Process, Represent, Toot

The Meeting

Just before the holiday break, G, whose autism spectrum disorder presents with a variety of significant motor and neural challenges, lost his IEP status. Having access to an IEP (an Individualized Education Program [or Plan]), or what used to be known as “being in special ed.” is federally mandated through the Individuals with Disabilities Education Act, but is administered differently from state to state. In Vermont, the threshold for “adverse effect” is testing below the 15^th percentile.  At his three-year IEP evaluation, G tested slightly above this percentile on one measure (reading), and substantially above on another (math).  Several of the nine people assembled in that room thought this was terrific news.

The rest of us knew they had used the wrong measures.

Those of us with children in the IEP system periodically receive giant stacks of paperwork from which we are meant to glean both

1.     what is important in our child’s life and

2.     which areas are open to our active participation.

Had I read – somewhere in the latest bureaucratic morass of information packets and forms requiring my signature - the single sentence, “We will be testing G on math and reading,” I would have taken notice. Had I understood this one piece of information, I could have told them weeks in advance that he wouldn’t qualify and could have saved my son a whole mess of unnecessary testing.

Unfortunately, however, I – holder of an Ivy League Ph.D. who reads every word in these piles – was unable to discern this simple fact in time. I shudder to think how those parents who are unaccustomed to giant morasses of the written word variety process these packets.

Fortunately, I was tipped off the day before the meeting that G was about to lose his IEP status. I thus was able to PROCESS the feelings and ideas that would have squished me (on my slice of the spectrum big feelings of any sort cause shutdown), and thereby prevented me from any meaningful participation…had they been new to me at the start of the IEP meeting.

For maximum authority, I dressed in my teaching clothes -- grown-up style duds in my requisite Goth black. In Vermont, not wearing denim and fleece is a badge of sophistication and, possibly (I hoped), power. 

The district brought in the big guns, the Director of the district, to break this news to G’s “team.” I believe they expected G’s teacher and I to be cowed but we were not. 

G’s teacher was a fierce and compelling advocate, who came prepared with an arsenal of points in favor of G’s continuing on an IEP. He asserted that ALL of G’s teachers feel very strongly that he needs to be on an IEP; that indeed his Literature Circles teacher says he is “the one child out of 40-plus in his group who absolutely must be on an IEP.”

We were told that the Feelings of teachers don’t matter.

 We were told only “objective” measures can be used to justify (the funding of) a child’s (expensive) IEP status.

Dueling acronyms were bandied about, statistics parsed…

It emerged that it doesn’t actually matter if someone has a diagnosed disability… so long as that disability doesn’t place him or her in the 15^th percentile or below.

“He’s sort of a victim of his own success,” one “team” member explained, making the universal hand gesture for “gettin’ real high up there.” “These scores show that G is getting higher and higher up the mountain of achievement.”

Except - he’s not.

Where he used to get “Super!” and “100%!” (with smiley faces in the zeros) on his spelling tests, now that he is in fifth grade my gifted child can barely write a sentence. The PROCESS of writing a single word is very, very different from that of writing a sentence or paragraph. In writing more than one word, G loses focus. Although he reads at almost adult level and has marvelous comprehension, he misspells 50% or more of words. Without reminders, he does not capitalize first words of sentences, nor does he punctuate.

I was furious, but manageably so, since I’d had time to PROCESS: “Here is a kid, I said with deadly calm, “who should be testing in the 80^th and 90^th percentiles based on his intelligence, but because of his disability is testing in the bottom third and there’s nothing we as a school community can do about it???”

“Well,” the district psychiatrist informed me, “that is a symptom of a larger societal problem.”

“All we are responsible for,” added the Director, in a tone I read as smug (but I am not such a good reader of tone), “is providing a basic ‘free and appropriate public education.’”

”Then what is our purpose here? If letting our children down is acceptable to you, why are you here?” I asked.

There was no response.

So I continued, calling on some of the many ideas that had been racing through my mind all night: “I would suggest, then, if you want to help G you ought to test him on the measures in which he is falling behind. Please tell me the other areas in which students can be found eligible and [teacher] and I will let you know which of those are a good fit.”

“’Written Expression’ and ‘Orientation/Mobility’,” said the Director, after a pause.

“Perfect.” Said I. “Those are the very areas in which he is struggling.”

Having had the opportunity to PROCESS, I was able to question and to REPRESENT my son’s interests: to bust out my big words and my for-once tangibly-useful doctorate and the statistics classes I took in graduate school. Once again, what do parents who haven’t had the privilege of extended education -- or who don’t have the skills or confidence to stand up to Important People – do under similar circumstances? I could never have effectively (confidently, somewhat skillfully) advocated for G if I hadn’t spent the entire night before thinking about what to ask and say in this meeting. Spending my entire life in academia probably helped too. 

Do IEPs help?…Sometimes.

I was told in this meeting, and it makes some sense, that “the three-year evaluation is intended to protect students from being dumped into the special ed. system and staying there even when they have progressed out of it.”

Ambivalence is as much a part of this process as advocacy! I certainly don’t want G to be subject to – or feel himself – the stigma that sadly remains associated with being on an IEP. So why on earth would I want him to receive services if they were not crucial to his survival as a student? IF it helps him – does it? – I want him to have all the helpful help that can be helped…

Without any services, without aid with transitions and organization, G might get lost, “fall through the cracks” -- or he might “rise to the occasion.” He might be “just another gifted kid not living up to his potential”…

As his teachers and I watch the gap widen between G’s intelligence and intentions, and his written expression and executive function, we wonder if we will be able to get him the services he needs. His teachers serve dozens of students and are at the mercy of the system for their livelihood. While G’s teachers are more than willing to advocate ardently for G, there is only so much they can do. The rest will be up to his family and community. And to him.

A.A. Gill’s wise recent article in Vanity Fair (http://www.vanityfair.com/society/2012/12/aa-gill-schools-ruining-our-kids

-- enjoy!) gives pause to the notion that school success is the sole predictor of life success. But if G struggles academically because of his disability he should have access to help if he, in all good faith, wants to succeed in school! 

In effect, the astonishingly low “adverse effect” threshold in VT, coupled with unsuitable testing has turned my son into an experiment.

Process, Represent, Toot

As rough as the social piece can be for G right now, and as challenging as some aspects of school can be for him as well, my deepest, darkest fear, the one in my mind almost constantly is: what will G do when I am gone? I know some of you other parents out there feel me on this. Maybe he will be just fine. I sure hope so! But he might need some help and -- as any parent would -- I hope that when he needs that help, the help will be there.

Will it?

Here, G may be losing his elementary school safety net. Since one might naturally assume that childhood is where the best safety nets would be found, this raises doubts about safety nets in general. What about the bigger safety net for people, including adults, who are not neurotypical or are differently-abled? What about the “larger societal problem” to which the district psychiatrist referred???

With the recent stigmatization of Aspergers and autism in the media (please see previous post: http://fullspectrummama.blogspot.com/2012/12/ignorance-ahoy.html), it seems a fabulous time to begin to tackle these problems. Chief among them are ignorance and limited resources in schools* and communities. Advocacy both for students and their parents (not all of whom know their rights!), as well as education and community efforts around disability might be some directions to take whatever talents and energy we have.

So long as I have a good chunk of PROCESSing time, meaning I know IN ADVANCE what issues and objections will be raised, I should be able to lend my voice to these efforts. This IEP meeting was a great lesson for me about how to optimize my ability to REPRESENT my own and my children’s best interests. Like G, apparently, I need time to internally PROCESS and then transition into external expression and interaction in any potentially intense context. In this post, I am TOOTING my own horn about how I handled the whole thing, because I just learned so dang much. 

I want to use that knowledge to foster G’s ability to PROCESS his sensory and intellectual and emotional intake, so that he can best REPRESENT himself in his endeavors, and TOOT his own horn – stand up for himself and be proud and, especially, self-advocate -- when appropriate.

Resolution

G’s remarkably operatic three-year IEP evaluation began with some serious acrimony, officiousness and righteousness. There occurred pounding of tables, raised voices, trembling (not even by me!).  Praise be, we all managed to stay in the room until some consensus was reached. Thanks to G’s teacher and me, the meeting ended up with the team’s agreeing that G was not well served by the testing that had taken place. He will now be tested in the other two areas of eligibility in Vermont, “Written Expression,’ and “Orientation/Mobility.” 

So G is about to endure another round of testing, this time in areas in which he actually does have significant adverse effect. We shall see if it meets the criteria. If so, may the help he gets be targeted to his real needs. May it be helpful.

This is the hope with which many of us left this meeting.

As I walked out of the school, feeling I had just, for once, made the best of a difficult situation – i.e. for once I had not been completely overwhelmed  – I looked down at my “professional” all-black outfit with a feeling of maturity and satisfaction.

I then noticed that I was completely covered in white cat hair. Glad I didn’t find THAT out at the beginning of the meeting.

Love,

Full Spectrum Mama

* I cannot imagine the Director of the district got into the field of education in order to deprive students of services due to limited resources (which inevitably must result in tighter testing standards). This must be one of the most difficult aspects of the job.

Ignorance Ahoy

In this time of pain and grief and uncertainty I'd like to say, Thanks, local paper, for perpetuating rampant stupidity:

Re: "Windham County schools helping students cope," by Howard Weiss-Tisman, 12/18/12

To the Editor,

As friends, parents of and/or persons with autism spectrum diagnoses, we would like to clarify some important and potentially damaging aspects of Weiss-Tisman's article. 

He wrote,  "...the alleged killer, had Asberger's [sic] syndrome or some other personality disorder, it was important not to draw conclusions, or make assumptions abut [sic] other children who suffer from mental illness."  (http://www.reformer.com/localnews/ci_22212875/local-educators-respond-conn-killings)

Aspergers syndrome, following the publication of DSM5a to be known as an autism spectrum disorder, is definitively neither a Personality Disorder nor a type of mental illness. 

Persons with autism are in no way more inclined to violence than the average population; in many cases and in our own experience they are among the most gentle and emotionally empathetic people we know. In fact, persons with autism are significantly more likely to be Victims of violence than to commit it.
We support The Reformer's and all efforts to increase school safety. Our thoughts are with those who were impacted by Friday's terrible events. Let us be sure not to add tragedy to tragedy by perpetuating negative stereotypes around mental illness or autism. 

We ask that you publish this letter so that people in our community will not be misled into harmful and erroneous ideas about autism.

Sincerely,

[FSM, friends, family]

MILCS

I recently spent a morning meandering and gabbing with a beloved friend. As we walked along a magical, secluded trail, she showed me some special spots where her children play together. “We are here a lot because we can’t be in public right now,” she confided. One of her children is going through a period of strong tantrums and the effort and strain of it in the social scene is just too much. She admitted how ashamed she feels when her child throws a public tantrum and how her fear of getting caught in that situation has vastly limited her social life. How isolating it can be…Having read some of my experiences here (and heard about them in person and seen them in real life), she added, “You know how it is!” Oh yes, Mama, I know how it is.

This conversation reminded me of some instances when I had no choice but to be out in the world while my children were going through changes. Bleak times filled with helplessness, anger, sadness and humiliation for all…Happily, what also came to mind were the times when someone – often a complete stranger – gave me love, peace and strength just when I needed it.

Everybody knows what a MILF is, right? Well, I want to talk about MILCS: Mothers I’d Like to Celebrate. I don’t even know if some of these people have children…But they are MOTHERS, for sure. See if you don’t agree.

Once, Z was having a ghastly tantrum and I had taken her outside to avoid disturbing G’s tae kwon do class.  People kept walking by and either totally avoiding us or looking pityingly at the poor, poor little girl.  Poor, poor little girl was so angry (no idea why, this was a daily occurrence at the time…) that nothing I knew of (not hugs, not threats of Consequences…) would stop the screams of rage. I was near tears.

As I stood there, trying to shrink as small as possible while still indicating that the tantruming child had someone watching her (for what that someone was worth), a woman came up to me and said, simply, “Mom, you are doing okay.” She wrapped me up in her arms and rocked me a little from side to side and then went on her way.

Hey you, lady who just hugged a pariah, you are doing more than ok.

Oh, here’s a good one. You know when someone thinks your child with an attachment disorder has autism and that your child with autism is neurotypical, or vice versa? Yeah, that happens to me sometimes.

I was at this fantastic storefront Aztec-Mexican restaurant in Norwalk, CT called Molcajetes (http://www.ctbites.com/home/2009/9/18/los-molcajetes-seriously-authentic-mexican-in-norwalk.html) with extended family when Z threw one of her most remarkable, powerful tantrums of all time. Full Spectrum Grandmother tried to intervene and got kicked for her troubles…Pardner tried joking her out of it with no luck…

Over the course of the next [period of time, I am not sure how long!] or so I spent with my rocking, growling, kicking, screaming daughter out on the stoop, not one but TWO women with autistic sons walked by at different times and commiserated with me over what they thought was a textbook autistic tantrum.

“Oh no,” I told each kind mother in turn. “The one with autism is sitting inside eating nicely!”

When Z was good and ready she pretty instantly stopped being upset and went inside and, with a big smile on her face, devoured enough food (fresh, garlicky guacamole and soft tacos and just-fried chips with that incredible slightly sweet cabbage salsa) to feed an army, which is kind of what she was. You need fuel for that kind of sally!

When Z was younger, I often felt as if people judged me as a mother for her behavior. I wished I could maybe wear a sign that said, “This is not a normal tantrum. I have tried everything you (or I, or anyone) could imagine to stop this tantrum and many others like it. Yes, my daughter was just hitting me and screaming as if I was hitting her but I was not, actually, hitting her…, as you can see right here with your own eyes. In fact, your staring at us might even fuel this little situation we got going on here. Now, please, I just have to sit here and wait it out so I would be so grateful if you would stop giving me dirty looks.”

Now that Z is a little older, people can tell her tantrums are not just run-of-the-mill. They can see that she is older than a “normal” age for tantrums, and that she is writhing and screaming, extensively, without any input. They seem somewhat less likely to be appalled -- and rather more likely to feel compassion for both the parent who stands helplessly witness to such an event and the child who cannot extricate herself from it – or let herself be extricated...

G has his moments too, whether from his really rare but quite memorable public tantrums to his more common general inappropriateness/cluelessness, not to mention flailing.

One time, after a hard day, I said to G as we were leaving a local co-op, “You have the most important thing, a kind and loving heart. Now you just need to pay attention to the world around you and work on your common sense.” (This is one version of my ad-nauseam-aforementioned Pay Attention to the World lectures.)

We had gotten into the car and had just begun to pull out of the parking lot when a woman with a silver bob wearing a striking purple jacket and lots of chunky silver jewelry waved me down, practically throwing herself in front of the car. Thinking maybe I had forgotten one of my organic, vegan, sustainable, equal-exchange, wallet-straining purchases, I stopped and rolled down my window.

 “That was one of the most inspiring things I have ever heard,” she told me. “It will echo inside me for a long time. Thank you.”

No, thank you, Ms. Silver-Purple Angel-Person. I will never forget you.

I tell these tales not to brag or make it seem like I am doing such a great job that was duly appreciated by these wise women (ha!), but to share that these women actually made it possible for me to Go On. Their simple acts of generosity have resonated in my life for months and years. They allowed me the space and peace in which I could settle my heart back into love for my children instead of fear. They made it possible for me to celebrate my children, just as they are, and so I celebrate them.

Just so, I hope when my friend who is stuck in the woods for now with her clan reads this she will know how truly I honor her finding a way to celebrate her children through it all. In addition, I hope she will encounter surprising (yet very welcome) love and acceptance when she does have to put herself and her family “out there,” just as I did with these MILCS: huge-hearted strangers, generous-spirited everyday angels who just

Went For It.

And guess what? We can all – in some way - do the same.

We all have the mental capacity to recognize opportunities to grow our hearts, to stretch a little or a lot. Sometimes it seems like we don’t have the emotional capacity to execute such acts of kindness and generosity, whether it’s due to emotive stinginess (high on the fear spectrum, no?) or the shyness of those on the awkward end of the social spectrum. It’s probably easier to be surprisingly kind to strangers, as these women were to me, but we encounter countless such opportunities of all sorts every day. And I am not talking about the somewhat trite “random acts of kindness” trope, because these acts are more than random. They are necessary.

You never know when your small action may make a real difference in someone’s life. Plus, I suspect our capacity to be generous and kind grows with the PRACTICE.  Be grateful for any everyday angel you meet…and pass it on!

Lest this seem preachy, I should add I’ve no idea what a generous spirit means to you in particular and no advice beyond the suggestion that choosing kindness at a given moment may resonate more than you’ll ever know.

Thanks and love forever, MILCS, and all you others trying to make sure your heart isn’t several sizes too small, and all y’all who are just plain trying,

Full Spectrum Mama

 

Speech – III/Tools - II

In “Laugh Like a…” and “Gortles vs. Vocal Fry” I began to write about the Full Spectrum of speech expressed by my children and our family approaches to some of our challenges in that realm. These include, on the one hand, exceptional sassiness or dorkiness of oral interaction styles and, on the other, widely disparate levels of verbal agility.

Here are two more topics to consider: repetition and volume.

G and Z loooove to repeat. Single words, questions, quotations, astute observations, not-so-astute observations, random sounds…all are fodder for extensive repetition. This shared habit is rooted in two very different sources: G’s mind seems to get drawn into a pattern - he’ll blurt out a word or phrase from time to time, sometimes for days, as the neural impulse strikes; Z likes uninterrupted attention, which speech can bring, but she also self-soothes – and learns --with patter.

We use the same tool inclusive of these two distinct contexts. Since it works well in our household, it just might work in a wide range of families. I therefore offer:

A Good Rule for Parents and People:

1.     The One Time Rule

Things may only be said ONE TIME.  If something is repeated, Mama – often in cahoots with the currently non-repeating child – may utter the powerful phrase, “One Time Rule”…as many times as is necessary.

a.     The Awesome [or insert your dreadful trending word here] Rule

Each child may utter the word “awesome” ONE TIME per diem.

For some reason, this has worked. Good thing, because we have yet to work out the Consequences.

Partly because of low tone, G also has issues with volume modulation. More specifically, he speaks very, very loudly, especially when excited (and he’s an enthusiastic guy). His speech volume is probably the single biggest obstacle to other kids’ acceptance and comfort in his presence.

When we are together as a family, I might say, “Stop shouting in my ear,” “Turn it Down, please,” or “I am RIGHT HERE.” I don’t want to humiliate him in public, though, so we have devised a sort of turning-down-a-radio-dial type motion that is meant to indicate to him that he needs to try to modulate his voice to a quieter level.

Alas, unless he is looking right at my finger, he doesn’t notice this signal! My gesture, then, gets bigger and bigger, progressing initially to something resembling the “cuckoo” finger swirl and then evolving, as it widens, into a one-handed version of Jazz Hands.

In contrast, and no, I am not making this up just to, as it were, fill my proverbial Spectrum, Z has issues with speaking at LOW volume. Specifically, she prefers to speak At All Times, and so, if she has been asked to be quiet, she simply speaks much, much more quietly, typically in a very special language of her very own. This brings us to:

2.  The No Poltergeist Voices Rule

If your attachment disordered, or otherwise anxiously garrulous, or perhaps even happily loquacious child has not stopped speaking in approximately seven hours (years) and if he or she insists upon whispering “ZI-guh-sa-ba ZI-guh-sa-ba” over and over near your ear while you are on the phone for Three Minutes after Paying Attention to her or him the Entire Day (or some similar situation), simply invoke the No Poltergeist Voices Rule.

This might work.

Jazz Hands!

Love,

Full Spectrum Mama

Suite: Shorty Hedgehog Eyes

I. A List of Who Can Stand in Front of Me, and When

Z was holding a scrap of paper at pickup the other day. From a quick glance, I saw there was a dividing line drawn down the center of the paper, with ten or so names on either side. Underneath this was another line with two names below that one, and some numbers. 

“Whatcha got?” I asked, curious.

“A list of who can stand in front of me, and when.”

“Oh.”

II. The Sad Fairy and the Broken Fairy

We have an iron garden fairy with downcast eyes and a sad expression. She was a gift from a dear friend and has lived, with her friend Hunk of Rose Quartz, on a nice stump in our yard for some time.

We are preparing to move and I brought up the fate of the sad fairy with Z: “This fairy is so sad, maybe we should leave her here for the next people and then she will get happy.” Part of me thought maybe we’d be leaving some of our travails behind with the sad fairy.

Z looked at me with horror. “No, Mama! She wants to come with us! I will take very good care of her and find her a home in our new home so she will feel better.”

Although I’d considered abandoning her as well, I also packed up the painted resin garden fairy with the broken wing.

III. Hedgehog Eyes

“That seagull is a girl,” G announced.

“How can you tell?”

“It has the eyes of a mother.”

“How can you tell?”

“Well,” G explained, “it just has a certain expression. There is a look of love in its eyes. That’s ‘the eyes of a mother.’”

This, from someone who has a hard time telling similar-looking people apart – and who generally cannot read facial or body language, we-e-ell, verymuchatall. Traits which, basically, did not fall far from the proverbial mama tree.

The first night of being Z’s mother, I looked deeply into her eyes as I tucked her in. I have never been big on direct eye contact with adults but children, especially babies, seem to look through their eyes in non-threatening/-confusing/-overwhelming ways. Z’s eyes were unfamiliar, alien, so round and black that the first thought that popped into my mind was “hedgehog.” My second thought was, those are – beyond the shadow of a doubt -- the eyes of my daughter. They were bright and a little fierce/scared like those of a wild animal that might, with care, be loved into feelings of trust and safety.

IV. Team Good

On Election Night, G was goofing around at the dinner table, cracking himself (and Pardner and me) up with talk of “Demo-Craps” and “Re-Butt-licans,”(the finer implications of which I hope escaped him). Sometimes, though, G gets “stuck,” and he would not stop saying these words despite my telling him he was not using language suitable for a seven-year-old.

Z covered her ears and, with her clear, dark, never tame but perhaps increasingly civilized eyes, looked right into mine.

“That is not appropriate, G,” she announced, holding my gaze, “and I am not listening!”

Since I am Z’s primary caregiver, she focuses a great deal of oppositional energy on me. It was such an incredibly nice feeling to have a moment where I felt she and I were so clearly on the same “team,” a brief respite where she felt safe enough to let down her defiant defenses and join with me in an effort to give her shelter – even if that shelter was merely from a grody eleven-year-old.

I think she felt it too. Later, she wrote me a letter, “thak you for that diner” [thank you for that dinner] and signed it “love form shorde” [love from Shorty]. 

V. The Hope of a Mother

When glimmers of empathy and Do-Right shine through the daily power struggles they are a balm for the Full Spectrum soul.

Z showed me we have plenty of love and caring to share with every member of this forever family, even those of us who might be referred to as imperfect…or inanimate.

She’s showed me that although it may take a little longer than we’d like, a frightened creature can learn to trust – and that with that trust comes the possibility of walls coming down.

I’ve begun to hope that, in the fullness of time, Z will use her substantial magnetism and undeniable, very tall and large will for the sake of goodness and justice.

I leave you with this Emily Dickinson poem about hope. It often pops into my mind both when I feel hopeless, and, like now, when I feel the power of hope.

254

"Hope" is the thing with feathers—

That perches in the soul—

And sings the tune without the words—

And never stops—at all—

And sweetest—in the Gale—is heard—

And sore must be the storm—

That could abash the little Bird

That kept so many warm—

I've heard it in the chillest land—

And on the strangest Sea—

Yet, never, in Extremity,

It asked a crumb—of Me.

Emily Dickinson

Love,

Full Spectrum Mama

Crazy Carla & the Retards

A year or so ago the Full Spectrum family was having brunch with another couple and their children.  Other Couple had a son a little older than G who was neurotypical, “cool” and athletic but usually willing to accommodate G’s Pokemon obsession during family get-togethers.

Knowing we were to see this family, G had been planning for days which Pokemon cards he would bring to show Other Couple’s Son, a fellow he admired quite a bit.

When we showed up at their door, though, Son had a friend over. A similarly “cool” friend, of his own age. G—always wary of three -- immediately tore into an excited preventative monologue about Pokemon for Son. Son just as immediately announced, scornfully and for benefit of Friend, “I hate Pokemon.”

G’s little face crumpled.

There are kinds of valor that are not in history books, but that matter greatly all the same. Among these, we ought to include the bravery of a little boy who has just been dissed and dismissed and stands his ground there in the hallway.

“C’mon G, let’s go get some food,” I said, throwing an arm around him and pulling him toward the kitchen -- probably embarrassing him but making him to know he was very loved.

A little later Other Wife was showing me some renovations around the house while our husbands, Z and G hung out with the bagels.

“You know,” she confided, “This is really hard for Son.”

“What do you mean?” I asked, genuinely perplexed.

“Dealing with G being here.”

“What do you mean?” I still had no idea what she meant.

“When I was a little girl I had a cousin who used to come over and she was…well, like we used to say, ‘retarded,’ and it was very hard for me to be around her.”

I stood there, speechless. Was she saying that G, who has autism and is academically gifted, is “retarded?” Or that being around “retarded” people is terribly hard for the “non-retarded?”

I had been warned by several friends about this woman. They called her “Crazy Carla.”* Having been a victim of smear campaigns myself (small town viciousness, epic yoga world pettiness), I always try to give people the benefit of the doubt. I was aware from my own interactions with her that Carla was high strung, but I hadn’t seen the full extent of her possible “craziness” until now.

I couldn’t help but feel, though, that what she was saying aloud might reflect the way a lot of other people feel without giving voice to those feelings.

She backtracked a little: “I’m not exactly saying that G is a ‘retard’ but Son doesn’t know how to deal with having someone…like him around! So that’s, you know, really hard on him. I feel bad for him.”

Where I am at on the Spectrum, I have a really hard time expressing myself when I am overwhelmed by sensory or emotional input. After this statement, I literally shut down. I have no memory of responding in any way.

Retorts I wish had popped into my mind in a timely fashion:

“Really? Is your child reading Hawking?”

“Oh…I guess retards should be treated with disdain!”

“It’s okay -- G has a hard time with A-holes and I think he’s doing pretty well with it today.”

“Probably you should have just pretended your cousin didn’t exist! It’s very inconvenient when people are different.”

“You just made me want to die…for so many reasons.”

Or even -- but I was not and still am not personally enlightened and big enough for this one -- “What do you mean?”

We went back down to the kitchen. Pardner said later that my face was grey. We left after awhile.

I never said anything. Much like when people ask, regarding Z, “Is she your REAL child?” I feel like, if you really just opened your mouth and said that, what is there to say? I do – obviously! – believe in working with people whenever possible around accepting differences, universal equality, and so on. Nevertheless, there are people who are receptive to expanding their empathy and understanding and people who are willfully ignorant. (Please see Ann Coulter and http://www.change.org/petitions/ann-coulter-public-apology-for-constantly-using-the-r-word!)

There’s an argument to be made for reclaiming a word such as “retard,” too. Along with feminists (and others) reclaiming derogatory words about women, people of different ethnicities (and others) reclaiming disparaging words about their ethnic groups (insofar as such things exist in any clear way), Wiccans (and others) reclaiming the word “Witch,’ and so forth, certain individuals can and do lay claim to appropriating “retard” for their own positive purposes. That is a different issue.

In this day and age, there is no excuse for using the word “retard” about a child. None.

As for “Crazy,” well, most of my favorite people are a little nuts. Good nuts.

Love,

Full Spectrum Mama

* Crazy Carla’s name has been changed (the Carla part, not the Crazy).

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