19. PALS Programs – Congratulations Project

Transcript

hello and welcome to the if we knew then podcast I’m Stephen socks and I’m Laurie socks and today we’re joined by members of the pals program has program is really cool and I think you found the program online and what it is is they have inclusive camps all across the country all across country and then they do this incredible program called the congratulation letter and I love that it brings celebration back to expectant mothers of children with down syndrome because of some of that celebration gets taken away with a diagnosis or with preconceived expectations or lack of expectations from people around us and this is the opposite that’s right and we can we’ll learn more about the program and about the letters and who writes the letters and and how it all came to be which is all so very exciting you had this one on your own though this is all this is odd this is odd because %HESITATION Liam woke up with an ear infection so we took him to the doctor and so I was not part of this tonight and I mention that because as we were discussing this episode %HESITATION that’s just part of that’s part of life having children period and it’s just something that that we do we roll with the punches and what I’ve learned when Liam who doesn’t always really complain until it’s to a certain point so he won’t normally say he’s uncomfortable that a little tug of the ear or wait for the I and I go in there and I start to examine and before things get too out of control so Steven had this because I was taking him to the doctor and you were missed good it’s good to be with so here we are our interview with the pals program hello everyone thank you for joining us Alton would you like to start the introductions yeah %HESITATION I’m Colton what’s somewhat in the flesh I guess missions coordinator at a to all the social media graphics and writing and stuff I’m do you guys want to just go around and say who you are what you do and all that good stuff yeah I can I can I’m Jenny I served as the executive director of one of the co founders of houses well most importantly sister over here so some green system no I think I’m your sister on December eight and iOS OS yes since this year %HESITATION I have down syndrome yes so I’m gonna be here yeah yeah yeah universal where I could work you probably get simple there right yeah you know some people keep yourself yeah I’m robin I’m serving as a mother can you get a sense yes hi I’m grace %HESITATION I’m the congradulations project associate so I do everything for the congrats project %HESITATION and I also have two siblings and my middle settling has down syndrome so that’s how I got involved in house well for us we were not down to dramatic it’s until ten years ago when Liam was born things come to the forefront of your life and you see injustices and you see inequalities you see misperceptions and you think yourself this isn’t our story this isn’t how things should be and so you ask how how do I rectify that and when I came upon the pals program the first thing I saw was the congradulations project and it really was so amazing it was something that we wish we had had ten years ago it’s a way to send positive information to to people it’s what why we’re doing this podcast and I know it’s just part of the pals program but Jenny tell us more about the house %HESITATION we’re nonprofit that create inclusive summer camps for individuals with and without down syndrome our camp programs are all volunteer let so let by young people I’m designed to change attitudes transform lives and inspire world %HESITATION during camp so each of our campuses cared one to one with the pier age filings here and together they spent a week on a team enjoy your adventures exploring a new city and having some some new shared experiences are all gonna be long programs are held on college campuses and they provide opportunities for our campers and volunteers to explore local city are demonstrating collusion to the community so ultimately our goal is kind of to be able to inspire this world of belonging and so we believe that those friendships and that %HESITATION just inclusive aspect of our program is able to do that well I don’t think it should go unnoticed as hearing that that these camps happen at a university I think that’s pretty amazing because that’s something that when we found out Liam had down syndrome that was one of the things that kind of like was thrown out the window for us you know by all around us just that that just %HESITATION that out you know and %HESITATION it and we’ve come to realize that we don’t have to throw that out that’s an option as with anybody it shouldn’t be overlooked where are these camps are happening yeah no absolutely and something we feel really strongly about you I mean we use universities because they’re so closely tied to the communities so that there are a great resource there but I completely agree it makes the state makes a statement our group belongs in the community that we belong in higher education space that we have something to learning something to teach others %HESITATION and and so yeah we have %HESITATION gosh last last summer we had seventeen programs across the country serving over fifteen hundred campers and volunteers so we have programs from Philadelphia to San Francisco need to Chicago eight different states and so you know it’s it’s been our privilege to grow but absolutely using university system really well for us but the origins of pals is in Pennsylvania correct correct we were founded in Philadelphia in what year was that in two thousand four was our very first car well you’ve made such progress my goodness yeah it’s certainly something we didn’t expect I was fifteen when we first found in the the organization and we had sixteen campers and volunteers I have no idea what why anyone thought it was appropriate to leave their children with us on a college campus I never would have done it but yeah and and you know we just continue to grow and grow and in two thousand twelve we began to look at new locations to see if we could build beyond Philadelphia and and since then it’s it’s just been a wild ride I’m not only can’t pursue football and you’re also being able to to just testified how much of a transformative experience it really is %HESITATION and and yes just in total privilege to be able to to grow this organization over these years well when did the congradulations project come to be well how did that happen yes so honestly the best way to hear about the congradulations project it starts with the story from my mom %HESITATION and really kind of my brother’s diagnosis and how that all happened so maybe mom if you want to share a little bit about that and how how that came into the world make it a little bit more perspective on the second piece %HESITATION I guess our story begins when Jason was born we did not have a prenatal diagnosis even at the time he was born no one seemed to express any concerns we figured everything was fine %HESITATION we did notice we only got to hold him a short time and it was still away they said they had to check his vitals %HESITATION no it’s temperature checks we noticed there was more medical staff around him perhaps but nothing that would you know make us think anything out of the ordinary really %HESITATION my husband stuck around for a few hours and then he headed home because Jenny was about two years old and so she was home with my parents so he had to help share the news with her so I was pretty much alone when %HESITATION the pediatrician came in to do the morning rats so %HESITATION I remember he sat down and the first thing you said is there’s a bit of a problem %HESITATION we suspect that your baby has down syndrome %HESITATION he quickly launched into a whole long list of medical issues %HESITATION probably carried Jason from birth through his whole life %HESITATION and tested they would need to run %HESITATION I don’t think I process much of it at that point I think %HESITATION I remember feeling overwhelms worry anxious to connect with mark since I was alone at the time %HESITATION following his visit a nurse came into the room and %HESITATION she told me I had options in her suggestion was that we do not have to take the baby home which you know I kept thinking what’s going to happen to the baby and she quickly followed that up with you know that babies with down syndrome are high need option list so I think that was probably like my lowest point and I think the only thing I know at that point was there was no way I was leaving the hospital without Jason %HESITATION the next morning any pediatrician came in %HESITATION to cover our pediatrician first words out of his mouth were like congratulations and you need some and he said before I address any of your concerns or questions I have a mom who would love to come up and visit you guys she has a young son six years old with down syndrome and we were like absolutely you know I would welcome it I remember she writes she had a photo album or song %HESITATION it was actually her son had turned six years old on the day she came to visit me so just the fact that you showed up yeah now on his birthday %HESITATION it was amazing she showed us milestones in the book she answered questions and concerns silly questions like you had mentioned like you know what about college what about this I mean we were even like I can be able to do sports or anything %HESITATION you know silly questions you have but I think that for mark and I that was the turning point where we could see Hey there was a future out there for case so %HESITATION as years went on and we continue to get more involved in the down syndrome community what mark and I noticed is that our story was not a unique one and that many other families had similar experiences so I think your feelings are there really isn’t enough being done to change the way family receives a diagnosis %HESITATION and I think that’s why the constant regulations project is so important to us I think from a parent’s perspective we feel like connections like this is what gives you the help that you need you know for the future for our kids so that’s kind of how we started listen to me thank you for opening up on that story because that is I think an experience for so many parents the first part of of the experience and you saw exactly how having some kind of insight and some kind of touch with with some as experience it can can relieve your stress is and and and make you understand that maybe there’s not as much to have to stress about I want to tell Jenny that the congratulations project is therapeutic for me because I’m the one that gets to distribute the gifts in the packages and choose letters and such so %HESITATION every time I send a letter out it just takes me back and I just feel like I hope it gives them a sense of hope that we you know need it back then how many letters have been sent so far so great if you want to talk a little bit about how many letters we send to where they’ve been down yes sure so we went over a thousand letters %HESITATION to date we’ve had our biggest year and this year actually %HESITATION and at each PA’s programs we have each camper write a newsletter %HESITATION so we send out a new letter to each family and they all start with congratulations I’m so once we have all these letters we scanned them all and and we read through them and then we added texture of the individual out pals and size request command we pick out a new letter to the family and then many families include notes and two with additional details about medical or their civilians %HESITATION and this is just more information that we use to find the perfect letter for that and we also sent these letters to you forty nine states right now and then forty four countries across the world okay what state has me covered we gotta do that right North Dakota we’re waiting on it shout out to North Dakota please thank you grace you know Jenny I see you and I see your brother there with you and it reminds me of my daughter Sophia who is two years older than my son Liam and I always think of how how she’s developing as a as a young lady and how Liam and our experiences have changed her changed us all for the better I would think Sylvia’s got patients that I never had as it as a child and and also a feeling of protection and advocacy Jenny tell us about your relationship with Jason yeah you know %HESITATION it’s pretty good pretty good relationships no you know I it’s been really fascinating reflecting in thinking about this podcast you know I grew up defending Jeez I you know my job was to make sure that he was protected he was defending it and that he did everything he needed to do to kind of stay in %HESITATION and even when we created pals in my head camp was going to be this this kind of space space place that I could create where is he with the state and it’s interesting because now as we’ve grown and as time has gone well I I learned that the impact of the house is so much more beyond creating a single place where campers feel safe but instead it’s about enabling our campers to have this transformative experience our volunteers that they are able to transform perspectives and and honestly changed the course of people’s lives through their relationship and just %HESITATION just who they are and and and that’s really been my experience with chase and you know I look back and I seen all of the ways in which she scolded me as a human being whether it was with his humor or he’s just genuine ability to call me out on my stuff but you know but also even just this desire to to recognize that she’s not the person who needs to change but it’s the world that needs to change and really that’s what that mission of powers that concept of inspiring the world belonging you know not just creating a place but creating a place that inspires people to want to go out and make the world a different and better please and I think you know that’s really what he says that’s that’s you know that’s been awfully stories together is kind of changing the world has to teach %HESITATION and and you know I don’t I honestly have no idea who I would be here what I would do if I wasn’t she said just like mine my most defining characteristic in life and so honestly having that having that be like my life experience has been great plus for sure what a gift growing up I didn’t have any personal experience with down syndrome I was told things about down syndrome but I didn’t actually have any experience with someone with down syndrome and as you said Jenny as these experiences happen and you see people have never really had experiences with people with down syndrome it opens up these doors it opens up this idea of yeah we’re not so different right and I think that’s so important and I and I can see how the pals is doing that %HESITATION when we go back to the the idea of the congradulations letter have you had an opportunity get any feedback from the letters %HESITATION we have we really love %HESITATION hearing from our letter recipients it’s awesome to hear their stories and then share that with the pals community I’m actually when families received their letter they have an option to respond to their letters and then we send those to our authors %HESITATION are individuals with down syndrome from pals and then often we also receive %HESITATION pictures of the babies that have received the letter %HESITATION and sometimes they’ll be in their future camper one seat which is really cool to see %HESITATION each family receives this onesie and entitles them to their first camp house for free just an awesome part of our project I think yeah and recently we had a family saying when they received their letter it was like a light going on it for their family and they expressed on how excited they were that one day their daughter gets you out of house that’s wonderful I am and these are all physical letters mailed to the post office no no emails right people are still one via email but we send them all out through the mail how how how would someone listening to the podcast who maybe just got a diagnosis or just wants to know more or how did they contact you or how would they go about getting the letter so family is %HESITATION or their friends can request a letter on our website and there are of no cost and they include the letter and then the one seed along with some of our house bracelets and so we’ve been doing lots of medical out reach and down syndrome organization out reached you further %HESITATION reach more communities in that are receiving the diagnosis I’m so hopefully we we help with that that’s the idea right definitely a lot of it is word of mouth to %HESITATION and sometimes even our pals community well your diagnosis and then go on our website and request a letter which is awesome and that website is %HESITATION congradulations project dot org and I will definitely put that in the show notes so the easy to link onto her robin did you have anything you want to save time on a little bit with grace is saying we also do get people whose young adults are they’re young adults or they could be five and older just looking kind of our penthouse sometimes too so we trying to improvise a letter out to them %HESITATION you know so I think there are people who you know are cast the infant stage but are still working to connect and actually they save the letters they say the monostable letter for when your child gets older to read it themselves and hopefully connect on that one Justin’s I think that’s something that is so unique about the project in and of itself so these letters are are only right now hal’s %HESITATION and they’re reading during this transformative experiences this opportunity for a week away from the real world in a place that is genuine and accepting and supportive and handing the you know pure and genuine stocks of of campers and young people with down syndrome saying this is what I’m proud of this is what I’ve accomplished in my life this is what my future hopes and dreams are I think that’s we’re just like the core horror of this project license in these in these on adults heard unfiltered words directly from our self advocates speaking directly to these new families and I think that that’s something that really sets the project apart as well is something that you can touch you know it’s something that you are holding on to a piece of paper that someone took the time to write that was at your facility and and it’s it’s kind of an old school thing that’s why I kind of mention but it kind of does now we’re kind of going old school but I mean a podcast is old school I was taught to Loring a what kind of gotten back to old school radio you know circle but chasing could I ask you as an adult with down syndrome can you talk to us a little bit about your life about what you would want people to know about you and and down syndrome I was born in nineteen ninety and that was when my mom was all about something like congratulations project on a land mine on April having down syndrome was especially hard in school because I was rudely I was easier with %HESITATION that creation and camp stuff I learned to be an advocate I have had jobs afternoon June wellness center hamburgers pizza although I miss them all now with covert I like baseball and then the survey in July fourth I’m upset she captioned Merica I want to see people with down syndrome can share their Norwich we can independently cook food and still understand that two oh my goodness I think the thing that needs to change the network this POS our team is %HESITATION what monster you babies have them look at the Petersons and then have them look at each other face to face and St rock doesn’t have maybe you know watching chasing grow up and and learn at the to see kind of along the same side along the same path as me has been something that’s kept us close and siblings you know we learned to talk about down syndrome at the same time we learned how to speak in public and share our story at around the same time %HESITATION you know we’ve learned the impact of pals at the same time I remember one of our first %HESITATION speeches that we did together descend I was preparing to go on stage and I said okay you know what are some of the things I should say Jason Segel you should talk about how he does have down syndrome we yeah I think I was I don’t and I was like you know we and he was like well you know we do all this stuff together well who doesn’t matter which one of us has down syndrome and that’s kind of how it’s been you know it it doesn’t matter which one of us has down syndrome and an advocate for each other forever and being able to be in a space and be able to fight for a world that we both leading %HESITATION has has has been a really cool processes thanks for sure hi I know it’s more than just down syndrome but I see so much like I said Jenny of my daughter and you and I see robin so much of of Laurie and I in you and I’m so glad we’re talking grace can you tell us a little bit about how you got involved in pounds and maybe your experience with down syndrome so %HESITATION I have a younger sister with down syndrome %HESITATION she is seventeen now which is a little scary but %HESITATION she originally went to pals act for her but first summer when she was I think thirteen and that was about five years ago now and then in that same summer I decided to go to pals after she had an awesome experience %HESITATION and I’ve been going back ever since %HESITATION I volunteer every summer because I love it and I truly believe in everything that pals values and creating a world of the long and I can really resonate with Jenny story on being a civilian I’ve learned just so much from my sister %HESITATION and she’s I don’t know who I would be without her today so I’m really lucky thank you grace Jason to get back to you %HESITATION when you say Captain America well he’s a big part of our household yeah it used to be just Star Wars and now captain America’s come through and so when me and hopefully walks through the door hill hills can show his cap American teachers most probably wearing we have to get dozens of them so you don’t have to do as much watch you have to tell them what your go to help cities for the town’s sessions which are kept in constant at my %HESITATION what I’m going to see this past Christmas training team yeah he’s got it all had to tell Captain America costume and likes to bring for the fashion shows that we with this kind of fun our reasons if I didn’t do it our way he was in July fourth it would be more easy yeah we got to get it to align with the holidays will be Captain America on the day we celebrate America the reason independence thing yeah he so one of the ways in which your star G. St in your being in the congradulations project where one of your letters was featured to chase and %HESITATION Jeez and my daughter on the cover of the congratulations project look great maybe you want to talk a little bit about what that is and how that’s another vehicle how were you able to share letters %HESITATION in twenty eighteen we created that congradulations project book and Jason’s featured in the book %HESITATION he’s on the cover like Jenny said but each page has a hand written letter %HESITATION that we stand in the book and then it has a picture of the author that wrote the letter as well so we’ve been trying to put these books in medical offices and hospitals that are receiving or giving the diagnosis in order for more families to come across our project and hear the words congratulations from our individuals with down syndrome house the main way to get that book is to be at the office or is there another way they can receive the book we sell them right now on Amazon and then throw website %HESITATION so you can purchase the book on our website and then we also distribute distributing them to hospitals and medical offices like I said actually since project dot org is the best place to send everybody that’s that’s awesome I want to see the book and that’s a great link to like I talked about earlier about were active on some Facebook groups and sometimes people reach out saying I’ve just maybe even not a diagnosis maybe just I have a really high chance now and I’m now joined this group because we’re worried we want some answers and I’m always looking for new things in new ways to send people because everyone’s got their own little thing they want if it’s not a movie or a podcast or an article maybe they want a book especially a book like that where the baby is not coming around to get the letter now but they can see an example of all the letters yeah that’s that’s been a really great way because our letters are sent individually to new families that congratulations project look has been a great way for someone who says I just want to learn more I just want to see these letters I want to put this book on my coffee table %HESITATION it’s been a really really great way for us to grow our outreach a couple years ago we received some funding specifically to donate a bunch of these boxes so we donated three hundred of these books to people all across the country who requested to bring them into their OBGYN to the genetic counselor offices to stay in hospital waiting rooms are we even had one of our campers who brought this book to the OB who actually delivered and said you know and she was an author in the book and said you know you brought me into this world this is what my life looks like now so there’s just so many meaningful stories that are are captured in not looking %HESITATION we we have an organization Northern Ireland that’s been distributing them in mass quantities to the hospitals we shipped I think almost a hundred books out to them %HESITATION so it’s been a really really cool way the individual sending letters is so personal and and that’s and that’s a powerful statement but the book has been a way for us to just broadly reach folks who want to learn more and what I understand you know what I understand the different stories and want to hear the stories in people’s hearts I called I don’t wanna leave you out I want to see how you got involved first of all you are so great and in reaching out and getting everything organized through the whole thing so I want to thank you first yeah but I don’t want to ask about your experiences sure %HESITATION so I I is similarly to to what you said at the beginning of our discussion I had very limited experience with anyone with a disability or down syndrome for that matter and I kind of got involved through a series of a series of events that led me to where I am today %HESITATION I really wanted to work in nonprofit work I really wanted to work with volunteers and I was kind of willing to go anywhere and do anything %HESITATION and they’re all kind of came to a head after my experience as a Peace Corps volunteer %HESITATION and so I decided to completely change my career path and I stumbled upon a volunteer %HESITATION position I want your support position with pals and you have to cross the country territory elsewhere from Montana which is where I’m coming here today %HESITATION moves all the way to Philadelphia to start this position and similarly it’s just been a complete life changer for me you know I I stands that first summer going zero nine different camps %HESITATION all throughout the summer and it was incredible just you know after after meeting hot literally hundreds of individuals with down syndrome %HESITATION the transformation that occurred in me over the summer was was incredible in that span of four years ago now and %HESITATION it’s one of the best surgeons that ever made with my life thank you Colton Janie how do you facilitate so many camps during the year how how does that work out well I have a great team I was cold and grace are are a big part of I %HESITATION we so we have a staff full we have a year round staff but really all of our programs are designed and led by young people as a kind of standard beginning so we have program directors and those are %HESITATION sometimes dealing with people with down syndrome sometimes volunteers who just came into our community and how their lives changed one of the best work time but there are folks who have gone through the house for a couple of years and now want to spend a year working as a volunteer to build a specific camp next summer and so we bring in a new group of directors every fall in September bunch of people apply we select and assign them to different camps and then my team supports them through the entire process of designing a program selecting the activities selecting reviewing camera Mullins your applications making pairings putting teams together and then putting the program into action and so a lot of our work has become a ram used developing his leadership within these directors as well having the ability to sit with a group of people who want to dedicate ten fifteen sometimes twenty hours a week to making this opportunity possible for others after the experience that I had been changed by in the past so really our work would be impossible without without those volunteer directors are key part of our mission and as as a young person like I said I was fifteen when I first started camping %HESITATION the opportunity in the skills that you could skills that you take from building that type of experience in the pride and a sense of accomplishment you get after that we just completed something that it’s not hard to describe and it’s a a great component of our organization to be able to facilitate these leaders into being being able to do that every year so that’s that’s really how we make this program possible we’ve got eight weeks of summer and seventeen camps that go across all of those eight weeks and we are in every which direction and %HESITATION close gathering social media from all different sides of the country at all different hours of the night and stuff it takes it takes a really solid staff team but also a phenomenal group of volunteers who want to make these camps thank you for all that hardware you’re really making a difference we look forward to talking to you again he’s follow us on Twitter at if we knew then pot you can drop us a line on our Facebook page at if we knew that pot or visit our website if we knew then dot com to send us an email with questions and comments you can join our mailing list there and get alerts of future podcast episodes all these links will be added to this episode show notes thank you again and we look forward to you joining us on the next episode of if we knew that

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