How to make hospital stays easier for special-needs kids

Written by: Julianne Neely

These are the things you need to have on hand if you're raising a special-needs kid.
Photo credit: Courtesy of Julianne Neely
 
There have been a few strategies I have learned along the way of being a special needs parent that have been so helpful for our family. One such strategy is having a hospital “go” bag. Already having a hospital bag packed has been a major relief at 2am when we are leaving for the ER, because we don’t have to run around scrambling for essentials for what may be a few days in the hospital. We keep our hospital bag in the car at all times—we don’t always go to the ER from our house, it might be from school or an outing.
 
For our family we find comfort in the familiarity, in the few special things that make our children's hospital a home away from home. It's strange, but I don't panic or even dread hospital stays, I just accept them as a part of our journey. I know that we will have everything we need, we will be well cared for and that we will go home soon. Normalizing the experience helps us quickly adjust to hospital life, jumping right in to the pace of hurry up and wait. I focus on our routine: unpacking, meeting the team, requesting our essentials, getting settled and waiting for rounds. 
 
Being a mom who has spent many nights in children’s hospitals, I consider this to be our essential packing list. Your list might look a little different, but hopefully this is a helpful starting point. (If you know a parent who is unexpectedly spending a few days alongside their child’s hospital bed, these are some great things to bring them.)
 
Must-haves:
  • A phone charger. Obviously.
  • Comfy pants and a sweatshirt for parent. I rushed to the ER in shorts and a tank top once and thanks to max AC in the hospital I had to wrap myself in blankets to stay warm!
  • Change of cozy clothes for child. Yes, they have gowns for children, but I find that wearing our own clothes when possible makes us all feel more normal. If nothing else it’s nice to have clean clothes to go home in.
  • Shower essentials. Flip-flops for the shower if you get grossed out by shared showers like me, hair tie, hairbrush, toothbrush, toothpaste, deodorant, face wash, contact lens case and solution. 
  • Melatonin for parent. Do you know how stinking hard it is to get decent sleep on that plastic hospital couch/bed thing?!
  • Multivitamin and probiotic for parent. You are now surrounded by germs, but really need to stay healthy!
  • Snacks for mom and child. (Or cash for the vending machine.)
  • Feminine hygiene products. Our children’s hospital didn’t have tampons when I urgently needed one.
  • Formula. We have gotten stuck waiting four hours for the formulary to deliver formula with a cranky baby!
  • The back-up lovie or pacifier
  • List of medical diagnoses, medications the child is taking and a copy of medical card
  • Grippy socks. The hospital ones don’t fit comfortably for me.
 
There are even things about hospital life that I start to look forward to, like padding over to the cafeteria and having someone make me an omelet at 2am, being able to focus all my snuggles and energy on one child, and, importantly, that someone else does the bulk of the laundry. 
 
But there have been dark times that have left me in what felt like a free fall. In those times, it was the familiar comforts that kept me on track until we could celebrate successes again. Celebrations will come, even if it's just celebrating the chance to go home and re-pack your bag for next time. 
 
Meet Julianne Neely at the Individual & Family Connection booth at the NPN Developmental Differences Resource Fair on Sunday, March 13!
 
Julianne Neely MSW, LCSW, is a business owner, special needs mom, foster-adopt parent and pediatric therapist. Julianne has become the leading expert in pediatric mental health in Chicago, where she owns and manages Individual and Family Connection. At IFC, she has the privilege to manage a team of amazing clinicians who are passionate about working with children and seeing them thrive.
 
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Posted on March 07, 2016 at 2:25 PM