Disney "The Tragic Kingdom" or " The Crappiest Place on Earth"

I have been meaning to post about Disneyland or should I say Disney "INC?" And how they have taken a huge step backwards in providing "magic" for ALL of their guests. I will give it to you Disney proceeds as if they are the end all, be all of entertainment providing "undeniable" top shelf entertainment for families...all along harboring one of the worst quietly enacted segregationist policies on the face of the planet...

For as long as I can remember Disneyland provided a Guest Assistance Pass for  disabled individuals  that was BAR NONE the best across the industry. Many of us frankly quit going to many other amusement parks simply because of Disneys Policies of inclusion and accommodation....contrary to what many believe was a cut the line ...go,immediately to the front privilege..it was in reality an alternate entrance holding area (for most) and blending you into the line type of service ..I will admit it was in some cases a bit faster than the typical ques or a fast pass but it simply was not jump to the front of the line as many perceive it to be,as well as many in the media report it to be...

On October 9 Disney changed this pass for a new Disability Assistance card??Which is problematic to say the least ?? The  new process is a nightmare and IMHO discriminatory. What was once a privilege and probably the one thing that most parents of kids like Dakota were thankful for, has become the elephant in the room.What I think, is perhaps Disney was trying to achieve .... is to curtail the attendance of people with disabilities instead of doing what their PR department claims : which is to address those who were abusing or cheating ! 

Disney received bad press around March,about idiots who were hiring disabled
individuals to go to Disneyland simply to obtain faster access to rides by using the Guest Assistance pass  ..... The knee jerk reaction of the "big wigs " in the Disney Corporate offices was to fix it and fix it fast....OH THEY DID THAT ALRIGHT! 

The new Disability Assistance card it mired with flaws , and simply not well thought out  or tested. Disney is claims they consulted certain organizations that should be helpful for making this a positive experience, but the fact is the organizations do not have a clue as to the mechanics of navigating Disneyland with a disabled individual.

The new procedure requires you to go thru a check I process at City hall which is about 
twice as long as it used to be??that I can live with  BUT; Then the fun begins..they have  placed 3 kiosks in the park where you are required to "reserve a time, for ONE RIDE AT  
A TIME...you cannot get a time for the next ride until you have had the previous ride crossed  off. What this means is you don't even have the luxury or flexibility of a fast pass where you can go thru the park and accumulate different times to ride numerous rides. AS if there isn't enough walking around just to get through the park you must make numerous trips back to the kiosks simply to have the privilege of utilizing handicap access... Essentially what this means is the people and parents and families who need these accommodations must lug there children Back and forth to 1 of 3 kiosks for EACH RIDE...That may not sound like much to many but if you envision these families who have kids who are on oxygen (with portable tanks),feeding tubes, wheelchairs and specialized strollers with all kinds of equipment and medically necessary stuff , back packs full of medicine or specialized food , suctions or other instruments ....only too get a response from a cast member that YOU MUST WAIT FOR YOUR APPOINTED REPORT  TIME, ride the ride , then have to walk back to a kiosk only get a new time for another ride which can't  boarded for another hour SO you can have your family watch a parade or go get something to eat  in the meantime...perhaps this sounds OK to those who don't have children on the spectrum or kid with other disabilities as well but those of us who live with this every day know this is just an abomination...Disney has ruined what was one of the brightest lights for our kids...

Finally the saddest part of this story is there have been a couple of organizations who have tried repeatedly to contact Disney to try to get them to listen but they have been silent in response ....40,000 signatures were collected and presented after 3 weeks of calls to the Corporate office and still no progress or even a hint of consideration ...

Look I don't want this to come off as someone who feel entitled or is just bitching what I want is to continue to educate and inform people including those who don't livewithin-the  parameters of "my world" to an In Justice that really can affect everyone ....this is it... If you have any inclination to speak out:  Mark Jones director of Services for  Guests with Disbailities   And  Betty Appleton Risk management at Corporate head quarters  on Buena Vista  Street.  Burbank are the ones who should be contacted ??Also Thomas O Staggs is  Director of Disney Resorts and Parks..and the biggest Kahuna of the all is Robert Iger CEO of Disney corp...all at the 500 s. Buena Vista a Street, Burbank California.  

I have written a coupls of letter San emails as well as many others and it hasn't made a different yet but I hope to continue this cause ..keep it in the fore front and hopefully help change this process that is so devastingto our kids...

Idea for possible contact with local police

There have bee a couple "brushes with the law"over the course of the past few years and finally I concocted a plan that I HOPE will help if and when there's another interaction with the local police....

Several years ago perhaps 3 or so I had taken Grandma  to a lab for a blood draw , to a place we had all gone many times before...of course this particular time was Leiden with changes ..more crowded, different time than normal, AND the lab had just been "rearranged" ..chairs I a different pattern.  Things on the walls different or missing, I think new paint and new carpet...so we walk in everything's ok for the first 10 minutes then Dakota starts to pick at grandma and the more she reacts the more he escalated...then there was an old man (sorry I am old too ) but he was with his wife who was noticeably ill perhaps cancer ..think she had a snood on and I could tell he was not happy with Dakota . I did what I could but quickly realized I had to get him out of there most especially because this guy was growing increasingly agitated as well...I was afraid he might try to grab Dak and then it would be a real mess....we got outside and before I could get him into the car he started yelling and pushing me and had decided he was not going to get into the car???finally I manhandled him into the car and left the parking lot ..I got no furtherhan the main intersection and what to wondering eyes should appear ????not sant but a motorcycle cop who threw the lights on and I pulled onto the nearest parking lot ..so if Dakota would flee at least he wasn't on the street....the policeman was very nice and he just wanted to know if everything was ok  that they had got a call about the ruckus ....I explained the situation and he said no problem, he looked at Dakota and said a few words and left....

Flash to about a year and half ago Dak was visiting his dad overnight and his dad was making plans to go out to dinner with people Dakota didn't know and he decided he wasn't having any of it and ran out of the house and threw himself on the front lawn screaming and yelling..Well guess the neighbors weren't having any of it so they called the police....when they showed up they separated the. And "attempted" to talk to Dakota ???they also quickly knew this was above their "pay grade" and left...

My head starts grinding the motor to figure out what I can do ...there are so many 
instances of police not taking a disability into consideration and the lack of information readily available to them when they arrive at a "scene".....so I took to the computer and wrote a brief 2 page discriptor about Dakota,his behaviors,his abilities and what to expect when encountering him I put a current picture and a copy of his State I.D. ; made several copies and took them to the police departments in both cities that his dad and I live in...asked for the communications director and explained  what had happened and that I am trying to be proactive in the case of another incident ???I also took a few to some neighboring cities as well like where the mall is that he goes with a coach and city where a movie theateris that he goes to ...everywhere I went the info was well received and I hope that it didn't go into the trash and was filed like they said they would...look this isn't perfect but at least it is a step ...a step to at least say I tried to give you so maybe there won't be someone who doesn't know what they are encountering...it just an idea and there are probably 100's of ways ..this is just what I did...maybe it can give you ideas of what might work for you and yours!

Not sure what you would call it!

I don't write about this very much mostly because it is often misunderstood or misinterpreted...although I know that anyone who lives with this disorder experiences the same thing..
Not sure what you would call it ; but it is an accumulation of overwhelming feelings, emotions, loss of control, depression, frustration, glimmers of hope fading to desperation and any other descriptor that enters your mind when you have just had about all you think you can tolerate...

The good thing is it doesn't last forever it is merely a phase that comes and goes as the autism infiltrates you life and lives around you...you have as many glorious, indescribable,happy moments too...

It truly is a roller coaster and I am sure this is not the only disorder or disability that has this effect on the people who live through it.

The big differences I have observed is how the most minute accomplishment can send chills through your bones like no one can understand ....for instance when our kids finally say a word or learn to tie their shoes and are 8 or 10 or 20  and a typical kid it's no big deal...but when our kid throws themselves down on the floor in the store it is different than if he was a typical kid and it affects us differently...there's an embarrassment or need to explain AND "a good spanking "or "timeout"not a viable option in our world!!!

I don't know if this post will help anyone. What I will say is that sometimes just writing about it helps me release the torrid thoughts  and frustration that overwhelms me! I know those who just visit and read one or two excerpts probably won't get much from this ; hopefully someone who is struggling like me right now will read and feel like they have found someone who understands ....whatever you want to call this!

September Shot to hell....

I must apologize again ..September just got away with me...it is however Dakotas birthday and we had a wonderful time spending the better part of 6 days at the Disneyland Hotel and the resort...we actually spent much more time in the parks this time ...about 5 days befor we left for our adventure Dakota ended up at the doctors because his foot was bothering him. We took X-rays and he stayed off of it and a little bit of miracle and magic and he was ok to go.
There's several things brewing ....the revision of the guest assistance passes at Disneyland
 which I have a very strong opinion about the stuff happening around the house,and the holidays coming ,,,, so I will be back posting  very soon

Till then my posting for September is water under the bridge or went to hell!!,

March on Washington......Continued

I apologize but for some reason the blog is not allowing me to edit or finish up  my previous post March on Washington ....so I will close with this...some of the same raw human emotions, feelings and opinions continue to prevail ..Perhaps we will never get to a place of "A Perfect World" ...
Those of us who travel down this road have one constant plea...Just let our kids be a part of the community, embrace them the way they are ,include them when you can and tolerate their differences because they cannot change it any more than anyone of us can change the color of our skin!...
That March on Washington was for all of us and for many reasons I thank Martin Luther KingJr. and the thousands of people who descended on Washington those many years ago for at least starting the process that we have yet to complete!

The March on Washington DC - 50 years

Perhaps you might wonder why this topic is related ...I express my observation!

In honor of the the March on Washington and the effects, intensions and accomplishments that day meant to so many I express my sincere appreciation to those who not only showed up and demonstrated but for those who had the ability to listen, observe and do something about this cause....

It was 1963 and I was barely old enough to truly understand why this march happened and what it actually meant. I lived in a place where segregation was not prevalent and our neighborhoods as well as community was liberally integrated. My parents , neighbors and people whom I came in contact with didnt display the hatred and jaded opinion towards someone who might not be or look exactly like them....I don't pretend my world was perfect but for a kid going to school and living where I did,  I never thought any of the other kids were really any different from me ..perhaps one might have ethnic food aromas coming for their house , or someone's mother required them to take their shoes off before entering the house or another was required to go to church EVERY SUNDAY no exceptions and had to sing gospel music in the church choir .. It wasn't because they were Afro American or Asian or even Hispanic ...it was just because that was they way they lived!

OK so my first real experience with segregation and discrimination was Junior High when they started the bussing programs with kids being brought from the other side of the city for mandated integration...quite honestly I believe that most of us kids were totally OK with it and didnt even realize that these kids didn't live in our neighborhoods. It was the adults who were having the struggles.We made friends and still dealt with the angst of puberty and just getting by...Oh make no mistake we had our share of incidences and there were kids not happy but again I have to say I do 
not ever remember it being a big deal ..

As we all grow and learn , we develop our own opinion  and perception and again I dealt with my 
own "discrimination" as I was the chubby girl...that never bothered me either..(I thank God  that I was lucky to have the type of personality that allowed be to be well adjusted)  What I will say is one incident in High school was empowering and probably the one and I only time I felt in the crux of "racial unrest" . Ironically  I was in the quad with my "sister" holding her hand and protesting with the predominantly black population of the school because we had a homecoming  game and they were not going to allow one of our star  players,who just happened to be Afro American ,play  because he did poorly on a test...Well befor it was over the school was I lockdown and the Army   National. Guard was called in... 

Now with all that back ground I will bring it full circle to my most current experience and why this March is and was so important but how we still have so far to go...

In dealing with a child who has autism and for the most part is classified as Special Education, there 
a fine line that has to be walked in order to get what your child needs but accommodate many who 
don't necessarily have the propensity to tolerate or accept any human being  who is not "typical or normal" ..this is with the school districts and the community of "school" ...Yes there is a large population of people teachers and professionals that are on board and have the right spirit in their hearts to give our kids the most typical experience possible yet throughout our years I saw infraction after infraction and situation after situation where I would proclaim "what is this????are we back in the 60's"

Time after time I can tell you that walked my child to EVERY SCHOOL HE ATTENDED to a segregated area of the school,usually in the back ( like the back of the bus)....in area  where NO TYPICAL CLASSROOMS were,normally surrounded by fencing and almost always "portables" ....their lunchtimes were most always different than the typical kids  and often time they didnt even eat in the same place as the other kids ( God forbid that you request that your kid might take lunch out in the quad with the others)...they often times had different PE and here's the kicker they loaded the 
buses in a different area of the school and they were excused up to an hour before reg school got out 

yet required to be up sometimes as early as 5:30 in the morning get there for school by 7:30 because of the arduous bus schedule....
I guess what I am getting at these kids didnt have anything to do with the March that occurred 50 years a

Small Victories....Overwhelming Emotions!

This is probably a topic that anyone who lives with Autism can attest too.....When our children are infants even toddlers you find yourself watching all the little makers ANY PARENT does... "Did he raise his head by 6 weeks?" "Did he sit up by 6 Months?" "Did he take is first steps by a year?" Many times in our "world" these don't happen on time,most especially the words and communication that's usually comes by 2 years....

We find ourselves struggling for answers , dreading the outcome  AND making excuses why our child is "behind" all the while, secretly crying inside knowing that this is just another "marker" of Autism.

As we grow into the diagnosis we learn to work with what happens and there are many strides our kids make..the closer to age appropriate ,we get a Lil spark of happiness and hope that perhaps this thing called Autism hasn't completely swallowed our kid up . When they are small it is much easier to camouflage many of their delays because as we all know every child develops on their own schedule and our children can fit in a little easier ...In my opinion about the time elementary school starts is when those opportunities start becoming more challenging....When they are not potty trained or talking by 1st  grade it is much more tricky to overlook the deficits and those around our children are acutely aware as well. By the time Middle School and High school roll around many of our kids are just LOST in many ways....Don't get me wrong the more typical experiences and typical age appropriate kids the better,they are like sponges and they will mimmick. We all need to keep in mind they are still Autistic and they still don't always interpret what they see and hear the way others do. HOWEVER when they do decipher an appropriate behavior or response  I can guarantee you can shoot us to the moon....it is the most overwhelming joyous feeling .It may not be long lived and it may not remain with our children as a forever learned behavior but for that one moment in time our child was a hero!!!To know that in some special way for that one special moment we saw our kids relieved of the torment and craziness that goes thru their heads thousands of times a day , the stars aligned , the Neuro paths were clear and firing correctly and they were able to handle a situation or even more prominent a behavior in a way like never before.

I cannot express in words on this page what that feels like ....the emotions are huge .I know this sounds perhaps a bit dramatic or over played especially for parent that do not have kids on the spectrum ....I know my description is accurate .I read it every day on blogs and Facebook pages how someone child went into a restaurant for the first times and didnt have a meltdown ,or went thru the night dry no accidents, or even mumbled a sound that remotely sounded like a word ...This is how we lives our lives folks....

You can shout from the rooftops about typical kids doing typical things and I applaud your blessings. When our child accomplishes the smallest hurdle we rejoice like he climbed Mount Everest .

I am not saying that we are anymore special ,all I am saying is what most go thru on an average day with average expectations of their child  is like winning the lottery for us....Small Victories yield Huge  Emotions!

Footnote: source of this article was an accomplishment late last week when Dak and I went to his routine place to pick up dinner and there was a 45 minute delay due to baked potatoes not being ready.The minute I found this out I,YES I started freaking out cuz I knew this was the type of thing that could potently trigger behavior...I looked at him and told him the food was not ready and we had to come back . Without hesitation he said Ok Mommy walked right back to the car asolutely No Problem No behavior..OH MY GOD...the second part was returning to finally pick up dinner and again NOTHING..."wait am I on an alternate universe???whats happening ??? Why am. Having a normal outcome??? Is someone trying to trick me?"  After all of that we get in the car and drive home with the food , dish it up and STILL HAVE A DAY without incident! THAT'S ALL I can ask for!WHOPEEEEEEE.     YEHAAAAAAA.  HALLELUJAH   BREAK OUT THE CHAMPAGNE!
See what did I tell you  ..small victories ; huge emotions! What a great day!

 

Cross post with Facebook Page

Well I posted somethin on Facebook so I thought it was a good article for my blog:Things have been relatively good ....I take the behavior as a part of our lives and you cannot just wish it away.Many are convinced that therapies and diets can "cure" Autism ..I don't agree. It's more like diabetes as long as you get the proper insulin you can live with it,the same for all the "so called cures"for autism.....Keep them going and you might see an improved life but the minute you discontinue our kids are STILL AUTISTIC and will go to their graves AUTISTIC....... An observation I have slowly begun to realize is that specifically in Dakotas case I feel , considering the onset , trigger and duration of his behaviors. Especially in recent times ,it seems  to indicate something like a seizure....the "triggers" are very diffcult to recognize and sometimes there is very little to point to as a trigger. The onset is almost instaneous literally one minute happy good behavior to raving maniac hitting and shouting. The duration is usually quite brief in terms of what I have compared to others on the spectrum. AND many times after it "passes" , he will be meek and apologetic as if he had no ability control his outburst...perhaps This is more indicative of Bi-polar or some other DX . When our children get older it becomes more and more apparent that they like many other "populations" are "throw aways" ...the doctors stop giving you therapies or alternatives , they are usually physiologically healthy so there's nothing to be done about that,there is no support after 22 from school or educational institutions ..all that is left is to put them in a work program where they are behind closed doors doing busy work (for the most part) and it becomes a glorifies babysitting service....VERY FRUSTRATING! I believe many of these kids CAN STILL BENEFIT From therapy and programs ..there is just nothing out there...I don't mean to slam the work programs because they do perform a valuable service to thousands of challenged kids who are very happy to go every day BUT It is the only alternative and that's what is not right...OH I digress....one last thought there are even more kids coming up in to the general population getting out of school and if something is not done there won't be anything out there for them ..!..PEOPLE UNIT AND STAND UP NOW BEFORE its your son or daughter out there floating with no where to go....they will only spend the better part of 12 to 18 years in Pre school and school at the maximum age of 22 they must exit school programs then until they reach old age unless they are fortunate to be Aspies and can get a decent job they will be in thE community with. N O T H I N G and NO WHERE TO GO!!!!

What right ? What's Typical?

I rejoice Everytime I see Dakota make a small step of progress whether its conversational or concept and I thank my lucky stars that he is as functional as he is!!!Many especially those in the Autism  world label him as high functioning and for those of us who live this disorder  we know that labels are more for the parents than they are for the kids. As I  discover more people with Autism who can express themselves one of the things that seems to ring true is that they look at autism being a part of who they are not something to fix.
I have found myself repeatedly asking if what I want for Dakota is what he wants for himself....you know the jargain about being typical and wanting typical experiences...Is more because that's what I think he needs or is more about what I think society thinks he needs ....

Recently this has become more prevalent  in my mind as I see him becoming more and more reclusive and much less amicable towards participating every day activities that most young adults do...It hurts me to see him not want to bowl, or miniature golf, go to a movie or the mall...More so when I try to challenge him to do one of these things it becomes a trigger for escalation of behavior that is more than just a no ! It bothers me so severely that I find myself fighting tears trying not to let him know that it upsets me .He gets extremely vocal and screams at the top of his lungs  mostly to "SHUT UP" even when I am not speaking...

My heart breaks because I feel he is missing a significant part of life and love by not doing some of these activities...but should my heart break ??? should I just say I like this and he likes that and that the way it is and I need to leave well enough alone....

One thin I have learned is that you have to pick your battles and sometimes it's just not worth challenging him and than creating  confrontation....I don't have the answers  I wish someone could enlightened me but I don't think there is a right answer...or at least a correct answer..

For now I will have to muddle thru making a decision each time the situation comes to pass. Live with the frustration of not being able to push him to try and shed  a few tears in the process!

Comment on Brad Loula

Today I opened up the blog to post a few thoughts about thing Dakota and I have been going thru..mostly me..hahahaha and there was a comment on our Loss of Brad Loula...from a a friend of his in college Steve Oly...I was already in a state of emotion and his comment just sent me over the top...Steve if you continue to read this I hope you know how important your words were to us and how much we miss Brad now  as we did when he first left this earth! 

Much of what Brad struggled with was the loss of his friends and comrades from football and college. He was very much a loner and I still believe to this day he was one of the few people who really gets my son....I only wish that he would know that there are people out there who loved him and cared about him and it was circumstance that separated him from all of you....

he had a very tumultuous family life and it laid very hard on his head...and just befor he passed he was having great difficulty finding the right job and I think that ultimately contributed to why his body and mind finally just gave in...To anyone who wants to know any more about him please feel free to contact me thru this blog ...Thanks again Steve Oly

Follow up on Daks trip to the ER..

Well went to the doctors on Thursday with relative expectations ...everything is OK ?But am feeling a bit apprehensive and perhaps questioning the Professionals ability to shrug off what concerned me. I don't  mean to disrespect their years of schooling and experience  I am just one who feels that you have to go with your gut as stated on the top of my blog.

For the most part the trip to the ER produced NO worry or concern and all the tests were clear ,with the exception of one notation on the CT scan.."mild opalification of spehenoid sinus" Upon my own little investigation I find that this sinus shares space with the middle ear...AHHHH Ha my mind says as Dakota has been having trouble with his ears and I k ow that the ears and equilibrium or balance problems CAN BE RELATED....asked the doc for a referral to ENT and he didn't seem anxious to give me one...got a referral to Neuro tho so will pursue from that point...

I know there something  going on with Daks ears and what bugs me the most is that I can't prove it cuz he won't talk about it..I trudge on!

Visit to the ER again!

Well Friday brought another experience...Having the opportunity t check out the new hospital in our town!!!F U N !

For the second time in 18 months Dakota keeled over ...and could not tell me what was going on .....SO it's off to the ER .Usually by the time your kids are 6 or 7 they can at least express symptoms, when you are dealing with Autism...not so much. I know this is not exclusive to Autism but more common with these kids....Even in case , Dakota is verbal but not conversational so when you are trying to ascertain details or description  F O R G E T it! I have liken it to having an infant...you have to be perceptive to what you see, feel, hear and think .....

he got up from the table and started to walk down the hall and all of a sudden just bent over and rolled on to the floor .I don't think he passed out but have no idea why he lost his bearings. In this case there was no questioning my mind I had to take him to the ER . f he had been able to say oh I got dizzy or I tripped or My head was fuzzy I might have just laid him down and watched it pass . when you have something like that happen with no evidence of what's going on, you have no choice,you must investigate. I would never forgive myself if I didn't take him and something further had happened.

Perhaps this sounds reactionary , it only follows my own advice "Go with your Gut"

Double edged sword is this they didn't find anything..but they didnt find anything! I was glad the tests came out clean but then there's no explanation for what happened!I will press on and have follow up appointments, with the inclination that I will press for referrals for what I think is necessary. The only real positive out come was we got the "gamut" of tests done all in one afternoon that would be a nightmare to get done otherwise  and now we have a point of reference for the future.

So Stay tunes for further developments...

My Heart Stops when this happens

So I walk into the bedroom yesterday and I realize Dakota is crying ....full bore crying crocodile tears ...sniveling and snotting uncontrollably..MY HEART STOPS.....it is a double edged sword , I have joy that he can experience emotion but sadness because something is breaking his heart. I am quite sure EVERY PARENT probably feels this way ; I can't help my self because he cannot express WHAT IS MAKING HIM SAD....I have no ability to talk him through his feelings or to "FIX" what's has made him sad...   I don't know how others get through this....

This is just another "thing" that sets us apart from others...then the guessing starts , the asking starts only to get "I DON'T KNOW  GO AWAY " The biggest issue is its oxen up in his head and even thinkin about a psychologist is a wash ...it wont accomplish anything

Well the day has come and gone and I am still thinking about it and what I might be able to do.I can only hope that somehow "nature" will help him work through the feelings and allow him to understand that it's OK to cry and its ok to feel sad but not let it consume you...For now my heart stops everytime he cries.

Autism Boards Online

As Dakota has grown and now exited  or aged out of School  have found that many of the Autism Boards ( support groups) that are on line don't really line up with my perspective or needs BUT I stay connected and watch them on a once a week basis just to make sure there's nothing I am missing.

Caviot: on Yahoo under "Health" they have several groups that cater to specific diagnosis or  group of people with a common needs and questions...once you put Autism in the search it will pop up probably 100 different options.....you can pick and choose what suits your needs


Ok back to my post, every once in awhile a subject pops up that interests me ....recently there was a mom who was having trouble with trying to find appropriate placement and was considering a "non public" school setting....my response was  often the non public classrooms are more of a nightmare and even worse for our kids...perhaps the better option was to try to work in the district to find a better class and a better teacher . The bigger message from me was this our kids spend about 12 to 16 years in school only to leave with a certificate of Completion NOT A DIPLOMA yet most all of them will live out in the community for the better part of 60 years after school and there is nothing, NOTHING out there, no supports no laws nothing to help. You can spend your energy fighting the schools and the districts become exhausted ,listless ,2 steps forward  only to go 1and a half steps back  and when schools over all they do is wave bye bye ....

I guess my point and the purpose of the this post about the online groups is that there is all kinds of information and choices,wonderful success stories and horrible tragedies ..many of them can help .  Just think that they are like anything else where you have to keep perspective of what they can offer...there are some who judge accordion to whether you do and say the same as they do, there are others that you can write and ask questions and no one will ever respond .

Use it as a tool , but always be guided by your own intuition ...

It must be the TIME of the Year---Mothers Day

I am not quite sure why the emotions "crowd" up on me around this time...perhaps it's just coming out of a sleepy winter and lots of things are awakening including my feelings . One thing I know for sure is Mothers Day is next week , I am experiencing melancholy and a bit of loneliness.....not typical of my personality !  Also reviewed my posts on this subject and there are  4  excerpts out of  over 350    So  I know this is a redundant topic.

I must say I am a very independent woman and am not one to ask for help or assistance unless it is absolutely necessary, however I am an extremely emotional person ....Mothers Day just gets to me. I find it challenging to portray my thoughts because I do not want it to sound like an "oh poor me scenario"....It is not
What "it" is :  is my need to describe how different our (many mothers of children who are disabled) experience is so much different from the rest of the world  and although its not about pity or compassion or even empathy it's more about explaining a world that I don't believe most people even knows exists.. I know there has to be someone in every ones life that knows one of these Mothers, is friends with one of these mothers , works with one of these mothers or somehow has contact with one of these mothers....My point is that our kids love us yet will never be the one to surprise us with a Toaster Strudel and the morning newspaper in bed  or even one that has the ability to go any place and pick out a card yet they will be the same ones who reiterate and yammer for days if not weeks before that Mothers Day is coming....

Now no one can replace what a mother would want her child to do but this is more about any little kindness that could be passed on like trading a shift, or  a phone call just to see how they are, giving a coupon for money off a dinner or even a simple eye to eye greeting with a "hello how ya doin".

I really must say I think this is more about the masses out there but it's driven by my experience...this can translate throughout the year .....for me it's just The Time of the Year that makes me sit down and post! B T W  Happy Mothers Day to all Mothers cuz I know we all have our own dragons to slay and different situations...Make the best of the DAY!

Guilt...

The one thing I have said all along is that Dakota will always have memories and NO ONE can take that away from him...I have a tiny bit of guilt more often than I would like to admit that I could always do more for him.
I do my best but I have always been one to second guess my efforts.. In other words I am my worst critic,,,perhaps that's how all of us are it just seems to be magnified when it comes to a child that literally depends on you for  pretty much everything...
I look around and see many kids some challenged some not and I am always thinking I could do that or should I have done this???? Well so an so did this maybe I will too....On the flip side I also see so many kids that have parents that pretty much don't give a rip...So There is no easy answer...never have been one to follow , always been one to march to the beat of A different drummer  just want my boy to have the best life he can...
I truly believe that you cannot be happy with anyone else until you are happy with yourself AND you cannot compare yourself to anyone else ....It never stops the guilt from creeping in occasionally.

More importantly when my time comes to leave this earth I can only hope that Dakota is happy and filled with memories to last his lifetime AND that somewhere out there there is someone who will carry on taking care of my baby and give him a few more memories .

First Tidbit of the month...

So many times I have witnessed Dakota in a group of peers and his attempts to enter a conversation. Although  the others are caring and compassionate and want to Include him most times than not he gets lost in the shuffle . He will pickup a word or topic that goes floating thru and then make a statement usually unrelated to the general conversation but specific to a word which will either be ignored because no one took the time to realize what he's doing  or  they will wonder why he's talking about that particular word or subject when they have all just discussed it but have already moved on and forgotten ....A N Y W A Y....My point is ( as I have said before many times) it's all happening in that brain even if none of us can DECODE IT... On my Facebook page just today I came to this conclusion 
"Just cuz they DON'T ; doesn't mean they CAN'T!"

April is Autism Awareness Month

Funny how fast the days blend onto weeks and months ...I cannot believe its already time for Autism Awareness Month...Not that it is any different than another ..just gives many of us an excuse or reason to highlight what we know and how we can educate others on autism! Will try to be diligent on posting Lil thoughts most especially this month and imagine that it's already the 8 th...YIKES

Growth????

I have always told others who are in similar situations its a matter of the moment that you are in that dictates your perspective, actions, thoughts and emotions. I am quite sure that this true in the typical world for most people whether it is raising and rearing children or just people trying to muddle through life....However I do believe that when it comes to children it seems to be magnified simply because the added responsibility of how that "being",which is a part of you, projects and portrays him or her self to the world.  Add to that there comes a time when most , NOT ALL, are ready to leave the nest ..... There's always that wonder and worry " will they be able to make it.." " how will they handle this or that situation." "Do I rescue them if and when the time comes? "

With our kids  we ask our selves similar questions usually in a delayed state but overwhelmingly the questions from friends , family and even strangers is almost always " will they (our children) ever be able to be on their own?" "Will they grow out of this."   HONESTLY there is no pat answer and for the most part it is a wait and see stance we take with cautious optimism that our greatest fears will never come to fruition..That they will always need care ...

There are all kinds of things being done to "intercept" Autism mostly with what is called Early Intervention Programs which just like everything else has its positive points yet still bears no real solid stats to prove or disprove its effectiveness. Add  to that the wide  spectrum of Autism it's all just a guessing game..don't mean to be a Debby Downer ....every kid is a different "bag of tricks" and we have to search for what works in  each individual case.

Personal experience bears this out, I have seen and also know of numerous kids who have had "growth spurts" ( not of the physical kind ) at ages 7, 9, and 11. Once puberty hits the horizon not only is it pure hell on earth magnified 1000 times by Autism  BUT it is also time time where we sweat bullets because it is known for a time when many Autistics revert . Many books, studies and   parental observations have been written, how our kids lose a lot of what they have learned, can sometimes develop   other maladies like seizures or other disorders worst of all they start going backwards developmentally.

Luckily for Dak we haven't had this experience .Although he is much more intelligent than we can prove on paper and appears to be communicatively awkward there is so much more I. There than most anyone gives him a chance to display...THAT'S OK   Living with him 24/7  gives me a little broader view of what's going on in that head of his because it gives me opportunities to see the genial nuances of "lurks" in that brain of his...and certainly a way for me to ascertain his "growth spurts" .Once and autistic person hits puberty it's almost always considered an apex for learning and therapies...Try to get funding for programs or insist that you believe they can still benefit from interventions and you literally get laughed out the room . And try to tell someone at  his age that he is experiences another growth spurt they might as well put a Jesters Hat on me and tell me to entertain the king and his court!

What I will say is just that, and laugh all you will , question my ability to recognize this type of  progress, tell me I am crazy or imagining it or that because I am a mother just desperate to wish my son more progress that I am manufacturing it ....I DON'T GIVE A DAMN because I know what I see and what I hear....I am seeing another brain growth spurt...right now and for the passed several weeks. I will bore you with specific examples ..questioning bout words he has heard and wanting to know more about then ..when he never did before, reciting lines for a movie that he hasn't seen in 10 years , even more expressive language and his ability to speak an opinion or even say a sentence about wanting to do something where before it was more of a grunt or a physical reaction.

It's not rocket science and the fact still remains that he will need someone around most of the time for the rest of his life but it doesn't mean he should not be giving accolades when he is continuing to grow . Even more important is the message I am trying send to others which is Never Give Up and  Never Give Up Hope...Don't let others talk you down from your stance when you know what you have seen or heard. It does happen and it can make a difference for your child's life because eventually someone will have to listen to your barking ....If you see GROWTH ; talk about it,document it  and insist that whether some one listens or does anything about it THAT IT STILL EXISTS!

Hamster in a wheel

I posted the other day on Facebook that sometimes I feel like a Hamster in a wheel... I cannot seem to see the light at the end of the tunnel and that for the rest of my life everyday until I pass that I will be helping care for Dakota ...AND sometimes that exhausts my mind,.it frustrates me , and yes sometimes even pisses me off....Not as a resentment toward Dakota but just as an overwhelming thought of helplessness and in ability to have any control over the situation. By the grace of GOD I am not a controlling type of personality and that one thing has helped me thru.

When we have these children and eventually get a diagnosis one of the first questions we ask ourselves and then others will ask quite often is "will he be able to take care of himself" ...at what age should you start seeing these abilities... and day after day , month after month , year after year , as they go by you keep that lamp lit and keep hoping that things will develop .... Every tiny step is a blessing and you continue to hang on to hope that maybe just maybe  he will burst out in flames and he will do things like we never expected. Of course as the years go by you set your expectations aside and keep plugging away and continue to be Thankful for any progress [especially during puberty}

When the school finally exits your child having done a lot less than promised or expected and you have sat for hours on end reading, playing, teaching  and the 20's roll around you really start re assessing... Don't get me wrong I will never give up BUT you have to start re evaluating whats been done and what can be done.... also by this time the child is no longer child in most aspects yet hes not like a typical kid and cannot be treated that way ether.

The most prominent thing I have noticed is that he is more and more set in his ways and is much more resistant to change ..PERIOD.I don't think I could have done anything differently and I will continue to challenge him to try something new ;but I have come to a place where I evaluate the the purpose and the reward vs. the fight to put a new thing into action. At this point in time I always ask is it worth him acting out , getting upset, crying, yelling etc etc just to have him experience something that I think is good for him when he clearly doesn't have the interest or understanding???Again I will not give up but I make sure that if I am going to push his limitations It better have a profound benefit to HIM  and not me or anyone else. Why make his world any more stressful than it already is... Can you imagine living with a woodpecker tapping at your skull day in and day out and then someone asks you to stand near a chainsaw all day???

I guess the whole point of this post is to vent {a lot} and speak to others who live in the same situation to let them know they are not alone ... one of my friends on Facebook merely said its not that you cant see the light at the end of the tunnel  its just that the tunnel has a bend  and you are not around it yet....We all need help and we all need to know to ask for help . So many of us just don't .... 

My Observation about Mental Health and guns....

I am a professed die hard Liberal Democrat and do not make ant excuses oer explanations ...
That being set aside with all the chatter about gun control and the question of Mental Health being a component, as a parent/caregiver I feel that REGARDLESS of my political persuasion I have a few valid points to be talked about... about 75% of these horrendous mass shootings are white males from the early teens to their 30's.. Of those over 60% to 75% had a history of mental health issues... That is scary. What is even more scary is that in some ways we have an element of responsibility,,,WHY you ask??????

For 26 years I have dealt with professionals and medical personnel  working,observing, studying or diagnosing Dakota .... The first line of defense or discussion is MEDS... No one wants to work with these kids, spend real time with them , totally understand them and do what it takes to actually help or TRY to help most of these kids.
LET ME BE REALLY CLEAR  ... I don't not condone this behavior , I do not think all offenders are in the same category as individuals with disabilities, BUT I do believe that the majority of them have been lost in the system or "shuffled of to buffalo" when it came to doing anything of substance for them! 

Look, parents are not totally innocent and as the last horrific incident in Sandy Hook, Connecticut  has unraveled , we are finding out that this kids had problems recognized by his parents who did not address them properly BUT also a Mother who was an active gun enthusiast so it was the perfect storm for disaster to strike.... What I am saying is that parents every day talk to teachers, psychologist, doctors, therapist, social workers, administrators who routinely don't have any answers, don't want to cooperate with with the parents and what they want to do for their kids, Ignore the kids , the kids get lost among all the other kids needing help, they are discounted as being someone who will "never amount to anything"11so why bother and "lets give them meds so they will cooperate in the classroom until they can be exited with a "Certificate of Completeion" not even a Diploma and then they are your problem not ours"...

Also highlighting parents who for the most part either have lost their ability to fight anymore . they are overwhelmed with other children in the family, their own medical needs, jobs, bills several just give up and give in....There are also those parent who have kids that manages to circulate in the mainstream of school for the most part and get by while the parents are caught up in "Keeping up with the Jones".... They are more worried about buying the next new SUV or boat, where they are gonna go for their next vacation. putting new furniture in the house or painting their house again cuz the neighbor just did....instead of truly realizing they have a kid that's on the edge... They are numb , they don't realize this child needs help and they probably don't even know how to get it or give it...

The reason I write this is because I have had personal dealings and involvement with all of these types of situations .. I do not judge or say whats right or wrong .. What I know is a recently as December I took Dakota to a medical Facility that has been treating him since birth, they know him , they know his diagnosis yet when he displays a little bit of aggression or behavior ....do they react like medical professionals should????Hell No they call security...IN A FACILITY THAT HAS TREATED HIM SINCE BIRTH???????? W T F
Is it any wonder that they individuals who have committed these unforgivable crimes killing innocent children and adults  when the reaction from our own medical community is what I just described???/ AGAIN I AM NOT SAYING many are not guilty or even responsible for their actions what I am saying is people who are supposed to help situations by their training react like they are Joe Public right off the street .

I am all for letting some one possess a gun if the choose to .. I don't think they need and AK47 or a magazine that holds 10o's of bullets...and I do think that we need to regulate them to make sure people have a little sense and clean back ground... Do I think it will stop all of whats happening... NO      BUT my lament is much more simple  if adding Mental Health as a component to Gun Regulation prevents even ONE MORE FROM DYING then its the right thing to do.

Happy New Year 2013

With every New Year we all seem to have a feeling of renewal , fresh starts and aspirations to do things differently ; Either for health mental or physical or as a way to make ourselves feel better about something that seems "not Right" to us. 
As I explained in the last post, oh so long ago things have definitely been different around here and I to had given up on the notion of trying to change or alter life ...Things have been different yet all too much the same and it is something I have struggled with my whole life... I welcome the challenge and excitement of doing things differently yet the old demons of "sameness" follow me like a dark shadow ,,,accompanied by the whispers of disappointment when I don't do what I set out to do....As the years have rolled by I have become much more comfortable with myself and accomplishments, whether they happen or they don't and I would say that even those who know me sometimes  wonder why I think and do the way I do...
Again I would say that Autism has kinda put me in this space...
If I have learned no other lesson it is that you can have a grand master plan but when you add autism into the equation the formula can turn into something completely different.That's not to say you don't try that's just to say that you have to be open to alternate outcomes.
So many I have known over the years have had such structure, determination and commitment .... to their daily lives and accomplishments , I admire that . For the last 26 years I have always said "But they don't have autism as a factor"... Thats not to say they don't have bumps in the road or things to overcome however again and again I continue to segregate my situation from theirs on that premise.
The holidays have a way of highlighting this thought process and execution. The last part of the year is always a festive time and everyone has plans, traditions and gatherings. You talk to people on the phone or exchange Christmas cards or even speak to someone passing you n the hall at work and the air is full of things to do . Having family over for Thanksgiving or going skiing for the first winters snow or everyone getting together for the Rose Parade and football game . Shopping, cooking , visiting Santa Claus, wrapping. church or whatever........ 
Sometimes when you have an individual with Autism IT JUST DOESN'T FLY...
 I have said this  many times before all you can do is present the opportunity ..its up to the individual to decide whether they take it. What you have to do is prepare yourself for the outcome. You have to be OK if it doesn't go the way you want it too.. You have to be OK to realize that the person in side the body that is plagued with this nasty disorder is doing the best they can and if you push {at least too much} it will turn ugly for you and it will be a nightmare for them.
So my friends I love you all and I know each of us have our own set of circumstances
We just have to March to the beat of our drum .... not someone elses!!!
Happy New Year