When Tyson was very little, while walking up the stairs, he slipped and split open his chin and required stitches.
That event, before Tyson turned two, shaped all future visits to the Janeway Children’s Hospital emergency department.
In my mind, I can still picture him wrapped in a white sheet from the neck down as he screamed. His screams eventually went silent, and his lips turned blue from holding his breath, all while the doctor carefully stitched his gaping hole.
My words, however, do not accurately describe the extent of the trauma Tyson (and I) experienced.
When I think of all the poor choices I made as a mom, this one tops the list by a landslide.
At that time, I was new to the world of autism and honestly, I did not know any better.
I did not know that Tyson could have been given medication to help him relax. (When Mark returned with Tyson to have the stitches removed, he was offered this as an option by a different physician.)
I did not know that Tyson would never forget being restrained.
And I did not know that Tyson would forever associate the hospital with that traumatic event.
In the beginning, Tyson associated the entire building with that experience, which made going to our speech and occupational therapy appointments difficult.
As time passed though, Tyson would enter the building willingly, just not the emergency department.
For over 7 years, we have been working on repairing that relationship.
Part of that means me being a stronger voice for Tyson.
Just last week Tyson woke at 2:00 am crying with what seemed to be an ear infection.
As Tyson is nonverbal and still working very hard on communicating, we can only guess that his ear was paining as he was pointing to his ear and wanting me to push in on it. It’s unusual for Tyson to cry as he has a very high pain tolerance so I knew something was wrong.
One of the hardest parts of having a nonverbal child is seeing them in pain and having to guess what is wrong.
I tried very hard to get Tyson to take some liquid Tynelol but unfortunately, his brain just did not allow him to swallow the pain relief.
For those of you that have followed along with our story, Tyson has an extremely restricted diet. Unfortunately, this does not apply to only food he puts in his mouth, but to any liquids or medications as well.
So after about 20 minutes of him trying to swallow the Tylenol and a floor covered in sticky green liquid, we gave up.
Fast forward to Monday evening and I noticed Tyson’s outer ear was covered in dried blood.
Mark thought I should take him to the emergency department to determine if he had an ear infection. And although I knew he was right, I was very reluctant.
I hate everything about going to the ER department – the waiting, the exposure to germs (COVID fear is still very real in my household) and the knowledge that this would be very difficult for Tyson.
My thoughts race to Tyson buzzing around a very busy waiting room, the blood pressure that needs to be taken during the intake, the armband that he needs to wear and of course, a successful ear exam.
Part of being on this road with Tyson and having a better understanding of his sensory issues has led me to become a more assertive mom.
When the nurse mentioned the blood pressure, I calmly and assertively said we were going to skip that part. She asked me if we should at least try and I surprisingly and bluntly said no.
I explained to her that I wasn’t trying to be difficult but thus far, on all our trips, no one had ever managed to get a blood pressure reading for Tyson (but a good few nurses had gotten a kick or two). The experience of putting the cuff on his arm makes him so agitated, that whatever they try to do next would be that much harder because he was already at a heightened sense of fear.
So we skipped the blood pressure. Luckily the nurse put us directly into a room and we did not have to wait long to be seen by a doctor.
But our positive experience did not end there for Tyson had the most incredible kind, patient doctor.
She talked directly to him, explaining that she was not going to hurt him and that she was going to use her special light to see inside his ear.
She let him see the instrument first, and let him help her hold it while checking his ear.
She spent a solid 30-40 minutes trying to see inside his ear, giving him lots of breaks. Each time her hand touched his face (to steady her hand), he would cry and move his head.
We tried everything to reassure him. He would grab her hand and put it up to his ear as he wanted her to check his ear, but once she touched the side of his face, his instinct was to push her away.
She was very empathetic and said to him several times, ‘I know this is hard for you’ and ‘you are so brave’.
She was able to rule out a middle ear infection (swimmer’s ear) and saw part of his ear drum which looked fine.
It wasn’t only her kindness or her patience that was remarkable but also her compassion and understanding.
I have found for the most part, that there is a lack of understanding of autism in general when visiting the emergency department.
But that day was different, it seemed everyone was just a little more willing to make it easier for Tyson.
Is this a positive change that is occurring within the healthcare system?
Has there been additional training to provide professionals with the tools and education they need to better serve the autistic population?
Or was this an isolated incident of a beautiful physician accommodating Tyson’s needs? (A sincere thank you to Dr. Woodland who went above and beyond for Tyson.)
Autism families, what has been your experience when visiting the emergency department or the healthcare facilities in general? I would love to hear all about your families’ experiences!