FREE Member s Bonus. An Interview with Pam Ruddy By Dave Angel

Transcription

1 FREE Member s Bonus An Interview with Pam Ruddy By Dave Angel

2 00:00 Dave: Hi there, Pam. 00:02 Pam: Hi, how are you Dave? [chuckle] 00:04 Dave: Better for getting through. I've just had a bit of a nightmare. I'm so sorry, I'm a bit late. I've been tryin' to call through my computer and I couldn't get the call to go through to your phone, it was rejecting the call. 00:14 Pam: Oh, I'm sorry. Excuse... Technology. 00:17 Dave: I know, I know. I thought I was being all clever just sat there clicking a few buttons, though... [laughter] 00:23 Dave: So I got my good old normal plug-in telephone, I managed to find a way of doing that and recording it, so we're all good now, so I do apologize. [chuckle] 00:29 Pam: Oh, no worries. No worries at all. 00:31 Dave: 20 minutes rushing around to sort that out. 00:33 Pam: Oh my gosh. Don't ever... Oh my gosh, I am the most flexible person don't you worry ever about being late. 00:38 Dave: Cool. Thank you. [chuckle] 00:40 Pam: As many times as I've been late getting you stuff, I owe you 20 minutes. [laughter] 00:44 Dave: Oh no, no. It's fine, don't worry. So, how are you today? Are you okay? 00:47 Pam: I am good, how about you? Other than rushing around. 00:50 Dave: Yeah. Yeah, all good. Yeah, yeah, yeah the day is slowly closing. It's

3 about 20 past 9 now, so it's a bit later on in the day. 00:57 Pam: Yes, thank you for being up so late. I'm sorry our school year is just ending, so I have to stay at school regular day. 01:04 Dave: Yeah. No. That's great, we could chat and talk. Okay, did you get a chance to have a look at the questions I sent over? 01:09 Pam: I did, I did. How do you want to get this started? 01:12 Dave: Yeah. I'll just kick into it, I'm just gonna say, is there anything you are happy or not happy to talk about because I'm quite happy to work with you, whatever. 01:19 Pam: Oh, my gosh. No, everything is fine. I really don't have any... [laughter] I'm not one of those people either, I'm a very open book. 01:26 Dave: No, I can tell by your writing and stuff you're more than happy to share, which is great. 01:30 Pam: Yeah and it's just, it is what it is. I cannot hide it and nothing to be ashamed of, and I'm a fortunate person that I haven't had any really major, major catastrophes happen. So, I think I'm one of the lucky people. 01:47 Dave: Well, good. That's good to know. 01:49 Pam: Yeah. Yeah, I read some things about some horror stories and I've been fortunate that I've either diverted them, or I avoided them, or I just knew the right things to do that I didn't have to go through them. 02:03 Dave: Absolutely, absolutely. Well, may that continue. 02:06 Pam: Yes, fingers crossed. [laughter] 02:08 Dave: Yeah, completely. Absolutely. Okay, let me just get started with it then and I can always edit the start, whatever. So, just tell me a bit about yourself today, Pam. Can you tell me a little bit about yourself and your connection with Asperger's? 02:20 Pam: Sure. A little bit about me is that I'm obviously a mom and I'm also a teacher. And I work in a public school here in Virginia, in the USA. But my son is my connection to Asperger's, he's the one who has been diagnosed with it and we're a late, late diagnosis. He wasn't technically diagnosed until he was in 9th

4 grade, which is at age 15 in the US. I had many, many, many, many, many flags come up prior to that, and so I started researching and teaching Jay and working with Jay really since he was about 3 or 4 years old. This flag started going off and I went that way, and school never acknowledged it, it didn't change anything necessarily with his education because I did enough research to work through those loopholes to get what I needed out of that. But that's really how we got started with Asperger's and then of course, delving right into it and doing the major research. Is how we were there. 03:22 Dave: Sure. So, take me back to them kinda early days. What were the things you were noticing when he was age 3 and 4 that you were thinking, "Hang on a bit, something's happening there, I need to... " 03:31 Pam: Well it was... And 20 years ago was a long time ago it was before really Asperger's was well known. At least, to a common person. Nowadays you say it and everybody's like, "Oh." He started obsessing over things and perseverating on things. Like Thomas the Tank Engine, couldn't get enough of Thomas the Tank Engine. Couldn't get enough of doing certain activities repeatedly, over and over, like Lego s, building, anything that related to fine motor skills. Another big thing was that Jay went from baby talk, which was a little bit of a goo-goo ga-ga, to solid sentences and his vocabulary was very advanced. He went from mama, dada, to, "May I have French fries with my dinner, please?" It was a complete... There was no silly talk, there was no... Like how kids would change words into different things, he never did any of that. There was never that transition of language. I never had to explain how a word was pronounced, he knew how to pronounce them straight away. 04:40 Dave: From what age was that? 04:42 Pam: Gosh, he was probably 3, he started talking late. He was a later talker, which also was another red flag for me, he was a later talker. We had the year that he would only eat orange and I knew that wasn't right. We tried to get him to eat other foods and never complained about texture, or taste, it was color. I never went through a texture stage with him, necessarily, with food. It was all those kinds of flags that, until I put them all together, was like, "Hello." Never really connected 'cause they were far apart. It didn't happen all at once, they were long times, long periods. For years, he wouldn't wear anything but sweat pants. He never wore jeans, well, because probably of their texture. And not having the vocabulary of that to explain that and communicate that, we just went along with it. 05:39 Pam: So, those were the early stages of getting these red flags and I was like, "This is just... " Seeing my other friends and especially when school started, the preschool, and the kindergarten, he just was not with the other kids. I mean he was fine educationally, with all the milestones had been met, but he just was

5 not fitting in. We got kicked out of pre-school because he'd hit kids. They suggested that we stay another year and try to work things out, and I just could not do that. Because he didn't have the language to say, "Stop hitting me." So he chose to hit people. That's when I started going, "I need to really start figuring this out 'cause this is not quote unquote, normal." This is not the way I grew up, this is not the way I know through education as a teacher, kids don't do this. And I'm thankful that I did have my education background of teaching elementary school to know some of this things of what quote unquote was a normal milestone and what was not. That's how we got started. 06:46 Pam: And then jump a couple of school years, things were okay and then, in ninth grade Jay got severely depressed, started failing school for absolutely no reason. He wasn't turning in homework assignments, and started having these meltdowns of anger, and not wanting to go to school and all that. That's when I put the brakes on and said, "We need to step into this and really pursue this Asperger's thing. And if it's not Asperger's, what's going on?" Because this is also not the way a freshman in high school should be acting. And that's when we finally got our diagnosis. Along with a myriad of other things, he's an onion, you peel one thing away, something else pops up, one thing's peeled away, another thing pops up, but that was the driving force of it. 07:38 Dave: Sure, and how easy was that particular process, in asking questions more and more, and pushing to try and get some kind of an answer diagnosis? Was that an easy process or was that quite a difficult one? 07:49 Pam: I had my sister, who is a huge asset because she could see things from the outside in. I'm living this day today and I'm in almost survival mode, and I don't see the big picture. And she's the one that kept pecking at me and say, "You need to think about this, you need to think about this." We found a fantastic psychologist who is nationally known, she had seen him on the Today Show, which is like our Good Morning America, you have those morning programs, had seen him and he started talking how we work with adolescents who have Asperger's, well, if that wasn't a gift from god. He happened to be local, he was super local, he was down the street from us technically and he wasn't in DC, he was closer to where we lived, which was huge. We went there, he suggested to get testing, so we took the plunge to get testing, which is a huge expense to a lot of people, but we felt we needed to do it. That process was probably the easiest thing we had ever done, because they took him for six hours, we did a neuropsychological testing on him and that's what started answering... Then we knew what we had, then we knew what we were dealing with, and that part was easy, other than the financial obligation [chuckle] 09:19 Dave: Yeah, that's easy. What was the doctor's name? 09:23 Pam: His name is Doctor Oberschneider.

6 09:25 Dave: How do you spell that? 09:28 Pam: Hold on, I gotta spell it out in my own... [chuckle] Gotta spell it out. It's... Let's see, O-B-E-R-S-C-H-I-E-D-E-R, Oberschneider, there might be an N in there. 09:43 Dave: And he's fairly well known. 09:45 Pam: Yeah, he is in the metropolitan area of DC. He's a huge advocate for adolescents and Asperger's, huge advocate, which is awesome. 09:58 Dave: Awesome, cool, cool. So obviously this was around 15. One of the things I was going to ask you about today was the experience of high school from maybe there, onwards. What were some of the good parts, and what were some of the more challenging parts really, and how did you get through them? 10:15 Pam: It's the good and bad and ugly type of thing. The good parts were that Jay received a decent education. We found out after testing that he was brilliant, and I don't mean that just in a biased manner, I mean his test results where huge, he has a gigantic IQ, which most Asperger's people do. That helped me, as a mom, to start explaining things, 'cause I knew he could understand it. So I knew there wasn't a mental deficiency there. Once we got our testing I went to the school, presented them with this information and at this point sadly, a bad thing is is that, by the time these kids get to high school I find a lot is that, unless they are a behavior problem, they are not really concentrated on. 11:17 Pam: And, I wish I had the more wherewithal to be more on top of it, and I did not. Because they pushed him through the system at this point. Because he was so smart and he was passing minimally, this kid probably should've graduated with honors and I barely got Jay out of high school, but I didn't have any support, where I find in elementary school and even in some of middle school, you get a load of support. They are on top of these kids, making sure they are achieving what they need to achieve, they have the support they need and I think, once they get to high school, they have written them off, they're done, they're done dealing with you, they're done dealing with the kids. Like I said, unless they're a behavior problem, and they're in that office because of those issues, they really don't do anything. So, that's a bad thing. High school for Jay was not an active experience. He was not involved in sports. He was not involved in anything, no clubs, no nothing. So, because he was not involved in that, we made him get a job which helped things. But the things I did not like about high school is, like I said, is that I just felt like they dropped the ball on us, because I wasn't a thorn in their side. My kid was a fairly decent kid. He was passing minimally, and they just wanted to be done with him.

7 12:46 Dave: Yeah. 12:48 Pam: And that's disappointing. And I think things need to change there. I also think that there are some high school teachers, and this is my personal opinion, that I think there are some high school teachers out there that don't believe that this is an issue. They believe that these kids are just, "lazy". They don't take the effort to say, "Hey, I noticed you haven't turned in some assignments. Is there a problem?" They don't take that time. And it's hard for me as a teacher, personally, because I do that all the time with eight-year-olds. And my kid still acts like he's young, that you have to be after them and I felt like, I think... I had an experience one time that I truly believe that the teacher that was sitting in an IAP meeting with us truly believed, he thought, I was making this all up and that I was just covering for my kid to get him out of work. That he did not believe any of this was true, and he had no time to learn about it, and he had no effort to learn about it. He could care less. That he had to sit in on a meeting and that's all he cared about, and I think he thought I was making it up. 13:53 Dave: And what was he, just like a regular class teacher? 13:56 Pam: He was like a classroom teacher, yes. You had to have the general ED teacher sit in on these IAPs in high school, 'cause you're, "a part of a team," and it was sad to see that happen. And I think now that I know what I know, and I've given myself a little bit of voice, I probably would have said something, but I was still learning, too. 14:18 Dave: So, what gave you that impression that he wasn't interested? Was it overt, was he just saying, "No, this is just nonsense," or was he just... 14:23 Pam: Yeah, it was a lot of that. It's like, "Well, why should I call on him to check in assignments. He's 15, he should know to do the assignment." 14:32 Dave: Okay. 14:34 Pam: That's not the point of this, you know? [chuckle] "Why do I need to chunk assignments when I'm giving projects? He can do it. I gave him a syllabus. It's written down." It was just that snippet, snide little off-the-cuff remarks, and it bothered me, obviously I remember that conversation. It bothered me, but I'm also a colleague of his. I'm a teacher just like he is, and I take my IAPs when I go and be that general education teacher, seriously. And I know about the kids that I'm working with, and it just... That whole meeting was not fruitful, and it was not productive. It was a bad meeting, and, I mean, they got what they needed, and I got what I needed, but I did not feel like I was a part of that team. And that's how I felt with all of high school meetings, and all of that is that I was not a part of this. They were just doing their paperwork, is how I felt.

8 15:32 Dave: So, they kind of had to do it, so they were going through the motions. 15:35 Pam: Yeah, it was going through the motions, and "How are we gonna change things?" For the most part, Jay was fine. Like I said, he was smart enough that he was able to do things. I'm a parent active enough that I was able to say, "Hey look, you haven't turned this in." And we have a program, I'm sure England does too, where you can go and see your kids grades online, and you could do all that stuff. And so I would do that, and I would reprimand him, but I never, never once had a high school teacher, reach out to me and say, "Hey, I noticed Jay hasn't turned in assignments for the past four weeks. Is everything okay?" Never once. I never once had his case manager call me and say, "Hey, I noticed Jay hasn't been turning in work. Is there anything that we can do?" Never. 16:28 Dave: Sure. 16:30 Pam: And that's disappointing to me. 16:32 Dave: Absolutely. 16:33 Pam: It's disappointing to me, [chuckle] because, as a teacher, I do that with my own kids in school. Like, "Whoa, I noticed your kid is flunking, what's going on at home?" And that disappoints me severely. 16:47 Dave: Sure. You mentioned, obviously, that he's a good kid so didn't cause too many waves. You weren't too much of a thorn in their side. Would you do that differently again if you had to do it all over again, the thorn in the side bit? 16:56 Pam: Yes, absolutely. I would be more proactive. I would request different things as far as what I wanted out of my child's education. 17:18 Pam: I would probably be a little more in their faces about things as far as making sure that somebody was on top of him all the time. 17:25 Dave: Sure, okay. 17:32 Pam: Is what I would do. 17:34 Dave: Could you share maybe two or three tips for surviving high school? What you think, from your experience, what the three key things that parents need to be thinking about? 17:42 Pam: The first thing is, I would be in constant communication with your case manager. I would bug... The squeaky wheel gets the oil. I would not go to a

9 teacher. I would go to the case manager first who's in charge of those IEPs. I would definitely do that first and foremost. I would show myself at school a lot more than I did. 18:02 Dave: Okay, physically be there, yeah. 18:03 Pam: I would definitely be present in that school so they connected me with that kid. And it's one of those things you might have to light a little fire under somebody when they see me walking down the hall, they know that I'm coming for a reason. And I would definitely do that. I wouldn't be mean about it, I always was very professional and straight forward and I was never "bitchy" about anything but I would definitely do that. And lastly I think I would probably be more in tune to what was going on with my kid, like what books were coming home, what needed to be done, to be on that computer a little more often than I was. But it's exhausting. 18:46 Dave: Yeah, it's a lot, it's a lot, it... 18:48 Pam: It is exhausting, and I would drop the ball occasionally and then I'd have to pick it back up and start all over again. It's exhausting. 18:56 Dave: Absolutely. Thank you for that. 19:00 Pam: Sure. 19:00 Dave: And something you were saying he didn't really get involved with clubs, no real sports, but he got himself a job. What was the job and how did that pan out? 19:07 Pam: The job that he has, he still has, which I'm very proud of, is that he works at the local grocery store and he's the cart runner, and he is a bagger, a minimum wage job. Could he do more? Yes. Does he want to do more? No. Which we're still working on, motivation is huge which you had mentioned anyways, it's a huge factor. I helped him get the job. I helped him fill out the application, we did it together and I think that's major. I think you need to do it, they can't do it on their own, necessarily. I had a friend who worked at the grocery store that said that they were hiring people. And God love Jay, he went to the interview and he was straight forward and said, "I have Asperger's and sometimes I get distracted on things, you might have to tell me more than once." And they were okay with that. I think they liked the fact that he was upfront and forward about it. 20:04 Pam: He didn't mess up six times before they were like, "What is up with this kid." And so that was good. His Asperger's has really not been an issue because he doesn't have to do any major decision making, he doesn't work under pressure. His job has to be done before he can come home kind of a thing. And

10 he's a great worker 'cause he has a plan and he goes to work every day, he's responsible for getting himself there and I like... And because it's local, of course I have all my friends that force him to say hello to them. They say, "Hey, I know your mom, I know you're Jay Ruddy what's going on?" So the social aspect is good. When he's bagging he has to communicate with customers on a very minimal level, but it gets him out of that self zone, which is good. So it's really a great job for him. 21:09 Dave: So how long has he been doing that for? 21:12 Pam: This is his third year. 21:13 Dave: Okay. 21:14 Pam: So it's great. 21:16 Dave: Absolutely, that's good. 21:17 Pam: Yeah. 21:18 Dave: Has he got supportive boss and colleagues there? Are they pretty good? 21:21 Pam: He does. He's had some bad bosses but he's outlasted them so what does that tell you? And he's got some... This is how I perceive it, is that I think the female bosses, that managers that are females and they're older have a tendency to want to help Jay more, so they're more supportive with him, where the guy bosses don't really care [chuckle] 21:51 Dave: Okay, that's sad. 21:52 Pam: But some of the girls that... And it's a grocery store. You typically have younger people that work there. They're very supportive of him and they like him because he shows up, he doesn't back talk, he does his job so they're willing to let him slide on things. 22:09 Dave: Sure, sure. 22:10 Pam: They're more tolerant of him. 22:12 Dave: That's good, that's great. That's really good to hear. 22:14 Pam: Yeah, it's very good to hear. 22:16 Dave: Absolutely. So as well as working there, he's at college now, am I

11 right? 22:20 Pam: He is sort of in college. 22:22 Dave: Okay. What do you mean, sort of in college? 22:25 Pam: College has been a very interesting experience because we're stepping back as parents in that constant guidance role, and he's trying to step forward in an independence role, and we've had a lot of flubs. It's been a huge trial and error. Huge. The first semester did not go well and... 22:49 Dave: What kind of college is he in? 22:50 Pam: He's at community college, so it's a small... 22:52 Dave: So it's a local college. 22:53 Pam: Yeah. He comes and goes every day. It's a community college. He would not have survived a away school. 23:00 Dave: Sure. 23:00 Pam: And I don't think he would have survived a four year college, so we encouraged him to do community college, and he lives at home. It's different, but he's just a different kid living at home than a "typical teenager." His independence is not a priority to him. But college has been interesting because they don't talk to us anymore. Jay has to invite us into every meeting. We have to be invited to go speak to an advisor, and we have to bring him, we can't speak alone about it. So it's hard letting go of those things, but he definitely wants to attend to college 'cause I think he's even more fearful of having a full-time job, and what's going to happen after that. 23:53 Dave: Okay, okay. What's he been studying at college? 23:57 Pam: Just general education courses but he wants to get into the art field. He wants to be a concept design artist for video games. Surprise, surprise. 24:11 Dave: Yeah, how could that happen?! So, is that something he can do at his community college as he progresses through if he can specialize in later on in years? 24:19 Pam: No. That will require a four year college. And our community college... I don't know how it works over in England with university, but our community college is that they have a "Pathways Program" which, if you attend the community college for two years and you get a certain grade-point average,

12 and you achieve certain classes, basically, your general ed classes, you can apply to go to a four year college in Virginia that will accept you on a contingency program, and then that's where you can go into your minor. So he goes to Northern Virginia Community College now, and then he could transfer to a Virginia Tech or University of Virginia university. Will that happen? I don't know. And we're not pushing it. 25:07 Dave: Okay, that's something possibly for the future. 25:09 Pam: Exactly. And it doesn't even have to be done in two years. If it takes him eight years to get through college, then it's gonna take him eight years to get through college. 25:17 Dave: Yeah, sure, sure. At his pace, but no pressure. Sensible. Okay. What about friendships? How is Jay in terms of, does he have friends, does he not have friends? Is that an issue for you and him? 25:31 Pam: It's an issue for me because I don't think he has friends. He has a girlfriend who is not local, and that's a problem for me. She's a very nice girl. The distance is the problem for me. He has friends online, in the gaming industry. So there's a lot of that. That's where he has friends. He does not necessarily have... And we do have some neighborhood friends that he has. Very few, and it's the result of me, because they're my girlfriends' children. They're automatic friends, kind of a thing. But a lot of his communication is through the video games now, which is huge. Like he's talking to people over in England on a regular basis. He talks to people in Scotland, he talks to people in California, all on these gaming things that they're doing now. 26:33 Dave: So he's got the headset on, they're chatting away and... 26:35 Pam: All the time. It's becoming a part of his body. 26:40 Dave: Yeah. [laughter] 26:42 Dave: Does that extend beyond the gaming, or is it just simply he's playing the games with friends? Beyond that, you don't hear from them. 26:48 Pam: Yeah. He has a couple of friends at school that he'll talk about periodically, and that's when I step in and I encourage him to, "Hey, why don't you go ask so and so to go get a drink with you after class? You guys can eat in the eatery and talk about class and have a soda together." Or, "Have you thought about, after class, going to the computer lab and see who's in the computer lab?" It's a lot of constant coaxing.

13 27:20 Dave: Sure. And do you feel you're getting anywhere with your constant coaxing? 27:23 Pam: Some days I do, some days no. He found a friend that he knew in middle school. They were in the same class together, and I said, "Go hang out with Connor. It's fine." And he did that two or three times and that was about it. But the minute he comes home, there is no outside communication. And he lives in the next town, he lives four miles away. And they both drive, but they don't ever get together outside of school. 27:56 Dave: Okay. Do you get the sense Jay wants to do more of that, or is that more of an issue that you would like to see him do? 28:02 Pam: I think it's a mommy issue. I think he's perfectly content the way he is. He does not feel lonely. He doesn't feel as if he's missing out on anything. I think it's primarily, that's my anxiety. 28:16 Dave: Sure. And you say he's got a girlfriend. Is that an online experience as well, in terms of that being local? 28:22 Pam: It began online. Most of it is texting and stuff like that. Then he does go down and visit with her periodically. 28:30 Dave: Okay. So, local enough to get to. Not the other side of the world. 28:33 Pam: Two hours locally. 28:34 Dave: Okay, two hours. 28:35 Pam: Yeah, yeah. 28:36 Dave: Okay, sure. On the subject of video gaming, has that been a flash point for yourself in terms of needing to drag Jay away at times to do other stuff, or is he quite reasonable around how long he'd be on there for? How does that work? 28:50 Pam: The older he has gotten, the easier it has gotten. When he was little, it was a lot of dragging, and then we would have meltdowns and... Now twenty years ago, the gaming was not like it is today. [chuckle] And the same kind of thing is... 'Cause he would be watching a video or something, it was a lot harder to drag him away. We had to have certain times where we turned off all the screens, and we did the basic scenario everybody else does. As time has gone on, what I do is that he has an agenda that he has to accomplish in the beginning of the day. When he wakes up, he has a certain amount of things he has to do before he can log on, and go on from there. He's pretty reasonable. We never

14 really had many issues. I think because he knows where I'm coming from, if I tell him to... He plays in the basement. So if I tell him to come upstairs and do something, and he shouts at me, "Just a minute." He knows he literally just has a minute because I will be after him, that I am the priority, not the game. And we've had fights about that but I have accomplished my challenge and that is he now knows when I say, "Come upstairs", that, "You have to stop, and come upstairs, and do that." 30:13 Dave: Sure, sure. And that's been a fairly consistent message, shall we say, over time, with you? 30:19 Pam: Yes, yes he's pretty good about it and I think because he is getting older and he is maturing that he's kind of realizing that, "This is what I gotta do, I gotta take out the trash because my mother said I had to take out the trash, and I'll be done in five minutes and I can get back on the game and go." So I think that reasoning in the front of his head is starting to develop. 30:42 Dave: Sure, sure. And so is that your kind of... 'Cause that was one thing I was gonna ask about motivation. Is that one of your main motivators where then suddenly you need to get these jobs done? It's all around the game and... 30:52 Pam: Yes. Motivation is a huge problem, I don't know, I have never seen Jay have a fire lit under him really unless there's a new video game coming out, or there is something exciting, whatever it may be, and it's usually... But never huge whenever we made a big deal about doing well at school, that was not a motivator. Positive reinforcement not much of a motivator. He definitely has to have a quick response to whatever's motivating him, he has to have a quick satisfaction or that instant gratification. Nothing really long to keep him like, sticker charts never worked. Nothing that... "If you work... You are good for a week, I'll give you this." Nothing lasted a week. It had to almost be almost hourly, [chuckle] with him, it's instant gratification. So that's where a lot of our thing is, "You have to do this and then you can do this." And that's all, I don't even give long lists, long long, "If you do this, then do this, and then do this, and then you can do this. You have to do these three things and then you can go play." Whatever the case may be. 32:07 Dave: I'm assuming, around gaming. 32:08 Pam: It's always around that. 32:10 Dave: Fair enough. 32:11 Pam: Always. 32:13 Dave: And in terms of future stuff for Jay, are you looking at ideas to help

15 him with this employment options in the future, or you just take a day at time and that will come or not come? 32:25 Pam: There are days that I just take a day at a time, it depends how good a day it is, but I firmly believe that he will get a job, I believe he'll have a positive future, and I also think that I'm going to be the one to help him get that job. Which, I think there's a difference, because I do know of people who work in the human resource industry and it drives them crazy that moms are calling going, "So my kid had an interview today, how can I help him?" Like that goes on today, that's helicoptering. I'm going to have to be that frontal-lobe manager where we, together, are going to have to create a resume. We together are going to have to fill out an application. And most of this is done online anymore, anyways you don't go job hunting like when we were younger. You go through agencies and LinkedIn and all that other kind of stuff, but I believe I'm going to be the one who has to give him a list of, "Look at these seven job positions, let's go through each of these, let's see what's realistic and what's not." And I think that's more where I'm going to play a role as far as the future is concerned. And I have to get over myself of my parents never helped me do that, and he's just not wired that way. 33:45 Dave: I think if I say, "Jay, go find a job." I might as well tell him to go run out in the street and try to avoid traffic, I mean he couldn't do it and it's a needle in a haystack, so I think that's what that future's gonna look like. Do I think he's gonna get a job? I do, I think he's probably gonna end up making more money than I've ever dreamed of. I already told him he's taking me to the Oscars 'cause I believe that will happen. I think it's going to be a slower process, where when we were growing up, it was, You're 21 years you're out of college, go find a job." I wouldn't be surprised if jay was 30, 35. That kind of a future. I don't think he'll be 21 and living on his own like we were, and getting married and all that. I think it's gonna happen 10, 15 years later than that. 34:35 Dave: Sure, 'cause it's just a slower timeframe, and like you said, college could take six, eight years, whatever it takes. 34:41 Pam: Absolutely. What I think is good though is that, and you do it all the time, all the Facebook stuff and all that is that I think industries are realizing that this is a thing and that Asperger's is real, and that there are a ton of people out there. And I think employers are realizing that it's okay to hire somebody with this, that they're actually good workers. I think we're just coming to an age where this is all becoming more embraced, and these kids are no longer the freaks of the world, that they're actually becoming our workforce of the world. And I think that employers... I think eventually if somebody says, "Well, I have Asperger's." It'll be like, "Great, so do I. Moving on." And it'll be one of those things or, "Who doesn't have Asperger's? That's great." [chuckle] It'll be those things that there'll be... The world is just gonna be saturated with it and it's not gonna be technically an issue anymore.

16 35:46 Dave: No, and so many traditional jobs have gone now, there's only so much more is technical based, again playing into that skill base, a little bit more the video game world, the online world. 35:54 Pam: Absolutely. I even suggested to Jay, I said, "Really, the military is a fine option." I said, "You could be flying drones because it's like playing a video game, you don't even have to go to war anymore." And what I like about the military is that, they would tell you when to get up, they tell you what clothes to wear, they tell you go to take a shower. They tell you all those things that I do every day. So, there's a lot out there and I do think people are... Employers are sensitive, I also think that employers realize that, "Hey, if I hire this guy, like a Jay, I can count him on my disabilities list, and I'll look like a good employer." 36:43 Dave: Okay, so there's hidden benefits with employers as well? 36:46 Pam: There're hidden benefits with employers. But they're good workers, so it's not like they have to worry about anything. They don't need coaches in the job force like some other disabilities might need. They are independent people and... I just really think that it's gonna be a win-win for everybody in the future, and we're just on the crisp of that. It's just ready, the pot's ready to boil over, and I think eventually it's just gonna all boil over, and it's... 37:19 Dave: Yeah, absolutely. Some of these bigger companies I sorta mentioned, Microsoft, SAP, a few of these big tech companies have in their programs, and when they see hopefully how successful they will be, then others will follow suit and... 37:32 Pam: Yeah, and especially the cyber world with security, that is becoming bigger and bigger and bigger. And I don't think those people care [chuckle] But it will be a benefit to them with the ACLU, or whatever that is, that they hire disabled people, that's a win-win. 37:52 Dave: Yeah, absolutely, absolutely. So, on that theme of helping Jay looking at jobs, doing all that stuff in the background, how do you, as a mom, balance between letting him go, and letting him grow and develop as an 18 year old? And also on the other hand wanting to make sure he's safe, and that instinct to keep him safe and secure and not have some horrible things in the world. How do you balance that yourself? 38:13 Pam: I don't [chuckle] It's a juggling act all the time, and I am dropping those balls all the time. I would love to say that it's harmonious and everything is great, but I drop the ball all the time. And I will get on my rampages, and I'll be like, "We have to do this, this, this, and this." And then I'll let go for a while. That's a $64,000 question. I don't know how to balance it, and I worry all the

17 time, my heart worries all the time. Like, recently, when he got into that car accident, I was so worried. I wasn't worried about the car, or even that he was hurt, it was, "Is he gonna say the wrong thing, is he going to blow up at somebody because somebody said something wrong? Is a cop going to think he's a complete weirdo and on drugs, because he's not saying anything?" Those are the things that I worried about. And I think that's just the way it is through everything. You just have to back off once in a while. And the other thing is, he's gotta fail. I think there are times that he has to fail. And I think there are times that excuses are just not going to work. You can't just say you're sorry, and you're just gonna have to fail, and you're gonna have to start from the bottom, and try to climb that mountain again, you just can't balance it all. We don't balance it all in our lives, let alone somebody else. 39:51 Dave: Oh, absolutely. Absolutely. 39:53 Pam: It's a juggling act, there is no balanced scale, it is constant juggling. 40:01 Dave: Just day-to-day, situation-to-situation, acting the best you can, with the knowledge you've gotten. 40:05 Pam: Right. As you can tell I'm a talker, which is probably the worst thing for an Asperger's person, cause they don t' like to talk, [laughter] but whenever there's a teachable moment, I stop everything and tell Jay, "Now look, this can happen in the future. This is a moment you need to remember, this is something you can't forget." That's what I do. 40:30 Dave: Is that effective with him? A quick, burst of that? Will he then take it in the next time, yeah? 40:34 Pam: Yes. It is, and I think it's only because I'm Jay's mother, and he knows that's just the way I am. I don't know if it's a carte blanche for everybody, but he knows the way I am, and I have no problem stopping him in his tracks and saying, "Look, this is what happened, this can't happen again." Or, "This is a great thing, this has to happen again." I have no problem stopping my world and doing that. Because I know it's not that if I go back two weeks later and say, "Hey, remember when you got that great award?" He won't remember that. He doesn't remember that. It's now. 41:13 Dave: It's now. And is it quite short piece of teaching you do with him? 41:16 Pam: Yes, it's very short, quick, little language. 41:19 Dave: Sure, okay. And do you ever go back to that at a future time or not or is it just at that point?

18 41:26 Pam: It depends on the situation, it totally depends on the situation. But he's pretty good at learning [laughter] He's pretty good at remembering, and learning and... Especially for the big life experiences, just like we all are. We remember those huge life experiences of, "Oh, I'm never doing that again." And we never do. I just explain it to him. I don't think it comes to him naturally like it would us. When we do an epic fail we know, I don't think he necessarily knows that, so I choose to tell him [laughter] 42:00 Dave: Sure, sure, isn't that reality? 42:03 Pam: Yes. 42:03 Dave: Can you give me an example of anything that you can think of, of late? 42:08 Pam: Let's see. I don't have anything... Well, he, with the car, cars are huge with him, we had to get him a new car because he totaled the one in the accident. He was at a girlfriend's house and she backed into the car and did damage, absolutely did damage and stuff. Didn't kill the car or anything, but he came home from visiting her and said, "Oh yeah, by the way... " I said, "Wait a minute. If anything like that... This is a big thing that you have to call if something happens like that. It's like if you break your fingers, you don't wait till the end of the weekend to tell us that you broke a finger. This is big, it involves insurance, it involves other people; you need to tell us that this happens." And he was like, "I didn't realize." I go, "Well, now you know, this is your life lesson. From now on you call us when something big like this happens." And, it's things like that. Like that didn't dawn on him to call us and say, "Oh by the way mom... " [chuckle] Yeah, those kinds of things. 43:22 Dave: And in a sense that would've been a pointless conversation before it happened either. Just that hypothetical... It's not helpful to try and teach that. Until he's actually there, the practical example of it... 43:34 Pam: Yeah, because if I would have said, "You know if anybody ever backs into... " That would not, no. It has to be teachable moments. 43:42 Dave: Sure, absolutely, excellent. Okay, in terms of some... Obviously, Jay's 18 year old now, he's getting older. Do you have any problems still managing that meltdown, difficult behaviors, or is that something that you say he's matured a lot over the years, and that's reduced as significantly now or? 44:00 Pam: His meltdowns have reduced a lot. I think that's due to age, maturing. Also, I think it's therapy, he still sees his psychologist every other... We're down to once a month, at what used to be once a week. Now we're down to once a month. He's learning to control his meltdowns and if he gets very upset at

19 someone, it's very obvious, and I can see him now... His meltdowns are not like when he was little. He's not crying or anything like that, his are outbursts of anger. 44:38 Pam: So if he gets into a meltdown, he doesn't even rage. I don't even wanna say that what he does not rage where he goes around and wants to throw things and hit things, but if he gets that... All we do is, we stop it, and we're very... And once again, short, abrupt... People probably think that I'm just not a warm, fuzzy mom at all but it's a short and abrupt and then a slow down. So it's like stop, you know... We say, "Stop, think about what you're gonna say, take some deep breaths and then let's talk about what's going on." And then it will be like, "Whaaaa!" And I'm like, "Stop, slow down, it's over, the moment is over, what happened?" And usually that will really bring him back down, and then he'll explain what happened and usually that's a teachable moment. It's, "Well yeah you were at fault here." Or, "No, that person was wrong and I'm sorry that happened to you." Depending on what it is. And then we discuss it and then usually it's over, he's like a firecracker. He'll get really, really mad and then he's over. Kind of a thing. 45:57 Dave: Sure. And what about if he's elsewhere with you when you are not there, and can't support him at that time? Is that a challenge for him at college or work, or do you manage the... 46:05 Pam: He has learned to manage it, to keep it until he's out of the public eye. He knows that it's not acceptable to do that in public. And he'll come home mad, and he's probably fuming at work, but he knows to keep it inside, and then he'll come home and that's when he'll be really upset or want to meltdown about it or get angry about it. 46:32 Dave: Sure, and is that something you've had to teach him or is that just something he's always managed to do? 'Cause that's quite significant isn't it, to be able to hold that in. 46:39 Pam: I don't know if I necessarily taught him, it was always not acceptable to do these things in public. He was never allowed... As a little kid, the minute he started melting down, we left the situation. I never let him... I probably did, but I rarely let's say, would let him melt down, in public. I would snatch him out of a situation and either take him to a bathroom, take him to the car, take him to another room, I never let him do it in public. When he was little I was fortunate, I was home a lot. So if he started melting down the grocery store, I would leave my basket and I did that more than once, I would take him home, spend a couple hours at home and then go back and get my grocery basket, and do that. It was unacceptable for him to do anything in public like that. I just would not have that.

20 47:37 Dave: Sure, sure. That's a strong line. Okay. 47:40 Pam: So I don't know if I told him that or he just knew [laughter] It just became a learned habit. 47:47 Dave: Yeah, sure. But a positive one, absolutely. I mean that's the thing, I think that's the secret with a lot of these things isn't it. They happened over a long period of time, there's no one thing that can come from you being with somebody, it's just repetitive, consistent approach... 47:58 Pam: Yeah, consistency and not putting up with excuses. I mean, I just refused to put up with an excuse. And meltdowns, when he was little, were over same things other kids have. I want the lollipop. No, you can't have the lollipop. And he would meltdown probably a lot quicker and you weren't allowed to do that. "You are a little boy, you are... " Like that. And when he got older, absolutely not acceptable. "You are 11 years old, you are not to do this." That is something you do at home. Behind closed doors. I mean, it was just was not something that we tolerated. 48:36 Dave: No. That message obviously got through. Like you say, puts him in a positive light when he's out in the community, things are difficult or at work or whatever, which is good. 48:44 Pam: Right. 48:46 Dave: So over time has there been any particular books or things like that that you found really helpful you'd like to share? Anything else like that? Books, websites, DVDs. Anything like that that you could come across? 48:57 Pam: I never really did a lot of that stuff. When I started researching, I did a lot of Google. That's how I found you. And I am not a big reader and so I would try to find the quick and easy things to try. Your book by the way is fantastic. I like those things, like I'm doing the right thing. I know what Asperger's is. I feel I have a pretty good grasp on it. I feel I know what the medical aspects of it, so to speak. I like hearing stories that a parent struggles like I do, and it's okay, and there is something at the other end. It will be okay. Life will happen. I used my community. I had a friend, who, at school that I worked with, who has a son very similar, but a little bit older than Jay, who helped me off the mountain a lot of times. I definitely used my community. I used Jay's psychologist to help me reason through a lot of stuff. A lot of it was just quick stuff. I try to apply a lot of regular parenting stuff that you learn about, to this. And then a lot of times I just threw away the book and said, "I'm doing it my way. [laughter] And if it doesn't work, Oh well, it's my kid." It was one of those kind of things. Sometimes I think we get so wrapped up at looking at how to fix things that we just get so clouded. And sometimes you gotta just take a step back and take a deep breath and say,

21 "You know what? I'm doing it this way. I feel comfortable with it this way. I'm doing it this way." 50:50 Dave: Yeah. Sure. Okay. 50:54 Pam: I'm not really good at that answer. I'm sorry. 50:58 Dave: So thinking particularly sort of parents of kids who, around Jay's age, sort of 16, 19, 20. What are the three biggest tips you'd like to pass on around, high school, leaving high school, college, jobs, that kind of area? Is that three big things that you'd say that you've learned? 51:14 Pam: The three biggest things that I have learned would be, use your community resources. They're huge. Whether it is a personal psychologist. Whether it is a group of... I have a personal huge village. My girlfriends are important, with their kids. I constantly immerse Jay into social situations. So, if we're all getting together he has gotta come with us if he's available. So I use my community resources all the time. I use state resources to help me with things. So use your resources. The other thing is, it's going to be okay. They are going to be functional human beings. It's going to be okay. It's going to be fine. People have had this problem for thousands of years, we just put a label to it. Many of these people are wonderful human beings. It's going to be okay. My third tip is, I don't have one. I don't know. I mean, that life happens and don't excuse it, fix it. 52:42 Dave: Sure. 52:43 Pam: If something is not going right, take it upon yourself to do it. And that's the biggest thing, is that I've had to step out of my shell and get over myself of, "Well, my son's 18, he should be doing this." Well, if he's not, then do it. It's becoming more and more acceptable nowadays that you are involved in your children's lives, and I think we need to be involved. And when you go back to the old days of having your family involved... I have a huge family support system, and it's nice to hear sometimes when my sister says, "Pam, stop. You're getting into your woe is me situation. Get over it and move on. Life happens. And it's okay. Don't make excuses why he didn't pass this class. He didn't pass this class 'cause he didn't try. Move on." Those kinds of things. 53:38 Dave: Reality check. 53:39 Pam: Yeah. Constant reality checks. And it's going to be okay at the end. It's gotta be [laughter] You gotta have a little bit of hope or there's no use in living. 53:50 Dave: No. Absolutely, absolutely. Well founded. Brilliant. Okay. Is there anything else that I haven't asked you, that you think would be helpful, or

22 anything else to share, or is that a good point to... 54:02 Pam: I think that is... I think that's great and I just think that you just... The top of the mountain will eventually be in your sights and you will see it. And then there's gonna be another mountain and another mountain, and another mountain. It gonna be a... It's gonna be okay. And this too shall pass. The meltdowns will fade away. I know that's a big thing, is parents are, "So how do I solve melt downs?" And they will outgrow it. I've never seen a 35 year old Asperger s man on the floor at metro going, "I can't get on the train." It will happen. And be on top of it, be involved. 54:46 Dave: Sure. Excellent. Well thank you, thank you ever so much for your time. 54:50 Pam: Thank you, it was great talking to you. 54:53 Dave: Yeah, no it's been interesting. Great to catch up and actually hear about some of these things. I read your stories as they come through in the newsletter, which is brilliant. But it is nice to hear first hand. A little bit more about how you're getting on. 55:04 Pam: Well, and thank you for doing that, that has... Writing those articles are therapy for me also, because it's like, you know, things aren't as bad as you think they are [chuckle] 55:14 Dave: Yes and it's not black and white. It does reframe it, doesn't it? Definitely I'd imagine. 55:18 Pam: Yeah, and it's just kinda like, "Oh... " Like I keep saying, "It's gonna be okay." And don't get me wrong, I have cried, I have had my own meltdowns, and I've felt like a complete failure as a parent. And I think getting society to get on our page instead of us trying to get on society's page is huge. And I think it's slowly happening, I think its slowly happening. 55:49 Dave: Yeah, yeah, absolutely. 55:50 Pam: I think it's gonna be... But no. I thank you for all that you do with all of your outreach, and all of your resources, and really taking a stronghold on this, and really showing the world literally that there's a community out there that supports you. I appreciate that and I appreciate your humor also. [laughter] 56:12 Dave: Good, good. 56:13 Pam: And I think sometimes we're all so serious.