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


Thursday, July 17, 2014

RIDDIKULUS!

G’s latest invention is a Lego Boggart game. Boggarts are a type of magical beast in the Harry Potter books known for taking the shape of your greatest fear. In The Prisoner of Azkaban, the students learn how to conquer boggarts by facing one who is kept temporarily in a wardrobe in the teachers’ lounge.

G attached a spinning tube to a play board. You spin the spinner around and something appears -- “like the boggart coming out of the wardrobe.”  G spun the “wardrobe” to reveal a headless Lego guy mounted on the back with a scrap of paper that said “[G]” on it.

“That’s your greatest fear, Mom: a headless or dead [G].”

GULP. Yes.

I love my children equally. But Z will trounce anyone or anything that gets in her way, while G has a more tender, awkward way in the world. So I don’t really worry about Z’s survival. Whereas G could trip over his own foot and fall off a cliff, and he’d be yelling “Love you, Mama!” as he fell, just for example, not that I am actually thinking of this scenario.

Then another spin: “This one is [Z’s] greatest fear: a dead Mama.”

Um, whoah. The label now reads “Mom.”

Right again! It’s becoming clear that G is a LOT more perceptive than he lets on, or than he – not being a verbal processor -- can express.

Z’s greatest fear may well be losing me, as she is a most devoted daughter despite some of the challenges of our relationship. I am struck lately by how little she resents me, in spite of my (attachment-disorder-dictated) extraordinarily strict boundaries and constant monitoring. I am all over her like white on rice (I guess in our household I should say brown on rice) to make sure she feels safe, stays within important boundaries, and does right. And – unlike many strangers and even loved ones who look askance at therapeutic parenting -- mini-girlfriend just gets it. She knows her Mama does this all for her. She knows she needs it, maybe even better than I do. And she loves and respects me above all.

“And here’s mine, Mom…Mom?”

I’m still speechless.

“Here, look!”

I dare to peek: his scrap reads, “pokemon never existed.”


                                                     Figure I – “pokemon never existed.”

“And don’t worry, Mom. I made the spell to fix everything!” says G. Then, as he learned to from the book, he declares, “Riddikulus!”

Another turn, and the clasp on the side of the tube holds a scrap with a funny face.


                                                                 Figure II – “Riddikulus!”

Harry and his friends know the trick with your greatest fears is to make them funny.

Apparently, so does my son.

Love,
Full Spectrum Mama







Tuesday, July 8, 2014

THE HEAT PLUS THE FEELING

After reading my last Sensory Blog Hop post, Whistle Nose, our friend Noodle Ayi (Auntie Noodle) talked about how part of having a hard time naming and interpreting emotions (Alexithymia) is also related to not knowing how emotions feel in our bodies.

Huh? Hadn’t even thought about that! For the Full Spectrums who are on the Autism end of our spectrum, both of whom have Sensory Processing Differences, knowing how an emotion feels in our body AND having a feeling at the same time AND functioning will be a lifelong project.

Here’s a recent example: G’s Graduation from 6th Grade, about which I’d been very apprehensive, primarily because I thought I would humiliate him with my sentimental sobbing. What actually happened was VERY Sensory, but also unexpected.

G cried, ceaselessly through his entire graduation ceremony. Big blubbery tears, shaking, trying to stop, humiliated, heaving, producing copious liquid from nose and eyes.…on the stage.








Figure I- G: SPD/ASD Child: 
Heat Plus Feelings (Crying) Equals Full Brain











To stop crying would have taken some extra capacity he simply did not have, what with the Heat and the Crying/Feelings.

Z – our resident Neurotypical, who’s also on the no-nonsense end of the spectrum -- asked, repeatedly, “Why is he crying?” Not so much with scorn but sheer bewilderment.

I didn’t cry at all.






Figure II – FSM: SPD/ASD Mother: Heat Plus Feelings (Psychicly Messaging G to Try to Stop Crying Plus, Especially, to Stop Overtly Wiping Giant Gobs of Snot on His Arm) Equals Full Brain







To cry would have taken some extra capacity I just didn’t have, what with the Heat and the Sweetie-Can-You-Stop Feelings. 

All my energy was channeled into trying to get him to calm down and breathe – complete with “useful” facial cues – and to stop, just - PLEASE, for your own sake son! -- with the snot.

So many adults came up to me afterwards and said how touching his crying was, one spoke of his “pure heart,” but I know he felt terrible. It couldn’t have been a big status-builder with his peers.

G’s an old sap from a long line of softhearted saps, and this event was overwhelming on a myriad of levels. Being hyper-empathetic, I think he was feeling and expressing what so many in that room were feeling and not expressing. And it was a huge year for him, finally feeling like he belonged, in unprecedented ways.

Most of all, the heat in that room was so overwhelming that for both of us it was almost impossible to function. I am sure it was awful for everybody, no question, but with Sensory Processing Differences the brain simply cannot prioritize in the “normal” way.

Heat plus another thing? That is IT.

Then G got REALLY SICK. Fever, nausea…I think the latter might have had to do with his eating four desserts during the “refreshments” part, but I genuinely think the fever was his feelings in his body. This scared me, because I, too, get my feelings in my body – and I ended up with rheumatoid arthritis, one of the few diseases known by western, mainstream medicine to be in many cases the result of trauma.

In these ways SPD is so closely linked to our emotions. If we can better process our feelings, we will be exponentially healthier – body and mind.

But if you take even just this one little scenario, Heat plus Tears or Not-Tears were maximum-capacity situations for us. Noodle Ayi’s sage thoughts around figuring out how emotions feel in our bodies were one order above where we sat, blubbering and not blubbering, in that hot room.

There was no
“how does my body feel right now?”
never mind
“what is this emotion my body is feeling?”
never, never mind
“I am feeling this way, which represents…”

For some people with Sensory Processing Differences, even ONE of those factors might be enough, as in: Heat = Full Brain = Go Home, or Big Feeling = Full Brain = Tantrum.

So you can see where it might be nice to have strategies to manage all sorts of scenarios involving, oh, life. It could be extremely helpful to be able to use another tool to discern how we are feeling, from the way our bodies are feeling.

The first step for our Full Spectrum family, though, has been to acknowledge and begin to understand how we process experiences in ways we could not fathom before knowing we had Sensory Processing Differences.

I’m feeling….hopeful?

Love,
Full Spectrum Mama