Monday, January 9, 2017

Online Debates

I am *cringing* as I log on and see my last post date.  I'm not going to say it's a new year and I have a resolution to write more and all that jazz.  I would like to write more.  A lot has changed since my last post but that's another post for a different day.

I'm feeling quite upset by an online "discussion" I participated in tonight.  It ticked all my social anxiety boxes in one fell swoop.  What does that look like? Well, initially it's my heart racing, sometimes sweaty palms.  There may or may not be perseveration on whatever it was that upset me.  There's all of that tonight plus an upset stomach to boot.

I recently bought an electric pressure cooker.  Feeling very intimidated by it, I joined a few Facebook groups to learn more.  Cooking groups- quite innocuous and safe, right? One would think so.

In the bigger of the two groups, a woman posted a photo collage of her 16 year old autistic child using the pressure cooker to cook himself a meal.  In her post, she listed intimate details of his past instantly turning this into an inspiration porn story that really bothered me.  I decided to let it go.  Pick my battles if you will.  Not much later, the same post had been shared into the smaller group.  I couldn't overlook it twice in one night so I said something.  I responded that I was uncomfortable with this woman posting intimate details of her son's life on a public Facebook group.  I questioned whether or not she had his permission to post such details.  As I suspected, I was quickly shot down by other comments basically telling me that she is his mother/legal guardian and she can post whatever she wants about him.  This person is sixteen years old.  He's not a child any longer and in two years will legally be able to vote.  I continued to state my opinion about being bothered that these intimate details were being posted on a public Facebook group.  I was polite and respectful in my responses.  I quickly realized I wasn't making any headway and my anxiety was getting higher and higher.  In my last response, I said we would agree to disagree and wished everyone a good night.  One of the group's admins responded that since his mother posted it she does have legal authority and to get off my high horse.

Even now people are continuing to comment on the post, all inspiration porn style saying how great it is.  One woman even said how inspiring it is to read since she has a young autistic child herself.

I was upset because these private details she posted were posted to support her stance of how much he had "overcome".  An autistic will always be autistic.  It is how we are born and it is as much a part of us as the color of our eyes.   We can be beaten down by ABA, we can teach ourselves societal norms and work hard to appear less autistic- because this is what society demands of us.  But at the end of the day, we will always be autistic.

I feel physically sick over this even now.  People in these posts, like this sixteen year old, are vulnerable and need someone to stand up for them.  I am feeling guilty that I can't fight this fight.  I feel sad and angry that this man- because let's face it, at sixteen, he is a man- is being exploited so his mother can feel better about herself.  In what other situation is it socially acceptable to post intimate details of a family member besides the disabled, the elderly or children? Essentially, society's most vulnerable members? How would you feel if your husband/wife/partner posted intimate details of your life together on a public Facebook group? Would you be outraged? Devastated? Disgusted? Shamed? Would you feel betrayed? Children are people too and just because we brought them into this world, we as parents don't have free reign to share all their personal information all over the web.
Where do we as a society draw the line?

Wednesday, June 15, 2016

Internalized Ableism

I once again find myself with too much time between posts.  I hope that sometime soon, I am able to write more consistently.

We recently took our children to the movie theater on opening day of a cartoon.  Seeing as it was a Friday, most children were still in school and it was much more manageable for us.  I have come to realize since my diagnosis that I simply cannot tolerate movie theaters on the weekend.  It's just not worth the cost to me in recovery time.

There were only a handful of other people there when we arrived.  We try our best to time our arrival in the theater for when the previews are over, but this time there were still a few minutes left.  I was sure to bring my headphones with me and had them on when the movie started.  We quickly realized, however, that the noise was intolerable for one of my children, so I gave them my headphones.  The noise was completely overwhelming.  Even my husband, who isn't nearly as sensitive to noise as I am, remarked how loud it was.  I tried to plug my ears, but it's just not sustainable over a ninety minute movie.  I was near tears and did not know what to do.

At this point, I got up and went out to the lobby where several employees were.  I started to explain to the first employee what happened, that I'm autistic and don't tolerate noise, but I believe she was new and didn't know what to do as another employee came over to ask what was going on.  I asked again if the movie could be turned down, and it was done immediately and politely.  I went back in and was able to tolerate the rest of the film- although it was still way too loud for me without my headphones.

Later that day, I was thinking to myself how it was just so nice and gracious of the employees to treat me so respectfully and kindly.  I had convinced myself that I would email the manager of the theater to share my gratitude over my treatment there.  I even toyed with the idea of posting it on their Facebook page, but I quickly dismissed that because I didn't want it to turn into inspiration porn and be misconstrued.  I'm not often on the computer- hence my lack of posting- so I didn't get to the email right away.

The more I thought about it, the angrier I got at myself.  Why was I feeling so much gratitude for this theater that accommodated me? I paid the same amount of money for my ticket as everyone else- aren't I entitled to enjoy my experience just as much as anyone else, within reason? I quickly realized that these thoughts were a manifestation of my own internalized ableism.  It's rather insidious, internalized ableism.  It sneaks up out of nowhere sometimes, ridiculing me for not being able to do "simple" tasks.  For not "having it together" enough.  I had thought I had it more under control, but this theater experience showed me that I still have a lot of work to do in this regard.  I've been conditioned my whole life to set unrealistic expectations for myself and that will take time and hard work to undo.  For me at least, this is important work, because I don't want my children to grow up with this internal dialogue.  I frequently explain to them what's going on if I'm struggling- we take a lot of brain breaks in this house- and it feels good to be able to model that for them in a positive way.

My friend Ally wrote of her similar experience here (CW for strong language) and it was actually her post that really made sense to me and brought on that "aha" moment of clarity.  It feels to me that awareness is the first step in combating these unsettling habits from the past.  It's incredibly important to me to model healthy behaviors and relationships for my kids, so this one is definitely a work in progress for me.

Friday, January 15, 2016

I Have No Words

I have no words to speak tonight,
Reading over and over how we shouldn't be born.

Too much of a burden to educate,
We should be corralled into those "special" schools.

I have no words to speak tonight,
The ableism and shouts for eugenics weave their fingers around my throat silencing my screams.

You call for screening of my kind before marriage and procreation,
Your abhorrence and ignorance distracting you from the beauty and joy of my family.

I have no words to speak tonight,
Beaten down by the cruelness of this world.

They say we don't know how to feel,
If only they knew the weight of feeling too much.

I have no words to speak tonight,
The heartache of what this world holds for my children an agonizing reality I cannot accept.

Stand tall and proud again I will,
Most importantly for my children, but also for the misunderstood child I was.

I have no words to speak tonight,
The sorrow threatening to weigh me down.

Silenced, temporarily, but not for long;
For with tomorrow a new day dawns.

Thursday, December 31, 2015

Finding My Bliss

I once again find myself writing less than I want to, I'm hopeful that the new year will bring me better time management and more time to write.  Now that the flurry of finishing Christmas gifts (knitting and needle felting) has passed, this feels more realistic to me.

It's been an interesting year for me.  I virtually met an incredible group of people and joined the collaboration over at Respectfully Connected and perhaps just as importantly, had my own evaluations done this summer and received a few surprises.  It's been several months now since my results and I can honestly say it's brought about very positive changes.  I have a much deeper understanding of myself than I've ever had, and that is tremendous.  I now have the knowledge of why I do so many things that I do, and that there are actually others out there like me! That I'm okay just the way I am.  After a lifetime of feeling wrong and bad, that has been a wonderful freedom to finally have.  

I think another important aspect has been recognizing my sensory needs.  I guess I've always had this vague idea about some of them, but never really anything concrete.  And I of course thought/was led to believe that they were all things I needed to "get over".  Now, having a better idea of what's going on, I'm able to make the needed accommodations for myself.  Not a day goes by that I am not chewing gum.  Some days, the only times I'm not chewing are when I'm eating or sleeping.  I wear sunglasses year round, even on rainy and overcast days.  This is something I've always done, now I simply know the reason why.  Perhaps the biggest sensory change I've made are my new headphones which I received for Christmas.  I've always known that loud, unexpected noises scared me.  Until receiving these however, I never realized just how much the smaller, day to day noises grated on me.  These headphones have been absolute BLISS.  I'm not sure what to compare them to because nothing else I've ever experienced has brought such peace and calm to my day to day life.  I'm not ashamed to admit that I ran through the battery in less than a week.

I'll take a minute to explain how these work because when I first used them, they didn't at all meet my expectations.  The best way I can describe it is that they take the edge off.  Now if you're not someone bothered by sounds, or someone with super sensitive hearing (like me), this may not be an adequate description.  My expectation of them was that they would block out most sound/noise.  I now know that this was obviously unrealistic.  I don't have any technical knowledge of how they actually work, and it's been my experience before that my autistic brain expects one thing, and is deeply disturbed when the reality differs.  Another example of that would be a camping trip we took this summer.  Outer space has always been a visually stunning experience for me, so I was very excited to visit a Dark Sky Park this summer.  My autistic brain takes things very literally at times, so the experience I was wholeheartedly expecting was the picture seen on the site.  A stunning, breathtaking sky filled with constellations, planets, and other beauties in space.  The reality was very different.  The thing to remember, and that I realized later on, is that I have young children.  Young children who perhaps don't (yet) share my passion for star gazing and are ill equipped to patiently, quietly sit on a blanket, without the use of their iPads, while getting eaten alive by mosquitoes.  Which is totally fine with me.  I had no idea what to expect at the actual park.  I naively thought we'd arrive and comfortably settle in and see absolute brilliance in the sky.  Had I done better research before planning our trip, I would have realized several things impeding an optimal viewing experience such as the fullness (and brightness) of the moon and the lack of anything really happening in the sky.  Needless to say, I was very sad and disappointed that my actual experience didn't meet my preconceived expectations.  But so it is.  

Back to the headphones.  Once I got over my unrealistic expectation of how they actually work, I realized what an incredible tool these would be for me day to day.  Honestly, I would wear them 24/7 if I could.  They are that amazing and have that much of an impact on me.  They really are ingenious in that I can still "function" in daily life with them on.  I hear my family speaking to me, I hear the TV/tablets/computer/music, but I hear it on a much more manageable level.  I wore them the other day to Costco and, wow.  What an incredible experience.  It made such a huge difference for me.  There was an incredibly annoying alarm beeping near the meat department the entire time I was there.  Really loud and obnoxious.  Think a fire alarm- it was that level of loudness and irritation.  So while I could still hear it with the headphones on, I didn't care.  It didn't bother me in the least bit.  It was really amazing.  I almost wonder if wearing the headphones takes my super sensitive and perceptive hearing down to the level that most neurotypical people experience.  I am very much aware of my privilege in owning these headphones and am sad that they are not more widely available to anyone who needs them.  I'm deeply grateful that I am able to have them as they have had such an incredible impact on my life in the short time that I've had them.  

I really hope to give this blog more attention in 2016 and to be more of a contributor at Respectfully Connected this new year.  I am excited to see what 2016 brings, as my first full year of awareness of my autistic self.  Happy New Year!

Thursday, November 5, 2015

Book Review: The Real Experts: Readings for Parents of Autistic Children

I woefully realized this week that it's been far too long since I've posted. I've come out of hibernation for what I feel is a very important book review.

I am a voracious reader of fiction. Always have been. Reading is my special interest, it is my escape from this overwhelming world we find ourselves in.

I was really excited to read this because some of the contributors and the book's editor are my wonderful co-contributors at Respectfully Connected. Though physically separated by different time zones and even an ocean, these people have had a profound impact on my parenting and on my own journey of self awareness and formal diagnosis. I was deeply touched to re-read Ally's essay "Letter to an Autism Mama" from her blog Suburban Autistics and absolutely enthralled to read Briannon Lee's newest piece "Finding Querencia". Morénike Giwa Onaiwu's piece on social media was one that I could really relate to.

I've long admired and respected Ally's writing and it was through her wonderful blog that I had the privilege to meet all the wonderful people who write for Respectfully Connected. Ally's essay is full of gentle, unconditional acceptance and should be given to every parent of a newly diagnosed child. She speaks so kindly; she gives parents permission to let go, to love their Autistic child wholly and unconditionally, despite what all the "experts" might be saying. She offers her first hand experience as an Autistic adult, that everything will work out in the long run.

I'm finding it difficult to acquire words to sufficiently describe Bri's essay. It's brilliant. It's raw. It's vulnerable, open and honest. I suspect it will speak to anyone who has spent their life feeling like an outsider looking in.

Morénike's piece about social media is wonderful. There is so much doom and gloom these days associated with social media and how it will be the downfall of the current generation. Morénike, as well as myself and I daresay many Autistics, beg to differ. Many of us communicate easier through the written word, myself included. 100% of my Autistic support is online. I have been unable to find anyone local or any local events that can meet my needs. I know I need to keep looking but I take great solace in reading Morénike's essay and knowing I am not alone.

As I was reading Nick Walker's "This is Autism", I was nearly moved to tears. To be able to read someone else's thoughts and ideas and to have the exact same thoughts and ideas myself was absolutely indescribable. To see these things that I have spent my entire lifetime feeling shame for, for these feelings of wrongness, to see these in print from another person like me, is absolutely sublime.

I've touched on only a quarter of the outstanding essays compiled in this book. They all affected me in one way or another. I could find pieces of myself in nearly all of them.
Unless you are one of us, unless you are different, or a deviation from the norm of society, I don't think that you can fully appreciate just how important this book is. This should be required reading for everyone.

You can purchase your own copy here; an e-book version is available immediately and I believe the paperback will ship out in a few weeks.

Saturday, August 29, 2015

A Diagnosis

It's taken me much longer to actually sit down and write this post than I've wanted.  However, life in the summertime with small children often has other plans for me.

Earlier this year, I virtually met a wonderful group of women and joined their blogging collaboration over at Respectfully Connected.  At the time, I was identifying as Autistic, but had not pursued a formal diagnosis.  For various reasons, I waited until this summer to seek a professional evaluation.

Although I wasn't thrilled with my overall experience at the clinic I chose, I feel content with the end result.  I knew I was Autistic.  Knew it with every fiber of my being.  Even feeling this way, as the appointments got closer, and subsequently did not proceed as I'd expected, I had a sense of panic set in.  What if? What if I'm not Autistic enough for the test to pick up? What if I made too much eye contact during the appointment? What if...? I think, as a society, it has become so ingrained that we as individuals are incapable of knowing better than the professionals.  Or perhaps that is more so the idea that I was raised with.  Even though I knew deep down that I was Autistic, I still desperately wanted that "real" approval.  It felt, and still feels that society would not accept me as Autistic without the formal diagnosis of an Allistic professional.  The irony has not been lost on me.

My formal diagnosis is Autistic with social anxiety, ADHD and gifted.  The first two were not a surprise to me at all as social situations have always been difficult and still are a struggle as an adult. I was completely shocked at the ADHD and gifted labels.  ADHD has never been on my radar, so it's something that I know very little about.  A quick Google search told me how terrible my life must be because of it and if it hadn't already destroyed my marriage, that was soon to come.  It feels uncomfortable for me to identify as gifted, I think in large part because there is this generally accepted idea in society that it's such a great thing to have a gifted child/be gifted.  Giftedness is one of the few neurological differences that is treated as a good trait, seen positively overall, and even to some, as something you can work hard enough at to achieve.

It's been a month since my diagnosis, and I am still struggling to accept and own the gifted label.  As a child, I was not the smart one.  My sibling was.  I was good at sports.  School was not fun for many reasons and I struggled academically.  There were certain subjects that I did excel at but if it was something I had no interest in, forget it.  My effort was minimal and I had little patience if I was not being taught in a way that made sense to me.  University was a bit better as I could finally hone in on my passion but there are, of course, degree requirements outside of the chosen major and some of those were still a struggle.  I didn't graduate college with honors, although I did well enough by most standards I suppose.  I don't know if I'll ever make peace with this.  My small circle of friends consists of gifted adults.  I still feel a bit intimidated by some of them, intellectually.  I think part of the reason it's hard for me to accept, is that I don't have a highly specialized talent or skill.  I'm not a savant.  I'm not good at math.  I'm a voracious reader, and probably read a few hundred books a year.  That doesn't seem like a big deal to me though.  If time and life circumstances permitted, I could read a few books a day.  I speak three languages, but so what? I guess what it will come down to in the end, is working through my own prejudices of what a gifted person "should" be and also processing through a lifetime of feeling like I was never the smart one in my family of origin. Parents, take heed.  Labels, when used appropriately and accurately can be incredibly liberating. Thrown around carelessly, they can weigh one down for a lifetime.

Learning more about ADHD, I am seeing how it fits who I am.  It's so incredibly wonderful to have a name for everything.  To attach a name to these traits, to know that there are others out there who do exactly the same things as me because we share a neurology is so incredibly liberating and comforting.  I remember as a teenager feeling so alone- don't all teenagers? - and worrying that I belonged in a hospital, because surely, no one "normal" felt the same way I did. There couldn't possibly have been others out there like me.  To learn, as an adult, that not only is there absolutely nothing wrong with me, but these traits have recognized names, and are all part of the neurodiversity of our species is absolutely incredible.  I feel like the weight of the world has been lifted from my shoulders.

Monday, June 15, 2015

A Beginning

Every new adventure has to start somewhere, right?

I've had a few blogs in the past but this one feels more real, more personal.

Earlier this year, I made a profound discovery about myself.  I am Autistic.  An entire lifetime spent thinking I am wrong and bad, always certain that I am different.

Different feels good to me.  Our differences are what make the world such a beautiful place.

This blog will be my thoughts on being a woman diagnosed later in life.

It will be about homeschooling with a leaning towards unschooling.

It will be about finding out who I really am, unearthing decades of myself that I have meticulously and systematically packed away in the interest of fitting in and being "normal".

Pull up a seat.  I'm glad you're here.