Sunday, July 14, 2019

News From the Other Side of the Parenting Fence (The beginning of sharing my family's journey with PANDAS)

It's been a long time since I've written here. 5 months in fact. A lot has been happening within those last five months, and life has been busy. But I realized lately that something is missing from my life- and it's my ability to write and process my life. Time, of course, has been a big issue - between seeing clients, running groups, working at a school, and parenting my own kids there just isn't time to pull out the computer. But also, I've struggled with how and if I should share my story because as a mom, it is no longer just my story - it is the story of my family and my children.

And yet, I keep finding myself composing blog posts in my head, and contemplating how to share my inner thoughts, because I know I can't be alone in the parenting struggle. What's more - my current parenting perspective has shifted so drastically that I want other teachers and professionals to hear what it is like on this side of the fence.

Welcome to the Other Side:
So welcome, over here, to the other side of the fence. The one where we avoid eye contact with other parents because we don't know what their child says about our child. The one where we dread going to pick up our child from school because the teacher's report will make or break the rest of our day. The one where we know those staring eyes see us and say, "If only you were a better parent."

How did I end up on this side of the fence? You'd never tell from my instagram pics of my smiling girls. If you are facebook friends with me, you may think my daughter's sassy sayings are what's brought us here, but it's far from it.

I'd say my family climbed over this fall, each day climbing down one rung. Of course, I'm familiar with what happens over here, because I've stood on top of the fence and talked down to the parents on this side for years. I've listened sympathetically, offered support, suggestions, and yet, really, had no idea what these parents were going through.

In the past year, both of our girls have been diagnosed with Pediatric Autoimmune Neuropsychotic Disorders Associated with Strep (PANDAS). Ironically, pandas are some of our family's favorite animals, but we're slowly coming to hate them.

This disease -when the strep bacteria crosses the blood brain barrier and the strep antibodies start attacking the basal ganglia of the brain - is horrid. There are no other words to describe how our children have been eaten up by the monster that is PANDAS. There are fits of rage, anger, OCD tendencies, tics, separation anxiety, heightened sensory sensitivity... the list goes on and on. Yet we are some of the lucky ones. Our pediatrician recognized it early in both girls, and got us started on our treatment quickly. Many other PANDAS stories cross over years and years of fighting for some professional to recognize the disease. It is still considered fairly controversial and unknown.

Not My Journey Alone
Although writing is what I use to process my thoughts and calm my own brain, I struggle to write about our journey with PANDAS. Because it's not just my journey to describe, but a journey my family is on together. I'm not sure what my girls will think when they read this years from now - if they'll appreciate looking back on this hard time, or if they'll feel guilty for the pain my husband and I feel (dear girls, please - you have nothing to feel guilty about - I'm not implying that you should), of if they'll be upset by the invasion of privacy when they did not have a say.

But I don't want to hide our journey, because it is a journey. Last year, when my husband had cancer, we didn't hide anything. We healed because we let people in, we allowed them to help us, and we were prayed for and loved by our community. When you have a disease with neuropsychotic in the name, there isn't a lot of sharing, praying, and casserole bringing. It's just not done.

But we should be able to share this. My girls have done nothing wrong in catching this disease, and as we fight to treat it we have nothing to hide. It's hard, and awful, and not easy to describe.

I'm not going to share the ins and outs of what happens in my house or how PANDAS manifests itself in my girls. I will share my own struggles, thoughts, and realizations as I move from being a parent of "sweet kids" to a parent of "those kids" in the eyes of others. I'll share the fight to advocate for my children's needs, the desperate need to be understood by some school official or doctor, and the defeated moments of feeling that this disease has eaten our family. And hopefully, I can share success too.

Are you here, too?
If you are here, on the other side of the fence, watching the other parents share their child's great report cards, and sports achievements, friends, artwork, and wonderful reports from school - I'm sending you a hug. The "right" side of the fence always seems to be competing. They are so proud of their kids over there. We're proud of our kids too. Really proud. Yet, it's not like we can drop reading levels or test scores. "Yeah, so even without Motrin to decrease the brain inflammation, my daughter self-regulated and was able to stay calm enough to sit on stage even though she didn't sing." I'm SO FREAKING PROUD OF HER.  "My rock star daughter didn't jump into the pool right away at the swim meet, but once those other swimmers were halfway down the pool she got in!! She didn't walk away! She FINISHED HER RACE!" I mean - totally pride. She's not a quitter. And today - she hugged me and went to school - no fighting, clinging, screaming or crying. WIN.
Not facebook worthy, but a win all the same.

I'm sharing this story because as a teacher, both in special education and general education, I had no idea what it was like to be on this side of the fence. I thought I did, but I didn't. Because people on this side of the fence don't talk about it, don't share it, and often get blamed. As though they are too lazy to climb over the fence and join the "good families" on the other side. Trust me friends, now I know, it's not laziness. My friends on this side of the fence in the corse, high grass - we are fighting for our lives.

1 comment:

Jenny said...

I have been there too. All those years of trying to figure out what was going on with our girl, even once we understood she had an anxiety disorder, we still didn't really know enough to understand how that was impacting her. I look back with such shame and regret for how we parented and what we allowed to happen to her in school.

I am so glad your doctor figured this out quickly. I hope that makes a difference in how this all goes for your girls. You and your husband are amazing people and I am continually astounded by what you both navigate with grace and love. If there is any way we can be of help, please, please, please let us know. For now, we're sending so much love your way.