Author: Upopolis Team

Did you know? March 26 is Epilepsy Awareness Day in Canada – a day to recognize and build awareness for epilepsy, a seizure disorder that affects 1 out of 100 Canadians.

Epilepsy doesn’t discriminate! It also affects youth, like Emma. Emma has been a member of Upopolis for over a year and to help spread awareness about epilepsy, she took over the Upopolis blog! Learn more about epilepsy, her experience from a youth perspective, and tips for how to ween off medication if treatment allows. Check it out below:

“Hello! My name is Emma. I was diagnosed with epilepsy when I was around 5 or 6 years old. Epilepsy is a disorder that causes you to have seizures. A seizure is when lots of cells in the brain send out messages to certain parts of your body at the same time. This can cause muscle spasms, loss of consciousness and abnormal behaviour such as staring for some time, etc. There are a few different types of seizures, so symptoms can vary depending on the type of seizure you have. If you would like to know more about epilepsy and the different types of seizures, visit www.epilepsytoronto.org.

In my case, I have tonic-clonic seizures. “Tonic-Clonic seizures are characterized by a fall and rigidity. It is followed by shallow breathing or temporarily suspended breathing, bluish skin and possible loss of bladder or bowel control. The seizure generally lasts a couple of minutes. There may be some confusion and/or fatigue, followed by a return to full consciousness.” (Epilepsy Toronto) I have had a few seizures over the years until I started taking pills to control them. I am really fortunate to not have severe seizure activity. Some people have multiple seizures every day and medication does not work to control this. I ended up having to switch to a different seizure medication because of some minor side effects that were affecting my emotions. I got angry way easier and my parents said that I wasn’t myself. 

I have had multiple seizures at school as well as at home. And, believe it or not, even on Christmas Day. My first seizure was at a sleep-away camp. I always told people that, “I was baking peanut butter cookies and I was waiting for the fork to put the marks in it. Then, you know what happens.” I don’t remember a lot from after the seizure. The only other thing I remember is waking up for a split second in the ambulance. (And the fact that it was around 8 years ago doesn’t help…)

As of now, I haven’t had a seizure in around 4 ½ years! 5 if I can go until November. I had an EEG a few months ago. An EEG is a way to scan brain waves and in my case, look for seizure activity in my brain. The EEG came back abnormal, but because I haven’t had a seizure in a long time, my Neurologist (Brain doctor) said that I could start weaning off my medication! I was also on a low dosage than I should be and nothing was happening so she thought it was safe.

Weaning is when you slowly start taking less and less of your meds until you hopefully aren’t taking any. I started out taking 1 ½ pill twice a day. I took away a ½ every 2 weeks. Now, I am not taking any! Sometimes I still catch myself going to take my pills! I felt really excited when I got the news. I was so happy that I could finally stop taking my medication. After a bit of time, I started feeling scared. I was nervous that it wouldn’t work and I would have to start taking pills again. But, my family talked to me and helped me feel less nervous. They also told my teacher, and we told the class about it, and what to do if I do end up having one. I am so fortunate for my amazing and supportive community! 

If you have epilepsy, know that you are not alone! Remember to stay strong. Even if you can’t cure your epilepsy, you will be okay. Remember, 1 in 100 people have epilepsy. That sounds small, but if you do the math, that’s around 80 million people worldwide! So, if you ever need to talk, as one out of 80 million, I am here. For those of you on Upopolis, message me! If you’re not, tell a trusted adult you need some more support and they will help connect you with the right people. We’re in this together!“

If you or someone you know has epilepsy, is aged 10-18, and would like to meet other youth with the same diagnosis, e-mail support@upopolis.com to get signed up to our online social platform for youth with medical illnesses!

Have you and your child ever had to wait a long time at the hospital or doctor’s office? Places like the emergency room, doctor’s office, or a clinic may have you wait before you can see a nurse, physician, or someone that will address your child’s medical needs. The long wait can be due to various reasons – sometimes it’s because they have many patients to see; in places like the emergency room, the need to wait may be caused by a medical emergency that someone is having in another room and in this case, all staff members are needed to help provide support.  

Waiting can be tough for any child or youth, especially when they’re trying to cope with medical issues that can be painful, uncomfortable or distressing. Long wait times can cause frustration and increased anxiety and stress, especially if pain is an issue. For this reason, positive distraction is important. It can shift individual focus from negative thoughts and feelings to create a more positive experience overall. By using positive distraction activities during wait times, you can reduce stress, increase your child’s cooperation and offer some fun to help children and youth cope with medical issues, procedures and illness so that their healthcare experience is the best it can be.

If you find yourself having to wait, check out these easy distraction activities to help keep yourself and your child entertained and distracted:  

1. Talk!
   • Waiting rooms present the opportunity to be fully present and engaged with your child. Never underestimate how valuable this time can be to just talk with them. This could be a great opportunity to talk about your child’s medical issue/concern; ask your child how they are feeling, validate their feelings, and clarify misconceptions they may have about their visit; let them know what to expect and offer them a chance to process that information. It’s also an opportunity to connect with your youth; ask them how they are doing, if they have anything on their mind, how school is going, how their friends are doing. You can also share favourite memories or family stories with them. 
2. Play a game
   • Mind games like ispy, would you rather, and two truths and a lie are easy and fun to play and don’t require any materials. A quick search on the internet will offer you some ideas – let your child choose the game!
3. Get up and get moving
   • Long waits can be difficult to sit through. If you and your child are able, try to get up and gently stretch your muscles or go for a short walk. If you are leaving the waiting room, make sure you let a staff member know.  
4. Pull out your phone
   • In a world where we are surrounded by technology, pulling out your phone could feel like defeat. However, use your phone for a bonding and learning opportunity; listen to an audiobook or podcast together; watch a YouTube video or TedTalk; take a virtual tour of a museum. You could also use this time to call a family member or friend together, or send them funny photos. 
5. Grab a pen and paper
   • Using minimal supplies that are probably in the office can also be used to stay entertained. Grab a pen and paper if they are available to play Pictionary or X and Os. You could also write someone a letter.   

Hopefully with these activities in mind, your next waiting room experience can be a little less stressful and a little more manageable. It’s important to continue to model the behaviour you want from your child; stay positive and understanding. The health care team is working as fast as they can, and they appreciate your patience! What an awesome opportunity to connect with your child.

Written by Sophia, an Intern at Upopolis, who is also completing part of her internship in the Emergency Department at McMaster Children’s Hospital.

Self-love is great medicine for our physical, emotional, mental and spiritual health. Before we can practice it to better ourselves, though, we need to understand what it means.

By definition, self-love means “regard for one’s own well-being and happiness”. It is also often referred to as self-compassion; taking care of your own needs, accepting your weaknesses, embracing your strengths, being aware of your emotions, and entirely appreciating yourself. Your own well-being and happiness is the most important which is why, in today’s society, self-love can be seen as selfish and egotistical. Sure it’s true, caring for others is so important, but it definitely shouldn’t come at the cost of your own happiness.

Self-love can be hard to master; it can mean something different for each person because we all take care of ourselves in different ways, feel different emotions, respond to situations individually, and have varying views on what good mental health means to us.

In honour of February (the month of love!) Upopolis is releasing 14 days of self-love resources for youth, parents and professionals. We want to help you learn how to love yourself and to make healthy choices in life so that you can view yourself in the best way possible. Why practice self-love with us? Here are 3 good reasons:

1. Self-love helps to reduce stress. When you love yourself, you are able to recognize when you might need to step back and take a break whether that’s in your career, school, home life or relationship. You are able to recognize when you might be so stressed you need to slow down.
2. Self-love can help you make healthier choices. When you hold yourself to high standards, you’re more likely to make choices that help you grow in a positive way. This could mean eating better, exercising, and getting a good night’s rest.
3. Self-love can increase happiness. When you’re always pointing out your flaws and weaknesses, it’s hard to be happy. When you practice self-love and accept yourself, you’re more likely to have a positive outlook on life.

All the self-love resources curated by Upopolis will be released on our social media accounts everyday starting February 7^th. After that, you’ll be able to access a downloadable PDF version of the resources from our Created for U page to challenge yourself to self-love! Come back to this link to access it: https://www.upopolis.com/created-for-u/

Join us as we begin to love ourselves!

Have you ever heard of GivingTuesday?

It’s a global generosity movement always held the Tuesday after Black Friday and Cyber Monday to encourage communities, organizations and individuals to come together to support their favourite causes.

For this year’s GivingTuesday, we reached out to our youth members to ask them to give us a few reasons as to why someone should choose to support Upopolis during their GivingTuesday act of kindness.

Jenna, a member of Upopolis for over 6 years, said this:

Hi my name is Jenna I’m 17 years old. When I was 11 years old, I was diagnosed with juvenile arthritis. It was really hard at first. I didn’t know a single soul who had JIA let alone another youth who spent so much time at the hospital as I did.

I got weird looks at sleepovers because I had to take so many medications. I had to miss a lot of school due to appointments and countless sick days. Most of my classmates and friends at the time really didn’t understand me and talking to other 6th graders was challenging. I had a tough time comprehending my diagnosis at such a young age it was even harder explaining it to other young people who often times weren’t willing to listen or understand. I felt lost and alone.

My rheumatology team recommended I go to a specific camp so I could meet other youth who had similar struggles to me. This camp was really helpful and I made friendships that’ll last forever. At camp, the counsellors told me about an online platform called Upopolis. They told me it was a site that youth across Canada could connect with other youth whom spend time in hospitals.

I was so overjoyed because after I left camp I had a place I could go to connect with kids with similar challenges to me throughout the year. I made so many friends and was even able to find volunteer opportunities through the Upopolis website. I especially enjoyed that during hospital stays, I had people to talk to who really understood what I was going through and supported me endlessly.

Through my 6 years on Upopolis the platform has grown so much! New friends join all the time and I’m always so excited to meet and talk to new people via Upopolis. I feel safe, and in the early days Upopolis was the only social media app my parents really trusted because they knew it was monitored closely by an awesome team of child life specialists. In the pandemic Upopolis was a staple in my life. I’m grateful for all the lonely days I always had someone to talk to and be with. On Upopolis we all care about each other and it’s a beautiful thing. In my time on Upopolis I’ve recruited many of my local friends who’ve joined and also fallen in love with all the platform has to offer. Upopolis has expanded to offer support to youth who are grieving a loss of a loved one (I have utilized their resources a few times since I lost a lot of close people when I was younger. The Upopolis team has shown compassion and it really helped me through my grief) and they also offer supports to siblings of those who have health problems.

Upopolis has changed my life as well as many other people I know. Being a sick kid is hard and connecting with other sick kids really helps. I’m forever grateful for all my time on the site. If you can this GivingTuesday, please consider donating to Upopolis so they can keep growing and expanding and offering more services to extraordinary youth like me across Canada!

If you’d like to donate to Upopolis, please visit https://secure3.i-doxs.net/kidshealthlinks/OneTime_Add.asp.

Any donation, big or small, is so appreciated. We are eternally grateful for your support in helping us help youth!

Following the death of a person who is significant to you, there may be days that feel especially tough… like first holidays, birthdays, and special events that take place without that person’s physical presence. These days may trigger conflicting emotions or bring up memories of the person who has died that you find difficult. Here are 5 tips to help you navigate these firsts:

1. Think about days coming up on the calendar that you expect to be difficult for you. Write them down and rate how you are feeling about each one. Then plan how you would like to approach these dates and make a list outlining what you would like to do for each one. Doing this will help you feel more in control and can lessen feelings of anticipation/anxiety.  
2. Talk with your family and friends about what you feel you can and can’t do on these days to help manage any expectations.
3. If other family members are also grieving, where possible have a family meeting so everyone has a chance to share feelings and preferences before a special date/event.
4. If you’re unsure about attending a gathering/event, find out more before going so you can feel prepared and there are no surprises.
5. You may wish to continue to feel connected to the person who has died on dates that you would normally spend together. You can do this by continuing special traditions or starting new ones. You may choose to include your loved one in the day in a small personal way or do something they loved to honor them.

Ultimately, it’s okay to allow yourself to feel what you’re feeling and to change things up to meet your needs as “firsts” approach. Planning gives you a chance to think about and carry out what is meaningful to you and those around you as you navigate these new experiences.

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!