There isn't a day... or a night that does not go by that I dont think about Dakota's future, Once I am no longer here to orchestrate it...I also know that I am NOT the only one who has or will struggle with this issue.
Again and not to sound like a broken record BUT I know that Dakota has so much to offer as long as there is someone who will take the time to recognize it and my greatest fear is that he will just be medicated and left to "rot in a corner" because there will be NO ONE who will have any special tie to him...He is after all a person with no relatives and will be at the mercy of caregivers. As much as I like to believe its all good out there and there are loving and caring people who will surround him ; the pessimistic side of me thinks differently. How can you invest your whole life to providing a qualtiy of life for a child, a person your created only to know that when you are gone,not only do you not have any control over it but worse that your biggest fear has come to fruition.
You can plan and plot and pick people to carry on but again how do you know that it will all work out?????? YOU CANT. So I guess this has to come to a poit where you have to LET IT BE.
One of the Moms I met years ago, who is also one of my biggest teacher/mentors said that she had come to the conclusion that as long as her son ot his basic needs met even if it was by a stranger she thinks he will never even miss her.. I have to hope that maybe she is right . But when you have a kid that wants and expects you to lay down with him every night so he can go to sleep -----who will be there to do that for him???? N O O N E .
My heart aches to think how radically his life will change when I am no longer here to arrange, fix and provide. He has enough to deal with just with the disorder .....
Unfortunately I have no real answer of solution...Many I have met and discussed this with have lots of different views but none of us have a solution. I sit here and cry as I write this because it is truly helplessness ...
We as parents and caregivers have to do the best we can to "road map" our kids and their routines, schedules wants, needs and preferences and put our trust in those that come after us to love our kids enough to make their life as pleasant as possible .
One thing I have done is to start documanting as much as I can about our daily lives in a binder and also files in the computer so at least there is a working template of where to begin and finally we have to season it with a big dash of faith . Faith that our wishes and our childs life wont be anymore difficult that it has to be.
Wednesday, August 15, 2012
Friday, August 3, 2012
The Yin and Yang of Autism
Today a mom posted that she was at an "attraction park" and her child had trouble understanding how the showtimes worked and before she knew it he had eloped and was at the car banging on the window to get in -- CUZ in his mind it was time to go --- I cannot tell you how many times I have had this experience. For those of you with typical kids you get a cranky one or one that decides to take off on you or even one that whines for candy or a balloon ..but I dont think you could even imagine how these types of behaviors just HALT EVERYTHING. Its just the end . You just need to gather your marbles and go home. Some would say "Oh I would never allow a child to dictate my day that way " all I gotta say is walk a mile in anyone of our "Autism Shoes" then tell me what you say !
I have bought tickets to the Prom, admission to a Haunted House, the Grammy Museum,oh the list goes on and in each of these cases Dak never made it...wasted money??? some would say . What I say is all I can do is present the opportunity and hope he takes it. You run the gammit of emotions your are upset that the money is spent , your are sad cuz your kid is loosing out on an event ,you are disgusted and think you will never do it again then you get some time in thought and you become melencholy and decide that it is better to try and fail than to never have tried........
I have said this over and over that I only know what works in our house and for the most part my main goal is to allow Dak to pretty much do what keeps him happy...He already deals with a horrible disorder that turns his thoughts into raging crap so why complicate his life and put him thru any more stress. I know that does not prepare him for the world but I dont think any of us were prepared for Autism .
I think the most frustrating thing is when you have those Ah-Ha moments or what I call shoulda had a V-8 moment when you see a sparkling ray of brillance come from your child. In that moment you know that he is lost in this world and the world is loosing out on his brillance. Mainly because people will not sit still long enough to notice when things like that occur. Or they are so wrapped up in their own world that they just do not notice because they have effectively tuned him out. Surely a kid like Dakota couldnt have anything worthwhile to contribute. {That is for any child with Autism not just Dakota} I have seen it happen even when people dont mean to do it...Its very odd to be in that situation .
Never the less you, as a parent struggle with what to do and how to handle incidents like this and you get very frustrated , depressed and even start believing that things will never change and you will never see an improvement . THEN a lightening bolt hits
The most recent case with us; I had just finised balling my eyes out the day before because Dakota has just been having some tumultous days. I have been trying everything to get him to get out to walk in the park or the track, to play a board game , to read just anything and I was being met with some pretty agressive behaviors and it has been tearing me down. So yesterday they start talking about a Who Concert that was cancelled and tickets were issued for December 17,1979 {mind you he was not even born yet} and he looks at me with a deadpan face and says " that was on a Monday" and "Chritmas Eve was on a Monday that year too! "Now mind you this is a kid who has trouble counting change and I knew better than to call him on it...But of course I grabbed his iPad Calendar and sure enough it was a Monday . I swear it just about took me to the floor. I dont get it, I dont know how he does it but more importantly no one has ever taken notice ... I realize it is a fleeting skill but it is enough to encourage me to NEVER GIVE UP .... Because I know its in there . and I just need to keep coaxing it out. Because this is the Yin and Yang of Autism.
I have bought tickets to the Prom, admission to a Haunted House, the Grammy Museum,oh the list goes on and in each of these cases Dak never made it...wasted money??? some would say . What I say is all I can do is present the opportunity and hope he takes it. You run the gammit of emotions your are upset that the money is spent , your are sad cuz your kid is loosing out on an event ,you are disgusted and think you will never do it again then you get some time in thought and you become melencholy and decide that it is better to try and fail than to never have tried........
I have said this over and over that I only know what works in our house and for the most part my main goal is to allow Dak to pretty much do what keeps him happy...He already deals with a horrible disorder that turns his thoughts into raging crap so why complicate his life and put him thru any more stress. I know that does not prepare him for the world but I dont think any of us were prepared for Autism .
I think the most frustrating thing is when you have those Ah-Ha moments or what I call shoulda had a V-8 moment when you see a sparkling ray of brillance come from your child. In that moment you know that he is lost in this world and the world is loosing out on his brillance. Mainly because people will not sit still long enough to notice when things like that occur. Or they are so wrapped up in their own world that they just do not notice because they have effectively tuned him out. Surely a kid like Dakota couldnt have anything worthwhile to contribute. {That is for any child with Autism not just Dakota} I have seen it happen even when people dont mean to do it...Its very odd to be in that situation .
Never the less you, as a parent struggle with what to do and how to handle incidents like this and you get very frustrated , depressed and even start believing that things will never change and you will never see an improvement . THEN a lightening bolt hits
The most recent case with us; I had just finised balling my eyes out the day before because Dakota has just been having some tumultous days. I have been trying everything to get him to get out to walk in the park or the track, to play a board game , to read just anything and I was being met with some pretty agressive behaviors and it has been tearing me down. So yesterday they start talking about a Who Concert that was cancelled and tickets were issued for December 17,1979 {mind you he was not even born yet} and he looks at me with a deadpan face and says " that was on a Monday" and "Chritmas Eve was on a Monday that year too! "Now mind you this is a kid who has trouble counting change and I knew better than to call him on it...But of course I grabbed his iPad Calendar and sure enough it was a Monday . I swear it just about took me to the floor. I dont get it, I dont know how he does it but more importantly no one has ever taken notice ... I realize it is a fleeting skill but it is enough to encourage me to NEVER GIVE UP .... Because I know its in there . and I just need to keep coaxing it out. Because this is the Yin and Yang of Autism.
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