School Action Resource Kit

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For Parents

Welcome to Our Spot! We're glad you found us and hope you'll take time to read the information crafted with you in mind. Our Spot aims to answer questions about managing the emotional and physical aspects of your child's psoriatic disease. Get tips and access resources that will help you and your family thrive.

 

The emotional impact of psoriatic disease

Not only does psoriasis and/or psoriatic arthritis affect a child or teen physically, it also affects:

  • How they view themselves and interact with the world around them.
  • The activities they choose to be involved with.
  • Who they choose to be their friends, and the interests they develop.

For some children, having psoriasis has little impact or emotional response. For others, it can have a huge effect on a child’s mood and how he/she sees themselves. Knowing what to expect and how to cope will help you and your child move through emotional changes associated with having psoriatic disease.

Psoriatic disease presents emotional responses that ebb and flow with flares of the disease:

Embarrassment                              Anger                                     Envy or jealousy                  Happy

Fear                                                Loneliness                             Introversion                         Sad

Joy                                                 Insecurity                               Confusion                            Hopeful

Self-loathing                                  Confidence                             Anxiousness                        Hesitant

Recognize that coming to terms with the disease may take time and talking about feelings is just as important as managing the physical aspects. Some of the feelings mentioned above should not be dismissed and can have significant impact on your child’s self-esteem if not addressed early. (Especially if signs suggest depression, apathy or anger.)

What can you do?

Be supportive, but don’t focus too much on the disease. Drawing too much attention to the disease may make your child feel different. If you use embarrassed or negative tones, your child may feel psoriatic disease is something to be ashamed of. It isn’t. Acknowledge the management aspects of the disease, but focus more on your child as an individual and their day-to-day accomplishments such as “What happened in school today?” or “Wow, you played a great game tonight.”

Help your child identify and express their feelings. Talking about how he/she feels when the disease flares can help. Does your child feel anger, frustration or confusion as to why it’s happening again, or like it’s his/her fault because they did something to cause the flare? Or do they ask, “Why me?” Apprehension about psoriasis returning or getting worse is common.

Talk through such feelings, indicating it’s normal to feel these emotions. Explain that it’s the nature of the disease to come and go, and that your child didn’t do anything wrong. The disease is unpredictable. Talk about potential triggers and make journal notes in the symptom tracker to discuss with your child’s doctor. You could say, “Having psoriasis is just like having blue eyes or brown hair. It’s part of who you are. It’s not your fault.” Or “It’s not clear why some people have it and others don’t.” By talking about feelings, you might be able to identify solutions to help your child feel better.

Tip: Help young children learn how to identify their feelings by making a list of feelings or use faces like emojis to describe how they feel. He or she can choose a feeling on a list or point to a face that represents how they feel on a particular day.

  • Be careful what you say about your child covering up his/her psoriasis. Encouraging your child to cover up may make them feel like they are different and you are embarrassed by their disease. Let your child decide if they want to flaunt their flares and teach others about their disease. More and more people are becoming aware of what psoriasis is and they may want to know more about it. If your child feels more comfortable in covering their scales, that’s his/her choice. Work towards building their self-confidence to the point where they can learn to take risks and just focus on who they are as an individual.
  • Help build your child’s self-esteem. Encourage your child to look at themselves as a whole person and not just focus on psoriasis or psoriatic arthritis. That’s just one part of who they are. To help your child see the bigger picture, ask him/her to create a list of all the things they like about themselves and not to focus on one specific area. This will help your child discover their own uniqueness, which may prompt them to expand beyond their comfort zone and inspire true confidence in who they see in the mirror. 

 

What happens when your child becomes a target for bullying?

Sometimes kids with psoriasis and/or psoriatic arthritis become a target for teasing simply because of being different. This is wrong and is usually due to ignorance and a lack of understanding of the disease. Providing education to classmates or friends may help. However, if attempts to provide education fail, then other measures may need to be taken.

Signs of bullying:

  • Withdrawing from life’s activities
  • Avoidance of certain situations or social events
  • Sudden loss of friends             
  • Acting out
  • Changes in eating habits (skipping meals or binging) or trouble sleeping
  • Vague health complaints such as tummy troubles or headaches
  • Loss of interest in school, missed school days and declining grades
  • Self-destructive behaviors such as harming themselves or talking about suicide. If your child is at this point, contact the National Suicide Prevention Lifeline or call 1-800-273-8255.

 

If some or all of the signs of bullying seem to fit your child, there are actions you can take:

Talk with your child about the situation and how your child could positively respond. Bullying can make a child feel helpless and nervous about talking with an adult. He/she fears retaliation or of being rejected by peers. They don’t want to be seen as weak or as someone who tells on others. Reassure your child that it’s OK to ask for help and that bullying is not OK. It’s also not OK to physically engage a bully. Someone could get hurt. Encourage your child to ignore the encounter when possible and ask for help. Positive self-talk and confidence may actually cause the bully to ignore your child.

If bullying is occurring at school, speak with your child’s teacher, principal, coach or other adults involved in your child’s life. Present information about the disease to school staff and your child’s classmates. The more they understand about the disease, the less likely they are to tease. To request a school presentation, email ourspot@psoriasis.org.

If your child is under 16, monitor their social media use. Know their passwords and check to make sure they are not being bullied. Cyberbullying is very real and can be equally as harmful given the potential reach online. Urge your child to always think before they post. You never know how far a post will travel and who will be reading it. It’s best to play it safe and not post anything that is hurtful or embarrassing.

Talk with a school counselor or seek professional help to work through the issues associated with bullying. Unfortunately, bullying can increase your child’s stress level which makes psoriasis worse. This in turn makes psoriasis more of a challenge to treat, which can then make the bullying worse. Helping your child learn coping skills to address bullying will ultimately reduce your child’s stress and help the psoriasis.

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Communication Tips

It’s all about communication

What and how you communicate is important for navigating the ups and downs of living with a chronic disease such as psoriasis and psoriatic arthritis. If your child is newly diagnosed, you may be adapting to a new way of life. If your child has had psoriatic disease for a while and is now entering the teen years, new challenges may arise. Whatever the circumstances, it’s important to keep the lines of communication open within your family and your support system.

Tips for communicating with your child

Encourage your child to see the big picture

Psoriatic disease doesn’t have to take control of your family’s life. It needs to be put into the right perspective. Offer hope and encouragement that helps your child see the bigger picture in life while acknowledging the current issue. Reinforce the following basic messages at different times and in different ways:

  • “You are not alone. Millions of people have psoriasis and psoriatic arthritis.”
  • “This disease can ebb and flow depending on what happens in life. Flares and remissions are all part of the disease. When a flare occurs, let’s look at our options and what we can do. We can always consider new treatment options.”
  • “It’s not contagious, nor is it life-threatening. You can’t spread it or catch it from anyone.”
  • “Psoriasis or psoriatic arthritis is not your fault. You didn’t do anything to make it happen. It’s something you were born with, like the color of your eyes or hair.”
  • “Psoriatic disease is not who you are. It doesn’t define you as an individual nor what you can do.”

Actively listen to your child and encourage communication of feelings

As a parent, it’s hard not to give advice. You want to help your child and solve problems. Sometimes listening is the best first step towards fostering open communication and solving problems together.

  • Listen to your child’s comments and questions without distractions or mentally preparing a rebuttal. For example, when your child questions why people treat him or her differently, respond by bringing together the facts related to the problem. This indicates your understanding and you can also use this approach to try to draw out more information. You could say:

    “So, it sounds to me like you don’t like it when people stare at you because you feel they are treating you differently. I understand why you are feeling upset and I feel the same way. What do you think would happen if you approach people who treat you differently? What can you do that might make this situation better?”

    During this type of conversation, encourage your child to communicate about how he or she feels about having psoriasis and/or psoriatic arthritis, and how to respond positively when faced with adverse situations.

  • Remember non-verbal signs are just as important. Smiling, nodding or direct eye contact help show you are actively listening. This may also encourage your child to be more open and honest about how they feel. Also, don’t forget to look for non-verbal signs that your child may show – glancing away, dropped shoulders or head. Try not to show negative facial expressions since that is something your child will pick up on, too.
  • Help your child become resilient. Identify positive reactions to counter negative situations such as educating to those who are ignorant about the disease to raise awareness and increase acceptance. If that doesn’t work, teach your child to move on and brush off displays of ignorance.

Above all, respect your child’s feelings and recognize the pain, but try not to overreact or focus too much on the disease. Everyone has something that makes her or her different. Psoriasis is just one part of who your child is.

Don’t be the “helicopter” parent

Hovering over your child or nagging about treatment regimens will only build resentment and complicate open communication. Don’t blame your child for flares or nag about treating his/her skin.

Instead, think about your choice of words or how you ask questions. Help your child to understand how important it is to stick to treatment schedules and why you ask questions. Share your feelings or worries.

React calmly. If you overreact, your child will remember and avoid the same confrontation in the future. By letting your child know you are listening, he or she will more likely be honest with you no matter what occurred without worrying about nagging or negative responses. Recognize mistakes happen and turn attention towards finding a realistic solution. As your child grows older, he or she may turn to friends for support instead of you. That’s normal. The critical point is, keep the lines of communication open.

The home team

Remember siblings are affected, too

In addition to caring and communicating with the child who has psoriatic disease, it’s important to help siblings understand the disease, too. Talk with siblings and emphasize psoriasis and psoriatic arthritis are not contagious. Talk with them about their feelings and encourage them to open up. Each child is different and may accept the diagnosis differently. Discuss the treatment options and how they may be able to help without placing too much responsibility on them.

Develop family routines and rituals that involve all family members based on what each person may be able to do. Having regular routines helps reduce stress. Above all, treat each child fairly, make time for them and let each one be the individuals they are. Psoriatic disease shouldn’t change family dynamics.

The parental team

Proper communication is also important between you as parents – to work together as a team on behalf of your child with psoriatic disease or other members of your family. Here are a few tips to help:

  • Make treatment decisions together and be consistent on how you deliver those decisions.
  • Recognize that you represent the role model. Your child looks to you for guidance and follows your lead in how you react to problems. Talk positively about managing psoriasis, yet don’t let it be the focus of your lives together.
  • Talk with your spouse about your feelings, including fear, anger, resentment or sense of guilt. Talk at a time when you’re open to solutions and not when you’re angry.
  • Move on quickly from mistakes and find solutions together.
  • • Take care of yourself first to ensure you are strong enough to take care of your child. If you need help, ask for it. Or connect with one of our Psoriasis One to One parent volunteers. They understand what it means to have a child with psoriatic disease.

Communicating with others in your child’s life

Communicating with your child’s health care team

Preparing for appointments and asking the right questions on behalf of your child will help ensure you have a positive experience with your health care provider team and receive the most appropriate treatment.

Tips to help prepare for an appointment include:

  • Bring a list of current and past treatments, side effects, and what worked or didn’t work for your child.
  • Identify a list of questions you would like to ask your child’s provider and prioritize the list based on what you need to know versus what could wait given how long your appointment will be.
  • Help your child learn how to be an active participant in appointments such as by explaining his/her symptoms, what may have triggered a flare, and how the disease impacts his/her life. Bring the Symptom Tracker journal to help make discussion easier.
  • Ask your child in advance if he or she prefers to not discuss certain issues with a provider. There may be other ways to approach such issues without embarrassing your child.
  • Be informed about the disease and what treatment options are available – including those that are recently approved. This also includes being aware of your insurance benefits and what treatments will be covered. Knowing this in advance will help save time and avoid stress later.

Learn other tips for preparing for an appointment.

During the appointment:

  • If you’re not sure about something said, such as when to apply a treatment, ask for clarification.
  • Questions about treatment options could include:
    • How long has this treatment been used for children with psoriasis or psoriatic arthritis?
    • How quickly and how long will it work?
    • What are the common side effects and will they go away if treatment is stopped?
    • What monitoring is needed for side effects?
    • What are the potential benefits?
    • Can the treatment be stopped suddenly or gradually?
    • What are the other treatment options?
  • Be sure to talk about treatment goals. When should you expect a treatment to work for your child, and if it doesn’t, what are the next steps? Knowing this information in advance will help you and your child determine if other treatment options are needed.
  • Be assertive, but balance your assertiveness with understanding. Other staff members may be able to help you.
  • Voice appreciation for all that is done on behalf of your child. Your appreciation will always be remembered and will work wonders when urgent issues occur where you really need help.

Your health care provider is part of your child’s support team. Working together will help make life easier for you and your child.

Communicating with others about your child’s psoriasis

One of the best things you can do is teach your child to be their own advocate. Work with your child to identify language that feels comfortable yet briefly provides education about their disease. When opportunities to provide education come up, let your child try first and then see if they need help. For example, when someone at the grocery store continues to stare at your child, you and your child can either ignore the individual or simply say:

“I have [or my child has] psoriasis, which is a genetic skin disease that causes skin cells to grow seven to 10 times faster than most people, which means it builds up on the skin. Don’t worry, it’s not contagious.”

If your child wants to offer more details, that’s their choice. The situation will determine how much to share. Some people will ask questions and want to know more. Others want to make sure they can’t catch anything, so keeping the response brief will work best. It’s possible the person staring may also have psoriasis and isn’t sure how to bring up the subject. Use your best judgment regarding the circumstance and help your child find the best response.

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