When you first start this journey there is so much information flying past you it is a miracle that you remember or retain any of it! Certain things seem to stick and I have come to the conclusion that it is because those things either make sense or seem to apply somewhere !
One of these little gems was the documentation about inanimate objects and how our kids don't seem to bond or derive any pleasure from the "typical" toys or stuffed animals; that they nstead prefer to attach themselves to "things" like jars or cans or brushes or any other item you can think of that would not necessarily be of any interest to a child--- Nothing colorful or frilly; soft or cuddly nothing that has an identity like an animal but just STUFF.
Even now at 24 I find this incredibily fascinating--
And just yesterday I walked back into the bedroom only to find an array of objects spread around the bed.
A plastic Banana Hair clip; a bottle of Moouse; a little box of floss; a comb;a spray bottle of febreeze; a dispenser for tape and some stick deodorant!
You cant help but have a little chuckle when you know these are unrelated other than they can all be found in the same general location.
An extension to this is that the items get transported from room to room.I cannot tell you how many times I have walked into the kitchen and I will see a toothbrush or I walk into the bathroom and a spatula has found it's way there!
Its really not a big deal; its just a part of Autism and I have to say there are so many other issues it is actually a part of this disorder that can be entertaining. Don't want anyone to think I am making fun but when you realize that this is a forever situation it is so important to take every opportunity to find the silver lining whenever possible!
Monday, March 21, 2011
Sunday, March 6, 2011
Emotions and Crying
This is such a tough subject for me---
Primarily because it has such a "double edge".
On one hand you live for the moments your child actually experiences typical behavior and feelings;
On the other it tears your heart out to see them sad or confused or even elevated with aggression because their brain does have the capability to decipher whats "normal" and whats not!
I REALLY HATE USING THE WORDS TYPICAL OR NORMAL OR REGULAR . Sometimes it is the only way to describe what I know as a person who does not have Autism and what I see and experience as a mother of a child who has lived with Autism for over 20 years.
Recently Dakota seems to have heightened emotions which are manifesting in crying many times. He has had some new awakenings about many feelings and emotions, not just sad ones, but those are the ones that are most difficult to deal with . When he puckers up and becomes distraught it is a helpless feeling because he is unable to reason WHY he is feeling sad. The natural progression of an interaction would be to show compassion and/or empathy and to try to comfort Dakota. The difficult part is that he cannot express what is triggering his sadness and tears.
Then I arrive at a place where the more I press him sometimes causes the emotions to escalate yet if I ignore them I often feel like I have missed an opportunity to crack open another little part of "normalcy".
The hardest part of all is that this has spilled over into other situations outside of home . That makes it even harder because others are really baffled how to handle it.There does seems to be some predictability to it, as small as it seems, the crying almost always follows the end to something-- whether it be a movie or a goodbye to a person or even leaving one place to go to another. I know that in someways that seems obvious but in other ways it almost seems too simple.
No one ever has said that Autism is simple . I do know that sometimes the most simple solutions are the best for our kids. Being practical and utilizing your "gut" feeling is almost always the best way to handle any situation .
For now this is one of the most pressing issues or at least tone of the most predominant- I know we have been going through many stages with various behaviors and I am sure there will be more as the years roll by . The one assurance I have is that with every day and every issues I learn a little more about my guy and it makes me a better parent to help him through this world!
Primarily because it has such a "double edge".
On one hand you live for the moments your child actually experiences typical behavior and feelings;
On the other it tears your heart out to see them sad or confused or even elevated with aggression because their brain does have the capability to decipher whats "normal" and whats not!
I REALLY HATE USING THE WORDS TYPICAL OR NORMAL OR REGULAR . Sometimes it is the only way to describe what I know as a person who does not have Autism and what I see and experience as a mother of a child who has lived with Autism for over 20 years.
Recently Dakota seems to have heightened emotions which are manifesting in crying many times. He has had some new awakenings about many feelings and emotions, not just sad ones, but those are the ones that are most difficult to deal with . When he puckers up and becomes distraught it is a helpless feeling because he is unable to reason WHY he is feeling sad. The natural progression of an interaction would be to show compassion and/or empathy and to try to comfort Dakota. The difficult part is that he cannot express what is triggering his sadness and tears.
Then I arrive at a place where the more I press him sometimes causes the emotions to escalate yet if I ignore them I often feel like I have missed an opportunity to crack open another little part of "normalcy".
The hardest part of all is that this has spilled over into other situations outside of home . That makes it even harder because others are really baffled how to handle it.There does seems to be some predictability to it, as small as it seems, the crying almost always follows the end to something-- whether it be a movie or a goodbye to a person or even leaving one place to go to another. I know that in someways that seems obvious but in other ways it almost seems too simple.
No one ever has said that Autism is simple . I do know that sometimes the most simple solutions are the best for our kids. Being practical and utilizing your "gut" feeling is almost always the best way to handle any situation .
For now this is one of the most pressing issues or at least tone of the most predominant- I know we have been going through many stages with various behaviors and I am sure there will be more as the years roll by . The one assurance I have is that with every day and every issues I learn a little more about my guy and it makes me a better parent to help him through this world!
Saturday, March 5, 2011
Best Friends????
When I first started this journey over 20 years ago Autism was still somewhat of a mystery. There were still many opinions about its origins and how or what to do to help those who have this crappy disorder---
It is quite disheartening as you see a fairly "typical" child from appearance, yet know and witness time after time the most screwy and unpredictable behavior that also chooses the most inconvenient times to rear its ugly head.
You read, attend support groups, search out professionals and parents or caregivers and educate yourself every way possible to help your child de-code the world.
There were many accounts of sad and unpleasant writings about frigid mother syndrome, frontal lobotomies, and permanent placement in State hospitals. As the years developed more understanding which was coupled with growing numbers of diagnosis' more professionals were starting to study and publish more promising and helpful information. Which leads in to the title of this passage "Best Friends" ;
Very early on one observation that didn't seem to have much relevance but kept reoccurring was that Autistic kids found peace and solace with things like the computer or television because they were constant and consistent; they didn't talk back and they always gave the same answer or information with the lack of emotion or personal interaction. I filed this in the back of my head and used it as I could while Dakota was in school but it was not till a week or so I had what I call a "Should have had a V-8" moment-- kinda like an ephiphamy.
I have had a lot of difficulty getting Dakota out and away from the TV and I have felt very guilty about it until now. I know he needs variety and he needs physical activity and he needs to do something else but sit and live by the schedule of the TV. As a concerned mother I embrace that theory. I also embrace the fact that this is not a typical kid and most typical kids don't want to interactt with Dakota. Those that do only do it in a limited matter and he is not one to inititate. He has feelings and longs to have what every body wants which is friends but how do you do that?? You do everything you can to get out and get exposure and involvement BUT he has the right to his own preferences.
His TV "buddies" have become his Best Friends. The shows that have Drew Carey, Wayne Brady, Steve Harvey, John O'Hurley or even Harvey Levin just to name a few those are Dakotas Best Friends.that's why Dakota gets so distraught when he has to give up is shows-- its like leaving his friends.
It may not seem normal but what is normal with Autism. I think it like anything else you have to pick your battles and you have to filter out what other might think or say and DO WHATS RIGHT FOR YOUR KID!If your kid has to struggle thru every hour or everyday with a stupid disability that buzzes in his head isn't it only fair to let him have the "buddies he wants and let him decided who he wants for "Best Friends"?-------
It is quite disheartening as you see a fairly "typical" child from appearance, yet know and witness time after time the most screwy and unpredictable behavior that also chooses the most inconvenient times to rear its ugly head.
You read, attend support groups, search out professionals and parents or caregivers and educate yourself every way possible to help your child de-code the world.
There were many accounts of sad and unpleasant writings about frigid mother syndrome, frontal lobotomies, and permanent placement in State hospitals. As the years developed more understanding which was coupled with growing numbers of diagnosis' more professionals were starting to study and publish more promising and helpful information. Which leads in to the title of this passage "Best Friends" ;
Very early on one observation that didn't seem to have much relevance but kept reoccurring was that Autistic kids found peace and solace with things like the computer or television because they were constant and consistent; they didn't talk back and they always gave the same answer or information with the lack of emotion or personal interaction. I filed this in the back of my head and used it as I could while Dakota was in school but it was not till a week or so I had what I call a "Should have had a V-8" moment-- kinda like an ephiphamy.
I have had a lot of difficulty getting Dakota out and away from the TV and I have felt very guilty about it until now. I know he needs variety and he needs physical activity and he needs to do something else but sit and live by the schedule of the TV. As a concerned mother I embrace that theory. I also embrace the fact that this is not a typical kid and most typical kids don't want to interactt with Dakota. Those that do only do it in a limited matter and he is not one to inititate. He has feelings and longs to have what every body wants which is friends but how do you do that?? You do everything you can to get out and get exposure and involvement BUT he has the right to his own preferences.
His TV "buddies" have become his Best Friends. The shows that have Drew Carey, Wayne Brady, Steve Harvey, John O'Hurley or even Harvey Levin just to name a few those are Dakotas Best Friends.that's why Dakota gets so distraught when he has to give up is shows-- its like leaving his friends.
It may not seem normal but what is normal with Autism. I think it like anything else you have to pick your battles and you have to filter out what other might think or say and DO WHATS RIGHT FOR YOUR KID!If your kid has to struggle thru every hour or everyday with a stupid disability that buzzes in his head isn't it only fair to let him have the "buddies he wants and let him decided who he wants for "Best Friends"?-------
Monday, February 14, 2011
Happy Valentines Day
When holidays come around they are such a double edged --- theres the simple pleasure of the little fun things that holidays bring like the decoration or the funny cards then there is the realization that it is mostly what I make it and how will Dakota enjoy or celebrate these days when I am no longer here to "make things happen". Of course the simple answer is that I wont have any control or knowledge for that matter and it will be what it will be but as a parent I cannot help ponder the inevitable.
When we have typical kids; they grow and separate from us and they make it what they want it to be or what their "significant other" wants it to be. Our kids are not that lucky-- so few of them will ever have a partner and many will be lucky to have family or close friend who have some interest in providing a little glee in their lives---and with Autism most of the kids will not express delight but still expect the hoopla that generates it... Then the person who is trying will question if it is even worth doing any thing since the Autistic individual didn't re act to their efforts---Oh what a confusing mess--- really something only a Mom or Dad would understand . Or perhaps even think about.
Never the less everyday that we are here and every holiday that comes we will press on with the expressed intent that No matter what we are making memories---That is the most important of all . They can take away physical possessions but they cannot take away memories and one thing we know is that "OUR" kids do not forget!
So tomorrow there will be a little candy and a card, maybe a small present and a fun activity --- another memory shared! Happy Valentines Day !
When we have typical kids; they grow and separate from us and they make it what they want it to be or what their "significant other" wants it to be. Our kids are not that lucky-- so few of them will ever have a partner and many will be lucky to have family or close friend who have some interest in providing a little glee in their lives---and with Autism most of the kids will not express delight but still expect the hoopla that generates it... Then the person who is trying will question if it is even worth doing any thing since the Autistic individual didn't re act to their efforts---Oh what a confusing mess--- really something only a Mom or Dad would understand . Or perhaps even think about.
Never the less everyday that we are here and every holiday that comes we will press on with the expressed intent that No matter what we are making memories---That is the most important of all . They can take away physical possessions but they cannot take away memories and one thing we know is that "OUR" kids do not forget!
So tomorrow there will be a little candy and a card, maybe a small present and a fun activity --- another memory shared! Happy Valentines Day !
Sunday, January 16, 2011
What a Week
Its been quite a while since Dakota was physically sick-- I often find myself perplexed about this situation. Everyone has aches and pains both children and adults, yet it is a rare occurrence for Dakota to complain about ANYTHING. At least when it comes to physiological maladies.
Dakota has what I consider a high threshold for pain . However one might assume that he feels the pain but DOES NOT express his discomfort. With a diagnosis of autism it will always be a guessing game. He has speech and can express himself, yet when he is sick, his concern is more about how he wants it to go away and how bad he feels, NOT to tell anyone about it.
Surely he must have an pain in his leg, a headache, a cramp in a muscle or sinus pressure. Does he tell me??? NO I cannot imagine going thru life and having these small ailments and not taking preventative measures. I can assure you that HE just does not let anyone know how he is feeling., That is incredibly frustrating.
I am sure I am not the only parent who has a kid like this. It becomes a guessing game to figure out why and what is happening. I have often remarked it is like having an infant. You rely on your instincts and his behavior coupled with the physical "traits". {is he hot?/ is he grabbing or rubbing a part of his body? and of course is he physically ill?]
Well this week it was a wild ride-- somehow, somewhere Dakota got sick --really sick.Funny thing is that he is so sequestered from "people" I cant even figure out where he got it--BUT HE GOT IT!
The middle of the week he started with vomiting followed by diarrhea and before the week was over he woke up with chills and spiking temperature. OK so its not any different than anyone adult or child going thru This is where I say "WRONG"
Dakota not only absolutely hates to throw up but he hates to be anywhere near the toilet much less BEND OVER the toilet--when he gets sick.Needless to say there was a mess everywhere. Hey that's parenthood. This is a kid who does not spit, does not blow his nose, does not swallow pills so why would I think that issues with the toilet are unusual?{smile} By the time it subsided I had plastic on the mattress, almost all the sheets and towels in the house either in the washer or the dryer or waiting for the laundry. Coupled with that about 10 showers to clean up the boy, it was circus .
I guess why I write about this, is just another observation about how different it is when you have a kid that has challenges vs a kid that has the ability to understand in a typical manor.I would venture to guess that some parents who have autistic kids may not think about things like this. Dealing with the Autism is tough enough without adding additional care when they are sick. I just want to urge anyone caring for an autistic individual to keep a "keen eye" and "an ear to the ground". These kids could be telling us they are sick before the physical attributes show themselves.
All I can say is what a week !
Dakota has what I consider a high threshold for pain . However one might assume that he feels the pain but DOES NOT express his discomfort. With a diagnosis of autism it will always be a guessing game. He has speech and can express himself, yet when he is sick, his concern is more about how he wants it to go away and how bad he feels, NOT to tell anyone about it.
Surely he must have an pain in his leg, a headache, a cramp in a muscle or sinus pressure. Does he tell me??? NO I cannot imagine going thru life and having these small ailments and not taking preventative measures. I can assure you that HE just does not let anyone know how he is feeling., That is incredibly frustrating.
I am sure I am not the only parent who has a kid like this. It becomes a guessing game to figure out why and what is happening. I have often remarked it is like having an infant. You rely on your instincts and his behavior coupled with the physical "traits". {is he hot?/ is he grabbing or rubbing a part of his body? and of course is he physically ill?]
Well this week it was a wild ride-- somehow, somewhere Dakota got sick --really sick.Funny thing is that he is so sequestered from "people" I cant even figure out where he got it--BUT HE GOT IT!
The middle of the week he started with vomiting followed by diarrhea and before the week was over he woke up with chills and spiking temperature. OK so its not any different than anyone adult or child going thru This is where I say "WRONG"
Dakota not only absolutely hates to throw up but he hates to be anywhere near the toilet much less BEND OVER the toilet--when he gets sick.Needless to say there was a mess everywhere. Hey that's parenthood. This is a kid who does not spit, does not blow his nose, does not swallow pills so why would I think that issues with the toilet are unusual?{smile} By the time it subsided I had plastic on the mattress, almost all the sheets and towels in the house either in the washer or the dryer or waiting for the laundry. Coupled with that about 10 showers to clean up the boy, it was circus .
I guess why I write about this, is just another observation about how different it is when you have a kid that has challenges vs a kid that has the ability to understand in a typical manor.I would venture to guess that some parents who have autistic kids may not think about things like this. Dealing with the Autism is tough enough without adding additional care when they are sick. I just want to urge anyone caring for an autistic individual to keep a "keen eye" and "an ear to the ground". These kids could be telling us they are sick before the physical attributes show themselves.
All I can say is what a week !
Monday, January 10, 2011
Already a Week
Already---- a week has gone by---
So many things swirling around in my head yet I question the importance to others who might read this.I guess the real purpose of a blog is to express whatever you think or feel and not to be concerned with the "observers".
Looking back at "a year in a glance" there were many ups and downs . We lost a very important component to Dakota's independence and that was huge-- His friend,coach and mentor Brad Loula died in his sleep last June.The hardest part about his passing is the residual effect that it potentially has on Dakota--Autism is a very strange "animal" when it comes to emotion and feelings. Perhaps even the issues that we have had just recently could be Dakota feeling the loss from so many months ago and they are just now surfacing.
As for behaviors that too has been somewhat of a roller coaster. He has been having extreme highs and lows with several aspects of life. He had been attending a program specifically for Autism and somewhere things went sideways and he was lashing out at the person who was working with him so we have temporarily discontinued the program till he seems ready and accepting of trying again.
Add to that the extreme emotional acting out that has been on going for the past year -- it is continuing BUT I have to admit that it has drastically calmed down and in fact I have made some in-roads to acknowledge it and even discuss with Dakota about recognizing it and handling it --The occurrence level seems to be reducing. He and I continue to do the dance around the hair twisting and if I have not written and except about this I will -- although I know it has been an ongoing problem for several years-- since he broke his leg---AGAIN i will give him credit I have seen improvement in this area also;so I guess I have a lot to be happy about!
Dakota did take a "Get up and Move" Dance class that was very beneficial-- however not enough sessions so I hope that another one will pop up in the near future>
I have to admit that my prayers ALWAYS ask for baby steps of improvement and I cant ask for more-- in that respect I have to say 2010 was OK.Every day we can get up and muddle thru without incident is a day I want to cheer. If it is a day with incident as long as it can be managed or is less than awful ya gotta cheer, too!
Its really about just being thankful for life not being anymore complicated than it is..... Kinda the old adage that "when life hands you lemons you make lemonade" BUT you gotta add the sugar!
So many things swirling around in my head yet I question the importance to others who might read this.I guess the real purpose of a blog is to express whatever you think or feel and not to be concerned with the "observers".
Looking back at "a year in a glance" there were many ups and downs . We lost a very important component to Dakota's independence and that was huge-- His friend,coach and mentor Brad Loula died in his sleep last June.The hardest part about his passing is the residual effect that it potentially has on Dakota--Autism is a very strange "animal" when it comes to emotion and feelings. Perhaps even the issues that we have had just recently could be Dakota feeling the loss from so many months ago and they are just now surfacing.
As for behaviors that too has been somewhat of a roller coaster. He has been having extreme highs and lows with several aspects of life. He had been attending a program specifically for Autism and somewhere things went sideways and he was lashing out at the person who was working with him so we have temporarily discontinued the program till he seems ready and accepting of trying again.
Add to that the extreme emotional acting out that has been on going for the past year -- it is continuing BUT I have to admit that it has drastically calmed down and in fact I have made some in-roads to acknowledge it and even discuss with Dakota about recognizing it and handling it --The occurrence level seems to be reducing. He and I continue to do the dance around the hair twisting and if I have not written and except about this I will -- although I know it has been an ongoing problem for several years-- since he broke his leg---AGAIN i will give him credit I have seen improvement in this area also;so I guess I have a lot to be happy about!
Dakota did take a "Get up and Move" Dance class that was very beneficial-- however not enough sessions so I hope that another one will pop up in the near future>
I have to admit that my prayers ALWAYS ask for baby steps of improvement and I cant ask for more-- in that respect I have to say 2010 was OK.Every day we can get up and muddle thru without incident is a day I want to cheer. If it is a day with incident as long as it can be managed or is less than awful ya gotta cheer, too!
Its really about just being thankful for life not being anymore complicated than it is..... Kinda the old adage that "when life hands you lemons you make lemonade" BUT you gotta add the sugar!
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