Resolutions are like Pie Crust Promises – easily made but easily broken. So, let’s switch our thinking to PRACTICES and GOALS. This way, we have a whole year to practice and work on our goals. So, if we have to focus on other matters, we can pick up where we left off, learn, and go from there. Be gentle with yourself and proceed one day at a time.
Everyone is making resolutions. But you are still dealing with PANS PANDAS. So how do we shift our thinking and set up goals and practices that empower us and don’t set us up to fail or forget to follow through mid-year? How do we do this when we want to pull our hair out and shout – help! I can’t handle anything else! Throw me a lifeline!
Download the Goals & Practices Worksheet
Whether you are a PANS/PANDAS caregiver or patient, you have a complex set of unique challenges. We often don’t want to even think about New Year’s goals because we make them unattainable and feel like even more hard work. First, pare down the list and divide it into two sections, one about PANS/PANDAS and one about you.
For the PANS/PANDAS section, make a list of tasks you know you can accomplish but simply need a little accountability and a list of things you would like to do less of or eliminate. For the section about you, again, pick flexible, achievable goals to practice doing. And yes, we know that self-care and community care are tall orders but at least put on your own oxygen mask at some point during the year. We know you can’t always put it on first.
Ultimately, don’t focus on big lofty goals. Instead, break down those into smaller, more achievable tasks, so you have a better chance at success, and it doesn’t look like you are climbing a mountain in one straight shot but relatively small hills along the way.
Attached is a worksheet for your use. Remember, small, achievable goals are the focus. If you do all of them, you can always make more. If you don’t do them, scratch them out and replace them with what you did accomplish; remember, life can be filled with moving targets, so hit what you can! Download the Goals & Practices Worksheet
Below are a few examples. Some are probably too lofty; if they are, just let them be aspirational and not something to feel defeated by. You got this. This is your year. Appreciate anything and everything you do.
PANS/PANDAS Goals (examples)
3-5 tasks to complete:
- Find a new doctor to help with….
- Improve the 504 Plan or IEP
- Learn more about different therapies to help with….
- Trying new activities but with an exit strategy if it doesn’t work
3-5 things to decrease or stop doing:
- Allowing family members to diminish the condition
- Feeding the OCD
- Screen time – (at least a little)
Practices for PANS/PANDAS Caregivers to Live By (or at least some of them)
1. Believe in yourself and practice self-compassion. Cut yourself some slack. You are doing a great job. Everyone has bad days, and then add a dose of a big flare on top, and it is only natural to have some horrible days. PANS is hard, so don’t blame yourself whenever something doesn’t work. It is crucial to have respect for yourself and the circumstances. You are perfectly human.
2. Give yourself credit. You are a rock star, super parent. Who found that doctor? Who spent 100 hours on the phone with insurance? Who made sure those goals were SMART? Who kept your loved one safe during a rage episode? Who comforted your loved one during all the OCD and anxiety-filled meltdowns? Who made dinner and put the clothes in the washer? YOU. Because of you, your loved one’s personal needs are being met with love and compassion. Buy yourself a medal and put it by your bed if you need a daily reminder.
3. Ask for specific help. Yes, many friends and family jump ship, but some simply don’t know how to help. Give them a task to help you with. Maybe you need a weekly text from a friend just checking in, or perhaps you need help taking your non-PANS kid to soccer. Now mind you, we can’t guarantee the neighborhood will show up with casseroles. Also, don’t feel guilty when asking.
4. See it from their perspective. View the world more from the patient’s perspective, and remember this is a medical illness. For example, being angry or impatient is easy, but work on seeing it from their perspective and understanding why this illness creates these behaviors.
5. Find a local support group. Or set up a meetup at a local coffee shop in your area. Honestly, an in-person hug, an in-person laugh, or an in-person cry is amazingly restorative. You probably lost some friends along this journey; trust us, some of your new best friends are out there who get it and live it. You are not alone. Join us in the ASPIRE Facebook group.
6. Cultivate caregivers/sitters. Separation anxiety can prevent you from having anyone, but you, be with your kid. But in between flares, bring someone in to be more of a “Mother’s Helper.” Get your child comfortable with them and vice versa. Grow trust.
7. Organize your paperwork. Medical records and IEPs/504 Plans come with a swamp of paperwork. Get a binder. Get dividers. Get a three-hole punch. Put key documents upfront. And then scan it in because, you know, paper is destructible. See: Appointment Preparation
8. Learn more about PANS/PANDAS. Read a book. Read an article. Watch a webinar. Listen to a podcast. (ASPIRE has lots of resources for you at your fingertips.)
9. Learn about something else. You know, in your free time (lol), learn about something enjoyable or interesting. Remind yourself there is a big wide world out there. And we are not saying, read a big long book necessarily but listen to a podcast, read a couple of magazine articles, just make sure it is not about PANS or something related.
10. Re-evaluate therapies and therapists. You are lucky to find a provider that fits with your family and that is helping to make progress. But sometimes, things can get stagnate. Would a new provider offer something different? Or do you need to update goals with the current provider?
11. Get more sleep. Stop reading. Well, finish this article, then stop reading and go to bed. Don’t open another webpage. Don’t tidy up. Go to bed. Seriously though, even 15 more minutes of sleep a night earns you an hour and 45 minutes more sleep per week.
12. Stop apologizing so much. When your kid with PANS/PANDAS has a meltdown in public, pick up the pieces and move along (and maybe yell at the world in your bathroom). You can explain briefly but don’t over apologize. You know you and your kid are doing the best you all can. Period.
13. Make your mental and physical health a top priority too. Yes, we know, easier said than done. But if you don’t take steps to preserve your health, no one else will. Chronic stress can cause some scary health situations. Do something. Anything. Find a doctor. Dig out that old Jane Fonda tape. Find that yoga channel on youtube. Make half your plate filled with vegetables instead of carbs. Find a therapist. No one is saying to live like a monk or an Insta-influencer touting the latest diet. Instead, work on moving your body and supporting your brain and heart both physically and mentally.
14. Know your limits. It is okay to say no. It is okay not to fold that laundry. It is okay not to attend every event. Remember, we need to put boundaries into place because others often are not looking out for our limits.
15. Nurture thankfulness. Focusing on the hard and the sad is so easy. And, of course, you can’t make it go away, and you can’t avoid thinking about it. However, nurture your ability to find the good, the blessings, the moments you can breathe, etc. Maybe none of those things are PANS/PANDAS related, which is fine; that is expected. Instead, recognize the moments of kindness, peace, and love. Maybe a stranger held the door, perhaps a dog video made you laugh, perhaps you fixed a crisis at work, or possibly something good happened. Recognize those moments and embrace them; remind yourself there are still beautiful things in the world.
There are, of course, many other goals, practices, aspirations that you can make, but these fifteen will at least get you thinking. Remember, goals don’t have to be super specific, and you don’t even have to come close to perfecting them because we are just practicing.
Create a list of goals that will build you up, make you feel empowered, bring you peace and joy, and ultimately help you not just survive but live!
Download the Goals & Practices Worksheet
Gabriella True
