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…


Graduating Typical Peer Preschool

Why My Seven-year-old Autistic Daughter’s Best Friends Are All Over 35

preschool-graduation-ceremonies

Today should be a joyous day for us here. There should be balloons and presents and cake and donkey rides or something.  But instead, it will be a quiet snoop and poop mission (real infantry term, you can look it up).  SGM and I will slide into the school for graduation and slide out, likely with me retreating into the fetal position in the bed of the truck as he takes us down the highway toward home at 80 miles per hour so that the sensory thrills of the ride numb me into a coma.

Let me explain.

It has now been a little over two years since RM began attending her outplacement autism school.  The one that took me fourteen months to get her into.  They have an amazing typical peer preschool on site, NAEYC-accredited, with staff that is fluent in sign language, art, music, and love.  The peers are ages three to five and are hand-picked to be excellent models for autistic friends.  In this setting where RM has spent about one-third of her time over the last two years, she has learned critical basic pre-educational skills such as turn-taking, group games, learning to sit for circle time with weather and calendar, following simple group activities, learning about friends and social themes like birthdays, holidays, and family.

Her time there has been priceless.

And filled with joy.

So today is a bitter pill to swallow.  My baby loves her friends in preschool.  But she is now monstrously larger than they are, and as she is turning seven in a few weeks, one cannot argue that the time to move on has come.  I accept that.  The school has been fabulous about slowly weaning her time out of the preschool over the last few months, so that it shouldn’t be a recognizable trauma for anyone other than me.

So here we are.  As she rode off on her van this morning the chest pains came and the crocodile tears and SGM telling me this is all ok, this is her path right now.  And sure, I agree.  And I didn’t even punch him.  He’s right. And I continue to cling to the God’s honest belief that truly, RM’s very best friends are not the children at the school anyways.  That was never the case from the very beginning. RM is in love with her teachers.  The DOZENS of adults who love her and care for her and teach her and joke with her and smile with her and talk with her and listen to her every single time she has something to say.

She thrives at this place because it is the grownups that hear her and understand her.  Not the typical peers, nor her classmates.  She loves this place because she is challenged there, not by communication boundaries, but by academics.  She loves this place because she knows well enough that these grownups are going to teach her the correct social cues every time.  She doesn’t have to decipher the behaviors of the typical peers there anymore.  And for now, just for now, I am ok with that. I have to be.

Here at home RM has her nine-year-old brother who adores her as her best friend.  They belly-laugh and play legos and watch silly videos of themselves and belly-laugh some more.  They are madly in love with each other.  If school doesn’t have the “age-appropriate” peers, well I have the best one at home anyways.

Meanwhile, trust that I aim to correct this situation at the outplacement.  There are far too many brilliant options to be considered.  There are ways we haven’t yet found to give our kids access to social time with typical peer models, so let’s find them.

Even the “best” can always be “better”.

My hope and dream for all parents is that you truly, deep within your heart believe that those scary sounding letters “I.E.P.” can start to look less daunting.  I want you to believe that you have the right, and the power, to build a program that has never been built before.  You can build it for your child.

There is no such thing as, “We don’t do that.”

Cheers,

Rachel


DoD Reports to Congress with Mystifying Excuses for Failing to Comply with Legislation

“Pilot Program” Held Paralyzed by

Pentagon’s Divisive Concern for Military Autistic Children

Autism Speaks obtained a letter from DoD to leaders in Congress dated May 7, 2013, expressing the several mystifying factors that make it impossible for autism therapies to be implemented.  CMKAA, a federal law, was passed in 2012 and modified in Committee as a Pilot Program to be implemented no later than April 2, 2013.  Families are still waiting.

It sounds like the DoD is truly worried for our military families with autism.  If they start treating some of our kids, just think about what would happen:

First, there are too many kids to treat and not enough providers.  Can you imagine? Even if one more child with autism received the treatment he or she needs while we figure this mess out?  Well, that would be tragic.  And I think promoting career advancement in the field of BCBAs is a stupid idea, too.  I’m with you, DoD.

Next, apparently due to a lack of mobile diagnostic capability, the military kids who have autism are too spread out to find them all.  So why start the search?  We might actually find them.  If we find them, we may have to treat them. Shhhhhh.  Next thing we will find at our doorsteps are ghillie suits for our autistic kids with a note from the DoD that says, “Put this ghillie suit on your kid. Ghillie suits cure autism. And here’s a map to the nearest pond.”

Cannot treat what you cannot see.

Cannot treat what you cannot see.

If that doesn’t work, at some point the DoD will just have to start to acknowledge the existence of our thousands of autistic kids and that the treatments proven to work um, actually do.  Which means, DoD, you will have to start treating them.

I know, DoD, if you start treating them, there will only be more and more to treat because autism is increasing in prevalence.  So you’re right, DoD… let’s just pretend this all never happened.  Coffee, anyone?

DoD letter

[The petition to Congress to actually MAKE autism treatments available to all military dependent children is still active and every signature sends a letter directly to every Armed Services Member urging them to take action. You will find the petition HERE. Sign it. SHARE it. Thank you.]


In the Land of Oz (Home of the IEP)

I was just tending to the farm and trying “not to get into any trouble.”  SGM’s boots had just hit the ground in Afghanistan.  RM was three years old and relatively healthy.

RM had transitioned into the special education preschool in district and was making very little progress.  When the autism diagnosis came, the relationship with the district became a cyclone of lies and deceit and I was swept up into their storm.

I don’t remember how bad it really was.  I only remember darkness and the feeling of spinning…

When I came to in an unfamiliar land, little did I know then that my house had landed purposefully atop the Wicked Witch that viciously ruled the Munchkins.

Another autism mom (RM’s YMCA teacher from more than a year prior) magically appeared descending through the clouds.  She was surrounded in an effervescent glow with a gentle smile that could kill and in place of an exquisitely sparkled wand she carried a bloodied and bruised wooden bat.

She did not hand over a pair of ruby shoes.  No.  She handed me the bat.

It would take entirely too long to explain the misadventures down the Yellow Brick Road in this one post, many are highlighted in the archives here.  But I will tell you that along the way to an appropriate outplacement I met many characters in The Land of Oz.

The Scarecrow led me in the wrong direction.

The Tin Man really had no heart.

The Cowardly Lion hid behind a title and a desk.

The Wicked Witch always waited until four o’clock on a Friday to mail shit to my home.

There were Flying Monkeys and a Forest of Fighting Trees.  All terrifying at first glance but would reveal themselves as completely ineffective at their jobs.  They relied on gruesome makeup and the special effects of words like “Due Process” and “Mediation” to keep up the charade.

I was desperate to make my way to Oz.  I thought the power I needed to find comfort at home again could only be granted by The Great and Powerful Wizard.

I honestly had no idea who The Wizard was.

I went to Congress and looked for The Wizard there.  I went to The White House, too.  I went on cable news and begged an entire nation to help me find the answer.  WHO is this Wizard?

WHO do I BEG for an education for my child?  WHO will fight for her?  WHO will LOVE her enough to say YES?  WHO will seek justice for her?

WHO IS THE GODDAMNED WIZARD??

When my child’s placement is threatened, WHO do I fight?

When her programming needs to be reframed, WHO will write the goals for her to access the same curriculum as every other child?  The science and the social studies, too?

WHO will teach me the laws and how to hold the district accountable?

WHO??

PLEASE. TAKE ME TO THE FREAKING WIZARD.

Oh.

What?

I see.

It’s me.

I was searching for what was there all along.  I just didn’t understand that I possessed the brains, heart, courage, and power to make it all happen.

Yes, I needed a little help from a Good Witch and countless other parents who shared their own experiences. Yes, I needed the bat once in a while to ward off The Flying Monkeys.  Yes, I needed to educate myself.

But in the end, it took only a few emails and a bucket of water.

Because really, truly, I had The Power all along.

So do YOU.

So do YOU, my friend.

Don’t let the cast of characters in Oz make you feel less than THE MOST IMPORTANT, EFFECTIVE AND POWERFUL MEMBER OF YOUR CHILD’S EDUCATIONAL TEAM.

The Scarecrow is not smarter than you.

The Tin Man does not love your child.

The Cowardly Lion will never have your back.

At the end of the day your brains, love for your child, and courage to take charge of the Individualized Education Plan (IEP) are the most tangible and relevant elements in a land somewhere over the rainbow.

When I felt like the characters I faced were not acting in good faith, I opened up The Curtain using The Freedom of Information Act (FOIA).  I used a State Complaint and the Individuals with Disabilities Education Act (IDEA) to pour a bucket of water on The Witch.  You see, these are free and fairly straightforward tools that were created for ME.  They are nothing to be afraid of and they are actually very easy to use.  And if you feel that you aren’t sure of how to use them correctly, there are state and federal officials who get paid to enforce IDEA and FOIA.  That is their job.  They are not Flying Monkeys, THEY WORK FOR YOU.

Actually, everyone involved in your child’s education work for you, too.  Even Scarecrow, Tin Man, and The Cowardly Lion.  They are your employees.  YOU are The Wizard.

I finally learned that the IEP is my own legally binding magic wand and as The Wizard I write the goals that dictate the services my child receives.  If district and school staff are unable to execute programming that allows my child to access the general curriculum as outlined in her goals – separate goals for each core curriculum standard* – then I grab the bucket of water and pour.

There is no one to fight.  There never was.  I just needed to figure out that I AM THE WIZARD.

I. AM. THE. WIZARD.

And so are YOU, my friend. SO. ARE. YOU.

wizard

***

[*45 of 50 states have adopted Core Curriculum Standards and have/or are in the process of implementation. Individual states should have curriculum frameworks available on their education department websites, or for entertainment factor you can request the subject frameworks from your district BOE.  The very basic intent of IDEA is that every child, regardless of disability has ACCESS to the SAME curriculum as the general education population in ALL subject areas INCLUDING ARTS AND SCIENCES. Kids with autism deserve better than goals that are reflective only of basic human functioning – they deserve to experience the entirety of what this world has to offer.]


An Open Letter to Governor Malloy, Connecticut Congressional Delegates, Manchester Board of Education, Board of Directors, and Manchester Public Schools Administration

[Hello, Friends.  This morning I sent the following email to just about everyone. Attached was the State Department of Education complaint we filed last week. I am not sharing the actual complaint document here as it contains personal details, but the general content of the complaint is described in the below letter.]

Good morning, Governor, Ladies and Gentlemen,

 

My name is Rachel Kenyon, mother of RM (6).  RM is a special education student in the town of Manchester and attends the *** School.

Once again, our family has been subjected to unethical practices carried out by the Pupil Personnel Services (PPS) Staff of Manchester Public Schools.

Attached you will find the complaint filed last week with the State Department of Education, Special Education Bureau.  There were an additional 200 pages of documentation that we provided to support the complaint.  Those documents are available upon request to all parties in this communication. This complaint was filed after a Planning and Placement Team (PPT) meeting on March 4th, 2013, during which the Outplacement Coordinator of Manchester Public Schools (MPS), refused to listen to and accept a recommendation by RM’s neurologist and advised me instead to file for mediation or due process, or file a state complaint.

I spend much of my time advocating for special needs families when I am not advocating for my own children.  Sadly, time and again the families that seek out my assistance are also victims of the continued practice of MPS to say “no” to appropriate services for special education students, forcing parents into a corner.  Special needs families are struggling day to day.  We are the most vulnerable population within our communities while also the most underserved.  Most of our families do not have the resources to spend thousands of dollars on attorneys’ fees to push for the legal access to education their children are afforded under the Individuals with Disabilities Education Act (IDEA), 504 and the Americans with Disabilities Act (ADA). Rather, our families are being bullied to the brink of exhaustion within a system that is so inherently flawed that the Pupil Personnel Services (PPS) staff think nothing of laughing at parents and telling them to go ahead and file for mediation or due process.

Our family has endured several such PPT meetings where we were laughed at and ignored by PPS, and talked over by Board legal counsel.  We have been to mediation.  We have spent thousands on attorneys’ fees while my husband was serving in Afghanistan.  Years later now, I have educated myself regarding the rights and laws designed to protect my child’s best interest, yet I have never experienced a single member of the PPS staff exhibit an ounce of compassion or reason when discussing my child’s education. Instead, PPS staff have refused to even listen to physician recommendations and also refused the simple courtesy of including a school physician consultant in PPT invitation.  Even more disturbing, is that the Outplacement Coordinator for MPS was once RM’s in-district speech pathologist.  There was a time when Ms. Outplacement Coordinator claimed to love my child and enjoyed eating lunch with her each day.  Subsequently, it was Ms. Outplacement Coordinator who rejected RM’s neurologist’s diagnosis of autism in 2010 while my husband was in Afghanistan.  MPS then conducted an in-district evaluation while our family hired an attorney and pursued an appropriate Independent Educational Evaluation, mediation, and eventually outplacement.

My daughter may have disabilities, and she may need accommodations to access the educational curriculum, but she is worthy of the same high expectations that we place upon our “typical” children.  IDEA specifically states that right.  Please tell me that you agree we should have high expectations of our educators and PPS staff as well. Please share with us that you agree and understand that the accommodations and high expectations we have of our special children today will prepare them for a successful and independent future rather than a lifetime of dependence on social programs and dollars, incarceration, mental illness, or worse.

As a lifelong resident of Manchester, it is sad and so embarrassing to know that Manchester Public Schools has a deplorable reputation regarding special education.  The special needs community sees no improvement on the horizon.  How can we come together to change that?  Because requiring my Congressman’s office to attend and observe a PPT seems dangerously heading in the opposite direction of any hope that we can make our district great again.

While I continue to learn more about MPS and district practices, I also invite all of you to get to know my daughter and our experiences with Manchester Public Schools.  I invite you to witness the deep chasm between the best interests of our unique and amazing children and MPS practices.

I wish to take this opportunity to thank MPS for pushing me so hard to fight for my daughter’s educational rights.  Not only has it allowed me to pay it forward and teach other parents how to advocate for their children, but it has given me a national platform to pass federal legislation and bring these battles to light.  I have made multiple Freedom of Information Act requests to Manchester Public Schools. Please look for my upcoming articles with TIME, Huffington Post, Autism Speaks, American Military Families Autism Support, Babble.com, The Courant, The Journal Inquirer, Manchester Patch, and CTFEAT, as well as my own publication Welcome to StimCity.

Thank you for your time. I look forward to working with all of you to bring awareness and equality to the special education of our most unique and amazing children. Most especially, I look forward to seeing Manchester Public Schools work to improve their service to the special needs population and lift up our families rather than add to our burdens. I look forward to one day sitting across the table from MPS staff and having a sound, meaningful relationship which includes respectful dialogue concerning the best interests of my daughter.

Best,

Rachel Kenyon


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:


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