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.)