Not An Island Podcast
Not An Island Podcast
Ep 8. From Grief to Advocacy in Autism Families
When the diagnosis of autism enters a family's life, it often brings with it a tempest of emotions. We've been there too—wading through the denial, wrestling with the fear, and ultimately, seeking solace in acceptance. Today's episode takes you through the heart of that storm, sharing our personal journey and the universal path many families tread upon learning their child is on the spectrum. We talk candidly about the initial shock, the fear of stigma, and how embracing knowledge about autism can be a beacon of light, guiding parents to a place of empowerment and advocacy.
Joining us in this intimate conversation, we invite you to understand how stepping into our children's world can deepen connections, and how the 'sixth stage of grief,' advocacy, is a potent force for change. We navigate the complex emotional terrain of grief and acceptance, and discuss how marriages can be fortified when partners unite in support of each other and their child. The takeaway from our discussion is one of hope—a reminder that, while the journey is challenging, it's also rich with opportunities for growth and that the strength of our community is a wellspring of support for any family navigating this path.
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Hey everybody. We are super excited to have you join in with us on today's episode. If you're listening to my voice right now, odds are you are just as passionate about autism than we are, which is why we need your help. So, really quick, pass this episode on to everyone. You know, the share button is on the screen and the best part is that you don't have to even pause this episode to share it. So please help us achieve our mission to encourage every autism family that we can Head over to Apple and Spotify. Leave us a review like comment, subscribe to our channel on YouTube. It really helps people discover our podcast. And, without further ado, let's get into today's episode. Hello and welcome to Not An Island Podcast, the podcast series where we talk about family, faith and autism, the little place where those three things meet. We're your hosts. I'm Todd.
Speaker 2:I'm Amanda.
Speaker 1:We're the Johnsons and we have a pretty heavy topic for you today, but we are. We're really passionate about shedding light on this because it's important for families to know that they're not going crazy yes. So today we're going to be talking about grief.
Speaker 2:We're going to be talking about grief.
Speaker 1:What does that look like, what does that mean and why? Where does grief fit in the life of a family on the spectrum?
Speaker 2:Yeah.
Speaker 1:Right, so um.
Speaker 2:And if, if you feel like you have a child on the spectrum and you haven't walked through any grief, oh you might you might need to have to hear what we're saying, because I think some people just try to keep blazing ahead, blazing ahead, blazing ahead, and they don't ever come face to face with this thing and eventually it does break them, and so, um, I just, I just want to make people aware of that this is a healthy and it's a good thing.
Speaker 1:It's normal.
Speaker 2:And it's the thing that the Lord can lead you through, and it's vital and it is important to you for you to grow and be who you know you're created to be.
Speaker 1:So we're going to go through. It's going to be kind of a long episode. Maybe we're not sure yet, kind of weighing this one, but uh, uh, scientifically, or I should say, like publications say, there's five stages of grief, right, Uh, talks about denial, anger, bargaining, depression and acceptance. But I say there's a sixth and if you're watching this, if you're listening, the sixth one is a complete banger, Like you're going to want to stay to the end of this episode to listen to this, because it's probably the most important stage, uh, to help just rocket your family into, um, really success as a family, not not not in a worldly way of success, but just finding your place. You know what I mean. So the sixth one, we'll talk about it, but first we're going to go into this. So, uh, stage one Amanda, denial, not my kid, right? How, how did that look for us?
Speaker 2:Man and we were just having a conversation with some friends about this, last night actually, and they, they don't have a child. Uh, this specific, specific person does not have a child on the spectrum and they were like I just don't understand how anybody would, why anybody would go through a denial period and, um, it may be some people don't, but it was a very real part of our journey.
Speaker 1:Um, not wanting to fully accept what we didn't understand, I think it was more of a fear of the unknown thing.
Speaker 2:It was very much a fear of the unknown and I think the denial aspect for us it wasn't so much like a pride thing, like oh, our kid can't possibly have anything you know going going on, then I think it was, like you said, more of a fear.
Speaker 1:Well, there's a fear of the unknown Number one I think you know it was also a fear of the stigma is related to autism and you know, is my child going to fit out? Is my child going to have a hard time doing X, or is my child going to, you know, whatever Like there's so many places you can go with that.
Speaker 2:And when your child is in a place where they are nonverbal, where they're having severe meltdowns, where they're having severe sensory aversions and are very sensory seeking, um, when, when they're going through the hardship of this diagnosis and some of the hardest things that come along with it, you're for me, I, just getting that diagnosis in my mind, meant, okay, this is forever. This is forever something that my child is going to have to deal with. And the denial aspect for me is like I don't want my child to go through that. I don't want my child to be misunderstood. I don't want my child to struggle to learn to communicate, like I just didn't want any of those things for Ezra, and I think that was a huge part of the denial face for me. I wanted it to be something that could be in my mind, easily overcome, like for the longest time I held on to it's a speech delay.
Speaker 1:Well, denial for me looked like in my head. I had this idea of what my kid was going to be. I cried we were going to go fish in and like he was going to be my camp and buddy and we were going to go to the store together and blah, blah, blah, blah, blah, blah. And I need to stop there and say this he's every bit of that child now yeah, yeah.
Speaker 1:Well, you know what was I afraid of at that time? But I was in this denial phase when I found out well, perhaps that's not going to be the case, right? Perhaps there's more to this.
Speaker 2:When you see them so closed in in their own world.
Speaker 1:You know for sure, and that caused in me like this stage of denial. I would say my denial didn't last very long because we had doctors for our son that really helped us navigate. Listen, this actually is a good thing and this is something we wanna tell you. If you are going through the process of getting your child diagnosed medically with autism, trust me when I say it's not a negative thing at all.
Speaker 2:Well and I think there were some people who were like you know, this doesn't have to be negative, but I definitely felt like this is a lifelong, this is permanent, and you're just handed it and you have no idea what to do with that.
Speaker 1:Yeah, when he got diagnosed, a lot of times that seems to be the case and it kind of was for us. But our doctors did try their hardest to help us out and I think for us the biggest thing that we had to learn, that actually opened the diagnosis, actually opened up a whole world to us, not only of like therapies. I mean our son goes to equestrian therapy where he rides horses for therapy for autism, like how cool is that? Right, of course he gets special treatment with therapies and things. We go to theme parks and they actually have accommodations for him.
Speaker 2:But you know, you're just talking about the initial like diagnosis or the denial before the diagnosis. I think once when you move past the denial into accepting, that's when all of those things open up, that's when you start to see light at the end of the tunnel.
Speaker 1:But we didn't know that at the time, we didn't know any of that. But that did. And I just wanna encourage you, if you're going through the phase of denial, know this that the world is getting better and better and better at helping you navigate this.
Speaker 1:There's so many more resources out there, so much more information we were scouring anything we could find to educate ourselves, to learn, to help Ezra get better, you know, and so, so denial is the oh well, maybe, maybe my kid just has a speech delay and then the speech delay turned into, well, he's not really communicating at all. And then, oh well, he is communicating, but different, and you know just that thing. There's denial, but then, ultimately, that denial leads you into a place it can. Honestly it sounds weird, but honestly, if it's a healthy way, it leads you into anger, which is a dark place to be. I spent quite a few months in this phase.
Speaker 2:I think what's kind of important to note about the grief aspect. I think a lot of it happened before we actually got the diagnosis Because we were waiting for so long for it. And this was kind of the in-between. We already kind of knew what we did, know that Ezra had autism before his official diagnosis.
Speaker 1:So I just wanted to throw it in there. I would say the anger came in in this form. The anger came in as my child never asked for this. I never asked for this. My wife never asked this. Why did you? I'm gonna be completely honest with you guys. Why did you do this to us, god? Why my family? Why me? Why do we have to be the family that can't be included in things right? Why are we in the position wherein that we can't go places because my child will be a disturbance or misunderstood at his younger years? That was anger and that was a dark place, and I did. I blamed God. I went through times of blaming me.
Speaker 2:I think it just causes you to ask. I did ask the hard questions of God and that frustration and I just wanna put this in there. I think God really wants that anger. He wants you to be honest about it and he wants you to ask those hard questions, because that's how healing really starts.
Speaker 1:Well, that, and also like, he created those emotions in you. He created the capacity for you to have those emotions. That is a step towards healing, like you said, like, and it's so important to get that out. The thing is, god's not mad at you for being angry. He loves you and he honestly is holding you through it, like, holding you like a child through this Like. There's some times where there's there aren't words, you know, and walking through anger, I had a lot of those moments there just weren't words.
Speaker 2:I don't think he takes any delight in our anguish and in our heart.
Speaker 1:No, it doesn't take delight in it.
Speaker 2:I think he's just. He's just looking for us. He's longing for us to look to him in it, though, and ask those hard questions. Because, he, like you said, like that's how he brings healing.
Speaker 1:I really believe. David asked hard questions. Just go read Psalms. That dude was like bro.
Speaker 2:Yep, he was lamenting and letting it all out.
Speaker 1:I really believe, I really believe there's an art to that and the art is to find healing through that. So yeah, anger was Denial, anger, bargaining, bargaining bargaining. Well, bargaining sounds like this. Like well, maybe there's a way out of this.
Speaker 2:Yeah, oh yeah.
Speaker 1:Maybe, maybe.
Speaker 2:I can. Maybe there's a magic cure.
Speaker 1:Maybe my child is deficient in this one vitamin. And that's why he has autism as a whole. Not disagreeing with that at all, If you're you know and not discounting anybody.
Speaker 2:We get the desperation. We totally, completely understand the desperation to and for some people. There's different things that really have been like nearly an overnight success.
Speaker 1:And some. For some children things work, other children they don't.
Speaker 2:Right.
Speaker 1:Yeah, and autism is a spectrum. It's so wide that some kids might just have a different source than others, right?
Speaker 2:And following, like a lot of the parent boards and things like that on Facebook or Instagram or wherever these different threads. You see a lot of different opinions on this, but I understand what it's like to be in that place of desperation, that you want nothing more than to be able to take this from your child. You want nothing more than to have a solution. You're bargaining all the things like trying to figure that out.
Speaker 1:You're literally spending your last pennies just trying to find.
Speaker 2:We looked into so many different therapies, so many different things Disorder- yeah. Yeah, people think about some of them, todd, if we could list them. That I mean there was craniosacral therapy, not saying that doesn't work we never tried it but I mean.
Speaker 1:We never got to.
Speaker 2:It's expensive. It's very expensive. People have huge success with it and there's like people do detoxes and their children have parasites, and I mean it's crazy there's so much stuff. Sometimes things work. People do chelation, people do specific diets. We did do that, we did do a specific diet for a period of time, but that was more so because of allergies and all the irritation and Ezra's gut.
Speaker 1:We're saying all this just to say that there's a lot of solutions out there and that we've tried a lot of them and that was our way of bargaining.
Speaker 2:And don't let anybody shame you. If that's the avenue that you're in, go for it.
Speaker 1:Like if it works for you, let us know in the comments, like that's awesome, like we want to see children like just in their full version of themselves, whatever that looks like.
Speaker 2:And, in the same breath, don't be in the opposite shoes. I just, I hate to see the war that starts over these kinds of things. It's honestly, it's like we're all on our own journey. We're all navigating this, the best that we know how.
Speaker 1:But in the same breath we're all in this together.
Speaker 2:Right.
Speaker 1:Together.
Speaker 2:Like that's the main together People have such strong opinions and I think you know our podcast is not an island podcast. I think that's what isolates so many people is that they're so bullheaded, and this is the way it has to be, and that's everybody's journey is gonna look different. I don't know how we got off into all that bargaining. Bargaining, bargaining.
Speaker 1:All right, that's what bargaining looked like for us it's. It can be an expensive stage of grief to be in. The fourth will be depression. So you go from bargaining to find out that bargaining did not work.
Speaker 2:Or maybe it did for some of you. Maybe it did.
Speaker 1:But if you find out that it didn't work, it drives you into hopelessness and depression. And can I have depression as a Christian? Amanda, yes, I can. I truly believe it is a full blown chemical response in your brain to losing every bit of light that you thought was there.
Speaker 2:We are body, soul and spirit. You know there are things in the spirit realm that are, you know, all the, that's a whole subject. But, like so many people, equate. You know if you're walking through a period of depression, there's chemical things happening in your body as well. And we need to address all of those things. That's a whole other subject.
Speaker 1:Yeah, but depression is a very real part when you feel like okay.
Speaker 2:The hopelessness.
Speaker 1:Yeah, and that that to me was honestly kind of a short phase. I would say. Depression really went through us pretty quickly.
Speaker 2:I think we just flung so quickly into okay, let's just take action. Well, that's not yet. We had this, we had acceptance.
Speaker 1:This is the next one we did, which acceptance is a long it's been a long chapter of our life, accepting him for who he is and really like learning who he is.
Speaker 2:I feel like that's continued as he changes and evolves and grows. It's like where we learn to accept.
Speaker 1:Yeah, I would say we didn't really start fully investing in learning who he was like to a very deep point until this stage until acceptance Cause we were so busy denying and being angry and bargaining and being depressed and looking at ourselves that we weren't going look at the gold in front of you.
Speaker 2:Right.
Speaker 1:Look at this treasure that is in front of you. That really and I wanna say this if you're having a hard time accepting, or if maybe you're going from the depression phase into acceptance, it's a hard phase to get into. Hear me out on this. The Lord has entrusted you to be a parent to an innocent child who has boundless treasures in their life just waiting to be uncovered by you. As a steward like, god has chosen you to steward their lives as a parent, and so how you steward that well, no pressure will determine a lot about how they will live and who they will be when they become adults and really accepting who they are is the key to that.
Speaker 2:And I think for a lot of parents to special needs children, specifically autistic children.
Speaker 2:I think part of that acceptance for us was learning not trying so hard to pull Ezra into our world and learning how to get into his and when we accepted that this is what he's going through and this is the diagnosis, this is the thing we're dealing with. It was like, I feel like that's where people, a lot of people, mess up. They're just, so you know, hell bent on bringing their child into their world instead of learning to get into it.
Speaker 1:There is some application to that, because your child needs to. There are some things that your child just has to know.
Speaker 2:Right.
Speaker 1:Right.
Speaker 2:But thinking back to those baby stages where he didn't make any kind of eye contact, where he was spin wheels for hours and things like that, we would get down on the floor, we get down on his level and we'd engage in the things that he was doing. And actually engaging in his world brought him into ours.
Speaker 1:And so they went interest into. Oh wow, they do want to communicate.
Speaker 2:Yeah, they do care about the things that I care about.
Speaker 1:Yeah, so-.
Speaker 2:Now it looks different.
Speaker 1:Now we talk about doorbells for hours and different things, his obsessions and things that he loves.
Speaker 2:But I think that really you know accepting him fully, that helped actually bring him out of that.
Speaker 1:I would say that is the five stages of grief, right, but there is a sixth one that is so important to us, and it's literally the reason we're doing this right now.
Speaker 2:Not on Webster.
Speaker 1:Not on Webster.
Speaker 2:This is yours.
Speaker 1:This is Podster and that sixth stage of grief. If hey, listen, if you're like a PhD, or maybe you're like a doctorate in whatever, and you steal this from me, I'm coming for you.
Speaker 2:Whatever Todd.
Speaker 1:And this is beyond acceptance what comes after accepting your child, advocating for your child Advocating, advocating for others, advocating for other families, advocating for change to happen, not necessarily in your child, not necessarily in families around you, but for change to happen in the world surrounding them so that they can feel included, they can feel accepted, they can have hope, they can have encouragement and they can feel like their logo, not an island right. They can feel like they're not alone. Because that is a killer.
Speaker 2:Until you go through all of these steps and you truly grieve this thing out, you cannot be effective Boots on the ground advocating and creating a movement that's so needed. And so many of you may be isolated and stuck because you haven't you haven't been angry, maybe you maybe haven't had went through some of these steps, or maybe you've been avoiding them. And I, just today, right here and now, I think our job is to give you the permission, if you haven't fully grieved, and I'm not saying go lock yourself up in a dark place and don't come out, but really sift these things through so that you can fully accept your child and other children like them, because you're needed. A lot of us really need each other and in order for us to be there for each other, we have to go through this.
Speaker 1:And you don't have to go through it alone either. The last thing a child unless on the very end of the list of a thing a child ever needs and that's apparent to be absent because they're so distanced from really what their child is going through.
Speaker 1:And if you can't be in the trenches with them because you're going through stages that seem to just never end. Then we wanna bring hope and we wanna bring encouragement to you. That's why we're doing this that you are alone number one and that there is more to your life than just raising a child on the spectrum. What is that more? Well, for a lot of us, it's advocating for that child on the spectrum. It's advocating for what children like them go through. It's advocating for the families who don't know where to turn. It's not just us. If you go on social media, just look. You type in autism on any social media website. You will find so many people who are absolutely passionate and lay their lives down to let other families know, and let people know that they're not alone.
Speaker 2:So I know what I'm about to say is easier said than done, but for all you married people out there, allow this to push you closer together and into each other and more dependent on each other instead of apart.
Speaker 2:You are not a statistic and I know there's a large demographic out there and a huge statistic of marriages ending in divorce when there is a child with special needs in the midst. And you have to properly go through this, whether you need to reach out to a therapist, you know a counselor, whatever you need to do to take care of yourself. But let this push you closer together because if you lock arms, there's literally nothing you can't go through together. But I know for a lot of people this pushes them apart and maybe one of the spouses has properly grieved and the other one is just still in denial. Maybe they've never moved past that stage and they just move on with their life and let the other parent, you know, fill those shoes. And you know this is so much easier to do together and I know that that's not everybody's story and that's not everybody's case.
Speaker 2:But if you're struggling in your marriage, just really, really listen to maybe some of what we've said today and just try your hardest to do what you need to do.
Speaker 1:I'll tell you what if you're struggling in your marriage or maybe having a child with special needs? A child on the spectrum has put a damper on things. You don't have to leave a comment. In fact, I'd rather you didn't Send us an email, not an Island podcast at gmailcom. We will respond to you and we will help you in every way that we possibly can, whether it's just advice. Now, we're not professionals we can't give like professional advice, but we can point you to people.
Speaker 2:Yeah, I think we probably need to do a whole episode on that, because it is a doozy.
Speaker 1:And we want you to know we care about you, like wherever you are on the other side of the screen, on the other side of this camera, like we care about you If you're in this situation, like we are there is a light at the end of the tunnel. There is, and you can make it through this. And we are here to help, and it's not just us. There's a whole world of people who are ready to be in your corner.
Speaker 2:So and if you have a child who's a newly diagnosed and maybe you are just still in the beginning stages of this process, don't feel any shame or any guilt about where you're at. Take that time that you need to really process through all of this and, like Todd said, know that like this is not the end. All be all the paperwork in your hand that says your child has a lifelong diagnosis is not the end of their life or the end of their journey or the end of their story. It's the very beginning and there's so much more to come. There's so much progress you're gonna get to witness. There's so much overcoming you're gonna get to witness and there's so much joy to be had as well, absolutely.
Speaker 1:With that being said, I'm gonna end on one final note. I want you all to do some homework. If you're watching this on YouTube Not homework, homework If you're watching this on YouTube, maybe you're listening to this do me some homework If you are in any of these stages. Number one you can comment down below if you feel brave enough, just you know. Hey, here's where I'm at. You know we will get in touch with you, but your homework is this. Your homework is go on Google or any search engine and type in influential people with autism, or maybe famous people with autism. It will blow your mind.
Speaker 2:There's more and more people who have changed.
Speaker 1:It will blow your mind the people who have changed the entire world. Those people have autism. I'm just gonna use an example. This thing here is an iPhone and we're not sponsored by Apple. I wish we were, but we're not. The man who designed that phone had autism. He was on the spectrum. The man who has created the businesses that are changing society as we know it SpaceX, tesla.
Speaker 2:We've mentioned these things before. It's on the spectrum.
Speaker 1:There's an entire list of people. Albert Einstein well-known that he had autism. Just know this. Like she said, it's the very beginning. I just wanna leave you with that, so you wanna go and pray us out?
Speaker 2:Yeah, lord, we just thank you for walking us through grief, for giving us your strength in the form of joy, lord for teaching us along the way everything we've needed to know. Lord for holding our hand and guiding us even when we were just in the absolute trenches of it. And we thank you that there's hope, that there's light and that there's a whole other side. And I just thank you for every person and whatever stage that they're at right now, lord, that you'd meet them right there, lord, that you'd begin to bring healing into their lives and into their marriages, and that you'd begin to bring them hope right now. In Jesus' name, amen.
Speaker 1:Amen. Well, this is Not an Island podcast. I'm Todd.
Speaker 2:I'm.
Speaker 1:Amanda, we're the Johnsons and until next time, peace, peace, peace, peace Cheese, and God bless you. The Rabb finish you.
