Hello and welcome to the If We Knew Then Podcast. I’m Stephen Saux
and I’m Lori Saux
Happy New Year!
Yes happy new year and to quote the Jonas brothers now that we made it how complicated was last year?
Well we got through.
I think I think 2020 is definitely a year that will go to down historically as as as as as a challenge right it was unusual challenge for all of society and %HESITATION I think that there was a gift there because I think going through twenty twenty one of the things that made it bearable or durable was the fact that we were all in it together you know it wasn’t it wasn’t one of those situations where you have a challenge in your life for a loss in your life and then you have to function in the rest of the world by the rest of the world goes on this %HESITATION regulation where the the entire world was involved yeah they’re on the same page going to write you know going through it in different ways and handling it yet to the best of each individual’s ability yeah there’s probably come we went there together right you go through it together and you can support each other at least see how you can discuss it together instead of I know you’re saying in the same pot thank you that you’re not you regardless of how it feels or is handled or your belief or anything you’re still going through the same experience together so there is a bit of connection and community and I think with the enormity of the challenges that’s what made them do a book no I agree because we’re all feeling that same stress raw feeling that same pressure of being quarantined or isolation or health and and there’s there’s so many thing it’s just common so what do we know we know where everybody’s going where where everybody’s coming from yeah it’s a really a great reminder of the importance of community and how we can support each other really and I encourage everyone that if you need support to reach out to have that conversation whether it be that you just need to talk to someone or if there’s something you need a meal you need a guidance you judge whatever you need I think the importance is ask for the support yes I mean how much further we can get if we share resources and right and help each other and then if you’re able to support someone and you see somebody or you %HESITATION you see that somebody needs assistance or even on one of the even through social media you see that someone just needs guidance to offer that word of encouragement goes a really long way the the here just to be there to listen to let someone talk about whatever they need to talk about those those are ways that you can you can support your community your friends your family you know there are ways that we can support each other so if you if if you can support without a message or a meal or just being there to listen to someone and then if you need support to be able to reach out and ask for that support because one thing that is so apparent to is as a human race we love each other at the core and we want to connect and we want to be there to see to support each other and sometimes telling his story is something that people can relate to if they need guidance they can use your story as an example of of maybe what to do or not to do I guess just the experiences we’ve had and having the down syndrome community around us kind of made last year manageable an inmate at where we could understand that there are struggling capable challenges yeah right yeah because what we’ve what we’ve experienced you know just with some of our daily challenges just fighting for an education %HESITATION Liam’s placement in the school or medical issues or even inclusion in general I think that when these big insurmountable challenges came up this year it didn’t make them less frightening but when we’ve gone up against big challenges before and so I think that gave me a comfort of okay I don’t know what it is and I don’t know how but I know we will yeah well maybe this community’s battle tested a bit right I mean for that’s one positive way of looking right now actually I have so much gratitude for what’s made me me the rough edges that I’ve had to brush up against just in life in general and I think that that gratitude is deepens because you know we’ve talked about when Liam was born and he was in the Nick you and we’ve talked about how that gave us a perspective that he was fighting for his life so when we got a diagnosis there was a perspective there that we shifted from the I think that the normal fears that we that we may have really been overwhelmed by too just the focus so we we want our child to survive we want him to live and I think that that gratitude took place then that perspective really implanted itself in our journey and so when twenty twenty came around and you know it I remember last March we had there the Quinn the quarantine first hit and I went and bought some Reese’s peanut butter because I thought it would be a fun little treat for the two weeks that were in quarantine right we were thinking it was going to be just a by some fun snacks thing with me just a couple weeks and we’ve been in that place before and and let fear take over to some point here and seen what that is and and I’ve learned from that experience but I think because we’ve had that whole experience that last March when this first started there was a bit of perspective there is that we’re just gonna take it day by day step by step that made it manageable like you said definitely made it manageable and as Bernay brown’s or just watching this great special with Pranay Browning how wonderful Ted talk if you haven’t heard since I liked her Ted talk is about vulnerability and I feel like yeah that’s kind of what this whole journey has really brought to the forefront in my life as it is today to be honest with who I am and what I’m feeling so you know if you every time you like Ted talks that’s definitely one to catch mmhm but she talks about time and I’m just gonna paraphrase but how time is though greatest nonrenewable resource that we have and I think that that this year the one gift that this year gave us was time together yeah that was that was a gift we had plenty of time together whether that be however however that looks we had time together to just be right and even with the pressures of in that time needing to be the educator and the therapist along with being a parent and that can be overwhelming sometimes and I know people deal with that different ways at the at the core of it was we did have those times together there wasn’t someone else educating my child or or conducting the therapies I had to learn how to do it we had to learn how to do it and do it in the best way we could and the most positing a take out of that is that we were there together to do it and we could see the work that was being done and we made some great changes you know in the curriculum or in the studies of for both Liam and Sophia as far as you know with Liam just being right there and that ability to support him and to proof if you will his ability yeah to prove what we what we’re always trying to prove every year we go into our IT peas and we really don’t necessarily have a leg to stand on but this time we were able to gather our information first hand and then presented in the IDPs and that was a gift because there’s no way they can dispute the fact that it’s not it wasn’t an opinion it was proof there was a it was a fact and now going forward now we have a true baseline because that’s really what they work off of is a bass line and now we have a true baseline so I would go back to a normal school year and say just make sure you’re you’re gathering your information and keeping track of that making videos and stuff and that’s what I do going forward because now I have a baseline of this is the ability this is what can happen with support so that was such a gift and I do a really quick a reminder as we’re going into the new year because I know that a lot of schools are still I mean we’re still on lockdown where we’re going to distance learning for the rest of the school year just know that IP’s are still happening assessments are still have Benin’s supports are still happening so there are guidelines and timelines and legalities to all of it we have a few episodes on IDPs and supports so check those out and also you know there’s other different sports that you can look up to find out in your area what those time lines look like N. you know for us distance learning was something that end up being a blessing I know that was tough for a lot of people well it was still hard work commute yes but I think it was hard work it was and it was a negative four percentage of of the kids and out in a negative for a percentage of our dances and community but there’s there’s a positive part of that I know that voice might not have been %HESITATION very well but I think there were positives to come out of it I think the challenge was that when this pandemic hit and you know we shift into needed to support our kids more than that the focus shifted to really supporting that the typical children without IT peas and to take away the supports from children with IEPs I mean we heard stuff about we don’t DO IT peas were now holding assessments were and all of these things that happen that really shined a light on the need to continue to push forward to make that change and have a voice be heard so in the challenge what we see is that the gift of it is to know yeah we we really need to continue to take and we really need to continue to move forward we really content need to continue to fight this fight for the education of our children for the the rights for children so I think even though it’s sad they said that this is this is what was kinda came to the head I think it’s a gift because there’s no denying that that is the situation that that were in still yeah so I mean I I M. probably unknowingly optimistic at times but I do believe that there’s a gift that will come from the challenge yeah so I encourage you you know keep on the school for your IP’s fell this time lines go to your district’s website there’s going to be something for special education in every district in every state keep everything in writing everything with the time line and keep them accountable to your child and making sure that they get the supports that they need so it’s a new year a blank page a new beginning and a lot of times the new year comes with this pressure of resolutions right William Henry first we have to make what are we going to do to make these changes it’s literally a countdown it is a count down and then we write these less I will sometimes to take the pressure off resolutions I make them in November so that way I don’t feel that pressure I feel that if I make a resolution on January first on January third I’m eating Cheetos for breakfast that I don’t feel like I failed in some major way I feel like there’s less pressure if I just say you know I’m shifting my goals I’m shifting my focus this is what I want to create in my life and I approach it that way it takes a lot of pressure and that just comes from experience of putting that pressure on myself yeah N. E. talking to Sophia the other day and she was making a list for the day and it really became apparent as it often does when I’m trying to teach her something that I see how much I need to learn it she’s making this list and she becomes totally overwhelmed because she’s woken up later she can’t check things off your list or whatever it is yeah and I was able to say that list is there to support you and help you and guide yet not overwhelm you right absolutely and so that’s what I want to encourage anybody who’s listening who does have a resolution or wants to make a list of the changes are what they want to create in their life that is a guideline it’s kind of at a touch tone to keep coming back like oh this is where I want to go this is the path that went head down it shouldn’t be there to overwhelm you know and play in our lives daily weekly yearly we we have those pressures because we have the pressures of services are supporting our child or getting them what they need or helping them to access their curriculum or how they function in society inclusion there’s so many things well there’s so many that you couldn’t pack that into window your list and you can write you can’t it just multiplies as you go and and it just you have to be you have to know what you can do and know what what you wanna do you want to do later but it doesn’t have to all be done and you can be a bit frustrated I understand that but don’t overwhelm yourself with this with this have to have to you know because it’s not a it’s not a pressure that we need for me when I have all of those and it gets overwhelming I just stop like I get overwhelmed and I’m not move until it did I’m not going to yeah I’m not going into any direction and I think it’s we know what we want to accomplish we know that we want our child to have the supports that we need we know that we want our child to have an education there’s so much that we want to accomplish and just knowing I think that’s the first step and then we take steps towards it and sometimes we take a step backwards or sometimes we need to stop or sometimes we need a breath or support or to learn more like you know that the episodes that are coming up I learned so much from speaking to these people that we got to speak to and these interviews I learned so much that I said you know what it’s time for me to dig back in and now I’m gonna take all this new stuff that I learned and now apply this new stuff and see where this takes me and I have no doubt that when I get to the next step I’m going to then learn more stuff and take new steps and take back in so I just want to encourage our listeners to take it easy and take a breath and take it one step at a time because each moment like a resolution bump in countdown ten ninety seven six of forty to one and it’s a new year and then you have this new year and it’s a new moment but every moment it’s a new moment every moment is a new chance to make a new choice to create something new to do something differently to change your mind to change to change yeah what to do with the same or to just stop %HESITATION it’s it’s it can feel some parent it can feel so so good to know that it any moment you can make a change you can write you can add two things you can subtract out whatever is good for you and I’ve said it many times but there are a limited number of minutes and hours in a day there are unlimited amount of moments is always a moment that you can make a change and it doesn’t have to be this countdown will clarify because you know time is this on renewable reset S. but what you’re saying no but the time is the minutes and and hours of time out moments inside the time there’s unlimited amount of time moments in time so that you can make a big change yeah so take that pressure off that if you don’t do it right the first time or what is even right take a right and wrong you are doing the best you can at that moment take that and you may get new information tomorrow or in a half hour that changes how you’re going to do it so instead of beating yourself up for how you did it do differently if you want to if you learn something that makes you change then do it differently and the next moment but take away that pressure or that regret or that overwhelming feeling and just try to take a moment we did this on new year’s day we did a breakfast Liam came into the kitchen and it took longer but I took that pressure I have this list of the morning we’re gonna get up we’re gonna do this we’re gonna do this is our check last week maker Smitty we make our coffee we do we make our breakfast and there’s a certain time frame that I get it done and and instead we shifted to the moment and making that moment ours and Liam came into the kitchen and instead of just saying this is what we’re gonna DO and you know plowing through everything was just embellished it was really enjoyed and and those moments that usually go off on my checklist and a towards getting the day started became Liam helping me grind the coffee beans and we’re going to measure it and this is what how we put it in and this is why we do it and this is what we’re making and it was a conversation and it was an experience so even that Monday and thing that I do every morning when I stopped to be in the moment to really live NFL that moment it was such a great experience and it didn’t take much longer yes but is it bad that I also like made an excuse for that and the fact that he was doing some Moti it’s not that way which is to go a bit ago but now and you know and that’s the thing is that I did there was a I remember there was a point point whereas it’s like wait no let him pull because he’s you know just holding that Cup and I was just like no we’re gonna wait because he’s actually getting %HESITATION T. right now so it shouldn’t matter I would I would like to get to a point a I or maybe not maybe just utilizing every moment like you know throw of actually getting the education by doing instead of sitting down and taking a half hour out of our day to sit and do resume with %HESITATION T. tank maybe just incorporating it but incorporating it without the pressure of Hey Hey Hey Hey this is %HESITATION TDS right to just incorporate into live it and to fill those moments so resolution isn’t just reserved for January first Ghandi quote Hamilton it’s not a it’s not a moment it’s a movement and it’s a movement to really be present and to do it differently this year I will work towards taking the pressure off and being present and having that list as a guideline and %HESITATION a structure like a ladder that I’m gonna work through but the resolution isn’t just reserved for twelve oh one on January first we can resolve to do something or change something or create something whatever we want M. one resolution I want to encourage every care giver out there is for self care so important I mean we’ve talked about it before it’s it’s it’s so needed N. the Senate elected right in the end one of the things that we saw during this whole pandemic in twenty twenty was the thing that came to the head was self care I mean there’s such a focus on mental health and I’m getting out and exercising and and taking the breath there so many times on these parent message boards for school I see Hey don’t worry about what they’re learning don’t worry about because the importance of self care was so prominent it was looming we need to take care of ourselves and that’s when the whole world is going through and experiencing the same thing so taking that as an example just like I took when the school decided these are this is how important the supports are what I’m carrying that with me into every I. E. P. as an example under extraordinary situations the conversation really turns to what matters for humanity in its self care and love and moments and breathing and so I just I for myself and I encourage our listeners and the care givers is it take the time for yourself to refill your bucket we also have a great episode from Paul Dennison SO wonderful meditation just a relaxation and going up so N. N. a meditation episode you’re right and I encourage you to you know take that twenty thirty minutes to do the meditation and giving yourself that little bit of time is going to help with your longevity it’s going to give you more energy to do what you have to do yeah so it is a new year and we also resolve that with this podcast we will work to our best ability to bring information to support this community to help change the perception of down syndrome to be just the positive experience that we’ve come to know and so if you ever if if there are any questions or that you have always feel free to reach out to us mmhm you reach out to us on on our website if we knew then dot com there’s easy way to touch base with us and we’re always checking that and and we we we welcome feedback and what the community needs to know and what the community questions are and we may not have the answers but we’re gonna work really hard to get them correct we’re gonna look form and support you to our best ability we’re really excited for our first interview as of this year well first off we have Steven Gustafson the founding member and basis of ten thousand maniacs and he has that was an exciting interview for so many reasons %HESITATION yeah well yes I mean right off the bat just the music was somebody one of the light of a man oh my god and their expand and his experience and his story because he is a sibling and his sister had down syndrome and it influenced him in so many ways that we talk about itself parents if you’re you know that’s one of the big questions that parents always have is how is this how will this influence my other children the data is overwhelming that it’s a positive experience but it’s so good to hear from an actual human you know and his late parents advocates before advocacy volume as of late night in the in the fifties you know so so that we’re so excited that’s going to be coming that’s our first one out and then we have makori pediatrics what we got to have a conversation with specialists and really examine behavior O. T. speech and get a lot of our questions answered and hopefully answer a lot of years so we’re really excited we’re excited for the blank page that is twenty twenty one and and moving forward and learning and growing and we appreciate you learning and growing with you if we knew them last February I may have bought more Lysol wipes thank you everyone.
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