everybody has mental health

mental health

Earlier this week, I attended a session on Optimizing Mental Wellness in People with Down Syndrome at the Down Syndrome Resource Foundation.  The speaker was Susan Fawcett, their Director of Therapy, Behaviour and Family Support.

Susan’s presentation reminded me how my own mental health and my kid’s mental health are all wrapped up together.

It makes me a wee bit nervous to talk about mental health. First there’s the regular ole mental health stigma.  Then there’s the incredible pressure I feel to be the strong mom who advocates for system change all the time.  I even feel pushed into cheerleader mode, aka: Everything’s Fine!  Fine!  Fine!  My kid is the best kid with Down syndrome EVER!  

Of course, that’s all bullshit.

Here I will repeat my mantra:  Being a human being is stressful.  Having children is extra-stressful.  Having a kid with Down syndrome adds yet another layer of stress.  But 95% of my stress comes from systems (health, human services and education sectors) and the hostile, ignorant ableist world.  This is not my son’s fault.  I won’t talk about his mental health here because that’s his business, not mine.  I don’t want to trod on his dignity.  But I can talk about my own struggles.

If we are truthful, we all have mental health stuff, whether we have a disabled kid or not.  It just takes becoming vulnerable for our stuff to be exposed.  I soldiered through the strong mama bear persona for 13 years after my son was born.  It took getting cancer two years ago for my whole house of cards to come tumbling down.

How I wish I had been more preventative about my own mental health.  I should have regularly seen a mental health professional to at least deal with my own childhood stuff. But I didn’t – the crisis of cancer is what introduced me to the therapist’s office.  Now I think and talk about mental health a lot.

Susan’s presentation was timely for me.  She offered helpful strategies for mental wellness, both for our kids and ourselves.  Susan gave me kind permission to share her talk, so I’ve summarized her points. As she told me, she wants to give this mental health piece more airtime.

Mental Wellness Strategies for Children with Down Syndrome – Susan Fawcett

  1. Help your kids engage in activities to experience both pleasure and mastery.  Susan called this behavioural activation.
  2. Make sure your child has a peer group of children of similar intellectual ability, especially starting in late elementary school.
  3. Consider social skill training, like the Zones of Regulation.
  4. Always look for self-esteem boosters for your child, like chances to be more independent + have choice, opportunities to teach others and regularly talk about your child’s strengths and unique talents with them.
  5. Give your children regular praise.  Interesting, Susan has observed us parents don’t offer enough specific, enthusiastic praise to our children. I’ve been guilty of that – falling into ‘corrective’ mode with my own son, which is a way of being that is focused on the negative.  I’ll be more aware of this going forward.
  6. Cognitive behavioural therapy can help all of us – of course including people with intellectual disabilities too!
  7. Talk to your child early and often about having Down syndrome.  (Books like Paint the Octopus Red can help explain genetics and for older kids, shows like Born this Way are awesome for role-modelling and offering a glimpse into the future).

Mental Wellness Strategies for Families – Susan Fawcett

  1. Acknowledge having a child with an intellectual disability is stressful.
  2. Organize date nights with your partner.
  3. Finding a social support network is crucial.
  4. Begin a mindfulness practice to help with stress.
  5. Take advantage of informal or formal respite.

For families, I’ve written about the concept of self-care before.  Self-care is way more than bubble-baths.  Here are my essays:

My small comforts list
Moms and Mental Health
Beyond Bubble Baths
Leaning Out

Dr. Yona Lunsky also wrote a great piece about this topic for families called Save Some Love for Yourself.

As Susan importantly pointed out, kids with Down syndrome have high levels of empathy, meaning they are more in tune with our own moods and stress level.  If we don’t overtly care for our own mental health, it will affect our kids.  This alone is a good reason to at least start talking about mental wellness in safe spaces in our own community.

If you are hesitant to look at your own mental health, at least do it for your children.   After all, your head is screwed onto your body.  We are in such denial about the simple fact that human beings also have rich mental and emotional lives. You do not have to wait until you get cancer like I did to take care of your whole fine self.

humpty dumpty

U2

On the last day of a cancer retreat I was at last spring, the facilitators talked about planning for our re-entry into the real world. It was as if we had been astronauts in outer space, tucked away in a remote lodge in the mountains by Whistler, surrounded only by unconditional love, kind touch and good food. Re-entry meant taking care of ourselves when we returned to the jarring noise of the city and the tyranny of the busy.

I have been lucky to have a gradual re-entry to the paid work force after my cancer treatment and recovery. I dipped my toe in by picking up my partner duties with our communications company and dabbling in editing patient materials and annual reports. This served me well as the rest of my days were filled with long walks, mental health and physiotherapy appointments as I concentrated on picking up the collateral damage caused by cancer. I was, and still am, disoriented from what happened to me.

My ability to have a gradual re-entry is due to my privilege and the fact my husband has a decent contract that supports our little family. Many people I know who have had cancer work right through treatment or are forced back to work immediately because of draconian human resources rules and restrictive disability insurance policies. True, some people have other needs to work too, for the distraction or the social connection. We should allow everybody to do cancer recovery in their own way. But I somehow knew I had to be alone in my own thoughts in order to heal. This was both the most terrifying and the hardest thing I’ve ever done.

The world wants stories that tell the happily ever after, to tie things up like a bow on the present. There is a lot of pressure to forget about cancer, to go back to the way things were before and even worse, to be BETTER THAN EVER! This expectation is exhausting.

I cannot go back to the way things were before because I am no longer the person I was before. Once you’ve broken open, there’s absolutely no way to re-assemble those pieces in the same way. I’m Humpty Dumpty. All the king’s horses and all the king’s men can’t put me back together again.

I think a lot about how to construct a story. I like the tidy endings, the moral of the story, the lessons learned, the take-aways. It pains me as a writer not to have that now. (See how I’m jumping around here with my paragraphs, with no transitions or linked thoughts? If this was a marked essay, I’d get a D-). The messy is messy.

I often listen to podcasts on my long walks. Recently I heard a Good Life Project interview with Casey Gerald. He talked about his (brilliantly-named) book called There Will be No Miracles and said:

           My one nugget is that the world wants to turn you into a nugget.

I stopped in my tracks, rewound the interview and listened to it again.

            My one nugget is that the world wants to turn you into a nugget.

Don’t let them turn you into a nugget.

I do have some unfinished inklings: I’m done being a doormat, so I’ve started severing relationships and commitments that I’ve allowed to become unhealthy. My contributions have value and worth. Integrity – acting how you say you believe – is crucial. Small, individual kindnesses are everything. I must seek joy every day. Holding space for someone is a gift. Less talk, more listening, more action. And something political: the need to be king of the castle is destroying our world.

As much as this hurts me, I’m going to leave this little essay here – gaping and with the bow overtly untied. I’m not Oprah and there’s nothing I know for sure.

I only hold tightly to my broken record statement: we must keep speaking up to share our messy beautiful stories to both heal ourselves and to change the world.  Something I’ve added this year, that I feel very strongly about:  It is our responsibility to make room for other people’s stories too, not just our own.

I resolve only to drag all my unfinished pieces into 2019, to keep my head up and to keep going, even at my snail’s pace. I will be taking a rest when I need it. I hope you can too. Xo.

Beyond Bubble Baths

I was honoured to have my story chosen to be shared on the This is Brave website.  This beautiful site was created to foster community and share stories of women’s mental health.

I’ve written snippets of my travels in mental health since my cancer diagnosis.  This story is a reflection on all I’ve learned the past 18 months about taking care of myself – more than that – about unpacking why I actually didn’t like myself very much.  Self-loathing is a horrible thing.  As Arthur Frank says, it is me writing as the Wounded Storyteller but now more from my scars than my wounds.

I tackled the old notion of self-care in this essay and called it Beyond Bubble Baths.  I also hope to put an arrow in the heart of the whole narrative of having to be brave and strong when you have cancer (or a kid with a disability or become a mother or your marriage breaks up or when you are grieving or during any other significant life event).  There is great pressure in our society to ‘present well’ ‘be strong’ ‘get back to normal’ because of people’s own discomfort with sitting with someone in their pain.

This is Brave is a popular Instagram site and it features the stories of younger moms.  I’m 50, hardly a young mother, so I wrote about what I wished I had known about loving myself as a younger woman and how that would have changed the way I mothered my three children.  I would have allowed the hard emotions, both in myself and my kids.  This was hard to admit and then write.  As I said, my children have had a strong mother, but not a happy mother.  For that I feel deep regret.

Part of the This is Brave experience is that the writers are gifted a photo shoot.  Although the idea of getting my picture taken made me break out in a fear sweat, I gamely drove out to the studio.  Julie from Julie Christine Photography was lovely and immediately put me at ease.  It is weird to see photos of me as usually I’m the one taking photos of my family (or of food).  I know that having photos of myself mean that I’ve stepped out from beyond my various roles (of mother, wife, children’s health advocate) to become more visible on the road to fully embrace myself.

Here is one of my favourite pictures. I am wearing pink because I hate the whole breast cancer awareness crap (also known this month as Pinktober) and I’m taking pink back. It is a sad picture because it is okay to be sad.  If you feel sad that means you have a chance to feel joy too. xo.

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today my therapist fired me

You knew what you had to do…
and the road full of fallen
branches and stones.

But little by little…
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own.
-from Mary Oliver’s The Journey

Eighteen long months ago, cancer brought me to my knees.

In a desperate attempt to feel better I tried many things, including obsessive reading, soothing music, meditation, yoga, poetry class, art therapy, walking, podcasts, eating and not eating.  I searched for and found a good therapist. I was in such bad shape last year, wracked with panic, doom and depression, sometimes I saw her up to once a week.

I did hard inner work, including looking at trauma, my family of origin and all that shit.

Today my beloved therapist told me she’s confident I’ve done the work and it is okay if I stop seeing her. I’ve decided I’ll take her words as a compliment instead of a rejection.  I’ll move to maintenance mode and know she’s part of my safety net if I fall again.  There should not be shame in needing others.

Cancer healing is a slow and arduous process. I was privileged enough to take time off to recover and I can afford the costs of therapy, which not everybody can. I’m grateful for that.  Oncologists, insurance companies, employers, families – stop rushing people to get back to ‘normal.’  There is no more normal once you’ve had cancer.

Cancer is not a gift. I’m not fixed. I’m not better than ever. I will always be a person who had cancer.  I think I’ll mostly be okay. I’ll surely stumble again in my life – whether the cancer comes back or not – but I hope I now have the awareness and the tools to slowly get back up with love and support.

I wish administrators, clinicians and the world would realize that emotional healing is as important as medical treatment. Cancer is so much more than cutting out tumours. It is a life-rattling, life-altering experience. Maybe that’s why so many people in my life ran the other way when I was diagnosed. It is terrifying, both for me and my family and friends who steadfastly walked by my side.

Mental health matters for all kinds of recovery and it should be valued and funded appropriately. Take note, cancer agencies and cancer hospitals with skimpy budgets for the emotional care of patients.  If you don’t consider emotional care, you aren’t caring for patients.

I promise to use my big mouth and my modest platform to keep squawking about how crucial it is to consider the whole messy beautiful person in health care.  Health care is despairing today.  It needs an strong infusion of compassion and empathy – for patients, families and staff and physicians alike.  Let’s turn towards each other’s pain.

Twenty Days Last May

collage

I took one photo for every day of the twenty days I was in radiation treatment last May.  Here’s what happened when an artist friend generously taught me how to create a collage.  These are images from a time I’d rather forget.  But those twenty days are etched so deeply inside of me that my only way out is to weave that time into my very being.

This is why telling our stories – in whatever form – is so important.  By gathering our experience into a story, we make sense of random or traumatic events.  It is only then that we begin to heal.

moms + mental health

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this super cool pin is from http://www.noraborealis.com

I hesitate to write about the effect of having a child with a disability has had on my mental health. This is for two reasons.  First, my thoughts are kind of a mess.  The second reason is because this child, my son Aaron – who is now 14 years old and has Down syndrome – is a beloved and wanted child. I fear adding to the bad rap that haunts disability.  The truth is that the important stuff in life is hard. If it wasn’t hard, it wouldn’t be important.

(Please note that I write about moms because I am a mom, so I don’t assume I represent other moms, people with disabilities or dads or brothers or sisters.  Their feelings are valued and significant too.  But their stories are different from my story.  Here goes…).

If I am honest, being the mother of any child is fraught with looming and inevitable loss. You help them attach to feel secure in the early years only to gradually let them go. This is heartbreaking work. There are many joyful and painful aspects to being a mother in general and being the mother of a kid with a disability is no exception.

When Aaron was born, I had the added work of grieving for the baby I expected in order to accept the baby I got. I had many years to figure out with my other children that there’s no such thing as a perfect child. (Usually this truth smacks you in the face in adolescence when the school principal calls you). With Aaron, the realization that no child is perfect came when he was a baby – instantly, right at his diagnosis.

This grief has faded but it has not entirely gone away. Some parents feel sad on their child’s birthday. I feel sorrow when I spot a group of teenage boys at the mall. Aaron is not part of that group and this causes a sharp pain in my heart.  I think this has to do more with me than him, as I have always felt left out and have struggled to find belonging. Unwrapping my feelings from his feelings is difficult but essential work.  I also grieve for my older two children who have grown up and left the nest.  I miss them a lot. There is loss there too, but in a different way.

Having a child with a disability makes me feel particularly vulnerable. In a world where we are supposed to be strong, feeling vulnerable is extremely uncomfortable. This is especially true if we’ve adopted the ‘mama bear’ identity to advocate for our children.

People tell me I’m brave and strong. This is a façade. Mostly I am scared and weak. I cover up my vulnerability with anger that is specifically directed as outrage at the health and education systems. (See my Twitter feed for evidence of my outrage).

Many families get caught in the ‘busy trap’ to avoid feeling pain. They sign their child up for all the therapies in an effort to have the ‘best kid with Down syndrome ever.’ We did this too.  Being self-aware of the reason you engage in therapies is vital: is to help your child be the best they can be, or is it to fix them, to make them as ‘normal’ as possible?   Be careful, for you can lose both you and your child in the fixing. Accepting all your children for who they actually are – not for who we want them to be – is a long, never-ending journey.

There can be struggle to make meaning. Some of us try to change the world in an effort to find purpose from our child’s diagnosis. This is exhausting. The world doesn’t want to change to accept our children. We can only change ourselves. It is our job to equip all our children the best we can to allow them to grow up in a way that they are true to themselves – disability or no disability.

In my humble experience, the most important thing you can do for your own mental health is to allow yourself to feel all your feelings. Surround yourself with people who love you unconditionally.  Don’t be afraid of being still.  Find other parents and lift each other up. Be as kind and gentle with yourself as you are with your own children. All this can help you find peace in your heart. (Note: I struggle to find peace in my heart every single day.  This is okay because I’m perfectly imperfect too).

I am grateful to Dr. Yona Lunsky for inspiring me to speak up about my mental health and to write this essay. xo.