This is the second of a two-part post on my recent visit to the Emergency Room with my son. He appeared to be in excruciating pain trying to urinate. Right after a rare California snowstorm. When I did not have the car. And I had to figure out if it was physical or sensory or what, cuz, yeah, you know…he has ASD…
I had to call the ambulance to come get us. Before calling, I had this exchange with the little guy:
“We have to go to the hospital so the doctor can fix the boo-boo. Mommy can’t fix it. The doctor has to make it better. Can you go to the hospital?”
“Okay. I’m calling for an ambulance to pick us up. Can you ride in the ambulance?”
“Go with mommy! Go with mommy! Mommy to go!”
“Yes, mommy will ride in the ambulance with you. I will be with you the whole way. Can you do that?”
The dispatcher was, as to be expected, a calm woman. I told her to warn the ambulance personnel that my son is autistic and that he would freak out if he heard a siren. She assured me that she would advise them to give us a silent approach. The ambulance on the way, I got us both ready.
I knew I would need the iPad above all else to keep him busy and distracted. Note for the dad. We waited. I reminded him several time of what was coming.
First to arrive was a fire department pick up truck. Having practiced law for a long time, I knew that the ambulance would not be the only vehicle dispatched. I knew the fire department would be first to arrive. But I was not thinking like a lawyer. I was thinking like a mother. A worried mother with an autistic son that was going to have to ride in an ambulance. I did not prepare him for the pickup truck with fire department personnel.
The pickup truck carried a female paramedic who took the basic information from me. The whole time my son, was yelling, “Bye-bye! Wave! Good-bye! Go!” to the paramedics and trying to push them out the door with one hand and hold his crotch with the other. I was holding him and answering questions. Then, he said, “Need to use the restroom, men’s room. Wanna go potty!”
So while the paramedics waited, I took him to the bathroom closest to the front door. It was fruitless. However, he was wailing and spelling so the paramedics got the picture.
Meanwhile, the ambulance arrived and my son’s attention was distracted to it. He actually opened the front door and walked outside to see the ambulance. Now, the trick would be to get my son inside. He enjoyed staring at the ambulance but refused to get in.
I stepped up to get in and he immediately jumped up after me. He sat down on a padded bench next to a stretcher. I had to lift him onto the stretcher where they wanted him to be and then they put a seat belt across his middle.
Then they kicked me out. They told me I had to ride in the front. I was certain there would be a meltdown. Oddly, there was no meltdown. I sat up front and told him I was still there. He was fine. He had the iPad.
This was the slowest ambulance ride known to man. And the quietest. The ambulance driver said not one word to me the entire time. I have no idea why he did not speak but I didn’t really care. My only concern was to get my son some help.
Once we arrived, and they opened the back door, my son tried to get off the stretcher. Once he realized he was getting to ride on a bed with wheels, however, he did not fight it. I did not get the feeling he was scared. The ER personnel sent us to the registration desk instead of placing him in a room. This was weird. For everyone.
Out front, my son got off the stretcher and immediately tried to wander off by a wall fountain he knew from previous visits. I retrieved and corralled him next to me while I signed registration forms. The registration clerk was confused as to why I was there and whether she was to send me to triage or to a room.
An elderly female volunteer in a purple jacket approached my son while I was registering and asked his name. He answered. “And what is your last name?” she asked. Now, mind you, she was not registering my son or providing care. Her job was to give visitors directions. I don’t know what she was doing talking to my son.
My son did not respond. While I was listening to the registration clerk and figuring out where we were supposed to go, the volunteer continued to ask my son his last name. I looked up and she asked me, “Doesn’t he know his own last name?” I answered by saying, “He’s autistic.” She rolled her eyes at me, shook her head and walked away. Really? I had no time for her however because immediately after that, a very kind, tall nurse took us back to a room.
When we entered, she wanted to take his vitals. We’d been to these rooms before. He had wailed and screamed and broke sound barriers in these rooms. He had refused to be weighed, to don the finger oximeter for his oxygen saturation level (he has asthma), screamed while his temperature was taken and physically fought nursing personnel. In my imagination, the hospital staff has a photo of my son at their station with the word “Notorious” at the top as a warning of his presence.
I was ready to move defensively to stop him from beating the nurse. I did not need to do so. Strangely, this child, outwardly appearing to be mine, was docile and cooperative. After about two minutes of wearing the oximeter on his finger, he did pull it off but she’d already gotten a reading. She took his temperature with no incident. He even sat (with some wriggling) for his blood pressure to be taken, a first!
I gave another history to her including his autism. She advised me that the doctor would definitely want a urine sample and left me with a small plastic cup and a large plastic “pee” bottle. My heart sank. How was I ever going to get him to pee into either of these? I hated it enough when I had to do it while pregnant. And here I have a half-potty trained, half diaper-wetting, 4.5 year old ASD kid in a hospital ER and I’m supposed to get him to pee in a cup?
Well, if he could not pee in the cup, she advised me that they would go in and get the pee from him. Ouch! She also mentioned that they might want to take a look to see what was inside his bladder. I asked her if she meant through an ultrasound and she said yes. Could it get worse? Yes, much, I know. But in the moment, sick and tired myself, I did not know whether to laugh or cry from exhaustion.
I was a churning mix of emotions when the nurse left the room. I was on pins and needles waiting for the next meltdown. I was terrified of what might happen when I tried to get the urine sample. At the same time, I did not know quite what to make of the new-found cooperation. There he sat, quietly waiting for the doctor, playing with his iPad. He did keep standing up, crossing his legs, grabbing his crotch and asking to use the restroom but I was nothing short of bewildered at the calm in his behavior.
I knew our options were limited. Since he kept asking to go to the restroom, I told him to try and go in the large pee container. He got the pants down, aimed and then freaked out, pushed it away and started yelling for the restroom. Oh, yeah. Here was the kid I knew. But it subsided rather quickly and privately.
Next, we actually walked down the hall and entered a bathroom. It was within the emergency room. He sat down on the toilet and I tried to wedge the plastic container between his legs. He pushed it away. He could not pee and began again to scream and squeeze himself.
Then, the toilet automatically flushed itself. I don’t know what kind of industrial strength toilet it was but it was the loudest toilet I’d ever heard. And, of course, I expected a meltdown. Didn’t happen. Instead, my son walked over to the sink, turned on the water and started to wash his hands. He still had his pants down at his knees and nearly tripped and fell, but honestly, this was really a proud moment for me. The piercing screams I anticipated simply did not come.
Dad finally showed up as did the doctor. The doctor talked to us and then turned on an light overhead to examine my son. The light freaked him out. The doctor said he did not need it and turned it off. I held my son’s arms and my husband held his legs. My son became calm. The doctor said there was nothing unusual and suspected a bladder infection. He repeated that he must have a urine sample. I knew from our potty training experience that we simply needed to push the fluids so I asked for something to drink. The doctor told us the nurse would be back to get my son some water and juice.
Once the doctor left, my son hopped off the bed and continued his fidgety leg crossing and holding himself couple with his “need to use the restroom” mantra. I finally decided to tell him what could have been a little white lie. I told him that if he peed in the cup, we could go home.
It worked. We used the “prescription bottle” sized cup. It was not pretty. He was screaming in pain as he gave us what amounted to about a 1/4 teaspoon sample. Dad and I cheered. It turned out to be enough. The doctor told us from what he could see, it was a bladder infection. The doctor prescribed an antibiotic and we were instructed to give him plenty of fluids to flush out the infection.
What a relief. I was not made out to be a liar. My son’s condition was diagnosed. There was no catheter and no invasive procedure. We could go home.
I’m so grateful this scary visit turned out to be fixable with a simple oral medication. The little guy is doing much better. I know that many of the concerns I faced are no different than the parent of any child, special needs or not. But there are those things that would not be faced by an NT parent.
I learned about my son that day. He’s changing, in a good way. He’s brave and understands how these strangers were working to help him when he was in pain. He could not tell me with words that he was in pain, but he was telling me. I just wasn’t sure until the bath did not resolve the situation.
I saw him sit for things he would never have allowed in earlier times. He is developing. He is comprehending. He simply cannot use language or pay attention like his peers. He followed direction with the goal of going home, all while remaining as calm as was possible given his pain. This visit, with all of the emotional stress, gave me insights that provide me with new perspective for his development and continuing progress. Out of the storm emerged a young boy with some very surprisingly good behavior. He showed me a new calm that gives me hope for the future.