nic has mastered the art of driving the 4-Wheeler and now takes Em around the ranch.

Em takes the Alien swimming

Whew!  That’s it, I’ve got 42 seconds to hit the “Publish” button!

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