Author Archives: Rachel Kenyon

About Rachel Kenyon

Rachel Kenyon is an Army Wife, Aspie, Advocate and mom of two beautiful babes - The Boy (10) and RM (7). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. Rachel's husband is an Active Duty Sergeant Major (SGM). They hold their home together with love and duct tape somewhere in the suburbs of Connecticut.

The Grocery Store: Take Another Look, Asshole

This is my daughter.  She is autistic. And let me tell you, she is F-ABULOUS.

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This morning, I read THIS post by Matt Walsh and WHOA – it was delightful to say the least.  Because one human being took the time to school another human being (we’ll call him “Asshole”) on the gross stupidity of making a comment like: “Man, some people need to learn how to control their f**king kids.”  In a grocery store.  Like, as if, the grocery store wasn’t torturous enough for kids and grownups with kids, Asshole had to share his clairvoyant perspective on the situation.

Way to go, Matt Walsh.  Your children are blessed to have you.

So I will take the liberty of adding this dimension to Mr. Walsh’s encounter.  Our dimension.  Our encounters with Asshole at the grocery store.  You see, every day my baby girl steps outside our door into a world that doesn’t quite understand her yet.  Where stares and whispers and outright insults assault her everywhere she goes.  Like in a grocery store when she is simply overwhelmed by the lights, noise, crowded aisles, or having to wait in the deli line for a slice of heavenly cheese.  Who knows what any child in a grocery store is flailing and wailing about?  You don’t, Asshole.  You just DON’T.

And so my daughter walks this world a target for Asshole and those like him.  She is target for gross misinterpretations and judgments of not only my parenting ability, but her intelligence.  Because commentary like above can not only be that bad, it can be so much worse.  So much more hateful.

My daughter can hear you, Asshole.  She understands every crinkle of your nose, every look of pity and she knows that your condescending tone of voice is more about your insecurity and discomfort than it is about her communication barriers or tantrums in the grocery store.  So whether you are claiming to judge me or my parenting style, you are really judging a seven-year-old child.  And that really makes you an asshole, Asshole.  And anyone like you who judges by first glance alone and dares to assume why a child is having trouble in a grocery store, or a park, or a mall, is not far from the kind of asshole that uses the R-word.

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And seriously.  The F-word is so much more appropriate.  Does this child look anything other than F-ABULOUS?

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My daughter may have challenges that are unique to your own, Asshole, but she isn’t complaining.  She is overcoming.  She hears the conversation and she is saying I AM WORTHY.  Behind her and so many others you don’t take the time to see, Asshole, are parents who love these children and are sticking by their guns in those grocery store aisles because every day is a battle.  A battle to teach and love and have patience.  A battle to overcome you, Asshole, and your judgy stares.

It is people like Matt Walsh that are changing the world every day with their WHOA – NO YOU DIDN’T courage to stand up to you, Asshole.

Each day WE step outside our door and into the world, WE are asking you to embrace US.  WE are expecting greatness of heart from YOU.  WE are expecting nothing less than what we all yearn for on this earth.  Love and acceptance.

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Even FOR you and FROM you, Asshole.

That mother in the grocery store was FABULOUS.  Mr. Walsh was FABULOUS.

You, Asshole, have some growing and changing to do my friend.  And then maybe others with call you Fabulous, too.  And then we can all hang and be fabulous together.  Like it should be in this world.  A whole lot of FABULOUSNESS.

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This is my daughter.

She is autistic.

Go ahead and drop the F-bomb, y’all.  Because she is F-ABULOUS.

What will YOU be?

 

 

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I Will Even STARE. How’s THAT?

So many times, especially as parents to autistic children, we hear the words “eye contact” in a way that suggests they were written on the tablets brought down by Moses himself.

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Looking people in the eyes while having a conversation is great, but if you continuously demand that of someone who is predisposed to feel uncomfortable in doing so, it can on occasion result in the truly gruesome side effect of AWKWARD STARING.  Or, far worse, it can set up an individual for failure and lead to negative feelings of self-worth.  There should be no form of correction or reprimand regarding eye contact when an autistic person is boldly making the attempt to communicate with another person in the first place.  And in no other disability population do we literally demand eye contact and hail such as the benchmark of progress.

staring

Not only are Autistics expected to purposefully stress their already overwhelmed sensory systems by making eye contact, it is done with the expectation that it will somehow make autistic people better at listening and communicating.  That is simply absurd.

I am DAMN GOOD at eye contact.  I am so damn good that I can win a staring contest.  With myself.  And I am fortunate that no one harped on me all throughout my life to make eye contact.  It just so happens that I developed this awesomesauce skill all on my own without even knowing it.  Because I AM AWESOME.  Really, because I was observingEverything.  I knew I had no earthly idea what was going on most of the time, though I didn’t know it had a name, so I observed intently.  And I mimicked what I thought was acceptable and popular through watching others while they talked.

So after 38 years and counting, I don’t just make eye contact like an amateur.  Oh no.  I stare.  I will stare at your eyes, your mouth, your teeth, your hairline, your earrings, that big honking zit one centimeter to the left of the five freckles just due south of your right eye.  (Sorry.  But no worries, seriously.  Because I am the LAST person to judge, I am merely studying you so that I can be better at being me.  Take it as a compliment!)  So I am a champion at staring.  You will think I am making eye contact the entire time and you will feel good that I am listening intently to what you have to say.  And I am.  Honest to God, I am listening.  I am listening with my ears, eyes, nose, and I am listening with every scratch or pick of the skin on my left ear and every crackle of my toes inside my shoe. DEAR GOD. I am listening with the distraction of my own heartbeat pounding in my neck.  I do all of this so that I can listen.

For me, making eye contact, or at least staring intently somewhere in the vicinity of your eyeballs, is a lot of work.  There are times I physically CANNOT make eye contact during situations when I feel extremely stressed, uncomfortable, or threatened.  (Sometimes I cannot speak either, but that is for another post.)  It truly concerns me when I hear this commandment that autistic individuals are simply not functional if they are not making “the effort” to make eye contact when someone is speaking to them.  I wholeheartedly DISAGREE.  For some, not making eye contact is the only way they can listen to what another person has to say.  It is different for everyone.

I do, however, support a gentle approach to assisting autistics to improve their ability to make eye contact only if an individual has the desire to try, to connect using the eyes, as a means of reciprocal communication skills.

Eye contact is important in society because non-autistic interactive human beings have evolved into complex communicators.  But that doesn’t mean we make eye contact the Gold Standard of success for autistics.  It certainly cannot be assumed to be a benchmark of intelligence, or listening skills.

Some people will look you in the eye.  Some will stare.  Some will stare with an awkward flair.

Just remember, there are so many more ways we listen and take in information - with our ears and our hearts, with taste, touch and smell.  Most importantly of all, we listen with open minds.


Dave Matthews Band “So Much to Say”


Coming Home: Dear Unknowing Husband

Wow. You really didn’t know what you were signing up for there, did you?

I mean, I didn’t either when I married a soldier so I guess all’s fair here, but still.

I love you.

It’s been hard.  But mostly it’s been far better and happier than I can imagine it would have been for most marriages under these kinds of circumstances. We’ve weathered and even made the very best of a blended family, two deployments, 4q Deletion Syndrome, in-laws, autism, The School District of Oz, feeding tubes, surgeries, a cozy yet dilapidated house that needed everything, life-threatening illnesses, TRICARE, Congress, and an Aspergers diagnosis for me. For the sake of reasonable use of time here, I’m leaving out a bunch of stuff that would seem huge to many people but are actually trumped by the aforementioned list of holy-crap-ness.

Through it all, I have had to put many of my own interests and pursuits on the back burner.  Things like friendships and activities I used to like to do.  Since the Aspergers diagnosis, it makes a lot more sense to me now why I couldn’t manage to maintain friendships throughout all of the chaos of our life together.  For that matter, it now occurs to me why I couldn’t maintain a burning passion for anything more than sleep.  So I sit here and wonder, how much do I resent your fortune to pursue your own interests, or is it that I resent not having the energy left at the end of the day to pursue you?

I love you.

Knowing now the workings and unlocking the deeper mysteries of how I think and feel and how I see the world has been such a blessing. Though along the way I have hurt deeper than I knew I could, lost more than I thought was possible, I find that each day I am closer to feeling even more at peace in my own skin.  I am feeling more confident in what makes me spectacular and more in control of that which used to create fear within me.  But in some ways, some days, Aspergers makes me feel so vulnerable and so lonely.  You bear the burden of that, My Love.  Because you are my everyday hero.  You are my strength.  You are my best friend.

I love you.

I want so desperately to do better.  I know I am the mother I want to be.  I know I am the partner I want to be.  But I so very desperately want to be a better wife and friend to you than I have been.

 

 

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I want to feel more than just comfortable at the end of the day and ready for the quiet of dark and escape of sleep.  I want to look forward to touching shoulders with my husband and coming home to where I belong, in your arms, in your heart, each and every night.

I love you.

 

 


Autistic Shibboleth: The Secret Handshake of the Adult Aspergian

[UPDATED 8-12-13, @ 09:58am]

  • Definition of shibboleth (n)*

shib·bo·leth

[ shíbbə lèth ]

    1. catchword or slogan: a word or phrase frequently used, or a belief strongly held, by members of a group that is usually regarded by outsiders as meaningless, unimportant, or misguided
    2. common saying or belief: a saying that is widely used or a belief that is widely held, especially one that interferes with somebody’s ability to speak or think about things without preconception
    3. identifying word or custom: a unique pronunciation, word, behavior, or practice used to distinguish one group of people from another and to identify somebody as either a member of the group or an outsider

The origin of Shibboleth is actually biblical.  [It can be found in the Book of Judges, Chapter 12, verses 1-15.]  In layperson terms, it was a code word to prove your identity in gaining passage across the Jordan River.  If a person was asked for and responded with its incorrect pronunciation, that person was slain as an enemy.  For it was believed that only those who held the true faith and protection of God, would pronounce the Shibboleth correctly.

So I ask.  What is the Shibboleth for Autistics in our world today?

What is the correct word, or symbol, or advertising slogan we must use to correctly identify ourselves in this world without fear of persecution or rejection? Because ribbons and puzzle pieces just do not seem to be the Shibboleth we are looking for.  Lest we forget that the DSM-V is not our Shibboleth.

Who gets to decide if I am representing the Autistic Shibboleth correctly?  What is the punishment if I don’t?  How many friends need to turn their backs to me before I can correctly communicate Shibboleth?  Will there be a ceremony like in “Animal House”?  Thank you, Sir, may I have another?

Am I expected as a high-functioning adult with Aspergers to throw my HIPPA rights out the window and fork over my diagnosis to the public?  To include the part from the interview about being molested by a relative because I clearly didn’t understand at the time what was going on?  How about my issues with sexuality and gender?  Should we just begin an open dialogue now of how I was nearly killed by domestic violence in my early 20′s?  Or should we have tea first?

Exactly what is the Autistic Shibboleth that I can shout from the rooftop so that the non-Autistics in the Autism community can verify my credentials and the Neurotypicals on the outside of A-town can go ahead and believe that I am an Other?  Because I have to tell you, not one of My People has yet to say, “Are you really sure you have Asperger’s?”

Here is what I consider my Shibboleth:

Because on my very first outing as an official Aspie, I was honored to spend an evening in New York with two amazing families and their friends – The Paris-Carter Family and The Robisons, Ms. Kirsten Lindsmith, and Mr. Alex Plank – at a play entitled “The Laramie Project”.  I was the first to arrive in the lobby of the theatre. I was terrified.  New place.  New people.  All by myself.  So I went up to the ticket window and politely asked the woman there if she could spare a rubber band.  She looked a little puzzled and I am sure there was some snarky giggling, but when I explained that I had Asperger’s and was waiting to meet several new people and I was nervous, the rubber band would help calm me, she smiled and the rest of the folks in the lobby all smiled, too.  I put the band on my wrist and began to fidget away.  A short time later, sitting with my new friends, we talked about my rubber band.  It was my Shibboleth that day.  A pile of rubber bands later, all agreed it was fabulous that something so small could be so transformative.  And for the first time in my life, I felt like I was with My People.

So I ask.

When will there not be a need for an Autistic Shibboleth and when the hell can we just get on with it?

When might we stop needing hour-long PBS specials to share as our Shibboleth just to convince loved ones we’re seriously on the spectrum and not just looking for a cool new label.  (Because the label I would have preferred would have been “F-350” and it would be sitting in my driveway.)

As Popeye so eloquently said:  I yam what I yam.

Good Sunday to you all, My Friends.

Peace be with you.

Rachel

[***UPDATE*** 8-12-13 @09:58am.  It seems sometimes when I write and seek to make a point that generalizes what can happen within this community, some worry for me that I am writing in anger or sadness. That is not necessarily the case. As with this post, I just wanted to paint a picture for those who may think the diagnosis itself or the label is more important than the person. That reaction, a demand for *proof* or the disclosure of details that the individual may not and should not feel they have to share is dehumanizing. Most especially when it comes from those closest to us.

Learning that I was born with, and have lived with, a completely different neurology than assumed for the first 37 years is a very lengthy process.  There was the initial suspicion.  Then the exploding light bulb when it all instantly became clear in a flood of emotions and tears.  There was talking, lots and lots of talking, with my husband and my parents.  There was anger.  Then depression.  Then acceptance.  And now, my friends - joy.  I am so grateful to know me, the real me, better than I ever could have had I dismissed the possibility.  When I was ready, I sought confirmation from professionals in psychology and autism.  It's been almost a year now.  Slowly, I am piecing together my past in a whole new light, a brighter light, a light that shines where darkness once blinded me.

And miles to go before I sleep,
And miles to go before I sleep. - Robert Frost

I'm just fine, by the way, thanks for asking. Cheers!]

[ADDITIONAL THOUGHTS 8-13-13 @08:32pm. Inspiration for this post was from The West Wing, Season 2, Episode 8 "Shibboleth" and my inability to follow written and verbal directions when attempting to swipe my Visitor's Pass to gain access upon my visit to the White House in May, 2012.  Quite literally, I thought the uniformed gentleman standing before me was going to put me out of our misery.]


I Say Aspergers, You Say Fuck You

photo-big-2043460Recently, I attempted to communicate to a fellow autism parent and advocate that I was having a difficult time concerning the way she was addressing me personally within a group dynamic. There had been another issue prior where the two of us had clearly butted heads outside of the group, but I felt we resolved that and had moved on. This more recent episode, I was addressing a concern within our group via email. This member replied all and I felt rather than addressing the concern itself, her responses addressed me personally in a way that made me uncomfortable.  I was concerned that her comments reflected her own presumptions of my personal feelings that I had not declared to the group nor actually held.  I wrote to her privately to let her know that I did not like being addressed in such a way and that these are obviously a series of misunderstandings.  After all, I am newish to the group, so I wanted her to know that I was hoping for better times ahead.

I wrote:  “You and I, respectfully, do not know each other.  Please do not make assumptions.  Not once did I address you or your personal comments to a group response to []. If I am missing something in the bigger picture, please share. I do have Aspergers, so perhaps I am not catching the clues.”

This was the response I received:

“As to the possibility that “Asperger’s Syndrome” affects your perceptions here. Perhaps. But to be candid, I don’t particularly associate the kinds of communications problems we are having here with Asperger’s syndrome. I have three close family members with Asperger’s syndrome so I am quite familiar with the disorder and, at least in my experience, it isn’t characterized by this kind of repeated misunderstanding that one is being criticized or attacked.

Of course, as our autism families know better than most, individuals with autism are just as varied in their inborn personalities as people who don’t have autism. Personally, I would look for some other explanation for the hypersensitivity that has characterized some of your communications with me. But you are entitled to whatever view you choose to take of it.”

Now I am not at all a saint. I give as much as I get, just ask SGM. But in all sincerity, when a human being comes to another and says I have cancer, do we respond with BULLSHIT!?

Also, since when does I don’t get it equate to you are criticizing and attacking me?

Aspergers and Autism certainly are varied conditions person to person. For instance, I speak and write well but have difficulty understanding what I hear and read. I am sociable in certain situations and I can even be charming. But I also burn bridges (obviously) when communications break down. I am autistic. I am still learning how to learn. I am still learning how to live. I am still coping with how others perceive me and autism. I am still coping with me. I am still coping with autism. I am valuable. My feelings and my view of the world, though vastly different than others’, are my own. For better or worse.

It hardly seems ok that one person should be able to minimize who I am because she knows a few people with the same label.  Unless perhaps it was the two hours total we have spent in the same room together in this lifetime that afford her the enlightenment of knowing I don’t measure up to her Aspergian relatives.

So since she generously allows the entitlement of whatever view I choose to take of her note, how about:

I Say Aspergers, You Say Fuck You. I Say Your Loss.

And another bridge set ablaze.

 


Coming Home: Where Do I Grow From Here?

We must be the change we wish to see in this world. ~ Gandhi.

We must be the change we wish to see in this world. ~ Gandhi.

I am not a puzzle.

I am a person.

Autism is not my weakness, it is my greatest strength.

The weakness lies within those who wish to erase me or modify the very genetics that make me who I am.

I communicate differently. I see the world differently.

I love, I laugh, I hurt, I cry.

My friendships may be fewer, but they are mighty.

Knowing me means knowing autism.

While I may have challenges you do not understand, I believe we all seek to capture what eludes us in this life.

Autism is not a disease.

Let’s cure ignorance instead.

The world is changing. We are all changing.

Let us each help one another to feel safe and worthy on this journey.

Let us help our children to communicate.

Let us help autistics interpret the noise which surrounds their daily lives into meaningful sounds and experiences.

Let us not squeeze our autistic family, friends, and coworkers into impossible shapes that cannot accommodate them.

Let us truly listen and hear our autistic children and adults in whatever forms of communication they shine through.

For every person with autism, let us embrace them with passionate interest in what makes them so beautifully unique.

We may not have emerged from the same roots, but with nourished souls we can choose to grow together.

Love,

Rachel


Family Excluded From Pool Membership Because Autistic Son Requires Flotation Vest

“If we make an exception for one, we would have to make exception for all.”

Photo courtesy of ellingtonridge.org

June 27, 2013  [Updated June 28, 2013 6:50am]

Ellington, CT -  An exclusive country club in the suburbs of Connecticut excluded a family from becoming members because their autistic son would require a flotation vest while swimming in the pool.  With recent headlines of autistic children drowning rather frequently, one would think that a flotation vest would be a fabulous idea.  It seems it would be a much grander idea than outright discrimination of a person with disability and that person’s entire family.

However, when Mrs. Cristin Millen, a seventh grade Language Arts teacher in Ellington arrived at the Ellington Ridge Country Club to begin the membership process it never occurred to her that her son’s autism would exclude them from enjoying the same privileges other residents in the area enjoyed as members.  She left without being given an application but was told someone would get back to her.

“I almost didn’t say anything about his autism at all because I assumed it wouldn’t possibly be an issue,” said Millen.  “But when I became aware that the club had a rule banning flotation devices from the pool, I mentioned that I have a son with autism who is verbal, follows directions, and is a good swimmer.  I explained that we would be in the pool with him the entire time and that the vest was really just for peace of mind as he has always worn one.”

Ellington Ridge took Mrs. Millen’s request for exception under consideration for less than 48 hours before responding with a denial of membership.  Mrs. Millen was told that if an exception was made for one, an exception would have to be made for all, and that was not possible.

This country club is a private facility, which means that ordinarily the club owners and members could do whatever they please, invite whomever they choose to join, you get the idea.  But under the Americans with Disabilities Act (ADA), any private club that opens its doors to the public at any time, waives that right.  The Ellington Ridge Country Club offers to open its doors for banquets, weddings, business meetings, fundraisers, and birthday parties.

Wait a minute…

Can you imagine?

Can you imagine if someone like ME thought to plan my autistic daughter’s birthday party at a beautiful venue such as Ellington Ridge Country Club, put down a chunky deposit, invited ten or so other Flaptastic kiddos and their parental units? What would happen when all of us showed up at the pool with our vests and inflatable wings? Would we all be tossed to the curb?

Can you imagine?

Can you imagine, Ellington Ridge?

Excluded Flotation Vest and the Handsome Child Who Wears It

Excluded Flotation Vest and the Handsome Child Who Wears It

UPDATE: Friday, June 28, 2013 6:50am – Local media reached out to the ERCC yesterday afternoon for comment.  Management quickly asserted that Mrs. Millen never filled out the application, so therefore the club was unable to review her family’s request.  However, in WFSB’s on air coverage last evening, management admitted that Mrs. Millen was not given an application during the miscommunication throughout the week but that ERCC would happily accept the family’s application with waiver for the vest.  In an email communication from management to Mrs. Millen last evening the same offer was made but included a timeline in which the Millen Family was advised it would take until mid-July before their application with waiver to accommodate their son’s need for a Coast Guard approved flotation vest could be approved by the Board of Directors of the Ellington Ridge Country Club.

LINK to WFSB News Coverage > CLICK HERE.

 

WHAT DO YOU THINK??? COMMENT BELOW…


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