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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.

 


 

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.
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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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Creative Ideas to Foster Communication

By Cristina Stanger, Self-Advocacy Liaison WRFN
*This article was originally published in the Family Pulse Newsletter November 2019*


Effective communication and emotional expression can be difficult, even at the best of times. The upcoming holiday season adds extra stress and strain to relationships; it is an overwhelming time for most, making communication both more important and harder to do. 
 
No person exists in a vacuum. We are all impacted by various elements throughout our day: a good night’s sleep, a pleasant visit with a friend, getting stuck in traffic, forgetting to take medication, a nice walk, a substitute personal support worker, a disagreement with a coworker, a favourite meal, an unexpected change in routine, etc. All of these types of things impact how we are feeling, and in turn, affect how much energy we will have to invest in communication with other people.
 
Communication challenges related to various exceptionalities can further complicate things. Perhaps you (or your loved one) are unable to communicate verbally. Perhaps you struggle to identify and express emotions. Perhaps your ability to read non-verbal cues is not as strong as you would like, leaving you with missing information. When I work with different individuals and families, finding more effective ways to communicate comes up often in discussion, particularly when trying to understand each other’s feelings. Here are some creative ideas you and your family may wish to explore:
 
Be general if you cannot be specific

  • Simply saying, “Something is wrong, but I am not ready to talk about it yet” gives loved ones an idea that you are working through something challenging, but also allows time to process things. Personally, I have needed as much as three days of time before I could even articulate what had happened to upset me.
  • Consider a signal system, such as a red, yellow, and green rock with a designated meaning, along with a specified location where you leave whichever rock best represents how you are feeling or how capable you feel to communicate. This gives family a general guideline about how best to interact with you at that particular time.

 
Be patient and gently check-in with each other, if possible

  • As I have trouble picking up some non-verbal cues, sometimes I misinterpret the demeanor of a loved one, usually assuming I’ve inadvertently done something to upset them. These days, I try and check-in with that person first before jumping to a conclusion.  I’ve found the question, “What are you thinking about?” to be very effective - 95% of the time my family member is caught up in thought about something completely unrelated to me. 
  • Accept “I don’t know” as a viable answer about how someone feels. Notice the question above isn’t “How are you feeling?” because sometimes finding the word for an emotion, or isolating the main feeling, is a real challenge for some individuals. In some cases, consulting with a professional psychological support can be helpful when processing important events or if you desire coaching on how to more effectively process your emotions.

 
Be creative and utilize a different medium to express yourself

  • Use the words of others who have been there to help guide you. Personally I’ve found reading works by authors who share my diagnosis to be, not only validating, but effective tools to explain what my exceptionality can mean in different situations. By finding short, accessible articles and memoirs, highlighting the sections I relate to (even making notes in the margins) and then sharing these with family members willing to read them, I have been able to give them some insight, even when I cannot explain something myself.
  • If you want to express your own feelings or ideas, but conversation or written word does not suit you, consider selecting/creating some other art form to communicate important ideas to the people you care about. For example, find a scene from a movie relevant to how you feel, make a collage of images, create a music playlist, etc.

 
Be strategic and set the stage for success

  • Allow time (hours or days, not just minutes) for emotional processing before discussing something that is emotionally charged. Give advance notice to discuss something important - avoid conversations that take someone by surprise when possible. For example, “I noticed you seemed upset about what happened at dance class today. I’d like to talk about it with you sometime, would Thursday after school be an okay time?”
  • A shared activity, particularly one where the participants are situated side-by-side, can be an effective environment to converse. The joint activity gives a starting point for the conversation, face-to-face interaction isn’t expected/necessary, and pauses in conversation are not as awkward. Going for a walk together, or going out for a car ride are my personal favourites.

Please bare in mind, this is not an exhaustive list. And as always, you know yourself and your family best, so these ideas are merely food for thought. I am not a perfect communicator, if anything, writing this article has reminded me about areas I would like to work on in my own life. I hope they’ve sparked something for you to consider as well.
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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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Navigating Periods of Transition

By Cristina Stanger, Self-Advocacy Liaison WRFN
*This article was originally published in the Family Pulse Newsletter August 2019*


Change has always thrown me for a loop. Before I was diagnosed with an exceptionality, a counsellor once told me, “Life transitions are hard for everyone, they just seem to be that much harder for you.” Now that I have a better understanding of my atypical neurology and how it impacts my ability to cope with change, this observation makes more sense. But change keeps happening, whether I like it or not. Whatever the nature of you or your loved one’s exceptionality, navigating change tends to be more involved compared to the average person.
 
Change brings unknowns and uncertainty, which is the scariest part for me, personally. As a youth, I used to long to be an adult because I thought that meant life became stable - you would go to work, do your job, come home, and have your happy routine. Gone would be the days of sorting out a new teacher (or teachers), new classmates, new classroom dynamics, and new expectations each-and-every September. Adulthood seemed so predictable, I thought I would get more control and life would have fewer ups-and-downs. Well, life experience has shown me that this is not the case, quite the opposite in fact. Adult life brings a whole new set of changes, and they tend to be far less predictable and come with far less warning: your car breaks down, your company is restructured, you lose a beloved pet. As Heraclitus put it, “Change is the only constant in life.” So the question becomes, how are we going to handle it?
 
There are a few tips and tricks I have developed to help myself navigate periods of transition that I will share with you. Many of these may seem obvious, but it can be helpful to see them written out as a concrete reminder. I also acknowledge that I am just one person, these are things that work for me and they may not be a good fit for everyone.

 

  1. Plan ahead when possible - If I know a change is coming, I am better off accepting it, rather than avoiding it. This gives me the opportunity to think ahead and plan for an optimal adjustment period. Experience has taught me that proactively putting supports in place is generally going to have a better outcome than reactively putting supports in place. This, of course, isn’t always possible as it is hard to anticipate every need or situation, but when one has a sense of what supports have worked in the past, implementing similar strategies is a good starting point.
  2. Set realistic expectations - I tend to compare myself to others who are already accustomed to a certain situation, and expect myself to perform at that level right away, but this is expecting too much. I always need to remind myself: there will be a learning curve, there are some things I can do well, and it is healthier to set goals for improvement rather than to expect perfection.
  3. Scale back - I try to remove the extras from my to-do list, and re-evaluate my commitments when faced with a period of change. I ask myself, ‘What is really important right now?’ and I try to focus on those things, eliminating the rest. This allow extra time and extra energy to be directed toward finding my way in the new experience or situation. Of all my suggestions, I find this has the biggest impact on my own ability to cope with something new.
  4. Focus on what you know - My brain intuitively jumps to every ‘what if’ I can think of, and I imagine every way things could go wrong. In order to calm myself down, I try to redirect myself to tangible facts (and sometimes I need a support person to help me). I also remind myself that the probability of my worst-case-scenarios is usually very small. I come up with a plan of action to use should I encounter a problem, taking comfort in this rather than feeding my anxiety by inventing future problems. This takes practice.
  5. Ask questions - This goes in tandem with suggestion 4. If there is key information I am missing, I am better off getting a factual answer rather than allowing my imagination to fill in the gaps. Sometimes talking to people who have ‘been there’ can be really helpful, although I acknowledge that networking to find these people, or finding the courage to socially engage with them, can be a challenge in-and-of-itself. When I’ve found it hard to reach out, I’ve had success asking friends and colleagues to direct me to an appropriate person, essentially borrowing the networks of others and allowing them to facilitate initial introductions (see suggestion 8).
  6. Visit new places in advance - I find the benefits of this are three-fold. Firstly, it takes away some of the unknowns so my mind isn’t busy imaging every possible detail of the new environment. Secondly, it provides a level of familiarity when I return, so the entire experience is not foreign. And thirdly, it allows me to anticipate some of the accommodations I may need.
  7. After the initial exposure, visualize - This works for me because I am a very visual person. I imagine myself going to the new place, or carrying out the new task I need to perform. This tends to work better after I have seen the place, or been shown the steps for the new task, so I am not worrying about the what-ifs of the situation. This mental practise helps build my confidence.
  8. Have a support network in place (and use it) - I used to hesitate to reach out for help, or it never even occurred to me to ask, incorrectly believing that everyone got where they were on their own. However, I was once challenged with the question: Do you like helping other people? To which, I responded “yes”. And it was proposed to me, that perhaps other people enjoy helping one-another too. This helped me to feel more comfortable reaching out.
  9. Ultimately, be gentle with yourself/child - Mistakes will be made, emotions will run high, fatigue and stress will exacerbate other issues. Change can be hard, but one cannot have personal growth without it. Remember that things may be difficult right now, at this moment in time, but they can improve and one will find a new normal eventually.

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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The 'Selfs' that Pave the Way Toward Self-Advocacy

By Cristina Stanger, Self-Advocacy Liaison, WRFN

*This article was originally published in the Family Pulse Newsletter May 2019*


Before I joined the WRFN team, I was a client. The Family Network encouraged and supported my self-advocacy efforts, as my drive to pursue this work started to grow. Self-advocacy is generally defined as speaking up for yourself, making your needs and preferences known, and finding your voice. My personal definition has become as follows: self-advocacy means becoming an active force in your own life to affect positive change.  It is also important to recognize self-advocacy as a learned skill.


As I began my role as the WRFN Self-Advocacy Liaison, I imagined trying to teach my past-self the self-advocacy skills I now know. I started to reflect on the time when I acquired a diagnosis of exceptionality - I was struggling to understand who I was and sort out what my challenges were. It was during this reflection that I had a revelation: learning self-advocacy was not a linear process and required a ready and willing state-of-mind. Upon further thought, I concluded that there are other ‘selfs’ that help pave the way toward self-advocacy, to build that readiness. I generated the following list: self-worth, self-awareness, self-acceptance, self-expression, and self-confidence. It is my experience that these selfs build upon each other to create a scaffolding to support the platform from which one self-advocates. I will touch on each of these items in turn.


Self-worth means acknowledging your inherent value as a person. In order to ask for what you need, it is important that you feel you are worthy and that you deserve to have what you need to be your best self. From my perspective, believing that you matter is the cornerstone of any self-advocacy effort.


Self-awareness is knowing your needs, your values, your temperament, etc. This can take practice and improves over time as one gains life experience. Depending on one’s exceptionality, self-awareness may be an area of challenge where some guidance may be needed. In order to advocate for what you need or express what your preferences are, an understanding of what you need and value is key.


Self-acceptance involves the acceptance of both your unique strengths and limitations. If you are in denial of your limitations, how can you possibly ask for what you need to overcome them? It has been my observation that as you become more in tune with your areas of weakness, your strengths will start to resonate more as well. Self-advocacy can then unfold as you utilize your strengths to work through barriers.


Self-expression is a sense of your own personal style and an understanding of how you most effectively communicate. This too, comes with practise. And for some individuals who struggle to express themselves, it may require some creative solutions (eg. self-expression using a musical playlist, a collage of images, a scene from a movie to explain how they feel or what is important to them).


Self-confidence is trust in yourself and your abilities to engage with the world. If you are able to get to know your strengths, then you are more likely to have the seeds from which to grow self-confidence. Once you believe you have something to offer, you will be more likely to take action towards self-advocacy so that you have the support you need to give something back to the world around you.


I am acutely aware that these aspects of self are much easier to define than they are to acquire. I know from experience that progress can be slow and hard to measure. They can be especially challenging to build if past negative experiences or concurrent mental health issues have undermined one’s sense of self. Professional counselling supports have been immensely helpful to me in this regard. The stronger your ‘selfs’ are, the stronger your foundation for self-advocacy will be.


That said, one does not have to have all these forms of self completely in order before one can self-advocate - that would be unrealistic. If you think back to my definition of ‘becoming an active force in your own life’, then you can start and apply self-advocacy efforts to your day-to-day. As with any new skill, it is helpful to start simple and build upon small successes. So, in this way, self-advocacy successes can help boost the other selfs in the form of a positive feedback loop.


I’ve noticed that it can be challenging for parents to gradually transfer the task of advocacy for their child to that child as they mature. And of course, each individual is different, and will be able to handle different amounts and forms of advocacy. However, you can help lay the groundwork with the other ‘selfs’ so that when the time comes for an individual to advocate for themselves, the scaffolding is there. You can’t force someone to be more self-accepting, but you can demonstrate it by accepting the individual for who it is they are. You cannot make someone else more self-confident, but you can cultivate their confidence by supporting ways for them to positively engage with the world.
But I think the most powerful way to teach these things is to actively pursue them yourself, leading by example. All the ‘selfs’, including self-advocacy, can be practised by anyone, regardless of age or the presence of a diagnostic label. Every individual will be faced with times when they need to find their voice. So take a moment to assess your own understanding of self and ask, where do I want to go from here?
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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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The Cycle of Grief and Acceptance Across One's Life Stages

By Cristina Stanger, Self-Advocacy Liaison, WRFN

*This article was originally published in the Family Pulse Newsletter February 2019*

In speaking with a parent recently about my work in the Ask A Self-Advocate Program, I mentioned how there can be an element of grief intertwined with the presenting issue. She immediately launched into an explanation of her grieving process following her child’s diagnosis, and while her experience is truly valid and important, that wasn’t what I had meant. I was referring to grief that can be experienced by the person with the exceptionality, and that may not occur at the time of diagnosis. Depending on the individual, periods of grief may recur over the course of our lifetime. At various life stages, we may need to lament our exceptionality before we can come to, or return to, a place of acceptance.
 

As someone who acquired a diagnosis of an invisible disability as an adult, my grief process may look different than that of someone who was diagnosed early in life or whose difference is more visually apparent. As validating as my diagnosis was in saying, yes, my struggles were real, it also solidified the fact I have an exceptionality, and I always will. I grieved the help I needed but never got. I grieved the psychological scars that developed over time because I didn’t understand why I was different. I grieved the years I lost trying to be something I wasn’t. I grieved the relationships that were never formed and the career that didn’t turn out as I expected. And of course I asked the question, “Why me?”.
 

This was an important and necessary process. I needed to come to terms with what I have been dealt in life. To get to a point where I was okay with it, a point where I was ready to move forward. This was not something I could rush. As much as I cognitively understood that my own self-acceptance would pave the way for the acceptance of others, I couldn’t force it.
With time, I gained an understanding that this is my journey and let go of the past. I learned more about what challenges I face, and I learned how to carry them with grace and self-compassion. Once I accepted my limitations, I had more energy to figure out how to work around them. The more I become comfortable with myself, the more others are comfortable with me and the way I operate. I acknowledge that, yes, sometimes things are hard, but that is okay, and I can get through it with the strategies that I have developed and with the help of the support network I have built. This didn’t happen overnight and required a lot of dedicated effort.
 

But then I get surprised. Something happens. Life changes. I start a new chapter. And my exceptionality suddenly takes on a new, and often unanticipated, meaning. I have to learn to navigate my disability again, just when I thought I’d sorted things out. I have to unpack what living with a disability means for me now in this new scenario, and sometimes that means I need to grieve again. Grief that my needs force my family to do things differently. Grief that the timeline of my life looks different from my peers. Grief that there will always be things that are hard for me, but easy for others. Grief that I still have a disability (because I got so good at managing it, I sometimes forget it is there).
 

For example, when my daughter started school, I knew she would need to adjust. But, I completely underestimated the way this new aspect of our lives would impact me directly. New interpersonal connections to navigate, new social expectations to decipher, new routines to adjust to, new demands on my limited organizational abilities. And I grieved again because these changes directly collided with areas where I tend to struggle. Just when I thought I had reached a new level of self-acceptance life happens, and I start to question things again.  Let me be clear, I don’t sit at home wallowing in my own self-pity. My disability doesn’t cause suffering, but it does create challenges I have to work through. New strategies are required. I have to figure out what I need and then advocate for it. Over time, the periods of acceptance in my life have become greater, and the periods of grief have become smaller.
 

Grief may revisit us across our life stages, but hopefully, you can see there is cycle and that acceptance can prevail. I felt it was important to highlight that grief is not a process unique to the family members of an individual with an exceptionality. Grief can be a part of the exceptional person’s experience. And even for those who are aware of their disability from very early on, it will take on new meaning for them as they grow and develop, as they see how they are exceptional in a new light and what that will mean going forward. What it means for them in middle school, in high school, as a young adulthood, starting a new job, in middle age, and so on. I have to actively accept my limitations on a daily basis, and then embrace the gifts that lie within my differences. And I go about my days leading a full life, just as anyone else tries to do. 
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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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Family Pulse-November 2019

Welcome to November! 

 

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

SEAC Updates 
Creative Ideas to Foster Communication
What's Happening at WRFN
Coffee Club Update
Upcoming Community Events

 

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

 

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WRFN Family Pulse - August 2019

Inside the August issue of Family Pulse you will find information about:

  • What's Happening at WRFN 
    • A New Chapter
    • Find Your Passion
    • a school workshop with WCDSB & WRDSB
    • The 'Exceptional Swings' golf tournament
    • Camp Day
  • Coffee Club updates
  • "Navigating Periods of Transition" by WRFN Self-Advocacy Liaison, Cristina Stanger
  • Upcoming community events

Read the online version of Family Pulse or download a pdf copy.  

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