Archive for May 2014

Who’s Fuc#@r: How My 10-Year-Old Daughter’s Profanity Saved the Day   7 comments

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Why yes, that word in the upper left corner does say what you think it does. Why would a father share such a thing? Duh, because I’m proud!  Read on and find out why.

 

A common misconception about people with autism is they lack empathy for others.  It’s a myth that’s largely been debunked over the past several years but such progress was in no part thanks to my daughter Skylar, who spent the first 10 years and 4 months of her life bringing this stereotype to an entirely different level.  Skylar, you see, not only didn’t empathize with the misfortune of others–she reveled in them.

Crying, yelling, or misbehavior by another child, for whatever reason, has always caused my older daughter to laugh hysterically.  I never believed this awful trait to be anything but a non-malicious aspect of her autism but, nonetheless, try explaining that to the injured child she’s laughing at in the heat of the moment…or their irate, panicking parent…or her heartbroken little sister Alyssa.

I’ve long believed the only thing an autism parent can do in such situations is to (often uselessly—but it’s for show) admonish their child while apologizing profusely to all who will listen.  Generally, such apologizes were accepted and life went on…until Skylar did it again.  People who knew her accepted her twisted laughter at the worst possible times as part of her one-of-a-kind package and even grew to find it darkly humorous.  I appreciated their appreciation of Skylar but such moments tore me apart because they served as proof my little girl was never going to connect with the human race: How could she with no sense of empathy?  The one saving grace was that the twisted laughing was infrequent because Skylar ran with a crowd whereby she was usually the one having difficulty (not nearly as comical to her).  It all changed this school year.

As previously chronicled in this space, we made the decision to tap out on full inclusion for fourth grade and placed Skylar in a sub-separate room with other kids on the autism spectrum for the vast majority of her day.  Since it wasn’t exactly a leap to assume the kids in said classroom were likely to frequently display the crying, yelling, and misbehavior Skylar so enjoyed, I feared we were taking a problematic-but-infrequent behavior and making it a staple of her existence.  For the first few months of the school year, my fears were warranted.  Skylar came home beaming with stories of how this kid or that kid in class did this wrong or cried about that.   I knew a day of laughter at the expense of others had just transpired.  Her connectivity was growing weaker and her sense of empathy for others not at all.  I felt more hopeless than ever about her ability to fully join this world.

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This sweet face is now consistent with a little girl who is sweet to others in need

A few months ago, I suddenly noticed that Skylar was no longer as bemused by her classmates’ struggles.  When I asked her about school, she would say very little, and, when I’d ask about this kid or that kid, she’d become silent instead of giggling uncontrollably.  What was going on!?  When I asked her teacher about this drastic tone change, I found out Skylar had some concerns about a classmate possibly ending up in jail someday because of their bad behavior and was trying to help them.  She also now grew demonstrably upset in class when they or anyone else was upset or struggling.  Wait…what!?  Skylar cared about the kids in her class?

Skylar also began to react to Alyssa’s occasional outbursts in a radically different fashion.  Moments of legitimate hurt on Alyssa’s part were met with Skylar singing the song “Safe and Sound” to soothe her and crying or protesting in unison, which was great to see.  Of course, drama queen moments on Alyssa’s part were met the same way, which wasn’t so great but at least gave my younger daughter some perspective as to how silly she looked in such moments.  EmoSkylar, as we dubbed her, had arrived.

Skylar has always fancied herself a clinician so when I learned she’d made a behavior chart for the classmate she’d taken under her wing in an effort to cut down on their use of “unexpectible words”, I wasn’t surprised.  What did surprise me was when I found one of the charts she’d made at home one day posing the question, “Who’s Fuc#@R”, words her classmate had presumably uttered. EmoSkylar was working blue and I was concerned.  Sure, her heart was in the right place but it was difficult to regard a 10-year-old writing F-bombs in her spare time as a positive.  Exactly what direction was this newfound sense of empathy for others taking her?

That evening, our family went out to dinner.  Alyssa had asked for a few ridiculous things while we awaited our food and pouted when they were denied (causing EmoSkylar to come to her defense, naturally).  When my wife Jen and I both played on our phones a few minutes later, Alyssa decided to dig through her Mom’s purse…causing Skylar’s eyes to grow wide.  In one quick motion, the big sister who is usually more of a little sister did a very big sisterly thing: She reached over and removed a lighter from Alyssa’s hands before any trouble or injury could occur.  By the time I caught on to what had happened, the potentially flammable situation had been vanquished—by Skylar! Forget just empathy–Skylar was now responsible!

EmoSkylar continues to flourish as the school year draws to a close.  She’s not only dispelling any myths of people with autism not having empathy, she may also be contributing to a new one whereby people on the spectrum are regarded as too wrapped up in the feelings of others to sometimes function.

Admittedly, EmoSkylar can be annoying at times but such melodrama beats the hell out of her laughing at kids who are crying.  Who’s F%$#@R?  I don’t give a S#%, to be honest, because, in the year 2014, my Skylar is putting out fires—figuratively and almost literally—and helping others instead of laughing at them.  Not only can she connect—she can be a vital link.

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Skylar is a little girl with multiple identities, “Snow” being the most recent. But “Snow” has taken well to suggestions to keep swears off her behavior charts, as evidenced by this simple recess plan she has for the kids in her class.

Diamond Is the Sky is a non-profit organization providing affordable social opportunities and resources to people with special needs and their families, educators, and communities in the state of Massachusetts. To learn more, please visit http://www.facebook.com/diamondisthesky and, coming soon, http://www.diamondisthesky.org

 

 

 

Posted May 27, 2014 by seandal in Uncategorized

True Warrior Moms   1 comment

Nana and Girls

There’s a phenomenon that began in the autism community several years back whereby parents of kids with autism began to refer to themselves as “Warriors.” Indeed, “Warrior Moms” and “Warrior Dads” became both a very common term on social media and cottage industry for the sale of various products.  For me, personally, I never believed having a daughter with autism made me a “Warrior Dad” so much as a “Dad” but, hey, that’s just me and if somebody feels better about themselves because he or she fancy his or herself a “Warrior”, rock on, Warrior.  But with Mother’s Day upon us, I would like to write about two Moms who I believe to actually be Warriors.

The first Warrior I know very well because she gave birth to me.  My Mom had a childhood filled with horrors kid should have to endure, the type that often create adult monsters according to statistics. My Mom didn’t become a statistic, though. She instead built a life on saving kids from monsters—be it as a foster mother, adoptive parent, or social worker for both DSS (now DCF) and then MCB.  Her selflessness and pathological need to take care of everyone else unfortunately created a situation whereby she never really took care of herself and poor habits ensued. This is why, in 2003 when my daughter Skylar was born and she quit her two-pack-a-day menthol cigarette habit, I was ecstatic.

The ecstasy didn’t last.

As so often happens when a person gives up one addiction, others take hold. For my Mom, this meant surrounding herself with stuff, particularly food.  Lots and lots of food.  I hoped it was a temporary replacement behavior for the smoking but it wasn’t and, unless an apocalypse hit, she was stockpiling her life away. I was temporarily encouraged when she hired somebody to help her remedy the situation a couple of years ago but when that person left, so did her desire to dig her way out.

About three months ago, I left my Mom’s house and broke down during the car ride home. People have long criticized me both directly and indirectly for not “fixing” her issues and I’ve largely taken it in stride, as she’s a human being with free-will who has outlived many people who died in perfect health, not a project to fix.  Odd compulsion or not, my Mom seemed generally content to me so who was I to violate her home or give intervention-like ultimatums that would break not only her heart but my own and those of my kids when the terms weren’t met?  It wasn’t that I never offered help or said what I thought needed to be said but, at the end of the day, it wasn’t my life to live, it was hers and I was okay with that even if others weren’t.  That visit changed my perception.  For the first time, the weight of my lack of forcefulness hit me hard.  My Mom was in desperate pain and life for her struck me as too much to bear for the first time.  She rejected my attempts to provide more help and even informed she’d stopped using the young woman who’d been cleaning and organizing her house.  She also said without saying she’d never be leaving her house again and had the dead car in her driveway to prove it.  It seemed obvious she’d given up and I was felt as though I was to blame.

I try to call my Mom almost every day but I had to stop. Talking to her was just too depressing, as every time I did so, I now wondered if this would be the last time I’d ever speak to her during the entire conversation.  Of course, such a thought eventually stirred a more productive one—why would I let an opportunity go by when it could be the last one— and, thus, I sucked it up and began her calling again.  One subject that often came up was the fact my wife Jen and I are in the process of starting a non-profit organization called Diamond Is the Sky.  As we discussed Diamond more and more, I could hear my Mom’s enthusiasm growing.  Her input was invaluable and, when I’d get discouraged or overwhelmed, she’d point out that the skills needed to run such an organization were ones I’d been developing my entire life. When I’d vent about petty annoyances, she’d hear me out before getting me back on a positive track.  Due in a big part to her, one of my dreams is becoming more and more of a reality.  It’s plainly obvious that, even at the age of 42, I still need my Mom.

I think she realizes this. I’m proud to say my mother has made an amazing comeback over the past two months. She has welcomed the young woman who’d been helping her out back into her home and her house now teeters on clean.  She also started and has remained on a diet to improve her mobility and health. She even plans to come to our Launch Party in a month, meaning I guess she’ll be leaving the house again after all.   No matter what becomes of Diamond Is the Sky, if this adventure in any way played a part in my Mom, yet again, getting off the canvas to kickass in life, it’s a success in my estimation.
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I haven’t known Liz as long as my Mom.  Actually, I’ve only known her and her husband Matt for about six months.  Matt joined the Board of Directors for Diamond Is the Sky in January and has been an amazingly productive, passionate contributor with great ideas.  I knew Matt would do well but what I didn’t realize was that while all of his spectacular voluntary efforts on Diamond’s behalf (on top of his full-time job, raising twin daughters (one with autism) in kindergarten, and moving to a new house) were also taking place with his wife being sick. 

My first recollection of Liz was hearing about how she’d run a long distance race for the first time in her life after having endured 15 knee surgeries. I marveled at her toughness in handling such adversity but her running exploits don’t even scratch the surface of her grit.  Liz was also having major health issues and, a few months ago, was diagnosed with stage 3 ovarian cancer.  Even though I didn’t know her well, it hit me hard, as I, too, have young daughters (one with autism) and about the only things I fear in this world are something happening to them or something happening to me whereby I can’t be there for them. 

I’ve gotten to know Matt and Liz better these past few months and now consider them to be good friends.  I’m absolutely blown away by the way they’ve maintained normalcy for their little girls and the positive way in which they’ve carried themselves.  Like my Mom, Liz clearly puts others first and her amazing kids are evidence of this.

Today, Liz began chemotherapy.  I’m fortunate enough to say I’ve never had cancer and I can’t imagine what she is about to endure emotionally and physically. This morning, while walking Skylar to school (a task I’ve spent the better part of the past 5 months ridiculously bitching and moaning about because the temp wasn’t to my liking), I passed Matt and Liz.  My heart immediately froze, as I knew her next stop was chemo and, yet, there she was, bringing her beautiful daughters to school just like it was any other day—for their sakes.  When I got into my car, I broke down again but it was out of awe, not despair.  I have no doubt Liz is about to kick the living shit out of cancer because people that strong ALWAYS win in the end. I learned this firsthand from my being around my Mom.

           

Liz and Daughters
Our website www.diamondisthesky.org is currently under construction but should be operating in the near future. For the time being, to learn more about our organization, please visit www.facebook.com/diamondisthesky.  Of far greater importance currently, if you are interested in doing something relatively inexpensive and simple to help Liz, Matt, and their girls, please email me at diamondisthesky@outlook.com and I’ll give you the link and code to a website where you can sign up to provide a meal (homemade or takeout) for the family during their time of need.

Posted May 8, 2014 by seandal in Uncategorized

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