Don't Give Up: Raising a Child with Autism

If you have a child with any diagnosis, any special needs diagnosis, any mental health issues, autism, you have been chosen by God for a different life.

You know, it's not that this thing happened to you, it's that he chose you to live a non-traditional life. That's Julie Hornock and she's our guest today on Focus on the Family as we explore some of the unique challenges of raising a child with autism. John, for parents of any child who has special needs, life can be a difficult and heartbreaking journey at times because no matter what qualities or talents your child may possess, they will always be viewed by the world as different, right?

They're not like most others and oftentimes as less than normal. Another factor is how the diagnosis impacts you as a parent. The grief you'll experience over the loss of dreams for your child and family. And John, we've mentioned before on this program how you and your wife, Deanna, have gone through such challenges with your son, Zane.

Yeah, yeah. He was adopted at nine months, diagnosed at two years with autism and some other challenges as well, physiologically. And we have gone through everything you just talked about, the shifting sands of expectations and what is normal and how are we going to deal with this? And there's a lot there and it's been quite an incredible journey. Well, because of that, you're going to jump in probably a lot more today to give your perspective in Deanna's.

But let me clarify some things for our listeners and viewers on YouTube. Autism is still very much misunderstood in our culture today. One in every 44 children is diagnosed with autism.

That is a huge number. And there's a wide spectrum that children are diagnosed with, high functioning to very impacted with autism. Finally, we in the Christian community should be the first to understand and embrace these families that are dealing with autism and other special needs too. Matthew 25 makes it clear when we serve and care for the least of these in our society, it's the same as serving and caring for Jesus Christ. Let that sink in for a minute. So that's why this topic is so important for us today.

Yeah. And we're so honored to have Julie Hornock here in the studio with us. She's an author, a speaker, blogger, and co-founder of Labeled and Loved, Lifelines for Special Needs. And today we're going to hear a lot of personal stories. And some of those are captured in a book that Julie has pulled together, United in Autism, Finding Strength Inside the Spectrum. This is a collection of stories about families. And I think it's a really great resource for every parent to kind of view their child and this community through.

Get your copy by clicking the episode notes or give us a call, 800, the letter A and the word family. Julie, welcome to Focus on the Family. Thank you. I'm thrilled to be here.

It's good to have you. Describe for us what Lizzie, your daughter, was like before her diagnosis. What was going on?

Did anything catch your attention? Well, it's almost hard to tell because I had an older child who was a very busy, busy child. And so she was typically developing all the way up until about nine months. And if I look back at her baby book, I can see some things that kind of raised a red flag and just that maybe she was, she would flip through books just for hours on end without really looking at the pages, just sit there.

And she just didn't require a lot from me. And that was very, very different than my older child. I mean, that's really important, especially for moms who have young children to be able to diagnose. I mean, it's not always going to turn out to be autism, but to be aware.

It's so important to be aware. So as a young mom and even your husband, Greg, were there conversations about that doesn't seem exactly right? Well, no, there weren't conversations about it because it wasn't so obvious. And we really didn't start to seek help until things became pretty obvious. Because we just thought we were in a family of like, extroverts, there's lots and lots of extroverts. And I thought, oh, you know, this little girl doesn't need as much attention. She likes to be by herself.

Maybe that's what an introvert is. I didn't know. And you mentioned that nine month mark, is that when it was more obvious? Or how old was she?

When you did say, we need to probably talk to somebody? Yeah, we around nine months, she kind of stopped noticing the world. And so before then, she had been developing, just typically, you know, sitting up, crawling, and she used to do this cute little thing with her brother where she would crawl and crawl and crawl, and then she stopped and look back and like, let him catch her.

Right. And then one day, it just kind of stopped. She just stopped looking up. And so she would crawl really, really, really fast. And then she slammed into the wall.

And we just thought, isn't that so funny? You know, as a parent, we didn't really put it together that it was something more that she was truly not looking up in the world. And that was a sign that she wasn't observing what was going on. And then from there, it was about a year's process of where we just saw her kind of spiraling down. So she, after that started waking up from her naps, just clenching her fists and sweating and crying. And then she started to bang her head on the ground, flapping of the arms, she began to walk on her tiptoes, she started lining up all of her food, and then began lining up her toys as well. And then I think the thing that was just the hardest and forced us to get some help was that she truly just wouldn't answer to us like she went inside herself almost like where her eyes glazed over so she could be standing right by me. And I had no connection to her. I would be screaming her name and she wouldn't that had to be so difficult for you and Greg. I mean, trying to manage this. There's not at that point, you haven't really seen the doctor, there's not a lot of support around you. All these fears are bubbling up.

Yeah. I mean, what take us to that emotion and what and I think to understand that, I mean, we just, we were 28 years old, and we had really truly been following just this classic traditional lifestyle that I think you are almost taught to seek. And so we had gotten married, we had successful jobs, we had our first child, I was able to stay home with him because my husband was doing well enough for me to stay home. And we had just built our dream home because my father is a builder and I was able to design and then build that home. And so really, we had a great supportive family, a great supportive church. And I felt like we were kind of in that bubble of running towards happiness and running towards comfort. And I think often, you know, we set that as a site, you know, like, if we're doing all those things, and we're gonna have a great life, and we kind of thought we were on top of it all.

We're like, we got this beautiful family, we got a boy, we got a girl. And so then, when things started happening and going downhill with Lizzie, it was, it felt so out of control, you know, and just like, I was taken back and didn't know what to do. And I had never met anything that I hadn't been able to fix or anything, I hadn't been able to work hard enough to, if something didn't work as I was working for it, I would just stop regroup and work harder. And it just didn't work like that for autism. Let's spend a moment there with that fixer mentality. It's completely reasonable. I think every reasonable person, every reasonable parent would have fallen into that mode. It's not a bad thing. But how did you manage trying to over fix if I could put it that way?

I didn't do well at all. Yeah, I mean, I'm a fixer by nature. And I really, we jumped in very strong with 30 hours a week of therapy, running it out of my house therapists coming in and out. We had behavioral therapy, we had 30 hours, 30 hours a week. That's a full time job.

Practically it is a full Yes, it is a full time job. And, and doing all those therapies, you know, that was my complete focus. And I think the problem with being a fixer like I am is that that assumes that I know what is right, and what is wrong. And, you know, lots of times the things that I think are wrong, which in my mind, autism was wrong, and I was trying to fix it and go back to that traditional lifestyle. And that just wasn't God's plan for us. And what I thought was wrong was actually what God was going to use. And I think that happens a lot in families.

Yeah, john, you can resonate. Well, I'm tracking because at about two years, we had enough concern working through some of the attachment issues through the adoption, and just the head banging, the screaming, the lack of communication, the, the sensory pushback in every sort of way, that we had a diagnosis from a neurological specialist in pediatrician work. And he basically said, he's got autism, I'll see you in a year. And that didn't sit so well with us, because for us, the heart was, well, we're benchmarking against five other kids.

He's struggling. What is it? What's the puzzle to unlock the mystery within? What Julie was saying, I was thinking of Dina, because you also had 30 hours. She was a strong mama bear. And we had three therapists every day coming in the house. We had occupational speech, all sorts of therapies.

And yeah, homeschooling five other kids. It was a chaotic time. And and it wasn't, we weren't overwhelmed at the point of sadness. We were just sad for him, because obviously, there was a struggle within that we couldn't figure out.

Sure. And that's part of what takes place. Julie, you also talk in the book about the impact on your marriage, you and Greg, and what that looked like. And that's heartbreaking. But it's, it's kind of like what you got to do in the moment, right?

There's no other way to take this hill. Describe what was going on for you and Greg. Well, we, my focus was completely on Lizzie. And like, I was completely researching, connecting with other people, just doing anything and everything I could for her because, you know, when I'm when a mother's when your child is hurting, I mean, dad, too, you're hurting and just that pain was so intense, watching them hurt.

And so all of my focus was on her. And then what was left over went to my oldest. And I just I didn't have the love to give.

And I didn't have anything left for him. And I think what was so wonderful, and I'm so grateful for is that he had made the commitment to us, you know, and to God, that he would stay and take care of our family, no matter whether he felt loved or not. And I think that's really just incredible that even for years of not feeling love for me, probably, that he just stayed, he put his head down, he went to work every day, he provided for our family, he loved me, he loved our kids, and it wasn't contingent on me doing anything back and loving him.

That's so unusual. So many families with special needs kids struggle in the marriage to the point of it breaks up, right? Because you're giving everything you can to those kids, right?

I think that divorce rate is around 80%, roughly, as you did the research. Let me ask you, Julie, the good days and the bad days. So you get the diagnosis kind of like where John and Dina were at, you know, the doctor says, Okay, this is what we think your child is struggling with. And then come back in a year. I mean, that was your situation. But what were the good days like? And what were the bad days like?

Well, the good days, I had to go through a lot to get to the good days, that because my focus was so intense, and so strong, and the good days were the days where I could slow down and just appreciate her for she who she was, where she was. And I think we don't do that enough. You know, we're busy trying to get to this end goal. I can't wait till she speaks. I can't wait until, you know, she can go to school. I can't wait till she can play with a friend at recess.

We always have these goals because we're trying to go back to these traditional benchmarks. And the good days are whenever we can talk, stop, take a breath and just be like, look at her. She's funny. You know, or look at her. She just did something so adorable. Look at her.

She looks beautiful in that dress. You know, it's just slow down and be like, I just adore my child exactly how she is. Julie, I was intrigued by something you've said, and this is it, that you cannot actually grieve until you realize autism is forever.

Now, before people jump on that, as a Christian, you can pray, you can ask God to heal your daughter, we get that we understand that. But differentiate that that realization that that's true, I'm sure you and your husband prayed that God would intervene. Of course. Right. But then move to that idea of grieving. Autism is something you deal with for a lifetime.

Yeah, I mean, absolutely. In my head, and we were veering off course, and it was going to be two years. And so I had in my head, she was diagnosed at two.

And I don't know what was in there that I thought, we're just going to go strong, we're going to go hard for two years, and we will fix this and she'll be back to typical, and by four, and so when four came around, and she was really not even communicating with us at all, she had some language, but wasn't able to have any connection still, we had no connection. And I think it really hit me hard and where I went from the place in my mind of taking it from parent, because so when you are a parent, and you know, you're gonna become a parent, you parent for 18 years, you send your kid to college, and then you put them off into the adult world and you enjoy all those phases. But you go from parent to caretaker. And in lifelong caretaker comes in with that where you realize this child isn't on the same trajectory is not she may not go to college, she may not ever have a family. And so you have to really work on that.

And for me that came in just a really, I was just struggling really, really badly. And my mom was I just have a great, really helpful mom. And she came and she was helping me with every thing with the kids. So she took the kids to school and she looked in my fridge and she's like, Julie, you know, you got to get food today. Like that's your one job. And so I was like, Okay, I'm like, I can do that.

I will do it. So I like had moms won't understand us. But we have like a mommy uniform, right?

Like we have this, we have this like these flannel pajama pants that are solid color so we can wear them out and not get called out. And so I went to Walmart in this out my mommy uniform. And I got all the food and I got it home. And I was like really proud of myself because it was a lot on me. And I put it on the counter. And that was just all I had to give. I mean, it was it. And so I lay down on the couch and I willed myself for the rest of the day to just get up off the couch and put the food away.

And I just couldn't do it. Because I was grieving. And so you realize, when you get to that place, my mom actually got home that day. And she's like, what has happened here? You know, all the food had spoiled.

And that was sitting on the counter that hadn't gone and gotten at the store. And it's just that place of greeting where you really need to take it and realize, okay, this is lifelong, your life is going to look completely different than you thought it was. And you have to actually take what you thought it was going to be and grieve it. And then the loss of what you thought it was going to be a loss of what you expected. It was never real, but you still expected it. And it was your hopes and it was your dreams and it was what you thought. But then you can go into and begin enjoying and find the joy in this new life. Once you grieve it and accept it as a lifelong diagnosis in your work and obviously writing a book.

Do you meet other young moms who don't grieve it? Well, and they're just like plowing ahead, they're just going to be tough. And but you can tell that moment that brick wall is going to be there.

How do you coach them? Yeah, I mean, so this is something that actually made me want to go and interview families all over the world is because I noticed just within my circle of moms, my circle of autism moms that there were women as they went, they were either getting bitter or better. And so they were either taking what life was had given them to make themselves better to better the world, or they were just getting angrier and angrier. And they would fight harder.

And it was like they were spinning. And so my heart just breaks for the mom who is getting bitter because I know I get it, I could have gone that way, you know, you don't always know how you're going to react and what's going to happen. And so I thought, I'm just going to compile these stories that can inspire them of moms that are have gotten better.

And how can they do that. And so I just picture a mom having like a really bad day or in like getting a whole sleeve of Oreos and just taking a break and reading one of the stories and just being inspired. And that's I just I share with them just to go stop and just look at the people that seem to be okay in it and ask and find out how why are they doing okay. And it really does all come down to that acceptance. Yeah, yeah, that I mean, it's so well said, Julie, you do talk about hope for parents in this situation. There's three words that you often give as advice and they are support, surrender and belief.

We're kind of touching on those. And it's a purpose a beautiful purpose that perhaps God has given you. Right. So explain what you mean by each one of those support, surrender and belief. Well, finding support, but just not not just for the child, but also for yourself, because that sometimes it's sometimes what we miss is that support that we need to get for ourselves. But the word I hear from parents most when they get the diagnosis is that they feel helpless. And I think it surprises me, but I also felt very helpless. And so we think, oh, support so easy. It's all out there.

You know, everyone knows about it. But it's like your brain gets really fuzzy and you click into either fight like your wife and I did, or you click into fight or you click into freeze. And so it's just not as cut and dry. And you really need to be reaching out to community and just finding the people that can guide you because I do feel like God really and truly just provides the people. And he provides that's the most I hear it from every parent I've ever talked to. And I've had that experience in my own life that if we ask, you know, God's going to send the right people to guide us. And so finding that support within your own community. So you can sit face to face and you can have a conversation with somebody who gets it.

And also somebody that probably has a little more knowledge than you. Yeah. And I think that idea of being in the valley, it's okay. Yeah.

You know, don't don't grieve your grief. Yeah. But, you know, the idea of plowing through that, learning from it, understanding it. Okay. So that's support. What's surrender?

Yeah. So surrender is doing that exact thing that we talked about. And so that you don't get better. So it's going back to I'm going to surrender the life that I thought I was going to have. And if you have a child with any diagnosis and any special needs diagnosis, any mental health issues, autism, you have been chosen by God for a different life. You know, it's not that this thing happened to you. It's that he chose you to live a non-traditional life. And that is exactly, you know, what you should do and find the beauty in it.

But you can't do it until you decide to grieve that and then to move forward in the new life and just take joy in the things that you can take joy in. And the obvious one is belief. I mean, what are you believing at that point?

Well, believing that your child has a beautiful purpose in this world, because I remember I was kind of hashing it out with God. Just, you know, I can't believe we haven't gotten further. I can't believe she hasn't progressed more.

I can't believe we haven't been able to move forward, you know, just grappling with him. And I was in the car and I just remember him saying, you know, it doesn't matter. There is no better life. Like there is doesn't matter if you go to if she goes to Harvard or she ends up in a group home. The best life is the one that I have for you. The best life is the one that my path for you is on. So if I choose to put her in a group home, and that's where she ends up and that's where she's going to be, then you're going to be able to bless people in that scenario. And she's going to be the happiest in that scenario. That's where I'll use you in ministry, or same thing. If she goes to Harvard, then that's my plan for her.

But there's no like, we want to put these benchmarks in the world like, oh, if you go to Harvard, you're up here, then, you know, maybe just normal college, then maybe like a community college. And then down here, you know, you have the people that we are supposed to help in the world, you know, and it's just doesn't work like that God has such a beautiful purpose for each and every one of our kids, whether they're wearing diapers, and they're an adult, or whether they're out speaking to the entire world, he, there's nothing missing in our children, you know, that he loves them just as much and has given them that purpose. And I think I see what's so neat. Even in our churches, I see people that have their walls built this high, you know, so high, you can't reach him.

But you know who can reach him as a child with special needs. And they watch them praise Jesus in their walls come down because he gave them it just it's childlike innocence that is so beautiful that, you know, we can look at that and we can see God, I can truly see God in my daughter. Dr. Darrell Bock Well, and I think, you know, for those of us that may not have that extreme situation, it's hard to even understand because we haven't gone through quite like that, that we were trying to figure out, okay, she really being honest with herself here that you can get to that point. So I appreciate that, that, you know, perhaps suffering comes in all forms. And in this context, it's that realization that this is what God wants me to do. And I'm going to do it. I'm going to honor the Lord in it.

Let me end with this, what I think is a pretty tough question. For many years, you struggled with a heartbreaking question for the Lord, wondering why your daughter had to suffer in order to teach you to trust and surrender, kind of what we were just talking about. And how has God answered that prayer for you? Dr. Angela Calhoun Yeah, she really, she, I could see from the very beginning that it was, I needed work, you know, I knew I needed work, I wasn't very compassionate, I wasn't looking at others and figuring out how I could help. And so from the minute she was diagnosed, we started going through this, I could see it just really changing my heart and opening my eyes to others pain. And so I got that that wasn't ever something I really had to work out with God, I just knew what he was doing. I knew I knew I needed to be crushed.

I truly did. But what I couldn't get over, you know, is like, why God does she have to be in pain? Why is she banging her head in her physical body in pain? And why does she have to struggle so hard to speak?

Why? Then later on, as we're getting into middle school into high school, you know, she just wanted a group of girlfriends just to hang out with all the time. And just the sadness behind not being able to find that was really, really hard. And so watching her suffer, you know, I was suffering and I'm like, you're changing me, but you're doing it through her.

And that was just so very difficult for me. But she graduated from high school last year. And she came to me and she said, Mom, I want to share Jesus with the world. And it was like a light bulb, you know, I was like, Oh, my gosh, like, this was never about me, as the parent, it wasn't about me being crushed and changed. It was that he had her going through these things so that she could live out her purpose in this world. And so, you know, if you're sharing Jesus with the world, you got to know how to not have people liking you, you know, and if you're sharing Jesus with the world, you have to know how to, to fail and to get back up and to work hard and to do those things that come with a lot of trial and error.

And she's already had it in her young life. You know, so it was never about me. It was always, he was changing me, but he was changing her and preparing her as well. And I so appreciate that.

It's a byproduct of your situation. It's not because the Lord didn't give you Lizzie so that you could be changed. Lizzie is.

And that's such a better way to look at it, you know, and I appreciate that growth that you're expressing. What is that update with Lizzie? What's happening with her? She graduated high school. She graduated high school and she is now in college living on her own, living in the dorms, doing really well in school. And, you know, there's still a whole lot of struggles and ups and downs and working to make friends, but she's really doing well.

And I'm so proud. And, and it gives me, I just can't believe we're here to be honest with you again. It gives me the opportunity because community is so important and finding community for us is important. And there are non-profit Labeled in Love that we're doing that where we're connecting moms with moms so they can be each other's lifelines and to move together in this journey because we are not meant to live it alone.

I mean, God gives us people so that we can build and be better and we're not meant to be alone. Labeled in Love, we'll link to that so people can find it easily at our website and that'll be a great way for folks to respond. This has been so good. I appreciate your heart. I wish Greg were here, but you represent the family well.

Thank you. I mean, thanks for doing the journey and writing this wonderful resource United in Autism. And you know, as we normally do, if you can make a gift of any amount, we'll send you a copy of the book as our way of saying thank you for being part of the ministry. This is touching a lot of people and I would encourage you, if you're not living in this space, just open your eyes to those around you in church. Ask your pastor who might be dealing with this and get a copy for them. What a great ministry because they may not hear the show, right?

You're listening to it so God has a purpose for you and listening to it as well, even if you're not in the middle of this. And again, Julie, thank you so much. And John, thank you for sharing your thoughts today.

Well, we're grateful for the opportunity to have the conversation. Let me encourage you to get a copy of the book United in Autism along with the CD of today's conversation. Just stop by the episode notes or call 800, the letter A in the word family, 800-232-6459.

And as Julie was saying, we're not meant to walk this journey alone. And if you're in need of support, give us a call here at Focus on the Family. We have caring Christian counselors on staff and it'd be a privilege to set up a consultation for you.

The number again is 800-232-6459. Tomorrow, Kathy Cook will describe why resilience is one of the most important traits you can foster in your child. On behalf of Jim Daly and the entire team, thanks for joining us today for Focus on the Family.

I'm John Fuller inviting you back as we once again help you and your family thrive in Christ. I'm here asking people how they could both give and get. I don't know, maybe love. Yeah, you could both give and get love. True, but it's also possible with a charitable gift annuity. You get a secure source of fixed income and a charitable tax deduction. Plus, giving a charitable gift annuity to Focus on the Family helps families thrive for generations to come. I love that. Find out more. Go to focusplannedgiving.com. That's focusplannedgiving.com.