As a parent, you have dreams for your kids. You dream that they will find their passion in life, that they will be successful, that they will have lasting happiness. You dream of sports teams, sleepovers and birthday parties. You dream that their life will lead them places you never thought possible. You don't dream of weekly medical appointments, of hearing the words "we're not sure what's going on" in relation to your kid's health, or of what it's like to wait in the Operating Room's Waiting Room. You certainly don't dream of your child's early death.
Next week will be the 18th time Jacob's gone through the surgical suite doors. 18. 18 times I've sat here in the time leading up to it, repeating to myself "they're going to find what they're going to find",fully aware that we can't control the results. 18 times I will have sat the night before wondering how the results will change the course of treatment, wondering if the intestinal polyps are changing, wondering if this will be the time that we hear the words "remission". 18 times I will have kissed my son's forehead as he's drifted off, and paced the floor of the waiting room, waiting for that electronic sign to change his status to "In Recovery".
This past year I think has been one of the most difficult for Jacob, even though we've had other serious crises in the past. Since the summer, Jacob has been unable to maintain his weight, even though he has grown a lot taller. He now looks like a walking skeleton. At times, he doesn't even have the energy to go do his favorite outdoor thing - Pokemon Go, I know he's really sick when that happens. His pain in his joints and headaches have been really bad, and his eyes continue to go into on/off inflammation flare. He continues to vomit daily after 3 years. He's also having more intense symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). And that's just some of the physical issues.
As with any disease, sooner or later you run out of treatment options and this is where we're at. We're dangling from the precipice with a frayed rope and using all our strength to hold on for the ride.
In Crohn's Disease treatment, the goal is always for the patient to achieve remission as defined by the absence of detectable changes in the lining of the gut. The longer a person with Crohn's Disease is in flare, the greater risk of permanent damage and of cellular mutations leading to the development of cancers, goes up. 6 years is a long time to go without reaching remission. And with no real significant additions to the line of Crohn's treatments, there doesn't seem to be much we can do to get to the point of remission, except hope for spontaneous remission, which would be rare for a kid with such a severe level of disease. All we can do is hope that there will be more options coming very soon.
With surgery happening June 1, I'm not sure if Jacob will be able to attend this year's Gutsy Walk. I have already told him that I will go and walk for him on June 3. I'll walk because awareness is everything. It's more than just a stomach-ache, food not agreeing with you, or having frequent diarrhea. It takes more than just eating the right thing, or taking the right supplement, for the most of us to achieve true remission. I'll walk because I've held Jacob's hand through painful procedures, wiping away his tears and no other parent should have to do that. I'll walk for all the hours I've spent preparing information for school accommodations, e-mailing doctors and reading research. I'll walk for the fear that we hold for our children's future and the fears that they hold deep inside. I'll walk because enough is enough, we need to cure this disease.
Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts
Tuesday, May 29, 2018
Friday, May 11, 2018
What I Would Teach to New Doctors
Dear New Doctor,
Congratulations! All of your hard work and long hours has paid off, and now you will be part of the next generation of the medical community. Your role and service is so critical to those of us living with chronic illnesses, without your help, the quality of our lives would take a really big nosedive. We depend on your knowledge and skill that you have cultivated and grown over the years in order to be successful in our lives, just as you depend on us in order to have people to provide services to. Thank you for your commitment to trying to help your patients to achieve their dreams through improving and maintaining their health.
As you leave behind medical school for your future careers in your chosen field, there's a few things that I'd like for you to consider as you set up your practice. As a patient, I've noticed that there are a lot of differences between the ways that doctors interact with their patients, some of which are helpful and some of which ... are not so helpful. I want you to be able to deliver the best possible care to your patients, and I want your patients to feel that they are getting the best possible care from a doctor who truly does care about their patient as a whole.
The first thing I'd like for you to remember in your day-to-day encounters with patients is that we are all unique. You spent a very long time in medical school and in training, learning the "textbook" definitions of many of the illnesses out there. You have amassed this great wealth of knowledge which is invaluable to us as patients. However, not all of us will fit into your neat little textbook definition, and definitely not all of us will be effected the same way. For example, my Crohn's disease wasn't an obvious case. In fact, at first I was diagnosed with Ulcerative Colitis. Even after my colectomy, when my duodenum started showing signs of inflammation, I was told that it acted more like a colon with the whole section being effected rather than having skip lesions, or patches of inflammation. It wasn't until months later when they did a pill-cam study on me did they find that I had these skip lesions, a hallmark of Crohn's Disease.
Next up, don't assume. We've all heard the saying, and it's not something I can repeat here as it's not PG-13. However, a lot of assumptions are made, without even checking in with the patient to see the accuracy of those assumptions. When you make the wrong assumptions, it can seriously impact on the quality of care your patient receives, causing their health to suffer, and impacts the patient-doctor relationship. For example, a lot of chronically ill people live with depression and anxiety. However, not all of your patients will have depression and anxiety as well. Despite my health, which at times really sucks, I am HAPPY. I feel like I have, for the most part, a great life. Yes, I struggle, but every single person on this planet has their own personal struggles. When my healthcare providers use psychological assessment forms to judge off a piece of paper whether I am depressed, there's often no question asking "HOW HAPPY ARE YOU?". Instead you are asked "In the past two weeks, rate how often you have felt sad/or cried/or worried/etc." There's no option to say "I really didn't feel sad". And the paper also doesn't allow you to put your answer into any sort of context that explains your choice. Like "Do you vomit frequently?", well, I have Crohn's, vomiting can be par for the course.
It's also assumed that because I use a wheelchair to improve the quality of my life, that I don't do anything physically active. This is a very dangerous assumption because it immediately closes the door on exploring other reasons why your patient feels they can't do certain things without using medical device assistance. When you make assumptions, you run the risk of not providing the best possible care to your patients.
Listen to your patient. I can't stress this little word 'listen' enough. I come to you with my health story, tell you how my illness has been impacting me, and seek your input from that knowledge base you have built. When you talk over me, interrupt me unnecessarily, or just plain not acknowledge my complaint, it's not respectful or fair. These are real problems that we come to you for, and they really impact our lives. If you don't listen, and believe, what we are saying... I'm not sure where we're supposed to go from that point. For example, if I come to you and tell you that I am struggling with a certain problem and it's keeping me from XYZ, don't just pass over it, ask more questions and seek to understand. Listening to your patient is respectful and vital to the patient-doctor relationship. There is nothing worse as patient than leaving an appointment and feeling like you weren't heard, acknowledged or respected.
Finally, work WITH your patient. The medical team has doctors, nurses, social workers, and other medical professionals. In your more complicated patients, there might be an enormous amount of individuals that are involved in providing care to your patient. Your patient is at the center of all of this, and is the only person who can inform you about their experiences. Your patient needs to be informed of all of their test results, not only so that they can make treatment choices, but so that they can inform other members of the team. At times, we might need you to connect directly with other team members, in order to coordinate the best possible treatment plan. Also, when considering treatment planning, consult with your patient to see if the treatment plan will work for them. Again, as we are all unique individuals, we enjoy unique lifestyles as well. A treatment plan that doesn't work for your patient for whatever reason, is doomed to fail and essentially useless to your patient. Working together to create a treatment plan, you can help to avoid the pitfall of having the patient not comply with your recommendations.
To tie it up into a neat little bow, I'll call these ideas my "prescription to doctors for providing the best possible patient care", and they form the basis for building a healthy patient-doctor relationship.
Thanks for reading!
Wishing you the best in your future,
Jacob
Congratulations! All of your hard work and long hours has paid off, and now you will be part of the next generation of the medical community. Your role and service is so critical to those of us living with chronic illnesses, without your help, the quality of our lives would take a really big nosedive. We depend on your knowledge and skill that you have cultivated and grown over the years in order to be successful in our lives, just as you depend on us in order to have people to provide services to. Thank you for your commitment to trying to help your patients to achieve their dreams through improving and maintaining their health.
As you leave behind medical school for your future careers in your chosen field, there's a few things that I'd like for you to consider as you set up your practice. As a patient, I've noticed that there are a lot of differences between the ways that doctors interact with their patients, some of which are helpful and some of which ... are not so helpful. I want you to be able to deliver the best possible care to your patients, and I want your patients to feel that they are getting the best possible care from a doctor who truly does care about their patient as a whole.
The first thing I'd like for you to remember in your day-to-day encounters with patients is that we are all unique. You spent a very long time in medical school and in training, learning the "textbook" definitions of many of the illnesses out there. You have amassed this great wealth of knowledge which is invaluable to us as patients. However, not all of us will fit into your neat little textbook definition, and definitely not all of us will be effected the same way. For example, my Crohn's disease wasn't an obvious case. In fact, at first I was diagnosed with Ulcerative Colitis. Even after my colectomy, when my duodenum started showing signs of inflammation, I was told that it acted more like a colon with the whole section being effected rather than having skip lesions, or patches of inflammation. It wasn't until months later when they did a pill-cam study on me did they find that I had these skip lesions, a hallmark of Crohn's Disease.
Next up, don't assume. We've all heard the saying, and it's not something I can repeat here as it's not PG-13. However, a lot of assumptions are made, without even checking in with the patient to see the accuracy of those assumptions. When you make the wrong assumptions, it can seriously impact on the quality of care your patient receives, causing their health to suffer, and impacts the patient-doctor relationship. For example, a lot of chronically ill people live with depression and anxiety. However, not all of your patients will have depression and anxiety as well. Despite my health, which at times really sucks, I am HAPPY. I feel like I have, for the most part, a great life. Yes, I struggle, but every single person on this planet has their own personal struggles. When my healthcare providers use psychological assessment forms to judge off a piece of paper whether I am depressed, there's often no question asking "HOW HAPPY ARE YOU?". Instead you are asked "In the past two weeks, rate how often you have felt sad/or cried/or worried/etc." There's no option to say "I really didn't feel sad". And the paper also doesn't allow you to put your answer into any sort of context that explains your choice. Like "Do you vomit frequently?", well, I have Crohn's, vomiting can be par for the course.
It's also assumed that because I use a wheelchair to improve the quality of my life, that I don't do anything physically active. This is a very dangerous assumption because it immediately closes the door on exploring other reasons why your patient feels they can't do certain things without using medical device assistance. When you make assumptions, you run the risk of not providing the best possible care to your patients.
Listen to your patient. I can't stress this little word 'listen' enough. I come to you with my health story, tell you how my illness has been impacting me, and seek your input from that knowledge base you have built. When you talk over me, interrupt me unnecessarily, or just plain not acknowledge my complaint, it's not respectful or fair. These are real problems that we come to you for, and they really impact our lives. If you don't listen, and believe, what we are saying... I'm not sure where we're supposed to go from that point. For example, if I come to you and tell you that I am struggling with a certain problem and it's keeping me from XYZ, don't just pass over it, ask more questions and seek to understand. Listening to your patient is respectful and vital to the patient-doctor relationship. There is nothing worse as patient than leaving an appointment and feeling like you weren't heard, acknowledged or respected.
Finally, work WITH your patient. The medical team has doctors, nurses, social workers, and other medical professionals. In your more complicated patients, there might be an enormous amount of individuals that are involved in providing care to your patient. Your patient is at the center of all of this, and is the only person who can inform you about their experiences. Your patient needs to be informed of all of their test results, not only so that they can make treatment choices, but so that they can inform other members of the team. At times, we might need you to connect directly with other team members, in order to coordinate the best possible treatment plan. Also, when considering treatment planning, consult with your patient to see if the treatment plan will work for them. Again, as we are all unique individuals, we enjoy unique lifestyles as well. A treatment plan that doesn't work for your patient for whatever reason, is doomed to fail and essentially useless to your patient. Working together to create a treatment plan, you can help to avoid the pitfall of having the patient not comply with your recommendations.
To tie it up into a neat little bow, I'll call these ideas my "prescription to doctors for providing the best possible patient care", and they form the basis for building a healthy patient-doctor relationship.
Thanks for reading!
Wishing you the best in your future,
Jacob
Wednesday, April 25, 2018
Education for all? Well... Sort of.
Some things we take for granted. Take education: many of us kids wish and dream for snow days, or extra p.a. days so that we don't have to go to school. Education in Ontario is a guarantee with educational opportunities available free of charge to all kids living in the province up until high-school graduation. Courses are offered at various levels from basic to advanced and gifted depending upon the student's goals: the workforce, college or university. Although we don't often appreciate the homework that comes with school, it's school that opens the door to the future.
For me, the system is broken. I am one of those kids stuck in a limbo between being too sick to attend school with any sort of regularity, but not sick enough to be admitted to the hospital and entered into their hospital-based school. I attempted to get back to attending highschool this year; it was an epic failure that resulted in being hospitalized for almost 2 months and developing intestinal failure as a result of contracting a simple bug. You see, I take immuno-suppressants to combat my Crohn's Disease. This means that any little thing that comes along, I tend to catch it and it tends to develop into something nasty like pneumonia. Preventing this is not as simple as "wash your hands", which does help, but in a school of thousands, when there is a viral outbreak, there is often no real escape.
As a result of developing the pneumonia and intestinal failure this past year, I was unable to complete the two credits I was working towards. Even though I had 90% in grade 9 gifted science, I lost the credit. It was both devastating and angering. I had put so much work and energy into keeping up, and ended up with nothing to show for it. This caused me to really sit down and think about my options.
To be realistic, I am not going to get much better. I have refractory Crohn's Disease, which is a fancy way of saying "nothing works". In 6 years, I haven't had one single period of remission. My current treatment has helped, but it hasn't been the complete answer to put me into remission. I have run out of available treatment options, so now we're on to symptom management. I will likely always have some degree of immune suppression due to my auto-immune illnesses. So in being realistic, I have to look at the past history when I am trying to plan for what might work for my future. And attending a regular highschool doesn't seem to work well for me. I don't want to keep putting in massive amounts of work only to lose it all because I contracted some simple bug. There had to be another solution.
The only other education option available free of charge to me is through the Student Alternative Learning Program. The only courses available however are at a basic learning level. I went from being at the top of my class in the competitive gifted program to doing basic level work. Everyone keeps telling me how "lucky" I am that I get easier work, that I should be able to just fly through it. For me, it is anything but easy. The only way that I can describe the work I am being given is mind-numbingly boring, and even that doesn't quite get at the real feeling.
When I was in grade 1, I refused to do work. Once we initially learned how to do something, I wanted to move on, I didn't feel the need to practice something that came as natural to me as breathing. So I would sit there and cause problems. My mom was encouraged to send me for psycho-educational testing which revealed that I was highly gifted in my analytic and reasoning skills, and my abstract thinking was off the charts. I was also diagnosed with ADHD and dyslexia. Unfortunately, educational options for children who learn similarly to me, didn't start until grade 4. By then I was too sick for school most of the time, but still being given gifted level material to work on.
And then we have this work. Just to give you an example: I learned how to do a bar graph in kindergarten when we all chose our favourite ice cream flavour and we would chart out the numbers. In my grade 9 work, it described to us step-by-painful-step exactly what we needed to do. It felt condescending. It brought tears to my eyes to have gone from work that was much more demanding to this. The work is also full of spelling errors and outdated information, but that's so low on the list of priorities that need to be changed.
I understand that the system isn't designed for kids like me, and that kids like me are unique and don't come along each day. But we are out there. I also understand that they need to make sure that they have resources available for kids who don't learn concepts as easily, so they have to be able to cover most of the population regardless of ability. Yet to have NO options available that would allow us to get to university without being forced to seek education elsewhere? That just doesn't seem right to me.
I sincerely hope that this can change. This needs to change. We all deserve the opportunity to fulfill our dreams, regardless of our state of health. Yet we can only get there if there are programs in place to allow us to successfully get there. Only when the opportunities and supports are there can education truly be available for us all.
For me, the system is broken. I am one of those kids stuck in a limbo between being too sick to attend school with any sort of regularity, but not sick enough to be admitted to the hospital and entered into their hospital-based school. I attempted to get back to attending highschool this year; it was an epic failure that resulted in being hospitalized for almost 2 months and developing intestinal failure as a result of contracting a simple bug. You see, I take immuno-suppressants to combat my Crohn's Disease. This means that any little thing that comes along, I tend to catch it and it tends to develop into something nasty like pneumonia. Preventing this is not as simple as "wash your hands", which does help, but in a school of thousands, when there is a viral outbreak, there is often no real escape.
As a result of developing the pneumonia and intestinal failure this past year, I was unable to complete the two credits I was working towards. Even though I had 90% in grade 9 gifted science, I lost the credit. It was both devastating and angering. I had put so much work and energy into keeping up, and ended up with nothing to show for it. This caused me to really sit down and think about my options.
To be realistic, I am not going to get much better. I have refractory Crohn's Disease, which is a fancy way of saying "nothing works". In 6 years, I haven't had one single period of remission. My current treatment has helped, but it hasn't been the complete answer to put me into remission. I have run out of available treatment options, so now we're on to symptom management. I will likely always have some degree of immune suppression due to my auto-immune illnesses. So in being realistic, I have to look at the past history when I am trying to plan for what might work for my future. And attending a regular highschool doesn't seem to work well for me. I don't want to keep putting in massive amounts of work only to lose it all because I contracted some simple bug. There had to be another solution.
The only other education option available free of charge to me is through the Student Alternative Learning Program. The only courses available however are at a basic learning level. I went from being at the top of my class in the competitive gifted program to doing basic level work. Everyone keeps telling me how "lucky" I am that I get easier work, that I should be able to just fly through it. For me, it is anything but easy. The only way that I can describe the work I am being given is mind-numbingly boring, and even that doesn't quite get at the real feeling.
When I was in grade 1, I refused to do work. Once we initially learned how to do something, I wanted to move on, I didn't feel the need to practice something that came as natural to me as breathing. So I would sit there and cause problems. My mom was encouraged to send me for psycho-educational testing which revealed that I was highly gifted in my analytic and reasoning skills, and my abstract thinking was off the charts. I was also diagnosed with ADHD and dyslexia. Unfortunately, educational options for children who learn similarly to me, didn't start until grade 4. By then I was too sick for school most of the time, but still being given gifted level material to work on.
And then we have this work. Just to give you an example: I learned how to do a bar graph in kindergarten when we all chose our favourite ice cream flavour and we would chart out the numbers. In my grade 9 work, it described to us step-by-painful-step exactly what we needed to do. It felt condescending. It brought tears to my eyes to have gone from work that was much more demanding to this. The work is also full of spelling errors and outdated information, but that's so low on the list of priorities that need to be changed.
I understand that the system isn't designed for kids like me, and that kids like me are unique and don't come along each day. But we are out there. I also understand that they need to make sure that they have resources available for kids who don't learn concepts as easily, so they have to be able to cover most of the population regardless of ability. Yet to have NO options available that would allow us to get to university without being forced to seek education elsewhere? That just doesn't seem right to me.
I sincerely hope that this can change. This needs to change. We all deserve the opportunity to fulfill our dreams, regardless of our state of health. Yet we can only get there if there are programs in place to allow us to successfully get there. Only when the opportunities and supports are there can education truly be available for us all.
Thursday, March 29, 2018
UPopolis - Social Media for Sick Kids
Can you imagine being a child and living with chronic health problems? How many areas of your daily life do you think are effected? What are some of the biggest challenges you see for kids like me?
I've been living with severe, refractory Crohn's Disease for almost 6 years now, having been diagnosed when I was 8. That first year alone following my diagnosis, I missed just under 80 days at a brand new school due to repeat hospitalizations, complications, and surgeries. As my classmates were all making new friends, it was a real challenge when I wasn't there to have that opportunity. Being "different" from all of my classmates, and the majority of the school I'm sure, only made that feeling of being alone, stronger.
Enter UPopolis. Oh you've never heard of this program? Let me tell you about it! UPopolis is a safe social media site targeted to pre-teens and teens in the health community. Patients are encouraged to create their own page, and then start connecting to others. In addition to the patient pages, patients can play games, and have the opportunity to learn more about health conditions through the health-specific pages. It's a place for building knowledge and support, which is something we all need in order to be able to successfully cope with our illness.
UPopolis to me is important because it's a way to connect. Due to my health, I haven't been able to build a lot of friendships in my home area. As I can no longer go to school, there are even fewer social opportunities. When I first started out at the hospital, I would meet different patients at the common areas, like the play lounges, but we often parted ways after a few days and would only randomly run into each other again. UPopolis gives us that ability to maintain the friendships that we do make while we are in-patients.
Sometimes, the severity of our disease or the type of disease we have, can make us feel pretty alone. For example, when I had my "permanent" feeding tube (GTube) put in, I broke out in a widespread rash that we eventually learned was an allergy to silicone. Silicone reactions are so rare that they're virtually unheard of, yet when I touch anything silicone, I blister. Not a lot of my more healthy friends would be able to understand the experience. Yet in the health community, even if someone hasn't experienced the same situation, they can understand the experience. UPopolis is a great way to be able to share our experiences with people who really do "get it".
I've been living with severe, refractory Crohn's Disease for almost 6 years now, having been diagnosed when I was 8. That first year alone following my diagnosis, I missed just under 80 days at a brand new school due to repeat hospitalizations, complications, and surgeries. As my classmates were all making new friends, it was a real challenge when I wasn't there to have that opportunity. Being "different" from all of my classmates, and the majority of the school I'm sure, only made that feeling of being alone, stronger.
Enter UPopolis. Oh you've never heard of this program? Let me tell you about it! UPopolis is a safe social media site targeted to pre-teens and teens in the health community. Patients are encouraged to create their own page, and then start connecting to others. In addition to the patient pages, patients can play games, and have the opportunity to learn more about health conditions through the health-specific pages. It's a place for building knowledge and support, which is something we all need in order to be able to successfully cope with our illness.
UPopolis to me is important because it's a way to connect. Due to my health, I haven't been able to build a lot of friendships in my home area. As I can no longer go to school, there are even fewer social opportunities. When I first started out at the hospital, I would meet different patients at the common areas, like the play lounges, but we often parted ways after a few days and would only randomly run into each other again. UPopolis gives us that ability to maintain the friendships that we do make while we are in-patients.
Sometimes, the severity of our disease or the type of disease we have, can make us feel pretty alone. For example, when I had my "permanent" feeding tube (GTube) put in, I broke out in a widespread rash that we eventually learned was an allergy to silicone. Silicone reactions are so rare that they're virtually unheard of, yet when I touch anything silicone, I blister. Not a lot of my more healthy friends would be able to understand the experience. Yet in the health community, even if someone hasn't experienced the same situation, they can understand the experience. UPopolis is a great way to be able to share our experiences with people who really do "get it".
UPopolis is a great way to gain knowledge. The first step to coping with any disease is knowledge. When you don't understand what is going on with your body, what the different treatments might be like, etc., it can seem scary and overwhelming. Learning about the condition helps to take those fears away. It also allows you to build a partnership between you and your health team, so that you can actively participate in your healthcare planning. There is so much information on different conditions on UPopolis making it a great place to start to learn more.
Last fall I was asked to be a UPal, a type of mentor for other patients in the UPopolis community. It's such an honor to be asked to be in this role. To have the potential to help someone else who is struggling, is a huge SUPER-POWER! I've had so many health experiences, being involved with so many different specialties at the hospital, that I can now share with others to help them through similar situations. I have the ability to make a difference, and in doing just that, it helps me to feel better. It reminds me that despite my current limitations, I can still change this world of ours for the better.
Friday, June 30, 2017
A Letter About Character
Dear Teachers, Educators and Others in the Educational System;
Thank you. You have taught me a lot over the last 10 years. Yes, you've taught me math, and I've taught you "better" ways of doing that same math. You've taught me science and I've expanded upon your lessons to the university level and beyond. But most importantly, you've taught me about character, and now I'd like to take the chance to talk to you about some of those character traits that have been emphasized so much over the past 10 years, and how I've experienced them on my journey.
You might think of me as one of your "problem students". From grades 4-8 I've missed an insane amount of school. You see, in grade 3, I was diagnosed with severe Crohn's Disease, and would spend a fair amount of the next few years just trying to get that stabilized. While trying to get that figured out, I started having major, tear-inducing pain in my joints leading to a diagnosis of Ehlers-Danlos Syndrome, and potentially arthritis. Simple things that the majority of my classmates do without even hesitating, bring me great pain. Just standing up out of bed in the morning brings enough pain for me to have tears and sometimes scream out. When I walk, I have a tendency for my ankles to pop slightly out of place. Over and over again. Unfortunately, for school, this means that I struggle physically just to be there. I miss a lot of classes, and of course as a teacher you have no idea when I might be coming back so there is no ability to plan for my absences. I can empathize that it must be difficult on the days that I do show up and you need to figure out what to do with me. Remember, it's hard for me too. I leave when you're teaching one unit, and often on my return, we're doing something completely different and I have to find out, once again, where I fit in and how best to get up to speed. We really are in this problem together, so we need to work together to find solutions.
Inclusiveness. I have heard this word so much and I think it's really easy to throw this word around but under the surface it can be hard to actually be inclusive. Inclusiveness is the act of including everyone, to the best of their abilities, regardless of gender, sexual orientation, race, or physical limitations. It's about honoring the fact that every single one of us has something of value to contribute. It's about having policies and programs that represent everyone's needs and allows them to get the best possible education, and to have a positive experience while doing so. Why is Inclusiveness so important? Because we all matter. One of the basic human needs according to Maslow, is the need for belonging. I want to feel that I matter. I want to feel like I am important. The classroom plays a huge role in this because this is where I will spend the majority of my years growing up. This is where I first learn about those differences in a larger setting outside the home. Every day that you have a group of children sitting in front of you, is another day that you have a chance to not only teach inclusiveness but to actually live it. You see that child that is sitting on the sidelines? You can invite him back into the group. You know that someone is really struggling at home? Taking a few seconds to ask if there is anything you can do to make it easier can let a child know you care. You see a child who is physically struggling to hold back tears of pain? Reassure them that you're proud of the effort it takes just to be in class. Find a way of including a child who frequently misses school in group projects, rather than making them do everything on their own. When planning for a class trip, you should give thought to the physical abilities of your students. For example, my grade 8 graduation class trip was to an Outdoor Centre, which I wouldn't have been able to participate in due to accessibility issues. I wasn't well enough to attend anyway, but it would have felt a bit more "inclusive" if they had even considered the known fact that I had physical limitations when they were planning this trip. It hurt a bit. Little things can make a huge difference and make each of us feel included.
Diversity. Each of us students enters the school system bringing with us a whole range of experiences both good and bad. We bring a range of abilities; some of us will be the future Usain Bolts, others of us will do good if we don't trip over our own feet. We all come with different levels of skills at the different subjects and different ways of learning those skills. To value diversity, you need to sometimes think outside the box for new ways of reaching everyone and accepting the different unique talents that come to your class. It's not just the students' skills that are diverse, but also the problems that they bring to the class. Class lessons may benefit from finding a way to work with this diversity. It's a learning opportunity for other classmates to be able to learn how they can combine all of their unique skills together to benefit everyone. Celebrating differences can make people like me, who have quite unique situations, feel valued and included. And we all like to feel that way.
Acceptance. At the most basic we are human, which means that we are all equal. You teach us that we are supposed to accept everyone for what we bring to the table, for who they are and where they are on this wonderful path of life. You teach us that regardless of our differences, we are all part of the same community. Acceptance doesn't mean that you have to like whatever it is you are accepting, instead it means that you accept it as the reality. For almost 3 years, I have vomited daily. I am not trying to be difficult when this happens or when the extreme nausea and the pain take over. This is just my physical reality. I am sick. With a chronic illness. This means that I am going to suddenly stand up and leave class when my best efforts at controlling my symptoms on my own fail. I don't want this to be happening, but this is my reality so I must accept it. Unfortunately, I often felt guilty for disrupting the class, over something that was completely out of my control. Sometimes I don't look sick, which I've often felt has worked against me. It's easy to forget that a person can be seriously struggling personally when there are no visual reminders, and I've found that it frequently leads to a lot of wrong assumptions about my health and abilities. The schools need to accept that they don't often know what the student is personally struggling with, whether it is something at home, something on the playground, or something as serious as their health. No child should feel less of a person because of their personal circumstances.
Respect. You've taught us to wait our turn, to listen to one another's opinion and compromise, to honor our differences and take pride in our and others' accomplishments. Feeling respected is something that we should all expect to feel in our day to day interactions with each other. Respect is more than just a word, it needs to be shown in actions as well as words. Teachers are in a unique situation to be able to model of integrity by not only teaching respect but also embodying it in their everyday interactions. Your words and actions matter. I've had experiences of feeling both respected and disrespected, and feeling disrespected always made everything about the day harder, something I really don't need to have happen since my days are hard enough. Respect is such a simple thing that it should really be the base for all interactions with others.
Lastly, I want to talk about Empathy. I don't want you to feel sorry for me. Instead, I want you to try to put yourself into my shoes and try to understand where I'm coming from each day. Each of us face unique challenges in our lives. I started my grade 4 year at a new school, not knowing anyone, and had just started off my Crohn's journey. In the next 5 years I had 6 major hospitalizations (a month or more), 17 Operating Rooms Trips, and countless medical appointments. This meant that in grade 4 I missed 74 days of school. In grade 5, I missed 76 days. In grade 6, when my daily vomiting started I missed from October onwards. In grades 7 & 8, I only had a handful of days. It impacted my relationships with other kids, and effected every area of my life. I know it's hard to really even imagine being a kid and going through all of that, without having had first-hand experience. Chronic illness is often an uncomfortable subject. It's hard to know what to say to someone who is going through something unimaginable. Just listening and asking questions is all I need to tell me that you are at least trying to understand. You can never go wrong when you come from a place of kindness and compassion. Teaching empathy helps to encourage students to change the world for the benefit of everyone, and is an extremely valuable lesson.
I came to you this small 3 year old child for Junior Kindergarten (my birthday is in December so I'm usually the youngest in the class), and now I leave grade 8, still smaller than my classmates, but with a huge appetite for improving the way this world works. I hope that my reflections on these character traits can help advocate for the needs of other students like me, who don't fit into the typical mold of a student. You as educators have the power to teach and model these important traits, so that others will grow up into responsible young people capable of achieving anything. After all, it was the skills that you taught me that have allowed me to become the young advocate that I am today. Thank you.
Sincerely,
Jacob Ralston
Thank you. You have taught me a lot over the last 10 years. Yes, you've taught me math, and I've taught you "better" ways of doing that same math. You've taught me science and I've expanded upon your lessons to the university level and beyond. But most importantly, you've taught me about character, and now I'd like to take the chance to talk to you about some of those character traits that have been emphasized so much over the past 10 years, and how I've experienced them on my journey.
You might think of me as one of your "problem students". From grades 4-8 I've missed an insane amount of school. You see, in grade 3, I was diagnosed with severe Crohn's Disease, and would spend a fair amount of the next few years just trying to get that stabilized. While trying to get that figured out, I started having major, tear-inducing pain in my joints leading to a diagnosis of Ehlers-Danlos Syndrome, and potentially arthritis. Simple things that the majority of my classmates do without even hesitating, bring me great pain. Just standing up out of bed in the morning brings enough pain for me to have tears and sometimes scream out. When I walk, I have a tendency for my ankles to pop slightly out of place. Over and over again. Unfortunately, for school, this means that I struggle physically just to be there. I miss a lot of classes, and of course as a teacher you have no idea when I might be coming back so there is no ability to plan for my absences. I can empathize that it must be difficult on the days that I do show up and you need to figure out what to do with me. Remember, it's hard for me too. I leave when you're teaching one unit, and often on my return, we're doing something completely different and I have to find out, once again, where I fit in and how best to get up to speed. We really are in this problem together, so we need to work together to find solutions.
Inclusiveness. I have heard this word so much and I think it's really easy to throw this word around but under the surface it can be hard to actually be inclusive. Inclusiveness is the act of including everyone, to the best of their abilities, regardless of gender, sexual orientation, race, or physical limitations. It's about honoring the fact that every single one of us has something of value to contribute. It's about having policies and programs that represent everyone's needs and allows them to get the best possible education, and to have a positive experience while doing so. Why is Inclusiveness so important? Because we all matter. One of the basic human needs according to Maslow, is the need for belonging. I want to feel that I matter. I want to feel like I am important. The classroom plays a huge role in this because this is where I will spend the majority of my years growing up. This is where I first learn about those differences in a larger setting outside the home. Every day that you have a group of children sitting in front of you, is another day that you have a chance to not only teach inclusiveness but to actually live it. You see that child that is sitting on the sidelines? You can invite him back into the group. You know that someone is really struggling at home? Taking a few seconds to ask if there is anything you can do to make it easier can let a child know you care. You see a child who is physically struggling to hold back tears of pain? Reassure them that you're proud of the effort it takes just to be in class. Find a way of including a child who frequently misses school in group projects, rather than making them do everything on their own. When planning for a class trip, you should give thought to the physical abilities of your students. For example, my grade 8 graduation class trip was to an Outdoor Centre, which I wouldn't have been able to participate in due to accessibility issues. I wasn't well enough to attend anyway, but it would have felt a bit more "inclusive" if they had even considered the known fact that I had physical limitations when they were planning this trip. It hurt a bit. Little things can make a huge difference and make each of us feel included.
Diversity. Each of us students enters the school system bringing with us a whole range of experiences both good and bad. We bring a range of abilities; some of us will be the future Usain Bolts, others of us will do good if we don't trip over our own feet. We all come with different levels of skills at the different subjects and different ways of learning those skills. To value diversity, you need to sometimes think outside the box for new ways of reaching everyone and accepting the different unique talents that come to your class. It's not just the students' skills that are diverse, but also the problems that they bring to the class. Class lessons may benefit from finding a way to work with this diversity. It's a learning opportunity for other classmates to be able to learn how they can combine all of their unique skills together to benefit everyone. Celebrating differences can make people like me, who have quite unique situations, feel valued and included. And we all like to feel that way.
Acceptance. At the most basic we are human, which means that we are all equal. You teach us that we are supposed to accept everyone for what we bring to the table, for who they are and where they are on this wonderful path of life. You teach us that regardless of our differences, we are all part of the same community. Acceptance doesn't mean that you have to like whatever it is you are accepting, instead it means that you accept it as the reality. For almost 3 years, I have vomited daily. I am not trying to be difficult when this happens or when the extreme nausea and the pain take over. This is just my physical reality. I am sick. With a chronic illness. This means that I am going to suddenly stand up and leave class when my best efforts at controlling my symptoms on my own fail. I don't want this to be happening, but this is my reality so I must accept it. Unfortunately, I often felt guilty for disrupting the class, over something that was completely out of my control. Sometimes I don't look sick, which I've often felt has worked against me. It's easy to forget that a person can be seriously struggling personally when there are no visual reminders, and I've found that it frequently leads to a lot of wrong assumptions about my health and abilities. The schools need to accept that they don't often know what the student is personally struggling with, whether it is something at home, something on the playground, or something as serious as their health. No child should feel less of a person because of their personal circumstances.
Respect. You've taught us to wait our turn, to listen to one another's opinion and compromise, to honor our differences and take pride in our and others' accomplishments. Feeling respected is something that we should all expect to feel in our day to day interactions with each other. Respect is more than just a word, it needs to be shown in actions as well as words. Teachers are in a unique situation to be able to model of integrity by not only teaching respect but also embodying it in their everyday interactions. Your words and actions matter. I've had experiences of feeling both respected and disrespected, and feeling disrespected always made everything about the day harder, something I really don't need to have happen since my days are hard enough. Respect is such a simple thing that it should really be the base for all interactions with others.
Lastly, I want to talk about Empathy. I don't want you to feel sorry for me. Instead, I want you to try to put yourself into my shoes and try to understand where I'm coming from each day. Each of us face unique challenges in our lives. I started my grade 4 year at a new school, not knowing anyone, and had just started off my Crohn's journey. In the next 5 years I had 6 major hospitalizations (a month or more), 17 Operating Rooms Trips, and countless medical appointments. This meant that in grade 4 I missed 74 days of school. In grade 5, I missed 76 days. In grade 6, when my daily vomiting started I missed from October onwards. In grades 7 & 8, I only had a handful of days. It impacted my relationships with other kids, and effected every area of my life. I know it's hard to really even imagine being a kid and going through all of that, without having had first-hand experience. Chronic illness is often an uncomfortable subject. It's hard to know what to say to someone who is going through something unimaginable. Just listening and asking questions is all I need to tell me that you are at least trying to understand. You can never go wrong when you come from a place of kindness and compassion. Teaching empathy helps to encourage students to change the world for the benefit of everyone, and is an extremely valuable lesson.
I came to you this small 3 year old child for Junior Kindergarten (my birthday is in December so I'm usually the youngest in the class), and now I leave grade 8, still smaller than my classmates, but with a huge appetite for improving the way this world works. I hope that my reflections on these character traits can help advocate for the needs of other students like me, who don't fit into the typical mold of a student. You as educators have the power to teach and model these important traits, so that others will grow up into responsible young people capable of achieving anything. After all, it was the skills that you taught me that have allowed me to become the young advocate that I am today. Thank you.
Sincerely,
Jacob Ralston
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