OUR NEW BOOK IS OUT!!!

 

PLEASE READ AND REVIEW!

Review links: 

Barnes and Noble

Amazon

Goodreads

THANKS AND LOVE,

FSM

CH-CH-CH-CH-CHANGES: A NEURO-IMMUNO-MOMENT

Dear Persons,

As I tell my students, there’s been a shift in the world of philosophy over the last few decades toward context and the particular. Philosophers and ethicists used to search for “the one answer;” now they tend to embrace a range of possibility in ethically/philosophically "appropriate" responses. Similarly, in the larger world, the presence and testimony of neurodiverse individuals and families have made room for a range of what is “normal,” as well as a diverse array of approaches to difference. Since SPD (sensory processing differences) and autism are a huge part of my family’s life, I’m curious about these shifts.

I’ve been seeing a lot in the press lately around the immunology and neurology of difference (my favorite article, which happens to be about schizophrenia - by the brilliant Siddhartha Mukherjee -  is here); I’ve also been seeing a nuanced view of “fixing” people that acknowledges the subtle, sometimes tragic losses our “fixing” can cause, along with potential positives (this slayed me [for the record: I was surprised that John Elder Robison chose this treatment, but that’s another post]).

I’ve been asking myself: if context and situation vary so enormously, how could there possibly be one answer to the sorts of questions we navigate when we and/or our loved one(s) are neurodiverse? Respectful disagreement, while not being super-well modeled by U.S. Politicians, IS possible! 

I’ll use the word “change” to represent a range of possibility, from “cure” to “heal” to “progress,” but want to be clear that I stand pretty firmly in the acceptance-as-is camp. However, I respect the rights of others to want and advocate for something different than what I want and advocate for...!

With all the current research into our immune and neurological systems, both of which are related to neurodiversity (as well as other differences), we are faced almost inevitably with the following questions:

Do you want to change?
Do you want your child to change?

Does your child want to change? (And, for non-verbal children and adults, how do we determine this?)

Or do you want society, community, family, institutions, and/or context to change?

Or BOTH?

We have limited time and energy (sometimes extremely limited!): where will you choose to put your energy? 

Into yourself? Your child(ren)? Community advocacy? General advocacy? Change? Acceptance? BOTH?

There are limited institutional, state, federal, international, and non-governmental/not-for-profit resources: Where do you think these resources should go? 

To funding a search for a cure? A cure for what (autism, SPD, ADHD, difference...?)? Therapies (Physical? Physiological? Psychological? Neurological? Immunological?)? Resources to support families? Resources for schools and other institutions? Advocacy for change in the direction of inclusion?

(And...Finally...Do you even have time to think about all this stuff?)

Figure I – Spectrum of “Appropriate” Possible Answers to Each Question

  

As I also say in my classes, complex questions may naturally elicit answers that are complex, even seemingly contradictory or inconsistent. Our immune systems and our neurologies are intricately intertwined with our ways of being ourselves. We have many, many layers in our approaches to and feelings about who we are – and who we want to be.

We all want to be healthy, function at our best, be accepted; yet these things can manifest very differently, and mean widely different things to different people. 

Acceptance and change can conflict, coexist, contradict, and/or complement each other...

The respect we offer individuals, presuming competence and sharing autonomy, demands that we honor the multifaceted array of possible answers in a multitude of contexts.

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

Third Anniversary Lists III: Choosing your Battles

Does anybody else obsess over self-driven cars?

One of the battles I am most loath to contemplate is that with my son over driving.  As focused as G can be, he may be easily distracted, especially in unpredictable environments -- and his judgment and sense are “still developing.”  If those self-driven cars could just hurry up and become available and affordable, I could sidestep the whole thing!

There are a couple of other battles we are fighting here and now, though, reducing the free time I have to think about future technological developments. I do this particular yearly list because it’s a handy format to share some insights from the last year’s struggles. While there have been a number of individuals and institutions that the Full Spectrums might’ve considered deserving of a nice smack with the hateball bat this year, I am going to stick with the positive, dedicating this post as usual to stuff you can try at home.

The critical differences between my children – my son is autistic, socially-awkward and very open-hearted; my daughter was adopted from china and has an attachment disorder; she is very savvy, and kind of a tough cookie – necessitate a lot of soul-searching in terms of how to best parent each/both. Parenting these two very distinct persons may (best case scenario) help me see what sorts of parenting strategies might work with a variety of children.

Here are some battle-choosing tips for my FULL spectrum:

1.      BOTH children benefit from Tackling One Task or Trait at a Time. I have found it’s better to monitor/learn something specific like “making the bed” over a more broad category such as “neatness.” The way that I CHOOSE which tasks or traits are addressed rests on which skills and traits will be most necessary to their lives as they grow up. With G, my choices tend toward practical skills and self-disciplines that will allow him to live independently; with Z, I tend to focus on skills and traits that encourage her to “grow the good,” to feel safe and secure enough to be kind and generous.

2.      (Try to) Be Consistent and Patient. Once you’ve chosen a battle, stick with it. It can take a loooooong time for habits to become ingrained. I am still working with G on “making bed,” while with Z it took a few days. Consistency is key – and a challenge to maintain on top of everything else…

If you are like me, you get t-i-r-e-d. Sometimes you may need to take a break from enforcement and get back to it once you’ve recharged. You’ll know pretty quickly whether you’ve been at it long enough for something to become a true habit when you start that break.

3.      Find the Right Reward. Z’s pretty easy: food. For a long time I was using “common sense points” for G and “goodness points’ for Z, and when they reached a certain number they got to choose a reward. This worked really well with G -- so well that he chose to stop doing it “because I have so much common sense now.” But it was, I think, a little too vague for Z, who never seemed to get above 10, anyway. So now we have malted milk balls that Z gets when she listens in school:  Specific Goal (see 1) and the Right Reward (3). For G, gum and screen time are enticing rewards; he has a lot of Specifics to work on, though and I haven’t been as Consistent as I should…

(Oh, I’m sorry…was that new-mama-ME who vowed she would “never bribe her kids”??? Welcome to reality, my old friend.)

4.      Assuming you’ve truly chosen worthwhile battles, you’ll want to eventually find ways to make the battles you are trying to choose for your kids become Their Own. Transfer control to them eventually so that you won’t have to do whatever it is (making bed) or remind them of it (be kind!) FOREVER.

I see autonomy as an ultimate goal and challenge for G, since his neurology can make basic daily tasks a struggle (mostly in terms of simply remembering to do them).  So a big goal and challenge for me, then, is to help him see why he should and how he can take on practical skills.  

Helping Z develop her superego (that part of the self that has a conscience and promotes pro-social, ethical behavior), so that she will be kind and honest when I am not monitoring her, is also an “ongoing process.”

5.      This last battle is not a FULL spectrum issue, as Z is a voracious and completely un-picky eater. But G, as with many people on the spectrum and/or with sensory processing differences, would prefer to “live” on a diet consisting entirely of white, sweet, bland food.

So, here are the Food Battles We Choose:

a.       The “One ‘No’ Rule:” G is allowed to refuse one item at each meal.

Because he is by far the pickiest eater in the house, and the rest of us tend to eat all sorts of things, this seems reasonable.  On a given night, I may find myself picking spicy greens out of the mesclun, mushrooms out of the rice, eggplant out of the relish… before even presenting Himself with His dinner. Egg-zaust-ing. Now I allow one choice of a food that will not be on his plate; the rest is up to him as below:

b.      The “One Bite Rule” is the perfect corollary to 5.a. Sometimes it means at the very least that all the remaining foods offered will be tried, however reluctantly…Sometimes it actually leads to a changed opinion: one time, I made G try the romanesco cauliflower which had been his expected “no” choice and then, having decided he liked that better than expected, he chose not to eat the cooked bok choy.

Fascinating, I know, but the “One Bite Rule” does sometimes create such mini-revelations.

Coming up, the next Sensory Blog Hop plus… what you have all been waiting for!…the most popular, putrid post of the year! : THE COMPLAINT DEPARTMENT! FSM has been a smidge behind the ball these last few weeks and is very much still accepting last minute complaints at jineffable@gmail.com.

Love,

Full Spectrum Mama