Note: This interview was recorded in 2018.
Welcome to the Mothers on the Frontline Podcast. Mothers on the Frontline is a nonprofit organization, founded and run by mothers of children with mental illness to promote caregiver healing and children’s mental health justice through storytelling. Our vision is a world in which mental health is destigmatized, respected, and prioritized as an integral part of the overall health of individuals, families, and communities. In this episode we hear from Dianne Thacker, a social worker by profession, a stay-at-home mom by choice, and someone who is dedicated to helping other families find the resources they need to help their children.
Interviewer: So, hello. Thank you for being with us today. Can you tell us a little bit about yourself. Before or outside of mothering, who are you? What do you love to do? What are your passions?
Diane Thacker: Okay. I’m Diane Thacker. I’m a social worker by profession. A stay-at-home mom by choice. I dubbed myself as a resource specialist. Later in the game I’m 50 years old and I am ageless.
Interviewer: I love that.
Diane: Yeah. I don’t get in to, “Oh my gosh. I’m gonna be old now.” I celebrate birthdays because you can. No matter the glow on the cake.
Interviewer: That’s right.
Diane: Okay. I love to read books. But I have a kind of a weird quirk about it. I start reading some of the end pages first.
Interviewer: Oh, do you? You like to know what’s coming?
Diane: Yeah. Or to kind of see what the outcome’s going to be. Because then if I get hooked in, then I could go back to and start reading it. Otherwise it’s boring and I’m not going to read it. And then it takes like maybe two or three days just to get it done.
Diane: Okay. I like to do genealogy. Although that wasn’t a bug issue when I begin with. For those genealogist who’d go, “I know. I know the bug.” It became a- let’s see and if I call that, an assignment. When I was fourteen and I was in my great aunt’s house in a small town called Zearing, Iowa. She asked me one day, and I’m just like, well maybe I was like eleven years old, if I knew who my family was. And of course I knew my mom’s side because that was all we knew. And I didn’t understand the question as to why she was asking me that. So I’m like,”Why?” And she’s, “Well because, you know I’m working on my family tree here.” And I’m like, “Oh, wow.” She has got a big table with all of her books and the papers. And I’m looking at her bay- this big wave bay window and I’m like, “I wish I could be outside now.” But I couldn’t. So we were you know hanging out and she says, “Well, come here Diane. Come here.” So we started looking at her stuff and I was kind of like, “Wow.” And she started connecting the dots. And for me now, connecting the dots is very important. It doesn’t always happen but when you look back at your life and you see things happening, “Oh wow that’s why that happened” and will get to that later. So then just about that time, I was doing a homework assignment. So that kind of fell into place. There is your dot. One of your dots. And so I said well- both side of your family. So in this case, we didn’t know that much about my dad’s side. My dad had died when I was six and a half.
Interviewer: You were young.
Diane: Yes, I was. But I did know him and I have memories of him. He was very determined. He dealt with- he had some health issues of his own. But he was very determined, very passionate. He knew-he wrote poetry, which is what I do now. It was just me and my brother and my mom. I don’t know. And he liked putting things together with his hands- fences and stuff. And he also cared for small animals.
Diane: Yeah. I do remember one day he was around, but I remember sitting outside of my house and there was what appeared to be a woman who was homeless. And I really felt the need that I needed to go and give her something but my mom was like, “We don’t know that person.” But there was that social worker helping persona in myself that was coming out early. I lived in the neighborhood where it was deemed unsafe. But to me it was like, no there was nothing unsafe here. My friends are here. I still have- I have a friend who, I’ve known her for, is that fifty years old now? Seven. What is that? That say seven? Forty three years old? For forty three years, yeah.
Interviewer: That’s great.
Diane: Yeah. I don’t know. We did- we went everywhere together. Got lost together. Got in trouble together. [laughter] For a month together. Yeah.
Diane: Yeah. So then, one day an event happens when you have to move out of your neighborhood. So you move from your one location to another. At the time, we’re like, I don’t understand why. But going back, you look at the little- okay. So that put me into a parochial school versus public school. And yes, there are differences there. And maybe if I’m not connecting the dots, it made me understand when I have my kiddos now the differences of that. So I went to [appeal] school up until high school. And then a Catholic school. And then into college at Grandview. And I really didn’t know, you know, “What do you want to be when you grow up?” And I’m like, I have no idea. But again I knew that I had that part of me that wanted to help. And so I took a BA in Human Services. I would love to say that my professors were all like black and white. And it’s what you’re going to do when you get out of here. No, it wasn’t like that. He would tell stories about his world and experiences. And I wouldn’t understand why that had to do with the material in the book. But as I got older and began to understand, social work is not like that. It’s not like wrote down on a book. You may learn it but you’ve got to go outside the box, to live it.
Interviewer: A little messier. [laughter]
Diane: A little bit oh yeah. Okay. And then when you’re first learning the ropes of how to do that, I got my first- well, I was a nanny. Right before my work at The Boys and Girls Club, but as a nanny too. So that gave me the ability- small, to work with somebody and their family. And to bring the experiences that I had there. So I did that for a couple of years. And then I worked at one of the facilities here in town, as a youth service worker. I worked with offenders.
Interviewer: So you’ve really- from working with young people.
Diane: Yes. And main families for-
Interviewer: And families. You’re whole life, really.
Diane: Yeah. Right. And in the mix of that I worked at one of the nursing homes. I was a receptionist, but I still had to know what was happening on the floor. Making sure that they weren’t going to walk out the door. Beginning, you know, if one of the residents came into me and say, “Hey I really want to talk.” To be empathetic person to them. To feel them out to see if they needed anything at that time. Be able to be on call when the flood came, ’cause that was during the time when the flood of 1993 came through.
Diane: Yeah. And I couldn’t go home that night. And the bridge had shifted. So they asked me if I knew how- the staff there at the receptionist asked me if I knew how to do a six-phone- phone line. No, not at that time. But I had learned really quick how. And again the dots came together because I got a phone call from a- she used to be a telephone operator. And she was looking for a way to help. And she says I’m like you- just one second. Can she- yes, she can come. And so she was able to come and take care of that phone line. But if I didn’t answer that phone, at the time, we wouldn’t have that connection to the- yeah.
Interviewer: So you really have been helping people all along from the whole spectrum. Geriatric, youth offenders, families. Really everybody.
Diane: I did some volunteer stuff. I would do hospitals a little bit. I didn’t- I went for the training. And I didn’t really have to use it until, well, a friend of mine went. So I then, I was able to understand the world a little bit more. If I had gone in there cold, I wouldn’t have been able to feel what to do and how to respectfully walk in.
Interviewer: Absolutely. So yeah.
Diane: Let’s see, so my life was pretty much, yes, social work filled. Up until about 2003. We had been- I had gotten married. And he- he’s a jack of all trades. He was a fireman, ambulance driver. You name it and he’s done it, corrections and all that. He was somebody that your mom would go, “hmm.” But I was like, yes, I like him. And that’s all the way it go- this one’s going to be that way. And I just knew. But I had- we hadn’t gotten married right a way. It was we waited for 4 years. I wanted to finish college and I wanted him to figure out what he wanted to really do. And then go from there, yeah. So we got married and we were told that we wouldn’t be able to have babies.
Interviewer: Oh my, that’s hard.
Diane: Yeah. That is hard. And I know there’s a few of us out there who- when I say that, well yes. But been there done it. And it’s- it’s kind of hard to hear. Especially if you-
Interviewer: It has to be.
Diane: Yes. Especially if you wanted to have them. So we’re like well. And there’s that no. I’m like, well, no-no-no-no.
Interviewer: You don’t like no.
Diane: No. Well there’s no for a reason. You know is it going to hurt you, is it going to be something you can’t do yet. Okay. But if there’s like this, well- maybe. But I’m like researching. Because that’s what I do too, I’m a resource specialist. And I try to find those ways to do it. Now, in my particular world, it comes down to my faith. My spiritual direction. Well my- I’m Catholic so there’s a certain expect- well not expectation but procedures, I’m not sure. There’s a different word for that. But anyway, of how that comes about.
Diane: Yes. So we prayed about it a lot. And we followed the protocol of the church, basically. And still after being married 10 years it was- well, okay. It’s not time yet. Maybe it’s-
Diane: Yeah. And we’ll know. And then we sat down in church and it was during the Christmas season and we were talking about going and adopting. And I was pregnant, didn’t know it.
Interviewer: I hear that a lot. [laughter] I hear it all or people adopt, and then they get pregnant. That’s so interesting.
Diane: Yes. And my first child was born in 2005. And it was a long time, you know. But he finally came. And, I don’t know. My friend calls me on the phone and congratulates me. And she’s says like, “Are you going to do it again?” I’m like, “Yeah. Sure.” She just know that it was just the drugs. [laughter] No, no. But I was willing to do it again. I- like I say, I worked up until about, well it was 2006, actually. Because when my son Robert was born, he appeared to meet me know all this milestones. But then about 10 months I caught the cloud came over him.
Interviewer: That’s young. What happened?
Diane: He lost his verbals. He had already been speaking. He know mom and dad and all that. But his verbalization went away.
Diane: Yeah, you know. Do you know that you could say we had all of our shots as of that point, and there’s someone defends to go, well, you know, shots might have done it. Or maybe it was because he didn’t get enough oxygen. I mean, I don’t know. But he lost his sense of speech. He started to- when he was walking, he’d walked almost into things. Or all- he would see you but he would still walk into you. Things like that. And so again, being a social worker, had some of the experience, didn’t quite understand. There was something that was a little bit odd. Especially when he was watching a show, “Baby First TV”, and there was a bird. And he was flapping his arms. And I’m like, “Oh, that’s kind of cute.” But when the bird went away, he’s still flapping his arms. And I’m like, well that’s a little- that’s strange, okay? So I knew enough to say, how can you reach out- to say, “hey, what’s happening here.” So in this case, yes, I did call AEA. And they came out and they went through all their assessments and evaluations and they said behavioral stuff. And then I went, “Hmm, no.”
Diane: Yes. No, not autism. In fact one of their representative came out and tested him, it wasn’t autism. But they were about to determine it was all behavioral.
Interviewer: That’s interesting.
Diane: Yeah. But in my head, it was like, “No.” There is something more going on here. And that’s when I was also part of the Parents as presenters back then. Oh no, sorry. Parents as Teachers, yeah. And a very good friend of mine there- she said, “Diane, you know I’ve known you well enough to know that when your fussing about something, maybe that’s what’s- something odd is going on with him” yeah. And so she said, “You know- yes you have this evaluation, that’s fine. But do you think maybe you want to try another person, or entity or organization.” And I’m like, “Yeah. I do.” So she gave me the list. Which in this case I was familiar with giving list because I had also worked at Children’s Resource and Referral system for those who wanted to know about daycare.
Interviewer: I see, right.
Diane: Yeah. So again I was advocated for families and if you want to know where you could put your child or- I would be able to tell you. That I would be able to give you a list based on where you work in or your home environment. And you would have to go out take care of that. So it was comfortable for me to go, okay well here’s this list of. Let me make phone calls, and figure it out. Well I fell upon ChildServe.
Diane: Yeah. And they did their evaluations and they said sensory processing disorder. And I went, “What was that?” I had no idea. That big term for lots of issues. And I thought, “Oh no.” Okay now that- I mean it felt good to know there is a word but then what is it? How does it work? How is it going to affect Robert? How is it going to be for my family. All of those questions come up. And I didn’t at that time have an advocate in my corner to say let’s walk this together and figure things out. But I also knew that, that since I had a social worker hat on my head, that I could start doing that. And I also knew that I had people in the field that if I got stuck, okay why don’t ask them too. It was scary at that time. Because I still didn’t know what I was getting into. I didn’t know what questions to always ask. So there were times that the expert seemed more higher than me. But even that I began to fuss with that because I was like, “No, wait a minute. No. This is my child here.” And I’ve seen him get to this stage and I’m still not seeing what they’re seeing. So there- when we had conversations it was like, well are you- one, are you listening.
Interviewer: Because sometimes it doesn’t feel like it at all.
Diane: Right. Yeah. Right, you know. Two, am I seeing the same things that you’re seeing? Is there a middle ground that we could come together, go okay, let’s meet right here and figure things out. Or am I going to have to say to you, which is really hard, I don’t want to use your services. Because then you feel like you’ve made a mistake.
Diane: Okay? What you did, and your just advocating as they say, for your kid.
Interviewer: For your kid, right.
Diane: For your child. And making the best decision that you’re supposed to make which is sometimes hard to know even then.
Diane: Yeah. So I took that sensory processing word that I learned about Robert and I researched it. And the computer blew up of all of these different things about it and I’m like, “Wow” If you were to ask me then, are you swimming, drowning or whatever, noI was drowning because I had no idea what that meant, like I said.
Interviewer: Did the description to your reading, they seem to fit?
Diane: They fit, but it was just like okay, so how- is it going to go away? What you got to do? How long is this going to be? I remember one day, ’cause there’s my spiritual partner Melmi. We went in to therapy again for that day. And I came out just really like, “Hooh, how long is this going to be?” And for me, there was those handicap signs where a little bird had flew up on top. And then didn’t stay there. And it flew all the way to the top of the building and stood there. As if to say, “Diane, don’t look at the handicap. Go up higher. Go beyond it. It’s going to be okay. You might not understand it. It- he might not be here that long. But you need to keep going higher, because you’re going to have to go on this path and you’re going to help him get past that label. That sign. And it- and it work out like that. He graduated, he found his voice. He did. There were many times when I stood- if other people know about ChildServe they have a viewing window. And I wrote down every single word that he was doing. The social workers would come behind me, “What are you doing?” Yeah that’s right you are.
Interviewer: So he did get his voice back? He learned to speak?
Diane: He got his voice back. Yeah.
Interviewer: That’s wonderful.
Diane: He learned a little bit about boundaries although he was still you know mopping into things. I put him into soccer for the first time with sensory processing disorder. And that was- learning lesson 101, it’s okay. Bottom line. However, when you’re out there and the kiddos are running around and your kiddo is kind of running into or through them, and you have other parents who do not know what’s going on, and they’re not coming to you to ask, or they’re going to my Mom to say, “What’s going on?”, or the coaches, “Why is she out there?” If they simply would have said, “Come here.” I would have simply said well, the coach has said I could be out there because my child deals with this. And I want to be able to be there to help him through this situation I put him in, one. And I don’t want him going through your child and hurting them. Oh, okay. Advocacy.
Interviewer: Right. Right.
Diane: Right. And protection.
Interviewer: It never ends, right? It’s everywhere on the soccer fields, you have to be the advocate.
Diane: Right. And so I learned what he could and could not do. I learned as he got older what situations wouldn’t fit for him. I learned even when you were talking to a possible person or organization about, “Hey, what do you think?” Would probably fit in your world and they would go, “Hmm, not so much?” Without even an interview or a situation where they go, “Let’s try that.”
Diane: Yeah. So even that began to change my perspective of how I was going to approach things. Which now I do, I still find things for Robert to do. He just turned 13. That’s a whole another field but that’s all for today. But I still, if I call it say, I cold call and say, “Hey, I’m thinking about bringing my child here. Okay, so what is it that you guys do? How many kiddos do you have? This is all about Robert. This is what he is all about. What do you think? And I now get, “You know what, let’s bring him in. Let’s feel it out.” you know and if it doesn’t work I said, “Yes. That’s exactly right. I want to know straight right then, it’s fine.”
Interviewer: They give him the chance.
Diane: Give him the chance to show what he can do, yeah.
Interviewer: Absolutely. That’s great.
Diane: Yes. I did have a middle child, Michael. He’s all boy. He doesn’t have any health concerns. He’s very perceptive. He’s a mini me. Loves music, loves to dance, artistic. He also, and I try not to put him in that position and he kind of goes there, he care takes.
Interviewer: Talk about that ’cause the whole sibling issue is so fraught. How to navigate and how for other kids deal with it as well. So talk about that a bit.
Diane: Well, when I was going through college, we talked about siblings and how they are not on the front line. They’re in the middle. They’re picking up things, they’re you know whether or not do I want to be their brother, do I want to be their sister, do I want to deal with this. I have emotions too. I mean, lost here. Where do I fit.
Diane: Yeah. And when he was younger, Robert- he would act out. Unfortunately he would act out on his brother. So I have to, you know, “Robert, we can’t do that because that’s hurtful to him.” And then after I tend to Michael and try to explain to him, “He’s not hurting you because, you know. He’s hurting you because of this issue.” And so it became kind of clouded. Of course Michael had to grow into that sadly, unfortunately. And then fortunately, because now he can understand on some level that it’s not Robert that he sees. And there is a difference if they get in to the sibling rivalry thing. But yes, this is a sibling rivalry thing. It’s not the issue of Robert. It’s not the sensory part of Robert versus that all that is. And I can’t respond a different way.
Interviewer: That’s always the case, right? Because when you have a child with any kind of disability or difference, they’re still kids. And they’re still going to push limits and so on that may have nothing to do with the disability or difference. And the same thing with siblings. They’re still going to be sibling rivalry. So that- but it’s hard to just for us to tease out, it must be hard for sibling to tease out too.
Diane: And he would come to me a couple of times and say, “Mom, how come I don’t have an issue.” Where’s- okay so with the three and- there’s four kiddos in my life. But the three kid as I say, which is whole another thing too, “Where’s my check?” “Where’s my illness.” Well Michael- and so we had to explain and help him to understand that, well that’s not where God put him, okay.
Interviewer: Right. Right.
Diane: That’s Michael, that’s Michael. And okay, Michael might have a few differences that he was- when he was going to school. “Mom, they’re teasing me about that.” Well Michael let’s use it this way. They’re seeing a difference. I don’t see it. Mom and dad don’t see it. But can you with- so when we got past all of that, you know the tears and the understanding and try to talk him through that. Now Michael let’s look at that sibling to- Robert. Okay, Robert’s going to have this as long as he has this. And it will be a difference for the rest of his life. And other people are going to be seeing that and they are not going to understand. Similar, because you don’t understand why they’re picking on you.
Diane: So I utilize that.
Interviewer: So they’re all lessons – life lessons.
Diane: Yeah, they’re all life lessons.
Diane: So also I, you know in college, you learn about how you take your kiddo, you can give him to his own group, his own situation. So mom and dad, we spend time each with the child or in this case I put Michael into sib shop. It’s that–
Interviewer: That’s great, you have. Can you talk with it ’cause not everyone knows what that is–
Interviewer: Or has something like that.
Diane: Sib Shop is what the rest but connection or least if it’s a hour, where the kiddos who do not deal with special health needs go and be with their peers and they can talk and they can do games, crafts, whatever It just gonna have a day by themselves.
Interviewer: But they get to shine?
Diane: Yeah, they get the shine and then know there’s a couple of churches organizations near too. They’re outside the rest but they have, they have those peer groups too, where Michael can just go and be with his peers and it’s you know it, it’s particular cases religious base but it doesn’t have to be.
Interviewer: Something school could do.
Interviewer: Counselors could sit into groups, recreational centers could, churches can, anyone listening out there great kind of program to develop.
Diane: Please do because you know, we don’t a lot of them in Des Moines proper – it seems there are those out there but yeah so the rural areas lot of–
Interviewer: It’s even harder.
Diane: It’s even harder to find those. Yeah.
Interviewer: And that’s the kind of program that’s not that hard to develop, It’s getting the kids together.
Diane: Yeah, right and find out what they’re likes and what they like to do and then just sitting down and having a discussion even. “Hi what’s going on” and let them tell you and hang back and–
Interviewer: And let them be kids.
Diane: Yeah, let them be kids.
Diane: I don’t know so, he’s now a middle schooler, so in his world, he’s feeling out the difference of that– you know, what does it mean to be a middle schooler? Okay, he’s just coming out from kindergarten to fifth grade and kinda knew my way and now, what does it mean to be a middle schooler get ready to get into high school. He’s kinda worried about that and I also set him up with the counselor too or the guidance counselor too, so he’s had that chance to be able to vents. You know he can vent to me but you know, he don’t always want to. that’s over, that’s fine.
Interviewer: You need another people.
Interviewer: Specially they’re adults
Diane: Another mentor. Yeah.
Interviewer: So in this journey like what kind of things have been barriers to getting your son the help he needs to has the sensory processing disorder or the siblings, either one, what are the barriers or difficulties you encounter?
Diane: Well, initially with Robert, the barriers were those that were call quote and quote the experts.
Interviewer: that’s funny, let’s talk about that. What do you–
Diane: Yeah, well, to flush it out a little bit more when you’re a social worker by profession and let’s say home mom by choice, for me, I work two hats and when you go to the table at school and your doing the IEP for your kiddo for the first time and yes, I had that in college and kinda dismissed it like I don’t want that, I don’t even know them, I’m not gonna be using them, well, of course I am.
Interviewer: [laughter] You never know what you need.
Diane: There’s another that. [laughter] Work, clock work. We should table the IEP for the first time and your hearing the language that you haven’t heard before or your having else experts sit in front of you when they’re having a conversation between each other and they’re doing there scheduling and they’re doing their meetings and you haven’t been behind the organization for a long time so you don’t remember scheduling a meetings. And you ask the question “What does this mean?”. It’s almost as if you’ve walked into another planet. Like “what do you mean, what does this mean?”. “Don’t you understand that one?”. No and it’s not written in a language of just here it is spelled out with ABC or your child’s gonna do this and this and this.
Interviewer: Oh no, I mean it’s a whole different world of like I called it sometimes alphabet soup, all the acronyms if your not in that sphere. You don’t know what they mean and it can be very confusing.
Diane: Yeah. Yeah and so the first, I would say the first five years. Yeah, with Robert’s school because now he’s middle or seventh grade. I found myself reaching out to ask resource center.
Diane: Yeah and there they have parent educators and navigators and they come and sit with you and that way you’re not feeling like your by yourself. But you can reach of them and “What is this again?” or you know you could actually say you know, “I kinda leave the room ’cause I’m getting overwhelmed” And it’s okay and they’re not gonna go “Okay you know what, it’s okay for you to do that” versus having to check yourself all the time going “What am I suppose to do here?” yeah. I mean we work so hard teaching our kiddos what were suppose to do but as parents, you know, dealing with IEP and everything else with special health needs, we don’t.
Interviewer: Yeah I mean. Let’s talk about that for a minute because IEP meetings or Individualize Education Plan meetings when your child’s special at are very stressful for parents and I think part of it is just what you said they’re very emotional for us. It’s not only like difficult to figure out what the child needs and be part of the IEP team and everyone struggling figuring out what ‘s the best thing is, that’s one thing, but when it’s your own kid. It’s the love of your life suffering and you want to figure out how to change that and that’s painful, so you can’t just take off those emotions conveniently and then figure it out. [laughter]
Interviewer: So it is overwhelming.
Diane: Yeah it is. I mean there, we’ve, there have been times where my husband and I attended the meetings and just because I felt those barriers come up again and knew. I wasn’t, I wasn’t being hurt or wasn’t being explained of the matter that was timely because they’re all be looking and gonna watch and “you know, I’ve got a meeting to go to” and I like “Wow really?, No, No”. Whenever we have IEP meeting we need to sit down and go you know what it’s gonna take as long as it takes. One and then two, it’s gonna come you know, It’s gonna have to be written out but you gotta understand the language and it may you know, it may just be that we have that come back in other time and regroup and figure out ’til we get exactly what we want and that’s just okay.
Diane: Yeah, that’s okay. So, there were several meetings that were like that. I can say going forward now I had I also have twins– that’s fun. [laughter]
Interviewer: you’ve have nothing on your plate– [laughter]
Diane: Right, yeah and chocolate is my dessert the other plate. [laughter] you know. So I have twins and they’re boys as well and they just started kindergarten and another thing that I could throw in there before I get to that is it’s the environment, when you put your child in the right hands of the right school and you know it and you can walk away knowing that even though there’s gonna be a melt down or you’ve going to get called back up, it’s gonna be okay because that team is right behind you too as you go walk back into that school because they care. Well, in Robert’s situation with the twins, for middle school and I don’t have the problem saying where, Hyatt, that school for Robert and those teachers, night and day, they love him and they just come together and they make everything spelled out and it’s I don’t know it was just really good to know they are behind him and he went from having all this behaviors and acting out to “Hi, How are you doing?” you know and , “I love You they love me back” and it’s just you could see he really wants to go and he shine and it’s working out. So when it comes to the twins, to have their first IEP and their violations and everything, I didn’t have an Ask Resource person next to me. I didn’t have that advocate next to me because I’ve had all these years of Robert teaching me basically. His sensory issues, the IEP and all of that, so I was able to sit down around the table and go “Oh, My name is Dianne, a social worker by profession, I sit home by choice” and were talking about the twins, just as easy as that and then go “what are we gonna do today ladies and gentlemen?”.
Interviewer: So you really built confidence in your experience?
Interviewer: So experience and wisdom, develop into a confidence?
Diane: Yeah, it was another persona even and when they in the table ask me, “What is that sensory processing disorder?”. Well, I took them in a journey. I took them all like maybe 5 or 6 in the room, darkened the room and said “Okay, we’re going to learn what that is together” and by the time move out, 10 minutes into they were like ” Wooh” and I’m like “Yup, imagine that having all that issue with all your senses being bombarded for those you who don’t know sensory processing is, you whole entire senses are bombarded and you can’t really express what it is you really want to say and you’re kinda stuck” and then maybe have a conversation with somebody and you started acting out because as you know all our senses got involve our formation in it but we can’t, we can’t, we can’t have it behaviorally and they’re going to tell you you’re not gonna do that and you’re like all anxious. Well, that’s Robert, times 10.
Interviewer: So one thing I’m hearing, I think is very important for parents to hear especially when you are the very beginning of the journey. Is that you do develop a confidence and that your ability to advocate grows? Your advocacy grows and it will serve you in the future. No matter what that is, sometimes it’s even just not related to disabilities advocating for ourselves and like you learn how to get that confidence and I think that’s very important.
Dianne: Yeah and then you, you’ve got the question “Where do we start at?” well, hopefully, hopefully there will be that advocate to say “You know what, come on mom and dad, I will show you, I will show you where, but again it’s up to you, to take the information and fill it out.” And not having have to make that decision right to that day. They don’t know what they’re doing when they first learn that their kiddo have special help needs.
Interviewer: Very emotional–
Interviewer: That’s very difficult.
Diane:Yeah, because you learn, I think we all had, I think it’s fair to say we all deal with because we got this baby, 10 toes, 10 whatever, you know “Ye hey” and then, and then but mom and dad were dealing with this, okay, so there’s a little bit of grief there. It’s a little bit of a “What does that mean?” and a little bit of anxious and how is that gonna work? And I’m hoping, I’m hoping for everybody that they be that person to go “Okay, breath, breath, the first thing you got to do just it will be okay, we’ll work it through” you may not have the same land that you wanted it to be. It’s not Holland but it will be Illinois or maybe–
Interviewer: Exactly. And so what–, in your journey, was there anything in particular that just when you mention this great school so that would be one example?
Interviewer: Is there anything else you can think of that just like “That saved the day”, like just that one–
Diane: The love of the moment–
Interviewer: That policy, whatever that makes that wow or something that you ran into that just really helped your son.
Interviewer: You were just like “Oh, I just hope that’s there for everyone else in the future ’cause it made such difference for us”.
Diane: No, I just–. Not exactly a policy or–. Just been able to really get that confidence and saying “Hey, I need to advocate here, I need my voice to get heard” Being able to just take that step back and write it all out, okay. Just that, just been able to have them say “They”, it sounds funny but they and us, you know what–
Interviewer: It feels that way, sometimes it really does.
Diane: It feels that way, yeah. Mom and dad it’s okay. we don’t have to make a decision today. If you could just say that, yeah or you know what, let’s table this and tell “Is that okay with you?” and make it back on them and feel them out versus having them say “Well, you know, we know what’s best” Yeah. No. Not all the time and it’s okay for them to go “Oh, you know what, I don’t know what’s best.” Your’re mom and dad and we’re here to help you. Yeah.
Interviewer: Yeah. So really. So the parents here are part of the team as oppose to, which is how it suppose dto be. We are a part of the IEP team for instance, but that’s really an important thing, so one thing that really works is when, whether it’s a team them IEP team or the medical team or whatever it is, to really truthfully includes the parents as an equal part of that team.
Diane: Yes. Yes. and that’s what I’m trying to say is, once you understand that you’re all there, you know, you each have your role and that’s important. The mom and dad and this was said to me “Mom and dad are team leaders”
Interviewer: That’s a good point.
Diane: Because they’re bringing their child to you, the service. Okay, and yes you’ve all gone to your trainings and you know whatever that maybe to get you to the table. Kudos to you and everything you do. Okay but, but period, not a but, but period, we’re bringing you our child and staying here. Okay. We don’t have that experience in you know, developmental or issue or milestone or whatever that might be. We might, because we might be a nurse, then you have second hat, hat on their head. But if we don’t we’re looking to you to say “What’s the next step?, We’ve got in here, Okay, what’s next? Feel won’t help us fill in that blank. Don’t make the answer for us, but just “Give us that list, that options”.
Interviewer: Alright, so this has been a long journey and as we always say in all this interview is you know what to change in this moment to moment but where are you right now? Do you feel like you’re swimming, treading water, drowning, what do you feel right now?
Diane: Well, it’s very, it’s kind of a hard question, especially if it’s day to day.
Diane: Yeah. This morning I feel like I was drowning a little bit only because well, because I had 4 kiddos and then trying to get them all set ready for school and they all like “I don’t want to”. They’re all boys though but– [laughter]
Interviewer: And school just started you should stay.
Diane: And school just starting…
Interviewer: It’s a very challenging times in any of us. Yeah.
Diane: Yeah it is and of course the hours are different and–
Interviewer: Were all mourning summers [laughter]
Diane: Yeah. Yeah, and so it’s just trying to get them back in that routine and then working with each person who you know, each child is an individual anyway, even if they are twins. Get on board and get out the door. And then you can breathe when every bodies out of the door and there places and you feel like “Yup, they’ve all got the experts around them, the school people around them, they’re fine” and you know my spiritual part comes up to me ’cause I read this a couple of days ago, “Dianne, God saying hi there remember”, “I got them, they’ll be okay”, “You need to go take care of yourself and, and do whatever it is you need to get done before you deal with them again and they say ‘Hi mom, how you doing?’ you know, okay” [laughter]
Interviewer: Take that window while your have it, right?
Dianne: A little bit, just a couple of hours you know. Yeah.
Interviewer: Speaking of which, how do you take care of yourself? or how do you survive if- or survival techniques whatever is applicable?
Diane: Okay, right now, I will tell you when I drop off the kids for the first time this first day of school. My mentor, one of my mentors and she’s not longer with us she’s in another side of heaven, she said to me “Dianne” she said “Dianne, when you drop off your last kiddo, you spend that day doing exactly what you wanna do” because you know there’s, there’s, there’s we work you know, we go to school, we got a job, you have an identity like that and then when you choose or situations happen when you’re no longer working and you become a stay home mom because you choose to do there that’s going to works out, you become that person. Mom, hat and banker and all things of mom who would in house were in house and wife and all of that.
Interviewer: CEO, I mean you gonna love…
Interviewer: Mom does a lot [laughter]
Diane: And you know, we all seen that picture where was like “Okay, let’s add it up” and we don’t get that pay check.
Diane: Okay and then we say women, women need to work if you need to but that’s totally fine, that’s your thing, that’s your passion you know. Yet, if your at home, you know, we have to find our perks. What is it that were stayinh home for? You know, What is it that we wanna get pay for and all of that. So, I have been fastened for the last maybe a year “Okay Dianne, what are you gonna do when you grow up?” and your kiddos were at school. I’ve got to celebrate though [laughter] and I did and like ” Oh my gosh that and it’s kinda funny” you know but then I went back to “Okay, what does Dianne wanna do?” Well, Dianne liked to read, Dianne did genealogy I did even was having my kiddos but you know, they’re not grown but I was still find time to do that but I do my Genealogy. I you know like watch TV but it’s for historical reasons and stuff, I get on my computer and I look for those resources you know again if you cannot find it Des Moines proper, I gonna find one outside of Des Moines proper and I might want to make a cold call say “Listen up people out there and if I get a cold call from Dianne I might wanna bring your program here”. You know are you thinking about that? Can you make something similar here? because it’s not here. Then I’m gonna kinda bust your bubble and get you out of your comfortable zone and bring you here. Yeah. Trying to, well, you know, social card get my CEU’s, so I wanna get my trainings and learn more about it. Yeah, just, just do that.
Interviewer: Right. So I can see in your face, our listeners can’t see your face but you just light up. [laughter]
Interviewer: So talking about. So obviously this energizes you, it nourishes you.
Diane: Yeah, that and if you put a person in front of me I was like “You know what, I have this dream” and I’m like really? tell me about it. [laughter] Tell me about your dream please you know and I am gonna be like “Wow, I wanna be someone so” and I’m like “That’s great, why are you not doing it?” then like “I don’t know, No really?”, “Where do you have to do in order to get there?” I don’t know. So I’m your girl I’m your like, “let’s research that.”
Interviewer: That’s awesome. That’s awesome
Diane: Yeah, there’s a couple of things I gonna doing to. I’m gonna be going to my mother-in-laws. Nursing home and I talk to the Acuity Director and we’re going to be putting together a genealogy type of, what do we call, lesson or a–
Interviewer: How fun– that would be special.
Diane: Description of them you know and so in there and if they’re dealing with dementia a little bit, hopefully that will push a way a little bit and break open those memories. Okay.
Interviewer: Do you say things like that really help–
Diane: Yeah, so I had the inspiration so was like called through and called, they said “Okay, we’ll figure that out”. So I’m suppose meeting with them some time.
Interviewer: Will that would be nice–
Diane: And then I gonna be making a little newsprint about Alice you know, you could put them out of their door little bio–
Interviewer: Nice. that would be so nice.
Diane: Yeah, so that’s one thing I’m doing and then I also as I told you earlier, had a interview couple of hours for the genealogy place here in the morning or actually in the must in morning yeah that’s one. And I gonna be able to help families come together and find their family members and–
Interviewer: That’s exciting.
Diane: It is. I always have that drive to do it and I’ve been doing my husband side, his family. That’s so much fun, because this family on his grandmother’s side do not know that they had that relatives.
Interviewer: So discovering new people–
Diane: Yeah and then you know involved with “What” and so they found out that there’s like 14 siblings of this of the great grandparents–
Diane: So each one of them has a descendant of two or three and then you find them connecting together and like it’s just so much fun to watch ’cause they’re like “Look at you. You’re my kid and you look a lot like this” and yeah.
Interviewer: So we always end these interviews with the same question, anyone who been around has a funny story [laughter] but is there a moment that you think that was laughable moment or something that just makes you smile and you look back at it?
Diane: Yeah, well, there’s a couple of them so I share that with, I give each one there’d do, well, when we get ready for have for hours, I mean the hospitals and I’m so tight and just really tense ’cause I’ve never done this before and my brother in law comes in boom the door and you know he goes “Girl, you haven’t have that baby yet?” [laughter] Just started laughing and like no man.
Interviewer: Working on it. [laughter]
Diane: Yeah, he was “get to pushing, get to pushing” and I just broke up laughing because I never expected him to even come in there and do that you know, he wasn’t the type like that.
Interviewer: He relieve the tension. Yeah.
Diane: He really relieve the tension, well and it was fun. Yeah, with my son Michael, he always, I mean he just does it you know he sees me hanging out and he also come over to me like “What you doing mom?” “What you doing mom?” Let me tell you all about it mom. He has he’s learning how to do voices. So yeah, he’s a comedian tap dancer and he will come in sliding in like Fred Astair – sliding back out so I’m always you know–
Interviewer: There always making you…
Diane: Just yeah. yeah. and the twins, for those of you who have twins or triplets you just know that any day is gonna be something…
Interviewer: something funny?
Diane: Funny yeah, but just recently I took the kids up to the school and told their teachers. Well, my oldest twin, Junior, “Okay guys, the doors to the backyard or the playground is right here” and his classroom is right there so you might wanna make sure he doesn’t go out that. “Okay, I make sure he doesn’t mam”, “Okay”, so later that afternoon, “Ma’am?” “Yeah?” “Well, one of them got out”, “Well, was it junior?” “No, it was the other one” he left the building and I didn’t prepare those teachers for him. It wasn’t suppose to be him [laughter] it was… like “Oh no, I’m sorry about that”. Yeah so–
Interviewer: There’s always something.
Diane: There’s always something in my house. I got the four sons and my husband and–
Interviewer: That’s enough to keep anyone busy.
Interviewer: Well, Thank you so much for sharing your story with us.
