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.

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.”

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 55^th 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’.

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:

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?

Yeah. I thought not.

Cool. So, here’s the diagram:

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…

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?)

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.

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.

“I Wish I Didn’t Have Aspergers”: An #AutismPositivity2012 Flash Blog Event

I came across this on two different blogs I read:  Flappiness Is and The Third Glance.  It is a wonderful idea, and I am excited to take part in it. To read more about this project, please go here:

To “I Wish I Didn’t Have Aspergers”: An #AutismPositivity2012 Flash Blog Event.

I haven’t been the biggest fan of Autism Awareness Month.  Like many parents, I am all TOO aware every single day of my daughter’s life – and those days don’t happen only in April.  I also find myself very angry at or depressed by most of the media coverage on ASD during this time, which sadly does more to reinforce stereotypes, trigger hysteria or raise false hopes in the name of ratings, forsaking the whole spirit and purpose of raising awareness and fostering acceptance.

Similarly, it’s been sad and difficult to see the dissension within the ASD community, especially when that leads to anyone in the community feeling as though she is not heard or understood.  It makes me think back to the days right after my daughter’s diagnosis, when I was desperately seeking information and often found my Internet searches leading me into a quicksand of despair.  When my daughter is of an age to start asking questions about herself and to want to find information that helps her understand Autism, I want her to find the posts from this project; not bitter words, misinformation or ostracism.

So, I eagerly add my voice to this project and encourage anyone – with or without a blog – to do the same.  If you don’t blog and would like to use my blog as a vehicle for making your story a part of this beautiful project, please email me at profmomesq at hotmail dot com.

Tuesday, a/k/a The Day I Lost My Shit at Daughter’s School and Realized I Have a Heart

When it comes to decision-making, I am usually an unemotional person.  My sister describes it as my “tink-tink” factor — my logical mind makes most of my decisions, not my steel heart.  Much of my decision-making reduces to this quote from Forgetting Sarah Marshall:  “When life give you lemons, just say fuck those lemons and bail.”

When my daughter —

who will henceforth be called Linny, after her favorite Wonder Pets character, because I’m sick of typing “my daughter” and with the mess her waist-length hair was this morning, she pretty much looked like a (really cute) guinea pig

— was diagnosed with autism, my immediate reaction wasn’t heartache or disappointment or sadness.  It was almost clinical.  Okay.  This is happening.  Let’s research.

So, I devoured every word I could find about autism.  I plowed through articles, blogs, books, handouts and websites with a surgical precision, separating the fact from the fiction, the science from the wishful thinking, the method from the madness.  I sat through that first IEP meeting wearing my lawyer hat, not my mom hat.  Fuck these lemons.

Of course, I know why I do this.  It’s a self-defense mechanism.

It gives me a false sense of security and control.  It makes me feel like I am doing something about a situation that is completely beyond my ability to change.  When I met with Linny’s social worker right after the diagnosis, and the social worker asked me how I was handling the diagnosis, I matter-of-factly responded that I didn’t see how it was about me.  I knew why she looked puzzled and concerned; I just ignored it.  Fuck these lemons.

It also protects me against guilt.  I knew something wasn’t right for Linny.  In September 2010, before Linny was diagnosed, I went out-of-state to visit some family.  One of my cousins has a daughter (G) who is a few weeks older than Linny.  (At that time, they were three years old).  While I was at their house, I baked some banana bread.  G came into the kitchen while I was gathering ingredients, shoved a stepstool next to me, climbed up and said (clear as day), “Can I help you?”  She helped me crack eggs, measure flour and mix the dough.

When we finished, I hid in their bathroom and quietly cried.  If someone asked right then why I was crying, I would’ve said I didn’t know, and that would have been the truth.  But my heart — that mother’s intuition part of me — it knew what my mind couldn’t or wouldn’t acknowledge:  most three-year-olds have the motor skills to slide stepstools and climb up on them; most three-year-olds speak in clear words and phrases that include verbs; most three-year-olds have the manual dexterity to push a spoon around a bowl; some three-year-olds can even follow directions involving more than one command.  My three-year-old could not do any of these things.

So, when Linny was officially diagnosed with autism, my clinical approach to the situation let me stifle the horrible guilt about not trusting my instincts and acting sooner, for deluding myself into believing that there was just something wrong with the anatomy of her mouth that was causing a speech impediment. Fuck these lemons.

After the diagnosis, the armor began cracking.  I would have small bouts of sadness:  the Facebook posts about other people’s same-aged children hitting milestones and expressing feelings Linny hasn’t or can’t; the photographs of    t-ball games, ballet recitals, and field trips that would not be.  I would violently push them away, chiding myself for thinking something less than positive about Linny, as if I was being disloyal.  Fuck these lemons.

It wasn’t until this morning — 1 year and 2 months since Linny was diagnosed — that the sadness and anger finally, truly hit me — like a fully-loaded sixteen-wheeler at 65 miles per hour, coming at me head on.  And, it was the mother of all truck wrecks.

As I’ve mentioned, Linny goes to school everyday at a local elementary school that has an autism-specific classroom.  She’s not all that happy about it.  Some of her resistance I understand as her expression of a preference to stay home in the comfort of her familiar surroundings, kickin’ it in her PJs, watching the same episode of Wonder Pets over and over again.  I mean, who doesn’t want that?  Some of it, though, seemed off to me.  Once again, instead of listening to that mother-intuition-buzzer going off in the back of my mind like a buzzsaw boring down on an oak tree, I went all clinical.  She needs to go to school.  This is important.  If I cave in and let her stay home this time, it will be only worse next time. 

Fuck these lemons.

Yesterday, though, Linny objected so profusely to going to school that I was a good hour late getting her there.  (This, as you can imagine, so endears me to her teacher, who cannot manage, despite a Master’s degree in special education, sympathy for the challenge of getting Linny up and out of the house and to school by 8:15 every morning.)  Linny was not full-on crying when I dropped her off, but she was doing this quiet whimpering/muttering thing, and her eyes were teary.

When we got to her classroom, Linny’s usual classmates were there, as were two of Linny’s regular classroom aides.  However, there were also two new teachers, because Linny’s regular teacher was out sick. Still, Linny hung up her backpack and walked into the room.  She even said goodbye to me.

Thirty minutes later, my husband called me at work.  Linny threw up in class, and the school asked him to come pick her up.  No one offered an explanation.  When my husband arrived at the school office, the first thing Linny said to him was, “I sorry, Papa.”  She was standing there in the office, wearing socks but no shoes, a pair of cut-off sweat pants, with a shirt covered in barf.

Fuck those lemons!

If you have a child on the spectrum, I don’t have to explain the very low likelihood that Linny apologized to her father because she threw up (which by that time had happened at least 20 minutes earlier) or because she suddenly, magically comprehended that it would be polite to apologize for interrupting Papa’s workday.  My money is on her apology being directly related to something some clueless, insensitive adult said to her shortly before Papa even got there.

I sat on the other end of the phone, feeling my blood boil.  I literally could not concentrate on work for the rest of the day.  One of my credit card companies made the horrible mistake of calling me at work to ask why my payment was late.  (I’ve got some other shit on my mind, okay?)  I am pretty sure that lady is now the proud owner of a new asshole.

I laid in bed for an hour last night, dreading this morning.  At 11:30 p.m., I gave up and took two sleeping pills.

Fast forward to 8:40 this morning.  Linny is again whimpering/muttering in the backseat of my car as we drive to school. We park.  Just as I get her out of the car, the landscape guys working at the house across the street simultaneously started a lawn mower and a leaf blower.  Core meltdown ensues, and Linny bolts away from me.  It is only by the grace of some celestial being that she bolted toward the school and not into the street, which is only about twenty feet away.

By the time she and I get into the office where I have to sign her in, Linny is sobbing.  This is not the crying of a kid who is not getting her way.  This is the sobbing of a kid who has just been terrorized.  I’m trying to calm her while the attendance secretary signs her in.  I then hear the attendance secretary ask the receptionist, “What room are we putting *these kids* in today?”

What. The. Holy. Hell.

I ask the attendance secretary if I’ve heard her right.  I ask her what she means.  She tells me that because the regular teacher is still absent, they’ve split the kids usually in Linny’s classroom into different rooms with different teachers.

I want to take a moment to say that this is where the clinical side of me sometimes saves my ass.  Because, instead of ripping this woman’s head off, I said, “Listen.  I don’t know how much you know about autism, but routine and consistency are very important for ‘these kids.’  It’s really not a good idea to move them to a room with which they aren’t familiar.”  While she “agreed” with me, her next sentence was this, “But, she’ll be with the other kids from her class.”

BAM!  My whole world went red.  Linny spends an hour a week in a social skills class because her greatest limitation is her inability to interact with her peers, she is entirely dependent on an adult she trusts to communicate her needs, but I should’ve been okay with her spending five hours in an unfamiliar classroom, with unfamiliar adults and unfamiliar routines because – hey – she’ll be with her “friends”?!?!?  These are the people I leave my daughter with each day?

I honestly don’t remember what I said to the attendance secretary next, except that I’m sure it wouldn’t be recounted as “polite.”  It was like I had some bizarre out-of-body experience, because before I knew it, Linny and I were in the driveway at home.  Linny kept saying, “Home.  Home.  Home.” as we walked up the driveway and through the garage.  I swear to you, if that kid was wearing ruby-red slippers at that moment, she would’ve been clicking her heels together like a river dancer on St. Patrick’s Day.

I left Linny at home with her dad and cried all the way to work.  The tectonic plates of my life shifted this morning, and now I’m suddenly, finally feeling what all this means — not just for Linny but for me, for her brother, for my husband, for our marriage, for our future.

All the logical reasons for me to be here at work, sitting at this desk, pushing around paper — income, health insurance, connections — they all of a sudden stopped making any sense.  My heart hurts.  My head hurts.  My priorities are tumbling around like a load of socks in the dryer.  It’s as though I realized this morning that the logical “choices” I thought I was making weren’t really choices at all.

I want so badly to say “fuck those lemons” and bail, but what things are the lemons?  From where am I bailing?

I wanted this post to have some kind of neat, tidy, happy ending.  The best I can do is acknowledge that the hand of karma finally reached down and smacked me upside the heart so that I’d wake the hell up and actually start using it.  Now, I just need to figure out how.

#Autism, Equality and Education: My Contribution to the Discussion @MamaBeGood and @RaisingASDKids Started

A bit ago, I posted a link to a discussion started by Brenda (@mamabegood) and Elise (@RaisingASDKids).  I thought the discussion presented some interesting, divergent and meaningful points of view on what creating an equal opportunity for our children on the spectrum means.  When I posted the link, my first reaction was that my perception of equal opportunity for my daughter fell somewhere between Elise and Brenda’s perceptions, and while I wanted to share their discussion with others right away, I also wanted to process their thoughts and others’ comments before posting my own.

I’m glad I did for several reasons, but mostly because some folks came out of nowhere with some pretty nasty comments, mostly to Elise.  So, I want to start with a disclaimer:  You don’t have to agree with me.  You don’t have to agree with Brenda or Elise.  You don’t have to agree with anyone else who comments on this or another blog.  But, you should contribute to this discussion only if you can respect differences of opinion.  There are many, many things we can debate about raising spectrum kids, but I hope we all agree that raising a spectrum child is challenging enough by itself.  If children on the spectrum and their parents are all challenged by the lack of awareness in society at large about ASD, why would we add to that by community in-fighting?  We all ultimately want the same thing:  the best life can offer our children.  So, attacking each other on this topic (or any other) is counterproductive to that goal.  It’s only by creating an environment where we can each share our perspectives without fear of reprisal that we can have a discussion with diverse enough ideas we might find some solutions.  There doesn’t have to be consensus; there just needs to be dialogue.

Here’s the bottom line:  If you call me an idiot or evil or stupid, I am not listening anymore to what you say next, no matter how valid your point, and I am deleting your post.  You will not bring me around to your point of view by verbally beating me (or anyone else) into submission, so take that nonsense somewhere else.  No one’s child came with a user’s manual, and we’re all doing the best we can and learning as we go.  Mistakes will happen, because none of us is perfect.  If you think I made one, say it.  But say it nice.

Now, with that long-winded disclaimer …

My ultimate goal for my daughter is that she live as independent an adult life as she can.  The road that gets us from today to that day is not mapped for us.  Right now, my daughter is in an autism-specific classroom.  That seems to work for her in many ways; in other ways, it is not optimal.  But, so long as we make forward progress, we will keep on, knowing that there will be forks in the road sooner or later.  One fork sure to come is deciding between special education classroom and mainstream classroom.  Right now, I see more disadvantages to a mainstream classroom than advantages.  So, if forced to make that choice today, we would opt for a special education environment, even if that meant private schooling or homeschooling.  But, we don’t have to make that decision today, and the landscape may change dramatically between now and then.  That means that the only thing I am certain of now is that the decision is highly individualized and based not only on the needs of the child but the means of the family making it.

For me, though, the decisions about the environment in which my daughter’s education takes place are different from (although related to) decisions about what that education should teach.  What I found so intriguing about the discussion that Brenda and Elise started, and which (some of) the comments on their respective blogs furthered, is the underlying idea that what a child learns is a product of the environment in which she learns it.  Where I come out on this is here:  I think how well a child learns is a product of the child’s learning environment, that it is entirely possible for a spectrum child to learn everything she needs to know to succeed in the broader world without ever setting foot in a mainstream classroom, and that whether education is delivered via mainstream classroom, autism-specific school or your dining room table, the learning is going to have to include some measure of behavioral learning that is indispensable to functioning in the broader world.

Brenda’s observation near the end of her blog resonated with me:  Autism cannot be “behaved” away.  Autism is a neurodevelopmental disorder with roots in some unknown combination of genetic mutations and environmental factors.  No matter how well a person on the spectrum learns to control or redirect his or her behaviors, that person is not cured; she remains on the spectrum.

Where Brenda and I part company to some degree I think lies in the difference between diagnosis and treatment.  Autism manifests itself in behavioral ways, so treatment focuses on addressing behaviors that interfere with or preclude daily functioning and that affect social interactions.   I absolutely agree and believe that no treatment should ever, ever involve shaming a child — NT or otherwise — into changing behavior.  But, I’m not sure that I can agree with an argument premised on the idea that helping a child on the spectrum learn to change or redirect behaviors to better integrate or function in an environment (NT or otherwise) is to simultaneously teach the spectrum child that she is “less than” others not on the spectrum.  For example, my daughter stims by running back and forth across a room on her tip toes (which she’s doing now, as I write this).  When she’s doing this, she isn’t focused on whatever else needs to happen at that time, whether it’s handwriting practice, brushing teeth, eating dinner or reading a story.  If she is taught not to stop stimming but to stim in a way that is less distracting for her and those around her, I don’t feel as though that’s shaming her or teaching her she’s less than her peers.  That kind of behavior modification acknowledges the need for the behavior but enables her to direct in a way that improves her own environment and maximizes her chance of successfully completing tasks she must learn to self-complete to reach independence at some point in her life.

None of that is to say, however, that leveling the playing field or creating an equal opportunity to learn for my daughter or any other child on the spectrum inexorably leads to a mainstream classroom.  Believe me, her stimming is just as distracting to her Autistic peers as it would be to a room full of NT children.  But, her autism-specific classroom teachers and staff are far better equipped to respond to stimming and other Autism-specific behaviors.  There are nine children in my daughter’s class and four adults.  The whole curriculum is geared toward and built around how children with Autism learn.  The kindergarten teacher down the hall, as lovely and good as she may be, is not well equipped to deal with my daughter stimming up and down the rows of desks or the fact that she’s not yet toilet-trained while contending with 29 other kids.  So, my daughter is learning a lot more in her current environment than a traditional classroom would allow.  It is, however, an imperfect solution.  My daughter is particularly sensitive to crying.  If a fellow student in her class has a meltdown, my daughter is intensely distracted by it, and often becomes upset herself.  Her teachers are working with her to redirect her attention, but I wonder if they are asking too much.  Anyone who’s been on an airplane with a crying toddler can attest to how hard it is to tune that out.  Yet, just as we must learn to “deal” with crying babies at 35,000 feet if we want to fly, my daughter and others like her are going to have to learn to deal with that kind of distraction (or annoyance), too.

This brings me to where Elise’s comments resonate with me.  Everyone of us has a gift – a talent or ability – upon which we can capitalize in a personal or professional way.  (Both, if we’re lucky.)  I’m good with words, but not with numbers.  So, I chose a path for myself that allowed me to emphasize my strength and minimize my limitation.  My son is musically inclined and very math-brained, but writing frustrates him.  (Making homework so much fun …) It makes sense to me that his future path will lead him toward a career or personal activities that allow him to pursue what he does well and avoid what he does not.  For me, “equal opportunity” or a “level playing field” for my daughter is nothing more or less than the ability to find and pursue her talents and minimize her limitations.  I never expected the world to accommodate my inability to understand math, and I don’t think it’s wrong that anyone expected me to try to understand it.  I don’t think anyone should accommodate my son’s intolerance of or disinterest in writing essays, and I have problem leaning on him to accept that’s part of the deal when he goes to school.  By the same token, I can’t expect the world to allow my daughter to become something she has neither the skills for nor interest in becoming.  What I can do — what I do — is make sure she has the opportunity to try — to explore as many things as possible so that she can find what she loves and what she’s capable of doing.  And, if creating opportunities for her to try something means helping (and, if appropriate, pushing) her to adapt to the environment she wants to explore, then that’s what we will do.  Conversely, if there is a reasonable way to adapt the environment to her, we’ll do that, too.

But, I do mean changing the environment and not the basic skills required for what needs doing.  For example, to work as a UPS driver, you must be able to bend and lift up to 70 pounds.  If you cannot do this, you either need to improve your physical condition or find different work.  It is not reasonable to ask UPS to change the entire way it runs its operations so that a person who cannot perform these essential skills can work as a UPS driver.  There is a serious, important and legitimate difference between setting expectations and putting up obstacles.  A level playing field is not one free of expectations; it is one free of obstacles for the player.

In our quest to honor diversity — which is an important undertaking — sometimes we become less tolerant of it.  When we say that we are all created “equal,” we are acknowledging that we are all – as human beings – entitled to the same basic rights.  It is not an edict that we all be allowed to do or be capable of doing the same things.  Would Adele be as remarkable if everyone had her sultry, smoky voice?  Would Nolan Ryan have been as remarkable had everyone his pitching arm?  Would Marlee Matlin be as remarkable if every deaf woman could act as well as she?  Would James Durbin be as remarkable a member of the ASD community were he not so gifted a vocalist?  Conceptually, we don’t seem to have a problem understanding and even glorifying diversity of talent.  But, the same logic that applies to diversity of talent — which is certainly a spectrum — can apply to diversity of ASD (or nearly anything else).  In the comments on Brenda’s blog, Maureen Mitchell wrote that people on the spectrum are like “snowflakes.”  True — very true — but that analogy applies to us all as human beings.  Equal opportunities and level playing fields are not about making all the snowflakes look alike.  They are about letting the flakes make up the snow, wherever it may fall.