Tips for Supporting Parents of PANS/PANDAS Children

 

Being a parent of a child with PANS/PANDAS is challenging, and offering support to your friend is essential. Together, we can make a world of difference! 🌟

 

When it comes to supporting friends who have children with PANS/PANDAS, small gestures can make a big impact. Whether you’re already friends with someone in this situation or simply aware of their journey, these tips aim to inspire you with ideas to show your support. You can create a meaningful difference in their lives by embodying kindness, generosity, and making an effort.

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At the start of our PANS PANDAS journey, I felt isolated and overwhelmed. Unfortunately, I, like many other PANS/PANDAS parents, find that just when we need the support of our old friends the most, many of them disappear. On top of the many heartbreaks that come with PANS/PANDAS, losing the friendship of old friends can be especially devastating and extremely isolating. I am certainly not solely blaming those old, lost-to-me friends, as I know our focus gets shifted immediately to our sick child, leaving little time for anything else. However, some friends may have needed guidance on how to be the great friend they want to be, and in the absence of this knowledge, they retreat suddenly or slowly. While we can successfully build a community and close friendship with PANS families that rally around and support us, we crave the embrace of the larger community around us.

So, my hope is that you, a friend of a family with PANS/PANDAS, will take to heart the suggestions on How To Support Your Friend With A PANS/PANDAS Child. This is not meant to be all-inclusive but merely serves as a starting point. We can inspire a compassionate, inclusive community where everyone feels supported and embraced. Together, let’s create a tapestry of understanding and support. Please become part of our lifelines when the twists and turns of life catch us off guard or when the weight of the day tests our patience and fortitude.

– Gabriella True

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Tips for Supporting Parents of PANS/PANDAS Children

 

Be There and Stay There

One of the most important things you can do is simply to be there for your friend. As parents, we often feel overwhelmed and pressured but being an advocate, teacher, and therapist for their PANS child adds to our responsibilities. By being there for your friend, you can offer a listening ear, provide a break, or offer advice when needed. Everyone’s needs may vary, so it’s vital to give support in a way that suits their individual situation.

Give Your Friend a Call

Make that call. Instead of opting for a text, take the time to give your friend a call. Hearing their voice and checking in on how they’re doing can make a meaningful connection. Share a funny story or invite them out for lunch. Ask them how they are doing; create a safe space and listen. A phone call demonstrates your genuine interest. If they don’t pick up, then text. 

Ask Your Friend What Support They Need

Sometimes, the best approach is to directly ask your friend how you can support them rather than assuming. This approach shows that you value and care about them, and it can be effective. We don’t always need suggestions or solutions as sometimes there are none. We just need compassion and we may need to vent. Please remember when their kiddo is in crisis, they might not stop and ask how you are. They still really do care; they are just terrified or completely mentally depleted.

Do What You Would Do for Others

When a family is in crisis, neighbors, friends, and family often rally around them with meal chains or even a single casserole. But because of lingering stigmas around mental health symptoms and a misunderstanding of PANS PANDAS, community support for a family often does not exist. However, the burden of care for families of PANS PANDAS, especially during the first acute flare, is greater than taking care of a patient with Alzheimer’s and similar to caring for a child with Rett Syndrome. This lack of support does not go unnoticed by our families; it actually hurts and adds to our isolation. So, just go ahead and help, please. Even if you have to say, I accidentally made two casseroles, so I am going to drop one off. Or send a gift card to the grocery card. Or text and ask when someone will be home and have some groceries delivered. 

Practice Empathy

It’s important to approach parents of special needs children with compassion rather than pity. Acknowledge the challenges your friend is facing and lead with a compassionate heart. Put yourself in their shoes and try to understand the challenges they face on a daily basis. These challenges can be demanding and exhausting, requiring significant time and emotional investment. Show empathy by listening without judgment and offering words of support and encouragement. This understanding will strengthen your friendship and provide much-needed reassurance to the parent.

Don’t Avoid the Topic

While avoiding discussing a child’s PANS PANDAS journey may be tempting, taking an interest can mean everything to your friend. Showing genuine curiosity and concern lets them know that you care. Don’t hesitate to ask questions when it comes from a place of genuine interest and not from a judgemental viewpoint.

Learn About PANS PANDAS

Taking the time to learn about PANS/PANDAS is a great way to support your friend. You don’t need to be an expert, but gaining some knowledge can make a difference. Don’t assume you know everything about PANS just because you read one article or watched one news story. PANS requires a paradigm shift in your understanding and how you view what looks like “bad behavior” and mental health disorders. PANS is not a result of bad parenting or someone just being a “bad” kid. PANS PANDAS patients have a neuroimmune condition that is driven by inflammation in the brain. It is a serious medical condition that often takes years and years to recover from. One simply can’t discipline or provide “enough” therapy or psychiatric medications to make it go away; instead, treatment is often a complex combination of medical and sometimes psychotherapeutic interventions over time. Due to the relapsing-remitting nature of the syndrome, the patient may have good/bad days or even months or years. So, you must not assume that they are recovered because your friend’s child seems “okay” for a while. 

Understand What Parents Experience

This is really just a short list and does not necessarily encompass what every PANS/PANDAS parent experiences.  Don’t be afraid to ask your friend what they are experiencing and as always, reserve judgment.

• We often feel isolated and experience strain on our adult friendships. We frequently feel invisible and isolated, even amongst people we have known for years, as it can be challenging to relate to others due to overwhelming trauma and our unique journey.
• We are often judged unfairly for our child’s symptoms by friends and families who do not understand the disorder.
• We are plagued by crushing anxiety and fear regarding our children’s improvement and future. We constantly question our purpose, strength, and the reasons behind our child’s challenges.
• Our self-identity undergoes a complete transformation, making us feel unrecognizable. Looking in the mirror, we can see that we carry the weight of exhaustion and visible signs of aging.
• Our marriages, health, and parenting approach are greatly impacted. Our careers, finances, and relationships are significantly affected.
• We continually grapple with hardships and face judgment for moments of sadness and longing.

Encourage Friendships with Your Children

When PANS kids get sick, they often aren’t attending school regularly, and their symptoms can create difficulties in maintaining and developing friendships. Encouraging friendships between your children and their PANS kiddos can be a wonderful experience for them and your kids. It is important to gear those activities that reflect the current abilities of the PANS child; help build inclusive social connections.

Being Patient with Last-Minute Changes or Cancellations

Parents of PANS/PANDAS children often face unpredictable situations requiring them to change or cancel plans at the last minute. It’s crucial to be patient and understanding when these circumstances arise. Here are some tips on how to support parents who may need to adjust their plans.

Flexibility is Key

Recognize that unexpected events or challenges can arise for parents of PANS PANDAS children. These situations may require them to prioritize their child’s well-being or address urgent needs. Stay flexible and understanding when plans need to be rescheduled or adjusted. Your empathy will help alleviate any additional stress or guilt they may feel about changing plans.

Avoid Taking it Personally

When plans change abruptly, it’s important to remember that it does not reflect your friend’s desire to spend time with you or your value as a friend. Your friend must prioritize their child’s unique needs and make difficult decisions accordingly. Instead of feeling disappointed or offended, offer your support and understanding during these moments.

Stay Connected

Even if plans get canceled or rescheduled, communicate regularly with your friend. Don’t just give up. Send them messages of support, check in on how they’re doing, and remind them that you’re there for them, no matter the circumstances. Your continued presence and friendship can provide comfort and stability in their lives.

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In conclusion, keeping and forming friendships as a parent can be challenging, especially when families have unique and complex needs like PANS/PANDAS. However, embracing the opportunities that arise is important. Please take these tips mentioned above to heart. Regardless of our differences and circumstances, let’s lean into those friendships and create a supportive community where everyone feels valued and included. Together, we can build lasting connections that enrich our lives.