Author: Jenny

In March 2004, I suffered a severe brainstem stroke, & was "locked in" for several months". I have been married to a wonderful man, Mark ever since Dec. 1994, & we have 3 kids: Zach (1997),, Jessica (2000), & Sophie (2002). I have been blessed in so many ways by God, so I wanted to keep a blog to share my recovery, life, & answer questions.

How do you deal with discipline?


IT FRUSTRATES ME AT TIMES BECUZ I CAN’T B A “NORMAL” MOM. SO, I HAVE A PICTURE 2 SHOW U MY IDEA. IT’S SIMPLER THAN IT SOUNDS. ACTUALLY, MY SISTER MADE A SUGGESTION, & I “IMPROVED” IT! LOL BUT IT STARTED BECUZ MY KIDS DON’T WANT 2 SPELL OUT THEIR DISCIPLINE–WHAT KID WANTS 2 YELL AT THEMSELVES, & SLOWLY SPELL OUT THEIR PUNISHMENT? SO, I MADE THESE CARDS THAT I CAN FLASH AT THEM, SAYING THINGS LIKE “STOP HITTING!” OR “YOU’RE GROUNDED!” I NOWHAVE 2 KEYRINGS OF “STOCK PHRASES” 2 SAY 2 OTHERS WHO CAN’T SIGN, & A 2ND KEYRING 2 DISCIPLINE MY KIDS, SO THEY CAN’T PULL THE “I DON’T UNDERSTAND U” THING!

I ACTUALLY RARELY USE THEM NOW, BECUZ I AM TALKING MORE. STRANGERS WON’T UNDERSTAND ME, BUT MY KIDS DO. I HAVE 3 SPEAKING COMPUTER PROGRAMS THAT I CUSTOMIZED W/THESE PHRSAES, SO I PRACTICE “YELLING AT MY KIDS!” LOL

HERE’S MY INSTRUCTIONS, & THE PHRASES I USE (U CAN ADAPT/CHANGE THEM 2 THINGS U ALWAYS THINK):

PRINT & CUT OUT, ATTACH 2 HALF AN INDEX CARD, PUNCHED IN A CORNER, & ON A KEYRING. I KEEP IN MY WHEELCHAIR POCKET SO WHEN A KID CLAIMS THE “CAN’T UNDERSTAND U” GAME, OR SOME1 WHO CAN’T SIGN COMES BY & I WANT 2 TALK 2 THEM, I CAN JUST WHIP OUT THE CARD AND POINT TO A PHRASE OR A CATEGORY

2 ASSIST MY DOUBLE VISION, EVERY PHRASE IS IN A DIFFERENT COLOR, & SO I COULD LOCATE THINGS QUICKER 4 THE KIDS, I COLOR-CODED THE INDEX CARDS (LIKE IF I NEED A PUNISHMENT, I ONLY LOOK AT THE PINK INDEX CARDS–THIS IS SOOO HELPFUL!) I THEN HAVE THE CARDS IN ORDER (4 EX., I DON’T WANT 2 LOCATE THE CARD 2 STOP HITTING, SO IT IS ON TOP, & I CAN JUST WHIP IT OUT!)

MY COLOR-CODE INDEX CARDS 4 THE KIDS KEYRINGIS AS FOLLOWS:
1. FLOURESCENT YELLLOW–WARNING
2. FLOURESCENT PINK–PUNISHMENT
3. FLOURESCENT GREEN–COMMAND
4. PASTEL BLUE—INSTRUCTION, ENCOURAGEMENT

IN ORDER 2 DISCIPLINE THE KIDS W/O SIGNING, I MADE A KEYRING W/THE FOLLOWING PHRASES:

* NO BABY TALK

*STOP HURTING YOUR
BROTHER OR
SISTER.

* IF U CHOOSE TO IGNORE OR YELL AT ME, U’LL BE GROUNDED

* U ARE GROUNDED

* IF U CHOOSE TO IGNORE OR YELL AT ME, U WILL WEED.

* U NEED TO WEED

* TIME OUT

* DO IT NOW!

* DO IT, OR I’LL TELL DAD!

*STOP WHINING & JUST DO IT!

*GET OFF YOUR BUTT!

* HURRY UP!

*GET READY FOR BED

*PICK UP YOUR ROOM

*PICK UP YOUR TOYS

*SHARE

* YOU ARE DOING GREAT!

* QUIET PLEASE!

IN ORDER 2 HELP ME, “TALK” 2 MK WHILE HE’S ON THE PHONE, OR TALK 2 THOSE WHO CAN’T SIGN, I MADE THIS SECOND KEYRING:

* I NEED TO LEAVE

* I’LL BE BACK

* CAN U MOVE SO I CAN SEE?

* OPEN & HOLD OPEN DOOR

* PUT LEFT FOOT ON FOOTREST

*I NEED A WARM BLANKET

*SUNGLASSES ON

*PULL MY KNEES A LITTLE BIT

*BACK OF SHIRT DOWN

* GET MARK

*BUTT RIGHT

*BUTT LEFT

* I EMAILED YOU

* did the dentist/eye doctor come to your home, or if not, how did you handle getting in and out of exam chair?

SOME DO PIVOT TRANSFERS (WITH A CAREGIVER, & SOMETIMES THE DOCTOR HELPS), OR BRING PORTABLE LIFTS, BUT I AM FORTUNATE: MY HUSBAND CAN LIFT ME, & I BALANCE WELL ENOUGH 2 SIT IN THEIR EXAM CHAIR, THOUGH SINCE MY W/C TILTS FAR BACK, THE DENTIST HAS OFFERED ME STAYING IN MY CHAIR (THOUGH I NEVER DO–I ONLY STAY IN MY W/C IN THE PHYSICIANS OFFICE). MY W/C ALSO ELEVATES, & THE EYE DOCTOR HAS ALSO OFFERED 2 STAY IN MY W/C, THOUGH I DON’T. MANY TESTS CAN BE DONE “MANUALLY.”

ALSO, U CAN PHONE AHEAD, & VISIT THE OFFICE FOR ACCESSIBILITY. THEY USUALLY TRY TO BE VERY HELPFUL.

* did you look for a doctor with a certain specialty?

NO. SOME DO, ESP. W/EYE DOCTORS, BUT I GO WHERE IT’S CONVIENIANT & WHERE MY KIDS GO. MY DENTIST IS A FAMILY FRIEND. THE DOCTORS LEARN THINGS RIGHT ALONG W/ME, ABOUT MY CONDITION, & HOW 2 MEET MY NEEDS, THOUGH IT HELPS 2 HAVE FAMILY “WARN” THEM ABOUT MY PBA, & MENTAL STATUS (SHE’S FULLY THERE, EVEN THOUGH SHE’S UNABLE 2 SPEAK, & SHE HAS A CONDITION WHERE SHE’S UNABLE 2 CONTROL HER EMOTIONS)!

QUESTIONS ANSWERED

I WAS ASKED IF I STILL DO SPEECH, SO, CONSIDERING THAT IT’S BEEN AWHILE SINCE I’VE POSTED, I THOUGHT I’D POST MY RESPONSE: I STILL DO SPEECH THERAPY ONCE A WEEK, AS WELL AS “SINGING” IN MUSIC THERAPY. MY MUSIC & SPEECH THERAPISTS COME HERE, PLUS I HAVE 3 SPEAKING COMPUTER PROGRAMS BUNGALOW SOFTWARE — SIGHTS & SOUNDS 1 & 2, & SPEECH SOUNDS ON CUE-THXS 2 ANOTHER STROKE SURVIVOR!) HERE’S ANOTHER COOL SPEECH SIGHT: , & I “SING” THE ALPHABET SONG & OTHER SLOW CHILDHOOD FAVORITES ON YOUTUBE & IN MUSIC THERAPY (I STARTED BY JUST SAYING “MOO” IN “OLD MACDONALD”!).

IN ADDITION, IN MY LAST POST, I RECEIVED A COMMENT W/THIS QQUESTION: Is the reason you are unable to speak, neurological and also your breath support?

YES, BOTH. I’M MISSING A “CONNECTION”, SO IT’S TRICKY 2 TELL MY TONGUE & MOUTH WHAT 2 DO (PLUS, MY LEFT SIDE IS “PARALYZED”–I FEEL, BUT CAN’T MOVE IT–WELL, I CAN A BIT NOW W/MY MOUTH & LEG, BUT THE MUSCLES R SUPER WEAK!), AS WELL AS COORDINATE THE SOUND W/MY BREATHING. & UNTIL RECENTLY, MY BREATHING WAS INVOLUNTARY. I BARELY GOT ENOUGH CONTROL, SO I HAVE BEEN BUILDING MY BREATH SUPPORT, & AS I DID, MY SPEECH BECAME CLEARER. IT WAS EXCITING!

HOWEVER, THE PROGRAM I WAS DOING RECENTLY ENDED, & I’VE BEEN TRYING 2 MAINTAIN WHAT I GAINED, BUT IT’S A GUESSING GAME HOW 2 MAINTAIN, SO I’VE RECENTLY BEEN STRUGGLING. I NEED A BETTER WAY! (OR THE WAY MAY BE FINE, BUT I NEED 2 DO IT MORE FREQUENTLY.)

I WAS COMPLACENT WHEN THE POSSIBILITY WASN’T THERE, BUT NOW IT’S DOWN RIGHT FRUSTRATING 2 KNOW THE POSSIBILITIES, & NOT DO IT! LATELY, I STRUGGLE 2 SPEAK WHEN I WANT 2, & WHEN I DO, IT ISN’T AS CLEAR AT ALL!

LUCKILY, SOPH IS AMAZING AT UNDERSTANDING ME. WED. NIGHT, I ASKED HER, “WHAT ARE YOU EATING?” THE WORD “EATING” WAS HORRIBLE, BUT SHE MANAGED 2 MAKE IT OUT, & OFFER ME SOME. WE CONTINUED A MINI CONVERSATION, WHERE SHE HAD FUN ASKING QUESTIONS, & FIGURING OUT MY 1 WORD ANSWERS. NO EASY FEAT, W/HOW UNCLEAR I CAN BE LATELY! LOL

ON TO ANOTHER TOPIC…

I ALSO WAS ASKED ABOUT MY EATING:
I’M BITING & CHEWING A LITTLE NOW, & FEED MYSELF A LOT–I PREFER MY HANDS, BUT CAN MANAGE UTENSILS. (WE HAVE WORKED ON MY GRIP IN MUSIC THERAPY, WHICH HELPS WRITING, EATING, & GRABBING STUFF.)
& I USUALLY FINISH THE DRINK.

ODDLY, I’M QUITE PATIENT W/ASL, SINCE I APPRECIATE THE CARE 2 HEAR ME OUT, & EFFORT PUT FORTH 2 COMMUNICATE W/ME, BUT I’M NOT PATIENT WHEN I EAT…I GO NUTS STARING AT MY FOOD. SO, I’VE LEARNED HOW 2 LEAN FWD, GRAB MY CUP OR PLATE, & FEED MYSELF! I KNOW I MAKE A MESS, & IT TAKES LONGER 4 ME 2 FEED MYSELF IN THE LONG RUN, BUT IT’S DIFFERENT. MORE BEARABLE SOMEHOW! I CAN DO, OR WILL AT LEAST TRY, ALMOST ALL FOODS, EXCEPT SOUP & CEREAL, & I’M NOT GREAT W/SALAD…BUT IT NEEDS 2 BE ON A PAPER/PLASTIC PLATE ON MY LAP (SO, I CAN’T DO IT IN CERTAIN PLACES, & IT DEPENDS WHAT I’M WEARING.) BUT SOMETIMES IT’S STILL NICE 2 BE FED-DEPENDS ON MY MOOD (LIKE IF I’M TIRED–IT’S HARD WORK!), & IF THE POTENTIAL IS THERE 4 A HUGE MESS. IT’S JUST SOMETIMES A NICE BREAK! BUT IF I CAN’T FEED MYSELF, MK FINDS SOMETHING (USUALLY BREAD OR A ROLL). THAT MAKES IT WAY MORE BEARABLE 2 NOT FEED MYSELF!

I TAKE PRIDE ON THE DAYS THAT I MANAGE 2 FEED MYSELF EVERY MEAL! LOL IN FACT, I AM ENJOYING IT 2 MUCH, & WENT THROUGH A SPURT WHERE I SEEMED 2 BE ENJOYING THINGS THAT I’VE MISSED 4 FAR 2 LONG! THEN, I WENT ON A DIET, & LOST LIKE 40 LBS.! LOL (IT WAS PORTION CONTROL, SO I NEVER COMPLETELY GAVE UP EVERYTHING, THOUGH I DID WATCH WHAT I GRABBED, & DRIED FRUIT BECAME A BEST FRIEND, 2 REPLACE MOST CHOCOLATE)

FRIDAY

JESS’ B-DAY WAS FEB. 4TH. NOT ONLY COULD I TELL HER “HAPPY BIRTHDAY” WITH WORDS, BUT IT SNOWED A TEENSY BIT (A DUSTING REALLY), & SCHOOL WAS CANCELLED! 2 HER, IT WAS THE BEST B-DAY EVER!

THEN, JESS AND SOPHIA PERFORMED LAST FRI. NIGHT (FEB 11) AT THE LAKE POINTE ELEM. TALENT SHOW, SINGING A DUET THEY ARRANGED FROM THE SONG POPULAR FROM WICKED:

MY MOM INSISTS IT IS LIKE SEEING MY SISTER & I ALL OVER AGAIN! BUT I MUST SAY, EVERY1 IN MY FAMILY HAS A UNIQUE WAY 2 SHOW THEIR MUSICALITY, & WHILE MK IS NOT A SINGER/DANCER, HE TRULY SHOWED MUSICAL TALENT IN OTHER WAYS, LIKE COMPOSING. I THINK THEY GOT TALENT FROM BOTH OF US!

I GIVE MK TONS OF CREDIT 4 HOW WELL IT WENT…I SIMPLY GAVE THEM A SINGING TALENT, BUT I LEFT IF THEY PRACTICED–IT WAS 2 FRUSTRATING 2 STAY! (BECUZ I’D START 2 IMAGINE DANCE MOVES, BUT COULDN’T EXPLAIN HOW 2 DO THEM, OR SING THE PART OF THE SONG WHERE IT WENT.) IF I STAYED, I’D HAVE A PBA OUTBURST FROM FRUSTRATION.

BUT I WAS ALWAYS W/IN EARSHOT (THEY HAVE A SET OF LUNGS THAT I’M JEALOUS OF, & THEY COULD PRACTICE IN THE KITCHEN UPSTAIRS, & I HEARD EVERY WORD CLEARLY DOWNSTAIRS, ON MY COMPUTER!), WHICH TOTALLY HELPED MY PBA AT THE PERFORMANCE, SO I WAS ABLE 2 ACTUALLY WATCH & SMILE, NOT CRY!

BTW, BIG THANKS, TOO, TO THEIR UNCLE ROB FOR HELPING WITH THE MUSIC AUNT TASHA WITH CHOREOGRAPHY, ZACH VIDEOTAPING, AUNT TASHA & AUNT NICOLE FOR HAIR AND MAKEUP, & ALL WHO LET THEM PRACTICE W/AN “AUDIENCE