General State of Mind

It occurs to me that people who check in here, for the most part are walking the journey of Autism somewhere on their lives ....but occasionally, I get a person who is either researching, curious or may be even an aquaintance that just doesn't have to live with the things most of us do who are part of this crazy diagnosis.

If I read from that point of view, it often seems like I am whining or may seem to think I have been through more since Dakota is older..
My purest of intentions are simply to present a subject that "has come into play"in our house..state the facts , observances and whatever solutions...if any ...that worked for us.
I am by no means an expert,except when comes to my kid and even then, there are times when I don't get it...
The whole point is to merely describe what we experience and tell you how we handled it with the hope that somewhere down the line a light will go off and you will find your own solution creatively from what happened to us...

As far as the whining goes I never intend to whine, I am not complaining .... Sometimes it just gets overwhelming and is definitely difficult to see the light at the end of the tunnel because honestly in our case I don't think there is one.

My Heart and My mind have come to a resolve that this is life and this is how life will be till the end...it is not whining it's observational; and being in a single parent home all the weight of everything lays on me...I am OK with that. It is my job and my responsibility and honestly it has become a general State of Mind..

Ramblings about the diagnosis....

From the time of Dakotas birth we always knew we would have "mountains to climb"...This was not a typical birth and a baby/ infant that came home and developed like everybody else's kid...

When you first enter into the world of Autism you get certain repetitious facts ..1 being that usually or most cases of the onset of autism occur between 18 - 36 months . the child usually has an uneventful birth,they come home and seem to be as any other child and something triggers them and they start a reversal process of loosing what they already attained...they are walking, talking,eating and growing and all of a sudden it comes to a screeching halt...Most specifically the obvious sign is loosing language and social skills are "the tells".
Dakota was different as there was a traumatic birth and many complications , so it was apparent from the first day  there would be challenges. never knew at that point that Autism would be part of the mix.

Getting a diagnosis WAS and STILL IS......difficult because of the "spectrum".  Most individuals with a disorder or disability have similar traits . With autism the saying is if you have met an Autistic person ; you have only met one Autistic person...the deficits, behaviors, level of functionality and other issues are so diverse they are very rarely identical in persons who are Autistic.Thats not to say,that especially someone who lives or cares for an individual cannot spot another autistic individual  a  MILE AWAY....but it is that they are so peculiar and usually out of place when it comes to a social or communal situation and the rest of us "typically functioning" people would react similarly....it's easy to spot the "behavior" 

Having  said that it is quiet another thing to get a diagnosis because of the same reasons.
 In our particular case  Dakota was observed and reviewed by Inland Regional Center at 
the age of 3 and we were told OH No he's not autistic because he's too social. He makes eye contact..what wasn't considered was that he had intensive  Occupational and Physical Therapy from 6 weeks ..so he was doing a lot of things that were not described on the DSM IV...so they labeled him  mildly to moderately mentally retarded...AND to this day I am still fighting them about this DX....
At age 7  finally after being on a waitlist for 2 years we were able to go to the Diagnostic Center at Cal State LA..for a week long probative observation which at the end they assemble all the individuals and their reports together  for a roundtable and discussion on their recommendations for the individual and they submitt these to the school district and the other supporting ..agencies
We got the Autism DX there...first day , first appointment with the medical Doctor..Joanne Weigel..I was relieve and really thought this was going to be a GOD send......NOT. Essentially it's is a great place and their work is great  up unfortunately  the School Districts didn't care and didn't apt attention to any if not all of the recommendations. Very frustrating. I have carried on and I did the best I could to fight for Dakota to get him the 
best opportunities. BUT it was always 2 steps forward 1 1/2 steps back...I do believe that it's a little better now. Since more and more kids are coming with a DX . In the 80's it was crap...

People mis judge, assume and under estimate our kids...they are labeled with all kinds of  I abilities and certainly a majority of people including many professional do not realize their intelligence..it's quite sad. Just today Dakota was looking at the TV guide on his iPad and he was watching CSI ethereal was a drop down box with a reference to one of the stars leaving the series at the end if this season???he turned to me and read "Exclusive..George Eades leaving CSI rafter this season " then He began to read the article. I am sorry he is NOT mentally referred if he can read that article and pronounce all!the words correctly....yet some YAHOO named Bob Chang "labeled him "25 years ago and IRC clings on to that DX....

I have for the past 4 to 5 years been pressing them to change this DX and they refuse? So 
now we have to go and have a complete re evaluation....I am not afraid of it but I think it is a complete utter waste of time and money that the State will be spending on something they paid for years ago,when we went to the Diagnostic center.

We as parents don't need the DX but unfortunately everyone else does..guess that why it becomes important for us!

Not a Good Mom

I am trying so very hard to be a good mom....I know I am far from perfect ; I faulter all the time...
I am struggling STILL with the hair pulling and twisting and it is driving me absolutely crazy. It is making me yell and it is frustrating me so badly I just want to get off this ride.

I understand he has aches and pains and things he will not verbalized. The action of twisting the hair is a way to displace something that is bothering him, yet I do not know what . I cannot control my own emotions and disappointment. 

I look at the damage, it breaks my heart. He has such beautiful hair and right in the front is this bald patch like someone took a buzz saw up the middle . I try to tell him how handsom he is and how lucky he is to have hair when others his age are already loosing theirs..he says he won't do it any more and 2 minutes later there he is twisting again. 

I am so ashamed that I let it bother me, I just can't get passed it. perhaps because we live in such a visual society and Autism is hard enough to struggle with muchless let people judge you before they give you a chance to know you...

Somehow I am hoping that some miracle will occur and the twisting will stop. I don't hold out hope for that  that I will never give up wishing. I am not a very good Mom right now!

Trying Hard not to be Defined ONLY by Autism or My Child

I believe I have written about this topic before ...do not know if I can offer any new insight but it has come to the forefront of my thought process again so here goes......

I dont write often about my personal dreams aspirations or expectations, after all this is a blog about living with Autism and it designed to address help, inspiration and encouragement to others traveling the same road. It has become glaringly apparant that there are a lot of us out there "on our own". That's not to say that there are not spouses, mates or exes that have some or little involvement and extended family that can, sometimes or often lend some kind of support in the daily routine or care for our kids.
Not to mention that is is relatively rare that the family is comprised of one individual with autism and there are no siblings. It is also more common than I imagined that many have more than one individual who has some type of challenge or diagnosis.

Guess where my thoughts are going is to the Mothers And  Fathers...who are out there doing it basically alone...and how their personal life and needs are altered simply by the fact that Autism has knocked on the door. It's no secret that the divorce rate is about 75% with families who have individuals on the spectrum AND THAT Autism played a major role in the demise of their union. It's not about pointing fingers who right who's wrong who didn't do what...IT JUST IS
Which leads me to the point of this passage...
just because you have a child with Autism doesn't mean your life should come to a screeching hault....BUT IT USUALLY DOES. People will say "you still have a life" "you can't let  IT control the situation" "don't you want or need someone" "oh there's  someone out there who will understand""there's someone for everyone"" you have a life ,too" and it goes on and on...it's not about putting your life on hold: the reality is autism is here to stay its real and it is a lifetime.So where do you go with that? how do you even attempt to simply date muchless meet a new partner, with the goods you have to sell? 

We are tired, frustrated, mentally and even sometimes physically abused.....we love our kids and won't give up on them but often just don't know how many more days or hours are in us. How can we possibly ask and prospective person to "buy a ticket and come join the show?"
I certainly didn't write this excerpt with the intention of having an answer for any who read but I can tell you that for me there is no right or wrong answer.....because I have faith that there are people who can accept these circumstances. I also am realistic to know that it is rare. I am famously quoted as saying "it's hard enough to be a single parent with "typical " kids and trying to find someone ...which very rarely works out BUT add to that a child who has developmental issues ....might as well forget it"

Our lives are filled with schedules and routines, doctors and therapists, coaches and programs..how do we make it all work..usually by forgoing a relationship.Less 
complicated and certainly  simpler.I am not sure that is how it is supposed to be. 

I am forever an optimist and choose to believe that if it is a factor in your life that is important then some how,some way,you will find a way to make it work. I will counter that with it's OK to be alone and to know that if you are comfortable that way there's is nothing wrong or odd and no ones opinion should color or change yours...

Since I am 28 years into this journey and the majority as a single Mom I can say that it would be nice to find someone. On the other hand where's the time or ability to do that???Not Sure..even go as far as to say that it could be an even bigger nightmare,if it's not the right one.It not about giving up or giving in, it's more about doing what works for everyone. Sometimes that means that you are the last one on the list.

In conclusion I will say that having someone there to even do something as simple as bring you a glass of water can be an exhilarating fabulous reward and is worth figuring out how to make it work.I recently got the opportunity to go out for an evening without Dakota (which had been years) Not only did I really need it and enjoyed it but realized that I was not defined by my child or Autism. That was a very good feeling

"Momma said there'd be Days like this"

Last  night as I was reading posts of FaceBook one of the parents posted what I think was not only the MOST appropriate  BUT WELL STATED comment about Autism in general:

Dear autism, we have had enough of you today, please go away. We are done with you. We are definitely breaking up. Please don't call or text. GOOD byyyeeeee!

The best break I have seen ...it gave me a chuckle but it also validated every day, every time I have just had enough..

I also recently learned that a close friend of mine has just started a journey of her own with the new job of caring for a family member who has dementia...She wrote me and said that it was challenging and some of the things that have happened were never in the realm of  what she ever imagined....."welcome to my world" 

I have made the observation that some people go through life virtually unscathed..no illness, no death, perfect kids and relationships and it's as if they are under some kind of lucky star...others can't seem to escape drama, maladies and constant turbulence in their lives...As I have gotten older one thing I have realized that almost everyone has at least ONE THING! One Wart, if you will! And we all learn to adjust, accept and deal. The bigger point is that USUALLY it is a passing thing it's a time you get through and then it is over. Autsim AINT THAT WAY! I think that is the most poignant observation.

Today was a day I needed that break up speech..simple and true. Dakota recently had a couple of weeks that were for lack of a better word challenging. I t frustrated me but more it affects me emotionally. For the most part I can pull myself up by the bootstraps and get on with life but when it just keeps coming back at you again and again, it wears you down. I must admit I have had more than a couple of days wiping tears that well up in my eyes because  nothing just goes right and I cannot blame Dakota it is NOT his fault. His life and structure are so ridgid and it shrinks his world...mine along with it. I don't worry about the consequences for me only for Dakota. He did not ask to be born  so it is my job as his mother to do everything in my power to give him the best I can offer him.

Many criticize and make remarks ...he's spoiled , you do everything for him, he's always by your side.YES that's right. I owe that to him, I owe him a decent life ad NO ONE ELSE WILL DO IT FOR HIM. As long as I am on this planet and breathing he will be my job. And I can only hope and pray that when I am no longer able to do it that some how some one will step up and TRY to continue  what I did.....

Never-the-less one thing that can not be taken from him is his memories.I hope that as rotten as some if the times we have had to deal with that he will always remember his Momma loved him and your always walk on hot coals for him...I owe him that much!

2 Meltdowns and One Lost Earring!

September came quickly with the always and ever present birthday looming...lots of preparation and planning,for my boy only asks for one thing all year long and this is it...Don't know if I have ever posted these thoughts but this is my justification ...I have a kid who; all year long NEVER ASKS FOR ANYTHING....you never know what he might be yearning for because he just doesn't express himself that way...ONCE A YEAR he asks to go to the Disneyland Hotel and Goofy's Kitchen..I try to offer other locations or destinations,BUT. NO ..he wants Disneyland...so it is done!
This is a kid who doesn't make a wish list for Christmas,never watches the commercials on TV And says oh I want that MOM,he doesn't ask for Nikes,iPads/iPods, money for the movies or to go out, or for clothes. So the way I look at it if I spent money on all those things over the course of the year it would cost even more than what is spent for his trip....

Every year there are added expenditures that are of NO MONETARY VALUE....sometimes very minimal.This year it was 2 meltdowns and a lost earring...for many reasons the stress and anxiety of this annual event gets to him as much as it does to me...we both look forward to it but sometimes things just do not go according to plan ...

One major challenge this year was the parking...long story short the lot I ALWAYS park in was shut down and created several obstacles ...and it stressed me out..I got huffy and Dakotas "mirrored behavior"kicked in...we made due thru his birthday but somehow by the next day I had a lil confrontation with the parking attendant gaining access to the parking lot I managed to get them to allow me to park in and all of a sudden I was getting resistance..well I got huffy and Dakota followed suit..the arm would come up to let me in and the attendant came over to direct me to another lot but when they observed Dakota having a screaming fit decided to let me in rather than pull their nonsense on me..what a shame that a kid has to have a meltdown before they believe your story that you need specific parking for the reason you stated.....

Oh yeah and Dakota decided to grab me after we finally got parked and I lost an earring...luckily. NOT an expensive one but I was bummed anyway ...that's a minor loss I can live with....

The following day a couple of his friends came and went to the park with him ....and I am still not sure exactly what caused it..but In the bowels of California Adventure..all the way deep into the park, we had ridden several rides and stopped to get refreshments....and when we were checking out his drink tilted ever so slightly but 3 drops fell out and he turned into a basket case...screaming it spilled It spilled...Call the cops!
as luck would have it there was a parade going on outside so the restaurant was a ghost town so I
barricaded him in a corner till I could talk him down off the ledge...I have gone over everything and  still cannot point to one specific thing that caused this meltdown...but  it was not...I mean hotter than hot that day, he has just gotten off Screaming and I caudled  him a lil getting him ready to ride, he had
 just taken a stellar pic with his friends and we walked into this restaurant and he lost it....very
unusual for him to be in the park and loose it...and it was a doosey...he went on for what seemed like an hour but it was probably more than 15 minutes..his poor friends just headed outside and the staff was gracious enough to allow me to let it work it's way out....he was pretty intense on this one so I kept him corralled in a corner near the exit and kept talking to him and telling him..it's ok. We can go but he has to get it together and walk calmly thru the park to get back to the room and I can't let him go until he gets it together ...finally the switch flipped and he walked out and made it thru the park and to the room without incident...
Later that night he started crouching like a sumo wrestler and grabbing at his inner thighs and the frickin  light went off in my head ..I realized he was chapped and was probably why he flipped.

Guess the whole point of this post is 2 fold ...the first being that when autism follows you everywhere you go,you just have to be of the mindset that things will always be a bit different.(it's usually that way with typical kids too ..it's just a different learning curve) There will always a lil extra price to pay and secondly it is so important to keep and open mind when the meltdown comes ..there's some
reason for it somewhere even if you can't see , don't know where it's coming from or can't figure it out...Do the best you can to minimize it, understand it, tolerate it. Just know these kids don't have the ability to shut it off and often the inability to tell you why it's happening.

Something that bears repeating!!!

Imagine having a child that was non verbal or does not have enough language to tell you he is hungry, cold, hot or hurt. Imagine that the child can not tell you that they have a head or stomach ache. The child is sad, angry, frustrated, but doesn't know how to express it. Imagine talking to your child may not help him when he is having a behavior, tantrum, or is not complying because that is the only way he knows how to communicate. Imagine never knowing what your child is thinking or feeling. Imagine being out in public and people judging you on being a bad parent because they do not know or could not possibly understand one iota of how challenging your life is moment to moment. Imagine being lonely, having challenged friendships, marriages or not finding a mate because people "cant" or just don't want to deal. Now, imagine sending your child to school with people who cant possibly care about him as much as you do. Not knowing what is happening throughout the day because he cant tell you and you are not sure if you can rely on those who are left to look after and care for him to tell you. You probably cant.. Imagine being called at work because your child was itchy and took all their clothes off in public or was bullied because of his "differences" or coming home with unexplained bruises that never really get fully explained and you would not be able to verify one way or the other anyway. This child does not know how to make or keep friends and is also lonely. This is a common existence with special needs families. Sometimes not as severe. Sometimes much more significantly severe. Welcome to our worlds. Its super easy to judge from the outside looking in but no matter how much you know or think you know..you have never walked in another persons shoes to experience exactly what that have or do. Whether you think you understand and even if you don't understand at all, try to be patient and supportive ...this applies to all people because you never know what challenges anyone is faced with.

This was taken from McClain special education advocacy page...she is one of the heros leading the charge on the unjust treatment and disregard for our children visiting Disneyland...I think it is very succinct and really makes you stop and think...

Another Fabulous Disney Birthday

Well way behind in posting.....What a day, what a week ..my only purpose is to create memories that Dakota will never forget!!!!

Proprioceptive and Vestibular Interpretation

A Mom posted the other on on a web support group with a picture of her baby standing on flexed toes..(upright with toes folded back and full weight on them)and asking if any other parents have experienced the same...

This was my response....Our kids often seek relief from the crazy things that go on I their  brains and certainly physical aspects of our bodies  most especially when "contorted"will produce things like serotonin to calm the over activity. For instance head banging .
There far more subtle activities our kids will use and seek when needing relief form the static in their heads...

Two specific types of neurological behaviors are Proprioceptive and Vestibular.

Proprioceptive is a flexing or pressing  on joints to create relief from other Neuro pathways that are disturbing an individual...it is quite common that our kids will roll up in a blanket just as they swaddle babies in a nursery, they will get on a couch and dig underneath the cushions for the weight of the cushions to "ground "them ...you can and will see all kinds of actions that seem uncomfortable to a typical person yet it is as good if not better than taking an analgesic ....oh yes and standing on flexed toes or pressing their hands into and upward position so the wrist is flexed is also quite common...

Vestibular is spacial relationship..it is an explanation why our kids have such a tough time with standing in line or respecting personal space or even having exceptional boundaries for their own"space"......they are often restricted by their own bodies to seek and identify space...for instance my son cannot, will not, is unable to extend his arm to lift his elbow to do simple actions like combing or brushing his hair as well as brushing his teeth ...it's not that he is NOT AWARE  it is that his body just does not receive the proper signals to perform ...

These issues can be addressed with an Occupational Therapist and usually when our kids are younger they respond well and sometimes Improve...the repetitive programming will sometimes help however it is just a small part of challenges these kids deal with ..Many can have years of therapy but still are unable to improve...

Just another little bump in the road....

Cocooning....quite common

Cocooning has been a term adopted for the better part of 20 years as a phenomena that people in general have a tendency to retreat to their homes and severely challenge their social skills..hmmmm sound to me like these people might have a little autism ..haha 

Ironically it is becoming all to common for parents and caregivers of Autistic individuals to realize that their lives, particularly  the social aspect are severely impacted simply because of Autism being a part of their homes...

I know it is a challenge for ANYONE to participate and be involved with all the activities and events that are  now happening......When you have kids with this particular disability it's almost impossible.
There are so many variables: first the general demands like therapies and Dr.s Appointments which are numerous, then the moods and behaviors: just about the time you think you are going to load up the car and go, your child has a rip snorting fit you are sweating , upset and know that if you take that kid anywhere he will probably continue ,then there's the dynamic of other family members siblings who have their own needs or a spouse that maybe doesn't participate,on top of all of this the emotional state you own mind is when it is over whelmed perhaps 80 % of the time......it won't do you any good if you are not "present". Lastly there are the attempt to go and participate with nothing but a big fail coming out of it...personally I can't tell you how many places I have gone   Spent time getting dressed and planning on an afternoon, only to get there and within the hour you're leaving because if it hasn't already happened you know that if you don't get out of there it won't be long!

Well anyway the purpose of this post is many of the people on the support groups on line have been recently expressing how they feel socially depressed and don't see any solutions,,,it's very true . I don't think I have any great advice, just observations.You  have to find a way to sanity.......if stealing a moment to literally smell the roses or go outside to take a deep breath and look at the blue sky and clouds works...Do It. If trying to meet someone somewhere and deal with everything that it takes to accomplish that ..then Do It. You just have to do what it takes to give you the most peace. living with Autism can be all consuming and if COCOONING brings to joy then Do It. Donot allow others opinions or expectations to rule you..do what's right for you, your child and your family!

" 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....

Cognitive ability...receptive and expressive language

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??? 

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 !

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 ....

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!

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.

Sleeping.... continued

Well still having trouble with the "machine " but will try to wrap this up....
I know we have to adjust all habits according to our own lives and I know I have been fortunate to indulge Dakota particularly when it comes to sleep but this is one of my priorities and I feel sleep is probably the most important . So I have taken the jeers from parents, professionals and friends who say I should just make him suck it up and get up and live like everybody else does with the demands of life. In My Humble Opinion  we don't live a typical life so in this world I need to decide what's best as a whole ....Sleep 

SLEEP because it gives him a part of his day where he is free of his AUTISM(I hope..I don't know for a fact),it rejuvenates the body and he has enough ailments without not giving his body the ability to rest and relax , yes he may miss out on a few opportunities like going to a program that "warehouses" him or an outing with others who have disabilities too...but this is his world and if I have anything to do with it I will protect what I think is right and take the criticism...for the most part it's worked well for him and it has made life tricky in some ways when it comes to arranging certain things but the over all picture is that it has made a higher quality of life and less  rif raft for the day....

I have one last closing thought ..everyone has to to do what's right for them and their situation...Dakota once slept 12 hours on and 12 hours off ..no naps and I was happy but worn out but still glad that he was sleeping that much..(know many who are lucky to get 3 or 4 hours with their kids on the spectrum) now he is older and on different meds so he doesn't sleep as much and his patterns have changed and they are patterned with the week days and weekends...he sleeps differently ...it's amazing to see how his own natural ability is to cater to his own needs..(usually much later on the weekends ) ..I am grateful and still sleep according to his schedule as I never know when I will need to react to a situation...

I encourage anyone to not listen to anyone. It their child and themselves and do what works for you..I will guarantee that you will all be happier ! Sweet Dreams

Trouble with Sleeping Post

Please excuse the incomplete blog on sleeping..having "electronic"difficulties ..will resume shortly...

Sleeping Challenges

Even as parents of typical children there are always challenges for the sleeping process...although for most it is a matter of establishing a routine, Sticking to it for a short time and VOILA...it's done..
recently there have been many posts on the Autism boards about how different our kids and how much more our kids AND parents suffer from sleep deprivation...

For anyone in the Autism community it is pretty common knowledge that sleep and our kids just do not "make a pair"...many go through the day like a BUZZ saw and still through 9,10, onwards to 2 or 3 in the morning either don't sleep or sleep in spurts by the time they finally crash they may only then sleep for 3 to 5 hours before getting up and doing it again....
Several other parent have reported that their children will be relatively manageable through out the day then when it comes time to sleep..it's like someone gave then a shot of espresso or adrenaline . There are a few who don't have too many problems with sleep but for the most part these are the RARE AND LUCKY ones....

I would be considered one of the RARE oneS as Dakota has pretty much slept for me BUT  NOT BECAUSE I am lucky. It was battle I aquiessed to at the very beginning.....I knew that if I was in this for the long haul sleep was going to become one requirement for all involved.

I myself have always been a great sleeper and perhaps that was luck(as I know many who suffer from all kinds of slept deprivation). From a very early age my mother gave me one gift ...to appreciate and covet sleep! She constantly reminded me that sleep was the one part of our day that you can escape from the rigors of life and have peace...That sleep was a way for the body to renew and heal itself .  That sleep was a gift and to enjoy it and embrace it....As a kid and young adult I tested those boundaries and even was one who could lay down for a couple of hours and get up and go full blast for another day... Birthing Dakota and going through the first couple of weeks with him in the hospital , then coming home to not only a new baby in the house but one who had many more needs  than the typical baby ..things changed and drastically...

First rule of thumb I sleep when he sleeps...because I never knew when I was going to have to be alert and present to deal with anything for a seizure to a trip to the hospital...
Secondly once he is asleep short of an atomic bomb NEVER and I mean NEVER WAKE HIM UP!(in fact right now it is 1030 am and he is sleeping quietly right next to me ;-).  )
I was lucky that we had a cohesive unit in Our house at the early part of this journey that the times I has to wake him up were RARE...and I believe that definitely contributed to his great sleeping patterns..with this rule came accomodations for instance the phone was take off the hook and everything went to voicemail till he woke , the door bell was disconnected, I made no appointments early in the morning or around his typical nap time(tricky but do- able)...I used either soft music in the room or a small fan/ heater for white noise(fan in summer...low heat in winter EVERYTIME) I came to understand that he likes having socks on his feet but no covers, that he flipped from the head to the foot of the bed even after he got out of the crib so just a flat sheet ...Just the little thing you pick up on ...I

Focus for this Year

Over the passed few years my posts have slowly been less not because I don't have more to say mostly because I find allotting time to sit down, log on and compose becomes more and more difficult. Also many times I think of a subject but to stop at that moment and write is always a challenge..then when I actually find the time then I loose the composition of what I want to say.

This year I have decided that I will focus the blog excerpts on deficits and difficulties that Dakota  experiences through out daily living?this isn't a a bitch session or whining ..quite the opposite! Itis designed to be a way to shine a light on those areas that need the most attention to those who may one day have to be the people who need to assist Dakota.....
Spurred on for the little encounter this past weekend at the party..(see previous post)

Physiologically Dakota appears to be able to do daily menial tasks that most typical people can..sleeping , eating, getting dressed, etc..unfortunately this is not the case. As the year progresses I will be writing observations on things that have to be done usually each and every day to make things AS NORMAL AS POSSIBLE!!!  

So the first subject I will focus on is Dakotas inabilty to express pain or describe it. It is simply the same as having an infant there are certain "tells" but for most of the time you have to be intuitive..is he hot? Is he poking his ear?is he chewing?is he unusually irritated?  

Now once you determine he is sick,then you have to figure the appropriate actions.just going to the doctor can be a huge pain in the ass..I know it is for almost every body but with him there are so many issues with the doctors office I can't begin to enumerate them. . .wait time,others who are potentially ill,behaviors, the examination, people coming in and out of the room, the poking and prodding (typical people can usually tolerate, not so much for our kids) and then if there is meds and you have you go to the pharmacy after wards ..well it's all a challenge to say the least ..

There are these issues...Dakota DOES NOT know how to blow his nose..I have tried for years to explain and show him how to do this and he just can't do it...It is still necessary to utilize an infant suction bulb to extra tall the nasty stuff from his nose when he's stuffed up(yuk).He also doesn't know how to spit,so getting him to expel phlegm  is impossible ..I even asked them at school to have his aid try to teach him to spit ..gross I know,but necessary!Additionally there his aversion to the toilet in general...I cannot get him to puke to spit or do ANYTHING  other than the traditional uses ..he is absolutely freaked out about using the toilet this way ..so when he is sick I have to put him in the shower to let him upchuck or use some type of bucket or towel..I know too much information!

The reason I am taking this path, is that parents and others who come to the blog need to know that whether their child has these same challenges or different ones they are not alone . Whatever their child's issues are it's ok to be frustrated and it ok to talk about it and seek out information for others.You never know, when you hear about someone in a  similar situation there may be a solution buried in the experience....

So for now this will be the focus this year. I hope it will certainly help others to realize some of the  simplest things we do on a daily basis ...we take for granted! Stay tuned.

It's a New Year

2014....man when I was growing up I remember many times trying to figure how old I would be at the turn of the century....I never thought passed that...and I certainly never pictured myself this old and with a man child that I would be caring for till the time comes for me me to pass.
This is my destiny and I accept it willingly. My son did not ask to be born and not to be born with Autism..
We attended a small party this passed weekend and it was the first time in I don't know how long that I was able to actually clean up and dress with make up and jewelry !!!what a treat...it was just one of those times that everything fell into place the right time, the right place and the right people which made it stress free for Dakota which I turn made it stress free for me!!!
When I got to the party I made the comment that I was so happy cuz I was able to do this and a voice comes popping out of the crowd ..why , ? and replied well I have two people to prepare and by the time I get to me I either don't want to take the time or I am out of time  or I am just ready to go so I skip on myself ...and this voice says oh mommy has do everything for her son ...he was teasing me but with a purpose ....and said look he may appear to have abilities but this kid doesn't do zippers or buttons or tie shoes for that matter ????these are all things that "people" in general don't think about ..

Don't want this to sound like a rant or whine just a statement about assumption...and judgement...I have really tried to prevent myself from judging others and the situations they are in our how they conduct themselves because simply we just don't know what is going on in their world...

Perhaps this is a little vague or not exactly the most pertinent to autism but for me it is a perfect time to remind all of us that although our path may be the same each journey has it's own challenges and it is the perfect time to start fresh with out perspective ....Happy New Year