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!

17 comments:

  1. You brought me to tears today. Progress, acceptance... I struggle with these daily. I try so hard to help my kids (at home, with services, etc.) but sometimes I think I try too hard. I need to let them be. And then eventually I start all over again. Progress, acceptance... trying too hard, letting go... progress, acceptance... and so on. Thank you for your perspective, as always.

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    1. Co-tears.
      The cycle is brutal partly because we mean so well in BOTH sections and they sometimes feel contradictory...
      Thanks and Love,
      FSM

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  2. Wow! There is so much here...so many layers to consider and ponder...

    We do certainly throw the word "progress" around freely, don't we? I, like you, would love to see my son progress in self-advocacy and I also feel my child is making much more progress than me.

    "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."- YES! This is me also. Finding the balance between supporting and enabling is tough. Let me know when you find the magic formula for that one!

    And finally, "Teaching people is not his job. Being the best G is his job!" The phrase "my child is not a teachable moment" has been rolling around in my mind this past week. This speaks to that thought. I want to advocate for acceptance and will do so to whatever extent that I can- but that is not his role nor his function. Being the awesome kid that he is- that's his job.

    As always- brilliant and insightful. Can't wait til next month!

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    1. Awwwwwwwwww- thanks so much, @Jessica.
      I think my son was really the one who taught me what his job is, by refusing to buy into my hype when I was pushing more in the "fitting in" department of progress...
      You let me know if you find the magic formula too!!!
      Love,
      FSM

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  3. I loved this post, and this part: "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." really got me. That is where we are with my younger son. It is SO much easier to just do it. And he knows that, I thing. The other day we had him vacuum because he made a huge mess, just to be mischievous. He was plugging his ears and trying to juggle that vacuum. Then I put the noise canceling headphones on him and he relaxed, instantly. And, he smiled. So sweet and I thought, "WOW!" How much have we deprived him of by doing for him? He may love vacuuming--something that kills me physically.And he did a GREAT job.

    And when I read this: "My job, as his mother, is to help him become the most content, competent person he can be, while respecting his unique wonderfulness. " my first thought is that you ARE growing and "progressing" as a mom, as a mom with your kids--alongside your kids. I'd bet that if you call your progress growing as a parent, that you would have a lot more "progress" to see than you think, it just looks a little different as adults. But no-less to be celebrated :)

    Great thoughtful post!


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    1. You just got me big time, @Merri: would it be such a big deal for us to conceive of "progress" in the way you frame it? What a beautiful insight.
      Thanks and love, and thinking about that vacuuming story...how much damage could he do? Haha.
      FSM

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  4. I struggle on this front.... challenging my son to work past his ADD, Dyslexia as well as his sensory issues, while also encouraging him to embrace who he is.

    Jennifer @ The Jenny Evolution

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    1. I think this, along with the adulthood terrors, is the hardest thing. Oh, no, wait, also the bullying, that's probably the hardest thing...But after that!
      We will keep trying!!!!!
      Love,
      FSM {Jenny}

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  5. Progress is progress, no matter how small!

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    1. Sounds like dr. Seuss, which, um, sounds like US ;)
      Thanks and love,
      FSM

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  6. Can you read the kanji on the blackboard?
    Can you read that kid's imagination?
    -Lost One's Weeping, Kagamine Rin

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  7. Have you heard a song called Lost One's Weeping by Kagamine Rin and Kagamine Len? The song questions the importance of academic success.
    "Can you read the kanji on the blackboard?
    Can you read that kid's imagination"-Lost One's Weepine, Kagamine Rin/Len (Translated from Japanese)

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    1. Incredible. Thank you for this quote and the explanation.
      SO, sooo much is, yes, lost when we try to limit human beings to some narrow notion of "success."
      Thanks and love,
      FSM

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    2. Correction: The song is only by Rin. Len had no part in it.

      Delete

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