Category Archives: Autism

Aware Again

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English: Logo of World Autism Awareness Day, A...

English: Logo of World Autism Awareness Day, April 2, by UN (United Nations). Português: Logo do Dia Mundial de Conscientização do Autismo, 2 de Abril, criado pela ONU (Organizações das Nações Unidas). (Photo credit: Wikipedia)

As I have written before, we can track Evan’s late-March autism diagnosis directly with World Autism Awareness Day each year.  And, as I’ve mentioned in the past, that coincidence has been both a blessing and a curse.  The first WAAD was about 5 days after he was diagnosed, and the onslaught of autism information everywhere we turned was at once informative and overwhelming.

As Evan has grown and developed, so has the world’s understanding of his condition.  And, as was bound to happen, so have the ways in which people define, treat, study, and think about autism.  In recent years, I have noticed more rifts and disagreements among those involved.  Discussions and disagreements have gone from “What therapies are you guys trying?  We have been considering that; right now we are researching this one” to “I can’t believe they are still doing that.  Everyone knows that this is better.”

These differences have also spread to the organizations that represent the autism community.  For the past six years, our family has chosen to help raise funds for Autism Speaks.  Years ago, we noticed that they seemed to be the most globally organized powerhouse when it comes to research funding, lobbying efforts, and public information.  However, there is also a host of phenomenal smaller organizations that are focused on other important issues related to autism.  And, as happens in so many other arenas, the large powerhouse can do things that negatively affect the smaller organizations.  (Cancer survivors who have tired of seeing that familiar pink ribbon know how this goes).

For us, this means that we also try to support a handful of smaller organizations that we feel are doing great things.  I try to stay away from heated rhetoric that pits one well-meaning organization’s members against members of other groups.

I also reflect on our progress as a family and, most importantly, Evan’s progress as a person with autism.  I realize that without the high profile of the large organization, our community would not have nearly the resources or understanding that we enjoy now.  I also recognize that without the efforts of those who were in this business long before Autism Speaks came around, the therapies that benefit Evan most would never have been established.

But mostly, I look at the people around us who continue to amaze us.  This month, a bureaucratic disaster led to Evan (among many other children) mistakenly being dropped by the state, which meant that some of his most necessary services would no longer be available to him.  In the days that I spent untangling this mess, I encountered truly selfless individuals, some working free of charge, to help us get what Evan needs.  Nobody asked what group I back, what our philosophy on scientific research is, or what behavioral approach we follow.  These people simply put Evan and his needs ahead of all else.

We are now halfway through Autism Awareness Month, and my wish is that all children receive the access, understanding, and care that they need.  (In case you are wondering, far too many do not).  I hope that legislators, researchers, school districts, fundraising groups, and academics can put personal agendas aside and work together toward common-sense solutions to help this generation of children.

All Aboard the Toilet Train

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A few days ago, Evan suddenly found a new phrase to blurt out at odd times.  He’d look at me, smile, and yell, “Toilet train!” and then collapse into a fit of giggles.  While this wasn’t the first phrase he’s ever done this with, (“Mushroom on a stick!” and “Elephant!” are recent favorites that come to mind), this one did seem much funnier to him than anything in recent memory.  But, this type of thing happens every once in a while here at the House of Autizzy, so –other than a brief moment of wondering if he was expressing pride at his record four years in the toilet training process– I didn’t pay it much attention at all.

And then, on Sunday, we were on a little family expedition.  The other kids were campaigning to watch a movie in the car since we were anticipating a longer-than-usual car ride, and I obliged.  I turned on the DVD player while Randy drove, and the movie The Incredibles started playing.  The Incredibles has been Evan’s favorite movie for the past few months, so he was all smiles as the movie started.

Randy and I were alternately discussing the best route to take and absentmindedly chuckling at some of the movie dialogue (due to the car entertainment system , The Incredibles is one of seemingly thousands of movies that I have whole scenes of dialogue memorized for but have probably only actually seen once).

Suddenly, we were listening to a scene in which Mrs. Incredible and Violet, the daughter, were arguing.  Violet yelled, “The only normal one is Jack-Jack, and he’s not even toilet-trained!”

“TOILET TRAIN!” Evan squealed giddily, cracking us all up.  All five of us were suddenly laughing.  I looked back at Evan, and he was looking–yes, with eye contact and everything– at each of his siblings and grinning, as they looked back at him and laughed.  I was struck by this stunningly normal family moment, all of us laughing at the same joke.  All of us suddenly getting what Evan has been laughing at for days.  Evan suddenly connecting, sharing his joke with us.

In the past few days, Evan has made it clear that the hilarity of the phrase “toilet train” is in a simple misunderstanding of the meaning.  He lines up his train cars (of course) and then tells us, “Credibles say toilet train!” and cracks up all over again.  He’s picturing a train of toilets…which, in all my life, had never occurred to me when I heard that phrase.

Now, though, it’s all I’ll ever hear.

If only we could get to the bottom of Mushroom on a Stick…

On Statistics and Springsteen

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In a house where a ‘crazy day’ is the standard, Thursday was one of those days when everything was just a bit more wacky than normal.  One of those days that gets completely rearranged because a kid wakes up sick…reschedule appointments, call the pediatrician, take the kid in for a strep test (positive), run to the grocery store, drug store, physical therapy for a knee injury, get kids off the bus, snacks for everyone, dispense Motrin, Allergy meds, and antibiotics as needed…but all along, I knew that if I could just make it to the evening, I’d end up with a major payoff:  tickets to Bruce Springsteen and the E Street Band.

And, like the day needed any more nuttiness thrown in, my smartphone lit up and buzzed all day with news reports of the latest CDC statistic:  1 in 88.  Deep breath, eye roll.  One in eighty eight children (one in fifty four boys) is now diagnosed with autism.

Another deep breath, another eye roll.  Autism awareness month is coming in April, so I have come to expect a full-court press of Autism in the news this time of year.  But sometimes it kind of sneaks up on me.  And sometimes, I’m just not sure what I can do about it.  One in eighty-eight.

As quickly as the new statistic tried to assault me, I deflected it.  Not today.  Not right now.  Don’t suck me in.  Not while I’m taking Elena’s temperature for the fourth time and trying to count backwards to figure out when she can have her next dose of Motrin.  Not while I’m reminding Ryan to finish his math homework.  Certainly not while I’m digging through the stacks of CDs looking for my copy of Greetings from Asbury Park (which I never found, by the way…but I did discover that we own three –THREE!—copies of Born to Run).

Eventually we made it out the door to the concert.  While munching on crab fries and sipping a beer before the concert began, Randy and I had a brief discussion of the new statistic.  We chuckled over Randy’s darkly comic suggestion that we reassure friends and family who had, with best of intentions, brought the stat to our attention by telling them, “Don’t worry!  We are your ‘one’!  As long as you don’t meet more than 88 kids, you’re safe!”  or “In our house, it’s one in THREE!”

Then we had another beer, and moved on.  Made our way to our seats for the show (arguably the worst seats in the house—second to last row behind the stage), and the lights dimmed as Bruce took the stage.

And, as promised, the world fell away.  We Take Care of our Own.  Waiting on a Sunny Day.  The Promised Land.  For those of you who have never experienced a Springsteen concert, the closest I can describe it is…it’s like church.  Not fear-and-guilt church.  Raucous, spiritual, feel-it-in-your-bones, connection with humanity sort of church.  Like stumbling into a revival, or the Gospel tent at Jazz Fest.

The Rising.  Rocky Ground.  The names alone read like sermon titles.  And, somewhere, somehow, beautifully and magically enough, I became wonderfully unaware of autism.  Unaware of statistics and predictions and behaviors.  Unaware of IEP meetings, psychologists, and therapists.  Unaware of anything but thousands of people dancing and singing in unison.  Kicking the ground and raising their fists.  Dancing, smiling, and cheering.

For three hours last night, I became unaware of everything in the outside world, and incredibly, powerfully aware of myself as part of a whole.  Of the power of music and soul and spirit.  Of harmony and humanity; of raising the dead and raising hell.

There is no one in eighty-eight.  There is one that is part of a larger whole.  Everyone in that arena is a one-in-something.  Everyone is facing some statistic.  And everyone laid down their burdens and their fear to be one with each other, in three hours of joy and music.  We were aware that we are all connected; that we are all part of one community.  We are one.

That is my statistic.  We are one.

Awareness

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I’m feeling guilty.  It is Autism Awareness month, and I’ve done nothing.  I haven’t changed my Facebook profile picture to a puzzle piece.  I haven’t changed my status update to preach awareness or acceptance—though I certainly appreciate those who have.

I’m not sure why I’ve been so uncharacteristically silent this time.  I guess I figure that anyone who is my friend, virtual or otherwise, is overwhelmingly aware of our status as a family affected by autism.

Evan was diagnosed with Autism on March 27, 2007.  The first ever World Autism Awareness day was six days later, kicking off the activities of Autism Awareness month.  Quite literally, as the world first became aware of autism, so did we.  It was a strange way to get acquainted with this crazy new aspect of our lives.  I will never forget those first few hours and days after the diagnosis—the strange combination of feeling simultaneously hurt to the core, yet strangely numb—staring at the television as talk show after talk show revealed this horrible, scary world that we had stumbled into.  The parents on Larry King or The View crying over their broken dreams for their children; the video footage of children struggling with the smallest of tasks.  And knowing that everyone we knew was learning these details about our new life at the same moment we were made it all too real, too fast, too soon.

We were exposed, vulnerable—having a gigantic, painful bandaid ripped off in front of the world.  I remember very vividly the belief that I would never lose that feeling of pain, of total horror and sadness and terror. I thought anyone who said that the feeling would pass was either a liar or a lunatic.

But, against all odds, pass it did.  And now we live our day-to-day lives much like anyone else; caught up in the routine of bus stops, homework, swimming lessons, and dance class.  We focus less on the horror of it and more on the reality.  And that reality, however weird it gets, seems increasingly normal.  Like any family, we try to plan a trip to Disney World with a dizzying array of books and options and guides…and then we increase the books and confusion by 50% when we consider how to handle the trip with an autistic child.  Like any family, we look forward to the neighborhood block party, but we rely far more than the other families do on the network of neighbors and friends to help ‘keep an eye out’ in order to be certain that Evan stays safely within range.  Like any mother does in mid-spring, I try to plan a summer that will keep a proper balance of free time, playdates, vacations, and day camps for all three kids.  I just have to make sure to work those things around and between Evan’s therapy schedule and his summer schooling.

However, I’d be lying if I said that the reality of autism lies solely in the logistical headaches.  Every week brings with it a new ‘oh shit’ moment or two.  But some strange mixture of experience, resilience, denial, and a kick-ass support system usually works to help us through the most harrowing moments. And if all else fails, we get through the day with equal parts coffee, chocolate, and cheap cabernet.

Still, I struggle with what I think “awareness” should mean to me at this point, four years into our dance with autism.  Looking beyond the obvious answers—letting friends and family know about autism, making sure to educate the babysitter and the neighborhood—where are we?  What sort of awareness do we need?

We need you to be aware when you vote.  Know that autistic children and adults are recipients of medical assistance programs and beneficiaries of state and local programs.  Know that your school district is legally required to educate special needs children, and ask questions of your school administrators regarding how they will do this.  The answers will affect not just my special needs child, but your typical one, as well.

You should also be aware of autism when you are speaking to your own children.  Know that they will likely encounter classmates on the autism spectrum—teach them what it means in ways they will understand.  There are books in the library and on amazon.com that can help with that; one of my favorites is the Autism Acceptance Book.

You should be aware that autism affects the whole family, and that the other kids in the family are often most affected; that having a sibling who will throw a fit for no apparent reason can make the most well-adjusted child into a bit of a stress case.

You should be aware that most families who are dealing with autism are imperfect and messy and loving, just like yours.  We are not saints.  We have no more patience than anybody else.  We make lots of really good decisions and some really bad ones.  We are not idiots for trying the newest approach or diet; nor are we uninformed if we don’t.  We will fight like crazy for our kids, except for those days when we just can’t fight anymore, and on those days we go for a run, eat too much ice cream, ignore the outside world, or go to bed and try again tomorrow.

As we have in the past, our family will walk again this year in Autism Speaks’ Walk Now for Autism in Philadelphia on September 24 under the team name Evan’s Elves.  It is an uplifting day for us, a day of joy and hope and support.  We are always thrilled to give back to the organization that does so much for families like ours, and we appreciate those of you who have helped in the past and who choose to walk with us.

For me, awareness also means being aware of those who don’t have autism—those around us who regularly make every day life that much more bearable, normal, and enjoyable.  Those who make what we do –and what our children accomplish—so very possible.  And to you, I say thank you.