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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.

 


 

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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Connecting through Board Games (plus recommendations)

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


As we all look for healthy ways to cope with pandemic protocols this winter, I feel that hobby board games have a lot to offer. They are one of my special interests, though, so I am a little biased. They offer benefits for all ages as a framework to practice turn-taking, good sportsmanship, critical thinking skills, creativity, and most of all, they’re FUN! As an exceptional individual, they also offer me other, more subtle, benefits: a shared activity that makes social interactions easier, an activity with clearly defined parameters and expectations, and a visual and tactile sensory experience in a quiet environment. For me, board games serve as a means to connect with others in an engaging way.
 
While many of us have fond memories of playing classic games like Monopoly, Checkers, or Uno, board game designs have truly evolved, and there are many other modern options available these days. Did you know that in some games, like Carcassonne, you build the game board with tiles as you play? Or, did you know there are cooperative games, like Hanabi, where all players work together to beat the game itself?
 
Given current public health guidelines, I thought I would highlight two specific categories of games. The first are games that people with a wide range of ages, abilities, and attention spans can enjoy together, involving as many people within a household as possible. For those who wish to engage with other households in a safe way, the second are games that can work really well virtually. At the very end I’ve briefly listed titles I recommend in other categories as well. A few of these are even available to borrow from a collection at the Waterloo Public Library. And a special thank you goes out to Marc and the team at J&J Cards and Collectibles (friendly, local game store) for their feedback in creating this list. Happy gaming!
 
Particularly Inclusive Family Games
These games are language-independent (no text), they involve simple yet meaningful decisions, have sturdy components, play in a short time frame, and are engaging for a diverse group of ages and abilities. It’s nice to gather around a table together for a fun, shared experience.

Tsuro (2-8 players) - Lay tiles to build out a path for your pawn to follow without colliding with other players or travelling off the board. While there is player-elimination involved, with a 10-15 minute play time, there isn’t much sting in losing. Last pawn standing wins!


Hues and Cues (3-10 players) - Describe a colour to other players without using its specific name. With 480 different swatches on the board, the closer the other players guess to the target swatch, the more points you both get! Note: This can still be played by those with a colour deficiency (colour-blind).


Drop It (2-4 players) - Drop geometric shapes into a vertical panel to score the most physics-defying points. It offers rules variations for different levels of difficulty in play. Note: The dexterity element does require some fine motor skills. 

 

Games that Play Well Virtually
These games can work as long as one household has a copy of the game with a person who is willing to manipulate the game components, and all households have access to a video conferencing platform. Some games may require digital files of the rules or player sheets to be sent to players in advance. I have used these games as a means to interact with my friends and family remotely, and we’ve always had a good time laughing and playing together.

 

Just One (plays best 5-7 players) - A cooperative game where players give one word clues to get the ‘guesser’ to guess a target word, but any duplicate clues cancel out and leave the guesser with less information to work with. This game can generate a lot of interesting conversation.


Codenames (plays best 4-8 players) - A team game where the ‘spymasters’ try to give their teammates clues to select certain words on a grid, while avoiding others. Which team will identify all their ‘codenames’ first? The game publisher even offers a free online platform so you don’t need to do any camera work to display the board: https://codenames.game/


That’s Pretty Clever! (plays best with 2-4) - Similarly to Yahtzee, dice results will determine what you can mark off on your player score sheet. The active player will select a die on their turn from a pool of coloured dice; any lower numbered dice remaining are available to their opponents. Set off chain reactions as you fill in some spaces that give bonuses in other areas. Most points wins! Note: Some dice colours may be difficult for those with colour deficiency to distinguish, but the dots (‘pips’) on the dice are different colours, to compensate.

 

There are other great games that can be played virtually if each participating household has a copy, such as Karuba, My City, Dominion, and Tiny Towns
 
Cristina Also Recommends (titles listed from simplest to more complex):
Children’s games (co-operative): My Little Orchard, Outfoxed, Zombie Kidz Evolution
Family games: Kingdomino, Point Salad, Ticket to Ride, Dixit, Forbidden Desert, Azul
2 player-only games: Jaipur, Schotten Totten, Onitama, Patchwork, Star Realms, Targi
Strategy games: Lords of Waterdeep, Catan, 7 Wonders, Wingspan, Concordia
Attacking-type games: King of Tokyo, Small World, Unmatched, Kemet
    

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Managing Overwhelm in the Big Wide World

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


During the COVID-19 shutdown, day-to-day tasks, like a trip to the grocery store, became very complex very quickly. As Ontario moved into stage 3 of reopening, we started to reintroduce aspects of our lives that we had abruptly cut out in March of this year. Many things now operate in new and different ways. So for myself, as an exceptional adult, I found going back out into the world, has been much more overwhelming than the shutdown itself.
 
I expect individuals without exceptionality will also share in this sense of ramped up intensity to daily life. While we are all staying at home as much as possible, our lives have become quieter, and as a result, we have now been resensitized to hustle and bustle. Traffic, noise pollution, excess visual stimuli might catch you by surprise. Your ability to plan and organize may feel more taxed than before because you are out of practice. Whether overwhelm is a new sensation for you, or you are familiar with it already, it is important to identify it in order to find ways to cope.
 
Here are some of the ways I experience overwhelm when I put myself out into the big wide world. Perhaps you will recognize some that you can relate to, or maybe you have other experiences of your own? This is by no means an exhaustive list.
Possible symptoms of overwhelm:

Decision fatigue: This involves feeling overwhelmed by choice, even small decisions seem hard, and I experience a self-generated pressure to make the “right choice” (even when there is no right or wrong outcome).


More intense social interactions:  Since I am out of practice everything feels more awkward and forced, and I second guess everything I say and do.


Emotional confusion: At times it can be hard to know what I am feeling, especially if something unexpected happens.  As a result, it can be hard to know what I need to get through a situation.


Generalized anxiety: Thoughts of worry infiltrate my mind, and I start to question things that I had previously been sure of.

 
Here are some of the techniques I use to help manage my own sense of overwhelm. As always, you know yourself and your family members best, so this is not a one-size-fits-all recommendation.
Possible coping strategies:

Build up slowly: I find I need to make a conscious effort to reintroduce only one or two new things to my life at a time, and then give myself a period of time to adjust. This approach is certainly slower, but reduces the chance of overwhelm and increases my odds of successful experiences.


Anticipate that things may not go as planned: I actively remind myself before I leave home, that what actually plays out may be different from what I am expecting. This makes the unanticipated changes a little less jaring.


It is okay to step back and try again later: If I find an experience is too overwhelming to handle, I give myself permission to remove myself. With the information I gain from a first attempt, I can come back later better prepared.


Schedule downtime: Contrary to what my conscience tells me, downtime is not a guilty pleasure. This time is necessary inorder to preserve my mental and physical health. By specifically planning this time, I feel less guilty and I give myself the opportunity to recover from overwhelm.


Be mindful of self-care (eating habits, sleeping, etc.): Cognitively, I know that self-care is important, but it is easy to neglect these things when overwhelmed. However, if I work to prioritize activities of self-care, the more resilient I become during potentially overwhelming experiences in the future.


Reflect on my experiences: When I find myself overwhelmed unexpectedly, I often write down notes about what happened leading up to that incident. This helps me reflect on what I might do differently next time, or identify triggers that I may try to avoid going forward. Sometimes I need a professional to guide me through this process.

 
We are all trying to find our way in the world amidst rapid societal change. Let us be kind to one another as we move forward, as everyone will respond and adapt differently; and especially, let us be kind to ourselves.

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Family Pulse-January 2021

Welcome to January! 

 

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

Inside this issue:
Connecting Through Board Games
SEAC Updates
Making Connections
Thank You!
What's Happening at WRFN
Information, Resources, & Opportunities

 

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

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Family Pulse-November 2020

Welcome to November! 

 

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

  • Working Through My All-or-Nothing Thinking
  • SEAC Updates
  • What's Happening at WRFN
  • Information, Resources, & Opportunities

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



 

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Family Pulse-September 2020

Welcome to September! 

 

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

Thank You, Cowan Foundation!
Back to School Q&A
Managing Overwhelm in the Big Wide World
SEAC Updates
What's Happening at WRFN
Information, Resources, & Opportunities

 

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

 

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How living with exceptionality has helped prepare me for the COVID-19 Crisis

By Cristina Stanger, WRFN Self-Advocacy Liaison

*This article was originally published in the Family Pulse Newsletter May 2020*

 

-- My heart goes out to those whose lives have already been touched by COVID-19, to those who are at high risk of infection and complications, and to those who are dealing with other hardships/tragedies that are compounded by this challenging social environment. And my deepest thanks to the frontline workers, on whom we all depend. --
 
While I may appear composed from the outside looking in, my ‘sky’ is so often falling because I find different aspects of the world around me confusing due to my exceptionalities. But given these unprecedented times of medical threats and rapid societal changes brought about by the coronavirus, I have noticed that I’ve been uncharacteristically calm throughout all this upheaval. And I thought, “Well, this is strange.” And then I got to wondering about why that might be?
 
A stay-at-home order inherently allows me to bypass many aspects of everyday life that typically overwhelm me. However, I don’t feel this accounts for my clarity of mind. Then I thought, “Is it possible that my life experiences, as an exceptional individual, have helped prepare me to navigate these current events?” My intuition is telling me ‘yes,’ both in terms of weathering the emotional storm and also in finding healthy coping strategies. By no means am I saying that I am handling this perfectly, but I thought it might be valuable to highlight some of the advantages my experience with exceptionality has afforded me in the context of the COVID-19 pandemic. And in doing so, my hope is that you will be reminded of your own wealth of experience, your own strength, and your own resilience in the face of adversity.
 
Some ways of feeling…
Firstly, there is grief. Particularly, the type of grief sparked when reality doesn’t match what you envisioned for yourself or your family. And this is paralleled by what we face today - celebrations postponed, unstable employment, education disrupted. These are examples of how our hopes and expectations for the future have been undermined by COVID-19. I have given myself permission to grieve. In acknowledging my grief, I can move through it, in my own unique, non-linear way, as I have done before.
 
Secondly, there is the anxiety that comes with uncertainty, with which I am well acquainted. I am sure that many of you reading this now have also had periods of time when you wondered, “What will my future hold?” When you asked, “How much longer can I go on like this?” I am asking myself similar questions again now. And I can employ the same techniques to navigate this uncertainty, such as: (1) identify my feelings and use them as a cue about what I might need, (2) stay present, as I cannot experience anxiety in the now, and (3) seek out support.
 
Thirdly, there is a familiarity with internal existential conflict. I had a three-year period in my life when I was working very hard to overcome obstacles, yet it felt like I was never getting anywhere, and I wondered what my purpose was. Progress was slow and hard to measure. However, during this time I did learn things, such as: (1) a sense of who I am as a person, rather than valuing myself based on my productivity (‘being’ rather than ‘doing’) (2) a more forgiving and flexible perception of the passage of time (I will get there when I get there) and (3) the benefit of forming a routine to guide myself through unstructured time (pets are immensely helpful in this regard). While it may feel as if I am currently stuck in limbo, I remind myself that I still have value, I still matter.
 
Some ways of coping...
I also understand the need to be gentle with myself. I try to focus on what I can control and take things one step at a time. There are good and bad days when living with exceptionality. So too have I had good and bad days during this pandemic. Identifying which kind of day I am having is key to weathering this storm. Hard days warrant more self-compassion. Good days allow me to take small steps forward.
 
Adaptations are something that those with exceptionality work with on a daily basis. I have had to find different ways of doing things that other people might take for granted. So, I am able to view COVID-19 shutdown as an opportunity to use my creative problem solving. Knowing my strengths and weaknesses also comes into play, and I can work within my support circle (while socially distancing) to divide and conquer challenges.
 
A strategy of gratitude is relatively new to me, but I have found it incredibly grounding. Thinking about what I am grateful for helps actively shift my inner focus from what is negative to what is positive. And whether I am dealing with exceptionality or COVID-19, a lens of positivity can work wonders in finding the courage to carry on.
 
Finally, there is power in acknowledging the journey. The future may be uncertain but taking pause to honour the struggles I have already weathered, can be helpful. I do not feel that I am strong in spite of my exceptionalities, but rather I am stronger because of them. My hope is the same will be said for the COVID-19 pandemic, both on an individual level, and for society as a whole. Please try to give yourself credit for navigating these unforeseen challenges; let’s become stronger because of them.
 -----
If you or your family members would like to discuss this, or any other topic, please reach out to Cristina through the Ask A Self-Advocate program (AASA) via our Online Booking Request Form. As with all WRFN programming, the AASA program is provided at no charge.

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Family Pulse-May 2020

Welcome to May! 

 

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

A message from Sue Simpson
How Living with Exceptionality has Helped Prepare Me
Steph's Corner
SEAC Updates
What's Happening at WRFN
Information, Resources, & Opportunities

 

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

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Family Pulse-February 2020

Welcome to February! 

 

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

SEAC Updates 
What's Happening at WRFN
Coffee Club Update

Explain What You Need—My philosophy on disclosing my exceptionality
Upcoming Community Events

 

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

 

*NOTE: please find some Newsletter corrections with regards to programming at the Woolwich Counselling Centre.

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Explain What You Need - My philosophy on disclosing my exceptionality

By Cristina Stanger, Self-Advocacy Liaison WRFN

*This article was originally published in the Family Pulse Newsletter February 2020*

 

When meeting with clients in my role as Self-Advocacy Liaison, I generally disclose my own diagnoses of exceptionality within the first 15 minutes of an appointment.

 

With that in mind, it may surprise you to know that I am fairly guarded in sharing my diagnoses in my day-to-day life. With time and practise, I’ve developed a strategy to side-step full disclosure of a formal, medical diagnosis. Instead I describe what accommodations I require, or what exceptionalities I have in a practical sense, without getting too technical. I’ve heard this described as ‘partial disclosure’ by another self-advocate, but I find that term confusing; I prefer to think of my approach as “explaining what I need” on an as-needed basis.
 
Let me draw a parallel to personal finances. Generally speaking, one does not openly share personal financial information with people outside of one’s inner circle of support (those who do are usually committing a social blunder). Just as I don’t volunteer my personal financial details unless absolutely necessary, I also don’t volunteer my personal medical details any more than necessary either. I consider a diagnostic term to be almost like medical currancy - very valuable and very personal. And in my experience, using a diagnostic term isn’t necessary or helpful in many situations.
 
The reasons why I think very carefully about full disclosure:

  • I would be sharing very important information about myself, and that action cannot be undone.
  • I can request accommodations without disclosure of a formal medical diagnosis, based on my understanding of the Accessibility for Ontarians with Disabilities Act.
  • I have no way of knowing how this information will be received; Do they have a preconceived notion about my condition? Were they prepared to receive such important and delicate information?
  • I do not know for certain what will be done with my medical information (even if I have expectations about what should be done from a confidentiality standpoint).
  • It allows space for someone to question my diagnosis based on their own understanding (or lack thereof) of a diagnostic term. As a result, I may not get the support I need if they make their own assumptions.
  • Full disclosure makes me more vulnerable to discrimination. While this may seem pessimistic, I think it is a realistic consideration.

The reasons why I find explaining what I need to be more effective:

  • It doesn’t expect too much of the person receiving the information. It took me years to understand my own diagnoses, including the medical terminology, so how can I expect someone else to do this quickly and accurately?
  • It gives concrete information for others to work with. Most people want to be helpful - so explaining what I need allows them to help me more effectively and to remove the guesswork . Eg. “Sometimes I get overwhelmed in crowds, is there a quiet space I can use to unwind if I need it?”
  • This approach subtly acknowledges that I do have some form of difference or exceptionality, so it doesn’t leave people wondering why I might be doing things a little differently from the status quo.
  • By explaining what I need to be successful, it shows that I am trying to work and contribute at my highest level of capability. It demonstrates a level of personal awareness and understanding, which is seen as a positive attribute by others.
  • Explaining a need or difference without a diagnostic term makes me less vulnerable to misconceptions or misinformation. And, for some reason, it seems harder for others to question a subjective explanation of need versus an objectively stated medical label.
  • It allows for relationship building to work toward a full disclosure down the road, if I deem it appropriate to do so. Eg. “Remember how I need a decluttered workspace, and I don’t have a lot of stamina for highly social events? That’s actually because I have xyz. I wanted you to know this because abc.”

With this approach, I only tell others what they need to know, when they need to know it. I don’t have personal experience disclosing on behalf of a child, but I still believe explaining how best to support your child will get you farther on a practical level than focusing on diagnostic terms.
 
There are times when full disclosure may be appropriate, but even then, it can still be paired with an explanation of need to be most effective. In the case of a medical practitioner, I will disclose my diagnosis and then follow it up with relevant information. For example, at a physiotherapy appointment I might say, “I have xyz, which means I have a high pain tolerance and I have difficulty localizing pain. So I may have trouble answering some of your questions.” I try not to assume a medical professional will be adequately or accurately informed about my particular conditions; it is not humanly possible for them to be up to date on everything. Taking the initiative to explain the relevance of my medical diagnosis within a certain context becomes a form of self-advocacy.
 
As always, this is my personal philosophy. Every person and situation is different, and as such, may require a different approach to disclosure. Whatever you choose to do when it comes to disclosure of exceptionality, whether for yourself or a family member, please use your best judgement and make that choice thoughtfully.
 
If you or your family members would like to discuss this, or another topic, please reach out to Cristina through the Ask A Self-Advocate program (AASA) via our Online Booking Request Form. As with all WRFN programming, the AASA program is provided at no charge.

 

 

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