>> kathryn wyeth: okay so welcome to assistive technology for parenting with a disability. i'm so glad you were ableto join us today. i am going to switch to the next slide.as many of you know, michigan disability rights coalition is a disability justice movement working to transform communities. our tag line is "with liberty and access for all." and we work to make sure everyone is included in their chosen communities. next slide... so why did we decide to focus on assistivetechnology for parenting? as you know, there's as many of you i'm sure areaware, there's a lot of discrimination
about being a parent who has a disability.and yet there's a lot of parents who have disabilities. current research reveals there's4.1 million parents with disabilities in the u.s., which is roughly 6.2 percent ofall parents with children under the age of 18. and the rates are even higher for someof the subgroups. for example, almost 14 percent, american indian alaskan native parents and 8.8 percent of african american parents have a disability.really think that this, that these statistics are likely underestimate how many parents there really are with a disability because many parents don't identify as having a disability even though they do. the other thing with discrimination is there's a, there's a a genuine fear of asking for help.
and there's good reasons for this. removalrates where parents have a psychiatric disability is found to be as high as 70 to80 percent, where a parent has an intellectual disability it's between 40 and80 percent, and in families where the parental disability is physical, 13 percenthave reported discriminatory treatment in custody cases. parents who are deaf or blind report extremely high rates of child removal and loss of parental rights. so parents with disabilities are also more likely to lose custody of children after a divorce,have more difficulty accessing reproductive healthcare, and face significant barriers to adopting children. and this is all if you would look at yourresource handout, this information is
under the first subheading, which is advocacy, and it was from an american bar association article, although i believe theygot the statistics from this excellent report called rocking the cradle, ensuringthe rights of parents with disabilities and their children. so there are some groups that have formed in order to support parents with legal rights, and the longest-standing one that i'm aware of is through the looking glass, which is based in california. and they do have a national legal program. so i put that link in there. if you know a parentis experiencing trouble, then this is a good organization to contact, i think.so there's also some specific organizations
for parents with disabilities, and that's the next heading on your resource handout. the disabled parenting project is a new organization. they have a brand new website that just went up a few weeks ago. they've been interviewing parents with disabilities, including melinda, who you're going to hear from in a little while. so the problem with the discrimination and the fear of asking for help and just the stigma around being a parent and having a disability is that there's been a lack of product development. we found this great wheelchair baby carriage stroller that attaches to the front of a wheelchairthat somebody did as a senior project and an engineering project. however, it neverwent to development. i suspect the
developers, the manufacturers, just don'tthink there's a market for it. which is too bad, because there obviously is a market for it. so i'm going to switch to the next slide andturn the microphone over to my very competent coworkers. >> laura hall: hi, everyone. this is laura. i'm just going to start with a little overview of some of the things that we'regoing to be talking about today. one of the things that we've worked really hard to doin this webinar is represent parents with all types of disabilities. so you're goingto be hearing from parents with mobility disabilities, from a parent with hearing loss,a parent with low vision, and a parent
with a mental health diagnosis. and we also have some assistive technology for people who are neurodiverse. and by neurodiverse we mean has different ways of processing and taking in information. andwe'll go a little bit more into that later. we're going to focus on tasks that are more specific to baby and childcare rather than general daily living. althoughyou'll find that some of the specific technology that we're going to highlight isassistive technology that a person would use for daily activities of living anyway.we're going to start with babies and small children. and we have a little bit of content on older children and teens. of course once kids become more independent there's less need for some of the at. so
there's a little bit more of a focus on younger children in this webinar, but we do have a few things that focus on older children as well. so if we could, move to the next slide, please? we're going to start with melinda's story, and we have that on audio, if you could just give us a moment... here we go. >> my name is melinda and i am 35 and i have a spinal cord injury and also have both of my legs amputated, which is sort ofa post-pregnancy piece, but it does affect my ability to parent now, so that's in there.and i also have two mental health disabilities. i have anxiety and depression.so that's a little bit about me. i'm very
into social justice and disability justiceand disability activism. and that's a huge part of my life that i am sharing with mychild which has been really fantastic. ever since i was little i had a dream of having a young daughter. i picked out a name for her by 5th grade, i'd say, and justlooked forward to teaching her all the things that my mom was teaching me, like being in the wilderness, how to play, how to learn about, you know, sexism basically,how to be a woman, but also how to love herself, and how to love her body the waythat she was. so after i was married, we decided to moveforward with having a child. and i did not end up with the baby girl that i always dreamed of, but i do have a
beautiful 5 year old son whose name is braedon and he is just the light of my life. i could go on forever about him but i won't.so, you know, after we decided to make this life-changing decision of having a kid we were like, you know, me being the planner that i am, i wanted everything planned out ahead of time. so i immediately was like, “how am i going to do this, how am i going to do that?†i needed to plan for how this or that was going to happen. and i'll talk more about what those needs were, but the biggest lesson that i got out of everything is that you can't plan for everything. i really thought that if i talked to enough people and learned about enough resources and had all the right
equipment that it was just going to be easyand there would be a solution to everything. and what i realized as i went through the first five years but in particular i would say the first two years of his life was that children are amazingly adaptable and they are so resilient. and really between that and then my creativity and my ex-husband's creativity, we ended up solving stuff on the spot with average things that were around the house and just being creative. so i would want to say really allow space for creativity to come through and really think outside of the box because a lot of things that you can't figure out how to do, you'll figure out how to do. so, you know,just keep that piece in mind. i think that
that was huge for us. and speaking about the pregnancy process, you know, it was a high-risk pregnancy. i did get some a little bit of concern from my regular obgyn. she was, you know, not real familiar with spinal cord injury pregnancy and just from the look on her face i could tell she had that little bit of (?) i'm not really sure how to handle this. so she said, "well, you're high risk so you need to go to the high risk clinic," and i was kind of handed off. i went to the high risk clinic and that's where i went for follow-up with my entire pregnancy. and the doctors there, you know, i just said right from the beginning, i don't want any prenatal testing, i don't want anyone talking to me about any of that stuff, i'm
not doing it, end of story, so if that's going to be a problem, i need a different doctor. and he said ok, no problem. and so we never really had to talk about disability as it relates to my potential child at that point. there was no discussion about that. we were just focused on my disability. and it the impact it was going to have. and it was actually really nice because i was expecting a lot of stigma and he... (music playing: "always better when we're toeth...") >> laura hall: one second. i think we're some technical difficulties with the audio. >> ... clinic so of course they see a lot of people with varying disabilities. and he was like, really on the high-risk scale you'rereally on the lower end of the high-risk
scale. but he didn't see that it was he didn'tmake it seem like it was out of the ordinary for me to be there.so then we fast forward to having a child and that's where, you know, my relationship with assistive technology came in. some of the things that we used that were really helpful, one was a drop down-side crib. now i know those are not really legal anymore. at that time that decision hadn't been made. we had gotten it on craig's list and we just made it so that the side went all the way down and was flush with the mattress so that i could then slide braedon from my lap to the crib using the blanket underneath him and it was a smooth transition and i didn't haveto lift him up.and then we could put
the side up obviously. we adapted it a little bit so that it dropped all the way down to the ground. we also used, you know, for diaper changes, you've got to lift kids up and over the edge when you don't have drop down sides. so what i learned from talking to another parent with a disability was to usea card table. so i used a card table so that i could roll underneath it and i didn'thave to i could be at the same height to transition, so sliding the baby over usinga blanket worked really well. and i did the same thing for bathing. i would fill up thelittle container thing you set the baby in, little shower chair or whatever, with thewater and i would have it on the kitchen counter where i could roll under and i would be next to the sink and then i would be
able to slide braedon out and on to a toweland wrap him up and get him in to my lap and dry off. for transporting him, when i used my manual chair that sometimes could be a little bit difficult so i would use the babycarriers and i would put him in front of me. but that didn't work for very long becauseas he grew i wasn't able to lean forward when i went up hills, which made it dangerous because i might tip over backwards. someone had suggested using there's like a strap system that you can use, similar to high chairs. but for the way ? thinking chairs someone bought one for me to try but i never actually did, thinking that might secure him on my lap in a forward-facing position instead of backward - facing, i guess, whatever way he's pressed
up against me. i never tried that but that could be an option. i also used a wagon to get him around. he loved that and would he loved that. he would fall asleep in it. found it easier than pushing a stroller because i could pull it behind me. pushing is harder for me than pulling. one of the ways i got incredibly creative, speaking of that creativity, i thought, how am i going to get him off the floor? i have zero tummy muscles. everything i can do from the floor to my lap needs to be one-handed. how am i going to pick a babyup one-handed? and we figured out that overalls you can pick up the strap in justthe right way where he's fully supported and
that way i could pick him up one-handed and put him on my lap. so any time he was going to be playing on the floor, we wouldmake sure that he had overalls on. we also did a lot of practicing ahead of time with flour, a bag of flour. you know can i pick the carrier that goes into thecar? can i pick him up? so we put overalls on over a bag of flour just to get an idea of what that weight would be like. and thatwas really helpful.i used the boppy. i don't know any parents who don't use the boppy. it comes in incredibly handy and it allowed him to stay on my lap while i was rolling around the house when he was an infant and also positioning him somewhere safe on a height that i could reach. if that makes sense.
i put strategically placed the baby gates so we had like one room that was fully child proof for when he was able to crawland move around and play and stuff. and then i would instead of just taking that hexagon or octagon or whatever it is, we would go from one doorway to the other togive him a larger space to move around. and so any time i was going to be on the couch or something where i was not in my chair where it was going to take me longer to get to him, i would have those gates left up so that he would always be relatively close within reach and if something did happen he wasn't able to run away before i could get in my chair. i think this is brilliant. i don't know if this is legal. but i was really, really
concerned about there was no way for me to physically get him in the car because i needed to go up a ramp and i was going totip over backwards so there was no way for me to get him in the car. so i was paranoidthat at some time i was going to be alone with him and there would be some medical emergency for somebody else in my family obviously if it was us we wouldjust call 911 and i would need to go and i would have no way to get him in the car.so my ex-husband and i created this thing again, practicing with flour, a pulley system, which was a line that was attached, there was a line that was attached from the width of my car basically. it was in the trunk. and then it had a string on a pulley on that moved
along that string. i don't know how to explain this. but it moved along. and that hooked the baby carrier so what i could do, and what we did, i guess i should say, put the flour in the baby carrier, taking the infant carrier without to the trunk, opened the tailgate, about same height as my lap, slid the baby carrier on to the tailgate, attached it to the string, pulled it up using, or the rope, yeah, little stronger, pulled it up, with one hand and guided it with the other hand so that it would land into the base and lock. so there was a way for me to do it. i wouldnot ever say you should be driving around with your child in your trunk. i neverhad to do it, thank god. but thinking about that and ways that i now could adaptthat so that that pulley system actually
helped me put him a seat, you know, now that i have a power chair that has a tilt function and a recline function, i would beable to get the baby carrier into the car. and so i would be able to actually legallyproperly put him where he needed to go if i moved the pulley system. so i got really creative. i was proud of that system. i'm glad i never had to use it, but that's whati mean about creativity. so there were a lot of ways that i used atthat was extremely helpful and one of the things i love is watching my son startdoing the same thing. so like he'll grab my reacher and he'll use it to get something,like, huh, i wonder how we could reach that if something fell? he's startingto use at. he's starting to think creatively
about solving problems rather than seeing a stigma around the use of at. so i think that's a great lesson that comes with having to use at. >> laura hall: okay. i think we can go to the next slide, please? so just a quick overview of some of the things that melinda used, the at that she used and explained in her interview. she mentionedthe drop-downside crib. which may not be available now. we were talking and theydo have cribs now that open from the side, sort of like a refrigerator, that maybe able to have the same effect. they are quite costly. but again there can be thingsthat can be modified with cribs. so, again, we encourage creativity.the appropriate table height for the diaper
changes and bathing was a big thing that melinda mentioned, just having everything at the height she needed so she didn't need to reach up high or reach down low and to kind of minimize the risk of falling or dropping. and that was just as simple as a card table. the wagon i think was an ingenious idea. and braedon obviously loved that. and my favorite part of the story is she used the overalls and the practicing with flour. i'm recently married myself and have been talking with my husband about having children. and neither one of us have a lot of experience with children. and i think that's because as a person with a physical disability myself, and as a person with autism in my husband, we weren't given a
of opportunities to spend time with children. i don't know if anybody else has experienced this kind of stigma, but kind of the idea that, i've got to keep a close watch on my child because what if she drops him or something like that. and i haven't found that with melinda or any of the friends that i have now that have children. but we were talking about really needing to think about ways to practice how we would do the transfers, how i could do things independently. so the flour would be a great option, and probably much better than the babies that they give to teenagers that you have to turn the key every couple hours. (laughter). so if we could go to the next slide, please?
just a few more things that melinda mentioned,the boppy. i agree. i have nieces and the boppy was amazing for feeding them and playing with them and holding them. and again it made my sisterfeel safe. she was one of those people that had a little apprehension when she had her children. the front-body baby carriers, these are definitely kind of a mainstream piece of baby technology that a lot of mothers use now. and with many of the mothers that we talk to, not just melinda, this idea of strategically-placedbaby gates came up. we looked for accessible play pens and play yards. the problem with the play pens is that they don't drop down or they don't drop down farenough. and some of the play yards
that were designed kind of like baby gatesstill had a threshold that you had to go through that you would still need to pickup the baby from the floor. so melinda's idea of just creating boundaries within a certain area that would allow her enough time to transfer from wherever she was to a chair could definitely work for parents with any type of mobilitydisability. and then the pulley system for the car carrier i think is also a really ingenious idea, and if i do have a child melinda isgoing to be helping me rig that up in my vehicle. because these baby carriers, fromwhat i understand, weigh quite a lot themselves. so you've got the child in thebaby carrier and then you're trying to
do it from a chair to some other mobility device. so using a pulley system is definitely a form of at that would help withpositioning and making sure that the baby is locked in safely.could we go to the next slide, please? these are some other at possibilities thatmelinda didn't mention. not to say she might not have used any of these. but other at possibilities that we've come up with. they now have these great video monitoring systems where you can monitor your baby from your tv or maybe another device likean ipad or iphone. for someone with a mobility disability, this would enable youto kind of see whether whatever situation is happening in the other room needed your attention right away or whether use could
just wait it out, or how fast you needed tomove, things like that. so a lot of people are excited about the video monitoring systems. i came across a swivel bath seat. and this is a seat that the baby actually sits in that you're able to turn around 360 degrees in the bathtub. so if you have problems with reach this could be helpful because you could turn the baby and wash all the different areas that you need to without actually having to reach around or turn the baby itself. and it's got a nice little toy on the front that keeps them occupied, too. some of the other at that we came up with, this is at that people would probably use if they needed help with feedings for themselves but it could also help for feeding a child. built-up feeding spoons.
the scoop dish, which is more elevated on one side in order to get the food, kind of on one end of the bowl. divided dish if maybe you get into that area where they're eating solid foods and you're trying peas or something? there's nothing worse than run-away peas! (giggling). and there are also things like hand splintsthat can actually hold the silverware right to your hand if you're not able to grip.any of those kind of feeding devices that are available for adults could certainly workfor feeding a child as well. i'm not sure if everyone is familiar withthe freedom wand? i know some of you are. the freedom wand is a device that can hold different products, but in this
situation could be used to hold maybe a baby wipe? and if somebody has problems with reach or just getting into certain areasit's a longer-handled device that could just help get those areas that are hard to reach. and it also comes with a little attachments that can be put together to reach at different angles. so the freedom wand is something that allows a lot of adults to help with their hygiene and their dignity but really could be used for a child as well. clothing without zippers or snaps or buttons may be more helpful for parents with disabilities that have problems withfine motor skills. we've also talked to parents that have said, "one of the thingsthat i did is just kept my baby in a onesie
as much as i could during the day becausethey're just so easy to get on and off." so, i mean, if snaps are not a problem andthe onesie is easy to get on, you know, that's just as well. again, it's just allof this stuff depends on your personal situation and what would be easiest for you.also baby clothes have zippers and those sleepers, which are so adorable, have zippers, so a zipper pull could also help someone with difficulty with fine motor skills to get the child in and out of the sleeper. and i think we're going to move on to the next slide. and i'm going to pass it over to aimee who is going to talk well, we're going to hear kellie's story and then aimee is going to talk about kellie's story.
>>kellie blackwell: my son was born when i was 30 years of age. and i don't mind saying now that i'm 37. so my husband and i it was apretty significant life-changing decision to decide to have a child. but it's been funever since. there were certainly been challenges. and there were some fear involved on my part in terms of how am i going do this, how am i going do that? and i quickly found out, just as some others have mentioned, there's no manual (laughing) that you get, no matter who you are or what your challenges and abilities are to raisinga child. you just kind of learn as you go. but there were definitely some things thati purchased and/or people bought for me before my son ethan was born. and actually when he was born, my first
concern was diapering. you know, with my vision impairment, i just thought, oh my goodness, how am i going to change diaper? and i found out there wasn't any assistive technology involved, but i just a lot of wipes and went through a lot of diapers and i thought, hey, that's okay. in terms of his changing table and dressing him or, you know, different changes and dressing him for the day i just became extremely organized. i had different organizational tools, different totes and things that i kept in very specific places that included different things like maybe diaper cream or q-tips or fingernail clippers whatever it might be, everything i had right in reach in organizational-type totes/devices. and that was one thing that i
used. and then organizing his dresser even in a way i created a system for making sure that, you know, the 3 to 6 months clothes were in a particular drawer and the 6 to 9 in another and so forth. that wasn't necessarily any at, but just keeping really organized with dressing and diapering and things like that. in terms of traveling, i used public transportation.so it was important to me when getting new baby things that i found an infant carrier that did not require the use of a base. and i'm sure everyone has seen the infant carriers now, a lot of them have the base that you can lock a car seat into. i knew that taking public transportation, it would not be convenient to carry that base and i was able to find a car carrier that didn't require a base. and then also there was a whole travel system.
so i looked for a stroller that came with the car seat - the car seat was able to lock into the stroller. so that was easier for me, getting the stroller out and just getting the car carrier and setting that in and having that lock into place so i didn't have to worry about getting him in and out of the car carrier and into the stroller and needing to find a spot for the car carrier. so that worked out really well. when feeding (chuckling) became an issue in terms of, you know, baby food and more solid foods, that was an interestingfeat. and it created a lot of messes, but, again, that's all right. quickly found outthat he knew very early on, you know, my limitations in sight and was quite helpfulin feeding. i used a bumbo seat it's called, to have him sit in. of course obviously supervised. and i didn't need a tray for the
initial feedings, baby food jar feeding andwhatnot. but he, like i said, assisted in the feeding process. so i ended up with enough. one of the things that i found extremely helpful was a curved bib, a bib with a pocket the bottom of it. so it was able to cover most of him and then catch the food that fell so that was helpful for me. and then one of the things that i just thought of now actually, after feeding we usually needed to bathe. and bathing with the infant bath was not an issue. i just made sure, again, organization. i had everything out on the counter that i needed before bath time. but when he was old enough to sit in the tub, i found a neat device and i don't even know the name of it, i actually found it at a garage sale that hooked to the side of the tub that had a foam top
that was plastic by it was covered in foam, so i could either sit on that piece or just hooked to the side of the tub. and then there was as seat that went down into the tub that allowed him to sit upright and in on spot in the bathtub so that i didn't have to worry about him slipping around or getting away from me while in the bath. so that was probably one of my most fun finds from a garage sale that i found as a young mom. so thatwas extremely helpful. another thing, when he started walking i thought, "oh, my goodness, how am i going to, you know, find him and this that and the other?" and, you know, someone had recommended, another person with a vision impairment who also has young kids, they said, you know, bells on the shoes and i thought that was ingenious, soi made sure that when he started walking
we had him wear shoes with bells on them and then i could hear where he was going. it was great. and baby gates were key. in the house that we were living in at the time, it allowed to have a pretty closed-off area and i didn't have to be concerned about him getting into things that he shouldn't be.and then also for a short time i used a backpack that they actually sold at one of our local department stores that had a restraint on it or kind of like a lease and i would have it hooked to me and then he wore the backpack so that it created a way for me to not lose him when we were out atstores or in parking lots or just even going for walks. he learned fairly quicklyto stay with me so we didn't use that for very long, but that was helpful as well.so, yeah, it's just been been a learning process,
that's for sure. i was sharing a story recently which is kind of funny in thinking about what you would do in the case of an emergency, and fortunately mine has a funny ending, but when my son was about 19 months old he was waking up from a nap and i went in to get him and noticed that his leg was wedged between the crib slats. and i thought, "oh, my goodness, how am i going to get his leg unstuck?" because it was all the way up to his thigh and i couldn't tell, you know, which way to turn it to get it unstuck and then he started crying and i just thought, "oh my goodness." but i had just talked with my husband on the phone and so i knew that he was on his way home but didn't know how long he would be and as luck would have it i called him back and he didn't respond. so i thought, "my goodness, i can't just leave my son in the crib." i didn't know if it was cutting off his circulation or what was going on.
so i called the non-emergency number and talked with a 911dispatcher and she had asked if i wanted to have an ambulance, and i said, "my goodness, no, thank you." and so she said, "okay, we'll have somebody out right away," and then between that time my husband had got home and we freed ethan from the crib and all was well. and shortly thereafter, within a minute or so, not very long, here comes the fire truck up to my house. and three rather large firefighters get out of the truck and come racing to the door. and we kind of chuckled about it because they were gracious enough in asking me questions, you know, how can we assist, and this, that, . and the other, but i'm not sure that they even had experience with children themselves i think the biggest thing to think of for any parent, but especially parents with disabilities, is just to get really
creative in ways to figure out how to do everyday kinds of tasks. and that's what i've got, (laughing). >> aimee sterk: next slide, please? we should just go over some of the at that kellie used. this is aimee, by way , sorry. so kellie talks about using shoes with bells for her son after he started walking so she could locate him in the house. and then the backpack tether i see a lot of kids especially in zoos and stuff, try and keep him nearby and have boundaries for him so he would not get too far away from her. and i thought her points on organizational tools were really good, too. to have a place for all of the items she used for her son so that she could locate them again. to put certain clothes in certain drawers so that she knew where they were, put the whites in a certain place to be able to locate them again.
and another device that a lot of people findhelpful is that curved-bottom bib. it really catches all the food that doesn't make it into the baby's mouth. so that would be good with a mobility disability or like kellie, with a vision disability. next slide, please? couple of other things. a carrier without a base for public transit. so one that she could use and secure and not need to have two pieces for it. and then a stroller/carrier combination so that whenshe got where she was going with her son in public transportation she could push him. and then that bumbo seat for feeding. actually melinda is in the room with us here with us and she said she used that as well. it gives a really stable raised
space for your child to sit and securely for feeding but it's not a high chair. and then some other things that we came up with that might be helpful for people who are blind or have low vision are the penfriend. the penfriend is one of our higher-tech devices that we have availablefor demonstration with our local sites. it uses rfid technology. you can place sticker labels onto items and then set up a recording where you can what that item is. you can place little sticker labels on the different jars of baby food and then record which jarso you would know, especially if your child doesn't like strained peas, you wouldknow which one was (chuckling) bananas instead but you could also label other things that you wanted to find, even bins,
what's in your different bins and things likethat. also great are bump dots, and these are tactile stickers that you can place on even like their bottle-warming devices andif you needed to know where the start button was you could place a bump dot on that so you could be able to locate that and get your bottle warmer going. people put them on their microwave since those are now flat now and i know a lot of people microwave bottles to get them warm so >> laura hall: just anything that needs identification. you don't need as high-tech at as the penfriend. you know, maybe two bump dots for the three-to-six month clothes and three bump dots for thesix-to-nine month, depending on what
system you wanted to work out with your drawers. >> aimee sterk: yeah. and another thought of was a talking thermometer. i know that a lot of times when you're calling the physician's office or pediatrician's office after hours they want to know the exact temperature your child has and they determine a lot by that. so having a talking thermometer to be able to take your baby's temperature and know where it's at. and then children's audiobooks. there are lots and lots of books for kids that are available on audio. i have an audible app and there's tons of great books. and then you have a subscription? >> laura hall: yeah, this is laura again. i recently became eligible for the braille and talking book library. they havea mobile app called bars that allows
you to download audio books for free. and you can either use their equipment or use, like i have a didn't smartphone and a tablet so i really need their player, but they have all sorts of books on there and that includes children's books. and some of these things that had come up. the people that we interviewed,said, oh, yeah, i did use that. so kellie did mention that she did use both audio and tactile books, which is next on our list, to be able to share story time with her son, >> aimee sterk: and i think kellie mentioned recording, but there are also of helping with homework, there are tactile/braille/large print, and other kinds of math tools. so that as your child ages and you're helping with homework, the tactile tools to help you figure out math concepts and figure out math problems with your child.
>> laura hall: kellie was mentioning it was getting harder and harder for herto help her son with homework. so this is kind of where we get into the at for children who are older. even though her son isn't real old yet. a lot of these tactile tools that are available, and we have a link on your resource guide, enable the parents to be more involved in what the child is doing and understand the problems better. >> laura hall: okay. this is laura again and we're going to play deb's story. and deb is a person with hearing loss. >> my name is deb and i'm a parent of two adult children. i am a woman who has a couple different abilities i guess disabilities but i like to say different abilities. i'm a late deafened individual. i started losing my hearing loss noticeably in high school, and probably as a result of that and some other things i experience depression and
anxiety and i'm recovering from trauma.so, i'm a master's level social worker. i serve individuals with disabilities through the community mental health services at this time. i'm also an advocate and a disability planner. i like to think of myself as an equal opportunity disability supporter in that respect. i became a parent when i was 29, i had my daughter. at that point i already wore hearing aids. i could hear some without my hearing aids but not very much. and that was in '92. so there wasn't a whole lot of technology like cell phones were attached to cars. they weren't something you wore in your pocket. computers weren't really a big thing yet. they were just starting to become a thing. and so a lot of the technology that we use today is based on those two pieces of technology so there weren't a lot of options for me. one of the things that i did use was they had the baby monitors that had the lights and you could tell by how much light
lit up how loud it was. so i could tell by the way the lights lit up if she was just breathing or if she was talking or if she was crying because it was all lit up. so i could go to her. and i didn't use a lot of technology. i usedmy animals, honestly. my animals, even my cats react to sound. so i responded to that. andvibrations. i would have loved to have been able to use like the video monitoringthat we have today. even though the phone-based video monitoring or they havesome technology that responds to vibration and you'll have the strobe lighting.all of those things would probably have reduced all my anxiety. my kids had to talk very, very clearâ so that's a benefit and a curse for them, i supposeâ because otherwise i couldn't understand baby talk.
so for me, most of the stuffâ i didn't reallyhave at to accomplish a lot of what i would think of as childcare tasks. we justsort of muddled through. and i think that my kids accommodated me out of necessity, not necessarily out of any other reason. and i think in some ways it made it more harder for them. if i could have used technology along the way they wouldn't have had to accommodate meâ because kids aren't supposed to necessarily accommodate their parentsâ i would have been able to respond to their needs without them working so hard to get to me...so... no regrets. my kids are great. they're realresponsible adults. but definitely can see where like the video monitoring and text messaging is a good way to
communicate for me much better than audio like the phone. skype technologies. and my friends have a video well, they usedit for their horse, but i can see using it for your child that went right to their cellphone, to their smart phone. video monitoring at the doors, windows. if you think about those times where you're talking about people coming in and kidnapping a child in the middle ofthe night in other parts of the county and i can remember wondering, would i even know? how would i even have a sense that was happening, unless i felt the vibration and it woke me up, youknow? so... >> laura hall: okay. next slide, please? slide 14? so just kind of a review some of the thingsthat deb used. deb's children are
older now. so as she said, there wasn't alot of assistive technology available at the time. however, she did use hearing aids, which she continues to use. and the baby monitor with the visual light indicator sothe light got brighter as the sound got louder. now there are baby monitors that can vibrate or have strobe lights and can be connected to some other device for hearing loss that we'll talk about a little bit more in a minute. but great use of at at thetime. i loved what she said about using her petsas alerting devices. it's so true that, you know, our pets do react so sounds andthings that they hear and so it was great that that worked for her in a way.one of the things that deb didn't mention
in her interview but then called me back and said, oh, i forgot this, is closed captioning. she said that, "my tv was never without closed captioning, and so as a result of that i think that my children became very good readers." and she also mentioned because of her hearing loss her children also had to speak very clearlyso they learned how to talk and communicate earlier and in a clearer way inorder to accommodate her disabilities. now that they're older, she talked about using text-based communication with them and skype. and of course there'sapps of all types to do that. so that's a great use of at. i was a little confused what she meant by the horse in the interview when we first did it, and she explained to me that one ofher neighbors had a horse who was going
to have a baby, a foal, and they were usingthe video monitor to see to watch and see when she was going to go into labor. now it makes sense. but, again, using the video monitor, likewe mentioned with mobility disabilities, could also be helpful for someone with a hearing loss. because you could actually see what's going on and determine how immediately you need to address whatever situation. can we go to the next slide, please? slide 15? so some other at possibilities for hearing loss are the visual alerting baby monitors. again, either the ones that willactually show you what's going on in the room or have some sort of vibration. a lotof these have clips that you can clip them
to your belt loop or any other place to keepthem on you. personal amplifiers. so perhaps, you know, if the technology wereavailable at the time, deb and her children could have communicated with personal amplifiers which would have amplified their voices for her. i do knowthat that's something she uses now in her work setting. the sonic boom alarm clock? i think some of you are aware of this. this is a very, very loud alarm clock meant for people with hearing loss. it comes with a bed shaker that actually makes the bed vibrate as well. and one of the options available with the sonic boom alarm clockis something called the sidekick, and that allows you to plug in the bed shaker to another device. and this actually could
interface with something like a baby monitor so that if the baby monitor made noise it would shake the bed. and kathryn made the comment, "depending on the level of hearing loss, which is very different." yeah, that's true. there are sound monitors and alerting systems that may flash the lights if there's movement. you know, deb talked about that fear of, you know, what if somebody were able to get into the house and into the baby's bedroom? if something could have alerted her either by light or vibration.that technology is available now. and on your resource list we have a whole webinar where we did alerting devices, that can give you much more information on that type of assistive technology. and lastly, amplified phones. as deb said,text-based communication and skype
work really well for her. but amplified phones are available for people with hearing loss. and, again, this is another thing thatdepends on the level of hearing loss, but it may allow a parent with hearing loss tocommunicate with their child over the phone. okay, if we could, go to the next slide? and aimee is going to take over with liz'sstory. >> aimee sterk: okay, well first we'll playyou liz's story. >> hi. my name is elizabeth warren and i am a mother, a single mother, who has depression. and i'm going to talk to you alittle bit about different kinds of technology that have helped me to manage parenting with depression.
so i think, you know, the most important thing with depression is to have a good support system. i guess i probably would say it kind of is divided into three categories. one is treatment, one is support system, and one is self-care. and for treatment, i didn't have all the technologywe have now when my daughter was young. but now they have reminders for when to take meds, and i had to set up an elaborate telephone call system for people,for them to remind me if i was having a hard time remembering. that was just periodic. as far as the support system, i am so fortunate to have a really wide support system. and people were willing to plug in, in different ways, to help me out. of course i've had to work to foster all of these relationships, but what i eventually did
was i shared with my closest group of friends my wrap plan, wellness recovery action plan, so that they would be able to get ideas so when i was having symptoms of depression and might need more help and when i was doing well. and also the wrap plan and my medical exam directives both have places for me to talk about this if for some reason psychiatrically i'munable to make decisions. it allows me to list someone else to do it for me. and some of my wishes in regards to treatment. and also i was able to put in my wrap planwho would be responsible for taking care of my daughter. and i had of course talked to that person ahead of time and given them a list of people they could callon to help with that.
thankfully we didn't have to i think we onlyhad to resort to the wrap plan once when my daughter was young. those are both online tools right now, the wrap plan and also the advanced directive. andi continue to update my wrap plan on a regular basis and share it with my supportsystem. and i do that with an online tool. the other thing for a support system is scheduling, time with other people. and scheduling could get really complicated sometimes because if i was kind of slipping, i might need help with household projectsor, you know, house cleaning or sometimes even having someone sit down with me to make a list of groceries or deciding what it was i had to do next. thatis not always evident when you're depressed.
so i had a support system and i actually have used one of the online tools so that people can go to one of the calendars andi can list for things that i need help with and they can sign up. and anybody else who may want to sign up can see where spots are already taken and where there are open spots. so i've been able to coordinate childcare, get rides to and fromlike treatments or appointments. i still get ect so i have to have a ride there andhome because of the anesthetic. and a lot for, you know, helping with childcare.also i found that i needed to schedule my self-care time. because just as a single parent you won't find self-care time unless you make it and are very deliberate about that. so there were a number of people in my life
who really wanted to have involvement one-on-one with a child. i had a botanist friend who once every other week would take melinda out for walks andhelp her identify plants and that kind of thing. i had another friend who was reallyinto cooking and they cooked dinner together once a week. and that allowed metime to take care of myself, which then helped me be well, most of the time, and bea better parent. and some of the things i do for self-carethat involve other kinds of assistive technology are, include, i use a lightbox because my depression does have a seasonal component and when there's less sunlight it can get worse. and so just having the time to sit in front of the lightbox. a lotof times i would kind of do double duty there
and also maybe listen to a relaxation tapeor self-help tapes cds now while i was sitting in front of the lightbox. i also one way to take care of myself is i have a daily meditation practice. and while i can mostly do that when my daughter is asleep, i also can go to perhaps a workshop or a class if i plan ahead of timeto have someone help with her. i also use art as a form of healing, a lot.so i anything as simple from when i'm not feeling too inspired to create myselfi can just color in a coloring book. or i do a lot of paper crafts? and as far as equipment for paper crafts this is a separate disability, but i have very bad arthritisin the joints of my thumbs. so i've been able to get special scissors and craft knives,x-acto knives, that use your fingers rather
than having to grip them really hard and putstress on that joint. so that's been helpful in my self-care. i think with mental health there are probably just about as many varieties and ways of technology as there are people. but for me a lot of it has had to do with planning ahead, scheduling, and making sure that support systems are in place when things are going well, for self-care.and if things start to deteriorate, that there's a way for people to step in and know exactly what it is they can do to help me or my daughter. so that's about it. thanks. >> aimee sterk: all rightâ oh, next slidejust popped up. okay, so that was liz talking about at issues for a mental health disability. and
she mentioned the wrap plan online. there's actually also an app for wrap plans and i'm a person mental health as well and i have my wrap plan right on my phone. it's a great resource or way for if you're starting to notice increased symptoms that you can go to that and take a look at things - lists of things that you've previously created to kind of help yourself. "when things are this bad, try these things." i know that i'm doing really, really bad when i want to throw my wrap plan in the fireplace. so the idea is to have a wrap plan and to start using thatwellness recovery action plan when you're first noticing an increase in symptoms and try the things that you've listed that have been helpful in the past.liz also mentioned alarms and scheduling, and that's another great at that you can use on your smartphone, and reminders to take your medications,
reminders to check in with people, especially if you're a person who kind of withdraws when you're experiencing more symptoms and you can to do a reminder for self-care or do a reminder to check in with someone you trust and let them know how you're doing. reminders are great when you're not doing well for appointments and things like that, too. and then liz mentioned and also in our resource handout there are advanced directives that include issues of childcare.so if your symptoms are very strong you can pre-indicate who you want to care foryour child if you are not doing well enough. or if you need to be hospitalized,who can take over that care of your child, who your child already knows and trusts and who you trust with your child.
and then liz mentioned some other self-care tools that she uses, including adult coloring books, and then crafting tools thatare adapted so they don't hurt her arthritis in her thumb. i find adult coloring books especially calming. because like she said, when you don't have the energy to create somethingbrand new, especially the simpler adult coloring i don't like the really detailedones because those stress me out (chuckling) but those simpler adult coloring books you can just fill in something that's already started and you don't have to be creative from the beginning. >> laura hall: if i could just interject fora minute this is laura i actually found this out on the web, that you can findcoloring book pages for free just by doing a search. i was actually looking forthis picture of an adult coloring book and
a bunch of coloring book pages came up. so, you know, someone may not have the resources to invest in an adult coloring book, which can be quite expensive, so they're certainly available for free on theweb as well. just wanted to mention that. >> aimee sterk: yeah, i do searches for the mandala ones and print those out. other assistive technology are medication reminder systems. and i find this for myself, too. i have multiple medications that i take. and having a system where i sort all my meds for the week out and theni can take them physically out of those boxes and then i think, "oh, did i take mywellbutrin today?" i can look and that box is empty so chances are pretty good i took it. there are lots of different kinds of medication reminder systems. some of them
are super high tech and some of them are just, you know, the cheap $3 from your local pharmacy. i think, too, people withkids, my friend melinda talked to me about the ones that are child safe so you have topull and push to get the box open. so that's a good idea, to have medication reminder systems that your kids can't get into. and also like melinda -melinda is in the room with us (chuckling) instead of using like you can get them week by weekâ my pills for the week don't fit in one so i use it during the day. or actually now i've got asuper extra-large system to fit. because i have fish oils and, you know, those are bigpills so you can get super large ones that are also child-proof. >> laura hall: there's also a system now that some pharmacies are doing commercially and one is called
pillpack where they will actually put your pills in blister packs for the day and it may be, you know, 30 blister packs for a month or a week or however you want to set that up. and like i said, there are online resources for that. and then we've also seen that some pharmacies, but not all, are doing that free of charge. but it depends on the pharmacy. so i wanted to mention that. >> aimee sterk: so the blister packs and the child-proof one's too, and the nice thing about them is they tend to not openup in your purse. >> laura hall: i can't get them open. >> aimee sterk: haha, okay, so it depends on your disability. and then liz also mentioned and i think all of us use this here, too, the lightbox. and there's really good research that you don't have to just use the
lightbox during the winter, that it can help with depression year round. i have mine right on my desk here so i can do it in the morning when i'mworking. and kathryn, maybe you can send this out to everyone, but kathryn shared with the staff this little quiz which will tell you the best time of day and for how long to sit n front of your lightbox. i found it really helpful until it told me 3:45 a.m. (laughing) i'm a morning person but not that much. but it did reinforce for me that i should sit in front of it very first thing in the morning. and then liz mentioned and i think we have some good resources on this – there’s apps for meditation and relaxation.i think laura and i both use an app called noisli that provides white noise. i had actually bought one of those white noise machines for my bedroom to help me calm down when i sleep. and those are now becoming more affordable and you can find them online.
actually on this slide there's a picture of me with my weighted blanket. for some peopleâ not everyone, but for some peoplewith anxiety, deep pressure over your entire body can be very calming. i have another friend with anxiety that under weighted blankets she feels trapped and it really raises her anxiety. but for me, especially after my miscarriages, being under a weighted blanket i found to be very calming. so it depends on the person, but weighted blankets may help with with self-care and anxiety reduction for people with mental health disabilities to care for themselves while taking care of children. there are also apps that you can use so if you are needing assistance you can just push a button and it will send a message to a designated person if you're in
trouble. so that can be a person that youtrust, who knows you and your children or your child, and can help you in making orcall 911 if that's what you needâ but can help make sure that you are your child aresafe. >> laura hall: this is laura. one of the apps that i have the logo for the picture here is one-click sos. and i noticethis app will also give your location to the person that you text or 911 if you wereto choose that option as well. >> aimee sterk: and then finally on this slide is sensory items that provide comfort. a lot of people find that there are fidget items, or even things that reduce sensory input like head phones and things, that help them calm their anxiety and sensory input like head phones and things, that help them calm
their anxiety and provide comfort.next slide, please? >> laura hall: okay, this is laura again and i'm going to talk about some at possibilities for neurodiversity. as i saidin the beginning, neurodiversity is sort of a broad term that came out of the autism community, just describing any way of processing information differently, takingin information differently, and any challenges that you may have with that.some of the at possibilities for neurodiversity thought of, again, reminders and alarms. that could be good for a person with a disability or even a sleep-deprived parent for sure. you know,there are apps for that, there are actual devices for alarming and reminders if forsome reason someone doesn't have a
phone or doesn't want to have something on their phone. there are dedicated devices for, reminders and alarms. >> aimee sterk: and i would say, too, when we sent out your resources, i had reviewed a whole bunch of apps for like feeding and changing your baby. i tried a bunch and i hated them all. but just after we sent out your resource list my friend told me about one called feedbaby that i think kathryn sent a link for it. but is has the most steam-lined of any device i could find track feeds, diaper changes, sleeping, if you're pumping, you pumping can track um, breast milk, and then you can also track medicine, growth, and vaccines. and then there are also settings for alarms. sotwo hours after ever feeding or two hours after every diaper change if you wanta reminder to like check the baby's diaper or see if they're hungry again or toon them while they're sleeping.
so there are dozens of apps for tracking. that's the one that i found that seems the most easy to use. laura hall: kathryn, it was feedbaby. aimee sterk: all one word squished together, feedbaby. laura hall: kathryn also made the point that included in our neurodiversity is also mental health. and we recognize that. we have provided liz's specific story which talks a little bit more specifically to mental health which is why we separated the stories, but kathryn is absolutely right that mental health is included in neurodiversity just to avoid anyconfusion. so other at possibilities for neurodiversitywould be any kind of step-by-step devices. i know some of you have our kitsand may have the talking photo album,
which we love as a step-by-step instructional item. performing some sort of childcare tasks maybe and being able to see pictures of that along with audio. again, ipads and iphones or any type of tablet or other phone are great for recording videos and helping people learn how to do certain caregiving tasks. because as every one of our parents has said, you know, children don't come with a manual. and people don't necessarily know how to do some of these childcare tasks, especially given the stigma and the attitudes that people with disabilities aren't parents or can't be parents or shouldn't be parents. and so in a way it's sort of like there's this expectation that people will learn how to do these childcare tasks in a vacuum. and
i know there are things that i don't know how to do that i'm going to need to learn how to do. and one of the great things that aimee found was this dvd for childcare tasks from birth to three months. and it was a dvd that has stories from both parents and experts like medical professionals that actually walk you through step-by-step some of the childcare tasks that will be required for taking care of the child. and i was thinking, "i'm totally going to buy that if i can find it." because i think anybody could use that. and you've got people as parents telling you how things really are and then you've got medical professionals and experts telling you maybe some best practices. so i thought that was a really great find.
one of the other things that we reached out to the community of parents with disabilities and asked, you know, what kind of things do you use to help you remember, you know feeding, or if you're breastfeeding you need to remember which breast you used last, are there any kind of apps that you use? and other than the feedbaby app we didn't come up with much, but one person said they used a bracelet and it was as simple as just turning the bracelet every time they breastfed. >> aimee sterk: changed hands. they kept it on the arm of the breast they fed out of last and moved it to the next side after feeding. >> laura hall: easy, low-tech reminder. i think that's great. if we could go to the next slide?
>> aimee sterk: actually i was going to say, too, all of the research that we found, too, for neurodiversity for parents with learning disabilities and parents with intellectual disabilities, like your iq has nothing to do with your ability to parent. what they really found is that people need support. and like laura said, we aren't born knowing how to care for babies. so for people with learning disabilities and people with intellectual disabilities, they might be more trying to learn some tasks and the videos and things might be more helpful than written down, like how to change a diaper and things like that. but a parent's capacity for parenting is not at all based on how well an individual learns or how high their iq is. it's really the connection to their baby and the desire to be a
good parent and then the supports to be a good parent that are really important. >> laura hall: thanks for that. carolyn had an idea. "i've used a safety pin on my bra, too." great idea, carolyn. >>aimee: i've heard that too, except i think i'd poke myself (laughing) i have bracelets that are less dangerous! >>laura: and i think we're going to switch back to kathryn oh, sorry, yeah. >> aimee sterk: yeah, and then kathryn. so for the plan, really and i think that's part of what i was talking about, too, like parents with disabilities all parents really need supports but parents with disabilities, i think because of stigma, and things like that, might need extra support and communities surrounding them that supports them being parents instead of judges and stigmatizing them.
options for when, if, or if you do already have children, check out resources in your community. now the 211 number is statewide to find out what parenting resources there are and make sure they're welcoming of people with disabilities and see if you can tap into those resources. and like liz said, and others, find that group of people that support you, people that can help you be a successful parent. find a medical team that works with you and accommodates your needs. and i've found this especially true lately. you need people that aren't judging your disability and you as a person and your ability to parent, in your medical team. so if it's possible to find pediatricians/obgyns before you have children and really make sure that they're
people that you want in your life and want in your child's life, do that. i had a really crummy experience with an ob before because i didn't plan when i was getting pregnant and i had a lot of judgment about my disabilities and being a parent. so it is good to locate those resources beforehand if possible. and tap into the advocacy system if needed. and people with disabilities have a right to have children. if people are not supportive of that or people are, i don't know, there's forced sterilization, there’s all different realms of this whole conversation, but michigan protection and advocacy services, if you're at risk of losing your child because of your disability or some judgment of your disability, or if you need help because you're divorced and you're at risk of losing
your child in a divorce situation, find advocates that will work with you. and then check into in-home support, parenting groups, and more ideas on at. and then i think melinda yeah, lotsahelpinghands. (did we put that on the slide..) that is a great site to use to gather your community around you. and we do have maybe that's on our resource list, too. i think that's where it is. so definitely check into the resources that we have in our resource list. >> laura hall: kathryn mentioned that "through the looking glass" is also a great resource. and we've actually had they have an online parenting work group in some of these resources that we gave you. we've also had requests since we've advertised this webinar, to people wanting to know if we were going to start a
parenting support group. if there's interest in that, we can definitely help facilitate and make that happen. there is not one locally that i'm aware of, but if you are aware of one that would be great if you'd let us know. otherwise if you're interested in something like that, also let us know. >> aimee sterk: and we're going to turn it back over to kathryn for the final slides. >> kathryn wyeth: hi, this is kathryn again, and i just wanted to say that as we started looking at this topic and did research for it, well, first of all, it's not a topic you want to go on the web and be very careful about the search terms you use because it could be quite disturbing. that was something that i think all of us ran
into i think at different points. but we do want to give a shout-out to something that's on your resource list. it's a guide from our fellow at program in the state of idaho. they did a wonderful booklet on assistive technology for parents with disabilities. it's a little bit dated now but it was the resource that everyone kept pointing to if you looked for at for parents with disabilities. so definitely take a look at the resource list. we did a lot of thinking about what went on there and tried to make it as organized as we could. and i'm sure that we don't have everything. one of the common threads was that because people were... didn't know who to ask or would run into discrimination and stigma, frankly, if they reached out for help, there was a lot of as laura just said a lot of sharing between parents who had
disabilities. and that's where they discovered at and strategies. so, yeah, if you're really interested in this topic, see where you can start a support group in your local area. it would be wonderful. so considerations. these are general considerations for assistive technology. and although we had lots of great stories here, just a reminder that every person is unique and it's always important to match the person and the technology together so and even when you do that, no one product will work in all situations. so it's not like, "oh, we've got this now so you're all set." there might be additional different situations that require different at. and as we said, sometimes the do-it-yourself is the only solution, particularly in this case for parenting where a lot of products just haven't been
been developed. you might need to create something. what works today might not work tomorrow. and often it's not a product but it's a strategy or a service. so once again, you know, making sure that there are the resources out there that will help people be successful parents. next slide? many of you are familiar with the michigan assistive technology program and our resources. we had a link to our web page, which is www.mymdrc.org, and if you look at assistive tech we have our resources listed under there. we provide device demonstrations which gives you a chance for a one-to-one demonstration with somebody who is familiar with the product. you can kind of get some hands-on with it
it for a little while and determine if it would work for you. in several sites around the state we're starting to roll out the short-term loan of devices. if you have a device demonstration and you'd really like to take that home to see if it's going to work for a while, we have some of our devices available for that type of short-term loan to help you make a decision. people are using the atxchange.org which is kind of a craig's list type resource for used assistive technology. and people can put things you're looking for on there, too. you can put want ads. we work with upc michigan to offer the assistive technology loan fund which if you qualify you can get a loan to purchase assistive technology. it can also be a great way to build up your credit, by buying something small and then paying it off. online we
also have an at funding strategy which has a lot of great resources for getting some assistive technology funded. also on our web page is the assistive technology directory for different vendor services related to assistive technology. you can look up based on your zip code to you can look up based on your zip code to try to find something close to you. we do this for michigan resources because there's a lot of national resources for other things. we also provide some training sessions and we've mentioned several times some of our archived webinars. there's a wealth of information in those archived in those archived webinars. even if you don't have the time to look through or listen to the webinar, it might be worth going to the page and taking a look at the resource handouts. and then we also provide a blog that we post to quite often, a couple times a week. we have some of our blog
articles are linked on your resource page. we have a twitter account that's fairly active. and we post assistive technology information to mdrc's facebook page. so places you can learn more. next page. so as we were going through that i kept thinking that, you know, yes, there's some additional, additional stuff that goes along with having a disability and being a parent. but as we mentioned before everyone wants that manual that doesn't exist. so i just put a final thought, as just keeping it real, that "having children is like living in a frat house. nobody sleeps, everything's broken, and there's a lot of throwing up." so no matter how well you plan, you know, sometimes families and children and everything gets a little chaotic at times. so we have a lot in common with that.
if there's any questions we'd love to hear from you, or comments. please use the
chat room. i hope this has been informative. we know there's a lot more out there and i hope you'll explore the resource list. >> aimee sterk: thanks, everyone, for joining us. have a good day. >> kathryn wyeth: thank you, everyone. thank you to kate, our captioner. and thank you to my co-presenters. >> laura hall: thanks, everyone. have a good day.
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