his tell-tale heart

tell-taleAt lunch yesterday, Aaron was busy trying to us something he recently learned in English class. He said: the guy had a bird eye! A vulture! His heart was beating out of his chest! He was buried underground!

It took some Googling to figure out what he was talking about. He was referring to Edgar Allen Poe’s short story The Tell-Tale Heart.

This is what happens when you include a kid with a disability in a high school English class. Did he ‘get it’? Yes, he got it more than I did – me with my fancy English university degree, me who doesn’t know much Poe at all.

This isn’t the first time this has happened. A few weeks ago, Aaron arrived home from school with his journal.   In it, he had printed: We learned Romeo and Juliet today. It is a superb story by William Shakespeare. Later, his teacher told me he took a comprehension test about the play. He understood everything: who loved who, who hated who, who died. This is a kid who loves drama in real life. Of course he’d be drawn to it in literature too. He is his mother’s son.

Beth Foraker wrote a lovely piece on her blog about her son (age 14, who also happens to have Down syndrome) and his love of Macbeth.

There is a lot for both educators and parents to think about with these anecdotes. What preconceived notions do we possess about what kids with differences can and cannot learn? I thought about all the myths I carried about Down syndrome when Aaron was first diagnosed: that he would be mindlessly happy all the time (WRONG), that he wouldn’t understand sarcasm (WRONG), that he wouldn’t be a consumer (WHO TOLD ME THAT? SO WRONG). Did I think he would understand Edgar Allen Poe or Shakespeare? I hang my head in shame – no, this version of reality had not crossed my mind.

This holiday season I am thankful for Aaron for having proved me wrong, over and over again. I am grateful for educators like his English teacher. You never know what this kid might learn – we all just have to give him a chance. As Beth points out, this means giving our kids access to curriculum at school and access to rich experiences in life. She so eloquently says: Because we can never guess or know what will touch their hearts and speak to their soul.

good at basketball

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Today my youngest son won the Most Valuable Player Award for his school’s basketball team.  He was chosen by his coach to receive the most prestigious of all awards because he never missed a practice or a game, gave his best effort every time, demonstrated a positive attitude and never ever complained.

When Aaron’s name was announced, the crowd erupted in cheers.  A young girl came rushing up to Aaron to give him a hug.  (I spoke to her Educational Assistant afterwards and she said she and Aaron are great friends).   I was in the audience and I’ll admit that I cried like a little baby.

“I am FAMOUS!” was Aaron’s initial enthusiastic response.  Afterwards, when asked why he won the award, and he shrugged and said, “because I am good at basketball.”

Recently I wrote about the whole Mascot Thing and how Aaron was truly part of this team.  I’m not going to analyze his award and think:  Was this tokenistic?  Did he get it because he has Down syndrome?

No.  He is MVP because his coach decreed so.  Period.  Explaining it away because he has a disability is wrong. Why would I diminish this recognition for him?

I cried because I am proud of him. I cried because he’s my Most Valuable Player too. I cried because he experienced belonging as part of of a team.  I cried because his coach gave him equal playing time at every game. I cried because someone believed in him.  I cried because it hurts his knee when he runs, but he ran his fastest every game.

Yes, I also cried because sometimes my life is hard.  I cried because of all the stares in the mall, the questions about prenatal testing, the lack of mom friends in the school yard, the fights to get funding, the forgotten birthday invitations.  Did I selfishly cry because of all the struggle and society-induced pain?  Maybe.  But screw all that today.

Aaron’s victory is 100% his.  Nobody gifted to him.  He won it because his principal and coach gave him the opportunity to play.   He earned it fair and square.  He won it because he’s good at basketball.  He won it because if you crawl out of bed early on Monday mornings to attend 8 am practices, carefully pick your water bottle and basketball shoes, pack your own gym bag, listen to your coach, show up to every game, work hard in spite of your limitations and fully pour your heart into your passion, one day you might be lucky enough to be recognized with an award.

To me this MVP award is a simple reminder that life is generous and sweet.  Tonight, we celebrate Aaron.  Hamburgers & fries all around!

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).

the dreaded christmas concert

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Say you have a kid like I do who has mobility challenges and issues with noise, people standing to close to him, bright lights, or changes in routine. The annual school holiday concert can be a real cause for dread and sleepless nights.

I calculated that I’ve attended 16 Christmas concerts in my lifetime of being a mom. The last seven years I’ve attended our youngest son’s concert. Aaron has Down syndrome, auditory sensitivities and doesn’t appreciate people standing “in his grill.” He struggles with climbing stairs and standing for long periods of time.  He also thrives on routine, and does not appreciate changes in his environment. Each year I hold my breath, and trust that the teachers will support him to be a full participant in the concert. This was thankfully true for last night’s concert (see picture). But success does not happen without advance planning from both parents and teachers.

When Aaron was in kindergarten to Grade 3, he met the expectation required for the little kids at the school. He climbed up on stage with his classmates, and searched the audience for a familiar face. Then he waved frantically at us, had a hard time standing still, and fidgeted around while occasionally flashing us with his belly as he lifted his shirt up. He stood at the very end of the row of students, and his Educational Assistant was in the wings to redirect him if needed. He fell within the general social expectation for him as a younger kid, and all was ok.

He’s now in Grade Six. Lifting his shirt to show his belly in front of an audience of over 1,000 in his huge school is now not within the social norms for an 11 year old. Now that he’s older, my anxiety level with Christmas concerts has risen.

Here’s what I’ve figured out over the past three years in our new school: support from the music teacher makes all the difference. Aaron needs adaptations and understanding to participate in the Christmas concert as fully as his classmates.  For our kids, Christmas concerts can mean:

  • Change in routine with increased rehearsals at school
  • Pressure from teachers who are anxious about their classes performing well
  • Pressure from us parents who are praying for a compliant child and worried about what others might think (if I’m totally honest about it)
  • Wearing unfamiliar clothing (this year, he had to have a button-up white shirt – which was itchy and also ‘showed his pecs’ which he didn’t like), along with new black dress shoes
  • For our large school, the concert is held at an unfamiliar local concert venue, not in the school gym
  • Going out in the evening and staying up past regular bedtimes
  • Waiting for a long time backstage
  • Walking on-stage with hundreds of people staring at you, and under bright lights and with unfamiliar noises
  • Stress from trying to remember all the words, notes on an instrument or dance routines
  • Having to stand still for long periods of time

It is super important for educators to recognize how hard the Christmas concert time is for kids.

Here are some tips from Aaron’s awesome teachers that have made the past few years of Christmas concert a success for Aaron.

  • Rehearsals to show our kids the venue, or at least share pictures with them.
  • Talking to them to remind them what to expect when they are at the concert.
  • This year, they had the younger grades go first, and then the older grades watched from the balcony (instead of making the older kids stand around backstage, bored stiff).
  • In Grade 4, Aaron struggled with playing the recorder. His little fingers couldn’t reach all the holes, and didn’t have the strength to cover the holes in the instrument. Plus, both blowing and moving his fingers was hard for him. And he quickly got bored, and found it amusing to see what happened when he used the recorder to bop people over the head with it. Oh dear.
  • SO the teachers figured out that he needed another instrument. He chose to play the triangle instead – it was more accessible and a less dangerous instrument for him. Modify and adapt!
  • Last year, Aaron volunteered to do the dance routine, which was pretty complex. Nobody said to him: ‘no you can’t do that.’ Instead, the choreographer they brought in went up on stage and danced right beside Aaron. They danced together so he could follow her dance moves, and so he could fully participate. Sure, he stood on the very edge of the stage, so he wasn’t right in the middle of the dancers, but that was fine. I still tear up thinking about this young lady doing what she had to do so my boy could fully participate in the concert. That, my friends, was an excellent example of a champion supporting inclusion.
  • In Grade 6, they start Band, where the kids have to pick an instrument. This year, his music teacher helped Aaron pick percussion, instead of a brass or horn instrument. Banging on the drums is something he can do.
  • The music teacher modified his drums this way for the concert. I’m ok with this, since I know that hitting a loud instrument at the wrong time would drown out the other students – he got a drum pad and drum sticks to play. The drum pad wasn’t plugged into anything, so didn’t make a lot of noise. I’m assuming Aaron didn’t notice this. He just knew he had an instrument and that he was playing with the rest of his classmates.
  • They also gave him the sheets of music, like everybody else. He dutifully changed the music sheets in between each song, even though he wasn’t really reading the music.
  • I especially loved this last night: although he sat on the edge of the row with the band, (I know his Educational Assistant was in the wings, ready to redirect him if he needed help), he sat with the rest of his class on a chair, but his legs are too short to touch the floor. Having his legs dangle is very distracting to him, and so a grade 8 student built him a little wooden stool so he could put his feet up on it. I think this is an awesome example of community: kids helping other kids out in their school.

He very seriously played along with all the songs, and was very pleased with himself afterwards. He had his stool, and his adapted instrument: voila, success!

And what we, as parents, can do to help:

  • Talk to the music and classroom teachers about what success looks like for your child.
  • Have your kids participate in shopping for the concert clothing, and then practice wearing the new clothing.   Aaron complained his button up shirt was ‘itchy’ so I had a spare white shirt in his bag, just in case he insisted on taking off his shirt. (This kid does not like to be itchy).
  • Keep the time before the concert low stress. Have a leisurely dinner, leave early so you aren’t running late. Drop your kid off at the door, if possible, and then find parking.
  • Be low key when you drop them off – I simply say, ‘be awesome!’ and give him a high five. Don’t hover, and let him hang out with his classmates.
  • Minimize our own anxiety about our kid’s performance. To be truthful, nobody is looking at your kid. They are only watching their own child on stage.
  • And so what if your kid lies down on stage, or doesn’t follow the dance moves? I guarantee there are other kids doing the same thing (you just don’t notice them).
  • Take pictures or video so you can show him afterwards. Use photos/video to prep for the Christmas concert next year, to remind him what it is all about.
  • Afterwards, emphasize your child’s strengths and what they did well. Was he able to be on stage during his part of the concert? Emphasize that, not the fact he was sitting on the bleachers instead of standing. This is a time for celebration, not for perfection.

Planning for success is all about perspective: it is a kids’ Christmas concert, not a Broadway show.  I need to take my own advice:  most of all, relax and enjoy: your kid is awesome just the way they are.

the invisible child

Last summer, I wrote about social exclusion from a mom’s point of view in a piece called The Invisible Mom.  It was originally published on the Bloom blog and then picked up by Huffington Post and Seleni Institute.  It still gets retweeted on occasion.  I know that the topic really hit a nerve.

Liz Lewis, an anthropologist, writer and sister of a woman with a disability, published In the Community, but Alone on the Bloom blog today.  I’m still in my pajamas and nursing a cold cup of coffee, but her essay made me outraged.  Not because I disagreed with her sentiment, in fact the opposite:  I was outraged at a society who continues to happily exclude people with disabilities in their world.  Our loved ones are ‘allowed’ to go to community schools, or live in the community, but are they actually embraced by the community as one of their own?  In Liz’s sister’s and my son’s experience, the answer is no, no, no.

What the Invisible Mom was about was about having an Invisible Child.  True, my son’s disability is also manifested in a physical way – you can look at him and know he is different.  So he gets stared at a lot (which I’ve learned to tune out over the years), but is he welcomed and included in the community?  No, he’s not.  My husband tells me that it is tribal:  that people fear people who are different.  But it is 2014!  We have committed to inclusive education so that he IS included – and that to me doesn’t just mean the school tolerates having him sit in the classroom.  Inclusion includes social inclusion, but here’s the stark reality:  while the teachers do their best to ensure he’s included in all activities, including recess and gym class, the sad fact is that the other children do not include him socially, in a meaningful way.  Number of birthday party or playdate invitations from school?  Zero.  As an assistant principal said to me:  we cannot force kids to be friends with your son.

I think we need to turn this issue upside down.  I’m tired of being told to be the super fun mom so kids want to come over to our place and be friends with Aaron. (Um, which hasn’t worked lately anyhow). I’m tired of hissing at Aaron to ‘behave’ and ‘not to be weird’ when we are in public, for fear of the stares and judgement.

How about we stop using the word ‘society’ and start saying you.  

How about you, parents of typical children, work hard to teach your children not to be afraid of all of those with differences?  How about when you talk about diversity, you include children with disabilities in your formula?   Why is it up to us to always beg and plead for you to remember our child when you are crafting birthday invitations?  Why is this my responsibility and not yours?  Do we all not want to teach our own children to contribute to a kind, welcoming and diverse world?

Change is never going to happen unless we start talking about these issues honestly.  Thank you, Liz Lewis, for introducing the important topic of social exclusion in a reasoned and rationale way.  I hope that it hits the mainstream, because that’s where these hard conversations need to happen….

EDITED TO ADD:
My husband constructively suggested that this post was mostly venting and contained no practical advice.  What’s the solution to the issue of social exclusion?  I’ve thought about that, too!

Here are some tips and hints about talking to kids in the classroom about a child with Down syndrome (or any other difference):  The Down Syndrome Talk.  And for families teaching their children about diversity and differences?  How to Become Part of Aaron’s Village.  It starts as simply as smiling and saying hello.

what inclusion means to us

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Where’s the data, Sue?

When I speak in the health world, I complement my stories with research and data.  This helps in two ways:  it addresses the left-brain thinkers in the audience, and it expands my topic (which is usually patient-centred care) from a philosophy that is just ‘nice to do’ to a practice that is evidence-based.  I never forget that many health professionals are also scientists, and that they believe in data and research.

I found out last week that the same is true in the world of education.  I was thrilled to be asked to speak about What Inclusion Means to Us to an audience of parents, teachers and leadership at my son’s community school.  I think this was a great demonstration of partnering with parents.  Giving all parents a voice at the school is an important step to authentic collaboration.

I prepared stories about our experience with successful inclusion.  I also talked about challenges with inclusion, and how Aaron has encountered social exclusion.  The Assistant Principal wanted me to be honest about our experiences, and I was grateful for that support – it elevated my presentation beyond just cheerleading.

There were three parents with typical kids who attended the presentation.  I was thankful that they took the time to come to a session on inclusion on a Wednesday evening.  It was clear, however, that one of the moms there had concerns about having our kids with special needs in her children’s classrooms, and she expressed that she felt that our kids took away from teaching time for her children.

This is what I needed more than my inclusion is the right thing to do message.  Bringing up research that proved that typical children actually benefit from having children with differences in their classrooms would have really helped.  When I got home, I threw out a wide net to my contacts to gather inclusion research.  Here’s what I found:

  • Dr. Jacqui Specht makes a crucial moral point that underpins all discussions about including children with differences:  It is still a popular belief that students are more or less deserving of an education based on “ability,” yet if we substituted other forms of diversity (such as First Nations students, poor students, or girls), this attitude would be unimaginable. (from School Inclusion:  Are we getting it right? on the Canadian Education Association website).
  • Placement in inclusive classrooms does not interfere with the academic performance of students without disabilities with respect to the amount of allocated time and engaged instructional time, the rate of interruption to planned activities and students’ achievement on test scores and report card grades (York, Vandercook, MacDonald, Heise-Neff, and Caughey, 1992).
  • “As Roger Slee (2007), noted research in inclusive education observes, when we realize that persons with a disability can actually be a resource and not a threat to learning, we can begin to revise or transform our approach to inclusive education.”   -from Grace Howell, Canadian Research Centre on Inclusive Education, Western University.
  • Also from Grace:  “Peck, Donaldson, and Pezzoli (1990) found that ‘adolescents who had social experiences with peers with severe disabilities perceived that as a result of these interactions (a) their self-concept improved, (b) they grew in social cognition, (c) they were more tolerant of others, (d) fear of human differences was reduced, (e) they developed personal principles, and (f) they developed relaxed and accepting friendships.'”

I love stories.  Storytelling is my thing.  Last week I learned a valuable lesson:  next time I’m talking about Aaron’s experience in his community school, I will bring both stories and data with me.  Then I will have a more complete toolkit to answer any questions that come my way.

Note:  A special thank you to Jacqui Specht and Grace Howell from Western University’s Canadian Research Centre on Inclusive Education for generously sharing these references to research with me.

a place to belong

Aaron goes to a social communication group that meets at our neighbourhood recreation centre.  He started going to ‘Friends Group’ two years ago, and at first I was leery about the rec centre.  It is stuffed with parents watching their kids play hockey at the arenas and athletic looking people at the gym.  (This is not a ‘Sue’ hang-out.  I’m a nerd girl who is much more comfortable in a library or cafe).

For a year, I cringed when I walked past the arenas full of boys playing hockey.  Aaron would linger at the window and watch the game, until a hard shot bulleted a puck towards the glass, and he’d run off, alarmed by the noise.

Aaron has talked about playing ice hockey for years.  It pained me to walk past those rinks and those parents.  With their big hockey bags and easy manner, it seemed like they owned the place.  This felt like a place that we didn’t belong.

Thinking about my discomfort now, I don’t believe I was pining for a ‘normal’ child who played hockey. But it bothered me that hockey’s competitiveness and speed automatically excluded a boy like Aaron, who could barely skate and was befuddled by the speed of such an intensive game.  It bothered me that he felt left out.

So last winter, Mike carefully constructed an ice hockey rink in our small backyard.  He shovelled the snow, put down a tarp, pounded in some boards, and went out in the cold, night after night, with the hose connected to the washing machine and laid down the sheets of ice.  Finally it was ready.  He and Aaron donned their skates and played hockey night after night.  Sometimes Aaron threw off his skates and ran around on his boots.  He loved being goalie.  He scored a lot of goals on his dad.   Finally Aaron could play hockey.  This spring we’ve signed him up for special needs ball hockey.  He will get to play in a team (but without ice).  We are doing the best we can.

Walking past the arenas at the rec centre has become less and less painful.  The middle rooms in the centre are filled with kids in Friends Groups.  Many of the children have autism, some kids have CP, a couple have Down syndrome like Aaron, and a few others have rare syndromes.  There are peers, who are volunteers from the high school, and hang out with the kids and role model good social communication.  Examples of valuable lessons that Aaron has learned:  head up and say ‘hi’.  Don’t call people fat, even if they are. Skills that he needs to be a good friend (and to not get beat up in the playground).

Every semester, I watch the new peers get comfortable with the class.  Many of the high school kids who volunteer to work with our kids are high achievers, with an eye on a future medical school application.  It is heartening to watch their transformation.  The first few classes they appear anxious while trying to communicate with kids who have challenges communicating, kids who pace around the room, kids who hide under tables.  But slowly the ‘typical’ kids relax, and start actually having fun.

Right now, the group is having a scavenger hunt.  They are wandering about the rec centre, looking for items on their list.   Many of the parents are in the coffee shop, chatting.  I can overhear them talking about transitions, or school consultants, or funding – all the classic topics for a crowd like ours.  Other husbands, like mine, have disappeared to the gym.  The kids are having a party tonight, so we’ve brought a game and snacks.  Aaron insisted on bringing his Battleship game and cheese and pepperoni sticks, so I dutifully stopped at the grocery store and stocked up (he told me to bring lots).

This recreation centre has become Aaron’s neighbourhood hang out.  He’s comfortable here, knows his way around, and smiles broadly as he greets his friends.  I have finally realized that he deserves to be here as much as the hockey kids.  Despite my past reservation, I’m grateful that this group moved out of its home in a church basement and rocketed, highly visible, into the midst of our community.  For we all belong here together – the hockey kids, the kids with autism, the jocks, and, yes, even the nerd moms too.