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autism

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.

Clarifying

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I would like to clarify a few things about my last post. Now that I’ve actually read what I wrote, heard some good feedback, and had a great conversation with my dad about it, I’m have a bit more clarity.

I’m going to start with an example. Examples and metaphors and comparisons help me fully understand things. So: imagine that, when I was born, there was some way of knowing that I was going to be a highly-sensitive introvert. Would I have wanted doctors to tell my parents, “eh, just let her be, it’s who she is and whatever that brings with it, she’ll deal with, it’s just her”? NO. What I would want them to say is, “Your daughter is a highly-sensitive introvert. Let’s give her support around managing her sensitivities and intense emotions, help her with her anxieties and obsessions, and capitalize on how this makes her who she is.” If those same doctors had said, “Your daughter is going to be a highly-sensitive introvert! Let’s help her recover from this so that she never feels extreme emotions and doesn’t have anxieties and quirks” then I would’ve lost who I am at my core. I would have lost my love for nature, my mixing of senses, my tearing up at a sunset or a song, my intuition around people, my understanding of the kids I work with…..it goes on and on.

That is what I was trying to get at in my last post. Do I want doctors to say, “Your child is autistic. Okay, good luck with that”? Of course not! I’m a speech-language pathologist. I believe in therapies, of all forms. I believe in therapies in all forms for all individuals, neurotypical or autistic. I believe in early intervention, I believe in getting children all the supports they need as early as possible.

I believe in helping them to be functional in their lives. Being as independent as possible. Being safe. Forming friendships. Connecting with others. Learning.

But I don’t believe in trying to extinguish their personal interests, their stims, their scripts, their quirks. That’s their core, that’s who they are. If we try to remove those (harmless) aspects of them, we remove their essence.

So when it comes to treating autistic individuals, there’s a difference between removing their core being, and helping them reach their full potential and quality of life.

And, as my dad pointed out, it’s also an issue of semantics. The term “recovery” is just a dangerous term here. It indicates that the individual is afflicted with something that needs to be fully gone. So, I’m particularly sensitive to the idea of helping kids “recover” from autism. Again, it’s an and, not a but. I’m sensitive to the term “recovery” from autism. And, I believe we should do everything in our power to support them to be the best they can be, as they are.

Babbles about autism

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Warning: this is not going to be coherent. (Although, if you’ve read any of my posts, that won’t surprise you). This is a stream of consciousness, not edited, not thought-out, not planned. Just thoughts spewing out.

I was told about a woman who wrote a book called Autism: Pathways to Recovery. I was immediately apprehensive, because anytime the words “autism” and “recovery” are in the same sentence, my heart starts to beat a little bit faster. I glanced through the book, and I do like some of this woman’s thoughts. Being the daughter of a well-known, truly incredible (not just saying that….really) naturopathic/homeopathic doctor, who has helped countless people with various physical and mental conditions, by treating the whole person, the underlying causes, the deeper issues within the system, I do firmly believe in naturopathy. I also do believe that autism is a genetic/environmental interaction. Maybe some people are wired for autism and don’t present as autistic, maybe some are wired for autism and with toxins and environmental substances and issues, they do present with autistic behaviors. I think that’s part of it, and I also think there’s part we don’t know, and I also think that it’s more important to help promote autism acceptance and support rather than harping on a specific gene that may or may not cause autism. HOWEVER. I do not believe that every person’s autism is caused by environmental toxins. I do not believe that autism is something that can all of a sudden “disappear” with the right treatment. Yes, I think that there are some people (because I know of some) who do have a better quality of life with diet modifications, reducing inflammation, healing the digestive system, and treating various bacterial overgrowths. But doesn’t anyone?! I mean – my quality of life is better now that my digestive system is healing. Most people feel better when they stop eating refined sugars and genetically modified foods. So, yes, of course, autistic individuals will also have some improvement in their quality of life when those modifications are made. But there is a BIG difference between improving quality of life, and recovering from a disease. Autism is not a disease.

I know some may disagree. I know some see autistic individuals, particularly those who are completely unable to care for themselves, who can’t speak, struggle to communicate, hurt themselves, and think that autism is an awful affliction. And, I understand that. And, I understand that we need to do everything we can to make their lives as full of life as possible, whatever that means for each individual.

But it’s so dangerous when we start talking about autism as a disease, as something we need to recover from. And that’s what this author does. Over and over, she promises recovery, she promises that children will get the chance to get better, to recover, to be free from this condition. And that’s not fair to all of the autistic individuals out there. Autism is a part of them. It’s not a disease. We can’t equate autism to cancer, to depression, to Alzheimer’s. I think of my students with autism. Their lives are hard. I’m not denying that. These issues are not mutually exclusive. It’s not a “but”, it’s an “and”. It is hard to be autistic. AND, it’s not something we need to “save” our kids from. Autism is a part of who they are – if we took away the autism from them, I don’t know who they would be. They’d lose their personality, their characteristics, their amazing quirks and brilliant insights. They wouldn’t be themselves.

I stopped reading when the author wrote, “I will not give up until every child is given the chance to recover; until all of the
pieces of the puzzle fit together, and this chronic condition no longer threatens the next generation.” I was then fuming, and immediately started typing this blog post.

I have no doubt that this author is a brilliant doctor. I firmly believe, even without knowing her, that she means well. That she works hard. That she comes from a place of caring. That she has good insights. That she’s done years of research. That her research is substantiated. That she is a research-based doctor, not a clinical doctor. That that makes a difference.

But there’s danger in only seeing her side.

(I’m not even going back and re-reading what I wrote, because it’s likely so disorganized that it makes no sense, and I probably omitted key points and facts and I will likely get a lot of flack for it, but that’s okay, so here we go, posting it now. Please share your thoughts – I am certainly no expert, nor am I coherently expressing my thoughts, and I would love to hear what you think, whether you angrily disagree with what I wrote or whether some of it resonated with you. I’m all about the stream of consciousness)

 

In Declan’s head

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Ed note: The following is from the (imagined) perspective of Declan, an autistic 7th grader who I have seen for speech language therapy for several hours each week for two years. Some of this he was able to express in my words to me. Some of it I could figure out. And some is imagined based on what I know. I hope some day he will be able to tell me what I got right, and what I missed. Be kind, this is a weird kind of writing for me! I’ve never done anything remotely fictional before. All names have been changed.

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I walk down the hall, feeling the squirmy feeling in my stomach. It is excitement. Jen is outside her office, like she always is. She says,  “Hey Declan! It’s good to see you.” A few times earlier in the year she forgot that second part, so right before we began class I’d whisper to her,  “It’s good to see me.” I whispered because that way it would not bother the other friends. And then she would remember and say it to me.

I look at my friends in the room with us. When I was a little boy, Mommy and Daddy and teachers at the other school called everyone friends. But these two are my real friends. They like me and I like them! I grin and whisper to one of them,  “C for Carly!” and Carly smiles and says back like she always does,  “That’s right Declan!” She understands why I’m saying that, I think. It is because on the show that is Sesame Street that was on when I was a little boy, there was a girl named Carly and that’s what they said. And when I say that to Carly now it is to show her I like her like I liked Sesame Street. And she likes me too. Then I look at Maya, my other friend. I do our Friday routine. I say to her,  “What day is it, Maya?” and she exclaims,  “Friday!” We like our routines.

I am feeling so happy. Everything is right. Except then Carly and Maya start talking about who will be the teacher when they play school. This makes my belly squirmy but not the good kind.

“Ugh,” I tell Jen. “I really want to start our work. ”

Jen say, ” I know. But we can give them one minute to talk.”

“Because why?” I ask. If there is a reason, it makes my belly calm down. Jen knows that. She always tells me the reason.

“Because it is okay to let people have a minute to talk. It is good practice for them to talk to each other. And it is good practice for you too. Like, is this a 5 problem?” Jen asks.

I grin because not only did Jen give me a good reason, she is launching into one of my most favorite scripts that always makes me make happy noises.

“No it is not a 5 problem. We don’t have to say….” I wait for Jen to do her part.

“We don’t have to say,  ‘AH!  STOP TALKING WE HAVE TO WORK RIGHT NOW!!” I love when Jen fake screams. I make some happy noises.

“We could just say…. ” and together we say, “Oh well, I can be flexible.”

Now I’m feeling much better. I watch the videos in my brain from when I could not be okay with that, from when it would make my belly feel so awful that I might scream. It is different now! I’m a bigger boy and I can use my scripts to help me feel soft and squealy instead of hard and breakable!

We get started with our activity. We are talking about problems and solutions. We talk about what’s a wacky solution and what’s a smart solution. We are practicing calling 911 because Carly wants to act out one of the situations. She is in theater club. My brain knows that in the file of Carly that is in that folder in the brain.

Carly pretends to dial 911 and Jen pretends to be the operator. This is pretend. I know that now because there is not a real phone. I play pretend too sometimes, like when I feel heavy because a friend is absent so I pretend call and talk to them so I feel better. Jen is telling Carly that the pretend officers will be there right away. It is sillyscarystrangefunnybumpyhardwhirly so my mouth laughs. Jen says,  “I know! It’s a little funny pretending.”  I am glad she doesn’t tell me to stop laughing. I am not laughing. I think other friends and teachers hear laughing but that is not what my body is trying to do. I don’t know how to explain that. But my friends and Jen get it.

I start thinking about going over a bridge because I love bridges. And then I imagine putting the bridge on my head. Jen used to teach me that we could script about that, but in real life, it isn’t possible to do things like that. I know. But in my brain real life isn’t going on. Anything can happen which is why I am making a bridge go on my head. I start laughing and then remember, OOPS! Out loud I remind myself,  “Pause that thought! You can save it for later.” Jen gives me a thumbs up. I pick up my pencil and on the paper next to me, I write,  “Putting a bridge on my head.” This is a paper where I can write anything I want so that the words are still there, just not in my mouth, and my brain will remember because my eyes will look there later so I can tell Jen and Carly and Maya about it.

I give one last squeal, because I am excited to tell them about the bridge, and then I make my ears listen to the group.

Learning rambles

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This is going to be incoherent but I have to write before I lose the thoughts and the concepts deep into the folds of my brain, never to be even partially articulated. 

I’m reading a book. It’s called Your Brain on Childhood, by Gabrielle Principe. I’ve only read about 60 pages so far, but I’m captivated. It’s very research-heavy, citing lots of studies regarding child development, animal development, and ultimately the clear theme is that our kids aren’t being kids. Between phones, ipads, computers (all screens), lack of true “play” time (which is actually a necessity for kids! It’s how they learn – truly learn! Not just memorize what they’ve been taught), and a push to be fastersmarterwisermoredeveloped, we’re causing more problems than we’re solving. In trying to help our kids be smart and brilliant and successful, we’re actually doing the opposite sometimes.

Now, I speak as someone who is NOT a researcher, not an expert in human development, not (yet) a mother. So I can’t speak with fact or certainty. But I can speak intuitively, and I can speak from experience, with about a zillion kiddos, all across the spectrum.

And I can observe. And notice what is hardly a surprise: that the rise in learning disabilities is increasing. That more and more kids are on IEPs. That more and more kids are falling behind in school, and more and more kids are hating school. That anxiety and depression are consuming kids younger and younger. I can’t convince myself that this is random, that there’s no reason behind this. Why is it, well, I can’t state with certainty. But from my observations, of my own students and my friends’ children? I’m observing the amount of homework is increasing. That kids have less and less time to play. That more of an emphasis is placed on MCAS and other state testing. That the “fun” units can’t be taught in school because there’s no time. That kids are taught rules and things to memorize but there’s no time to learn what they want. There’s no more time to learn naturally. 

I don’t believe it’s a coincidence that my most successful speech/language therapy sessions are the ones in which we veer off course and have a completely child-directed, randomly-flowing, session. It can’t be a coincidence that my students seem to learn more when we’re talking about something that they brought up or noticed. It can’t be coincidental that what they seem to retain most comes from natural learning opportunities, and often ones they have brought upon themselves.

I don’t know what else to say. There are clearly a lot of thoughts in my head and I realize this is anything but coherent, and probably full of vast accusations and gross generalizations. But I gave you the disclaimer that this is based on absolutely no fact, nothing but my own brain, my life, my experiences. I’m sure they’ll be more to come, more to say, and maybe some cohesiveness eventually. But in the meantime?

Does anyone else, whether you’re a student, a professional, a parent, get this? Feel the same way? Totally disagree? Tell me your thoughts. It’s okay if they’re not based on anything other than the neurons firing in your head. 

“What do I tell him?”

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The mom of a 7-year-old kiddo who I just started seeing in a social pragmatics group, approached me before group this week.

Glancing at her son, she whispered, “He’s asking why he has to come to this group. What do I tell him?”

Such a common question. The parents I work with want what’s best for their children. Especially when they are in the early stages of an autism-related diagnosis, they are anxious and worried. They don’t want to say the wrong thing or do the wrong thing. They want to protect their child, yet empower him.

Ultimately, it comes down to the fact that while yes, I am a professional, nobody knows their child better than a parent does. So it’s a parents’ decision as to what to say or do. However, I do have my opinions. And I shared them with this mom.

I told her that we will get to talking about it in group, in a few weeks, once we’ve established some sort of cohesion and a sense of safety between the boys and me. I told her that when we do talk about it, we talk about how everyone has things that are easier for them and harder for them. I told her how I always, right off the bat, use the example that I’m really good at reading, but drawing is hard for me. Inevitably, one of the kids always replies, “I’m so good at drawing!!!” and I use that to say, “That’s great! It’s harder for me, but that’s okay.” And that opens up a discussion of everyone sharing what is easy and hard for them.

I explained that our kids are smart. And that even if they don’t know, diagnostically, that they have social-cognitive difficulties, they know it on an intuitive level. They’re aware that it doesn’t come as easy to them. They’ve felt frustration and sadness and confusion. And I firmly believe that it’s validating to know that others recognize it, that it’s okay, and that there are groups and ways to help make it easier.

Mom said, “Yes! That’s what I told him! I said that he’s so smart at things like math and science, but the social stuff can be harder for him sometimes. Is that okay? I don’t want him to feel like I’m pointing out his faults.”

I told her that in my opinion, yes, it’s absolutely okay. There’s a difference between accusing, and pointing out failures, and factually acknowledging strengths and weaknesses. I told her that when we keep it a secret, when we lie to our kids or tell them fakely, with a big smile on our face, “There is nothing wrong with you!! You have so many friends, all the kids like you,” that they know that something is off. It’s validating to hear, “I know this is hard for you. It’s hard for other kids too. It’s not a big deal.”

I always tell my kids and students that even for people who “social stuff” comes easier for, have difficulty here and there. I explain that what’s tricky for me is to sit back and let others talk sometimes.  And that’s okay. And I then ask, “Does that ever happen to anyone else?” And I validate anything they say. And if they say, “Sometimes I get frustrated with friends” or “Sometimes I don’t know what to say in a conversation,” I let them know that I get it. That I feel that way too, sometimes, and that probably other kids do, too.

It’s a big deal in that we want to help our kids get to a level of succeeding, we don’t want to ignore their challenges. But it’s not a big deal in that it’s not a huge secret. Everyone has strengths and weaknesses. Validate them for our kids. Let them know that we get it, that it’s not a “bad” thing. That we all struggle sometimes. That we’re going to help them as best we can.