Corporate America, I Know Not What You Say

Have I mentioned that working for the man sucks? I have? Oh, good. It saves me from having to repeat myself.

In case you thought my entire world revolved around autism, gentle reader, let me enlighten you. Only half of it does. The other half revolves around staying employed. No, it’s not my dream job. And no, I’m not personally fulfilled and my job doesn’t feed my soul. But it does feed my family, so I keep showing up.

But I hate-no, DESPISE, corporate BS.

This week, we received emails from the VP of something-or-other, requesting (passive-aggressively demanding) that we log in and complete our “career profile” by adding “core competencies.”

Why can’t I just “select all”?

All those words just sound like “wanh, wanh-wanh, wanh wanh” to me. But whatev, I logged in to get the nuisance done and out of the way. Following is part of the actual list of core competencies for us to choose from. There was no option to respond or ask questions, so I’ve decided to put my responses right here, for the benefit of all of Corporate America. I’m a giver.

Humor – well DUH. Humor is my vodka and heroine. My shield and sword. Humor is the only thing that keeps me from jamming a letter opener into a major artery.

Informing – I’m informing you right now that doing this is a big fat waste of time.

Innovation Management – What the fuck does this even mean?

Integrity and Trust – There’s a dude down the hall with a very long, greasy ponytail. I’m pretty sure he might have body parts in his freezer. Trust me on that.

Intellectual Horsepower – I feel like this is discriminatory toward other animals. Lions are powerful. So are gorillas. Maybe I have intellectual gorillapower.

Gorillapower, it’s the new horsepower.

Interpersonal savvy – See prior statement about greasy co-worker.

Learning on the Fly – I’m an autism parent, motherfuckers. I could teach a class on learning on the fly.

Courage – See above statement.

Motivating Others – Hells yes! I’ve got sticker charts and social stories for whatever ails you. You like Transformer stickers?

Negotiating – Have you ever negotiated a child with Asperger’s and ADHD through 42 aisles of a Super Target? No? Then trust me when I say I could negotiate Kim Kardashian right out of her Manolo Blahniks.

Organizational Agility – Again, I don’t think I understand. Should I be doing some stretches to increase my agility?

This must be what they mean by organizational agility.

Dealing with Paradox – My child cannot get his pajamas from his bedroom and put himself in the shower without multiple reminders, yet he can sit and play Skylanders for two hours and tell you every detail of each character. My life is a paradox.

Patience – That’s what drinking is for. We need to institute “Flask Fridays” so that everyone’s patience increases.

Peer Relationships – I admit it, this may be my Achilles heel. Surely the corporate goons must be aware that people pretty much suck, right?

Perseverance – This one time, I was watching Supernanny, and I got motivated to use the time out technique for my then-three-year-old. I spent over two hours repeatedly putting him back in the time-out spot, until my back went out and I had to lie down with my feet elevated. On the upside, I got some muscle relaxers from the doctor.

Personal Disclosure – Fine. Okay. Last week, when I was shaving my big toe, I nicked it right in the bend-y part, the joint. It wasn’t until I was walking into work, in my sandals, that I realized it was still bleeding. That’s all I’m going to disclose at this time.

Not my actual feet. I swear.

Ironically, there were many more categories than this, many of which related to how we relate to co-workers. A corporation that spends that much time dehumanizing us with their corporate, mumbo-jumbo word trickery, and they want to know how we relate to others? What I’d like to know, Joe Q. Corporation, is how do YOU relate to YOUR workers?

Such is life in corporate America, where we measure our performance in terms of “horsepower” and “courage”. But if you’re listening, CEOs, I want you to know that, much like special needs parenting, a more personal and individualized approach would go much, much further in building a happy and productive workforce. You can file that under “innovation management.”

The Snugg iPad Cover (and chicken art!)

When the nice people at The Snugg contacted me to do a product review, I said yes right away. I haven’t been really thrilled with our iPad cover, it’s really bulky and inconvenient to hold.

They sent me a red (my favorite color!) leather iPad case to try out. And I have to say, I really love it! It arrived last week and as soon as I took it out of the package, I could tell it was really nice quality. The leather is soft, but durable.

I braced myself for the 5,000 questions that Connor was going to throw at me. Whenever anything changes, there always has to be copious questions and explanations. So he asked why there was a different cover, and I told him it was a nicer cover and even has a “kickstand.”

He hogged the iPad the entire weekend. I’m not even kidding.

I did get to use it Thursday night. I was lying my lazy butt on the couch, and decided to draw a chicken (as you do). Instead of having to get up and sit at the table, I just used the flip stand so the iPad stayed upright while I created my masterpiece.

And I’ve NEVER drawn a better chicken.  Seriously.

My best chicken ever!

The iPad cover even has a handy little loop for holding a stylus, and a hand strap on the inside cover which is soooooo convenient. The covers are reasonably priced from $29.99 up to about $34.99, and come in several different color choices. An extra added benefit is that the cover comes with a lifetime guaranty! You just don’t find that very often.

They have many other accessories on their site, so be sure to check them out.

As for device protection, I feel like the case adequately protects the iPad if it were dropped, although I did not drop my iPad to test this theory. For those of you that have children who are inclined to THROW the iPad, then you may want to opt for a cover that offers more extreme protection as this is geared toward average, everyday usage.

The Snugg also offers cases for smart phones, tablets and Kindles!

Disclosure: The Snugg provided me with a free iPad case in exchange for a product review.

If They Only Knew What I Was Thinking

As parents to children with special needs, we’re graced with many, many opportunities to kindly and compassionately educate others about our children. We endeavor to dispel myths, preach inclusion, and promote equality and acceptance.  It’s not always easy to be so kind, especially when we read extremely ugly comments to posts online, or hear others speaking crassly about autism or other special needs.

Sometimes we just want to let the snark fly.

So I did. Here. Following are some of the things I only wish I could say sometimes. I’ve chosen to write responses to some of the most common questions we hear or read. Just to be clear, these are things I think in my head, not things I actually say. (I feel like I have to make that abundantly clear, so no one gets their panties in a bunch.)

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“Why should our kids have to go to school with all these ‘challenged’ kids?  Why shouldn’t kids with special needs go to their own school?”

It’s important that your children are prepared for the real world by being exposed to different kinds of people.  When they are adults, no one will be there to shelter them from all the “different” people they will come in contact with, and we don’t want it to be a shock to their system when that happens.

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“Why should our tax dollars be used to support kids with special needs?  They use up money that schools could be using for materials, teacher salaries, and extracurriculars.”

Everyone knows that teachers are in it for the love of teaching*, not the money.  It would almost be insulting to offer them MORE money, just for doing what they love.  Besides, most of those special needs kids get denied for services they really need, so we’re not spending THAT much extra on them.  I’ve also got enough cookie dough in my freezer from the PTA fundraiser to fund a sports team for an entire season.

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“What if our children pick up bad habits from the special needs kids, who have unusual or severe behavior problems?”

Many behaviors occur because of teasing, bullying, or not being included by their peers.  Your children should be safe as long as they continue to ignore the special needs children, as though they’re not really there.  If one of them does have a behavior in front of your children, they should move as far away as possible and stare at the special needs child, whispering to their friends about him or her, and basking in the warm glow of satisfaction, knowing they aren’t as weird as that kid.  Because being a friend to a child with specials needs is just unimaginable, right?

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“These kids take up more of the teacher’s time in the classroom, so the rest of the kids suffer because they’re being held back.”

It’s true that children with special needs often need more one-on-one time, keeping the typical kids from mastering the content in record time, forging through the grade-level work by mid-year, and resulting in them not being the next Doogie Howser.  That’s the reason we don’t ever see 14-year-old doctors in clinics and hospitals, and it’s a damn dirty shame.  On the plus side, it saves parents from having to pick up their doctor-child at the end of their midnight shift.

Sorry folks, urban myth. Your little precious isn’t the child prodigy you think they are.

I don’t know about you, but that felt good. Now that I’ve let the snark poison out of my system, I can go back to kindly and patiently educating these stupid fuckers misinformed parents. I try to equate educating the masses with the formation of the Grand Canyon. Time and pressure. If time and pressure can carve out something so massive and breathtaking, then there’s hope for autism awareness and education.

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*Teachers TOTALLY deserve more money, they work hard.

I Just Want to Thank You

Thank you for taking the time to read the words I write, even though they are oftentimes rambling and tangential.

Thank you for wading through the endless abyss of the internet, and choosing to stop in my little disorderly corner of the ‘sphere.

Thanks for expressing genuine concern, happiness, and joy at the adventures of my most precious creation, Connor. To have virtual strangers that rejoice in his success and feel genuine sadness at his challenges…that is just beyond amazing to me.

Thank you for knowing when I’ve had too much, and offering words of kindness, compassion, and encouragement. It is often more than I get from friends in real life.

Thank you for laughing with me. When my tank is empty, laughter is the fuel that keeps me going.

Thank you for knowing that my words are sometimes inadequate in truly describing my thoughts and feelings.

Thank you for realizing that, like you, I too am only human. Imperfect. Unfinished.

Thank you for not pointing out that I use too many commas.

And ellipses…

Thank you for realizing that just because we live with autism, it doesn’t mean I’m an expert about autism. Who is, really?

Thank you for understanding that I can only write about my own family’s journey, and my own thoughts, and that I couldn’t possibly speak for everyone. To try and do so would be absurd.

Thank you for sharing your stories with me and letting me know that I’m not alone on this journey.

Thank you for knowing that if I don’t sometimes use humor and sarcasm to cope, then I just might break down into a million pieces.  Ain’t nobody got time fo dat.

Thank you, friend, for your recent post in which you make a bold declaration about where you stand. Don’t think I didn’t notice, and don’t think I don’t appreciate it. I know you must have struggled with whether you should publish it or not. It was courageous of you.

Thank you for understanding that I just can’t get around to comment on your posts every day, even though I would like to. It doesn’t mean I’m not reading them, or thinking about you.

Thank you for being a friend; traveled down the road and back again; your heart is true, you’re a pal and a confidant.

This moment of gratitude brought to you by Flannery, because we don’t take enough time to be thankful.

Focusing on Smudges and Missing the Big Picture

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Getting hung up on the details and missing the big picture* is a recurring theme at our house. From my understanding of Asperger’s, it is a fairly common occurrence to get lost in those details.

When Connor does his nightly reading, he often flips from the cover to an inside page, several times, to compare the cover photo to an inside photo. He’s fixated on seeing if the pictures are an exact match, or if there is some detail missing. He will flip through the book, counting the pages, instead of just reading. Sometimes he will count the number of letters in words. Twenty minutes of reading is sometimes an exercise in how much patience I can muster after a very long day.

And always I remind him, “you’re getting lost in the little, unimportant details. The big picture is in reading and understanding the story.”

Sometimes our conversations are the same way. He may dial in on a particular word I’ve used, and soon we’re off on a tangent that’s completely unrelated to the original topic.

It’s a slow, arduous process. But it’s a challenge that we continue to work on daily, because I know this will be the cause of much frustration and misunderstanding in his life if he doesn’t learn how to step back and see the larger picture. I worry that he will struggle as an adult if he can’t get past reading too much into little details, and completely missing the larger point.

With any luck, persistence, time, and maturity will work some magic. I would hate to see him miss out on seeing a beautiful masterpiece because he was too busy zeroing in on the individual smudges.

*Edit:  the clinical term is called central coherence (thanks Sharon!).

His Birthday, My Gift

Connor had his 8th birthday last week. He didn’t really know it, but there was so much more to celebrate than just being a year older.

Second grade is almost complete. He is reading on grade level. Although he still struggles with math, he has worked really hard at it this year (thanks to some IEP goals I fought hard for). So hard, in fact, that he participated in something the school calls “Math Marvels.”

Math Marvels is something the school does each week, where students can come to the cafeteria and test their math skills by doing so many problems within two minutes. There are different levels, from addition of numbers 1-9, and so on. Connor showed a lot of interest in testing, especially since passing means you earn a medal. He passed the first level of Math Marvels on his second try, and came home with his medal around his neck.  There are no accommodations for Math Marvels, because it’s not part of the regular curriculum. That’s what I was told by the teacher. So this was accomplished without any extra support.

Math Marvels AND a soccer medal, woo hoo!

This spring Connor played on a recreational soccer team. There were 10 weeks of practices and games. He enthusiastically looked forward to it each week. He participated and never complained when it was his turn on the bench. He scored one goal this season, and somehow that one goal was more special to me than if he’d scored a hundred.

The Titans were a mighty force to reckon with.

When the season ended, the coach had a special pizza party at Gattiland, the Texas version of Chuck E. Cheese. Each player got a medal. One mom and her son arrived a little late. Her son was arguing with her, whining, and she was exasperated. She warned him that they would leave. I could see she was at the end of her rope. I approached her and put my hand on her shoulder, and told her that Connor has Asperger’s and ADHD, and I’ve seen my share of meltdowns, and pulled him out of many places. I told her I knew how she felt, and it was okay.

Her eyes got big as she said, “I had NO idea.” She’d never suspected that he was any different. And although that shouldn’t be a source of comfort to me, it was. Yes, I feel some shame at that, but it’s true. To hear someone say that he just blended in, and they weren’t aware that he was any different, well that made me happy. I was happy for him, that he could have that experience without being branded as different, odd, or special. He was just Connor.

Yes, this birthday was special. So special that I dropped the ball on planning it, compared to past years. I didn’t call ahead and order a special cake, decorated with super heroes or movie characters. I didn’t go overboard with gifts. I didn’t even plan a party.

We got him the Skylanders game for the Xbox and a Spiderman web shooter. We, our little family, took him back to Gattiland for pizza and games. We came home and had the cake I picked up at the last minute at Wal-Mart, where I hastily had them add his name (and a shoddy job they did).

And he was happy with all of it. Not one complaint.

In fact, he insisted on cutting the cake, and said he’d cut it into equal parts of four, since there was four of us (don’t worry, I talked him into smaller pieces).

Only 8,000 calories per slice.

And at school, they have cupcakes and make a birthday book. Each child writes something on a page to wish him a happy birthday. Most of the pages were pretty ordinary, like this:

But there were a couple that didn’t disappoint in the humor department. Like this, from a girl that knows what she likes:

It’s all about the Crocs.

And this kid, who’s all about the cake (a boy after my own heart):

Well are there cupcakes? Oh, and happy birthday. But are there cupcakes?

This past year was truly a gift. It may have been his birthday, but it was really a gift for me. Thank you, Connor, for the amazing gift of being your mother. You humble me. You bring me to my knees with your spirit and humor. You remind me to never stop believing in your ability. You’ve made me stronger and fiercer, while shattering my heart into a million pieces. It’s the most fulfilling, rewarding, and frightening experience I’ve ever had.

I couldn’t have asked for a better gift, even though it was his birthday.

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Have You Been Carly’d Recently?

Carly Fleischmann is an amazing young autistic woman who has gained notoriety for achieving a “breakthrough” in her “severe autism”, learning how to communicate by typing on a computer.

Most of us have already heard of Carly. We make it our business to keep up with autism news stories. And make no mistake, Carly IS amazing. It’s just that…she’s also possibly an anomaly.

When people see Carly’s story on 20/20, they are inspired. They’re inspired because people don’t expect someone with severe autism to be cognitively equal to non-autistic peers. It’s the truth. When we see someone that can’t communicate, can’t control their body movements, and their behavior is challenging, we just can’t imagine that their thoughts and feelings could mirror our own.

The challenge with someone like Carly is two-fold. First, it brings our bias and prejudice about autism into stark outline – we don’t believe that autistics are equal to non-autistic people. When we are shown a legitimate example of someone learning and overcoming their challenges so their voice is heard, we are amazed and awed by this wondrous achievement. It’s as though we didn’t believe the possibility existed that she was a whole person with her own thoughts.

On the flip-side we have another problem, and that is with people generalizing Carly’s achievements to anyone and everyone they know who is autistic. Just about everyone I know has been “Carly’d” at some point, which means that some friend or family member was compelled to share Carly’s story with them, because “maybe it will work for your child too”. (I did not make up this term.)

Carly has become our very own Lady of Lourdes. I fully expect to see her image on a piece of toast, or embedded in someone’s granite counter top.

While everyone has their own unique potential, not everyone will have the breakthrough that Carly did. The big truth about autism that no one wants to talk about is that sometimes people do have autism AND cognitive delays. Sometimes those delays are significant, and a person can grow into adulthood and still have the cognitive ability of a child. So while Carly achieved success using assistive technology, others may not.

In short, we are supposed to presume competence and equality, while not necessarily expecting miraculous outcomes.

And THIS is a major stumbling block in the autism world, and especially between advocates and parents. Those that are active autism advocates will undoubtedly have a cognitive level that is at least close to “average”, while many parents are advocating for children that are significantly below the average, and unable to advocate or comprehend advocacy efforts.

According to an article on science20.com, about 40% of children with autism also have an intellectual disability. That translates to roughly 4 out of 10 people with autism have some degree of cognitive impairment. Now compare that to a study by Left Brain Right Brain, that shows an incidence of intellectual disability in the general population to be about 1%. Based on these studies, it is clear that there is a higher likelihood and prevalence of intellectual disability among autistics.

Carly is a role model. And while she does serve as a wonderful example to many, she also serves as an impossible standard to at least 4 out of 10 autistics.

And for me, that begs the question, how does the autism community effectively represent and advocate for people that may never achieve a degree of independence? Are the goals of advocacy in alignment with the needs of the entire community?