New Years Eve is here and the day has already presented new challenges!
The television has a significant role in the household-- mainly a time and schedule or routine "driver". Although most would agree that phasing out or total elimination of this "medium" would be for the best, I challenge anyone who lives with Autism everyday to inflict this course of action. Believe me I have attempted change not only with this particular issue but with many other "routine drivers". The outcome is always the same--uncontrollable behavior driven by fear.
The simple suggestion of changing or eliminating usually results in a major disruption for the day.I want with all my heart to challenge Dakota. To give him opportunity for growth. to educate him and give him options which enhance his ability to live along with others who are not Autistic as well as allowing him to blend better in the community.
After 23 years and after the past 30 minuytes I arrive at the same conclusion every time--WHY?
Why make him get upset?Why male him scream and yell? Why make him experience any more crap than he has to on his own? Why push buttons to make the static that seems to be resting in the back of his grey matter come to the surface?
It is always with love and intent to make him a better person to challenge him but when I consistantly see his "revolt" --I know why I dont do things -- I always have trouble conveying this to others.
I guess the answer to that quandry comes back the same everytime too! Often I feel it presents a learning experience, The bottom line is that if it does not effect another person I dont own them an explanation or justification.
The New Year is here and we all like the idea of freash starts and changing bad habits. For those who live with Autism its about keeping what you can the same and "tweaking" what you can.Never allow others to drive your desire or parenting skills for your kids. I think that is universal.
Thursday, December 31, 2009
Sunday, December 27, 2009
Another funny reference
Ok there are many levels of Autism and we all stuggle as caregivers to do the best we can with what we got! In others words you have mild or moderate, Aspbergers, High Functioning etc. They are all labels that are really more for those of us who don't have Autism than it is for the person.There is also what they call Savant/Idiot-- which is similar to what was portrayed in the movie "RainMan". This is highly prevalent in most Autistic people just in different levels.It manifests itself as strange unexplicable skills or knowledge about things that the person has had no exposure to. {Like my excerpt about Mac Beth}
Well it happened again---
We were watching an animated story with Alvin and the Chipmunks. This story was Christmas related with a story that was similar to a Christmas Carol but it used a different format for the different stages of Christmas past present and future. Dave {the caretaker of the Chipmunks}fell asleep and was awakened by the television.A ghostly figure appeared and started to say "Dont adjust your screen,what you are about to witness has no time and space...etc" and all of a sudden Dakota blurts out "hey thats the Twilght Zone" He has the biggest smile on his face and he is laughing.
I was again taken back---flabbergasted trying to figure out how he made the connection as I know he has had no exposure to Rod Serling or the TV show. Now, I know he loves the Hollywood Tower of Terror a ride at California Adventure. They do have some clips of the the Twilight Zone so I am sure that is where he got the information. However the fact that he was able to transfer and de-code the media and apply it to another situation was impressive to say the least.
These all seem like simple things to most but for those of us who constantly face the skepticism from professionals, educators, friends and family alike that our kids cannot learn or dont have the ability to think globally; this is another example that it is just not true.
I continue to be renewed every time something like this happens. You have to have faith that there is a person in there who thinks and feels and has needs and wants. Do not ever give up on
that. Do not let others "rain on your parade".
Have faith and perservere. You just never know when the day will come that the brain clicks and the fog is lifted. Any little thing like this can not only make your day, it makes a case that your child has the ability to learn and has potential to continue trying. Be Relentless
Well it happened again---
We were watching an animated story with Alvin and the Chipmunks. This story was Christmas related with a story that was similar to a Christmas Carol but it used a different format for the different stages of Christmas past present and future. Dave {the caretaker of the Chipmunks}fell asleep and was awakened by the television.A ghostly figure appeared and started to say "Dont adjust your screen,what you are about to witness has no time and space...etc" and all of a sudden Dakota blurts out "hey thats the Twilght Zone" He has the biggest smile on his face and he is laughing.
I was again taken back---flabbergasted trying to figure out how he made the connection as I know he has had no exposure to Rod Serling or the TV show. Now, I know he loves the Hollywood Tower of Terror a ride at California Adventure. They do have some clips of the the Twilight Zone so I am sure that is where he got the information. However the fact that he was able to transfer and de-code the media and apply it to another situation was impressive to say the least.
These all seem like simple things to most but for those of us who constantly face the skepticism from professionals, educators, friends and family alike that our kids cannot learn or dont have the ability to think globally; this is another example that it is just not true.
I continue to be renewed every time something like this happens. You have to have faith that there is a person in there who thinks and feels and has needs and wants. Do not ever give up on
that. Do not let others "rain on your parade".
Have faith and perservere. You just never know when the day will come that the brain clicks and the fog is lifted. Any little thing like this can not only make your day, it makes a case that your child has the ability to learn and has potential to continue trying. Be Relentless
Saturday, December 26, 2009
What a Difference a week makes!
Yes this is all hindsight--- but i have to say that today was a 180 from last week! Again it just goes to show you that Autism just has to show you that "IT" is in charge.
I must admit that those days are enough to send you to the crazy farm. You feel helpless, you search your soul for what happened and how it could have been different. You feel emotions for your kid and what he is going thru and you are exhausted because of the combination of all the afore mentioned STUFF. This is not unusual, anyone who lives with Autism knows this situation. It is not fun.
What I can say is that when you have a day like to day is renews you. It also allows you to see and consider things that were not in your tool belt last week! Every day is a learning experience.
What I believe now is that the volatile behavior was a pre cursor to him getting sick. That's the simple answer. The answer for that specific occurance many times its not that simple-- You just have to be a detective; many times the answer will not come till days or even weeks later. All you can do is use that info the next time you encounter crap behavior! Maybe it will help maybe not. Just dont give up. Try to preserve calm and ignore as much as you can. Use your knowledge to help your child. AND I will say this is all easier said than done!
I must admit that those days are enough to send you to the crazy farm. You feel helpless, you search your soul for what happened and how it could have been different. You feel emotions for your kid and what he is going thru and you are exhausted because of the combination of all the afore mentioned STUFF. This is not unusual, anyone who lives with Autism knows this situation. It is not fun.
What I can say is that when you have a day like to day is renews you. It also allows you to see and consider things that were not in your tool belt last week! Every day is a learning experience.
What I believe now is that the volatile behavior was a pre cursor to him getting sick. That's the simple answer. The answer for that specific occurance many times its not that simple-- You just have to be a detective; many times the answer will not come till days or even weeks later. All you can do is use that info the next time you encounter crap behavior! Maybe it will help maybe not. Just dont give up. Try to preserve calm and ignore as much as you can. Use your knowledge to help your child. AND I will say this is all easier said than done!
Sunday, December 20, 2009
MacBeth Act 5 Scene 1
This is a most pecuilar story. One that needs to be added to the many that have been told about our kids and their uncanny ability to know things that we just cannot explain!
Although I try to tread lightly and am aware that the "static" becomes overwhelming for him, I continue to gently urge him to express what he is feeling so I can help him through this rough patch. Also to remind him that he does not have a "moving message board" on his forehead that explains why or what he is thinking. He needs to talk; to tell someone what he is experiencing so they can help.
In the midst of what seemed to be one of the most intense "blow ups" or "blow outs" described in the previous entry Dakota was growing increasingly pissed off at me challenging him to talk about what was going on inside his head and why he was behaving the way he was--- He jumped up and attemted to "banish me" from the room. He was angry and aggrevated and wanted me gone. From no where he stands up raises his arm and points with his arm extended slightly towards the ceiling and shouts "Out" "OUT dammed spot" "Out I say"!
It stopped me in my tracks for a moment. My inner dialogue says "where the hell did he get Shakespeare from?" I was flabbergasted not only at the quote but the appropriate nature of his command. I know that no where in his educational exposure has he ever heard or seen MacBeth and I was knocked out with amazement.
In all fairness I know the phrase has been used in some advertisement media but I honestly cannot recall nor to I remember having any exposure to this phrase.
Call it what you will, dismiss it if you like--I choose to believe that it was some kind of savant skill that surfaced, like the kid that plays Mozart at 3 or the one who graduates from college at 10.
Our kids are so under-rated.Professionals including teachers and school personel as well as many family members fail to acknowledge that these kids have talents that go undiscovered simply becuase most think they are unable to "perform typically".
Please take note of little nuances your child reveals you never know there may be a a hidden talent that just needs a chance. For me I will continue to dig a little deeper to see if more Shakespeare is hiding underneath the guise of AUTISM!
Although I try to tread lightly and am aware that the "static" becomes overwhelming for him, I continue to gently urge him to express what he is feeling so I can help him through this rough patch. Also to remind him that he does not have a "moving message board" on his forehead that explains why or what he is thinking. He needs to talk; to tell someone what he is experiencing so they can help.
In the midst of what seemed to be one of the most intense "blow ups" or "blow outs" described in the previous entry Dakota was growing increasingly pissed off at me challenging him to talk about what was going on inside his head and why he was behaving the way he was--- He jumped up and attemted to "banish me" from the room. He was angry and aggrevated and wanted me gone. From no where he stands up raises his arm and points with his arm extended slightly towards the ceiling and shouts "Out" "OUT dammed spot" "Out I say"!
It stopped me in my tracks for a moment. My inner dialogue says "where the hell did he get Shakespeare from?" I was flabbergasted not only at the quote but the appropriate nature of his command. I know that no where in his educational exposure has he ever heard or seen MacBeth and I was knocked out with amazement.
In all fairness I know the phrase has been used in some advertisement media but I honestly cannot recall nor to I remember having any exposure to this phrase.
Call it what you will, dismiss it if you like--I choose to believe that it was some kind of savant skill that surfaced, like the kid that plays Mozart at 3 or the one who graduates from college at 10.
Our kids are so under-rated.Professionals including teachers and school personel as well as many family members fail to acknowledge that these kids have talents that go undiscovered simply becuase most think they are unable to "perform typically".
Please take note of little nuances your child reveals you never know there may be a a hidden talent that just needs a chance. For me I will continue to dig a little deeper to see if more Shakespeare is hiding underneath the guise of AUTISM!
The "Holidays" have officially arrived!
Well I guess it has to happen some time. Hip Hip Hooray the holidays have finally come in with a bang!
I write about this every year and I keep a close watch on schedule, routine and making sure things are well thought out but no matter how hard I try it seems like that nasty ole Autism has a way to rear its ugly head and make sure I know that ultimately "IT" is control. I do not consider myself a control freak, nor am I one who has to have order in my life. Autism does not roll that way so I do what I can to keep life as smooth as possible.
Yes, you are right we had the first big "blow out" of the season. Even with 23 years of experience behind me I still do not know what the hell happened. I admit I have seen similar behavior before surrounding the same situation but today was intense. I have been trying to "de-code" all the ques and figure out what to do, how to handle it or at least plan the best defense for the next time.
It stems from the Saturday routine -- without going into particulars we went through the typical schedule upon arriving home he went straight to the bedroom, pulled his clothes off and flopped on the bed. I went in to encourage him to come out and "IT" was on! Every nasty bad word came flying out of his mouth in a shrieking pitch. Then the growls and physical flailing of the arms. The anger and aggression is never with intent but it is always out of control. I try with every ounce of my being to not "retaliate" or become physical toward him because I believe that all it will yield more aggression. So the obvious is to not react. There's a point where survival kicks in and you have to defend yourself but that is only if injury is looming. This is my baby and I love him and I dont want to hurt him in any fashion BUT I cannot allow him to hurt me or others.
I have to somehow get through to him; that this is NOT acceptable. He could potentially become aggressive toward the wrong person and he will end up getting punched or worse. How do you do that when it seems as if all reason and sanity has gone out the door???
Unfortunately I do not have a "pat" answer. Pulling from as far back as Dakota's infant years I can remember when he would get so damn mad he would be screaming and crying and nothing would soothe him. So I would take him into the bathroom, turn out the lights and deprive him of all sensory; just hold him and usually in a few minutes he would come around. Using similar technique now I have discovered that the best strategy is to just walk away and leave him alone and let his brain "re-set". Of course you have to be very aware of the surroundings. {making sure that there is nothing that he could pick up, ingest or hurt him}
Now that I have several hours under my belt since the "incident" my observation is a bit less reactive and more cerebral. The first notation is this behavior is almost seizure like-- the loss of control and inability to manage his thoughts and actions. He literally has no control or intent with his actions. I fear that most anyone would misinterpret his behavior. "Typical" People do not possess the tolerance to really understand our kids-- they could potentially hurt them or worse drug them into a stooper just to "manage them". The second thing that occurs to me is potential illness. I always try to rule out this from the onset of behavior. Often this is difficult because of his high tolerance to pain and inability to communicate whats bothering him. And finally I tend to think that Dakota may be trying to break his own routine but its is so difficult for him again with his inability to convey that he is trying to change. I believe that he does have a keen awareness his challenges and he honestly is trys to change things up to break the cycle.
This was a significant incident that brought out a lot of emotiuons and feelings of helplessness. Being in the middle of a situation happening so fast and furious it is so hard to figure out what to do and how to handle it--- The best advice I can give is to back out of the situation, take 5 minutes, breathe, think, analyze, wait and pray for devine intervention, some kind of guidance or an epiphany. AND
Remember it is Autism and this is their disability -- it is not their fault.
You can be sad, you can hate it but it is what it is and there will be days like this-- Just pull yourself up by the boot straps and get on with life cuz maybe tommorrow will be a day that your child laughs and has a happy day.
I write about this every year and I keep a close watch on schedule, routine and making sure things are well thought out but no matter how hard I try it seems like that nasty ole Autism has a way to rear its ugly head and make sure I know that ultimately "IT" is control. I do not consider myself a control freak, nor am I one who has to have order in my life. Autism does not roll that way so I do what I can to keep life as smooth as possible.
Yes, you are right we had the first big "blow out" of the season. Even with 23 years of experience behind me I still do not know what the hell happened. I admit I have seen similar behavior before surrounding the same situation but today was intense. I have been trying to "de-code" all the ques and figure out what to do, how to handle it or at least plan the best defense for the next time.
It stems from the Saturday routine -- without going into particulars we went through the typical schedule upon arriving home he went straight to the bedroom, pulled his clothes off and flopped on the bed. I went in to encourage him to come out and "IT" was on! Every nasty bad word came flying out of his mouth in a shrieking pitch. Then the growls and physical flailing of the arms. The anger and aggression is never with intent but it is always out of control. I try with every ounce of my being to not "retaliate" or become physical toward him because I believe that all it will yield more aggression. So the obvious is to not react. There's a point where survival kicks in and you have to defend yourself but that is only if injury is looming. This is my baby and I love him and I dont want to hurt him in any fashion BUT I cannot allow him to hurt me or others.
I have to somehow get through to him; that this is NOT acceptable. He could potentially become aggressive toward the wrong person and he will end up getting punched or worse. How do you do that when it seems as if all reason and sanity has gone out the door???
Unfortunately I do not have a "pat" answer. Pulling from as far back as Dakota's infant years I can remember when he would get so damn mad he would be screaming and crying and nothing would soothe him. So I would take him into the bathroom, turn out the lights and deprive him of all sensory; just hold him and usually in a few minutes he would come around. Using similar technique now I have discovered that the best strategy is to just walk away and leave him alone and let his brain "re-set". Of course you have to be very aware of the surroundings. {making sure that there is nothing that he could pick up, ingest or hurt him}
Now that I have several hours under my belt since the "incident" my observation is a bit less reactive and more cerebral. The first notation is this behavior is almost seizure like-- the loss of control and inability to manage his thoughts and actions. He literally has no control or intent with his actions. I fear that most anyone would misinterpret his behavior. "Typical" People do not possess the tolerance to really understand our kids-- they could potentially hurt them or worse drug them into a stooper just to "manage them". The second thing that occurs to me is potential illness. I always try to rule out this from the onset of behavior. Often this is difficult because of his high tolerance to pain and inability to communicate whats bothering him. And finally I tend to think that Dakota may be trying to break his own routine but its is so difficult for him again with his inability to convey that he is trying to change. I believe that he does have a keen awareness his challenges and he honestly is trys to change things up to break the cycle.
This was a significant incident that brought out a lot of emotiuons and feelings of helplessness. Being in the middle of a situation happening so fast and furious it is so hard to figure out what to do and how to handle it--- The best advice I can give is to back out of the situation, take 5 minutes, breathe, think, analyze, wait and pray for devine intervention, some kind of guidance or an epiphany. AND
Remember it is Autism and this is their disability -- it is not their fault.
You can be sad, you can hate it but it is what it is and there will be days like this-- Just pull yourself up by the boot straps and get on with life cuz maybe tommorrow will be a day that your child laughs and has a happy day.
Tuesday, December 8, 2009
My Baby cried like a Baby today.
There are so many myths about what Autism is and how it affects those who are challenged with this crazy diagnosis. One of the most prevelant is; our kids are so socially inept that they have no emotion or they have no preception how to display what emotion they might feel. A contributing factor to this is; many are unable to grasp "conceptual thinking" which is a part of their inability to show emotion.
Dakota is for the most part one of these individuals. He has a high tolerance for pain and internalizes most of his feelings by no language or eye contact. Even when you challenge him to respond--he hears you and he understands you but 90% of the time he refrains from acknowledging any inquiry you have for him.
Even when we have lost pets or people who are a part of our "world" his reaction is relatively nill. Often several days later he will intitiate some conversation about the subject but almost always with very little emotion. Adversely I have also witnessed what appears to be callous response to someone who has hit their head or stubbed their toe. He often laughs inappropriately and seems to find humor alomst pleasure from someone elses pain.{I know in my head that this is just the Autism however there have been occassions where those close to him and his diagnosis have become perturbed with his reaction--simply because they do not understand it}
Well today was a different day. It is a fine line between sorrow since my baby was sad and joy that I was witnessing a break through.
Dakota has suffered and extreme amount of anxiety about leaving school. So in an effort to keep him "connected" with the class, teacher and instructional aides we have tried to participate in a few activities since he graduated .
This morning we met the class at Target for the Best Buddies Christmas shopping trip. He was so excited he got up and was ready to go way before he usually even wakes up! We got dressed and when we entered the store he was so happy! It was his "Nirvana". He saw his friend and immediately glommed on and that was it-- "leave me alone Mom".
I need to finish later cuz Dakota is nervous about me writing----OK
Dakota was inner-acting with the Best Buddies {the typical peers that are paired with the special kids} and of course those whom he knew from his class last year. Everytime he saw someone else his face lit up. He wanted nothing to do with me--In fact they all gathered in the little cafe and were having a snack and he literaly pushed me away--- I retreated to the car to allow him to have his time with his friends.
Afterall the fall-der-all the kids started coming out and getting ready to get on the bus to head back to school. I walked up and said "Come on Dakota we will follow the bus back"--about that time his teacher came out and said "I am sorry Dakota you cannot ride on the bus". In that moment it seems that all was ok. We walked back to our car, got inside and positioned ourselves to watch the bus so that when it took off we would be right behind it. I noticed that Dakota has gotten very quiet and he was starting to say things about school and the class and the fact that he was too old to be in class. His mouth started to pucker up and the corners turn down. I knew he was escalating. I felt so helpless cuz I didnt know how to stop the hurt. For a few moments I beat myself up for even coming to the event. Then I realized I had a bigger mission here--What was done was done.I had to somehow make this a positive experience. As the bus turned out of the parking lot and headed for school the sorrow just became overwhelming for him. Huge crockadile tears, sobbing and snorting
Oh My God I dont think I have ever seen this much emotion. He was beside himself. Of course he lamented "They dont want me anymore!!!" "I didnt even graduate!" "They dont want me in the class!" My heart ached. I felt so incredibily bad for him. I actually pulled the car over and gave him a hug. I told him it was OK to be sad. He has the right to miss his friends. The important thing is for him to realize that is why you have to use the phone and email to keep in touch. So even if you don't see them in school every day you can still be their friends long after school is over for everyone.
He gathered his thoughts and sniffled quite a bit. I contemplated for a split moment not to go back to the school but thought differently in a few minutes. Following thru on the intial plan to return to the school and the class was the right thing to do. It was what we planned and discussed. By not following through I could have made the situation worse.
When we arrived at the school we entered the classroom and in the very front of the class on the chalk board was a picture of Dakota. The teacher pointed out to him that even tho he has completed his class he is still there every day looking back at those who are still there. He nestled up to his best friend and they even went out and visited at the benches . I spent a few more minutes with the teacher and then Dakota came back in and said it was time to go--- I was so proud and sad and happy and sorrowful all in one big ball. I didnt know what to feel. I knew that things happened today--Dakota really discovered some true emotion today and also how to recover and manage it.
I dont think we are ever prepared for things like this . In the moment they can feel "icky". Once you reflect and see the bigger picture its actually your child growing and experiencing situations that perhaps we thought they might never experience! AND in the end---it was a great day!!!!!!!!
Dakota is for the most part one of these individuals. He has a high tolerance for pain and internalizes most of his feelings by no language or eye contact. Even when you challenge him to respond--he hears you and he understands you but 90% of the time he refrains from acknowledging any inquiry you have for him.
Even when we have lost pets or people who are a part of our "world" his reaction is relatively nill. Often several days later he will intitiate some conversation about the subject but almost always with very little emotion. Adversely I have also witnessed what appears to be callous response to someone who has hit their head or stubbed their toe. He often laughs inappropriately and seems to find humor alomst pleasure from someone elses pain.{I know in my head that this is just the Autism however there have been occassions where those close to him and his diagnosis have become perturbed with his reaction--simply because they do not understand it}
Well today was a different day. It is a fine line between sorrow since my baby was sad and joy that I was witnessing a break through.
Dakota has suffered and extreme amount of anxiety about leaving school. So in an effort to keep him "connected" with the class, teacher and instructional aides we have tried to participate in a few activities since he graduated .
This morning we met the class at Target for the Best Buddies Christmas shopping trip. He was so excited he got up and was ready to go way before he usually even wakes up! We got dressed and when we entered the store he was so happy! It was his "Nirvana". He saw his friend and immediately glommed on and that was it-- "leave me alone Mom".
I need to finish later cuz Dakota is nervous about me writing----OK
Dakota was inner-acting with the Best Buddies {the typical peers that are paired with the special kids} and of course those whom he knew from his class last year. Everytime he saw someone else his face lit up. He wanted nothing to do with me--In fact they all gathered in the little cafe and were having a snack and he literaly pushed me away--- I retreated to the car to allow him to have his time with his friends.
Afterall the fall-der-all the kids started coming out and getting ready to get on the bus to head back to school. I walked up and said "Come on Dakota we will follow the bus back"--about that time his teacher came out and said "I am sorry Dakota you cannot ride on the bus". In that moment it seems that all was ok. We walked back to our car, got inside and positioned ourselves to watch the bus so that when it took off we would be right behind it. I noticed that Dakota has gotten very quiet and he was starting to say things about school and the class and the fact that he was too old to be in class. His mouth started to pucker up and the corners turn down. I knew he was escalating. I felt so helpless cuz I didnt know how to stop the hurt. For a few moments I beat myself up for even coming to the event. Then I realized I had a bigger mission here--What was done was done.I had to somehow make this a positive experience. As the bus turned out of the parking lot and headed for school the sorrow just became overwhelming for him. Huge crockadile tears, sobbing and snorting
Oh My God I dont think I have ever seen this much emotion. He was beside himself. Of course he lamented "They dont want me anymore!!!" "I didnt even graduate!" "They dont want me in the class!" My heart ached. I felt so incredibily bad for him. I actually pulled the car over and gave him a hug. I told him it was OK to be sad. He has the right to miss his friends. The important thing is for him to realize that is why you have to use the phone and email to keep in touch. So even if you don't see them in school every day you can still be their friends long after school is over for everyone.
He gathered his thoughts and sniffled quite a bit. I contemplated for a split moment not to go back to the school but thought differently in a few minutes. Following thru on the intial plan to return to the school and the class was the right thing to do. It was what we planned and discussed. By not following through I could have made the situation worse.
When we arrived at the school we entered the classroom and in the very front of the class on the chalk board was a picture of Dakota. The teacher pointed out to him that even tho he has completed his class he is still there every day looking back at those who are still there. He nestled up to his best friend and they even went out and visited at the benches . I spent a few more minutes with the teacher and then Dakota came back in and said it was time to go--- I was so proud and sad and happy and sorrowful all in one big ball. I didnt know what to feel. I knew that things happened today--Dakota really discovered some true emotion today and also how to recover and manage it.
I dont think we are ever prepared for things like this . In the moment they can feel "icky". Once you reflect and see the bigger picture its actually your child growing and experiencing situations that perhaps we thought they might never experience! AND in the end---it was a great day!!!!!!!!
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