26. PALS Programs – A Deeper Conversation About Down Syndrome

Transcript

Hello and welcome to the If We Knew Then Podcast. I’m Stephen Saux

And I’m Lori Saux

And today we’re joined again by members of the PALS Programs. Joining us is co founder and executive director Jennie Newbery Ross and her mother Robyn and brother Jason. They were also joined by Congratulations Project associate Grace Wahle and communications coordinator Colton Davies. When we last talked to the group we focused on the details and origins of their wonderful congratulations project the congratulations project as they stated is an initiative where adults with down syndrome write letters to new and expecting parents of a baby with a down syndrome diagnosis these letters are designed to inspire encourage welcome and most importantly congratulate new families although we do revisit the congratulations project in this episode we focus more on how the pals programs as a whole is planning for future camps and some of the more personal individualized experiences these members have with down syndrome we get to hear about the education system from Robbins perspective as a mother and also hear more from Jenny and how growing up with a brother with down syndrome has shaped her life of advocacy so let’s begin Jenny in the group is so great having you back on the podcast thank you so much so covert nineteen shut most things down over the summer what is the future expectations and plans for the house programs this summer was a little rocky not exactly what we plant %HESITATION we did not run any of our programs this summer so we have been spending the summer really planning for the future and really rolling out kind of an extra feature stops about we want to be and how we want to grow as an organization organization right now we’re focused on community building on reaching more campers and more volunteers specifically from diverse backgrounds that we haven’t been able to reach so far I’m so that’s kind of a big part of our expansion plan we expect to continue to grow we ran some numbers with a growing at a rate of about twenty two percent per year which is a little bit crazy so %HESITATION I’m trying to check keep keep track of that and that continue to bring this program to as many people as possible across the country if we like I said we have seventeen locations right now we’re expanding to more programs in southern and northern California so definitely things coming your way so we can hang on for a couple years we should have a program in your backyard we hoped %HESITATION and %HESITATION and then continuing to go to grow the congratulations project you know that’s been something that has you know started as a way for us to give back what has now become just as key cornerstone of what we do an opportunity for our campers and volunteers to reflect on the transformative experience studies pals and for us to kind of build the next generation of campers grease and I were talking a couple days ago and %HESITATION in two or three years we will have the first round of members of young children and babies with down syndrome who received letters will be eligible for and so it’ll be that now having done we can grasp for twelve years twelve is when we start camp programs will actually be able to bring some of those initial letter recipients from our first year you can’t and that’s been something we’ve been looking forward to for a long time twenty two percent is fantastic there’s a probably a little daunting well I think the reason I think that that’s great is because it speaks to the fact that our communities being heard and seen and supported because when when that Liam was very small I know Stephen tonight we would look at the numbers and go there are people with down syndrome their children with down syndrome in this community where are they like we didn’t you we didn’t they didn’t have a of a presence so that to me twenty two percent is a rise of twenty two percent it’s just say it sounds like a great number it sounds like some great changes are are happening in the community a question I had was Jason had mentioned his experience in school and some bullying that occurred I know when to find find them right we went advocacy just goes too far %HESITATION but Liam had a brush with that as well so if it did N. and that some something that affects you as a parent I don’t know if if robin you could talk about how that was handled and and maybe a little a little insight on how schools handle does well with him because that’s always a huge question for everyone yeah I think %HESITATION was there two years I guess between Jenny and Jason so she kinda always was there you know paving the way that you know for him I kind of had an eye out for him in some instances you knew you knew the building was there but you weren’t sure he was king into it as much so some something you could overlook thank you can you see a lot but there’s some that you could overlook %HESITATION you know I think all the way through school we included Jason yeah now as far as %HESITATION he was included all the way up to high school we met resistance all the way it was like you know now we can’t do this no we can’t do that and we were constantly let’s try you know they always wanna start start here we were like let’s start here we have to you know we’ll do that one so I think it kind of comes along with it in the sense that I think the more Jason is with his typical peers the more it just becomes a matter of fact this is just another student and you know in some cases like they did not one clue him in high school Jason was and we put him in a typical social studies class but not the Advanced Placement let’s say class or something a lot of kids in the typical class just didn’t want to do the work chasing can memorize stuff he may not be able to do a lot of the reasoning skills but his memory was so amazing that people wanted on his team to do the jeopardy games because he would do flashcards and could pick up things that way so there were certain points where you know a lot of his gifts became parents and other kids could key into it like wow you know so I think because M. A. C. I’ve seen after Jason run all the way through school I noticed that the district took a step back in the stock including kids so I don’t you know I would have liked to have seen it continued but I you know I think there’s still a lot of work to be done as far as that goes when you speak about including the cloud you just mean inclusion like being in an an inclusive classroom with his peers he was yeah he was in this year’s like when he was at a younger age %HESITATION he may have been cold for speech but if you need extra help with speech you know tea or something he was there for the other skills when we started out but it was kindergarten kindergarten was happy maybe stay the full day you know we get half with one and the other there was a lot of %HESITATION actor Jason was born I didn’t go back to work so there was a lot of whatever he was doing in school I was kind of reinforcing it home so as we you know continue along that way he you know even when you think it when he got to high school they would include him for I think we pulled him for Macksville and some reading you know skills but what I found is what they were working on a NASA were skills that you don’t really need to use he uses a credit card he swiped the card the same way I do he does not need to know how can’t change because I don’t catching him no not very many people do I mean that’s a skill and I think one of the give somebody gave me one time because eat lamb got to a certain point of math and they were like calculator as for calculator but they don’t tell you and it and I think when you say %HESITATION you know the district step back one thing that always concerns Stephen at night is when we’re talking about inclusion we fight and and and we we fight so much that we’re trying to find another word because I feel like fight sounds so aggressive but maybe that’s what you have to you know I mean it gets a bad tone but root cause and also it shouldn’t be a fight %HESITATION and I think the unfortunate thing is we’re always there advocate as advocating for him to be in an inclusive classroom and and that’s obviously what you did and so they included you because it’s the law but they don’t the people who don’t know to fight and to advocate are lost in the shuffle exactly and I also think when you include them %HESITATION we also have to look at %HESITATION Jason’s behavior in that situation terror and if if he was doing something that may not be appropriate need sometimes you have to suffer the consequence because that’s the only way he was going to not do that you know like if you’re going to go up and put your arm around you know a guy and he doesn’t like it you know he’s probably gonna swing but I think that’s that’s something that our children are delighted every other child gets the opportunity to do something to make a mistake and learn the consequence but there’s a there’s a at the same time there’s a very low bar put there and a huge high bar thank god this is what we expect of you but if if you don’t achieve this then you’re you’re judged by it so there’s no %HESITATION it that the equality isn’t there yeah we’ve always found that the that Liam seems to listen Liam’s Liam’s a gorgeous kid who who I can see how anybody could see in disco he’s awesome is adorable I love it but that doesn’t mean and I think this is a preset and in some of society there’s a huge process and so many times is a huge percentage of society that just wraps her arms around and hugs and nurtures some with down syndrome and we’ll let them get away with anything N. and that happens in the school system too and it it does nothing for Liam except make him think he can do what he wants to do and then and then when he’s told to do something that’s academic and he may resist it’s all of a sudden a big deal you know exactly yeah it it you have to carry through it and treat them and the and I’ve always felt that when we got them to go along with this and raise that bar you know there were many times he could you know get so much closer but if you’re going to constantly say no we’re going to start here they’re never going to raise it they’re gonna leave you right where you are and they never see the potential yeah that’s been our issue with things that are going on in school where the school system wants to give him a different kind of work focus and and we feel like let’s keep let’s keep it up there let him keep striving just like I want to I want to reach for higher too you know and I’m not going to if I’m given you know easy work if I had the same conversation with my daughter that they tell me to have with my son they would pull me to the side and say miss socks we need to talk to you right exactly yeah and I think even though like you know you look at some of the things we included Jason and and you know we thought whether he remembers the World War two or this or that his treated but to be honest he can recall a lot more things and in general conversation and talking to other people you know he’s got the those experiences because he was able to sit in this class so he don’t suppose the kids your it’s just not fair to you know leave them with a deficit of stuff that they can learn can I ask you Jason how do you feel about all this because I think that you lived it we can a you know and that’s that’s always my my my question is do you have for lamb like what what does he feel because I’m not talking about you in third person but what’s your experience living through everything that we’re talking about well this is racing through a teacher named Mrs Tina and the stock offering at you and I’m listening I found out I she’s my reader and I got a ten night she’s like my niece comes when she was in school she always will be done online either so my teachers like man on me though I have doubts I’m trying to get in trouble hi this is Joe Lillian does always one of the lines that’s an accurate statement so tell me what you mean when you’re saying like you have to constantly follow the teacher at lake right the same thing again I do it I guess I Lonnie when I was in which our schools are just being on the line to take your phone and your attention we know what a line what are you what are you trying to get right do you think that you have to follow their instructions what are the instructions and what every day address to me just go to your desk okay do you feel like you you didn’t have the same liberties to hand it to resist that or to express any other kind of want like I feel like you know we go visit lambs class and kids are just all over the place and there’s lamb sitting at his desk doing what he’s asked to do and and listening and he’s the best behaved out of M. and I’m and my question is always why am I why am I made to fight so hard for this because it you know let him as he behaves in class is doing what he’s supposed to do because he’s never had a choice but to do anything other than that you know New Delhi that was definitely something you experience just because sometimes there were folks in those classes like mom said they didn’t want to be there and Jason was the only one who didn’t want to be there and that makes it kind of different behaviors sure I still remember in high school before I would go to every class I would go to work or Jason was supposed to be to make sure that he ended up in the right classroom because we we had multiple times where aids would forget said make sure he got where he needed to be or %HESITATION I forgot it was Wednesday and he had health class instead of gym and I’d be at the gym pulling it out to send them to hell so you know a lot of a lot of what we did really was together again like he did last night let’s kill I think a good example of like David they would only allow kids that were in the special needs class to take special needs jam which took them forever to walk down there for ten minutes a gym and walk out and Jason loves being physically fat so Jenny introduced him to what was at the football coach it was the cemex Arnett and Jason every year and Jason did no other gym with anybody else you want to miss Mr macfarlane and work out with him but the bubble tea so it’s kind of like every now and then you get a teacher who will step up and it’s usually not a special teacher it’s the other teachers who just don’t have preconceived ideas yeah we recently had a dance class or not that this was a really recently but we have a dance class it’s if it goes to %HESITATION and we were like well maybe Liam could jump in there do we need to maybe going there with them or do we need to hire someone to go in there with them and actually teacher and the guy ran the dance classes and fantastic man said no put him in there let him dance well and that was that was Jason how you got your first job we went into a pizza place Jason had prepared a resume do your first try give me the opportunity hang on my resume she was making fun of my sister seeing that your file %HESITATION hi how you doing exactly what happened so he so basically I called and said my brother has down syndrome is looking for a job you love pizza could he work at at your pizza place and the owners and I had no idea what down syndrome is sure I don’t care and so we went in we studied for this interview and the deal we made was that I was going to state and observe and just be there as a support person and yeah like you said it was the second day and the guy the guy he was like why are you still here he’s totally fine he he does he knows exactly what he needs to do with this job okay and he says we’re good to go and your job or what ten years now and that was probably the best job decent ever had was because the two of us walked in and said Hey like here yes here’s what you can do here’s what he’s interested in doing it what do you stock the drinks their youthful boxes for boxes I do the other thing we deserve a cooler a cooler so the other half of it after I tried with giant bosses argue with them yeah and you know it takes out the trash breaks down the box times as far as advocacy do you feel like as a Jason’s big sister have you always advocated was there a time in your life that you felt that shift to where you became aware of your need to advocate yeah I asked my mom I don’t remember the story my mom always tells the story when she came home from the hospital %HESITATION she was she was sitting outside and was you know we’re processing everything with ease and I was crying and I came out as a two and a half year old instead money why are you crying he’s just a baby and that kind of like to find my journey was chasing which ones were the only siblings and each other has I couldn’t tell you what it’s like to have a brother without down syndrome because Jason’s on cotton I’m all she’s got and so you know I think for us it was it was always us against the world when when he was little I I I subjected him to school and I used to try to copy as physical therapy and I used to spend my mom report cards based on our plan activities how will he did so I think I was a teacher maybe before I was an advocate for better or worse but you know I need to pull so our podcast is called if we knew then because there’s so many things that we know now as parents that we would it would have been so helpful and comforting to have known earlier in this in this journey let me start with Jenny do you have and if we knew then that you could share with us when I was younger I was often trying to sculpt chasing to fit into the world and I think as I as I’ve grown up I learned much more about scolding the world to understand she said and to and to learn from and I think that was probably the one thing that I wish I had had noted earlier is that it wasn’t about me trying to get you ready to get out there but it was about me trying to bring all of his value out into the world and for them to get right %HESITATION and and that’s really I think probably the the most transformation I’ve seen for myself as a sibling as as we grow thank you Jenny grace do you have an if we knew then statement for our audience I think my %HESITATION if I knew then would be to receive a congratulations project letter for my family %HESITATION so that I can personally read from another person with down syndrome and hear their words when I was younger and also for my family to hear it %HESITATION but I would have loved to hear the sibling perspective because similar to Jenny I think I wish I learned earlier on that I didn’t need to be that protective older sister of my sister with down syndrome %HESITATION because I learned early on she’s very capable of showing the world angel in the lab she asked to bring others wonderful grace robin I think if I knew then what I know now I think I would have tried to stay in the moment more I think we mark and I were always Jason’s number one advocates we were constantly looking for what was ahead you know looking for %HESITATION what was gonna be coming up around the corner for him ways to include him %HESITATION I think we are we constantly said let’s leave no stone unturned it was always like well you know this is going to be coming up we have to head in this direction and I think looking back now I wish we had worried so much about the future and we just kind of stayed in the moment and %HESITATION enjoy that a little bit longer yeah we’re always trying to just can we because we use that word fight we we said that we like to use another word but not only that because we’ve a jet we using the same word but we’re just just in our mind what that word means and I know that it’s a it’s a good fight that’s going to be productive and and that we don’t need to stress about I mean of course as much as of course we always get kinda fired up sometimes or well here so just yesterday we had someone’s say some that works works William in school and she said something that just was like well you use make mall group setting in a letter %HESITATION he works so well in the small group setting and I just went wait and it just became this long letter and I said it’ll be so nice when someone can go small group and I don’t put my feet in the ground because that’s happened before where someone will say something just off the cuff and it’s like oh he works along a small group and then the next thing you know two months later we’re looking at that same report same because of this this is what we’re going to do I think you always have to be on your toes because a simple saying like that you know it’s gonna and and like you said earlier there are families who you know don’t have the time just follow these IDPs and this and that and keep up with it and it it you know like you said you hate to use the word fight but you know they don’t have advocates behind them they’re going to put them wherever they want well like a lot of parents with children with down syndrome we’ve had the rug pulled from under us a few times and it doesn’t take more than a few times to make you can on your guard about things so but if we can go by your if you knew then statement and try to be a little maybe take take a little brass and we’re always working on that you know but also you cannot be on your guard still you know don’t let your guard down too much but yes you know I think this going through school is probably the hardest you now because I think you know slam gets older and stuff will start advocating for himself you know you want to give him the skills to doing that and I you know when he starts making the decisions he wants to direct as you want to go on and take your college courses just in my work and things that eases up a bit because you feel like %HESITATION you know this is his plan this is the direction he wants to go with his life but school is really difficult because I feel like they’re just gonna lead you down the path of least resistance and %HESITATION you know and you’re constantly on top of it so it is a tough time I think what’s been tough with school for for us is that we can as we we’ve lived in society for our our entire lives until having Liam so we we understand I can understand society’s angle and and how they need to change but I understand it but when you’re talking about an educational system %HESITATION and one of the best at every child and you see that the school system is set in these these ways that are from so long ago that aren’t aren’t being moved mmhm you feel like this this needs to be done now you know like like it way long ago all right so one other thing that you had said where you got out of the school system and you saw kind of push back that push is always there I do see that we’re making changes in our school and in in the investigation for hopefully for people behind us but I do I do %HESITATION I do see how that without that resistance it does pop back exactly and one of the things with this podcast that we want to do because we’re always seeing questions and were always seen %HESITATION parents taught from a point of view that’s so thank you so much for these things that it’s not a gift is not something that we need to earn and people earned it before us they went and they fought and they and they are not as of right and I don’t think people understand that it is a right to an education and inclusive classroom amongst your peers with the supports that you need to access your curriculum and we know that sentence and I just I want everybody to have that sense because it’s almost if you know that sentence and you say that sentence then they go mmhm they now you have to connect with other families and in your district %HESITATION chasing grew up with another young girl in Saxena age they went to school together we received %HESITATION psych report where all the compounds where she she I happen to speak to the parents our lines were split like my first sense was her last sentence he had basically taking to individuals who both had down syndrome and wrote the same report and you know had we not communicate with each other because I said you know he was harsh because it was like you know because of that his disability he will never do that I’m harsh comments and we had thrown out and we never tested in school again we were like you know we have the right to do outside testing I never you know because they’ll take the quickest one sometimes let me ask you a question for each of you because you guys have already been on the road so much longer than we have what are the changes that you’ve seen the most and what do you want to change what what change do you want to see right I think overall opportunities have opened up I think %HESITATION the opportunities for continued education for individuals you know with down syndrome the opportunities for independent living we’re in the process of setting case that would remain in his own apartment so those things are changing I think that’s really good to see the problem is the people you’re dealing with sometimes still have their preconceived ideas so in the process of setting up and it you know independent living you’ll still meet up with people his opinions haven’t changed much so %HESITATION you know I think maybe there’s a delay in the catch up with it but %HESITATION but I do think opportunities are certainly opening up you know especially for young adults and I would just liberating and and she’s gonna talk a little bit earlier about attitudes as really the thing that %HESITATION she thinks you know needs to change the most I think we’ve seen you know J. sends like now before it was really school focused when he was younger and now that we have the ability to kind of live independently choose pals to be able to identify friends and communities that are C. I think that that’s become something that we’ve been able to see change just in kind of his age range would you say that’s right and I and I think I think kind of from a talent perspective I experience that as well when we first started we had a lot of siblings who are volunteers and it was still too kind of we’re already in the community now when we look at the people that we’re bringing into our programs it’s folks who I’ve never met someone with down syndrome before who heard about this is a good experience or something that somebody said you gotta try it and they’re coming in and learning things they never imagined to learning everything new you know they never even knew someone with down syndrome before and they’re stepping into this world with us and saying okay I’m ready and so I think that’s something that we’re that we’re kind of seeing as it was colder I think something that I would like to see changes perspective similar to what Jesus said about attitudes I think that the world needs to understand better %HESITATION what people with down syndrome and disabilities are capable of and when we go to calls it something that I really see %HESITATION we take track like day trips %HESITATION with the whole group of people and I always noticed people coming up to us and saying like what is this camp like what are you guys doing I’m always sending our foot in the right direction I feel like people see us treating people with down syndrome just like our friends and just like our other peers and I think that is paving the way to changing these perspectives that we want to see an oral well Jenny it’s ed mentioned seen volunteers that really didn’t have a lot of experience with down syndrome prior to volunteering there remind me of cold story earlier it cold you want to add something to that yeah definitely I I think just the idea of inclusion is so important and its inclusion is such a a buzz word nowadays and I think a lot of people no %HESITATION what it means but you can’t fully understand what what inclusion is until you clicked it and I you know I I knew what the word meant before I came to pals %HESITATION back in two thousand seventeen but I couldn’t fully grasp what what it was until I die you know made genuine friendships with individuals with down syndrome Jason was one of my first friends that I’ve made with down syndrome we spent an entire week together paired up at camp and it was completely transformative for me you know I I was able to have a lot of meaningful conversations with Jason where we found shared interests and you know just really just really connected on so many levels and it it helped me to internalize this idea of inclusion that %HESITATION we are as you often hear just so much more alike than we are different and it was a really meaningful experience when you say transformative can you give us insight into how it was transformative I think %HESITATION prior to my experience of pals I I would I wouldn’t shy away from conversations with strike particularly with individuals with disabilities but I think that it goes even farther you know outside of any individual who %HESITATION is different than ourselves are different than that is that what happened okay join the recording I don’t and not like since since I’ve experienced since my first week at Hauser I made so many friends with down syndrome I I seek out those connections are often with all all types of different people people from different backgrounds on my own and it’s really just it’s inspired me a lot to to make those meaningful friendships and trying to find common ground with stocks does a really great note to go out on Colton and and some real good food for thought because it’s not always easy making those first steps and I think you guys do great stuff I’m so excited I was so excited about this letter because I think it’s so needed and I hope everybody reaches out for one yes thank you so much thank you we wish you so much luck with the growth of the program we are looking forward to a southern California camp open up real soon and it was just a real pleasure getting to talk to you all again take care have a great evening.

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