THE LINGO

Dear Persons,

A good friend texted me the other day to say her son had called someone a “midget” and that didn’t seem right to her. Did I know a better word? I didn’t, actually. I wrote back:

Oh dear. With these things I think the Most important thing is what the person him or her or their self wants to be called…Person-first language was/is a trend (person with autism, person with dwarfism...), but that hasn't entirely worked out either. I've heard "small person," but - ? Complicated. Pretty sure “midget” not good tho...

Have you read Americanah by Chimamanda Ngozi Adichie?

The startling revelation in this book, for most people, is that being black is a thing in the United States in a way that it is not in Nigeria…We grapple with race in this country in ways that some other countries don’t, because of our terrible history of slavery, because of demographics, because of ongoing racism…In other places, other characteristics separate or unite people! Sometimes communities even form over shared differences - neighborhoods or meetings where people share certain qualities that may alienate them in the mainstream of a  given context. 

Being different is an issue only because, while we all live in somewhat diverse environments,  there are in every environment traits that most people share or that are considered “the norm,” such as heterosexuality, “typical” neurology, “white” skin, “black” skin, cys-gender identity, biological-family formation, “typical”family structure, “typical” ability, shared nationality, and so on…

This is changing. 

I see people noticing how random and inherently unimportant such aspects of people are; I see people celebrating diversity; and I see people trying to approach differences with more sensitivity. 

Parents of children with differences or people with differences are sometimes seen as “experts” on difference, but mostly we are just used to being thoughtful about such things in ways that can be new to some.  

So here’s my main suggestion: ask. 

Ask people what they want to be called. 

If you can’t ask, do the research to figure out the most respectful way to say what needs to be said.

Mostly, just try to see people as whole people, rather than reflections of a particular aspect of their being. 

Thanks and love,

Full Spectrum Mama

P.S. Even “Voices of Special Needs” might be taken as offensive by some: who is speaking for whom, and why are these needs “special?” As a neurodiverse person and a member of a family formed by adoption, I speak out about these topics as someone who is fundamentally enmeshed in such identities and speaking from personal experience only; I share our experiences in the interest of spreading understanding and awareness and inclusion. 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

An InLinkz Link-up

PLEASE DON’T SAY YOU’RE SORRY...

Dear Persons,

Please don’t say you’re sorry when I tell you my son is autistic.

It’s like telling me you are sorry that my child is Black, or female, or was adopted: just plain wrong. Sure there are things about being a woman or person of color or autistic or having been adopted that stink, but none of them are intrinsic to the person living those qualities. They’re judgments and discriminations that are inflicted externally, not – at least not originally or inevitably - embodied.

My children are veritable rainbows of their own unique glory, neither defined nor necessarily limited by any one particular trait.

Just like everybody else.

Figure I – Veritable Rainbows of their own Unique Glory (with Partial Labeling for Instructional Purposes Only)

That is all.

Thanks and love,

Full Spectrum Mama

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

MIDDLE SCHOOL PRAYERS REVISITED, REVISITED

I take it all* back. I am terrified.

Universe, please watch over and protect our bumbling, quirky, not-so-grown-up, growing up children as they head back into the fray.

Thanks and love,
Full Spectrum Mama

* http://fullspectrummama.blogspot.com/2015/08/middle-school-prayers-revisited.html

EFF

            For “Autism Awareness Month”…which most real live autistic people and parents of kids on                             the spectrum feel should be called “Autism Acceptance Month.”

My friend Heather, @ Changed for Good, wrote a companion piece to this one; please check it out over at: http://changedforgoodautism.blogspot.com/2015/04/day-28-acceptance-is-not-awareness.html

I received this email last month:

[Swan Ayi {Auntie Swan}]

to me

Odd, NH [New Hampshire] Senate just voted to have Autism Spectrum Disorder printed on individuals' drivers licenses.  What's the point of that?

My reply:

[Full Spectrum Mama]

to [Swan Ayi]

EFF you, NH.

Hers:

[Swan Ayi]

to me

Agreed.

This is flat out DISCRIMINATION.

Suppose you heard that from now on all blonde people would be stigmatized in this way? Or all people with depression? Obviously, some blondes (depressed people…) may be precise, single-minded, “excellent drivers,” but others might have trouble focusing, or erratic behavior, or compromised intellectual ability, or – who knows?

Yes, they passed the rigorous driver’s test same as everybody else with a license. And, true, some blonde or depressed people might not need to have this factor listed on their licenses, but since some blonde and/or depressed people are “different” -- and therefore possibly dangerous drivers – the state of New Hampshire needs to make their condition perfectly clear to cashiers, police officers, airline personnel, restaurant servers, and so on…just in case.

No, I am not going to address the possibility that being autistic might affect some individuals’ driving or demeanor. So might being tired, or being an a-hole, or being worried, or distracted…

G’s shift to confidence has been so gradual, so delicate, so life-changingly wonderful. What does a ruling like this tell him and the rest of us on the spectrum, many of whom work so hard for our confidence and accomplishments and inclusion in a neurotypical world? As lame and wrong as they may be, such rules send a strong, potentially devastating message.

I’ll be letting those politicians know where we stand: My family, for one, will be spending as little time and money in NH as possible following this decision.

Love,
Full Spectrum Mama

Third Anniversary Lists IV: The Complaint Department

Welcome to the Complainable COMPLAINTS of 2015. I am your guest host of this blog post, Partial/incomplete Monochrome Persona, or PiMP. Full Spectrum Mama usually takes the free time afforded her by my guest posts to sleep and grade and eat the necessary chocolate to prepare to teach long, hopefully non-boring philosophy lectures travel to exotic locales where she combines saintly deeds with sybaritic indulgences. So here we are, just you and me, dear reader…ready?

Almost a year ago, following 2014’s COMPLAINT DEPARTMENT, PiMP got a COMPLAINT for apologizing to a Complainant about something cruddy in their life. This Complainant argued that such soothing and comforting hogwash was not PiMP’s way and I agree. Here, COMPLAINTS are about being heard -- not being answered sweetly  or fixed, especially when THE COMPLAINT DEPARTMENT (TCD) is only officially open one day a year (on the 32^nd of Nevruary).

This year, your COMPLAINTS are all jumbled together, from pathos to bathos, giggles to grumpers, from COMPLAINTS about difference to COMPLAINTS about conformity to COMPLAINTS about, well, shopping…

We accept ALL acceptable COMPLAINTS here at TCD, and then we COMPLAIN them; although sometimes, people, you should stop flapping at the jib in public.

COMPLAINTS

* Let us begin with a deceptively innocuous COMPLAINT from FSM herself, who has shared many of her COMPLAINTS in previous posts, although she is saving up some doozies: I could be doing any kind of housework and the kids are nowhere to be seen but the instant I reach into my secret [medically-necessary] candy stash  -- “What are you doing, mom?” – here they come!

* My complaint is I am too overly busy to complain.

* Online adoption groups that act all surprised that people are curious about inter-racial families.

* This. Winter.

* In dealing with the oh so numerous challenges of adult life (single parenting, chronic illness, work stress, etc.), as the parent of a child on the spectrum, I am held to an absurdly high standard.  Spectrum-y kids use their parents as a barometer, often co-regulating off of us, so we can never, ever lose it, or even falter a little, without throwing a wrench into an already challenging situation.

(NB: Neither Full Spectrum Mama nor PiMP wrote the above COMPLAINT?!)

 * Some special angel who has a son with Sensory Processing Differences sent PiMP an entire LIST of COMPLAINTS – MWAH!

Complaint #1: I HATE that he bites his hand. It drives me CRAZY!!!

Complaint #2: I HATE that he hits our puppy when he gets mad at her. She is a puppy and when she chews on something of his or tries to steal his food, he hits her causing her to go into attack mode.

Complaint #3: I HATE that he jumps up and down, biting his hand and holding onto his sister's head. Oh...and she hates that too.

Complaint #4: I HATE that we have no OT services in our area and have to try and make time to do all of it at home (except for the 30 minutes per week through the school district).

Complaint #5: I HATE how I feel like I am ridiculed for my parenting skills.

Complaint #6: I HATE unsolicited advice.

Complaint #7: My biggest complaint is that I still don't know or completely understand all of his triggers and what will send him into meltdown mode.

* My biggest complaint is the school system in ignoring undiagnosed children who have obvious learning disabilities, and blowing them off

* Family/"Family"

* Competitive Parenting

* The magnetic force that draws children/husbands toward their mother/wife when said mother/wife most wants to be alone.

* The crust that forms on maple syrup bottles after a few weeks and makes it impossible to close the cap all the way.

* Not having time to head outside to enjoy that heartachingly beautiful hour between 2-3pm on a sunny winter afternoon.

* Not being able to prevent pine needles from getting everywhere when you take the Christmas tree out, and having to do it anyway.

* Mucus. The sidewalks and stairs to and from my workplace, restaurants and shopping areas are all dappled with glistening puddles of sluggy oysters in such concentration that it's nearly impossible to preserve ones shoes.  Men of the earth:  it should not be news that this makes you more a vector of viral plague than a testosterone bomb.  I am not convinced of your genetic superiority by the volume of sputum you produce.  Furthermore, It is uncivilized to leave a trail of bodily fluids in your wake.  Please knock it off. Just swallow it already.  Keep your contagion to yourself.

* Husbands who are so Modern/Liberated that they don't mind their wives bringing in most of the income.

* People who stop their cars to force you to jaywalk on their terms. Dear Driver:  My skilled sense of timing was finely honed by the great city of Boston.  I am not a squirrel.  I need neither your permission nor your help.  So, piss off.  I'll cross when I feel like it.

* I hate oatmeal. I hate it. Every morning. Healthy. Disgusting. Hate hate oatmeal.

* People who say "no problem" instead of thank you , or you are welcome.  This isn't new, and it is getting worse!

* My son with Asperger's is just starting to understand the subtleties, ups and downs, and fluidity of friendship.  I am thrilled -- that's not my complaint.  My complaint is that he is looming on the cusp of puberty, and the rules he has worked so hard to learn and understand are about to start changing and shifting at a crazy fast rate. I don't think he can keep up.  Not only that, but before he got the hang of friendship, he wouldn't have cared.  The double-edged sword of helping my kid to a higher functioning level is that now he will notice and care more when he is not successful.

* I hate it when you are paying for something and the cashier asks you if you would also like "something else." Why would you?  Or asks u if you want to contribute to the supermarket charity? No I want to pay for my @/&;@$ item.

* Not enough snow [flag: unacceptable COMPLAINT]

* Non-stop Christmas music -

All day,

24 hrs.

Including the Salvation Army ringing the bell before Thanksgiving and you feel guilty because they are nice to you.

* Supermarkets don't want to double bag and the managers come over to tell the staff not to and the bags are thinner than ever.

* Men's bathrooms run out of soap all the time and how are the employees washing their hands?

* Professional offices where they have the large TVs on with news blaring.

* When you buy newspapers and they have all the ads and flyers in them, or when you buy a magazine and they have all those subscription things in them, and they all fall out.

* Cereal boxes that are hard to open inside and you rip them and the cereal explodes.

* I think we should find the person who invented the halogen headlight for automobiles, strap him to a chair, tape his eyelids open & force him to witness the birth of a star... From six feet away.  Because that's what my drive home is like.

* Having my early morning time (that I only take once in a blue moon) invaded by breakfast needing children would certainly be high on the list if I was compiling it today.

* Parenting a special needs child can put a hell of a lot of strain on a romantic relationship.  Mine didn't survive it (the relationship, I mean -- the kid is thriving).  Undoubtedly, there were other reasons the relationship fell apart, and I will never regret putting my children first, and parenting my children is the most important thing I have ever done -- but I just needed to complain about how hard on a relationship it can sometimes be to parent these wonderful, challenging, different kids.

* My friend received her new “County Gardens Magazine” on 3/13, while I received mine several days later.

* You are the only parent at every school event, every meeting every everything. Your ex calls during one such event – an event you have notified him of several times even though you yourself only know about it from investigation and hearsay – and leaves a message saying he just got your message and nobody ever tells him anything and so naturally he is not at said event, because it is your fault. Because, you know, he is very special and should be sought out and personally informed by both you and your child’s large, urban school, of every event that might interest him.

Then your kid asks if he can call his father, so of course you say yes. He tells his father, “Sorry you were unable to make it. I love you.” And gets off the phone. Then your kid says, “Isn’t dad awesome?” And you crack: “You know who’s awesome?” you say, “the person who drives you everywhere, who attends every event you have ever been part of, every meeting, every school supply trip, every, everything. And you know who else is awesome? the kid who forgives someone who lets him down! THAT is who is awesome!”

Later, you say. “Yes, honey, your dad is awesome.” And your kid says, “You used to think he was awesome, didn’t you?” and you say, “When I married him I did, but…and I still do. And he loves you very much.”

* With three sons I worry about each one having the same struggles the oldest one has. It took until he was in middle school for him to get a diagnosis.

* Dear Complaint Dept.,

I have diarrhea.  And I am at work.  Every time I run to the loo and attempt to achieve a modicum of relief, two people walk in.  I’m outraged, bloated, embarrassed and lurching.

Thank you,

Crappy Complainer

* People are so in search of acceptance and approval.

This concludes the COMPLAINTS for 2015.

It’s never too early to begin feeling outraged for 2016 – so bear in mind that while TCD is rarely open per se, COMPLAINTS are always being reviewed for possible acceptability at jineffable@gmail.com.

Sincerely,

Partial/incomplete Monochrome Persona

Factotum, THE COMPLAINT DEPARTMENT

Guest writer/Troubleshooter @ Full Spectrum Mama

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

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

HOP N SNACK

You know what? I started a whole heartfelt response to Autism Speaks' terror mongering, homogenizing "Call to Action," along with everybody and her mother.

Then, while I was bounding around, naked, hemorrhaging some of the 2.3 million dollars - each - it apparently takes to raise me and my son, I found, via my friend One Quarter Mama (http://www.onequartermama.ca/2013/11/wondrouswednesdays-hop-n-snack.html#),  a response that will be hard to top:

http://wayshelter.com/Toolbox/InitiativeAction/Hop_n_Snack.htm

Hopping and snacking -- hope you are too, ya deviants,

Love,
Full Spectrum Mama

Oh, Thank God, YES!!!!

Not long ago, I ran into someone I vaguely recognized at an event the children and I were attending. As we purchased tickets, I remembered that we’d met maybe six or seven years ago and that she’d had a son who at that time was being evaluated for some differences. G hadn’t been diagnosed with autism then, but had been tentatively labeled as having a Sensory Processing Disorder (SPD). *

With G and Z sort of doodling around behind me, I initiated a brief conversation with this woman:

Me: ““Hi. You’re blah blah, right? Yes, I think we met over to the blah blah when our boys were little…”

She: “That’s right! How have you been?”

Me: “Great, thanks. You? Do you still live on xyz street?

She: “Yes.”

Me: “And didn’t you have a son with asperger’s or something like that?”

She: “Oh, thank god, no!”

CRINGE.

I look around immediately, furtively to assess damage. G’s back is to me, uncharacteristically still.

What do I do????

First, I say, helpfully, “Well, I do. Have a son with asperger’s. He’s really great!”

“Oh…Sorry!”

Awk-ward.

“Yeah, um, no problem. Really, it’s…great…See ya…”

Next on the agenda? Make a list, of course!

Why I thank whatever forces in the Universe brought me this child who is the best kid (boy division) I have ever known (abridged version)

He is super-kind

He always tells the truth

He is generous

His attempts at eye-rolling show just how little of a real eye-roller he is

He is goodhearted

He is selfless and has no guile whatsoever

He doesn’t care what people look like

He doesn’t care what people have – money, status, possessions

He loves his teachers and makes them feel extra-appreciated

He is a gentle warrior for justice

He would never intentionally hurt any creature, except in self-defense or defense of another

He loves animals for the whole, worthwhile beings they are - with all his big heart

He always does what he says he is going to do

He always has good intentions

As they say, “If you know one person with autism, you know one person with autism.” But I can safely say that ALL the people I now know with autism – though they are as different in size, shape and temperament as any other bunch -- share these traits.

Well, some of them may be better at eye-rolling than G. But not much.

A dear friend recently shared a blog post with me where a mother was expressing her anguish about her child’s SPD* diagnosis (http://www.scarymommy.com/somethings-not-right-with-our-boy/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+ScaryMommy+%28Scary+Mommy%29) .

Sure, anguish is a piece of the autism/difference picture  – but for me (and most other people I know with autism and parents of children with autism) it’s anguish about how the neurotypical world will treat us/them, NOT about the “condition” itself!

I’m not saying this discrete anguish is wine and roses, baby -- it can get you down. But it is separate – at least for me – from feeling that something is WRONG with my boy (or me, or my friends, or their kids…). 

For many of us, getting through the diagnosis and labeling morass, and, dealing with well-meaning and/or thoughtless ignorance are the grueling bit.

Not the autism.

And so I say unto you, Praise the Universe, YES, I do have a child with autism.

Love,

Full Spectrum Mama

* Sensory Processing Disorder is generally related to the autism spectrum, although not considered on it per se. These two neurological conditions may co-present in some individuals.

"Mom, try to find me!"

First, the corny bit: I walked into the ocean late this summer in a foul mood and, seeing how vast and impervious she was, had the tremendously novel idea of dropping my burdens into her salty depths. Then, crying and exhausted and overwhelmed and a little relieved, I sent out a prayer/question, “How do I live a life of peace?” The answer washed over me right away: “The way to live a life of peace is to live a life of peace.” I probably read this in a Dalai Lama book or some such but still it actually sank in at that moment.

The answer was simple, maybe obvious, but, for me, to truly feel it was revelatory. As an erstwhile yoga student and teacher, I have often noticed how many times we humans can hear the same thing but never really listen. One day, if we are lucky, we actually hear a teaching – “Listen to your breath,“ or “Relax your diaphragm or “Let go”…”  – and it’s, um, deep.

So of course I then thought to ask ANOTHER question, because I am greedy like that. “Okay,” I conceded, “That’s a great idea, but just how exactly do I ride the waves of my amazing yet zany life?”

“Ride the waves,” came her reply.

Now it’s good old back to school time and the waves are in full force. G hearing me say “It’s almost time to go,” and slipping his sneakers on the wrong, sock-less feet and running out the door in his underwear and pajama shirt, Z making her teacher wait an extra ten minutes at the end of the day because she is “helping” her friend pack her backpack and making sure she, Z, is in total control.

At the end of each day, I try to sort of gather together the turbulences – good and less-so -- of the day and settle the clan into a smooth, peaceful sleep.

First comes Z’s bedtime routine. Since she has excellent executive function, she can be given ten steps at once and she will follow them -- efficiently and in order. She might potentially add two or three nefarious and unwanted (by parent, teacher, etc.) steps as well if left to her own devices, but she can keep lots and lots and lots of instructions and information in order in her mind. She needs no prompting to follow an impeccable bedtime routine in which all the right parts get cleaned, voided, brushed and rendered ship-shape.

Yet putting Z to bed is sometimes an unhappy time, a time of struggle. Most days, worrisome and/or upsetting behaviors have occurred and I wonder if I should process them with her at bedtime.  As I am tucking Z in, I may remind her of certain things I am trying to teach her. Just as many social rules that seem obvious to neurotypical people do not seem naturally clear or obvious to people with autism, Z, as a small person with an attachment disorder, needs help navigating the ethical universe most people try their best to share.

I might tell her, “You need to follow the same rules as other students, like when it is time to leave the classroom everybody leaves together,” or “During school it is a time to listen and respect your teacher.” Variations on the phrase, “Telling the truth sometimes seems harder than lying but in the long run it’s a better thing to do – and you will get in less trouble, too!” are frequent contenders for this nighttime slot.

I always try to remember to add, “Tomorrow will be a better day,” especially on the really rocky days. After all, hope is so important! As defeated as I may feel, I also try to sing her a song, sometimes a very short song, and give her a kiss. Then I escape before she can get me with “puny arm!” (If she puts her [puny] arm around me I pretend to fall asleep.)

I know rationally that the primary caregiver is the one with whom the child with an attachment disorder displays the most reactivity and testing. Some nights, though, I desperately wish we could just snuggle, that my snuggling wouldn’t feel like it was transcending another rough day, that it would just feel simple.

You know, like living a life of peace. *

As Anne Morrow Lindbergh says, in Gift from the Sea, “Don't wish me happiness --

I don't expect to be happy all the time...It's gotten beyond that somehow.

Wish me courage and strength and a sense of humor. I will need them all.” With this daughter of mine, how I pray for courage and strength and – above all - a sense of humor.

Then it is bedtime for G. G does best being told one to three (max!) steps at a time and is very literal. His bedtime routine requires some oversight to make sure he enacts the most basic aspects – brushing teeth, using the toilet…Order of direction is important, too: he will not think twice about taking his fluoride pill before brushing his teeth, for example, if that’s the order in which they are mentioned.

After he gets ready for bed, as I am walking into his room, G often runs in, leaps into his bed, pulls the covers over his head and shouts, “Mom, try to find me!”

”Mom, try to find me”??? I am sitting on the edge of your bed, from whence your voice is clearly issuing!

I hate when he does this. It makes me catastrophize and project that he will never, ever be able to be all right on his own.

But on this particular night of which I write, the night of the leaving-the-house-in-underwear day, I – as usual -- laugh and tickle him and cuddle up to tell his nightly story:

Once upon a time, there was a brave and noble knight named Sir G-ahad, and he was known far, far across the land for saving unicorns, and seals, and anything else in need, and for being a little bit different, and for being brave and kind. [All of his stories start in this way.**]

One day, as Sir G-ahad was sitting in the court at Camelot, a beautiful Princess came running in and cried, “Sir G-ahad, Sir G-ahad, a terrible dragon has stolen my unicorn!!!”

Then she looked at Sir G-ahad and started laughing because Sir G-ahad was in his underwear and a T-shirt and the shirt was tucked into his underwear. AND he was wearing his noble knight boots on the wrong feet and without stockings! The Princess was laughing so hard she lost her faith in the brave and kind Sir G-ahad and left to find another champion for her cause. [G looked very sad as I told this part of the story.]

Well, that Princess searched far and wide and no knight was able to help her, though many tried and failed, because no knight was quite as brave and noble and kind as Sir G-ahad. Finally she returned to Camelot, and found Sir G-ahad at the round table wearing a more normal outfit.

“I am sorry,” the Princess told Sir G-ahad. “I think I have learned my lesson that I should never have judged you because you were a little bit different.”

“You were right in a way too,” admitted Sir G-ahad. “A knight should pay at least some attention to his noble attire.”

That said, Sir G-ahad set off on his noble knight steed, Corny the unicorn, found the terrible dragon, drew his mighty sword and – lickety-split -- the dragon ran crying home to his Mama.

And everyone said, “Thank you, Sir G-ahad. You saved a unicorn…again.”

I sing him a little song and eventually start to get up. G grabs me and almost knocks me out with a headbutt from his giant, rock-hard head.

“Oh, G,” I groan. “Can you please try to be more aware of where my body is?”

“I don’t know,” he says.

Fair enough.

There’s a lot I don’t know too. Our Full Spectrum runs from the gifts and challenges of aspergers to the wounds of -- and efforts to heal -- reactive attachment disorder. Before either of my children had a label, I spent even more time feeling tumbled in this ocean of parenthood. A lot of parenting advice besides

1.     Love your children, and

2.     Be consistent

is useless in my situation. At least now I know why a lot of the standard stuff doesn’t work  -- and a few things that do, thanks to the insights that came with those labels. Now I also know “ride the waves” and “live a life of peace,” which feel like they can be applied to just about any situation if I can remember to do so amidst the unruliness of daily life.

Waves, try to find me! I’ll be hiding under this here Living a Life of Peace blanket,

Love,

Full Spectrum Mama

* Joke.

** Z gets the same format: her chivalrous deeds are done under the banner of Sir Shawty.

Tripping

We visited Great Gram in North Carolina for school vacation week. Although my beloved Gram looks to me like the most beautiful person on earth, the children were naturally wary of the old, bony lady lying in a “rest home” bed. G had grown up knowing her well, but in more vital times; she’d been declining since Z’s arrival home. After adjourning to the hallway for a wee chat – to wit, FSM hissing, “I know she looks a bit scary but she is your ancestor and neither of you would be here if not for her and she loves you even if she doesn’t always know who you and this will probably be the last time you see her so get in there and give her a hug!” – a decent amount of sugar ensued, after which we set out to explore the area.

Traveling with G and Z seems to exaggerate some of their atypical ways of coping, simultaneously highlighting their anxieties and differences while drawing out their remarkable dual propensities for joy. I kept noticing how -- despite Pardner’s and my sometimes near-constant admonitions (to “not hug strangers,” to “not take your clothes off here,” to “listen and allow the tour guide to speak…” (at the International Civil Rights Center & Museum - http://www.sitinmovement.org/)  -- both children possess a huge capacity for laughter and making things fun. 

Of course, being my Full Spectrum babies, they express this in their own special ways. In an unfamiliar environment, G copes with total pokemon immersion, embodying different personae for each situation.  Self-regulation in terms of appetite, sleep and so forth go out the window, and parental regulation becomes more crucial. He rises above largely by crafting pokemon-based jokes at every turn.

Z copes via incessant planning, especially of destinations and menus, as well as by recruiting any likely candidates (candidate pool: anyone who thinks little girls are cute) for unbridled, extensive conversation and free samples. Regulation of environments – social, internal, spatial – becomes paramount. She lightens up, though, with abandon -- and a scurvy belly chuckle for her brother’s every pokemon joke. 

This tendency toward enjoyment – heck, let’s call it Play -- was delightful to see. It functioned, too, as a counterbalance for my realization that my children have a great deal to learn if they are ever to function well outside of their comfort zones.

In our Full Spectrum, strengths and weaknesses are integrally connected. Case in point: We are driving around and realize we have gone the wrong way. Pardner announces that he will have to make a U-turn. Z announces, in her inimitably regal way,  “I don’t want to make a U-turn. I want to take a ME turn.” We – all of us -- laughed about this for the rest of the trip, even though the fact that it was actually true for Z was mildly disconcerting.

Now that both children are in school, spending twenty-four hours a day together was freshly grueling and amazing. Each late night would find Full Spectrum Mama and Pardner lying on the bed staring vacantly at the Holiday Inn television with mouths agape, shell-shocked, knowing full well that G and Z would start their preliminary grunting and fidgeting around at five in the morning…yet nonetheless unable to sleep.

This experience has confirmed my long-standing hunch that traveling with kids should henceforward be referred to not as vacation, per se, but as “tripping.”

The day we got home, I was thrilled to see an article in the local paper about a child in a neighboring town with autism who was graduating from high school and exploring his next steps. I expected to learn about resources in our community and people with whom I might connect. I began to feel sick to my stomach as some of the language in the piece sank in: “trying to determine what was wrong with her son” was the phrase I still cannot shake.

Language around disability is so loaded. Labeling and differentiating language may be useful in accessing services and, in some contexts, increasing understanding. But great care must be used. Although all those involved in the article must have meant well, I remain disappointed by the overall implication that there is something about people with autism that needs to be “fixed.” Such language might fittingly be used in some cases of attachment disorder, an often dis-abling condition that results from difficult circumstances and which may, with luck, ultimately be healed. Autism, in contrast, involves – among other things -- different ways of perceiving, processing and interacting with the world. These modes may well be held as equally valid to those of neurotypical individuals.

Maybe this is not the current mainstream, on-the-streets perspective? After all, there is a vast spectrum of variety in perceiver and perceived...especially with children who are remarkably hard to miss. 

Two new spectra coalesced from watching G and Z interact with strangers during our trip.  For G, a spectrum of tolerance emerged; for Z, one of engagement.

Figure I – Reaction Spectrum: Tolerance                    Figure II – Reaction Spectrum: Engagement

Adults tend to be engaged and/or charmed by Z. It can take quite some time before they realize – if they ever do – that they have been embroiled in a long, in-depth discourse with someone barely three feet tall and six (“six and a half, Mama!”) years old. This stage we will refer to as “disbelief.” Her relentlessness sporadically results in annoyance and more or less successful attempts at extrication. More frequently she is adored, even worshipped, for the tiny deity that she is. Obeisances are offered and accepted. Thanks will be proffered by Herself…if prompted.

The attachment disorder specialist with whom we are working recently told me that it is “harder for the really charming children to get the help they need because they get away with so much.” Z presents a scintillating exterior that diverts her adoring audiences’ gaze from her inner pain and her external transgressions. With inner healing, perhaps her dazzling shine will become more of a comfortable glow. 

The general adult-stranger reaction to my aspergian son seems to be one of tolerance. More negative reactions to his sometimes over-friendly or otherwise inappropriate behaviors include confusion and even anger. On the other hand, a decent proportion of people will go slightly out of their way to accommodate him – and a select few seem to truly appreciate his openheartedness and originality. There are even those who seem to celebrate his free spirit and flailing body.

The spectrum of stances taken by his fellow children, they of lesser patience and knowledge, veers slightly more toward perplexity and annoyance. With both adults and children, however, I get a lot of questioning glances, raised eyebrows and rolled eyes. I try to deflect such unspoken queries both because (this is one of many things I have learned about myself in parenting a child with autism) most direct eye contact makes me uncomfortable and because I demand that G be accepted on his own terms.

After one particularly stressful day in North Carolina, Pardner wondered whether “everybody has to, in some sense accommodate G.”

I disagreed: “I think the people who get G really get him!  If everybody were like G, the world would be a much better place. But,” I conceded, “much, much messier.”

I suppose I fit into the celebratory faction. Unlike the mother quoted above, I have never thought for a millisecond that there was anything “wrong” with my son. Calling someone “differently-abled” may be a cliché, but it is also deep truth.  The gifts of truth and heart and generosity that come with G could never be compensated for by “normality.”

One of Rudolph Steiner’s first students was a boy with autism. Steiner came to believe that people with autism were partly still in the angelic realm. That is, their engagement with the mundane world was limited because of an ongoing partial immersion in another dimension, one closer to source/truth. Thus the calculations and deceptions of ordinary people are alien to those with autism.

Steiner remains a controversial figure. I both agree and disagree with Steiner’s stance on autism: for one thing, the word “angel” can be a polarizing one; for another, people with autism are as varied as those without it…Yet there is something to be said for such a positive view of this “disability.” Stay tuned: perhaps another spectrum or two is called for.

Whatever their religious, philosophical or personal status, those people who wholeheartedly accept all children are angels to us. Neutrality is fine too, though surprisingly rare.

Love – and never colluding with the eye rollers,

Full Spectrum Mama