Parent Advocates: Supporting Kids on the Autism Spectrum, with Stacey Hoaglund | EDB 78
(23 minutes) In this episode, Dr. Hackie Reitman sits down again with Stacey Hoaglund. She is the editor of The Autism Notebook Magazine, a Family Support Specialist for Family Network on Disabilities, the CEO of Disability Training and Support Specialists, project coordinator for Partners in Policy-making, author of “Go for the Goal: A Parent’s Guide to Creating Meaningful IEP Goals,” a tireless advocate for the neurodiverse, and the mother of a son with autism. Stacey discusses neurodiversity in education, harnessing hyperinterests, and employment for those with different brains!
FOR OUR FIRST EPISODE WITH STACEY HOAGLUND, CLICK HERE.
For more information on Stacey’s work, visit:
Family Network on Disabilities: http://fndbroward.com/
The Autism Notebook Magazine: https://www.facebook.com/TheAutismNotebook/
Partners in Policy-making: http://www.fddc.org/about/partners-in-policymaking
“Go for the Goal: A Parent’s Guide to Creating Meaningful IEP Goals”: https://www.amazon.com/Parents-Guide-Creating-Meaningful-Goals-ebook
or visit her at: https://www.facebook.com/stacey.hoaglund
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HACKIE REITMAN, M.D. (HR): Hi, I’m Dr. Hackie Reitman. we have the pleasure today of having with us at Exploring Different Brains Stacey Hoaglund, who’s an award-winning author, activist, advocate, and a million other things as you will hear through this interview. A real champion for those of us whose brains are a little bit different. Welcome, Stacey!
STACEY HOAGLUND (SH): Thank you so much for having me.
HR: What is your advice to parents who are faced with the fact and the reality when they come it that their child is a little bit different, whether we call it a disability, a challenge, a special gift. But they’re just kind of not like everybody else, which I think if you add up all the different ways are different I think the so-called “neurotypical” is in the minority. But what advice would you have for the parent of the special needs child?
SH: Well first and foremost, get hooked up with parent support groups and other families. i can’t overstate the importance of when my son was young, joining an autism support group. It was huge for me. Being able to know I wasn’t alone and that no matter how bad you’re feeling, because it is a grief process–I mean, anybody who becomes a parent has always had this thought that your son’s going to be a superstar football player or an astrophysicist and is going to be like this, whatever. And that your daughter may be the first female President of the United States, or whatever it might be. And then when you discover that those dreams would be really challenging and probably not very likely to happen, there is a process you have to go through in dealing with that. And the best place to be is with other families going through the same thing. Because guaranteed, no matter how bad you think it is, there’s somebody going through something even bigger and more impactful on the family and the life that they had compared to what they’re now faced with.
So that’s one thing. being able to get your child into a good school program, observing their classroom. So many times the family will call me with a concern about their classroom and I’ll say, “Have you seen it? Did you go in there? Have you done an observation?” “No.” You have to see it. You have to go. Because it might be as bad as you’re saying, but it might not be that bad. It might be much more workable than you might think it is. So that when you go to an IEP Meeting–Individualized Education Plan Meeting–which there’s at least one of those a year. I very much encourage families to have at least two. Parents can call in meeting any time that they like. Don’t go alone. Even if it’s a neighbor, a sister, a brother, a spouse, somebody else going with them because even myself as an advocate–I’ve been an advocate for about seventeen years now. If I walked into a meeting, and they said to me, “Oh, he was under the desk this morning.” Forget it, the rest of the meeting is over. Because I’m thinking, “why was he under the desk? What did you do? What did you do to precipitate it, what did you do after, what was going on? Oh my goodness, what were the other kids thinking?” So I can’t participate with all my brain wrapped up in it. But by having somebody there, they could maybe calm me down. It’s like, “Okay, we’re going to talk about that later, but let’s get back.” Or somebody that can just not be so emotionally vested in the situation that can think more subjectively about what the staff of the school might be saying is worth its pounding of gold. So being able to do that. And, you know, parents have to advocate.
Because frankly, our educational system is not funded the way it’s supposed to be funded in order to meet the needs of all the students. It’s just not. And the squeaky wheel gets the grease. It just does. I’ve seen kids get amazing services. But I’ve seen kids get nothing. And it’s bad and it’s sad that the uninvolved parent, if you’re lucky, you’re kid is getting a good quality education. But you’re lucky. Because I never, with my own son I never filed due process with any of the schools he was in. But being the son of an advocate they always assumed that I would. And so they–he got a really good education and he went to public school all the way through. But it was because they knew that I knew, what their jobs were, what the responsibility was, and that I always told all the schools that he went to, “If you need anything for him, you let me know and I will climb up that pole to get it. I will either go buy it myself, I will call the superintendent’s office if I need to.” But making sure that parent lets their school know, I’m in this too. I want to work together and if you need something you don’t have, you just let me know and I will get it. When my son was going to middle school–and you know middle school is tough for all kids. The middle school and the elementary staff were all together for a meeting, and who wants to get the advocate’s kid? The middle school looked like, “Oh my God, I can’t believe we’re getting this kid.” And I said, “Look, I see that little freaky thinking that you’re going to get my son. And I get it. I’m okay with that. But I’m going to tell you, if you take care of my kid, you will love me. We will get along great. But if you don’t, I will be on you like white on rice. And so the ball is not in my court. It’s in yours. And so I hope that we play a good game of ball.” Because it can really go either way. And they chose wisely. And it was good.
HR: Talk a little bit about the–something you face in your advocacy and in your legislative forays, the aging out process in Florida.
SH: Well now, we just switched over to “everybody gets a standard diploma.” That came about this last legislative session in the state of Florida. And I have mixed opinions about it because you can call it a regular diploma, but if you don’t have the course codes to get you into post-secondary education then you’re still in the same place you were in before. So I think that it was kind of like putting the cart before the horse. It would’ve been good if we would’ve set up programs that were modified completion point, meaning that somebody could go to a college that already had established programs that would modify different types of certifications like culinary. Like a certification in the culinary arts. To be able to have a modified programs so that when you do come out off standards but with the standard diploma, there’s something that you can go into that’s actually going to have some meat to it. So that when you get that certification in culinary arts, you can go get a job with it. I was talking to somebody from a pretty large organization company that employs a lot of people in Florida when that came all about. And she said to me that she was a little afraid now because she said before, “If I had somebody come to me for a job, who had a special diploma, I knew automatically I’m going to have to provide some extra support, I’m going to have to be flexible in my thinking when I schedule them, I’m going to have to provide accommodations, and I was good with that.
Now when people come to me with a standard diploma, I’m going to kind of assume you got this.” And so she said, “I’m going to have to do a lot more due diligence when I interview anyone because,” she said, “I wanna help. But when somebody that I hire kills my bottom line, they will be fired.” And so it’s like one of those things that I think that the schools training of self-advocacy and disclosure really needs to be significant because these young people that are now graduating, or aging out as the case may be, really need to understand how they have to disclose their disability to potential employers in order to be able to get the accommodations that they need on the job site. Or else, they’re going to end up being fired. And anybody who gets fired what that does to your self-esteem, your desire to try again. Why would you wanna try that again? You just got fired? So I want them to be as successful as they possibly can be as they move into the work force.
HR: Well and part of that means making it more acceptable in society.
HR: That when you do flag yourself, that it’s not “well I don’t even wan a consider you.” You know?
HR: Because society needs to understand. And again, not to be a goody-two-shoes, but it’s good for business, it’s good for the individual, and it’s very good for society. You know, you also touch on the matter of testing. And I saw one of your interviews on television talking about standardized testing.
HR: Why don’t you address a little bit what’s going on with the testing, where it is now, and where you’d like to see it go.
SH: Well, it’s still ugly. It’s still what it is. Lots of testing, lots of–it’s not even lots of testing as much of it is how much rides on the testing. Retaining kids because they can’t pass the standardized test. That was not meant or was made to measure a student that thinks in any other way but the tunnel vision way that I guess all kids are supposed to be in the center. And that includes the kids in the other end that are those gifted, really superior intellect kids. It does a poor job with them as well. So it really just tries to capture, I think, those kids in the middle of the road. And kids with special needs, it just doesn’t make any sense. And I’ll use my own son as an example. He did manage to pass the third grade FCAT. It was FCAT back then which I thought was frankly amazing because I thought, “Wow, it’s a hard test.” Especially when you’re thinking about autism. Questions on that test are things like, “What was the author thinking when he wrote this story?” Well that takes a lot of executive functioning, a lot of inferencing, which people with autism, they really struggle with that. So, not that he couldn’t read a story and be able to tell you black and white, “You’re going to ask me a question about what’s there. I’ll tell you what the answer is. But when you have to extrapolate information that comes out of left field, most of which is based on background experiences, or really doesn’t measure the ability. But, my son, he passed the third grade and then he did not pass it again. He didn’t pass it all the way through graduation. And he’s in college with a 3.3/3.4 GPA. Highly successful in college, and very hard. School is very hard for him. He’s not somebody with an IQ that’s 130/140. I mean he fluctuates right around that hundred. So school is hard for him.
HR: What’s he interested in?
SH: Actually film.
SH: He’s in film. He’s due to start at the Art Institute in a month or so.
SH: But yeah, he’s very–it’s interesting because when you spend time with him, you see. You see where he has some challenges. But when he records, and you watch what he’s editing-it’s his specialty. When you look at what he’s done, even me as his mom, I shouldn’t be but I’m still kind of shocked because he captures things on film that he doesn’t seem to really even notice in life. And so I’ll find myself saying, “God, Zack! How did you focus on the face, or why did you focus on the other character in the shot?” And he always has good response, and it always makes sense so I’m like, “Okay. You got this, I’ll just be quiet.”
HR: Bring him by here so we can all get to meet him.
SH: Yeah, he’s a good guy. But like I said, he’s a very hard worker. And I remember when he was in high school and part of the testing is that if you don’t pass you have to sit in these remedial reading classes. What they call intensive reading. Which I had told when he got to high school, I had told the principal, “It really doesn’t matter how many times he sits in reading classes, or if you have the best teacher in the United States of America teaching reading. It’s not in line with the way he thinks and he processes. So it’s not really gonna matter. I give you a lot of credit for trying but it’s really not going to make him pass a standardized test. His brain doesn’t work that way. And of course it didn’t. And then we got him as soon as we were able to, we had him exempt from the standardized test, I want to say late 10th grade. Because I thought that was ridiculous that he’s going to be sitting in these classes instead of taking courses that were going to be towards the rest of his life, such as film.
When I talked to his film teacher as a senior, we were on a committee together. And she said, “I love having your son in my class.” And I said, “Yeah, he likes film. She said, “You know, I think that he could teach my class. Because he comes up, he keeps–you know, he likes data. He likes information.” So, he not only watches movies, he studies movies. He studies the angles, and the lighting, and the shots, and the producers, and the directors, and the sound studios, and the, just–you name it. He studies all that. And I think that that too, you know when a lot of parents and professionals get frustrated over their child watching the same movie over and over, thinking they’re doing it because it’s a self-stimulatory behavior. You shouldn’t really make that assumption. Because a lot of kids are studying it. They have a desire to memorize the script maybe? Or to capture things, like if my son watches a movie–and there are many major motion pictures where it happens–where the glass is here in the scene. But in the next scene the glass is not there. He will pick up on that. And that’s why he’s going into editing, because he can catch that stuff that the average mind may just miss. But he’s going to pick up on that.
HR: That’s great, it sounds like he’ found his niche.
HR: What is what all of us need to do. We need to keep searching for things until you find your niche, and then harness that. And if you could make a living, as you say, doing what you love doing…
HR: And you really never have to work a day in your life, you’re doing what you love doing, you’re around people of like-minded nature, and you go from there. So it sounds like he’s well on his road.
SH: Yeah. And you know, the way I look at it is as far as employment goes I want him to be included in his employment. So even if it means a job at Publix or Wal-Mart or Sear’s or Penny’s or Home Depot, whatever it might be. That’s fine. If that’s where he wants to work. I am a big proponent of being included. Included with everyone else when it comes to your employment opportunities. And so if you can’t make a go with it within the film industry, he will always have that as a hobby and something that he enjoys. And his friends are likeminded in that so they enjoy it. They go out, and they film, and they love it. So if that’s a pastime for him, and that’s the way he chooses it to be with a job–because there’s a lot of people that work in a job every day that they don’t necessarily love going to but it’s a job and it pays their bills and does what they need to do. And if that’s who he is and he can spend his time when he’s not at the job doing what he loves, that’s fine too[00:16:08.16] Yes, ideally I would love for him to be in the industry. And if he can make that happen, which he has some pretty good contacts, so…
HR: That’s great.
SH: I’m kind of assuming that he will. But if not, that’s okay too.
HR: We’re talking here with Stacey Hoaglund. Who’s, as you can hear from this, is just doing so much for so many different people. What would you say in the world of disabilities of which you’re a champion is the biggest single thing that perhaps someone who’s not in the fray doesn’t get that you’d like to tell them if you can think of something like that. I mean, what’s the hidden pearl if there is any that you think society as a whole is missing in the whole picture?
SH: Well i certainly think that particularly with autism that people with autism are underestimated, by parents as well as providers. I can’t tell you the number of parents that I talk to. And myself included. When my son was son, he would constantly shock me with things that he would come up with. I’d be like, “Oh my gosh, that was awesome.” And so I used to say shame on me, I have to have higher expectations. So being able to raise the bar, to have higher expectations. To be able to give rigor to kids when they’re in school, true rigor. Not the same old nonsensical stuff towards going over, giving them mock SAT testing day after day and expecting that result to get any better. But again, to actually taking them where their strengths are and going in that door. It’s like a kid who has a learning disability. Not autism, just learning disability. You will not make progress if you don’t really look at their psych educational evaluation to see where are the shrinks and going that way. The educator will become frustrated because they’ll think, “Oh, we keep trying and it’s not working.” Well yeah, it’s not working because you’re not capitalizing on the child’s strengths. So that certainly is one thing.
The other thing is I cringe when, again, both parents and professionals talk negatively sometimes about their young child or their adult child, with autism–or any other disability–in front of them as if they weren’t there. And they didn’t understand. I was at the Autism Society of America Conference a couple of weeks ago and there was a panel on the stage for one of the keynotes. And the person who was doing the interviewing asked the panel of people with variety–there were six different people with autism up there. There was six different levels of autism. And there was a young woman who was using a communication device to assist her in being able to communicate her thoughts. And so the question was “if you could tell the audience one thing, what would it be?” And her response was, “Stop talking about me in front of me as if I wasn’t here. And I think that so many of us do it–and I sit in IP meetings every day where you’re fourteen years or older, you should be in your meeting. The student should be in the meeting. And if I feel that it’s, even though the child is sitting there and the child may not be able to verbally communicate, that everybody else is just talking about this person like they’re not there. And I have a way of redirecting the meeting. And I will purposefully ask the student a question or I’ll give them whatever accommodation I think they need in order to participate. Because who would want to sit in a meeting for two hours or so and hear nothing about your deficits, and what you can’t do. Nobody should be put in that kid of situation. That’s horrifying. I wouldn’t wanna sit for hours and have other people say, “Well she can’t do this, and she can’t do that, and her clothes never matches, and she never comes to work on time and…” whatever it is, nobody want to–so why would our kids want to go through that? And I see it in classrooms where I’ll be in a classroom and a teacher and a paraprofessional are talking about a student as if they’re not in the room. And it’s just they’re very disrespectful.
So my number one thing is respect. And even when I have a parent who’s really upset with the school I always tell the parent going in, “We’re going to be respectful, even if you don’t agree with your teacher. We’re going to treat them with respect. We’re going to treat everybody with respect. Because if you don’t do that, why would the other person want to work collaboratively with you?” So same thing when we work with our children and young adults with disabilities. Everybody wants to feel that they’re respected and their opinion matters. And we can’t do that if we don’t ask them what their opinion is and what they want.
HR: Now did you write another book also?
SH: No, I’m working on it though. I have two. I have one that’s going to talk about inclusion and how we’ve moved as a society from institutions all the way up to where we are today and really where we need to be in order to have a true cultural change for individuals. And then another one on just how to really look at, not only people with disabilities, but also everybody. Where your strengths are, and how when you do that, that’s when I finally go back to quality of life. That’s where you find your happiness. As if you can capture your quality of life and what you love to do. And if you don’t have a meaning for your life, no matter what it is, it doesn’t have to be grandiose.
In my position as the state coordinator for partners and policy-making, part of what you have to do is develop a project. And how are you going to impact the disability community where you are? And I tell them all, “Don’t freak out, it doesn’t have to be a project this big. You don’t have to get a law passed. It could be this big. It could be about influencing your neighbors. It could be about influencing your school. Influencing your family. So it doesn’t have to be huge. Just has to be how you can impact others to really change the way they’re thinking that’s more inclined with benefitting people with disabilities. And if you could get up every day and you know that what you’re going to accomplish that day is not only good for yourself but you’re impacting others, that’s where good stuff happens.”
HR: Well Stacey, thank you very much for being with us today here at differentbrains.com. We appreciate all the hard work you’re doing. So much, for so many. Thank you.
SH: It’s been a privilege.
This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.
Different Brains® Inc. founder Harold “Hackie” Reitman, M.D. is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the DifferentBrains.org website.
Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brains tumors, and underwent 2 brain surgeries before the age of 5. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).
Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity (released by HCI books, publishers of the Chicken Soup for the Soul series).
This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains In Between”.
In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains.org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains. Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.