Hope That Helps: A Caregiver's Thrival Guide For Special Needs

By Lisa and Randy Weist

Caregiving for a family member with special needs can carry a heavy burden for many who are not equipped or prepared to provide such care. Many families become overwhelmed and relationships suffer as a result of fatigue and hopelessness. Learn how to avoid the pitfalls from explorers who have already traveled this road ahead and can guide you to a place of Thrival instead of mere survival. From our years of firsthand experience caring for our son with autism and also from our careers in the mental health and education field, we share our mistakes and triumphs. This helpful resource combines research-based methods gleaned from the service providers and experts with whom we have collaborated along our journey of twenty-three years. Each time we are asked for advice, we are happy to share and always end our conversation with the words "Hope that helps!"

• Language: English
• Publisher: Covenant Books, Inc.
• Release date: Jul 3, 2020
• ISBN: 9781646701605

Book preview

Coping with the Diagnosis

Not exactly the news a mother wants to hear. Feeling numb and clueless, I sat dejected in my vehicle in the parking garage of the Weisskopf Child Evaluation Center. In my mind, I replayed the diagnosis that I had just heard from the autism evaluation team. The uncertainty of my son’s future dropped on me as if the full weight of the parking structure came down with it. I felt like I couldn’t breathe. I tried to turn the key in the ignition, but I didn’t have the strength. I just wept inside.

As a single mom, I wanted to be strong for my two young children. I was never one to burden them with adult matters. Fighting back the tears, I decided that I could release them later in a safer place when I wasn’t operating a vehicle. I took a deep breath, mustered up the last of my physical energy once again, and started the engine. I drove my children home after eight full hours of evaluations, fed them supper, and put them to bed after bath time. Dream after dream of Michael’s future high school prom, graduation, college football career, wedding, and grandchildren slid away in my mind like a runaway truck on an icy hill. It was futile to even try to hold on to them. I fell into an exhausted heap in my bed and cried silently until morning.

Randy Describes the Initial Impact on Him

This is a dad-version of first coming to grips with it all. It began well. That is the first part. We did it so nicely. A northward pilgrimage to visit family in Ohio and Indiana. A two-leg trip, about three and a half to four hours each leg. Lindsey and Mike were just little. She was about five or six, and he about three or four. The early start with the hope that they would sleep for a long time was an inspired idea. When they woke it was a quick stop for necessities, breakfast, and movement.

After that, we stopped often to feed, water, and walk. Lindsey was brilliant with it all, and Mike did so well. We were a bunch of happy happies. A different place, a different schedule, regardless of the adventure and enjoyment, resulting in a different outcome. Sleep was not exactly regular. Lindsey and cousin, Kelli, lived in their own brilliant little world as usual with her older cousin, Ruthann, participating but more often supervising, guiding, and directing. Mike was quickly wearing down, not sleeping, needing more and more help to deal with anything and everything.

Then the second part. I discredit myself for this part of things. There was no real plan or preparation. It was a late start for the first leg of the journey southward to Ohio, and Mike was already unhappy. The car seat was a prison and we were unhappy subjects of his incarceration. By the time we arrived in Ohio for the night’s stopover, he was in full, incendiary meltdown. With our arrival a peaceful home was turned into a nightmare of autistic over stim. Nothing seemed to calm him down.

My next fatal mistake took place. I made the executive decision that we were not going to subject them to it anymore and would saddle up for the ride back to Hazard. Wrong! Stupid! To say that he screamed the entire way would be an exaggeration. He only screamed most of the way because a little feller needs to take a breath occasionally.

Four hours later.

Lindsey came out of the car looking like a wrung-out washrag. I do not know how she, at her age, endured it. Lisa, as tough as she was, should never have been subjected to that. Me? I’d seen a thing or two and was still a bit shell-shocked. Mike? He was pretty much done for, exhausted, slept well, and woke up the next morning in fine spirits. I finally accepted that something was very wrong. Worse yet, it was not something that I could fix. This was when my heart truly broke. But a man isn’t supposed to let any of that show, is he?

Lisa’s Backstory

I went forward as Billy Graham gave the invitation to accept Christ as my Lord and Savior during a crusade in Cincinnati, Ohio, at the age of eleven. I followed up with baptism at Bullittsville Christian Church. As a child, I knew enough to know that I wanted to go to heaven. I also knew I was supposed to read my Bible and memorize Scripture, and I did for a while. Years went by. I had a half-hearted commitment until I graduated from high school, where I had made several poor life choices with devastating consequences. I decided it was time to be more dedicated to Christ and become a more mature Christian, so I chose to spend the next four years studying to become an elementary teacher at Kentucky Christian College (now University), in Grayson, Kentucky. That’s where I met Randy.

I fell in love with Randy Weist as he was preaching in the campus chapel. He described a scene in nature that called his heart to worship. I’ll never forget his words: As I looked out over the gorgeous mountains at Grayson Lake, the fall leaves splashed in colors of gold, crimson, and browns. They were having one more last glorious fling before going to sleep for winter. I watched a droplet of dew on the remains of an old spiderweb highlighted by the sun sparkle like a diamond. And I just stopped in my tracks to worship the One who made it all.

He captured my heart with one look from his big, beautiful, brown eyes that radiated ever brighter whenever he was preaching or teaching about our Lord. The Light reflected in his eyes drew my heart to his. My heart and soul were forever bound to this man. I always wanted such a man as this. One who saw God everywhere. One who had a heart of compassion for the lost. One who had a burning passion to reach and rescue them. It didn’t hurt that he was tall, dark, and handsome either.

He persisted in calling me for a date. But I was once bitten and twice shy; I told him that I was busy with schoolwork and traveling with the basketball team and really didn’t have time. But he persisted. Several walks, talks, and dinners followed. During a Valentine’s dinner in 1989, our growing commitment for one another was revealed. Our hearts raced as Randy reached across the table to take my hand.

Randy’s Backstory

Long before, I had made myself a wanderer. My senior year of high school was not yet finished when Dad accepted a new position in Michigan. Upon graduation, I left the only place that I had lived in for very long and took a job. A while there, a few months somewhere else, in and out of colleges, a year or two elsewhere. There was always an adventure, a new thing to try, or place to go. The Army actually paid me to continue the pattern, and with it all I had grown a bit wild. Finally, I came back to faith. Rather than the other work or university options I could have pursued, I just wanted to spend time diving into God’s Word. Preaching, teaching, pastoring, these things were not in my radar. However, I was steadily recruited into them. Grayson, Kentucky, was also meant to be just a stopover for learning and growing.

I thought her a shining thing as she walked into the cafeteria that morning. She walked past as if no one existed, not making eye contact with anyone, eyes slightly down. The breakfast crew was in session; a couple of professors, some older students, my roommate, and me. We met early each day for coffee and conversation during the week. I had lingered longer than usual this chapel day, looked up, saw her, and stopped mid-sentence. My roommate gave me an odd look, as did my mentor, Dr. Benic Hampton. Then Benic followed my gaze, looked back at me, and grinned. When I came to my senses, he was still grinning and gave me a questioning look. I scowled back but did not continue with what I had been saying, because I surely could not remember what on earth I had been talking about.

I began staying later at breakfast, walking around campus more between classes, observing the foot traffic more attentively, and generally keeping an eye out for her. The other young ladies that I had thought interesting seemed to fade to gray. In frustration, I finally did what no man wants to do. I asked for help, finding out what I could about her.

Then I, uncharacteristically hesitant, approached her. Bang! Stone wall. What? Had a hairy talking wart sprouted from my chin overnight? Was something hanging out of my nose? It was unnerving, but leaving this all alone was not an option for me. Something was there, though I had no idea what it was. I pursued her. A classmate, Jeff Dye, came to me asking about one of Lisa’s friends, Kim Freholm, and I succeeded in setting up a double date for the upcoming senior and junior formal event. After that, a slow and patient time followed. Walks, talks, and dates confirmed what I already knew but she had yet to realize. I was already hers. She was unconvinced about me.

By the time I saw Lisa that day I had begun to dream a huge dream about the church in the world and ministry. After that day, confirmed over the months that followed seeing the great beauty of her heart, I knew she and I had to be partners in life serving God. I set up an elaborate marriage proposal at the yearly Christmas madrigal dinner show with the possibility of a grand failure right there in front of everyone. She said yes. This is how I saw her:

Her Symphony

She is a symphony

Many parts

Creating a greater whole

Each separate movement

Admirable in itself

Blends in astonishing beauty

Carried along by each phrase

Every refrain enchanting

Entranced by her rhythms

She is a symphony

Making me whole

From many parts

—Randy Weist

Lisa Recalls the Start of a Dream

A couple of years later, during the Christmas madrigal dinner at Kentucky Christian College in December of 1990, Randy secretly pre-arranged for us to be chosen for a part in a Christmas song. I had no idea what was about to take place when the singers selected audience members to act out all the various parts of the Twelve Days of Christmas. They had each participant stand in front of the gym stage in a line. Each time they sang two turtledoves we flapped our wings and cawed out loudly like silly birds for the entire duration of the lengthiest Christmas song ever. But on the last refrain, as it was our turn to act again, he didn’t. I looked at him to see what was wrong. He was down on the ground on one knee. Before I could ask him if he was okay, he pulled out an engagement ring. As the crowd in the gym erupted in cheers and clapping, I fell hugging him around his neck and accepted his marriage proposal.

After our wedding, we rented a tiny, three-room apartment in an old renovated school building in Hazard, Kentucky. Life involved church ministry and working in a childcare facility. We enjoyed each other, the work, and played the King’s Quest computer game late in the night just for fun sometimes. One day, as we were celebrating our new freedom in marriage with a playful spirit, I jumped up and down on the bed. I was laughing and called out to Randy, Look! I’m jumping on the bed, and my mom is not here to tell me to stop it!

He decided to join in on the fun, took a running leap, and belly-flopped on the bed, which promptly broke the bed rails. We lay on the floor in a pile of fools, which consisted entirely of the two of us. I felt like Eve after she handed the apple