MAYBE NOT THE POPULAR OPINION

k at the risk of upsetting a few of you i have just a little different take on the controversy over the sad death of this little boy---
once again i commend all of you who are more than diligent about exploring and offering any and all therapies that may give our kids a better quality of life-- and as for people using this news as a way to discourage or prevent any of us from doing what we decide is best for our kids is bull-pucky
i think what i am saying is: that is why our country is so great because it provides for our personal freedom to choose
and we all have to be vigilant in preserving those rights

i just have such a sick feeling in my heart because we are all searching for what works for our family and it does turn to desperation whether we want to admit it or not---
sometimes the time that we think is running out actually becomes the true test because those things that we arent sure about will be proven or fail
so please dont beat yourselves up-- believe that what you choose to do is right. my son is 18 and i cant even begin to tell you how many different soutions,therapies or cures have some down the pike in the time i have been dealing with autism and most of them have gone by the wayside. one thing i am fairly sure of {i might have said this before but i think it bears repeating} is even if there is a CURE tommorrow for autism those who are already afflicted will probably have to live the rest of their lives with autism. perhaps more easily with the therapies we are now discovering but the bottom line is we dont know if these therapies will be permenent or only work for awhile or  will be a regiment that has to be done for the rest of their lives. keep perservering but remember that quality of life is just as important and our kids deserve to be happy and kids and to be as typical as they can be and sometimes instead of being hauled from one doctor or another or to one therpay or another sometimes they might just need you to be with them and play with them and be autistic once in awhile.
unfortunately we are all in a hurry-- and its just not going to be a pill to fix this
just like we cant fix society accepting our kids
i wish all of you the best with your path and hope that there will come a day when there ont be a need for an autism support group.
i love you all and what you do
cindy

CHELATION DEATH

  i know many parent are doing chelation therapy and all parents are trying to fdo what the think is right but please please be careful; i know we wish there was a magic "cure" there isnt right now so therapies while they may help in most cases dont always work for all kids and we have to make the right choices for our families in any case i wanted to post this   Dear AutismLink subscribers:

I hate to report sad news, but this story needs to be told.  Today, a story will come out in the news about a family whose five year old child with autism died while undergoing chelation therapy.  The family, from the Pittsburgh area, was seeing a "doctor" who claimed to follow the DAN! protocol.  (Details are sketchy at this time -- we are unsure of the doctor's qualifications.  We will keep you posted.)

The child died in the doctor's office, while undergoing therapy.

Please, before you try any new therapies, we urge you to research the physician, the methods, and the safety.  Some of these therapies are quite dangerous.  We're not telling you what to do, we're just urging you to use caution.

We all do what we think is best for our children, and sometimes we are desperate.  While we've heard stories of chelation success, it is definitely a dangerous process.

Our children are so very fragile, and we fight for them as best we can with whatever we think will work.  Please keep this family in your thoughts and prayers.

Sadly,

Cindy Waeltermann
AutismLink Director

  Cindy from DAKS OPEN DOOR

SOME ADVICE TO OTHERS

I KNOW THAT IT IS EASY TO LOSE YOUR MIND QUICKLY DAKOTAS WHEN HE WAS BARELY ABLE TO SEE OVER THE KITCHEN SINK HAD AN OBESSESSION WITH THE DISHCLOTH BEING HUNG OVER THE FAUCET AND I WOULD FORGET CONSTANTLY WHEN I WOULD LEAVE THE KITCHEN AREA HE WOULD START IN SCREAMING AND YELLING AND TANTRUMING IT DROVE ME NUTS-- I REALIZED THAT HE WAS TRAINING ME MORE THAN I WAS TRAINING HIM  BUT EVENTUALLY I ALSO NOTICED THAT THE WINDOW WHICH FACES EAST LET A BRIGHT LIGHT IN ON THE CHROME AND IT WAS THE SUNLIGHT REFLECTING OFF THE SPIGOT THAT IRRITATED HIM SO FROM THEN ON I KEPT THE SHADE DOWN IN THE MORNING     YOU WILL ALSO REALIZE THAT ONE BEHAVIOR WILL REPLACE ANOTHER SO WHEN YOU SOLVE OR STOP HIM FROM SOMETHING DRIVING YOU NUTS HE WILL SUBSTITUTE WITH ANOTHER-- AS HE GETS OLDER IT WILL BE FINDING APPROPRIATE BEHAVIORS THAT HE CAN GET SOME SATUISFACTION THAT DOESNT SEEM OUT OF PLACE OR AGE APPROPRIATE. LIKE WHEN DAK WAS SMALL WE GAVE HIM DOG TOYS TO USE FOR SENSORY STIMULATION --BRIGHT COLORS AND GREAT TEXTURES SUGGESTED BY THE OT AT KAISER SO WHEN HE GOT OLDER WE HAD TO FIND THINGS HE COULD USE THAT WERE BABY-ISH SO WENT GRADUATED TO A LEATHER  STRAP ON HIS WRIST I GUESS YOU GET THE IDEA ' THE MOST IMPORTANT THING I CAN TELL YOU OFF THE START IS BREATHE AND TAKE TIME TO OBSERVE HIM WHEN HES CALM  WHEN HES AT HIS BEST AND CAPITALIZE ON THAT   FOR LANGUAGE  I HUGHLY RECOMMMEND SIGN--- JUST USING A FEW SIGNS CAN MAKE A WORLD OF DIFFERENCE IN COMMUNICATION-- SOME THINK IT HINDERS LANGUAGE BUT I DISAGREE A LARGE PART OF  OUR CHILDRENS FRUSTRATION IS FROM INABILITY TO TALK   SIGN ALLOWS THEM A SAFE HAVEN TO COMMUNICATE AND KEEP TALKING TO HIM  HE GETS IT WHETHER HE CAN ACKNOWLEDGE IT OR NOT-- KEEP TALKING BELIEVE ME EVEN WHEN YOU THINK HES NOT PAYING ATTENTION --HE IS!!!!!!!

2nd OPINION

MONDAY we went to a second opinion on Dakotas foot   Although  i am not sure that i heard anything more at least i can say that i liked the doctor.                           I THINK WE WILL STILL GO FOR A OUT OF PLAN  ASSESSMENT

THIS DOCTOR SAYS IT COULD BE UP TO A YEAR BEFORE THE SCAR TISSUE ALLOWS THE MUSCLES AND TENDONS TO HEAL AND LOOSEN HIS TOES AND HE AT LEAST SAID THERE WERE THING THAT COULD BE DONE-- HE ALSO ORDERED A NIGHT CAST TO HELP STRETCH HIS FOOT AND WANTS HIM TO WEAR AN ARCH SUPPORT TO HELP THE BIG TOE.

WE WILL CONTINUE PHYSICAL THERAPY AND HAVE A RETURN APPOINTMENT IN 5 WEEKS --SO AT LEAST I FEEL LIKE HES DOING SOMETHING--HIS NAME IS FRED ANDERSON IN PODIATRY AT KAISER IN THE NEW FACILITY AT VINEYARD IN ONTARIO. MARY ANZIANO HAS BEEN A DREAM AS WELL --SHE HAS ASSISTED ME ANYTIME I HAVE ASKED HER  SHES IN FONTANA AND IS A NURSE PRACTIONER. KUDOS TO BOTH

FOR NOW DAKOTA  CONTINUES TO COMPLAIN THATHIS FOOT AND TOES HURT AND IT SEEMS TO BE THE HEEL ,THE BALL AND THE TOES I JUST CANT BELIEVE THAT ALL OF THIS IS HAPPENING   DOESNT HE HAVE ENUF TO DEAL WITH --WITHOUT HAVING SOMETHING WRONG WITH HIS FOOT AND LEG???

IT HAS  STRESSED  ME OUT AND BEEN SO EMOTIONAL FOR DAKOTA . TWISTING HIS HAIR CHEWING TOWELS BEYOND RECOGNITION  AND I CANT TELL YOU HOW MANY NIGHTS WE SAT UP AND HE CRIED ABOUT HIS FOOT NOT BEING RIGHT AND THAT HE WAS GONNA BE CRIPPLED FOR THE REST OF HIS LIFE  AND ALL OF IT WAS SET OFF BY A BEHAVIOR BEFORE HE BROKE DOWN ABOUT FOOT

SO  A LOT OF THE STUFF WE HAVE BEEN GOING THRU HAS BEEN TRIGGERED BY THIS STUPID ACCIDENT-- OOOOHHH LET ME SCREAM!!!

 

VIEW ARCHIVES

The outline for the Center is in the march archives   dated 3/24              for anyone who would lke to read about it                                                                             

I will be adding more details of ideas later!

REPORT ON THE PICNIC

Hello

I hosted our first picnic/potluck this past weekend In case you havent read before I have this vision for a Center for Autism  to intially start in the Inland Empire. It would consist of any and all services for anyone seeling help or asistance. I have my vision posted on a past exerpt  . This picnic was a "lets get started and  see what kind of interest is out there" type of get -to-gether. There were about 30 adults and a bunch of kids. there were 3 proffessors from 3 different colleges and 3 professionals who have holistic and vitamin supplement businesses. Although i would have liked a stronger attendance i continue to be encouraged as i have had several emails since the picnic with more families expressing interest and involvement for the next meeting which will be toward the end of september.

i had a questionaire for families to fill out and i talked about my ideas and things that we will need to get started --my commitment before the next meeting is to get answers about the 501 non profit status  and seeking a permenent  place and more funding ideas plus trying to get a "board or streering committee" formed.

i will be doing a few smaller meet and greet meetings with a few that were not able to attend the picnic -most of which are out of the immediate area like orange county and the high desert--

As for the picnic  we all had a great time and it was rather casual and relaxed lots of good  company , good food and great weather                                                                      Anyone who has any inquiries , questions or would like more information or a small meeting to find out about my dream and reality for all families can email me at              daksopendoor@aol.com

Thanks for viewing  my journal!  

SLEEP ISSUES

IT IS ACTUALLY THE  3 RD OF AUGUST  BUT I HAVE AN EXERPT   { FROM JULY 30TH}  THAT I SENT ANOTHER FRIEND ABOUT THE MINOR  AND I DO SAY MINOR SLEEP  ISSUES I HAVE HAD WITH DAKOTA. SINCE THEN  I HAVE HAD ANOTHER GO AROUND WITH HIM  2 DAYS LATER  AND UPON REFLECTION  OF THE  INCIDENTS  I THINK I AM GETTING A BIGGER PICTURE OF WHAT IS HAPPENING!!!

HE HAS BEEN BED BOUND FOR 3 MONTHS AND I THINK THAT THAT SIMPLE FACT ALONE IS THE TRIGGER FOR HIS SLEEPING PATTERN CHANGE---

HERES THE EXERPT

THE PAST FEW DAYS HAVE BEEN A BIT CHALLENGING FOR ME CUZ DAKOTA IS TRYING TO WALK ON HIS OLD CRIPPLED UP FOOT AND THATS A GOOD THING BUT BECAUSE HES MOVING AROUND HE NEEDS TO BE MONITORED A LITTLE MORE SO HE DOESNT TRIP OR FALL--- AND LAST NIGHT I DONT KNOW WHAT THE HELL WAS GOING ON BUT WE TURNED OUT THE LIGHTS AT 2 AND I DOZED OFF A COUPLE OF TIMES ONLY TO BE WOKEN BY "MOMMY  MOMMY"                             MAN WAS I ON EDGE  FINALLY AT 4 05 I WAKEUP AGAIN TO FIND HES NEVER REALLY GONE TO SLEEP HES CHEWED THE SHEET UP AND HES HUNGRY SHIT-------------- I KNOW I HAVE BEEN LUCKY CUZ WE HAVE NEVER HAD TO MANY SLEEP ISSUES BUT LAST NIGHT PROVED THAT I WAS SPOILED--DAKOTA FOR THE MOST PART IS STILL A 12 HOURS ON AND 12 HOURS OFF BABY AND THAT HAS PRESENTED PROBLEMS BUT ONCE YOU GET THE ROUTINE OF  IT COMES PRETTY EASY. SO ANYWAY I GOT UP GAVE HIM SOME WATERMELON AND TAPIOCA {WHAT A COMBINATION] HAD HIM  GO PEE GAVE HIM A DRINK OF WATER AND HE LAID BACK DOWN AND FELL ASLEEP ALMOST RIGHT AWAY SO I DONT KNOW WHAT WAS BOTHERING HIM  BUT NOW I FEEL BAD CUZ I GOT IRRITATED WHEN I KNOW ITS GOT TO BE HELL FOR HIM INSIDE HIS HEAD WHAT AM  I COMPLAINING ABOUT---ITS SO EASY TO DO THOUGH   TWO DAYS LATER WE HAD ANOTHER GO AROUND  I TRIED TO CHANGE ONE PATTERN SINCE HE HAS BEEN BED BOUND AND HE FLIPPED OUT ON ME  HE SCREAMED AND YELLED AND GRABBED MY ARM AND SAID I AM GOING TO TWIST YOUR ARM !! I HAVE LEARNED THAT THE BEST OPTION FOR ME IS TO GET VERY QUIET AND REMOVE MYSELF FROM IMMEDIATE CONTACT AND JUST WAIT   I KNOW WE DONT ALWAYS HAVE TIME TO DO IT BUT I AM CONVINCED THAT FOR YOUR CHILDS SAKE THE VERY BEST YOU CAN DO IS LET IT RUN ITS COURSE WITHOUT TRYING TO INTERCEDE AND SITTING AND JUST WATCHING HIM AND NOT SAYING ANYTHING WITH LITTLE OR NO REACTION HAS BEEN THE BEST "MEDICINE " FOR DAKOTA TO "DE COMPRESS" .WITHIN 10 TO 15 MINUTES HE RETURNS                              " TO OUR WORLD"     THEN USUALLY A WAVE OF REMORSE OR APOLOGIES COME       "IM SORRY MOMMY"  "I LOVE YOU MOMMY"  THEN DIALOGUE OPENS UP AGAIN AND THE WAVE IS OVER  BUT THIS ONE WENT A LITTLE FARTHER   HE THEN STARTED CRYING BIG TEARS AND TELLING ME HIS FOOT HURT AND WHY DID HE HAVE TO FALL AND WHEN IS IT GOING TO GET BETTER-- TO ME IT WAS A MOMENT OF CLARITY  HIS THOUGHTS AND EMOTIONS WERE ALIGNED   I SEE THESE USUALLY AFTER HE HAS A BEHAVIOR ITS ALMOST LIKE IT BECOMES A TRIGGER FOR HIS BRAIN TO REWIRE.  ALL OF THIS HAS BEEN OCCURRING LATE AT NIGHT AND ITS LIKE THAT IS HIS TIME TO HEAL HIS BRAIN ---{BETWEEN 2AM AND 4 AM}   SO MAYBE WHY OUR KIDS HAVE SOME SLEEP ISSUES IS BECAUSE THE BRAIN IS   RE- WIRING    AT NIGHT  AND OUR KIDS HAVE SUCH ACUTE AWARENESS THAT SLEEPING IS AN INTERRUPTION TO THE HEALING PROCESS--- I DONT KNOW ITS JUST AN OBSERVATION THAT I HAVE MADE FOR OUR SITUATION                                MY MOTHER HAS ALWAYS BEEN ONE WHO IS EXTREMELY AWARE OF HER BODY AND HOW IT FUNCTIONS AND SHE IS NOT AUTISTIC  WHO KNOWS MAYBE THIS IS ANOTHER  THEORY THAT CANNOT BE EXPLORED BECAUSE MOST OF OUR KIDS CANT COMMUNICATE WITH US IN THE TRADITIONAL WAY  BUT THE NEXT TIME YOU ARE HAVING A SLEEP ISSUE AND YOU ARE ON YOUR LAST NERVE   JUST REMEMBER  TO STEP BACK TAKE A BREATH ,LOOK AROUND AND WAIT TO SEE IF YOUR BABY CAN GIVE YOU A CLUE ABOUT WHATS HAPPENING IN THEIR HEAD!!!