FOURTH ANNIVERSARY LISTS I: ADVOCACY

Dear Persons,

Every year, this time of year, I get to indulge in a series of posts that use my most beloved mode of thinking and organizing: LISTS.  The first in the series has always been on ADVOCACY, a subject central to most everything I believe, ponder, and do, as a mother and as a writer.

I’ll be heading into both three-year IEP evaluation meetings and high school transition meetings in a few weeks. Considering the week I have just had, where I

1. noticed on page 27 of a 40 page IEP informational packet that G’s services were being cut from 24 hours per week to 11 for this fall when he starts high school;

2. noticed that G was once again failing several classes and had to engage intensively with him and his teachers and paraprofessionals and case manager* to get him back on track, mostly around executive function matters; and

3. travelled 45 minutes to an away basketball game to watch G play, having attempted a four-tiered system to help him remember his gear (for the record: written list, email, lecture at breakfast, and quiz in car) only to find that he’d forgotten his shorts.**

            ...this was a great time for me to review my advocacy lists and get prepared for what’s to come! As my Meeting Friend can attest, this sort of schedule of minor disastrophes is all too typical for we atypicals, so any time can be a good time to sharpen our advocacy skills.

Here are my previous anniversary posts on advocacy, chock full of tips for success (and some choice “don’ts”) in delightful list form:

Links:

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

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

http://fullspectrummama.blogspot.com/2015/01/third-anniversary-lists-i-advocacy.html

You can also use the “search” function at right to find more posts pertaining to this important subject.

Since I’ve been blogging awhile now, I’ve more and more had the privilege of being asked for advice and support from near and far around advocacy. It’s probably the thing I get the most queries and referrals about, and I am pretty sure that’s because we all get intimidated as well as confused by powerful, sometimes-inflexible, institutional systems that are larger and more complex than us, and full of people who have their own agendas, not to mention the need to become well-versed, quickly, in completely new subjects...All the while dealing as individuals and/or parents with navigating a world that is not always welcoming of difference.

I’ve come up with this handy-dandy three point list to summarize the key aspects of advocacy as I see them, after almost a decade of advocacy:

1. INSIST!

2. PERSIST!

3. EXIST!

...And now for a little elaboration:

1. By INSIST, I mean, to go with what you know is right, whether anti-bullying or pro-services and –adaptations(–accommodations), whether at school, at work, in the larger world...Oftentimes you might not even know what the law or rule or adaptation/accommodation or service or policy is...but you know in your heart that you or your child deserves better. Is your or your child’s neurology, sensory profile, or other difference significantly impacting or impacted by your/their school (or work, or...) experience? Then something needs to change. Part of this step is finding out what can be done – finding a way to make things better – and then INSISTING upon it.

2. By PERSIST, I mean: don’t give up.  Sometimes our efforts at advocacy are flat-out exhausting. Sometimes they don’t help us or our children but they help others down the road (laws, do I have examples of this). If possible, keep trying: sometimes it might just take one more call, or google search, or email to another parent or a friend to push things over the line to full or partial success. Yes, there are a lot of things working against progress (on both smaller and larger scales), but there are good guys out there, and rules and laws that are meant to support equality and fairness...we as individuals can make a difference in the creation of and changing of attitudes and laws, too, but it takes time. PERSIST, dear reader, and find these people and these policies (or be/create them!) and let’s level the playing field!

3. By EXIST, I mean: you are a person! Yes, you! Take care of yourself. I don’t do this. None of us do. But we should. Especially when the world needs MORE from us, and we feel we’ve Nothing left. Sleep. Good, nourishing food. Taking a break sometimes and just reading or going for a walk...Am I ringing a bell here?

Life can sometimes feel like a roller coaster, all the more so when you and/or your child has/have atypical learning styles and/or neurology and/or abilities. When I contacted G’s case manager* to review his grades from the depths of a reasonable yet debilitating funk, she responded on that subject and then, later, sent me this:

I forgot to write it in my last email but...I have been meaning to let you know how amazing [G] was during his Socratic Circle in English class with [teacher]. He related the poem 'Kindness' to his negative experiences in [pre-move, reason-we-moved, elementary] school with bullying and was able to speak to how it made him understand kindness more. He also said that because of this experience he has become a more compassionate person. I was so impressed and moved by his thoughtful input. He was serious and thoughtful. It was just wonderful!

...This email kind of made up for the other disastrophes that week, my point being: take joy/comfort/light where you can...you may need it! Seeking out and really listening to those who recognize/acknowledge/celebrate your or you loved ones’ real gifts are a part of self-care and feeding of the soul.

You know – roller coaster alert - I had mixed feelings when this (very kind and hard-working) case manager* subsequently told me that “[G] could be in an advanced language arts class if not for his issues with organization and writing.” I mean...what’s not happening for him at school that you are not helping him enough with these very issues (learning differences [a.k.a. disabilities – the language we choose is part of advocacy!]) to realize his potential??? Wait...It’s time to advocate...Ciao!

Next Anniversary List: FOURTH ANNIVERSARY LISTS II: ATTACHMENT DISORDERS.

Love,

Full Spectrum Mama

* Ok, “Case manager” makes my son sound like a “case.” Yuck. Note to self: another advocacy goal for when things slow down....??

**The fact that G is on the basketball team is a subject for at least seven or eight future posts, which I will likewise write when the proverbial things slow down...

A SENSORY PROCESSING/NEURODIVERSITY MANIFESTO

My challenges have always been social–neurological–ethical-familial, never academic. My first encounter with academic challenges came when I – in my third and final (and, finally, successful [after a year as a runaway in the East Village]) attempt at high school – landed in a struggling Quaker boarding school that accepted a lot of students with learning differences. The dean there, the man I now call “Dad,” shepherded his motley crew of misfits with infinite love and respect. Students like me who were fleeing troubled, if wealthy, families, were treated just the same as wealthy, healthy, happy-familied students, scholarship students, “learning-disabled” students, all combinations thereof...all students, period. That is to say, equality really happened under his watch.

Until I began raising my son, who happens to have some learning differences, I actually never knew that the official term for such differences is “learning disability.” You see, Dwight, our dean and my “Dad,” referred to students who learned differently from the "average" student as having...wait for it...”learning differences.” And I spent most of my life thinking that this was how everybody thought about the matter.

How much did that linguistic switch mean to those students, my friends, some of whom had felt “less-than” most of their lives because they didn’t process and/or express information in just the same way as everybody else? You can bet it meant a great deal.

G’s early life involved quite a lot of testing, always at the request of his teachers. I began early on to use different terms for many of the labels that were used by professionals for my son and, later, me. I’ve suggested -- whenever the online or in-person conversation comes up -- that we use the phrase “Sensory Processing Differences” in place of “Sensory Processing Disorder,” and people have generally agreed. I do understand that there are contexts in which a disability label may be more effective in managing our differences. However, for the sake of our selves, and our communities, and our children, I contend that the following labels need to be changed, for daily use, if not for services and adaptations (and this is by no means a comprehensive list, just getting this here manifesto going!):

Sensory Processing Disorder              to                     Sensory Processing Differences

Autism Spectrum Disorder                 to                     Autism Spectrum

Accommodations                                to                     Adaptations

Disability                                             to                     Diffability 

Disabled                                              to                     Differently-Abled

Yes, we are different. That doesn’t always make us fundamentally disordered or syndromed.

We are all different. All that difference is not the same. Some of it is MUCH harder, because this world was constructed primarily by people who are embodied and think in “normal” ways. The adaptations some of us may need are framed as “special” “services” because of the way this world is designed – and for whom – NOT BECAUSE THERE IS ANYTHING WRONG WITH US.

Here’s an example I see as very simple and non-loaded: because of my Sensory Processing Differences, when I go into a big box store the artificial scents used in cleaners and scented candles etc. give me an instant migraine. Does this make me defective? In my humble opinion, it makes me more of a canary in a coal mine: Nobody should be breathing those chemicals...and it’s not “disordered” to know so in a very visceral way. 

Another thing about language: it’s okay to ask! There’s been so much discussion, much of it rancorous, around whether or not to use person-first language. How about using the language that the person/people in question prefer/s? I, for one, aim to use language that is respectful and egalitarian. When I speak with others, I am willing to use the language they deem respectful and egalitarian, so long as it does not demean me.

Changing the ways we talk about difference are an important step toward healing this world so that we are all included in the spectrum of equality. Although there is some weight to having “differences,” the word itself also implies variety and, in some important ways, validity. We must continue striving to speak and write in ways that are increasingly fair, as language evolves to better fit reality..

You’ll note I’ve no cute rainbow graphic for this Full Spectrum manifesto. (Please see Figure I.)

                                                    Figure I – No Cute Rainbow Graphic

...because the way we talk about stuff is serious.

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!Want to join in on next month's Sensory Blog Hop? Click here!

An InLinkz Link-up

THE ADDRESSES

The Full Spectrum household is always on the lookout for experiences and resources that are neither inspiration porn nor negative Nellie-ism. We’ve recently had the pleasure of encountering two such items, and wanted to share them with readers:

1. THE ADDRESS

It looks like this documentary is showing on most PBS stations on or around the 15^th of April (I was able to attend the premier here in Vermont). Students, families and educators who experience learning differences such as dyslexia, dysgraphia, executive function challenges and/or ADHD/ADD will see themselves reflected in this documentary in a really beautiful way. So will everybody else! It's just a great piece about persistence and believing in others and ourselves and the amazing results of that magical combination of effort and faith.

The gaze of Burns’ film seems to rest on every individual with equal weight, conferring complete humanity and dignity on each in a way that nicely avoids inspirational clichés. Instead – and  rightly so! – his subject matter is people, learning, together.

2. SECRETARY-GENERAL BAN KI-MOON’S WORLD AUTISM AWARENESS/ACCEPTANCE DAY MESSAGE AT THE UNITED NATIONS

Please take a gander. I’ve read and re-read this simple, magnificent message. The really wonderful thing about Secretary General Ban Ki-moon's approach is his clear recognition that ALL people have inherent value, as well as the capacity to dream and to realize those dreams. While we do need to meet people where they are, there is much to be said for not imposing a priori limits on what people may achieve for ANY reason.

People with disabilities are so often "tolerated," so often expected to have smaller dreams. The Secretary-General explicitly calls the United Nations (and the world in general) to task for just such attitudes and dares to demand more for people with autism (and, by implication, all people with differences from the "norm"). In his vision, “economic constraints” do not trump empowerment – and different abilities do not preclude fulfilling education and gainful employment. Comprehensive inclusion and acceptance are his mighty watchwords.

I see neurodiversity as one of the big civil rights issues of the new millennium. Ken Burns and the Greenwood School students and faculty, along with Ban Ki-moon, are influential and wise agents of progress in this arena.

Love,

Full Spectrum Mama