By Shannon Baker, BCM/D National Correspondent
MILTON, Del.—Tom and Shelley Stolle understand all too well what it is like to care for a child with special needs. The youngest of their three boys, Jimmy, now 9, has autism.
According to Autism Speaks (www.autismspeaks.org), the nation’s largest autism science and advocacy organization, autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD).
The organization estimates that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.
That translates to an estimated 1.5 million individuals in the U.S. and tens of millions worldwide that are affected by the condition. Current estimates are that in the United States alone, one out of 70 boys are diagnosed with autism.
“I remember when Jimmy was born. It was an awesome experience, just like the birth of our other two boys. But we noticed shortly after he was born that Jimmy was a bit different,” shared Tom, the chief financial officer of the Baptist Convention of Maryland/Delaware.
“Instead of rolling Matchbox cars, he would line them up next to each other. Or he might line up empty soda bottles and look at them. He would flap his hands and move his hands around and spin his feet around, but we didn’t know what all that meant.”
Tom shared that he and his wife, Shelley, didn’t know anything about autism so they just thought that Jimmy was different and that he was cute. But other people, including Shelley’s sister, Kim, noticed things they didn’t notice.
Kim had previously interacted with a child with autism and when visiting the Stolles noticed that Jimmy displayed similar behavior.
“It was hard to hear but I got online, and I read one paragraph about autism, and I knew. It finally all made sense,” Shelley said.
The only thing she had ever known about autism was based on the movie, “Rain Man,” in which Dustin Hoffman portrays an extreme case of a savant, a rare condition in which people with developmental disorders display an area of expertise that is in contrast with the individual’s overall limitations.
Tom remembers that he was initially very angry because when Kim said she thought it was autism, what he heard was something like, “You just called my son stupid.”
He added, “For awhile, I felt guilty for not seeing it, just thinking he was a late developer or he had some peculiar habits.”
The Stolles took Jimmy to Kennedy Krieger Institute in Baltimore, Md., to be tested.
That was a tough day, Tom said. It was very obvious that Jimmy was different.
“When I first found out, I was hurt, very frightened,” he said, admitting that he went through a period that he was very angry with God.
Shelley remembered going out and buying a bunch of books to learn about the condition.
“I was just overwhelmed. I don’t even know how much money we spent on books. Every time somebody would recommend a book, I bought the book and tried to read it and learn,” she said. “Then, we were also trying to get him assessed officially and get him into school so that he could get some therapy.”
Once they got Jimmy enrolled into a special school, the teachers helped them realize that they didn’t have to know everything all at once.
“You have to take these baby steps and try one step at a time,” Shelley said.
At the time, the Stolles were living in Bowie, Md., where they were delighted to find a really good program through the Prince George’s County public school system for children with special needs.
Later, the Stolles moved to Delaware where Jimmy could attend the Sussex Consortium in Lewes. In the same city, they found Seaside Church, which has proven to be a very positive experience for the family.
“The people at Seaside minister to Jimmy. They love Jimmy. Jimmy is very comfortable there. We are glad to be a part of that family. Pastor Charlie Arnold and the other folks there really do love Jimmy,“ Tom shared.
Tom believes that the church will continue expanding its ministry to families with special needs, which for Tom is part of his “big dream.”
Tom referenced John 3:16, which says, “For God so loved the world that He gave his one and only Son that whosoever believes in Him shall not perish but have everlasting life.”
“Jesus says ‘whosoever will,’” he stressed. “It’s not only for the smartest or the brightest or for those in society that fit in or are considered normal. It’s everybody.”
He continued, “The people on the fringes of the population are just as important to Him as those who are in the mainstream. Jesus doesn’t say, ‘You’re not good enough to make the cut.’ Jesus says, ‘I love you, and you’re all included.’”
The second half of Luke 14:21 also jumped off the page into Tom’s heart: “Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.”
He dreams for there to be churches where special needs isn’t just a ministry of the church. It is the church where special needs families and their kids can come together in a single worship service and worship God and feel like they are included.
In other words, they have a seat at the banquet table like Jesus talks about in Luke 14.
“Jesus doesn’t say, ‘Go get the poor, crippled, blind and the lame, and we’ll put them in a special section of the banquet.’ ‘Bring them in,’ He says, ‘so my Father’s house will be full,’” Tom stressed.
“At the end of the day, we are all special needs. God sent Jesus to die for us because we had a special need. We were all separated from God, and God sent Jesus to bridge that gap.”
Tom said that the last time he checked, 100 percent of the people who are born are born with a sin problem, and every single person has to make a conscious decision to accept Jesus as their Savior and Lord and be reconciled with God.
That includes those with special needs.
A wise friend encouraged the Stolles to read Scripture to Jimmy when he was three years old, an idea that Tom admits he “pooh-poohed” at first.
“But I’ve come to realize through sharing the Word of God with Jimmy and bringing him to church and the other things that we do, Jimmy gets it. Jimmy receives it in his own way, and he understands a lot more than people realize.”
Believing that a lot of special needs kids understand more than what people think, Tom used the analogy of financial investment to explain.
“Our job is to invest in Jimmy, much like you have a retirement plan. You throw money into your retirement plan. You don’t know 10, 30, 40, 50 years what that’s going to be. But you don’t not do it because you think it will never result in anything,” he challenged, noting that a lot of times, at the end with compounded interest, there’s a lot more than expected from the investment.
“When you invest in a life, that is multiplied, and you don’t know what that person will become, and you don’t know the impact that person will have on others,” he said, sharing his own experience with his son.
“Jimmy just blesses people. He’s just an amazing kid. There are many, many Jimmys across the country and around the world that bless people just because of who they are. I believe my church is blessed because of Jimmy, and I think more churches will be blessed if they embraced more of these children and their families.”
Tom admits that a special needs ministry will not be easy. He is quick to point out that children with special needs do not “cause problems” but the dynamic “magnifies challenges.”
He pointed to statistics that show as high as 90 percent of marriages that involve special needs children end up in divorce.
“My wife and I are very aware of those statistics so we have to be very intentional in our marriage,” he said, explaining what typically happens in the family.
“The mom intensely loves that child, nurtures that child, pours her life into that child, and in spite of what many of us think, moms don’t have this vat of energy that never runs dry. The father feels, ‘Hey, there’s nothing left for me.’ The father gets to escape, go to work and have more going on in his life. He starts to withdraw. The marriage grows apart.”
He stressed, “What a ministry opportunity for our churches to step into and bless these people and show them the love of Jesus! Special needs ministry is more than caring for the child. It’s also the care for the family because many of these marriages—if they are still intact—are a disaster.”
Moreover, he says there is a large segment of the population who wants to go to church but many feel that they can’t, afraid of how their children may respond or behave or that the church won’t love or embrace their child.
But Tom and Shelley know that these children have so much to offer and that God will use them to teach special lessons to individuals and families.
“Jimmy is a person that God is using in my life to change my heart more profoundly than anyone I’ve ever met. Jimmy is so loving. He’s so pure. He’s so innocent. Having Jimmy in our lives allows us to see people differently,” he said.
Shelley agreed, “Jimmy is very loving and there is nothing fake about him. You always know that he loves you and he has just changed everything about me from noticing every little detail. We appreciate so much more about everything that he does, every little victory that we have with Jimmy is magnified because it is so easy to look at all the negatives. But with Jimmy, … every little victory he has makes us appreciate so much more. We just appreciate life more.”