Transcript
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Hello everyone, thanks again for joining me on another episode of the Dorsi Rose Show.
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Today we have a special guest with us and his name is Song Feller.
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He is seeking to trademark the title of the Swiss Army Knife of Disability Advocacy advocacy meaning that he is involved with disability and special needs advocacy on a variety of levels.
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He is the parent of a 16-year-old son with autism who is also non-verbal.
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He is a former elementary educator for almost 20 years who transitioned into doing advocacy on the side several years ago and now has a growing national platform through his personal work and also with his employer, zoni and Friends, which is a global Christian disability ministry.
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John, thank you so much for coming on the show today.
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Absolutely Thank you for having me.
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What is Now?
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I usually ask an icebreaker question and if you could go without either music or books which would it be?
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That's a tough question.
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Yeah, that's a really tough question.
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I'm a pretty literate person.
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I do love to read.
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I do enjoy reading.
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Obviously I love to write, but I love to write.
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But if I had to give one up, it would probably be the books, because I don't know that I could go without music.
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Music is just my motivation and muse and I'm also a person who I can't ever just kind of work in silence or sit in silence.
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You know, I always need noise, even going to sleep.
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We have a white noise thing going, so yeah, so I I don't think I could do it without music, for sure yeah, I would probably agree with you on that, when I'm a big music guy as well.
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What has been your greatest challenge as a special needs father?
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good question question.
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You know I will tell you that, like most parents, when we started out with our son's diagnosis, we really struggled.
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We really struggled in the beginning, you know, first of all because your natural inclination as a parent is to try to fix your child right, try to find a cure, try to find some therapy or treatment that's going to do it.
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And in most cases, especially with something like autism and developmental disability, you know you may find things that are helpful, but there isn't any one magic bullet that's going to fix things.
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And so I think for me what was challenging is one to learn to first of all accept my child as he was and understand that he was still my son.
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He was still an incredible gift in terms of you know just his nature and personality and just you know the joy he kind of brought to everybody around him, to everybody around him.
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But what I also struggled with in the beginning too was kind of finding my role.
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Meaning I think what happens when disability comes into a family is that everything gets squeezed and problems that exist specifically in a marriage kind of get exacerbated.
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They get blown up.
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So for our family you know my son's mom, my now ex-wife she was an excellent mom.
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She's an excellent special needs mom.
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She was somebody that could always manage the therapies and the insurance and the appointments and all of that and that was her gifting and that was great and she was a very type, a personality, so that's what she leaned into.
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I didn't do that, you, I didn't do that.
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Most when you have disability most dads at least kind of the default is, well, I'm just going to throw myself into my work, I'm going to work very hard to support the family, pay for all of these things, and that's something that I hear from moms and dads all over.
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And the reality was I couldn't do that either, because I was never the breadwinner.
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My wife always made more money than me.
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So it became an issue of who was I.
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Who was I as a parent, as a husband, as a father?
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You know what kind of defined me.
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And over time, what I learned was that I was able to lean into my gifts, which really is advocacy, but in a bigger sense networking, communication, relationship building.
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Advocacy, but in a bigger sense networking, communication, relationship building.
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And so now I can kind of say that, while my son's mom is still that detail-oriented person, I'm more of the big picture guy.
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I'm the one who has the relationships with different organizations and also other people around the country that I can ask questions from, get advice from, get direction from that type of thing.
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So it really came down to.
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You know, get advice from, get direction from that type of thing, so it really came down to for me was not just who I was as a parent, who I was as a guy, because I think it really brought a lot of things into question and it puts you in such a pressure cooker that you really sometimes don't even know where to turn for support or help.
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And again, that's another big thing that I always talk about is getting support, getting community around you, building some intentional relationships with people who understand you.
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In the beginning we definitely didn't have that either, and that's, I think, also why it was a real struggle.
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Right.
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How has your son's disability affecting his choices or opportunities when it comes to education and independence?
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That's huge for him because of the level of nature of his autism.
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You know, he will never truly be functionally independent.
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There's really nothing he can do totally by himself, right, that doesn't mean that he hasn't learned and grown, but you know, it'll never be something where he can do totally by himself.
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Right, that doesn't mean that he hasn't learned and grown, but, you know, it'll never be something where he can do it by himself.
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I'll tell you a struggle early on, when he was younger, again, we weren't really sure exactly what the best education environment for him was.
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Now, his mom and I both had a background in teaching, but this was still our first child and you know, again, even though I actually had, most of my experience was in elementary, but I did have some preschool experience, but you know, I wasn't, you know, an expert on early childhood by any means.
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So you know, we tried some different things.
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We tried some different environments like private daycare, montessori, which actually I have a long background in Montessori education, and some of these different environments had some advantages.
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But the problem was, again, because he didn't develop any true level of independence where he could do some things by himself or most things by himself, because he always needed that support.
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What we really found was a lot of the environments that we thought looked good or presented as okay, this might be ideal for him.
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The reality is that they didn't have the right support for him.
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And one thing that I often always talk to parents about as well is, you know, when you're having this conversation about public school versus private school, because you know there's a default especially where I live in the greater Chicago area, there's kind of a default to say, well, don't send your kid to a public school because he's just not going to get a good education.
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Well, that's not always the case, right?
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And it's not to say I've worked at some good private schools.
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There are some good private schools out there, but private schools, at the end of the day, only have so much in terms of resources.
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Essentially, a private school is just a small business right, one-on-one with him all day, just really needed a very supported and accommodated curriculum for his needs.
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That's something the public school is built for and technically funded for.
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Now again, is every public school great?
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No, of course, not case.
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What we learned pretty quickly was okay, private school was not going to be a fit for him.
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Where do we go.
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So we actually had to make the decision because we didn't really like the public schools where we lived at the time.
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So we decided to kind of move heaven and earth, sell our house, move into a much better town with a much better school district.
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You know we definitely got some support from family along with that as well, but we were able to do the transition and he got into a great school district that he actually wound up, you know, going through all of elementary school, middle school and into high school.
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However, this last year at his public high school, it was extremely challenging and we found ourselves almost back to that same place where we were when he was a very young child, meaning the public school now could not meet his needs.
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Now, some of that was not necessarily their fault, because he kind of moved into this phase where he started to become slightly more aggressive, more challenging to work with.
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He had a variety of physical issues that were kind of affecting all of that.
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So that wasn't all their fault.
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But at the same time they were pretty clear with us that they didn't think they could meet his needs either.
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So what we thought could work for, you know, throughout high school and into.
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You know the transition years, the transition program years.
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We had to make another choice and this choice wound up with us placing our son at a residential facility as well as a day school in Wichita, kansas.
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So and that's about a, you know, that's about a thousand miles away from us.
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So that was not a first choice but it was the best choice given.
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You know his needs and the support that he required at this time.
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I can tell you that, as difficult of a decision and transition as that was, especially for me as a parent, I can tell you he's thriving and he's doing great.
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But there's so much surrender you have to do as a parent in order to make that choice right and to put him in a place where, ultimately, it's for his greater good and the best intentions of everybody in terms of what's right for his life moving forward.
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But it still doesn't make it easy when you have to make those choices.
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nonetheless, yeah, absolutely Absolutely.
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Now, when you were mentioning about the schooling system and some of them not being that great and not having the resources you know for him care, or they don't have the amount of special needs kids in the school system, it's a great question and here's kind of how I try to explain it.
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So if you attend a public school right and you have a child with a disability and your child has an IEP, that IEP is a legal document and that IEP is going to outline what your child needs in terms of so many minutes of, let's say, this form of therapy.
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You know, when it's available at the school, this many minutes or maybe a dedicated one-on-one they need to spend this many minutes in, let's say, like a resource room or in a dedicated special ed room, that type of thing.
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The problem is this Many schools and I have worked at public schools on the south and west side of Chicago where even kids that had the IEPs the schools didn't have the resources in terms of they didn't have enough staff so they couldn't supply a one-on-one.
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They didn't have the therapists in-house.
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Sometimes the therapists would come in from, let's say, like another school setting, but then if they weren't a person dedicated to that site, you know they weren't there all the time, like resource room.
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But even in that case, when it wasn't staffed properly, they just couldn't have the students there, you know, as long as maybe they needed to.
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So you know I would talk to parents about really kind of advocating for themselves, because the reality is is that by law, the school needs to be meeting those needs and that's a legal document.
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So, in theory, a person could, you know, pursue legal action, if they wanted to, against the school.
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In theory, a person could, you know, pursue legal action, if they wanted to, against the school.
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Unfortunately, a lot of the families just weren't aware of, maybe, the totality of their rights or maybe how to even engage that process.
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It was just well if this is what the school says, okay.
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And likewise, you know, when you have like, where my son attended school for years, you know that was a more affluent setting, so they could afford more staff, they could afford more resources, they had all of these things right.
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And so what it comes down to and sometimes here's how I use the example, maybe, let's say, from like, using like a retail analogy you know you can have the same product at two different stores, right, and I can go to one store and the product is, let's say, 25% cheaper.
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Well, I'm going to go to where it's cheaper, probably right, because why not?
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It's the same thing, but why is it more expensive?
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Well, yeah, there's markup and there's all these different things, but a lot of times it also comes down to the service you get at a particular store.
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Or let's say, you order something online and if it's more of a seamless process, if the customer support is better, if, let's say, there's some kind of an issue, you know, a lot of things factor into that and a lot of times it's the service you get, it's the support you get.
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So I sometimes will use an analogy like that to say you can have the same product in two different places and, yeah, you probably don't want to have to spend more for the same thing.
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But depending on what you're getting right and you know again, even, let's say, in the example of buying a new car, right, you could purchase the same car, two different dealers.
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But if one dealer is going to give you better service, if they are going to benefit you more throughout the lifetime of that car, making sure that you're taken care of and you know, maybe there's discounts or deals that they give you along the way or something like that for being a good customer, those are all things that play in.
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And so I use that analogy with public school to say you know, you could send your child to a school in a challenged area again like where I was on the south or west side of Chicago could send them to a more affluent area in the Chicago area.
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They're still required to get the same education right.
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So on paper it should be the same, but the problem is some places have the resources and some don't.
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It's that inequality.
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Now, again, by law, you know there's X amount of dollars that you know are supposed to be appropriated to every child and every special ed student as well.
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But again, it's all of these fringe things.
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Right, you know, if you walk into the school where my son went to elementary for years and you walk into some of the buildings that I've taught in, you can clearly see the difference, right, and again, it comes down to the resources and the materials and the staff and the training.
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So what I, again, always caution parents about too.
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And then to go back to that discussion about the private school, okay, it's also a conversation of you can walk into an environment that looks great.
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You know, and, as I tell people, anything looks good on a website.
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You know you can make anything look pretty on a website.
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Likewise, some of these environments you can walk into and you know it takes your breath away.
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But what's the quality of the education?
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What are the qualifications of the staff?
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What is the level of their qualifications?
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How much background and experience they have, specifically when we're talking about disability right, when we're in an environment like that, what do they have to offer?
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How are the staff trained?
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What materials and resources do they have?
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And in many cases, when it comes to like more of a special ed environment or working with kids with disabilities, they don't really have that because, for the most part, that's usually not their focus, unless it is their focus, unless it's a school dedicated for that.
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If it's not, you know, then you're going to have some lack, and I actually tell people you may be much better off at your local public school, even if you don't think it's a better education.
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The reality is is that don't be deceived by how something looks, either on a website or when you first walk up to the door.
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Yeah, it's great to have a nice environment.
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We all want that for our kids, but what is the actual quality of the instruction?
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What is actually going on behind the doors?
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What's happening inside the building?
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That's what people want to be aware of, and so I often coach parents, go to schools, talk to the staff, talk to the administrators, take a tour, get a feel for it.
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Don't make an assumption just based on maybe you know what other people have said or maybe, again, what you're just maybe hearing or seeing online, because that's not always accurate.
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Sure, how would you advise my listeners and even people in general, when they approach your son, who does have autism and who is nonverbal, to interact with him?
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Or do they interact, you know, with you and your ex-wife or his mother, and if they're an egg, to interact with them, or should?
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they interact with him?
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Yeah, and that's a fair question too.
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You know, the one thing that I always you know if new people are with him, or you know whether it's, let's say, in a social environment or in a school environment working with him.
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You know, we always encourage people to engage with him, right?
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Because the other thing that I didn't mention is my son is also nonverbal, so he doesn't speak.
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Now, he will utter a few words at a time, but you're not having a conversation with him, right?
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But what we remind people is that that doesn't mean he's nonverbal, but he does hear, right?
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So he is taking the language in and so, even though you're not getting the output, the reality is that if you're speaking to him or speaking to him rather than at him, kind of a thing you're trying to engage with him.
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He's probably going to understand you.
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Now, is he always going to do what you'd like him to do or go along with everything?
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No, you know, obviously, but at the same time, you know the same advice that I would give to anybody working with a person with a disability cognitive, physical, whatever treat them like a person, right, we start with treating them like a person.
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You know, everyone has some different needs.
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Everyone has some different challenges.
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Ok, how about we start by treating you like a person and then maybe, if there's something you have a question about, coaching people up, whether it's school staff or people in his environment?
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One thing that we actually used as a tool that I think was very valuable was whenever he would start, let's say, a new school year at his school so like a new class, and it might be some of the same kids, but some different kids too, whether it was in a school environment or at a Sunday school, at church, what we would do is we would actually show up and speak to the kids and we would explain hey guys, this is who Chris is.
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Chris is a little different.
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He's not going to communicate like you.
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He's probably going to have maybe some different behaviors.
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But guess what?
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Let me tell you all the stuff Chris likes.
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Let me tell you all the things he likes to do.
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Let me tell you the things that you know make him happy or put a smile on his face.
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If you can engage him that way, then great.
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You know, you've made a new friend with him, and I know he would very much appreciate that.
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So a lot of it also, too, is kind of getting out in front of it.
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I know that there is a fair amount of shame and stigma with parents when they have a child with.
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That has challenges and you know, a lot of times it's okay.
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Well, you know, some families are more um sensitive about, you know them kind of being in their own shelter environment.
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Some families do want them included with everything and and in the mainstream classroom and all that and that's great, um, but at the same time time get out in front of it and really embrace, you know, the kids and the environment and the staff.
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So they know one, you know a little bit more about who he is.
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But two, they also know that they've got a line of communication to you as parents and this way then you know that just kind of helps things later in the year.
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If something comes up or if there's a question about something you know, obviously they know that you're available for them.
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Going off on what you said there with you know the parents.
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You know growing up for my own self, you know my parents, you know allowed me to go out and you know.
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You know you know go out with friends, have my own.
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You know.
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Go out with the baseball team, and you know, play basketball and football and whatever else.
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You know I could do and you know figure out for myself what I could and could not, could and could not do.
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Yeah, and likewise with my son, you know, for example, he doesn't really play sports because he just doesn't have the coordination for it, but he likes watching things on TV, like he likes watching football with me, he'll watch basketball, kind of thing.
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And again, it's tough for some parents, especially when it's like dads who have like a son with autism, because a lot of times they have an expectation dads who have like a son with autism, because a lot of times they have an expectation Boy.
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I really thought that my kid would play this sport, or we'd go fishing or hunting or whatever we do, and the reality is, is that, okay, some things might not happen, but that doesn't mean they can't still be a part of it on some level.
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Like you know, we used to have a basketball hoop in our driveway at the house he grew up in, and you know I'd go out there with him and I'd shoot the basket and or shoot the ball at the basket.
00:22:30.955 --> 00:22:39.891
Whether I made it or not, he thought it was fun or hilarious, he'd clap, he'd, you know, laugh about it, kind of thing, and then he would try some of it too, and then we'd pass the ball around.
00:22:39.891 --> 00:22:53.910
So, whatever you can do, do that Right, because, again, it might not look the way you expect it to, but that doesn't mean that that person stop being your child, that they don't enjoy those things, that they just don't like that togetherness Right.
00:22:53.910 --> 00:23:10.020
And that's the thing that I really appreciated about you know, all those early years with my son was I really just treated him like any other kid and I knew there were some things he liked or didn't, but it was about spending the time, right, you spend the time with them and then obviously they know you, you love them.
00:23:10.060 --> 00:23:12.955
Yeah, my parents did the same thing, you know, for me.
00:23:12.955 --> 00:23:17.455
They, you know they allowed me to go out and whatnot, and I'm grateful for that.
00:23:17.455 --> 00:23:29.566
You know they, like you said earlier, they weren't the type of people that put me in a bubble and, you know, put me off to the side and said, no, he's not going to be able to do anything in this world.
00:23:29.566 --> 00:23:36.040
Yeah, yeah, definitely Going back to your son and being nonverbal.
00:23:36.040 --> 00:23:38.419
How do you communicate with him?
00:23:38.419 --> 00:23:40.818
What is that experience like?
00:23:43.009 --> 00:24:02.410
So the kind of default that we have in terms of that communication, you know, on the one hand, as parents, you know, it just kind of almost becomes that sixth sense of well, I know what he wants, kind of a thing, just because I've seen him ask for this a million times.
00:24:02.410 --> 00:24:10.565
I know his body language, I know what he's looking at, I know what he's kind of searching for, language, I know what he's looking at, I know what he's kind of searching for.
00:24:10.565 --> 00:24:21.960
You know, early on a lot of his therapists, especially ABA therapists, would teach him how to point at something that he wanted, a preferred item, which he will still do, and he knows some basic signing, like when he wants more of something, or, you know, to let you know what he's looking for.
00:24:21.960 --> 00:24:24.211
He does have a communication device.
00:24:24.211 --> 00:24:30.202
So he has an iPad that has the particular app we use is called Touch Chat.
00:24:30.202 --> 00:24:31.811
So it's just a communication app.
00:24:31.811 --> 00:24:35.241
I know there's a couple of different other ones out there and it just has.
00:24:35.241 --> 00:24:44.240
You know the app itself has just different windows and pictures kind of thing, and so you know it's essentially just like, you know, the Pax Picture Exchange.
00:24:44.240 --> 00:24:46.251
It's OK, what would you like to eat today?
00:24:46.251 --> 00:24:48.537
And you go to the page for restaurants.
00:24:48.537 --> 00:24:52.104
I want to eat here, I want to eat there, I would like fries, I would like a burger.
00:24:52.104 --> 00:24:55.596
Okay, so he will do that, I will tell you.
00:24:55.636 --> 00:25:07.618
That's challenging too, because there are times when he just gets bored of having to talk to you on there, and a lot of times either he'll just push any button just to make you satisfied or think he's satisfying you.
00:25:07.618 --> 00:25:10.894
But with some of his therapists, that can really get him to focus.
00:25:10.894 --> 00:25:15.817
The great thing is that not only can they get a lot of output out of him, but he can actually communicate.
00:25:15.817 --> 00:25:24.022
You know how he's feeling that day, or a little bit about you, know what he would like to do or what he liked about something.
00:25:24.022 --> 00:25:25.814
So we will get some of that.
00:25:25.814 --> 00:25:37.438
I know one therapist he's had that's really good will actually read like a simple chapter book to him and again, it's something definitely lower than his level, but it's something he can grasp.
00:25:37.438 --> 00:25:41.531
And he's able to actually answer questions through his communication device.
00:25:41.531 --> 00:25:44.097
He's able to spell out some basic responses.
00:25:44.097 --> 00:25:46.442
So that's awesome too.
00:25:46.609 --> 00:26:02.874
So it's and it's a challenge as a parent too, because, again, you're so used to just kind of assuming what your child wants or jumping in and saying okay, I know you're going for that, so let me help you, as opposed to challenging him more to say okay, use your words, tell me.
00:26:02.874 --> 00:26:06.894
You know, maybe not literally his words, but you know he can express himself in some different ways.
00:26:06.894 --> 00:26:09.923
So it's always a challenge as a parent to you know, maybe not literally his words, but you know he can express himself in some different ways.
00:26:09.923 --> 00:26:12.852
So it's always a challenge as a parent to you know, make sure that you're trying to pull that out of him.
00:26:12.852 --> 00:26:22.281
You know, but you know it is one of those things many times where it's like well, I just, I just know him and you know it also depends on your day, right?
00:26:22.281 --> 00:26:35.494
If it's, if it's maybe been a crazier day, okay, well, we're just going to fill in some of the gaps for you.
00:26:35.515 --> 00:26:38.981
But if you have more time and more space to do it.
00:26:38.981 --> 00:26:40.265
You know it's a great teaching opportunity.
00:26:40.265 --> 00:26:41.948
It's a great time to work with them on some of those skills.
00:26:41.948 --> 00:26:45.615
Sure, how did you go from being a teacher to being an advocate for people with disabilities?
00:26:46.457 --> 00:26:51.653
So my road from educator into advocate is a pretty interesting one.
00:26:51.653 --> 00:27:05.584
You know, as I kind of explained at the beginning of our conversation, I really started out just being another lost, confused parent, didn't really have a lot of resources, didn't have a lot of people to talk to, and I figured out that I needed community.
00:27:05.584 --> 00:27:10.702
You know, we didn't have a lot of friends who had kids with disabilities.
00:27:10.702 --> 00:27:20.632
We didn't really have a lot of people to lean into and especially as a guy, you know, although I had guy friends that you know maybe were married or had kids, they didn't understand what I was going through.
00:27:20.632 --> 00:27:26.173
And so it was kind of a journey for me that really started out, one to kind of develop community.
00:27:26.173 --> 00:27:37.892
So we had that support as a family and some of it started out very small.
00:27:37.892 --> 00:27:50.502
For example, I started a group, a support group for special needs dads right in our community right, we would meet at this restaurant every month and I started out with another guy in the area and took time to kind of get going.
00:27:50.502 --> 00:27:54.259
But we developed traction, we still meet and it's been going on for several years.
00:27:54.259 --> 00:27:57.377
So it was small things like that.
00:27:57.377 --> 00:28:01.761
But then I also had this I always had a desire to write.
00:28:01.761 --> 00:28:24.372
I always wanted to write and become a writer in some capacity, kind of as a passion of mine, and so the organization that I currently work for, which is Johnny and Friends one of the outreaches they had over the years that we would participate in is a family retreat, which is a week-long retreat for families of disability.
00:28:24.372 --> 00:28:26.076
There was a retreat center in Michigan.
00:28:26.076 --> 00:28:27.740
We still use it today.
00:28:34.890 --> 00:28:37.940
My son went for several years when I was married to his mom, and he's been back since with me.
00:28:37.940 --> 00:28:40.849
But at this retreat we'd meet all parents of disability from all over the Midwest basically.
00:28:40.849 --> 00:28:49.192
But there was a mom who I connected with, who did some writing, and I told her connected with who did some writing.
00:28:49.192 --> 00:28:51.178
And you know, I told her, you know I'm looking for some outlets, can you help me out?
00:28:51.178 --> 00:29:01.271
So she was writing for a very small disability ministry organization in Southeast Wisconsin and she said listen, we're always looking for more writers, more bloggers.
00:29:01.271 --> 00:29:04.058
Specifically, be great to have a dad, be great to have a guy.