I'm BACK!!!!!!

It seems all too often I have apologized for gap in my posting on this BLOG. I have come to realize that I will probably be apologizing many more times  as this too is the nature of AUTISM.
Many who live in our world will say that every single kid with Autism is different and that is so true.. It is a peculiar and mysterious disorder and it makes you crazy and frustrated more than you can imagine. I think you develop a tougher exterior and emotional threshold as a defense mechanism. It also makes you mentally  exhausted most of the time. That's a causality of the disorder......You are constantly trying to decode behavior , anticipate environment and analyze your child's actions. I cannot emphasize the word EXHAUSTING too much.

In our home things have been unusually out of sync for the passed several months and I have found that a little of the AUTISM has rubbed off on me... It's funny how it effects you even tho you are not the one that is Autistic. I have developed routines around Dakotas schedule and since he has been changing things it has become frustrating for me , as I had molded my own habits around his ...Oh what a tangled web we weave!!!!When he changes, then the time I have allotted to do something goes down the tubes then I find myself upset , thrown off kilter and scrambling to accommodate the change so I can get done what I needed or wanted to do.  AND for the majority of time I find myself not accomplishing things ....hence the frustration.

This too ,  is a double edged sword because when you see your child welcoming change it is a positive experience , yet you always worry what the downside is... ANOTHER THING IHAVE WRITTEN ABOUT BEFORE  about be careful what you wish for because when you see the diminishing of one behavior you can bet the bank that another one will replace it AND it could be worse.An example would be chewing or the finger replaced with twisting and pulling hair out of the scalp?????Gotta choice? I thought I knew what I was doin but here I am again with balding holes on his scalp and me flipping out about it...

Well once again the routine has changed and Dakota just came flying thru the door so it is time to close this down and get on with taking care of him...
I hope you will all stay tuned and NOT  GIVE UP ON ME .. PLEASE know I will continue to post  all I have to do find the time to sit down and compose!

Tired?!?!?!

I have been struggling ...
trying to get back into a groove with posting on the BLOG .. So many factors BUT really no excuses -  Just circumstances... After coming back from the Disneyland  Birthday have had a few weeks of trying situations.

Dynamics of the house and Dakota's routine have been jumbled...He usually spends time with his Pop once a week and lately he has been resistant.. The strange thing is  I am seeing this also occur in others functions that are normally no problem. For instance I took him to get his hair cut and he refused to get out of the car. VERY STRANGE. Dakota has always presented challenges in certain situations and I have always chalked it off to his way I saying " I just don't want to do it". However I find myself over and over again analyzing the action wondering if it is more, if it is a deliberate change in routine or even worse and God Forbid an eruption of more severe issues...Like the thing about him refusing to get out of the car I am wondering if it is not a glimmer of 'AGORAPHOBIA"..Then I say to myself "Oh Stop It " you are trying to make it worse than it already is.

Never the less why I titled this Tired is because I have been feeling very tired . Just finding reasons to do things the easy way and skip things that are part of normal everyday life and after a few weeks of this I came to realize that I am not physically tired  It is all mental.hahahaha
I mean there are a few lags here and there but it is all the crap that swirls around in your head that just exhausts me...I was thinking its just me getting old, or I have done my fair share for the day BUT  NO its not that at all the feeling of being physically tired is directly from the mental gymnastics.

I do not want this it sound like I am whining but parents of "typical" kids just DO NOT KNOW HOW FORTUNATE they are ..The simple fact that those kids get up in the morning and barring bullying, fighting with sibs  or other obstacles in the day they can successful get through a day with out assistance from their parents ... From the moment our kids wake up until they lay their heads down at night it is a marathon... AND YOU CANNOT "SCRATCH THE RACE" ..I wore a pedometer for about a week recently and I averaged 10,000 steps without breaking a sweat ...AND that was just around the house trying to accommodate my sons needs for the day-- and I am still fat!!! Hows does that work?
Think the whole point of this post is this... You work and work at caring for your child Everyday can be a new challenges or it can be a day of rigidity and sameness and what transpires is an all out effort to just make the day a little better and a little easier to accept for our kids and when the day is done you have had it  You are TIRED ...BUT usually more mentally tired than physically .  Bottom line is this you cant give up , and for the most part you are alone and often times wondering how its all going to end up   BUT you will never step off the "Hamster Wheel" .

Disney Birthday Extravaganza

Happy Birthday Dakota------
Well its been almost a month since I lasted posted and any guesses as to why??? Perhaps a certain someone had a Birthday Celebration!!!!

Yes indeedy we spent the better part of a week at the Disneyland Hotel with all the trimmings- including a a room on the top floor where we could sit out on the patio and watch the fireworks every night, a dinner at Gooys Kitchen with his friends, a day at both the parks with friends who spent the night after Goofys Kitchen and LOOK AT THAT CAKE???? In honor of CarsLand he had a full blown replica of Lightening Mc Queen  driving thru Radiator Springs with the Cozy Cone Motel to boot.{ I have to admit I did think of Madonnas CONE boobs from years ago but decided that it was still OK since he is an adult now anyway!!!!!}

We had a great time and really only had one "glitch" { behavior} of any significance  SO I call that SUCCESS!

I know it seems like a lot and many would say too much .... Here's how I see it..
 First and foremost  Dakota has enough crap to go thru everyday of his life and if this gives him joy and maybe allows him to be "normal" for even one minute or hour its all worth it...
Secondly this kid does not ask me for Nikes or Air Jordan's, iPods, iPads, any type of clothing, to go to sporting events or concerts{ although he likes them,he doesn't ask for money for movies or cars or booze ----He loves still being around me , he doesn't break curfew.he doesn't go out and get in trouble , he doesn't wear his pants around his knees and he hasn't brought home a girl pregnant ... So how tough is life with him????I think sometimes I am blessed to have the kid I have instead of a typical one . Don't get me wrong I long for Dakota to be able to do all the other things BUT sometimes we just have to realize that things are the way they are and instead of whining about it just get up and get on with it>>>.

ALL IN ALL  A GREAT TIME WAS HAD BY ALL ... SAVE THE DATE CUZ i AM SURE WE WILL BE DOING IT AGAIN!

FYI

Just an FYI if you ever want to find a particualr subject use the little "search" strip directly to the right.. for instance type in Silent Segregation and hit enter and all the posts will pop up... I know most of you are computer literate but this is for those who are not! 

Rant about Silent Segregation!

After the recent events reported about the American Airlines Pilot refusing passage to a Mom and a 16 year old Downs syndrome boy I had to prepost my rant about the Silent Segreagtion.... I dont expect everyone to totally embrace my son and his disability I simply want to be treated as others are! I witnessed so much discrimination and segregation eve  now 50 years after the Civil Rights act is law it just saddens me--- I hold no specific person accountable ACCEPT for everuone TAKING A MINUTE TO THINK HOW THEY WANT TO BE TREATED AND EXTEND THAT SAME IDEA TO MY SON AND MYSELF. There is another post back a ways titled Silent Segreation but for now this was a FB posting in reaction to this last fiasco ....
Oh Kristie I cannot believe this BUT I have to say I have written about this on my BLOG about most especially in schools and the school system how its like the Civil Rights act never was adopted--- I call it the "Silent Segregation" and it speaks to how our special needs kids clasrooms are always the "portables" and always in the back of the school segregated from the other classes and kids-- BUT even more so the TEACHERS who should realize that they are role models for their "typical" children will allow OUR kids to walk right by them and the TEACHERS  totally ignore them just like the children--- Dont they know that they have little minds that they can change or at least mold  BY setting the example to include and acknowledge our children even when they walk by a class or classroom of typical peers??? I want to give them {teachers} the benefit of the doubt and hope they are just wrapped up in their own day BUT I can tell you I witnessed it over and over for years and it breaks my heart that one little jesture by saying Hello there _____ how ya doin? And all those kids in that class see that their teacher speaks to them{our Kids} maybe they will do the same... One last gripe ---- I have even seen how special Ed teachers are shunned by other teachers and thats just as bad... WE ARE STILL IN THE BACK OF THE BUS AND ITS TIME FOR US TO MOVE UP TO THE GROUP...We dont need to be in the front just in the middle with everyone else. 

A Big Dash of FAITH

There isn't a day... or a night that does not go by that I dont think about Dakota's future, Once I am no longer here to orchestrate it...I also know that I am NOT the only one who has or will struggle with this issue.

Again and not to sound like a broken record BUT I know that Dakota has so much to offer as long as there is someone who will take the time to recognize it and my greatest fear is that he will just be medicated and left to "rot in a corner" because there will be NO ONE who will have any special tie to him...He is after all a person with no relatives and will be at the mercy of caregivers. As much as I like to believe its all good out there and there are loving and caring people who will surround him ; the pessimistic side of me thinks differently. How can you invest your whole life to providing a qualtiy of life for a child, a person your created only to know that when you are gone,not only do you not have any control over it but worse that your biggest fear has come to fruition.

You can plan and plot and pick people to carry on but again how do you know that it will all work out?????? YOU CANT. So I guess this has to come to a poit where you have to LET IT BE.

One of the Moms I met years ago, who is also one of my biggest teacher/mentors said that she had come to the conclusion that as long as her son ot his basic needs met even if it was by a stranger she thinks he will never even miss her.. I have to hope that maybe she is right . But when you have a kid that wants and expects you to lay down with him every night so he can go to sleep -----who will be there to do that for him????     N O     O N E .

My heart aches to think how radically his life will change when I am no longer here to arrange, fix and provide. He has enough to deal with just with the disorder .....
Unfortunately I have no real answer of solution...Many I have met and discussed this with have lots of different views but none of us have a solution. I sit here and cry as I write this  because it is truly helplessness ...

We as parents and caregivers have to do the best we can to "road map" our kids and their routines, schedules wants, needs and preferences and put our trust in those that come after us to love our kids enough to make their life as pleasant as possible .
One thing I have done is to start documanting as much as I can about our daily lives in a binder and also files in the computer so at least there is a working template of where to begin and finally we have to season it with a big dash of faith . Faith that our wishes and our childs life wont be anymore difficult that it has to be.

The Yin and Yang of Autism

Today a mom posted that she was at an "attraction park" and her child had trouble understanding  how the showtimes worked and before she knew it he had eloped and was at the car banging on the window to get in -- CUZ in his mind it was time to go --- I cannot tell you how many times I have had this experience. For those of you with typical kids you get a cranky one or one that decides to take off on you or even one that whines for candy or a balloon ..but I dont think you could even imagine how these types of behaviors just HALT EVERYTHING. Its just the end . You just need to gather your marbles and go home. Some would say "Oh I would never allow a child to dictate my day that way " all I gotta say is walk a mile in anyone of our "Autism Shoes" then tell me what you say !   

I have bought tickets to the Prom, admission to a Haunted House, the Grammy Museum,oh the list goes on and in each of these cases Dak never made it...wasted money??? some would say . What I say is all I can do is present the opportunity and hope he takes it. You run the gammit of emotions your are upset that the money is spent , your are sad cuz your kid is loosing out on an event ,you are disgusted and think you will never do it again then you get some time in thought and you become melencholy and decide that it is better to try and fail than to never have tried........ 

I have said this over and over that I only know what works in our house and for the most part my main goal is to allow Dak to pretty much do what keeps him happy...He already deals with a horrible disorder that turns his thoughts into raging crap so why complicate his life and put him thru any more stress. I know that does not prepare him for the world but I dont think any of us were prepared for Autism .

I think the most frustrating thing is when you have those Ah-Ha moments or what I call shoulda had a  V-8 moment when you see a sparkling ray of brillance come from your child. In that moment you know that he is lost in this world and the world is loosing out on his brillance. Mainly because people will not sit still long enough to notice when things like that occur. Or they are so wrapped up in their own world that they just do not notice because they have effectively tuned him out. Surely a kid like Dakota couldnt have anything worthwhile to contribute. {That is for any child with Autism not just Dakota} I have seen it happen even when people dont mean to do it...Its very odd to be in that situation .

Never the less you, as a parent struggle with what to do and how to handle incidents like this and you get very frustrated , depressed and even start believing that things will never change and you will never see an improvement .  THEN a lightening bolt hits
The most recent case with us; I had just finised balling my eyes out the day before because Dakota has just been having some tumultous days. I have been trying everything to get him to get out to walk in the park or the track, to play a board game , to read  just anything and I was being met with some pretty agressive behaviors and it has been tearing me down. So yesterday they start talking about a Who Concert that was cancelled and tickets were issued for December 17,1979 {mind you he was not even born yet} and he looks at me with a deadpan face and says " that was on a Monday" and "Chritmas Eve was on a Monday that year too! "Now mind you this is a kid who has trouble counting change and I knew better than to call him on it...But of course I grabbed his iPad Calendar and sure enough it was a Monday . I swear it just about took me to the floor.  I dont get it, I dont know how he does it but more importantly no one has ever taken notice ... I realize it is a fleeting skill but it is enough to encourage me to NEVER GIVE UP .... Because I know its in there . and I just need to keep coaxing it out.  Because this is the Yin and Yang of Autism.

3 am confessions

Again I find myself behind or at least feeling guilty for not writing the past few weeks-- I think I am overwhelmed and actually do not want to admit it. Schedules and routines are changing and it is not for the better in my case. Its funny how you acclamate yourself to the rigid behavior of your child and when they change, you are the one who really bears the brunt of the change... It almost makes you feel like you are the one who is Autistic.

I dont know what is happening but Dakota has started up with behavior that I have seen before but thought we had conquered it....Thankfully for the most part it has not been severe. There were a few incidents that were intense but I think whats bothering me the most is the frequency..Everyday this past week in particular there has been something.

Theres an old saying with Autism and that is "be careful what you wish for" --- meaning when you are anxious to get rid of one behavior they have sometimes the replacement behavior is worse. It makes you cautious and especially as we are nearing our 26 year down this path I am at a point where it is not that damn important that I push my adgenda ;I just want as much peace as possble.

Many might say that I am an enabler and thats Ok with me..... I really dont care thats one thing that living with Autism has brought me;a sense of not having to answer to anyone else about what I feel is right for us in this house.I realize the importance of attempting to "mold" Dakota into a person who can blend into society but the simple fact is that he as well as most Autistic indivduals even the highest functioning ones will always stick out one way or another. At this point it is more about educating those that ARE NOT autistic how to accept and embrace these individulas into the community. {I know this is a common theme in my posts}

I will close with this.. I have so much swirling around my head all the time and so much I still want to write about its more about finding the time to sit in front of this computer and composing. Stay Tuned 

RePost on My Dream for a "Center"

Theres been a lot of buzz recently on several support groups about developing an Ideal Center for Autism-- My take is that the population is exploding and quite frankly people are begining to realize that they might be fighting with the school districts to get services  NOW, but the REAL REALITY is that our kids will far outlive the services provided by the schools and Regional Centers for the most part are  big machines that do everything they can to NOT give you services.  Ultimately they are certainly not going to be very instrumental in providing most specifically for Autism--- Hence we have to Dream it, Imagine it, Create it, Champion it and Build it.

With that I am reposting my intital outline of  my dream for "A Center for Autism" coupled with and addendum about the Center-- I hope it will touch new people and find more people interested in making it a reality.
THE VISION FOR A CENTER

SERVING
AUTISM AND P.D.D.SPECTRUM
[PERVASIVE   DEVELOPMENTAL DISORDERS]

PURPOSE: TO PROVIDE A “ONE STOP SHOP”
FOR AUTISM

THE VISION IS TO PROVIDE OR ADDRESS EVERY ASPECT OF LIVING WITH AUTISM ON AN ONGOING BASIS.

THIS WILL BE INCLUSIVE OF PARENT AND SIBLINGS SUPPORT, ACADEMIC AND LEARNING ENVIROMENTS, THERAPIES, COMMUNITY BLENDING,

JOB TRAINING, RECREATIONAL OPPORTUNITIES AND DAILY LIVING SKILLS.

THE FACILITY: SHOULD HOUSE THE BEST OF ALL WORLDS. THERE IS A NEED FOR A COMPUTER LAB, LIBRARY, MUSIC ROOM, SCREENING ROOM/THEATER, ART ROOM, KITCHEN, GYM, YARD AND GARDEN AREA, WITH HOPE OF A POOL AND SPECIALIZED PERSONAL NEEDS ACCOMODATIONS. ABOVE ALLTHE FACILITY SHOULD HAVE THE ABILITY TO PROVIDE SPACE FOR PARENT AND SIB SUPPORT AND SPECIALIZED CLASSROOM AREAS FOR PRIVATE SCHOOL.

THE EXECUTION: THE VISION IS TO STYLIZE EACH PROGRAM FOR THE INDIVIDUAL.JUST AS WE REQUIRE THE SCHOOLS AND OTHER AGENCIES TO ADOPT

INDIVIDUAL EDUCATION PLANS SO WILL THE CENTER.EACH FAMILY WILL DECIDE WHAT INVOLVEMENT AND TO WHAT EXTENT THEY PARTICIPATE. WHETHER IT BE ONLY FOR SUPPORT OR RECREATIONAL OR FULL SERVICE INCLUDING SCHOOL AND LIVING SKILLS.

THE MANPOWER: THERE WILL BE A GREAT NEED FOR CREDENTIALED STAFF AS WELL AS PROFESSIONALS IN MANY AREAS. THE HOPE IS TO GENERATE THE CENTER ON AN EMPHASIS OF VOLUNTEERS AND PARENTAL INVOLVEMENT.

THE FUNDING: IT WILL BE IMPERATIVE TO SECURE FUNDING THROUGH SCHOOL DISTRICTS AND OTHER AGENCIES TO SUSTAIN OUR EXISTANCE BUT IT WILL BE OUR HOPE THAT PERSONAL INVOLVEMENT  AND COMMITMENT WILL ALLOW US TO THRIVE.

WE NEED TO ESTABLISH A FOUNDATION OR ORGANIZATION AS NOT FOR PROFIT AND EXPLORE ANY AND ALL OPPORTUNITIES TO GET SPONSERS AND HAVE FUNDRAISING CAPABILITY.

THE BIGGEST HURDLE IS TO FIND A PLACE AND GET STARTED AND MOLD THE CENTER INTO EVERYTHING IT CAN BE FOR AUTISTIC INDIVIDUALS WHETHER THEY ARE 3   33 OR  63

THE PUBLICITY: WILL RELY  ON A GREAT DEAL OF “WORD OF MOUTH” WOULD LIKE TO ESTABLISH A WEB SITE AND SERVICE ALL WHO HAVE ANY INTEREST INCLUDING SERVICE PROVIDERS, PROFESSIONALS AND TEACHERS.MUST CONTACT THOSE WHO ALREADY WORK IN THE RELATED FIELDS TO HELP US FIND THOSE WHO NEED AND WANT HELP.

THE RELATED SERVICES: ALSO PLAN TO HAVE SERVICES SUCH AS SHUTTLE SERVICES, ESTATE PLANNING, REFERRAL TO ADVOCATES, ASSIST WITH MEETINGS AND I.E.P.’s, SOCIAL AND RECREATIONAL ACTIVITIES AND JOB TRAINING
THE SUMMATION: THE CENTER WILL STRIVE TO BE WHAT EVERY PARENT WANTS FOR THEIR CHILD.
THE LEAST RESTRICTIVE ENVIROMENt
AND
A FREE AND APPROPRIATE EDUCATION
WITH A CHERRY ON TOP!

Addendum :
A CENTER FOR AUTISM
IN ORDER TO FURTHER EXPLAIN AND EXPOUND ON THIS IDEA I WANTED TO ADD SOME ADDITIONAL THOUGHTS AND IDEAS:

FEATURES AND ACCOMODATIONS OF "THE CENTER"

The idea is to be broad and accommodating to all kinds of services for Autistic individuals and their extended families-- A central kitchen that can be placed adjacent to the theater with an "candy Counter " like you see at the movies would allow us to train our kids with our people how to work and be appropriate in a working situation at a theater--A kitchen that could also accommodate catering and coffee service to train our kids how to become gainfully employed with abilities to work in the food industry { footnote there will be meeting rooms open and available to organizations like Lions .Kiwanis,or Rotary free of charge but the catch would be that our lids would be responsible for coffee service or any other needs they might have.}

We also need an exercise area with equipment to help our kids learn the importance of being healthy. Partnered with cooking classes and seminars on eating .cooking and exercising .

A room for decompression--- and even a nap area or quiet room for anyone--

a sensory room--self explanatory

I already mentioned meeting rooms for support groups or outside entities

Art room and Music rooms directly in back of the Theater so we can encourage and produce our own plays and talent shows--

The theater would be large enough to use as a fund raising venue and training for our kids-- we could have movies as well as live productions .

The yard could have a garden for those interested in that as well as allow those who are interested in honing skills for landscaping Hopefully a pool with therapeutic training as well as recreational opportunities .Even allow those who are interested to learn how to service a pool and make a job opportunity out of that.

Of course a library and rooms for study or homework???? and even a private classroom is possible .

The possibilities are only limited by or wants, needs and imagination---

One last thought at this time is the recreational part of this "Center" which would be to offer outings and trips .
Potentially pair up sibs with age appropriate autistic individuals for certain activities and to involve the typical community in as much as we can to give our kids the exposure to appropriate social interaction and to educate the public how to bring our children into the "fold" of society.

Ok folks please spread the word  and let your imaginations fly -- whats that saying "We are only as strong as our weakest link" Pass this on-- Dream your own "Center",  Seek out people who can help us make these kinds of ideas a REALITY,  not for us but for our kids and those that come after them!

No Apparent Reason

Wow this is a loaded subject--- I cannot tell you how many times I have seen Dakota "blow up" and the first thing that comes to my mind is "where the hell did that come from?" It been a years on this journey and I feel like I have an answer --now. I guess I consider it "on the job training" . ....Again I hesitate to say, answer but more like observation and summation---
Additionally among many of the Autism support groups online and Autism blogs you read over and over parents and caregivers having the same remark or reaction: {out of context and totally generic} My son just starts pinching or biting for NO APPARENT REASON 
OR
My daughter just started banging her head  for NO APPARENT REASON
In my Humble Opinion I do not believe that these actions have NO APPARENT REASON--we may not be able to see what it is that is bothering them or we may not understand their language but in my heart I believe that these actions absolutely have a purpose.

Yesterday was what I call a "I should have had a V-8 moment"-- Don't know if you remember the commercial years ago where the person suddenly discovers that the choice they made should have been the V-8 and they hit their head with an open palm and say "I should have had a V-8!" Well yesterday I was attempting to get Dakota to go bowling-which has been a preferred activity in the past....however for the most part I have always made arrangements for him to go with his friend and mentor Brad and one or a couple of peers -- to develop his independence and let him get away from Mom for an afternoon--Well Brad has unfortunately passed away and since then he has been resistant to bowl but has done it a few times-- not with much success but at least done it--- So fast forward to yesterday and I drag out his bowling ball and all of a sudden he FLIPS OUT.......he swacked at me and started to scream --and I found myself saying AGAIN "where did that come from ??? that was for NO APPARENT REASON." So the wheels start grinding in my head and I am trying to analyze what triggered this behavior--- --In the meantime I have found that the best thing is to let him "defuse" a bit by letting him be; while my mind ungulates all the factors-- within about 15 minutes he started crying and before too long it was painful gut wrenching emotion--- I asked him what he was feeling and why didnt he want to go. After about 10 minutes he professed "hes gone , he left me and I cant see him" I knew right away he was talking about Brad----- It was really the first time he mourned the loss of his friend. Brad has been gone almost 2 years and it has taken this long for him to come full circle to realize exactly what has happened --- then he asked me is Brad was with his grandpa and I told him that hopefully they were there together and on some level they were watching over him{Dakota} from the "other side".   

I guess the point of all this is my opinion that there IS A REASON for the biting.pinching, hitting, screaming,running, eloping, spitting,or whatever behavior you might encounter. God didnt make these children and adults with out feelings and emotions  he just left out the ability to portray them . This is their disability and I guess on some level we have to be "super" human to realize and recognize that their actions are purposeful/ We have to be the "shaman" who deciphers "the code"

The next time something like this happens just take a deep breath and say to yourself "Ok theres something going on and I am gonna do my best to figure it out-" It doesn't always come to you in the moment sometimes it will be hours or days later when you finally have that "V-8 moment"  Leaving yourself open to that and knowing there is a reason  eliminates shutting yourself down and not being receptive to answering your own question==="where did that come from?"
Doing that helps you be a better caregiver but more importantly validates the individual. It also opens the door to teach better ways of communication . When they "get" that you understand  them they can make improvements in their ability to tell us what they are feeling .
Just remember its NEVER FOR NO APPARENT REASON!  

"Stuff" I dont like to write about!

I woke up yesterday with a few scratches and scrapes and even a light bruise--- These are the things that create such complicated feelings and emotions in those of us that are caregivers.Dakota has had a couple of fairly aggressive days and although I am confident of the triggers { will write another post on triggers --soon to come} ; I believe that we all second guess our ability to "mind read" what our kids are going thru.When you live with Autism the years seem to give you perspective and observational skills that make you feel more "sure" about what is going on. BUT when you hit a day or days, sometimes, weeks, months or years where you are facing behaviors that make your kid crazy YOU WILL ALWAYS SECOND GUESS YOURSELF. Even more you often shutter to admit or mention these events to anyone. Not because of shame but moreso because of the inability of the typical community to grasp that these behaviors are what the disability is. These are the things that people referr to as"what goes on behind closed doors". Its not that it is abuse or something unacceptable, it is merely this crazy disorder making the brain inside our kids go WHACK. They have no filter, no ability to be angry without being physical . There is such a huge feeling of loss of control it is enough to drive you to be "provoked " by the behavior. Often times the best and quickest resolution is NO ACTION and believe me it is often times extremely difficult NOT TO REACT. {AND we are the caregivers that get this disorder can you imagine how  Joe Q. Public would react?}

I think the purpose of this post is two fold---1. to speak to those who deal with and live with Autism --who have had days like these and say -- its is part of the nasty, ugly, disgusting , son-of-a- bitch disorder and  "this too shall pass"--- Its OK and we do not live in an Ozzie and Harriet world where everything and everybody is perfect-- so do not be ashamed and do not be afraid to talk about it--this is a learning process for all of us and we have to allow the community to learn from us.
2. for the community or public side of this is that our kids are not monsters, that they are not INTENT on hurting or defacing property --that this IS THE CONDITION OF THE DISABILITY. That their fear or shunning of individuals who have Autism is without merit and that if they would take a few minutes to learn about someone who has Autism that they can greatly improve the lives who live with this crappy thing called Autism.

We need to be aware that more and more individuals are coming into the community with this disability. That these people have skills and abilities {perhaps very "tailored or narrow"} but we need to bring them into the patchwork of the community and the only way that will happen is by tolerance and accepting someone who may not be just like you.

Thoughts about Mothers Day

I wanted to take a few moments to reflect on this day for those of us who add Autism to the mix-- I know that Autism is not exclusive to this "condition" but it is the factor that shades my views---

When Motherhood came upon me I really didn't have many set ideas about how it would be or what it would mean to me---I come from a very opinionated place on many things but motherhood was rather unexplored territory as I was an only child and really wasn't exposed to lots of "child-rearing experiences"  Referring to the previous entry I guess I lived the "Mothers Lie" of just wanting a healthy baby-- ha ha The joke was really played on me!All of that being said  I think each woman approaches Motherhood with great intentions, plenty of enthusiasm and a kinda fly by the eat of your pants attitude. 

I don't any of us really ever think that we will be the ones who will get that "not so perfect" baby -- It always happens to someone else . Its something you read about in a book or newspaper or moreso online OR you hear about it from a friend or colleague. AND even more scary is the scenario that you start out with what appears to be a pretty "typical" child and find out months or years later that it is not the case---

I guess why I write this is sparked by one day that is celebrated by just about everyone Being that everyone even Jesus has a Mother! And Mothers Day is portrayed to be the day that Moms "take it easy" as the little ones prepare simple breakfasts in bed , Sign or make cards and treat their Mothers to a day of pampering ;all to show how much they love us. 

BUT there are thousands of Moms who just don't have that kind of day-- That's not to complain or whine; that's not what this is about, its about recognizing those who don't get those accolades they so richly deserve and to bring awareness to the masses who don't realize that perhaps someone they know is not having the same glorious day that they had. 

Many Moms today had just another day-- helping their child through that day  bathing or feeding maybe even shaving-- Performing routine tasks to make sure their child has a kind of day that makes the child happy. That equates to Mothers happiness. Many will go with out a whisper of "I Love you Mommy" or "Happy Mothers Day" Because even tho she knows her child loves her he or she is not capable of expressing that sediment. Lots of Moms probably even had more challenging situations where behaviors reared their ugly heads. Believe me no one wants to go around any day with behaviors --AND on Mothers Day well its just the nature of the beast.

Guess what I am trying to say is to all the Moms out there  Is Happy Mothers Day from someone who is walking your Moccasins down a similar path and although it did not come from your child I know your pain as well as your joy -- You have many things to be thankful for BUT you also have the right to mourn a little too!

Someone elses WORDS about Mothers Day

I have my own perspective but found this on one of the "Autism Boards" andfelt that it was worthy of a "re-Post"

Happy Mother's Day: Mothers Lie
By Lori Borgman
Expectant mothers waiting for a newborn's arrival say they don't care
what sex the baby is. They just want to have ten fingers and ten toes.


Mothers lie.
Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips,
button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.
She wants a baby that will roll over, sit up and take those first steps
right on schedule (according to the baby development chart on page 57,
column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons
by the billions.

She wants a kid that can smack the ball out of the park and do toe points
that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.
Maybe you're one who got a baby with a condition you couldn't pronounce,
a spine that didn't fuse, a missing chromosome or a palate that didn't
close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't
see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even
years later, took him in for a routine visit, or scheduled him for a
checkup, and crashed head first into a brick wall as you bore the brunt
of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will
be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.
Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to
a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the
well-intentioned souls explaining how God is at work when you've
occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting
you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the
motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in
perspective, so let me do it for you. From where I sit, you're way ahead
of the pack.
You've developed the strength of the draft horse while holding onto the
delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my
sister-in-law.
You're a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed
Up and No Place To Go, her latest humor book now available wherever books
are sold.

Its a Matter of Perspective!

Last week I was speaking with a friend who has a {typical}son about the same age as Dakota. He is a very good kid who has not given her any real trouble -- which is amazing in these times we live in. He is a quiet unassuming kid who graduated high school and took some college and is now working in a decent job. She and her husband are stellar parents. They have set a great example for him and given him all the love and support he could ever need or want---Well last week it comes out that their son has a child on the way --- OK its not the end of the world BUT mom is deastated cuz she felt that some how she failed her son ---that he did not use the knowledge he was given and now has a baby to support that he is not ready for-- For Mom she feels like she is being robbed of  some memories that are suppose to come BEFORE A BABY.-- OK OK again in these times it is even RARE that a wedding  shower comes before a baby shower  but that is the way it supposed to be---and of course Mom is sad cuz she cannot sheild her son from some of the harsh realities of this world-- Need;ess to say this is where my rather out there philoisphy comes about OUR KIDS AND AUTISM...\
Typical parents with typical kids go through so much {just like we do --BUT diffewrent} boyfriends and girlfriends and bad realtionships and break up -- getting in trouble with the law -- drugs-- car accidents --rotten grades,etc. Many would say all things that some have to deal with BUT I think there is always something that happens and very rarely is there even a typical family that doesnt have "some warts or faux pas" to deal with. AND many would say "thats just Life" -- They are right! We never know what is going to be thrown at us; we just need to be resilent and relentless.    

Where my "perspective" comes in is here--- Every waking moment, those of us who have kids with Autism, wonder when its going to stop or at least slow down-- we hurt and ache for our kids to just be typical or to have a typical moment. We muddle through all the differences and always want to change or sheild our kids from being anything but 'NORMAL" Then I hear something like the story above and and I think  WELL I have a kid who is a young adult and he still loves his Mom and wants to be around her; He hasnt gone out and gotten drunk and ended up in Jail; he hasnt wrecked a car or broke  curfew: he hasnt stolen money from my purse; he doesnt walk around with his pants around his knees AND he hasnt brought a girl home pregnant!  
SO JUST HOW DAMN BAD IS AUTISM?

Please dont mis understand every day is a challenge but the bigger message is we have to find the silver lining ; we have to make the best they we can for our kids we have to keep positive in the equasion. We have to realize that these kids know what we teach them  and the dont need any more negatives in their lives.
The old saying when God gives you lemons you can make leonmade-- Its up to us to add the sugar! 

Wow Viewing Stats

I just wanted to take a few minutes and post about the Stats of this BLOG-- When I set out to do this  my intent was to vent but also share what we go through as a family unit Living with Autism. The 'GREAT HOPE"  was if I could help one other person feel better or solve an issue or even just let them know they are not alone I would accomplish my goal.

I started in 2005 and although I have had a struggle with posting more than 4 to 5 or 6 posts a month I have always been happy what I wrote about because ti was the issue of the hour day or week. Often times I go to bed and the words swirl around in my head as I try to compose what I want to post and by the time I get to the computer it has all changed. Finding time to post has always been an issue as well since I am the main caretaker of the home -- So many times you will find my posts  time stamped at 3 or 4 AM -- thats the quiet time and time I get to think and compose.

Never the less I just started watching the tracking and I have to say that I impressed myself -- the blog has been viewed over 3200 times! While that may not  be thought of as voluminous over the course of years I have written yet I am elated that with no promotion or affiliation it is at least getting to people who may get something from ,my experience!

The more exciting new is that I have been viewed on 6 of the 7 continents in our world and that makes me so so so incredibly proud. The STATS  revealed  that Germany, France, Spain,United Kingdom, Czech Republic, Slovenia, Netherlands, Morroco,Israel, Brazil, Korea, China, India, Malaysia,Australia have all accessed my blog---WOW 

My hope is that my words have helped each and everyone of the people who have viewed my blog. THANK YOU TO EVERYONE AND I HOPE THAT some how, some way you will pass it on to others who might use this as another tool in their family situation. I AM SO PROUD  but more important I will continue to write with the expressed commitment to do whatever I can to help anyone BY my experience-- I don't pretend to have answers I just know what works for us and somehow I hope you will be able to take the info and make it work in your situation... Please feel free to comment or write -I would love to hear from you!
AGAIN THANK YOU!

APRIL IS AUTISM AWARENESS MONTH!

The CDC just announced that autism rates are growing by leaps and bounds NOW 1 in every 88 births another child is born with Autism-- It is an epidemic  these children are a huge piece of our communities and we have to help people understand and INCLUDE them.
PLEASE everyone change your porch lights to BLUE for the month of April to bring awareness and let others know that you or someone you know stuggles with the damn disorder!     

They Have their ways of Telling You!

You would think after the better part of 25 years I would be able to size up any situation with Dakota--The caregivers and Parents of these kids all have unique situations but after awhile its almost like having a baby that cannot tell you if something is wrong or if they need care and/or attention. For the most part those of us inside the "Autism Community" do have one thing in common that is the opinion that anyone on the ":outside " needs to walk a mile in my Moccasins before they can say they know what to do or how to handle something----That may sound rude or egotistical -- It has nothing to do with that; it is such a unique experience that it is almost indescribable. You find yourself in situations you could never imagine in your most creative mindset! And after you have been at it a while you become maybe even a bit "cocky" about what you think you know or how to handle most ANY situation!
HA!
What I can say is that these kids do have their ways of telling you  BUT more than sometimes you miss the Que!Even with the challenge of kids like these you can become complacent-- I prefer to say that you get into a groove and get used to a "Staus Quo" and miss it -- what they are trying to tell you and when you finally realize that you MISSED IT  man, you feel stupid first and then inadequate. you think to yourself -- How the Hell did I miss that? or Why didn't I notice ?

There are several examples but I will pare it down to a few just to give you something to ruminate on----
The specific incidence that caused me to post was just last week--- Dakota had come home from a regular outing and he is usually very satisfied IT IS VERY RARE to see behavior during this time  but it happened so I chocked it off to just a bad day and went on --The next day again a routine situation things are usually smooth and another little pissing match-- I chocked it off to autism and went on with the day-- I kept asking whats different what has changed why is he irritated  I could not come up with an answer. Later on that evening I notice hes putting his finger in his mouth - so I take a look and there it is  a canker sore on his gum--- I know it seems minor and how can that equate behavior BUT that's what I getting at -- THESE KIDS HAVE A WAY OF TELLING YOU! sometimes its just not the traditional way.
Many have asked me if I think something that minor could dictate behavior and I believe the answer is YES -- I think that when they act up in a classroom perhaps a new classroom -- somethings going on--- Don't know what it is and it may be different for each kid BUT I believe theres an answer somewhere . I believe the same for something like Dakota had going on with the sore in his mouth-- the behavior was the only way to get my attention Finally it worked---

Its almost like being a psychic or a "dog whisperer" you have to be in time with so much than the normal . It doesn't make us better or more proficient as parents and caregivers it just becomes a part of our job description on order to be effective with our children. they have a way to tell us we just need to learn how to decypher it!   

On a Positive Note

Sometimes when you post on a blog and especially when you talk about living with something like Autism {which it is NOT exclusive to that diagnosis}it is difficult to find positive things to write about---
Its always about the strife of dealing with either an agency or and individual or the "system" much less the demons that your child fights every day!

But today and for the past few weeks I have had a few moments where I felt good, saw progress and can even say was hopeful.

Specifically with Autism you hear over and over about early intervention and how important it is to get these kids started because with Autism there is a huge amount of "fodder" about them loosing skills or never attaining skills if you don't hit them hard early on. Also the other lament you hear quite frequently is that from puberty on there has been lots of documentation about our kids loosing or reversing much of their progress. So as those young adult years approach I think most of us watch with a keen eye to identify any losses and do whatever we can to halt it--

I can honestly say that pretty much every night I pray for miracles --If not miracles then even baby steps that continue to show improvement and/or growth. So far; knock on wood Dakota has continued to grow and improve on many levels--Look its no miracle but its improvement--AND it does render peace in my heart to know he is continuing to work his brain and learn things that others take for granted.

 To highlight the most recent "baby steps"
He used the word  MONOTONOUS correctly in a sentence----

He was watching a news feed where a lady was standing in front of a school reporting a story and a partial view of the school mascot was on the wall behind her and he said "look Mom there's a Jaguar"
He picked up on the word Philanthropy and he started to pronounce it a couple of times and then said "whats philanthropy?" I about fell out of my chair-- so I spelled  and I gave him a rough definition and he listened intently and acknowledged me--

now whether he has any use for any of these things I don't know BUT  the simple fact that he continues to pull these things out of his head tells me he is still growing and learning and that gives me HOPE!

You Can't Put a Cast on His Head!

I think the title says it all--- over the course of this journey thoughts fill my head probably on an hourly basis-- getting to the computer and posting them is another battle in and of itself. This is one of those thoughts I have  had probably a hundred times; just never got the time to write about it.

Years ago, Dakota broke his leg and we struggled with all the ramifications about it including it happening at school and he didn't want to go back , the fear that he would break his other leg , the scars from the surgery,the ambulance and hospital  etc. etc. Ultimatley the end result was that his leg would mend and he would be 'ALMOST" AS GOOD AS NEW. That being said the end result was less than perfect but it served the purpose a leg was designed to do on the human body.

The leg was pretty much a mess; a compound fracture which required surgery and rods and pins and a CAST. When a person who has a cast on goes out in public it evokes mostly positive empathetic / compassionate responses--people see it and they respond by either sharing their own experience or with well wishes for their temporary disability -----------
When a person walks out in public with an intellectual or developmental disability----It is a different story--the looks, the jeers, the judgement the lack of acceptance.
Personally I don't get the difference but its probably  because I live in a world where Autism is present every minute of every day. I see it being no different than a broken leg in one way--neither malady was intended.

When some one suffers a mental disorder most the world has a hard time accepting it; treating it the same way as a broken leg-- Look I CANNOT PUT A CAST ON HIS HEAD! Mental,Intellectual or Developmental disabilities are viewed as taboo. People are scared of them and in many cultures it is an embarrassment or often considered a curse--Those people who suffer with those types of disorders are kept behind closed doors, institutionalized or worse even abandoned or killed.
We cannot ask a doctor to drill into the brain and fix it--true it is an area we don't how to handle or what to do. Fhere has been 100's of years of study about mental disorders but it remains in my opinion the most difficult to diagnose and certainly the one most illusive to fix or even repair. Short of therapy {for those who can participate} and DRUGS  we cannot go in an transplant a brain , we cant remove the affected area {like slicing off a part of a liver and letting it regenerate } and most of all we CANNOT PUT A CAST ON THE "broken part of the brain".

It will be light years and most certainly long after Dak and I  have left this existence before there will be any solutions to things I have written about; I can only hope that my continued griping about awareness and acceptance will filter thru to at least a few. To plant the seed that Autism and many other mental disorders are not the fault of the person and that they are like any other human living on this earth.  All they want is to be loved and accepted as a part of the patchwork in any Family and/or community.  

Stop and think before you make a judgement -- remember you have your own "warts" and maybe the person you are making an opinion on, needs a CAST OF THEIR HEAD!  

My Heart Hurt Yesterday

Saturdays in general have been challenging for the past several years BUT  yesterday hurt. It wasn't that it was so much more intense than other Saturdays I think it was more the realization of helplessness I felt when I cant make his "hurting" go away.

Saturday's are transitional days for Dak --- because of his heavy reliance on schedules and routines especially with television along with other factors, He often times has behavioral issues. Sometimes it is sadness. Other times it can escalate all the way to physical aggression. As I have described many times before it is like the static in his head overwhelms his ability to think out his choices or options which in turn, CAN change him into a raving maniac{AND I say that with the greatest LOVE} It is as if he cannot calm the fire storm in his head so his body rebels. He can growl and shout. He can grab or even try to hit himself, on occasion he will try to grab my arm/hand and try to slap or hit himself. I have no fear because his intent is to rid the noise in his head and the simple fact that his motor skill level is not that of a trained fighter --its not like he can land a punch its more about the flailing of the body. I have said many times I probably could hurt him more than he could hurt me and I approach all inter action with that acute awareness. I must admit being a "typical thinker" it is extremely  difficult not to react to someone who is in a "physical mode" BUT he is my baby and I could never ...Well I just cant even think about it-- I can only say that no matter who it is; when someone attempts to come at you even with the purest motives or the knowledge that they have a mental impairement you have to have the mental fortitude to quash the innermost feelings of survival AND NOT RETALIATE. In Fact it has been my experience and has been what yields the best result most of the time is to walk away. Leave the room , allow whatever is happening to just "let the air out of the balloon" . I know many of you may not have that option because you need to monitor self injurious behavior BUT when its possible its worth a try-- {If they are in a safe environment}
When I feel Dak needs someones presence during these episodes I will simply sit on the edge of the bed or in the room and just not say anything--just be there and try to express in my eyes and body language that I am there and I will be there even as mad as he is...........

Yesterday was really no different than many other "Saturday Blow outs" what was different was my epiphamy that came later in the day--Dak was more sorrowful than usual yesterday and he even changed many of the things he usually "requires be accomplished  even on a Saturday " {which has happened before} BUT he was really displaying emotion the crying had purpose it was not just a product of the ranting, he seemed to be trying to tell me something and he even layed down and fell asleep requiring me to be right by his side . Even tho he was asleep and I mean deep breathing the minute I moved he stirred-- "Mommy where ya goin?" He needed me and I knew that the only thing I could do was just cave into the need.The rest of the day could go to hell -- My kid needed me and he needed me to set aside what ever the rest of the day had planned . I have no reservations about that -- because you see he did not ask to be born and he certainly did not ask to be born with Autism or any other kind of disorder so the least I can do for him is be the best Mom I know how . To hell with the rest of the world.

OK so here's the crux of the title-- My Heart Hurt Yesterday, after the whole thing was over and things resumed to what we call "normal" in our home these thoughts flowed over me like a soft waterfall. I FEEL that PERHAPS the Saturday thing is more about separation; not a break in routine--- and I may be totally wrong but that's what came to me last night. Dak often does something with his Dad on Saturday and although I know he looks forward to that activity I wonder if he is experiencing a fear not a change. In retrospect the saddness was deeply emotional and it was fearful . Although he can express himself his words are limited to HIS dialogue{ he talks about what he wants to talk about}  . When I attempted to ask him what was bothering him or why he was so sorrowful he retreated into his "communication shell" . I guess what this whole article is about was how emotional it made me because I could not resolve his sorrow.
I always want him to feel safe with me and to know I will always protect him as fiercely as a Mother bear.  My heart hurt yesterday because my son could not tell me what made him so sad. I will go on observing and assessing to do the best job I can with the hope that someday he will break from his shell and tell me how I can make LIFE better for him.

Daks Open Door on Facebook

I have now developed a page on Facebook under the same name
Daks Open Door-- this is just to try to spread more awareness and find more people who can help me as much as I want to help others -- In the future I will be X"cross" posting some of my little thoughts--Please feel free to add any input you have--

The first 6 or 7 weeks of 2012 have been lets say a challenge! One thing that keeps going around in my head is that those of you who do visit this page will always want support, praise and acknowledgement. I know If you live with Autism your life is not simple--- There is no formula! The one thing that has always remained true to me is "Go with Your Gut". Disreguard other peoples judgement on your life and your families life and do what is right for you. No One; even others who live with Autism do not know the particulars of your day to day lliving. It is imparative that you find the joy and freedom of what is comfortable for you, your child and the rest of your family!

OCD---

Lots of people have different ideas about what OCD is-- Obsessive Compulsive Disorder--
In My Humble Opinion I believe this is quite common because it manifests in individuals in different ways-- Many have repetitive behaviors others are "hard wired" to a routine or schedule- - - -  I got the chance one time to have a thoughtful conversation with and otherwise "typical" person who was diagnosed with OCD--   
We had been discussing a little boy who was absolutely insistent about going down a slide 3 TIMES in the park where his brother played soccer EVERY TIME. Rain or snow noon or midnight this kid would not get in the van unless he was allowed to slide--The parents were having a big problem with it mainly because they did not understand the behavior but also because there was concern over health and well being by factors like temperature or appropriate lighting etc...  the person I was talking to was almost shocked at the parents behavior because she totally understood the actions of this little boy . She described  like this; In this little ones head it is the same as a superstition. for this boy if he did not slide down the slide 3 times something bad would happen to him or his family. She was so matter a fat about it and explained that barring "self injurious" behavior  it was bordering on cruel for the parents not to indulge him.

I understand the need to guide your children and make decisions and choices for their well being and sometimes  to try to shift away from this type of behavior. Our kids need to "melt" into the existing world where most people have little or no tolerance for anyone who is "different"  however everyone of us is unique . There comes a point to make a decision whether we will just let this OCD prevail or try to quash it.

My personal opinion is if it is a benign behavior like sliding down a slide 3 times -0- whats the problem -- if it is invasive of other peoples space or it can be harmful then you need to re-assess. There are medications and as well as therapies that can help and sometimes the behavior will run its course --For our situation I have found that if I indulge Dak his one "obsession" at the onset of the day that the rest of the day is much easier-and sometimes I can him to do things he wouldn't ordinarily do -- Its a great pay off !   

Not A New Years Resolution!!!!!

Over the course of the first weeks of this year I have had a couple of "discussions" via email with Moms who have had specific issues which I believe should be posted here. I am quite sure if you go back among the already existing  posts you may find similar subjects but I am convinced that these subjects bare repeating...... 

Both of these are subjects that I would not consider to be "resolutions" but more a promise to yourself to not get sucked up into other peoples opinions and observations about your child and his good or negative behavior.

The first is IEP's and the IEP team and the way you pour your heart into these events and come out drained , emotional and for the most part feeling defeated-- If I could advise any parent only one thing it would be this;

I went thru so many years of IEP's and I swear it took more of a toll on me than caring for my son--One thing that kept me going was I knew I was his voice and whether they liked it or not . I was a part of the IEP team and my input weighed as heavily if not more heavily than all the others combined--


Stand up for all you believe in and do not give in--BUT remember that its only a small part of your childs  life.

Come 22 and he exits there is still a lot of living left . The transition services--SUCK There is nothing out there right now-----These kids have a typical life expectancy and they will be in the community far longer than the time that they spend in school
I guess what I am saying is "perspective' Don't let those school numb heads get to you I am sorry for all the tears and stress I put myself thru only to realize that all I fought for was gone once school was no longer a part of his life.

If I had the opportunity to give additional information  on my experience 
It would be this

We have to remember that these kids disability is their behavior  When someone, anyone who is a part of the team that is involved with your child  reacts in a way that does not " sit right " with you -- DO NOT  dismiss it as you being to sensitive  "GO WITH YOUR GUT"      If your child develops behavior in a new setting don't always blame the Autism --look at the people and environment SOMETHING has changed--I certainly am not saying that a person or persons are bad or mistreating what I am saying is there is potential for a "mis-match"  Not every person can get along or like every other person and sometimes that can make all the difference in a therapy or a program or a class. Do not be apprehensive to change the sooner you do it the sooner you will get {hopefully} more positive behavior and results not to mention your child will more at ease...   

So for now these are things that I want to leave you with--I am not a resolution type of a girl but I think realizing all the mistakes I made over the years -- Trying to give small purview to my experience may help someone else> For Now no resolutions just promises ---to yourself to keep a keen eye and a peaceful frame of mind when you are helping your Autistic Individual.  
 

New Year 2012

Happy Year to everyone who passes through my "thoughts"  Of course the new year comes with another plan to be more fastidious about posting more often! It seems as though I have many thoughts, opinions or observations that I want to write about the struggle always seems to be finding the time to sit down to post. There is always a conscientious effort to blog when it doesn't take away from Dakotas time however  I do loose some of my thoughts when I put them off --I guess just another sign of old age creeping up on me!

Last year was rather inert-- although I did manage to get Dakota Community Integration thru a Fair Hearing with IRC and an Administrative Hearing Judge. When the AB trailer 9 went into affect funding was cut drastically and community integration went down in flames for most clients-- however there are "exceptions" that allow the Regional Centers to fund this program but unfortunately it does not come easily.  So that was one of the highlights of the year. We were able to attend a few television tapings including American Idol and Americas Got Talent and then went thru the regular  events of the year -- only to top off the last week of the year but volunteering to help decorate the Rose Parade Floats.

One message I cannot repeat enough is the importance of getting your " Specially Challenged Individuals out in the typical community as much as humanly possible. I truly believe that although these kids need the safe haven of spending some of their time and days with kids that have challenges by the same token they absolutely need the typical Community experience ON A REGULAR BASIS. Not only is it good give them the exposure and ability to view and model from typical individuals BUT we need to expose the community to Autism and desensitize them from shunning or kids and disabilities in general. 

We have become such a judgemental society -- no matter what you see, most make a decision almost immediately what their opinion is of either a person or a situation. We need to educate people that it is not necessarily the first impression that dictates what is to be.   The ability to be compassionate , empathetic and accepting is slowly disappearing from our society-- We need to promote bringing it back. So many live with the opinion that they have to have what the next guy has, either clothes cars, homes, possessions, personality etc. If someone is walking down the Mall and they don't have the coolest clothes or phone or whatever the immediate reaction is they are a dork or don't deserve to be there--we need to stop it  and stop now-- The next time you find yourself drawing a conclusion --please just stop and think for a minute and put yourself in that persons place before you draw judgement--

This challenge is for our kids of course but it is for society in general it is a mantra we should embrace for the New Year and the all the years to follow. We can make this a better place and it starts with people opening their mind to possibilities.