Kay Carr gives insight and real-life examples of the ways she and her husband, Mike, have modified their son’s kitchen space to be a safe, hazard-free area. Mike and Kay Carr are the founders of Autism Labs and parents of Michael, their thirty-three-year-old son with low-functioning autism. With the help of the University of Texas Special Ed & Speech Departments, Kay and Mike have researched and implemented effective at-home systems to promote Michael’s safety, communication, and independence. Follow along on our “Autism at Home” series to learn simple and effective DIY home modifications that will help parents and caretakers such as yourself on this journey we share together, providing valuable insights into in home care for autistic adults.
Balancing Independence and Safety for Michael: A Parent’s Perspective
In autism labs, we believe in the power of real stories and practical strategies that help families navigate the challenges of raising autism. Today, I have the privilege of sitting with Car Carr, who offers a unique perspective on the fine balance between his son, Michael’s journey, promoting freedom and ensuring security. Kay’s story is a commitment to find love, patience, and solutions that empower Michael to live a full life, even as they navigate their autism complications. Together, we discussed how they have created a supporting environment that allows Michael to enjoy freedom while maintaining potential risks – especially when it talks about their access to electronics, food, water and holiday activities.
The Struggle of Independence and Safety
As Kay shared, promoting Michael’s freedom is at the core of his approach, but it is not without its challenges. Michael, like many children on the spectrum, goes to fix some things – whether it is a snack, a puzzle, or a glass of water. Without boundaries, these determinations can be heavier and different from learning or communication opportunities. Michael’s world is filled with repeated behaviors, which can make it difficult for him to engage in new experiences. The work explained how to balance the need for freedom with a structure that ensures its safety. He learned that Michael gives clear guidelines, while still promoting his autonomy, is important.
Perseveration: The Challenge of Repetition
One of the main challenges in Michael’s life is firmness – the tendency to decide on specific objects or activities, even if they interfere with other tasks. For example, if Michael is focused on a puzzle, food or water, it may be difficult to redirect it. Their behavior is more about reaching things that are more educational or social than being engaged in activities. This is the place where structured access to goods becomes necessary. Kay has found what can happen around Michael and when they can gradually redirect their attention without creating frustration, then creating boundaries. This helps Michael to live with other functions, promoting the widespread sense of learning and exploration.
Safety First: Protecting Michael in the Home
Security, without a doubt, is the highest priority of the Carr family. Kay shared many stories, where unrestricted access to some areas or objects could cause serious risk. The kitchen, in particular, has been a hotspot for potential danger. For example, Kya explained how Michael has an affinity for snacking and drinking water. If left uncontrolled, he can help himself in the fridge and pantry repeatedly, causing excessive eating and drinking. To avoid this, the family locks the fridge, pantry and kitchen doors, making limitations that allow Michael a structured routine for food and snacks. But the kitchen is not the only place where safety needs attention. Kay also mentioned how Michael has a tendency to wander – he loves the cars in the driveway with greeting cars, to visit the garbage truck, or simply search out. While their enthusiasm is ending, it also causes risk. To combat this, the Carr Family has taken an active approach, adding significant locks to the doors to prevent Michael from uncontrollably wandering. And although Michael enjoys external activities, they ensure that he always supervises, which not only protects him, but allows him to enjoy the outside world in a safe and structured manner.
Communication as a Tool for Independence
Kay’s approach is truly inspiring because her safety measures also become ways for Michael to communicate and learn. Instead of just keeping things away from him, the family uses boundaries to teach Michael how to ask for what he needs.
Kay described how Michael uses a communication device to request things, activities, or permission to go outside. For example, if Michael wants a snack, he has to use his device to ask for it. As soon as he makes his request, the family responds, which reinforces this behavior. This not only makes Michael more independent but also teaches him how important it is to express his needs meaningfully.
This structured way of communicating also helps Michael learn responsibility. He understands that getting food, having fun, or going outside depends on him communicating responsibly. This has helped him learn routines and expectations, which has helped him become more independent and advocate for himself.
Breaking the Cycle of Repetition
Kay also mentioned how Michael sometimes gets stuck in loops of doing the same thing. Like, if he’s really into a puzzle or a snack, it can be hard to get him interested in anything else. So, they’ve found that planned breaks and gently nudging him towards other things really helps.
If he’s just fixated on something, Kay and her husband will try to gently guide him to something different. Maybe it’s another toy, or a little learning activity, or even just a quiet moment. These little changes help him break out of those repetitive cycles and give him a chance to explore other things and learn new stuff.
The Role of Leisure Activities
Downtime is a big part of Michael’s day, and it’s important for him to relax and express himself. But Kay pointed out that too much time with electronics or other fun stuff can become a problem.
So, they’ve found a good balance by scheduling his downtime throughout the day. This way, he gets to enjoy his favorite things without them taking over everything else. For example, instead of just zoning out in front of the TV, they encourage him to play with his toys or listen to music. This structured approach helps him balance his relaxation with other learning activities.
Creating a Program-Friendly Environment
Kay says the secret to Michael’s progress is creating a home that’s both structured and supportive. By using these “program-friendly” limits, they’re not just keeping him safe, they’re also giving him the tools he needs to grow and learn.
Kay also shared some helpful tips for other families dealing with similar situations:
- Take a look around: Figure out what might be risky or distracting in your home and fix it by setting some boundaries. This might mean putting locks on things or setting aside certain areas for specific activities.
- Encourage him to talk: Use these safety measures as a way to teach him how to ask for things and speak up for himself. When he communicates well, respond right away to reinforce it.
- Balance freedom and structure: Give him chances to be independent, but also have clear rules that keep him safe and focused.
- Be patient and stick with it: Changes take time, and doing things consistently is super important. Keep following your routines and strategies, even if it feels like progress is slow.
A Family’s Commitment to Growth
The story of Kay is a powerful reminder of the importance of patience and dedication. Using thoughtful strategies, his family has created a world where Michael can safely detect, communicate and thrive. While the journey continues, the awards are clear: a more independent Michael who inspires everyone around him. As Kay said, “It is about finding out what works for Michael and ensures that he has equipment and support to succeed.” Her family’s commitment to development and their approach to combining freedom with safety is a beacon of hope for families facing equal challenges. If you are facing similar experiences with a loved one, we hope that this story provides useful insight and encouragement. Together, we can create a bright, more inclusive future for autism and their families.
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Promoting Safety and Communication at Home for Adults with Low-Functioning Autism
Hey, guys, it’s Haden with Autism Labs. And today I interviewed Kay Carr, who is Michael’s mom, and we talked a little bit about promoting independence and communication for Michael. And we also talked about out how free access to electronics and to food and water and to his leisure activities can also lead to some challenging behaviors that don’t actually promote his independence and his communication.
So here’s Kay talking about what that leads to and what it looks like to provide a program-friendly way to restrict these things.
Why does Michael need restricted access to certain spaces and resources?
Well, even when he’s supervised, he needs a little bit of this because… several reasons: one, he perseverates on things. So if he gets in his head that he wants a puzzle, or he wants something in the kitchen—mostly food, sometimes water—he will excessively attempt to access it, over and over and over again, and it helps break that cycle so that that distraction is eliminated, because that becomes a terrible distraction and he’s just revisiting the same thing over and over.
Some of the reasons are safety reasons. We’ve got to be sure that he’s safe. So that’s a second big reason.
The other thing is the eloping. If the back door is open, and somebody drives up the driveway, he loves to go run out and greet the car. He also will go down and visit the garbage truck or whatever’s in the alley. So there’s all kinds of problems with that. It’s those sorts of things.
Tell us about the access restrictions in the kitchen.
The kitchen is restricted access because Michael will help himself to the water and the food all day long if given the option.
We’ve locked the refrigerator because he eats in the kitchen and he will get up during a meal and try to access other items that are in the refrigerator.
We have a lock on the oven because I’ve been in there when the oven was on 500 degrees before and he just accidentally bumped it. All those flat panel displays have their issues.
Then we’ve got the lock to the pantry. It’s a full walk-in pantry and he has many snack selections in there. And he always wants a snack. So that’s just a simple control access point for that.
Then on the way out of the kitchen, we have a key lock on the kitchen door so that he cannot escape. Once he’s all settled for a meal and he’s sitting down and eating, or more likely he’s doing the dishes, he sometimes tries to elope. And so the idea there is he needs to request the access to whatever it is and be granted it rather than just running out the room. So the key lock prevents him from just running out of the kitchen whenever he feels like it.
