Welcome to Day 12 of the “12 Days of PANDAS Sucks”!
Every day from December 25 – January 5, you can expect to see a blog post from yours truly. You probably won’t be able to sing the days as a song, but I think you’ll still like it. LOL! However, I will be posting a different version of the song “The 12 Days of Christmas” on each blog. For Day 12, click here to hear Natalie Cole’s version (R.I.P Natalie).
On this twelfth day of PANDAS Sucks, I give to you TWELVE WAYS TO ADVOCATE ALL YEAR LONG.
You might ask, “Advocate for PANDAS/PANS all year long? Just what is that supposed to mean Sarah?” To which I would reply, Well [insert your name here], advocating for PANDAS/PANS all year long can mean pretty much whatever you want it to mean.”
I’ve talked about Advocacy before here. That was when I finally realized that I AM an a real, live PANDAS/PANS Advocate. Gulp. And if you have ever talked about PANDAS/PANS and done anything to further the Awareness and Understanding and Acceptance, then you are a PANDAS/PANS Advocate too. The trick is how do we start turning our individual advocacy efforts into bigger movements so we can affect real changes? Yes, we have had PANDAS/PANS Awareness Day on October 9th for the past three years, but what can you do monthly, weekly, daily basis for Advocacy.
Here are TWELVE WAYS TO ADVOCATE ALL YEAR LONG. (Hint: You’re probably already doing a lot of these things already.)
1. Be Social with Social Media
Are you on Facebook, Instagram, Twitter, and Pinterest, and/or other social media platforms? Like and Follow PANDAS/PANS organizations (and blogs!), and Share their information, articles, pictures on your accounts. Or find your own articles or make your own status updates, tweets, photos.
2. Tell Your Story
This might be just a one-on-one conversation with a friend or answering a question in a Facebook group or a Facebook post about a doctor’s appointment. You might choose to contact a journalist for an article or news story. There are many options here. Helping people understand what PANDAS/PANS looks like, the effects it has, what your experiences have been and letting folks know that they’re not alone…all of that can go a very long way. You might not even know who you are helping. [Want to tell your story in a PANDAS Sucks Guest Blog? I have spots open. Or if you don’t want to tell your story but still have something to say about PANDAS/PANS, that is open to you too. Contact me here and I can help you make this happen.]
Volunteering your time and talents with a PANDAS/PANS non-profit is a wonderful way to Advocate. You might think that because a group has a web site and social media accounts that they have a big staff. Ummm..NO. Most of the national and regional non-profit groups are made up of PANDAS/PANS Parents that are volunteering their time and talents. Yes, you can make financial donations to organizations to help their advocacy efforts. Contact your favorite group and offer to help. (We talked about other ways to give to PANDAS/PANS organization on the 6th Day of PANDAS Sucks.)
Yes, you can make your own financial donations to an organization to help further their missions. OR you could set up a 5K or a bike-a-thon or a read-a-thon. You can formalize the fundraising with a site. Or take up donations at a birthday party in lieu of gifts, or host a cookout or a neighborhood ice cream social and donate the proceeds. Don’t wanna initiate any kind of activity? Just watch for fundraising activities from the various PANDAS/PANS groups and/or families and support their efforts. Or give to an organization like PANDAS Physicians Network where you KNOW the funds will be used to further PANDAS/PANS awareness and research.
5. Give Up Lattes
Another way to support organizations would be to give up buying lattes (or whatever little luxury you decide) for a month, and instead give that money to a PANDAS/PANS group. Or keep track of every time you visit the organization’s web site and at the end of the year, donate a dollar per visit. You can be creative in finding ways to donate. I am sure I am safe in saying that for any of these groups that no contribution is too small…they’re all just right.
6. Read Books & Give Books
Being well informed on PANDAS/PANS is key. There are some great books out there dealing with the condition. Consider purchasing copies and giving them to your local library. Here are some of them:
PANDAS and PANS in School Settings by Patrica Rice Doran
PANS, CANS, and Automobiles by Jamie Candelaria Greene (added 1/17)
Saving Sammy: A Mother’s Fight to Cure Her Son’s OCD by Beth Alison Maloney
Childhood Interrupted: The Complete Guide to PANDAS and PANS by Beth Alison Maloney
Joshua’s Missing Peace by Lori Suthar
Out of the Fog – Into the Light by Elizabeth Ann Eberhardt
A Child’s Introduction to Understanding PANDAS by Elizabeth Gibbs.
7. Read Articles & Share Articles
We covered articles back on the 9th Day of PANDAS Sucks, and you can find important articles to read and share. Again, being informed yourself helps you be able to discuss PANDAS/PANS and know the current happenings. Sharing these articles with doctors and teachers helps them understand PANDAS/PANS even more. I once had one of our ex-pediatrician tell me that none of my doctors would ever know as much as I knew about PANDAS. That was horrifying, even if it might be true. And it’s part of the reason he is an ex-doctor, but there was more to that story. I should send him some recent articles, eh?
7. Get Family And Friends Involved
Want to get even more people talking about PANDAS/PANS? Educate your family and friends. Give them articles to give to their doctors. Let them read the books. Share your story with them. Let them be Advocates too. The more the merrier. “Alone we can do so little; together we can do so much.” ~Helen Keller
8. Give A Presentation
Can you talk? Do you know how to create a PowerPoint presentation (or know somebody else that does)? If so, then you could give a talk to a community group or at your child’s school or anywhere. You can check with related groups in your area (support groups for autism or ADHD or find a NAMI chapter) and attend a meeting and give a brief talk or pass out information.
9. Email/Call/Meet With Your Government Representatives
Here is a source to find your Senators or Representatives in Washington. You can also search for your state offices here. Share what’s on your mind when it comes to PANDAS/PANS. Some states are enacting laws and creating task forces to deal with PANDAS/PANS. These efforts will likely multiply and offer even more ways you can be advocating.
10. Go to the Movies
I am crazy excited that the PANDAS/PANS documentary, My Kid Is Not Crazy, will be released in Spring 2016. The movie’s Kickstarter campaign met its goal in 24 days ahead of schedule, which shows that as a Community, we are very interested in this film! It will be great to have copies to give to family, doctors, teachers, and whoever else needs to see this documentary and understand more about PANDAS/PANS. [NOTE: I volunteered a year of my time and talents to help with the social media and more on this film project. Like it on Facebook.]
11.Write An Editorial
People do still read newspapers. And even if they don’t, there are electronic versions of newspapers online. You might write a fact-based editorial that let people know about PANDAS/PANS. Or you could submit personal stories to spread the word.
12. Take Care of Yourself.
I cannot stress this one enough. It’s all fine and good to be a champion for a cause, but not if it costs you your health. Your PANDAS/PANS kid(s) need you to be on your A Game for them. It is 100% okay to lay down the burden of saving the world for a while. Your kid…your family…it comes first ALWAYS. I’m Team Jesse all the way! And I’m learning to be Team Sarah too. Remember those 10 Breaths I had you take day before yesterday? I have to remind myself to be mindful and to meditate and to BREATHE all the frickin’ time. But there’s only one of me, and I know that. I try to self-care and make my own health a priority, even as I would do anything to keep my kid healthy and safe.
So gimme an A-D-V-O-C-A-T-E. Or don’t. 🙂 I’m not a big fan of shoving Advocacy/Awareness down anybody’s throat. And I do NOT want them shoved down mine. It can be a form of shaming and that is never, ever helpful. NEVER! I have enough guilt as it is and do not need to add more. I certainly don’t want to add to anybody else’s guilt either. You have to do what is best for you in the moment. If you can help in the PANDAS/PANS advocacy efforts…great! If the current PANDAS/PANS advocacy efforts can help you…great! I’ve been on this journey for over five years. I will say that I can do things now that I could not do and would not have done if I were only six months into all of this and still figuring out how to heal my son. Heck, it took me a year to start the PANDAS Sucks blog after I had the idea and bought the domain name. You can only do what you can do, and sometimes, that means doing nothing (see #12 above!!!).
I will be launching a PANDAS Sucks blog series on Advocacy very soon. The idea is that we can get organized and work together and take some actions as Community and to have a bigger impact. We can also have our everyday, individual actions. Kind of like how the huge ocean is made up of tiny drops of water…we will be the ocean AND the drops when it comes to PANDAS/PANS Advocacy. Everything you do DOES make a difference. “We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop.” ~Mother Teresa
Figuring out what we want to happen is a start. More doctors accurately diagnosing and effectively treating PANDAS/PANS? Absolutely! More ways to get information to parents so they know the signs of PANDAS/PANS and that it exists? Sure! A medical code for PANDAS/PANS treatments and for legitimacy of the condition? You betcha! Having widespread knowledge of the condition in educational settings? Yes! Our list could be a million miles long. We have to start somewhere and continuing to get the word out about PANDAS/PANS can go a long way for Awareness and Understanding and Acceptance. This is how we have gotten to where we are now. You yourself likely found PANDAS/PANS because of somebody else’s Advocacy. I know that’s how I found PANDAS…at 3am in my pajamas sitting at my computer.
Do you have ideas for ways our Community can advocate as whole for PANDAS/PANS? Or know of efforts that have worked for other groups? Seen innovative strategies to get things done? Have a great idea for a fundraiser? Know exactly who we need to talk to? I’d sure love to hear all about it. If you want to help get all of this coordinated, consider contacting me here as a #13 on the list. 🙂 We can ensure that the momentum that has been building in the PANDAS/PANS Community keeps going and grows and Grows and GROWS. We can make 2016 THE year for PANDAS/PANS.
And that concludes the 12 Days of PANDAS Sucks. Thank you very much for reading! Be sure to check out all of the other Days: 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11. Watch for the new Advocacy series coming soon. FUN! I have other plans for this year too! Stay Tuned!
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.