Third Anniversary Lists I: Advocacy

Over the last few years of navigating institutional systems (schools, camps, after-school activities…), I’ve come to see that advocacy takes many different forms. Here is a list of several types of advocacy and some of the key tools for success in each:

1. The Long-Term Success/Short-Term Failure:

Sometimes, you might fail in your efforts on behalf of your own child…but achieve some success on behalf of future children in a given place or institution. I had one such experience this summer, and it was one of the most painful of my life. I haven’t been up to writing about it yet, and so will just say that I removed and protected G from a discriminatory situation and called the institution out on its very large mistakes in handling the whole situation. It took me a long time to get results, and I had to go to the board because the administration itself was astoundingly unresponsive, but I don’t believe any other family will have to endure what we did at that particular place again.

                KEY TOOLS:

                       a. Perspective

                       b. Long-Term Vision

2. The Learning Experience:

Sometimes past advocacy gives one tools to share with other parents who might not be as experienced in advocacy. Over the last year, I’ve had several people in my area come to me or refer others to me for help with advocacy. It’s not that I am some “expert” – but I do have by now quite a lot of practice. Little things like remembering to scrape the cat hair off your clothes, or arm yourself with some vocabulary, can make a real difference in advocacy.

Another really huge thing is not feeling alone. 

                   KEY TOOLS:

                             a. Time (haha)

                             b. Ability to Listen, Commiserate

                             c. Ability to Share Knowledge / Research / Resources

[>>>EDIT: I apologize for poor list formatting. I am sure many of you can relate to the agony it causes me that the more I try to fix it the worse it gets. Something funky in my blogger template?]

3. The Mixup:

Oftentimes, advocacy becomes necessary because a situation is misunderstood. People, especially children, perhaps most especially those with differences - such as my autistic son, G - may have a hard time articulating what they are feeling or what they have experienced, especially under pressure and/or with authority figures.

Mixups may necessitate Social AND/OR Academic Advocacy.

Here is something in this vein that happened this fall: G got suspended from his school-sponsored after-school activity for punching two boys. It seemed to the school like he was the “bad guy” in the interaction, in both the phone call and the serious letter I received.

But I know my son. He’d NEVER been violent before. So I asked him some key questions, you know, starting with a simple “What happened?” It emerged that these two boys had been teasing him for the last few weeks and he’d finally lost it at the moment when one of the boys was writing “[G] is a blundering idiot” on the blackboard.

I remembered that he’d told me some kids were teasing him, but hadn’t felt it warranted a talk with the teacher since G hadn’t seemed to be very upset and I assumed he would handle it himself with the IGNORE method we often discuss…Over the week in question, the teasing had crossed the line over into bullying. The leader of this after school activity – who, it turned out, was a high school student – had clearly been in over his head with this bunch of zany boys playing Pathfinders (for my fellow old fogies, that’s basically the new version of Dungeons & Dragons).

SO, what I did: I wrote the head of the program as well as the school principal and vice-principal explaining my child’s perspective and giving them some context. I acknowledged that hitting is never, ever acceptable and assured them that I supported their stance on violence and would speak firmly with G. But I also I asked that the other children be spoken to as well, and possibly suspended from that same activity for their bullying behavior. I asked that they ALL recognize that this was not a situation where a violent kid bullied others, but one in which a non-violent kid was pushed too far for too long. I think they got it, but only after my G had been labeled as violent and suspended from the program, which did have some impact on him.  However, with Mixups, there’s always that initial…Mixup.

Here’s a different example: G was failing math, his best subject, this fall. I worked with the teacher and with G and we were able to figure out that he was doing his assignments but not turning them in.  We adapted his homework assignment protocol to include turning things in immediately upon completion rather than waiting until the next class. Mixups usually have solutions…if people will speak out – and listen!

                   KEY TOOLS:

                            Detective Work:

                                                       a. Finding Out What Really Happened via  

                                                            Asking      and      Listening,

                                                        and then 
                                                       b. Finding Out What Can Be Done,

        and then 
       c. sometimes Fighting for What Can Be Done to

                                                       d.  Actually BE Done.

4. The Temporary Fail:

Sometimes, advocacy fails, at least initially. We do have resources when this happens! There are lawyers and organizations that specialize in special needs advocacy, but sometimes other parents or people who share your or your child’s difference can be really great at figuring out options.

                   KEY TOOLS:

                            a.  (Internet & other) Research

                            b. Legal Aid Organizations
                            c. Community (including online! For many of us, that’s the

                                           most viable option…)
                            d. Local and National Advocacy Organizations

                            e. Word of Mouth

5. Success!

I’ve written in the “Process, Represent, Toot” link below about my fight to keep G’s IEP in the fifth grade. It was a doozy – but those of us who were on the kid’s team won. In my experience, the most common and daunting obstacles to students receiving the help they need are budgetary. Schools are required to “provide a free and appropriate public education” to all students. Those who don’t fit the cookie-cutter mold of the average student (and I would argue that percentage is very high) are harder to educate because they require Individualized Education, which is more costly! A formal IEP (Individualized Education Plan) obviously costs districts much more than warehousing “average,” “normal” students with one-size-fits-all teaching.  So, naturally, they want to – or HAVE TO - minimize the proportion of students served thereby.

That’s not to say you won’t encounter people who want the best for a given student. I have personally seen a teacher put his job on the line for my son. It’s just that this system makes it more likely you will have to advocate for your child or yourself. Start by being there -- as often as it takes. In addition:

                                     KEY TOOLS:

                                               a. Knowledge

           b. Confidence (Fake it if you need to! But remember: YOU

are the EXPERT on your child, the one who knows most intimately what he or she needs to succeed. 

c. Persistence -- Keep at It         
d. If possible: Enlist Other People

6. Self-Advocacy:

Things ARE changing. Not fast enough! These days, we ourselves and our children are learning to know ourselves as equal, to know our own individual strengths and weaknesses, our quirks, gifts, and challenges…As knowledge around neurodiversity spreads, there’s more respect and acceptance for all.

I recently had a long talk with one of my students whose daughter sounds like she has sensory processing differences. I was telling this mother how it felt to be spectrum-y growing up in a world with ZERO awareness and how NOW her daughter will have so much more understanding and can learn to advocate for herself...

Just yesterday, I said to a friend, perfectly casually, nicely, “My brain is full and I can’t talk to you anymore.” She totally got it. That never would have happened ten years ago. Those of us in neurodiverse communities are openly telling our stories more and more; we are feeling increasingly comfortable advocating for sensory adaptations, executive function aids, acceptance of tics, flaps and awkwardnesses…ADVOCATING for What We Need.

Of course discrimination is still an issue, as are many aspects of living with disabilities and differences. With sharing our voices and teaching our children and ourselves how to Self-Advocate we can continue to grow a world where acceptance and equality prevail.

                     KEY TOOLS:

                             a. Self-Awareness

                             b. Willingness to Grow

                             c. Conviction

                             d. Ideas for Adapatation(s) (I prefer the word “adaptations”

to “accommodations,” which sounds to me like somebody is doing somebody a favor)

Here, gleaned from commonalities among the above genres of advocacy, are what I see as  THREE MAIN TOOLS FOR ADVOCACY:

1.      HELP YOURSELF (whether to help yourself or someone else) – Do the research so you know what’s legal, appropriate and possible.

2.      FIND and IDENTIFY ALLIES -- and ASK FOR HELP.

3.      KEEP TRYING – Don’t give up. Or, at least, if you do need to give up, don’t give up forever. Take a break! Build your strength and hope and, when you are ready, resume advocacy.  

Good luck, my friends!

Love,

Full Spectrum Mama

P.S. For more posts on Advocacy, please check out:

           

            http://fullspectrummama.blogspot.com/2013/01/first-anniversary-lists-i-advocacy.html

http://fullspectrummama.blogspot.com/2012/12/process-represent-toot.html

            http://fullspectrummama.blogspot.com/2014/01/second-anniversary-lists-i-advocacy.html

LEARNING TO “FLY” – A NEURO-MOMENT

An October 8^th NEW YORK TIMES “Profiles in Science” piece on Michael Dickinson and fruit flies (Drosophila melanogaster) completely (technical term alert) blew my mind. Although fruit flies, obviously, have very small brains, the flexibility and mutability of their neurons result in a per-neuron superior functionality than is found in humans. Because “the presence of different chemicals called neuromodulators in the fly brain can change how a given group of neurons acts at different times” (http://www.nytimes.com/2013/10/08/science/focusing-on-fruit-flies-curiosity-takes-flight.html?pagewanted=all&_r=0), fruit flies have an astounding capacity for (relatively speaking, of course) adaptation and development.

I was inspired by this article to do a little research on neuromodulators in humans and it turns out this is a pretty new concept in neuroscience, one which looks very promising for human development in the long term.  Neuromodulators include serotonin and dopamine, with which scientists have been experimenting for decades with somewhat limited success; however, our knowledge of how neuromodulators influence and transform brain activity is now expanding exponentially.

Dickinson’s work will contribute to this understanding, as well as to our respect for the complexity and genius of the lowly creatures he studies. The wonders of flying, he suggests, rest chiefly in the brain. Just as the brain flexibility of fruit flies enables flight in an ever-changing variety of circumstances, so might the relatively less-flexible human brain be influenced to adapt and develop -- if we can more effectively identify and utilize neuromodulatory mechanisms. 

There’s a lot of talk about neuroplasticity around autism, hinting at enhanced brain-healing capacity in spectrum-y brains, but I am encouraged by the potential for healing, among other things, brain traumas (such as are found in attachment disorders and PTSD) as well. These neurological differences – autism, attachment disorders and PTSD - are all significant factors in our Full Spectrum household. (Please stay tuned for an upcoming post on HEALING in a Full Spectrum!)

Apart from the NEW YORK TIMES’ “Science” section, just a quick dabble shows the world of neuroscience is all abuzz (and awiggle) in popular culture.

In VOGUE, Rebecca Johnson’s “New Frontier” (October 2013) profiles the neuroscientist Cori Bargmann and her work with a tiny worm (the nemotode C. elegans) that has 302 neurons (humans have 10 billion). Bargmann’s work sketches filaments of hope for brain-science progress between increasing computer capacities, advances in electrodes for the measurement of nerve cells, and improved microfabrication…She sees psychiatric medicine as just one of the more promising subfields among the many in which neuroscientific developments will benefit humanity.

“Now,” Bargmann marvels in VOGUE, “we are not just watching the flow of information [via neurons] but trying to change it.”

One part scary, one part breathtakingly hopeful, eh?

THE NEW YORKER recently published “Mindless: The new neuro-skeptics,” by Adam Gopnik, about the mind-brain divisions and debunkings posited in some circles (September 9, 2013). Gopnik likens the “brain” camp, with its currently culturally dominant emphasis on neuroscience, to Mr. Spock (now you know I love a good Star Trek reference, plus Spock was my pretend-fiancé when I was little). The “mind” camp, which sometimes compares neuroscience to the now thoroughly discredited early-nineteenth-century “science” of phrenology (or mapping the mind through the shape of the skull), he frames as akin to Captain Kirk. He points to the rich literature and inquiry on both “teams” and concludes that both responsibility and possibility lie in the whole package – mind-plus-brain (plus environment), all working together in a way so “complex and contingent” as to boggle the, ahem, mind.

Complexity notwithstanding, evolution of many sorts is ongoing, whether scientific, philosophical, even personal: “We learn and shape our neurology as much as we inherit it,” says Gopnik. ”Our selves shape our brains at least as much as our brains our selves.”

What he said.

More neuroscience-boom proof: the Nobel Prize in Physiology or Medicine for 2013 went to some neuroscience dudes…And Obama recently launched the BRAIN (Brain Research Through Advancing Innovative Neurotechnologies) project, an unprecedented neuroscience initiative (in fact, Cori Bargmann will co-chair this endeavor).

But then, working on the mind is nothing new.

From ancient philosophers to contemporary mystics, wise people have always known it is possible to train (ideally) and re-train (less-ideally, but more commonly) the mind. From Plato’s (and his student, Aristotle’s) thoughts on ideal environments and habits for exercising the virtues, to the Buddha’s writings on practices to calm and discipline the mind and actions; from Confucius on good habits and self-discipline in harmony (the Tao), to Teresa of Avila on practicing devotions of imagination and contemplation; from Thomas Merton on spiritual disciplines as the way to liberation,* to Starhawk on “psychological techniques and personal disciplines” as tools for transformation;** and on and on (I’ve left so many out in the interest of brevity!!)…all the great traditions offer tools for behavioral, mental, emotional, and – sometimes – spiritual development of the mind.

Now we are just beginning to enter this heretofore sci-fi realm of attaining real knowledge about the brain itself. It’s exciting.

Disclaimer: Full Spectrum Mama loves her children and self just as they are, and is NOT looking for a “cure” for Asperger’s!!!! ***

But wouldn’t it be great to have the option of tweaking our own neurology in positive ways? Even if we have no desire whatsoever to change, this knowledge itself will be awe-inspiring: we have the potential to understand, if not emulate, what Dickinson calls the “great success stories” borne of adaptable, flexible (fruitfly) neurology.

Full Spectrum Mama is certainly gung ho about adding new tools to our quests for health and healing, especially in terms of reducing suffering.  To wit, my neurology has always been sensitive and prone to migraines, but with age and/or a major concussion a few years back and/or something else (?) my migraines and PTSD triggers have increased dramatically over the years. I’d try just about anything – meditation to neuromodulation - to soothe these neurological responses. Just – don’t you touch my Special Interests!

I guess that last is the key, though.

 Bargmann bemoans the “dismal state” of today’s psychiatric medicines, and the field of neuromodulators remains in its infancy. All the beautiful possibilities mentioned in these articles are still just ideas. Early on, would tweaking my neurology result in unintended consequences such as losing my precious Special Interests or other things about me that I treasure or see as integral to who I am? Furthermore, the idea of such tools being used against our will or unbeknownst to us is unsettling, at best. “Neuromodulism” (I just made that up) could become “the new eugenics.” Ew.

 With all these caveats, I am still intrigued by the potential for human beings to develop and adapt more effectively. Reducing certain kinds of obstacles to flourishing, such as unwanted manifestations of mental illness, physiological trauma and physical pain, will help us “fly” higher – and with more flexibility.

Now come on, Homo sapiens! If D. melanogaster can do it, we can too!

Love,

Full Spectrum Mama

* Admittedly, Merton’s deeply entwined Catholicism and Zen Buddhism were somewhat controversial, but FSM always errs on the side of acceptance.

** http://www.starhawk.org/activism/trainer-resources/nonviolencework.html

*** Speaking of Asperger’s: between you and me and the fencepost, take a look at the picture of Dickinson and then read his words and ask yourself who’s got Asperger’s all up in that article.