the mama bear

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A wise physician once told me that she teaches medical students anger directed at you is often fear instead.  I think understanding what lurks behind anger is key to working with families.  Well, key to working with anyone actually.

I was in a meeting at work this week when my cell buzzed with a call.  Twice.  I left the room to answer the phone.

I missed the call and listened to the voice mail. It was my son’s school phoning.  There had been an ‘incident’ at the school, and no he wasn’t hurt, nobody was hurt, but could I call back.  I looked at the time.  It was 25 minutes until dismissal and my husband was due to pick him up.

Here’s what I felt deep inside in quick succession: a flush of shame, a touch of annoyance, followed by a slow burning rumble of rage.  The shame of getting a call from the principal.  The annoyance of being pulled out of a meeting, assumption to call ‘mom’ first, when they know damn well my husband works from home and the dismissal bell was about to ring.  I called my husband and asked him to head to the school early, and went back to the meeting, my face flushed and my heart rattled.

After finding out the details, I felt agitated at the escalation of an event that the school termed an ‘incident’ that I would call ’12 year old boy mischief.’  This agitation mixed with the shame and annoyance very quickly devolved into anger.  I carried around this anger – which felt like a suitcase full of rocks – well into the evening.  I went to bed early at 9 pm to try to rid myself of the day.  Two days later, I can feel the residual of this rage.  It feels like a bad hangover.

If I pause to unpack that suitcase full of angry rocks, I find something interesting.  Buried deep inside that suitcase is shame.  The shame of being a bad mom for having a kid who is sitting in the principal’s office.  The shame mixed with guilt about being at work (maybe if I was at home, he’d wouldn’t ‘misbehave?’).  The shame about not being able to magically and telepathically control the behaviour of my child while he was at school.

All I could do when I got home was to hug my son and tell him I loved him even when he made mistakes.  Even when other people were angry at him.  I told him that I made mistakes too.  I told him tomorrow was another day.  His eyes were downcast, his mouth was etched into a frown and I knew he felt the shame too.  This made me even more angry.

This is where the Mama Bear is born – from this suitcase full of anger.  So educators & health professionals, the next time you encounter an ‘complaining’ dad, a ‘hysterical’ mom, a ‘crazy’ parent, a ‘difficult’ caregiver, stop before you label them. Recognize that this anger comes from a biological need to protect our loved ones.  Underneath that is sometimes shame, fear and hurt.  (Well, sometimes we are just MAD.  AT YOU.  But that’s another blog post).

I’d suggest taking the time to pause and try to understand the meaning behind the anger, to garner some empathy in your heart and then to demonstrate some compassion.  Try not to label, blame, finger-point or counter-punch with anger back at us.  Poking an angry Mama Bear in the eye with a stick absolutely does not help.  Instead, a little bit of kindness will go a long long way.  The most important thing to consider is:  how might I feel if it was me?

the damn silos

silos

There is a lot of talk about The Silos in our world of kids with disabilities.  The first few weeks after we moved to British Columbia, we were in a rosy state of honeymoon.  We had found Aaron a school that accepted and believed in him, and all was well.

Then reality started creeping in.  In Alberta, I had childcare, respite, a pediatrician, a pediatric dentist, an audiologist, a psychologist, an optometrist, a behaviour coach, Special Olympics, other adapted recreation programs and a social communications program all set up for our boy.

In this new province, I am starting from scratch.  It feels like when Aaron was first diagnosed, but this time (thankfully), I’m not in the midst of thick grief and juggling a newborn baby and his young siblings while I’m filling out forms and running around to appointments.  I’m 12 years wiser, but still incredibly frustrated because I know the people in the systems can do better.    

Here’s what I have written in my ‘to do’ scribbler:

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Eight weeks into living here, and this is a MESS.  I can’t secure funding for after-school care for Aaron, and the daycare won’t even consider him without funding.  For some reason, the school wants another audiology test, even though he had one in January.  The psychologist wants to give him an IQ test so he can get funding for high school (um, NO). Our awesome nurse coordinator back in Alberta requested a referral to a pediatrician here, but I haven’t heard anything back.  We have to go to yet another ministry to apply for respite funding, but I haven’t heard back yet either.  Back in Alberta, the ‘Family Support for Disabilities’ (I put that in quote because they don’t actually support families) people with the Ministry of Human Services rejected our application for funding for Aaron’s dental surgery that happened in February because we did not get all their (stupid) forms filled out and signed before surgery  (plus they sent me the wrong form to begin with and I got it all signed and then had to start all over again when they sent it back, rejected) because he had surgery very quickly because we took a cancellation spot.  We are waiting to hear if he’s been accepted for a week long overnight Down syndrome summer camp (thankfully my lovely Alberta pediatrician filled out the medical form for us because we do not have a pediatrician here yet – see above) but the Nursing Director has to ‘approve’ him.  To travel on the ferry at the ‘disabled’ discount, we have to fill out a form proving his disability and we do not have a doctor to fill out the form (see above).  I am waiting to hear if an awesome-sounding summer day camp will accept him, because he’s 12, not 13.  People don’t return my calls or emails, show up for our pre-scheduled phone meetings, and I spent hours each week just following up on something I’ve already initiated.

This is what The Silos look like in real life.  And this is for a kid who only has Down syndrome – he does not, thankfully, have any active medical concerns right now.  (Although he did get bit by a tick last week, but seems fine thank goodness because he does not even have a doctor to go to).

This whole mess is infuriating and frustrating.  They send me forms and I dutifully fill them out and mail them back and then they send me a letter telling me to refill out forms that I’ve already filled out.  I am so sick of filling out forms and photocopying paper and walking to the mailbox because nothing is electronic and spending my days off in ‘intake’ meetings repeating the same information over and over about my child and convincing them that he’s either:  not very disabled or super disabled so that we can access their programs.

And I actually WORK in a children’s hospital and have some understanding about how to ‘navigate’ this damn system. We can even pay out of pocket if we have to. (And what of the families who do not have my advantages?  I fear they are just lost forever, laying at the bottom of some Damn Silo).

But when I consider all I’ve written above, I just want to crawl back into bed.

WHAT IS THE SOLUTION TO THE SILOS?

Yes, please, leaders in health, education and child and family development, please keep on meeting and chipping away at these Damn Silos.  This gives me a glimmer of hope for the future, but I’m sad to report that change is not going to happen in Aaron’s generation.  I really hope it does for families behind us in our journey.  These Damn Silos took decades to carefully construct, and they aren’t going to be dismantled anytime soon.

Here are three simple things that I firmly believe we need:

  1. Connection with other families.  If you are working with a new family who has a new diagnosis, or who are new to an area, please find a way to connect us up with other families in our world.
  2. Family leadership and advocacy skills.  Teach us how to effectively make our way around these Damn Silos.
  3. One person who will actually help us. Nobody helps us.  Or, they will help in their little piece of The Silo and then they are done with us.  Or they say they will help us, but then they don’t return emails or phone calls – so that’s not really any help at all, is it?

Note:  these must be done in conjunction – just hiring a ‘navigator’ isn’t going to help if we cannot do things ourselves or be connected with our peers for support.

In future blog posts, I will provide more reflective insight into these three solutions.  I am currently neck deep in the Ranting Stage of Frustration.  I will pop back up once I’m able to be more constructive.  Right now, I’m going to put my head down on my desk and have a little sleep.