Month: May 2013

THE SPEECH BATTLE

AFTER MY LAST POST, U’D THINK I HAVE THIS TALKING THING DOWN, BUT I DON’T…IN FACT, AS SOON AS I POSTED IT, TALKING BECAME EXTREMELY DIFFICULT, & REQUIRED SO MUCH MORE EFFORT, THAT AFTER A FEW DAYS, I STOPPED TRYING SO HARD—IT WAS EXHAUSTING JUST 2 THINK ABOUT TALKING!

I STARTED THE MONTH BY SAYING A LOT, & SO MANY PEOPLE WOULD PATIENTLY WAIT 4 ME 2 TALK, & some still do! BUT SOMETIMES, I HAVE A SUPER HARD TIME TALKING, & IF I THINK ABOUT THE WORDS INSTEAD OF JUST SPEAKING RIGHT AWAY. THE LONGER I THINK ABOUT IT, OR THE MORE I REPEAT IT, THE HARDER IT GETS 2 SAY IT!

AS THE MONTH WENT ON, THE EFFORT LEVEL INCREASED, & I STARTED GETTING IMPATIENT W/MYSELF (& I SAW THE KIDS GETTING IMPATIENT TOO). UNFORTUNATELY, WHEN THE EFFORT LEVEL IS HIGH, SOMETIMES I CAN BARELY GET OUT ANYTHING, SO I’D LOSE FAITH IN MYSELF, & DO WHAT WAS EASY: I WOULD GIVE UP, & SIGN. & THE MORE I DID THAT, THE WORSE I GOT AT RELYING ON MY ASL VERSUS MY SPEECH!

NOW I SIGN TOO MUCH BECUZ I FEAR NOT BEING UNDERSTOOD! BUT THE REALITY IS THAT NOW MY FAMILY HAS GOTTEN SO GOOD AT UNDERSTANDING ME, JUST AS A MOTHER STARTS UNDERSTANDING HER TALKING TODDLER,, THAT WHILE A STRANGER MAY NOT UNDERSTAND ME, THEY DO (I CAN’T TELL U HOW MANY TIMES I THOUGHT, “THERE’S NO WAY THEY UNDERSTOOD THAT—EVEN I DIDN’T UNDRSTAND ME!”…BUT THEY DO KNOW WHAT I SAID!

IT IS WEIRD, CUZ I HAVE “PHASES” WHERE I TALK AWESOME! 1 MIN. I TRY & CAN’T TALK 4 THE LIFE OF ME, BUT THE NEXT I CAN, & THEY LAST 15 MIN.-1 HOUR, (BUT SINCE MY HUSBAND SEEMS 2 RARELY BE AROUND WHEN IT HAPPENS, & SINCE HE READS MY SIGN SO WELL, I FEAR I AM “GIVING IN…”) & ODDLY, IF I LAY DOWN, I SPEAK WITH MUCH LESS EFFORT, SO IF I HAVE TIME TO LAY DOWN, I CAN SUDDENLY TALK, WHEN I COULDN’T TALK B4, & IF I SPEAK SPONTANEOUSLY, IT IS EASY & CLEAR.

THE OTHER DILEMNAS I NOW FACE W/MY SPEECH:
1. I CAN’T COUGH! I CAN’T TELL U HOW DISCOURAGING THIS CAN BE! A BUBBLE IN THE THROAT, OR A LIITLE FLEM IN THE THROAT CAN FEEL LIKE MY VOICE HAS 2 PUSH THROUGH A BRICK WALL, IN ORDER 2 MAKE NOISE!
2. IT IS A BIG PROBLEM IF I’M TIRED! SOMETIMES JUST THE THOUGHT OF SAYING SOMETHING EXHAUSTS ME, SO I “WIMP OUT.”
3. MY EMOTIONS GET IN THE WAY. MOST OF THEM I CLAM UP.
4. MY KIDS REQUEST ME JUST 2 SIGN, BECUZ IT’S SLOW, & REQUIRES A LOT OF WORK ON THEIR PART, THEY ARE IN A HURRY, OR THEY CLAIM THEY DON’T UNDERSTAND ME, WHEN I KNOW THEY DID!

BUT I THINK THE BIGGEST PROBLEM IS ME, WHEN I DON’T TRUST MYSELF. ALL THE ABOVE ARE VALID ISSUES, BUT I CAN USE THEM AS AN EXCUSE, & THEN NOT ACCEPT THE TRUTH: IT’S HARD, & I DON’T WANT 2 DO WHAT’S HARD! EVERYTHING I DO IS HARD, & I AM TIRED, SO THE EXCUSES, WHILE TRUE, MAKE ME FEEL BETTER ABOUT IT, WHEN I SIGN, & DISAPPOINT MYSELF! (I CAN HEAR MY HUSBAND SAYING, “THAT’S WHAT I’VE BEEN SAYING!)

THIS DOESN’T MEAN I’M “FIXED” NOW. IT MEANS I RECOGNIZE IT, BUT I STILL HAVE 2 DO WHAT’S HARD, & AT TIMES I WILL SLIP, OR FACE OTHER OBSTACLES. BUT I KNOW THE UNFORTUNATE TRUTH: IT WILL ONLY GET EASIER BY DOING WHAT’S HARD. THAT’S WHERE I ASK 4 GOD’S HELP!

PRACTICE MAKES PERFECT

THIS WEEK, I STARTED RATING MY SPEECH ON 2 SCALES:
1. HOW OFTEN I SIGN VS. SPEAK (THE # IS HIGHER THE MORE I SPEAK), &
2. HOW EASY & CLEAR IT IS WHEN I SPEAK.

ON MON., I DID NOT PUT FORTH THE TIME 2 PRACTICE MY SPEECH WELL, & IT SHOWED ON TUESDAY, AS MY RATE OF SPEECH DRAMATICALLY FELL FROM A 7 TO A 2…SO TUES., I PRACTICED, BUT IT WAS HARD TO PRACTICE, CUZ I WAS HAVING SUCH A HARD TIME VOCALIZING., & REALLY WAS LACKING THE MOTIVATION TO PRACTICE. WED. IS ALWAYS MY SPEAKING DAY, BUT BECUZ I STILL HADN’T PRACTICED WELL THE DAY BEFORE, IT WAS HARD TO TALK AGAIN ON WED. OF COURSE, I GOT NERVOUS, CUZ THAT DAY, I COULDN’T SIGN (WELL, I DID GIVE IN A FEW TIMES—HENCE A 9.5 RATE IN HOW OFTEN I SPOKE VS. SIGNED, BUT IT WAS ONLY A “2” ON HOW EASY/CLEAR MY SPEECH WAS). SO I PRACTICED A LOT, WARMING UP MY VOICE…BUT IT DIDN’T REALLY HELP ME THAT DAY…HOWEVER, THURSDAY, I ROCKETED BACK UP, & COULD TALK AGAIN! I KNEW IT MATTERED 2 PRACTICE, BUT I’VE NEVER SEEN SUCH DRAMATIC RESULTS IN THE 4-5 MONTHS I’VE BEEN KEEPING A PRACTICE LOG! THURS., I MADE SURE 2 PRACTICE, & FRIDAY, I AGAIN WAS ENJOYING BEING ABLE 2 TALK. HOWEVER, I RAN OUT OF PRACTICE TIME THURS., & GOT DISTRACTED WHEN I FOUND MORE TIME, SO MY SPEECH ON FRIDAY WASN’T AS GOOD AS IT COULD HAVE BEEN. STILL, I FORGET HOW AWESOME IT IS 2 NOT HAVE 2 WAIT 4 SOME1 TO LOOK AT ME, SO I CAN TALK! & HAVING A GLIMPSE OF THAT MOTIVATES ME TO PRACTICE EACH DAY, SO I CAN ENJOY THE RESULT THE NEXT DAY!

I REALIZED THAT THIS ALL RELATES 2 OUR SPIRITUALAITY…IF WE DON’T PUT FORTH “PRACTICE TIME” (READING SCRIPTURES, PRAYING), THEN IT GETS HARDER 2 FEEL THE SPIRIT. & IF THE SPIRIT ISN’T THERE, IT’S HARD 2 “PRACTICE.” BUT WHEN WE DESPERATELY NEED IT, SO WE MAKE OURSELVES REALLY “PRACTICE,” THE SPIRIT COMES BACK…BUT NOT ALWAYS RIGHT AWAY, LIKE WE MAY HOPE! HOWEVER, WHEN THE SPIRIT OF GOD IS BACK W/US, WE REJOICE, HAVING FORGOT HOW AWESOME IT IS TO HAVE IT!

STILL, IF WE RUN OUT OF “PRACTICE TIME” (SAY WE DON’T PRAY, BUT READ OUR SCRIPTURES), THEN WHILE WE ARE GOOD, WE ARE NOT AS GOOD AS WE COULD BE! HOWEVER, HAVING A GLIMPSE AT WHAT IS POSSIBLE, CAN HELP MOTIVATE US TO DO THE THINGS WE NEED TO DO DAILY, TO KEEP OUR SPIRITUAL HEALTH STRONG!

TWINKLE TWINKLE

I STILL AM NOT GREAT AT MY GOAL, & FELT LIKE I WAS A FAILURE, UNTIL I REALIZED THAT MY GOAL WAS TOO BIG! NOW, EVERYDAY IS A NEW START 2 MY GOAL, & IF I FAIL 1 DAY BY SIGNING TOO MUCH, THE NEXT DAY I CAN TRY AGAIN! BUT IF I FAIL EARLY ON IN THE DAY, I JUST TRY TO DO BETTER. I RATE HOW WELL I DO EACH DAY (ON A 1-10 SCALE, 10 BEING THE BEST), & I TRY NOT TO GET BELOW A 5. MY WORST SCORE HAS BEEN A 5! LOL

THIS WAS ON MY PRACTICES THAT I RECORDED THIS WEEK FOR MUSIC THERAPY. I DEFINATELY DO NOT SOUND THIS GOOD WHEN I SING “TWINKLE, TWINKLE, LITTLE STAR” STRAIGHT THROUGH! I SANG EACH WORD 3 OR MORE TIMES, & PICKED THE BEST WORD, THAT WAS THE MOST ON PITCH. “MOVIE MAGIC” DOES THE REST!

WHAT I DO (I’VE EXPLAINED THIS B4):
I USE A SPEECH PROGRAM CALLED “SENTENCE SHAPER 2.” & THE PROGRAM USES PICTURES & MY VOICE TO MAKE A “WORKBOOK.” I HAVE PICTURES WITH SENTENCES TYPED ABOVE THE PICTURES. EACH PICTURE IS A PAGE IN THE WORKBOOK, AND I TRY TO SAY EACH TYPED SENTENCE. I SAY A WORD SEVERAL TIMES & RECORD THE “SNIP-ITS,” THEN CHOOSE A “SNIP-IT” (WORD) 2 KEEP. THOSE WORDS FORM A SENTENCE. I PUT THE “SNIP-IT’S” IN ORDER SO I SOUND LIKE I’M SAYING A SENTENCE, & THEN THEY ARE COMBINED TO MAKE A “BEAN.” EVENTUALLY, I CAN HAVE SENTENCES BE “SNIP-ITS” THAT CAN BE COMBINED 2 FORM PHARAGRAPHS (“BEANS”).

THEN I EXPORTED IT, & I HAVE UPLOADED IT TO MY ITUNES & MY IPAD. THEN, I TURNED THE WORKBOOK INTO A VIDEO. THAT IS WHAT U SEE. YOU HEAR THE EXPORTED BEANS, SEE THE PICTURES, & SEE THE TYPE THAT SAYS WHAT I SAY.

do u have aids/caretaker that come?

MK IS REALLY MY CARETAKER, BUT I DO HAVE SOME1 WHO COMES. ANGIE COMES 2 1/2 DAYS/WEEK–MON. , WED., & THURSDAYS, FOR ABOUT 3-7 HOURS. BUT SHE’S NOT TRAINED OR ANYTHING. JUST A CHURCH FRIEND WHO’S LIKE A PERSONAL ASSISSTANT, WHO OCCASIONALLY POTTIES ME. THE 1ST YEAR I HAD NURSES, BUT 1 LIED & STOLE, & NURSES TEND 2 TREAT ME MORE LIKE THE MEDICAL CONDITION, &/OR MENTALLY CHALLENGED. CHURCH FRIENDS HAVE BEEN HONEST, & I HANG OUT & HAVE FUN WITH A FRIEND ALL DAY, WHICH REALLY HELPS EMOTIONALLY! SHE DOES THERAPY W/ME, GIVES ME FOOD (I FEED MYSELF NOW, BUT WHEN I COULDN’T, IT WAS AN ISSUE W/THE NURSES), & HELPS ME DO ODD JOBS, WHETHER CLEANING, BURNING A CD, ORGANIZING, OR SCRAPBOOKING. MY CURRENT “HELPER” DOES A LOT OF HEALTHY COOKING 4 ME, AS WELL. & I HAVE A SPECIAL BOND WITH HER TODDLER…SINCE HE’S A TALKER, HE LOVES 2 HAVE ME TALK…IN FACT, WE HAVE THESE CONVERSATIONS THAT NO1 UNDERSTANDS COMPLETELY! LOL (WELL, ANGIE GETS MOST OF IT, SINCE SHE UNDERSTANDS HIM, & USUALLY CAN FIGURE ME OUT TOO!) BETWEEN HIM & HER, IT HAS REALLY HELPED MY SPEECH!

do u still stand @ home & do water therapy?

YES. & I HOPE IT WILL HELP ME TO STILL RECOVER MORE. (WHEN I HAD MY STROKE, I WAS TOLD THAT WHATEVER I RECOVERED AFTER 6-9 MONTHS WAS ALL I’D GET BACK. WHAT A HUGE LIE! I REMEMBER I WAS SO UPSET, CUZ I BARELY STARTED RECOVERING THEN! I’VE RECOVERED TONS SINCE THEN!)

THE 1ST YEAR POST STROKE, WE HIT EXERCISES PRETTY HARD. NOW, I DO ENOUGH 2 MAINTAIN THAT PROGRESS, SO I DO TILT TABLE FOR AT LEAST 30 MIN. A DAY, OR MY HUSBAND WILL SUPPORT ME SO I CAN STAND WHEN WE ARE ON VACATION, OR IF I CAN’T SEE SOMETHING.

I DO WATER THERAPY ON OCCASION, & CAN TAKE SOME STEPS W/MY HUSBAND’S SUPPORT. IT’S HARD 2 MAKE MY LEFT KNEE BEND, & 2 RAISE MY LEFT FOOT AS I STEP FORWARD, SO I TEND 2 SWING MY LEG AROUND, OR MY HUSBAND NUDGES IT WHEN I GET STUCK.