Christmas 2018: A Weary World Rejoices

Last week, a woman threw her coffee at me. This kind of sums up my 2018, really.

I had parked my car along a curb to pick someone up from an apartment building. Another car pulled alongside mine, blocking me in. I waited a moment for them to move forward. They didn’t. I waited another minute or two, started my car, and gave a gentle honk of the horn to let them know I was there. 

After a moment, a woman got out of the passenger side. I gave her a friendly wave. She slammed her door and yelled obscenities at me. Then she threw her cup of Tim’s coffee at my windshield and stormed into the apartment building. 

I was shattered for the rest of the day. I asked myself, over and over, what I’d done to provoke it. I hadn’t been hostile. Why had she? I kept seeing the coffee splattering across my windshield, the mess obscuring my vision.

And that, for me, was 2018: I pinballed through the year thinking I was doing okay only to meet with the worst, until I could see only the mess.

I know I’m not alone in feeling like 2018 has dragged on for much longer than its allotted 12 months. This year has been a long slog through a dank pit of ugly. For me, I’ve been trying to emerge from a cocoon, but I am far from a beautiful butterfly (at best, I am a stubby moth). It’s been a year when I felt like the universe was shouting “NO” each time I tried to move forward — almost as if a physical roadblock was placed in front of me, forcing me to stop, check my map, and recalibrate. I’ve learned not to take stability of any kind for granted.

I shed a work situation that was financially ruinous for me; on the upside, it forced me to be intentional and creative about the path I want to take going forward.  Puck emerged from the worst (knock wood) of his challenges; his confidence and peace are a wonderful mystery to me, but I’m always on alert for things to change. Daisy, on the other hand, has struggled mightily this year against her own demons. My heart aches for her, and I worry about the road ahead. But my concern is tempered by the fact that my sweet girl shares her feelings and fears with me. We will find the strength to get through these things, together. 

2018 was the year I confronted the demon that’s been riding on my back for almost 30 years: I was diagnosed with PTSD as a result of the sexual assault I experienced at age 20. I’ve long suspected the diagnosis, but as so many of us do, I saw the problems I’ve experienced more as character flaws and personal failures. I saw the symptoms individually rather as connected parts of a constellation. The hyper-vigilance and startle reflex. The nightmares. The flashbacks and invasive thoughts. The fear of groups of people. The fear of people who are drinking. The inability to trust people or open up to them. The constant, punishing self-hatred and self-sabotage. It was only when someone helped me to see these things together that I understood this wasn’t just something I could just shake off.  Parts of me are still stuck in that August afternoon in 1989, and I’ve started the hard work of facing them. World events have certainly forced my hand in this. It’s hard to deny your own experiences when watching Christine Blasey Ford give her brave testimony, or when listening to so many #metoo stories. The more women come forward, the more others make sense of what has happened to them.

There is relief in knowing that I can, finally, work through this, and that the world is in a more supportive place for it to happen. There is exhaustion and dismay at doing it at the same time my children need my full attention. And there is so much emotion. I am raw, and vulnerable, and I cry a hell of a lot. I am so angry, and so sad, but I have also found my voice and a new energy. I feel like kicking things. I want to kick at my memories, and at insensitive people. Inadequate systems. The patriarchy. 

It’s tempting, after such a year as this, to turn one’s back on the holiday season. It may seem needlessly exhausting, frustrating, and even pointless to turn on the Christmas tunes and put on a merriment we don’t necessarily feel. There are oh, so many moments when I want to just pull a blanket over my head and hide until January 2nd. Many of us feel shame about our lack of Christmas spirit. But there should be no shame is noting what’s lacking in our hearts. Focussing solely on the happiness of the season ignores the polarity that’s inherent in Winter Solstice. This time of year and its celebrations are traditionally as much about the darkness as the light. Death and rebirth. Ends and beginnings. I feel that more than ever, this year. So despite the emotional exhaustion and confusion that’s been my 2018, I can embrace that polarity and drag myself across the year’s finish line. We’ve made it. It’s almost done. I might not be able to clearly see the light yet, but I can celebrating the fading of the dark.

This year, I find myself clinging to traditions. I’m not doing it out of a fear that it MUST be done or Christmas will be a failure (which is how I’ve felt in the past). This year, revisiting traditions and holiday memories feels healing and therapeutic. We dig our traditions out of boxes and recipe books each year not just to make things look good for those around us, but to connect with what’s missing. I do them because they bring me closer to the women who have gone before, who have struggled hard to make a magical holiday out of very little in times or war, unemployment and illness. I look at their cookie recipes, written in fine cursive on the back of a receipt in the 1940s, and I know I am another chapter in our family story. I feel less alone. There is continuity and renewal.

This year, Daisy and Puck are both teenagers. I’m less concerned with the external trappings of Christmas, and much more focused on how things feel. My rituals exist not just to give them magic and memories, but to give them tools for the future, for times when the pressure to have a holly jolly Christmas exceeds the happiness they feel. The tools aren’t fancy, and they aren’t necessarily ones I learned in social work school. But they can, I hope, help them fill their cups at times when they’re running dangerously low on magic and faith. This year, I’m teaching them to make the Acadian meat pie generations of my family has eaten on Christmas Eve, so that they can feel more connected to who they are and where they come from. We’re talking through memories as we choose which decorations to put out. Christmas 2018 is about careful, quiet activities that bring us peace, and that we choose for ourselves. If we don’t want to do it, we’re saying no. The three of us have come to realize, this year, that living up to others’ expectations — and sometimes, our own expectations — can be where trouble begins. Defining happiness for ourselves (and defining what Christmas will look like), can be where peace starts.

Traditions ground us, providing a reminder that no matter how unrecognizable life becomes, there are still elements of comfort and joy and familiarity — things that can take us back to what feels like a simpler time. They don’t have to be done to Martha Stewart standards. Half-assed will do very nicely, sometimes. Having the right decorations and an Instagrammable meal doesn’t guarantee holiday happiness. To be honest, some of the years when I had the most picture-perfect holidays was when I was feeling my absolute lowest. 

There was a Christmas when Puck and Daisy were still babies, when everything looked perfect. The house was perfectly decorated. The gifts were just right. My freezer was stuffed with cookies. But my world smelled of gingerbread and despair. I woke in the wee hours the day before Christmas and thought, for an instant, that the best gift I could give everyone was to no longer be here. The thought was fleeting, but it was terrifying. Despite the brightly coloured lights around me, I could see only blackness. Later that day I went into my office, closed the door, and called a crisis line. A photo from a Christmas party I attended that evening shows me cuddling a young Puck in my arms, smiling and laughing. You’d never have known. 

You never do know. 

That’s why kindness — to ourselves, and to others — is so important. Everything is fleeting. Happiness. Life. The holiday season. Troubles.

The solstice approaches. The darkness has drawn out, but the light will return. 

And to the woman who threw the coffee at my car — I get it. I do. A cup of kindness can be hard to find, sometimes, and the smallest thing can become too much. I hope your cup and your spirit are well replenished. 

 

*NOTE: if you need help over the holidays, do reach out. There is hope beyond the dark.

https://www.crisistextline.ca

Kids Help Phone: 1-800-668-6868

Crisis Services Canada: 1-833-456-4566, or text 45645

Native Youth Crisis Hotline: 1-877-209-1266

or DIAL 911, or visit your local emergency department.

Advertisements

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.

The Leap

Sometimes the universe gives us a nudge. This summer, it’s been hurrying me along with a finger in the back, steering me in a certain direction. 

These summer days have been long, heavy, and wickedly humid. The sun is too hot outside; indoors, I move about in a perpetual twilight, with the shades drawn to keep out the heat. The weather isn’t the only thing that’s intense. There is an electricity in the air that transcends summer thunderstorms. It’s so much lighter and livelier than the oppressive heat. Have you felt it? It’s an energy. It’s like magic.

Something magical has happened to me this summer. I’ve revisited old ways of exploring my intuition and connection to the world.  I’ve tapped into a well of creativity I didn’t know was still there. I’ve surrounded myself with like-minded creative people who see there are different ways of doing things and different definitions of success. There are signs and serendipity everywhere — in forgotten songs I randomly hear; old friends who once again drift into my sphere; shooting stars; the peace I feel while writing. 

A few weeks ago, I wrote here about my need to take a deep dive into life — to leave safety and complacency on the dock, and jump in and see what the water holds for me.

I have taken the leap.

I am going to make my living by writing, as I’ve wanted to do since I was a child.

I feel naive and even a bit silly writing this. Who am I to think I can succeed at anything on my own, let alone this sort of endeavour?  

Well…who am I to think I can’t?

I was raised to believe things happen a certain way when it comes to careers and money: you go to school. You do well. And then you get a job…and you STAY at the job, because a job is safety. A job is identity. A job is status, and your future.

I started down that road. There were many wonderful opportunities, and I was ‘successful’. But somewhere along the road, a nagging little doubt crept into my thoughts: “Is this really what I’m supposed to be doing? Is this it? Is this who I am? Still, I stayed. That’s what we do, isn’t it? It felt too late to change paths. It would be too risky. I had a pension, security. I had responsibilities. I was climbing the ladder. A person can’t just jump off and start again. 

Then, I was pushed off the ladder. It felt like the end of the world, but as is so often the case, it was a gift. It’s been three years since my very good job with the government ended abruptly, and I took my first wobbly steps as a consultant. First, I worked under the umbrella of a wise and established mentor. Then, I left to take a contract with a non-profit. 

It was always meant to be something temporary: once Puck’s issues got sorted, I would go back to a straight 9-5 office job. I would figure out what I wanted to be when I grew up, and I would find security. I was looking only at what I’d given up — all those traditional notions about status, bonuses and job titles. 

I realized last year, though, that I couldn’t get back on that ladder. Puck’s issues weren’t going to magically go away. We would always need more flexibility than a traditional office job offers. The magic, such as it is, would have to come from me. I would have to make it for myself.

I spent a while feeling very sorry for myself about this. I compared my path to those of friends’. I looked at social media posts with envy,  comparing my own situation to their seemingly interesting and secure jobs. I saw only what I didn’t have.

This summer, I flipped that thought: I started looking at what I do have. I have freedom, and I have honesty.  The flexibility that is a necessity is also a gift. Through all the struggle we’ve been through, I’ve had to have a hard look at what is important to me, how I define myself, and how I define success. And for me, success means being creative. It means being content. It means telling the stories inside me, and helping others tell theirs. 

I’ve spent the summer revisiting a novel I began many years ago. Rewriting and discussing it with a trusted writing coach has brought me joy I haven’t known in any ‘professional’ work setting. It’s given me the courage to take the leap.

So how am I taking this leap? Well, I’ll be helping people tell their stories. All kinds of stories, in all kinds of contexts. That might include:

  • editing personal or professional writing;fullsizeoutput_289a
  • researching and writing documents;
  • preparing grant proposals;
  • creating content for blog posts or websites;
  • creating newsletters and communications materials;
  • writing articles;
  • writing your cover letter or polishing your CV;
  • presenting to groups small or large about mental health, digital health, and the history of social work in Canada.

Thanks to Danielle Crowell, I have a beautiful website that highlights work I’ve done (https://www.michellehebertboyd.com). Please share it with anyone you think might be interested, and keep me in mind for your writing and editing projects.  I have researched and written documents for government departments and national agencies. I have helped small non-profits create policies and communications materials. I have helped individuals edit work submissions, blog posts, and manuscripts. I can’t wait to see what other stories I can help bring into the world.

I am not brave, by the way. This is as much a leap of necessity and faith as it is an act of courage. I have to trust that the work will come, and have to accept that I may not be as financially secure as I was brought up to believe I must be. Ultimately, though, I have to believe that work isn’t just about making a living and getting to retirement; work is about creating a life.

This seems like a radical idea. I hope you’ll join me in it. Let’s create together. 

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.

 

If you give a Mom a popsicle…

When Daisy was a toddler, we had a fluffy calico cat named Scarlett O’Hairy. Daisy adored her and wanted to be just like her. She’d sleep like a cat, all curled up with Scarlett in a patch of sun on the floor. She tried eating like a cat (but even her love for Scarlett couldn’t convince her to take more than one bite of the foul-smelling food). Once, in the wee hours of the morning, Daisy saw Scarlett jump off my bed and decided to do the same thing. While Scarlett landed gracefully in the laundry basket, Daisy fell into the dresser and split her forehead on a sharp corner. This resulted in a trip to the pediatric emergency room, and four stitches. Another time, Daisy took up Scarlett’s favourite pastime – digging in the houseplants. She ripped leaves off the plants for Scarlett to eat and crammed mouthfuls of potting soil into her own mouth. This resulted in a call to poison control, and a decision that maybe a baby brother or sister would be a safer companion than a cat.

fullsizeoutput_3d3
Scarlett O’Hairy: on Wednesdays she wore pink.

 

We’ve spent a lot of time in the emergency room over the years, for cat-induced and other ailments: ear infections, kidney infections, strep throat, croup, broken bones.  Eventually, toddlers pass out of the Walking Germ Bag phase. Trips to the emergency room become so infrequent that the kids actually look back on them fondly: misty watercolored memories of being safe and warm, wearing brightly coloured johnny-shirts and wrapped in warm flannel blankets, and being treated by kind people who gave them popsicles and stickers and cool-looking bandages. 

My memories of those visits are equally nostalgic. Maybe that sounds strange – I mean, what parent looks fondly back at illnesses and middle-of-the-night trips to the ER? But like my kids, I don’t remember the illnesses much. I’ve thankfully forgotten the vomiting, the search for clean sheets in the middle of the night, trips to the hospital through dark streets with time standing still. What I do remember is how we were all treated. My kids were treated with compassion and kindness. I was also treated so well. Everything was well-explained, follow-up instructions and appointments were clear, and the health professionals seemed as concerned with how I was coping as with how my kids were managing. Once or twice, I even got a popsicle of my own.

I’m nostalgic for that, because these days my visits to the ER are for Puck’s mental health crises — something that can’t be treated with stitches or antibiotics, and is a genuinely terrifying kind of pain. And when we get past this, my experience with the mental health emergency room is not a memory on which I’ll look back fondly.Read More »