Friday, January 29, 2016

TEAM FRIENDLY FACE AT HIGH SCHOOL ORIENTATION


Team Friendly Face (links: http://fullspectrummama.blogspot.com/2014/05/team-friendly-face.html and http://fullspectrummama.blogspot.com/2014/06/team-friendly-face-update.html), convened at the beginning of Middle School, was represented the other night by a few friendly faces as I walked apprehensively into the orientation for parents of incoming ninth graders.

The auditorium was significantly less full than I would have expected, given the size of the incoming class of first year high school students. To this casual observer, it emerged that there were basically two types of parents who chose to attend this event. Both sets looked keyed-up, nervous. But one set looked excited, too, whereas the others, my Friendly Face peeps, looked TERRIFIED. We know how hard transitions can be for our kids, both for individual reasons, such as anxiety around new things, executive function challenges, and so on, and for larger-scale reasons, such as the inevitable jostling and alienation that come with new social situations and groups. (Guess who’s usually targeted in high stress situations? People who are different? Yup.)

The future  AP parents, the ones who indeed legitimately signed the Honors English agreement that was in the million-page high school transition packet – the Honors English permission form that I’d signed because, why not? Hey, my kid is GIFTED, and...um...honorable – kept asking questions about things like “prerequisites for calculus.” The rest of us cringed, kept quiet. Sure, the school administration and teachers seemed welcoming and nice, but we all knew our kids might need a slightly different – probably more extensive - set of guidelines.

After the presentation, I felt shellshocked. Team Friendly Face member J came over to me, crying. I felt a migraine descending. We tried to prop each other up. Team Friendly Face members K and C reminded themselves and us that our future ninth graders have such a gift for finding the good in every situation. That our fears don’t always manifest – and often go blissfully unshared by our children...

Then my shy, sometimes uncertain, Team Friendly Face friend J walked up to the Special Education representative and, before my eyes, turned into an articulate, assertive Warrior. While I stood mutely by, gazing through narrowed eyes, trying not to sway or vomit (migraines are fun like that), she introduced herself (and me), asked some really smart, important questions, and just basically advocated her butt off for her son. I was so proud of her! And a bit ashamed that I’d just written a whole post on advocacy...But then sometimes we need to lean on others when it gets too much. I was super grateful for those Friendly Faces at this event! I know I will be getting plenty of chances to advocate in the next few months and, thanks to J, some of my questions have already been answered.
   
It was also a comfort to know I could jot down some reflections on this ordeal in my 300-page and growing Full Spectrum Mama draft file. I publish only a fraction of my writing, but somehow the luxury of writing things down, along with the opportunity to process this writing provides, and then – when appropriate, when I have the time to polish the writing, etc. -  I am grateful to be able to have a part in the wonderful blogosphere phenomenon of letting others know they are not alone.

That being said, I’ve always seen THE COMPLAINT DEPARTMENT as a place where ANYONE can share their experiences. I will be publishing a plethora of COMPLAINTS in the upcoming yearly post. Please email me your tisk-tisks, your triumphs, trials, tribulations, tales of woe and so forth at jineffable@gmail.com. 

Love,
Full Spectrum Mama






Thursday, January 21, 2016

FOURTH ANNIVERSARY LISTS I: ADVOCACY


Every year, this time of year, I get to indulge in a series of posts that use my most beloved mode of thinking and organizing: LISTS.  The first in the series has always been on ADVOCACY, a subject central to most everything I believe, ponder, and do, as a mother and as a writer.

I’ll be heading into both three-year IEP evaluation meetings and high school transition meetings in a few weeks. Considering the week I have just had, where I
1. noticed on page 27 of a 40 page IEP informational packet that G’s services were being cut from 24 hours per week to 11 for this fall when he starts high school;
2. noticed that G was once again failing several classes and had to engage intensively with him and his teachers and paraprofessionals and case manager* to get him back on track, mostly around executive function matters; and
3. travelled 45 minutes to an away basketball game to watch G play, having attempted a four-tiered system to help him remember his gear (for the record: written list, email, lecture at breakfast, and quiz in car) only to find that he’d forgotten his shorts.**
            ...this was a great time for me to review my advocacy lists and get prepared for what’s to come! As my Meeting Friend can attest, this sort of schedule of minor disastrophes is all too typical for we atypicals, so any time can be a good time to sharpen our advocacy skills.

Here are my previous anniversary posts on advocacy, chock full of tips for success (and some choice “don’ts”) in delightful list form:

Links:

You can also use the “search” function at right to find more posts pertaining to this important subject.

Since I’ve been blogging awhile now, I’ve more and more had the privilege of being asked for advice and support from near and far around advocacy. It’s probably the thing I get the most queries and referrals about, and I am pretty sure that’s because we all get intimidated as well as confused by powerful, sometimes-inflexible, institutional systems that are larger and more complex than us, and full of people who have their own agendas, not to mention the need to become well-versed, quickly, in completely new subjects...All the while dealing as individuals and/or parents with navigating a world that is not always welcoming of difference.

I’ve come up with this handy-dandy three point list to summarize the key aspects of advocacy as I see them, after almost a decade of advocacy:
1. INSIST!
2. PERSIST!
3. EXIST!

...And now for a little elaboration:

1. By INSIST, I mean, to go with what you know is right, whether anti-bullying or pro-services and –adaptations(–accommodations), whether at school, at work, in the larger world...Oftentimes you might not even know what the law or rule or adaptation/accommodation or service or policy is...but you know in your heart that you or your child deserves better. Is your or your child’s neurology, sensory profile, or other difference significantly impacting or impacted by your/their school (or work, or...) experience? Then something needs to change. Part of this step is finding out what can be done – finding a way to make things better – and then INSISTING upon it.

2. By PERSIST, I mean: don’t give up.  Sometimes our efforts at advocacy are flat-out exhausting. Sometimes they don’t help us or our children but they help others down the road (laws, do I have examples of this). If possible, keep trying: sometimes it might just take one more call, or google search, or email to another parent or a friend to push things over the line to full or partial success. Yes, there are a lot of things working against progress (on both smaller and larger scales), but there are good guys out there, and rules and laws that are meant to support equality and fairness...we as individuals can make a difference in the creation of and changing of attitudes and laws, too, but it takes time. PERSIST, dear reader, and find these people and these policies (or be/create them!) and let’s level the playing field!

3. By EXIST, I mean: you are a person! Yes, you! Take care of yourself. I don’t do this. None of us do. But we should. Especially when the world needs MORE from us, and we feel we’ve Nothing left. Sleep. Good, nourishing food. Taking a break sometimes and just reading or going for a walk...Am I ringing a bell here?


Life can sometimes feel like a roller coaster, all the more so when you and/or your child has/have atypical learning styles and/or neurology and/or abilities. When I contacted G’s case manager* to review his grades from the depths of a reasonable yet debilitating funk, she responded on that subject and then, later, sent me this:
I forgot to write it in my last email but...I have been meaning to let you know how amazing [G] was during his Socratic Circle in English class with [teacher]. He related the poem 'Kindness' to his negative experiences in [pre-move, reason-we-moved, elementary] school with bullying and was able to speak to how it made him understand kindness more. He also said that because of this experience he has become a more compassionate person. I was so impressed and moved by his thoughtful input. He was serious and thoughtful. It was just wonderful!
...This email kind of made up for the other disastrophes that week, my point being: take joy/comfort/light where you can...you may need it! Seeking out and really listening to those who recognize/acknowledge/celebrate your or you loved ones’ real gifts are a part of self-care and feeding of the soul.

You know – roller coaster alert - I had mixed feelings when this (very kind and hard-working) case manager* subsequently told me that “[G] could be in an advanced language arts class if not for his issues with organization and writing.” I mean...what’s not happening for him at school that you are not helping him enough with these very issues (learning differences [a.k.a. disabilities – the language we choose is part of advocacy!]) to realize his potential??? Wait...It’s time to advocate...Ciao!

Next Anniversary List: FOURTH ANNIVERSARY LISTS II: ATTACHMENT DISORDERS.

Love,
Full Spectrum Mama


* Ok, “Case manager” makes my son sound like a “case.” Yuck. Note to self: another advocacy goal for when things slow down....??
**The fact that G is on the basketball team is a subject for at least seven or eight future posts, which I will likewise write when the proverbial things slow down...


Tuesday, January 12, 2016

BOUNDARIES


“F*cked up people will try to tell you otherwise, but boundaries have nothing to do with whether you love someone or not. They are not judgments, punishments, or betrayals. They are a purely peaceable thing: the basic principles you identify for yourself that define the behaviors that you will tolerate from others, as well as the responses you will have to those behaviors. Boundaries teach people how to treat you and they teach you how to respect yourself.”


Dear Persons,

Boundaries keep us healthy.

Boundaries can be any shape (including partially open), thick, thin, obvious, subtle, situational, universal, expressed, internal, pleasing and convenient for others– or not, ordinary, extraordinary, permanent, flexible, temporary,...Boundaries can and should be of any type that promotes our health and healthy relationships. Boundaries consider and encompass ourselves and others as PERSONS.


Figure I – Visual Rendering of a Full Spectrum of Boundaries

A lack of boundaries finds an interesting overlap between neurodiverse people, who, for a variety of reasons, may be unaware of the possibility/necessity of certain boundaries, and unhealthy-to-toxic families, where vulnerable members (such as children, or, sometimes [and by no means only], women) may be abused or exploited partially because of weak or nonexistent boundaries in the family dynamic.

People who desire full health can learn about healthy boundaries and enact them. This can be challenging, especially at first, because new routines and behaviors always are (hello, transitions!), but also because sometimes others may take boundaries as a personal offense, or as selfish, or a burden.

Refer those chumps to the above quote. .

Basic well-being in life also embodies healthy boundaries (eating habits, personal safety, fitness...). For people who are highly sensitive, people with sensory processing differences, and people on the autism spectrum, among others, healthy boundaries may further include a diverse range of choices, such as:

* Not shopping at big box stores (this may hold, too, for people who have boundaries around consumption, or around economic ethics regarding working conditions of employees and/or manufacturers);
* Limiting the number of steps in any set of instructions, whether at school, work, or home;
* Allowing fidgets, pressure devices, what-have-you to be integrated in the classroom or workplace;
* Limiting or specifying social interaction;
* Avoiding fluorescent lighting, certain smells, loud noise, crowds....
* Finding mutually satisfying means of communication;
* Choosing clothing, food, etc. that does not hurt, distress, or irritate us;
* Deciding the conditions under which we will choose to share our unique circumstances and needs...


We have the inherent right to deduce and determine what feels safe, healthy, and appropriate in our lives. We can and should ask those who value our mutual health and relationships or who are charged with our wellness, working conditions, and/or education (and/or the education and/or care of our children!), to honor those boundaries.

Incidentally, healthy boundaries also allow us to more abundantly exude and take in all the good stuff.

















Figure II – 
Person with Healthy Boundaries Enjoying The Good Stuff





















I never knew all this; that’s why I am sharing.

Love,
Full Spectrum Mama

[EDIT, 1/13: My dear online friend Kmarie  Audrey posted this deeply thoughtful and interesting post after reading the above: 
http://worldwecreate.blogspot.com/2016/01/boundaries-christianity-grace-and.html]



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!


Thursday, December 31, 2015

WINTER LIGHT: ALL IS CALM, ALL IS BRIGHT


As the days lengthen, though many of us are in the deepest part of winter, may we all seek to spread a Full Spectrum of acceptance.

May we celebrate and embrace our differences, advocate for ourselves and others, and live our lives as superheroes - vanquishing intolerance, ignorance, oppression...any force or person or group who tries to keep their fellow beings down or hinders their shine!

May we glow with engaged, empathetic love.

May we wisely understand that in light, ALL colors are contained – just as all shapes, sizes, abilities, neurologies, sexualities, ethnicities...make up the whole of our world.  

Oh, and may we each and every one be blessed with a heaping dose of perspective.

Wishing you warmth and health in the New Year, with much love,
Full Spectrum Mama

Monday, December 21, 2015

FULL FRONTAL - A NEURO-MOMENT

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

  
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



Tuesday, December 8, 2015

IS IT TOUCHING?


I just finished reading Little Women to G and Z. That book is way longer than I remembered - and – seriously?! - emotionally grueling. As had happened throughout Little Women, but on an even more snot-filled, ugly-crying level, I began to lose it as I tried to read those last pages aloud. The closing bit, where Marmee says, even after all the poverty and hardship, and even though her daughter Beth died (sorry if I am giving anything away here), “Oh, my girls, however long you may live, I can never wish you a greater happiness than this!” And she says this simply because they are all together...I can’t even type it without sobbing.

As I read to her, as she often does, Z observed my emotional reaction and asked, “Mom, is it touching?”

Honey, to me, just about EVERYTHING is touching.

You can just look at my red, blotchy, slimy face – or your brother’s: Yes. It’s touching. When a bird lets another bird go ahead of it at the birdfeeder? Touching. Something on the radio about helping people? We will probably at a minimum get misty-eyed. When there’s a video of a baby seal? Touching. Human interest piece in People magazine at the dentist? All those interspecies friendship books? Elderly people holding hands? Yes. Anything to do with animals, life, death, romance, family, and so forth is fair game for being touching.

At the same time, on my own, I’ve been dipping into The Highly Sensitive Person, in which I was *stunned* to read that 42% of people describe themselves as “not sensitive at all.” And here I’d always thought everybody was just better at managing their feelings and reactions than I was – because there was something wrong with me. Something weak, or ignorant, or lame; a lack in me which rendered me less adept than the majority of people...People who didn’t seem to cry or laugh quite as readily, people for whom interacting with others, for example, seemed to be much more clear cut, less laden with strong, overwhelming feelings, and MUCH less daunting...

I’d assumed everybody was “like me” and that it was my “fault” for being unable to “master” my feelings and reactions. Now I see another healing, liberating spectrum! I wouldn’t quite put my Z in the “not sensitive at all” category, but on a sensitivity spectrum we clearly occupy different spaces. And this holds true for her sensory processing as well: she’s impervious to hunger, noise, lack of sleep, etc. in a way that’s inconceivable to the SPD-ers* in the family.

In Figure I, I’ve charted approximations of our family sensitivity levels relative to one another (P=Pardner, Z=my daughter, G=my son, F=me). This is obviously simplifying and generalizing, but it also clearly indicates a Full Spectrum of sensitivities just within one family.


Figure I – Touching Chart: From Squishing-Touching to Not Touching

Knowing that others have different sorts and levels of sensitivity, doesn’t mean we ourselves necessarily should attempt to change our own feelings and reactions – even if we are able (?). But that knowledge opens our eyes to possibilities of different perspectives - and perspective, as I tell my philosophy students, is the key to a lot. It’s marvelous to see how we all shine in different ways. It’s intriguing for me to imagine the experience of not sobbing at the drop of a hat; for Z, learning about things that are “touching” is inspiring her to find her own tender spots.

Guess the Full Spectrums will keep learning from each other.

We just started By the Shores of Silver Lake. You know, the Laura Ingalls Wilder where Mary goes blind and Jack, their loyal, loving dog dies? It’s going to be you-know-what.

Love,
Full Spectrum Mama

* SPD-ers: people with sensory processing differences





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!


Wednesday, November 25, 2015

THE COMPLAINT DEPARTMENT


Are you having an idyllic Thanksgiving? Food perfect? Healthy, too? Moderate?

Everybody you’d ideally want to see alive, and present, and getting along?

Yes? Then you might want to read no further. Your seasonal gratitude is clearly appropriate.

However, for some of us humans, this is the time of year when we may be particularly inclined to draw our attention to THE COMPLAINT DEPARTMENT, where the inappropriate, the maudlin, the whiney, the greedy, the brutally honest, and the heart wrenching are all welcome to be COMPLAINED, once a year, in our famous COMPLAINT DEPARTMENT post, coming up in January.

Accordingly, I, Partial (incomplete) Monochrome Persona (PiMP), am once again soliciting COMPLAINTS on behalf of Full Spectrum Mama for THE COMPLAINT DEPARTMENT.

Have you any COMPLAINTS? We at THE COMPLAINT DEPARTMENT welcome ALL acceptable COMPLAINTS -- from first-world to “special” stuff about “special needs” to devastating -- with the understanding that the COMPLAINING, and thereby sharing, of COMPLAINTS may lead to a certain degree of liberation and/or solidarity.

More specifics and sorts of COMPLAINTS can be found here, here, and here.

Full Spectrum Mama herself has generously offered the following acceptable COMPLAINT, which gently skirts the border between first-world and genuine: "Because I've spent any free moments during the last few months working on my book proposal, I haven't been posting as much as I'd like and I feel lame."

Please send your COMPLAINTS to:
jineffable@gmail.com.

Sincerely,
Partial/incomplete Monochrome Persona
Factotum, THE COMPLAINT DEPARTMENT
Guest writer/Troubleshooter @ Full Spectrum Mama