what inclusion means to me

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I’ve been agonizing over preparing a presentation all week.  For creating a talk is like crafting a story – it is carefully pieced together to engage the audience early on, to create a safe space for listening, to allow them to feel.  This is trickier than you might think.  I say this from hard-fought experience of crashing and burning onstage – misreading your audience is the absolutely worst thing you can do when you are behind a podium.  I live in fear of it.  This is a hell of a way to make a living.

I was asked to speak to all the teachers at my son’s high school about What Inclusion Means to Me.  There would be about one hundred educators in the audience on their Pro-D day.  I sweated out my approach, talking to the teacher in the Access Program (Burnaby’s special ed) who had kindly recommended me, the physics teacher who was the organizer, and many families who had kids with differences in schools across the provinces.  I was desperate to understand my audience, to not misstep, to represent other families well, for I had a lot of skin in the game.  This is the high school where Aaron would be for the next six years.  I could not screw this up.

I had spoken once before to a teacher/parent audience on this same subject, almost three years ago in Alberta.  My stumble then was not to include any research about the other kids in the school – the ‘typically developing’ kids, many of whom were travelling on a strong academic path.  One mom had angrily protested from the back of the room:  your kid is taking away from my kid’s teaching time!  I have recognized over the years that it is crucial to address barriers and concerns that the audience is holding early on in the presentation, for if you don’t, they hang onto those concerns during the entire talk, and this is a barrier to the listening.

This time I was more grizzled and wiser (but alas, still not perfect – is there really such a thing?).  I drew upon others for expertise in my talk.  I don’t know one thing about adapting or modifying curriculum, so I showed Shelley Moore’s great bowling video.  I leaned on Ian Brown’s wisdom about the value of people with disabilities.  The moms from my Family Inclusion Group Facebook page kindly offered up some wonderful quotes about our kids being brave, and presuming competence.  I remembered the young man, Ryan, who has autism and graduated with my daughter three years ago, and read that little essay.  Two local family leaders, Karen Copeland and Suzanne Perrault, helped me immensely with pep talks and information. I was very aware of not being self-serving – not only concerning myself with my own son’s experience, but with his colleagues’ experiences, too:  those who used wheelchairs, those who were non-verbal, those identified with ‘behaviour’ challenges.   I had many people behind me in spirit for this extraordinary opportunity:  for a mom taking up a morning in a high school’s Pro-D day is a rare sight indeed.

And what does inclusion mean to me?  In the end, I talked about our journey with Aaron – from when he was first diagnosed (the baby we expected was not the baby we got) to my struggles with my own fears about people with disabilities when Aaron was born, embedded in my head from my junior high days in 1974 (if you are going to have a stereotype, at least have an up-to-date stereotype).  I acknowledged the good work teachers do – how busy and exhausted they are too, and asked them to reflect on their why – why they chose teaching.  I talked about how inclusion was so much more than academic inclusion inside a classroom, how it was about inclusion in the hallways, at lunchtime, at school events, in sports, in extra-curricular activities.  I invited the audience to think of one way educators and the other students could include the kids from the Access Program in the school, no matter how simple:  learning the kids’ names, giving high fives, starting up a Buddy program, picking one thing from their class lesson to teach them each day.

My goodness, as I write this out, I realized I covered a lot of ground.  I’d had better practice what I preach about presentations, and that is:  Identify your intention.  Pick three key messages.  Know thy audience.

My intention was to touch hearts to change minds.  My key messages were about the value of children with disabilities (the disabled do the work of love, says Ian Brown), expanding the definition of diversity to include different abilities, and to point out how we are not preparing the high-achieving students for the real world if they do not know people who are ‘the other.’

I had to pause a few times during the talk to catch myself from crying.  This topic is deeply personal to me, as Aaron’s school experience is everything to us.  We chose to live in Burnaby based on the school district.  We bought a condo close to the school.  I resigned from my job to be more visible and available to support his school experience.

Scanning the audience, I knew others were crying too.  Maybe they had someone with a difference in their family.  Maybe they were remembering the feeling of being left out.  Maybe they were triggered to recall why they chose teaching.  At the end, the applause was more than polite, and I had a patient line of teachers waiting to chat with me.  It tears me up to think about how much these educators want to reach all children, but sometimes they just don’t know how.  This desire is everything.  Change happens with just one step at a time – the first step is the most important one.   This is the beginning of belonging, one high five at a time.

Inclusion to me means finding love + belonging.  It means taking the time to understand another person’s perspective, to feel empathy, to demonstrate compassion.  These are the exact same messages I share with health care audiences, as I’ve realized that these concepts are deeply universal.

In the end, for me, everything always circles back to Raymond Carver:

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Beloved on this earth.  That’s what I want for my children, for myself, and for you too.  xo.

inclusion or connectedness

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a typical photo of my not-so-typical teenager

Aaron is heading to high school in September.  This transition has caused me a great amount of personal grief – some of which is because of my anxiety around the switch of schools, but mostly because he is moving from a model of inclusion to a model of special ed classes.  We have fought hard to have him included in his community school setting for the past 11 years.   This has been exhausting work, but don’t think I haven’t noticed the erosion of inclusion over the years, starting in grade 3, when he spent most of his time in the principal’s office (this was an exceptionally bad year which culminated in a change of schools), to more and more time spent in resource rooms, with other kids with ‘funding,’ with Educational Assistants, and gravitating to hanging out with considerably younger kids at recess time. His peers pretty much left him behind in the dust, and while I can (and have) railed about this in the past, this is his – and my – reality.  Despite my constant pleas to provide adapted curriculum, delivered in the regular classroom, teachers struggled with figuring out ways to include Aaron as he got older and his gap with the grade’s curriculum widened.

How I wish that all teachers were educated to be special ed teachers so they had the toolkit to teach all kinds of kids – disability or not.  How I wish their classroom sizes were smaller and they had more prep time to adapt lesson plans for kids needing extra support.  This is not the case in British Columbia (nor Alberta, in my experience).  It is what it is.

Today I visited the special ed program in his new high school.  I arrived right after lunch, and it happened to be the students’ mindfulness time, called MindUP.  This involved a few minutes of listening to some beautiful classical music, followed by a guided meditation led by one of the Educational Assistants.  I stood with my eyes closed at the back of the class, basking in the peace.  A small epiphany floated by in my clear head.

What if my past discomfort with having Aaron in a special education class was due to my own discomfort with kids of differing abilities?   What if I had been dismissive of other kids with disabilities, as so many other parents of typically-developing kids are of Aaron himself?  What if I thought he should be in a ‘regular’ classroom to force him to act as ‘non-disabled’ as possible?  This awareness hit me like a sack of bricks, my eyes stung with tears and I hung my head in shame.

My past year working at a children’s hospital that cares for and serves children with disabilities has been a gift to me.  There, I have met many awesome families who have super children with different kinds of disabilities.  It has been an honour to be welcomed into their lives.  In getting to know kids who have CP, Autism, rare syndromes, and brain injuries, I have confronted my own values and feelings about kids with things going on other than Down syndrome.  This has been both humbling and hard.

I’ve realized that one of my trepidations about having Aaron in a special education class has been related to my own fear of the other children.  This ignorance comes from exactly the same place as so many families in Aaron’s schools over the years who have shunned him and our family.  (In our experience, the more educated and socio-economically well off the family, the deeper the shunning has been).  But I, too, have fell into this trap of stereotypical thinking.  Shame on me.

Today, after the meditation in the class, I opened my eyes and saw a group of diverse young people, all making their way in the world.  Some communicated with methods other than speaking, others used mobility devices to help them get around, and other kids had figured out ways to deal with our overstimulated sensory world through rocking or talking to themselves.  But of course they are all kids too, just like Aaron (who can be challenging to understand and who likes to hum and talk to himself in third person).

I am thankful for my workplace that has blessed me with the ability to reflect on my own values.  Last week, I met with a very wise mom, who shared with me – what if high school is really not about curriculum, but it is about Aaron feeling confident?  What if it isn’t a matter inclusion or segregation; it is a matter of connectedness?

The older I get, the more I realize I don’t know.  Bring on high school, in whatever form it is offered.  It has taken me a long time, but I am ready to put my own blustering ego aside to support my boy to finally find somewhere he truly belongs.

he’s nobody’s mascot

IMG_8757Every once in a while, there is a video floating around Facebook of a student with a disability – often Down syndrome – who is a member of a school sports team.  This typically means that the young man is assigned as a manager or an assistant or has other duties – on the bench.

I find these stories both bitter and sweet.  Bitter because I wish the boy was right on the field or on the court just like the rest of the team.  Sweet because he’s still part of the team, and this seems to make everybody feel good (including, I’m sure, his parents, which if they feel anything like me, are desperate to find their son a sense of belonging).

When Aaron’s school principal suggested he be on the grade 6/7 boys’ basketball team, I hesitated, immediately suspicious.  “He’s not going to be happy sitting on the bench,” I said.  (And neither would I).  “Oh, he’ll play,” the principal assured me.  And play he does.

I wake Aaron up an hour early every Monday morning to take him to school for an 8 am basketball practice.  “DO NOT GET OUT OF THE CAR,” he says when I drop him off in his very typical 12 year old boy way.  Games are Tuesdays after school, and I am permitted to sit on the gym stage and watch him.  Occasionally he waves at me or brings me his water bottle for a refill.  Otherwise, he’s all in on the team.

Every game, he has gotten at least three shifts.  He keeps up with the other boys, despite his bad knee and slower response time, and adjusts quickly to the constantly shifting direction of play on the court.  His team members call out advice to him on the court (Defense Aaron!  Shoot Aaron!), but otherwise he holds his own.  Depending on who is on shift with him, he might get the ball passed to him.  Other kids avoid passing him the ball, even if he’s wide open, but I try to shrug it off. This happens to other players too. He’s often chosen as the kid who throws in the ball from the sideline so at least he gets his hands on the ball.

Today was their third game. On his first shift, Aaron got his first basket.  It went down like this:  he intercepted a long pass, but the ball slipped from his fingers.  The player on the other other team recovered it and passed it back to Aaron.  I’ll repeat that:  the kid on the other team passed the ball to Aaron.  All the boys stood patiently for Aaron to line himself up to throw the ball.  Shoot.  Swoosh.  Score!

The crowd erupted.  Yes, I shed a tear.   His teammates high-fived him.  Aaron gave me a big thumbs up, his face plastered with a grin.  Is this inspiration porn?  I don’t know, and I don’t care.

I love my children equally, but differently.  I remember the first time my now-22 year old son packed up his drums for his first real gig, and when my then-13 year old daughter – a crackerjack player – made the competitive soccer team.  I was thrilled then too.

Aaron’s basket is different in this way:  his team, and the other team made some natural adaptations so that he could score.  Yes, this is probably because Aaron has Down syndrome.  But, to be truthful, that doesn’t matter.  These young men demonstrated compassion for a fellow player.  They simply helped someone who need a hand up. Hyper-competitive, dog-eat-dog world be damned.  I think those boys demonstrated a kind of character education that would make their parents proud.

And to me, that’s more sweet than it is bitter.  Win-win-win all around.  Go Aaron Go! (Edited by Aaron to add:  HELL YA).

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?

all that dread for nothing

I still think this is a good idea.

I still think this is a good idea.

The dread started when I received the slip home from Aaron’s school about his first IEP meeting.  It said:

___I will attend my child’s IEP meeting on Thursday October 29 at 3:05 pm
___I will not attend my child’s IEP meeting.

How’s that for choice?  Then started my bad mood, my grumbling and general poor disposition about this impending meeting.

After a few days immersed in dread, I realized that my attitude was everything.  At my work, I often talk to families about communicating with professionals using a positive approach.  I use this quote:

“A prickly personality can advance a magnificent cause, but why make it harder?”

I could walk in all pissed off about the lack of choice in the date, or I could take care of myself, connect with others for support, and walk in with an open mind.  I decided to adjust my standard:  if the educators assembled seemed to care about Aaron and his learning, I would put aside any preconceived notions and biases based on how the meeting was scheduled.

I confided in a few friends about the IEP meeting.  It helped to talk about it with others.  I made sure I went to yoga class at work at lunch time.  Our instructor was kind enough to adjust her session to centre on relaxation and calmness, I left feeling serene.   I carried this feeling into the IEP meeting.

On my way home, I stopped at Starbucks and picked up a (dirty) chai latte, which served as my crutch during the meeting.   (Sounds silly, but clutching that coffee was a comfort to me). I kept my work clothes on to help with credibility.  It seems ridiculous that I feel I have to do this, but I think it helps.

My husband, Mike, (perhaps the most rational man on earth) was there with me.  Showing up as a team helped feel not so outnumbered, and we served as moral support for each other.  Me a ball of emotion; Mike the voice of reason.

Mike said he had never seen me so calm for a school meeting.  I do usually cry (and that’s ok too).  I didn’t cry today.  I felt prepared, but not a bundle of over-prepared anxiety – which generally includes anticipating what could go wrong, what offensive things people might say and how I would respond.  I had prepared myself by doing what I could do to remain open-minded and to dump my biases before I walked into the room.

All the educators there were respectful and engaged.  They solicited our feedback and we felt part of the team.  They had pre-populated the IEP form, but adjusted it when we told them certain goals were and were not important to us (spelling – no.  printing – no.  keyboarding – yes.  reading – yes).

When we walked out, I felt respected and listened to.  Most importantly, I felt as if they cared about my boy and his learning.  And that’s all that really matters in the end.

All that dread for nothing (please remind me of this before the next IEP meeting in May).

i know nothing

knownothing

I was awake at 3 am this morning, fuming about my son’s school. They have a habit of asking the Resource Teacher guidance about what to do about Aaron, making a decision themselves and then merely informing us afterwards. Because Resource Teachers know my child best, don’t you know – besides, all these ‘special needs children’ are all the same. (sarcasm intended).

The fact is that we know Aaron best. In fact, Aaron knows Aaron best, and we are working on helping him speak up more effectively for himself.

Decisions should never be made on our behalf. We should be involved in the whole decision making process, as the Resource Teacher is not the expert of our son.

Then this morning, my own health authority posted a position for a Family Advisor position for their Neonatal Program. I will be the first one to stand up and applaud this hiring. Family and patient advisor positions have been exceedingly rare in Canada, but I see the tides are changing.  I am grateful to be the Family Advisor at Sunny Hill Health Centre for Children in Vancouver.  I also learned so much from my four years as the Family Centred Care Consultant at the Stollery Children’s Hospital in Edmonton.

I’ve been thinking about what makes an effective Family Advisor. I realized there are many parallels between Resource Teachers and Family Advisors. Are either of us experts of other people’s children? NO.

Family Advisor can only answer the question of what would the families want with an answer from our own personal experience, anecdotal information from what we hear from families, or what the research says.

My purposely vague answers are – How would you feel if you were the family? Why don’t you ask the families themselves?

When I get asked – Should we do this or this for families? My answer is: It depends.

There is no one answer to family preferences – for all families are as different as snowflakes. I’ve learned this the hard way. Early in my career, I concluded that an information binder for families was a great resource.  Then I asked a family member who actually received the binder.  She said to me: I hate that binder. She offered a bucketful of constructive advice to improve it. This was a good and humbling experience for me. I should never make assumptions (for they make an ass out of you and me).

A physician once told me: there are no always or never in medicine. I’d say this is true with partnering with families too. The only always for me would be: Treat people with respect. Be kinder than necessary. Listen to people. Consider them capable. Demonstrate compassion.  Offer choices. Share information.

I’m excited to have a colleague in the Family Advisor world in Vancouver. My hope for them is that their hearts are open, they have the ability to say I don’t know, they are patient & kind, they honour both family and staff stories, they practice non-judgmental listening and they don’t try to fix people.  Pausing and gently taking the time to understand why is such a powerful approach for this position.

For in my humble opinion (and remember I’m only n=1), that is what this type of position is all about.  Family Advisors (and Resource Teachers) are the experts of nothing.

Edited to add wisdom for Family Advisors (both paid and unpaid) from Karen Copeland:

  • We can create space for families to share their stories when they are ready.
  • We can ask why do you think that is questions to staff, and engage staff to be ready and open to hearing the family voice.
  • We can guide health providers to ask the people who know best – and that’s the children and families themselves.

the walking to school thing

IMG_7175There is a parade of kids walking to school here in Burnaby – the city next to Vancouver on the Lower Mainland, where we live.  This astonishes me.

The kids are as young as five, some walking with an older sibling, and the vast majority of kids in grades 4 and up are walking to school without their parents.  Some are on bikes, others on skateboards or scooters.

For Aaron and his bad knee, the 17 minute walk to school is quite the hike for him.  But we’ve been walking home after school on my days off, and this morning, we agreed to head out by foot at 8:30 am.

I remember our beloved pediatrician, a long time ago, talking about kids with Down syndrome and weight.  ‘Forget about diets.’ she said.  ‘Keep your kids active instead.’  That’s been our motto since our move here, and Aaron is slowly starting to embrace it.  We try to walk as a natural part of our day – I park far away and we walk to our destination, or he accompanies me reluctantly (it helps if there are sticks available to him) to the mailbox or grocery store.  But he’s moving a heck of a lot more than he ever has in his life.

The mild weather helps.  As does the predisposition of Vancouver-types to burst outside whenever it isn’t raining.  When we lived in a much harsher climate in Edmonton, motivating Aaron to get outside 7 months of the year was a hard sell.  He didn’t like the cold (and neither did I) and he was terrified of falling on the ice.  His bad knee precluded him from skiing, and we were stuck being aimless shopping mall walkers for most of the year.

We did live across the street from Aaron’s school in Edmonton.  He walked to school every day (a slow 5 minute walk for him) – first with one of us, and then gradually by himself, after we accompanied him across the busy street.

The street, a normally quiet residential street, became a freeway at 8 am and 3 pm.  People honking, pulling u-turns and speeding off after dropping their kids off at school.  I bet on average, 10% of kids walked to school.  The rest were dropped off.  We can blame the weather on some of this, but in response to the question:  why aren’t you walking the three blocks to school? Parents answered:  ‘Because of the traffic.  It is too dangerous.’

The irony is that those 90% of people were the ones who contributed to the dangerous traffic.  I asked the school and the city repeatedly for patrols or traffic signs to be placed at the busiest intersection.  ‘Too dangerous’ they said.  Too dangerous for adult patrols, but not too dangerous for the little kids who dared venture to school on foot.

The other barrier to walking to school in Edmonton is the death of the neighbourhood school.  So many parents choose or are mandated to drive their kids across the city to schools for special academic or sports programs.  In Burnaby, they’ve kept the small local school model.  All kids who live in the neighbourhood go to their local schools.  The catchment areas are all small – less than 6 blocks around the school – and so all kids are within walking distance to the school.

Here, all the Burnaby schools have 30 km/hour school zones which are monitored by the RCMP. People truly respect that speed limit and slow down accordingly.  Adult pafrogger,_the_officialtrollers are positioned at the busiest intersections.  A lady, Miss Sheila, is near our school every morning and every afternoon, and she walks out right onto the road with her stop sign to make sure the kids get across ok. This means we no longer have to play a pedestrian version of Frogger when we cross the road.

Here’s to promoting communities and schools that enable kids to walk back and forth to school.  Besides encouraging activity, the walk allows opportunity for Aaron to interact with his classmates walking home and to chat with me about his day. Today he gleefully played the age old, ‘step on mom’s shadow’ game. By the time he reached our front door, he was relaxed and happy.

Kids walking to school.  Win, win, win for everyone.