The wolf and the trail of breadcrumbs

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Over the past two years, I’ve shared a story at a few national conferences on digital health and patient engagement. It’s the story of how we first learned that Puck has Tourette Syndrome (TS), and the first time I realized how much energy and know-how it would take to navigate our health care system. It was a disempowering experience, but looking back, it pales in comparison to the messes we’ve encountered in trying to access care in the mental health system.

When Puck was eight, he started having severe headaches. He’d already been diagnosed with severe learning disabilities a year earlier, but he’d never really had any physical health issues. Our family doctor believed his headaches were migraines. She recommended getting some blood tests, and she suggested a CT scan just to rule out anything else.

We got the CT scan within a week. A few days later, on the Thursday afternoon before Easter, my doctor phoned me. (You know that’s never good: it’s usually the office manager or receptionist who phones, not the actual doctor.) She told me that  ‘something suspicious’ had shown up on the scan of Puck’s brain, and that while we shouldn’t assume the worst, we should prepare for it. 

There have been few times in my life when I felt as weak as at that moment.

The doctor said she’d send a requisition for the next available MRI, so that we could get a better idea of what was on Puck’s brain. All we could do was wait.

Weeks went by. Every time Puck got a headache, I imagined a ticking bomb in his head. I waited to hear about our MRI appointment. At work, I phoned my home answering machine every hour, hoping there’d be a message. There was nothing. After almost three weeks, I phoned my doctor’s office. The receptionist put me on hold for a long time, and then came back and said, “Oh sorry – we actually forgot to send that requisition. We’ll do it right now.”

And so, we waited some more. 

At the time this was happening, I’d recently finished working as the senior policy advisor to Nova Scotia’s Minister of Health and Wellness. I knew first-hand about the challenges with the health system. I read the frustrated letters from people who couldn’t access the care they needed in a timely manner. Almost weekly, the Minister and I spoke with people who were upset they couldn’t access specialized treatments or drugs they needed (or believed would help). I had thought that most people’s frustration with our health care system came from needing something extra; something more than our health system could reasonably offer. But now, going through this myself, I knew it was about the whole system: the lack of coordination, the lack of empathy, the lack of timely access to even the most routine care. 

Don’t get me wrong: I am a huge supporter of our Canadian health care system. But I believe many of the problems we face are not a Canada-only problem. So much of people’s frustration with any health system comes from the complete lack of compassion and information – the lack of patient connection to the decisions and communication about our care. Those are problems found in most systems, whether universal or insurance-based. Information IS power. It gives you a sense of control over a very out-of-control situation, and that goes a long way to giving someone peace of mind. Not knowing where we were in the system, or if anyone was even paying attention, was a horrible, powerless feeling that only compounded the powerlessness you feel when dealing with a sick child. 

Around this time, I complained about the whole MRI situation to a physician I knew through my work. She told me she might be able to help. She said her clinic used a personal health record, and that she’d be willing to take Puck on as a patient. I didn’t see how a health record on a computer could possibly help, but I was willing to try anything. So she helped me set up Puck’s record, sent him for loads more blood tests, and sent an MRI requisition to all of Nova Scotia’s then nine health districts to try to get us in faster, somewhere.

Puck had the blood tests the next day. Two days after that, I got a notification on my phone that the test results had arrived. I could go online and see all of them, in detail. I’m not a medical professional, and I can’t interpret medical tests. But each result came with an indication of what was considered a normal range, so I could see where Puck’s results fell. The doctor had also sent a note explaining which test results indicated a need for follow-up. Finally, I had information. It might not be the ‘smoking gun’ that would tell us what was causing Puck’s headaches, but it was, at least, a piece of the puzzle. I could look at those test results, and know what things I could STOP worrying about. For a parent with a vivid imagination and not a lot of information, that was powerful. Being able to access health information online was a huge step in addressing the power imbalance that exists between health professionals and patients.

We managed to get an MRI in another part of the province with a shorter wait. The doctor had also arranged an appointment with a neurologist at the children’s hospital (in a brighter, far more cheery part of the hospital than the mental health ER we later became too acquainted with). The neurologist was a delight. He played soccer with Puck in the hallway, put him at ease, and told us, happily, that the ‘suspicious thing’ on Puck’s brain was nothing to be concerned about – it was just an enlarged space between blood vessels. The headaches were, indeed, migraines. 

However, through all the testing and family history he did, he discovered that Puck has Tourette Syndrome. Incidentally, I was diagnosed with OCD at the same time – the two often go hand-in-hand, and I’d been living with manageable symptoms at the lower end of a spectrum my whole life. (My partner told the neurologist my symptoms made me ‘mildly annoying to live with’. I told him they made me ‘quirky’.)

 As it turns out, these things were all part of a long trail of breadcrumbs that we’re still following for Puck – a trail that now includes learning disabilities and severe mood disorders. I suspect we’ll soon be adding new breadcrumbs to the trail. Every time I think I’ve got the trail figured out, the signposts disappear, or the trail stops altogether – or the Big Bad Wolf, in the guise of the health care system, comes along and gobbles up the trail, leaving us lost and alone.

There is no easy way for parents to navigate complex health systems. Throw in both physical and mental health systems — which, after all, are not integrated and are two completely different experiences — and it’s twice as confusing and time-consuming to navigate. As a parent, you have to know who to talk to, and you need to know how to speak their language. 

I know how lucky I am. I had connections I could call on for help. I knew the language. Most parents don’t have that. I remember sitting and waiting, as Puck was motionless inside the MRI machine. I was so anxious, so terrified of what they might find. Seeing him stuck in there broke my heart, and I had a premonition that it was only the beginning of many such heartbreaks, as our journey through the health system unfolded. I remember, too, thinking of all the parents who couldn’t follow the breadcrumbs. Maybe they didn’t know who to turn to for answers, or they didn’t even think you should question your doctor. My heart broke for those parents…the ones who are still waiting by the phone, waiting for an appointment for a test that might give them answers, even though the requisition was lost weeks ago or sent to the wrong fax number. 

We have a right to expect that our information will be handled in the most efficient and compassionate way possible (are fax machines really that efficient, these days?). Parents with children experiencing a health crisis – whether that’s physical or mental – are in crisis, too. The system shouldn’t add further burden to these families asking them to create their own trails, alone.

We’ll never get back where we were before we started on this journey. And with this huge wolf following behind, eating the breadcrumbs…how will we ever find the trail that takes us where we need to go?

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The Leap

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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

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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

baloneymistress5 Comments

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?

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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.

 

Confessions of a Report Card Junkie

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I’ve never liked New Year’s Eve. It feels fake and forced. For me — a true nerd — beginnings and endings were always defined by the school year. September was for new intentions and possibilities. June was the end of a chapter, a frenzied season of field trips and prom and report cards and ‘grading day’, followed by a drowsy mental hibernation on the beaches of the Northumberland Strait. 

I was a report card junkie. My friends were pretty, or popular, or athletic, or talented. I wasn’t those things. But I was smart, and grades became my validation and my drug. School was what I was good at, and report cards were my proof that I had value in the world. 

Taking pride in your accomplishments is wonderful. But defining yourself through someone else’s evaluation of you, or by the awards you’ve won or any external validation, isn’t really healthy. That sort of praise or feedback can be fleeting. And when it’s gone…who are we? Who are we, if we are not the Brain, or the Athlete, or the Beauty? Who are we without our labels (Did The Breakfast Club teach us nothing?)?Read More »

If you give a Mom a popsicle…

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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.

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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 »