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 so proud of having done the bulk of my Christmas shopping and baking cookies with my son, Jackson. We even got teacher Christmas gifts organized.
Then out of nowhere, Jackson started complaining of pain in his stomach. Jac never complained of pain, so this was a huge red flag for us. All of Jac’s life, we have done everything possible to avoid an emergency room visit since the ER is never a good place for someone with autism. His doctors have given us tools to manage various conditions, like seizures, at home with various medications.
Upon Jac telling us about his stomach pain, 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. With the spread of a new strain of the COVID-19 virus, and our son being 20 years old, we went to a hospital in our hometown. There was an urgent need to get him on IV antibiotics.
We soon realized that hospitals have greatly changed. The pandemic affected everything. We were placed on the surgery floor. As usual, we ended up educating many staff members about autism, sensory issues and the needs of a family with a person with special health care needs.
It’s so hard to try to convey this essential information to people who aren’t used to working with young adults with disabilities. They can’t be left alone, even for just two seconds. Any tubes attached are a prime target for being pulled on or pulled out.
The rule at our hospital is that only one visitor at a time could stay with or see Jackson. We had to quickly educate the staff that this wouldn’t work due to his multiple disabilities and size.
I know all his medications and allergies by memory. My husband is the muscle of our family. He needed to be with Jac most of the time, especially when Jac would try to pull out all of his tubes. We had to go to the hospital administration to get an exception to their visitor policy. Advocating for your child is a must in the hospital.
What I have realized with this hospital stay is that the hospitals are very short on staff. The nurses worked so hard. They were so grateful that my husband and I were able to stay with Jac during this crazy time.
The need for medical care has increased significantly during these unprecedented times. So, if you must go to the hospital, be sure and have an advocate with you and make sure you’re ready to be patient. For resources on how to speak with your healthcare provider and advocate for your child, visit our Healthcare Planning resources.
“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.