Saying goodbye to the old me…

It was Easter dinner last night and I had the menu all planned out. The previously frozen tofu was thawed and marinating in pickle brine. All I needed to do was peel and chop potatoes for fries then make the sauce for the broccoli before cutting the veggie into bite sized pieces. Oh and get the fries and broccoli into the oven to bake and dredge the tofu in a garlic powder and flour mixture and fry the tofu…

You get the picture. I’d hoped to make brownies too but I was struggling even with the thought of prepping the tofu. The veggies were overwhelming. So I ended up slicing up a tomato and an orange instead of prepping veggies. That way I wouldn’t end up curled up in the fetal position on the kitchen floor. Been there… done that… don’t want to do it again.

food prepI miss me. I miss the woman who could happily spend the day prepping meals then go on to read or write for a couple of hours. This picture’s from Facebook where I captioned it:

I spent all day cooking! I made apple sauce (apple, cherry, and nectarine sauce to be precise), chocolate pudding, fudgesicles, pizza dough, two different soups (lentil and broccoli-cauliflower), four loaves of banana bread, chocolate covered cherries, spaghetti sauce, almond cheese, and cashew cheese. Now it’s time for me to have a bubble bath, read a book, and relax before bed 

I struggle so much. I had to listen to two songs already just so I could be relaxed enough to write and I’m contemplating watching a third one. So many things I could handle with ease a couple of years ago, I can’t handle now. I get overwhelmed with shopping and will have to apologize to Colin because I just can’t handle one more store and the bus ride home too.

I used to curl up to read and finish (or almost finish) a novel. Now I’m lucky to get through a chapter. And I’m finding sleep getting harder and harder. My heart pounds… I feel short of breath. You’d think I was in a horror movie instead of my own safe bed. The past two days have found me listening to music in my swing chair in the wee hours of the morning, too anxious to sleep. It helps but it means I’m losing about two hours of sleep a night and I’m already needing an early afternoon nap so I can make it to evening.

I have brain fog. So much brain fog. People tell me things and I forget almost immediately, no matter how hard I try to remember them. I forget what I was saying as I’m speaking. I even forget what I’m thinking. I check my calendar multiple times a day, just in case I’m missing something. Sometimes I am and, luckily, I’ve found it before I was late. I signed up for free massages at Carea and completely and utterly forgot about them. Like I had no idea I’d even signed up, in writing, for one session let alone two. It was a pleasant surprise but still disconcerting. I am so thankful for reminder calls and texts.

The old me was lively and outgoing. She cheered people up and customers used to comment that her smile and friendly wave brightened their day. The old me carried around a notebook and wrote novel excerpts on the bus and quickly typed them out at home. The old me could hold a conversation that wasn’t online.

I’ve been autistic my whole life but the depression and anxiety ripped off my masks and I haven’t been able to find them again. I rock and sway regularly, listen to the same songs over and over (and over). Bounce in my swing chair to settle down. I have meltdowns when things aren’t going the way I thought and the world’s suddenly strange and different. Even though it really isn’t, it’s just my perception.

It’s weird to be mourning myself when I’m still here. But, in a way I’m not, there are so many differences between the old me and the new me, it’s like I’m a whole new person. I guess all I can really do is get to learn who the new me is and try to like her.

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Autism support…

People say they love autism. They love changing their profile pictures and banners to “light it up blue”. They love the little puzzle pieces. They love pictures of cute, adorable autistic kids and videos of them behaving properly (ie neurotypically). If you ask them, they’ll tell you that of course they support autistic people. And they do… as long as the autistic person keeps on being “normal”.

Autistic people aren’t “normal”. We rock and flap our hands. We sometimes make strange noises. We get overwhelmed and have meltdowns, which range from standing silent in the corner to screaming and crying. We eat the same thing for weeks… months… years on end and wear the same clothes day after day. We wear headphones in public, even during conversations, and cover our ears when there’s loud noises. We lack mouth filters and sometimes say things that are horribly rude without any idea of such, at least until the berating starts.

And the attitude follows us online too. We get laughed at or yelled at for mistaking a sarcastic meme for a serious one. We have no idea which emoticon to use for complex posts. We get accused of missing the point of posts when we didn’t miss it, we just felt a different point was more important. But our view doesn’t matter because it isn’t “normal”.

We don’t stay sweet, adorable children. We grow up. We’re your strange neighbour who wears the same clothes every day and talks to himself. We’re the person crying on the bus because we’ve done three transfers already and now the bus is stuck in traffic and we just want to be home. We’re the person online who’s trying to be helpful but misunderstood the meme and now looks unsympathetic. We’re the person you’ve known for two years and is “so rude” because we still haven’t learned your name, even though we know your favourite colour and you only said it once a year ago. We’re the person who will. not. stop. talking. about. ducks.

Next time you tell yourself that you support autistic people, change the word autistic to weird, strange, eccentric. Do you accept those people into your life? Because, if you don’t, you’re an autism poster supporter. So stick up that puzzle piece in April, even though autistic people don’t like it, and tell yourself you’re doing your part. But at least try to be honest with yourself. If you don’t support us in all our messy, glorious rainbow of existence, you don’t support autistic people at all.

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Autism Speaks does not speak for me…

In just under three more weeks, Facebook will be awash with blue. Blue banners, blue puzzle pieces, blue lights; all with a message imploring people to think about autism. This campaign has been co-opted by Autism Speaks, an organization dedicated to curing autism.

They see autism as a separate entity, something that clings to their children, slowly destroying them. They see it as something evil, something hellbent on destruction. And they make this obvious in their videos.

The first Autism Awareness month was held in April 1970, the year I was born. Back then autism was seen as something severe that primarily affected boys. Which is why I, as a chatty, albeit socially awkward child, was given the diagnosis of being a square peg instead of receiving one of autism.

It wasn’t until the early 90’s that people started paying more attention to children who weren’t severe enough for the autism label yet were still showing enough symptoms to not be considered average. These children fell under the category of Asperger syndrome (or Asperger’s). This disorder had been recognized by Dr. Hans Asperger back in 1944, the year my Dad was born, but didn’t gain much notice until 1981. It subsequently disappeared in 2013, when aspies got moved under the term “high functioning autism”, a term that is hotly disputed in the autism community.

Colin was born in 1997, six years after Asperger’s was recognized in Canada and the States. Autism was first mentioned briefly by his speech therapist when he was three and his Junior Kindergarten teacher when he was four. Both times I adamantly disagreed. I knew almost nothing about autism and none of it was good. As far as I knew, autism was children who banged their heads on the floor, rocked violently, screamed, and bit and clawed at themselves and others.

Colin was seven years old and in a special education class when my sister mentioned she thought he had autism. She was the third person and by then I had decent high speed internet and a need to find an answer. That was when I discovered autism checklists. I found so many of Colin’s unique quirks in those checklists, enough to make me realize those three people were likely right. Plus more than enough information to realize that my limited knowledge of autism was just that, limited to the most severely affected people. It took over a decade for me to realize I’m on the autism spectrum as well and I didn’t get officially diagnosed until last year.

Both Colin and I are highly verbal and have our own gifts. I’m good at writing and singing while Colin is good with electronics. He installed three ceiling lights in our home after watching his grandfather install one. He’s built and rebuilt several computers. He also has repaired speakers and RC cars. Basically we’re the people who Autism Speaks ignores.

Autism Speaks plays on the fears of parents. They act like autism is some outside, malevolent force out to destroy not only children but their parents’ whole lives. Something to be cured at all costs, even with “voodoun, prayer, and herbs”. Or, as Colin put it, “They make it sound like autism is a big bad meanie. It’s not, it’s just a birth defect.”

Many autistic people see autism as a neurological condition, hardwired into our brains before birth. It’s just as much a part of us as the colour of our eyes or the pigment of our skin. It’s entwined in everything we say and do. For every negative that can be said about autism, there’s a positive. Many autistic people have a special interest, in which they can rival PhD’s for knowledge. We can focus intently on minute details, often noticing things that neurotypicals miss. We are very routine oriented, which is good in many work environments. We are often very empathetic, which is a double edged sword because we can be overwhelmed by empathy to the point where we freeze and people then assume we don’t have empathy at all. Autism Speaks ignores all of this.

Autism Speaks in fact, ignores most people with autism, leaving us voiceless in their cause. Instead they focus on the parents of young children. Parents who are scared and vulnerable. This is a business and the parents are their clients. Autism Speaks CEO made $371,000 in 2013 (the most recent number I could find) and they spent over $52 million dollars in advertising. No wonder they speak so negatively about autism, they need scared parents who will do anything to cure their child. Scared parents with open wallets.

This year, instead of lighting it up blue, paint your page red or #toneitdowntaupe. Look towards ASAN the Autistic Self Advocacy Network instead of Autism Speaks. ASAN is run for, and by, autistic people.

Remember, Autism Speaks, but you don’t have to listen.

My life as it is…

I woke up this morning to discover Jeremy had made me breakfast to eat in my room which is so not typical for them. And, even more surprising, they weren’t dropping hints for anything. Breakfast was edible too. Mega bonus!

I was going to head out to a group called “Bucket Lists and Life’s Adventures” but finished breakfast a bit too late and went for a bike ride with Jeremy instead. It was a beautiful day here in Ontario and absolutely incredible, colour wise…

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So pretty!

“Can you hold my bike?” Jeremy asked when we got back to the front of the building. I nodded and held it steady while they ran inside.

“Only some jerk got mail,” Jeremy said with a laugh as they threw a letter into my bike basket. It was from the Ministry of Community and Social Services. Not to be confused with the Ministry of Magic.

I opened it as soon as we got inside our apartment and the words jumped out at me.

The Disability Adjudication Unit has reviewed your disability and found that you meet the program’s definition of disability.

In most ways this is good. I’ll have money to live off of, a drug card for my bucket of meds, and an discounted bus pass which will give me transportation through the region. But I have to admit that seeing the letter proclaiming I’m disabled was a shock. The word comes with a fair bit of baggage. I’m not sure my stuffed dragon and I can hold it all (it’s a very small dragon).

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Jeremy and I took a break after we got home then my Mom and I took a whole big load of stuff to our local Value Village (pronounced Value Vill-aghe with a slight nose tilt and a bad accent). I had five ficus trees on my balcony but the kittens kept climbing them so I now have two. Plus we got rid of my wicker rocking chair (I can rock well enough without it) and Jeremy’s too small elliptical. We suddenly have living room space!

Today was supposed to be my trip to downtown London, England to ride the London Eye and see Wicked with my ex boyfriend. I’d like to lie and say that the stuff I did today more than made up for the missed trip, but seriously? Today was supposed to be the highlight of what I thought would be an amazing trip and a ride through woods I’ve seen a hundred times and a run to a second hand store doesn’t compare. But, sigh, that was then… another lifetime ago… and this is now. And today was pretty damn good (and came with a delivery of breakfast).

I will not apologize for being me…

Pain is a powerful deterrent. The emotional pain of seeing every adult look over at me with patronizing expressions and knowing nods because, once again, I was doing something that was normal to me and odd to everyone else. The physical pain after school when my classmates ran after me or chased me down on bikes because I was an easy target since I stood out. The humiliation of being ostracized repeatedly because no one else wanted to be tarnished by my presence.

So I shrunk myself small and hid myself close in an attempt to fit… and was still seen as odd.

I married the first person to date me. Years of thinking no one would ever want to date someone as weird as me turned into worries that this would be my only chance at marriage and children. Which is so not a good base for a relationship. Then I had kids and worried that my weirdness would hold them back from making friends. If the parents thought I was too weird, would their children be allowed to come over? And I shrunk even more.

Then came work. I needed a job to raise the kids and needed not to stand out, so I put on the most normal mask I could make and tried to be quiet but productive. I tried my hardest and hid until I could no longer find myself. And I never really noticed. It took a year before I noticed I’d lost interest in reading. Me, who read a book a day for years. I spent a year and a half without writing. I’ve been known to write for 12 hours at a time and carried a notebook and pen with me.

I never noticed when my shrinking turned into apologizing for everything that I did oddly, until I was apologizing for my mere existence. For using the air the more normal people needed to breathe.

I never really noticed until I found myself standing on the ledge to my balcony pondering how long it would take to fall and how quickly the pain would stop. My mask broke then and it’s never going back on again.

I will not apologize for loving bright colours and glitter
I will not apologize for loving stuffed animals and butterflies and rainbows
I will not apologize for hand flapping
I will not apologize for squeeing when I’m happy
I will not apologize for singing (yes, even in the grocery store)
I will not apologize for caring
I will not apologize for my thoughts being a step off from expectations

If I continue to apologize for being born autistic in a neurotypical world what am I teaching my autistic offspring? I’ve told my kids for years that, as long as I pay my bills, it doesn’t matter how weird I act. It’s time for me to believe that. My life depends on me believing that.

hand drawn daisy

I drew this at the hospital. The perspective’s not the best but I also haven’t drawn anything in twenty-five years.

So I’m reconnecting with myself. Writing poetry, reading, scrapbooking, sketching, and editing my novel. I’m singing again. To Jeremy, to the cats, and most of all to me.

Tomorrow I have errands to run, appointments to attend, and a cake to decorate. Then Jeremy and I are joining my parents for a family camping trip. I’m going to be 100% myself, even in front of the rest of the family. It will be fabulous!

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Audition

When do I smile?
Is that my mark on the floor?
The lights are too bright
I can’t see the expressions on the faces judging me.

My lines are jumbled
They don’t seem to fit the dialogue
Maybe my script was dropped?
There’s no numbers on the pages.

My voice is too soft
The director can’t hear me
Even the people in the front are complaining.

I’m failing at the audition for my life.

Battling depression…

Today has been one of the hardest days of my life. I told the truth. It’s not that I’m a chronic liar, it’s just that I don’t tell people anything. Telling people things hurts, it makes me feel exposed, and I’d rather just curl up in a ball and hide. But depression doesn’t wander off, it hides right along beside me, whispering in my ears… telling me how worthless I am and how everyone would be better off without me.

L convinced me to tell people and I sat at my computer this morning, still crying, and wrote a heartfelt message about how I felt. It was messy, ugly, and the truth. I figured people would think I was whining for attention. So many people have it worse. But people listened.

Karen listened. She called me from work and drove me to the hospital, where she sat beside me for hours, while I told the truth and explained over and over, how badly I’m eating and sleeping and exactly how I was planning to die. Then my Mom took over because I wasn’t supposed to be left alone and she held my hand while we waited more. I finally saw a psychiatrist, who’s taking me as an emergency patient, and I’m staying with my parents for a few days. I don’t fly. No one wants me near the balcony. I don’t want me near my balcony either, at least not until my meds increase.

Depression lies. I thought my family didn’t want me around. The truth is I get overwhelmed in crowds and scroll on Facebook or talk to Lenny to calm down. They saw me hiding in the corner on my phone and figured I didn’t want to be around them.

I’ve had a headache for several days and am not at my best. I’m fuzzy headed and forgetful and exhausted. But I’m here and I’m safe for a few days and hopefully I’ll get better. I’m so tired of grey.