Tuesday, January 10, 2017

SHOULD I HAVE SAID SOMETHING?



“Speak your mind, even if your voice shakes.”



Late October. I am on a walk with my puppy, who has just been diagnosed with Lyme. I stop to chat with an elderly neighbor, and we get on to the topic of tick “prevention” meds, veterinary care in general…She knows I am a writer and editor and tells me I “should have been a vet - what with the cost of tick medicine…” She says her granddaughter wanted to be a vet but “instead works with autistic children,” and, “What a mistake! It would’ve been easier to work with animals!” As I often am in such situations, I am, briefly, paralyzed. I wonder if I should say something. And I choose not to do so. 

For one thing, my neighbor is elderly and I don’t want to seem confrontational. For another, I sometimes get tired of always having to explain things and advocate; I save that energy for where it really matters: primarily for school, family and close community, and for thinking about and researching G’s future options… 

Later I realize it seemed like it would have been an “easier” choice if she had said “women” or “Chinese people” instead of “autistic.” But it’s NOT. In some ways, there’s a big difference between a casual statement by a neighbor and bullying or discrimination…But in a very real way these are all on the same continuum. 

Dear Persons, I can think of so, so many similar instances when I have said something about injustice or discrimination or stereotyping and some where I have not . Times when I have been angry and said angry things. Times when I have been bullied for standing up for my child. Times when I have been articulate, convincing, empathy-inducing. Times when I  have been speechless, like when someone yelled a racist slur at my daughter, or just plain confused. It can be scary to speak up, and, although I usually don’t lack the courage, per se, my sensory processing differences (SPD) can mean that when I feel scared I can’t also process a coherent thought/response until after the moment has passed…


And then…the election. Even my readers abroad know which one I am talking about. 


This is a moment in history when it is important to be very clear and so I want to say something here. Here is one place I speak up, always. I cannot separate out whether my stance comes from having one child on the spectrum and one child who is a person of color (and many family members and close friends of color and/or of non-hetero orientation/identification and/or on the spectrum and/or of non-Christian religious affiliation…), but my stance and our stance as a family is very simple:

The Full Spectrum family stands with all people of color and the Black Lives Matter movement. We stand with the First Nations of the world in their struggles for recognition, sovereignty, and protection of lands. We stand with our brothers and sisters on the spectrum, our disabled brothers and sisters, our differently-abled brothers and sisters, our diffabled brothers and sisters. We stand with our immigrant brothers and sisters. We stand with our Muslim brothers and sisters. We stand with our Jewish brothers and sisters. We stand with all women, as well as with LGBTQIA communities, with all people who believe in equality and the right to choose who we love, who we want, what happens to our own bodies  - and, further, we believe in equality and the right to choose even for those who don’t agree with us

We stand with all oppressed peoples, as well as with all people with financial, white, or other privileges who believe in equality and use their privilege(s) for good. 

This goes beyond wearing a safety pin, attending protests, and writing postcards as part of the Local Love Brigade, to being willing to open our home and beyond. When they come for you, when you need solidarity, call us to your side.  

Would we hide you? Yes. 

This is one time our black and white thinking serves us: there’s no room for equivocation here.

We families who have significant differences from “the norm” are used to standing up for ourselves - and, often, others. We might sometimes be tired, but we are experienced advocates, sometimes to our own surprise. These skills are especially important now, as we see hate crimes and discrimination on the rise, and ignorance being celebrated.  Sure, many will not listen or truly hear us, but some people will, and that makes our efforts worthwhile.



Figure I - Not Saying Something vs. Saying Something


Should I have said something? Yes. Next time I will, even if it’s hard, even if I’m worn out, even if my voice shakes. 

I hope you will, too.

Love,
Full Spectrum Mama



P.S. Coming up in my next post: ways to say something!



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!




Wednesday, December 21, 2016

HOPE



Dear Persons,

On this shortest day of the year, the Full Spectrum family wishes you hope.

Over the last five years, this blog has grown from a solitary voice in the dark looking for community and shared stories to a force for advocacy and awareness over 100,000 readers strong.

On this solstice, I am grateful for you, dear readers. Together, we are shedding light on the worth of all people. We are exploring the ways in which our challenges can be met with justice and grace, and ensuring that the unique gifts of every individual can be nurtured and celebrated.

Much love,
Full Spectrum Mama

Tuesday, November 8, 2016

WE ARE THE CHAMPIONS

Dear Persons,

The recent news of an autistic boy named Chase Coleman being assaulted during a cross country meet, essentially for being Black and autistic, broke my heart. G runs cross country, and although G is not Black or non-verbal I share many of the concerns this boy’s mother had, such as worrying about G getting lost during meets. G’s Sensory Processing Differences (SPD) and other challenges can make running cross country distances and trails a minefield for him, yet he keeps trying, usually with a smile. He also hasn’t digested some of the central customs of the sport, such as being at the starting line with his number pinned to his uniform (don’t ask). 

Like Chase’s mom, I attend all of G’s meets, because I am immensely proud of course - I am sure Chase’s mother believes her son is a real champ, as I do…But I also go to every meet because I want to keep an eye on things.…make sure everything goes okay.

My daughter, Z, also runs cross country in her elementary school. While I try to attend all of her meets as well, I don’t worry about her in the same ways - at all. East Asians (she is of Chinese ethnicity) are not stereotyped in the same ways that people of African descent are, so I don’t worry about her being targeted as a threat (though I do worry about her vulnerability, as most parents of daughters do…). She’s fast as heck and has a great sense of direction, so I don’t worry about her losing her way or her “performance” or confidence…

She’s celebrated on her team, where it sometimes seems my G is merely tolerated. 

You know…the Full Spectrum.

Back to Chase. I was having that feeling that some readers will find familiar where you suspect your child’s very real efforts are not being appreciated, so I decided to write G’s coach a letter (below). I’d just finished writing it when this hit the news: 



Chase was just standing there - and he was attacked! In “self-defense.” As it happens, I have many close friends and family who are people of color and/or autistic. But I like to hope that just because one isn’t related to or close friends with a certain “type” of person doesn’t mean they are “suspect.” Chase’s story reminds me that DIFFERENCE reads, to so many, as DANGER. Thus, children with differences are vulnerable, perhaps none more so than black male children. 

Does it have to be this way? Must difference lead to ASSUMPTIONS? And why are those assumptions usually negative? Let’s just be very logical here: how can a SKIN COLOR or DISABILITY be THREATENING…unless  wholly through ignorance?

And what, exactly, do we mean when we use the word DISABILITY? Believe me - I know it’s complicated. But I’d like to focus on one aspect vis-a-vis Chase Coleman, and my G: For one thing, a difference BECOMES a disability when one is seen as less than, or treated as such, or denied opportunities or inclusion or even basic assumptions around shared and equal humanity BECAUSE OF THAT DIFFERENCE.* 

I know this is a broad definition of disability, but it comes from my and my family and loved ones’ lived experiences. Differences such as SPD and autism are often called “invisible” disabilities, where being Black is (usually) not invisible….Nor is being Black known as a disability per se. But by the definition of this one aspect of disability I am discussing here it may certainly be experienced as such. 

In this context, a disability is something that prevents someone from living their best life, from being their best self, from full self-expression or activity or participation…NOT because of any quality inherent to their being (neurology, skin color, gender, body type or shape, intellectual capacity, LGBTQ status, nationality, ethnicity, age, religion…), but because of the way their environment is designed (for “normal” people) — or because of the attitudes - including ignorance - of others

How wrong is that? 

We, in our communities, need to find ways to celebrate difference, not squash it. We need to help one another see each other as human beings, united in this crazy, hard, wonderful, awful, confusing thing called life. Be curious about each other, rather than thinking we KNOW already who others are because of appearance or labels.

WE need to be Champions of acceptance, understanding, inclusion - for ALL the different kinds of Champs out there!

Dear Readers, if we will not be the champions, who will?

On this deeply fraught election day, where so much is at stake for immigrants, women, people of color, ALL OF US…Here’s one tiny way I have tried to explain G’s differences to so that his unique strengths and challenges will be seen: 

Dear Coach,

I wanted to thank you for working with [G] this fall, for pushing him and expecting the best of him. He has improved immeasurably (from 39 to 27 minutes - and I think he may even do better at the state meet!). He has also grown in confidence.

I wanted to fill you in on a few things about [G], in case they are unclear. You may think he is not taking things as seriously as he should or not working as hard as he can or being as responsible as he should...

As you know, [G] has asperger syndrome. Everyone with asperger syndrome is unique, but some of the aspects of it, such as social and motor challenges, are shared by many. 

[G] has something called low muscle tone. This means EVERY physical activity is harder for him because his muscles have to work much harder than they would if he had average or high tone. I'm sure you know what this means, as an athlete yourself, but you likely don't know what it actually feels like. I do - because I had low tone myself as a child. 

Everything my athletic family did (biking, running, soccer) was practically torture for me. In those days no one knew about this stuff. Anyway, I became very athletic over time and somehow overcame that disability.  I have "normal" muscles now for the most part and physical activity feels enjoyable - **completely different** from how it felt when my muscles didn't work efficiently or well. I think this will happen for [G] too, but I speak to you as an athlete who once struggled as [G] does: please understand that running is Literally harder for him than for the other kids.  He's not exaggerating or making drama.

Also, [G] has many motor skills and balance issues. It's very brave for him to get up again and again when he falls many times, sometimes quite badly, every time he runs. I know other kids get hurt from time to time, but [G] is getting hurt practically EVERY time - and he's getting up again and running again

It's also a mixed bag that he feels humiliated when he falls. On the one hand, it's actually social progress for him to realize there is a humiliation factor in falling. At the same time, he now has to weather that humiliation in front of his peers, for things that are out of his control (motor skills, balance). I know his teammates are supportive, but he still feels bad. So it's DOUBLE brave for him to get back out there with both physical and emotional pain.

Finally, I know sometimes [G] can seem flaky, but this is his central disability right now: a lack of executive function. I am less surprised when he misses the bus for a meet, or leaves a shoe (WITH HIS PHONE IN IT) in the port-a-potty where he changed into his uniform, than when he remembers, every single day, his water bottle, his school clothes, his phone…

I want to share with you that the [G] you are seeing mostly keep track of bus times, his stuff, transitions, etc. could never have done this even a year ago. I am happy every day that he keeps track of his stuff. I know it's a "normal" thing to do, but for him it's a huge leap - something that gives me enormous hope for his future.

So even though I know [G] is one of your slowest runners, to me he is a true champion and I am beyond proud of him. Thanks for being part of this amazing growth for him.

Sincerely,
[Full Spectrum Mama]

Thanks and Love, Dear Readers…Now please go VOTE,* if you have not done so.
Full Spectrum Mama



* For a small dose of perspective on just how good humans are at judging the worth of different kinds of people, consider that women in the United States did not have the right to vote until 1920. Yes, 1920!!!! Less than one hundred years ago...









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!



Tuesday, October 11, 2016

SEE EVERY SPARROW



Dear Persons,

One way to describe Sensory Processing Differences (SPD) is by using a filter metaphor: the sensory and neurological filters of people with SPD filter feelings, experiences, and/or surroundings differently than do the sensory and neurological filters of most people.

Some of our filters filter out more. Sometimes people with this sort of filter are called “seekers,” because they seek more sensory input, or they are called “under-responders,” because they feel/notice/process less sensory input than the average person does. 

Some of our filters filter out less. Sometimes people with this kind of filter are called “avoiders,” because they avoid the overwhelming input that certain contexts produce. They are also sometimes called “over-responders,” because they feel/notice/process more sensory input than is typical. 

Of course, all people have different levels of sensitivity, but these differences are magnified for people with SPD. Many people with SPD live with a mixture of filters, perhaps being extremely sensitive to taste, while craving strong movement (yes, movement is a type of sense, in fact, several sorts of sense - but that’s another post!). 

Sometimes a high level of sensitivity can lead to a sort of sensory shutdown that can look like low level of sensitivity! 

Sensory integration - the seamless intermeshing of the senses, and the “normal” processing thereof - can be challenging for people with SPD. My son G and I both live with a mixture of extra-strong and extra-weak filters. Bright lights and artificial odors can knock me out, but I have severe face-blindness (prosopagnosia) and can trip over my own feet. Lights, smells, even loud sounds don’t phase G - and he shares my face-blindness in abundance - but there are other things of which he takes uncommon notice. 

One of the most wonderful things about G is that he notices every single bird in our environment. Not just your cardinals and goldfinches, but every pigeon - “Look! A pigeon!” “Another pigeon!” and every single sparrow we pass on the street - “Oh mom - do you see those cute sparrows?” “Hey, guys - a sparrow!” “There’s a sparrow under that car!” etc. 

Some people dismiss this constant-noticing, or rib him good-naturedly about it (“Wow, a sparrow!”), and it’s sometimes inconvenient and time-consuming, but I celebrate it with all my heart.

Imagine a world where every individual person was noticed and appreciated, no matter how similar, no matter how different. Imagine a culture in which everybody took the time, made the effort, to really see every single other person. I dare to think such things as gossip, bullying, stereotyping…all those evils that come from pre-judging others and from not seeing each individual as equal and worthy in their own way…would disappear.  

G doesn’t filter out every sparrow as just another instance of a drab bird among many. Instead he enjoys a sense of wonder for each tiny miracle of sparrow individuality. 

What if we all tried to see every sparrow? 




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

Tuesday, September 13, 2016

"MOTHER APPEARS DISHEVELED"

Dear Persons,

I was listening to NPR not long ago and ended up sobbing in the car. Again. The segment that got me this time was on voting rights (read it, and possibly weep, here), and how in many states persons who have appointed guardians do not have the right to vote. Whether to apply for guardianship of my son is probably the question I struggle most with on a day to day basis (followed closely by even more terrifying questions about what will happen to him when I am gone). The thought of my brilliant, politically-engaged son being unable to vote was one more tally in the non-guardianship column. I want to always err on the side of presuming competence, yet I always want my child to be able to, you know, live...sometimes despite himself.

I mention this not because this matter is resolved, but to point out that for parents with atypical children, and for people of difference in general, the world out there (your basic radio show, and so on) can be a bit of a minefield.

I have many friends – who I still speak to! – who like to say “Oh, it’s hard being the parent of any kid.” Sure, I will give you that. And I will gladly agree we most of us love our kids the same agonizing, rapturous, heart-expanding amount. But I am not Full Spectrum Mama for nothing: I have one typically-developing child and one who is developmentally and neurologically atypical and I can assure you it is not the same kind of hard! When your child develops differently there may be taken-for-granted, essential life skills that he or she may develop late...or never.

The idea that G will “grow out of it” – whatever “it” is – is thus often meaningless and certainly not reassuring.  For example, all his life G – despite assiduous and almost-constant attempts on my part to change this - has used his clothing as a combination napkin/tablecloth while eating. And that’s when he notices he has food on his face or hands...which he usually doesn’t. In the scheme of things, I’d like to think of this as minor – I mean, G is extraordinarily KIND and FUNNY and SMART – yet how will this be viewed by a potential employer? Or partner? (And no, I do not mean typical sloppiness, my “all kids have challenges/all boys are slobs” friends.)

Or perhaps your child is or you are (as am I) at the other end of the noticing/reacting spectrum and barely able to function because of obsessive compulsive (OCD) needs and/or sensory overload from crumbs and the like?

Maybe G’s table manners will improve someday. Maybe someday I will be able to ignore a single crumb on my finger. But sensory processing differences (SPD) and other neurological differences are often integral to who we are, part of our very biology. Neurodiverse and differently-abled persons may develop neurological, practical, and/or emotional strategies to function in a world that was not designed for them – and sometimes doesn’t make sense - but there is much we will never “grow out” of...

My conservative yet highly clinical estimate is that I worry about G a million, billion, gazillion times more than Z, my typically-developing, typically-abled daughter, even though she has had her issues as all children do...

I usually write more from the perspective of a child advocate, or in efforts to spread awareness and acceptance of difference. This time, I wanted to write about what the parents I know who have children with extraordinary challenges feel like a lot of the time, both to acknowledge and honor them (us) and to spread awareness on this front.

I am not complaining – my child brings me extraordinary wonder and joy every minute of every day – I am explaining.

Those of us with who are different, or have children with differences – or both! – have to navigate more-complicated, often “inappropriate*” (to us!) environments and interactions – environments and interactions that may feel overwhelming, cruel, arbitrary, opaque -- almost all the time. In a very real sense, the “problem” is the world, not our kids/us.

My Meeting Friend became my dearest and most-cherished support-network-of-one when mutual friends who knew our children kept suggesting we connect, and then our paths kept crossing en route to and from Meetings, therapies, etc. etc. My Meeting Friend was once at a Meeting – of which one has exponentially more with an atypical child (and yes I know this from personal Full Spectrum experience) – and glanced over at what one of the “professionals” there to evaluate and assess her son had written on a pad and read, “Mother appears disheveled.”

Now this is a mother who has willingly and bravely made changes and sacrifices for her child beyond what most could even imagine. That very day alone I am positive she had already cooked several different healthy breakfasts taking all individual food allergies into account, carefully planned out ways for both of her children to have their own kinds of successes (including – egads! – athletic successes!!!!) and learning experiences, gone to great lengths to ensure social interactions and a beneficial sensory diet for her son, written several emails regarding grades, social situations, IEP, 504,etc.,  made sure her other child felt “just as important,” oh - and worked at her job...** With a smile on her face.

I am impressed she even had clothes on after what she has been through. But there that note was -- amidst, I am sure, other stuff (such as “EXCELLENT parenting!” and “Kid is PERFECT, just a WEENSY bit unsuited to the average boring old, sensory-/social-nightmare classroom”)  --  ...”Mother appears disheveled.”




Figure I – Disheveled Mother


...Ya think? And I wasn’t there at that particular Meeting, but I do know that she has had the grace to laugh about it ever since.

My friends, do you appear disheveled or know someone who does? From crying in the car, maybe? Are you disheveled on the inside even if you appear “heveled” on the outside? You are in good company.

Much Love,
Full Spectrum Mama



* “Inappropriate” is such a trigger word for many on the spectrum. There are a lot of “normal” things we find “inappropriate,” believe me (and there is no monolithic “we” in either neurodiverse or neurotypical contexts!). Nonetheless our children are often told, especially in school, that X, Y, or Z is “inappropriate”...One hopes that some consideration is given to the possibility that people who perceive and process differently may have different standards – and not always assume that neurotypical standards are the correct and appropriate ones. 

** How do I know these things? Because I know my Meeting Friend. But also because I and most other parents I know who have children with differences do these types of things Every Day. I just wrote a letter to G’s teachers and “learning specialist” while I wrote this footnote.





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!