I find strength and motivation every time I get an email from someone who has taken a few minutes to read my "rantings" and observations. I guess because it is the "Element of the Unknown" that I have discovered with Autism.
I am quite sure that any parent who has a "challenged" "disabled"or "special" child sees their abilities when others do not. Time and time again you have professionals who observe assess and comment on what they, or the entity they represent, "thinks" is the right choice or decision. More times than not we, as parents, come away from those meetings with malice in our hearts because we know that our kids are better than what "those" people think. {And of course if you are one of those professionals reading this,you probably think I am off my rocker and have a slanted opinion because I am prejudice--YOU are certainly entitled to your opinion but here I am RIGHT. AND PERHAPS YOU MIGHT LEARN SOME INSIGHT IF YOU CONTINUE TO READ THE REST OF THIS POST!}
I agree that they call it a disability or whatever "label" you want to give it because there are deficits. That our kids need special help and augmentation to navigate through life and our community. My opinion is that Autism is different than other challenges. That's not to say that other kids with other challenges don't have hope or abilities but what I know for a fact is that after living with Autism for 22 years I have observed and seen things that others with different diagnosis' have not.
Of course complicating that situation are people who have more than one diagnosis.{That's another subject all together}
This is what I think:Kids who have diagnosis of other disabilities have a more defined and researched "site map"! They have many more years of study and observation.Autism is still a New Frontier. Professionals will often say "oh he will never talk or he will never live independently"; they JUST DO NOT KNOW! They do not have the science or years of research to support those statements. I, however can say that being a mom 24/7--365, have seen many examples of abilities coming to fruition that I was told would not. When I refer to the "Element of the Unknown" I truly believe that Autism is particularly strange in that a neuropath can block an ability that the child or person has--! For example it might be said that a person cannot carry a conversation when in actuality they have the ability and motivation to have a conversation but the brain has manufactured a block or static that prevents the person from having a conversation. Essentially my point is that its not the inability to perform a task it is the bodies physicological make up that PREVENTS the person from performing the task.
It is not that the body has a deficit that is irretrievable or damaged beyond repair, it is more that its "in there" and how do you "fix" the body so you can allow it to recover?
Many respond with different diets or strategies that cleanse and purge the body and have been successful.
Many more have kids that don't respond to those strategies but they continue to search for what helps their child.Its a very individual disability.
TIME seems to be a benefit to us. Every day I see a baby step or a task performed that I never had seen before and I continue to hold out hope. I also make sure that the "nay-sayer" that told me it would never happen hears all about the progress. I feel it is our duty to continue to inform those who serve our kids.
What we as parents and caregivers of Autistic individuals have to remember is that we know our kids better than anyone else. We have to be diligent to keep educating others and looking for every opportunity to blend our kids in the community not only for their benefit but also for others to continue to learn, accept and include those in society who brings something a little different to the table!
APRIL is AUTISM AWARENESS month!
Go out and make others aware.
Most of all don't be afraid to try something new --
I have found volunteering has been a great place to start.
Usually they are happy to include everyone.
Monday, April 13, 2009
Monday, April 6, 2009
You never know when "it's" coming
It being behavior, meltdown, blow out, freak out, flip out. I guess that just about sums up the names you want to give--IT!
Just hours before we had our "E ticket" ride I was talking to someone about how unpredictable this damn Autism is! That as a caregiver of someone you love, you want to celebrate success and acknowledge personal growth. You want to breathe just a little easier with each hour or day that goes by and you have had either a calm day or a day where you see some control or self monitoring.But it is the element of the unknown and unpredictable that slams you back to earth when you have one of those moments when "it" happens .
Most of all people who have some involvement but no personal experience or knowledge who observe your "little angel" for a small amount of time and make snap judgements on what they see-- KNOW NOTHING -- HAVE NO CLUE -- AND PROBABLY WILL NEVER UNDERSTAND!
They see a person who seems to be relatively under control and manageable and cannot comprehend why caring for someone who has the stupid disorder is such a challenge
That's probably because they are not there when "IT" happens!
Well we just had our quota for awhile!We had a routine errand to run and everything went textbook till we hit the half way mark--Dak had gone with grandma into the Post Office. Somewhere something went terribly wrong. I have tried to cut the apron strings and allow him some independence so I was in the car all of a sudden I look up and Grandma is on the landing and Dakota has her in a head lock! Needless to say I jumped out and intervened--got them separated mostly with verbal cues. When Dak came down the stairs I directed him to the car. That's when it really went sideways--he got this dark look in his eyes and shook his head just slightly and headed down the street to the intersection00 which by the way is a major {3 lanes each way}intersection and it was at the height of the day -- extremely busy. Panic over came me but my internal dialogue said "OK" " think" "Keep cool" I thought in "dog Logic"
If I chase him the faster I go the faster he will go so I have to be calm and somewhat unresponsive to this behavior. He was fast approaching the signal and I was not sure he would stop or pay attention to the lights. I started to talk to him about the cars and the traffic and asked him to wait for me-- it wasn't too effective but I knew he was listening I just wasn't sure if he would in fact adhere to my request. He got to the corner and sorta stopped to survey the landscape and decide exactly where he was going to go ---about this time a guy on a bike was coming from behind him and I rose my voice and directed him to watch out for the bicycle---he reacted --I knew then he was at least responding to my statements . About that time the crosswalk signal went off and he bobbed toward the street but I redirected him to the cars that were turning and again he responded to my words. I was encouraged and gaining some confidence that I may be able to conquer this situation. He then made another gesture like he was going to cross the street and I knew there were approaching cars and he was too far away to grab him so I prepared myself to step out into the street in front of him --if necessary to avert the cars from hitting him. At the very moment for some reason he stopped and waited for me to get to the corner and actually took my hand and directed me around the corner. We continued around the corner and he escalated again and got me around the neck about half way back to the car. He asked me if I was OK and I told him I would be OK when he got over this and came back to me--- We spent a few more minutes going back and forth with this conversations and then as quick as "It" came-- "It" went!
We managed to get back in the car and complete the day without further incident. Once we were at home a little time came by and there was conversation about the incident Dakota emerged with a remorseful statement " I cant put my arm around grammys neck cuz I can hurt her!" It wasn't exactly an apology but it was awareness . It was conceptual thinking so you take it for what it is---the kind of apology Dakota was able to give. Another lesson learned; another tool in your tool belt!
Just hours before we had our "E ticket" ride I was talking to someone about how unpredictable this damn Autism is! That as a caregiver of someone you love, you want to celebrate success and acknowledge personal growth. You want to breathe just a little easier with each hour or day that goes by and you have had either a calm day or a day where you see some control or self monitoring.But it is the element of the unknown and unpredictable that slams you back to earth when you have one of those moments when "it" happens .
Most of all people who have some involvement but no personal experience or knowledge who observe your "little angel" for a small amount of time and make snap judgements on what they see-- KNOW NOTHING -- HAVE NO CLUE -- AND PROBABLY WILL NEVER UNDERSTAND!
They see a person who seems to be relatively under control and manageable and cannot comprehend why caring for someone who has the stupid disorder is such a challenge
That's probably because they are not there when "IT" happens!
Well we just had our quota for awhile!We had a routine errand to run and everything went textbook till we hit the half way mark--Dak had gone with grandma into the Post Office. Somewhere something went terribly wrong. I have tried to cut the apron strings and allow him some independence so I was in the car all of a sudden I look up and Grandma is on the landing and Dakota has her in a head lock! Needless to say I jumped out and intervened--got them separated mostly with verbal cues. When Dak came down the stairs I directed him to the car. That's when it really went sideways--he got this dark look in his eyes and shook his head just slightly and headed down the street to the intersection00 which by the way is a major {3 lanes each way}intersection and it was at the height of the day -- extremely busy. Panic over came me but my internal dialogue said "OK" " think" "Keep cool" I thought in "dog Logic"
If I chase him the faster I go the faster he will go so I have to be calm and somewhat unresponsive to this behavior. He was fast approaching the signal and I was not sure he would stop or pay attention to the lights. I started to talk to him about the cars and the traffic and asked him to wait for me-- it wasn't too effective but I knew he was listening I just wasn't sure if he would in fact adhere to my request. He got to the corner and sorta stopped to survey the landscape and decide exactly where he was going to go ---about this time a guy on a bike was coming from behind him and I rose my voice and directed him to watch out for the bicycle---he reacted --I knew then he was at least responding to my statements . About that time the crosswalk signal went off and he bobbed toward the street but I redirected him to the cars that were turning and again he responded to my words. I was encouraged and gaining some confidence that I may be able to conquer this situation. He then made another gesture like he was going to cross the street and I knew there were approaching cars and he was too far away to grab him so I prepared myself to step out into the street in front of him --if necessary to avert the cars from hitting him. At the very moment for some reason he stopped and waited for me to get to the corner and actually took my hand and directed me around the corner. We continued around the corner and he escalated again and got me around the neck about half way back to the car. He asked me if I was OK and I told him I would be OK when he got over this and came back to me--- We spent a few more minutes going back and forth with this conversations and then as quick as "It" came-- "It" went!
We managed to get back in the car and complete the day without further incident. Once we were at home a little time came by and there was conversation about the incident Dakota emerged with a remorseful statement " I cant put my arm around grammys neck cuz I can hurt her!" It wasn't exactly an apology but it was awareness . It was conceptual thinking so you take it for what it is---the kind of apology Dakota was able to give. Another lesson learned; another tool in your tool belt!
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