Monday, September 28, 2015

DEAR PERSONS

Dear Persons,

Z has always laughed every time she hears or reads the word “persons.”

I finally sat her down and explained to her that “persons” is a word that has a deep and complicated history. That personhood was for many millennia and in many places reserved for only a certain type of people, such as men, or landowners, or white people, or people of a certain caste or religious faith or neurology...

I explained that even though it might seem silly or old-fashioned when you read or hear that word, it’s a strong word that carries a lot of goodness and respect. That she, as a female of Chinese descent, might -- in many settings over the course of history --  not have been considered a Full Person. That even now she will not necessarily earn as much as a man, or be accorded equal respect.

We are reading Malala Yousafzai’s autobiography, I AM MALALA, together, and she is learning how hard life can be for girls and women in many parts of the world. She has already experienced instances of racism at school. Knowing she’s a Full Person gives her grounding and power to stick up for herself.

This conversation inspired me to begin starting my posts with “Dear Persons,” because my readers are dear to me, and because they are all Full Persons.

Love,
Full Spectrum Mama





Friday, September 18, 2015

DETECTIVE WORK

The Full Spectrums went to see a movie a few weeks ago, which is, in itself, a rarity. We went with my Meeting Friend and her family, and chose the only movie that was playing in a matinee, Mr. Holmes.

During a sad, moving part of the movie where Sherlock is really, really old and feeble and decrepit and does something pathetic, Z suddenly laughed aloud. I cringed. Perhaps she was uncomfortable, but it just felt very awkward and inappropriate...I tried to convince myself it was a mistake, but it happened again a few minutes later during a similar part. Everyone else in the theater was quiet...real quiet.  

“Good luck getting old,” said my Meeting Friend as we left the theater. As we always do, my dear MF and I looked for the bright side: “She’s very practical and realistic!” we assured one another; “Great sense of the absurd!”

On another note, the Full Spectrum children are very into any and all Secret Agent/Detective-y stuff, and were absolutely fascinated by the way Sherlock Holmes can detect things about people just through observation. As we walked back to the car, I asked them what Sherlock Holmes could know about them just by using his powers of discernment.

Z answered immediately:”That I’m a sister, and that I was adopted.”

All G had to say was, “That I’m awesome!” [See forthcoming post, “AND MODEST, TOO.”]

I wanted to hear more from both children, though I found Z’s response quite touching, so I told them, “For me, I think Sherlock Holmes could tell that I am a mother, wife, and artist. Those are the most important things to me.”

“I’m awesome,” G repeated.

“I’m mean,” said Z. Though it’s sometimes true, I don’t think mean is who Z is. I looked at her skeptically. “Well...I can be mean,” she amended.

“Don’t you want to change that?”

“What do you mean?” One thing that IS who Z is is a master obfuscator.

“Don’t you want to not be mean?”

She paused. For a while. “...Yeah.”

“Do you think you can change? I do! You’re just a kid still!”

“I think” – very matter-of-fact – “I will always be a little bit mean.”

“Why?”

“I don’t know, but I can tell I always will.”

“Well...that is something you will always have to work on then,” I assured her. “I know you can do that.”

“Huh?”

Hmm. Guess that conversation was over. (WHO, exactly, is in control all up in here?)

When I started writing this blog, I did not know anyone “like us;” I felt alienated, alone, and, much worse, so confused about parenting my two very different – from each other, from the “norm” -- children.

I felt like a failure in the most important role I’d ever had: motherhood.

I did not know, back in the day, that Z’s seemingly cruel laughter, her obfuscation, her self-proclaimed meanness are all attachment-disordered behaviors. I would have blamed myself for not raising her to be kind...I would have blamed her for being unkind and manipulative.

A number of factors (my own kinds of detective work: reading, researching, developing an online community, meeting others through the blog, finding a good specialist in attachment disorders, having a Meeting Friend) have helped me to become someone who is able to share the fruits of my detective work  in hopes of reaching people who feel as I have felt in the past (confused, alone) and feel now in the present (confused, alone, AND inspired, connected, and – every so often – just a little wise in my old age).

As for Z, if I were to name a third fundamental aspect of her identity that Sherlock Holmes might have discerned, I would say that she has a fabulous, quite broad sense of humor. That may be her, and OUR, saving grace.

Love,
Full Spectrum Mama

Tuesday, September 8, 2015

WHAT IS PROGRESS?

I read a lot (a LOT) of posts – whether in adoption communities or neurodiverse ones - about how people’s children are “making progress.” Progress with sensory differences is one major theme, and uplifting, inspirational posts can be found in abundance. I find a lot of news around “progress” with a range of challenges in autism as well.  Since I tend to only follow writers who start with the basic assumption of accepting their diverse selves (and the diversity of their children) unconditionally, as they are, I typically enjoy such posts, and think they give us all hope.

I've read and learned a lotlotlot about adoption and attachment disorders, too; and I'm grateful to have done so since it felt like we were desperate and failing as a family until we gained some context and strategies for my daughter's behaviors. For Z, who was adopted and has struggled with an attachment disorder, progress means healing - gradually - enough to let go of attachment disordered feelings (distrust, panic), and the habits and actions that come with those feelings. Progress, in Z's part of the Full Spectrum, is a unilaterally good and necessary thing. 

I think a lot (a LOT LOT) about how much I do for my son, who is on the autism spectrum and has motor and executive function challenges, compounded by raging teen hormone fog (that’s a medical term). I wonder how much my “help” is actually enabling him -- in a codependent, non-helpful way -- to not learn how to do things, take responsibilities, etc. I try to remember that, but for safety concerns, it’s generally best for him to learn to take responsibility for himself and do his own stuff (dishes, cleaning, “organizing”...) even though he may actually make a much bigger mess doing so...

He’ll never learn to live even partially on his own if I keep waiting on him hand and foot – something I do basically because it’s easier for me. As G takes on more day-to-day tasks, that is PROGRESS – and it’s a good thing.

He’s also made huge strides socially, verbally, in athletics...His momentum in all these areas is a testament to his hard work and efforts.

As a neurodiverse adult, however, I sometimes question a narrow view of the necessity and function of progress. I also I see myself making so much less “progress” than my son does…

Big breath.

I wonder if, for me, it’s at this point more about acceptance, whereas for him he’s still growing so, so much.  While his presence during this period of great growth certainly benefits those around him in increased awareness and good company, it’s primarily about him. Teaching people is not his job, being his best G is his job.

My job, as his mother, is to help him become the most content, competent person he can be, while respecting his unique wonderfulness. I would also like him to “progress” in self-advocacy: both in learning what he needs to succeed socially, academically, and so forth, and in being able to express those needs in order to grow into who he wants to be. In any case, much as he has never, ever been interested in even the slightest efforts at “passing,” he wins most people over with his exuberance and huge heart and humor.

Me, I’m still growing inside to some extent, but my PROGRESS is really more about learning about neurodiversity and spreading that awareness, as well as advocacy in general -- and for my son and me.

In images, I think it might go something like so:

Figure I – Progress for G and Z



Figure II – Progress for Mama



Like so many phenomena, progress may be viewed as a Spectrum: for my daughter, it's a straightforward positive; for my son and me, it's more complicated. We need to make sure that our attempts at progress are in line with our inclusive values, rather than succumbing to the biased standards of a neurotypically-inclined mainstream. Ideally, my efforts at public advocacy, along with those of others in this blog hop and beyond, expand the possibilities for defining -- and celebrating  -- our own progress, goals, and selves.

Love,
Full Spectrum Mama




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

Sunday, August 30, 2015

MIDDLE SCHOOL PRAYERS REVISITED, REVISITED

I take it all* back. I am terrified.

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

Thanks and love,
Full Spectrum Mama

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

Tuesday, August 18, 2015

LEAN IN, SPD STYLE

Picture my physically adept daughter sitting at the dining room table. She is leaning back in her chair with her feet up on said chair. I remind her that feet are not allowed on chairs at the dinner table. She removes her feet...but somehow manages to retain the exact same lean, with an expression of utter disdain and indifference.

Now picture me sitting at a different table, working in the faculty lounge of the local community college. You will notice – but I will not, at least until my neck pain tells me something is off, several hours in – that I am sitting at an extremely awkward angle.

 
                           Figure I – Awkward and Ultimately Injurious Angle of Seatedness, Not Noticed

Those of us with sensory processing differences may find ourselves in a myriad of awkward and uncomfortable situations/positions because of our divergent vestibular and proprioceptive systems, the systems that tell us where we are in space and how our movement and body location relates to what is around us.

Whereas my daughter Z’s balance, movement, and self-awareness in space are appropriate and allow her to do things in healthy, if sometimes snotty, ways, I fear I’d be barely able to function without my many, many years of ballet and yoga.... G’s study of Tae Kwon Do has done similar remediation for his vestibular, motor, and proprioceptive functioning.

I was uncomfortable sitting there at a random angle from the table, but I am so used to feeling awkward that I didn’t even wonder why, or take steps to address my discomfort, until my neck pain began to eclipse my concentration. When the normal smells and lights and sounds of daily life hurt your brain, what’s a bit more pesky input?

Becoming aware of these goofy and discomforting phenomena is the first step in trying to devise ways in which to avoid actually harming myself. But here’s the thing: mostly, I don’t even know I am doing things “differently” until something lets me know – another person (“Hey, [FSM], why don’t you put on a sweater, since you are shivering?” “OHHHHH! Great idea!”), or actual pain...

What other things do G and I do like sitting at wide angles to tables? I don’t even know. Probably plenty! Do you know a wide-angle sitter? A curb-tripper? A walker-into-walls?

Love,
Full Spectrum Mama


Welcome to the Sensory Blog Hop -- a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it's like to have Sensory Processing Disorder and to raise a sensory kiddo! Want to join in on next month's Sensory Blog Hop? Click here!


Wednesday, August 12, 2015

MIDDLE SCHOOL PRAYERS, REVISITED

As people and as parents some of us are lucky enough to have a perfectly generous level of empathy for others as well as a balanced perspective on events. Others of us learn to understand others’ feelings and have perspective on our own lives the hard way(s).

Last year saw G’s heretofore good grades plummet, but he was accepted and happy at school. It was clear that G had chosen, consciously or un- to put all his energies into that realm of his life that had for so long been an area of suffering. For a “typical” parent with an academically gifted kid this would be a disastrophe but the perspective and experience I’ve gained (kicking and screaming) about my kid show me that a decline in grades is a small price to pay for the gains he’s made in confidence and self-esteem.

By the end of last year, G’s team had begun to identify effective strategies for executive function and focus in order to improve his academics; and I am very much hoping we can bring more balance between the social and the academic this year in 8th grade. That’s going to be a tall order, but at least I am only mildly terrified this year. (Sure last year was a social success, but there can be so much drama in middle school, for middle-schoolers of all persuasions, and peer-group rejection is so common.)

Here are two posts I wrote around this time last year, in case they are of use to any readers:

            This one is about my deep terrors for my son as he entered Middle School:
                        MIDDLESCHOOL PRAYERS 

This one is about trying to find other kids who might be extraordinarily challenged entering Middle School:
                       TEAM FRIENDLY FACE 

And here’s an inspiring thought from a VERY WISE Dad I know and love, from his facebook page (posted with permission, lightly edited for anonymity); it helps me remember that I know my child and I know what he is capable of...:
Happy birthday to my son [name]. Apologies for this post, son, but “I had to say it.” The year that he was age 3 I was on lecture tour. In Indiana he was the only black child in childcare. After my talk a teacher said, “I’m sorry to tell you, sir, but your son is slow.” The next week in New Hampshire a different childcare teacher said, “Wow! Your son is brilliant.” I’d already played a significant role helping parent my three much younger brothers and [name] is my second son. I knew he was blessed. Now he has a bachelor’s from Princeton and both a Ph.D and J.D. from the University of Virginia. At no point did I give permission to some stranger to define my child (or his 3 brothers). If you’re a parent, grandparent, teacher, friend... I suggest you follow the same route. You have to nurse greatness to find greatness.

Obviously, blessings and greatness come in all stripes and do not necessarily mean academic blessings and/or greatness, but I plan to nurse the academic aspect of my son better this year, along with his great heart -- and I plan to make sure the rest of his team does the same.

Wishing all parents and students and teachers and staff many blessings for a smooth transition into this next school year. People who are already fully-equipped for school should not be posting that on facebook and making the rest of us feel inadequate.

Remember, if we do not believe in – and nurture! -- the unique greatness of our loved ones and children, who will?

Love,
Full Spectrum Mama




Tuesday, July 21, 2015

MORE OR LESS

We’re more and more aware that our sensory sensitivities are intricately interwoven with our mental, emotional, physical, and neurological proclivities. This holds equally true – in very different ways – for my son and me.

Just as I often suspect I feel “too much” as compared to others, I think too much as well. Here’s an example: I was in a local coffee shop, reading a sign on a muffin: “Uni        Corn Muffin,” it read, with the “Corn Muffin” part all typed and official and the “Uni” handwritten.

I began to consider this puzzling marker...Did it herald some sort of prestigious, single-source, locally-farmed corn? Just one particular type of corn, a Silver Queen or Butter n Sugar perhaps? Or were they referring, trendily, to “uni” as in sea urchin?

I definitely didn’t want that!

“Um...what does that mean?” I asked the incredulous cashier, pointing to the sign.

“Unicorn?” she said, with pity.

Oh.

Pardner asked me not long ago, “When do you decide to put on lipgloss?”

I think he expected an answer along the lines of, “When I don’t have any on.”

I, however, gave him a very long, involved answer, touching upon the vicissitudes of being a ghostly-looking white person, what sorts of textures there are in lip things, the many, many sensory and chemical qualities that can be wrong with various lip-related products, what makes for a good lip gloss, and, most importantly, how incredibly painful it feels for me when my lipgloss wears off in even a tiny part of my lip...


                                              Figure I – Amount of Dry Lip That May Lead to Crisis

There’s a potential world of pain in a dry lip, and I say this as someone who bears the chronic pain of rheumatoid arthritis with nary a whimper (rheumatoid also brings me raynaud’s syndrome, which adds to dry lip – help!). I say this as someone who has lived quite a life and is amply endowed with “perspective.” I am pretty butch...but don’t leave me stranded without my chapstick. Burt’s Bees original, to be precise, with the Lip Shimmer on top.

Some of you will be reading this aghast. Indeed, I might be called an over-thinker, and/or an over-feeler by many, be it regarding muffins, lipgloss, or just about anything else. Others will be nodding along, having experienced life with sensory processing differences.

I am not saying people with high physical sensitivities necessarily have high emotional ones, just that our physical, emotional, neurological, intellectual, and all other “parts” are so intricately related. Sometimes our “parts” complement each other – and sometimes they exacerbate each other. We notice and feel and think and so on, more or less, more and less, more and more, less and less....It’s part of who we are.

Take my G, he’s a smart, caring, and thoughtful giant little dude, but, as I have mentioned before, he wouldn’t notice if there was a pound of schmutz on his mouth. In sensory processing lingo, he’s an “under-responder.”


                                    Figure II – Putative G Mouth: Yes to Schmutz, No to Crisis/Cleanup

Perhaps partly because of this less-sensitive-to-irritants way of being, G is so relaxed and natural about life. He’d read “unicorn,” no problem. He has a carefree heart. He feels a lot, but his feelings, so far, are remarkably positive. In contrast, I have to work pretty hard to stay upbeat, because of all that’s literally weighing on me. Being more sensitive overall – an “over-responder” - has a lot to do with this need to make quite an effort just to function at times.

G’s executive functioning is almost non-existent, and I know this, along with some social differences typical of neurodiverse persons, as well as non-noticing of schmutz (and other hygiene issues), will bring him many, many challenges in the years to come. But how about his EQ (emotional intelligence)? Off the charts. What balance and wholeness this seems to bring him!

Just yesterday, G pulled his socks on over soaking wet feet without screaming. In fact he was smiling and chattering while he did so. How liberating would that be? I wouldn’t change either of us  – and I am not crazy about the judgy aspect of terms like “over-“ and under-responsive” – but I do find our differences fascinating. I watched him doing this little thing I could never do, and I marveled at the range of ways of being whole, at how our mores and lesses -- RATHER THAN MAKING US MORE OR LESS -- make us, us.

Love,
Full Spectrum Mama



Welcome to the Sensory Blog Hop -- a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it's like to have Sensory Processing Disorder and to raise a sensory kiddo! Want to join in on next month's Sensory Blog Hop? Click here!