Your weekly dose of information that keeps you up to date on the latest developments in the field of technology designed to assist people with disabilities and special needs.
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Hi, this is Jessica Barker and I’m the founder of Friendili, and this is your Assistive Technology Update.
Josh Anderson:
Hello and welcome to your Assistive Technology Update, a weekly dose of information that keeps you up to date on the latest developments in the field of technology designed to assist individuals with disabilities and special needs. I’m your host Josh Anderson with the INDATA project at Easterseals Crossroads in beautiful Indianapolis, Indiana. Welcome to episode 485 of assistive technology update. It’s scheduled to be released on September 11th, 2020. We have kind of a special show today. Our guest is going to be Jessica Barker, and she’s the founder and app designer for Friendili, an app that aims to help parents of individuals with disabilities connect and be able to share stories, ideas, and just create a support system. But in honor of our interview today, all of our news stories are actually related in some way, shape, or form to kids. Now let’s go ahead and get on with the show.
Josh Anderson:
You find yourself with a little bit more time on your hands. Maybe you’re really busy and only have a little bit of time to listen to podcasts. Or maybe listening to this has you thinking, “Well, what about this? What about that?” Well, if you’re short on time, or if you have questions about assistive technology, we have other podcasts that might just fit your needs. The first one is Accessibility Minute. This one minute long podcast gives you a little taste of assistive technology and really wets your whistle to get you to go out and find out more about a piece of technology and how it might help those you work with, yourself, or maybe a friend or family member.
Josh Anderson:
If you happen to have questions about assistive technology, we have Assistive Technology Frequently Asked Questions, or ATFAQ. The show is hosted by Brian Norton and features yours truly along with Belva Smith and Tracy Castillo, as we all talk about assistive technology with questions that come in from email, phone calls, and other means. We also don’t always know the answer, so it’s very important that we have listeners that can help us out with some of those questions, because while we like to think every once in a while that we may know everything, we’re proven wrong almost daily on that one. So if you’re looking for more podcasts to listen to, if you’re short on time and need a really quick podcast, or if you have questions about assistive technology, make sure to check out Accessibility Minute and Assistive Technology Frequently Asked Questions wherever you get your podcasts.
Josh Anderson:
I can remember when our youngest was born and the joy of going and having the ultrasound and being able to see her in there and get an idea of what she might look like, know that she’s healthy, that her heart’s beating, and I guess even finding out that she was going to be a she. But what is the ultrasound process like for someone who’s visually impaired, who can’t visually access that little bouncing gray thing on a black screen that we all see whenever we have ultrasounds? Well, I found a story over a babygaga.com, and it’s titled “new technology allows blind parents to ‘see’ their babies,” and the see is in quotation marks. It’s by Katrina Butcher and talks about how a hospital is actually using 3D printing to give blind parents a 3D model of what their baby might look like from what they find in the ultrasound. So it’s a pretty neat article here, and it actually talks about how this all came about, which I found to be one of the most interesting parts of this.
Josh Anderson:
It says that the idea to actually 3D print these children while still in utero came from John Hopkins and they were using it to look at the spines of babies who possibly needed surgery for spina bifida. So apparently this kind of surgery doesn’t cure spinal bifida, but it can make a little repair before the baby is born that can maybe help them not have so many adverse effects. But this kind of surgery, you actually have to go into the womb while the baby is still in there and perform this surgery, so you can imagine not just how you’re dealing with very small parts, but how perfect you pretty much have to be with that. So what they do is they create 3D models of the baby and allow the doctors to practice the surgery before it actually took place. And believe me, I’m not a surgeon in any way, shape, or form, but I feel like anything, if you can practice it at once or twice, makes it a little bit easier whenever you get in there and do it.
Josh Anderson:
But this inspired researchers to use that same idea for blind parents expecting a little baby. It says that currently John Hopkins is the only hospital offering such a practice, so that when you do get that 3D model of the baby, it is just the face, it does not have the whole body, but you can actually get a little feel for the face and maybe have an idea of what your baby’s going to look like before they’re born, and you can find out for yourself. We’ll go ahead and put a link to this over in the show notes, but I just thought it was neat, the new ways that they’re using 3D printing, especially for individuals who are blind or visually impaired. Well, I guess really they’re using it for all kinds of things, but I really found this interesting how it was an amazing accommodation made to help these surgeons be able to perform this surgery a little bit easier and with a little bit more practice, but how they turned around and used that technology in a whole nother way to help folks take a look at their baby before the whole world gets to see them.
Josh Anderson:
Our next story comes to us from statesman.com and it’s written by Leslie Baseman. It’s titled “mom creating adaptive clothing line for kids.” We talk a lot about technology that really can help kids, parents, individuals with disabilities, caregivers, and all those kinds of things with accessing technology. But if we really think clothing is something that is definitely a need… I know in the time of Zoom, perhaps many aren’t dressing the same that they used to maybe pre-COVID, but at the same time, we do all still need to get dressed. But if you have a child, a family member, or someone else that you’re working with or taking care of with a disability, getting clothes off and on can be a major challenge. So this story talks about Shelly Carter of Texas and her daughter, Berkeley. And Berkeley had an accident a few years ago that actually caused severe anoxic brain injury because of a lack of oxygen, but she did make it through.
Josh Anderson:
But this is left her unable to walk, sit up, swallow, or speak, although she does communicate with her eyes using an AAC device. But changing Berkeley’s clothes has become a bit of a challenge. You imagine trying to get a t-shirt on. She also has water therapy, so imagine trying to put on a swimsuit and other clothes throughout the day. So there’s not a lot of accommodations out there that could really help. So Shelly took it upon herself to start making her own line of adaptive clothing. Talks about just some of the challenges that she has here. It says if she has to remove a tee shirt, she has to pull it around her daughter’s bent arms, over her head, stretches the garment at the neck, and then maneuver it over her hands that are permanently taut. It said by the time that she’s finished she’s sweating with the process uncomfortable for both the mom and the child. She’s tried stretching out the clothes, tries cutting them to fit the needs. But as a result, she’s limited to really just wearing stretchy pants or pajamas.
Josh Anderson:
It talks a little bit more about the water therapy and having to try to put on a bathing suit. And this, imagine, just because her daughter is on a feeding tube, trying to get this on around everything and really be able to have the child be comfortable, as well as have the parent be able to actually maneuver these kinds of things. So there really just wasn’t anything out there. So like many of our stories that we have on here, she saw a need and found a way around it, which I believe you’ll hear a little bit from our interview later on. It says that her line accommodates children with irritable skin, avoids Velcro, seams, or tags that could scratch, or mark. It says that Carter fashioned a diaper that resembles underwear that can aim to preserve the self-respect of older children.
Josh Anderson:
There’s buttons on the shoulders of shirts, allowing the article to be pulled down instead of over the head, especially if we think for some kids with special needs, just pulling that over the head can really cause a lot of stress and anxiety. It says that jackets and long sleeves are made with magnets so they can easily be removed without having to really be pulled down the arms or onto the arms. Says that she’s also currently developing a blanket with snaps that can accommodate going over a wheelchair. And just in time for the season, it looks like adaptive Halloween costumes are also on her drawing board.
Josh Anderson:
It’s really inspired, not just by her own needs, but also by other parents of children with special needs at different therapy sessions. She saw how much they were struggling and how uncomfortable they were as well as how uncomfortable their kids were says. It says this adaptive clothing line has actually been noticed by some famous people, including Selma Blair, who was diagnosed with multiple sclerosis a couple of years ago. She’s currently raising funds to see her project go to fruition through a GoFundMe page and other ways. It says here, if you’re interested, you can look them up. Search for “Peace, Love, and Berk,” B-E-R-K at GoFundMe if you do want to get involved, and we’ll put a link to this over in our show notes.
Josh Anderson:
But again, clothing is really one of those things we don’t think about and we kind of take for granted. Having a little one who does not have any special needs, they’re still not very easy to dress, so whenever you add that in it causes stress upon the parent upon the child can be very uncomfortable, and of course, depending on how the individual ambulates, different seams, buttons, and things like that can really cause some irritation to the skin, pressure sores, and other problems. Very cool, and we really do hope that Carter can end up bringing this to fruition and maybe we can have some more adaptive clothing for individuals with special needs.
Josh Anderson:
Our next new story comes from the Detroit News, and this is an opinion piece titled “classroom closures hurt students with special needs.” It’s written by Terry Wilcox and it gets into some of the challenges presented by having to close classrooms due to COVID-19 concerns and fears. Now the beginning part of this article does get pretty deep into Terry’s opinions on closing schools and things like that, but it also does bring up a fact that I think we’ve talked about on this show with different guests and things about just the supports that usually a learner with different needs might have that just aren’t going to be there for those students when they’re learning from home. I mean, granted, their parents have probably adapted to the behaviors and different things, but I mean, they’re also probably trying to work, or maybe even having to leave the home and go to work, and then the child is left to actually learn on their own.
Josh Anderson:
So a lot of times a student may have a device or something that they learn on at school, but they may also have a helper who spends part of the day or some of the day helping that individual use this device or tailoring their learning to that person’s special needs. There may also be other kinds of things taught in the school such as behavior therapy or other training and support that can really help the child with not just learning the reading, writing, and arithmetic, but also learning how to talk to their peers, how to be part of a group, how to work in a group, and all these other things that just aren’t really possible to be taught from school in some sort of virtual environment.
Josh Anderson:
Now I do know here in Indiana, some schools, even those that are doing all remote learning, some of them are actually opening up their classrooms for special education classes and for learners who need that extra support. I don’t know what the rules are on that, and of course not all schools are able to do that, but I did think it was great that they are trying to be able to get these kids the training and the help that they need. Reading on down in the story, it has a part of a blurb from a Jackie Baker, an autism therapist in New York City. And it actually says that it could take up to a year to remedy maladaptive behaviors that disabled children have picked up due to extended breaks from school. So we really think some of the folks that we work with, know, or come in contact with may have behaviors that are really helped out by routines, by consistency, and that can be a whole myriad of disabilities that that can assist.
Josh Anderson:
So when you take that away, when you just have the student being at home all the time, and maybe spending some time learning, spending some time doing other stuff, and then maybe spending some time completely to themselves because mom and dad have to work, again, either in the home or outside the home, it leaves them with little to do, and that can of course build up extra energy and other things that can make learning a whole lot harder. And this doesn’t even get into those folks that live in maybe rural communities that do not have access to the internet to be able to take all these classes online, to be able to keep up and not fall behind. So there’ll be a lot of challenges presented by COVID-19. Those challenges affect the economy, of course unemployment, schools, children, and other things that probably won’t really be seen or known for many years to come.
Josh Anderson:
And of course like everyone else, I hope that someday this just kind of goes away and we can all talk about that time when COVID-19 changed the world around us. It is good that folks are thinking about kids and what we can do to help them, but we have to make sure that those kids with those special needs that need those extra supports aren’t forgotten and don’t fall even farther behind than they might’ve been before. We’ll put a link to this story over in our show notes. You can go and check it out. Again, it is an opinion piece, so just remember that any opinions expressed in this aren’t necessarily the opinions of this host or this show, but I do think it’s important just to keep us all thinking about those kids as they have to learn in a whole new way.
Josh Anderson:
So piggybacking off our last story and really a great lead into our interview, found a story called “navigating uncharted waters: raising a child with special needs during a pandemic.” This is from Fox 24 WGXA news out of Georgia. It talks about some of the challenges presented by COVID-19 to students and to teachers at the Georgia Academy for the Blind. And it talks about as the school moves to partially online, partially in person classes, just how does that affect students with visual impairments? So if you really do think, if you’re showing everything on the computer, depending on the visual impairment, the student may or may not be able to see those things.
Josh Anderson:
Now, something that at least in talking to the school for the blind here in Indiana is, these schools are maybe uniquely equipped is maybe the best word to be flexible, and they always have had to be just because of the students that they teach have just so many different levels of visual impairment that they’ve had to adjust those classes to teach each student in their own way, but make sure that they all get the information and the education that they need. It says of course, for the in person classes, they’ve done different things, like make sure that all the staff members wear gloves and masks, they do temperature checks for anyone that enters, of course hand sanitizer is used freely, and then touch surfaces are disinfected frequently.
Josh Anderson:
And if you really think sometimes in these schools, that’s different than what it might be in a school that teaches individuals who do not have visual impairments, just because getting around and things, sometimes you touch walls, handrails, and other things of that sort to make sure that you’re getting to the places that you need. They’re also making sure that students who read braille are given their own equipment to avoid touching each other’s devices. So no more sharing equipment and things like that. It actually says that right now a third of their students have elected to take all their classes online. There’s something great here from Cindy Gibson, who is the superintendent of the Georgia Academy for the Blind, and it says that whenever you’re visiting a teacher’s class, they’ll have students there on site, but then in the same class, at the same time, there are students that are remote learners and they are actually all able to talk to each other, by the way they have it set up.
Josh Anderson:
She actually says, if you stand outside the door, you don’t really know who’s actually in person and who’s talking remotely. Says that the school only has 88 students in total, so the teachers are able to individualize the lessons for each child. It also says, and this I think is very important for really all different kinds of learners during this time, that they’re helping to train families on how to help the students through school. So really a train the trainer kind of model, which I think is really important, not just for parents of individuals with disabilities, but parents of any child trying to learn in this new environment, which will probably stick around for a little while.
Josh Anderson:
Also says teachers are able to send home physical objects that students might need to touch to understand. So if you really think a physical representation of something, kind of like we talked about in the earlier story about ultrasounds. So again, it’s amazing sometimes how these schools are just very well equipped to change their learning profile because they’ve had to for the different students that they’ve taught over time. And the story ends with a quote at the bottom, which I think is just a wonderful lead in for our interview coming up in just a moment. It says that there’s a saying it’s hard to raise a child and it’s harder to raise a child with special needs, which will lead us right straight into our interview.
Josh Anderson:
As the parent of an almost two year old and the step parent of a 12 and 19 year old, I can attest that parenting is not easy. No matter how well you think you have it all under control, something will just come along and prove that you’re really just making it all up as you go. But for parents of individuals with disabilities, this can be exacerbated as they deal with new challenges, diagnoses, service providers, as well as all the other challenges of parenting. Well our guest today is Jessica Barker, the founder of Friendili, who’s working to create a support system for parents to work together, share knowledge, and overcome these challenges. Jessica, welcome to the show.
Jessica Barker:
Hi there. Thank you for having me.
Josh Anderson:
I’m so excited to have you on and talk all about this, but before we start, can you tell our listeners just a little bit about yourself and your background?
Jessica Barker:
Sure thing. So I live in the UK. I’ve been working in public relations and marketing and journalism for the last 10 to 12 years, and I’ve recently moved into tech. I’m using my marketing background to help me create a piece of technology that will help parents in a similar situation to myself.
Josh Anderson:
Well you kind of started talking about it there, but I know that developing Friendili was a personal journey for you. Can you tell us why it was developed?
Jessica Barker:
Sure. So my five year old has a serious congenital heart defect called hypoplastic left heart syndrome, which is effectively having half a heart. We didn’t know about this when I was pregnant. It was a very normal pregnancy ,and it was the day after she was born that we were actually told, “Your baby only has half a heart, and if we don’t operate tomorrow, she’s not going to make it.” Obviously this was an incredibly difficult and crazy time. And from that moment on, we spent nearly six months in hospital. We didn’t get to take her home. I felt extremely lonely throughout this process. Not only were we becoming parents, we were learning how to be nurses and having a crash course in medicine.
Jessica Barker:
One of the things I looked for was a piece of technology that would let me speak to other parents who have been through a similar thing, but who also lived locally to me so that I can meet up with them. And I couldn’t find it. It just wasn’t there. There were lots of parenting apps and things for healthy children and nothing that really spoke to me. So that’s when I noticed that there was a gap, and it wasn’t until Maisie was four that I really started speaking to other parents to see if they also felt lonely and like there was nothing out there for them.
Jessica Barker:
And an astounding number of parents said, “Yes, there’s nothing out there for us.” All the parenting stuff is very focused on the 2.4 family and everything going smoothly, but there’s nothing for when it doesn’t go according to plan. We really liked that, so I led some focus groups and did some crowdfunding to help me build a piece of technology that would help parents in my situation make friends, talk to people who’d been there, and just really find out the information they need to help them along in their parenting journey.
Josh Anderson:
Excellent. You started talking about it right there, but what is Friendili?
Jessica Barker:
Friendili is an app that lets you find new friends in your area, or afar if you like, talk about the issues that matter to you, exchange support with others who’ve been there, and have a wealth of information at your fingertips that helps you with your journey.
Josh Anderson:
And what kind of information is shared between folks?
Jessica Barker:
Things like, I don’t know, if a parent’s struggling with their mental health, for example, signposting to where they can seek support. If they need some equipment, for example, then they can go in and search through a list of charities and organizations that might be able to help them. They can also get the firsthand experience. So one of the things that I went through when Maisie was little is her condition is so rare that there aren’t many people out there to talk to, and when you Google it, it’s just a load of scientific papers. And having that firsthand experience at hand is incredibly valuable.
Josh Anderson:
Oh, definitely. And you brought it up there, because I know a lot of times, especially on more rare conditions, yeah, when it’s scientific journals, you may not understand what half the words in the first sentence even are to really understand exactly what the condition is, but more importantly, how does it actually affect the the child and then therefore the parents? So I can see where that support system can be great.
Jessica Barker:
Yeah. Thank you. The feedback so far has been really, really positive and I’m been overwhelmed with it, really. People saying, “Finally, we’ve got a piece of tech that’s built specifically for us.” Because when you’re a parent of a child with additional needs, it can feel like you aren’t really represented and there isn’t a huge amount out there, so I think people are so far highly excited about it, which is great.
Josh Anderson:
Definitely. I can really see how that can help, because yeah, that feeling of loneliness and this is just happening to me and what do I… That fear of, “What do I do?” Being able to talk to someone else who’s been through it and maybe made some of the mistakes before or found what does work. I imagine that’s extremely helpful for folks.
Jessica Barker:
Yeah, exactly. It exists for normal parenting situations. There’s so much information out there. But like I say, not a huge amount for when your journey is different.
Josh Anderson:
I know you’ve been around for about six or seven weeks now. Where is Friendili currently available?
Jessica Barker:
It’s currently available in the UK and Ireland. I would love to release it in America. I’m just getting the user base up, spreading awareness, and then hopefully I can take it international.
Josh Anderson:
Oh definitely. And probably as more folks start using it too, that’ll help you get some feedback, even make it better, stronger, and be able to take it different places as well.
Jessica Barker:
Yeah, exactly. It’s been really lovely. I’ve had emails from people all over Europe and America, Australia. I think I had one from a lady in St. Lucia. The demand is definitely there, but obviously, like you say, it’s about developing it and making it something really valuable for people. So doing that here in the UK first will help me create something more useful to people everywhere else as well.
Josh Anderson:
Definitely. And talking about development, in looking through I saw you have a very diverse team of your developers and the folks that are helping you with Friendili. Can you tell our listeners a little bit about them?
Jessica Barker:
Sure. So when I was putting together the idea for the app, I was thinking about it would be really beneficial to have on board. And the areas, when I was speaking to parents, that came up quite frequently were mental health, not just of the parents, but of the children as well. So I’ve got a general practitioner who’s very interested in family health. So she gives us a steer on everything from women’s wellness to childhood vaccinations and things like that. But also I’ve got a psychologist, an adult psychologist and an educational psychologist who looks at things in a school setting, which has been really very useful recently with back to school and things, giving members hints and tips on how to help, I don’t know, their autistic child, for example, cope with that back to school anxiety. And there’s an emergency nurse who is very, very good on things like wound care and what to do in an emergency, basic life support. So they all pool their different areas of expertise and help lead the direction of the app and give us good content and tips for the members.
Josh Anderson:
Jessica, kind of a personal question here. What is one piece of advice that you would give to maybe a new parent of a child with a diagnosis?
Jessica Barker:
If there was one piece of advice I would give is to trust your instinct, because even though you might not have medical knowledge yet, your instinct is usually right. And to not let somebody tell you otherwise, because actually mom or dad normally is correct when they notice something that’s not quite right.
Josh Anderson:
Well Jessica, if our listeners want to find out more about Friendili, what’s the best way for them to do that.
Jessica Barker:
So they can go to the website, which is www.friendili.com, or they can find us on social media. So just @ and then Friendili, F-R-I-N-D-I-L-I.
Josh Anderson:
Excellent. We’ll put links to that over into the show notes. Well, Jessica Barker, thank you so much for coming on today and telling us all about Friendili, and we’ll look forward to it expanding into more countries, maybe here sometime in the future.
Jessica Barker:
Yeah. I’d love that. Thank you ever so much for having me.
Josh Anderson:
Do you have a question about assistive technology? Do you have a suggestion for someone we should interview on Assistive Technology Update? If you do, call our listener line at (317) 721-7124. Shoot us a note on Twitter @INDATAproject, or check us out on Facebook. Are you looking for a transcript or show notes? Head on over to our website at www.eastersealstech.com. Assistive Technology Update is a proud member of the Accessibility Channel. For more shows like this, plus so much more, head over to accessibilitychannel.com. The views expressed by our guests are not necessarily that of this host or the INDATA project. This has been your Assistive Technology Update. I’m Josh Anderson with the INDATA project at Easterseals Crossroads in Indianapolis, Indiana. Thank you so much for listening, and we’ll see you next time.