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.

What's Behind the Disproportionality in Suspensions and Expulsions

Over the last few years I've found myself attending any presentation at special education conferences that addresses research behind the disproportionality of students of color and disability are suspended and expelled in the early years. As someone who follows the data on this trend, as well as a teacher in the schools, I frequently wonder what is going on. I've never been in a school where, at any given moment, I watch how a teacher interacts with a child and think "Oh, that teacher is being racist." I truly believe the majority of teachers out there have no idea their actions may be contributing to the broader statistics, and that every teachers acts in the moment based on what she thinks is best.

This belief makes this problem difficult to fix, because it means we can't just tell people "Hey, stop discriminating against kids." First we have to figure out what is causing the discrimination in the first place.

One presentation I attended this winter at the Council for Exceptional Children's Conference in Indianapolis was on this phenomena. The researcher looked at preschools in her area and examined their teacher and administrations specific beliefs and practices around suspension and expulsion. She was hoping to get to the bottom of what's happening in these schools when preschools make these decisions.

One trend she found deeply resonated with me, because I know it to be true in practice. Much of the time, teachers and directors use out of school suspension or expulsion to address the child's family, not the child. Although these teachers are directors realized that these practices do not work to change the child's behavior, they did feel that they could get the family's attention or force the family to realize a problem with the child through the suspension and explosion practice. She also found that the teachers and directors shared that despite this belief, they often saw that it rarely caused a change in parent behavior.

I've certainly seen this happen in my own world. There have been times parents refused to acknowledge a child's misbehavior in school, blamed us for their child's behavior, or refused to problem solve with us to find a solution. I've seen principals (and agreed with them in the moment) regrettably decide to suspend a child only because it would force the family to come in and talk with us. It happens.

Now that I'm a parent of an active child who sometimes has difficulties controlling her emotions in preschool, I've had the opportunity to be on the other side of the "that child" table. I've been lucky to work with teachers who respect my opinion, and allow me to talk through how we can problem solve this behavior in school. As a teacher I speak their language, so I know what they are leaving left unsaid. I also know how to reframe my emotions and make suggestions that build a team between myself and the school - instead of emotionally reacting and telling the school where to stick it. But I've had 16 years of practice in having these conversations. I also have a cultural fit with the school, and support the values they are hoping to instill in my child. And even then, I get off the phone feeling slightly sick and panicky.

I cannot control what my child does at school. We spend a lot of time at home talking about calm down strategies. We put structure and rules in place. I've taught her conscious discipline breathing techniques, and sent her to school with visual reminders of how to use them. We've practiced using them. Practiced taking a break. Practiced using our words. But when she walks in those doors there is nothing more I can do. And no matter what the school says, I feel helpless and judged.

So think about being another parent - one who attended school in an inner-city, whose parents may have received similar "there is a problem with your child" phone calls. A parent who learned not to trust the system, or any of those teachers who look like they mean well. If there is no trust, and all the parent hears the school say is (even if the school says it as nicely as possible) "Your child is ruining my classroom" or "Your child doesn't belong here." How are you going to move forward? Do you trust the teachers? How do you begin to problem solve with these teachers?

And let's be honest - not all teachers are willing to listen to parents and get ideas of what works at home. In talking with parents we often use a top-down approach. "Your child needs to X. At home you need to enforce the limits. Have rules. Establish routines" etc, etc. Just saying that implies we don't believe they have rules and routines at home.

Let me tell you - when you come to that table for the behavior talk - it is nearly impossible to not feel judged. And my daughter has the nicest, best, most amazing preschool teacher in the whole world.

What about parents who aren't from this country? Whose culture was to let the school handle it? To draw a line between school and home?

Or families whose rural backgrounds are built around a child's ability to work and farm, and not sit on the carpet in schools and listen to a book?

What about families with two working parents, trying to make sure they can pay the bills, save for college, and somehow get their child to sports activities after school? They barely have time to fit their own lunch into their daily schedules. It may not be that they don't take the school seriously - it's trying to take care of their child long term verse short term.

The realization that most of these suspensions are originally designed to be wake up calls for families stuck with me. We have a problem in how we are connecting with families, how we build a team between ourselves and the parents. And some parents may scare us a bit. They may be scared of us, and therefore come on too strong or too tough - which scares us. It may be that we don't treat all parents equally, and we make assumptions of what goes on inside children's homes.

Hearing this research studies findings that teachers and preschool directors acknowledge that suspension and expulsion do not change behavior, but that they use it to communicate with parents needs to be a wake up call for all of us. We need to spend time thinking about our perceptions of parents and re-think how we build partnerships. We also need to spend more time thinking about what we can change in the classroom to meet the needs of these kids, instead of wanting the home environment to change. Whether we approve or disapprove of the home environment, it is rare that we are able to actually change what is happening outside our classroom walls. So let's dig deeper into what we can do ourselves.

The Connections Between Suspension and Teacher Mental Health?

The Division of Early Childhood conference is wrapping up, and I am still mulling over one of the statistics I heard at the first session I attended: Teachers of children who are suspended are more likely to report feeling depressed. 

This sentence tells me so much, and has been rolling around in my brain as I attend all the other sessions on engaging students, inclusion, and positive behavior practices.

1) Suspension is about us, not the kids. We suspend kids when we don't know what else to do in a specific situation. We suspend when we feel helpless.

2) Teachers who are in the classrooms where kids get suspended are not in a good place, most likely due to school structures in place. I'm making a huge jump here, but I suspect their depression comes from being overworked, stressed, and feeling helpless with what's going on in their classrooms.

3) We can talk about good practices all we want, but until we have teachers in a place where they mentally feel they can implement best practices, we aren't going to make changes.

4) It's not just about our relationships with kids - it's about our relationships with teachers.

5) Why are teachers feeling depressed? There is so much on teachers right now. I don't know what change needs to be made, but I truly believe if we want to improve education for all kids we have to make a massive practice shift in the field. What we're doing isn't working for kids, but it isn't working for teachers either.

In another session about cultural responsiveness an audience member commented that perhaps teachers with young families should pause for teaching for a bit, because it is too hard to balance having a family and being an effective teacher. This hit me in the stomach, because in so many ways it is true. The demands we put on teachers make it hard to balance family life. Expecting a teacher to go into the home of students after working a full day is seen as normal for the younger teachers without families (as long as they don't have another job...) so when mothers or fathers start to push back on the extra work they are seen as "ineffective". Obviously we don't all believe this, but the statement reflected a truth.

We expect effective teachers to dedicate themselves and their identity to the job so that they reach all kids and families. Once we see our self-worth through the lens of our teaching job, we are shaken to the core when we have a challenging student. We turn inward and decide we aren't good teachers, or we turn outwards and assume there is a problem with the student. Neither assumption helps anyone.

The teaching profession AND how our culture approaches the profession encourages us to connect our identity to our job. We make salary and time sacrifices for our students and the public tells us we are heroes (while not matching that statement with true respect).

Something has to give. Telling teachers to practice "self-care" puts just another item on their checklist, and makes them continue to feel like a failure when they don't get to self-care in the midst of all they are being asked to do.

I don't know what the answer is. Individually we can put up boundaries and provide quality instruction, practices, and relationship building experiences inside those boundaries. I feel there needs to be more system shifts here, but I don't know what they would look like.

Presuming Competence with Our Colleagues

I’m two days into the three day Division of Early Childhood conference and I have to tell you, I am EXHAUSTED. These first two days have been packed, with limited time between sessions to process what I’m hearing. It’s exciting to hear about the current work in the field, what is about to be published, and what research questions are being pursued. Yet it also feels a bit like it’s impossible to keep up. So much is swirling through my head right now. 

It’s always fascinating to talk to practitioners across the country to hear how practices, trends, and terminology varies from place to place. Because we typically work within only the constructs of our school or district, we often assume that what we are being told is best practice is what is considered best practice everywhere. Or, to be even more specific - We often assume the terminology we use to describe best practices is the same terminology used everywhere.

Even though practices may look the same, what I find the more I talk to people across the country is that the terminology we use to describe those practices is not. It may change depending on what program or philosophy our county has invested in, what trainers we’ve seen, or the background of our university professors. 

The greatest problem I’ve seen in this is that we make assumptions that we are right. The terminology we are using is what describes one certain practice, and that when an educator doesn’t show that they recognize a certain term or researcher, that the educator is somehow not as good as us. “They don’t even know what X is…” is a phrase I’m not unfamiliar with. 

I am continuously shocked by how big the field is, and how many different studies exist around similar topics. And it should be this big. We need a spectrum of ideas, and research studies again and again proving techniques that work and don’t work. It keeps our profession inquisitive and making sure we are serving the needs of the kids around us. 

We talk a lot about presuming competence in our students, but we don’t always do it with our colleagues. We assume that because a teacher doesn’t recognize a particular term or practice, or that a teacher approaches a behavior in a certain way, that the teacher isn’t as good, competent, or informed as we are. 

It is exhausting to attempt to keep up with the research, and to try to understand how certain practices overlap. So let’s be kind to each other. Let’s listen to one another’s educational backgrounds, and learn more about what practices we bring to the table. In order to collaborate effectively, can we openly talk about what each practice, theory, and “research based best practice” brings to the table, and whether or not it will be effective in this particular situation? Can we stop implying “I”m right because research says ….” And instead engage in genuine dialogue over practice and research?

These are scary conversations, because they often imply that the practices we’ve been taught - the ones we’ve been using for years - aren’t always “right”. But here’s the secret - nothing is ever “right” in education. When we get caught in “right and wrong” we stop responding to the kids and critically thinking about what’s happening in front of us.