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Welcome to Real Talk with Tina and Anne.
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I am Anne, and today we have a very special guest.
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Carrie Baker is an author, speaker, podcaster and founder of Kind Families.
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Kind Families supports kids with invisible neurological differences, and the Kind Community is for parents, caregivers, friends and advocates of kids whose brains work differently than their peers but have no outwardly visible disability.
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I want to tell you, carrie, how excited I am to have you on, as I have three kids with invisible neurological differences, and I also do.
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I know it is.
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Yeah, it is very difficult navigating the world with invisible differences, and so I appreciate what you are doing.
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Well, thank you so much, Anne.
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I'm just thrilled to be here speaking with you, and I know we have lots to talk about, so you know you don't do anything halfway, do you?
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I've been accused of that before.
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yes, yeah, I mean, I read every word of your book and you are amazing.
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I so love that you took what you and your son have gone through and started an entire movement, basically to help others who are going through it.
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So can you talk more about why you wrote the book?
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Finding Kind and Discovering Hope and Purpose While Loving Kids with Neurological Disabilities?
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Yeah, absolutely Well.
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I've often said that I'm in kind of version 2.0 of my life, because up until a couple of years ago, I was a financial advisor.
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I was a certified financial planner.
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I helped people with their 401k plans, companies with their 401k plans.
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So this is a whole new path for me really, but it was one that started to really start to grow as a seed in my heart when my son, brady, was diagnosed with autism when he was three years old, and that was something that was not in my plan, in my life plan.
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Honestly, I did not know one thing about autism when it came into our lives and became apparent that that is what my son had, and so it was a long-term shift of perspective for me.
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For the first few years, really, I was just trying to bob and weave and do as much as we could for Brady and thinking we could you know, quote unquote fix the things that he was struggling with and over a much longer period of time, through a lot of different ways, through meeting other families who were going through something similar, through a faith that grew in my heart through the process and understanding that Brady was made exactly the way he was supposed to be made with all the gifts and talents and all the challenges that come along with them, just as all of us are.
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And so in the last few years I really started feeling pulled away from the financial services world and pulled toward this kind community and I did feel like the invisible nature of autism and ADHD, which my son was also diagnosed with, and a lot of other neurological soup ingredients that I like to call it.
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It presented some different challenges.
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I mean, I'm super grateful for all the things he can do, that he has got, all the abilities he does have, but because he looks like every other kid on the street, it did present some challenges for him and for me personally, because there were unexpected behaviors, there were unexpected reactions, there was an inability to relate to other children the way that other children were trying to relate to him and trying to grasp that and figure out ways to help him.
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It took us down a different path than I ever thought I would go down.
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Now I have been accused of being one of the most social people on the planet.
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So having a son who had a really hard time relating to other kids and really just wanted to be as far away from them as possible in any kind of social situation was a new experience for me and the more comfortable I got with who he is, all the things he came, all the gifts and talents he had, I realized I was having these conversations with other moms who were kind of just at the beginning of their journeys and they were going through the same struggles that I was going through initially and I was having coffees all the time.
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I was having conversations after church and at one point I remember my husband said you know, maybe you should figure out a way to address more than one person at a time with some of the things we're talking about.
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And another friend of mine at church had listened to all of the stories that I had talked about in a Bible study group and she said, carrie, you ought to write a book.
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And I'd never even thought of that.
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But the more comfortable I got in who I am as Brady's mom Brady is, as this amazing, kind kid I felt like there were other parents like you that would benefit from hearing the story.
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That number one they're not alone through something that other families have gone through.
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And I certainly don't have all the answers and didn't try to pretend to in any of the communications and writing that I do, but it's a way for me to tell other parents you're not alone.
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Your kid was made exactly the way he or she was supposed to be made and our job as parents is to celebrate who they are and then help them with the challenges that they do have in navigating a world that just really isn't set up for them.
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So that way, oh, yeah, I mean you've touched on so much and we're gonna break all of that down.
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Uh, with your book.
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You say that it's a story of acceptance and joy in the face of a life plan which you just sort of touched on, and it took an unexpected detour.
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You know, when we're young and we're growing up, here we are, we're dreaming about what our future is going to be like.
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You know, even into our 20s, I think, we're thinking about you know what's going to happen, and sometimes life kind of takes over and it takes us in a different direction.
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And I know that I have five kids and I never planned on that, Never and I have three with autism, ADHD and some other invisible differences, and it is very life-changing.
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I adopted all of my kids and they, yeah, I mean I never expected all the twists and turns that our life has taken.
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And that's so true and I think that was part of that wasn't part of.
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It was the biggest part of me coming to acceptance is me finally letting go of that, that vision and that dream, because I was clinging to it for dear life for a couple of years.
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And that's why I mean we gosh, we worked so hard because I was just like if I just work hard enough, if I just run hard enough, if I get him to the right therapist like all this will go away and my little plan will just fall right back into place again.
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you know, Right, right, right.
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And you do think that you think I mean, we started the therapies, we got to the doctors.
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You know we did all of that.
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We thought that, you know, special needs preschool was the answer for one of our kiddos.
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That that would be.
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You know, special needs preschool was the answer for one of our kiddos.
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That that would be.
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You know, he would be.
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He hardly spoke, he had just a few words.
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When I got him at almost four years old and I really thought that if we got him, you know, just completely consumed with all these people and tools and everything, that he would soon be able to speak in full sentences and paragraphs.
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You know, and it well he does now.
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But it took a long time to get him there and you just don't realize how much hard work it's going to be along the way.
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And it's been a journey.
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You know, I was an assistant director for kids with autism at a school and with my three kiddos, I mean, every single kid on the spectrum is different.
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So there's no, you can't like read a book and say, okay, this is the plan of how we're going to reach A, b and C, and you know there's no really plan because every kid is so different.
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Right, it's funny, you know.
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I mentioned that my husband was like how could we reach more people?
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Well, initially, when we were first going through it, that's what we were looking for.
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We were like there needs to be an autism concierge.
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You know, like somebody who.
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You know, it's like somebody who, who you?
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know, looks at your kid and then says, okay, based on him, you need to do A, b, c, d and E, and that isn't out there.
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So maybe you know, when we get through this and when we figure it out, that'll be our business.
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We'll, we'll just make that our business.
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You know, oh, my goodness, how naive we were in thinking all of that, and it became more of an outreach not to say this is what you do, but this is how you still find joy in the be challenges that are going to face us, that are going to surprise us, and we're going to keep making mistakes, like we did early on.
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But at the base of everything we do, it's got to be an understanding of what his identity is based in and that he was put on this planet to bring joy, and to everybody else as well.
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And we've got to help him do that and not try to fit him into a box that was never made for him in the first place.
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Oh, I love that you come up with so many great nuggets.
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Your book is full of them.
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I just kept writing stuff down.
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I mean I'm serious and I don't feel that way about a lot of the books that I read on autism and things like that, but you nailed it, thank you.
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I feel like so much of what came to me is an inspiration of faith and it's a message that I really believe God wants other families to hear.
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And so when I, you know, I really kind of give all that glory to God, because those things were not part of my vernacular until I had this kid that he gave me and the cool thing is, gave me.
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And the cool thing is and this isn't going to be the same for every parent out there but I was so focused on my original plan that I didn't realize that I had a whole other purpose out there.
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So it wasn't just to be even about Brady, it was about me.
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And you know, I'd always wanted to be in finance and I thought that's what I'd do for the rest of my life and suddenly that just didn't mean anything to me anymore and this became my heart.
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I do say in some speaking engagements I've had that my hard thing became my heart thing, and that's how you can really see where your purpose is guiding you.
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You can really see where your purpose is guiding you that sometimes these challenges that we go through are just opening doors that you need to walk through for the next thing that you're meant to be doing, and so it's been a journey for all of us and it is, yeah, for every single person in our household and any person that enters into our world.
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I mean, it affects everybody In a good way, though I'm not going to say in because they are such blessings.
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And what was the journey for your son at the very beginning?
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Because you talk about how hard it was.
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You've talked about it here a little bit and in the book.
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But what was so difficult in the beginning?
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Well, so initially I had no clue that Brady was anything but a little peculiar, because I didn't know anything about autism.
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I did not understand it at all.
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And so he I remember taking him to his two year well check appointment and the doctor said well, he walked on time and he talked on time, so autism is off the table.
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And I was kind of like autism, I didn't know, that was on the table, you know, and so it was kind of startling and so, but it also gave me this false sense of comfort.
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Well, the doctor said he was fine.
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So all of these little peculiar things are just me not knowing that much about kids.
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I didn't have Brady until I was almost 40.
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So, and my friends had all had their kids much earlier, so I wasn't really around a lot of little kids.
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I didn't know what was typical and what was not but, I did know.
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You know, I I did have this kind of gut feeling.
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Every time we went to a play date, he would just run away from the other kids, he would run out into traffic.
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He cried every single day when I brought him to school.
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Things that you know potty training and other things that were just pieces of cake for my friends, you know, were not pieces of cake for us, you know he would these meltdowns in public places over things that I couldn't figure out.
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One of the things that was most concerning to us is he would have what we called sad moments and he would be sitting on a couch watching the Wiggles.
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He was very, very, very interested in the Wiggles.
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They were his main passion when he was two and he would be jumping on the couch and dancing along to the song and then, all of a sudden, tears would just start falling out of his eyes and I could not figure out what triggered it and I couldn't make him happy.
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I couldn't.
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There was nothing I could do.
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The only thing that I could do is let him have some alone time, and then he'd walk out 10 minutes later and say I'm okay, mommy.
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And so there were things like that that were really concerning me.
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But I honestly don't know if I would have figured it out if I hadn't picked up a magazine that happened to be on my desk one day when I was really sitting home.
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I had just dropped him off at school, I'd had a conversation with one of his preschool teachers about some of the challenges he was having there.
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He wouldn't sit in circle time, they told me.
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When they asked him a question, instead of answering he would just repeat the question back to them.
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And so I was just kind of, you know, ruminating on all this stuff back at my desk and I picked up this magazine and there happened to be an article in there written by a woman whose son was diagnosed with autism, but not until much later in life, and he had suffered a lot in his youth and his adolescence, and it was a really hard story to read.
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But as I am reading the description of this boy as a child, it dawned on me that it sounded just like Brady.
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He didn't want to be with other kids.
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He ran away constantly.
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He would have these meltdowns that were kind of unexplainable and we couldn't console him of unexplainable and untreat you know.
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We couldn't console him, and so there was a quiz in the bottom of that article for something which at the time was called Think Asperger's and now it's called the Social Challenges Questionnaire.
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But the same organization still has that questionnaire out there and it's used as a screening tool for autism.
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And I went through that online quiz and I answered 15 out of 15 questions yes.
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And it came up that my son needed to be evaluated for autism spectrum disorder and it just floored me.
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But you know it for him, you know we, just as we started diving into what are the, what are the next steps, and we saw, you know, we heard 40 hours a week of therapy and speech and OT and PT and all these things.
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And you know, not knowing that, all of these things were play-based activities for him, and one thing that he always thrived on was the one-on-one attention from an adult.
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I mean with peers.
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He really struggled, but man adults loved him.
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They still do.
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He could talk like as a three-year-old.
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He could talk like he was a 65-year-old English professor or something, and so adults loved him I have one of those.
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You have one of those I do.
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So you know, when we started getting into the rhythm with him, he loved it.
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He had this one-on-one attention from all of these different therapists who were wonderful, and we used to joke that they were all women.
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Of course, at the time.
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There are a couple of men that actually help out now, but at the time they were all women and we called them all of.
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Brady's ladies you know, like the Beyonce song.
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You know Brady's ladies.
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But so for a long time he didn't really even understand that this wasn't how every other kid on the planet, you know, functioned.
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He didn't have a sibling, he was an only child, and so in his mind it started when he was three years old.
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All kids did this In his mind it started when he was three years old.
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All kids did this, but when he was in kindergarten and first grade, he had an aide in the classroom and I remember him asking me one time well, why do I have an aide and nobody else has?
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an aide in the class and I just told him.
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I said well, brady, you know there are certain things that you're really really good at that other kids need help with, like reading.
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He's a super quick early reader and some kids have a really hard time reading, and so you know it's that's the way it is with you and being around other kids.
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You know you struggle with that piece of it and so we're trying to help you with that.
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But and then he let that go and it wasn't until he was in second grade when we decided, because the school was really not being accommodating to Brady and the things that we thought he needed, we made a move to a special school for kids with learning challenges not just autism, but dyslexia, adhd across the board and we decided that it was going to be important for Brady to know why he was there and there were going to be other kids talking about their diagnoses.
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It was a school that went from first grade to 12th grade, so he was going to have interaction with all different ages.
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So that's when we made the decision to tell him about autism and ADHD.
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And how did he respond when you told him?
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So, as you made the comment that I don't go halfway on anything, I had the whole presentation prepared.
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I had a video with this puppet who referred to Perry the platypus from Phineas and Ferb TV show, which he loved, and I had all the famous people who had Phineas and Ferb TV show, which he loved and I had.
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I had all the famous people who had autism and ADHD and all this stuff and he just kind of took it in and um, I I think I actually wrote about this in the book and I'm waiting for this big, you know special moment between us and he just said.
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The one thing he said was um.
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And he just said.
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The one thing he said was will I get better, mommy?
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And I said honey, there's nothing to get better from.
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This is the way your brain functions, and it's not wrong, it's just different.
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And so and then he said, okay, can I have screen time now?
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And he ran off and it didn't register that he had actually understood our conversation until a teacher at the school called me after school and she said I just have to tell you what Brady said in class today.
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They were talking about anxiety and they were asking the kids to share, like what kinds of things do you think would cause anxiety in a person?
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And so kids were saying, you know, like flying or talking in front of people or something, and Brady raised his hand and said it would cause anxiety if you knew you were different and you didn't know why.
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Oh, that's so beautiful, and so it was.
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That was my confirmation that telling him was the right thing to do first of all, and arming him with as much information about how his brain works as possible and that he was, there was a relief associated with it for him.
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Now it doesn't mean that he doesn't have moments since then where he said, mom, I hate my brain.
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You know when he's having a hard time or when he's kind of coming out of one of these sad moments and he'll say, mom, I hate my brain.
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And that is when I have to say honey, you can't hate your brain, because your brain is what's producing all of these other wonderful things too.
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So you know it's been a journey for him as well, and you know he doesn't.
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We have told him that he is able to tell anybody he wants to tell about his autism and ADHD.
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We don't want him to think that he has to keep it a secret.
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We did encourage him that.
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You know, some people might not understand autism the same way I didn't understand autism when he was first diagnosed.
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So you might want to wait until there's somebody that you care about and that you know, you know cares about you, but you are welcome to share it however you like, and there have been situations where he's wanted to keep it to himself and others where he's, you know, been very forthcoming with it.
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Right, but that's his decision to make at this point Now with the book.
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You know I had been writing for a long time and when I first started writing it was all about the hard stuff.
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You know time and when I first started writing, it was all about the hard stuff.
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You know, it was all about those tough moments and the meltdowns and figuring it out.
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But as he started to grow and we started to see all these amazing things that he was doing, I realized that I needed to shift that in the book to, yes, a conversation that's going to connect, I hope, with a lot of moms and other families about, you know, having figuring out a child has autism and invisible neurological differences and some of the adjustments that we had to make in our lives because of that, but that I wanted this whole section also to be about all the awesome things that Brady has done.
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Whole section also to be about all the awesome things that Brady has done.
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And so when I was able to put all of that together and he read the book, he was, oh, he was all in.
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So, even the hard stuff you know he made me, he made a comment to me.
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He's like mom, now I get it better.
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I understand, you know what you were going through and that it was hard for you and why.
00:24:02.877 --> 00:24:21.546
But he wants other kids to look at our story and say, look, this is just a different brainwiring and it doesn't limit him in any way as to the things he could do any way as to the things he could do.
00:24:21.566 --> 00:24:32.465
So One of my favorite things about your book is that you started with his words, yeah, and that you end with words to him from you yeah.
00:24:32.465 --> 00:24:34.866
I thought that that was so beautiful.
00:24:34.866 --> 00:24:37.067
I loved what he said.
00:24:38.769 --> 00:24:40.750
It was so him, anne, if you met him.
00:24:40.750 --> 00:24:58.060
His foreword, that was just kind of an idea we had talking around the dinner table one night and, to be perfectly honest, I'm a bit of a control freak with stuff like this, so I wasn't sure what the result was going to be, so I was kind of like well, why?
00:24:58.060 --> 00:25:02.303
Don't you write something, and then we'll take a look at it and we'll see what it is.
00:25:02.303 --> 00:25:06.455
And he brought that in in one draft and it was exactly the way it was.
00:25:07.306 --> 00:25:08.431
So you didn't change anything.
00:25:08.825 --> 00:25:14.753
Well, we did a few grammatical edits, but other than that, that is purely his voice.
00:25:16.926 --> 00:25:18.011
So beautifully written.
00:25:43.204 --> 00:25:44.509
And you know he is a kid with a gift, first of all for writing.
00:25:44.509 --> 00:26:00.865
He's written about 150 ADHD and to relate it just perfectly to his personality, so for those who haven't read it yet, he talks about Star Wars and Lord of the Rings, those two book series, or movie and book series that are very near and dear to his heart, and he was able to relate his own experience, you know, to those things.
00:26:00.865 --> 00:26:19.880
And he also has a deep faith, which I didn't know was possible and which I really doubted I guess was possible, with somebody whose brain really was thriving in the black and white and not in the gray.
00:26:19.880 --> 00:26:38.345
You know, and I think and I hope and I pray that what he wrote in there, that he's fearfully and wonderfully made and he is and it really gets that from an inner knowledge that he is and inner knowledge that he is.
00:26:39.685 --> 00:27:08.015
And so, yeah, my kids have an understanding of God and my one son, who's eight, he has such a deep relationship with Jesus and it's so great to see Because, yeah, people on the spectrum can be so black and white, like you said, and if it doesn't fit in, you know, you just can't accept it.
00:27:08.015 --> 00:27:20.726
But you know, in a lot of Christ and everything about the Bible, you know it's about the unseen and so you know you need that tangible thing to kind of prove what you're being told.
00:27:20.726 --> 00:27:26.775
And I love the fact that they are just taking it for its word.
00:27:26.775 --> 00:27:30.599
It's so amazing, you know.
00:27:30.599 --> 00:27:49.395
I want to touch on something in the times in my life where God has found me and changed me the most was in the unexpected, and I call them mile markers, where we, you know, hit this mark in the road and we are never the same again.
00:27:49.395 --> 00:27:55.214
There's no going back to that place and trying to rewind and become that person again.
00:27:55.214 --> 00:28:02.606
You just can't, and I would not be where I am today if it were not for those mile markers.
00:28:02.606 --> 00:28:19.357
And those mile markers got me to exactly where God wanted me to be and you actually, at one point in the book, like in the news of having an autism diagnosis to an earthquake, and I can relate to that.
00:28:19.458 --> 00:28:32.450
When my son, my now 11-year-old, it was about five years ago, I think I've had him for eight years and I knew that there was something.
00:28:32.450 --> 00:28:35.476
I mean I knew he had autism.
00:28:35.476 --> 00:28:42.093
I mean we figured autism, adhd, I mean hyperactivity, everything.
00:28:42.093 --> 00:28:45.018
I mean he had A to Z, it seemed like.
00:28:45.018 --> 00:29:01.038
But when they asked me to do a genetic test because they thought that there was something else, so we did a genetic test and here he has DeGeorge syndrome, which is a deleted chromosome.
00:29:01.720 --> 00:29:17.698
Oh wow, and because he looks so typical I mean there's some small things like he has a little fold in one of his ears and there's like really small things but if you look at him you would think no.
00:29:17.698 --> 00:29:29.415
But they called me and said he has DeGeorge syndrome and you know out of everything that all my kids have been diagnosed with.
00:29:29.415 --> 00:29:35.045
That hit me and I had to research it and we had to do all these things.
00:29:35.045 --> 00:29:43.612
We had to go to the DeGeorge Center Clinic in Columbus, ohio and all these things to try to get more information and try to help him be his best.
00:29:43.612 --> 00:29:56.717
But you know, what it comes down to is when we get dealt the unknown that's when it becomes the scariest.
00:29:58.547 --> 00:30:08.185
Well, that's when we have to trust too, and I think that's one of the reasons that it took me so long is because I didn't have that relationship with God when we started on this journey.
00:30:08.185 --> 00:30:10.047
I put it all on me.
00:30:10.047 --> 00:30:20.153
I put 100% of the weight of his diagnosis and treatment and everything else on.
00:30:20.153 --> 00:30:24.737
If I do enough, there'll be a good outcome.
00:30:24.737 --> 00:30:28.680
We'll just be able to get right back on the original path that I was supposed to be on.
00:30:28.680 --> 00:30:33.423
You know, and not understanding that it you never.
00:30:33.484 --> 00:30:44.297
Just, like you said, I love the mile marker reference that you know, once you get there, you can't turn around and, like I was talking about with the earthquake it was.
00:30:44.297 --> 00:31:01.477
You know, once that earth shakes underneath you, those plates don't go back to where they started.
00:31:01.477 --> 00:31:30.801
Grasp on how good God can be in those hard times, that I will approach those challenging times in my life with a different perspective than I did early on, because I will be able to look back and see exactly how he took this hard thing that I didn't ask for, I didn't want initially, you know, and then turned it into this beautiful gift and but it is a.
00:31:31.943 --> 00:31:42.832
it took me a lot longer than I would have liked for it to take, so you know some of us, you know we just take a little bit longer, and I think that that's part of it.
00:31:42.832 --> 00:31:44.537
You know, it's all part of the journey.
00:31:44.537 --> 00:32:00.983
One of the things that you talk about, which you kind of mentioned, was, you know, that we were made on purpose for a purpose, and the things that happened to us as well are there on purpose for a purpose, and I love that.
00:32:00.983 --> 00:32:02.247
Everyone has a purpose.
00:32:02.247 --> 00:32:11.968
And at the beginning, your son talks about this and honing in on what they are good at, you know, finding what they're good at.
00:32:12.048 --> 00:32:17.728
And my kids are so unique and they touch this world in so many beautiful ways.
00:32:17.728 --> 00:32:38.017
And one of my boys that I talked about earlier, he has so many invisible challenges and he goes to a special needs school, but I'll tell you that he is one of the most kind and loving kids and it's finding those things that they're good at, you know.
00:32:38.017 --> 00:32:40.345
So they feel really good about themselves.
00:32:40.345 --> 00:32:44.936
And we figured out that he is so good at drums.
00:32:44.936 --> 00:33:07.335
We didn't know that he would, but we exposed them to everything and he went to a drum class and here he is doing fantastic and he actually said to me drumming makes me feel important and so go ahead.
00:33:07.335 --> 00:33:24.392
No, I mean he just struggles in so much it just literally I mean it melted my heart and I did kind of like cry a little bit because I was just so thrilled that he felt important yeah.
00:33:25.113 --> 00:33:26.595
Yes, and you know it's.
00:33:26.595 --> 00:33:28.438
We have been trying.
00:33:28.438 --> 00:33:43.748
For instance, right now he's my son is in a hybrid homeschool situation, so he's off school Mondays and Fridays, and we had to do that, you know, unfortunately because of a bullying issue that happened at his prior school, and so we're.
00:33:43.748 --> 00:33:55.219
You know we were kind of thinking, okay, okay, he's in eighth grade, let's take a, take a year to do this kind of low stress option, um, but he's bored, so we're, we're like how do we?
00:33:55.318 --> 00:33:57.371
how do we take up his time on mondays and fridays?
