DONNA: Hello. I'm Donna Owens, program director at the Family Center at Ocali. Our webcast today is called "Introducing Your Child to Others." One of the challenging tasks that parents of children with disabilities face is introducing their child to others, that is finding a positive way to tell others about their child's unique characteristics. With me today are two parents, Scott Short and Judy Marks who have developed their own solutions to this challenge. And I hope you'll be able to consider these ideas and adapt them for your own child. Welcome Scott and Judy.
JUDY: Thank you.
SCOTT: Thank you.
DONNA: Our first example is the picture book. Scott Short is the father of Carlyn [PH] who is now in middle school and she has autism. He and his wife, Julie, created the picture book to introduce Carlyn to her peers. Scott, could you read us a couple of pages of the picture book?
SCOTT: Sure. Carlyn is just like you and me. She likes to jump on trampolines, swing, ride bikes, swim, and ride rides, especially roller coasters. Like us, she goes to school to learn and make friends. There are many things she can do well. Sometimes she needs a little extra help, though. Carlyn uses her hands and a machine to communicate with us. How can we help? Even though she can't talk, she can-she still needs to hear us talk to her. We can learn some sign language and use her machine to communicate with her.
DONNA: Scott, so why did you feel that it was necessary to develop the picture book to uh describe Carlyn to her friends?
SCOTT: Well our daughter is non-verbal and-and we felt the need for her classmates to have more of an understanding uh of what she accomplishes in her daily uh activities. And um we wanted the-them to-to see that she's a lot like them and there's a lot in common with her um such as swimming or-or horseback riding. So we wanted to make sure her classmates uh-uh would see that she's a lot like them. And-and also we wanted to show um for them to have an understanding of some of her sensory needs. Uh that was important for us to figure a way to get that out in some fashion. So that's where I think that's where this started.
DONNA: Mm-hmm. Very good. Um and I noticed that each year, you developed a new picture book. And can you just explain why you felt like that was necessary?
SCOTT: Well I think it's important for her peers to-to uh see her newfound interests and what she's accomplished uh as well as uh keeping the book age-appropriate. Um so um so her peers can better connect with her. That was important for us.
DONNA: Mm-hmm. Mm-hmm. And I also noticed that you add in there the-the question how you can help. And did you and Julie talk about that a lot, about how you wanted kids to respond or the reason for that?
SCOTT: Yeah. I-I think with some of the pages the idea was um to-to have the question that maybe a peer or classmate would ask and have a-a decent answer for them on the page uh so they're more comfortable with how they can help instead of just the idea of wondering, "What should I do?"
SCOTT: That's-that was partly why we felt a need to-to make the-format the pages like that.
DONNA: Right. I-I-I was impressed with that. I was impressed that you-you point out the things the way that Carlyn is like her peers, but you also point out some of the challenges that Carlyn faces.
DONNA: And that some of the things then that her peers might be able, a way that they might be able to respond to her...
DONNA: ...in a way that would uh that would help her deal with the situation.
SCOTT: Right. It was the idea of looking at both of those areas and-and trying to mesh them and bring them together.
DONNA: Mm-hmm. Mm-hmm. Uh now I-I-I noticed that you-you used lots of pictures of things that Carlyn enjoys doing and in some that you've explained this, but I want you to give some more-more-some more thought to that uh about why you felt like that was so important, riding the trampoline, riding the...
DONNA: ...roller coaster. I noticed uh in the later books she could pointed me out horseback riding.
SCOTT: Right. Well I-I uh the visual piece of her in action and performing the activities I felt was more beneficial than just using wording.
SCOTT: Um-um I think that her-the peers better absorb what they're reading if they have the visual piece and the pictures. I-I think that's-that's made a difference. The right picture can say so much.
SCOTT: I-I think the pictures are very important component of the book.
DONNA: Mm-hmm. What has been your daughter's peers' responses to the picture book, uh in-in particular, when you first introduced it?
SCOTT: Um well I-I think um that her peers and her classmates became more comfortable with her being involved in classroom activities. Um I-I think at this point, there's more of a comfort level in the classroom. Um and the interest with peers being more involved with her daily uh school schedule as well as-as outside school activities that are uh. We've heard comments about uh Carlyn and-and her riding 4-wheelers from the kids and-and how they couldn't believe that she enjoys that. Or diving off the high dive at the public pool was a big deal for them. Um so it's um-it's um. We've seen kids talking uh in the hallway with other kids explaining, "Hey, make sure you use your quiet voice when you're doing this task with Carlyn." So we're seeing that the kids are receiving the book well and it's obvious that uh they've read the book. Uh and that's good.
DONNA: And I also have this question: When you introduced it, how did you introduce it? Was it class-wide, was it peer by peer?
SCOTT: Uh I think the idea was to go in class wide um starting with the-the teacher involved or if it's us coming into the class as well to read the book. Um, you know, while Carlyn is out of the classroom obviously. But the idea was to make it a whole class-the whole class involved with it. Uh so when we started, uh we-we went in and maybe read the book through at a moment. Um you know first grade or when we started uh we read through the book with the class and then let them ask questions about uh Carlyn and uh some of her needs and likes. And then it got to the point where we could leave the book in their library in that classroom so the teacher could get it out from time to time to-to uh-to bring them uh back to-to knowing some of Carlyn's needs and such. Um and so it got to the point where the book would stay all year in the classroom in their library.
SCOTT: So it was interesting to see kids interested in taking that book and checking it out and taking it home and reading it or showing their parents. So um we're pretty pleased with that.
DONNA: Mm-hmm. Yeah. And what was Carlyn's reaction to the book? Do you have any?
SCOTT: I well I-I think she uh enjoys people getting the opportunity to see her in action, which is obviously the-a difficult piece for her with the communication. So I-I think that she has an understanding with the purpose of the book. Um and-and I think she-she likes the idea that classmates can approach her and-and have conversations about some of the things that she enjoys.
SCOTT: So um uh I think it's been very beneficial.
DONNA: I know that you-you uh and Julie...
DONNA: ...developed this book to introduce Carlyn to her peers.
DONNA: Have you found it helpful in introducing Carlyn to others? In what other situations have you used the book, Carlyn's book?
SCOTT: Well I-I think the book has helped her staff uh throughout her school uh principal uh current and future teachers and paraprofessionals, custodians, and cook workers, uh and so on. Uh I think it's been vital in um transitioning to new classroom environments and uh from elementary to junior high, it's played a big role in that. It's uh the book's been beneficial with um-um recreational and church events uh as well as uh clinical settings. Um so um anyone becoming involved with Carlyn or interested in Carlyn uh can find a convenient moment and read through this book and get a jump start. And I think that's a wonderful place to begin.
DONNA: Mm-hmm. Thank you, Scott. Thank you for that.
SCOTT: Sure. You're welcome.
DONNA: Okay. The second example we're going to discuss is the learner snapshot. It was developed by Judy Marks, the parent of two children on the autism spectrum. And one is now in college and the other is now in middle school. Judy, could you list some of the elements that you include in the learner snapshot?
JUDY: Sure. There's a lot of elements in the learner snapshot, a few being how the child learns best, their special interests, their strengths, their challenges, things that upset them, um their motivators and preferences, things that calm them and I mean general modifications and also transition needs and social supports are also listed in the learner snapshot.
DONNA: Mm-hmm. That's a lot of information. Well let's start with what inspired you to create the learner snapshot?
JUDY: Well several years ago, um I was in a training for behavior by Brenda Smith Miles and she was introducing the caps. And through the caps, she was talking about the learner and the learner snapshot, getting a snapshot of the learner and using as a holistic approach for the child as seeing what their needs are. And she was listing a few of these that are in this learner snapshot and I asked her if I could take what she had already provided and expunge on it.
JUDY: And she said, "Run with it."
JUDY: So and I did. And I was like this could help my child a lot so.
JUDY: I said, "This information's needed."
DONNA: Right. So you're-you created it as a tri-fold?
DONNA: So you've got the tri-fold there. I noticed you've got the picture. You've even got the school year there um as well. And so it's a tri-fold brochure, both front and back.
DONNA: Mm-hmm. But you've also created it in a Word document?
JUDY: Yes. As my child grew older, he no longer thought this was age appropriate as he was entering college and working with the service providers and community agencies. Um there's some that he-some information he wanted to disclose as in his disability and some others he did not. So he picked and chose what he wanted to disclose in a letter form, which he thought was more professional.
DONNA: Now Judy, in the learner snapshot, you include a number of different areas, not only your son's strengths and his challenges, but you list there things that upset. I was also impressed with signs that he's upset because sometimes those signs can be uh-they can be subtle. But-but if someone can pick up on them, they'd know, you know, they would know when to intervene. In addition to uh motivators and preferences.
DONNA: And I think on the back, you've also listed certain supports that you suggest. You've got a lot of information in-in just a little place. Uh and just what inspired you I think to include all those things and what did you decide was most important to have in there?
JUDY: What inspired me is that I wanted-I needed a tool to use to incorporate into the IEP, to go over um parent concerns um and needs for the child. And instead of writing paragraphs and paragraphs that someone may not read, um they have something that's bullet proof and folded that could stick in, I think they would read it better. Um and getting an understanding of my child and in getting to know all his areas, him as a whole person. But to also just not knowing like what his disability is and um [CLEARS THROAT] uh his learning dynamics and stuff, things that upset. Like for behavior, like what does he need as a person? What do you look for as in signs of being upset? So you can stop the behavior from happening before it progresses into a meltdown. Um what are the social supports that he needs...
JUDY: ...you know to make him more successful throughout his school day and within his home, school, community, and environment? So.
DONNA: Right. Well and can you tell me about what feedback have you gotten about the learner snapshot?
JUDY: I got a lot of positive feedback. Um a lot of times like school personnel would say, "Thank you." Um the recess people, the monitors were very excited because no one ever fills them in about your child. They wonder why-why do we have to watch like Cody run off um because he might escape.
JUDY: Because that was the thing that um he would do. Someone was watch, he'd just leave. He was a runner. And uh so they were very happy to get some information on that as well as providing it to his physicians'-physicians' office, all, you know, medical specialists, and um community agency providers that work with him as private...
JUDY: ...related sources as well.
DONNA: Mm-hmm. So this is not just specific to school? You've-you've applied this to uh?
JUDY: Right. It was originally designed for school for an IEP because I needed that input piece.
JUDY: That was important to us. Um but knowing that everybody else wanting this information, even grandparents and aunts and uncles were like, "Hey, thank you." Because if they wanted to babysit, you know, it's-it gave them a little gist of huh, this is what-things that upset, so I know that maybe I should turn his attention to something else.
DONNA: So and now we've talked about your son, but tell me this: Once you developed it for your son uh have you used it for your daughter as well?
JUDY: Yes, the first time I used it was in 2006 so um 2009 was my son's social graduation. 2011 he just received his diploma. So my daughter was still young. Um we used it in her school to tell her-her school district about her disability as well as give it to the professional staff for medical doctors.
JUDY: So and a couple of friends, too, personal friends because some stuff you might not want to disclose.
DONNA: So you make choices about...
DONNA: ...where you share and how you share? And it sounds like you also consult with your children about, "Are you comfortable with this is what I'm going to take to this meeting that?"
JUDY: Yes. As they got older, you know, they expressed what their needs were.
DONNA: Right. As kids do.
JUDY: Right. And you know and as my daughter being in eighth grade, she'd rather have something in the letter form.
JUDY: And now, she doesn't no longer think like this is age appropriate or does she need this because her verbal skills are pretty good, her self-advocacy skills.
DONNA: Mm-hmm. Mm-hmm.
DONNA: So it's kind of changed as-as it's developed and changed for the use of what they're comfortable with, too.
DONNA: Yeah. Mm-hmm.
JUDY: They can choose what they want to be provided in here and what doesn't. I know like when we started out, my son was, you know, less non...
JUDY: ...less verbal, you know, didn't speak until 13. So knowing that to give these thoughts and ideas across was important to me.
DONNA: Now I know also that you do uh work as a parent advocate. Is this a tool that you use with the families and with the children that you represent?
JUDY: Yes. Not all. Some parents can choose this. It's an option...
JUDY: ...if they would like to-to do a learner snapshot profile of their child. Um some actually do well something like Carlyn's story.
JUDY: Um but just a short, short version of that. And uh some just like writing paragraphs so it's-it's up to the-the parent if they like to incorporate it or not.
JUDY: Or like to fill it out so.
DONNA: Mm-hmm. Well thank you, Judy and thank you, Scott. I think you've both found ways to convey information to people and to peers uh about your children in a way that makes them a lot more understandable and sets a positive framework, I think, for your children to interact with the world. And I want to thank you for being willing to share that with us.
SCOTT: Thanks a lot.
JUDY: Well thank you for having us.
SCOTT: Yeah, absolutely.
DONNA: Thank you. And thank you who are viewing this webcast. And if you should have any questions, you can email me at firstname.lastname@example.org.