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Youth Living with Crohn’s: A Podcast Takeover by our Intern

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

Halloween Happenings: How to explain (and celebrate) this year’s new traditions!

We know, Halloween 2020 is going to be very different this year. We could not have imagined back in March that we would still be faced with a pandemic almost 8 months later! But here we are, trying to flatten the COVID-19 curve while also trying to normalize the world for our children. It’s been a long year, but you’ve come this far! Congratulate yourself.

We don’t know how long this new normal will last, but we do know how important it is to continue to celebrate holidays and family traditions even if it means doing things different than last year. Always remember, children are resilient. You can, however, help them cope better by giving them simple and honest information about why things will be different this year.

You can help your children cope with changes associated with Halloween by following a few easy suggestions:

  1. Explain, in simple terms, why normal Halloween activities are unsafe right now. If you haven’t done so already, you may have to start with an explanation of COVID-19. Click this link for more information on how to do this: https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/kids-covid-19/art-20482508
  2. Validate their feelings about cancelled/changed activities. It is normal for your children to be disappointed/frustrated/sad about not being able to trick-or-treat, go to costume parties, or celebrate with friends.
  3. Offer new suggestions for possible activities, and involve them in choosing how they will celebrate. This allows them to feel a sense of control over something that they don’t have much control over.

So, how do you celebrate Halloween if you can’t do traditional trick-or-treating (or whatever your Halloween heart may desire)? The Centers for Disease Control and Prevention (CDC) released guidelines around Halloween activities as many traditional Halloween activities can be high-risk for spreading viruses. With the help of the CDC, input from child life specialists, and youth users on Upopolis, we have compiled a list of alternative Halloween activities so you can continue to make family memories!

Lower risk activities:

  • Carving or decorating pumpkins with members of your household
  • Carving or decorating pumpkins outside, at a safe distance, with friends or neighbours
  • Decorating your house, apartment or living space
  • Doing a Halloween scavenger hunt either inside, or outside at a safe distance from others’ homes
  • Having a Halloween movie night with treats
  • Having a “Candy Hunt”, around your house, living space or yard; hide the treats and have your children search for them!
  • Having a virtual Halloween contest with friends and family
  • Baking then decorating Halloween themed cookies

Moderate risk activities:

  • Visiting pumpkin patches or orchards where people use hand sanitizer before touching pumpkins or picking apples, wearing masks is encouraged or enforced, and people are able to maintain social distancing
  • Participating in one-way trick-or-treating where individually wrapped goodie bags are lined up for families to grab and go while continuing to social distance
  • Meeting with friends or neighbours, outside, to show off each other’s costumes at a safe distance, while wearing cloth or medical grade masks

How will you be celebrating Halloween this year? Your answer may be different than last year, but if spending time with loved ones is already part of the plan, you’re ahead of the game.

Happy Halloween!

4 Tips for Coping with the Potential Return of COVID-19 Restrictions

The third episode of our podcast, Upopolis: The Podcast, welcomed three child life specialists who also happen to be parents. Their experiences during the COVID-19 pandemic were all different, but they all parented with a unique lens: that of a child life specialist, whose role it is to help children cope with stressful life events.

In this latest episode, host and certified child life specialist, Krista Naugler, brought up the perhaps expected future of our community: the return of COVID-19 restrictions. As case numbers increase around the world, the possibility of returning to the “quarantine” life we dealt with in the Spring may be inevitable.

These working professionals shared the trials and tribulations of parenting during a world pandemic and how their behaviours and mindset were affected. Check out their takeaway tips from what they learned from the first time around so you can be prepared for the potential return of restrictions:

Tip #1: Vet your resources

Your children may be hearing so much information from different sources – their teachers, friends, family, or the news. Make sure you know where their information is coming from and if it’s factual. An explanation of a swab to test for COVID-19 may be explained very inaccurately by someone online than it would be from a hospital resource. “Check and vet” to keep your children in the know.

Tip #2: Be your child’s go-to for tough topics

Our children know more than they lead on. Although they may not always be open to talking about it, let them know that it’s OK to have tough conversations and that you are always here to support them and answer questions. If they ask questions, be honest with your explanations while continuing to reassure them that they are safe.

Tip #3: Practice gratitude

Some days will be really tough, and that’s OK. Take time at the end of each day to talk with your children about three really great things that happened. Emphasize their strengths, and pick out the small positives.

Tip #4: Always remember, you know your child best

Parenting is hard, especially during a world pandemic. This time has encouraged us to reexamine our expectations as a parent. Remember, you are doing what is best for your child. You know them best. Just because you might feel like you’re failing, doesn’t mean you’re not doing an awesome job. We’re all going to feel guilty, but every day is a new day and you are doing the best you can.

Check out Upopolis: The Podcast on Apple Podcasts or Spotify Podcasts, or by clicking this link: https://www.upopolis.com/en/resources/#podcasten

Supporting Your Child as They Return to School Post COVID-19 Lockdown

Can you believe its been almost 6 months since your children stepped foot inside a classroom? Us either. What a half year it has been!

For some of us it was a time to relax and embrace the little joys in life. The COVID-19 pandemic, and subsequent lock down, forced us to slow down. It reminded us what is so valued – family and relationships.

For others, it was a challenge to simply get through the day. Many of us continued to go into work, putting ourselves and our loved ones at risk. Relationships were strained as partners worked overtime to meet their employer’s new demand, and on the other end of the spectrum, so many people lost jobs and endured intense financial stress. All the while, our children were at home from school; learning to learn online and requiring either 24/7 supervision or constant parenting in order to make the most of their time off school.

Congratulations for making it through, no matter what your situation brought to you.

And now it is almost September. The start of a new school year, fresh beginnings, and a jump into new routines. This time, with the stress of a world pandemic still on our shoulders. It’s only normal for you, and your child, to be worried about returning to school.

Here are some tips from our child life specialists on how to support your child during their return to school after a lockdown.

  1. Talk to your child about how they are feeling about going back to school. This can be an open-ended question as simple as, “School will be different this year. How are you feeling about going back?” It is normal for your child to be excited, scared, worried or happy at different times throughout their return, or all at once. It’s important to validate what they are feeling (“I totally understand why you’re feeling that way”) and normalize it (“other kids/teens are probably feeling the same” or “I am feeling a worried about the new school year, too!”). Offer your support for when they feel like talking and continue to have discussions about their feelings throughout the transition.
  2. Talk to your child about what their new routine and school day may look like so they have as much information as possible. The more children know, the less they imagine, which helps with decreasing any stress or anxiety about situations. Talk to your child about what the timing of their day may look like and any changes in their classroom (ie. the layout, class sizes, playing with friends, recess). If you don’t know these answers, try to get in touch with your school or child’s teacher to ask questions.
  3. Reassure them about safety. For months we have been told to stay at home, wash our hands, and to not come into close contact with anyone. Now, children and youth are being told to go back to school in classrooms with dozens of other people. This can be confusing for them. Continue to reassure them that the precautions schools have put in place are safe. Provide them with tips on how they can be safe themselves, such as washing hands and wearing masks.
  4. Help to prepare them for masking. In many cities, children and youth will be required to wear masks all day while at school. Help to get them ready for this by: allowing them to decide what colours/styles of mask they wear, “practicing” wearing the mask during the day, teaching them how to properly put it on and take it off, as well as good hand hygiene. Don’t’ forget, masking all day isn’t normal for them so continue to validate how they may be feeling about it.
  5. Be patient with your child and yourself. Your child hasn’t had a set routine for many months now. They’ve likely been going to bed and waking up later, having meals at all hours of the day, and enjoying more freedom. Although this is totally normal, they may have a difficult time starting a new routine. Be patient with them and understand they may experience mixed emotions, as will you. It is normal to feel overwhelmed, frustrated, or annoyed. Your children will need some time to settle into a normal routine, so don’t put pressure on yourself to have things perfect right from the start.
  6. Seek support when you need it. You are not alone in this new transition. Reach out to friends and other parents to help validate what you are feeling. If your child is having trouble returning to school, reach out to their school to work with your child’s teachers on how to best support them.

Remember, our lives were turned upside down over the past 6 months. We couldn’t prepare ourselves for a world pandemic, but you are doing the best you can and you are not alone. We are all humans and will continue to adjust to new situations and experiences over the next many months with many emotions. Be patient with yourself and your family. You’ve got this!

If you’d like to gain more support on helping your child to return to school, e-mail a child life specialist at support@upopolis.com.

6 Ways to Help Your Child Build Resiliency for Times of Uncertainty

Resiliency is the ability to bounce back after difficult times. It is important to help your child learn how to build their resiliency skills for times that they may need it. As we have learned this year the world can change quickly and the way that we deal with adversity and stress is an important skill. Here are six ways that you can help your child build resiliency for the difficult times that they might face.

1. HELP THEM LEARN HOW TO MANAGE STRESS HELP

Everyone will deal with stress but how they manage those feelings will help them with their resiliency. Stress may even be helpful if their mindset is to learn from tough things. A safe outlet for their energy is important for dealing with stress. An important way to help your child learn how to manage stress, or eliminate stress is to make time for play. Make sure that your child has an outlet for their energy and a way for them to be creative. The play might be hanging out with friends, or taking part in a sport, or just free play at home.

2.TEACH THEM TO PRACTICE PROBLEM SOLVING

You have been teaching your child how to solve problems from the moment that they were born. They learned that if they were hungry, they would cry, and you would feed them. One of the first skills that children need to learn to for solving problems is identifying and then naming their feelings. When your child is mad, sad, frustrated, hungry or frustrated name those feelings so that they can make a relation from the way their body is feeling to the name of that feeling. This will help them in identifying which solution will make them feel better.

3. SHOW THEM HOW TO DEVELOP POSITIVE ATTITUDES

When something tough happens, it can be helpful if you reframe the experience in a positive way. For example, if they had to go to the hospital and get blood work, and they cried during, afterwards you can explain to them the things that they did well during the procedure. They may have cried, but they were also able to hold their body still, acknowledge those positive things and this will help them create a positive mindset, instead on just focusing on the things that went wrong or the negative things and help them build their resiliency.

4. SUPPORT THEM IN FOSTERING FRIENDSHIPS

Peers are very important in tough times even for children. Friends can bring out the best qualities in someone, help them sort out their feelings or help them forget about the tough feelings. Help your child create new friendships in showing them how to talk to new people or involving them in recreational groups. Also give your children time to hangout with their friends. Playdates and time after school and on weekends is important for your child to build and maintain relationships with peers. Make sure you make time for them to have some time with friends during the week so they can release their stress, build resiliency and most important have fun!

5. HELP THEM BUILD A COMMUNITY OF SUPPORTIVE ADULTS

Support your child in making friendships and stay connected with supportive adults in their life. These adults will help in the guidance of healthy choices. Supportive adults may be relatives, neighbours, teachers, coaches or leaders. The phrase “it takes a village to raise a child” is true. These adults will be trusted people that will help support your child. They will be their sounding wall and cheerleader along with you so help your child build this community of supporting adults. You can do this by talking about those adults in a positive way and letting them know that they are safe people who care about them and are there to support them too.

6. WORK WITH THEM TO BUILD SAFE SPACES

Safe spaces are places that your child can come to where they feel comfortable. This place might be their home, or their bedroom. It is a place where they can rest and recharge. Ideally, they will have many safe spaces in their life. Teachers work hard to make classrooms safe spaces for their students by making them cozy, bright, clean and have items that spark creativity. Work with your child to create spaces that will be a retreat for them when times are tough.

Acknowledging the Complex Grief Associated with COVID-19

Over the past few months we have experienced more loss than most people have in their lives and this is especially true for our younger population. First, we lost our work, next we lost school, then we lost the ability to see our friends and extended families, and then we lost our routines and sense of safety. We may have even lost sight of how to navigate this new COVID-19 world. Well, what most news sources and social media articles are failing to mention is that we are all experiencing complex grief associated with the pandemic.

Grief is an emotion someone feels after the loss of someone or something. Often times grief is associated with the loss of an important person in one’s life, but people can grieve the loss of something too.

Here are some of the losses and grief that you and your child might be experiencing right now and some ways to help cope with these feelings.  

NON-DEATH AND SECONDARY LOSSES

Non-death loss is the loss of something in one’s life and this can cause someone to grieve. Non-death losses are all of the things that changed after the pandemic hit. The loss of routines, going to school, seeing friends and family, and so much more.

Secondary losses are the other losses that come with losing a loved one, or a major loss in one’s life. Control is one of the major secondary losses that is being experienced right now along with relationships and friendships with colleagues, classmates and teammates, and routines, celebrations and events.

A way to ease the pain is to acknowledge these losses and brainstorm ways to help bring some of these things back. Schools are now having online sessions, and people have been very creative in coming up with ways to keep connections with family and friends. For example, doing an activity with a grandparent over a video chat, such as baking or reading a book together.

ANTICIPATORY GRIEF

Anticipatory grief is the feeling that occurs before an impending loss. This may feeling like being on edge, finding yourself or your child angry at things that are out of control, or always thinking about the worst-case scenario. Anticipatory grief may also cause exhaustion, withdrawal, or avoidance.

With the unprecedented nature of COVID-19, things are forever changing month to month, week to week, day to day and even hour to hour. Once we have had a chance to wrap our heads around the changes, things seem to change again and now we are in a state of always anticipating the next big change.

Some things that you can do to help with this type of grief is to establish routines. Routines help take out the stress of wondering what the next big change is and create some stability in the “new normal.”

AMBIGUOUS LOSS

Ambiguous loss is a loss that occurs without closure or a clear understanding of what happened. This coronavirus seemed to change life as we knew it so quickly. On March 11, 2020 Canada declared a pandemic and then in the next few days schools across Canada were closed without even a chance for good-byes. There was little time to understand and process what was happening to Canada and the world. A lot of things were lost in the first few weeks of this pandemic, creating many ambiguous losses.

Helping your child learn about COVID-19 and all of the new terminology that is being used may help them have a better understanding of how their world has changed and may create a sense of normalization. For most people the term social-distancing is new, as well helping your child understand that the coronavirus, novel coronavirus and COVID-19 are all terms that are being used interchangeably to describe the virus that is affecting the world right now. 

We are all learning together during this time and as you can see everyone is going through a lot. As restrictions begin to ease up in some areas, other things may take a little longer to return to as it once was, so it’s important to be kind to ourselves and others as everyone deals with grief and loss differently.  It’s okay to make mistakes, have do-overs and acknowledge the complex grief that you and your child have experienced.

UGotThis! A COVID-19 Workshop for Teens

Wow, what a whirlwind couple of months it’s been for everyone! COVID-19 has brought us a lot of change. Our routines are different, we haven’t seen close family members for almost two months, some of us are working from home, our favourite stores and restaurants are closed, going to the grocery store is a planned adventure… the list goes on!

For kids and teens, a change in routine is especially hard.

During challenging experiences, children and youth need is a listening ear, the acknowledgment that what they’re feeling is normal, and some strategies to help them cope with change. We are here to help!

Upopolis is hosting UGotThis! A five-day workshop for youth aged 10 – 18 years old, in response to COVID-19 and self-isolation. The workshop offers youth exercises to explore their thoughts and feelings surrounding the pandemic and isolation, tips to help plan their days, support in developing positive coping strategies, encouragement on setting personal goals, and live support chats to connect with child life specialists and other youth participants. The skills youth learn during the workshop can be transferred to the remainder of this pandemic, and can be used to help them cope with any potentially challenging events they are faced with in their future lives.

Your child does 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. In order for children and youth to come out of this experience positively, they need to be given the tools to be resilient.

Check out a sample of one of our lessons from Krista, a Upopolis child life specialist, at this link:

https://zoom.us/rec/play/u8V7dL3-rjw3TICQtwSDVqd_W9TsK_is1iAYqfJbzE62WnIHNVLzM-ETYrTQrRVoB4faHgS50cSvSo9G?continueMode=true

Do you want to sign up your child or know a youth who needs some support during the pandemic? E-mail support@upopolis.com to get them started!  

The ABC’s of Grief

Grief is such a tricky thing, because everyone grieves differently, and each loss can be grieved differently. The loss of a loved one is hard for even the most experienced adult, and there is no exception for a young person. The way someone grieves can be based on previous experiences in life and the developmental stage of the person going through the loss.

Here are three ways that you can support the young person in your life through grief.

Allow your teen or child to grieve.

  • Help them process their feelings, in a supportive way. Try just listening to them and acknowledging their thoughts and feelings.
  • Children grieve in “puddles” meaning that they tend to be sad or angry one moment and then the next moment they are back to laughing and playing. This is all completely normal.
  • Teenagers on the other hand grieve more like an adult but don’t yet have all the life experience to cope with all of these big feelings. They understand the permanence of death, and have the ability to deal with loss but only based on their previous experiences.

Be there for them.

  • Be there for them when they need to talk. Teenagers may feel that no one understands what they are going through because they are in an egocentric phase of development so it is very important to empathize with them and just be present when they need someone.
  • Be there for them when they need a break from the grief. Younger children have this innate ability to take breaks from their grief through play, and this time might be a good opportunity for you too, to take a break from those hard feelings for a moment. Teenagers may need to be encouraged to hangout with their friends.

Connect them with a community.

  • The importance of finding your “tribe” is so important especially to youth who strive on community and social acceptance. Finding that group of friends is even harder, and more important when a youth have gone through something that not many of their peers have, like the loss of a parent or a sibling.
  • Help connect them with a supportive community of peers who understand what they are going through. This community could be a local grief support group, or a bereaved summer camp or the Grief Pop-Up on Upopolis.

Introducing the Upopolis Grief Pop-Up

Upopolis saw this need and has created a special place for youth going through grief. This community aims to help these youth find someone else who just gets what they’re going through.

Meeting the Needs of Siblings

A brother or sister’s illness or hospitalization can have quite the impact on siblings. This medical situation is entirely new to them and the family as a whole. The sibling may hear and see things they don’t fully understand, their routines may be shaken up, and they may be separated from their family during hospital visits, admission or appointments. These siblings often find their brother or sister is receiving special attention and they themselves tend to feel left behind.

This is all normal.

The family may start to feel challenges affecting their dynamics and relationships, and the siblings can often start to feel lonely, isolated, confused, guilty, angry or worried. Parents may start to find the siblings of these children with illness or hospitalization are expressing their feelings through new behavioural issues, such as a difference in eating and sleeping habits, aggression, becoming withdrawn, difficulties in school, regressing to skills of an earlier age (such as wetting the bed), and clinging to parents.

This is all normal, too!

So how can we support these siblings?

Being aware of these changes and talking openly with your child is the first step in supporting them during this stressful time.

Tips for Supporting Siblings

  • Talk openly and honestly with your child about the events or situation affecting the family using information and language they understand. It is important to do this throughout your journey.
  • Continue daily routines and schedules as much as you can. Keep up their expectations (they still need to do their homework!) and engage in regular family traditions (do you have pizza night every Friday? Bring it into the hospital with them!) This gives your child a sense of security and stability.
  • Talk with your child about how they are feeling about their brother or sister’s illness or hospital admission; ask them if they have any questions or concerns.
  • Acknowledge these feelings and thank them for telling you! It’s normal to be feeling the way they are and your child needs to hear this.
  • Keep all your children connected with one another. This can be done through phone calls, texts, video chats, sharing drawings or photos, and making gifts like cards for one another.
  • Try to maintain alone time with the sibling. Would you have normally gone to their soccer game? Arrange for someone to stay with your other child so you can make these special moments.
  • Continue to reassure siblings that they did not cause this, they most likely will not get sick themselves, and that they are valued and loved.

Who else can help you?

            It really does take a village to raise a child! Don’t be afraid to ask for help if you need it.

  • Let your child’s school know about this situation so they have someone available there, like a teacher or counselor, to support them.
  • If you are not able to be with your child, make arrangements with an adult who your child is familiar with to spend time with them.
  • Look into support groups for siblings. Siblings will have the chance to meet and interact with others who are sharing the same feelings and experiences as themselves. This helps relieve feelings of loneliness and isolation.

Do you know a youth who is a sibling and is in need of more support? Upopolis can help! With a doctor’s referral, your sibling can join our new Sibling Pop-Up, a safe, online space where siblings can meet and connect with one another. Visit upopolis.com – Healthcare Professionals to have your child referred to our online platform, or e-mail support@upopolis.com for more assistance.

The takeaway? It is important for siblings to know that everything they are feeling is normal, and that they are a valued member of the family. Expressing their feelings, whether that’s with you or another support person or group, is key to helping them cope during these stressful situations. You may find that with some love and attention to detail, this stressful time turns into a positive experience for siblings and can help them develop into understanding and resilient adults.