In the Name of Love

[Pride (In the Name of Love) by U2]

 

Do you believe in the significance of dates?

I do.

Check it out —

February 2, 2010 — Groundhog Day

My daughter was diagnosed with PDD-NOS/Autism Spectrum Disorder on Groundhog DayEver see the movie?  Do you live with someone who has autism?  Enough said.  I woke up the next day and what do you know?  Still autism.  Still poop everywhere.  My husband was still deployed.  I still had a headache.  And I had to take the trash out — again.

 

April 20, 2010.

Our subsequent Individual Education Plan (IEP) meeting with our daughter’s school district was April 20.  This was the meeting that the district Special Education Director had refused to let me videotape in SGM’s absence.  See HERE for what I did about THAT.

Just look at what else took place in history on April 20:

  • 1775 — The Siege of Boston was getting the Revolutionary War underway.  Go, Yanks!
  • 1792 — France declares war on Austria launching the French Revolution.
  • 1912 — Opening day at Fenway Park in Boston.  Needed something positive in here.
  • 1984 — The Good Friday MassacreYou know I love hockey.
  • 1999 — Columbine High School Shooting.
  • 2010 — Deepwater Horizon oil rig explodes in the Gulf of Mexico, killing 11 and causing 2nd largest environmental disaster in US history.

It was a day of devastation in our home, too — and a declaration of war

The district refused to acknowledge RM’s autism diagnosis by a pediatric neurologist.  They offered nothing remotely appropriate to address her educational needs; so we requested that RM be placed at an autism program out-of-district.  The Sped Director immediately denied the request.  It was the beginning of a yearlong pursuit of justice for RM to secure the education she is entitled to under the law.  An endeavor that would test our family to its very limit of FAITH and HOPE and sheer DETERMINATION.  There would be small victories along the way, amidst long and exhausting battles for the simplest of progress.

 

July 6, 2010.

The only day available to meet with our attorney to discuss the upcoming mediation with the school district.  It was my birthday.  I was beaten-down and lonely.  My husband had now been deployed for the last nine months and I was feeling so isolated.

Let me share with you the karma of a July 6 birthday:

  • 1785 — The ‘dollar’ is chosen as the monetary unit for The United States.  How fitting, I had given thousands of those to the attorney.
  • 1885 — Louis Pasteur successfully creates a vaccine for rabies.  Hmmm — might come in handy at mediation.
  • 1912 — Birth of Heinrich Harrer.  He is best known for his book, Seven Years in Tibet.  Harrer was one of the first folks to make the ascent of the North Face of the Eiger in Switzerland.  I can identify with someone who started on the wrong path, found enlightenment, then conquered insurmountable odds to reach a goal.
  • 1935 — Birth of the 14th (and current) Dalai Lama.   I appreciate the responsibility he has as a spiritual leader.  The irony here is the similar hypocrisy in a school district’s ‘purpose of serving the child’ while misleading parents — guiding them to make choices based on political doctrine.   Just sayin’ — sorry, Dalai Lama.

After meeting with our special education attorney, I felt confident that we were armed with enough evidence to win the argument for outplacement.  After all, our district had no certified behavior analyst (BCBA) on staff to administer an Applied Behavior Analysis (ABA) program — the ‘gold standard of autism treatment’.  They simply didn’t have the staff or the space to accommodate RM’s needs.

 

July 16, 2010. 

Mediation.  Oh — and RM’s birthday — of course.  As my husband was still tending to matters in Afghanistan, I had to enlist the help of my friend Lorazepam to be my co-pilot.  I was a complete wreck. 

Other notable July 16’s:

  • 1861 — President Lincoln made the order to send troops into Virginia, it would be the first action initiating The Civil War — “First Battle of Bull Run”.  ‘Bull Run’.  Seriously — I am not making this stuff up.
  • 1945 — After hobbling home for repairs caused by a Japanese bomber, the USS Indianapolis departs again from San Francisco.  It would later be sunk by Japanese torpedoes on July 30.  564  of the 1,196 sailors on board spent their last hours writhing in frigid waters being attacked by man-eating sharksThis school district BS is just as torturous.
  • 1945 — Busy year.  The Manhattan Project successfully detonates its first plutonium-based nuclear weapon in New Mexico.  Boom.
  • 1948 — The first hijacking of a commercial plane.  I felt like one of the passengers.
  • 1967 — Actor and comedian Will Farrell was born.  I just added this because I think he’s hysterical and I needed the laugh.
  • 1979 — Saddam Hussein assumes power in Iraq.  Another freaking dictator. Geesh.  I think our Sped Director took her cues from this guy.
  • 1999 — John F. Kennedy, Jr., crashes his Piper Saratoga aircraft and dies.  Heartbreak.

After an emotionally grueling 5 ½ hours of mediation — Lorazepam had since fled the scene — I was left on my own with little ability to process what had just happened.  I was told ‘your vision for RM is vastly different than ours.’  Really?  Because I think she is a phenomenally bright young lady capable of stepping right over your void of intelligence and becoming Valedictorian one day — you would agree if your ‘vision’ wasn’t skewed by dollar signs. 

With the district’s objection to any possible access to the outplacement school, they offered instead a set of Independent Educational Evaluations (IEEs) to include Speech, Occupational Therapy and a program/placement recommendation by a child psychologist.  In the meantime, her therapies did not change and her diagnosis of autism was still the elephant in the room — I think the elephant even farted, but no one was man enough to acknowledge it.

Months go by.  RM continues in the same preschool with the same minimal services she has had since she was three — a pinch of O/T and a dash of speech therapy.

 

January 20, 2011. 

What?Is it somebody’s birthday in the house?  

YES?! 

So let’s schedule another IEP meeting!!! 

After several months of evaluations and SGM’s return home from Afghanistan, we head back to the table to try again on his first birthday home in three years.  Nice.

The history of January 20:

  • 1841 — The island of Hong Kong is occupied by the British. 
  • 1885 — L.A. Thompson patents the first roller coaster.  I dispute this – I truly believe IDEA is the origin of the roller coaster.  Just sayin’.
  • 1986 — The first observance of Martin Luther King, Jr., as a federal holiday.  I have a dream.
  • 2009 — Barack Obama was sworn in as the first African-American President of The United States.  I voted for him and I have to say I am deeply disappointed in the lack of blue lights on his front porch this past weekend.

After nearly three hours at this IEP meeting, we had not finished reviewing the evaluations.  The child psychologist had recommended that RM move on to a typical Kindergarten class in September at the age of five years and two months — ‘possibly with the support of a paraprofessional’.  Um.  My kid is AWESOME.  But she isn’t equipped at this point to hold a pencil, much less stay afloat in a curriculum that includes science and social studies.  And oh yeah — she has apraxia of speech and can barely talk. 

We secure an agreement to have the child psychologist observe the typical Kindergarten in district that RM would enter AND the outplacement school.  A small victory, but we walked away still terrified for RM’s fate.

The IEP meeting would be reconvened 6 – 8 weeks later.  More like ten weeks, but who’s counting?

 

TODAY, April 4, in history:

  • 1581 — Francis Drake completes a trip around the world and is knighted for his efforts.  I can work with this.
  • 1814 — Napoleon is forced to abdicate and is exiled to Elba.  Can we exile crappy Sped Directors to North Korea?  THAT WOULD BE AWESOME!
  • 1818 — The United States adopts the Red, White and Blue as our nation’s flag.  Hmmm.  Now we’re talking.
  • 1945 — US troops liberate the Ohrdruf labor camp in Germany.  Liberation of the innocent.  I like it.
  • 1949 — The North Atlantic Treaty Organization is founded.  Purposeful policy AND civility among nations?  Novel.
  • 1968 – Dr. Martin Luther King, Jr., is assassinated in Memphis, Tennessee.  You cannot stifle rightousness with the muzzle of a gun.  His powerful words and sentiment still echo today.

→Let’s take pause and remember the gift Dr. King was to all of us.←

Today was our IEP meeting — and we won our war for RM.  Our district has agreed to place her in the autism program we have been fighting for.  It will mean future success for RM.  It will mean peace within our home.  It equates to the first opportunity I have ever had to be a wife and mother not a therapist, special education expert, attorney — nor an exhausted woman who has forgotten her true self.  It is a victory which brings so many new opportunities for joy, comfort and renewal in the next year — for our entire family.

I find it fitting that today, April 4, a small part of our dream for our daughter has come true.  But the work is not done.  I will push on.

One war has ended — many more continue within the walls of our schools, our insurance companies and our government offices.  Millions of children with vastly different needs and abilities — and their parents — are all fighting the same battle each day and it IS. NOT. RIGHT.

I have a dream, too.  I dream the dream of Dr. King for all of our people — to include those with intellectual disabilities, developmental impairments and physical conditions which require accommodations they are ENTITLED TO UNDER THE LAWS OF THIS GREAT NATION.  It’s time to cash in our check, too – “… a check that will give us upon demand the riches of freedom and the security of justice.”  The freedom to be educated appropriately and the justice of acceptance and inclusion in society.

Free at last!

About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

19 responses to “In the Name of Love

  • Boy Wonder's Mom

    You are quite the inspiration! xo

  • Niksmom

    Aw, man, you had me in tears early on, but that picture at the end? Am.Now.BAWLING.

    Your fight, your fierce determination is what keeps me going when I want to throw in the towel, to second guess myself, to think “maybe this is as good as it gets.” Thank you for the example and for sharing the journey with us. xo

  • Cyndi

    LOVE that picture of RM! (Also love that SGM and I share the same birthday…..) Congrats – not fair that you had to fight so hard – but so glad you got what you wanted/needed!

  • Shivon

    I have never read your blog, but Beth posted a link on FB . I Know THIS battle, and you deserve a standing ovation for making those bastards do what is right. You have given me hope :) Thank you

  • Shivon

    Oh and the picture?!?! STUNNING

  • Darlene

    Never never never give up!

  • molly

    So excited – well done you!! And relish the moments where you can just be wife and mom. They are such blessings. I’m proud to call you a friend and an example!

  • Annie

    When someone googles “Warrior mom” your picture will come up. What an inspiration you are to the Autism community. RM is so lucky to have such a loving, wonderful, supportive family. Keep up the good fight because “When nothing is sure, everything is possible”.

    • Rachel

      Ha! Annie, you are a doll! Thank you. We are just so relieved – thrilled – hopeful that this is going to mean big things for our Bo Peep! Thank you for your support – it’s the vision of the entire village of us Warrior Mamas AND Daddys that will make those dreams a reality for everyone. xo

  • Janice

    Just think of the fabulous entries that you will be able to enter on those dates next year as RM soars in her new placement. I remember those days, when Tiernan was struggling to make it through the day but we had a plan for his new placement. Every day was a new opportunity for growth and he accomplished so much. The right placement, surrounded by people who cared enough to truly help him, exponentially exceeded my dreams. RM will continue to thrive. I am thrilled for you all. I can’t wait to hear about RM’s progress! Lots of love to you all! Continue to kick a$$ mama!

    • Rachel

      And you know what? I really CAN’T wait to share it all… because I truly think it matters – this shouldn’t be such an isolated victory – ALL of our kids should be getting these services and getting them early! It is an amazing day – but it just highlights the many who do not get there and that needs some fixin’, Mama! ;0)
      THANK YOU!!!
      xo

  • Adrienne

    You write with an open heart. I echo all the previous comments. I would love to know what we can hold in our thoughts/prayers/meditations for YOU. When I recall this touching story I would like to also help manifest something you are working for. I will see your dear one finding sucsess in each day. Peace!

  • Angela

    Aww this is so great! And so appropriate right now considering I am going through my son’s first IEP meeting next week!

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