There was an inquiry by one of the "poster" on a web site about helping adults with Autism--AND SO MY RANT RAGES ON
An observation I have been making for the past 3 or 4 years is that there is very little if any thing out there
I will post my response rather than repeat what has already been written:
The one suggestion I would give is to contact the Department of Rehabilitation. Don't know what they require or if you would have to do an evaluation I would suppose that your Regional Center might be able to help BUT they too can be difficult to get on board--- UNFORTUNATELY this has been my lament for several years now--- So many of the parents on these web groups are at the beginning of the journey searching for info and support and potential bio medical strategies for their children who are very young --- AND THAT IS NOT TO DISCOUNT THAT --- But what I have been discovering is that there is so much more available to the early years and when school comes to an end its like they fall of the radar! You get to High School and you have done everything in your power to educate and socialize your child and you discover that they are still Autistic and there's very little; close to nothing out there--- Most of the "programs " out there after school are "warehousing" situations for young adults with all disabilities.There are a few junior college opportunities but no support like you have in lower education K-12.We all hope and pray that our diligence over their formative years will "rescue" them from an adult life of disability but in my particular case I am finding now that I should have focused much more on what comes after school . As they say hindsight is 20/20. Once they leave the High School campus there is no Special Ed Stater Bros. Market; there is no Special Ed Del Taco; there is no Special Ed AM/PM gas station or there is no Special Ed library for that matter--- My point is the community is not informed nor equipped to readily accept our kids without some type of recognition or accommodation. They become adults with very little visual indication that there is anything different with them. This is a challenge for us to find appropriate vocations and social situations. They are in a no-mans land of either typical or disabled and they really do not fit in either . Again just my observation and opinion.
I think this is why we do have adults out there that are older and not recognized or diagnosed. Years ago they just didn't make the distinction of a child who had a hard time socializing or learning -- they would just say that they were "slow" or did not "get it" and they were pushed thru our educational system and POOF they all of a sudden had to go out in the world and learn to deal with it--- I believe that there has to be thousands out there who are in this situation AND IT SUCKS. I truly believe that you can find help but you have to dig. Its not easy,and without a diagnosis it will be even harder for someone who is older and just discovering that they could use some support--
I know this is one of my worn out rants but it has become a bigger reality as the years go on and perhaps why I have this dream of a "Center for Autism" that embraces all facets of life --living with Autism. It should a YMCA of sorts encompassing vocational and social training but also helping siblings parents and professionals learn how to support those who live with Autism.
More on the center in future posts
For now I continue to look for alternatives for or children as they grow into adults!
Sunday, November 30, 2008
Computer crap
I am having a time with this new journal---
When I was with AOL journals all I had to do is click and I was there now I have to log in and my brain is crowded with passwords and user IDs that I cant remember WOW "oldtimers" is setting in!
I made the mistake of trying to copnvert to this BLOG at least 2 other times several months ago-- what happened was when I tried to log on here to ad an excerpt I kept getting directed back to theother ones I started but never wrote much on--- Man-O-Man was I frustrated-- I keep saying its my age and computer "in-ept-ness"---is that a word---?
I was pissed off
Anyway I think I have found my way now --hopefully I will remember how I made it here so I can ad easily in the future!
When I was with AOL journals all I had to do is click and I was there now I have to log in and my brain is crowded with passwords and user IDs that I cant remember WOW "oldtimers" is setting in!
I made the mistake of trying to copnvert to this BLOG at least 2 other times several months ago-- what happened was when I tried to log on here to ad an excerpt I kept getting directed back to theother ones I started but never wrote much on--- Man-O-Man was I frustrated-- I keep saying its my age and computer "in-ept-ness"---is that a word---?
I was pissed off
Anyway I think I have found my way now --hopefully I will remember how I made it here so I can ad easily in the future!
Sunday, November 23, 2008
Blood Work-- What a Challenge
When Dakota was barely out of the NICU we had to start blood work because of seizure activity--- After seeing all the ingenious equipment the the hospital had for those tiny babies I thought surely there would be "ingenious " ways to take blood from an infant.WRONG
The first time I went to the lab they sat me down and had me hold Dakota in my lap as they wrapped that wide rubber band around his tiny little arm-- Before it was all over they had to lay me down!
I got smart as the years progressed and made sure that the same lab tech-- Wanda was always available for Dakota. I would plan every thing-- The time of day when it was least busy or noisy and of course when all the other elements like no change in doctor or location were present --we would walk in and BAM it worked like a charm.
The seizures stopped and we no longer had to take blood and believe me when we had to think about blood work recently it has become
"a whole new can of worms"!
So I sprang into action--believe me it has not been easy but this is how it goes-
Once I know the doctor is ordering a test -- I inform him it may not be a timely test and that if he needs something immediately that he needs to make some kind of arrangements to possibly draw the sample right there in the room other wise we will do the best we can--- when we can----
Its starts with a visit to the facility perhaps when we are picking up a prescription--- and we just cruise by the lab---
Then the next time I stop and strike up a conversation with one of the lab techs on our second visit-- short and not obtrusive and I try to bring Dakota into the "loop"
Third time I had Dakota walk into the lab and say hi to the lab tech-- She looked at him and said aren't you ready to let me take your blood and he shook his head and ran from the room-- so went went home -- NO hassles
Finally on the fourth try and over a month later we walked in and she said
"OK go check in " and B I N G O He turned around walked straight to the desk checked in! What a tremendous feeling it was to achieve success.
He walked in, sat down, put his arm out and did not flinch!
We had a second run recently; although it was still a challenge we again had a positive outcome-- We ran into a bump where the lab order had gone dormant cuz it was taking longer than usual.When the stars had aligned and Dakota was willing to get tested they started to give me a problem about the lab orders--It was all I could do not to loose it . I asked to speak to a supervisor and explained the extenuating circumstances-- before it was all over the Lab Tech and her supervisor pulled a few strings, knowing the situation, and before I could blink Dakota and I were walking out with another "one" in the win column!
So OK its not easy; you have to be creative and you have to find what works for your child but believe me you will find away! Hopefully it wont be kicking and screaming. Again don't get stressed about it, find a way for you and your child to have a successful positive experience so the next time will be easier.
It can be done.
The first time I went to the lab they sat me down and had me hold Dakota in my lap as they wrapped that wide rubber band around his tiny little arm-- Before it was all over they had to lay me down!
I got smart as the years progressed and made sure that the same lab tech-- Wanda was always available for Dakota. I would plan every thing-- The time of day when it was least busy or noisy and of course when all the other elements like no change in doctor or location were present --we would walk in and BAM it worked like a charm.
The seizures stopped and we no longer had to take blood and believe me when we had to think about blood work recently it has become
"a whole new can of worms"!
So I sprang into action--believe me it has not been easy but this is how it goes-
Once I know the doctor is ordering a test -- I inform him it may not be a timely test and that if he needs something immediately that he needs to make some kind of arrangements to possibly draw the sample right there in the room other wise we will do the best we can--- when we can----
Its starts with a visit to the facility perhaps when we are picking up a prescription--- and we just cruise by the lab---
Then the next time I stop and strike up a conversation with one of the lab techs on our second visit-- short and not obtrusive and I try to bring Dakota into the "loop"
Third time I had Dakota walk into the lab and say hi to the lab tech-- She looked at him and said aren't you ready to let me take your blood and he shook his head and ran from the room-- so went went home -- NO hassles
Finally on the fourth try and over a month later we walked in and she said
"OK go check in " and B I N G O He turned around walked straight to the desk checked in! What a tremendous feeling it was to achieve success.
He walked in, sat down, put his arm out and did not flinch!
We had a second run recently; although it was still a challenge we again had a positive outcome-- We ran into a bump where the lab order had gone dormant cuz it was taking longer than usual.When the stars had aligned and Dakota was willing to get tested they started to give me a problem about the lab orders--It was all I could do not to loose it . I asked to speak to a supervisor and explained the extenuating circumstances-- before it was all over the Lab Tech and her supervisor pulled a few strings, knowing the situation, and before I could blink Dakota and I were walking out with another "one" in the win column!
So OK its not easy; you have to be creative and you have to find what works for your child but believe me you will find away! Hopefully it wont be kicking and screaming. Again don't get stressed about it, find a way for you and your child to have a successful positive experience so the next time will be easier.
It can be done.
Saturday, November 22, 2008
Further down the road--
After you have been traveling this journey of Autism for awhile you will realize that the "scenery" will change. What I mean by that is; what you focus on when your child is first born and diagnosed is different from the years you spend banging your head against the wall as you fight with the schools;then you realize that school is about to come to an end and you are faced with another challenge of social acceptance and community involvement not to mention having our kids ready to exist in this world someday without us.
I have spent hours and hours with many parents on several websites and support groups who are all at different places on the "trail". What you find is so many people in so many different situations all with different frames of mind and battles ensuing. So many are on the brink of nervous breakdowns or heart attacks because of the challenges Autism presents. Everywhere you turn it is a struggle. Regional Centers which were created specifically to HELP our kids and would not exist without having to service our kids, schools and school districts always unwilling to accommodate or provide what they should and of course other governmental agencies like IHSS and CDE that always present road block after road block before they succumb to helping you and finally there is the medical profession who should have some basic understanding about Autism but they never cease to amaze me how ignorant they can be----
Don't get me wrong I am not bad mouthing these people but most of them JUST DO NOT GET IT--and they wont or don't take time to learn about out kids before they try to "service" them.
Well this rant is going in a different direction than I intended when I sat down to write ----So I will re-direct and get back on track
My observation is this; as you travel down the path things change and it is so important to not let "a moment in time" to get the best of you-- You have to fight and you have to stand up for what you believe BUT : "This too shall Pass"
I reflect on several situations I beat myself up only to find that a year or 2 down the road what I fought so hard for was not even important anymore. I mean everything in its own way has pertinence but the level of importance has faded with age.
I guess what I am trying to say is that fight for what feels right; never let go of anything you know is important even if it is in the "moment" but don't bust a gut over it, because somewhere further down the road you will recognize that there is a new battle; a new issue; a new horizon to conquer. Try not to focus so keenly on the present and be more accepting of the broader challenges of tommorrow. I think its a much better plan for you and your child.
I have spent hours and hours with many parents on several websites and support groups who are all at different places on the "trail". What you find is so many people in so many different situations all with different frames of mind and battles ensuing. So many are on the brink of nervous breakdowns or heart attacks because of the challenges Autism presents. Everywhere you turn it is a struggle. Regional Centers which were created specifically to HELP our kids and would not exist without having to service our kids, schools and school districts always unwilling to accommodate or provide what they should and of course other governmental agencies like IHSS and CDE that always present road block after road block before they succumb to helping you and finally there is the medical profession who should have some basic understanding about Autism but they never cease to amaze me how ignorant they can be----
Don't get me wrong I am not bad mouthing these people but most of them JUST DO NOT GET IT--and they wont or don't take time to learn about out kids before they try to "service" them.
Well this rant is going in a different direction than I intended when I sat down to write ----So I will re-direct and get back on track
My observation is this; as you travel down the path things change and it is so important to not let "a moment in time" to get the best of you-- You have to fight and you have to stand up for what you believe BUT : "This too shall Pass"
I reflect on several situations I beat myself up only to find that a year or 2 down the road what I fought so hard for was not even important anymore. I mean everything in its own way has pertinence but the level of importance has faded with age.
I guess what I am trying to say is that fight for what feels right; never let go of anything you know is important even if it is in the "moment" but don't bust a gut over it, because somewhere further down the road you will recognize that there is a new battle; a new issue; a new horizon to conquer. Try not to focus so keenly on the present and be more accepting of the broader challenges of tommorrow. I think its a much better plan for you and your child.
Sunday, November 16, 2008
It's all in there!!!
One of the most perplexing things about this disability is the ever present question of what computes and what eludes our children---For the most part as you grow with this Damn Autism you realize that your child has a lot more going on than any one wants to give him credit for---
There are professionals and educators who continue to politely "placate" your insistence that your child "gets it" or knows more of whats going on than any of us think.[wink ;-} wink ;-}]
Well I have two short stories to again prove that damn "pros" wrong!
Over 1- years ago Dakota came home with the first and only joke he has ever told me --
Do you know what time it is when an elephant sits on your fence?
Time to get a new fence--hahahahahahaha
A couple of weeks ago on "the Price is Right" Rich Fields the announcer was doing the showcase at the end of the show and they used this joke with a twist---he said "Do you know what time it is when an elephant sits on your piano?" "Its time to get a new Baby Grand Piano"
WELL the look on Dakotas face was priceless-- he heard the joke and got a look on his face and he said "what the hell they used MY JOKE!"
I could not believe that he not only understood the joke but the fact that they tweaked it for the show and he referred to it as "his joke"
just floored me-----
The second incident was funnier yet----I have a pretty messy house but I have one rule-- as much as I love our dog --she can go anywhere in the house EXCEPT the bed---Well I was out in the front of the house and I heard my Mom getting after Dakota about the dog being on the bed. Of course I started hollering for him to get the damn dog off the bed and the more I hollered the more he laughed and decided he was not going to do what I asked him to do---- So I went back and removed the dog and left the room. About 10 minutes later I went back there to talk to him and check to make sure he had not put the dog back up on the bed and he looks at me and says " Mom when you are dead and in the ground then I can put Carmen on the bed!"
O M G I was so stunned I did not know what to say
It was so profound that not only was he responding the way a typical kid would but the fact that he had an understanding of the rules and just how he would manipulate those rules once I wasn't around anymore.
It was his ability to utilize a thinking process that most seem to believe he does not possess--
It may have been a small window of clarity or it may be something ever present but the point is
AGAIN NEVER NEVER GIVE UP and NEVER NEVER allow someone to convince you that your child will never learn or possess that which you know it possible!
Its all in there---- sometimes you just have to wait for it to surface!
There are professionals and educators who continue to politely "placate" your insistence that your child "gets it" or knows more of whats going on than any of us think.[wink ;-} wink ;-}]
Well I have two short stories to again prove that damn "pros" wrong!
Over 1- years ago Dakota came home with the first and only joke he has ever told me --
Do you know what time it is when an elephant sits on your fence?
Time to get a new fence--hahahahahahaha
A couple of weeks ago on "the Price is Right" Rich Fields the announcer was doing the showcase at the end of the show and they used this joke with a twist---he said "Do you know what time it is when an elephant sits on your piano?" "Its time to get a new Baby Grand Piano"
WELL the look on Dakotas face was priceless-- he heard the joke and got a look on his face and he said "what the hell they used MY JOKE!"
I could not believe that he not only understood the joke but the fact that they tweaked it for the show and he referred to it as "his joke"
just floored me-----
The second incident was funnier yet----I have a pretty messy house but I have one rule-- as much as I love our dog --she can go anywhere in the house EXCEPT the bed---Well I was out in the front of the house and I heard my Mom getting after Dakota about the dog being on the bed. Of course I started hollering for him to get the damn dog off the bed and the more I hollered the more he laughed and decided he was not going to do what I asked him to do---- So I went back and removed the dog and left the room. About 10 minutes later I went back there to talk to him and check to make sure he had not put the dog back up on the bed and he looks at me and says " Mom when you are dead and in the ground then I can put Carmen on the bed!"
O M G I was so stunned I did not know what to say
It was so profound that not only was he responding the way a typical kid would but the fact that he had an understanding of the rules and just how he would manipulate those rules once I wasn't around anymore.
It was his ability to utilize a thinking process that most seem to believe he does not possess--
It may have been a small window of clarity or it may be something ever present but the point is
AGAIN NEVER NEVER GIVE UP and NEVER NEVER allow someone to convince you that your child will never learn or possess that which you know it possible!
Its all in there---- sometimes you just have to wait for it to surface!
Time to get back into the saddle!!!
Well the shock and adjustment have settled down i my brain so now it is time to start writing again---
I have had a lot of thoughts and wanted to post but as life goes things have been a bit busy and overwhelming recently ;
Hopefully I will get into a rhythm soon!
Between Dakota returning to school, Halloween and colds and flu the past week or two I found myself challeneged to find time to sit down an "compose " my thoughts!
The holidayws are upon us and things will continue to be a challenge but I hope that I will find specific time to allot for my "rants and raves"
I have had a lot of thoughts and wanted to post but as life goes things have been a bit busy and overwhelming recently ;
Hopefully I will get into a rhythm soon!
Between Dakota returning to school, Halloween and colds and flu the past week or two I found myself challeneged to find time to sit down an "compose " my thoughts!
The holidayws are upon us and things will continue to be a challenge but I hope that I will find specific time to allot for my "rants and raves"
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