Give us an “F”: April, Autism, Awareness, Acceptance, Action, Advocacy and Antagonists

I had big plans for April, which is autism awareness month. I had this idea that I would make it my autism “action” month – 30 days of doing things to improve the lives of people on the spectrum and those who care for, support and educate them.

I started with this:

(Image in video is via Jill at Yeah.  Good Times., who awesomely coordinated this event (and it is now an annual memorial).  Music is Adagio performed by Kronos Quartet.  You can listen to the album here:   You can buy it here.)

There are too many names in this slideshow.  Too many.  And it is hard to imagine how anyone – anyone – could say anything to disparage a memorial event the purpose of which is to remember the lives of autistic children lost after wandering.  But, this is the Internet, yo.  It is the virtual playground of trolls, the cyber-land of nutters, the fiber-optic assembly of asshats.  THEY WILL FIND A WAY!  Commenters criticized the wording of the memorial avatar.  They criticized the organizers of the event for not being autistic (or autistic “enough”).  They criticized the parents of deceased children for their children’s deaths.  It was unreal.  It was unfair.  It was unfeeling, unbecoming, uncalled for.

Since April 1, my FB and Twitter feeds provide a steady diet of criticism coming from every end of the spectrum (and I mean this both literally and figuratively).  It is now the fourth day of April, and I have had it. I feel like I’ve gone ten rounds, and I haven’t gotten out my first blog post.

Right now, I’d give the autism community a big, fat, felt-tipped red pen “F.”

F

The “autism community” – as it is often called – is anything but a community.

CommunityIt seems reasonable – at least superficially so – that if you are autistic or you care for someone who is autistic, you’d have something in common – knowledge about autism.  Sure, your perspectives and depth of knowledge will vary, but it doesn’t seem beyond the pale to infer alignment toward a single goal:  improving quality of life for autistic persons along every point on the spectrum.  Of course, you couldn’t be more wrong if your ass was your elbow.  Stick your foot in the autism pool to test the water, and you will learn nearly immediately the myriad ways you are different than anyone who does not share your point of view:  you are not autistic, you are a parent, you are not a parent, you are privileged, you are high functioning, you use the wrong words, you are a person first, you are autistic first, you lack empathy, you cannot understand, you  … I could keep going.  The point is – well – somewhat ironic.  We don’t use the “diversity” of our “community” as a springboard for acceptance.  Au contraire.  The point (pun intended) is used as a sword to attack a speaker on a personal level as a means of invalidating the original author or commenter’s opinion/point of view/experience (and, for that matter, her very existence) because s/he lacks the “right” characteristics to have an opinion/point of view/experience.

Who needs this kind of “community”?  How is this helping my daughter?  Seriously, I want to know.  Because, right now, the only awareness I want to spread is the kind that keeps her away from this type of mean-spirited, destructive in-fighting.

There is no end to the litany of ways you will become “aware” that – as a parent or caregiver for an autistic person – you’re doing it wrong:

1.  If you vaccinated your child, live too close to an electromagnetic field, gained too much weight during pregnancy, drank diet cola, ate soft cheese or raw fish, waited until you were older than 36 to have a child, colored your hair, rode in an airplane, talked on your cell phone too much, passed gas on a day ending in “y” or breathed anything other than pure oxygen during pregnancy, someone will tell you that YOU made your child autistic.  And, really, what could make me feel better and be more effective at this parenting gig  than “accepting” or being “aware” that autism is ALL MY FAULT?

2.  Of course, while you are busy beating yourself up and tearing your heart apart because you “made” your child autistic, a group of adult autistic persons will be right there to kick you while you’re down by telling you what a complete failure you are as a parent and human being for having even ONE negative feeling about your child’s autism or for thinking for EVEN ONE SECOND that it is something bad or that could or should change.  This applies whether you parent a child with mild echolalia or a compulsive tendency to smear feces on the carpet and bedroom walls.

3. Your pain won’t end there, though.  Is your child one of the 1:68 US children who are autistic?  You’re faking it!  Does your child participate in ABA therapy?  You’re a child abuser!  Do you have a child “with autism” instead of an “autistic child?”  You don’t respect your child!  Do you think parenting a child with special needs, educational challenges, sensory processing disorder, language processing disorder, obsessive compulsive tendencies (oh – I’m sorry – focused joy), sleep disturbances, social anxiety, motor skill limitations and food sensitivities is difficult?  You do not love your child!  Do you want to talk or think about a cure for autism?  You’re an enemy combatant!  Do you focus on autistic children – maybe because you’re in the midst of raising one?  You are robbing autistic adults of their “voice”!  Do you have even an ounce of understanding for how a parent raising an exceptionally challenging child might reach the end of her rope when she has NO HELP and no resources?  Murderer! Murderer sympathizer! Do you fight with your school district to get your child the free, appropriate public education to which s/he is legally entitled because you are legally obligated under compulsory education laws to send him/her to school?  You are taking limited resources away from kids who can “actually” use them!  Does your child sometimes (or often) experience anxiety / panic attacks or respond to sensory overload in public places by yelling, crying or lashing out?  You are a lazy parent who overindulges her child! Do you ever wish you could travel, dine in restaurants, see a movie, cook only one meal at dinner or do any other activity you used to do before accommodating your child’s needs became your paramount concern?  You are a privileged asshole!  Someone call Child Protective Services!  Do you support [fill in autism-focused organization here]? You are a moron!

I’d like to say that this list is tongue-in-cheek, but these are frighteningly accurate paraphrases of comments I’ve read in response to blog posts, news stories, articles, videos, etc.  And, as a consequence of all this, I am now “aware” that the biggest danger to my daughter really isn’t the broader public and it’s “ignorance” about autism.  It’s the damn Internet and the people who think a wi-fi connection and a keyboard entitle them to harshly criticize the heart-rending/difficult/painful AND the joyful/amazing/euphoric experiences of being autistic or loving/caring for an autistic person.  Have I gotten some sideways glances and unsolicited advice about my daughter from strangers when we are out in public?  Yes.  But, those incidents are few and far between, and they DO NOT outnumber the times when a stranger has offered an unsolicited POSITIVE remark.  No one has ever had the chutzpah to say to me face-to-face some of the awful, hurtful, mean and provoking things people write to me (and other parents) on the Internet.

So, this month, I won’t ask you to light anything up blue, to sport any puzzle pieces or post memes about being “au-some.” Really, when you think about it for just a moment, autism “acceptance” comes down to little more than just being “aware” of someone other than yourself, being a patient, decent, kind human being, and thinking before speaking.  If it makes you feel better/productive/more informed, go ahead and read about Carly, Temple, John or what was curious about the dog at night.  But, if you want to do something that will make a difference in my daughter’s life and the lives of everyone touched by autism (which is ALL OF US, btw), here’s a list of my suggestions to get your started:

1.  Listen or read before you respond.

2.  Think before you press “send,” “post” or “publish.”

3.  Remember that the words to which you respond were written by a human being – a living, breathing, warm-blooded mammal with feelings and experiences that you cannot invalidate simply because you don’t agree with them.

4.  Know that the Internet is big enough for us all.  If your “voice” isn’t loud enough, find a way to amplify it; don’t blame the guy out-shouting you.

5.  Be a change agent.  If all you do is complain about a problem, you are part of the problem.

6.  Set an example.  Just because you have a constitutional right to be an asshole online doesn’t mean you have to be an asshole.  It’s a tough concept, but rights come with responsibilities; actions usually come with consequences.

7.  Choose kindness.  Autistics often implore others around them to presume autistics are competent.  I implore everyone – on the spectrum and off – to presume competence.  There is no one particular state of being or experience that applies to all – neurotypical, neurodiverse, autistic (pick your label).  Sweeping generalizations and gross assumptions are never the right choice.

 

 

 

 

 

 

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Sometimes, the stars align and magic happens

The life of an autistic child is oftentimes about routines and schedules.  In Helene’s case, there is very little of her life that isn’t planned in advance – not because it suits us, but because it suits her.  She has a much easier time transitioning through the different happenings in her day when she knows what to expect.  “Spontaneous” is not part of our vernacular except as antecedent to “combustion.”

So, today, as I was getting ready to leave the house with Nate to get him a haircut, I found Helene sitting on the living room floor, putting on her shoes.

[Let me pause here to explain that shoes are highly symbolic for Helene.  When she does not want to go somewhere, she will fight the hardest right before her shoes go on.  Once the shoes are on, though, the bark dilutes to a dull whine, as though she is resigned to the fate of going wherever the shoes might take her.  When Helene gets home, the very first thing – the VERY. FIRST. THING. – she does is take off her shoes.  This is often accompanied by her throwing some serious shade in her parents’ direction, subliminally conveying the message that she WILL NOT be leaving the house again, thankyouverymuch].

Me:  “What are you doing?”

Aaaaaaaaaaaaand here’s the answer I did not anticipate.  I COULD NOT anticipate …

Helene:  “I go get haircut.”

Me:  “You want to come watch Nate get a haircut?”

Helene:  “I want haircut.”

Um.  Okay?  Okay.

*Fast forward 20 minutes*

Helene, the Hubs, Nate and I are sitting in the waiting area of the barber shop.  About 3-foot-six-inches of absolute cutie-patootie walks up to us and says, “Hi, Helene!”  Before I can really put together what’s going on, Helene says, “Hi, A!”  The two of them promptly sit down next to each other, and A starts jabbering up a storm.  Thankfully, Hubs and A’s mom get me up-to-speed:  A is one of Helene’s classmates at school (but he has early dismissal, so I’ve never seen him before.)

Now, this exchange would be remarkable enough. But, WAIT!  THERE’s MORE!

Helene had her iPad with her, as we anticipated the need for a distraction during the haircut.  (You know, the haircut we are not entirely yet convinced is actually going to happen.)

[Let me pause here to explain that Helene is a pretty decent sharer … except when it comes to her iPad.  You want to learn mad ninja skills?  Touch her iPad.  Go ahead.  I. DARE. YOU.]

A was definitely eyeballing the iPad, and I could feel myself tensing, bracing for the inevitable smack down coming A’s way, grateful that A’s mom would not judge the ensuing global-thermo-nuclear-wrath.  Then, A blew the lid off Pandora’s box:  “Helene, can I have a turn?”

[Pausing again. Also, foreshadowing. Also, also? Spoiler alert. Do you know what was left in Pandora’s box after? The very last thing left? Hope. Think on that for a minute.]

Before the synapses of my brain could carry the signal from whatever source of origin makes your vocal chords vibrate; before my mind could tell my muscles to move my mouth; before I could even blink … Helene handed A the iPad.  As if that wasn’t enough, she patiently sat next to A and watched him take a turn on the game she played.  And, as if THAT wasn’t enough, when A finished with it, he handed it back to Helene, said thank you, and Helene responded, “You’re welcome!”  Wash, rinse, repeat – for a good ten minutes.

AND, and, and, and, and, and … A decided he wanted to play a different game.  Helene was cool.  Totally cool.  Cucumber cool.

Oh, and did I mention there was a vacuum cleaner and a hair dryer going off and on THE WHOLE TIME?

This right here?  This would’ve been enough to convince me that Peter Pan can fly, reindeer are sometimes born with blinking noses, wishing wells really work, and it was totally worth burying a potato in the backyard.

But, WAIT.  THAT’S NOT ALL!

The stylist called A’s name for his turn in the barber chair.  He wasn’t too excited about it.  In fact, he was pretty articulate about how much he did not care for the big idea of getting a haircut.  Well, I thought, that should do it for Helene.

Then this happened:

Helene's first (real) haircut.  As opposed to my stealth efforts at trimming her ponytail while she was asleep or distracted ...

Helene’s first (real) haircut. As opposed to my stealth efforts at trimming her ponytail while she was asleep or distracted …

Helene got into the chair.  Helene let the stylist put the cape on her.  Helene let me undo her braid, and she let the stylist comb her dry hair.  She didn’t even complain when the stylist sprayed her hair with water.

It was amazing, surprising, thrilling.  But, here’s where spontaneous decisions typically end up with a very different ending …

The barber shop was very busy.  It’s the kind of shop that specializes in men’s and boy’s cuts.  The stylists are young, cute, and hustling to get through their respective workloads.  Yet, here comes my sensory-challenged daughter with hair down to her waist …

We hit the mother of all lotteries.

The stylist who drew Helene’s name was the sweetest, kindest, most patient, least judgmental, perfectly understanding woman EVER.  As Helene approached her chair, I quickly explained that Helene is autistic and has a lot of sensory sensitivities, this was her first real haircut, and if Helene couldn’t make it through, I didn’t want the stylist to push it or feel bad – this was more about the experience and less about the haircut, and while Helene seemed quite game, that could change suddenly through no one’s fault.  This exchange was a 15-second conversation.  Yet, somehow, this angel of a woman heard every word.  She combed gently.  She never asked Helene to hold or turn her head a certain way.  She let Helene stand when sitting wasn’t working for Helene anymore.  She verbally reassured Helene.  She worked herself into a pretzel on the floor to cut Helene’s hair into an amazingly straight line.  She swept with the broom instead of getting out the vacuum, because she didn’t want to scare Helene. (Also, aside to bossy manager stylist who wanted our stylist to use the vacuum: your karma looks a lot like paper cuts and lemon juice to me. Just sayin’.)   Our stylist was super patient, kind (without being patronizing or condescending) and – she finished Helene’s haircut!

Afterward, we went out for celebratory frozen yogurt.  As we sat at the table, Helene looked at us and said, “Oh, Helene Bear, you got your hair cut.  I am so proud of you!”

“Yes, little lady,” I said, “you should be proud of you.  You were very brave.”

All this for one easy payment of a dish of vanilla fro-yo topped with marshmallows, gummy bears, gum drops, mini M&Ms, chocolate rock candy and Nilla wafers.

Happy 2013. Yes, I mean 2013.

Ahhhhh.  My poor, neglected, sad little blog.  I did not have as a good a blogging year in 2013 as I did in 2012.  I attribute that mostly to how emotionally and physically hard much of 2013 was.  You’d think that all the experiences – leaving not just a job but a career, fighting for Helene’s therapies and education, battling my own inner demons – would give me great blog fodder.  But, I experienced another change during that time.  For once, writing about my experiences was not helpful.  The hyper focus required for writing only tilted my anxiety higher.  I tried to use my blog as a distraction, but that didn’t go well, because I felt like I’d lost my voice.  Instead, I fed random, witty little snippets to my FB page.  (This is a totally shameless plug for my FB page.)

Nonetheless, I started 2013 by resolving to remember why it was a great year.  You might recall the “Resolve to be Successful” jar?  No?  Well, lucky for you, I remember it.  Throughout the year, I wrote down on sticky notes the wonderful things that happened to me. I folded each note, put it in the jar and took comfort in the tangible reminder that things do not always suck, even when it feels like everything sucks.

Tonight, I open the jar.  To really make this work, I need to share with you what’s in my jar – and my exceptional gratitude for the people who made the moments in the jar possible.

In no particular order:

1.  An email from a former client, in response to mine to him to let him know I was leaving the law firm.  He called my testimony at an arbitration “one of the most impressive performances I have ever had the pleasure to observe” and remarked, “thank goodness you were on our side.”  He didn’t have to write that email, and I was touched that he did.

2.  When I was searching for a job, two wonderful friends – Jennifer Ress-Bush and Michelle Wood – reached out and offered me help with my résumé and put me in touch with their connections.  It was a beautiful gesture during a really difficult time, and I don’t know that either of them really knew then how much it meant.  I hope they do now.

3.  One night, on the way home from a band audition, Nate and I sang American Pie together in the car at the top of our lungs.  I discovered that Nate has an incredible singing voice, I loved with all my heart how vulnerable he was with me (and I with him) in those moments, and I was overjoyed at his excellent taste in music.  😉

4.  I reconnected with a friend I missed more than I even realized over an impromptu dinner and slumber party, which led to some of the best Sunday mornings – hiking, chatting, laughing, swearing, sweating.  I less-than-three you, Cynthia Orluck!

5.  I plowed through the entire Game of Thrones series of books in record time only to learn that I may never know how these fuckers end.  I have yet to find anything to fill the void left behind, so I’m reading them again.  Because, yes, they are that good.  (And, dammit, HBO – quit messing around!)

6.  My sister made it to the jar a ridiculous number of times.  My job, a little help with a PG&E crisis (which is a weird coincidence – right?) and a refrigerator.  But, mostly, hours and hours and hours of just listening to me spew forth whatever madness poured out while filling the silences with coffee, advice and patience.  You have no idea how much you were my life-line this year, dude.  “Thank you” just seems stupid, it’s such a gross understatement.  But, basically, I will play marbles with you no matter what time it is.

7.  My new boss made me a promise before I started my new job and asked me to trust him.  It was the last thing in the world I was capable of doing, but I wanted the job, so I took the gamble.  Before even my 90th day, he made good on the promise – and then some.  It was the sign I needed to confirm I hadn’t jumped from the frying pan to the fire.

8.  I met in person three amazing people whom I had met only virtually.  I met a fourth person whom I didn’t know in real life or in person but who is awesome in equal measure.  I then had one of the most fun nights of my life, eating, drinking, laughing, and playing with these folks.  I laughed so much, my stomach hurt the next day.  And, I loved that night so much that my heart hurt a little the next day, too.  It’s a strange kind of hangover you get when you get drunk on friends who live too far away.  Yet, I’d gladly do it again.

9.  I took a short, last-minute trip to Half Moon Bay with Helene in July.  She loved the beach.  I wrote about it here.  I want to find a way to bottle that experience and drink it through a straw when I need a dose of happy.

10.  After I shared on FB the “Awesomely Big List of Ways to Help Parents of Autistic Kids” post from Bec Oakley at snagglebox, my friend Juliet reached out to me and offered to help me in any way she could.  It was an unbelievably sweet, thoughtful and perfect gesture, and it led to a fun play date for the kids!

11.  When I was in the throes of IEP-meltdown, my wonderful friend Beth Glidden Anderson offered to provide feedback on Helene’s IEP goals.  She sent me back a spreadsheet of pure awesomesauce, which was clearly the product of a lot of her time.  It was also the most amazing, helpful gift, especially coming from a lady who has her hands full to say the least.  I think the expression should be changed to, “The fuller the hands, the bigger the heart,” in honor of Beth.

12.  Hot on Beth’s heels was my friend, Robin Gredinger.  Once upon a time, Robin was 16 years old and crashing my car into a mailbox.  Today, she is a marvelous woman who gives her heart to middle schoolers and gave her time and thoughts to me to help me through Helene’s IEP process.  I love who you grew into, Rob.  You are a special lady, as I always knew you would be.  😉

13.  The day before I started my new job, the Hubs brought me home a new necklace to wear.  The necklace is beautiful, and I love it.  What I really loved, though, was what it said:  “I support you.  I want you to succeed.”  Every marriage is tested, but I dare say ours was tested more than many last year.  Yet, here we are.  I love you.  Still and always.

14.  My blog – despite my neglect and apathy – still grew, and I appreciate every single reader and comment.  (Even the spammers; you guys really provide me some great material.)  Also, there are 368 people in the world who think that what I have to say is worth reading.  That’s, like, 368 more than I thought!

15.  I had a therapist who wanted so much to see me succeed at getting emotionally healthy, she worked for free about half the time I spent with her.  I hope she reads my blog so that she’s reminded that I did not forget my promise to pay it forward: I donated my time to a few parents in need of IEP help this year, and I hope I’ve made up for your generosity and kindness – and then some.  Just in case, I fed at least a dozen expired parking meters.  😉

16.  My friend, Elizabeth Francois, agreed to do this project with me!  I really hope she stuck it out and that she shares her list.  If she didn’t, I am grateful nonetheless, because her participation gave me a sense of purpose I needed to get going on this.

So, 2013 wasn’t all horrible.  Was it my favorite year?  No.  But, I don’t know that I’ve reflected on any year and though, Wow! That year was really fabulous. I’d bet that 80%-ish of Twitter comments and FB posts/shares at the end of every year (at least since 2004) snark about how the old year can’t end or the new year start soon enough.  If I learned anything this year, though, I learned that time is an invaluable commodity.  You have no idea how much of it you have, you cannot save it, you cannot get it back, and you cannot borrow it, so you cannot possibly place a price on it.  I don’t want to wish any of it away, and I don’t want to waste it.  Instead, I want to take these last hours of 2013 to reflect on what went right and what I learned from what went wrong.  I might spend tomorrow getting organized.  I might throw on some yoga pants for the purpose of actual yoga.  I might transfer a few bucks into my savings account.  (For now.)  I might think about healthier eating, but – let’s be real – it will be while I eat ALL the gingerbread cake I’m about to make.  The only thing I am resolved to do is to remember the moments from 2014 worth remembering, forget the moments not worth remembering, and enjoy the time I’m given every.  single.  day.

Happy New Year.

This Fleeting Moment of Levity Brought to You by PMS

… because if I don’t laugh, I will shank someone.™

It’s cute, really, the way television ads make PMS seem like this 30-second drama that ends in frolicking around a beach in a white bathing suit.  Let me break it down for you, though.

One night, you go to bed a relatively sane, properly nourished, pH-balanced woman in her forties who would rather have a daily bikini wax than actually wear one – let alone a WHITE one.  The next morning – and by morning I mean THE MOMENT THE SUN RISES even though it’s Saturday, you could’ve totally slept in and no one else in the house – hell, NEIGHBORHOOD – is yet awake – you find you’ve changed.  “Flowered,” “blossomed” – call it whatever ridiculous gardening analogy you want – the truth is this:  There is now a four-alarm fire going on in your lower back.  Your intestines and about half your internal organs are pushing, shoving and kicking their way out of the “building” through your uterus.  There is an oil slick developing on your face reminiscent of the Exxon Valdez, and the only thing that’s “blossomed” is a pimple the size of Mount Everest.  For good measure, you’ll get that zit (a) somewhere dead-center on your face so that you spend the day certain that everyone is staring at the neon target-like deformity now bulging from your head; or (b) somewhere you cannot reach but can constantly feel so that you spend the day certain that estrogen and progesterone are actually chemicals banned by several treaties and contemplate submitting your body to a U.N. inspection team.

Before and After

That’s not enough, though.  As your ovaries and kidneys crowd toward your uterus in their crazed attempt to flee,  your stomach suddenly has room to expand.  Now, the only way to satisfy the ridiculous hunger pangs caused by this impromptu remodel is to eat four pounds of chocolate, a large pizza, a hot fudge sundae, 37 croissants and your young.

Apparently, you also spent your night licking a salt block, because your body now retains enough water to irrigate a desert, leaving you torn between hating the ankles that look like a Tempurpedic mattress and loving the boobs that actually stay up on their own again – because they’ve hardened like concrete.  This conflict will resolve itself the first time you bump into something with your boobs – like your shirt or your bra – and gain valuable insight into what electroshock feels like.  Doctors recommend exercise to alleviate these symptoms.  I say that I hope these same doctors – who clearly do not have boobs – come down with a vicious case of crotch crickets.

But, wait!  There’s more!  Even though you were wide awake at dark o’clock, you will be late for whatever you have to do.  This is probably because you will put on every piece of clothing you own when trying to get dressed and NONE of your clothes will fit.  You will trade pieces around like you are a human Rubik’s cube with the same result – impossible to fucking solve.  You will decide that black yoga pants can be dressed up if you try hard enough.  You will try to put on your make-up, but it’s really hard to get your eyeliner and mascara right when you’re crying about how you have nothing to wear.  Oh, and your hair.  Your hair has become a hay stack, all its moisture having crept off the follicles and onto your face as you slept.  The only “product” that will help you now is an electric razor.  You will contemplate your cheek bone structure in the mirror, wondering whether Sinead and Demi were on to something.  You will recall your last hormonal haircut and achieve a second of clarity so pure and sweet you will be certain the hair-scrunchie is actually some type of prophylactic device that inhibits such rash decision making.

Because you’ve now become a lighted stick of dynamite, why not start shortening the fuse?  It is just about a given that you will be out of coffee, milk or both.  Your car will need gas.  You will forget your keys or lock them in your car.  At least one – but probably all – of your children will contain more whine than a ton of grapes so that the mere sound of their breathing is like fingernails on a chalkboard.  You will have to go to a store to buy feminine hygiene products, which ensures that you will either (a) buy $347 worth of other items (about $340 of which are absolutely pointless) in a futile effort to mask your purchase of tampons or (b) find yourself in the checkout line of the youngest and best-looking checker while purchasing nothing but tampons.  There will be men waiting in line both in front of and behind you.  A price check will be needed.  You will start to fantasize that you are Medusa.  Nervous laughter will ensue.  Everyone will back away slowly.

Medusa

By the time you get home, you’ll have ingested your weight in Advil and look like someone dragged you backward through a bramble bush.  You will take off your heels (What?  Heels go with yoga pants.), massage your sausage feet and trudge to the kitchen.  En route, you will step on a Lego brick/Lincoln Log/Chinese throwing star/rusty nail.  The pain signal will wind its way from your foot to that lesser-known neural center of your brain called batshitcrazyium.  You will unleash a rant on your child(ren) and spousal unit during which you unload every.  single.  thing.  they’ve ever done wrong (plus some stuff you know for sure they’re gonna do wrong someday but haven’t yet . . . or that you completely made up).  No one will be foolish enough to come near you without the requisite sacrificial offerings of gin, bacon or Xanax.  The smart ones will gather up their charred remains and decide that now would be an excellent time to visit the grandparents or least let you have control of the television remote.

You will watch Steel Magnolias, have a good, cathartic cry.  You will vent about this on Facebook to your girlfriends and marvel at how even women who spend only virtual time together end up on the same cycle.  You will ponder why it has yet to occur to the U.S. military that a troop of women with synchronized menstrual cycles and no access to ibuprofen might actually be the ultimate weapon of mass destruction.  Or, you know, you’ll write a blog post as a public service to people within your blast radius.

Ain’t Nobody Fresher than My “Clique”

Outside of the Weigh In Wednesday posts, which are pretty innocuous, I haven’t blogged much lately.  I thought maybe I had a bit of writer’s block.  I think, though, the truth is that I developed something of a writer’s phobia.

Over the past year – and particularly the last couple of months – I’ve watched the train wreck that is blogging in the special needs communities.  The communities tear themselves apart from the inside out: parents vs. self-advocates vs. anti-vaxxers vs. non-parents who have opinions vs. ableists vs. people who don’t “check their privilege” vs. you name it.  It saddens me deeply.

It also scares me, because I truly believe that this in-fighting – and it is in-fighting – is the biggest obstacle to acceptance, inclusion, (honest) awareness and support for those whose development follows a path less traveled.  Instead of amplifying each other’s voices to a volume that can no longer be ignored by people with some real decision-making power, we drown each other out and reduce our arguments to a trash heap of fallacies, non-sequiturs, false analogies and ad hominem attacks.  In the end, the very constituencies we wish to persuade dismiss us as nothing more than a group of trolls.  In too many cases, rightfully so.

I mostly stay out of the fray other than a few occasions on which someone(s) launched a very targeted and unnecessarily personal attack against bloggers I know (in some cases, in “real” life, although let me be clear that my online friends are very, very real to me).  Even then, there were times I didn’t come to someone’s defense when I should have, because continuously pleading for respectful discourse and reasoned debate on the Internet is kind of like banging your head against a wall because it feels so good when you stop.  Rational argument isn’t fun, I guess.  It requires actual work – research, analytical thought, critical reasoning.  It’s easier to lob around opinions masquerading as facts and to hurl insults and accusations.  Why bother with evidence when you can scapegoat someone?

Ultimately, the vacuum of conflict made me afraid to blog.  I started this blog as a gift to myself – a mental outlet for all the stuff on my mind.  I didn’t intend for it to become anything specific, let alone autism-specific.  I just wanted a space to word vomit and maybe get a little dialogue going.  If I helped someone in the process, even better.  Ultimately, though, I both wanted and needed this to be a safe space.  By safe, I don’t mean necessarily conflict-free.  But, by safe, I definitely mean free of unrelenting personal attacks either in the comments here or elsewhere on the interwebs. So, I laid low. Way low.

However, I made two super-rookie mistakes yesterday.  First, I read the comments on a Huffington Post article about the Disney guest assistance program.  I learned that my husband, my son and I are apparently “entitled” because our daughter/sister is autistic.  I guess that’s true if by “entitled” you mean that her father and I have the privilege of carpooling her to six different therapy appointments each week (her attendance at which effectively keeps both of us underemployed), living in a school district that completely lacks the resources to educate her, constantly struggling to find social activities in which she can actually and meaningfully participate, and facing the very real possibility that she will require care for the rest of her life with the knowledge that her life expectancy is far greater than her father’s and mine.  I am pretty sure the only thing that “entitles” us to is some mother-effing compassion.  But, you know.

On the heels of this mistake, I read a blog post by an autistic adult blogger whose writing I hadn’t previously read.  The post (to which I am deliberately not linking) is a critique of Facebook, Twitter or other social media “cliques” (this was the blogger’s word), which the blogger described as groups of people who routinely comment on, share or otherwise promote each other’s writing.  The conclusion drawn by this blogger is that these “cliques” either formed with the intent to or evolved in purpose to exclude others.  I think – and I could very well be wrong – that the implicit presumption the author makes is that these “cliques” not only do not include autistic persons but actively seek to exclude them (or their points of view).

As it happens, I have a circle of blogging friends who meet this author’s definition of a clique (with the notable exception that the circle does, in fact, include autistic persons and, hence, their points of view – which may or may not be those of the author above), and I have a couple of good reasons (which are not germane to this conversation) to believe this blogger referred to that circle.  I’m not obligated to justify the group’s existence, and I won’t.  But, the stupidity – yes, STUPIDITY – of even rhetorically raising and “debating” this as an issue made me very, very mad.  So, I am going to talk about the group for the benefit of parents and caregivers who find themselves in need of support.

The ways in which this particular circle of people found one another are as varied as you can imagine.  The ways in which our relationships developed and grew or diminished over time are equally varied.  The composition of the group doesn’t change dramatically, but people come and people go. The relationships formed organically and out of commonalities that go well beyond shared parenting experiences.  As human beings (regardless of neurological status) we found a way to embrace mental, physical, financial, gender, racial, ethnic, stylistic, political, religious – and, yes – neurological differences that shatter the limits your typical “high school” clique might find socially tolerable.  There was no pledge class, no hazing, no secret handshake, no application.  Sometimes, people just find each other and chemistry does the rest.  There is nothing wrong with that.

Perhaps more importantly, however, this social circle is not simply about blogging.  We’re not in it to up our shares, likes, views, traffic or drown out any category of voices with a blog.  I know this might be hard to believe, but our lives are a little too full of responsibilities to spend our precious time conspiring to crowd anyone out of the LIMITLESS Internet.  Rather, this social circle is about support – emotional, physical, practical, intellectual, economic, potentially life-saving support.  We don’t just share one another’s writing; we share our lives.  We are friends. We love and trust each other.  So it leaves me to wonder: Why – in the name of bacon -blueberry pancakes and all else holy – and especially in the wake of the recent tragic deaths of autistic children at the hands of parents who came to the dark, dark place that made such an unthinkable action seem like the only course – is this a thing? Why would anyone (and especially an autistic adult) look on a group of special needs parents supporting one another’s efforts to not only raise children but to raise awareness, encourage acceptance, enhance diversity, and increase opportunities as something that at best is high-schoolish and at worst is sinister?  Why would this be anything but positive?

The one-two punch of these mistakes had an upside for me. I am done wearing kid gloves.  I will not walk on eggshells or fear my own shadow to avoid “offending” someone who will use any excuse – even a parent support group – to pick a fight. I will not be bullied into silence. You will not make me afraid to say what I came here to say, because my experience – the truth of my experience – may let another person know he or she is not alone.  It may be the difference between reaching for help or reaching for an end.  You can hurl all the accusations you want at me – I’m ableist, I’m a bad parent, I’m abusive, I’m privileged – I DO NOT CARE.  Right now, all I want is to reach through the fog of your words (which I know are really your hurt – and when you’re ready to talk about that, let’s do it) and find that mom, that dad, that grandparent, that caregiver, that therapist, that teacher, that aide who has run out of gas, reached the end of his rope, hit her wall.  To you I want to say:  I know you need support.  I know that parenting/caring for/teaching a special needs child is hard.  I know that people you trust will let you down.  I know you will be criticized from all directions.

But …

If you are here for me, I am here for you.

If you will listen to me, I will listen to you.

If you will not judge me, I will not judge you.

If you will help me, I will help you.

Welcome to my clique.

Lake Tahoe, which Is Really Half Moon Bay: An Adventure

Right now, there is a commercial on frequently in our area. The commercial promotes Lake Tahoe tourism by showing gorgeous images of Lake Tahoe with animated “monsters” superimposed. If your kid has ever played the Endless Alphabet game, you know what the animations look like. Helene is utterly dazzled by the commercial and has been asking to go to Lake Tahoe for a while now. (Sorry – can’t find a video of it to share!)

Today, I had the opportunity (because of my awesome sister!) to take Helene to Half Moon Bay for the night. If you’ve never been, Half Moon Bay is located down Highway 1 on the northern coast of California. It’s a gorgeous expanse of cliff-bordered coastline and rocky surf. I asked Helene if she wanted to go on a journey with me to the beach. “Yes!,” she exclaimed. “Let’s go to Lake Tahoe.” Foolishly, I tried to correct her. “No,” I said, “we’re going to Half Moon Bay.”

“LAKE TAHOE!”

“Ok. We’re going to Lake Tahoe. Let’s get in the car.”

And so began our 2-hour voyage from home to this spectacular place. The transition from the car to the hotel did not bode well for the trip. Anxiety and echolalia were in full gear. There was – of all things – a dog in the lobby, and that just about put her over the edge. But, once we got into the hotel room and she caught a look at the panoramic view of the ocean from the balcony, something magical happened. She relaxed – not completely but enough for me to get her changed into a swimsuit and interested in walking down to the beach.

The walk to the beach was a challenge. Next time you’re near the water, really pay attention to how many birds are around. For poor Helene, walking the half mile from the room down to the stairway to the beach was like walking through a minefield. The seagulls were fine – the “mine, mine, mine”s are a known quantity from endless Finding Nemo viewing. But an over-abundance of Bug’s Life has ruined her for other birds – especially black birds. There are a lot of damn black birds near the water.

Once we got down to the beach, though, none of that mattered. She rushed to meet the water, ignoring the strange feeling of sand between her toes, and shouted gleefully when the frigid liquid ran up to grab her toes and ankles. She willingly held my hand and laughed all the way from her toes when the first really big wave knocked her right off her feet. Without much prompting from me, it was as though she immediately had a respect for the power of the ocean – she would walk forward juuuuuuuust far enough to get a good splashing but not so far that I started to panic.

And there we stood – hand-in-hand – at the shoreline of the great Pacific Ocean for more than an hour. Do you know what it feels like to touch pure joy? I do. It feels like the hand of a six-year-old in the hand of a mom who knows exactly what her little girl is thinking and feeling for 60 minutes. It’s the communication of a thousand pages of unspoken words. It’s the heart massage of laughter that comes all the way from the toes. It’s the tickle of a voice bubbling over with excitement. It’s taking the one-two punch of sand in your hair and salt water in your mouth then getting up and shouting, “Another big one!!” while stamping at the receding water with your feet. It’s a brief and fleeting moment of unified understanding.

Our adventures went on through the day – a stubbed toe on the way back from the beach, enough time in the swimming pool to turn us both to prunes, a luxurious bubble bath in the ridiculously amazing bathtub at the hotel – but Helene is back where we started. She is perched in a patio chair, surrounded by her favorite blankets, eating a peanut butter and jelly sandwich and staring wistfully at the ocean. A bagpipe player is going on in the courtyard below, and after each song, Helene claps and says, “Well done!” (Which only proves the Irish somewhere in our cross-pollenated bloodlines.) She has been sitting in that chair for nearly two hours, utterly transfixed.

Half Moon Bay from balconyHelene curled into balcony chair

I think back to a night – at the pinnacle of the stressful time that was the divorce from my ex-husband – when I escaped to a friend’s house in Bodega Bay. I hadn’t slept in the better part of a week, but the sound of the waves crashing against the rocks below the house lulled me to sleep like the perfect lullaby, somehow giving me the strength to keep going. And, I wonder … I wonder if this little day trip is the same kind of magical respite for my little girl from the chaos and disorder of the outside world or the jumble of signals firing in her brain that never quite transmit. Whatever it is, I am looking at her right now without a shadow of doubt that she is happy and content. It is one of the best vacation days I could possibly ask to have.

“Mother Bear,” Helene says to me, “isn’t it beautiful?”

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Acing the Autism Momming Test, Issue #1

Sure, you think you can ace the Autism Momming Test, but we’ll see.  Sharpen that #2 pencil and keep reading …

A Girl Walks out of a Grocery Store with a Balloon:

Once upon a time, in a not-so-far-away land, there was a little girl*.  She was a cute, sweet-looking girl all of six tender years.  She wore little black shorts, a little gray top and bright orange sneakers.  Her sandy brown hair swung back and forth in its ponytail – cinched with a bright orange elastic – and she bounced a little when she walked.

The little girl’s mother^ took the little girl to the grocery store.  The little girl dutifully followed her mother up and down the aisles, stopping occasionally to pluck items from shelves – red chippies, blue chippies, peaches, bananas, goldfish crackers – and toss them in the cart, humming away and waving the delicate pink balloon acquired from the nice lady in the Floral Department. The little girl waited patiently in line while her mother paid for the groceries.

Then, it all went to hell in a … shopping basket.

No sooner were her mother’s hands occupied by a full grocery cart, a handbag, a wallet, a cell phone, a receipt and some car keys, than the little girl decided to utterly lose her ability to hear and follow direction of any kind.  In the 20 feet from the checkout counter to the front door, the little girl managed to touch at least seven things she shouldn’t and block the path of at least a dozen shoppers.  Things did not bode well for the parking lot to come.  A lot of $*&% could go awry between the door and the car.

Somehow, the little girl’s mother convinced the little girl to hold onto the shopping cart with one hand as they entered the parking lot.  The first five feet went smoothly.  But then –

DUH DUH DUHHHHHHHH!

An unexpected diversion!

Slowly, an elderly, white-haired man wearing a black hat and sporting a decent-sized boiler approached.  Before he could smile, wave or say hello, the little girl bolted in his direction and …

 

BAM!

The little girl straight punched the old man in the stomach!  The little girl yelled “Hi-Ya!” as she did it.  The old man let out a grunt that sounded like someone stepped on a frog while saying, “Oh!”

THE END.

Comprehension Question 1

The mother’s proper response to this incident is:

A.  “Oh my god, I am so, so sorry.”

B.  A nervous snort laugh (followed by an I’m-so-embarrassed laugh that only gets worse the more you think about it)

C.  A mental inventory of all the First Aid she knows and whether the insurance bill was paid this month

D.  All of the above.  At the same time.  While fast-walking toward car, cackling miscreant in tow, and repeatedly uttering, “That is not okay.  That is not okay.”

Comprehension Question 2

 The main idea of this story is:

A.  How well a little girl generalized rough-housing with her grandfather to the broader social community

B.  How important it is to recognize the dangerous subliminal messaging in The Wonder Pets and Jack’s Big Music Show

C.  How valuable the purchase of two balloons might be in keeping “quiet hands”

D. How parenting a kid on the spectrum produces truly marvelous blog content

E.  How a young girl decided she would be a ninja when she grew up

 

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*I changed Helene’s name for dramatic effect, given she is neither innocent nor – apparently – in need of protection.

^That’d be me.  I’m writing about me in the third person because I keep hoping that might make this whole thing unhappen to me and instead happen to some fictional mother elsewhere in the parking lot of a grocery store far, far, far … far, far … nope, farther … away.