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