Every child has different sensory needs – but what happens when those needs aren’t being met?

In this episode of the Learn With Less podcast, Ayelet sits down again with speech-language pathologist Carrie Clark – this time to talk about a more personal topic: her home life, and her experience raising a toddler with sensory processing disorder.

Carrie and Ayelet discuss Carrie’s personal experience as a mother of a young child with high sensory needs, the ways her son’s diagnosis manifests in her family’s life (and the ways in which they are also a completely typical family!), and tips and resources that have been helpful in her navigation of the world of sensory processing disorder.

QUICK ACCESS TO LINKS FROM THIS EPISODE:

Learn With Less podcast episode with Jill Loftus: Tips to Meet Your Infant or Toddler’s Sensory Needs

Learn With Less podcast episode: What is Emotional Regulation?

Heavy Work Activities from Learn With Less

Carrie’s Pinterest board of activities that help her son 

Learn With Less podcast episode with Christie Kiley of MamaOT: What Is Sensory Processing?

Elevating Kids Sensory Development Program

The Out-Of-Sync Child Has Fun, by Carol Kranowitz

The Out-Of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, by Carol Kranowitz

CONNECT WITH US!

Ayelet: Facebook / Instagram / Pinterest

Carrie: Website / Facebook / Instagram / Pinterest

TEXT TRANSCRIPT OF THIS EPISODE

Welcome to episode 51 of the Learn With Less Podcast. Today, I’m thrilled to bring back my friend and colleague Carrie Clark, a speech-language pathologist who is the founder and owner of the Speech and Language Kids website as well as the new SLP Solution brand.

Through her websites, Carrie breaks down complex research and theory into step-by-step guides for treating a variety of communication problems. But, today, we’re going to be talking about another side of Carrie. Carrie is also the mother of two young children, one of which has sensory processing disorder.

Carrie, welcome back to Learn With Less! Thanks so much.

Carrie: Why, thank you! I’m excited to be here.

Ayelet: So, I have asked you to come on the show today, again, not as a speech-language pathologist, but, first and foremost, as a mother. So, let’s just start by… if you could give us a little bit of insight into your transition into motherhood. Can you think back to that time, and what that was like for you logistically as far as what life was looking like for you at the time, and then emotionally, of course, any of those relatable, raw, early mama feelings that you can describe.

Carrie: Well, ok, so I’m going to preface this with – my son is almost 4, he’ll be four on Valentine’s Day. I feel like the last four years of my life have been fairly blurry, and I think it’s all the sleep deprivation. So, to the best of my recollection (dot dot dot). But I was working in the schools as a speech-language pathologist, and knew that we were going to start trying to have kids, and I wasn’t super fond of the idea of working all day at the schools and putting my little one in childcare and all that, so I started my own private practice pretty much around the same time.

I quit my job in the schools… I think my last day at the schools was right around when I found out I was pregnant. So, I was starting that business and my website business while being pregnant… and trying to make that all of that work at the same time. Some days that went really great, and some not so much! So, once we had him, I worked part-time with my private practice while my parents watched our son. So, that was kind of how we got started, and it’s just evolved into crazy different ways than I ever would have imagined!

Ayelet: Yeah. I mean, we all have to do just what works… whether we’re home, whether we’re at work, or whether it’s somewhere in between, it’s always interesting! And then what about, when you had a child, what was that like for you emotionally and coming into new motherhood. Can you get into that space with us?

Carrie:  So, I was the kind of mom that I totally thought I had this on lock-down, you know, like, the pre-mom, I guess. So, like, when I was pregnant, I guess. Like, I was a really good mom until I had kids. Ha! You know, you have all these ideas like, you know like, oh, well if you just show respect to your child and treat them respectfully, your child’s gonna grow up to be a respectful child, right? That’s how that works? Well no, not really. Like, I had all these ideas. I thought, well, I can figure anything out, you know, I figured out how to start my own businesses, like, I can do parenthood, you know, and I’ve worked with kids for most of my adult life… like, I got this!

And then we had one. And I felt like I had no clue! Despite all the preparation and all the “I got this,” once you’re actually holding that baby and you’re taking that baby home and you’re like, “are you sure you want to let me take this thing home? I don’t know if that’s a good choice!” So, I would say overwhelm was probably the biggest emotion.

Ayelet: Overwhelm. Yeah. So, now we’re getting to sort of fast forward a little bit. When did you first suspect that something was actually a little bit different about the way that your son was developing? What were some of the signs that stood out to you?

Carrie: So, hindsight is 20 – 20. Looking back on it, we had signs probably as early as maybe 6 months. So, I can look back and be like, “oh yeah, that wasn’t… no, that’s not normal.” But he was our first, and when I was working… all the clients I’ve worked with are really severe. So they have a lot of needs and a lot of problems. And so my bias for what’s “normal” was so skewed! And so it just, you know, like, this child screams bloody normal if you try to put something on his feet. That’s probably normal, right? That’s, like, a normal baby thing. Babies just hate things on their feet!

But, like, little stuff like that, that I’d say he’s a little quirky. You know, there’s a lot of quirkiness in the world. And so, we did that for quite a while. And then, so it was right after his third birthday, a year ago. We went on a trip, and we were in a bathroom. And there was one of those super loud flushing toilets, you know? And so he was standing right next to it and it scared him, and I was like, “yeah, that was loud. Cool, no worries.” Didn’t think that much of it. And then for the next two weeks, he cried and screamed every time he had to go to the bathroom. And it was like, what is happening here? And, so I thought, you know, well that’s too much.

That was, in my head, where I was like, “time out.” Let’s look at this a little bit deeper. And so I called one of my friends who’s an occupational therapist, and I was like, “yeah, so where’s the line between quirky and then an actual problem when it comes to sensory stuff.” So she said, “ok, well just write down all the things that you think are a little quirky.” And I start writing this list, and as I’m going down, and there was more… and more, and I was like, oh my god, why did I not see this? Like, I work with kids with special needs. Like, how did I miss this for three years? So, that was a little bit depressing when I realized…

Ayelet: Hindsight is 20 – 20!!!

Carrie: Yeah! And when you see it all on paper, that’s so much different than just looking at your kid. I totally get it. Because as a speech-language pathologist, I would always do those developmental checklists with a parent, and walk them through this, and see that look on their faces. And then having that same experience with my own kid, it was like, “oh God, this is horrible! Why do we do this?!” But you have to get there. You have to have that moment of, “Ok, well we have to fix this. There’s actually something wrong now.”

Ayelet: Right. So, prefacing this by the fact that as we know from previous podcast episodes that we’ve done with other speech-language pathologists and occupational therapists who’ve described to us things about sensory processing and sensory processing disorder, we process sensory information in many different ways (obviously, there are many different senses, also), and how one child experiences sensory input is a very different way from how another child does – especially when we’re talking about a child who is sort of “over” and “under” processing that information. So, with that preface, can you tell us a little bit about what were some of those quirky things that you noticed about your child?

Carrie: Yeah. So, he has… some sensory systems he seems to over-process, like you said, and some, he seems to under-process. So, for example, whole body movements, like, being able to move his body, he seems to be under-processing that, in that he craves and needs so much movement just to keep his center of calm. So he’s my climber, my jumper, my bouncer, like, he is bouncing off the walls most of the time! For Christmas they got an 8-foot trampoline. That’s what we have in our play room right now, because they need that. Both of my kids are kind of like that. And, you know, that’s one of those things like, “oh, well, he’s a little boy – he’s just an energetic little boy,” right? So many little boys are like that.

But he takes it to such an extreme where it’s, you know, if he doesn’t get that kind of sensory input all day long, then he’s screaming and throwing fits all day long, and it’s just this hot mess. So that is one that he under-processes. Sound is one that he over-processes, where too much sound is very… he can really have trouble with that. You know, like, we couldn’t run the bathroom around him, we couldn’t run the blender around him, and he was pretty self aware of that, and so he would actually advocate for himself, which was awesome. So we’d be cooking, and he’d see the blender, and he’d say, “Are you gonna do that? Because I’m gonna go over here…” And we’re like, “Ok! I’ll wait, yeah, go ahead.” So, he was still functional. It wasn’t like he wasn’t functioning. He just had a lot of different issues when it came to some different sounds or… his brother was a big trigger for him.

So we had a baby when he was two and a half, and his little brother had a bunch of allergies, food allergies that he was getting through what I was eating, through the breastmilk, so he pretty much screamed for a month straight, until we got that settled down. And so that, the screaming, obviously, was like a huge trigger. And then, for some reason, his brother touching him, in any capacity, was a trigger. So that would completely set him off. Still does, to an extent. They’re getting a little better now, but like, any sort of touch or sound from his brother was like, we’re done. And so, you know, as you can imagine, having two children in the same house, that happens a lot. It was just meltdowns all day long.

Ayelet: Yeah!  We had a wonderful occupational therapist, Jill Loftus, come and speak with us about a month ago, about the difference between tantrums and sensory meltdowns. But can you give us in your own words and in your experience… how do you navigate that, the difference, and what are some of the ways that those things look different in your family?

Carrie: So I will say, I struggle with this sometimes, is knowing.. and so, what I try to keep in my mind is that a tantrum they’re doing for a reason, a meltdown, they’re not in control of. And so sometimes if I suspect it might just be a tantrum, I’ll use, like, a quick trigger that I know will turn it off like, “oh, did you know that we have marshmallows in the cabinet?” like, just to kind of test my theory, almost, you know, not like I’m rewarding you with a marshmallow every time you throw a fit, but if you can turn that off to go get your marshmallow, then it’s like, okay, now I know in that situation, you’re just working it.

But, usually, the meltdowns are like, they will be triggered by a hair. You know, like, something entirely minor will happen, you know, like, he drops his sock, and then, all of the sudden the world is ending. Like, that was weird, that didn’t connect in my head as something you should tantrum about, but it kind of blurs sometimes. The lines definitely blur.

Ayelet: It can. Do you feel like there are… the sensory meltdowns – that you can connect them to some sort of outside input that is triggering something for him?

Carrie: Sometimes yes, sometimes I have no clue. Because, I think sometimes it’s like, oh, well, you just didn’t move enough today. And so that’s not a clear… it’s hard to connect that. Sometimes I can say, oh, yeah, looking back on it, we had a lot of TV time this morning. That’s probably where some of this is coming from. Or, sometimes, it’s super obvious, like the toilet. Like, every time I put you a toilet, you’re screaming. That one’s pretty easy to figure out. But sometimes it’s not. Sometimes, I have no clue.

Ayelet: Yeah. And I mean, because I think because so many toddlers – all toddlers struggle with this ability to self-regulate. But it’s… when you have this added factor of, actually it’s just the world that is difficult, and it’s not just my big emotions that are difficult.

Carrie: Yes. Yeah. And I think one of the hardest things that I’ve had to deal with is other peoples’ feedback and perceptions on this, because it’s not a diagnosis that most people know what it is. If you explain it, most people are like, “okay, that kind of makes sense…” But like, ok, from the outside, I have a kid who throws lots of fits and who is really active. Ok, well, yeah.

Like, that does sound like every other three-year old boy. I get that. But then when you have somebody being like, “Why do you think he has sensory processing disorder, or why do you think he needs therapy? He’s fine! He’s just a little boy, let him be a little boy!” And it’s like, okay, well I think I know my kid better than you, but you know, maybe you’re the expert on my kid. Let’s see what you do with it!

Ayelet: Yeah! Let’s see what happens if I let him stay with you for a couple of hours, let’s see how that goes!

Carrie: Yeah, maybe for an hour, let’s see what happens.

Ayelet: So, what are some of those, if you could a little bit of education with those people – and in your best self, right? When you’re not engaged in that emotional defensiveness, like, what would you say to that?

Carrie: Well I try to phrase it in ways that I think it’ll make sense to other people if I think they’re receptive to that. You know, sometimes I’m like, yeah, you’re right, little kids, haha… move on. But if it’s like a family member or someone who’s going to be around us a lot, I like to phrase it as, okay, he experiences sensory information differently. So, sometimes, the things he experiences like sounds, they come in really loud. It comes in hot and heavy, it’s too much, and he can’t handle that.

And sometimes, things come in quietly, and he doesn’t feel them enough, and so he needs to do more of that. And all of that keeps his brain… I like to use the fight or flight analogy as like, he’s in fight or flight mode all the time, because of this bombardment of sensory information that he can’t process. And so, when you’re in fight or flight, and then every little thing sets you off all day long, and then you can’t sleep at night, and then you’re sleep-deprived, and then you’re just… it’s just really hard to be him. So that’s generally how I explain it.

Ayelet: Yeah! I think also that sense of – this is a cycle. That this is a cyclical effect, actually, and the more we can support that not to happen, the easier his life and all of our lives will be.

Carrie: Yeah, yeah.

Ayelet: So, okay, Carrie. Let’s take just a quick break to hear a word from our sponsor, and then we’re going to hear a few tips and resources from Carrie about the kinds of things that have been most useful for her as a parent.

Ayelet: Alright Carrie, what are those things that have actually been helpful for you as a parent of a child with sensory processing disorder, right, one parent to another, many parents to you, what is one or several things that you’d like to convey to others who might suspect that their child has high sensory needs?

Carrie: Okay so, a couple of things. First of all, every kid’s different. So, don’t feel like if I give you a strategy and it doesn’t work that you’re doing it wrong, or there’s something weird about your kid, no. They’re all different, and especially when you come against issues like sensory stuff, everybody’s gonna have something that works differently. And I think the most important thing is just go get help. Don’t think that you have to suffer through this alone, don’t feel like you have to figure it out on your own, because there’s somebody who already has all this information in their head and they can give that to you.

So don’t feel like you have to go it alone. In terms of tips that have helped at home, the biggest thing for us is heavy work, which is getting your child to do something with their body, do something that approaches maximal effort, so they’re moving their body, they’re using their breath, they’re moving their body fully. I think our lifestyle these days is very, it’s very sedentary.

It’s very, we don’t move enough, you know, we’re not – most of us – are not out on the farm milking cows, collecting eggs, and all those things all day. If that was the case, my son would be a rock star. I’ll tell you what, he would be the rock star of the farm. We should live on a farm, probably.  Because he… that’s what he needs. He needs movement, he needs exercise, he needs a job, he needs a purpose. And so, sometimes, we have to build that into our day, and be cognizant of that while I’m planning activities, or while I’m suggesting things to do. Ok, so, heavy work. I actually have a Pinterest board – maybe I can find the link to that.

Ayelet: That’d be great, we’ll put it in the show notes.

Carrie: Perfect. I just started taking pictures of my son doing different things that I was like, “oh, he’s really into this and it’s helping his body.” I just would take a picture of it and put it on a Pinterest board. And, no joke, it was for me. It’s on my Pinterest board for the Speech & Language Kids brand, because other people probably could use this, too, but it was just because I would sit there going, “oh my god, we’re having one of those days.” He’s so crazy, what could I do right now that would help. And then I was like, oh! I have a Pinterest board for that!

So then I would just go through and see, those are the things that worked. So, things like, we have a little mini vacuum, like a hand-vac. And we just put it on the ground, and he crawls and pushes it, and he vacuums up under the table. We do that after every meal. Even if it doesn’t need vacuuming. He loves it, and he thinks he has a job that is really important (which he does, I mean, I like my floor vacuumed!), but it also helps his body! And so, now, I will say, he’s getting better with sounds now, so the sound doesn’t bother him. But things like that, where they have to push or pull, stacking chairs, moving chairs, blowing and sucking is actually really helpful for him.

Ayelet: As in, through a straw.

Carrie: Yes. Because, it doesn’t seem like a whole body movement, but if you have, for example, a thick smoothie or like you get a straw and blow cotton balls across the table, he has to really focus and use a lot of breath to do that. So, sucking, blowing, chewing (we get him crunchy foods a lot), so lots of heavy work. Lots of getting his body moving and doing maximal effort.

Ayelet: That’s great. Wonderful. We actually also have a previous episode of the Learn With Less podcast with MamaOT – Christie Kiley of MamaOT – who gave us some wonderful ideas for heavy work, and I’ll link to that, as well.

Carrie: Nice. The other thing that helped us quite a bit was that we did about 6 months of therapy with a chiropractor who’s local in my area, and he went through a special training (and I wish I could remember the name of the training or where he got it). It’s basically brain integration exercises, where it’s looking at primitive reflexes, so things like, you know, you touch their palm and then they grab your hand – that’s the palmar reflex.

So, for him, for whatever reason, those reflexes that should have gone away in the first year of his life, he held on to those to some extent. And it was really interesting, because we sat down with this chiropractor, and he tested these things. Like, he would tickle the palm of his hand. And for me, I would just kind of think, oh that kind of feels funny, you know, no big deal. He did that to my son, and he was like, “get it off!!” and was rubbing his hand, and like, “yuck!”

And I never noticed that reaction before, but I also never tried tickling the palm of his hand – why would I do that? And so, that was just an indication that his nervous system is not all integrated, it’s not doing what it’s supposed to be doing, in whatever capacity. So we did about 6 months of therapy with him of these very specific exercises that work the brain to integrate those reflexes. And so we did that along with some chiropractic adjustment, and he does dietary modifications like avoiding allergens and triggers and that kind of thing.

And so that was really helpful. We need to go back and do another round, probably, but we were doing really well for a little bit, so I was kind of like, “yeah, let’s see how we do” and it kind of cycles. So yeah, that was really helpful. And so his program is called Elevating Kids.

Ayelet: Elevating Kids. Great, we’ll take a look at that.

Carrie: Yeah. And they’re working on getting that system online. I think they’re going to put it on Teachable, and so you can actually buy the exercises and watch the videos and do them at home. Their website is elevating-kids.com. So that would be a resource that I really like.

Ayelet: Very cool. Is there any other favorite resource for parents interested in learning more in general that you have?

Carrie: I’m trying to think. I did read a couple books. I think it was, “The Out-of-Sync Child Has Fun.” That one was a really good one, because it had a bunch of activities and games in it that I thought were really helpful. I feel like, being in my profession, I understood sensory processing pretty well, so I didn’t need to read up on what it is and how it’s functioning, and honestly I needed “what do I do right now with my kid.” So, I liked the Out-of-Sync Child Has Fun since it’s activities, but there’s also the Out-of-Sync Child.

Ayelet: For more background information and basic… yeah, great resource.

Carrie: Yeah! I think those would be my top ones, my top resources.

Ayelet: That’s wonderful. Thank you, Carrie! And thanks to all our participants of the Learn With Less® Curriculum Online Program for families who are listening live, here. We will continue the discussion and open up for a Q&A session for you guys in just a minute. For everyone else listening from home or on the go, thanks so much for joining us, and we will see you next time.

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