Monthly Archives: June 2013

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.]


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