" Triggers "

I have been wanting to write about "triggers " for awhile ...just haven't accumulated the necessary content .....

Triggers are exactly what they say....for Autism, it can be almost anything imagineable that is the onset of behavior and meltdowns.For instance.....those of us in the community refer to different things as possible "triggers" often never really knowing for sure because it is a great mystery and our kids just can't ,won't or don't tell us what caused them to go "sideways".

"Triggers"come in all kinds of forms and sources.They can be emotional, physical, psychological,environmental or sensory driven.Examples would be observing an argument  by others-emotional:a t-shirt with a tag poking their neck-physical: their brain not accepting a command to work a part of the body-psychological:a color or texture of carpet or walls-environmental and finally a noise..like a trash truck going by- sensory

There are hundreds if not thousands of these occurrences every day and many of our kids do develop a level of tolerance for most however almost every individual has a few that no matter how hard they try; they cannot handle it and will meltdown.

Its funny as a parent who is keenly aware of this, as most parents are, you try to be present and eliminate as many "triggers" as you can BUT there are always those that sneak up on you . They leave 
you confused and wondering for hours, days sometimes even weeks 
what the hell happened and why did our child go off like that...you analyze, pick a part try to identify and many times never come up with an answer.....other times I have what I call (open hand slapping my forehead) "wow I should have had a V-8" moment...all of a sudden it's like the light has come on and you completely know what it was that caused that meltdown .....You make a mental note and forever in the future you try with everything you have to avoid that "trigger"! Often we as parents and caregivers identify this "behavior"  as adopting a kind of autism;by osmosis. Another 
observation by many is  that you become "anal" when trying to 
avoid certain Situations or making certain environments identical in order to eliminate the meltdown.

One thing for sure most of the public or community don't get it or understand it.Once the individual explodes and is observed then it becomes apparent the need for a a routine or pattern.
Triggers are a tricky thing. Your child doesn't tell you "Oh That's Pissed me Off" or "the color bothers me"or "the noise is irritating" It's really a crazy feeling when you are constantly reviewing environments in order for your child to function "typically". Just another part of the job!

A Tornados Coming--PREPARE!

Autistic Behaviors may not be a tornado ...but to those who endure them,it may seem like one.....when a meltdown is coming, the theory is to watch for "triggers" ; try to eliminate those triggers; hence avoiding or at least decreasing the severity of a "tornado"

A great majority of the entries in the blog have been about the good things, the happy things, the accomplishments and progress- this is about one of the ugly facets of autism.....

There are a great many opinions on meltdowns among the community that lives,works and teaches autistic individuals. I truly believe there is not one opinion that reigns supreme and again , for me,It is a very personal decision now the individuals parents and caregivers choose to confront meltdowns. Meltdowns are just one type of behavior that is talked about within autism...you can have very menial behaviors that many of us tolerate and do nothing about because they are not "the battle" ..they are more personality traits of the individual.Meltdowns on the other hand can be self -injurious, very physical and dangerous in many instances. My belief and description is a trigger occurs(something like the auto ingintor on a BBQ) which sets off a chain of events leading to the person literally LOOSING IT! This meltdown IS impossible to stop once it is in motion.IMHO(In My Humble Opinion) I believe it sends a signal to the brain, some kind of switch it flipped and their brain "goes sideways". If you are old enough to remember when the TV went off at night and there was "ant races" or "fuzz" crawling all over the screen .........to me that is exactly what happens. Once that starts you just have to wait it out....these individuals DO NOT have the ability to shut it off. They DO NOT have the ability to reason. TheyDO NOT care if their behavior is inappropriate or even violent.The only thing they know is something occurred that they did not want or like and instead of using what all of us use like our voices they use their bodies !
They can and will kick,scream,grab, punch,yell,cuss,throw themselves on the ground,lashout at others and even animals.They DO NOT care where they are at, they DO NOT care where they are at,they DO NOT CARE who the people are! At the point on "impact" or the tornado the only choice is to make sure the individual is a safe as possible, protect yourself and RIDE IT OUT!!! Talking, screaming, hitting, restraining, REASONING ......NONE WORK OR ARE EFFECTIVE!

This is their disability, this is their "cancer", this is their "diabetes", etc! John Q. Public does not understand this, muchless have the patience to tolerate it...hundreds of times I have read over and over about parents who have dealt with meltdowns in restaurants or grocery stores or anywhere on public.....the funny thing is not the meltdown being the worst part of the incident. But the people who witness it and the things they say or DONT SAY!!!"oh he just needs a spanking" "He needs to be put in timeout""apparently his parents don't know how to discipline him"" oh if he was my child that would never happen"
OK they are entitled to their remarks and opinions....walk a mile in my moccassins then 
tell me the same thing???Even worse is you get the person who thinks they have the situation summed up and they want to come to your rescue and intervene . Dont get me 
wrong I have been thankful a few times when some one helped by being supportive and asking if there was something they could do..it's the ones who want to "take down " your child without knowing or understanding this is not a "typical" temper tantrum of a young child or a young adult.

NOW, within the community itself there are many opinions as well,how to deal with these"tornados". There is a faction of parents and caregivers that believe these kids still have the ability to learn between right and wrong and even tho they have autism they can be TAUGHT to CONTORL these actions....with one Caviot ...those that are very high functioning Aspergers ...I COMPLETELY DISAGREE. Many argue that with intensive instruction they can learn (not disputing they can learn,only disputing this is their brain pattern which I believe is ingrained ) The autism support groups online discuss this quite often. And many insist that they can adapt.To go even further some of the parents have called the police on their children, had them arrested, had them committed, had them on probation simply because they need to learn "consequences" "

I realize that being violent is unacceptable, that our society has judgement and big reactions to people who are violent .....These individuals are NOT THAT....they are lashing out because their brain went sideways and there is NO OFF BUTTON...so you can arrest them, committ them, counsel them, put them thru probation ..their brains will still be the same! I do not understand how these people think these actions help. It is not for me to judge only to voice my opinion. I do want to make it clear that these kids,individuals, children, young adults,whatever category you want to indentify them by,can hurt someone or themselves.  They flail and scream, kick, sometimes bite, hit their heads or slap their own heads, charge at someone or something like a wall, will elope or run, sometimes even towards a dangerous situation. I could go on but I think I have painted a big enough picture. People have no tolerance and certainly no understanding even people who live with it often times don't tolerate it...my explanation is that we as TYPICAL people also have a brain pattern that tell us this behavior is wrong. It is NOT something you do and especially out in public OR TOWARDS THOSE WHO LOVE YOU AND TAKE CARE OF YOU. Our kids DONT GET THAT when their brain goes haywire, they do NOT have that component, they are not social creatures and have no regard to social correctness.

I GUESS TO SUM IT UP , these behaviors are like tornados perhaps even worse...you have very little warning, you never know which direction it's heading,when it makes landfall there's no avoiding it if you are in It's path and all you can do is ride it out till it passes.

DAN- Defeat Autism Now MY TAKE

DAN  or Defeat Autism Now  is a community within the community of autism ...that specifically addresses bio medical and holistic approaches to what many consider perhaps not a cure but a solution to addressing Autism. 
The theory is that most if not all symptoms of Autism are triggered not developementally but physiologically...that viruses,gluten,caffiene,cassien, yeast,gut issues, and allergic reactions are the root of behaviors. If treated aggressively you can eliminate or at least reduce significantly most of the behaviors and patterns autism is related too!

There is a huge population that have had or seen results with these types of treatments and swear that this is the answer. While I applaud their efforts and results I still believe that it's just not that simple and not all of our kids can be put in the "same box" . These parents have spent huge amounts of money, Time and effort  and have succeeded ....But after living in this community for 27 years there are many many children and adults who did not see the same results and continue to be fully involved individuals with
Autism..
I would encourage any parent or caregiver starting out to investigate these therapies BUT not to be disappointed if they find that they didn't work for their child... 
The simple fact it take this position is that my child did not benefit from many of these  therapies...

I am not saying they are wrong and I am right what I am saying is Autism is still a confusing complicated disorder that has not yet been researched enough to say that one way works and another doesn't....and what I am saying is I have seen many many therapies come and go and they seem to help some , they seem to help many but they never help ALL!!!! Until that time when we have the scientific proof it's a crap shoot for all of us 
Finally what I have said over and over is that you NEVER GIVE UP and Go with YOUR GUT!!!!

Several Weeks Have Past!

Perhaps most who write a blog are those who either make a career of blogging or have another project to promote..so they are mostly daily or at least weekly blogs .......for my purposes it is more about relevant topics, thoughts I want to share or information that may assist someone who is still striving to figure things out in their world...

It has been more than 3 weeks since my last entry ; for many reasons and I am quite sure probably none of which anyone who is reading this really cares!I truly hope that those that do read are more interested I. The content rather than the quantity of the posts. All of that being said I have to admit that my blogging is driven by an event  or situation..and of course my ability to get to the computer and write....Done mostly in the middle of the night when Dakota has finally fallen asleep. Usually around 3 am

Recently he has has been unusually close and not away at all..I am not sure exactly what is driving this desire.I have about 8 hours a WEEK that he is not with me...very intense and very difficult to manage any personal time for anything much less delegate time to blog . I try to be conscientious to those who read , I certainly don't want to loose or put off people but I clearly want to write about things that are of interest to those who are walking this path. I also want it to be relevant enough to encourage those that do read to pass on to others ..because afterall it's not only about helping those who have their own stories and situations but it's also about helping community understand, embrace and tolerate our kids.

Finally not posting so regularly could be a positive thing in someways...at least this way you don't get sick of keeping up with all the posting and makes it more enjoyable when it's once in awhile..at least that's the way I think of it..

For the remainder of the year I will continue to mainly concentrate in specific traits , behaviors and issues Dakota has ..the purpose is two fold; help other recognize these "things" either in their own individuals or recognize these traits by individuals out in the community. 
And to memorialize his life so if the need arises there are "hints" to his personal map!
I hope to fill this blog with  joy and love . I strive to fill this blog with information and insight .

"Go with your Gut" mantra

 Recently there was a thread about meds and dosage on one of the Support groups I follow online....a discussion pursued as I sent a post urging the caregiver to consider a lower or slower dosage on a med that as prescribed or recommended. 

Well I ruffled a few feathers, no one was disrespectful but came back with "there is a reason why meds are prescribed the way they are and are calculated on need, weight,and occurance rates either to control,manage  or eliminate a medical issue"...WHICH I completely understand...

In the case of an antibiotic for an infection this makes sense. When we are talking about psycho- pharmaceuticals IMHO that is a different matter all together...not only are most of these anti psychotic drugs for adults,it still remains a guessing games to  what works for who and how it affects each individual.Add to that a large majority of our children do not talk or have language yet are far from able to describe what they are feeling or how something does or does not work for them. So it is our job or duty to decipher (just like having an infant) what we see, what causes reactions and what seems to work ...we are with these kids 24/7 for the most part and we see, feel and know them  better than anyone. A professional is many times "Book Smart" but not "Street Wise". They are good intentioned and are giving us their best knowledge and opinion BUT it is not the "gospel". Yes we must respect their professional knowledge AND we have to respect our own observations and feelings...hence "Go with your GUT"!

When a doctor gives me a script I know almost immediately whether it works or it is givingme trouble....with my child I JUST DONT KNOW!

I would error on the side of less than more especially when trying a new med.....

As a side note I have spoken many time about this but Dak to a med for many years and I was always being encouraged to increase the dose.I was told it couldn't possibly work and the amount was infantesimal with how big he was,I remained vigilant and knew he didn't need any more.What he got worked for him when I eliminated it I saw behavior and when I increased it I saw behavior ...

One last thing about Pharma and especially kids in school I strongly encourage you to restrain from informing those that work with your kids when you try new meds or change doses....it's the Power of suggestion thing.When they don't know,then it cannot become a reason for topic..ie "Oh  I could tell the new meds really made a difference" or "The meds seemed to cause strange behavior"

Another perspective on Mother's Day

In May of 2012 I wrote a small post about Mother's Day .... How moms of kids with Autism may have a very different day than what the typical or expected day would be like for most moms. I also stated that I realize we are not some special group , elite or there are not others who may have something other than what many would consider a cookie cutter description of Mothers Day.

In this post I wanted to address another perspective. Over the course of perhaps the last year or years,through social media I have had the honor of re connecting to many lost, forgotten or out of touch friends from all realms of my life. 3 of these mothers come directly to mind who I have mostly re connected on FaceBook...who have in fact lost their children.

So I wrote about my not so fabulous "chores" that would occur on Mother's Day; all being not my idea of what Mother's Day should or could be...perhaps close to a bitch but at least words of disdain: as I was taking Dak to In-N- Out ....and then later having to prepare what would be our Mother's Day dinner???as the day progressed I began to think about these Moms who no longer have their children and how they must hate this day or at least approach it in a very different way...I wouldn't say it was guilt but more compassion for what I could never say I understood...

I guess what I am getting at is this....one mom lost her son years ago and still misses him everyday, another lost her daughter over a year ago and is struggling with others words and opinions of how they don't have the right to tell her how to mourn and the third mom lost her daughter who died unexpectedly in her sleep just about a month ago and is still reeling from the questions of why....
How do these women , these MOMS celebrate ?

Simply put they cannot.Yes they are still moms, they will always be moms and that should be what it is all about however I am sure in their minds they ask "How can I rejoice, how can I celebrate this day when my heart aches?" I have no clever answer, no quick fix, all I can say is I love you all and I am sorry you don't have your babies anymore...Cry, Pout, Scream and if it's possible try to have a happy memory! 

We all have stuff ....we all have challenges , we all have history and we can't turn off our brains to the bad  or negative. We do have the ability to pick ourselves up by the bootstraps and trudge through life    And try to make the best of the minute, the hour , the day etc...

I am so incredibly sorry these women who lost their babies . I am quite sure there are thousands more that I do not know, my heart goes out to them and for what it's worth Mother's Day is over for this year maybe next year it won't hurt as bad ...but I seriously doubt it....