Marginalized in the Middle: A Rebuttal to the NYT Article on “Beating” #Autism

A few days ago, an article titled The Kids Who Beat Autism appeared in the New York Times.  I needed time to think about and digest what Ruth Padawar, the article’s author, wrote.  I wanted my response to the article to be thoughtful rather than knee-jerk, because there are too many emotional reactions to the piece floating around out there already.  That is not to say, though, that my response is objective.  It cannot be, because my perspective is now forever biased by experiencing autism as the parent of an autistic child.  But, my bias is an important one.  I parent a child who is at neither extreme of the spectrum.  Although she is diagnosed classically autistic, she has no comorbid diagnosis.  She has difficulty with sensory processing, language processing, communication and social interaction, but she is not (typically) self-injurious, she participates to a fair degree in self care.  Her prognosis is such that both my husband and I, as her parents, and the professional team with whom she works, agree that there is a reasonable likelihood that she will accomplish at least some degree of independence as an adult.

My experience has been that autism the way we experience it gets the least amount of attention – both organizationally and in the media.   It is important to acknowledge autistics whose behaviors and characteristics fully disrupt their ability to live independent lives, because these individuals and those who care for them desperately need support and services.  But, this version of an autistic person has become the myopic focus of organizations like Autism Speaks and of the media, both of which paint autism with the broad-stroke brushes of “tragedy” and “epidemic” in an effort to bring attention (and money) to research.  This focus, though, forces those of us who experience autism in the “middle” – not as a “tragedy” that “steals” our children and “burdens” society but as a challenge requiring adjustments, compromises and planning – to continue to fight against stereotypes and misconceptions about what autism is and is not.  On the rare occasion the media presents a “positive” story about an autistic person, it too is an exaggeration, focusing on a small percentage of the autistic community that is unusually successful or gifted (even by neurotypical standards).  In between these two extremes are tens of thousands of autistic persons leading everyday lives – often in spite of a lack of support, acceptance, inclusion or services.

Articles like Ms. Padawar’s continue to marginalize the majority of autistics by leading the public to believe that if someone is not completely nonverbal and incessantly flapping her hands or able to instantly count the number of toothpicks dropped on the floor, she is not autistic or not autistic “enough.”  People like my daughter, who appear to strangers as “normal” and who may even participate in the beginning of social interaction only to fall apart when encountering a negative sensory stimulus, are left most vulnerable to judgment, stereotyping or rejection by neurotypical peers.  Having learned a version of autism that looks only like Carly Fleischmann or Temple Grandin, people do not recognize autism varied from those models, instead seeing autistic traits as standoffishness, undisciplined behavior, rude or as a “spoiled” or “weird” disposition.

From the outset – and still upon reflection – I found the title of the article misleading.  Although there is much yet to learn about autism, one thing we know is that autism is not a disease; it is a developmental disorder.  More particularly, autism is the product of atypical neurology in the brain.  Unlike a virus, bacterial infection, cancer or other disease, there are no truly objective tests and no known cures for autism spectrum disorder. Instead, autism is diagnosed by observation, parent reporting of observations and, where possible, self-assessment.  The diagnostic criteria try to remove as much of the subjectiveness as possible, but any diagnosis based upon human perception and interpretation is inherently less reliable than – say – a blood, genetic or other medical test. It is difficult to know whether a person who was once diagnosed autistic but is later found to have “lost” the diagnosis was properly diagnosed in the first instance.  I don’t doubt that for a small percentage of autistic persons, the treatments or interventions designed to help an autistic person address behaviors that inhibit participation in important life activities – education, employment, independent living – result in mitigation of behaviors or characteristics to the point that an observing psychiatrist or psychologist could not detect the presence of autism criteria.  But, to say this person “beat” autism implies that this person is “cured.”  That, though, is not possible absent a change in neurology. It is akin to saying that a bipolar or schizophrenic person could be cured.  Although one diagnosed schizophrenic or bipolar may mitigate her disabling behaviors with medication and therapy so that the disorder is not readily detectible, she is nonetheless schizophrenic or bipolar, because that is the way her brain is wired.

I try so hard to educate family and friends about autism in an effort to avoid hurtful comments and questions.  Asking me, “When is Helene going to get better?”, “Is Helene getting better?”, or “Why isn’t Helene getting better?” is painful for me on many levels.  It is frustrating (Why would you even ask that? Why not ask just, ‘How is Helene?’); it is guilt-inducing (Am I not doing everything in my power as a parent to improve her quality of life?); it is heart-breaking (Why can’t you just appreciate where she is right now, in this moment, for the beautiful, loving, funny person she is?)  So when a mainstream media outlet, like the NYT, ledes with a headline suggesting that a “cure” is possible, it undoes a lot of work autistics and advocates have done – both internally and externally – to set realistic expectations about autism that are a necessary precedent to the acceptance and inclusion so many of us hope to experience.  It floods my Facebook timeline, Twitter feed and email inbox with incessant and unforgiving reminders that no one is ready to truly accept my little girl.

I did appreciate Ms. Padawar’s inclusion of additional points of view, particularly her inclusion of comments by Ari Ne’eman (who is himself autistic).  Too often, important discussions about autism do not include autistic voices.  I can think of no better expert on what it’s like or what it means to be autistic than an autistic person.  But, as autistics are fond of saying, “If you’ve met one autistic person, you’ve met one autistic person.”  No one autistic self-advocate speaks for the whole autistic population, and the quality of having an autism diagnosis does not necessarily imbue the speaker with unassailable authority.  Autistics deserve a seat at the table, but the invitation is to engage in critical inquiry, not to occupy the entire dialogue.  So, I am deeply troubled that Ms. Padawar did not offer a counter-point to Mr. Ne’eman’s assertion that autism is the equivalent of homosexuality.  That’s an overly bold statement akin in my mind to saying that because I experience gender discrimination because I am female, I know what it’s like to experience discrimination on the basis of race even though I am Caucasian.

In fact, Mr. Ne’eman’s autism-homosexuality analogy is deeply flawed.  While autism and homosexuality are both the product of a particular neurology, homosexuality is indisputably not a disease or disorder.  The state of being homosexual does not require treatments, interventions, medications or therapies (although such things may become necessary responses to the damaging effects of discrimination against, hostility toward or rejection of a homosexual person).  While I understand Mr. Ne’eman’s point – autistics also would not need treatments, interventions, medications or therapies were they not victims of discrimination, hostility and rejection – the analogy fails to account for two salient differences between autistics and homosexuals.  First, autism is medically recognized as a developmental disorder principally because it presents with characteristics that are, unequivocally, disabling (such as compromised auditory processing, lack of communication skills, poor receptive language or extreme sensory reactions / dysfunction). Homosexuality has no disabling features.  Second, homosexuality is not a “spectrum.”  You cannot be a different degree of homosexual than the next person.  This is decidedly not true of autism.

I don’t want to discourage media coverage of autism, and I appreciate efforts to raise awareness in the broader public.  But, I hope that as journalists and reporters delve deeper into the autism community, they recognize and begin sharing stories about the community’s diversity – about the challenges and joys of the individuals not only at either end of the spectrum but also the very many who occupy the space in between.

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.

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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.

 

 

 

 

 

 

 

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

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

I started with this:

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

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

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

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

F

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

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

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

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

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

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

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

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

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

1.  Listen or read before you respond.

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

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

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

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

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

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

 

 

 

 

 

 

Sometimes, the stars align and magic happens

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

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

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

Me:  “What are you doing?”

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

Helene:  “I go get haircut.”

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

Helene:  “I want haircut.”

Um.  Okay?  Okay.

*Fast forward 20 minutes*

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

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

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

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

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

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

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

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

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

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

But, WAIT.  THAT’S NOT ALL!

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

Then this happened:

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

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

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

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

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

We hit the mother of all lotteries.

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

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

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

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

Happy 2013. Yes, I mean 2013.

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

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

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

In no particular order:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy New Year.

Weigh In Wednesday #5

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

Weigh In Wednesday #5 – Woot woot!

you are hereWeigh In Wednesday 5

What went well this week?

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

What did not go well this week?

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

Whaddya got to eat around here?

tortellini cream pancetta peas

Tortellini with Pancetta & Peas in Cream Sauce

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

And how do you feel about that?

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

Tip of the Week

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

How YOU doin’?

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

Weigh In Wednesday #4

Recipe for Success

Weigh In Wednesday #4 – Woot woot!

you are hereWeigh In Wednesday #4

What went well this week?

EXERCISE!

200 miles

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

What did not go well this week?

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

Whaddya got to eat around here?

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

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

And how do you feel about that?

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

Tip of the Week

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

How YOU doin’?

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