SPEAKER_01 0:05

Welcome to T21 Mom.

SPEAKER_02 0:09

Hi friends and welcome to the T21 Mom podcast. This is Mary, and I'm Mom to Ainsley, who is 10 years old, soon to be 11, and she has Down syndrome and also the dual diagnosis of autism. And this is episode 110. Now, regardless of how old your child is, do you think about or maybe even worry about the future for when they are out of school? Do you even know what's involved with the whole transition? Now, on today's episode, I talk with Patrick Cadigan and Megan Smallwood of the Post-Secondary Transition podcast. And their podcast is all about literally that, the post-secondary transition. And it is a bit of a longer episode today, but it is full of lots of great info. So you might want to grab a pen and let's go have a listen. Today on the TE211 podcast, I have two guests, Patrick Cadigan and Megan Smallwood, hosts of the post-secondary transition podcast. Welcome. Thank you for having us. Hello, hello. You're very welcome. I'm quite excited to chat with you both today about such an important topic for parents. But first, can you tell me a little bit about you and your backgrounds and what compelled you to start your podcast? Sure.

SPEAKER_01 1:40

Do you want me to go first, Patrick?

SPEAKER_00 1:41

Yep.

SPEAKER_01 1:42

Okay. Well, I am actually originally from New York, and I grew up with an older sister who has an intellectual disability. So, you know, the world of special ed was always around me, which, you know, second nature. So of course I went to college to become a special ed teacher. And I was a life skills teacher in our county for about 12 years, but I had gone back from my master's and took a course in transition, in all things transition. And I realized that was my true passion. And seeing what my sister went through, my mom went through, you know, as she was getting ready to exit back, you know, when she was 21, I realized how much I wanted to help families like that. So I jumped into the transition world in our county. And I've been there seven years now.

SPEAKER_03 2:26

Oh, wow.

SPEAKER_01 2:27

So yeah. And I love it. I love working with the families and the students and, you know, just being that shoulder for them to cry on when it gets tough and to depend on for the information. So yeah, it it's a great job, it's great job. Awesome. And what about you, Patrick?

SPEAKER_00 2:43

Yeah. So for me, I've bounced around quite a bit. I was actually an actor in the early 2000s in and around the Washington, D.C. area.

SPEAKER_01 2:51

And then I love your background story, Patrick. It's so interesting.

SPEAKER_00 2:56

Yeah, yeah, because I love talking about it. Um but uh but I but I did that. I so I I I focus primarily in theater. And then my best friend owns his own construction site safety firm. So one day he calls me up on the phone and he says, you know, I just lost somebody in my office. Can you come and you help me out? And I ended up staying there for doing that for like seven years and just kind of moved up in the company as I was going. But there was always that thing in the back of my head that was like, you know, I've always really enjoyed working with kids. And so a long conversation with my wife. If I was going to do that, then I needed a college degree. So I went and I did that. And so I got my undergrad from Towson University and then ended up going back a few years later for my master's. While I was there, I so majored in special education, but with a focus on autism studies. And and that actually was where Megan and I kind of hooked up because in my third year, we did a transition class with a gentleman, Doug Dehan, who now runs the Hussman Center for Autism at Towson University. Brilliant guy, really, really he's probably too brilliant. He's a little intimidating. But so for one of the the final project for that, he's you know, he was like, You guys get to choose what you're gonna do. So I asked if I could do an interview, and he agreed. And so I had remembered Megan, because Megan and I kind of sort of came from the same school. Like we were we were kind of transitioning, like I was going out and she was coming in.

SPEAKER_01 4:34

We had a couple years together, I think, there.

SPEAKER_00 4:37

Did I always I always get confused about that? But yeah, maybe we did. And but I rung her and I said, Can you do this interview with me? And she was like, sure. And by the time we were done, she mentions, you know, this is something that I've always thought about doing with my families because I I really would like them to be able to tell their stories. And I was like, Hey, that's a podcast. And I'm not gonna do that.

SPEAKER_02 5:05

And that's how that's how the podcast came to be.

SPEAKER_00 5:08

And that yeah, I think we did we did research, we did research for about a year. I'm the tech guy, so I like to do all that kind of nerdy stuff.

SPEAKER_01 5:17

Majorly, yes.

SPEAKER_00 5:19

But you know, like what research podcasting, research the topic, tried to find other sources, and to my astonishment, found that not that there was nothing, but there was very little, and what was there was usually what I would refer to as fits and starts, right? Like they they would have a couple of episodes, and it would just kind of drop off. And so I got really excited and I called Megan and I said, I think we can do this. And she was like, I agree.

SPEAKER_01 5:52

So meanwhile, in that year that he was researching, he was busy building our website as well. So that kept him busy on the other side.

SPEAKER_00 6:02

Oh, no, no, wait, let's be real, real clear about this. Megan, okay, so I will always throw out there that Megan is the brain trust of this partnership, right? Like one of the things that I've always found fascinating about Megan and her story is that transition is in her DNA, right? Because of the experiences that she had with her sister. I am very much interested in the tech side of things and taking a lot of information and trying to make it understandable to help people. Like that's where my passion comes in. So as far as the website is concerned, Megan had already done something and done it really well. And I just looked at it and was like, oh, I can make that, you know, a little flashier. But don't let her fool you. All of the information that's out there is hers. She's the one who did the PowerPoints, she was the one that did the information sheets like just this vast trove of information that she had built, collected, and and then was absolutely willing to share with anyone and everyone. And I just always thought that that was really cool. So it was a good it was a good connection.

SPEAKER_02 7:10

Fantastic. Now, your podcast is about the whole post-secondary transition for people with disabilities or special needs. Obviously, my podcast is about people with Down syndrome, but obviously it it applies because I think one of the scariest and unnerving times that us special needs parents go through is wondering what happens after high school ends. You know, I hear about this all the time. I'm Ainsley's only 10, so I I have a few years, but we got to get to high school first. That's that's it, what's on my mind. But, you know, I often hear parents liken it to essentially just jumping off a cliff, you know, with probably not a parachute. But, you know, so I think, I mean, you guys are the experts, but I think so many things need to be in place before you jump off that precipice, like first in the states, because I think it's quite different than in Canada. What age can kids go to school to?

SPEAKER_01 8:10

And it differs from state to state. Typically it's 21, but there are a few states, and I forget which one exactly. I want to say Minnesota, Montana, they can go to 26, because I know there's a running joke in a lot of our IEP meetings that we're just gonna pick up and move to the Midwest so we get a few extra years in. But it's it's yeah, it's typically 21.

SPEAKER_02 8:30

Okay. Cause yeah, in Canada, it's only 19. And wow, barely at that. I just discovered because I just did one with Dorothy about the transition of her daughter. And her daughter, her birthday, I think, is in January. So she can only she only gets that one extra year. But my daughter, Amesley, her birthday's in November. So she actually gets an additional extra year because she's in the latter half of the year, which I did not know about. So I thought, okay, we kind of get two extra years, whereas most if you're in the first half of the year, parents only get one extra year.

SPEAKER_01 9:06

So we've had situations like that where if it it depends on when the school year starts. So let's say last year I actually had a student whose birthday was on the first day of school. He turned 21, he got that full extra year to go. If his birthday had been the week before it started, he wouldn't have got it.

SPEAKER_02 9:24

So yeah, kind of sort of similar. And I know in the States, the school start times is all over the place for us. It's pretty much Labor Day after Labor Day. So so you know I've been listening to your podcast and I I think it's really informative, but there's just so much to know. I was just talking to Patrick before we started, but like where do parents start? Because it's kind of daunting.

SPEAKER_01 9:54

Yeah. And I think you brought up a good point. You're worried about high school right now for your your child. Like that's what we face a lot of, you know, when we try to get the conversation starting earlier than later. A lot of parents aren't necessarily ready for it. And I know Patrick feels this in the middle school. You know, they just they they don't really want to think about it yet. They've got plenty of time, but then before you know it, you know, it's it's almost 21. We've got to get moving. But you know, in Maryland, we're, you know, our transition begins, the conversation is supposed to begin around 14. And it's just, you know, a matter of starting the research process, you know, thinking about what would, and I'm gonna probably say this a lot tonight, you know, a meaningful day be for your child after they leave school. And it's so different for everybody. And I think, you know, I work with a lot of parents who are still accepting that it's going to be different. You know, it's not gonna be the cookie cutter, we're graduating, we're gonna go to college, we're gonna get a job, we're gonna live on our own. Like it's gonna be whatever works best for your child and your family, and just kind of learning what that's going to be.

SPEAKER_00 11:00

One thing though that I will throw out there that I do feel like that our specifically our county does fairly well is the reason what that it starts at age 14 is to spread out the expectation over that time frame. So as a middle school special educator, I am usually that person that starts that discussion. And so for us, it is having an interview with a student and talking with them about what their interests are with a full understanding and recognition that the likelihood that what like let's say if I sat down and talked with Ainsley, right, like what she would communicate to me is her interest at you know age 14 may not necessarily be the same interest that she has, you know, at 19 or 20 or 21, you know, somewhere down the line. But at the very least, it gets the conversation going.

SPEAKER_02 11:58

Yes, and because that's a long road, seven years essentially. But I think, you know, small steps, so it's not so overwhelming, you know, when your child is hitting, you know, getting close, like 19, 20. Because I have heard of stories where parents, I think it's in their final year and they haven't really thought beyond too much. I because it's it's scary, but then you're kind of left scrambling a little bit. And I'm and I always thought and when Ainsley was little, I go, all that has to have been in place like years prior, you know, what you know, I guess kind of what avenue. But like you said, Patrick, I don't think anyone knows at 14 really what they want to do once they're out of school, right? So especially, you know, maybe our kids, I think their interests are gonna vary just like any child.

SPEAKER_01 12:47

So that could be I like to tell kids that when we meet, like I don't expect you to tell me right now what you're gonna be when you grow up and stick to it, you know, it's gonna change, but it's kind of cool to go back by senior year, you know, to see what you said freshman year, sophomore year, like it just compare, see how you've grown.

SPEAKER_02 13:03

Oh yeah, 100%. Yeah. I I feel like it's probably never too late to start, but obviously I would think earlier is better, like you said, by age 14. So you kind of touched on it, Patrick and and Megan. Do you have to know or have an idea what path your child is going to take, such as getting a job, doing post-secondary education, going to a day program? I don't know if it's called this here, but I know in the US, or at least where you guys are, is that there's a certificate track and the diploma track. So do you kind of have to know by age 14 like what track you think your child's gonna go down?

SPEAKER_01 13:50

Not necessarily. And we just had this conversation on one of our past, you know, podcasts about having those tough conversations. And I think a lot of times, maybe in the back of their mind, parents know what ultimately might be the path, but they're still trying for a different path. But you're never tied to it, you know, at a certain age. You can always talk to the team, talk to your, you know, your child, your family, decide what works best. I think it's just an ever, ever changing thing. You know, you just it's gonna, it's gonna take time to perfect it and figure out what the best plan would be. But I think just, you know, having those conversations and including everyone that knows your child to kind of get that picture, you know, that well-rounded picture of what a meaningful life would be for them would help.

SPEAKER_00 14:41

And I do think it's also a a very important point to make the distinction that there are different paths for so when we place, when we talk about being certificate track, that means a student who is not planning on graduating with a high school diploma versus the diploma track in which they will. And those paths can then, you know, split and you know, the expectations then become differently. And kind of to Megan's point, that like in one of our most recent discussions, we had said that, you know, that's when you have to start having maybe some of those, you know, some of those much harder conversations because, you know, as parents, you know, we want the most and the best for our kids, but sometimes our kids had different ideas and and we have to listen to those voices.

SPEAKER_01 15:30

And I think one thing I've seen over the years is, you know, when a parent, you know, is still kind of tied to the idea of my child really could get this diploma. And, you know, they're pushing, they have high expectations, which is great, but then seeing the child in the school and they're not truly enjoying their experience because they're in these classes that are not a great fit and they have stressors on them because they're trying so hard to perform. It just, you know, those are the conversations I think when we meet with the parent and the team that it it is difficult to have, but like to let the parent know this is what we're seeing, and you know, there might be a better path for your child, you know, so just to consider all options.

SPEAKER_00 16:10

And and and again, kind of playing off of that, it it also makes it tough because one of the things when Megan and I first started out like doing this was we had that conversation of do we focus on non-diploma bound, do we focus on diploma-bound? Like how do we how do we do like how do we push that information out there? And we both, given our backgrounds, we both kind of agreed that primarily a lot of our discussions are for the non-diploma-bound students or for the students with the most significant needs, because that really is where our passions are. However, I have had and or and we I shouldn't say I we have had conversations with people who have brought up very, very good points about the the even if you're diploma-bound, these you know, these are kids with disabilities and they're struggling too, and they need resources as well. And so it it really has it's been a push and a pull.

SPEAKER_03 17:10

Yeah.

SPEAKER_02 17:12

I know it's or kind of what you were saying, Megan. Sometimes it's not always a good fit. Like I know here and elsewhere, I mean, a little off topic is the parents really push for inclusive education. And I'm all for inclusive education, but sometimes your child is not always gonna do the best in a gen ed classroom. And, you know, they might do better in a special ed classroom. I totally understand that. I never thought that when Ainsley was young, but as she gets older, I can see why it can be a real struggle. So I and I get it. Like some parents, they really hope that their child will get that diploma. But, you know, I think for a lot of us in in my community, that's probably not a genuine reality that they're going to get a high school diploma. They can get, I think here they call it a dogwood. I think it's called a dogwood diploma. It's I think is what it's called. But you know, and it's hard. It's hard on the parents' hearts, right? I totally get it what that's like. So where do parents start? I know, for example, here my friend Dorothy was talking about like get them, you know, ID at a certain age and get them their SIN number, which is equivalent to your social security card, I guess. Like, what are some of the things that parents need to do to get started on this road so that they have success at the end?

SPEAKER_01 18:37

I know for our state, and every state has one, but we have state funding, which you probably heard DDA, which is Developmental Disabilities Administration. That's like the long-term state funding after 21 that will, you know, provide the supports for any kind of meaningful day, whatever it is. That's one thing to put in place, you know, and pair and say, well, it's it's a waiting list. It says I don't get anything now. And we recognize that, but they need to know, you know, how many by the time your child is 21 that they're going to be funding for. So, you know, it's kind of like step one for us with transition at 14, like you complete that application, you know, check that off, and then let's just continue on with our researching. But similar to what you said, like I know around 18 is when we typically tell families, you know, start thinking about, you know, getting an ID, a state ID, so that they have that to carry with them. And then they have they're eligible for supplemental security income or SSI, like a monthly amount. You know, so there's other things that get put in place, you know, and I think I usually tell parents between 14 and 17, you kind of, you know, it's kind of laying low, you're just gathering the information. And then as soon as 18 hits, we're like, you know, speeding off towards 21. And that's when a lot of things start, you know, flying by. So it's it it's good to take your time, like Patrick said, you know, it's it's chip away to little by little and gather that information.

SPEAKER_00 20:03

There uh one thing that I could throw out there on our so website plug www.postsecondarytransition.com. When you hit that website up in so it's like a like a tabbed experience. So if you go to the first tab and click on start here, so it'll take you to a page that will say, like, if you are a certificate track freshman, these are the things that you know you might want to have, kind of like where Megan was throwing it out there, like applying for the state ID, applying for Doors DDA, creating an at-home file. But the point is, is that that was something that came up, that was again one of those resources that Megan had put together. And actually, now that I think about it, it was also another transition coordinator that we had worked with. Her name's Erin. She, it was part of her, if I remember correctly, it was part of her master's program, final project. And she kind of pulled all of this stuff and and it was like, hey, this is a really good idea. And so, like, it kind of tracks like if you're a freshman, this is what you can start to do. And then if you're a sophomore, this is what you can do, and then if you're a junior in a seed, so it kind of it's kind of like walking you through the process. There's lots and lots of stuff in between, like Megan was saying, there's gonna be some downtime and stuff. But it if if you are completely without resources or like just blank on where just where to start, that might be a good place to look.

SPEAKER_03 21:34

Okay.

SPEAKER_01 21:35

Yeah, and I think the thing that I hated was hearing parents approach 21 from my school, from anywhere in the county, and say, Well, I I've never gotten this information. I had no idea. You know, I was just I just want to make sure everyone's as informed as possible. And, you know, I know parents that'll call me and say, Okay, what should I be doing now? What should I be doing now? Like, you know, checking in like they've missed something. And you know, I just wanted to make sure that they had a place to go to take their time up and they. were ready to get the information they needed. And so is the DDA, is that a federal program? It's a state program, but every state has their version of DDA.

SPEAKER_03 22:11

Okay.

SPEAKER_01 22:12

And that's a question, you know, as a meet with families that they'll say, oh, well, when we move, when we retire, we'll just go to California and get DDA, right? And I'm like, no, no. It's kind of like starting over. Unfortunately, you're going to have to do the whole application process there, get on a waiting list. Most of them have waiting lists. I Googled it once just out of curiosity. And there's in our state transitioning youth at 21, they get first priority for funding. So they're kind of guaranteed the money. After that, let's say, for example, my sister, she's in New York. If I wanted her to move to Maryland and she's 43 right now, she'd be put on a waiting list. Right.

SPEAKER_00 22:50

And there's no guarantee for money, you know, for a few years if that and playing off of that, some of the parent interviews that we've done, I remember in one of our episodes, one of our earliest episodes, we had talked with a family they started out in California and then they came out to Maryland. And again, just a very, very different experience, very different set of expectations. And it took a while to adjust.

SPEAKER_01 23:14

And that goes for families in the military too. We've had a couple families who, you know, they have to move around. Yeah. So they were trying to predict where they might be when their daughter's 21. So it's it's not an easy process. And it it's frustrating, you know, when you're trying to plan for the future and you're kind of, I know families have said, I feel like I'm stuck here.

SPEAKER_02 23:33

But never thought about that for the military families. Yeah, that's yeah, that's kind of like that would be really challenging. Oh gosh. And I know you've talked about like like you're a transition coordinator. I don't even know if we have that here, which I it sounds fantastic. I know we have transition fairs. I actually just learned about that. So I I want to start going to them because you know just to sort of see what's out there and kind of what you know is coming down the road. You know so are you like kind of like assigned to somebody like how do they get you? Like how do they get a transition coordinator? Does it happen automatically? Do they have to call up or is it similar to a social worker? I'm not really sure.

SPEAKER_01 24:22

So it's handled differently in in every county in our state. For our county every high school is assigned a transition coordinator. And then every student with an IEP in the school I work with and you know to update like their pages on the IEP, but I'm also available as a resource for them and the families. And for those like we talked about going on the diploma track, it's not as intensive because they have the support of their case manager, their special educators, you know, it might just be a few meetings here and there. But for those families that are on the certificate track, I definitely work more closely and directly with them, you know, over those seven years they're in high school and preparing for exit. So I know yeah like for our county it's one per school but I know other counties in our state there might be like a couple coordinators for the whole county. And so you're not working as directly a lot of it falls more on the case manager or the special educator in the school and they're just more of an indirect resource. So it's it definitely is handled differently.

SPEAKER_00 25:22

I recently over the summer we had uh taken my wife my family and I we had taken a trip down to Florida and while I was there I just was curious and I started to do my own research about transition and what it looked like there. Now granted I only was doing it for like a couple of hours but it seemed to me that the way that they handled transition there was through a lot of informational resource pages like you know so essentially websites. And I never did I I I don't get the impression that they supported the idea of like a transition coordinator. I could be wrong but but yeah to Megan's point I mean wow it's it's very it can be very different depending on where you are no parent wants to be told to go check out a website exactly for such a major milestone.

SPEAKER_02 26:10

Right.

SPEAKER_00 26:11

You know and and that was that really was the kind of the the jumping off point when Megan said you know this is why I want to do this. And that was the first thing that she brought up was she's like I want families to have something you know something to listen to something to hear you know and to let them know that they're not they're not alone.

SPEAKER_01 26:32

And I think the other thing is even though in our county every high school has a transition coordinator there are inconsistencies amongst the coordinators.

SPEAKER_02 26:40

You know not everyone is going out and doing as much as you know I'm doing or another one's doing you know it so I just want to make sure the information was there for all of course you know and and that's kind of one of the reasons why I started my podcast is so that people could have a place you know to find information and you know to bring experts on like yourselves you know to talk about different things that you know our child needs. Because like telling to them to go to a website is is not good. I remember when Ainsley got her autism diagnosis, the whole experience was horrible how it was delivered and they handed me a book and told me I think look at that tab and call that number that's what I was told. I don't remember really anything that they told me after they said oh yes she has autism nobody remembers anything. So you know I think it's fantastic that you know schools have a transition coordinator like yourself because you're the expert. I am always like I remember when Ainsley was in early intervention we had a fabulous support person and I went to her for everything because she knew everybody she knew exactly what to do she got us into daycare etc you know so I think everyone needs like those key people to direct them.

SPEAKER_01 28:02

That's why I like my role because you build that like relationship and that level of trust with the families and so I will get questions about things that may not be transition related but they feel comfortable enough to come to me. They know I'm a support person and I'm helpful you know able to direct them to where they might need to go. So I just love being able to to build that bond with people.

SPEAKER_00 28:26

And then Mary if I could segue into something because I I want something that you said sparked a memory in me you using using the word book I one of my absolute favorite episodes of yours was when you brought on and the name is totally escaping me right now but she was the author she was looking for books that represented her or her son. Oh Mika Caldwell yeah her yes she does the she has a little series My son and I and yeah and I just so again representation and I just I I I flipped out when I heard that and I ended up calling up well one of the moms of a student that I used to work with because that was something that she advocated for her son. His name is Lucas he was one of my students for about three years and I was just so excited to share that with her and and she really appreciated it I just I just thought it was cool. So I just wanted to throw that out there that that that episode moved molecules for me.

SPEAKER_02 29:26

Oh that's wonderful I'll I'll be sure to let her know that that's awesome. Wow so Patrick I know you mentioned you can go to your website and certainly we'll put links in the show notes but is there kind of like I think the whole transition process can be complex. It's kind of like seven years for you guys. But is there is this where they need to people need to parents need to go go to your website and where it says start here like does that is that going to tell parents what they need to do and kind of when I'm gonna I'm gonna defer this one to Megan but I kind of know what she's gonna say.

SPEAKER_00 30:04

Go to find people around you go to Facebook find Facebook groups. We belong to several Facebook groups they're amazing because they are parents helping other parents they're throwing stuff out there. Megan what are you thinking?

SPEAKER_01 30:17

Yeah I was gonna say they there's such a big support and I know there's been some great collaborations that have come out of these social networkings from the parents including agencies, adult agencies in our area that formed over COVID because the parents got together and said this is not what we want. We want something different and now we have these great programs. So yeah other parents are just such a huge resource I think our website's a great starting point though I think it gives a very good overview of you know all things transition and really gets you thinking about okay well this this might be coming down the road soon for me. Maybe I need to consider this or what would this mean for my child.

SPEAKER_02 30:56

So I think it's a good way to start the process of you know what's to come okay that's great because I think you know yes parents are told to go to a website but if you're told like you can start here I think for a lot of parents because they kind of need some guidance I think often just where they need to start and then like you said connect with other parents and yeah I hadn't even thought about that like just through social media trying to find other groups. Like I mean I have all my personal Down syndrome groups but yeah and we have a wonderful resource here called the Down Syndrome Resource Foundation. They're fantastic so I would certainly use them but lots of people don't have that you know they you know thank goodness for social media these days because you could be anywhere and you can access this information. You don't have to be in one location so which is fantastic.

SPEAKER_00 31:51

Now sorry go ahead Beth well no I was just gonna say that and that was a part of the conversation that Megan and I had recently because uh there in one of our conversations that we had posted up I came out like I have a love-hate relationship with social media but one of the reasons that I'm still around is because of those parent groups and because you can watch in real time people supporting each other and I think that that's the ideal and so you know I don't I don't post a whole lot on Facebook but I do I am constantly going to those those groups and we in fact just recently we had a conversation one of the reasons that we had the conversation that we did was because there was a lot of discussion in one of the groups that we belonged to there was a lot of frustration around a payee system that had seen some sweeping changes and so there was a lot of frustration around that. So Megan and I reached out to somebody that we knew that knew a little bit about it and she came on and she talked with us. So yeah.

SPEAKER_02 32:55

Oh that's fantastic. Yeah because I do feel like parents are often the best sources of information and and guidance because you know I'm always looking at the parents who are ahead of me because they've they've they've gone down the road before me and I always look for them for for guidance and and I want to be that for the parents who are behind me because it it it can be really hard. I mean just being in school is hard for a lot of our kids and the families and you know just the amount of advocacy that you have to do. And you know and for some parents you know they're just trying to survive getting through high school and then they got this whole other process that they got to deal with and you know and parents you know at that point like as Dorothy had mentioned when she came on and we were talking about transition is that a lot of parents just are so exhausted at that point that they just don't have it in them to be advocating it as much anymore or at all. And also they're that many years older than they were when they first entered the school system. And you know so what do you suggest for parents I guess kind of when they're kind of going down that road you know they it it is exhausting. This is like a lifetime journey with our kids and you know it that can be really daunting when you're thinking about that. I mean I you know I think for a lot of us it's just trying to get to the next milestone not thinking necessarily 20 years down the road but you know I don't know is there words of wisdom yeah I think you're you you hit the nail on the head.

SPEAKER_01 34:43

It is an exhausting process and I think part of the reason why I like want to do so much is because I want to take that burden off of parents while I can because I know at 21 they're gonna leave us and it's going to be them. So it's a fine line because it's like you want to help them as much as you can but you also want them to understand all the information because as one of another another parent that I used to work with had said at one of our parent panels and it stuck with me forever. You as a parent are the constant for your child. You know all these people come in to help but they're gonna go away and you're gonna be the remaining person. So you need to continue to be that advocate you need to know who's responsible for what and how all the pieces fall together and just remember like you you were the the holder of all the information and well that's a big task to to have like it it's just it's something that you have to accept. But at the same time while you have all those resources use them. Ask the questions don't be afraid to ask them a million times over and over you know until you fully understand it. Because I always forget you know I'll I'll mention DDA and CFC and all these acronyms because I live it day in and day out. Yeah and I'll have a parent looking at me and I'm like I need to slow down don't I like I need to explain what that is because it's it's a lot. So until you know and I have a parent who English is their second language and she's requested that we meet you know monthly and she'll come with her book and and she's taken upon herself she's Burmese the Burmese community that also has you know other children with disabilities she wants to understand all this so she can be the advocate to help them understand it. So you know it's multiple layers but she's coming in with her book and writing it down and we go over it and she asks questions. So I love that and I'm willing to sit there and go over it over and over for her because I want her to feel confident when she leaves. So that's what I think it's just it's exhausting but it's it's just something that you know you just keep on trucking just like you do with everything else.

SPEAKER_02 36:56

And how does work in the US like here technically you become an adult at 19 I I think in the states it might be considered 21.

SPEAKER_00 37:05

19 oh 18 oh interesting okay because 19 is sort of the golden year here like is when you can drink legally interesting yeah that's 18 for us oh no sorry drinking is 21 18 is adult for us oh interesting the golden opportunity I guess is voting so eighteen voting but then yeah you can't drink until you're 21.

SPEAKER_01 37:28

So right but I think the the scariest thing for parents is the healthcare aspect because at 18 doctors are telling them they're technically an adult that you don't have any rights anymore. And that makes a lot of parents nervous and what do you mean I'm that's my child like how can they be 17 today and 18 tomorrow and suddenly I have no rights. And that's when the conversation about like guardianship comes up with a lot of parents but you know again I tell parents just you know let's go through the information together. You know, they can't tell you not to go in with them. There's a simple HIPAA form you can sign. Anyone can go in if they want you there. You know it just it just becomes very real because suddenly they're an adult.

SPEAKER_02 38:09

Yeah. And I think here it's a representation agreement that you need to have signed on the 19th birthday so that you could, you know, still make those medical choices for your child if you know if you feel that they're not able to make those choices. So okay yeah.

SPEAKER_00 38:29

And the and one other thing though and playing off it because of course you know we're talking about how you know other parents are obviously a fantastic resource. I will say though that there are times when because you know one parent's experience could be wildly different than another one. And so I mean again one of the things that we always kind of go back to is is that it it is truly going to be an individualized experience. And so you might have a really good experience with you know situation A and then have a really bad experience with situation B and then another parent will come along and it'll be the exact opposite.

SPEAKER_01 39:09

So it's just yeah that's what I always tell parents to talk to other parents but also take what they say with the grain of salt and make your own decision. And I know a lot of times I have families that come in that are very overwhelmed because they hear 21 like you said it's falling off a cliff. It's just you know horrible compared to what it was and they have all these stories of you know things that have happened and I'm like okay let's take a step back. We're gonna we're just gonna focus on your child you're right it's it it it can be a daunting daunting thing.

SPEAKER_02 39:44

Yes and Patrick you sort of touched on it about like and Megan about guardianship. So I mean healthcare is very different in the US than it is here in Canada. I mean we have universal healthcare but what happens when your child turns 18 like here I think Ainsley could still be on my benefits. I'm pretty sure that is the case but what happens when they are 18 or 21 in the in the US for their healthcare?

SPEAKER_01 40:19

They can still be on the medical benefits of their parent but we have medical assistance or Medicaid and in order to access the DDA funding in Maryland they have to be found eligible for medical assistance because DDA is a Medicaid waiver. So even though they are eligible they don't have to use it it can be a secondary insurance. So they can still remain on their parents okay but they have to be they have to have it and they can be found eligible after finding being found eligible for SSI.

SPEAKER_00 40:51

Okay. So it's like a chain of events at 18 all right Megan I'm gonna give you a hard time acronym vomit for it's SSI.

SPEAKER_01 41:01

Supplemental security income SSI which I think you had said was similar to the PDW PWD people person with a disability yeah yeah which is what we have here when they're 19.

SPEAKER_02 41:15

So it's yes like a government income I guess for lack of a better word.

SPEAKER_01 41:20

Same ours is SSI supplemental security income and this year it went up to $914 a month for an individual.

SPEAKER_02 41:29

Oh yeah not I can't recall I but I think it's a little bit more here but you know it's increased every year for us which is is nice. But oh that's good but it's yeah and they can also but they can they they can still earn money but up to a certain point can they not?

SPEAKER_01 41:49

Correct yes they can still work and we actually have benefits counselors available that can you know work with a family or an individual to make it you know happen so that their SSI is not impacted by how much they're making um but there are still certain stipulations like for example if you're receiving SSI you cannot an individual cannot have more than $2,000 in an account with their name on it. So then there's you know special needs trusts and something called an able account which a lot of states have. So all the information that we start researching early on.

SPEAKER_02 42:24

Yeah so I know there's it sounds so complicated. So I I know right I but I think if you start early you know just one step at a time that it's not so overwhelming for parents because it's just it's scary for everyone and then you know and then when you hit 21 like it that's a whole new that's a whole other ball game once that's all once you've transitioned. You know and I I'm really hoping we have transition coordinators here. I don't know but I'm gonna be finding out if not start advocating 100% because I think we all need that because if you're not living in this world you have no idea what parents have to go through the amount of paperwork we have to fill out the amount of forms you know things we have to sign whatever I mean I'm always forgetting something because I go there's just so many things to keep on top of that something's gonna fall through the cracks. So you know we definitely need people like you bow to help guide us because it's it's just such a a crazy time.

SPEAKER_01 43:38

Yeah absolutely and that's why you know we're a huge resource you know and I love when parents come looking for help because that's I'm like I'm here that's what I'm here to do.

SPEAKER_00 43:46

I'm here to help one thing that I will throw out there and we had had a conversation about this not recently but we did we did a discussion around guardianship. Guardianship is a tricky subject to talk about But one of the things that Megan was always quick to throw out there is that there are also alternatives. And there are alternatives that are very supportive. So don't like don't not think about those. Like do really strongly consider those alternatives. And I mean if guardianship is ultimately what you decide on, then of course that's your choice and you know you're gonna do what you need to do. But there are alternatives, and so just consider those as well.

SPEAKER_01 44:25

Yeah, I'm glad you said that because you know guardianship is just one of the tools in the toolbox, and you know, it's also the most restrictive tool. So I think a lot of parents hear from other parents, you know, you need to get guardianship now. And they're like, oh my God, okay, let me go get an attorney. But it's true, you know, you need to to do all the research and see what other alternatives there are. There might be something as simple as signing a piece of paper and having it notarized that that's all you really need. I know a lot of families, the the two main items are the medical piece and the financial piece. Yes. And that's really what it comes down to. And I know in our state, you know, there are alternatives that will take care of that without jumping to guardianship.

SPEAKER_02 45:06

So oh, that's fantastic. I mean, I know we've talked, like kind of touched on a lot of different things, and obviously people can go to your podcasts and get more in-depth information, you know, about, for example, guardianship and probably about able accounts and and so forth. And just I know, and Patrick, you sort of touched on it, I think it was you, Patrick. Like there's just so many steps to take to make this whole transition beyond high school, but how do we involve our kids in helping to make these decisions? Because I think it's their lives and they should have a say. But sometimes that can be really challenging.

SPEAKER_00 45:50

One of the things that I'm gonna throw out there, uh this is something that I have thought a lot about this year. One of the first things on the on the list that Megan had created was having your child participate in their individualized education program process, like going to IEP meetings, starting to listen and understand, you know, like what that is and what it represents and how it works. And I mean, again, there there are varying levels of that, but understanding like person like uh what I should talk about, what I'm thinking about, and Megan, you can jump in and save me when I'm drowning, but person-centered planning, thinking, you know, thinking about what they need, but then but in order to be able to do that, they need to understand who they are. And we need to kind of give them the room to have that opportunity.

SPEAKER_01 46:48

And I think that goes for both sides. Like you thinking of the the the students who are receiving a diploma, you know, so many times I see them not even attending the meeting that's about them. And, you know, when I meet with students, I will flat out ask them, do you know what your accommodations are? What are you receiving in class to help you? And a lot of them don't know. They just think, you know, oh, I just get extra time just because, or everyone gets copies of notes, you know. So focusing on what knowing their IEP is just so important. And then, you know, on the other side, students who may not be as able to participate in a meeting. We've had students come and prior to the meeting create like a little slide of pictures of them working or, you know, a couple sentences of things that they wanted to tell everyone at the meeting so that they had a part about them. Um and I love fan I've had parents who, you know, made it a point to make sure their child was there and brought the child's picture and put the picture on the table, even if the child had to leave, so that we remembered this is what we are here for. This is the conversation, you know. So when people start fickering or and disagreeing, this is why we're here for her or him. So I think that, yeah, Patrick's right. That's a huge piece of it. But I think also, like I had mentioned before, just considering what's meaningful to them. You know, it might not be the same, you know, meaningful day to me or you, but what is meaningful to them? And that could be something like shredding all day. I have a student who absolutely loves to shred. That was meaningful to him. So finding a job where he could do that and he participated in his community by helping them, you know, that was that was what he wanted and needed. Allowing the student to make choices, you know, it's something as simple as, what do you want to eat for breakfast? You know, which shirt do you want to to pick today? Like just empowering them that they have a say. So it's totally possible, even if they're not the most verbal or, you know, cognitively aware, it's just uh any way that they can have a say in their own life.

SPEAKER_02 48:53

100%, yes, where they have a say in their own life. Right. Because I think sometimes as parents, we just feel like we just speak for our child because we know them. But and and I know I'm guilty of that 100%. I'm sure all parents are to some degree. And, you know, and as and my daughter is somewhat verbal, not hugely, but she can certainly make her knees, wants, and needs known. But you know, but like you said, trying to find those things that are meaningful to them. And when he's talked about the student who liked to shred, I just the other day someone posted about their child. I can't remember how old they were, younger. That's what she does all day is shred paper. And you know, she has Down syndrome and autism, I think is what it was. So it's obviously a sensory thing. But you know, that could be something that she could do when she's older. I never even thought of that, but you know, that's why we need people like you to help us, you know, find that path and to help guide us.

SPEAKER_01 49:57

So And that's one of the things when parents are are exiting and they we have uh two different paths that they can pick. You know, it's a traditional path like a day program, but there's another path in our our state where they can kind of individualize the the plan for their child. It's called self-direction. And a lot of times families might make their own micro business for the individual based off of what their interest was. I had another student who loved scanning pictures, so they they made their his own business cards and he went around and you know, passed it out to the community and he would scan old pictures for people. Fantastic. And it was a productive business, and he had a lot of customers, and he was doing something that he loved at his pace and in his schedule. So it's, you know, I love brainstorming with parents of how to make it work, and it's just so exciting. And then the child, the young adult is motivated because it's what they want to do.

SPEAKER_00 50:51

A lot of times they're really some of those best conversations are the ones like out-of-the-box thinking. Megan and I had a conversation with parents, Kurt and Selena. And I I Mary, I will tell you being in a room with Megan and Selena is exhausting because they just start coming up with ideas. And again, that out-of-the-box thinking. And well, I remember this student did this, and oh, well, maybe it could go here and do this and do that, and then, you know, and then they they talk to pay with these ideas, they go to the parents and they say, Hey, what did you think about this? And oh, you know, blah, blah, blah. Yeah, there's a lot to it.

SPEAKER_01 51:31

Oh, I just add one more. I had a student, a nonverbal student, and the mom was just like, she knew she was gonna do that, like self-direction, because he, you know, with medical reasons, he couldn't get up early. He wanted a day that was just, you know, around his schedule. But she's like, I just don't know what to do with him. This this student loved pushing a grocery cart. We actually got a grocery cart on the side of the road and had it in the building. And that's how he he ran his errands around the building. He would push the grocery cart. So I said, You need to go approach the local grocery stores, the the ones that he frequents, they know who he is, and ask him if he can just return the grocery cards for them. And she did. And that's one of the things that he does during his week. He'll go with one of his assistants and he brings the grocery cards back. And it's the simplest little basically the simplest thing to us, but it's so fulfilling for him and he's productive and he loves it, and it's just helping out a local business. So yeah.

SPEAKER_02 52:27

Yeah, that's fantastic. Yes, it is just thinking outside the box because you know, sometimes I know myself I get a little tunnel vision sometimes, and you just need someone else to say, hey, but she's great at this, or she seems to really be involved in this, and I think that's awesome. You know, I think this whole transition, it's can be really scary for parents, but it's nice to know that you know, there's people like you both out there, and that you know, so if people have questions, where can they find you? Patrick.

SPEAKER_00 53:04

Oh no, no, no. This is you. This is you.

SPEAKER_01 53:07

I know you love talking about it though. Our website, you can find us at www.postsecondary transition.com. Okay. Our contact information is there as well. We always love hearing from people. Any ideas for future podcasts? If you'd like to chat with us, any questions, we're always happy to talk.

SPEAKER_00 53:27

Well, I will throw out there that there is a link because our podcast, we actually have a second website for the podcast itself. Okay. And that one is p2ransition.com. Okay. And so, yeah, that is it. That's where you can go and you can listen to all the conversations that we've had. We've actually built up quite a nice little library. We're moving into our second year now. And Megan had said recently she when she went to the site and she looked, she's like, wow, you know, we really talked about a lot of stuff.

SPEAKER_01 53:58

We talked to a lot of people, didn't we?

SPEAKER_00 54:00

We did. We had some nice and and we've got more to come. That's what I'm looking forward to. Yeah, is we have more to come.

SPEAKER_02 54:07

Well, that's fantastic. You know, I think for a lot of parents, that can alleviate a lot of the the stress and the anxiety, you know, of what's coming is they can find you. And we'll certainly put links to both of your website and the podcast website on in our show notes. But I just want to thank you both so much for coming on. And, you know, if listeners need something a little bit more in depth, because I think we could sort of, I mean, I think we could talk for a few more hours, to be honest, about this whole transition process because it's it's so involved. But you know, to go and check out your website. It it does look fantastic. You did a great job, Patrick. He did, you know, and also check out their podcast because there's lots of great info on there. If you need to know about something specific, I'm sure you can find it there, or just contact you guys and maybe you can do an episode on it.

SPEAKER_00 55:03

Well, thank you for having us.

SPEAKER_02 55:04

Yes, thank you very much. You're very welcome, and I hope that we can chat again soon.

SPEAKER_01 55:09

Yeah, definitely.

SPEAKER_02 55:12

I know that was a lot of info to take in and a lot to really think about and maybe even wrap your head around. But here are some of my highlights, and I'll keep it brief because I already know it's a bit of a longer episode. But one of the first things is, you know, that we as parents, you know, we need to really try to find acceptance that it's going to be different. And, you know, there might be some challenges along the way, but it, you know, this is our kids' journey, and it's okay that it's that it's going to be different. And number two, and I hadn't really thought about this, but as Patrick said, join groups, lots of different Facebook groups, you know, find your people, you know, other parents, you know, are such great resources. They may not have a child with Down syndrome, but they may have a lot of that experience that you might need in this whole transition, or maybe they're from your area, because things are going to be different depending on where you live. And also number three is, and a lot of today's episode pertains mostly to those in the states, but I think regardless of where you live, you know, you can adapt a lot of the information that was in today's episode. But that, you know, that Patrick and Megan talked about that there are alternatives to guardianship. You know, I didn't realize this and I hadn't really thought about it, that guardianship is actually the most restrictive for our kids. So, you know, if you think there might be opportunity to do something different than guardianship, then, you know, think about that and and look into that. You know, number four, especially in the in the United States, the two main areas of concern for families is medical or health care and off and obviously the financial piece. That's a a really big thing that we need to plan for. As I remember when Ainsley was a baby, a woman told me, you need to plan for her whole life. And I hadn't really thought of it at that time, you know, not just for while I'm here, but for Ainsley's entire life. So that is something really important to also think about. And number five, and I have heard this before, but if you're able, you know, if you think your child would understand or benefit from it, uh, bring your child to their IEP. You know, our kids, they deserve to have a say and should have a say in their lives. And, you know, it's their life to live. So they should have a say on what that's going to look like. You know, person-centered uh planning. What is meaningful to your child? You know, it may not be what we want, but what's meaningful for them? And I know Megan and Patrick talked about lots of different uh scenarios that they had that with other kids where they were able to find things that were meaningful for them to do. And you know, are you going to number six do like a day program or self-direction? You know, think outside the box. And I think as parents, you know, sometimes that can be really challenging, it can be hard, you know, because it's it's different. But I think for the benefit of our kids, it's really beneficial to try to do that is to think outside the box. What what are what do our kids like to do? What brings them joy? What is meaningful to them? So find Patrick and Megan. You can find them on their website at postsecondaretransition.com. Or if you want to go and look at all their podcast episodes, they have their own podcast website at P2, the number two transition.com. Lots of great info there, you know. And also if you're curious about something or you have questions, please contact them. I'm sure they'd be more than happy to help guide you regardless of where you live. So thanks for listening to the T21 Mom podcast. And like I say every episode, I would really love to hear from you. I would love to know how you like the episodes, if there's anything you would love to hear, you know, drop me a line. Let me know. You can find me at t21mom.com and you can leave me a little message there. Or if you're so inclined, you can even leave me a voicemail. So keep on loving on your Rocky Kiddos, and I'll see you next time.