Transcript
Megan Ashley (0:00)
With a $5 meal. Deal with new McValue. You pick a McDouble or a McChicken, then get a small fry, a small drink and a four piece McNuggets. That's a lot of McDonald's for not a lot of money. Prices and Participation may vary. McDouble meal $6 in some markets for a limited time only.
Ray Porter (0:15)
Craving your next action packed adventure? Audible delivers thrills of every kind on your command. Like Project Hail Mary by Andy Weir where a lone astronaut must save humanity from extinction. Narrated with stunning intensity by Ray Porter. From electrifying suspense and daring quests to spine tingling horror and romance and far off realms, unleash your adventure aside with gripping titles that'll keep you guessing. Discover exclusive Audible originals, hotly anticipated new releases and must Listen bestsellers that hook you from the first minute because Audible knows there's no greater thrill than the one that speaks to you. Discover what lies beyond the edge of your seat. Start your free 30 day trial at audible.com wondery us that's audible.com wondery us.
Megan Ashley (1:03)
What'S up you guys? Welcome back to another episode of In Totality. I'm your host, Megan Ashley. Listen, we're going to have a conversation that is extremely sensitive and so I kind of just wanted to state my intentions before we go into the conversation. I try to do a really good job at being transparent and vulnerable with this platform and using myself and the experiences and the lessons that I have learned to maybe help you feel more seen and help you navigate through your journey and your faith walk with the Lord. So this conversation, I guess I just, I'm asking for grace. I'm asking for grace for me because I'm sharing some, something that is probably the most personal thing to me, which is my children sharing about one of my children and grace with each other. I know that this particular conversation can open up a lot of opportunity for division and discord and arguments and all the things. And that's not the intent for this. The intent for, for this conversation is to be transparent, to be honest, to be vulnerable and to give hope. And so I pray that you. Yeah. That you give me grace as I kind of just navigate through this, this topic and then you would give each other grace in the comments and as you dialogue about some of the stuff that we're going to talk about today. So hope you enjoy this conversation. All right guys, welcome back to another episode. This month, if you are not aware, is Autism Awareness Month. And so this is where the world becomes aware of what some of us have to live with every single day. For those of you who don't know. And it's crazy because I feel like I haven't really, like, dedicated an episode to talk about what my experience and my journey has been with my son Caleb. And I'm sure for a lot of you who probably have watched, maybe have followed me for some time, I've talked about him often, and you've heard me even talk about him on other platforms, but I don't feel like I've ever just said sat and talked about it on here, on, in totality. And so I was kind of feeling burdened to talk about it. And. And so, again, I just pray that you guys would give me grace as I kind of navigate through how I want to, you know, be vulnerable and transparent with this particular conversation. So, yeah, this month is autism awareness month, and so you'll see a lot of people say, light it up. Blue. Blue is like the autism color. You'll see a lot of puzzle p all the things. And so, yeah, I just kind of wanted to share what my journey is and what my journey has been when it comes to autism. For those of you who don't know, I have a middle son. His name is Caleb, and he was diagnosed with autism when he was 2. And so a little backstory. My ex husband and I, when we first got together, we got pregnant, or I got pregnant with our oldest son, Eli. We were not married. And so coming from a church background, coming from the girl that was so active, have been involved in church and church activities. I went to Bible college. We were on summer break. I met my ex husband and I got pregnant at the beginning of August. And so that came with a whole lot of shame, which is a whole another topic for a whole another podcast. But it came with a lot of shame. It came with a lot of ridicule from the church. It came with a lot of hurt. You know, people talked bad about me. I. You know, it was just. It was hurtful. People that I respected, respected, people that I loved weren't as supportive. It was just a hard time. I greatly disappointed my mom. I greatly disappointed a lot of people who. Who cared about me, even maybe people that were a little younger than me, that looked up to me. But most of all, I greatly grieved the Lord by stepping outside of his divine order. And I felt that pain and I felt that grief and I felt that shame deeply. And because the embarrassment that I had there was even a temptation of, you know, maybe not having Eli not going through with the pregnancy. And maybe that would, you know, keep me from having to go through the shame of having him and not being married. All the things that typically come along with church girls who get pregnant before they get married. Right. And so I'm giving you all of this background because when my ex husband and I finally did get married, Eli, at the time, when we got married, Eli was only a few months. And I desperately wanted to have more babies. Now I've always wanted to have lots and lots of kids. My mom could tell you that I've always wanted to have, like, lots of kids. I think because I was the only child growing up in my mother's home. I always wanted lots of siblings. But I also wanted to have another baby, if I'm being honest, because I felt like it would redeem me with God. Like, I thought that if I finally had a baby when I was married, that God would somehow not be mad at me anymore for having Eli unmarried. And so we tried really hard to have another baby. I remember when Eli was one, we tried for a year and could not get pregnant. And so the church that I. That I was serving at and the church that I attended at the time, we were going through a series on the book of Jude. And Jude is talking about Contending for the Faith. And that was the topic during that time. That was the. The subject of our. Of our journey through the book of Jude. And I remember very vividly, like, you know, obviously, I'm still trying to get pregnant. I'm still trying to have our second child. I'm, you know, I'm begging God, I just want to have a baby. I just want to have a baby. I just want to have a baby. And we're going through this, this series contending for the Faith. And I remember clear as day, I was sitting in church. I remember where I was sitting at. I was on the far. Like, if I'm looking at the. This, the stage of the church, like, I'm sitting all the way on the right hand side towards, like, the middle back of the church. And I remember in my heart and in my mind just pleading with the Lord to get pregnant. And I was just like, God, please, like, please, please, please, I really want to have this baby. I really want to have this baby. And I felt like the Lord like, silence, silence me. Like, it was like, okay, I heard you. Like, he was like, okay, I heard you enough. And I sensed that the Lord wanted me to pray for other women who were trying to get pregnant just like I was trying to get pregnant. And so there were two other women in the church who were trying to get pregnant and were having a hard time. And so I stopped praying for myself and praying for my pregnancy. I started to pray for their pregnancy. And so a couple months later, I find out I'm pregnant. I'm so elated. I'm like, oh, you know, we're pregnant. We're finally, you know, having our baby the right way. Like, we're finally having our baby the right way. And so I remember praying about the name of, like, what should I name Caleb? And what should I name this baby? And I went through so many different names, but the name Caleb kept coming up really, really strong. Caleb was one of the spies in, in the Old Testament who had great faith, who felt like they could conquer and that the Israelites could conquer the land. And so that name was just very, very, very strong on my heart. And it was strong on my heart because, number one, during the time that I was praying to get pregnant with Caleb, we were talking about contending for the faith. And then the. The name Caleb, he was a man of great faith. So that name just felt so. Yeah. So I get pregnant with Caleb. We have him. His middle name is Jude. Fitting, obviously. And so I remember this was like, oh, this is my faith baby. Because it took. I felt like it took so much faith for me to have Caleb. Like, oh, this is my faith baby. Right. And that's why his name is Caleb Jude. And so Caleb was born. And I'll never forget when I, you know, I had. I had to have C sections with all of my children. And so I remember when Caleb came out, I remember looking at him and seeing his face and, like, something so powerful came over me that, like, this child was different. I don't really remember much of anything after they gave, like, they gave me a certain medicine that kind of puts you in a twilight. And I don't really remember everything, but I remember having a strong sense of when I looked at Caleb, I just knew that something was different about him. I had such a strong, overwhelming feeling. This child is different. I remember. I remember them wheeling me in, and it was halfway between the hallway and the recovery room. And I remember that strong sense. And that thought came over me. This child is different. And then after that, it kind of goes back into this, like, twilight where I don't really remember much. And so over the next two years, you know, Caleb was a little different, but I didn't really notice major, major things. I just noticed that he didn't really babble that much. I noticed that, you know, he was a little delayed when it came to rolling over and when it came to crawling and, like, I picked up on little stuff like that. But I think because I was so scared to admit that anything was wrong with him or just didn't know, just wasn't educated to know what to look for, I just kind of ignored it. But thank God that we had an amazing pediatrician, Dr. Robbins, and he was so on top of everything, and he noticed that Caleb was kind of delayed, and so he wanted us to get him evaluated. And so at this point, Caleb was 2, and I had just had Jonah right before Kayla was diagnosed with autism. And so we go through this evaluation, and the evaluation is so long and brutal. And, you know, you have all these doctors looking at your child like they are some sort of science lab rat. And, you know, they're looking at them and observing their behaviors and all the things. And as a parent, you don't really know what's happening. You're just watching as they're watching your child. And so we go through this. This full day of evaluations, and they send us home, and then we get a phone call from. From our doctor, our pediatrician's Dr. Robin Robbins. And he calls us and he asks us to come into his office, my ex husband and I and our other two boys and Caleb. And so he brings us into the office, and he says, based off of all the evaluations and the testing, Caleb shows signs of autism. And so this is back in 2014. I didn't really know much about autism at all. I think I heard about it, but I didn't know much about what autism was. What does that mean? You know, it. It sounded scary to us at the time because we were so unfamiliar and so uneducated and. And he was, to be honest with you, when Dr. Robbins said autism, I don't really remember hearing anything else that he said. I just remember autism and it sounding like an echo in a hollow room that it just kept reverberating off of my brain and off of my ears. Autism, Autism. It was like I didn't hear anything else. And even visually, like, I remember what the room looked like, but everything just went blurry. Like, I don't really remember much but autism. And so I remember we got in the car and I kind of just stared out the window the whole way home, running through every possible scenario in my mind at what could possibly be our lives because of this diagnosis. And from that moment on, started a very interesting journey with me as a mother, but also with Me as a, as a believer. And so for those of you who don't know, autism is a neurological disorder. It's not something that you can pinpoint and bottle down to one size fits all, because that's not how autism work. Autism is very. And it affects people differently. There are some that are high on the spectrum, and there are some that are low on the spectrum. I'm sure you probably have heard a lot of people recently that have been diagnosed in their adulthood with autism, and it's because it's such a great spectrum. Jordan and I often joke around and say we're probably all on the spectrum somewhere. If we're honest, if we boil down every small quirk and characteristics to our personalities, I'm sure we would fit somewhere on there. But particularly when it comes to Caleb, it's. Yeah, this, this, this journey has been very unique because Caleb is also non verbal. And a year after he was diagnosed with autism, he was also diagnosed with what's called Fragile X syndrome, which put a whole nother layer to our lives and what life would mean for Caleb. Fragile X is a dysfunction in the X chromosome that doesn't allow the body to produce the protein that's needed for brain development. So technically, Caleb would be considered mentally impaired. When they brought us in to tell us about Caleb having Fragile X syndrome, it was extremely devastating because with autism, it was like, okay, you know, there's a lot of people that have autism and live normal lives and have jobs and family and friends and, you know, social lives, and they graduate and there's tons of people who just live normal lives with autism. So I think for me, hearing autism, there was always like this hope that, like, oh, yeah, like, he'll be fine. Like, you know, we're just gonna go through the therapies and we're gonna do ABA and we're gonna do speech therapy and occupational therapy and all the things, and he'll be fine. And then when the Fragile X syndrome diagnosis came, it was like, there's no cure for it. This is what it is. And so I remember sitting with a social worker, my ex husband and I, and they told us Caleb would never know who we were. Caleb would never know who his siblings were. He would never be able to identify us as his family. He. He would not graduate from high school. If he did, he would be in his mid-20s, that Kayla would not have a normal life, normal social life, never get married. He would never be able to live on his own, that he would be completely 100% dependent on us solely for the rest of his life. And so, yeah, those are. Those are the things that they sent you sit down. Sit you down and tell you about your child. Now, mind you, this is not just any child that I just happened to get pregnant with. This is the one that I begged God for. This is the child that I had begged and pleaded and lamented and petitioned God for. I would do anything, God, if you would just give me this baby. That's. That's Caleb. That's the one that I begged for. And he's the one who now has two incurable diagnosis. My faith in God. I don't want to say that my faith was shattered, but I was deeply, deeply, deeply, deeply, deeply hurt that God would allow me to beg for a child, that he would also allow for two incurable diagnosis. And so Caleb was my first introduction into what grief really was. What, Like, I never had felt grief before until I came to the reality and the knowledge that my son has two incurable diagnosis. Now, I want to read the definition of grief because I often think that people immediately think of just death. But grief is a. A natural emotion when it comes to experiencing a great loss or sor. Whether that be the loss of a family member or a person that you love, like their physical lives being lost, or it could be a extreme life change or a loss of a relationship. Like, grief is something that we all experience, right? Grief is something that I am learning that that connects us to God in a way that we can't experience in any other way outside of grief. And so I think that the. One of the. One of the hard things that I had to learn and thank God I had someone in my life at the time that told me, you know, as soon as we got the diagnosis, I remember I called this person and she was the only person I felt like I could talk to about it because she deeply understood. Because, you know, 20, over 20 something years ago, her son was also diagnosed with autism. And so I remember calling her and telling her, and she told me, megan, this is something that you're going to have to grieve. And I could not understand what that meant because again, at the time, grief only was in my mind. I only knew grief in the context of death, of someone's life not being here any longer. And so I couldn't understood what she meant by you're going to have to grieve this. And I'm like, what do you mean, grieve this? She was like, when you got pregnant with Caleb, you did not see this happening. Correct. And I'M like, no. She was like, you pictured his life being full, and you pictured baseball games and basketball games and football games, and maybe he would play soccer, and maybe he would ride dirt bikes and play on scooters and throw footballs, and he would have lots of friends, and he would have birthday parties and kindergarten graduations and middle school graduations and high school graduations, and he would grow up and he would get married to a beautiful young lady and you would have grandchildren and all the things you, you. You had that picture in your mind. And I'm like, yeah. And she was like, well, now this diagnosis gives a death sentence to that, to that picture. It's. It's like, now you have to grieve what you thought was going to be. That may not be. And so Caleb getting those diagnoses was my first introduction into grief. I have to now grieve what I thought would be the life that Caleb. I thought Caleb would have, the life that I thought we would experience with him. I now have to grieve that. And although she said that to me, I don't think that I really had the maturity to really know what that meant. And. And I probably needed people in my life to help me process that grief. But when you are young, you know, my ex husband and I, we were young and we had two other children and we're working hard, hardly making any money, right? But we have to provide for. For our family. And it felt like there was no time to grieve. We just have to figure it out. And when your child gets diagnosed with autism, they are thrusting you into all the things. Because early intervention, early intervention, that's all you hear. Early intervention, early intervention. So we got to get them in therapy, we got to get them with an occupational therapist, we got to get them in speech therapy, we got to get them in physical therapy. Do you want to do ABA or do you want to do a different type of therapy? Like, there's all these decisions that you have to make, and you feel like you have to make them right away. Because early intervention, he's two at the time, you know, when he got the fragile X syndrome, he was three. You know, we gotta get this done before five years. Like, these are the primal years that you have to just. So there's all this pressure and so there was no time to grieve. All. All we had to do was just act and get stuff done and looking back on it. And if I were to help any young parent or any parent who gets a diagnosis, is that, yeah, give yourself Time to grieve, you know, yes, respond, get your child in all the therapies, but also give yourself time to grieve and feel and process what is extremely painful and extremely complex and extremely hard to. To. To process and navigate through. And so I don't think that I dealt with it the right way. When I look back on it and all those years ago. Caleb will be 13 this year. When I look back at Those years almost 10 years ago, I don't think that I handled it well. But what I will say is, is that God was so kind and merciful to me, that although I was so frustrated and angry at God for allowing this to happen, he still allowed me to experience a part of himself that I don't think I would have experienced any other way outside of going through this type of grief through Caleb's diagnosis. And what I mean by this is, is that there's something that there's a quote. I don't think I will be able to read it verbatim because some of the words are in Latin and God knows I can't speak Latin, but there is a quote by Martin Luther and he basically is saying that there are deep, deep things that God reveals to us through prayer, through the meditation of God's word, but also through trials. And I was listening to John Piper and he was saying how like, there is a fruit that we can only eat during grief that stores all the nourishment that we need that we can only have and only get in grief. And when I look back on my experience with Caleb being diagnosed with autism and how that felt like such grief to me, I look back and I see how much God exposed so much of himself to me out of his mercy and his kindness. Because I truly believe during that time my heart was growing far from the Lord, mainly because I was so angry at him for allowing this to happen. But I remember, I remember sitting on the floor with Caleb and Caleb used to do this thing where he would just scream all the time. He would just scream like there. Like there was nothing that you could say or do to calm him down. He would just scream and not scream in a way where he was like being like violent or angry. But he would just. Like when he would cry, he would just cry and cry and cry and cry and cry, and it was like he wouldn't be able to stop. And I remember at, you know, by the time Caleb got his second diagnosis, I was a stay at home mom and. And so Eli and Jonah and Caleb, they're all in the house and they're all under five at this point. And, you know, so you can imagine how chaotic my life was and how chaotic the home was because I had all these young babies. And Caleb was in his, in one of his moods and he just couldn't, I couldn't soothe him. And so I'm sitting in the middle of the floor and I'm just, you know, kind of rocking Caleb and I couldn't get him to calm down. I couldn't get him soothed. And I remember sitting there and I just started crying. I ran out of options. I felt like I could not get him to calm down. I just felt like everything was just out of my control. You know, I'm looking around and there's toys everywhere, there's dishes in the sink. And life just felt chaotic. And this beautiful child that I prayed for, I cannot get him to settle. And I remember just so loudly in my heart asking the Lord why like it? I don't, I don't remember it coming out of my mouth, but I remember how loud it was inside of my heart. Why. Why did you let this happen? Why are you letting this happen? I, like, I thought we were good now. I didn't. I thought we were good now. Like, I got married. We're. We're active and involved at church. You know, I thought we were good. And I feel like you're punishing me. Why are you punishing me? And why are you deciding to punish me through this baby who had nothing to do with anything? This, this poor, innocent child? You're causing him to suffer and I don't know why you're doing this. You know, I've believed in you my whole life.