Empowering People With Autism: Enabling the Abilities of the Neurodiverse with Stacey Hoaglund | EDB 43


In this episode, Dr. Hackie Reitman sits down 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 the importance of appreciating the gifts of the neurodiverse, how employment helps develop social skills, and the challenge of getting legislature passed that can help the family and individuals affected by learning challenges.

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. Welcome to another episode of Exploring Different Brains for DifferentBrains.com, and I have the honor, today, of having–right here in our studio–a legend down here in south Florida who does so much for so many: Stacey Hoaglund. And I’m not even going to try to tell you in the introduction how many different things she does. Welcome, Stacey!

 

STACEY HOAGLUND (SH):

Thank you. Thank you for having me.

 

HR:

Now, look. Let’s start by you introducing all of the 87 things and entities that you’re involved with? Take your time and let’s start.

 

SH:

Well, first and foremost, I’m a mom. Of two amazing young men. And so it was really my younger son, who has autism, that got me involved with the disability community. So, presently, I am an educational advocate with Filming Network on disabilities. I’m the state-wide coordinator for partners in policy making, which is an advocacy training program funded by the Florida Developmental Disabilities Council. I’m the editor of a magazine called the Autism Notebook Magazine, that’s a free publication that probably about 68-75% of our readers are parents, and then the remainder are providers. So we really try to provide something for everyone that’s within the autism community. I’m the president elect for the Autism Society of Florida. I spent quite a few years as president of the Broward Autism Society, and just–it’s an amazing organization. I wear a couple of hats with the Children Services Council as far as some special needs advisory committees and I just work very hard at trying to do my best at helping people through the very complicated system and making sure that people–particularly people with autism–get as much as they can out of life.

 

HR:

Well I want to thank you personally, because you’ve done such a terrific job and I know you’re working all the time doing all the stuff. I was going to interrupt you to say, why are you so lazy? I remember when the Children Services Council first came into being down here, and it was–at the time, it was considered very political going back. And I think they’ve done a pretty good job. What kind of report card do you give them?

 

SH:

Well, actually–sadly, we just lost Dr. Herm Fishbein, and Dr. Fishbein was hired by the Children Services Council a little over 10 years ago, I believe, in Broward. And he’s really the impetus for change there, when it comes to people with disabilities. He created the Special Needs Advisory Coalition. We’ve changed our name a couple of times over the years. And really shed the light on employment opportunities and how to prepare teenagers with developmental disabilities for the world of work. And he kind of sucked me along and pulled me into that. And that committee, even though Herm had left the Children Services Council, that committee has continued. And what the children services council provides–young people, because they’re just children. So, unfortunately, they don’t do adult work, which I would love for them to, but they don’t. Has just grown astronomically and I think that they’re–they’ve become much more less political. And much more grounded in individuals and meeting the individual needs of our community.

 

HR:

Well, that’s great. And, you know, I visited with Herm, up at the Unicorn School, which you are one of the co-founders of?

 

SH:

Well, I was–yeah, it was interesting because I was on education committee with Unicorn Foundation and somebody said something about they were looking for a project. And we started talking about, well, how about a school? You know, we could really use a school–a program that is enriching, that can really be very strength-based focus, because, you know, education–or public education–in general, focuses on your deficits. And there’s really nothing out there that looked at, where are your skills and abilities? That’s where we need to go with our instruction. And so we just started brainstorming it, and somebody said to me, who do you think for headmaster? And I said, ugh, Herman Fishbein! You know, it was no doubt in my mind. And we brought in Herm, and the rest is history. It’s just been an amazing road and continues to get better every year.

 

HR:

Very dedicated and persuasive and tough individual. He was good.

SH:

Yeah, he was great.

 

HR:

He got it all done. I was very much affected when I went out to the World Autism Conference out in Tucson, and I got to present there; Temple Grandin and Raun Kaufman and Stephen Shore and all the–real champions who are, themselves, neurodiverse. One thing that struck me was the importance they all put on, which I made a chapter in my Aspertools book, about harnessing the hyper-interests. Harnessing them and going with the strengths, as opposed to, stop doing that, it’s like let’s make this better and stronger, while you’re strengthening the other parts.

 

SH:

Right!

 

HR:

In your experience, you’ve found, also, that to work on the strengths at what we can do to maximize health, happiness, safety, productivity and independence whatever chance there is.

 

SH:

Right, right. Well, quality of life is something that everybody wants. No matter if you have a disability or you don’t. And if you spend day after day being beaten over the head where your weaknesses are, how would you possibly have a quality of life? So by looking at where a persons’ strengths are, and helping guide them down that path is so much more effective. I met with a family years ago. I remember their daughter was 19 and I met with the mom and the dad and the girl, and she had a cognitive disability, and we were talking about employment. She was 19 so I wanted to talk about–okay, she’s still in school, but, where are we going, what are we doing? And then the dad said to me, oh no, she not going to work. And I said, why? And he said because she can’t work. And I looked at her there, and I said, do you want to work? And she goes, I think so.

 

And so the parents, as lovely as they were, they really felt that there was nothing out there for her because she–that was the time when we had special diplomas still, in the state of Florida. And they just thought, she’s going to get a special diploma and she’ll just be at home. They had–they were an affluent family, so they could have her taken care of, and so that was not a concern, and when I started talking to them about quality of life, and how much quality of life we get out of what we do every day, out of our profession. It kind of started to bend a little bit, and I said to the girl, what do you like? What do you like to do?

 

HR:

And by the way, what do you like to do is something the parents hardly ever ask the kids.

 

SH:

I know, they’re usually shocked when I ask that question. And so she liked clothes, she liked earrings, she liked fashion magazines. And so we were able to get her community-based instruction through the school, at a 579–which is a clothing store for young women at the mall. And they hired her. And when I went in there to go shopping one day, she– you know, she was a greeter, so she wasn’t able to run the cash register, but she was so happy to be there and help people match their clothing that they were purchasing–and the manager said to me that she had no better employee than this young woman. So they won because they got a great employee. She won, because she was so happy, she felt fulfilled and she had a purpose to getting up and she was making friends and building relationships.

 

HR:

Giving people a job or an activity kills 10 birds with one stone. It really does. And I think we’ve inadvertently discriminated against adults with our focus on the children. Well, the children all grow up.

 

SH:

Well, you spend a lot more time as an adult than you do as a child. So being able to give the kids what they need as they’re coming through those transition years, but what the foresight to know that you’re preparing them for a very–you know, a much longer period of time. So the intensity of the instruction, when kids get to high school, should not be less than it was when they were getting that early intervention, because that’s — really, that intervention needs to last them a long time.

 

HR:

Where did you grow up?

 

SH:

In south Florida, in Hollywood.

 

HR:

And how did you get into all of this?

 

SH:

Just my son. Prior to having my children, I actually worked for Broward schools. And then I thought, I’m going to have my kids, I’m going to stay home, my life is going to be peaceful–I’m just going to travel and enjoy, you know, peace and tranquility. And then so I had my first son, and then I had my second son who had some developmental lagging early on and just like many parents, my pediatrician kept saying, he’s fine, he’s fine, he’s fine–and then one evening, a friend of mine who was a school principal was over for dinner and I saw her keeping an eye on him, and then she called me the next day and she said, I don’t want you to be mad at me, but you know, I have kids with autism in my school, and Zachary is showing some of those symptoms. And I said, I know, and I keep questioning it, but the doctor says no! And she says, I think you need another opinion. So I went to my pediatrician, and he said, well I don’t think that she knows what she’s talking about, but I’ll send you to a neurologist. And five minutes in a neurologist’s office, I mean, and now–looking back, I can’t believe that I didn’t see it. Because he wasn’t this autistic. He had a lot of issues going on.

 

HR:

And here’s what I speak about a lot–its multi-factorial. First of all, I make fun of myself and all of us parents, because were so blinded by love, and you get a combination of love, ignorance, denial–people telling you it’s going to be alright–

 

SH:

Right–well, dealing with a medical establishment that tells you, stop worrying, he’s fine, he’s a boy, he’s delayed–

 

HR:

Well–you know, when we interviewed Brian Udell, the autism doctor, who is vociferous, and says, look, the medical establishment has no clue. And I say, yes, but it’s not their fault because they don’t get educated in it. Doctors get no training. And my own personal journey, after my daughter, Rebecca started tutoring at Cumberland Academy of Georgia which was for Aspies and autism and other developmental learning challenges. The owner of the school met Rebecca for 10 minutes and said, you know, your daughter has Asperger’s? And me, the Boston-trained M.D., said, what’s that? Well, it’s on the spectrum of autism. Do you know what that is? Uhhh kind of. I had gotten no training, and that didn’t make me a bad person any more than it makes a lot of these teachers who don’t get proper training or policemen who don’t get the training, doctors–and go on down the line.

 

SH:

Right.

 

HR:

So it’s a societal kind of thing, and if society just realizes that we’re, as Temple Grandin said, “Different not less,” we’ll be better off. What is the legislative atmosphere like in Florida right now?

 

SH:

Well, we’re actually going through a major change coming into this next session because about half of our state legislators are going to be changing. So this past year we had Andy Gardner as our Senate President who has a son with Down’s Syndrome, so Andy was really — and his wife Camille are really passionate advocates at the state level and the voice for us on the Senate. Not only on the Senate floor, but he was the Senate President, and we’re losing him because he’s terming out. His wife Camille is an amazing woman and pretty determined, you know getting his legacy to continue with other legislators, but you know we have a major vote coming, not only for our presidency, but throughout our state, and people really need to educate themselves and get out and vote, because it’s really hard to say, because we’re going to be changing out so many people. Every year, the Florida Developmental Disabilities counsel puts on something called DD Day. ARC of Florida is also heavily involved with it and it’s in Tallahassee, and I was there I want to say February 18th.

And it was funny because I had been in House because the House, they were running late in their session that day. I got to my plane, my plane was like a 5:30 plane to come back. I’m on the plane, and rushing to come onto the plane comes these guys in suits. You know there’s like five or six of them sitting all around me, and so I looked at the guy across the aisle from me, and I said, “You guys from the House?” and he’s like, “Oh yeah, why did you think that?” And I said, “I was in the House, and I know you guys were running late today and you’re in suits and you’re rushing onto a plane, so I figured maybe you’re from there.” And they were like, “yeah.” They were both Republicans and Democrats, and so we just got into a conversation about disabilities and children and adults, and the needs of the state, and sometimes you got to catch them when they’re not wearing their “business hat,” you know, sitting on a plane for an hour coming home, and like I said, there were both sides of the aisle on the plane and both parties were so open to what I was saying, because I told them, this is not a partisan issue. This is just good stuff, and taking care of people in our state who you guys are contingents. You are our representatives. We go out, we vote for you and we expect you to represent us when you’re doing your job up there in Tallahassee. And they were so open to everything, and they agreed, “Yes, this is totally a non-partisan issue.” And I looked at two of them, one a Republican and Democrat and I want you two to make sure you work together on this kind of stuff, because when you’re doing this, nobody wins.

We had a big swell when my son was young, of the number of particularly of autism, so the adults entering — the kids who were kids — like 21 — 18-21, 22-years-old, there’s a big mushroom effect, and they’re going to be hitting the adult world and we’re not equipped, so we’re seeing some movements and Andy Gardner was a huge part of that, because he really pushed our university system to develop educational programs for people who wouldn’t be your typical degree seeking individual, but learning independent functioning skills and job skills with an inclusionary spin, not sheltered workshops and separate training facilities and things like that. The best and the safest place for somebody with a disability to be employed or spend their days surrounded by people who do not have disabilities. We’re also battling restraint and seclusion, and being able to have our — the people that we love that we represent as included in society as we can, and having them have a seat at the table. Because it can’t be the rest of us making decisions for them, they need to be a part of this as well. And they want to be part of it, and they may not be able to communicate verbally. That doesn’t mean they don’t have anything to say, they need to be part of the equation because if they’re not then we’re not doing our jobs.

 

HR:

Tell us about the book you wrote

 

SH:

Well the book I wrote is called “Go for the Goal,” and it really came about because I had teachers as well as parents calling me, “Do you have some good goals? Give me some goals. Give me some goals that I can write in a student’s IEP or in my child’s IEP” and I would over the years just email people, “Okay, here are some ideas…” and I thought this is kind of crazy, I have to keep sending these goals, so let me just get them together, and so that’s what I did. I put them all together and I tried to break the book down into — I compartmentalized it into young children and in these areas: social and emotional behavior here’s some goals I would recommend for a young child, and then all the way up there are the chapters towards the end of the book are for transition age kids with a strong focus on employment, independent living, social development when you’re out there in the real world on a job site and your boss says you have a 20 minute break and you’ve never been taught leisure time skills, and you don’t know what to do with a break.

A lot of teachers even forget that they have to teach young people with autism “what do you do when you have a break? What activity can you do in the lunch room or in the break room — if I work at Publix and I go into the break room, what can I do in there for 20 minutes?” That’s — people don’t think about the individuals with autism, they might be great workers, you tell them what to do and you structure it, they can be — you know you walk into a store and you see all of the cans of vegetables and everything, they want them perfect. They like it to look beautiful. But you throw them into a break room, and what do I do? How do I handle this? Sometimes that’s the most complicated place for an individual with autism is not on the floor working, but it’s on their breaks.

 

HR:

Tell us how our audience who would like to get in touch with you, tell us the various ways because you’re wearing so many different hats, where they might be able to find you.

 

 

SH:

Well, you know social media has really made access to people so much easier so you can literally go onto Facebook and throw my name in there and you’ll kind of find, I have a couple of different pages on Facebook. But if it’s something to do with advocacy, it’s fndbroward.com

 

HR:

What does that stand for?

 

SH:

Family Network on Disabilities and there’s for the partners and policymaking which is a statewide program that is fddc.org and there’s a link there for partners and policymaking. For The Autism Notebook which is the magazine that I publish and it’s free, so if you just search for that on Facebook, “The Autism Notebook,” you can — right there you can get the links to all of our publications through the Facebook page and the beauty in that is since we’ve had writers from five different continents, literally we’re everywhere. Because people from the different countries around the world who have written for us, they share it with their people, and so it’s fabulous. And everything about the magazine is positive. It’s like my “shining light” in my day because we really just strive to help people have an easier go at things, so that at the end of the article, I always stress to the writers when they say, “what do you want me to write, what do you want out of the article?” And I always tell them, “I want the person who reads it to come out at the end of it with new ideas of how to make the individual, either themselves or the individual that they’re working with, with autism make their life be better or easier or more productive or more positive. So the magazine is awesome.

 

HR:

So we’ve been speaking with Stacey Hoaglund today, and Stacey I wanted to thank you for taking the time to come down, you’re a fierce mom, advocate, activist, and you’re helping so many other people with all of the different entities you just discussed and keep up the good work, it’s been a pleasure to have you here.

 

SH:

Well thank you so much for having me, I really appreciate it.

 

 

This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.

Author Image
Dr. Harold “Hackie” Reitman is the founder of DifferentBrains.com. He is an entrepreneur, philanthropist, children’s activist, retired orthopaedic surgeon, and a former professional heavyweight boxer. He who currently serves as the CEO of Fort Lauderdale, Fla.-based PCE Media, LLC, the multi-platform production company he founded in 2004. Dr. Reitman wrote, executive produced and co-directed the full-length independent film, “The Square Root of 2” (starring Darby Stanchfield of ABC’s “Scandal”), and is the author of the book “Aspertools: A Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders and Neurodiversity” from HCI Publishing. He also hosts the DifferentBrains.com interview show “Exploring Different Brains.”
Author Image

Harold Reitman, M.D.

Dr. Harold “Hackie” Reitman is the founder of DifferentBrains.com. He is an entrepreneur, philanthropist, children’s activist, retired orthopaedic surgeon, and a former professional heavyweight boxer. He who currently serves as the CEO of Fort Lauderdale, Fla.-based PCE Media, LLC, the multi-platform production company he founded in 2004. Dr. Reitman wrote, executive produced and co-directed the full-length independent film, "The Square Root of 2" (starring Darby Stanchfield of ABC's "Scandal"), and is the author of the book "Aspertools: A Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders and Neurodiversity" from HCI Publishing. He also hosts the DifferentBrains.com interview show “Exploring Different Brains.”

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