Where do I begin ?
I have such mixed emotions about this post -- One of my biggest pet-peeves are people who are judgemental -- I think that it comea with the territory --being a mom of an challenged child.
I am finding myself to be a bit judgemental in this case and it is eating at me. Let me explain.As i have written about this topic before there is so very little for our children once they exit high school. It is as if they have fallen off the radar.
There are several organizations and places who provide programs, work and social activities for the developmentally disabled; however this is a broad term which encompasses a wide array of challenges from downs syndrome to schitzophrenia --from autism to mental retardation and everything in between.
The quandary is this; in programs that are out there, I do not feel these are an appropriate placement for Dakota or most autistic individuals.
I guess this is where the Judgemental attitude slips in--- Look I know my son has significant challenges and definitely a need for adaptation in every phase of his life BUT it seems as if the mind-set of the public or even most of those who create and provide these programs is that every disabled child fits into their project. It is just not true. Our kids for the most part are square pegs and their programs are round holes!
I recognize my son is disabled and I love so many of the individuals who are in these programs but it is NOT where he belongs. Hence the hypocrisy!
Dakota just completed a 4 day work assessment at one of these programs.
4 different people working with him four different days and compiling a report of his ability.It was an interesting project and it will be helpful to have observations from people who are a blank slate when it comes to knowing Dakota. But I just cannot agree that this is the type of place he should be.
The program is trying to encourage myslef as well as Dakota to consider coming back and continuing.I appreciate the interest and enthusiasm. I appreciate what they do BUT I will not place Dakota in a "warehouse" away from the public eye with many people who are so much more severely impaired than he is for the rest of his days JUST BECAUSE others have decided that its OK for their kids.
So I press on -- we will be heading on to another assessment next month that is geared specifically to Autistic individuals.This will probably be a more complex picture of Dakotas abilities and shortcomings. This should allow us to create and mold work and social activities which will suit him better.
For now I struggle with my judgement and demons! And continue to look for the perfect mix of all things to make Dakotas stay on this earth one that will make him happy and content.
Sunday, February 22, 2009
Monday, February 16, 2009
What happens now?
If there's one piece of advice I could give someone starting out on this journey is never focus too hard on one task with our kids. Always give each accomplishment resounding accolades but know that as soon as they finish that there another one waiting around the corner.
Autism is not for sissy's---it is something that keeps coming and you have to be resilient; you cannot give up, let you guard down or wither away.First its early intervention and dealing with the diagnosis ,then its school districts, therapies and support, finally as all of that comes to an end you then have to formulate a plan for the rest of their lives. Whew
It wears me out just thinking about it. Well I am there and still at odds of exactly what to do.
The school district seems to be of the opinion that they have done everything they can and they gracefully give most of our kids a "Certificate of Completion" and send them on their way to spend the rest of their lives working in a warehouse, out of the public eye quietly tucked away doing piece work with many others who don't even have the same diagnosis, traits or behaviors. I know my job as a Mom is to also support and teach my son at home but it really chaps my hide when he can barely sign his name legibly, has not been mainstreamed properly to adjust him socially and is usually in a classroom that does its best to teach but has teachers that are constantly taken away from class for IEP's during class hours and training that should be done when it does not interfere with the little bit of teaching that is available to these kids.
Now the question that they pose is "what do you want him to do when he gets out of school?" They call this "transitioning" and it is supposed to start somewhere when the child is about 14 . Mostly the adults set "lofty " goals that are just something to write down to satisfy the IEP and even if you have serious requests or goals most of the time at the end of the year you don't see much in the way of progress. Or the teacher or class has no way of accommodating your request and it falls back on you.
Then when you get to the final year or so they start to pressure you. They are telling you that your child should work and that he needs to experience independence when in fact they dropped the ball on all of that years ago.
Look I am not trying to push it all off on the school district, I accept some of the responsibility but for years I have tried repeatedly to impress on them what needed to be done and it just wasn't. I mean when a typical set of parents send a typical child to school there is a typical expectation that when high school ends and they graduate that their child will be reasonably prepared to at least have a repertoire of abilities to perform in the community-- like getting a job or being able to have a bank account or possibly live on their own.That is NOT happening for most students in Special ed-- Not just Dakota.
So we delve into the next chapter---What comes next?
These children literally fall off the radar once they are out of school -- It is either function well enough for the "typical" community or resolve yourself to the world of the disabled--- There is no happy medium there is no compromise. Its very frustrating. Our kids are so unique they do not fit in either world . what happens is they usually end up going with "challenged " kids and people because there is so little accommodation for them in the "typical"community.
My personal goal is to create a compilation of experiences to mold to Dakotas needs. I really cant say I know what he wants but I know what he responds to and what he succeeds at so these are the guides I will use.
What I am doing is exploring volunteering opportunities form a number of reasons but mostly because it is something that allows Dakota to get out in to the "regular" community. It is very rare that you will be turned down when you volunteer and there is always something your child can do. Additionally I am trying to tap into the local parks and recreation for classes that can be enjoyed by all people like an exercise class or a planned community field trip. And because all he had known since he was 3 is school we are going to add in some potential classes at a local junior college to establish continuity. Top it off with our own trips to the beach. the mountains or to Hollywood and I think we have got a relative plan.
Coming full circle to the beginning of this excerpt I never imagined that when Dakota started school that I would be faced with these types of decisions this far down the road. There are many kids that seem to respond to certain treatments and have managed to blend but there are many more who are just like Dakota who have wonderful qualities and abilities but mainstream America does not know how to accept it or embrace it So its our job to figure it out ---
Figure out "What Happens Next?????"
Autism is not for sissy's---it is something that keeps coming and you have to be resilient; you cannot give up, let you guard down or wither away.First its early intervention and dealing with the diagnosis ,then its school districts, therapies and support, finally as all of that comes to an end you then have to formulate a plan for the rest of their lives. Whew
It wears me out just thinking about it. Well I am there and still at odds of exactly what to do.
The school district seems to be of the opinion that they have done everything they can and they gracefully give most of our kids a "Certificate of Completion" and send them on their way to spend the rest of their lives working in a warehouse, out of the public eye quietly tucked away doing piece work with many others who don't even have the same diagnosis, traits or behaviors. I know my job as a Mom is to also support and teach my son at home but it really chaps my hide when he can barely sign his name legibly, has not been mainstreamed properly to adjust him socially and is usually in a classroom that does its best to teach but has teachers that are constantly taken away from class for IEP's during class hours and training that should be done when it does not interfere with the little bit of teaching that is available to these kids.
Now the question that they pose is "what do you want him to do when he gets out of school?" They call this "transitioning" and it is supposed to start somewhere when the child is about 14 . Mostly the adults set "lofty " goals that are just something to write down to satisfy the IEP and even if you have serious requests or goals most of the time at the end of the year you don't see much in the way of progress. Or the teacher or class has no way of accommodating your request and it falls back on you.
Then when you get to the final year or so they start to pressure you. They are telling you that your child should work and that he needs to experience independence when in fact they dropped the ball on all of that years ago.
Look I am not trying to push it all off on the school district, I accept some of the responsibility but for years I have tried repeatedly to impress on them what needed to be done and it just wasn't. I mean when a typical set of parents send a typical child to school there is a typical expectation that when high school ends and they graduate that their child will be reasonably prepared to at least have a repertoire of abilities to perform in the community-- like getting a job or being able to have a bank account or possibly live on their own.That is NOT happening for most students in Special ed-- Not just Dakota.
So we delve into the next chapter---What comes next?
These children literally fall off the radar once they are out of school -- It is either function well enough for the "typical" community or resolve yourself to the world of the disabled--- There is no happy medium there is no compromise. Its very frustrating. Our kids are so unique they do not fit in either world . what happens is they usually end up going with "challenged " kids and people because there is so little accommodation for them in the "typical"community.
My personal goal is to create a compilation of experiences to mold to Dakotas needs. I really cant say I know what he wants but I know what he responds to and what he succeeds at so these are the guides I will use.
What I am doing is exploring volunteering opportunities form a number of reasons but mostly because it is something that allows Dakota to get out in to the "regular" community. It is very rare that you will be turned down when you volunteer and there is always something your child can do. Additionally I am trying to tap into the local parks and recreation for classes that can be enjoyed by all people like an exercise class or a planned community field trip. And because all he had known since he was 3 is school we are going to add in some potential classes at a local junior college to establish continuity. Top it off with our own trips to the beach. the mountains or to Hollywood and I think we have got a relative plan.
Coming full circle to the beginning of this excerpt I never imagined that when Dakota started school that I would be faced with these types of decisions this far down the road. There are many kids that seem to respond to certain treatments and have managed to blend but there are many more who are just like Dakota who have wonderful qualities and abilities but mainstream America does not know how to accept it or embrace it So its our job to figure it out ---
Figure out "What Happens Next?????"
Sunday, February 1, 2009
Web Group Support
It occurred to me that I have never talked about support that can be found online---I would suppose that anyone who is reading this BLOG is well aware of the Internet however I wanted to "steer" anyone who might be seeking support in the direction for help.
When I started this journey I was pretty much skeptical and not interested in being a part of a support group. I felt that I had enough on my plate and I did not need to invest the time to what I perceived as "drivel". There was a support group for everything --and why would I want to waste my time?
My very first night I participated in a support group there was a family that spoke of the "trials" they were going thru with their son---They has to turn off their water at night and lock the refrigerator because their Autistic son would get up in the middle of the night and "try to" pack his fathers lunch and had most everything in the refrigerator strung all over the kitchen and when he was bored with that he would take a glass and fling water all over to watch how the droplets of water reflected thru the kitchen light---After hearing that I was not only thankful for what I was going thru but also realized exactly why I needed to attend this support group.
This group was thru a program that Dakota attended and while they worked with him ; I attended the group. Eventually Dakota had completed the program and that meant I no longer would be able to attend this group.That is when I went locking on the Internet for web groups-- and I have fond several that I participate in.
Rather than list those groups I use; I will say that you can go to any ISP like Yahoo, AOL, Msn, etc. main page and look for web groups under health and usually you will find corresponding items that match.{also you can google or Keyword search}
I am sure there are many out there who don't have the time,interest or energy for a group but I will encourage you to consider "bonding" with someone who has walked in similar shoes-- Many of us are mourning or in denial and when you touch others who are experiencing the same or similar things;it really helps-- it really does
There are also groups that you can physically attend and many find those more satisfying. The only down side is that you have to set aside time to get ready and go to the meeting places ---at least on time it can be at your convenience and on your time schedule.
When I started this journey I was pretty much skeptical and not interested in being a part of a support group. I felt that I had enough on my plate and I did not need to invest the time to what I perceived as "drivel". There was a support group for everything --and why would I want to waste my time?
My very first night I participated in a support group there was a family that spoke of the "trials" they were going thru with their son---They has to turn off their water at night and lock the refrigerator because their Autistic son would get up in the middle of the night and "try to" pack his fathers lunch and had most everything in the refrigerator strung all over the kitchen and when he was bored with that he would take a glass and fling water all over to watch how the droplets of water reflected thru the kitchen light---After hearing that I was not only thankful for what I was going thru but also realized exactly why I needed to attend this support group.
This group was thru a program that Dakota attended and while they worked with him ; I attended the group. Eventually Dakota had completed the program and that meant I no longer would be able to attend this group.That is when I went locking on the Internet for web groups-- and I have fond several that I participate in.
Rather than list those groups I use; I will say that you can go to any ISP like Yahoo, AOL, Msn, etc. main page and look for web groups under health and usually you will find corresponding items that match.{also you can google or Keyword search}
I am sure there are many out there who don't have the time,interest or energy for a group but I will encourage you to consider "bonding" with someone who has walked in similar shoes-- Many of us are mourning or in denial and when you touch others who are experiencing the same or similar things;it really helps-- it really does
There are also groups that you can physically attend and many find those more satisfying. The only down side is that you have to set aside time to get ready and go to the meeting places ---at least on time it can be at your convenience and on your time schedule.
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