Sometimes when you post on a blog and especially when you talk about living with something like Autism {which it is NOT exclusive to that diagnosis}it is difficult to find positive things to write about---
Its always about the strife of dealing with either an agency or and individual or the "system" much less the demons that your child fights every day!
But today and for the past few weeks I have had a few moments where I felt good, saw progress and can even say was hopeful.
Specifically with Autism you hear over and over about early intervention and how important it is to get these kids started because with Autism there is a huge amount of "fodder" about them loosing skills or never attaining skills if you don't hit them hard early on. Also the other lament you hear quite frequently is that from puberty on there has been lots of documentation about our kids loosing or reversing much of their progress. So as those young adult years approach I think most of us watch with a keen eye to identify any losses and do whatever we can to halt it--
I can honestly say that pretty much every night I pray for miracles --If not miracles then even baby steps that continue to show improvement and/or growth. So far; knock on wood Dakota has continued to grow and improve on many levels--Look its no miracle but its improvement--AND it does render peace in my heart to know he is continuing to work his brain and learn things that others take for granted.
To highlight the most recent "baby steps"
He used the word MONOTONOUS correctly in a sentence----
He was watching a news feed where a lady was standing in front of a school reporting a story and a partial view of the school mascot was on the wall behind her and he said "look Mom there's a Jaguar"
He picked up on the word Philanthropy and he started to pronounce it a couple of times and then said "whats philanthropy?" I about fell out of my chair-- so I spelled and I gave him a rough definition and he listened intently and acknowledged me--
now whether he has any use for any of these things I don't know BUT the simple fact that he continues to pull these things out of his head tells me he is still growing and learning and that gives me HOPE!
Friday, March 16, 2012
Sunday, March 4, 2012
You Can't Put a Cast on His Head!
I think the title says it all--- over the course of this journey thoughts fill my head probably on an hourly basis-- getting to the computer and posting them is another battle in and of itself. This is one of those thoughts I have had probably a hundred times; just never got the time to write about it.
Years ago, Dakota broke his leg and we struggled with all the ramifications about it including it happening at school and he didn't want to go back , the fear that he would break his other leg , the scars from the surgery,the ambulance and hospital etc. etc. Ultimatley the end result was that his leg would mend and he would be 'ALMOST" AS GOOD AS NEW. That being said the end result was less than perfect but it served the purpose a leg was designed to do on the human body.
The leg was pretty much a mess; a compound fracture which required surgery and rods and pins and a CAST. When a person who has a cast on goes out in public it evokes mostly positive empathetic / compassionate responses--people see it and they respond by either sharing their own experience or with well wishes for their temporary disability -----------
When a person walks out in public with an intellectual or developmental disability----It is a different story--the looks, the jeers, the judgement the lack of acceptance.
Personally I don't get the difference but its probably because I live in a world where Autism is present every minute of every day. I see it being no different than a broken leg in one way--neither malady was intended.
When some one suffers a mental disorder most the world has a hard time accepting it; treating it the same way as a broken leg-- Look I CANNOT PUT A CAST ON HIS HEAD! Mental,Intellectual or Developmental disabilities are viewed as taboo. People are scared of them and in many cultures it is an embarrassment or often considered a curse--Those people who suffer with those types of disorders are kept behind closed doors, institutionalized or worse even abandoned or killed.
We cannot ask a doctor to drill into the brain and fix it--true it is an area we don't how to handle or what to do. Fhere has been 100's of years of study about mental disorders but it remains in my opinion the most difficult to diagnose and certainly the one most illusive to fix or even repair. Short of therapy {for those who can participate} and DRUGS we cannot go in an transplant a brain , we cant remove the affected area {like slicing off a part of a liver and letting it regenerate } and most of all we CANNOT PUT A CAST ON THE "broken part of the brain".
It will be light years and most certainly long after Dak and I have left this existence before there will be any solutions to things I have written about; I can only hope that my continued griping about awareness and acceptance will filter thru to at least a few. To plant the seed that Autism and many other mental disorders are not the fault of the person and that they are like any other human living on this earth. All they want is to be loved and accepted as a part of the patchwork in any Family and/or community.
Stop and think before you make a judgement -- remember you have your own "warts" and maybe the person you are making an opinion on, needs a CAST OF THEIR HEAD!
Years ago, Dakota broke his leg and we struggled with all the ramifications about it including it happening at school and he didn't want to go back , the fear that he would break his other leg , the scars from the surgery,the ambulance and hospital etc. etc. Ultimatley the end result was that his leg would mend and he would be 'ALMOST" AS GOOD AS NEW. That being said the end result was less than perfect but it served the purpose a leg was designed to do on the human body.
The leg was pretty much a mess; a compound fracture which required surgery and rods and pins and a CAST. When a person who has a cast on goes out in public it evokes mostly positive empathetic / compassionate responses--people see it and they respond by either sharing their own experience or with well wishes for their temporary disability -----------
When a person walks out in public with an intellectual or developmental disability----It is a different story--the looks, the jeers, the judgement the lack of acceptance.
Personally I don't get the difference but its probably because I live in a world where Autism is present every minute of every day. I see it being no different than a broken leg in one way--neither malady was intended.
When some one suffers a mental disorder most the world has a hard time accepting it; treating it the same way as a broken leg-- Look I CANNOT PUT A CAST ON HIS HEAD! Mental,Intellectual or Developmental disabilities are viewed as taboo. People are scared of them and in many cultures it is an embarrassment or often considered a curse--Those people who suffer with those types of disorders are kept behind closed doors, institutionalized or worse even abandoned or killed.
We cannot ask a doctor to drill into the brain and fix it--true it is an area we don't how to handle or what to do. Fhere has been 100's of years of study about mental disorders but it remains in my opinion the most difficult to diagnose and certainly the one most illusive to fix or even repair. Short of therapy {for those who can participate} and DRUGS we cannot go in an transplant a brain , we cant remove the affected area {like slicing off a part of a liver and letting it regenerate } and most of all we CANNOT PUT A CAST ON THE "broken part of the brain".
It will be light years and most certainly long after Dak and I have left this existence before there will be any solutions to things I have written about; I can only hope that my continued griping about awareness and acceptance will filter thru to at least a few. To plant the seed that Autism and many other mental disorders are not the fault of the person and that they are like any other human living on this earth. All they want is to be loved and accepted as a part of the patchwork in any Family and/or community.
Stop and think before you make a judgement -- remember you have your own "warts" and maybe the person you are making an opinion on, needs a CAST OF THEIR HEAD!
Sunday, February 26, 2012
My Heart Hurt Yesterday
Saturdays in general have been challenging for the past several years BUT yesterday hurt. It wasn't that it was so much more intense than other Saturdays I think it was more the realization of helplessness I felt when I cant make his "hurting" go away.
Saturday's are transitional days for Dak --- because of his heavy reliance on schedules and routines especially with television along with other factors, He often times has behavioral issues. Sometimes it is sadness. Other times it can escalate all the way to physical aggression. As I have described many times before it is like the static in his head overwhelms his ability to think out his choices or options which in turn, CAN change him into a raving maniac{AND I say that with the greatest LOVE} It is as if he cannot calm the fire storm in his head so his body rebels. He can growl and shout. He can grab or even try to hit himself, on occasion he will try to grab my arm/hand and try to slap or hit himself. I have no fear because his intent is to rid the noise in his head and the simple fact that his motor skill level is not that of a trained fighter --its not like he can land a punch its more about the flailing of the body. I have said many times I probably could hurt him more than he could hurt me and I approach all inter action with that acute awareness. I must admit being a "typical thinker" it is extremely difficult not to react to someone who is in a "physical mode" BUT he is my baby and I could never ...Well I just cant even think about it-- I can only say that no matter who it is; when someone attempts to come at you even with the purest motives or the knowledge that they have a mental impairement you have to have the mental fortitude to quash the innermost feelings of survival AND NOT RETALIATE. In Fact it has been my experience and has been what yields the best result most of the time is to walk away. Leave the room , allow whatever is happening to just "let the air out of the balloon" . I know many of you may not have that option because you need to monitor self injurious behavior BUT when its possible its worth a try-- {If they are in a safe environment}
When I feel Dak needs someones presence during these episodes I will simply sit on the edge of the bed or in the room and just not say anything--just be there and try to express in my eyes and body language that I am there and I will be there even as mad as he is...........
Yesterday was really no different than many other "Saturday Blow outs" what was different was my epiphamy that came later in the day--Dak was more sorrowful than usual yesterday and he even changed many of the things he usually "requires be accomplished even on a Saturday " {which has happened before} BUT he was really displaying emotion the crying had purpose it was not just a product of the ranting, he seemed to be trying to tell me something and he even layed down and fell asleep requiring me to be right by his side . Even tho he was asleep and I mean deep breathing the minute I moved he stirred-- "Mommy where ya goin?" He needed me and I knew that the only thing I could do was just cave into the need.The rest of the day could go to hell -- My kid needed me and he needed me to set aside what ever the rest of the day had planned . I have no reservations about that -- because you see he did not ask to be born and he certainly did not ask to be born with Autism or any other kind of disorder so the least I can do for him is be the best Mom I know how . To hell with the rest of the world.
OK so here's the crux of the title-- My Heart Hurt Yesterday, after the whole thing was over and things resumed to what we call "normal" in our home these thoughts flowed over me like a soft waterfall. I FEEL that PERHAPS the Saturday thing is more about separation; not a break in routine--- and I may be totally wrong but that's what came to me last night. Dak often does something with his Dad on Saturday and although I know he looks forward to that activity I wonder if he is experiencing a fear not a change. In retrospect the saddness was deeply emotional and it was fearful . Although he can express himself his words are limited to HIS dialogue{ he talks about what he wants to talk about} . When I attempted to ask him what was bothering him or why he was so sorrowful he retreated into his "communication shell" . I guess what this whole article is about was how emotional it made me because I could not resolve his sorrow.
I always want him to feel safe with me and to know I will always protect him as fiercely as a Mother bear. My heart hurt yesterday because my son could not tell me what made him so sad. I will go on observing and assessing to do the best job I can with the hope that someday he will break from his shell and tell me how I can make LIFE better for him.
Saturday's are transitional days for Dak --- because of his heavy reliance on schedules and routines especially with television along with other factors, He often times has behavioral issues. Sometimes it is sadness. Other times it can escalate all the way to physical aggression. As I have described many times before it is like the static in his head overwhelms his ability to think out his choices or options which in turn, CAN change him into a raving maniac{AND I say that with the greatest LOVE} It is as if he cannot calm the fire storm in his head so his body rebels. He can growl and shout. He can grab or even try to hit himself, on occasion he will try to grab my arm/hand and try to slap or hit himself. I have no fear because his intent is to rid the noise in his head and the simple fact that his motor skill level is not that of a trained fighter --its not like he can land a punch its more about the flailing of the body. I have said many times I probably could hurt him more than he could hurt me and I approach all inter action with that acute awareness. I must admit being a "typical thinker" it is extremely difficult not to react to someone who is in a "physical mode" BUT he is my baby and I could never ...Well I just cant even think about it-- I can only say that no matter who it is; when someone attempts to come at you even with the purest motives or the knowledge that they have a mental impairement you have to have the mental fortitude to quash the innermost feelings of survival AND NOT RETALIATE. In Fact it has been my experience and has been what yields the best result most of the time is to walk away. Leave the room , allow whatever is happening to just "let the air out of the balloon" . I know many of you may not have that option because you need to monitor self injurious behavior BUT when its possible its worth a try-- {If they are in a safe environment}
When I feel Dak needs someones presence during these episodes I will simply sit on the edge of the bed or in the room and just not say anything--just be there and try to express in my eyes and body language that I am there and I will be there even as mad as he is...........
Yesterday was really no different than many other "Saturday Blow outs" what was different was my epiphamy that came later in the day--Dak was more sorrowful than usual yesterday and he even changed many of the things he usually "requires be accomplished even on a Saturday " {which has happened before} BUT he was really displaying emotion the crying had purpose it was not just a product of the ranting, he seemed to be trying to tell me something and he even layed down and fell asleep requiring me to be right by his side . Even tho he was asleep and I mean deep breathing the minute I moved he stirred-- "Mommy where ya goin?" He needed me and I knew that the only thing I could do was just cave into the need.The rest of the day could go to hell -- My kid needed me and he needed me to set aside what ever the rest of the day had planned . I have no reservations about that -- because you see he did not ask to be born and he certainly did not ask to be born with Autism or any other kind of disorder so the least I can do for him is be the best Mom I know how . To hell with the rest of the world.
OK so here's the crux of the title-- My Heart Hurt Yesterday, after the whole thing was over and things resumed to what we call "normal" in our home these thoughts flowed over me like a soft waterfall. I FEEL that PERHAPS the Saturday thing is more about separation; not a break in routine--- and I may be totally wrong but that's what came to me last night. Dak often does something with his Dad on Saturday and although I know he looks forward to that activity I wonder if he is experiencing a fear not a change. In retrospect the saddness was deeply emotional and it was fearful . Although he can express himself his words are limited to HIS dialogue{ he talks about what he wants to talk about} . When I attempted to ask him what was bothering him or why he was so sorrowful he retreated into his "communication shell" . I guess what this whole article is about was how emotional it made me because I could not resolve his sorrow.
I always want him to feel safe with me and to know I will always protect him as fiercely as a Mother bear. My heart hurt yesterday because my son could not tell me what made him so sad. I will go on observing and assessing to do the best job I can with the hope that someday he will break from his shell and tell me how I can make LIFE better for him.
Monday, February 20, 2012
Daks Open Door on Facebook
I have now developed a page on Facebook under the same name
Daks Open Door-- this is just to try to spread more awareness and find more people who can help me as much as I want to help others -- In the future I will be X"cross" posting some of my little thoughts--Please feel free to add any input you have--
The first 6 or 7 weeks of 2012 have been lets say a challenge! One thing that keeps going around in my head is that those of you who do visit this page will always want support, praise and acknowledgement. I know If you live with Autism your life is not simple--- There is no formula! The one thing that has always remained true to me is "Go with Your Gut". Disreguard other peoples judgement on your life and your families life and do what is right for you. No One; even others who live with Autism do not know the particulars of your day to day lliving. It is imparative that you find the joy and freedom of what is comfortable for you, your child and the rest of your family!
Daks Open Door-- this is just to try to spread more awareness and find more people who can help me as much as I want to help others -- In the future I will be X"cross" posting some of my little thoughts--Please feel free to add any input you have--
The first 6 or 7 weeks of 2012 have been lets say a challenge! One thing that keeps going around in my head is that those of you who do visit this page will always want support, praise and acknowledgement. I know If you live with Autism your life is not simple--- There is no formula! The one thing that has always remained true to me is "Go with Your Gut". Disreguard other peoples judgement on your life and your families life and do what is right for you. No One; even others who live with Autism do not know the particulars of your day to day lliving. It is imparative that you find the joy and freedom of what is comfortable for you, your child and the rest of your family!
Sunday, February 5, 2012
OCD---
Lots of people have different ideas about what OCD is-- Obsessive Compulsive Disorder--
In My Humble Opinion I believe this is quite common because it manifests in individuals in different ways-- Many have repetitive behaviors others are "hard wired" to a routine or schedule- - - - I got the chance one time to have a thoughtful conversation with and otherwise "typical" person who was diagnosed with OCD--
We had been discussing a little boy who was absolutely insistent about going down a slide 3 TIMES in the park where his brother played soccer EVERY TIME. Rain or snow noon or midnight this kid would not get in the van unless he was allowed to slide--The parents were having a big problem with it mainly because they did not understand the behavior but also because there was concern over health and well being by factors like temperature or appropriate lighting etc... the person I was talking to was almost shocked at the parents behavior because she totally understood the actions of this little boy . She described like this; In this little ones head it is the same as a superstition. for this boy if he did not slide down the slide 3 times something bad would happen to him or his family. She was so matter a fat about it and explained that barring "self injurious" behavior it was bordering on cruel for the parents not to indulge him.
I understand the need to guide your children and make decisions and choices for their well being and sometimes to try to shift away from this type of behavior. Our kids need to "melt" into the existing world where most people have little or no tolerance for anyone who is "different" however everyone of us is unique . There comes a point to make a decision whether we will just let this OCD prevail or try to quash it.
My personal opinion is if it is a benign behavior like sliding down a slide 3 times -0- whats the problem -- if it is invasive of other peoples space or it can be harmful then you need to re-assess. There are medications and as well as therapies that can help and sometimes the behavior will run its course --For our situation I have found that if I indulge Dak his one "obsession" at the onset of the day that the rest of the day is much easier-and sometimes I can him to do things he wouldn't ordinarily do -- Its a great pay off !
In My Humble Opinion I believe this is quite common because it manifests in individuals in different ways-- Many have repetitive behaviors others are "hard wired" to a routine or schedule- - - - I got the chance one time to have a thoughtful conversation with and otherwise "typical" person who was diagnosed with OCD--
We had been discussing a little boy who was absolutely insistent about going down a slide 3 TIMES in the park where his brother played soccer EVERY TIME. Rain or snow noon or midnight this kid would not get in the van unless he was allowed to slide--The parents were having a big problem with it mainly because they did not understand the behavior but also because there was concern over health and well being by factors like temperature or appropriate lighting etc... the person I was talking to was almost shocked at the parents behavior because she totally understood the actions of this little boy . She described like this; In this little ones head it is the same as a superstition. for this boy if he did not slide down the slide 3 times something bad would happen to him or his family. She was so matter a fat about it and explained that barring "self injurious" behavior it was bordering on cruel for the parents not to indulge him.
I understand the need to guide your children and make decisions and choices for their well being and sometimes to try to shift away from this type of behavior. Our kids need to "melt" into the existing world where most people have little or no tolerance for anyone who is "different" however everyone of us is unique . There comes a point to make a decision whether we will just let this OCD prevail or try to quash it.
My personal opinion is if it is a benign behavior like sliding down a slide 3 times -0- whats the problem -- if it is invasive of other peoples space or it can be harmful then you need to re-assess. There are medications and as well as therapies that can help and sometimes the behavior will run its course --For our situation I have found that if I indulge Dak his one "obsession" at the onset of the day that the rest of the day is much easier-and sometimes I can him to do things he wouldn't ordinarily do -- Its a great pay off !
Sunday, January 29, 2012
Not A New Years Resolution!!!!!
Over the course of the first weeks of this year I have had a couple of "discussions" via email with Moms who have had specific issues which I believe should be posted here. I am quite sure if you go back among the already existing posts you may find similar subjects but I am convinced that these subjects bare repeating......
Both of these are subjects that I would not consider to be "resolutions" but more a promise to yourself to not get sucked up into other peoples opinions and observations about your child and his good or negative behavior.
The first is IEP's and the IEP team and the way you pour your heart into these events and come out drained , emotional and for the most part feeling defeated-- If I could advise any parent only one thing it would be this;
I went thru so many years of IEP's and I swear it took more of a toll on me than caring for my son--One thing that kept me going was I knew I was his voice and whether they liked it or not . I was a part of the IEP team and my input weighed as heavily if not more heavily than all the others combined--
Stand up for all you believe in and do not give in--BUT remember that its only a small part of your childs life.
Come 22 and he exits there is still a lot of living left . The transition services--SUCK There is nothing out there right now-----These kids have a typical life expectancy and they will be in the community far longer than the time that they spend in school
I guess what I am saying is "perspective' Don't let those school numb heads get to you I am sorry for all the tears and stress I put myself thru only to realize that all I fought for was gone once school was no longer a part of his life.
If I had the opportunity to give additional information on my experience
It would be this
We have to remember that these kids disability is their behavior When someone, anyone who is a part of the team that is involved with your child reacts in a way that does not " sit right " with you -- DO NOT dismiss it as you being to sensitive "GO WITH YOUR GUT" If your child develops behavior in a new setting don't always blame the Autism --look at the people and environment SOMETHING has changed--I certainly am not saying that a person or persons are bad or mistreating what I am saying is there is potential for a "mis-match" Not every person can get along or like every other person and sometimes that can make all the difference in a therapy or a program or a class. Do not be apprehensive to change the sooner you do it the sooner you will get {hopefully} more positive behavior and results not to mention your child will more at ease...
So for now these are things that I want to leave you with--I am not a resolution type of a girl but I think realizing all the mistakes I made over the years -- Trying to give small purview to my experience may help someone else> For Now no resolutions just promises ---to yourself to keep a keen eye and a peaceful frame of mind when you are helping your Autistic Individual.
Both of these are subjects that I would not consider to be "resolutions" but more a promise to yourself to not get sucked up into other peoples opinions and observations about your child and his good or negative behavior.
The first is IEP's and the IEP team and the way you pour your heart into these events and come out drained , emotional and for the most part feeling defeated-- If I could advise any parent only one thing it would be this;
I went thru so many years of IEP's and I swear it took more of a toll on me than caring for my son--One thing that kept me going was I knew I was his voice and whether they liked it or not . I was a part of the IEP team and my input weighed as heavily if not more heavily than all the others combined--
Stand up for all you believe in and do not give in--BUT remember that its only a small part of your childs life.
Come 22 and he exits there is still a lot of living left . The transition services--SUCK There is nothing out there right now-----These kids have a typical life expectancy and they will be in the community far longer than the time that they spend in school
I guess what I am saying is "perspective' Don't let those school numb heads get to you I am sorry for all the tears and stress I put myself thru only to realize that all I fought for was gone once school was no longer a part of his life.
If I had the opportunity to give additional information on my experience
It would be this
We have to remember that these kids disability is their behavior When someone, anyone who is a part of the team that is involved with your child reacts in a way that does not " sit right " with you -- DO NOT dismiss it as you being to sensitive "GO WITH YOUR GUT" If your child develops behavior in a new setting don't always blame the Autism --look at the people and environment SOMETHING has changed--I certainly am not saying that a person or persons are bad or mistreating what I am saying is there is potential for a "mis-match" Not every person can get along or like every other person and sometimes that can make all the difference in a therapy or a program or a class. Do not be apprehensive to change the sooner you do it the sooner you will get {hopefully} more positive behavior and results not to mention your child will more at ease...
So for now these are things that I want to leave you with--I am not a resolution type of a girl but I think realizing all the mistakes I made over the years -- Trying to give small purview to my experience may help someone else> For Now no resolutions just promises ---to yourself to keep a keen eye and a peaceful frame of mind when you are helping your Autistic Individual.
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