Author Archives: Rachel Leslie (formerly Kenyon)

About Rachel Leslie (formerly Kenyon)

Rachel Leslie (formerly Kenyon) is an Aspie, Advocate and mom of two beautiful babes - The Boy (10) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome.

Autistic and the F-bomb

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

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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.

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

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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.

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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.

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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.


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…

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Contact HASC & SASC Today!

Rachel Leslie (formerly 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

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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>…

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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…

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Originally posted on Caring for Military Kids with Autism Act:

Friends,

I just received a call from Representatives John Larson and Mike Doyle, the original cosponsors of CMKAA. The Senate version passed this evening as part of the National Defense Authorization Act (NDAA)!!! The amendment was approved 66-29.
The measure must still clear ‘conference committee’ – that is where legislation that has passed on both sides of Congress is determined agreeable in its nature and language.
Once this is secured, and I am assured MANY Members of Congress are committed to seeing this through, The President will sign the NDAA into law with our amendment included.
THANK YOU to all who worked so hard to see this through, and especially the families who stood up to be heard. Bless us all.

Best,

Mrs. Rachel E. Kenyon

Wife to Command Sergeant Major William W. Kenyon, 1BN 102IN(MTN), CTARNG

Mother of two beautiful babes – one with autism.

Owner, author of Stimcity.org…

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Originally posted on Caring for Military Kids with Autism Act:

From AutismVotes:

The Senate is about to vote on an amendment to the 2013 Defense bill that will greatly improve access to proven autism treatments for our military families. Sponsored by Senator Kirsten Gillibrand of New York, the amendment will assure all military families, regardless of their duty status, have access to behavioral therapies, such as applied behavior analysis (ABA), under the military healthcare program TRICARE. Existing ABA benefits are limited and often fall short of minimum standards and prescribed levels of care placing an undue financial strain on many military families. Further, military members also face the loss of those benefits when they leave active duty, even as a result of being wounded in action. Senator Gillibrand’s amendment would end those inequities and align TRICARE policy with best practices providing the medical care our military families have earned and deserve; a similar measure has already passed the House…

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