Tuesday, May 12, 2015

TEACHABLE MOMENT

WE ARE NOT YOUR TEACHABLE MOMENT


We are a Colorful Family. When we are out in public, we are usually the ones people are looking at. Because we are unusually attractive. OR, perhaps, because one of the kids is usually doing something "interesting" and one of the parents (usually me - Pardner is a chef, and chefs quite a lot) is usually doing something "creative" to try to channel the "interestingness."

I’ve realized over the years, because I find myself staring when I see families with differences or public challenges, that some people—like me -- look on with identification and empathy.

Some look with scorn and judgment (those guys don’t even deserve this sentence).

But the other group consists of the ones who want to use my family to teach “tolerance” – which feels a little condescending -- or those who (much better) are aiming for respect and acceptance, whether of neurodiversity or ethnic diversity or any other inclusive impulse…

Um, may I just say that being anyone’s “Teachable Moment” can be a wee smidge annoying? But okay, I get it, people.

So here’s my Lesson Plan for this Teachable Moment:


                                           Figure I – The Full Spectrum Family Lesson Plan

Guess what. It's a spectrum. Is yellow "better than" violet? No. Red vs. green: who wins?

Nobody.

Neurotypical's not better than neurodiverse -- and vice versa.

White? Brown? Peachy keen? Melungeon? Different?...Equal.

Orange? Blue? Indigo? Sensitive? Impervious? Female? Male? Trans? “Normal?” Weird?” Can’t tell?

Equal.

Please think carefully before you approach us just because one of us is brown and might not be “mine,” or because one or two of us seems quirky…unless you do so under an equal and inclusive flag.

Whatever we are representing to you, it’s probably not our "fault." It’s not even necessarily that interesting.

There's nothing wrong with us, or at least no more than there is with any other given family. And we all need to learn to get along. Best we do so with the basic assumptions that no one is a specimen and that we are all equally valid members of this funky human rainbow.

Thanks – I needed to get that off our Spectrum.

Love,
Full Spectrum Mama











Monday, May 4, 2015

MY GREATEST SPECTRUM PARENTING SECRET…REVEALED!

I am finally ready to share my greatest Full Spectrum parenting tool of all time: Rainbow Mac n Cheez!



                    








Figure I – Rainbow Mac n Cheez with a FULL SPECTRUM of Vegetables*













What's that you say? That it does not look like mac n cheez? To YOU perhaps...but in the Full Spectrum household Rainbow Mac n Cheez  has, in the fullness of time, become our go-to savory treat. Rainbow Mac n Cheez maximizes vegetable consumption while lending children a pleasurable frisson of eating junk.

The trick is, you’ve got to sneak it up on them. I started over ten years ago by mixing a little bit of store-bought spinach salad into a box of prepared gluten-free, casein-free, store-bought “mac n cheez” mix. By the time Z came along a few years later we had gradually worked up to a 1:1 ratio of vegetables to noodles. Also, we had ditched the gluten-free, vegan thing, although we did try that again later (and Rainbow Mac n Cheez is totally doable GFCF). 

By now the ratio, having increased over time, is more like three parts vegetables to one of pasta. I also toss in chunks of whatever cheese we have lying around once it's all in the pot, since there's plenty of hot stuff in there to melt it. Trust me: it’ll taste gooood!

My daughter has been known to scoff, “What IS that?” when she sees some plain elbow noodles with orange cheez sauce (I admit she will gladly eat it!). Then again, she’s offering, this evening, “Vegetarian chicken with banana yoghurt, peas and paprika.”














Figure II – “Vegetarian Chicken with Banana Yoghurt, Peas, and Paprika”










Happy eating!

Love,
Full Spectrum Mama


* Yes, this was eaten - in its entirety -  by the Full Spectrum children. 

Tuesday, April 28, 2015

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


Tuesday, April 21, 2015

BOOTY CRUMBS II

In Booty Crumbs I, which was mostly about how some of us notice certain things a LOT, there was a discussion in the comments about how hard it can be to get some kids with sensory processing differences to notice Crumbs (boogers, dribbles…), on their faces and elsewhere, under any circumstances.

Hygiene is a huge issue in the Full Spectrum household because G
1. Doesn’t notice schmutz, or
2. Acknowledge the necessity of basic, routine grooming,
3. Doesn’t care about either, and
4. Doesn’t have great executive function and so forgets even with multiple
    reminders.

Bottom line, G doesn’t give a rip – and getting him to do stuff like wash his face in the morning or clean giant glops of food off his fingers could be a full time job.

I worry about this for two reasons. First, I fear it threatens his hard-won social belonging. Second, it is part of the underlying sensory overwhelm that G experiences in many contexts – what the Asperger Experts call “defense mode.” G’s general awareness of how/what he feels – physically, emotionally -- can be undermined by an underlying overabundance of sensory and emotional information. 

Before I was aware of how certain experiences and environments affect me, I would feel anxious, desperate, dull, angry, numb – and I’d have no idea why I felt that way, and very few resources to quell these inner (for me – others may tend to lash out) storms…I now know this phenomena is known as a MELTDOWN. Things like unrelenting social interactions, feeling cold or, yes, Booty Crumbs, can trigger overload in me and lead to a wide range of negative feelings that are too big to process unless I am able to remember at that moment why I am having the feelings. I am learning to find environments that better support my neurology – and to take sensory breaks when that is not possible.  

Seeing the differences in G’s awareness and demeanor in different contexts has shown me that he is intensely affected by his environment. That sometimes means that he doesn’t have the attention or mental space for noticing stuff on his body, or doing things to keep his body “presentable.” Just as I’ve begun to address my own sensory and neurological needs, what it might take to create a context for my son in which he is willing and able to attend to his own hygiene routine and general bodily cleanliness without so much effort on my part?

Just the other night, I asked G if he had brushed his teeth.

He said he had.

I felt his toothbrush: bone dry!

Having spent several minutes brushing our teeth together morning and night for the last few years (since the dentist told me this was non-negotiable if G wanted to “have teeth”), and having each of those times painstakingly wrangled him into participating, letting G self-regulate on tooth brushing has been a big leap forward.

I was – maybe I was lacking perspective but – devastated…and mad: “Don’t you realize you could die???? If your teeth are rotten and you don’t take care of your mouth you will get diseases! And you will NOT be handsome!”

Full Spectrum Mama needed to go meditate. (Since G was a baby who needed a lot of support in going to sleep, I’ve tried to practice meditating nearby – usually in the hall outside our bedrooms -- after bedtime. Note: this does not always happen as planned!)  

G walked into the hallway where I sat, then into the bathroom to brush his teeth.

After a few moments, I saw this:




                                       Figure I – The Sideways, and Therefore “Invisible,” Sneaky Peek

He saw me seeing him:




                                                            Figure II – The Seething Meditator

…and went back to brushing his teeth.

How does tooth brushing relate to Booty Crumbs? Well, in both cases, is constant vigilance the answer? Already, with one kid with an attachment disorder, I have to watch the every move of one person in our home. With G, I’ve tried charts, lists, points…and am beginning to conclude that these are not the solution.

My own experience shows that -- for those of us with sensory processing differences -- self-awareness (emotional, social, physical…) may have more to do with finding ways to modulate one’s overall sensory and neurological situation than with the rote learning of ways to manage schmutz. I am in a place now where I am just very much hoping that somewhere in his own particular developmental process he/we will create the mental/physical space in which it becomes possible to note the intrinsic value of Booty Crumb removal.

For now, though, it’s back to brushing our teeth together.

Love,
Full Spectrum Mama







Wednesday, April 1, 2015

THANKS, MOM/THANKS, SON!

This was written for the “I Don’t Need a Cure Autism Flash Blog.” 

For those who “tweet,” please use these hashtags throughout the day on 4/2:
#idontneedacure, #WAAD

Here is a true story that illustrates how I am trying to raise my son to accept himself just as he is, and to make his own choices about how he might want to grow as a person. I was particularly moved to join the “I Don’t Need a Cure” gang because of having used these very words to my son (before hearing about the blog) just a few weeks ago:

My son G and I were hiking up a local, kid-friendly mountain with the rest of the Full Spectrums -- my Pardner and Z, my daughter. I noticed G’s extremely rosy red cheeks and I knew he was feeling drained.

I remembered having those same red cheeks. I remembered how, as a child, everything seemed harder for me – not just the social stuff (!), but physical stuff like biking or running. I would get very red and work very hard when other people just coasted along or put in a reasonable (non-grueling, -agonizing) effort...

I would try to tell grown-ups how hard I was trying, but they thought I was lazy or out of shape. I had what I now know was low muscle tone, and sensory processing differences that made it super-challenging for me to follow team play. I know it NOW because MY normal course of development resulted in higher, more “normal” muscle tone later in life, and I am now able to see very clearly that I truly was experiencing challenges on a different level than others. I think I am generally a “fit” person now, though team sports have remained out of my purview (perhaps that can be attributed to a complete lack of interest on my part).

I know many activities feel harder to my son than they do to most. While my nine-year old daughter virtually runs up the mountain without breaking a sweat, my 13 year-old son is as red as a beet, even though his general levels of fitness and activity are basically the same.

Perhaps the hardest thing for me as a child was feeling misunderstood. I’ve always accepted difference, even (mostly) in myself, but I’ve never been able to learn to countenance injustice. So I wanted to validate G’s experience, and help him feel understood, in part by sharing with him how he is “sometimes a lot like me as a kid.”

I told him that “Everything was harder for me, when I used to go on family bike rides or runs, or when – this was the worst! – my family would make me join in soccer games.”

I remembered how agonizing those times were – how exhausted I would be, how misunderstood and alien I would feel because I didn’t enjoy the “enjoyable” activities my family shared, and because I felt like they judged me for how I felt, both physically and emotionally…

“I would get super red cheeks, just like you do! I was kinda soft, and floppier and ganglier than I am now. I got stronger and stronger as I grew up. I think you will too.

“Growing up is a process, and everybody does it in their own way. I suspect that for you, like for me, it’ll take a little bit longer for some parts of your brain and body to get in their best shape.”

I explained that my red cheeks and difficulty keeping up came from low muscle tone, a physical difference sometimes associated with neurological differences that made all my muscles have to work harder. I added that it was tough for me growing up neurodivergent in a way that I don’t think it is for him because the people around him and understand and completely, unconditionally accept him.

I thought about how watching my child encounter similar experiences in a very different context has been healing for me, and how grateful I am to be able to show him some aspects of life as a happy, healthy, self-accepting (all relative terms of course!) neurodiverse adult.

We walked a little further in silence.

“Thanks for giving me asperger’s and low tone, mom,” he said, sounding sarcastic and resigned.

I took a deep breath. “Buddy…don’t you like me? Because I like myself. And I like you too – a lot! It’s not that I want you to be just like me, you are absolutely your own person. But the things that make me a little bit different make me who I am and it’s the same for you. You’ll grow up at your own pace.”

“Of course I like you, Mom,” he replied. “But I want to be strong.”

“If that’s what YOU want, you’ll have to work hard to be strong, maybe harder than other people. But you’ll get there,” I assured him. “I promise. You can do anything you set your mind to!

“And once you do get strong, you will never forget how it felt to try that hard and succeed. You’ll always feel compassion for people who are having a hard time and accept and understand people who are different. Those are really good things!

“I like us both just the way we are. We can grow, when we want to. We don’t need to be cured.”

Love,
Full Spectrum Mama



Wednesday, March 25, 2015

FIRST STEPS: UNDERSTANDING AUTISM

I edited this book, and I'm proud, but I already got paid -- so I'm just purely wanting to share a fantastic introductory book for those of you who'd like to learn some basics around autism - or who have people you'd like to enlighten:
 First Steps: Understanding Autism
You can purchase this book HERE

The author is a neurodiverse person with neurodiverse children, and her perspective is inclusive and wise. She's also written a memoir, which I've just begun to read and am enjoying immensely; I am especially relating to what it feels like to grow up "different" and raise kids who are "different," too. As she notes, so much work on autism comes from allistic people, and there's much to be said for work on neurodiversity from neurodiverse perspectives! 
  
Love,
Full Spectrum Mama

Thursday, March 19, 2015

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 32nd 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