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.
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.
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.
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.
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
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.