I think as a parent to a child who has special health care needs, it’s easy to forget just how fast things can change in our lives.
Last week, I was proud to have done most of my Christmas shopping. I was baking cookies with my son, Jackson. We had even organized the gifts for his teachers. Then, out of nowhere, Jackson started complaining of pain in his stomach.
For starters, Jac never complains of pain. So this was already a huge red flag for us. All of Jac’s life, we have done everything possible to avoid the emergency room. His doctors know how to handle his seizures at home with medication. And the ER is never a good place for someone with autism.
As luck would have it, we ended up not only going to the ER but being admitted. Jac had an infection and needed surgery. Over the years, our hospital stays have only been at children’s hospitals. But now, with the new spread of another strain of the COVID virus — and the fact that our son is 20 — we went to a hospital in our hometown. There was an urgent need to get him on IV antibiotics.
We soon realized that hospitals had changed greatly. The epidemic affected everything. We were placed on the surgery floor. As usual, we ended up educating many staff members about autism, sensory issues and the life of a family with a child who has special healthcare needs.
It’s so hard to educate people who aren’t used to working with our kids. First, our kids can’t be left alone, not even for two seconds. Any tubes attached are a prime target for being pulled on or out.
Also, the policy at our hospital is that only one visitor at a time could stay with Jackson. We had to quickly educate the staff that this couldn’t work due to his multiple disabilities and size.
I am the one who knows all his medications by memory. My husband is the muscle of our family. He needs to be with Jac most of the time, especially when Jac did try to pull out all his tubes.
We literally had to go to the top of the administration to get an exception to their policy. Clearly, hospital rules aren’t written for families who have someone with special health care needs.
What I have realized with this hospital stay is that hospitals are very short on staff. The nurses worked their tail-ends off. They were so grateful that my husband and I could stay with Jac during this crazy time.
All I know is that if you must go to the hospital, be sure and have an advocate. And take your patience because many people are in need of medical care during these unprecedented times.
This may be a good time to connect with other parents and share ideas.
Healthcare decisions should be based on the needs of patients, not their age. Pediatric patients are treated based on their size. The right dose of medicine is determined using their height and weight. Equipment is sized for their safety and comfort.
Categories: Diagnosis & Health Care
“What’s wrong with your child?” are the hardest words to hear. Finding a diagnosis for your child is one step in the right direction. Navigating the various challenges your child will face can be overwhelming. Keep showing up and facing the challenges.