Cognition in our children is often hard to measure or even detect...teachers,therapist and professionals will over and over again discourage you from having any hope that your children will communicate mush less UNDERSTAND...
In my Humble Opinion I say BS....perhaps that is because of my optimistic attitude but moreso because in our case with my son I KNOW...he understands. I also know that he cannot express his understanding a large part of the time. Additionally I would say that many times those who are around him often times just don't pay enough attention to what he does say to realize in his own way he is trying to have conversation.other times he tries to start conversation but people do not know how to engage with him....
I have witnessed so many situations where Dakota will be standing with a group of kids and they are all jabbering about a subject and Dakota will interject a statement that to the others they don't make the connection BUT I do...if they are talking about the month of April and he will say April 27 is on a Sunday this year.....trying to enter the conversation....I know that the 27 is when he experienced a traumatic event years ago so whenever he hears some one talk about April that is his way of working into the conversation . Now I know I cannot expect others and especially kids in his "circle" to totally get him, however it's been my experience that even the "professionals who are trained to work with Autistic individuals "are just as guilty and unprepared to engage Dakota either...
This is not a bitch session about others not recognizing the need to accommodate Dakota in conversation but more about people in general to take a minute , to stop and wonder why he said what he said or more importantly why he said it...So much of Dakotas language is extremely subtle.....so much of his life is decided for him but I really want him to be able to EXPRESS his needs wants and desires..if everyone shuts him down is it any wonder that he just gives up and won't talk???
Friday, April 25, 2014
Monday, April 21, 2014
Mirrored Behavior
As I have written before ; Autism is such an individual disability or ability (which ever way you wish to think about it) ..Each family will grow and learn that their individual will be unique in their needs and behaviors..yet somehow they are diagnosed under the PDD-NOS umbrella (Pervasive Development Disorder- and I cannot recall the second part specifically but it is something like Nonspecific Origin.....forgot what the "S" stands for!!!!haha)
Of course as your child grows and the years move on you learn all the different little nuances of Autism and how it effects your child ..kinda like on the job training....somethings are obvious and others are more difficult or perceive, diagnose and most importantly do your best to eliminate..GOOD LUCK WITH THAT!!!( another saying in the Autism community is "be careful what you wish for; because every behavior you wish away will return with a replacement behavior ....which can potentially be worse than the one you wished away on the first place!!!!")
The one I am writing about today is Mirrored. Behavior..I do not know if that is the formal monicker??but it's what I call it!!!
We all have certain Personalities and behaviors in the "typical" world and it is extremely hard for us to alter our habits. can you imagine what it might be like for one of our kids who don't have a "Switch" to turn off a behavior ????????
I try my best to do everything I can to model "appropriate " actions and reactions so that Dakota has an example or at least an idea of how people are supposed to act..believe me I am certainly not perfect and I struggle every day but I try...and I fail daily ..Dakota reminds me of that...With Mirrored behavior...something as minute as a reaction to another driver doing something stupid and I get lil road rage...I Can see him tighten up, and even holler himself sometimes ....
These kids are sponges. It's is incredibly critical we do all we can to give them the ability to see how we are SUPPOSE to act, react or behave. It is also another reason why all of us are so passionate about inclusion at school and positive typical peer models...They do not have the "social" chip..they are NOT programmed like we are!
All of that being said something I struggle with is checking my own anger and negative reactions to daily living..I cannot tell you how many times I have become angry at something ai hear on the radio or TV and I will make a stupid remark ..turn around and see it duplicate itself almost immediately in Dakota...with the exception that it is 100 times more intense and it does not go away as quickly ...
This has made me alter my behavior and "thinking"...I certainly have not succeeded ; I am a work I progress. What it does is make me rethink almost all of my actions and reactions before displaying them...AND ITS HARD. To see your child react to you getting angry and he yells and screams and groans and even gets physical it. It only breaks your heart and you want to spare him those emotions BUT it makes you check you own behavior at the door....It is like looking in a mirror and seeinghow destructive the whole situation is.....firstly I am hurting my child but lastly it is behavior unbecoming of any human being and it needs to stop....
Mirrored behavior has done a lot for me ...... I more fully understand how my kid "ticks" and what "triggers" him but it gives me a perspective of my behavior and how I need to stop and think before acting or reacting ...something that all of us are SOMETIMES guilty of NOT DOING!
We need a kinder gentler society and one that think before acting.....my son does that for me every day....I don't always succeed at being a lamb or perfect, I am a work in progress, as we all are BUT many times when I act like an ass, my son is a perfect reminder that I need to check myself,remember that he is effected by my actions ....and try to set a better example....
Mirrored Behavior can be a curse.The benefit to me is learning to change my behavior which hopefully makes me a better person and give my son a better environment to live !
Monday, March 24, 2014
Hair Twisting
This is such a sore subject for me......
Dakota broke his leg many years ago and one of the things that developed from that trauma is hair twisting ....I understand that everyone has to have a way to deal with physical pain , probably mental pain. Too!
This "habit" would probably considered minor by many of the parents and caregivers that have kids on the spectrum for me it is very high on my list. It aggregates me. It pisses me, it frustrates me....I look at it as self injurious behavior but it is extremely important to me because it is visual . THIS is what many "typical " people use for the first impression or a judgement on others...and it is something that for the most part should be able to be controlled.....(with the Caviot that behavior is AUTISM and I am expecting him to control a behavior which he probably can't) I realize it is unreasonable of me to expect Dakota to stop at least on his own.......but I have tried....verbal prompts , physical prompts, interrupt and redirect, reminders,examples.....
I know that this behavior serves more than one "need" for Dakota and I am continuing to research and find suitably replacement behavior...I have yet to succeed. It is attention seeking behavior; for instance today I simply left him alone for about 20 minutes to do some work in the kitchen and I came back to find a chunk of hair between his fingers twisted up.....he knows it upsets me and when I discover him twisting his hair he knows I will stop what I am doing and try to stop him from "twisting". He will also use it as a tool to keep himself from not falling asleep...and the big one is a way to deal with pain..I have to take a few minutes to assess what's going on before I plan my "intervention" ALL WHICH HAVE YET TO BE SUCESSFUUL!
I will keep on with this battle because it is an important one for me...but more importantly for him...being already identified as an person with challenges he needs to at least use the advantages he has to be included when ever possible ..if he looks (excuse the expression) stupid..that's one less reason the community will embrace him...
I know I need to try to get over allowing it to upset me and perhaps that should be easier than Dakota learning to NOT twist his hair BUT I am finding it just as difficult ....
Wednesday, February 26, 2014
WATER....and his aversion.....
Have been resisting posting since I have been experiencing trouble with this "machine" but I keep thinking about Dakota and how much WATER has been a main component of many of the battles and issues we both struggle with when it comes to Autism..
In short somewhere many years ago around middle school Dakota developed some kind of objection to drinking water...
His world consists of refusing to drink water unless he can drink it for a water fountain or a hose or the spigot of the sink......no bottled water, no water for the large bottled water like the sparkletts dispenser,Not from a glass ..NO WATER ....
I believe I think I know where it started but I cannot say for sure....a sprayer bottle had been used to wake him up to go to school < not me> and I ASSUME. This may be the root of the problem.
The aversion to the water has grown before it became so pervasive he would in Fact drink water from one specific glass at home and then one day the glass which was plastic developed a crack and started leaking and the was the beginning of the end...believe me I tried to replace the glass with every glass imagineable that was similar...he was just not buying it...I got so mad one day I threatened to throw away all the glasses I had bought (all Disney characters on them) and he cried and said he would drink water but eventually it faded to resistance....
To augment his water intake I have now developed an alternate ....a pitcher of decaf tea is made everyday and YES he has a specific glass for that too,but he drinks a huge amount of ice tea everyday,in fact I just broke the last glass he drank tea from and YES it was a disaster .....from friends and family on Facebook I was able to find replacements and now have plenty of glasses to last hopefully thru his life time???as a side note one would say why not use plastic and I would say to them the specific glass was used way before I realize the obsession ..or it would NOT have ever picked that container.
So back to the water...he cannot express why and he is so rigid about it, that it just has become a part of life in this house. Honestly it became one of those "pick your battles" things and I choose not to fight this one...so many other things that are more important!
One more thing about the water, he's totally ok with bathing or swimming ..water is no issue BUT GET ONE DROP ON CLOTHING and he FREAKS OUT... It can trigger severe behavior. With the glass the behavior is more about just not drinking it ; but use a sprayer bottle on his hair or try to wash his face with a wash cloth or louvage his ears O M G ....it can turn into a "Release the Cracken" moment. Often offering an immediate replacement Tshirt will aleviate a behavior
NOT ALWAYS
It's just another challenge here but certainly apart of this house...if you are struggling with something like this the only advice I can give is : Always take a breath, analyze the situation, see if you can
concoct a solution, Roll with it and never let it get the best of you or your child. Theres always something more important to address and it is never so important that your child needs to think that it makes him less perfect just because he can't handle a situation..AFTER ALL ITS AUTISM!
In short somewhere many years ago around middle school Dakota developed some kind of objection to drinking water...
His world consists of refusing to drink water unless he can drink it for a water fountain or a hose or the spigot of the sink......no bottled water, no water for the large bottled water like the sparkletts dispenser,Not from a glass ..NO WATER ....
I believe I think I know where it started but I cannot say for sure....a sprayer bottle had been used to wake him up to go to school < not me> and I ASSUME. This may be the root of the problem.
The aversion to the water has grown before it became so pervasive he would in Fact drink water from one specific glass at home and then one day the glass which was plastic developed a crack and started leaking and the was the beginning of the end...believe me I tried to replace the glass with every glass imagineable that was similar...he was just not buying it...I got so mad one day I threatened to throw away all the glasses I had bought (all Disney characters on them) and he cried and said he would drink water but eventually it faded to resistance....
To augment his water intake I have now developed an alternate ....a pitcher of decaf tea is made everyday and YES he has a specific glass for that too,but he drinks a huge amount of ice tea everyday,in fact I just broke the last glass he drank tea from and YES it was a disaster .....from friends and family on Facebook I was able to find replacements and now have plenty of glasses to last hopefully thru his life time???as a side note one would say why not use plastic and I would say to them the specific glass was used way before I realize the obsession ..or it would NOT have ever picked that container.
So back to the water...he cannot express why and he is so rigid about it, that it just has become a part of life in this house. Honestly it became one of those "pick your battles" things and I choose not to fight this one...so many other things that are more important!
One more thing about the water, he's totally ok with bathing or swimming ..water is no issue BUT GET ONE DROP ON CLOTHING and he FREAKS OUT... It can trigger severe behavior. With the glass the behavior is more about just not drinking it ; but use a sprayer bottle on his hair or try to wash his face with a wash cloth or louvage his ears O M G ....it can turn into a "Release the Cracken" moment. Often offering an immediate replacement Tshirt will aleviate a behavior
NOT ALWAYS
It's just another challenge here but certainly apart of this house...if you are struggling with something like this the only advice I can give is : Always take a breath, analyze the situation, see if you can
concoct a solution, Roll with it and never let it get the best of you or your child. Theres always something more important to address and it is never so important that your child needs to think that it makes him less perfect just because he can't handle a situation..AFTER ALL ITS AUTISM!
Saturday, February 15, 2014
Another apology..
I want to apologize for the mistakes on the previous post..I know there are several .i am having a little trouble with editing my excerpts and have not figured out why this pad won't let me scroll down they the peace to correct???I will try to get on the desktop soon...again sorry
The Pink Glass and the miracle of FaceBook,friends and the Internet
Trying to keep inline with my with my focus on Dakotas daily living skills as the topic for this years posts !I felt that this weeks events were particularly relevant...
As puberty approached I noticed that OCD (obsessive compulsive disorder) seem to take the front seat to the Autism with Dakota...much more ritualistic behavior especially anything that had to do with eating...he has always been a great eater as far as what he will eat, it's been more about the places, the days of the week and even some of the "tools" used.
For instance, his consumption of liquid has been dictated by the vessel in which the liquid resides in...he HAD a specific glass for juice but sadly it got broken and since there have been numerous attempts by me as well as friends to find the perfect replacement ..to NO avail...it was a glass that had the oranges painted on the side and I never imagined that there were that many variations of this glassware until I wanted a replacement , one friend searched as as Texas and even had her daughter looking and buying one of a trip to Vegas..
the only reason I was trying to replace it was because Dakota absolutely refuses to drink juice out of any other container...believe me I have tried; pouches, bottles, plastic sippy cups other juice glasses ..BUT N O nothing doing if it ain't that glass forget it..it has been several years and we have gone thru probably 7 to 10 offerings and still to this day he will not drink juice any longer!
So this week when I finally broke his last Pink Glass that he drinks his decaf ice tea out of , I knew I was in trouble.
let me preface this with the fact that I started giving him these glasses long before I knew there was an obsession with the container or I never would have used glass,that could be broken;however it was too late to change once the OCD was already in place ..and I did try to stash duplicates but eventually they had to be used....
So this week Wednesday was already the day from hell. My mom was going for an outpatient procedure and things were rough, Dakotas coach was sick and the whole day was screwed up....then. Go to get his tea in the pink glass out of the refrigerator and BOOM ..slipped right out of my hand. I wasn't too rattled because I knew I had one last one stashed so I very calmly pulled it out of hiding ,went to wash it in the sink and son of a bee???the damn thing tipped over and POP.....out pops the side of the glass...I even had a liner in the sink to prevent breakage BUT. NO this damn glass just had to break???needless to say I became the mother from hell cuz I just broke his glass....I was cussed at, yelled at, hit and the worse part of all ...he was refusing his tea in any other glass???one might not so worried but here's the rub??Dakota has some kind of aversion to water and he just does not drink enough water ..he will. It drink water from a bottle , even a big sparkletts bottle, from a glass, from anything but a spigot like a water fountain or drinking fountain in school or a professional building...again believe me I have tried so I argument his water intake with decaf ice tea...now his glass is broken and I am up shit creek without a paddle...
So here's where friends and FaceBook come in...I posted an APB(all points bulletin) to all my homies on FB to keep their eyes peeled or to send me resources to try to find these glasses since I had tried a few times to replace them befor and ran into a few walls ???within the day I went from Libbey Glass , to Anchor -Hocking to Wheaton...but I posted this morning and with the good efforts of friends,family, Facebook and the internet I have at 12 midnight placed an order for Dakotas pink glass..and I have ordered hopefully enough to last his lifetime..I have 8 coming and my sights on 4 more...considering I had these glasses befor he was born I think that 8 should be enough but hey who knows???
All I can say is Thank you for all the people who helped sort through the internet ..it really does take a village
I know some would say that Dakota needs to get over it and learn to deal But I say he didn't ask to have these damn disorders so I will accommodate something that makes a difference in his life???perhaps there will be a day when he might have to adapt??there could be a situation where it would be impossible to replace or find a glass ..
For now I am happy to say THANKs to my friends, FaceBook and the internet,the new pink glasses are on their way.
As puberty approached I noticed that OCD (obsessive compulsive disorder) seem to take the front seat to the Autism with Dakota...much more ritualistic behavior especially anything that had to do with eating...he has always been a great eater as far as what he will eat, it's been more about the places, the days of the week and even some of the "tools" used.
For instance, his consumption of liquid has been dictated by the vessel in which the liquid resides in...he HAD a specific glass for juice but sadly it got broken and since there have been numerous attempts by me as well as friends to find the perfect replacement ..to NO avail...it was a glass that had the oranges painted on the side and I never imagined that there were that many variations of this glassware until I wanted a replacement , one friend searched as as Texas and even had her daughter looking and buying one of a trip to Vegas..
the only reason I was trying to replace it was because Dakota absolutely refuses to drink juice out of any other container...believe me I have tried; pouches, bottles, plastic sippy cups other juice glasses ..BUT N O nothing doing if it ain't that glass forget it..it has been several years and we have gone thru probably 7 to 10 offerings and still to this day he will not drink juice any longer!
So this week when I finally broke his last Pink Glass that he drinks his decaf ice tea out of , I knew I was in trouble.
let me preface this with the fact that I started giving him these glasses long before I knew there was an obsession with the container or I never would have used glass,that could be broken;however it was too late to change once the OCD was already in place ..and I did try to stash duplicates but eventually they had to be used....
So this week Wednesday was already the day from hell. My mom was going for an outpatient procedure and things were rough, Dakotas coach was sick and the whole day was screwed up....then. Go to get his tea in the pink glass out of the refrigerator and BOOM ..slipped right out of my hand. I wasn't too rattled because I knew I had one last one stashed so I very calmly pulled it out of hiding ,went to wash it in the sink and son of a bee???the damn thing tipped over and POP.....out pops the side of the glass...I even had a liner in the sink to prevent breakage BUT. NO this damn glass just had to break???needless to say I became the mother from hell cuz I just broke his glass....I was cussed at, yelled at, hit and the worse part of all ...he was refusing his tea in any other glass???one might not so worried but here's the rub??Dakota has some kind of aversion to water and he just does not drink enough water ..he will. It drink water from a bottle , even a big sparkletts bottle, from a glass, from anything but a spigot like a water fountain or drinking fountain in school or a professional building...again believe me I have tried so I argument his water intake with decaf ice tea...now his glass is broken and I am up shit creek without a paddle...
So here's where friends and FaceBook come in...I posted an APB(all points bulletin) to all my homies on FB to keep their eyes peeled or to send me resources to try to find these glasses since I had tried a few times to replace them befor and ran into a few walls ???within the day I went from Libbey Glass , to Anchor -Hocking to Wheaton...but I posted this morning and with the good efforts of friends,family, Facebook and the internet I have at 12 midnight placed an order for Dakotas pink glass..and I have ordered hopefully enough to last his lifetime..I have 8 coming and my sights on 4 more...considering I had these glasses befor he was born I think that 8 should be enough but hey who knows???
All I can say is Thank you for all the people who helped sort through the internet ..it really does take a village
I know some would say that Dakota needs to get over it and learn to deal But I say he didn't ask to have these damn disorders so I will accommodate something that makes a difference in his life???perhaps there will be a day when he might have to adapt??there could be a situation where it would be impossible to replace or find a glass ..
For now I am happy to say THANKs to my friends, FaceBook and the internet,the new pink glasses are on their way.
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