She’s So Girly

My grandmother worked for a toy store when I was little, and I benefitted from whatever she brought home.  Perhaps she planned it, perhaps not, but my toys were not gender-specific.  There were as many Tonka trucks as dolls.  I had Lincoln Logs, Bristle Blocks, Lego bricks, and a whiffle bat and ball.  I had a bright red and blue Big Wheel with a hand brake.  My Weebles wobbled, but they did not fall down … unless I deliberately pushed them out of their tree house.  I had Play Doh, paints and crayons.  I had a ridiculous number of Garfield coloring books and stickers.  I made mud pies, played football, rode a BMX bike, and built forts.  I don’t remember hearing “girls don’t do that,” “girls don’t play with that” or anything particularly gender-determinate from the influential adults in my life.  It may have been the coincidence of being the oldest grandchild.  It may have been the coincidence of growing up in a family where the men were outnumbered (out of 11 cousins only 3 are male).  Whatever the reason, I realized as an adult that my family – and particularly my grandmother – did me an enormous favor, because I did not grow up viewing myself as inferior to boys or men.  In fact, up until I was about 13 years old, I sincerely believed I could and would become the President of the United States. As in – the thought did not occur to me that anyone would have a problem with a woman in that role.  We simply hadn’t found the right woman yet, and I would solve that.

Then, Geraldine Ferraro happened.  I was in eighth grade. I was smack in the middle of puberty.  I was a latchkey kid who watched a lot of television. Somehow, I ended up at a political rally for Walter Mondale at which Annie Potts (who starred in Designing Women at the time) spoke. Geraldine Ferraro spoke about things like equal pay, equal opportunity.  I think that is the point on my life’s timeline at which I can mark my first awareness that the road before me might be a little bumpier, a little windier or – possibly – altogether unpaved because of my gender.

There were many experiences between that time and when I became a parent 11 or 12 years later.  From the obvious – a restaurant manager who sent me up ladders to peek up my uniform’s skirt – to the latent – the English professor who subtly but uniformly dismissed female students’ interpretations of male poets.  I learned enough from those experiences to make a deliberate effort to not constantly remind my son of his gender with everything he looked at or touched.  If he wanted to paint his nails, I let him.  When he wanted a doll, I got him one.  When he wanted a PowerPuff Girls throw blanket, I made it happen.

In first grade, he drew a picture of me and of Father Bear.  Father Bear had a long, pole-like thing coming out of his head. I had a long, pole-looking thing come out of my … um … yeah. When asked what Father Bear’s pole was, he told us, “That’s his shocker thingy.”  When asked about mine, he said, “Those are Mommy’s peanuts.”  Horror and pride make strange bedfellows, I say.

Then there came a day, in the middle of Kmart, when my nine-year-old son announced his desire to deck out his entire bedroom in PowerPuff Girls. I balked. He stood before me, eyes and body in pleading posture, with all the gender obliviousness I so longed for him to have. He looked at the chaos of Pepto Bismol-pink and saw nothing but his favorite cartoon. I stood there blinded by the silent movie playing in my head of an endless stream of third-grade boys pointing, laughing and mocking my sweet and loving dude. I couldn’t shake it. I couldn’t find the bravery to say yes. Instead, I said we couldn’t afford the new bedding right then. As it turned out, his interest in PowerPuff Girls morphed into an obsession with Ben 10 (and morphed again and again and again and …), so the topic of the bedding was never revisited. I still wonder, though, whether I would’ve found the fortitude to say yes had he insisted.

Twenty two years after Geraldine Ferraro initiated me into the gender equality wars, I became the mother of a girl. My career made me painfully aware of things like glass ceilings, mommy tracks and boys’ clubs. So, I painted her room butter yellow, slate blue and mint green. I made everyone promise not to buy her pink stuff. There was not a princess anywhere in sight. Her room was filled with stuffed frogs but no dolls. I took her to her first baseball game when she was two months old. She is named after her great-grandmothers, but I loved her name especially because it is both feminine (Helene) and masculine (Len or Leni). She had enough green, blue and orange clothing that at least once a week, someone would say, “Oh, what a beautiful little boy.” An elderly woman did this to her once in the grocery store. When I corrected the woman, she said to me, “Well you dressed her in blue!” I suppose the fact that she was wearing a blue dress was just one detail too many …

Helene is seven now. Her second birthday cake was a %&$@)%^# princess. Her favorite color is  — wait for it — waaaaaaait for it — pink. Pink frosting, pink shoes, pink balloons, pink dishes. If pink is an option, she will pick the pink. She also loves to have her fingernails and toenails painted. (In fact, it was how we finally got her to let us trim her nails without screaming like we were trying to murder her.) She picks out her own polish.  Guess what color.  EVERY.  TIME. Oh, and it has glitter in it, which is fun. (By which I mean NOT AT ALL FUN.) She likes to wear faerie wings and often fancies herself a queen. (Last week, though, she was a king thankyouverymuch). She wants to be a flower and live in a forest when she grows up.  A PINK flower, dammit.

But, like her brother at her age, she doesn’t look at pink and see “girl.” She looks at pink and glitter and faerie wings as things that appeal to her aesthetic. It’s that simple.  And given the amount of time she spends trying to put those faerie wings on her brother, I feel confident saying this. (Aside: mad props to her brother, who rocks those faerie wings like a champ more often than not and has never ONCE said to her anything about boys not wearing them.) When I look at the toys strewn about our living room, there is really nothing about them that would let a stranger know whether a little boy or little girl lives here.  This pleases me because – particularly in the past couple years – Helene picks her own toys.

Yet, I question myself constantly. Am I swinging the pendulum too far the other way?  Isn’t the idea of equality not about making a girl more masculine (or less feminine) but simply about giving her the freedom to choose her own path, wherever that may lead?  Because, the truth is, I don’t care how feminine or masculine she is as an adult. I care only that she arrives at her destination of her own volition – of her own choosing – of her own heart. I want this for both of my children. Have careers, have families, have both, have neither … just be kind, be happy, be responsible, be caring and – above all – be yourself.  None of that is gender-specific.

Which brings me to yesterday. Yesterday, Helene had ABA therapy, and it was rough. She had a hard time transitioning into session. To help her, I offered to paint her fingernails as a distraction to ease her into the routine. She eagerly agreed, and we applied glittery hot pink enamel to her freshly manicured hands. Later, when the therapist was strategizing ways to help Helene with transition in the future, she remarked that Helene is “so girly.” I felt the hairs rise on the back of my neck and shot back, “No, she’s really NOT.”  What does “so girly” even mean?!  I’m not a scientist, but I’m reasonably certain – after years of diaper-changing – that Helene came with the standard-issue genitalia. Are there quantities of femaleness?

I took stock of the room – a Lego race car, primary-colored sorting boxes, plush Wonder Pets, Backyardigans, Doc McStuffins and Peppa Pig; dinosaur bowling – and I felt an overwhelming sadness at the reminder of how deeply our biases root into us. The elderly lady in the store who saw blue but not the dress. The therapist who sat amidst the sea of toys and saw only pink glitter nail polish. The me of ten years ago who saw only bullying and not just a favorite cartoon. I ached longingly for the comfort of the obliviousness of my first thirteen years. I wondered how long I preserved that oblivion for my oldest and how long I can for Helene. I took solace in the idea that the very literal way Helene sees the world as a result of autism might insulate her against that bias gaining a foothold in her psyche. Although she has a compelling need to categorize the world, she does it based on facts and not judgments, because that’s just her lens.  A very pink lens that has nothing to do with her gender and everything to do with a world that’s more fun with faerie wings and sparkly hands.

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Just Try

I can tell you about fifteen hours a week of therapy.

I can tell you about speech delays, sensory processing disorder, language processing disorder and social anxiety.

I can tell you about impaired motor skills and cognitive abilities impossible to assess.

But, that doesn’t really tell you anything about what it’s like to know Helene.  It tells you nothing of her personality, her sense of humor, her emotional intelligence or her potential.  It tells you nothing about what her autism is like.  It simply reduces her to sound bites and statistics.  Without a doubt, her life follows and will continue to follow a road less traveled and perhaps bearing greater obstacles.  But, she is not “lost” or “damaged” or “diseased” because of autism.  Before any other adjective, Helene is human.  She is love.  She is a daughter.  She is a sister.  She is a niece, cousin, granddaughter and friend. I don’t spend my days trying to “cure” her; I spend my days learning to understand her, trying to see the world through her eyes, and helping her navigate a choppy and uncertain sea.

Our autism is a seven-year-old girl wearing Hello Kitty pajamas who wants to be a flower and live in a forest when she grows up.   This is a little piece of her story.

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

The alarm chimes, and I search the nightstand for my phone with the palm of my hand, patting … patting … pat – …

The chiming stops when I tap the screen with as much vigor as I can muster at 6:30 am.  I greedily sink back into my nine-minute snooze, but a small, heat-seeking appendage jabs itself, toes first, into my calf.  Momentarily, I am disoriented.  Am I in an oven?  Is the house on fire?  Have I woken on the surface of the sun?  I launch the blankets off of me and suck up the cool air until I’m certain steam rises from my abdomen.  As my eyes adjust, I realize — nope — still in bed and house flame-free.  The sauna-like humidity comes from the four-foot long human furnace velcro-ed to my side.

Helene grumpily pulls the blankets back toward her and covers her eyes, blocking out the morning sunshine that glistens through the bedroom window.  The birds outside chirp away with an enthusiasm that makes me consider whether worms for breakfast is a sensible choice.  It is early, and I am tired; but, the instant gratitude engulfing me as I remember that it is summer and that Helene can continue to sleep propels me from bed and down to the coffee pot.  The protein bar I eat while waiting for said coffee causes me to ponder the worms again.

I typically wake next to a human who is considerably larger and scruffier (although probably not less … warm), but Papa was relegated to Helene’s bed last night, because her sleep didn’t deepen enough to move her from our bed to hers.  Helene never learned to fall asleep on her own, and that’s our doing.  Self-preservation caused us to let her fall asleep in our bed – sometimes after we fell asleep – and now that’s the routine. Mostly, it’s worked out. Except, you know, when it hasn’t.  Anyway, it’s not really bedtime that’s the problem.  It’s morning, which comes reallyfast when you don’t fall asleep before midnight.

Helene’s internal clock is not wired to accommodate Mama or Papa’s work schedule or a school schedule for that matter.  From birth she was a late riser and a night owl.  I was convinced she would be the opposite, because she was born at 5:30 a.m.  Apparently, though, she came out at that hour because she was ending her day not starting it.

All joking aside, if an alarm or an insistent parent wakes Helene before she’s ready to wake, the resulting sensory explosion is immediate, severe and spectacular.  We’re not talking the typical-kid whining about not wanting to get up or begging for “just a few more minutes.”  The blast radius for this unwelcome intrusion covers at least two blocks and three octaves of crying and frustration, hyperventilation, vomiting and a sincere worry that the neighbors will call Child Protective Services.  Even if Helene achieves a relative calm without falling back to sleep, what follows is an inability to function for the rest of the day and the trigger of a late-day napping cycle.  We win the battle to get Helene to school on Monday by 7:50 a.m. only to lose the war for the remainder of the week as Papa and I sleep in shifts and cook frozen pizza at 3:00 a.m. for the kid who thinks it’s dinnertime.

If, however, left to her organic sleep patterns, the result is drastically different.  I’m greeted with a, “Good morning, Mama,” and the remnants of whatever dialogue danced through the recesses of her grey matter before she crested her last REM cycle.  Some days, I even get a hug or a gentle pat on the cheek.

Today, Helene wakes a little after 9:00 a.m.  She’s chatting away to herself.  Lately, she’s taken to singing the melody of a song she knows but changing the words to repeat a familiar situation.  Today’s song is a mash-up between something from The Backyardigans and a trip we took to the zoo a couple of weeks ago.  It’s as close as Helene will get to spontaneous (non-memorized) speech, and I’m enjoying it immensely.  I don’t really want to interrupt it, but neither do I feel like washing the sheets.

“Did you do Step 9?” I ask.  “Step 9” is “Go to the bathroom.”  About a year ago, we developed a bedtime routine that covers ten steps that carry us right on through to morning.

“You sure do,” Helene responds as she slides out of bed and wanders sleep-drunk toward the bathroom.  Helene was almost six before she finally worked out the body signals needed to successfully toilet.  She’s been a rock star at it since, but she will hold it until the bitter end.  There are a lot of possible culprits here.  One is that she just does not recognize the urge to go until it is URGENT.  Another might be a need for control; there is a lot about Helene’s daily being that is out of her control (such is the nature of being 7), but whether anything goes into or comes out of her body are two things that pretty much only she can dictate.  Another might be the intensity of her focus.  When she pays attention to something, she often does it to the exclusion of all else, including a bladder screaming, Evacuate! Evacuate! Evacuate!

When Helene reappears in the bedroom, she announces, “Step 10, please.”  “Step 10” = “Time for breakfast.”  She then collects her blankets and a beach bag filled with her “friends” – a collection of Ty Beanies:  Muno, Foofa, Toodee, Brobee and Plex from Yo Gabba Gabba and Pablo, Uniqua, Tasha, Austin and Tyrone from The Backyardigans.  She drags this mosaic of plush madness down the stairs to the living room, plops herself on the carpet and braces herself for the day.  Even during summer break, Helene has therapy six out of seven days a week – speech, OT or ABA.  Typically, today would be ABA therapy for four hours.  But, Helene’s therapist is not coming today, and we have other plans. We’ve been invited to a birthday party.

This doesn’t happen often, so we are excited – and a little nervous – about how this will go.  Birthday parties are one of those things that parents of typically developing children take for granted as part of growing up.  But for autistic children, parties can be fraught with challenges.  If autism presents – as it does in Helene’s case – with sensory sensitivities to noise and light, a crowded room full of the cacophony of 10, 15, or 20 kids is not ideal.  Add to that the madness of places like Chuck E. Cheese or SuperFranks, and there’s a good chance we won’t even make it in the door.  But, this assumes Helene is invited to parties at all.  Helene spends most of her day in a special education classroom with kids who are also on the spectrum; like Helene, many of her peers don’t have birthday parties except for the quiet kind at home with friends and family who have realistic (and flexible) expectations.  Helene spends much less time in the general education environment, and given her limited verbal communication and her confusion by or fear of social situations not facilitated by an adult, she is especially challenged by making friends.  The older Helene gets, the more her “differences” from her peers become apparent, and the greater the obstacles.  We are so grateful that Helene’s school peers have never been unkind to her.  But, the reality is that Helene doesn’t quite know what to make of other kids and – at seven years old – they don’t quite know what to make of her either.  The confusion prevents relationships needed to foster things like birthday party invitations and play dates from developing, and we worry a lot about what that will mean for her later in life.

Today, though, there is an invitation, so on to Step 10.  Breakfast is the same every morning:  Gerber oatmeal blended with fruit puree.  Yes, that’s right.  My seven-year-old still eats baby food for breakfast.  I think there is an excellent chance she will eat this same breakfast at 27 and 77.  I ask you:  so what?  In fact, this was my first “so what” moment as the parent of an autistic child.  It’s a perfectly nutritious breakfast.  It’s the easiest thing ever to make.  It gives her daily practice using utensils.  She actually eats all of it.  And, frankly, the only reason  not to let her have this breakfast is because I’m worried about what other people might think about me as a parent for letting her have it.  Well, why should I?  Unless you’re coming over to make her breakfast every morning and navigate the consequences of that, I DON’T CARE, Judgy McJudgerson.  Except that I care enough to tell you we did try lots of other things – traditional oatmeal, eggs, cereal, pancakes, fruit, cold cuts, etc.  Ultimately, Helene adopted only two other breakfast foods:  hash browns and bacon.  (If her food aversions caused me doubt about her genetic relationship to me or to her father, the love of bacon and carbs quashed it right then.)

After breakfast, Helene busies herself on her iPad or the computer.  About two years ago, Helene stopped watching anything on television except baseball.  The upside of the baseball preoccupation is that Papa and I are perfectly willing not only to indulge but encourage this, because we are huge baseball fans ourselves.  The downside is that baseball broadcasts come with commercials that were conspicuously missing from some of Helene’s earlier channel choices.  Helene by and large communicates via “scripting” – a form of echolalia or repeated speech.  This means memorizing phrases (or entire monologues) then repeating them – often in the correct context.  Scripting helps Helene to communicate a need or want.  For example, I asked Helene one afternoon whether she was hungry.  She replied, “I’m famished.  ‘Famished’ means you are really, REALLY hungry!”  Thank you kindly, Endless Reader.  Frequently, though, scripting means we drive around town with an ad agency in the backseat.  As we pass the gas station:  “Chevron with Techron.  Care for your car.”  As we pass a pizza joint:  “Mountain Mike’s Pizza.  You’re worth it.”  As we pass a car dealer:  “Toyota.  Let’s go places!”  McDonald’s will be sad to know that “I’m lovin’ it!” never really caught on with Helene; she sticks with frenchfrieschickensapplesmilk as her slogan of choice for the Golden Arches.  I can say confidently that you just have not lived until you’ve strolled through the grocery store with a kid shouting, “He hits it deep!  He hits it long!  It’s … it’s … OUTTA HERE!”

After breakfast (which is practically lunch by the time we get it together), we head out for the birthday party.  Things go awry about two miles from the house.

Helene has an uncanny sense of direction.  She will tell you to turn left or right based on where we’ve told her we’re going, and she is almost always accurate.  Except today – today we’re going to a different place than she thought.  Of course, I didn’t and couldn’t know this, because she cannot tell me where she thought we were going.  This type of miscommunication happens to us often, because Helene does not deal in generalities.  I usually know better than to ask things like, “Do you want to go to the grocery store?”  because Helene will agree and think we’re going to Safeway.  I, however, mean we’re going to Sprouts.  When the car does not go to Safeway, we have big, big problems.

Today, I know my mistake nearly instantly.  I told her “birthday party,” but I should have told her the name of the place we were going.  I don’t know what place she associates with “birthday party,” but it was NOT in the direction the car pointed.  As we pass the turn she expects us to make, she starts to panic and yell.  To a casual listener, I know she sounds like a child having a temper tantrum.  I thought it myself until I knew better.  Years wiser, I can hear the panic in her voice, and I know that as she sits strapped in a car seat in a moving car, having no idea where she’s going, she feels trapped and – what I fear most – is that she feels betrayed.  All I can do is offer her assurances:  we’re going to a party; you like parties … the party is at the park; you can play … no school and no therapy, only fun.  Finally, I tell her that we are going just to try it.  If we get to the party and she doesn’t like it, we can leave.  And, I mean it.  I’ve learned that I have to offer her meaningful choices or she won’t trust me.  I encourage her over and over to find her calm and promise her it will be okay.

We arrive at the park, Helene’s panic reduced to a whimper but nonetheless hanging over her like a dark cloud.  Of course, the park is full of birds because – outside, yo.  Birds are Helene’s kryptonite.  They freak her the hell out.  We don’t entirely understand why, but the fear is real and powerful. Our best guess is that birds move suddenly and unpredictably, which Helene finds unnerving.  Her fear is strongest with black birds, like crows, but even little finches and hummingbirds can trigger her flight response.  Also, it’s a windy day, and Helene doesn’t like the way it feels on her face or sounds in her ears.  Still, we walk slowly into the park and find a seat on a bench.  I have a firm but gentle grip on her arm; she will bolt away from me if frightened enough and in her fear she will not think about dangers like cars, ledges, curbs or other injury hazards.

“You want house,” she implores me as I sit her on my lap.  Despite all the years of speech therapy, we cannot seem to shake the pronoun confusion that invades Helene’s speech.  I know what she means, though.  And I know she means it, because she’s giving me full, unblinking eye contact as she says it.

“I know,” I tell her, meeting her eyes and brushing her hair from her face.  The birthday boy’s mom hands Helene a cup of juice, which she takes.  I am grateful that, in this particular moment, the parent watching this unfold also has a child on the spectrum. I don’t have to explain any of what she’s seeing and if, in the next 30 seconds, we say our goodbyes and head back to the car, there will be complete understanding and no need for apologies.  This solidarity brings me a calm that helps me help Helene.  I’ve read the findings of some science-y types that autistics lack empathy.  Perhaps some.  My daughter is not one.  If anything, I find her feelings frequently extend from mine:  If I worry, she worries.  If I am sad, she is sad.  (Don’t get me wrong.  There are definitely crossed signals. Like the time she full-on kicked me in the shin then laughed when I dropped to the floor from the pain of the million-watt jolt of electricity she sent up my leg.)  Right now, as she’s sitting on my lap, I’m certain my calm is feeding hers.  Just try.

Helene sips the juice and watches two boys playing near us.  One of them squirts the other with silly string, and Helene giggles a little.  Given the opening, I offer:  “How about we sit here on the bench for a minute?  You can stay on my lap and finish your juice, then we can go.”  Helene doesn’t say anything to me, but she sips the juice again and makes no effort to get off my lap.  Just try. Then, suddenly, she’s off.  There is a basketball court below us, and she couldn’t resist its gravitational pull.  Eventually, she explored the cement slide (and took the road-rash burn it gave her on her arm in stride) and the swings.  She did her best to ignore the birds.  She made it about thirty minutes before announcing, “Time to go!”  Just try.

Living with autism is sometimes a challenge.  But, it is a life, and it is without a doubt a life worth living.  We live in slower motion.  We pay closer attention to detail.  We take less for granted and more in stride.  It is every day committing just to try.

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.

Spectrum Parenting Pitfalls: Wishing for “Normal”

Today, my friend @jillsmo of Yeah. Good Times. wrote a brave and thoughtful blog post that resonated with me.  I started to leave a comment on it, but my comment got too long.  (I know, right?)  So, I left her a quick note and came over here to say the rest.

*DEEP BREATH*

I sometimes wish Helene were “normal.”

*EXHALE*

When I wish for “normal,” what I mean is that I wish Helene could have the same sense of humor, the same loving disposition, the same sweet smile, the same strong will that she now has right now — without speech delays, motor skills deficits, sensitivity to noise and stimuli, obliviousness to or irritation by her peers, tremendous anxiety attacks that consume her,  a paradoxical need to hurt herself again (and again) after she feels pain, or the rollercoaster sleep schedule.

When I wish for “normal,” it is a short-hand way of saying I would gladly trade Helene’s doctor’s appointments, therapies, “social skills” classes, IEP teams, agency services, and rigid daily life for soccer games, dance classes, music lessons, the ability to travel and the freedom not only to have, but to enjoy, spontaneity and flexibility.

And, yes, I want these things as much for me and for our family as I do for Helene.  Why wouldn’t or – more to the point – shouldn’t I?

But, wishing for “normal” does not mean I wish Helene wasn’t autistic.  If someone handed me a pill tomorrow that would “cure” Helene’s autism, I would be simultaneously terrified to give it to her and to not.  How do I not magically remove her challenges if it is within my power to do so?  But, what if – what if – giving her fluent speech, gracious movement, regular sleep, a neurotypical response to pain, peer-aged social engagement or emotional stability, I simultaneously removed everything about Helene that makes up her personality – the very essence of what I love so much about her it hurts?

Why don’t I utter a desire for “normal” aloud?  Why do I get upset when other people say to me, “Don’t you wish your daughter was ‘normal’?”

When I don’t say it, it’s out of fear and guilt.

Baggage

I have two fears.  First, I am afraid for myself.  Second, I am afraid for the parents and children whose lives are touched by ASD.  I am afraid that if I express this thought out loud, people in the ASD community, who have very strong opinions about what is “right” or “wrong” when living as or with a person on the spectrum, will attack me.  I already feel so excluded and marginalized – on my own behalf and on my daughter’s – I don’t think I can take being rejected by the only community in which my daughter and I belong – objectively speaking, anyway.  Second, I am afraid that if I express this thought out loud, I inadvertently send the wrong message to parents and children touched by ASD.  My wish for “normal” is not a permanent state of mind for me.  It’s not what I desire when I throw a penny in a fountain or blow out birthday candles or even when I read articles on developments in treatment of ASD.  It is a recurring but fleeting thought that crosses my mind particularly when Helene is frustrated or hurt (physically or emotionally) by the challenges that life brings her.  It is the manifestation of desire that I think most parents have in response to the difficulties confronting their children – I want to make it better / easier / safer.

Now, the guilt.  My introduction to the autism spectrum community came with a barrage of messages about acceptance and advocacy:  accept your child for who she is, and never stop pushing for her acceptance in and by broader society.  These are good, important messages, because much of what I want for Helene will come from others understanding, accepting and integrating Helene into all aspects of society.  I believe that these are my responsibilities as part of parenting a child on the spectrum.  But, what I didn’t hear (or hear enough) about was how to address my own feelings about being a parent under these circumstances.  Intuitively, I know that I am entitled to have feelings about this – both positive and negative.  Being a parent is not a walk in the park under even the most idyllic of circumstances, because it inevitably involves the desire – or even the need – to control another human being.  Still, the message I heard more often than not was that anything other than total and complete acceptance of my role and my child was failure – as a mom, as an advocate, as a human.  So, when I find my mind wandering toward the forbidden wish that my daughter not face so many challenges and obstacles, I immediately feel shame.  I feel as though I’ve betrayed her.  And, I feel as though I betray the broader ASD community.

But, fear and guilt are not positive, healthy emotions.  Walking around with that darkness does not make me a better parent for Helene – or Nate.  It doesn’t make me a better member of this family.  Quite the opposite, it makes me less effective, less convincing, and less able, because fear and guilt diminish the psychic energy necessary to be the advocate I do need to be; those feelings undermine my ability to create a positive space for Helene both within and outside the ASD community.

In fact, when I read Jill’s blog post, I burst into tears, because I felt relieved.  I felt redeemed.  I felt successful.

Yessssssss.

Why?  Because, I happen to think Jill is a wonderful mother.  I think she is an outstanding advocate not only people on the spectrum but for their parents and caregivers.  And, because I respect her, hearing her say that she sometimes harbors the same feelings made the weight of all my bottled-up guilt and fear so much lighter.  It made me believe that I am not alone.  It made me believe that I’m not a bad parent.  Do you know how empowering that is?  Just think about that for a minute.  Whether you are NT or on the spectrum, what motivates you more toward success:  fear or positive reinforcement?  If you are on the spectrum, did you find your relationship with your parent(s) more productive when they were anxious and filled with fear and worry or when they were able to just be with you?

So, what’s with my double standard?  Why do I get upset when people ask me whether I wish Helene were ‘normal’?  The most basic explanation is that I know what I mean by ‘normal’; I don’t know what you mean.  That question is so very loaded by the vagueness of “normal” that I cannot possibly answer with a simple “yes” or “no.”

Hopelessly vague and ambiguous

That makes me defensive, especially when talking to someone I don’t know.  I feel like I have to explain and justify my daughter’s existence and my part in it.  If you ask me this over a cup of coffee, when I’ve invited you to talk to me about raising children, I will feel comfortable enough to tell you the answer is “yes” (if you mean to ask me whether I wish life brought Helene more rewards than challenges); the answer is “no” if you mean to ask whether I wish Helene was not autistic or whether I am ashamed of, embarrassed by or angry at my daughter for being anything that she is.  If you ask me this while she’s in the middle of a meltdown caused by too much sensory input or on her 55th rendition of “Itsy Bitsy Spider” to stave off the anxiety, I’m not going to take the time to make sense of ambiguities, I’m going immediately on the defensive, I will assume you mean “don’t you wish your life didn’t suck so bad,” and I will unleash my inner advocacy-mom-ninja. No, my life doesn’t suck, and neither does Helene’s, just because sometimes our lives are more frustrating than others’.

I AM A BESERKER NINJA! FEAR ME!

Remember me?  Yeah.

Which brings me back around to fear and guilt.  Do you know when people ask me the “normal” question the most often?  It’s not over coffee.  It’s not a question asked out of sympathy, empathy or even good will.  It’s asked more like an accusation, making me simultaneously wish that you perceived my daughter as “normal” and feel shame that I have, in fact, wished for “normal.”  It’s a horrible, confusing, depressing feeling, and instead of being able to reflect and answer that question in a way that would really advocate for Helene, I just lash out at the inquirer, which kind of proves his/her intended point.

So, I don’t say it.  You don’t say it.  It doesn’t get discussed.  Until people like Jill are brave enough to put it out there — to risk the disappointment and anger of vocal members of the community, to risk being misunderstood – for the sake of reaching the parents out there who need to talk about it so that we do a better job of taking care of ourselves and parenting our beautiful kids.

Thank you, Jill, for making me brave enough to post this.  Thank you to everyone brave enough to share in response.

Beserker Ninja: An Illustrated Guide to My (Lack of) Autism Parenting Skills

Crap.

I’ve been in a mood since last Wednesday after I left my therapist’s office. It looks like this:

No Umbrella ... ella ... ella ... ella

Why do I never have a fucking umbrella when I need one. Rhhhhhhiiiiaaaannnaaaa!!!

I’ve started – I don’t know – three different blog posts? But, I haven’t been able to finish any of them, because while the posts are about topics that matter to me, they aren’t really what’s been on my mind. I showed at least enough restraint not to delete them, because they’re probably worth finishing when I’m not such a Crabby Crabberson.

Little Black Cloud Syndrome happens to me in cycles. I hit what seems a sudden and unpredictable week that feels wholly unbearable. My bed feels too comfortable to exit, but not comfortable enough in which to sleep. My clothes feel like a straitjacket. Everyone’s voice is too loud, and people are annoying because – I don’t know – they breathe. The sun feels like someone is stabbing my retinas with a thousand needles. I’m starving, but nothing seems appetizing or tastes good. I’m tired but my body will not hold still. Concentrating on anything other than menial, repetitive tasks is OUT of the question. I just want to hide in my room with my laptop and a book. If Helene will “hide” with me – and she often will – all the better. (Except for the iPad volume control issue. Apple, if you’re listening, could we get on that please? Some kind of parental lock for the volume would be bananas amazing. Thanks.)

The last time Little Black Cloud Syndrome hit me, I knew for sure this wasn’t a PMS-y, hormonal thing. It was serious, and I needed to call my doctor.

(Aside: I have one of those doctors who thinks everything that’s wrong with me is stress or hormone related. For example,

Doctor: Well, yes, I see that you’ve been bitten by a rattlesnake. It probably sensed your stress. Let me refer you to Mental Health.

Me: Uh, I’m no doctor, but I think I actually need like an injection or something that’s the opposite of deadly poisonous venom?

Doctor: You’re right. You’re not a doctor. Here’s the number for Mental Health.

Or,

Doctor: This x-ray shows you’ve broken your hand. I’ll send you over to casting, but then you should probably have your thyroid tested.

Me: I broke my hand in a car accident, Dr. O. The other driver hit me. I was stopped.

Doctor: Well, you were probably gripping the steering wheel too tightly due to stress caused by hormonal imbalance.

Me: Yeah, there was “stress!” It was the stress of seeing the other guy coming at me in the rearview mirror at 50 miles per hour and having nowhere to go. I mean, call my ‘crazy,’ but I think that’s a pretty normal non-thyroid-y reaction to the circumstances.

Doctor: Mental illness is not a joking matter. Please take this order to the lab, Ms. A.

Me: That’s Professor A to you, Doctor O. Or, if you prefer, Counselor as in legal counselor. Not the touchy-feely shit you’re sending me down the hall for. FYI.

So, you can imagine the sick, I-told-you-so satisfaction he got out of me finally letting him refer me to Mental Health. He pointed at me with a big-ass grin on his face, dancing around the room, going “Uh-huh! That’s right! I’m the doctor! I’m the doctor! I’m the doctor!,” spiked his stethoscope and did a Tiger Woods-esque arm pump. Or maybe just the corner of his mouth curled up in the slightest of smug and self-satisfied smirks. Whatevs.

The day was moving along. I was properly caffeinated. I’d been adequately fed. As I exited the parking lot of a shopping center, however, my mood ring went from blue to black in less than the lifespan of an ice cube on hot asphalt in Georgia in the middle of July.

I know it is difficult to imagine, but my description of the relative locations of the parties involved would actually be worse than my drawing of a diagram. So, I’m going to draw a diagram. Now is not the time for complaining. First, you haven’t even seen it yet. Second, do you really want a beserker-ninja beat down?

I AM A BESERKER NINJA!  FEAR ME!

Yeah. I thought not.

Cool. So, here’s the diagram:

Scene Where Shit Was Lost (a/k/a Mall Parking Lot)

Okay. I’m driving along main artery of the parking lot. (Orangish-square with the “1” in it, above.) Bad Driver Lady (Orangish-yellow square clearly about to t-bone my car) runs her stop sign but manages to hit the brakes before she hits me. It’s cool. I’m not perfect behind the wheel by any means. (It’s true. This one time (not at band camp), a parking column actually jumped right into my car. It was some crazy shit, man. Did like $5,000 in damage. (And to this day, I wish I had an audio recording of my conversation with the GEICO adjuster.)) Any-who, I was just gonna let her roll on.

But.

BUT!

Bad Driver Lady flips me her middle finger.

OH. NO. YOU. DIDN’T.

(For my readers from another land, this is the Charades equivalent of “Go Fuck Yourself.” It is sometimes called “Flipping the bird,” which has nothing to do with flipping or birds, so I cannot even begin to explain how that little colloquialism was born. Apparently, someone else figured it out, though, so here you go. I don’t know. Something to do with bows and arrows. It sounds a little too Monty Python-ish to me. Not necessarily a bad thing, mind you. But…

http://www.etsy.com/listing/62682834/garden-gnome-flipping-the-bird-concrete

Like this, but I’m pretty sure she wasn’t winking – twitching maybe – but not winking.

Worse, I could also see her mouth moving around some words that probably everyone is better off for me not having actually heard. The expression on her mean-mug face said all I really needed to know.

Then, I heard something snap. It maybe was the tendons in my ankle ripping under the force I used to hit the brakes on my car? But the likelier culprit is my mind.

I threw the car in park, flung off my seat belt, and before I really knew what I was doing, no plan whatsoever, I was outside my car about four feet from Bad Driver Lady’s ridiculous SUV. (This surprises you?)

Grrrrrrrrr!

Me: Hey! Let me ask you something. Are you illiterate or just a really bad fucking driver? (Gesturing to the large white letters painted on the ground. See the spectacular diagram above.) S. T. O. P. For Christ’s sake, even my four-year old can read that!

Bad Driver Lady: (With a lingering Valley Girl accent, which means she’s likely from Southern California, where driving is a whole other level of Atari.) Whatever. You totally saw me coming and sped up. You know you did. And you don’t have to get out of your car, ’cause I can get out of my car, too.

Me: Sure, get out of your car. Spare the rest of us your shitty driving. Maybe we can stand here and chat about how stop signs work and why you probably shouldn’t wave at people with your middle finger.

Bad Driver Lady: I can totally get out of my car, too. I can!

At this point, some semblance of sanity returned to replace the adrenaline rushing through my body. I think the flow of adrenaline was stemmed by the satisfaction of calling Bad Driver Lady “illiterate” despite quickly realizing Bad Driver Lady had no fucking idea what “illiterate” meant. The recaptured sanity also made my brain finally register the presence of a large German Shepard in the backseat of Bad Driver Lady’s car, which my eyes had seen but my mind had not really considered as a variable in any of the possible outcomes of this little tete-a-tete. Plus, she was really leaving me no place to go other than: “Get out here so I can kick your ass,” or “I know you are but what am I?” I believe this is what’s known as an “impasse.”

So, I got back in my car and drove away. In the direction opposite my house, of course, because things are now starting to occur to me that were nowhere to be found a mere 60 seconds prior. What if this was the mother of one of the kids’ friends? What if I end up in line behind her at the coffee place. Holy Angels and Target Gift Cards, what if she works for the district and is at my kid’s next IEP meeting!?!? This is not a big town.

Moments later I pulled over — in all places, the parking lot of my high school — and broke down in tears.

Because – yes, right now it’s a funny story – but it might not have been. What the holy hell was I thinking? Stupid question. Obviously, I wasn’t thinking. And THAT is the problem. Every now and then I feel like I am losing control of my brain, which freaks me the hell out, because besides some pretty nice feet, my brain is my BEST asset. (I do have really nice feet, though. Organ pipe toes and everything. Eddie Murphy would approve.)

Look. I want to make something very clear before anyone gets an itchy 911 finger. I had NO — I repeat NO — intention of actually starting some kind of physical confrontation with Bad Driver Lady. I’m pretty sure the only human being I’ve ever hit in anger is my sister. (But, she started it.) I confronted Bad Driver Lady because I was so overcome with the urge to defend myself — to prove that it was not I who should get fucked in the scenario.

The rational part of my brain fully comprehends that this is unnecessary and – frankly – impossible. The facts are what they are, and Bad Driver Lady will ignore them the same way she ignored the stop sign. I can neither fix nor be responsible for stupid.

Also, so what? I don’t know her. I don’t want to know her. What the hell does it matter that I’m “right?” Why – despite that I am a grown woman, the mother of two children (who I like to think are better off with me), a wife, a lawyer, a professor – does the rational side of my brain lose control to the emotional side like that?

I would not describe myself as some road-raging lunatic who confronts people in parking lots. When kids at school would all crowd around two people in a fight, I ran away. I couldn’t stand to see real-life violence. Except, there I was, without a moment’s hesitation — without a second of thought about the possible consequences until I was already knee-deep in the proverbial shit — acting like a road-raging lunatic in a parking lot.

What if Bad Driver Lady did get out of the car? What if she hit me? What if she’d had a gun? None of these were wholly unrealistic possibilities. These realizations and my embarrassment at how I behaved are what triggered the tears as I sat in front of the building that was so ridiculously symbolic I kept waiting for Simple Minds to come on the radio and Justin Henry to come around the corner carrying a birthday cake.

Why am I confessing this? Because I know the cause, but not the remedy. Because I need help.

Every day, my morning starts with a beautiful, now-five-year-old face staring into my sleeping, mascara-smeared, slightly wrinkled eyes. After we stumble to the bathroom and use the potty, we get back into bed. I hold my breath, because I know it’s coming.

Mama. No school today.

Except that it’s Monday. Or Tuesday. Or Wednesday. Or Thursday. Or Friday. And there is school.

I don’t answer. I get up, smear a pea-sized amount of toothpaste on a Cinderella toothbrush, and start singing. When we’re done:

Mama? No school today?

I don’t answer and slip down the hall to get a clean outfit. As soon as I reappear in my bedroom, the wild rumpus begins.

No, Mama! No school! No school! I want covers! I want to go to bed! I don’t like school! Please, Mama! No shirt! No pants! I don’t like it! Get off! Get off of me! Please! I want to go to bed! NO! NO! NO! NO! NO!

It is usually somewhere around 8:15 to 8:30 a.m. when this starts. It continues through getting dressed, trying to get breakfast down, fighting about putting shoes on, kicking and screaming to the car, singing 400 verses of Itsy Bitsy Spider from the driveway at home to the parking lot at school, sitting in the office to wait for a classroom assistant to retrieve Helene, and matching her tearful and fearful goodbye with an artificially cheery, “Have a GREAT day!”. The time is now 10:17 a.m.

All morning, through the crying, begging, pleading, hiding, escape attempts, hitting, kicking, thrashing, screaming, I have to maintain a calm, even voice. (Imagine Dora the Explorer on speed and speaking in a voice about one octave lower than a dog whistle before reading the next quotes.)

Helene is mad. But, it’s time for shoes! Let’s put on our shoes! 🙂

Helene doesn’t like school. That’s too bad, but we’re going anyway! 🙂

By the time I leave campus to plod back to my car, my nerves are so frayed – my senses are so overloaded – my spirit is so broken, I can barely stand to be around myself let alone anyone else. I have about three hours to collect myself AND get some work done (you know, so that we can do little things – like pay the mortgage) before Helene gets home from school. There will be a short reprieve and some snuggling until 3:00 p.m., which brings the commencement of the witching hour, ripe with meltdowns over food, television shows, iPads, falls from the sofa, snacks — you name it. Each meltdown is met with my same psychotically artificially calm voice the ABA therapists are so convinced will redirect or “extinguish” unwanted behaviors.

I imagine that now you may have an inkling why Bad Driver Lady got a full-frontal of my beserker-ninja personality. If it’s still unclear, drop a roll of Mentos candies into a two-litre bottle of carbonated soda, put the lid back on, and shake vigorously.

Ping!

That about covers it.

So, my parents of spectrum kids or my adult followers who are on the spectrum: What do you do to check yourself before your wreck yourself? How do you let it out in an appropriate way as opposed to calling people out in the mall parking lot?

My therapist made me go I finally went to the Mental Health department and am now taking anti-anxiety and anti-depressant meds. I started running again. Both of these things are very helpful, but they aren’t enough.

Is it the behavioral and emotional meltdowns that are stressful? I know that’s true for Helene. When she has a really big loss of control, it is usually followed by a good long nap.

Or is the real stress (for me anyway) in suppressing my natural responses to Helene’s behavioral and emotional meltdowns?

Does the answer to that even matter? I’m not being facetious; I truly don’t know, and I would be thrilled to hear any advice you’re willing to share.

What If I Can’t? and Other Questions about #Autism and #Parenting that Wake Me at 4am

Yesterday, my husband and I managed to get Helene to school.  The process started at 7:30 am and didn’t end until about 9:45 am.  We went through various phases of resistance that culminated in Helene crying from the house, to the backseat of the car and all the way to school, “Mama, please!  I want home! I don’t like school!  Please, Mama, please!”  She had it on repeat with the volume on 10 for the whole 2 mile drive to school.  We hit every stoplight.  And, yes, there was a lawnmower running nearby just to make sure we got the cherry on top of the cupcake of our morning.

We got her into the office for the tardy sign-in routine.  Helene continued her protestations and tears.  We we told we weren’t allowed to walk Helene to class, so an aide came to get her.  Helene’s pleading to leave only escalated when the aide appeared, but somehow I didn’t burst into tears until after I was outside, and Helene couldn’t see me anymore.  I’m sure it took a good ten minutes to get Helene from the office to the classroom.

For the past few weeks, we’ve been going through some enormous changes, and I really do not know what to make of them.  As I wrote before, Helene’s teacher was out for a while, which caused a lot of classroom and staff changes.  Helene did not handle that well at all.  To be clear, I was not and am not faulting Helene’s teacher for the absence.  Obviously, that was beyond her control.  But it nonetheless impacted Helene; she suddenly became super-resistant to going to school, her sensitivity to noise spiked, and she started to vocalize more her protestations (“I don’t like ____ being one of her new, favorite expressions).  She also started demonstrating an unwillingness to leave the house — period.

So, the past two weeks, we kept Helene home from school more often than not.  We forced her to leave the house only for something “fun.”  We emailed her teacher and the principal, asking for advice.  Instead, we got a lecture about Helene’s attendance.  Well, you think?  That’s pretty much what we’re asking.  So, we met with Helene’s social worker.  She is a  lovely, intelligent woman whom I adore if only because she doesn’t talk to my husband and me like we are idiots.  She provided some great guidance, but she also reminded us that getting Helene’s IEP changed in any meaningful way before school finishes in June will be impossible.  Then, we visited Helene’s pediatrician.  I love her, too.  We got her by accident when Nate’s pediatrician retired.  She’s about my age, has two kids of her own and doesn’t bullshit me.  She listens, she responds, she follows up.  She referred us to a developmental pediatrician, but who knows when that appointment will be.  In the meantime,  I am researching websites and making phone calls, looking for information or guidance.  I’ve talked to a lot of voice mailboxes, but not a single, live human.

We held out hope that once Helene’s regular teacher returned to class and things got back to the typical routine, so would Helene.  Helene is not settling back in at all.  Her agitation about school starts at about 7:30 p.m. — the night before.  Last night, Helene was so upset about the prospect of school the next day, she climbed into my lap at 8:30 p.m. and didn’t leave it until she fell asleep.  This morning, she crawled into bed with me and said, “Good morning, Mama.  No school today.”  Sigh.  Happy Friday.

While Helene was home from school more than not, we noticed not only the concerning changes in her behavior but some really positive changes, too.  She uses more verbs:  “I hear an airplane!” or “Mama stirring it.”  She actually has conversations with us throughout the day.  Granted, these are two or three sentence conversations, but just getting from question-echolalia to question-answer is huge.  She’s stopped needing a nap in the afternoon, because we haven’t woken her in the morning for school before she’s naturally ready to rise.  That means she’s going to bed and falling asleep at a reasonable hour more often than not.  She sits on the potty at least once a day — and goes — without a huge meltdown or argument. She opened the lid on a bottle of water by herself for the first time.  She is starting to get the gist of pronouns, especially “me.”

I think about all this, how much Helene is obviously distressed about going to school, and I wonder why we make her.  Is her anxiety, which becomes my anxiety, worth whatever benefits she gets from school?  There are definitely benefits.  She can manipulate a pencil well enough to write her own name.  She will touch wet paint and not only tolerate it but enjoy it.  She recognizes the entire alphabet and numbers up to about 25.  She’s (sort of) learned to take turns.  She eats foods at school that I would never get her to eat at home.  (Although, the day she walked up to me and smashed my cheeks in her tiny hands, saying “Chew!” over and over again was a bit disconcerting.)  She has her schedule at school memorized and will gladly recite it to you.  Helene’s speech and occupational therapists appear quite smitten with Helene and to enjoy working with her.  Her teacher is very well-educated and experienced; I felt her only shortcoming was that she doesn’t have children of her own to enable a certain degree of empathy I wish she had.

But that was before the email.  About a half hour after school let out yesterday, Helene’s teacher finally responded to our request for help.  There are some suggestions in the email about talking to Helene in an “upbeat voice” and telling her to “take a breath” when she’s upset.  We were chastised again for Helene’s spotty attendance and told that was the reason for her regression.  Then she wrote this:  “By modeling calm demeanor, rather than mirroring her emotional state, we are nearly always able to redirect her.”

If you heard a huge, thunderous bang yesterday afternoon about 2:12 p.m., that was my head exploding.

For the love of Pete, Helene is my daughter.  I have a natural, reflexive instinct to take away what pains her.  If she is in distress, how can I not be?  I understand Helene will be less successful at calming herself during a fit of panic if I feed it.  The majority of the time, I think my husband and I do a very good job of keeping our cool around Helene, because we understand that helps.  But, I am human, and I am going to feel like a giant pile of shit when I haven’t had enough sleep, I’ve spent the past hour listening to my daughter beg me — using her limited vocabulary and a lot of tears — not only to let her stay home but to take her pretty much anywhere else on Earth she can think of, and I have to face the rest of the day knowing that this whole process will start again tonight.

Even then, though, I’m not nearly as offended by the subtext of Helene’s teacher’s email that we are causing Helene’s anxiety as I am about the implicit expectation that I can just turn on a dime and stop caring about how anxious Helene is.  Apparently, there is no need to be exhausted, anxious, sad, frustrated, confused and concerned about why — seemingly all of a sudden — Helene melts down about going to school.  I just need to tell her in an upbeat voice what I want her to do, then ignore the kicking, screaming, running-and-hiding, crying, begging, pleading, tearful meltdown that follows.  It worked so well for Helene’s teacher today that Helene threw up not once but twice in class.  This is something she’s never done at home unless sick with the flu.

What if I can’t?

What if alternative behavioral interventions don’t work?  What if they work only when the person employing them is emotionally disconnected from the person to whom they are applied?  Maybe it is physically or emotionally impossible for me to do this.  My instinct is to hold Helene; to rock her, to soothe her with words – and she lets me.  How do I “ignore” Helene’s “non-preferred behavior” of expressing a desire to avoid school when the whole object is to get her ready for school, out the door and onto campus?  There is a certain measure of this that seems downright idiotic to me, because how the holy hell do you do both at the same time?

What if I shouldn’t?

What if becoming a cold, sterile clinician toward my daughter instead of the loving, comforting, understanding parent I’ve been is not what’s best or what’s “right” for her?  My mommy-intuition buzzer is going off like a fire alarm, and it’s telling me that something in the classroom environment is not right.  After the monumental struggle of yesterday, I was dreading transitioning Helene from school to her social skills class.  But, when I picked her up (and we evaded the lawnmower out front and the leaf blower across the street — WTF???), she said, “Go see, Dr. __, ___, __?,” naming off the teacher, aide and student in social skills to whom she seems most to relate.  We got to campus, parked, and Helene walked with me from the car to the classroom – a considerable distance – without complaint or even encouragement.  When the aide opened the door, Helene walked right in without even saying goodbye or looking back.  I walked to the car wondering, Why so different?  The only explanation I can make sense of is that there is something in one classroom she really doesn’t like and nothing in the other classroom that bothers her that way.

What if it backfires?

After reading Helene’s teacher’s email again last night, when I was in a better frame of mind to process it, it occurred to me that the applied behavioral intervention techniques Helene’s teacher uses might be backfiring on her.  Apparently, the practice involves telling Helene, “I don’t like it when you ___” [insert whatever Helene is doing that is not “preferred”].  If, after a couple of attempts to redirect her the teacher is unsuccessful, Helene is deprived of attention.  Repetition is apparently a key to getting the student to replicate preferred behaviors.  Well, it’s working — Helene learned to imitate this perfectly.  When she doesn’t like something, she tells us.  If she doesn’t get what she wants after several attempts at expressing her displeasure, she tries to evade us (e.g., deprive us of her attention) by tuning out completely or running upstairs and hiding under her brother’s bed or in ours.  If this is the result her teacher is shooting for, she hit the target.  Somehow, though, I doubt it.

What the Hell Am I Doing?

What I’m left with – yet again – is more questions than answers.  I don’t know what the right thing is here.  Do I push Helene to continue at this school, under this IEP?  The message I took away from the teacher’s email was that either we do that or she and I are no longer partners but enemies.  How’s that gonna work?  So, do I look into other schooling options?  I don’t even know if there are other options short of homeschooling her.  And, is that what’s best for her?  Sure, no one will love her more or try harder than I will (or her dad would), but I’m not a special education teacher.  There are somethings I won’t push because I am her mom, because I do love her and, therefore, having feelings about the cause a conflict between what’s best for Helene and what’s manageable for me, and because I have her 24 hours a day, seven days a week (about which I am not complaining but which does affect how much energy, patience and time I can give her).

In the law, the only sure answer is “it depends.”  I know that same philosophy applies here — what would a reasonable person do under the totality of same circumstances?  But, that lack of certainty never bothered me in my office, because I knew where to go to find the answers.  I could find a needle in the haystack of never-ending judicial opinions, statutes, regulations, practice guides and treatises.  Now, though, I am experiencing the desperation and frustration that comes from uncertainty and a lack of boundaries.  Damn lemons.

So, I would love for adults on the spectrum or the moms, dads, caregivers or relatives of someone on the spectrum who traveled these roads before I to share what has worked for you.  Please don’t tell me I am an awful mom, or that I don’t understand my daughter or autism.  First, I beat myself up enough, okay?  Second, I swear to you I am trying.  Help me; don’t judge me.  And please accept my advance gratitude for whatever advice or experiences you are willing to share.

Funny Stuff Our Kids Say, #2

Here’s the second installment of Funny Stuff Our Kids Say.  These mostly are “borrowed” from other folks’ kids and identities have been changed to spare the involved children the future embarrassment a Google ego search may bring. 

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My friend L’s parents are school teachers.  L is in eighth grade.  L, L’s parents and L’s parents’ best friends are having dinner when L asks her mother, “Mom, what’s a ’69’?”

L’s mother proceeds, at the dinner table, in front of guests, to explain – in detail – what a ’69’ is when referring to the kind of stuff you never, ever, ever want to imagine your parents doing.  Ever.

L gasps and says, “Wow.  [My friend at school] told me it was a C minus!”

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L now has a son of her own, C.  When C was about 4, he decided to leave the house wearing sandals and socks.  L tried gently to explain why that might be a fashion mistake of epic proportions.  C, undaunted, insisted on the combination. 

L:  “C, you can’t wear sandals and socks together.  It looks ridiculous.”

C:  “Well, Mom, I don’t really like what you’re wearing, either.”

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One night, J comes into his parents’ bedroom after having a nightmare.  J’s dad asks, “What was the dream about?”  J responds, “You should know, Dad, you were there!”

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My goddaughter, M, spent the night at my house one weekend.  She and my son, N, were playing.  They were about 3 and 5 at the time.  They got into an argument, so I put them both on time out.  A few minutes later, I asked N if he could behave himself and play nicely with M.  “Yes,” he said.  So I let him off the couch.  Then I asked M if she would behave and play nicely with N.  Silence.  So, I asked her again.  Nothing.  When I asked her the third time, N impatiently shouted at her, “M!  Just say YES!”

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My FB friends saw this one yesterday, but I’ll post it here again:

 Yesterday at ‎9:30 a.m., my daughter (who is 4 but whose speech is delayed because of autism) and I had the following exchange …

Daughter: Do you want chippies? (This means she wants chips.)
Me: You are not having chips at 9:30 in the morning. Pick something else.
Daughter: Chippies.
Me: Applesauce?
Daughter: Chippies.
Me: Banana?
Daughter: Chippies!
Me: Goldfish?
Daughter: Chippies!
Me: Strawberries?
Daughter: Chippies!
Me: (Holding up 4 fingers and pointing to each finger as I go) Applesauce, Banana, Goldfish or Strawberries. Which one?
Daughter: (Holding up 4 fingers, pointing to each one as she repeats her choices, pausing, then sticking out her thumb): Chippies!!!!!