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..
Friday, December 19, 2014
Monday, December 8, 2014
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!
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!
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