18. Project Understood – Part 2 – Two Perspectives of Down Syndrome – Ed Casagrande and Matt MacNeil


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 Ed Casagrande and Matt McNeil from the Canadian Down Syndrome Society who has a wonderful initiative called Project Understood.

If you’re unfamiliar with Project Understood we do have an episode where we interviewed them and they discussed all about the project and their collaboration with Google A. I. and bringing the Down Syndrome community to the table and making this A. I. technology more accessible and by doing this technology is going to do IT technologies and therefore and that is to advance the lives of others and take give supports and it’s really exciting because what it really speaks on his inclusion and a changing world but today our conversation takes a more personal turn what kind of get into a bit of a deeper dive with them personally can’t talk about their different experiences with down syndrome Ed is a father of a daughter with down syndrome and Matt is an adult with down syndrome.

So let’s get started.

Matthew and Ed thank you so much for joining us on the podcast again today

Hello everyone.

Thanks great to be here.

Let me start with you Ed, what were your experiences with down syndrome prior to your daughter’s birth?

My knowledge is very limited you know they’re not they’re wrong going to school there wasn’t someone with down syndrome that was in my school that sold my only I guess looking back you know there is a one person at the church and I went to growing up and I would see people in in in my home town with down syndrome you know that’s that’s all I need and you know like I said there was really no sense %HESITATION of the ability was more about all that person’s not like me and the turning point for me after having my daughter was gone so every year %HESITATION %HESITATION in the past the command down some society does a conference every year where people from all over Canada come to to the conference for over a weekend and that was you know my first conference I just joined the board and %HESITATION I was actually working the Canadian down syndrome society looks like there’s a number of booths kind like it’s Rachel cell format and I was sitting down with %HESITATION Nick who’s one of the members of the vanity %HESITATION at the time he wouldn’t in early twenty S. and you know this is really the first time that I actually sat down and spoke with someone with down syndrome who is who’s an adult and you know this is like my daughter and she would have been like four months old five months old and that call never forget that conversation because what I learned from the conversation you know after talking to Nick for over an hour as he wants the same things as anybody else we know we talked about music you know we talked about girls and you know you talk about wanting to move out and get married and have a girlfriend and and you know getting close to a girl and almost kind of things and it was like morning that was a typical conversation with I could have with any twenty two year old hello hello world it was there so to me that really just open open my mind and say you know what similar to a typical person neck in that case one has the same rules hopes wants and dreams has anyone else and you know even spending lots of time with Matt over the past year with with project understood no very same same feeling in terms of you know Matt wants a paycheck you want to pay taxes he wants to live on his own he wants and relationships it’s it’s the same as anybody else Matt first of all I I love as a parent and I’m gonna come more away from the technology side as the parents side of of our podcast because I have a lot of questions myself whenever I’m watching just with all the changes that are going on and I just I want to say that I I love that you’re out there and people are seen at as you said Matt has a job he’s had it for twelve years and Matt rides his bike to work and I and you know some of my frustration is apparent sometimes will be that this is a surprise to people %HESITATION and that can be if I can’t I can’t imagine your experience Matt if every time I did something people were blown away by it so that’s my question if you know if you could talk a little bit more on your experience even when you were younger and and went to school because I know things have changed since since you were you know an elementary school or middle school or high school and maybe you could talk a little bit about that because I personally find it very interesting yeah it current remember that there are different things that I thank you for I met the guy friends right now the kids are after I learned that I didn’t run down is trust match during mass and stop we are the game I get my mom and my step dad and then drop me out your doc now a new back nobody knew what that meant the way I did the dot last in class and they saw me well during their luck getting changed what you have to you Derek during dot now yet you have that they told me that he G. back and at that point they were supposed to provide that the way you do about it that way so I’m a great friend during that in other threads now conduct moon said that they could change my life you really helped me a lot in your care don’t change yourselves and that’s where I come from now children that do not F. may group people are infected back when your kids yeah that’s a great example where you know we just needed to be talked a little bit differently %HESITATION to you know to adapt to the way Matt learns and of course you know he was able to to learn so it’s still having that awareness that you know as I mentioned you know people %HESITATION maybe need to be taught in a different manner using a different resource or warm visuals and words and make your picks it’s it’s we need to kind of think beyond there’s only one way of doing things and speaking of school like even that he went to college in a live incidents so again when I when I found that %HESITATION you know as a mental or it’s like wow we don’t want to hear things like that it’s like okay well my daughters you might not know that my daughter can can live on our own and go up on our way to check work work schedule and and and go to school so it’s a severity very comforting to see that and that’s you know one of the roles of of of the Vatican I spoke about before remote sense on it it’s to give inspiration to the specials new parents who you know they’re just they’re going through Watson her head in terms of what the future holds and what you know what will you know what what what’s going to come out of all this and singles real life examples it’s been very motivating and and I I am going back to that first conference I went to my daughter was was was four months old at the time we had two kids but seeing families where you know you know that had people down soon and typical people interacting and siblings and sibling rivalry it’s all the same I can you know whether whether you have doubts or not you’re gonna be happy sad you know fight with brother and sister you’re gonna I don’t want to watch something on TV so the scene that interaction was like okay it’s this we’re gonna be just like any other family and %HESITATION well turn okay so it’s just but we need to continue to raise awareness on the abilities and what someone down syndrome can do versus what they can’t do so that we wants to help raise the bar in energy bills bills larger milestones concern about long ago where the bar was a very very low so we all can appreciate the bar has risen and there’s lots of opportunity for it to go even higher I think what is so great about seeing these examples because I know it when my son was born there weren’t a lot of examples I don’t even think no I take that back there were really no examples out there because I went I did research and there was nothing very hopeful and I think what having these examples to where more people see the capabilities and the changes I think it’s more the change of perception then then the abilities because I believe that the bility as well always there it’s just how they were limited in society I think that takes away a lot of the fear and and what I experienced as a new parent was not not only just the fear of being a new parent like I was with my daughter but there was so much unknown and the only known was stuff that really kind of put fear in and our hearts because it was limits and I and I love that you know you that’s one thing I said to my husband when lamb was born as you just like said Sophia it will go to college if she chooses Liam’s gonna go to college if that’s what he wants to do but it wasn’t a norm that was out there it was something that you weren’t given that how you it was almost like I was stomping my foot in the ground and it shouldn’t be that way no I even for me it went when Laurie would say that I I went O. okay I mean but did I really believe it not initially because I was brought up to think of someone down syndrome as limited I wasn’t Lori was not so she really has brought this great positive attitude that is only gonna you know if you if we told our typical dar that you’re not going to college because she couldn’t it because you’ll be unable to do it then right there I’m limited her and she may not go to college for that very reason so having these positive attitudes and telling everyone what they can do just like how you said Matt what can you do not what you can’t do that’s going to really make everybody rise to that that higher barred you talked about it yeah I think it just goes back two and again the supplies to %HESITATION everyone is just you know not shutting the door on people and and he does opportunities where doors are open so that you know someone has the opportunity to to see what’s on that the only on the side of the door they’re you know going back to I don’t know if they can build the future all the time I’m hopeful as well you know and I don’t Leon you said Leo was ten years old yes yeah so you know my daughter among six so they’re gonna go through school for the most part very inclusive classrooms and they’re surrounded by peers and classmates and friends too you know I’m hopeful that they see Emma as outlined not you know and with the down syndrome kid but those classmates lost friends who were very young right now there are future leaders they’re the future boss is there in the future HR departments and I’m hopeful that tell them it is it’s they will not be a great leap I’m hoping it happens one sooner than that but it’s it’s it’s not a big leap to to be diverse into being close and you know beyond school %HESITATION specially when it comes to work because I like you know there’s lots of opportunity there I thank you know today a lot of companies he’ll then yes you know we need diversity not only from you know physical %HESITATION look you know just all all walks of life but I think a lot of people held up on the how how to do it you know what supports are in place to to get that done so I’m hopeful that we will overcome that %HESITATION you know that’s a huge area that you know I’d like to like to see so some progress made on I agreed and I think that’s the that’s the whole advocacy for inclusion is because it does start at the foundation of having having society just be inclusive so everything is accepted you just accepted you’re just it’s just there and let’s start from the even playing field as we are who we are and everybody is different and everyone has some to contribute right at that can I ask you when you were in school did you attend and an inclusive classroom hi yes many times right yeah every day that a mass and that there are a lot of stuff that you don’t they now I do now but I’ve got stuff that I get there I can do before when they did I loved it how did you feel going into the inclusive classroom or how were you accepted then what was that experience maybe you’re right you have to have threatened then you knew me maybe that’s the model of the reasons why but but then works with what when I was driving goods are where I make a change but I started to work with great council and I did one little word that made everybody thought who went down the microphone and I said my speech I said I might be different but I could make a difference and that’s where you know it everybody in the correct score said wow Matthew thank I made my day that makes great character that way IBM yeah hi my ability thank you for I hope you don’t mind if I steal that motto I may be different but I can make a difference that’s fantastic really concrete that one trade market make a teacher right up Matt what what college did you go to well I’m I’m in college hello Peterborough Ontario which is a boat all throughout the race yeah two hours east of Toronto Ontario and and what did you study in college four in that car they had a a crash course yeah he Corp integrated through coop education car we’re going to throw out wrecking need your correct correct yeah so like you know men’s college like that’s from his house to be like four hours away so we’re not talking like right around the corner from from parents sells for they can check on that he was he was a far away and he got it done living on campus right there on campus going to bus routes can I ask a little bit about your experience going into going into the classroom how you a college yeah and college LA LA you talk on what that experience was like when you first went for a first rate Granger Croft master didn’t know anybody sure are I’ve written a student young T. floor if you’re making me talk me I talk to Graham now %HESITATION signed up were like best buddies with him right in there who was my best buddy be able to talk to you and there are so many what trends docu and you in the right path of who I talked to a guy help home construction what was that what was the reception where teachers surprised or were some of your classmates surprised that you were there or about your abilities yeah exactly some of the classes that I took from those talking about down syndrome well my graph makes and %HESITATION what does that term may serve that can talk to their classmates in turn are what really is and %HESITATION I was happy that I could give them good information to our doctor and wives in fact the area a friend who can help me with the project and our topic is to really turn over at the %HESITATION great project you know the day man has a very engaging personality as you can probably tell and and %HESITATION you know he’s easy to talk which he you know he he can joke around like the best of our legacy is a big sports fan you know don’t get us started on the Toronto Maple Leafs hockey team so like you know it’s it’s easy to have a conversation with lab so I can only I haven’t I was in there when when that when the calls but I can just only assume based on how I know what a noble man how I how I know that that you know he would have no problem talking to people interacting and making lots of friends so I can you know when he when he talks about you’re breaking down some barriers I can see the holes barriers going down very early in the tennis when he went to college and you know they saw Madison at versus something else correct %HESITATION project without asking to do a R. S. H. slash my throat I would like to work very well downstream failed right I will note here okay and now we’re into a good essay and %HESITATION R. I. during did if you have a have a neighbor going on in your life because of that the FAA are lacking your blog for the Kenny down syndrome %HESITATION that’s fantastic I love to get a link to your blog I took I would put that on on the show notes they want to be that and going back to project understood this technology will help people blog as well we always like to ask a question to our guests the podcast is called if we knew then and it’s it’s from a parent’s perspective usually %HESITATION just usually it’s it’s I wouldn’t of worried so much in the past if I had known things and that’s probably universal in any in any capacity or any subject that you’re you could talk about an experience you can have but maybe I can direct this to add first would you have and if you knew then statement to make a good question %HESITATION if I knew then well things are going to be okay in that find it funny how at the beginning of the journey you have all these questions and the unknown in a it’s just human behavior possibly and also just the information we have the unknowns sometimes so scary and when you have sometimes negative input or negative information that you get to your mind even expands that makes it where you really fearful and I believe that all this positive positive things that were put now that the project is putting out is really going to change the initial thoughts of her parents in particularly when they find out they’re going to have a child with down syndrome yeah and in fact you know that was really the first campaign we did you know three or four years ago called down syndrome answers where you know I can go through my experience is very similar with a lot of people’s you know once you find out whether you know %HESITATION prenatal or adverse you know it’s a city to like a brick wall because you didn’t expect it and then when you know you go online and you search for answers and you get a wide range of information and you know someone a lot of it focuses on the limitations versus the potential and so we created a campaign called Johnson ranchers were we actually looked at in one of the most asked questions on Google when it comes to down syndrome how long does a person down central instance windows will ride a bike drank alcohol a number of questions and what we did is have people with down syndrome record answers to those questions so not only were trying to squash some myths and stereotypes but seeing hearing the answer somebody someone down central also puts a human aspect to it and you know going back to what I said in all things will be okay C. N. that context you know it’s not a cold piece of paper or cold piece of text that you’re reading and trying to understand what causes supplied me seeing someone is giving you a hard fought sponsors makes a big difference and and how you’re getting that information so that that’s that’s another campaign you can check on well these campaigns you can find a lot the Canadian down syndrome society website C. D. S. S. dot CA I’ll look that up if I if I if I do have a problem getting it I’ll I’ll make sure I get the link from you because that’s that’s definitely something we love to promote Matt do you have and if you do then where there were other times Matt were you maybe when you were younger you saw that all I can do this very very good craft your public speaking with the tough thing I have done where I can’t go back there I didn’t know I’d rather speaking now look at me right now so thank god is speaking our work with our ring that back if I could take that baton that how I can speak clearly enough darkie people can you ever you were a little nervous when you first started public speaking yes I think everyone is that’s one of the scariest things you can do you know listed listed under like being a fighter pilot trying to land a plane on aircraft carriers that can be really nerve wracking yeah what helped you with your public speaking our technology to wipe your health care if my yeah speaking to the as yet going armed mumbling but try to figure out a good instance the grafting in advance rules coach thing that helped me to calm down and then %HESITATION I safe there and I think the more the more speaking engagements you have mapped the better you get at it so you know which rooms with your work with data and you know you’re often times even going back to singles consciousness you’re you’re up on the stage with a microphone or you’re you’re leading in a discussion with your peers so I thank you because you’ve had so many opportunities to speak you know you’re much better at it just like they don’t anyone else it’s all repetition Matt can I ask you you know Liam he’s cognitively there as far as speaking but his expressive language is comes in a little bit slower and we work on that and we assist him with speech as a parent talking Teo who eat you speak very eloquently and I love I love to listen to you talk %HESITATION can you tell me as far as advice something that helped you with speaking is there a an apple or is there a book or is there something that you use that that help you to develop your speech help me with this one all right really there are no you’re just go go it would take time but I believe that yeah we take great really if he what you’re hearing a product that you have a good day your goal in the future R. birthdate yeah great question talk to you was it frustrating for you as your speech was coming in yeah and what it what helped with the frustration just as as you know just as someone who’s I’m supporting my son to develop his speech what helped you with that frustration from drug all help me with my feet and co workers look at how we talk correct me knew what I’m talking about dot this may affect you I always say that they are the only good score for speaking can add those when you always tell me sometime tomorrow I thank that the amounts not afraid to speak his mind so we just have to give people like Matt the opportunity to speak and to be heard and to stop and listen and you know not cutting off for not trying to say what you think Matt wants to say not only once a little saying so incensed yes you can only say it again well we’re glad we’re able to bring you guys together and and have you guys talk to each other a little bit I know you guys don’t live next door to each other obviously there about an hour and a half hours away %HESITATION but you know what this project is a campaign I was very adamant you know we need to be a big part of this and I’m just very happy the way everything turned out and %HESITATION your journey with your daughter over the last six years is there anything that you’d you’d like to share or whether it be personal or just a you know very very very hopeful for the future like I’ve I’ve seen how my daughter thrives in school and in social settings and you know the thing that she does like you know I don’t see them on someone else’s right to see them as I’m on and you know I’m I’m not why you know there’s things that I still think about about the future I’m not not fearful I’m on and I think things are going now you know we’re in a time where the big big time in society and again it just goes back to you know just be on down syndrome where I think there’s gonna be some big changes and we’re just on the on the tipping point and and some very I was scared Meineke my guard down but I was scared yeah I don’t think that’s naive at all I I I know we’re with you ed and Matt it’s been a pleasure talking with you thank you for joining us on the podcast again thanks a lot for the opportunity to speak out level two beyond your backyard.

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