15 May Encourage One Another
By: Elaine Tomski
Sometimes we ask, “Why?” Why are families given children with special needs? It’s a good question. But on this side of Heaven, we will likely not find the answer. Perhaps the better question to ask is, “How?” How can we help families with special needs children? How might we encourage them in word and in deed? These questions do have an answer.
Let me introduce to you the Hochstetler and Weaver families. They are graciously permitting us to peek into their daily lives. Through them, we will experience a bit of what it’s like to meet the challenge of parenting special needs children. We will also be able to understand the encouragements they are uniquely able to give and the support they and other caregiving families critically need to receive.
Meet Jared. He communicates with bright eyes, a ready smile and sweet sounds, but no words. At age five, he scoots along the hardwood floor and grabs the attention of everyone in the room. More importantly, he holds each one’s heart. To his parents David and Betty, brother Adam, and sister Heidi, Jared is much more a blessing than a burden. He’s a valued member of the Hochstetler family. David says, “We’ve been blessed through him.” After his birth, Jared was diagnosed with the rare genetic disability known as Partial 9 Trisomy. Children with this chromosomal syndrome are affected by developmental delays in crawling, walking, physical growth, and formation of the face and skull. Because this condition is rare and its effects vary widely, the Hochstetler’s discovered at the very beginning that their Jared was a puzzle yet to be solved.
Just down the road, we find another family with unique challenges. Steven and Sue Weaver dearly love their three boys, Josiah, Derek, and Lukas. Both the oldest and youngest sons have an inherited disorder known as Propionic Acidemia (PA). In the Amish and Mennonite communities across America, there are at least 100 patients with PA. This metabolic disorder prevents the body from breaking down certain proteins. Although newborns are tested to detect this abnormality, in years past many cases have been missed and only diagnosed after damage to a child’s organs and tissues has occurred. In the Weaver’s case, their oldest son Josiah was not diagnosed until after their youngest son Lukas was found to have the disorder at birth. Josiah had been sickly for his entire young life, so when they learned the possible effects of PA for newborn Lukas, the Weavers realized immediately that Josiah had been experiencing the same thing. Unfortunately, the late diagnosis had already resulted in muscle damage for then 6-year-old Josiah. Left untreated, PA can cause neurological disorders, seizures, heart failure, rhythm changes in the heart, muscle weakness, fatigue, or severe dehydration causing a metabolic crisis accompanied by coma and death. Thankfully, with proper treatment, many PA patients can grow to adulthood and even have families of their own. Although Josiah and Lukas look like typical children, they experience many physical hurdles typical children do not.
Having children with a rare genetic disorder brings extra stress to families. Betty says, “Routine is important for the day. Life just works better that way.” Jared’s day begins early since he’s the family early bird. There’s no sleeping in at his house. Except for a few sips of Gatorade, Jared takes nothing by mouth. Instead, he receives liquid nourishment from feeding tubes throughout the night and three times each day. Monday through Thursday, Jared enjoys attending Tri-County ESC Preschool. His parents agree that the teachers and aides at this wonderful school are more deserving of awards than celebrities or sports stars. They say, “These people are the real stars.” Jared now uses a wheelchair at school as part of his routine. One of the most exciting events in Jared’s day happens each afternoon when he hears the basement door creak open and bang close. His eyes brighten as his smile grows. Dad is home!
At the Weaver household, routine is also essential. Their daily schedule includes lots and lots of medication. There are 12 different medications given at 4-6 intervals throughout the day. Dr. Holmes Morton, a geneticist in Belville, Pennsylvania, has developed a powder formula for the boys to take mixed in liquid. This formula provides many of the vitamins and mineral supplements the boys don’t otherwise receive due to a restricted diet. They’re on a protein-restricted diet requiring foods to be systematically measured and recorded into food diaries. Using food scales for precise records is a necessary part of the medical care. They need enough protein for their growing bodies, but no more, since extra proteins can injure the heart, liver, and brain. Ten-year-old Josiah says, “I’m allowed to have 50 grams of protein per day.” Because Lukas is smaller, his requirement is less, which means different numbers to track. Meal plans include lots of fruits and vegetables, almond milk and egg substitutes. Steven says, “My wife has come up with some very good recipes for lower protein foods, like pancakes and home-made ice cream.” In addition to medical and food routines, physical therapy must be accomplished daily. The boys carry meds with them to school and Josiah carries an Automatic Defibrillation Device, in the event his heart acts up. Sue says, “Routine and discipline are just part of our lives.”
FINDING THE GOOD ALONG THE WAY
Another consistent part of life for these two families is to find the good along the way. In looking back, the Hochstetlers see the overwhelming amount of support they received after Jared was born. He was such a tiny baby with an unknown future. “There was so much to do,” says Betty. “But, you learn, you try your best and God helps you.” It was an amazing time because God carried them through. He gave them energy even though they might sleep only 2-3 hours a night. When Betty was down, David had the energy. When David was down, Betty had the needed encouragement. David adds, “We can look back now and see these things because we’re past that pain. But, I just want to tell anybody, don’t stress. Don’t worry. It will all work out. It’s amazing.”
They are grateful for the much-needed support of family, church and friends. Following his birth, Jared was hospitalized for four weeks in Akron. “Many church members came all that way to visit, a lot!” says David. Grandparents, of course, are a ready help. Because Jared required protection from germs, Betty’s mom cared for him every other Sunday, so that David, Betty, and the other children could attend church. A true godsend! In Jared’s first year, Betty’s then 15-year-old sister was a huge help. She gave a lot of her time and the extra hands needed to bring relief. Their family has gone the extra mile. They have been teachable and willing to learn Jared’s special medical requirements, such as feeding. “The family says, ‘Don’t even hesitate to ask. We want to help,’” says David. The Hochstetler’s older children were often cared for by family since Jared was in and out of the hospital for the first year and a half of life. Respiratory issues meant he struggled to breathe. David and Betty noticed the trouble seemed to come from small airways. In response, Jared had surgery to bring his chin forward and later his tonsils removed. He has not needed the hospital since and now breathes easy.
Good medical care is another reason to be thankful. Jared wouldn’t be here without the help of the medical community. They didn’t have many answers in the beginning because Jared’s condition was severe. Not many people had been on this journey before David and Betty. When there were no answers, God gave encouragement through others at just the right moments. Betty was so frustrated, not knowing how long their Jared would survive. She prayed for God to give her the answer. Instead, God sent a special needs mom and new friend from Akron who gave the plainest answer. She said, “It doesn’t matter. Just love your child.” Such wisdom. Betty says, “That helped me so much! It doesn’t matter what’s ahead. Just love them.”
It’s also good to appreciate the milestones. Although Jared can’t talk, he finds ways to communicate as he smiles, comes close, and expresses love and gratitude with inviting eyes. He glows with personality. Although Jared can’t walk, he continues to find ways to travel. He used to scoot only on his back, now he scoots in an upright position. This progress means Betty literally enjoys continually patching holes in his pants. Jared has outgrown a toddler size walker. No problem. With large castors applied by dad, “Jared now moves in a walker on steroids.” He is also becoming more mobile in his wheelchair. One of Jared’s favorite activities is to spend time on the porch, pushing the porch swing. Bang, bang, bang! Does it frustrate David and Betty that Jared has marked the siding? Oh, no! They love the reminder of Jared’s ability to move and affect his world. David tells of a sacred milestone revealed one evening, “When we say grace, we hold hands. One night Jared reached over to participate in hand holding prayer.” Nowadays, after prayer, they all clap hands. This is one small way they celebrate prayer and family worship with Jared. What a blessing!
The Weavers can also count many blessings. When it comes to support, Steven and Sue speak in unison, “Family! That’s huge. Grandparents give support with dietary needs for our boys. They make sure there’s always something the boys can eat at family gatherings.” Sue adds, “And a listening ear. It helps to have someone who understands.” When the boys get sick, the Weavers are up throughout the night, often for many nights. Keeping the boys hydrated when vomiting is essential for survival. Dehydration must be avoided at all cost with Josiah and Lukas. Their bodies are literally in danger when dehydrated. “Often family members will come the day after sleepless nights so I can take a nap,” says Sue. Family is vital. Church friends also provide much-needed support. “Lukas was born eight weeks premature. During that time church friends brought in meals. The young folks also came one evening to do yard work and stack firewood. They helped us stay on top of everything,” says Steven.
Sue finds encouragement in simple things, like the daily devotional flip calendar sitting above the kitchen sink. A phone call from another special needs mom who understands. The random acts of kindness given and received by other special needs friends. Sue treasures many friends she wouldn’t have known except for the boys’ needs. “It makes me sad to think I wouldn’t know them otherwise. I have come to love them so dearly.”
“Some days,” Sue says, “It helps to face reality. I can’t be supermom. There are days I can only take care of the kids and have to let everything else just be.” She adds, “Sometimes I just go outside for a walk, get some fresh air and think of something or someone else for a while.” Most importantly, the Weavers cling to their faith. “Without that, it would be pretty much impossible to get on. Otherwise, life would be hopeless.” Through faith in God, they stay positive by noticing the good rather than dwelling on problems. They are grateful for the annual gathering where several special needs families meet. They enjoy a day of understanding, sharing problems, finding answers and giving support. They say, “It’s a refreshing day to get together and have fun.”
MEDICAL SUPPORT AND ENCOURAGEMENT
An ongoing blessing for these families is the New Leaf Center in Mt. Eaton, Ohio. Steven says, “We are like family there.” Sue adds, “New Leaf has been wonderful in helping us find answers. They understand this community’s genetic issues.” New Leaf Center provides medical care for special needs children with inherited disorders. A nonprofit organization, they are funded largely by individual donors, businesses and churches. They serve as a medical home for their patients.
Another medical blessing is the Ohio Crippled Children’s Fund. The families of special needs children have medical expenses many other families cannot imagine. They are grateful for the churches, businesses and community volunteers who support their children’s needs by way of the Crippled Children Benefit Sale held every July in Kidron, Ohio. This year marks the 21st Benefit Sale on July 1, 2017.
ENCOURAGEMENT FOR OTHER SPECIAL NEEDS FAMILIES
The Hochstetlers and Weavers are grateful for each other. Not only do they live on the same road, they also live with the same challenges. In an effort to help other families beginning the special needs journey, here are some insights gleaned from their experience…
- Never compare your child to other children. Each one is unique and special. A blessing.
- Don’t feel guilty to wonder, “Why me?” At first, it seems your dream has come crashing down. You were expecting one path, but another path is okay, too.
- It’s frustrating to try to figure out what your special child’s future will be like. We find it works better to take one day at a time.
- Be your child’s advocate. You know your child better than anyone. It doesn’t matter whether it’s at the doctor, at school or in the community. You know when something is wrong. Since they are too young to speak for themselves, they need you to speak for them.
- Make time for your husband, wife, and other children. You need each other. Don’t feel guilty to have someone care for your special needs child so you can focus on others.
- Depend on God. Read scripture to be reminded of his goodness.
- If you can journal your experience, it’s amazing to look back and be reminded how God provides.
HOW CAN THE REST OF US ENCOURAGE SPECIAL NEEDS FAMILIES?
There are so many ways. The Hochstetlers and Weavers are blessed to remember multiple times of much-needed support. Here are ideas to help us give encouragement…
- Just be there. Your presence matters more than the right words to say.
- The first months are difficult. Simply love and serve. Hearing many bits of advice is overwhelming when special needs parents are getting used to a new reality. Perhaps it’s best to let a parent ask for advice before giving it. Hope is needed, not grief.
- Listen. It is helpful for others to realize special needs families experience extra stress. This stress can bring frustration and tears. Choose to understand without judging.
- Learn medical ways to assist a special needs child so parents can give time to other children as well. They need to feel special, too.
- It inspires every parent to receive affirmation. A note of encouragement or a spoken “Good job!” is energizing.
- Pray. Your prayer support gets us through.
Dr. Olivia Wenger from New Leaf Center also gives words of wisdom based on her relationships with special needs families. She’s discovered that just as a special needs mother desires a friend who can relate, her child also needs a friend who understands. She says, “Friendship is just as important for a special needs child as for a typical needs child.” She gives us these helpful tips…
- Be a friend and encourage your child to be a friend.
- It’s easy to give advice to people without realizing that that person is doing their best. Many special needs families receive conflicting advice from well-meaning people. This discourages and confuses the already stressed parent.
- Rather than giving advice, please ask… How can I help?
- Listen to understand the needs of a particular family and come along side to support in the way needed. Needs vary from a listening ear to a driver, from help with housework to financial assistance, from medical supplies to supplemental formula. It takes a lot of sensitivity and not immediate judgment when assessing the need.
Dr. Wenger also wants to encourage special needs parents. She says “It’s okay to ask for help. It’s scary to do because we want to be in control, and we are giving up control to ask for help. But actually, sometimes asking for help from other people is the only way out.”
CLINGING TO EACH OTHER AND TO THE LORD
One of the benefits of having a special needs child is the way it unites a married couple. Living with continuing trial creates a strong bond between husband and wife. The Weavers find clear communication to be essential. They try to use grace and not take the stresses personally. Sue says she was overwhelmed when they discovered their 6-year-old had heart trouble. That night she knelt by their sleeping child attempting to pray but found she could only cry. Steven had sensed her need and came upstairs to kneel beside her. She says “We prayed together and I felt stronger.” Their fear and need were surrendered to God.
As for the Hochstetlers, Betty says, “We wouldn’t be where we are now spiritually without the challenge of Jared’s needs.” David adds, “As I look back, even a year before Jared was born, I can see He was getting me ready. He has shown us His hands. We’ve seen God work in ways we would not have known without Jared. Everything narrows down to God. I wouldn’t have it any other way.” Although Jared can’t speak, he touches people. David says, “Having a special needs child does a lot of good things. It brings a family and a church closer together. It is such a blessing.”
Are you encouraged, reader? I am, too. Let’s take what we’ve learned and use it. Let’s use the trials in life to draw us closer to the Lord. And let’s continue to encourage one another in word and in deed.
“Wherefore comfort yourselves together, and edify one another, even as also ye do.”
1 Thessalonians 5:11