June 2014

To the mom I met last weekend

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

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

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.

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