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).

Comments

My apologies to all of you who are unable to comment. As far as I can tell all of my settings are completely open; but so many of you are telling me you "cannot prove you are not a robot" or other technical difficulties...I will keep trying to figure this out. Meantime, PLEASE email me your thoughts at jineffable@gmail.com if you cannot post the comment because of a blogger technicality. I will post them for you...

Poorly Behaved: A Context Spectrum

“Z, please come downstairs,” I called from the kitchen.

Since I was cooking dinner and not really paying attention, it took a few minutes to realize my daughter hadn’t shown up. Sharing in kitchen chores is something Z really enjoys, an opportunity for us to have plain old fun together, so I tried again.

“Z,” I repeated, perhaps the tiniest smidge more emphatically, “Please come downstairs.”

She came to stand near me as I bustled about.

“Sorry Mama,” she informed me, “I didn’t hear you the first time.”

Hmm.

“Well, if you didn’t hear me, “ I sputtered, “How would you have known I called you the first time, then?”

Blank look.

“Oh, never mind!”

“Normal?” Perhaps. (Although not in the autism area of our Full Spectrum.) In the context of the rest of that day’s events, this exchange emerges as one of many instances of survival-motivated behaviors that add up to an overall tendency toward evasiveness and, therefore, at least in our case, dishonesty.

How does one raise a child inclined to subterfuge? On even the most minor points, Z tends toward confabulation. That is, her disorder (for confabulation implies an illness, often dementia) inclines her toward making up whatever answer is most suitable to her needs. 

We have made some real progress with tantrums since the early days (see, for example, http://fullspectrummama.blogspot.com/2012/06/needhelp.html) but the more subtle matters of day-to-day integrity are an ongoing trial.

I was recently talking with my mother about why I haven’t really explored the online world of attachment disorders in the same way that I have those of autism and aspergers syndrome. I told her I thought it was because most autism sites seem to celebrate people’s differences while I feared attachment disorder sites would just make me scared or sad. I knew that they might make me feel less alone in our struggles, but I suspected hearing about other people being as hopeless and desperate as I have sometimes been would be depressing.

When I googled “attachment disorders,” the first site I ended up on was:

http://adoption.families.com/blog/a-letter-to-our-new-neighbors-about-our-rad-daughter.

I had landed on a link to a letter on a parenting site, from a mother of a child with an attachment disorder to her new neighbors. Her daughter was quickly forming intense friendships with people in her new neighborhood and this Mama was concerned about the healthy development of those relationships.

I know how she felt having to write that letter. When you have a child with an attachment disorder, sometimes you feel like you need to write similar letters, over and over, even to some of the closest people around you.

A Context Spectrum comes to mind: yes, I understand that sometimes {insert behavior} is “normal” (and, hey, maybe you are trying to make us feel better – thanks!) but in a context of {behavior}, {behavior}, and {behavior}, it is NOT normal. And to ignore it will NOT help, in fact it will almost certainly make things worse.  So please, dear {recipient of letter}, understand that we need to handle this in a way that might seem overly strict to you, but, beloved {recipient of letter}, trust me that you do Not know best in this context.

This letter-writing Mama’s daughter is, like Z, incredibly charming and engaging, and her mother is worried – for good reason – that her daughter’s interactions with neighbors may spiral out of balance in any number of ways.

Her letter most definitely touched a nerve.

I didn’t go to any other attachment disorder sites that day.

I had a vague idea about attachment disorders but assumed since I brought Z home under the age of one she would be unaffected by this illness.

The fact that I was unable to put Z down for a year or so (according to those with intact memories of this period [not including me]) without causing an unremitting stream of bloodcurdling screams to emit from her tiny mouth might have indicated that something unusual was going on. I attributed her neediness to her exceptional intelligence and sensitivity, as well as to her temperament, about which our guides in China had warned us. I can still remember “Rose,” standing at the front of our bus with a microphone, announcing with a big grin, “Since they are from Jiangxi Province, your daughters are gonna be Spicy!”

The contrast between the plump, smiling, radiant six-month old baby in the referral picture I received and the scrawny, closed-faced child of nine months and three weeks that I met was stark. What happened in those three months? Was it something specific, like hunger or abuse? Or was it just that my incredibly perceptive girl had noticed that something was missing? 

I thought that once I brought her home and fattened her up a bit that jolly baby Z would re-emerge unscathed. It hasn’t been that simple. Loving my vibrant, wonderful yet troubled daughter has not been enough to heal her – yet; and we have searched at length for therapeutic modes of discipline that will actually work.

When I first brought home my “first and best-behaved child,” Pancha, who happened to be a dog (Figure I), I resolved to never say “bad dog!” “Bad dog” just sounded so mean. Love the sinner, hate the sin! I decided, instead, to call her “poorly behaved” if she did something “bad.”

       Figure I -- The beautiful Pancha,* a.k.a. Sri Sri Sri Panchananda-ji, Gabooboogee, The Punk

Pancha joined my household when I was in the early years of graduate school and was living on a fellowship that only barely paid the bills. Every once in awhile – as in, every year or so -- I would buy something new to wear; slightly more often I’d indulge in second-hand clothes from the 96^th Street Salvation Army.

When Pancha was still a puppy, I purchased a precious, precious new pair of shoes. She promptly chewed them to pieces. I was devastated and determined to prevent such an event ever recurring. I put her on her back to show her who was boss and scolded her with a mighty wrath. She trembled, cowering and groveling in guilt and remorse. Except – as she cowered and groveled in guilt and remorse, she reached out with one paw and – dink, dink – played with a toy.

My daughter reminds me a lot of Pancha: brilliant, beautiful, vivacious, punk, very lovable, very hungry – and with a bifurcated mind. One part focused on pleasing Mama, the other (larger) on getting what she wants…Conscience? “Is still acquiring this skill,” as they say on Vermont report cards. My beautiful dog and my beautiful daughter: both quite good at aping respect; underneath that surface layer, both convinced that they should take control. It was cute in a small dog, in a small person it is sometimes disturbing.

Z doesn’t even do the fake remorse, groveling or cowering. If Z is found out in a lie or poorly behaved activity she is, not to put too fine a point on it, pissed. She has to be reminded, often firmly obliged, to say she is sorry.  The jury is still out on whether forced apology works on any non-superficial level or is an acceptable parenting tool, beyond the most simple and public of social situations (i.e., “Please apologize to that other child for cutting in line”). 

A wise aunt once told me, “Be careful that you don’t scold your child in a way that makes her begin to have a picture of herself as ‘the bad one.” I’ve tried to combine that with the notion of “poorly behaved” to manage Z’s disordered actions as actions per se -- and not character flaws. As I mentioned, we’ve made major progress with tantrums. We are down from multiples every day to an average of one or two real humdingers a week!

But Z’s general approach to life seems still to be one of pragmatic get-what-I-want-with-a-minimum-of-obstacles-ism. Despite my never using this word with her, when I ask Z why she did a given “bad” thing she will answer me with a shrug, “Because I am bad.”

                              Figure II -- Self Portrait by Z, casually left on the drawing table

During a Harry Potter camp last summer, the kids brought home stuffed owls and kept them in their windows. A mysterious “someone” would send notes every night (for a very long time, every night, until, indeed, the owls got very “tired” and “retired” to chairs and beds!). Over and over again Z received notes that affirmed her essential, innate goodness, in words she could understand: “Let your good heart shine,” “ You are so kind inside – don’t be afraid to let your kindness out!” and so on.

    

        Figure III – Drawing under the drawing in Figure II: slightly comforting in the drawing 

                           context spectrum, assuming she is the one with the wings...

Around this fall equinox I had a talk with G and Z about what the equinox represents -- the equal day and night hours, the meaning of equanimity, finding balance…

I shared that I felt like my teaching work had taken over all my writing and yoga practice time (please see http://whitewhine.com/) and that I felt out of balance for that reason. I asked them if there was anything in their lives that needed to be in better balance.

G replied that he felt that his life was in a good balance.

Then Z announced, “I‘m too bad. I’m going to stop being bad, just like I stopped biting my nails.”  (Her quitting a serious nail-biting habit is an example I always use for her to remind her of her strong will power.)

“Oh, Z, you are not bad,” I reassured her, “Sometimes you may do a thing that seems bad but that’s just because you are hurting inside.”

This is, after all, how I explain unkindness, cruelty, lashing out and general chumpitude to myself and to my son, on his spot on the Full Spectrum. I prefer this explanation to one of selfishness, and in Z’s case I believe it holds true.  It is my failure as her Mama that all my linguistic somersaults have not prevented my daughter from thinking she is “bad.”

Nor have my modes of discipline made much progress: Did Z stop being poorly behaved? Not quite yet.

Is not the fact that we both get to keep trying not one of the neatest things about life?

Love,

The sometimes poorly behaved but never bad,

Full Spectrum Mama

* Some haters may quibble with the word “beautiful” being used to describe my stunningly lovely dog. I have nothing to say to them.

1. 
   

Tasteless Autism/Immunization Joke

Did you hear the one about the mother who suspected she was autistic and so did not immunize her son so he wouldn’t “get autistic” too…and then he turned out to have autism* despite not being immunized?

That one was about my son and me!

I mention this partly because life cracks me up and partly because my dear friend Rachel, a passionate and loving advocate around autism (here are just a few of her projects: http://www.autismandempathy.com/ and http://www.journeyswithautism.com/) has sometimes been vilified in “the autism community” for being pro-vaccination. It seems difference (here, of opinion) is sometimes unacceptable, even in a community of people who have differences from the neurotypical norm, or have family members with such differences…

Concerns around immunization have been a force since immunization programs began; likewise, immunization has had an enormous body of supporters and has unquestionably saved many, many lives. Although I was trained in graduate school to read statistics – even quite complex sets – I cannot say from looking at the numbers that I know with anywhere near 100% certainty what the right choice is for anyone else in the autism/immunization debate. 

Nor does our joke-embodied story prove anything beyond its own scope.

But I do know for sure that being intolerant of others’ opinions is unjust.

I also know that a good laugh is often the answer, even if it doesn’t solve the exact question in question.

Love,

Full Spectrum Mama

* …and to be the most wonderful son in the whole wide world, according to his Mama, Just As He Is.

Curriculum?…Whatever.

Many of our friends and family members are educators, and many care intensely about what is taught in our schools. I myself am a teacher. So I feel a bit disloyal and even heretical saying this: as far as my own kids go, I don’t care, like, even at all about curriculum.

Actually, I had always planned to homeschool my children, but circumstances conspired to bring me one child who doesn’t necessarily want but desperately needs all the socializing he can get and one who would probably go postal within three consecutive days spent with Mama and without major social activity. For Z, adult acolytes will do in a pinch, but peer adulation and goose-stepped errand-running is preferred; for E, the biggest school lessons are ones he doesn’t necessarily learn at home: that while everybody is different, most people judge others for being different; that we can’t spend all our time reading; that people change their minds and plans change; how to "read" unfamiliar situations effectively…

                                    Figure I – Usefulness of Curriculum Excellence Pie Chart

As this scientific pie chart demonstrates, most learners benefit enormously from a thoughtful, organized curriculum.  I contend that my children, along with certain others such as perhaps some gifted students, or some with significant delays or learning differences, do not. It’s not that curriculum excellence always impinges on these students or is a negative thing, it just does not matter as it would for other students. My learners gain most from teachers of exceptional character and eagle eyes. So I don’t particularly care if they spend a day chasing caterpillars in the meadow or making 3-D models of the Green Mountains.

In my ideal world, time spent on curriculum development (not to mention test-prep – another post!) might well be used to consider and research how to teach contentment or generosity or ways to encourage curiosity.

However, in this reality, teachers don’t have that kind of freedom, regardless of whether they would willingly toe the Full Spectrum line. So I care that -- insofar as possible -- my kids have shining morning faces and don’t get dragged down by awful beastly kids or dreadful, serving-time-until-retirement teachers. 

G spends most of his time at home reading and learning thereby. At school, this direct absorption of knowledge is somewhat compromised by wide-ranging sensory and emotional overload.* In other words, much of his actual intellectual progress probably occurs at home.

Z isn’t too interested in books…yet. But she could efficiently extract all the necessary knowledge for an astronomical level of success from two potatoes, a rotten log and a maraca.

So, if not book-larnin’ and curricula, what can teachers offer such children?

What I hope for from teachers is:

1.     that they be kind, and

2.     that they model empathy,

3.     good judgment, and

4.     integrity; and

5.     hold an atmosphere where bullying is simply and absolutely not a possibility either for potential perpetrators OR victims.

Why?

1.     Kindness: I hope it is not too much to hope that the logic behind requesting kindness of elementary school teachers is a no-brainer.

2.     Empathy: Some non-autistic people SAY that people with autism lack empathy. This has not been my experience at all. G is the most softhearted person I know. I will say it is sometimes a stretch for him to understand what other people are feeling when his senses and neurons are feeling assaulted, but once G knows what's up he cares and understands and acts on those feelings. That is, he empathizes, often too much (so that his feelings become painful and he finds it hard to function...).  Z sometimes lacks empathy because she is in survival mode.  Teachers with healthy instincts for and expressions of this emotion offer lessons in positive, pro-social empathy that students can carry throughout their entire lives.

3.     Good judgment: discernment, moderation, discipline and common sense are elusive for G, optional for Z; as much as possible, they need to see them in action.

4.     Integrity: I want my children to see their most esteemed role models as people who follow their consciences and follow through on their word. In a classroom setting, this could be as plain as setting clear rules and consequences. When G kicked his cat because his cat knocked over his beloved fish’s tank and killed the fish, he felt guilty. I told him, “That was a natural thing to do – your cat will forgive you and you’ll do better next time.” When he told his teacher – a former Buddhist monk – about this incident, his teacher (in the context of an appropriate lesson for the whole classroom, in which many students apparently thought kicking a cat was funny) vehemently scolded him. I like that his teacher did this: he wasn’t trying to make himself popular, nor was he taking the easy, lame approach; he was speaking the truth as he knew it.

5.     No Bullying: some kids, like G, are more vulnerable to being bullied or, like Z, to being bullies. Both kinds lose in a chaotic classroom. When teachers hold the classroom space as a safe one, everyone wins. This fall, I finally had an opportunity to enlist Z’s strengths in a positive fashion. A little boy from her preschool had enrolled in kindergarten and right off the bat was getting bullied on the playground by some fifth grade boys. Z hasn’t got a bit of “victim” on and I knew that by her patronage alone, this sweet little boy would be safe. As well, her kindest instincts would be called into play in caring for this wee friend. Now I just hope those fifth graders are ok.

I spend my advocacy, that tacit, somewhat-limited leeway every parent has, on the above qualities. As long as teachers are decent people and in charge of the classroom we’re good. We have done very well so far – after all, why do people choose to become teachers? (Hint: it’s not the lucrative salary.)  I figure the clan can always learn “the new math,” but if their hearts are hurting that’s a MUCH bigger issue. 

Love,

Full Spectrum Mama

* Here is an example. At the end of fourth grade, G’s class had an end-of-school open house to share the students’ Native American projects.  There were So! Many! people in that classroom, and so many sights, bright lights and sounds to take in, that I began to get a migraine. Consequently, at this event, I could barely see people and when I could they made me nervous as I couldn’t even fathom or read what they were thinking and feeling in that context.  I had a compelling urge to flee.

Adding to that urge was the fact that G was wandering around aimlessly, talking loudly and constantly to anyone nearby without even looking at his putative listener to see if he was being heard.

Having cornered them in a relatively quiet spot, I asked his teachers, “Is he always like this in the classroom?”

“Pretty much,” they told me, with love in their voices, “Yes.”

With all due respect to G’s WONDERFUL teachers, HOW, then, can he LEARN?  I mean, I know he learns some stuff but there must be so much that is lost in the process!

 On our walk home that day I shared that being in that classroom was very challenging for me.

“Is it challenging for you?” I wondered, casually.

“Yes.”

“Is that why you talk a lot sometimes, and in a loud voice?”

 “Yes.”

 Having been so profoundly overloaded, I was daunted to realize that this is what G and all students and their teachers deal with every day. I am sure many – most -- kids are able to navigate such environments quite well, but G is not one of them.

Barring private school or a “separate-but-‘equal’” classroom for those with sensory and other neurological and/or emotional differences, what can one do to mitigate such overwhelming environments, with so many people, visual and aural and other stimuli, social and academic expectations to be met…??? How can students with sensory integration issues be effectively integrated in the classroom? If help is needed in the classroom, how can we de-stigmatize that help?

?

"Mom, try to find me!"

First, the corny bit: I walked into the ocean late this summer in a foul mood and, seeing how vast and impervious she was, had the tremendously novel idea of dropping my burdens into her salty depths. Then, crying and exhausted and overwhelmed and a little relieved, I sent out a prayer/question, “How do I live a life of peace?” The answer washed over me right away: “The way to live a life of peace is to live a life of peace.” I probably read this in a Dalai Lama book or some such but still it actually sank in at that moment.

The answer was simple, maybe obvious, but, for me, to truly feel it was revelatory. As an erstwhile yoga student and teacher, I have often noticed how many times we humans can hear the same thing but never really listen. One day, if we are lucky, we actually hear a teaching – “Listen to your breath,“ or “Relax your diaphragm or “Let go”…”  – and it’s, um, deep.

So of course I then thought to ask ANOTHER question, because I am greedy like that. “Okay,” I conceded, “That’s a great idea, but just how exactly do I ride the waves of my amazing yet zany life?”

“Ride the waves,” came her reply.

Now it’s good old back to school time and the waves are in full force. G hearing me say “It’s almost time to go,” and slipping his sneakers on the wrong, sock-less feet and running out the door in his underwear and pajama shirt, Z making her teacher wait an extra ten minutes at the end of the day because she is “helping” her friend pack her backpack and making sure she, Z, is in total control.

At the end of each day, I try to sort of gather together the turbulences – good and less-so -- of the day and settle the clan into a smooth, peaceful sleep.

First comes Z’s bedtime routine. Since she has excellent executive function, she can be given ten steps at once and she will follow them -- efficiently and in order. She might potentially add two or three nefarious and unwanted (by parent, teacher, etc.) steps as well if left to her own devices, but she can keep lots and lots and lots of instructions and information in order in her mind. She needs no prompting to follow an impeccable bedtime routine in which all the right parts get cleaned, voided, brushed and rendered ship-shape.

Yet putting Z to bed is sometimes an unhappy time, a time of struggle. Most days, worrisome and/or upsetting behaviors have occurred and I wonder if I should process them with her at bedtime.  As I am tucking Z in, I may remind her of certain things I am trying to teach her. Just as many social rules that seem obvious to neurotypical people do not seem naturally clear or obvious to people with autism, Z, as a small person with an attachment disorder, needs help navigating the ethical universe most people try their best to share.

I might tell her, “You need to follow the same rules as other students, like when it is time to leave the classroom everybody leaves together,” or “During school it is a time to listen and respect your teacher.” Variations on the phrase, “Telling the truth sometimes seems harder than lying but in the long run it’s a better thing to do – and you will get in less trouble, too!” are frequent contenders for this nighttime slot.

I always try to remember to add, “Tomorrow will be a better day,” especially on the really rocky days. After all, hope is so important! As defeated as I may feel, I also try to sing her a song, sometimes a very short song, and give her a kiss. Then I escape before she can get me with “puny arm!” (If she puts her [puny] arm around me I pretend to fall asleep.)

I know rationally that the primary caregiver is the one with whom the child with an attachment disorder displays the most reactivity and testing. Some nights, though, I desperately wish we could just snuggle, that my snuggling wouldn’t feel like it was transcending another rough day, that it would just feel simple.

You know, like living a life of peace. *

As Anne Morrow Lindbergh says, in Gift from the Sea, “Don't wish me happiness --

I don't expect to be happy all the time...It's gotten beyond that somehow.

Wish me courage and strength and a sense of humor. I will need them all.” With this daughter of mine, how I pray for courage and strength and – above all - a sense of humor.

Then it is bedtime for G. G does best being told one to three (max!) steps at a time and is very literal. His bedtime routine requires some oversight to make sure he enacts the most basic aspects – brushing teeth, using the toilet…Order of direction is important, too: he will not think twice about taking his fluoride pill before brushing his teeth, for example, if that’s the order in which they are mentioned.

After he gets ready for bed, as I am walking into his room, G often runs in, leaps into his bed, pulls the covers over his head and shouts, “Mom, try to find me!”

”Mom, try to find me”??? I am sitting on the edge of your bed, from whence your voice is clearly issuing!

I hate when he does this. It makes me catastrophize and project that he will never, ever be able to be all right on his own.

But on this particular night of which I write, the night of the leaving-the-house-in-underwear day, I – as usual -- laugh and tickle him and cuddle up to tell his nightly story:

Once upon a time, there was a brave and noble knight named Sir G-ahad, and he was known far, far across the land for saving unicorns, and seals, and anything else in need, and for being a little bit different, and for being brave and kind. [All of his stories start in this way.**]

One day, as Sir G-ahad was sitting in the court at Camelot, a beautiful Princess came running in and cried, “Sir G-ahad, Sir G-ahad, a terrible dragon has stolen my unicorn!!!”

Then she looked at Sir G-ahad and started laughing because Sir G-ahad was in his underwear and a T-shirt and the shirt was tucked into his underwear. AND he was wearing his noble knight boots on the wrong feet and without stockings! The Princess was laughing so hard she lost her faith in the brave and kind Sir G-ahad and left to find another champion for her cause. [G looked very sad as I told this part of the story.]

Well, that Princess searched far and wide and no knight was able to help her, though many tried and failed, because no knight was quite as brave and noble and kind as Sir G-ahad. Finally she returned to Camelot, and found Sir G-ahad at the round table wearing a more normal outfit.

“I am sorry,” the Princess told Sir G-ahad. “I think I have learned my lesson that I should never have judged you because you were a little bit different.”

“You were right in a way too,” admitted Sir G-ahad. “A knight should pay at least some attention to his noble attire.”

That said, Sir G-ahad set off on his noble knight steed, Corny the unicorn, found the terrible dragon, drew his mighty sword and – lickety-split -- the dragon ran crying home to his Mama.

And everyone said, “Thank you, Sir G-ahad. You saved a unicorn…again.”

I sing him a little song and eventually start to get up. G grabs me and almost knocks me out with a headbutt from his giant, rock-hard head.

“Oh, G,” I groan. “Can you please try to be more aware of where my body is?”

“I don’t know,” he says.

Fair enough.

There’s a lot I don’t know too. Our Full Spectrum runs from the gifts and challenges of aspergers to the wounds of -- and efforts to heal -- reactive attachment disorder. Before either of my children had a label, I spent even more time feeling tumbled in this ocean of parenthood. A lot of parenting advice besides

1.     Love your children, and

2.     Be consistent

is useless in my situation. At least now I know why a lot of the standard stuff doesn’t work  -- and a few things that do, thanks to the insights that came with those labels. Now I also know “ride the waves” and “live a life of peace,” which feel like they can be applied to just about any situation if I can remember to do so amidst the unruliness of daily life.

Waves, try to find me! I’ll be hiding under this here Living a Life of Peace blanket,

Love,

Full Spectrum Mama

* Joke.

** Z gets the same format: her chivalrous deeds are done under the banner of Sir Shawty.

Autoimmune Disorders and Autism

As some of you may know, I have recently been definitively diagnosed with rheumatoid arthritis, the actual symptoms of which I have been experiencing for at least the last eight or nine years. Well, take a gander at this article, which totally blew my mind and really, what can I add except to say this makes sense to me on about a gazillion levels:
http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=1&src=me&ref=general
Love,
Full Spectrum Mama

A Summer Idyll, Full Spectrum Style

This little vignette shows how Full Spectrum parenting is full of teachable moments...for Mama!

We have a decent swimming hole about five minutes’ walk from our house. We went there the other day when Z was just in a mood. Mama was not in the mood for this mood. 

So it wasn’t a great combination.

As G swam happily, Z threw sticks into the muck of a small rock pool and shot copious gratuitous dirty looks my way. I jumped in and joined G for a while, trying to enjoy myself despite one-third of our party being in a snit, and then slid out and approached Z.

“If you want to go swimming, now is the time,” I remarked.

From the water, G made encouraging river otter sounds and tried to make Z laugh.

She ignored him.

I am always hoping these two Spectrum opposites can be “therapeutically” complementary to one another. Z might help teach G how to relate to someone who is socially savvy (for instance, getting him accustomed to mild, good-intentioned ribbing); or G could show Z that being generous (i.e. taking the smaller piece of pie) isn’t a sign of weakness. Sometimes it feels like quite the opposite is occurring. At the river, G was being sweet and blatantly making himself vulnerable to rejection and it wasn’t swaying Z’s tough stance one iota.

My Great Grandmother Noni, a widowed mother of a huge family and a fantastic and irreverent and loving woman, gave her children the following sage parenting advice: “Don’t see everything.”

I had seen Z’s sourpuss and her unwillingness (inability?) to respond to G’s overtures and I just couldn’t take the rudeness.

“In this family we treat each other with kindness,” I snapped. “Period!”

As Black and White and Spectrum-y as I can be, I have to wonder whether some of the moral boundaries I set for my family fit the individuals concerned.* I am always telling G, “Use your most powerful [pokemon-style] move: Ignore!” when he feels that Z is tormenting him, yet here I was denying her the right to this mighty move – and big-time incapable of it myself! Maybe the kids were learning from each other in ways that weren’t so obvious to me; maybe I should have simply accepted – “not seen” -- the interaction and, as Noni’s son-in-law (my Grampy) used to say, “Leave it lay where Jesus flang it.”

Is it true, as a dear friend recently told me, that for parents the acts of holding a moral center and loving unconditionally are irreconcilable? If so, which do I value more?  As with many in my raised-by-busy-boomers generation, I felt at times a dearth of both in my upbringing.  Am I now, in attempting through the ways I treat my children to right certain wrongs done to me in those realms, thereby inadvertently creating other wrongs?

In a word? Yes. (At least becoming a parent sometimes helps us to better understand and empathize with our own parents!)

Home we walked, Z stomping and screaming the entire way. I could not carry her, because I was walking her bike. G, though, was on his bike, and I very reluctantly let him ride away from the ruckus. Since Z’s walk-yelling slowed us down, G got home maybe four minutes before we did.

He awaited us at the very edge of the driveway. Hesitantly, looking slightly uncomfortable, G asked, “Did that woman give you my message?”

“What do you mean?”

I looked over at my filthy car: “Help, my Mama is gone” was written in the dust on the back hatch.

But Z was radioactive and I needed to get her inside. A public tantrum can be remarkably depleting for all concerned. Safely in the house, she proceeded to glower her way through dinner. She lost the privilege of dessert after refusing to respond to basic queries and jovial repartee. After several further chances she also lost the popcorn, DVD, and nightly reading of Harry Potter privileges and was banished to the bathroom to prepare for bed. Which she also refused to do. As I was lifting her onto the toilet in the hope that she would deign to use it (channeling Xiao Chuan Ayi all along: “You know what? Now I am going to have to lift your body onto the toilet,” stated very, very dispassionately), she pulled hard at my thumb and I heard, through the din, a ripping sound.

Z had torn a ligament in my thumb.

Funny how one can painstakingly remove oneself from all sorts of negative situations and then find oneself feeling violated by a small child in the home that houses you both. As Z gets older, the violence of her tantrums is increasing, along with her capacity for destruction. Still, there is hope here: she seems to be gaining more security and so is tantruming somewhat less frequently while enjoying more healthy reactions overall.

I can imagine a time when Z will have learned to calibrate and refine her social persona to the point where her behavior – at least in public -- is entirely ordinary.

As for G, I am not so sure. It turns out that while he had been waiting in the driveway for us to return from the swimming hole, he had run out into the road and flagged down a car to tell the (female) driver that his “Mama had disappeared,” and asked her to “please, try to find her, and tell her that I am looking for her.”

In subsequent conversations G admitted that his actions had not made a lots of sense, considering that he had seen me mere minutes before at the swimming hole and had known Z was having a colossal tantrum. He just could not put all the relevant information together through his anxiety. Perhaps this was a Theory of Mind** Moment.

Come to think of it, a woman had slowed way down and peered at me in a strange way as we were walking home.

And here I’d thought she had given me the look because of my beet-red, wild-haired, screamin’-like-a-banshee daughter!

Love,

Full Spectrum Mama

*  I love this quote from The Autism Revolution, by Martha Herbert, MD, PhD with Karen Weintraub: “I’d rather spend time with someone who is interested in me than someone who is trying to fix me or always telling me to do stuff that doesn’t make sense” (p. 162).

** Theory of Mind is a philosophical/psychological concept that is sometimes used by neurotypical theorists to describe some expressions of autism wherein an individual may be – or seem to be -- unable to project or attribute mental states beyond his or her own to others.  Here, one might say that G was unable to conceptualize where we were if we were not at home with him  (as we should logically and historically have been). This theory, though, can be turned around to accuse neurotypical people of not having a Theory of Mind that would fit in a more autistic-centric world…

If you do go to this link, please read to the bottom of the autism part, where you will find a more nuanced view:

http://en.wikipedia.org/wiki/Theory_of_mind