Tag Archives: special education

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.]

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Manchester Schools Refuse to Maintain Transportation Monitor. Oh. And Chicken Bones.

If you haven’t been around for the fun, please read THIS, THIS, and THIS.

Cheers.


Put Down Your Hammers

RM isn’t quite there yet.  Surely, she will always be unique.  But right now, at 5-years-old, she is safely tucked away at an outplacement ABA program that caters to exactly who she is.  There are only square pegs there.  From staff to students.  All square pegs.  It’s a safe space for her to learn how to learn.  Period. 

But someday, she will be out in the world; whether in an integrated classroom at the public school or as an adult in the workplace, she will need to fit somehow.

Stimeyland wrote an amazing post, “Not Even Wrong”.  And I want you to read it.  I want everyone to read it.  It applies to everyone.  It applies to me.  It applies to my neurotypical son who is not so typical and it applies equally to RM.

So please.  Read on.

“…It also perfectly encapsulates what I want for my kid—a place, an existence, where it is okay for him to be not even wrong. Because I love the way Jack’s brain works. I love the way autism has given him this unique perspective that lets him come up with some of the most amazing things. I adore his not even wrongness. I want him to find a way of life where starting from a fundamentally different point of view is an asset to him and where he can be valued for that.”

For the entire article, please go to Stimeyland.

Stimey is mom to Sam, born October 2001; Jack, born May 2003, and Quinn, born May 2005.  Stimey is a stay at home mom among various other part-time endeavors and jobs, including learning about parenting her autistic child (Jack).

Stimey also founded and runs AutMont, a website dedicated to autism-related events, information, and community in Montgomery County, Maryland. AutMont is also on Twitter and Facebook. Email Stimey at: stimeyland@gmail.com or follow her on twitter: http://www.twitter.com/Stimey


A Toe-Walking She Will Go

I’m already nearly in tears.  I make mental note to never get to the school early again.  The waiting is killing me.  It’s 2:28pm and the last ten minutes have been pure torture.  Another mom is sitting nearby with her typical daughter.  They are waiting, too.  The mom seems just as anxious.  I have never met her, but I feel the need to cut the tension with some small talk. 

“I still cry every time I pick her up from school.” 

“I know what you mean,” she replies.  “It seems funny.  It’s not like she’s away from me that long but I am always so anxious to see her again.” 

“Me too.”  I turn to look down the hallway for the millionth time.  Nope.  Not yet.  “It’s just such a blessing to know she is so happy here.” 

A truly adorable little blond-haired girl is making her way to the lobby, escorted by one of the dozens of truly adorable young ladies that teach here.  Mom and sister perk up immediately and the little girl having seen her mama starts squawking sweetly and flapping with excitement.  Mom eases down to her knees and opens her arms widely – her baby nestles in deep and Mom is clearly melting to have her baby back.  Mom asks little one about her day at school but the little one is unable to answer with words so instead her body language does the talking for her.  She is truly happy to see her mother. 

I am now bursting at the seams with anticipation of getting my hands on my RM. 

Buses have shown up and other students are making their way with their escorts to the front door.  One by one.  …Autism is one word, but there is no one autism…  Each of the children ranging in age from 3 to 13 have their own signature style of exiting the building.  Some are squawkers, some are flappers, some are just quiet and have the most peaceful looks on their faces.  Regardless of the way they work it down the autism runway – they are all clearly members of The Club. 

Now you might think I am an idiot, or just plainly a jackass – but I don’t view my daughter as a Club Member.  Maybe it is because of all she has already been through medically just to be here.  Or maybe it is just that I think she is the freaking most fabulous creature ever.  Yes.  I meant to word it that way.  Freaking.  Most.  Fabulous. Creature. Ever.  I really do not know why it is so hard for me to look at my little girl as autistic. 

But here she comes.  In all her glory she is making her way down that runway singing her heart out with lyrics no one is the wiser to and bouncing so joyously on those toes with every step.  She is happy.  HAPPY.  I don’t know how I managed to pop out two of the most cheerful, positive rugrats on the planet – but apparently I did.  And I do believe that nothing could change that about them.  Not even autism. 

I slip off my chair as she sees me and I throw my arms out wide.  She runs to me screeching with excitement and smiling so hard I wonder how she can see where she is going with those chubby cheeks pushing up at her now squinty eyes.  She throws herself into me hard and I squeeze her so tight perhaps I cause her to lose a breath.  But no matter – we are both so excited to be reunited once again. 

I stand up and she takes my hand as we walk to the car.  She is bouncing on clouds every step of the way.   As it should be.   Who am I to judge my daughter by her disabilities rather than her happiness?   

It may have a name – autism – but it doesn’t have anything on my bouncy, flappy, beautiful girl.  She is my daily gift to remind me that we are all unique by design.  Pure and simple.  We are all graceful in our own way.  Whether we sashay, roll, stumble or toe-walk our way down that runway.

A toe-walking she will go.  A toe-walking she will go.

She is mine.  Fashionably bouncy and ALL. MINE.

 


My Daddy is a Soldier

This Father’s Day, I honor the soldiers – Daddies who are worlds away from their babies today – longing for little arms wrapped around their neck, squeezy hugs and butterfly kisses.  SGM has never been home on Father’s Day to be celebrated by his kids – but no Daddy has ever been loved so fiercely. 

The following letter was written by SGM on the battlefield in Afghanistan, July, 2010, after the district special ed director reduced the hours of paraprofessional support for RM at her YMCA summer camp – without prior notification, or grounds to do so. [It was originally shared here.]

Thank you, SGM. Your children are so blessed by your love, strength and courage to fight for them on ANY front.

 

Dear [Special Education Director],

My Name is [SGM]. I am the father of [RM] and a taxpayer in the Town of [StimCity].  I am currently deployed to Afghanistan as the Operations Sergeant Major for [an Infantry unit].  You may recognize the unit as [part of the battalion] is stationed in [StimCity] on Main Street and is one of my companies.  Currently, there are 499 soldiers deployed here from Connecticut of which I am responsible for their care and well-being in an extremely hostile environment.

The key to my success in the past 24 years, 3 wars, 7 countries and an untold amount of soldiers is COMMUNICATION.  General Patton once said, “keeping the foot soldier informed is incalculable.”  This holds true in the civilian world and business world of which you, [Special Ed Director], and your co-workers are currently employed.

I find it hard to believe that anyone can actually get up in the morning and look themselves in the mirror and say, “I can’t wait to make someone angry today.”  So, I am thinking that all of what I am being told is a huge breakdown in communication. If this is the case, we are failing not only our children, but ourselves.  These children are our future – no matter how disabled.  These children will grow up and become the Department of Education, Police Officers, Firefighters, and Accountants of our retirement accounts.  I am thinking again, that we should do our best to help them in any way possible.

“Department of Education”… This makes me think that “educated” people work there.  And being such an important department with what I can only imagine is a very large salary budget (above the 600K maybe?) I would assume that [StimCity] would hire qualified personnel.  So, I am going to go out on a limb here and assume that all the people included in this email are educated and are qualified.

So this leads me to my question… Why am I having to write this letter from AFGHANISTAN to find out why a Town Worker that I assist in paying the salary for can’t seem to pull it together and communicate with families in a nice, civilized way?  Why are grown adults having to resort to email and lawyers to discuss the programs that children in a town as large and prosperous as [StimCity] are entitled to?

COMMUNICATION.

Somewhere along the line, we have a communication failure.  In my line of work this is quickly identified as ‘the dead pile up on the battlefield’.  In this instance, the ‘dead’ would be the children and parents that have come to a dead-end with a department established to HELP find them solutions to their issues.  We are failing.

Many people, who have little inside knowledge of how the military works except for what they see on television, do not understand the real way we communicate in the Army.  I very seldom bark orders, yell, nor do I ever belittle, degrade, chastise or berate soldiers in daily duties or on the battlefield.  I give CLEAR orders and GUIDANCE in a voice that establishes trust and understanding.  I lead by example, and in return earn my soldiers’ undying trust, devotion and RESPECT.  They will follow me anywhere as long as I COMMUNICATE to them what we are doing and why.

We call this ‘Task and Purpose’.

With that, we accomplish amazing things.

So, [Special Education Director and Staff], what is YOUR TASK AND PURPOSE?

If you cannot answer this question without looking at your job description then you are wrong.  If you did look at your job description, you will not find the words ‘compassion’, ‘understanding’, ‘helpful’ and ‘committed to what is right’ – Reason: they are expected of everyone regardless of what we do for a living.

To help in this process I will be more than happy to sit and communicate with each and every one of you.  I will be home shortly for 2 weeks, and in a few months I will return for a longer stay.  I will be available morning, noon and night to discuss my daughter and her education, the Department of Education and even some of my experiences in better communication.

I welcome an open dialogue that will promote a FRIENDLY PROBLEM-SOLVING environment between parents and [StimCity Personnel].  Because if we fail this cause – at some point – enough people like [us parents] will get together, pool resources and communicate together to form a plan that removes roadblocks to success.

I look forward to working with all of you to come to an agreeable solution to what is really a very simple problem to fix.

Respectfully,

SGM


Bright Lights, Big City

Right now, my baby girl is at school.  A new school.  A better school.  And I’m so happy for her.

But we all know bittersweet moments – we’ve all been there.  Rarely are there achievements and good times in StimCity without a little twang of ‘ugh’ to go along with them.  It’s the nature of the beast.

RM’s new school is in the city about 15 miles away.  I know that doesn’t sound like much, but it is a huge departure from the 1 mile away from home her preschool was.  So as exciting as this morning was, and as thrilled as I was to know I am sending her on to bigger and better things – my heart ached as she pulled away in the new van, with new driver and monitor – off to the big city.

But there will be bright lights in that big city.  MY Bright Light, for one.  Her boyfriend, Rock Star, is another Bright Light.  And I even know of a couple of the other Bright Lights that go to school there, too.  Then there are the teachers and staff at the school – MORE Bright Lights.  It is a true community in this school.  Like ‘CHEERS’ — where everybody knows your name and it feels like home. 

So yes, she’s off to the Big City – but there couldn’t possibly be a nicer, more friendly small-town feeling when you walk through the doors there. 

That’s where my baby will shine her Bright Light.


When the End is the Beginning

Today is a big day.

A bittersweet day.

RM is about to get on the bus with ‘Miss Joanne’ for the last time.  It will be the last time she goes to her preschool here in town — the last chance to hang out with her ‘typical peers’ there. 

“Buh-bye, Risdofer!” — “Ris” *clap* “dooo” *clap* “ER!” *clap* (Christopher)

Oh yeah, it’s ‘bye-bye’ to the incessant stimmy clapping of every syllable out of her mouth — thanks, Preschool Staff — way to go giving her THAT lovely perseverating gem.

This End is really a bright, new Beginning.

RM starts her new school on Monday — a school built just for her and her peers who need the kind of education that is tailored to their needs.  There will be ABA therapy, potty-training, and more speech therapy than you can imagine.  THEY WILL USE SIGN LANGUAGE WITH RM — BECAUSE THAT IS WHAT SHE USES — not whatever form of communication that is the cheapest and easiest for the district yet is lost on her. 

She will be in a school with a teacher-student ratio of 3:2.  That’s right folks — there are MORE teachers than students at this school.

How much does it cost you ask?

Well, it costs about $150,000 per year.  Yes — that is astronomical.  However, if the money wasn’t spent today, it would cost upwards of $3 million to care for her as she grows up without the help she needs now.  So that seems pretty reasonable to me. 

1 in 110 kids in the US — 1 in 88 military kids in the US.  The ‘tsunami’ of children growing up with autism is coming and it will wipe us out in the long run if we do not intervene NOW.

Ok — back to the bitersweet ‘goodbyes’ today.  I am grateful to RM’s teachers and how they have cared for her in the last two years.  I am sad that we couldn’t be closer because of the bully Sped Director.  I think RM’s teacher runs a tremendous preschool class — it just wasn’t working for RM.

So I will be picking up RM from her last day at preschool this morning, armed with handmade cards and presents for all who took such great care of her — I know they love my baby girl.  Who wouldn’t?


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