Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
And I’m Lori Saux.
And today we talk about lamb turning eleven all that’s happened in this eleven years all that we’ve learned %HESITATION special in the last year since we just had an episode about him turning ten in that decade to share the insights that we’ve learned this year with education with life with the pandemic supports and just celebrating lamb and his eleventh trip around the sun to see ourselves and him and Sofia eleven years later is to reflect on that is pretty pretty spectacular actually in a to be honest I’m a little surprised how I feel I’m a little surprised with how good I feel about everything to be honest when I look back eleven years even after the diagnosis had a chance to settle in I didn’t see where we are now being a possibility well I think just the sense that diagnosis had to settle and I think that’s what we’re working towards changing that after eleven years you just want to say what’s the big deal and and I think that the the big deal that’s placed on the diagnosis is really what makes the challenge yes so we just listen to the lamb turns ten because we made it a year ago that was one of our first episodes of this podcast and listening to it it was just I was struck by how I felt two year ago I feel like there was still some remanence perhaps of frustration I think most of our frustration comes from the education system and I think that is one thing that has to change we have to participate in its change S. parents just always advocating for a child’s right to placement in a classroom that has the least restrictive environment with the supports to access the curriculum to say that over never right we try to say that so many times because it’s absurd yeah with at about eleven years ago one of the challenges that I did not foresee was school I didn’t that wasn’t it wasn’t I don’t I didn’t and what I think is the beauty of podcasts is that you can you can learn of a macular and just from listening it fits our podcasts or someone else podcast about any subject you gonna learn about that subject from listening and to have those words that you say is a tool I mean it’s a real tool to have not only an IP but just in discussion with with the world he can ask you questions about educating you know it’s funny because for for his for the nth birthday someone asked me what he wanted and I or what is it what are his interests and what did he want and I said well he loves Avengers he loves movies he loves to read he loves the least restrictive environment with the supports he needs to access this curriculum that’s my those are my birthday wishes for them is to have all of those things be given to him so looking back in eleven years a I think that where Liam is today and where we are today thank you you know it’s like every life you you couldn’t have imagined it but it definitely isn’t anything to be feared and I’ll go back to just like the earliest thing if if this is a concern for any parent I remember when he was turning four years old and you don’t think about the the little ways that he makes you present so sometimes in life we just go through we know in our heads you know February is birthday fourth of July but with Liam it reminds you that anything that’s coming up you take a moment and discuss it Hey your birthday is in February this is how what you’re going to be I don’t know if we really did that too much with Sophia so I remember when he was turning for and I started to plan a birthday party for him and I just all of a sudden was so overwhelmed because I needed him to know what’s his birthday I needed to know that he knew it was his birthday that it wasn’t just some just some average day this is your birthday you’re gonna before and you know honestly in all unfairness I it it occurred to me an overwhelming to me in a moment so I thought now I’m gonna put that on him and I remember just you know we did the whole party party I remember how sad I was somewhere going Otis street for no what that is like I was so upset that maybe he wasn’t aware that this was his birthday and he was turning for them mentally he misses I don’t know is the fear felt funny and what no evidence we put ourselves it had it was so important because to me somehow that was like this milestone of participation I don’t know how much Sylvia understood when she turned four that it was a man’s restraint for I don’t know but for some reason there is so much more pressure and now at eleven well I know that he knows it’s his birthday and I know that he’s turned eleven and that’s like such a great thing I also learned that it’s those things aren’t important you know I think the pressure came from so many people all the time go %HESITATION tissue birthday how old are you how old will you be needing your prep him for those answers and I want him to be able to answer correctly and sometimes he’s goofing around right and so he’ll be late whatever his answer as if Sophia said that when she was his age or even if she did it today or whatever I mean I I have friends who lie about their age that %HESITATION forever twenty eight right we all do it but for some reason I have just my goal this year is just let go of that habit of holding him to a different bar that hold myself or anyone else that the he has to always perform at this level but says Michael like to let him just be so he can he can be nine AM this expectation not this this way that I think he should function in order for him to have success in the world well I saw a post from a good friend and it said we spend so much time teaching our children how to function around other people in the in the world why isn’t there more time spent teaching the world how to function around our children like why aren’t they the ones always working because the only things we will be teaching people is patience and acceptance and I think we can be more patient and accepting towards everyone so all that would be doing is making a shift where the world is more patient and just accepting everyone everyone in the world for who they are and where they are yeah I would have seen last year is so much independence %HESITATION he really wants to do things on his own and I’m finally letting him really do talking to him and and explain to him how to do something and then when he wants to do it himself I say great and I look I can leave the room and let him do it if it’s dressed himself put issues on Russia’s teeth and they come back and then great I can re adjuster change things and shama do it but he’s that’s how he’s gonna learn exactly learn if I just keep it I’ll do it for you because it’s maybe quicker or you know I can do it right the first time you know and so that whole slowing down part especially in the mornings before school or you want to go some place you can really take the time to slow down and let let him be more independent let him at least try and we try and try try try he might get it right away or he tries and we just it’s going to come my take a few times but you have to let him do it and given the time well I think that’s one of the things that I see is that we get on a schedule and you know there sometimes people slip in like Sofia’s been known to sleep in before school especially when we’re doing virtual learning and there’s not as much pressure to have that time for prep he then we go into our day and sometimes it’s like we can kind of sludge through and you know get our coffee a little late and just kind of fake it till we make it until we get there but it’s not fair to put that on Liam because we Liam doesn’t get that sludge time he gets that okay you woke up late and you’re kind of tired now go because you have to perform in school you have to participate you have to go to the services and work a little harder never he doesn’t get that break if he wakes up late if this whole family wakes up late Liam has to hit the ground if it’s a school day and he must perform from go and I think that needs to change and I think the reason it exists is because you know what it’s me and you and we know that if the teacher calls on him and he doesn’t answer if he doesn’t like articulate his words all of those things create a perception and it’s unfair perception because I can listen to the classroom and I can hear kids that are participating I can hear kids that maybe we’re playing a video game and now just got caught but there’s it’s just like you you you literally laughed it off as just being a kid yeah but I mean they could be told to stay after class when I talk but that’s just what happens with fourth grader right but for Liam were like no he has to do it a certain way because it’s not just him being of a kid it goes in his record it goes into the teacher’s mind of kids this is their perception but maybe it doesn’t matter right maybe that’s the shift I have to make that if if other people want to base their perception on our son on this one moment where he behaved like everybody would when they were still tired when they had a stomachache when they woke up late that’s not his problem it took me eleven years and one day to figure that out and he has a bigger Dayton manage then a lot of kids because he has services so he has all these different transitions yes to deal with right think about the difficulty of that and if you kind of start start off rough but you keep pushing through pushing through and not getting a chance to just really take a breath as a student and you just because do a transition them back to class and then made another transition back to class it’s it can be very difficult so it’s okay to take the time and say you know what it is not working right now we’re gonna take a minute look at literally turn the device off take a precedent for him to get out of his face take a breath and let him have that time and then let him enjoy the day he’s going to to get a lot more out of it if we let him enjoy his day instead and let him be a kid the my point is how is that different for any child right I know I’m just saying no I’m saying well I know you know no I know I know that’s it they get that doesn’t it’s not anything different that we would do for any child in all that we hear is you know the screen time and the effect of the screen time and all that so you’re absolutely right it’s just taking that time to I guess once a slowdown is take the pressure off I mean you take a picture of him of course you can perform better in and it’s gonna be happy to be happier in life but would we be happier and perform better as parents yeah put the pressure on ourselves talk about trying to be present I need a presently every minute of the day remind myself of what I just said I mean it’s hard I didn’t do it as much as I should have prior to Liam well I think I see the pressure it takes on you like I can hear the tone in your voice and I know that for distance learning I’ll just go just go do something else I’ll jump in because I think that when we shifted into virtual learning and the first week they were like grades don’t matter that changed my perception and I was like yeah the so profound grades don’t matter their success in life how they feel about themselves and that they learn right double during every kid will learn and I think that was the message that kept getting beat home to US bank they’re gonna learn they’re gonna get it that’s that’s all anybody said to the grades don’t matter and when I see you get overwhelmed because the day can be very overwhelming and you’re trying to learn and you’re trying to implement supports that aren’t being provided but you know the upside is we can provide them but when you’re the parent trying to beat the teacher trying to you know just create a day from what we have with the most success it can be overwhelming we can get stuck in the muck and mire of the unfairness of the situation that our child isn’t receiving certain sports that he’s supposed to have or no matter how much we have that’s not what this episode is about and it’s not really what what we’re about so we go into the day and we know what the challenges are going to be we we make the best of them but it doesn’t stop it from being overwhelming only we can stop it from being overwhelming because we can decide not to be overwhelmed it’s just that easy and difficult at the same time it’s like we we can step back and go you know what what is important in this moment our child mental health first of all he’s been on a computer for a year right that he learns well what is the lesson we have forty minutes to learn this lesson but it takes forty minutes in a classroom because every child has to be addressed but we can mute it and get the supports that he needs and he learns it and when we do that it takes the pressure off of him he can learn better and it takes the pressure off for you but I do see and eat in you I can see when you get stressed just like you can probably see when I get stressed well what I need to do more when I’m sitting next to him at the computer to take advantage of the fact that this is a difficult for for many many students typical and atypical but I can shut down the computer and give him a break if he needs it and but I need to give in to that and and know that it’s not the tech can release pressure for everybody right well the accommodations are in as I. P. number recent and one of the things we always get bothered about is Hey he’s not being given his accommodation Texas has claimed that accommodations those accommodations should be shorter assignments and more time to complete assignments so we would get frustrated because he wasn’t receiving those accommodations and now where we are seeing his success because we’re implementing the accommodations but then we really have to the ones that really matter like in the moment Mike let him take a breath so Liam is becoming a young adult he’s independent and a lot of waste and it’s a we need to focus on how do we nurture that independence and and what what I’ve seen is that right if I treat him like a young adult he’s going to act like a young adult I always talk to Sophia about the fact that Sophia always would find something new that she wanted to know how to do and she would always put this pressure on herself that she needs to know how to do it she didn’t give in my conversation with her all the time is you need to give yourself that ability that time frame to learn how to do it and watch yourself grow and what I need to do the same thing for him because I can’t just say Hey this is what we’re gonna do it now do it we need to enjoy that just like I say with Soviet enjoy that journey to get to where we want to be and enjoy it what’s going to come can we because because we’re gonna learn that we can learn we’re gonna learn that we grow we’re gonna see ourselves get stronger and again just in this moment I realize that’s a conversation I always have with her but I never have with him because it’s different when you’re on the outside pushing those milestones along right where we’re pushing the milestones along we’re introducing the new things so we have to then not be where we are but go back on that journey of how are we going to learn this how are we going to break it down what do we do to make it fun wait what how do we route remove the pressure of you know like when he was potty training or changing from a Sippy Cup to a regular Cup to a straw or eating using utensils are learning how to write or running or riding a bike which riding a bike with we’ve been on the bike a couple times but now he’s shown interest in the bike which is always going to be so much more beneficial as if it’s his interest not our interest and that’s every human it’s so much easier for like I want to learn something that I wanna learn not that I’m being forced to learn so how do we make it into this fun adventure knowing that it’s just creating ho yes one thing I noticed in the past couple years is the importance of modeling for him the importance of of not doing it for him but showing him especially with the speech with with sentence formation if I can just keep telling him after he says that he wants something if I can keep modeling what at the way the sentence should be formed and saying the sentence in the grammatically correct way then he’ll repeat that maybe needs a couple of times to do it maybe I do it a couple times and we take that the time and then I see it pops out of no where where he says the next time he says it and sometimes it’s it’s it’s it’s still needs a little bit of of of adjustment that’s great man we’re making progress and then you hear these things you go wow where that come from but it was because we just we’re doing it all day and every day and it just he saying the words and I didn’t and that’s a really great thing to remember and I guess that’s taking time as well you can hear what you want what’s it what is gonna ask and you know it because you’re the parent and maybe he left out a couple words do you know what he’s asking for and then you just do it but if you take the time to just maybe restate the correct way and then we do it and then it gives them an advantage for any anybody society the way you you speak says so much literally to other people about so much of yourself and so we we want lean to communicate we want him to be able to tell people what he wants well I think it definitely speaks on communication and expectation but not only what others expect but what he expects from himself because I have had this conversation with severe when the hello wells came out in the T. T. F. N. or what whatever I thank you yeah and I told her anything worth saying is worth saying correctly now when she gets older she can talk in as many short cuts that she wants to but you too well I have an influence I can create a foundation of her taking the time so again trading lamb like retries afia right taking the time because we will know we do take those short cuts and we used to do it with Sofia to like you he says put some of the sensor and then we can jump into it or we can go %HESITATION is this what you’re asking for and then you know we learned from speech not to make it to where it creates a frustration or hurts his self esteem by allowing him to rephrase it so that way that’s the habit instead of the habit that we always saw when he went to school that we would work on his articulation and then by that by Christmas break he had gone back into these patterns because people don’t have the patience to wait for him to ask or they finishes sentences and that’s the habit that we want to break it we have the power to do it because now he’s home so one thing that I’ve always said to parents when we’re talking about IP’s and discussing frustrations or disappointments is that you have more of an influence in your child’s life than anybody frustrations can be there as we make changes in the world but know that no matter what that frustration as you have more of an influence on your child whether it be something in society whether it be education whatever it is we have the greatest influence and I was told to fear that my job is to give you a good foundation to grow from and it’s the same for both my kids just give me a good foundation and we talk about jobs I did want to address that because I did see a couple questions out there of what jobs can our child do what job are you preparing your child to do what are you nurturing in them I mean this this world right now has so many opportunities because now we’re we’ve been introduced to the power of virtual even virtual education I mean that just so many classrooms when virtual that I think that just really opened the door for education for assistive technology what does your child want to do and then when you know what they want to do how do we support them to be able to do that I saw some really negative comments that one woman was looking for a job for her child and just some horrible things were set and put out there and I think she was offered to let him roll silverware for five cents a role ain him five dollars an hour so don’t let anybody in a restaurant mmhm the thing is is don’t let others below expectation take advantage and put the value on your child I understand that employer going you know what I I wanna give this kid a chance I wanna you know I like this kid and his family and but then pay them don’t say well I’m gonna give him a job and then under pay or are paid them in food or something you know it’s always best not perception of scene our children as less than because if I walked into that restaurant you think that they would offer to pay me five cents a role no because they know that I would which is exactly what I told you know that gets the law yeah I don’t think it’s I’m gonna give this kid a break maybe that’s when it hit a break is given given the charge up at with the same value of their time that you give to everyone that’s giving someone a chance giving someone a chance as Hey not everybody does this but I’m gonna do this M. but why doesn’t everybody that’s the question whether there soon mean that they can give less in return for work and these people be happy with it that’s not the way the world should be looked at I mean to be honest either pay the person or don’t don’t offer the job it’s not if you want to give to a charity then then get to a charity if you’re if if if the employer already thinks of it being like a charity case then give to the charity don’t hire someone and then just give whatever is easy for you like in pennies or food or well you have a job even if the employer’s coverage share a place that’s not charity it’s taking advantage of something I think the problem I have is that they’re looking at someone with down syndrome is charity and not another equal human beings that’s obvious his point is if the person is coming from that place well then give then I think it will hear and hear something too to not judge them but for the parents is would you put your child working in a place where that person doesn’t have a value of your to a real value of your child what kind of environment are we walking into when our children are are not being looked upon as equal our children are being paid less than for a job there’s no doubt to me if you paid this young adult the fair wage of an hourly wage do you pay everyone else whatever job they get they do there’s no doubt my mind you’re getting that in return there’s no doubt that any anyone’s gonna come into your your restaurant and see this person and talk this person they’re gonna feel better they’re gonna know somebody they can it this person is part of our community there’s no doubt that you’re that you’re getting you know as an employer think I’m putting money out to get something in return I pay somebody to pay you a wage said typical personal age to do this isn’t the same thing that thought of employing women a long time ago women didn’t have a value for how many years and then that became a fight and we we are fighting for equal wages for the same job it’s the same thing if there’s a job and you’re going to do it there’s a wage should be influenced by I’m a woman or I have down syndrome or any other difference that I have should not influence what you pay me that that’s what it comes down to when you’re looking for a job what can what job can our children do it comes back to us what jobs are we preparing them to do are we believing in them getting an education are we fighting for that education and if we’re not getting the education in school we have the power to educate our children we have that power in our house we’ve seen it from the pandemic we have the power to give them the support they need there’s so many different online places that offer different curriculums for our children and what do we really learned in elementary school what do we really learned and in middle school and high school what are we learning and then take those lessons and break them down and we can educate our child so I can fully recognize the fact that we have to fight for that education and the amount of power and the amount of money and energy that takes and it can be daunting sometimes we can do I know there are times when I come to a point where I go I just have to breathe and I know I’m gonna rest and I know that one of these responsibilities that I’ve put on myself are gonna falter I have learned and I’m still learning to be okay with that what ever my perception of faltering nous and where the hell did that come from I’m not faltering I’m being a parent and I’m being human and that’s that’s that and I have to enjoy my life I have to do what I’m passionate about and I get to do that and it doesn’t get taken away from me because people in the world see my child is less than that is their problem how can I make it good for my child from my life for the future for people who come behind him and for people who are on the same path as me so that’s where I am with creating equity creating equality it’s about equality so when we wanna talk about what job can my child do I think we need to think about what job are we preparing your child to do and have we asked her child what they wanna do and don’t be upset if what they say they want to do isn’t what you had in mind and I have to remember that because I think that’s the history of parents and children what you want them to do is most the time different than what they want them to do right that’s it so it should be any different just because your child has down syndrome and tells you what they want to do if it’s different do you support it how can I support you to reaching your goals right how can we do that and eventually the world will change if not the whole world you’re gonna find some place to support you as well if you keep creating that in your life if you keep creating an environment that supports your child you can find the same environment to support your child is gonna make the environment you’re gonna make that requirement talking about Steve Gustafson and his family right that number so is Steve Gustafson in the nineteen forties and fifties that environment wasn’t there so they went out made it we made it they made it on a big scale you make it on the scale that you can make it on in your life yeah so what changes have you seen in lamb this year from last year I see a lot of growth one was that with education right off the bat I see a lot of growth because we’re here supporting him as far as reading shapes fractions he he gets those things yeah and that’s not easy stuff no because we were shifting gears for teaching I said let me give you a break and I’ll take over this part and I do the English and the comprehension and Steven does the math well I said well let me let me see the math so I can maybe give you a break and do the math AS of travel with him I had some trouble in the lab yeah when I was a little kid do this this is amazing and Stephen had explained to me the math well the thing about fractions is and I’m not this is just because we’re in a virtual setting but they use the manipulatives which is what Liam uses but there for all the kids are using it and maybe they use this in the in the real clash and I don’t know but it’s really great taking a piece of paper fold in half opened in the piece of paper then John aligned with the folders and saying great we just made two parts to this whole right one and then you label one half one half just doing that and then go to thirds Natesan sixteens and all this but what a great thing to see in the classroom in general but for Liam it really has worked well maybe you just struck on it and the thing about the education is we know everybody’s being treated equally the supports that Liam has and has a P. are now being used on a daily basis because everybody is having to use them so that’s a great gift yeah I have said in court to that the inclusion has been that everyone is in the same place where everyone’s adapting and we can use those accommodations for the typical student as well because Linda student as an inclusive class rates inclusive so we can use it all I think that’s it is that now there was a frustration and also an encouragement when we went to virtual learning and there was these concerns that I add for so many years that I had voiced that now every parent was voicing them and it takes every parent it takes it takes unfortunately it took the typical population to also require that assistance to where people slow down and now lives at the same level of support as ever everybody is receiving the same support and when it’s %HESITATION everybody needs this then in that case easier it makes it easier right and so it’s a gift and maybe maybe that will create some changes in education N. changes in classrooms and changes moving forward and teachers were they’ve experienced it as well I know in one of our last PTA meetings they’re having the conversations about the impact and children needing more support and I think that’s great because then when it affects so many more children than people are interested people are interested in making that change and I however it has to happen I’m okay with as long as the change happens I see in lamb at eleven and awareness I’ve always he’s always present but I see an awareness maybe of some of the challenges that he might have weather like articulation and one pick people can’t understand him I see that frustration do you see that yeah I see the frustration I see that he is now more able to take the time text really try to explain himself used to be to me it used to be where if someone didn’t understand he might just be like whatever you give up and move on right now I think he feels confident enough that he can actually get no not that this and he tried to say it again %HESITATION got goes great last night in the zoom for his birthday and he’s like Hey guys Hey guys and he was telling people what to do or how they filter was pretty awesome but yeah I feel like he does have the ability to express now we’ve had challenges with speech so his expressive doesn’t necessarily his articulation isn’t necessarily that which everybody can understand so I feel like he’s more aware of when he’s challenged that’s why when I see that he’s frustrated like at the end of the night yesterday and he was kind of frustrated and I feel like that’s when I need to stop and start communicating and talking him through just three things so one of many give him words and just work with him on that basis to be able to understand where he’s coming from and what he’s feeling and then give him those tools because he’s gonna put pressure on himself he’s putting different pressures on himself so if something happens where he feels like he’s done it wrong or made a mistake I see the pressure now in him where he gets really upset so if I can go to him when he’s feeling those feelings and say Hey what’s going on and we have a conversation together and I’m getting some words out of them I can then relate to him just like I would with the fair will you know I feel that way too to feel this way because when I feel this way this is what helps me and everybody feels that way everybody does that or this is part of learning or this is whatever it is there’s tons of really great books out there actually on communicating and feelings that you know you can read together with your child that talks about different challenges and and what we’re feeling and and things like that well I see it when he he apologizes hill PA is a I’m sorry I’m sorry about maybe many things and also I know it’s it’s okay so his awareness is there that he maybe didn’t do exactly right but I can say there’s no reason he sorry we’re working through this you know his O. T. says that’s awesome is if you’re doing your best you don’t have to be sorry exactly right really great yeah I think I should bring that out into the world to see what people say stuff I can just remember that if you’re doing your best the reason Bizzarri right we can talk about physical health so he hasn’t had his eleven year old physical yet but a flat feet he was in the house a lot with that no shoes on so we noticed that he was supernatant and we went online you can go to a podiatrist and have them measure a arch for you or you can go online fountain some good supports online because we just can’t take the the inside of the shoe out and use the person and it’s a nice arch support especially we’re now having him wear shoes just inside his tennis shoes are just for inside that have supports in them it just to keep you aligned and it’s going to help your your whole body but it’s gonna wear down your your legs of it your feet if you’re just on the hardwood floor all day just in your socks that can happen because yeah it used to be only on the weekends we just walk around our socks sometimes we have some shoes for inside but they’re not really a lot of support but now that were inside practically every day for the entire day potentials on for inside I was just even started to notice structurally and you go to your podiatrist our pediatrician but I’ve I started to notice structurally on his foot and that’s going to go all the way up the spine all the way up into his alignment and I started doing it I have shoes to that is yes thank you it was actually starting to hurt well yes that does make sense let the I wouldn’t do that all right along if I was going out to the world and even if I was inside in the classroom or not in an office building I would have shoes on so at the other other little thing was dry skin and I have seen this has been a concern with with other people and I think that there again it’s winter time winter time you know every now and I’m not to say this isn’t surprised Esther they really need to go to the doctor for right this is the M. has really dry skin but really dress can we all know when we have really dry skin it can it can become really really dry skin right here and calluses so we found a product called a group by all good and it’s a it’s like a self and I put I put the item since it’s winter in its consumer drive put it all the way up I warm it up in my hands and I put it on his legs up underneath lotion after bath right just to make sure that the skin stays more stress but it’s been it’s been really it’s been phenomenal if feet knees and elbows I mean everyone can can use that but the stuff’s been great yeah so those are the two like physical we don’t we haven’t had a physical this year but he’s been healthy because we’ve been inside obviously the vaccine he’s too young to get the vaccine right we did receive the vaccine yeah we did %HESITATION in California the way it worked Liam is too young to get the vaccine but because he’s in California he’s with the regional center %HESITATION care givers are allowed to get the vaccine early there in a higher tier you just need a letter from your case worker at regional center and then make an appointment and we we were able to get our second dose couple weeks ago and we were very very quick with joyous about that I think it’s a it’s a miracle the scientific miracle that way everyone’s gonna get it soon but it’s just a way to protect your children if someone downstream is over the age of sixteen I believe they are qualified in California to get the vaccine there’s been people turned away and then people not turned away and I think it’s going through a process but at this point I think that’s how it is I’ve reached out to many other states and that’s not how it is I reached out to other countries that we are in connection with and that’s not how it is either but in California Evers parents and adults with around the age of sixteen over the age of sixteen or can get it and everybody’s gonna do what’s best for the family and that falls in line with whatever their beliefs are it was pretty scary I mean we hold two different beliefs with this like Stephen was gung ho because he’s you know science and and just studies it has been following it and I was a little trepidations because I it was new came around really fast came around kind of fast and so it was kinda scary up for me but this is scary I was just like I trust even so I knew that he did all the research because he researched everything he knew when it was coming up but I I can I can acknowledge that doing something brand new especially of vaccine there people out there that don’t even do vaccines for normal flow %HESITATION but I can acknowledge that it can be concerning because its it being the first here’s a lot of people concerned about something you just don’t know it’s and and how many people have had it tested on them and there’s thoughts and there’s also misinformation out there as well that you’re always dealing with and have a great deal as far as like real information it was on a very basic level doing something new that’s unknown can can be frightening but after we had a conversation in the car and on the way there it was that this is science and this is what science is for and we were so fortunate to be able to receive this vaccination to have that opportunity for me from my point of view that what overrode my fear was the thought that this was an opportunity that I was being given and that I was very fortunate I needed to do everything that I could to protect my family and also my commission my world my community different do you know anybody that I encounter %HESITATION that that I was given this opportunity and I know a lot of people out there that want the vaccine that that weren’t getting it or that they didn’t have the opportunity to do it so I was I was thankful and hopefully everyone gets it by the summer so we’ve talked a lot about education and challenges I was a fourth grade we are excited that he’s still on curriculum which we have fought for because it was important to us as we work for him it’s not important to everybody but it was important to us Liam is still on curriculum in the fourth grade and an inclusive classroom with his peers or any kitchen with a laptop with his peers and he has a one on one that he still has in the virtual world we’ve made that work we have a great episode with Kyle Davis from Corey pediatrics is a behavior less who explains what a one on one of PIB ID those services and what they look like in school so if you have any questions about that listen to Kyle articulate it because he’s so much better in making it clear what that means and how the supports help your child to access the curriculum Liam is doing fantastic in his curriculum math uses a calculator and has all the accommodations so when we go back to school or when you’re in school or what ever great your child is in find out what those accommodations are and they really do help I love all the playing field we’re also going to use a more at home now that we’ve been experiencing it in the classroom I can use this at all times and you know in all fairness to teachers like teachers especially our teacher now we’ve absorbed into the classes she’s teaching like thirty nine kids teachers have big classrooms and they’re not educated all the time %HESITATION what a ninety P. is over you know the truth is they might not have time to read through and make sure the accommodations are there and they’re at all times because they have so many kids so it’s it’s really a change that needs to take place on a bigger level like the district needs to change things and teacher education and having the support’s there in the classroom where these large classrooms that the teachers have the support to make sure that all students not just my child but all students have the accommodations that they need every single child has that that is that is every child has the accommodations they need and supports access their curriculum so we support teachers and we understand that they’re doing their best so how can we support the teacher so reading we’ve been supporting lamb and redeemed since he was being taught to read in school and that took a lot of support from us as far as being patient and taking the time to be with him every day so one thing that was really exciting as we finally found a series of books that are interested interesting to him yeah not the one that would affect the whole but he picked him a lot and so of course it’s gonna read him captain underpants captain underpants he found it in a movie that really funny act and they’re funny and they’re great and what I love about them is they combined the comic strip reading with also just narrative written in paragraphs and sentences so it’s engaging and it’s fun and the one thing that I really loved is that if you read about the author it talks about how he had challenges as a kid with ADHD and that he often had his chair moved outside the classroom I know it’s sad right but while his chair was outside the classroom he started to create this cartoon and this book I think that’s inspiring to our kids you and talk about what are you preparing your child to do let them know captain underpants was created by someone who is looked at as being a different learner nightly not included in the classroom physically taken adequate and very non inclusive environment I think that’s it you know things have changed that that used to be just move his classroom move Johnny seat outside classroom if you can’t act like everyone what kind of message that sent all the other kids well now the messages Hey being different is pretty cool because we’re all different but look at look at what he did and and I think for me when I was reading the back cover with lamb first of all it showed a picture of him as a little kid so how relatable is that and then also just talking about I just talking about his challenges that he had in school and I think that just talking about the challenge that in lamb he can go and inside he can know that Hey maybe I’ve I feel the same challenges maybe sometimes they put me outside the classroom maybe sometimes the teachers get frustrated with me I don’t know if I would have ever felt had about captain underpants no I better not incur encountered him %HESITATION yeah and date rape it’s a great series and and the most important part is that Liam’s engaged and Liam wants to read it oh man he was was into it he was within three of that but it feels good when your kid grabs a book and says I’m gonna read you like yes yeah no matter who who you get as you want them to enjoy what that team is going to be because it’s good that’s going to happen you’re not pushing them to to do it %HESITATION I don’t want any time to go by what we talk about school and not mentioning that Liam has started the cello %HESITATION something that maybe it wasn’t his you know kind of go back to the other side wasn’t his first choice to do it’s not always something he wants to do but he does enjoy it and it’s %HESITATION it’s music it’s a sound okay so I’m gonna go back a little bit surprised no no no I’m gonna go back a little bit my words where I said you know accepting what they want to do because let’s face it with musical instrument I don’t know if any kid wants to look like a couple there is a virtuoso going alright right right but music is so good for every child and for their brain and for the development of the brain you can just you can read this different studies about how when Liam was in the Nick you we put an I pod in his incubator just to activate different parts of his brain so he’d always have some kind of activation and stimulation so music is really good and honestly our daughter plays the violin the guitar and the guitar but now that she’s at the end of the eighth grade and she’s at a point where she’s good at what she’s doing now it’s interesting it was it was challenging to get her to want to play when it’s not where they want it to be everybody wants to be really great right away everybody wants to be a Democrat right and there’s this some learning curve there’s these growing pains that people that you don’t know who really nobody wants to go through the right when it’s a cello and violin growing pains for neighbors and for Lima the cello what worked out great with the cello is it something that he can support up against himself so he didn’t have to work as a as hard on holding it up because I was thinking if he has a hold of violent up it can really wear him out at first and he would just to get through that first step might be really hard just holding it up but he can lean himself against the cello the hardest part is holding the a lighter thing the borough horizontal to the ground and that’s a lot of effort so he’s got a lot of work doing that on his hands and having to control his hand on the note on the string he wants it to hit and man he likes it when he makes a good noise come out of that cello he likes it now like like we said that is something that we do have to remind him pushing to do make time and moments to do but I can only imagine the future benefits for him because I’ve seen the benefits and Sophia with violin and instruments and at its it we note how has affected her in a positive way absolutely and and I was just thinking that you know when you talk about education it would be so good to like incorporate that with his occupational therapy because the occupational therapy strength in his hands and that something that you know we can and will talk to his maybe once a week the last five minutes he can show because when that’s gonna help you able to perform a little and that makes kids feel good every kid and also be using that strength yeah he has an occupational therapy session this about half hour after his cello session online and those days can be a little more difficult taxing %HESITATION but it’s nice to discuss with the %HESITATION T. because it is a lot of O. T. it is a lot of strengthening in N. O. T. would know better the the the words to use but having to manipulate something accurately you know that’s that’s difficult it’s gonna be I just know it’s gonna pay off it’s something we didn’t we made sure we took advantage of we could easily turn down that opportunity and I think it’s a good choice and we have an ink very inclusive teacher %HESITATION yes she’s that works or teacher is amazing and this might just be arts across the board very inclusive I think we we also experienced it with the dance studio creation station that our children went to together and that Sophia still part of this is that full and it was the first time that we were so used to having to do all this extra work to get him included and we were like with Devon to take dance this is and what do we need to do do we need to hire somebody to be there with him and it was the first time someone just because I know that in command let him dance and I gotta tell you when you surround yourself with people who support you and your child it’s great but the M. name has a great team and his orchestra teacher is phenomenal and patient and this all those things that we talk about that we need to get she definitely has those his occupational therapist is has those tools and and this year has resource teacher is is the same you know we see I think being on this side of the table where were participating in school we can really see the people who support him and I think I have a deeper priest I know I have a deeper appreciation for those people because they’re so instrumental in his life and success no pun intended so this is eleven and we had no idea where we would be eleven years ago but had I known that at eleven I would be in the kitchen all day baking his favorite birthday cake in the same fashion that I do for his sister and having the same consistent same concerns as I have for his sister’s celebrations no more maybe a few less because I you know we didn’t have a that that big party to plan because were virtual and also because Liam isn’t a fan of big parties so you know usually it’s the a nice quiet get away because he loves the beach she loves hotels I mean he’s a man after my own heart say had it not eleven that all those fears that I had in that moment when I received the diagnosis those fears that were based on things that I didn’t even know there based on the unknown they were based on perceptions that other people had %HESITATION told me or just different words that impacted that moment had I had insight into yesterday at that moment it would’ve been different when they when they told me I would have said okay let’s they’re getting those supports in to where not only he can access his curriculum but also he can access his life and his potential that’s what I would have said because yesterday was just like every birthday celebration a celebration of him and he asked for his favorite cake that I made him and his favorite foods and I had a list of things that he wanted and it was a celebration a celebration of lamb all things lamb everything that he loves everything that he loves to do there are movies and books and pizza and chicken strips ransom French fries and people singing to him they were minions and adventurous and Star Wars and balloons they were friends has a great day what do I have hopes for this year we’re gonna work on the cello and learn how to ride a bike or we’re gonna at least dead take those steps we’re gonna take the first pedal the first battle is the hardest M. my hopes are that he has the support to not only accesses curriculum but to access his life that he knows he is loved and he’s able that we create a foundation for him based in love that gives him confidence and self worth that is unshakeable by others and whatever their perceptions maybe that Liam knows himself and that we know them and we sealing them and we celebrate him everyday encourage him everyday our wish for Liam is just like with Sophia we want to create a foundation that supports and taxes the dreams in the world the courage and self worth to forge his own path to know who he is to have confidence know he’s loved and equal.
Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.