Author Archives: Rachel Kenyon

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome.

The Aftermath

My last post was the most painful experience of my entire life.  The words.  The responses.  The guilt.  The horror of labeling my own precious child in such a way will haunt me forever.

So why?

Why did I take and use my own baby girl, millions of minorities, and gay people to selfishly and disturbingly make a point? Why did I so callously satirize the entirety of every Civil Rights movement of our last several generations and grind them up into painful, shocking commentary just to make a point?

If everything about it and the language and words I used are so wrong, so hurtful  – why not delete it?

So much of me would love to slide my mouse over the word “DELETE” and erase the pain and discomfort I have caused good people who were here to support an important cause.  I would give anything to take away the pain of something so dark and evil with one click.

But my beautiful, brilliant baby girl deserves better.  We all deserve better.  We all must do better.

Because it truly isn’t just a word.  None of them are.

What lies in the shadows of such words is so much more.  Slavery.  Brutality.  Indignant and ferocious HATE.  Centuries of torturous treatment, institutionalization, and illegitimacy.

The following categories of people were denied basic human rights and legal status just less than one hundred years ago [in no particular order, and there are so many more not listed]:

African-Americans

Women

Homosexuals

Interracial Marriages

Unmarried couples

Orphans

Illegitimate Children

Refugees

Girls Who Play Hockey

Native Americans

Americans with Disabilities

Sexually Harassed Employees

ESL Students

Short Women Applying to Be Police Officers

[It wasn’t even until last year that employment discrimination on the basis of gender identity or transgender status became illegal under Title VII.]

You see. We have so much work to do for so many people.  My daughter is one of them.

Look at the list above.  How many of our fellow humans are still fighting to be treated fairly and shown respect, even after the law of the land has pronounced their Civil Rights?

IDEA and IEPs are legal frameworks for educating my daughter.  I thank GOD for that much.

But laws do not assure people’s evolution of acceptance.  That is something we change within ourselves.

Just as those who have fought so hard for Civil Rights would not hesitate to teach their own children to continue to carry the torch, I must ensure my child knows her worth by speaking up and telling her story.  All of her story – the good, the amazing, and the change we seek in this world.  Someday I will have the honor of sharing these stories with her and showing her that she was worth all of it.  Every word.  Every chapter.

Her story is powerful.

SHE. Is. Powerful.

IM000235.JPG

More powerful than any word.

Thanks for stopping by.

Love,

Rachel


So. Let’s talk about the retards.

We all know one, right?  Or at least see them bagging our groceries?  Or maybe the cousin of a friend of a friend has this kid who’s stuck in a wheelchair and just drools all day?  Or what about the kid in your kid’s classroom that is always causing all of the problems?

You see, the other day I showed up at my retard’s autism school for her annual Individualized Education Plan (IEP) meeting and the district staff wasn’t there.  You know, those folks from the school district administration that are charged with that whole business of educating our retards, whatever that means?  Those ‘special education’ people.  Not there.  They didn’t show.

They phoned it in.

From eight minutes away.  Without telling anyone.  Without advising me of my right to refuse such an arrangement. My retard wasn’t worth the gas to show up.

So we went around the table per usual as each of the autism school teaching staff outlined my retard’s progress and areas of concern and what the proposed goals would be for the coming year.

I know… I know… it’s a waste of time to spend money on a retard like mine just so that she can grow up and become a productive and content member of society. Like that could even happen.

But then it was my turn to speak.  And I attempted to advocate for my retard because she is unable to advocate for herself.  Her silly crackpot neurologist wrote a letter of recommendation to increase the amount of time my retard spends in school because the proposed goals and objectives for the coming year were increasingly challenging and there were concerns that my retard would not progress without the appropriate accommodations to her school day.

I spoke up because as a parent of a retard, I am to be considered an equal partner in the IEP TEAM.  Did you catch that word there? TEAM.  And for those who fail to understand what the concept of an IEP meeting is, let me explain….

You come to the table with any and all relevant information concerning the retard and their educational environment, goals, objectives, strengths and weaknesses.  You review evaluations.  You discuss and agree to services.  Together.  As. A. Team.  You are not there to sign off on a draft IEP document that was created PRIOR TO THE TIME ALLOTTED FOR COMING TO THE TABLE TOGETHER FOR THE PURPOSE OF PLANNING AND CREATING THE IEP AT THE IEP MEETING.

Often when a retard has been in the same placement the prior year, a draft IEP document will be made available to all IEP participants, sometimes even in advance of the meeting itself.  This can be very useful because it serves as a TEMPLATE for implementing a NEW IEP.

But when you live in a school district that does whatever they want, however they want and are never held accountable to the laws and rights put forth to protect the retard and his or her parents, it seems pointless.

You see, retards are a pain in the ass waste of time and money.  They suck the school districts dry and create nothing but a black hole of resources.  Retards drain the economy.  Therefore, our school district would not entertain the crackpot neurologist’s recommendation.  Instead they violated my retard’s rights by refusing to even hear it.

Heyyyyyyyyy…. You know who the retards remind me of now that I think about it?  The niggers.  And the faggots.  Those worthless pieces of crap just wouldn’t shut up and go away so now we have to sit at the back of the bus and be subjected to queers who want to hold hands in public and dear god – some of them actually want to ruin the sanctity of marriage.  Jesus, it’s as bad as fucking voting rights for broads.

When the hell did we become a society that allows for such whimsical individual rights?

Pussies.  I sure hope our educational system doesn’t actually start readily following the law and providing the services those retards need.  Then there’ll be no one left to oppress and I’ll be stuck watching Real Housewives reruns on Bravo because I have nothing better to do with my time.

********************************************************************************

end r word

It’s not just a word. It’s an oppressive practice of denying human rights. End it. Now.

Love,

Rachel


Autistic and the F-bomb

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

bw6

Every day, she steps outside this door into a world that doesn’t quite understand her yet.  Where stares and whispers and outright insults assault her everywhere she goes.

Like the R-word. Retard.

She can hear you.  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.

bw4

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

bw1

She may have challenges that are unique to you and I, but she isn’t complaining.  She is overcoming.  She hears the conversation and she is saying I AM WORTHY.

It is autistics like her that are changing the world every day with their determination and their spirit to change our perception of autism.  With a single smile this child commands that you respect her heart, her intelligence, her inner fabulousness that shines brighter every day.

RETARD.

That word cuts deeper and inflicts more pain than any other weapon possibly could.

Unlike a bullet that rips through flesh, that word shreds the soul leaving the kind of scars that never heal.

Each day she steps outside our door and into the world, she is asking you to embrace her.  She is expecting greatness of heart from you.  She is expecting nothing less than what we all yearn for on this earth.  Love and acceptance.

bw2

She deserves to live each day being FABULOUS, not continuously victimized by a word that is used by people so consumed by egoism they feel the need to protect their seemingly harmless right to wield their wordly weapons.

It has not always been easy.  It has not always been fabulous.  There have surely been people whose words have made the journey painful at times, and there have been so many more whose loving words have made it sweeter.  The sweetest have been the moments when just one more person chooses to never use those hurtful words again.

My daughter is heaven on earth for me, my husband, and her older brother.  The beauty of her transcends all boundaries of what words used to describe her could ever cage.

bw91

This is my daughter.

She is autistic.

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


Unfettered by the Unpretty

Friends, there has been much discontent among the ‘autism community’ – which in my understanding is the correct term for *all* persons with an interest in autism to include parents, Autistics, professionals, educators, advocates, etc.

I have remained quiet and abstained from such discussions.  Not because I lack passionate opinion, but because my interest is in remaining a useful member of the community.  Even in advocacy efforts, I have attempted the impossible of not affiliating myself with one particular organization over another simply because of the intense conflict over the years, most of which occurred long before I came on the scene, and sadly seems to be progressing rather than waning.  What is most upsetting is that these divisive chasms make the possibility of unfettered autism unattainable.

That’s right – unfettered autism.  Because that is the wish I have for all who parent autism, live autism, educate autism, advocate autism and embrace autism.  It is also my wish for those who see autism as unpretty.

I feel in order to exist as a community, it requires us all to speak our own truths as we see fit in a respectful manner.  A manner which takes into consideration that none of us are an expert in autism.  Autism, and Autistics, cannot be contained in one definition, one area of expertise, one science, one belief system, one treatment plan, one advocacy campaign, or one collective understanding.  As in all meaningful exchanges, not only should we speak our own truths, we must listen and accept the truth of others.

To consider the impossibility for any forum to contain both parents and Autistics is as devastating as either group not considering the natural differences in each other’s experiences.  Such exclusivity of what some see as polar opposites of the autism community is as deadly as our country’s inability to come together and discuss gun control in a civil and respectful way.  It suggests that my own home is considered a battleground between my love as a parent and the individual rights of my daughter to be an Autistic.  Absurd.  What my home and my family live each day is no more open to debate than what an Autistic should be able to achieve in life.  The answer to both is whatever works.  [May I also add, that for gun control to be debated only by lawmakers, lobbyists and activists rather than including victims and citizens from our poorest city streets to the most affluent suburbs is equally ineffectiveI digress…]

When my daughter was born with a chromosome deletion, doctors said that if she survived at all her life would be limited.  She may never sit up, smile, walk or talk.  It was devastating news.  And as a mother, I can say this with sincerest honesty and truth – I wanted my daughter fixed.  The layers of what that means to me and my daughter cannot be experienced, understood or explained by anyone outside of us.  And it does not afford any person the right to judge that onion.  I can only touch upon the intent of such desire by saying that I chose for her to be cut open and given a life-sustaining feeding tube.  I chose for her to be cut open again and her heart repaired so that she could run and play as she grew older.  I chose these ‘cures’ to allow her the most opportunity for an enriching life – whatever that would mean for her.  As a mother, I feel that is my greatest responsibility.

When autism was included in her list of many diagnoses, yes, I wanted to fix that, too.  I wanted to learn everything I could about autism so that I could get RM the treatments that would afford her a better life.  I wanted her to be successful, to be active in our family life, to fulfill every ounce of potential within her to live her best life for her.  Never have I set out to change who my child is meant to be, rather as her parent I feel the responsibility lies in adapting to her needs and her autism.  That requires an open mind, an open heart and the building of a new parenting framework.  Simply put, this is not the parenting we expected and therefore as parents we have much to learn in order to grow with our autistic children.  It’s a process, a journey.  Sometimes we get it right, and there are times we fail miserably.  With hope and love, we try again.

Though I am no expert, I have learned enough about autism to know that my daughter is amazing regardless of the challenges she faces.  And though it has taken time for me as a parent to digest it, I know that autism is as much of who she is as the freckles on her nose.  It took time for me to learn this framework of parenting autism that differentiates between fixing a problem and growing a useful tool box.  It took time for me to unlearn the unpretty and embrace the unfettered.  It took time to expect RM to work hard for what she wanted instead of making excuses for why she couldn’t.  At her pace, with her own tool box.  For us, that meant advocating for an outplacement autism school.  Not to fix her, but to unfetter her.

As a parent, I am thrilled to learn as much as I can from self-advocates because I want my daughter to grow up empowered as an Autistic.  I have come to rely on the useful perspectives of those who choose to speak their truths and work within the autism community to bring us together toward a common goal of understanding the very real spectrum of this spectrum.  I rely on my fellow parents to walk this road with me and I rely on Autistics who have navigated the road ahead to guide me.

My wish is not for compromise of truths, but communion.  I wish for a universal agreement that the unpretty is unproductive.

I am trying.  Every day I am trying to grow my children.  I am trying to forge a better path for my autistic daughter.  I am trying to share our truth and I am listening in effort to understand yours.  Sometimes I get it right.  Many times I falter.  But I am trying.

This is my unfettered and sometimes unpretty truth as an autism mom.

This is my unfettered autism:


Originally posted on U.S.:

Less than a week after the tragedy in Newtown, Conn., conferees from the House and Senate met to discuss this year’s defense bill. Sadly, at least some of those conferees seem to have missed one of the larger points related to that horror: the need for families, in this case military families, to have access to the needed behavioral health treatments to treat their children with disabilities.

Let me be emphatic to say I’m not linking Newtown to children with disabilities. But it has reminded us of the importance of mental-health care for all.

In the middle of a national debate on appropriate mental health (of which behavioral-health treatments for our military kids is a component), the conference committee considering the 2013 National Defense Authorization Act found a way to overlook the votes the House and Senate had previously taken to support our military children.

In the House version…

View original 1,147 more words


Contact HASC & SASC Today!

Rachel Kenyon:

PLEASE TAKE ACTION AND SHARE! IT IS SO EASY! OUR MILITARY FAMILIES NEED YOU!

Originally posted on Caring for Military Kids with Autism Act:

ARMED SERVICES COMMITTEES

HOLD OUR FATE IN THEIR HANDS

OLYMPUS DIGITAL CAMERA

Friends,

I have personally contacted every office of every HASC and SASC Member to urge them to pass the NDAA on to President Obama with our autism legislation intact.  I am sharing their email addresses with you to do the same.  With one personal note, you can group email with one click and help change the world.  Just copy and paste the addresses into your email message and tell them – it’s personal.

 

HASC Chiefs of Staff and Legislative Directors:

Adam Howard <Adam.Howard@mail.house.gov>; Adrienne Elrod <Adrienne.Elrod@mail.house.gov>; Andrew Lattanner <Andrew.Lattanner@mail.house.gov>; Angela Kouters <Angela.Kouters@mail.house.gov>; Arthur Sidney <Arthur.Sidney@mail.house.gov>; Ashley Shillingsburg <Ashley.Shillingsburg@mail.house.gov>; Ben Schultz <Ben.Schultz@mail.house.gov>; Betsy Hawkings <Betsy.Hawkings@mail.house.gov>; Blair Milligan <Blair.Milligan@mail.house.gov>; Bobby Cornett <Bobby.Cornett@mail.house.gov>; Brad Gentile <Brad.Gentile@mail.house.gov>; Brad Katz <Brad.Katz@mail.house.gov>; Brian Crawford <Brian.Crawford@mail.house.gov>; Brooke Bennett <Brooke.Bennett@mail.house.gov>; Casey Street <Casey.Street@mail.house.gov>; Chic Dambach <Chic.Dambach@mail.house.gov>; Chris Austin <Chris.Austin@mail.house.gov>; Chris Connelly <Chris.Connelly@mail.house.gov>; Chris Kelley <Chris.Kelley@mail.house.gov>; Chris Perry <Chris.Perry@mail.house.gov>…

View original 568 more words


Originally posted on Caring for Military Kids with Autism Act:

action alert***ACTION ALERT*** IN ONE CLICK YOU CAN TELL THE CONFERENCE COMMITTEE MEMBERS TO SEND OUR BILL ON TO THE PRESIDENT FOR SIGNATURE!!!!! Use the link below at Autism Votes to send an email to each member of the House and Senate Armed Services Committee Members with one click!

WE NEED YOUR VOICE!

Thank you!


My name is Rachel Kenyon. I am a proud and battle-tested Army wife and mom of two beautiful babes, one with autism.   Currently, TRICARE military healthcare provides less than half the recommended treatments for autism, and only to children of active duty service members.   Service members who retire after more than twenty years and Wounded Warriors forced to medically retire are stripped of what little treatment TRICARE allows via the Extended Care Health Option (ECHO).

 

On Thursday, May 17, 2012, Congressman John Larson took to the House floor armed with embarrassingly large…

View original 496 more words


Follow

Get every new post delivered to your Inbox.

Join 101 other followers

%d bloggers like this: