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!

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.... 

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!!!

Almost a month into the New Year...

Tonight it just dawned on me that tomorrow will be the last day of the first month of the year???What the Hell??? I know that the world is moving in warp speed and all of us are caught up in the daily operation of life...Where does time go???

I also realize that I posted ramblings about how autism seeps into our lives almost like becoming who you care for...or at least mimicking behavior simply because of extreme exposure to it..I do believe it is true to some extent..you can't help but anticipate your child's issues and needs try to edit the event that occurs and many times you go to great lengths to prevent,  over ride or avoid situations I. Order to keep your child calm ...as i stated...osmosis!!!

Oh I digress...my observation tonight is how quickly time flies, how inconsistent I am with posting and how many things keep me from posting more.
We actually had some vacation time this month half in Vegas over New Years...very fun. Very successful, colder than crap..and really only one meltdown over the course of several days..then we spent several more days at the beach ..made progress towards actually stepping on to the sand ..didn't make it but got closer, had several challenges ..changes in routine but, made it through without ANY  behaviors...had gorgeous weather  and a successful trip.

As I have stated befor I try to not make this a blog where if you miss a day you miss a post...for several reasons including my own time constraints as well as most of my posts are directed at a specific incident and the lesson learned..and how we got through it...rather than manufacturing filler. Plus it always seems to come out better when an occurrence trips my writing...

Finally in concurrence with the last paragraph I have discovered that my writing is much better and more poignant when something has happened or we have gone thru an experience. I will start composing in my head and sometimes loose it befor I get it written...when I actually get the time to sit down and write often times I loose the thought...

Perhaps I am not the perfect blogger but I will reiterate my intention is simply to help anyone learn more about life with Autism and to supply "tools"to those who live with it on a daily basis by blogging my insights, observations and how we dealt with it !

Well a new month is upon us
Who know what it will bring..for now I can only say a renewed effort to post more is in my heart and soul!!!!Happy New Year

Autism by Osmosis

After 28 years and many encounters with a roller coaster ride of emotions I have come to the conclusion that I suffer from Autism by Osmosis....I know many of you many of you probably think I am off my rocker and others probably completely understand my thought process.

There is often times a "bi-polar" or "manic - depressive " condition to what a caregiver or parent goes through when living with, dealing with, or merely trying to understand what your individual is experiencing or acting out about...Even when there is a positive behavior like conquering or completing a task never befor preformed...there is a vast array of emotions . Extremely high and overwhelmingly low. I know I am not the only one who feels this....

What brought me to the blog tonight was an overwhelming feeling of sadness and in ability to get my son to understand the seriousness of things that go around in my mind on a daily basis...First I want to scream and cry and yell "Don't you get it...Don't you realize you are an adult and you should be able to do these things for yourself???""what happens if I am not here to help you?" "When I get old and can't help you" "who will do it"..... Then comes the reasoning ....well you can do this..or you can do that then why can't you do this??? Now comes the surge in the other direction guilt and sorrow and helplessness.....he cannot help it because he can't do this that or the other thing, why am I so hard on him, why did I let it upset me, do others struggle with these same thoughts? Am I whining? Am I wimp? Why can't I Take it ?  Why does it get to me?
Then the slump goes even further"What's going to happen to him when I am gone?" "Who will love him like I do? " " Who will give him the same care.".Will he sit I a corner and drool and no one will provide a "life"for him.....

I get angry And I yell...I feel like I have lost all hope.
Just when I think the screw is a loose as it's gonna get a "wash" of new thoughts and optimism comes like somewhere some one knew I needed to tighten the screw before it fell off...

I see Dakotas behaviors sometime and I cannot imagine the world he has to deal with every day. I see him get mad and act out and get angry, even tho he has a voice his body often reacts. It's not his fault it's autism and it's can be pretty shitty. How can I be mad at him when it IS his disability..

The ups and downs happening so quickly are difficult to grasp, when We live in a world with an individual who lives these emotions it's difficult to not adopt some of the same behavior. it's not our fault it's Human Nature to adapt to your environment and that's why I believe it's easy to be Autistic by Osmosis!

General State of Mind

It occurs to me that people who check in here, for the most part are walking the journey of Autism somewhere on their lives ....but occasionally, I get a person who is either researching, curious or may be even an aquaintance that just doesn't have to live with the things most of us do who are part of this crazy diagnosis.

If I read from that point of view, it often seems like I am whining or may seem to think I have been through more since Dakota is older..
My purest of intentions are simply to present a subject that "has come into play"in our house..state the facts , observances and whatever solutions...if any ...that worked for us.
I am by no means an expert,except when comes to my kid and even then, there are times when I don't get it...
The whole point is to merely describe what we experience and tell you how we handled it with the hope that somewhere down the line a light will go off and you will find your own solution creatively from what happened to us...

As far as the whining goes I never intend to whine, I am not complaining .... Sometimes it just gets overwhelming and is definitely difficult to see the light at the end of the tunnel because honestly in our case I don't think there is one.

My Heart and My mind have come to a resolve that this is life and this is how life will be till the end...it is not whining it's observational; and being in a single parent home all the weight of everything lays on me...I am OK with that. It is my job and my responsibility and honestly it has become a general State of Mind..

Ramblings about the diagnosis....

From the time of Dakotas birth we always knew we would have "mountains to climb"...This was not a typical birth and a baby/ infant that came home and developed like everybody else's kid...

When you first enter into the world of Autism you get certain repetitious facts ..1 being that usually or most cases of the onset of autism occur between 18 - 36 months . the child usually has an uneventful birth,they come home and seem to be as any other child and something triggers them and they start a reversal process of loosing what they already attained...they are walking, talking,eating and growing and all of a sudden it comes to a screeching halt...Most specifically the obvious sign is loosing language and social skills are "the tells".
Dakota was different as there was a traumatic birth and many complications , so it was apparent from the first day  there would be challenges. never knew at that point that Autism would be part of the mix.

Getting a diagnosis WAS and STILL IS......difficult because of the "spectrum".  Most individuals with a disorder or disability have similar traits . With autism the saying is if you have met an Autistic person ; you have only met one Autistic person...the deficits, behaviors, level of functionality and other issues are so diverse they are very rarely identical in persons who are Autistic.Thats not to say,that especially someone who lives or cares for an individual cannot spot another autistic individual  a  MILE AWAY....but it is that they are so peculiar and usually out of place when it comes to a social or communal situation and the rest of us "typically functioning" people would react similarly....it's easy to spot the "behavior" 

Having  said that it is quiet another thing to get a diagnosis because of the same reasons.
 In our particular case  Dakota was observed and reviewed by Inland Regional Center at 
the age of 3 and we were told OH No he's not autistic because he's too social. He makes eye contact..what wasn't considered was that he had intensive  Occupational and Physical Therapy from 6 weeks ..so he was doing a lot of things that were not described on the DSM IV...so they labeled him  mildly to moderately mentally retarded...AND to this day I am still fighting them about this DX....
At age 7  finally after being on a waitlist for 2 years we were able to go to the Diagnostic Center at Cal State LA..for a week long probative observation which at the end they assemble all the individuals and their reports together  for a roundtable and discussion on their recommendations for the individual and they submitt these to the school district and the other supporting ..agencies
We got the Autism DX there...first day , first appointment with the medical Doctor..Joanne Weigel..I was relieve and really thought this was going to be a GOD send......NOT. Essentially it's is a great place and their work is great  up unfortunately  the School Districts didn't care and didn't apt attention to any if not all of the recommendations. Very frustrating. I have carried on and I did the best I could to fight for Dakota to get him the 
best opportunities. BUT it was always 2 steps forward 1 1/2 steps back...I do believe that it's a little better now. Since more and more kids are coming with a DX . In the 80's it was crap...

People mis judge, assume and under estimate our kids...they are labeled with all kinds of  I abilities and certainly a majority of people including many professional do not realize their intelligence..it's quite sad. Just today Dakota was looking at the TV guide on his iPad and he was watching CSI ethereal was a drop down box with a reference to one of the stars leaving the series at the end if this season???he turned to me and read "Exclusive..George Eades leaving CSI rafter this season " then He began to read the article. I am sorry he is NOT mentally referred if he can read that article and pronounce all!the words correctly....yet some YAHOO named Bob Chang "labeled him "25 years ago and IRC clings on to that DX....

I have for the past 4 to 5 years been pressing them to change this DX and they refuse? So 
now we have to go and have a complete re evaluation....I am not afraid of it but I think it is a complete utter waste of time and money that the State will be spending on something they paid for years ago,when we went to the Diagnostic center.

We as parents don't need the DX but unfortunately everyone else does..guess that why it becomes important for us!