Tuesday, May 03, 2016

April Was Autism Awareness Month

I’m going to say it. I just can’t stand the activism that treats Autism like a disease to be “cured” or “eradicated”. My reasons for having a visceral reaction to the language of Autism Awareness organizations that say “Working towards a cure” or similar verbiage start with my daughter, but they don’t end there.

Most parents live in Lake Wobegon when it comes to their kids. Of course we do. Unlike most American parents, though, I labor under no delusional that my child is a “special snowflake” that is somehow the benchmark by which all children before or since should be measured.

She is special, though. And part of what makes her special is her disability. Bear with me while I work this out. See, Autism Spectrum Disorder is considered a disability, specifically a learning disability for purposes of accommodations in the public school system. Thank you, President Clinton for signing the Americans with Disabilities Act in 1990. I was 16 and graduating from high school and had NO idea what that would mean to me as an adult. But it means everything.

Gabriella has Asperger’s Syndrome and Sensory Processing Disorder. And while some people look at it as “not really Autism” or “not as bad as Autism” or any other variation on that theme, it has impacted her life in very profound ways. And like it or not, critics, Asperger’s IS considered on the Autism Spectrum in the DSM. From Wikipedia:

The Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association, offers a common language and standard criteria for the classification of mental disorders.

ASD (Autism Spectrum Disorder) is not technically a “mental disorder”. According to the National Institute of Mental Health, Autism Spectrum Disorder is:

…the name for a group of developmental disorders. ASD includes a wide range, “a spectrum,” of symptoms, skills, and levels of disability.

So where does that put us right now?

Because she is wired differently, she sees the world differently. I like to say that she thinks so far outside the box that the box never existed in the first place. Her mind goes to places that it might not have ever discovered were she “normal”.
She is incredibly talented. Because of her disability, she has the ability to hyperfocus. Her ability to become so engaged with her artwork means she has a mastery that is rarely seen in a young person. It also, sadly, means that other things fall by the wayside. When she gets “in the zone”, you could drop bombs all around her and she would not notice. The uninitiated/unbelievers might say (and have said), “If she could oooonly apply that focus on [insert other thing], she’d do so well in [other thing].”

She is extremely sensitive. She feels things very deeply. Because of her disability, it often takes a huge emotional toll when the after-effects finally come home to roost. To this day, we still deal with the emotional aftermath of her preschool classmate who passed away when a small plane crashed into her house. It happened almost 10 years ago. But she still relives it almost daily. Especially when she gets close to people. She fears that something bad will happen to them, too. At the same time, her ability to feel deeply makes her very sensitive to the plight of others less fortunate. Some kids look at community service as something to be dreaded because it takes time away from “fun” stuff. She gladly will do community service because she cares.

She is incredibly smart even though she struggles with some academic subjects and especially on “assessments”. If you have a conversation with her for any length of time, you will end up impressed by how much she knows (if not her delivery style). Yes, it can take her a while to absorb certain topics, specifically procedure-based subjects, because her brain is wired differently, but once she gets it, it has been got. Permanently. There’s nothing she hasn’t learned that she has forgotten, I promise you.

When I think about all her strengths, even balanced against her weaknesses, that are directly related to her disability, I can’t even comprehend the merest inkling of wanting to “cure” her. Why would I change or eliminate what makes her an amazing human being? What would that say to her?

I’ll tell you what that would say to her:

It would say “You are less-than because you aren’t like everyone else”.
It would say, “You are a mistake”.
It would say, “You are a problem”.

People have equated ASD to other medical conditions like Diabetes in an attempt to get people to understand that saying things like “Why can’t you…” when the action is completely related to their disability and not something they can control easily (if at all). You would no more tell a Diabetic to just “get over” the Diabetes or tell a wheelchair bound individual to just “get up and walk”. But this does a disservice to the individual on the Spectrum.

It equates a neurological condition which can be helped only in certain circumstances (but certainly not ALL) by medication with a condition that is either controllable with medication or mitigated by assistive devices. Right now, the research shows a strong correlation to a genetic link with regard to ASD. It isn’t caused by vaccines. Or diet. Or environment. So please, do me a favor and don’t bring that up. Because when your child is almost a young adult, it’s unhelpful and rude for bystanders to armchair quarterback a woman’s prenatal health. It also makes you look stupid.

You might as well equate ASD with Bubonic Plague. Because that’s how my daughter takes your input. She has been ridiculed by her peers for being “different”. She has been verbally assaulted and told to kill herself to keep her peers from “catching Autism”. When you treat ASD like a disease and use language like “looking for a cure”, THAT is what you get.

New reports that people who commit atrocities who have a diagnosis of some form of ASD also add to the problem. Not every ASD person is going to go on a rampage and shoot up an elementary school. And yet, the first place news reports go is to that place. Then the cries of “Better mental health services” begin. Yes, there is a definite need for better mental health services in this country. But ASD isn’t a mental health issue by itself. ASD often is co-morbid with mental health issues. Depression, Anxiety, and more. Those definitely need to be addressed and treated appropriately.

My daughter is very outspoken and opinionated. Whether that is due to her diagnosis or she’s just like her mama (who learned it from her parents), is up for debate. She has her own voice. She’s incredibly self-aware. You might think that ASD folks aren’t, but you’d be so very wrong. In fact, many ASD folks suffer from anxiety because they are hyper-aware of how different they are and how they don’t fit into a society that caters to the “average”.

She doesn’t have social media because in her words, “I’m not ready for it”, so I’m her online ambassador. At almost 14, that shows a lot of maturity. What follows is from her heart:

She wants you to know that when you are “looking for a cure” what you really mean is that you wish she’d never been born. And by extension you wish that all Autistic people had never been born. Because if you didn’t, you wouldn’t want to change them from who they are.

She wants you to know that just because she is Autistic doesn’t mean she doesn’t have feelings or understand the world around her.

She wants you to know you can’t “catch” Autism any more than you can catch being stupid. (her words, gang, not mine)

She wants you to know that she isn’t “retarded”.

She wants you to know she isn't a mass-murderer in the making.

This is Gabriella.
If you have the courage to say any of the above things (or any variation on those themes) to her, I have a few things I want you to know.

I’m the one that has to console her when she is made to feel less-than.

I’m the one paying for the inpatient mental health facility stays because she was tormented to the point of self-harm due to her disability.

I’m the one who fights the fight to get her the services and accommodations she needs.

I’m the one you will have to go through if you hurt my child.

Because I care about every kid who struggles with the same issues Gabriella faces, that's why it doesn't end with my child. My heart goes out to every child who faces the same discrimination and backlash because of their disability and diagnosis.

For those who have children on the Spectrum who deal with profound Autism behaviors, I feel for you. I know that our struggles compared to yours are merely a drop in the bucket. I know that they are life-altering in ways that I can probably never understand. I know you are doing the best you can. Hang in there.

Thursday, February 25, 2016

Is It Monday Yet?

Or should I just call this #PhilosophyThursday?

Normally I keep my musings for Mondays, but as I was going about the business of morning stuff, thoughts were swirling in my brain, like the #DustHyenas I was sweeping. In case you were wondering what a Dust Hyena is, it's like a Dust Bunny but bigger and nastier.

A photo posted by Nina Suluh (@empressg1973) on

About a year ago, I embarked on the process of decluttering put forth by the titan of tidy, Marie Kondo, in her book "The Life Changing Magic of Tidying Up". I started well but life got in the way, as it is wont to do. 2016 was looming around the bend and I found a Facebook group called the "KonMari 26 Week Challenge" and I dutifully joined because it met all the criteria for my ADHD brain to be able to get back on track. Namely, a set time-frame, a schedule of what to do and when, and The List. The List is broken down by week and gives what must be worked on during that time. There are also a lot of other people just like me, working on the same step at the same time and we are able to share our triumphs and tribble-ations. I belong to a lot of KM groups on Facebook, but this is the most helpful at the place I am right now.

The over-arching aim of the KonMari Method (KM for short) is that if it #SparksJoy, you keep it. If it doesn't, you thank it for its service and send it on its merry way. I've lost track of just how many non #JoySparkers have left my house, but I can safely say it's A LOT. We are NOT hoarders by any stretch of the imagination, but like most Americans, we have a lot of stuff. Just stuff. Stuff I was saving for this or that reason... Stuff I got on sale because it was a good deal... You know the drill.

But here's the kicker... I HATE stuff. Hate it. Loathe it. Abhor it. Detest it. (and no I didn't need a thesaurus for that, lol) Too much stuff kicks my ADHD into overdrive and I spiral into depression. I hate stuff sitting out. I hate knicknacks that aren't behind glass. And yet, much like Saint Paul wrote
What I don’t understand about myself is that I decide one way, but then I act another, doing things I absolutely despise. (Romans 7:15 The Message)
I find myself with STUFF. And it is EVERYWHERE. And so I ceep calm and KonMari on. Part of the concept of the KonMari Method is the idea that the house will tell you when it has reached a "click point". It sounds crazy, but it's true! I'm getting to that part, lol, bear with me.

As I get further into the process of refining my Joy Sparkers, I realize that while I love my dining room and appreciate all the meals around the table we've enjoyed, the guilt for not being able to use it for that purpose in a very long time has been crushing me. And it shouldn't. But yet it has been. Partly because people who shall remain nameless [couhg]my spawn[cough] have complained about it. Well-meaning people have commented on how eating dinner every night at the table brings the family together and blahblahblah.

So here's the deal:

I refuse to feel guilty any more and Imma tell you why in bullet points:

1. I work from home as a fiber artist (I make things out of fabric). That work involves needing a large flat space to lay out, measure and cut the fabric.  Visit my website. #ShamelessPlug

2. My children need a place to do homework. More specifically, my at-risk SPD child needs an area free from siblings with enough space to be tutored by her father. The dining room table fits that bill perfectly.

3. My house is small, but it is almost paid for and I don't feel like shouldering the overhead that an outside facility would cost me. Plus, working from home allows me to be with my kids even when I'm working.

4. My work? Pays for all those nifty things my spawn enjoy doing as extracurriculars. So we can either eat at the table or do fun stuff.

5. Being able to work from home is my #JoySparker (see above). The "click point" came for me when I realized that using my dining room table as part of my work space means more to my family than just eating a meal. It means income for my family that we otherwise wouldn't have.

Don't get me wrong, I LOVE my dining room table. It's a gorgeous piece of furniture. But until and unless I get a dedicated workroom (which I don't see happening any time soon for a variety of reasons), my dining room IS my workroom. And I'm happy with it. If you have an opinion on why I'm wrong or should do something else, you can forward me the approximately $20,000 to build a functioning workspace. You don't have an extra twenty grand laying around? Okay then. Kindly keep your opinions to yourself.

Let me add something else that Sparks Joy for my family: being able to sit together in comfort on the sofa and eat dinner close together while watching our favorite TV shows on Netflix and Hulu. Because dinner time is the only time we're all able to watch TV at all. And being able to share that time means the world to us. We don't have to worry about people's faces being in their phones or tablets because we're too busy watching TV together (it's like MST3K at our house) and stuffing said faces with food made with love by either their dad or myself (but mostly dad because he's a way better cook).

Some of my fondest memories growing up were eating homemade nachos for dinner and watching "CHiPs" or "Buck Rogers in the 25th Century" with my parents. I don't remember many of the meals we ate at the table (and that was the rule for meals), but I remember those times we broke the rules by sitting in the TV room with mom and dad watching TV and eating. And that's probably why I don't feel one shred of guilt about having my kids watch TV while we eat. Because it's not about where you're sitting, it's about who you're with. We're building a shared experience. And that is everything to me.

Thursday, January 21, 2016

lois lane and superman

...or how a fellow Geek Girl and an undergarment most people take for granted changed my life.

First of all, the disclosure: I am not a paid reviewer of any product. If I'm reviewing it, it's because I parted with my hard-earned money to acquire it.

It all started with an Epbot post. Go. Click the link. Read. And then come back here. I'll wait.

Back? Ok. So I read that post when it originally aired back in 2013. I paid it no heed. Learn from my mistakes. Go back and read through all the embeded links. I'll still be here.

Now that you've read the entire post and all the links including the Reddit one on to the good stuff.

I hate shopping for clothes. I've got my reasons, but the clothing I hate shopping for the most are the "unmentionables". I hate it because they never fit right. I always feel worse after a trip to the "fitting room" - a total misnomer by the way since most off-the-rack clothes don't actually fit and there's no one there to fit them to you, but I digress...

I hate bras. With the fire of 10,000 burning suns. I've gone through phases of shopping at Victoria's Secret and being "fitted" there (hahahahahah) and just grabbing whatever utilitarian thing of the rack at Target in an attempt to cover the hoobies. For years, I've gone without and just worn a thick tank top underneath whatever shirt I'm wearing. But some things require a bra and there we are.

I sew clothes for myself and have for quite a while and I was always confused as to why my clothes never fit correctly in the top and I always had to grab 4-6 inches from the back to make everything fit properly. When I finally read through ALL the links in the Epbot post and actually measured myself for a bra, I had an epiphany. The secret is that my underbust is 35" and my actual bust measurement is 44". That is a 9" difference, yo. I should have been making a "full bust adjustment" to my clothes to account for my larger (yet smallish) chest.

So I obeyed my geeky overlord and duly ordered a bra from Brastop.com using my actual measurements converted to UK sizing (I'm a 36F, BTdubs). The first bra I ordered was too small. I went with a 34" band because I'm between sizes. Yeah, nope. FULL of nope. Had to send it back and Brastop and pay return shipping but that's the price you pay for living in the USA and ordering from the UK. The return process was super easy and since the replacement bra was actually less expensive, I got a refund via paypal. Sweet!

I eventually ended up with the Fantasie Lois Side-Support Bra in nude. You can get it here.
from Fantasie's website
That's not me in the picture. I'm not quite that good looking in person but pretty darn close.

Style: It's a bra. I don't know what I expected it to be based on the picture, but when I received it, it looked just a little sad being all flat and stuff (no padding whatsoever in the bra). But who cares what it looks like? It FITS!!!

Fit: This thing fits like a glove. A very supportive glove. The band is 36" and fastening it in the first set of hooks is a perfect fit. Snug without being squeezy. Generally speaking band size affects strap placement. The straps are set very wide on this bra. Which is perfectly fine for me because I have broad shoulders for someone so small (I'm 5'2"). It also means that all the side boobage gets confined in the cups.

Bonus: The center part where the little bow is comes up very high in the center. This is good because it holds my posture erect. I don't know about you, but I tend to slouch a bit and this is like a teeny ruler down the front of my shirt saying "Don't do it, missy!" It also causes me to hold my shoulders down and rolled slightly back - another posture improver.

Overall, I'm thoroughly pleased with this bra. It fits my hard-to-fit boobs. And that was worth the price of admission AND the wait for international shipping.

Friday, January 08, 2016

How To Survive In Jakarta

was not something to which I gave much thought when I boarded my first flight to Soekarno-Hatta International Airport. In fact, "survival" is not something I ever think of when I'm travelling internationally.

My thoughts revolve around seeing amazing things, meeting new friends and generally immersing myself in wherever I happen to be and enjoying the experience to the fullest.

So when this video popped up in my Facebook feed, I was... confused... a little put off... and I'm still trying to quantify what it is that bothers me... Maybe it's because Jakarta is my "home away from home" and I have family there that I love.

When I'm in Jakarta it's because I want to be there, not because I "have to". There have been sad times & happy times, but I never found myself worried about my safety (which as an American I was warned about!) or out of place.

I've travelled around the world and the one place I feel most at home is Jakarta. It's a city of contradictions with slums near shopping centres but also a blossom that is slowly opening to show it's inner beauty. You just need to be able to see it.

I remember Jakarta in 2002 when the canals were so filled with styrofoam trash that rats the size of cats were cavorting on them. I remember the flood that meant we had to leave our home on bamboo rafts. I remember the presidential election of 2014 and the nail-biting vote count that was televised for the entire nation to see.

What I remember most about Jakarta is spending time with my family, shopping on side streets (she has a point about sidewalks!), eating amazing food you can't get anywhere else and just sheer happiness.

Tuesday, January 05, 2016

Yo! 2016...


After 2015, I'm ready for you.

Dear 2015...

This one is for you.

I won't miss you, 2015. You were the hardest year I've ever lived.

We lived through:

  • job loss
  • bullying at school
  • hospitalization in a behavioural health facility (TWICE)
  • insurance issues
  • medication issues
  • elderly family-member being hospitalized twice
  • and more...
I don't ever want to go through it again.

Tuesday, October 27, 2015

It's Not About The Money

But it sure is nice for my better half to be re-employed!

When I went to post on my other blog about my Halloween makeup test-run (Hello, Ursula!) I saw that I hadn't updated this one in months.

So here's the update...

Roughly 3 weeks after being let go from his former employer, he was re-employed, still in the high-tech field, still writing software, but doing something completely different from what he had been doing before (metrology). He took a tiny (really small) paycut, but it's ALL good.

He has a smile on his face coming home from work and is excited about what he does now. And that's something I haven't seen in YEARS.