Welcome to the Upside Down - PANDAS Post

Most people in the special education world - parents, teachers, or therapists - are familiar with "Welcome to Holland". A short essay on how when you think that you are headed to Italy as a parent along with everyone else, but instead you end up in Holland. Holland has a whole different language than what you prepared for, different expectations and experiences, but it's still a wonderful place. Just different.

I used to love Welcome to Holland. It was a beautiful way to look at the world.

With PANDAS, I think it's more like "Welcome to the Upside Down" straight out of Stranger Things.

You are in Rome, hanging out in Rome, loving your time there, when all of a sudden, you aren't. It looks like Rome and you can still see remnants of Rome, but instead it's all dark and cloudy - Rome with decay. There is screaming and crying and its cold.

There are portals back to the real world. Portals through antibiotics, gluten, sugar free, and all sorts of theories - the mold portal, the no chlorine portal - steroids and Motrin portals. Which one will work? Which one is worth the journey? Some offer sort glimpses into the real world, but in the end you just get pulled back into the Upside Down.

Yesterday, my youngest and I went to a birthday party for her classmate. I'm apprehensive going to these things because I'm never sure which world we'll be living in. The happy, delighted, playful world, or the upside down - screaming, crying, clinging, angry Upside Down.

I could tell my daughter was fighting to stay upright. She was hesitant, avoided good friends who might make loud noises and stayed close to me. At one point - honestly the cutest moment in any child's birthday party ever - the birthday girl began singing the Star Spangled Banner to kick off the party. Everyone joined in at this sweet moment. Except my child. Whose hands were on her ears.

I held my breath the whole time, worried we'd have an explosion and screaming. She held it together - I think she was just protecting herself from a possible sensory overload. But the optics- not so good. Later, the family posted the video on facebook and of course there were comments about the girl with her hands over her ears. They were funny comments - really - so many possible captions - but so heartbreaking at the same time. I started to comment with an explanation about sensory needs and then just stopped. How do I explain that we have one foot in the Upside Down and one here with the rest of you, and the hands over the ears are part of our fight to stay here?

The negative Impact of teacher language

"I know you all are old enough to know better!"

"Do as I say 'cause I know you all can!"

"Do I need to take all these books home with me? I can't even get through one page without you interrupting. Look at this ridiculousness."

"Don't touch my things!"

My heart is breaking. This isn't what I heard adults say to children - this is what my daughter is yelling at her stuffed animals while playing school. This is apparently what she's being exposed to.

"You guys want to disrespect on your first day of fun stuff?"

"Like yesterday was a good example, but now you guys are just yelling and things like that. You all are like animals."

It just keeps going. Those stuffed animals are clearly having a tough time in school.

"You guys should know what to do."

"You guys know better." 

"I'm going to give you the special treat after, but only if you are good."

"Monk-monk, I don't want to hear a word from you."

"Whose book is this? Just left over here? Well, bye-bye your book honey! I guess you don't want it anymore you just leave it around."

So many of these phrases are ones that I hate hearing teachers use. They go against Ross Green's statement of belief, "Kids do well if they can."

And they aren't effective. These statements don't change behavior. They just make grown ups feel like they are in control of the situation, and remind the grown up that they are bigger than the child.

Last week my daughter came downstairs sobbing in the middle of the night. She shook her finger at me and shouted, "YOU ARE TEACHING ME BAD HABITS! IT'S ALL YOUR FAULT!" The next morning, she wouldn't talk to me about it, and wouldn't share where she got that idea from. But I suspect it was either said directly to her, or she overheard it from a teacher.

Comments like that - even something as simple as "In your house you may put your feet on the table, but here we use manners!" serve to build a wall between home and school. They send the message to the child that whatever is going on at home is wrong, and only school is correct. For many families - this is also a culture divide, where a white teacher is telling a child of another race that their culture is wrong. That's clearly not the case here, but the judgement I feel from the school is all the same.

It was a rough PANDAS day. At the end of the day my oldest put her head on my shoulder and said, "I wish there was no such thing as PANDAS."

Me too, my love. Me too.

Morning Drop Off - PANDAS Parent

There is nothing like a rough daycare drop off to just rock one's day. My day began with a child refusing to get out the car, being carried into the school, and screams of "STUPID MOMMY!" as we passed the babies and toddler rooms. Lots of big eyes on little children following us as we walked past.

Before PANDAS I never realized how awful the concept of school can feel. Knowingly walking away from a child in a rage and leaving her for the whole day with other adults goes against every parenting instinct in my body.

I've been one of those professionals distracting, comforting, and holding the enraged child, and so I know that usually the child calms down after the parent leaves and all is well. Usually. When my children were infants my daycare provider used to text pictures of their happy faces ten minutes after I left so that I would know they were already happily engaged in their day. What I would give for that type of tearful drop-off anxiety again. That was typical - the kind every child goes through.

Now, as I leave, I have no idea if the rage that was directed at me will now be directed at her teachers or friends. Will the Motrin kick in and reduce the brain inflammation, or will she continue to hold onto her angry feelings?

If she remains angry, how do I know the adults will react appropriately? Us PANDAS parents know just how much rage our children can incite in us, and we love these kids and know what's going on. With teachers? How do we know that our child's behavior won't bring out the worst in the teacher? How can we be confident that our child won't be treated harshly, physically picked up with too much force, or yelled at inappropriately? We know just how bad our children's behavior can be - it requires a very calm adult to react in a way that will allow for the child to become calm and develop new skills from the experience. How do I know that my child won't be learning to identify herself as a "bad kid" from how the school reacts to her behavior?

I don't. I have to trust. Whether or not trust is the right answer is unknown.

I pull my car out of the parking lot, and send prayers of strength to my child's teachers and prayers of calmness to my child. Please, please let today be a good day. Let today's anger dissipate and let there be the giggles, happy play, and love of school that is typical for preschoolers.

PANDAS Parent enemy of the week - SUGAR

I stood at the Lollipop 8 and under Swim Meet on Sunday evening and literally felt like sugar was attacking me. Everywhere I turned another piece of sugar popped up to tempt my children. It was, after all, called the Lollipop Meet, and they were given a lollipop after every race they swam. What did I expect was going to happen? On top of the lollipops, there was candy, snacks, snow cones with marshmallow cream topping... the list goes on and on.

Why does so much of summer depend on sweet treats?

Don't get me wrong - I have a huge sweet tooth myself and can barely resist anything remotely filled with sugar. And while I've always worked to have my girls eat healthy food, I've accepted a balance. Before PANDAS I knew that a snow cone, a lollipop, a cupcake, wasn't going to hurt them. They are great at eating fruits and vegetables and so sure - indulging in sugar every now and then is a part of childhood. 

Then, PANDAS hit, and in my search for answers to how to survive and recover from this disease I learned that it is a good idea to go sugar and gluten free. We put it off as long as we could, but after we realized how uncomfortable we are with our kids extended run of antibiotics, we decided we needed to try the dietary restrictions too.

We let the girls have one last hurrah on our family beach trip - Lucky Charms, ice cream, cookies, pizza - even soda - gasp. Then we came home, and over the last week have been cutting back significantly. 

It. Is. So. Hard.

There is sugar lurking everywhere. And don't even get me started on gluten. 

We've given ourselves until the end of the month to be fully gluten free, so right now we are limiting what we can and then making notes of the changes we need to make in the future. Bring our own gluten free and sugar free treats to birthday parties? Bring our own gluten free buns to swim meets and picnics? Not eat hot dogs because apparently they can be stuffed with gluten filler?? Life is about to get even more complicated. 

We took the girls to Whole Foods and let them get excited about choosing very exciting gluten free snacks, and the best gluten free bread there is. My husband silently cried at the dollar up charge on all the gluten free products, and I tried to stay upbeat as I sold the cauliflower cheese crackers. Mmmmm! Delicious!

The girls were appropriately excited. The next morning they peered at the dark, dense bread with hope. It looked so good compared to the other options. My oldest took one bite and burst into tears. That bite represented the taste of her new reality, and it wasn't a good one.

So Sunday night I felt like a warrior, bravely fighting the sugar wack-a-mole game that was the Lollipop meet. We evilly collected their lollipops after each race and promised them they would get to eat them at another time. (In the future we'll bring a sugar-free alternative, but we are still new to this). We calmly denied any of their requests for the sugar-filled-happiness snacks we used to let them buy at concessions, because, after all, it was a swim meet. I remember eating jello mix from the box at swim meets in my childhood. Swim meets = sugar.

Toward the end of the meet we found the five year old huddled on the side of her lounge chair, her head turned and tilted off to the side so we couldn't see her mouth. Her shoulders were slumped over in pure relief. One look at the back of her head told us exactly what she was doing. She'd snuck a hit of lollipop. 

The removal of the lollipop wasn't a pretty sight, nor was post-removal scene as the entire shallow end of the poop stared at the show we were giving them. To my daughter's credit, I'd probably react the same way if I'd had a lollipop taken out of my mouth. Not that she should have had it in the first place, but it wasn't a good situation for any of us.

Sadly, we've seen a great change in their ability to recover from stress now that we've limited sugar, so we're going to keep at it. (Except at night when I'm secretly eating nutella out of the jar, hiding in the laundry room when no one can find me.) 

Oh hello, ten pounds (PANDAS Mom Post)

Oh hello, ten new pounds. Nice to meet you. (I lie through my teeth). I'm desperately hoping we can keep your growth to a minimum, but you came on so fast that nothing feels guaranteed. It says something about this disease's impact on our family that I didn't gain any weight when my husband had cancer but now... 

I was initially shocked by your appearance, but then I remembered all those late night moments, standing in my kitchen, not even tasting the food. One more spoonful of Nutella will clearly fix everything in my life. Apparently this winter and spring I did an excellent job of eating my feelings.

I'm not confident that I can get you to disappear anytime soon, as that would take a cognitive load that right now is devoted to tracking my children's own nutrition intake, medication, and behavioral patterns.

And someone has to eat all the sugar and gluten-filled food that we no longer let our children eat.

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.

PANDAS
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.