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

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"MOTHER APPEARS DISHEVELED"

Dear Persons,

I was listening to NPR not long ago and ended up sobbing in the car. Again. The segment that got me this time was on voting rights (read it, and possibly weep, here), and how in many states persons who have appointed guardians do not have the right to vote. Whether to apply for guardianship of my son is probably the question I struggle most with on a day to day basis (followed closely by even more terrifying questions about what will happen to him when I am gone). The thought of my brilliant, politically-engaged son being unable to vote was one more tally in the non-guardianship column. I want to always err on the side of presuming competence, yet I always want my child to be able to, you know, live...sometimes despite himself.

I mention this not because this matter is resolved, but to point out that for parents with atypical children, and for people of difference in general, the world out there (your basic radio show, and so on) can be a bit of a minefield.

I have many friends – who I still speak to! – who like to say “Oh, it’s hard being the parent of any kid.” Sure, I will give you that. And I will gladly agree we most of us love our kids the same agonizing, rapturous, heart-expanding amount. But I am not Full Spectrum Mama for nothing: I have one typically-developing child and one who is developmentally and neurologically atypical and I can assure you it is not the same kind of hard! When your child develops differently there may be taken-for-granted, essential life skills that he or she may develop late...or never.

The idea that G will “grow out of it” – whatever “it” is – is thus often meaningless and certainly not reassuring.  For example, all his life G – despite assiduous and almost-constant attempts on my part to change this - has used his clothing as a combination napkin/tablecloth while eating. And that’s when he notices he has food on his face or hands...which he usually doesn’t. In the scheme of things, I’d like to think of this as minor – I mean, G is extraordinarily KIND and FUNNY and SMART – yet how will this be viewed by a potential employer? Or partner? (And no, I do not mean typical sloppiness, my “all kids have challenges/all boys are slobs” friends.)

Or perhaps your child is or you are (as am I) at the other end of the noticing/reacting spectrum and barely able to function because of obsessive compulsive (OCD) needs and/or sensory overload from crumbs and the like?

Maybe G’s table manners will improve someday. Maybe someday I will be able to ignore a single crumb on my finger. But sensory processing differences (SPD) and other neurological differences are often integral to who we are, part of our very biology. Neurodiverse and differently-abled persons may develop neurological, practical, and/or emotional strategies to function in a world that was not designed for them – and sometimes doesn’t make sense - but there is much we will never “grow out” of...

My conservative yet highly clinical estimate is that I worry about G a million, billion, gazillion times more than Z, my typically-developing, typically-abled daughter, even though she has had her issues as all children do...

I usually write more from the perspective of a child advocate, or in efforts to spread awareness and acceptance of difference. This time, I wanted to write about what the parents I know who have children with extraordinary challenges feel like a lot of the time, both to acknowledge and honor them (us) and to spread awareness on this front.

I am not complaining – my child brings me extraordinary wonder and joy every minute of every day – I am explaining.

Those of us with who are different, or have children with differences – or both! – have to navigate more-complicated, often “inappropriate*” (to us!) environments and interactions – environments and interactions that may feel overwhelming, cruel, arbitrary, opaque -- almost all the time. In a very real sense, the “problem” is the world, not our kids/us.

My Meeting Friend became my dearest and most-cherished support-network-of-one when mutual friends who knew our children kept suggesting we connect, and then our paths kept crossing en route to and from Meetings, therapies, etc. etc. My Meeting Friend was once at a Meeting – of which one has exponentially more with an atypical child (and yes I know this from personal Full Spectrum experience) – and glanced over at what one of the “professionals” there to evaluate and assess her son had written on a pad and read, “Mother appears disheveled.”

Now this is a mother who has willingly and bravely made changes and sacrifices for her child beyond what most could even imagine. That very day alone I am positive she had already cooked several different healthy breakfasts taking all individual food allergies into account, carefully planned out ways for both of her children to have their own kinds of successes (including – egads! – athletic successes!!!!) and learning experiences, gone to great lengths to ensure social interactions and a beneficial sensory diet for her son, written several emails regarding grades, social situations, IEP, 504,etc.,  made sure her other child felt “just as important,” oh - and worked at her job...** With a smile on her face.

I am impressed she even had clothes on after what she has been through. But there that note was -- amidst, I am sure, other stuff (such as “EXCELLENT parenting!” and “Kid is PERFECT, just a WEENSY bit unsuited to the average boring old, sensory-/social-nightmare classroom”)  --  ...”Mother appears disheveled.”

Figure I – Disheveled Mother

...Ya think? And I wasn’t there at that particular Meeting, but I do know that she has had the grace to laugh about it ever since.

My friends, do you appear disheveled or know someone who does? From crying in the car, maybe? Are you disheveled on the inside even if you appear “heveled” on the outside? You are in good company.

Much Love,

Full Spectrum Mama

* “Inappropriate” is such a trigger word for many on the spectrum. There are a lot of “normal” things we find “inappropriate,” believe me (and there is no monolithic “we” in either neurodiverse or neurotypical contexts!). Nonetheless our children are often told, especially in school, that X, Y, or Z is “inappropriate”...One hopes that some consideration is given to the possibility that people who perceive and process differently may have different standards – and not always assume that neurotypical standards are the correct and appropriate ones. 

** How do I know these things? Because I know my Meeting Friend. But also because I and most other parents I know who have children with differences do these types of things Every Day. I just wrote a letter to G’s teachers and “learning specialist” while I wrote this footnote.

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

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

Clarification Interlude

This morning I ran into a colleague while having an oil change. I told her I was “pretty excited” about something, I don’t even remember what, because I was just chewing the fat, mmmkay?

“Well, obviously you’re a pretty hyped up person,” she informed me.

And here all these maniacally stressful years I’d thought my hard-won (let’s not call it fake, hey?) positive attitude was coming across as, I dunno, mellow cheer.

Also, my Very Strict Writing Group Overlords have cautioned me that lately Full Spectrum Mama has been sounding a bit “breathless” and overly full of “We Can Do This” attitude, leading to an overall impression that I “have things figured out” and am a “Good Sport.”  Knowing me as they do, they dared to question this state of affairs.

I had a chance to ponder their impressions the evening after our last meeting, as my car overheated on the highway and the Full Spectrum Family’s 3 hour trip turned into 6-plus hours with a special bonus of three roadside diarrhea incidents and one potential car-repair-bill-induced panic attack.

The only Good Sporty part of that whole story was when we finally got to the convenience store and I let the kids pick ANY donut, even though it was well past Dinner Time.

I’m horrified by the possibility of a random reader falling upon this blog and feeling alienated and, possibly, inferior because I come across as a Pollyanna of competence, wisdom and equanimity. Because, do I really have things figured out? No.

So I’d like to clarify.

The following pie chart roughly illustrates a more realistic model of Full Spectrum coping techniques:

Love,

Full Spectrum Mama