Patrick Cadigan: 0:00

The post secondary transition process is a significant milestone in the lives of students with disabilities. It's a crucial phase for families that involve asking hard questions, research, planning, all of that is going to help to address the specific needs and challenges associated with the young adult and their specific disability. In our discussions, we aim to provide you with an understanding of this transition, offer insights into the various aspects of preparation support resources that are available to you to ensure your child's successful journey into adulthood, equipping them with the skills and knowledge they need to achieve their goals and aspirations. So welcome. This is the Post-Secondary Transition podcast, we try to cover the ins and outs. And just about everything in between the transition process for families of students with disabilities. I am one of the hosts. My name is Patrick Cadigan. And in this process, I do have a co host, and who would that be?

Meghan Smallwood: 0:59

My name is Meghan Smallwood, and I'm a public school transition coordinator. And today, we are here to have a conversation with a wonderful parent who just went through the transition process. And I know her story, and she shared her story with my team not too long ago. And I'm very grateful that she's here to share with us and her name is Jane Plapinger. They're so welcome, Jane.

Jane Plapinger: 1:19

Thank you. It's great to be here.

Meghan Smallwood: 1:21

So I guess the best way is just to start off to share a little bit about you and your son, do you mind telling us about him?

Jane Plapinger: 1:29

Sure. David, my son is on the autism spectrum. He is very social. He's usually in a very happy mood, and brings smiles to the faces of people who he interacts with. He enjoys listening to music, participating in structured activities with peers, visiting with and having phone and video Can I ask what age was that, then? calls with family members, and going to Ocean City and writing on our outboard motor boat. He also has really enjoyed work based experiences that he had both in school and during school in the community. So he went to a public school and our community until he was in towards the end of seventh grade. And due to behavioral challenges, and lack of engagement in his learning. He went from our home school into a non public. And then sadly, after two years, he kind of behaved his way out of our home, we had a lot of behavioral challenges and home cease to be a safe place. And he went into a nonpublic residential school in the state. Just shy of his 17th birthday.

Patrick Cadigan: 3:08

And then Jane, if you don't mind, what, when you talk about behavioral challenges, what behavioral challenges were you experiencing?

Jane Plapinger: 3:16

His, he had two behavioral triggers. We went through a behavioral treatment program at Kennedy Krieger to analyze his behavior and identify his triggers. The behaviors included verbal and physical aggression. At school, he had behaviors, but they were manageable. And high school, the non public's had really deep behavioral supports that that helped him. His triggers at home were my attention. He wanted my attention and could not tolerate not having my attention. He couldn't tolerate two minutes of not having my attention. So, so life became really challenging. Because you have to do things like make dinner and answer the phone and all kinds of things for you. And then also losing desired object like, tablet, tablet. Look like a lot kids, tablet time is over. So yeah, it wasn't safe for us anymore at home.

Meghan Smallwood: 4:34

I know that has to be a hard decision to make. And I know I've I've worked with a lot of families who struggle with it. But I think you brought up a good point home wasn't safe anymore. And that's really crucial for not just you know, your son but the rest of the family.

Jane Plapinger: 4:51

Yeah, it was. It was heartbreaking. To take him out of his home. We took our son and an orphanage when he was a child, so it was very hard to take them at the home. However, the good news is that the school he went to the residential school was a wonderful, wonderful place for him. And it gave him the environment he needed, it gave him the attention he needed. And we put our family back together. After that, and had four and a half years of weekly visits that were wonderful, and his behavior, he just really turned the corner with his behavior.

Patrick Cadigan: 5:36

As someone who has not met your son, but has also worked with students with autism, you mentioned that your son is verbal, when you say verbal, how verbal is he? Conversational verbal, like, what does that what does that look like?

Jane Plapinger: 5:51

He has a lot of words, he doesn't have a whole lot of conversation. So he could tell you what he wants for dinner he could, and he will talk in a sentence more on a concrete level. But it's hard for him to formulate new sentences mean that he does a fair amount of repetition and scripting, like a lot of individuals with autism. So when he's upset, he tended to use his body and not his words. Now he'll say, Okay, I'll say I'm feeling agitated. And I'll say, what do you need to do? And he'll say, "use my words, take three deep breaths, like Henry taught me." You know, as these strategies that, that he's learned. So his communication is kind of in somewhere in the middle there. He's very verbal, and is limited in what he can communicate.

Meghan Smallwood: 6:55

So then it sounds like the quality of time together after that transition to residential was much better for everybody.

Jane Plapinger: 7:02

It's been wonderful. I mean, literally, our family came back together after several years of living on the defense, and just living in this hyper vigilant situation, due to the fact that his triggers were impossible to avoid.

Meghan Smallwood: 7:21

So then, I know from experience with you that that was a big piece when you were preparing for transition the residential piece. So I guess what age did you really start thinking about that post secondary transition for him, then?

Jane Plapinger: 7:39

Well, I started worrying about it years ago.

Meghan Smallwood: 7:44

That's a good way to put it, when did you start worrying?

Jane Plapinger: 7:48

Really, as soon as he went into residential, because that that is such a huge component, the residential piece, it's just it's a it's a it's a separate track. But I only started to think about it concretely, in terms of educating myself and about the transition process and preparing myself and researching agencies, about two years before he would was going to transition.

Patrick Cadigan: 8:22

And when you say that you were researching, how did you go about your research? Did you use the internet? Did you talk to friends, like how did you do it?

Jane Plapinger: 8:30

I went to transition fairs, actually, I started going to transition fairs when he was like 14. And I needed to hear a lot of those presentations over and over again. One suggestion I have for parents is to start early, because it's not just, "Is this a good program or place or agency for my child?" There's all those other pieces, like the SSI and the ID and the estate planning. And if your child needs guardianship, and there are, there's just a million pieces to it. And I had to hear those pieces a few times to understand it. And that that is separate from all the work of transitioning from school to adult services.

Meghan Smallwood: 9:19

Yeah, so those transition fairs are definitely important. I know that you you came on a lot of tours, too. And were there any other parents that you were able to connect with whether it was at his school or through social media?

Jane Plapinger: 9:33

Yeah, so transition fairs was just one thing I did. Another thing I did before I even started connecting with other parents, although I did do that was I went through the training or training that Parents Place with Maryland provides that's funded by the Maryland State Department of Education. It's called Guiding the Journey. And that really helped me it was a four session Saturday program. And that had me develop a vision statement for David. And it also familiar familiarized me with the Charting the Life Course planning framework. And Charting the Life Course, has these different it's an approach to Person centered planning that has these different worksheets, and we had homework and had to fill out some of the worksheets, and I hated doing it, I have to admit, I surely did not enjoy it. But once I had done it, what I realized it was forcing me to think in a very specific way about the different dimensions of David's life and what what they needed to look like. So that when I started to visit agencies, which is another thing I did, I already knew what I was looking for, because those worksheets forced me to articulate, not just my vision for David's life, but what that would look like what kind of supports he would need, what kinds of things he enjoyed, what kinds of things he didn't enjoy, what kind of technology he would meet, and so many other things. So by the time I started visiting agencies, I had a picture in my head of what I was looking for, and I had written questions that would enable me to get out or try to get at the information that I needed from a given agency to make a decision whether to put them in the yes, I'm interested pile, I'm not sure pile or no way. Is this going to be a good fit for my son?

Patrick Cadigan: 11:43

As we have talked with others, as well about this process? How did you differentiate that? Like, what helped you to understand that,"Okay, this agency might work better for me, versus this other agency where you know, I'm not really getting a good feeling about them?" Was there a tried and true method that you would use?

Jane Plapinger: 12:04

One thing that was very helpful when possible, was to visit the agency, and I was doing it at this at the tail end of COVID. So that was very challenging, because a lot of agencies were not doing in person tours. And I did a few virtual tours, I think you organized if a few Meghan, and you really can't tell a lot from a virtual tour. I wanted to meet the people, I wanted to look at the facility, little things like is there a separate bathroom for the clients and the staff? And what does that bathroom look like? Isn't there isn't separate, is it clean, and there's just so many things you pick up when you walk into a place. I also learned that sometimes people would describe the kind of program I was looking for, or, or characteristics of a kind of program I was looking for. And then I would talk to a knowledgeable person, whether it was another parent, or some other knowledgeable person, like the transition coordinator at my son's school. And I would learn things about that agency that were different than what I had been told. So. And I think that what I was discovering was that agencies are changing, there's a lot of change going on in the DD field. And many agencies understand now that DDA is really pushing them to provide services that are community based, and very individualized and person centered, where people have more agency or control of for what they do and have more input. And their preferences are respected. And those are things of course I was looking for yet. Many agencies are on that path. And they're very well intentioned, and they know the language, they know how to talk about it. But when I talk to, like a parent whose child adult child was getting services from that agency, I would discover that a lot of those good intentions were not yet operational. So that it became really important, to your point, Patrick, not to just visit an agency, but to talk to people who are familiar, on the receiving end with those with the agency services, because, again, with all good intention agencies would sometimes make it sound like they were further along, again, being community based or being person centered, or being Employment First than they actually were able to deliver on.

Meghan Smallwood: 14:52

That's a great point because I know going on those tours, it's kind of like a sales pitch. You know, they want to sell you the program. And I know parents will ask the questions that are important to them. And a lot of times they'll hear oh, yeah, that's something we could do. That's something we could do. We could talk about that. But then they move further along, because I keep them in their yes pile. And then when they actually get to, you know, the specific meaning to discuss services, they're told, "Oh, no, we can't do that." So you're right. I think connecting with parents who already are, you're at that program with their their young adults is very helpful to hear what's actually happening. And I know you had your vision set, when you went on the program tours, and employment was part of that vision for him. I was telling parents after I heard you, you know, share your, your journey to our team, about, you know, making a vision, making sure you have a vision, because when you go in, and they're giving you the sales pitch, I feel like a lot of times they're looking for your sales pitch too. And because they'll say, you know, tell me about your child, and you have like, you know, 30 seconds to tell them something, and they're already kind of forming an opinion. Unfortunately, and I know, a lot of times parents didn't really know what they should say. But I think having that vision in mind of what you see for your child really would help to kind of frame the conversation a bit better, whether it's employment, whether it's just community exploration, whether it's, you know, volunteering just to get an idea, and put it out there.

Jane Plapinger: 16:23

Yeah, and it was interesting, because I was also warned by my son school's transition coordinator, about the other side of that person centered planning and acknowledging honoree preferences of individuals, and that is that some agencies have a very rigid definition of giving choices. And if everybody's going somewhere, say volunteering, and my son's asked, you want to go? And he says, No, he's never done it before. He's not sure what it is. So he just says, No, they'll say, no problem, you can stay back where my child needs guided choices. He needs an agency that would say, Hey, we're all going volunteering today. Because they, he will have a chance to be exposed to that activity. And then, after he's had a chance to try it, they will one see, absorb and see if he likes it. And two, they'll ask him afterwards, do you want to do this again. So I was paying attention to that as well. So there's these continual arms around certain characteristics of agencies, that could be either too much of something or, you know, too little. Another thing that I did that was really helpful is I had a life planning meeting that I convened with all the key people in my son's life. That helped gather information that fed what I had already put down on paper, when I was going through the Parents Place of Maryland training. So I had a fuller idea. His school staff were one wonderful they sent videotaped interviews, in response to questions I had send them. And his CCS, his Coordinator of Community Service has showed up and she was furiously taking notes for his person centered plan. And family members were there. And they not only got to contribute, because they saw a different side of my son, they saw what he looks like in the community, but they also learn all about his adult life and how they need to think about it. Because I'm not going to be around forever. And that's one of the things that a lot of parents are hit with during the transition process, as well.

Meghan Smallwood: 19:01

When did you have that meeting was that the beginning of visit exit year, the year before?

Jane Plapinger: 19:07

I had it at the beginning of his exit year. So it was after I'd gone through the training and was familiar with the templates. And I had somebody facilitate it, which was wonderful, because I could really sit and listen and take in what what people were were saying about my child. And and I was so surprised, because you know what they say, every parent is an expert on their own child. And it's true, and it's also not true, because I heard things about him that were really helpful. And a lot of it was the strengths. And it's sad to say that often parents are very focused on the deficits because during all those school years, you're told it's never catching up and there it's all about the IEP and have the supports that your child needs. And unfortunately, it's often very deficit based in terms of how parents experience all of that. And thinking about planning for your child's life, adult life is anything but deficit based. It's it's like a total 180. It's, oh my god, this, I want him to be happy, healthy and safe. And this is what it's going to look like. And these are the supports that he's going to need. But it's, it's a total flip. And once I made that transition, I stopped feeling so scared, and I, I still was stressed. But I felt there was a balance or be excited about looking for the life that would include the things he loves to do, and the support that he would need to do those things.

Meghan Smallwood: 20:53

That I think the most important thing, like, I know, it's a scary transition. But I think, really looking at the positive. And I know, you know, what's there, we talk about what's the good life, what's the meaningful life for them. And I love that thought, you know, it's, let's think of the good things to come there. You know, they're graduating, they're going to be moving on and doing what they truly love to do just like everyone else. That's our all of our goals. So I love that I think that's a great way to look at it. And know, it wasn't all easy and positive. I know, there was challenges, what would you say was the most challenging milestone for you throughout the whole process?

Jane Plapinger: 21:33

I think there were two challenges for me. One was figuring out the residential and the meaningful day services, and how I need to pay attention to both of those, because they're totally different services. And some agencies only do one of them. Some agencies only do residential, other agencies only do meaningful day services, some agencies do both. I didn't know whether it was better to have one agency to do both. So I should only look at agencies that that could, or whether it's better to have two separate agencies, I also was confused because I was advised to look for residential first, because my son had to move July 1. Not August 1. Not September 1st, it's July 1st, so that there was a lot of pressure there. And I was told that once you know where he's he's going to be, then you can look for day services. However, I wanted to make sure he would be in a place where there would be day services, either from that agency, or a nearby agency that would meet his needs. So that was a that was hard to pay attention to both of those things. And the other thing that was tough to deal with, and it caused me a lot of uncertainty was how to deal with his behavioral history. Because he was doing so great. And he had been doing so great for four and a half years. I he wasn't even on a behavior plan. He hadn't been on a behavior plan in in several years. So I wanted to make sure he ended up in a place that could provide the behavioral supports he needed. And I was so afraid if I didn't focus on the behavioral supports, he might end up degressing after he you know, he had been so successful for four and a half years. On the other hand, I didn't want to exaggerate his behavioral challenges, because he wasn't having significant behaviors. And there are agencies that do not want individuals with significant behavioral challenges, and their agencies that are very eager and happy to serve those individuals. So that was a whole confusing piece. And I had some unhappy moments when I remember reaching out to one agency. And all this person wanted to ask me on the phone about was the behavior. She wanted to focus on. How bad was it what was the worst behavior and never asked me anything else about my child. And I remember talking to the transition coordinator afterwards and saying, that is one agency I don't feel good about. And she said, "Don't jump to that conclusion." And I was like,"What do you mean, don't jump to that conclusion?" And she said,"I know this agency. We've placed other individuals there. Once they're there. They take care of me really well. I think they just wanted to make sure they could support him." And if so, that's how confusing this all was. Because that was so off putting. However, that is an example of how I felt as a parent that I didn't have much control over the process as much effort as I was putting in. And agencies all had their own approach to asking for information about my child. And some of it was unsettling. Many agencies when I called them and I caught a lot of agencies, because of the residential and how hard that was going to be. A lot of the agencies wouldn't even tell me if they had any housing available, any residential service available, until I submitted all of David's documents, his psychological and his IP. And it felt, I felt like I was violating his privacy, sharing all this information with an agency that I didn't even know if I was interested in at the agency. But I had to go along with their process, even though their process did not feel good. And it didn't make much sense to me, also felt like oh my gosh, they're gonna spend all this time reading this information about this young man and his family might not even be interested in so I was worried about wasting their time. So it was a very, very confusing process. And it also found that many agencies, I think COVID had something to do with this, this, this, this was the tail end. There were agencies that we had interviews, we submitted all this documentation, I was doing all these follow up calls, trying to figure out, okay, are they willing to serve him or not? Should they be on the list or off the list, and I won't hear from them. And then it got to be like, end of March. And I was told you need to lock, my CCS said, "You need to lock this in the residential piece and how it has to happen on time." So I had to eliminate these agencies that we had put so much effort into, and they had met David had all this information. But they weren't get back to me. And then two of them, after I made a decision, reached out to me and said, Hey, we're interested. And it was past the timeframe that we could consider them. And actually one of them and I've made so many calls to this agency, because I really liked them. And they just wouldn't call me back I'm email. And when I went with this other agency, and I emailed them a thank you for going with another agency, the email I got back was, oh, we were so looking forward to providing services your son, but their day program and their residential weren't talking to each other. One of the other things, it was the residential that wasn't getting back to me, the people running the day services were very eager to provide services to him. So that was just another source of of confusion.

Patrick Cadigan: 28:11

So this is where we are going to pause the conversation. So please come back for episode 44, so that you can hear the rest of the conversation with Jane and dig deeper into what the transition process look like for her and David. Before we let you go, however, we wanted to share out our Well Thats Helpful resource with you. Now, this is something that we hinted at last week, longtime listeners of the show know that for about two years now we have been hosting our sister site www.postsecondarytransition.com. In fact, it was actually the website that happened before the podcast did. Well, we recently updated that site, we have completely rewritten it from the ground up, so it has a very refreshed look, but it still has the same great content. We're continuing to add content as fast as we can. If you surf to the new page, check out the Resources tab, you'll find links to pages that include our acronyms and definitions page, page on SSI, Developmental Disability agencies, and there already is a lot more and there will be more to come. And each page has additional links and that's going to lead you to even more information. So please go check out our helpful resource www.postsecondarytransition.com. And with that, Meghan, do you want to sign us out for this week?

Meghan Smallwood: 29:41

Yes, definitely. So as always, you can follow the information from this conversation in our show notes. Like following please share on the podcast. We want to share this information with as many families who need it and we need your help to do that. Visit our YouTube channel where we've posted videos of all our conversations, including doing Some of the legwork for you by curating videos of topics that revolve around transition. We've created playlists that cover guardianship, alternatives to guardianship ABLE accounts, and still more to come. So be sure to subscribe there as well. And finally, check out our website, which is chock full of information around the transition process. We recently redesigned the site from the ground up, and we think it's the best website out there to share information about the transition process. So go to www.postsecondarytransition.com.

Patrick Cadigan: 30:31

All right, fantastic. And this was the end of part one. We will be posting part two very soon. Please come back and finish out this amazing conversation.

Meghan Smallwood: 30:41

Fabulous. Thank you, everybody.

Patrick Cadigan: 30:42

Thank you.