The ALS Association

ALS Ice Bucket Challenge Progress

Raising a Family While Coping with ALS

A typical weekend for Tim Cacioppo often involves carting his four kids to as many as 12 hockey and basketball games. Although the commute can be daunting at times, there is nothing more in life that Cacioppo loves than being there for his kids and cheering them on to victory.
 
Before his ALS diagnosis, Cacioppo spent nearly a decade coaching his kids’ youth soccer and hockey teams. For a stay-at-home dad who prides himself on always being there for his kids, breaking the news of his diagnosis was really hard.
 
Introducing ALS to the Family
“When I got diagnosed, I really didn’t know what ALS was,” explained Cacioppo. “It took awhile for me to even grasp it and understand what was going on. My wife and I would discuss what we would tell the kids. Ultimately, we decided to tell them that I had a muscle disease and leave it at that.”
 
Cacioppo’s three boys are 13, 12 and 10-years-old, and his daughter is 7-years-old. Initially, the news didn’t stir strong emotions among his children. That changed a few months later when Cacioppo’s middle son wanted to know the name of the disease that his father had alluded to earlier.
 
“I didn’t know what to do, so I just told him,” said Cacioppo. “In school, he had learned about Lou Gehrig, so it really devastated him.”
 
Getting Children the Support They Need
Cacioppo made certain that all of his children were surrounded with the extra support they needed to cope with this difficult news. He and his wife met with the school counselor. Every once in awhile, they also have a relative or trusted friend check-in with the kids and talk with them about how they are coping.
 
“As of now, they seem to be alright with everything,” said Cacioppo. “It’s going slow. That’s kind of easing them into it.”
 
Cacioppo acknowledges that his kids are at the age where they don’t fully understand that if they talk to people about what they’re going through, it can ease the burden a bit. To spur that process along, he and his wife have found a support group that they plan to get involved with this summer.
 
Prioritizing Fun and Memories
In the meantime, Cacioppo is focused on making lasting memories with his family having already checked the top item off his bucket list—taking the kids to a professional hockey game.
 
The Cacioppo’s are now spending a lot of time traveling. Last summer, they hit the beach in Florida, rode roller coasters at the famous Cedar Point amusement park in Ohio, and floated down a lazy river with a group of friends closer to home in Nebraska.
 
Cacioppo is determined to pack in as much fun and memories as his body will allow. That means kicking this summer off with a camping trip followed by more family adventures.
 
He’s also busy creating an extensive video library for his wife and kids. Although Cacioppo may not be there to sit in the driver’s seat when it’s time to teach his kids to drive, he’s recording a safety-focused tutorial for them to watch when the time comes.
 
Building a Legacy
His videos will cover everything from cooking lessons to the “dreaded teen talk.”  Through these videos, Cacioppo is working to instill in his kids one very important lesson: think before you act.
 
Not only is Cacioppo working to ensure the longevity of his fatherly advice, he’s also making videos and buying gifts for special occasions down the road including graduations and weddings. Soon, he and his daughter will dress up and videotape their father-daughter dance to play one day at her wedding.
 
While Cacioppo is working hard to remain a vital presence in his kids’ lives well into their adult years, he’s also very focused on their day-to-day needs.
 
“Basically, I treat every day as a new day, and I try not get caught up in my disease,” explained Cacioppo who insists he hasn’t let ALS change his parenting style.
 
To help his wife and kids further maintain a sense of continuity, Cacioppo has begun the process of voice banking.
 
Cacioppo’s one piece of advice for other parents in his position: Don’t put off voice banking or making legacy videos.
 
“Initially, I wasn’t too worried about getting it done, and now my speech is going downhill quicker,” said Cacioppo. “I need to cram it all in while I still can.”
 
Resources
 
Powered by Blackbaud
nonprofit software