Tuesday, June 12, 2018

HAVING IT BOTH WAYS

Dear Persons,

I had an argument with myself yesterday.

I was thinking about this whole process I'm beginning for setting up G's future.

How I want him to have all the support he needs. And all the respect.

If you’re reading this, you probably have your reasons for doing so — and you probably understand some of the paradoxes of living with difference.

But yesterday my critical self — representing both a certain logic AND people who just don’t get it — accused me of trying to have it both ways.

I want G to have a safety net and scaffolding that will help him stay healthy and on point with his studies and/or work. That means federal, state, local, community, and family resources. And it means I will advocate and fight for these resources…

I will do so even as I believe in his capacities to thrive, succeed on his own terms, and even excel on a  wider scale — and will also advocate and fight for his equality on every level. 

He’s autistic and he’s brilliant. Partly, he’s brilliant because he’s autistic. Yes, without pressure he might never clean his room or his body again; yes, I hope someday that won’t be the case. But do you need to know anything — anything at all —  about birds, Pokemon, ‘90s punk funk, or Magic the Gathering? 

He doesn’t self-regulate vis-a-vis screen, sleep, food, etc. and he doesn’t self-regulate being friendly, loving, corny, and generous. For the foreseeable future, he will continue to need sensitive and wise supervision in a lot of the basics. But do you need a hug, a smile, a laugh, someone to look at you with eyes and heart utterly devoid of judgment? 

Think of all the ways people without extraordinary differences are helped out by other individuals and institutions, from federal poverty programs to local business initiatives, from recovery groups to the uptick in adult children living at home. We all need help! 

But being different is complicated. The types of public and private assistance that are commonly available are often predicated on being unable to do things that people “should” be able to do. Well, I’d like to note (not for the first or last time) that our G — like so many of his fellow “non-typical” people — can do a lot of things that not just anyone could.

Because society is the way it is (have you heard of the social model of disability?), he will need and deserve plenty of support and scaffolding if we are going to find out what he is truly capable of. At the same time, he will need and deserve a lot of respect and encouragement. All of these needs are valid and worthy because he's a disabled/differently-abled person, a twice-exceptional individual…a complex, complete human being.


Figure I - Valued Contributing Member of Society 




Figure II - Person Whose Needs are Valid and Worthy 


My hope is that G can be sustained by his environment in such a way that he can use his unique skills to become a valued contributing member of society. If that’s having it both ways, so be it.

Love,
Full Spectrum Mama






 
Welco
me 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, 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