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.

 

 

 

 

 

 

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.

Weigh In Wednesday #5

The best time to plant a tree was 20 years ago.  The second best time is now. ~ Chinese Proverb

Weigh In Wednesday #5 – Woot woot!

you are hereWeigh In Wednesday 5

What went well this week?

Another good exercise week, including a fantastic discovery:  I love hiking!  I have always been pretty sure that I would never find exercise I enjoyed as much as running.  Running always makes me feel like I’ve really worked.  It also allows me to retreat into myself – I put my headphones on and I concentrate on my rhythm and pace.  When I’m having a good-run day, it’s almost like lucid dreaming.  I can get so lost in my thoughts, I’ve run 2 miles before I even realize it.  I’ve never really gotten to that state with any other kind of exercise.  Hiking, though, has been an awesome discovery.  First, it is super challenging, but not in an oh-my-god-I’d-rather-fart-in-public-every-time-I-go-out kind of way. Second, it made me realize that I live in a place that people actually pay good money to visit because it’s FREAKIN’ GORGEOUS.  Beach, mountains, trees … yep.  Got all that.  Third, I can really share it.  I’ve tried running with folks, but it is really hard to carry on a conversation when you’re gasping for air, clutching your chest and praying your running partner’s CPR training is current.  There’s a lot less oxygen deprivation and chest clutching in hiking, which improves conversation.  At least for now.

What did not go well this week?

I got a little loosey-goosey in the calorie department.  I didn’t completely blow my calorie intake on any given day, but I definitely made some less-than-good food choices this week.  There may or may not have been a medium McDonald’s french fry on the menu when I found myself uncontrollably desiring salty, potato-y, starchy, carbo-y goodness.

Whaddya got to eat around here?

tortellini cream pancetta peas

Tortellini with Pancetta & Peas in Cream Sauce

This is one of my favorite dinners, and it’s pretty easy.  For the tortellini, I use Buitoni three-cheese tortellini.  One package contains about 2 servings of pasta – maybe a little more.  I make the sauce with lowfat milk, buttermilk, sour cream, flour and salt/pepper.  Add about one cup of peas and about 3-4 ounces of pancetta.  The result?  about 450 calories of magical deliciousness in about 1.5 cups of food.  Take THAT Olive Garden.

And how do you feel about that?

Something magical happened to me this week.  I started to feel the need to exercise.  When I get into the habit of exercising, I actually experience withdrawal if I skip a day.  That feeling made me get out and run on Monday even though it was hot, I was tired, my IT bands were sore and I hadn’t watched Homeland yet.  At the end of that run, I felt so good.  Not physically good, mind you.  Physically, I wanted to be rolled in morphine, dipped in Flexeril and whipped into a frothy cocktail of ibuprofen-acetomenaphine-percoset sauce.  But, mentally, I felt super-extra-marvelous.  I felt strong.  I felt fabulous.  It might have had something to do with the high school boys that passed me up on the running trail at mile one but who I passed up at mile four.  Maybe.  Just a little.

Tip of the Week

FAT.  Nonfat and low fat foods are not necessarily better.  First, there’s the taste factor.  One of my most favorite-ist people in the world and I almost ended up in a fist fight after she RUINED my after-workout baked potato by convincing me to put nonfat sour cream on it.  I’m pretty sure I would rather eat a potato that fell into a pile of sawdust and dog hair.  This happened like 17 years ago, too.  That’s how traumatizing it was.  More importantly, though, these things don’t necessarily equate with a healthier food choice.  Many nonfat and low fat foods are made palatable (or edible) by replacing the fat with salt or sugar.  So, you may be consuming fewer calories, but they aren’t necessarily “better” calories.  Read nutrition labels not just for calories and fat grams but also for sodium and sugar content.  Many times, you can meet caloric goals by using “regular” versions of foods but observing portion control (e.g., 2 tablespoons of sour cream on your baked potato, not 1/2 cup). 

How YOU doin’?

I pass the Celery Stalk of Talk to you.  How’s it going this week?

Weigh In Wednesday #4

Recipe for Success

Weigh In Wednesday #4 – Woot woot!

you are hereWeigh In Wednesday #4

What went well this week?

EXERCISE!

200 miles

I was money this week in the exercise department.  I did my longest run to date – 6.80 miles.  My runs have all been at least 4 miles, and my time is improving.  Best mile this week?  10:57.

What did not go well this week?

I knew this week was coming.  Candidly, I’m surprised I made it a whole month before it arrived.  The dreaded set-back week.  My only explanation for the weight gain is hormones, because I was great this week about what I ate, journaling it and exercising.  Also, I lost an inch around my waist, three inches from my hips and my body fat percentage is improving.  So, I chalk this week up to bloat and let it slide like water of a duck’s back.

Whaddya got to eat around here?

ham sandwich Screen Shot 2013-10-02 at 9.37.19 PM

This is my go-to lunch right now.  I recently discovered the wonderful deliciousness that pepperocinis bring to a sandwich.  Holy awesomesauce.  I highly recommend peeking at your teeth after this meal, though.  Unless you want to walk around with poppy seeds in your grill all day.  Not that this happened to me.  At all.  Ever.

And how do you feel about that?

I feel accomplished, and I feel proud of myself for really committing to this.  I’m disappointed about the weight gain, but I’m not discouraged.  I know this is part of the process, and I still feel like I made great progress this week.  As I said at the beginning, this journey isn’t just about my weight – it’s about ALL of me feeling healthy.  That part is definitely working.

Tip of the Week

Don’t depend solely on the scale as your litmus test for how you’re doing.  Remember, exercise impacts your weight loss not just by burning calories but by burning stress.  When you are under stress, your body releases a hormone called cortisol.  Cortisol basically tells your body, Danger, Will Robinson.  That bat signal tells your fat cells to hold on tight instead of metabolizing, because your body thinks you need to conserve fat as an energy source in case of emergency.  When you exercise, your body releases adrenaline and endorphins – these hormones tell your brain that you are happy, reducing stress.  Reducing stress reduces cortisol, which (hopefully) increases metabolism, because your fat cells aren’t needed.  Added bonus:  your brain does a better job with seratonin, which means you feel emotionally better, too!

How YOU doin’?

I pass the Celery Stalk of Talk to you.  How’s it going this week?

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.