COVID-19 Challenges for Families with Special Needs
By Sharon Mager
Recently, we asked Baptist Convention of Maryland/Delaware Associate Executive Director Tom Stolle how the COVID-19 pandemic is affecting families with special needs. Stolle and his wife, Shelley, have been married for over 25 years and have three sons, JT, Jake, and Jimmy, who has autism.
The family’s journey has often presented significant challenges. However, that journey also sparked Tom’s God-given passion to be a voice for families with special needs, one of the largest unreached people groups in the world. Tom has become a sought-after national speaker who shares his heart – the pain, joy, and the victories – while providing gentle encouragement to other families with special needs by pointing them to Jesus.
The COIVD-19 pandemic has had an incredible impact on society as a whole, but how has it affected the special needs community? What new challenges do families with special needs face in light of the virus?
Families with children in school are now experiencing much more distance learning, as their curriculum has shifted to an online format. However, for many children affected by developmental or intellectual disabilities, online learning is much more difficult. These students may struggle with navigating this change, and those with more significant challenges may require in-person, hands-on education. As parents see their children struggle, they too may struggle.
Routine and consistency are important in many of these households and many families have had to adapt to new routines. This can be overwhelming.
In addition to the change in learning formats, many individuals have lost jobs and this impacts those in the special needs community as well. On-the-job training programs, or jobs that employ many of these precious individuals with special needs, do not exist at this time. For example, Jimmy, my son, worked at three job sites weekly through his school program. He learned basic job skills and benefited from community engagement at those sites. That learning and positive reinforcement have disappeared.
Families that live with the daily challenges of disability in their homes face even more difficulties as visits to doctors and therapists may be virtual or canceled. Many individuals require consistent assistance that is not provided at this time.
We are all affected by the lack of community engagement. Families with special needs may feel this more severely as they experience no escape from the daily grind of care-giving in a lockdown setting.
I believe that God created us to be in community with one another. I think about the early Christians referenced in Acts 2:46-47, “They worshiped together at the Temple each day, met in homes for the Lord’s Supper, and shared their meals with great joy and generosity — all the while praising God and enjoying the goodwill of all the people. And each day the Lord added to their fellowship those who were being saved.” Consider the words referenced in these verses, such as “worship”, “great joy”, “generosity”, “praising”, and “enjoying.” These are all components of a healthy life. Positive community engagement is good for our mental health. Families with special needs tend to deal with more isolation, which can be exhausting and contribute to strain within the household and a feeling that, no matter what the church or society in general says, they really are alone and no one is coming to help them.
Routines are often vital for people with special needs. How are you handling that with your son, Jimmy? What advice can you give to others regarding the issue of routines?
Jimmy’s daily routine is vital to his happiness. He must know what is scheduled. Changes to that routine can be acutely stressful.
The COVID-19 pandemic blew away the standard routines for most of us. Jimmy has had to adapt and adaptation is much easier when there is love and support. As Jimmy settled into a new routine, we poured constant positive reinforcement on to him. He received many smiles, hugs, and kisses from Shelley and I, as well as many comments, which reminded him that he “is a good boy.”
I found another way that helps Jimmy deal with new routines. I had to find a way to send Jimmy to bed happy, to eliminate any stress that he was feeling. It may sound silly, but one specific thing that helped Jimmy adjust to this “new normal” was when I started doing a little dance right before Jimmy’s bedtime (and believe me, I can’t dance). Now as part of Jimmy’s routine, we dance every night before he goes to bed. As I said, it sounds silly, but it’s one part of his love language. So I dance… every night!
I believe the key is love. In 1 Corinthians 13:7, the Scripture states, “Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.” (NLT).
Our motto during this time of new routines for Jimmy changed to, “Be Disarming, Not Alarming.” Pour out love in spite of your circumstances. It works for us.
How can the church help you and other families in this situation?
The building is not the church; the people are. So, many individuals and families affected by disabilities feel alone. During a time like this, finding transportation may be more difficult. Visits from or outings with others may not happen do to social distancing and the fear that has gripped many concerning this virus.
The church can help by simply being the church. What does that mean? I love what Martin Luther said hundreds of years ago: “I shall ask God mercifully to protect us. Then I shall fumigate, help purify the air, administer medicine, and take it. I shall avoid places and persons where my presence is not needed in order not to become contaminated and thus perchance inflict and pollute others and so cause their death as a result of my negligence. If God should wish to take me, he will surely find me and I have done what he has expected of me and so I am not responsible for either my own death or the death of others. If my neighbor needs me, however, I shall not avoid place or person but will go freely as stated above. See this is such a God-fearing faith because it is neither brash no foolhardy and does not tempt God.”
The church can help by going to those in need. Sometimes visits can be virtual, utilizing technology to engage in prayer, conversation, encouragement, and so forth. However, as I consider the words of Jesus in Matthew 25:34-40, sometimes there is no substitute for physical interaction: “Then the King will say to those on his right, “Come, you who are blessed by my Father, inherit the Kingdom prepared for you from the creation of the world. For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger, and you invited me into your home. I was naked, and you gave me clothing. I was sick, and you cared for me. I was in prison, and you visited me.’ Then these righteous ones will reply, ‘Lord, when did we ever see you hungry and feed you? Or thirsty and give you something to drink? Or a stranger and show you hospitality? Or naked and give you clothing? When did we ever see you sick or in prison and visit you?’ And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’” (NLT).
In short, as the church, our faith must be bigger than our fear. Do not be afraid to write that text, send that email, and make that call that will encourage someone. But, if that person or family is in need, and a virtual solution is not available, do not be afraid to be the hands and feet of Jesus. It’s okay to take precautions to protect your own health while serving others. I am thankful for so many healthcare workers, grocery store workers, and many others at this time who are loving and serving through their occupations. Oh, how much more the church could do if it is motivated by the love of Jesus to serve others in need.
How should Christians view individuals with special needs? Since this seems to be a time for churches to do some self-evaluation, I would think that this would be an ideal time to include special needs ministry in that evaluation.
I think Jesus answered this question with amazing clarity in John 9:1-3: “As Jesus was walking along, he saw a man who had been blind from birth. ‘Rabbi,’ his disciples asked him, ‘why was this man born blind? Was it because of his own sins or his parents’ sins?’ ‘It was not because of his sins or his parents’ sins,’ Jesus answered. ‘This happened so the power of God could be seen in him.’” (NLT).
Perhaps the disciples were thinking something like this: This is awful. Someone must have sinned for God to “inflict” this horrible life sentence of blindness upon him. What can he possibly do? He can’t work. He must beg for help. He’s vulnerable. He’s poor. He constantly needs help. His existence is so pitiful that God must have cursed him. What is he even good for?
The disciples thought that the man was worthless. They focused on his limitations and his circumstance.
Jesus points out that what we see isn’t always the truth. It isn’t always the complete picture. Jesus, the master teacher, turns the tables. He shines the light of truth. He likely stuns the disciples when he says: “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him” (John 9:3, NLT).
Jesus is basically saying here: You guys don’t get it. There is no curse. Quite the opposite. He displays God’s power and glory. Jesus uses this man to advance the Kingdom of God.
Jesus is pointing out that this man was designed this way for a purpose. Jesus is reframing the picture.
The disciples’ default view was that this man was somehow less. Jesus points out that this man has an incredible purpose. Jesus points out not only is he not cursed, not only is he not somehow less human, but he is a vessel that God chooses to advance His Kingdom and glory.
In short, Christians should view individuals affected by special needs as priceless and “divinely designed with God’s purpose in mind.” Christians should long for these special people to be a part of their church family. Christians should recognize that the church itself is disabled if these special people are not included.
What else would you like to share?
God loves us all. As humans, we tend to focus on the faults and insufficiencies of others. God sent Jesus to die for us so that we might be saved.
Those affected by disabilities are no more or no less precious to God than individuals that society reveres, such as athletes, movie stars, and other public figures. God doesn’t exclude individuals affected by disabilities from his offer of salvation. Neither should the church, either by its action or inaction, exclude these precious people from fellowship. I love what the Bible says in 1 John 3:18, “Dear children, let’s not merely say that we love each other; let us show the truth by our actions.” (NLT).