Coming Alongside Special Needs Families

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Welcome to Mark & Friends. I'm your host, Donna Leland, and we pick up where we left off with the conversation of Joe and Cindy Ferrini. They have written a book called The Special Needs Parent, A Guide to the Life You Never Expected.

So grateful for their just candid approach to helping us understand how to really minister to the parents of a special needs child, as well as the child. Cindy helps us really understand her 6'4", disabled 40-some-year-old son, and how does he process life. His verbal skills are very low, and so while he can take directives and understand a lot more than most people would think that he can, he's not able to express it so well.

So if you were to come up to Joe and say at church, good morning, Joe, he would say, hi, how are you, in a really deep voice, and that's pretty rote. He does that pretty faithfully. But then if you know what he likes to talk about, which are his sports teams, you could really get him going.

You might not understand it, we're there to interpret, but we're very gentle about it. So learn about that person. Ask the parents, maybe separate from the child, until you understand what do they understand, what do they not understand, but ask the parents, how can I address your child? Or what is the best way for me to do such and such? Just reach out.

Yeah, absolutely. We are so taken back when people are kind to him that sometimes we're left speechless in terms of how to respond to that. It is getting better.

I mean, 45 years ago, it was a different world in the special needs community. I mean, it was much more difficult back then than it is now. People are becoming more aware of the reality that these people do exist, and the more that they acclimate to that reality, the more receptive they are to engaging with Joey.

These people are our heroes, if you will, that would step down, look down, stoop down to the talk with Joey, I think. It's just so heartwarming to see that, and again, I'm taken back by it because I just sometimes don't know how to handle it, that people are just trying to be kind to Joey. It's just so refreshing.

A lot of times, people with special needs, their rationale and their ability to comprehend things in a clear way are not there. Sometimes people will have said to us, if you just did this, or if you just did that, but their comprehension skills or ability to continue to do things over and over in a realistic way are not like a typically developing child. Sometimes we have had people say, if you just disciplined Joey differently, well, if I would have touched his hand, smacked his hand away from an electrical outlet, which I did at one time, I even remember my mom saying, I don't think he's understanding you.

That was exactly the truth. He did not understand that what I was saying, like don't touch that. I could say that to him, but he was too little, even though he might have been five, he was too little minded yet at that time.

Now I can say something like that to him because we've had years of growth and experience, but people have to understand that sometimes their wonderful opportunity to share what they did with their child that worked may not work with ours because their mind is not working the same way. Actually many of the brain differences that people have can all, a lot of times, almost look like Alzheimer's. Sometimes people respond almost better when we say, Joey is like a person who has Alzheimer's, only that's not his diagnosis, but he has many of the same characteristics.

So, you know, sometimes it's good to be able to label something that way and give them a different picture. Totally. I mean, that just develops compassion.

The more we understand, I think the better we act when it comes to knowing how to care for other people. Yes. And that's one of the motivations for the book is to increase awareness in the general public of the reality that this does exist.

There's a large segment of your population right now in your city that have special needs. And what do you do? Can you do anything to help in that situation? Yes. And you know, an interesting thing is too, you know, most parents aren't expecting everyone to jump in and do everything, but to have just that understanding that you're noticed and seen and maybe even somebody saying, is there a way I could help? You know, I have Wednesday free.

I could come over and, you know, watch your son for two hours while you grocery shop or, you know, something simple. You don't have to jump in and be the 100% time caregiver. But I remember even one time in church, there was a leader of our church, not a pastor, but a leader.

And he said to me, you know, I very rarely ask people how they're doing because I'm afraid if they answer honestly, I might have to do something. I was shocked. Wow.

I thought, you know, first of all, if I thought that, I don't think I would say it, but that he said it was really a shock to me. But I think in many ways, that's how many people think, like, I don't want to talk to that family over there because they have a lot of needs. What if I get drawn in there and then I'm stuck? But I would like to think that most special needs families would welcome the occasional care and not expect what somebody thinks might be like, you know, come on and live with us and take care of my child because I need you so badly.

Yeah. And when that occurs, I think what will happen, because we all hear it in the questions that people ask us, many times people ask us passive questions like, you know, let me know if you need anything. Well, you know what? I'm not going to tell you what I need at three o'clock in the morning, right? But if you can ask more of a proactive question, like, you know, I'm going to the store today.

Can I pick up anything for you? That would be so refreshing to be able to hear something like that. So these proactive questions really, I think, help to reduce the need for us as caregivers to figure out just one more thing. And that question, along with many others, could also be asked of people in your church who have become handicapped even for a time when they break their leg, when they've had a traumatic, some kind of a surgery or occasion where their family is in turmoil right now.

Some trauma has happened. You know, that's something that we do all the time. I'll text somebody and I'll just say, hey, I'm going and running errands.

I'll be out a dozen times this week. I'm just throwing it out there. Let me know what you need.

I'll pick it up for you. Let me give you a perfect example of this one, Donna. And that is, we had one night, Cindy and I, we had made all these arrangements and we were going to go out to dinner with a group of friends.

And basically it would have been four more couples that we were going to go out with this night. Well, wouldn't you know it, we developed a leak and we had a hole now in our kitchen ceiling. Where was it? Cindy knows the details of it.

That one happened to be in Joey's room, which was kind of a glitch too, but yeah, it was just water. It was water. We told our friends that here's the situation and each of them said something to the effect of, well, sorry that happened to you.

Take care. And meanwhile, well, at the same time, Cindy has been mentoring this couple who has two severely, severely handicapped children. 100% care.

100% care. And they just happened to be planning to come over our house. And we told them the situation and you know what they said? What? We'll be right over.

Oh. We'll be right over. Now why would they say that? Well, because the special needs parent, they learn how to flex.

They learn how to adjust and they know how to engage. And so of all the people that we were going to meet with that night, it was the handicapped parents that were willing to come over and help us. And they were going to come over later in the evening, separate from this dinner.

And they just recognized the need. And so, you know, you begin to see people who are willing to be unselfish reach out from what their lack is even, you know, they didn't have any more free time at that moment than we did. And yet they were willing to be flexible.

They were resilient and they were going to come over. As it turned out, we didn't have anybody come over and we needed to get someone out to help fix what the problem was. But it just is a telling story, isn't it? How we just sometimes move on because we want to move on, maybe a little selfishly.

Yeah. That's just a sad reality that special needs parents live every day. Yeah.

Because, you know, we have our plans and we don't want our plans spoiled. And you know, it's just revealing. I guess you have so many opportunities in your situation for other people to reveal where they're at as far as thinking of other people and caring about other people.

And so, Joey is being used of the Lord as revealing to us, you know, what is our priorities? Is it the least of them? Is it people who are in need? And instead, we want to go about our own way. You know, we've got everything all set up and our plans are there, but to be interrupted in our plans. You know, it's interesting.

I know the Lord is going to grow us in all of this because there's going to come a time when we are going to be in need and we are going to be sitting perhaps in a wheelchair and we're going to get a first row seat into needing other people to come alongside and help us in some really embarrassing and needful ways. So I just do think that God is giving us opportunity to have compassion on others and to really enter into that need, which is so real. Now, if you could give, how about one or two pieces of advice to a parent about caregiving a child with special needs, help them along their parenting journey? Well, this might be a little off the path, but it's going to include our daughters.

I think sometimes when you have a child with special needs, you just realize just how all-encompassing it is. Yet recently, both of our daughters, who have turned out to be just such lovely young ladies, one has embraced the foster care system and actually has one foster care child at home now and is doing respite care for another. The other daughter, she's in acting and theater and things, and she has worked with Down syndrome adults doing improv.

And one of the things that they said, they said, you know, the reason our family worked together and the reason we have this compassion and desire to help others is because we never got our way, none of us in our family, we never got our way every time. And we would have to bend and flex, and as my mother-in-law used to say, you cannot be an oak, you must be a willow. And that was the key, you know, we all had to be resilient, we all had to be flexible.

Because if Joey had a bad moment, we couldn't just walk out the door. And if he was, you know, at the age of 15, it's not like you can put a two-year-old in a car seat who's having a temper tantrum and get to where you're going. And so, I just think, you know, my one piece of advice is, allow your children, other children, to be active in things that you can help them in.

Joe used to date the girls, take them on donut runs, and I would take them out and shop. Do all that you can for all of your children, but also not expecting them to raise that child that has special needs. They have their own life, and you realize that your child is your responsibility.

But then also to be able to just embrace the place and allow your children to be a part of that, too. And I'm just so grateful. In fact, the girls even said, and we've said, it's not so much how we've raised them, but how Joey raised us.

Wow. That's good. I think it's one thing to communicate a truth, it's another thing to live it out.

And I think that the main thing that we lived out is just the importance of being a team. T-E-A-M. You know, that when together, each accomplishes more.

We've been able to live out the importance of being a team to our girls, and they recognize that they play a very key role in raising Joey. And the term flexibility comes to mind many, many times in our lives, and that's just they just expect that. They just know that that is just our lifestyle, and we can't do anything about that.

And so, that's the one thing for sure, if I was going to give you just one thing to say regarding last words of wisdom, so to speak, it's just the importance of increasing that knowledge and that awareness of the importance of being a team with those in your family. And if I could add one more thing to blend what he said and what I said, if you fast forward 45 years now down the road, which we never thought we would see this day, that we'd be taking care of somebody for 45 years, all their care. But what's really amazing is that we each help the girls, the girls help us, and we're also flexible, and things change so much that it's almost comical sometimes, like how much whiteout we use on our calendars, because we still use a hard copy to keep all that intact.

But it's been really fun, too, now that there are young ladies with their own families, to be able to see how they're so willing to help us. And then we help them with their little ones. And it's not like we do it just because they help us, or they do it just because we help them.

It's just been our whole life, our whole lifestyle. Yeah, absolutely. I just think it's that giving freely, not under compulsion, as the Lord enables.

And cheerfully, it's a giving heart that's been developed because of your unique situation. Right. Yeah.

And we see it in the way that they raise their children, as Cindy was alluding to. We're certainly not going to be experts on this whole topic here, but when we see our girls raising their children the way they do, we know that what is causing them to act and say and do the things that they do is because it's birthed out of this understanding that we need to be willing to serve and be flexible with our families and our children. And so it's just really heartwarming to watch our girls interact with their children and know that the origin of all that was how they grew up with their brother.

Right. Boy, Joey had a ministry. He has a ministry.

He did. He really does. And you know, it's all as unto the Lord.

That is our desire, that as people see Joey, as people see us interact with him, and him with us. And not every moment is perfect. When you have a child with special needs who doesn't always understand everything, it can get trying.

But for people to watch, and hopefully that most of the time they've seen that we've really done everything as unto the Lord to glorify him. Now give us some takeaways. Give us some resources.

You mentioned a resource that comes alongside churches and helps them understand how to care better. Well, Key Ministry is probably the largest ministry currently with churches. We just had a recent conference with them, and they had some 800 people.

And these people are all people that are either doing ministry or want to do ministry within the church. So that's excellent. And certainly, Joni and Friends is a wonderful opportunity to learn different things, too.

They were there. And they were there, too. Also, they were represented there, too.

And, you know, throughout the book, we give different ideas, just like for finances, like who to talk to for special needs trusts and different things that are more pertinent, if you will, to a special needs family. And again, those are the kinds of things you're going to have to read through and decide what is best for me. We don't tell you where to go for some of these things that we share, but we're giving you ideas to start looking.

And then, just like you would a doctor, you know, you say, here's a doctor that worked for me, but here's three other ones. You need to go interview them and find out how will they be suitable for your situation. And so, you know, different helps that we have throughout each chapter.

Each chapter ends with ways to point someone in a new direction, maybe a different direction, or maybe it will encourage them that they're doing the right thing right now. That's beautiful. I can see this book working really well.

Perhaps there's a grandparent who now has a grandchild who has given birth to a special needs child. Maybe get the book, read it yourself, and kind of internalize everything. You know, I know handing off a book to someone who has a special needs child right away, they don't have time to read the book.

And they, you know, they're just, they're surviving. They're getting through the next moment, but, you know, maybe to help them, you can have that information at the ready and then be able to share it with them as the need arises. I know for me, the takeaway is continue to engage.

Don't shy away from the Down syndrome child, from the family. And then one of the things, too, is that we wrote this book in small sections for the very reason that you so wonderfully just stated, and that is, we don't have time to do a lot of reading. And so you can take this book, you can just read a short portion of it, put it down, and come back.

It's not like you have to read the whole chapter in order to gain the understanding that you need. That's beautiful. That's right.

Yeah. Oh, that's so needed. Absolutely.

Absolutely. Because, you know, just put it on the back of the toilet, you know, and it's right in the library. It's your new library.

It is the new library. And that's sometimes the only time you're going to have, you know, with the door shut, but there will be little fingers underneath the door trying to get at you. Well, this has been a delight.

Thank you so much, Joe and Cindy Ferrini, for sharing your journey with us. And I just know this is going to hit the mark of a heart out there today on Mark & Friends. Thank you so much for the time today.

Thank you, Joe and Cindy.