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. 

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.

 

Confessions of a Report Card Junkie

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…

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 »

Updating my Privacy Policy

Here is a science lesson: pearls are formed when an irritant invades an oyster. The oyster probably wishes it could just get rid of the irritant and go about its business. But it can’t. It has to live with it. So it hides the irritant. It excretes a fluid to coat it, glossing it over until the sand or parasite at its core is no longer recognizable. It’s become something else. What was painful to the oyster becomes beautiful and desirable to someone else. (Of course, it’s ultimately stolen from the oyster, so all that hard work of coating and hiding was for nothing.)

Our life stories are pearls. They often start from pain, but we learn at an early age that no one wants to see the pain. So we find ways to cover it, to dress it up and make our pain socially acceptable. We drink. We alter our bodies. We use humour. We work too much. We deny ourselves, our feelings. We lie. We fit in.

There are stories you can tell, and stories that you are supposed to lock up inside you. The ones we lock inside us aren’t pearls, though. We still feel the irritant, the pain. We can see what they really are. All else is fairy tales. 

I’ve been quiet here over the past several months. So many times, I’ve sat in front of my laptop and started typing. Each time, I edited. Coated the irritant. Ultimately, I deleted.

After writing about my experience in politics in my #metoo posts back in February, many people reached out to me. Most were supportive. Many wanted to hear more or to share their own stories.

A few others, though, wanted me to just be quiet.

Sometimes, it only takes a few voices of dissent to silence us. Ninety-seven voices can tell us what we’ve said is relevant and important and helpful. Three voices can tell us we’re stupid and misguided and should just keep our stories to ourselves.

Guess which voices echo loudest in our heads?Read More »

Fantasyland

Everything in the room is colourless and plastic. The grey walls haven’t seen paint in years. (Are they actually painted grey? Or has time and neglect turned them this colour — a blend of sorrow and blur?). In the middle of the room are three beige, too-small plastic chairs – the sort parents force their rear-ends into during kindergarten visits. One bigger, mottled faux-leather chair, ripped and spilling orange innards, dominates the space – the only speck of colour in a room devoid of cheer and decoration.

This is where furniture and parents’ hopes come to die.

Just down the hall (around the corner where the other families can’t see us) is the regular children’s emergency department. I’ve been there plenty of times, with both my kids. We’ve gone there for middle-of-the-night ear infections, cuts, broken bones. There are clean cubicles adorned with stickers of cartoon characters. Nurses bring popsicles. They do their best to ensure children are comfortable and not scared.

This time, we’re here for a broken mind, not broken bones. It seems they don’t bring popsicles for that.

It’s two weeks before Christmas. Just a week earlier, we were on a family vacation to the most magical place on earth. Earlier that morning, I’d been on the national morning news, talking about a book I wrote.

Now, we sit in this colourless room, waiting for a member of the mental health emergency team to talk to our 12 year old about why he’s suicidal. And as we sat there, I was getting texts from people to congratulate me on my media appearance, or to comment on my vacation photos.  These two realities don’t align. But which one is real, I wonder? Read More »

The Island of Misfit Parents

School starts in one more sleep. Puck is excited, for the first time ever.

I am apprehensive.

His new school seems to sense the apprehension parents will feel. It offered a ‘Parent Orientation Night’ a week before school starts, to help ease our fears.

Daisy is almost 14, and Puck is 11. I’m a seasoned veteran of Parent Nights.

For the past six years, I’ve attended the Parent Information Night at Daisy and Puck’s liberal arts private school. They’re social events, held in the cafeteria of the newish, bright and cheerful, purpose-built school. Parents are served wine and beer, cheese and snacks. I usually rush to Parent Nights after work, so the wine and cheese does double duty as social anesthesia and my supper. Perfect.

The parents mingle – some, who socialize with each other regularly, mingle readily. Some Socially Awkward Penguins (like me) fiddle with our wine glasses and hope the actual information part of the meeting begins quickly.

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The past couple of years, as Puck’s behaviour deteriorated, have been increasingly awkward. His classmates’ parents give me wan smiles and drift on past. I am marked as That Mother. The one with the ‘Bad Kid’ who always gets sent home from school. The one their own kids tell them about breathlessly across the supper table.

The school Puck will go to this year isn’t bright and new. It’s a repurposed 1960s-era neighbourhood school, patched up and old-school in every sense. Cloakrooms. Blackboards. Dim, long corridors. On Parent Night, parents shuffled quietly into a gym that smelled of decades’ worth of rubber-soled shoes and floor polish. There were no refreshments, no socializing. I found a seat in the middle of the room, and looked at the families around me.

My discomfort was immediate. Some parents had brought a child with them — perhaps unable to get child care, or perhaps hoping to make the child more comfortable in the new school surroundings. These children were not like the children at Puck’s old school. They looked…different. They were 12-year olds who hid their heads in a parent’s shoulder. They were eight-year olds rocking in their chairs. They were high school students, biting their nails and tapping their feet to diffuse anxiety and energy, oblivious to the room around them.

They made me nervous.Read More »