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Having Realistic Expectations of Our PANS Kids/Teens

Jul 09, 2022

Here's a good story that I posted on my Facebook group about how I worked on expectations with my PANS daughter.

Some of you know that my 18 year old PANS daughter started a job as a camp counselor almost two weeks ago.

This was a huge step for her.

Her anxiety and OCD reared its head so intensely for the first few days of the job and she wanted to quit the job multiple times each day. I did NOT expect the anxiety and OCD to be this strong!

Luckily, my daughter had some ability to recognize her anxiety and OCD from the work we have done together. She used her tools (she DID not want to, but she did) and worked VERY hard at exposing herself to the anxious and intrusive thoughts that came up for her about taking care of the kids at camp.

It was very challenging for me to figure out if this exposure was too large for her 😲. I used my PANS parenting tools to regulate myself and work through the challenges one moment at a time, one day at a time.

During the first week, we began to realize that my daughter's boss had unrealistic expectations of her and her co-leader. My husband and I helped her send an email to her boss explaining her concerns (she has been doing exposures on sending emails to teachers for the past 2 years when she was overwhelmed with schoolwork, so she had some confidence doing this).

Her boss responded positively by bringing in help and support for her and her co-leader--success! 💃💃

I was relieved when we got through most of the first week and she began to like her job a little bit!  More success 💪

Then on Thursday of the first week, I found a bite on her and it developed a bullseye around it 😭. I found myself going into my old thoughts, "Why do these kinds of things always happen to us!?" "Nothing ever goes our way!" "I'm done!".

I felt angry and felt defeated. 

Again, I picked up my PANS parenting tools (these tools are in my upcoming course by the way). I allowed myself to have my feelings, and I didn't judge myself for this sadness or frustration. I allowed my daughter to be sad and angry too. THEN, I moved forward into action. I called our lyme doctor and we got the guidance and treatment we needed (only about 10 phone calls during my work day to get the answers I needed. The LLMD started my daughter on antibiotics and she began herxing. She got through the first part of last week, but then began to feel really crummy.

She stayed home from work yesterday and she may need more days off if she is still feeling badly from the herxing. And we will need to monitor how this bite affects her.If this weren't enough to deal with, we also navigated a very close COVID exposure from a friend which was completely unexpected. There were also other multiple issues that went on for our PANS family such as a trip from NY to DC to see the lyme doctor, conflict between my husband and myself about how to manage all of this, and in-laws that are not supportive and create chaos for us).👎

So it can be a very bumpy ride when we aim to identify realistic expectations of our PANS kids/teens and of ourselves as PANS parents. We need tools and support to ride the waves during stormy weather.

I didn't realize that my expectations of my daughter taking on this job were really high. I need to adjust those expectations. She may need to miss days of work due to illness and/or stress. My husband and I can use tools we have learned from marriage counseling to recognize how the stress triggers us and affects our relationship. I can also recognize that I need to have realistic expectations of myself about how much I can get done (i.e., finishing up this course!) during these high stress times.
 
We are also making sure to celebrate the accomplishments--how well my daughter exposed the anxiety and OCD and the resilience she had to rise up to repeated challenges. My husband and I are giving ourselves credit for how well we navigated this challenging time despite our differences (um, quite a few arguments about that).