THE DENTAL CLEANING!

WELL YESTERDAY DAKOTA WENT TO HIS  DENTAL CLEANING -- FOR MOST OF YOU WHO HAVE TYPICAL CHILDREN ITS VERY ROUTINE BUT FOR ANYONE WITH AN AUTISTIC CHILD   -THEY KNOW JUST WHAT A BLESSING IT IS TO HAVE A KID THAT WILL WALK IN TO THE OFFICE AND SIT DOWN IN "THAT" CHAIR AND EVEN ALLOW SOMEONE TO LOOK IN THEIR MOUTH  MUCHLESS  DO ANYTHING!!

WELL  WE ARE FORTUNATE DAKOTA HAS THIS PARTICULAR  ABILITY-- HE HAS EVEN GONE WITH ME WHEN  I HAVE HAD MY TEETH  CLEANED AND SAT, THATS RIGHT FOLKS SAT, IN THE ROOM FOR THE DURATION  WITHOUT INCIDENT--YIPEEEEEE      I AM TELLING YOU  THERE ARE NOT MANY WHO CAN BOAST ABOUT AUTISTIC KIDS BEING CAPABLE OF THIS- - - -   THE STORY DOES NOT END  THERE   NOT ONLY DID HE GET HIS TEETH  CLEANED BUT HE HAD AN EXCELLENT CHECK UP WITH A REPORT THAT HIS WISDOM TEETH HAVE COME IN WITHOUT ANY PROBLEMS BUT THE BEST NEWS OF ALL  IS THIS- - - DAKOTA NEVER ALLOWED THE HYGENIST  TO  POLISH HIS TEETH, HE NEVER HAD A PROBLEM WITH THEM BEING SCALED AND FLOSSED BUT HE WOULD NOT ALLOW HER TO POLISH THEM,YESTERDAY FOR THE FIRST TIME HE DID!!!!!   

THIS WAS SUCH A BIG STEP AND I THINK HIM COMING WITH ME THE PAST 2 TIMES I HAD MY TEETH CLEANED AND HE SAW HOW I LIKED IT AND I WANTED HER TO POLISH  MINE  THAT HE FINALLY DECIDED THAT IT WAS OK TO HAVE HER DO IT!!

I AM SO PROUD OF HIM AND HIS INCREASING ABILTY TO GO TO THE DENTIST AND BEHAVE SO WELL!!! HE GETS KUDOS FROM  ME !!!!!

THE HANDS

I HAVE BEEN THINKING ABOUT THIS TOPIC FOR A COUPLE OF WEEKS  AND JUST FEEL THE TIME IS RIGHT AND I HAVE MY THOUGHTS ORGANIZED TO WRITE ABOUT THIS---

I HAVE BEEN PRETTY LUCKY WITH DAKOTA -- VERY EARLY ON  I STARTED TRIMMING HIS NAILS  ON HIS HANDS AND FEET AS WELL AS DEVISING WAYS TO  GET HIM TO LET ME CUT HIS HAIR  AND BELIEVE ME I  HAVE HEARD HORROR STORIES FROM  MANY WHO CANT GET NEAR THEIR AUTISTIC CHILDREN WITH SCISSORS , CLIPPERS OR NAIL FILES.                                                          I THINK THAT I ALREADY POSTED AN EXERPT ABOUT "FINGERS FORD" AND WHAT WE WENT THROUGH WITH THE BANDAIDS ON HIS FINGERS AND HOW HE MANAGED TO QUIT CHEWING HIS NAILS  AND NOW HE HAS BEAUTIFUL HANDS-- IT IS ALL PHASES--

THERE  IS QUITE A DISCUSSION AMONG THOSE OF US WHO LIVE WITH AUTISM ABOUT BEHAVIORS EXCHANGING  PLACES-IN OTHER WORDS YOU MAY BE ABLE TO GET YOUR CHILD TO QUIT CHEWING ON A TOWEL BUT THEN HE WILL  START TWISTING HIS HAIR -- SO YOU ALWAYS HAVE TO BE AWARE OF WHAT YOU WISH FOR BECAUSE YOU MAY END UP WITH  A DIFFERENT BEHAVIOR THAT MIGHT BE HARDER TO TOLERATE OR LESS APPROPRIATE THAN THE ONE THE CHILD ALREADY HAS -- KINDA THE LOGIC OF BE CAREFUL WHAT YOU WISH FOR-- GRANTED SOME OF THESE BEHAVIORS CAN DRIVE YOU STRAIGHT UP THE WALL BUT YOU ALWAYS HAVE TO BEAR IN MIND THAT THERE IS A REASON FOR THE STIMULATION AND UNTIL YOU CAN FIGURE OUT WHAT THAT IS   AND YOU MAKE NEVER   --ITS IS AN ABSOLUTE THAT YOUR CHILD WILL SEEK OUT SOMETHING TO QUELL THE FEELING S AND STATIC IN HIS HEAD. ITHE KEY IS TO FIND SOMETHING THAT IS AGE APPROPRIATE FOR YOUR CHILD AND SOMETHING YOU CAN LIVE WITH BECAUSE YOU JUST CANT SHUT DOWN THAT STIMULATION AND EXPECT THE CHILD  COPE .

ALL THAT COME BACK TO THE STRUGGLES I HAVE HAD AND BEEN HAVING WITH THE HANDS!!!! YES HE HAS STOPPED CHEWING HIS NAILS DOWN TO THE QUICK AND HE DOES ALLOW ME TO CLEAN TRIM AND FILE HIS NAILS NOW  BUT I HAVE RECENTLY DEDUCTED WE HAVE A N MORE SIGNIFICANT ISSUE. I THINK IT IS TACTILE AND I AM NOT SURE  THIS WILL GO AWAY-- THIS IS WHAT I HAVE EXPERIENCED

1.DAKOTA HAS BEEN ADAMANT ABOUT REFUSING TO PARCIPATE IN WASHING HIS HAIR  THAT HAS BEEN FOREVER       2.SINCE THE NAILS HAVE RETURNED HE HAS BEEN VERY PARTICULAR ABOUT THE PLACEMENT OF HIS HANDS WITH FINGERS OPEN AND GENTLY PLACED ON HIS LEGS  WHENEVE HE SITS DOWN                                                                                   3.THERE IS AN ONGOING BATTLE ABOUT WASHING HIS HANDS  HE IS EXTREMELY DIFFICULT TO GET TO WASH HIS HANDS THERE HAVE BEEN MANY BATTLES OVER THIS AND  AT THIS TIME THE ONLY WAY HE WILL WASH IS WITH HAND SANTINIZER THAT I HAVE TO CHASE HIM AROUND WITH SMEAR IT ON HIS HANDS AND THEN HE WILL GO TO THE SINK AND RINSE IT OFF---

SO FROM  MY " OBSERVATIONS AND  THINK TANK"  I HAVE COME OUT WITH THIS CONCLUSION  : I HAVE DECIDED THAT ALL THESE THINGS ARE TIED TO HIS INABILITY TO TOLERATE THE FEELINGS OF SOAP ,SHAMPOO OR OTHER TEXTURES ON HIS HANDS--WHICH  IN  TURN CAUSE HIM TO HAVE BEHAVIORS THAT CAUSE THE WAR BETWEEN  US.             I  HAVE TRIED TO EXPLAIN THE IMPORTANCE OF WASHING HIS HANDS AND HIS INDEPENDENCE IN WASHING HIS OWN HAIR   BUT I AM CONVINCED THAT THE PROBLEM IS MUCH BIGGER THAN LOGIC.

SO NOW THAT I HAVE IDENTIFIED  THE REASON FOR THE BATTLES  I HAVE TO GET A GAME PLAN   THE ONLY THOUGHT I HAVE RIGHT NOW IS THAT I HAVE TO SOMEWAY DESENSITIZE HIS  HANDS . THE FUNNY THING IS THAT HE DOES EXCEPT MANY TEXTURES  BUT THERE IS A SPECIFIC TARGET I HAVE TO FOCUS ON.  I AM GOING TO TRY SCRUBBING HIS HANDS BUT I THINK IT IS MORE THE "SLIME" FACTOR  SO MAYBE SOME JELLO???? NOT SURE     I WILL KEEP DOCUMENTING  UNTIL I SUCCEED- - - - - HOPEFULLY

NEEDLESS TO SAY  THIS IS A MINOR  ISSUE BUT AN IMPORTANT ONE NOT ONLY FOR HIS HEALTH AND WELL BEING  BUT SOCIALLY TOO!  

ONCE AGAIN WE WANT OUR CHILD TO DEVELOPE  HIS OWN INDEPENDENCE AND OWN PERSONALITY TRAITS  BUT THERE COMES A TIME WHEN WE AS CARE TAKERS AND THE  SHAPERS OF AN AUTISTIC S  BEHAVIOR HAVE TO  PICK THE BATTLES THAT MATTER  -- THE ONES THAT WILL HELP OUR KIDS BLEND  INTO THE COMMUNITY  NOT STICK OUT!

 

QUICK UPDATE ON THE CENTER

JUST A QUICK NOTE ABOUT MY CONTINUING DREAMS OF STARTING A CENTER FOR AUTISM

THINGS ARE AT A SLOW PACE BUT I HAVE NOT GIVEN UP MOSTLY THE GENERAL OPINION IS THAT IT IS TOO AMBITOUS AND TOO BROAD  SPECTRUM FOR PROVIDING SERVICES --STILL    I  PRESS  ON

I WILL NOT GIVE UP HOWEVER AT THIS POINT THERE IS A NEED FOR SEVERAL THOUAND DOLLARS TO ESTABLISH A NON PROFIT ORGANIZATION  AND I AM RESEARCHING FURTHER TO TRY TO FIND  PEOPLE WHO MIGHT BE INTERESTED IN              "PRO-BONO " WORK TO GET THIS THING STARTED---

IT HAD BEEN SUGGESTED THAT I APPROACH                                     ACE ATKINSON  TO ADVOCATE  FOR  THESE SERVICES OR THIS IDEA  AND PVW HAS APPROACHED ME ABOUT A POSSBLE PARTNERING WITH THEM.  IF AND WHEN THE NON PROFIT IS ESTABLISHED   THERE CAN BE APPLICATIONS FOR GRANTS BUT THE FALICY OF THAT IS SOMETIMES GRANTS CAN BE ONE TIME  GIFTS SO I NEED TO DEVELOPE A PLAN FOR CONTINOUS FUNDING TO KEEP THE DOORS OPEN.                   I HAVE BEEN BRAIN STORMING  IDEAS TO KEEP MONIES COMING IN  I THOUGHT THAT  SOMETHING ALONG THE LINES OF A GYM MEMBERSHIP MAY BE A POSSIBLE ANSWER WHICH WOULD ENABLE ANYONE WHO PAYS A NOMINAL  FEE  PER  MONTH OR PER YEAR WOULD HAVE FULL  USAGE OF THE FACILITY FOR WHATEVER NEED WHETHER IT BE A SUPPORT GROUP  OR USE OF THE LIBRARY OR TRAINING FOR THEIR CHILD---

NEVER-THE=LESS  I WILL CONTINUE TO HOLD ON TO THE DREAM  I KNOW THAT THERE IS A NEED AND I KNOW THAT  THERE ARE PEOPLE OUT THERE WAITING TO GET INTO THE PROGRAMS THAT ALREADY EXSIST  SO I WILL CONTINUE TO TRY TO CREATE THIS CENTER!  

ANOTHER EXERPT

I RECENTLY  RESPONDED TO A MOM THAT WAS DEALING WITH THE FRUSTRATION FOR NOT BEING ABLE TO CONVEY TO HER SON  THE IMPORTANCE OF  DOING  A SPECIFIC TASK AND SHE  RELUCTANTLY SAID THAT SHE WAS TRYING SOMETIMES  TO FIT HER CHILD INTO A MOLD  LIKE EVERYONE ELSE IS TRYING TO DO -- AND  WITH THAT THIS IS  PART OF MY RESPONSE: 

THE ONE STATEMENT THAT STICKS OUT IN MY HEAD FROM YOU FIRST LETTER IS SOMETIMES YOU JUST WANT TO SMAK TODD ---I CANT TELL YOU HOW MANY TIMES I HAVE BEEN THERE AND ALTHOUGH LOVE EXUDES FROM MY BLOOD FOR DAKOTA  THE FRUSTRATION JUST TAKES OVER SOMETIME AND YOU JUST CANT CONVEY TO THEM HOW IMPORTANT SOMETHING IS OR HOW IMPORTANT IT IS THAT THEY UNDERSTAND HOW SOMETHING WORKS AND THE REAL SLAMMER IS THAT  MOST OF THE TIME ITS WAY MORE IMPORTANT TO ME IN MY "NORMAL " WAY OF LOOKING AT THINGS THAN  IT IS TO DAKOTA IN HIS WONDERFUL WORLD OF AUTISM ONCE THE HEAT OF THE MOMENT FADES OR YOU HAVE TIME TO STEP AWAY FROM THE SITUATION  I FIND THAT HALF THE TIME I WANT TO SMAK MYSELF INSTEAD FOR BEING SO STUPID TO EXPECT DAKOTA TO CHANGE SOMETHING THAT IS MY PROBLEM AND NOT HIS. I AM ALMOST CONVINCED THAT THEY ARE FORTUNATE TO HAVE THE ABILITY TO PLACE IMPORTANCE ON THE THINGS THAT MAKE THEM HAPPY AND BE DAMNED THE REST OF THE WORLD ; IF YOU DONT GET IT       CUZ ALL THEY CARE ABOUT IS WHAT MAKES THEM HAPPY AND COMFORTABLE--- I THINK A VALUABLE LESSON FOR MORE THAN JUST THOSE OF US WHO LIVE WITH AUTISM BUT FOR  ALL PEOPLE IN GENERAL-- ASIDE FROM BEING CONSIDERATE OF OTHERS FEELINGS AND RESPECTING PEOPLES PRIVACY AND PROPERTY  I THINK THAT THIS WORLD WOULD BE A WHOLE LOT BETTER OFF IF WE WERENT SO CAUGHT UP IN "KEEPING UP WITH THE JONES" AND "KEEPING UP APPERANCES"     AND OUR KIDS ARE STELLAR EXAMPLES OF TEACHING US THE ABILITY TO FOCUS ON WHAT MAKES  A PERSON HAPPY AND COMFORTABLE. WE JUST HAVE TO BE OPEN TO LEARN FROM THEM  INSTEAD OF TRY TO AS YOU SAID FIT THEM INTO A MOLD THAT SOCIETY PREDICTS!!!!   

PARENTS BEWARE!!!!

HELLO

JUST THIS EVENING I RECIEVED AN  EMAIL FROM A SET OF PARENTS THAT ARE HAVING TROUBLE WITH A LAW FIRM HERE IN SOUTHERN CALIFORNIA

I KNOW NOTHING MORE OF THE INCIDENT  THAN WHAT IS STATED IN THE LETTER BUT I FELT COMPELLED TO BOND WITH THESE PARENTS AND RESPECTFULLY PASS ON THEIR INFORMATION    THERE IS AN EMAIL ADDRESS ON THE BOTTOM IF YOU HAVE ANY OTHER QUESTIONS

Bonnie Yates – Parent Advocate or Parent Opponent

 

We are the parents of a non-behavioral Autistic 9-year-old boy.  We recently had the misfortune of being on the receiving end of the legal services of Bonnie Yates of Culver City, California. We are writing this letter in order to warn parents not to work with Bonnie Yates because of an inherent conflict of interest.  Bonnie Yates had developed a niche of representing Private Schools against parents while at the same time representing parents as their “bread and butter” business.

 

Background: For the last 3 years our son has received intensive therapy provided by Aces of San Diego. In July 2005, he started attending Aces Academy, a private day school run by the same people who own Aces. We were in the process of finalizing goals with the staff of the school and preparing for his annual IEP when we received a letter from Bonnie Yates telling us not to bring our son back to the school.

 

Highlights of the “eviction”.

1)      We received no warnings or indications that there was a problem at the school. In fact 2 weeks before receiving the letter we had a meeting with the principal to develop the goals to incorporate in the new IEP.

2)      This letter was taped to our front door on the Sunday of the Thanksgiving Weekend.

3)      We were given no time to transition our son. This was effectively a next day termination.

4)      The letter provides no remedy that we the parents could employ. It was not open to negotiation.

 

Anyone who works with autistic children knows that transitions are very difficult for them. If this school did not want our son to remain on their premises, there is a proper and moral way to transition him to a new placement. The harshness of their treatment and legal actions belie the fact that they are representatives of parents. Bonnie Yates has a law firm with a new idea – How to use parents’ money to support their efforts to fight against other parents.

 

Parent of Special Needs Children unite and boycott Bonnie Yates. Do not give her the fuel to fight other parents. There are many other attorneys who can help.

 

Please post this message on every site and newsletter that is used by Parents.

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PS Anyone who wants to read the original letter, please email dshkedy@san.rr.com

HELLO 2006

WELL HELLO 2006 AND TO ALL THOSE WHO READ!!!!

WELL 5 DAYS INTO THE NEW YEAR AND I JUST FEEL IT IN MY BONES IT HAS TO BE BETTER THAN 2005!                                                          OTHER THAN THE TRADITIONAL HAPPENINGS  AROUND THIS TIME OF THE YEAR I GOT THE WONDERFUL OPPORTUNITY TO ATTEND A HEARING ON MY PARENTAL VOUCHERED RESPITE TODAY-- I WILL GET TO THAT IN A MINUTE BUT I WANT TO  SAY SOMETHING ABOUT  NEW YEARS----

JUST WONDERED HOW MANY OF YOU HAD "ISSUES" WITH YOUR KIDS WHEN  IT CAME TO THE HOLIDAYS??  ITS PRETTY WELL KNOWN THAT THE HOLIDAYS ARE JUST A FIASCO FOR OUR KIDS   CHAOTIC, UNPREDICTABLE AND ANXIETY RIDDEN. INTERRUPTED ROUTINES, FACES THEY ONLY SEE ONCE A YEAR, LIGHTS  AND DECORATIONS THAT ONLY APPEAR  AROUND THE HOLIDAYS --   WELL WHAT ABOUT THE NEW YEAR??? ANY OF YOU HAVE KIDS THAT  LIVE BY THE CALENDAR??? WHAT ABOUT NEW YEARS FALLING ON A SUNDAY BUT BEING CELEBRATED ON A MONDAY ?? YEP THATS RIGHT  IT CAN TURN THEIR WHOLE LIFE UPSIDE DOWN. WHEN SOMETHING AS SECURE AS A CALENDAR SAYS ONE THING BUT US HUMANS SCREW WITH  IT??  NO  MAIL  NO SCHOOL   NO BANKS OPEN BUT ITS THE 2ND-- "MOM ITS NOT THE 1ST---WHY??"  WELL HOW BOUT THAT ROSE PARADE???  WE WENT OVER THE EXPLANANTION THAT LONG AGO THERE WAS AN AGREEMENT MADE THEY WOULD NEVER HAVE THE PARADE ON A SUNDAY AND ALL THE REASONS THAT GO WITH  IT  BUT THANK GOD FOR KTLA CHANNEL5   THEY PLAYED THE ROSE PARADE ON A CONTINOUS LOOP FROM 8 AM  TILL 10 PM -- DAKOTA WAS IN HOG HEAVEN-- TALK ABOUT "FEEDING THE MONSTER"   THAT  CONTINOUS AIRING WAS  THE ANSWER TO PRESEVERATION  PRAYERS!!!!!! I NEVER SAW DAKOTA SO CALM  IT WAS ALMOST LIKE A DRUG   ----- NEEDLESS TO SAY HE HAS THE WHOLE PARADE MEMORIZED I HAD TO MAKE A SPECIAL EFFORT TO GIVE HIM REASONS TO BE PEELED AWAY FROM THE PARADE THROUGHOUT THE DAY OR HE WOULD HAVE BEEN A PERMENENT FIGURE IN FRONT OF THE TUBE!!!  OH AND THE RAIN JUST ADDED TO THE INTEREST IN HIS MIND>

NOW ON TO THE HEARING-- BRIEFLY I HAVEBEEN APPEALING TO INLAND REGIONAL CENTER {IRC} TO CONTINUE  PARENTAL VOUCHERED RESPITE  {PVR} FOR THE BETTER PART OF 2005.

IRC HAS EFFECTIVELY TAKEN 4300 CASES OF VOUCHERED RESPITE AND CONVERTED THE MAJORITY TO AGENCY RESPITE --WHICH  IN  MY EYES IS  NOT RIGHT.  AGENCY RESPITE HAS ITS PLACE AND USE BUT I STILL BELIEVE THAT PVR  SHOULD BE AN OPTION FOR THOSE OF US WHO WISH TO USE IT. IRC HAD APPROX.100 CHALLENGES TO THE BLANKET DECISION OF CONVERTING THE RESPITE AND ALSO 600+ CLIENTS OR THEIR SUPPORT  SYSTEM JUST GAVE UP AND ABDONDED RESPITE ALL TOGETHER--- RESPITE  IS A FORM  OF  PAID RELIEF FOR THE CARE GIVERS OF SPECIAL NEEDS CHILDREN AND ADULTS.   I HAVE GREAT ISSUES WITH THE CONVERSION FOR A NUMBER OF REASONS BUT PRIMARILY THAT IT WASNT PRACITCAL FOR OUR FAMILY DYNAMIC AND THE FACT THAT IT  VIOLATED THE LANTERNMAN  ACT  WHICH SPEAKS TO THE INDIVIDUAL NEEDS OF A CLIENT AND THEIR FAMILY OR SUPPORT SYSTEM..

AFTER GOING BACK AND FORTH FOR SEVERAL MONTHS  WITH  IRC - - - WE FINALLY MET FOR A HEARING TODAY-- ALTHOUGH I FEEL GOOD ABOUT THE HEARING I DONT HOLD MUCH HOPE THAT THE RULING WIL BE IN MY FAVOR. FROM INFORMATION  I HAVE RECIEVED FROM  OTHERS IT  IS NOT GOOD WHEN  IT COMES TO  FINDING ON THE SIDE OF THE PARENTS  -- BUT HERES WHAT I KNOW AND WHAT HAPPENED TODAY

I DID GET LUCKY AND DREW A JUDGE OTHER THAN THE ONE THAT MANY PARENTS HAD A NEGATIVE EXPERIENCE WITH-- AND I DO FEEL THAT THIS JUDGE ASKED MANY QUESTIONS THAT SEEMED TO LEAN TOWARD MY TRAIN OF THOUGHT-- THIS IS  AN ADMINSTRATIVE LAW JUDGE AND HE HAS TO RULE ON THE POINTS OF LAW HOWEVER THE MANTRA OF THE OFFICE OF ADMINSTRATIVE HEARINGS DOES STATE THAT THEY HAVE A COMMITTMENT TO  BE CREATIVE IN THEIR RESOLUTIONS --SO  WHO KNOWS??  IRC HAS ISSUES WITH COMPLIANCE  ON RECORDS FROM YEARS PASSED -- I  MADE SEVERAL POINTS ABOUT  TRAINING THE PARENTS TO PRODUCE THE KIND OF RECORDS THAY EXPECTED US TO KEEP SINCE THEY PROVIDED  NONE--  THE FACT THAT THE FORMS THAT HAVE ALL THE LEGAL DISCLAIMERS ABOUT MAINTAINING THESE RECORDS HAS GONE THROUGH 3 PERHAPS 4 REVISIONS  INCLUDING THE OMMISSION OF THIS DISCLAMIER  FOR PERHAPS UPWARDS OF 2 YEARS   AND THE SIMPLE FACT THAT IF THE FORMS WERE NOT FILLED OUT TO THE IRC REQUIREMENTS IN THE FIRST PLACE YOU SIMPLY DID NOT RECIEVE THE REIMBURSEMENT FOR  RESPITE  SO HOW CAN THEY DETERMINE YOU OUT OF COMPLIANCE WHEN  THEY ARE THE ONES CHECKING YOUR WORK BEFORE ISSUING THE CHECK???

THERE WERE OTHER POINTS COVERED ANDIT WAS A VERY INTERESTING EXPERIENCE-- I LEARNED A FEW THINGS AND FELT EMPOWERED THAT I HAD THE ABILITY TO STAND UP FOR WHAT I BELIEVE AND PERHAPS MAKE A FEW POINTS THAT OTHERS HAVE MISSED.

I  FEEL  I  MADE A GREAT CASE AND I DID MY HOMEWORK . I ACTUALLY HAVE TO GIVE CWA SOME CREDIT CUZ I BELIEVE MY TRAINING AS A UNION  REP  PAID OFF -- IT REALLY HELPED ME ORGANIZE MY THOUGHTS AND AGRUMENTS.             THANKS CWA 

WELL  ITS ONLY 330 IN THE MORNING SO I GUESS I BETTER PUT THIS EXERPT TO BED AND WILL WRITE AGAIN SOON                        HAPPY NEW YEAR