Well here it is Fall with Winter fast approaching and Dakota reminds me everyday several times a day -- That's Autism--His anxiety really builds during the holidays as it seems that every other week there is another holiday of some type is coming or just around the corner. I know I have preached on this at least one other time but it is a really tough time for our kids. The change in the time and the weather, the decorations, the family gatherings and dinners, shopping and music and what the hell else?????? Everywhere you go ITS DIFFERENT AND EVEN THOSE KIDS WHO UNDERSTAND AND ACCEPT THE CELEBRATION HAVE A HARD TIME WITH BEING OVERLOADED!
And to top it off is it any wonder our kids have the anxiety surge when they walk into a store before Halloween and they already have Christmas decorations?Yep that's right I blame corporate America for some of our kids anxiety--yuk yuk
Well Halloween has passed and Thanksgiving is upon us as well as Veterans Day and LORD knows what December brings-- Oh I ramble on but I will soon post Halloween pictures. Just need to down load them.
Stay tuned for more posts!
Sunday, November 6, 2011
Saturday, October 15, 2011
Back to reality
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!
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!
Thursday, September 22, 2011
Hail Hail the "Gangs all here!"
Then we were on our way to the suite to finish off the evening with the grandest cake yet!
I believe a great time was had by all!
"Star Tours Relauched" was the theme and "Darth"was the{dark}Star--ha ha
We spent several days at the hotel and Dakota had a few kids overnight on his birthday and the next day it was an all out assault of Disneyland and California Adventure.By Midnight everyone was ready to chillax for the day!
Now I am broke for the next year but filled with happy memories and the knowledge that Dakota had the best birthday ever! I always tell him that "things" can go away or destroyed but the memories you have in your mind can never be taken from you .I hope he will always remember that I did everything I could to give him the memories that will last a life time. The only thing that matters is that he is happy and content!
Tuesday, September 6, 2011
Birthday Celebration--
Soon we will be off to celebrate Dakotas birthday and I am about to go nuts!The passed 3 days have been crazy-- trying to line up logisitcs and make sure he has a great time--
I have been trying to get a few of the people who he knows to attend a dinner and a couple of them are "transportartion challenged" so YEP I am taking charge to get them there--
Its for Dakota Its the one day of the year that he actually expresses the want or need to have certain people around him. Soooooooooooooooooooo its my job to make sure that happens.
I will post more when we get back!
Its nice to post something positive for a change!
I have been trying to get a few of the people who he knows to attend a dinner and a couple of them are "transportartion challenged" so YEP I am taking charge to get them there--
Its for Dakota Its the one day of the year that he actually expresses the want or need to have certain people around him. Soooooooooooooooooooo its my job to make sure that happens.
I will post more when we get back!
Its nice to post something positive for a change!
Saturday, August 27, 2011
Facebook Page
OK so I decided to start a FaceBook page under "Daks Open Door"
I figure that it is a way to get connected with more people. I am just trying to cast a "wider net" and get more people in the conversation. I hope this will be a postive move--
I figure that it is a way to get connected with more people. I am just trying to cast a "wider net" and get more people in the conversation. I hope this will be a postive move--
Saturday, August 20, 2011
Barn Burner--
Today must have been a day that was pulled out of the Playbook from Hell. Saturdays have been difficult to say the least for several years now-- I have my theories about that; which I believe revolves around the TV schedule or lack thereof and transitional days where they are different than the weekdays. All of that being said; This day has been a Barn Burner--
An emotional Roller Coaster; a Day from Hell.
Between not having the ability to get anything done- and Dakota's unstable emotions, it just makes me wonder What am I doing here? What is my purpose and why do any of us deserve to have these challenges ?
I know that people try to be compassionate and say things like "Oh God doesn't give you more than you can handle" but honestly that's bull PUCKY.
That is why people end up in institutions. or as alcoholics or just disappear of the face of the earth SIMPLY BECAUSE THEY CANNOT HANDLE WHAT WAS GIVEN THEM.
Every day I thank God I have the strength to persevere and not give up but days like this really challenge me. I know I am not made of the same "cloth" most other are but for these days is a blessing . Hopefully I will have enough water to extinguish this Barn Burner
AND TOMORROW WILL BRING A BETTER DAY!
An emotional Roller Coaster; a Day from Hell.
Between not having the ability to get anything done- and Dakota's unstable emotions, it just makes me wonder What am I doing here? What is my purpose and why do any of us deserve to have these challenges ?
I know that people try to be compassionate and say things like "Oh God doesn't give you more than you can handle" but honestly that's bull PUCKY.
That is why people end up in institutions. or as alcoholics or just disappear of the face of the earth SIMPLY BECAUSE THEY CANNOT HANDLE WHAT WAS GIVEN THEM.
Every day I thank God I have the strength to persevere and not give up but days like this really challenge me. I know I am not made of the same "cloth" most other are but for these days is a blessing . Hopefully I will have enough water to extinguish this Barn Burner
AND TOMORROW WILL BRING A BETTER DAY!
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