cut the red tape

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My son is 15 years old and loves to participate in sports.  We’ve learned the hard way that most sports teams don’t want him because he has Down syndrome.

Alas, true inclusion in recreation or sports has rarely happened in real life particularly as Aaron has gotten older.  One exception has been his high school, where he has heartily been welcomed in Physical Education classes and his teacher has embraced the modifications that he requires because of his bum knee, intellectual disability and short stature.  Hurrah for the inclusion champions at his school.

Outside of gym class, Aaron been pushed into segregated sports activities.  I’ve come to peace with this, despite my philosophical insistence on inclusion.  Inclusion to me means belonging in the bigger community.  Being ‘allowed’ to play sports with other kids who are segregated is not inclusion.  But it is what it is and it allows my kid to be active with a diverse group of people and so that’s a positive thing.

In the community, I’m not going to waste my precious advocacy energy fighting to have a team include Aaron if they don’t want him.  So he’s slowly been moved over to segregated sports and recreation programs like those at Challenger Baseball, Down Syndrome Research Foundation and Special Olympics.

Surprisingly, here in the segregated world, accessibility comes into play too.  There is a spectrum of ease of participation.  Challenger Baseball says – your kid wants to play baseball?  Come on in!  We don’t care where you live or what’s going on with you!  Just show up!   Down Syndrome Research Foundation says welcome to our Bollywood and Taekwondo classes!  Sign up if you can afford it (if not, you can ask for a bursary)!  You don’t even have to have Down syndrome!  These are good models and make it easy for kids to be active and have fun.

Now I pause at Special Olympics.  I know Special Olympics is a beloved institution so I’m going to get my hand slapped for this.  But I am going to say it anyway.

Special Olympics has grown into a massive organization. Along with growth comes bureaucracy. Accessibility for people with disabilities here is marred by red tape. Your athlete has Down syndrome?  He must get a controversial neck x-ray before he can register.  You live out of region and your local program is full?  You aren’t welcome on another team, unless you get approval from your home region to transfer over.  And then the transferring region has to approve you too. That requires having many forms filled out and then waiting and waiting, as my son has been doing for the past month.  He can’t attend practice until all the paperwork is done and the season has already begun.

Who loses in the red tape environments?  It is the kids themselves.

I will surmise when an organization gets too big, it drifts away from its grassroots beginnings and loses sight of the people they are supposed to serve.  It becomes about bureaucracy, policy, risk-management, staff/volunteers and rules, not the people themselves.  I’ve seen this happen over and over again with support groups and health/human services organizations too.  This is a darn shame.

This is particularly frustrating because I keep reading articles about how children with disabilities struggle with being physically active.  If we know this is true, why aren’t we making it easier, not harder for kids to participate?

I know that people working and volunteering for these organizations are well-intentioned.  I would ask them to pause and consider:  are your policies and rules causing additional barriers for people to participate?

If they are, I’d respectfully suggest it is time to untangle and take a good hard look at all your red tape. Who is this red tape serving anyhow?   Has red tape become a barrier for people to participate?  And is that okay by you?

Instead, let’s do what we can to let kids be active and have fun and never forget that sports and recreation is not about us adults.  Make it easier, not harder, for our kids to participate.  Help them find ways to be as healthy as they can be – and in the process, to find belonging and friendships too.

 

the day i sobbed at the bakery

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I stopped by Gabi & Jules bakery yesterday to pick up an almond croissant and a maple pecan pie. By the end of my transaction, I was sobbing at the front counter, barely able to eke out any words, my face hot and embarrassed by my unexpected show of emotion.

Before the crying, I was perfectly composed and waiting in line to order my baked goods. There was a young man in front of me. I could tell he wanted to chat, so I turned and faced him and smiled. ‘All the food here is good!’ he said. ‘Have you tried everything?’ I asked. ‘YES!,’ he said, bursting to tell me.  ‘I work here! In the back.’

Now I could feel the tears beginning to well up. I swallowed them back as we chatted a bit more.   This young man had some sort of disability – autism maybe – but that doesn’t really matter. He was obviously very proud that he worked in the bakery.

Being employed is so much more than just a pay-cheque – it can offer a sense of value, worth and belonging.   This particular bakery in Port Moody is well known for its inclusive hiring practices. (Here’s a video and article explaining their philosophy).

After the young man left, I mentioned to the nice woman working behind the counter (Sarah, the manager) that my husband recently heard owner Lisa Beecroft speak at a panel for inclusive employment. I kept it together until this point, until I confessed, ‘Our son is 14 and he has Down syndrome. I hope one day an employer like you will give him a chance.’ Then my voice caught and the tears started to seep out. I managed to finish up before fleeing to my car, but not before Sarah said: ‘Bring your son in one day so he can look around!’ This made me cry even more. I’m sure she thought I was odd (and admittedly I am, especially since the dumb cancer, which seems to have broken me open emotionally).

When Aaron was born, I was clouded in many fears for his life: that he wouldn’t find love or belonging or friends or meaningful work. To be truthful, we are still working on helping him with his search for many of these things. I feel hope in my heart for the future with companies like Gabi & Jules taking a chance on all different kinds of people.

I started going to Gabi & Jules because I heard they hired people with disabilities and I wanted to support them. But now I’m a regular there because the baking is just so damn good. (The hazelnut tarts! The granola! And oh the pies). And now that I’ve met one of the bakers in the back, I have a strong sense, as their logo says, the maple pecan pie we ate last night was made with love.

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*Coming up next week! A special guest blog post from my husband, Mike Waddingham, talking about inclusive employment practices.

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.