A Duchenne-Friendly Visit
Families living with Duchenne struggle quite a bit when it comes to social inclusion. In general, our society just isn’t familiar with the needs of individuals who 1) have a high fall risk or 2) use wheelchairs or power chairs.
A tough truth about DMD is that the further an individual progresses, the more social isolation he or she – and also the family – experiences. But it doesn’t have to be this way.
Below are suggestions from our podcast episode “Ways to Make a Home More Welcoming for a Duchenne Family to Visit” with physical therapist, Doug Levine (who has almost 10 years of experience working with individuals with Duchenne Muscular Dystrophy.) He discusses accommodating ambulatory individuals, non-ambulatory individuals and also non-ambulatory individuals who have significantly progressed.
To listen to our entire podcast, click here.
Communicate
I think the biggest thing when making a home Duchenne friendly for a visit, is communication going both ways. Like it would be great if you’re visiting your aunt for the holidays and she says, “Hey… what do we need to do to get our house ready for your kids? How can we prepare?” That would be great.
But if that doesn’t happen, then I think it’s important for Duchenne families to say something like, “Hey, we’d love to come for the holidays. But here’s some things that we need in order to be able to stay for the day (or for two days or for six hours, whatever it is).”
I think just communicating and setting up a plan can really help to prepare families and alleviate their stress. Simple things like chatting about the layout of their house, or whether their house is smaller with a lot sharper turns can make a huge difference. Maybe the family can’t even access the house and a new location need to be situated. Maybe just knowing which room everybody will sit in for dinner, or which is the “hang out” room, can help the family troubleshoot before getting tot he get together. So, the more you know and can plan ahead of time, the fewer surprises should happen, and the time together can be more enjoyable for everybody.
Ultimately, planning and making preparations are about helping your loved ones get what they need to access the house. Nobody wants to feel like they’re isolated, or they’re left out, or they have to hang out over here while everybody else is over there. So, just establishing that communication both ways will be a huge help.
Ambulatory
Tripping Hazards Outside
So, if the individual is ambulatory, we want to address whether there are stairs or curbs outside the house. Because if somebody is in the early ambulatory stages of Duchenne, going up a couple of steps might not be a big deal, going through a step up in the threshold into the door might not be a big deal, going up and down a couple of steps in the house might not be a big deal… if your child is reliably ambulatory.
But if they’re a little more into the mid-ambulatory stage, where walking is difficult, then we definitely want to address those things more, you know, like any type of step-ups or thresholds or anything like that.
Tripping Hazards Inside
Once inside the house, anything that’s a tripping hazard needs to be eliminated. If it’s possible to remove rugs or other random things on the floor – dog toys, or bones or other kids toys or Legos are that are generally just on the floor that maybe an able-bodied person might just kind of step around or step over – those things could easily cause a fall for an individual with Duchenne and maybe even a fracture.
Also, make sure that there are clear pathways to the food area, as well. Whether it’s the dining room table, or if it’s a buffet style where you kind of get your own food and then we’re sitting down at a kid’s table or dining room table, just make sure that there’s a clear pathway for them to walk so they don’t have to step over or around things and risk falling.
And then if it’s a big family gathering where there are a lot of other kids – and the kids break off from the adults and they go maybe play downstairs in a basement or somewhere else – trying to trying to find out what that looks like ahead of time. You know, you want them to have the independence of playing, but just spend a little time brainstorming beforehand so that it’s not going to be unsafe for your loved one with Duchenne. Also, if the kids generally are going to go play upstairs or downstairs – if that’s not really changeable – just making arrangements for being able to bring your child upstairs or downstairs so that they can interact and participate and play with other family members might be the way to go.
An Accessible Bathroom
And then I think restroom is kind of a big deal, too. Making sure that it’s easy for the child to get in and out of the restroom is very important. Also, ensure that they can easily reach the sink for hand washing or that there’s a step up to the toilet if needed.
Pets
As for pets, I think that falls under the communication thing and talking with your family members or friends about what the situation is like.
So, let’s say that they have a big dog and it’s really jumpy and your child’s ambulatory but you’re not totally confident about their balance. You’ll need to make a plan for how to keep your child safe around a large excitable dog… especially if the dog is a favorite of the other kids there.
So, you know, maybe ask: is it possible to keep the pet in in a different room during the time? or even just brainstorming together to set up something that works for both sides so that everyone feel comfortable. But yeah, definitely address something like that, like a big dog that might get under foot or might try to jump on him.
Service Animals
While we’re talking about animals… a lot of our individuals with Duchenne – when they get into late ambulatory or early non-ambulatory – they’ve got a service animal with them that helps physically, and also really emotionally as well. If you feel comfortable, you know, when you get there, and everybody’s there, maybe just yell out to everybody, “Hey, attention, just want to let you know, my son has a service dog. Please ask before you pet it” … or this is the reason that he’s here and briefly explain that situation.
On the other hand, some people are not comfortable kind of making that big proclamation. So maybe, see if you can send out an email to everybody. So again, let’s say you’re going to your aunt’s house, or whatever… just see if you can get everybody’s email and send out a quick email, “Hey, we’re bringing along a service animal.” This is what it means to our family, please ask before you pet it, etc. just so everybody knows and understands what that entails.
Non-ambulatory
When addressing the needs of the non-ambulatory individuals, it tends to be a lot of the same thing, but the needs of access tend to be greater. So, if they’re ambulatory, they may be better able to navigate the steps with help from an adult or using a railing, things like that. But when they’re non-ambulatory, a few more changes will need to be made to make the home more welcoming.
Getting into the Home
If the child is in a manual chair or power chair, families definitely need to address those issues of access: can they get in the house?
Is there a way we can put in a temporary ramp? Even if it’s just a thick piece of plywood, or maybe you have a portable ramp or someone you can borrow a portable ramp from. Don’t be afraid to ask your durable medical equipment company, or the wheelchair company, because sometimes they can lend these things out.
I’ve actually had them do that for me. My mother in law’s in a in a power chair and so when they’ve come to stay, I borrowed for a week the company’s portable, foldable ramp, because we have a step from the driveway down to the sidewalk and then also a step going into the house. So it was very useful.
But making sure that we ask: “Okay, you know, my son’s in a power chair? What type of obstacles are there are there any stairs to get in or within the house (or whatever it is). Can we just kind of talk through that or walk through that?” Because you definitely want to make sure that the kiddo can get in the house.
Accessibility within the Home
But then, you want your child to feel comfortable getting around the house, too. So once they get in, if they’re stuck in like one small section, while everybody’s off, running around doing things, that can single them out. That can make them feel isolated, too.
Try to find out: is there a clear pathway from when we get into the dining room to the living room? Is it possible to move a couple of pieces of furniture out of the way so that he or she can get all around and access different areas?
So, there’s all different sizes of wheelchairs and power chairs, but it’s generally somewhere between 24 and 28 inches. So, pathways need to be at least that wide for an individual to be able to navigate a straight path, like down the hall or something like that.
But then you also need room for turns – so from the hallway, getting into the restroom, or from the hallway, getting into the dining room or living room. And it’s, it’s hard to say exactly how much space you’ll need because it’s, it depends on how tight the turn is? Are you talking about somebody that’s 22 years old, that’s larger in size? Are you talking about somebody that’s in a power chair, that’s 11 or 12 years old, that, you know, that weighs like 70 pounds? So you kind of need to sort of figure that out or, you know, you can even kind of gauge that in your own home. But in general, 36 inches wide is probably a good starting point for hallways and doorframes. That gives room to kind of like, you know, swing out and swing around.
And then remember that you’re really asking your family members or your friends to just do their best. We’re not asking them – and it’s not realistic to say like – “Well, can you permanently widen the doors before we come over for Christmas? Or can you, you know, do all this stuff before we come over for Thanksgiving?”
Accessible Bathroom
For a bathroom that your non-ambulatory loved one with Duchenne can use, it often needs to be something bigger than a powder room. You know, you have to remember that we need room for the power chair, if they’re not transferring themselves. We also need room for a second person to be there in front of them to lift and move them over.
So, make sure that we’re finding out ahead of time: Can we get to the restroom? Do you need anything once you’re in the restroom – like temporary toilet rails to help with the transfer? Do you need to bring a sliding board or something like that?
So, if there’s just a powder room available – like just a toilet and sink and not much other space on the ground floor – that’s something that you need to know ahead of time. Again, that might be all we have to work with on the first floor. Usually there’s another larger bathroom available, but maybe not. So, find that out ahead of time, so that you can make arrangements.
When It’s Better to Host at Home
There gets to be a certain point where going out is just too much and too exhausting.
So, at some point, it’s really much more comfortable for the Duchenne family to host events, or – if they have to – stay at home alone. Some families hold very tight to traditions, right? Like, “We always go to Grandma’s for ______” or “We always go to Uncle’s house for _______.” So, for some, the tradition is, is more important than anything, and so they’re not going to want a break from that. So, whether the Duchenne family has an opportunity to host, or whether they spend the holiday alone at home – a lot of that depends on the people in the family and how cooperative they’re going to be. And unfortunately, a lot of different families are just celebrating on their own when they get to that point, because people don’t cooperate and collaborate.
Personally, traditions are important to me, but inclusivity is even more important to me. So, I would rather break the tradition and have my son or daughter feel included than not. And so I would maybe try to come up with another idea that works for everyone. I mean, maybe just doing it by yourself feels isolating to you and feels a little bit sad to you, so you’d like to include other people.
It’s a tough one, because there’s not there’s not a right answer for everybody. I think honesty in this case is just the best thing. And just to say – in whatever way that you feel comfortable getting this out, – “It’s really difficult. We love coming to your house, and we have for the past 15 years. It’s just extremely difficult for us to navigate that now. So we’d like to see if maybe we can have it in our house this year” or “Our family is going to stay at home and do a smaller version of the holiday. We’d love to have family join us either on the day of the holiday on that day, or the next day.” You’re really just trying to see what works for everybody.
Also traditions to have had to start somewhere, right? Somebody had to be the first one to do it. So maybe this year – for the first time in 20 years – you know, we’re doing Thanksgiving at Aunt Betty’s house… and that’s the new tradition for us. I think it’s being open to that traditions are important, but so is including as many people as possible because that’s how traditions get started a lot of times, right? Like something new happened, and the new member of the family was introduced – or whatever it is – and now we’re doing it this way. And then that’s the tradition going forward.
Need Help Brainstorming?
If there are specific things that come up, people can reach out to me. I’m happy to try to troubleshoot.
You know, we joke about this all the time: “It depends.” But everybody’s situation is different. And people have different abilities or different equipment, or different house layouts… one answer doesn’t satisfy all situations. So I’m happy to troubleshoot if you’re going to a family member’s house and need help.