ROSE PARADE FLOAT

FOR THE PAST FEW DAYS DAKOTA AND I TRAVELED TO DUARTE  TO WORK ON A ROSE PARADE FLOAT FROM OUR CITY. I HAVE BEEN SEARCHING FOR MORE ACTIVITIES WHERE DAKOTA CAN BE A PART OF THE COMMUNITY AND THIS HAS TURNED OUT TO BE A GREAT EXPERIENCE .

ALTHOUGH THE FIRST DAY THERE WERE ADJUSTMENTS ESPECIALLY TO THE NOISE LEVELS AND THE CONFUSION  OF EVERY BODY RUSHING AROUND WHEN THE SECOND DAY CAME DAKOTA WAS ANXIOUS TO GET DRESSED AND GET BACK TO THE FLOAT SITE . WE WORKED ON MOST OF THE PINE AND DEW-BERRY PLANT  THAT SURROUNDS THE BOTTOM OF THE FLOAT. DAKOTA WAS STILL A BIT RELUCTANT TO ACTUALLY DO A WHOLE LOT BUT I COULD SEE THAT THIS IS AN ACTIVITY THAT WILL BECOME A TRADITION AND SOMETHING HE CAN GO INTO AS HE GETS MORE COMFORTABLE WITH THE SURROUNDINGS.

I AM SO PROUD OF HIM AND HAPPY TO HAVE FOUND ANOTHER COMMUNITY ACTIVITY THAT GIVES HIM THE OPPORTUNITY  TO BE WITH "TYPICAL " KIDS AND ADULTS!

ITS IN THE TOILET!!!!!!!!!!!!!!!!!!!!!

TODAY WAS A LESSON . DAK WAS GETTING READY FOR A SHOWER-- AS THE YEARS HAVE PROGRESSED WE HAVE FINE TUNED AND TWEAKED THE PROCESS FROM DEPOSITING HIS UNDERCLOTHES IN THE LAUNDRY BASKET TO TAKING OFF HIS WATCH  OR LEARNING HOW TO PREPARE THE WATER BY TESTING THE TEMPERATURE  ALL BABY STEPS FOR SOMEONE WHO JUST DOESN'T HAVE THE "CONCEPT" OF DOING THIS BY THEMSELVES---ITS ALL TRAINABLE BUT A MUCH SLOWER PROCESS THAN WITH A TYPICALLY DEVELOPING CHILD---- OK

SO WHILE IN THE SHOWER DAK DECIDED THAT HE NEEDED TO EXIT THE SHOWER AND USE THE TOILET --IT SEEMS TO RELAX HIM AND OFTEN TIMES IS A GREAT WAY TO ACHIEVE THE 'DESIRED OUTCOME' {EXCUSE THE PUN}  HE REQUIRES PRIVACY AS MOST OF US DO  BUT AFTER HE IS FINISHED HE BECKONS ME TO HELP WITH CLEAN UP -- ABOUT THE  TIME THAT THE TOILET FLUSHED I HEARD A RACKET AND IT SOUNDED AS IF HE HAD KNOCKED SOMETHING OFF THE SHELF AND BROKE IT. A FEW SECONDS LATER HE CAME OUT OF THE BATHROOM  WITH THE MOST PECULIAR  LOOK ON HIS FACE AND HE SAID --  I FLUSHED IT--- I MADE A MISTAKE--- AND I SAID  WHAT DID YOU FLUSH ?? AND HE SAID  MY WATCH --ITS GONE   I FLUSHED IT!

I SAID NO YOU DIDNT AND HE SAID--"YEP" AND HE GRABBED HIS WRIST. I JUST COULDN'T BELIEVE IT-- I LOOKED AROUND AND IT WAS NO WHERE TO BE FOUND AND I SAID  DID IT FALL AFTER THE FLUSH OR DID YOU  DROP IT AND THEN FLUSH-- I COULD SEE THAT HE WAS STRUGGLING WITH THE QUESTIONED BUT AFTER A FEW MINUTES I REALIZED THAT WHAT HAD HAPPENED WAS THAT AS HE REACHED FOR THE HANDLE TO FLUSH HE SIMULTANEOUS HIT THE SHELF HIS WATCH WAS ON AND IT FELL AS HE FLUSHED.

THERE IS REASON I WRITE ABOUT THIS: HE HAS BEEN ATTACHED TO THIS WATCH SO CLOSELY THAT THE LIGHT WENT OUT AND THE BAND HAS ALMOST COMPLETELY WORN OUT BUT HE HAS REFUSED TO ALLOW ANYONE TO TAKE IT OFF OF HIM OR LET ME MAIL IT IN  TO REPAIR THE LIGHT. TO SEE HIM HANDLE LOOSING THIS WATCH THE WAY HE DID WAS A HUGE  VICTORY. AND THE LOOK ON HIS FACE WAS PRICELESS.

WE DID SUFFER SOME RESIDULE BEHAVIOR BUT MINOR AT BEST--             I MADE SURE THAT I DIDN'T REACT NEGATIVELY WHEN HE TOLD ME  ABOUT THE WATCH ;ONE THING I HAVE LEARNED USUALLY THE HARD WAY IS THAT THE LESS REACTION THE BETTER THE BEHAVIOR ON DAKOTA'S PART. TRYING NOT TO LET HIM FEEL THAT HE DID SOMETHING WRONG AND THAT IT WAS JUST AN ACCIDENT SOMETHING BEYOND HIS CONTROL. HOWEVER ABOUT AN HOUR LATER HE GOT ESCALATED AND STARTED GRABBING AT MOM  TRYING TO GET ME UPSET OR MAD WHEN HE COULDN'T GET A REACTION FROM ME  THEN HE THREATENED TO HIT HIMSELF. INSTEAD OF DISCUSSING THE INCIDENT WITH HIM I TRIED TO RE-DIRECT HIM ON TO OTHER SUBJECTS OR THINGS THAT WERE HAPPENING AT THE TIME LIKE  ASKING IF HE HAD GONE TO CHECK THE MAIL OR ABOUT A TV SHOW THAT COULD BE AIRING AT THAT MOMENT-- ANYTHING TO INTERRUPT AND REDIRECT ,

ALL IN ALL THE WATCH IS IN THE TOILET AND ON ITS WAY TO THE "RIVERS OF AMERICA" CANT CRY OVER SPILLED MILK SO WE HAVE TO GET ON WITH LIFE-- I OFFERED HIM ANOTHER WATCH I HAD BOUGHT HIM  AND HE  RECOILED AND REFUSED -- AFTER A WHILE I WAS ABLE TO CONVINCE HIM TO PUT IT ON  BUT SHORTLY THERE AFTER HE STARTED HAVING STUPID BEHAVIOR  AND THEN SIGNALED ME  THAT HE WANTED TO TAKE OFF THE WATCH SO I DECIDED WHY FI IT??? AFTER I WRITE THIS I SUPPOSE I WILL BE ON THE  WEB SITE TRYING TO BUY ANOTHER WATCH TO REPLACE IT!!!

NOT GONNA GO DOWN TO THE LOCAL SEWER PROCESSING PLANT AND PUT A CLAIM IN!!  ITS JUST IN THE TOILET!  

Preferred Provider VS. Parental Vouchered Respite

I am on the respite kick again-- I have only been on the "Preferred Provider" respite for a short time and already I am unhappy-- I know thats nothing unusual but I think I have legitimate concerns-- and Once again I think that Inland Regional Center has made a decision that benefits them tand the agancies that make a profit VS benefiting the individuals they serve and the families that support these individuals--

Below I have posted on a couple of web-groups for autism to see if I get any feed back--I am just so pissed off that there are people and agencies  who are, like wolves that prey on sheep,   out there  making monetary gains over and above what is rightfully theirs utilizing our disabled kids for the EXTRA bucks!

I'm sending this out with hope to hear back from any of you who might be having the same issues with Inland Regional Center and Respite services.
As most of you know they [IRC] has recently pushed for perferred provider respite vs. parental vouchered respite managing to get nost of the 4000+ clients converted. One of my biggest problems with this is that IRC claimed that the transition would be "seamless", all we have to do is submit the persons name and there would be little different with the exception that the agency would be providing the paycheck to our worker.

I have  only been with Accredited Home Health Care for about 2+ months and already I have noticed more than one problem--
The main one is that the Respite workers are only getting 8.50 per hour {and the agencies got a 3% raise in July}  As a parent vouchered respite worker the caregiver was getting 8.83 as of July.
So heres my biggest bitch this agency is sucking 33 cents for every hour from every client they have for themselves-- meaning if you have 30 hours x 33cents per hour = $9.90 x 12 months = $118.80 for year
times however many clients they have from all the regional centers
and once again a "for profit agancy " makes money on our kids disability instead of givng that to the worker who cares for our kids??? what is that all about? Some would argur thats what the get for issuing a check but come on thats all they are doing.
They didnt have to hire or process the worker thay dont have to track the hours  all they do is issue a paycheck--
Once again IRC makes a unilateral decision to "force" parents to conform to regulations by eliminating parental vouchered respite so an agaency can profit -- SORRY i will get off my soap box

What I would like to know is has anyone else noticed that the pay scale is less with these "preferred providers "
Its difficult to search out and find people to care for our kids when we cant even offer them the same as they were getting before.
Perhaps many of you dont care or dont think its an issue however I am hoping some of you can shed some light on if you too have experienced this pay-roll back and if there are agencies actually honoring the 8.83 rate.

Thanks for letting me vent
Cindy
I did mention  some other issues with this agency but will hold my tongue for now to see if i can iron those problems out.

 

 

NEWSWEEK ARTICLE

Newsweek has a lead article on autism when they grow up

I will include the link to the whole article on the bottom but I wanted to post a few exerpts that hit home and sound as if I helped write the article. They are things I have been talking about to anyone who will listen for years

so here ya go-- if you are really interested the link will be at the bottom of this post:

What Happens When They Grow Up Teenagers and young adults are the emerging face of autism as the disorder continues to challenge science and unite determined families.

Eric Ogden for Newsweek Christopher Jorwic, 17: He doesn't speak, despite therapy since childhood. His parents, who've been active in the autism movement for years, call him their 'gentle giant.'

By Barbara Kantrowitz and Julie Scelfo

Newsweek

Nov. 27, 2006 issue - Chicken and potatoes. Chicken and potatoes. Danny Boronat wants chicken and potatoes. He asks for it once, twice ... 10 times. In the kitchen of the family's suburban New Jersey home, Danny's mother, Loretta, chops garlic for spaghetti sauce. No chicken and potatoes, she tells Danny. We're having spaghetti. But Danny wants chicken and potatoes. Chicken and potatoes. His 12-year-oldsister, Rosalinda, wanders in to remind her mother about upcoming basketball tryouts. His brother Alex, 22, grabs some tortilla chips and then leaves to check scores on ESPN. His other brother Matthew, 17, talks about an upcoming gig with his band. Danny seems not to notice any of this. "Mom," he asks in a monotone, "why can't we have chicken and potatoes?" If Danny were a toddler, his behavior would be nothing unusual. But Danny Boronat is 20 years old. "That's really what life with autism is like," says Loretta. "I have to keep laughing. Otherwise, I would cry."

Autism strikes in childhood, but as thousands of families like the Boronats have learned—and thousands more are destined to learn—autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens next?

As daunting as that question may be, it's just the latest in the endless chain of challenges that is life for the dedicated parents of children with autism. Twenty years ago, they banded together—largely out of desperation—to raise awareness of a once rarely diagnosed, often overlooked disease. They are united by the frustration of dealing with a condition that has no known cause and no cure. They have lobbied passionately to get better education for their kids and more money for research into autism, a neurological disorder characterized by language problems, repetitive behaviors and difficulty with social interaction. At the same time, more sophisticated epidemiology has revealed the true magnitude of the problem. Autism is now estimated to affect from one in 500 to one in 166 children—or as many as 500,000 Americans under 21, most male. That includes individuals with a wide range of abilities—from socially awkward math whizzes to teens who aren't toilet trained—but who all fit on what scientists now consider a spectrum of autism disorders.

Some kids have made dramatic progress after intensive physical and behavioral therapy; many others still struggle with basic activities. Often, when lower-functioning young people reach 18, their parents will establish legal guardianship to protect them. But no matter what level they've reached, many will need help for the rest of their lives. Most government-sponsored educational and therapeutic servicesstop at the age of 21, and there are few residential facilities and work programs geared to the needs of adults with autism. "Once they lose the education entitlement and become adults, it's like they fall off the face of the earth" as far as government services are concerned, says Lee Grossman, president and CEO of the Autism Society of America, a major national-advocacy group.

According to the Harvard School of Public Health, it can cost about $3.2 million to care for a person with autism over a lifetime. Caring for all persons with autism costs an estimated $35 billion per year, the same study says. Families with limited financial resources are particularly hard hit. Other chronic diseases like diabetes are covered by insurance. But parents of youngsters with autism "have to navigate a maze and, if they find providers, then they have to figure out how to pay for it," says Singer. Grossman's early wish for the Combating Autism Act was that it would address the dire needs of autistic adults, and he drafted 30 pages of service-related issues.

The article is quite expansive and concentrates on the bills that are currently being considered for passage in Congress but the meat of the article to me are the realities  of livng anf growing with autism -- Not just for the individual but also for the families

The most important element that I want to highlight is  awareness and edusction of those who dont know about autism.These kids deserve to be treated with dignity and tolerance in their communities and given vocational opportunities   that suit thier strengths not just busy work  hidden away in a "workshop for challenged people.

Heres the link :

http://www.msnbc.msn.com/id/15792805/site/newsweek/

LETTER FROM A MOM

I recieved a leter from a mom asking me a great question about social interactrion so i thought i would add it to my journal since it may be something we think about but maybe something we wouldnt think to ask someone about:

 Hi Cindy, I always come to you for words of wisdom.... and I ask again.  How do you now and how did you (when Dakota was young, like David (5)) deal with going to functions/parties, accepting invitations and attending social events??? I sometimes feel I stress David out when I try to fit him into a social world he just doesn't feel comfortable with yet I know I should take him places but it can be hard on me. (Coping with all the stares, non acceptance yet trying to get typical sibling involved) YOU know what I mean???  I always appreciate your insight. I am just trying to manage our way on this autism journey.

Many Thanks and I hope you and yours are well.

Karen

And this is what I wrote back-- certainly not the authority but I hope it may help someone:

 

DEAR KAREN

I AM SO SORRY I HAVE DRUG MY HEELS IN RESPONDING TO YOUR EMAIL

I GET SO WRAPPED UP IN THE DAY TO DAY "BEING WITH DAKOTA " THAT I SET ASIDE SITTING IN FRONT OF THE "MACHINE " AND WRITING WHEN I CAN BE WITH DAKOTA-- I THAT ASPECT I AM LUCKY THAT I DONT HAVE OTHER FAMILY OR A SPOUSE TO PLACATE BY THE SAME TOKEN IT CAN BE EVER PRESENT AND CUMBERSOME AT TIMES

 

YOU KAREN IT GETS BACK TO SIMPLICITY AS FAR AS I AM CONCERNED WHEN IT COMES TO INVOLVING DAKOTA SOCIALLY  OR MYSELF FOR THAT MATTER

I HAVE BECOME SOME WHAT OF A RECLUSE AND I EVEN HAVE GONE SO FAR AS TO BLAME SOME OF MY WEIGHT AND MY UNTIDY HOUSE AS EXCUSES I USE TO NOT ENGAGE WITH OTHER PEOPLE--- THATS A LITTLE SELF-ANALYTICAL BUT I THINK MORE TRUE THAN NOT--- BUT I OFFER NO  REMORSE FOR THIS BEHAVIOR

AS I HAVE COME TO A PLACE OVER 20 TO KNOW THAT MY GUY IS DIFFERENT AND MOST OF THE TIME PEOPLE WILL NOT; CANNOT OR DONT HAVE THE SENSE TO UNDERSTAND AND ACCEPT OR AT LEAST TOLERATE AUTISM. ITS NOT MY SON ITS THE TERRIBLE DISORDER HE HAS -- SO AS USUAL I  USE  MY  GUT

IF I THINK HE WILL HAVE A TIME DEALING WITH A SITUATION OR I AM GOING TO BE STRESSED OUT TAKING HIM SOMEWHERE I SIMPLY  DONT GO

I EITHER  TRY TO CONCOCT AN ALTERNATIVE ACTIVITY  OR ALTER THE EXSISTING ACTIVITY TO SUIT DAKOTA---

FOR EXAMPLE IF IM KNOW RIDING ON A US WITH OTHER WILL BE DIFFICULT OR HE WOULDNT BE MONITORED CORRECTLY WITH A GROUP GOING SOMEWHERE  I WILL DRIVE DAKOTA TO THE  FUNCTION AND EVEN STAY TO OBSERVE AND INTERVEIN WHEN I THINK HE MIGHT BE HAVING A PROBLEM-- IF THE PEOPL DONT LIKE IT TOO BAD ITS A WAY FOR DAKOTA TO GET THE EXPERIENCE AND IF THEY PROTEST THEN MY SON DOESNT NEED TO BE WITH THOSE PEOPLE-- AS SMALL AS DAVID IS YOU WILL RUN INTO LOADS OF PEOPLE WHO WILL TELL YOU TO NOT PICK HIM UP ; TO NOT COTTLE HIM TO NOT TREAT HIM DIFFERENT BUT HE IS DIFFERENT AND THOSE SAME PEOPLE WILL TREAT YOUR SON DIFFERENT NOT NECESSARILY IN A GOOD WAY SO WHY SHOULDNT YOU TREAT YOUR SON IN A POSTIVE WAY???  MAKE ALTERATIONS AND REVISIONS TO ACCOMODATE HIS AUTISM?

 

ON THING YOU HAVE TO KEEP CONSTANT IN YOUR HEAD IS THAT WE DONT LIVE IN AN "OZZIE AND HARRIET" WORLD AND ALL PEOPLE HAVE "WARTS" OUR KIDS JUST HAVE A TYPE THAT IS VERY DIFFICULT FOR MOST PEOPLE TO TOLERATE-- FOR GET THE STARES FOR GET THE ARMCHAIR COACHING FROM THOSE WHO DONT KNOW ANY BETTER

ITS HARD TO BE PRO ACTIVE SOMETIMES BUT YOU ARE THE MOMMA BEAR PROTECTING YOUR CUB SO DONT EVER APOLOGIZE FOR ANYTHING YOU DO FOR YOUR DAVID!

 

I WANT YOU TO KNOW THAT NOW THAT I HAVE 20 YEARS UNDER MY BELT IT DOES SEEM TO GET BETTER AND THEY SEEM TO TOLERATE AND DEVELOP THE ABILITY TO BLEND AND ACCEPT MORE --AT LEAST IN DAKOTAS CASE

DONT EVER FEEL BAD IF YOU OPT TO STAY HOME  OR NOT ACCEPT AN INVITATION BECAUSE IT DOESNT HAVE A GOOD FIT FOR DAVID-- YOU NEED TO BE AS STRESS FREE AS POSSIBLE TO BE A GOOD MOM AND MAKING DAVID COMFORTABLE IS THE BEST WAY TO DEFEAT HIS AUTISM--- ITS OK TO LET HIM COME HOME AND PUT ON "HAPPY CLOTHES" {FOR DAKOTA ITS HIS UNDERWEAR!!!!} AND JUST CHILL OUT WATCHING HIS FAVORITE TV SHOW OR PLAYING HIS FAVORTIE GAME-- EVEN STEMMING FOR A SHORT WHILE IS A FORM OF RELAXATION AND HE HAS SPENT ALL DAY COPING WITH MAKING HIS LITTLE BODY GO THRU THE HORROR OF THE SOCIAL EXPERIEMENT  CALLED SCHOOL -- WHEN WE WORK ALL DAY WE WANT TO COME HOME AND RELAX WHY DONT OUR KIDS DESERVE THE SAME??

 

SO TO GET BACK TO THE BASIC QUESTION-- DEVELOP A DIALOG WITH DAVID  TELL HIM YOU WANT TO TAKE HIM SOMEWHERE  TELL HIM WHAT TO EXPECT AND WHERE HE WILL GO AND WHAT WILL BE HAPPENING AND WATCH HIS REACTION --IF HE PROTESTS GIVE IT A REST AND RE-VISIT IT LATER IF YOU STILL GET RESISTANCE  WHAT IS THE PURPOSE OF MAKING HIM GO SOMEWHERE WHERE EITHER HE WILL HAVE A MELTDOWN OR YOU WILL WANT TO SHOOT YOURSELF OR SOMEONE ELSE JUST TO PARTICIPATE IN SOMETHING??

 

WHILE DAVID IS SMALL HE CAN STILL BLEND WITH LITTLER KIDS BUT AS THE YEARS GO BY  HE WILL GET BIGGER AND LESS ABLE TO INTERACT WITH SMALLER CHILDREN ITS REALLY IMPORTANT TO CONTINUE TO SEEK OUT AGE APPROPRIATE ACTIVITIES FOR DAVID EVEN IF HE IS DOING SOMETHING BY HIMSELF--- FOR INSTANCE MINATURE GOLF  SOMETHING HE CAN DO BY HIMSELF WITH MOM WHILE OTHER KIDS COULD BE PLAYING A HOLE A HEAD OR BEHIND UNTIL HE CAN TOLERATE THE KIDS BEING WITH HIM-- JUST AN EXAMPLE  I TRY TO ISOLATE DAKOTA FIRST WITH A TASK AND THEN INTRODUCE OTHERS --ALSO YOU HAVE TO EDUCATE EVEN THE KIDS ABOUT WHAT TO EXPECT FROM DAVID SO THEY DONT REACT IMPROPERLY

 

WELL I GUESS I HAVE GONE ON LONG ENUF

TI THINK I WILL PUT THIS IN MY JOURNAL TOO

ITS A GREAT TOPIC AND MAY NOT BE SOMETHING MANY WOULD ASK ABOUT

I HOPE I HELPED YOU  I HOPE THAT I SAID SOMETHING THAT MIGHT AIDE  YOU IN HELPING DAVID

PLEASE FEEL FREE TO WRITE WHEN EVER YOU CAN

CINDY 

OBSERVATIONS AND OPINIONS

SOMETHING THAT HAS BEEN BOTHERING ME FOR A WHILE AND I JUST FEEL LIKE I HAVE TO  WRITE ABOUT IT

I DONT KNOW IF IT IS HAVING THE YEARS UNDER MY BELT OR IF IT IS THE AGE PROGRESION FO DAKOTA BUT  IT DOES SEEM AS IF THE AUTISM HAS BECOME MORE MANAGEABLE OR TOLERABLE

MAYBE IT IS JUST BECAUSE  AFTER YOU LIVE THROUGH EACH EXPERIENCE IT IS ONE STEP FURTHER DOWN THE ROAD TO UNDERSTANDING  AND ACCEPTING  THE AUTISM OR THE BEHAVIORS --MAYBE  IT IS BECAUSE YOU HAVE TRAVELED THRU THE MORNING FOR THE "TYPICAL CHILD AND ARE ARRIVING AT THE OTHERSIDE OR MAYBE BECAUSE YOU HAVE COLLECTED MORE TOOLS FOR YOU TO HANDLE AND DEAL WITH THE AUTISM   NEVER-THE-LESS  IT DOES SEEM TO GET BETTER/EASIER--

THATS NOT TO SAY EVERYDAY IS STILL A CHALLENGE AND NOT LIKE LIVING WITH A "TYPICAL" CHILD BUT MORE TO SAY THAT THE ABILITY TO UNDERSTAND OR DISECT A BEHAVIOR  CONTINUES TO BE COME  LESS  OF AN  ISSUE AND MORE OF A CHALLENGE FOR ME TO FIND A SOLUTION

ALL THAT BEING SAID  MY FRUSTRATION IS WITH THE WEB BASED GROUPS  I SUBSCRIBE TO-- THESE ARE SUPPORT GROUPS  COMPRISED MOSTLY OF PARENTS WITH CHILDREN THAT HAVE AUTISM--WHILE THE MAJORITY HAVE LITTLER CHILDREN  AND ARE ON A DIFFERENT  SPOT ON THE  SPECTRUM    IT SEEMS AS IF THERE IS A CONSTANT LAMENT AMONG THESE PARENTS TO "FIX" THE AUTISM.

AS I HAVE SAID OVER AND OVER  I DONT FAULT THEM FOR WANTING THE BEST FOR THEIR CHILDREN AND  NEVER GIVING UP ON THE  POSSIBILITY OF "DEFEATING " THIS MONSTER ; I HAVE ARRIVED AT A PLACE WHERE  I WOULD CHEER AND RAISE MY HANDS TO HEAVEN AND THANK GOD IF A "CURE" WAS FOUND TOMMORROW  BUT THE COLD REALITY IS THAT THOSE WHO ALREADY HAVE AUTISM PROBABLY WILL BE  PLAGUED WITH AUTISM FOR THE REST OF THEIR LIVES  AND OUR LIVES TOO!  SO WE NEED TO EMBRACE THAT  AND DO EVERYTHING WE CAN TO MAKE LIFE  THE BEST WE CAN FOR OUR KIDS  JUST THE WAY THEY ARE--- THATS NOT TO SAY WE SHOULD GIVE UP OR NOT TRY NEW THINGS BUT  TO BE SO WRAPPED UP IN  EVERY MIMUTE AND EVERY HOUR OF DOING THIS CHEALATION OR THAT DETOX --THIS BEHAVIOR ANALYSIS OR THAT  INTERVENTION  WE LOOSE SIGHT OF THE FACT THAT THE AUTISM IS WHO OUT KIDS ARE AND THEY NEED TO HAVE NORMALCY  TOO.  I READ ABOUT MEGA VITAMINS AND GFCF DIETS AND HYPERBARIC CHAMBERS AND  VISION THERAPY AND AUDIO TRAINING  ENYMES --- YIKES IT MAKES ME WANT TO SCREAM SOMETIMES--- EVERY DAY FILLED WITH APPOINTMENT AFTER APPOINTMENT WHEN DOES THE CHILD HAVE THE ABILITY TO BE A KID??? WE LIKE TO COME HOME AND TAKE OUR CLOTHES OFF AND  EAT SOME COMFORT FOOD AND RELAX AFTER  A HARD DAY  BUT HERE WE ARE AS DEDICATED PARENTS SPENDING EXHAUSTING HOUR AFTER HOUR MAKING SURE WE HAVENT MISSED OUT ON SOME MIRACLE CURE THAT WORKED FOR THIS KID OR THAT KID--- WHAT HAPPENED TO THE QUALITY OF LIFE?? I REALIZE WE ALL GO THRU THE "WHAT IF" STAGE BUT I GUESS I HAVE ARRIVED AT A POINT WHERE I CAN HONESTLY SAY THAT  IT IS MORE IMPORTANT FOR DAKOTA TO DO WHAT HE WANTS  AND TO LIVE HIS WAY AND LIKE WHAT HE LIKES  --HOW CAN HE DEFINE HIS PERSONALITY  IF I AM  DRIVING  EVERY WAKING MOMENT?

I DONT FAULT ANY PARENT FOR DOING EVERYTHING THEY CAN I JUST THINK THAT  SOMETIMES ITS THE OLD ADAGE OF "CANT SEE THE FOREST FOR THE TREES'   how can our kids find out who they are if we are constantly trying to  mold them in to being something OTHER THAN AUTISTIC

I GUESS I JUST HAVE TO LET OF SOME STEAM AND  CERTAINLY NOT RAG ON ANYONE ELSE JUST TRY TO PRESENT A DIFFERENT PERSPECTIVE FROM ONE WHO HAS BEEN TRAVELING DOWN THE ROAD FOR QUITE A LONG TIME AND  HAS  ARRIVED  AT A  "LOOK OUT POINT" THAT SEEMS TO BE  BEAUTIFUL AND INVITING AND  A BIT OFF THE BEATEN PATH.  PERHAPS NOT ONE THAT MANY ARE READY FOR BUT CERTAINLY AN OPTION. 

"SHOW ME THE MONEY"

SO MUCH FOR BEING TIMELY--HEE HEE

SEVERAL WEEKS AGO  WE TOOK DAKOTA TO A TAPING OF A NEW GAME SHOW

"SHOW ME THE MONEY" HOSTED BY WILLIAM SHATNER -- WE WERE FORTUNATE ENUF TO SEE THE TAPING FOR THE VERY FIRST EPISODE WHICH WILL AIR ON    ABC ON TUESDAY  NOVEMBER 14TH AS A SNEEK PREVIEW-- AND I THINK THEY WILL RE-AIR THE SAME EPISODE AGAIN ON WEDNESDAY NOVEMBER  23RD IN ITS REGULAR TIME SLOT------

OK THIS IS NOT A PLUG FOR THE SHOW BUT A MOTHER WHO WANTS TO BRAG ABOUT HOW GREAT DAKOTA DID AT THE TAPING-- WE WENT TO THE STUDIO AND HAD TO PARK QUITE A DISTANCE AWAY AND THE FIRST FEAT WAS THAT MY GUY SUCKED IT UP AND WALKED A LONG WAY JUST TO GET TO THE STUDIO-- THAT MAY SEEM LIKE NO BIG DEAL BUT HE IS STILL UNDERGOING SURGERY ON HIS FOOT FROM HIS BREAK OVER A YEAR AGO SO IT WAS REALLY EMPOWERING TO SEE HIM DIG IN AND HANDLE THE TREK WE HAD TO MAKE JUST TO GET THERE-- THEN AFTER HAVING TO SIT OUTSIDE WHILE THEY PREPARE YOU TO ENTER FOR ABOUT AN HOUR--FILLED WITH QUESTIONAIRES AND RELEASES PLUS VERBAL DIRECTIONS FOR STUDIO ETTIQUETTE WE FINALLY GET INTO THE STUDIO FOR ANOTHER 4 TO 5 HOURS OF TAPING--- THIS GUY WAS STELLAR  HE LISTENED AND TOOK DIRECTION FROM THE STAGE MANAGER-- CHEERED, GROANED, CLAPPED , STOOD UP ALL ON CUE    I COULD NOT HAVE ASKED FOR BETTER BEHAVIOR--- WHAT A TRIUMPH I AM SO PROUD OF HIM

SUPPOSEDLY THERE WILL BE A LOT OF AUDIENCE SHOTS SO WE ARE HOPING TO SEE OURSELVES ON THE  SHOW --TAKE A PEEK AND SEE IF YOU SEE US!!!

THE BIG BIG BONUS IS THAT WE DISCOVERED THAT THESE SHOWS ALSO USE "SEAT FILLERS" FOR  EMPTY SEATS OR PEOPLE WHO LEAVE EARLY OR CANT BE THERE FOR THE WHOLE TAPING AND YES  THEY PAY PEOPLE TO DO THIS--- WELL I THINK WE MAY HAVE FOUND A POSSIBLE VOCATION FOR DAKOTA                                 I SPOKE TO ONE OF THE CAST AND THEY TOLD ME ABOUT THE CASTING GROUP AND HOW TO GO ABOUT GETTING INFORMATION  AND SIGNING UP . DAKOTA HAS  DEVELOPED QUITE A LOVE FOR GAME SHOWS AND REALITY TV . HE  WATCHES GAME SHOW NETWORK  HOUR UPON HOUR WHEN HE HAS CABLE TV. IT IS HIS NICHE-- HE LEARNS FROM AND UNDERSTANDS  THE GAME SHOWS  BETTER THAN ANYONE I KNOW-- HE HAS HIS CHALLENGES BUT FOR SOME REASON THIS IS A MEDIUM THAT APPEALS TO HIM AND IS  TEACHING  ALOT-- I HAVE READ A COUPLE OF ARTICLES THAT RESEARCHERS HAVE DISCOVERED THAT "OUR KIDS" WITH AUTISM ARE DRAWN AND BENEFIT FROM TELEVISION AND COMPUTERS BECAUSE IT IS A "SAFE MEDIUM" IT IS A NON THREATENING  NON CONFRONTATIONAL SITUATION THAT IS CONSISTENTAND GIVES THE SAME ANSWER OR RESULT EVERYTIME. HUMANS DO NOT YIELD THE SAME RESULT--PEOPLE TEND TO BE NOT ONLY INCONSISTENT BUT WILL ALLOW EMOTION, GESTERING OR  VOICE INTONATION TO CHANGE EVEN IF THEY ARE DELIVERING THE SAME ANSWER EVERYTIME

SO  THE GREAT NEWS IS THAT WE WENT TO A TAPING FOR RECREATION BUT MAY HAVE DISCOVERED AN AVENUE TO DEVELOP FOR DAKOTA TO CONSIDER FOR A JOB

NO MATTER WHAT I THINK WE WILL BE TRAVELING INTO  HOLLYWOOD MORE OFTEN

YOU NEVER KNOW   WHATS GONNA HAPPEN

BUT MOST IMPORTANTLY IS THE WONDERFUL BEHAVIOR--  SOMETHING I WASNT SURE I WOULD EVER SEE  - - - DAKOTA SHOWED ME  

The "F" bomb!!!!

Why do I put things off??? The queen procrastinator has entered the room-- Many thoughts have been coming to me that I want to post but I am not a typist so this does not come easy for me -- however I want to keep the journal going because it helps me so much -- And if it helps one person, one time, it is worth it ----

Well lets see;  I posted on the 16th and it must have been at least a week before that we had this "episode" in the Stater Bros Market  of all places.  You know the place that you go every week and all the people know you so even if you wait a week or two you will still run into someone who was there when "IT" happened!!!

In all fairness to Dakota it was not a routine day-- which consists of him going to school, I pick him up, we may run 1 errand something simple like a trip to the post office, his fast food run , and then home and in for the evening.Mom was in the car and I cant remember specifics that day but some how she and I had gotten into a "discussion" in the car where we butted heads--NO SURPRIZE there -- Dakota was in the back seat and of course absorbing it all.  I have noticed recently he has been much more attentive to the interactions of others especially those he lives with.

We had done several errands and I knew I was pushing my luck by adding one more stop but things had gome well up to that point so I figured it would be smooth sailing--right???WRONG                               We all had agreed it would be a quick trip --Mom went one way and Dakota and I another  about half way thru the store I saw Dakota start to get escalated 

He started to stem on grandma and her getting old and all of a sudden he decided he needed to find grandma-- at first I thought it was just a transition to go with her instead of me but by the time I got to the end of the aisle I saw him start to touch and pull on her face I tried to verbally prompt him back to the aisle I was at but i could tell a tidal wave was coming and I wasnt gonna be able to stop it so I went into DAMAGE CONTROL mode----

I heard his voice getting louder about her getting older- Mom uses a tone that is sometimes impatient or gruff and tells him to just forget it and lets keep shopping ---WRONG THING TO DO! he starts hollering at the top of his lungs "Just forget it"  "I said just forget it" As luck would have it the store was realatively empty but we were in the dairy section in the back of the store and of course just as the wave is about to hit 2 or 3 people come from nowhere and are getting in to close proximity. One was an older gruff looking man and I thought all I need is to have him decide hes gonna "teach Dakota a lesson". Dakota starts to grab at Grandma and continues to holler so I positioned myself between the 2 looked at Mom and said take my cart and we will be in the car--I put my arm around him and lowered my voice and started trying to soothe him by saying its ok Dakota lets just go to the car --come on --  ThankGod he complied and went willingly considering hes bigger than me now{before I could always just throw him over my shoulder and carry him out like a sack of potatoes} We were all the way down the aisle and about 20 to 30 feet from the door we came around the corner heading for the exit and thats when Dakota turned one last time and looked up the aisle and let it rip"F__ You"

Just at that moment my eyes meet with and older woman and what I think was her grand-daughter who was about 10 or 11--OH MY GOD the look! Well so you think you have had a bad day???I kept my eye on the prize which was to exit ASAP and we were out in a few more seconds-- we got to the car and he had an emotional breakdown --alligator tears and sobbing "why do you let grammy live with us??" Finally after about 10 minutes of words bouncing back and forth between us I realized from what he was saying that he was upset before we ever got out of the car and he was mad at his Grandma because he saw that I got upset at her -- she made me mad so he was mad at her--- it wasnt easy to arrive at that but I knew that was what had started it all

LESSON learned it wasnt his fault for his behavior once again-- I have to remember that although these kids often dont elude to understanding whats going on around them, they in fact soak in every thing and it affects them tremendously--I have to work on my behavior and demeanor every day because I never know when he will pick up on my attitude -- I owe it to him to give him every chance to have qualtiy of life and an enviroment where he can thrive. If I am yelling or not behaving appropriately it has a cause and effect on Dakota

Second LESSON is that you cannot let the circumstances embarrass you. We do not live in an OZZIE and HARRIET society --everything is not roses and sunshine and for the most part unless your childs behavior directly affects another person {like putting his hands on someone else}You DO NOT owe anyone an apology or explanation-- However sieze every opportunity to educate others  about autism

 

ttNew Postings to come!

hey  i have 2 or 3 things to post -- we had a meltdown in Stater Bros. and it was a dooooosey! and we went to the taping of a new TV show and Dak did so well -- It was a big accomplishment

Will be posting real soon!

On His Own

WOW I guess my guy is growing up --sometimes its hard for us to believe it and especially when you have kids like ours but you just have to celebrate every little  accomplishment like its a fricken graduation or something because you have times when you  seriously doubt that they will ever "get" some things!!!

As I previously told you Dakota had the tendom release last monday and the doctor recommended that he stay home and off of his foot as much s possible . The doctor did not want to "chance" that the toe would heal "curled up" and instructed both of us that if he got off the bed he absolutely must wear the special boot to keep his toe straight.

I struggled with him the first day remindingnhim to keep the boot on when he walked on the floor .

Wednesday I had gotten up before he did and came out to check email before the day was to start --- about an half an hour goes by and I hear him coming down the hallway and all I can do is freak cuz i am worried that he walking with out that boot!I jump up and turn around start to holler at him not to be walking withpout the boot to find my guy standing there in his underwear, t-shirt and the boot! HOORAY !!!

I cant tell you how awesome that felt to know that he woke up and had the presence of mind to put the boot on before coming out from his bedroom

Good Job ! Yipeeeeeee

Another Surgery

Again we find ourselves heading to the clinic for another "out patient proceedure" since Dakota broke his leg 18 months ago. And again we have to find someway to make this as easy and painless, not to mention without a meltdown, as possible.

This was supposed to have been done in July but was re-scheduled for many reasons . After over a year of physical therapy , many assessments, proceedures and evaluations; a tendon release was what the podiatrist ordered . This is another "hail Mary" if you will to get Dakota's "leg" back. For months now he has been telling me he wants to have the surgery cuz he wants his toes to be flat and in his own way has indicated on many occassions that the toe bugged him  BUT of course when the day came and we were actually walking into the clinic WELL the anxiety  started rearing its ugly head.

Being a Mom who had a few tricks under her belt, I came equipped to slay the "Big Behavior Dragon" with a sword that could cut down the mightiest of evil- - The portable DVD player! When Dakota was much smaller and not quite ready for the hair salon I used to prepare a place at home with a tall- stool chair, lots of old shower curtains and a TV strategicaly placed right in front of the chair loaded and ready to go with the video choice of the day-- some how the  movie and I managed to succeed to get the job done.  When these "proceedures"  came around and my son was becoming big enuf to no longer physically restrain or carry out I had to devise a new way to handle getting done what needed to get done!HENCE the portable DVD player equipped with a rechargeable battery pack, ear plugs if necessary and of course the most current or most preferred video in the house!

We checked in and went to the waiting area where I started the video giving him time to get involved with the story.  When it came time to go to the "spooky " nurse preping area and the O.R. he was already busy with the story-- vitals and bloodpressure taken , gowned up and we are off to the "room". Absolutely no hesitation entering the room and I continue to direct him to whats happening in his movie so he wont be distracted by whats actually going to happen. OOOpppssss theres a flinch when they put the "cold stuff" on him but once again I re-direct; the doctor administers the local and by the time hes saying "Mommy they are hurtung me" hes numb and about 10 more minutes and the doctor is done!

All I can say is that for us the Portable DVD player is a GODsend. You may have to find a "different carrot" for your child  a interactive book,a cd or radio ,an electronic toy of some kind or maybe a portable playstation but I know that someone should be able to benefit from this---and the payoff is walking out of the clinic having the work get done and your child with out a meltdown!

One last tip that seems to really make my plan work is when I know one of these damn things are coming up I pay particular attention to the dvds that are being released near the same date as the surgery and I make sure that he knows that new DVD will be in that player for that proceedure--- cant tell you how many times I have been bailed out by Harry Potter , Spiderman and Shrek!   

September and School

Just a quick update -- school has started and I remain cautiously optomistic .

We have started with an old plan put forth with new surroundings and new people and I am pretty happy right now. Many of the things that I have struggled to incorporate into Dakotas schedule have been put in to place with a new team of  people.

For the moment he has already done more things I have wanted for him in this 2 weeks than he had done in the passed 2 years so I am very happy in this moment. We  are incorporating a "safe haven" and special ed class with lots of communitiy activities { pretty neat new teacher, too}and some work experience with the opportunity for him to attend some reg ed classes -- just basic stuff like life science and basic english with the intent of pure socialization as the key-- no grading or other demands just an opportunity for him to be with other typical kids--

So time will tell but right now I am on cloud nine --- we will see how long it lasts! 

Celebration at Disneyland

What better  way to celebrat a birthday than at the Magic Kingdom?

We just spent almost 6 days at the Disneyland resort in a  beautiful room with a view to die for!!! The weather was great and we could see Downtown Disney, The Grand California Hotel, California Adventure, and all the Famous mountains of Disneyland--Space Mountain, Big Thunder Mountain, Splash Mountain and The Matterhorn plus we could watch the fireworks from the living room of the suite!

The best thing about the resort is there are many things you can do besides going to the parks. Not only do they have several pools but there are arcades, gift shops, waterfalls to explore, koi ponds, large park areas to just hang out and several eaterys including Goofys Kitchen {rather pricey,but} a must if you are celebrating a birthday. 

Things were a bit different this year as Dakota was still in a wheelchair last year and it made for a really  difficult time . Although he is still struggling through issues physically  he was at least up on his own 1 and 1/2 feet which helped mobility. Behavior  was stellar this year  only one real meltdown -- and that was in the pool because of his foot and inability to  be sure of himself  and the unfamliarity of  his surroundings he got very frustrated . I had also met a Mom who had an autistic son who was in the pool so we struck up a conversation which added to his frustration. I know it was  attention seeking behavior because he was afraid of his surroundings so when he started exhibiting the frustration i just said ok its time to go  and we headed back to the room and by the time we got back to the room he had managed to decompress--

For the most part we had a great time  but I have to share one incident I think could help someone else "read their child"--We had gone on Splash Mountain toward late afternoon it was still warm outside but we got horrendously wet even with a few hours of daylight left to dry  Dakotas shorts were a bit to heavy and never really dried. We continued a few more rides and towards dusk started back to the Hotel.  We  stopped for some reason for a minute and he grabbed his stomach on both sides and put out a big groan - - - - - I asked him what the matter was and he said "nothin" ;  we started out of the gates and stopped at Jamba Juice , I was speaking to thejuice girl when  I  turned around to find him slapping his foot on to the floor like a horse and throwing his knee to the outside -- just at that moment I realized that the shorts being wet were rubbing his legs and he was gaulded. We took a short cut thru The Grand  California Hotel and I got a valet to shuttle us over to our hotel-- My point is this when Dakota grabbed his stomach and groaned he was trying to tell me something then but I focused on the torso and kinda blew it off that his stomach couldnt be hurting.  I knew he wasnt hungry  so we pressed on until I finally caught the foot slapping in the juice store. Had I been just a little more  in tune I may have found his ailment sooner . I'm saying  that with these kids they dont always have all the tools to tell us when something is wrong .  You have to be a little bit of a mind reader and an extra special parent to take time to not react when they act out. Investigate to make sure they are not hurting or trying to tell us something is wrong-- {I have another story I will write about later  --The Sucker  } 

It is so incredibily easy to want your kid to conform to "typical " behavior that when they act out in public we tend to be quick to "squawsh" the behavior. Always Always Always take a few minutes to analyze whats going on and see if you can find another reason for the behavior-- I know its hard  and even I trip up after 19+ years   but our kids find different ways of telling us theres something wrong or theres something different. This has been a hard lesson for me . For the most part I think it is hard for every parent whether they have challenged kids or not  but our kids -- our autistic kids have different forms of communication and we have to give them the benefit of doubt when they are trying to tell us something -- One thing I believe 100% is that not one "behavior " happens for no reason ; we may never know all of the reasons but at least let your child use what ever means or tools he has to tell you something is wrong  - -  Spare an extra moment or two to read the cues

In the long run you will be a better parent and  in our case I have seen and improving child-- muchless acting out and more meaningful  behavior as well as the ability to self monitor  when a behavior does errupt!

As for Disneyland  a great time always  and once again a learning experience!

FORWARDED EMAIL

I HAVE RECIEVE A COUPLE OF EMAILS LATELY THAT WERE RATHER INSPIRATIONAL AND ALSO REVEALING WHEN IT COME TO EXPLAINING WHAT APRENT LIKE US GO THRU AND FEEL

SO  I HAVE DECIDED TO POST THEM HERE BECAUSE YOU NEVER KNOW WHEN SOMEONE MAY BENEFIT FROM THE WORDS OF ANOTHER

THE FIRST ON IS MORE OF A JOKE ABOUT PERSISTANCE AND NOT ONLY DOES IT EXPLAIN THE DRIOVE BEHIND PARENTS OF KIDS WITH SPECIAL NEEDS  IT CAN ALSO APPLY TO THE   "MAKE UP" OF OUR KIDS SINCE  PERSISTANCE AND PERSEVERATION HAVE A SIMILAR LANGUAGE ROOT:

In Jerusalem , a female CNN journalist heard about a very old Jewish man
who had been going to the Wailing Wall to pray, twice a day, every day,
for a long, long time.

So she went to the Wailing Wall to check it out, and there he was.

She watched him pray and after about 45 minutes, when he turned to
leave, she approached him for an interview.

"I'm Rebecca Smith from CNN. Sir, how long have you been coming to the
Wall and praying?"

"For about 60 years".

"Sixty years! That's amazing! What do you pray for?"

"I pray for peace between the Christians, Jews and the Muslims. I pray
for all the hatred to stop and I pray for all our children to grow up in
safety and friendship."

"Sir, how do you feel after doing this for 60 years?"

"Like I'm talking to a f**kin' wall."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THE NEXT 2 STORIES ARE ABOUT KIDS THAT ARE CHALLENGED AND HOW THEY LIVE THEIR LIVES FROMSUCH A "PURE" STANDPOINT:

Some people understand life better, and they call some of these people "retarded"...

  At the Seattle Special Olympics, nine contestants, all physically or mentally disabled,
  assembled at the starting line for the 100-yard dash.

  At the gun, they all started out, not exactly in a dash, but with a relish to run the race
  to the finish and win. All, that is, except one little boy who stumbled on the asphalt,
  tumbled over a couple of times, and began to cry.
  The other eight heard the boy cry. They slowed down and looked back. Then they all
  turned around and went back... every one of them. One girl with Down's Syndrome bent
  down and kissed him and said, "This will make it better."
  Then all nine linked arms and walked together to the finish line.
  Everyone in the stadium stood. The cheering went on for several minutes. People who
  were there are still telling the story.

  Why?

  Because deep down we know this one thing: What matters in this life is more than
  winning for ourselves.  What matters in this life is helping others win, even if it means
  slowing down and changing our course.
  If you pass this on, we may be able to change our hearts as well as someone else's.
  "A candle loses nothing by lighting another candle."
  Friends Make The World Go Round.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

AND FINALLY A PARENT WHO WILL NEVER GIVE UP:

Strongest Dad in the World [From Sports Illustrated, By Rick Reilly]

I try to be a good father. Give my kids mulligans. Work nights to pay for their text messaging. Take them to swimsuit shoots. But compared with Dick Hoyt, I suck.

Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlebars--all in the same day.

Dick's also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him across the U.S. on a bike. Makes taking your son bowling look a little lame, right?

And what has Rick done for his father? Not much--except save his life.

This love story began in Winchester, Mass., 43 years ago, when Rick was strangled by the umbilical cord during birth, leaving him brain-damaged and unable to control his limbs. "He'll be a vegetable the rest of his life;'' Dick says doctors told him and his wife, Judy, when Rick was nine months
old. "Put him in an institution."

But the Hoyts weren't buying it. They noticed the way Rick's eyes followed them around the room. When Rick was 11 they took him to the engineering department at Tufts University and asked if there was anything to help the boy communicate. "No way,'' Dick says he was told. "There's nothing going on in his brain.'' "Tell him a joke,'' Dick countered. They did. Rick laughed. Turns out a lot was going on in his brain.

Rigged up with a computer that allowed him to control the cursor by touching a switch with the side of his head, Rick was finally able to communicate. First words? "Go Bruins!'' And after a high school classmate was paralyzed in an accident and the school organized a charity run for him, Rick pecked
out, "Dad, I want to do that.''

Yeah, right. How was Dick, a self-described "porker'' who never ran more than a mile at a time, going to push his son five miles? Still, he tried. "Then it was me who was handicapped,'' Dick says. "I was sore for two weeks.''

That day changed Rick's life. "Dad,'' he typed, "when we were running, it felt like I wasn't disabled anymore!'' And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly shape that he and Rick were ready to try the 1979 Boston Marathon. "No way,'' Dick was told by a race official. The Hoyts weren't quite a single runner, and they weren't quite a wheelchair competitor. For a few years Dick and Rick just joined the massive field and ran anyway, then they found a way to get into the race officially: In 1983 they ran another marathon so fast they made the qualifying time for Boston the following year. Then somebody said, "Hey, Dick, why not a triathlon?''

How's a guy who never learned to swim and hadn't ridden a bike since he was six going to haul his 110-pound kid through a triathlon? Still, Dick tried.

Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii. It must be a buzzkill to be a 25-year-old stud getting passed by an old guy towing a grown man in a dinghy, don't you think?
Hey, Dick, why not see how you'd do on your own? "No way,'' he says. Dick does it purely for "the awesome feeling'' he gets seeing Rick with a cantaloupe smile as they run, swim and ride together.

This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters.  Their best time? Two hours, 40 minutes in 1992--only 35 minutes off the world record, which, in case you don't keep track of these things, happens to be held by a guy who was not pushing another man in a wheelchair at the time.
"No question about it,'' Rick types. "My dad is the Father of the Century.'' And Dick got something else out of all this too. Two years ago he had a mild heart attack during a race. Doctors found that one of his arteries was 95% clogged. "If you hadn't been in such great shape,'' one doctor told him, "you probably would've died 15 years ago."

So, in a way, Dick and Rick saved each other's life. Rick, who has his own apartment (he gets homecare) and works in Boston, and Dick, retired from the military and living in Holland, Mass., always find ways to be together.

They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day. That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy. "The thing I'd most like,'' Rick types, "is that my dad sit in the chair and I push him once."

This is a video clip of the Father and Son team that did the Iron Man together.
http://www.youtube.com/watch?v=WjPrL3n63yg

I HOPE SOME HOW THIS REACHS A PERSON IT IS INTENDED FOR!

MELTDOWN BECAUSE OF A MILKSHAKE

HURRAY   JACK IN THE BOX IMPROVED THEIR MILKSHAKES! DID YOU KNOW THAT  OR DID YOU EVEN NOTICE THAT THE LAST TIME YOU WENT THERE??? YES THEY HAVE PUT THE MILKSHAKE IN A DIFFERENT CLEAR PLASTIC  GLASS  WITH A DOME TOP SO THEY CAN PUT WHIPPED CREAM  AND A CHERRY ON TOP---GREAT YOU SAY MORE FOR THE MONEY

WELL NOT FOR A KID WITH AUTISM AND OCD-- DONT THEY REALIZE THEY JUST SCREWED WITH THE ROUTINE?? OF COURSE NOT ! DONT MISUNDERSTAND ME I KNOW THAT THINGS WILL CHANGE ;THINGS WILL EVOLVE AND PRODUCTS ARE CONSTANTLY CHANGING TO APPEAL TOP A WIDER CONSUMER BASE BUT IN THE EYES  OF AN AUTISTIC THEY JUST TURNED  THE WORLD UPSIDE DOWN.

YESTERDAY WE WENT TO JACK IN THE BOX TO GET THE ""USUAL""ORDER AND FOR ABOUT THE 3 RD OR 4 TH TIME THE QUESTION WAS ""DO YOU STILL WANT THE MILKSHAKE?"" "I DONT KNOW!"  "I DONT CARE ANYMORE!" AS THE MOOD IN THE CAR BEGINS TO ESCALATE.  "OK" I SAY AND I GO AHEAD AND ORDER THE DAMN SHAKE KNOWING THAT IT WILL BE WASTED BUT PAYING 2 BUCKS IS A SMALL PRICE TO PAY TO AVOID A BEHAVIOR THAT CAN SCREW UP THE WHOLE DAY --AT LEAST THATS MY THINKING SO WE GO THRU THE DRIVE THRU AND GET THE ORDER EVERYTHING SEEMS TO BE  OK AND WE GET HOME. A LITTLE ATTITUDE BUT IT SEEMS TO BE OK. WE START TO GET THE FOOD OUT ON THE TABLE AND GOD FORBID I COMMITTED THE SIN OF ALL SINS  I REACHED INTO THE PLASTIC DOME OF THE MILKSHAKE AND STARTED TO PUT THE CHERRY IN MY MOUTH AND HERE STARTS THE TORNADO----""WHAT ARE YOU DOING WITH MY SHAKE??--SCREAMING AT THE TOP OF HIS LUNGS"" "ITS  OK HERES THE CHERRY BACK I JUST TOOK THE WHIPPED CREAM OFF THE CHERRY'' "YOU CANT DO THAT!" AND THE MELTDOWN  ENSUES---

HE STARTED TO GROWL AND LUNGE TOWARD ME  CALLING ME A VARIETY OF NAMES.THEN HE STARTED TO GET PHYSICAL TOWARD ME HE GRABBED MY FACE AND I TOLD HIM TO LET GO AND TOLD HIM THAT IF HE GRABBED A STRANGER THEY WOULD FIGHT BACK AND HE HAD BETTER LEARN HOW TO WALK AWAY OR NOT TOUCH SOMEONE BUT HE INSISTED ON PURSUING SQUASHING MY FACE SO I BROKE LOOSE AND SWATTED HIM WITH AN OPEN HAND ON THE BACK WELL THAT JUST ENFURIATED HIM EVEN MORE THEN HE STARTED COMING AT ME SWINGING HIS ARMS SO I STOOD THERE AND LET HIM SWAT AT ME -- THEN HE GRABBED MY HAND AND WANTED ME TO HIT HIM BACK AND I TOLD HIM --NO I WAS NOT GOING TO DO THAT -- IF HE WAS ANGRY HE WOULD HAVE TO WORK IT OUT HIMSELF BUT I WAS DONE .

I TRIED TO DIRECT HIM TO THE BEDROOM BUT HE WAS HAVING NONE OF THAT STRATEGY. HE WAS JUST BEHIND HIMSELF SO THEN HE DECIDED HE WAS GOING TO CALL THE POLICE AND HAVE ME "TAKEN AWAY" I  EXPLAINED  TO HIM THAT I WOULDNT BE THE ONE TO BE TAKEN AWAY IF THE POLICE CAME AND SAW THE RED MARKS ON MY ARMS -- HE JUST COULDNT UNDERSTAND WHY THEY WOULDNT TAKE MOM AWAY--WHEN HE HEARD THAT INFORMATION HE WAS EVEN MORE PISSED HE TOLD ME" TO GET OUTTA HERE"

THEN I SAID WHO WILL HELP YOU IN THE BATHROOM AND SHOWER? WHOS GONNA DO YOUR WASH AND HELP YOU GET FOOD IN YOUR BELLY? "I WILL DO IT MYSELF" I SAID "OK I GUESS I AM LEAVING THEN."

AT FIRST HE WAS FINE WITH IT BUT WHEN I FINALLY STARTED FOR THE DOOR WITH MY PURSETHE  BEHAVIOR ALL OF A SUDDEN  DEFLATED                                  I HEAR  "I'M SORRY MOMMA"  I SAID "NO I WILL LEAVE"    HE SAID "NO MOMMA  DONT LEAVE"   AND THAT WAS ABOUT THE END OF THE BEHAVIOR.

IT IS SO HARD TO WRAP YOUR HEAD AROUND WHAT OUR KIDS GO THROUGH AND YOU HAVE TO KEEP  REMINDING  YOURSELF THAT THEIR HEADS ARE IN CHAOS AND CANT DECIFER  THE STATIC  THAT INFUSES THEIR BRAINS. IN THE HEAT  OF THE MOMENT ITS SO EASY TO REACT LIKE YOU WOULD WITH A TYPICAL PERSON OR CHILD . ALL ALONG YOU HAVE TO CONTINUE TO AMINTAIN AS MUCH CALM AND PEACE AS POSSIBLE BECAUSE IT IS IN FACT THE ONLY THING THAT WILL BRING OUR KIDS BACK TO "OUR WORLD" WHEN THEIR BODIES  CANT.

SO THE NEXT TIME YOU GO TO JACK IN THE BOX HAVE A MILKSHAKE AND THINK ABOUT YOUR MANY BLESSINGS AND HOW EASY IT WAS TO ORDER THAT BEVERAGE AND NOT HAVE                                 A MELTDOWN OVER A MILKSHAKE! 

AWARENESS- - UNDERSTANDING- - PATIENCE

THINGS HAVE BEEN RATHER TRYING AROUND HERE FOR THE PAST COUPLE OF MONTHS AND AVOIDING  MOST OF THE DETAILS  I HAVENT BEEN COMPELLED TO TAKE THE TIME TO WRITE---

AT FIRST I THOUGHT IT WAS BECAUSE I DIDNT HAVE THE TIME AND THEN I THOUGHT IT WAS BECAUSE  I HAD "SAID" WHAT I WANTED TO SAY ABOUT AUTISM  BUT I HAVE DECIDED ITS JUST BURN OUT OR WRITERS BLOCK--HAHA  IMAGINE FEELING GUILT OF NOT WRITTING IN MY OWN JOURNAL  WHATS UP WITH THAT???

THE OVERALL THEME THAT KEEPS PLAYING   IN MY HEAD RIGHT NOW  IS THAT I DONT SEEM TO HAVE A SPECIFIC INCIDENT TO DRAW FROM  BUT A SERIES OF THINGS THAT HAVE HAPPENED RECENTLY THAT HAVE COMPELLED ME TO TAKE TO THE KEYBOARD ONCE AGAIN

FROM A PERSONAL POINT OF VIEW  I HAVE ALWAYS SAID THAT THE ONE THING  MY SON AND AUTISM HAS TAUGHT ME IS PATIENCE -- OHHH NOT A LOT OF IT BUT MUCH MORE THAN I HAD BEFOR MY SON WAS BORN AND THERE ISNT A DAY THAT GOES BY THAT I DONT HAVE TO STOP AND BREATHE AND RE-GROUP TO ALLOW OUR HOME TO BE A BETTER PLACE MOSTLY FOR DAKOTA BUT FOR ME TOO. IT IS A DIFFICULT TASK TO UNDERTAKE  WHEN THE PRESSURE OF EVERYDAY LIFE GETS IN THE WAY BUT THERES A SAYING IN OUR HOUSE THAT IS ""ITS A MIRACLE WE HAVE NOT ALL ENDED UP IN PATTON""{THATS A STATE MENTAL HOSPITAL HERE IN             SO-CAL}

THAT BEING SAID I CANT TELL YOU HOW MANY MOMS I HAVE CORRESPONDED WITH OR TALK WITH IN A SUPPORT GROUP  OR ON THE PHONE THAT DEAL WITH THE SAME THING  COUPLED WITH THE PRESSURE OF MAINTAINING A TYPICAL FAMILY ITS ENOUGHT TO DRIVE YOU  NUTS. THE MAIN FEELING I GET FROM ALL OF THEM IS THE PRESSURE IS EMMENSE AND AUTISM THROWS A WRENCH INTO EVEN THE SIMPLESTTASK--CAN YOU IMAGINE JUST WANTEING TO GO TO THE STORE FOR MILK  SO YOU GET YOUR SELF PRESENTABLE ;YOU ROUND UP THE KIDS CUZ OF COURSE THEY ARE ALL OUT OF SCHOOL THAT DAY AND YOU HAVE TO GO BECUASE YOU NEED TO PICK UP TOILET PAPER TOO --YOU ARE OUIT AND THE FAMILY NEEDS IST AND NEEDS IT TODAY  HUBBY IS AT WORK OF COURSE AND HELPING SOMETIMES BUT NOT REALLY PLUGGED IN AND IT JUST SEEMS SIMPLER TO DO YOURSELF AFTERALL YOU ARE THE HOMEMAKER AND ITS YOUR JOB SO YOU START THIS JOURNEY--I DIGRESS--

SO YOU ARE JUST ABOUT TO WALK OUT THE DOOR AND THE AUTISTIC ONE STARTS SCREAMIMNG AND DECIDES TO LOCK HIMSELF IN HIS ROOM-- WELL OF COURSE YOU SAY SHOULD NT HAVE LOCKS ON THE DOORS --WELL THERE ARENT ANY BUT HE IS ON THE BED AND STONEWALLING REFUSING TO GO-- ITS EITHER HIS LACK OF ABILITY TO  CHANGE SCHEDULES BECUASE THIS IS UNPLANNED  OR THERES SOMETHING ELSE GOING ON  SO YOU PUT ALL YOUR TOOLS TOGETHER AND COAX HIM OUT OF THE ROOM IN THE MEANTIME THE OTHERS HAVE GOTTEN ROWDY AND ARE CAUSING  OTHER  GRIEF  ;SO YOU MANAGE TO MAKE IT TO THE CAR AND YOU TELL YOUR AUTISTIC ONE WHAT YOU ARE DOING SCRIPTING THE TRIP SO THERE IS NO ANXIETY AND TO START ON YOUR REGULAR PATH AND THERE IS A ROAD BLOCK SO YOU HAVE TO TAKE AN ALTERNATE PATH-- SHOULDNT BE A PROBLEM  THATS WHAT YOU THINK ALL OF A SUDDEN THE RAGE IS BACK BECAUSE THE ROUTINE IS INTERUPTED ONCE AGAIN YOU DO WHAT YOU CAN BUT YOU CONTINUE TO MOVE CUZ YOU ARE ALMOST ABLE TO ACCOMPLISH YOU MISSION--MILK AND TOILET PAPER!!! YAHOO

AFTER SOME YELLING IN THE MINI VAN  AND A DETOUR YOU ARRIVE AT THE STORE ONCE AGAIN WITH THE TYPICAL SIBLINGS PULLING TEIR REG NONSENSE BEING KIDS AND THEN THERE THE GUY THAT NEEDS SPECIAL ATTENTON--- OH THE PLACE I USUALLY PARK IS FULL HAVE TO GO SOMEPLACE ELSE SHOULDNT BE A PROBLEM RIGHT??? WRONG WE HAVE THE ABILITY TO ABSORB AND TOLERATE THESE CHANGES IN LIFE WITHOUT THINKING AND WITHOUT  INCIDENCE OUR KIDS DONT! SO ANOTHER OUT BURST  YOUR GUY IS TRYING BUT CHANGES CHANGES CHANGES WRONG DAY FOR THE STORE WRONG PATH TO THE STORE WRONG PARKING AREA AT THE STORE AND GOD NKNOWS WHAT LIES ION THE STORE-- PIPES IN MUSIC THAT CAN BE LIKE A LOUDSPEAKER TO THEM ;SOMEONE WITH PERFUME OR AFTERSHAVE THATS SETS OFF THEIR SENSE OF SMELL;SOMEONE THAT COMES TO CLOSE AND INVADES THEIR PERSONAL SPACE; FLOURESCENT LIGHTS THAT FLICKER JUST ENUF TO SET THEM OFF; A COLOR OR TEXTURE OR SOMETHING AS SIMPLE AS AN LADY GIVING OUT SAMPLES THAT IS NOT USUALLY THERE AND ALL OF A SUDDEN THERE SHE IS STANDING NEAR AN  AISLE  THAT YOU HAVE TO GO DOWN AND YOUR CHILD IS FREAKED---OH I COULD GO ON BUT I THINK I HAVE REVEALED THE GIST  OF THE STORY-- EVERY LITTLE THING THAT WE TAKE FOR GRANTED BECAUSE IN A SENSE WE HAVE AN "AUTOMATIC TRANSMISSION" TO ADJUST TO THESE EVER CHANGING EVER EVOLVING SET OF CIRCUMSTANCES: OUR AUTISTIC KIDS HAVE "MANNUAL TRANMISSIONS" AND  YOUHAVE TO START IN  NEUTRAL, STEP ON  THE CLUTCH AND THEN SHIFT INTO GEAR BEFORE YOU CAN  ENGAGED IN TRAVEL----YOU HAVE TO THINK ABOUT EVERYTHING AND KEEP IN MIND THAT THESE KIDS JUST CANNOT DIGEST LIFE THE WAY MOST OF US DO   AND NO MATTER HOW EFFICIENT THESE MOMS WANT TO E THERE ARE EXTRA STEPS THAT HAVE TO BE TAKEN TO ACCOMODATE THE GLORIUS CHILD HTHAT HAS CHALLENGES WE CANNOT UNDERSTAND-- OFTEN TIMES THE TYPICAL PART OF THE FAMILY SACRAFICES . THE MOM FEELS THE TUG ON MER HEART STRINGS AND HATES TO AGAIN AND AGAIN MAKE HER FAMILY ADJUST BUT THATS WHAT MOMS DO  THAT MAKE SURE THAT THEY HAVE DONE ALL THEY CAN TO MAKE SURE EVERYONE IN THE FAMILY HAS EQUAL CONSIDERATION WHICH REALLY MEANS THE SPECIAL KID GETSA MORE CONSESSIONS THAN THE OTHER ONES 

FAIR IS NOT NECESSARILY EQUAL

IT IS WHAT IT TAKES TO GIVE EACH INDIVIDUAL THE NECESSARY TOOLS IN  LIFE  OR WHERE EVER TO BE  SUCESSFUL

THAT MEANS A HUGE AMOUNT OF

AWARENESS--- UNDERSTANDING    AND PATIENCE! 

Fricken Fracken Fourth of July

WELL WHERE DO I BEGIN?????

I HAD SPENT MANY HOURS PLANNING A TRIP TO THE QUEEN MARY TO CELEBRATE MY MOMS BIRTHDAY--ORIGINALLY THE PLAN WAS FOR HER TO SPEND A COUPLE OF DAYS WITHOUT "THE AUTISM"-- I TRIED TO ARRANGE FOR A LIFELONG FRIEND TO ACCOMPANY HER TO THE SHIP WHILE --DAKOTA AND I STAYED BACK AT THE "HOMESTEAD"   YEAHHHHHH  RIGHTTTTT-

SO WHEN THAT PLAN FELL THRU HER FRIEND WAS UNABLE TO COME  WE MADE THE BEST OF IT---ALTERNATE PLANS HAD Been MADE AND EVERYTHING SEEMED TO BE ON TARGET--ANOTHER CLOSE FRIEND OF OURS WENT WITH US FOR THE BEGINNING OF THE TRIP WHICH WAS VERY LOVELY BUT ALSO SHORT LIVED! WE FOUND A WONDERFUL RESTAURANT WHICH TURNED OUT TO BE A GREAT SURPRIZE. IT IS CALLED PARKERS LIGHTHOUSE ON SHORELINE DRIVE IN LONG BEACH .I THOUGHT IT WAS GOING TO BE OVER PRICED AND THE FOOD NOT VERY GOOD BECAUSE OF ITS LOCATION I THOUGHT THEY WOULD RELY ON BUSINESS GENERATED BY THE TOURISTS;AS IT TURNED OUT THE FOOD WAS GREAT AND REASONABLY PRICED  AND PREPARED QUITE WELL. IT WAS THE HIGHLIGHT OF OUR WHOLE TRIP.

MONDAY AFTERNOON FOUND US RETURNING HOME TO GET DAKOTA WHO HAD DECIDED TO  STAY TILL TUESDAY MORNING BECAUSE THERE IS A PARADE ON EUCLID  EARLY ON THE FOURTH  AND THEN WE WOULD RETURN TO THE SHIP                                   5AM FOUND DAKOTA AWAKE AND BY 5:45 HE WAS PUKING----YEP WHAT WAY WAY TO START THE DAY.THIS KID WAS SO SICK AND HE HATES TO THROW UP SO EVERYTIME THE URGE CAME HE FOUGHT IT AND WAS REFUSING TO USE THE TOILET.NEEDLESS TO SAY IT WAS A VERY TRYING DAY--I FINALLY FIGURED OUT THAT THE ONLY SOLUTION WAS TO PUT HIM IN THE SHOWER THAT WY WE HAD A WAY TO "CONFINE" THE "OUT POURING OF MATTER"! BEFORE IT WAS ALL OVER IT WAS COMING OUT THE OTHER END TOO. OK TRYING NOT TO GET TOO GRAPHIC WHAT A MESS! MOM AND I DID LAUNDRY FOR ALMOSGHT HOURS STRAIGHT AS EVERYTIME THE "URGE "CAME WE "PAID HELL"TRYING TO GET DAKOTA  INTO A PLACE WHERE THER WOULDNT BE TOO MUCH MESS-- SHEETS TOWELS BLANKETS COMFORTERS .I GUESS THATS ONE WAY TO GET ME TO WASH ALL MY BEDDING 2 ,3, OR 4 TIMES IN ONE DAY! BY ABOUT 3PM THINGS CALMED DOWN BUT WERE NOT OVER ABOUT 5                     I STARTED TRYING TO FIGURE OUT WHAT I WAS GOING TO DO WITH THE ROOM AT THE QUEEN MARY . WE WERE STUCK WITH THE RESERVATION ,NO REFUNDS , SO SHOULD WE DO??? AROUND THE TIME FOR FIREWORKS WE DECIDED WE MIGHT AS WELL BE MISERABLE ON THE QUEEN MARY AS TO BE MISERABLE AT HOME SO WE WENT BACK,THINGS WERE OK TILL ABOUT 2:30 IN THE MORNING WHEN DAKOTA HAD A PROBLEM IN THE BED---YEP WE HAD TO CALL THE FRONT DESK AND HAVE THE BED RE-DONE JUST A LOVELY THING TO DO AT 2:30 IN THE MORNING---   LATER DAKOTA GOT UP AND SAID HE WAS OK BUT STILL WEEK AND NOT EATING RIGHT BY AFTERNOON WE STROLLED AROUND THE SHIP GOT BACK TO OUR ROOM AND I GOT SICK ALMOST IMMEDIATELY  OH MY GOD WHAT A TRIP  I WAS SO SICK I WASNT SURE I WAS GOING TO BE ABLE TO DRIVE HOME THE NEXT DAY---I COULDNT EVEN TAKE  A TEASPOON OF WATER ;I WAS MISERABLE. I THOUGHT I WAS GOING TO HAVE TO HIRE SOMEONE TO DRIVE HOME  WHAT A WAY TO CELEBRATE YOUR MOTHERS BIRTHDAY!

TO THINK I HAD BEEN PLANNING FOR MONTHS DOING EVERYTHING I COULD TO MAKE A NICE EVENT FOR HER 80TH BIRTHDAY AND WHAT THE HELL HAPPENED?  WHAT IT TELLS ME IS THAT I AM RIGHT; THAT YOUCAN PLAN AND PLAN AND SAVE AND PLOT OUT YOUR FUTURE BUT YOU NEVER KNOW WHAT MIGHT HAPPEN   YOU HAVE TO LIVE EACH DAY TO THE FULLEST AND SEI THE DAY BECAUSE YOU NEVER KNOW WHEN YOUR LAST MOMENT WILL BE ON THIS EARTH-- BEING PRUDENT AND SAVING CAN BE WISE BUT THERES ALWAYS THE POSSIBILITY THAT YOU WILL DO IT IN VEIN.  YOU HAVE TO LIVE LIFE ON THE EDGE TAKE EVERY DAY FOR WHAT IT PRESENTS TO YOU AND DO NOT LOOK BACK WITH REGRET--THE SAYING THAT IS MY FAVORITE RIGHT NOW IS YOU WILL NEVER REGRET THE THINGS YOU DO :YOU WILL ONLY REGRET THE THINGS THAT YOU DONT DO!

I THINK THIS APPLIES DIRECTLY TO OUR KIDS TOO-- WE HAVE TO SEI THE OPPORTUNITIES AS THEY PRESENT THEMSELVES AND NEVER REGRET TRYING OR EXPERIMENTING -- IT MAY TURN OUT TO  THE ANSWER TO YOUR PRAYERS!

WARNING

OK  I AM NOTORIOUS FOR USING THINGS THAT MAY HAVE HAD AN EXPIRATION DATE THAT HAS PASSED  BUT NO MORE

OUR KIDS HAVE ENUF TO DEAL WITH --WITHOUT THIS KIND OF TROUBLE   HOPE YOU ALL LEARN SOMETHING FROM  THIS:

Got this from a friend and thought this was worth passing on. I had never heard of this till now.

I recently made a batch of pancakes for my healthy 14-year-old son, using a mix that was in our pantry. He said that they tasted "funny," but ate them anyway. About 10 minutes later, he began having difficulty breathing and his lips began turning purple. I gave him his allergy pill, had him sit on the sofa and told him to relax. He was wheezing while inhaling and exhaling. My husband, a volunteer firefighter and EMT, heated up some water, and we had my son lean over the water so the steam could clear his chest and sinuses. Soon, his breathing became more regular and his lips returned to a more normal color. We checked the date on the box of pancake mix and, to my dismay, found 20it was very outdated. As a reference librarian at an academic institution, I have the ability to search through many research databases. I did just that, and found an article the next day that mentioned a 19-year-old male DYING after eating pancakes made with outdated mix. Apparently, the mold that forms in old pancake mix can be toxic! When we told our friends about my son's close call, we were surprised at the number of people who mentioned that they should check their own pancake mix since they don't use it often, or they had purchased it some time ago. With so many people shopping at warehouse-type stores and buying large sizes of pancake mix, I hope your readers will take the time to check
  the expiration date on their boxes. Also, beware of outdated cake, brownie and cookie mixes.

There's more info at snopes.com.  Here's the link:

www.snopes.com/medical/toxins/pancake.asp

Lesson learned; be sure to check dates on everything and basically, just don't eat anything old!

PASS IT ON!!!!

Thoughts About the "Brick"

Just a quick thought or 2 about this story "The Brick" below

I know there are many other people going thru different trials and tribulations of different magnitude and i dont pretend to be the only person who is trying to make sense of it all

However Itruly believe that those of us who are faced with special challenges have just a smiddgeon more understanding about how to be thankful for the little things in life--- to simpliy get up in the morning turn off the alarm get yourself up, get on with your day and come home to a quiet home in the evening is a blessing beyond compare.  If you dont take time to smell the roses and appreciate it  You will find yourself speeding down a road in your fancy car and it will take a BRICK                    TO REMIND YOU   HOW DELICATE  LIFE CAN BE!!!

So please stop and take a minute look around and embrace your blessings

In the flash of a moment it can change!

The Brick

THE BRICK A young and successful executive was traveling down a neighborhood street, going a bit too fast in his new Jaguar. He was watching for kids darting out from between parked cars and slowed down When he thought he saw something. As his car passed, no children appeared. Instead, a brick smashed into the Jag's side door! He slammed on the brakes and backed the Jag back to the spot where the brick had been thrown. The angry driver Then jumped out of the car, grabbed the nearest kid and pushed him up against A parked car shouting, "What was that all about and who are you? Just what the heck are you doing? That's a new car and that brick you threw is going to cost a lot of money. Why did you do it?" The young boy was apologetic. "Please, mister...please, I'm sorry but I didn't know what else to do," He pleaded. "I threw the brick because no one else would stop..." With tears dripping down his face and off his chin, the youth pointed to a spot just around a parked car. "It's my brother, "he said "He rolled off the curb and fell out of his wheelchair and I can't lift him up." Now sobbing, the boy asked the stunned executive, "Would you please help me get him back into his wheelchair? He's hurt and he's too heavy for me." Moved beyond words, the driver tried to swallow the rapidly swelling lump in his throat. He hurriedly lifted the handicapped boy back into the wheelchair, then took out a linen handkerchief and dabbed at the fresh scrapes and cuts. A quick look told him everything was going to be okay. "Thank you and may God bless you," the grateful child told the stranger. Too shook up for words, the man simply watched the boy! Push his wheelchair-bound brother down the sidewalk toward their home. It was a long, slow walk back to the Jaguar. The damage was very noticeable, but the driver never bothered to repair the dented side door. He kept the dent there to remind him of this message: "Don't go through life so fast that someone has to throw a brick at you to get your attention!" God whispers in our souls and speaks to our hearts. Sometimes when we don't have time to listen, He has to throw a brick at us. It's our choice to listen or not. Thought for the Day: If God had a refrigerator, your picture would be on it. If He had a wallet, your photo would be in it. He sends you flowers every spring. He sends you a sunrise every morning Face it, friend - He is crazy about you! God didn't promise days without pain, laughter without sorrow,sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. Read this line very slowly and let it sink in... If God brings you to it, He will bring you through it.

STRUGGLING WITH ANXIETY

I HAVE BEEN ATTEMPTING TO TAKE DAKOTA OFF THE RESPIRIDOL-- HIS AGRESSIVE BEHAVIOR AND OTHER FACTORS SEEM TO HAVE DIMINISHED DRAMATICALLY IN THE PAST YEAR OR SO I HAVENT REALLY TOLD ANYONE CUZ IN THE PAST WHEN I TOLD SOMEONE ITS SEEMED AS IF SOMEONE WOULD COME UP WITH "INCIDENTS" THAT INDICATED THAT HE "NEEDED " THE MEDICINE-- SO THIS TIME I HAVENT TOLD ANYONE  AND  ALL SEEMS TO HAVE BEEN GOING WELL --------------------- HOWEVER IN JUST THE PAST FEW WEEKS I HAVE NOTICED THAT HS HAS HAD AN INCREASE IN REPETITOUS BEHAVIOR AND A HUGE AMOUT OF ANXIETY PARTICULARLY ABOUT WHATS NEXT-- FIRST ITS THIS BIRTHDAY OR THAT BIRTHDAY THEN WE HAVE SCHOOL STARTING AGAIN THEN ITS HALLOWEEN ;THANKSGIVING AND CHRISTMAS AND SO ON AND SO ON IT KEEPS GOING AROUND IN HIS HEAD FINALLY IT HAS DAWNED ON ME THAT ALTHOUGH HE IS DOING QUITE WELL BEHAVIOR WISE WITHOUT THE MEDS HIS HEAD IS ABOUT TO EXPLODE AND HE JUST CANT TELL ME --I HAVE TO OBSERVE IT.  JUST THE PAST 2 DAYS OR SO IT HAS BECOME VERY APPARENT TO ME THAT THE RESPIRIDOL IS DOING MUCH MORE THAN REMOVEING BEHAVIORS IT IS HELPING DAKOTA LIVE EACH DAY WITHOUT THE ANTICIPATION "WHATS NEXT" I DO REALIZE THAT HALF OF WHAT GOES ON WITH HIM IS HOW HIS BRAIN WORKS ;WHAT I FAILED TO SEE IS THAT THE MEDS DO MORE THAN HELP HIM PHYSICALLY WE HAVE TO KEEP HIS BRAIN FROM THAT SHITTY ""STATIC"" OR WHAT I CALL ANT RACES LIKE THE SCRIBBLY STUFF ON THE TV WHEN A CHANNEL GOES OUT CAN YOU IMAGINE HAVING TO FUNCTION IN THIS WORLD WITH ALL THAT STUFF GOING ON IN YOUR HEAD? I CANT!

ITS NOW SUMMER

WELL  IF THERE IS ANY DOUBT -- ON June 21ST WE HAD OUR SUMMER SOLSTICE  THE LONGEST DAY OF THE YEAR BUT MORE IMPORTANTLY DAKOTA CAN NOW SWIM!!!!

DONT ASK ME WHERE THIS TRAIN OF THOUGHT CAME FROM  BUT SOMEWHERE IN THE PAST MONTHS DAKOTAS HAS MADE IT ABUNDANTLY CLEAR THAT  YOU SWIM WHEN ITS SUMMER!

THATS RIGHT; NOT IN APRIL IF ITS 100 DEGREES OR OCTOBER  IF ITS  INDOORS BUT YOU HAVE TO WAIT FOR JUNE 21 ST

EVEN HAD THE DOCTOR SIT DOWN WITH HIM AND "ALTER " THE RULES BUT DAKOTA IS HAVING NOTHING TO DO WITH IT    IF IT ISNT SUMMER YOU CANT SWIM

SO I JUST ANTED EVERYONE TO KNOW THAT THEY CAN SWIM NOW THAT IT IS OFFICIALLY SUMMER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

 

The Week from Hell

Boy  did i have the week from hell!!!!!!!!!!!!!!!!!!!!!!!! 3 different meetings about Daks education plan and placement as well as docotr and dentist appointments couple with a few crisis at home and VIOLA' what a week!

Have been trying to "broker" a deal with the department head for a new placement in school for my son. He has become too comfortable in the classhe is in and there are changes coming so Now Is The Time.

Short of pissing and moaning about whats happening in the class and whining about how hes not getting what I think he should I have chosen to move forward with another plan. I believe that he is a lost cause in this enviroment and instead of trying to re-invent the classroom I will move him to a new classroom.

I have been suffering from some pretty strong depression about my failure to get all the things he needs in school but at this point That is not  productive,   I believe that Dak was definitely ahead of the curve when it came to securing services for Autism. My only hope is that we pioneered the way for other parents and kids that came after us to get things we werent sucessful  in securing. I still beleive that my son has untapped talent in academics as well as occupational skills and short of me spending every day all day in his class room policing his IEP  I have no way to know exactly what goes on in class--and for those of you who dont realize it when you have an autistic child he doesnt come home and tell you ANYTHING!!!!! Was the teacher there, did you get your speech therapy, did the adaptive PE teacher show up did you go to the library today , what did you have for lunch, are you hungery???                                                        Have you ever had to ask these questions and not got some kind of answer?????  With an autistic child many have the ability to answer or the verbal skills and just wont or cant others dont speak at all --- Can you imagine as  a parent how frustrating this is???not knowing if some one has treated your child well , or if theres an activity your child could participate but he doesnt tell you about it--

Ok I am getting on my soap box    But really many dont think about all these things.  They justdont rewalize how much they take for granted  how fortunate they are to have to deal with everyday drama--                                                                        But I have to tell you along with the frustrating things comes the appreciation that I have a child who still wants to be around his parents{most of the time} and doesnt walk around with his pants hanging down to his kness who has every other word coming out of his mouth as a cuss wordis in to drugs and hasnt gotten some girl pregnant Sooooooooo there much to be Thankful for

Missing In Action

Well all I can say  Is I am definitely behind ---

I would like to say that its mostly because I have been outrageously busy but part of it has been a slump I seem to be Suffering.This Too Shall Pass

Living with Autism every day affects every facet of youre life and life within the family-- consessions and alterations to all activities and plans--Dont get me wrong some of it is very positive and character building but by the same token it can be exhausting.Sometimes you have to over think strategies before embarking on what used to be an impetuous action-- for instance --a trip to the store or an appointnet for the doctor or dentist.

 It has taught me a lot about my son but also life in general and how we do so many things in everyday life that we dont even think about and how our actions affect others. A simple  example is when my son was very small i used to talk to him about the outing we were embarking on BEFORE we got in the car --I would say we are going to go the the store ,the bank and the drug store-- then i go to the bank first --he starts to scream  It took me a while but I finally figured out that the order I told him was different than the order we went   Its amazing to think that we as typical people can adjust to these  subtle nuances of change but autistic people cannot-- they have to know       "whats next" Classic Anxiety.  I guess what i am trying to say is the past couple of weeks have been ""coping weeks""  a little of taking time away from the journal mixed with several obligations and personal issues-So for anyone who wondered where I was-- well now you know 

PROM 2006

AFTER MISSING THE EVENTS AT THE END OF THE SCHOOL YEAR IN 2005 [the leg--you know!] I HAVE REALLY TRIED TO GET DAKOTA TO GET INVOLVED-- OR AT LEAST INTERESTED .  FOR THE MOST PART HE STILL IS VERY RESISTANT AND OFTEN TIMES SEEMS TO SUFFER FROM A LOT OF ANXIETY

YESTERDAY WAS THE "PROM"  THIS FUNCTION IS SPECIFICALLY DESIGNED FOR THE CHALLENGED KIDS IN THE MANY DISTRICTS IN OUR AREA-- 2 YEARS AGO THEY HAD IT AT A  RATHER SMALL OFFICE WITH A MULTI-PURPOSE BUILDING. THE EVENT WAS A NICE GESTURE BUT REALLY FAR FROM ANYTHING EVEN Recognizably  CLOSE TO A REAL PROM. 

WELL THIS YEAR I GIVE THEM BIG KUDOS -- I HAVE TO SAY THAT THIS IS PROBABLY THE BEST THING THAT OUR KIDS HAVE EVER BEEN A PART OF ! THIS WAS AN UPLIFTING  EXPERIENCE-- AND IT HAD ALL THE "BUTTONS AND BELLS" THAT MADE IT A REAL PROM---WITHOUT ALL THE BORING DETAILS  JUST IN GENERAL THERE WAS  A BEAUTIFULLY DECORATED HUGE HALL WITH A LIVE ROCK BAND, DOOR PRIZES, Souvenirs  BALLOONS AND FOOD.

THE MOST IMPORTANT THING WAS THE KIDS -- THEY WERE ABLE TO DRESS UP AND HAVE AN EVENING THAT WAS EQUAL TO ANY "TYPICAL " EXPERIENCE. WHAT I SAW WAS  A HUGE ADVANCE IN MANY OF THESE KIDS' SOCIAL SKILLS.  I EVEN SAW MY OWN SON RAISE HIS HAND AND MOTION TO A COUPLE OF CLASSMATES WHO JUST ENTERED THE ROOM TO COME OVER AND SIT WITH HIM--WOW! THESE KIDS WERE ON CLOUD NINE AND THE PARENTS IN ATTENDANCE  ALL FELT THE SAME---THIS WAS STELLAR

NEEDLESS TO SAY THIS WAS  THE EVENT OF THE SEASON   ONE THAT WILL GO DOWN IN MY BOOK AS UNFORGETTABLE AND EVEN TODAY I SAW DAKOTA RECOUNT THINGS THAT HAPPENED LAST NIGHT-- WITH A SMILE!

THANK YOU TO ALL OF THOSE WHO MADE THIS EVENT HAPPENED YOU MADE A LOTS OF KIDS VERY HAPPY AND TO TOP IT OFF  THE PARENTS  FOR ONE NIGHT HAD AN EVENING THEY THOUGHT WOULD PROBABLY NEVER HAPPEN---

THEIR CHILDREN GOING TO PROM 2006!!!!!

MY MEETINGS THIS PAST WEEK

JUST A BRIEF UPDATE OF MY 2 MEETINGS THIS WEEK

I LEARNED A LOT AFTER I STTENDED THE SWITZER CENTER ON SUNDAY-- I AM SO EXCITED ABOUT THE PROGRAM THEY ARE DEVELOPING AND THAT THER WILL BE CHILDREN IN A DIFFERENT AGE GROUP BEING SERVED VERY SOON-- I AM PARTICULARLY ENCOURAGED THAT THIS TYPE OF CLASS IS UNFOLDING AND THAT THERE IS HOPE OF MORE CLASSES SERVING OLDER KIDS-- RIGHT NOW THEY WILL ADDRESS 10 TO 14 YEARS OLDS ON THE AUTISM SPECTRUM WITH PLANS TO EXPAND TO HIGH SCHOOL. WHAT MAKES THIS SO GREAT IS THAT SO MANY ARE GETTING EARLY INTERVENTION  IT IS REFRESHING TO KNOW THAT THIS END OF THE POULATION WILL NOT START GETTING SOME OPTIONS.

RELATING THIS TO MY CENTER IS THE FACTOR OF TRANSITION-- THE APPROACH IS RELATIONSHIP DEVELOPEMENTAND WHETHER IS A SCHOOL OR A CENTER THE THEORY IS THE SAME  FOCUS ON THE INDIVIDUALS STRENGTH AND PARLAY THAT INTO LEARNING EXPERIENCES-- WHAT A GREAT WAY TO ENGAGE OUR KIDS AT ANY AGE

I ONLY HOPE THAT THIS SCHOOL CATCHES ON AND THE INLAND EMPIRE WILL EVENTUALLY SEE SOMETHING LIKE IT-- I AM NOT QUITE SURE WHY THE DISTRICTS DONT BAND TOGETHER AND MAKE THEIR OWN CLASSES IT WOULD SAVE SO MUCH MONEY AND BE SO MUCH MORE PRACTICAL THEN A PRIVATE OR NON PUBLIC SCHOOL.

AS FOR MY CENTER WHICH THE HOPE IS TO DEVELOPE A ONE STOP SHOP INCLUDING A SCHOOL EVENTUALLY -MANY OF THE STARTEGIES WILL APPLY  I DID MEET WITH A  GROUP ON MONDAY TO "PITCH'THE CENTER AGAIN AND I BELIEVE THERE IS SOME INTEREST BUT IT APPEARS THAT THE CONCERN IS THE SAME IT IS TOO AGGRESSIVE AND TO AMBITOUS THE WAY I HAVE DESCRIBED IT-- I WILL CONTINUE TO FORGE ON

I INTEND TO PURSUE WAYS TO RAISE MONEY TO DEVELOPE IT MYSELF  IT TAKES A CONSIDERABLE AMOUNT OF SEED MONEY THAT I DONT HAVE BUT THAT WONT STOP ME-- THE OTHER ISSUE IS HOW TO KEEP IT OPEN ONCE IT OPENS --     MY INTIAL THOUGHT IS PERHAPS LIKE A GYM OR YMCA BY MEMEBERSHIP

FOR NOW THERE ARE NO ANSWERS BUT THE DREAM IS STILL ALIVE AND I PRESS ON!!!!

ANYONE OUT THERE ?

HAPPY WEDDING APRIL 29

G & M YOU KNOW WHO YOU ARE

I WISH YOU MANY HAPPY YEARS TOGETHER AS YOU SAY YOUR VOWS AND EMBARK ON THIS WONDERFUL VOYAGE OF LOVE!!!!!!!

THIS IS A PERSONAL NOTE TO SOME VERY IMPORTANT PEOPLE WHOM I KNOW READ MY JOURNAL QUITE FREQUENTLY -- I HAD HOPED TO TRAVEL TO ATTEND THEIR WEDDING BUT AS CIRCUMSTANCES WOULD PRESENT THEMSELVES  IT JUST BECAME IMPOSSIBLE

AND YES IT COMES AS PART OF THE TERRITORY OF LIVING WITH AUTISM-- IN THIS PARTICULAR CASE IT WAS STRICTLY TIMING-- BECAUSE OF THE "ANNIVERSARY " OF  THE BREAK  IT JUST WAS NOT THE RIGHT TIME  FOR US!!

BUT DEFINITELY THE RIGHT TIME FOR G&M!!!!!

 

 

APRIL 27 2006--A YEAR LATER!

ONE YEAR AGO TODAY; DAKOTA BROKE HIS LEG. ALTHOUGH  IT SEEMS THAT I CAN PERHAPS SEE THE LIGHT AT THE END OF THE TUNNEL --OUR FAMILY IS A LONG WAY FROM THE FINISH---- AT THIS POINT MY HEART HAS SUFFERED ANOTHER BLOW FROM WHICH I DONT THINK IT WILL EVER RECOVER AND I HAVE NO ABILITY TO ERASE OR FIX WHAT HAS HAPPENED. IT IS INCREDIBILY FRUSTRATING WHEN YOU THINK YOU HAVE TAKEN EVERY PRE-CAUTION AND YOU HAVE PLACED YOUR CHILD IN THE HANDS OF COMPETENT PEOPLE  ONLY TO HAVE SOMETHING HAPPEN THAT SEEMS TO BE UNEXPLANABLE OR UN ACCOUNTABLE.

TO ARRIVE AT A PLACE WHERE YOU HAVE MOURNED THE FACT THAT YOUR CHILD IS NOT "TYPICALLY DEVELOPING" BUT YOU ARE OK WITH THE CHALLENGE AND ARE FACING IT HEAD ON;TO ASSESS YOUR CHILDS POSITIVE ABILITIES AND ONE OF THEM BEING AN  ABLE BODY WITH 10 FINGERS AND 10 TOES THAT WORK CORRECTLY   AND THEN TO FACE THE FACT THAT NOW THERE IS ANOTHER DISABLING FACTOR IN YOUR CHILDS LIFE  IS DEVASTING--

THE ONLY THOUGHT I HAVE IS , IF  IT HURTS ME THIS MUCH  WHAT IS IT DOING TO MY CHILD? THE BITCH  IS  ""OH THATS RIGHT HE DOESNT HAVE THE ABILITY TO TRUELY TELL ME JUST HOW MUCH IT HURTS , WHEN IT HURTS, WHAT HIS HEAD IS PROCESSING FROM THE FEAR ,THE ABILITY TO  ACTUALLY FEEL THE FEAR AND KNOW WHAT IT IS AND OH YES ,HOW 'BOUT PROCESSING THE FEELINGS AND LEARNING HOW TO RE-COOP FROM THESE FEELINGS AND FEARS                                     WHAT A HELPLESS DAMN FEELING.

AS THE SAYING GOES THO  "IT IS WATER UNDER THE BRIDGE" "DONT CRY OR SPILLED MILK" "PULL YOURSELF UP BY THE BOOT STRAPS AND GET ON WITH LIFE"    YES ITS ALL FINE AND GOOD FOR THOSE WHO LEAD A RELATIVELY NUERO-TYPICAL  LIFE , TO ALL OF US ,IT IS ANOTHER HOLE IN THE BOAT AND THE WATER CONTINUES TO FLOOD THE LIFE RAFT WE CLING ON TO WITH OUR HOPES . THAT THINGS WILL BE BETTER OR THERE IS ANOTHER "CURE" JUST OVER THE NEXT WAVE AS WE DROWN AT SEA.

SOMETIMES IT IS VERY DIFFICULT TO PUT THESE WORDS OUT THERE FOR OTHERS TO READ --BUT THE ONE DRIVING FORCE IS THEFACT THAT I KNOW I AM NOT THE ONLY ONE OUT ON THIS OCEAN JUST TRYING TO SURVIVE AND ALL MY RANTS AND RAVES ARE TO LET THOSE OTHERS KNOW  WE FLOAT IN SEPARATE LIFEBOATS BUT WE ARE ALL IN THE SAME WATER!  KEEP BAILING- KEEP PADDLING-KEEP PRAYING  

THE DREAM IS STILL ALIVE

THIS WEEKEND BEGINS MORE HOPEFUL THINKING FOR THE CENTER. I HAVE A MEETING TO ATTEND TOMMORROW WHERE THE CENTER FOCUSES ON "RDI "  WHICH  IS A RELATIONSHIP BASED LEARNING FOR OUR KIDS. A FEW PIECES OF TEXT THAT WAS SENTTO ME IT SEEMS VERY SIMILAR TO WHAT I HAVE BEEN FORMULATING  N MY HEAD FOR YEARS--ALSO THE TARGET AGE IS MIDDLE SCHOOL WHICH IS AMAZING BECAUSE SO MANY OF THE RECENT PROJECTS ARE HOHNED IN ON YOUNGER CHILDREN  ITS GREAT TO SEE THAT FINALLY A FEW PEOPLE ARE REALIZING THAT THE OLDER KIDS ARE NOT LOST CAUSES--AS A MATTER OF FACT I ACTUALLY BELIEVE THAT SOME OF OUR KIDS  ARE JUST GETTING TO THE POINT OF BEING ABLE TO ABSORB AND ACCEPT SOME ACADEMIC CHALLENGES WHEN THEY GET THRU THEIR PUBERTY--IF YOU THINKABOUT IT WE ARE ALL SO ANXIOUS TO GET OUR KIDS OUT THERE AND IN THE MIX WITH REGULAR KIDS AT A YOUNGER AGE  THAT I THINK WE MISS ALL THE QUES THEY GIVE US WITH BEHAVIORS TANTRUMS AND REFUSAL TO CO-OPERATE --TRYING TO TELL US THAT THEY ARE HAVING A HARD ENUF TIME TRYING TO DIGEST JUST BEING ABLE TO COPE WITH ALL THE OTHER STUFF SCHOOL THROWS AT THEM. THE MORE I THINK ABOUT THIS AND THE MORE I  WRTIE ABOUT IT AND REFLECT ON MY EXPERIENCE WITH MY SON IT MAKES SENSE . OUR KIDS HAVE TO UNDERSTAND THE DYNAMICS OF BEING IN A STRANGE PLACE WITH STRANGE PEOPLE WITH STRANGE SIGHTS,SOUNDSAND SMELLS --THEY ARE PULLED AWAY FROM EVERYTHING THAT FEELS SAFE AND FAMILIAR TO THEM AND THEN WE TRY TO THROW AL THIS ACADEMIA AT THEM --HOW CAN THEY COPE??? THEY THROW A FIT AND THEN WE ARE UPSET BECAUSE THEY DONT FIT IN AND THE "REGULAR" CLASSROOM  IS TOO CHALLENGING AND ALL ALONG WE KNEW THEY WERE AUTISTIC  HOW DARE WE EXPECT SO MUCH OF THEM,??? MY THEORY IS THAT IT TAKES OUR KIDS POTENTIALLY YEARS TO ACCLAMATE  TO NEW SITUATIONS AND UNTIL THEY FEEL SAFE THEY CANT POSSIBLY ASBORB ACADEMICS MUCH LESS LEARN THINGS LIKE HOW TO SIT APPROPRIATELY IN A CLASSROOM , HOW TO MAKE IT THRU LUNCH WITH OUT LOOSING THEIR HEAD  AND OH MY GOD WHAT ABOUT THAT STRANGE BATHROOM ???   HOW CAN THEY POSSIBLY FIGURE OUT 2+2 WHEN THEIR HEADS ARE BURSTING WITH ALL THE SOCIAL QUES AND RULES SCHOOL REQUIRES??

SO THINK ABOUT THIS DO WHAT YOU CAN AND CERTAINLY CHALLENGE YOUR CHILD BUT LIKE WITH MY SON  I AM JUST NOW SEEING HIS ABILITY TO GRASP AND EMBRACE  ACADEMICS  BETTER THAN I HAVE IN ALL THE YEARS HE HAS SPENT IN SCHOOL --  PERHAPS WE ALL NEED TO STEP BACK A BIT AND GIVE OUR CHILD THE ABILITY TO SHOW US WHAT THEY NEED ----  SURE IT WILL BE IN CODE    BUT MOST OF US SPEAK IN COIDE TOO!!!!!

THANKS POLLY!!!

WELL THANKS TO ONE OF MY MOMS WHO READS THE JOURNAL SHE SENT ME THE ACTUAL STORY ABOUT "HOLLAND" SO IF YOU ARE INTERESTED IT IS BELOW:

Welcome to Holland By Emily Perl Kingsley; Illustration by Shiju George  

<PAGE 1> I am often asked to describe the experience of raising a child with a disability - to help people who have not shared this unique experience, to understand it, to imagine how it would feel.

It's like this.

When you're going to have a baby, it's like planning a fabulous vacation - to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. Michelangelo David. The Gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean, Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around. And you begin to notice that Holland has windmills. And Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy. And they're all bragging about what a wonderful time they had there.

And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain will never, ever go away. Because the loss of that dream is a very, very significant loss. But if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things. About Holland.