Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux
and I’m Lori Saux.
We have the pleasure of being joined again by Julie Picot. She’s a mother of two little girls Jasmine and Elese. In our first meeting you may remember she discussed some of the misinformation she encountered and how she dealt with some of her fears after Elese was diagnosed with Down syndrome. Today we talk more about future technology, stereotypes and the dangers of preconceived notions of Down Syndrome. Julie welcome back to If We Knew Then.
It is really good to be here thank you it’s nice to spend time talking to other adults when I spend all day talking to two little girls right well we we always look forward to talking to you Julie we had touched on it a little bit in our last conversation but I was hoping that you would share in a little more detail what your actual experiences with down syndrome are compared to what you thought or you were told it would be yeah I would experience in Ben and different from what we expected is it’s better a lot more happy than we had expected I guess you know there there is so even with all the research there is stone many unknown accounts %HESITATION that after she was born you know even though I had this feeling like okay she’s just gonna be a baby for a while and what is the BP but loud you care %HESITATION whatever that might be whether it’s medical or on just your typical care but on she just she’s at least you know she’s just so her and we’ve just been so happy and on I remember reading I I had %HESITATION somebody sends me for information about Christopher when I was pregnant and %HESITATION I don’t know how familiar you know you guys are with CRISPR but one of this is the technology person say well I’m raising my hand right now I I do know yes and the other one is just look at me go on okay we’ll talk about this later you fill me in later you can find and isolate %HESITATION genes or chromosomes and with the potential of eliminating genes are on chromosomes and I and I was looking at that and I was also looking at %HESITATION surveys that were done with families about CRISPR and I remember reading line that said that parents who have children with down syndrome were asked if they could use CRISPR to reverse their child down syndrome or if they could even do it now at whatever age their child is with they do that and it was a very high percentile it was up in the nineties of the parents had said no but they wouldn’t do it and I just at the time at all that’s really interesting I think that’s that’s really interesting but I didn’t really know how to absorb that I didn’t really put up too much thought into it because I just didn’t understand it and that was kind of an unknown to me right so I thought well that’s really a wonderful thing I don’t really understand it all and it was it you know really looking at Chris for for at least you know right I had a that was one of those things where we were already content with her having down syndrome at that point it was just somebody trying to be helpful and they’re way thinking like you know maybe the three helpful plus you’re in the wrong time you’re not you’re not quite there yet we’re not quite there yet but right as of as a full option to you know no not at all and but it is a great hypothetical right and I think that will be something that’s supposed to a lot of people in the future but I %HESITATION now I totally get it I never really do I I feel like what there were some expectations on some level and it’s hard for me to really put them in words that things would be so much more different than they actually are but somehow my child would he’s so much more different personality wise or something you know I I didn’t know it was really hard to I understand that and it’s not I mean she’s a lease and she’s arm I’m not and she’s funny and she makes us laugh and she’s earned and %HESITATION I just I we’re just happy we’re so happy and and that goes back to it so you know what if the before about if I’d known then I just cash it would’ve been so much easier I just want to have worried half as much I may read the same article about Chris Burnett led me to another article about Justin talking to families that included a someone with down syndrome and and how they felt about their family and and they as well they had a very high percentage of happiness or what they said how happy they were in and also the individual with down syndrome how happy they were about themselves how they felt about themselves and they looked in the mirror if they thought they had friends if they thought they were popular what they thought they could do what they couldn’t do and they and it just makes me go back to something I’ve said several times where there are things about Liam that I am so comfortable with %HESITATION for all the things that we say we are concerned with you know that is there a way how to guide him to adulthood and in education but things I am I don’t worry with with him things I may worry with Sophia there’s no guarantee of service before is no guarantee that that either one of my children are going to love themselves when they when they grow up or or %HESITATION but they’re they’re gonna be happy you want health and happiness and there’s no guarantee but I don’t stress about as much with Liam because he he has something where he is a confident kid and he he’s loved and he he knows it and I you know I want to I want to talk about because you said the that the article or the information on CRISPR whiskey I’m so glad I didn’t have an idea I don’t know about it he had reached Laurie I think that’s why I think that’s why he doesn’t tell me about those things because I’m like why did you tell me about that that’s horrible %HESITATION and I decided by related she’s but I think go no not that it’s just that that you would if it was just sci fi that would be one thing because they’re so you know flying cars and everybody’s going to you know where aluminum foil type jumpsuits and I like jumpsuits but this isn’t just sci fi this is again trying to eliminate down syndrome and they’re trying to and it goes from it goes from a place of fear to say there’s there’s very few other things there’s nothing else that’s joyful and good for your life the people go yeah but let’s get rid of it the things that they do they want to get rid of are you want to get rid of that you know you want to get that mole checked you want it you want to you know get some arches in your shoes for a flat fee that you you want to get rid of that and it’s never in a positive comment connotation and I think that’s the thing about this CRISPR is it’s it’s not being presented by you know what we can do is we can help increase the tone so maybe he doesn’t he can help respond to O. T. better you know or any anything like that help strengthen the tongue so that way speech develops better or the neural pathways because there’s three neural pathways and development of speech so we can work on one of those to to help him reach his potential that’s not what we’re looking at they’re saying let me help you here I’m just gonna take this away and why would you take away something so great so you’re looking at you know here you have this person on the outside whose probably someone who loves you and real or really cared about you know that was like I think I can help you and you know and bless you for just having that mmhm you know motivation to want to help me but I and I think that where that mis judgement and motivation is is that people on the outside are trying are only coming from their perception and I would venture to say that they wouldn’t understand that I wouldn’t change my that would that would take away my son that would make him someone totally different right that would that would change that would that would change your not just changing his eye color you’re you’re you’re changing who he is you’re changing all the good that came from any challenge that he was given and and so and I think that goes back to you change what he taught us to and what what are your chances what else what do you what do you what other how are you going to change us because this now you’re taking away this gift and I really don’t I I think that I believe that the amount of people on the outside that would understand what what we’re saying back now I wouldn’t no way I would change it is few because I think that there’s so much fear out there and there’s so much misconception that that they wouldn’t understand that and %HESITATION just like you admitted that you didn’t hear like I don’t know what to do with that because you don’t know what you what right you’re like I don’t I have I get that you yeah okay but you didn’t really understand it till later and then you go oh yeah I know I get the answers to it and I think that just comes from you know just that move misperception of what down syndrome is and and I and I love that I’ll I’ll I’m so glad you brought you by hypothetical question always takes me to kind of a movie scene of like going now we’re flashing back to our child doesn’t have down syndrome and then how are we different how is how is Sophia giving them Souter how are other family members and friends different how how would it have changed our entire life and that may not be for the positive yeah well I think it’s a a problem that we as humans eighth is that humans in general think could be very tribal and that’s why inclusivity is so important because when you grow up with people from different backgrounds and different thank you for all kinds of diversity the more you have then when those people are those differences are under attack as an adult rather than debating it simply on our theoretical standpoint you’re seen those people face you’re seeing your friends faces and remembering when they were hurt by having those things said to them and you’re remembering what they’ve brought to your life and the fact that somebody is thinking they should be removed or taken away and that’s where we really come to people’s sense of because they’re part of our tribe then and something that could take away the diversity just for the sake of difference is the %HESITATION kind of a dangerous thing yeah it is and I tend to eighty %HESITATION interview with the the woman who %HESITATION developed CRISPR and she had a very interesting thing to say she was saying she had a dream and she was being brought into a room and they were telling her that he was very interested in car Chris Burke and she came in it was a dark room and there is a man sitting in a chair behind the desk with the light on him and when she saw his face it was Hitler and he was so eager for her to tell him about her Christopher and that that really took her back and that she was very concerned with how do we know that this thing has been created how do we rein it in how do we control and then the larger question is too can you control that that was a lady who developed the crisper yes %HESITATION does to her friend just even revealing that dream right that’s it that’s a great honesty that’s that’s coming from the person who at one point thought it was a good idea but I and I think it probably does that is a good idea I think it does have a lot of positive benefits that we just you know right absolutely %HESITATION so so does atomic fusion too but that can be taken in in a right way and a wrong way right okay so %HESITATION how the military is going to get their hands on CRISPR we know it so we’ve we’ve seen we’ve seen the Avenger movies %HESITATION so your experience you’re saying your experience compared to what you thought it might be is there’s more joy absolutely and what did you know about down syndrome going into a meeting %HESITATION lace and how has that changed I feel like you were pretty educated I was I guess somewhat well read on it but I again I stopped researching about four months then it just me myself and step away from that but %HESITATION I didn’t have real experience though with down syndrome you know I I had a friend who had a cousin who had down syndrome %HESITATION I met once I on one time it went to a classroom that %HESITATION had a little girl with down syndrome and and and help to walk her to the office and just thought what a sweet little girl you know but that was that was that that was the extent of my actual experience %HESITATION when I grew up we didn’t have inclusivity in our elementary schools and on and in high school then you had just a little bit of an inclusivity but they were still so separated and I think that is because so many especially teenagers and that awkward stage we didn’t know what to do with it and if they didn’t approach us you know it’s like you don’t approach them just kind like with any teenager but also when there’s a difference that you’re not used to you feel awkward about it and you’re not sure what to do and you know no bad feelings but just when you deal with though there I didn’t have that in my life and I should have and I wish I had had that and on so I I read and mostly what you read about it all the the health issues %HESITATION cash it’s like you know there’s just a huge list of of health things and on so I just with that’s all in there really and that there is a wide spectrum so it there’s no way to know where your child is going to fall on that spectrum as far as like cognitive development %HESITATION tone and %HESITATION so yes I feel like it’s like yeah I read but I still felt like I didn’t know very much and I feel like the best information I got was from my husband’s friend who he called when I called my friend Karen he called his friends who had a daughter with down syndrome and and he was so critical gradually Tory too and and you know it’s like I know this to me I want this to scene you know and personal but I think I can get giddy when someone says that they’re going to have a child with down syndrome I know how much love it brings into the world and %HESITATION I’m not quoting him accurately I’m sure but he he said to Erin and Aaron sends me in cash that’s just awful the thought then this kind of it’s more with the down syndrome thing is that you know people when they see someone because down syndrome is for the most part not you know everybody’s different for the most part it’s visual you can see them people know that this person has down syndrome where you may not be able to necessarily look at anyone else and no you know what they are if they have a disability or if they’re going to do anything right on it so I would approach them more readily than they might and smile and say hi because even though it’s a stereo type their stereo type and like you said that they’re angels right that there they’re just happy nice people the internet stereo type that happiness comes out and that she their daughter is friendly and they’re friendly and they would smile and his thought was just gosh I just wonder sometimes how much more love we would have in this world with more children with down syndrome and it even though we knew you just never know what will be your child’s gonna be you don’t know they could be very quickly but %HESITATION it really made us go okay love them we just really need to hold on to that you know in the end it’s all about love anyways for any child and that’s probably the closest to what our experiences ban with down syndrome rarely well you understanding the beauty of diversity %HESITATION and then also accept the fact that that’s not how you grew up it’s pretty awesome to think about that your older child is growing up with that and how this is going to reflect in her life and I think that aha moment whenever it comes because I think it took us a little while and and our process of going above everything else just the love this is a really that you’re you you really I mean lamb will go to the grocery store and so and I’ll always be like lamb state you don’t say hello to strangers but he’ll be like Hey how you live years walks there’s like wave is right around the corner from his school and so he knows like a lot of people in there and I think for my personal I just %HESITATION inside first of all I’m like I am I tend to the private side anyway and so I just in my god I would be like %HESITATION cash people and because I’ve been approaching grocery stores before when he was very young and I think people are gonna think that another good and this and all these things we go through my mind and here he is just go in like Hey hi five hi for an and one day I just saw it there was these three really cool people are enough whole foods and day I mean you just looking like there’s a three core hipsters and a whole you know touch getting whatever for their lunch in the inbox because half five and the change that came over them that they were just like yeah buddy had five and it was just like whatever garbage I got going on inside of me that makes me judge or second guess any of that if I can’t look at the beauty of that moment and go the world a better place those people are leaving this whole foods with them at a hop in their step and even if it was just that one moment there was just like a spark of his Star Wars I feel as though there was a spark in the universe with the up you know it’s just like it’s this guy it’s a great it’s a great great thing and if I can put if I can put the garbage misconceptions that you know we’re spoon spoon fed to me and and %HESITATION and gave me like a little bit of judgment and my core if I can take those and just just just wait my hands of them up and see at the moment that I could go and go it doesn’t matter none of that matters what people think done matter what people see doesn’t matter what I see matters what he sees matters what he does with his life what he believes about himself that’s what matters and then look at just his pure like Hey buddy hi five I’m not going up to the hipster and saying Hey hi five but Liam will go up to just a man how you doing he sees someone you okay and he’s he was like nine at the time and you know it’s so it’s it’s it’s that I think that two that moment where I could I could go all right that’s it that’s a really good thing and how can how can it not be anything but good right great just love right and then so what were your main concern whether it be when you are pregnant or you know even now or when when Elise was born do you have anything that was yeah there were a couple of things that I felt like %HESITATION probably are pretty common for people who are pregnant with children with down syndrome and maybe even other disabilities on I know that as I was nearing the time when she was gonna be born and %HESITATION my doctor wanted to my regular doctor OBGYN wanted me to consider how to being myself induced %HESITATION a couple weeks early because %HESITATION just for safety reasons because I. as pregnancies go longer with %HESITATION down syndrome there is a higher rate of death than there are for typical children and I just but I and again this is I don’t want to say anything to make somebody I think that this would be a great decision for them because it’s different for every single person and for many people being induced maybe very much the right thing to do for me though I just knew she would be fine I knew she was gonna come on I’m fine it is a very fine and I and I had to push back on that and but she listened and and she was this man sure enough police on was born I. D. the day after a day before a camera now then on her estimated normal date of arrival and then after she was born I think something that was a struggle for me and I think god that she was my second child in this instance because that she had been my first child it would have been really difficult with the after she was born she she left and she started nursing but I think because there’s a lot of information out there about that not always been the case that %HESITATION what happened was nurses and lactation consultants and different people are coming in on a different times wanting to see her accent but I couldn’t wake her up more than every four hours and she just went wake up and so they couldn’t see and I went oh she’s nursing she’s there thing fine may second child I know she’s she’s fine and they didn’t believe me and they kept coming in and going well can you wake her up and I hope I can try but she just nurse two hours ago can you just come back on a four hour mark we’ve been and %HESITATION my OBGYN came in at one point while she was there she was like oh my gosh and I said yeah and I was like can you call an interest in the Houston or nursing because she’s thirteen but they still wanted to have a lactation consultants the that and it was so frustrating by day two in the hospital they were telling me to take syringes concerts wrench feeding her going on you guys and when it comes to data management %HESITATION on strict and so I actually had brought with me I’m not sure why I decided from this with me but I had written out on days that end days and times that jasmine my first child with nursing over the first like week and I had this with me and so I pulled it out and sure enough she was only nursing every four hours and for about the same amount of like the times I said look at this see what I have and I was like he’s doing the same thing my first child at and they were like whoa okay that’s neat you have that but we still need you to try to take on syringes to feed her so we go home and we get the syringes out and I’m thinking of my crazy am I losing my mind is she not nursing but knowing that I’m right but so we take the syringes and I and you know it takes it took like an hour to get her to feed by one of the syringes and I’m crying because I’m tired and you know how you feel with all of this and you know just the newborn period you’re just exhausted and %HESITATION I just like I’m not gonna do that and so I nursed her and they had it coming in the next day and she was home to more than when she was born which is really unusual for your typical child usually they do lose a little weight and then the big gain it back and so they finally listened to me on that she was nursing and I thought you know that was really difficult emotionally and had she not been my second child and had I not been able to nurse my first child then I would have believed them and I would have maybe given up that would have been quite the roller regression for her too right right so I I’m I felt really fortunate in that and then I found out later I was checking on our charts online because we had gone in person on something and there was a note in this chart at the hospital the day should mourn having problems with nursing right without latching and I thought click that that’s why all these people were coming in and I asked my my pediatrician if she would have that removed because I don’t want that to be included in Dallas that that then are not going to give an accurate picture and and of course many children with or without down syndrome have difficulty latching and you know I just don’t like even if that was the case I wish they’d been more supportive that rather than just throwing different because everybody was trying different ideas and concepts depending on who is coming and what they were saying %HESITATION I really wish there had been a more supportive environment around the latching thing period regardless of the situation I thought cash you know anyone going to this is not going to be getting the support they need otherwise I had a really wonderful team and I was very happy with how everybody you know treated us with it like that with your first daughter as far as so relentless and no not even close because because she was a typical child I’m sure of it did you say anything to them %HESITATION I did over and over again and had that sheet out and %HESITATION it was it really did it felt like I knew it was coming from a good place I knew that they were all coming from a good place but they were all coming at least as down syndrome they weren’t coming at least at least and they were coming at me as he a mother who went through what was not %HESITATION you know really had experience with the thing with honestly telling them that it’s fine %HESITATION so that was that was a difficult at times because in general that’s a difficult time and just to have that piled on top and I just thought well gosh that you know that shouldn’t that shouldn’t be the way women experience those miserable days regardless of the down syndrome it shows the dangers of preconceptions you know you have someone in the profession that has these variances and they use that so forcefully and in how they’re looking at this new bean who who who is is limitless but they’re going to use those perceptions told to limit and what and yes we did we experience that in the Nick you where where lamb was actually alive ten days without a diagnosis so we actually watched how Liam as a premature baby was treated and then the shift when the diagnosis came ten days later and there were a couple of nurses that didn’t skip a beat they were just the same day they went they went on with exactly the same support what they were doing and really still you know that fight helping them %HESITATION to a fight for his life and then but there was definitely a shift that we saw and felt and it goes back to that you know the impact it has on you because all of a sudden your child isn’t that the same child that it was a moment ago or the same child that maybe your first child was that’s one that has all the potential in the world it’s it’s now now we know what this is and this is what you know and and so that it would be nice if that didn’t happen anymore when that if you could just yeah you got yet we I think it would change I knew it would change my experience just to be able to actually just experience and enjoy my child %HESITATION we take a CRISPR scenario that would actually just adjust the rest of us to think only can we go back in let’s fix us hypothetically can we go back and have everyone all the medical professionals that we ran into our our teachers or whatever everyone come from this the best place you can come from right and and it’s funny how you you say I didn’t want and want it written in the chart that shouldn’t let John because that’s that’s a that’s something that we we continue to do it’s a bad thing that’s a real thing and that chart and going broke just a flash in the school that’s one thing one sentence and one reason why there’s a median and someone says something or if there’s a report and something’s wrong that that we have we’re meticulous and no you’re not you can write that but right now I’m gonna tell you that’s wrong and that’s going to go in the chart along with what you said and along with this proof that that is not an accurate depiction so it’s it’s a it’s something that you know just it’s funny it’s not funny and the way like ha ha funny but it’s funny how that becomes so important and it shouldn’t and I think that’s what creates the mindset I knowing me of I don’t like to care what people think but there’s a certain level of like responsibility that I have to make sure what’s written down is accurate because in other cases you could be like Anna of the ceiling of whatever’s in there whatever they think but that doesn’t it’s not the situation with lamb as like their their opinion weighs heavy and their opinion like with you is their opinion of your daughter affected so much your first two days right and to know that you are able to document just as much right to their charts are you always have that and put in a child’s life you always do and that’s one thing I try to encourage parents and and let them know is that you have that input you always have it and and you know you’re the parent you you get to say your side it’s not just someone telling you what it’s gonna be it’s you saying I understand that you’re coming from a good place and this is what you now but this is this is what we’re doing and this is the reality of that Julie thank you so much again for giving us your afternoon and all your insightful information and questions thank you I really appreciate the opportunity to be able to share with the community and be able to get information that I can use for my little one thank you.
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.