Meltdowns Follow-Up

On today's episode, Melanie shares an example of the great meltdown in Niagara Falls and offers some strategies and resources. Social stories, power cards, changing our thought process, and more!
Head on over to www.wellbalancedlife.ca for links to the resources she shares.

Links of resources mentioned in the podcast:
Data Collection: https://www.earlywood.org/Page/556
Social Stories: https://carolgraysocialstories.com/
Power Cards: https://autismcircuit.net/tool/power-card
Pivotal Response Training (PRT): https://www.autismprthelp.com/about-prt.php

Music: Moments by Shane Ivers - https://www.silvermansound.com
Cover art photo by Sharon Light Photography

Thanks for listening! Follow us on Facebook or check out our blog at www.wellbalancedlife.ca. And don't forget...you're not alone! 

Transcript

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Guitar gently plays music   0:00

Melanie  0:02
Hi! I'm Mel from Well Balanced Life with Grace and Mel, and I'm so glad you're here. Well Balanced Life is a place to share stories and true feelings on living a life that includes special needs.  A place where we will share tips and strategies with the hope to support and inspire you to keep going on those harder days. You aren't alone and we don't ever want you to forget that!

So today's episode is a follow up to last week's episode that we did on meltdowns, We said that we would do follow up episodes that were specific to a symptom that causes the meltdown and I promise you we will start there next week for sure, but today I wanted to speak to you, the parent or caregiver, or even the teacher, IBI therapist, EA, anybody who spends one-on-one time with somebody who has meltdowns.

I want to share some thoughts and perspectives on meltdowns and talk about our reactions and frustrations. And maybe we can offer some different ways to kind of think of those meltdowns that may help you in the moment of frustration. 

So, first off meltdowns are hard. Very hard. They are hard to watch. They are hard to listen to. They are hard to deescalate. They're hard to explain. They're hard to understand.  Why they happen... how they happen. What we could have done to prevent them. There's so much that goes on with that. And... especially when we're in public places. That can be really really tricky as well because as we know meltdowns don't just happen at home. But in saying that, I almost sounded like a liar at times when I would try and explain what was going on at home, because they didn't see that at school and they certainly didn't see the degree of the meltdowns at school as she was having at home. But I can talk a bit about why that might happen later on. 

I thought I would share a story with you just to kind of describe sort of what Gracie's meltdowns look like and there is definitely one that goes down in the books for sure. and honestly (with laughter) I think... yeah, we definitely need parent of the year award for this one. I don't know what we were thinking, but we decided to do a family trip to Niagara Falls. One of the busiest places with large crowds and noises and oh my God! The sensory overload. So obviously this was when she was younger, it was at the beginning of our journey ,and we have learned a ton since then. And honestly I think that was the stepping stone to every other family vacation that we took after that. They were always very very planned out. I did my research beforehand, showed pictures, made stories... we were really prepared for any sort of family trip after this one because this was a doozy. 

But, we had taken the kids to... we had gone someplace like Canada's Wonderland where you can get like, a fast pass so we don't have to wait in line because at that point, Gracie is like a toddler, um... she might have been even four or five, but did not like to wait... like could not wait even five seconds. So we had the fast pass the one day. And then the next day we go to Niagara Falls and I remember clearly waiting in line for the sky wheel and she's having a fit because she doesn't understand why she has to wait. Because she didn't have to wait at all the day before. So that was lesson number one. We made sure that even if it was 5 seconds, she had to learn how to wait so we literally started off with waiting 5 seconds before she got on the ride. Even if we did have the fast pass. 

Anyways we move on to the next crazy thing on our list which was the Maid of the Mist and little did I know both my kids... I have three children. Josh and Gracie are the same age, Emma is a couple years older. We go on the Maid of the Mist and we just get herded onto this boat like a bunch of sardines. Gracie hates crowds, she hates loud noises, and she's either hyper or hypo sensitive depending on what part of the day it is. And, so lots of sensory stuff going on there. We get on the boat. We're all wearing those ponchos that they give you so you don't get wet... I mean...you do get wet, but it protects you as much as it can at least. And little did I realize... both Josh and Grace... you can just see the anxiety building up inside of them. The frowns start coming. The dirty looks. The kind of whining, the squeezing in a little bit closer, and then it just is mayhem! They are screaming... starts off crying, goes to screaming, they both think that we're actually going to go through the falls. I... that didn't even process with me! (Laughing) I hadn't even thought of that! They both thought that we were going through the falls! Once they realized that we weren't going through the falls, I had one underneath of my poncho, one was in my arm just straddling my neck crying... as we turn around and the mist starts to kind of get lighter and it's no longer raining on us, we pull up to the dock to get off. And we are herded like a bunch of cattle off the boat into a room that has multiple elevators to get up to the next floor so that we can get out onto the street. So, we unfortunately, we arrive right at the elevator doors when it's ready to go up... there's no more room, the door is closed and that's where Gracie turned into the Hulk. Literally the Hulk. 

She had such a big meltdown! She was so upset that she couldn't get on that elevator. That she had to wait again. She starts screaming at the top of her lungs! She's beet red, there is snot and spit coming out of her nose and her mouth. She's sweating, she's wet. She starts ripping this poncho off with both hands like the Hulk does. No joke, there are actually people taking pictures of her! My husband and I looked at each other like... we were dying inside! We either laugh, or we were going to cry. And I think the laughter came out out of embarrassment. 

And then... we finally get on to the elevator. Crammed inside there! And then the doors open up to a gift shop. And not just any gift shop! But a gift shop that is full of glass shelving, with glass items all over it. And when we pick Gracie up, she is like a rag doll yet her arms and legs are flailing like crazy. And it was next to impossible to try to get her through these tiny little aisles out of the store. We finally did. But that's just one example of what life was like at times. And actually quite often.  

I don't want to scare anybody! Not all kids have meltdowns all the time... and I know that some people have kids whose meltdowns were 100 times worse than what I've just described. We're all different. And my wish for you... is that you don't need to experience them... a lot. But... on a positive note, you sure do learn a lot with each one that happens. And especially when they're in public, the more and more you practice that, because you have to, the better you get at it and the less you care what others think! So, there is a bonus to just about everything.

One thing that I really wanted to highlight is that no one person lashes out, becomes aggressive, has meltdowns, for no reason There's always a reason. And not going to lie. I remember working with a student and this student could go from zero to 100 in a nanosecond and I would argue with the counselor and say "there's nothing" like there is absolutely nothing that we can figure out. Obviously there's something. I'm not denying that. But we could not figure it out. And I swear it was a thought that this person had. So we can't predict that. We can't guess. I mean we can try and guess, but we're usually wrong. So somebody could be calm one minute, get a thought in their mind, and then just have a complete meltdown. So it can be extremely tricky trying to figure out what is causing the meltdown. But, there are ways to try and figure it out.

The first one that I always recommend is, if your child is verbal and can have a conversation with you... when they are calm, and like we mentioned in the last episode, when they're calm and it's a few hours later, talk to them about it. Find out what triggered them. What could we do next time to prevent it from happening. They are the best teachers that you will ever have if you can sit down and have a conversation with somebody. 

So every new student that I worked with at the beginning of the year, even partway through the year, we would sit down and we would go over... what are your triggers? What is easy for you? What is challenging for you? What are your likes? What are your dislikes? What can I do to help you succeed? It was amazing some of the information that came out. 

But another thing that you can do is... especially if your child, teen, adult is nonverbal, and even if they are verbal, taking data collection. And I know that this can be very time consuming, but it can give you a wealth of information. It can determine what time the meltdowns happen or what the trigger was. So there's different ways to do it and I will make sure to um, put a link on our blog post and on the... I'll see... I should be able to put that on the podcast website as well. I'll put a link on there to different data collection sheets that you can just print out. I Google them or I create my own based on need, but there are ways. I know that they can be very time consuming but there are ways by numbering them... that ... where you can just kind of circle what the symptom is or the behavior that the child's having you can just kind of circle that sort of thing. 

But basically there's the ABC's. Antecedent, behaviour, and consequence. so you will basically determine what happened right before the meltdown. or the behaviour, the unwanted behavior And then B stands for behaviour. And then C is the consequence. So what happened right after? And that could be a positive thing as well. It could be a reward where they rewarded with something after. Did they get the attention they needed? Did they get the item that they were after? So there's a lot of different ways to determine what the cause is. And once we get to the root of the problem, it's so much easier to try to figure out how to prevent that from happening. And I've mentioned in the blog and I've mentioned probably in the podcast before, how important it is to be proactive instead of reactive. So if we can set up the environment at home, at school, in the community... if we can set up the environment in a way that best supports our child then it leaves room for us to be more patient and and ready if something does end up happening that we can't control. 

The second thing that has helped with any of the meltdowns... there was something that I learned...I think it was from Jeff Noble who is like this... fetal alcohol syndrome guru... he's an excellent speaker if you ever get a chance to see him I would definitely recommend it. And I'm pretty sure it was him that... he replaces the word behaviour with symptom because behaviour has such a negative vibe to it where... it really is a symptom of their disability or it's a symptom of the overwhelm that they're having. And that can kind of just put a little bit of a more empathetic feel to it. So that might help you as well. Try replacing the word behaviour with symptom. You're going to hear me saying behaviour quite often because it's the word that we've used for so long, but I'm working on it and I'm trying. And I do find that it does help if I look at it that way.

Another thing that really helps me... and I would say this probably helps me the most, when I remember to do it, is to see Gracie at her developmental age instead of her birth number. So, when she's a 16 year old girl, in a 16 year old body. Having a meltdown like a 2 or 3 year old... I am not gonna lie. I have had times where I'm like, "come on...you're 16 years old!" I didn't say that to her, but it was definitely what I was thinking. And it was how I was reacting. Like you should know better... you're 16, you shouldn't be acting this way! That's what was going through my mind. But if I take away her birth age, and I look at her where she's at developmentally, she really can be three years old, four years old, six years old, eight years old. She's always shown these different developmental stages and I find that if I look at her and I see her as that 3 year old, that helps me calm pretty quick actually. And it has been really really helpful over the years.

Another strategy that we found very helpful would be um, social stories. So if you haven't heard of those, social stories are basically visuals. It's just pictures with words that tell you... that, that teaches skill. So it could be um, how to get dressed. It could be how to sit quietly in church. It could be how to not pick your nose and how to use the washroom... making sure that you flush and wash your hands and all that. I will put a link for those as well in the um, in our podcast website and on our blog post because those can be super helpful.

Another thing that's kind of similar to that but a little bit more fun are called power cards. I'll also put a link to those. So, power cards are basically choosing a character that your child really really likes. Obsessions can be a really good thing to use to teach them these skills that you want them to learn. Now, if they're super obsessed with it, I know for us we've had to put that obsession... like completely hide everything about it because Gracie wouldn't bathe, she wouldn't eat, she was just so obsessed with whatever item it was, we couldn't get her to do those other things. So if it's that big of an obsession, try and put it on the shelf for later. But if it's just a character or something that they really really like, it could be an obsession but something where they will still do the things that they need to do, you take that character whether it's stickers or a picture from the Internet, post that on a piece... at the top of a piece of paper and you basically write a story about the skill that you want to teach your child but based on the characters. So for example, if you want your child to be eating healthier food and they absolutely love Super Mario, you would have a picture of Super Mario on the top of the page and then the storyline would basically be "hey I'm Mario! I need to be strong and I need to be full of energy and I need to be able to run fast and I need to be able to run for long distances so I need to be healthy! One way that I can be healthy is to eat healthy food!" and then give examples of the types of food that you want them to eat. And then, that is the story that you can read to your child whether it's before bedtime or when they're calm... just as a fun story. But then they also get a little cue card so the power card is just a little card almost like the size of a cue card with a sticker of Super Mario on it. And it would just have a few points on there so it would basically... like I said, have the sticker... the picture of Mario and it would say "I need to get to the castle and I need lots of energy to to win the game" and then it would have #1 "I need to eat healthy food". #2 "I need to drink lots of water" and #3 "I need lots of energy so I have to make sure that I eat..." and then you can rhyme off whatever food you want them to eat. So there's different ways that you can introduce a skill based on their favourite character to kind of get them excited to do the same thing as Mario. 

Another thing that we would do is we would role play.

I would change music. Gracie loved music so I would change the lyrics to songs. I remember... Pharrell Williams.. "Happy" the song happy... because you're happy. We changed... I changed all the lyrics to that song, all about her meltdowns... Crack my bones, pinch my skin... because I'm angry! Right? And then I just changed the lyrics to um, basically describe what the meltdown look like, and what she could do to feel better and how we.. you know whatever skill it was that I wanted her to. So we would replace... I would replace the words to lyrics and record it that way and play them. 

And we would also take pictures of different steps. So for her getting dressed... I remember Tasha her IBI therapist took pictures of her. Like putting the shirt over her head, and then putting one arm through the sleeve, and then the other arm through the sleeve, and then pulling the shirt down. So step by step, just pictures and going through those as well. 

So if you need them to... like I said, sit, quietly at mass or if you want them to sit quietly at school, or um, you know the steps of going to the store... just kind of... basically again, being proactive instead of reactive. We're teaching them how they need to walk safely in a store, walk safely in the grocery store, or sit in the cart. Just kind of planning and preparing before we actually do the activity so that they can succeed as best they can. 

And also you're going to get a ton of advice from doctors and therapists and teachers and um... like speech pathologists and occupational therapists and physiotherapists and behaviour therapists. You will get so much information and advice from all of these professionals, and it's excellent advice! It's all great, great information and you will learn so much! The problem is, when we have such a large team like most of us do, it's a lot of information to take in! It's a lot of expectation to be able to do these things with your kids and it's just almost impossible to fit it all in. So one of the things that Aaron and I did (Aaron's my husband)... we would take all that information and we would soak it up like a sponge. But we would only use the things... or we'd try different things out... that we felt was a best... the best fit for our family. 

And one of the things that I did come across was pivotal response training (PRT) and it's with the Koegels. They're both doctors I believe, they're married... and pivotal response training is just, um, it's such a great natural way of teaching because you're always teaching in your natural environment... it's natural consequences. It is... to us that was the easiest form of therapy that we could do for her um, now Gracie did get IBI therapy 20 hours a week, which that can be a whole other podcast as well. So we were very grateful that we had that one-on-one time for her for sure. But when it was just us, we needed to do something that would fit with our family. So don't feel bad and don't feel like you're not a good parent if you can't keep up with all the advice and information that you're taking in. We're only human and we can only do so much. 

One of the things that I wanted to come back to from the beginning of the episode is when I had mentioned that Gracie's meltdowns often seem more drastic, or dramatic, or explosive when she was at home and sometimes the school didn't see that. So it was hard for them to understand what her needs were based on how she was presenting there versus at home and one of the main reasons for that, I believe, is because we are our children safe space. We are their safe person. They have been sitting in class all day, trying to navigate the world that isn't built for them and isn't willing, often, to change for them. So they've been holding on to... you know trying to be somebody they're not or trying to fit in with other kids. Trying to understand, when they have really poor receptive skills... trying to understand what's being taught to them. So it only makes sense that by the time they get home, that's when they just feel safe enough to let it all out. It's really... it can really be explosive and it's just building up, building up, and building up. So that's another reason why... and it's not always easy... but that's another reason why it's important not to take things personal. If anything try and look at it as... they do love you, and they do trust you, and they see you as their safe person. So they feel comfortable enough to finally let it out. 

So like I said... next week we'll be sure to pick one of the symptoms, whether that's about communication or sensory issues, wants and needs, just anything that could potentially trigger... one of the... that could potentially trigger those meltdowns and then we'll have some specific strategies for that. 

But today I just wanted to give you some general strategies of, you know, regardless of what the reason is, you can kind of give those a try, or just try and change your mindset to kind of look at them in a different light. So I hope today's episode helped. I'm really glad you're here! We hope to see you next week, and don't forget you're not alone!

Guitar music gently plays and fades out.