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!

An InLinkz Link-up

THE MEGA MASTER

Two weeks into this semester of Comparative Religion, a student called out at the end of class, “Dr. [Full Spectrum Mama], this is kind of a funny question but…are you [G]’s mom?”

It turns out that this fellow was one of G’s counsellors at a wilderness camp he attended this past summer. Because they hike up into the woods for camp, I hadn’t met some of the counsellors (the ones who were waiting mysteriously up at the Hogan every day).

My student, having watched me for two three-hour classes, said I “look and act exactly like [G],” so he “just had to ask.”

This gave me so much hope, because I am – despite my differences or because of them or some mixture thereof – totally fine. I don’t worry about me. But I DO worry about my son. And sometimes people think I over-identify with him, but this is because 1. I get him – profoundly, and, 2. I want him to be okay in the end, as I am.

I always tell people I was almost exactly like G at his age, but female, and people who’ve known me only as an adult don’t believe me, basically because they think G is  “more autistic” than they think I would have been. But I know, and I remember.

Heck, forget being “okay like I am” I would like to see – and do, often, see – G as being okay in different ways. And I would love for G to surpass me in the neurological department and anywhere else. Isn’t any parent glad to see their child out-do them? It seems like that would be a very visceral survival thing. Differences are welcome and celebrated in our family as well! When I see Z shining in her acrobatics class, doing things I can’t even imagine doing, I am beyond proud.

In addition to neurological and physical differences, we need to take into account temporal differences: when people presume that G will stay just as he is, rather than growing as I have and then some, I find it highly botherous.

In any case, G’s strengths and challenges resonate deeply with me, though I always try to respect his separateness and unique personhood. I currently am having an opportunity to distinguish between us in a major capacity, because…

The beginning of Middle School has been a breeze.

…Did I even just write that?

I have spent the last two to twelve years (depending on how you measure it) worrying about Middle School for my son -- at first because Middle School is usually dreadful; later, and in this mode much more assiduously, because of his social challenges.

Seventh grade was a low point in my life. There are a variety of reasons for this, but my social challenges would rank up there near or at the top. I was so painfully shy in my new school that I was unable to say hi to people. I didn’t want to insult them by implying that they knew me. But people took this as my being snobby! And that’s just one example!

Trust me - it was ghastly.

G has had some challenges, to be sure. The adjustment to lockers was…epic, and most of my concerns in Middle School Prayers remain relevant.  But the bottom line is he walks out of school every day waving casually: “Heeeeyy, so-and-so,” “Yo, dudette”…And people…reply?

Is Middle School better than it used to be? How can isolating children in one place at their most antisocial, brutal stage, while combining students from several elementary schools so that they are naturally forced to jockey for position and, therefore, usually, inclined to identify scapegoats, ever be good?

My seventh-grader rates every day an 8 or 9. His innate positivity?...Cluelessness? New and improved brand of Middle School?  I’m surprised – but I’ll take it!

As G headed to school today, his hands were wrapped in a homemade “Mega Master Mega Evolution” Bracelet for his imaginary Pokemon (Figure I).

          Figure I - "Hey Pokemon fans out there: this is [G], the Mega Master!" (Caption courtesy of G)

“[G],” I said gently, “you might want to leave that at home.”

“No way, mom. [Friend A{awkward, sweet guy}] and [Friend B{goofasurus maximus darling boy}]* will like it, and I don’t care about anybody else.”

I am so proud, and relieved beyond measure. Now what should I think about?

Love,

Full Spectrum Mama


* That's, count 'em, two friends. Two friends! 

HEAVEN

Robin Williams - who anecdotally was on the autism spectrum  - was someone I've long seen as an Aspergian role model: someone I could point to for G as a person who was successful on his own terms, perhaps even because of his differences.

I was surprised by how sad and shocking I found his suicide.

I was one of many. A friend posted a recent-ish (2010) interview in the Guardian in which Williams' struggles to connect and succeed socially were striking. The interviewer stopped short of making fun of his accents, obsessions and tangents...but the undertone was perceptible.

Tonight at dinner, G began reading aloud in an exaggerated robot voice. I know people have told him he sounds like a robot. At that moment it hit me: perhaps Williams was using his multiplicity of voices as my son was using his robot voice -- essentially as an alternate or cover-up for his own quirky cadence.

I wish Robin Williams felt accepted and heard just as he was. I hope if he's in heaven it's a wildly, happily neurodiverse (and wildly, happily diverse diverse) place; I hope - if what happens is that we come back - that he comes back in a context that **unconditionally** accepts and celebrates him; I hope if this life was all there was for him that we learn from his pain.

I hope younger generations feel that  their own quirky, heavenly voices are valid, worthwhile, beautiful. Because they are.

Love,
Full Spectrum Mama