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From time to time, the Waterloo Region Family Network (WRFN) is asked to distribute information on behalf of third parties. WRFN provides general information to self-advocates and families of children with special needs. The information provided on this website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider. WRFN is not responsible for any information or services provided by third parties. You are urged to use independent judgment when considering any resource.

 


 

Grace Amidst Change

By Cristina Stanger, Self-Advocacy Liaison, WRFN
*This article was originally published in the Family Pulse Newsletter August 2022*

 

I’m finding myself in the midst of a lot of changes lately. We, at WRFN, are transitioning back to in-office work. We are doing so with the absence of my well-respected and loved colleague, Steph, who passed away this spring. My family is moving houses. My children are reaching new milestones. So to be completely honest, I am writing this article for myself as much as I am writing for you, the reader. I think we can all use a reminder to be gentle with ourselves, especially in the midst of changes.
 
Heraclitus is known to have said, “Change is the only constant.” (Personally, I always thought dirty laundry was the one constant in life, but since worn clothes change from clean to dirty, I suppose Heraclitus accounted for that too). If anything, living during a pandemic makes the reality of change even more apparent. Benjamin Franklin took Heraclitus’ statement one step further saying, “Change is the only constant in life. One’s ability to adapt to those changes will determine your success in life.” Well that sounds daunting, doesn’t it? This may be true, but it’s certainly not easy. Guess what? Sometimes I just don’t feel like adapting, it’s hard work for me. I was once told by a professional that, “change is hard for everyone, but it seems especially hard for you,” – so I don’t think my aversion to change is imagined.
 
And because making constant adjustments is very draining, I find myself working through frequent negative thoughts, frustrations and self-criticisms; this is what brings me to the concept of grace, both for myself and for others. The word ‘grace’ can have many different meanings, but I am thinking of it in terms of being considerate, kind, or merciful. In order to counteract those ominous quotes about change, I thought I would look up a few about grace to help see me through.

  • “Grace is the voice that calls us to change and then gives us the power to pull it off.” - Max Lucado
  • “Grace, like water, flows to the lowest part.” - Philip Yancey
  • “For grace is given not because we have done good works, but in order that we may be able to do them” - St. Augustine of Hippo
  • “Grace means that all of your mistakes now serve a purpose instead of serving shame.” - Brene Brown (I will augment this last quote with my own spin – Grace means that all of my mistakes now serve to facilitate my adaptation to change, rather than serving guilt or shame).

 
Grace to get me through these challenging times:

  • I am struggling with the loss of flexibility that I had with remote work. Grace.
  • My colleagues and I are learning to work without Steph’s physical presence. Grace.
  • My children need more mom time, more reassurance, and more cuddles as we move. Grace.
  • I can’t remember where I packed an important item. Grace.
  • My approach to pandemic public health measures is different from those of other citizens. Grace.
  • I am too tired or sad to do anymore than the bare minimum. Grace.

 
So if you find yourself coping with a lot of change these days, as I am, maybe you’ll benefit from reading these quotes about grace too. Let’s all be a little gentler with ourselves.

Rachel Cave at 3:03 PM
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Everyone is REALLY Awesome

By Cristina Stanger, Self-Advocacy Liaison, WRFN
*This article was originally published in the Family Pulse Newsletter May 2022*

 

Sometimes you come across a product that speaks to you. I really like the “Everyone is Awesome” Lego® set (40516) for the messages of inclusion and diversity it represents. I purchased it as a shared-activity for my children that would facilitate discussions about race, sexual orientation, and gender identity. My seven-year-old built the wall, my four-year-old assembled the people, and we engaged in important conversations. I chalked it up to a win.

 

 

But as we built it, I kept feeling like the idea could have gone farther. There was a clear lack of disability representation, and that seemed to me like a missed opportunity. Afterall, it is said that nearly a third of all people will experience disability at some point in their lifetime. So I determined that at least 4 of the 11 figures needed a visible exceptionality (although in reality many are invisible, like mine). I started wondering if I could modify my set to be more inclusive of those with exceptionalities, in addition to the marginalised groups already being celebrated.


It wasn’t long before I was pouring over Lego® sets online looking for accessories I could incorporate. Some sets did have one or two disability-related pieces, but I wanted to take the idea farther, so I settled on ordering piece-meal through eBay. Seeing how many different exceptionalities I could represent with the 11 figures was a fun challenge. And thus, my little passion project was born. #EveryoneIsREALLYAwesome.
 
You may have seen some of these images on our WRFN media feeds already, and I would  like to walk you through the modifications I made and my logic behind them:

 

 

You’ll notice that I did not change the background at all as these coloured stripes carry strong meaning for the communities they represent, and they are well understood within society as a whole.

 

 

I rearranged the components of the figures, because after all, we are not one dimensional, and some people will identify with more than one of the represented groups. I did, however, keep the hand and face components paired together to be more in keeping with race representation.

 

 

I spread the figures out, because I needed to create physical space for the tools and support needs of those with disabilities. In a way, it is also a metaphorical space for our exceptional needs which are so often overlooked or ignored. I felt this “flying geese” formation generated a nice sense of community as well.

 

 

In the end I modified eight of the 11 figures.

  • Service dog - visual impairment, hearing impairment, emotional support needs, etc.
  • Backpack - medical equipment, homelessness
  • Hat with visor and ear protection - sensory sensitivities, autism
  • Wheelchair - physical disability
  • Helmet - personal safety needs
  • Tablet - augmentative communication device
  • Hand removed - congenital difference, amputation
  • Cane - visual impairment, physical disability

And I like to think that the remaining three figures have invisible exceptionalities such as Tourette’s Syndrome, ADHD, schizophrenia, or chronic pain.

And here is the end result:

 

 

As a person with invisible exceptionalities, I am still on the lookout for signs of inclusion and representation in businesses and organizations. If they welcome and support other under represented groups, they will likely welcome and support my neurodivergent self as well. Waterloo Region Family Network plans to display this customized set in our new office in the near future, so please check it out the next time you visit!

You are seen. You are valued.

Leah Bowman at 11:12 AM
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Family Pulse-May 2022

Welcome to May! 

 

Inside the May issue of Family Pulse you will find information on:

SEAC Updates

Everyone is REALLY Awesome

A New Chapter
What's Happening at WRFN
Community Info, Resources & Opportunities

 

You can read the online version of Family Pulse here or download a pdf copy. 

Leah Bowman at 11:07 AM
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How am I feeling and what would best serve?

By Cristina Stanger, Self-Advocacy Liaison, WRFN
*This article was originally published in the Family Pulse Newsletter February 2022*

 

Over the past several years, I have spent a lot of my time and energy learning to identify how I am feeling. While this ability may come naturally to some, it does not for me. I can explain or define various words for emotions, but I cannot always notice different feelings I am experiencing or find words to express them in the moment. This is known as ‘alexithymia’ - which, if you break down the Greek root-words, means ‘a lack of words for one’s emotions.’ This is a psychological concept, rather than a psychological diagnosis. It can be experienced by people with any type of neurology, though it appears to be more prevalent among neurodivergent populations.
 
I have been able to make some gains in my ability to label the emotions I experience with effort, practice, and professional guidance. Then along comes the pandemic. With so much going on and so many different factors at play, I’m left with a lot of space for emotional confusion. But I keep trying, and I am learning to ‘check-in’ with myself more often, so I am more aware of what and how I am feeling. How I am feeling also seems to change more frequently, and more suddenly, during the pandemic - as I am sure many of you reading this can relate to. This is not an easy time.
 
After identifying my feeling(s), I try to next identify what I need. Again, during the pandemic, this proves even more challenging. Identifying what I need almost feels like a cruel joke - I need a large block of downtime free of children, I need to visit with my sister, I need a vaccine for my four-year-old. What I need often isn't possible right now. This is further complicated by a lot of unknowns. I get caught up cycling through endless possible outcomes, falling back to my instinctive (unhealthy) tendency to try and find the ‘right’ answer. Faced with hard choices, there often isn’t a clear solution.
 
But a mentor of mine taught me a new question to ask myself: What would best serve? This can be applied to either oneself, or one’s household. I have found this approach to be immensely helpful, and I’d like to share why. First, this question steers me away from the desire to find a clear right-or-wrong solution and directs me toward thinking about what solution simply makes the most sense for me right now. Which leads to the second benefit. This question helps account for the context of the given situation. And finally, while I am still acknowledging my needs to a certain degree, I am also drawing my attention to what is attainable. What would best serve? Seriously, I have contemplated getting ‘what would best serve?’ tattooed on my arm because I could use the constant reminder that perfect solutions don’t exist.
 
So, whether you find your feelings easily, or you need some resources (family, friend, professional) to coach you through, I hope you can find some meaning in there somewhere. And now I ask you, “What would best serve you, in your given context, in this given moment, with the options you have available?” I will ask myself the same thing.

 

 

 

Leah Bowman at 10:09 AM
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Family Pulse-February 2022

Welcome to February! 

 

Inside the February issue of Family Pulse you will find information on:

SEAC Updates

How am I Feeling & What Would Best Serve? 

Steph's Corner
What's Happening at WRFN
Community Info, Resources and Opportunities 

 

You can read the online version of Family Pulse here or download a pdf copy. 

Leah Bowman at 9:56 AM
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