17 Is Autism Really God's Design? The Faith Crisis Every Christian Special Needs Mom Faces

• Are you struggling to find support and resources as a parent of a child with special needs? 
• Do you sometimes feel distant from God, questioning His purpose for your child's challenges? 
• Have you found yourself focused on "fixing" your child rather than embracing who they are? 

In this episode, we welcome JJ LeVan, an award-winning author and mother who shares her 27-year journey of raising a son with autism. JJ opens up about the challenges of navigating autism in the late 1990s when resources were scarce and awareness was minimal. She discusses her transition from wanting to "fix" her son to embracing and celebrating who God created him to be, which ultimately inspired her children's book "He Meant You to Be You."

Featured Guest

JJ LeVan is a wife, mother to a blended family of five adult children, and an award-winning author. Her oldest son's autism diagnosis in 1998 inspired her advocacy work and her children's book "He Meant You to Be You," which celebrates God's love for uniquely created children. JJ blogs about her family's autism journey at "Travels with My Rain Man."

Connect with JJ LeVan

• FB: https://www.facebook.com/JJLEVANWRITER/
  IG:  https://www.instagram.com/jjlevanwriter/
  Website: https://www.jjlevan.com/
  He Meant You to Be You: http://www.amazon.com/dp/B0CHPT7YN6
  Church Locator: https://keyministry.org/joinchurchnetwork/
• Special offer for listeners: Free paperback copy of "He Meant You to Be You" (visit JJLevan.com for details)

Resources Mentioned

• KeyMinistry.org - Resources for churches developing disability ministries
• "He Meant You to Be You" - JJ's children's book

Keywords: Adult Children With Disabilities, Autism, 

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Disclaimer
The views and opinions expressed in this episode are those of the guests and hosts and do not necessarily reflect the official policy or position of Speaking Life Into Motherhood. None of the advice or discussion on the podcast is medical advice. Always consult with your medical provider before using any supplements, essential oils, or therapy methods.

Transcript

Elyse Scheeler (00:01)
Welcome back everyone. Today I have JJ Levan with us. JJ is a wife, a proud mother to a blended family of five adults, and a fierce Dutch Blitz competitor at their game night gatherings. She is a member of the SCBWI and an award-winning author with a heart for autism and its caregiver community. She released her children's picture book in 2023 entitled, He Meant You to Be You, which shares God's love for these uniquely and wonderfully made children.

Inspired by her oldest son's autism diagnosis in 1998, JJ continues to spread awareness in her guest blogs and candidly shares heartfelt autism adventures on her blog, Travels with My Rain Man. With a passion for Jesus and a message of hope, JJ inspires caregivers and families on their autism journey. Thank you so much for joining us today, JJ. I appreciate you being on the podcast and would just love to learn a little bit more about you. What kind of brought you to this place?

J.J. LeVan (01:00)
Hi, thank you for having me. Well, Blake was diagnosed in 1998 and we had two children at that time. And in 1998, no one was talking about autism. We didn't have autism awareness. We didn't know what it was. And really what we had was a movie.

called Rain Man, which is now if you're in the autism community, it is, you know, the classic. It's a Dustin Hoffman and Tom Cruise movie. And, you know, by the end, you're just so disgusted with Tom Cruise. You're just like so irritated with him. And, you know, it was beautiful when the credits were rolling. But I hadn't watched it in a long time. I watched it recently after.

We've been doing this about 27 years now. So I watched it recently. I'm like, my word. Yeah, I think I've been Tom Cruise. And what a jerk. ⁓ it's been, it was hard to rewatch that and just more tears. But yeah, nobody knew autism then. And it was really hard. It was really dark. ⁓ The internet, they were just talking about things like the internet.

Elyse Scheeler (02:10)
Ugh.

J.J. LeVan (02:27)
And we didn't have any kind of connectivity. I had the library and a card catalog. And yeah, that's where we started this journey. And it was just like feeling around in the cave, in the dark, just trying to find something to get a hold of to help my kid. And frankly, it was really about fixing him. I really wanted to fix him. And all of the information we were getting was like, you know, you gotta work on him while he's young.

You got to work on him while he's young, you know, to really turn the corner on this thing. And so it was about fixing him. And I sort of was in that mindset in that mode of fixing for far too long when I should have been focusing on loving this little person in front of me because he is amazing and wonderful and the Lord created him with purpose. And that's

kind of the intro into that whole ⁓ starting the autism journey for us.

Elyse Scheeler (03:33)
Yeah, absolutely. think a lot of parents feel that. Like, well, there's a problem. You want to fix it. This is, know, it's just like if there was, you know, some sort of, if you have a blemish, right, you want to fix it. You want to put some medicine on it to fix it. And that's just, you know, I think that can be very challenging, but also almost a little bit of, you know, I could even see it, like as you're talking about, like you could feel a little bit of that pressure.

and that weight come off, once you realize, I don't have to fix it, we can just sit here and be and really, yes, there are still things that we're gonna be working on and all of those things, but let's just enjoy that. I love that you're able to be open and honest about that, because I think for a lot of families, that's something that even if they're feeling it, they may not be able to verbalize that. How do you feel like your faith was impacted when all of this was going on? Did you have a strong belief at the time? ⁓

J.J. LeVan (04:01)
Yes.

Yes.

Elyse Scheeler (04:30)
know, what kind of conversations were you having with God maybe when all of this was happening?

J.J. LeVan (04:35)
⁓ Yes, I ⁓ became a believer in Jesus at a young age and ⁓ it didn't when you get that diagnosis, it's blindsiding. We knew he was struggling. We knew there was something, but I just kind of thought he was really aloof.

And his dad's side of the family, they can just be very quiet. My side is rowdy and loud and just nuts and people are bursting out and singing and we're having a good time. And his dad's family was just very more quiet, more reserved, more kind of backward. So I just kind of chalked it up to, he's just this...

little person. ⁓ But he, yeah, as we were as we were walking into this, ⁓ the Lord seemed very far, very far away. ⁓ What are you doing, Lord? What is happening? I need help. I don't know what we're doing. I don't know which direction to turn. I need resources. I need help. ⁓

You know, at the time, it's like there was promises of a conference in the fall to help you on your journey to get your questions answered coming to a town near you. There wasn't, you know, and now we can just like get out our phone and get our computer and dive in and dig in some to find some answers. But yeah, the Lord seemed very distant ⁓ and I just felt lost.

And I believe I was depressed. There was no diagnosis of that. I would say I was depressed ⁓ and in that fixing mode and wanting God to fix this child and believing somehow or another, the Lord was going to turn this whole thing around. ⁓ But I was just going to be waiting in the dark a little bit longer. And it was just so hard. It was so hard. Yeah.

And so that's one of the reasons my heart is for the autism mom, the autism family, ⁓ you know, and even grandparents that I've been able to connect with. And it's just like, ⁓ have my heart. I know it's hard. I know it's so hard in that beginning, ⁓ especially in the beginning when you just don't know exactly. You have no path in front of you, you know, to travel.

Elyse Scheeler (07:25)
Yeah, I can definitely understand that. Is that kind of what brought you to write your book? I mean, I think that that, I am gonna check this out because I think that for a lot of the families that I work with, that this would be something that not only that the kids can hear, but I think sometimes, again, as grownups, we need to be reminded of God's love for us, for our children, for our families. Tell me a little bit about what brought you to write the book.

J.J. LeVan (07:53)
Yes, I was looking for a book, a children's book for him to enjoy. You know, he did connect with, you know, Cat in the Hat, and he did listen ish to the Beginner's Bible, you know, reading Bible stories. But I was not finding a book that connected to him, his day, his journey.

the challenges that he had. I'm like, I wish there was a book to let him see himself in this book and to know that God loves you. Jesus loves you too. And yeah, so that's kind of how it kind of came around to me. I need to write this book. And it took a while. I mean, you know, he is now 31. but we have.

for other children in our blended family, and it was very, very busy. And I'm in a season of life now that I can sit down and I was just really determined. I wanted to get this book written and share it. And yes, I believe this book is a layered book because the responses that I'm getting from families that read it are the moms are like, this one brought me to tears.

I needed this book. And then I've also got these little people videos that I, you know, they sent me and they're just burning through this book and they are just connecting. And I loved working with ⁓ James Newton because he was familiar with autism and together we were able to create some pictures, ⁓ you know, and be kind of specific about these pictures for these kids. And,

I think that it's connecting and I'm just so thankful. I'm just so thankful because I wanted those moms to be reminded as well while they're reminding their children that Jesus loves them, that God loves them and sees them and hears them through their day. And I wanted the tool to help me remember I need to speak these words of life into this little person. And yeah, that was really where the book came from.

Elyse Scheeler (10:17)
I love that we are all about speaking life here. that is that is absolutely amazing So tell me a little bit about I think I really would like to hone in a little bit We I have talked with a lot of moms and I know that some of our listeners have kiddos that have younger kids But I think that there's also this component of right children with special needs grow up into adults and sometimes You know, they may continue to have additional needs. They may be able to be independent. They may not be able to be independent Tell me a little bit about what your son is doing now and

you know, how life looks for him as an adult with some additional needs.

J.J. LeVan (10:51)
Yes. ⁓ So if you ⁓ have listeners who are familiar with autism, I just want to kind of describe us as a spicy autistic family. ⁓ We are spicy. Blake is home with us living here. He does go to a job center four days a week. ⁓ His Fridays are his sacred relax days. So those are very important.

Elyse Scheeler (11:05)
Mm.

Mm-hmm

J.J. LeVan (11:20)
But

working on independent life skills and always having that goal of finding that piece that's going to be able to work for him to have a more independent future. So, yeah.

Okay, I gotta get back to that question.

Elyse Scheeler (11:45)
That's okay. ⁓

J.J. LeVan (11:48)
What was your

Elyse Scheeler (11:49)
So it was just like telling me a little bit about what his life looks like now and how you're supporting him as an adult.

J.J. LeVan (12:00)
So I am Blake's independent provider. So we are working day to day with him and in transportation and teaching him those life skills day to day. And he is a big fan of cooking. ⁓ But we are also working on the workarounds of things that really cause him struggles like the stovetop in particular. ⁓ The stovetop is a huge barrier to his progress forward.

and his cooking skills. ⁓ So we're doing some workarounds. We're working on recipes with the air fryer, and we are working on recipes with those regulated tools and appliances that ⁓ you don't have to do all the adjusting and have these immediate crisis on top of that stove. And I've come to realize that working with ⁓ the groups that he is involved in, he's not the only one that's struggling with that. ⁓

Blake is very independent as far as dressing and hygiene and things like that. There is something that happens to him when we leave the house and we go out into the real world. It's very unpredictable. There's screaming babies out there, and he is also very anxious. And so those are the things that we are addressing and practicing. ⁓

working outside ⁓ of the home. And it's just funny because when we are at home, he is just a much different person, but it is. It's just a social disorder. He also struggles with language. He is somewhat conversational, a little limited verbally. ⁓ So it can be a challenge. And he has a C that he uses.

Especially like when we're in restaurants or out, the ordering makes him feel really anxious and he likes to use that if we go out. And I'm just really happy because it took a long time for him to get into that mindset that it was okay. We can use this little helper. That is okay. So that's kind of where we're at on this journey with him.

Elyse Scheeler (14:22)
Yeah, I understand that. So what do you do as a mom and as a single provider to make sure that your needs are getting met? And maybe you don't, because I've been doing some market research with some different ladies trying to touch base with them, and they're like, I just don't take care of myself. So if that is the case, we can talk about that further. But if there are some things that you do, or maybe there are some tricks or tips that we could share with those moms, especially of the moms

who have those adult children with those additional needs? Like what would your suggestions be? Or maybe for moms that are looking at like they're in transition, right? Those kids that are in that 17, 18, 19, depending on if they're qualifying for those extended services, once they're going to be done with those services, what would be some tips or suggestions or insight that you could give them?

J.J. LeVan (15:11)
Yeah, so at this point, at this stage with the rest of the kids are out in the world and doing their thing, I do have more time to enjoy the writing, the writing piece. And that has been wonderful. And that's a sort of self care, I would say. But honestly, I think it really comes back to soul care.

really ⁓ connecting with the Lord because we can still become dysregulated here, you know, ⁓ the frustration and the anxiety ⁓ that he experiences and just connecting with the Lord ⁓ in that soul care piece because that is for me ⁓ definitely self care.

Elyse Scheeler (16:03)
Mm-hmm.

J.J. LeVan (16:10)
So I'm loving using my Alexa and my audio, my audio books. I love the apps. love the devotionals. I love the ambient worship music. I actually kind of like the, it's called jazz hymns because I like that coffee house feel and I low keep that low and just going and it kind of keeps me.

Elyse Scheeler (16:30)
Mm-hmm.

J.J. LeVan (16:38)
in that frame of mind, I got to feel my spirit because it's too easy when my heart is depleted and overwhelmed. It's going to come out of this mouth, and I don't want that to come out of his mouth. You know, I want to encourage everybody to fill your heart, fill your spirit because ⁓ you know, the Bible says that out of the abundance of your heart, your mouth speaks. But there's also this verse that says, ⁓

And what's so great a forest is set from such a small fire. I mean, you know, when you are feeling hot in your spirit, when you are feeling that overwhelm, it does bubble out. And we don't want to do that to our kids. We want to again, speak love and speak that life over them instead of that dysregulated.

stressed out, burnt out, heavy feeling mom that I know that I can be and I just really need to, I just really need to connect with that. just, just daily and God's been really faithful in doing that.

Elyse Scheeler (17:54)
I love that. I have a question. Do you have a church that you guys attend?

J.J. LeVan (18:00)
Yeah, we go to a church here locally and we actually, we actually have been going to this church about a little over a year, just a little over a year.

Elyse Scheeler (18:10)
So my,

okay, my question is, is,

mean, whether or not your church does provide extra services, what do you think? So I know I've had lots of questions coming in too with like, how can we support adults and children who have, you know, who are neurodiverse, who have additional needs? Do, does your church have anything? I mean, I don't know if like require, you know, needs additional things or if they do, what do they do? And then the next part of that would be, you know, any suggestions that you would give to churches or people within church communities that are wanting to build supports for

children who have neurodiversity or autism or other things like that.

J.J. LeVan (18:48)
Yeah,

I don't believe, I haven't seen it, that our church has a disability ministry per se, but I know that the girl that is in charge of the youth, the younger, probably sixth grade and down, is very familiar and very good and grew up with special needs and she's doing a wonderful job and they have a huge.

ministry. I'm working in some different areas ⁓ of the church right now just because of our schedule, just because of Blake being here and our time frame that we do have the churches for families who have.

questions about a special ministry. I have been connecting with, it's called keyministry.org. They have a round table that you can hop into, ⁓ ministry leaders and pretty much whoever, to ask questions, to have just kind of a share session. And then they have these wonderful modules that you can work.

or you can go through and get information for your church for the children, but they have on their website a disability ministry locator. If you need to try to find one in your area, not saying that they're in all the areas, but you might be able to find one more close to your area. And we've been talking with people come to me and ask me questions.

Because I am connected with autism and I've been able to do a presentation about ⁓ autism at church just to get people familiar with what is autism, you know, and how do we address these needs and things like that. And when we did...

and it just went away. I'm so sorry. I was going, ⁓ my word, I was going somewhere.

Elyse Scheeler (21:02)
That's okay.

People have been asking you about ways that they can support kiddos with autism because you have experience with that.

J.J. LeVan (21:16)
⁓ it's, it's right there, hang on. my gosh, Johnna, I've got, I've got Pyramidaphos, Braidfog, it's gone. ⁓

Okay, disability locator. ⁓ okay, okay, okay. One moment. I've got it right here. Where are you? There it is, okay. We'll back up. I can do this, I'm sorry. It was gone gone. ⁓ it was gone gone, man. Okay. ⁓

Elyse Scheeler (21:57)
Yeah, no, you are totally fine. You are totally fine.

J.J. LeVan (22:07)
When I'm talking with people who want to know more about autism ⁓ or just some of our kids with disability that are coming into our church, ⁓ a few of the things that are the key points that I like to talk about are always presume competence in this child in front of you.

Even if they are not able to speak, even if they are not able to communicate effectively, always speak to them like they do. They understand what you're talking about. It's just respect, but it's also communicating belief in you as a person and that you little person

are valuable in your creative with purpose. It's just communicating something to that little person. And the other thing that I just think is most valuable, especially since my son struggled with communication for such a long time, that connect with this child and speak to them, not around them.

and while you're believing that they understand what you're talking about because so many times, and I think that some of us do it without even thinking. We are talking about this child within their earshot in a way that is not building them up in any way at all. And it is, it is so important that we in our spirit,

Believe this child is hearing every word that we are saying, and we need to make sure that we are communicating God's love and his just saturating ⁓ God's care for this child. And when we were like off in the corner and saying, I don't know what to do with her. She is just running back and forth and I have no idea. And I'm so frustrated.

with this kid and what are we supposed to do? Are we going to have to go get her parents? Because this is getting crazy. That's what that little person is going to take home from church. That's what they're going to glean. That's not what we want. That is not what we want. And at least the church ⁓ is in the middle. I truly believe the church. There's a tide turning.

that they are realizing that they have missed the boat on ministering to our little people, ministering to our families. And if you look at the status, like 85 to 90 % of our special needs family are uncharged. They're uncharged. And, you know, I grew up in church. I grew up serving in church. And it's become a little more difficult now that he is older.

and just some of the ⁓ frustrations that he's feeling. So I'm really more hands on with him in church. But when all of the disability journey came into my life, I didn't walk away. I kept going.

But I know for so many, it's just easier to keep them home. It's easier to stay home. And now since COVID, we've been able to ⁓ get online church and stuff like that. But I do really feel like we're missing a huge piece in community. And the isolation is real. The isolation is real. ⁓

That's when I wanted to get back to the key ministry thing that, you know, maybe a church locator or just tapping and to find resources that maybe you didn't think of to suggest maybe to somebody in your church. There's just a lot of leaders on there with great ideas and a lot of experience and just the idea share is just amazing on there and I just love it.

Elyse Scheeler (26:42)
I agree. And I think one of the ⁓ gals that I had on earlier this year talked about that she has a very small church. They don't have a special needs ministry. ⁓ But, you know, her son is pretty little and he wanted to come and he wanted to worship. ⁓ she was like nervous and it was going to be embarrassing. It was, you know, challenging. And instead people came up to her afterwards and were just like,

We just loved watching him worship and like what a gift from God. And I think that when those moms and dads, right, and families in general have that affirmation and they know that this is a safe place and to be able to go, and even if you don't have something special, like just having a place where you can go where you are accepted, that's kind of the idea, right? Is that we're here, Jesus is here to love on you, you know, we're here to love on you.

J.J. LeVan (27:07)
Yes.

You know, it was beautiful.

Elyse Scheeler (27:30)
to love on you too. As we start to wrap up, I'm just wondering, so you have really lived such a ⁓ transitory time, like a huge transition from the time that Blake was diagnosed to the time that you are now just talking about all of that technology and how things have changed. What do you envision or what would you like to see for those moms who maybe have their three or four year old right now and...

some things are happening where there might be a diagnosis in their future. What do you envision for the community and neurodiversity in the future?

J.J. LeVan (28:07)
Yes, from the beginning of our journey till now, I cannot tell you the difference in the neurodiverse awareness, the community. And it's every I feel like it's really you're hearing something about autism just everywhere. Now, I will say that in the future, I think that

There are divisions within the autism community. ⁓

really hope and I really feel in the future that we are going to find this piece that unites all of us Autism Family's Autistic People.

And we are going to be able to project to the world ⁓ how to embrace autism, how to accept autism. Because I think that autism awareness is, I think that people are starting to become aware. They are not sure what to do with that awareness, and they are not sure how to translate that into interacting with, ⁓ you know, our people in the community. And I think...

Elyse Scheeler (29:17)
Mmm.

J.J. LeVan (29:28)
I truly feel like I think that we're going to figure this out on our way forward. I do see and a part of that piece, I don't know, maybe it is through the church that the church is like, hey, you know what? We've been missing out. We're going to start opening some doors. We're going to start thinking outside of the box. And we want to make sure we're accepting folks with disabilities.

You neurodiverse little people were trying to figure this out and neurodiverse adults like these neurodiverse adult studies. We're gonna I think we're gonna figure this out. And it's a slow turning, but there's so much chatter in that community and it is so encouraging. Yeah. Yeah. But just to see it just as a snapshot of just seeing this timeline from

when we started years ago to now. It's, it is, it's, there's been a huge change. There's been a blossom and I really think we're going to figure this out. It might not be pretty, you know, starting. sometimes these things are rough starting and trial and error, but I think the education and the resources are starting to really trickle out. I really feel like we are turning that tide.

Elyse Scheeler (30:54)
I love that. Thank you so much for sharing with all of that information with us today. Before we go, can you remind our listeners where they can find you and any other ⁓ thing that you might have going for them?

J.J. LeVan (31:05)
Yes,

so you can connect with me on jjlavann.com and if you sign up, subscribe or whatever you want to call it, it's free. If you want to hop on there, if you want to comment recipe, I've got one we really didn't talk about the crock pot recipes, but I've got crock pot, we're gonna take that off.

Elyse Scheeler (31:27)
That's okay.

Do you want me to, do you want to talk about him?

J.J. LeVan (31:32)
No, that was like a whole other segment. It's fine. It was like a whole other segment. That was one of my giveaways, but I'm still giving away the book. So let's back that up.

Elyse Scheeler (31:34)
Okay. Okay. Okay.

Okay,

okay, so I'm gonna re- I'm gonna re-say. I'm just gonna say my little thing. Thank you so much for joining us today. Before we leave, can you just remind our listeners where they can find you on the socials?

J.J. LeVan (31:52)
Absolutely. You guys can find me at JJ Levan dot com. And if you want to sign up, subscribe and you would be receiving newsletters and stuff like that. But if you want to hop on there and comment book, I'll connect with you. And I'd like to send you a free copy of the paperback of he meant you to be you. So, you know, a little freebie for you guys. And I just really appreciate you.

Elyse Scheeler (32:16)
Thank you.

J.J. LeVan (32:22)
inviting me on here and letting me share about our kids because they are amazing and wonderful and that's something I want you to tell your children. You are amazing. You are wonderful and believe it in your heart too. Believe it. They are made wonderfully by God and they have a huge purpose.

Elyse Scheeler (32:47)
Amen, amen. Thank you so much for your time.

J.J. LeVan (32:51)
Thank you.