Fighting for Joy as a Special Needs Parent

Ken spends a lot of time away from home working on the pipeline in Alaska, but our podcast has become his lifeline. Focus on the family has helped my marriage by leaps and bounds. You give us so much meat and potatoes to think about. It just keeps us grounded, keeps me grounded. I'm Jim Daly. Together we can bring real hope to marriages like Ken's.

Give today at FocusOnTheFamily.com slash real families. Let me ask you to take a second to think about maybe an unanswered prayer that you have when you've asked God for what seems to be a really difficult, impossible situation. You're waiting for his answer. How do you keep staying with him?

How do you believe he's truly good even though he seems silent? We're going to take kind of a deep dive into answering that question today, especially when it comes to your parenting. This is Focus on the Family.

Your host is Focus President and author Jim Daly, and I'm John Fuller. John, it's so true. If you want to improve your prayer life, have children in so many directions, and today we're going to talk about that challenge from time to time, how it doesn't go the way we want it to go. We pray to God. We don't seemingly see the answers according to our agenda, and yet we've got to go through this struggle and this battle with the Lord to say what's going on, and are you really there? And I think people today are going to be blessed by our guest.

I would agree, Jim. And as you know, and many of our audience members might know, we have a special needs son, and he's presented a lot of prayer opportunities, if you will. And there's been a lot of progress, but there also have been a lot of difficult moments, and we've been praying for healing for a long, long time. And from what I understand from the book, I'm really looking forward to this conversation, especially in light of this month, April, being Autism Awareness Month. And our guest is Jason Haag. He and his wife Sarah have five children, ages 8 to 18, and you're going to be hearing quite a bit today about one of those children in particular, their 14-year-old son named Jack, who has autism. And Jason is an associate pastor and author. His book is called Aching Joy, Following God Through the Land of Unanswered Prayer. And of course, we've got that book right here to help you.

Just give us a call and we'll send a copy to you, 800-AFAMILY, or click the link in the episode notes. Jason, welcome to Focus on the Family. Thank you so much for having me.

That was quite a setup. You're going to deliver, though, through experience, I know. You know about pain firsthand in this regard, asking for a miracle and feeling like God's answer is either no or I can't hear you. What does that feel like? It's hard.

It's hard. You know, I grew up not having experienced any kind of crisis, really. You know, my parents were in full-time ministry. I was blessed on all sides. And I had a couple of daughters.

They were healthy. Things were going great. And I had all these aspirations for my son when he was born.

I had all these visions of what our relationship was going to be like. And for the first couple of years, it looked like it was going to be like that. And then he regressed. He lost his vocabulary. He lost his ability to really communicate with us and to connect with us. You know, Jason, I want to slow that down a little bit because that's emotional, I mean, for people to hear that. And to come from a family that was really stable, you guys went to church growing up, it sounds like you knew there was, or maybe assumed, there's kind of a formula here.

I mean, you live all the formulaic approaches. You pray together. You go to church together. You, you know, kind of don't do the things you shouldn't do in school.

It sounds like you were that kind of kid. Absolutely. And here's the big question, this if-then statement.

If, Lord, I do all these things well and I honor you, then you bless me. Yeah. And that means you don't give me any ripples in life and everything goes easy and I'll be really happy, but it's not that way.

No. I mean, I grew up singing, I'm inside, outside, upside, downside, happy all the time, you know. And that's one of the things you sing in Sunday school, you know.

And so I think it wasn't a spoken expectation, but it was this sort of expectation that, yeah, if I follow the Lord, things are going to be easy. And it's just proven that's not true. And so here you're a father of two healthy daughters. You're moving along. Your son is born. Jack is born. And he gets the diagnosis, I would assume, at an early age. It was moderate autism. Then he digressed and it became more severe. You had a night, I think you and Sarah, probably together, where you just threw your hands up and decided, I'm not praying for a miracle anymore. Talk about that evening, that night when you got to that point.

There was a church conference and we were there with a bunch of our church staff and there was a man who invited all of those who, you know, parents of special needs children to come forward. And I didn't want to come forward because, you know, a few years had gone by and I had prayed and prayed for, you know, initially for a miracle, initially for this grand breakthrough. And as I wasn't seeing that, I sort of lowered my level of expectation. And so I didn't want to go forward. I'm like, I'm good.

Everything's fine, you know. And when I went forward, the man who prayed for me, he just said, Lord, bring breakthrough. And when he said that word, I just fell apart because I realized, you know, I've got unfinished business with God here. I'm still holding on to disappointment. I'm still holding on to these dreams that I desperately want to connect with my son.

And I realized, man, I've got more work to do in my own heart and getting honest with God. For those that maybe don't have much insight into autism, why don't you describe that for the listeners? What is autism?

What is Jack's situation? John, you can pitch in there because Zane also has autism. Yeah, well, there's a common saying that if you if you meet one child with autism, you've met one child with autism.

So there's there it really is a spectrum. Children with autism deal with sensory issues, they can get on sensory overload. And then it leads to, you know, various things that socially sometimes can be very disconnected. Communication can be can be difficult.

So I'm not an expert on autism, but what it looks like in Jack is he's 14 years old and he's he's nonverbal. He has a handful of phrases that he uses. He deals with very high anxiety and obsessive compulsive disorder as well as seizures. So that that concoction of of difficulty, you know, that that that makes life really difficult for for him. And he goes through a lot. He really has to fight tooth and nail, I think, to be understood and and to to thrive. You really have to dial in to be a student of your child if they're on the spectrum, because it is so difficult.

There's not a manual that says X, Y, Z. There's no formula back to your point, Jim. And so you mentioned connection when you went down for prayer. Obviously, some of that was manifesting itself and you were not able to talk with or communicate well or hear Jack very well. Is that right?

That's absolutely right. I think over time, you know, initially I was crying out for the big miracle, you know, like suddenly we're just going to have this long, deep conversation and be able to talk about Star Wars and theology and all these things. And as I stopped, sort of I backed away from that a little more and then started praying for connection. I said, Lord, just let us be able to connect, let him understand us, let him get our relationship, our thing.

And yeah, that's that. That became the focus of my prayer. You know, in so many ways, being a father and again, for those just coming in, you have two daughters, your son is born. There is a special connection there between a father and a son, typically, and you end up developing, you know, high aspirations. If you played sports, you probably like I did. I thought both my boys would be football players. I mean, Trent is like 6'6", 210. He would have been a great whatever, but he just didn't have the desire to do it.

So I have those what I guess you might call normal father expectations. You know, we put him in Pop Warner and did all that. And finally, he came to me after ninth grade and said, I don't really like playing football.

And I had to, you know, pull that back and say, oh, OK, what do you enjoy doing? I remember the first time I got a phone call, he won an award. And I was like, awesome. What was it in elementary school? It was the chess club.

And he had won an award there. You know, that's great, but it was different from my experience. Partly that into your situation with Jack again, those goals and those ideals and then how you did have to ratchet down, obviously. How did you manage all that disappointment and then new expectations?

Yeah, that was a long process. I mean, I realized I had to just to give them up, sort of to let them go, not to destroy them. But, you know, I feel like, you know, in my book, I talk about our expectations are like propaganda films running in our head. And we, you know, where they come from, I don't know, culture, dreams, I don't know. But we can't necessarily do anything about them.

They're running there. And then when something goes amiss, you know, life takes a different turn. It's a matter of, OK, I have to completely recalibrate because none of that is happening.

So now what do I do? That was a long process. Let's move to, though, where Jack's diagnosis went from moderate to severe and you had other things going on in your life. I'm not sure where your wife, Sarah, was at in that moment, but you began to fall into depression.

Yeah. What was going on? Well, you know, I had Jack's diagnosis and my other son, Sam, was born with a heart defect that required open heart surgery as a young baby. And is he doing OK? He's doing great now. OK, good.

Yeah, he's doing great. But at the time we weren't sure what was going to happen, you know. And then we also had a dear, dear friend and ministry partner that was diagnosed with breast cancer at the time. And we just knew this time she's not going to make it.

They knew they couldn't treat it. So I basically I went from having this really privileged, you know, growing up of Christian parents, everything great, no crisis to three crisis at once. So, you know, that trifecta really knocked me off my feet for a while. And I grew distant and numb and not knowing how to relate with the Lord and not knowing how to relate with my with my son and then with my other kids. Like it, I just became really distant in that time.

And it was it took a long time. Lots of conversations with my senior pastor of just sort of drying out the sadness and helping me to acknowledge what was there to not jump to the right answer, but to acknowledge where I was right then to deal with those things one at a time. Our guest today on Focus on the Family with Jim Daly is Jason Haag. He's written this terrific book, Aching Joy Following God Through the Land of Unanswered Prayer. Certainly we would encourage you to get a copy from us here at Focus on the Family. Call us if we can be of any help to you if you're struggling in your relationship with God. If if what Jason has shared about being honest with God about your disappointments and hurts is something you're just really wrestling with, let us help. Our number is 800.

The letter A in the word family. You can get the book online as well. We've got the link in the episode notes. Jason, you mentioned this again, but I really want to explore this for the benefit of the listener. There was a night when you finally kind of said, I'm going to let God have it. Describe that, because, again, it's very therapeutic for those that are going through a variety of issues. They're upset with the Lord. They're holding back.

They think it's disrespectful. What happened for you that day where you cut loose? I went to a beach that there was never anybody at. And so I decided, all right, I'm going to I'm going to go and I'm just going to tell you everything that I think and that I feel. So I just marched up and down the beach and said, well, this is I'm upset with you for this and this and this. And yeah. And I yelled and it was ugly. And I didn't even use nice words. I was just like, Lord, here's what I have. And and just sort of gave it to him.

And like I say, there was no lightning that was struck. That's the first thing. I'm still here. And but one of the things I said to him that moment was like, we've followed you, Lord. Like we have followed you.

Like what in the world? We've done what you've asked us to do. And yet here we are. And and I really think sometimes we have something against God. And even if it's not even if it's not true or right, I think he desires that we that we at least tell him like he already sees it.

Right. And I think he's waiting for us to tell him just would you just be honest about this thing? Just give it to me. I'm a really big God.

I've seen a lot harder cases than you. So let's just talk about it. And I think that was the first step to let's talk about it. And it sort of set the tone for me of of being honest with God regularly and saying, OK, I'm not doing well today. And I'm a little bit upset with you because I thought that things were going better here, et cetera. And and so that's been what I've tried to practice since then.

Yeah. And I, you know, I deeply appreciate it so much because I think there are Christian leaders that try to project just a positivity, almost like they're fearful to go here. But this is real. This is where it's at. This is where people are aching. It's nice to be aspirational, but people need help down there in the well when there's not a ladder. You know, they need some perspective in their relationship with God to say, how do I find a way out?

And, you know, in some ways, embracing your circumstances and then trusting God is really critical. There's a I thought a really good moment. I think your family calls it the penguin incident. This will bring a smile to people's faces.

So let's let's get a little dose of happiness here. Well, like I say, I had I had shifted the way I prayed from give me a miracle to let Jack understand our relationship, let them understand that when I'm taking them to school and holding his hand like it's because I love them, you know, that when I'm running around, tickling him like, you know, let them understand that he's loved by me. And I just I didn't know if he did. But one day my wife had called me at work and she said, you've got to come home. Jack got this book from the school library and he's he's doing this thing.

You've got to come. So I come home from work and here's my son lying on it. You know, he's totally he's nonverbal, no conceptual language ever. And he's lying on his top bed with his legs crossed. And he's got this little like a book for two and three year olds, a board book.

He was he was seven at the time and has these two penguins on it. And he's laughing and laughing. And she says, come here, come here.

And I come over. I say, hey, bud, what you looking at? He's looking at this book. And the picture has a big penguin and a little penguin. And they're holding fins.

And it says, I like it when you hold my hand. And Jack points at the little penguin and the big one and says, Jack and Daddy. And then he flips the page and it's two penguins in the bathtub.

I think the big one giving one a bath. And this is I like it. We splash about. And he says, Jack and Daddy. And he is laughing. And page after page, it's it's it's our life that he's seeing. And it's Jack and Daddy. It's connection.

Right. And it was like he was telling me, Dad, I totally get this. I get us. I understand our relationship. He thinks it's hilarious. He's got this metaphor.

I am crying my eyes out here. And I think that moment changed everything for me. It changed everything. And and I've known since then he really does understand our relationship and he appreciates it. Well, I love what what God did there. How did that moment give you so much hope? I mean, because that wasn't what you were praying for, Jason. I mean, you weren't praying that he would just laugh at a penguin book because he gets it. What was the deeper thing there? Well, I guess I had already always been fixating on the big miracle, the big splash, the Red Sea opening up.

Right. And I was missing the things that God was doing on a daily basis. And my wife would see these things or like she could see the little progressions and the little victories God was giving.

And I was missing them. And at that moment, I felt like God was opening my eyes saying, look what I'm doing. Like, behold your son and behold the things I'm doing in your son. And I think we desperately have to stop fixating on the big miracle sometimes. And God's saying, look at the things I'm actually doing, the little things along the way. You're walking through the valley, but I'm giving you treasures in the valley and open your eyes to see them. Yeah.

Yeah. There's kind of a twin track of prayer, at least in my experience, where I am praying that big miracle prayer. I don't stop praying that. But there's a kind of a parallel track where, to your point, help me see the little things that you're doing, God, because I know you're working.

But it's really hard to jump from track to track and to keep them going at the same time. I found I can't stay in the place of like intense travail for at least in this situation. There are times where you can with Jax, I can't wait because then I start fixating on the things that he's not or, you know, where he's not rather than where he's actually at and embracing where he's actually at. And I think it's good to be able to oscillate or to take times to step back and just work with God in those moments. Jason, I alluded to this in the setup, but how do you reconcile then what you think about in heaven? I mean, none of us will be here forever. Jack included.

And so how does that give you either peace or uncertainty? One thing that gives me an immense amount of hope is that Jesus was so clear that the last will be first in heaven. And who, you know, I think of Jack and kids like him who have so often been last in our society. They've been cast off.

They've been pushed back. I think they're going to be celebrated as rock stars in heaven. I think they're going to be just highly honored sitting at the head of the table.

And when I think of Jack in heaven, it was the only time I was writing my book. I just cried my eyes out as I was imagining this of him sitting at the head of a table, not not held back by anything that he wants to be able to express. And us not being held back either from being able to understand him like all of those, all of those barriers being removed and to see all the things that have been on his heart for all of these years.

I can't wait to see that. Jason, you write about in your book how this has deepened your faith, that when this first started, you thought kind of faith wise, you're in a good spot, that your faith was strong. That's how you described it.

Growing up in a Christian home, all of that. But the irony is this unveiled some things for you where you realized you're weak. That is powerful. Describe it. Well, you know, when you haven't been tested, I mean, everybody looks good in practice, right? Like every football team, when they're running routes and there's no defense, they're like, wow, this looks great.

Right. And so that was me early on. And when I had to face this, I came, you know, you're right, I was weak. And I was afraid actually that I would completely fall apart. And God's been so faithful to not let me completely fall apart, but to be broken enough to recognize my desperate need for him and to recognize my desperate need for the church and for people to surround me and be able to lean on them when I was weak and to be able to really sense the presence of the Lord in the darkness, in those hard valley seasons, to walk with him much closer.

It has absolutely enriched my faith in ways I never imagined. How did you and Sarah do through all this? I mean, that can really destroy a marriage. So many marriages end up falling apart after these kinds of diagnosis, especially the ones that are more severe like Jack's.

You know, the Lord's grace was present. We were kind of the cliche couple of the dad gets very distant and depressed and the mom becomes the bulldog going after every therapy and all of these things and just buckles down. She becomes mama bear. She becomes mama bear. Yeah.

Yeah. And wondering where is dad and why isn't dad engaged? And so that was us for a long time and it was difficult. She had lots and lots of patience for me. And and, you know, to be totally honest, I mean, sometimes when, you know, when Jack is going through another regression, another hard time, it's still a temptation to go back there and I still feel that that old tug of despair, you know, sort of, oh, I'm becoming distant and becoming disconnected and I need to be jolted back in, you know, for her to she's even said this. You can't go back there.

You cannot go back there. I need you in the family. She's a good woman.

She's a very good. Hey, on the what I would describe more as the happier side of life with Jack. He loves movies.

Yes. I think you and your family, you did something. Describe that scene where you created a scene of one of his favorite movies.

What was it? Well, Jackie, he he loves watching movies. Something about the predictability of it because kids on the spectrum, you know, with all the stimuli and the craziness of the world that can it can sort of, you know, offset them and you get them off balance. And so movies, especially once he's seen a million times, are very comforting.

There's some predictability. So our family, since the very early days, has memorized, you know, big movie scenes, whole, you know, big dialog and sort of, you know, play them like like we're in a little play and he just sits and watches. And he'll just get this big, you know, megawatt smile watching this all take.

I mean, just a month ago, my kids, all five of them were in the kitchen cleaning up. It was a glory that in itself was a miracle. But he was in the middle of it. They put on music from the movie Ratatouille and they're all they're all talking in French accents going, special order, special order. He's in the middle of it all just beaming because they're connecting. They're saying, Jack, we see we know you love this here. You can't you might not be able to come into our world, but we can come into yours.

And this has been a thing they've done for years. In fact, we have a clip, I think, of your family. And we want to play that.

Do you want to set that up? This is my 11 year old son, Sam, who is a theater kid. And I think this is him doing a scene from The Incredibles.

Just just to make Jack laugh. Honey, what? Where is my super suit? What? Where is my super suit? I put it away. Where?

Why do you need to know? I need it. And Jack loves that. Jack loves it.

That was Sam and Nathan, actually, my eight year old. Oh, he loves it. He sits and is just laughing like, oh, you guys, I know the scene. I love the scene. Yeah.

Well, it's so cool to draw your other children into Jack's world like that. I mean, emotionally, how do they manage it? I mean, do they talk with you and Sarah about it? Sure.

Sure. And it can be hard. It can definitely be hard for them. We've had to to understand, like sometimes so much of our energy goes into him and to making sure he's OK. And I think they don't like to rock the boat. So there's definitely some intentionality we have to have with them saying we see where you are.

But you know what? They've also been so amazing at recognizing, hey, this affects me, too. And he's my brother and I love him. And they have become some of his biggest advocates. And I'm convinced they're going to change the world when you think of those character lessons that they're learning. It is inspiring. It is that they have that empathy. They're connecting. They're doing things for their brother. That's awesome.

This may be tough, but I want to end with a poem, at least a stanza of a poem that you wrote about your situation with your son, Jack. Can I ask you to read that stanza? Yeah.

Yeah. This is from a poem called A Reflection of Aching Joy. You are not a disorder, my son, not a blue puzzle piece on a clinical spectrum, but neither are you normal. You're a piece of God's own daydreams, a reflection of aching joy.

No, you're not normal. You are beloved. That's powerful. And that can apply. Now I got the tears, but that can apply to any situation, right? That's not just for those autistic kids that are struggling. No, it's for all of us.

Yeah. Jason, that is powerful. Thank you for being with us today.

Thank you both. It's really good. Listen, if you're teary-eyed as well, I mean, you probably should get a copy of Jason's book, Aching Joy.

Because again, even if you don't have an autistic child, you're going to have some issue in your life where you feel like God is not showing up. And that's an ache in your heart. And this will really help you in your journey.

Yeah. And I hope you've been encouraged to be honest with God. He can take it.

He wants to hear your heart. And here at Focus, we have counseling services available for you and a lot of other resources to help you wherever you're at. And as Jim mentioned, we of course do have Jason's book, Aching Joy, following God through the land of unanswered prayer. Whatever you need, give us a call.

Our number is 800, the letter A in the word family, or click the link in the episode show notes. And let me just say to those of you who donate and pray for this ministry, you're making broadcasts like this one possible. And we recently heard a great comment from a man who said, Focus on the family's radio program is the reason I am saved today. I used to listen while I drove a truck for 67 hours a week.

I couldn't go to church or anything. It was your programs that led me to Christ. And in the past 12 months, I think it was 305,000 people have dedicated or rededicated their lives to Christ.

And that's why we do this. Maybe you'd be willing to join our support team today and make that kind of ministry possible. Please, if you can make a donation of any amount, either a one time gift or if you can, a monthly sustaining gift. And know that you're making it possible for us to reach people every day through programs like this. And when you give, we'll say thank you by sending a copy of Jason's book to you. Donate and request that book when you call 800, the letter A in the word family. Well, be sure to join us next time to hear about the power of praying specific scriptures for your child. And I would say to that parent, first of all, you're not alone.

God knows exactly how you feel. He's watched us make the dumbest decisions, walk the wildest paths, and he loves your child more than you do. 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 more help you and your family thrive in Christ. And this assessment will help get you started. Take the assessment at focusonthefamily.com slash 7trades. That's focusonthefamily.com slash 7trades.