Malinda and Chad are the hosts of Autism Mastermind, a podcast that provides practical tips for parenting a kiddo with autism from diagnosis to guardianship. In this eSpecial Needs Podcast episode from June 2020, we discuss guiding your child through various challenges as he or she grows up.
Automatically generated transcript below (please excuse typos and grammar errors)
KB:
Welcome back to the eSpecial Needs Podcast. I'm your host, Katherine Blanner. In season two of the eSpecial Needs Podcast, we'll be addressing care for the whole person, focusing on early intervention and school based care resources. We've noticed that it can be done difficult to find relevant and researched information for all stages of life, so our next season is focused on that. Here at eSpecial Needs, we want you to be able to not only get the products you need for your loved ones, but also help answer some of the questions that you might have along the way. Whether you're a parent, teacher, caregiver, therapist, or sibling, we want you to be able to help you get the information that you need while you're on the go.
Today on the eSpecial Needs Podcast, our guest is Melinda Cook. Melinda and her husband Chad started a podcast called Autism Mastermind to bring the resources and support to the autism community while raising their daughter Paige. In this episode, Melinda gives the audience insights and tips for building a community of parents, helps us understand attaining the support therapies and resources that helped her daughter drive, and gives us ideas for looking towards the future. Without further Ado, please welcome Melinda Cook
MC:
Hi, everyone. Thanks so much, Catherine, for having me on today. I am Melinda Dalton Cook, and my husband and I Chad. We have a podcast titled Autism Mastermind where we started off by wanting to document our daughter's life as she transitioned into adulthood and share with others what goes on, what happens when your child turns 18.
Then we started interviewing others that are familiar with autism and work in the field or are parents themselves. And we're all really Autism Masterminds because we know so much about the subject. And I know I learned the most from other parents, especially moms.
KB:
So you created the podcast to kind of like, be a resource for other moms as well, right?
MC: Other parents, I guess it's not just moms. Chad does it with me. It's so lovely. Yeah. It's a great podcast. I've been listening to it. I do not have any kids, but I do appreciate it. And it helps me honestly as somebody that works in the field of special needs and tries to help manufacture resources for special needs families, it helps me gain an actual valuable perspective in a way that I don't think a lot of other things are so big appreciator of your podcast.
KB: Thank you so much. Yeah, anytime. So one of the things that I also had a question on was it used to be called Sans the Sugarcoat. Right? Right. What went behind the name change and what transitioned it to Autism Mastermind?
MC: Well, originally it was called Sansa Sugar Coat because I like to tell people how it is without sugarcoating things. And it started off as just a regular blog that I was doing and it had nothing. It had some to do with autism and also other things in my personal life. So I started out as sans the sugar coat. And I said to Chad one day, hey, I'm going to start a podcast. And he thought I was crazy. And I did all the research and we just chatted about Paige. It was the same sort of format. We chatted about how we were going to transition our daughter into adulthood. All the ins and outs that go with it, how to provide for her future, what her future is going to look like, whether it's buying a house or having her live somewhere else. Not with us just providing everything, the legal aspects of everything. So we started it out with that.
And then one night I was telling Chad, you know what? There's not a group of people talking about these things that I'm having a hard time finding information about transition and housing and jobs and workability and nobody's talking about them. I want to get together a group of like minded parents and just chat about everything that's going on with our children that are either teens or about to become adults. Because no one's talking about this. And I didn't want to have it affiliated with any other organization. I do love another organization, but I wanted it to be genuine and parents so comfortable coming and not having to have just one subject. It could be an open table format. So I said to chat, you know what? We are all autism masterminds.
And I said, you know what? I'm going to start a group. I'm going to put out a Facebook meet invite and see what happens. So I sent out a meet invite. I Typed up a short little description saying, hey, let's meet. Let's talk about our kids, their future, the present, what we're doing now, and help one another just do everything in their lives. Because I learned so much from you guys, the parents. So I had a meeting. 37 people showed up. I was blown away by the Richard. Wow. Yeah.
And I made a private Facebook group. We live in San Diego, California. And I made a private Facebook group. And we all sit around and chat virtually and we ask questions. Right now I'm dealing with SSI for page and I ask a question, and someone else has been through it. So it's a little bit easier now to bounce questions off of parents that have already done something. Sorry, can I ask a question? What is SSI? Oh, so it's the security. Okay. Good to do. Yeah.
It's like unemployment, but for a person with a disability, since they won't have a job, they can collect basically unemployment. Okay. Since they won't be employed. So it's just things like that. And conservatorship guardianship, it's called different things in different places where we reserve pages rights. And I had spoke to others about that and how that works. And I just wanted to form this group and help others. So I decided after that. That Sansa Sugarcoat really wasn't a great title.
And I wanted to broaden it to Autism Mastermind and have Chad and I talk about our life experience and also other people come on and talk about either experiences or their profession. That's incredible. I think that fits really well. What a very seamless transition. It was basically the same. But now we have our group, which I love and everybody, especially right now, in these crazy quarantine times, we are encouraging one another and helping one another out with different ideas and things because it's really hard, especially it's really hard for everybody, but especially with our kids on the spectrum, it's extremely difficult.
KB: Yeah. I can only imagine that is actually one thing that I do want to talk about in depth, but we'll get to that later, if that's okay. So I kind of want you to take me through your life with page, like, from diagnosis until now, just like a spark notes version.
MC: Sure. She was born super cute. And they say that once you have your child, you just fall immediately in love, which I did. And I never really thought about children. And Chad and I just decided, hey, let's have a kid. So we did. And about 27 months old, we started to notice Paige wasn't speaking. She wasn't doing things that other neurotypical children were doing at her age. So we went and had her evaluated. And long story short, it took a while, and they gave her a diagnosis of autism. Actually, it was PDDNOS at first.
But then I asked other parents, what does that mean? And they said, oh, you want to get the autism diagnosis so you can get all your therapy started. So we started page out at about 29 months with therapy. And we've done every sort of therapy there is known to man on this planet. And we have been successful with some and then not so successful with others. But I think when she turned three, we transitioned into the school setting, and that's been difficult. We've had difficult years with that, as I'm sure a lot of parents with kids on the spectrum have just finding the right placements and finding a good fit for your child, which is, you know, pages constantly changing.
Her needs are constantly changing. And to top it all off, she has anaphylactic food allergies, which is a bummer. So she not only didn't eat much, but she was allergic to everything. So she would eat the Brown food diet, we called it. She would have toaster waffles or bacon every day for years.
We lived in another part of California, and I'm trying to remember all the details, and we decided that the school system wasn't great where we were. So that's when we moved to San Diego, the page is a little bit over three years old, and we've been in San Diego ever since. And we've been navigating through elementary and middle school. And now high school Page has had speech therapy and occupational therapy. She's very good at fine motor and gross motor. She's still limited verbally. She has some words, but she's not conversational. She can tell you who wants to needs. She also has a device on her app on her iPad that she uses.
And now she is in a life skills class. So that is a non diploma bound class. So basically they teach her life skills. They go in the community. She shops for her own groceries for her lunch. She makes her lunch at school. They teach her different types of functional money, math. They teach her how to be independent, more independent by doing tasks like laundry or vacuuming or sleeping and household chores, basically, and just being out in the community and learning how to get on a train or on a bus. She'll never be independent with those things. She'll always need somebody with her, but they're navigating that with her to help her transition into the rest of her life.
KB: That's amazing. And have you seen her kind of become like, how is she adjusted to that life skills class?
MC: Yeah, she really likes it because she's not an academic type kid. She loves doing academics. She loves reading, and she has a hard time with writing, but she likes to type. We have a couple of reading programs that we do online, and she just loves that learning, engaging aspect of it. Does she retain all the information? Not really. She needs to be rethought things often until they can stick. So I don't think she's able to read independently, but she can do some of these basic reading things online.
KB: So backing up a little bit, you mentioned diagnosis. And I know one thing that a lot of special needs, especially autism parents of girls have difficulty with, is getting a diagnosis of autism for females. So did you find that difficult or how did that process go?
MC: No, not really. The developmental pediatrician that we saw was female, and she said certain things and I didn't really understand the meaning behind it. But when we did go through the process, it was weird because there wasn't any girls there. But I didn't know at the time that it was like a boy girl ratio. I didn't understand they call it in the weeds. I still was trying to climb out and just grasp autism. I didn't even think about the numbers at the time. And now over the years, pages, only girl in the classroom, only girl in our peer groups. So she's always been around boys or males her whole life until recently.
Now I have several friends that have girls and we talk about it all the time. And they did not have a hard time getting a diagnosis, especially at the level pages. I think it might be a little bit difficult if you had a girl that would say more verbal. I think it might be a little bit more difficult, but I can't speak for that parent, but I think that for me, it didn't really matter change anything. All right. So let's kind of talk about how you've empowered Paige throughout her life. So what's been an empowering thing you've done and how did you get there? Let me see. Well, I started the Autism Mastermind group for sure, so that's helping her out.
I try to empower Page every day by just giving her feedback on things that she does. We do our words of affirmation every day. I tell her that she's smart and she's courageous and that she can do anything that she wants in her lifetime and that she can do whatever she wants. And I will help her get to that point to the best of my ability, or I will find somebody that can help her get to that point. So I try to encourage her daily to do things. And it's all about just like right now, it's all about having a positive attitude with what you're given. So I think that if you do have a positive attitude when you're around somebody, then they will vibe off of that positive attitude. And I think Paige does that around chat. And I agree. Wow, that's beautiful. Definitely.
Because I feel like kids are very perceptive to attitude, especially. And they hear everything, even our kids that are nonverbal or pre verbal, they still hear what you're saying and they understand Paige. She has so much receptive information up in her head that will someday come out. And she surprises you all the time with things that she'll say or do or remember. And I tell everybody, don't say things negatively in front of Page about her because she does understand what you're saying.
KB: Yeah. Let's talk about challenges now. So what's the challenge you had to overcome and how did you do it?
MC: Let's see. Many over the years, mostly being educated about autism, Navigating, all these therapies all the acronyms. Yes, there are so many acronyms. The funny part now when kids have the acronyms for things, I'm always trying to figure them out, just like trying to figure and you don't want to ask. But now I just ask, what does that mean? You know, the acronym, but you really don't even know. Like Aba, you don't really know applied behavioral. It's like you don't remember what it's called. You just say ABA, you just know what it is. Yeah. Mostly being educated about things, especially the school system, that was really hard to figure out and how to really do my research and figure out things for myself and ask questions.
I always say that I don't like to be the smartest person in the room because I want to learn from others and I want to speak up and ask questions instead of being timid and shy and not getting or not advocating for Page, especially for parents and new parents. I always say to them. You know, your IP team is a team and you are a part of that team. So don't let anybody do anything or say anything that you feel uncomfortable with. If you get that gut feeling, then you need to speak up and say something because I've been there and I've had those gut feelings and I let them slide. And then it ended up being not a good fit for things.
So I always say, just try to really do your research, especially like hire people because they're coming into your home when your child is younger. Make sure that you vibe with them, that you are comfortable with them, ask questions. You can always change that person or change that program. So I need many years of challenges that I've overcome doing those types of things. And I've learned from past mistakes that I've made.
KB:
You talk a bit in there about pages schooling, particularly. So how did you get that nailed down if you feel comfortable?
MC:
Well, let's put it this way. She started out in another county, which wasn't a good fit. Then we came to San Diego and there was a few schools that were not a good fit. We ended up having a teacher that was not so great in second grade. And I home schooled page for a while, which I am not a teacher. I found out I am more of a parent than a teacher. And kudos to all these teachers, especially right now, because it is hard. It is hard work being a teacher and also being a parent. So I found a school.
I had to hire an advocate, and I found a school. As I'm going through this homeschooling with her and I decided I can't do this anymore. I want her to be in a classroom and with other students. And I found a school. It went okay for about a year. And then behavior started happening and this was a bigger school. So it was a regular, just a public school with a special day class. The teacher wasn't very giving and she liked to run her classroom the way she liked to run her classroom, which is fine. And none of Paige's goals were getting met.
We did an episode on schools, and you can go and listen. I go into detail about what happened at these schools, and after that, I decided that I need to really hire some powerful people to help me get paid into a placement where she'll thrive. So I hired an advocate, a lawyer, and I started looking at other placements around us and we settled on the school that she's at now. And she's been there for seven years. And it's a nonpublic school. So NPS for those who want an acronym.
She started out in their elementary level class, moved to the middle level class, and now she's in their practical skills, they call it. So it's a life skills classroom. And she will be there until she's 22 and she's 18 now. So she's been there for seven years. So she has about four or five more years to go that she'll be there. So have you guys attained legal guardianship? So a note for anybody that's listening as soon as your child turned 17, depending on your state, it takes a while. So it took us about nine or ten months to go through the whole process.
We hired an attorney because I don't know the legal system and I didn't want to do anything wrong or have to do anything over. So Chad and I hired an attorney and we just went through the process. We went to court in January. So January 30, we went to court and the judge granted us conservatorship some places. It's called guardianship over pages rights. And there's seven different rights that we have now, like medical and money in relationship. And there's a couple of other ones that I can't think of off the top of my head. They're all legal, but she is now conserved.
The only problem is the courts are closed. So our lawyer sent in paperwork, but it is pending. So as soon as the judge already signed off. So it's just a matter of stamping a piece of paper, I'm sure, and then getting something legal in the mail that in case we need it at any sort of hospital or anything throughout her life. We have that piece of paper, so it is complete, but we don't have that little piece of paper yet.
KB: So for parents who are kind of new to this, why is it smart to attain legal guardianship of your kiddo?
MC: I believe it is for Paige's case because it's a limited conservatorship, so she can retain those rights back at any time. Some parents, their kids are good with money so they can have the right to their own income and their own job or the right to marry whoever they would like. For us, it's a safety reason. We don't want anybody to take advantage of paid physically, mentally, financially, and have something go wrong and have her say, for example, something happens and she goes to the hospital and we would not have rights over her since she's 18. So the doctor would have rights and they would make the decision on the procedures that page would get at the hospital. But since we have the conservatorship, we make those rights.
So basically for new parents. It is the same rights that you have over them when they're younger, before they're 18, it just transitions into adulthood. All right. So what is one thing that you want to achieve with your parenting of Page. I want her to be happy. I really do. I want her to be happy. I want to teach her as much as I can. I want to provide her with an amazing future and set her up to not fail in her life and just to be happy and thriving and have enough so that she doesn't have to or anyone who's taken care of or have to worry about anything for her for the rest of her life. That's what I want to do now. That's amazing. Yeah.
KB: So for individuals in your position, what is a valuable piece of advice that you have?
MC: The best thing I ever did was find my community. I found a group of like minded parents that were going through the exact same thing that I've been going through. So I always say, find your community. Find your tribe. Find your people or parents or moms or dads that you can relate to. And within that tribe and community, you find your friends. You find those friends that you can vent to if needed. You can go out with you can have a cup of coffee. You can talk about anything. You can go on a girls trip. You can do all these things together because they know your life. They know what's going on in your life, and they can sympathize with you. They can encourage you. So that's what I would the best advice and the most valuable things that I've learned is from other moms in my community. What were the steps that you had to take, I guess, to build that community? Yeah.
Funny thing is, back when Pages diagnosed in 2004, there was Yahoo Groups, and I went on Yahoo Groups and just searched autism parents, and I found one. And I would just message people and see if anybody was in my area. And I found two communities, and one of them was an organization and one of them was another parent that lived close. So I messaged her and we got together and she's the one that told me about all the acronyms in the very beginning. And I was writing notes feverishly, like, what information could you give me? And after that, I said, wow, I'm like blown away by this. So after that, you are in therapy offices and schools constantly. So you meet people in the lobby of these places and you just start chatting with them.
And thankfully, there's things like Facebook and social media platforms because you can find that person and you can form a group. So what I did was a group of moms online. We would together, we would message each other on Facebook. I don't know if Facebook had messenger at the time, but we had each other's phone numbers. We would text each other. We would go for walks. And it was a group of maybe like three or four moms. And we would drop our kids off at school. We would go for a walk. So we were not only getting exercise, but we were chatting about our everyday lives. And our kids were little, like really little. And it just built over the years. And I decided I would start a coffee group. So I went on Facebook and I made a private group, and I called it Coffee talk. And all these people came in and we just set up meetings. So we would set up a meeting. We would get together. 1520 people would get together.
And then I started Mom's Night out. So then that group of ladies, we would go out at nighttime. And so now it's around 200, and it's just in our little wow, that's insane. In San Diego. And then after that was probably about eight or nine years ago. And after you're ahead of your time, girl. After that, there's other groups along the way. And then everybody branches off and you find your true tribe of people. And then now we have we still have the North County Coffee group, even though we can't go out.
And now I have the Autism Mastermind group, which is pretty active right now because of everything we're going through. And our children are older, and all of us now have kids that are 18 plus years old. And so now we're just chatting. And it's great because now you can set up Zoom meetings. And even before this, we were meeting in person, but now we're setting up Zoom meetings for checking in. I call it checking in with your sister. And I just say, hey, everybody, let's just pick one person this week and send them a text, even if it's just an emoji with a heart on it or like a funny little GIF or something and just have it make a smile to their day. So that's how I started. It just slowly grew it organically, and it's pretty easy to do. Even if you don't have people living close to you, you can find people online and chat online, even if you don't meet in person. That's incredible. Finding support and people who have the same experience as you is just insanely valuable just for the human experience.
KB:
That's good humor is the best historical light of things.
MC: And I know that a lot of people wouldn't understand. I actually, on a side note, I went to lunch with a group of moms that I had known that do not have children on the spectrum and the different vibe that we had going, I said to myself, this is strange. I really like hanging out with my mom friends that we all understand each other. Nothing against that group of ladies. But it was just I felt more comfortable being surrounded by people that I knew in my community and understand my life. Yeah, right.
I think it's really important to have shared experiences with your friends. Absolutely. Yeah. And I think that makes for deeper friendships too. I have my best friends now. I also have kids on the spectrum.
KB:
Yeah. I mean, that's awesome. So wrapping up this part of the particular interview, Is there any additional information that you wish to give Where you can find me and things?
MC: Sure. Yeah. I would love for everybody to come and listen to my podcast. It's called autism mastermind. Following me on all the social medias I just started a YouTube channel. Oh, wow. I share what life skills, things that I've done with Paige so how I taught her how to do things And I break it down into smaller steps so it involves a lot of painters tape, which is strange. So you're going to have to go check out the YouTube channel to find out what I'm talking about. Over the years it's very hard for page to grasp the concept of things, so I had to break things down and then break them down again. So I'm doing things like how to sweep a floor, how to vacuum a floor and how to clean things.
And I'm also doing a series on how to introduce your child instead of saying in a negative way or just saying their diagnosis, how to focus on their strength to introduce someone to your child but still get the point across that they are on the spectrum and the things that they may or may not be able to do. So that's me. Autism mastermind all over podcasting and social media subscribing I've subscribed no, this is like really interesting stuff and I think especially like person first initiatives, especially when you talk about kids with certain diagnoses, it's a very important thing. So that's incredible. Is there anything that I should have asked but didn't? Anything that you should have asked? You've asked me good questions, which I love and I'm going to take note from my podcast. I usually tell my guest that, hey, it's like we're sitting down having a cup of coffee and we just let it flow and sometimes we're all over the place.
KB:
This podcast is hosted and produced by Catherine Blanner with the help of Jason Hinklin Lauderdale.
