KOANS FOR PARENTING TEENS I-IV

Dear Persons,

The Oxford English Dictionary defines a KOAN as “a paradoxical anecdote or riddle, used in Zen Buddhism to demonstrate the inadequacy of logical reasoning and to provoke enlightenment.” 

When I am faced with questions I can’t answer, I often reframe them as koans, in order to — yeah, basically — make myself feel better.  Also, laugh. (Also, cry.) 

Teenagers provide ample opportunities for koan construction, let me tell you — never mind parenting teens with differences…

Here are some recent koans I’ve developed: 

I.
If your neurodiverse teen stays out late for the first time and then sleeps past their usual 5:30 am. wakeup…is that Self-Regulation?

II.
If micro side-eye is smaller and quicker than regular side-eye, can it still be worse?

III.
If a peer invites your developmentally different child to do drugs or vape…is that Good? Or Bad?

IV.
Why is being weird weird, but being mean isn’t weird? 

Love,
Full Spectrum Mama

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Mommy 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!

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GAMING FOR PARENTS

Dear Persons,

Let's play a game, and in that game the rule is, everything I say is annoying and wrong. 

This game is called…The Teenager Game. 

Here’s a brief round from just the other morning:

FSAM* [cheerful and encouraging]: G,  if you have to stay the whole period for your test but are done,  why not use that time as a chance to bring up your grades? You know, work longer on the test after giving your brain a little break. Or ask your teacher what other work you can do! 

G [ultra-sullen/condescending]:…Do you have to talk to me? 

FSAM [caring, thoughtful, respectful]: Z, The writing program ends in April, right? How is your writing going?  

Z [side eye]: We will send it in in April. 

FSAM [confused and/or correct]: Well…doesn’t that mean it’s over?

Z: [shrug].

The Teenager Game is pretty exhausting. Like any parent with teens, I often wonder how to get through to them. Almost everything I say to them is, quite typically, met with disgust and dismissal. 

By the way, how did they get this “grownup,” anyway? 

When I was pregnant and had begun the long process of worry that is a big part of parenthood, an experienced mother of three grown boys told me something that really helped me through my first few years as a parent: “The odds are with them.” 

It was such a simple phrase, but it truly carried me through some rough moments. One kid would get croup and I’d be up at 3am holding him or her, listening to what sounded like a death rattle in a steamy bathroom and I’d be scared out of my wits. Then  I’d think, “Jill told me the odds are with them! How many babies have croup right now? Lots! S/he’s gonna live!” With each wee bit of independence or separation, too, I would start to spiral. Then I would remember: “The odds are with them!” It was such a comfort. 

But there’s a catch now. The things is, with autistic kids — my son, G, is on the spectrum — the odds aren't with them. Without getting into the precise (very daunting) statistics, people on the spectrum are significantly less likely to achieve all sorts of things that typical people mostly take for granted, like independence, employment, academic accomplishments, romantic relationships, parenthood, health. And kids with behavioral and emotional issues, like those my daughter has struggled with due to her attachment disorder, do so much better in the long term when those issues are addressed in their younger years. 

So in this “game” of teenage disaffection, the stakes feel higher in the Full Spectrum household, as they would in any household with differences and disabilities. I have to get through to my teens, since the things most people take for granted will eventually happen for their kids - independence, mental health - are not a given. I have to tread a fine line between accepting that my children are beastly teens, while remaining alert for any signs of impending disastrophes. At the same time, I have to not have a nervous breakdown?! 

So how do we improve the odds? Ideally, while not having nervous breakdowns, not breaking the kids, without the kids breaking themselves, and while presuming competence for all, we will also be able to encourage them and help them flourish as the unique, irreplaceable, precious beings they are. 

And this isn't a zero-sum game. The more our loved ones with differences are uplifted, the more they succeed, the more progress, acceptance, and awareness for all, right? After all, that’s the whole point of this here blog. 

Stay tuned/bear with me as I approach this transition phase, along with my Meeting Friend, and a few other loving yet terrified parents of teens. I will share input from parents and guardians and individuals who have been there as well. 

Love,

Full Spectrum Mama

* Full Spectrum ANNOYING Mama

P.S. FSM has received some good press and stuff lately, and readership continues to climb (at 175,000+ as I write!). I was interviewed, about, among other things, activism, advocacy, and parenting a neurodiverse child as a neurodiverse parent here, at this great site that recommends asking real live autistic people about how they feel and what they want in their lives. Also, I am so honored and excited to have been named a "Top Autism Blog for 2018" - Oooh, I just have to share: "Full Spectrum Mama writes in a refreshingly honest style with beautiful rainbow illustrations that accompany her posts. It’s one of the most unique autism blogs on our list."

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

DIFFERENT DIFFERENCES, DIFFERENTLY DIFFERING

Dear Persons,

Are you and/or your child(ren)…”different”???

As a child I didn’t see difference as significant. I think I noticed that people had different skin colors, genders, ages, spoke different languages, etc., but none of these distinctions held weight for me.  This was partly because I grew up in diverse environments (Panama and the Bronx, then Westport, CT), and partly because my brain has always been a tidge you-know-what.

I’ve been thinking lately about how the ways we and/or our families and/or loved ones differ from the “norm” actually change and have different repercussions and benefits over time and in different contexts. 

Those lists where people suggest “Things not to say to the parent of a Special Needs child” are a good example, because those things change. They change from parent/person/child to parent/person/child. And they change as children grow up and as people grow.

When my son G, who is on the autism spectrum, was little, “what not to say” would have been, well, just about anything since I personally - unlike, um, every teacher he ever had -  thought nothing was “different” about G; in elementary school, our biggest challenge was getting G the support he needed (and, at times, avoiding support he didn’t need). 

Now, I dread people telling me “So, G will be getting his Learner’s Permit soon.” Um, no? And could you not bring that up with him, please? I watch my friends with kids G’s age rejoice in their increasing freedom, knowing their children’s paths will differ in significant ways from my G’s, and I have mixed feelings: glad to have my dear child around longer, isolated, sad about that lost freedom, worried about his future, super proud of him just as he is…

(Please note, statements like, “Oh, every kid does that!” or “Every parent worries about their child’s future” - meant, probably, to be reassuring - are usually on the “not to say” list. It’s not the same. We know our kids, we know what their challenges are, we know the Full situation, so…) 

With my daughter Z, who has struggled with an attachment disorder, what has gotten me all along is when people judge my parenting (they tend not to judge HER because she is so. dang. charming). Therapeutic parenting for attachment disorders is super strong on boundaries in a way that is anathema to most of my crunchy, progressive community. For most of Z’s life, I’ve suffered when I’ve felt that people were blaming me for my daughter’s rages and tantrums. Now, I cringe when people indulge her when she is in fact testing and manipulating them.  I cringe when I have to intervene in ways that seem too strict to people who have not wrestled with attachment disordered behavior in their families…

And she - smart, tough cookie - totally knows both how to work it and why I act as I do. After she’s done being mad, she appreciates my efforts. But I know there are plenty of parents who think I’m a so-and-so. Now? I don’t care so much. Before? Yeah, that was hard. So that’s a change…

More changes: My son’s learning differences seemed to impact him most early on. They are still a major factor, as he is still in school (and they will remain something of a challenge his while life since his learning differences have non-academic implications as well), but as he moves out into the wider world his social and developmental differences may become more significant. My daughter no longer explodes in public, but she’s still contending with a need to control her environment that sometimes causes less-than-healthy behavior. As she grows up, I can see ways in which this may even become a strength, though I worry about anyone who tries to oppose her!

I guess what’s now really sinking in is that I thought once I knew there was something different about myself/G/Z, we would get a label and figure everything out and that would be it. No. And also? Labels change: Since G’s diagnosis with Asperger’s about seven years ago, Asperger’s has been officially folded into the Autism Spectrum Disorders (I say “Differences”!!) diagnosis. 

Even our understanding of labels changes as we see how individual ways of being, thinking, acting manifest over the days, weeks, months, years; as certain labels and conditions are added into the mix, and/or others are removed; as one issue that felt all-encompassing is replaced by another - or by a period of relative stability and ease…Over a lifetime, difference plays out differently. We learn and make mistakes as we go along. 

Sometimes we underestimate or limit people based on prior abilities, and it’s important to remember that we all - no matter our labels/diagnoses/challenges/disabilities/abilities - have the capacity to grow.

I wouldn’t trade either of my kids for any other, less-different child for all the world. Like most other parents, I happen to think they are the two bestest kids on this planet. At the same time,  they are not special snowflakes to be sheltered and protected from everything, especially now that their differences differ differently because they are growing up. We’ve learned that these differences make some things harder and some things easier for them, and, together, we are finding ways of both celebrating and scaffolding our differences in ways that allow for growth and change. 

Love,

Full Spectrum Mama

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!

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FULL FRONTAL - A NEURO-MOMENT

“You need to be your teens’ ‘frontal lobes’ until their brains are fully wired.”

Dear Persons,

  

I found this quote, from The Teenage Brain by Frances Jensen, in an 8/31/15 New Yorker article, “The Terrible Teens: What’s wrong with them?” by the highly-respected Elizabeth Kolbert (all following quotes are from this article unless otherwise specified). Kolbert usually writes searing, devastating pieces on global warming and the environment, but apparently she’s also the mother of three teenage sons, and so had a personal interest in this subject as well. Frances Jensen is herself “a mother, an author, and a neurologist,” who has two sons who have now graduated from their respective (very good) colleges. We will leave aside the question of how these two mothers are so incredibly accomplished, naturally doing so in a totally unbitter way, and now proceed to discuss how and why something is “wrong” with teenage brains.

...Something is wrong with teenage brains. And what that is, is: teens are not yet fully-brained.

This is news?

Even Aristotle (~384-322 BCE) felt that the young are lacking wisdom or even the capacity for reason. In his Nichomachean Ethics, he wrote that youth are so “inexperienced,” and “tend[ing] to follow his [sic] passions” that “studying [here, reason and philosophy] will be vain and unprofitable.”

But Kolbert, Jensen, et al bring the science: Apparently, everything we think of as mature, wise, balanced, reasonable, “civilized, intelligent,” comes from our frontal and prefrontal lobes. Since brain development has been determined to start in the rear sections of the brain and move forward, these areas are the very last to mature. In fact, according to MIT.edu and many other sources, full brain maturity may not occur until far into the 20s, usually around 25 years of age. The BBC News, among others, extends this into the early 30s.

In teens, the frontal and prefrontal lobes of the brain are not yet completely integrated or connected with other more impulsive or pleasure-oriented parts of brain, the latter of which are in fullest-ever force during these years. Usually, in full-brainers such as ourselves, the frontal and prefrontal lobes will “check on impulses originating in other parts of the brain.” For teens, who are still developing those links, checks and balances are rare to nonexistent. Since these front bits of the brain are also the seat of executive function – “responsible for planning, for self-awareness, and for judgment”—organization and follow-through are also at a low point.

Now imagine all of this plus atypical neurological development. In certain ways, aspects of autism and other neurodiverse ways of being such as ADHD, may resemble - or partially overlap with - or exacerbate! - the typical teenage brain.

What I really, really want to know is: Does this mean my son may actually someday develop some sense? I do and will celebrate all of his other quirkinesses and differences, but the sheer dangerousness of his unique developmental status in this area, combined with the natural teen/20s[/30s] propensity toward rash, foolish, irresponsible behavior, is alarming. At some point, he needs - for his own safety and independence - to somehow make, integrate, and strengthen those neural connections.

In any case, allistic or neurodiverse, teens also quite blatantly lack some of the central capacities we regard as integral to prudent, productive, safe human existence.

As solutions, Jensen and Kolbert recommend the following hi-tech tools:

            * “near constant hectoring,”

            * “scare tactics:” telling terrible cautionary tales at every opportunity, and

* calling other parents to make sure your teens are never alone at their houses, either (representative teen quote following this strategy: “Why even have kids if you are going to do that?”),

...in order to:

* force our kids into faking or parroting some modicum of executive function, responsibility, and do-right,

* supervise teens’ every move, since they are personally incapable of judgment, and, most importantly, to,

* frighten our kids into not doing all the stupid things they are naturally prone to doing.

Count me in: I never thought I would be this kind of parent but, given what I’ve learned and experienced so far, I agree with them on every level. They admit, however – and I agree with this, too - that not only were/are their teens’ immediate responses “not always encouraging,” but that there is “no empirical evidence” that any of this works.

Nonetheless, it’s all we’ve got. So, for the next 8-20 years, you may call me “Full Frontal Mama.”

Love,

Full Spectrum Mama

CONFERENCE II: FOURS AND TWOS

Whereas Z’s report card consisted almost entirely of threes (“meets grade level expectations”), G’s report card was pretty evenly split between twos (“making progress toward meeting grade level expectations”) and fours (“exceeds grade level expectations”).

Always with the Full Spectrum, eh?

But this was a familiar report card: G is excelling in certain areas, and struggling in others.  Although my report cards tended more toward fours because of my strengths in executive function, I knew G was doing his best and I celebrated the quantified results of that effort.

G’s conference wasn’t spent talking about ways to get him to work harder. His teacher and I both know he is working his fanny off. Even for those twos, he is working. His conference was spent on other concerns. Conferring about how he’s mostly with adults on the playground – and how he says, “Thank you for hanging out with me” to them. How he sits with his teachers on the bus – and thanks them for letting him sit next to them. How, during winter sports, he, again, stayed back with the grownups and told them, always, “Thank you for playing with me.” [I’m thinking, please, no, I DO NOT WANT TO HEAR THIS YOU ARE KILLING ME! I thought he was playing with other kids! He said he was!]  That combination of pathetic and clueless and kind and grateful and well-mannered is also very familiar.….

What do you say to your child about this sort of news? “G, you need to be less thankful and also not go near adults?” Clearly, he’s making these choices for reasons that make sense to him. For one thing, according to his teacher the preteen girl posse he’d been rolling with since the start of school was still somewhat friendly and protective, but now they were more teens than pre- -- with the attendant changes and concerns that come with that shift. For another thing: sixth grade/sixth graders. Blech – who can understand it/them?

Then his teacher explained how he has a hard time working with groups: first, he gets very upset if people don’t do exactly what they are assigned to do in the group or what they say they are going to do; second, others try to do his work for him to “help” him because of his slow processing, which is insulting. Group work is big these days – so it’s a big issue for kids for whom it’s not a natural fit.

Feeling a wave of despair at this point, I wondered if this was all just too much for G, and if he would be better off in a different setting, perhaps a specialized classroom. His teacher replied – quite vehemently – that he would not. She admitted that he does struggle in the mainstream classroom setting, but that she is certain that it’s the best environment for him, just as I have always believed.

There’s a child in G’s class who is more obviously “autistic” than G. This child receives a lot of attention and is doted on by many of the girls in the class. I’ve already had to explain to G that the reason all the girls “like” this other boy is because they want to help him and take care of him. I asked him if he wants people to “feel sorry for him” in that way and he replied with a very strong “No!” In his teacher’s words, G “is not quite different enough to be a mascot and don’t want him to be!” Yet he’s still “different” in ways that set him apart, for example: “He still hugs me – sixth graders do NOT hug teachers!” Well, his teacher is pretty durn wonderful…

Again, what does one say in this situation, as a parent? “No hugging!”????

G is trying to integrate sixth grade social rules…at his own pace! For one thing, as I mentioned at the end of the conference, he studiously and elaborately avoids me at All School Sings. Except – one time, when we were singing “You are my Sunshine,” he looked over at me (because he knows he is my sunshine) and I was **sobbing** and that was the end of even looking at Mom during such events.  

And rightly so! I am so embarrassing. No, I am. Thank you, dear reader, for reading this, for playing with me, for sitting with us on the Full Spectrum bus.

Love,

Full Spectrum Mama

BEING 12

 I was talking with a very close friend about a crisis* G had in school last week and, after I’d been blabbing for some time, she said, “Well, you’re so focused on his autism what with the blog and everything, and, you know, all kids have struggles…”

Oh dear…Is that what people think, that for us it’s all blog and/or autism? To clarify, I have three jobs now. So it’s a privilege to think about this darling blog for even a fraction of a moment. Second, this conversation had nothing to do with the blog [until now, anyway] or G’s having asperger’s. Did I mention autism during my diarrhea of the mouth**? No. This – all this I had been sharing with her about what happened at school, which incident was very painful -- was

about

being

12.

This was, maybe, partly, also, being a child of a tough divorce. But autism? Not so much. The main crisis-inducer here was, again: being 12.  Luckily, we are good enough friends that we were able to clarify our respective perspectives well and move on, but it sure got me thinking…

Is 12 the hardest age? My vote is yes.  You are still so young, but bravely trying to be “grown-up.” You are sullen, self-loathing, monosyllabic; while also still wanting and needing to be taken care of and adored. You are still extremely cute and squeezable, yet you are, at times, a jerk. Other times, you are sweet as sunshine. Then: jerk! Sunshine. Sunshine. Jerk.

It’s SO moody at 12.

Your peers are starting to have serious interest in whoever they might be interested in romantically; and, although you might not be quite there yet, you feel it stirring. And it’s confusing.  Watching G sometimes, one can almost see the new feelings and hormones moving inside him, moving him, like the sap running in trees this time of year.

At 12, most kids won’t admit to still liking to play…and yet they do still like to play, in private or at home with younger siblings.

Sure, maybe for G, he’s a bit developmentally behind his peers, but being 12 is something that happens to most people at some point, whether they are 11 or 13 or…

Being 12 is, for G, about knowing soon you will have to put away your stuffies.

Figure I – G has a LOT of stuffies. His treasured seals [one is a manatee, oops!] are in front.***

Being 12, for G, also means still being enough of a little one to offer your best stuffies to your mom when she is sick.

      Figure II – Healing Stuffies, Blanco and Blancli, on Mama’s Pillow****

Being both of these is tender, and raw, and HUGE.

Sometimes things in the Full Spectrum household are pretty near idyllic, and sometimes they are decidedly not. Sometimes that non-idyllic situation has to do with autism or an attachment disorder or something else entirely…Sometimes, for pure awfulness as well as the occasional marvel, being 12 is enough.

Love,

Full Spectrum Mama

* Yes, I do use this word advisedly.

** I know I promised less diarrhea-focused writing; this is diarrhea of the mouth.

*** Please, those of you for whom this blog is not anonymous, DO NOT SHOW THESE PHOTOS TO YOUR 12 YEAR OLDS!

**** None of these stuffies will be gotten rid of. It’s possible they will “belong” to G’s younger sister in future, or move to FSM’s bed (shh, pardner doesn’t know about this), or be given to deserving, saintly little ones in great need.

High Five!

I was driving with G and a sleeping Z the other day and the Violent Femmes’ “Blister in the Sun” came on and I told G, “You have to know this song. It’s one of the songs of our people.” The internal litany of my fears for his teenage-period drenched my brain instantaneously. As I sometimes do -- since my stated position vis-à-vis worrying is Against -- I proactively reviewed my mental checklist of the tribes that might protectively accompany G through his teen years: Dungeons and Dragons and other gaming groups, dorky smart kids, lonely Goths, Drama Club, the Society for Creative Anachronism folks (sensing some overlap here?)…Then I started to actually listen to the long-familiar lyrics of the song I had instructed him to follow (http://www.lyricsfreak.com/v/violent+femmes/blister+in+the+sun_20144625.html).

Wha-a-at?

“Never mind the song, buddy,” I said, hitting the scan button pronto. Anyway, who am I to decide which people my son will affiliate with? Maybe I am erroneously offering him the signifiers for particular alternative tribes while he is or will be drawn to a completely different subgroup. Still, I hope he will be able to discern and master those actions and items that we use to recognize others “like us” – whatever and whoever they may be.

For now, he’s really digging on “The Black Sabbaths.” One of his signature communiqués involves growling, especially if he thinks anyone is teasing him. Another is his jig of joy, hands and feet flapping, a big goofy grin on his face. Sometimes, during the latter, he trips himself.

I’m not sure I ever quite got the signals just right…but I still have some friends. One time my dear friend Bob  (bobparkswriter.com) was out on a run and passed by my house and I happened to be outside. We had a nice long conversation about aspergers syndrome and how both of us identify as neurologically different and aspergian although we remain undiagnosed. Then, when he was about to leave, we tried to high five…and missed.

Z will have her choice of tribe. She will wear a glitter sock with a thrifted ‘70s hiking boot (real-life example) and the cool kids will think it is cool and the anti-cool kids will think it is anti-cool. My urge with her is more to de-commercialize/de-massify, to offer choices that allow her to go inside and see who she is -- not in-relation but in Herself. 

As things stand, she prefers to be surrounded by acolytes at all times.  The phrase, “I need space” feels useful to many of us because it has a certain neutrality. It sounds better than, say, “I don’t want to play with you,” or “I don’t like you.”

Not to Z.

Recently, my resilient girl was uncharacteristically devastated by two different friends using this phrase with her to, well, get some space.  When, after the second incident, we had a talk about “needing space,” she shared that being told someone “needs space” felt very hurtful, but she also said it was “hard to understand.” Because of the latter, she found the request difficult to honor and exacerbated both situations.

Not knowing what else to do -- and aware I was not being entirely truthful -- I told her, “Mama will never need space from you;” I grabbed her and made her walk around clutched (by me) to my leg for an afternoon, much to her delight.

These “need space” incidents notwithstanding, Z will undoubtedly be able to attract an endless stream of people to her side and she will understand and manipulate their diverse cultural signals and signifiers with ease.  My hope is that she will feel fully worthwhile when alone. I hope she will learn to take “I need space” – in whatever form it is expressed – as, if not a totally positive thing, something that she can at least comprehend...and respect.

Another beloved friend – always a teacher, and variously a dean, headmaster, and minister -- once asked me if I thought that perhaps G and Z in some sense constitute and intensify one another’s differences. He wrote, “I wonder if Z's most challenging explorations to the left sometimes encourage G to the right, sort of like a couple that can afford for either [one] to have a tantrum or ‘break down’ but not both simultaneously.” At times, it does seem to happen in this way; other times, the opposite seems true and they seem to symbiotically draw one another closer.

Despite their seeming to occupy very different spots on a Full Spectrum I have to allow room for these two children to grow in their own unique ways, perhaps even to grow closer to “normal,” and therefore also more similar to each other.

I have to let my children be themselves. But one of them – guess which -- will probably miss high fives a lot of the time.

Most adults, at least, know the proper response to such goofiness: So what?

High five!

Love,

Full Spectrum Mama