Parenting a Special Needs Child

Sojourn Network Event Media

Transcript:

I'm grateful that you guys would come. I looked at the other breakout sessions, I'm like, "Man, I would've gone with Mike Cosper." No, but I'm just kidding. My wife's a big Mike Cosper fan, so we tease her. But, my name's Orlando, and I'm with Summit Church down in Southwest Florida. My wife, Pam, and I have been married for 20 years.

We have two children, Max and Emily. Max is 12, Emily is 10. We ... They're both adopted from birth, and so I appreciate, Scott, that you would look into this, because we had tried ... we knew we had always wanted to adopt, but our plan and desire was always, "We're gonna have some children naturally and then we're gonna adopt." Until after many years of trying to conceive a child naturally, we just went to the pastor we were serving and he just said, "why don't ... what's stops you from pursuing both options at the same time?"

And so we did, and lo and behold, we adopted Max. And what's interesting is if you have a child with special needs, at least for me, there's dates that you won't forget, right? You know your child's birthday, you know your wife's birthday, you know your anniversary, you know all of these dates. But if you're a child of ... if you're a parent of a special needs child, then you also remember "that" date. And we talk about "that" date. For us it was March 20, 2008.

Max was born on July 7, 2006, and for the first couple of months, things were glorious. God had answered our prayer, we were just delighting in this joy of being parents for the first time, thinking about all of these dreams and aspirations, right? "My sons gonna roam center field for the New York Yankee, and it's gonna be amazing."

And then, as he ... as time went on, we started to notice our child is different. There's some things there and we kept pursuing the pediatrician and pressing. "Oh, boys develop later. Boys develop later, just wait, just wait."

And then finally we knew. You could drop my son in the middle of a room, he wouldn't move. You'd put something in his hand, he'd slam it, bang it, or line it up. He had a lot of sensory things. He didn't like things in his hands that were slimy or wet. He didn't like to walk on the grass or sand. He was started easily.

And then we went to All Children's Hospital in Tampa, and on Thursday, March 20, 2008, we received what we thought at the time was like a death sentence. "Your child has Autism Spectrum Disorder." And that just ran amuck in our minds and our hearts, and the worst thing you can do is start googling all kinds of things. And all of a sudden, for a time, that becomes your reality.

You lose sight of this thing that you had aspirations for and things that you were pursuing, and things that you know God had spoken to your heart, and things that God had ... was doing. And all of a sudden, just fear overwhelms you. And now you're in this whole, new almost narrative that you're living in to. And that's what it was like for us for several months.

And I'm not here in any way and just ... just as we share each others stories, right? We can ... quick and not even like ... not even share each others stories, but just introduce ourselves. We can tell and see that there ... that when we talk about special needs, there's a variety of things. It's a plethora of different things that we're talking about.

So I'm not here in any way, shape, or form to give you a "how-to" and this "one-size-fits-all" ... that's not my heart. In fact, I was "volun-told" to do this. I had great trepidation. I always volunteer Jamen to do anything. When somebody invites me to speak, I always sign him up. And so ... but Dave Harvey was like, "you're gonna do this," and there you go.

But what I thought was ... instead of focusing so much on the "how," just challenge us and encourage us as Gods been encouraging my wife and I in the "what." What is it that God has called us to ... in regards to parenting. His gift, right? And then the "who." Who is it that ultimately this child belongs to? And who is it that has entrusted this child to us?

And so, just for the next moment, I just wanted to share with us ... nothing profound. There's nothing profound, there's nothing here that you're gonna be like, "that's earth shattering." But if anything, I just hope that it would encourage each of us. And by the end of this time together we would maybe reassess or be reacquainted with what it is that God has called us to, who he is, and this precious, precious gift that God had entrusted into our lives, right? For a season, and how do we live faithfully into that season.

A passage of scripture, for me, that has been important in this journey is Psalms 73. And you guys probably know this passage really well, it's written by a man named Asaph, and Asaph was one of the temple worship leaders. And he comes from a lineage of temple worship leaders. His brother was a worship leader, his dad was a worship leader, his dad's dad was a worship leader. And so you have this ... and the bible does actually talk about Asaph in other places. That he was a man of God, that he knew the word, that he was skills.

And yet, we're not exactly sure what the backdrop is to what is going on in his life in Psalms 73. But whatever it is, it's heavy. And the reason that's important to me is because ... to remind ourselves that, even as pastors, as laborers in the mission of God, we're not exempt from hardship, are we? We say at our church ... I say all the time, "You're either in a trial, you either just came out of one, or you're heading towards one."

That's the reality for every believer. The goodness of God, and his person, and his character never change. And yet Asaph is so honest and so on point in Psalms 73, that he starts Psalms 73 with a very profound theological statement. He says, "truly God is good to Israel. To those who are pure in heart."

That's not a ... that is such a profound statement. He's saying in that way that God is perfect, right? That he's holy. That he's just. That one little statement ... in some ways Asaph is trying to encompass all that God is. And it's right. The people ... the first hearers of this would have said, "Amen! Absolutely! You nailed it!"

And I start thinking about that often because ... my first challenge to us is this: that as we journey, we must bring our heart along with us in this journey of faith. All of us in here love the word of God. We are seeking to be faithful biblicists, the eloigns, right?

And yet, at times, when it comes to this journey that God has us on ... if we're not careful, we'll try to use our theology to try and mask our feelings. Or try to use our theology to keep us from just engaging with the whole person with a whole God. What do I mean by that? I remember when Max was first diagnosed. It was the Thursday before Good Friday, and that Sunday, these guys had entrusted me to give the Easter sermon. And that year was the first year we did it in an open air park. We brought the two campuses together, we did this blitz.

And I'm driving home from Tampa, and I'm thinking, "okay, I was really confident on the way up here, and actually excited to talk about the resurrection of Jesus Christ. The hope of the Gospel." And now I'm driving home and I'm not as excited, not as ... not that I'm not convinced theologically, but I'm so ... like distant from that. Does any of this make sense?

And people then asking me, "how are you doing? How are you doing?" And you give that answer, "Surely God is good to Israel." But I'm not bringing my heart to that. And I was afraid for a while to bring my heart to it. I tried to theologically navigate this journey all the way through, without ever trying to engage my heart in this. When I talk about my heart I'm talking about those feeling that encompass that, right?

The feelings of sadness and loneliness and fear and anger and shame and guilt. And what's interesting is when Asaph says, "truly God is good to Israel," notice the second verse: "but as for me, my feet had almost stumbled. My steps had nearly slipped." And then he goes on to talk about why that happened. "That though I understand something so theologically profound, I'm looking at my circumstances and my circumstances are telling me something different than what I know to be true with my head."

And I know ... that as men, its hard to engage with our feelings. We normally say something like, "Well I'm not an emotional person," right? But the reality is we're all emotional, we just never been taught to feel our feelings, right? I mean, even now, when my kids get hurt ... they'll ride their bikes and they fall, what's the first thing we do? It's like, "you're not hurt, get up!" Like we don't know what to do, when in reality that looked like it hurt. You just flipped over the handlebars. That ... you should cry. You know?

And yet every part of the trinity feels. Imago dei, "we are created in the image of God." And so if every part of the trinity feels, then we were wired to feel. And its not until we feel that we actually begin to engage with the truth. Now, I'm not saying, listen to me very [inaudible 00:11:00], I'm not saying that "feelings are gospel." Feelings are just a dashboard, and a lot of times they're a window to what I ... actually engaging and believing to be true about the gospel in this moment.

And if we're gonna shepard our kids, if we're gonna engage in this, then we have to bring our hearts to this journey. We have to bring our whole person to this whole God that we love. I remember ... I'm a big sports fan, and this was one of these things that I had to mourn as my son was getting older. I've taken him to the park and watching other dads and going, "You know, I won't have that." My son is ... my son doesn't have that.

Well then we started to just shoot baskets, and ... if you know anything about Autism Spectrum Disorder, the part ... they all have like a little bit of a savant ... they ... because they're repetitive, they can pick up things and they can master it. Well my son, mastered like set-up shooting. So you can put him at a spot and it was swish. I almost wanted to take him into like parks and be like, "I bet you $5 my son will hit that shot." We'd make a lot of money.

And so my wife's like, "why don't you enroll him is basketball?" So I talked to him and I was like, "Max, wanna play basketball?" And he doesn't like to be outside, doesn't like to sweat. I'm like, "its indoors and there's AC." He's like, "I'll do it."

And so at practices its different. You just do drills and you just shoot. And he gets to shoot from the spot he wants to. And the first game, we're so excited, got my family there, my in-laws, and my friends, some of my friends are there. And Max comes out, and at the ... the half way point of the first period, my son comes in, and he's running up and down like normal kids. And there's this pride that swells up in me and I'm like, "That's my kid!" And he gets the first pass and he shoots it and I'm like, "that's my kid!"

And then right after he shoots it, there's a foul called. And the whistle blows, and right away my son puts his fingers in his ear, and he runs over to the referee and he's yelling at the referee, "Don't do that again! Don't do that again!" And all of a sudden, I just start to sink. And then he blows the whistle again and now my son is the kid running up and down the basketball court, not worried about the ball anymore. Just following the referee, literally, and saying, "don't you dare blow the whistle again! Don't you dare blow the whistle again! What's your problem?"

And then at the end of the period ... you know what happens at the end of the period? And then he runs over to the scorer's table, starts slamming on that. Now my theology is great, but my theology doesn't help me in that moment, does it? Because in that moment, what am I feeling? I go from elation to this feeling of shame and guilt. I'm not as proud as my son. And God has to deal with me. The only way God can deal with me in that is if I actually bring that to the Lord, right?

Listen, I don't know where you are in your journey but I guarantee you, I will bet the farm, that you live in this journey long enough, you're gonna have a whole host of different emotions. And I would tell you, "don't suppress those. Just bring them to God." Bring all of that to God.

You know, there's something interesting that we see in Genesis, right? Any working theology that we're gonna have of God has to start with Genesis, right? The God who always was, is, right? Speaks the world into existence, he makes everything perfect, he sets man there, and we understand what happens, the first greatest tragedy in human history is human aloneness. He makes women, and they live together, naked and unashamed, and they live in perfect community with God. Sin enters the world and we see the first ... we see the next chain reactions, not only that that relationship is broken but there's a toxicity of shame and guilt between Adam and Eve, right?

Shame that says, "now I got to hide myself because," Jared, "if you saw these parts of me, you wouldn't want me anymore." And then the shame of guilt that says they "heard the God of the Universe coming" and they hid. Genesis 3:9, in my opinion, the most profound question in all of the Bible. God comes to them. The antitheses of the lie they want to believe. He comes for them and says, "where are you?" Isn't that profound? Not a geographic question, right? He knows their location, he doesn't need GPS. What he's saying is "where's your heart? Where are you in this?"

And constantly in this journey we're gonna have to ask ourselves that question and bring that answer to God. "God, today, this is where I'm at. I'm just so fearful. Now my sons in sixth grade, he's in middle school. Kids are mean. Kids fire off 'oh God.' I know you're good, but I got to be honest with you - I am crippled with fear." Its hard, isn't it?

Because ... especially if ... you're the one in charge of standing before you're people and proclaiming this every single week they may be this tension in your heart and my heart to believe, "well, were not allowed to have such feelings." And what a lie. What a lie. To shut those feelings down is almost like to try to be unhuman. God is not looking of your performance or my performance as a parent, but he's looking for our dependence upon him as his child.

Psalm 139, "Oh search my theology, oh God?" Would you critique my preaching? Oh no no no. "Search my heart, oh God." I'd search my heart. And guess what, because he already knows my heart, he's not afraid of what I'm going to bring to him. But its in what I bring it to him that he gives to me what I desperately need. His grace and his constant reminder that he walks with me.

Heres the second thing: is that we don't forget that your child is first and foremost a child, and a gift to be enjoyed. So my son gets this diagnosis and we go right to work. We go right to work. I'm researching doctors and therapies and he's going to music therapy and he's got occupational therapy and we go se holistic doctors, and this doctor, and this Autism Spectrum Disorder b ... we go after it just like you would. And there's nothing sinful or wrong about that, that's wise. If you had a gunshot wound right now, I would not be like, "hey man, good luck with that." I'm gonna try to help you.

We ... our child needs for us to advocate for them. But if the advocation takes over in such a way that our child is now something or someone that we're trying to heal, or a puzzle that we're trying to solve, rather than recognizing, first and foremost, he or she is a gift to be enjoyed, we've missed it. Do you understand you and I recognize this, right? God can heal my son right now. I could go home and my son be like, "what up?!" So yes we pursue the therapies and all of these other things but not over the reality, Jared, that first and foremost your daughter is a child and a gift to be enjoyed.

Listen to these passages, you know them. Psalm 127:3, "Behold that children are a heritage from the Lord. The fruit of the womb, a reward." James 117, "every good gift and every perfect gift is from above coming down from the father of lights with whom there is no variation or shadow due to change." Psalm 139, "for you created my inmost being. You knit me together in my father's womb. I praise you because I am fearfully and wonderfully made, and your works are wonderful."

You see the phrase "special needs" has come to classify children who are different than the average child. In ways such as medical distinction, right? So there are things like heart defects and cancer and muscular dystrophy and chronic conditions like asthma or diabetes or cerebral palsy. There's developmental disorders like Autism Spectrum Disorder, Down Syndrome, intellectual disabilities, learning difficulties. Things like dyslexia, Central Auditory Processing Disorders.

Or "special needs" can be referred to as behavioral or mental health issues. Things that encompass things like Oppositional Defiant Disorder or ODD. Disruptive Mood Disorder, Attention Deficit Hyperactivity Disorder, anxiety, depression, OCD. There's so many things. And if were not careful, really what our society will tell us with this label "special needs" is that our child is defined by what he or she can't do. By milestones that your child has yet to meet or may never meet. By foods that they can't eat. Activities they can't participate in. Or experiences they will never have.

Theses are the type of things that can set parents on a trajectory that says to them, "the goal is to get my child to be 'normal,' whatever that means." Now again, that's not a bad thing. If were consumed by trying to figure this puzzle out, then we forget, at the end of the day, your child is still a gift from God, and a gift that he meant for us to enjoy.

So for almost three years of my son's life, we never heard him say a sound. Sound. Now they knew he had the ability, but they weren't sure he would. The only sounds he would make would be screaming sounds when he was frustrated because he couldn't tell us what he wanted. And those yellings would go on for a long time. A long time. And when yelling wasn't getting it, then it was hitting and kicking and biting and scratching. And there were many, many days that you ... that I would just have to bear-hug him from the back and then be careful that he wouldn't hit me from swinging his head.

And so my wife and I set this tra ... we went on this ... just prayer ... we were like, "God, we just want to hear his voice. Not the 'ahhhhh.' We just want to hear his voice." So one day my wife calls me from work and she says, "you gotta come home from work right now." And this was normal. "I just need you right now, I just need you." I said, "is everything okay?" "We're safe, but you gotta come home."

And I come home and Max is normally like ... he normally was right there in the living room, on the carpet, just sitting there staring at a toy. Us waiting for him to engage with it, whenever he would, and try to teach him how to play with that toy. So my wife gets down and she goes, "Come here." And I get down on the floor and she's looking right in his face. She's like, "Max, Max, Max. Take the bus." It was an alphabet bus. "Max, hold the bus. Hold the bus." And he holds the bus and then Pam takes his finger and goes, "Show Daddy, show Daddy, show," and he goes, "A. B. C." And we just ... I started bawling. I'm like, "get a camera! Because we don't know if he'll ever do this again!" And she's like, "He's been doing it all day."

There's a thing called regressive autism. And my son had shown that. That means that your son can wake up one day or your daughter can wake up one day and master something and then the next day not now how to do it. Just lose it. So I remember every morning sense that day, I would ... I would literally ... because I was in charge of getting him up in the morning .. we would do these morning therapies, and I would run in and wake him up and go, "Max, Max, Max, Max! Heres the bus! Come on!" Because I was so afraid that he would never say that again.

And I remember one morning going right to the door and God said, "What would it be different if you just went in and just celebrated the fact that he's breathing, he's alive, that he's yours, and they you get to enjoy him." Radically changed. That fear of like, "oh gosh, he's gonna lose it," just became, "God, I can just enjoy him today."

Psalm 90 became real for me. "Oh God teach me to number my days that I may know to grow wise in my heart." Jesus doesn't see our children the way that the world may mark him, does he? Even in biblical times, children of all types were sometimes seen as insignificant but that's not they way Jesus ever saw children.

Mark 10 tells us, right? "And they were bringing children to him in that he might touch them, and the disciples rebuked them. But when Jesus saw it he was indignant and said "let the children come to me. Do not hinder them for to such belongs the kingdom of God."

You see, your child is not a minus. He or she is a great plus. With great capacity and great value or worth to the father. And when we get more caught up in enjoying our children rather than solving the mysteries of their disabilities, we then live in to what our number one call was, right? To love them and disciple them and show them the love of God.

One day my wife challenged me and she said, "you know what, read Romans 8:39." I was in a really dark place with my son. I said, "I know what Romans 8:39 says. That's not gonna help me right now." I said it just like that. No, you need to read it. So let me read it to you. "No height nor depth nor anything in all creation will be able to separate us from the love of God and Christ Jesus, our Lord." That means Jack has an ability to know God's love. And I believe all children with special needs ... there's a special way that God has to show them his love.

And we get to be those mirrors, and if we're not careful we can spend more time trying to solve this puzzle rather than living in to the first call of discipling our children in Jesus and showing them the great love of the God that we serve.

Chuck Swindoll said, "each day of our lives we make deposits in the memory banks of our children." I want my deposit to Max's life to be ones that he knows, man. God is real, and God's love abounds, regardless of what his disorder is.

Number three is simply this, and I don't say simply, but: remember that God isn't doing doing something to you, but rather he is doing something in you and through you. So I'll never forget the day my son was born because we got the call that his birth mom was in delivery. She lived about four hours north from us. We got in the car, drove there. It was a traumatic birth. The Yankees were playing the Cleveland Indians, I remember that as clear as day. They won 12 to 6. It was a great day. And I remember my wife and I were sitting in the lobby, the waiting room area. We were praying, and Act 17 came. I opened the Bible and it said, "Paul and Silas were men who turned the world upside down to the gospel of Christ." And I claimed that, I felt like that's what God said, "I'm gonna do."

And then, it doesn't add up. And I go, "Huh!" And all this bad theology begins to permeate my life because I'm like, "maybe God is punishing me. Maybe it's something that I didn't live up to. Maybe its just" ... and what? No way. God's not punishing us. God's loving us well because he's given us this child so that he would do something in us and he would do something through us.

Over the last twelve years, you know what God has showed me? That that verse is more true than I ever thought because the world that has radically been flipped upside down is my world. I have learned how to worship God more because of my son. I've learned what it means to pastor with compassion because of my son. I've learned what it means to enjoy the journey, all parts of it, because of my son. I've learned that running is great but sometimes just walking and sitting is glorious too because of my son. I've learned the depths of the gospel in a way that I wouldn't have learned because of my son.

God's not doing something to us. He loves us enough to do something significant in us and through us. And that distortion is not new to us, its something that we see throughout scripture. John 9, "As he, Jesus, passed by, as he saw a blind man from birth, and his disciples asked him, 'Rabbi, who sinned? This man or his parents, that he was born blind?' And Jesus answered, 'it was not this man who sinned, or his parents, but that the works of God might be displayed in him'."

I hope that today I challenge you with this: "reflect on how God has grown you. How is he continuing to challenge and mold you today? What would you not know right now through experience if it wasn't for your son or your daughter?"

Max has shown me the goodness of God in amazing ways. Think about this: "reflect on the circles you are now in because of your child." I would have never thought that part of where God has called us to live is within families who share a similar journey. We know people and we're connected to families now. Our church is in the process of developing a special need ministry. I don't ... whether or not we would have gotten there, I don't know. But I think my son has been a catalyst for something like that because God has ...

See, all of us wanna shape the world, don't we? You went into ministry ... you didn't go into ministry because you were gonna make money. You went into ministry because why? You said, "Man, I want to give my life to something greater than myself and I want to live in to a narrative that's bigger than my own." Well here you are. God's answered that prayer. So we need to thank him, don't we?

When James Montgomery Boice was diagnosed with cancer, he stood before his church and he said, "You know when we go through things like this, we might think it would be right to say, 'God, change it,' or 'let me change it'." He said, "but if he'd let us, we would ruin it. God's ways are perfect. God's ways are perfect."

Andrew Wilson, if there's one resource that I would recommend is his book, "The Unexpected Life." Andrew Wilson and his wife Rachel have two children with severe, regressive Autism Spectrum Disorder. But in that book he says, "God's purpose has come through millions of unnamed, unheard of things in unnoticeable ways to the glory of God."

Heres the fourth thing, we gotta go quickly: don't lose sight of your spouse and your marriage. The most haunting and frightening statistic that we learned early on is that married couples with special needs children have an 87% divorce rate. The fact that we're here means that our wives, our husbands somewhere, right? Dealing with our children by themselves and if its tough for us, its gonna be tough on them. So for us the things that we have often talked about is that time together, for us, is nonnegotiable. We love Max, we love Emily, but we need that time. The best gift that we can give to Max and Emily is an intimate relationship that we share that's an overflow of the intimacy that we share with Jesus Christ.

One other thing is: deal honestly with your frustrations, you fears, your feelings, your schedules, and your pressures. I don't let my wife say to me, "I'm fine." No, no no. I know what its like. "Where are you? It's okay, this is a safe space. We share this together." Make space and margin for your spouse. Again, we have this outlet and so one of the things I want to do is I want to be faithful in allowing God's gift that he's granted to my wife to be crafted and to be used now. As much as she loves Max and she loves Emily, and she gives herself to that, I know that God has given her a gift, and so I want to make sure. I want to give space, I want to fight for that margin and say, "Man, you have a passion to disciple young ladies, go do that. You love leading worship, go do that." I wanna ... as much as you're fighting for me to have space, I wanna do that for you as well.

And heres that last part is: seek help early. If you're struggling, go get help. Don't suffer in silence. There's a couple that is like spiritual parents to my wife and I, that have walked with us for the last three and a half years, and I don't know where we'd be without individuals like that.

Heres the last thing, I want to leave time at the end. Don't walk this path alone. This whole conference is about collaboration and I think, if were not careful ... because we're ministers of the gospel and people want to be missional-driven, we think of collaboration solely on projects and efforts and productivity. When collaboration is first and first soul stuff, its heart stuff. And you and I can't do it alone. We've not been called to do it alone. The fact that we're in this room together means what? We're not alone in this, right?

And there is something special and synergistic that Ryan, who lives all the way ... we couldn't be on two further points in the continental US. But brother, you and I and our wives were swimming in a pool two years ago. Talking about our children. And you've been such a blessing to me. You always pray for me, you text me, you call me, and you remember stuff. You pray for my family. How sweet is God? And then you talk in an accent and it sounds Godly.

How is the common grace so special a grace that he puts people in our paths? And we need to press into that. We need to take full advantage of that. We don't ... listen, that a special group. God put Jamen as my neighbor and he had taught his kids how to love my son.

I noticed that not everybody invited my son to birthday parties. I'm over that. But man, we have two, three families that have taught their kids how to love my son. That's God's special, special gift. Don't, don't try to walk and navigate this by yourself.

You guys know this quote, C.S. Lewis, "friendship is born at that moment when one person says to another, 'what? You too? I thought I was the only one'." You're not, I'm not, and there's many more in out midst that would love the opportunity and would love the community that God provides for each of us, right? This is a beautiful thing. I tell you this is not a "how-to" just a challenge.

I was supposed to leave time for questions, but you know what, I'm not gonna do that. Here's what I'd rather do: of we just pair up, okay? For the next few minutes, and just, would you do this? Would you pray for each other? Pray for specifically for one another's child. And heres what I want you to do: as a parent or a future parent of that child, I just want you to hear your child's name prayed over you. I want you to receive that today, God's common and special grace and love.

So let's do that, okay? We're gonna do that for ... we got ten minutes. We'll do that for four minutes. And then I interviewed my son because he thought it was ... because I went to my son before this and I said, "Max, do you think I should do this? Because if you don't think I should do this, I won't." He said, "I want you to do this," and then he wanted to be a part of it. And so, it's just like four minutes,

Alright, so pair up, I'll give you four minutes and then I'm gonna play this video, and then I'll pray over us, and we'll be done. Can we do that?