I have been struggling ...
trying to get back into a groove with posting on the BLOG .. So many factors BUT really no excuses - Just circumstances... After coming back from the Disneyland Birthday have had a few weeks of trying situations.
Dynamics of the house and Dakota's routine have been jumbled...He usually spends time with his Pop once a week and lately he has been resistant.. The strange thing is I am seeing this also occur in others functions that are normally no problem. For instance I took him to get his hair cut and he refused to get out of the car. VERY STRANGE. Dakota has always presented challenges in certain situations and I have always chalked it off to his way I saying " I just don't want to do it". However I find myself over and over again analyzing the action wondering if it is more, if it is a deliberate change in routine or even worse and God Forbid an eruption of more severe issues...Like the thing about him refusing to get out of the car I am wondering if it is not a glimmer of 'AGORAPHOBIA"..Then I say to myself "Oh Stop It " you are trying to make it worse than it already is.
Never the less why I titled this Tired is because I have been feeling very tired . Just finding reasons to do things the easy way and skip things that are part of normal everyday life and after a few weeks of this I came to realize that I am not physically tired It is all mental.hahahaha
I mean there are a few lags here and there but it is all the crap that swirls around in your head that just exhausts me...I was thinking its just me getting old, or I have done my fair share for the day BUT NO its not that at all the feeling of being physically tired is directly from the mental gymnastics.
I do not want this it sound like I am whining but parents of "typical" kids just DO NOT KNOW HOW FORTUNATE they are ..The simple fact that those kids get up in the morning and barring bullying, fighting with sibs or other obstacles in the day they can successful get through a day with out assistance from their parents ... From the moment our kids wake up until they lay their heads down at night it is a marathon... AND YOU CANNOT "SCRATCH THE RACE" ..I wore a pedometer for about a week recently and I averaged 10,000 steps without breaking a sweat ...AND that was just around the house trying to accommodate my sons needs for the day-- and I am still fat!!! Hows does that work?
Think the whole point of this post is this... You work and work at caring for your child Everyday can be a new challenges or it can be a day of rigidity and sameness and what transpires is an all out effort to just make the day a little better and a little easier to accept for our kids and when the day is done you have had it You are TIRED ...BUT usually more mentally tired than physically . Bottom line is this you cant give up , and for the most part you are alone and often times wondering how its all going to end up BUT you will never step off the "Hamster Wheel" .
Monday, October 15, 2012
Sunday, September 30, 2012
Disney Birthday Extravaganza
Well its been almost a month since I lasted posted and any guesses as to why??? Perhaps a certain someone had a Birthday Celebration!!!!
Yes indeedy we spent the better part of a week at the Disneyland Hotel with all the trimmings- including a a room on the top floor where we could sit out on the patio and watch the fireworks every night, a dinner at Gooys Kitchen with his friends, a day at both the parks with friends who spent the night after Goofys Kitchen and LOOK AT THAT CAKE???? In honor of CarsLand he had a full blown replica of Lightening Mc Queen driving thru Radiator Springs with the Cozy Cone Motel to boot.{ I have to admit I did think of Madonnas CONE boobs from years ago but decided that it was still OK since he is an adult now anyway!!!!!}
We had a great time and really only had one "glitch" { behavior} of any significance SO I call that SUCCESS!
I know it seems like a lot and many would say too much .... Here's how I see it..
First and foremost Dakota has enough crap to go thru everyday of his life and if this gives him joy and maybe allows him to be "normal" for even one minute or hour its all worth it...
Secondly this kid does not ask me for Nikes or Air Jordan's, iPods, iPads, any type of clothing, to go to sporting events or concerts{ although he likes them,he doesn't ask for money for movies or cars or booze ----He loves still being around me , he doesn't break curfew.he doesn't go out and get in trouble , he doesn't wear his pants around his knees and he hasn't brought home a girl pregnant ... So how tough is life with him????I think sometimes I am blessed to have the kid I have instead of a typical one . Don't get me wrong I long for Dakota to be able to do all the other things BUT sometimes we just have to realize that things are the way they are and instead of whining about it just get up and get on with it>>>.
ALL IN ALL A GREAT TIME WAS HAD BY ALL ... SAVE THE DATE CUZ i AM SURE WE WILL BE DOING IT AGAIN!
Thursday, September 6, 2012
FYI
Just an FYI if you ever want to find a particualr subject use the little "search" strip directly to the right.. for instance type in Silent Segregation and hit enter and all the posts will pop up... I know most of you are computer literate but this is for those who are not!
Wednesday, September 5, 2012
Rant about Silent Segregation!
After the recent events reported about the American Airlines Pilot refusing passage to a Mom and a 16 year old Downs syndrome boy I had to prepost my rant about the Silent Segreagtion.... I dont expect everyone to totally embrace my son and his disability I simply want to be treated as others are! I witnessed so much discrimination and segregation eve now 50 years after the Civil Rights act is law it just saddens me--- I hold no specific person accountable ACCEPT for everuone TAKING A MINUTE TO THINK HOW THEY WANT TO BE TREATED AND EXTEND THAT SAME IDEA TO MY SON AND MYSELF. There is another post back a ways titled Silent Segreation but for now this was a FB posting in reaction to this last fiasco ....
Oh Kristie I cannot believe this BUT I have to say I have written about this on my BLOG about most especially in schools and the school system how its like the Civil Rights act never was adopted--- I call it the "Silent Segregation" and it speaks to how our special needs kids clasrooms are always the "portables" and always in the back of the school segregated from the other classes and kids-- BUT even more so the TEACHERS who should realize that they are role models for their "typical" children will allow OUR kids to walk right by them and the TEACHERS totally ignore them just like the children--- Dont they know that they have little minds that they can change or at least mold BY setting the example to include and acknowledge our children even when they walk by a class or classroom of typical peers??? I want to give them {teachers} the benefit of the doubt and hope they are just wrapped up in their own day BUT I can tell you I witnessed it over and over for years and it breaks my heart that one little jesture by saying Hello there _____ how ya doin? And all those kids in that class see that their teacher speaks to them{our Kids} maybe they will do the same... One last gripe ---- I have even seen how special Ed teachers are shunned by other teachers and thats just as bad... WE ARE STILL IN THE BACK OF THE BUS AND ITS TIME FOR US TO MOVE UP TO THE GROUP...We dont need to be in the front just in the middle with everyone else.
Oh Kristie I cannot believe this BUT I have to say I have written about this on my BLOG about most especially in schools and the school system how its like the Civil Rights act never was adopted--- I call it the "Silent Segregation" and it speaks to how our special needs kids clasrooms are always the "portables" and always in the back of the school segregated from the other classes and kids-- BUT even more so the TEACHERS who should realize that they are role models for their "typical" children will allow OUR kids to walk right by them and the TEACHERS totally ignore them just like the children--- Dont they know that they have little minds that they can change or at least mold BY setting the example to include and acknowledge our children even when they walk by a class or classroom of typical peers??? I want to give them {teachers} the benefit of the doubt and hope they are just wrapped up in their own day BUT I can tell you I witnessed it over and over for years and it breaks my heart that one little jesture by saying Hello there _____ how ya doin? And all those kids in that class see that their teacher speaks to them{our Kids} maybe they will do the same... One last gripe ---- I have even seen how special Ed teachers are shunned by other teachers and thats just as bad... WE ARE STILL IN THE BACK OF THE BUS AND ITS TIME FOR US TO MOVE UP TO THE GROUP...We dont need to be in the front just in the middle with everyone else.
Wednesday, August 15, 2012
A Big Dash of FAITH
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.
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.
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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