Hello and welcome to the IF WE KNEW THEN podcast. I’m Stephen Saux and I’m Lori Saux and today we’re joined via Skype by Julie Picot.
This is our first ever conversation with Julie who’s two year old daughter Elyse has down syndrome.
We met through a mutual friend and future guest of the show, early interventionist and child development specialist Caroline Bencze. Julie thank you so much for joining us today.
Thank you so much.
We are so happy that you agreed to come on our show and share with us your experience because I feel like you know you know a lot of the questions that are out there and that we have questions for you too.
I was just talking about this today with our child wellness specialist which you guys also know very well and we were just discussing how it’s really easy to get sucked into having your child put into a very specific box because they have down syndrome which I’m sure is true with autism and I know is true with dyslexia and all the things but every child so different and every parent’s experience is so different and all of their unique challenges or obstacles they might have. That it the more that’s out there the better because I feel like listening to you guys it really felt so similar to how we felt but that doesn’t mean that’s how I would feel listening to somebody else. So it’s great that you guys are doing this.
You know sometimes you hear your voice in someone else’s story and it’s when those two things line up that you feel like you can benefit from the fact that hey maybe there’s someone else that’s dealt with this or is dealing with this or is celebrating this. Whatever. It is then that you feel a commonality which is comforting.
It’s really that what you said about everybody has different challenges and everybody thinks differently so not everybody thinks the way we do and I know that’s that’s been one of my challenges. And there’s even times when you feel like you’re the only one who thinks this way. And am I crazy? What am I doing? Am I just hitting a wall? You know especially right now with the distance learning. I sit with Liam sometimes six hours and we just, you know, we do what we do and we approaches lessons like we approaches lessons. How he learns, how Liam learns. And it takes longer than people say. And then people say “oh you should only be doing to you too two years” (laugh). That’s how it feels actually. You should only be doing two hours at a time or two/three hours at a time and I start to second guess what works for us. I mean I’ve been in IEPs before and I said I want Liam to be held to the same expectations of his peers and I got a scoff. And they were like “I’m sorry you want him to be held at the same expectations?” and so I repeated myself and they asked me so many times, that buy like the third time I was like “Wait wait! Is that right is that really what they…?” I started to go wait a second no that’s what I want right? Because it was so unheard of to them. And I don’t blame them because that’s actually kind of where we are in society and education. And the changes are very slow. so I understand that that’s why they’re looking at me going “What are you kidding?” but if you don’t have anybody else who thinks like you, you can start to doubt yourself.
Maybe you could tell us a little about yourself.
Well I am a 44 year old newly stay at home mother. I actually had just ended my work with my last client in January before all of this occurred and I live with my husband and we have a 5 year old and we have our daughter Elyse who is a 2 year old and she happens to have Down Syndrome.
Yes and this pandemic has really changed the job description of stay at home parenting for everyone.
You know we’re all dealing with different challenges related to that. I feel very fortunate and I know there’s a lot of people who are not in that position that we are in but specifically being a stay at home mom I feel like having my husband here is almost kind of like a gold mine. And I know that eventually the financial aspect will catch up but for me it’s actually a real relief and very nice.
Yeah, it’s not that way for a lot of people but that’s really great. We kind of feel that we’re trying to take advantage of this time. Both of us being home with the kids and we are seeing if we can not only keep up with the instruction but see if we can make a difference and advancing some.
Now your child’s younger so we’re not really talking school age but when your child was born you did know that she had Down Syndrome?
Yeah we found out when I was about 10 weeks along and they called too… we thought they were going to give us the gender and we knew at the time that I had about a 1/60 chance of having a child with Down Syndrome. And we, you know, had had conversations before, that no matter what happened, that we were going to have our child and love our child for who they are, not because of who we think they should be. So it still came as a shock. You know you’re never, I don’t think, really prepared for that. At least we weren’t. But I remember answering the phone and I was so excited to find out and the way that it was presented to us was like well well kind of: “Hang on a second.” Right? “We have something we need to tell you.” And I do want to say that my OBGYN it’s a lovely woman and she’s been very supportive and I’m not sure if it is because their not sure how we’re gonna respond, that they want to make sure that they are being empathetic about the way that they present it. But from my end it felt kind of like I was receiving bad news. So when they told me that she…um, the test had come back in so there was a very high percentage chance that she had Down Syndrome, I kinda just processed it at the moment like “Okay.” And they said okay. And I mean okay well we’re, you know, we’re going to to keep our child. And she said Okay. And I said well can you tell me… did you get the gender. (laugh) And so I said okay don’t tell me. We still called because it’s just the three of us: my husband and my then 3 year old daughter and I were gonna get a cake and find out that was a boy or girl based on the filling. And so that was how first found out and so then I got off the phone and shared the news with my husband. And that, you know, that’s a whole other process of processing.
We discussed that before too where we where this adamant; whatever happens happens. And then we knew there was a chance and then we found out after Liam was born, 10 days after his born, when the test came and it still rocked us. So I think it’s something that you can kind of prepare for but then when you do hear the news it’s kind of hard not to be pretty shaken by it.
Yeah was for us. We were definitely shaken. You know at first when we found out we decided that we didn’t want to call anyone and talk to them about it. So we got our hearts and minds ready because we knew that this was our child but we also understood that different people have different viewpoints and things. And all the people we were going to tell we felt like we’re gonna be coming at it in a way where they were trying to do something supportive for us. Whether it was, you know, crying or. We didn’t expect to get congratulations but we did get that a few times and that was actually really heart lifting. Or if they were gonna say like “Oh. I could never do that.” or ‘What are you gonna do.” We wanted to make sure that we were prepared before we called to tell people in a way that we were telling them good news. At first it felt like we were maybe going to be grieving this idea of who our child would be the whole pregnancy. And we were almost like “Well why did they even tell us.” You know now the whole pregnancy is gonna be a big about this grief and it really I felt heavy on us. But we believe in God and we have a relationship with God and we really prayed on it and we decided the next day that he was going to call a friend of his who had a child with Down Syndrome and I was going to call a friend of mine who I know also has a really personal relationship with God. Because I feel like when I’m grieving, sometimes I don’t hear very well when I’m in prayer. And we knew they would both give us positive reinforcement. And that’s what we needed. And really, after those conversations, it lifted us up so much that we still went a little bit back and forth in a kind of a grieving state for a couple of weeks. But then after that, it was mostly a high. We would have those moments, for sure, where we would look back in and cry “Oh, what does this mean for her? How are people going to treat her? How is she going to be able to live in the society that we live in and be treated the same way and have the same opportunity?’ But we actually had a really good pregnancy for most of it .
Well that’s that hopeful side of things that I think we would like to see the medical profession do a little more and I think it happens. It’s just we didn’t get that. We didn’t get it as full as we wanted it. And I think that you’re really blessed to have had friends that you could rely on, or family you could talk to.
I wanted to ask you because you said when you got the news that it felt like you were getting bad news. What about that conversation made it feel like it was bad news?
Well a lot of it is in the tone of voice. Being one, more of and empathy verses one of excitement. You know what you’re getting to know the gender and they’re saying “Well it’s a BOY!” There’s some excitement there. It was more along the lines of “Okay so I need I need to tell you something. Your test came back and”. You know I really can’t remember the exact words used but it was pretty to the point. And after she told me, she was kind of quiet to wait and see how I would respond. And then I said we’re going to keep the baby no matter what. She was like okay. You know and then we went on with the conversation. And I know everyone’s different and so it’s hard I suppose for especially a doctor who’s got all kinds of issues that they deal with. Their own personal feelings and also probably liabilities and all kinds of things with knowing how they should tell someone. But for me personally, I would have loved to have gotten: “Okay so we have some news for you it’s it’s some good news. It’s different news though.” Yeah but that’s so easy to say you know just for me and especially looking back I think that that would have been helpful to me. But in the long run, I feel like we just had to get our hearts and minds ready. We did have one experience that was pretty mind blowing for me as far as the medical community. If you don’t mind I’ll go ahead and share that with you guys.
Okay so at about three months, you know, we had to go with the higher risk OBGYN and I actually had to do this with my first daughter too because I was you know.. What? Much older women. They call a geriatrics… My late thirties right?!
(Laughter) Yeah that’s encouraging.
And so we went in for the 3D scan and we had asked, you know when we called to make the appointment, we asked if we could see a counsellor first because they offer. Yeah we’d love to do that. We thought well that’s good. That’s great that they offer that. We in our mind we’re thinking we’re going to go in a room with them and they’re gonna talked about how we’re feeling and where we’re at and give us like resources. But what it was, was we went in and they went over the blood test and explained that it was a 96% chance that she had Down Syndrome. And she explained that they were gonna be looking at the fluid on the back of the neck as one of the dictators for whether or not she had Down Syndrome. It was all a very monotone conversation. In some ways kind of depressing to us as well. But then we were asked again and we wanted them to know how we felt. We were like okay we’re moving forward with that. And then the doctor came in and he knew from a conversation with our doctor previously that we wanted to keep our child. And he proceeded to tell me, you know, he wanted to explain some things that I should understand. He first said “What if you end up with a child with Down Syndrome that is functioning at the level of a 7 year old? It’s like you won the lottery and that’s really impressive for them. At the same time, unfortunately you have children with DS that are functioning at a much much lower level. And unfortunately many times so low on a level that they require institutionalism at a relatively younger age. An age where they are physically like large teenagers or adults. At that point it becomes much more difficult for their parents to take care of them.” And I just didn’t say a whole lot because what I was thinking wasn’t very nice. So I had already done a lot of research and I knew what he was telling me was not accurate but I also felt like I knew why he was saying that and where his heart stood on the matter. And so I was quiet. We kept talking and he goes on to say: “The issue is that if you go twenty years back where there were many many schools dedicated to children with Down Syndrome and there were many more programs. There is were a lot more available for families that have a child with Down Syndrome. And I know this because I have a very good friend who adopted a child with Down Syndrome. So this is based on my own reading and also you know being closely involved with the family with a child with DS. The schools now that have children with special needs are more geared towards Autism. It has basically become a mixture of many different things which makes it very difficult to really get a program, an individual program, that fits a certain type of issue better. I have multiple patients who have children with DS.” And goes on and on. I’m thinking there are more programs for children with Down Syndrome today than there have ever been. So why is he saying this to me?
Did you ask him?
I was again very quiet. I didn’t feel like I was being very articulate at that moment. Mommy Hulk was in me, trying to get out. I let him just keep going on. I had also really researched nutrition and I wanted to run some of those things by him and he answered those in a way that are not accurate. And a lot of times when I would tell people that story the first question was “Well, how old was the doctor?”. He was just a little older than me. He’s a high risk OBGYN and he’s very familiar with the actual data. So the fact that he was telling me this information that I knew to be inaccurate. And then afterwards they said we just wanna make sure that you have the information you need and then reiterated that my doctors said we’re gonna to keep the child and I said “Yes.” and they said “Well that’s wonderful we’ll support you with anything you choose.” and I was like sure. So that took me back quite a bit. We didn’t go back to see that high risk OBGYN of course but I thought gosh, that experience. If you are already scared if you’re already you’re alone in this maybe you have a partner who doesn’t agree with you on what the outcome should be, to go into a room and be so vulnerable like that and think you’re speaking to a medical professional who would of course not give you misinformation. It really was so sad.
Well when the medical profession becomes a tipping point one way or the other especially when it’s such a grave tipping point where they’re pushing you to possibly terminate this pregnancy. Even after you’ve stated that it isn’t an option. It’s a bit frustrating. And you talk about that you were really happy about some things you heard… I think it’s good to talk about that and to express that. Because that’s what we want. We want these positive things said to us at these moments and if we keep talking about them and put them out there, I think people in the profession will start to regurgitate these things. Just like this early-40’s doctor is regurgitating things he’s heard from older doctors. And obviously data that’s not accurate.
I feel like where the injustice is, is that you’re a mom. A new mom. Who’s pregnant, in the early stages of a pregnancy where we know the impact that stress has on you and your body. And everything that you are going through just being pregnant. As a woman, being pregnant and to have someone not only give you this information that’s false. First of all, it’s wrong and I am gonna say it’s wrong. And moms should know and parents should know that they are wrong. What they’re doing is they’re taking information that’s based upon what they’ve seen because of the way that people with Down Syndrome have been treated historically. People with Down Syndrome have been treated historically… babies were taken away from their mother or their mother was told this baby needed to be institutionalized and very few mothers new to fight that because that was a doctor telling them. Then these babies were institutionalized given nothing. There was no input. If you do that to any human being, if you take any baby and you pull away all the love and all the nurturing and a healthy diet and someone who believes in you and kind words and support and you put them in an institution, you’re not gonna see much difference between a neurotypical child and someone with Down Syndrome. I really believe that. That’s what happens in that environment. And so they’re taking what they’ve seen and they’re saying it as fact. I think that’s what we fight against and I think that’s what I want moms to know. That just because it’s a doctor and they have a white coat… that’s not the last word. You have the last word. Because you have the input in your child’s life. I know that after the fact when Liam was born our counselor came in to talk to us. She said to me… now this is my child in the NICU fighting for his life. She said “You do know that there was a test you could have taken right?” I’m like, excuse me I don’t really like what you’re saying right now.
You mean the little boy that’s right in this crib next to you?
You know he can hear you. That’s really wrong. And I just remember, I go excuse me and she repeated it and I said you know I don’t like where I think you’re going right now so I’m gonna ask you to stop. I’m glad I did that because she probably doesn’t get stopped. I would want to ask you right now because maybe there’s a mom that is pregnant right now listening to this. Or someone who just found out and you know it’s it’s good news. It’s a challenge but every pregnancy is challenging. Every human life is a challenge. Every child that’s born is a challenge. Everybody has their challenges. I know that can sound naive because I understand some of the health risks and things that come along with Down Syndrome. I get those, but to put those at the forefront. Which I feel like the medical community does. They put the chances of that to the forefront and they put those on parents who just wanna celebrate their child. That’s why I think it’s wrong. Because whatever challenge will happen those are challenges, right? And to just negate all the goodness is wrong. In life it’s the goodness that really balances off every life. Every life that we have, that’s what gives us the perspective. That’s what gives us the strength to get through and so… is there anything that… because our podcast is If We Knew Then, is there anything that you would do differently in talking to that doctor now. If you could go back and you’re like, if you could jump in with Marty McFly and get in there, is there anything that you would do differently when that doctor was talking to you?
Well I think that if I knew he was going to say that ,right after he said it, I’d say: “Okay just so you know, I’m gonna post up this audio online”. (Laughter) I’ve shared that information with other therapists and I want them to know. I shared it with my doctor and my pediatrician and the OBGYN. I’m pretty sure my pediatrician called him. She was pretty upset and wrote down his information. I was told by some of them that this is a good opportunity for us to educate. And the kinder part of me wants to believe that. Yes, educating would really help but I honestly believe he knew what he was saying was not true. I don’t think it’s a matter of educating this particular individual. I’m sure that’s true with many people, that it is just a matter of not having the right information. However with this individual, I am almost certain that there is some sense from them that this life should not exists. And as hard as it is to hear, there are people who believe in some sense of a more pure bloodline. On one level or another. And it was pretty clear to me. Not just what he was saying but in his body language. And then the look he was giving me. That is what he really feels. So that’s probably what I would do because I feel like he needs to be stopped from doing this to other women.
Well he needs to take personal responsibility. You can’t just rattle off these things and do your damage. There’s a sense of personal responsibility that needs to be there, to where people go… yeah it is my opinion but you don’t get to spout that as if it’s truth. So right off the bat you became an advocate for your daughter. Right in embryo. You were already starting to dig into that. You’re going to be an advocate.
Definitely, I mean if anything it really just did make me dig in more right then. I had always been of the view point even before these conversations I might have with other people that you know,, so like look, Einstein had at least 40 IQ points on me and yet many others have much more than that and then Olympic athletes can do things that I cannot do with my body but I don’t feel like they have the right to tell me that I can’t live a quality of life, and that I don’t have value to contribute to the world, So how any of us can say that somebody else who may not have the same capabilities in one area or another. I just feel like sometimes it feels like our culture as a whole can value the ability to earn a paycheck over the capacity to love. And I knew my child was going to have a capacity to love. And for me that’s the most important thing, you know. What’s most important to me is that when my children are older that they’re kind to people. They are loving people and that they’re spreading more love to the world. That’s what I see as a successful person. Are you happy? And I know you’re happy if you’re loving. What I don’t want my child to grow up to be is a jerk. That’s the most important thing. And so I really feel that way and when we hear talk like that maybe tI’m going to have lots of interesting conversations throughout from friends. I need to be prepared for the next one.
I feel like the same blood runs through our veins Julie because that’s what… are the things that I’ve always… That’s been at the bane of my existence. I mean when I finished college I continued to learn and I have the door open. Like I can learn. I get to learn for the rest of my life so why are we putting this limit of like well they only have until this age and that’s as long as they get to learn. And this is where they’re going to be. And first of all I don’t like the “they”. When the doctors and the educator start their sentence off with “they”, they are no longer just talking about my son. And they’re dealing with things that aren’t facts. And one thing that did strike because when you’re telling this I hear myself too. You automatically made it okay and you made it understanding for him. For what he did. There was a lot of like I understand this and as a mom I know that was my ‘go to’. Is to kind of make everything okay for everybody and then I went through why am I making this okay for everybody and why do I have to make it okay and that naturally progressed into an anger phase of “Why do I have to make this okay? Why do I have to make these statements that are inappropriate okay?” Honestly these statements for the most part are coming from a place of people just trying their best. It’s okay to to meet them with kindness and to say…there’s no way to get rid of that through anger. It goes back to Martin Luther King, Jr. is ‘The only way to get rid of darkness is with light’. Coming from that loving place, of this person just doesn’t know and so okay this is what I’m gonna do. And they’re slow changes happening. I feel like where we are now, Liam is 10, it’s so much of a different world than when Liam was born. I really think that there is more information out there that’s factual. And my husband has been sharing this video. I don’t know if you’ve seen it on social media but there is this gentleman with Down Syndrome and he is playing the guitar so beautifully.
A classical guitar.
Yes, and the hand work! And the first thing I think when I see the hand work is well the low tone, you know. We go through all of these things that people have told us that our kids won’t do because of this reason or that reason. And I look at that video and I’m like wow! So we’re actually telling Liam: “Have you seen this young man playing the guitar, Liam?”.
We wanted him to turn.. he had the headsets on and he gave me the headset to turn off, and I was like “No! Come on you can turn that off!”. We’re not doing this for him.
By the way we know you can play classical guitar, we know you can play the guitar we know that you can do anything that you set your mind to and that’s the truth about our children that’s the truth about any child. They get to choose who they become we don’t tell them who they become. I can tell Sophia night and day but she will become who she chooses to become. The same is equal with Liam. It’s not so cut and dry as they would lead us to believe and I think that is what I want parents to know. Every life, every life is complex and it’s filled with these abs and flows. The good and the bad and the indifferent. No 1 fact determines a value of someone’s life and neither does 1 chromosome. I think that is what I wish I knew then, is that Liam is gonna become who he chooses to become and that chromosome is a part of the variable but it is not his totality. He will choose who he becomes.
I agree I think that’s something I wish I had known then as well. So Julie before we let you go, is there anything you want to add? Maybe share something about Elyes’s birth maybe.
Yeah, I think that as far as our birth story you know. During the pregnancy, even though we don’t worry through most of it there were definitely moments and there are moments of crying or moments of being afraid. And then you know when we went to the hospital you know. When I was starting to have you know contractions and they were monitoring her… we had one nurse say to us. I can’t remember if she was talking to someone else or she was talking to me it was kind of a shocking moment. She said something like: “Her doctor doesn’t even think the baby actually has Down Syndrome, so with that is something that we don’t have to worry about.” And Aaron and I were just kind of like any would she say that? She didn’t you know ever have health issues but so I think that maybe my doctor.. he never said that to me but perhaps he said that to the nurse. But we were like that was a strange moment for us. Because then you kind of go, you feel that little like, “Well maybe”… and then you’re like but why am I getting excited? Like we’ve already decided that we’re okay with this and let’s just not worry about this. But you know you’re human and you have these up and then down emotions and so then when we went through the the whole birthing experience where you know with my first daughter I thought I was gonna do it natural until back labor started and I started screaming “pumpernickel” which with my safety word this time around. (Laughter) I wanted to wait for it to be painful enough that I don’t feel the epidural but I’m not gonna let it get that far so I went ahead and got the epidural and we ended up you know having her and then they laid her next to me and we both looked at her and without having to even say a word to each other… Aaron and I both knew she had Down Syndrome. We could tell. But we also, there was such a peace about it for us. Because we had known this, we’ve been able to prepare for it whatever, but there is a real peace and just kind of this bonding moment and it was really. What was beautiful about it is we knew in that moment even if there was any doubt lingering in us, that we loved her just as much is this she had it. She was no different. She just was.
That’s beautiful. Thank you so much. I know we need to have you back on another episode and thank you.
Thank you. I really appreciate it and I learned a lot from you guys.
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