Well I guess its postponing the envitable. Since as early as December 2009 Dakota has been having episodes of aggression that I had never seem prior. Over the course of his life he has had tantruming and behaviors that others were unable to understand or perhaps even intimidated by but always manageable. By that I mean usually you could identity an antecedent and/or trigger and potentially eliminate a reoccurence.
The issues Dakota has had since December have been different because many of the times I cannot figure out what is triggering it. Also these "episodes" have been much more intense and he has expressed much more rage. Yelling, Physically assaulting himself and me and more sorrow and emotion. I have no fear of him because it is done with NO INTENT too harm anyone it is simply the static in his brain going off and his inability to stop his actions.
Although these behaviors continue, there has been an improvement. The occurrence rate was about 5 to 7 a week at the onset and now it is perhaps 1 or 2 a week. Don't misunderstand there is "all kinds of Autism" besides the behaviors goin on but for the most part this "Ragey Stuff" has curtailed.
We recently took a 2000 mile trip over 9 days and there was only 2 real episodes --SO THAT'S A BIG IMPROVEMENT. And I can honestly say that I deciphered both incidents -- I know what caused them and I know how to avoid those situations in the future.
My most recent hurdle has been with the program I have had him in --Anthesis. At the onset almost a year ago he had a couple of reactions that were inappropriate and were dealt with very effectively . Just the past few months have seemed to "crop up" feelings that Dakota is acting on. It is manifesting itself with actions toward the wonderful woman who has been working with him. The initial trigger was the time of an appointment for a session that had been changed from the original session from that he even reacted when she tried to observe him on a preferred activity with friends. ITS DEFINITELY NOT HER it that she represents the program --I believe he is trying to tell me that he does not want to go anymore and it is breaking my heart.
To have the baby you gave birth too struggle with so many issues that you have no control over is heart wrenching. More so not having a solution or "fix" is even worse. BUT you keep plugging on and you keep trying and NEVER GIVE UP. Remain diligent in observation and thought. It is truly a puzzle and you have to keep tryin to put the pieces together. You may not ever get the whole puzzle together but if you get the "frame" at least it gives you a space to work with in.
Wednesday, August 18, 2010
Sunday, August 1, 2010
IRC {Inland Regional Center} and Perussis {Whooping Cough Vaccine}
OK call this a rant! IRC {Inand Regional Center} provides postings by parents about issues that may or may not be of interest to other parents and caregivers.
About 2 weeks ago someone posted a notice about the facxt of Whooping cough and the Importance of getting your child vaccinated with PERTUSSIS. This person happened to be an ADMINISTRATOR AFFILLIATED WITH KAISER who was also a parent I am ASSUMING-since it was posted as a notice from a parent. Essentially it spelled out all the reasons for vaccinating your child with PERTUSSIS AND SO FAR AS TO ENCOURAGE IT!
I wrote back with a response that Dakota had a DPT{Diptheria, Pertussis, Tetanus} booster and ended up in the Emergency room with a seizure.I went on to describe the fact that specifically to Kaieser but with most pediatric facilities there are postings notifying you of the POTENTIAL danger of Pertussis and that seizures are a known side effect of PERTUSSIS.
BASICALLY WHAT HAPPENED IS DAYS WENT BY AND MY RESPONSE WAS NOT POSTED SO I CHALLENGED Diane Kimble who is the one who does the posting for IRC. In so many words and after about 3 emails I was told that they would not post my response---
I am outraged and pissed off that they can post one side of th story but not the other so I have decided to post the emails and correspondence below
The first and so on-------
In a message dated 7/13/2010 2:51:34 P.M. Pacific Daylight Time, dkimble@inlandrc.org writes:
California is experiencing an epidemic of whooping cough (pertussis). While it is contagious, it is also preventable. Vaccination is the best form of protection. Taking common-sense steps to protect yourself and your family, such as covering your mouth when you cough and washing your hands often, are helpful in preventing the spread of whooping cough.
What is whooping cough?
Whooping cough, also known as pertussis, is a contagious disease that can be spread easily from person-to-person through coughing. It’s life-threatening for babies 6 months and younger as whooping cough can cause them to stop breathing or to cough so much they can’t breathe.
How widespread is the disease?
The California Department of Health Services has said the state is on pace to experience the most illnesses and deaths due to whooping cough in 50 years. As of June 15, the state has identified 910 cases, is investigating an additional 600 cases, and recorded five infant deaths.
What are the symptoms?
Whooping cough starts like a common cold, with a runny nose, congestion, sneezing, and sometimes a mild cough or fever. After one to two weeks, severe coughing often begins. Children with the disease cough violently and rapidly, repeatedly, until they are forced to inhale with a loud whooping sound.
What should I do if I suspect I or a family member has whooping cough?
Contact your healthcare provider immediately, especially if you care for or have contact with newborn children that are less than 6 months of age.
How can it be prevented?
Whooping cough can be prevented by pertussis vaccinations (DTaP) at regularly scheduled wellness visits for children 2 months through 6 years of age. A Tdap booster shot is needed for persons ages 11 years and older for protection against tetanus and diphtheria, as well as pertussis.
What can you do to protect yourself and your family?
Get vaccinated if you meet the criteria.
Cover your mouth when coughing and wash or degerm your hands often.
Who should get vaccinated?
Mothers, fathers, caregivers, and those living with newborns and infants 6 months and younger
Children ages 11 and older who have not had their regularly scheduled Tdap booster
Pregnant patients in their second or third trimester
Women who plan on becoming pregnant
LIVE WELL AND THRIVE !!
Fenella V. Nadeau
Senior Account Manager -- Inland Empire Service Area
17284 Slover Avenue, Fontana, CA 92337
909-609-2843 (office) Tie line 8-286
[IF YOU WOULD LIKE A COPY OF A FLYER (ENGLISH & SPANISH) WITH THIS INFORMATION, CONTACT ME AND I WILL SEND TO YOU DIRECTLY.]
This notice is informational only. Regional Center does not vouch for effectiveness nor support the funding of these services.
To unsubscribe/change profile:
http://www.mailermailer.com/x?u=42431605f-b856436
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san bernardino, California 92412-6127
This message was sent to you because you signed up via our
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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My first challenge-------
So Diane Kimble--- do you only post what you think is relevant?
I think that as a parent who has had a personal experience with PERTUSSIS that my information is just as relevant as a post from someone who works for a an HMO.
and in fact I subscribe to Kaiser and have personal knowledge about their procedures and positions---
I feel it is IRC responsibility to post ALL parents observations whether they agree or not!
Please let me know your position on this ?
PLEASE BE AWARE--Pertussis is a medication that CAN cause seizures! Even in the Kaiser Pediatric examination rooms there is a bulletin that explains that Pertussis does and can cause seizures. The occurrence rate is low and you can also die from Whooping cough BUT parents pick your poison---My son ended up in the E R with seizures after receiving his scheduled DPT booster {Diptheria ,Pertussis ,Tentanus} The only reason he survived was that he was already on anti-siezure medication. If your child has a reaction to pertussis it is mostly likely or potentially deadly!
Cindy from DAKS OPEN DOOR-JOURNAL
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
response----------------
In a message dated 7/19/2010 8:04:38 A.M. Pacific Daylight Time, DKimble@inlandrc.org writes:
Typically, I do not post anything medical because each individual’s reaction is so very unique, however, my supervisor had me post the pertussis update.
I would never believe any child’s reaction is irrelevant, however, it is a fact that every time a vaccination is given the medical professionals bombard families with the possible side effects, as you had acknowledged in your e-mail (the bulletin at Kaiser). I also have a child and worry every time she needs to be vaccinated, but I have always been informed of the possible side effects.
I am very sorry that your son had such a terrible reaction, and glad he came through, but it appeared that Kaiser had put up the required bulletins to forewarn families.
I will forward your concern to my supervisor and let her make the final decision.
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I wrote back----------------------
Hello Diane-- Thank you for your response-- I just want to clarify that I am not questioning the Medical Professionals : Kaiser or otherwise, to encourage parents to vaccinate, as for most kids the exposure and results of most communicable diseases is potentially more harmful than most Immunizations. I get that and Never want anyone to misunderstand my intent. I dont want anyone to think I am out to blame vaccinations for anything nor do I question the notifications that were posted on the door at Kaiser. The only point I was trying to drive home was to give parents and care givers the "heads up" about the possible side effects that they MAY NOT BE AWARE OF -- for many reasons including the fact that they are NEW to this whole world of "special care" for their child or children or even the fact that the warnings that are posted are sometimes inconspicuous or not very well presented in the examination rooms { i.e. @ Kaiser they are in a clear slip cover and literally hanging on a hook on the back of the door-- NOT PROMINENTLY DISPLAYED and often times the doctors do not take the time to explain these things }
I dont want to come off like some crazy person trying to rid the world of vaccinations or talk someone in or out of vaccinating their child --- My intention was to bring attention to an issue that sometimes is overlooked or parents are not aware of until it is too late. After all we need to be informed in order to make what ever decision is necessary for our family!
and if you or your supervisor choose to post our families experience I urge to put any or all of this post with it or to put your own disclaimer on it--
I just know if I was a NEW parent I would be glad to receive this or any input from other parents .Especially tose of us who are bonded by IRC
Cindy from DAKS OPEN DOOR-JOURNAL
My public journal about "Living with Autism"
Stories, Thoughts and Observations about our journey!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Dianes respose-----
My supervisor is not a medical person and would like Dr. Eliana Lois to make any final decisions about sharing medical experiences. She is the Chief of Medical Services. Sounds crazy, I know, but when it’s medical information, we must defer to our medical Chief! I have sent our conversation over for her perusal, and asking her if we may share.
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The final word from IRC----
I wanted to let you know that Dr. Lois got back to me, actually quite quickly. I was surprised. She has asked that individual medical experiences not be shared via the agency list serv. She believes broad overviews on medical topics are best on a list serv such as ours (social work). Sorry…….Diane
All I can say is that I intend to let as many people as I can know that IRC is not acting responsibily when they ONLY WANT TO ALLOW ONE OPINION OR SIDE BE PUBLISHED!
Its not that I have earth shattering information BUT if one child or individual can be spared a seizure or any other side effect because of my posting or anyother parents posting then IRC is failing us and NOT DOING THEIR JOB PROPERLY
Finally I must say that I am not one of the many parents who have seen their children develop normally and suddenly witness severe developmental delay from vaccines -- BUT I believe that those children were affected---this post is strictly designed to bring attention to the fact that Pertussis is known BY THE MEDICAL COMMUNITY to cause seizures but many of us do not know that> THATS ALL!
JUST MAKE YOUR DECISIONS ON ALL THE INFORMATION YOU CAN GET not BY THE FILTRATION SYSTEM OF IRC!
About 2 weeks ago someone posted a notice about the facxt of Whooping cough and the Importance of getting your child vaccinated with PERTUSSIS. This person happened to be an ADMINISTRATOR AFFILLIATED WITH KAISER who was also a parent I am ASSUMING-since it was posted as a notice from a parent. Essentially it spelled out all the reasons for vaccinating your child with PERTUSSIS AND SO FAR AS TO ENCOURAGE IT!
I wrote back with a response that Dakota had a DPT{Diptheria, Pertussis, Tetanus} booster and ended up in the Emergency room with a seizure.I went on to describe the fact that specifically to Kaieser but with most pediatric facilities there are postings notifying you of the POTENTIAL danger of Pertussis and that seizures are a known side effect of PERTUSSIS.
BASICALLY WHAT HAPPENED IS DAYS WENT BY AND MY RESPONSE WAS NOT POSTED SO I CHALLENGED Diane Kimble who is the one who does the posting for IRC. In so many words and after about 3 emails I was told that they would not post my response---
I am outraged and pissed off that they can post one side of th story but not the other so I have decided to post the emails and correspondence below
The first and so on-------
In a message dated 7/13/2010 2:51:34 P.M. Pacific Daylight Time, dkimble@inlandrc.org writes:
California is experiencing an epidemic of whooping cough (pertussis). While it is contagious, it is also preventable. Vaccination is the best form of protection. Taking common-sense steps to protect yourself and your family, such as covering your mouth when you cough and washing your hands often, are helpful in preventing the spread of whooping cough.
What is whooping cough?
Whooping cough, also known as pertussis, is a contagious disease that can be spread easily from person-to-person through coughing. It’s life-threatening for babies 6 months and younger as whooping cough can cause them to stop breathing or to cough so much they can’t breathe.
How widespread is the disease?
The California Department of Health Services has said the state is on pace to experience the most illnesses and deaths due to whooping cough in 50 years. As of June 15, the state has identified 910 cases, is investigating an additional 600 cases, and recorded five infant deaths.
What are the symptoms?
Whooping cough starts like a common cold, with a runny nose, congestion, sneezing, and sometimes a mild cough or fever. After one to two weeks, severe coughing often begins. Children with the disease cough violently and rapidly, repeatedly, until they are forced to inhale with a loud whooping sound.
What should I do if I suspect I or a family member has whooping cough?
Contact your healthcare provider immediately, especially if you care for or have contact with newborn children that are less than 6 months of age.
How can it be prevented?
Whooping cough can be prevented by pertussis vaccinations (DTaP) at regularly scheduled wellness visits for children 2 months through 6 years of age. A Tdap booster shot is needed for persons ages 11 years and older for protection against tetanus and diphtheria, as well as pertussis.
What can you do to protect yourself and your family?
Get vaccinated if you meet the criteria.
Cover your mouth when coughing and wash or degerm your hands often.
Who should get vaccinated?
Mothers, fathers, caregivers, and those living with newborns and infants 6 months and younger
Children ages 11 and older who have not had their regularly scheduled Tdap booster
Pregnant patients in their second or third trimester
Women who plan on becoming pregnant
LIVE WELL AND THRIVE !!
Fenella V. Nadeau
Senior Account Manager -- Inland Empire Service Area
17284 Slover Avenue, Fontana, CA 92337
909-609-2843 (office) Tie line 8-286
[IF YOU WOULD LIKE A COPY OF A FLYER (ENGLISH & SPANISH) WITH THIS INFORMATION, CONTACT ME AND I WILL SEND TO YOU DIRECTLY.]
This notice is informational only. Regional Center does not vouch for effectiveness nor support the funding of these services.
To unsubscribe/change profile:
http://www.mailermailer.com/x?u=42431605f-b856436
To subscribe:
http://www.mailermailer.com/x?oid=03071
Our address:
P.O. Box 6127
san bernardino, California 92412-6127
This message was sent to you because you signed up via our
website on 2005-06-28 02:16:38
Email list management powered by http://MailerMailer.com
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My first challenge-------
So Diane Kimble--- do you only post what you think is relevant?
I think that as a parent who has had a personal experience with PERTUSSIS that my information is just as relevant as a post from someone who works for a an HMO.
and in fact I subscribe to Kaiser and have personal knowledge about their procedures and positions---
I feel it is IRC responsibility to post ALL parents observations whether they agree or not!
Please let me know your position on this ?
PLEASE BE AWARE--Pertussis is a medication that CAN cause seizures! Even in the Kaiser Pediatric examination rooms there is a bulletin that explains that Pertussis does and can cause seizures. The occurrence rate is low and you can also die from Whooping cough BUT parents pick your poison---My son ended up in the E R with seizures after receiving his scheduled DPT booster {Diptheria ,Pertussis ,Tentanus} The only reason he survived was that he was already on anti-siezure medication. If your child has a reaction to pertussis it is mostly likely or potentially deadly!
Cindy from DAKS OPEN DOOR-JOURNAL
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
response----------------
In a message dated 7/19/2010 8:04:38 A.M. Pacific Daylight Time, DKimble@inlandrc.org writes:
Typically, I do not post anything medical because each individual’s reaction is so very unique, however, my supervisor had me post the pertussis update.
I would never believe any child’s reaction is irrelevant, however, it is a fact that every time a vaccination is given the medical professionals bombard families with the possible side effects, as you had acknowledged in your e-mail (the bulletin at Kaiser). I also have a child and worry every time she needs to be vaccinated, but I have always been informed of the possible side effects.
I am very sorry that your son had such a terrible reaction, and glad he came through, but it appeared that Kaiser had put up the required bulletins to forewarn families.
I will forward your concern to my supervisor and let her make the final decision.
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I wrote back----------------------
Hello Diane-- Thank you for your response-- I just want to clarify that I am not questioning the Medical Professionals : Kaiser or otherwise, to encourage parents to vaccinate, as for most kids the exposure and results of most communicable diseases is potentially more harmful than most Immunizations. I get that and Never want anyone to misunderstand my intent. I dont want anyone to think I am out to blame vaccinations for anything nor do I question the notifications that were posted on the door at Kaiser. The only point I was trying to drive home was to give parents and care givers the "heads up" about the possible side effects that they MAY NOT BE AWARE OF -- for many reasons including the fact that they are NEW to this whole world of "special care" for their child or children or even the fact that the warnings that are posted are sometimes inconspicuous or not very well presented in the examination rooms { i.e. @ Kaiser they are in a clear slip cover and literally hanging on a hook on the back of the door-- NOT PROMINENTLY DISPLAYED and often times the doctors do not take the time to explain these things }
I dont want to come off like some crazy person trying to rid the world of vaccinations or talk someone in or out of vaccinating their child --- My intention was to bring attention to an issue that sometimes is overlooked or parents are not aware of until it is too late. After all we need to be informed in order to make what ever decision is necessary for our family!
and if you or your supervisor choose to post our families experience I urge to put any or all of this post with it or to put your own disclaimer on it--
I just know if I was a NEW parent I would be glad to receive this or any input from other parents .Especially tose of us who are bonded by IRC
Cindy from DAKS OPEN DOOR-JOURNAL
My public journal about "Living with Autism"
Stories, Thoughts and Observations about our journey!
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Dianes respose-----
My supervisor is not a medical person and would like Dr. Eliana Lois to make any final decisions about sharing medical experiences. She is the Chief of Medical Services. Sounds crazy, I know, but when it’s medical information, we must defer to our medical Chief! I have sent our conversation over for her perusal, and asking her if we may share.
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The final word from IRC----
I wanted to let you know that Dr. Lois got back to me, actually quite quickly. I was surprised. She has asked that individual medical experiences not be shared via the agency list serv. She believes broad overviews on medical topics are best on a list serv such as ours (social work). Sorry…….Diane
All I can say is that I intend to let as many people as I can know that IRC is not acting responsibily when they ONLY WANT TO ALLOW ONE OPINION OR SIDE BE PUBLISHED!
Its not that I have earth shattering information BUT if one child or individual can be spared a seizure or any other side effect because of my posting or anyother parents posting then IRC is failing us and NOT DOING THEIR JOB PROPERLY
Finally I must say that I am not one of the many parents who have seen their children develop normally and suddenly witness severe developmental delay from vaccines -- BUT I believe that those children were affected---this post is strictly designed to bring attention to the fact that Pertussis is known BY THE MEDICAL COMMUNITY to cause seizures but many of us do not know that> THATS ALL!
JUST MAKE YOUR DECISIONS ON ALL THE INFORMATION YOU CAN GET not BY THE FILTRATION SYSTEM OF IRC!
Saturday, July 17, 2010
Can You Imagine?
How many times in your life have you had a cut,scratch,or scrape? A sore throat,ear ache or tooth ache? A hang nail, stubbed toe or pulled muscle? An eye twitch,some type of bruise or a migraine???
Can you imagine waking up every morning with a massive headache and not only be unable to tell someone about it but never have a remedy. Meaning EVERY DAY FOR THE REST OF YOUR LIFE you would have to live with this condition. Thats the way I imagine in my head that Autism feels like-- the static that goes off in the brain has got to be so overwhelming how could any individual get any peace for their entire life?
Add to that the inability to express pain from every day life and how many of you would be able to tolerate it? I think I would land in the "Loony bin":or worse--I wont say---
Each and everyone of us as human beings have the maladies I mapped out in the beginning of this piece and we run to the medicine cabinet or the doctor to get help and hopefully relief.
BUT my kid has NEVER once expressed pain or discomfort 23 years. I cannot imagine what goes thru his head-- Does he expect me to sense that he is experiencing these pains? All I can conjure in my head is that he just assumes that I know he is not feeling well and I will fix it--- THIS KILLS ME!I cant tell you how many times I have said to him "You dont have a "moving message" board on your forehead to tell me what you are thinking" and if he needs some kind of assistance he has to use his words!
I know that is easy for a typical person to say because of course it is easy for us to do== BUT again how incredibly hard must this be for our kids??? I just CANNOT Imagine!
Can you imagine waking up every morning with a massive headache and not only be unable to tell someone about it but never have a remedy. Meaning EVERY DAY FOR THE REST OF YOUR LIFE you would have to live with this condition. Thats the way I imagine in my head that Autism feels like-- the static that goes off in the brain has got to be so overwhelming how could any individual get any peace for their entire life?
Add to that the inability to express pain from every day life and how many of you would be able to tolerate it? I think I would land in the "Loony bin":or worse--I wont say---
Each and everyone of us as human beings have the maladies I mapped out in the beginning of this piece and we run to the medicine cabinet or the doctor to get help and hopefully relief.
BUT my kid has NEVER once expressed pain or discomfort 23 years. I cannot imagine what goes thru his head-- Does he expect me to sense that he is experiencing these pains? All I can conjure in my head is that he just assumes that I know he is not feeling well and I will fix it--- THIS KILLS ME!I cant tell you how many times I have said to him "You dont have a "moving message" board on your forehead to tell me what you are thinking" and if he needs some kind of assistance he has to use his words!
I know that is easy for a typical person to say because of course it is easy for us to do== BUT again how incredibly hard must this be for our kids??? I just CANNOT Imagine!
Monday, July 12, 2010
The Loss
The Loss of our friend and Dakotas coach /mentor has impacted us in so many ways. I have found myself struggling to write as many things have happened yet I am having a hard time sorting thru what is directly connected to Brad passing and just a round of different behaviors--
My biggest obstacle was telling Dakota about Brad==WOW that was a hard one and it took e almost 2 weeks. I managed to shield him for a while but came to the conclusion that this is a fact of life that just has to be experienced--I contemplated telling Dak that Brad had just gotten a job in a far way town but after a day or so I realized that this would have been even more difficult as Dakota has legitimate abandonment issues and if Dakota thought that Brad just up and moved on him that would be worse. So when the time was right -- not to late in the day so Dakota would not dwell on it at night and after he had eaten at least one meal for the day I sat down and did the best I could. It tore me up. I realize now that even tho I liked Brad and had genuine feelings of friendship with him it was more about how it would effect Dakota-- immediately as well as long term. This was going to turn Dakotas world upside down.
Oh we will survive and I will press onward for Dakotas independence but it was just about the trust and ease with Brad. I knew Dakota was safe and protected when he was with Brad. We have started a few things to try to re-establish some activities but it will be a rebuilding period. Honestly NO ONE will ever replace Brad. I have started to plan and plot out alternatives and pray that we wont have to go thru this again. I think the lesson is "No matter how well you think you have things figured out there will always be unforeseen obstacles"
further more BackUP BackUp BackUP !!!!!!!! you can never have enough Back Up.
My biggest obstacle was telling Dakota about Brad==WOW that was a hard one and it took e almost 2 weeks. I managed to shield him for a while but came to the conclusion that this is a fact of life that just has to be experienced--I contemplated telling Dak that Brad had just gotten a job in a far way town but after a day or so I realized that this would have been even more difficult as Dakota has legitimate abandonment issues and if Dakota thought that Brad just up and moved on him that would be worse. So when the time was right -- not to late in the day so Dakota would not dwell on it at night and after he had eaten at least one meal for the day I sat down and did the best I could. It tore me up. I realize now that even tho I liked Brad and had genuine feelings of friendship with him it was more about how it would effect Dakota-- immediately as well as long term. This was going to turn Dakotas world upside down.
Oh we will survive and I will press onward for Dakotas independence but it was just about the trust and ease with Brad. I knew Dakota was safe and protected when he was with Brad. We have started a few things to try to re-establish some activities but it will be a rebuilding period. Honestly NO ONE will ever replace Brad. I have started to plan and plot out alternatives and pray that we wont have to go thru this again. I think the lesson is "No matter how well you think you have things figured out there will always be unforeseen obstacles"
further more BackUP BackUp BackUP !!!!!!!! you can never have enough Back Up.
Monday, June 21, 2010
In Rememberance of Brad Loula
Brad Loula's Memorial Website
http://memorialwebsites.legacy.com/CoachLoulamemorial/homepage.aspx
The Autsim Community suffered a huge loss this week==
My sons best friend and mentor died at the young age of 46. This was a man who was a rough, gruff, curmudgeon of a man, a football coach and someone who possessed the heart and soul of an angel. By many accounts Brad was not perfect and in fact quite difficult to get along with in the typical world. I saw him on many occassions with very little patience for situations when typical kids or adults acted out or were out of hand. When it came to understanding and caring for Dakota it was as if he could flip a switch to become the best support a kid could ever want and a parent would ever wish for.
I knew when Dakota went with Brad that I had no worries . He would be protected and given his independence -- that was a fine line!
Brad and Dakota were "2 Peas in a Pod" and in someways I believe Dakota did as much for Brad as the other way around.
My heart aches tonight, my son does not even know yet and I dont know how I will find the words. I know I must tell him because he needs to understand that Brad did not abandon him but that God had a different plan.
There arent many out there who had or have this ability Brad possessed. Dakotas world is turned upside down and we are back to square one. I hate "hokey sayings" but in this case I must hope that "when a door shuts, a window will open!"
We will miss you Brad and although you didnt think there was an afterlife I hope that you are finding out right now that I WAS right!
http://memorialwebsites.legacy.com/CoachLoulamemorial/homepage.aspx
The Autsim Community suffered a huge loss this week==
My sons best friend and mentor died at the young age of 46. This was a man who was a rough, gruff, curmudgeon of a man, a football coach and someone who possessed the heart and soul of an angel. By many accounts Brad was not perfect and in fact quite difficult to get along with in the typical world. I saw him on many occassions with very little patience for situations when typical kids or adults acted out or were out of hand. When it came to understanding and caring for Dakota it was as if he could flip a switch to become the best support a kid could ever want and a parent would ever wish for.
I knew when Dakota went with Brad that I had no worries . He would be protected and given his independence -- that was a fine line!
Brad and Dakota were "2 Peas in a Pod" and in someways I believe Dakota did as much for Brad as the other way around.
My heart aches tonight, my son does not even know yet and I dont know how I will find the words. I know I must tell him because he needs to understand that Brad did not abandon him but that God had a different plan.
There arent many out there who had or have this ability Brad possessed. Dakotas world is turned upside down and we are back to square one. I hate "hokey sayings" but in this case I must hope that "when a door shuts, a window will open!"
FIRST MONTH TOGETHER
2001
BRADS BIRTHDAY 2008
SEE YOU ON THE OTHER SIDE !!!!!!!!!!!!!!!!!!
Thursday, June 3, 2010
Operational Mannual
Many years ago I attended a program for Dakota where the parental advisor gave us an assignment-----
"I want you to create an "operational mannual" for your son or daughter." "Lets just say that we do not know the future and any one of us could go out and get killed, drop dead or end up in a hospital tommorrow." " Arent your children fragile enough without routine or schedule being disrrupted? If a parent was not there; could it cause your child to end up in a tail spin?"
Why allow their world to fall apart any worse than it would if your were not there? The assignement was to assemble information about your child so that a perfect stranger could pick up the pieces and TRY to make your child world OK without you.
My mannual developed a life of its own and is probably much more than necessary but heres what I tried to do: Paint a picture of my son and his daily weekly and monthly routine.I included Family contacts. support people {ones that were in his life} diagnosis, prescrpitions,medical history and background,Daily routines-- bathing,toileting, eating, bedtime---Eductional back ground including schools and teachers that did well with him and activities he excelled in,certain ways he was at home, what TV shows he likes and activities he did and any special little thing that set him apart from typical. Like the fact that he does not understand how to blow his nose or that he does not swallow pills. Additionally I included 3 or 4 articles about Autism and included network info about different no profits that could offer info,support or help.I also added info about places he liked to go to and how he did in each environment. I put hints in there about things that seem to trigger Dakota and non preferred tasks .
I guess my point is that every kids world would be turned upside down if their parent wasnt there tommorrow-- but dont we owe it to these kids to have the best support they can get. All this is in your head and unless its is written down NO ONE KNOWS IT! and your child probably cannot express it--
So think about it. Make an "Operational Mannual" and hope you never have to use it---You can even use a your computer and burn it on to a CD-- I utilized a notebook and included pictures and magazine articles plus reference material like pamphelets so that somone has an idea of where to start.
"I want you to create an "operational mannual" for your son or daughter." "Lets just say that we do not know the future and any one of us could go out and get killed, drop dead or end up in a hospital tommorrow." " Arent your children fragile enough without routine or schedule being disrrupted? If a parent was not there; could it cause your child to end up in a tail spin?"
Why allow their world to fall apart any worse than it would if your were not there? The assignement was to assemble information about your child so that a perfect stranger could pick up the pieces and TRY to make your child world OK without you.
My mannual developed a life of its own and is probably much more than necessary but heres what I tried to do: Paint a picture of my son and his daily weekly and monthly routine.I included Family contacts. support people {ones that were in his life} diagnosis, prescrpitions,medical history and background,Daily routines-- bathing,toileting, eating, bedtime---Eductional back ground including schools and teachers that did well with him and activities he excelled in,certain ways he was at home, what TV shows he likes and activities he did and any special little thing that set him apart from typical. Like the fact that he does not understand how to blow his nose or that he does not swallow pills. Additionally I included 3 or 4 articles about Autism and included network info about different no profits that could offer info,support or help.I also added info about places he liked to go to and how he did in each environment. I put hints in there about things that seem to trigger Dakota and non preferred tasks .
I guess my point is that every kids world would be turned upside down if their parent wasnt there tommorrow-- but dont we owe it to these kids to have the best support they can get. All this is in your head and unless its is written down NO ONE KNOWS IT! and your child probably cannot express it--
So think about it. Make an "Operational Mannual" and hope you never have to use it---You can even use a your computer and burn it on to a CD-- I utilized a notebook and included pictures and magazine articles plus reference material like pamphelets so that somone has an idea of where to start.
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