Family Resources

Your child likely presented with symptoms that caused you to seek medical attention. Often, it takes many doctor appointments, hospital visits and tests, and/or procedures to arrive at a diagnosis. Once a diagnosis is made, there are more doctor visits, additional specialist appointments, new medications to give and a many other changes associated with caring for your child.

As a parent, you will seek to understand this disease and search for information and the best care available. There may be times you feel overwhelmed and, as time goes on, it will be important for you to take care of yourself while also caring for your child’s needs.
Remember … just like on an airplane when the flight attendant states “Put on your oxygen mask before you help others” … the same is true when caring for a child with a chronic illness: Take care of yourself first!

Some suggestions:

• Try not to focus on your child’s illness 24/7
• Take breaks when you can so you can relax and do things that you enjoy
• Stay active; walking is good for mental health; try to get fresh air every day
• Try meditation or Yoga
• Find someone to talk with about your feelings, such as a partner, friend, counselor or support group
• Say yes to help. Be willing to accept assistance with transportation, meals, childcare, and other daily activities from friends and relatives.
• Have fun! Enjoying yourself and having fun can go a long way toward relieving stress and recharging your battery. You will need time for you.

For further information: Caregivers Toolkit, by Velma Mockett: https://calgaryvasculitis.com/wp-content/uploads/2020/02/CVA-CAREGIVER-TOOL-KIT.pdf

The financial impact of caring for your child with vasculitis also may present new challenges: medical visits that disrupt work schedules, the high cost of healthcare and equipment, providing necessary transportation, and limited funds for other household priorities such as groceries or repairs.

Addressing some of the financial stressors:

• As you navigate health insurance, it will be important to choose the plan which provides the best access to your child’s specialists, as well as overall medical coverage.
• Seek out health care advocates who can assist you with multiple prescription refills, transportation needs, and finding providers within your network.
• Check with your child’s hospital – sometimes they offer financial assistance programs.
• Check with your doctor about participating in a research trial.

There can be a drastic shift in family dynamics when a child is diagnosed with an illness such as vasculitis.  Siblings may become jealous of the extra attention and time that their sibling with vasculitis is receiving from parents, other relatives, teachers and friends.  They also may be anxious and worried about their sibling’s health and well-being.  It may not be possible to take away the source of your kids’ emotional pain, but you can help ease their stress and try to make them feel secure, cared for, and supported.

It will be important to try to keep the family routines as close to normal as possible. Siblings should continue to attend school, participate in extracurricular activities, and spend time with friends.  Talk with them often about how they are doing and what they are feeling.  Watch for signs of stress in your other children such as changes in sleep patterns, appetite, mood, behavior, and school performance.

Ways to help your other children:

• Keep the lines of communication open. Encourage siblings to talk about their feelings and stay in tune with their actions and behaviors. This can be difficult when you’re exhausted, stressed, and away at the clinic appointments or the hospital for long periods of time, but a little attention and conversation can help your other kids know that their needs are important also.
• Do not hide the disease from the other children – they know when something is off in the family. Try to explain their sibling’s diagnosis in age-appropriate language. 
• Try to provide an opportunity for your other children to share some one-on-one time with you which can give them a much-needed outlet to reconnect with you and have the focus be solely on them and not on their sibling’s illness. Also, try to arrange for your kids to spend time with and enjoy other relatives and family friends.
• Include siblings in the care and treatment process when possible. Depending on their ages and maturity level, visiting the hospital, meeting the doctors and nurses, or tagging along to clinic visits can help make the illness less frightening and more understandable. There are camps, activities, and workshops designed to help your children make connections and get support while managing the changes caused by having a sibling with vasculitis and special medical needs. Child life professionals can also talk with siblings and help them navigate their feelings about their brother or sister.

Child life specialists are specially trained in child development and provide psychosocial support for children and families in the healthcare setting. The child life specialist can provide emotional support for you and your family while visiting the hospital and also help prepare your child and family for upcoming visits and procedures. In addition, child life specialists can provide much guidance in addressing the needs of your child’s siblings including:

• Providing developmentally appropriate education about your child’s diagnosis for the sibling(s).
• Helping maintain sibling connection by providing activities and finding creative ways to help siblings connect when they cannot be together.

Talking with siblings about a new diagnosis may feel overwhelming.  Siblings of patients are in a unique position and are affected by changes in the family because of illness. Their daily life may change when their brother or sister is diagnosed with a chronic vasculitis, and they will need support. Siblings will also need honest information presented in a way that they can understand so they know what to expect. As a caregiver, you know your family best and this information is best coming from you.

Here are some tips and suggestions to help support you as you start talking about this new diagnosis. Please adapt these to meet your family’s needs.

Start slow and simple. Let your child lead the conversation. Answer the questions they are asking.

Try starting with something like:

• PreK “We went to the hospital so the doctors could help us learn why ____ is not feeling well. The doctors told us that _____’s body is not working the way it needs to. The doctors decided that the best way to take of ________ is to ______________________.”
• School Aged/Teen “We went to the hospital so the doctors could help us learn more about why ____ is not feeling well. The doctors told us that _____’s body is not working as well as it needs to. ____’s diagnosis is ______. The doctors decided that the best way to treat _________is with ____________.

Help your child understand that they did not cause this to happen. It is no ones fault. 

• Pre-K “I want you to know that you did not do anything to make this happen. Nobody else did anything to make this happen.
• School-Aged/Teen “I want you to understand that it is not your fault this has happened. You did not do anything to make it happen. It is not anybody else’s fault; it just happened.

What might this mean for your children? 

• Pre-K “We know some things are different for you right now. We will make sure that you always have someone to help take care of you too.”
• School-Aged “We know that your routine is changing for now. We will make sure that you always have someone to help take care of you too.”
• Teen “We know your routine is changing too. We will make sure that you are always taken care of and have the things you need.”

Assure siblings that a new diagnosis will not change who their brother/sister is as a person.

Help brothers/sisters find their role to help the patient. Explain that their brother/sister may look or feel different due to the diagnosis or side effects from medications. They may need to get many tests and go to several types of doctors for testing and treatment.

• PreK/School-Aged “_____ is still going to be your brother/sister and will still love you. You can help them by cheering them up, calling on the phone, making cards, and playing together just like you do now.”
• Teen “A new diagnosis won’t change who ______ is as a person or what they can do in the future. They will still be your brother/sister. You can help by calling on the phone, making cards or gifts and spending time with them like you do now.”

Validate any feelings siblings have. 

All feelings are okay and expressing them is valuable. It is normal for siblings to feel jealousy, anger and/or guilt. Give your child time to process and ask questions. Explore their feelings by asking open-ended questions like:

• “How do you feel about what is happening to ____?”
• “What questions do you have about _____ new diagnosis?”
• “Is there anything else you are wondering about?”

• Remind siblings that you love and care for them very much even though things are different for them right now.
• Find time to have special one-on-one time with your child’s siblings. Plan special dates or things to do together. This helps your children feel important and supported.
• Find safe people who your children can rely on and talk to when you cannot be with them, such as grandparents, aunts/uncles, close friends, or neighbors.
• Find ways to help your children connect with each other. Think about how to stay connected when apart (i.e., hospital admission). Try sending letters, notes, FaceTime/Skype, etc. Reach out to a child life specialist at your hospital for additional ideas.

• Deep breathing: When feeling anxious take deep breaths while counting slowly. Focusing on these simple tasks helps you to refocus your thoughts.
• Exercise: Go for a bike ride, take a walk, or play a sports activity. Getting your body moving helps to promote positive feelings.
• Journaling: Write your thoughts in a journal or on a piece of paper. You can keep the paper in a special place, share it with someone who cares for you, or you can rip it into tiny pieces and throw it away. Writing the thought down is about the physical act of removing it from your brain and putting it on to paper. Destroying the paper thought by ripping into tiny pieces is a physical representation of letting it go. These strategies can help decrease anxiety or worry when feeling overwhelmed.
• Art: Engage in art activities – painting, coloring, clay. This allows you the opportunity to express yourself.
• Medical Play: Use a doctor play kit at home to help express medical experiences – especially helpful with younger children.
• Talk with Someone: Find a friend, family member, or stuffed animal you can talk to. Make this a safe space where there is no judgment, and you are 100% honest and open.
• Music: Listen to or play music that matches your mood. This allows for the opportunity to express oneself as well as promotes relaxation.
• Mediation/Guided Imagery: Find a guided imagery or meditation video, app, or podcast, or have a parent or friend read one to you from a book. Focus on what the person is saying to try and forget about what is bothering you.
• Progressive Muscle Relaxation: Starting from the top of your head and working towards your toes, squeeze a part of your body tight (like your eyes, then mouth, shoulder, etc.) and then let it relax. Sometimes it helps to count to 5 or 10 when you squeeze your muscles and then release. Work your way through your body and repeat as needed. When relaxing your body think about your stress and worries going away.
• Throwing/Hitting/Kicking Safe Objects: Identify safe things to let physical aggression out – a pillow, throwing soft balls/tissues/socks, kicking a soccer ball. Talk with an adult about what may be a safe option to physically express your emotions.