Hello and welcome to the If We Knew Then Podcast, I’m Lori Saux and I’m Stephen Saux and so it’s funny that we can… one thing I have to start off with is how fortunate I am to have such a great partner on this journey
Thank you. Is it because we’re just setting up?
We were setting up the equipment and he wants me to have the good mic and headphone so I can hear myself and we spent a lot of time. I’m very fortunate taking care of each other and that’s very that’s important it’s hard to do it’s not a concern always something sometimes we have to remind each other but it’s so important to have that support and I I really hope everybody out there has has support from somewhere someone that they can talk to someone that they can confide in like honestly truly confide in the real feelings not the feelings that we create in our lives or you strive for but that that the hard ones that the hard times the hard I thought stuff that challenges because you know we work really hard to overcome a lot of daily challenges like everyone in life and it’s really important to have someone to talk to and I think for me why that’s important is because there’s some like other challenges I spend a lot of energy making things okay for other people one thing I was thinking about when I was thinking about this podcast about preparing for IEPs is house sometimes when we’re preparing for IEPs we encounter a lot of behavior and a lot of words and a lot of actions that are hurtful towards us and we make it okay we rise above it or we find a way around it because honestly this journey doesn’t incorporate too much extra time to and indulge when people are not being kinder he’s writing inappropriate and wrong things about your child and that you then have to defend soda I that’s I just wanna start with saying how how fortunate I feel to a to have such a a great support on this journey and I hope that we can provide that kind of support to anybody out there who’s on the same path as we are the same journey as we are and has questions or you know this this particular time is about a prep for the IEP and maybe how we do it different how we do it differently now than when we first started so if we knew then let’s say ditto on the on the case of support we’re coming from perspective of of parents that are together in the same household but that support could be another family member or friend and the group a support group group and like we said the password not really village people we don’t need a village we we keep the village in our in our home but there’s a lot of support groups out there is a lot of people that feel more comfortable with with that I wouldn’t say we’re not village people I would say that we had a reluctancy and we have a two at and also at the time like when it comes down to the end of the day we we have each other and we work in after all is said and done you know it’s bedtime so there’s not extra time for village but I would say that we have an extended village that we’ve maybe more recently definitely not at the beginning of an extended village of people that you know it’s it’s our village it’s but it is people we talked to it is it’s maybe not consistent or anything with that a form to it but it happens and we can talk and we can confide and we can help and we can be helped so IEP are they fine I bring food bring we bring food and coffee I would bring food and coffee because that’s who we are and honestly they can run long and we like to have fun making decisions about our child’s educational supports not be hangry if if there’s a lot of food and coffee that you in particular like yourself for you because you take it for you okay so I would say just touching base on our first experiences with IEPs and our prep when we first started them we didn’t know much any information we got was maybe from our service providers or the the teachers at the preschool and went to and then different people here and there we start hands maybe parents we found a lawyer very early on we found a lawyer and I think we wrestled with that because I think we wrestled with wanting to be nice people I think I think and I’ve heard this from other parents like I just don’t wanna be forceful or meaner or a you know could come across as it’s a chat a challenging people or argumentative but the the truth is they know their rights and they know the laws and and less you know all the laws and your rights and your rights it’s may I have to say I will I will never go into an IEP again without a lawyer or an advocate but a lawyer someone who who knows the law and can kind of it can cut to the chase and can eliminate those things that happen and we’ve had it happen a lot where your civil rights are violated where they’ll say and do things whether they know it or not that is a direct violation of your child’s right to an attorney can say things that could be more blunt and it’s not using them no it’s just not a lot with that it’s nothing personal and it is nothing personal never is I we really learn yeah I learned it’s not personal I am one IEP out of you know a docket where they have maybe a schedule of two hundred I. P. sitting here I’m one and it’s their job the administration you sit down with it in your IEP team it’s their job and their job is not personal nope they can give services take services away and not even bat an eye and I think of what I try to remember is everybody’s doing their best so what I always tell people is don’t be emotional and Liam is now nine and this is our sixth or seventh IEP and I think I felt after after the seven IEPs I feel like I’ve finally reached a place where it I can go and non emotional I can I feel uncomfortable that’s a new thing and I really that’s part of the past year last night last year they kind of pulled the rug ogle yeah we had a little and I cried in the car so that’s the most we’ve got a little relaxed where it’s this is a good point for Tomah lawyers we went into the site saying well maybe we don’t need our attorney maybe we have that where we’ve got everything in place what could change well I think in combination of our ignorance and also possibly the fact that we did not have an attorney present it may have opened the door to some things comment well definitely being thrown on us and we had to go into mediation and and and hire a lawyer at that point but we can’t talk about what happened mediation because we’re known about going end but what led us to going into mediation is that they said were taking him off curriculum and net there’s assessments that need to be done for there’s a lot of things that need to be done in order for someone to tell you what they’re going to do and it definitely felt like a blatant disregard for my rights not only myself my son civil rights but and a right to an education but also my rights as a parent like I was told this is what we’re gonna do and if you don’t like it you know you can file due process and it wasn’t a discussion and it didn’t feel like a team and it it was a really horrible experience that I guess we could talk about it some time but just to help educate people but that the truth is we had a lawyer there them we would they would have known the law and they would have said right away you can’t just do that we have we would have felt as alone as much as we did and having a lawyer there doesn’t mean that you you’d get to not know your rights and not be prepared you still have to prepare yourself to read all the reports you still have to you you have to make sure that you’re going in there knowing what you want for your child as educated about the process and educate about what you want exactly so what we do now is we know and then this is also with a lawyer but we also know that we we were Christ all reports all assessments five days at least five days before the IP this year we requested service records because there was a lot of inconsistency with me because I had a teacher strike this year and early on just due to communication I found out that the his supports weren’t supported him that she was doing assessments and create a baseline which is you know seven weeks of Liam support that he he doesn’t get support but he still held to that standard and responsibility to learn the information so I requested service records which you can do it anytime it doesn’t have to be just for an IEP you could say I want to see and and it may be perfect but then you just know and part of them knowing that you’re going to ask for things that hold them accountable will help them to be more accountable but so does the things that we ask for and then we ask a lawyer what else to a for it to be honest to be absolutely honest I you have to have a lawyer that you can talk to and say what else do we need we also like to have maybe some goals kind of formed right we’d also requested a draft of the goals which you can request those so that you are better prepared to go into the IEPs that’s why you request them drills sometimes feel like is seem like another language to me a goal could be X amount of minutes at a certain percentage of forty five trials here seventy five percent of times kind of words can be difficult to comprehend and say well what’s a typical could do or what we have can my son or daughter do this in which case will they be able to do it later on so that’s where an attorney can help you to focus on where the goal should be and also to understand and you know the truth even if you don’t understand what they’re saying completely you can write down what you don’t understand and say I always think of the time payment after reading the yeah right down if I ride to go what does this mean seventy five percent of the time out of four to five trials with little prompting what what does that mean and write a little note what does that mean and your IEPsay what does that mean I was think of Philadelphia were done that Washington would say talk to me like I’m what a six year old six years old so talk to me like I’m a five year old so you can ask that because it’s so important and don’t be afraid to ask I think that’s one thing I do differently now I’m not afraid to ask because I don’t know because I’m a parent I’m not a lawyer I am not a school administrator I’m not a service provider so tell me what you mean by that tell me so I can understand so when you ask for those reports you read him one it’s not brand new you’re not hearing it for the first time the IEPs you can ask questions so you understand it better and three sometimes they write horrible things about your child that I just make you wanna cry that the perception that they paint of your child so get that out of the way so you can go into the IEP and go all right this is what you guys see and you said that my child doesn’t respond to other kids and can’t memorize things like songs or days of the week and then you pull out your video of your child singing a song that he’s memorized or a letter from a friend that says I’m friends with lamb and I’ve been friends with lamb since first grade and and you you’re prepared to say you know what you’re wrong and then honestly and the areas that they’re right you can look at it and go you know what they’re right but it’s not the first time you’re reading it and you can also sometimes they’ll say things add the things that are hurtful and wrong I prepare and I say okay this this is where you’re wrong here’s Liam rating hassling I’m tracking here Sam speaking Harris lamb singing and the thing over there right I’ll say you know what you’re right how do we support him to face that challenge what we gonna do because I know he can achieve that goal what do we do to change what you’re saying what where he is now because he has grown he has learned he’s continually growing and if he has the right supports this is what he’s going to do and the things that you say oh I don’t know if I’ll ever do that you can honestly embrace that and go what what in the moment as important and how can we support him and what is the actual goal and the thing is you’re prepared so unlike our experience last year you’re prepared for where ever they are thinking to go and but hopefully you hope you have a team yeah and that’s a good time to to bring up all this because all the team is supposed to be there right everything is represented every service is represented that represented the administration’s represented your there’s representation for him so you need to be or her and so you need a year your child advocate and don’t worry about the time all these things you’re you’re talking about asking questions putting input showing a video of this hand up letter from a child our pediatrician or what it what have you this is all your time that we’ve had some marathon IP is where we’ll have a recess after one day of four five six five hours I guess with the launch and that’s really why we bring food yeah and then we’ll have they needed teachers do need take a lunch so there will be a break but I know some IEPs get done before lunch well ours usually carry over and we have a second day because we want everything to be flushed out I want to know what’s going on and you this is a one time you’re meeting and they were crystal clear hopefully on what IEP as which is a a legal binding of a piece of paper that that you’re gonna be referencing to all year and and in the future when you’re building the next IP now everything that we’ve talked about so far is any I. E. P. but the truth that I experienced is that sometimes people don’t know how to teach children with down syndrome it’s it’s different than ADHD it’s different than autism it’s different than a dyslexia but this is where we as parents support our children and instead of going in so angry that they don’t know how to support my child I can say look this is what we do and this is what works for us and remind them that it is it’s different it’s different everybody learns differently I learned differently than my husband we look at ways when we’re driving and I need the written directions and he looks at the map our brains just work differently every human learns differently but you can stay okay well this is what we do and this is what he needs because on his parent and maybe you don’t know much about down syndrome but I have some knowledge and I can help you to support him and I can help you to understand and I think being able to approach what feels like hostility and hopefully you don’t get that hopefully your IEPs everybody’s like Hey we’re on board and let’s see how we can support but if you do expedite spend our experience well you know what can happen sometimes is schools can be a bit cookie cutter sell even with typical kids well when you have a child that needs extra supports sometimes these these supports are just cut from the genetic their generic they’re they’re from the past which is always changing and and gladly for down syndrome education but which I think is new it’s fairly new yes I think the last decade or so there’s been more opportunities for children with down syndrome to education not just this like is that cookie cutter way of doing it so well first he goes here she and then we put in there and we did this summer and it feels out of control sometimes when everyone else on your team especially the professionals maybe thinking one way and you’re saying well that seems a bit old school seems a bit founded in that history that maybe fifty years ago if your child is born with down syndrome they were institutionalized yes and there wasn’t a education provided or if it was it was very rare that people actually took the time to to educate so when you’re trying to Buck that system you could have some resistance and I think you can learn new ways but I believe the professionals that I’ve been doing it can learn new ways to new better ways what should always be evolving today someone S. said some really great words that I was just like oh I love this this is going to resonate and me and it was notice how you feel when something gets uncomfortable and there’s a difference between discomfort and pain pain we back away from we do something different we walk away pain but it’s okay to be uncomfortable that’s where change occurs so when you’re in a situation where you’re uncomfortable maybe it’s reading reports where someone really paints a horrible picture of your child or listening in as they’re proposing of a goal that is below what your child could do or trying to put him on a different track that you don’t agree with obviously your track of what you you’re doing for your child that is your choice so whether it be whatever your choices are that they are your choices and it’s okay if it’s uncomfortable to sit and say no it’s okay to be uncomfortable when you’re advocating for your child’s rights because it doesn’t it doesn’t necessary always feel good it feels challenging but it’s okay to be to have that discomfort because it if you can sit there and feel your feelings and know that you get to choose how you respond that that’s where you’re gonna make a change and I and I as soon as he said I’m like these words and bring an end to the I. P. when they when they tell me we’re gonna push for land to be off curriculum we’re gonna push him into a special day class we’re going to you know everything that they’re going to say that they’re going to do I can hear those words I can not like those words and it can be uncomfortable and then I can choose how I’m going to respond and I hope that helps I really hope those words help a resident somewhere in you because because they they really did and that’s just where I am now it took me a long time it took me a lot of work a lot of work to get here it can be very uncomfortable it can be very nerve wracking anxieties there even after you wanna stay for you in your mind you want to stay friends of people you want to have a good report with people and sometimes people don’t treat you the way you should have it you think you should have been treated are they rub you wrong in and they can change things and that’s that’s okay too you’re not going to get along with everyone else the the the point is that your child is going to school and is having relationships that in no way will be affected by anything that happens in this meeting he will no way be affected in a negative way through relationships not agree with the teacher or the principal or a therapist and there’s a little rough edges there it shouldn’t reflect in the child’s experience at school and I would also say though when I’m talking about being uncomfortable I don’t want it to react in a way that’s not beneficial to my child and the support that he receives I want to be able to go all right there it is yeah I feel that what do I feel that because it’s wrong okay so we’re gonna look at it and what we gonna do are we gonna just be mad because mad does squat anger does squat but what you can go and say you know what they’re wrong look at his homework from last night they’re wrong I was reading a book I said where is the noun and he said elephant so then I can take that and take a deep breath and then I say alright well here this is the work that I have to do and I’m gonna do this work and that’s gonna be my choice because I’m going to show them because they don’t know and honestly your kids are kids act different and that’s Liam and Sophia at home and at school it’s IEPs so we can show them how well that works at home yes this is this is what he does this is how he acts and this is this is the reality and combined together create a system that supports him at your by your day by day but staying in the moment what’s here create a feasible system and build on things and and focus on what’s important right now in this moment I believe in his potential or her potential exactly not don’t put any barriers up not these archaic beliefs about anyone I always use the elephant I always use the elephant analogy that if you take an elephant and you bind him with a two foot long chained for long enough that you can take that chain off and then he will remain within that two foot perimeter and that’s that’s the truth with any human being I believe that once you get someone to believe what their limits are it’s really hard to break that so the thing is in the moment what is the reality what what is what is our possibility here what can we do to change this what can we do to support this moment this reality this child their abilities not what you believe from what you’ve seen on TV and what your folks used to say the students in the past have done exam mind right this this podcast is about IEP prep what what I would say is round yourself and take deep breaths as you go into it ask for everything that you need in writing timestamped escort if they don’t give it to you write another letter because honestly then if you have to go to due process you have a record of the times that you’ve asked for things that you didn’t get that you needed if you can’t have a lawyer an advocate or somebody who knows but I reach out and try to find somebody to sit with you at that table I do recommend a lawyer because they know the law and no allow yourself that’s what I always say is no joke about that if we had a friend who is an actor he could just or she could just show up with us and in a suit and say they’re an attorney and it would change things yeah I mean when I was in there we’ve yeah you know just have a someone else there I mean of course it’s nice to have someone that is educating a lot but just having someone else in the room that’s on your side on your side helps a lot Iraq might be an advocate so that would be actually might not cost anything get up get the reports and read him the assessments and Reedham educate yourself take notes what do you see a if there’s things where there’s an inconsistency in what they’re saying recorded recorded on your iPhone or your Samsung or record it and bring it in and show him you’re wrong and that could be that because for the twenty minutes they see your child every week this is what your child shows them and you can’t fault that there’s a lot of people that they’re supporting so try to always remember that too that’s what I would change I think I changed my attitude because I could have I I’ve been fiery and defensive in the past and it made me so mad that people make extra work for parents that don’t need extra work no parent needs extra work let’s face it but if you’re dealing with if you’re dealing with trying to get the support for your child so he can access or she can access the curriculum so they can be educated why cause unnecessary stress to me if I would be so frustrated why make it about stuff that really doesn’t matter why aren’t you supporting my child and honestly those things can make you mad and happy mad then let that go and dig in and find a spot to come from that actually helps your costs and it also helps your spirit it helps you it helps how you feel to go in there just to be able to breathe and to it to have everything that you need everything’s been read all your notes have been taken what you want what your questions are you have a lawyer by your side and you go in there and then this is this is it it’s not about anything else because it should be about anything else I come from a place where you’re not emotional and non reactionary but stay focused on how they’re going to support your child I know that you represent your child in Antarctica right if I knew then what I know now I would definitely ground myself I would definitely put the emotion to the side I would read through everything and I and I would let the anger and all the other emotions that don’t serve it up including fear and security and all those things are not wanting to hurt people’s feelings I would know that I’m one out of hundreds of eyepiece that they do every year and my job is to advocate for my child and if it’s something that goes against your your rights or something that you believe in then you go to due process you you follow don’t be afraid to follow the necessary steps that are put in mine and then as you prepare to the same kind of preparation but don’t be afraid that you can hurt someone’s feelings by saying you’re wrong this is what my child needs and it’s you know you choose your battles and then enjoy every other moment because I know it’s stressful walk out of there take a take take your time to transition and then get back into all the Yummy goodness that’s your life that is something that they can’t change at the IEP they can challenge you they can try to limit your child but they cannot change all the goodness yes all right well thank you for joining us yeah we’ll see you next time.
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