[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.
I don’t really know what that means or where it will take me, but I’m sure going to enjoy it. I think.
You see – after fighting for so long and for so many things – I just don’t know what else there is right now. It’s going to take some time to figure that out. And a cruise. I think it’s going to take a cruise somewhere in there, too.
Thank you to everyone that walked alongside me and my family on the journey of the last year – through a deployment, a diagnosis, a battle for justice and the resulting victory yesterday.
But the village that surrounds us in our daily life with autism is a gift. By village — I mean EVERYONE who takes a moment to ask how things are going, each fellow Warrior Mama who’s getting it done, the fathers that soldier on in support of their families and especially the childhood pals that cut blue puzzle pieces out of construction paper and tape them to their front door.
I am grateful. I love you all and I am so blessed.
See you when I get back from a ‘day off’ – whatever the hell that means!
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.
1 in 110 US kids and 1 in 88 US military kids have autism NOW.
If you were on the front lines in Afghanistan or perhaps dropped into Libya tomorrow, do YOU want the guy backing you up worried about his kid back home with autism who isn’t getting the services or support he or she needs?
If you cannot accept responsibilty for understanding, accepting and supporting these kids and families – then you ultimately are missing out on knowing some of the most incredibly brilliant and loving and unique individuals. You also miss out on the most amazing things you could learn from being friends with one of these awesome Rock Stars. Seriously. Your loss. Not to mention, their parents are some of the most fiercely passionate and articulate individuals you will ever meet.
If you do not pass awareness down to your own children then your kids will miss out on experiencing what it’s REALLY like to run with the cool crowd.
And last I checked, kids grow up and get older.
If we do not invest in the support these kids need NOW to help them grow up and contribute meaningfully to society – you and I will pay BILLIONS more to care for them down the road. That was BILLIONS with a ‘B’.
The numbers just don’t lie. Every 20 minutes a newbie joins the autism club, and let me tell you – you are going to become ‘aware’ eventually.
Aspergerians will eventually corner the technology market and you just might be asking one of them for a job someday – or ironically, asking them for help with your social networking tools.
Not to be flippant – but really? Our kids with autism are someday going to rule the world with their creative and mathimatical brilliance, and their lack of getting caught up in your BS.
Get on board and enjoy the ride instead of missing the train and paying the price.
LIGHT IT UP BLUE and spread the word, My Friends.
[Editor's note: I will be highlighting a number of military-specific topics in relation to autisn during the month of April, so please keep an eye out!]
I forgive you. Because it is the greatest gift of love to myself. stimcity.org/2014/01/23/i-f… and it also just might fuck with your head, too. Hash tag defined: #cmkaa = Caring for Military Kids with Autism Act (H.R. 2288) 1 month ago