Monday, April 14, 2014

CONFERENCE I: THREES

If you’ve been following this blog at ALL, you know that Z is a superhero-genius, with a conservatively-estimated IQ of 923. All parents are soooo objective, but most especially parents of children who were adopted, because that latter event basically frees us up to brag in an unfettered way by virtue of not sharing genetics. Naturally, Z being the next Curie/Vos Savant/Sandberg, I was expecting a pre-tty fabulous report card this spring.

Alas.

She received threes, meaning “Meets grade level expectations,” across the board. Several pages of threes. Out of  **50** possible grades, only three were not threes! She got a two, or “making progress toward meeting grade level expectations,” in the area of “demonstrates self control.” The ONLY fours she received were both on reading speed, during timed tests.

Z’s teacher is one of the best in the state, so I knew these grades were more related to Z than a failing on her teacher’s part. Still, I hoped her teacher could help with ideas about improving both her work and her grades.

During our parent-teacher conference, Z’s very kind, very experienced, very gifted teacher admitted she’s not at all sure how to get her to do better. She told me that Z finishes everything ahead of all the other students. Then, rather than polishing her work or doing a little extra, she socializes, which, depending on who is next to her, can often be a problem for that neighboring student. She has been offered the opportunity to work on an optional special project of her own, like other gifted students in her class – something for which her teacher gives up her own limited free time --  but has opted not to do so. Rather than focusing on learning, Z’s focus is often on “side conversations.” Because she is quick, she manages to “meet grade level expectations” – but only in a perfunctory fashion.

It’s the same thing with her homework. She has reading homework every day for twenty minutes? She reads for twenty minutes. She is asked to write a sentence using a vocabulary word? She writes the shortest sentence possible. Not working hard feels so alien to me, the quintessential OVER-tryer, despite having been schooled on this subject by many brilliant friends who were underachievers in school…Something about “If everything is easy for you, why ever make an effort”??

There is also the possibility that I am/we are putting too much pressure on her, that we are having overly high expectations. Perhaps she’s not quite as exceptionally smart as I have always thought. Her teacher and I were obviously on the same page in feeling that Z is not even close to living up to her academic potential, but maybe we were basing our assessment of Z’s potential academic intelligence on her apparently immense emotional intelligence. Or maybe her approach to schoolwork is a survival thing, sort of a “do what you need to do to get by” scenario? Nonetheless, it’s evident that Z needs to up her game a bit; and that we adults need to somehow inculcate an attitude of pleasurable effort to replace the getting-away-with-the-minimum stance she’s exhibited thus far.

The parent-teacher conference was a few weeks ago. The other day, Z and I had mama-daughter time while G was in drama club and as we walked I lectured her extensively (yes! I am fun!) on doing her best, taking initiative, etc. After talking at her for some time, I realized what I was doing and asked her why she is only doing the minimum. She finally confessed she “just want[s] to get it finished!” She is proud to finish before the others in her class, and simply not will to do more, unless it is clearly required.

I asked her if she thinks she’s as smart as other kids in her class, and she said “smarter.” I explained to her that the kids who are really smart are the ones who are learning as much as they possibly can, adding that you can be the smartest person on the planet but if you don’t work hard no one will ever know – and you’ll accomplish little.

I turned at this point to a beloved longtime educator friend, who also happens to be the Dad of many sons, to see if he had any suggestions. He offered the idea of giving Z extra projects. In his family, African history was the subject of choice. I decided to have Z study Chinese history. I had her get all her Chinese history and culture books together. I asked her to begin reading a chapter of the top book in the pile that afternoon. Afterwards, she would be expected to write a report.

I was doing the dishes -- with dinner on the stove – when, a few minutes later, she called out: “Hey, Mom…does this count as doing my reading homework?”

“Sure!” Scrub, scrub scrub...wait a minute! “…NO!!!! Come on, [Z], that’s my WHOLE POINT!”

I don’t have enough brain-space for this malarkey. Available doing-dishes brain-space is utilized pondering the truly important things, such as: do we actually have more nose hair as we get older? If so, is that why boogers seem to hang down in there more? And if both of these are true, is that FAIR? (My vote? No.)

But back to the matter at hand: after this interaction I logically must conclude that Z is a genius after all.

Next: CONFERENCE II: FOURS AND TWOS

Love,
Full Spectrum Mama

Wednesday, April 9, 2014

THE ADDRESSES

The Full Spectrum household is always on the lookout for experiences and resources that are neither inspiration porn nor negative Nellie-ism. We’ve recently had the pleasure of encountering two such items, and wanted to share them with readers:


  1. THE ADDRESS
It looks like this documentary is showing on most PBS stations on or around the 15th of April (I was able to attend the premier here in Vermont). Students, families and educators who experience learning differences such as dyslexia, dysgraphia, executive function challenges and/or ADHD/ADD will see themselves reflected in this documentary in a really beautiful way. So will everybody else! It's just a great piece about persistence and believing in others and ourselves and the amazing results of that magical combination of effort and faith.

The gaze of Burns’ film seems to rest on every individual with equal weight, conferring complete humanity and dignity on each in a way that nicely avoids inspirational clichés. Instead – and  rightly so! – his subject matter is people, learning, together.



  1. SECRETARY-GENERAL BAN KI-MOON’S WORLD AUTISM AWARENESS/ACCEPTANCE DAY MESSAGE AT THE UNITED NATIONS
Please take a gander. I’ve read and re-read this simple, magnificent message. The really wonderful thing about Secretary General Ban Ki-moon's approach is his clear recognition that ALL people have inherent value, as well as the capacity to dream and to realize those dreams. While we do need to meet people where they are, there is much to be said for not imposing a priori limits on what people may achieve for ANY reason.

People with disabilities are so often "tolerated," so often expected to have smaller dreams. The Secretary-General explicitly calls the United Nations (and the world in general) to task for just such attitudes and dares to demand more for people with autism (and, by implication, all people with differences from the "norm"). In his vision, “economic constraints” do not trump empowerment – and different abilities do not preclude fulfilling education and gainful employment. Comprehensive inclusion and acceptance are his mighty watchwords.


I see neurodiversity as one of the big civil rights issues of the new millennium. Ken Burns and the Greenwood School students and faculty, along with Ban Ki-moon, are influential and wise agents of progress in this arena.

Love,
Full Spectrum Mama


Wednesday, April 2, 2014

AQUARIUM: FISHY?



At G’s last IEP meeting, someone suggested he join a Social Skills/Pragmatic Language group that was starting nearby. If you are a parent of a child with differences (or a child with interests for that matter), you know how expensive activities (therapeutic and non-) can be. The fact that this group was FREE, because it was somehow part of a graduate program, caught my attention. I signed G up pronto. So far, we have been to three meetings and G has really enjoyed them. The boys (all boys…) play games and build things together and practice learning about each other and asking one another dialog-producing questions. Maybe the best part of all is the lack of eye-rolling: no one in this group has that developmentally-appropriate, neurotypical tendency to roll their eyes when someone acts “different.”






During the last meeting, the director of the program came into the waiting room and informed us that we were welcome to “watch the group” through a one way mirror. Apparently, this had been an ongoing activity for the graduate students and faculty involved, and was now an option for parents. I joined some students (and/or faculty) and other parents behind said mirror as they watched the meeting. It felt a little bit like looking into an aquarium. From time to time, people would comment, stuff like, “Oh, watch him, he’s really communicating,” or “Fascinating: watch how he…!” Several were taking notes.






I felt like the children were specimens in that aquarium. Without being ungrateful for the pleasure and – perhaps – learning that G was gaining from the group, as well as for its being free of charge, for the very reason that it was “educational” for graduate students, I nonetheless felt both creeped-out and horrified.






I didn’t want to undermine the class by making G feel funny about it, and I support the program if the participants find it beneficial. So I sent this email to the director of the program over a week ago:






Dear [program director],


I hope this finds you well.


I was a bit uncomfortable watching the kids in that context and wondering what you tell THEM about the window/mirror? If it's not too much trouble,


Sincerely,


[Full Spectrum Mama] ([G]'s mom)






I haven’t heard back.






I am all for scientific research, whether around health, genetics, disease, sleep, diet…autism…It can be informative, fascinating, and helpful for those who need or want help (this latter is a key distinction). As an academic, I can on some level understand and even accept that we need real live autistic people to learn about autism. Same for “autism awareness” (April is Autism Awareness Month), in that for people to accept autistic people as equal fellow human beings it’s perhaps best to get to know – in a non-awkward or –contrived or -condescending fashion – a real live autistic person or two. Shouldn’t be too hard what with the new statistics, right? …RIGHT?






Let’s also assume that everybody’s heart is in the right place in all of these endeavors from the Social Skills group to the folks who tout “Autism Awareness” to those who are skeptical thereof…






My not wanting G to be a “subject” of study could be NIMBYism, except – I like G just the way he is. In other words, I/we are not looking for scientific findings that will show us how to make G “right” or “better,” he's just practicing hanging out with some kids. His IEP team felt he needed help with social skills, this group came up, G liked it, end of story.






As a mother, and as a person on the spectrum myself, I can’t shake this de-humanizing aquarium image. And I can’t help but feel that if this kind of observation is "normal” there are some other groups I’d rather see put in an aquarium. Politicians, in general, come to mind. Abusers. Bullies. Mean people. What makes them tick and how can we cure them?






To be continued when I hear back from the program director…I hope.






Love,


Full Spectrum Mama



Friday, March 28, 2014

ON WRITING

In all of my classes, especially those on ethics, I teach students about the decision-making processes we must undergo as philosophical thinkers addressing issues and making choices. One of the key pieces of this process is a model I use as a sort of flow chart for figuring out what we know and do not know about a given situation. Presumably, these different pieces of information will combine to give us a more holistic approach to solving the wide range of conundra we broach in class and in our lives.


Some of the questions in the model include:
            What are the facts in this situation?

            What information is missing?

            A la Donald Rumsfeld, are there "unknown unknowns," i.e. things we don't know that we do not know? (Of course there are, sweetie!)
         
             Insofar as we can determine them, what are the assumptions and biases involved?
Are there unconscious assumptions and biases at play as well?

            Who holds the power? Who gets to make the decisions about, on the one hand,
possible courses of action,
             and, on the other,
which information is available/public/”true” vs. which information is privileged/private?    
        
             Who are the stakeholders? Who benefits? Who may not benefit – or be adversely affected?
        
             What is the heart component? How do the parties involved feel?



I try to use these questions when I write, much as I do in teaching.

As far as writing as a spectrum-y writer with my own particular quirks, strengths and weaknesses, I have to also ask myself where that might figure into the equation. For example, last week I attended an “Autism & Asperger’s Expo.” I ran into a colleague there and he looked puzzled to see me. I explained that I have a son who is on the spectrum and who was attending a Pragmatic Language/Social Skills Group located in the same building. At this news, he looked, so far as I could tell, shocked and dismayed. But, as I had barely recognized him in the first place (see: prosopagnosia), I certainly cannot trust my assessment of his expression. I do know for a fact that he said, quite appropriately, “I didn’t know that” – and that’s all I can reliably report.

In another instance, I had incomplete information and told a story that was based on the information I had that in the end was not true to what had actually happened due to missing infomation. This post, about a family who seemed to have been inadvertently “outed” as having an autistic member, really resonated with  people and parents with a variety of personal and family differences as a common aspect of our lived experience. What had actually happened emerged as slightly but significantly different from what I had reported. The server in question, who happens to read this here blog (? I feel honored!), had mentioned to Pardner that – actually! –
1.                          the Dad of the family had been distant, detached and fidgeting with his iPhone most of dinner (therefore he was not suddenly alienated in some way by feeling labeled), and
2.                          the family had itself volunteered the name of the school the son was visiting (and therefore the server had not presumed).

I was chagrined. I spoke about it with a few people, all of whom said stuff like, “Oh, the story’s so true that the facts are almost irrelevant,” or “It’s all relative, anyway.” I (lovingly) disagreed. While it is true that families and individuals with differences can potentially have relatively more challenging interactions than “normal” people, and that this may well have been a painful experience for said family for whatever reason, what really happened really does matter. I take it as my responsibility to make that very clear, in this scenario and beyond.

Information is always partial. As writers, we know this fact full well. Some non-fiction writers even embrace it in pursuit of polemical points. This partiality of knowledge holds for all writing, including that which is considered “objective.” At the same time, I do believe in Truth. There can be unknown or temporarily-disputed facts, and different perspectives on the same truth, but I am not, never have been, never will be a relativist. I am always happy to clarify, or to add other perspectives, whether or not they are in tune with my own, so long as they add to the truth and honesty of a piece. In short, I, along with most writers I respect, aim our endeavors toward truth, at some times getting closer than others…

In this case, the parties concerned were totally bighearted about my getting it not-quite-right: I believe the server’s actual words were, “Oh, I get it! I just don’t want you and [Full Spectrum Mama] to think I am an insensitive bimbo.” Heck to the no.

So, because I know it’s just what everybody was waiting for, I have developed a model for writing creative non-fiction that suits my goals for integrity and transparency:



                              Figure I – Venn Diagram of Ideal Non-Fiction Writing Composition


Full Spectrum Mama is an Anonymous blog, with the vast majority of readers reading from afar. Yet I believe there is a sort of trust inherent in the blogger-reader relationship that I would never intentionally violate by deliberating lying or writing with bad intentions. So I have also crafted this handy diagram of unsavory elements that are never welcome in this blog:



 Figure II – Relativism and Known/Intentional/Conscious Bias en route to Finding Another Blog to Colonize


Love,
Full Spectrum Mama


Wednesday, March 19, 2014

PAIN – SQUARED

Parents who have children who were adopted from orphanages often have to ‘teach’ their children to acknowledge pain to themselves and to express pain to others. Although Z came into our family at only nine months of age, she had already learned not to react to her body being hurt, or to express hunger or thirst through a baby’s only language (tears).

Instead, she expressed herself primarily through screaming if being put down at any time. Once she found someone to hold her at length, a single person devoted only to her and her brother (to whom she was immediately attached as well), she was not about to be abandoned. This was particularly acute during her first weeks with her family, during which not only did she demand to be held at all times but also to be walked around while being held, resulting in SEVERE sleep deprivation for all concerned.

Arriving home, we embarked upon a plan. I had heard that children whose most basic needs for comfort have not been met may present a range of developmental and emotional challenges and I had bright ideas to “fix” some of these potential issues. Reacting to pain came first: a strategy of exaggerated response to any possible injury quickly taught Z that if something happened to her that potentially did not feel good, and there was someone nearby to help, she could get a response to her feelings and be the beneficiary of comfort measures, such as an ice pack or the proverbial band-aid.

To this day, though, Z doesn’t even blink an eye at pain when she thinks no one is looking! I have watched from the kitchen window as she has fallen – hard, or been accidently but vigorously wacked with something from afar by her clueless brother. She never makes a sound…or even a face. I wonder: did she somehow never develop some important aspect of the neurology to feel pain because of those early months of neglect? Is she just brave as heck? Does she feel the pain, but less?

G and I, being highly sensitive personages, have to work really hard not to scream when we, like, step on a stray drop of water (no - really), so this is definitely a germane question in the Full Spectrum family.

Whereas a casual hidden observer could probably catch G or I writhing privately in agony several times a day, I’d wager that observer would never see the same in Z. Z has learned that public expression of discomfort leads to results, but when there is nothing to “gain” by reacting, she seems to have decided not to waste her energy.

Similarly, she doesn’t seem to notice hunger or thirst unless in the environs of potential indulgers, in which case she will avail herself of various and sundry treats. G and I, within an hour or two of not eating, invariably find ourselves starving, even trembling, with hunger. Much longer and we become vague, lightheaded, nauseous. I happen to be hypoglycemic, and G may be too; perhaps equally significant is the fact that we both had our needs met as infants. Our physiology (sensitive) and our early environments (sensitive to our needs) matched. 

Z, in contrast, seems to be able to function indefinitely without eating, unless food is offered to her. That is, her energy stays high, her focus sharp, her spirits strong -- whether she eats regularly or not…[Obviously, I haven’t performed experiments on her, I am going on seven+ years of observation.] It’s hard to imagine she could be experiencing hunger in the profound and extreme way that G and I do and still function so well, but, as must be asked vis-à-vis her pain, doesn’t she feel some hunger? She knows her situation now is one in which her needs can be met, and yet she still self-limits on those needs…unless – and this is a real possibility -- her physiology just really is that different.

That her response varies so widely according to context potentially indicates a reduced sensitivity to her own body’s cues and/or a self-imposed (conscious or un-) denial of self-nurturing and/or a really advanced mastery of social capital. Would Z be more sensitive overall, and therefore more vulnerable, had she been nurtured differently in her first months?

People sometimes ask me to blurb their books or products or blogs on this blog and I recently agreed to read a novel about reactive attachment disorder (RAD) by a reader named Michelle Weidenbenner. Her book is called Scattered Links (http://www.amazon.com/Scattered-Links-Michelle-Weidenbenner-ebook/dp/B00HP3X6R4) and it is about a Russian orphan’s journey. I haven’t finished it (and it seems to have some Christian undertones, which may be a plus or a minus or neutral for different readers), so I haven’t yet got a blurb. I was struck powerfully, though, by this sentence from the preface, which is written in the orphan’s voice:

“We never learn how to ask for what we need because when we do, no one listens.”

I’d never connected Z’s inability to acknowledge pain or hunger with her inability to ask for what she needs or wants. Z’s refusal to ask for things comes across as regal, but it’s at base a survival strategy, a sad concession to a disappointing start.


The other day we saw a “Wild Women Don’t Get the Blues” bumper sticker and Z asked what it meant. I explained that women have often been taught to do as they are told and that doing so, just for the sake of obedience, makes women unhappy. Women should follow their own dreams and beliefs, I told her, and then they won’t get “the blues.” But sometimes the other people who make the rules -- and the other people who follow the rules -- don’t like when you make your own rules, and they might call you “wild” or “different” or “crazy,” even. And that’s okay, because you will be happier -- and stronger -- for following your own heart.

Of course, she’s still too young to make up her own rules. And I assured her I still get to boss her around for a Long Time. But I want her to know, and I will continue to say to her:  if something (or someone!) hurts you, or if you are hungry for something, speak up, my daughter!!!! How we feel – in our hearts, our bellies, our bodies, our beliefs – matters. YOU MATTER.

Now, let’s eat!

Love,
Full Spectrum Mama


Tuesday, March 11, 2014

BEING 12


 I was talking with a very close friend about a crisis* G had in school last week and, after I’d been blabbing for some time, she said, “Well, you’re so focused on his autism what with the blog and everything, and, you know, all kids have struggles…”

Oh dear…Is that what people think, that for us it’s all blog and/or autism? To clarify, I have three jobs now. So it’s a privilege to think about this darling blog for even a fraction of a moment. Second, this conversation had nothing to do with the blog [until now, anyway] or G’s having asperger’s. Did I mention autism during my diarrhea of the mouth**? No. This – all this I had been sharing with her about what happened at school, which incident was very painful -- was
about
being
12.

This was, maybe, partly, also, being a child of a tough divorce. But autism? Not so much. The main crisis-inducer here was, again: being 12.  Luckily, we are good enough friends that we were able to clarify our respective perspectives well and move on, but it sure got me thinking…

Is 12 the hardest age? My vote is yes.  You are still so young, but bravely trying to be “grown-up.” You are sullen, self-loathing, monosyllabic; while also still wanting and needing to be taken care of and adored. You are still extremely cute and squeezable, yet you are, at times, a jerk. Other times, you are sweet as sunshine. Then: jerk! Sunshine. Sunshine. Jerk.

It’s SO moody at 12.

Your peers are starting to have serious interest in whoever they might be interested in romantically; and, although you might not be quite there yet, you feel it stirring. And it’s confusing.  Watching G sometimes, one can almost see the new feelings and hormones moving inside him, moving him, like the sap running in trees this time of year.

At 12, most kids won’t admit to still liking to play…and yet they do still like to play, in private or at home with younger siblings.

Sure, maybe for G, he’s a bit developmentally behind his peers, but being 12 is something that happens to most people at some point, whether they are 11 or 13 or…


Being 12 is, for G, about knowing soon you will have to put away your stuffies.



Figure I – G has a LOT of stuffies. His treasured seals [one is a manatee, oops!] are in front.***

Being 12, for G, also means still being enough of a little one to offer your best stuffies to your mom when she is sick.



      Figure II – Healing Stuffies, Blanco and Blancli, on Mama’s Pillow****

Being both of these is tender, and raw, and HUGE.

Sometimes things in the Full Spectrum household are pretty near idyllic, and sometimes they are decidedly not. Sometimes that non-idyllic situation has to do with autism or an attachment disorder or something else entirely…Sometimes, for pure awfulness as well as the occasional marvel, being 12 is enough.

Love,
Full Spectrum Mama


* Yes, I do use this word advisedly.

** I know I promised less diarrhea-focused writing; this is diarrhea of the mouth.

*** Please, those of you for whom this blog is not anonymous, DO NOT SHOW THESE PHOTOS TO YOUR 12 YEAR OLDS!

**** None of these stuffies will be gotten rid of. It’s possible they will “belong” to G’s younger sister in future, or move to FSM’s bed (shh, pardner doesn’t know about this), or be given to deserving, saintly little ones in great need.


Wednesday, February 26, 2014

OH! THE ____ SCHOOL?


Pardner is a chef and recently texted me during dinner service about a nice family that was at the restaurant. He said he’d been observing them, from his open kitchen, and he thought the teenage son was “very lovable” and “probably had asperger’s.” He mentioned that the kid had told the server that he wanted to come back and visit the chef after dinner, and was hoping that was okay with Chef. Pardner being a cheery and accommodating fellow, it certainly was.

An hour or so later, Pardner texted me again. This time he told me that the father of the teenager had turned out to be “a jerk.” When he came home (late – argh), he told me more about what had happened. Apparently, this Dad hadn’t let his son visit with Chef, and had been short with the server. Somehow over the course of the meal, his personality had changed.

I was really surprised, but I was also sleepy.

In the morning, I asked for more detail. It turns out that the server, a well-meaning and sweet person who has some experience with children, had engaged this family in friendly conversation. When she found out they were not local, she’d asked why they were in the area and they’d said they were looking at schools.

“Oh!” she said. “The ____ School?”

The ___ School is a school for children with special needs.

“Well, there you go,” I said, feeling a little sick to my stomach for that family.

“What?” retorted Pardner, completely dumbfounded and baffled.

“You don’t even get it, do you?” I replied, nicely.

Shut the Front Door.

Imagine you are a family. Maybe you have a child who is “different”…but you want that child to have every opportunity. So you take them out to a fancy restaurant. Part of you, hypothetically, is praying that your child is not disruptive in any way. Another part of you feels that your child has as much right to be in a restaurant as anyone else. Part of you, again, hypothetically speaking, celebrates your child EXACTLY AS HE OR SHE IS; another part (probably much smaller but still there, okay?) desperately wants your child to fit in, to be accepted, to be able to “pass.”

So you are eating your dinner. Maybe it’s been an intense day with interviews, maybe with wondering if your child is “too different” or “less different” than other kids at the potential school. Maybe you just want to eat some ding dang dinner in peace. And your chipper, cute, 20-something server just – out of the blue, basically; trying to be “compassionate,” or “knowledgeable,” or whatever  - busts out with her “understanding” information.

Because, obviously, your child needs to go to the “Special” school, right????


“Really?” Pardner asked, after I explained this to him through my tears. I felt so bad for that poor father, and the kid, who’d been pigeonholed, albeit by someone with nothing but good intentions. “Hmm. He didn’t leave a very good tip.”

“See?” That was the final proof for me. Even though that server had done her best vis-à-vis her actual job, and probably deserved the great tip she usually would’ve gotten, her presumption had not served anybody well.

Love,
Full Spectrum Mama



P.S. The ____ School is a fantabulous school. That's not the point.

P.P.S. Please also see "ON WRITING" for an update on this post!