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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.

 


 

Same Storm, Different Boats

By Cristina Stanger, Self-Advocacy Liaison, WRFN
*This article was originally published in the Family Pulse Newsletter August 2021*

 

Along with pandemic catch-phrases like ‘pivot’ and ‘seven day rolling average’, we often hear the phrase “we are all in this together” - which I agree with, it is an important, community-minded sentiment. But I also felt that it never quite captured the whole picture. Yes, we are all navigating pandemic life, together, as a society, as a community, and many of these strange pandemic experiences are shared. But we navigate the pandemic as individuals as well, the lived experience of the pandemic, as a whole, will be quite different from person to person. Various factors will significantly impact our overall experience: introvert or extrovert; empty nesters, or family with young children; frontline worker, laid off, or working from home; living alone, living with others, or living in a congregate setting; family member with exceptional needs, or living with high risk health conditions. So many different aspects are at play, and throughout the pandemic you have had to make decisions about what you need, what you are comfortable with, and what makes the most sense for you and those you love, in the context of important public health guidelines.
 
This spring, I saw some messaging from the famed Ottawa Public Health social media outreach: “We may be in the same storm, but we are not all in the same boat. It’s okay not to be okay, help is available.” {Twitter, Mar 5, 2021} Same storm, different boats: for me, this finally encapsulated what I had been unable to explain before. Together, as a community, we weather this pandemic storm; each of us riding out the storm in our own unique boats. And, I find this especially helpful to remember as we edge our way back toward life as-it-once-was, because lately I find myself drawn toward comparison: So-and-so is doing this now, should I be doing that too? It is easy to get caught up in what others are doing, when we are unsure of what we want our own approach to be. But I am in my boat, and I have to make my own decisions about how to sail it.
 
So sail your boat as best you can, ask for help when needed, and we will see each other again on the other side of the storm.

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Family Pulse-August 2021

Welcome to August!

 

Inside this issue:

SEAC Updates
Same Storm, Different Boats
What's Happening at WRFN
Steph's Corner
Community Information, Resources and Opportunities

 

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

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Family Pulse-July 2021

Welcome to July! 

 

Inside this issue:

Evening of Elegance @home - WRFN's Signature Event
SEAC Updates
Of Joy and Sorrow
What's Happening at WRFN
Steph's Corner
Community Information, Resources and Opportunities

 

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

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Family Pulse-June 2021

Welcome to June! 

 

Inside this issue:

SEAC Updates 
New Seasons

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

 

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

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More often than not, I use "exceptional"

By Cristina Stanger, Self-Advocacy Liaison, WRFN
*This article was originally published in the Family Pulse Newsletter May 2021*


Semantics can be a tricky thing. Language is constantly evolving in all facets of society. But words also carry a lot of weight, and I try to be very deliberate in how I choose them.
 
Exceptional. Special needs. Disability. Disorder. Difference. There are so many options used in the space surrounding the individuals and families we support; it can be intimidating, and sometimes confusing, as we strive to respect the rights, needs and values of others as we speak.
 
It is also important that the words we use communicate our intended meaning. I once saw an “Abilities Office,” and while I appreciate the effort to highlight the positive, it was not particularly clear to me who that office was meant to serve, and that can be problematic too. So I thought I would share my take on the terminology of the day; when do I use what term, and why.
 
My neurology will always be different from the average person. Physiologically speaking, I am the exception to the rule. Thus, I am exceptional. For a lot of my day-to-day life, I don’t really think about this fact. It doesn’t come up, it’s not relevant, or I’m just busy being me and living life. This difference is there, underlying many aspects of my person and my experience, but it is not really an issue.
 
When I am in an environment or situation that conflicts with my exceptionality, then some accommodations are required. From my perspective, this is when I have a special need. I need accommodations to help me better operate in a world that wasn’t really designed with me in mind. By meeting this special need, I am able to participate, to be included, to feel valued.
 
If my special need in a given situation is not or cannot be met, that can feel debilitating. I am disabled because I am not able to participate in the activity, event, or the environment. It is at these times that I feel like I have a disability. And it’s okay to say that. Some people are afraid to use the word disability for fear of causing offense. Conversely, other people use the term disability very freely, not always considering the weight of the word. I fall somewhere in the middle. Perhaps, it’s easier for me to use the word disability in reference to my own self, rather than using it in the context of someone else, so that may be a consideration too.
 
Generally speaking, I don’t mind what words others use, as long as they are coming from a genuinely well-intentioned place. If there is a blatant misstep I try to politely educate on why a different choice of words might be preferred.
 
So in summary: I am always exceptional because I am “built” differently. I will have a special need when my exceptionality and environment are not inherently compatible. I feel disabled when this special need goes unmet, or simply cannot be accommodated.
 
It’s impossible to find one word that will make everyone happy and that will be universally understood or adopted. And I sometimes wonder, what language will we be using 20 years from now? But for right here, and right now, I choose “exceptional” more often than not.

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Family Pulse-May 2021

Welcome to May! 

 

Inside this issue:

  • SEAC Updates 
  • Evening of Elegance @home
  • More often than not, I use "exceptional"
  • What's Happening at WRFN
  • Steph's Corner
  • Community Information, Resources and Opportunities

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

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Family Pulse-April 2021

Welcome to April! 

 

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

SEAC Updates 
Save the Date
Always Hope
What's Happening at WRFN
Steph's Corner
Community Information, Resources and Opportunities

 

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

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Reflecting on Growth

By Cristina Stanger, Self-Advocacy Liaison, WRFN
*This article was originally published in the Family Pulse Newsletter March 2021*

 

I have worked through some trying times, in part because my exceptionality went undetected, and thus unsupported, for many years. Sometimes I look back on that period with sadness, but at other times I look back and think about how far I’ve come. In other words, I focus on growth. And now, once again, I find myself turning to growth as a tool to gain perspective.
 
It has been nearly a year since we began altering our day-to-day lives as a coordinated response to COVID-19 in our community. I have found the ongoing protocols, the ever-present challenges, and the continued uncertainty about the future, are all weighing more heavily on me lately. And as my days blur together, and the passage of time feels simultaneously slow and rapid, I started to uncover some areas of growth as I reflected on the trials of this past year. My hope is that you might be able to find growth too, if you give it some consideration.
 
As an individual I have grown by learning new things and reviving old skills. And to be clear, I do not mean cultivating a new hobby; a novel leisure activity may feel completely out of reach if you have found yourself or your family operating in survival mode for the past year. I suggest looking for smaller things. For me, I developed positive habits in the kitchen, minimizing food waste as I stretched out the time between grocery runs. I practiced my French while supporting my child with remote learning. I learned several digital platforms and have made use of them to connect with friends and family, both locally and abroad. I even discovered some tools that I can use in the future to help me better meet some of my special needs.
 
Areas of growth can extent to a family unit too. Have you and your family created any new traditions? I began Cinema Saturdays and Ice Cream Sundae Sundays as a way to distinguish weekends from weekdays. I am fairly certain that these will be long standing traditions in my house, long after this pandemic is behind us. We have also gotten creative in our virtual interactions with extended family by doing storytime, board games, crafts, and pizza parties online.
 
I have observed community growth as well. Organizations, such as libraries and EarlyON centres, have pivoted to provide services in new ways. There has been community building between neighbours as they share ideas and resources. I have seen renewed interest in natural areas and increased use of outdoor playgrounds and community ice rinks.
 
And as I muddle along as best I can on this journey, I find taking pause to seek out the positive growth helps me to see my times of struggle in a different light. As the pandemic continues to stretch us and test us, we are also growing along the way.

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Family Pulse-March 2021

Welcome to March! 

 

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

Inside this issue:
SEAC Updates

Save the Date

Reflecting on Growth

What's Happening at WRFN
Community Information, Resources, & Opportunities

 

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

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Working Through my All-or-Nothing Thinking

By Cristina Stanger, Self-Advocacy Liaison, WRFN
*This article was originally published in the Family Pulse Newsletter November 2020*


All-or-nothing thinking is a pattern of thought that I have been predisposed to my whole life. It may also be referred to as black-and-white thinking, or thinking in extremes. Whatever you want to call it, it is usually not the most helpful way to approach a situation. Challenging myself to think differently takes some dedicated effort, and I have used Cognitive Behaviour Therapy to help work through this. One trick I’ve learned to help identify this type of thinking is to monitor my own choice of words. Terms that imply absolutes will show up in both my internal dialogue and in my external conversations (ex. always, never, right, wrong). Watch for these in my anecdotes below; they don’t leave much wiggle room to consider other possibilities. All-or-nothing thinking can creep into my thought processes in all kinds of different ways, from house cleaning, to pursuing hobbies, to holiday planning.
 
While a bathroom may seem trivial, it became a significant issue for me as I only wanted to clean it the “right” way (from showerhead to baseboards) which took an impractical amount of time, not to mention that the process was so involved that the task became overwhelming. This became paralyzing and then I wouldn’t clean my bathroom at all. With time, I learned to  ask myself, “What truly matters here? What do I value?” In this case, I did not want to live in a perpetually grimy bathroom, so I needed to make the cleaning task manageable. I had to prioritize various areas of the bathroom, and look at the steps needed to clean each element, rather than looking at the entire bathroom all at once (and the baseboards were deemed a once-in-a-while thing).
 
Other times, all-or-nothing thinking infiltrates an activity I usually enjoy. If I make an error on an art project, I may want to give up altogether and genuinely feel that I wasted materials, and that I never should have bothered trying. This is neither true, nor is it fair to myself, but that is where my mind goes first and I have to work my way out of that thinking. Perfectionism and all-or-nothing thinking tend to go hand in hand. This can suck all the fun and entertainment out of what was intended as an enjoyable endeavour.  Gradually, I have learned to stop and prompt myself with the questions “What was I able to do? What else can I do?” This gives room to look for alternatives, and I can consider other possibilities between failure and perfection. In this scenario, it helps me to look at art as a process, promoting a growth mindset. Trust me, I don’t get to this headspace every time, or on the first try, but I am learning to manage my all-or-nothing tendency.
 
I found it amusing when I realized I was actually seeking out the grey areas in my thought processes, because as a general rule, I find ‘grey areas’ in life quite confusing. I bring this up now because I know many people, myself included, may be frustrated by the way the coronavirus has forced us to change many of the things that we do, including altering our traditions for various holidays. And while it can feel like a holiday is being lost, if I stop to ask myself the two questions (1. What do I value?, 2. What is it that I can do?) I am able to find something positive to hold on to, something worth celebrating. Whatever colours you use to mark the holiday season, I hope you can identify any black-and-white thinking and seek out a little grey instead.

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