Positive reinforcement isn’t positive…

plus signI play a game called Redecor on my phone. It’s a fun and relaxing game. They post colourless rooms and you need to “colour them in” with various materials such as fabrics, tiles, and wood. Then everyone is organized into groups of ten, we all can vote for which room we like the best (two at a time), and finally the top three people win prizes and we move onto the next room. Simple right?

Not so simple. I was fine with decorating the rooms and love choosing the colours and the materials (I’m absolutely in love with the Caribbean upholstery and the Peacock sequin cushions). It’s great hanging out in the Facebook groups too. And a friend of mine (the one I sing karaoke with) plays it too so that’s great. No, it was the easy peasy room judging that left me doing my breathing exercises and reassuring myself and I couldn’t figure out why.

First I’ll quickly explain how the judging works. You click on the judging and are shunted into two options. The first has you judge five sets of one current room (10 rooms in all). You see two rooms, no identifying information, and then you choose. Once you choose you see the same rooms but with the people’s screen names, the level they’ve completed this season, and their current score (out of five). The second has you judge ten sets of ten “design duel” rooms (so 20 in all). Everything else is the same except you see their score by percentage. Also, after you vote you get a prize, kind of a “thank you for voting” thing. It’s usually $75 for for first option and $150 for the second but I find you can get quite a bit more between 8 and 9pm. That being said, there’s nothing overtly scary about the judging. No punishments, you can’t vote “wrong”, it’s just a game. And I like flipping through and seeing all the pictures, at least until my chest starts tightening and it gets hard to breathe.

I think I inadvertently loosened something recently. I’m in a Storytelling group run by a mental health organization and, while my story about explaining non binary to Colin was well liked, everyone else dealt with big issues that had big feelings. So I thought that maybe I could talk about my early school years. I don’t know why. I’ve blocked most of those memories away then deadbolted them shut. But I thought… maybe??? And I remembered myself standing on a stout pipe that stuck out of the school, watching all the other kids playing together and wondering how they decided to be friends. Then I picked out one girl who looked friendly and a bit like me and went over to ask her… in front of her friends… and I mentioned that I thought we looked alike. I just remember the stunned disbelief and the laughter. I don’t remember what was said but it was enough to send me slinking back to the pipe. Enough that the next time I made friends with someone at that school, it was a tree.

But that memory was enough. I was sitting at the kitchen table late this morning and flipped the game over to judging. Soon the panic began to build but, this time, I could hear myself instead of just staticky panic.

C’mon Kath, you need to pick right. You need to pick the right one or else they’re going to take your reward away.

And, as soon as the word “reward” hit, I knew exactly what was going on. The reward is why positive reinforcement is supposed to be so good. There’s no punishment, you’re simply rewarding for good behaviour. Really? You ask a child who was promised a chocolate bar if they washed the dishes then missed a dish and didn’t get the chocolate bar if that’s a reward or a punishment. The child knows about the reward, it’s not a magical surprise that happens later, so if they don’t get it they know that too.

I find myself trying to pick the right rooms so I’m voting with everyone else so I don’t get stuck voting the wrong way. There isn’t a right way or wrong way in the game. And I’m often stymied by the lack of rules. People say beige and one pattern is the way to go and then someone will make a room with three bright colours and just as many patterns and get a great score. Then I end up blindly guessing until I recollect myself and assure myself that it’s alright to pick the room I like, that’s exactly what I’m supposed to be doing.

When I was a little girl I had undiagnosed autism, ADD, and dyscalculia. My coordination was horrible. I struggled to hold a pencil. I was also incredibly bright, talkative, and wrote well enough that the teachers were passing my stories around in the lunchroom because they were so cute and enjoyable. Basically I was a mixed bag and needed help. I also needed someone to realize I was trying and not dawdling around and daydreaming on purpose and my numbers didn’t drift because I was lazy. All kids want to do well and please the adults around them, if it’s not happening, we need to sort it out. I don’t know how, I just know that positive reinforcement isn’t the way.

The adults around me were trying to teach me but the way they were trying wasn’t working. I wasn’t getting it. That, to them, meant I wasn’t trying hard enough (note they never wondered about their own teaching skills). So, since I must know the subject since I’d been taught it enough, I was given assignments with positive reinforcements to encourage me. And what do you do when you know you have to answer like everyone else but have no idea what to do? When you have to answer no matter what? You guess of course. And I was left panicked because if I didn’t guess correctly I was going to lose my reward, through absolutely no fault of my own, even though I was trying to the best of my ability, because the adults around me couldn’t find a different way to teach me.

Forty-three years later and it’s still strong enough to trigger anxiety attacks. Don’t tell me positive reinforcement is positive.

Changes…

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It started drizzling and just didn’t let up. Meanwhile the temperature hovered around the freezing point. I made sure we had several big bottles of water, put spaghetti sauce in the crockpot (thanks Facebook memories for reminding me), and checked our flashlights and candles. Colin, who’s usually planning worst case scenarios for every storm, was scornful.

“Nothing’s going to happen Mom,” he muttered… more than once.

And he was right, kind of. Nothing happened to us at all. Our lights didn’t even flicker. But our block was the only one with power for at least an eight block radius; a tiny dab of light in a sea of black. And, during all that drizzle and wondering what was going to happen, I began to write.

I had thought about writing a blog for a while at that point. I knew Colin was questioning his sexual orientation and gender presentation but everything I could find was about children, there was nothing talking about raising a gender creative teen. That definitely was a niche that needed filling.

I got busy and set up the whole blog then wrote the first post, all without telling Colin. At first he did not want me to write the blog at all then I read him the post and he immediately changed his mind. He thought the blog sounded good but no face shots and no real names. We used artfully posed shots and pseudonyms for years.

And now it’s been seven years exactly. I can’t believe how much has changed since then. We’d only been living in North Oshawa for a year when I started. Now I’m living east of Oshawa and Colin’s north of Toronto… and we have been for almost a year. Colin was in grade 10 and he’s been out of high school with his “certificate of completion” for several years now. I was working at Tim Hortons but then became suicidal and crashed in 2016. I’ve since been diagnosed with major depressive disorder, severe anxiety, autism, ADD, and agoraphobia. I’m on disability. Colin went from being gender non-binary to female for two years. Then he found out he’d lose his fertility on hormones (and we couldn’t afford a sperm bank) so he went back to being male. Well as male as you can be when you only detransitioned for fertility reasons. And I’ve since discovered that I’m asexual and this close to being aromantic by being demiromantic. I’m finding I’m way more interested in women than men but that could simply be because I only have female friends at the moment.

Colin and I croppedWe’re heading into the 8th year of the blog. Instead of being a working single Mom I’m a disabled Granny. My visits with Colin are via Facebook video chats and are as pleasantly mundane as could be. I’ve seen his freshly shoveled deck and watched him scramble eggs. This year I’m hoping to focus more on helping me thrive… or at the very least to stop rating 7 and 8 out of 10 on the depression and anxiety scales. Small attainable goals. I’m sure I’ll succeed.

I won’t be writing again until after Christmas so I’d like to take this time to hope you have the best holiday ever, whether it’s in the past or yet to come, and that 2021 is peaceful, kind, and joyous!

No such thing as a Special Interest…

I found LEDsColin was young when he came to me, still in elementary school.

“I just understand computers,” he earnestly explained. “I speak their language.”

And it certainly seemed like he did. He began practicing on every electronic device he could find. There were a few failures but there were also plenty of successes. Before we moved into separate apartments he built me a computer from the ground up, the one I’m currently using. And he’s built quite a few of his own. Computers are his love… his dream… his hobby… his passion… his drive… and his future. The voice of the computer is his muse. And, to professionals, it’s his special interest.

That phrase is one of the most demeaning phrases I know. It turns far reaching knowledge and skill into nothing more than a weird autistic parlour trick. It diminishes it down to child’s play, akin to a tea party with your dollies or rolling around on the floor with toy cars.

You could find two people, both equally well versed in Egyptology. One neurotypical and the other autistic. The first would be considered an amateur historian and respected for their knowledge while the second would be treated like a toy poodle dancing on its hind legs for treats.

“That’s interesting about Hatshepsut. Now why don’t you go get a snack.”

I read an article a few months ago about a teacher who loved chess. It was his favourite game and he was quite good at it too. He started up a chess club for the students and helped them learn how to play too. The other teachers were not only impressed with his skill but with how well he could get the children involved and understanding the concepts behind the game. He changed schools the following year. Same position… same type of class… and he started a chess club there as well. But this school knew he was autistic. Suddenly his skills and talents meant nothing, seen more akin to a parrot singing words for crackers than a human working with a gift.

I’ve written (and self published) two novels so far. I love writing. I love finding just that exact right turn of phrase. I love when suddenly everything clicks and the words just start pouring out. But I’m pragmatic and realize that much of the time is spent staring at the screen or my keyboard while I try to think of a bridge between paragraphs or how to phrase what comes next. It’s certainly not easy and sometimes it isn’t even enjoyable, but it’s worth it. If someone told me that was my special interest it would a) make me feel like I’d been writing a story on primary school paper with one of those fat red pencils and b) absolutely infuriate me.

If my years of writing is a special interest then every other writer out there should be considered to have a special interest too. If Colin’s interest and skills with computers is a special interest then every single computer repair person out there has a special interest. It needs to work both ways. We are all people, we all have goals, skills, and talents. We all have interests. Let’s drop the insulting special and move on. We’ll undoubtedly learn something.

Happy birthday Colin!!!

Twenty-three years ago, in the middle of a thunderstorm, I gave birth to a chubby 9lbs 11oz baby who looked remarkably like Winston Churchill. I resisted a sudden urge to name him Winston (probably for the best) and named him Colin. Time went on, as it does, and he grew and continued to grow quite a bit beyond what I thought was necessary. He thought his height was great and proceeded to call me his “pocket sized Mom”.

When you get right down to it you go into the hospital and, after a lot of pushing and pain, you’re handed a baby. There’s all sorts of advice for what to do when they’re babies and toddlers and when they’re talking back in elementary school but a dearth of information on what happens once those babies are gone and moved out. I think today, going to Colin’s place, it really hit me that my children, the skippers on sidewalks and hunters of ladybugs, have well and truly left the nest and built homes of their owns. I’m so happy for them but I hope I’ll still have family dinners and visits for years to come.

Today was the first day visiting Colin at his new place, which is right out in the middle of nowhere, a very lovely nowhere by the way, I love what they did with the place. Colin was happy to see us and thoroughly enjoyed his lunch and his presents. As always, it was over too quickly but hopefully we can stay longer next time.

Colin opening present1

Colin opening one of his presents. I believe this one was pjs

Colin and my card

Colin reading the card from me

Dad, Colin, and Mom

Colin and my parents

Colin and I close

Colin and I

A covid conundrum…

Colin and Chinese foodI got a call from Colin’s case worker yesterday. The good news is he really, truly should be moving on April 30th. The bad news is they need his banking information. He can’t give them the banking information. He can read a bit but he can’t write and he doesn’t have any internet right now. His banking information is all online. That means he needs to come here.

I know the strict guidelines for covid-19. Stay home… stay safe. And allow no one inside your home except immediate family members, the ones you’re already living with. Having a special needs child makes that difficult, if not impossible.

Colin’s not supposed to be living on his own right now. I moved at the beginning of February and he was supposed to move within a couple of weeks after me. We gave notice to the building and booked the moving elevator. Then came covid and both were cancelled… then and again at the end of March. Colin’s supposed to be living in a group home with six hours of support a day. Not sitting by himself in an almost empty apartment. Everyone has been telling him to stay home. To only shop when necessary. He still goes to Dollarama and Metro every single day to window shop. He still asks me almost every day when we’re going to visit. Can he come over soon? We’d been living together before, he doesn’t understand why we can’t see each other now.

So he came over once for Chinese food and to download some videos to watch when he’s all alone. And I went over to make sure he was keeping up the apartment to the best of his abilities. Then we went grocery shopping together, with me stressing we had to stay 6ft apart. And now he’s coming tomorrow.

I’m looking forward to seeing him and sharing pizza tomorrow but I can’t help but worry that I’m putting him in danger (or he’s putting me in danger). It’s not like covid-19 has a neon sign. I’ve got soap and Lysol wipes so we’ll muddle through as best we can. Having a special needs child is hard and covid’s made it so much harder.

I don’t know when I’m going to see him again after this. He’ll be moving (fingers crossed) in a couple of weeks and will be at least one hour’s drive away. But he’ll have his own apartment and loads of support. It’s just getting him to that point.

Making my way through the day…

20200219_100235_hdrMy apartment is quiet. Sun streams though the windows while I eat an orange left over from breakfast. The cats all look so very peaceful. Angel’s curled up to sleep while Lara grooms Blackie. Smudge, my more active kitty, is playing with a cat toy and Oreo’s sleeping on my mini trampoline. My apartment is the epitome of peacefulness. So why am I so anxious?

Anxiety, to me, is like an unwanted house guest that sneaks in and refuses to leave. It lays heavy in my stomach and reaches up to squeeze my lungs. Thank goodness for cats. Smudge just jumped into my arms and started purring and demanding head and neck scritches. I’m not back to normal but I am a lot calmer than I was when I started writing. And gently rocking never hurt anyone.

I am doing all the right things to keep anxiety at bay. My home is spotless. I try to cook the healthiest meals I can, depending on anxiety and depression levels. I go out for walks. I even found a walking buddy. But it still lingers.

I wish I had some amazing twist to add here, some cure-all for depression and anxiety, but I don’t. I take my medication faithfully, make sure I get out of the apartment on a regular basis, and still it lingers.

I guess, all I can say is to try and enjoy your life as best you can, despite your diagnosis. Enjoy the little things like the purring of kittens or the fresh new buds of spring. The big things are few and far between while the little things happen several times a day. And remember, on the worst days, that depth of anxiety and depression will not last. Be gentle with yourself and wait for it to pass, like diving under a wave. Let it flow over you and wash away. And with that, even though I’d much rather curl up in my swing chair, I’m going to track down a doctor then head out for a walk.

I hope you have a good day too!

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.

special interest

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.

Employable Me…

Are any of you neurodiverse and looking for a job in the United States? Do you have skills that are overlooked by the workforce? If so, I might have an opportunity for you.

Optomen Productions, a company that produces such shows as Food Network, Travel Channel, Nat Geo Wild, Animal Planet, Investigation Discovery and Bravo is making a new program called Employable Me. They want to find people on the autism spectrum or with Tourettes and help them uncover hidden talents that will land them jobs. They have a preview here, sadly it doesn’t work in Canada but hopefully it will work for you.

If this opportunity interests you, you can contact Liz Alderman at Liz.Alderman@OptomenUSA.com.

Good luck! If you do get accepted, please feel free to message me. I’d love to know.