Ep. 2: Let's Get Through These Severe Autism Summer Blues

Parenting Severe Autism Podcast host, Shannon Chamberlin shares some of the most effective tools her family relies on to get through the summer, along with jokes and stories to help you laugh through the tears and try to gain a new perspective to help preserve your mental health. Part one of three.

Transcript

Shannon Chamberlin  0:16  

Hello, and welcome to The Parenting Severe Autism podcast. I'm your host, Shannon Chamberlin and I am so happy that you're here today. It's summer. And now we're all experiencing the fits of rage, depression, crying jags, things are being thrown, walls and windows are getting busted and broken. And then, we're finally able to wipe those tears, rise from the floor, brush the dirt and dust off and realize that the only difference between us and our severe autism child is that we didn't just shit on the floor! A little humor for all the parents out there. 

So, I promised you that I would talk about some things that might be able to improve your life or just the way that you feel about your life in this episode. And I am going to just give some ideas, none of this is meant to cure anything, it's not going to. It's not guaranteed to make anything better. But I think that everybody has a story that someone else can benefit from. So I'm going to tell you a little bit of mine today, and I'm focusing on your mental and physical health. And the way that we get there, that route that we take is by making sure that our kid is feeling good, right? 

So the first thing that I always do for summer is make sure I've got a calendar. I have used a calendar for my son all year round for many years now, and it has really helped to rein in some of the really crazy behavior that we have. I mean, there's a lot of it to go around. So the stuff that has to do with boredom and insecurity, and, you know, no schedule and no routine, that kind of stuff is really helped by having a calendar. So, it's a special kind of calendar, it's not a big desk calendar, I like to get the wall calendar so that he has pictures to look at. I won't get him anything that has to do with any kind of cartoons or movies or anything, it's always going to be either nature, or, you know, like wild animals or nature scenes, or National Geographic or some kind of NASA looking stuff, you know, something that I hope will give him some sort of thought process or just something to look at and enjoy without throwing himself into a tizzy because it's Transformers or Spiderman, you know. So we completely avoid all that kind of stuff. And the cool thing about the calendar that I do is I make sure to get the the ones that have the biggest squares for each day, so I can fit in my own little notes, right? And I went into Microsoft Word and I made these little squares, and I typed in all of the things that are going on that day. And each one can be different. And sometimes I'll even make him a calendar of pictures of him with family members. He loves to look at himself, you know. And he also loves to look at himself with other family members. So sometimes I will just make our own calendar through the Walgreens website. And I you get to include birthdays of people in the family and things like that, they'll just print it right on there, you know, but I still have these little printouts that I make, and I cut them up and I put little tapes on them, and I put them on each day. So it would look something like: Wake Up. And then the next line is Get Dressed. And then Make Your Bed. And then Eat Breakfast. And then usually it would say Go to School. However, there is no school. So it will say something else. And I'll just think of what it is that I want him to do. So typically in the summer, I have a two whiteboard system. 

I always have one whiteboard in the little eat-in kitchen. He's always wanted to hang out with me when I'm in the kitchen, and I'm always in the kitchen. So when he's babbling and, you know, doing his echolalia and stuff, I try to extract things from him by writing them on that whiteboard and it gets his attention and he likes the interaction. He likes that I'm taking an interest in him I think, and it has really brought us closer and we have a sort of appreciation for each other just in that language, you know, and he can get me to do some crazy stuff and draw some crazy pictures and stuff. And he learns that, you know, because of the interaction, and I'll take time out of what I'm doing in the kitchen to walk over to that board and do something specifically for him. And he loves that. 

However, with summer, I add another board, it's a bigger board. And so the calendar in his room may end with Go Downstairs or you know, Read the White Board or something like that. And then on the whiteboard for each day, I'll have a list of activities. And I try to make sure that they're all fun. Sometimes I'll throw in, you know, some touch math, or I'll have him do a little writing, just because I want to keep him up on his skills. But he doesn't like too much homeschool stuff. So, you know, I tried to just figure stuff out that'll make him think he's doing something, right? So it may be like Play Blue Sand, that's his kinetic sand, then so most of these things are going to be sensory or you know, Do a Puzzle, Color, you know, and then other things I'll let him choose. So you can choose on your break, you can choose between these four items, you know, or four activities. And even though we're not keen on giving him access to media, movies, and games and things, because we do believe that there are negative effects of media, on his autism, such as video games and movies, they, you know, we detoxed him, that's a completely different story I'll tell you about some other time. But I will allow him to choose from watching something on the iPad or YouTube and going for a walk and playing with water, you know, just things and he'll choose things. And then as he chooses those things, once he's used that up, it disappears, I cross it off. And then the next time he gets a choice time, he only has three items. And then the next time he gets a choice time, he only has two and that goes throughout the day. So that keeps him busy in his mind, I think anyway, and it keeps both of us from get just allowing him to do the same thing all day, because I've noticed that that tends to make him act crazy as well. So as long as he doesn't do the same thing all day long, I think we're in pretty good shape. 

Another thing that really makes a difference for our family in the summer is to keep our son's hair in a buzz cut.  He gets hot very easily, and he gets very irritable, very violent. And it's very easy to keep that at bay by eliminating that issue of being hot and uncomfortable. We already know, he's a boy, he can run around in just his underwear, and some sandals and stay cool that way. But if his hair is too long, he gets really hot. So in May, he gets a buzz cut. He knows it, everybody knows it, he looks forward to it. Because it means summer's coming. It means swimming. It means all this fun, right? And he also really likes the feel of it. He likes it on his hand, he likes to touch it. But I think it also feels pretty neat on his head when he's rubbing it. 

And the next thing that he really likes is cool water well in any form. It doesn't matter if he takes a cool or tepid bath and pretends that he's swimming. It doesn't matter if I squirt him with the hose or fill up my big 10 quarts for cooking full of cold water and just douse him with it. Or if he has a sprinkler or even a little kiddie pool. It doesn't matter to him as long as he is getting wet. And one of his favorite things is just to take one of my big cooking pots of cold water.

I'll put that outside and I'll give him a wash rag. So this helps both of us. He likes the sensation of - well, first he likes to be independent, and feel as if he's making a mess and doing something that would generally irritate me, and knowing that he's not going to get in trouble for it. And then he also likes being in control of you know, how much water goes on his head and where it goes and having this rag just dripping all over him if he lays it on his head. So he likes all of that. And I like it because I feel that it's getting him more acclimated to actually washing himself. I mean, he's 21 and he's still not that great at it and I still have to beg him and I'll in some other episode I'll tell you about all the creative ways I've gotten him to do it in the past. But I feel that you know he's getting more comfortable with using a wash rag by leaving him out there with it for an extended amount of time. And also he gets to flip it around and do whatever he wants. So that works out really well. 

And he does like bike rides, we got him a big wide tricycle with a basket on it, many, many years ago. And we always, we don't have any bike trails where we're at right now. But when we did, we would put the dog bed in the basket, and put the dog in the dog bed, and we all had bikes, and we would just ride the bike trails by our house. And he just loved that - he  would duck his head down and put his elbows way up and pretend it was like the Wizard of Oz type of thing. But you know, he did love it, and it was really fun. But again, with the media reference, I think it made him a little crazy at the same time. 

So another thing that has really been impressive for us is to be able to take him to the track at the school, a running track, there's got to be something about the way that's constructed, he cannot stop himself from running on the track. And so on a nice night when it you know, towards the Twilight part, I can take him to a running track at a school. And he'll run and run and run and he just can't stop himself heat. If I ever need a little bit of quiet with him just not near me. But still in my sight and not talking to me, I can rely on the track at the high school, I can just take him over there. And he just will run and run for hours. And you really have to convince him you have to be very creative on how to get him off of the track. So I don't know if you've tried that. But you might he's he runs like the wind he loves to run. And there's just something about those tracks he he doesn't run like that anywhere else. It's amazing. So hopefully, those are helpful for you, maybe they've got your wheels turning. 

Another thing that we have done is take him to a state park we used to live up near the Rockford, Illinois area, they have a state park there called Rock Cut. And we took him there for a few different activities. And one thing that has always been helpful for us, when we're going to take him for a new activity is to let him watch videos of others doing those activities no matter what it is, if we take them to a zoo or do Frisbees, or how to use our metal detectors, anything at all. We find YouTube videos that prepare him for that it's been really amazing. It makes everything easier, because it doesn't take as long for us to convince him that this is what we're doing. He'll jump right in after he realizes that yes, this is what I saw. I recognize this.

I just want to make sure that I understand that this is what I'm doing, and as soon as my parents say that this is what I'm doing, I get it. You know, otherwise, it's at least 45 minutes before he even warms up to the idea of being wherever we are, and then another maybe hour before he even gets close to trying what we're wanting to do. So watching these, like video previews of other people having a good time doing whatever it is, is super helpful for us. I don't know if you've tried that maybe, if not, maybe give it a shot. 

We did that because we wanted to take him kayaking or canoeing or something on the little lake at Rock cut. So he was not opposed to doing it. Number one - it involves water, number two - he saw videos of other people doing it in a place that looks like where we took him. So he was very comfortable with that. The only thing was, he really wanted to get out of the little kayak thing that we were in - or he and his dad were in one - and I had my own, and we kept saying no, I mean, it was you know, it was murky water it was yuck, it had stuff all over it and had lily pads over here and then like seaweed over there, it just wasn't attractive. And you just you can see your future with your severely autistic child getting into that nasty water and you think well, maybe just save myself some trouble and just say no. So we kept saying no, no, no, this isn't the place for swimming, it's just for this little boat, we don't want to swim in this water, it's yucky. And we managed to paddle a little ways down and we found a little beach we parked on there and had some sand that we pulled our little boats into and we did a little hiking around this little island type thing and we were getting ready to get our little sandwiches out and we call our son over, and he didn't come right away and he didn't make a sound. And usually he would at least do some chatter. So we instantly were like, Whoa, and we turn around, and there he is standing at the edge of the beach where the water meets the sand peeing himself. You could see the pee running down his leg. Now he didn't do like normal, when a boy's gonna pee outside, he didn't do that - he just stood there, and peed all over himself, all over his shorts, all the way down his leg, getting on his feet. And that's when we realized exactly how crafty our son is! He peed himself to make sure that he could get in that water, he knew that there was no other choice, but for us to make him get in the water or get wet somehow, because we're not going to have him walking around with pee all over himself. So that was pretty impressive, I thought, and we got to have fun with the kayaks. So he got what he wanted, we got what we wanted, and that was really fun. 

You know, another thing that he did that day was so funny there were when we came in to park the boats and pay the bill and leave for the day, there were three old ladies getting in the water in the same beach area that we had returned to. And that was a clean water area where you can swim, so we were letting him be in the water. He just kept getting closer and closer to these women and a little bit splashier every time until finally they said things to each other like, oh, I don't want to get wet. Oh no, I don't want to get wet. Oh, move over here. I'm trying to stay dry. You know, and they weren't really talking to my son. But both of us could hear them. His dad was out at the little lodge thing paying the bill and I couldn't get him to listen to me. We had only been together about three years at that time. So you know, we were still getting to know each other and I couldn't get him to listen to me at all. Eventually, they are getting so upset, because he splashing and kicking and laughing and just the more that they objected the more he splashed and just tortured them! And it was just - at that time I was really upset and embarrassed - because I felt bad. And then I told his dad, this is what's going on, and his dad just started laughing and just kind of giggled and told him to come out of the water. And that's the point when I realized that, you know, we just can't take it that seriously, it's - you just can't - you have to laugh at some of this stuff. And she can always dry her hair and redo it. It's not a big deal. She's not going to go to the hospital, nobody's hurt, it's fine.

That was when I first came to that realization that you just you know some of this stuff, you just gotta let it go. Just laugh it off. And shame on them, I guess for coming to the water and not wanting to get wet, right? 

So another thing I noticed, that works for our son, when he's really out of line - he was so bad for one year - it changes every year, but this one year ,oh about six or seven years ago already, he had me at the end of my rope - again. And I was just so desperate for a break from him. He was torturing me constantly. And I was driving him to therapy an hour each way, and then I was driving him to other therapy a half an hour each way, and I would try to take him out to a beach or something in between. But I just couldn't stand to be in the car with him because he wouldn't stop. He just he just wouldn't stop. I couldn't have a moment of peace, whether I was at home or in the car. And no matter what, even when I left him in therapy, he was just... insane. And I finally learned that when I would take him to these appointments, we were driving this extended cab pickup that I bought from somebody and he would sometimes have to sit in the back of the cab because I couldn't deal with it. You know, he was just being too bad. But other times I'd put him in the front. And then I realized that there's magic in the front, and I made him always sit in the front.  I

f he was sitting the front and I would roll that front window down right next to him where he's sitting about an inch about an inch and a quarter actually, no more and no less, but about an inch and a quarter if I rolled that window down that far, it just shut him up. It was like it put him in a trance or, he just had this look on his face like 'this is all the noise that there can be I cannot make any noise. This is the only noise that is allowed to exist, nd I accept it.' 

And it was awesome. And so every day, it's a little less possible now with gas prices the way they are but every day I would take him for a ride in the truck even if we didn't have to go to therapy because he was driving me nuts. And I would roll that window down an inch and a quarter and drive around as long as I needed to just to get some silence. That same summer, I took him to the emergency room about three times a week for a couple months because he ju- I didn't know what's wrong with him, you know, and they didn't find anything at all, they wanted to do an MRI one day and their machine was broken. And I thought, well, you know, it's probably meant to be and I didn't push it any further, but I thought there's nothing wrong with him. I'm just gonna, you know, try something else. But I wanted it to be documented that I had tried to find out what's wrong with him, multiple times, emergency situation, and I did what I had to do there, but it didn't result in anything. So eventually, I got him to understand that if he would be cool, I would take him to the beach, and so, we could have a little picnic and he could play in the water. And that worked out for a little while until he got bored of swimming by himself, and then he wants me to do it. And then that, you know, now it's not fun anymore for me, because I still have to entertain him all the time. 

So when that stuff that I mentioned doesn't work, and you can bet it's not gonna work, you know, most of the time, right?  When it doesn't work, I know we can count on the negative.  We're gonna get attacks, elopement. 

Well, if you're anything like me, you've run out of time with this episode. So I'll cut it short here, and you can find episode three, we'll continue these tips and tricks on getting through our autism summers. We'll talk about eloping and safety. And we'll also address some self-care and adaptogens and all that kind of good stuff. Maybe even some music recommendations. See you next episode. You hang in there. You're a superhero