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

OH! THE ____ SCHOOL?

Pardner is a chef and recently texted me during dinner service about a nice family that was at the restaurant. He said he’d been observing them, from his open kitchen, and he thought the teenage son was “very lovable” and “probably had asperger’s.” He mentioned that the kid had told the server that he wanted to come back and visit the chef after dinner, and was hoping that was okay with Chef. Pardner being a cheery and accommodating fellow, it certainly was.

An hour or so later, Pardner texted me again. This time he told me that the father of the teenager had turned out to be “a jerk.” When he came home (late – argh), he told me more about what had happened. Apparently, this Dad hadn’t let his son visit with Chef, and had been short with the server. Somehow over the course of the meal, his personality had changed.

I was really surprised, but I was also sleepy.

In the morning, I asked for more detail. It turns out that the server, a well-meaning and sweet person who has some experience with children, had engaged this family in friendly conversation. When she found out they were not local, she’d asked why they were in the area and they’d said they were looking at schools.

“Oh!” she said. “The ____ School?”

The ___ School is a school for children with special needs.

“Well, there you go,” I said, feeling a little sick to my stomach for that family.

“What?” retorted Pardner, completely dumbfounded and baffled.

“You don’t even get it, do you?” I replied, nicely.

Shut the Front Door.

Imagine you are a family. Maybe you have a child who is “different”…but you want that child to have every opportunity. So you take them out to a fancy restaurant. Part of you, hypothetically, is praying that your child is not disruptive in any way. Another part of you feels that your child has as much right to be in a restaurant as anyone else. Part of you, again, hypothetically speaking, celebrates your child EXACTLY AS HE OR SHE IS; another part (probably much smaller but still there, okay?) desperately wants your child to fit in, to be accepted, to be able to “pass.”

So you are eating your dinner. Maybe it’s been an intense day with interviews, maybe with wondering if your child is “too different” or “less different” than other kids at the potential school. Maybe you just want to eat some ding dang dinner in peace. And your chipper, cute, 20-something server just – out of the blue, basically; trying to be “compassionate,” or “knowledgeable,” or whatever  - busts out with her “understanding” information.

Because, obviously, your child needs to go to the “Special” school, right????

“Really?” Pardner asked, after I explained this to him through my tears. I felt so bad for that poor father, and the kid, who’d been pigeonholed, albeit by someone with nothing but good intentions. “Hmm. He didn’t leave a very good tip.”

“See?” That was the final proof for me. Even though that server had done her best vis-à-vis her actual job, and probably deserved the great tip she usually would’ve gotten, her presumption had not served anybody well.

Love,

Full Spectrum Mama



P.S. The ____ School is a fantabulous school. That's not the point.

P.P.S. Please also see "ON WRITING" for an update on this post!