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Welcome to Mark & Friends. I'm your host Donna Leland. And today we're going to be talking about parents with children with special needs.

Our guest is Dr. Joe and Cindi Ferrini, and they have just written a book through Moody Publishers. It's called The Special Needs Parent: A Guide to the Life You Never Expected. Thank you so much, Joe and Cindi, for joining us on Mark & Friends.

Thank you. Thank you so much. Good to be with you.

Yes, great. Glad you guys can take some time and help us dig into this, because I know this is going to really hit a wonderful mark in the hearts of many parents who are walking through this season. People write out of their own experiences.

Could you share with us your own personal experience with a special needs child? Well, for starters, our son is almost 45 years old, so I think we have a little bit of a track record from which to speak and which to write, which we have for many years, and we're thankful for this opportunity. Things that we really recognized, even early on, was the isolation and the stress, probably the two greatest things that people with a child with special needs will mention. And we just realized that, you know, that can be helped.

We can give helpful suggestions to that. And because we, at the time, were speaking for family life around the country, we began to have a lot of people asking us, like, what's out there? And so we wrote before this book, we wrote another book called Unexpected Journey, and we were very real and very raw, and I think it hit a chord with the people who were reading the book. And so today this book is about the parent.

We want the parent to be given hope and help and some tools. So at the end of every chapter we have some tools that they can use to help better their situation. And that's kind of just where this all came from.

And when people at Family Life would ask us questions, often it was kind of tear-filled, you know, that they would just be like, I have nothing to draw upon, and we are just so exhausted and isolated and filled with stress. And so that's where the book came from, and I really do believe it's going to be a helpful book for their journey. You talk about embrace the place on this journey.

Explain this concept on what can be a very difficult and grueling lifetime of care. Help us to really feel that on a visceral level. Yeah, good question.

You know, embrace the place is really something that applies to everybody. I mean, we're all on this journey of marriage and raising children, and we go through different seasons of life. And when you're with a special needs child, you have to realize that those changes will come at you a lot faster and a lot different than you thought they would.

But nevertheless, you have to engage in that situation the best you can, and the best way we can phrase that is to embrace the place and to just engage as quickly as possible and address the real needs that exist and just kind of go from there. I think that makes sense for everybody, honestly, because I had four kids under five and a half back in the day, and I didn't start that whole journey until I was 33. So, you know, I was coming in here with a little bit of less energy, you know, because parenting really is a youth sport.

And it really is. Wow. So I was, you know, getting in a little bit in the game late.

So you're just exhausted. And I was 39 with my last. And you just have to say, Whoa, what did I sign up for? You know, and it's just this revelation.

Like, I got this. I got these four kids I have to keep alive. And what is that going to look like? And it was just this season of saying, OK, OK, I did sign up for this.

I'm responsible for them. And it's just you're in that moment and you just have to recognize, you know, I have to do this. That's what Embrace the Place is all about.

Just what you just said. Yes. You just really captured it so well.

Yes. And, you know, when anybody tells us about their children, every situation is different. Different to you, different to us, different to them.

And so when you are in the place of chaos and not getting sleep. And for some, you know, it's one of those things where something that happens. You have a child and it happens in a moment and it lasts so many years.

And you do, you know, launch them to their life and they come back and they go back out again. But it's different with a child with special needs in that they never leave. And often they're never launched.

And so when you embrace that place, no matter where you are on the parenting journey, you embrace what you're in for for that moment. And it's hard. It's hard whether you have all typically developing children.

And it makes it a little bit more difficult when you have one with special needs in that it never changes. You know, when we had our girls, there was that wonderful development of sitting up and crawling and walking that all took place pretty naturally. With Joey, it was very different.

So embracing the place for that was therapies and doctors and aides, occupational therapy, you know, all the different therapies, physical therapy, speech therapy. Nothing came easy. It didn't just, you know, next step just happened.

For him, we had to help him make it happen. And so if during those times we would have just said, you know, this is too hard, as many do, and then leave the marriage, if that happens, you really haven't embraced the place. We're not here to say, like, embrace the place and everything will be fine and life will go on as usual.

It's just that moment to moment that you have to do it because it is, in the special needs journey, it is for a lifetime. Yeah, the key word for a parent of special needs is flexibility. And again, nobody signed up for this one.

The way I like to think about this is that, you know, after you said, I do, you walk down that aisle with a set of invisible blueprints tucked underneath your arms. And upon those blueprints, you set off to build your marriage. And of course, the problem is that you both had two different sets of blueprints to start with.

But eventually you get to this one place where you kind of feel this way. This is it. This is the divine blueprint.

You have to build a different idea. And then here comes the special needs child. And that was not on our blueprint, I assure you.

And that required us to make some major modifications to our blueprints and our life in general. And as Cindi alluded to, the reality is that not too many people are going to modify their blueprint. They like what they set out to do and they basically will say things that essentially come down to, hey, I didn't sign up for this one, and so I'm bailing out on it.

And that's why 80 percent of people who are married get a divorce, is that this is too challenging and they don't want to go there. And so this is one of the primary motivators for us to write the book, was that we can appreciate the lifestyle, the life that a parent of special needs has. And it's just something that most people can't relate to, nor do they want to relate to it.

And really to say, too, if Joey hadn't been in our life, it would have probably been difficult for us to enter into the life of someone else, too, because people don't get it. Just like any other challenge that the Lord gives you, whether it's a divorce or a major illness or something, we step into that journey sometimes very alone. And so that's really one of the reasons we wrote it, to step in and come alongside these people, be their guide, help them along the way.

And often when we would speak not just with Family Life but other ministries as well, we would have opportunity when the time was over of our speaking just to meet with some of these people and just to hear their hearts, because sometimes you just want to be seen, you want to be understood, and we'll understand that because we've been through it. Well, with the comfort that we've received, now we're ready and we're able to give that comfort that people are longing for to other people, a word of hope. Now, how does or can a parent experience a vibrant and thriving life even as they are exhausted and serving this child? Well, you have to have time for fun.

You have to take time and date each other. Those kinds of things all have to happen. Do they happen easily? No.

We do talk very much about getting a team of people around you that will help you, whether it's paid staff or family or different programs. Certainly here where we live in Cleveland, Ohio, we have what they call a waiver program where we can get respite care. If we want to go out on a date, we can choose our respite caregiver.

Fortunately for us, we have people in the system who provide care that we already know. For us personally, we probably would really want to know the person, not just take somebody that was on a list. I mean, if that was my only choice, I may have to do that.

That's not saying you shouldn't do it, but you'd really want to vet those people as they've already been vetted, but for your own situation, too. Can they handle your child? Can they handle what is going to happen in the time that they have with them? The other thing I would add, too, is we talk a lot about some different words like capacity, endurance, and resilience. I think those three words also go a long way to answer that question.

That doesn't come naturally, does it? As Cindi said earlier, one of the biggest issues that we see with special needs parents, special needs families, is just this isolation that takes place in their lives. They isolate for a lot of good reasons. They isolate.

They just kind of go off on their own, and that's not healthy, as you know. This book, another motivator for the book, was to try to create a sense of community for them so that they realize that they're not alone and that there are people who can come alongside of them. In the book, we provide a number of several, many resources that someone can connect to to help begin to address this issue in their life.

I think of Joni and Friends. Can we just not say enough about her and the beautiful organization that she has developed? Amazing. Absolutely, and I would name another one, Key Ministry.

Key Ministry comes into churches and helps provide the helps that they need so that families like ours can be in church because often they don't know what to do with us. Sometimes they aren't even prepared with the proper ramps or even a buddy system for a child to be able to let their parents sit in church together. For years, we divided and conquered.

I'd have Joey in the car and drop Joe off, and later I'd come pick him up, and he'd take Joey home. It just took time for our church at the time and other churches to get on board with this. We appreciate all that we're seeing because there are so many wonderful things that are happening.

But it's important that when you know the road ahead of you is for a lifetime, you need to begin to start getting people around you that are going to help you because burnout is real. And if you don't get that help that you need, and as I said, it takes time, you're going to be the one to suffer. And I have to say in 45 years we have developed that team not just medically but also just people who love on Joey.

Back in the day when Joey was little, I will admit, we hardly ever got invited anywhere that he was invited. And he wasn't a real disruptive child as some are, but he had enough of his situations that may be questionable, like how will he respond or how will he act. And so now as we're older and he's grown up and he's quieter and more mature and growing older like we are too, we have many more people in our life who do invite us and say, bring Joey along because he does live with us.

So if we are to be invited somewhere, we have to understand, and others have to understand, we can't leave him at home for hours. We can take a walk in our neighborhood. We can leave him home for a short time if everything's kind of all set for him, but we can't leave him alone.

And so you need to build that team, and it takes time. And we're here to tell you that it can be done. We're here to tell you that there's ways it can be done, and then you have to implement them.

And then also the idea too, what works for us might not work for you, so we have ideas like think outside of the box because every situation isn't the same. Yeah, and I would just add to what Cindi just said is that the reality is that there are a lot of unkind people out there with unkind words. Have you experienced that? Many, many, many times, especially when Joey is younger.

He was accused of being autistic, severe autistic. What's wrong with him? Why does he make noises? What's wrong with that kid? And we just stand there like that's my son that you're talking about. And the reality is statistically one in three households have a member with a disability.

And the sad reality also here for you, Donna, is that 47% of them have left their church because their child with disabilities was not welcomed or included in that church body. And that has to change. That's heartbreaking.

Yes, and sometimes not just unwelcomed, but asked to leave. Asked to leave. That hasn't happened to us, but we know people that it has happened to, and that makes it really difficult.

But the beauty is that what we are seeing is there's many ministries coming alongside the families with special needs to help in so many of these areas, and we're most grateful for that because, again, every situation is different. And as we have written in each of our three books that are towards special needs, we don't just talk about our situation. We give maybe a little glimpse into it so people can understand, but there's so many different needs.

We've interviewed many people that become a part of our book so that other people can read between the lines of each story and be able to say, oh, I get it. You know, that's me. That's where I'm at.

And so that's really our desire to have every single person that reads the book be able to recognize that that's them. There I am right there in that chapter. And it's a long journey that we have, and if our child does live, either outlive us or as long as we live, pretty long, Joey's 45, it's going to be a long journey which we have to address all of these topics.

And so along the way, we're here to help, and we hope that it will help. This book would also, I think, be really good for just the church to get in there and hear some stories and think about what can we do to come alongside and be a support. I know one thing for sure, we had a child in a wheelchair, and just to approach him and speak with him was just so honoring to the parents, and they felt just very honored that you had recognized them as a person.

They're sitting there. You don't talk over them. Oh, how's Joey doing? No, you don't talk about him.

You say, Hi, Joey. How are you? And there will be a response. He's listening.

He can understand and just engage them as people. Exactly. We love that.

We love that so much.

[Music segment: "Blessings" by Laura Story.]

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