Funny how fast the days blend onto weeks and months ...I cannot believe its already time for Autism Awareness Month...Not that it is any different than another ..just gives many of us an excuse or reason to highlight what we know and how we can educate others on autism! Will try to be diligent on posting Lil thoughts most especially this month and imagine that it's already the 8 th...YIKES
Monday, April 8, 2013
Saturday, March 9, 2013
Growth????
I have always told others who are in similar situations its a matter of the moment that you are in that dictates your perspective, actions, thoughts and emotions. I am quite sure that this true in the typical world for most people whether it is raising and rearing children or just people trying to muddle through life....However I do believe that when it comes to children it seems to be magnified simply because the added responsibility of how that "being",which is a part of you, projects and portrays him or her self to the world. Add to that there comes a time when most , NOT ALL, are ready to leave the nest ..... There's always that wonder and worry " will they be able to make it.." " how will they handle this or that situation." "Do I rescue them if and when the time comes? "
With our kids we ask our selves similar questions usually in a delayed state but overwhelmingly the questions from friends , family and even strangers is almost always " will they (our children) ever be able to be on their own?" "Will they grow out of this." HONESTLY there is no pat answer and for the most part it is a wait and see stance we take with cautious optimism that our greatest fears will never come to fruition..That they will always need care ...
There are all kinds of things being done to "intercept" Autism mostly with what is called Early Intervention Programs which just like everything else has its positive points yet still bears no real solid stats to prove or disprove its effectiveness. Add to that the wide spectrum of Autism it's all just a guessing game..don't mean to be a Debby Downer ....every kid is a different "bag of tricks" and we have to search for what works in each individual case.
Personal experience bears this out, I have seen and also know of numerous kids who have had "growth spurts" ( not of the physical kind ) at ages 7, 9, and 11. Once puberty hits the horizon not only is it pure hell on earth magnified 1000 times by Autism BUT it is also time time where we sweat bullets because it is known for a time when many Autistics revert . Many books, studies and parental observations have been written, how our kids lose a lot of what they have learned, can sometimes develop other maladies like seizures or other disorders worst of all they start going backwards developmentally.
Luckily for Dak we haven't had this experience .Although he is much more intelligent than we can prove on paper and appears to be communicatively awkward there is so much more I. There than most anyone gives him a chance to display...THAT'S OK Living with him 24/7 gives me a little broader view of what's going on in that head of his because it gives me opportunities to see the genial nuances of "lurks" in that brain of his...and certainly a way for me to ascertain his "growth spurts" .Once and autistic person hits puberty it's almost always considered an apex for learning and therapies...Try to get funding for programs or insist that you believe they can still benefit from interventions and you literally get laughed out the room . And try to tell someone at his age that he is experiences another growth spurt they might as well put a Jesters Hat on me and tell me to entertain the king and his court!
What I will say is just that, and laugh all you will , question my ability to recognize this type of progress, tell me I am crazy or imagining it or that because I am a mother just desperate to wish my son more progress that I am manufacturing it ....I DON'T GIVE A DAMN because I know what I see and what I hear....I am seeing another brain growth spurt...right now and for the passed several weeks. I will bore you with specific examples ..questioning bout words he has heard and wanting to know more about then ..when he never did before, reciting lines for a movie that he hasn't seen in 10 years , even more expressive language and his ability to speak an opinion or even say a sentence about wanting to do something where before it was more of a grunt or a physical reaction.
It's not rocket science and the fact still remains that he will need someone around most of the time for the rest of his life but it doesn't mean he should not be giving accolades when he is continuing to grow . Even more important is the message I am trying send to others which is Never Give Up and Never Give Up Hope...Don't let others talk you down from your stance when you know what you have seen or heard. It does happen and it can make a difference for your child's life because eventually someone will have to listen to your barking ....If you see GROWTH ; talk about it,document it and insist that whether some one listens or does anything about it THAT IT STILL EXISTS!
With our kids we ask our selves similar questions usually in a delayed state but overwhelmingly the questions from friends , family and even strangers is almost always " will they (our children) ever be able to be on their own?" "Will they grow out of this." HONESTLY there is no pat answer and for the most part it is a wait and see stance we take with cautious optimism that our greatest fears will never come to fruition..That they will always need care ...
There are all kinds of things being done to "intercept" Autism mostly with what is called Early Intervention Programs which just like everything else has its positive points yet still bears no real solid stats to prove or disprove its effectiveness. Add to that the wide spectrum of Autism it's all just a guessing game..don't mean to be a Debby Downer ....every kid is a different "bag of tricks" and we have to search for what works in each individual case.
Personal experience bears this out, I have seen and also know of numerous kids who have had "growth spurts" ( not of the physical kind ) at ages 7, 9, and 11. Once puberty hits the horizon not only is it pure hell on earth magnified 1000 times by Autism BUT it is also time time where we sweat bullets because it is known for a time when many Autistics revert . Many books, studies and parental observations have been written, how our kids lose a lot of what they have learned, can sometimes develop other maladies like seizures or other disorders worst of all they start going backwards developmentally.
Luckily for Dak we haven't had this experience .Although he is much more intelligent than we can prove on paper and appears to be communicatively awkward there is so much more I. There than most anyone gives him a chance to display...THAT'S OK Living with him 24/7 gives me a little broader view of what's going on in that head of his because it gives me opportunities to see the genial nuances of "lurks" in that brain of his...and certainly a way for me to ascertain his "growth spurts" .Once and autistic person hits puberty it's almost always considered an apex for learning and therapies...Try to get funding for programs or insist that you believe they can still benefit from interventions and you literally get laughed out the room . And try to tell someone at his age that he is experiences another growth spurt they might as well put a Jesters Hat on me and tell me to entertain the king and his court!
What I will say is just that, and laugh all you will , question my ability to recognize this type of progress, tell me I am crazy or imagining it or that because I am a mother just desperate to wish my son more progress that I am manufacturing it ....I DON'T GIVE A DAMN because I know what I see and what I hear....I am seeing another brain growth spurt...right now and for the passed several weeks. I will bore you with specific examples ..questioning bout words he has heard and wanting to know more about then ..when he never did before, reciting lines for a movie that he hasn't seen in 10 years , even more expressive language and his ability to speak an opinion or even say a sentence about wanting to do something where before it was more of a grunt or a physical reaction.
It's not rocket science and the fact still remains that he will need someone around most of the time for the rest of his life but it doesn't mean he should not be giving accolades when he is continuing to grow . Even more important is the message I am trying send to others which is Never Give Up and Never Give Up Hope...Don't let others talk you down from your stance when you know what you have seen or heard. It does happen and it can make a difference for your child's life because eventually someone will have to listen to your barking ....If you see GROWTH ; talk about it,document it and insist that whether some one listens or does anything about it THAT IT STILL EXISTS!
Tuesday, February 5, 2013
Hamster in a wheel
I posted the other day on Facebook that sometimes I feel like a Hamster in a wheel... I cannot seem to see the light at the end of the tunnel and that for the rest of my life everyday until I pass that I will be helping care for Dakota ...AND sometimes that exhausts my mind,.it frustrates me , and yes sometimes even pisses me off....Not as a resentment toward Dakota but just as an overwhelming thought of helplessness and in ability to have any control over the situation. By the grace of GOD I am not a controlling type of personality and that one thing has helped me thru.
When we have these children and eventually get a diagnosis one of the first questions we ask ourselves and then others will ask quite often is "will he be able to take care of himself" ...at what age should you start seeing these abilities... and day after day , month after month , year after year , as they go by you keep that lamp lit and keep hoping that things will develop .... Every tiny step is a blessing and you continue to hang on to hope that maybe just maybe he will burst out in flames and he will do things like we never expected. Of course as the years go by you set your expectations aside and keep plugging away and continue to be Thankful for any progress [especially during puberty}
When the school finally exits your child having done a lot less than promised or expected and you have sat for hours on end reading, playing, teaching and the 20's roll around you really start re assessing... Don't get me wrong I will never give up BUT you have to start re evaluating whats been done and what can be done.... also by this time the child is no longer child in most aspects yet hes not like a typical kid and cannot be treated that way ether.
The most prominent thing I have noticed is that he is more and more set in his ways and is much more resistant to change ..PERIOD.I don't think I could have done anything differently and I will continue to challenge him to try something new ;but I have come to a place where I evaluate the the purpose and the reward vs. the fight to put a new thing into action. At this point in time I always ask is it worth him acting out , getting upset, crying, yelling etc etc just to have him experience something that I think is good for him when he clearly doesn't have the interest or understanding???Again I will not give up but I make sure that if I am going to push his limitations It better have a profound benefit to HIM and not me or anyone else. Why make his world any more stressful than it already is... Can you imagine living with a woodpecker tapping at your skull day in and day out and then someone asks you to stand near a chainsaw all day???
I guess the whole point of this post is to vent {a lot} and speak to others who live in the same situation to let them know they are not alone ... one of my friends on Facebook merely said its not that you cant see the light at the end of the tunnel its just that the tunnel has a bend and you are not around it yet....We all need help and we all need to know to ask for help . So many of us just don't ....
When we have these children and eventually get a diagnosis one of the first questions we ask ourselves and then others will ask quite often is "will he be able to take care of himself" ...at what age should you start seeing these abilities... and day after day , month after month , year after year , as they go by you keep that lamp lit and keep hoping that things will develop .... Every tiny step is a blessing and you continue to hang on to hope that maybe just maybe he will burst out in flames and he will do things like we never expected. Of course as the years go by you set your expectations aside and keep plugging away and continue to be Thankful for any progress [especially during puberty}
When the school finally exits your child having done a lot less than promised or expected and you have sat for hours on end reading, playing, teaching and the 20's roll around you really start re assessing... Don't get me wrong I will never give up BUT you have to start re evaluating whats been done and what can be done.... also by this time the child is no longer child in most aspects yet hes not like a typical kid and cannot be treated that way ether.
The most prominent thing I have noticed is that he is more and more set in his ways and is much more resistant to change ..PERIOD.I don't think I could have done anything differently and I will continue to challenge him to try something new ;but I have come to a place where I evaluate the the purpose and the reward vs. the fight to put a new thing into action. At this point in time I always ask is it worth him acting out , getting upset, crying, yelling etc etc just to have him experience something that I think is good for him when he clearly doesn't have the interest or understanding???Again I will not give up but I make sure that if I am going to push his limitations It better have a profound benefit to HIM and not me or anyone else. Why make his world any more stressful than it already is... Can you imagine living with a woodpecker tapping at your skull day in and day out and then someone asks you to stand near a chainsaw all day???
I guess the whole point of this post is to vent {a lot} and speak to others who live in the same situation to let them know they are not alone ... one of my friends on Facebook merely said its not that you cant see the light at the end of the tunnel its just that the tunnel has a bend and you are not around it yet....We all need help and we all need to know to ask for help . So many of us just don't ....
Thursday, January 17, 2013
My Observation about Mental Health and guns....
I am a professed die hard Liberal Democrat and do not make ant excuses oer explanations ...
That being set aside with all the chatter about gun control and the question of Mental Health being a component, as a parent/caregiver I feel that REGARDLESS of my political persuasion I have a few valid points to be talked about... about 75% of these horrendous mass shootings are white males from the early teens to their 30's.. Of those over 60% to 75% had a history of mental health issues... That is scary. What is even more scary is that in some ways we have an element of responsibility,,,WHY you ask??????
For 26 years I have dealt with professionals and medical personnel working,observing, studying or diagnosing Dakota .... The first line of defense or discussion is MEDS... No one wants to work with these kids, spend real time with them , totally understand them and do what it takes to actually help or TRY to help most of these kids.
LET ME BE REALLY CLEAR ... I don't not condone this behavior , I do not think all offenders are in the same category as individuals with disabilities, BUT I do believe that the majority of them have been lost in the system or "shuffled of to buffalo" when it came to doing anything of substance for them!
Look, parents are not totally innocent and as the last horrific incident in Sandy Hook, Connecticut has unraveled , we are finding out that this kids had problems recognized by his parents who did not address them properly BUT also a Mother who was an active gun enthusiast so it was the perfect storm for disaster to strike.... What I am saying is that parents every day talk to teachers, psychologist, doctors, therapist, social workers, administrators who routinely don't have any answers, don't want to cooperate with with the parents and what they want to do for their kids, Ignore the kids , the kids get lost among all the other kids needing help, they are discounted as being someone who will "never amount to anything"11so why bother and "lets give them meds so they will cooperate in the classroom until they can be exited with a "Certificate of Completeion" not even a Diploma and then they are your problem not ours"...
Also highlighting parents who for the most part either have lost their ability to fight anymore . they are overwhelmed with other children in the family, their own medical needs, jobs, bills several just give up and give in....There are also those parent who have kids that manages to circulate in the mainstream of school for the most part and get by while the parents are caught up in "Keeping up with the Jones".... They are more worried about buying the next new SUV or boat, where they are gonna go for their next vacation. putting new furniture in the house or painting their house again cuz the neighbor just did....instead of truly realizing they have a kid that's on the edge... They are numb , they don't realize this child needs help and they probably don't even know how to get it or give it...
The reason I write this is because I have had personal dealings and involvement with all of these types of situations .. I do not judge or say whats right or wrong .. What I know is a recently as December I took Dakota to a medical Facility that has been treating him since birth, they know him , they know his diagnosis yet when he displays a little bit of aggression or behavior ....do they react like medical professionals should????Hell No they call security...IN A FACILITY THAT HAS TREATED HIM SINCE BIRTH???????? W T F
Is it any wonder that they individuals who have committed these unforgivable crimes killing innocent children and adults when the reaction from our own medical community is what I just described???/ AGAIN I AM NOT SAYING many are not guilty or even responsible for their actions what I am saying is people who are supposed to help situations by their training react like they are Joe Public right off the street .
I am all for letting some one possess a gun if the choose to .. I don't think they need and AK47 or a magazine that holds 10o's of bullets...and I do think that we need to regulate them to make sure people have a little sense and clean back ground... Do I think it will stop all of whats happening... NO BUT my lament is much more simple if adding Mental Health as a component to Gun Regulation prevents even ONE MORE FROM DYING then its the right thing to do.
That being set aside with all the chatter about gun control and the question of Mental Health being a component, as a parent/caregiver I feel that REGARDLESS of my political persuasion I have a few valid points to be talked about... about 75% of these horrendous mass shootings are white males from the early teens to their 30's.. Of those over 60% to 75% had a history of mental health issues... That is scary. What is even more scary is that in some ways we have an element of responsibility,,,WHY you ask??????
For 26 years I have dealt with professionals and medical personnel working,observing, studying or diagnosing Dakota .... The first line of defense or discussion is MEDS... No one wants to work with these kids, spend real time with them , totally understand them and do what it takes to actually help or TRY to help most of these kids.
LET ME BE REALLY CLEAR ... I don't not condone this behavior , I do not think all offenders are in the same category as individuals with disabilities, BUT I do believe that the majority of them have been lost in the system or "shuffled of to buffalo" when it came to doing anything of substance for them!
Look, parents are not totally innocent and as the last horrific incident in Sandy Hook, Connecticut has unraveled , we are finding out that this kids had problems recognized by his parents who did not address them properly BUT also a Mother who was an active gun enthusiast so it was the perfect storm for disaster to strike.... What I am saying is that parents every day talk to teachers, psychologist, doctors, therapist, social workers, administrators who routinely don't have any answers, don't want to cooperate with with the parents and what they want to do for their kids, Ignore the kids , the kids get lost among all the other kids needing help, they are discounted as being someone who will "never amount to anything"11so why bother and "lets give them meds so they will cooperate in the classroom until they can be exited with a "Certificate of Completeion" not even a Diploma and then they are your problem not ours"...
Also highlighting parents who for the most part either have lost their ability to fight anymore . they are overwhelmed with other children in the family, their own medical needs, jobs, bills several just give up and give in....There are also those parent who have kids that manages to circulate in the mainstream of school for the most part and get by while the parents are caught up in "Keeping up with the Jones".... They are more worried about buying the next new SUV or boat, where they are gonna go for their next vacation. putting new furniture in the house or painting their house again cuz the neighbor just did....instead of truly realizing they have a kid that's on the edge... They are numb , they don't realize this child needs help and they probably don't even know how to get it or give it...
The reason I write this is because I have had personal dealings and involvement with all of these types of situations .. I do not judge or say whats right or wrong .. What I know is a recently as December I took Dakota to a medical Facility that has been treating him since birth, they know him , they know his diagnosis yet when he displays a little bit of aggression or behavior ....do they react like medical professionals should????Hell No they call security...IN A FACILITY THAT HAS TREATED HIM SINCE BIRTH???????? W T F
Is it any wonder that they individuals who have committed these unforgivable crimes killing innocent children and adults when the reaction from our own medical community is what I just described???/ AGAIN I AM NOT SAYING many are not guilty or even responsible for their actions what I am saying is people who are supposed to help situations by their training react like they are Joe Public right off the street .
I am all for letting some one possess a gun if the choose to .. I don't think they need and AK47 or a magazine that holds 10o's of bullets...and I do think that we need to regulate them to make sure people have a little sense and clean back ground... Do I think it will stop all of whats happening... NO BUT my lament is much more simple if adding Mental Health as a component to Gun Regulation prevents even ONE MORE FROM DYING then its the right thing to do.
Friday, January 4, 2013
Happy New Year 2013
With every New Year we all seem to have a feeling of renewal , fresh starts and aspirations to do things differently ; Either for health mental or physical or as a way to make ourselves feel better about something that seems "not Right" to us.
As I explained in the last post, oh so long ago things have definitely been different around here and I to had given up on the notion of trying to change or alter life ...Things have been different yet all too much the same and it is something I have struggled with my whole life... I welcome the challenge and excitement of doing things differently yet the old demons of "sameness" follow me like a dark shadow ,,,accompanied by the whispers of disappointment when I don't do what I set out to do....As the years have rolled by I have become much more comfortable with myself and accomplishments, whether they happen or they don't and I would say that even those who know me sometimes wonder why I think and do the way I do...
Again I would say that Autism has kinda put me in this space...
If I have learned no other lesson it is that you can have a grand master plan but when you add autism into the equation the formula can turn into something completely different.That's not to say you don't try that's just to say that you have to be open to alternate outcomes.
So many I have known over the years have had such structure, determination and commitment .... to their daily lives and accomplishments , I admire that . For the last 26 years I have always said "But they don't have autism as a factor"... Thats not to say they don't have bumps in the road or things to overcome however again and again I continue to segregate my situation from theirs on that premise.
The holidays have a way of highlighting this thought process and execution. The last part of the year is always a festive time and everyone has plans, traditions and gatherings. You talk to people on the phone or exchange Christmas cards or even speak to someone passing you n the hall at work and the air is full of things to do . Having family over for Thanksgiving or going skiing for the first winters snow or everyone getting together for the Rose Parade and football game . Shopping, cooking , visiting Santa Claus, wrapping. church or whatever........
Sometimes when you have an individual with Autism IT JUST DOESN'T FLY...
I have said this many times before all you can do is present the opportunity ..its up to the individual to decide whether they take it. What you have to do is prepare yourself for the outcome. You have to be OK if it doesn't go the way you want it too.. You have to be OK to realize that the person in side the body that is plagued with this nasty disorder is doing the best they can and if you push {at least too much} it will turn ugly for you and it will be a nightmare for them.
So my friends I love you all and I know each of us have our own set of circumstances
We just have to March to the beat of our drum .... not someone elses!!!
Happy New Year
As I explained in the last post, oh so long ago things have definitely been different around here and I to had given up on the notion of trying to change or alter life ...Things have been different yet all too much the same and it is something I have struggled with my whole life... I welcome the challenge and excitement of doing things differently yet the old demons of "sameness" follow me like a dark shadow ,,,accompanied by the whispers of disappointment when I don't do what I set out to do....As the years have rolled by I have become much more comfortable with myself and accomplishments, whether they happen or they don't and I would say that even those who know me sometimes wonder why I think and do the way I do...
Again I would say that Autism has kinda put me in this space...
If I have learned no other lesson it is that you can have a grand master plan but when you add autism into the equation the formula can turn into something completely different.That's not to say you don't try that's just to say that you have to be open to alternate outcomes.
So many I have known over the years have had such structure, determination and commitment .... to their daily lives and accomplishments , I admire that . For the last 26 years I have always said "But they don't have autism as a factor"... Thats not to say they don't have bumps in the road or things to overcome however again and again I continue to segregate my situation from theirs on that premise.
The holidays have a way of highlighting this thought process and execution. The last part of the year is always a festive time and everyone has plans, traditions and gatherings. You talk to people on the phone or exchange Christmas cards or even speak to someone passing you n the hall at work and the air is full of things to do . Having family over for Thanksgiving or going skiing for the first winters snow or everyone getting together for the Rose Parade and football game . Shopping, cooking , visiting Santa Claus, wrapping. church or whatever........
Sometimes when you have an individual with Autism IT JUST DOESN'T FLY...
I have said this many times before all you can do is present the opportunity ..its up to the individual to decide whether they take it. What you have to do is prepare yourself for the outcome. You have to be OK if it doesn't go the way you want it too.. You have to be OK to realize that the person in side the body that is plagued with this nasty disorder is doing the best they can and if you push {at least too much} it will turn ugly for you and it will be a nightmare for them.
So my friends I love you all and I know each of us have our own set of circumstances
We just have to March to the beat of our drum .... not someone elses!!!
Happy New Year
Monday, November 12, 2012
I'm BACK!!!!!!
It seems all too often I have apologized for gap in my posting on this BLOG. I have come to realize that I will probably be apologizing many more times as this too is the nature of AUTISM.
Many who live in our world will say that every single kid with Autism is different and that is so true.. It is a peculiar and mysterious disorder and it makes you crazy and frustrated more than you can imagine. I think you develop a tougher exterior and emotional threshold as a defense mechanism. It also makes you mentally exhausted most of the time. That's a causality of the disorder......You are constantly trying to decode behavior , anticipate environment and analyze your child's actions. I cannot emphasize the word EXHAUSTING too much.
In our home things have been unusually out of sync for the passed several months and I have found that a little of the AUTISM has rubbed off on me... It's funny how it effects you even tho you are not the one that is Autistic. I have developed routines around Dakotas schedule and since he has been changing things it has become frustrating for me , as I had molded my own habits around his ...Oh what a tangled web we weave!!!!When he changes, then the time I have allotted to do something goes down the tubes then I find myself upset , thrown off kilter and scrambling to accommodate the change so I can get done what I needed or wanted to do. AND for the majority of time I find myself not accomplishing things ....hence the frustration.
This too , is a double edged sword because when you see your child welcoming change it is a positive experience , yet you always worry what the downside is... ANOTHER THING IHAVE WRITTEN ABOUT BEFORE about be careful what you wish for because when you see the diminishing of one behavior you can bet the bank that another one will replace it AND it could be worse.An example would be chewing or the finger replaced with twisting and pulling hair out of the scalp?????Gotta choice? I thought I knew what I was doin but here I am again with balding holes on his scalp and me flipping out about it...
Well once again the routine has changed and Dakota just came flying thru the door so it is time to close this down and get on with taking care of him...
I hope you will all stay tuned and NOT GIVE UP ON ME .. PLEASE know I will continue to post all I have to do find the time to sit down and compose!
Many who live in our world will say that every single kid with Autism is different and that is so true.. It is a peculiar and mysterious disorder and it makes you crazy and frustrated more than you can imagine. I think you develop a tougher exterior and emotional threshold as a defense mechanism. It also makes you mentally exhausted most of the time. That's a causality of the disorder......You are constantly trying to decode behavior , anticipate environment and analyze your child's actions. I cannot emphasize the word EXHAUSTING too much.
In our home things have been unusually out of sync for the passed several months and I have found that a little of the AUTISM has rubbed off on me... It's funny how it effects you even tho you are not the one that is Autistic. I have developed routines around Dakotas schedule and since he has been changing things it has become frustrating for me , as I had molded my own habits around his ...Oh what a tangled web we weave!!!!When he changes, then the time I have allotted to do something goes down the tubes then I find myself upset , thrown off kilter and scrambling to accommodate the change so I can get done what I needed or wanted to do. AND for the majority of time I find myself not accomplishing things ....hence the frustration.
This too , is a double edged sword because when you see your child welcoming change it is a positive experience , yet you always worry what the downside is... ANOTHER THING IHAVE WRITTEN ABOUT BEFORE about be careful what you wish for because when you see the diminishing of one behavior you can bet the bank that another one will replace it AND it could be worse.An example would be chewing or the finger replaced with twisting and pulling hair out of the scalp?????Gotta choice? I thought I knew what I was doin but here I am again with balding holes on his scalp and me flipping out about it...
Well once again the routine has changed and Dakota just came flying thru the door so it is time to close this down and get on with taking care of him...
I hope you will all stay tuned and NOT GIVE UP ON ME .. PLEASE know I will continue to post all I have to do find the time to sit down and compose!
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