I’m over at the Autism Speaks Official Blog today talking about the complex issues facing access to autism care for military families and why HR2288 – Caring for Military Kids with Autism Act is so critical. April is coming and there are so many ways to get involved in spreading awareness whether blue lights on your house or simply starting a conversation with someone and sharing what autism means for you and your family.
“April is not only Autism Awareness Month, it’s the Month of the Military Child. As a military spouse and mother to a child with autism, I’m here to spread some multidimensional awareness by exploring how these two pieces of the puzzle fit together, or rather how they do not. I apologize in advance for the absurd amount of acronyms, but bear with me as I try my very best to demystify the whole autism-military thing.”
For the entire article, please find me on Autism Speaks HERE.
And thank you for being a part of this journey with me!
You know, I don’t have time to listen to people’s emotional white noise. Ever. Drama? Forget it. Don’t clog my day with that crap and for the heavenly sake of that guy named Pete – do yourself an even bigger favor and focus on what truly matters. I’m so sorry your suit didn’t come back from the cleaners and there were locusts. That really sucks for you. Hold your breath while you wait for my Hallmark card in the mail – that will put an end to your misery.
We are at the end of Autism Awareness Month and I am exhausted by the needling, infighting and general lack of cohesion when it comes to autism and the Who, What, Where, When and How it all should be addressed. Quite frankly, since it all sounds like a Hatfield and McCoy episode of Scooby Doo, I never bothered meddling into what the actual arguments are. I just know some folks dislike Autism Speaks and I know there are celebrity autism experts that spend all of their energy nay-saying any treatments they don’t agree with whether or not they work for any of our kids.
There are those that consider it wrong to want to ‘fix it’ if God forbid you want to fix autism itself – or find a ‘cure’. In a life that leaves little room for strategic war-gaming of such things as my choice of idioms, pronouns and prefixes in everyday conversation – it seems the emphasis is better placed on actual solutions rather than semantics. But that’s just my lowly, humble opinion.
My daughter is a Rock Star. BOTH of my children are Rock Stars. They are each unique, loving and amazing rugrats. Each has challenges, though vastly different from one another. My 7-year-old son is brilliant and handsome and has the biggest heart. He also is an elderly man in disguise and still hasn’t caught on to the hype of riding a bicycle. The Boy needs the tags cut out of all of his clothing, the shower is too loud for his ears and he cries – A LOT. He very well may need to start counseling soon as his emotions are truly overwhelming at times.
Having 4q Deletion and autism as her own challenges, RM struggles with verbal communication, transitions from one activity to another, rather dislikes the word “No” (unless she is using it) and carefully doles out her affection and emotions in strong, short bursts – occasionally with her hands.
But is it wrong to want so desperately to wave a Magic Wand and make my children’s challenges disappear?
It’s not your job to answer that for me.
Is it wrong to want to ‘fix’ autism?
It’s not your place to decide that for my child.
In this sometimes convoluted country of ours, parents are put on trial for neglecting to seek appropriate medical care for their ill children because their spiritual beliefs forbid scientific intervention. Yet millions of parents fighting tooth and nail to get help for their children with developmental disorders are being judged by a different jury for wanting to ‘fix’ their child.
Give me that Magic Wand and I’ll tell you what I would do with it.
With one grand, sweeping stroke I would whisk away my children’s pain in an instant – leaving nothing behind but a wispy trail of sparkled fairy dust. I would not wish the 4q deletion and autism away, or change the path of the journey itself. I know that challenges are inherent to learning and growing, and are therefore irreplaceable life experiences. Our struggles shape who we are and make us unique and instantly recognizable by our Maker. Physical and emotional pain are a natural part of life as well. But can anyone honestly say they would not take away their child’s stifling pain if that Magic Wand existed? You bet I would. And while I was at it, I’d make all the clothing in this world tagless and soft as a baby’s butt.
Listen. It’s not about the language we use to describe our struggles, or the differences between what works for you or me. It’s not about whether I say ‘lives with autism’ or ‘is autistic’ because I forgot for one moment to carefully craft my words into politically correct jargon. Instead, it’s about the commonality of wanting the best for our kids and adults living with special needs as defined by simple sensibility.
Rather than nitpicking sound bites or the actual effectiveness of blue porch lights, let’s get off our asses and change the world.
We can start by providing the very best opportunity for people with developmental disorders to achieve meaningful communication whether by voice, sign or machine. We can teach others what autism is from our own experiences without prejudice or judgment as to which end of the pool your autism treads water. We can offer that Warrior Mama on the ledge a bit of help rather than staring at the train wreck of her teenager melting down in the grocery store. We can offer her a night out and a few drinks without autism around – a personal favorite.
We can hold our government and legislators accountable literally and monetarily to protect and provide the right to an appropriate and productive education as children and young adults. THEN we can continue that support for our adults with autism by accepting nothing less than the absolute right to live in a safe and comforting home whether an individual lives independently, with family or with compassionate professionals. We can go one step beyond that and further support these individuals by helping them create a dignified, spirited sense of self by providing meaningful employment whenever possible.
Lastly, it’s not about the organization you work with or the title after your name. You are either invested in making the world a better place for people living with autism or you are not. This includes those of you not personally affected by autism – wait a minute – no such person exists. So invest yourself. Now.
We all have a list of things that we would and would not change if given that Magic Wand. But my cape never came back from the cleaners and the tsunami of autism is coming whether I want it to or not.
So how about we step out of Fantasy Land and instead of waving bogus wands around we just ‘FIX IT’?
[Editor’s note: Jess over at Diary of a Mom wrote a post that further discusses why different points of view are important, and I encourage you to read her fabulous account of her visit to The White House on behalf of all of us living with autism in our lives – which really means ALL OF US.]
April is nearing it’s end. The showers of awareness will hopefully bring new blossoms of hope and change. Because April is Autism Awareness Month and the Month of the Military Child, I am reposting the full text of my article that was originally published April 5 on the My Army Reserve Warrior Citizens Blog.
It was my first official April as a fully licensed Autism Awareness pitch woman. I started with gusto and am now feeling deflated with a case of laryngitis from shouting from the rooftops that my kid and others with autism are IMPORTANT and SPECIAL and deserve to be heard whether they can speak for themselves or not.
I am looking forward to May as a time to renew and regroup – again. To take just a moment and breathe. To watch the flowers bloom – and know that I planted a fruitful seed or two that will make life just a little easier for my baby girl and others like her.
I hear the crackling of the line as I picture a string seven-thousand-miles long, reaching far across the world. On the other end, a tattered paper cup held to my best friend’s ear.
“Honey, our baby has autism.”
After great pause, my soldier replies — “Tell me what this means. Please tell me she isn’t going to disappear down the deep, dark hole of autism.”
We knew what autism was — we just didn’t see it coming. That phone call to my husband in Afghanistan would mark the beginning of a world war to get our daughter the help she needed.
“RM” (her alias) was born with 4q Deletion Syndromeresulting in multiple disabilities. Her first three years were filled with surgeries, durable medical equipment, prayers of desperation and cheers for every ounce of weight she gained and every inch she grew.
I can tell you — autism is so much more terrifying than open-heart surgery or feeding tubes. Autism affects EVERYTHING and there is no surgeon or medical device that makes it go away.
Autism is a complex neurodevelopmental disability. As a spectrum disorder, challenges vary greatly from one person to another. It primarily affects communication and social abilities. Severe sensitivity to noise, lighting, changes in routine are prominent. A child with autism may have tremendous difficulty with fine motor skills — holding a pencil, toileting and other self-help skills such as buttoning a shirt are extremely challenging. Feeding difficulties, digestive disorders and a limited variety of food preference also affect the medical health of a child with autism. My baby girl LOVES her cheese.
While my husband served his second tour in Afghanistan, I was wildly researching what to do next. We are an Active Guard Reserve family living within a civilian community in Connecticut. Our school district has a deplorable reputation; so I quickly hired the best special education attorney in the state at a cost of thousands of dollars. A luxury most families do not have. See HERE to learn how my husband got involved.
I read special education laws. I studied everything I could about treatments and therapies. I started looking into TRICARE and what was available through insurance. I had applied to our state’s Department of Developmental Services when RM was born and found we were still on the wait-list for assistance. Medicaid gave me the run-around for nearly a year. I was appalled. And enraged.
I wanted to know more. According to a Department of Defense (DoD) report, one in eighty-eight active duty dependent military children lives with autism. The epidemic is undeniable. Of those diagnosed, less than 10% are receiving the appropriate therapies they need to secure a hopeful future. Frequent changes of duty station, cycling deployments and disruption in family life are all overwhelming obstacles to accessing appropriate therapies. And every time a military family moves, they drop back down to the bottom of the food chain for services.
I started a dialogue with my legislators. The numbers did the talking for me. Jaws dropped and silence filled the room — 1 in 88. Our military children who send their mommies and daddies off to war are being left behind — without the treatments PROVEN to help them.
It is fourteen months later; we finally have access to TRICARE’s ECHO autism services and our school district has conceded to placing our daughter in an appropriate out-of-district program. Victory.
Along the way I learned many valuable lessons and met the most incredible people doing great things for our children. I have renewed faith in our legislators to do the right thing and make TRICARE cover autism benefits as part of standard care for active duty AND retired dependents. I feel empowered by the knowledge I have gained in this process and I look forward to passing it along to those beginning this journey themselves.
April is the Month of the Military Child and Autism Awareness Month — we will continue to take every opportunity to share our story with anyone willing to listen. We will fight back the exhaustion, frustration and tears; so that in the absence of our soldiers, our families will find the courage to keep moving forward. We will continue to strive for a soft place to land for our kids out in the world — where they may find acceptance, compassion and a future filled with peace.
As I sit in my living room on ‘vacation’ and stim on Doritos and mid-priced Cabernet at exactly 4:54pm, Day Eight, I realize that it just doesn’t get any better than this. I mean who else has it this good on vacation? No lines, heat exhaustion or overpriced bottles of water. I don’t need reservations, bathing suits, passports or matching neon orange tees that say ‘Resident of Stim City. If you find me wandering alone, please take me to the Security Booth and have them page Mama at the bar’.
For some wild reason, it is so much easier to live without a ‘real’ vacation when you have the great excuse of a spouse deployed and a child with special needs. Though I know some incredible Mamas that actually take their children (including those with autism) on vacation solo, I don’t have balls that big. This year, I no longer have the MIA spouse excuse come summertime. For now, we have chosen to be still and continue the quest for ‘settling in’ from a deployment and new beginnings at a new school. But in August, we will attempt some camping trips and a trip to StoryLand in New Hampshire, and I can assure you – we will have the most detailed exit strategies known to man. That’s how you roll when you vacation with autism.
Are we there yet?
Nope – here I sit because we’re just not there yet. I’d like to spin a fantabulous tale about the antics of spring vacation – our trip to the science center, crafts that would make Martha Stewart weep, the million odd little projects I completed around the house, our hiking adventure or the afternoon at the water park that was so much fun my head nearly popped off.
Of course, I’d be lying my ass off. Because instead on Day Three RM popped hot with a double ear infection and on Day Four I was puking my guts out. By Day Five, SGM had taken the day off to assist and I fled the scene faster than a Bugatti Veyron (my new fantasymobile). I had ‘errands’ – quite legitimate ones that grew into anything I could think of to avoid coming back to my vacation with autism. I returned some things to the store, bought some shoes on sale (always a momentary high), got a call from my sister in distress and sat with her in a parking lot gossiping for an hour and eventually made my way home. It was the closest I had come to anything resembling a vacation.
Maybe next year we will anticipate spring vacation with a renewed sense of vigor, pack our bags and head somewhere dreamy – somewhere that we actually could make use of sunscreen and little drink umbrellas rather than xanax and shoe therapy.
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!]