SITTING STILL

Dear Persons,

We recently went to my daughter’s middle school concert. To my amazement, my 18-year-old son sat through the entire concert without fidgeting, talking, or calling out unexpectedly to kids onstage. 

It was the first such event I’ve ever attended without breaking into a cold sweat from anxiety over his behavior. That includes, over the years, many, many concerts, movies, plays, musicals and other performances during which attendants are expected to be quiet and attentive. 

I’ve been a mostly solo (my partner, Pardner, is a chef/owner of a restaurant) or entirely single parent for most of my children’s lives. With a couple of notable exceptions, I’ve spent every weekend on my own with them for the past twelve years or so. 

It’s been really hard—and REALLY wonderful. 

Early on, I decided I wanted to be a person and do things, and so I’ve been dragging them along to events all these years. 

I hadn’t realized how much G’s restlessness affected me until the other night. 

There are so many little ways in which life can feel daunting. What we usually do is soldier on, right? 

But it’s amazing to consider all the possibilities that open up when you actually feel free to enjoy an event rather than keep most of your energy on someone sitting next to you. 

Sitting through that concert like that was kind of a big deal. 

And it got me to wondering: How much energy have I wasted on worry over these many years? 

I usually explain and justify my worries to myself as solution-seeking behavior. 

But no amount of anxiety could possibly have hastened G’s development into the amazing young man he is now. 

And, to be honest, my worries probably kept my brain too busy to come up with good work-arounds and ideas. 

Plus, ALL ALONG, G has been the happy, kind, funny, fun, loving person he is now. Just a bit more fidgety. (And, truth be told, he wasn’t always all that into much of the stuff I dragged him to…)

Yet I persisted in worrying much of the time about G’s fidgeting and behavior—and not only insofar as it affected him at the time! I also future-catastrophized about potential impacts on his career and how it  might alienate him from the “regular” social world. 

What good did/does all that worrying do? How many other useless ways do I spend my time anxiously mulling over and anticipating possible disastrophes? 

We all struggle with how to be in society. And knowledge around expectations and societal norms comes slowly to some. So do the sheer physical ability to settle down and key mental capacities, including emotional regulation. 

So why do I torture myself unnecessarily? 

I know I’m not the only parent (or guardian, or loved one) of a child with differences (or parent, period) who does this. 

Frankly, I wasn’t much of a worrier, pre-kids. Somehow the little worries of new parenthood mushroomed over the years—sometimes with good reason—into a constant stream of nervousness. 

Looking back, I wish I could’ve enjoyed myself more as a mom, instead of only now realizing all this. 

I’m going to work on finding a way to avoid breaking into a cold sweat when I go places with my children. 

More to the point, I’m going to take a close look at the ways worry has come to pervade so many areas of my life that it’s often depressing and sometimes even debilitating. 

Because I have a hunch that in all cases there’s a similar element of complete futility.

I’m going to try to be gentle with myself in the process: This worry has developed as a result of a lot of hard stuff. 

But I’m also going to be firm, because I’ve had enough!

Worry is my issue and I’m going to own it. 

I cannot “control” my kids anymore now that they’re teenagers. Nor can I make everything right for them!! In fact, I never could entirely do either. 

I can see now that G has moved on. 

Time for me to do the same.

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!

You are invited to the Inlinkz link party!

Click here to enter

"REAL" AGE

Dear Persons,

If you have a child or children, do you remember when your first baby was a newborn? Remember that feeling that your life had changed irrevocably and the terror of, well, anything and everything?

Then your child starts to become more mobile and you wonder, what was actually so hard about that baby who couldn’t go anywhere or reach beyond the ends of their arms???

Around this stage, you may also encounter the added bonus of “non-typical development,” which adds a whole ‘nother level to the process. 

Next, usually, your child enters the school system and a whole new batch of fears kicks in, right? (People who are reading this from the perspective of the child and not the parent — or from both positions — may even have memories of this time.) What was so, sooooo hard about the days when you could kiss every boo-boo and make it go away? When learning consisted of stacking blocks and finger painting rather than specific and regimented tasks that might or might not be suited to your child’s learning style, abilities, and/or neurology? When social interactions consisted of taking or sharing playground trucks, healthy snacks, and dress up costumes? 

And then, really suddenly, people, the end of high school looms. I actually find this next stage of transition the very most terrifying of all (I know - aren't I encouraging?). 

Over the years, as I have gotten to know my first child as a human being, my love has grown exponentially from the more-than-I-ever-could-have-imagined level I felt for him as a newborn to There Are No Words. 

And, over those same years, my son has grown — but not in the same ways as his typical peers. He was a giant baby, 110th percentile (which means only 1 in 300 were his size), but didn’t talk much until he was at least three. His apparent physical age far surpassed his actual physical age. People would think he was four or five when he was two, and wondered why he didn’t speak. When he was four and we went to China to bring his sister home, people thought he was ten. They laughed hysterically to see this ginormous child in a stroller (it was 104-degrees and walking was sensorially too much).

Now, intellectually, my son is probably quite a ways ahead of most of his peers. Hormonally, he is right on par. But socially, or common sense-wise? He’s far, far younger. 

We recently visited friends in Cambridge, and G (16) played at length with an eight year old who is also on the spectrum. The other kid’s parents also had a 15 year old, but we all agreed the younger child was a better fit because their 15 year old was “much older” than G. It was wonderful, if inevitably slightly painful,  to be having this conversation with people who very much approached the whole matter from a perspective of total equality and inclusion. 

My love for my second child, my daughter, has grown similarly; and she, too, has grown —  in most ways typically, but she has her areas of difference as well. For example, she was in diapers until she was four years old, which I found exasperating until we figured out that — because she had been in an orphanage — she “needed to be a baby a little bit longer.” When we figured this out, it really helped her to have words for her feelings - and she learned to ask for other things that helped her in this regard, such as being carried or held in her baby sling (she was still tiny well into elementary school). 

My daughter’s emotional age seems quite a bit younger than her social age, since she is the most socially-adept and -powerful person I know. Her common sense “age”? A million. 

How can we assess and address actual, “real” age in effective, accepting ways? 

I recently heard about “the two-thirds rule:” apparently, many people on the spectrum may be seen — as compared to their peers — as developmentally about 2/3 of their biological age. This notion helps in some ways, as I observe my son’s atypical development and hope that he will eventually be able to achieve independence and everything else he wants, much of which seems very far away right now. It makes sense for me, too, since because of my divergent neurology (and perhaps also because of childhood and adult trauma) I only started to integrate and understand some very basic things about life — things most people “get” much earlier — in middle age. But it also seems like a massive generalization and perhaps might also be perceived as a little patronizing. And I don’t think most developmental models incorporate areas in which my son truly excels way beyond most teens, like, among other things, kindness and compassion.  

Once again, I don’t have “the answer.” Certainly, estimating age for a bunch of different categories like those I discuss above (intellectual, social, practical/common sense, hormonal, biological, physical, emotional, developmental, compassion/kindness) and then taking an average of these to estimate someone’s “real” age won’t work. As well, every individual is different, and every stage of life is different for every individual…We might well view age as very amorphous and multiple, and even refer to individuals’ “ages” instead of a single age.

What I do know is that it’s important to take a nuanced approach to “real” age. We need to celebrate and presume competence in areas of maturity and independence, build strengths in areas that are still developing, and accept that some of us will always have differences - whether they render us more advanced or less so - in terms of our skills and capacities. 

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!

An InLinkz Link-up

LEARNING TO “FLY” – A NEURO-MOMENT

An October 8^th NEW YORK TIMES “Profiles in Science” piece on Michael Dickinson and fruit flies (Drosophila melanogaster) completely (technical term alert) blew my mind. Although fruit flies, obviously, have very small brains, the flexibility and mutability of their neurons result in a per-neuron superior functionality than is found in humans. Because “the presence of different chemicals called neuromodulators in the fly brain can change how a given group of neurons acts at different times” (http://www.nytimes.com/2013/10/08/science/focusing-on-fruit-flies-curiosity-takes-flight.html?pagewanted=all&_r=0), fruit flies have an astounding capacity for (relatively speaking, of course) adaptation and development.

I was inspired by this article to do a little research on neuromodulators in humans and it turns out this is a pretty new concept in neuroscience, one which looks very promising for human development in the long term.  Neuromodulators include serotonin and dopamine, with which scientists have been experimenting for decades with somewhat limited success; however, our knowledge of how neuromodulators influence and transform brain activity is now expanding exponentially.

Dickinson’s work will contribute to this understanding, as well as to our respect for the complexity and genius of the lowly creatures he studies. The wonders of flying, he suggests, rest chiefly in the brain. Just as the brain flexibility of fruit flies enables flight in an ever-changing variety of circumstances, so might the relatively less-flexible human brain be influenced to adapt and develop -- if we can more effectively identify and utilize neuromodulatory mechanisms. 

There’s a lot of talk about neuroplasticity around autism, hinting at enhanced brain-healing capacity in spectrum-y brains, but I am encouraged by the potential for healing, among other things, brain traumas (such as are found in attachment disorders and PTSD) as well. These neurological differences – autism, attachment disorders and PTSD - are all significant factors in our Full Spectrum household. (Please stay tuned for an upcoming post on HEALING in a Full Spectrum!)

Apart from the NEW YORK TIMES’ “Science” section, just a quick dabble shows the world of neuroscience is all abuzz (and awiggle) in popular culture.

In VOGUE, Rebecca Johnson’s “New Frontier” (October 2013) profiles the neuroscientist Cori Bargmann and her work with a tiny worm (the nemotode C. elegans) that has 302 neurons (humans have 10 billion). Bargmann’s work sketches filaments of hope for brain-science progress between increasing computer capacities, advances in electrodes for the measurement of nerve cells, and improved microfabrication…She sees psychiatric medicine as just one of the more promising subfields among the many in which neuroscientific developments will benefit humanity.

“Now,” Bargmann marvels in VOGUE, “we are not just watching the flow of information [via neurons] but trying to change it.”

One part scary, one part breathtakingly hopeful, eh?

THE NEW YORKER recently published “Mindless: The new neuro-skeptics,” by Adam Gopnik, about the mind-brain divisions and debunkings posited in some circles (September 9, 2013). Gopnik likens the “brain” camp, with its currently culturally dominant emphasis on neuroscience, to Mr. Spock (now you know I love a good Star Trek reference, plus Spock was my pretend-fiancé when I was little). The “mind” camp, which sometimes compares neuroscience to the now thoroughly discredited early-nineteenth-century “science” of phrenology (or mapping the mind through the shape of the skull), he frames as akin to Captain Kirk. He points to the rich literature and inquiry on both “teams” and concludes that both responsibility and possibility lie in the whole package – mind-plus-brain (plus environment), all working together in a way so “complex and contingent” as to boggle the, ahem, mind.

Complexity notwithstanding, evolution of many sorts is ongoing, whether scientific, philosophical, even personal: “We learn and shape our neurology as much as we inherit it,” says Gopnik. ”Our selves shape our brains at least as much as our brains our selves.”

What he said.

More neuroscience-boom proof: the Nobel Prize in Physiology or Medicine for 2013 went to some neuroscience dudes…And Obama recently launched the BRAIN (Brain Research Through Advancing Innovative Neurotechnologies) project, an unprecedented neuroscience initiative (in fact, Cori Bargmann will co-chair this endeavor).

But then, working on the mind is nothing new.

From ancient philosophers to contemporary mystics, wise people have always known it is possible to train (ideally) and re-train (less-ideally, but more commonly) the mind. From Plato’s (and his student, Aristotle’s) thoughts on ideal environments and habits for exercising the virtues, to the Buddha’s writings on practices to calm and discipline the mind and actions; from Confucius on good habits and self-discipline in harmony (the Tao), to Teresa of Avila on practicing devotions of imagination and contemplation; from Thomas Merton on spiritual disciplines as the way to liberation,* to Starhawk on “psychological techniques and personal disciplines” as tools for transformation;** and on and on (I’ve left so many out in the interest of brevity!!)…all the great traditions offer tools for behavioral, mental, emotional, and – sometimes – spiritual development of the mind.

Now we are just beginning to enter this heretofore sci-fi realm of attaining real knowledge about the brain itself. It’s exciting.

Disclaimer: Full Spectrum Mama loves her children and self just as they are, and is NOT looking for a “cure” for Asperger’s!!!! ***

But wouldn’t it be great to have the option of tweaking our own neurology in positive ways? Even if we have no desire whatsoever to change, this knowledge itself will be awe-inspiring: we have the potential to understand, if not emulate, what Dickinson calls the “great success stories” borne of adaptable, flexible (fruitfly) neurology.

Full Spectrum Mama is certainly gung ho about adding new tools to our quests for health and healing, especially in terms of reducing suffering.  To wit, my neurology has always been sensitive and prone to migraines, but with age and/or a major concussion a few years back and/or something else (?) my migraines and PTSD triggers have increased dramatically over the years. I’d try just about anything – meditation to neuromodulation - to soothe these neurological responses. Just – don’t you touch my Special Interests!

I guess that last is the key, though.

 Bargmann bemoans the “dismal state” of today’s psychiatric medicines, and the field of neuromodulators remains in its infancy. All the beautiful possibilities mentioned in these articles are still just ideas. Early on, would tweaking my neurology result in unintended consequences such as losing my precious Special Interests or other things about me that I treasure or see as integral to who I am? Furthermore, the idea of such tools being used against our will or unbeknownst to us is unsettling, at best. “Neuromodulism” (I just made that up) could become “the new eugenics.” Ew.

 With all these caveats, I am still intrigued by the potential for human beings to develop and adapt more effectively. Reducing certain kinds of obstacles to flourishing, such as unwanted manifestations of mental illness, physiological trauma and physical pain, will help us “fly” higher – and with more flexibility.

Now come on, Homo sapiens! If D. melanogaster can do it, we can too!

Love,

Full Spectrum Mama

* Admittedly, Merton’s deeply entwined Catholicism and Zen Buddhism were somewhat controversial, but FSM always errs on the side of acceptance.

** http://www.starhawk.org/activism/trainer-resources/nonviolencework.html

*** Speaking of Asperger’s: between you and me and the fencepost, take a look at the picture of Dickinson and then read his words and ask yourself who’s got Asperger’s all up in that article.

First Anniversary Lists III: Choosing your Battles

One initially formative idea for Full Spectrum Mama was that if something worked in our household it might be useful across a wide range of circumstances (consistent boundaries come to mind). Or, at least, our mistakes might prove instructive (diarrhea [still working on that one]).

But surety in these complicated times has never been a strong suit of our household. Readers have been more likely to laugh or cry with us than to follow my commands.

The first thing that comes to mind when I think “parenting solutions” is, um, drinking…For those who are not struggling with substance abuse issues, may I suggest a moderate portion of your preferred mood altering substance? FSM never cottoned overmuch to vino until single motherhood hit. Now, if she can remember, a glass of wine or beer definitely eases dinner and bedtime transitions [note to self: make note to remind self to drink wine].

And then there is the “solution” – much needed in a Full household - of picking which issues and behaviors to address and which to drop. In the matter of choosing battles, the grandmama of all battle-choosing advice comes to mind. Sure, it’s a cliché. On account of because it’s super wise:

The Serenity Prayer 

God, grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And the wisdom to know the difference.

Or, for those who are not religious or do not feel that serenity comes from “God,” here is a version from The Serene Atheist (http://sereneatheist.blogspot.com/2009/10/secular-serenity-prayer.html):

Through my efforts, I gain the serenity to accept the things I cannot change; 

courage to change the things I can; 

and the wisdom to know the difference.

 

Years ago, during an unrelated family mental health scenario, I learned that some traits are known as ‘characterological.” This term refers to aspects of personality and behavior that are neither strictly psychological nor neurological; instead, they are character traits – good and bad – that can be remarkably hard to change. Such traits are not reflections of mental illness or neurodiversity per se but have to do with the will and desires and tendencies of any individual. Thus, one might be characterologically prone to greed or generosity, kindness or cruelty; one might be shy or bursting with flair, honest, sneaky, sunny- or surly-natured…

Character can be worked with, its better aspects supported and its lesser elements healed and diminished; but it cannot really be eradicated.

It’s useful to try to get a handle on what’s what in this area, and to know which behaviors are

unhealthy, pathological or reflections of disorder

or

functions of disability or developmentally appropriate

and which are

basic, natural self-expression.

This can bring some insight as to whether or not – and possibly how – behaviors can be ameliorated.

It’s also imperative to know as much as possible about your unique circumstances so that you don’t lament OR excuse inappropriate things, or confuse character with a difference, disorder or disability.

For example, it’s hard to say how much of G’s generosity comes from his character and how much from his Aspergian non-attachment to most material goods. Part of my job is to help him develop enough common sense to distinguish between generous and reckless giving. Z’s giant hambone consists of one part attachment disorder and one part inborn characterological star quality. She needs to learn how to balance and channel that energy, but she will always be a VIP.

Figure I – A FULL Spectrum: from (foreground) Z’s jumping into front of the camera-field “Hi, Look at ME: I am fabulous! All The Time!!! Hey! Did you look away? Hi!” to (background) G’s looking-away expression of “Stripes. Stripes. Striiiiiiipes.” Not to stereotype, but this is…typical. (At the Sol Lewitt exhibit at Mass MOCA.)

The camera lens has captured Z in full form, oozing pizzazz. I cannot imagine telling her to back off or tone it down.

G’s absorption in art here seems part poetic, part flakey, part characterological, part Aspie. What should I do to get him to look at the camera for once, shout at him? I could say, “Pay attention!”

Nah.

Everybody’s got their stuff, right? Whether you (or your child or someone else) are attachment disordered, on the autism spectrum, wonderful in 99 out of 100 categories, mentally ill, spoiled, temporarily or permanently sweet or grumpy or cranky…having a solid perspective on what can (can’t) be changed and what should (shouldn’t) be addressed and healed can be immeasurably valuable in the day-to-day. Knowing what’s what – insofar as that is possible - can help you choose your battles!

Choosing Your Battles List

1.     Safety issues are non-negotiable.

2.     Public humiliation issues are at the discretion of the individuals involved. Only YOU can gauge the unbearable, loathsome edge of your acceptable-humiliation zone.

3.     Is X expressing his/her character or his/her pain/disability/disorder?

4.     Is Y able to change his behavior him or herself or does s/he need help from you?

5.     Are you able at this time to offer that help???

And…

6.     The Ultimate Battle Choosing Question: Can my child (or I, or those involved) learn, benefit, grow or heal from this situation, or should I just let go/accept it?

I have turned this information into a Flow Chart:

                                            Figure I – Choosing Your Battles Flow Chart

This handy, dandy flow chart may help channel typical concerns into decision-making success. As a bonus, options for simple suggestion as well as actual intervention are included in each branch. Whenever I am mired in a real-life situation I always make time to refer to a list or flow-chart, which I naturally have at the ready.*

Next Week: my final anniversary list: "The Complaint Department."

Love,

Full Spectrum Mama

*…in my dreams.