Tag Archives: autism acceptance

Awareness Sucks

Today I wanted to do a companion post to yesterday’s “Emma Discusses – Awareness“, with a post entitled, “Emma Discusses – Acceptance”.  I love when Emma tells me to put something she’s written on the blog, because her words are always so profound and insightful.  But once we returned home Em was too tired, so I resigned myself to writing about Autism Awareness and what that means to me.  After all today is World Autism Awareness Day.

A year ago I wrote a  post – Autism Awareness? where I discussed how my awareness regarding autism has changed over the years.  The next day I wrote  – “What I Wish I’d Been Made Aware of When my Daughter Was Diagnosed With Autism“.  After rereading those posts, I then remembered a couple of others I’d written about autism awareness and acceptance, ‘here,’ ‘here,’ ‘here,’ and ‘here‘.  And after all that I just felt cranky.  Seriously.  Just cranky.

I don’t look forward to April the way I once did.  April is a loaded month when many of my friends feel they must hide or cannot look at social media because they know they’ll be triggered by all the calls to “light it up blue,” the hype from organizations like Autism Speaks who seem to do nothing, but speak… it’s exhausting and in the end the awareness they’re pushing isn’t awareness that helps either me or my daughter.   What they seem to call awareness, is to my mind hyperbole, fear mongering and irresponsible.  I’ll be honest, I would be happy if Autism Speaks folded up their little tents and found something else to rant about.

In addition to Autism Speaks’ dire calls for action, the CDC released new statistics – 1 in 68 – and I just groaned because I know how those numbers will be used, forget that they’re almost completely meaningless and actually not an accurate number as Jim Martin explains in his most recent post, 3 Reasons Why Canadians (and Everyone Else) Should Stop Using the 1 in 68 Autism Stat (For Now).  More fear. More anger.  More calls for action.  More listening to people who don’t know what they’re talking about.  More and more and more and more and I just want to crank up Pharrell Williams’ Happy at full volume, put it on repeat and dance.

So in the midst of all the calls for awareness I’m going to hold my daughter close, revel in her presence, sink into my immeasurable gratitude that I get to be her mom and feel the joy in knowing she is a young woman who is talented, funny, creative, wise, insightful, kind, and more forgiving than anyone I’ve ever met. And, boy, am I proud of her.

How’s that for a little awareness?

Emma ~ 2010

Emma ~ 2010

The Magic of Connection

At a certain point during Richard’s radio show  the other night, where he was featuring Moms, he asked me about those years when we were determined to find a cure for our daughter.  I didn’t want to take up time on the show to talk about all of that because there was so much to cover, but also because it makes me really sad to talk about it and I also know it is hard for many of my Autistic friends to hear, two of whom were guests on the show and many more who I knew were listening!  I try hard not to live in regret, but I’ve done things that I really DO regret.  Things I really do wish I could go back and erase and do again differently.  More than anything, all those therapies and bio medical treatments we did, fall into that folder labeled “Things I wish I could do over.”

My reluctance to talk about all of this the other night on the radio wasn’t because I don’t think it’s important as much as it’s really painful to talk about and I know, for many of my friends, people I love dearly who happen to also be Autistic, it is very painful for them to hear me talk about those years, all those years when I was so intent on curing my daughter.  It may remind them of their own upbringing.  It may bring up all those devastating feelings of being unworthy or that they were somehow damaged or diseased, or any of the other hurtful words people use when discussing autism, that hurt them.   So to my Autistic friends, please skip down to the final paragraph.  The last thing I want to do is cause more pain and suffering to those I love.

At the time, after Emma’s diagnosis was given, I believed autism was something that could be “treated” the way one treats a disease.  Only it isn’t a disease.  But at the time I thought things like vitamin supplements , homeopathic remedies, therapies like ABA and diets could actually remove the “autism”, that these things would somehow transform her brain from an Autistic brain to a non Autistic brain.  I know it may sound over the top, even ridiculous to many, but at the time, I wanted to believe and so I bought into the idea that autism could be ‘removed’.  The concept of someone being pressured into learning to “pass” as non Autistic and the massive emotional and physical toll that inevitably takes, was not something I knew about at the time.  It never occurred to me to wonder what the fallout might be or how my own child’s self-esteem might suffer as a direct result of what I was doing and saying.

Over time, as I kept trying different things, which culminated in going to Central America for stem cell treatments, I continued to believe, being the very best mother I could be, meant doing everything I could to “remove” her autism.  I believed all those words that are used to describe autism: disease, affliction, epidemic and crisis.  Autism was BAD.  Autism meant all kinds of things and none of them were positive or beneficial.  So that’s what I pursued – a cure.  And I pursued a cure with the same dogged persistence I now apply to changing how autism is viewed by others.  Where I once was determined to change my daughter, I am now determined to change society’s views of autism and, it must be added, society’s views of Autistic people.

You cannot talk about autism without talking about Autistic people.  Yet people do all the time.  They talk about autism as though their words will have no affect on those who are Autistic.  But you can’t do that. When we talk about autism we ARE talking about our Autistic children.  We ARE talking about our Autistic friends.  We ARE talking about Autistic people.  What we say, how autism is depicted, DOES impact those who are Autistic .  It does directly affect how others then treat them.  To pretend that all the derogatory language used has no direct effect on Autistic people is ignoring that fact.  And this is where all of this no longer is just about my daughter and the risks I took and the impact my actions have had on her.  This is about something far bigger than any one person.  This is about a segment of the population who are Autistic and the fallout they must cope with from all of us talking about them as though it wasn’t about THEM, but instead was about a word – that word being – Autism.

Toward the end of the radio show, Lauri Swann spoke of how her son, Henry developed a relationship with his mentor Tracy Thresher and how transformative that was for him.  I reflected on how magical it was for Richard, Emma and me to visit Lauri and her family during the screening of Wretches and Jabberers this past April.  We reminisced about the evening before the screening, when we all went back to Lauri and Russ’s home and everyone sat around their dining room table typing to one another.  The only word I could come up with to describe that visit was “magical“.  And it was, because like the Autcom conference last fall and the Syracuse conference this past winter, being in an atmosphere of inclusion, where every single person is treated with the same respect as anyone else, where all are treated equal, is magical.  How did we move so far from those words in the Declaration of Independence ~ “We hold these truths to be self-evident, that all men are created equal”?  How did we get to this other place, where an evening like the one I’ve just described is considered out of the ordinary?

Now, sitting here writing this post, I am thinking about two more magical days and evenings when Ib came to New York City and stayed with us.  Ib is like family.  My children adore her.  My husband adores her.  I feel honored to know her, let alone call her my friend.  I don’t know how to talk about all of this when lines are drawn, when words are used that separate and divide.  I can’t do that and I don’t want to live in a society that does.  What people do not understand fully, or cannot completely appreciate, is this – when we stop dividing people into categories of us and them – we open ourselves up to the experience of being united, of really feeling that indescribable magic of connection.   The beauty of belonging.  The joy of interacting with our fellow human beings and rejoicing in our diversity.  There IS magic in that.  This is what I wish all human beings have the opportunity to experience.  This is what I hope I will live long enough to see occur on a grand scale.

Henry & Tracy during our magical visit with Lauri’s family

Henri & Tracy

Adrianna, Amy Sequenzia, Em & Me
Adrianna, Amy, Em and Me

Nic & Ib on the High Line

Nic & Ib

Having it All Often Means Doing it All

*The title of this post is said in a joking, not exactly sarcastic way, but certainly not in a serious way.  Throw in an eye roll as you read and a knowing grin, and you’ll get it!

So much to tell you, but where to begin?

For Mother’s Day my wonderful husband decided he would interview me on his radio show and asked if I wanted to invite a couple other moms to come on  the show too.   “Yes, please!” I said and promptly invited my friends, Ibby Grace of the blog Tiny Grace Notes (AKA Ask an Autistic), Paula Durbin-Westby, who has two blogs, one with her name as its title and the other – Autism Acceptance Day (which is a terrific resource filled with interviews among other things) and Lauri Swann Hunt of the fabulous website and blog Ollibean, where both her son Henry and Amy Sequenzia often post among many other wonderful writers.  The show aired last night at 8:30PM – 10:00PM Eastern Daylight Savings Time and has been archived ‘here‘ for those who would like to listen.  We do not have a transcript of it yet, but my fabulous friend Alyssa of the blog, Yes, That Too, suggested we break it into ten minute chunks, which means we need eight more people to volunteer.   Anyone who is so inclined can contact me here or at emmashopeblog@gmail.com and we will get a transcript written!

I meant to write a post about all of this yesterday so anyone who wanted to listen live, could, but Richard came down with some sort of stomach bug that kept him up for the better part of the night and Em woke up in the middle of the night complaining of a sore throat.  When I went to her she was burning up, so I stayed with her for the rest of the night.   By yesterday morning, which was also the first day of my “play date with jewelry” trunk show, I realized, I was not going to be able to keep all the necessary balls in the air.  It was that moment when you realize the reality and what you had envisioned, were not meshing even remotely and so priorities needed to be set.  Nic, who was off early to go on a three-day field trip, made it out the door without mishap.  A doctor’s appointment for Em was secured. Joe, Em’s devoted, dedicated and all around amazing therapist, was called in for reinforcements. Richard was checked in on and given liquids between preparations for my trunk show.

By the way, the show continues today, for those who might be interested in playing with jewelry and seeing my Transitions Collection, which I’ve finally gotten up on my Ariane Zurcher Jewelry website, and joining me to play with the real thing and so I can give a live demonstration of all the various possibilities, many of which the website does not yet have or do.

AZ jpg evite

So given that the day was not proceeding as optimally as planned, it was kind of fitting and perfect that Richard, albeit, groggily, insisted that the radio show (dedicated to motherhood and all that entails) must go on as planned!  So it did. And other than a couple of minutes when Richard and I were inexplicably tossed out of the show, it was great fun, everyone was wonderful and I think Paula Durbin-Westby may need to seriously consider hosting her own radio show in the foreseeable future!  As I said at the end of the show, it is these Moms and women like them, who have helped me be a better mother to both my children.  I am so lucky and very, very grateful.

Merlin Assists in Preparing for the Trunk Show

Merlin:Jewelry 

Be the Very Best YOU, You Can Be

There’s a great deal of talk about acceptance regarding autism this month, which is a wonderful shift from all the talk about “awareness”.  As I think more about acceptance I am aware of how often I think about “embracing” as in embracing all that each of us is, without trying to mold ourselves to be something we aren’t.  What if instead of doing everything in our power to force our autistic children to behave like some imaginary and impossible non-Autistic version of themselves, we instead encouraged them to be the very best Autistic them they could be?  The same way we do everything in our power to help our non Autistic children be the very best they can be.

Isn’t that what all of us are trying to do?  Aren’t we all trying to be the very best we can each be?  So what does that look like, how do we do that?  Well, by recognizing what we’re good at, for starters.  One of my brothers is an astrophysicist and the other is a micro-biologist.  My mother was a chemist, my father a financial advisor and I don’t have a “science-y” gene in my entire body.  In college I did everything in my power to avoid both science AND economics.  These subjects are of no interest to me.  Were someone to tell me, well, you know, your most successful same age peers all love and excel at these topics, therefore you need to apply yourself more to them, and I was then forced to take these classes and was not allowed to pursue my love of art, drawing, design, literature and writing, I would be miserable.

I don’t want to spend my life crunching numbers, looking at stock portfolios, and peering through microscopes.  None of that interests me.  Hand me a book on quantum physics and I fall asleep.  The only good that comes from giving me books like that to read is the money I save on unfilled Ambien prescriptions.  I will never be, nor do I want to be, a scientist or economist, I accept this fact completely.  I don’t feel ashamed by my lack of interest.  I don’t feel this is something I should feign interest in.  I have other interests and talents; I focus on those and am very happy.  That’s what we all do.  We avoid the things we aren’t so great at, and often have little interest in, and focus on what does interest us and where our talents lie.  If we were lucky we also had parents who encouraged, supported and cheered us on in pursuing those interests.

Why should any of this be different for our Autistic children?  I don’t want Emma to try to be someone she isn’t.  I want Emma to be the very best Emma that she can be.  Which means I need to support her interests and help her find the best way to communicate.  Verbal language is tough for her, typing seems to help her access a part of her mind, that verbal language cannot, so we are doing all we can to support her typing.  How she communicates is not as important as that she be able to.  She loves to perform and sing loudly, so we have a variety of microphones and an amp that she can use to hone her singing skills.  She loves her books, so in between reading her favorite Miss Spider book, I am teaching her about arachnids, what they eat, how long they live, how many legs they have and how they spin webs.  Spiders are actually kind of fascinating. Even though Emma loves the Miss Spider books because one of them includes an electrical storm (lesson plan coming on that topic soon!) and Miss Spider has a great many big emotions, which Emma likes to act out, complete with wringing her hands and pretend tears and cries of anguish, there are a great many topics I can piggy back on, to teach her about things like – the weather, electrical storms, any and all big emotions, pretend and real, etc.

I want to encourage her to explore all of these things and more.  Last night she wanted to watch a really bad movie that she’d seen her brother Nic watching about a two-headed shark who attacks a group of teenagers.  And despite my misgivings about the content (and just awful quality of the movie in general… The acting is phenomenally bad, the shark is the best thing in the movie) it was age appropriate and I figured I could turn it off if it got too gory and awful.  There was a great deal of emoting and blood curdling screams, which Emma thought hilarious.  She kept saying, “Watch out, the shark is going to come and eat you!  Oh no!  He’s going to bite your arm off!”  Then she pretended to bite me.  Bad movie, great time was had by all AND I now have another lesson plan I intend to create regarding sharks!

Be the very best YOU, you can be.  Now that’s the kind of acceptance I can get behind!

Why? I Want to Understand…

I’m one of those people who, when told to do something that doesn’t make sense or that I can’t figure out the reasoning behind the request, questions it.  I don’t mean I think about it, while silently complying.  I mean I question the thinking out loud as in, “Why are we taking 8th Avenue, when we could take 10th?” or “Why are they asking for the last four digits of my social security number when I just gave them my passport number and anyway it’s a domestic flight?” or “Why take the ice out first when we could just put everything on top and then scoop ice around it?” or any number of other questions that so easily slide from my brain to my mouth before I can stop myself.

I can’t help myself from asking, “Why?”  By the way, I am also married to someone who does the EXACT same thing.  Some people would call this controlling or being defiant, but I see it as a need to understand the reasoning.  Sometimes when someone explains to me their reasoning, I get it, it makes sense and we can carry on, even if I don’t agree with it.  But many times the person explains their reasoning, it still makes no sense and that’s when things get problematic.  It is at this point I have a couple of choices, I can comply, do something that makes no sense to me, which is physically painful, it literally hurts to do whatever it is or I can refuse to do it while explaining why I cannot or I can ask for further clarification.  I tend toward the last two options.  I’m all about clarity.  I’m really not trying to cause problems or be difficult, I really am interested in understanding another point of view.

There are other questions I have that have nothing to do with any requests being made of me, but the answers affect me or someone I love.  Which brings me to a question that’s been very much on my mind recently.  It’s a question that has nagged me since I read Lydia Brown’s piece – Protesting Autism Speaks  on her blog Autistic Hoya – why don’t people who say they care about Autism want to hear from Autistic people directly?  I’m actually being very serious with this question.  I want to understand the thinking behind this.  Because, you see, when I finally found Autistic people who were writing blogs, I felt like I’d hit the jack pot.  When I read Julia Bascom’s blog Just Stimming it was like a beautiful universe unfolded before my eyes.  When E. of The Third Glance reached out to me that first time I read her comment and literally wept with gratitude.  I think I read her comment a dozen times.  When I met Ibby of Tiny Grace Notes at the Disability Conference in New York City, she may as well have been the President of the United States, I was so thrilled.  When she flapped because she was excited to meet me, I felt so completely flattered, it was all I could do not to jump up and down with unadulterated excitement.  I felt profound relief because:

1)  they are Autistic adults and until I found them, I personally knew none
2)  they were describing their thought processes, their experiences, their lives and it gave me insight into how my daughter may be processing the world too
3)  they introduced me to concepts I’d never considered, such as: Presuming competence and not speaking about my daughter as though she couldn’t understand, including my daughter in decisions that affect her and not speaking for her.
4) The whole idea of being talked about as inferior, as a deficit, as a tragedy and how that directly affected their self-esteem.  This last seems so obvious in retrospect, but it was something I hadn’t considered.
5) Having relied on other parents and so-called “autism professionals” up until my daughter was 10 years old, I was incredibly grateful to meet Autistic adults who were able to explain the experience of being autistic first hand. Their experience has helped me help my daughter more than anything else I’ve read or been told.
6) Many of the autistic adults I now know aren’t that much older than my daughter and I found it comforting to know there is a whole community that she may one day choose to join.

I do not read or speak with my Autistic friends and assume they are speaking for Emma.  I don’t assume Emma will grow up to be just like Julia or E. or Ibby or Chou Chou or Paula or Amy.  Each of these women has helped me help Emma far more than any “autism professional” has.  The Autistic men and women I know give me hope.  Hope, not just for Emma, but for ALL our children.  Hope for our world and our future.  I feel grateful to them.  I’m profoundly grateful that they’re blogging, speaking out, protesting, reaching out and asking to be heard.  Maybe one day my daughter will be among them.  I would hate to think that Emma, having worked so hard to communicate, in whatever way that may be when she’s an adult, having worked up the courage to ask a complete stranger, “Want to hear from me?  Want to hear what I have to say?” would be answered with silence or an abrupt “No.” I cannot imagine how painful that must be.  I cannot imagine what that does to one’s sense of self to be met with such outright hostility.  And I don’t understand why.

I am seeing that my experience is not the experience of others.  I do understand that, but why?  Why don’t people see those who are Autistic and can communicate, whether by typing or speaking , as a good thing, as a hopeful thing?  Why is it that some parents don’t want to hear from Autistics who can communicate?  What am I missing here?  Really, I want to understand this.  Help me understand.

How could you NOT want to hear what she has to say?

Autism, Acceptance And Love

My friend Shannon Des Roches Rosa posted a great piece regarding understanding acceptance on Thinking Person’s Guide to Autism the other day. I wanted to write a comment, but had to think about what she’d written and then wrote a long, epic length, rambling comment, so lengthy that when I went to submit it I was informed I’d “timed out” and lost the whole thing.  But it got me thinking…

Whenever I think of acceptance the “serenity prayer” comes to mind – “…grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”  This prayer was what I repeated to myself each and every day for years after we were given Emma’s diagnosis.  “Courage to change the things I can” was what I clung to as I doggedly pursued treatment after unproven treatment.  One of the single biggest stumbling blocks for me in accepting my daughter’s “autism” (I write it this way, because this was how I thought of it, as something separate from her) was that I believed it was within my power to change her autism.  I thought I could remove it.   As long as I continued to hold onto that belief, I couldn’t accept her autism or the idea of her as an Autistic individual, she was Emma who was diagnosed with autism and therefore, my thinking went, could also be diagnosed withOUT autism.  These two points were key in my thinking.  Anyone who suggested I not think of my daughter and autism in this way were disregarded.

I no longer think in these terms.  But I read the often heated exchanges between parents who accept autism and their Autistic children, and those who maintain they accept their child, but do not accept autism.   Interchange the word “accept” for “love” and things start getting really volatile.  None of us welcome anyone who suggests we do not love our children.  And truthfully, this is where, I think, the disconnect happens.  I think this is less about love and more about having a different understanding of what Autism is.  If autism is seen as completely negative, (something Autism Speaks has perfected to a science by using words such as, affliction, epidemic, crisis and tragedy) this horrible thing that causes my child to writhe in agony, an “affliction” with no redeeming qualities, coupled with the belief that autism is something that can be removed, in fact has been removed by many parents who have gone on to write memoirs about their triumphant courage to change the things they can, then what parent wouldn’t welcome their child relief from that?

But if Autism is seen as something complex, woven into the very fabric of a human’s being with a wide range of attributes as well as challenges, all of this becomes far more complicated.  It was this idea, so beautifully described in eloquent detail by Julia Bascom in her blog Just Stimming that made me pause.  Her description of the challenges and joys of being Autistic were what made me stop and reconsider everything I thought I knew and believed.  As long as we hold to the view that our child is locked inside a seemingly impenetrable shell called “autism” while listening to that seductive, whispering voice assuring us that we can break through that shell if we just try x, y, and z we will struggle mightily with the idea of acceptance.

Emma – 2002

A Fantasy for Parents of Newly Diagnosed Autistic Children

I wrote about some of these ideas before in the Fantasy For Autists post a couple of weeks ago.  This is a follow up post, a fantasy for parents of newly diagnosed autistic children.

When Emma was first diagnosed I felt fear more than any other emotion.  It was overwhelming and crushing.  The word “autism” carried with it a weighty sense of doom.  People have described it as akin to receiving a “life sentence,” it was a word I knew almost nothing about, and what I did know wasn’t good. “We don’t know what causes it,” “There is no cure” were the words we were told many, many times by the various specialists we went to, seeking help for our beautiful, happy, fiercely independent daughter.  Those words were said matter-of-factly, but the grim set of the lips by those who spoke those words belied the truth, it seemed.  Some specialists would follow those words with a sad shake of their head, often done while uttering, “I’m sorry”  as they ushered us out of their office.  The doctor’s appointment now over, we were left standing alone, confused, terrified and overwhelmed by what we could not understand, by what could not be explained, by what seemed like a dark cloud enveloping every aspect of our lives.

Then there were the depictions in the media of the devastated families struggling to make ends meet, the scary images of the perseverative, stimming children in full meltdown, family members run ragged, siblings, silent and resentful, spouses angry and argumentative, and the autistic child, always somewhere in the background, seemingly oblivious to all the chaos they supposedly had created within, what would otherwise have been, the perfect American family, had they not been born.  While this may help with fund raising by preying on people’s fears and pity for those less fortunate than themselves, it is these depictions that the newly diagnosed child and her family will see.

Can we take a moment and consider how these depictions make the newly diagnosed child feel?  What message is being sent?  This child that everyone is so sure isn’t picking up on any of this, but perhaps is.  What if that child understands a great deal, even at the young age of a year and a half ?  What if that child is extremely intelligent and feels the overwhelming sadness their very existence seems to be causing their family?  What if these feelings are then intensified by the things that are said between family members in front of the child or within hearing distance of the child?  How would this affect the CHILD?  Think if you grew up feeling you were a mistake, damaged and broken?  What if the words that were used about you and to you were said with anger, exasperation and annoyance?  What if instead of being given the help you so desperately needed, you were told that the things that helped you concentrate and focus were wrong?  What if you were told almost everything you did was wrong?  Would that help you do things differently?

These negative images are also what will flash through the minds of the parents as they are given the “dreaded” diagnosis.  Listen to any newscast about autism.  The way the news anchors say the word – “autism” – the voice lowers, there is often a hesitation before the word is spoken.  Look at the statistics, the alarming statistics that cause everyone to feel frightened, because we know so little, so we fall into fear, fear of the unknown, fear of what might be, fear of the future, fear of the present, fear.  Is all of that fear helping any of us?  Does fear help us as parents do a better job parenting our autistic children?  Does the fear give you patience, does it help you when your child is unable to express themselves and so acts out?  Does that fear make any of us behave better, more appropriately?  Does the rampant fear help us sleep at night?  How’s all that fear working out for you?  Does it help?  And if you think it does, I’d love to know, how?

But what if this was not the way families were introduced to autism?  What if instead of sitting with the sympathetic, yet professionally aloof specialist the family was introduced to a group of self appointed adults, all of whom were autistic. What if these adults were verbal and nonverbal, women and men, spanning a wide range of ages?  What if each Autist “spoke,” whether through language or by typing or through a voice activated device?  What if the families were able to ask questions and were allowed to approach these Autists and even were able to have one or two or more assigned to them, the way a social worker is now, during Early Intervention?  What if those Autists were available to the family and their autistic child?  What if these were the people the family could turn to when they had questions, needed help finding resources, schools, methodologies or just wanted to check in with someone who might understand their child better than any pediatrician, psychologist, developmental pediatrician or neurologist could?

What if each Autist was given an opportunity to discuss what it was like for them growing up, the things that helped, the things that didn’t?  What if those Autists discussed how to teach life skills?  What if each family went away from this initial “welcoming” meeting with a folder that included a handbook written by Autists, a list of resources of Autistic doctors, neurologists, pediatricians, Autistic run schools with curriculum approved by Autists and others designed by Autists, and a list of  some of the essential things parents need to know and remember as they help their autistic child live and thrive?   What if, instead of being bombarded with frightening stories of self injurious nonverbal children we were shown videos of nonverbal Autists helping those children learn how to cope?  What if we were shown videos and news programs about all the Autistic adults who are pursuing their passions?   What if there were Autistic lawyers, neurologists, accountants, pediatricians, veterinarians, Occupational Therapists, Speech Therapists, Teachers, Educators, Head Masters, scientists, musicians, singers, performers, painters, writers, that we were all exposed to and knew about?  How would this change how we viewed our own children?  What if we were given the support we needed to help our children reach their potential without sadness, fear and pity?  What if?

My wish for Mother’s Day is that one day this will no longer be a far-fetched fantasy, but will be a reality.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

A Letter to You (who wrote – “I Wish I Didn’t Have Aspergers”)

You are beautiful.

It doesn’t matter that we’ve never met.  It doesn’t matter that you do not know who I am.

You are beautiful.

You are beautiful exactly as you are, at this moment, no matter how sad, how angry, how confused or lonely you may feel, you are beautiful.  We live in a world and in a society, which fears that which it does not understand.  The majority of those people are different from you.  That does not make you wrong or bad or any other derogatory word that you may have heard directed at you, it simply makes you different.

You are beautiful.

There are others, others who are similar to you who also inhabit this world.  My daughter, Emma is one of them.  Emma is ten.  Emma does not know what google is or if she does, she cannot communicate that she does.  She, like you, is wired differently.  Emma is autistic.  She has many challenges.  There are things that are much, much harder for her to do, like reading and writing and speaking.  She has lots of sensory issues that cause her tremendous discomfort and even pain, but there are other things that are easy for her.  She is honest and full of love.  She is without guile, she does not bully or condemn, judge or gossip.  She is without inhibitions.  Emma loves music.  I think music speaks to her in a way that conversational language cannot.  When she dances to her favorite songs she becomes an extension to that music.  She incorporates it into her being and it brings her tremendous joy.  She is a free spirit and her beauty emanates from her without censorship.

She, like you, is beautiful.

Find your place in this crazy world.  Speak out and while many may not want to listen or may even try to silence you, do not let them.  Do not remain silent.  Add your voice to the chorus of others who are here with you, who are like you, who also have Aspergers.  Say what you feel.  Say what it is like to be you.  We need your voice, I need your voice.  My daughter cannot tell me these things, so I listen to others who are like her, but who can speak.  Each one of their voices is beautiful.  There are many, many people, like me who want to hear from you, who want to listen.

You are beautiful.

If people say things to you or about you that are cruel and hurtful, do not believe them.  Their words are not a reflection of you, they are a reflection of them.  There are many sad, angry, troubled people in this world who hurt others because of their rage and sadness.  No matter how much they may want you to believe that you had something to do with their unhappiness, you did not.

You are beautiful.

Someone typed into google – “I wish I didn’t have Aspergers.”  From that google search they found the blog Outrunning the Storm, a blog written by a mother of an  Aspergers child.  A number of bloggers got together and reached out to many of us, asking that we each write something, which will be posted on the newly created – AutismPositivity Day Flash Blog.  The above is my contribution.

For my latest piece in the Huffington Post – Running With Mermaids

To read Emma’s profile in The Thinking Person’s Guide to Autism, click ‘here.’

Autism “Awareness” on Huffington Post

The following post has just been published on Huffington Post.  This piece is important to me as it is the introduction to four or five subsequent posts I am planning for the entire month of April, written by autists.   April, for those who may not be aware, is “autism awareness” month.  These autists who will be writing posts for me to submit are the voices that have changed my life.  These are the voices that, because they’ve changed my life are changing my daughter’s life.  These are the voices that are NOT being included in all the fund raisers for “Autism Awareness.”  How can we possibly hope for awareness if autists are not being included?  Please help me by sharing the Huffington Post link (here it is again, in case you missed the first one) through email, facebook, tweets, share it, comment, please, please comment, even if it’s just to say, “I read this” and send the link to as many people as you can.  We need these posts to go viral.  And I need each and every one of you reading this to help me.  Please.

Let’s change what “awareness” means.  With your help we can.

For those interested, this is Paula Durbin-Westby’s blog, one of the autists who has agreed to write the first piece to kick things off for the Huffington Post.