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.

Jacob Ralston

Monday, June 12, 2017

Child & Family Centered Care Week at Sick Kids Hospital

Last week I had the incredible opportunity to be a part of a panel discussion on Engaging Patients as part of Child & Family Centered Care Week at Sick Kids Hospital. It was an amazing honor to give a
voice to the other patients in the hospital and their families.

I'm happy to be able to share my speech with the world, hoping that the medical community can take notes about what it means to the patient to be included and take steps to including patients at all levels of healthcare. Without further delay...heeeeere's Jacob (insert drumroll!)

★Hi, Good afternoon! I'm very happy to be here today, not only to share my story, but to be able to represent other child patients and hopefully inspire you to help make an even bigger difference in the lives of others.

My name is Jacob, I'm 13, and I participate on the Children's Council here at Sick Kids. I first started coming here when I was 8 and diagnosed with severe Crohn's Disease.

Giving to others has always been important to me, so when the doctors' best efforts to control my disease didn't work, and I need a colectomy, I asked to donate my colon. You could call this my first really big donation, but I still wanted to do more to help others.

Unfortunately, I experienced a lot of health complications during my last 5 years. I have been to the operating room 16 times. I have spent holidays like Easter, Christmas, birthdays, and summer vacations here. I've often spent weeks here as an in-patient at a time, and sometimes, I have been here at least weekly for appointments. Thankfully my GI team never gave up on me and after a lot of trial and error with everything under the sun, they have finally found a medication that is working well for me right now.

Healthcare is a partnership. At the beginning, I come to you with a medical problem. You, the doctor, listens to me, asks me questions, and prescribes the next steps to getting better. But let's say the medical problem I bring is complex and chronic, like my Crohn's Disease. If I am going to live with this for the rest of my life, or until there is a cure, I need to know something about it. That means that I need you to answer my questions which needs to be done at the child and family's level of understanding.

I once had a doctor who suggested that I didn't need to know as much as I do about my disease. This is a huge problem because the more I know, that more I can participate in making decisions about my own health. I can't take responsibility for my own health without having all the information and developing an understanding about it. I need to be able to bring up new research that may improve my health, as sometimes doctors might not have thought of something in their busy schedule, and that something might just be the key to the right treatment.

But healing is about more than just finding the right treatment, it's also about the support services the hospital offers, that encourages patients to heal and to participate as partners in their care.

Because of my health experiences, I have been to many areas of the hospital, from GI to Dermatology, to the In-Patient wards and many others. And of course you can't forget the fun places like Marnie's Lounge, or the old Starlight Lounge which is now the Samsung Space. I've had a lot of opportunity to compare different areas and to imagine "how would I make this better?"

For example, consider unit 4C, the medical short stay unit where Inflammatory Bowel Disease patients start to receive IV infusions of medications like Remicade. Inflammatory Bowel Disease patients are often prescribed this strong medication when other treatments have failed to work. I can remember when I started these treatments worrying things like "What if this treatment doesn't work?" and "How will I feel afterwards?"

There is a lot of hoping going on too; hoping that this will be the medication that allows you to be out of the hospital; hoping that this will take away the pain; hoping for a return to being a child. These fears I would imagine are shared with a lot of the patients who are coming through those treatment doors.

Now imagine having all those fears as a child and entering a place with very few things to distract you during your 8 hour day. The three large group treatment rooms are very plain rooms, where the only distractions are 2 very old televisions that are out of reach of us patients to control, and about 6-7 wall stickers.

When I compared this to the other areas of the hospital, it was clear that these rooms were in desperate need of an update to make them more child and family friendly. In other words, they needed to encourage healing more. Working with the Foundation, I created "Jacob's Healing Rooms Project" which will see tablets installed at each treatment chair; a bubble tube sensory machine to add color and visual distractions; and light covers to make the room more appealing by covering the harsh lights with pictures of clouds. Using social media, I have just reached $36,000 of my $60,000 goal! I'm really hoping that this will help to uplift the spirits of children and their families coming to Sick Kids for short-stay treatments, and also help the staff by creating a more appealing and enjoyable place to come to work each day, and do the fabulous job that they do for us.

I know first-hand that the right environment can help to encourage healing. When patients work with the hospital to develop services that promote a healing environment, it has a positive impact on everyone's health. Patients who discover things that could be done better, voice their concerns, and work in partnership with the hospital, can help create a healing atmosphere.

I enjoy the opportunity I have at Sick Kids to be able to give a voice to the most important people in this hospital; the patients and their families. These are the people who use the services you offer, so it is important to have their input into what would be even more helpful for the hospital.

But I didn't want to stop there with trying to help improve this hospital, so this year when it was suggested that I apply for Children's Council, I jumped at the chance to be able to make a larger difference.

Truth be told, I come to this hospital so much that when I walk through the halls, I always see somebody I know or who has been involved with my care. Spending those holidays here, the Sick Kids staff has become almost like a family to me, as I'm sure many other patients and their families who spend time here would agree.

The staff play a huge role and impact our personal story, in fact, it becomes impossible to tell our story without them. Each of my bravery beads not only tells the story of what I personally have gone through, but it also tells the story of the staff in the background. For example, my clown beads tell the story of an amazing therapeutic clown, A LeBoo and the incredible way that he uses his gift of finding a way of interacting with each of us on our own personal level. And he seems to never forget a face. My bloodwork beads tell the story of the kind blood lab ladies, who even though I don't like 6:30am bloodwork, always greeted me with a smile and jokes. There isn't a single bead here that doesn't involve a staff member in the background. This is why child and family centered care is so important.

Child and Family Centered Care, where families and patients like me can partner with staff at various areas of the hospital from designing of patient spaces to evolving policies and planning, plays an important role in developing that kind of relationship that I just described. I hope that more patients feel that if they too recognize that something can be made better, that they can approach the hospital with their ideas, and they too can participate in changing the hospital for the better. As the hospital continues to evolve, we as patients and families need to be included and encouraged to provide input and feedback, in order to continue to make this the best hospital to come to. No matter our abilities or the challenges that stand in our way, we are all capable of making a difference in the lives of others. Nothing is impossible when you have a dream. Thank you.★