Tuesday, May 14, 2013

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.

Tuesday, May 7, 2013

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



Friday, April 26, 2013

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

Wednesday, April 10, 2013

“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


Monday, April 1, 2013

Springtime at the Orphanage


Tra la la…”Sweet lovers love the spring…”*

Tra la…

Let’s see…

This time last year, we were in discussions about a possible 504 Plan** for Z. The year before that, we sought attachment-disorder-specific therapy for a situation that was spiraling out of control – and out of the range of bearable.

This spring we are facing a renewed cycle of tantrums and other behaviors, many of which have lain dormant since as long ago as, well, last spring. I’ve had to write Z’s teacher several times explaining that she had not had breakfast due to a meltdown; now I know to pack extra snacks – stuff like that.

While Z sometimes says things she intends to be very hurtful (a wee bit embarrassingly for all, these things often seem funny to adults in the vicinity: “You stupid poopoo mother I will hate you forever and kill you With! This! Doll! And then I will never! Ever! Eat the BAD, DUMB dinner you cook again!”), she more often proceeds directly to the pre-verbal, with growls, shouts, kicks and screams prevailing.  We’ve come to understand that this regressive behavior demonstrates Z’s ongoing need to be nurtured as (if she were still) a baby.

The cycle of the seasons clearly has deep meaning for Z.  The merry infant who smiled back at us from her taken-in-February referral photo had, by the time we arrived in China in July (this was as fast as the process allowed) to bring her home, seen and felt things no child should endure. I cannot say whether Z endured any definite abuse. We were not allowed to enter the orphanage in Fuzhou (Jiangxi province). Certainly there was a significant level of neglect, and, judging by how skinny Z was -- and how voracious – a bona fide shortage of food.

Z’s orphanage experiences are still reverberating in her body and mind in ways unfathomable to those of us who at the very least had adequate food and some constant presence in our infancies.

Sure, we’d all like to have been loved unconditionally and to have known we came first to our parents and maybe some of us didn’t get that and yeah, that sucks. No, it really does. And we - some of us - do have cavernous, terrible, enduring holes inside where that love should have gone. But anyone privileged enough to be reading (or writing) this blog probably had their most basic needs met. Z didn’t. She’s traumatized. It comes out in the spring.

As the years have gone by and we have been able, with the help of our therapist, to identify this pattern, it has helped all of us feel less hopeless. It’s given us some context, rather than leaving us flailing in the dark as our family degenerates, seemingly out of the blue. I can say to Z, “Springtime is sometimes hard for you,” and that might let her know both that she is accepted and that this, too, shall pass.

We are not alone in having a child who hits a rough patch in the spring (or in some other cyclical context). Whether through embodied trauma, allergies, transitions…certain times of the year can trigger strong, often unhealthy behaviors and feelings.


This spring, partially to address these issues and partly because we’ve put our house on the market, we embarked on The Deep Cleaning of the Bedrooms. While each child cleans his or her room weekly, with some help from Mama, this was a whole different endeavor. I swear, between recycling and straight up trash I hauled several hefty bags out of each child’s room.

G’s room was a giant mess, but Z’s room was a project. A certain kind of masterpiece, actually. Millions of tiny twists of paper had been squirreled away in every possible crevice. There were a lot of unfamiliar (to me, anyway) toys, and pieces of candy and candy wrappers and Oreos (Oreos??!) in hidey-holes and in bags within bags (whenever I come across a snazzy second hand purse or am given one, it goes straight to Z). 

Progressing from irritation to wonder, and back and forth again, I stood in awe at the complexity and skill of Z’s hoarding.

When we were done (after many, many sensory breaks for all) and we’d dealt with the garbage and recycled the recycling, Z was as happy as I’ve ever seen her. You could actually see how light she felt, how purged. Without prompting, she expressed her desire to “be really peaceful all the time now!” and to “draw instead of ripping and hiding things!”

Nice ideas. Let’s hope they work, at least a little. Spring cleaning is traditional in many cultures and maybe there is a deeper source to this impulse than just the practical, cleaning-cleaning part.

In any case, I do believe we will aim for a Deep cleaning every Spring from here on in.


I’ve always suspected that when parents try to correct for the wrongs done them by their parents they probably will be causing equal yet opposite forms of wrongs to their own children. Butanyway, I try to work on the heart level too, because my generation is big on endowing our children with unconditional love.

Sometimes we have this exchange, which both children find quite boring:

FSM: “Do you know what is the most important thing on earth to me?”
Children: “We are.” (Ho Hum.)
FSM: “Do I love you completely in every way no matter how you act?”
Children: “Yeeees.” (With ennui.)
FSM: “What do I think you are?”
Children: “Marvels.”

Marvels! The great cellist Pablo Casals said this about children:

Each second we live is a new and unique moment of the universe, a moment that will never be again. And what do we teach our children? We teach them that two and two make four, and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work, we must all work, to make the world worthy of its children.

Pablo Casals (1876 - 1973)***

Springtime at the Orphanage might’ve been terrible, but, here, it’s got marvels too.

Love,
Full Spectrum Mama



* "It Was a Lover and His Lass"
BY WILLIAM SHAKESPEARE

It was a lover and his lass,
   With a hey, and a ho, and a hey nonino,
That o’er the green cornfield did pass,
   In springtime, the only pretty ring time,
When birds do sing, hey ding a ding, ding;
Sweet lovers love the spring.

Between the acres of the rye,
   With a hey, and a ho, and a hey nonino,
Those pretty country folks would lie,
   In springtime, the only pretty ring time,
When birds do sing, hey ding a ding, ding;
Sweet lovers love the spring.

This carol they began that hour,
   With a hey, and a ho, and a hey nonino,
How that a life was but a flower
   In springtime, the only pretty ring time,
When birds do sing, hey ding a ding, ding;
Sweet lovers love the spring.

And therefore take the present time,
   With a hey, and a ho, and a hey nonino,
For love is crownèd with the prime
   In springtime, the only pretty ring time,
When birds do sing, hey ding a ding, ding;
Sweet lovers love the spring.


** 504 Plans relate to a wide range of “impairments” to learning, the variety of which may or may not fall under “Special Education” criteria. Z’s disruptive classroom behavior -- which stemmed from her attachment disorder -- was impairing her ability to learn as well as disturbing her teacher and fellow students.

Here is a good definition of a 504 Plan from http://specialchildren.about.com/od/504s/f/504faq1.htm :

Question: What Is a 504 Plan?
Answer: The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.




Tuesday, March 26, 2013

May I just say…


…that I am NOT looking to “cure” my son’s autism?

If everybody in the world were more like him, the world would be a much better place.*
That is all.



* Albeit messier.


Wednesday, March 20, 2013

The Least Popular Kid in the Class – Part Two


At the time of the Least Popular Kid in Class Incident (http://fullspectrummama.blogspot.com/2013/02/the-least-popular-kid-in-class-part-one.html), I tried to get the scuttlebutt on what – besides crying -  happened after G answered the day’s question, but continued to get “stuff” in response.

Chances are, he was genuinely unable to put his feelings into words.  We are neurologically quite similar, and it took me until, oh, last year to realize that where I stand on the spectrum, I tend to get upset before I understand exactly why I am upset (never mind putting those feelings into words!). The overwhelming quality of intense feelings precludes clarity around those feelings until the strong feelings subside. This can be true of overpowering sensory feelings (such as those experienced by sensorially-sensitive people in the average classroom), as well as emotional ones.

Still, knowing that he needed time to process was not going to directly aid G with his lack of popularity, or make him feel better about crying in front of his classmates.

Outside of suspecting it would not be really, really helpful to tell G, “But you’re my very best friend, buddy!” I was at a loss of how to help my child.

So I wrote G’s teacher along these lines:

Dear [teacher],

I love that you start morning meeting with a question. I do the same in all my philosophy classes [read: I am not about to bust your chops for asking big questions]. And I think yesterday's question was a great one. I’m just unclear on exactly what happened after [G] answered the question and then, “for some reason” (according to him), began crying.

When you get a chance could you let me know a bit about what happened yesterday so that I can best support [G] at this time? Or if you have any suggestions...

I know you have your hands full, so at your convenience.

Thanks so much,
[Full Spectrum Mama]

Responding via email, G’s teacher explained that a number of students had been being inattentive or having side conversations while G spoke. Other students had interrupted him, saying that he was wrong about being unpopular. These latter, while acting with good motives, “were not speaking in turn or being respectful to the process.” These factors contributed to G’s frustration.

He assured me that he had never seen anyone be intentionally or directly unkind to G, but admitted that G is often left out or “not paid attention to”…

He concluded with some positive thoughts: “As stressful and unpleasant as it was, I believe that the log jam's been broken and we are going in a positive direction with this very social class.  While I apologized to [G] for him having to go through this situation I also thanked him for giving us all the opportunity to examine our careless and thoughtless behavior and make positive changes.”

Whew!

It was a great gift to have a broader picture of events, and to be able to engage G in a slightly more nuanced processing of what had happened. Not that any of this is going to turn G into someone who doesn’t sometimes get flappy, or extra-loud, or reveal new heights of dorkitude. It might help him accept himself, though, and that’s more than good enough for those of us who love him.

“Free to be You and Me,” with its messages of inclusion, celebrations of difference and our family favorite song “It’s alright to cry,” has been on pretty heavy rotation in G’s room the last month or so. He seems to be feeling less lonely at school, but he’s still asking to spend recess reading in the library because, for him, navigating the playground scene is tremendously daunting.

Now, over a month out, I think everybody was right: lots of kids grew and stretched to be more inclusive and thoughtful following this incident – but G may still have good reasons to cry in school.

Sometimes, too, he may not even know why he is crying.

What he will know is that crying is healthy and totally, utterly, absolutely super alright: http://www.youtube.com/watch?v=Y52bs0aX6v8 *

Love,
Full Spectrum Mama


* Best. Video. Ever.