THE MEGA MASTER

Two weeks into this semester of Comparative Religion, a student called out at the end of class, “Dr. [Full Spectrum Mama], this is kind of a funny question but…are you [G]’s mom?”

It turns out that this fellow was one of G’s counsellors at a wilderness camp he attended this past summer. Because they hike up into the woods for camp, I hadn’t met some of the counsellors (the ones who were waiting mysteriously up at the Hogan every day).

My student, having watched me for two three-hour classes, said I “look and act exactly like [G],” so he “just had to ask.”

This gave me so much hope, because I am – despite my differences or because of them or some mixture thereof – totally fine. I don’t worry about me. But I DO worry about my son. And sometimes people think I over-identify with him, but this is because 1. I get him – profoundly, and, 2. I want him to be okay in the end, as I am.

I always tell people I was almost exactly like G at his age, but female, and people who’ve known me only as an adult don’t believe me, basically because they think G is  “more autistic” than they think I would have been. But I know, and I remember.

Heck, forget being “okay like I am” I would like to see – and do, often, see – G as being okay in different ways. And I would love for G to surpass me in the neurological department and anywhere else. Isn’t any parent glad to see their child out-do them? It seems like that would be a very visceral survival thing. Differences are welcome and celebrated in our family as well! When I see Z shining in her acrobatics class, doing things I can’t even imagine doing, I am beyond proud.

In addition to neurological and physical differences, we need to take into account temporal differences: when people presume that G will stay just as he is, rather than growing as I have and then some, I find it highly botherous.

In any case, G’s strengths and challenges resonate deeply with me, though I always try to respect his separateness and unique personhood. I currently am having an opportunity to distinguish between us in a major capacity, because…

The beginning of Middle School has been a breeze.

…Did I even just write that?

I have spent the last two to twelve years (depending on how you measure it) worrying about Middle School for my son -- at first because Middle School is usually dreadful; later, and in this mode much more assiduously, because of his social challenges.

Seventh grade was a low point in my life. There are a variety of reasons for this, but my social challenges would rank up there near or at the top. I was so painfully shy in my new school that I was unable to say hi to people. I didn’t want to insult them by implying that they knew me. But people took this as my being snobby! And that’s just one example!

Trust me - it was ghastly.

G has had some challenges, to be sure. The adjustment to lockers was…epic, and most of my concerns in Middle School Prayers remain relevant.  But the bottom line is he walks out of school every day waving casually: “Heeeeyy, so-and-so,” “Yo, dudette”…And people…reply?

Is Middle School better than it used to be? How can isolating children in one place at their most antisocial, brutal stage, while combining students from several elementary schools so that they are naturally forced to jockey for position and, therefore, usually, inclined to identify scapegoats, ever be good?

My seventh-grader rates every day an 8 or 9. His innate positivity?...Cluelessness? New and improved brand of Middle School?  I’m surprised – but I’ll take it!

As G headed to school today, his hands were wrapped in a homemade “Mega Master Mega Evolution” Bracelet for his imaginary Pokemon (Figure I).

          Figure I - "Hey Pokemon fans out there: this is [G], the Mega Master!" (Caption courtesy of G)

“[G],” I said gently, “you might want to leave that at home.”

“No way, mom. [Friend A{awkward, sweet guy}] and [Friend B{goofasurus maximus darling boy}]* will like it, and I don’t care about anybody else.”

I am so proud, and relieved beyond measure. Now what should I think about?

Love,

Full Spectrum Mama


* That's, count 'em, two friends. Two friends! 

THE COMPLAINT DEPARTMENT NEWS

It’s that special time of the year again when Partial (incomplete) Monochrome Persona (PiMP) begins to solicit COMPLAINTS on behalf of Full Spectrum Mama for THE COMPLAINT DEPARTMENT. Last year, we published COMPLAINTS of a very wide-ranging and accepting sort, in hopes that, by being COMPLAINED, said COMPLAINTS were rendered slightly less itchy, lonely, peculiar, injustice-esque, throbbing, tender,  and/or badbadbad.

New for 2014: a handy dandy COMPLAINT DEPARTMENT button, at right, where COMPLAINTS may be submitted year-round!

You will know it by its custom-designed "depressing rainbow" illustration, courtesy of Full Spectrum Daughter, Z:

COMPLAINTS received by early January will be eligible for the 2015 COMPLAINT DEPARTMENT post. As always, this commiserative, inclusive solicitation is not meant to imply that THE COMPLAINT DEPARTMENT is “open.”

Yours Truly,

PiMP

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

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

An InLinkz Link-up

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.

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