Think Different

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Image via TRPrints Etsy shop

When faced with a challenge for which there is no foreseeable resolve, I transform myself into a front-row student of the Solution. I can’t help it. I have spent much of the summer reading reading READING my way through a file box full of titles– topics ranging from cutting-edge therapies, to specialized nutrition programs, and yes, the war cries of those who believe vaccinations are the root cause of both autism and Al Qaida terrorism. Yet, much like the bear cub that recently wandered into a suburban Sears department store, I have found myself roaming through volumes of doctoral theories in feeble attempts to understand this thing called ASD (Autism Spectrum Disorder). Then, before I can help it, my amateur brain has trespassed on the property of experts who are way smarter than myself. Suddenly, I am barreling through aisles of fancy medical terms and brain foods and testimonials and toaster ovens and women’s lingerie until someone comes along and shoots me with a tranquilizer dart!

Today, I explored some Etsy therapy to avoid Certain Brain Implosion. It was a fast-acting reminder that pretty things make me happy, and BONUS when I stumbled on a pretty thing inspired by the late Apple Genius, Steve Jobs. In all of my mental-department-store-obliteration reading, I knocked over some interesting articles that discuss whether or not Steve Jobs was autistic. The Aspergians says he was (kettle?), and the more reputable blogs devoid of annoying pop-up ads say he wasn’t (although he was known to obsess over things like how many screws were in a lap top case). Perhaps this is not enough to label him ASD, but it is a cozy thought to consider that he saw the world different from the other 97% of human thinkers… not unlike my three-year-old. I have read so many words in recent weeks that it is no wonder if I develop blurry vision because of it. And yet, in all of my reading, only two have helped to make it more clear.

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…and so we will.

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Happy “Chong”-day

Birthday blog post

Today is my birthday. We all know I have never been one to keep quiet about my birthday. I tell the post man, the bag boy, the drive-thru teller, EVERYONE that I am celebrating myself on this day and it is perfectly all right for them to join in because you never know if someone might just be looking for the perfect excuse to party, so why not lend some spirit to help your fellow man? So, hip hip for me, right?

Wrong…

As of late, Salem has become nocturnal… Part of the ASD benefits package. At 4am I sent him back to bed again completely devastating his dreams of becoming the next Buddy Rich because I wouldn’t let him have his drum sticks. After several more bedside visits from my sleepless sweet pea, I cursed insomnia, ASD, and Buddy Rich and began to brew my light roast. “Happy Chong-day, Mommy”. No idea how Salem interpreted Happy BIRTH-day as Happy Chong-day, nevertheless he has been roaming the house singing, “Happy Chong-day to you” and then bursting into a fit of laughter, and I don’t have the heart to tell him to stop because people are going to wonder what kind of mother I am to let my kid watch Cheech and Chong (which I most certainly do not). So, there you have it. Happy Chong-day to me.

And then there is Mia. My sweet, compliant, peach-of-a-child, Amelia… Her gift to me this morning was a screaming, fitting sprint down the hallway while I’m chasing her in feeble attempts to wrestle some loose change that she snatched from her daddy’s nightstand. She still puts everything in her mouth, and can therefore not be left unattended with money that’s been handled by only God knows who. We are presently working on the “Yes, Ma’am” response when Mommy tells her to obey, and yet she responds by turning her nose up at me as if to say, “Nice try, Lady. You are not the boss of me.” I don’t need a prophetic word to warn me this is coming down the pipe as she’s about to round age 2. After several attempts with the wooden spoon to elicit the desired response, she strings together a host of intelligible words including but not limited to, “oh dear!, princess, Daddy, George,” and “chicken nuggets”. As far as I can tell, none of those sound like “Yes, Ma’am”. All of a sudden I remember it is my birthday and the last thing I want to do is get into a power struggle with my daughter, so I did something I NEVER do…

I gave up.

I’m usually one to stand my ground to the death in a moment of discipline, but instead, I carried her downstairs in a bundled heap, placed her in her Daddy’s arms, and headed to my pot of light roast that I brewed FORTY-FIVE MINUTES AGO!

And then it happened. The coffee filter had collapsed into a pool of muddy water, thus thwarting my caffeine redemption. And then I collapsed into a Mommy-sized tantrum that trumped anything my two year old could have dished out five minutes earlier. I’m talking cabinet-slamming, sippy-cup-throwing, silverware-drawer-clanging fit-‘o-the-year. Nothing like a happy birthday to bring out the toddler in you. I think I may have even said, “For crying out loud, this is MY CHONG DAY!”

Just as I escaped to my bed for a make shift do-over of this entire morning, I tried to muster the thirty-two-year-old maturity to reach over and select some inspiration from the stack of books on my nightstand… Nouwen, Stanley, Moore, and Jakes…No sale. Instead I referenced this prayer from the modern-day theologian, Tina Fey. Suddenly, I forgot about the insomnia, the loose-change mayhem, and the poo poo pot of coffee. For in that brief moment, I took great comfort in the reminder that love, and a good laugh, cover over a multitude of evils. In all fairness, if you are the sort of person that becomes easily offended at the use of colorful language and raw candidness, I suggest you forego clicking on the aforementioned prayer, however, if you are the type of person that is put off by poetic profanity and self-deprecating humor, I wonder how we are friends and why you are still reading this blog. Still, I can respect those who are sarcasm-free even though my mind is a constant narrative of, “Oh, The Thinks You Can’t Tweet.”

Happy “Chong”-Day, Everyone!

Holland

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Image via ::Elena::

A little perspective this Monday afternoon…

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Mind Over Mizunos

Mile 1:  Getting reacquainted

…favorite tunes are pumping, body is falling into stride, feeling good in my skin again as complete thoughts begin to flow. No little voices begging for a juice re-fill? No stopping mid-stride to change a diaper? No spelling the big words? Nope, it’s just me and more me, a rhythmic indulgence of unedited thought… a chance to blow the dust off my adult intellect which, let’s face it, wouldn’t stretch past the first mile anyway, but for now, life is good, I’m a rock star, and brilliance is mine if I can just keep putting one Mizuno in front of the other.

Mile 2: Negotiations
My legs start moaning, “not again” and proceed to rain on my mile 1 parade. My muscles make their best attempt to strike a deal with my mind to stop this madness because everyone knowns that running is pointless unless someone is chasing you and no one will really know if you walked instead because you’re still sporting the iPod arm band that makes you look like a legitimate runner even though you are a complete poser. I hate Mile 2. Mile 2 is the Antichrist.
Mile 3: Confession
My muscles forfeit the battle of wits and turn their dirty work over to an emoti-gland for which medical science has yet to come up with a proper name. Suddenly, I am flooded with the awareness of every horrible thing I have said and done or wanted to do since the last time I rounded the Terrorist Mile 2. The open sky becomes my confession booth and I begin my merciful plead for forgiveness in hopes that once this run is over, I may resume some sense of decency, dignity, and compassion for humanity…if only the humanity dwelling under my same roof .
During yesterday’s open-air confession, I began to rehearse the flood of responses to my last post about Salem’s recent diagnosis. Each one took my breath away. I felt as though you all wrapped your arms around me in some great big cyber-group hug and for the first time in weeks it seemed like everything was really going to be ok even if it wasn’t. You used words like, “courageous”, “brave”, and “strong”. One girlfriend send me a text saying she was proud of me and I had to ask her why on Earth everyone keeps saying that, for the spirit in which I wrote that felt more like an admission of guilt than a fearless war cry. The truth is, I am completely terrified of this Mystery Intruder who recently marched into our family’s life uninvited and unloaded all of its unpredictable baggage. No amount of sleepless nights or online research or Mile 3 Confession Sessions relieve me of thoughts like, “perhaps I should have taken prenatal vitamins,” or “maybe I ate too many tuna fish sandwiches or Malamar cookies when I was pregnant.” “This is because I stood in front of a bass amp that one time I was singing”, or “I knew I shouldn’t have exposed him to all those noisy basement rehearsals when he was an infant”. Too much TV, not enough vegetables. Too much room time, not enough socialization. To borrow a lyric from my favorite British pop-psychologist, it is “guilt on guilt” on “play” repeating–a broken record loop of torture which brings me to….
Mile 4: Talking to Myself
Comprehension has never really been my strong suit. Most of the time I only pretend to know what everyone is talking about when really I don’t have a fat clue, and I have to ask Clark about it after everyone else has gone home. So when I receive the news that my son has ASD, I nod like I know what that means. The therapist could have told me he had Autism or Asthma and it wouldn’t have made a difference in my mind because the truth is, I don’t understand what we are getting into whether we are ready or or not or want to or not. So, yesterday I concluded my mileage by talking to myself in a sort of mock-convo– proof that I too need therapy of a different kind. But perhaps if I can wrap my head around what this is exactly I might be able to explain it to friends and family who are just as foreign to the world of Autism as I am.
Tune in next time to eavesdrop on that admittedly dysfunctional yet surprisingly helpful chit chat with Yours Truly.

It’s My Story To Tell: Living with an Autism Spectrum Disorder

Clark and I were asked to sing in a wedding last weekend. It was hotter outside than I can ever remember. So hot, in fact, that a bridesmaid passed out right before the pastor said,”I now pronounce you husband and wife”. It was all very exciting, perhaps not for the bride or for the faint-ee, but it did get me out of singing a Band Perry tune that I had only heard for the first time earlier that afternoon. No offense to Kimberly Perry, but a “firefly catcher all dressed up in a tux and a bow tie” takes a backseat to locked knees and heat stroke. After all of the commotion had settled, we joined up with some old friends sitting at one of the reception tables. One of them told me that she missed reading my blog which I must admit, felt pretty good. To all of you that have commented toward that end, please know that I have missed you too. So, my bridesmaid-fainting-witness friend then proceeds to tell me how my posts, particularly the mommy stories, have reassured her that not everyone has it all together. To which I replied, “Thanks?” No really, I had to laugh because somewhere along the line, the bitter truth of maternal humanity became the lens through which I wrote of my journey here whether I meant for it to come out that way or not. Let she who stands take heed lest she faint in the blistering heat of marriage and motherhood.

And faint I have.

I explained to my friend that I never intended to permanently close up cyber shop but that I’ve been simply going thru something personal to which I can’t yet find the words to explain. And I still can’t, but at the urging of my mother who feels I could benefit from the support of an extended community, namely yourself, this is my story to tell. Perhaps its true that if I don’t capture the humor and the humanity in the hand we’ve been dealt, I may miss a golden opportunity to encourage other women who reach for both a post and a paper sack when the realization hits them between the eyes that they too don’t have it all together. Breathe. Breathe. Here goes….

It started about 3 months ago. I began spending time with a new friend who’s children are around the same age as my own. During one of our visits, she asked me if I ever considered taking Salem to see a speech therapist. She may as well have asked me if I ever considered flying to the moon. Um, no. She obviously hadn’t heard him recite the entire James Earl Jones narrative of Disney’s Earth or Bono’s ONE campaign speech from the 2005 Vertigo Tour: Live from Chicago. So, I was quick to dismiss the question. Why would he need speech therapy? Sure he mixes up a pronoun here and there, but I can interpret his needs perfectly well, thank you. Then she asked me if I ever noticed that he drums on everything upon which I began to ask myself where on Earth this line of questioning was going. Of course I’ve noticed he drums on everything. Clearly, she doesn’t know that we’re raising another little Boone Daughdrill here. I felt myself starting to grow anxious and defensive, and the minute she left I burst into tears and called Clark to hear him tell me that everything was ok and my son was just fine and there’s no need to be worried about his development or his speech or his rhythmic (albeit noisy) habits. Like a good husband should, he eased my motherly nerves and told me to bring up her concerns at Salem’s upcoming well-child appointment.

I am eternally indebted to my observant new friend.

A few weeks later, I was in the pediatrician’s office filling out a developmental questionnaire for Salem. As I began checking off the “Almost Never” box for most of the communication and fine motor skill questions, I got the same nagging feeling in the pit of my stomach that I felt when my new friend brought up her concerns about Salem’s development… like the pediatrician might have something to say other than Salem is a prime candidate for early admission to Juliard. That’s when I started getting nervous. She did recommend that we take him to a speech and occupational therapist for further evaluations. In the same breath she says, “Now, I don’t want you to panic because most parents panic and start thinking their kid has Autism”.

I wasn’t panicking, but I am now. Thanks, Doc.

And what does panic look like in this case? It looks like two months and two thousand dollars spent in a child development center in a whirlpool of consultations, testing, and discussions of possible diagnoses all of which sounded completely awful. Several times we would be sitting in the waiting room next to the little boy wearing a helmet or the pre-adolescent image to Cousin It who bobbed her way off the elevator bleating like a billy goat, and I could have sworn I was scarring my pre-schooler for life just for taking him there because OBVIOUSLY we do not belong. My kid can kick a ball and eat with a fork and count to 20 in English AND in Spanish, and I would be happy to prove it if it means we don’t ever have to come back to this terrible place.

And then one day I heard Salem playing in his room flapping his hands and counting to 20 forward and backward in English and in Spanish over and over and over again…”one…two…three…dieceseis… Diece-“ssippi”… Dieceocho…diecenueve…BEEF-TY!” I interrupted him with a simple question.

Mommy: “What is your name?”

Salem: “Como te llamas”.

Mommy: “No sweetheart. What is your name?”

Salem: “What is your name?”

Mommy: “How old are you?”

Salem: “How old are you?”

After realizing that he couldn’t answer my questions, it occurred to me that Salem and I have never had a conversation. The day before, a little boy ran up to us on the playground and said, “Hi! My name is Jacob and I’m three years old and my sister’s name is Ansley and she is having a birthday party, and”… On and on and on… And Salem is over by the swings, flapping his hands, and reciting the Judeo-Christian plan of eternal salvation utterly disinterested in anything this child had to say.

No sooner did the pieces all start coming together then we concluded all of our tortuous visits to the child development center. And as it turned out, we did belong there.

Salem has been diagnosed with Autism Spectrum Disorder (ASD).

Hence the two-month cyber-blackout, the unreturned voicemails, the elusiveness, and the vague response around the wedding reception table. And if I didn’t have 7% power remaining on this IPad, I would tell you how we are really doing. Perhaps those words will come eventually.

And so it seems now we have a new story to tell.