Living with Asperger's Syndrome

HI, MY NAME IS AXELLE, I HAVE 2 WONDERFUL CHILDREN ONE IS CONSIDERED LIKE A GIFTED CHILD AND MY SON IS CONSIDERED LIKE PDD AND HAS A PVL (PERIVENTRICULAR LEUKOMALACIA). WE HAVE SO MUCH DIFFICULTIES WITH THE MEDICAL AREA THAT I DO NOT WISH THAT TO ANYBODY. AT 6 MONTHS OF AGE, I BEGIN TO SEE SOME DIFFERENCE IN MY SON’S DEVELOPPEMENT AND SEEK FOR MEDICAL ADVICE, BUT DOCTORS SAID SOME CHILDREN ARE SLOWER THAN OTHER.

AT 8 MONTHS, WE MOVE TO UK, WE ARE FRENCH AND IT WAS PRETTY DIFFICULT TO BE UNDERSTOOD. FINALLY AT 18 MONTHS AND I DON’T KNOW HOW MANY DOCTORS,THEY DECIDED TO HELP US. MY SON WAS UNABLE TO SIT, TO ROLL OVER TO WALK AND TO EAT SOLID FOOD, HE BEGAN TO BANG HIS HEAD OVER THE WALL AND WE PROTECTED EVERY SINGLE ROOM AND HIS BED. HIS HEAD BEGAN TO GROW AND GROW TOO MUCH AND THAT’S FOR THIS REASONS, DOCTORS AGREED SOMETHING WAS WRONG. THEY DID BLOOD TEST AND UNBELIEVABLE, THEY LOST THE BLOOD TEST AND DECIDED TO REDO THE TEST AND AND A CHROMOSOME TEST AT THE SAME TIME THEY SHOT HIM AGAIN AND TRIED TO HAVE SOME BLOOD FOR ONE HOUR, BECAUSE THE FIRST TIME THEY SHOT HIM 8 TIMES BEFORE FOUNDING A VEIN ON HIS FOOT.

THE SECOND TIMES, MY SON WAS SO TENSE THAT THE BLOOD FALL DROP BY DROP. FINALLY, THEY FOUND NOTHING AND WERE DISAPPOINTED BECAUSE THEY WERE SURE IT WAS GENETIC AND SAID “YOUR SON IS A MYSTERY”. WONDERFUL, ISN’T IT EXACTLY, WHAT WE WANTED TO HEAR. AFTER THEY DID DEVELOPMENTAL TESTS AND SURPRISE, THEY FOUND THAT MY SON HAS A DEVELOPMENTAL DELAY AND REGISTERED HIM FOR TEACCH. BUT, THERE WAS NOT ENOUGH PERSONS TO BEGIN FOR THIS YEAR AND SAME THING FOR THE DEVELOPMENTAL TEAM THAT WE SAW JUST TWICE.

AFTER THAT, WE MOVE TO THE USA, FOR PROFESSIONAL REASON, MY SON WAS 32 MONTHS OLD AND WASN’T ABLE TO SIT MORE THAN 6 SECONDS, WAS ABLE TO WALK ALONGSIDE FURNITURE FOR FEW SECONDS, BUT WAS VERY UNSTABLE, AND WAS UNABLE TO TALK AND WAS CRYING AND BANGING HIS HEAD AND HAD AWFUL MIGRAINE AND WAS UNABLE TO TOLERATE ANY LOUD SOUNDS OR LIGHTS. WE SAW MY FAMILY DOCTOR IN FRANCE JUST BEFORE THE DEPARTURE, WHO WAS VERY WORRIED AND GAVE US A PAPER ASKING TO DO A SCANNER AND OTHER EXAMS, YES I FORGOT TO TELL YOU IN UK, WHEN I ASKED FOR A SCANNER THEY LAUGH AT ME SAYING EVERY BOY IN UK HAVE A BIG HEAD, INCREDIBLE, ISN’T IT.

WHEN WE ARRIVE IN THE USA THE PEDIATRICIAN, SAID TO US THAT WITH THE SYMPTOMS THAT SHE COULD OBSERVE, SHE THOUGHT MY SON HAD A BRAIN TUMOR AND WE NEEDED TO BE PREPARED FOR HIS DEATH SHE GAVE HIM 3 WEEKS TO 3 MONTHS TO LIVE. WE WERE TOTALLY DESESPERATE, YOU CAN IMAGINE. THIS DOCTOR LEFT FOR VACATION AND ASKED FOR ONE OF HIS COLLEAGUE TO TAKE OVER FOR THE MRI AND OTHER TESTS. HE COULDN’T TAKE US IMMEDIATLY BECAUSE HE NEEDED TO ASK FOR MY SON’S FILE IN UK AND SEE ABOUT THE INSURANCE, WE DIDN’T CARE FOR THE INSURANCE AND WAS READY TO TAKE ANY SINGLE LOANS, BUT HE INSISTED TO CONTACT THE INSURANCE AND PREPARED EVERY SINGLE PAPER NEEDED. WE MADE AN APPOINTMENT WITH HIM FOR THE DAY AFTER, OUR SON NEEDED TO BE HOSPITALIZED TO DO EVERY SINGLE TEST AND TO NOT TRAUMATIZE HIM TOO MUCH, WITH A VERY HEAVY HEART, WE PREPARED A BAG FOR HIM AND ONE HOUR BEFORE GOING, WE RECEIVED A PHONE CALL FROM THE MEDICAL CENTER SAYING THEY WERE SORRY THE PEDIATRICIAN HAD A FAMILY EMERGENCY AND THEY WERE TO CONTACT US LATER FOR A NEW APPOINTMENT. BUT, GUESS WHAT, HE NEVER CALL BACK.

THE DAY AFTER THAT MY SON HAD AN EAR INFECTION, WE CAME BACK AND SAW THE DOCTOR CAME BACK, BUT WAS ACTUALLY TOO BUSY TO TAKE US AND THE DOCTOR THAT WE SAW FOR THE EAR INFECTION, SAID HE COULDN’T DO ANYTHING FOR US, WE NEEDED TO SEE OUR PRIMARY DOCTOR. 2 DAYS AFTER, I WAS CRYING SO MUCH , I COULDN’T SLEEP, I WAS CLOSE TO MY SON’S CRIB, LOOKING AT HIM SLEEPING WITHOUT KNOWING IF MY SON WOULD BE ALIVE THE DAY AFTER. WE DECIDED TO SEE ANOTHER DOCTOR AND WHEN SHE HEARD OUR STORY AND SHE SAW OUR DISTRESS SHE SAID THE BRAIN TUMOR WAS A POSSIBILITY, BUT SHE WAS ANGRY ABOUT THE OTHER DOCTOR AND SHE SAID WE COULDN’T KNOW BEFORE THE MRI AND SHE GAVE A PAPER FOR THAT. AT THE MEDICAL CENTER, THEY SAID WE NEEDED TO WAIT FEW DAYS TO MAKE AN APPOINTMENT THE TIME THEY SENT ALL THE PAPER TO CHILDREN’S HOSPITAL. 3 DAYS AFTER WHEN WE MADE THE CALL THEY SAID THEY DIDN’T RECEIVE ANY PAPER, WE WENT TO THE MEDICAL CENTER AND THEY DISCOVERED THEY DIDN’T KNOW THE REASON, IT WAS THE FIRST TIME THAT IT WAS HAPPENING, THEY APOLOGIZED AND SENT ANOTHER PAPER.

WE DID THE MRI, IT WAS VERY DIFFICULT FOR MY SON LIKE HE WAS MOVING TOO MUCH BECAUSE HE WAS SCARED THEY TIED HIM UP ON A STRETCHER AND BOCKED HIS HEAD WITH A SPECIAL TRAP AND AFTER THAT PUT HIM ASLEEP. THEY SAID WE COULD HAVE THE RESULT BETWEEN 3 TO 5 DAYS IF EVERYTHING WAS ALRIGHT. WE CALLED THE MEDICAL CENTER EVERY DAY, 5 DAYS PASSED AND THEY HAD NO NEWS, WE WERE SO WORRIED AND WE HAD FINALLY THE RESULT 9 DAYS AFTER THE MRI AND WHEN WE ASKED WHAT IT WAS. THEY SAID THEY HAD NO IDEAS, THERE WAS NOT A TUMOR BUT THERE WAS SOMETHING WORRISOME ABOUT THE WHITE MATTER AND WE NEEDED TO MAKE AN APPOIMNTMENT WITH A NEUROLOGIST.

WE MADE AN APPOINTMENT AND THERE WAS NO PLACE UNTIL ONE MONTH. WE LOOKED FOR INFORMATIONS ABOUT THE BILATERAL VENTRICULAR AREA OF THE BRAIN AND THE WHITE MATTER, BUT WHAT WE FOUND WASN’T HELPFUL AND EVEN WORSE. WHEN WE SAW THE NEUROLOGIST, GUESS WHAT’S HAPPENED, AGAIN. HE SAID HE DIDN’T RECEIVE THE MRI, JUST THE RESUME FROM THE RADIOLOGIST BECAUSE THEY SENT THE MRI AT THE WRONG SERVICE (AND, OF COURSE, IN1 MONTH, HE HAS NO TIME TO GET IT,2 YARDS AWAY,P.S. WE DISCOVERED THAT WHEN WE ASK TO HAVE THE MRI) HE EXPLAINED TO US BY SHOWING A DIAGRAM AND WHAT AN EXPLANATION I CAN JUST CITED AND IF SOMEBODY KNOWS WHAT THIS MEAN PLEASE LET ME KNOW “INCREASE IN INTENSITY SEEN IN BILATERAL PERIVENTRICULAR ZONES, BOTH POSTERIORLY AS WELL AS ALONG THE LATERAL VENTRICLES. WHITE MATTER BULK IS NORMAL. PERIVENTRICULAR WHITE MATTER INTENSITY IS, HOWEVER, WORRISOME FOR A PERIVENTRICULAR WHITE MATTER INJURY SUCH AS WOULD RECUR IN THE PERINATAL TIME PERIOD.”

IT WAS EXACTLY WHAT THE RADIOLOGIST WRITTEN, THE ONLY THING DIFFERENT THAT HE SAID TO US IT WAS THAT WAS CERTAINLY HAPPENING DURING MY PREGNANCY, BUT IT WASN’T MY FAULT. EVEN, KNOWING THAT I FEEL SO GUILTY EVEN IF I FOLLOWED EVERY SINGLE ORDER FROM MY GYNECOLOGIST MY OWN BODY ATTACKED MY BABY LIKE IT WAS A VIRUS AND THAT’S SO HARD TO ACCEPT. AFTER THE MRI SOME MIRACLES HAPPENED, MY SON WAS ABLE TO SIT, WALK, AND WAS LAUGHING AND SAID SOME WORDS AT 33 MONTHS AND POTTY TRAINED AT 35 FOR THE DAY, BUT THE POTTY TRAINED AND THE FEW WORDS DISAPPEARED 3 WEEKS AFTER. MY SON BEGAN TO SWIM AND WAS UNFEARFUL IN THE WATER AND MORE IMPORTANTLY HIS MIGRAINE DISAPPEARED AND HIS BANGINGS.

WE SAW AGAIN THE NEUROLOGIST, BUT HE NEVER ASKED FOR THE MRI AND WRITE ON A PAPER PVL WHEN WE ASKED WHAT IT WAS, HE SAID IT WAS WHAT HE HAD AND WHEN HE SAW OUR FACES, OH ! I FORGOT TO TELL YOU I CHANGE MY DIAGNOSIS. WITHOUT ANYMORE EXPLANATION. THIS DAY, WE DECIDED TO CHANGE AND FIND ANOTHER NEUROLOGIST, BUT WHEN WE ASKED TO CHANGE EVERYBODY GAVE US HIS NAME SAYING HE WAS THE BEST IN THIS AREA. HE BEGAN TO GO IN A WONDERFUL SCHOOL, AND DID A LOT OF PROGRESS EXCEPT TALKING AND THEY ASKED FOR A NEW AUDITIVE TEST, BUT NOBODY WANTS TO DO IT BECAUSE MY SON CRIES AND SCREAMS EVERY TIME HE IS IN A MEDICAL ENVIRONMENT. FEW MONTHS, AND WHEN MY SON WAS 5 YEARS AND A HALF, WE MOVED BECAUSE OF MY HUSBAND’S JOB (NO CHOICE, UNFORTUNATELY) HE WENT TO A SPECIAL EDUCATION CENTER, THE FIRST MONTH WAS ALRIGHT EXCEPT THAT WHEN I HAD THE IEP MEETING THEY DIDN’T SEE HE HAD BEFORE OCCUPATIONAL THERAPY, SPEECH THERAPY AND ADAPTED PHYSICAL EDUCATION AND THAT WASN’T POSSIBLE FOR THE REST OF THE YEAR AND THEY NEEDED TO SEE IF IT WAS POSSIBLE FOR NEXT YEAR. THE PRINCIPAL WASN’T THERE BECAUSE OF A SURGERY AND MY HUSBAND AND I DECIDED TO WAIT AND MAKE AN APPOINTMENT TO RESOLVE THESE PROBLEMS.

UNFORTUNATELY HIS TEACHER LEFT FOR PERSONAL REASON AND MY SON HAS HAD 5 DIFFERENT TEACHER BEFORE HAVING A REPLACEMENT. EVERY MORNING WE DROPPED MY SON OFF AT SCHOOL TO BE ABLE TO MEET THE TEACHER AND ASKED IF EVERY WAS OK, EVERY TIME WE SAW HER SHE SAID ” EVERYTHING WAS GREAT” BETWEEM THIS TIME MY SON WENT TO THE HOSPITAL FOR A SCARLET FEVER IT WAS FOR MEMORIAL DAY AND HIS FEVER WASN’T GO DOWN EVEN WITH TYLENOL.

WHEN WE WENT TO THE HOSPITAL HE WAS CRYING SO MUCH THAT THE DOCTOR DECIDED IT COULD BE A MENINGITIS, HE HAD NO SIGN OF IT NO HIGH FEVER, HE WAS LOOKING NORMALLY AT THE LIGHT AND HAD NOT STIFFNESS BUT HE WASN’T TALKING AND WAS CRYING (NORMAL, MY SON DOESN’T TALK). THE DOCTOR DECIDED TO DO AN X-RAY TO BE SURE IT WASN’T A PNEUMONIA (WITHOUT COUGHING OR HAVE PROBLEM BREATHING IT SEEM SLIGHTLY POSSIBLE) EVERYTHING WAS OK AND A SCANNER, GREAT WE NEEDED ONE (THEY FOUND NOTHING WRONG EXCEPT THE PVL). THE DOCTOR SAID, SHE HESITATED FOR A LUMBAR PUNCTURE (LP), BUT IF IT WAS HIS NORMAL BEHAVIOR IT WASN’T NECESSARY SHE SAID WE NEED TO WAIT 6 HOURS IN OUT-PATIENT AND IF THE FEVER WAS GONE IT WOULDN’T BE NECESSARY, BETWEEN THIS TIME IT WAS THE END OF HER SERVICE AND WE WAITED FOR A FAMILY DOCTOR WHO WANTED TO DO A LP AND HOSPITALIZE MY SON.

I SAID I DIDN’T UNDERSTAND HE HAS NO FEVER AND HAS NO SIGN OF A MENINGITIS, SHE SAID HE WAS FUSSY AND SEEMED SICK TO HER AND WAS ALMOST ASLEEP AND NON RESPONSIVE I SAID IT WAS NORMAL IF IT WAS CRYING AND WAS SCARED OF MEDICAL AREA AND IF IT WAS HALF ASLEEP IT WAS BECAUSE THEY SEDATE HIM FOR THE SCANNER. SHE SAID “NO,NO, HE HAS NO SCANNER I SAY YES HE HAS ONE I WAS SURE BECAUSE I WAS WITH HIM SHE LEFT AND ASKED AND SHE DISCOVERED HE HAS ONE, IT WASN’T WRITE ON HIS FILE BECAUSE THE PREVIOUS DOCTOR WROTE THAT BUT AFTER DECIDED TO WAIT BUT BETWEEN THIS TIME SOMEBODY TAKE US AND WHEN SHE CAME TO KNOW HOW MY SON WAS SHE DISCOVERED MY SON WAS IN THE SCAN ROOM, AND SHE DIDN’T WRITE IT ON HIS FILE.

THE SECOND DOCTOR INSIST FOR LP, I EXPLAIN TO HER WHAT THE PREVIOUS DOCTOR SAID, SHE DIDN’T BELIEVE ME. I REFUSED THE LP AND SHE SAID HE HAD A PVL, HOW THIS THING WAS HAPPENING, IT FELL ON HIS HEAD. I STAYED CALM AND POLITE WHAT WAS DIFFICULT AND SAID NO, IT’S HAPPENED DURING MY PREGNANCY AND MY SON DIDN’T FALL. AFTER, SHE WAS THREATENING ME THAT IF I REFUSE TO DO THE LP, MY SON WOULD STAY FOR AT LEAST 2 WEEKS, SHE CAN PROMISE ME ABOUT THAT, IF THAT’S NOT A THREAT I DON’T KNOW WHAT IT IS. AND SHE SAID IF I ACCEPT TO DO THE LP HE COULD GO OUT IMMEDIATELY OR VERY QUICKLY, WHEN I ASKED WHAT WAS QUICKLY SHE SAID 5 TO7 DAYS AT LEAST BECAUSE SHE WAS SURE IT WAS A MENINGITIS.

I REFUSE AND SHE SAID IF I WASN’T HAPPY I COULD TAKE MY SON AND GO HOME I SAID TO HER I CAN GO HOME AND SEE MY PEDIATRICIAN TOMORROW, SHE SAID, OF COURSE I WAS FREE, I JUST NEED TO SIGN A PAPER TO SAY I WANT TO GO AGAINST MEDICAL ADVICE I SAID AGAINST MEDICAL ADVICE YOU SAID TO ME AND THE NURSE TOO I CAN GO. I ASK AND IF I GO WHAT’S HAPPENED, SHE LEFT TO ASK AND COME BACK, SAYING IF I GO NOW THEY NEED TO DO AN ENQUIRY FOR ENDANGERED CHILD I SAID TO HER I DON’T WANT TO GO, BUT I DON’T WANT THE LP BECAUSE THE PREVIOUS DOCTOR SAID THERE WAS SOME POSSIBLE COMPLICATIONS WITH A LP LIKE DO NOT BE ABLE TO WALK OR OTHER PROBLEMS IT WAS RARE BUT POSSIBLE.

THE DOCTOR WAS STUNNED, SHE SAID NO NO THAT’S NOT POSSIBLE, AND WHEN I SAID IT’S WHAT THE PREVIOUS DOCTOR SAID, AFTER A WHILE SHE AGREED THERE ARE SOME RISKS, BUT FOR A CASE LIKE THIS IT IS JUST AN INCONVENIENT, I ANSWERED THIS IS MY SON. AND SHE SAID YOU KNOW WITH A PVL SOME CHILDREN AREN’T ABLE TO WALK FOR A LONG TIME, HE COULD FINISH ON A WHEELCHAIR ANYWAY. THEY GAVE HIM GENTAMYCIN, VANOMYCIN AND ERITHROMYCIN AND HOSPITALIZED MY SON FOR 2 DAYS BECAUSE THE BLOOD REVEALED A STAPHILOCOCCUS AERUS CERTAINLY BECAUSE OF A CONTAMINATION AND THEY NEED TO REDO THE TEST TO BE SURE AND DO NOT PREFER TO SEND HIM HOME BECAUSE THEY DO NOT WANT TO TRAUMATIZE HIM, PRETTY FUNNY! AFTER 2 DAYS 9 SHOTS FOR BLOOD TEST AND IV THEY SENT US HOME WITH WRITTEN ON THE PAPER SCARLET FEVER AND EAR INFECTION.

OUR PEDIATRICIAN,WHO HE’S TRULY AMAZING EXCUSE HIMSELF ABOUT THE HOSPITAL MY HUSBAND CALL HIM VIA A FRIEND WHO HAS HIS PHONE AND SAID TO US THAT IN HIS ALL CAREER HE NEVER SAW ANYTHING LIKE THAT. AND, OF COURSE, IT’S FOR MY SON. OUR PEDIATRICIAN ALERT THE HOSPITAL’S BOARD ABOUT THAT AND WE ARE WAITING. AND IT’S NOT ALL THE LAST DAY OF SCHOOL WE RECEIVED THE SCHOOL REPORT FOR MY SON AND SAW HE REGRESSED IN ALL AREA AND WAS UNABLE TO EAT,HOLD A PENCIL, A BALL OR ANYTHING. HE WAS DOING ALL OF THIS BEFORE, AND EVERY SINGLE DAY WE WERE ASKING TO HIS TEACHER HOW MY SON WAS DOING AT SCHOOL AND EVERY DAY SHE SAID EVERYTHING WAS GREAT.WE DECIDED TO MAKE AN APPOINTMENT WITH THE PRINCIPAL AND IT WAS PERFECT BECAUSE WE REGISTERED OUR SON AT SUMMER SCHOOL, WE DECIDED TO WAIT ONE WEEK BECAUSE THE PRINCIPAL WAS VERY BUSY AND SHE JUST RETURN FROM A SURGERY, AND GUESS WHAT’S HAPPENED 3 DAYS AFTER THE BEGINNING OF SUMMER SCHOOL, MY SON COME BACK TO SCHOOL WITH A STAPLE STUCK VERY DEEPLY ON HIS HEAD AND A SECOND TRACE WITHOUT A STAPLE, I HAVE DIFFICULTY TO TAKE IT OFF AND WHEN WE WENT TO SCHOOL THEY HAVE NO EXPLANATION. WE TAKE HIM HOME AND WAIT UNTIL AUGUST TOCALL THE DISTRICT AND FIND A NEW SCHOOL.

WE HAVE SOME FRIENDS WHO WAS IN THE SAME SITUATION AND THEY FOUND A WONDERFUL SCHOOL WE HOPE IT WOULD BE POSSIBLE FOR MY SON TO GO OVER THERE. BUT, FORTUNATELY, THE REGRESSION HAPPENED ONLY AT SCHOOL. MY SON IS GREAT NOW, HE IS WALKING, RUNNING BETTER AND BETTER, HE IS BABBLING ACTUALLY AND WE HOPE HE WOULD BE ABLE TO TALK ONE DAY, SOON IS BETTER, HE CLIMBS EVERYWHERE AND HAS NO DELAYS FOR SILLY THINGS HE IS POTTY TRAINED SINCE 1 WEEK. HE BEGINS TO DRAW AGAIN, HE LOVES TO SWIM AND SAID BYE-BYE TO HIS SAFETY VEST, LAUGHS A LOTS, AND HAS NO MORE HEADACHES. OUR PRIMARY CONCERN NOW IS TO FIND A GREAT SCHOOL WITH O.T. , SPEECH THERAPY AND A.P.E., BECAUSE HE IS ALMOST 6, AND WE HOPE IT’S NOT TO LATE FOR HIM TO PROGRESS.

WHAT I CAN SAY, OR MORE EXACTLY WRITE TO EVERY PARENT WHO STRUGGLES OR DO NOT KNOW WHAT TO DO DO NOT LOSE HOPE. MY HUSBAND AND I, LOVE SO MUCH OUR 2 CHILDREN, WE FOUGHT BEFORE, WE FIGHT FOR THEM AND WE WILL FIGHT UNTIL THE LAST DAY BECAUSE WE HAVE 2 WONDERFUL LITTLE ANGELS, AND JUST THAT IT’S ENOUGH TO NOT STOP TRYING TO CHANGE THE WORLD AND HELP OTHERS TO ACCEPT ANY DIFFERENCE NOT LIKE A FATALITY, BUT LIKE A CHALLENGE. I HOPE THERE IS NOT TOO MUCH MISTAKES, BECAUSE I’M FRENCH. BUT IF YOU HAVE ANY SUGGESTIONS WE ARE IN LOS ANGELES AREA AND HOPE TO BE POSTED.:-)