Update

TALKING

WHEN MY DAUGHTER , SOPHIA STUDIES FOR HER SPELLINNG TESTS, SHE LOVES TO HAVE ME READ A SPELLING WORD TO HER, SO SHE CAN GUESS THE WORD & SPELL IT 4 ME. IT’S A CHALLENGING, BUT FUN, GAME 4 ME…& SOPHIA HAS A WAY OF MAKING ME LAUGH, SO I REALLY ENJOY IT. LUCKILY IT’S WEEKEND, SO SHE WON’T NEED ME 2 SAY HER WORDS BECUZ ON FRIDAY I LOST MY VOICE. KIND OF FUNNY WHEN THE GIRL WHO CAN’T SPEAK, COMPLAINS ABOUT LOSING HER VOICE! LOL BUT, AS MY MUSIC THERAPIST POINTED OUT, IT SHOWS THAT I HAVE A VOICE TOO LOOSE, SO 3 CHEERS 4 THAT!

BUT ON THE SUBJECT OF TALKING, WHEN I DO TILT TABLE, I COUNT MY KNEE BENDS, SO MY HELPER/ASSISSTANT, ANGIE KNOWS HOW I SAY MY #’S. A WHILE AGO, I COUNTED TO SIX FOR ANGIE, WHILE LAYING DOWN. ANGIE WAS SHOCKED AT HOW WELL I DID! I ACTUALLY INCLUDED MY “S’S” & “T’S.” BUT RECENTLY, WHEN I DID MY KNEE BENDS, I SAID “SIX” & “SEVEN” W/THE LETTER “S” SOUND WHILE STANDING! I FLIPPED OUT! HAVEN’T DONE IT SINCE, BUT IT’S THERE! & NOW I OFTEN ALSO SAY MY “T’S”—THEY JUST SEEM 2 SOMETIMES “POP OUT!” “G’S” ALSO SOMETIMES “POP OUT” WHEN I SAY “GOODMORNING/GOODNIGHT. IT’S ALL VERY EXCITING!

LAST SEASON , I WAS WATCHING AMERICAN IDOL & A CONTESTANT WAS TOLD THAT U BREATHE DIFFERENT LAYING DOWN, & THAT IF SHE PRACTICED LAYING DOWN, IT WOULD BUILD HER BREATH SUPPORT…THAT EXPLAINS A LOT! I SAY “S,” “T,” “G” & OTHER LETTERS THE BEST IF I LAY DOWN. THEN IF I BREATHE BETTER & DIRECT MORE AIR AT MY NOSE, MY NOSE PLUGS, SO I CAN SAY MORE OF THESE LETTERS WHILE STANDING, OR WHILE IN MY CHAIR!

MY MUSICAL TRANING REALLY HAS HELPED ME TOO! THERE R LETTERS I AM LEARNING ONLY BECUZ OF EXPERIENCE IN DIRECTING AIR 2 MY “HEAD VOICE.” & KNOWING THE DIFFERENT WAYS 2 BREATHE.

SPEAKING OF MUSIC THERAPY: I ALWAYS TAKE THESE BIG INVOLUNTARY BREATHES EVERY NOW & THEN, LIKE MY BREATHING IS NORMALLY SHALLOW, SO I NEED 2 “CATCH UP.” I TRY 2 CONTROL THESE BREATHES, BUT MY PBA MAKES ME GIGGLE WHEN I HEAR HOW LOUD I AM, FROM SUCH A BIG BREATH.
THANKFULLY, MY PBA MEDICINE IS HELPING W/THIS (I AM LOVING THESE MEDS!), & RECENTLY (IN MUSIC THERAPY), I TOOK A BIG BREATH, & THIS TIME I “SANG” & CONTROLLED THE RELEASE OF AIR! (I “SING” IN MUSIC THERAPY. REALLY, I SOUND AWFUL, & I JUST TRY 2 MATCH PITCH). BUT CONTROLLING AN INVOLUNTARY BREATH WAS SUPER EXCITING! MY THERAPIST FREAKED, & WONDERED IF THE MEDS HELPED. I SAID “I KNOW IT DOES” (THE MEDICINE HELPED ME CONTROL MY EMOTIONS ENOUGH, THAT I COULD IGNORE THE GIGGLE & KEEP DOING WHAT I WAS TRYING TO DO!) & SHE SAID, “THOSE ARE SOME GOOD MEDS!”

I DO SING 2 STUFF ALONE AT HOME THOUGH — & IT’S SUPER HARD 2 GO DOWN A SCALE, & GOING UP REQUIRES A PUSH OF AIR. FAMILY HAS HEARD ME TRY 2 SING, BUT I SOUND AWFUL. RIGHT NOW, I DO BEST W/FAMILIAR STUFF, LIKE “OLD MCDONALD” (I MOO, ETC.), OR CHRISTMAS SONGS. BUT WHEN I STARTED MUSIC THERAPY, I HAD A DREAM. IN THE DREAM, I SAT AT MY COMPUTER DESK, AND I WAS SINGING WHAT I NEEDED 2 SAY TO MY KIDS, EVEN WHEN I DISCIPLINED THEM…I HAVEN’T HAD LUCK YET W/DOING THIS, BUT I HAVE BEEN ENCOURAGED TO DO THIS EXACT THING 4 MY MUSIC THERAPY “HOMEWORK!”

ONE MORE EXCITING “TALKING” STORY: 8/31 WAS A “TALKING DAY” & I HAD “WARMED UP” IN MUSIC THERAPY . MY FRIEND CAME OVER & WE CHATTED…& I SPOKE ALMOST THE ENTIRE CONVERSATION W/HER FOLLOWING A FORMAT SIMILAR 2 “SOPHIA’S FORMAT!” WHAT’S FUNNY IS HER SON WENT ON A 2 YEAR MISSION 4 OUR CHURCH, & B4 HE LEFT, HE SAID I’D BE TALKING IN SENTENCES BY THE TIME HE CAME HOME! THAT WAS ALMOST 2 YEARS AGO!

BTW, MY VIDEO IS ALSO ON YOU-TUBE, & THOUGH I’M NEW 2 THIS YOU-TUBE THING, I FINALLY FIGURED OUT HOW 2 ADD TAGS—SO IF U MISSED MY VIDEO, IT’S ON YOU-TUBE, & NOW IT HAS TAGS LIKE “STROKE, LOCKED-IN SYNDROME, 2012, RECOVERY, 2004, JENNY LYNN, MARK LYNN, JENNY’S STORY, & JENANNLYNN(WHICH SEEMS LIKE THE BEST TAG)”.

JENNY’S STORY

    “WILL YOUR STORY AMOUNT TO THE NATURE OF STORIES & EMBRACE THE FACT THAT SHARING THE SAD ONES CAN SOMETIMES MAKE THEM HAPPY?” BY ABED NADIR FROM COMMUNITY

PRE-STROKE, A FRIEND SHOWED ME SOME JOKE ON THE BLUE COLLAR CO. DVD SHE HAD JUST BOUGHT, SO I KNEW I LIKED IT. I FINALLY TIVOED & SAW THE WHOLE THING.. I DON’T REMEMBER WHAT PART SHE SHOWED ME, BUT WHEN I SAW IT THIS TIME, I WAS LAUGHING HARD, UNTIL THE END, WHEN JEFF FOXWORTHY WAS TELLING ABOUT A GUY’S MOM, WHO HAD A STROKE…HE STARTED SAYING ALL THIS BAD STUFF (LIKE SHE CAN’T MOVE AA SIDE OF HER BODY & CAN’T TALK)–HE BASICALLY DESCRIBED ME–& THE PUNCHLINE WAS, “I’M KIDDING…SHE’S DEAD.”

NOW, I LAUGH ALL THE TIME WHEN FAMILY GUY DOES HANDICAPPED JOKES, BUT THIS WAS A BIT TOO PERSONAL…

SOMEONE IN MY YAHOO STROKE GROUP POINTED OUT THAT “AT TIMES, RECOVERY MAY SEEM LIKE IT’S NOT HAPPENING BUT IT IS. IT CAN’T BE MEASURED IN WEEKS OR MONTHS BUT YEARS.”

I REALIZE THIS, SO I CELEBRATE EVERY LITTLE THING…OTHERWISE, IT CAN BE DEPRESSING TO WATCH, SINCE IT JUST PROVES HOW FAR I STILL NEED 2 GO! BUT I REMEMBER HOW GRATEFUL I AM 2 BE ALIVE, SO I CAN RECOVER ANYTHING AT ALL—SOME ARE NOT AS FORTUNATE!

LUCKILY, MY HUSBAND VIDEO-TAPED ME DURING THE 1ST YEAR, THEN MADE A MOVIE. IT SHOWS MY PROGRESSION DURING THE 1ST 9 MONTHS, & EVEN NOW, I REFER 2 IT, SO I CAN REALLY C HOW FAR I’VE COME.

IN DEC. 2011, I WAS HELPING SOPH DO A BOOK REPORT, & HAD READ THE CHILDREN’S NOVEL IN PREPERATION…IT WAS CALLED “HOW TO STEAL A DOG.” THE LITTLE GIRL IN THE BOOK WAS VERY UPSET ABOUT HER LIFE: HER DAD LEFT, & HER, HER BROTHER, & HER MOM WERE NOW LIVING IN THEIR CAR. EVENTUALLY, THEY “UPGRADED” 2 A RUN-DOWN SHACK. NEEDLESS 2 SAY, THE LITTLE GIRL WAS VERY DEPRESSED & COULDN’T SEE A WORSE LOT IN LIFE.

IN 2004, BEING CONFINED 2 MY BED WAS AS APPEALING AS LIVING OUT OF A CAR WAS 4 THE GIRL IN THE BOOK. I’VE NOW “UPGRADED,” AND SOME CONSIDER ME LIKE A QUAD. IN A SENSE, I AM IN THE EQUIVALENT TO THE RUN-DOWN SHACK I GUESS THAT SHOULD DEPRESS ME, BUT I JUST SEE A “HOUSE” (AT LEAST THERE’S A ROOF OVER MY HEAD!), & AM GRATEFUL 4 WHAT I HAVE. SURE, IT’S NOT PERFECT, BUT I MANAGE QUITE WELL! & I CAN’T RECALL WHERE I HEARD THIS, OR WHO SAID IT, BUT “The beauty of it, is not knowing what comes next.”

IN OCT. 2007, I “SPOKE” AT AN INTERNATIONAL DOCTOR’S CONFERENCE, AFTER THEY SHOWED THE BELOW VIDEO. THE DOCTOR’S ASKED 4 A COPY OF THE VIDEO, & I WAS SUPPOSED 2 PUT IT ON YOU-TUBE (I FIGURE IT WAS REQUESTED 4 A SIMILAR REASON TO SOMETHING LIKE A QUOTE IN THE BOOK: “Sometimes the trail you leave behind you is more important than the path ahead of you.” By Mookie, from How to Steal a Dog), BUT I JUST FIGURED OUT HOW 2 PUT THE VIDEO ON YOU-TUBE (IT’S CALLED “JENNY’S STORY”)…HOPE I’M NOT TOO LATE (LOL) & HOPE I DID IT RIGHT SO IT CAN STAY, BUT I DON’T KNOW IF IT’LL STAY THERE, SO ENJOY IT WHILE U CAN!

PLAYING AROUND

I’M PLAYING AROUND WITH A NEW FEATURE IN THE UPDATED SENTENCE SHAPER SPEECH PROGRAM. IF I DID IT RIGHT, U’LL SEE A VIDEO OF A SCRAPBOOK I MADE, WHERE I SAY ALL THE LETTERS OF THE ALPHABET (I MADE IT A FEW MONTHS AGO, BUT U GET THE IDEA–NOW, IF I LAY DOWN, I’M TONS CLEAERER, & SAY LETTERS LIKE B, F, G, J, P, & S BETTER).

WE ALL ARE SPECIAL

I BELIEVE WE ALL ARE SPECIAL, & ALL HAVE PURPOSE. BUT SOMETIMES I THINK THERE ARE DAYS WHERE IT’S HARD 2 SEE YOUR PURPOSE IN LIFE, & HOW U MAKE THE WORLD A BETTER PLACE.

MY HUSBAND RECENTLY GOT A SALT WATER AQUARIUM. THERE ARE A FEW THINGS THAT MOVE: 3 FISH, 2 HERMIT CRABS, 2 SHRIMP, & A STARFISH. BUT MOSTLY, IT HAS CORAL. IT AMAZES ME WHEN THE CORAL ARE FED—I ALWAYS THOUGHT OF THEM MORE LIKE A PLANT, BUT THEY ARE ALIVE THE SAME AS FISH, & WHEN THEY ARE FED, THEY STICK OUT THESE LITTLE TENTACLES!

RECENTLY, 1 OF THESE CORAL WAS KNOCKED OFF OF IT’S PLACE ON THE ROCK BY THE STARFISH. NOW, I DOUBT FISH THINK LIKE A HUMAN, BUT I IMAGINED IT LAYING THERE THINKING, “HELP ME!” (WHEN I FELL ON THE GROUND, I THOUGHT THAT, & WAITED 4 SOME1 TO COME 2 MY AID.)

MY HUSBAND NOTICED, KNOCKED THE STARFISH OUT OF THE WAY, & “RESCUED” & PUT BACK THE CORAL. I COULD IMMAGINE HOW GRATEFUL THE CORAL WAS, BUT AS I WATCHED IT BE PUT BACK IN PLACE, I NOTICED HOW THAT 1 CORAL MADE THE TANK PRETTIER.

I THINK WE ARE THAT WAY. SURE, THE MOVING FISH, SHRIMP, HERMIT CRABS, & STARFISH ARE PRETTY, BUT SO ARE THE STATIONARY CORAL, & WHEN 1 GETS SICK OR FALLS, IT IS NOTICED. THEY MATTER, & MAKE THE “’PICTURE” COMPLETE.

I KNOW THERE ARE A FEW STROKE SURVIVORS & CAREGIVERS OUT THERE WHO READ MY BLOG/WEBSITE, & THIS NOTE IS FOR THE STROKE SURVIVORS: U, TOO, ARE IMPORTANT. U ARE NEEDED. W/O U, THE WORLD IS A DIFFERENT PLACE…

& 2 THE CAREGIVERS: THK U FOR LETTING THOSE WHO ARE STATIONARY BE “PART OF THE PICTURE.”

MY SPEECH & MY YW CALLING

IT’S BEEN A CRAZY SUMMER, BUT THINGS ARE SLOWING DOWN A BIT.
II HAVE 2 TELL U HOW MUCH THE SPEECH PROGRAM, SENTENCE SHAPER, IS HELPING ME, EVEN THOUGH THE SUMMER HAS BEEN TOO CRAZY FOR ME 2 USE IT! WHAT IT HAS TAUGHT ME IS THAT MY WORDS RUN TOGETHER, MAKING ME SOUND LIKE THE TEACHER ON CHARLIE BROWN! BUT IF I SAY THE WORDS SLOWLY & SEPERATELY, LIKE I DO FOR SENTENCE SHAPER, I MAKE SENSE!
MY DAUGHTER, SOPHIA, CAN SOMETIMES FIGURE ME OUT WHEN I SPEAK FAST (AMAZING), BUT IF SHE CAN’T, SHE HAS ME BREAK IT UP WORD-4-WORD, LIKE IN SENTENCE SHAPER. IN FACT, THE OTHER DAY, SHE WAS IN HER CLOSET & COULD NOT SEE ME, BUT WE HELD A CONVERSATION. IT WENT LIKE THIS:
ME: HI
SOPH: HI! HOW ARE U?
ME: GOOD. (PAUSE) DO
SOPH: DO
ME: YOU
SOPH:YOU
ME: KNOW
SOPH: KNOW
ME: I(F)
SOPH: IF
ME: YOUR
SOPH: YOUR
ME: (P)IANO
SOPH: AGAIN? (SHE CAME OUT TO SEE MY LIPS)
ME: (P)IANO
SOPH: WHAT WAS THE 1ST LETTER?
ME: I SIGNED “P”
SOPH: OH! PIANO! SAY IT AGAIN?
ME: PIANO (PAUSE) TEA(CH)ER
SOPH: TEACHER
ME: I(S)
SOPH: IS
ME: LD(S)?
SOPH: LDS
THEN SOPH ANSWERED MY QUESTION.
AT THE END OF MAY, I STARTED HAVING “NO SIGNING DAYS”, & I CAN ONLY TALK FOR 6 HOURS DURING A DAY/TIME THAT I PICK. I HAVE QUITE A BIT OF ANXIETY, SO I HAVE HAD A TOUGH TIME, BUT OCCASSIONALLY, I AM “ANXIETY-FREE” & HAVE EMPLOYED THIS SAME TECHNIQUE WITH MY OTHER 2 KIDS, & HUSBAND. IT WORKS EVERYTIME!
SOMETIMES I LIKE NOT BEING UNDERSTOOD, BUT FEEL SATISFACTION SAYING IT (LOL)…BUT IF I WANT 2 BE UNDERSTOOD (& I WASN’T UNDERSTOOD), I SLOW IT DOWN, & TRY 2 PAUSE BETTER BETWEEN WORDS! (I LEARNED THAT FROM SENTENCE SHAPER)
IN OTHER NEWS, IT HAS BEEN A LONG TIME SINCE I’VE READ THE ARTICLE I PUBLISHED IN THE LDS (MORMON) CHURCH MAGAZINE, THE ENSIGN (SEPT. 2008, Primary Songs Blessed Me):
http://www.lds.org/liahona/2008/09/primary-songs-blessed-me?lang=eng&query=jennifer+lynn

HOWEVER, THERE WAS A PART THAT STOOD OUT 2 ME:
“We may not always understand why the Lord has given us a particular assignment. Even so, we must trust the Lord and put our faith in Him and His promptings. “

WHEN I WAS GIVEN THE ASSIGNMENT 2 TEACH THE YOUNG WOMEN (YW), I HAD NO CLUE HOW I’D DO IT—I COULDN’T TALK & I COULD BARELY MOVE, BUT IT WAS MADE CLEAR 2 ME THAT THIS WAS AN ASSIGNMENT FROM THE LORD. & I HAD THE FAITH THAT GOD WOULD FIND A WAY TO MAKE IT WORK….& HE DID!

I DON’T THINK I’VE EVER ATTEMMPTED 2 EXPLAIN HOW I TEACH THE YOUNG WOMEN (12-18 YEAR OLD GIRLS), ONCE A MONTH, BUT I WANT TO DO SO NOW:
GIRLS VOLUNTEER 2 BE MY TRANSLATOR THAT MONTH. THE TRANSLATOR SPEEAKS & ACTS 4 ME (WRITING ON THE BOARD, HANDING THINGS OUT, CALLING ON PEOPLE TO ANSWER QUESTIONS, CLARIFING WHAT I AM TRYING TO SAY, OR ADD INPUT TO THE LESSON AS WELL.)

SINCE I WAS A TEACHER PRIOR 2 MY STROKE, & SINCE AM “HYPER-ORGANIZED,” I HAVE A VERY DETAILED, COLOR-CODED LESON PLAN. (WHAT THE TRANSLATOR SAYS/DOES IS 1 COLOR, WHAT I SIGN IS ANOTHER COLOR, ETC.) I TYPE OUT WHAT I PLAN TO SAY, BUT IT CAN CHANGE, SO THE GIRL’S REALLY DO READ MY SIGN LANGUAGE!

HOWEVER, WE HAVE A PRACTICE THE WEEK B4, SO THEY ARE FAMILIAR WITH THE LESSON, WE CLEAR UP ANY QUESTIONS OF WHAT THEY’LL BE DOING, & THEY KNOW MY MESSAGE. I ALSO TRY TO LIMIT MY SIGNING BY:
• USING THE SPEAKING MACHINE ON MY IPAD (IT SITS IN MY LAP, W/SPEAKERS ATTACHED 2 MY CHAIR) TO ASK QUESTIONS
• I OFTEN HAVE A POWERPOINT OR A VISUAL ID THT “SPEAKS” 4 ME
• THE GIRLS READ A LOT FOR ME (STORIES, SCRIPTURES, & SOMETIMES THINGS ON THE POWERPOINT SLIDES)
• AS MY SPEECH IMPROVES, I TRY 2 USE MY VOICE MORE

MY DAUGHTER, JESS, TURNED 12 IN FEB. SHE READS MY ASL FAST & CAN HELP IF THERE IS THE NEED, & SHE IS A “BACK-UP TRANSLATOR,” BUT SHE HAS ONLY BEEN NEEDED ONCE AS MY TRANSLATOR!

I ABSOLUTELY LOVE THIS ASSIGNMENT, & I AM LUCKY 2 WORK WITH THE GIRLS 1-ON-1, SO I GET 2 KNOW THEM! I AM SO GLAD THAT I ACCEPTTED THE ASSIGNMENT, EVEN THOUGH I HAD NO UNDERSTANDING OF HOW I WOULD ACCOMPLISH IT!