Wisconsin Public Television University Place Waisman Center Day w/Experts  A Panel Discussion on Autism  1/26/13 UP829 cc [APPLAUSE] We're very appreciative that our panel of experts is brave enough to sit up in front of everyone. So, thank you. Our first question that we received was, when did you first notice developmental difference in your child, and what was the diagnostic process like? So, anyone wants to jump in. Karl. >> We were lucky in a way that our daughter was diagnosed in utero with a form of dwarfism. So that kind of started us on this early road into the medical system. She developed seizures around six months, then seeing a neurologist, he pointed out at one of her appointments that she was rocking. That kind of raised the red flag for us that you might want to start thinking about this, which we did start thinking and did some research about autism. By age two, we got her in to see Dr. Iyama here at the Waisman Center and got her diagnosed with autism at around age two. What was the second part? >> What the diagnostic process was like. 

>> Once you get in, which is usually a waiting list, but once you get in to get the diagnosis, they just go through a good two-hour session of playing with your child, asking them lots of questions, and if they meet certain criteria, which is changing, you've all heard today, then they qualify them on the autism spectrum. >> Carla, did you want to share? >> My son, we started at the Waisman Center. We waited about nine months to get in here, had a two-hour meeting initially, came back for another assessment. They said he was on the threshold for autism, and then also his psychiatrist and behavioral therapist that was also working with him also did their own assessment too, and at that point, they diagnosed him with it. >> My story was a little bit different. I was an educator and this was my first child, and she was meeting the developmental milestones within a reasonable lag time. I was noticing that some of her friends, kids of friends of mine that were her age were doing things that my daughter wasn't doing. So I started asking questions and was told not to worry. It was my first child and everyone develops differently. When she turned about two we started to have a real regression in skills. 

She had language. She stopped using it. She was potty training. She stopped. She started screaming, banging her head on the kitchen floor. I continued to go in and say these things don't seem right. We had a new baby in the house. We had just moved to Florida. There were lots of explanations given to me, and because they were the doctor's, I trusted them. The biggest encouragement I would give is keep asking. 

It took me about four years before I finally convinced people to have a really good look. In Florida they won't diagnose a child with autism until they're six years old. So my daughter was seven before she finally received a diagnosis. So we lost a lot of viable time. >> Thank you. >> I would just like to share a couple of things that I think were important in our journey. We found out about our sons around the age of two, and, to be honest with you, if it wasn't for a mother's intuition, I've got to give my wife all the credit in the world here, let me tell you, and the fact that she is a registered nurse, so she kind of had some resources there, our pediatrician was everything's fine, everything's fine. And we kind of probably got a little bit lucky that the two guys were 15 months apart on the spectrum because my one son you couldn't see the issues as much as you could with the other one. And that really started the journey and really ended up helping both of them because we obviously got them diagnosed and we got a lot of early intervention. But my message there is perseverance. 

If you know and you feel it, you're probably right. And I know my wife was right, and then she got me convinced, and I'm so glad that we kept forging ahead. >> Thank you. The next question has to do, these are some educational questions. So, the first one was, what has your experience been with mainstreaming? Sort of what levels of inclusions you've experienced for yourself or your child.  >> We actually have had both experiences. He just got open enrolled to a new school this year. Prior to this school, he had been attending a school for three years where it was very inclusive, and he would mainstream for maybe tech classes, the fun classes, and that was not a priority for the school at that point. So this year he is fully mainstreamed with the regular kids, and it's been a world of difference for us. Just socially and academically. 

It's really helped. >> When you say a world of difference, what do you mean? Like positive or negative? >> No, positive experiences. Just experiencing the regular classes with regular kids and how to fit in with that population and just in general. Good stuff. Do you want to talk to them? [LAUGHTER] >> What do you like better? >> Yeah, what do you like better? Tell them. >> The new school. >> The new school. >> Biology. That's it.  >> Any of the other parents want to talk about inclusion? >> It's pretty individualistic a little bit because I'm a big firm believer in balance in a lot of different things, and I know for our kids it's been, inclusion is really big, and I believe in it and I think the kids believe in it. 

But at times they need their time too and they need their special space and whatever. So, I've got stories probably both ways where we've done maybe a little bit too much inclusion and it blew up and didn't work, and I have stories where I can tell you that my sons were just being isolated way too much. And my son will tell me, he says, dad, what's wrong with me? Nobody wants to be around me. I'm always off in the special room. I'm over in this hallway. That's where you've got to listen. You've got to listen and you've got to see and you've got to get involved and try to find that happy medium. And find out what works because it's so different. >> Anyone else? >> I can address that one too. This is a relatively new concept in education. 

I started teaching in '92, and I was a pilot classroom. This was a brand new idea. They were going to put all the special needs children in with the regular ed kids, and I agree with Tom. If you have a child with an individualized education plan, it is an individualized education plan. So being in the mainstream for a lot of our children can be wonderful. They learn social skills from their peers. Some of those are good; some of those aren't good. They learn how to follow the rules. We want our kids to be able to take social cues. If they don't understand what to do in a situation, look around, see what everyone else is doing. 

That's what we do as adults in new environments. There are lots of good things about being in an education setting with general ed kids also. However, the general education teacher may not be the best person to meet the needs of your child, and having a smaller pull-out program maybe the best situation for learning those individual skills. So always remember the least restrictive environment is what we're looking for for our children. We want them to be doing the best that they can do at the level they're at in the best environment that works for them. So don't let your school district give you a cookie cutter option. You have an individualized plan. >> Thanks. Sort of following along this idea of inclusion or being around peers, this question is actually specifically for Josh. So, yeah, if you're ready. 

[LAUGHTER] Can you talk about friendship and community involvement? And maybe Mom can comment too. Do you want to talk about your friends? Or where you go to hang out with people. >> I just started at Columbus High School this year, and I have a whole bunch of friends there. I go to YiPPE in Green Bay. And I have friends there too. And what was the other one? [INAUDIBLE] I don't know how to say that. [LAUGHTER] >> He's involved in, we've really seeked out support and services for him. So he does Special Olympics. He's doing Wisconsin Early Autism Project, the social group for teens, specifically for his age group, that meets first semester, second semester, and I guess they meet in the summer too. But he has been, the new school environment has been, like I said, truly, it's been an eye-opener for us and just really good for him. 

He was manager of the football team last year, and he actually was school mascot. So he's been the cardinal at basketball games and football games. But yeah, some pretty good community stuff. You have to really seek it out. [APPLAUSE] Do you want to say any more? >> This is really near and dear to my heart right now because I'm going through a lot of this right now. Point of context to start out with. I have two children on the diagnostic spectrum, and one is very high functioning and very verbal, kind of like his old man, and he wants friends. He wants friends like there's no tomorrow, and, quite honestly, he's also really interested in girls right now, and that's a whole other deal there too. >> Just like his old man. >> Yeah, just like his old man. 

[LAUGHTER] And often I get asked, when they see my other son, who's more true, the son I'm talking about right now is PDD-NOS. My other son is more true autism And people ask me, they say, Tom, what's more difficult? And I'm like, you know what, it's just all different. But in some ways, and not doing a disrespect to my other son, and I want to make that really clear, sometimes he's just kind of oblivious to it. The whole friendship thing, I don't think bothers him. It's not a big driving force for him. Quite honestly, that part makes it a lot easier for him, and it makes it a lot easier for us as parents. My other son will tear your heart out because you just want to be there for him every step of the way. He's just trying so hard to have friends. It means the world to him. He's been bullied, and the other thing that happens is when he's had outbursts and everybody in the school sees it, he's like, there you go, dad, I'm done. 

I'm done. I'm a social outcast, and I have nobody to blame but myself. I did it. And he will tell you, I just couldn't put it together. I did everything I could but I couldn't put it together. Can somebody just forgive me? Some of the things that are working for us, and I don't have all the answers, I just have journeys and I have stories, and I just keep trying every day like probably a lot of people do. IDS has some social groups that get together. >> What's IDS? >> Integrated Development Service. Thank you. It's really been good. 

My one son I'm talking about has forged some friendships there, and we've some of them over at our house. We've gone out to movies together. So that's kind of building. Special Olympics has also been a thing that's very helpful. This is a tough challenge for everybody. And, again, I don't have all the answers, but I just want to point out that everybody's that individual and that different. Some people do want to pull away and that friendship thing is too much and they can't handle it, and others really want it. >> Anyone else want to comment on friendships? >> I just think it takes, as parents, it's you making the friendships happen. It's not going to happen on its own. But, like Tom said, some kids aren't interested in that. 

As much as parents want to push that, it can be physically painful for some of these children to be in these situations. You really have to balance out do I push this because I want them to have friends, or am I pushing this because I think it's the right thing to do, or is it not right to push this because it's not what they're interested in. And I think we each have to ask ourselves those things. >> I know we had talked a little bit about social media too and social pressure. I think I'm going to agree with Tom a little bit in that I also have a child who's very high functioning so she's very self-aware. There was a day that she woke up and realized she was different. That was a hard day. There was a day that she woke up and her little sister had surpassed her in a lot of her skills and abilities. That was a hard day. She's very aware that she's different. 

She watches television and is very aware in the music and the movies of what teenage kids are expected to do. She wants to date. She wants to drive. She wants to have a job. She wants to go to prom. She wants all the things that everyone else in high school wants, and she's very aware that those probably are not going to be realities for her. So it really is a challenge. >> We've sort of mentioned a little bit about dating. Does anyone else have any other comments about how do you navigate the dating world and sort of those expectations? [LAUGHTER]  A love doctor. [LAUGHTER] >> You got any ideas? [LAUGHTER] I'm telling ya, I'm working on this daily, and I'm asking a lot of questions and I'm all ears. 

What I talked about earlier with the group that's sitting here before you is I'm a firm believer in collaboration, more minds are better than one. I have my thoughts, but everybody out there has their thoughts too. It's the kind of stuff that people just need to talk about. It can be uncomfortable to talk about, but it's realistic. That's normal. And, for me, I talk to my son about these things every day. I try to be really straightforward. I try to be honest with him in terms of even sharing the fact that it wasn't like I was out dating a ton of women back in the day either. Which he gets a kick out of. He goes, you didn't go to prom either, dad? But at the end of the day, I try to point out situations that sometimes I do see. 

When I can show him something that's real, he's a very visual thinker, and he can see certain people that maybe didn't have a girlfriend ever before and then they have a girlfriend now and that kind of gives him hope. The other thing is, I just tell him that it starts out with the basic stuff. You just got to treat people with respect and you got to be who you are. And at the end of the day I always tell him it's not if, it's when. Everybody meets somebody in their life that's very special to them. We'll see where it goes. I wish I had a great, perfect answer. I don't. I just think communication is such a big part of it. >> I hear Josh has a girlfriend. 

[LAUGHTER]  >> I was actually going to say, we're actually navigating this right now. He has a girl that is a friend. [LAUGHTER] And we're just trying to teach appropriate behaviors and boundaries, and they text quite often, talk quite often, and so we're kind of thinking that it's probably more than he's leading us to believe. [LAUGHTER] So it is very much teaching the appropriate boundaries and teaching him appropriate behaviors and what is acceptable and what's not. And just really kind of, we're embracing that. We're going to let him kind of navigate that a little bit and be supportive of him and see where. But they are planning to go to prom. She's in his class, so probably she's, I'm guessing, a PDD not diagnosed either because the mom is seeking diagnosis for her. So probably cognitively and behaviorally they're along the same levels anyway. It's kind of a cool thing for him. 

[LAUGHTER] >> Okay. I'm going to switch the questions a little bit. This question is, what is the one thing you would like to tell teachers or the school? Josh, do you have something you're thinking? >> I don't know. [LAUGHTER] >> Okay. So, the other people on the panel, what's one thing you would like to tell teachers or the school district? And this question actually came from someone who works within Madison Metropolitan School District and really was wanting to know what could they be doing more. So I really appreciated the spirit of this question. >> When my son started kindergarten, he wasn't identified yet or hadn't an IEP at that point. I had all the meetings with the teachers before he started school letting them know that socially he was behind. They wanted to wait and see how Brian was doing to see socially how he would interact with the other kids. He was struggling. 

They gave him a 504 plan. By the end of the school year, he did get an IEP and social skills were the main concern for him. And I think teachers listening to parents when they do have those concerns and hearing what the parents have to say and the suggestions might make the transition going from preschool into the kindergarten setting a lot easier. >> I want to definitely agree with that. They are experts out there, but you are the expert on your child. So you need to advocate that you do know what you're talking about. I also think there's a really good book, and I'm not going to remember it on the spot, but it's, I think, 10 Things I Wish My Teacher Knew, which everyone should read. Having been a teacher, I think there's a lot of kids, there's a lot of needs, we are being pulled a thousand directions. I think every school personnel is very well-intentioned and kind-hearted and wants to do the best they can. I think the worst thing we can do is send someone to one autism conference. 

They think they know it. Or they've watched Rain Man, and they think they understand. [LAUGHTER] So, really, I would ask everyone that works with children on the spectrum to consider them as an individual, to find out where they're at today, how can I help them to be in the next place they need to be tomorrow. What is the best thing for this child because what worked for Johnny might not work for Billy. So really to continue to break those stereotypes, to listen to the parents, and to have high expectations. Every child is capable of learning, and every child needs to have high expectations if we want them to grow. >> What we start each year with is, our daughter is 14 and she's at about a five- or six-year-old level for development. So she doesn't have the educational goals in the IEP. It's social goals. It's functional skills, what's going to help her after school, how can she build relationships, how can she count money, those kind of things. 

So we always start the year with the teacher just saying, for these first two months, just build a relationship with her because she's different. No matter what you've been through, how old you are, you've never met a kid like Emma. She's just adorable and charming and she'll suck you right in, and if you fall into these games, she's going to direct you where she wants you to go. [LAUGHTER] So, you've got to figure this out, and if you don't build this relationship, you're not going to get anything out of her. But once you do build that relationship, if you're consistent with her, she'll do amazing things. And it was our first special ed teacher that, I mentioned she had dwarfism, she barely stood until she was three, and she's in kindergarten, she said she'd have her jumping by the end of the year. She's barely walking, she doesn't put a lot of weight on her legs, and she also said that she's going to have her reading. She didn't like sitting down and looking at books. She said she'd have her reading by the end of that first year, and she had both of those. We didn't, as parents, didn't even expect that. 

But she saw and she just knew that if I challenge but do it in a way that she's capable of understanding that she can do great things with her. We're still friends today, and she's an amazing person. >> I just want to add, I would try to sum something up that's kind of big and complex with one word: trust. Trust that when my child is talking that he has his heart in the right place and he probably knows what he's talking about. He's living it. Trust that as parents we probably know our child pretty well. And then, trust in yourself if you're on the other side that nine times out of 10 I believe mankind really is good, and nine times out of 10 there are good intentions, so trust and believe in yourself and just think out of the box. Not everything has to be cookie cutter. That got brought up today. I know there's rules and regulations. 

I work for an insurance company so I know a lot about them, let me tell ya. But they're only there for a fence. There's a lot of things you can do inside that fence. >> And with that talk about humans being good, let's talk about bullying. [LAUGHTER] How's that for a transition? >> That actually was the next question. [LAUGHTER] Karl's on it. What has been your experience with bullying? >> Me again. Yeah, this is really tough. It goes back to, I keep talking about my one particular son, but I shared that example when he'd have his meltdown. We've all grown up and, as much as mankind, I think, can be really good, we have a not so good side about ourselves sometimes too. 

And I think people can see kiddos like this is an easy target. You're like, wow, that's a form of entertainment. If I push this person's buttons the right way, we're going to get the show. As a parent, I've seen it. I've dealt with it. I'm going to deal with it again. I could be dealing with it next week. It's communication, and this communication part is really hard because you have to listen to what your kid's saying, and, quite honestly, what's helped us out a little bit more is we've been going to the school sometimes. Go visit. It's amazing what your eyes and ears can see and hear that other people can't. 

And it doesn't always mean that the school or wherever they're going is awful. Again, I want to make that clear. Kids are pretty creative, and so they wait for that perfect little opportunity, maybe when they think, oh, it's in the hallway right here or it's over there and I can pick on somebody because there isn't anybody that's going to know about it. So again, it's that thinking out of the box. And listening and believing your kids. Kids just don't, I'm sorry, they just don't make this stuff up. When they're telling you something that's going on, it's real and you've really got to dig into it. >> Emma's not aware of a lot of things. She loves people, and her greatest gift is she can light up a room. But obviously as a parent, that's our biggest fear is she's not aware and she's also not going to take bullying the same way as a child that is aware. 

So she'll get bullied but just think that they're trying to play with her. Again, go to visit the school, absolutely. Especially, the times that bullying happens are recess, lunchtime, when the supervision is, teachers are in their teacher's lounge. They've got one aid for 600 kids. They're not watching everything. So we found that Emma would, when she gets excited, she would rub down by her legs, and some kids, boys, thought that was funny so they'd get her to do this. It's not real apparent to somebody that's just watching. It looks like they're playing and having a relationship, but when dad goes and sees what's happening here, yeah, that's bullying. And until you say it to the teachers and you use that word, a lot of times things aren't going to happen. As soon as you say that bullying word, their eyes are going to open up a little bit. 

So, again, like Tom said, you've got to be an advocate for your child. You've got to show up because, as great as they are, with funds being cut and the resources low, they can't do it all. >> Okay. >> Have you been bullied? >> Yep. I have been bullied, and I got my fingers slammed into my locker my first year at my new school, and then I started a club. >> Against, anti-bullying. >> Against, anti-bullying. >> Good for you. [APPLAUSE] >> Do you want to tell us a little bit about the club? Do you want to tell about the club. >> You're going to have people come and talk to the school. 

>> Yep, I'm going to have guest speakers come in. We're talking about having somebody come in like in February now. And that's pretty much all.  >> I'm not going to win a popularity contest because I want to talk about adult bullies. We think of kids in the school. Boys bully with their fists; girls bully with their words. It's a whole different dynamic. There are social nuances. Girls can be mean and it's discrete and it's hurtful. But I really want to address the adult bully concept, and it's kind of taboo and it's not going to make people feel very comfortable. 

We've all see the videos of kids being abused on the bus. We've heard of the assistants that are beating kids at school. It's, hopefully, the exception to the rule. But, again, we have kids that can't advocate for themselves. Kids watch out for other kids. If kids are being bullied by kids, other kids will likely tell us. If kids are being bullied by their assistant, by their teacher, by their phy.ed. teacher, by their coach, we often don't hear about it. And those are the concerns that I have because they're very real. Oftentimes we do background checks. 

We hope that we have good people working with our children. But there are people that gravitate toward working with the disabled, the elderly, people that are easily victimized, and it's happening in our schools. So I would advocate that if you are a school worker, watch how other people are talking to the kids. Watch their mannerisms, watch their body language. Advocate for the children. Visit their schools. Ride their buses. It's out there, and it's terribly scary, but I think we need to be just as aware of adult bullies. >> Along those lines, did you have something? You go ahead. >> The one thing I wanted to say for teachers, with my son, he has a hard time expressing how he's feeling to other people. 

Having the teachers be there as a model and showing him and giving him the words to communicate with the other students has been really helpful for him. >> The next question was, how did you learn to be become an advocate, or what are ways that you can become an advocate? >> In this role, you start as the parent who's trying to educate yourself as much as possible and try to figure out ways to work with your child and deal with all the things you're experiencing, but then the longer you're in this world, you want to then, A, help other people learn from your experiences and you want to become a better advocate for your child. So one of the things that we've found or we've done in the past is, through the Waisman Center there's a group called PALS, Parents as Leaders. It's for ages zero to six. As parents, you go to these seven or eight week seminar trainings on weekends and hear from different presenters, learn how to become a better advocate, work with schools, work with policymakers. They have three different groups like this. It's PALS zero to six, PIP, which is Parents in Partnership, which is six to 14, and then YiPPE, I don't know what it stands for. >> Youth and... >> Nobody knows. [LAUGHTER] It's YiPPE. 

>> It's fun. [LAUGHTER] >> It's 14 and above working in transition. And Josh is currently in YiPPE. And the nice thing about YiPPE is with the older kids, they actually get to go too. So instead of just the parents going, learning to become better advocates, YiPPE teaches the individuals themselves to become advocates for themselves. I don't know, Josh, if you want to talk a little bit about YiPPE.  >> We talk about transition stuff. >> Friendships. >> Friendships and then Fridays we always go swimming. [LAUGHTER] >> That's good. 

Anyone else about being an advocate? >> I think we're all advocates for our children from day one. We want what's best for them. I think sometimes we need to find our voice as an advocate because we might not realize that what we have to say is really important, and we are right when it comes to our child. I think we need to help each other. And I would just say that never go into an IEP meeting without someone there with you. There are people that are professional advocates, as myself. Take your husband. Take your mother. Take your girlfriend. Take your neighbor. 

These are really emotional meetings, and these are people that are professionals. They're using acronyms. They're talking about things that you may or may not understand. I've never left an IEP yet that I haven't been in tears just because you're hearing a lot of stuff and it's very personal. You wouldn't go to see your physician to get a serious diagnosis without taking someone with you. These are things, you wouldn't go to buy a car by yourself or buy a house by yourself. When you're making important decisions, by human nature we take someone along. Take someone with you and bounce ideas off. If something didn't sound right, if you have questions, go back and ask. I think the other piece is teaching our children to advocate for themselves, to stand up. 

We say use I messages. I don't like it when. But from when they're very little they need to learn that they have to stand up and speak for themselves and they have a voice too. >> Tom. >> Most of the stuff has kind of been said, but the big thing is, and a lot of it's happening right now, it's networking. It's collaborating and being open, sharing ideas, asking questions, and just finding those little lifelines of people that maybe have been in different stages and have gone through the journey so that you can ask the right questions so that you're in a position to be a better advocate. There was talk about self-advocacy, that's big. We're not always going to be here every day for our kids, so that's ultimately the goal is to try to help move them along in their journey, and that's not easy. There's a lot of great organizations out there that are willing to help. I've got to do my plug for the Autism Society. 

You can see this right here. But that's really what it boils down to is just ask, ask, ask, and ask. And a lot of people are more than willing to help. >> I think what Tom said before, too, about trust is the biggest thing, when you're going into these IEPs, we, Mary and I, my wife, you got to focus on the relationship with your team. If you go in ready for battle, you're going to get a battle, and it's probably going to be ugly. But if you go in knowing that everybody at this table has a different perspective and a different responsibility to bring something to your child's life at this school, I think the easier it becomes. It can be an actual very productive meeting. So, yeah, you've got to build that trust as a team. >> Okay, the next question has to do with thinking about your whole family and sort of balancing the needs of everyone in the family and how do you make those decisions and how do you do that, especially thinking about siblings. What has that been like for you all? >> I mentioned I have three boys. 

I was hoping my oldest, my 25-year-old, was going to be here today. It looked like he was going to, but something came up so he's not here. It's easy to forget that part of it. As parents, we have great intentions. We want to do the best for everybody. If you're dealing with these special needs kids, you can get pulled so far into that. You've got your other children that are sitting there, and they need help too. Everybody needs help. I tell ya, it's really hard. I will sit here before you as a parent, I've made a lot of mistakes in that, but I think every parent probably wants to hit the rewind button here and there. 

I think the biggest thing is, I think communication and talking about those mistakes has helped. What I want to share with everybody, I know that's been the greatest thing that's worked for me is when I can sit down with my 25-year-old and he realizes that I'm kind of a prideful guy. When I can look at him and say, I wasn't there for that, I blew it, and I'm sorry. It goes kind of a long ways. And then try to play to their strengths. What I've found is working a lot more lately is figuring out what my oldest son's strengths are that he really enjoys and see how I can incorporate that with his two other brothers. And those relationships are working out real good. My other son likes video games, and let me tell ya, that pulls the other guys in on that deal too. It's a hard challenge. It's a hard balance. 

The other thing that's helped too is, I know in Madison sometimes they used to have the sibs day that they used to do here, I found that that can be helpful. If you can get siblings together sometimes that are going through the same thing because they feel like they're alone too, and they don't know where to go with this either. They want to love their brothers and sisters but, yet, in this world, especially when you're young and you're immature, you're like I want to be cool and what's really the definition of being cool, and I'm not here to say what's right or wrong, but you've got to think like they do. And is it always cool to have your brother that's standing next to you doing something that, maybe he's flapping or doing whatever else, that's tough. That's real. That's real. And I think you've got to talk about it, and you've got to let them know that they're not horrible for thinking that way and share that and go through that together. And I think it helps. >> Carla, did you? >> It's been a challenge in our house. We do a lot of family meetings. 

Sit down and go through the expectation for all the kids and what they find should be appropriate behavior for all of them, and that has really helped because then they're all accountable. I have two older kids, and they get to see that Brian, my youngest, is also being accountable for things that he might be misbehaving and doing because a lot of times it was, but he's getting away with it. So now that they're involved in that process, it's made it so much more easier for discipline in the house. >> Well, for us it's pretty challenging. Our two oldest are actually out of the house living on their own. My oldest is married, and her husband has Asperger's, and they have a 10-month-old baby. So that's a whole other experience for us because Josh is PDD, so they're two different spectrums of how they react and respond to certain things. The two oldest girls have never really gotten along. There's always been sibling rivalry, and I think that's kind of what the driving force of problems between the two of them. Josh and our middle one, Christina, she provides respite for us for him, and so they have gotten a lot closer since the oldest has kind of been gone and Christina has just been out maybe the last year. 

But it's always been a pretty difficult thing for us. Nicole, like I said before, probably is not diagnosed but has been told she is bipolar, the oppositional defiant, obsessive compulsive. Pretty much everything under the sun we've been told with her. Christina has learning disabilities, and then we've got Josh. So all three of all kids are special needs. So it's been quite interesting in my household. >> Yeah. >> I think with siblings too, kids are very observant with how come I have this set of rules and these expectations and my brother or sister has different rules, different expectations? So, I would agree. I hear communication is a big piece up here, and kids can understand that equal isn't always the same, and sometimes what's fair is different for everyone. So, being clear about what the expectations are, being clear about what the consequences are, and being accountable. 

So your rules might look different, but you're going to be held accountable for your rules and you brother or sister is going to be held accountable for theirs. I think the other thing is, I had many years of being a single parent and I had to find time to do one on one with both of my children. The child with the disability can suck the lifeblood out of you. I had to make dates with my other daughter. I had to sit down and do something. We played Barbies, which, I'm a tomboy, I've never played Barbies in my life. [LAUGHTER] I don't know how to play Barbies, but if that's what you want to do, that's what we'll do. And I started to model for her just like I was modeling for my other daughter that, you know what, sometimes I get really frustrated with your sister. Sometimes I get really mad at her, and here's what I do when I feel that way. I had to learn that it was okay for me to acknowledge that I get angry. 

I had to validate that in her and give her some strategies. When you feel like you want to choke your sister, here's what I do. [LAUGHTER] And we do it on the Barbie. [LAUGHTER] >> That's why all those heads are off. [LAUGHTER] >> What I'd actually like to do now is open up the questions to the audience. We've been talking a lot and you may have had some ideas come up into your head. So I would love to hear your questions. Do we have mics for people with questions? Maybe not. Yeah. And I'll just restate the questions. 

I think I should be able to hear. >> My question is for Jane. You mentioned that, I really appreciate you talking about bullying in the schools, not just children but also adults, and I'm just wondering what strategies have you taken when you've observed some of those behaviors? Maybe not even the blatant kinds of things where teachers maybe are not being respectful of kids. How do you approach that where it doesn't get turned around to being the child with disabilities, their problem? >> Okay, I'm just going to restate the question. So the question has to do with bullying, and specifically when you've been in the school and observed something, how do you approach that with the school so it doesn't get turned around and basically blamed on the child with the special need? >> That's a tough question. [LAUGHTER] I already told you I don't win popularity contests. I agree, first, with Tom that we need to trust our kids. And back in the day when we were kids if I came home and the teacher called and something happened at school, something happened at school. The teacher was right and there was no discussion about it. Now we've come full circle where the kids have rights, and the burden of proof now has changed. 

There are pros and cons of all of those things. I think it is easy for people to say this child is difficult because of the disability, because of the behaviors, that it's the child's fault. It's also really hard as a professional when you see a colleague talking to a child or behaving in a way with a child that makes you feel uncomfortable. Or you walk by and you hear and exchange coming out of a classroom, or in the restroom someone is assisting a child and they're being very impatient, very curt. I always think, would I speak that way to a colleague? Or would I speak that way to my child? Or have we gotten lazy just because this child has special needs and maybe they are harder to work with? Maybe we do get impatient. I have been kicked. I have been hit. I have been spit on. It's not an easy job, but it doesn't give us permission to treat that child with any less respect or dignity than we would give anyone else. So I think the biggest thing is not only teaching our children that that's not okay. 

Just because it's a grown up doesn't mean they can treat you in a way that makes you feel, we talk about that feeling in your tummy that you get when something's not okay, and I think as adults, when we get that feeling in our tummy, we need to stand up and very respectfully and very professionally call each other on that and say I don't think you'd talk to me that way, I'm not sure you should be talking to that child that way. >> I was just wondering, I know Karl... [INAUDIBLE] But I was wondering how you dealt with... [INAUDIBLE] >> Okay, the question was how have you dealt with your child having significant delays along with the autism, especially as she's gotten older, as development progresses. >> The dwarfism piece was a whole whirlwind of emotions and people making it sound like it was a death sentence and oh, my god, this is the worst thing that could ever happen, and now, looking back, obviously, holy cow, if that was her only problem, jeez, this would be easy.  How do you deal with it is the question? It's one day at a time. Everything is one day at a time. You come to these things so you can learn, all right, what am I missing? What am I not doing? Because you spend so much time isolated from the real world that all you can see is your hand in front of your face, and how am I going to get her past this meltdown so I can get to grandma's house so I can get to school the next day. That's as far as you can think. And I think no matter how many disabilities you have or what all of our situations are, it's all the same. 

I think we'll talk a little bit about it, but you've got to take time for yourself. You've got to take care of yourself because if you don't, you just drop down into this sea of depression and misery. We are lucky enough to have a respite that comes in once a week so my wife and I can have a date night, and I don't know what we would do without that. It's our only moment of the week where we can just take a breath and have a normal conversation and get back together with each other because we're our strongest support system. Without her, I couldn't do this. Without me, she couldn't do it. Well, she probably could. [LAUGHTER] Your family, your kids, and we listen to this, some siblings actually talk about it, that they wished their mother would have taken more time for herself because she was a much better mom to them when she was in a good place. Because she spent so much time with her child that did have special needs, she didn't have time for them. That was their biggest message to their mother was we need you to take care of you because if you don't, then we're missing out too. 

I don't know if that answered your question. >> What things have you done to... [INAUDIBLE] >> Okay, the question is, what have you done to think about the transition to adulthood? >> You're the closest one. One week away. >> Thanks. Yeah, we actually are in the process of the transition right now. He turns 18 in a week. So we are seeking guardianship. The county is actually assisting us with that. They're not too quick on wanting to do it. 

So there's going to be a little gap in between getting a guardianship and him turning 18. Just making those decisions and what are we going to do with him. He's going to be in school until he's 21. That was something we had decided. He's getting some services through Northwoods in Portage right now. So, I'm not sure if school will provide his transition or if we're going to do Northwoods where they can provide employment options for him. But we had to start thinking about, is he going to drive? The doctor made that decision for us. So, luckily, we didn't have to make that decision as parents. They had decided that for us. So we aren't the bad guy on some of the stuff that they had not wanted him to do. 

>> Anyone else? Comments? >> I'll try to add a little bit. Right now my two guys are 15 and 16 on the spectrum, and we're really talking about the guardianship thing. We also kind of made the decision that they're going to go to school until they're age 21. We're talking about those things. We happen to live out in Waunakee, and we realized that both my wife and I work here in Madison and so much of the services we do, we're coming in here all the time. So that's something else we're talking about. When we built our house eight years ago, I just didn't really think that way. Karl was talking about take things day by day. Well, you do take things day by day but you also do think of some of these things, and all the sudden it hit us. Maybe we shouldn't be living in Waunakee. 

Maybe we should be living here in Madison. When we get in Madison, maybe we ought to live on a bus line. So what does that go back to? It kind of goes back to what I keep talking about: networking. What we're doing right now, to answer your question, is asking other people that are ahead in that journey, that are in that right now. What are you doing? Or if they've done that, what have you done, what works, what doesn't work? And then at that point, you try to make your decisions based on all the resources that you've tapped into. >> Okay, two more questions. Yes. >> Can I just follow up on that question? At what age did you start thinking as parents about the transition plan, and when did the school kind of collaborate with you on the transition? >> Okay, the question was, what age did you start thinking about the transition plan and when did the school start collaborating? >> We actually had been thinking about it probably since about, I'd say 15 or 16. The school, for us, the last three years hasn't been, the last school he was at was not as on board with putting that stuff into his IEP and really looking at doing that. So we had to pretty much seek outside stuff and start asking questions from people, from agencies. 

How is this going to work for us? We live in Columbia County, so we're fortunate enough to have family care or IRIS as an option. I know Dane County does not have that. So he will transition over to ADRC. He's on child long-term support right now. We're actually in the process of switching to ADRC side also with him. So our options will look different than some of the other folks from Dane County. I realize that. But you have to really push for what you're looking for and what you're wanting for your child, and just look for those. >> I know Madison, we just got the call from the Madison Metropolitan School District saying eighth grade students with an IEP, we're going to have some transition meetings. So that was nice. 

We haven't gone yet. So, eighth grade is when, to directly answer your question, is when this school... >> [INAUDIBLE] >> Fourteen. Around that. So that's specifically when this school starts talking about it. As parents, I think, again, like Tom was saying, while you're stuck in this world, unless you network, unless you surround yourself with people that are different stages, you're not going to know, crap, I've got to think about guardianship. Why do I want? Well, because as soon as he turns 18 you can't make medical decisions for him. And unless you have that guardianship, then what do you do? We've also worked with a special needs trust. So you've got to look at if something were to happen to us, what happens to Emma? Well, if she gets money, she then loses her resources to help support her. And these are these crazy things that we would have never known had we not surrounded ourselves with other people. 

>> Okay, great. Last question. Right there. Yes, you. >> What did you learn from the Waisman Center in the past year that has helped your life? Jane, can you answer that? And Carla? >> You know what? I've learned that I'm not alone in this. I come to events like this and I talk to people and I hear their story and I leave feeling like this is not just my situation. It's not hopeless. I feel like I have hope, I feel like I have support, and I'm not alone. >> After the diagnosis I really haven't been in much contact with the Waisman Center. I've been working a lot with Integrated Development Services, and they actually informed me about this today, this program that you guys have going on. 

So, I've just been learning as providers have been telling me information about stuff. >> Okay, great. >> I was going to... >> Okay, one thing. >> Okay. For us, we didn't get Josh's diagnosis until probably three years ago, and that came from Waisman Center. Now, had I not pushed and pushed and pushed all his life saying something's not, I was being told cognitive disabilities, ADHD, everything else, but you have to push and keep looking and keep looking until you get what you're looking for. But it wasn't until about three years ago when we came to, referred to Waisman, that we got our diagnosis of PDD. >> Great. Thank you. 

And I did want to mention, there were a couple of questions that people put in that were specific about services at the Waisman Center or follow up questions from the different speakers, and you'll be getting information where you can contact and find out more information in the email. And also, we have all sorts of tables where you can pick up fliers and that would also give you more information about how to get a hold of us and our services. Marcia. >> So, I want to end this wonderful day by saying some thank yous. Leann went that way, and I want to thank her for moderating the panel. I want to thank the panel for your incredible wisdom. [APPLAUSE]