For 17 years, we have done everything possible to keep our son with autism out of the hospital—even when he has seizures or yearly bouts with pneumonia. Home is always the best place to be. Going to a hospital just strikes my heart with pure terror.
This past summer was challenging. Jac had 2 major spine surgeries. He was hospitalized for a week each time. We had to be creative to keep from going stir crazy. With the help of the hospital’s Life Specialist—and some tricks of my own—we survived.
My first idea was to decorate his hospital room with pictures of our family and his teachers and therapists. This helped him remember those people were still a part of his world.
I also had the hospital therapists get me pictures of places in the hospital that I knew my son liked to see on other floors—like the pirate ship, popcorn machine, the aquarium, the playground, and the train depot. We used the pictures like a treasure hunt. We would push him around the hospital to find these objects. When he did, he could peel off the corresponding “icon” from the worksheet we created. (Thank goodness for Velcro!)
When we could take the wheelchair outside, I grabbed one of my many cans of silly string to take with us. Silly string makes everything sillier and funnier!
You can’t beat electronics for a happy distraction for our son, his favorite movies stayed on almost all the time. Something about Buzz Lightyear and Woody and the gang that just helped him be at ease with the new strangers entering the room. We would always ask the staff who their favorite character was and shazam, they now entered the wonderful world of Jac!
Once you get doctors and nurses stepping into the world of our kids, life is so much easier for everyone. Thank you Scottish Rite. To Infinity and Beyond!!
Here is how you can create a hospital care and survival kit for a hospital visit.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.