August 13, 2020 | Stella Beard; Kellie Smith
Stella: Well, good morning everyone and happy Thursday. I am Stella Beard with Kentucky SPIN and I’m so happy you’ve joined us today for our presentation on Letting Go, Creating a Successful Transition to Adulthood. We are happy that you’ve joined us.
[00:00:18] And just a little bit of housekeeping before we get started, if you have a question throughout the presentation, on your d...
Stella: Well, good morning everyone and happy Thursday. I am Stella Beard with Kentucky SPIN and I’m so happy you’ve joined us today for our presentation on Letting Go, Creating a Successful Transition to Adulthood. We are happy that you’ve joined us.
[00:00:18] And just a little bit of housekeeping before we get started, if you have a question throughout the presentation, on your dashboard you will see the little box that says questions. You can just drop down there, type your question in. And we also have with us Kellie Smith from Kentucky SPIN, and she will be helping and assisting with questions today. So we will pause throughout the presentation and answer any questions that might come up.
[00:00:47] Also at the end of the presentation there will be an evaluation for you to complete, but we also have handouts available. And so also on the right hand side of your dashboard, you will see a little drop down box, that says handouts, you are more than welcome to download those, print those out, however you want to do. And then, also know that within, I believe we have it sent out later this afternoon, you will receive an email that we’ll also have all of the handouts, the PowerPoint presentation and all of that will also be sent to you. And, a certificate of completion for attending today’s one hour webinar.
[00:01:34] So in one hour we are going to try to get through a lot of information, so bear with us as we try to get through this information. I will give a little, just a little warning, of course, as most of you know, we’re working from home. Fortunately our staff at Kentucky SPIN, we always work from home, but normally my children are of course off in school and doing their own thing. But, they are also here. So I have to send out this little email or message to everyone, tell everybody to get off the WIFI. I do have dogs, so they may bark. So I’m just telling you. Just be prepared. We never know is going to happen.
[00:02:16] But I want to give you just a little bit of information about Kentucky SPIN and let you know, what we do. We are, a 501-c3 and Kentucky SPIN stands for Special Parent Involvement Network. And the mission of Kentucky SPIN is to link families and individuals with disabilities to valuable resources. And our goal is to enable them to live productive, fulfilling lives. And we are funded by the US Department of Education. We are a part of the parent training and information center grant that is also funded and mentioned through the Individuals with Disabilities Education Act. There is a PTI in every state and Kentucky SPIN is the one for Kentucky.
[00:03:02] Just a little bit of information, also we do not act as attorneys. However, we empower families to effectively advocate for children. So therefore we do not represent families and we do not attend IEP meetings, but we feel like we give them the adequate information and tools that they need for families to be better advocates for their child. We provide that peer support to help families access that needed information and resources. And all of our staff are either parents of a young adult or a child with an intellectual developmental disability, a sibling, or also have a disability themselves. And we have been the parent training and information center for many, many years, actually since 1988. So we’ve been around quite a while.
[00:03:51] So as we get started, I love this visual here. I am very visual and so I like to see things that make sense to me. And in the first image, it is assumed that everyone will benefit from the same supports because in this particular image, everyone is being treated equally. So that makes sense.
[00:04:12] But in the second image, individuals are given different supports to make it possible for them to have equal access to the game. So they are being treated equitably and I have a hard time saying that word for some reason. I don’t know why I do, but I do.
[00:04:29] But in the third image, all three can see the game without any supports, or accommodations because the cause of the inequity was addressed. So the systematic barrier has been removed.
[00:04:44] And I think that is real, real important because we focus on accommodations and modifications, when a lot of times there is just a systematic barrier that needs to be removed. So I do love that visual and I hope you all to do.
[00:05:01] So we’re going to talk, talk about transition today and guess what transition is in your future. And it simply means moving from one place to another. But something we need to remember is transition is going to happen, whether we want it to or not. So it’s best to be prepared for the future instead of later and it just kind of creeping up on us.
[00:05:26] But as parents, we all want our children, and I put a little phrase in there with or without disabilities, to be safe, happy, included, and productive. But our job as a parent is not to only make sure our children are happy, but to also keep them healthy and safe. And we want to ensure that they have a good life. So when parents first learn that their child has a disability, they may experience feelings of grief. I know I went through that, my son was diagnosed when he was nine months old with Williams syndrome. And I remember hearing those words and was just at a loss because I’ve never heard of that before. And therefore my whole world changed. So I definitely went through that feeling of guilt.
[00:06:15] But one thing I always wanted is I wanted him to have a good life. And that’s so, so very important. But grief has many stages and it may include a wide variety of negative feelings, but all of these feelings are perfectly valid. We need to allow ourselves to mourn the loss of our original dreams and know that acceptance and hope are sure to follow. I will happily tell you that my son is now 24 years old, he’s doing great. He has a job. He works out in the community, has a girlfriend. And, you know, I really feel like he is living his best life, as happy, included, and productive as that slide shares.
[00:06:54] This is one of my favorite quotes. It says the future is not something we enter. The future is something we create and creating that future requires us to make choices and decisions, and they all begin with a dream. So guess what parents and professionals, whoever is on this call today, we know our children the best. We will be the advocate on their behalf until they get old enough and learn to be a self-advocate. So remember the goal should be independence, but the road independence is hard and always remember, what’s cute at six, isn’t cute at 22 or 23 or 24.
[00:07:37] So I do see a lot of families that try to keep their young adults still that eternal child where they don’t do things that are age appropriate. And I truly am a believer of that our young adults, even if they do have an intellectual developmental disability, still need to be doing things that are very, very age appropriate. And they had the same dreams, wants and desires as we do. I know my son does. And so we need to be [inaudible] sure that we always remember that.
[00:08:11] I know right now, we are going through a pandemic. We are going through a lot of things and school is not starting back and everything is going to be virtual for a while. And this and that. I want to talk to you today in this presentation, like we’re back in school and things are going the way they should be, because guess what, the law is still the law. So we want to make sure that you do that and understand that.
[00:08:36] And if there’s anything COVID-19 specific related to education that you want, we are providing every Tuesday, we call them our Tuesday Tips day and we are focusing right now on COVID and education. And so I highly encourage you to register for those webinars. You can go to our website and do that. They’re every Tuesday at 11.
[00:08:55] So today, though we are going to be talking about what, what IDEA says, or the Individuals with Disabilities Education Act says, and what that IEP is supposed to include regarding transition.
[00:09:08] So beginning, not later than that the first IEP to be in effect when the child is 16 and updated annually thereafter. So I want to share this though, in Kentucky transition begins in the eighth grade or age 14, whichever comes first. So that’s when that child, that student should start being involved in that IEP process. And we actually have a webinar coming up on young adults being involved in their IEP. So I would highly recommend you register for that.
[00:09:38] But appropriate, measurable goals based upon transition assessments, which relate to training and education, employment, and independent living skills. And a list of transition services, which includes the course of study. So what do they want to do be when they graduate? What do they want to do? All of that should be included in their IEP and in their goals.
[00:10:00] And also beginning not later than one year before the child reaches the age of majority, that is 18 in Kentucky a statement that the child has been informed of their rights and they will transfer to them when they turn 18. All of that is included in that IEP. And we’ll talk a little bit more about that in a minute.
[00:10:19] Now, these are just some examples of what a postsecondary goal should look like on a student’s IEP. I’m not going to read them all. I’m just going to pick out a couple. So the third one says after completing high school, Karen will obtain a four year degree from a liberal arts college with a major in elementary education. Now that is a very specific goal. And the key words as you’ll see at the bottom should say, will attend, will increase. These are measurable goals. It shouldn’t say Stella hopes to graduate from high school and maybe she might attend a college. Those are not measurable. You need to have those keywords that are in there.
[00:11:01] And I want to read the second or the fourth one upon graduation from high school, Jason will attend Central Piedmont Community College and participate in the welding industry certificate program, meeting the requirements to attain an entry level welding certificate. So as you can see those are very, very measurable, attainable goals that are very specific. And that’s the way [inaudible] goals should be read. They need to be specific, [inaudible], specific, measurable, attainable, relevant, and timely. So I think that is very, very important.
[00:11:45] So, what does the law say about how the IEP goals should support the transition goals? Well, it kind of says a lot. It says for each postsecondary goal, there must be an annual goal included in the IEP that will help the student make progress toward that postsecondary goal. And some of them are just this. I’m not going to read them all because you are very capable of reading them, but demonstrating work habits for career choice, learning self-advocacy skills. Yes, that can be written into an IEP. My son had those self-advocacy goals on his IEP when he was in high school.
[00:12:18] Developing interpersonal skills, learning their legal rights, reading strategies, mathematical procedures. And also interviewing, resume writing and completing applications. These are very, very key things for a student that is so very important. And transition assessment and evaluation data is continually revisited to affirm those postsecondary goals.
[00:12:44] A goal is not just written and then never looked at again. It’s so important that they’re meaningful to the student and does it reflect the students’ interests and performances? So I think that’s real important. If a student wants to go into music when they exit high school, they need to have music classes while they’re in high school. And that should be very, very important and should be on their IEP.
[00:13:09] So these are just a few tips for parents, or it could be for professionals also about transition planning. We’re going to talk about it though specifically as if it was a parent. But talk to your child about their hopes and dreams. Guess what? It’s not your hopes and dreams, it’s their hopes and dreams. And that’s something I had to learn, that just because I want Clayton to do something doesn’t mean that Clayton wants to do it. He’s a 24 year old man and he needs to learn how to make his own decisions now and create his own hopes and dreams.
[00:13:43] And think of creative ways to help them achieve those dreams. You know, sometimes we just have to throw away the box. I know we say all the time think outside of it, but sometimes we just need to get rid of that box that we have been put in to think that there’s only one way to meet certain goals.
[00:13:59] Schedule a person-centered planning meeting, and invite important people in their lives, other than family. And that I believe is so key, especially when we’re wanting them to find their own hopes and dreams. It can’t just be family members in their life from now on, we have to begin to make that circle bigger. And we’ll talk about that in just a few minutes.
[00:14:22] Make a list of skills that they know they need to work on to reach those goals. That’s a vital one. Remember this is their life, not yours, and it’s hard as it is to think about we will not always be around. There are many things we can do to help them prepare for their future, and teaching them independence is one critical way.
[00:14:43] So here’s some possibilities and look for and create opportunities to practice these skills at school. As I said earlier, encouraged students to participate in and lead their own IEP meetings. That is so very valuable. And that’s the webinar that we have coming up that Kellie will be presenting. So check that out on our website and register for that.
[00:15:05] But introduce themselves and others they know. It’s very, very important that they’re able to do that. That they’re able to share information about their disability at their comfort level. You know, don’t let it be the white elephant in the room, let them know, you know, yes, you do have a disability and here it is. And here’s some of the things that you will struggle with possibly, are things that we may need some extra help with. But here are your strengths and focus on those as much as possible.
[00:15:37] Use pictures, drawing, storyboards, portfolios, technology, video to portray their school day. These are great ways that your student or your child can participate in their own IEP meeting. When Clayton was able to start attending those meetings, at 14, we created a PowerPoint and he did that PowerPoint at his IEP meeting. And it just talked about the things that he knows are his strengths and maybe some things that he’s interested in, but also things that maybe he struggled with, that he needed additional help with.
[00:16:11] And help them understand how to develop certain sections of their IEP. Talk about it with them, let them know don’t let them just sit in those meetings and not participate. And ask teachers about classroom progress and performance. What are they doing well in the classroom? What are they seeing that they do need help with? And give feedback on accommodations and modifications. But getting the student involved early in their IEP process will help them understand the importance of the meeting and being a part of it.
[00:16:42] So this slide talks about some questions that we can ask our student or child to help them prepare for transition planning. The two images that you see at the top are some of my favorites, it’s called a PATH. And the goal is always, at the end and all those little blue blocks in there are ways that we can get them to their goal and how we can make that happen. And I think that’s real, real important. It’s what’s going on now in their life. And what they need to work on to get to those points.
[00:17:16] And it’s so important to have a visual because, you know, even though it might not look as pretty as this one is, put it up somewhere where you can see it. I think that is so important, but here’s some questions. What does the young person want to do with his or her life? Remember, it’s not your life, it’s theirs.
[00:17:31] What are his or her dreams, aspirations or goals? What are their needs, abilities and skills? Some outcomes that the youth, and even you want, how can all of that be incorporated? When will they graduate? What kind of diploma option will be the best? In Kentucky, we only have two options, it’s either a general diploma or an alternate diploma. My son Clayton exited high school with an alternate diploma. We can discuss that in a future webinar, but I think that’s really important that you know, those are the only choices that are available.
[00:18:05] And are work experience class is appropriate to reach those employment goals? How could the education and transition program be more integrated into a regular program? And who will attend the IEP meeting, is it time to invite outside agencies? For example, like a vocational rehabilitation.
[00:18:24] And then person-centered planning. This is something that I’m very passionate about because it’s an ongoing problem-solving process used to help people with disabilities plan for their future and groups of people focus on that person’s vision of what they’d like to do in the future. And those two graphs at the top are just examples of how person-centered planning can help them prepare for their future.
[00:18:49] Now we did a whole webinar last week on guardianship. So I’m just going to touch on it just briefly. But guardianship is a legal relationship between an adult, the guardian, and either a minor or a person that’s under 18 or a legally disabled person. And so what that means is they are found disabled by the court and unable to care for their personal needs or be able to manage their financial resources. But there are many, many types of guardianship and we’re not going to go into them all.
[00:19:20] But one of the things I do want to share with you is when my son turned 18, I did become his legal guardian. I really felt like at the time that that was the best thing to do in our situation. Now, when I look back on it, I really wish that I had done some other steps first, but, you know, that’s okay. But what we do as parents is we tend to go from wanting the least restrictive environment when our kids are in school, we want them in an inclusive setting, we want them with their typical peers. We do not want them in special education classes. We want them with those that are important around them. But when they turn 18, we immediately go back to that most restrictive, which is full guardianship. But there are many other options to choose from. But you have to decide what’s right in your situations.
[00:20:11] So the next few slides, we’re going to talk about guardianship and just some alternatives, that I think will help you understand that there are other options out there available. So, what we do now is we actually petition the court again and had Clayton’s guardianship reversed. So I became his power of attorney. And what that did is that gives me the ability to make certain decisions on his behalf, so I can help him with medical and financial decisions. And that might be something that will work, for you. I will say this, it’s easier to get guardianship than it is to get it reversed. So before you go to that most restrictive, reach out to me or someone else at our office. And we’ll be more than happy to talk to you about that. Reach out to protection and advocacy, and try to get some other scenarios before you go to that most restrictive.
[00:21:07] If your child receives SSI, social security can also designate someone as a rep payee. And what that does is it allow someone else to manage those funds for another person. But that decision comes directly from the social security administration, it’s not something that you can just decide you want to do. But having a bank account and a co-signer helps with money management skills. How we do it in our household, is we do, Clayton has his own check an account. And he has a debit card, that he uses because cash is just not something that’s real easy for him. So we use that debit card and he provides his receipts. And then we go back and we talk about them and we keep track of the money that he’s spending. And that helps in our household. I’m not sure how to work with you, but that’s what works for us.
[00:21:52] But supported decision making is also a promising alternative to guardianship and can become part of that doable power of attorney documentation, which is what we have done. We have that power of attorney, but we use it with supported decision making. And we have a team of folks around Clayton, that will help him make those much needed decisions and important decisions that he needs to make. If you have more questions about guardianship, we’ll be more than happy to answer those for you privately, but just reach out to us.
[00:22:27] So what is best? And here’s some questions to consider. You have to look at each person on an individual basis and understand, you know, what they need to know and what they know, and then just begin to work on it. So what do they need to know? Here’s some things to take care of their own personal needs, physical health, food, clothing, shelter they need, sometimes they need help with that. Do they need help to manage personal finances and resources? What skills do they need to know so they won’t be taken advantage of? And are there alternatives and supports available? But working throughout the years to identify what the person will need to live successfully in the adult world is so very, very important.
[00:23:10] And then providing skills and trainings in the areas of weaknesses. And that’s what we have done with our son. We’ve worked on those things that he may be struggling with. And then develop those circles of supports are using supported decision making. And what that really means is inviting other people in your circle. And then, you know, having them to be a part of that supported decision making plan so that your young adult knows that there are other people they can reach out to for assistance when needed.
[00:23:43] And supported decision making really, it’s just making the use of trusted friends, family members, and professionals to get the help we need to make decisions. This help can come in many forms, including, but not limited to evaluating a situation, weighing pros and cons, exploring options, offering advice based on experience and explaining complicated documents or concepts. And this is a website that you can go to. It’s called mychoicekentucky.org, and it is all about supported decision making.
[00:24:20] We’re very fortunate here in Kentucky to have a wonderful person that’s in charge of it here or is over the supported decision making plans here in Kentucky. Her name is Laura Butler, and you can go to that website right there and find out more information. This is who we went through when we were getting Clayton’s rights restored, from me being his guardian to then trait changing to his just power of attorney. And we went through that process. So I totally recommend that you go in. And when you received the PowerPoint, if you download it, or if you wait to get your email, those are all clickable links that you can go to and it’ll take you right to those websites.
[00:25:00] Now, this is another tool that you can use to just do some person-centered planning on, and I love this tool. Also at the top you can find more planning tools from lifecoursetools.com. They are all free and available for you to download, it’s a partnership with the Missouri family to family, and it’s just got some really, really wonderful tools and resources on this webpage.
[00:25:24] This is actually a life trajectory worksheet. And so you’ll see, we’re going to show you one in just a minute that’s kind of completed. So you’ll understand what that means. But on one side of the arrow, you want to list what the vision is for a good life. What do they want? What would it be that if they just could have it all, what would their life look like? And on the other side of the arrow, they’re going to list what they don’t want their life to look like. And I think that’s real important, that we do that.
[00:25:54] So I’m going to slip onto the next slide so you can see what one looks like that is completed. So for example, this is Shaylee and for her good life. These are some things that she wanted. She wanted to strive for normalcy. She joined 4-H, she began teaching self-advocacy, she dismissed her psychiatrist. So those are all things that she wanted to do. And then what were things that she did not want her life to look like, was, you know, she didn’t want it to be, she didn’t want that blatant disapproval of family choices and you know, that bleak prediction of future. So what she wanted to, she wanted to live independently, work with animals. She wanted control over her finances, and what she didn’t want was to be overmedicated, taken advantage of. And others making all the decisions for her.
[00:26:53] So I love this visual because it’s something you can put up, and just know that, you know, this is their life. This is what they want for their life. Not yours. I’m going to pause for just a second. And Kellie, is there anything that’s popped up that anyone has a question about or, anything that you wanted to share?
[00:27:16] Kellie: There are two questions. The first one is how far out should goals be planned? Or how far into the future should you set goals?
[00:27:28] Stella: Oh, that’s a good question. And I planned goals way out in the future, but that’s just me. As far as my son goes, just because he struggles sometimes with those goals and all of that, we do those smaller goals. That are in front of him, where he can see them and know, you know, this is what I’m working on right now. But we plan for bigger goals also. We just don’t focus on them as much for him. Just because it would overwhelm him. It doesn’t mean we don’t think about them or talk about them. That’s as far as his adult life goes. When he was in school, we did goals, but we also had those goals underneath of that big goal too, that made it a lot easier to attain that big goal.
[00:28:19] I hope that makes sense, but it just broke down the goal a little bit better. And, I think that is real important that you take that goal and you break it down into smaller steps. So I hope that answered it. If it doesn’t, we’ll be sure to answer it in more detail for you later. So what was the other one?
[00:28:38] Kellie: When do you think is a good time to start inviting the outsiders or outside agencies to IEP meetings?
[00:28:46] Stella: Well, that’s on an individual basis. How we did it with voc rehab, usually voc rehab does not want to start attending IEP meetings until the last a couple of years that the student is going to be in school. So if they are staying until they’re 21, then that means voc rehab, a lot of times might not want to come to maybe their senior year or their first transition year out of high school. I personally wanted them there a little earlier than that. And, you can start having them there as early as you want, from 14 on. So that’s up to you.
[00:29:21] You know, just go ahead and, and put it out there. Maybe you can at least start having connection with them and maybe start inviting them if there is, you know, someone else that’s a support specialist that’s working with your child that you think would be very important to have at that meeting. I would recommend that you invite them. I think that’s real important that it’s all based on the individual and everyone’s needs are different. So what worked for me and my son and what his needs were maybe different than yours. So you just have to look at it on an individual basis and where they are right now in that future planning.
[00:29:57] Is there anything else?
[00:29:59] Kellie: We did actually have one more question and a comment come in. What is the best way to help educators, professionals and even parents understand that guardianship is not the only option? I’ll often feel like as parents we are scared into guardianship at the IEP meetings.
[00:30:19] Stella: And I can’t, I feel like if you could see me right now, you would see me raising my hands and jumping for joy, because that is exactly what we have had many conversations about at Kentucky SPIN about that. And from someone who went to that most restrictive immediately at 18 out of fear, and usually the fear comes from a parent of, we don’t want them taking advantage of. Oh, my goodness, I’m not going to be able to attend IEP meetings anymore. What’s that going to look like if I’m not their guardian?
[00:30:48] First of all, I want you to go back and watch our guardianship presentation that we just did last week. It is up on our, I believe it’s up now on our Facebook page. If not, I’m sorry. Not our Facebook page, our website, if not, it will be shortly. And so go back and watch that because we do go into more depth about that, in that webinar. But what you can do is educate them yourself, and you go in with the other options. Go in with that sheet that was just on that other slide, talking about all the other options.
[00:31:18] And say, you know, I understand that it’s required by law for you to notify me because if you remember that slide earlier, it says that the school is required to notify the parent that at the age of 18, that their rights will transfer to the student. But what a lot of times parents don’t realize is that the student can just write a letter and have it signed and sign the letter and say, I want my mom to be at the meeting. I want my dad to be at the IEP meeting and that’s totally fine. Or they can just invite you themselves. So there are so many other ways that can occur. And you, the parent, unfortunately right now are going to have to be the ones to educate.
[00:31:59] We work with different agencies trying to get that information in the schools so that there are other alternatives that are listed. And I think we’re doing a good job of doing that, but they’re still always, you know, those schools that aren’t mentioning and it is just because they just don’t know. So educating them and providing them with the resources and tools from our website or from protection and advocacy, or other great resources out there about guardianship, that will help. And then also that one website I was telling you all about. with the supported decision making, mychoicekentucky.org that’s a great one to provide educators so that they can see that there are other options.
[00:32:47] Kellie: Awesome, those were the only questions. And I also, I wanted to offer a suggestion, when, you know, if you’re giving information that you’ve gotten from our website or from any other website and you’re working to educate them. Another thing that I think you could do would be, you know, talk to your PTA president. Or your site based decision making council or even the family resource center or the youth service center, about asking it, you know, Kentucky SPIN or some other organization to come in and speak at the school to parents and professionals that would be interested in coming.
[00:33:38] Stella: That’s a great suggestion.
[00:33:40] Kellie: I guess if you may not be comfortable because it’s, you know, those meetings can, as we all know, can be very overwhelming and often pretty scary for parents. And it’s lots of times, it’s hard for us to gather our thoughts. So if you’re not comfortable, you know, making those suggestions or speaking out, those would also be great right to invite other organizations into the schools.
[00:34:13] Stella: And that’s a great idea. And we can even prepare like a little packet even, if you just reach out to our office, we can prepare a packet for you just to give them too, and that might be, you know, might help a lot to say, hey, here are just some alternatives that I’ve found out, I just wanted to share with you. Those kinds of things are easy to and so, you know, just a great way. And most of the time, they’re always very receptive to getting resources.
[00:34:38] So going on now, this slide talks about Dare to Dream, and how do we get from here to there? So as we said earlier, brainstorm and think out of that box. And sometimes, like I said, throw away the box. Imagine what a desirable future could look like for your child and create new possibilities to build a better future. And always be thinking of teachable moments to increase knowledge and skills for them. This will begin to help them for their future.
[00:35:05] What we are really bad at as parents is enabling. If I could see some hands right now or, you know, Lord I know we’re probably all raising our hand right now going. Yep, I’m an enabler. I think we’re all, that’s just kind of the nature that we are. But we have to begin to create the atmosphere for them to fail sometimes so that they can learn. Because we’re all where we are today not because we’ve done everything right, but probably because we’ve done everything wrong. And so it’s brought us to where we are. They are no different, they have to learn the same thing.
[00:35:38] So I want you to picture right now that it’s the year after your child exits school, let’s just say they’re still in school. So what are they doing? Do they have a job? Are they attending college or a training? Are they connected to their community? What are they doing during the day and evening? Where are they living? Who are they hanging with? How will they get there? See those are important questions that help you plan for the future, because if you don’t brainstorm about what it’s going to look like, you have no way of knowing what goal to set to get there.
[00:36:14] So what we started to do early on with Clayton, when he turned 16, actually, we said, okay, Clayton, it’s time to get a job. And so he’s been working at the same jobs since he was 16. And so that says a lot about his integrity, but also his, you know, the goals and the limit, I’m sorry the, the expectations, excuse me, that we set for him. It wasn’t Clayton, do you want to get a job? It was Clayton, you’re 16. You’re getting a job. And so that’s what he did.
[00:36:45] So that’s because we started to think about exiting school, what it was going to look like. I didn’t want him just hanging around all day on the computer. We wanted to have those goals and dreams and everything set up for him. We’re now in the process of, hopefully by this time next year, he will have his own house here on our farm. And, he’s still always gonna need assistance, but we want him to have his own space, his own place. And so it’s really important that you begin to think about all those things and how you’re going to get there. And how those dreams are really going to come true.
[00:37:18] So speaking of dreams. Who’s dream, is it? Well, it should be all about the person and it should reflect on who they are and what their gifts and talents are. And it should help them live a life similar to the lives of people without disabilities. So inclusion in the community after high school needs to start though while they are in high school. If your child, or if you know students that are never around their typical peers during a normal day in high school, and remember, we’re talking about not COVID time, we’re talking about when they’re in school, if they’re never around folks in their community, how are they going to know what it’s like? So I think that’s real important that you get them involved in afterschool activities, that they stay involved, you know, doing things with their similar aged peers. So, so very important that we’re doing that now early on because it, it truly will make a huge difference when they are out of high school later.
[00:38:19] So these are just some skills that they need to know, not all of them, but these are skills that we really feel like are important. But communicating, learning how to communicate with others. Taking turns, Clayton and I do a presentation together to students with disabilities and professionals with disabilities, and we do the PowerPoint presentation together. But also that was twofold because I wanted him to understand communication skills. I wanted him to understand about taking turns.
[00:38:50] We talk about his disability in there, so we’ve kind of put all of these goals into a presentation that he’s able to do. And it builds on his strengths because he’s a really good communicator with people. So self-understanding including his strengths and needs. Their strengths and how to effectively understand about their disability.
[00:39:10] Know what self-advocacy means. Using their voice, sticking up for themself. And letting people know what folks need. That’s so very important. As we’ve talked about goal setting skills, problem solving skills. Sometimes we have to put them in situations where they have to make a decision, whether that be a right decision or a wrong decision before you will know if they’re able to handle it. And I think that’s very vital, we do that all the time. Kind of like role playing, social skills, social stories, all of that.
[00:39:44] Friendship building, how to learn how to have a friend without only talking about themselves all the time. Learning to listen, knowledge of their rights and ability to tell about their disability and request and those needs accommodations and I think those are real, real important skills that they need to know. So here’s a few more, you know, how will they handle their money? A need versus a want? yeah, you might want that new dress ladies, but you know how many times we know we don’t need it. And so we have to think about that and we have to teach our children those same skills.
[00:40:19] Budgeting, a debit card versus cash. I told you the debit card worked better for us. Navigating a store, giving them a list, a shopping list, and letting them go in that store and bring those up items and let them pay. Those are very, very important. When we go to Walmart, Clayton goes and he has certain things that he gets and he uses his card and that’s what he does. And it really has helped him navigate the store and understand where things are.
[00:40:45] Personal space issues. And that’s a real biggie, no letting them know, okay, shake hands this, you know, it has been very, very important right now because my son’s a hugger. So we have really had to talk about those personal space issues right now.
[00:40:59] Stranger danger, social media do’s and don’ts. Oh my goodness, as anybody’s shouting out there about that one. Medication when and what he takes and these are things we have worked on that have been vital to helping. And I know that they will be things that other people would need to work on too. And some of them, you know, are things that it might not, you might think, oh, I don’t even know about that. Or that’s not going to work and pick and choose and create your own skills that they need to know.
[00:41:31] But these are two things too, that are very important. They need to know about self-advocacy and that’s when they speak up for what they want, need or are entitled to. But then they also need to have self-determination, which is taking control of their own life by using a combination of knowledge and skills. Those are two different things. And so they need to know both of them.
[00:41:53] So I can’t always just invoke my beliefs and my wants and my dreams on him. He has to begin to know that self-determination is just to say, mom, I love you, but I don’t want to do that. And those are very, very important. It’s so important that we teach them those skills early on so that they’re able to do that when you’re not around.
[00:42:18] So here’s another quote. If you don’t know where you’re going, any road will take you there. But I promise you it’s so much better to have a plan, because when we’re just driving, you know, aimlessly down the road, that is no fun.
[00:42:32] So I love this slide. Growing up means growing apart, inviting others in, building natural supports and taking acceptable risks and the gift of failure. As I said, we’re all where we are today not because we’ve done everything right, but because we’ve made mistakes. But there are two gifts that we should give our children. One is roots and the other is wings. We have to allow them to fly, even when we know that they might fail. Because guess what, they’re going to learn from those mistakes. It’s just like the baby bird that’s in the mother’s nest. What does that mama do? Eventually the mama has to push that baby out of the nest and they are going to learn to fly. And that’s what we have to do for children, we have to begin to let them make their own mistakes so that they’re able to have those roots and wings to fly.
[00:43:30] So I want to talk a little bit about these pictures. Barriers such as overprotection are usually more disabling than the limitations imposed by a person’s physical or mental disability.
[00:43:43] So think about that. I’m going to read it again, because I want that to sink in. Barriers, such as overprotection are usually more disabling than the limitations imposed by a person’s physical or mental disability.
[00:43:57] What we do guys is we tend to answer for them. We tend to make sure that they have everything they need. We tend to make sure that there’s never, they don’t ever make a mistake. So we are overprotecting them so much is that we are creating a more disabling limitation on them than their own physical or mental disability does. So really ponder on that and think of your own life, or your students or your child and think about, am I really doing that because I promise you more than likely you’re going to answer. Yes.
[00:44:30] So this first picture here on the left is my son Clayton. And that’s when he first went and got his ID. When he turned 16. Now Clayton is 24 now, he does not drive, but he has a personal ID. And I can’t tell you how many times we’ve needed that. So think about it. Do you have a son or daughter that’s 16 and they have a disability and you say, well, they’re not ever going to drive or whatever. Go ahead and get them that personal ID. It is so rewarding.
[00:44:54] The second picture was we were at a big Rally at the state Capitol. And, I was up in the balcony. I wasn’t even anywhere near Clayton and he is doing self-advocacy here. He is out talking to at the time the Governor. And the Governor wasn’t even supposed to be at this event, but he went across the hall to the office and brought the Governor kind of out into where all the people were. And I love that picture. Someone else captured it for me, but it’s a perfect example of self-advocacy something that I was not there telling him to do.
[00:45:29] And then this other picture here is my sweet friend, Danny. And Danny he is the son of one of my mentors, who taught me so much about advocacy. And this was one of Danny’s outings. He is at a church in this picture and this was not his parents’ church. He wanted and desired to go somewhere else. And Danny was nonverbal, but they were able to pick up on so many of his wants and needs from just his facial expressions. And he was never happy at his parents’ church. And so when they hired some staff, the staff took him to their church and Danny lit up. And so I love that picture of self-determination that they were able to say, hey, this is Danny, and Danny wants his own life outside of his parents’ life. And I think that is so very important that we realize that.
[00:46:22] Well, how do you know what they want? Well, you have to take time to discover that and you have to begin to identify their personal preferences. And where are they at their best and allow them to do that. And these pictures show that. This is Danny again, out and about actually was in New York in this picture without his mom and dad around, he was on vacation with staff and they took him to New York. And he went around and saw things without his parents. And the other young man over here is out experiencing things in his community, without parents around. Having other people in their life is so valuable for them to learn new things and so that they can discover new things.
[00:47:03] And these are just repeats of what we’ve said, what activities and places do they enjoy going? And so one of the things that we like to share with people is to create this info sheet that you can share with others about them. So in this picture here, this is my friend, Danny. And this was his info sheet that he gave to staff and to others around him, of things that he enjoyed and things that helped people get to know him better. We’re not going to read it or go into detail, but it’s just a great example of how Danny needed that support and extra help.
[00:47:43] And then these were things on the second page, it was a front and back. And the second page, just talk about some of the things that he needed, that he needed staff to help him with, or that, you know, he wasn’t a morning person and so schedule those activities later. Interact with him like you would anybody else. So I love seeing this sheet because it really is a great way for someone to share with others. And the little quote at the bottom, love me for who I am, not for what you want me to be. And every time I read that, I almost tear up because I just think it’s so important. It’s a cry out for, except me for as I am, not who you think I should be.
[00:48:24] This is my son’s, vision statement, one pager, whatever you want to call it. It talks about his strengths. It talks about the needs that he has still, and then it talks about his accomplishments. I think that’s real important that we do that, especially as they’re older, and transitioning into adulthood that we talk about the things that they do wonderful. And then what works for him and they, what doesn’t work for him. And those are things that we share with people that he works with, staff, friends, anyone like that, that just gets to know Clayton a little bit better.
[00:49:04] But guess what guys, you have to have those high expectations. We have to practice every opportunity that we can. Social studies are a great way to practice and we call it Groundhog Day around here. So what we may have worked on yesterday, guess what we might have to work on again today. And there are so many opportunities out in the community that we can do to work. And so sports, get them involved in sports. Internships, school events, activities, that they can be a part of. And we talked about, you know, keeping them involved with their typical peers. And I think these pictures show that. Getting them involved in activities.
[00:49:47] The picture here, Clayton was crowned prom King when he was a senior in high school. And that was not a prom that was for kids with disabilities. It was his normal prom in high school. So I think that shows a lot. If he had been, you know, away from his typical peers, all through high school, that opportunity would have never happened for him.
[00:50:08] Remember that as you’re thinking of opportunities for your young adult to be involved in, or how kids in the high school can be involved, you know, make sure that you don’t know, all those options out there. And here’s some things in the community that they can do, you know, recreation, church, volunteer, work, socializing, traveling, making sure that all of those options are available for them on a daily basis.
[00:50:34] And this last slide I love, because it talks about living life as an adult, just like everybody else. And this picture here shows people with disabilities out in the community, doing things that everyone else does. You’ve got someone doing, work at a radio station. You’ve got someone with more of a significant disability reading to students in a preschool class. And they loved that. I’ve heard this story so many times and she would go to the preschool class and had to read, you know, through a computer, but she was actually reading to the students and all of the little preschool kids couldn’t wait for her to come so that they could help her turn the pages in her computer book. And I loved that.
[00:51:24] This is our friend Grant down here in the picture on the left. And Grant owns his own home, and he has cerebral palsy, but he is living his best life on his own. And I love, love, love that. The other lady in the middle there at the bottom, she makes, dog biscuits and sells them to people. And I love that story. So, and this is my friend, Danny again, down there in the right hand corner. And Danny is out with his typical friends at a bar, because guess what? Danny was 30 years old. And he wanted to be out with his peers, look at the smile on his face.
[00:51:59] So I just love sharing those pictures because I think that it lets you see that people with intellectual or developmental disabilities can live a happy, productive life, as long as we allow them to. And as long as we provide opportunities for them and not put them in that box. And so I think that is so, so good.
[00:52:22] But before we end Kellie, I want to see if there are any more questions. We have a few minutes before we wrap up, but just in case I don’t get back to this slide. This is our contact information. And when you do leave the webinar today, if you could please complete our evaluation for us. It helps us so much plan for future webinars. And it lets us know things that maybe we’re doing great or things that maybe you think we should improve on.
[00:52:48] So, Kellie, are there any more questions that we can answer?
[00:52:52] Kellie: There are a few. One person says my son did not have an actual special-ed teacher all last year. His education was handled by regular education teachers who had special education certification. They would come into his class and give him assignments, but it was vastly watered down version of what he had when his resource teacher was there. How do I offset this same scenario this year as a parent planning for his transition into adulthood?
[00:53:23] Stella: Okay. So let me make sure I understand it, are you saying that, I’m thinking you’re saying might not have liked that kind of content, is that what you’re getting Kellie? Is that what you think she’s saying?
[00:53:37] Kellie: Yeah, that’s what I think.
[00:53:39] Stella: Okay. I would just bring that up at an ARC meeting, and that you, you know, that’s really not the way that you wanted it to be now. To me, I look at that as an inclusive setting. I’ll look at that as, you know, the special-ed teacher coming in to the general ed classroom. And as long as that student is, you know, learning the same things that their typical peers are learning, and that the work is modified for them. I think that’s a great opportunity for them to be with her typical peers. But if you feel that they are, I think you used the word watering down the curriculum too much, then you need to make sure that they know that. And that needs to be documented in his IEP. And those goals might need to be looked at again and revisited. Maybe those goals need to be, have higher expectations on them.
[00:54:29] If there’s more to that, that you need you can certainly email us personally and we’ll answer it in more detail for you.
[00:54:38] Kellie: Yeah, she did respond and she says the special-ed teacher came into the resource room only.
[00:54:44] Stella: Okay. All right. So not in, so it sounds like to me they possibly weren’t going to an inclusive classroom setting or a collaborative, it sounds like more of a collaborative setting versus a resource room. And that would be something I would look at it as the service delivery, those service hours in the IEP. And see how many hours they’re saying that they’re saying they need to be in with special-ed, or it would say either resource or a collab setting, it should be very specific in the goals and also in those service delivery times. So I would look at that and we’d be more than happy to help with that too. That’s what our consultants do at Kentucky SPIN. We can even look at that IEP with you and provide some recommendations and some suggestions that might help.
[00:55:34] Kellie: Okay. So this person says, what made you realize you’re being over-protective and lead you to rethink your parenting approach?
[00:55:44] Stella: Oh, that’s a good one. I realized I was being over protective when he was coming to me for everything. And not even, not even having the concept of critical thinking and trying to figure out things for himself. Because I am an enabler, I’ll be the first one to sit here and tell you, truthfully, I am an enabler. I’m a fixer. And so I would always fix it. I would always take care of it. I would always make sure. And so what I was doing that was causing him to have that learned behavior of where he just depended on someone else all the time. And you’ll find it more as your child gets older that you’re doing that.
[00:56:27] If you have always done everything for your child, and this is even speaking for someone who doesn’t have a disability, if you have always done, if you’ve always done your child’s laundry, all their life, all right. When they move out and go to college, guess what, they’re not going to know how to do it themselves. So there are certain times that you have to go, okay, it’s time for me to not be that control freak over it. But to allow them to, they’re not going to do it the way you do it. It’s not going to be the same way you do it. It’s not going to look like the way you do it. So you have to allow those things to go. But just begin to look at it and say, okay, you know, are they coming to me for everything? And that was my aha moment. That’s when I realized I’m doing way too much and he’s got to be able to figure things out a little bit more on his own.
[00:57:13] Kellie: Okay. So the next thing is my granddaughter will be 18 in October and graduate with the general education diploma in May of 2021. So what can we do during COVID to help with independence?
[00:57:27] Stella: Oh, that’s great. That’s a great question because a lot of things are different right now. A lot of things. So I go with my own personal way that we have done things here. We, does she, first of all, I would want to ask and you don’t necessarily have to answer if you don’t, but these are, you don’t want to, but these are some questions I will begin to ask myself. What is she doing at home? What responsibilities does she have? Does she have any chores or things that she’s responsible for? How much are you doing for her? And I would begin to reevaluate that. I would begin to say, you know, I would begin to create that daily to-do list for her and let her begin to have some of those responsibilities on her own. And see how she’s doing.
[00:58:15] Because as we’re all home right now, it is, you know, we all have to make some adjustments. And so those are things that I would be asking. And then I would think of ways that I could incorporate those into her IEP that could be done right now since things are going to be virtual. How can that be done from a virtual standpoint, to put those goals and stuff in that IEP and that’s something we can also brainstorm with you about, personally. But I think we can maybe give you some good suggestions and ideas that might help.
[00:58:48] But as far as home goes, I would begin to reevaluate what’s going on in the house and begin to transfer some of those responsibilities to her. Don’t expect her to, you know, just get it right away. But, you know, begin to make her have some of those responsibilities at home and see how that goes.
[00:59:07] We’ve really had, we really had to do some adjusting, because Clayton wasn’t working. And so we had to bump up some responsibilities here at home while he was off of work for COVID. He has now went back to one of his jobs. And so that’s been very helpful.
[00:59:25] Anything else?
[00:59:27] Kellie: Yes, the person who had asked that question, commented where oscillating due to high risk, she has responsibilities at home and does well, but it’s the community piece that will be lacking.
[00:59:40] Stella: Yes. Okay. Here’s what I would suggest too. I would get her involved in some groups, some zoom chats with some friends. Even if it’s, you know, getting on zoom and doing that .Or create, you know, coming up with it, you know, maybe she could invite some of her friends to that. And you don’t even have to do zoom if, I mean zoom, because we’re so into zoom world right now.
[01:00:03] But, Facebook messenger has the capabilities of doing the group chats. You know, things like that’ll keep her socially connected with her peers. And maybe reaching out to, you know, some of her friends in her class and maybe, you know, like I said, just doing those chats really, really help. And setting them up regularly, you know, say, hey, every Tuesday night at eight o’clock, we’re all gonna meet on Facebook messenger and chat a little while, something like that. I think that would really help too.
[01:00:37] Kellie: Alright. We have a couple more if we can take time to answer them?
[01:00:42] Stella: Yeah. Let’s go ahead and take a couple of more. We don’t want to keep, it’s 12 o’clock but we don’t want to keep anybody longer than they want, but please feel free to stay on if you want. We’ll answer these next two and then, you all can leave anytime you want to, but thank you. And don’t forget to fill out our evaluation. Okay, go ahead, Kellie.
[01:01:00]Kellie: Okay. The next thing is how do I get a Kentucky SPIN person to work with my child with a disability?
[01:01:12] Stella: Okay. So all you have to do is, now I want to make sure I understand that, we don’t really, what we can do is we can help you with resources. We can help your child, you know, maybe get involved with their IEP, different things like that. We will be more than happy to do that. All you have to do is just reach out to us at this email address on your screen and we will be happy to help you any way that we can. We work one-on-one with families, that’s our specialty. So one of our consultants will reach out to you and be more than happy to help you with that.
[01:01:49] Kellie: Okay. The next thing is how do I find a supportive circle of friends for my special needs child?
[01:01:55] Stella: Oh, that’s a good question. And we, Kellie, have we had conversations about this? [ chuckles] We’ve had many, many conversations about what can we do to provide that support to folks, you know, young people who need that. We’ve talked about support groups. We’ve talked about all kinds of different things. And I wish that I had the magic answer to that, but unfortunately I don’t. We can send you some resources that we have that of a few groups that we know of. It’s not very many. We have talked about, you know, starting one for youth. We we’ve done a lot of different things. We’ve had a lot of conversations about it.
[01:02:42] But it’s just sometimes, maybe if your child has a diagnosed disability, this is what’s happened in my own personal world. So like I said, my son has Williams syndrome that we have a wonderful Williams syndrome community. And so there are a lot of young adults with Williams syndrome who’ve created their own little groups and they talk all the time. They have a weekly zoom call where all of them do get together and that has been created, an adult has created it and then made it available for other young adults with Williams syndrome to participate in.
[01:03:18] That might be something that would be beneficial for them if, or, you know, start one yourself and start inviting other kids, other family members or other folks that you know has a child with a disability. But also remember to put that other important spin on it and have folks without disabilities involved too, because that includes, you know, it brings on that whole inclusive setting. I think that’s real important in our world today that we try to incorporate our young adults with disabilities with typical peers also.
[01:03:55] Was that it?
[01:03:56] Kellie: We have one.
[01:03:59] Stella: Okay, last one.
[01:04:01] Kellie: And it is Donna from the YES program, is wondering how you think educating students and parents, even younger than high school, wait, okay. Donna from the YES program is wondering, how do you think educating students and parents even younger than high school is beneficial?
[01:04:22] Stella: I think it’s extremely beneficial because guess what transition means, remember what we said, moving from one place to another. Kids are transitioning from early start, preschool, kindergarten, all of that. I think it is very, very important that we begin educating families, teachers early early on. As young as kindergarten, you know, way before then, because guess what? That is so valuable that families know about transition way ahead of time. You certainly don’t want to wait until they’re 18 and go, oh my goodness. I definitely need to think about transition now. No, that should’ve been many, many, many years ago.
[01:05:03] We’ve been talking about transition in my son’s life since he was diagnosed with Williams syndrome because we always knew that his life was going to look different. So we wanted to be sure that we had a desirable, good life, future plan for him. So, no, it needs to start early, early on.
[01:05:20] And Donna Fox is a great person to reach out to. She has, Donna I’m so glad you’re on here. She has a great program called the YES program. And Donna, we need to get you on one of our webinars sometime soon where you can talk about that. It would be a great outreach for some adults with disabilities to stay connected to other adults with disabilities. So we definitely need to reach out to you about that for maybe one of our Tuesday Tips after we get done with all our COVID stuff, hopefully.
[01:05:48] So, okay. Thank you all so much for being with us today. We have enjoyed every single minute of it. I hope you have too. Again, you will be getting an email later this afternoon with all of these handouts, if you didn’t get a chance to download them. And we would appreciate you completing our evaluation and have a wonderful day.
[01:06:07] Thank you.