Wednesday, September 17, 2014

OUR FIRST ARGHER AND ACTIVIST AWARD

I know an Argher and an Activist when I see one, and, once in awhile, I am going to need to give a shout out to someone who really Arghed and Activised the heck out of something.

The first Full Spectrum Argher and Activist Award goes to a 14-year-old kid who happens to be on the spectrum and happens also to be a badass knight in not-gonna-take-it-anymore armor in Bay Village, Ohio who bravely came forward and called out the people who played a (warning: graphic and disturbing) TERRIBLE ALS Bucket Challenge prank on him.

Some people just can't get right....but some CAN! Bravo,  courageous one.

Please show your support at this Give Forward site.

Love,
Full Spectrum Mama




Tuesday, September 9, 2014

PARTY BOOKS

I.

We are at a party. I am having a good time because I am emotionally prepared, have had my one allotted beer, and know lots of people. Z is fine, as always. G is careening around, reminding me of Brownian Motion, not connecting.

He’s basically gorging on sweets and walking in circles around the perimeter of the party.

I know he feels overwhelmed, maybe lonely too.




                                                  Figure I – What a Party Can Feel Like with SPD



II.

G is swinging on a vine outside the party.

“That kid is weird,” says a young white girl, maybe 7 or 8 years old. Her two companions, same general description, nod their heads.

Why? WHY IS MY KID WEIRD? What did he do? Seems to me this vine-swinging is the most “normal” thing he’s done all night.



III.

G wants to leave, as he has from our moment of arrival. I try to buy some time outside. A family - mother, father and child - are standing nearby. The father takes the child, gets in the car and leaves. From the child’s posture, I sense exhaustion.  

“Too much?” I ask the mother.

“Yes,” she says.

“Sensory processing differences?” I wonder aloud, not entirely sure why…just a gut feeling…

”Oh yeah - ___ [her child] is definitely spectrumy.”

(Note: While not everyone with Sensory Processing Disorder {SPD -- which I prefer to call “Sensory Processing Differences,” by the way} is on the autism spectrum, most people on the spectrum do have Sensory Processing Differences. Both ASDs {autism spectrum disorders – though I do take issue with “disorders” in this label as well [another post!]} and SPDs share the aspect of being neurological – vs emotional or psychological – differences.)

But back to “spectrumy:” Yay.

Now we can talk. And we do. Our kids were in different grades at the same school, which is why we looked familiar to one another. At this party, while my G was blundering awkwardly around, her child was getting and expressing an overwhelmed feeling in other ways.

So we have this great bonding conversation about the kids’ social lives and our home lives and all...

…And then she says, “I wish I’d’ve just let ____ bring a book. Then this all would have been totally fine.”

“Whoah,” I shake my head. “G wanted to bring his book too, and I just wanted him to try this and be here, try to connect and talk to people and practice social skills…you know? And it’s been pretty rough…WHY DIDN”T WE JUST LET THEM BRING THEIR BOOKS?”

We sad-smile at each other.

They could have sat together, reading. I bet they would’ve been totally happy, not careening or leaving. I bet they would’ve had the best time.

Next time.




                                      Figure II – What having a Book at a Party Can Feel Like with SPD

Love,
Full Spectrum Mama







Wednesday, September 3, 2014

ARGHERS AND ACTIVISTS

Hello, my name is Full Spectrum Mama and I’m an Argher and an Activist.

I’ve been politicized by having “different” children, but I suppose I was pre-politicized by being “different” myself. In the family I grew up in…well, let’s not get into that. Let’s just say it took me a long time to realize that speaking up when something is wrong is not “having a victim mentality!” It’s about seeking justice. Speaking up does not make you the bad guy. It makes you an Argher and an Activist.

The “Argher” label arose when my Meeting Friend and I were commiserating over an injustice and I thanked her for the pleasure of feeling like we always understand each other and she replied, “I can argh with the best of them.”

Well, I appreciate that a great deal!

People with obvious differences from the “norm” and/or the majority  – those with visible physical differences, differences of demeanor, skin color differences, some trans people… – don’t have a choice about being noticed. Sometimes that “noticing” takes the form of bias, discrimination, bullying…

People who are activists for animal rights or political justice or against other injustices may be activists for causes that are urgent, but they have a choice.

In any case, there IS injustice in the world.

Sometimes what we need when life deals injustice is someone to say “Argh!” with us. And that can be enough. Actually, we almost always need a fellow Argher -- at the very least to understand and empathize.

There are several sorts of Arghers:
            The CO-Argher, who shares your situation;
            The WITH-Argher, who just completely Gets your situation;
            The GENERAL-Argher, who is compassionate in every way…
…We will not deign to discuss the ANTI-Arghing-Argher, who wants the other Arghers to can it, pronto.

Our fellow Arghers make life bearable when something feels very wrong. But, often, we need more. The “Activist” label arose for me when stupid stuff happened & I chose to call people & institutions out on their discriminatory behavior. Activists seek to be catalysts for change, because the status quo is often unacceptable.

Arghing is private, but Activism is public and often elicits resentment. People generally want Activists to keep quiet and go away so that they don’t have to be inconvenienced by accommodating the equality of ALL.

So—rry.

Activists may be sorted into similar categories:
The CO-Activist, who shares your cause (just about everyone I know who has a “different” child has been shunted into Arghing and/or Activism. As a parent, one basically has no choice);
            The WITH-Activist, who just completely Gets your cause and supports it;
            The GENERAL-Activist, who is justice-oriented in every way;
The ANTI-Activist, who finds Activists burdensome and pesky.

Liminal people – minorities, people with differences, etc. – often have way more encounters with neurotypical, gender, economic, racial, normative or other privilege. If a given liminal individual (or their parent or partner or other loved one) is strong/brave/privileged/foolhardy enough, he or she may choose to speak up about injustice.

For many reasons, however, we don’t always say something, whether through public Activism or private Arghing. Some of us are non-verbal, some of us are shy, some of us are scared, some of us are tired, some of us are cynical, some are resigned…

We DO always feel it, though; of that you may be sure.

What happens, then, is that those of us who by virtue of our own and/or our children’s and/or our loved one’s differences see more injustice and choose to address it sometimes find ourselves in these positions:
“rebellious” people of color,
“uppity” women,
“whiney” people in poverty,
“annoying” disabled people,
“shrill” queers…
A.k.a., Arghers and, perhaps, Activists!

The funny thing, vis-à-vis the people who resent Activism, is that the kinds of Arghing and Activising that I am talking about are long-term beneficial to ALL. Sure, it might take some stretching on the parts of certain individuals and institutions. The “privileges” of inequality from which some benefit (and others suffer) may be hard to relinquish, but I cannot hope but believe the rewards would be more than commensurate. Truly, what do we ultimately have to lose by being more inclusive as individuals and communities??

Ideally, as painful as they are, these experiences of talking about and struggling with and negotiating over and even experiencing injustice make us more fully human, more empathetic to others.  Once we have experienced injustice, we don’t want ANYONE to suffer.

Take, for example, Hedy Epstein, the 90-year-oldholocaust survivor arrested for protesting against institutionalized racism and violence in Ferguson, Missouri last month. My instant take on hearing about her was: OF COURSE: She has experienced and recognizes injustice…She cannot stay silent, having once escaped being permanently silenced.

She, too, is an Argher and an Activist.

We can be proud to share her proclivities!

Love,
Full Spectrum Mama, A. & A.

Wednesday, August 20, 2014

MIDDLE SCHOOL* PRAYERS**

(SUBSTITUTION POLICY:

Please feel free to change the terms of any of these prayers** if they feel useful to you! For example: *“Middle School,” might become ANY school or institution or event or transition; **“prayers” might become wishes or hopes or a more formal type of prayer…

This post comes out of our Middle School Special Education Transition Orientation meeting, in which most of the parents were crying – and shared many of these concerns; it also comes out of my own fears about this transition; and from a few things G – who’s playing it mellow on this one -- has said. But I think the generalities and specifics may apply in a lot of situations.

I open with “Dear Universe” because it seems most inclusive and I love how the literal translation -- “one song” – includes and unifies this big ol’ glorious mess of a world. Please substitute God (however you mean this word, or whatever word your faith uses), or any other concept here, including “Dear me, may I do my best to ensure that…”)


Dear Universe,

May our children have a gentle transition to Middle School. Specifically,


1.      May they not succumb to the horrors of Homework –

a.       In the DOING of the Homework, may they not find it such that it is “the last straw” in a day in which there have already been enough struggles to succeed, often in areas of extraordinary challenges,  whether social, academic, emotional, neurological, physical...

May they have time, still, to be kids. May they have time to play with their families, rather than always trying to “catch up” on all these many levels – and rather than their families having to spend most of their time together waging mighty battles in the effort to compel our children to complete said Homework.

May you uplift the brave Mama of the Middle School Special Education Transition Orientation meeting who saw fit to refuse to force her child to do Homework because she chose, instead, to let her child have fun following her child’s very, very hard work during the school day.

b.      And, Dear Universe, even more specifically, in the matter of the KEEPING TRACK OF the Homework, may we all gain skill and patience in this area, for  it is immeasurably harder to get kids who are already at their limit to bring home extensive and organized information about assignments.

While we may take advantage of online and phone resources at the Middle School, may that extra step send neither we nor our children “over the edge.”


2.      May our children be undaunted and unbowed by the rigors and pitfalls of Physical Education --
.
a.       May their PARTICIPATION be unmarred by being always last chosen and barely tolerated…May all games be inclusive – and may the choosing of the teams, if teams there be, occur by fair and just and random means.

May the words of the outgoing principal at the Middle School Special Education Transition Orientation meeting, “We think it’s important for all students to fully experience this social, competitive aspect of middle school,” have been misspoken, for, when they were spoken, you, O Universe, could hear the air go out of the room. You could hear, surely, the thoughts of the people of the Middle School Special Education Transition Orientation meeting and they were: Compete? Really? Some of our kids can’t catch balls. That does not make them “less than,” but listen lady, for most of us P.E. is not gonna be a strong suit for our kids…

b.      May the new ritual of CHANGING for P.E. be less agonizing and costly than we expect. Please watch over our children as they attempt to tie their shoes, maintain a modicum of executive function, not lose EVERYTHING, put on and take off the right clothes at the right time and in the right order, not stare inappropriately, and so forth.

And, lo, though they may not succeed in these efforts, may they nonetheless not get teased in the locker room for these or any of many other possible reasons…:

1.      In the matter of our kids’ UNDERWEAR, may you ensure that nothing too awkward or inappropriate happens during the aforementioned change? Please? One parent asks, as she did of me yesterday, may we ensure that my child does not have little kid underwear on? Also, may the underwear be pulled neither way too high nor way too low? May G, for example, not wear his underwear backwards and in a total wedgie as he is generally wont to do?  

We are not asking for a trade, Dear Universe, but we do agree to do everything in our power to make sure these risks are minimized, such as the pre-departure underwear check; it’s just that the locker room itself is out of our hands.


3.      Bullying. Universe, You know this is a HUGE one for those of us with differences and/or with children with differences!

a.       May our children not BE BULLIED.
Yes, Dear Universe, we know that Middle School is the world epicenter of bullying, and we know that kids who are different get bullied MORE …yet we dare to dream that our prayers that our children not be bullied might be answered, whether by a zero-tolerance school environment, social skills classes, that one cool kid is who so cool he or she doesn’t need to shun someone who’s “weird,” some combination of these, etc.

MAY NO CHILDREN - ANYWHERE - BE VICTIMS OF VIOLENCE FOR ANY REASON, O Universe. And may this particular prayer be as unnecessary as it should be, rather than as ridiculous and unrealistic as it actually is. 

b.      May our children not be misperceived as BULLYING -- or pushed into BULLYING by peer pressure or anxiety, or by being BULLIED:
There is then the type of scenario where our kids act in ways that appear to be bullying when in fact they are just clueless…and sometimes, like my G, really large and intimidating despite being a gentle and loving lambikin.

And there’s the scenario where someone who is already struggling is forced over their sensorial or social tolerance limit to a point where they lash out in what feels like self-defense.

The overall high levels of social awkwardness and hierarchical jostling that accompany this transition make these kinds of mixups more likely and we pray, Dear Universe, that our children be kept safe from these dreadful possibilities.


4.      May the issue of varying levels of Maturity – Or lack thereof -- …combined with hormones…oh dear.

May we somehow help our children navigate this particular minefield with aplomb.

Or at least a minimum of outright disastrophes.

G and his peers on the autism spectrum may by definition have developmental delays and those, combined with certain physical developments, make for a complicated mix.  Other non-spectrum-y kids in Special Education may have similar issues, including challenges around judgment and impulse control.

Heading into a context where almost everybody is a seething mass of hormonal, social and mental changes will be…interesting at best.

Dear Universe, you’ll recall when I was a VERY young 12. Curious about sex, hormonal, but very, very innocent. G is similar, but, if it’s possible, even more oblivious. What G lacks in commonsensicals, he certainly makes up for in heart-of-gold, but I am not convinced this combo will serve him well for the next year or two.

Therefore, in your infinite wisdom and harmony may you at least try to help him and the rest of our children entering Middle School to not embarrass themselves unduly.

Please watch over our children and prevent them from seeming to be stalkers. 

We beg - beg! - that you not let them be taken advantage of. 

Also, please see that the age of their bodies and the age of their minds and emotions correspond at least slightly, both within their own beings and amongst their friends.

And may they find friends, O Universe. Even just one friend. One who doesn’t care if they still like playing, for instance, pokemon.


5.      May our children operate their Lockers –

Dear Universe, can you see our kids being really great with the whole locker thing? The whole make way directly to locker/remember the combination/get the thing (or things) that was needed from locker and/or place the thing (or things) that was no longer needed in locker/close locker/find way back to where supposed to be thing?

Yeah…no. We can’t either.

Well what about the part where someone goes with them and oversees the whole thing – we’re so sure that will go over great in Middle School. Not.

Or maybe we could give them a list of the above steps to follow (read: give them a list to lose on the first day of school)?

Dear Universe, can you please O please manage this one somehow for the sake of our dear children?

Because this is one where our fear is mighty and legit, albeit probably incomprehensible to some.


6.      May our children learn Self-Advocacy –

For we are not omnipresent – and we are sometimes, we admit, exhausted. As well, mortal.
           
If possible, may they begin to integrate, for themselves, some components of self-advocacy development, however small, however basic: what questions will I need to ask to complete this assignment? Where will my challenges be and how can I access the help I need to be successful? What are my rights and responsibilities -  here, now?

If possible, may their Executive Function improve such that they are developing in awareness of what they need and how they may best be served in their own actions and in the resources available to them…

And, whether or not our children are mainstreamed or in more specialized programs, semi-independent or not-,


7.      May the help they are given be Helpful and not Non-Helpful –

Over the years there have been periods where I would begin to see some or all of G’s work and assignments written out in someone else’s handwriting. Dear Universe, as you are no doubt aware, G is able to write. Does it take him longer to write something than the average student or adult paraprofessional? Yes. Does he have dysgraphia and other learning differences around writing? Yes. Yet having someone do all his work for him is unequivocally NON-helpful help. I suspect the paras in question were trying to be kind, or to speed things up, make things easier for all parties…In any case I know they were not intending to deprive my son of a learning opportunity. But that is just what they were doing.

Dear Universe, some of us fear that in the larger Middle School context, it might seem easier to just sort of pass our kids through the system, using precisely this sort of non-helpful (to our children) help. This would be a great loss for our children.

May our children instead benefit from Flexible Support, where sensitive teachers and helpers recognize when help is truly needed but pull back to allow students to fly on their own where they are able to fly; sometimes, when necessary, fluffing up their feathers and wings, and, the rest of the time, letting students make their own, probably imperfect but unique and rewarding flights…

May we, the staff, their peers, and their teachers balance our children’s overt needs – for security, for routine, for “success” and success – with the myriad of wonderful possibilities for new experiences and learning out there in Your Universe, Dear Universe.

Big thanks.

Love,
Full Spectrum Mama


Tuesday, August 12, 2014

HEAVEN

Robin Williams - who anecdotally was on the autism spectrum  - was someone I've long seen as an Aspergian role model: someone I could point to for G as a person who was successful on his own terms, perhaps even because of his differences.

I was surprised by how sad and shocking I found his suicide.

I was one of many. A friend posted a recent-ish (2010) interview in the Guardian in which Williams' struggles to connect and succeed socially were striking. The interviewer stopped short of making fun of his accents, obsessions and tangents...but the undertone was perceptible.

Tonight at dinner, G began reading aloud in an exaggerated robot voice. I know people have told him he sounds like a robot. At that moment it hit me: perhaps Williams was using his multiplicity of voices as my son was using his robot voice -- essentially as an alternate or cover-up for his own quirky cadence.

I wish Robin Williams felt accepted and heard just as he was. I hope if he's in heaven it's a wildly, happily neurodiverse (and wildly, happily diverse diverse) place; I hope - if what happens is that we come back - that he comes back in a context that **unconditionally** accepts and celebrates him; I hope if this life was all there was for him that we learn from his pain.

I hope younger generations feel that  their own quirky, heavenly voices are valid, worthwhile, beautiful. Because they are.

Love,
Full Spectrum Mama


Tuesday, August 5, 2014

THE BURNING BRAIN

As a variation on the theme of the Sensory-Processing-Differences-induced Full Brain, I offer The Burning Brain:


     


                                                                Figure I – The Burning Brain

And just one little Burning Brain story among many: There was a family-welcome, community-building meeting for our local Autism Spectrum Disorders group a few weeks ago. I’d never been before because I always have the kids with me at night, but thought I would go since kids were welcome this time.

En route to the meeting, we stopped by our town’s First Friday celebration where there is art and music and stuff. That was our first mistake. Two events? What was I thinking?

I began to get a headache.

We arrived at the meeting and there was a ceiling fan! And bright lights! You can see where this is heading…And there were a bunch of very, very nice people, mostly educators and paraprofessionals, at whom I could not look. No other kids, but hey, my kids are a lotta kids.

By this point I could barely see or hear. I could feel the inflammation inside my skull (see above), and my head felt like it was about to explode. Just throbbing with pain. The fans, the lights, the conversation, the nice, nice people? Unbearable.

I drove home trying not to vomit, got home, vomited from pain…

One single burning thing I was able to think during this episode: I can only imagine how a child would handle this!

This is Sensory Processing Disorder: a relative overabundance of stimuli (whether of activities or sensory input) causes migraines for some people. This same overabundance can also cause some of us to feel overwhelmed with despair, or anxiety, or anger and - especially before we are aware of Sensory Processing Differences - to not know why we feel this way. Kmarie Audrey has written wonderfully about this subject here

Again, imagine how this process of Sensory challenges leading to emotional/social/physical pain and/or overload would affect a child! A huge meltdown or tantrum seems almost – dare I say it? -- ”under-reactive” in this context!

My son, who also has Sensory Processing Differences, tends to shut down, or get more flappy and loud than usual when in Overload Mode. I talk to him about it, and hope he will have the words and wherewithal to deal with it as he grows up.

Me? I mostly get Burning Brain these days. Once I am in that state (and by this point medications do not help) my migraine will amplify any sensory input so as to make the smallest thing (lights, sounds, smells, movement) literally agonizing.

On the most basic level, I get why a clothing tag might make someone scream, why swinging on a swing soothes some and dysregulates others, why seeing a bright color could cause nausea or even vomiting…

There is a great deal of skepticism around Sensory Processing Disorder (SPD), so I write this for those who cannot put their experiences into words as well as I can (at least in writing), and/or who do not have an audience. As an adult, I have a certain legitimacy, where a young child might not. I am able to be articulate in ways that a non-verbal or less verbal person might not be...As a college professor and an individual with some level of “success” in life I implicitly have the credibility that those who are even more profoundly affected by Sensory Differences might not be freely given by others.

SPD is not an “excuse” for me – I have a good life! – but it is very real and very challenging and as a label it does explain some of my lived experience. For some of us, including many children and people with autism/autistic people, SPD – while it may have its positive aspects (about which I have written before and will write again) – can make life quite difficult.

We may need help. We may need accommodations. We may need creative solutions and adaptations. We will need understanding.

Please believe us.

Love,
Full Spectrum Mama




Monday, July 28, 2014

THE F-WORD AND THE B-WORD

As anyone who deals closely with female children knows, young girls can be difficult. There isn’t a whole lot of “sisterhood” in upper elementary school, it’s more “survival of the fittest.” And Z is fit, oh yes, very fit.

Accordingly, that social piece is not a big fear for me, which is nice because for Spectrum Child Sr. it’s worrisome enough for two. But some of my major concerns about Z are nonetheless directly related to girlhood. I see her acting “cute” and using a demanding yet “girly” voice to get what she wants from lots of other people and it makes me uncomfortable. The undercurrent of my very visceral reactions to Z’s “bratty,” “manipulative,” “sneaky,” “spoiled” behavior always seemed to me to be apprehension about her Attachment Disorder and how it might affect her and make her act in these ways. But my darling friend Wise Ayi recognized a deeper source and schooled me on the root of these concerns.

I was telling Wise Ayi about a particular interaction of Z’s that I had observed and how it set me on edge and – I felt – reinforced Z’s unhealthy, Attachment-Disorder-related manipulative tendencies.

“Whoever that was with [Z] isn’t a feminist. That’s what was really getting to you,” Wise Ayi explained. Her words sank in with revelatory force, opening up a full-to-exploding can o’ worms.

I flashed on a big ol’ worm: the memory of being at a celebratory dinner when Z’s brother G got his Orange Belt in Tae Kwon Do. This was a huge occasion for G and I had invited my ex, who at the time was dating a very skinny woman with a 13-year old daughter who’d recently become alarmingly thin. We ordered scallion pancakes and my ex’s ex – in front of both of our daughters (and my son) – started going off about how they were “So fattening” and “all that saturated fat…” 

I was furious! All I was able to spit out at the time was “Some fats are good for you!” but I was steaming for days over the prospect of ex's ex “infecting” Z with that kind of body consciousness. It was my first intense encounter – I live in a very progressive community – with the idea that Z could be indoctrinated into such destructive aspects of “normal” girl culture as healthy girls seeing themselves as (and being seen as) “fat,” as diets and appearance taking center stage in girls’ lives.  

But here in the manipulative, “cutesy” behavior we were talking about demeanor, not exactly appearance – a more subtle thing, but another worm nonetheless.

Wise Ayi was right, as she often is...When Z is “sassy,” when she ends all her statements so they sound like questions, when she strikes a pose after speaking, she is implicitly buying into the construct that that is how girls get what they want. And it makes me cringe, -- partly because of the Attachment Disorder aspect, but much more, I now realize, because I am a feminist. Apparently, these affectations don’t make non-feminists cringe – but I think they should.

We all suffer when one half of the population is taught to be cute in order to get their way rather than owning their power.

Admittedly, in a way, this is a form of misogyny on my part, in that I don’t want Z to use “feminine wiles” to get what she wants. On the flip, non-mysogynistic side of this stance, I want her to succeed on her own formidable skills and merit.

I don’t want my daughter’s power to be gendered any more than it inherently will be by others – especially by her own actions.

“Feminist” should not be a dirty word or an insult, though it is taken as such by many. But “bitch” sure is. The voice of misogyny calls women in power “bitches.” Misogynous culture trains women with one insidious tentacle to be coy and “sassy” -- while with another it slaps them down for just such behavior.

Is it too idealistic or naive to hope that a straightforward, strong person of any gender might avoid the moniker “bitch”?

Perhaps.

Still, I want my daughter’s voice and actions to be as strong as her heart and mind. And I want her to CHOOSE her voice, even to subvert stereotypes -- not be trained by those around her to be “cute,” or celebrated and rewarded for being coquettish or cunning. And if she gets called the F-word or the B-word along the way, I want her to have the true meaning of the F-word – the knowledge (and the endeavor to disseminate this knowledge) that women are equal to men, and deserve to be treated as such – to fall back on… whatever she chooses to call herself.


Something funny happened on the way to this can of worms: I realized that “girly” behavior and Attachment-Disordered behavior have something extremely important in common:
The impulse to get what you need by any means necessary. In case you can’t. In case you don’t “deserve” it. 
So, along with a strong voice, I want for my daughter
the inner knowledge to take root and to animate her voice and heart

that she does deserve

that she can do

anything and everything.

Love,
Full Spectrum Mama