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. 

Advertisements

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.