BEST LAID PLANS

TODAY WAS SUPPOSED TO BE THE DAY THAT I TOOK DAKOTA TO HIS FIRST "SERVICE" MY INCLE HAD PASSED AWAY QUITE SOME TIME AGO BUT HE WAS GOING TO BE INTERRED AT THE NATIONAL CEMETARY AND HE ACTUALLY SEEMED INTERESTED IN THE WHOLE PROCESS .

I HAVE ALWAYS SAID THAT IF THEY ARE  OLD ENUF TO ASK THE QUESTION THEN THEY ARE READY FOR THE ANSWER

SO I MARKED IT ON THE CALANDER AND STARTED THE PROCESS OF TALKING ABOUT GOING . WE ALSO DISCUSSED IT WITH THE TEACHER AND AIDE  TO PREPARE DAKOTA FOR A  NEW EXPERIENCE--

THE DAY COMES AND HE SLEEPS IN JUST ABOUT THE TIME I  WAKE HIM  I REALIZE HE IS ALREADY AWAKE AND COMES OUT TO TELL ME THAT HE WANTS TO GO TO SCHOOL!!!! I WAS  SHOCKED AND OF COURSE SHOOK UP CUZ  ALL OF A SUDDEN  MY WHOLE DAY MY WHOLE PLAN WENT UP IN SMOKE.

JUST ANOTHER DAY IN THE LIFE OF  "LIVING WITH AUTISM" SHIFT GEARS AND GET ON WITH IT!  SO I HAD TO HUSSLE AND GET HIM OFF TO SCHOOL WHICH LEFT ME ABOUT A HALF AN HOUR TO GET READY FOR THE SERVICE  IN A NUT SHELL IT DROVE ME CRAZY  I GOT A LITTLE HUFFED UP BUT ONCE I TOOK A DEEP  BREATH  AND REALIZEDTHAT THERE  WAS SO MUCH MORE TO BE THANKFUL FOR   IT GAVE ME A DIFFERENT PERSPECTIVE AND ONCE AGIN TAUGHT ME THAT EVEN THE BEST LAID PLANS CAN GO DOWN  WHEN YOU LIVE WITH AUTISM---

ITS JUST A PART OF LIFE

THE CENTER

THE CENTER

FOR ANY ON LOOKERS WHO MIGHT WANT TO KNOW ABOUT THE CENTER THERE IS AN ENTRY ON 3-24 WHICH OUTLINES THE IDEA OF THE CENTER

I HAVE EXPANDED ON THE IDEA SINCE BUT HAVE NOT PUBLISHED IT AS OF YET BECAUSE IT CONTINUES TO BE A WORK IN PROGRESS AND I HAVE MORE TO COMPLETE

PLEASE FEEL FREE TO WRITE FOR ANY INFO YOU MIGHT WANT DAKSOPENDOOR@AOL.COM

 

THOUGHTS AFTER THE MEETING

KINDA HIT A WALL YESTERDAY BECAUSE THE GENERAL PROGNOSIS THAT I GOT FROM MORE THAN ONE EXPERT WAS THAT I WILL HAVE GREAT DIFFICULTY FINDING FUNDING FOR THIS BECAUSE IT IS TOOALL-INCLUSIVE.  THAT CERTAIN SOURCES WOULD FUND CERTAIN THINGS BUT NOT OTHERS AND THAT I NEED TO GO TO AREA 12 AND START PRESSURING THEM TO ADVOCATE FOR THIS  BECAUSE THERE IS NOTHING OUT THERE FOR THESE KIDS THAT ARE TRANSITIONING FROM HIGH SCHOOL -- MY BIGGEST PROBLEM  ;  THE REALITY IS THE "BIGNESS" OF THE CENTER AND THE FACT THAT I WANT TO DO SO MANY DIFFERENT THINGS  WILL PROBABLY BE THE REASON I HAVE DIFFICULTY FUNDING IT---ITS SO STUPID BECAUSE AS A PARENT  OR EVEN A PROFESSIONAL  LOOKING FOR  SERVICES FIND THEY ARE SO FRAGMENTED ;  THERE IS NO CONTINUITY OR COMMON THREAD. I WANT THIS CENTER TO PROVIDE THAT --THE ONLY WAY IT CAN BE THAT ; IS FOR IT TO BE AS INCLUSIVE  AS I HAVE DESIGNED--- ITS A CATCH 22 ONE OF THE OTHER PROBLEMS THAT BOTHERS ME IS THAT I DONT WANT TO CHALLENGE THE STATE OR ANY OTHER AGENCY TO PROVDE THIS BECAUSE IT WILL BECOME SOMETHING TOTALLY DIFFERENT IN THE END. THE CENTER IN ITS PUREST FORM IS ONLY GOING TO BE EFFECTIVE IF IT IS PRIVATE ENDEAVOR ..   LETTING A STATE AGENCY BE INVOLVED IN ANYMORE THAN FUNDING MEANS WE HAVE TO DO THINGS BECAUSE THE OF A STATE MANDATE . OR WE ARE RESTRICTED FROM DOING THINGS BECAUSE OF THE STATE'S INVOLVEMENT . I KNOW I WANT MY CAKE AND EAT IT TOO THE STATES MONEY BUT NOT THEIR SAY-SO I SOUND LIKE A TEENAGER LIVING AT HOME WHO WANTS FREEDOM AND ALL THE LUXURIES OF HOME BUT DOESNT WANT TO LISTEN OR DO WHAT MOM AND DAD WANT!!! I CAN FEEL THIS CENTER IN MY BONES AND I KNOW THERE IS A NEED FOR IT JUST THE WAY IT IS IN MY HEAD AND WHAT I HAVE ON PAPER BUT I AM NOT SURE IT WILL EVER COME TO FRUITITION   WHAT I THINK IS THAT I DONT WANT THE PARENTS TO BE BURDENED WITH PAYING FOR MOST OF THE SERVICES  THE CENTER PROVIDES  .  SO; THAT JUST ABOUT ELIMINATES CREATING IT AS A  PROFIT MAKING BUSINESS  BUT IT SEEMS TO BE THE ONLY WAY I CAN MAKE IT WHAT IT SHOULD BE----- THE OTHER SIDE OF THAT COIN IS THAT  MOST OF THESE PARENTS HAVE BEEN PULLED IN EVERY DIRECTION WITH SO MANY "CURES AND STRATEGIES " POTIONS AND  PILLS" AND I SEE IT EVERYDAY IN THE ON-LINE SUPPORT GROUPS THE DOUBT THAT ERUPTS IN THE PARENTS : THAT PEOPLE ARE ONLY IN IT FOR THE MONEY  ; THAT WE ARE EASY TARGETS BECAUSE WE ARE SO DESPERATE TO FIND A "CURE". MOST OF THESE PARENTS AND CARE GIVERS  ARE WORKING AN EXTRA JOB OR HAVE TAKEN A JOB THAT IS FROM HELL BECAUSE IT HAS SOME BENEFIT FOR THEIR CHILD .EITHER BY WAY OF ACTUAL BENEFITS OR THE HOURS ACCOMODATE THE CARE OF THEIR CHILD--- THEY ARE TIRED , WEARY, FRUSTRATED, FED-UP, CONFUSED YET THEY TRUDGE ON FOR THE LOVE AND DESIRES THEY HAVE FOR THEIR CHILD  AND THE WHOLE FAMILY.     I CANT TELL YOU HOW MANY TIMES I HAVE READ ABOUT FAMILIES SCRAMBLING TO GET INSURANCE TO PAY FOR A TEST  OR ONE MOM WORKING WITH ANOTHER MOM TO POOL THEIR KNOWLEDGE FOR THE BEST OUTCOME. ONE OF THE MOST RECENT SUBJECTS ON ONE OF THE AUTISM SUPPORT GROUPS IS THE FACT THAT THE DA N   DOCTORS {DEFEAT AUTISM NOW} {ITS A BIO-MEDICAL APPROACH ] CHARGE  A MINIMUM OF $300 AN HOUR  AND ONE MOM EVEN WROTE ABOUT THE FACT THAT IN ORDER TO GET THE LAB RESULTS ON HER CHILD, FROM THE DOCTOR ,  SHE HAD TO CALL IN WITH A CREDIT CARD SO THE DOCTOR COULD CHARGE HER A HALF AN HOUR FOR A PHONE CONSULTATION  -- NOT TO MENTION THE FACT THAT THE MAJORITY OF INSURANCE CARRIERS DO NOT COVER OR RECOGNIZE MOST OF THE THERAPIES  IN THE DAN  PROTOCOL   SO ITS ALL OUT OF POCKET   HOW CAN I SERIOUSLY JUSTIFY CREATING A CENTER WHERE PARENTS HAVE TO PAY? MAYBE I SHOULD CONSIDER MAKING IT LIKE A GYM AND SELL MEMBERSHIPS --   PEOPLE SIGN UP FOR GYMS ALL THE TIME TO MAKE THEIR BODIES  BETTER SO IF I HAVE A CENTER THAT PROVIDES  SERVICES FOR THESE KIDS  A MONTHLY OR YEARLY  STIPEN MAY BE THE WAY TO FUND THIS THING-- ESPECIALLY OF IT COULD BE AFFORDABLE I ONE BIG DRAW BACK I SEE IN THAT IS --I WANTED THE PARENTS AND OTHERS TO BE A BIG PART OF THE CENTER AND VOLUNTEER BECAUSE THEIR KNOWLEDGE AND INPUT IS VALUABLE . PERHAPS THE ":MEMBERSHIP" WOULD INCLUDE A REQUIREMENT OF VOLUNTEER HOURS IN ORDER TO MAKE IT AFFORDABLE FOR FAMILIES??    THIS CRAP HAS BEEN MUDDLING AROUND IN MY HEAD SINCE LAST NIGHT AND I AM SO SURE WE NEED THIS TYPE OF FACILITY --- I AM TIED UP INSIDE MY HEAD HOW TO MAKE IT HAPPEN- WELL THEY DONT CALL ME RELENTLESS FOR NOTHING I WILL NOT GIVE UP  I KNOW THERE HAS TO BE A POINT WHICH I REALIZE IT IS ALL BIGGER THAN ME BUT FOR NOW I AM STILL COMMITTED TO FORGE ON  AND HIT MY HEAD AGAINST THE WALL A FEW HUNDRED MORE TIMES BEFORE I EVEN CONSIDER TO GIVING UP THE SHIP.   I GOT SO CARIED AWAY BUT I JUST HAD TO UNLOAD  .  I AM SO INCREDIBILY FRUSTRATED BECAUSE I HAVE SEEN HOW MUCH I HAVE FOUGHT FOR DAKOTA AND HOW LITTLE I ACHIEVED .  HE AND MANY OTHERS HAVE SO MUCH POTENTIAL AND THEY ARE WRITTEN OFF ,  IGNORED, DISCRIMINATED AGAINST,SHUNNED ,AND WORST OF ALL NO ONE HAS THE TIME, ENERGY OR INFORMATION TO MAKE IT EASY TO HELP THESE KIDS--- THAT WHY I WANT SO MUCH FOR THIS CENTER TO WORK    

A Letter-To Someone Interested in the Center

I wanted to make an effort to sit down an write you an email to let you know what I am trying to accomplish by trying to start this center I have been sending out information on----  You have sent me one email indicating that you were interested in meeting  and you wanted to share with me the project at the station as well as see if this center may fit in somehow. I don't know if you were able to see the Nightline show {ABC @11:35 p.m.}  on Friday night but it was exactly what I am trying to capture in this Center.  It  specifically talks about the growing numbers of children who are becoming "adults" and there is no place for them to go, no place for them to be included, no one to guide them.Of course the narrator  spoke of personal family afflicted with autism and also talked about the growing statistics and the fact that there is no plan for these kids  Plain and simple something has got to be done and I hope that I can be a part of that solution.   As a parent of an emerging  adult  with autism it was always my focus on health issues , academic and social opportunities with in the school setting and when your kids are small you are so entangled with those things that it becomes overwhelming to consider the "bigger picture"--I dont think I need to tell you that as I know you have your own personal  struggles and experiences  What I have found is that the services and placements for our kids as they grow is fragmented and often not appropriate. I dont pretend to say that my guy is better off than others with challenging disabilities but what separates him from some of the others is that he has the ability to get his  foot in the door many places that kids with physical disabilities wont . His social skills and behavior are the major things that mask his otherwise normal IQ    So that all being said I am on a bandwagon to do something about it! Somehow I went all thru school fighting for Dakota and always feeling that I would get 2 steps forward and somehow fall 1 and 1/2 steps back through the process-- now I think I have the ability to rally the troops for something I think is on the cutting edge of Autism in the future-- A place that services anyone with a need--I want to fashion it like the IEP- what the individual needs of the client or family or professional needs. If the family only wants support groups fine  if an individual needs social; recreation or training in some area   OK  or if a professional needs to observe or to have some one do  "in service" for them i want this Center  to be there for what ever the need.   I have been told its extremely ambitious  I know that  I also know there is a need and there are parents and others who can and will support this project So I press on --with or without the blessing of traditional  support       I have a plan in my head and its screaming to come out and I welcome anyone who is interested and anyone who can help I will be happy to forward any info you might want I would love to have your support and involvement. Currently I have 4 different professors from 4 different colleges , several people who have businesses which assist kids with Autism and a pretty good base of parents who have met  once and are getting involved. I am looking for possible locations and I have a meeting Monday to speak to an attorney about the non profit  status.

More About the Center

I am so determined that this place has a purpose for so many I just cant see it not happening ! The biggest problems to date are my apprehension that parents don't get it  and don't realize that its a place for them as much as a place for their family. It will only flourish if others have a commitment to be involved  and make it what they want-- speaking as one who has been thru where others are at having little ones , it is hard to see passed the school years because it seems like a lifetime away  but trust me even with the struggles it happens way too fast and then they will find out that there is no place to go and what is out there is not appropriate-- Did anyone watch the "Nightline" Program Friday??{October 7,2005 on ABC @11:35 pm} it was called a Place in the World and it was about Autism and the growing numbers who are becoming adults and there is no place for them.The parents are working frantically to do similar things that I have in mind but you can see the worry on their faces---  The biggest fear is what will my child do once I am gone? It is not something you want to think about-- because in reality you can even have a plan but it doesn't guarantee that will happen. I have met so many parents that express their inner most thoughts about even hoping that their child passes before them because then they know that they wont be in the world without someone to help them , I know that sounds awful but it is unfortunately true. No one knows if the people we leave behind will "belly up to the bar" and take on the responsibility we have left for them even in the greatest plan with siblings and extended family things go wrong and sometimes human nature doesn't always do what it is suppose to do  Sooooooooooo I am getting morbid  Sorry   I have just heard too many stories We just have to get this Center going for so many reasons-- hopefully it will sustain many long after I am gone .I hope that some of the kids will be able to be a part of running it too! Maybe one day establish a Living Strategy or even getting back to the "old hippie days" of commune living  done the right way!!!!   People need to see the purpose and passion behind this center  I its just not a Center it has to be an Oasis-- maybe that would be a good name for it!!!!!Hmmmmmmmmmmm Oasis sounds really good

SIGNING AN IEP

HERE IS A SENARIO OF ONE  FAMILY WHOS HAVING TROUBLE AND MY REPLY TO HELP THEM UNDERSTAND THEIR OWN POWER THROUGH THE IEP{INDIVIDUAL EDUCATION PLAN}

Here is the info I received from her:    His 3rd b-day is Oct 10. Our IEP was Oct 6 and we didn't receive their assessments until Oct 5.  In addition, they are starting a new special ed class at Village View and want to put him in there. We have had no opportunity to see the other SDC classes available so we just want to be able to continue services for a few weeks until we have all the info. For that we need a lawyer to place a "stay put". 
 Does anyone have an attorney they would recommend?     question????DID YOU SIGN THE IEP??? IF NOT YOU ARE AUTOMATICALLY IN A STAY PUT MODE  NO LAWYER NEEDED FOR THAT ALSO IF YOU CHOOSE YOU CAN WRITE A LETTER AND DELIVER IT TO THE DISTRICT ON MONDAY ASKING FOR AN EMERGENCY IEP THEY HAVE I BELIEVE 15 TO 30 DAYS TO RECONVIEN AND ONCE AGAIN YOU ARE INAN AUTOMATIC STAY PUT SITUATION!!! CALL THE IEP ON THE BASIS OF LEAST RESTRICTIVE ENVIROMENT AND BEING ABLE TO VISIT AND ASSESS PLACEMENT THE DISTRICT SHOULD EXPITE YOU VISITNG ALTERNATIVE PLACEMENTS! I HOPE THAT HELPS!!!    ADDITIONAL INFO I PROVIDED FOR OTHERS ON OUR SUPPORT GROUP ABOUT NOT SIGNING THE IEP AT THE MEETING:     ONE MORE THING SOMETHING I LEARNED A LONG TIME AGO WAS NEVER AND I MEAN NEVER SIGN THE IEP AT THE MEETING--ITS OK TO SAY YOU ATTENDED THE MEETING BUT TAKE THE PAPERS HOME SET THEM ASIDE UNTIL EVERYONE IS ASLEEP OR YOU HAVE QUIET TIME EVEN IF IT IS IN THE BATHROOM AND REALLY LOOK THEM OVER MAKE SURE ALL THE GENERAL INFO IS RIGHT INCLUDING ADDRESSES AND OTHER STUFF AND READ EVERY WORD ESPECIALLY THE D I S { DESIGNATION INSTRUCTIONAL SERVICES AND THE NARRATIVE PAGE AND MAKE SURE THE WORDING IS HOW YOU WANT IT AND THERE ARE NO DOUBLE MEANING TO THE WAY SOMETHING IS READ   BE PICKY AND MAKE THEM RE CRAFT THE WORDING IF YOU DONT LIKE IT --- IT CAN BE DONE WITHOUT RECONVIENING I WOULD USUALLY MEET WITH THE HEAD DISTRICT PERSON IN HER OFFICE AND WE WOULD REWRITE WHATEVER NEEDES WORDSMITHING....... OK I HOPE THAT HELPS   SO JUST AN EXAMPLE OF ONE FAMILY WITH ONE PROBLEM THAT CAME THRU MY EMAIL TODAY MULTIPLY THAT BY ABOUT A MILLION AND THATS HOW MANY PEOPLE WHO ARE HAVING STRUGGLES WITH SCHOOLS AND SERVICES THAT WE HAVE TO FIGHT FOR    NOT PARTNER WITH   BUT FIGHT FOR IT SHOULFNT BE THAT WAY!!!!!!!

BOY AM I BEHIND

WELL ITS BEEN  ABOUT 3 WEEKS SINCE WE GOT BACK FROM DISNEYLAND AND I AM NOW JUST GETTING INTO THE GROOVE OF THINGS---

MY FOCUS RIGHT NOW IS DAKOTAS FOOT AND LEG AND ALL THAT GOES WITH IT   HIS IEP WHICH I JUST HAD LAST WEEK AND TRYING TO CONTINUE TO PUT THIS CENTER TOGETHER--        I AM BECOMING MORE AND MORE ENCOURAGED AS I CONTINUE THIS QUEST AS I AM FINALY STARTING TO MAKE CONTACT WITH PEOPLE THAT CAN HELP ME MAKE THIS HAPPEN

I WILL BE WORKING ON A MORE INTENSE  AND IN DEPTH PLAN FOR THE CENTER ON WORD AND WHEN I GET IT DOWN TO A FILE I WILL POST IT ON THIS SITE.

I PLAN TO REALLY BUCKLE DOWN AND BE MORE TIMELY  WITH THE JOURNAL  NOT OLY TO HELP ME WITH MY SANITY BUT ALSO BACUASE OTHERS  ARE  NOW  STARTING TO READ IT AND RESPOND TO ME . IT IS FINALLY STARTEDING TO BE WHAT I INTENDED FROM THESTART WHICH IF TO CREATE A NETWORK AND A FORUM .

BEHIND --I AM   BUT NOT FOR LONG!!!!! 

BUILD IT AND THEY WILL COME

HELLO
At our last meeting one of the parents suggested that we name our center "Field of Dreams" on the premise--IF YOU BUILD IT THEY WILL COME

I am smart enough to know that we will not always  be lucky enough to accomodate every person all the time but that is what the intent of this center is and it will be with the input of parents and others who live with Autism everyday to create what they want with this center---

Sooooooooooo  for those of you who are not attendeing the TACA meeting
I invite you to come to Dr. Stanley Swartz's office
                        206 East State Street
                        Redlands, California
                      
                        OCTOBER 15 TH @ 2:PM
                        SATURDAY
To continue discussion on getting this Center started---
we will continue to discuss needs and wants of the families as well as establishing a non profit organization  and continuing to look for a permenent location.
please RSVP to daksopendoor@aol.com
we have room for about 75  so it would be nice to have an idea of those who can come
for right now
I dont have info about accomodations for children
I will post more as info becomes available----
thank you
cindy