Autism in the hospital

photo by Zwaddi via unsplash.com

original photo by Zwaddi via unsplash.com

It was a simple blood draw. Oh wait, did I say simple? Nothing in life is simple when you have a child with Autism. Everything, and I mean everything looks different for our family. I thought that if there would be a place where people understood it would be the blue smocked folks in the hospital. Nope, I was wrong.

Blood draws are done on individuals with Autism Spectrum Disorder for numerous reasons. Jeremiah needed one (several vials) to check for vitamin deficiencies and for certain genetic components. It’s suggested by some medical professionals that a child with Autism have a blood draw while under anesthesia. Jeremiah FREAKS out when a bandaid is stuck on his skin or when a bracelet is placed on his wrist, so yeah, I think anesthesia was a good idea when considering a sharp, penetrating needle.

He wasn’t able to eat or drink anything prior to the procedure so we scheduled it for early morning. I thought we were going to have a screaming boy all the way to the hospital, and in the waiting room, surprisingly we didn’t.

In an Autism Speaks article one parent relayed their life as Groundhog Day (the movie). Yes, we live it too, and occasionally Jeremiah is able to go with a diversion in the plan. So, when we woke him up, put his coat on, didn’t feed him, and drove to town in the dark without his Sissy, I couldn’t believe we didn’t have a siren in the backseat.

We checked in and the receptionist informed us that he would begin in Pre-Op, and then be moved to the OR without us. What?? I wasn’t a fan and was considered leaving when she said, “Oh no, I guess he’ll stay up here the whole time and you can be in there.” BIG flood of relief.

BLOOD PRESSURE AND BANDAIDS

He did pretty well (only a little whining in the waiting room – benefit of a very early appointment is there wasn’t too much waiting to do) UNTIL…someone he didn’t know tried to get a blood pressure reading. Remember what I said about bandaids? He doesn’t understand what they’re for and he has Sensory Processing Disorder. This means that his body is extra sensitive and he processes stimuli differently.

Now something foreign was on his body and he fought to get it off. With four of us holding him, the nurse couldn’t get a reading. We explained that he has Autism, but it wasn’t enough of an explanation, as she seemed a little irritated. She had a look on her face that said BRAT.

NURSE SANDRA TRIES TO HELP

She left the room and a nurse (let’s name her Sandra) asked if Jeremiah would like a toy. Justin said no. (Justin wasn’t being unkind to Jeremiah, he just knows his son well. He knew that Jeremiah would have no interest in a toy, first, because we were beyond the toy phase. Second, he doesn’t like many toys period. He loves his doodle pad, swing, and an occasional sensory toy. Third, put something in front of him that he doesn’t want and he’ll be upset. He can’t tell us with words that he’s angry and doesn’t want a toy, so what are his options?)

Nurse Sandra asked if Jeremiah has a favorite color. I knew she was trying to help, and to keep from looking like neglectful parents, I went with her to pick out a toy.

Back in the room (Jeremiah ignored the squishy toy I found), Sandra asked if he would let her put the name band on his ankle. You know those beautiful bracelets everyone who is a patient at a hospital receives, just in case they forget who they are? Yeah, no. Did she forget what it was like getting his blood pressure? Not happening.

Next was the cute smock covered in Tiggers. Yes, bouncy, can-do Tiggers. However, this boy was not thinking bouncy, positive, happy thoughts. He had no idea where he was, what was being done to him, or why. Thankfully Nurse Sandra was understanding and let him do the procedure in his pull-up.

Nurse Sandra now needed a heart rate, after three of us tried to hold his little finger still, she did get a quick two-second reading, but it was anything but a normal, resting heart rate. Jeremiah was MAD, and I don’t blame him.

WE ALL KNOW, NOTHING NEEDS TO BE SAID

Justin held Jeremiah and he clung to him, I reached out and Jeremiah turned away. This isn’t a rare occurrence, Jeremiah is more attached to Justin than to me, it’s always been this way. (Something to do with Autism and their attachments to people or things.) I wanted my son to cling to me, I wanted to be the one to console him in the hospital where he was so confused and scared.

As Nurse Sandra watched this, she said, “He sure likes his dad.” Yep! Not sure why people need to label this fact. It couldn’t make me feel any schmuckier. It’s obvious that he loves his Dad. Does this mean he doesn’t love me? Well, he doesn’t talk, so he’s never said, “I love you,” but in my heart I have to believe he does or that heart would break in two.

DR. ANESTHESIOLOGIST

Then the Anesthesiologist entered the room, talk about stoic! We went through the list of 101 Questions again, repeating that, no he hadn’t had anything to eat or drink. Then he said, “I can do a blood draw without anesthesia.” See, he had missed the part where four of us couldn’t hold Jeremiah still enough to get his blood pressure or heart rate. I’m thinking, “Nurse Sandra, would you like to share what’s been going on in here?” I’m surprised the entire floor didn’t hear the screaming.

What I actually said was, “Jeremiah has Autism, and it’s recommended by his doctor that a blood draw be done under anesthesia.” He nodded.

HEY KID, WATCH THIS VIDEO GAME AND ALL YOUR TROUBLES WILL DISAPPEAR

He asked if Jeremiah likes any video games or APPS. We said no, but he handed me his phone, and while Justin held Jeremiah, Dr. Anesthesiologist held Jeremiah’s head from behind with the mask over his nose and mouth, I was supposed to play Angry Birds while the little guy watched. Jeremiah was an Angry Bird! Thankfully it didn’t take him too long to dive deep into sleepy depths. He didn’t fight it, or cry, either because those two were holding him so tight he couldn’t budge or because he was terrified. I go with number two.

I was thanking God that we’d decided to put him under for the blood draw because it took Nurse Sandra several attempts to find a vein to draw from. Several sticks, several vials. Oh, it would’ve been torturous if he was awake.

ONE HAPPY MAMA

He woke up and I was one happy Mama! Nurse Sandra tried to get another heart reading, with three of them trying to no avail. Dr. Anesthesiologist waved his phone with the Angry Birds in front of Jeremiah’s face while Jeremiah screamed. I can only imagine what he would’ve said if he could talk!

SHARE AUTISM WITH THE WORLD

I left the hospital realizing that many medical professionals don’t know about nonverbal Autism. What can we do? Bring awareness to the world. Talk to others about what it’s like. On LinkedIN, Sharon Fialco talked about the difference between bringing awareness of Autism to the world verses acceptance. She’s right, we don’t only need the world to be aware of Autism, but it needs to accept Autism. However, I think awareness would come first. So, share your stories, the good and the bad. Our different is awesome and unique, but if we stay quiet, or pretend that nothing’s different about our children, how will others know how to respond?

*There are many wonderful nurses and doctors who have an understanding of Autism, it just didn’t happen to be our day to run into them. I give Nurse Sandra and Dr. Anesthesiologist kudos for making efforts to help Jeremiah.

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