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/
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, assessmentSPEAKERS
Julie 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 environment, we always forget the part that says that is appropriate. Right. It’s not just automatically the least restrictive. It’s the one that’s appropriate. And And yes, that we are looking to involve children in the general ed curriculum. But there’s more to it. That isn’t the only goal of the statute.
Julie Swanson (The Life Skills Lady) 17:03
Right. And so the other barrier to that to finish answering your question is, in order to show that your child has deficits in their functional performance, which we will get into after this, you have to assess their functional performance. Right. So there are assessments such as the Vineland, this assesses the 10 areas of adaptive skills. There’s the a bass, which is the adaptive behavior assessment scales, there’s the Abels, the assessment of basic language and learning skills, the A falls, the assessment of functional living skills for some of our kids on the spectrum, there’s the VB map, which the verbal behavior, milestones assessment, I know, there’s other words that go with that. I always forget what the map itself stands for, but, but
Dana Jonson 17:55
it isn’t gonna cut
Julie Swanson (The Life Skills Lady) 17:56
it. Right. So when you have your triennial testing, with a lot of our kids with developmental disabilities, they’ll miss assessing their adaptive skills. So now, if you assess the adaptive skills, which by the way, on my website, I have a whole area of listing all of the assessments, you can ask for your now once you’ve assessed them, now you have the data, and the list of deficits. And while it’s so important to talk about what our kids can do, let’s remember that we have IEP s to teach them the skills that they don’t have. Right, so here are the things that my child can’t do according to the assessment. And so I’m asking for their special education programming to include where their adaptive skills adversely impact their education. So there’s all these different things that come together, to present to your team to say, we need to include this in my child’s IEP. And
Dana Jonson 19:00
we can start early, right? That doesn’t have to be right, they can reach the young child, they can say we want to start assessing the adaptive skills now. But what age Needs Assessment start?
Julie Swanson (The Life Skills Lady) 19:10
That’s right, right away, and what people have to what parents need to remember. And of course, people who work in school districts is that an IEP is to address academic achievement, and functional skills and functional skills are generally known to be those skills, we need to meet the demands of everyday life. The IDE doesn’t even define functional skills, because they can be so widely interpreted.
Dana Jonson 19:38
Well, and I always like to point out is that in the IDE, it does state education is not just academics. So when you’re hearing we only how are we tying this to academics? How is this academics has nothing to do with math. Education is not just academics,
Julie Swanson (The Life Skills Lady) 19:56
right? You know, I remember one of the stories that I’d like to Tell because it was so mind blowing to me. And it was actually, one of the catalysts for me to want to start the life skills lady is I was working with a family whose child was higher on the spectrum had lower support needs, but was still not functioning well. So that’s why I don’t like to use the term high functioning autism. Because academics do not predict how well we do in adulthood.
Dana Jonson 20:24
I feel like high functioning and usually means they’re not doing anything to bother me.
Julie Swanson (The Life Skills Lady) 20:30
It’s so good. Dana, that is so good. I love that. I might have to start using that. Yeah, it’s that’s how i. So there was this one young man in high school. And I asked the team to assess his life skills, his adaptive skills for transition programming. And the school psychologist, and I am not exaggerating, became completely undone. And basically said to me, You are insulting this young man’s intelligence, how dare you ask to have his life skills valuated. You are, this is this is below his dignity. Now meanwhile, the mother, who is my you know who I am her client, and she is my client wanted to assess the life skills, they absolutely refused. Of course, eventually, attorney, an attorney did have to get involved. The school, it’s a long story, but let’s just say that he never really got exactly what he needed. Yeah. And she called me after his mom. And and has said to me, he’s not doing well, in adulthood. I mean, he, he’s doing well. But there are so many areas that he’s he just never got the instruction that he needed. Yeah.
Dana Jonson 21:57
Well, and I think that that is something that parents will hear when they don’t have an advocate, or they don’t have an attorney with them. And somebody who’s coaching them or explaining this to them, and they hear this is that they’re so smart. That’s an easy thing to grasp onto. And what how do you define smart, you know, if you don’t have the social skills to navigate a room, but you can do theoretical math? Where’s that getting you?
Julie Swanson (The Life Skills Lady) 22:24
Right? And it’s great to be smart. But it’s not the only thing that can carry us into being as successful as you can possibly be given? Your, your set of circumstances. academic art, everything that is very correct.
Dana Jonson 22:41
Absolutely. When parents are in these situations, like you just said, a lawyer had to get involved. When, from your perspective, as a parent and an advocate, what are the red flags where parents should be saying, you know, what, maybe I need a professional like, maybe I need to go beyond my advocate. Because, you know, sometimes advocates are great, but they may not be, well,
Julie Swanson (The Life Skills Lady) 23:00
we can’t practice law. Right? Exactly. Right. So it’s when you’re in a dispute with your school district that can’t be resolved through the IEP process, right. And that’s what I always tell parents, I, I’m, you know, I’m not a miracle worker, I’m, I’m, I will try my very best to resolve this issue. But at the end of the day, we may not resolve it. And you may be in a dispute. And you you know, so you either have the mediation process you can go through or a hearing. And I will often get involved with mediations for parents who may not be able to afford an attorney. And but of course, I can’t advise them on what the agreement says. But yeah, that’s when I say then then I will set you up for need, you know, the next step. Yeah. And,
Dana Jonson 23:48
I mean, that’s that mean, that’s totally accurate. You know, it does make me crazy, I think. And I also like to tell parents, that there’s not an attorney out there worth their salt, who isn’t going to speak to you, right? And tell you, you don’t need me yet. Or you do need me now, I at least find in our state, you know, there aren’t even enough of us to do this. So it’s not a competitive issue. It’s about do you need me or not? And maybe I’m not even the right attorney, maybe this person does more of that stuff. And they might be better equipped to help you with that. Do you have because people always ask this, and I actually just had someone asked me this the other day, should my child be in the public school or not? Should I be fighting for a private program? Or should I be fighting for them to be in the public school? And in this particular matter? I said, we don’t know yet. We don’t have an evaluation. We need more information. But I’m curious what you know, how do you answer that question? When parents come to you,
Julie Swanson (The Life Skills Lady) 24:45
that’s a really tough one because, uh, you know, from being a parent, that I’m not going to be able to live in your home and understand your child like you do, right. And so at the end of the day for me how to answer that question is, What benefit are they getting from being with the typically developing peers? Now, trust me when I tell you my own son was not in a public school, my Alex has not only autism, but he has an intellectual disability and he’s nonverbal. Okay. So for me, as my mother used to say, some decisions make themselves, it was pretty obvious that for Alex, his least restrictive environment, was a center based program, not in the public school. For many kids who are higher on the spectrum, right? They may benefit greatly from being with those typically developing peers. And when are you with the typically developing peers? And when are we pulling you out into more of a resource setting? And so that balance may be perfect for your child. But I think when the balance tips, right, and your child is perhaps so far behind, and perhaps so disconnected to the the regular education population, that maybe the benefits outweigh the risks, or the vice versa, the risks outweigh the benefits, right? Then it may be time to say, My child needs more of a senator based out of district placement. But I never liked to be the person who makes that decision for a parent, I really believe as a parent, you’ve got to have some sort of gut feeling about that. Do you agree, Dana,
Dana Jonson 26:33
I do. Actually, I usually say to parents, if something in your gut says something’s wrong, there’s probably something wrong, right? Go with your gut. And that doesn’t mean you know what’s wrong. Or sometimes your eye might be on the wrong ball. But if in your gut, something is wrong, something is wrong, and trust your gut. And I think that parents get from a very, very early in the process are being told not to trust their gut, they’re being told to trust other people. And that can be very difficult because you know, you’re not an expert, you’re not an autism expert, you’re not a certified teacher, you’re not no tea, whatever it is, that you’re feeling like, well, these are the experts. Yes, they are. But there’s only one person who spends all their time with your child. Right. And that’s, so something’s wrong, something’s wrong. And yeah, I also mean, I have five children, all the APS with drastically different needs, we’ve gone the whole spectrum. You know, we’ve been in separate Special Ed schools, and we have been in fully without, you know, barely any services in public school, so and everything in between. So there is no one size fits all. And I totally agree with that. And I think it really, as you said, I can’t make that decision for a parent, I can tell them. This is what a school district can do. This is what your school district can do. This is what this program can do. But it’s not up to me whether they belong in one place or the other, I can assess how easy or difficult it will be to get one program or another. Yeah,
Julie Swanson (The Life Skills Lady) 28:03
I do love it when you know, and obviously, that’s one of the reasons to get a an independent evaluation. And I do love it when independent evaluators say, hey, school district, here are the components of programming you need to put in place for this child. If you can’t do that, yes, then we need to think about the out of district, right, and give the school district the opportunity to build the program, the child requires to have an appropriate program at the school district. And if that can’t happen, that’s also another way to say, All right, well, now it’s time. Right? So do you want to know what the 10 areas of life skills are for your listeners? I
Dana Jonson 28:47
do, but very much. Okay. I was hoping we’d get there.
Julie Swanson (The Life Skills Lady) 28:53
And by the way, I’m holding up my cheat sheet.
Dana Jonson 28:59
That’s on your website to write Oh,
Julie Swanson (The Life Skills Lady) 29:00
certainly is. And so all you have to do to get these free things is give me your email because you’ll get my newsletters, you know, which is very
Dana Jonson 29:09
helpful and very informative. Yeah. Without a doubt like getting spammed. No,
Julie Swanson (The Life Skills Lady) 29:14
no, I don’t believe me, trust me when I tell you, I will not inundate you with email. I wish I had more time then. Okay, so the life skills cheat sheet for IE planning. IEP planning is what I’m reading from, okay. And I’ve made it visual. I’ve made it as a graphic because, listen for me, I want people to bring stuff down to the fifth grade level for me. Yes, I love visual, me as a user make this as simple as possible for me, please. So that’s what I’ve tried to do. And I have three circles. And each circle has the there are three domains of life skills. One is conceptual skills, social skills, and practical skills. And then under those three domains are subcategories, which there are a total of 10. So I’m going to start with the conceptual skills. And the first conceptual skill is communication. Oh, by the way, conceptual skills are really what can be the most challenging for many of our kids with autism, developmental disabilities, and other neurodiversity is because it includes applying insights into situations, right. It’s judgment, it’s higher level thinking, right? This can be very difficult for many of our kids. So the first one is communication. And that’s understanding, you know, using verbal and nonverbal language, then there’s functional academics that’s using reading, writing and math skills in everyday life. This is not calculus, functional academics are those the math we use in everyday life tipping percentages, you know, all of those things. And even just writing an email or leaving your your parents a note on the kitchen table. Yeah, functional academics, then we have self direction, this is one of my favorites, because it’s one of the most difficult and we hardly hardly include these skills in IEPs. self direction is problem solving, exercising choice, initiating and planning activities, skills needed for independence, responsibility, and self control, including starting and completing tasks, keeping a schedule, following time limits, following directions and making choices. Yeah. Hello, executive functioning.
Dana Jonson 31:33
And not only that executive functioning, but I think a good basis on that is if you would not leave your child alone for the day. Right? They probably don’t have the skills.
Julie Swanson (The Life Skills Lady) 31:43
Right. Right. That’s one of my favorites, right. And it’s for someone like my son, Alex, that’s very difficult. And he can’t do a lot of these, but we’ve taught him to the highest degree possible for his circumstances,
Dana Jonson 31:59
to do some of these things, right? Well, that’s what I also love. And I wanted to mention that with that, a lot of times the bar is low. Well, there, this is a good example. They’ll never independently shave themselves. So why bother? And I know, I’ve seen the video of you with Alex shaving, and he does participate in that activity. He can’t shave himself independently, but you have taught him some of the steps and the ones that he can do, and he does participate. And that is huge. That is important. That is him being part of the process. And I think that you don’t just stop the whole activity because the child every single step independently, right, but what they do, absolutely, and for some kids, it might even be just tolerating it. Yeah. Learning to tolerate it. Okay, so
Julie Swanson (The Life Skills Lady) 32:45
now we’re on to the next domain, which is social skills. And there are two subcategories, the first being social skills, and of course, maintaining interpersonal relationships, understanding emotions and social cues, fairness, honesty, using manners, and obeying rules and laws. Well, you know, so many of our kids are at risk for victimization. Do we? Do we teach that? You know, I spoke out in Utah, recently at an ABA conference. And it was all on sexuality and autism. And the very first thing that they were saying is, how do we teach to keep kids safe, from you know, people who may be nefarious, and that is to start teaching choice making at a very young age. So that when somebody for the very first time says, you know, let me do this to you, right. They’ve practicing know. Yeah, right. Yes. But we don’t typically think of these things. Right. And obeying rules and laws. I mean, you know, you how many of our kids Dana, you know, you have them on your caseload with disabilities who have been arrested? Yeah. Right. Yeah. Right. So we have to teach them. This is the law, my friend, you will get arrested if you do this. Yeah. Right.
Dana Jonson 34:06
And I find a lot of that, what impairs that somewhat? Is that concrete thinking? And if something doesn’t seem consistent, right, they don’t understand. And it’s a lot of teaching that some things you will never understand. And you have to understand. But then there’s this other part where we want to teach them choice. And I had this issue with one of my own children, which was how to teach them the difference between what is mandatory and what is not. And when they do have a choice, because that was very confusing to them. They didn’t have a sense. Who was the authority in the room?
Julie Swanson (The Life Skills Lady) 34:40
Right? Well, that requires a lot of judgment, right? A lot of higher level thinking. Yeah. Okay, so the next one, and this is also one of my favorites, leisure skills, and that’s taking responsibility for one’s own activities and having the ability to participate in the in the community. Now what I’m doing right now is I’m using my hands still look like I’m on the computer and on a Gameboy or whatever they call them today. It’s not a Gameboy. That’s how old it’s the switch. Okay. But so many of our kids have a not just kids with disabilities have, I would say, an overload for technology. Yes, I would concur. I concur. Right? Right. So you know, it’s really important to teach, whether it’s bowling, swimming, walking, puzzles, I don’t care but having a nice, as robust as possible menu of leisure activities for our kids to be able to participate in. Yeah, and last area is practical life skills. And there are five of these self care is the one that we all think about when we think of life skills, right? skills needed for personal care, including eating, dressing, bathing, toileting, grooming, etc. Now, here’s another thing. How many times do many of our kids with autism or diversities, developmental disabilities have challenges as when it comes to eating and the variety of foods we eat? And oh, no, we can’t teach that at the public school system. But we can, because it is a functional life skill. And you have to assess it to be able to prove to your school system, this is an area of need, you know, home or school living, these are the skills we need to take on basic care of our living space, laundry, housekeeping, food prep, you know, property, maintenance, etc.
Dana Jonson 36:33
One response I hear to that a lot is well, there are a lot of kids this age who don’t do it. That isn’t the point.
Julie Swanson (The Life Skills Lady) 36:39
Yes, you are going to hear that. And that is where you say, you know, I like to say, look, we’ve got the Vineland here, we’ve got the a bass here, we’ve got all of these assessments that include this. It is part of it is part of functional performance. And but my child has a disability and an IEP and God bless that other child. But we’re not talking about that other child. Yeah. So then we have community use. And that’s the ability to be involved in the community going shopping, using transportation, community services, health and safety. Again, one of my favorites. And this is the ability to protect oneself, medication management, responding to health problems, you know, and in today’s world, keeping ourselves safe includes keeping ourselves safe on the internet. Yes, you’re right. I’ve had situations with clients of mine, who have met up with people they’ve met online, and it hasn’t ended well. Now, you know, these are all things that we need to explicitly teach today. And the last one is work. And that’s not only the ability to get a job, but keep a job. Yes. And for many of our kids like my son, Alex, he will never be competitively employed. And he is a 24/7. Kid, he as an adult, in Connecticut, it’s called the Department of Developmental Services, and he has a budget to help support him because he has a level of need that that drove that decision to be made. But even though he doesn’t work, and I’m doing air quotes, right now, he goes to a farm every day, and with his support person, and changes the water for the horses. And so he gets up, and he’s able to do something meaningful every day of his life. And his day is his dance card is full every day. And it’s with things that we know he loves, and that are meaningful. It’s not work. But it’s a different kind of work. Well, I
Dana Jonson 38:45
like to think of, it’s important for them to be contributing members of society. And that is not dictated by a paycheck, right? If you’re capable of being competitively employed, or even with a job coach of some kind, great, but if you’re not contributing to the community, or Well, I guess the community, you might be a contributing member of society, right. And to the greatest extent that we can have children be contributing members of society, it is better for them as well. Not just for us as a society, but everybody benefits from that. And
Julie Swanson (The Life Skills Lady) 39:19
it’s a sliding scale as based on your child’s individual needs. What all of this looks like in adulthood, right? Yeah. So yeah, so I just wanted to sneak in the 10.
Dana Jonson 39:30
to No, I love that. That’s very important. And I think parents need to, to understand all of those areas. And that, as we said at the beginning, a lot of those areas need to be started early on, like you said, the concept of choice making the ability to say yes and no to things. It doesn’t mean that you give free range, but Right, they need to have some concept of control. Right? Absolutely. In order to understand that. And for children who have I haven’t. And I’ve seen that happen as later teenagers for children whose lives have completely been controlled. That’s where they don’t have a sense of their own voice. They don’t know that they can say no.
Julie Swanson (The Life Skills Lady) 40:12
And I think as school teams and as parents, we inadvertently, and I am guilty as well inadvertently support our kids. And we don’t really know until school is over just how much support they had. Right? And you know, listen, I’m a mother, you’re a mother, we all do it. But we just we don’t realize that we’re doing it. And I have to remind myself every day, because Alex lives at home. And you know, he does have support folks who come in, but and bring them out to the community every day. But I have to remind myself every day, you know, I’ll give you an example of problem solving. Alex is not the kind of guy we’re going to say, here’s this math problem, or here’s this problem, we’d like you to solve and tell us how you would solve it. But what we did teach him to do, right, is we realized, I realized that he had become a little prompt dependent, okay. And I wanted him to be less prompt dependent. So I worked with somebody where we taught him problem solving. So as an example, we stopped saying things like, Alex, put it over there, right? Put the fork there. And we would change that to where does that need to go? Okay, don’t those are very different ways of, and then giving him the time. Now we would have to teach, right? If he didn’t, he didn’t know what to do, we would then give them time and say, it goes here, buddy, great job. And he’s learning that and then you just keep doing that and shaping it and continuing to step back. So we taught him problem solving, by giving him enough time to figure it out on his own. And when he couldn’t we help him? Yeah, but there’s an example of, you know, Alex is lower on the spectrum, if you will, right. And that’s his need is greater, but we still taught him how to problem solve.
Dana Jonson 42:17
But I think that teaching how to problem solve at any level on the spectrum, because, as you said, as parents, we do that a lot. And you know, as as an example, I realized that this was actually kind of funny. I thought it was funny, okay. My kids figured out that if they told if they acted like they didn’t know how to load the dishwasher, they could eventually get my husband to come over and show them how to do it.
Julie Swanson (The Life Skills Lady) 42:42
Doing air quotes, yeah, doing aircraft.
Dana Jonson 42:46
Dishwasher, and so setting it up and putting it in properly and saying, Okay, that’s how I started to realize this was happening more and more. And in his mind, he’s like, but I’m showing them how to do it, and not realizing that they have become dependent on him just doing it. Yeah, I’m saying so they weren’t learning. They weren’t even paying attention. And this has nothing to do with neurodiversity. It’s pretty, I think we as parents often do too much for our children thinking that we are teaching or helping. And the reality is, the more we back off, often, the better. Absolutely. You know, so especially when you’re talking about a child like Alex, who needs to learn that that is an option, figuring it out is an option. Absolutely. And you know, that’s how we all learn, right? Yeah. Hopefully,
Julie Swanson (The Life Skills Lady) 43:35
I literally, if you have a listener, who wants to start incorporating life skills into the IEP early, I literally did a step by step on my website. Under the tab getting started. As the first step, you can take the second step. And no, is this stuff easy? Is it a pain in the neck? Is there any luxury in it?
43:58
No.
Julie Swanson (The Life Skills Lady) 44:03
It’s the investment you make in your child. Yeah. And the last thing I want is for people to be in the little the 11th hour in Dana, I’m sure you’ve gotten these calls. You know, my son is a senior, and he’s about to graduate in a couple of months. I just learned that he might be able to stay on past his senior year.
Dana Jonson 44:26
Oh, my God. Yeah, that makes my head want to explode. Yeah.
Julie Swanson (The Life Skills Lady) 44:29
But I’m sure you’ve gotten those calls. Oh, not only
Dana Jonson 44:32
have I gotten those calls. And this is partially on me. I had a client who said, Well, I don’t think I need you anymore. Because, you know, after the senior year, they really can’t do much can they? And I’m like, where did I fail? You know, wait stops Yes, you can still fight your school district and get what you need. And you know, I put that one on me. But I got services, don’t worry. I think there is trepidation to quote them. fighting your school. And I’m not asking people to fight their school, I’m asking them to advocate for their child. Right? And if unfortunately, that turns into a fight. Yeah. Not something that we can help here and try and be collaborative. Right?
Julie Swanson (The Life Skills Lady) 45:16
Right. And I always think of guilt, because I’m sure you have listeners who aren’t parents and they work in school this Yes. Right. And we don’t want to be fighting with them. They don’t fighting with us. No, but we’re you have to advocate for your child. And you know, like my mother used to say, there’s no one waiting in line behind you to do this job. Exactly.
Dana Jonson 45:37
And I say that to parents all the time, you know, you can’t wait for somebody else to step up and do this. It has to be you, you are the parent. And it is overwhelming because as a parent of children with disabilities or a child with disability, you are overwhelmed. You are overbooked overschedule, out priced everything and, and it is overwhelming to then think you have to go do this. And but there isn’t anyone else who’s going to do it for you. And some people are very lucky, very fortunate. And they end up in a situation and it can be the same school district, I will have one family with a situation where everything goes smoothly. And I’ll have another family the exact same situation and nothing goes smoothly. And I can’t tell you why yet, right? It just it does happen both on both ends of the spectrum. But as the parent, you have to know, you have to know what your child is entitled to and you have to know what your child needs. And if you don’t, you have to know where to find that information. Right. And the life skills lady is a great place to start. Oh,
Julie Swanson (The Life Skills Lady) 46:38
aren’t you nice? Oh, no, you know, and I always say to parents to you know, if this is overwhelming for you, work with a local advocate, work with an attorney, bring somebody in to help you. You know, it doesn’t mean it has to be forever. But you know, you don’t know what you don’t know. Right. And I know when I first started, I right off the bat, I worked with an attorney, because I knew I was in over my head. And I made that investment. Because I knew it was that important.
Dana Jonson 47:11
I as an attorney have had to hire an attorney, I can’t I can’t be my own attorney. I can’t be my own advocate. I’ve had to hire advocates and hire attorneys because I couldn’t do that myself. And so there’s no level of you know, can I do this myself? Well, if you don’t need to do anything legal, maybe. But you’ve got a lot going on. So sometimes, as you said, having a local advocate who’s familiar. And actually there’s a great question, what questions would you tell parents to ask an advocate when they are looking for an advocate? Because it’s not? It’s not a regulated field? Right?
Julie Swanson (The Life Skills Lady) 47:46
Right. I wish that it were. And we’re both members of COPPA Council of parent advocates and attorneys and advocates. We wish that it were the here’s what I say to parents. I have the reputation that I have. Because I hope it means I’ve done something right. And I think unfortunately, as advocates, we have to depend on our reputation. And get out there and talk with other parents. There are chat rooms today, there are groups that you can belong to talk to other parents. And look, we all have to start somewhere. I don’t know, there’s got to be hundreds of advocates in Connecticut now. I think there are now. Yeah. And great. There’s plenty of work to go around. But and I had to start somewhere, right? I didn’t always have 20 plus years of experience, right? But the person does need to know their stuff, right? And you need to find somebody who has a confidence level in this. And of course, you have to talk to many people. And at the end of the day, you have to rely on your gut as to what your it’s like when somebody calls up the phone and talks to you, Dana, and they’ve probably talked to another attorney. You know, they probably took me to say they’ve talked to four people, but they liked you the best. Right? So they hire you. So you have to do that. You have to do your homework. Ask other parents. I think that is one of the best ways. Yeah, right. Get into these chat groups, and just say, you know, who have whose everybody had? Who’s had you’ve had a good experience with? Is that a good sir?
Dana Jonson 49:25
No, I think it is. I think it’s important. I also always say that, you know, COPPA, which is CO pa.org is a national organization. And they do have a training process for advocates. It’s called their feet program. So I do always think that if someone’s been through that process, it’s not regulated. It doesn’t mean that they’re great, but that they have graduated successfully from that program, you know, that they’ve gotten a certain level of education on being an advocate. Right. I think most of us there. Most of us in this field. Were either former Special Ed teachers or teachers or parents and that’s What got us into this field? Right? Wrong or both, and I was actually special education, teacher, attorney, then parent, started backwards. But everybody has their own path here. But it is important to understand what somebody’s style is like, and you’re gonna find that out from other parents, what some what is someone’s nature, maybe somebody only does inclusion. Maybe somebody only does, you know, processing disorders, I don’t know. But but you know, and some people do everything. Like when I did this field, my background was primarily autism and ABA. So I did a lot of that, but again, was 20 years ago, I brought it right, I do everything now. But everyone has a niche. And, you know, Are they familiar with your district? I always find the question, you know, what have you quote unquote, one to be a very difficult one to answer? Because it’s, are you familiar with the players? Do you know, the district? Do? You know, are you somebody who goes in with guns blazing? Or are you very collaborative? And either is right or wrong? Right?
Julie Swanson (The Life Skills Lady) 51:07
And there’s really no good answer to that question. Because there’s so many factors going into the personality of the director of special education, exactly the pressure that person is under from the Board of Education. How much money do they have in the budget? You know, I mean, there’s, there are so many factors at
Dana Jonson 51:26
play, that are out of everyone’s control. So finding an advocate that you are comfortable with, that you feel gets you gets your child, and that you have heard really good things about, right, whose style you feel comfortable with. And like you said, I think word of mouth is always better than pretty much anything else. Right? Right. Other people’s experience experience. I think this has been tremendously helpful. I’ve learned I love it, I love the life skills, lady, website. And I also and I refer people to it all the time. And I also love your videos that you do. A lot of times, Julie will put out videos with her son, or about her son, my favorite ones are the ones who have his best friend, I absolutely love those because the two of them are so beaming just to be around each other. Like you can’t not be happy in a video. But no, it’s great, and showing live examples of all this stuff. You’re talking about, you know, and demonstrating how it works. And I think that there is something to that, to be able to look at that and say, Oh, that makes sense. It’s not theoretical, right? And, you know, give a real life application of the life skills there.
Julie Swanson (The Life Skills Lady) 52:38
So that’s, you know, social skills, right? Alex and his friend, their best friends. But in order for that to happen, right, Alex is nonverbal. And his friend also has autism is verbal, but really doesn’t speak. So, one might ask, Well, how do you know they’re best friends? Well, in our situation, we as the parents have become very good friends, right? And we we as parents have to put them together because they’re not going to call up each other and greet something to happen. So there’s a lot of orchestration there, right. But when they’re together, we know that they love being with each other. If I say, Oh, you’re gonna get together, you know, with him, and she says, Oh, you’re gonna get together with Alex. Or he might go to the calendar and say, Alex, you know, because she’ll be on the calendar. I can see Alex’s face beaming. I love being near each other with each other. So it’s an orchestrated social situation. And as parents, we call them best friends. Because in our hearts, we know they are. Yeah.
Dana Jonson 53:49
Well, and that’s what I love. You can see it. You know, it’s not, it doesn’t it doesn’t feel orchestrated. I know, there’s a ton of work that went behind that, right, like, when you see it, that’s what I mean, by seeing that practical application, like you can see it in them. When you mentioned one name to the other, or when they show up together, you can actually see that and feel that and if and as you said, it took a lot of work on your guy’s part and on their part. Right. And but this is the relationship that they have and nonverbal doesn’t mean you don’t have those relationships in your life and that they don’t thing. And what do we do when we get together? Leisure skills, Dana. Yes. That’s why they are so important. We thank you so much for joining me today. Is there anything that we haven’t covered that you think we need to let parents know? Oh, Lord, what are maybe that’ll be our next episode. Yeah.
Julie Swanson (The Life Skills Lady) 54:49
You know, you just you have to be you have to, you have to show up and do the work. And, and it’s not there’s no luxury in it, but no one You can love your child more than you. Right? And they’re worth it. They are. They’re absolutely worth it.
Dana Jonson 55:07
Thank you so much. I I so appreciate all the work you do as an advocate as a life skills lady, as a mom, as a friend, you’re just I don’t know when you sleep.
Julie Swanson (The Life Skills Lady) 55:19
Well, right back at you, though,
Dana Jonson 55:23
thing. Oh my God, I want to find Julie, you can go to life skills lady.com. And you will find her website and all her information. And I will also have it all in the show notes. Thank you so much for joining us. And we’ll see you next time on special ed on special ed. I thank you so much for joining me today. Please don’t forget to follow this podcast so you don’t miss any new episodes and leave a review and you have a chance. If there’s anything you want to hear about or comment on. Please go to my Facebook page special ed on special ed and find me there. I’ll see you next time here on special ed on special ed. Have a fabulous day. The views expressed of this episode are those of the speakers at the time of the recording and do not necessarily reflect the official policy or position of any other agency organization, employer or company or even that individual today.
