We know there is no parenting playbook; there certainly isn’t one when you add PANS/PANDAS to the mix. As parents, we are often second-guessing our decisions. So, as you read this section on supporting siblings of PANS/PANDAS patients, remember, every household, sibling, and PANS/PANDAS patient is unique. What we need to adjust, support, and explore is going to be different. Each one of our children needs us, and each one of their needs is equally important. Some days we simply can’t shield siblings from the stressors caused by PANS/PANDAS. That is okay. We need to be conscientious of the ways we can alleviate the stress and find means to encourage our kids to express their feelings, so no one feels isolated or invalidated. When we don’t handle a situation the way we want to, take a moment to acknowledge it, forgive ourselves, and continue to work on it. Always remember PANS/PANDAS is hard, we are not perfect, and we need to be gentle with our family and ourselves. – Gabriella True
Helping siblings feel supported, empowered, and independent can help them have more positive feelings about their sibling with PANS PANDAS. You can’t prevent their life from being affected but giving them space and protection from feeling that the weight of their sibling’s struggle is on their shoulders is essential.
PANS/PANDAS does not just affect the person with the diagnosis. It affects the entire family. The sibling’s experience is essential to pay attention to and address. Since many families have multiple children with PANS/PANDAS, the sibling experience can be especially unique. The bottom line is siblings have individual needs themselves. We often hear about all the positive things having a special needs sibling teaches you: being empathetic, resilient, and responsible, but at the same time, there is a significant burden that this role places on their shoulders. We must pay attention to each child’s needs to begin to relieve their complex struggles.
Some of the Positives Experienced by PANS/PANDAS Siblings
As hard as living with PANS/PANDAS is, siblings can learn and grow in many ways. There are many positive character traits that siblings often possess.
- Accepting of differences
- Strong coping skills
- Interested in health and well being
- Strong appreciation for family and togetherness
Some of the Challenges Experienced by PANS/PANDAS Siblings
- Siblings Have Their Own Set of Special Needs
Siblings often hold a lot in which can take a significant toll over time. It is tough to juggle the needs of all children in the household as it is, but this is especially true when you are in crisis mode. Unfortunately, there are not many programs available to support siblings of those with mental health issues, unlike with cancer. So parents find themselves in positions in which they have to do their best to cobble essential supports together.
- Attention Shifts to the Child with PANS/PANDAS.
The sibling with PANS/PANDAS will get a significant share of attention. During a flare, whether it is the first or the tenth, the focus is on the child with PANS/PANDAS. Because of the nature of PANS/PANDAS, this shift in attention typically happens rapidly. Focus often remains on the child with PANS/PANDAS between flares. Depending on the age of the sibling, they might not fully understand why parents are not giving them as much attention as they don’t really understand the disease. This shift in attention can lead to resentment, especially if this happens over an extended period.
- A Burdensome Sense of Responsibility
Many siblings have to grow up pretty fast. They may have to help their parents care for the one with PANS/PANDAS. Or they are unwittingly tasked with having to care for the younger siblings or doing more of the household care. Emotional stress causes children to have to think about things that most children do not encounter until later in life.
- Feelings of Perfectionism (and the opposite) and Inadequacy
Some siblings may feel a need to overcompensate for their sibling’s issues. Thus, they feel the need to be perfect, so their parents do not have to worry about them; mistakes would only add to their parents’ stress. Also, some siblings strive for perfection so they can get some attention too. Perfection is impossible to achieve, and not reaching it can lead to feelings of inadequacy and increased stress. The opposite can also happen. Some children will act out to gain attention. Some children also do not apply themselves to their full potential because they feel a sense of hopelessness.
- Feelings Are Often Invalidated, Not Addressed
Siblings often are hesitant to be open about their feelings regarding how PANS/PANDAS has affected their lives too. It is crucial to allow siblings to express all of their feelings about their sibling and PANS/PANDAS. Not all the emotions they will express are positive. They should not be shamed for having these feelings. Often their thoughts contradict each other, which further adds to the confusion about their feelings and the situation.
Common complicated feelings a sibling may have
- Scared/Worried about their sibling’s safety, well-being, future
- Guilty for not having PANS/PANDAS (survivor’s guilt)
- Worry that they will eventually get PANS/PANDAS too
- Jealous of the attention the sibling receives
- Desire to be perfect
- Embarrassment about their sibling’s behaviors
- Stress and pressure to do more
- Invalidated when their feelings are rejected
- Angry about all the things PANS/PANDAS has brought into their life
- Resentful because life is not “normal”
All emotions are valid. Siblings need space to speak freely
Often siblings, feel they can’t say anything negative about their sibling or the disorder. However, they need to be able to have a safe space with their parents to do so. Their feelings need to be validated and heard. Typically siblings complain about each other and have disagreements; it is crucial to allow typical sibling behavior to occur. Some kids are going to feel sad, and others feel stressed, isolated, resentful, and even angry. These feelings are okay as long as we address some of these feelings and provide tools to help them cope and do what we can to improve the situation.
Even non-life threatening problems matter too
Siblings often feel their issues are less significant or other people make them feel that way. Complex medical concerns, like seen in PANS/PANDAS, are clearly substantial, but so are day to day struggles of growing up whether they be with friends, school, or extracurricular activities. Do not minimize the sibling’s struggles just because they are not life or death issues. Powering through and being resilient about every problem a sibling faces could lead to more significant mental health and well-being issues.
Breeds feelings of isolation and embarrassment
Growing up, one often feels like they are the only ones experiencing a particular situation or emotion. Even though there are so many children with special needs, often siblings don’t have a friend who truly understands what it is like in their world. Also, siblings often feel embarrassed by the behaviors and symptoms exhibited by the sibling with PANS/PANDAS. Children don’t necessarily have the tools to explain their sibling’s actions and symptoms. Siblings often don’t want their friends to come over to their house. All of this can lead to a feeling of isolation.
Four Key Areas of Support:
- Be Consistent – PANS PANDAS can disrupt the family’s schedule in a blink of an eye. So, as best you can maintain familiar routines.
- Connect – We won’t always get to devote as much time to the siblings as before, especially during a flare, so be creative about ways to keep a solid connection between you and the siblings. Put notes in their lunch bag, set aside one-on-one time even if only for short periods, etc.
- Communicate – Since schedules have changed and we are not always sure what comes next, do your best to communicate with siblings about changes to the schedule so they are left wondering for too long. Also, encourage siblings to talk to you about all their questions and concerns.
- Educate – Explain what PANS PANDAS is and how it will affect the household in an age-appropriate way. There are some PANS PANDAS books written for kids that can help you with this.
Ten Ways to Support Siblings within the Four Key Areas
- Explain PANS/PANDAS in an age-appropriate way
- Provide information. Explain PANS PANDAS in an easy-to-understand way.
- It may be helpful to focus on explaining the strengths and weaknesses of the sibling with PANS/PANDAS, so it is understood that not all behaviors are choice-based.
- Explain why all the doctor appointments and medical interventions are needed.
- Talk openly about emotions and accept them
- Ask them how they feel. Encourage siblings to share their emotions even if they are challenging to hear.
- Let siblings know they are heard, understood, and respected.
- Provide avenues of support to siblings who are having difficulty beyond what you can handle as a family. Therapy and sibling groups can be helpful.
- Schedule time for the sibling
- This might not be as possible as you like during a flare. Do your best, especially when not in crisis mode.
- This is going to look different from family to family and sibling to sibling.
- The actual amount of time spent might not be equal, but it should be done consistently and with as much undivided attention as possible. Ten minutes can be meaningful!
- Be realistic about your time; don’t over-promise how much time you can dedicate to the sibling. They still may resent you spending less time with them, but at least they are not further disappointed by promises not kept.
- Schedule time for activities other than PANS/PANDAS
- Do not talk about PANS/PANDAS constantly. Practice not bringing it up to anyone, even the patient, for an entire day (or longer). PANS/PANDAS should not be the constant chatter in the foreground or background of your family’s whole life.
- Be consistent with consequences as appropriate
- Being consistent with consequences can be tricky to do when some PANS/PANDAS behaviors are a manifestation of the disorder, not always choice-based. This is why referring back to point #1- Explaining PANS/PANDAS is so crucial. So you can help explain why consequences are not always equal.
- When appropriate, consequences should be consistent between the child with PANS/PANDAS and the sibling.
- Highlight the positives
- The positives of living with PANS/PANDAS can be hard to come by. But it can be helpful to highlight things you and the siblings have learned from the experience. For example, learning resiliency, becoming more empathetic, being more patient, etc.
- Build-in supports for the sibling
- Be conscientious regarding the sibling’s mental health by being aware of signs of depression. Know what is happening at school and with friends.
- For many people, there is still a stigma against seeking professional help, so it is vital to be proactive by having open conversations about mental health and the possibility of seeking therapy. A sibling might not need therapy to help cope with the unique needs of having a sibling with special needs, but they should feel comfortable trying it if they do need it.
- It is vital to model self-care. If the sibling sees the parents/caregivers taking care of themselves both physically and emotionally, they will have an easier time doing it for themselves. And remember, self-care is not about pampering; it is about being supportive of one’s own essential needs.
- Provide encouragement, praise, and support
- Sometimes we focus on the PANS/PANDAS patients’ successes, so make sure you highlight the sibling’s achievements too, even if they may seem like normal, everyday tasks for them.
- Encourage things the sibling is most proud of. Give them their moment to shine. Show them you value their efforts and applaud their achievements.
- Stop rushing and re-prioritize
- You are pulled in every direction all day every day as a parent. Pare down that to-do list and then pare it down again. Relieve yourself from the stress of over-scheduling your life. Do this for your children too. They do not need to do every single extracurricular activity offered to them. Kids usually know what activities they like the most. Teaching them to be selective with their time will be a benefit throughout life. This could also reduce the overstimulation of your child with PANS/PANDAS.
- Say thank you
- Don’t take all the sibling does for granted. Appreciating and acknowledging them goes a long way.
- Thank them for being a great sibling, being loving, loyal, kind, and patient, etc. Thank them for helping more around the house.
Return to section: