Yesterday was the day that I have been dreading for quite some time now………it was the first time putting my severely autistic son under anesthesia for some dental work, a blood draw, and MRI. And it was just as bad as I imagined, but also much better than anticipated.
We didn’t necessarily need the MRI or blood, but figured lets kill as many autism challenges with one stone as we can, and as much sugar as Keegan consumes on a daily basis, we knew the dental work was necessary. We had attempted a dental check-up once and only once. It lasted about 5 seconds and sill required 4 employees to hold my son down while the dentist quickly looked in his mouth, making it obvious to everyone that nothing was going to happen in this child’s mouth while he was awake.
To make matters even more stressful, this hospital procedure had already been cancelled and rescheduled twice. The first time, the dental office changed the date of the appointment and never called to let me know. Luckily I called to ask a question, at which time they were like, “Oh, we didn’t call you? We moved it a week ahead”. As if that wasn’t enough, the dental office called me the week of the procedure and said it had to be rescheduled because they had scheduled the procedure at the wrong hospital. And since I tend to be one of those superstitious types, I was worried that all of these mishaps were a bad sign, that all this negative juju was the universe saying he shouldn’t have the procedure done. But……we did it anyway.
My biggest concern initially was how we were going to survive 2 hours in a hospital room without any food, drink, candy, or popsicles the entire time. Most parents, even other autism parents, can just throw an iPad in the kids lap, turn on some YouTube videos, and survive an hour or so. Well, not with Keegan. I would cut off my right arm if it meant that Keegan would want to play with an iPad…….that he would enjoy watching things and doing activities on an iPad (probably not my right arm, but maybe my left). This would make every adventure outside of the house a little more tolerable. But Keegan only likes to dribble balls and eat popsicles. And one of those he couldn’t do while waiting, and the other was only questionably possible in a small room.
My anxiety started building the week before the procedure. Around that time, I received a call from a woman at the hospital saying she was a “child life specialist”, and wanted to talk to me about Keegan, and ways to make the experience better for him. Initially, my skeptical autism mom hat was on, and I thought, ‘what the hell is a child life specialist, and what do you know about autism?’ We had already experienced many disappointments in the healthcare industry regarding knowledge, understanding, and acceptance of autism, so I knew this time was no different. When Keegan was 2, we had to tell our pediatrician that he was autistic, and she continued to deny it until we brought her the diagnosis from the autism center. We had also run into clueless doctors and nurses at his past ER visits, like those who didn’t even know what a “stim” was, or that most autistics have sleep disorders. I’m not saying everybody has to know everything about autism, but I believe you should have a very solid base of autism knowledge if you are going to work with them, which is why I am so adamant about teaching others the basics of autism, and why I recently obtained my Autism Specialist Certificate.
Anyway, when this Child Life Specialist called me, she impressed me. Not because she knew a lot about autism, but because she wanted to know a lot about autism. She asked many questions about Keegan’s likes and dislikes, fears, and challenges. She explained that Keegan would have a “coping plan”, which is basically the politically correct way of saying he would be treated like VIP. They were recognizing that children with special needs not only need special services, but they wanted to know each individual’s needs in detail. It was so amazing to hear how much awareness has clearly been created over the last few years, but also acceptance and the need for special accommodations. I wasn’t sure how much she was actually listening to all of my Keegan-babbling on the phone until the day of the procedure, when she came into the room to introduce herself and brought in 2 little balls for Keegan to play with. I knew right then and there that ‘times they are a-changin.’ Finally!
The waiting before the procedure ended up being the easiest part of the day. He didn’t seem to care that he couldn’t eat or drink anything, and I was grateful for that. He was content with his balls that the lady brought, while periodically watching his DVD player. The hard part was after, when they brought him back from recovery. I already warned them in the ‘coping plan’ that he would rip out the IV……for that I was certain. I had forgotten about the pulse ox that would be taped tightly around his finger, and the leads for the EKG taped all over his body.
His sad little whimper when they brought him in the room broke my tiny heart. He had covered himself with his blanket so he couldn’t see anyone or anything, and was quietly crying. It was then that I realized how sad he must have been when he woke up to all of those unfamiliar faces, all the while feeling like shit. When he began to wake up more I tried to comfort him, but since he had no idea what was going on and couldn’t verbalize his pain and discomfort, he cried harder and harder every minute. I could only imagine how hard a scenario like that is for a non-verbal autistic child, who also never pointed at pain areas or was never able to indicate where the problem was. I had to tap into my ‘autism mind-reading’ skills’, which by this point I had slowly improved over the last eight and a half years of limited communication, and I told the nurses to rip everything off his body so at least his sensory issues would decrease. At which point, he did slowly calm down and stop crying.
Keegan didn’t want to eat anything when we got home, so I was excited when he later got the ice cream out of the freezer and handed it to me. I opened it and gave him a spoon, and he went to town on that birthday cake. I was just happy he was eating something. After a few quick bites, he looked at me and started crying. It was the type of cry that I knew very well was going to turn into much more. As he cried louder and harder, he started head banging on the counter. I immediately picked him up so he wouldn’t hurt himself, and he continued to fiercely head bang my shoulder while scratching my back in anger. This was one of those times that non-verbal really sucks. I had no idea what triggered him, but I’m guessing either a brain freeze, tooth pain (since he did get 2 cavities filled while under), or it just wasn’t the ice cream he wanted. Either way, he is not able to tell me, and all I can do is hold him until he calms down.
Keegan was back to baseline this morning, so I sent him to school. About an hour after drop off, I get these pics of his chest and stomach from his teacher………………………..
For a second, I panicked. Luckily, its just an allergy or reaction from the adhesives on the leads. Looks like another allergy he inherited from mom, unfortunately.
It wasn’t until I got out of the shower today that I noticed the damage from last night. The first pic is the bruising on my left shoulder from the head banging, and the second is the nail scratches and bruising on my back.
Are these bad bruises and horrible scratches? Absolutely not! Do they hurt? A little, but the pain in his eyes while he was struggling to find the words, or how to express what was bothering him far exceeds any physical pain I could ever feel. I’m not showing you these or telling you this for sympathy or attention, it’s just part of my crusade to help educate everything about autism, even the bad sides. And maybe when you have the urge to say, “Oh, what do you mean….hospital visits are hard on all kids”, you will know why I’m rolling my eyes. Of course they are hard on all kids…………..hell, they are hard on me. I can remember how horrible I felt after every one of my surgeries. But trust me……….everything hospital related is a little different and slightly worse with autism.
Keegan had a hard time going to sleep last night. I thought it was possibly because he was worried he would wake up in a hospital again, or maybe his teeth hurt. But, he can’t tell me why, and that sucks. Tonight I am content in the fact that he is snoring away in his bed, hopefully dreaming only happy thoughts.