Monday, September 23, 2019

School Restraint From Every Side of the Fence (PANDAS Parent)

We've had a few great weeks, which in my PANDAS-parent mind just makes me ridiculously nervous for the other shoe to drop. What if school is actually horrible and no one has told me? What if my child is terrorizing the teacher, and I have no idea.

I watch them like a hawk, limit their diet, hold my breath when they say goodbye to me on the bus, and drive their teachers crazy with emails. I don't even recognize myself as a parent. When things are good, it's hard to relax. Can I trust that it is good? What if it isn't? What if this one moment of sassiness is the beginning of a downward spiral?

~~ . ~~ ~~ . ~~ . ~~ . 
Awhile ago I found myself in a situation at a school where the school team had to make a decision about how to manage a child's behavior. It was a tricky situation, and all of us who were responding were stuck between how we'd been trained to respond, and the newer philosophies of co-regulating with an upset child instead of holding firm on an expectation.

We sat there uncomfortably, looking at each other. We all wanted to "Ross Green" it, but it went against everything we'd been previously taught - and human instinct to "be in charge". We were the adults. We should be able to make a child follow the rules. We should be in charge. And after all, most of us had been in this situation before, where we'd been trained to use restraint on a child. 

Even in the moment, we talked through what would happen if we used restraint. It would only escalate the situation. No good would come out of it, other than making us feel like we had some sort of control. One of us would most likely get hurt, which would cause a chain reaction of events. The child, who was already terrified and responding in a fright/flight/freeze manner, would only become more traumatized. Restraint would forever change how this child saw school and the adults in it.

We took the time to talk through, and even though it felt uncomfortable to wait, we waited. We waited and breathed, in and out, catching our breath with his, until his breathing slowed down and his body calmed. We gained trust, and we slowly, gently, walked back to where we needed to be.

With every breath I matched with his, I thought of my own daughter. Will she have adults think through their responses as we had? Will her teachers be willing to put aside the "I'm in charge" immediate reaction and look deeper into the consequences of harsh responses? Or will they decide to impose their will, take a stand, and escalate it? 

In those moments, I was so aware of my own decision making process. It was uncomfortable to choose to wait, and yet I fully believe it was the right decision. Yet how many times have we not chosen to wait? We act fast, never wanting to be seen as letting a child manipulate or get away with something. There is something gravely wrong with the fact that sitting with an upset child felt wrong. This is what we, as educators, need to understand. Now that films like The Kids We Lose have come out and we are called to do better, we need to recognize that co-regulation goes against what we've been previously trained to do.

~ ~~ . ~~ . ~~ . ~~ . ~~
So, as a parent, I wait for the phone to ring, telling me to come get my out of control child. I pray that the adults with her are as patient and understanding as our team was for our child. If they are not, the consequences are dire - much as they are for children all over the country who struggle with restraint and seclusion. 

I have no indication so far that in kindergarten that she will require such intervention, but PANDAS has made me scared of what could come. I live in fear of PANDAS rage occurring at school, and not knowing how teams will respond.

Wednesday, August 28, 2019

First Day Worries

I found I couldn't write about the start of kindergarten, because my emotions were too big, and my thoughts were too scary. Having been in the school system for years, I intellectually know that everything should be fine - but I also very well know just how bad it can get when it goes badly. And, well... I knew there was a very, very good chance things could go badly just as easily as they could go well.

It was hard to put my feelings into words. When my oldest went to kindergarten, I was nervous, worried, and a bit emotional for her growing up. Normal parent feelings.

With my youngest, who now has PANDAS? I was terrified. Although many of my worries sounded like typical new kindergarten parent worries, they went so much deeper than that. In a way, I couldn't share my worries because people would say "Don't worry, mom, it will be OK." But those reassuring platitudes just don't help. And they only serve to further separate me - or all of us parents on the other side of the fence - with those parents are the "right side". I honestly don't think my husband and I slept at all the night before school started. You over there, on the "right side" of the fence - the one with the green grass - you've never driven up to the school, scared to go in to hear the behavior report from the day.

The first day of kindergarten should be emotional on the parents because it means your baby is growing up - not because you are scared of how your child might react in a group, and how the adults may treat your child after she reacts. This disease stole the sweet childhood moment from us.

My poor PANDA. The first thing she said to me when I picked her up on the first day was, "Mommy! I didn't go to the principal's office!" A wave of relief came over me, and I cheered out loud in the after school room, even though I hadn't realized that I was worried about that.

Her favorite books to listen to are Junie B. Jones, Ramona Quimby books, Roscoe Riley, and Clementine - all strong characters who mean well but end up in big trouble. So, I suppose it wasn't a big surprise that she thought she'd end up there. But I think her fear was deeper than that. She knows that she has trouble controlling her anger - and she knows how preschool went. I think she was just as terrified as her father and I were of what could happen in kindergarten.

So far, so good. She says she loves school and her teacher, and for the last two days we've seen some of her old personality come out. The confident, happy girl we had a year ago. So far, two days in, kindergarten has been good for her.

Knock on wood.

Just having the first two days behind us has been a relief. I'm sleeping better - focusing on my work better - my anxiety is calm. Yet even now, at pick up time, I feel it coming back. Will we have another good day - or did things go wrong today?

Wednesday, August 7, 2019

And then there are good days (PANDAS Post)

One of the hardest things I've found about the PANDAS world is the good days. It sounds crazy, but it's such a reminder of who are kids are underneath the PANDAS. We'll have weeks where it feels like our children are lost. And then, the stars line up, the antibiotics work, inflammation decreases, whatever they ate didn't feed the inflammation, and our children are back. Laughing, problem solving, being snarky, funny, sweet, trouble makers - themselves. The kids we know.

In the dark times, it can seem as though PANDAS isn't a real thing - that this is just life, and that we've made it up as an escape goat for our struggles. And then, we get them back, even if only for a short time - and we remember that this is a real thing. We didn't do this.

Which means, we can't fix it by punishing the brain inflammation out of them, or by being kinder, more attached, stricter, firmer, have boundaries, etc. that will make the brain inflammation go away.

Every night we sit and think about the day. "What did we do wrong?" "How could we have changed that situation to help her handle the rage better?"
"Did we do this?"
"What did we do to cause this?"
"Maybe if we have firmer limits..."
"Maybe if I quit my job and stay home more..."
"Maybe if we are more understanding..."

While I do think that we improve our situation by reflecting on our day to day interactions so that we become better at helping them emotionally regulate - we can go down a dark parenting rabbit hole.

And then there are moments when we see that we aren't crazy. We didn't do this (I mean, we can always be better parents, but can't everyone?) But we can't punish and limit away the PANDAS. When we see our kids without inflammation, we realize that we are doing OK as parents. They are great kids, and are learning to respect boundaries, be kind, and stay emotionally regulated just like all other kids are.

It's hard to watch them be who they are, knowing that they just missed weeks of this type of typical behavior. They can't get back these years that are being stolen from them by the inflammation. Why can't every day be like the normal days? The age-appropriate trouble maker days, when they act like every other five or seven year old kid?

But I hold onto these good moments too. Because we know they are there, and exist. The sweet, sister laughter from dinner the other night has carried with me all week.

Tinkering for All Developmental Stages

Over the last four weeks, I've been busy with a social group connected to a summer camp. It was my first opportunity to run this group within the camp setting, and I enjoyed every moment of it!

However, I quickly realized in my first days at the camp that my original plans were not going to work. The work I traditionally use with social groups did not hit this group of children in the right developmental capacity, nor did it interest them. My plans either asked them to access an area of development they were not secure in yet, or provided no challenge or active engagement for them. I needed another plan.

After watching them and what drew their attention, I finally realized what our focus would be - creating experiments for objects that roll!

We started making ramps for cars, and experimenting with just how high we could make the ramps, how fast we could get the cars to go, and whether or not we could knock over other objects with the cars if we aimed just right. (Melissa and Doug chunky piece puzzles are great for making "bowling" for animals activities).

Then, we transitioned into making marble runs. These were my absolute favorite. Initially, we took small tubes (toilet paper, paper towel, etc) that were split down the center and taped them onto a cardboard box. This worked great, but involved a lot of tape and made it more difficult to adjust when we realized there was a mistake. Out of sheer luck, I realized that the sticky side of contact paper is actually strong enough to hold up a toilet paper tubes. With that realization, I was able to tape the paper to the wall, sticky-side out, and then let the kids stick the tubes onto the paper. This made it much easier to experiment with different angles and designs, and allowed the engineers to make changes faster.

I love this activity so much that I've been using it with all of my clients - in and outside of groups.


Typically, the work we do when we tinker and create objects out of cardboard boxes, requires a child to have symbolic thought, or the understanding that one object can represent another object. Yet some children who are still developing this capacity might need more support to understand that their box can become a house or a school. They may make it, but do not fully understand what they are doing, making the activity not as meaningful, and their motivation not as strong.

Yet - with or without a strong sense of symbolic thought - everyone can engage in the excitement of rolling objects, whether they are cars or balls. We can roll objects down hill, push them up a ramp, watch how they fall off, and create obstacles that will change the way the object rolls. This is an immediate cause and effect experience.

Children with symbolic thought can understand they are making ramps for toy cars, and can add toy towns or storylines to their creations. Children who are not ready for that yet, can still be pulled into an activity of rolling the cars or balls.

This also becomes a back and forth engagement activity, if we (the adult or play partner) roll the ball/car to the child and they roll it back. Each time we can change the speed, path, or method we roll the ball/car.

Once a child is engaged with creating obstacles for rolling items, I can transition them into making a marble run. (Some children do not need the transition - they can start with the marble run immediately).

Creating this lets us work on forward thinking - what will happen if I put this tube here? - analyzing problems - well, the ball just fell, I wonder why - identifying possible solutions - what if I move this closer? and continued problem solving.

Through this activity I have heard such great language in terms of "that didn't work, I better try again." "ACK! This is frustrating. OK, if I have space to think, I'll figure this out." and "Hey! Something isn't working.... we better try again!"

The activity allows for just enough frustration that a child can work on experiencing that feeling of plans not working, while also practicing finding additional solutions.

I love when I find an activity that meets children where they are, allows for shared social problem solving, practice in emotional regulation - and - is an activity I love to do too. (No really, you have to try it. I have to sit on my hands so I don't take over the creation myself.)

Monday, July 22, 2019

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?

Friday, July 19, 2019

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.

Thursday, July 18, 2019

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.