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.”
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: email@example.com or follow her on twitter: http://www.twitter.com/Stimey
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.
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?
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.
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.
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?
[Editor’s note: To echo Jess from Diary of a Mom today, I am reposting my own PTSD experience to share again.]
There is an interesting topic of discussion brewing in the autism community… Stemming from an otherwise “typical” conversation between an amazing group of moms navigating life with autism on board.
After blurting out “PTSD” at a recent gathering of other Warrior Mamas, I thought for a moment my snarkyness had gotten the best of me, and perhaps I had gone a little too far this time. After what felt like the longest and most awkward pause in conversation, in a room full of women I had never met before, the reaction so far has been nothing less than positively healing… I think my fellow Mama did the most spectacular job bringing this topic out of the darkness and into the light >here<.
It seemed like a great idea — Sergeant Major had the day off today, the kids were at school, and we decided to begin the arduous task of prepping for our ridiculously gigantic yard sale this spring. FEEL THE PURGE, BABY is our new motto.
I don’t know what the hell I was thinking.
After less than an hour of sorting through boxes and piles of everything you can imagine — I suddenly felt like I had just stepped away from the most unbelievable car wreck, where everyone is staring at me because they cannot believe I haven’t a scratch on me. Except — I am broken everywhere on the inside.
Five long years of everything I had planned to do lay before me, tearing away at my heart, ripping my soul to shreds. A set of small plastic pots from when my son begged for the third spring in a row to plant some sunflower seeds and watch them grow. I had finally bought the seeds, and now had no idea whatever became of them. There were empty picture frames by the dozen. The most beautiful pictures of my boy when he was 3, that never saw the light of day. I stood there unable to move for what seemed like hours. I felt stricken by those deep, dark greenish eyes and how he must see right through me. Every promise I had made to him that disappeared amid the chaos of 4q and deployments and autism.
Then there were the fairy wings I got RM to wear for preschool when she was 3. It had been Princess Week. Most of the little girls wore their favorite Disney Princess gowns every day to camp, beaming with pride from their tiaras down to their slippered toes. RM wore the precious green wings long enough for me to take one picture outside of the school.
Really, it was the absence of fruitless promises to my little angel that burned me. There were no piles of projects never touched, nor dress-up clothes for her to grow up and fuss with. Nothing of what one expects to share with their baby girl as they watch her grow into a young lady. Rather, boxes and boxes of medical supplies and feeding tube bags.
It was more than four years of struggles and surgeries and the sweetest, lingering goodnight kisses PRAYING they would not be the last — hitting me all at once — a powerful, silent undertow dragging me deeper into an abyss of emotion, filling my lungs with salty tears — desperately flailing to stay afloat —
With autism on board.
I cannot describe how blessed I feel that in a flood of sobs I was able to tell my SGM how I was feeling today… and he understood completely. He had been sorting through his five years of wreckage, too.
My daughter was diagnosed with PDD-NOS/Autism Spectrum Disorder on Groundhog Day. Ever 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!
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 sharks. This 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.
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?
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’.
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.