Shifting Gears – Part I

Once upon a time there was a little boy who took several years to learn to ride a bicycle. When the young lad finally gained this important skill, he was as proud as can be. A year later, he graduated from the small, low-to-the-ground bike on which he’d learned to ride to a tall bike that had formerly belonged to his mother. As he began to master this grownup bike, he became interested in shifting gears. However, his Mama and her Pardner thought it best that the enthusiastic fellow learn, first, to use the brakes and steer the ve-hicle.

Though the boy dreamed day and night of attaining this prestigious skill, he waited unwearyingly until the sharing of the Secret of the Gears would be allowed.

It came to pass, before the lesson of the shifting of the gears became appropriate, that the young lad went away from home for the first time on a 5-day class trip to a wonderful science camp.  Upon the morning of departure to this far away land, his little sister refused to play or speak with him. So deep was her pain at his leaving, that she found herself unable to even bid her brother adieu.

However, shortly after his departure, the girl child was overcome with the knowledge that she had her family all to herself and, forthwith, began a campaign of demanding, and then basking in, undivided attention and adoration. 

Much fun was had, and many “special” outings were undertaken as consolation. Among these, the little girl – who’d learned to ride her bicycle in a trice– was taken on a long bike ride. During this adventure, the family encountered a mighty hill, and the young lady was in need of assistance. At this time, her noble stepfather inadvertently taught the lass to shift gears.

Alas, how could this have come to pass? For the young lad would be most heartbroken should he learn that his little sister, four years younger and light years more physically adept, had been taught the Secret of the Gears before him. The unfairness of this deed would have, as the parents knew full well, filled him with devastation.

And so the parents endeavored to convince the little sister of the importance of not telling her brother that she had the Secret of the Gears without actually asking her to lie to her brother. Many twistings of the tongue and brain, such as the classic “We are not asking you to keep a secret from your brother and yet we feel that it would be best if you did not bring up this matter” were shared with the young Bike Princess by both elders.

Finally, the day of the young lad’s return was upon them. With great joy and anticipation, his Mama and sister awaited him at school pickup. They lovingly loaded his stinking, filthy trunks into the car and sped home for a feast.

Brother and sister alighted from the car and swiftly approached the house empty-handed, apparently anticipating twenty minutes’ “screen time.”

The door, however, was locked, and so they sat upon the deck and conversed, while Mama, having alone shouldered the burdensome baggage and several other items including her capacious mombag, shuffled toward them in an ungainly fashion.

Suddenly, great cries of grief and rage were heard from the land of the deck, for, during the very first moment alone she had with him, the Bike Princess had foisted her knowledge of the Secret of the Gears upon her brother.

Now, some people hear this story and laugh, some shudder or even cry. That is what Part II will be about.

Love,

Full Spectrum Mama

DIFFABILITY

Something tells me I am not the first person to be bothered by the “disability” label. I know it is useful in a variety of ways in terms of access and services, and that many do embrace it. Just – two quibbles:

First, as far as I can see, it is entirely too broad and general, encompassing people whose differences are so disparate as to be entirely unrelated. People with schizophrenia and people with paralysis. People with Down syndrome, people with Marfan syndrome and people with Asperger syndrome. Tourette’s and wounded vets. Environment. Fate. Genetics. Intellectual differences, emotional differences, physical differences…

Hmm. Sounds like…people.

Second, the term overlooks a crucial fact: that people with “disabilities” often have extraordinary abilities, some compensatory (the blind using other senses more effectively, for instance), some attendant to the “disability” (say, “savants” with autism or an olympic para athlete), some simply random or hereditary.

Again, what does this sound like? People?

So, while one could certainly say that a person with cerebral palsy is lacking a certain degree of mobility, one could also say that the person who yelled “Go back where you came from!” to my Chinese American friend and daughter when he almost mowed us down with his car was also lacking something most individuals might hope to share in a best case scenario.

Matter of fact, I can think of some fifth graders who are lacking a modicum of whatever car-slur dude was lacking.

Dear reader, you are probably tired of hearing this, but I do so wish the majority of people shared the exceptional openheartedness and kindness of my son, who happens to have autism. That they do not seems to me more of a “disability” than his.

I am not suggesting we throw out the useful aspects of disability as a category or identity.

Nevertheless, for general use, isn’t there something better?

After all, we are ALL “disabled” in the areas in which we struggle, and enabled both by the areas in which we flourish and by those aspects of our individual being that our cultural and social environments generally support. We all more or less successfully make all sorts of accommodations for differences and “special needs” (our own, and those of others). We blunder through all sorts of ill-fitting situations. We celebrate, ignore and denigrate myriad manifestations of the unique in equal measure.

The term “differently-abled” is so, so ungainly. Diffabled for short? A quick google search reveals I am by no means the first to think of this term, but it is one that bears disseminating.

It’s a great label – for everyone.

Love,

Full Spectrum Mama

The Finding Fairies

I dedicate this post to my Gram, Merlin Lorene Cunningham Shaffer, 10/20/17-5/22/13. The giant rocks on her tiny fingers from her adoring husband were the LEAST spectacular thing about her. Love you, Gram.

Z has a history of jewelry…interest.

So, when my favorite talismanic rhinestone necklace disappeared, I had a pretty good idea of the perp. I also knew it would do exactly zero good to question said individual. Like, have you ever tried to convince a narcissist of something that doesn’t fit their view of reality? Or tried to get your Tupperware back from – oh, wait, you don’t know her…

Z is the most convincing person you may ever meet. Unless I have 100% conviction to back me up, I don’t even broach any marginal subjects.

In fact, I almost took her to have her hearing checked out because girlfriend is so convincing she doesn’t even hear you if she isn’t tryna hear what you are saying. Over the course of several days her ignoring me and then saying, casually, “Oh, sorry’ [but being, definitely, not sorry] happened so frequently that I became concerned. Schedule a hearing test? Sure, until I realized she was testing me. Cheeky.

Had I asked her about my necklace, the conversation would have gone like so:

“Say, Z, you haven’t seen my special blue sparkly necklace have you”

Wide-eyed: “No.”

[Possibility that cat has batted necklace behind shelf enters mind of mother.] “Okay.” [Result: Daughter knows Mother is not omniscient.]

For contrast, let’s examine an interaction wherein FSM knows the facts with certainty:

The setting is the walk home from school last Friday.

Z announces, nonchalantly, “Mama, Mrs. S said we should tell our parents we are supposed to go to pizza night tonight.”

“Oh, really?” I query, knowing that the event in question is entirely optional – and geared toward the upper elementary classes. “Should I speak with Mrs. S about that?”

“Well, she didn’t really say…I’m not sure what she said, exactly.”

“Did she say you should go to pizza night?”

“…No.”

Did she feel like she was telling the truth when she told me what her teacher said? No. Z admitted she hadn’t been thinking about that (truth), just wanting pizza.

We don’t want our families to live in a climate of suspicion. This is a struggle when a family member has an attachment disorder! I do want to show Z, though, that lying is something that will be discovered and is not an effective means of communication. So, in this sort of context (grey areas of truth) I only want to ask her questions to which I basically know the answers. I don’t want to teach her that she can successfully fool her mother and take things with impunity. 

Also, gimme back my necklace!

Ahem.

Not only was this necklace Most Spectacular, it had been given to me by Swan Ayi to remind me of her friendship during a thorny time. I’d clutched that necklace through a series of “Clutch Pearls!” moments, trust me.

                                            Figure I – Most Spectacular Necklace (circled)

I searched far and wide. I can find anything at any time. Because my house is soooo clean. Not.

It is tiny, though, so there’s not that many places to look.

One day my precious necklace suddenly appeared on my (locked) closet floor, where it had decidedly not been before – and precisely where it might have been slipped under the door by small fingers. 

But, meanwhile, we’d begun a conversation about the existence of “Finding Fairies.” Z’s eleven-year-old brother contends that, “fairies aren’t real, except the tooth fairy,” but we gals felt pretty confident about these FFs.

I decided to do a little experiment.

Z wrote a note to the FFs about my necklace and how it had disappeared. We put it by her bed with some little gifts – flowers, sparkles, etc. The very next morning, there the necklace was!

What does this all mean? Like some other Z/truth conundra, this feels like a grey area I am unqualified to elucidate.

The whole thing, though, did feel a wee bit…fun.

Confrontation avoidance? For once not feeling obliged to Lecture? Something about magic and second chances?

Love,

Full Spectrum Mama

Oh, Thank God, YES!!!!

Not long ago, I ran into someone I vaguely recognized at an event the children and I were attending. As we purchased tickets, I remembered that we’d met maybe six or seven years ago and that she’d had a son who at that time was being evaluated for some differences. G hadn’t been diagnosed with autism then, but had been tentatively labeled as having a Sensory Processing Disorder (SPD). *

With G and Z sort of doodling around behind me, I initiated a brief conversation with this woman:

Me: ““Hi. You’re blah blah, right? Yes, I think we met over to the blah blah when our boys were little…”

She: “That’s right! How have you been?”

Me: “Great, thanks. You? Do you still live on xyz street?

She: “Yes.”

Me: “And didn’t you have a son with asperger’s or something like that?”

She: “Oh, thank god, no!”

CRINGE.

I look around immediately, furtively to assess damage. G’s back is to me, uncharacteristically still.

What do I do????

First, I say, helpfully, “Well, I do. Have a son with asperger’s. He’s really great!”

“Oh…Sorry!”

Awk-ward.

“Yeah, um, no problem. Really, it’s…great…See ya…”

Next on the agenda? Make a list, of course!

Why I thank whatever forces in the Universe brought me this child who is the best kid (boy division) I have ever known (abridged version)

He is super-kind

He always tells the truth

He is generous

His attempts at eye-rolling show just how little of a real eye-roller he is

He is goodhearted

He is selfless and has no guile whatsoever

He doesn’t care what people look like

He doesn’t care what people have – money, status, possessions

He loves his teachers and makes them feel extra-appreciated

He is a gentle warrior for justice

He would never intentionally hurt any creature, except in self-defense or defense of another

He loves animals for the whole, worthwhile beings they are - with all his big heart

He always does what he says he is going to do

He always has good intentions

As they say, “If you know one person with autism, you know one person with autism.” But I can safely say that ALL the people I now know with autism – though they are as different in size, shape and temperament as any other bunch -- share these traits.

Well, some of them may be better at eye-rolling than G. But not much.

A dear friend recently shared a blog post with me where a mother was expressing her anguish about her child’s SPD* diagnosis (http://www.scarymommy.com/somethings-not-right-with-our-boy/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+ScaryMommy+%28Scary+Mommy%29) .

Sure, anguish is a piece of the autism/difference picture  – but for me (and most other people I know with autism and parents of children with autism) it’s anguish about how the neurotypical world will treat us/them, NOT about the “condition” itself!

I’m not saying this discrete anguish is wine and roses, baby -- it can get you down. But it is separate – at least for me – from feeling that something is WRONG with my boy (or me, or my friends, or their kids…). 

For many of us, getting through the diagnosis and labeling morass, and, dealing with well-meaning and/or thoughtless ignorance are the grueling bit.

Not the autism.

And so I say unto you, Praise the Universe, YES, I do have a child with autism.

Love,

Full Spectrum Mama

* Sensory Processing Disorder is generally related to the autism spectrum, although not considered on it per se. These two neurological conditions may co-present in some individuals.

The Incident of the Overactive Extrapolator – Catastrophizer

Many moons ago I speculated that we each possess a certain level of reactivity, and that this reactivity is often exacerbated by parenting. I further postulated that there is a hitherto undiscovered gland that modulates this function, and, being its discovererer, named it the Extrapolator–Catastrophizer Gland, or ECG for short.  (For further information, please see http://fullspectrummama.blogspot.com/2012/04/would-you-ratherii.html .)

Well, I recently discovered that mine is pathologically enlarged. How refreshing! This gives me hope that it may, in the fullness of time, subside!

The incident went as follows: G reported that the daily question in morning meeting was, “What do you not understand about other people – and what do other people not understand about you?”

I asked what his answers had been.

To the first question, my Mr. Literal had responded, “I don’t understand why people say obvious things.”

Uh…hmm.

And for the second?

“People don’t understand why I like to make weird noises.”

“Yes,” I agreed. “That’s probably true. I don’t mind them except when you get loud sometimes. But yeah, kids might not understand some of the sounds you make or why you make ‘em. No big deal.”

“Also,” he went on, “people don’t understand why I…why…I…”

A lifetime passed during which my heart broke, my nervous system went into fight-or-flight mode and I mentally outlined a long, putative blog post about this interaction.

“People just don’t understand why I…like stink bugs.”

                                                    Figure I – My ECG at time of Incident

                                                            Figure II – Appropriate ECG

Love,

Full Spectrum Mama

Holding Hands

                                                 I. Far From the Tree:

For a variety of reasons, it wasn’t until my second year of college – when I fell in with a diverse bunch of women from intact families who remain among my closest friends - that I realized that many families are happy ones. Oh, I don’t mean perfect, but…in the balance…happy.

In retrospect, in a very real way it was I who caused the unhappiness in my family unit. Perhaps if they’d had the knowledge we now have around neurological diversity and Asperger’s syndrome (I know, I know, autism spectrum disorders), they’d’ve coped better with my obsessions, my ideas about justice and fairness, my literality and hypersensitivity.

My teen obsession with King Arthur, Queen Guinevere and the Lady Morgan le Fay made me think I lived not just with the wrong family but in the wrong era. What I saw as truth, honor and nobility was called “judgmental” or “black and white thinking.” I informatively let my family know, on the regular, what I thought of their [normal, neurotypical] values.

With more knowledge of differences my family might’ve known how to address my deep feelings of betrayal at the alarmingly wide variety of turns of events that felt to me like lies and injustice:  if people didn’t do just what they said they would, or bent the truth, or acted unfairly, or didn’t get the right consequences for misbehavior I was devastated. But they didn’t, and we weren’t – happy.

We weren’t a natural match.

By now, most of us in my family have figured most of this stuff out [Hi mom! Not your fault! Different era!], but as Andrew Solomon shows at length in Far From the Tree: Parents, Children and the Search for Identity, families with major internal differences struggle to accept and understand each other.

Which brings me to my daughter. I habitually find myself thinking as to how we’d be one of those normal (-ish) happy families if only Z would just stop acting out.

Having been the “problem” in my family, I never want my daughter to feel that way – consciously or unconsciously.  I am sure she does, though. Here is one little way I am trying to change that.

II. Holding hands in the past:

Typically, we’d be walking along and Z would grab my hand in what felt like a slightly aggressive way (maybe I’d be holding a bag or package, or have my hands clenched together for warmth, or in my pockets), because she’d decided she wanted to hold hands - pronto.

Then I, wanting to be a good therapeutic parent, wanting not to be manipulated (because that makes children with reactive attachment disorders feel scared, out of control and obligated to get even more manipulative), would remove my hand from hers.

After awhile, I would take her hand back, in an effort to show her both who was in control and that I was happy to hold her hand. 

That was our sad little pattern. It felt pathetic, like I was/we were circumventing “natural” love and interaction with a series of control-related scenes, vignettes of mini-failures of affection.

We went along like this nigh on a couple of years ‘til I finally had a bright idea…

Solution? Grab her hand first.

Sweet.

III. Holding hands now:

The funny thing is, the more loving I am able to act in our relationship--  in this case essentially via pre-empting Z’s demands -- the more I feel…loving!

As with my revolutionary (to me) hand-holding paradigm-shift, this loving-revelation might be a real “duh” sort of insight for some, but for this Full Spectrum parent very little is obvious. So much interaction is attributed to what feels instinctive, or comes “naturally,” yet I don’t believe in my heart that such reactions are based merely on genetic relatedness – or the lack thereof.

And another thing: People often assume I know what the “difference “ is between how one feels about a child who was adopted and a child who is biologically ones “own.”*

I don’t.

How can one distinguish between the love one feels for one’s children except insofar as it relates to that child, that person, as him- or her-self? I love each child with my whole heart, as anyone loves anyone they truly love…

What I do know: it’s challenging to parent children with autism and children with attachment disorders for very, very different reasons. It definitely makes you feel ALL the feelings.

As to the rest, there are only more questions: What if my child who was adopted had autism (somewhat similar to me) and my biological child had an attachment disorder (relatively dissimilar to me)? Would I still have the same reactions - the same instinctive understanding and empathy with G’s autism; the same chagrin and desperation around Z’s attachment disorder?

For clues, I look at the way people react to each.

With G, some children are cruel, or merely “tolerant;” the occasional adult is an ignorant so-and-so; mostly, once people get to know him, they see his huge heart and adore him.

I see that some of Z’s peers are intimidated by her; but most charmable humans are charmed by her and, eventually, yes, adore her. 

As the major players in Z and G’s lives know, spend a lot of time with either child and you will encounter exasperation. The more attached Z becomes, the more she may test that connection; and G's listening and focusing skills are "developing at this time" (as they say on Vermont report cards). Chances are the adoration will continue apace. Plus, occasional exasperation with children is…normal, right?

It’s hard to imagine Z would ever be compelled to pluck my hand away from what it is busy doing because she wants to hold hands Right! This! Instant! if she’d been in my arms from birth. It’s taken longer to bond with a daughter who can be aggressive (powerful) and manipulative (perceptive), than it did with my son, a helpless newborn in the NICU.  What love has grown, though, is profound – perhaps the more so for being hard-won.

Every time I grab Z’s hand first it gives her some extra sugar and gives me hope, and, as Solomon says, “Hope is the engine of social changes that mitigate disability and difference.” **

Funny how that works.

Love,

Full Spectrum Mama

* Grrr.

** http://www.farfromthetree.com/hope

“free messages would you like one?”

The other day, G came home with this question taped to the front of his shirt:

                                        Figure I – “free messages would you like one”

We live in a crunchy-granola community, wherein students and teachers are liable to offer a little shoulder rub when someone looks down. G got quite a few after the whole popularity imbroglio. Then, after G’s class began to directly address inclusion issues (and people had begun paying a little more attention to the more marginalized kids in class), G had begun to offer shoulder massages on his own, probably as a known method of connecting with other students. He was recognized as being pretty good at giving these mini-massages and decided to engage in a little self-promotion, as above.

Giving massages brought G some social acceptance…so much so that he thought it would be a great idea to advertise on his own body.

I worried, seeing that sign, that G was following a course I chose early on of substituting acceptance of my generosity for acceptance of me as a person. We Spectrumites often have porous boundaries, and when we opt for giving, takers may abound.

Nevertheless G seemed really happy, said he had a lot of people who “let him” give them shoulder rubs.

His teacher apparently told him he might have a good career as a massage therapist, but G objected, stating that his chosen career as a marine biologist was more important.

“But what about the good you could do for people?” his teacher asked.

“Who needs help more, people, who can help themselves…or seals?” G responded.

Please let me know if you need a message – I can get ‘em for free.

Love,

Full Spectrum Mama