Hey Dakota just completed a short dance class called
"Get up and Move" sponsored through the Autism Society with instructor Lee Arvinger.
I just posted her web site on the bottom of the Blog. She is absolutely a gem! I cannot tell you how in tune she is with our kids and how well she adapts the program for the students she has---
and what great attitude!
I cannot give her enough accolades!
I hope after the first of the year we can get into another one of her classes.
Just wanted to give her a shout out!
Thursday, December 2, 2010
Sunday, November 21, 2010
Parenthood--Nov 9th episode
So we are TV-O-holics around our house and its actually a subject that deserves its own excerpt but this BLOG is specifically about the content of Parenthood {Channel 4 on Tuesday 10 pm-Pacific Time}
Several parents who live with Autism have commented that it is too difficult to watch sometimes--
this is because it hits too close to home-- Too honest too real. I concur.However its is also the reason why I don't miss an episode. I don't think I ever come away from it without thinking to myself that I could not have said it better.
The premise of the show is a boatload of family with several story lines and multiple characters BUT one family has a son who is diagnosed with Aspbergers- a "high functioning" form of Autism.
This particular episode deals with a trip to the store where Max{the child with Aspergers}recognizes that the man in front of them has 17 items and it is in line at the "Express Lane" "10 items or less". Max resorts to "self help" by reaching in to the mans cart and removing enough items to adhere to the "rules"all the time saying 10 items or less you have 17. The man gets mad and a confrontation ensues. Words are exchanged, Max's Father has Granddad take Max back to the store to retreive another item and all of a sudden the man calls Max a "retard" and Dad hauls off and slugs the guy. Dad knows what he did is wrong and its not his nature but never-the-less "its done> By the end of the program Max's father is brooding and Mom approaches him with "Whats Wrong?" {she doesn't know that any of this happened --Dad has kept it from her}He finally admits to what happened and that although he knows its wrong and its not his nature to do something like that ---- That IT FELT GOOD-- and that he was angry and it was OK to be angry cuz people just don't get it.
OK I wont go into anymore detail about the episode but I have to embellish on what the writers "captured"
The frustration and anger.They were so eloquent in describing not only the feelings but actions. Its not OK to lash out and Its not OK to invade other peoples space but sometimes its so overwhelming the "primal" feelings surface. When you have a child with Autism it is as if the whole family is "broken". I know there are others who have different challenges and Autism isn't anymore important. Just about everyone has "stuff" to deal with and those who don't are very lucky. When a child has Autism its ratcheted up because there's a whole person with a mental disorder NoOne seems to recognize, identify, understand or tolerate. People only see an individual who is "acting" out of the norm. Human Nature very rarely allows most people to empathize with an Autistics behavior AND its devastating for the parents.
When you continue to see such intolerance in the world about ANYTHING it grabs you to the core. The only thing that generates in your soul is "What will happen to my child once I am gone??? Who will be able to not only tolerate but understand his behavior?> Who will make sure that MY CHILD will be taken care of the way he deserves? Who will speak for him? Who will make sure that he is treated with dignity and respect? who will give him the ability to live like anyone else? and the questions go on----
This is what generates the anger -- some would say the "loss of control" I would say is the mis-trust of others who behave badly when others are not watching them.
Ironic that our children are judged on their inappropriate behavior yet typical people behave badly all the time and it is tolerated.Only because typical people will cover-up, apologize, grovel or repent for their mistakes and our kids don't have that filter.
Well once again I have climbed up on the "soapbox"
I hope that I was able to reach even one person and change their perspective.
Afteralll that's what this BLOG is about!
Several parents who live with Autism have commented that it is too difficult to watch sometimes--
this is because it hits too close to home-- Too honest too real. I concur.However its is also the reason why I don't miss an episode. I don't think I ever come away from it without thinking to myself that I could not have said it better.
The premise of the show is a boatload of family with several story lines and multiple characters BUT one family has a son who is diagnosed with Aspbergers- a "high functioning" form of Autism.
This particular episode deals with a trip to the store where Max{the child with Aspergers}recognizes that the man in front of them has 17 items and it is in line at the "Express Lane" "10 items or less". Max resorts to "self help" by reaching in to the mans cart and removing enough items to adhere to the "rules"all the time saying 10 items or less you have 17. The man gets mad and a confrontation ensues. Words are exchanged, Max's Father has Granddad take Max back to the store to retreive another item and all of a sudden the man calls Max a "retard" and Dad hauls off and slugs the guy. Dad knows what he did is wrong and its not his nature but never-the-less "its done> By the end of the program Max's father is brooding and Mom approaches him with "Whats Wrong?" {she doesn't know that any of this happened --Dad has kept it from her}He finally admits to what happened and that although he knows its wrong and its not his nature to do something like that ---- That IT FELT GOOD-- and that he was angry and it was OK to be angry cuz people just don't get it.
OK I wont go into anymore detail about the episode but I have to embellish on what the writers "captured"
The frustration and anger.They were so eloquent in describing not only the feelings but actions. Its not OK to lash out and Its not OK to invade other peoples space but sometimes its so overwhelming the "primal" feelings surface. When you have a child with Autism it is as if the whole family is "broken". I know there are others who have different challenges and Autism isn't anymore important. Just about everyone has "stuff" to deal with and those who don't are very lucky. When a child has Autism its ratcheted up because there's a whole person with a mental disorder NoOne seems to recognize, identify, understand or tolerate. People only see an individual who is "acting" out of the norm. Human Nature very rarely allows most people to empathize with an Autistics behavior AND its devastating for the parents.
When you continue to see such intolerance in the world about ANYTHING it grabs you to the core. The only thing that generates in your soul is "What will happen to my child once I am gone??? Who will be able to not only tolerate but understand his behavior?> Who will make sure that MY CHILD will be taken care of the way he deserves? Who will speak for him? Who will make sure that he is treated with dignity and respect? who will give him the ability to live like anyone else? and the questions go on----
This is what generates the anger -- some would say the "loss of control" I would say is the mis-trust of others who behave badly when others are not watching them.
Ironic that our children are judged on their inappropriate behavior yet typical people behave badly all the time and it is tolerated.Only because typical people will cover-up, apologize, grovel or repent for their mistakes and our kids don't have that filter.
Well once again I have climbed up on the "soapbox"
I hope that I was able to reach even one person and change their perspective.
Afteralll that's what this BLOG is about!
Sunday, October 31, 2010
SATURDAYS!!!!!!!!
OH My GOD! I am about at the end of my rope on this one!
For almost a Year I have seen different and escalated behaviorand I cannot de-code it! I have consulted with doctors and other professionals worked with Dakota, the family and Friends and I just cant figure it all out.
Some of the issues I have had some enlightenment but SATURDAYS have been especially difficult.
It is a transitional day for Dakota and I understand that any time you have transition there will be challenges. Saturdays are just "KICKING my BUTT"
I have tried every trick in my "tool belt" and I just cannot "slay this Dragon"
This most frustrating point is that Dakota is verbal and somewhat in touch with his feelings wants and needs yet he finds it incredibily diffeicult to EXPREES them! When givien choices instead of saying what he wants to do he revs like an engine "tac-ing " at thousands of RPM's. It seems like his brain goes off the deep end when he has to say or choose ANYTHING. And on Saturdays this intensifies 10 fold. He has resorted to self injorious behavior slapping his face and profuse crying.He also displays aggression by growling and TRYING to be physical!
I am so exhausted depressed frustrated and perplexed. I feel bad that he has to go thru this and I am overwhelmed with what to do. I was just getting to the point where I thought I had a pretty good handle on things and that I had pretty much seen it all BUT NOOOOOOOOOOO here's another one.
Sometimes I just don't understand why these kids have to go thru what they do but if I had all the answers then I would be golden.
I will continue to try to de-code whats happening on SATURDAYS but for now it is my mystery!
For almost a Year I have seen different and escalated behaviorand I cannot de-code it! I have consulted with doctors and other professionals worked with Dakota, the family and Friends and I just cant figure it all out.
Some of the issues I have had some enlightenment but SATURDAYS have been especially difficult.
It is a transitional day for Dakota and I understand that any time you have transition there will be challenges. Saturdays are just "KICKING my BUTT"
I have tried every trick in my "tool belt" and I just cannot "slay this Dragon"
This most frustrating point is that Dakota is verbal and somewhat in touch with his feelings wants and needs yet he finds it incredibily diffeicult to EXPREES them! When givien choices instead of saying what he wants to do he revs like an engine "tac-ing " at thousands of RPM's. It seems like his brain goes off the deep end when he has to say or choose ANYTHING. And on Saturdays this intensifies 10 fold. He has resorted to self injorious behavior slapping his face and profuse crying.He also displays aggression by growling and TRYING to be physical!
I am so exhausted depressed frustrated and perplexed. I feel bad that he has to go thru this and I am overwhelmed with what to do. I was just getting to the point where I thought I had a pretty good handle on things and that I had pretty much seen it all BUT NOOOOOOOOOOO here's another one.
Sometimes I just don't understand why these kids have to go thru what they do but if I had all the answers then I would be golden.
I will continue to try to de-code whats happening on SATURDAYS but for now it is my mystery!
Saturday, October 23, 2010
It is what it is!!!!!
I was recently writing to another parent and discovered that I had another "rant" to publish. Don't let the word "rant:" put you off its just my way of identifying issues that I feel can be common to many of us who care for individuals with Autism. While I work through the behavior I develop observations and opinions I hope might help someone else who has reached a point where they feel helpless or distraught because they just cannot figure out what to do next!
And so it goes:
I read an article several years ago by a very high functioning Autistic girl who was angry with her parents for continuing to "rid" her of her Autism. They had taken her to many doctors and tried chelation, diets and other behavioral strategies --all to make her better . Her opinion was that as she has gotten older she resented her parents trying to make her something she IS NOT! Her article went on to say that she felt betrayed and that Autism was a part of who she was and when others even your parents try to change that, they are changing the person. She did not necessarily like all the things that came with Autism but it was a part of her and she wanted to remain true to herself. This was an epifamy for me.
As the last 4 or 5 years have come to pass her words ring true to our situation more and more. When you have a baby and then a child you do everything in your power to protect ,provide and guide for their best interest. But as our kids develop in to adolescence and adulthood we have to realize that they are humans first. Meaning that regardless of the Autism they still have wants needs and desires like ANYONE ELSE. -They have their own personality traits and WE HAVE TO HONOR THAT .
I was recently telling another Mom that after 23 years I have arrived at a different point than those who have younger kids. Not so much "been there done that:" but more "Why bang my head against a cement wall?"
The observation was this----Dakota has things he likes. Maybe I don't like them . He is 24. Almost every parent on earth has an adult child that they don't like or agree with what their child has done or is going to do. Yes hes not typical and that does have some bearing on the process but essentially he has a right to do and feel what he wants. I see where his "disability" limits him and I try to enhance those parts of his life.
He needs exposure to community and as much social interaction as I can produce for him and he will accept BUT I can only present the opportunity to him and it HAS TO BE his choice whether he engages or not. If nothing else, 23 years has given me this little "pearl of wisdom". I want Dakota to be the best he can be but I realize that at this point its more aggravation for me than it is for him.
Its not giving up its recognizing that Dakota is who he is and likes what he likes and does what he wants to do and I have to accept that his him and his personality.Sometimes I find that incredibility hard -- and it is not anything I think anyone can relate too just where I have landed after 23 years.
All I can say is if you are experiencing anything like this --Just do the best you can do Relax and don't have a coronary over it --- Because It Is What It Is!
And so it goes:
I read an article several years ago by a very high functioning Autistic girl who was angry with her parents for continuing to "rid" her of her Autism. They had taken her to many doctors and tried chelation, diets and other behavioral strategies --all to make her better . Her opinion was that as she has gotten older she resented her parents trying to make her something she IS NOT! Her article went on to say that she felt betrayed and that Autism was a part of who she was and when others even your parents try to change that, they are changing the person. She did not necessarily like all the things that came with Autism but it was a part of her and she wanted to remain true to herself. This was an epifamy for me.
As the last 4 or 5 years have come to pass her words ring true to our situation more and more. When you have a baby and then a child you do everything in your power to protect ,provide and guide for their best interest. But as our kids develop in to adolescence and adulthood we have to realize that they are humans first. Meaning that regardless of the Autism they still have wants needs and desires like ANYONE ELSE. -They have their own personality traits and WE HAVE TO HONOR THAT .
I was recently telling another Mom that after 23 years I have arrived at a different point than those who have younger kids. Not so much "been there done that:" but more "Why bang my head against a cement wall?"
The observation was this----Dakota has things he likes. Maybe I don't like them . He is 24. Almost every parent on earth has an adult child that they don't like or agree with what their child has done or is going to do. Yes hes not typical and that does have some bearing on the process but essentially he has a right to do and feel what he wants. I see where his "disability" limits him and I try to enhance those parts of his life.
He needs exposure to community and as much social interaction as I can produce for him and he will accept BUT I can only present the opportunity to him and it HAS TO BE his choice whether he engages or not. If nothing else, 23 years has given me this little "pearl of wisdom". I want Dakota to be the best he can be but I realize that at this point its more aggravation for me than it is for him.
Its not giving up its recognizing that Dakota is who he is and likes what he likes and does what he wants to do and I have to accept that his him and his personality.Sometimes I find that incredibility hard -- and it is not anything I think anyone can relate too just where I have landed after 23 years.
All I can say is if you are experiencing anything like this --Just do the best you can do Relax and don't have a coronary over it --- Because It Is What It Is!
Saturday, October 2, 2010
Reflection
My Boy
I was writing a friend today and realized that almost all of my blog is about challenges, trials and tribulations. In that moment; I realized the real reason why I started writing it in the first place. Surely my intentions were to help anyone who was feeling lost or overwhelmed about all the crazy places AUTISM takes, you but more so its about how much it is soooooooo worth it!
Dakota is such an amazing kid in his own right and so many times I feel that he is not given a chance simply because people either don't understand but more importantly wont take the time to understand.
He has had more than his fair share of obstacles-- BUT the one thing that came through right away was what a beautiful child he was! EVERYWHERE I took him people would always remark about what an angel he was--- I was never one who oogled of babies and I thought of course my child was cute but I was always amazed at how many people approached me about Dakota.
It wasn't long that the AUTISM started creeping into Dakotas life but it was all OK while he was small and cute --- he could blend --- then puberty and middle school came and it was a nightmare--- What Has Happened???Why don't these people see the same kid they did a year or two ago???Why would they give him a chance-- He was getting taller and heavier and a force to be reckoned with--All of a sudden all those people were intimidated afraid or wanting to "whip his behaviors into shape!"
Now that he has become a young man the challenges are different yet similar. There are no supports or protection under the law anymore---He is just out there and so little interest not only for him but for all the others who will be here at this point soon,too!
No where to go, No options to find people who will mentor or buddy with these kids whose greatest deficit is social interaction with Typical People. Its not that the parent cannot provide these interactions for their kids, its more about the fact that our kids need connections with others that ARE NOT FAMILY. They need people who understand them and are willing to accept their behavior and still be there for them. Someone who can give a small amount of time and be there as an extension of their family. Someone who is not afraid and someone who is willing to take time to educate themselves to be able to provide a friendship that WONT GO AWAY just because they act out. In this litigious society there's always the fear too that even tho there is no intent our kids could lash out and potentially hurt someone resulting in a law suit--- Its a scary thing!
My Boy is such an amazing creature and I love him so much-- He has taught me so much more than I could ever learn from an educational institution. He is funny and thoughtful and so incredibliy smart. His brain is a giant memory box and he has so much to contribute but sadly even those few kids that intereact with him dont realize his potential. He tries sometime to get into the conversation but the kids run on a different RPM than he does. It takes some time to deficer his thought and speaking patterns but once you take the time to listen and develop his train of thought you learn he has everything we do it just comes out differently.
The other night I said something about a TV show having "crap" on and he laughed and laughed till he almost couldn't see straight and it was so joyful to see him have a "moment of Normalcy". To know he has such great potential gives me great joy and I only hope that in the future someone out there will see what I see .
For now I just want to encourage those who read this to be aware of what a great gift your child is even with this DAMN AUTISM and if you dont have someone who is Autistic to appreciate your your "typical" kids even when they drive you nuts AND to hopefully embrace this article and pass it on to someone who can learn from it!
Tuesday, September 21, 2010
Happy Birthday My BOY
Goofys Kitchen September 2010
Well lots of time has gone by since my last posting. I am not sure if I have been overwhelmed, busy or unable to managed time or all of the afore mentioned.
I have so much inside that I want to write about but I seem to watch the days go by and just cannot find a way to devote enough time to writing.
Well this past month we took a special day just to go see the new "World of Color" @ California Adventure , then a couple days later we were able to be a part of a taping for Big Brother--one of Dakotas favorite reality shows -- Labor Day week end came and then we were off to Disneyland for 5 days.
Almost a quarter of a century ago I gave birth to a baby that was not expected to live. The doctors had him in the hospital for 3 weeks after he was delivered and the prognosis was not positive-- They did not expect him to live---
He is truly a miracle and considering what we went through we are fortunate that he is as functional as he is. I would not trade him for all the money in the world and I love him with all my heart.He has been a learning experience for me and has taught me many valuable lessons. I grieve that he will not have all lifes experiences a typical kid would have YET I continue to be relentless in pursuit of giving him as much normalcy as he can tolerate.
Dakotas birthday trip was a sucess in my book . You always wish a few thiings would have been different but anytime you see happiness and smiles with appropriate behavior and controll of situations that would have once wreaked havoc IT goes in the WIN column!
We were able to have a group party at Goofys Kitchen with a few of his friends, a couple of his teachers and some family-- WE had a great time! 2 of the boys were able to spend the night and then all of us would go to the parks the next day. Again a sucess-- When it came time for the boys to leave was the only low point of the day. Over the couse of 5 days there were only 2 "infractions " that are worth acknowledging and actually one was when we were leaving so I cant blame him for the feelings of transition and sadness for leaving!
All in all a great time and lots of fun
Happy Birthday to My BOY
I hope we have may many many more to celebrate .
I Love you bigger than the sky
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