celebrating moms

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The beautiful women at my table.

Last Sunday, I attended a tea for moms who have children with Down syndrome. It was cleverly called Tea21moms. It was a lovely affair: held at a Fairmont Hotel with a high tea service of dainty sandwiches, pastries and of course tea. The service was gracious, the room was beautiful and there were generous door prizes and warm hosting by Tamara Taggart (herself a mom of a son with Down syndrome).

It was fun to get dressed up. I knew a few moms who have older kids, like me, and we sat together at a table. It was wonderful to catch up with them.

At the back of my mind, I felt a wee bit guilty at not having helped to organize the tea. It was the brainchild of Danielle and Tamara L, both moms of younger kids. Life is less hectic now that Aaron is 16 and his health is stable (knock wood) – why didn’t I think of hosting an event? Why didn’t I at least volunteer?

I expressed that I wanted to help, and Danielle gently said to me – we just want you to come and enjoy yourself. In the end, I managed to convince her to allow me to donate a door prize from our company. It was this gorgeous Mama Bear pendant from local Vancouver company Pyrrha Jewelry.

The poem that goes along with the pendant said this:
This talisman features a bear, a symbol of motherhood and childbearing. It represents ferocity in the protection of one’s family.

Every single mom in that room was a ferocious protector of their family.  To be truthful, it is really tiring to be a ferocious protector of one’s family.  Even real mama bears need to hibernate. As I wrote about a few days ago, we all need a rest from being brave and strong. This tea was a little rest for me.

In my last post I also talked about how hard I find it to let people take care of me. I looked around at the Tea21 room at the glowing faces of all the moms there. They were relaxed, not having to chase around kids or worry about anybody except for themselves two whole hours on a Sunday afternoon. I settled back and let myself be served and celebrated. This in itself was glorious.

We all deserve to be taken care of. We are all worthy of being pampered. Having a kid with a disability adds an extra layer of complexity to our lives as mothers. There are health concerns, therapies, IEPs, struggles with schools, friendships and belonging for both our children and ourselves. It can be a lot.

The tea was a way to recognize us and to let us know we were valued. What a gift that afternoon was to me. Thank you Tamara and Danielle for your vision and hard work. Creating a space for moms to connect is brilliant. We all need each other, more than we even know. The ‘system’ might call this peer support, but I simply call this a gathering of friends who happen to be woven together by a precious third copy of the 21st chromosome.

(This type of celebration of moms does not have to be restricted to moms of kids with Down syndrome!  Please be in touch with me if you are interested in how to organize a tea for your own community and I will connect you up).

to feel alive

Aaron Waddingham

Photo by Ryan Walter Wagner at Goodside Photo

This is my fourth day on Granville Island in Vancouver killing time and staying close as Aaron attends a Teen Improv camp at the Improv Comedy Institute.  I’m tucked away in a courtyard nursing a coffee and watching the gaggles of tourists stroll by.

Aaron’s high school drama teacher suggested that improv skills would help his burgeoning acting career.  So here we are for two weeks on Granville Island.  I do the driving and Aaron does the work.

Earlier this year he had an audition for a part in a TV series for a character with Down syndrome (spoiler alert, he didn’t get the part).  I asked him how he felt after his audition with the casting director.

“I feel alive!” he said, his eyes big, his arms outstretched.  His dad and I know that it is our job to support our children so they can do the thing that makes them feel alive.  For my oldest son it is music.  For my daughter it is nursing.  For Aaron it is acting.

Through a series of circumstances and a touch of serendipity, Aaron has been signed by a talent agent.  Roles for disabled actors are scarce, but we have been assured that opportunities are growing.  Aaron now has to put in the work to hone his skills just like every other actor.  He already works one-on-one with an acting coach, is in high school drama classes and a local acting school has welcomed him with open arms into classes this fall.  This summer, he tackles improv.

On the TheatreSports website it says: The Vancouver TheatreSports League and the Improv Comedy Institute are actively looking to encourage diversity within the improv community. As improvisers, we tell stories and we want our stories to reflect the experiences of our greater community.  They’ve backed this assertion up with action.  Aaron has been welcomed into the teen program like the other kids, together with kindness and accommodation from the Outreach Coordinator.

I promised to hang around the theatre in close range just in case they need me.  Now I’m not sure what I’m needed for.  After the first class, the instructor emerged with a big smile and reported a good day.  Yesterday I glimpsed Aaron standing in front of the class, giving suggestions for topics for skits (chickens, I overheard him say).  He’s holding his own.

This morning there was a new development – he crossed the street by himself before he disappeared out of sight into the building.  (This is a big deal in our world).  His mother is slowly releasing her apron strings.  He lopes out after class with his headphones on and a grin on his face.  “I am independent, Mom,” he informs me.

To me, the creative community seems to demonstrate an authentic commitment to diversity and inclusion.  They have been more accepting of my son than the academic or sports worlds ever have.  Perhaps creative types grew up knowing what it felt like to be different, to be on the edges, to struggle with belonging.  I felt the sting of exclusion, never fitting in, being called an ‘artsy-fartsy’ in the yuppie and jock decade of the ’80’s.

It wasn’t until I transferred from Nursing into English in university and immersed myself in Shakespeare and art history classes that I finally found my people.  I was the quiet bookish girl with oversize glasses and frizzy hair.  It was other people in the arts who accepted me just as I was – all awkward, introverted and breathlessly passionate about words.  (I’m still that way).

And so this is my dream for Aaron too: that he’s accepted just the way he is.  He’s a funny guy, he loves to perform and yes he has Down syndrome.  Ask him and he will firmly tell you:  I am an actor.  I wish I had a fraction of his confidence.

He feels alive when he is performing.  At our core, isn’t that what we all want – to feel alive?

I’m grateful to Rachelle Goulter at Vancouver TheatreSports, his agent Lena Lees-Heidt, his acting coach Lane Edwards and LyreBird Academy of Dramatic Arts for all giving our boy a fighting chance.  I hope the next time I write about Aaron the actor he has landed a part.  But in the meantime, we are sitting back and enjoying the ride.

everybody has mental health

mental health

Earlier this week, I attended a session on Optimizing Mental Wellness in People with Down Syndrome at the Down Syndrome Resource Foundation.  The speaker was Susan Fawcett, their Director of Therapy, Behaviour and Family Support.

Susan’s presentation reminded me how my own mental health and my kid’s mental health are all wrapped up together.

It makes me a wee bit nervous to talk about mental health. First there’s the regular ole mental health stigma.  Then there’s the incredible pressure I feel to be the strong mom who advocates for system change all the time.  I even feel pushed into cheerleader mode, aka: Everything’s Fine!  Fine!  Fine!  My kid is the best kid with Down syndrome EVER!  

Of course, that’s all bullshit.

Here I will repeat my mantra:  Being a human being is stressful.  Having children is extra-stressful.  Having a kid with Down syndrome adds yet another layer of stress.  But 95% of my stress comes from systems (health, human services and education sectors) and the hostile, ignorant ableist world.  This is not my son’s fault.  I won’t talk about his mental health here because that’s his business, not mine.  I don’t want to trod on his dignity.  But I can talk about my own struggles.

If we are truthful, we all have mental health stuff, whether we have a disabled kid or not.  It just takes becoming vulnerable for our stuff to be exposed.  I soldiered through the strong mama bear persona for 13 years after my son was born.  It took getting cancer two years ago for my whole house of cards to come tumbling down.

How I wish I had been more preventative about my own mental health.  I should have regularly seen a mental health professional to at least deal with my own childhood stuff. But I didn’t – the crisis of cancer is what introduced me to the therapist’s office.  Now I think and talk about mental health a lot.

Susan’s presentation was timely for me.  She offered helpful strategies for mental wellness, both for our kids and ourselves.  Susan gave me kind permission to share her talk, so I’ve summarized her points. As she told me, she wants to give this mental health piece more airtime.

Mental Wellness Strategies for Children with Down Syndrome – Susan Fawcett

  1. Help your kids engage in activities to experience both pleasure and mastery.  Susan called this behavioural activation.
  2. Make sure your child has a peer group of children of similar intellectual ability, especially starting in late elementary school.
  3. Consider social skill training, like the Zones of Regulation.
  4. Always look for self-esteem boosters for your child, like chances to be more independent + have choice, opportunities to teach others and regularly talk about your child’s strengths and unique talents with them.
  5. Give your children regular praise.  Interesting, Susan has observed us parents don’t offer enough specific, enthusiastic praise to our children. I’ve been guilty of that – falling into ‘corrective’ mode with my own son, which is a way of being that is focused on the negative.  I’ll be more aware of this going forward.
  6. Cognitive behavioural therapy can help all of us – of course including people with intellectual disabilities too!
  7. Talk to your child early and often about having Down syndrome.  (Books like Paint the Octopus Red can help explain genetics and for older kids, shows like Born this Way are awesome for role-modelling and offering a glimpse into the future).

Mental Wellness Strategies for Families – Susan Fawcett

  1. Acknowledge having a child with an intellectual disability is stressful.
  2. Organize date nights with your partner.
  3. Finding a social support network is crucial.
  4. Begin a mindfulness practice to help with stress.
  5. Take advantage of informal or formal respite.

For families, I’ve written about the concept of self-care before.  Self-care is way more than bubble-baths.  Here are my essays:

My small comforts list
Moms and Mental Health
Beyond Bubble Baths
Leaning Out

Dr. Yona Lunsky also wrote a great piece about this topic for families called Save Some Love for Yourself.

As Susan importantly pointed out, kids with Down syndrome have high levels of empathy, meaning they are more in tune with our own moods and stress level.  If we don’t overtly care for our own mental health, it will affect our kids.  This alone is a good reason to at least start talking about mental wellness in safe spaces in our own community.

If you are hesitant to look at your own mental health, at least do it for your children.   After all, your head is screwed onto your body.  We are in such denial about the simple fact that human beings also have rich mental and emotional lives. You do not have to wait until you get cancer like I did to take care of your whole fine self.

The Down Syndrome Rocks Talk, part 2

I thought the best way to share my son’s talk to a high school class about having Down syndrome was to simply share his presentation.  This talk was designed and written by Aaron himself.  The only adaptation we did was to provide copies of the speaking notes to the students, in case they had challenges understanding his speech.

I asked Aaron if he was okay with me posting his slides and his speech on my blog. He said yes.  (People with intellectual disabilities are capable of giving consent.  The problem is that we rarely ask their permission, or we don’t ask it in a way that is understood).

Enough with the mom commentary!  Here it is, standing strongly on its own.

Slide1

 

Hello, I am the only cool kid in at this school who has Down syndrome.  This is what I want you to know about Down syndrome.

Slide2

There are many kinds of disabilities in the world. Down syndrome is but one of them. I was born in 2003. When my mom and dad made me, I had Down syndrome.

I have three copies of the 21st chromosome. I have 47 chromosomes all together. You guys have 46! I have more chromosomes than you!

Slide3

 

How am I different?
My face looks different
I have low muscle tone
I need some help at school to learn

 

Slide4

I am the same as you too. How I rock: I like dabbing/flossing, Fortnite, Nerf guns, luxury cars and sports.

I also am an actor. I am not in Hollywood yet but I am signed with a talent agent. My social media is: YouTube
Instagram: @aaron.waddingham

Slide5

What I want you to know is that respect is the key. Respect means I want to be treated the same as you. I just need a bit of extra help.

Slide6

 

 

I am a human being like you.

 

Aaron delivered the presentation in a lively way, throwing in some jokes, demonstrating how he could bend his thumb back because of his low muscle tone and dabbing and flossing too.  Amusingly, when he said I have more chromosomes than you, he added BOOM!  IN YOUR FACE!

The students were very quiet.  The only time I spoke up during his talk was to say:  Aaron is a funny guy!  It is okay to laugh.  The permission to laugh with Aaron (instead of at him) seemed to help them relax.

I facilitated a question + answer session and there were thoughtful questions about stigma, independence, health concerns and the differences in education systems between provinces.  I felt a bit desperate to show them that we have a rich and full life (because we do), so I ended up rambling too much.  There are always lessons for me after every talk.

At the end, I made a request.  I said if they saw kids from the Access Program (the school district’s ‘special ed’ program) in the hall, not to be afraid to go up and say hi or give a fist bump or high five.  At least acknowledging people’s presence is a start on the long road to belonging.

I felt extremely proud of Aaron’s moxie.  He stood up and spoke for himself.  I was reminded how much he has to overcome to be a part of this world.  I admire him so much.  His ending comment:  I am a human being just like you – offers up with great clarity, everything you need to know about Down syndrome.

Did the talk make a difference?  I am not sure we will ever know for sure.  But if one person in that class is even just a little less afraid of a disabled person, then Aaron’s job was well done.

The Down Syndrome Rocks Talk, part 1

Slide5

This week, my son Aaron and I were invited to give a talk about Down syndrome to a class at his high school. We’ve co-presented once before, three years ago when Aaron was 13.

At that talk, Aaron read a one-page speech to a group of medical students. It was interesting to watch the students’ reactions to him. At first, when he stood up at the front of the room, they looked mortified. I asked them how many of them had disabled people in their lives. Only one of the medical students, out of 20, raised their hands. The concept of a disabled person giving a speech to them – in fact educating them – seemed new to most of them.

Once Aaron started reading his talk, I could see the look of surprise on their faces. Yes, some people with Down syndrome can read – not everybody can read and that’s okay – but some people can.  Note: you don’t need to read to give a talk, just the same as you don’t have to verbally talk to communicate.  But Aaron reads, so he read from his notes.

By the end of the session, a few of the students approached Aaron on the way out to give him a high five, or to comment on his hockey t-shirt. They made real effort to connect with him and for me it was heartening. It was a positive session. I hope they remember Aaron when they embark on their medical careers, and even the memory of him confidently standing in front of the room reading will dispel a stereotype or two that they might have had about people with intellectual disabilities.

Last week, when the teacher asked if I could come speak to the class and maybe bring Aaron, I flipped the request upside down. I asked Aaron if he wanted to speak to the class and if he maybe wanted to bring me.  I explained what the talk would probably be like and who would be in the audience.

‘Sure!’ he said. We were on.

I’ve been considering lately how I do too much for Aaron, instead of with Aaron. Or even better, how I should be giving Aaron the space to take the lead himself. As his mother, I think I have taken away a lot of his agency by making decisions for him. It is high time for me to give him control in his life back.  He would agree.  He often tells me:  “Mom I want my freedom.”

So I’ve included my lessons that I learned in the process of working with him to prepare his slides and speaking notes for the talk.

Lesson 1: It was his decision to speak.

Lesson 2: It was his talk, not mine.

It is always a good idea to ask organizers what they wanted for key messages for the audience. So I asked the teacher what she thought the students would like to know. She said: to dispel some of the myths about potential and abilities about Down syndrome, and to inform about some of the potential physical challenges. 

Aaron and I sat down to plan for this talk. ‘Do you want to use slides?’ Yes he said. We opened up PowerPoint and I handed over my computer. He picked his own template. ‘Do you want to type or should I?’ You do it Mom, he said.

Lesson 3: He chose his own template.

Lesson 4: I told him the key messages, but I did not tell him what to put on the slides. I only was the transcriber.

Lesson 5: He chose all his own images.

In the end he had six slides. I guided him with the topics that matched the organizer’s key messages. (This is what I would do if I was doing coaching for any speaker, something I do in my consulting business). He had an introduction slide, then talked about genetics, how he was different and how he rocked. The second last slide is the one that’s pictured above.

“What do you want the students to know about Down syndrome?” I asked. Respect, that’s the key he kept saying so it got its own slide.

For his final slide he wanted a picture of a black hole. He looked around Google images and he chose a picture of a black hole that was embedded inside Earth.

Then he dictated his speaking notes that matched up with his slides. I prompted him only by asking: What do you want to say when this slide is on the screen?

Lesson 6: The words on the speaking notes were his. I merely typed out what he said onto his speaking notes. I repeated his words back to him. Sometimes I suggested fixing some grammar, but otherwise I merely served as a copy-editor. The writer in me bit my tongue. I did not write or ghost-write his talk.

When we got to the last slide with the black hole, I asked what he wanted to say.

“I am a human being the same as you,” he said.

“That’s your final message?” I asked. Yes, he said firmly and definitively.

He then practiced reading his speaking notes. I emailed them to the teacher and asked her to provide copies to the students. People sometimes have a hard time understanding Aaron’s speech, especially if they haven’t developed an ear for him. The notes served as a tool to make his talk more accessible to the students. We adapt and modify where we can.

Aaron presented his talk on Wednesday. I’m waiting on the student feedback from the teacher. When I get the evaluations, I’ll write another piece about how his talk went. That’s for another blog post.

In the meantime, I learned a lot about taking my sticky hands off the steering wheel (as Anne Lamott says) and ‘allowing’ Aaron to create his own damn talk about his own damn self. These are new lessons for me.  I’m sure I did still have a sticky finger or two on the steering wheel and I will vow to improve next time.

I’ve been so wrapped up in my own identity of being the mom of a kid with a disability that I’ve forgotten that I don’t have a disability. Aaron’s Down syndrome is his, not mine. I may be an old dog, but this kid is continually teaching me new tricks.

my take-aways

dance

Last man standing on the conference dance floor on Saturday night.

I haven’t been to a Down syndrome conference in many years. As a young mom, I was a conference keener. I attended World Down Syndrome Congresses, our national conference and scores of local events. I spoke, I volunteered, I organized. Then I got very tired. I became pre-occupied with advocating for Aaron in school and I disappeared from the conference circuit for the next ten years.

Just last year, I ventured out to a talk about housing. There were three moms on a panel. They spoke about how they pooled their time, talents and resources to come up with creative solutions to counter the struggle to find housing in the Lower Mainland. I learned from them that you can’t depend on the government for anything. I was also reminded that us families need each other.  I realized that I had to start showing up again.

So this weekend, Aaron and I went to the Canadian Down Syndrome Conference in Victoria. There I was moved to tears. I had a fabulous time catching up with other moms. And I felt terribly proud of my son.

My main intention for the conference was for Aaron to have fun in the Teen Program. (This was accomplished).  For my own experience, my dear friend Helga wisely said, If I learn even one thing to take away from the conference, I’ll be happy. I took her lead and distilled all my learnings from the sessions to one simple take-away:

Provide opportunities for people with Down syndrome to speak for themselves. And most of all, listen to them.

The sessions each offered a lesson to take away and apply to real life. Here’s my summary of what I learned from each break-out session.

Shelley Moore
The guru of inclusive learning is a crackerjack storyteller. From her I learned about the concept of congregation. She said conferences like this one for Down syndrome are about congregation not segregation. This means we choose to be together as a community because we want to – not because we are forced to. May we all seek and build our own congregations with groups of people where we are welcomed and feel a sense of belonging.

Dr. Dennis McGuire
The former Director of the Psychosocial Service for the Adult Down Syndrome Center in Chicago, Dr. McGuire renewed my admiration for my son and other people with Down syndrome. Dr. McGuire explained the positive aspects of behaviours like grooves and self-talk. His deep respect and love for people with Down syndrome came through. I appreciated his strength-based approach that helped me understand how resourceful Aaron actually is as he navigates his days in a sometimes-hostile world.

Mary Harber
Ah sexual health, everybody’s favourite awkward topic. From Mary I learned that sexual education is not only about sex. It Is about learning how to be a friend and a respectful partner.  It is essential for us to teach Aaron how to be a good man. She also showed the video the Guest Room, which offered the poignant message that everybody grows up.

Elaine Willcock
This session won the prize for my favourite unexpected break-out session. Elaine presented about starting a self-advocacy group for adults with Down syndrome. I loved this talk and was glad I picked it. The best part? Adults with Down syndrome with all speaking abilities presented their perspectives:

The group taught me that we are not alone. I have more confidence to speak and I am not afraid to share my ideas. -Self-Advocate

I learn so much from the wisdom of moms who have older children. My main take-away – to take the time to listen to people with Down syndrome themselves – was reinforced in this session.

VATTA Panel, moderated by Tamara Taggart
This was the best. Six adults with Down syndrome shared their experiences about growing up, working and moving out of their parents’ home. The panel was hilarious, heartfelt and real.  Tamara did an awesome job of moderating the lively, passionate panelists.  My take-away was from a mom of one of the participants. She said, My son has surprised me every step of the way. I need to allow Aaron the space to surprise me.  This means giving up some control.

The challenge after every conference is to figure out a way to integrate the conference learnings in real life.  My commitment is to continue to work on my own tendencies to over-protect and hover over my son.

My take-away was put to the test a few hours later.  On the way home, Aaron said he wanted to walk around the ferry by himself.  I protested, worried he’d get lost on the many decks.  I have my phone with me Mom, he said firmly.  I want to be independent. It doesn’t get any more clearer than that.  Listen to the people with Down syndrome.

OK, I said hesitantly, and off he went.  He returned about 20 minutes later with a big smile on his face, pleased to have found some freedom.  The hardest part of parenting has always been letting my children go.  But everybody has a right to grow up, including my son with Down syndrome.  I’m not sure how to do that, but I have a feeling if I just take the time to listen, Aaron will show me the way.

 

He is Down syndrome

EW_web_1

Photo by Goodside Photography goodsidephoto.com

The other day I was talking to Aaron and in the midst of our conversation I mentioned, “you have Down syndrome.” He looked at me, puzzled, and replied, “No, I am Down syndrome.”

I thought he had mixed up his verbs and corrected him,  “No, you have Down syndrome.”

He repeated firmly, more annoyed with me this time, “No Mom, I am Down syndrome.” He wasn’t mixing anything up. I was the one mixed up.

Who am I to say who he is or is not? He has the extra chromosome, not me.  I paused to wonder how often parents use language that makes us feel more comfortable and distances ourselves from disability. I know that I’ve been doing that for 16 years. I even used to lecture to health professionals about person-first language. Aaron was blowing person-first out of the water.

Speaking of which, I’m now asking Aaron’s consent to write about him.  (Contrary to popular belief, people with intellectual disabilities can understand consent). He said, ‘sure’ when I asked him about sharing this story.  Plus, he chose the photo that he wanted to accompany this post.

I’m finally waking up to the fact that it is Aaron’s Down syndrome, not mine. And so goes the hard work of parenting: allowing our children – all our children – to differentiate from us. He is not a mini-version of me, disability or not. It is high time that l take Aaron’s lead and govern myself accordingly.