Tuesday, May 8, 2018

GOODBYE, NAMEY OLD NAME THE NAME

Dear Persons,
There’s something I’ve been struggling with for some time now.

To make it less loaded as a puzzle, let me start with a lighthearted example. Let’s say there’s this thing we call a chipmunk. We use that name to refer to a particular type of creature, a small, orange-y, striped, cute one; and to distinguish it from the larger, less-cute (to some), similar-but-usually-grey animal we call the squirrel, not to mention any number of other rodents and animals. It’s useful to have a shared name for this distinct creature. And we may even have other names for individual chipmunks, such as “Little Jerk,”  and “Garden *&%#$.” But we always know what chipmunks are — and what they are not

But what if we found out that the very word chipmunk was problematic? What if chipmunk was another name for, Oh, I don’t know, a possible Nazi-sympathizer

Besides it being a commonly-understood term — and an erstwhile diagnosis/label (one no longer widely accepted in the professional/medical/neurological sphere) — why do we use the word Asperger? I had to take a hard look at my own usage and I realized that — although I do avoid the term “high functioning autism” (or HFA), because I think it has questionable implications and is implicitly comparative of human beings — I have typically used Asperger somewhat in the same way. That is, I have unconsciously used this term to make it clear that my son is the kind of autistic person who has special interests and above-average intelligence, etc. That was wrong of me — as continuing to use this term would be. 

At the same time, I also used the term to describe him because the general usage/understanding of this term really fits G as he is: highly verbal, quirky, not so great with social cues…But that’s not going to fly anymore. 

Autistic and on the autism spectrum seem fine to me, but a little too defining/labeling for day-to-day use (I do not like autism spectrum disorder as I do not frame different brains as inherently disordered!). From now on, I am going to use the term neurodiverse. Yes, it’s slightly meaningless (a la “tasty” — oooh, it has a taste!), but it neither refers to a kind of human being by the name of a criminal nor distinguishes between neurotypically devised “levels” of “functioning.”


Thanks and love,
Full Spectrum Mama


P.S. I completely understand and honor those individuals and organizations who’ve chosen to stay with this name, or who chose it prior to knowing about the complex history behind it. This is my choice, for myself. 


 
Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!


Tuesday, April 17, 2018

MIDDLE SCHOOL ORIENTATION -- THEN AND NOW

Dear Persons,


We remember our most terrifying life experiences all too well, right? 

My first Middle School Orientation as a parent was one such moment for me. 

My son, “G,” is now 16. He is a super smart, autistic, kindhearted 10th grader. 

My daughter, “Z,” is 12. She is allistic, very, very clever, and has some residual attachment-disordered behavioral traits that actually serve her well in her brutal 6th grade milieu. 

Four years ago, I attended G’s Middle School orientation. This spring, I attended Z’s. The differences between the two experiences were remarkable: 

Then: Abject terror for my child.
Now: Mild concern for other kids since, how shall I say this, Z and her friends are “still developing this skill” of the skill of empathy. 

Then: Both children sitting with me. I'm so tense that my little guy — not the most observant kid on earth — is sensing my alarm, and my little gal — showing her rare and dear soft side — is noticing the tears streaming down my face; trying to keep it together for them and for my own dignity, such as it was. 


Now: Sitting solo. G at another event. Z up on the balcony with her girl posse, all small but mighty. Scornful expressions masking…nervousness? Nah. 

Then: Tears.
Now: Yawns. Have already seen this presentation. Plus, not worried. 

Then: Curiosity tending toward fretting: Will these new teachers really see my child? Will he succeed here on his own terms? Will my child be bullied during this awkward time of life? Will G’s learning differences be scaffolded in such a way that his intelligence can shine? 
Now: Curiosity, pure and simple: What will those teachers I was in close contact with for G think when they meet Z? Will my child be actively kind to “different” kids like her brother? Will Z make an effort to do better if getting decent grades is easy for her? Will her developmentally appropriate “attitude” be toned down in class? In the lunchroom?

Then: All-out trepidation about the changes, from multiple classrooms to teacher-specific homework assignments.
Now: Relief, knowing I won’t have to intervene or oversee Z constantly—vis-à-vis homework or anything else. 

Then: Organizing Team Friendly Face.
Now: Admonishing (“Please try to look a bit less haughty — there are students here who feel intimidated and scared”).

Then: Praying.
Now: Sighing. 

My special “expertise” has always been around having two very different kids, but these four-years-apart experiences encapsulated that reality for me in the most striking way. It’s nice to see in this latest iteration that from time to time I am able to avoid having a total panic attack when a total panic attack is not warranted (I’ve wondered about that). 

Then: Despite all that, my kids are alright. More than alright! 
Now: Ditto!

Then and now, I am grateful for these two precious beings and for the ways we all persist in growing and trying, together. 

Love,
Full Spectrum Mama


 
Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!





Tuesday, March 13, 2018

AWARENESS, ACCEPTANCE, INCLUSION, AWARENESS, ACCEPTANCE, INCLUSION, AWARENESS, ACCEPTANCE, INCLUSION, AWARENESS, ACCEPTANCE, INCLUSION…


I can keep going. 
Dear Persons,a blog I usually really like (which is directed toward professionals working with diverse populations) recently published a post about potential new blood and urine tests for autism.

I won’t name the blog or the post because I don’t want to be a troll, but here’s the comment I posted after reading the piece:
“This piece frames autism as a disease. Certainly, some see 
         it as such, but there are other more holistic perspectives -
         - and I could see where this approach and post would feel 
         hurtful to some readers. It is possible to report on news in 
         a more inclusive way.”

Sometimes I feel like so much progress has been made around inclusion, acceptance, and awareness; other times I feel, well, hopeless. So I just keep doing my thing. 

I can keep harping on these things - and I will. 

Several readers suggested I post this interview (in which I do some more of that there harping on awareness, acceptance, and inclusion) here, but please do visit it on the original site:


What is one thing you’ve noticed neurotypical parents of children on the spectrum don’t understand about autism?
Hmmm…One thing? Maybe just that a different brain is not an inferior brain.
Here’s one example: my neurology responds violently and immediately to some artificial odors. I can get a vomiting migraine from smelling certain candles, air fresheners, perfumes, or cleaning products for even a few seconds. Does this make me weak and inferior? Well, it is inconvenient! But I actually think I am sort of a canary in a coal mine. I think those scents are probably not good for anybody’s brain…

Another example in this vein: a lot of neurotypical people, including parents, see black and white thinking as a problem or weakness and try to decrease it, while I – and I taught college-level ethics for a decade –  would argue that it actually often functions to make those of us on the spectrum who think in these ways highly, highly ethical, willing to endure the inconveniences that others may avoid or excuse by resorting to “grey areas” (examples of this might be high rates of vegetarianism or the lack of willingness to “use” others to get ahead…).

And to sort of turn this question around: I think people on the spectrum, including children, often feel that labels and diagnoses are used against us when maybe the people who seem to be doing so don’t intend to be that way. We all need to make sure we very clearly and intentionally use language and labels for understanding, rather than judgment. My mother always says she wishes she’d known what was going on with me as a child because she found it very hard to connect with me and I seemed to be “in my own world;”  if she’d known about neurodiversity, she could have come up with strategies for acceptance and understanding…As a consequence of this lack of knowledge and communication, I know I – like very many neurodiverse people – often felt that she (and others) wished I had been born “normal.” This is something, as I address below, that is no longer necessary with our contemporary knowledge and awareness.

Similarly, if you do choose to try to address certain differences, absolutely do let your child or loved one know that any ideas about changes, modifications, accommodations, or therapies come from a place of enhancing their life, not “correcting” them.


Your website mentions that your blog is being turned into a book. How will it be organized? What is the book’s primary purpose?
The book is still in the planning stages as I’ve been inundated with editing work, but it will be organized into chapters that reflect its primary purpose which is, I think, basically to offer some examples of how we squeezed hope and success and acceptance and even laughter out of some less-than-ideal circumstances.

I also have a daughter who is allistic and has behavioral issues because of having been adopted and suffering from an attachment disorder. She is basically the stereotypical opposite of stereotypical people on the spectrum: super savvy, manipulative, not particularly attached to being truthful, tuned in to how she can ‘win” every situation, attuned to social nuance, extremely ambitious, oriented toward fitting in and normalcy, calculating…She is the master of every social situation she finds herself in. Also, she’s completely not “sensitive,” emotionally or physically. She’s like a tank. A lot of what I address in my writing is what parenting these two extremely different kids looks like – and what I have learned from them. My idea was always that if something works for us, it should work for just about anybody because my kids are REALLY different from each other. I will also share in the book stuff about our “disastrophes” and funny stuff as well, as I do in the blog. And in both (book and blog) I do reference scientific and philosophical developments, as well as social issues and changes, because I like to use my academic background to make these subjects accessible and implementable.

As for basic organization, the chapters will be designed to address the main “stuff” that people and parents deal with, including acceptance, advocacy and self-advocacy, school topics, social possibilities…


What mistakes do neurotypical autism advocates make?
The biggest one it seems to me is speaking for autistic people. Very few of us are 100% unable to communicate in some fashion and, trust me, we all have plenty to say. If a neurotypical person has ZERO IDEA what it feels like to be neurodiverse how can they be in charge of designing spaces, educational materials, etc. for someone whose brain responds very differently from theirs in ways they might not even be able to fathom? At the very least, neurotypical people advocating for or involved with neurodiverse people should really, truly listen to them — and believe them. Then act/advocate/design/scaffold/step away accordingly…

Here’s a universal issue: generalizing. Parents, teachers, helpers, therapists: make sure you are really addressing the person in front of you! We are all different. If you’ve read or heard something, let’s say that “autistic people don’t have empathy” (a huge pet peeve misunderstanding of mine, because what some of us DO lack is the ability to easily discern how people feel, or process their responses quickly or easily, but I have NEVER met an autistic person who didn’t care – deeply – once they understood…), investigate for yourself whether the unique individual in your life actually lacks empathy!

And this isn’t really the case with many parents I’ve met, but I have seen it in school programs, including programs which train people to work with people on the spectrum, but I do see people looking at autistic people as, how can I say this…almost as study subjects/specimens more than people. My son was in a social group at a local university and I hadn’t read the fine print and there were a whole bunch of people watching the kids from behind a one-way mirror, and I was like, “DO THE KIDS KNOW ABOUT THIS?” And they DIDN’T. You can be sure I took him out of there…And actually that was when – in  a desperate bid to have some social interaction going on – I found my now best friend and her son, who is on the spectrum and my son’s best friend. We make our own (albeit a little bit nerdy, maybe…) “social group.”




On your website, you explain that “one of the greatest things to come out of the neurodiversity movement(s) is this idea that the ideas and thought patterns of divergent neurologies may be equally valid and in some cases superior.” Do you have examples of how/where you see this changing?

Oh, all over the place! In the swarms of neurodiverse blogs and books and various online and RL communities. From this abundance alone, awareness and acceptance are growing. And respect. It’s like the way in which having more than one ear piercing or blue hair made you a “freak” when I was a teen and now they are “normal.” It’s that familiarity, along with the awareness that different neurologies bring different gifts, such as intense focus or ultra-in-depth knowledge…
When I was a young, “different,” female person, the only thing I found that spoke to me was the book Nobody Nowhere; now we see Temple Grandin on mass market bookshelves…Neurotribes is a fabulous resource, albeit one written by an allistic person. I should make a list!! A quick web search shows zillions of websites and communities advocating for autism awareness and acceptance…We still have a long way to go, though, so let’s keep up the good work!


How can individuals (both on and off the spectrum) promote the furthering of this benefit of the neurodiversity movement that you describe above?
Just keep putting ourselves out there, however we feel comfortable – writing, speaking, marching…I have to say my son has been a great teacher to me about this: while I have always talked about the equality of all people and the unique strengths (as well as challenges) of neurodiverse individuals, there were ways early on in which I was trying to get him to “pass” (because I myself had such a hard time growing up “different”). He wasn’t having any of it! He’s very open about his wonderful self and never tries to act like everybody else. Because he’s also a fairly happy and confident guy, he’s won a lot of people over who might previously have used “autistic” as a slur or might never have met an autistic person. So I think the secret lies partly or even mostly in CONNECTION.

Of course sometimes we get discouraged, so that’s when learning more about our unique neurologies can be even more helpful: what do YOU need to recharge so you can be part of this progress?


What are the most important things you are doing for your neurodiverse son to help him develop a positive autistic identity?
One of the main things definitely stems from being neurodiverse myself. I discuss obstacles I’ve faced as well as identify areas of success. I’ve also shared lots of biographies of successful and amazing people on the spectrum (for example, he loves Pokemon and the creator of Pokemon was on the spectrum).  We live in a fairly rural area but I’ve tried to find ways for him to participate – he also plays Magic: The Gathering and has played in local tournaments.

I’ve also tried to steer him toward classes and school activities that will support and nurture him and maybe help nudge him toward worlds where there are statistically more people on the spectrum – sciences, languages, technology… A dear friend of mine, and the most brilliant person I know, struggled early on with undiagnosed “differences” (of a “typical” Asperger’s-type). He is now a highly successful philosopher and public intellectual and I’ve always told my son about him and they are beginning to correspond.

That being said, I am also always trying to find a balance between supporting his interests and trying to help him develop skills for self-advocacy and (possible) independence. He tends to feel I am being critical when I push him to develop habits around things he doesn’t think are important, like hygiene or homework, so I work really hard in attempting to get him on track with these things without making him feel bad or diminishing his self-respect and values.



One thing all parents and friends of people on the spectrum can do is celebrate, love, accept their neurodiverse loved ones just as they are. Everybody – neurodiverse or neurotypical – can grow and do better if given a chance, but I think we are most likely to do so if we feel loved and have a foundation of confidence and security in the first place.


Onward!

Thanks and love,
Full Spectrum Mama





 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!


An InLinkz Link-up

Here is a post by a dear friend who was trying to "hop" but may or may not have been successful:
http://worldwecreate.blogspot.ca/2018/03/about-rare-sensory-deprivation-in.html

Tuesday, February 13, 2018

GAMING FOR PARENTS





Lets play a game, and in that game the rule is, everything I say is annoying and wrong. 

This game is called…The Teenager Game

Here’s a brief round from just the other morning:

FSAM* [cheerful and encouraging]: G,  if you have to stay the whole period for your test but are done,  why not use that time as a chance to bring up your grades? You know, work longer on the test after giving your brain a little break. Or ask your teacher what other work you can do! 

G [ultra-sullen/condescending]:…Do you have to talk to me? 

FSAM [caring, thoughtful, respectful]: Z, The writing program ends in April, right? How is your writing going?  

Z [side eye]: We will send it in in April. 

FSAM [confused and/or correct]: Well…doesn’t that mean it’s over?

Z: [shrug].

The Teenager Game is pretty exhausting. Like any parent with teens, I often wonder how to get through to them. Almost everything I say to them is, quite typically, met with disgust and dismissal. 

By the way, how did they get this “grownup,” anyway? 

When I was pregnant and had begun the long process of worry that is a big part of parenthood, an experienced mother of three grown boys told me something that really helped me through my first few years as a parent: “The odds are with them.” 

It was such a simple phrase, but it truly carried me through some rough moments. One kid would get croup and I’d be up at 3am holding him or her, listening to what sounded like a death rattle in a steamy bathroom and I’d be scared out of my wits. Then  I’d think, “Jill told me the odds are with them! How many babies have croup right now? Lots! S/he’s gonna live!” With each wee bit of independence or separation, too, I would start to spiral. Then I would remember: “The odds are with them!” It was such a comfort. 

But there’s a catch now. The things is, with autistic kids — my son, G, is on the spectrum — the odds aren't with them. Without getting into the precise (very daunting) statistics, people on the spectrum are significantly less likely to achieve all sorts of things that typical people mostly take for granted, like independence, employment, academic accomplishments, romantic relationships, parenthood, health. And kids with behavioral and emotional issues, like those my daughter has struggled with due to her attachment disorder, do so much better in the long term when those issues are addressed in their younger years. 

So in this “game” of teenage disaffection, the stakes feel higher in the Full Spectrum household, as they would in any household with differences and disabilities. I have to get through to my teens, since the things most people take for granted will eventually happen for their kids - independence, mental health - are not a given. I have to tread a fine line between accepting that my children are beastly teens, while remaining alert for any signs of impending disastrophes. At the same time, I have to not have a nervous breakdown?! 

So how do we improve the odds? Ideally, while not having nervous breakdowns, not breaking the kids, without the kids breaking themselves, and while presuming competence for all, we will also be able to encourage them and help them flourish as the unique, irreplaceable, precious beings they are. 

And this isn't a zero-sum game. The more our loved ones with differences are uplifted, the more they succeed, the more progress, acceptance, and awareness for all, right? After all, that’s the whole point of this here blog. 

Stay tuned/bear with me as I approach this transition phase, along with my Meeting Friend, and a few other loving yet terrified parents of teens. I will share input from parents and guardians and individuals who have been there as well. 



Love,
Full Spectrum Mama


* Full Spectrum ANNOYING Mama


P.S. FSM has received some good press and stuff lately, and readership continues to climb (at 175,000+ as I write!). I was interviewed, about, among other things, activism, advocacy, and parenting a neurodiverse child as a neurodiverse parent here, at this great site that recommends asking real live autistic people about how they feel and what they want in their lives. Also, I am so honored and excited to have been named a "Top Autism Blog for 2018" - Oooh, I just have to share: "Full Spectrum Mama writes in a refreshingly honest style with beautiful rainbow illustrations that accompany her posts. It’s one of the most unique autism blogs on our list."

Action Behavior Centers







Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!