Do you know a youth who is soon transitioning from pediatric to adult health care? We were so excited to have Maggie, a past Upopolis user, young adult, and UMentor join us for this month’s blog post on just that! Transitioning into the adult health care world.
Maggie joined Upopolis almost ten years ago, soon after it’s inception, and became an avid member. During her years on Upopolis, she went from being a youth user to a UPal (taking on a more leadership role), and is now a UMentor. A UMentor is a youth turned young adult who has transitioned out of pediatrics and comes online to help our current youth cope with their own transition.
Read her 7 tips for making the transition smooth:
“For those with complex and chronic health conditions, going to appointments at the hospital can become routine. We are fortunate to have tertiary pediatric health care across Canada, but it can be easy to forget how unique the Children’s Hospitals are run until your time in the system comes to a close. Every family dreads the time when the transition between child-centered to adult-oriented health care has to occur, but it doesn’t always have to be a negative experience. Unfortunately, my transition was somewhat abrupt due to the COVID-19 pandemic. Nevertheless, I would like the share some tips and tricks that I have learned along the way:
I hope that these points are helpful to others. While it can be daunting, it is a necessary next step in your medical journey. Keep your head up and make sure your voice is heard when discussing your health.
Show Maggie some love by sharing this post to social!
If you didn’t know already, we know some pretty incredible youth on Upopolis.
Just when you think you’re having a hard day, you hear about the incredible journeys these youth have been through and then you think, “If they can go through challenges like these, then I can get through my day.” The most amazing part? They have been through some really intense experiences and have come out of them stronger and smarter. They are some of the most compassionate, insightful, empathetic and brilliant youth we know.
In honour of National Tell a Story day on April 27th, we invited one youth in particular, Tahlia, to share her story with us about her double lung transplant through the COVID-19 pandemic. We featured her on our social media pages for our #UpopolisUser spotlight, a monthly showcase of the awesome youth on our website, and now, we get to hear the rest of her powerful journey. Read below!
“I was diagnosed with pulmonary hypertension (PH) and 2 ASDs/holes in my heart at the age of 6 turning 7. I was recommended to come to [a city half way across the country] by another family with a kid with PH because there are specialists there that provide better care. My health was doing really well for 9 years, which is impressive for PH as it does go undiagnosed/misdiagnosed as asthma and at that point is difficult to treat.
In 2019 my health took a turn and I was put on a subcutaneous pump 24/7 hoping it would give me some more time. Sadly it didn’t do anything for me. I was a bit disappointed because they told me I’d have more energy to do the things I loved, but it actually took it away because I was told I wasn’t allowed to do them anymore. In September 2019 my PH specialist recommended that we look into a double lung transplant and that I get assessed for transplant. In January 2020 we made a week trip back [across the country] to get assessed for a double lung transplant.
In February 2020 we found out I was eligible for transplant and was told to be ready for May 1st. Due to COVID, though, my transplant was put on hold.
Now was the waiting game for another call for transplant.
We waited until November 13, 2020 and that was the day we got the call! But transplant didn’t happen until November 16. The day I got the call for transplant I was full of mixed emotions because I wasn’t quite prepared. I had nothing packed, I was stressed because I didn’t really know what to expect but then when I found out I was still waiting. It caused more reactions because we thought it might not happen, but it did!
I was in the intensive care unit (ICU) for 2 weeks because they thought I could have possibly caught something, and I almost had to be put back on a ventilator.
After 2 weeks in ICU I was sent to the ward to do physiotherapy every day. I was trying to gain leg strength, but due to having been in the ICU for 2 weeks my legs were not as strong as they would have liked. They sent me to a rehabilitation center for 2 months to strengthen my legs. They got pretty strong really quickly!
Here we are now getting ready to go back home at the beginning of June 2021. Getting the transplant was a miracle. It changed my life forever. I was able to do the things I loved like singing and dancing again. It was a huge step forward because before transplant it was very difficult to do without running out of breath or being in pain. Now I’m able to do all that without suffering and I’m finally able to enjoy it.
On Upopolis I feel like they’re my second family! There’s kids dealing with similar challenges as me! I really enjoy making new friends on Upopolis and all the game nights. “
Editor’s note: Identifying information about where Tahlia’s healthcare took place has been removed for confidentiality/privacy reasons.
Pulmonary hypertension: increased blood pressure in the lungs
ASD (atrial septal defect): a hole in the wall between two areas of the heart
Subcutaneous pump 24/7: a small machine that gives the body medicine all day and night to help with pulmonary hypertension and ASD
Double lung transplant: doctors remove both lungs, one at a time while the body is asleep, and puts new ones in. This usually takes between 6 – 8 hours.
Intensive care unit: an area of the hospital where patients receive healthcare from a nurse that is dedicated to them. In other areas, nurses can have 2 – 4 patients.
Kids’ Health Links Foundation employed child life specialists online long before the COVID-19 pandemic was a thing. 12 months ago, if you didn’t know about Upopolis you probably would have wondered what there is for a child life specialist to do virtually. How do you support children and youth through a computer?
Whether you’ve started to provide support to patients and families online or not, you’ve certainly been hearing more and more about it. Through webinars, from colleagues, on social media. Meeting patients over video chats and learning how to prepare, educate, and empower children and youth through a computer… it’s hard work! And we’re all learning to navigate it together.
Upopolis though, it’s different. 90% of the time our small team of child life specialists are providing support to youth aged 10 – 18 years through a keyboard and computer, no video chats included. We’re typing, posting, creating, planning… mostly providing therapeutic content without ever seeing a youth in real time!
If you’re a veteran child life specialist, you understand how transferable child life skills are. But if you’re new to the field and are learning how far your child life skills can expand, we’ll you’ve come to the right place for an inside scoop.
On Upopolis, the number one priority is the safety of the youth users. Our National Program Manager works closely with key players to make sure the website is always up to date and technology bugs are identified and fixed quickly. Along with our Program Coordinator and social media lead, our team is always making sure consents across the website are up to date and user-friendly. If a media consent form needs to be sent to a family to approve a photo being posted online, the consent needs to be easy to read and understand. The privacy of children and youth is so important, and child life specialists have a keen eye for that.
This goes without saying, content across all of Upopolis (in our spaces, on our social platforms, for virtual meet ups) is planned with a child life eye. Our Program Coordinator is constantly updating, reviewing and adding content to our spaces for youth to access if they’re in need of diagnosis explanations or procedural preparation; she is also always planning ways to engage our youth users to help empower them, encourage socialization, and teach them lifelong skills. As our youth post online, our team is there to answer them. If a youth posts about being nervous for an upcoming appointment, one of our child life specialists will respond.
Our National Program Manager develops resources to help our users with their coping skills, to offer to parents and child life specialists (especially via our podcast), and is always reviewing branding to make sure our content is easy to understand. And of course, the infographics we post on our social platforms, the Tik Toks we create, and the tips we share, all have the goal to help youth cope with their diagnoses or hospitalization and help parents help their children navigate illness.
Child life on social media certainly isn’t a new thing, but there is so much to think about in order for it to be appropriate and successful. Our social lead is always online reviewing comments and posts, responding back to messages from our youth, and helping the community navigate our site. There is a need for customer service, and for child life specialists, it’s innate. Not to mention, privacy is always top of mind, as is creating content that will educate our youth and followers, and empower them to be the best version of themselves, no matter the circumstance.
If you want to learn more about our website, follow and stay tuned to our social media accounts to learn about our upcoming Tour Q&As with our National Program Manager!
Over the last couple weeks, our LGBTQ2S+ & U group on Upopolis has been talking about gender pronouns. Gender pronouns are words someone would like others to use when talking about or referring to them. The most common pronouns used are “he, him, his” and “she, her, hers”. When someone is transgender or gender nonconforming, they may prefer to use different pronouns, such as “they, them, theirs”.
If you’re cisgender, which means your gender identity matches the sex you were assigned at birth (i.e. Born a female and gender identity is female), you may have not given much thought to pronouns before. The pronouns a person uses are an important part of their identity. For people who are transgender, the shift in pronouns can be an important part of their transition. For example, Canadian actor Elliot Page recently came out as trans and noted that he uses the pronouns he/they.
So, how can you be supportive? You might make a point of telling others what pronouns you use when you meet new people and asking if they’re comfortable sharing theirs. You might state your own gender pronouns in your email sign-off. These are great ways to communicate that you are supportive of all identities and an ally to the LGBTQ2S+ community!
Once someone tells you their gender pronouns, try your best to remember what they are and use them appropriately. Of course, we’re all human and can make mistakes sometimes. Consider these tips for if you accidentally misgender someone:
1. If this happens during conversation with someone, calmly apologize, correct yourself, and continue speaking.
Do this even if the person you misgendered isn’t around. This will help you to remember to use the right pronouns in the future, to help others to remember, and to communicate your allyship to the LGBTQ2S+ community. There is no need to excessively apologize, justify why you made the mistake, or defend yourself. Doing this only centers your own needs and feelings over the person who has been misgendered.
2. Commit to doing better.
On your own time, reflect on why you made that mistake and think about how you can prevent yourself from making it again. This may even involve practicing using pronouns you are less familiar with so you can be more confident when using them in conversation.
The general consensus is that if you misgender someone, it should never be the responsibility of the person you misgendered to make you feel better about it or to help you do better at respecting their identity. Language can make such a huge impact on mental health and self-esteem, so we should all do what we can to communicate our respect to others with the way we speak, and the words we choose to use!
Last week, I had the opportunity to do a Upopolis podcast takeover and got an inside look into the world of two incredible youth with Crohn’s, Meghan and Rebecca. These youth spoke so candidly about their experience living with this disease, discussing what it was like to be diagnosed, how they cope with treatments, and advice they’d give to other youth or adults.
November is Crohn’s and Colitis Awareness Month. Crohn’s and Colitis are the two main forms of inflammatory bowel disease, which is a chronic and lifelong disease that causes inflammation of the gastrointestinal (GI) tract. These conditions can cause painful and disruptive symptoms that can impact all areas of a person’s life. Throughout November, I spent a considerable amount of time researching these conditions to post information and resources on Upopolis, but truthfully, nothing could have educated me the way these two youth did!
As an intern, I’m only just beginning my future career as a child life specialist. It was incredibly valuable to listen to Meghan and Rebecca’s perspectives. Here’s what I learned most from our time together:
The youth talked about the emotional toll they felt going from being a healthy kid to being sick all the time. They mentioned how scary this time was for them both, and how they felt the need to hide it from others.
Meghan and Rebecca discussed how they relied on family, friends, and their healthcare team to advocate for them and to help them get through tough times. They noted that when they were connected to other youth with Crohn’s (many of which they met at a camp for children and youth with chronic illnesses), they went from feeling alone to feeling supported. They made lifelong friendships with people who truly understood how they felt.
Both youth discussed the same theme throughout the podcast: they felt because Crohn’s is invisible, it receives less recognition than disabilities or illnesses that you can see. The youth talk about feeling misunderstood, frustrated, and tired of pretending that they’re okay.
I think a crucial first step to increasing visibility for Crohn’s and other invisible illnesses is raising awareness. This discussion with Meghan and Rebecca was so informative, and I learned so much from listening to their experiences; I can bet you will, too!
Stay tuned to our social channels to find out when this podcast goes live! To listen to our library of other available podcasts for parents and professionals, check out this link: https://upopolis.buzzsprout.com/1275395
Written by Amiah Keresturi, Upopolis Intern and candidate of the Masters in Child Life & Pediatric Psychosocial Care from McMaster University
It’s that time a year again, the youth are heading back to school. For youth experiencing critical illness or living with chronic illness back to school preparation does not just happen in September. Youth must often prepare for school re-entry post treatment or following an extended absence. Along with the typical back to school preparation which includes clothing and school supply shopping, these youth must also prepare themselves for the questions and reactions that they may get from teachers and peers. As well as for treatments, medications or side effects that will be done or experienced at school.
Brainstorm questions that your child might get asked. Sit down with your child and think about all the questions that they anticipate a teacher or peer asking them. You may want to invite a friend or two who spends lots of time with your child to help add questions to the list. Then, spend some time coming up with answers to the questions that your child is comfortable sharing. There maybe questions that are “off limits” and that’s okay. Be sure that your child knows that they can opt not to answer every question and that they have a response to let people know that this is not something they are willing or ready to discuss.
This is a conversation worth having with your child and the school. Find out what the options are for sharing and education peers and teachers about your child’s diagnosis, treatment, and side effects. A little knowledge can go a long way to help people understand and be comfortable with unknown situations. Your child may want to address their teachers and peers immediately with a class Q&A or a presentation, maybe they would like you or a member of their health care team to be there for support. Give your child the options and let them decide how they are comfortable moving forward; be sure they know what platforms and support are available to them. To ensure you cover everyone questions, you may want to set up a Q&A box before the presentation or return to school date.
Be sure that there is a well communicated plan for treatments that must happen during school times. Your child and their teachers should be a part of developing the plan to make sure that it gets carried through and that it works for everyone involved. For example, if your child is going to be late for every English class because they must stop at the office for medication, be sure the English teacher is aware. This will keep them from wondering where their student is, and it will keep them from drawing attention to your child as they slip back into class. Have a plan for the unplanned. Yes, if you know that side effects might occur, be sure there is a plan for when they do. Communicate this plan with the teachers too. For example, if your child gets nauseous. Have a paper with a symbol in the poach of your child’s binder or backpack. If they need to leave the class quickly, they can place this paper on their desk. Teachers will then know what is going on, can put in place the follow up actions, and will not draw unwanted attention to your child.
Having these conversations will help your youth get their best start to the school year or upon their return following an extended absence.
You might be wondering how you got to this point. Your little one, well not so little anymore, is off to summer camp! Your knee jerk reaction is to want to keep them safe, which often means having them within eyesight, ear shot or at least only an “arm’s length” away.
Of course, when they’re home you can watch over them, you know their plans and you can check in with them at any time. But now they’re heading off to camp alone, and wait, what? They’re going to take away their phones or ask them to leave them at home?
These are the thoughts that cross most parent’s minds when they consider sending their teens off to camp. Add a chronic illness to the equation and it quickly puts us in “mama and papa” bear mode.
As a team of child life specialists, our advice is to stop and do a reality check. Summer camp has the potential to help a chronically ill teen build confidence, become more independent and enhance their coping skills while giving them a chance to still be a kid! It also gives them access to a new community of peers, take on new responsibilities, and step out of their comfort zone to try new things.
If this is your reaction as a parent, your youth is probably having a reaction of their own. They’ll need you to believe in and encourage them when you’re sending them off to camp. When you believe in them it helps them become more open-minded to believing in themselves.
Here are our 3 tips to support youth on their way to summer camp
Talk to them about what they can expect at camp. Check out the camp’s website to see the cabins, activities, layout, and pictures from past seasons. This helps youth regain a sense of calm, because they will know what to anticipate when they arrive.
Keep camp related talk positive. This means keeping your own emotions and internal conversations in check if you must. Avoid placing your fear on them by saying phrases like “a week is long; do you think you could manage being away that long” or “I hope you don’t get homesick.” Remember they might also listen in on conversations you’re having with friends and family so be sure to stay positive even when you’re on the phone. You can put a positive spin on your conversations with them and others and build them up with phrases like: “I can’t wait to hear about all the fun you’ll have” and “I hear at camp they have____, you will love that.”
Know the camp’s policies and trust in them. The staff are experienced, they run camp programs all the time, and they’ve learned how to help set your camper up for success. This might include a ‘no cell phone’ policy. Phones distract youth and can stop them from living in the moment. They can also make it difficult to keep them on task or on a schedule. Encourage your child to gain independence and learn new skills while they’re away from home. Having their phone is a constant reminder that they aren’t at home which can actually enable homesickness. Find a communication solution that everyone is comfortable with. Perhaps this means encouraging letter writing, or leaving a handwritten note with the staff. If they like to listen to music, perhaps you can set them up with an alternative device to use. Check in with the camp to learn about their policies and find solutions.
We hope these tips give you a bit of confidence when sending your baby off for their big adventure. They’ll be back in your arms with incredible experiences to share in no time. If they’re looking for a way to stay in touch with their new friends at camp, Upopolis, our private and safe social network for chronically ill youth is a great place for them to connect. Contact us to learn more.
Every week we do a post for youth on Upopolis called “Feel Good Friday”. While doing research I saw a graphic that captured my attention about the ratio of youth that have positive mental health diagnosis versus those who have mental health. That’s why it’s so important that programs, resources, and professionals are available to support youth and their families as they overcome mental health challenges.
Chronically ill youth face a number of mental health challenges including overcoming the social isolation that often accompanies chronic illness, hospitalization, and activity restrictions. On Upopolis, youth have access to Certified Child Life Specialists who are there to answer questions and help youth cope with their medical diagnoses. Plus, they have access to a community of peers who are experiencing adolescence and with similar experiences and challenges.
What are some tips to help U support your youth and their mental health?
Knowing they have somewhere to go to get help can help youth feel that they are not alone. Upopolis offers a safe and reliable space for peer support, reliable medical information, and resources to help them cope with stressful life events. It’s a community that youth can access when they need it. It allows youth to maintain their independence and you know that it is a positive environment, free of cyberbullying, ads and misinformation because it is monitored.
Having the opportunity to communicate with others who have the same diagnosis can help youth understand that there are others out there who may be experiencing the same struggles. Upopolis offers youth a community, a support system, and access to other youth who they can build trusting relationships with.
Youth also have access to a team of Certified Child Life Specialists who are available if they have questions about medical tests, procedures, and coping skills. Ensuring youth have positive role models who understand what they’re going through can help create a healthy environment to cope with mental health struggles, without doing it alone.
Finding reliable information can help empower youth to regain their independence and have control over their diagnosis. There’s a great
resource available from SickKids Hospital that’s all about mental health.
Looking for more information about joining Upopolis?