Hello and welcome to the if we knew then podcast I’m Stephen Saux and I’m Lori Saux and this episode is about all that annual stuff. IEPs and assessments that have to be taken care of each year. We thought we’d start by talking about what we would have liked to have known the. Whether when we first started on this journey or five years ago or three years ago or last week. Well if I knew then nine years ago, Liam’s gonna be nine in two days and so this is his birthday week and we’ve been kind of going over the ritual of nine years ago today you woke up with a headache years ago today it will check your blood pressure and we I was supposed to get a hair cut went to the doctor’s office and then yeah Hey about this time nine years ago we were we got the medicine and you were really cold and I was really hot. Yes Liam was born two and a half months early so we had a little surprise there and he’s due date was in end of April. And we were supposed to pick the due date is going to be at a caesarean having trouble choosing what day he would be born remember yeah we had no choice Liam as well as all babies do and when they come so when he what he does right early and so we weren’t really prepared for that and then when we get the the diagnosis ten days later though ten days later we will do our prayer for that either and and even though we had some high risk tests saying that we know we didn’t go as far as the same definite only to telling via though yeah we did we had Dickel child yes with our eleven oral we had similar tests so but it wasn’t really going to matter to us one with the other with with the pregnancy so we decided that we would just go with it and it kind of took a backseat at first because Liam was so early we were concerned with his health surviving yes but it it was impactful and if I could go back and tell myself something or if I knew then what I know now first on the what what would you what would you discuss first just the down syndrome like are you talking about ten days later we hope the diagnosis or I was focusing on the down sister sundown center yeah okay I mean this isn’t a preemie podcast so where the weather I would say bring an umbrella right right it was rainy but down syndrome wise I would tell myself not to worry that’s easy to say and I worry all the time but %HESITATION I worried a lot I was concerned that I didn’t have the boy that I thought I was going to have a child I wasn’t sure if I was going to be able to throw the ball with William and how much of that actually came from what you believed or what people told you well I think everything has to do with both of those things what what I believed was my experiences which were minimal so what people told me %HESITATION without words really what I was told without words was that this was this was this was not good news %HESITATION and the not words where all the tasks and doctors and people it was always a concern you know there was a downturn in a major major concern in prenatal testing so with all the the testing it’s just a conclusion that you can have that we would be testing for this that this was not a good thing yes and that was our our the the reason why I left my OBGYN was because she said well this is so we can be prepared we remember her yeah there need to know was more than are needed now but also the shit I was led to believe that we need to be we need to be prepared for this and I don’t want anything with a pair you yes but I understand yeah he did not we do not deal with the health issues that some people absolutely do you deal with and so maybe that’s a preparedness that people would want but I don’t think that a baby born with down syndrome I don’t think you need to and I don’t know man I I’m I’m actually I’m not educated on this I don’t know if you need a team of heart surgeons and stuff I think you would have found that though in the in the embryo with in the womb with other tests besides downstream does I think you would have found that there was a sergeant or it would have happened and I don’t think they would have prepared a team because he has down syndrome and we would have but appeared for the physical or health possible health problems so but all these test leads your psyche to believe that this is not a really not a good thing so I was devastated I I remember a main thing was the throwing the ball thing it’s really weird that I was like I got a great leaders yes was actually was on the floor with a farm team it’s not a question but I don’t know why that was important to me or or what I had envisioned would be %HESITATION %HESITATION criteria for for that I mean I could have a table kit to pull kid that wasn’t athletic I mean it wasn’t no but seriously %HESITATION you know the things that you concern yourself about %HESITATION I just kind of what you’re what you’re projecting your mind to be what you want your child to be in the you don’t know that with any of your children and you don’t you don’t know really what you are gonna have as an experience until it’s happening so I think there’s a leisure though with the typical child or people say don’t compare your children don’t do this your child is all of these possibilities are there when it’s a typical birth a typical typical child I think there’s a possibility I think that what we experienced at ten days old although Liam had banned in the Nick you for ten days he had survived a lot of the initial challenges of beat just even being born and the impact of being born at thirty weeks right this true I mean it he was born early and he did not have %HESITATION he had gone through a lot of challenges then and with a diagnosis of down syndrome it seems like it could have compounded things it took away I think from the view of how well he was doing and his strength and change the view to adjusted does mall UP limits and sadness was what was given to us but yeah I would say going back to what we want to say is if I if we knew then what we know now I would say breeze in don’t listen to anybody honestly you can do your research and and be in your moments that are real and right before you because even with the challenges even with the things that are hard even with the health issues and those those you still want to be present for that and you have this lovely beautiful child and to have the gift to be present and to be able to focus on that beautiful life in I would I I think I would say the same thing like don’t miss don’t worry it can be hard to get perspective when it is so hard and I think that was it that it is like I I would want to offer some lightness some the same piece whether it be your second child if it’s your first I think if it’s your first child it’s a little bit challenging because you don’t know the experience from before but just to to have the joy of this new life and every life comes with worries and heaviness and just with the down syndrome it was written on a list of everything that we should worry about so I think that if I could I I think we did a good job actually of isolation to be honest but %HESITATION there was that weight and heaviness and worry at first we did a good job isolating us like we were together with Sophia and lamb and every day at the neck you almost split the chefs and I think the neck you gave us perspective that we might not have had if he wasn’t fighting for his life we might focus more on the diagnosis and what the challenges were but it was kind of like alright we’ll deal with that later what do we need to do day by day and I think that looking back that was a blessing because we were present in the moment and each milestone each accomplishment was celebrated member I remember being the elevator going up to the neck you and I had a cake or cookies or chocolatey Claire’s something and I think we celebrated I don’t know if we did weekly or daily but weekly and we did weekly and every week we would celebrate that was his one week per day in two weeks and I remember somebody in the elevators same like three weeks or twenty one did that’s not a birthday that’s not a celebration and I just I didn’t have to prove that person wrong it kind of broke my heart because a it is a celebration and at that point I think it hurt my heart because I was like I have to celebrate every moment now nine years later for other reasons I’m saying man celebrate every moment but honestly I can say in hindsight I mean there are there are few people who are I guess I don’t even know if there are few people who would save maybe there is one or two people who said hurtful things intentionally just to be Turkey’s but most people are just striving for a way to navigate the situation themselves and teach you know some people are going to come to you with all my best friend’s brother’s neighbor or I knew a kid growing up and sometimes at the very beginning those stories they kind they hurt or at their lake you don’t understand the point of them and I think the point is that people are trying to connect and the trying to comfort but they don’t know how and I think the real topic on that subject is just because there’s not knowledge and there is ignorance and there is this negative overall look and feeling about down syndrome I mean there is a picture that’s painted and there’s %HESITATION stir it tighter so that are replicated like negative for the parents and for the child almost like in a a bit of a pity way but not negative look for the goodness of the of the person with down syndrome you know that’s one thing down syndrome has is a happy positive air to it people are attracted sometime to for as much as there is a happy positive persona there’s also a limited yes negative marks yes boxing when the up like a part the second part of this topic today is about IT peas and it’s about you know lambs resource teacher at eight years old is concerned that he can’t say twenty four so when he catches the two forty eight bus he can say two hundred and forty eight there is that negative already thought of him take a bus down to work and my question is it a issue in your shoes she found him instead of yeah wondering you know when he sees it get a seventeen or eighteen years old twenty years old going to catch a bus by himself right now but she’s taken out of it the possibility of she’s driving in that stereotype and really when he’s eighteen he’s the cars are going to drive themselves so that’s good right yeah you know so I think what I hope I didn’t cut you off no at I think what he does is because of what it takes away I think it’s positive because you sent a negative feeling I think it’s negative four six what we’re gonna experience like that outside I don’t wanna hear when my son is is fighting for his life and that I have all this unknown those are such happy people that landed so hard on me because them and those I am I mean that’s the number one no no we’re emails talk was taken away like people go oh you you mourn the lost child that you thought you were gonna have is what I hear all the time and the people here this %HESITATION I don’t know what’s going to happen so when I feel I’m more and it was the feeling that now this child I had and my relationship with the child in our family dichotomy with the child was already automatically Stanton predestined right and there were these boundaries these re really tight tight hard walls that that because the tunnel when you look at it what his life is going to be and tunnels are dark and it’s a dark outlook to say is your child hears limitations from day ten before the diagnosis it was all about hoes limitless gonna survive and I mean I’m an easy rule things in I mean we’ve had forty five presidents how many people go eight might become president one day right that’s not that’s not so I was never told us those expectations even if press whatever we think residencies are good or bad but being a CEO of a company and there are people with down syndrome who are CEOs of their own company I get it but that’s a %HESITATION that’s not what we were nope not that I’m saying that there are now yeah I’m not fighting all I’m saying there’s not a limitation right but what’s presented to accident in nine years ago was this tunnel of limitations and there’s your path yeah that’s your path and you poor thing not you Hey your child was born ten weeks early and survived congratulations yeah you have a life that like every other life is without limit I completely acknowledge that down syndrome comes with some health issues that we didn’t experience we experienced some but not like the you know there are some other ones that we didn’t experience and even with that there you know there’s there was still that that to me was the the most important was his health that is honestly when I was pregnant that’s what I always prayed for a safe just and have a healthy baby let him be healthy %HESITATION I didn’t think about down syndrome I just wanted him healthy and always acknowledging that there are certain challenges that we didn’t have and always acknowledging that there’s no judgment on anything we don’t that’s that’s one thing there’s an even though there were no health issues right away with everybody forecast is cognitive delay and that reflects on intelligence which reflects in school and from day ten you’re now looking at what’s the school life going to be for the rest of his life and I would say if I knew then to just be open mmhm and don’t smile don’t smile no smile yes but don’t %HESITATION if you you don’t have to smile even you can you don’t have to listen to what anybody else forecasts for your child because the most impact that will be given to your child as you it and you have the ability to weave and that’s the second part of this is the I. P. in the education but we’ve been fighting to keep him on curriculum since he was I don’t know three years old we had to fight to keep him in a classroom at three years old we had we had to send them to preschool and we had to fight to not have it be a special day class and we had to fight to get him into a class with his peers and we had to fight and we continue to fight just to keep him on curriculum well that’s the dichotomy we’re talking right we’re talking %HESITATION birthday AP because it is a California school starts for a child with a disability at three so that they can and they and their services are provided through the school system right right so you prepare to have some services that you can get but it’s not really an education it was we had to fight to actually help them educated it was we want to put him in a special day class exactly in an appropriate defense setting and those settings are dictated by meetings you have with groups called IDPs at least and I believe that’s nationwide but so if I knew then I would say educate yourself on a ninety P. is hire a lawyer and fight for what you want now you might want something that you might want to silence decide what you want and then fight for that and honestly you might want a special day class and you might not want your child and curriculum yes that is your choice as a parent but it’s your choice but that to go back to the dichotomy right is because it starts at three right is a birth date yes that IP happens then and basically for the rest of school life you’re fighting I am trying to around bride to decide what kind of cake right around birthdays you’re trying maybe this week Liam picked angry birds cake this year maybe just picked up on everything now that’s one thing don’t be angry you know what but you can be angry I would say if I knew then feel all your emotions and then go forward because anger doesn’t change anything what changes things is education odd knowing your rights and standing for what you want and what’s has always frustrated me is that it’s exhausting sometimes it is to constantly be fighting and it shouldn’t be fight it should be a team it should be this child and how can we help him to be a difference to make a difference how can we break the stereotypes how can we educate this child how can we he learns differently how can we teach him differently to lift him up to access his curriculum so that he can show us who he’s going to be just like every other child going to be there that may be something that’s easier for a lot of people but the but in our experience and people I have talked to it’s hard it is to fight it’s an attorney for insanity I think that they have all the conversations that I have with different parents and not all parents with children with down syndrome but different disabilities is that it shouldn’t be a fight and there’s the frustration that it is a fight that you have to work so hard that people lie to you that they violate your civil rights that they put limits on your child and that you have to work so hard I would rather donate my money to the school to buy new computers than to spend the money I’ve spent on lawyers and even if you spend money on an attorney you you have to educate yourself as well because you know I have an interview with you in every aspect of this I mean just like how we decide and honestly today I wrapped presents for Liam’s birthday which was fine and going through all of the things that he loves and also had to pen a letter to the school because of their violations and how they took something that was supposed to be up a small task to implement something and tried to use just railroad you in a row it was it was all wrong as wrong as it was an appropriate sneaky it was sneaky it was deceitful it was a debit with on their agenda to take our son of curriculum so that was one day that was a one day I felt complete anger and frustration and on the same note I felt joy and celebration of my child when I told Liam we can’t command wrapping your birthday gifts and he was like all so excited he was excited right so I think that’s the dichotomy of this annual thing that you experience so fi if I knew then I would say keep it in perspective because I think what we discussed tonight was we have more say in his life than what the educators have six hours a day five days a week however many months a year we have to say we have the ability we have podcasts we have education we have so many things that by far surpass the public school system and and it’s unfortunate that we have to have that conversation but honestly the education that so family and get are not equal nor the opportunities and I think that needs to be addressed I would I hope that it’s not how it is everywhere our experience is definitely all we can speak from but their education opportunities are not equal the way they are seen as not equal and the public school system is supposed to be able to handle this able to handle some extra work with some of their students they should be prepared and legally they need to be prepared to support him to support people in the community %HESITATION and I would also say that you you know the truth is severe head a challenges with her education but she was a lot of the time and the leisure and not the pressure to find her way on her own and she still struggles with math and she’s in the sixth grade but she’s not threatened to lose her opportunity to have a diploma because she struggles in math it’s kind of like she’ll get it but like you told me earlier today before the podcast to keep it in perspective Liam’s going to learn what you learned in school and he’s gonna learn a lot at home to say so if it does and at the end of the day we want him to be treated fairly will we want him to be happy when he set up for success but what can really grieve you is the people that are supposed to be doing those things aren’t and are not capable of doing them I don’t even know if the neck at the choose not to they’re not capable to their own limitations I I don’t think they are prepared to do it it’s unfortunate that as a society we haven’t learned that instead of turning around after we’ve been put in a box instead of taking that experience and keeping people out of a box that the turn around is to put other people in boxes and I think that’s that’s unfortunate but in it take it in perspective my own personal perspective is I can get mad as hell I can scream I can think mean thoughts which isn’t really and my my make up it doesn’t make me feel good to feel that way it doesn’t make me feel good to feel the things that I feel towards the public school system towards the APIS at my son’s school towards %HESITATION the school district it shouldn’t be what you’re dealing with when you’re dealing with trying to educate your child who has a challenge or disability or whatever it is he just learns differently and if the effort is made we can find the way that to around it and to teach and to educate we’ve taught them to read them knows how to do math he knows how to spell we teach them how to write is writing has improved one hundred percent but instead of focusing on that it’s like a you know be so much easier if you just let us take them off curriculum and then to comment on our personal lives and tell us we’d be so much happier and less stressed which thing that would bring me less stress if they would just support my child so what’s something that you would say to someone with an upcoming IP I would say keep it in perspective eke out the time that you want to fully one hundred percent be present and whatever your goals of for that IPR get the support that you need up X. except that things might not go the way you want them to go ahead and there will be challenges and people are going to say mean things and do mean things and things that don’t make sense and things that are out of your control and there’s a feeling of helplessness that can come with an IP because you’re there and it should just be education but it’s so much more and that feeling of helplessness you’re not helpless because the truth is you have more of a say in your child’s life than they do and especially with technology especially with everything that’s out there you just know this you have an impact more than they just more than they do it I mean think about your education think about what you went through think about that teacher that said things and you’re just a I’m gonna listen to her but you’re still educated so you’ve you you find what was passionate for you you studied you became what you wanted to be there’s no there’s no difference whether child has down syndrome or doesn’t your child has those same opportunities right there and even more so now with technology with all the things that are out there so I would tell you %HESITATION you’re gonna be there be present be educated be aware read everything underlying question know what you want go in there with lists %HESITATION arm yourself with videos of of what your child can do do all of that stuff and at the end of the day be able to walk away and be able to still celebrate the life that is your child and don’t let whatever negativity and hard horrible things that happened in those meetings or the feelings that come up with that annual everything’s don’t let those seep into the celebration of your child and their life and the joy they bring and their abilities and who they are don’t be robbed of any of that you know celebrate justice as much or even more so it’s easy to say don’t fear and that would be something you could take in every aspect of your life typical or not it’s easy to say that but it’s true when you look back at the last nine years hi I see what were you afraid of once he lived what were you afraid of one aspect was I was afraid of not being a proper advocate for him we really to be his voice and so that’s very important and fear drives that sometimes knowing that he that I don’t want these years ago by and he wasn’t able to defend themselves in certain situations and and I didn’t I think so if you feel that sometimes too is a sister yeah %HESITATION that’s okay because that’s our battles I think we have to choose you to choose your battles but I think that’s when advocate for each other for all all members of our family so right that’s healthy I think I was also but I get that when you say you’re afraid that you didn’t advocate enough cause and at the end of the I. P. you’ve you fought and you’ve kept in mind curriculum but he still doesn’t have the support it needs and at some point you just have to like it you choose your battle and you fought and I think I do wrong I’ve always said %HESITATION Monday leaders like you just got out of a car dealership with your vehicle and you go I think I got a good deal and your and your driving off gone the salesman might be just chuckling right now as I drive on yeah mmhm you you never really know you know there’s some doubts there but you just do you do your best but yes I I believe that there is that that part of me did it but I don’t I don’t know that I do it I mean it’s really has charted as it is and how much there has been that set up where we are now %HESITATION so many laws and years of of children with disabilities especially down syndrome being put being put into institutions %HESITATION had the institutionalized institutional instruction from there too now that was just normal you got your baby and they said even though all that’s happened I mean that’s a big big fight there that we don’t have to deal with but that that’s that’s generations of people fighting to have that stop even though those past that Pat’s been clear for us and and there will be more past the clear you still wonder if you did enough and if you’ve really given your child all the opportunities and you can feel that with every tragical child’s wells it’s just things seem to be amplified with a child with a disability and I keep saying child disability although I think maybe most people will be listen this podcast will have expanded our search and but I think it crossed the board children with disabilities have similar our struggles and and and Harris could feel the same right the same intense microscopes Copic kind of a judgment that you can feel absolutely as a painter I think that occurs because the parents that I speak to for the most part I think we have a small community that way no other parents of children with down syndrome we have a bigger community of parents of children who have I. peace who have different challenges but whether it be autism or dyslexia or ADD or ADHD and I think and I think that the common thread and that is we all have the same feelings that you’re fighting in that you’re not being told the truth that they’re not forthright that you have to fight so hard for the support that they’re trying to put your child in a box and I think those are the common thread and although this this podcast is meant if I knew then and to put out there for we if we knew that we if we do that this put out there for parents of children on the same path as us I think a part of that passes and any any child and if any parent with any jackets actually any child because the truth is the difference between so family and is not that big and I think that that would be the other thing is if if we knew that if I knew then really if I look at both of my children it’s the same journey of guiding this life eng loving this person and giving them a foundation and taking care of them and providing for them that is at the core of it and we want to laugh with their children and we want to teach our children and we want to support our children and we want to give them tools for their life M. what what tools that we believe in and every family has different tools every family has different up things they believe in and and things that are important to them and and that I would tell you is that this child is your child and you are their parent and you have the power to influence their lives more than any of these externals %HESITATION preconceived judgments from others the school system and the limits that are are put on our children up you have the power you have the power to influence them to lift them to guide them and to fill their life’s yeah and our wishes that we’re there with you a little bit of the way to help to help you yeah to support you just to be there to have a shared commonality to you know to know that you’re not alone and it’s not crazy to believe and and wish for the man S. hand hits it’s that is not unreasonable I have I believe that we believe for great things and that should be no different just because our children have an extra chromosome it may change the challenges that we meet every day it may change or should I know it changes my strength I know it changed my compassion all those things that it changed to me we’re definitely for the best but these are our kids and we have that power and their life to lift them up and to open up that horizon and all that potential that is in them and support them just like we want to support you that’s right thank you for joining us thank you
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