19-01-2024
Maximizing Independence for Students with Autism: A conversation with Julie Swanson, The Life Skills Lady
A TRANSCRIPT of this episode will be added to the show notes on the podcast website: https://SpecialEd.fm shortly after publication. Life skills are the biggest predictor of adult success for individuals with Autism. Yet, many parents and school teams misunderstand the full breadth of life skills, and they often take a back seat in special education planning. We discuss the 3 domains and 10 categories of life skills and their importance to increasing quality of life, how to incorporate life skills into the IEP early, and how to navigate transition and the IDEA (Individuals with Disabilities Education Act). My guest for this episode is Julie Swanson, a.k.a. The Life Skills Lady. She is the parent of an adult with an autism spectrum disorder and a non-attorney special education advocate. Her career as an advocate grew out of her own advocacy efforts for her son. Julie is the founder of lifeskillslady.com, a website devoted to increasing quality of life and independence for students on the autism spectrum. You can follow her @lifeskillslady on all social media platforms. Julie is also the co-author of Your Special Education Rights: What Your School District Isn’t Telling You. You can find the Life Skills Cheat Sheet Julie discusses here: https://lifeskillslady.com/resources/life-skills-cheat-sheet/ You can find the IEP Discussion Guide for Life Skills here: https://lifeskillslady.com/resources/iep-discussion-guide-for-life-skills/ You can reach out to Julie here: https://lifeskillslady.com/contact If you liked this episode, share it with a friend and on social and leave a review here: https://podcastsconnect.apple.com/my-podcasts/show/special-ed-on-special-ed/aaf5305a-7592-403f-950a-7a60dc4914be/ratings-and-reviews FLASHBACK Go back and listent to the episode, Should they stay or should they go?, where I discuss transition skills with transition specialist, Muncie Kardos, Ph.D., OTR/L, ATP: https://specialed.fm/?p=1187 A TRANSCRIPT of this episode will be added to the show notes on the podcast website: https://SpecialEd.fm shortly after publication. TRANSCRIPT (not proofread) SUMMARY KEYWORDS skills, child, parents, advocate, alex, disabilities, school district, teach, attorney, kids, autism, iep, school, functional, find, adult, academics, special ed, dana, assessment SPEAKERSJulie Swanson (The Life Skills Lady), Dana Jonson Dana Jonson 00:09 Hello and welcome to Special Ed on special ed. I am your host, Dana Jonson. And I have a wonderful guest for us today. Miss Julie Swanson, who is the life skills lady and she is going to talk to us about her passion project for Life Skills lady. Julie Swanson (The Life Skills Lady) 00:26 The Life Skills lady is all about increasing quality of life and outcomes in autism and other developmental disabilities through life skills beautiful. Dana Jonson 00:37 And that's what we're going to talk about today. But I can't do anything without my disclaimer. So let's hear that first. Information and this podcast is provided for general informational and entertainment purposes only and may not reflect the current law in your jurisdiction at the time you're listening. Nothing in this episode creates an attorney client relationship. Nor is it legal advice. Do not act or refrain from acting on the basis of any information included in or accessible through this episode without seeking appropriate legal or other professional advice on particular facts and circumstances at issue from a lawyer or service provider licensed in your state country or other appropriate licensing jurisdiction. Thank you for being here. Julie. I'm so excited. You're here. Let me tell my audience a little bit about you. Julie Swanson is a parent of an adult with autism spectrum disorder and a non attorney special education advocate. The career as an advocate grew out of her own advocacy efforts for her son, which we're going to talk about a little bit. And she's the founder of life skills. lady.com, which is a website devoted to increasing the quality of life and independence for students on the autism spectrum. You can follow her at Life Skills lady on all social media platforms. And she's also the co author of the very popular book, your special education rights, what your school district isn't telling you, which you can find on Amazon, which is a great reference for parents. And all of this information will be in my show notes. So if you're driving and you can't write anything down, then just go back and read it a little bit later. So Julie, thank you for being here. I would love to start with how this all came to be for you. You're a mother of a child with disabilities. So what was your path that brought you from that to advocacy to the lifeskills? Lady? Julie Swanson (The Life Skills Lady) 02:14 Right. Thank you for having me. You know, my son, Alex, who is an adult, was diagnosed with autism in 1997. Just almost three at that time. Dana Jonson 02:27 That's really early for that time, isn't it? Yes. So Julie Swanson (The Life Skills Lady) 02:30 that was right when I didn't even I barely knew what the word autism was, I had to look it up in a never forget it a set of red encyclopedias down at my laptop, which were from the 1950s. And let's just say I went home and cried for four days. And I had a very dark period, because you do not want to read about autism from a set of 1950s. People don't even know what encyclopedias are if people Dana Jonson 02:57 can't even imagine that being the primary resource anymore. But yeah, that sounds scary, right. Julie Swanson (The Life Skills Lady) 03:03 And so autism was just on the rise at that point. But when he was diagnosed, I felt like I was the only person on earth who had had a child with autism. But as time went on, he went through the purpose of three system and then went into the school system. And I had developed a home program for him before going into the school system out of my basement using the principles of applied behavior analysis. And there were no board certified behavior analysts BCBAs in the state of Connecticut, where I live. So we had to get a BCBAs from Rutgers, which was a big epicenter of applied behavior analysis and such. So I had asked going into the school system, you know, he requires a program and we had evaluations and recommendations from professionals who said, Yes, he requires a program using the principles of applied behavior analysis. And of course, the answer was no school system didn't even know what ABA was or what Dana Jonson 03:59 it be back then they were still considering it a methodology. Right. Right. It wasn't considered scientifically proven. No. Julie Swanson (The Life Skills Lady) 04:05 In fairness, nobody was tooled up back then at the school systems were not tooled up. So why was the second due process case in the state of Connecticut, asking for program using the principles of ABA? Wow, it is a podcast in and of itself to go but was my hearing. But we ultimately prevailed. And the word got out that this woman named Julie Swanson was successful getting an ABA program in her school system. And by now you know, time is going on and the the the incidence of the disorder is on the rise and people started calling me and of course you go through a hearing all the way through you have gone through a boot camp and understanding the IDE a the Individuals with Disabilities Education. So I without knowing it had come to learn the skill set. I really know Ever wanted to have? Yeah, Dana Jonson 05:01 it's true. Because it's not just about knowing the disability. I mean, you are going through, like you said, a boot camp of special education law. And let is important and what isn't important, and not everything that's unfair is illegal, right? So that's right. We're learning everything from scratch. Julie Swanson (The Life Skills Lady) 05:18 I was fortunate enough at the time to be able to stay home with my two kids. But I as time went on, like, Okay, I need to go back to work now. And in my previous lifetime, I had sort of two tracks that I was on. I was intelligent production, and I was in public relations. And I was ready to go back to work. But by this time, so many people are calling me and asking for advice that I was giving out freely and taking a lot of time and energy from me, I thought, I think I have a business. I think this is a need. And you know who the players were at this that time there were only three advocates in the state. Dana Jonson 05:58 Not Alone people. Right. Julie Swanson (The Life Skills Lady) 06:00 We know who they are. Well, Dana Jonson 06:01 and to point out your attorney for your due process hearing was your co author, correct? Absolutely. Julie Swanson (The Life Skills Lady) 06:07 I met attorney Jennifer Laviano because her father represented me. Yes. So yeah. So that's that's how I met Tony Laviano. So anyway, that's how I fell into this. And I've been doing it ever since 20 plus years. Johnson. Dana Jonson 06:25 Wow. That's amazing. That's amazing. Because I think I met you about 20 years ago. I Julie Swanson (The Life Skills Lady) 06:31 Oh, probably. Yeah. Yeah. Dana Jonson 06:35 That's insane. As Alex grew up and went through the different phases, I mean, just because you want your due process hearing and got a placement. Yeah, that wasn't the end of it. Right. It wasn't like no veiling from then on. And eventually he became an adult and no longer under the purview of a school district. Right. So and I remember that transition for you as well, it was very difficult. So yes, let's talk about life skills. Lady, when did that happen to be Julie Swanson (The Life Skills Lady) 07:04 a thank you. And you know, it's, it's an answer that I hope will help people, right. And the whole reason that I started the life skills lady, which by the way, I did over the pandemic, it had been brewing in me for years. But when do we have time doing what we do, I know, I'm not an attorney. But we essentially do a lot of the same thing, a lot of the same stuff, to secure appropriate programming for kids with disabilities in school systems. And obviously, different levels of us will ever be without a job. That's right. I, I'd love to be out of a job. But it would be wonderful, I would be wonderful. So in over the years of doing this, and I work with kids with all disabilities, but I do do a lot of autism, because that just happens to be one of the things that I'm known for, but I do all disabilities. And in working with kids who have autism and other significant developmental disabilities, I have seen this, it's more than a trend. It's a practice, I suppose, for the lack of a better word, where people start thinking about transition and adulthood in what I call the 11th hour now, and it really is too late. Strands transition to adulthood, begins when your child enters the school system. If that's a preschool, it's in preschool, I think that's in the third grade, because many people have different paths, right? So kids come from private schools or whatever, it starts immediately. Because it takes a long time to build up these 10 areas of life skills, and most people think of life skills. In my opinion, I don't think there's ever been a study, but in my own organic research that I've done, people think of life skills as skills you have in the kitchen, and skills you have taken care of yourself with hygiene and dressing and all that stuff, end of story. That is one area of the 10 areas of life skills. And so from the beginning, there's a misunderstanding of what life skills are. And so I just thought that, combined with the very poor statistical outcomes we have for our kids who have neuro diversities, and autism spectrum disorders, and by the way, they're worse than any other of the disabilities. Great. We've got to change this. And we can change it now we're, we still need so much research. Because think about it, all these kids are just becoming adults in the last five or so years, 10 or so years. And so we're in catch up mode to do the research of what it takes to improve these outcomes. But everybody can agree that By increasing life skills, you increase the likelihood of increasing outcomes and quality of life Dana Jonson 10:10 well, and that's we want them to be as independent as adults as possible. And if we wait until they're adults to work on those skills, right, nothing's gonna happen. I heard Peter Gerhart speak once, and he's the best he is. And I and what he said, I've really changed my view. And I got it because I'd worked in a very severe escalation. And he said, When adult men go into a public bathroom, yeah, the environment there is vastly different than an adult woman going into the bathroom, right? We talk to people, we chat out of the blue, you'll comment on someone's shirt or their lipstick with no prompting, right? Because training these young boys to use a public bathroom, women, primarily the teachers are women. And I've recalled having that happen with one of my students, I had to take them to the airport, and we're at a public bathroom, and I couldn't go in. And they were in there with their communication book going up to people and pointing and talking to them. And I remember thinking, Oh, my gosh, this is not okay. Like, thank God, there were there was somebody there who was very kind, and he's like, I'll watch the door you can go in and now that sort of thing, but, but I realized, like, Oh, this isn't appropriate, this is something we have to work on. That kid was 18. So we were going to start then. And so to your point of starting very early, it's things like that, that we're not even contemplating, right, until a later age. Julie Swanson (The Life Skills Lady) 11:37 And then there are barriers within the system of why parents are told that we don't have to teach life skills. I mean, there are a myriad of reasons why you may get pushback as a parent incorporating life skills into VIP early. And let's face it, look, you're in school, primarily. It shouldn't, you know, it's not just primarily, but we're there to learn the curriculum, right? Or if you're in special education, to, to be as close to that curriculum or something. Right, you know, appropriately designed in sync with it. And so there, there's just this thinking of, we're not there for life skills. Right. So I did I answer your question? Well, yes. Dana Jonson 12:19 But I think to your point, aren't we though, because if a child wants to have disabilities, right, right, you're expecting them to learn the skills to interact with adults, you're expecting them to learn the skills to be able to handle a job interview, that's why they have a guidance counselor or their interview for college. So we are providing those life skills to children without disabilities, right. And so to say that a child with disabilities doesn't get that same kind of training, maybe they're not going to college, but they need to know how to interact in a work environment, or in a school environment or further training or whatever environment that is, and also for living purposes, the more independent a child is, the better their living situation will be post high school and post public school. Right? Yeah. Julie Swanson (The Life Skills Lady) 13:10 And you know, in the IDE, A is you know, itself, it says the transition from a federal timeline is by 16, right. And in our state is 14, and every state is different, because you could move that up. But it also says if earlier earlier if the team deems that right, if necessary. And so what I like to try to do is to say to teams know, we need to start it early, earlier. There are things in the system that also probably inadvertently create barriers to parents incorporating the skills earlier. Dana Jonson 13:46 So what are those barriers? What are you looking out for? Julie Swanson (The Life Skills Lady) 13:50 Right? So one of them the law? Right, right. And right, but the obviously the law is designed to work for us and protect us. But many parents don't even know what it is. Right? So here's the scenario that typically happens. Even when I'm involved, right? You say, well, we'd like, let's, let's say it's, we'd like to teach Susie, how to cook macaroni and cheese. And what the team will say is, but she doesn't need that skill to access the general education curriculum. And why do teens say that? Because the definition of an IEP states and oh, by the way, I'm going to read it. Oh, good. For those who can't Dana Jonson 14:33 see this. I will tell you that Julie is reading from printouts that are on the life skills lady.com So she has some wonderful printouts so go check those out. Julie Swanson (The Life Skills Lady) 14:42 Right? Yes, free. Thank you, Dana. So I am I was so bothered by the answers that are given when asking do incorporate life skills into the IEP earlier. I did this print out so that parents can bring some Think to the team with them and say, Hey, I've got this, this guide here, can I go through with the team, the definition of an IEP, according to the IDA, and this is an abridged version says, is a statement of the child's present levels of academic achievement, and functional performance. There's the big one for life skills, including, and this is what everybody quotes, how the child's disability affects the child's involvement and progress in the general education curriculum. However, Dana, as you know, the statute goes on to say that it is also designed that an IEP is designed to meet each of the child's other educational needs, that result from the child's disability. And it goes on to say, to make progress, in addition to making progress in the general education curriculum, and to participate in extra curricular and non academic activities. Okay, and to be educated and participate with other children with disabilities and non disabled children in the activities. So my point there is and why I put this guide together, is it gives parents something to go in to their team with to say, This is what the actual law says, No, it doesn't have to be just that it's to make involvement and effective child's involvement in progress in the general ed curriculum. Right. Does that make sense? Yeah, Dana Jonson 16:36 there's more to it. And I find that in many of these meetings, there's a lot of language that's left out, for example, I, you know, just popped into my head, least restrictive
