44. Looking Back At A Decade: Liam Turns 10

Transcript

Hello and welcome to the If We Knew Then podcast, I’m Stephen Saux

And I’m Lori Saux

And this is a very special episode.

A very special episode, Liam turns ten! Okay they were laughing because this is this is a take two.

Yeah well you know we we are starting this podcast and kind of wondering what we’re going to give out to the world and we realize that we just need, and Lori reminded me that we need to just be ourselves and that’s what we’re going to give.

And the truth is there are no mistakes because I feel like what we just did we literally we recorded our intro and then Stephen stopped and he was like what was that and and I explained that the whole very special episode reminded me of tonight on NCIS it shows that the suit and it made me laugh and he was like well you can’t tell a joke that I don’t get and I was like that is who we are and going back and trying to re do it perfectly I think really is a great intro to Liam turns ten because one of the things that I’ve learned in that ten years is to just change what I can and accept but just be in the moment as it is so if we have the capability of result Liam but what we could do was that as well hi can I could just stop yeah and then delete it and go wait wait hold on I didn’t get that let’s do over well this is that’s kind of what this podcast is that we can just we can get here and now we can go okay we’re gonna pause and now let me tell you what I learned so maybe maybe we can’t go back and avoid a certain challenge or have the right verbiage or know the knowledge then but we can give that knowledge to somebody who started now so maybe they won’t have the same challenges and then they pass on the in the information to somebody next and I think the goal of this communication is to make it easier yeah and to make well that’s when anything’s better one way to make it easier and better is to learn from your own mistakes and other people’s mistakes or not even mistakes just experiences could be yeah we’re gonna we talk to people I something’s a mistake except somethings are a must if we if we think man we did it you know whenever you do something right now %HESITATION let me tell you how I did this is great and then you do some road %HESITATION right after we went to the DMV I tell you I didn’t go to the one downtown I went to the other one we were in and out in our C. tell everybody right right you think you’re given good information and that’s you probably are but that’s that’s the tragedy of the time and to me that’s a perfect way to start off because it’s been ten years just ten straight nonstop joy filled yeah really joy filled and I’m I’m not just being silly that I think honestly everybody who’s listening to this probably is there with me we have our challenges but everybody has challenges but I can look back now at ten years and just I’m hoping going forward be more relaxed yeah well and in this this came up because the other morning I woke up at a time that long ago I would have maybe been coming home and I could go back to sleep and so when that happens I get things done I DO my emails I or I I all the paperwork and all that fun stuff that you can’t get to during the day or that I can get to you but it’s like a give and take you if you sit down to do the taxes then that’s eight hours that you’re not doing homework or making meals are doing things that need to be done doing things that are important spending that quality time so I like to do that stuff when everybody’s asleep and on this occasion since it was Liam’s birthday approaching I decided to write after I got done with all my emails as they are in the market was yeah it was three in the morning and after I got done with all the emails %HESITATION to Liam’s IEP team which we communicate on a weekly basis and I have to say just a little side note that’s been going really well this year and his his successes in school has been amazing but also it calms because we’ve been fighting for we fought for for years to get communication with his IEP team and to get support and they failed him for four years four years services weren’t implemented just a disaster which you’ve if you’ve listened to some of the other episodes it was just just fighting the school system and just fighting to get the support and I say fight I don’t like to say fight very often because it is supposed to be a team but there are certain times when you dig your heels and and you say you know I know what they can on the surface this may be but this is where we’re failing him it’s nothing personal this is what we need and they say no or they say yes and then they don’t do it and you just have to be on top of that so for four years not included as William repeated first grade that’s something yep when you’re counting right it was kindergarten first first second ninth and third right so for four years we fought and for the first time now third grade which is a game changer as far as curriculum he’s on curriculum but he’s receiving the supports for the most part he’s he is due back supports because of the failed implementation of previous IP’s but he’s receiving the support that we’ve been asking for every year of my fight as always look at how well he’s doing on his own with just us what if we supported him where would the NBA because without the support he still managed to get into where yeah he’s on curriculum they can’t deny that he belongs on curriculum and that was without help so we fight for four years and finally he’s getting the supports and we have the communication and %HESITATION two weeks ago he got a spelling test back spelling test curriculum words although I will mention the accommodation of having a shorter list because twenty words is ten yeah because it’s just about learning the sound patterns one hundred percent ladies and gentleman ten out of ten words spelled correctly and a lot of that has to do with communication communication and support and support and because you we were noticing that he was getting certain things right and spat with spelling it hand written and then certain on the computer and it’s likely spelling it right but it has to do with how we’re getting the information if he knows it I would have him and it was the first time that I actually said wait these should if he’s getting it right here he should get credit for it hundred percent he had eight out of ten and nine a ten a nine out of ten and it hits bell but a spell of the one he missed on the nine out of ten correct all that crap on the other tests so so a hundred so that was so that was one of the emails that I had I had sent out it’s communicating with his team and he also wrote after that they eat like you used to do I used to write yeah you know I as a as a literature major as a young without no kids as a hotel those journals and then I had to go back and just off tossed so after I finish doing all that I took time to write and what really occurred to me when I was writing is the changes that have taken place over the last ten years at just even even the fact that I was writing and it seems like lately whenever I write I write or I think gosh I haven’t written in awhile and then I got to the point the other day where I said this is my new me time there’s no more say no I haven’t written in awhile that’s just my me time this is the new schedule this is the new time to do it this is this is what we have now so Hey let’s let’s just get over I don’t write as much anymore and say and enjoy when I do and this is awesome that could resonate very easily with any parents but I think we can focus on parents with children disabilities that maybe there is more time required and and I will and I will say that it there is some more time required but also just the pressure of if you did take a moment to relax somehow there’s this pressure your family as of right now you’re feeling even more exponentially more than you are with a typical child I mean like I don’t feel that way as much with my daughter who is a typical twelve year old and if I feel like I’m not putting as much time in her homework for some reason I’m busy and working whatever maybe because it’s not magnified as much she also literally but also in my mind isn’t it I feel like that that it has magnified more if I if I if I lose time studying or going of words what Liam well I think honestly because and this is one of the fights that I always have and and Liam’s I explain a lot but I think because you said I don’t always use the early he you do have to there’s a I didn’t want to know is that we don’t fight no we but no well this is I’m talking about the IP and I do up until this point every I. P. has been a fight when you have to pay a lawyer to sit by your side to make sure that your son civil rights aren’t violated that’s a fight I but that’s a fight worth having and %HESITATION you know I choose my battles %HESITATION but I think and it what you’re saying about with Sophia how you can say you know what and this is what I need to do right now and so if I don’t put the time in on the math you know what tomorrow night you’re going to get the time on the math or next week or if she fails the test then we put the work in and we know where we have to work Liam does not not if we want to keep among curriculum not if we want to keep him on track for any kind of diploma or getting the support you need he does not at this point get those same rights to fail and that is one of my other arguments and his I. E. P. is that why does he have to get a hundred percent he has to do well because when I when I magnify the work that he does in the IP because they’ll go no he’s not reaching the goal as far as curriculum goes this last I. P. I pulled out his homework and I said okay so you’re saying he doesn’t get competent he’s he’s failing composition but he’s actually got a forty five percent so he’s not failing as an I don’t know anything he’s forty five where there’s a sixty but there’s a fifty so he’s not not getting it he’s at the point he is at the precipice of getting it so what do we need to do to support so he does get it but I have to do Montel fork that I have to do in order to get there and I have to get there I have to look at everything I have to break down the grades and I have to prove to them that I could probably pull five kids out of his class at or at the same place but their neurotypical so they’re not at risk of losing their placement in the classroom or being pulled off curriculum or any of the things that Liam is at risk for behaving or learning at the same rate Sophia she could get an F. on a test because she didn’t get to study and she can still pull that grade up to an a she can she’s not going to get pulled out I could fill a few tests and then you know at the end of the day they’re still gonna passer yeah the next level the next grade level completely on track for diploma or graduate from middle school wherever she is that Liam hasn’t got that will be told well listen he’s just not with the kids so let’s have this ultimate curriculum is put him in a maybe a special day class miss let’s move him to these out of the classroom and a lot of different options that could happen to him that wouldn’t happen to a typical child so I think that’s why you feel what you feel because yeah yeah you’re you’re six or higher yes six hundred million if you don’t if you if you miss because now he’s he %HESITATION by the way that hundred percent he it was not with extra time to study it was with the class with the same four days he had the spelling words for four days or five days and he still got a hundred percent but with Liam if you say I misspelling words tonight now he’s down to three days to get the same amount of words and if he fails then you look at yourself and you go that’s because I didn’t do the work yeah you know and and I feel like I’ve I wasn’t always his strength spelling I mean this is just like well here have supported it’s just repetition repetition we realize that you just do it over and over and when you think about you’re in this world of almost %HESITATION learning can be a slow motion but the world time still revolves the same so you really are like on on you have to be on the market like you the pressure is there because the world’s moving the same pace you still have like you said the five days for the words or a test is coming up in something else in two weeks Liam needs that repetition he needs that extra time to to get things sometimes and that’s where so if you could cram Liam’s not cramming no they won’t cramp but I will say it’s also Liam never had support before Liam never had %HESITATION the communication before them had long they didn’t put the and here’s that another thing about knowing to be able to know what you need to do is we didn’t know to ask for a shorter spelling list that’s something they should have offered you know we gotta get that out because it was in and out because of the first couple tests and then they mentioned it and because they’ve never mentioned it before I was very skeptical and I said I want him on curriculum and then I was informed that yes their curriculum it’s just about learning the spelling patterns so we can just give them a few of each spelling pattern instead of so many so it’s actually something that should have been implemented years ago but it wasn’t so here %HESITATION if you just started a wherever you are %HESITATION in the curriculum in the education system I’m gonna give you two accommodations that we learned this year the shorter spelling list the shorter list of words shorter fewer problems in math even though he still does all the math problems yet like homework now might be you know Hey let’s just do five of the ten problems right it’s all the same addition subtraction wool and and here is a golden egg that I got and it was handed to me this year that nobody offered up at the IP it nor and his resources calculator they cannot be used on state testing which I don’t understand but a calculator well the annex is it wouldn’t be used in the state and state test data for that but if it’s an accommodation yeah because he needs it but anyway we’ll we’ll do another whole thing on those St destin and stuff once we get more information because but he can use it in the classroom so he learned edition with the number line and subtraction with the number line and those are a but then we got to multiplication and that’s all about memorization and that is a challenge right and that’s a challenge ability with down syndrome is that short term memory so I saw somebody’s child doing algebra online and I message that mother which I never do and I don’t do that to strangers but I said listen you have to tell me how did you get past multiplication because that is multiplication and division how did you do that and she said calculator and I heard those voices yeah because it’s it’s memory it’s just memorization right as long as he knows and understands I don’t understand there’s a concept of you know you have for parts of foreign to show that how are we gonna show it for four quarters and you divide and you have a sense of your quarters and yeah Adam all up you can do that but it’s the concept and then you just memorize your times tables and this allows him to take to get past that to get on to the next where he can give him it gives him the ability to now now apply those instead of having to learn them and apply now we just apply those and it’s going to be honest he doesn’t have a calculator on the phone and everybody out there and he’s gonna if you everybody does and even what was great for me is yes as for his birthday Liam he wanted his sister to best friends to come over that’s who he wanted to come over to eat cake but we are take his take he wanted to go to Disneyland and go to a hotel so that’s what we’re doing but he also wanted not like a big party but to have his sister’s two best friends who he adores come over for cake and to do math he did because we were doing homework and then he said okay listen we’ll have cake and then first and then Caroline and Sarah and Caroline certain come over and help me with math time and that he was excited Hey this is the best themed party ever yeah so we had three little liars Iron Man teaching leads to division but what struck me is those girls are in seventh grade and they were having trouble they argued a little bit about some of what it was what how it what it was supposed to be yeah because it was a it was a water problem right and there is and there is a grand out here while there figured out the right kind of bounced off it just now you do it is %HESITATION it means that they’re allowed to do that yeah they’re allowed to know and I think that’s the biggest thing is that going back to what you had initially said was that pressure of finding time for me is probably one of the most selfish and hard things to carve out because the stakes are so high if I give away any of the moments that we know has been you know put aside for this is we come home with decompress for thirty minutes and then it’s pretty much homework homework and dinner till the end of the day yeah and if we give and if we compromise those minutes there it’s just it’s this the day short when trying to debate it’s very short and and you know he the end does about two to three hours of yeah I mean the schools down to thirty ishe %HESITATION whatever little before two twenty three Pixiv he up at three get home it’s a little after about four weeks %HESITATION homework you can add decompress forty five minutes and then homework and then you know dinner is all it’s dinner and you know dinner takes a body to make you know that’s not not a body to sit next to on to that right an issue when one of his work and or or that time yeah definitely %HESITATION and then you serving you and you and then clean up that’s a body and so you’re still trying to finish up and then start went down and %HESITATION spent time so it does go quick and so that’s that’s how I we got onto St that me time is different right me time is for us it’s more family time or it’s the these little gifts that we give each other as far as but I was sick last week you sleep and get better and I’ll do this but knowing that when your partner is is making that sacrifice I am fully cognisant of how much more of a load like you’re you’re pulling as far as to try to get get everything done I think as a partner I should tell you and live on cast that I’ll agree to do it too and hopefully you will but if I was sick or hurt my back or whatever reason and you say Hey rest because what’s gonna be best you rest now and you become under percent and we’re back to two people to fully allow you to do it too like for me to actually rest it is not easy and that’s not easy for you as well when I yell at you exactly I think you have to address your sick go go back to bed I’m gonna take the kids to school and I’m gonna give you two hours of sleep but it’s not easy to to do that is %HESITATION go great let me I can hear some pots and pans rusting I can hear books and bags getting packed and you know you kind of can hear what’s going on and you’re not participating and it can be guilt yeah he’s so much guilt you’re trying to muster I know I’ll get there and I’m just like I’m I’m in my if I’m awake then I can tell you about what you that it’s with no strings attached I’m not doing it to to get any praise after I’m not doing it with with any spite I’m doing it I’m doing it later legitimately what do you do I’m trying to throw it out there now because these are things I think of when I if I was laying down in bed and I’m guilty I feel guilty yeah Mike I wish I would like I I’ll get I’ll do one thing yeah I don’t know I don’t yeah one thing no yelling active ed because I’m mad because look I’m letting you sleep please sleep get better don’t make me now I have to do everything and plus now I’m taking care of you yeah I’ve told you to go to just make yourself better right right man but I think we both and I think it’s so funny because and I’ll be sick just for the record is not me time not being again this is how our facilities have changed but what but I put it becomes we’re taking care of yourself in any way becomes me time it’s totally meat so if you’re sick and you’re just but I walk around with a nap at ninety and hobbling to the class to do drop it instead of wresting pusher so it’s better yeah that do it yeah I don’t I don’t know if everybody does that or if you have to do it %HESITATION that’s just how I am programmed that’s just what I do and it’s in no way right not everyone I admire there’s a whole spectrum of how couples work right obviously there’s people listen this podcast that are not a couple and their D. and then they’re dealing with life you know more on their own shout out to single parents I guess I yeah I have to tell you as a couple you know how couples run definitely financially Sharon church chores too I mean they can be totally one sided sometimes either way or it could be as evenly divided as well and that’s kind of a judgment to say it’s one sided I think it can be differently cited I think you know that yes he split up differently if but we’re only talking we’re talking about in home no we’re coming in homework on kids home right but when one of us is but on the same note when one of us is working what we just talked about is in the ever an option that’s not an option when one of us is working when one of us is working and the other one does have to muster it to get out of bed they do have to do everything that’s you have to do a one year deal it’s harder on the one working because as soon as they’re back they’re working they’re working yeah users are back from their job the work in the house it’s not like will I know you worked gone are the days when dad comes home and sits down in his recliner with the whiskey %HESITATION your back you just got to be back on because you’re on holiday but I think that’s that’s part of being a doing grow you know doing grown up stuff that’s being grown ups so back to Liam being dead what what I thought about was and this is encompassing everything I think I finally just accepted this is this this is just yet it’s not different this is just dead and and to instead say you know what I do have this little bit window of time I am going to just you know what I’m gonna do I’m gonna make the choice to sit and write so empowering myself that this is my choice that I’m going to take these these moments to do something that I enjoy which is writing and I can’t and I can choose to do that I can choose to do that instead of watching out while you were sleeping on Netflix when I have insomnia I can I can make that choice and I think that that in that point instead of it I I I don’t wanna use not victim because I am not a but not a victim of my life my life is choices all of a sudden this light went on as I’ll just make a new choice instead of I can’t sleep so I’ve done all the stuff I’m supposed to do I just I don’t ever get to watch TV on my own anyway so I’m gonna watch a movie no instead I’m gonna do something else and this is my choice amirite this is this is my new me time and I think along with that this whole week has banned this realization of my choices and the acceptance of my life the last ten years Liam has down syndrome S. only taken ten years I think it’s a small and I don’t mean and like %HESITATION the image I think it’s like I I don’t know how everybody else works but there’s these stages of acceptance of gist and different on different levels there is the the first time we heard the news is much different than you know %HESITATION this or I used to go to Disneyland whenever they’d ask what are your limitations what are his limitations I would literally have like %HESITATION but what what some would consider a panic attack because I would be so upset that all the things that I strive to overcome in my life now the band from Omaha wants to know what my son’s limits are and this is something that is very personal and then add this year was the first time I could go %HESITATION that’s not what he means he doesn’t need all that he just needs to know he doesn’t need to know all my concerns but it would really send me into a tizzy because when you’re working on your child not have any limits my child is limitless and you can’t say you know he’s working really hard and you don’t know is strengthened my apologies to every person who ever asked me that question who received it they get very upset you know and I would tell them every time you this needs to change because this is really hard for me it was that was a big challenge and so when I say have accepted it it’s now I can say these are our challenges when we come here boom boom boom that’s it completely detached from they don’t mean anything else you know but these are challenges today this is what we need a little help with this whole past couple weeks have been looking at really being highly cognizant and aware of our family our family dynamic are signed and just his language is coming and more the conversations I’m having with him and just really going this is where we are Liam has down syndrome and there’s node judgments are pressured to be anything else than where we are and taking the steps on our path not anybody else’s path using the information that we’ve received all the help and you know guidance but just like with Sophia this is our journey to stop everything being in my life been under such a microscope because the only one holding the microscope is me that’s all me I’m doing that and it’s based upon things that happened ten years ago it’s based upon comments made ten years ago something still process you know something but like the majority of it that impact moment was ten years ago when I was my life was turned upside down and all the input was a negative there was not one there was not one positive I mean there were relatives who emailed saying oh you poor thing you don’t deserve this there was you know doctors who said horrible things there is you know costed in grocery stores people not wanting to see my son’s pitcher out because it made them sad I mean there was so much and in ten years things have changed so I can let go of the past and re shift my eyes in a more hopeful except in this just is kind of manner I mean inclusion is it’s a topic inclusion as a things up again film at the Easter seals we participate in the easterseals disability challenge every year include yeah it is it’s hash tag inclusion that is a thing now and ten years ago but neither has Texan you know I always thought it was a pound sign the what it what it really great decade yeah and it is such a celebration that is my theme for this year is that just I’m just gonna be and enjoy enjoy the heck out of this ride because with both of our children it’s it’s so much learning in and sold many gaffes and we’re very fortunate because we laugh a lot and we play a lot and the other stuff the gunk we’re gonna work it out we’re gonna work work our way through the gunk and change the gunk so it’s not gone but it’s a gift and you know you never you don’t change people’s opinions through hate love is the only thing that can do that and so with as much empathy and kindness that we can give back to change it to say Hey this is William this is who he is he is not a diagnosis he is Liam he is full of potential like every single child he has good days and bad days he laughs and cries he can get as mad as the next guy M. B. as empathetic as this although I will say that some too sometimes is empathy and I think this is this is the difference with lamp though the reason why I don’t like that being attributed to down syndrome is I think we discussed this before is that if you attribute Liam’s goodness and kindness to down syndrome you’re saying the only people that can be that good and that kind are people with that chromosome but it’s not true anybody can be loving anybody can be empathetic he just does what is the best time of humans can be right and he shows is that because he doesn’t have an ulterior motive he doesn’t judge your kindness he doesn’t want anything back from his empathy or making sure you’re okay and I think that is the difference it’s not the down here it’s purer love that says I love you because you’re human and non human and I’m gonna be kind to you because that’s what I do and if you’re sad I’m going to ask you why because that’s how we care for one another and it’s it’s %HESITATION available to every living being on this earth to be that way and to say that it’s he can only the only people with down syndrome can do it is to limit the rest of us because we can all give that kind of love and I think the reason that it is true when it comes to lamb is because those are the reasons that it’s true is because it is pure and it does come from the best yeah I don’t think we’ve said it before but we don’t we have you talked about it before because it’s hard to it’s hard to pinpoint because at that point what people are saying oh your child’s an angel or %HESITATION he gives the best hugs all the time I’ll be honest I’m not always happy to hear that and I’ll tell you sometimes I’ll be like you know it’s funny because that used to offend me but I’m getting texts he gives pretty darn good hugs and then one day I realized it’s because he doesn’t come from a place of I want something back from you he doesn’t come from a place of superiority or judgment or any kind of anything he just comes from a place of there’s my friend and they need a hug I’m gonna hug you and when I see my friends I try to do that more because it’s like there’s my friend I love you I don’t know when I get to see you again and every moment is precious and I think that if I can take that and put it more into my day yeah and we all can if you think my child’s an angel just know you have that same ability we all have that same ability to love one another in that same way and so it’s been a really good ten years to get to and has been to get a maybe at people listen to this maybe it won’t take ten now they get to the point quicker I I just hope I I maybe if somebody would have put it to me that way I think that every time someone called my son in angel I have I would have been like okay thanks he’s showing the best that humanity can pay yeah and that really doesn’t have anything to do with down syndrome that has to do with humanity so with that in mind I’m going to try to dig deeper to pay better dad to be a better here better in ten years I think Liam has taught me a lot about myself and then also how to be a better human.

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