Time and Tide

I like to tell my children two facts to dazzle them with proof of my advancing years:

1. I was born (slightly) before humans went to the moon, and;

2. Three-quarters of my life (and most of its most significant events) came before social media. 

Of these two facts, it’s the latter that my kids find most shocking, because a life without social media — without a digital trail of your every move, just a click away— feels more alien to them than a trip to space.

Most of the hard proof of my existence is analog, not digital. It’s photos and memorabilia, and it’s scarce and scattered. It’s shoved, out of order, into photo albums and shoeboxes and slide carousels. It’s hidden in cupboards and cabinets and basements. It’s gathering dust in mysterious undeveloped rolls of film in a junk drawer. It’s falling out of yearbooks, along with pressed flowers and notes whose importance I’ve forgotten (although they were important enough for 16-year-old me to keep them forever, certain that middle-aged me would remember and be impressed). 

It’s easy to ignore analog memories. Don’t want to think about it? Don’t look at it. Hide that photo. Pack away the yearbook. If I don’t think of them, the memories stay hidden and unconfronted. Many exist nowhere but in my mind. And memories, I’m all too aware, are tenuous things. Keep them hidden too long, and they may well fade or get lost forever…much like an old Polaroid fades, its image slipping away.

The digital world, though, doesn’t let things slip away. We trip over the memories it throws in our path, unbidden and out of context. It’s not the shoebox hidden under the bed; it’s Pandora’s Box opened in front of the world.

I was reminded of this last week when Facebook showed me what I was doing eleven years ago. Memories from that far back don’t usually pop up in my timeline; back in my early social media days, I didn’t post much, unless it was something really important. And this had been important: my parents’ 50th wedding anniversary. We’d spent it at White Point Beach Resort on Nova Scotia’s south shore. The early October days had been warm enough for my kids, then just two and four, to play in the ocean. My parents happily spent hours with them on the beach, sharing stories and making memories. 

The picture that popped up in my timeline was sweet: a photo of the two most important females in my life — my mother and my daughter — walking on the sand, backs to the camera, marching purposefully toward an adventure. In this photo, Daisy is a lively little strawberry-blond girl whose biggest problem in life is figuring out which Disney princess is her favourite. She is walking next to my mother: a tall, vibrant redhead, intently telling Daisy stories and secrets.

The photo took my breath away. It took me by the shoulders and forced me to acknowledge how much things have changed in eleven years. When it popped into my timeline, I’d just returned from visiting my parents for their 61st wedding anniversary. When I visit my mother these days, I note the repetition, the lost memories, the uncertain questions about how old Daisy and Puck are and what they are doing. I notice that my parents’ house is not as well cared for as it used to be, and that my mother doesn’t want to leave the house, at all. I see that the brilliant red hair is faded to silver-streaked copper.  I note all these things, but I hold them at arms-length. I don’t’ look at them too closely. She is, I tell myself, 81. We are all getting older. That’s all it is. Nothing has changed, so much.

But this photo. More than anything in the last five years, it’s forced me to look at what’s happened to her – to us. Even more than that time, five years ago, when my parents were going away and she showed up at my house with twelve loaves of half-eaten, partly-moldy bread for ‘safekeeping’. Even more than two Christmases ago, when she gave 12-year-old Daisy a size 4T sweater.  Even more than the several times she’s confused me with her late sister-in-law, calling me by her name and giving me the cold shoulder because they never got along well.

This photo forces me to look at the before and after. I am jolted by the realization of how much she’s failed in just eleven years, how quickly dementia has pulled at the threads of both her mental and physical self, loosening the weave that held her together. She is a faded Polaroid of who she once was. I am struck by how willfully I haven’t looked at it.

I show the photo to Daisy, asking her if she remembers that day. She cocks her head to the side and thinks.

‘I remember getting in bed with Nana and Papa early in the morning,” she tells me. “Papa was snoring. But Nana told me stories. She told me the story of little Red Riding Hood.”

I smile, picturing my redheads sharing that story in the dawn hours.

Daisy wrinkles her nose at the photo. “I was all in pink,” she says. “I was such a girly-girl.”

Daisy sees little in common with the tiny girl on the beach. She doesn’t like pink anymore. She’s known for a while that she’d rather find a princess than a prince. She barely recognizes herself in the photo. I, though, see her, still. I will always recognize her, as my soul recognized her’s the first time I held her and looked into her eyes. She’s the same, though grown. The photo shows her walking eagerly toward adventure. She’s well on the path, now.

Daisy doesn’t recognize my mother, either. She doesn’t really remember a time when my mother was lively and ready to go for walks and adventures. She only remembers the more fragile, uncertain grandmother.

My mother, too, is still there, although it’s harder to recognize her. As the bright red hair fades, I feel her essence is fading, too. Who she was in this photo is disappearing like a footprint in the sand. It’s only the memories that will preserve the way she was. I’ve been hesitant to look at those memories. I see now that I have to look and to remember before it all fades – before time and tide shift it all, and rub it out altogether.

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Grey sky. Bright leaves.

Are you as exhausted as me?

This week has been HARD. I should know to stay away from the news. But I couldn’t. I kept watching, even while a sexual assault survivor was mocked, the whole world became more hostile, and anger and pain seeped out of every social media channel I checked into.

I felt frayed. Every cell in me felt shrill, like I was screaming from deep inside and no one could hear me (or no one would listen). My eyes burned with tears that wouldn’t fall. My head ached. I think a lot of women felt like that, this week. 

That would have been more than enough, frankly. But I was also struggling personally this week. I had a child in crisis (not the usual child, either) and felt like a failure as a parent. I had a mother who couldn’t remember that I’d called already, who hinted I was a failure as a daughter. I was trying to move on from a job I’d left, with suggestions that I hadn’t done enough.

Messages of failure, all around.

I wanted to crawl into my bed and hide. But I couldn’t. My husband was away, my kids needed me, and life had to go on. I had to be the adult, even though I felt like I’d failed at being an adult.

By mid-week, I felt alone. I felt unloved. I felt (as many of us do) tired of fighting the same fight, over and over again. I felt lost. I had nothing more to give.

What pulled me through? Not self-care. Not bubble baths or meditation. This was beyond that, frankly.

What pulled me through was other people, and gratitude. Messages of love, all around.

All it took were a few messages. A few people who checked in to see how I was doing. People I haven’t heard from in a long time, but who, I was so happy to know, still thought about me. 

Never underestimate the power that has.

If you are thinking about someone, tell them. A simple email or text asking someone how they’re doing can make all the difference in the world to someone who feels alone and is struggling. It’s those delicate but strong little spider webs of connection that can hold us in place. I needed to know, this week, that someone saw me; that someone heard me. I needed to know, this week, that someone thought about me fondly. I needed to know I mattered.

Knowing that other people care about us can help us to care for ourselves. These messages of care lit a match in my darkness. They showed me I wasn’t alone, and that there was a path in front of me. They pulled me to my feet and gave me the energy to keep going.

I often hear it said that we can’t be loved until we love ourselves. There is truth in that, to be sure. But love doesn’t happen in a vacuum. We need to know we matter. We need to know there is a place for us, and that someone sees us. Connection is a huge determinant of health. None of us can do this journey alone.

That doesn’t mean having a huge friends list or a non-stop social life. It can mean a connection to one or two people who really see you. It means connecting to people who see your value and your flaws and care for you, just the same. It means connection to people who, ultimately, allow you to not be strong or have a perfect image all the time. This gives us permission to not be strong all the time. Sometimes, like this week, we just can’t.

It’s Thanksgiving, and all through this rotten week, I was also reminded that I’m supposed to be grateful. It sounds trite when you’re feeling really low, but finding even small, mundane things to be grateful for can help make the flame that lights our way a little brighter. Even with all the crap in the world and in my life, there is still gratitude:

I’m grateful that my kids are able and willing to open up to me about what they’re experiencing.

I’m grateful for new beginnings.

I’m grateful for the courage to revisit paths that are important to me but that I’ve strayed from. I’m also grateful for the courage to step onto a completely new, somewhat surprising and completely different path — one I’m going to travel simply because it can bring others joy.

I’m grateful for my cats.

I’m grateful for friends, especially those I thought I’d lost.

I’m grateful for the brilliantly coloured leaves that flare against this morning’s grey sky, reminding me that there is hope in the bleakest moments, and that change can be beautiful.

What are you giving thanks for?

Cold milk, warm cookies, & magic.

Every evening after supper, my son and I take the dog for a walk. And every evening on our walk, we have the same conversation – one of us will ask the other, “If you were at Disney right now, what would you be doing?”

No matter how hard his day was at school, or how intense his anxiety and depression, talking about Disney brightens Puck’s mood. His face animates as he tells me which park he’d be in, and which ride or attraction he’d visit. We talk about which restaurants we’d go to, and which treats we wish we could eat right now (Mickey bars and Mickey waffles are two of our favourites). We imagine which resort we’d be staying at, in which type of room. We even reminisce fondly about the Orlando airport, or the beautiful boat ride from Port Orleans French Quarters to Disney Springs. By the time the walk is over, we’re both feeling happier and have planned out a whole day’s activities for a vacation we aren’t even planning to take any time soon. And we’ll do it all over again the next night.

IMG_0170Yes, we are one of *those* families. We’ve been to Disney – a lot. We’ve been on a Disney cruise. We’ve gone on other vacations as a family, too, but it’s Disney that holds our hearts.  I’ve been fortunate to travel a fair bit. I’ve been (and lived) from coast to coast in Canada, and I’ve traveled throughout the United States. I’ve traveled to several islands in the Caribbean, and several countries in Europe. But it’s Disney that we keep returning to as a family. Some people don’t get it, and question why we go back over and over. It certainly wasn’t what I had planned. I was going to show my kids the whole world. But for us, Disney provides a dependable happiness and a retreat from reality that we haven’t found anywhere else. The rest of the world can wait. We’re searching for a world of magic.

Don’t get me wrong: my history of vacationing at Disney is not one of perfect family time or unbridled joy. We are not the happy family you see in commercials. Each trip has come with its own challenges, but also lessons. As a teen, I traveled with a mother who actually didn’t like Disney at all, and a father who wasn’t keen on most rides. I learned to appreciate everything else the parks have to offer. My first trip with children of my own was as an extended family. At the time, my father-in-law was in the early stages of dementia and was confused and prone to getting lost. My mother-in-law was recovering from a hip replacement but in her typical no-nonsense fashion, refused any help. I learned to slow down and not try to do everything. 

Other trips have been planned to balance my daughter’s “let’s do everything!” style with the ups and downs of Puck’s constellation of challenges. Sometimes, sounds were a problem for him, so we learned which attractions or places to avoid. On other trips, it was the crowds, so we learned where to watch fireworks in a less intense setting.

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Tinkerbell and Daisy in a deep fairy discussion.

Although we used a travel agent for our first two trips, I quickly became an expert at doing the planning on my own, focussing on my family’s special needs. I learned what Disney had available to help us, and created detailed itineraries that helped Puck understand what was going to happen each day, while still giving us the flexibility to have fun. I learned how to help Daisy do the things that would make magical memories while keeping Puck happy and calm.

We go back because even though Disney can be a non-stop, intense destination, it actually does a lot to cater to families like ours. Never was this more clear than on our last trip. My father-in-law’s dementia has worsened to the point where it is impossible for him and my mother-in-law to travel on their own. We knew it would be hard, but we wanted to take one last big trip together, as a family. 

I was so hesitant. I knew caring for him and my mother-in-law (who is game for anything, although frailer than she’d admit) on a cruise and then at Walt Disney World was going to be a challenge. On top of that, we had our own kids to think about – including Puck, who would turn 12 on the trip, and who had been having a terrible year with clinical depression and anxiety. I honestly didn’t know what to expect. Even though a dear friend and Disney travel specialist helped plan the details of the trip for us, I had very low expectations.

We didn’t get off to a good start. Puck’s anxiety about leaving his routine kicked in at the airport, and he was in the bathroom being sick right up until our flight boarded. My father-in-law had no idea why we were on a plane or where we were going. We spent the five hours of travel explaining to him, every ten minutes or so, that we were all going on a vacation together. 

Everyone was tense.  I was sure we’d made a big mistake.

We were leaving on a cruise the next day. But first, we’d have a night at a Disney resort. We got settled in our rooms and headed to the Magic Kingdom for the evening. My father-in-law had been agitated and confused, asking repeatedly where we were. Puck was weak and anxious from being sick and was popping ginger tablets like candy. The rest of us were tired and a bit defeated, feeling certain the trip was going to be a disaster. 

But when we got off the bus, got everyone through security, and walked onto Main Street, everything changed.

My father-in-law stopped and stared at the castle in the distance. “Oh!” he said, a big smile spreading across his face. “We’re at Disney!”. And he proceeded to tell us stories from visits 40 years earlier, when he’d gone there with his young children. He could remember those trips in detail, and while sitting on Pirates of the Caribbean, he marveled at how things were just as he’d remembered. He grabbed Puck’s arm and said, “Oh, the jail scene with the dog is coming up next!”

He couldn’t remember how we got to Florida or why, exactly, we were there, but somehow, he remembered what scene was coming up in a ride he hadn’t been on in years. He was smiling and relaxed and having fun — something that happens too little, these days. 

Puck, too, changed as soon as we were in the Magic Kingdom. The anxiety melted as he saw familiar sites he loves. Puck’s challenges make him a bit less mature than his age would suggest, but that doesn’t matter at Disney. Everyone – even me, who was just turning 49 — can be a child. There is no pressure to be mature, and no one judges you for acting like an excited child. He can act younger than his age. I (a grown woman) can get excited to the point of tears over hugging Eeyore. It’s all good.

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You’re never too old to hug Pooh bear.

Later that night, when we got back to our resort, my father-in-law wanted a ‘bed snack’. We went to the quick service restaurant, and my mother-in-law chose some cookies for him. At the cash register, my father-in-law became distraught: he couldn’t eat cookies without milk, he wailed. He was on the verge of tears. My mother-in-law panicked; she didn’t know where the milk was, and she couldn’t leave my father-in-law to go look. She was worried about him making a scene, and not being able to calm him down. The cashier came to the rescue.

“Of course you need milk!” she assured him. “You can’t eat cookies without milk! Let me get you some.” 

My mother-in-law was fretting, though, because she hadn’t brought enough cash for milk (and didn’t understand she could charge things to her room).  The cashier waved off her concern.

“Don’t worry about the milk,” she told her. “It’s a gift from Mickey. He wants Mister to enjoy his milk and cookies.”

When my mother-in-law told me this,  we both cried. She didn’t remember the name of the cashier, so I went to the front desk and thanked asked them to thank the restaurant staff for their kindness.

When we got on the cruise, warm cookies and a glass of milk were magically brought to my in-laws’ room every night at bedtime. Screen Shot 2018-09-29 at 11.52.44 AM.png

THAT’s why we keep going back to Disney. 

Yes, it can be a crazy, overwhelming place, but even for a family like ours (with proper planning) it can be the best vacation you’ve ever had, with people who work so hard to make magic for you. For families like mine — with parents exhausted from trying to manage and micro-manage every detail of the day, who have come to expect that people will not understand, will judge, or will let you down — this is amazing. That’s why my son and I talk about it every night when we’re walking the dog. It’s an escape, to be sure, but it’s also familiar and warm. It’s a place where burdened adults can be children, even just for a while, and where children who sometimes don’t feel confident can discover they are actually brave enough to ride Splash Mountain. 

Even though we talk and plan every day, it’s not likely we’ll be going back anytime soon (our finances don’t stretch to that, at the moment). But still, we dream. We talk. I help other people plan their vacations and live vicariously through them. In fact, I’ve actually thought about becoming a Disney vacation planner, so that I can help other families with special needs realize that spending time together on such a trip is not logistically impossible. I’ve done a lot of work in my life to improve services for people with special needs and mental health issues on a policy level. Maybe I could also create some magic for people at a family level. 

Families like mine need some cold milk, warm cookies, and a heaping serving of magic to keep going. Really, these days, we all do.

10 Mental Health Tips I Learned from my Cats

When I was living on the other side of the country in my early 20s, far removed from friends and family, my boyfriend gave me a little grey kitten. I named him Eeyore (the kitten, not the boyfriend). The boyfriend only lasted two more years, but Eeyore was a constant for almost 15 years. He traveled across the country with me, from British Columbia to Nova Scotia, and honestly, he never really forgave me for it. 

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Little Eeyore on the Prairie.

Eeyore also traveled with me on my journey to recovery from an eating disorder. Do I sound like a loser if I say Eeyore was my best friend during this time? Well, he was. He was with me in the middle of the night, giving me head butts and chin nibbles when I’d wake up in a panic. He listened to my semi-coherent ramblings as I tried to sort out feelings between (or because of) therapy appointments. He comforted without judgment when I cried or struggled to make myself eat. He was by my side as I eventually grew healthier, married, and had babies. He always looked out for me. One of my clearest memories of being in labour with my daughter is being in the bathtub, working through contractions, while Eeyore sat in the bathroom door, growling protectively and refusing to allow either my husband or the doula into the room. He’d occasionally look over his shoulder at me, making sure I was okay, as if to say, “Don’t worry, I’ve got this.”

I’ve shared my life with a succession of cats since I was eight years old: Boo Boo Kitty, Miss Toby, Eeyore, Oedipuss, Mr. Cuddles, and Scarlett O’Hairy. These days, I share my house with Ivy and Smudge (five-year-old cowcats), and Rory, a very lively five-month-old black kitten. I also have a dog, Pippa (who thinks she’s a cat, because she’s around them all the time) who is sweet and gentle and will be trained to become a therapy dog. Pippa does wonders for my son’s anxiety. When he’s feeling especially low, she’ll cuddle next to him instinctively. When he’s sad, he says hugging her makes him feel better. When he’s lonely, he tells her she’s his best friend. I know she’ll make an amazing therapy dog.

Cats are underrated as therapy animals, though. This is too bad; they’ve been a critical part of my own mental health team (sorry/not sorry to all of my therapists and health professionals who might frown on being lumped in with felines). As I’ve gone through challenges, grown, recovered and had my own career in mental health, I’ve learned these ten key mental health lessons from my cats:

  1.  Nap

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Scarlett O’Hairy sharing her mad napping skills with the next generation.

For much of my life, napping felt like a waste of time. Even when mental distress led to chronic insomnia, I couldn’t nap. It felt like slacking off. So I would just push through, even though I was too exhausted to be productive or enjoy life. It usually made my physical and mental health even worse.

You’ll never see a cat too exhausted to enjoy being a cat. They know how to slow down and listen to their body’s cues. They feel no stigma about napping — it’s a critical part of their lives.  They aren’t missing out. They are recharging, in energy-saving mode, getting ready to play and do their cat stuff and live their best cat lives.

If you are too tired to enjoy being a human, have a nap. Recharge. You need energy to live your best life.

2.  Play exuberantly.

When my cats do wake up, they are a bit bananas. They run as if they’re being chased by demons. They pounce on things only they can see. They spin in circles chasing their own tails. They don’t care at all that I’m sitting and laughing at them. They don’t care if they look foolish, or if what they’re doing makes no sense to anyone else.

Watching my cats chase their tails reminds me of taking an adult ballet class: I stumbled. I wasn’t coordinated. I probably looked foolish to people who might know better. But I kept going, because I liked it.

Cats don’t worry about whether they look silly. You shouldn’t either.

Don’t worry that the things you love aren’t ‘cool’ enough or feel badly because other people look down on your passions. Don’t worry about looking clumsy or falling over now and then. Play is important. Finding things you love to do is a critical part of staying mentally healthy. If it makes you happy, do it, no matter how you look or what others think of the things you like.

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Mr. Cuddles confidently shows off his dance moves.

 

 

3.   There is always time for self-care.

When I became a mother, self-care got pushed way down my to-do list. Waaaay down. I remember once when my kids were toddlers, I cried because I’d been reminding myself to clean my makeup brushes for at least a year. Those makeup brushes mocked me every time I walked into the bathroom; they were a testament to my failure at self-care and a reminder of all the small but important things I used to do for myself but that now, with two small kids, I was sure I had no time to do.

For cats, though, there’s always time for self-care. To a cat, self-care isn’t something extra you add to a to-do list. It IS your to-do list. Watch how much time cats spend grooming. They are either exceeding vain creatures (likely) or just consider taking care of themselves to be their main job. 

Why don’t humans consider taking care of ourselves to be our main job? Why is ‘important’ work something that takes place in an office? Why is it only valuable if we’re paid for it?  We only get one body and one mind. Why don’t we consider caring for them to be the most important thing we can do?

You don’t need to spend as much time grooming as a cat does (unless you’re a Kardashian), but imagine how great you could feel if you made yourself (and the things that make you feel good) a priority.  Taking care of yourself isn’t merely an add-on or something to get to if you have extra time. It’s your most important job.

 

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Even when on duty as office cat, Smudge makes time for self-care.

4.  Claim your space.

Cats aren’t shy about taking what they want. They aren’t shy about letting you know they are there and want attention. Sure, this makes them jerks sometimes. If they want your attention, they’ll sit on your damn laptop, thank you very much. I’ve learned to back up my writing constantly to avoid the dreaded butt-delete.

As a small-sized, introverted woman in a mansplaining and manspreading world, it’s often hard for me to claim my space. I can’t just sit on a laptop to get someone’s attention. But I can be fearless about making my presence felt. I can practice letting people know I’m there, and making sure I’m noticed even when someone is trying to ignore me.

Cats are persistent. They will raise their voices and howl. Women can, too. Persist. Let your needs and your presence be known.

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The bag was impenetrable. Nevertheless, Oedipuss persisted.

 

 

5.  Show affection on your own terms.

Cats are models of consent. Most of us who’ve been scratched know better than to attempt to give a cat a belly rub without permission. The cat will let you know when it’s okay to do that. And when you are permitted a cuddle, you feel honoured. 

Set your boundaries, and don’t be afraid to enforce them.

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A blurry photo of the first time we met Smudge, in 2013…still the only time he’s let us hold him. We respect his boundaries.

6.   Daydream.

Our society values productivity. Busy is the holy grail. But cats know better. Ivy likes to spend long periods of time staring at nothing at all. Frankly, this freaks me out. But she is clearly seeing things that I can’t. Maybe she’s daydreaming. Maybe she’s communicating with the mothership. 

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Ivy did not drink this wine. She likes to have a clear head for her mindfulness practice.

I am a daydreamer by nature, too. I don’t stare at the wall like Ivy, but I’ve learned the value of just sitting with my thoughts. Daydreaming and napping have proven to be a powerful combination for my creativity. The best ideas come to me when I practice mindfulness, or just allow myself to sit quietly and just be. Ideas for writing appear in my head like gifts. Answers to wicked problems become clear.

There is value in doing nothing. From our dreams come our best realities.

7.   Know the healing power of just being present for someone.

I’ve spent a lot of money on therapy over the years. And as a mental health professional myself, I am the first to say if you need professional support, get it. But as a cat lover, I can also say that at some of the lowest moments of my life, it wasn’t talking to another human being that brought me back from the dark. It was a cuddle, a purr,  a lick on the back of the hand. Cats know when you need them. They’ll find you. And because they’re so often guarded with their affection, having a little fur ball curl up next to you when you feel despair is profound. You know they wouldn’t do that unless you were very, very important to them.

They can’t talk, they can’t judge. They won’t mansplain or try to fix things. They’ll simply be with you in your struggle until you’re yourself again. They’ll like you at your lowest, and they’ll like you just the same when you’re at your best. 

They’ll like you even better when you feed them.

 

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When I spent over a week in bed with a bowel obstruction, these guys only left me a few times a day. Best nursing care I had.

8.   Embrace your body, whatever form it takes.

I have struggled with body image throughout my life. I’ve helped others work through their own struggles. At the same time, I’ve had cats of every size and shape, every colour and fur texture. They don’t care how big or small they are. They know they are beautiful.

Cats love their bodies, whether they’re slinky or voluptuous. There is no wrong shape for being a cat.

Why do we think there is a right or wrong shape for being a human?

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Gotten to big to fit into your box? Helpful hint from Scarlett O’Hairy: get a bigger box.

9.   Learn to disconnect.

Working from home as a writer, it’s easy for me to sit for long hours in front of the computer. That’s not very good for my physical or mental health, though. Depending on my frame of mind, spending time on social media might make me feel really bad about myself. Fortunately, my cats let me know when I’ve had enough. Often, they’ll shut down my computer for me. Thanks, cats.

But I take their point. When a cat sits on my laptop, I take it as sign I need to get up and move around and take a break. Somedays, I take an awful lot of breaks.

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Rory’s novel is better than my novel.

10.   Give zero fucks about what others think.

Cats really don’t. That’s why some people don’t like them: unlike dogs, who crave human approval, cats do not care what you think. They will be their exasperating and lovable cat selves, no matter what you think about it. They are authentic.

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Do they look like they care what you think? No, human, they do not.

Now, sometimes, humans do need to care what others think. Being as insouciant as a cat is probably poor advice for getting ahead in life or living in society. But maybe if we cared a bit less about what people think of our choices, and cared a bit more about living a life that feels true to our values and spirit, we’d be happier.

 

Cats know there is no stigma in being a cat. If they felt stigma, they wouldn’t wash their butts in front of important company, or shamelessly get high on catnip and destroy stuff. They wouldn’t fall into the bathtub, struggle out, and indignantly wash their wet fur while you laugh hysterically at them.

Be you. Strive to live as authentically as a cat.

 

Breaking Up

It’s never fun, as a parent, to see your kids bullied by mean girls, or left out of social groups, or losing a friend. It’s a rotten part of parenting, but we can hope our kids have  the resilience to manage these social interactions (with our support) — to learn from them, move on, and find new places where they can belong and thrive.

That becomes a little harder when your child is dealing with mental health and neurological issues.

Puck recently spent a day with his long-time best friend — a boy he’s known since Primary, at his old school. I knew something was wrong when Puck texted me to pick him up early from the friend’s house (he’s usually begging to stay longer). He went straight to his room and shut the door.

It took him a few hours to tell me what had happened: his friend had told him he has a new best friend now.

Puck cried when he told me, and kept crying for a day. He’s still heartbroken. He has other friends, but this was his best friend, and was one of the few positive links he had to his old school. 

At times like this, I don’t know the words to make it better. I can’t kiss it and make it stop hurting. I am simply a sponge: I sit with him and absorb the tears, the emotions that are still too big for him. I add them to my own big fears and upsets, and squeeze it all out when I’m alone so that the sponge is ready again when he needs it. And he needs it, often.

Rejection is such a theme for us, lately. I keep trying to help Puck find the places where he’ll belong and thrive: friends, school, activities, the mental health system. We find rejection at every corner.

The same week his best friend “broke up” with him, he got dumped by his psychologist. This was the third psychologist in the past six years to suggest it just isn’t working out. Once, it was blamed (rightly) on Puck (he was uncommunicative and resistant to therapy). The second therapist, who Puck had actually warmed to, left the city. This time, the therapist graciously bowed out after eight months,  saying some version of “It’s not you, it’s me” (except, it was clear she really felt it was about Puck, not her). We were sent on our way, with a ‘good luck’ and not much else.

Therapy, like friendship, is an intimate relationship — especially for a child like Puck, who fears opening up about his feelings after years of feeling judged and rejected. We can’t expect friends to always be there for us, perhaps. But shouldn’t we be able to expect that mental health professionals will try their hardest not to underline the feelings of rejection and inadequacy that are already in play? It’s good to admit that you aren’t the right one to help, or that you’ve taken it as far as your skills allow. But if you aren’t the right one to help…who is? Where do we go from here? How do we find what we need?

We are back at the start, with no mental health support. Alone.

Puck is not unaware that he’s been rejected, again. He’s old enough to understand what’s happened; he understands his role in it. He also understands that he needs some support in working through his emotions and developing coping strategies. He knows he’ll need to find that somewhere, and that the whole process will begin from step one. That’s an exhausting prospect for him.

Where does this leave us? Well, I can go through the listings or get recommendations from friends or professionals I know, and try to figure out who might be a good fit. Then, we’d go through the screening process again, maybe even costly psychological testing again (out of pocket, because we’ve long ago maxed out our insurance for the year). And then, we’d once again spend months in the ‘getting to know you’ phase, watching Puck bristle at having to explain to adults, once more, what he struggles to understand himself.  We would be months away from any actual constructive therapy.

The other route available to us is to call the children’s hospital and go through their mental health referral process. We’ve tried this before, and I have friends who’ve recently done it, too. 

It did not go well.

It begins with a phone screening, during which the person reading from the script refers to you consistently as (you guessed it) “Mom”,  because you are obviously just a generic sketch of a parental-type person as opposed to an adult trying to hold together a family in crisis. After you have broken down in tears from frustration and their lack of empathy, you will be given an appointment with a mental health professional, anywhere from two to six months away. You’ll later receive a letter stating the time and date of the appointment. These appointments are in the middle of the work/school day, making it difficult (if not impossible) for many parents to accept them without losing work and pay. If you miss that appointment, your file is closed. If you request a change in date/time, you might be waiting another couple of months.

It’s not a system that’s friendly to financially marginalized families, or any family that doesn’t have the flexibility to get to an appointment in downtown Halifax in the middle of the day.

When months have passed and the appointment finally comes, you get asked all the same questions you’ve answered before. As a parent, you’ll be asked to fill in more questionnaires about your child’s behaviours and symptoms, and how it is affecting them and your family. A friend of mine had the awful experience of having the answers she’d written about her child (which she thought were confidential) read back, word-for-word, to the child. Not great for building trust at a time when emotions are already fraught.

At the end of the appointment, you’ll get handed some brochures and helpful websites to visit or books to read (at this point, I seriously think I’ve read every book and could redesign every website, especially since that’s the only help I can access in the months between mental health appointments). 

And then comes the moment of truth: what will they do with you? 

There might be some community-based resources they could refer you to — but too often, when this is requested, the professional isn’t familiar with the community resources available.

You could get sent to a psychiatrist or psychologist in the hospital’s clinic (I’ve never actually met anyone who was offered this option).

You can be referred to a phone-based family coaching program. This program is award-winning, and I personally have not taken it, so perhaps I shouldn’t comment. But I do know people who have taken it. Again, the times for the phone check-ins are not always flexible, so not helpful for shift-workers or for people with family commitments beyond this one child in crisis. Building skills and family resilience are absolutely important, but many I know who’ve taken this program came away feeling blamed; they left feeling it was their inadequate parenting skills that got them in this mess. If they just knew the right things to say, if only they behaved better, little Johnny wouldn’t have a mental illness.

(I bet they’re also referred to as “Mom” on those phone check-ins.)

You can be put on a waitlist for group support. For Puck, this would be a support group for kids with anxiety disorders (which is only about 30% of what’s actually going on with him). The group only happens a few times a year, and there is always a wait list for registration. So you’re looking at other six-12 months for that option. If Puck was offered this, by the time his place on the waitlist came up, he’d likely be placed in the group for 13+. However, he is immature for his age. He’d be better served in a group with younger kids, not teenagers. But that wouldn’t be an option. I know him — he would be intimidated by those bigger kids, and wouldn’t go. Another six-12 month of waiting, wasted.

Puck will start school in September, and his teachers will have the expectation that we’ll have conferences with his support team…which is now non-existent. I am, once again, his support team. It falls on me to be the expert in things I’ve never been an expert in. I will be the one to research possible interventions, to figure out why he is reacting a certain way, to try to find a path forward (at least I’m putting my social work degrees to good use, I suppose). We are fortunate to have a fabulous family doctor with a background and interest in mental health, so at least we aren’t entirely on our own. But realistically, we’re a good eight to 10 months away from any meaningful mental health support. 

Add to that the fact that even if we managed to get psychological help, there is no holistic approach. I certainly don’t expect someone to have expertise in all the issues Puck has going on: Tourette, learning disabilities, anxiety, depression. But there should be help for parents like me to put all those puzzle pieces together and find the experts who can help, who will talk to one another, who will see kids like Puck not as one issue to be treated, but as complex individuals with lots of things going on. I am SO tired of explaining, “This is probably not the anxiety, it’s likely Tourette…”. Someone else needs to help connect these dots.

We need a Tinder for mental health professionals… swipe right for ones that work with your specific issues, have actual availability, and won’t call you Mom.

It would be nice, too, if at least one of them asked how I, as the parent who lives with these issues 24/7, is doing with all of this. (Not. One. Ever. Has.) The generic “Mom” is supposed to be some kind of super-robot, I guess, who is capable of handling all the emotion, confusion and screwed up family dynamics, while managing to work outside the home, and function as an enlightened liaison between home, professionals, and school. 

Our mental health system claims to use an ecological/systems approach that considers the complex interplay between the client and their environment. I see little evidence of that. The effort to get kids through the system quickly and reduce numbers on wait lists means that kids are reduced to a single issue to be treated, not a complex mix of strengths and challenges. They are boxes to be ticked off; files to be dealt with and closed. They are widgets to be pushed through an increasingly dehumanized system, rejected out the other end, and sent back to Mom to deal with.

And ‘Mom’ has to be that super-robot, capable of providing support without any impact to her own emotions, because, too often, we’re the only mental health resource our kids have. 

Beneath the surface

A typical conversation with anyone, these days:

Them: How is Puck? He seems fine?

Me: Everything is fine.

(Everything is not fine).

Them: How are you doing? You’re doing such great work! Things seem to be going really well!

Me: Everything is fine.

(Everything is not fine).

Things look so great on the surface, don’t they? It’s summer, and everyone is posting their fabulous vacation photos. Bikini photos. Summer party photos.

That’s just the surface, though. Those are the images, the narrative, we can control. You never really know what’s going on. Below the surface, things get murky.

We have a family cottage on a lake. It’s idyllic. I like to sit on the dock and dip my feet in the water, watching the kids and the dog spend the whole day swimming and playing. It’s been so hot lately, and the water is so refreshing…but I don’t go in. There is a part of my imagination that is still six years-old and imagines there are monsters below the surface. I hear the Police song Synchronicity II in my head as I draw my fingers across the dark water. I am NOT going in there. 

It looks beautiful; it feels tempting. But I am scared. I don’t know what I might be jumping into. And I am so tired, I might sink like a stone.

I’ve been waking up tired for months, despite sleeping well. It’s a different kind of tired; a tired that parents of kids with special needs know well — a kind of psychic tired. The tired you get when you are always walking on eggshells, waiting for the next crisis (because, of course, things are never as calm as they appear on the surface). The kind of tired you get when your own needs are shoved back and ignored for years, just so you can all keep everything and everyone going.  The kind of tired you get when you’re expected to be an expert in something you were never trained to be an expert in. The kind of tired you get when you’re too often reduced to ‘mom’ and forget who else you meant to be. The kind of tired that far too many women, frankly, consider normal, because if we don’t do this emotional labour, who will?

It’s the kind of tired you get when you’ve been fighting against accepting what life has dealt you.

Everything has been in limbo for so many years now, as we’ve waited for things to get better with Puck…to get back to ‘normal’. I’ve had to jettison anything that weighed me down so that I could just keep treading water. Friendships. My career. Self-care. Reading a book that isn’t about a particular neurological disorder. Writing my own book. I jettisoned so much, in fact, that as I sat on the dock by the lake this summer, I realized how little of me was left. I felt as translucent as the little dragonflies that skimmed across the lake’s surface. 

Who am I, anymore? Where are all the parts of me that once defined me?

I found myself sitting on the shore of a lake and asking myself, like in the Talking Heads song, “Well, how did I get here?”

Where is my beautiful job?

Where is my fabulous life?

I sloughed them off, long ago. I am left with this translucency. When the little dragonflies skim the surface of the lake, water droplets create rainbows on their tiny translucent wings. I’m jealous of them. I want their colours.

My summer’s work seems to be to come to terms with our ‘normal’: this is it. There will be no return to some nostalgic family life that I’m not sure even existed for us before Puck’s troubles began. Puck’s needs and our constraints are real and they are permanent, and I have to work with that.  I’ve been mourning the things I jettisoned as the things that defined me: the 9-5 office job and the financial security it represented, the career ladder. The wardrobe that consisted of more than pyjama pants and jeans. But that’s who I used to be.

And if I’m honest, a lot of the things I’ve jettisoned weren’t such a loss. My new, self-employed way of working may not be financially stable (yet), but it gives me freedom and flexibility. I’ve lost touch with a few friends, maybe, but the true ones are still around, and I’ve managed to find a tribe of creative, supportive women who understand my choices, because they’ve made tough ones of their own. There are a lot of dragonflies out there.

And then, sitting on that dock, an idea: Who’s to say what lurks below the surface of the lake is bad? What if, instead of finding monsters, I found something wonderful? What would happen if I actually dove in?

I recently made the decision to end a work contract I’ve had for a couple of years. I know it’s the right, healthy decision for me, but it’s scary: there’s nothing to fill that financial void. I have to trust that it will come. I have to take a leap, and learn to swim once I’m in the water.

Others have told me I have so much to offer, so much experience, so much skill — things will happen, they assure me. But we all know that sometimes, it doesn’t work like that. Experience and skill sometimes aren’t enough. Look, I’m middle-aged (there, I’ve said it.) This is not a time for reinvention or to figure out what you want to be when you grow up. But there you are. That’s what I’m doing.  (And you may ask yourself, how do I work this?)

I am a translucent dragonfly, but I’m finding my colours. I’ve started working on my novel again – an act that feels reckless and brave and true. I’m revisiting things I used to do and love long ago, and listening to myself more. I’ve talked to so many women in the past few weeks who have encouraged me to think outside of the box and use my talents to make change in the world…I’m just not sure how, exactly, but I’m working on it.

The person I am becoming is not who I was or who I thought I should be. But it will be who I need to be — for me, and for Puck. That’s a gift he’s given me.

What lies below might be good. I need to dive in.

Sent home from school: Who is it helping?

Every time I read an article like this, I again thank my lucky stars that we’ve found an excellent school for Puck – one that understands learning differences, works with the child on social skills and self-advocacy, and supports its teachers to get the training and tools they need to make it an environment where students can do their best. I can’t emphasize enough the difference supported teachers and the right approach can make. It’s been a life-changer for Puck. A life-saver, I think.

According to the above article (which I found via Dr. Brian Goldman on Twitter), Ontario students with special needs are increasingly being asked to stay home. I know from our own experience, and those of friends, that the same is very true here in Nova Scotia.

The article, which cites a study from a special education advocacy group, also notes:

  • 58% of elementary school heads and 48% of high school principals requested a student stay home for at least part of a day;
  • Most principals said they made the request due to safety concerns (does not specify whether they are concerned over safety of students or teacher), although many also said they just don’t have the resources to address students’ needs;
  • Poor attitudes toward students with special needs may also be at play;
  • Ontario has received a $1 billion increase in funding for special education initiatives over the past 10 years. And yet, we’re still hearing stories of kids being excluded, sent home, or treated as a behavioural problem instead of a learning challenge (very often the two go hand in hand).

Safety…and/or Support

The National Post article cites one elementary school principal as saying, “If I have asked a parent to keep a student home it is almost always related to safety (the student runs, hits self/peers/ adults, or vandalizes the space he/she is in).”

Puck’s distress was always focussed inward: he would hit himself when his frustration and anxiety peaked, when learning accommodations that had been agreed to were ignored, or there were changes to his daily routine that he wasn’t prepared for. The school’s policy was to immediately phone me and send Puck home for the day. This was the only response. There was no examination of what happened in the class environment to make his frustration rise; no questioning of how to put accommodations in place to mitigate the chance of it happening again. The focus was really on what the school needed, not what the individual student needed to succeed. That’s not inclusive, at all.

(I do understand that teachers are dealing with so much – big classes, lots of students with challenging needs, students with undiagnosed needs, social issues, underfunding, etc. NONE of this makes a situation that contributes to successful inclusion. I can see how sending a child home might seem like the best option in those circumstances).

Contrast this with his current school, with its focus on kids with learning challenges: when Puck hits himself or his anxiety causes him to shut down, he isn’t immediately sent home. He is given the space to calm down and has the option of going to a ‘Chill Out Room’ where he can calm down, work through his emotions, do other quiet activities, and be supervised by a support teacher. When he is ready, he can return to the classroom. He also has an entire class devoted to learning social skills. managing emotions, and asking for what he needs. Honestly, it’s a miracle of a class, and I wish it was required in every elementary school in the province. (I know a lot of adults who could benefit from it, to be honest.)

Nova Scotia’s Situation

The issues described in the National Post article aren’t unique to Ontario. Nova Scotia’s Commission on Inclusive Education estimated that about a third of the province’s 118,000 public school students need some form of support. There are currently about 27,000 students in Nova Scotia with some kind of adaptation, and about 6,000 on independent programs.

Nova Scotia is in the throes of a major overhaul of its public education system. School boards have been abolished, and a new Education Act was introduced this spring. A report on inclusive education that also came out this spring calls for $70 million to $80 million in new funding over five years to support the changes it recommends, and an increase of 600-700 more staff positions in the education system to ensure students and teachers have the support they need in classrooms.

The National Post article notes that Jacqueline Specht, Director of the Canadian Research Centre on Inclusive Education at Western University, says that simply increasing special education funding or hiring more staff won’t fix the problems. The bulk of resources need to be directed toward supporting classroom teachers and giving them training and tools to help keep students with learning challenges in class.

Funding a system that has, for decades, inherently treated kids with learning challenges as problems to be fixed (or sent home) will not magically create inclusive education. More funding does not automatically equal better learning or social outcomes for students with special needs.

Is Sending Kids Home Really the Best We Can Do?

So what do we need? I don’t pretend to be an expert. I’m a social worker and journalist by training, not an educator. My expertise comes from lived experience and knowing the devastating impact mental illness and learning challenges can have on the entire family, both at home and at school. But I do know that when things go better at home, they go better at school…and vice versa.

My opinion: in addition to the changes proposed by the Commission, we need a holistic approach to inclusive education.

  • We need an approach that takes into account the determinants of health and their complex interplay that makes each student’s situation unique.

My child is a fairly privileged white, middle-class male in the province’s biggest city, and we have the means and the advocacy skills to get him the help he needs. This is not true for hundreds of other families in this province, no matter what the Education Act says;

  • We need an approach that understands successful inclusive education isn’t just how a child feels in the classroom; it’s about how the family feels supported to continue on this exhausting journey.

One aspect that is so often ignored in this discussion of inclusion is the emotional, financial and professional toll having a child with special needs takes on the family. And let’s be honest: that burden falls most heavily on women. This is a feminist issue.

When Puck started school, I was employed as the Senior Policy Advisor to Nova Scotia’s Minister of Health. I had a Master’s level education, a varied work history, and was a published author. The future’s so bright, I’ve gotta wear shades.

Flash forward to now: I’ve only been able to work part-time over the past couple of years, and that work has been through self-employment, because Puck’s needs are too great. When a school is phoning you every day to take a child home because he is unmanageable or unteachable, you are not going to be able to sustain an executive-level office-based job for very long. Self-employment gave me the flexibility I needed to be there for him, to take him to appointments, to take him to the ER when he was in crisis. But the toll this takes cannot be ignored: my career has suffered, and to be quite honest, I’m not sure where my “career”, as such, actually is now. I lay awake at night worrying about it, because in my late 40s, how do I start over? Our finances have been cut almost in half (and again, I realize we are very fortunate to even have a two-income household).

There is seldom acknowledgment that sending a child home from school repeatedly places a large economic burden on the family…on the mother, usually. In his last year at that school, Puck was only in school 20 days between January and June. He was sent home repeatedly when his anxiety was high and he was ‘unteachable’. Missing so much time meant, of course, that he fell behind and his anxiety became even worse. Eventually, it just didn’t even seem to make sense to send him. By April, he was pretty much home with me full-time.

Contrast that with this year, when he was seldom sent home and his emotional issues were dealt with on-site: his academic progress has been astounding, and he’s now performing above grade level in some subjects. When the emotional health is supported, children thrive.

If only we did the same for all kids. And their parents.

  • We need an approach that addresses stigma.

In his old school, so much of Puck’s interactions with his teachers were based on fear. The teachers didn’t have the tools or training they needed to understand how to help Puck. They didn’t have support. As a result, they treated Puck as a problem. Other students saw this, and also treated him as an outcast. Puck, of course, also picked up on the stigma, and internalized it. It was common for him to say that he was stupid, or bad, or would never be good at school. He might not have heard those words from his teachers, but he felt them in his heart.

(Now, by the way, he tells me he’s good at math, likes art, and is an excellent writer. Stigma-free teaching for the win!)

I’m hopeful that the new Education Act will give teachers more support to help kids with special needs and learning challenges…to actually keep them in school, and not to send them home as a default.

Parents and teachers need support in order to help our kids thrive. Sending them home does no favours to anyone. It may remove an immediate stressor, but it doesn’t improve outcomes. And it certainly doesn’t create inclusion.