Not gonna lie, I was nervous and perhaps a tad annoyed that we even had to go this route. I mean, this Kiddo of mine has been know to put anything and everything in his mouth EXCEPT a toothbrush. Flossing? And then she laughed and laughed and laughed. This was a situation that never got better. Just zippo progress. Not amount of social stories or modeling could get him through this. There's really no choice in the matter. It's what had to be done. So appointments were made and off we went to get to the hospital by 6AM. Cause telling the Kiddo that he couldn't eat or drink till his appointment was going to be rough to say the least. It was best to just be able to roll out of bed and go.
This proved to be the start of the running theme of the Kiddos limited verbal abilities and how kind of misleading they can be to the average Joe that encounters him.
"What do you mean he won't understand that he can't eat or drink before the appointment? He just sang the song "Bird is the Word" perfectly for me." Yeah, about that. There's the a difference between expressive and receptive communication. Speaking and understanding, BIG huge difference. I have talked about our personal struggles with it here. You should read it if you haven't. Don't worry. I'll wait. I'm trying to beat this level on Candy Crush Soda Saga anyway. "At least your kid talks"
You're done? Super! Okay, so where were we? Oh yes, him talking and making all the medical staff just fall in love with him. Which he did. The whole floor was staffed with middle aged/older ladies nurses. Kiddo loves him some cougars and the cougars love them some Kiddo!
"How's his pain level?" Ummmm, your guess is as good as mine. Just because I can translate some things that he says, doesn't mean I am completely fluent in "Kiddonese". I was asked this multiple times yesterday and although it was met with the token sympathetic head nod on their part, I have wonder if they actually get the amount of frustration that comes with it. Sure, it's great my Kiddo can tell you the number of every hotel room he's ever stayed in. (Regardless if you asked that or not.) Expecting him to tell you what's hurting, not gonna happen. Ever. I can't help but be concerned how this will affect him medically down the road if I am not there. Despite my "I can't ever die" plan I have going, some day I won't be around. Or what if as he grows older he pulls the "Oh Hell no. You're not coming into my medical appointments." Now that scares me.
"He seems so happy!" Yes, at this moment he is. You gave him a gown and fuzzy socks and told him he could run around without his pants. Who wouldn't be happy with that? No school today AND no pants? Well that's just my Kiddo's jam! He doesn't fully understand what's about to happen though. Despite all the prep work that went into it. The comprehension of it all isn't there. Even though you thought it was when you said "You'll just take a little nap." and he smiled and said "Hibernating! Like a bear." The rest of it? NOPE. But you laughed, so he laughed and said it again because twice is always funnier in #TeamQuirky land.
Coming out of anesthesia is rough for any kid, add autism and it's all whole new level. He cried for hours and I could just tell he was convinced this achy and loopy feeling way was permanent. There was no settling this emotional meltdown and we had to just ride it out. A large part of it was him plopping all ninety nine pounds of himself on my lap and wanting to be held like a baby, which I obliged even though it crushed my internal organs. I have two kidneys. He can squish one. No big deal.
It's always a case of being this Kiddo's translator and sometimes I wish the autism didn't play a part in some of the things we have to do. It certainly can complicate things but it also allows me to really seeing run of the mill situations in a whole new way. I do love the different perspective. I just wish it wasn't so hard or expensive sometimes.
You'll be happy to know that the Kiddo's surgery went very well and he's now gotten the clearance to eat fries again. :-)
"No pants AND they push me around in this big wheely chair? Hospitals rock! Oh wait, what's that OR room they're bringing me into???"
UGH! I get it. Been there....
ReplyDeleteBrave kid and brave mom! I'm dreading taking my little cherub to the dentist next month.
ReplyDeleteMy oldest Aspie does not interpret pain like neurotypicals. Age 12 had a 13° radius fracture set with no anesthesia (he refused "needles"), and said it felt like a massage. Age 14 hit by lightning, rhabdomyolisis with CK 54,000...moved like nothing was sore (most people would have felt like they had run a marathon then powerlifted for 5 hrs with a CK that high). He ended up hospitalized for 3 days, to give you an indication of how serious that is. Just this week, almost 18 now and tested positive for strep throat. To quote PA-C "there is NO WAY I would have thought you were positive". Um...yeah. I use every medical encounter as a teaching moment. Sensory integration deficits are REAL. I work in healthcare...please, put your pain scale where the sun doesn't shine. Do a full workup, let the lab values /Xrays speak for themselves, and remember that behavior is communication. Oh-and I get the "I can never die" thing. My biggest worry is that he will die of appendicitis because he won't feel the pain to get care.
ReplyDeleteMy oldest Aspie does not interpret pain like neurotypicals. Age 12 had a 13° radius fracture set with no anesthesia (he refused "needles"), and said it felt like a massage. Age 14 hit by lightning, rhabdomyolisis with CK 54,000...moved like nothing was sore (most people would have felt like they had run a marathon then powerlifted for 5 hrs with a CK that high). He ended up hospitalized for 3 days, to give you an indication of how serious that is. Just this week, almost 18 now and tested positive for strep throat. To quote PA-C "there is NO WAY I would have thought you were positive". Um...yeah. I use every medical encounter as a teaching moment. Sensory integration deficits are REAL. I work in healthcare...please, put your pain scale where the sun doesn't shine. Do a full workup, let the lab values /Xrays speak for themselves, and remember that behavior is communication. Oh-and I get the "I can never die" thing. My biggest worry is that he will die of appendicitis because he won't feel the pain to get care.
ReplyDeleteMine is non verbal severe and 300 lbs. Got his wisdom teeth out and was doing 360s on the cot after. They couldn't wait to get me in recovery with him. All narcotics do the opposite( no sleep). Not something I want to do again in the future. It did help the meltdowns disappear that were happening daily, surely due to pain. The new thing is not getting out of the car, if he doesn't want to go to it, it's not gonna happen.
ReplyDeleteCan't even imagine the frustration/struggle. My kid chilled a tooth last year and luckily didn't have to have work done (it was a baby tooth). He isn't autistic but he IS a wild toddler, so when I thought I might have to get him to sit still for a dental procedure, I was in full blown stress mode.
ReplyDeleteGotta say though, your "no school, no pants...that's my kiddo's jam" line made me lol!
We're going down that road in a few weeks. I sense I should start stocking up on the wine... Glad it's over for you!
ReplyDeleteWe have been lucky to find the best dentist on the planet. They let me bring in my little mister every week for at least 6 months just to get used to everything AND THEY DID NOT CHARGE US! Now my son is a dentist visit master. Even if we move away, I think we will have to come back for dental care.
ReplyDeleteWe had to do this twice with Riley. The second time was when he was going through a phase of yelling out "BASTARD" when he was mad/upset/angry sooooooo yea...that was fun.
ReplyDeleteGlad to hear he got the all clear for fries!!! :D
I have to do the sedation with my son. I am extremely nervous about it and have put it off for a year. Thank goodness he is not complaining about pain or anything. I know I need to get it done and may finally do it this summer. Glad to hear that your son is doing well.
ReplyDeletewww.nickysdaywithautism.com
I have to do the sedation with my son. I am extremely nervous about it and have put it off for a year. Thank goodness he is not complaining about pain or anything. I know I need to get it done and may finally do it this summer. Glad to hear that your son is doing well.
ReplyDeletewww.nickysdaywithautism.com
I can relate to your child breaking a tooth. Mine the same thing with their smartphone, when his brother threw it at him and hit him in the mouth. I had to have him sedated too, and it wasn't fully covered in my insurance either. I have the boys working it off in chores for the next twenty years or so.
ReplyDeleteWe are about to do sedation dentistry for our 6 year old autistic son. It is $1500 for the anesthesia (in the dentist office) and $2400 for the dental work after the $1000 the insurance will pay. It' is so hard to know if this is what we really need to do. When your child doesn't tell you their pain etc. and also if we are being taken advantage of. Would you be willing to disclose if these numbers sound comparable to what you encountered?
ReplyDeleteMegan
Also autistic, my son has low pain receptors, so when he had ground his teeth to the nerve endings it was finally determined he needed oral surgery. We took him in and they gave him "happy juice." This caused a melt-down before the surgery where he was flopping out of bed because he could not walk. It was a nightmare.
ReplyDeleteMy kids are normal and a visit to the dentist is a nightmare for me. Hats off to you for doing what needs to be done, in order to get the needs met of your child. I can only imagine what it is like to live in your world and not completely understand what it is that your child is feeling.
ReplyDeleteLucina Bland @ Western Dental - Chandler Dentist