Well lets see--the "high" from the birthday celebration has certainly worn off--Last week was a "Comedy of Errors" and one of the most frustrating weeks of my life.
Last Monday I realized there was something wrong with Dakota's ear -- I called ALL of the familiar physicians and of course no one had any appointments-- Does it surprise you??? Kaiser need I say more. One lesson I have learned tho is how to navigate the system at Kaiser and it pains me to say this but the squeaky wheel gets the grease. Trying to be diplomatic I acquiesced and agreed to a PA {physicians assistant} because after all "lets not make a mountain out of a mole hill" -- I just need someone to look in his ear and tell whats going on---
We go to the appointment and the PA decides he has a wax blockage and it needs to be "louvaged" this is where I dropped the ball ---I should have thought out the process before they started. Needless to say the nurse did not explain fully nor did she take the proper precautions to disrobe him and put him in a proper gown{not sure if it was because she thought Dakota would be better the way he was or she just did not want to do it} BUT she pulled out a gown which did not fit him and laid it over his lap before starting. She got maybe 3 "squirts " in his ear and it was like all hell broke loose-- What I had no realized was that his t-shirt was soaked and I know he absolutely hates wet clothes---{ I am not sure where the aversion to water has come from but we have several challenges with water-- he will not drink water in most circumstances -- another post altogether>} Before you know it he was cussing and yelling I tried to calm him but the damage was done--there was no going back and at this point I knew the only option was to wrap it up and try another option .For this time it meant to get out of the Dr's. Office as soon and as efficiently as possible. I opened the door and there stood 3 nurses -- all like "deer in headlights" They had NO CLUE what to do. Then I realized that there was also a security officer who had been called--- THAT sent me over the edge-- I was really pissed off that I was in a medical facility that had been Dakotas provider since birth and they are so clueless that they had to call security--WTF? It angered me for many reasons but most of all these were medical professionals who SHOULD KNOW HOW TO HANDLE any patient-- whether its cardiac or diabetic or autistic.The PA was no where to be found and shuffled me off with a couple of scripts-- I knew the best thing was to get out as soon as possible but I was totally disappointed with the manner in which they handled the whole situation.
I understand that people need to protect themselves and there is an element of liability and we live in a litigious society BUT come on people -- This is a kid who has a disorder and needs as much compassion and tolerance as any one else. AND MEDICAL ASSISTANCE AS WELL. These kids become adults and are viewed as "a force to be reckoned with" but they have a disorder and all of us need to remember that. The other thing is even tho they can be aggressive or growl or barrel head thru a crowd for the most part they are pretty harmless-- they have a tendency to be self injurious rather that hurt others.Even when they get escalated their ability to actually hurt someone is very little -- most do not have the motor skills or muscle mass to do any damage-- In most cases even the meekest typical person can harm them more severely that they can harm the meek person-
I digress!
Back to the ear -- I thought it out and tried to figure out what to do and was convinced that I was NOT going to let this episode deter me from addressing Dakotas ear. I called after 2 days and no movement on the wax at home and insisted that if I did not get a doctor to look at it I would take him to the ER-- 5 minutes after calling an appointment materialized--I started with a social story to prepare Dakota about going back to the doctor and them I armed myself 2 extra sets of underwear t shirts and socks Plus I took not 1 but 2 rain ponchos -- I was going to keep that water from soaking his clothes
{Also another trick was I "louvaged his ear" in the shower so he was already wet and naked that worked OK -- he didn't like it but he tolerated it}
6 days passed and we got to the doctor and miracle of miracles the ear had cleared-- we didn't need to do anything more---
I was prepared to have him sedated if necessary but it turned out OK
It was truly one of the most stressful situations I have gone thru-- I think because I have gone thru a couple of other situations where I took the "wait and see" suggestion of the doctor and it turned out to be detrimental to Dakotas long term health --So again as I say at the top of this BLOG "GO with your GUT" do not back down when you think differently than the "professional " This is your child and YOU KNOW BETTER THAN ANYONE ELSE! Do Not Compromise because our kids often times cannot speak for themselves so we have to do it for them!
