Lights that are too bright. Sounds that are too high pitched and too loud. Sheets that are scratchy and pillows that are too hard or too soft. Foods that are different and meal times that are at “odd” times. And let’s not even mention bed or wake-up times.
When you are dealing with sensory issues, going to the doctor’s office or worse yet the hospital can be a guaranteed one-way ticket to sensory overload. Caden is 6 years old and we work hard to combat sensory challenges stemming from a sensory processing disorder as well as the complications that define autism. Honestly, we have a pretty predictable system in place at school (more or less anyway) as well as at home. When we travel, we travel fully loaded with the big guns—the brush, the compression vest, the sensory blankie, headphones, a chewy, and the ever important and distracting Ipad. We take his own pillow and blanket and favorite pjs and essentially settle into the hotel room as best possible. Our efforts have paid off as Caden generally loves hotels, although we do have to unplug the phones because he really really loves them and we do have to barricade the door ala Fort Knox style since he has learned to unlatch the locks! Honestly I am thinking with these mechanical abilities we may have a future engineer on our hands, but I digress…
Caden also has a primary immune deficiency known as hypogammaglobulin anemia. Essentially his body doesn’t produce enough protection against infections and has no memory when given things like vaccines or when exposed to diseases. So he not only gets sick more often, he often gets the same thing over and over again. Caden also is highly allergic to two of the predominant classes of antibiotics: penicillin and sulfa. Combine all of this with the only real treatment for his disease being very long IV infusions every 28 days for the rest of his life and we are rapidly becoming experts in the hospital (we get a little extra practice as his sister has the exact same “rare” disorder).
So how do you handle the hospital with sensory/autism issues? We’ve started taking the exact approach that we do when we travel. We pack strategically to make the hospital room as home-like as we possibly can. We start with the basics—Caden’s pillow and blanket. We’ve even been known to pack a sheet from home to have him lay on so he doesn’t have to have contact with the “itchy” sheets. This is a helpful tip as well if you deal with as many allergies as we do—hospital laundry soap may or may not be the hypoallergenic brand that you need. Just be careful to grab your own supplies when housekeeping comes in or you will be rooting through a massive amount of really gross laundry in the hospital basement trying to find blankie—or so a “friend” told me.
Then we accessorize with favorites from home. I’d love to give you practical advice and say leave anything that can’t be washed at home in case of “GI incidents,” but it just isn’t realistic…a favorite toy is a favorite toy regardless of how the child is feeling or “GI system” is “behaving.” Just find your own strategy for washing and sanitizing those beloved stuffed toys and pillow pets or ask me because I’m getting pretty creative in my efforts.
Favorite videos from home are always helpful. Honestly we’ve found most hospitals have DVD or video players that they can bring into your room if one isn’t already available. The goal here is to distract the child as well as to block out as many hospital sounds as possible. Speaking of noise, if the nurse is in the room taking vitals, you can request that volume to the monitors being turned off. Monitor sounds are really only necessary when the nursing staff isn’t present in the room; even then if the monitors are being watched from a central location, ask if the in-room alarms are necessary. A few years ago Caden was in ICU, and he had a full set of monitors including a heart monitor. The alarms would regularly alert and it would startle us all—the nurses told me that they were watching the monitor stats from the desk and didn’t really need the in-room alerts and offered to turn them off. Caden was still being safely monitored without constantly being startled and upset by the high pitch noises.
You can always ask the nursing staff and/or your doctor as to which parts of their day/night routine are absolutely necessary and which can be altered to meet your child’s needs. You, of course, have to be realistic here—some things are simply medically necessary and the reason why you are in the hospital. But other things are procedural and weren’t written with your child in mind—you won’t know unless you ask. Again personalize where you can: the hospital we regularly attend only has brown coban (the wrap that goes around IV sites); we bring our own (assorted colors) so that there is some choice in the process—this gives Caden a sense of control that helps while in no way impeding the medical process.
See if there are windows in which meals can be delivered and if there are any options. Some hospitals have gone to a more room service type approach which can help you stay closer to the schedule that you follow at home with foods/drinks that the child is familiar with. Our daughter was at a hospital that didn’t serve vanilla soy milk so we….yea you guessed…. we asked if we could bring some from home. We turned the milk into the nutrition office in a new unopened container, they checked it out, and it was delivered with her meals like it would have been at home. Again you have to be realistic—if you are there on a dietary restriction, you’ll have to follow the regiment prescribed, but when there’s flexibility you should use it.
I’ve got a hundred more examples, but the long story short is that you should ask. We’ve found most hospital staff members want to help your child be comfortable because anxiety can be counterproductive to the recovery or healing process. They like having parents who are participating in the process. Let’s face it—you all want the same thing—for the child to go home as soon as possible.
Now “hypothetically” if your son has a particular fascination with numbers and has started timing how long it takes for a nurse to get his IV started as a coping mechanism it probably doesn’t hurt to take chocolate to the floor from time to time or so a “friend” has told me.