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Parent Panel: Advice & Lessons Learned from Parents of Children with VI

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Panel Members: Jenna Kaufman & Ashlyn Lincoln on Date: 1/23/2024 TN VIVA 2023-2024 Session Description: Join us to have a conversation with two parents of children/teens with visual impairments. Discussion will include maintaining high expectations, engaging with school teams, safety and community engagement/inclusion.

Show Transcript

all right good evening everybody this is a special late-night edition of Tennessee Viva the visual impairments Virtual Academy we're really excited that tonight we've got to parents of students with visual impairments who are going to share a little bit from their personal experiences and what their journey to supporting their students in what their education in other other matters looks like today and hopefully make this a valuable opportunity for parents out their teachers TV eyes to color stand with a parent's perspective is from their side of you know what life looks like for for their kids and so we're really excited to have Ashland Alec and Jenna I hear I'm Ashland I will wait let me just back up and I'll just we'll just kick ourselves off Jenna will you guys just introduce yourselves briefly maybe just generally what part of the state you guys live in and a little bit about introductions to your children and what their visual experiences are eye conditions. Kind of stuff and then we'll Dive In more specifics. My name is Ashlyn Lincoln I have two boys so my oldest is 12 and my youngest is now I'm Gunner my youngest is the one that is visually impaired he was diagnosed at 4 months old with Leber's congenital amaurosis so are I call it the best of both worlds we have one sided Son and one of the a sign so we kind of get the best of both their lives and the fun that comes with it so gutter is in the fourth grade right now and he goes to the Tennessee School for the Blind we love seeing him run around him I have two children as well my daughter Denver is 12 and my son Beckett is 7 Denver is mai tai has visual impairment she was probably 2 to 3 when she was diagnosed with moebius syndrome which is a condition that affects the 6th and 7th facial cranial nerves do that impact how her eyes move and how she do this while she attends a derotation school sorry about Greg Hill Elementary School and she is in a special education classroom and she does receive Vision Services do that public school awesome so you know one of the things that is so I guess you know I I can't speak personally but what I can certainly imagine and hopefully it this resonates with you guys I would imagine for families that kind of early the early stages of that of suspecting visual impairments or none of that uncertainty of what's going on it's probably one of those challenging really challenging moments in in your house is all kicks off right I wonder if you could speak a little bit to how everything began for you guys was it hey we were just kind of with are you do with her children something didn't feel right or you or did you know right off the bat or have you been told at Birth could you tell us a little bit about how you you know came to realize you know visual impairment and you know maybe how how did you guys take that as a family yeah well we noticed Gunner had nystagmus when he was when he was born and that is too weak PC Primary Care appointment we brought it up the doctor said it was nothing to worry about that his eyes are still developing but I was at mom you know I just had a baby and I want to make sure my baby is healthy and so he sent us to specialist just to ease my mind the first specialist was like this is more than you know my experience that has something to do with the right now and we're going to forward you to another specialist so not a specialist we did an e r g I would have blood work and Akon of all happened in a blur it was just one appointment after another it was you know waiting for news or what's going to happen next so at 4 months old officially is when we got gutters diagnosis and we learned he was most likely born blind Leber's congenital amaurosis kids that usually are blind from birds so that was a hard pill to swallow we were in shock for a while even though the doctor I was totally out of it she just wrote down the name of his diagnosis on her business card and hate it it's me and I was I was holding gun or the moment you know I was like what's life can be like now so that was a real hard at our moment at four months old so we were at we had a toddler we had a nice run around so it was just a outer body experience I would say yeah thanks Dennis maybe something similar or something a little different we had so many different diagnosis from birth like it when she was born they thought that she had like a Bell's Palsy like so she didn't get her Mobis diagnosis so she was too and while we knew that that affected her eyes we didn't really know how much and all at that time I really knew is that like a kind of affected how she moved her eyes and she did have glasses like ever since she was too and that helped me she is seeing she does see I'm in those are her vision is corrected with her glasses but it's the way her eyes Mills and how like how she was able to use her eyes together so is more of how she's affected so it's a little bit different so we didn't actually really realize that it wasn't a visual impairment we didn't really know what that was until she was in second grade and her teacher her special education teacher that she had her husband is actually a visually impaired teacher at the school that she went to and she said you know I like I just been noticing some of these things and was thinking you what do you think about him just taking a look at her kind of doing the screening and observation seeing you know what we can kind of what we can do to help her if it's nothing then no deal you're nothing lost but we did that and so mine is a little bit more like Progressive I guess if that's the word I'm looking for where is like it wasn't like oh my gosh it's all at once you know we kind of like new and we found out a little bit more if I'm not a little bit more even still to this day it's 12 and they're like well I'm not really sure if it's moebius or if it's something else you know we just got from genetic testing back so hers has been kind of like unfolding like as we go but in that time it was for me kind of a I'm also a special education teachers kind of changes my view of it as well as I was like oh well that makes so much sense like what can we do to help her now like where can we go forward from here and I still again to this day she's in sixth grade I have to stop and think you know she sees things different than we do like she we might be walking to my why are you taking so long to let you know come up follow up with us their email catch up with her vision isn't as great a normal person's would be a normal person's vision would be and you know those are things so it to you no stop and really think about that she sees things so much differently so that experience for us was more like I opening to kind of understand how well that makes so much sense you know why she's so scared of stepping off the curb or you know stairs are really hard for her things like that so cuz her peripheral vision really effective as well so that's kind of how it unfolded for us is it you know her teacher had knowledge in that area and was like Hey like let's look at this and see and so she did a full function of vision assessment and then come back with moving some of those services so got you so that's what kind of said Wang from there how do you know how do you feel like that journey into the educational system has gone or you know what what has that I can you tell us a little bit about that journey and the process that you guys went through when you know what what you're from a parent perspective where things will explain to you about the individuals with disabilities Education Act and you know Vision Services you do that kind of thing work you do obviously I know Dennis this year a little bit about your fortunately people in the building who were very knowledgeable and you have a background in Special Ed but I wonder can I share a little bit about that journey into the world Building Services yeah when we had Gunner while we were living in Iowa and is 0 to 3 like the early intervention services were great they really worked hard with t d i o n m p t n o t o in a full schedule but they just were great with him when we hit preschool three year old preschool we did start run into problems with his IP and getting accommodations in his classroom for example was they did not put any Braille books in his classroom just because he was young mason but that didn't matter to us course we still push for it Dad actually took a whole year of fighting and it never happened one day they argued with me about not having a braille writer in the classroom and I asked him I civil what do the other kids do use to write and they said markers and crayons so one day I live happy self and they are $2 markers and crayons and just said well they can't write you know why so I can't read either and it was kind of an eye-opener for the teacher at that moment just one like oh this is this is a big deal like to be treated fairly so because we had such a hard time with the three-year-old preschool we were very nervous about the education seven that state so that is why we made the decision to move to Tennessee where he can attend the Tennessee State School for the Blind hey Ann. I just feel like he's really he's home there has been a great environment staff is even before we step in the door we had staff contacting us you know to set up is Services his IP 22 or the school there was a really great start at TSB okay so I can touch down little bit where we already kind of in the education so we found out about a vision impacting / education to so that's when we lived in Virginia and she lives in dodea schools with her the federal schools for military children so we move we have lived here and then moved there I'm her dad was in the military so that's when we kind of got all that started in that we had a pretty good luckily experience with getting those things are in like I said before her teacher okay let's look at this and then of course covid happened and trying to do those Services virtually was kind of challenging but we did kind of work through it and figure that out and then moving back here to Tennessee which I'd also already had experience with the schools here in Murfreesboro but she wasn't getting written Services then it was we have a really really great vision teacher here so that was pretty the process and she's done so much more with them more than we even could have asked for leaving could have thought about wanting to help you know she's kind of started teaching her how to use a cane and just getting different tools and accommodations to give her access to items in her curriculum you know that we would have even thought that she needed cuz you know like our brains aren't really thinking about like they see like you know some of the training that area would know so we've had a pretty good experience with that as far as Services go a lot of times I have to remind the teachers you know she doesn't know what she's not saying you know so she can't tell you I can't see the board because she's she doesn't realize that she should be seeing it better if that makes sense so I just really being able to kind of step back and put myself her shoes and then also you have seen her to advocate for herself and you know making sure her teachers are aware and things like that and that she's getting the accommodations and such. yeah I love that thanks so I made a connection here it does sound like both of you guys share some really powerful examples of it's picking up advocating for your children young sometimes it's you know very very she didn't say or or or sometimes it's a prolonged battle if you will look just continuing to remind I'm about your ear or your choice needs I wonder what can you speak to what has helped you feel confidence in speaking up for your children or the process of better understanding you know their visual impairment did you guys do a lot of personal research or you know really grilling the professionals at the medical folks the TV eyes you know what what has gone into can you feel your own powered that both of you guys are here today even speaking up and sharing yeah I actually found a lot of comfort in social media groups there's one I'm on it's like parents and Friends of blind children so I started there and I remember riding for the first time that you don't have a visually impaired child he's 4 months old what do I do like what do I expect and I had a lot of good answers specially from older children who are you know bro now in high school or just graduated high school and they were able to kind of get this call me down for a second and then give me some advice on how to raise a child or just some tips that has gotten them along so that was a good head start for me I think I'll learn especially after his three-year-old ipe for school that I want his voice to be heard and so for it to be heard right now my voice needs to be heard but I needed to Advocate and model for him how to stand up for his education so I still to this day he always sits in r i e p meetings he always reads a little statement about what work on and what he feels comfortable in and other than that it all started from social media just to find that empowerment from other parents yeah I love that were you it's just you know finding those other parents with going through the same experience or has been through the same experience I'm just finding someone to connect with the also not being afraid to have those parts relations with service providers and you know with the medical professionals and you know a lot of times we feel like you know the questions that we ask are dumb questions because you know the answers to that or you know what you're like we should just look it up. how to get the most accurate information with do not be afraid to ask those questions and while it wasn't necessarily vision-related when Denver started the a 3-year old pre-k program to we have some speech issues that we were trying to Advocate and getting her services so she can kind of thing you it is really showing her that she can ask for what she needs by doing it for her until she's able to do so kind of I completely agree with that Ashland to Rick's oh I wish I had something I was going to no thinking about the the teachers in your kids lives or the other Professionals in a medical folks this is building off of Jenna what you just shared are there any things that you wish those teachers and medical folks knew better or we could better into consideration about what a family is going through to better support them or engage with them you know I think you said you got you got a diagnosis written on a card or is there anything that you wish I could have I don't know if they would be more aware of or to be hello that improve their bedside manner sorry you can go ahead I feel like in a world like all of the teachers would be trained on every kind of disability you know that there ever was and they have all the knowledge and might like I see this for both sides to tell the teacher that I wish I was a specialist in all the bone you know all the things you know does not necessarily possible and even you know for the doctor's cuz we may go see the ENT and they're not really understanding you know what her visual impairment or hurt you other things that she's got going on so it's just really like I really I would say that I wish that we were able to just sit in like teach them you don't like have access to all the animation and all the trainings and all those kinds of things that would be if you don't give them the knowledge to best serve our students I think my doctor could have had a little better bedside manner when she give us the diagnosis it was pretty much while your child is blind here is his disorder contact your local Services we were just shocked deer in headlights pretty sure I was crying at this point and that I kind of laughed at that I think if like we would have had an appointment that appointment to just break the news and then maybe come back in like 2 weeks later. So we have time to process it so we kind of knew you know the questions that we were we were curious about after we processed the news so that would be a good start and also for his his preschool teacher I just wish you would understand that I peed more or understand why so important to me I don't know if it's just cuz she's coming from a teacher perspective and not the parent perspective I just seem like they're trying to get by with the bare minimum cuz they have never had a visually impaired child that was hard yeah definitely yeah I'll just share something personally for me I had a chance I think it was last year maybe around this time last I've been invited to share about the world of visual impairment to some some medical school students locally here in Nashville at Vanderbilt and they asked a similar question to what I just asked you you know what can better think about to you know be more apathetic as we work with families you know and one of the things that I remember sharing was remember you have because it in the medical in the medical world a lot of it is about kind of in my view solving puzzles what what you're trying to work through all the things you know that could be going on and and hone in on it here's the diagnosis and sometime what we've I've certainly heard from folks is they arrived at it they delivers in the message and you know that's the end of their work at a certain level right in terms of diagnosing and guess there's a going care and things like that but in NY tried to share to them was yo yes you've achieved what you your goal has but understand it on the other side of work is someone receiving that and they have never heard of any of these words before and so some help in recognizing that and understanding or helping them understand what that may mean form of hand-holding could just go really long way and I think that's what both of you guys have kind of spoken to has to some extent so but this is not about me it's about you and I still have a few questions here let me let me now could have Jump Around i m m x live before I go get going to folks who are here if you guys have questions ourselves that have kind of coming to my please be thinking about something you'd like to ask will open this up in just a little bit and I would love to have you can I ask a scar or guests you know whatever you have in a submarine in your minds to ask is what does what does Homelife look like how do you guys you know after things like Independence has it been a challenge for you to get to where you are today or you still see where you know areas of growth for you guys at home or in the community outside of the school setting what is that look like for you guys in families and supporting your kids well for us we use the example of parenting our youngest of our oldest son how we're going to parent Gunner for example, have the same chores that a status or gutter is still reserved is responsible for cleaning out his room or name that iPad time so he still has the same expectations we just not limit but we have altered things a little bit just like with their microwave he can make his own pizza rolls we just found the decal stickers put on the microwave so he was able to independently use it as well it took a lot of encouragement to Branch out of the of what seems different we wanted that for we just wanted him to also feel like he had to be comfortable doing this new task independently and coughing Italy with himself so just you know just some encouragement work out for us and he's just a little boy now he just runs around and rides his bike and his electric scooter and he is just happy as a good to hear that for Denver I think that she has accommodated her impairment so so well that she's like something I don't really notice it anymore like once she learns the house like cuz we've moved a couple times with her dad being in the military in like once he learns that house there's like not much you know holding her back so she's pretty independent she custom like gross motor things but she's always help with but as far as her vision goes our home life she know she has chores this is a little different for me too cuz she's my oldest so call Ashland said that she kind of used her older 12u no set that standard I kind of spoiled her a little bit for a while cuz I wasn't sure what she could do you know when she was younger and what you know how far I could push her with certain things so as she got older I realize that that was probably not the best idea but you know she's really stepped up there she you know how strong the house she's she rides a bike and she will buy she even goes for walks by herself in the neighborhood like she likes to walk the dog she got this little cat stroller for Christmas so she likes to take the cat for a walk in that she we had like she has to 12 she has her little phone that she also uses for communication is we have some of the accessibility features set up on there and she's going to figure out how to navigate through that pretty well but her you know day-to-day living is fairly normal for a 12 year old play that you know she can I get most of that credit to her as I feel like I haven't really had to adjust too much for her but she just you know. And kind of figure things out and what works for her and how she can kind of get through what she needs to get through I have a couple things I could probably keep going but I did offer or our guests and does anybody have a question that they like to impose I love you guys to get a chance to ask a question I have one at the future TV I are there any is there any advise you to give us far as like collaborating with parents like what form of communication do you feel like where works best with the TV I like compared to the School for the Blind versus maybe have an itinerant or for me getting emails is a good enough communication for me just as I can update how is he doing on his goals you know did he have a really good day that day that they were working with him I think communication is very much a key to his whole education at the system I think it takes a village so what does t b i I would still hope to have any sort of communication just good or bad just keep me up to date but always keeping that like mentation open absolutely agree to I feel like a lot of time with related services in general we have as a parent communication more with the teacher like / case manager more than any of you know those service providers so I think that our district uses cost JoJo so I'm really unconnected with all the teachers on there but I don't really necessarily hear from too many other than the ones that I also work with the situation different but so I think just like Ashley said just keep it at Communication open even just a quick email at the beginning of the year saying you're hey like I'm going to be your student TV I like this is my email questions or anything kind of you know like that just you know so they know who you are cuz there's some service providers that I'm like I don't even know what that person's name is because like I haven't ever heard from them as a parent so I think that that's really important is one till you notice introduce yourself and just let them know that that line of communications open any other questions for everyone else here curious your experiences with like navigating any extracurriculars or childhood social commence inside itch and like if you've received like support from TV navigated Gunner Gunner still a little young for sports at TSB but he does get involved in Peewee wrestling once a year and I love it I love every second of it it really makes me realize he probably wrestles his brother more than aware of because he's really good at it so that was a fun surprise for so do I sing outside of tsp my my son and we have but just friends that also have children so that he can I guess always that interaction time was cited. he's only he likes we have kind of like special adaptations like we have a basketball with a bell in it so he can play with the boys or we the football with a bell in it to play at the boys to do what kind of give him the tools and then let him just go play and it seems like he's done really good at just a starting of himself and becoming one of the boys too so he's I think he's kind of finding his own niche in there and he's doing pretty good that's cool this question may be super excited based softball with Miracle League I don't know if you've heard of that before it's I'm special needs baseball softball program it's a I think it's that are all I gets all over but Murfreesboro has a lie here so she plays at which is you know it's worth it shoe really wanted to play but with her visual impairment is not necessarily the safest thing to go for it but they've been so great and she you know she started off when she is like her fourth season playing I think she would hit off the tee but now she's actually they figured out like how to pitch to her to where you know she can and they use the large yellow softball so that's kind of out and she hits the ball you know being fits to you so that's something that she really enjoys and she feels like she's included with that and I was sixth grader this year she tried out for the cheerleading squad at her school and she did make that team we did have to you know make some stipulations that she wouldn't stop by or no be responsible for anybody in a Stein you know for safety purposes but if I wish I could share videos on here cuz she is just like that was her Jam like being able to do that but her you know TV I had you know some input with her coaches you know this kind of would work best for her kind of thing so that was really cool and then just like the knowledge with her playing softball the knowledge of her if you're sharing that with the the group that puts that together was pretty necessary as well so but those are and she's super social she's a super social kid your typical preteen are Social Butterflies so yeah that was that's she's she's done pretty well with Imo's kind of extracurricular time kind of things to so she really enjoys that have you both felt like you've had a willingness or wanting of you do a really high level of participation and inclusion in these kinds of activities from the get-go or you feel like at any points there was more of a reservation like I'm not sure what we can do when you do what what you know obviously I love where it sounds like both of your your kids are and today but can you speak to like just appeared of being uncertain and what has kind of gotten you to say hey I we we should try all the things yeah for us Gunner habit sensory problem he hated being outside cuz the birds he hated touching grass so it for a long time he was kind of in this little shell but I think as he heard his brother outside I think it kind of encourage him to start giving it a try getting out there a little bit and see how it goes so that helps encourage him is just seeing big brother and then that he kind of got in the mindset of life oh I can do that let's see what else I can do and that like helped fire some creative minds there and he wanted to get you know if you're able to find the basket on the football with a kickball with a softball the Beats so as long as we were able to help him with those materials he kind of turned it into whatever he wanted it to be let you know whatever works for him yeah there was there's definitely been reservations album she actually wanted to try out for the cheer team last year as a 5th grader and I we were brand-new at the school so along with you no kind of worrying about her safety and that I was more worried about her feelings and like I was a little worried that she wouldn't make the team and then that was going to really hurt her feelings so I kind of talk to her out of that last year and not knowing you know what that would look like for her and then she just kept all you do it so we would have had with it this year but hers also like with multiple disabilities she when she was younger she did play soccer but she really struggled with that so after that we kind of took some time off and didn't really do much she did like gymnastics and things that were in a smaller group but yeah they're definitely like I can stay there definitely was times when I had reservations about you no kind of jumping into those organized sports that weren't specifically for children with you know special needs how she would keep up with her peers and you know how that would be safe for her time that she want to play basketball at one point in time and all I could think about is you know this ball coming back off the basketball hoop in hitting her you know Soda there has been you know many the reasons other that be from a safety standpoint or you know protecting those feelings of hers just kind of worrying about you know other kids not being so nice about it that were on the team but we were very very last with you know the cheer squad that she was on this year did like all the girls were supportive and gray and friendly and we didn't have any issues and she's like I said she really enjoyed that so it just just a quick follow-up it helps to know that a plan could be put in place for accommodations and safety and also obviously the social aspect has put you out of used to know that it is a welcoming environment and that's it yeah yeah I remember that it never hurts to ask and it never hurts to try and not you know one thing I had to kind of get through is like I didn't want to inconvenience other people here I mean bye I'm having to do more to accommodate my child but you know it's only fair for her to have a chance that you know at doing these kind of things as well so yeah it never it really never hurts to ask or you'll find some way for her to be included going into middle school next year cuz the way our schools are set up here she's still in elementary and 6th grade this year I already kind of hate you know have those anxieties about know what that's going to look like for her so just you know it never hurts to ask Advocate and you know try to get them involved in some way even if you know like I already kind of thought like maybe she won't be on the TV maybe she could like help be a manager or something like that you know to where she can still be involved with certain things Rachel. I think you said you had a follow-up question for both of you just maybe like a smaller logistical question of how did you first discover that like Bieber ball I just said that the mirror Miracle League existed just thinking both from the perspective of like recommendations families might want of like where to find stuff but also for like me and my students is tvi is like what do you where do you recommend cbi's our own a two-point people to you as well if so from both parent and teacher perspective I think that we found out about people balls and all that from parents on social media even I think somebody sent us softball a beeping softball and we would just roll it back and forth on the on the carpet I kind of just get him used to Astound getting used to know it's coming his Direction was say it louder out of them so that's how we kind of got started Maxi AIDS is a really good resource with items you know for accommodating or from like talking socks and until I call us some sickness sport ideas that I think Maxi AIDS has been one of the popular selections for us so we found dial again on social media through different pages and also I'm definitely looking for like if you have a local like parks and recs Community they are there's a lot of services that they have it we didn't realize that they had but we had friends that their child played for Miracle League so that's kind of how we found out about that just really talking with all of her service providers like her physical does he know her speech therapist her TV I like her teacher just you're really having those conversations and saying you don't like do you have any ideas that might help with this or might help with that and just kind of be interacting and you know collaborating and really just having conversation than asking questions to really you know see if anybody else has ideas is really kind of collaborate with all the resources possibly can get your hands on you no other students other teachers other you know just anybody that you come in contact with you know like you met the lady in the checkout line next you may have you know a cool something I hear you're going to be great for my child like I just discovered that this was really cool accessibility feature on iPhone now that she can type it it'll speak for her you know with one of the new route so I try to share those things on social media to so like another parent sees those things they can do like I do that you know something my child might do too but definitely like I mean what would we do without social media like I feel like that's what I've learned everything on him maybe just a little later on I might need you guys to type the names of these groups if you can think of them off the top of your head you know where that out at some point if there are no good places all right any other questions before maybe I keep going or ask a couple more here let me start with this one so what what are some of the tools that you're your kids use to enable Tim them to you participate in in school or with Braille related technology Jenna not sure what your daughter might use what are some of those tools that they do use and you know what is the primary use of those and how comfortable are you with you know how that all fits into reading and writing and all that sort of thing can you take care of it but about what they use today is a braille reader he also has lots of practice on an iPad 4 would we have virtual so we did a lot of Zoom calls and stuff on the iPad and he just recently got computer the computer was also for just in case. virtual learning from the snowstorm so we don't we haven't explored the computer just yet I feel like I've just got to let it go of the iPad but he's he's pretty fluent with Braille writer awesome when looking she has lots of things but cuz again multiple disabilities buttload looking to sit Vision she uses a magnifier Dome I think it is some sort of pain she uses and I'm I couldn't even tell you certain quite what that is I just know that they refer to it as her pet I'm sure I have information on it somewhere and she uses a speech to text software on the computer as well so that kind of helps they're trying to think what else uses they have done some training with a cane and she does have stairs in her school so that's been in that using a human guide as well within the school setting just to help her navigate those stairs safely and then you know to do the crowded hallways and things like that as well that kind of helps since I'm not knowing this I'm going to now jumping two cans ask about that do you have any comments on just orientation Mobility I have gone for your your kids and the terms of the the priorities there are you comfortable getting out there and to the community let's go wherever or are there or any environments that you know what you're super confident about General Ashley music Ashley sorry. There's a little more hesitant to use his Cane in public areas I think he's just doesn't have the confidence built up yet we're outside of is like at the house you know that's cool he's very comfortable with it I think he just has a good mental map of the school and have our house but it when we go out in public he's just a little you working on it I think that we've had to push him out of his safe comfort zone and instead of just accepting that he wouldn't use his Cane I would say oh you need to try you know how to do more firm with that answer rather than Let It Go so I think it is a little tough love on my part also but he's had construction ever since he got his diagnosis at 4 months old so he's always been introduced to the cane and that is his means of travel just started using one at school this year we haven't used it outside of their she's pretty okay crowded stores and things like that make her and me a little bit nervous so kind of gold 44 like using a human guy like she'll grab onto my arm or her little brother to insist that has started to kind of help a little bit which is kind of cool to see with her as well but against you'd like her Visions a little bit more functional so she can see it's just like it's being able to scan and you know when it's crowded and more visually busy than that a struggle for her like I said as far as the Kane goes we have a we have not we do not have one at home so she's just kind of child that it's cool to kind of see if that's something she needs or if she's you know okay without that but at this time we haven't really talked about moving it outside because she has just done so well accommodating you know I'm just overcoming those obstacles is kind of figuring it out as she goes as far as orientation Mobility goes or you know using someone is with her as well so all right well I am more or less I think at the end of my list of questions and we're coming up right around an hour I Wonder Maybe do you guys have any you know I just I'll leave it to you guys is there anything that you would want another parents of a young child or a newly visually impaired child you know coming into this what would you share with an apparent of coming into Bran Bran fresh and you have no idea what's going on what would you want to share with them and I remember being in that space someone probably kind of told me to calm down and relax and then I am not alone and we have this whole world wide web Port that's out there that wants to help you both visually impaired adults and adults with visually impaired children she's getting like Best of Both Worlds there to definitely find that Village and make a good strong Village out of it cuz there's going to be days you're really going to need that support also can never stop advocating whether that's you know teaching your child to speak up for themselves or maybe you have to be the main person and speak up for him or her or her for the IP and to just never stopped the fight so there's always going to be the ones are the willing to learn more about the diagnosis like still every day there's new stuff on l c a What treatments and trials so you just have to keep on learning and I don't think that's a bad thing I think we could always continue to learn from ourselves from each other from conferences so I would suggest to hang in there and the breeze and just take it one day at a time not when your parents are this just now coming into the visually impaired World Odessa you know kind of say the same thing just stop take a step back digest you don't give yourself that time to process right down the questions that you have don't be afraid to let you know send a message to that doctor or ask for a pull up you know even a zoom call to just ask those questions you don't get your questions answered do the research find out you know everything you can find out talk to other parents that have been there and you know like Ashley said just keep advocating you know keep fighting for what you know your child needs in this is kind of got to bounce back I was thinking about this earlier when we were talking about what we want from the doctors and from the service providers is to just remember that that parent knows that child the best like they may not know the medical side of it but they are with that child the most and they are seeing what that child can and cannot do all the time so remember like don't second-guess yourself like don't doubt yourself you are what the child needs and like advocate for what those needs you might think those needs met that's great thank you so much any any final truly open-ended thoughts that you'd like to share before we end and I have nothing left on I'm sad I think I'm set it all yeah I just just good luck and you know where you know ask but like I said I said and don't be afraid to push for what you think that your child needs so thank you so much I really appreciate you. your time your thoughtfulness and sharing your personal experiences of just supporting your kids from the beginning I'm so fired up and encourage that kind of hear your your examples and I hope that when we get this shared out many many more will be able to hear from you guys and also get fired up so it's a know that you have this is this is you know yes there's going to be challenges but absolutely when you advocate for your kid and I'm get out there are good things are going to write be right there and it'll be so thanks everybody and we will see you at leave the session thank you so much. Thank you

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