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A hypothetical note to parents

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[Ed note: I started to write this using “I” instead of “We”, but it didn’t feel right. We do everything as a team, we have been a team for years, and despite not having asked everyone if they share these thoughts, I am nearly certain that they do.]

We are in Week 3 of our 7 week program. We see it every summer – Week 3 is when things shift. Kids are getting to know their peers better, the novelty has worn off, group leaders are getting into the nitty-gritty of social thinking development, kids are feeling more comfortable around us and in our setting, and, as we always say each year, “The honeymoon period is over.”

So we start seeing behaviors that we might not have seen the first two weeks. Refusal, noncompliance, anger, meltdowns. And we aren’t bothered by that. We expect it. We know that in a lot of ways, it demonstrates the kids’ comfort with us and our program. They are being themselves, allowing for vulnerability, and letting us step in and guide them through it. 

Sometimes a meltdown turns physical. We know that. Please know: you do not, ever have to apologize for your child’s meltdown or physical aggression. We know the difference between a tantrum and an autistic meltdown. We know this is a meltdown. A neurological storm, a complete inability to do anything except ride it out. Please know that we don’t think your child is being purposely defiant or difficult. We get it. We don’t think any different about you or your child post-meltdown. We aren’t upset if papers got torn up, if the walls were colored with markers, if water was purposely spilled. We are okay if we get scratched or pushed. Please know that in those moments, our focus is in no way anger or hatred toward what is going on. It is purely compassion. 

There is something powerful and beautiful about every single moment we spend with your kids. In the midst of a full-blown meltdown, complete neurological storm, a level 5 on the “volcano,” the powerful part is that we are able to be there for your child. To help them stay safe and regulate. To let them know, usually nonverbally, that they are not alone. That we are there, that they are okay, that we understand. It is powerful and beautiful to be with your child at his most vulnerable moment, when he has lost complete control of his words and body – and to know that we are entrusted to be his compass and guide him through the storm.

The moments we hold onto are not the aggressive ones. It’s the moments when we see him take that first deep breath, after an hour of shallow ones. When we can see the tension leave his face and body. When we see his core, true self, start to emerge again. When words return to him. When he calmly asks for a drink of water. When he looks right at us and asks us to please help him put his shoes back on. We don’t hold onto when he was screaming at us, telling us how much he hates us. Instead, our radar is on the moment when he is calm again, and happily asks us if we want to join him for ice cream. 

Please know that. We love what we do. We don’t judge. We adore your children. We are honored that you have entrusted them to us. 

The time that I didn’t (fully) pass out

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The following is (as usual) completely unedited, completely unplanned, and a complete stream of consciousness. It also mentions fainting and throwing up. Just saying.

I have almost a perfect record of having a vasovagal syncope (i.e. fainting) during any type of medical procedure. Procedure isn’t even the right word, I have (thankfully) not had that many procedures. More like: TB tests, blood draws, chiropractor appointments, gynecology appointments….you name it, I have probably fainted or thrown up during it.

So when I went to the doctor’s office today for an examination that involved a scope up my nose and into my sinuses, I knew the odds were not in my favor. As the doctor explained to me about the lidocaine and the scope, I already felt my body start to struggle. I told the doctor about my history and she very nicely said that it would be no problem, that she would have ice packs ready and she would recline my seat a bit. So I did okay at first, she was reminding me to breathe, and I was, but there’s just a stupid something that gets to me as soon as my brain registers “Holy crap there is something inside of me/going on with my body and I can’t control it and it’s gross/weird/not cool” and I felt that all-too familiar tingling of my hands and my toes and kind of at the back of my throat. I tried to breathe through it but the thoughts of “Oh my god what if this happens what if I pass out what if I throw up will I make it to the bathroom and oh my god this is making it worse I’m going to go down what do I do” kept coming, so for the first time IN MY LIFE, rather than trying to fight it on my own (because, you’d think after 987123987 times of this happening, I would know that it’s the anxiety about it happening that makes it even worse, and when I try to make it stop happening, it only makes it happen sooner), I was honest.

My eyes still closed, I calmly said, “I am going to throw up.” The doctor put a trash can next to me and very calmly replied, “Okay, go ahead right to your right.” She then reclined my seat even farther back so my head was deep below my heart, and she got me ice packs for my wrists and a cold cloth for my head. And there I was, allowing myself to be as vulnerable as possible, lying in the chair with my eyes scrunched shut, trying to breathe, cold packs all over me…..and I accepted it. I accepted that this is where I was, and I accepted that my vision was going dark and I knew I was safe and I knew that if/when I threw up or fully fainted, it would be okay, because I didn’t have to be in charge. I didn’t have to fight it.

I’ve never done that before. I’ve always fought it off, then desperately announced that I needed a bathroom, barely making it to the bathroom before my stomach empties and I pass out, then having to get myself to the sink, clammy and sweaty and exhausted.

I don’t know why this time was different. But I don’t think it’s a coincidence that the very first time in my life that I was able to stop it mid-way, before I fully went into darkness, was when I was proactive, and honest, asked for help and told it like it was.

And ten minutes later, I sat back up. And I drove home. And I was tired, and drained, but I was okay. It was so empowering to be able to stop it mid-way for the first time. And so empowering to be so vulnerable and have it be so……okay.

Conversation

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“I love gymnastics,” she says, out of nowhere. “I want to try it again, I quit last year. It was too late at night.”

“I get that,” I say. “I get tired on school nights too. What is your favorite part of gymnastics?”

“The exercise,” she replies. I nod my head. “You like to be moving?”

“I want a flat stomach,” she responds. My heart skips a beat. No no no no. Please, no.

Tread carefully, I remind myself. “Hmmm” is all I can manage. She continues, lifting up her shirt an inch and pinching her stomach. “I do not want this icky fat on me,” she declares.

I think. She’s a wonderful, insightful, unique, verbal, chatty girl. She’s also 15. And a teenage girl. And on the spectrum.

I choose empathy. Even if my words are not processed, I know the feeling will be.

“I get that,” I say. She looks at me. “But you know what? It doesn’t matter. It doesn’t matter if there is fat on your stomach, or anywhere else.”

She is listening.

I continue. “I sometimes have thoughts like that. Many people do. But I remind myself… ”

She interjects, “It does not matter! You are beautiful! It is what is on the inside that matters!”

I know it’s a script. I don’t care. The fact that those are the words she is pulling, in this moment, means that hope and belief and self love are all what she is trying to convey, and convince herself of.

“YES” I answer. And she moves on to a different topic, done with this conversation.

It’s a start.

To the mom I met last weekend

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Hi. I’m so glad that Charlie* is coming to our summer program this year. I’m so glad you brought him to the meet and greet a few days ago.

I know you were worried. When I sat down next to you, while Charlie was with his summer group and summer counselors, you gave me a tense smile and said, “I’m so embarrassed. He keeps saying bathroom words.” You went on to explain how awful he was behaving. That no other kids were saying poop or fart in response to questions. That during the year he had worked with his speech-language therapist who had provided him with social stories that were effective, and the bathroom talk had been extinguished. That you were petrified that it had returned.

When I gave you a smile and told you that this was SO common, that I had seen it a million times, I wasn’t trying to make light of your fears. I really was telling the truth. When I told you that potty talk doesn’t make any of us bat an eye, I was telling the truth. When I told you that it makes perfect sense that he’d resort to potty talk today, I was telling the truth. Charlie is 5 years old. Five year olds love potty talk. It’s silly and goofy and it’s a fun way for them to make each other laugh and connect. Charlie also happens to have an autism spectrum diagnosis. He has language, but anxiety and fear prevail over language. He was put into a new environment, with new kids, and new staff, for the first time all year. That would make ME nervous! So Charlie turned to the words that are easy for him, that he knows, that he could easily access. And those happened to be “poop” and “fart.” I promise you, this is the truth. I promise you, not a single one of us ever thought, or even will think, that he is “poorly behaved,” “trouble-causing,” or “disrespectful.”

When you left and told me, “Charlie said he loves this place!” I was thrilled. That was our goal for the meet-and-greet. To get each and every kiddo feeling like, yes, this is a place they will be safe and have fun this summer. You then followed it up with your disclaimer and fears, “But, he didn’t listen to a word anyone said.” My reply: “But he sat with the other kids. He kept his body in the group. He kept his body safe. He shared some laughs and some words. So from our point of view? It was a huge success.”

I was telling the truth.

We will work with Charlie all summer. We will help him find and access his language. We will teach him the “expected” and “unexpected” times to use potty talk. We will provide him with words and visuals to help him share his thoughts even if verbal expression isn’t accessible.

We are thrilled Charlie is here. We are thrilled you are here. You are in the right place.

I am telling you the truth.

 

 

*not his real name

Why the whiteboard works

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Yesterday was Field Day. An insane, chaotic, wonderfully fun day. During lunch, when people were yelling and kids were playing and things were busy, I asked one of my kiddos if he needed the bathroom. He didn’t respond. I asked him again. No response. I took out my whiteboard and wrote “bathroom? Yes/No” and handed him the dry erase marker. In less than three seconds he circled “no”, then crossed it out and wrote “ok”. I gave him a thumbs up and pointed to the bathroom. Off he went.

It’s fairly intuitive for me, now, to use the whiteboard to communicate with our kids. And it amazes me each time how well it works. So, let’s share the wisdom.

Imagine you have just been in a car accident. You are shaken up, scared, anxious, you are trying to figure out who to call, what to say, there are policemen and spectators trying to talk to you. You know people are talking but you can’t understand what they’re saying. It sounds like white noise to you.

That ^ is how our kids feel. A lot. Except for them, it takes a lot less for them to get to that point. There are a few factors at play. Sensory processing is one. Many of our kids have sensory processing difficulties, which means that they might feel, see, smell, and hear things more intensely than we do. And it’s harder for them to screen out irrelevant stimuli. Which means that, when we hear a bird chirping we may notice it, but without even thinking about it, we push it to the back of our awareness so we can focus on whatever we are doing: listening, driving, putting our shoes on. But imagine that you are trying to put your shoes on, and you hear a bird chirping, and every bit of your attentions shifts to that noise. You can’t keep putting your shoes on, because your entire being is attending to the chirp.

Next up is language processing. Many of our kids have already established language disorders or difficulties. Which can mean that on a regular basis it takes their brains longer to take in spoken words, interpret them, figure out how to respond, and then respond. So when they are then upset, overwhelmed, distracted? It will take even longer for them to process. Can you think of a time, maybe a time like the car accident example, when you know that someone is talking to you but you just can’t coordinate your brain and your mouth and your body to properly respond?

Think about a computer. If you’re impatient like I am sometimes, you may be tempted to disregard the mouse cursor that shows you “loading” and continue clicking on Google Chrome to get into the internet. Because you think, and you hope, that clicking again will make it load faster. But it does the opposite, right? Rather than speed up the process, it just makes your computer lock up more. It takes even longer to load that original window. And it might result in a shutdown and a necessary reboot. Now take that example to our kids, whose brains work in a similar fashion. You give a direction. They don’t respond so you give it again. They still don’t respond so you give it a third time. You are essentially locking up their systems more. Making it harder, rather than easier for them to process and act. Making it more likely that they will shut down.

Our kids are dealing with magnified sensory experiences, decreased language processing, often attention and emotional regulation difficulties, and inability to screen out irrelevant or unimportant stimuli. The solution? Simplify your language. If you need to give a direction to an already escalated or distracted kiddo, make it simple. Instead of, “you need to put your shoes on because it is time to go and you can’t go barefoot”, try “shoes on.” See how much quicker they respond. You can give the explanation when the task is complete.

Better yet, don’t speak at all. Turn to the whiteboard. If you write “shoes on” and show them those words, you are effectively communicating your direction without adding the additional processing that they otherwise would’ve had to deal with.

If you work with one of our kids and they seemingly are ignoring you, or not following your directions, it can be frustrating. So, try writing down your direction on the white board (“shoes on”). Or show them a picture (a visual of a kid putting his shoes on). And then give them a few seconds. And chances are fairly good that you will see a response.

The kid who won’t sit down even when the teacher keeps telling him to; the kid who looks like he is ignoring the direction to take out his pencil; the kid who is staring out the window constantly during class and ignoring the lesson: these might all be our kids. And in that case, none of them have intent, malice, or belligerence. It’s their systems. It’s their wirings. They can’t change their neurology, but we can change our delivery.

I remind myself on a daily basis: kids are doing the best best they can with what they have. (and we are, too!)

The Big Storm

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I went to the doctor’s yesterday, to get a TB test for one of my jobs.
My plan was to get there at 3:30 for a 3:45 immunization, and be gone by 3:50. I had a plan in my head, the rest of my day felt contingent upon that plan, and I felt confident knowing my timeframe.

But, they couldn’t check me in, something was wrong in the computer, they ran late because of that, there was only one nurse available, she was running late, I had to have the test done in a chair instead of laying down, I wasn’t allowed a band aid after, I ended up having to go back and wait in line to get my parking ticket validated because I was there far longer than the free half an hour. Now, all of those are seemingly little factors. And maybe if one of them happened independent of the others it wouldn’t have been a big deal. Or maybe if it was a different day, if I was more or less tired, more or less stressed, more or less hungry, it would have been more or less of a big deal. But on this day, under those circumstances, it was a Big Deal. And I ended up crying in that chair. And then a few good minutes of bawling in the bathroom after. Why? I don’t know. It felt Big. It was a swirly, shabby, pounding storm within me and it needed to get out. And it came out in tears.

And I couldn’t help but think of our kids. Look, I’m neurotypical. I have a good amount of inhibition. I have coping mechanisms. I have words that I can access. I can be flexible. And still…..still, I was frustrated, annoyed, irritated, stormy. Because I’m human and because sometimes with a certain set of circumstances, you just get stormy. But if I had even a little less inhibition, less access to coping methods and words? I might have screamed. Or kicked. Or bitten. Not because I had some sort of malice, mean intentions. No, simply because those would be as reflexive as crying was to me yesterday. I didn’t decide to cry. There was no intent. Just as there wouldn’t be any intent if I had acted out physically. Like one of our kids might. It’s not a temper tantrum and it’s not purposeful. It’s a reflexive way for their bodies to release the Big Stormy feelings inside. Like tears did for me.

And it thought about how we work on the Problem Scale with our kids. And how sometimes when a kiddo is frustrated or mad about something, we remind them that it is just a “glitch.” But right before I had started crying, if someone had said, “Jen, this is just a glitch,” I might have screamed! It would have felt so invalidating – like, how dare I feel this way. So it reinforced why we need to validate our kids’ feelings. How we need to acknowledge that it might feel like a 4 or a 5 [on the Problem Scale] but we need to react like a glitch. And sometimes just that validation is enough. But to dismiss how it feels isn’t fair. Because the feeling is physical, it’s reflexive. Hearing that they shouldn’t feel a certain way is completely unsuccessful, detrimental.

Our kids do the best they can with what they’ve got. Sometimes in different moments they have more or less. And that’s how we are too. Ultimately, we are all human. Ultimately, we are all doing the best we can in that moment.

A different type of self-care

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I have had some sort of sore throat/ears are full/swallowing gives me sharp pains/no energy/other pleasant symptoms going on this whole week.

And I haven’t gone to the gym, or exercised, since then. In fact, I’ve barely done anything after work besides lay on the couch and occasionally go into the kitchen to make more tea.

This will resonate with you in one of two ways. Either you’re thinking, “Well, that makes sense, I would hope she’s done nothing but rest” or you’re thinking “Oh that’s so frustrating to lay around and do nothing.”

When you’re sick, you need to rest. But that statement, which should be so simply interpreted, has so many complex layers. Like, my mom reminding me, “When you’re sick you have to take care of yourself.” But going to the gym IS taking care of myself! Working out, in whatever form, helps my brain calm down, helps my digestive system do its job better, helps me feel grounded and strong and solid. So my self-care IS going to the gym! How could I not do it? Plus, in the spirit of being real and raw, I will admit that a part of my brain did start asking me, “Do you need to worry about this? Will you lose muscle or gain weight from laying around on the couch and doing nothing?” The good news? The core part of me, the healthy strong wonderful part of me, that had taken a backseat the past few weeks, did feel a little apprehensive but spoke up and quickly answered, “No. It feels weird and it feels different but this is NOT something I need to worry about.” And for the most part, I didn’t.

Anyway, I guess what I’m mulling about in my minds is how important it is to remember that self-care takes many forms. And it can look different on different days and in different situations. So in this case? Self-care is laying on the couch and napping and eating a lot of brown rice pasta smothered with cheese. Another day self-care is a hard workout at the gym. And the same goes for anything – some days self-care is drinking two glasses of wine and other days it’s not. Some days self-care is calling a friend, other days it’s having alone time.

Re-reading that I’m struck by (duh – a should’ve been obvious conclusion) the word balance emanating from each of those sentences. And of course! Isn’t that what everything is about? Finding a balance between…well….everything?

I am finding balance. My tea and blankets and books and naps have served me well and I have stretched out my body before bed and in the morning and my body feels good and glad that I rested it and THAT was my self-care these days.