Friday, October 26, 2012
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...
Monday, October 22, 2012
Poorly Behaved: A Context Spectrum
“Z, please come downstairs,” I called from the kitchen.
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 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.”
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.
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.)
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:
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 96th 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.
Labels:
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Wednesday, October 3, 2012
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.
Thursday, September 27, 2012
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.
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?
?
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!
“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?
?
Monday, September 10, 2012
"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.
Labels:
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ethical rules,
Executive Function,
knights,
Labeling,
neurotypical,
ocean,
peace,
RAD,
reactive attachment disorder,
routines,
social rules,
songs
Tuesday, August 28, 2012
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
http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=1&src=me&ref=general
Love,
Full Spectrum Mama
Friday, August 17, 2012
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:
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