an ode to aaron’s ‘helpers’

Aaron had a spectacularly awful day at school yesterday.  In today’s communication book, his lovely Educational Assistant wrote:

ps

That has to be the most awesome, understanding note back from a school ever.  My eyes filled with tears when I read this.

I just want to pause to acknowledge the amazing women who have been what we call ‘Aaron’s Helpers’ over the past six years – Naomi, Anne and Debbie.  (And before Grade 1, Lisa and Jess).   These folks have used their skill, patience and creativity to work with our son for five hours a day, ten months a year.  Aaron is pretty good at testing skill, patience and creativity, but they have stepped up to be kind, compassionate and understanding with our boy.  If Aaron had a rotten day, Anne, his EA from his school in Edmonton, would always say:

tomorrow

I believe Educational Assistants are educators, too – in fact, they are responsible for delivering curriculum to our kids in a way they will understand.  They get to know our kids really really well – for better and for worse.  I know they don’t get paid much, and sometimes see us parents frustrated and angry.  I hope they know how much they mean to us, and that we remember to say thank you to them along the way.

 

settling in

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Our little family of three moved to the Vancouver area from Edmonton on March 1.  Many kind folks have asked:  how has Aaron’s transition been?

One month later, I have time to catch my breath and reflect.  One of the many thoughts that washed fear over my body when I thought about moving was the notion that we were pulling Aaron from the middle of his grade 6 school year to move across provinces to an unknown school.  Although we vetted the school district and the schools carefully, we did not know how he would respond to this great transition.  Plus, he was having a good year in his old school – most stories about switching schools in the disability world come from yanking kids from awful school settings.  This is was not the case.

We arrived a week before our school district’s two week Spring Break.  I am thankful to have a family-friendly work place, and I did not begin work until mid-month.  So Aaron ended up having a month long break before his first day of school.  This slow and steady transition was purposeful.  We wanted him to get used to Vancouver and our neighbourhood before his first day of school.

We simply hung out.  We walked along the beach.  We ate sushi and fish and chips.  He met the kids living in our cul-de-sac.  We admired the view from Burnaby Mountain.  We fed the ducks at Burnaby Lake.  We went for walks to the grocery store and I put him in charge of mailing letters.  We visited the library to apply for a library card.  We ventured to the big mall.  We played chess at the Burnaby Village Museum.  We picked Gramma and Pappa up from the ferry.  We walked along the boardwalk at White Rock.  We took cousin Olive to the Farmer’s Market.  We had newly-near aunties and uncles over for dinner.  We drove up to Whistler to eat Aussie pies.

When Aaron began school on March 23, he was happy and relaxed.  I think he also was sick of being with us and was ready to interact with kids his age.  He’s on his second week now.  The great thing about not having a special ed/program option in this province?  The school is like, ‘meh, of course he’s welcome here.  We have all sort of kids in our school.  We will make it work.’

I love this can-do attitude.

In the end, Aaron was fine with the whole transition thing.  Terrified about switching your kid’s school for whatever reason?  True, it is risky and the devil you know might be a safe bet.  But what if the new school is BETTER?  What if the geographical fix ACTUALLY WORKS?

I spent a bucketload of time worrying about Aaron’s school transition.  I could have spent all that energy thinking about more useful things, like what brand of raincoat should I buy?  What’s the best route to drive to my new work?  Where is the best sushi?  What are all those different birds coming to our bird feeder?  And, most importantly, how do I get the fallen cherry blossoms off my car?

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i just want a hug

what kids need

what kids need

One of the many things I am going to miss from Edmonton is the Family Inclusion Group that was started by five moms at my son’s school.  Four of us have kids who have Educational Assistants, and one other mom has typically developing kids, but is interested in inclusion, and creating kind and caring school environments for all children.

That mom’s name is Amy Elliott, and she happens to be a Speech Language Pathologist.  Last night, our group co-hosted a presentation from Amy and Registered Psychologist Pamela Barrett called Beyond Temper Tantrums:  Uncovering Behaviour.  

Behaviour is a hot topic in our world.  This talk gave concrete strategies for both parents and teachers when working with children of all kinds.  Over 30 folks showed up, including our school trustee and administration.  (Our organizing group was very pleased.  We have been searching for a topic that wasn’t just a ‘special needs’ topic – one that would appeal to a greater audience).

Amy and Pam gave a professional, practical and passionate presentation.  I’ve been a mom for almost 22 years, and I’m still learning every single day about how to be a better parent. Here are some of my own take-aways.

  • There is always a reason behind behaviour for all children under 12.
  • It is our job as parents and teachers to be curious about what those underlying behaviours are.
  • Punishment is only a bandaid solution.  Unless we find the root cause of the behaviour, it is going to continue on.

They said that all children need to: feel a sense of belonging,  be loved, have a purpose and  feel important.  (At this point in the presentation, my eyes are welling up.  I was thinking YES!  And all that must NOT be conditional on a child exhibiting ‘good’ behaviour).

Some great points for educators:

  • You can’t teach the mind until you have the heart – Dr. Gordon Neufeld
  • Kids won’t respond to people they aren’t attached to
  • Encouragement is more effective than punishment

A memorable quote for me was:  A misbehaving child is a discouraged child.  I’d also add to that – a misbehaving child is also a misunderstood child.  My youngest son has flourished in environments where people have taken the time to listen to him, and uncover the reasons behind his behaviour.  I truly believe that all his behaviour is communication – and he is always trying to tell us something.  It is up to us to figure out what that is, and give him the tools so he can communicate it more effectively himself.  This can be done through social stories, visual cues, helping him identify emotions, and simple reminders to breathe.

Amy and Pam stressed that having empathy for the child and what they are going through is absolutely essential.  For like the porcupine in the picture above, the more kids push us away, the more we need to demonstrate our love and understanding.

Their message of love and belonging is a powerful one.  I hope it gets spread throughout the schools with Edmonton Public School Board.  As Amy and Pam said:

The need to belong, to be securely attached, to feel important and worthwhile and to be loved is hard wired into the human body.

When we see behaviour that does not contribute to the fulfilment of these needs in healthy ways, let’s be curious about what’s going on and wonder how we can help the individual get back on track.

Our kids are worth it, don’t you think?

Edited to add:  These fabulous resources were also shared:

 

see you know you like you trust you

1_times_square_night_2013Aaron is in grade six in a massive school.  There’s currently just under 900 students, and the school lobby at pick up time is like Times Square on a Saturday night – total and complete chaos.

In a school of that size, there are of course other kids who have funding for support.  But Aaron is one of the only kids with a visible difference, so meeting the other parents of kids with Educational Assistants is impossible.  I mean, you don’t just go up to a parent and say, ‘hey, does your kid have autism or something?’

I believe in the power of peer support.  I think there is great benefit to connect families together.  We can support each other, share information and teach each other how to be effective advocates.  Peer support also has a significant mental health benefit, as we know we aren’t alone.  I’ve been successful starting up peer support initiatives in the health and disability worlds, but I struggle with finding my peeps in the school environment.

Last year I was very fortunate when an Assistant Principal started to informally introduce me to other parents in the hall, and supported the creation of an Inclusion Group that meets regularly both formally at the school, and informally for coffee at our recreation centre.

We purposely kept the group open to all families who are interested in creating a culture of acceptance and compassion at our school.  We want our Inclusive Group to be inclusive.  So this doesn’t just include families with kids with so-called ‘special needs’ but people who have typically developing kids, and who want their kids to be in a school environment that welcomes and embraces all sorts of diversity.    I think these parents who show up to our meetings are pretty special.

On Friday when we met for coffee, we talked about how to become more active in the greater school community.  The last thing we want is to be a segregated ‘special interest’ group.  We want our kids to belong to the greater student community, so we have to step up and be more visible.  Being an introvert and mom of much older children, I’ve never felt like I’ve fit into the gaggle of moms at the elementary school.  I’m always the awkward, bookish girl, and don’t even have the tools to know where to begin.

Amy, one of the moms, had great wisdom about the steps required for both us adults and our kids to gain acceptance, and have influence in the school.  I love the simplicity of this:

People have to:
First see you.
Then get to know you.
Then hopefully they like you.
Then they learn to trust you.  

This is so brilliant.  Showing up is the first step, and we are committed to showing up at Parent Council and for other volunteer opportunities at the school.   Acceptance takes a lot of time, hard work and perseverance.  I’m not going to lie – this is not easy stuff.  But we are committed to not giving up, even when the going gets hard.  Because when you have each other, you’ve got each other to hang onto even when the road is bumpy along the way.

The Down Syndrome Talk

 

Aaron in Grade 1.

Aaron in Grade 1.

When Aaron was in grade one, he was having troubles with some of his classmates.  The teacher witnessed a group of the other boys egging Aaron on.  They’d encourage him to do silly things or make weird sounds, and then laugh and laugh.  My son happily participated, thinking that the boys were laughing with him.  The sad fact was that they were laughing at him, not with him.

This was the beginning of his social exclusion.

Luckily, Aaron had a great teacher in grade one.  She was seasoned but open to learning more about Down syndrome and most importantly, she believed in Aaron.  She’d seen this Lord of the Flies behaviour before, and suggested that we have the Down syndrome talk with the students, hoping that encouraging understanding of Aaron would foster compassion.

I worked with the school board’s behaviour consultant to come up with a plan for THE TALK.  I had a book that was perfect:  It’s OK to be different by Todd Parr.  This is a super book.  It isn’t specific to Down syndrome, but it talks about all the ways children are the same and different.  I’d recommend it for any classroom that is thinking about having a discussion with their students about any differences.

The day came for THE TALK. I stood at the back of the classroom, sweating and fraught with anxiety.  I spoke to Aaron about Down syndrome earlier in the day.  He was only six, and I wasn’t sure how much he understood.  I told him that he needed a helper in class because he had Down syndrome, and that he was born that way.

The consultant read Todd Parr’s book.  Then she asked the kids how they were different.  Now, this happened to be a very multicultural class, so many kids proudly answered:  I was born in Africa!  I was born in India!  When it came to Aaron’s turn, he said:  I love hockey!  Then the consultant gently said:  another way that Aaron is different is that he has Down syndrome.  She asked the class, ‘what do you know about Down syndrome?’

The first answer came from a boy (who I will call kid #1) who had history of treating Aaron with disrespect.  He said, with great distain:

Down syndrome means you cannot control yourself and that you make weird noises.

I almost passed out in the back of the room.   My worst nightmare had came true.  I had witnessed this boy mock other kids who played with Aaron, asking them:  why do you want to play with him, anyhow?  Of course he had something negative to say about Down syndrome.

But then, something wonderful happened.  Another boy, kid #2, put up his hand.

Having Down syndrome means that you learn differently, and you just need some extra help and patience.

Tears of gratitude sprang to my eyes.  This young boy had hosted Aaron at his house for playdates.  He knew Aaron as a boy, not as just a diagnosis, or someone different to be afraid of.  The consultant jumped on his comment, and finished the discussion in a positive way by explaining that Down syndrome was something you were born with, that it wasn’t contagious, and yes, that people with Down syndrome need extra time and help to learn.  And that was that.

We survived THE TALK.  Aaron didn’t seem worse for wear.  But the kid #1’s comments upset me for a long time.  We pulled Aaron from that school two years later, in part because of a lack of support from the families in the community.  Kid #2’s family ended up moving away, and that was a big loss for Aaron.

I realized a few things from the experience of THE TALK:

  1. Better to explain differences than to just leave them unsaid.  That way you can address myths or misunderstandings head-on, and not let them fester in negative behaviours.
  2. Use a book like It’s OK to be different for the younger grades.  That way you can gently introduce the fact that ALL kids are different, not just kids with disabilities.
  3. With a group of young children, I wouldn’t just throw out an open question about disability and hope for the best.  I think guiding the conversation is less risky – explaining Down syndrome in simple terms, and then asking if kids had questions might be a better tact.
  4. I believe in involving Aaron in THE TALK, but that’s a personal family decision.  Some people don’t tell their kids about their disability, out of concern that they don’t want them to feel different.  Having a kid with a visible disability forces that conversation a bit – we’ve always chosen to be open with him about his difference.  One day, in a discussion about differences, I hope that he can pipe up:  I have Down syndrome as proudly as a kid might say:  I was born in India.  That’s part of who he is, and I want him to embrace his identity.

My most important lesson came from kid #2.   I realized that kids learn their attitudes from their parents.  Kid #2’s mom was an Occupational Therapist and his dad was a physician.  But more importantly, his mom had an uncle who had Down syndrome, so disability was just a part of their family lives.  They had obviously spoken to him about patience and compassion for people who had differences.  I talked to his mom later about her son’s response at THE TALK and thanked her for raising such a kind boy.  Empathy was taught and encouraged in that family.

Kid #1’s comments still haunt me four years later.  Although we moved neighbourhoods and schools, we still run into this family.  Both parents won’t make eye contact with Aaron.  Ironically, the mom is a physician, too, and the father is in a high profile position at the university.  Achievement and status is what’s important to them, not compassion.  I’ve spent many hours of wasted energy thinking about them, and after writing this post, I’ve finally decided to let it go.

Let’s channel our energy into people who believe in our children.  The others simply aren’t worth our time.  Thank you to all families like kid #2’s family who teach their children how to be compassionate and accepting of people with differences.  Those are the kind of people who are going to make a positive impact on this world.

thanking teachers

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Today is Aaron’s last day of Grade 5.  Every school year is a bumpy year for him, and my emotional pendulum from September to June swings from feeling totally despondent to feeling incredibly grateful for Aaron’s school experience.  I’m on the incredibly grateful side of the spectrum today.

Last week, we had the ‘transition to Grade 6’ meeting with his Grade 5 teachers and the administration.  As is my way, I wept at that school meeting, but this time I didn’t cry out of frustration and anger.  I teared up out of deep gratitude for the teachers and the Assistant Principal for the effort they poured into teaching Aaron this year.

They never gave up on him, even during his darkest days in December, when a cold snap resulted in no outdoor recess, he had to share his Educational Assistant with a new student, he had increased academic pressure and way too many Christmas concert rehearsals.  These factors, along with excitement over Santa’s impending arrival, threw him totally off-balance (and was reflected in his behaviour).   I knew the teachers were feeling frustrated, but after a meeting to talk proactive strategies for success, things brightened in the new year.

Are things perfect at school for Aaron?  No.  Most of the imperfections come from troubles in the system:  large class sizes, lack of time for teachers to adapt curriculum, better education about how disability can affect learning and behaviour.  Is school ever easy for Aaron?  No, but he’s learning how to be a good student.  Sitting in a desk and ‘behaving’ does not come naturally to him.  But he will give it his best effort if he senses that he has teachers who set high expectations for him.    And this year he did.

I took the time to write long letters to each of his teachers, his Educational Assistant, and his Assistant Principal this year.  I believe in the Thank You Project for educational professionals too.  After all, their impact on Aaron is profound – they spend six hours a day with him, ten months out of the year.  I really wanted to express my gratitude to them, in a more substantial way than a ‘thank you’ and gift card.

For his Educational Assistant:

You teach him, you care for him, you give him confidence, you make him laugh, and you help him be as successful as he can in school. You always have a beautiful smile, even if I know you must have had a frustrating day – I never see it show – you have such grace in that way.

For his teachers:

I so appreciate your efforts to assess his ability, and to modify the curriculum for him – particularly in math, which has classically been a trouble spot for him. I have never seen him express his own enthusiasm for math before!

You are one of those exceptional people who see the good in others, and make people feel like they are all special. That is a very powerful gift, particularly for young students, whose sense of identity is just being formed.

Thank you Anne, Robyn, Terry, Scott and Terry for being a part of Aaron’s team.  Thank you for never writing him off or giving up on him.  Thank you for believing in my boy, nurturing his spirit and keeping his love of learning alive.

hopeful school

Ella walking across the stage at Scona's commencement ceremony.

Ella walking across the stage at Scona’s commencement ceremony.

There were 482 students at my daughter Ella’s commencement ceremony two weeks ago. Each one of them walked across the stage, accepted their certificate and shook hands with the principal. There was polite clapping for each of the graduates, until a young man appeared on the stage. Then, students in the audience went wild – yelling, hooting and applauding thunderously.

I leaned over to my daughter’s boyfriend and asked: “Who is that boy?” “That’s Ryan,” he said. “He has autism.”

I’ve asked Ella where the kids who have special needs are at her school. She said there’s a special class, but that some kids took classes along with the typical students. Ryan was one of the kids who was included in the regular classroom.

I wept at the audience’s response to Ryan. The power of that graduating class was clearly behind him. I thought about all the people who had helped Ryan achieve his diploma along the way: his family, teachers, leadership, community, friends, and, of course, Ryan himself, with his own will and determination.

The next night was the graduation banquet. It was a combination of speeches and entertainment. We were surrounded by twinkly lights, beautiful girls in their sparkly gowns and their handsome suitors. It was a sight to behold.

Halfway through the program, Ryan got up to speak. He had his speech written out, and carefully read it to the crowd of close to 2,000 people. I marvelled at his bravery in presenting to such a huge audience. He talked about his time in high school, swimming at a local pool, and taking our LRT subway system (obviously a passion of his, as evidenced by this article here).

Then Ryan’s dad Rob got up to talk. Ryan remained on the stage, catching glimpses at the massive audience.

Rob thanked the high school and the students for believing in his son. He shared a story about how scared he and his wife were when Ryan came from junior high, thinking their boy would have no friends in the large high school. He talked about inviting kids to their house, and being terrified that nobody would show up. But two boys did show up, and they became Ryan’s friends. The crowd erupted into a chant of “LRT, LRT” for Ryan. I dissolved into heaving sobs. I had my face pressed into my husband’s back, and I could feel him crying too. To top off the evening, our mayor got up and promised to invite Ryan as his special guest to the opening of the new LRT station later this year. By then, I was messily wadding up tissues and had cried off all my make-up.

What do we want for our children? We want them to have friends. We want them to be loved. We want them to belong. Ryan found that at Strathcona High School. My boy Aaron is just in Grade 5, and struggles mightily in school. Ryan and his dad gave me hope for Aaron’s future, and for that I am very grateful.

Life for Aaron at school is not easy. There are many trips to the principal’s office. He struggles to keep up. He is often left behind. I get emotional in school meetings. And I’ve heard that middle school is even harder. But we all have to be strong and stick it out.

When Aaron graduates in seven years, we will have a huge party to celebrate. We will invite all the people who supported him through school: his old Assistant Principal, his current Assistant Principal, his teachers, his Educational Assistants, the staff from the school office, and hopefully the friends he’s made along the way. We will invite every single person who believed in him, and knew that he could learn and succeed. We will celebrate Aaron for his perseverance, for he has to try so much harder at things that come easily to you and me.

Book your calendars for May 2021. It promises to be the party of the century.