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

 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

*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.

 

 

The IEP My Kid Really Needs

Because she’s Smarty McSmartypants, Lexi over at Mostly True Stuff, had the brilliant idea that our kids’ IEPs perhaps need some goals that are – well – slightly more in line with their daily realities.  I couldn’t agree more, and now that summer is here and we’ve survived another grueling round of year-end assessments, it’s time for a little levity.  Also – yay! – something to write about!

So, here it is – the IEP Helene Really Needs:

Goal 1: Given an iPad with a WiFi connection, Helene will successfully avoid all parental blocking tools to locate inappropriate material on YouTube in under ten seconds over 9 out of 10 consecutive trials.  Satisfactory progress toward this goal demonstrates readiness to program the DVR.  Mastery of this skill demonstrates readiness to troubleshoot the wireless printer Mommy cannot get to work.

Goal 2:  Given only non-verbal prompting (e.g., the Mom-Stare-of-Doom), Helene will NOT put her hands in the toilet after using it, no matter how compelling the toilet paper might be.  Satisfactory progress toward goal is achieved at the point a bottle of hand soap and a package of toilet paper lasts more than one week.

Goal 3:  Working independently, Helene will demonstrate increased language acquisition by memorizing the entire script of Finding Nemo.  Helene’s generalization of portions of dialogue to everyday situations demonstrates mastery of this skill.  For example, shouting “DO NOT TOUCH THE TENTACLES! ONLY THE TOPS!” when Mom tries to touch her arm in a crowded grocery store. Or, walking up to Papa and whispering, “Well, where is it?” in a sinister voice, leaving Papa vaguely uncomfortable for the rest of the day as to whether that was an actual question and about what “it” is.

Goal 4:  By December 2013, Helene will demonstrate the ability to recall facts as measured by her knowledge of the precise location of every McDonalds within a 25-mile radius of home and her ability to give accurate turn-by-turn directions to said McDonalds in 100% of trials.  Mastery of this skill will demonstrate readiness for finding the last place she left an object she cannot live without at a given moment.  Extra credit:  greeting the drive-thru operator by name.  Double-bonus:  The drive-thru operator greets Helene by name.  (e.g., “Hi, Ms. Maria!”  “Well, hello, Helene.  You look pretty today!”)

Goal 5:  Helene will improve her social and social communication skills by interacting at least 30 minutes two times per week with her brother and his 15-year-old friends.  Mastery of this skill is demonstrated by Helene’s ability to select suitable weaponry for Call of Duty: Black Ops 2 missions in 80% of attempts over 9 out of 10 consecutive trials.  Extra credit:  Generalization of “dude,” “Cool story, bro” and “Yeah, I wanna piece of you!” to appropriate contexts.

Goal 6:  Helene will demonstrate increased gross and fine motor skills by successfully evading attempts to clip her fingernails given two adults attempting to restrain all moving limbs, bribery with marshmallows or application of fingernail clippers during deep sleep.  Mastery of this skill demonstrates readiness for putting on her own pants.  Mastery may also demonstrate readiness for casting in Cirque de Soleil or future employment as a ninja.

Goal 7:   Given access to Yo Gabba Gabba, Helene will demonstrate increased speech-sound articulation as measured by her ability to beat box better than Biz Markie in 80% of attempts.  Mastery of this skill demonstrates readiness for a recording contract.

Goal 8:  Helene will demonstrate fluent problem-solving skills by successfully locating a hidden object on the first attempt in 10 out of 10 trials, when object is hidden while Helene is sleeping or out of the house.  Mastery of this skill demonstrates readiness for CIA recruitment.

Goal 9: Given prior verbal modeling by an adult, Helene will shout — with crystal-clear enunciation and pitch-perfect tone — “Goddammit!” after injuring herself, knocking over a block tower, dropping her orange juice or stepping on a toy, but only if a therapist, social worker, teacher or judgmental stranger is present.  Mastery of this skill demonstrates readiness for a driver’s license.

Goal 10:  Helene will demonstrate increased social communication skills by participating in turn-taking activities, such as playing “Candy Land.”  Helene will demonstrate satisfactory progress toward this goal by figuring out how to cheat at said game and doing so shamelessly.  Mastery of this skill demonstrates readiness for lots of things but it mostly just confirms that she is biologically related to her parents.

Goal 11:  Helene will attend to an activity through completion as demonstrated by her complete refusal to accept or to be daunted by the laws of physics:

Determination

Determination

Got an IEP goal for your kid you’d like to share?  Please do!  We could all use a little break this summer.  🙂

I made a mistake and then I fixed it.

I knew not long into practicing law that I made a career mistake. But, I felt trapped. My ego, my financial situation, my student loans, my expectations of myself, the expectations of others — all of these things made me feel as though I had no choice but to make a go of it. So, made a go of it I did for 12 years. Hell, I knew I hated being a lawyer when I started this blog, but all you have to do is read the title I chose – ProfMomEsq – or the “About Me” page to see how I nonetheless wrapped up law practice into my personal identity.

It probably isn’t worth it to rehash all the reasons why I don’t like law practice. There are too many reasons, and I’ve written about it before. I suppose some of the reasons apply to lawyers in general, but many apply only to me. The truth – which took me a very long time to realize – is that the reasons I hate being a lawyer are neither “right” nor “wrong.” They just are. So, ultimately, I had only a simple choice: did I want to be happy or unhappy? Pretty easy, right?

Yet, it took me 12 years — 12 YEARS — to find the strength not just to say I don’t want to be a lawyer anymore but to actually do something about it. You know what I did? I quit being a lawyer. Friday is my last day. I sent my goodbye email to my colleagues yesterday. I start an entirely new, non-lawyer job on Monday. And while I am a little nervous, I am mostly so thrilled that I feel as though I float down the hallways of the firm now, leaving a trail of pixie dust and the vague scent of warm chocolate chip cookies in my wake. I keep looking at myself in the mirror with this feeling of relief and surprise that – yep – I still exist even though I jettisoned the bar card.

As sunshine-y and rainbow-y as I am for myself, I can’t help but be sad for the lawyers I’ve talked to this week – colleagues, opposing counsel, clients – who remark about how jealous or envious they are of my decision to leave the profession or how brave I am to take this step. It wasn’t bravery that got me here. It was desperation. And, the envy is wasted energy. I want to tell each of them to spend that energy finding their passions. But, I know that the words are not enough. Like losing weight, quitting smoking or ending a bad relationship, leaving a career takes will power, and it is so hard to find the will. This is true even if your head understands that the change would be “good” for you, because we easily confuse “good” the feeling with “good” the outcome. Eating chocolate cake feels good. The rush of nicotine feels good. The momentary affection of someone you desperately want to love you feels good. But, that kind of “good” works some mischievous chemical voodoo on our brains and hearts that makes what is truly “good” (e.g, healthy) for us seem less desirable – to hell with logic and reason.

I had to get to the very edge of my sanity to understand this and – more importantly – to do something about it. So, while I listen to the stream of lawyers expressing envy or jealousy at my escape from the billable-hours grind, my heart aches for them. The answer is so simple it is literally unbelievable: do something else. But, we humans are so good at “justifying” where we are when we believe we are stuck. I won’t make as much money. I still have student loans. It will be better when I make partner. My clients need me. I don’t want to waste my degree. My family/friends/peers will think I’m a loser/quitter/weak/stupid.

What I learned (thanks to the happy coincidence of meeting a social worker who “got” me) is to stop evaluating my life choices as “right” or “wrong” and to start evaluating them as “healthy” or “unhealthy.”

Well, hey there, you know what’s not healthy? Spending more time doing a soul-sucking job that you absolutely hate than you do with the family and friends you love. It makes you a surprisingly unpleasant person. Paradoxically for me, it also made me put up with a lot of crap that I never in a million years would imagine tolerating.

Many folks I know are fond of the expression, “God gives you only what you can handle.” I don’t think that’s true. I have complicated feelings about God, but even when I’m open to the idea of a supreme being who has a plan for my life, I would have to believe that God grossly overestimates my threshold capacity for stress if he thinks I can “handle” the competing demands of law practice, raising two children, being a wife, addressing financial setbacks and learning/navigating the ins and outs of special education in a public school bureaucracy. Rather, I think God/life/karma/the universe deliberately presents us with events we can’t handle as a means of getting our attention and forcing us to make a decision. If I really bought into the God-gives-you-only-what-you-can-handle philosophy, I honestly believe I would be dead. I would’ve struggled mightily to continue to balance all those things, and I would’ve had a heart attack – a literal, chest-crushing heart attack. Instead, I saw it (eventually and after a lot of therapy) as a message: decide what is most important and focus on that.

My children are important to me. My husband is important to me. I am important to me. Being a lawyer is not important to me. I don’t view working as optional because of our family’s financial situation, but “needing” to work doesn’t mean I “need” to be a lawyer. And, funny enough, there are actually other (better) paying and more satisfying jobs out there!

So … what’s my point? Don’t waste your life doing what you think is “right,” when you can dedicate your life to doing what is healthy. Don’t confuse what feels good with what is good. Start small – plan every day to do just one thing that is healthy for you, and watch it snowball. Two months ago, I walked into an intensive outpatient therapy group for my panic disorder, and I stunned a room full of people dealing with abuse, addiction, disorders and depression into absolute silence when I told the story of my life. Five weeks later, I left that group hearing the applause of its members when I announced I had a new job and was on the path to a new career. That happened because every day I had to commit to doing something better, and every day I was held accountable for it by others until I was strong enough to hold myself accountable.

I know a lot of you reading this are balancing or juggling your own competing responsibilities, so I challenge you to find one thing – no matter how big or small – you will commit to doing today to help make your life better. Not your child’s life, not your spouse’s life, not you parent’s life — YOUR LIFE. Then, feel free to share it if you want some accountability.

In the meantime, I’ll be over here, thinking up a new name for this blog. 🙂

Happy Birthday Sylvia Chauveneux, Love Cheryl Tiegs

Today is my little sister’s birthday.

Happy Birthday

I so wish we still had that crown somewhere. I’d make you wear it all day.

When I asked my sister what she wanted, she told me she wanted to be immortalized in a post on my blog. I was prepared to bake a cake, babysit my niece, maybe even buy some wine with an actual cork. I wasn’t prepared for this. This is a lot of pressure, man. This blog post can go only one of two ways: the feeling you get when you open the door and Ed McMahon is standing there with a shit-ton of balloons and a poster board check made out to you for an obscene amount of money, or the feeling you get when you open a gift of sexy lingerie from your weird aunt while your entire family is watching you and the room fills up with that awkward state between stunned silence and hysterical laughter when no one wants to be the first one to break.

I gotta say … I’m not really sure which one I’m going for here.

I have more than three decades of stories.  That’s an overwhelming amount of information to condense into a single blog post.  So, we’re going to do this photo-essay style.  I know, I know.  It’s kind of a cheap way out.  But, these pictures tell stories that my words cannot.

Look at that happy baby smile. I’m pretty sure my mouth is smiling here, but my mind is thinking, “Touch my toys, and I will eff you up, munchkin.”

My sister was mostly cool to have around.  I got a puppy out of the deal, so it wasn’t all bad.  Also, she was pretty entertaining.  She was born back in the days of televisions sets that had dials and rabbit-ear antennas, so it was her or Sesame Street.  I mostly picked her.  Unless Villa Alegre was on. Because ¡Villa Alegre!

Still, she was pretty cute, so she usually reeled me in.

Smile nice for the camera and keep quiet about my bangs. You’ll have the same ones soon enough, missy.

She was usually game for whatever I wanted to do. For example, if I wanted to play barber shop and I needed a model …

I warned you, didn’t I? Listen, I wasn’t the one who thought battery-powered Snoopy scissors were a good gift idea for a kid.

Or, if I wanted to play hours of kickball in Grandma and Grandpa’s backyard.

It grew back. Sort of.

Eventually we were like peanut butter & jelly, a Caramello and milk, an Egg McMuffin with a side of syrup …

Aaaaaaand … there you have it. Exact same bangs, right down to the part. I think you should definitely sport that yellow yarn necklace more often. It’s a true statement piece.

We shared a lot of adventures.  This photo is possibly emblematic of our respective roles in those adventures …

(I notice I have a vague choke-hold on you in a lot of our photos. Weird.  Also, Mom must’ve been REALLY bored, because these are the best Halloween costumes I think we ever had.)

I think this photo captures the boredom that gave birth to Sylvia and Cheryl. I’m pretty sure there are no two siblings on earth who made up better, more involved, more dramatic games than we did. It might be because we watched hours of General Hospital and The Edge of Night when no one was looking. Just a guess.

Oh really, Sylvia? Well, my mother is the PRESIDENT of the company, so we’ll just see about THAT! Ha, ha, ha, ha, Cheryl! My mother OWNS the company! (Also, let’s just marvel for a second at how small and somewhat tan we were …)

My sister frequently shared the misery of the unfortunate fashion choices of some of the adults in our lives who shall remained unnamed here but who know damn well who they are.  (Yes, MOM, I’m looking at YOU.)  I mean – really?  Someone should be punished for this. This photo likely captures the moment my sister birthed and subsequently mastered the face that says, “My mouth is smiling but my eyes are killing you with daggers. Stab. Stab. Stab.

What in the holy hell happened here? It’s like we got into a fist-fight with the remnants bin at JoAnn’s Fabrics. I can’t even …

Of course, turnabout isn’t just fair play in sisterhood, it’s a prerequisite to a lot of other stuff.  For example, if you cut off all your sister’s hair, you should expect her to wake you frequently at 6:30 a.m. on a Saturday to play Barbies.  Or marbles.  Or to make her breakfast.  This can result in thrilling discoveries (e.g., brown sugar and cinnamon rolled up inside Bisquick dough is freakin’ awesome) or slightly less thrilling discoveries (e.g., napkins can, in fact, catch on fire).

This is only fair, I guess.

This photo says:  “Yay! Barbies! Marbles! I knew you’d see it my way!!!” (It also says, “I’m gonna take a Sharpie to your mother-effin’ Barbie coloring book, biotch.”)

The next time either of us thinks we’d look better with bangs, let’s please look at this photo.

Sisterhood also means putting up with a special brand of crazy core meltdown that occurs nowhere else in nature.  To the average person, this photo says, “Look at that sisterly love.”  To my sister and me it says, “I don’t care how much you hate your hair or your shirt or how fat you feel, get in the goddamned car and let’s go, or I’m telling everyone about that time I caught you picking your nose.”

It also says, “You better enjoy that sweater, you early-Christmas-present-opener-terrible-rewrapper-person.”

This photo says to the casual observer, “Awwww.  Sisterly love.” To my sister and me it says, “Thank god I didn’t let her pluck my eyebrows this time.”

Alright, seriously? Who would’ve predicted we’d grow up into this? 🙂

I jumped forward a whole lot of years – mostly because I need get some sleep before the next generation of 6:30 a.m.-get-up-and-let’s-play appears at my bedside and literally pries open my eyelids. (And people don’t believe in evolution. Pfft.) I think you get the general idea though.

Sylvia Chauveneux – The Next Generation. Except, her mother probably WILL own the company.

Happy Birthday, “Sylvia”

bday

I leave you with this one final thought:

Love always, your sister “Cheryl”

I Got Yer IEP Right Here: A Survivalist’s Manifesto

Recently, my husband and I went through a long IEP (that’s “individualized education plan”) process for our daughter. You’d think that, having done this a few times now, we would know what we were doing when it came to the IEP, right? Well, for reasons like stress, fear, worry, ignorance (but not the willful kind) and avoidance, it took us a (long) while before the light bulb in the attic finally flipped on. It also took the advice of some wonderful, giving souls who had walked in our shoes once, too. And, I promised each one of those wonderful souls we would pay their good deeds forward. So, here it is: Things You Should Know (and DO) Before Your Student’s IEP Meeting.

Education

Educate Yourself

The IEP process is daunting to parents and caregivers for lots of reasons, but two big ones stand out for me. The first is that the IEP process is psuedo-legal. There are a lot of legal rules for what can and cannot be done to create, implement and change a student’s IEP. It is very important for you to know these rules. Make sure the school district provides you with the required IEP procedural safeguards for parents, then read it! But, don’t rely solely on district resources. Consult other reliable, parent or student-focused resources as well. I recommend the advocacy series of books written by Pam and Peter Wright. A student has certain rights, parents/caregivers have certain rights and school districts have certain rights. Every IEP team member also has obligations. Make it your business to know what those are.

The IEP process is daunting also because it involves making decisions about a student’s educational needs. If your student is newly diagnosed with a condition necessitating special education or learning accommodations, you may still be orienting yourself emotionally and intellectually. When IEP team members start talking about “generalizing” skills to the “mainstream” curriculum, using “reinforcers” to motivate performance, the “common core standards,” or providing a “slant board” for writing to assess “visual acuity,” this new, important-sounding vocabulary may reinforce feelings of inadequacy AND give the speakers an aura of trustworthy expertise. Don’t let this one-two punch take you down for the count or lull you into a false sense of reliance. There are many, many reliable resources out there — resources that don’t require a degree in cognitive psychology to read — that can help you become conversant in the vocabulary of special education and be an effective advocate for your child.

Get your ducks in a row!

Plan Ahead

Ideally, a student’s IEP should be the product of a collaborative effort by the IEP team members. But, too often, a school-side team member hands the parent/caregiver-side team members the proposed IEP – already drafted and right before (or even at) the meeting. That doesn’t launch the IEP meeting on a collaborative note. I can’t say there aren’t circumstances where this is done deliberately. My experience, though, has been that a late-delivered IEP draft is the product of a lack of resources (read: only 24 hours in a day and too many IEP meeting clustered together). So be proactive and plan ahead. Tell your student’s classroom teacher that you want to help draft the proposed IEP, and set a meeting date to do that a couple of weeks before the IEP meeting. Come to this collaboration meeting prepared with a list of the things you think your student is doing well and things you’d like to see him/her work on. Then roll up your sleeves, open your mind and get to work. Be prepared to have divergent experiences when it comes to your student – you and the classroom teacher each see your student in a different environment for a good deal of time most days. This is also a very good opportunity for you to see and ask questions about the data your student’s classroom teacher, paraprofessionals and therapists collect over the year to determine your child’s present levels of performance. The data should objectively support the classroom teacher’s goal assessments, so it’s a good double-check against biases (good or bad / yours or the teacher’s)

Get the WHOLE PIE!

Oooooh. Whole IEP. I thought you said whole PIE. My bad.

Care About the WHOLE IEP, Not Just the Services Part

For the first two years our daughter was in special education, my husband and I worried only about the part of her IEP that listed where she would be placed and what type of services or accommodations she would receive (e.g., self-contained classroom, speech therapy, occupational therapy, etc.) – the FAPE part. (That’s free, appropriate public education. Welcome to the land of alphabet soup …)

The “Present Levels of Educational Performance” (or some such variation) and actual goals/objectives section of the IEP barely registered with us. We figured that as long as our daughter had the services she needed, we’d leave the implementation to the professionals. This year, though, we knew our meeting wasn’t going to be about our daughter’s services, because those weren’t going to change. So, we finally sat down to really read the goals in her IEP. Imagine my horror when we realized we had it all WRONG. FAPE is important, but the most important of part of the IEP is the assessment of your student’s present levels of academic and functional performance, because that assessment determines the goals, and the goals (more specifically, the benchmarks for progress toward goals) determine the services.

With that wake-up call and the profoundly important support of my fellow IEP-meeting survivalists, here’s my best advice for scaling Mount IEP:

  • Read and scrutinize the Present Levels of Educational Performance (PLOEP) section. Identify each skill described (good or bad) in the PLOEP, and write it in a separate line of notebook paper or type it into a line on a spreadsheet. When we did our daughter’s list, we typed progress in green and not-so-much progress or regressions in red. Then, analyze the list to determine whether it paints an accurate picture of where you believe your student’s educational performance is. (Trust me, you are absolutely qualified to do this.) if there are things missing, add them. If you disagree with parts, highlight those for discussion. If your student is old enough and capable / interested, get his/her feedback, too, and incorporate it. The abilities and skills identified in this section of the IEP are the foundation on which the goals are built and the services or accommodations needed to meet those goals determined. It is the first most-important part of the IEP. If the entire IEP team is not in agreement on the PLOEP, you cannot move forward. So, don’t stop until the whole team green-lights this section.
  • Read the Goals and Cross-Check against PLOEP, SMART, Strangers and Dead Men.
    • PLOEP – Review the list of abilities and limitations the team agreed on in the PLOEP. Then draft or double-check that there is a goal in your student’s IEP to address each area of need. If the abilities your student demonstrates are improving but still not at grade level, is there a new goal that challenges your student to reach a little higher? If your student is missing an important functional skill, is there a goal to address it? There must be a goal to address EVERY area of need. For some students, that may mean 2 goals. For others, that means 32 goals. There is NO rule regarding how many goals an IEP requires except that the goals must address every area of need.
    • SMART, Strangers and Dead Men. Okay, not real strangers and dead men. First, goals should be SMART. Yes, they should be smart as in a good idea. But, SMART is an acronym for specific, measurable, action-oriented, realistic and time-limited. A good goal should meet each of these criteria. My husband and I created this chart to assess our daughter’s proposed IEP goals (or the ones we offered to the IEP team as alternative goals). The chart explains what each of the SMART criteria means:

SMART Goal Worksheet

    • The chart also explains the Stranger Test, the Dead Man’s Test the Relation Back Test and the Educational Progress Tests. Any of these will help you determine whether a proposed goal is written clearly enough for ANYONE to follow it. (Except the dead guy. If the dead guy can meet the goal, no bueno.) Don’t underestimate the importance of this. Turnover for paraprofessional staff in special education classrooms is high, and unexpected events happen. Last year, our daughter’s classroom teacher was in a terrible auto accident that kept her out for a month. You want to be sure that the substitute (or substitutes) can read and immediately understand how to implement your student’s IEP. A month is a very long time when your student’s been around for only 48 of them. For a great primer on how to write meaningful, clear, SMART IEP goals, I recommend Barbara D. Bateman and Cynthia M. Herr’s book, Writing Measurable IEP Goals and Objectives.
  • Determine Services based on the Goals. Once the team agrees on the goals, the services and accommodations nearly select themselves. Still, there may be accommodations or interventions your student needs beyond what is specifically identified in a goal. When looking at the goals, ask yourself what accommodation would make it more likely your student will accomplish this goal. For us, this was one of the more difficult aspects of the IEP, because we didn’t really know what was available. Call on every resource you have: your pediatrician, your outside therapists, your Regional Center case manager, other parents, social service agencies in your area, the Internet (cautiously), the bookstore or library. Think about the types of assistance you provide to your student at home and how that might be incorporated into the classroom environment. I found two books especially helpful: School Success for Kids with Autism by Dr. Andrew L. Egel, Dr. Katherine C. Holman and Dr. Christine H. Barthold and Understanding Motor Skills in Children with Dyspraxia, ADHD, Autism & Other Learning Disabilities by Lisa A. Kurtz. (P.S. If you’re in the bookstore, check the children’s book section for books such as these. Last place I would’ve looked … 🙂 )

Confidence is holding up an imaginary wall with your shoulder while wearing pantyhose.

Don’t Be Afraid

It’s an unfortunate reality of the IEP system that it’s designed more to be antagonistic than to be collaborative. But, it is truly meant to be a project for the entire IEP team. YOU can make that happen.

  1. Make nice. Make a point to learn something about your student’s teacher, and let your actions show him/her you remember it. Did he mention a summer trip to India? Pick up a paperback travel guide and give it as a “just because” gift. Did she mention orange as her favorite color? Have your student make a special project and frame it in orange-painted popsicle sticks. You get the idea. Send a message that says, I value you as a person and teammate.
  2. Communicate early and often. Nothing is harder than getting through an IEP meeting with a room full of strangers, because you are forced to talk about emotionally charged issues. Don’t let this happen. Collect email addresses, telephone numbers and office hours information for all the members of your student’s IEP team – then USE THEM. If your student has a communication folder (s/he should!), read the notes that come home and RESPOND to them, even if it’s just to say “thank you.” Ask for advice. For a while, our daughter was “chipmunking” her food in her checks. I wrote her OT a note asking for her thoughts. She was thrilled to respond to me, and she had some great advice. Send a message that says, I value the experience you bring to this team.
  3. Assert yourself, but keep an open mind. Collaboration means there are not “sides” in an IEP meeting. As soon as you start to view the IEP meeting as a win/lose or us-versus-them proposition, it doesn’t matter how you score the meeting results – your student loses.. Without collaboration, your student doesn’t benefit from group’s collective wisdom on how to create the best environment for access to educational and functional skills. My husband and I went into our daughter’s last IEP meeting in agreement that we would demand and get a one-to-one aide for her, because we believed she needed one. We didn’t didn’t get one, though — not because we “lost” the argument — but because after two hours of discussion, we had a much better understanding of why our daughter was experiencing classroom anxiety, and we realized an aide might actually make it worse. If we hadn’t been willing to listen, we may have pushed hard for something believing it to be right for all the wrong reasons.
  4. Don’t judge based on a first (or even second) encounter. You may not realize how often a teacher encounters a parent/caregiver who is very angry and embarrassed by his/her student’s need for accommodation. Remember that a teacher’s seemingly callous or cavalier initial approach to you in fact may be apprehension. Some teachers are really open and relaxed around kids; not so much around adults. Give him/her the benefit of the doubt until you get to know one another. Also, pick your spots. Don’t spring involved questions or start what should be a confidential conversation with your student’s teacher while she’s trying to corral the kids onto busses and can’t give you her undivided or personal attention. And don’t sandbag – as soon as you feel like something merits discussion, discuss it. Don’t hold on to “little” things until you have so many you just unload. Give team members a chance to address your concerns before you assign fault. By the same token, be prepared to swallow just a little pride when it comes to your student. Nobody is perfect. (Except my kid. She’s totally perfect. *ahem*)
  5. Bring a comfort object and a support person. You thought comfort objects were only for our kiddos? Nope. When I go to my daughter’s IEP meetings, I bring coffee in a mug my older son made for me many years ago. It helps me visualize how the IEP meeting would go if we held it around my dining room table instead of around a U-shaped table outfitted with chairs about 10 sizes too small for grown people. That mindset helps me feel less like arguing and a lot more like listening — after all, that’s what I do at my dining room table over coffee. You may also bring anyone you’d like to an IEP meeting to act as a support person or an advocate for you. I highly recommend this. Even if your IEP meetings go smoothly, a trusted friend can take detailed notes for you during the meeting so you can give the team members your full attention. And, even if your student can’t really participate, bring him/her to the meeting. At one recent meeting, I brought my daughter due to lack of child care, but having her in the room really kept us on our best behavior, because her presence was a constant reminder that we were there for the best possible reason and with the same ultimate goal: her success!
  6. Listen to your instincts. There are a lot of experts in the room during an IEP meeting, and that includes YOU. YOU are an expert about your child. So, if you’ve tried everything you can to set the tone for a successful, collaborative meeting but the process breaks down (or never really gets off the ground), call a time-out. Take a 15-minute break or a 15-day break. You never have to sign an IEP with which you do not agree, and you can leave the meeting at any time. It took FOUR separate meetings before our daughter’s IEP team finally reached consensus on her goals, and there was definitely some butthurt along the way. But, at the end, I believe our daughter’s classroom teacher, her speech therapist, her occupational therapist, and the principal shared our feeling of an enormous sense of accomplishment. We all feel invested in her success now, and we will all feel a lot less defensive if her next round of assessments don’t show as much progress as we’d like. It’s called buy-in, and its value cannot be underestimated. If you can’t get buy-in from where things sit at the moment, take a break, come back with a fresh perspective and try again.

I’m sure there are other things I’m not mentioning that I should. So, here’s a list of other blogs you might want to visit for more on the IEP process:

IEP Season, at Anybody Want a Peanut?

Ways to make your next IEP awesome!, at Mostly True Stuff (when you need a little comic relief from IEP season … and you will)

Are you new to autism? and My child needs an IEP, at Yeah. Good Times.

Pretty much anything ever written over at snagglebox.

IEP without Tears, at Pancakes Gone Awry

One Inch Closer, at Both Hands and a Flashlight

Integration – Why is it needed, and why is it so hard?, at Autism from a Father’s Point of View

The M-word, at Autism and Oughtisms (the m-word being “mainstreaming”)

Dear School District: My Son is Not Just Another Brick in the Wall, at The Connor Chronicles

Flashback Friday, at This Side of Typical (lots and lots of fun new vocabulary!)

What are IEPs made of?, at Maternal Instincts

I know there are more, and I will try to add to this list as I locate them. In the meantime, keep your head up. And, remember: just like every student is unique, so too are IEP meetings. Take every story of failure and success with a grain of salt. You will learn to cull from them the cautious optimism that will get you through each IEP season. At least that’s what I keep telling myself. 😉

It Takes a Village and ALL the Villagers, too.

When my son was born, I was the first of my friends to have a child.  I spent a lot of time reading books about parenting, because it is my nature to research the crap out of stuff.  But, there are a lot of details the books don’t cover.  So, when Nate was about a week old, and I took him on his first shopping trip to Target, I called a girlfriend to come with me.  I had no idea how I was going to carry him in his car seat and push the shopping cart.  My girlfriend, being childless, thought helping me sounded like a great idea, because – yeah, how are you going to handle the cart and carrier by yourself?!? So, there we went, wandering through Target, Nate’s auntie dutifully carrying Nate, shielding him from all potential harm, while I pushed the shopping cart.

If you’ve cared for an infant, you’re laughing at me now.  And, in retrospect, it is kind of funny.  But, you know what saved me from my ignorance about how car seats actually fit into and lock onto shopping carts?  Another mom.  One afternoon, I was struggling to manage Nate in the car carrier and a cart at the grocery store when a woman cautiously approached me.  She apologized for “intruding” but said it looked to her like I was having a hard time, and she asked if I knew the car carrier would lock onto the cart.  In my desperation and surprise, I handed this complete stranger my new baby and let her show me how to do it.  And then I cried and hugged her.  She didn’t laugh at me.  She didn’t make fun of me.  She didn’t think I was a terrible parent or an awful person.  She didn’t suggest that I wasn’t qualified to have a child or that I was abusing my son with my ignorance.  All she saw was a new mom struggling with the figurative weight of her world and an opportunity to lighten the load.  Maybe she even saw a chance to pay forward the help she received.

So, when the roles in my life reversed, and I had a child on the verge of becoming a young man while some of my friends and family were birthing or adopting their own kids, I fielded a lot of questions and cautiously offered advice.  Not everyone took my advice.  Some made decisions for their kids that I wouldn’t have made for mine.  Funny enough, we’re still friends and family.  These people even leave me alone with their children, and I leave them sometimes with mine.  Because – at the end of the day – we all have one thing in common:  a deep and unconditional love for our kids, no matter how they get from uterus to adulthood.

If I learned anything from my experience raising Nate, it’s that raising a child by yourself is not just hard – it’s impossible.  There are no instructions, there is no user’s manual, there’s no troubleshooting guide or index.  When you leave the hospital with that brand new life, the hospital will make sure you installed your car seat right.  The rest is completely on you.  It is – to put it mildly – overwhelming.  Because of that, I asked people I trusted for advice.  I asked people I trusted to pitch in.  I asked for help.  Why?  Well – try as I might – I couldn’t be in two places at once, I didn’t have eyes in the back of my head, I had only two hands when I needed three (or four), and I did actually need some sleep to remain a relatively sane person.  Unless you can simultaneously sleep, shower, and prevent a toddler from coloring on your walls while eating a house plant, it will, in fact, take a village to raise your child.  (Also, call me.)

As many of my readers know, my daughter is autistic.  Sometimes, I write about my experiences as a parent of an autistic child.  When I write about my experiences, I’m motivated by two things:  receiving advice from others and sharing so that others can benefit by trying something that worked or avoiding something that didn’t work.  These are the exact things that motivated me to seek advice about or help raising and caring for Nate.  And, I feel the same compulsion to pay forward the great advice or lessons I learned along the way.  The only variation between the story of raising Nate and the story of raising Helene is the degree of challenge.  And, yes, raising kids is challenging.  There’s nothing wrong with saying that, and it doesn’t mean I don’t love my children.  Marriage is challenging – especially the sharing a bathroom part – but I love my husband.  “Challenging” is not a euphemism for “I hate it/him/her/them!”  The word actually means (among other things) “invitingly provocative.”

The varied reactions people have to the statement “raising kids is challenging,” exemplifies the lightning rod that is child rearing advice.  Folks tend to have pretty strong opinions about what’s “wrong” or “right” when it comes to child rearing.  In the abstract, this makes sense to me.  As I pointed out earlier, the kiddos do not come with instructions — not even those crazy IKEA drawings.  Opinions will vary far and wide.

With isolated exceptions (are you mom enough?!), I’ve never experienced such outright hostility toward and among parents than I’ve seen within the autism community.  It feels to me as though there is a growing movement among people who identify as or with “autism self-advocates” to silence parents of autistics, and I truly don’t understand why.  I’ve heard these proffered explanations:

  • Neurotypical parents are privileged and, therefore, should not complain about raising an autistic child who is not similarly privileged.
    • It is true – as far as I know – that I am neurotypical and my daughter is not.  But does that make me “privileged”? One of the chief arguments I’ve read advanced by autistic self-advocates is that autism is not a “disorder” but an innate part of the person’s being, like a personality trait.  The self-advocate embraces her autism.  Does not then the assertion that being neurotypical is a privilege contradict the assertion that autism is not a disorder?  I’m not asking facetiously.  I’m truly trying to reconcile these arguments, and that does not seem possible to me.  “Privilege” connotes a special right or advantage that others do not have.  If the autistic self-advocate rejects neurotypicality, how is it a “privilege”?
  • There are “too many” parent resources out there, and those voices are drowning out autistic voices.
    • I don’t understand this at all.  I’m pretty sure the Internet is big enough for us all.  I’ve yet to come across a parent blogger who advocates, encourages, condones or otherwise expresses a desire to silence autistic voices.  Yet, I’ve encountered several parent bloggers who actively work to silence other parents in some very petty, juvenile and counter-productive ways.  As a parent sharing my experiences, I’m trying to amplify the conversation about autism to increase awareness, acceptance, resources, and inclusion so that those things might be my daughter’s reality when she is old enough to start making decisions for herself about education, relationships, work and self-care.
  • A neurotypical parent cannot understand an autistic person or see life from his/her point of view; therefore, anything the parent says is inauthentic.
    • If I wrote a blog about what it feels like to be autistic, that would certainly be inauthentic.  I can form an educated guess, having talked to autistic adults, but I’ve not experienced and cannot experience it first-hand.  But, I don’t write a blog about what it’s like to be autistic.  I write a blog about being the parent of an autistic.  More to the point, I write a blog that’s sometimes about being Helene’s mom.  And, you know what?  No one can tell me I’m wrong about that, because I am the only person in the world who is Helene’s mom. That’s a biological fact, Jack.
  • A neurotypical parent who “complains” about raising an autistic person does not love that person and is actually “abusing” him or her.
    • Do parent bloggers “complain” about raising kids?  That’s probably a fair perception of some blog posts, perhaps even some of my own posts.  It’s hard to be excited and upbeat about negotiating a child’s public meltdowns, attending IEP meetings that are a constant battle of resources and personalities, staying on top of therapy providers who don’t return phone calls or show up on time, losing or purposefully jettisoning “friends” who just do not get it, feeling like you never know enough or do enough, and balancing a job that earns you enough money to afford insurance coverage and therapy co-pays while still maintaining some degree of presence at home for your kids – autistic or otherwise.  So, if I occasionally write a blog post that portrays my life as a mom as less than sunshine and roses, that’s a comment on my life.  It is not a statement about my feelings for my children.  I mean – for the love of Target gift cards and baby wipes – who would volunteer to become a parent (special needs flavored or otherwise) if there wasn’t a huge reward for your effort?  Scraping poop out from underneath my daughter’s fingernails is a very small price to pay for the sound of her voice saying, “I love you,” or the feel of her hand holding mine of her own volition.

So, here it is.  I am an unapologetic neurotypical mom of two great kids, one of whom happens to be autistic.  I write about my experiences as their mom in the various contexts of my life.  If what I write offers you some advice you can use, some insight you value, a laugh you need, or a shoulder to cry upon – great.  If you have constructive words of wisdom to share about your own experiences — as a mom, as an autistic person, as someone who just wants to help, I want to hear from you.  In case I wasn’t clear:  I WANT TO HEAR FROM YOU!  

If you cannot relate to my experience or have nothing helpful to say because you aren’t neurotypical, or you’re not a mom, or you’re not a woman, or you’re not a wife, or you’re not a lawyer, or you’re not one-quarter Greek and a potpourri of fractions of something else, or you have bad grammar, or you don’t like coffee, or you can’t stand people who actually value reason and common sense, or you think it’s okay to tell someone how she should feel, please go read a different blog.  That choice will be better for us both in the long run.  Why?  Because no matter who you are or what group you identify with, you and I have something very important in common:  a need for respect.  I respect the authenticity of the voices that speak from experience without dictating to others what his or her experience ought to be.  In turn, I speak from my experience, which is equally deserving of respect.  If we cannot find common ground there, I wish you well on your journeys elsewhere.

 

Has It Really Been a Year? Happy Birthday, ProfMomEsq!

It does not seem possible to me. At all. But, there it is.

Happy Blogging Anniversary

I started this blog on my 40th birthday as a present to myself, so I think my blog should have “birthdays” and not “anniversaries.”  I mean, it’s not like my blog and I are dating.  It sprang forth from my soul!  (Or, at least, my Mac.)  So, Happy Birthday to my blog!

[INSERT YouTube video of (a) The Beatles singing You Say It’s Your Birthday; (b) 50 Cent *ahem* singing In Da Club; or (c) some furry looking animal creature singing one or the other of those songs in a weird, squeaky voice while popping out of a cake.  You decide.  They block my shit at work …]

When ProfMomEsq was born, I had no idea where I’d go with it, or where it might take me. Frankly, I was thrilled I came up with a blog name.  Do you know how HARD that is?  It’s really, really, really damn hard.  It might’ve been harder than naming my kids.  And can I just tell you how pissed off I was when I went to set up a YouTube account for the blog and someone ALREADY HAD MY BLOG NAME as her user name?!?!  There is no freakin’ way someone else thought of that.  None.  Zero. Zip. Nada.  *glares at audience*

Truly, I expected to spend a lot of time talking to myself here.  I figured I could just barf up whatever word vomit I had in the pit of my stomach, and it would sit here in this little corner of the Internet, collecting dust bunnies and supporting spider webs (ha!) and yellowing a bit at the edges.  I had not even the first inkling of the amazing, funny, smart, wonderful people I would meet each time I pushed the magical button.

Defcon 5! Defcon 5!Screen Shot 2013-02-06 at 3.55.32 PM

I think it’s safe to say that the last 365 days truly changed my life.  I accomplished much more than I dared hope.

71 posts written

32,282 views (and 8,199 of those came in one day!)

924 comments

Most frequent search terms: “garden gnome” and “flipping off.”  (Right.  I don’t know either. But, you people have issues.)

Second most frequent:  Hobbit and Lord of the Rings stuff.  Now, I KNOW what this is about, and all you kids trying to use my blog to do your English homework, GET OFF MY LAWN!  Also, go hug your English teachers for assigning that shit, because s/he’s much cooler than mine ever were. And for fuck’s sake, READ IT!

204 people who think I’m worth following around.  (Right.  I don’t know either. Did I mention you people have issues?)

One post Freshly Pressed.  (Thanks, WordPress!)

Some awards. (One of which I shamefully have not blogged about yet.  Sorry, Joy at I Can Say Mama!)

Most viewed:  this one.

Most comments:  this one.

My favorite post of the year:  this one.

Writing is a solitary endeavor, but no one blogs alone. So, this seems like a really good time to say, “Thank you.” Thank you to everyone who stopped by for a read, introduced him/her/itself, left a comment, linked back or helped me pimp this sucker.  Thank you to my adoring husband, who proofread and approved most of my posts.  (But, the typos are all mine – don’t blame him.)  Thank you to my beautiful daughter, who is the frequent and involuntary subject of many of my posts but whose life I gleefully, proudly and lovingly share.  Thank you to my son for being the background music for many of my writing sessions and for not being utterly embarrassed by me even though I’m a dorky mom who says “yo” a lot even though it’s not cool.  Yo.  Thank you to the rest of my family and to my friends for your support of this project in ways big and small.  I love how much more connected this makes us … in a slightly ironic way.  😉

I’d like to especially thank the people who – wittingly or unwittingly – helped me get started in the blogosphere and kept me going:

  • Heather at Between the Covers – you are my most regular commenter and always quick with a RT.  Thank you.  I’m so happy to know you. My bookshelves are all the better for it.  😉
  • sj at Snobbery – thanks to you, I have some nifty pictures on my blog and lots of new fun tech toys, like Jing and Goodreads and Spotify and Storify. You introduced me to some great people through the LOTR read-along, too!  Thank you for being nice to an old lady.
  • George Kinnard at Coalescence – I don’t know how you found me, but you did, and you offered me some wonderful words of wisdom and support for which I am terribly grateful.
  • Rose at Love Many, Trust Few – my fellow autism-mom halfway across the world. I’m still reading along with you, even though I’m not as good about the commenting as I was.
  • Amy at Lucy’s Football – I still cannot believe you blog every day.  You were certainly an early inspiration for me!
  • Jillsmo at Yeah. Good Times. – you are the reason I know that the people in my computer are (sometimes) *real* people. You also were the catalyst for meeting so many of the awesome people I now know.  You also helped understand that IRL friends are not necessarily from Ireland.  I ❤ you.
  • Jim at Just a ‘Lil Blog – mostly because you introduced me to Lexi at Mostly True Stuff, but also because you’re a pretty cool dude, no matter what Lexi says. That, and you wrote one of the funniest blog posts I’ve ever read.  (HINT:  clam/shazam!)
  • Elizabeth at Muse~ings – for helping me keep my chin up by agreeing to my New Year’s Eve “Jar of Success” blog project. I can’t wait to open our jars!

Finally, I want to thank an extraordinary group of mostly women and a few very gullible select men who write blogs for the autism parenting community.  You know who you are, but I hope you also know I think you are all incredible, remarkable, inspiring, marvelous, ridiculously funny people.  And you all smell suspiciously of bacon.  I’m hugging you all now, and you feel weirdly boxy and kind of cold.  Also, why do you keep beeping like that?

Happy First Birthday to ProfMomEsq.  YOU – yes YOU (Quit looking behind you. There’s no one there, and people are staring.) – are the best birthday gift I could receive.  Let’s see if we can make it another year, no?  Word!