Author: Upopolis Team

In May 2020, we introduced the U Got This! Challenge, a weeklong virtual activity series to help youth cope with the challenges associated with COVID-19. We’re excited to announce we’re doing it again, starting October 18th! This time, we’re helping youth “embrace control” with a 4-week activity series led by our team. The goal is to help youth find and gain back a sense of control, a feeling often lost during hard times (like during a worldwide pandemic!)

Here’s what our series has to offer:

• 4 activities sent out via e-mail on the Monday of each week beginning October 18th, 2021
• E-mails will contain everything youth need to participate in the activity virtually: a video lesson, handouts, and any other important information!
• Participants will be invited to work on photo projects, art pieces, coping skills and t-shirt designs

A little sneak peek into our weekly themes…

Emotions – ready to test your photography/videography skills! How do you channel your emotions so that they don’t become unhealthy?

Mantras – it’s time to get creative. What’s your life mantra?

Past, present and future – do you love art? Learn to find control in your life while making a masterpiece!

Physical coping – dive into how our bodies physically respond during times of stress, and what you can do to help!

Youth do not have to be part of our Upopolis community to join, the workshop is FREE, and it is facilitated entirely by certified child life specialists who are trained to support children and youth through life’s challenging events.

Do you want to take part, or know a youth who would benefit? E-mail support@upopolis.com to let the team know, “I want in!”

With school just around the corner, you may be wondering how you can support a youth who, in addition to dealing with the ongoing uncertainty of Covid-19, has also experienced the death of someone significant. Whether the plan is to attend school in person or remotely, one thing is clear: youth who are grieving need caring adults in their lives to start the conversation and help plan for a smoother return to the classroom.

Not sure where to start? Below, we highlight various resources designed to help caregivers, educators, and other potential supports connect with youth who are grieving.

• Kidsgrief.ca on the Canadian Virtual Hospice website offers modules created for both parents and educators with guidance on how to talk with children and youth about serious illness, dying and death. Particularly, KidsGrief.ca for educators discusses how to apply strategies to help students cope with Covid-19 related impact, death, and grief.

• Lighthouse has created these short but effective tip sheets that can be used to help prompt discussion:

Returning to school after a death – how you can help provides suggestions on how caregivers can make this transition easier. When possible, caregivers can help by talking to the youth’s teachers and school counsellor, making a communication plan around what information the youth would like to share and how, preparing the youth for other students’ questions or comments, identifying trusted supports in the school setting, rehearsing coping strategies, and importantly, giving the youth permission to have fun again.

Supporting a grieving child or teen at school identifies signs of a grieving student, and ways teachers and school staff can assist. These include educators reaching out to the family before the student returns to school, creating a support plan to help the youth manage triggers and emotionally difficult days, and fostering a grief friendly classroom by providing opportunities to express feelings and emotions. Be sure to share this poster with the educators in your youth’s life: 20 Things grieving students would like teachers to know.

• Social support at school is paramount so involve peers! Your friend is grieving, tips for supporting them created by the Dougy Center gives concrete ideas on how to show up for a friend who is navigating loss. Be sure to share this with the students you work with if you are an educator or alternately, as a caregiver you can encourage the youth who is grieving to share this with friends. 

• Lastly…sometimes it’s hard to know how best to support a youth depending on the individual circumstances. Attend a free online Q&A with child and youth grief expert Andrea Warnick. On the first Tuesday of every month from 1:00-2:00pm ET, you can join in and ask your own questions or listen to and learn from other’s grief experiences. Just register here. Or if you have a question about terminal illness, end-of-life care, loss, or bereavement, you may be interested in checking out Canadian Virtual Hospice’s Ask a Professional. Their team of palliative care experts will provide a detailed, personal response within three working days – and no need to worry, all questions and answers are kept confidential.

With so many available resources at your fingertips, you can be sure that you’re helping the youth in your life start the new school year on the right note. While losing a loved one is never easier, it’s always a little bit easier knowing there’s people around who care.

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:

1. Advocate for yourself and make sure your voice is heard. Make sure you go over your history thoroughly and tell your doctors what works for you and what doesn’t.
2. Ask lots of questions, you have a right to know exactly what is happening. Bring a notepad to write notes or even a friend/family member who can also listen in.
3. Be honest with where you’re at and how your health is affecting your life. Nobody knows your body better than you.
4. Build a relationship with your new care team. It is important for your medical team to know who you truly are and what drives your determination.
5. Let yourself be okay with change. Be open to letting new people in on your health journey whether that be doctors, nurses, respiratory therapists, etc…
6. Talk about the transition before it happens. Outline what you want to see before, during, and after transition to keep yourself accountable.
7. Reach out to your child life specialist in person or through Upopolis as they are equipped to help ease the transition and often have incredible tips.

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.

Definitions

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.

Privacy

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.

Content Planning

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.

Social Media

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 process of receiving your diagnosis can be a long one, and it can lead to a lot of mixed emotions.

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.

• Never underestimate the value of having a group of people who support you and know what you’re going through.

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.

• Invisible disabilities deserve just as much recognition and validation as visible disabilities.

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