Tag Archives: autism

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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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.]


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.


Baby, You’re a Firework [Revisited]

[Firework by Katy Perry]

[This post was one of my first and continues to be a favorite of mine.  It lifts me up when I am feeling overwhelmed by the hard work it takes to let my Baby shine…]

Go ahead – Ask my crumbling shower walls.  They’ve heard it all.

Taken a beating and then taken some more. 

Good day?  Bad day?  CRAPTASTIC Day?  It’s all in the song…

How often do you find yourself completely enveloped in a song that seems to speak directly to you and tell of your heart in that very instance?

At the same time you are experiencing the sounds of the music with your ears – your eardrums vibrating wildly – tiny hairs across your skin dance rhythmically, your senses are heightened as every neuron in your body fires in syncopation.

The arousing intro… that first verse that captures you… the chorus that makes you want to sing your heart out… the bridge that lulls you back into the theme… before bursting forth from your very core in a declaration of every emotion that has been buried within you… slowly building and building over time… you can no longer contain it… it takes on a booming voice of its own you never thought resided inside you…

“Baby, you’re a FIREWORK!”

One of the very first things we noticed about RM was her response to anything musical.  Whether it was a lullaby, a Signing Time dvd or a Sara Evans song.

I have always sung to my children before they went to sleep.  A favorite of late is “Somewhere Over the Rainbow”… at Christmastime it was “Silent Night”.

One evening, as I was singing to my delicious babes, snuggled in tightly together and smelling sweetly of baby shampoo, I noticed something new.

Or rather not new – but different.

If you love a child with autism, you are likely familiar with the term ‘hand-flapping’.  It varies from child to child.  It’s a form of ‘stimming’ or self-stimulating behavior – a mechanism by which many of our kids soothe and comfort themselves, or simply burn off an excess of nervous energy.

RM’s hand-flapping is particularly her own.  For several months prior to her autism diagnosis, us proud and ridiculous parents thought she was brightly finger-spelling to herself in sign language.  Go figure.  She ‘flaps’ in a puppeteering motion with one hand close to her face as she stares at the movements of her long fingers.

Anyways… this night as I sang to her – her fingers began to move in such an orchestrated and delicate dance – ebbing and flowing back and forth with such precision, reminiscent of John Williams leading the Boston Pops through a 4th of July rendition of the 1812 Overture.  It struck me so hard it nearly knocked the song from my lips –

My child can SEE this song I am singing.

“…Cuz, Baby, you’re a FIREWORK!…”

Synesthesia is the neurological and involuntary “crossing” of one sensory or cognitive pathway with a second.  For example, a person who experiences synesthesia may hear a car horn and simultaneously feel pain, or a word written on a page may appear as each letter a different color.

 I KNOW that my child has gifts. 

I KNOW that she sees things most of us will never see.

I firmly believe that not only is her interpretation of the world a magical one – it is valid.

Though she may not have the words to express the song in her heart today, I know she is experiencing my love with a burst of colors that nothing can compare to.  I know that my love for her will carry her through the times when she feels like she is drifting through the wind, hoping she could start again.

I know that when her skin feels paper-thin and her bundled nerves feel like a house of cards that are caving in – my love will save her.  Not because it is fierce and strong and unyielding to the exhaustion of a long day with autism, but because I know that she feels my love in more ways than one can imagine.

She feels it tightly wrapped around her always – a booming firework exploding in light – smelling of sweet wildflowers and spring – and tasting like chocolate.

“…Baby, you’re a firework!… 

C’mon, show ‘em what you’re worth!”

 ♥

“…Even brighter than the MOON – MOON – MOON…”

*

 


TRICARE Publishes Interim ABA Benefit

Families Can Begin Submitting Claims for ABA During Interim Benefit Period

August 10, 2012

If you are TRICARE eligible, read the entire TRICARE manual change, it includes diagnostic codes and circumstances under which ABA will be reimbursed during this interim period. This change is retroactive, eligible claims dating back to March 5, 2010, may be reimbursed under this action.
 
If you are not sure whether you qualify, call your TRICARE regional contractor.
ALL TRICARE telephone contact numbers can be found HERE.
 
Refer to the TRICARE manual change, be patient and persistent in speaking with TRICARE claims personnel, they may not yet be aware. If you familiarize yourself with the information in the manual, you should be able to get the answers you need in regards to your own coverage.
 
TRICARE has a total of 60 days from the date of judgement (July 26, 2012) to appeal. Advocates and organizations are working hard to pursuade DoD/TRICARE not to appeal this landmark case.
 
The TRICARE interim benefit manual to cover ABA can be found HERE.

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