Creating a safe, structured home for a profoundly autistic child means thinking ahead to prevent risks. When my son Michael ingested a chlorine tablet due to pica, it reinforced the need for smart locks, alarms, and cabinet locks to secure hazards and prevent wandering. Managing water intake is also crucial, so we use thumb valves and toilet restrictions. Simple, cost-effective solutions—like a binder clip on a shower door—help balance safety with practicality. Organization fosters independence, with labeled cabinets making daily routines easier. Ultimately, it’s about creating a space that’s both safe and empowering for our child to thrive.
Autistic Home Safety: Adventures with My Son Michael
You know those parenting books that make everything sound so neat and organized? Yeah, this isn’t one of those stories. This is about real life with my son Michael, who has autism, and how my wife Kay and I turned our house into what sometimes feels like Fort Knox (with a dash of love and a whole lot of binder clips).
The Day Everything Changed
I’ll never forget that afternoon by the pool. You know that moment when your heart drops into your stomach? When Michael screamed, I felt it. There he was, our curious boy, with a chlorine tablet in his mouth. Not his finest moment – or ours.
Thank God for Kay’s obsession with keeping emergency numbers on the fridge (I used to tease her about that – not anymore!). One frantic call to poison control later, we were forcing milk down Michael’s throat while I tried not to completely lose it. He was fine, but let me tell you – nothing makes you rethink your entire house setup like finding your kid treating pool chemicals like candy.
Operation Lock-Down (Or: How I Became Best Friends with the Hardware Store Guy)
After what we now call “The Chlorine Incident,” we went a little… okay, a lot overboard with safety. Our house probably looks like we’re protecting the crown jewels, but hey, whatever works, right?
We’ve got more locks than a prison (okay, maybe that’s not the best comparison). Smart locks, chain locks, cabinet locks – you name it, we’ve probably got two of them. And they’re all strategically placed where Michael can’t reach them, which is harder than it sounds because that kid is like a tiny ninja when he wants something.
The kitchen was our biggest challenge. Michael’s got this sixth sense for finding snacks, and while I admire his determination, we had to make sure he couldn’t get to anything dangerous. Every cabinet with cleaning supplies or sharp objects now has more security than my online banking.
Even the fridge has a lock, which sounds extreme until you’ve dealt with a kid who would drink an entire gallon of water in one sitting if given the chance. Trust me, it’s necessary – especially with his medications.
Finding Our Rhythm
Here’s something they don’t tell you about autism: routines aren’t just helpful, they’re like oxygen. Michael needs them to make sense of his world, and honestly? They’ve made our lives easier too.
Take the shoe thing, for example. Every night after his bath, Michael puts his shoes away in his closet. Sounds simple, right? But this little ritual is pure gold. It’s predictable, it’s achievable, and it gives him this sense of “I’ve got this.” The pride on his face when he does it? Priceless.
Labels: My New Obsession
I’ve become that person who labels everything. And I mean EVERYTHING. At first, Kay thought I was losing it, but here’s the thing: labels are like little road signs for Michael. They tell him where things go, where to find stuff, and most importantly, what’s off-limits.
His room looks like a mini organization convention, but it works. He’s even starting to put away his own laundry (well, sort of – let’s call it a work in progress).
The Great Pool Fiasco (Or: Why Routines Matter Everywhere)
We learned about the importance of routines the hard way during a trip to Texas. Picture this: a bunch of excited kids with autism at a pool, no clear routine, and pure chaos ensuing. Kids jumping in fully clothed, shoes and all – it was like a scene from a comedy movie, except it wasn’t funny at the time.
That day taught us that routines can’t just be a “home thing.” They need to travel with us, like an invisible security blanket.
Our Not-So-Perfect Solutions
Can we talk about the binder clips on our shower doors? Not exactly Pinterest-worthy, but they work! Michael was fascinated by sliding the doors back and forth (and off their tracks), so we got creative. Sometimes the best solutions aren’t pretty, but they get the job done.
The Never-Ending Story
Here’s the truth: we’re still figuring this out. Every day brings new challenges, new solutions, and yes, sometimes new locks. Our house might look strange to outsiders with all its safety measures and labeled everything, but it’s home. It’s where Michael feels safe, understood, and loved.
To other parents on this journey: your solutions don’t have to be perfect. They just have to work for your family. And if you find yourself buying binder clips in bulk or becoming a regular at the hardware store, welcome to the club. We’ve got your back.
P.S. If anyone needs recommendations for locks, labels, or where to buy industrial-strength binder clips, I’m your guy. Seriously, I should probably start a consulting business at this point! 😉
Transcript
Mike Carr (00:04):
This week we’re going to talk about something different than just making sure everyone has fun. And the reason I thought it was worth taking a little bit of a segue is it’s hard to do that, right? It’s hard to make sure that everyone, everyone is having fun. But one of the ways to do that is setting up your environment, your home environment the right way. That’s what we’re going to talk about today. There’s one rule that sort of overrides all the other rules. When you think about your space for your severe son or daughter at home and everything you need to put into that space, what do you think that one first and foremost rule might be? Lemme tell you a story. So our son loves to swim, and so a few years ago he was out in the pool swimming, having a great time, and he does that fairly frequently during the summer, and so we weren’t paying that much attention to him.
(00:52):
And all of a sudden he screams, he’s like, oh my gosh, Michael never screams when he hurts himself or when he gets hurt. He might actually laugh, he might whine. He has a whiny noise, it’s usually delayed, but he just never screams. And so when we heard that screaming, it was all attention to him, what in the world is going on? And we saw him on the side of the pool near the skimmer, and he had a white chlorine tablet in his hand. It’s like, what in the world? How did he get that? So we rush over there and we noticed that a chunk of the white chlorine tablet was actually missing and that he had some white powder on his lips. He like, oh my God. He had taken a bite of the chlorine tablet and swallowed it because he has pica behavior, he tends to pick up everything, and he evidently stuck his hand into the skimmer, reached down to where the chlorine tablets were pulled one out and taken a bite of it.
(01:39):
So he’s just screaming. But fortunately, Kay, my wife, in all her wisdom and being proactive, they put a bunch of phone numbers on the fridge in the kitchen. One of those was poison control. So we called poison control and they said, didn’t drink a lot of milk. The more milk the better, because evidently chlorine is acidic as that acid, and you need something to counteract that. So we got enough milk down him that he stopped screaming, but he cannot make a sound for three full days. And we were worried that the chlorine had permanently damaged his larynx, his vocal cords. Well, he started making horse sounds and finally his voice came back and everything else. But the lesson there is safety in any home environment, whether that’s inside or outside, is paramount. Now we have lots of locks and we have a lock, again for safety reasons that keeps him from getting elsewhere in the house where we may not know what he’s getting into.
(02:30):
We have a lock on his outside door, which I think I’ve talked to you about before. And there’s five layers of safety. We have a smart lock, then we have a chain above the smart lock. And the smart lock has an app associated with it. So somebody opens the door, we can actually see on our phones who’s opening and closing the door. There’s a sensor at the very top of the door that goes off when the door’s open. It sounds an alarm upstairs. So we know someone’s entering, exiting. We even have a camera in the corner of this big room that looks at the door so we can actually watch who’s coming in and who’s leaving. And so locks inside is another way to sort of manage the environment and make sure that it’s as safe as possible. We also have locks on cabinets. So he might have certain puzzles or certain games that they’re small pieces and because he puts things in his mouth and might swallow them cause him to choke.
(03:26):
So we have those in locked cabinets. We might do other things to prevent him getting into an area that’s problematic underneath the sink. In the bathroom, it’s not really a lock. You can sort of see, if you’re watching the YouTube video, you can see this video where we’ve got a little latch underneath the sink, and so he can’t open that himself. And the reason we have that latch there is we have in there things like deodorant, antibody cream, hand cream, even toothpaste. You say, why in the world do you need to lock that stuff up? Guess what? He’ll open his deodorant. He’ll take a bite right out of his deodorant stick. It’s like, oh my gosh, what’s he doing toothpaste? He’ll suck all the toothpaste right out of the tube. So we have to keep that kind of stuff locked up so he can’t get into it without somebody there and making sure that he is not going to eat his deodorant or suck all the toothpaste out of his toothpaste tube.
(04:18):
He also likes to eat not just toothpaste, but all kinds of regular stuff. So we have a lock on the kitchen door and you can see that in the video if you’re watching it. We also have a lock on the refrigerator down below as well as up above so that he can’t get into the refrigerator unattended. And you go over to the pantry, you’ll see a lock on the pantry door. So he can’t get in there. He just won’t be able to control himself. You think about setting up an environment for his success and his independence, taking that temptation of food away is really important. Another thing that’s in the kitchen, of course, is the kitchen sink. He has a craving for water. And this is interesting, your son or daughter might too. A lot of autistic individuals actually have a gene flipped. At least this is what the research that we’ve seen says.
(05:02):
And it does create this almost insatiable desire to drink water. So if we leave Michael unattended, he’ll drink so much water that he has to go to the bathroom every 15 minutes or when he is out and about, even if he has training pants or diaper on, he’ll wet through all that before we can find a restroom for him. So we have to limit his water intake plus drinking too much water. We found out Mike Dute the effectiveness of all his anti-seizure medications. He’s on four different ones right now, and so he starts having more seizures because he’s drinking all this water, which dute the effectiveness of his medications. Oh my God, got to be kidding me. So we lock him out of the kitchen, and if you go back in the bathroom underneath the bathroom sink, we’ve installed these thumb valves. So you can just take your finger and very easily close off the water flow to the cold water and the hot water and the sink.
(05:45):
So even if he gets in there and he turns on the water and he’s got his cup, tries to drink out of the faucet, nothing’s coming out. Then if you move into where the toilet is behind the toilet, we’ve also got one of these thumb valves installed. Not that he’s going to drink water out of the toilet, but he loves hearing the roar of water. He had us go in there and constantly flush. And so we’re using all this water needlessly. Then moving over to the shower, we’ve taken off some of the handles on the shower door, and you can see a couple of different places where we’ve done that. We’ve left one handle on there and only one so he can open and close the shower door, but not easily. And we put a rug over that handle so that it discourages him from getting in the shower and believe it or not, turning on the shower head and drinking water and making a mess and frenching himself trying to get some of that water.
(06:26):
Of course, he’s ended up breaking the shower doors. Just unbelievable stuff, right? He opened closed. And so we’ve done, and this is a real clue, but if you look down here on the bottom of the shower rail, we have these binder clips, these black clips that you use to take ’em and hold a lot of paper together. Well, we found that if we put some of those on this bottom rail, it prevents him from opening the shower door where it’s going to do some more damage to the shower since he’s already damaged it, the doors are damaged already. And then inside the shower up at the top on the other door, we’ve got a couple more binder clips. So it allows us to control exactly how much he’s opening and closing those doors so he’s not slamming them or pushing on them too hard and ended up wrecking the door.
(07:03):
This looks like a real clue. We understand this is not aesthetically pleasing. And most houses, if you saw a bunch of binder clips on a shower door, you would say, give me a break. What’s going on here? But when you have a severely autistic center daughter, you will do a lot of things that aren’t quite the best approach from an aesthetic. But man, if they work and they’re cheap and you’ve got the parts on hand, baby, we’re going to go for it. So that’s what we did here with the clips and everything. Now, we also try to make what he does during his daily routine, easy to follow. So we move into the closet. Inside the closet, he’s got closet doors, and then he’s got all his shoes laid out down here at the bottom before he goes to bed at night, he has to put his shoes away neatly.
(07:42):
Michael, put your shoes away neatly. He knows what that means. Now, neatly to him isn’t necessarily what neatly for you or me needs, right? You can see if you’re watching the video, he’s stacked his shoes on top of another pair, even though he’s got an open space right next to them on the shelf. But to Michael, he doesn’t really care. Neatly to him is stacking stuff. Doesn’t necessarily mean laying things out side by side, but that’s okay because the next morning when he gets up, he can dress himself. He can go in there and he can find those shoes that they’re actually stacked in a place he knows he put ’em. He can find the two shoes that match and go and put the shoes on himself. So as you guys know, what works best for your child or daughter is not necessarily what you think makes sense, but if it works for them, let it go.
(08:20):
Right? And so we also have labels, we use labels on the outside of cabinets in the bathroom, I think you saw earlier, if you’re watching the video, some of the labels we have on the cabinets in the great room shows what’s inside the cabinets so that both Michael remembers and his colleagues more importantly, can see here’s where his favorite puzzle is or his game is, or whatever it is. And then in his bedroom, he with labels on, okay, here’s where your underwear is, your socks. It helps him when he is doing laundry and putting things away, he puts his socks where the sock label is. He puts his shirt where the shirt labels is, his colleague can check and make sure he is doing it right, and it establishes that routine. So the whole point of this is consistency over time. That over time he’ll get used to putting things away in the same spot, getting them out to dress himself, and it establishes a consistent pattern and habits that he doesn’t have to think about.
(09:08):
So it doesn’t require such a cognitive lift, such a hard, hard effort to make it happen. One of the things he’s learned how to do, going back to the pool example, is before he gets to go out in the pool, he has to put his bathing suit on. He has to go to the closet and get his water shoes out. And you may think this is just overkill to an extreme degree that we’re being so anal retentive and all this other stuff on all these individual steps that does this really need to be down to this letter. And we think it does. And here’s why. Lemme tell you another story. So a few years ago, I took some high school students to a residential facility up north of Austin in Liberty Hill, Texas. And they had about 40 or so residents ranging in age from preschoolers to adults in the fifties.
(09:43):
And they had a pool, an outdoor pool that was really nice, but they kept it locked for obvious reasons, had high fence around it. And so during the week, the residents were sort of told that, well, you got to wait till the weekend for the pool day. And so we came out on a weekend, it was a hot summer, Texas summer on a Saturday, and we got out there and the staff said, Hey, how would you like to help us get the residents in the pool? This is great. Sure, a bunch of high school teenagers, something we could handle, right? Well, we didn’t know what was fixing to happen. Oh my god. So one of the staff members there opens the gate, unlocks and opens the gate. You’ve seen these videos of soccer matches where it’s this avalanche of people and they’re running on top of one another.
(10:20):
That’s what this was almost like, that all these residents had lined up. They’re super excited about getting in the pool and they sort of knock you over going through this gate. And many of them had shirts on top of their suits. If there were gals shorts on, if there were guys underneath their top of their suits, a lot of ’em had shoes on. They were so excited, didn’t make any difference. They started jumping in the pool. So here you have these adults clothed with shoes, thrashing and swimming around the pool. One of the guys, a young teen did just the opposite. He was so excited. Not only did he take his shirt, his shorts and his shoes off, he took his bathing suit off and then he hops in the pool stark naked. Not a niche of clothing. So I was like, oh my God, we’ve got all these people in the pool, some of whom really need to get their clothing off heavy, and one guy who doesn’t have anything on.
(11:04):
So a lot of effort, we get everybody out of the pool except for the teen who was naked. He would not get out of the pool. And we found out later that he had had this behavior in the past and knew that if he got out of the pool, he was not going to be able to get back in the pool, that that was his punishment. So he would not get out. And so out for a lot of coaxing and forceful, you better get out. He reluctantly got out, but not until he showed his displeasure. Guess what he did? He pooped in the pool.
(11:34):
So one of our high school students being very industrious, immediately found the leaf rate, one of these big long poles that’s got the net for the lease and tried to get out as much of what he left in the pool as possible, but we could not get it all out. It was just impossible. So guess what happened? The pool was closed for everybody for the rest of the day and probably a whole weekend, I don’t know. But they had to put chlorine and all kinds of chemicals in there to clean up the mess. And so everybody was bummed out and it’s like, okay, what do we do now? So we redirected, right? We played hide and seek outside, and we did some other things that were sort of fun, but it was still sort of a downer, as you can imagine, that we didn’t get the pool thing.
(12:08):
And so my point, you have the right protocols in place if you have the right environment in the home where folks develop those habits because everything’s organized, everything’s labeled, everything’s nice and clear. It makes a big difference in avoiding that kind of situation that we just had. Now, lemme talk about a couple other things with respect to the home environment that have really made a difference for us. One of those has to do with redundancy. Things like pools. You can’t really be redundant. You’re not going to have a second pool someplace, but there are other things you can be. So for instance, our son loves playing music. He loves these little shuffles, these old small shuffles that the old fashioned ones that all you have the, but they run out of batteries because constantly listening to it. And so we have several of those. We have backups or redundancy.
(12:55):
So if one shuffle is misplaced for a while or runs out of power, we’ve got another shuffle so he can keep listening to his music, which soothes him and helps with so many things, believe me. Okay, on computers, we actually have two PCs on opposite ends of the room. One has a visual schedule on it, the other one has one of his educational games that he might play. So the colleagues can come in and do the visual schedule while he’s playing a video game or whatever. But both computers have all the same software. So if one of them crashes for some reason and they can’t fix it, the colleagues can’t fix it, Kay’s going to have to come down and reboot it and figure out what went wrong. They have another computer they can go to and get the visual schedule off of that. We also have the visual schedule on iPad.
(13:33):
So when he’s out and about, he has some idea as to what’s fixing to go on, and it’s got all his icons that can communicate. We have two iPads, so we have a backup to the iPad. And so this idea that everything can be backed up in some cases, like with the locks. So security, we’ve got five levels of redundancy or backup. In the case of the visual schedule, we have the two computers, plus we have an old cardboard thing with Velcro stick on images. That worst case, we can have that as a backup if we, for instance, lose power, which has happened, right? Every now and then, especially in Texas, a hot summer day, all the power goes out. It’s out for hours because there’s too many people trying to run their air condition. So what do you do? Well, the computers are down.
(14:09):
We only have backup power that lasts so long. So then you bring off all of the old fashioned stuff, the visual schedule that’s on the cardboard with the Velcro things. So I think to conclude, there are lots of other things that we’ve done in our environment. I might do another episode if it’s useful, talk about some of the other things. But the biggest thing I think, is to be proactive, to think about what are the key rules. And the two that I’ve talked about today are safety number one, it’s number one, safety and number two, which is sort of pervasive, but I think it’s, Kay brought this up. I think it was brilliant because I hadn’t thought of this. Make the environment structured in such a way to help everyone be as successful as possible, including your son or daughter. And so that includes organization, that includes building habits, that includes all other things that we’ve talked about. But if you can do those two things, make sure everybody’s safe, and then set the environment up so that folks are successful and your son or daughter grows in terms of their independence and ability to do things on their own, we think you’re headed in the right direction. Talk to you some more next week. See you.
