Good bye April.....Good riddence....
I am not quite sure how this came about, I definitely know why...
April has always been a HELL MONTH for me.Its completely unrelated to autism yet conncected in some ways....
Perhaps I have arrived at "wishing"it on myself. Just from the knowledge of the month coming in the natural rotatation.Yet as far back as I can remember April has always brought challenges, bad luck and crap. Agruments with close personal liaisons,cars breaking down,bank accounts over drawn, physical injury, weird situations that have no specific reason to happen.
This year, this month has been no different. Without enumerating all the crap that the last 30 days have brought I am jumping with glee that within the hour April will be gone at least for the next 11 months or 336 days (gotta add an extra day..leap year)
So Farwell, So long , averdersein(sp) , adieu.....can't wait for midnight....for the month to be GONE!!!!
Thursday, April 30, 2015
Monday, April 27, 2015
10 years ago Today
As if Dakotas birth wasn't enough for a life time....10 years ago today we suffered another set back...
The short story is that Dakotas Teacher went against the IEP and made him and his 1 on 1 aide go to the baseball field for lunch rather than the quad as described in his goals . This way the teacher could give the other aides in the class their breaks while still covering his own ass by using Daks aide to watch the other kids...
Dakota decided he did not want to be there and started back to the class ..stepped down off the cement foundation onto gravel slipped and broke his leg in 3 places............
The ride and stay in the ER is another subject but this post is about how it has had an effect that has yet to fade and the residual memories still give Dakota terrors.
After 3 days in the hospital which was a "tap dance"to keep Dakota there and co operative it was 2 months on the bed refusing to get off because he was afraid of breaking his other leg...of course there was no acknowledgement by the school or offer for accommodations to get him back and eventually after a discussion with risk management and their in ability to understand that not only could this incident been avoided but a simple fix with very little cost could solve the problem there was litigation..again not what this post is about.
What Dakota got out of this is a permanent inability to to feel safe any longer on his own 2 feet...he now refused to go anywhere near the sand at the beach because of the instability of the sand, he has major issues with many types of flooring and surfaces...if there is a texture, or a color or even a crack or change in patterns HE FREEZES...
The cast was set improperly which we didn't understand until it was too late and he had pain in his foot and leg while in the cast so he started twisting and pulling his hair to the point of bald spots ...that habit has continued ...it also is my biggest battle as I write this post....it no longer is a way for him to deal with pain but has become a habit that he cannot stop.....He has had toenails removed and a hammer toe and no longer walks like a normal person. His "gait"is not right and I have yet to get a podiatrist to agree that so ething need to be done. The last time we went to Disneyland I had to get a wheelchair half way thruthe visit as his foot was giving out on him.of course all this pisses me off YET we solider
Beyond all of that when the date rolls around .....it obvious that he is well aware of it and he becomes almost traumatized and fixated ....that SOMETHING IS GOING TO HAPPEN...
As early as yesterday morning I noticed he was "touchy"and he had escalated behavior. Had a minor meltdown , was sleeping or napping a couple of times during the day and just an overall sketchy day. Last night he usually sleeps quite well, falls asleep easily and wakes up predictably around the same time..BUT not last night
First thing out of his mouth this morning was "Mom....It's April 27"
I sat down and looked him in the EYES and told him it was Ok and we would have a good day...We
would be careful and I would make sure that nothing happened...
he seemed to be relieved and and trusted me..but I knew until the time passed and the clock struck midnight we wouldn't be out of the woods....
It's now 11:39pm and barring any unforeseen freaky happening I think we made it through about April 27...10 years down....hopefully by the time we hit 20 years I won't be writing about it !!
The short story is that Dakotas Teacher went against the IEP and made him and his 1 on 1 aide go to the baseball field for lunch rather than the quad as described in his goals . This way the teacher could give the other aides in the class their breaks while still covering his own ass by using Daks aide to watch the other kids...
Dakota decided he did not want to be there and started back to the class ..stepped down off the cement foundation onto gravel slipped and broke his leg in 3 places............
The ride and stay in the ER is another subject but this post is about how it has had an effect that has yet to fade and the residual memories still give Dakota terrors.
After 3 days in the hospital which was a "tap dance"to keep Dakota there and co operative it was 2 months on the bed refusing to get off because he was afraid of breaking his other leg...of course there was no acknowledgement by the school or offer for accommodations to get him back and eventually after a discussion with risk management and their in ability to understand that not only could this incident been avoided but a simple fix with very little cost could solve the problem there was litigation..again not what this post is about.
What Dakota got out of this is a permanent inability to to feel safe any longer on his own 2 feet...he now refused to go anywhere near the sand at the beach because of the instability of the sand, he has major issues with many types of flooring and surfaces...if there is a texture, or a color or even a crack or change in patterns HE FREEZES...
The cast was set improperly which we didn't understand until it was too late and he had pain in his foot and leg while in the cast so he started twisting and pulling his hair to the point of bald spots ...that habit has continued ...it also is my biggest battle as I write this post....it no longer is a way for him to deal with pain but has become a habit that he cannot stop.....He has had toenails removed and a hammer toe and no longer walks like a normal person. His "gait"is not right and I have yet to get a podiatrist to agree that so ething need to be done. The last time we went to Disneyland I had to get a wheelchair half way thruthe visit as his foot was giving out on him.of course all this pisses me off YET we solider
Beyond all of that when the date rolls around .....it obvious that he is well aware of it and he becomes almost traumatized and fixated ....that SOMETHING IS GOING TO HAPPEN...
As early as yesterday morning I noticed he was "touchy"and he had escalated behavior. Had a minor meltdown , was sleeping or napping a couple of times during the day and just an overall sketchy day. Last night he usually sleeps quite well, falls asleep easily and wakes up predictably around the same time..BUT not last night
First thing out of his mouth this morning was "Mom....It's April 27"
I sat down and looked him in the EYES and told him it was Ok and we would have a good day...We
would be careful and I would make sure that nothing happened...
he seemed to be relieved and and trusted me..but I knew until the time passed and the clock struck midnight we wouldn't be out of the woods....
It's now 11:39pm and barring any unforeseen freaky happening I think we made it through about April 27...10 years down....hopefully by the time we hit 20 years I won't be writing about it !!
Thursday, April 2, 2015
APRIL is AUTISM Awareness....not Celebration but Information!
A friend shared this and I thought it was very consise .......
April is Autism Awareness Month and today is World Autism Awareness Day! While awareness IS still necessary, I hope that it leads to more action! 1 in 68 are diagnosed with autism. 1 in 42 boys!! These numbers are staggering and continue to rise!
What is Autism?
Autism is a bio-neurological developmental disability that generally appears before the age of 3
Autism impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities
Individuals with autism often suffer from numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sensory integration dysfunction, sleeping disorders, and more
Autism is diagnosed four times more often in boys than girls. Its prevalence is not affected by race, region, or socio-economic status. Since autism was first diagnosed in the U.S. the incidence has climbed to an alarming one in 68 children in the U.S.
Autism itself does not affect life expectancy, however research has shown that the mortality risk among individuals with autism is twice as high as the general population, in large part due to drowning and other accidents.
Currently there is no cure for autism, though with early intervention and treatment, the diverse symptoms related to autism can be greatly improved and in some cases completely overcome.
Autism Facts & Stats
Autism now affects 1 in 68 children
Boys are four times more likely to have autism than girls
About 40% of children with autism do not speak. About 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood
Autism greatly varies from person to person (no two people with autism are alike)
The rate of autism has steadily grown over the last twenty years
Comorbid conditions often associated with autism include Fragile X, allergies, asthma, epilepsy, bowel disease, gastrointestinal/digestive disorders, persistent viral infections, PANDAS, feeding disorders, anxiety disorder, bipolar disorder, ADHD, Tourette Syndrome, OCD, sensory integration dysfunction, sleeping disorders, immune disorders, autoimmune disorders, and neuroinflammation.
Autism is the fastest growing developmental disorder, yet most underfunded
A 2008 Danish Study found that the mortality risk among those with autism was nearly twice that of the general population
Children with autism do progress – early intervention is key
Autism is treatable, not a hopeless condition
April is Autism Awareness Month and today is World Autism Awareness Day! While awareness IS still necessary, I hope that it leads to more action! 1 in 68 are diagnosed with autism. 1 in 42 boys!! These numbers are staggering and continue to rise!
What is Autism?
Autism is a bio-neurological developmental disability that generally appears before the age of 3
Autism impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities
Individuals with autism often suffer from numerous co-morbid medical conditions which may include: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sensory integration dysfunction, sleeping disorders, and more
Autism is diagnosed four times more often in boys than girls. Its prevalence is not affected by race, region, or socio-economic status. Since autism was first diagnosed in the U.S. the incidence has climbed to an alarming one in 68 children in the U.S.
Autism itself does not affect life expectancy, however research has shown that the mortality risk among individuals with autism is twice as high as the general population, in large part due to drowning and other accidents.
Currently there is no cure for autism, though with early intervention and treatment, the diverse symptoms related to autism can be greatly improved and in some cases completely overcome.
Autism Facts & Stats
Autism now affects 1 in 68 children
Boys are four times more likely to have autism than girls
About 40% of children with autism do not speak. About 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood
Autism greatly varies from person to person (no two people with autism are alike)
The rate of autism has steadily grown over the last twenty years
Comorbid conditions often associated with autism include Fragile X, allergies, asthma, epilepsy, bowel disease, gastrointestinal/digestive disorders, persistent viral infections, PANDAS, feeding disorders, anxiety disorder, bipolar disorder, ADHD, Tourette Syndrome, OCD, sensory integration dysfunction, sleeping disorders, immune disorders, autoimmune disorders, and neuroinflammation.
Autism is the fastest growing developmental disorder, yet most underfunded
A 2008 Danish Study found that the mortality risk among those with autism was nearly twice that of the general population
Children with autism do progress – early intervention is key
Autism is treatable, not a hopeless condition
Monday, March 9, 2015
Time Change ?
Anyone else out there experience more than abundance of behavior yesterday? Hmmmmmmm
I know each of our kids display different sensory issues and triggers but Time Change is kinda like holidays .....it has it's own special set of challenges.
As what we call A NT or Neuro typical person we all learn coping mechanisms for lil bumps in our lives...traffic backed up??late for work?? Take an alternate route. restaurant out of your favorite beverage..choose a different one or leave....daylight savings time ......crap,I'm gonna loose an hour of sleep..well at least it's during the weekend so I can compensate.
For our kids a rule is being broken..O M G The world as we know it is ending, there is no alternate route and I cannot escape the inevitable.
Well that's the way it was at our house yesterday. Something I have always said about Dakotas behaviors is most all of them are very unpredictable, also erratic as far as a pattern; however there are few instances where I know trouble is coming and no matter what I do or say it's going down....
Time Change is one of them!!!
It seems so simple and honestly insignificant NOT TO MANY of our children. Although the general outcome is a desired outcome the anticipation and mechanics are NOT.The Media first of shoves it down our throats at every turn...it's on the news , it's on public announcements,even the weather man has a lil clock rotating from 2 am to 3 am ...so it's unavoidable. Then there's the actual anticipation of physically turning the clocks ahead..and when to do it.....in creeps the anxiety. I can't help but think about the old ketchup commercials "A N T I C I P A T I O N " as the red stuff slowly rolls out of the bottle..
The day went relatively well early on. It as the day progressed I saw the tenseness building. The furrowing of the brow..the biting of the lip...the 100 times he asked if his watch needed to be changed yet
I tried to keep some decorum and explain that it was ok we could do it in the morning it was just a regular night .....he wasn't picking up what I was putting down. From evening time on it was apparent we were on the brink of a tornado comin.By about 10 the behaviors were in full swing. Oh and it is never about the time change when the behavior breaks out it's the dog..or the cat...or grandma. Or it's about the TV any number of things to deflect the blame...
Guess the reason I write about this is it's another topic or situation that most people wouldnt give a second thought too...and they are lucky it's not an issue. For Those of us who walk this path it's just another bump in the road. And there are others who will have had a bad or challenging day and not even remember that the time change happened..and wonder why their child was having such a bad day....
Don't think there much that can be done. Just awareness of a pending occurance and a tool belt full of information and ideas to help our kids get thru another "thing"
I know each of our kids display different sensory issues and triggers but Time Change is kinda like holidays .....it has it's own special set of challenges.
As what we call A NT or Neuro typical person we all learn coping mechanisms for lil bumps in our lives...traffic backed up??late for work?? Take an alternate route. restaurant out of your favorite beverage..choose a different one or leave....daylight savings time ......crap,I'm gonna loose an hour of sleep..well at least it's during the weekend so I can compensate.
For our kids a rule is being broken..O M G The world as we know it is ending, there is no alternate route and I cannot escape the inevitable.
Well that's the way it was at our house yesterday. Something I have always said about Dakotas behaviors is most all of them are very unpredictable, also erratic as far as a pattern; however there are few instances where I know trouble is coming and no matter what I do or say it's going down....
Time Change is one of them!!!
It seems so simple and honestly insignificant NOT TO MANY of our children. Although the general outcome is a desired outcome the anticipation and mechanics are NOT.The Media first of shoves it down our throats at every turn...it's on the news , it's on public announcements,even the weather man has a lil clock rotating from 2 am to 3 am ...so it's unavoidable. Then there's the actual anticipation of physically turning the clocks ahead..and when to do it.....in creeps the anxiety. I can't help but think about the old ketchup commercials "A N T I C I P A T I O N " as the red stuff slowly rolls out of the bottle..
The day went relatively well early on. It as the day progressed I saw the tenseness building. The furrowing of the brow..the biting of the lip...the 100 times he asked if his watch needed to be changed yet
I tried to keep some decorum and explain that it was ok we could do it in the morning it was just a regular night .....he wasn't picking up what I was putting down. From evening time on it was apparent we were on the brink of a tornado comin.By about 10 the behaviors were in full swing. Oh and it is never about the time change when the behavior breaks out it's the dog..or the cat...or grandma. Or it's about the TV any number of things to deflect the blame...
Guess the reason I write about this is it's another topic or situation that most people wouldnt give a second thought too...and they are lucky it's not an issue. For Those of us who walk this path it's just another bump in the road. And there are others who will have had a bad or challenging day and not even remember that the time change happened..and wonder why their child was having such a bad day....
Don't think there much that can be done. Just awareness of a pending occurance and a tool belt full of information and ideas to help our kids get thru another "thing"
Thursday, February 26, 2015
Compartmentalization
One of the most prevalent characteristics that Dakota displays with his Autism is "Compartmentalization".....the word is pretty self explanatory
I have noticed from a very young age Dakota always seemed to prefer specific activities with one specific person.....or preforming an activity either in a specific time frame, hour or day...
For me is it rather confounding, but I also understand it's just another trait of his disorder ...
As an example he had a coach that he always went bowling with....we lost that coach...and every attempt since then to go bowling has been unsuccessful ....to the extent of aggressive behavior towards those trying to get him bowling again....
It goes much deeper than trips to the bowling alley but I guess my point about identifying and discussing it is that there is such a delicate balance between trying to offer opportunity and forcing an action or activity because it's is for the benefit of the individual. Again it goes back to picking your battles...you have to decide what is imperative for your child to experience and what can be excluded.
It is Frustrating as hell; as is a lot of dealing with Autsim. Keeping a perspective on what is exactly the focus and it is truly for the betterment of the child or is it because you want them to feel or hear or experience something that was a "staple" for your childhood or young adulthood or for any "typically"developed peer....like going to prom...or bowling, or a movie with friends, or the mall, talking on the phone ...any number of experiences that we identify as growing and socializing.
I also believe that there comes a time when you have to let the individual have some kind of control over his "world"( and/or environment)and if he only wanted to do something with one specific person and that person is no longer a part of his world ..then who am I to say that he needs to do it with some one else...? We have to understand that it all a part of the complex disorder called Autism and although our kids have permenent aspects that will never leave them they still do grow and develop in other ways and we have to let them be able to to do what they want and can do....
Guess there no right answer, it has to be what works for your families situation.all you can do is be as supportive and encourage your kid to do what he wants to do...and to live as much life as he can!
I have noticed from a very young age Dakota always seemed to prefer specific activities with one specific person.....or preforming an activity either in a specific time frame, hour or day...
For me is it rather confounding, but I also understand it's just another trait of his disorder ...
As an example he had a coach that he always went bowling with....we lost that coach...and every attempt since then to go bowling has been unsuccessful ....to the extent of aggressive behavior towards those trying to get him bowling again....
It goes much deeper than trips to the bowling alley but I guess my point about identifying and discussing it is that there is such a delicate balance between trying to offer opportunity and forcing an action or activity because it's is for the benefit of the individual. Again it goes back to picking your battles...you have to decide what is imperative for your child to experience and what can be excluded.
It is Frustrating as hell; as is a lot of dealing with Autsim. Keeping a perspective on what is exactly the focus and it is truly for the betterment of the child or is it because you want them to feel or hear or experience something that was a "staple" for your childhood or young adulthood or for any "typically"developed peer....like going to prom...or bowling, or a movie with friends, or the mall, talking on the phone ...any number of experiences that we identify as growing and socializing.
I also believe that there comes a time when you have to let the individual have some kind of control over his "world"( and/or environment)and if he only wanted to do something with one specific person and that person is no longer a part of his world ..then who am I to say that he needs to do it with some one else...? We have to understand that it all a part of the complex disorder called Autism and although our kids have permenent aspects that will never leave them they still do grow and develop in other ways and we have to let them be able to to do what they want and can do....
Guess there no right answer, it has to be what works for your families situation.all you can do is be as supportive and encourage your kid to do what he wants to do...and to live as much life as he can!
Monday, February 2, 2015
Vaccinations and a discussion among friends...
There has been a lot of attention to vaccinations and autism recently due to the out break of measles as well as a few other childhood illnesses...
Many believe that science has provided sufficient evidence that shits are not a causation of Autism...my reply is simply that I have sat I a room of parent who know that they have had typical pregnancies, births and development and one day at the doctors office for a regiment of shits and their children literally woke up the next day and started regressing ...so BELIVE what you will and say what you will but I know in my heart there is some piece of evidence missing in this scenario..
So friend joking posted an entry on my timeline that upset me as well a few others.(to the effect that vaccinations don't cause autism) which then turned end into a conversation and learning experience...we all are better for it..
My take is this vaccinations did not play a role in my child's autism at least I don't think it did as we dealt with development from birth..BUT I did see my child end up in the ER with seizures after being give. The DPT(Diptheria, Pertussis, Tetanus)..,and I ALSO have witnessed another family member have reactions from flu shots that were multi dose viles which had Thimerisol or more commonly know as mercury...so I know that medicine as much as we all want to trust it has it's draw backs and it is still one big experiment..and what works for one doesn't necessarily work for all...
From that our conversation ended up with a question about how I feel about a recent interview that President Obama had on the Today show, where he spoke about the measles outbreak and that science has "debunked"the theory of causation towards autism....
And this was my reply.....many will agree and many will not ..it is merely my opinion
...IMHO...he's no different than anybody else...and he can believe what he think is "proven" ..Just because he takes that stance doesn't mean I have to like it ..but it doesn't mean that I do t think he's done some good for our country as well...I have said this befor the Bushes in general I detest..everything about them BUT I still believe that both of them ran for president with the greatest intentions of what they THOUGHTwas right for our country...I truly believe no matter who it is they don't run to make an ass out of themselves or to screw up .....AND truthfully Obama is the last of a long line of many who believe it's been "disproved" but here's my take...each and everyone of us has right to smoke or drink or stuff our faces till we can't walk and there will always be a dissenting voice;whats happening specifically with the vaccination issue is this...we have manged to erraticate many illness with the power of vaccines and NO one wants that to revert,institutions, counties school districts,regional centers are finding that people are not going to cave to the demands of what is precieved as a safety issue JUST BECAUSE...everyone else is...So when we protest or standup or even stand out by refusing to vaccinate...they don't have much recourse to force us .....THEN ALONG COMES AN OUTBREAK.....just what they are drooling over because now they can point their lil fingers and say "ah-ha!"we got cha now.....you don't want to vaccinate then you can keep your kids out of school till the quarantine expires....It's not because they think our kids are truly contagious it is merely a POWER GRAB...to get back at us because we don't conform....
Many believe that science has provided sufficient evidence that shits are not a causation of Autism...my reply is simply that I have sat I a room of parent who know that they have had typical pregnancies, births and development and one day at the doctors office for a regiment of shits and their children literally woke up the next day and started regressing ...so BELIVE what you will and say what you will but I know in my heart there is some piece of evidence missing in this scenario..
So friend joking posted an entry on my timeline that upset me as well a few others.(to the effect that vaccinations don't cause autism) which then turned end into a conversation and learning experience...we all are better for it..
My take is this vaccinations did not play a role in my child's autism at least I don't think it did as we dealt with development from birth..BUT I did see my child end up in the ER with seizures after being give. The DPT(Diptheria, Pertussis, Tetanus)..,and I ALSO have witnessed another family member have reactions from flu shots that were multi dose viles which had Thimerisol or more commonly know as mercury...so I know that medicine as much as we all want to trust it has it's draw backs and it is still one big experiment..and what works for one doesn't necessarily work for all...
From that our conversation ended up with a question about how I feel about a recent interview that President Obama had on the Today show, where he spoke about the measles outbreak and that science has "debunked"the theory of causation towards autism....
And this was my reply.....many will agree and many will not ..it is merely my opinion
...IMHO...he's no different than anybody else...and he can believe what he think is "proven" ..Just because he takes that stance doesn't mean I have to like it ..but it doesn't mean that I do t think he's done some good for our country as well...I have said this befor the Bushes in general I detest..everything about them BUT I still believe that both of them ran for president with the greatest intentions of what they THOUGHTwas right for our country...I truly believe no matter who it is they don't run to make an ass out of themselves or to screw up .....AND truthfully Obama is the last of a long line of many who believe it's been "disproved" but here's my take...each and everyone of us has right to smoke or drink or stuff our faces till we can't walk and there will always be a dissenting voice;whats happening specifically with the vaccination issue is this...we have manged to erraticate many illness with the power of vaccines and NO one wants that to revert,institutions, counties school districts,regional centers are finding that people are not going to cave to the demands of what is precieved as a safety issue JUST BECAUSE...everyone else is...So when we protest or standup or even stand out by refusing to vaccinate...they don't have much recourse to force us .....THEN ALONG COMES AN OUTBREAK.....just what they are drooling over because now they can point their lil fingers and say "ah-ha!"we got cha now.....you don't want to vaccinate then you can keep your kids out of school till the quarantine expires....It's not because they think our kids are truly contagious it is merely a POWER GRAB...to get back at us because we don't conform....
I also believe that out society has become so litigious that there is always the fear if for instance the school districts didn't attempt to do anything then there would be some Ya-WHO..that would say they were derelict in their duties of protecting the other children.....
There's no pat answer here..it is a double edged sword.
One might liken it to the gun Struggle we are having In This country..where certain individuals believe their rights are being threatened or taken away and they aren't gonna let that happen..well when it comes to my kid and others who have walked the same path for their kids ....again in my humble opinion.much more important than a cold piece of steel.
Coming full circle to the presidents opinion and observations ..I do t have to like all he does to still support hi and it is the same with friends,family, professionals, politians ...you can still appreciate an individual even if you don't totally agree with everything they do....OK down off my soap box!!!
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