Update

THE ABILITIES EXPO

THIS LAST WEEK, I’M PROUD 2 SAY THAT I CLEANED UP LUNCH:
• PUT SILVERWARE IN SINK
• PUT LIDS ON THE PB&J
• TWIST TIE THE BREAD—NOT GREAT, & IT TOOK FOREVER, BUT I DID IT, EVENTUALLY!
• TRASHED PARCHMENT PAPER, AFTER SANDWICHES WERE MADE ON IT
• SQUEEZE OUT & WIPED THE COUNTER (IT WASN’T GREAT, BUT AT LEAST I SAW THE CRUMBS, SO I KNEW TO TRY!)

THE PREVIOUS WEEKEND, I ATTENDED THE ABILITIES EXPO IN HOUSTON. I SAW MANY EXCITING THINGS! 4 THOSE WHO COULDN’T GO, BUT WOULD’VE LIKED TO GO, I THOUGHT I’D SHARE SOME OF THE LINKS & INFO I GATHERED…

I REALLY LIKED THE WALKERS, BUT THEY MAY BE A LITTLE AHEAD OF MY GAME…NOT SURE IF I SHOULD 1ST JUST STAND A WHOLE LOT, & GAIN SOME TRUNK SUPPORT TOO! SO HERE’S WHAT I SAW THAT I LIKED:

walkers:
http://litegait.com/md.html (lift & potty too, but it probably requires more trunk support than I have)
http://mulhollandinc.com/products/walkabout-1/

standing wheelchairs–
http://www.youtube.com/watch/?v=vk2ftaWqVKI –questions I had after seeing this: does it have lights? & can i use my computer w/it?
http://www.youtube.com/watch?v=ZlMvlaSzoxg –i know it has lights, but does it recline as far as my current chair? & can i use my computer w/it?

http://www.frankmobility.com -the duet bike
http://www.kx2devices.com -Foot drop,
to find horse therapy, I was told 2 look up “professional association of horsemanship international PATH integration (I couldn’t read the rest!)”
http://www.motoathome.com – motomed therapy bike, viva 2 light—I liked the clinical, not the home one!
http://www.dodgen-bornfreecom.com –accessible RV
http://www.adaptivedriving.com ? -accessible truck
http://www.myellura.com -urinary tract medicine
http://www.kinovausa.com -robotic arm
I LIKED THE VOICE CARRY OVER TELEPHONES, THAT SPEAK WHAT U TYPE, BUT I’M NOT THE FASTEST TYPER!
http://www.unitedspinal.org -had a cool packet about “disability etiquette” –here’s a PDF of it: http://www.unitedspinal.org/pdf/DisabilityEtiquette.pdf )

BUT THE TRAVEL STUFF WAS LAME-MY HUSBAND, MK, COULD HAVE SET UP A BOOTH & SHARED MORE THAN THEY DID! I HAD REAL QUESTIONS, 2 FIGURE OUT HOW & WHERE 2 GO 2 MAKE TRAVEL MORE ACCESSIBLE, BUT THEY WERE JUST SELLING GROUP TRIPS…& SORRY, MAYBE THIS IS GOING AGAINST “MY OWN KIND,” BUT AFTER BEING IN A CONVENTION FULL OF WHEELCHAIRS, THERE IS NO WAY I’M GOING ON A VACATION WITH TONS OF WHEELCHAIRS!

Everyone has a “voice”

SONY DSC
OUR UKRANIAN VISITOR, DIMA, HAS STARTED 2 FIGURE OUT THAT I SPEAK ENGLISH AS WELL AS HE DOES (ONLY MY “ACCENT” IS SLURRING WORDS), & THAT I COMMUNICATE W/ACTIONS & THROUGH THE COMPUTER LIKE HIM, BUT I THINK YESTERDAY WAS A BIT OF A TURNING POINT: HE SAW MY HUMOR, SO HE LAUGHS AT WHAT I SAY MORE, IF IT WAS MEANT 2 BE FUNNY, & TODAY, HE LAUGHED AT THE FUNNY PICTURE ON MY SHIRT-WHICH I HAVE WORN B4!

PLUS, I WAS ABLE 2 SPEAK REALLY WELL YESTERDAY, & THE COMPUTER GUY WHO HELPS ME, UNDERSTOOD A LOT, WHICH SEEMED 2 OPEN HIS EYES. & I DON’T THINK HE’S SEEN ME WRITE B4, BUT HE PICKED UP THAT I WROTE WHAT I COULDN’T SAY, & I THINK HE WAS ABLE 2 SEE MORE HOW IT IS JUST AS DIFFICULT 4 ME 2 COMMUNICATE AS IT IS 4 HIM.

ALSO, I JUST RETURNED FROM A LYNN FAMILY REUNION IN DESTIN, FL. I WAS SO IMPRESSED BY HOW OUR VISITORS FROM THE UKRAINE WERE JUST TAKEN IN, & I REALIZED HOW FORTUNATE I AM!

Everyone has a “voice” even the non verbal because a personas true voice Isn’t in the things they say. Its in their actions, thoughts and feelings.
“People with Disabilities Rock” FB Page

WHILE THERE, I SAW A SHOW THAT POSED THIS QUESTION: “WOULD A GOD WHO LOVES U DO (SUCH & SUCH)?”

I GUESS I COULD ASK IF A GOD WHO LOVES ME WOULD LET ME HAVE A STROKE, & DENY ME MANY THINGS IN LIFE. I DON’T KNOW IF HE DID OR NOT: POSSIBLY HE DID, CUZ HE LOVED ME ENOUGH 2 LET ME SUFFER SO I COULD GROW…
(I CAN’T FIND IT, BUT I WANTED 2 INSERT A QUOTE ABOUT HOW GLAD WE ARE THAT GOD LOVED US ENOUGH TO NOT GIVE IN WHEN IT GOT HARD & CHRIST WAS PLEADING TO REMOVE THIS CUP, & LET CHRIST BE CRUCIFIED/SUFFER)

BUT WHETHER OR NOT HE DID, GOD MADE SURE 2 PLACE ME IN A LOVING FAMILY, & MARRY INTO A LOVING FAMILY. NOT A DAY WENT BY WHERE I WAS NOT IN WAS BY GOD’S LOVE 4 ME, EITHER THROUGH MY HUSBAND, MK, OR THROUGH AN EXTENDED FAMILY MEMBER. THE IMPORTANCE OF THIS IS HUGE. I NEVER REALIZED HOW HUGE, UNTIL RECENTLY. I WAS NOT LEFT ALONE, OR PUT IN A DIFFICULT SITUATION WHERE I COULDN’T FEEL GOD’S LOVE!

INTRODUCING…

4 SEVERAL DAYS NOW, I HAVE BEEN TRYING 2 WRITE A POST ABOUT THE NEW ADDITIONS TO OUR FAMILY 4 THE SUMMER (OVER THE WEEKEND, WE PICKED UP 2 KIDS FROM THE UKRAINE, DIMA & MAYA). BUT LIFE CHANGES DAILY, SO BY THE TIME I FINISH WRITING A POST, & HAVE THE OPPORTUNITY 2 POST IT, IT IS OUT OF DATE!

ANYWAY, ZACH, WHO USED TO BE SHORT, UNTIL HE HAD HIS RECENT GROWTH SPURT, IS A GIANT, & EVEN SOPH, WHO IS YOUNGER THAN 1 OF THEM, IS STILL BIGGER THAN BOTH OF THEM! DIMA & MAYA DON’T SPEAK ENGLISH–YET—BUT THEY ARE LEARNING! SAT. NIGHT, AS I WATCHED MY FAMILY ATTEMPT TO COMMUNICATE WITH THEM, I GOT A HUGE KICK OUT OF SEEING EVERY1 DEAL W/THE COMMUNICATION BARRIER THAT I DEAL WITH DAILY. BUT I BET THEY WILL PICK UP ENGLISH SUPER FAST, OUT OF NECESSITY, CUZ THAT’S LIKE ME NOT BEING ABLE 2 SIGN EVERY DAY (& I DO ONLY 1-2 “NO SIGNING DAYS” A WEEK)! BUT I’M GLAD DIMA & MAYA HAVE EACH OTHER–THAT COMMUNICATION BARRIER IS LONELY & TOUGH ALONE!

IT’S ALWAYS INTERESTING WHEN PEOPLE MEET ME, & SINCE THESE KIDS DON’T KNOW ME, & WE CAN’T FULLY EXPLAIN ME TO THEM, IT HAS TAKEN AWHILE 4 THEM 2 “GET” ME, BUT WE PLAYED A GAME LAST NIGHT THAT I THINK HELPED THEM TO UNDERSTAND ME BETTER, & I HAVE BEEN MAKING AN EFFORT 2 COMMUNICATE MORE WITH THEM—AFTERALL, THEY SPEAK 2 EVERY1 ELSE “MY WAY”—BY TYPING ON GOOGLE TRANSLATE ON THE IPAD), OR THEY PANTOMINE/SIGN.

AT THE AIRPORT, I WAS ALREADY USED 2 PEOPLE NOT BEING SURE HOW 2 REACT 2 ME, SO I WAS FINE W/MEETING THEM. BUT WHEN WE MET THEM, I GOT THIS OVERWHELMING FEELING THAT GOD PERSONALLY KNOWS THEM, & SENT THEM TO US. I HAVE NO IDEA WHY THEY WERE SENT TO US, & WHILE I HAVE ALWAYS BELIEVED THAT I WAS A CHILD OF GOD, IT WAS WONDERFUL TO KNOW THAT GOD KNEW THEM TOO, & CARED ABOUT WHAT HAPPENS 2 THEM, TOO!

THE SPEECH BATTLE CONTINUES…

IT HAS BEEN AWHILE! I’VE BEEN CRAZY BUSY, BUT I DECIDED TO PUT EVERYTHING ON HOLD, & TAKE A MOMENT FOR MYSELF!

MY ROUTINE CHANGED LAST MONTH, SO I WAS GETTING UP 1-2 HOURS L8R (I READ THE SCRIPTURES WHEN MK GOES 2 TEACH SEMINARY AT 6 AM, & THEN WARM-UP MY VOICE AS HE DRIVES KIDS TO SCHOOL.) BUT SEMINARY ENDED FOR THE SUMMER LAST MONTH, & SO DID MY ROUTINE…

THEN, I WAS SO VERY BUSY, & WITH ME STARTING LATER IN THE DAY, I JUST SKIPPED THE THINGS THAT WOULD PUT MY ROUTINE BACK ON TRACK, SAYING THAT I’D READ MY SCRIPTURES & PRACTICE VOCALIZING L8R IN THE DAY…WHICH WAS EASY TO DO CUZ I WAS SICK, SO I WAS TOO TIRED & CONGESTED 2 VOCALIZE, & SINCE I STARTED MY DAY L8R, I WAS “ANTSY” & WANTED 2 “CATCH UP.” SO, I SKIPPED VOCALIZING & READING MY SCRIPTURES DAILY, & I ONLY DID 1 NO SIGNING DAY A WEEK (IT WAS 2 DAYS BEFORE, BUT I PICKED THE 2ND DAY, SO I STOPPED PICKING A DAY, & ONLY STAYED WITH THE DAY THAT WAS ANTCIPATED).

BUT IF I TRIED 2 PRACTICE L8R IN THE DAY, BY THE TIME I TRIED, I WAS TOO TIRED & DID THE BARE MINIMUM! I JUST DIDN’T PRACTICE AS MUCH AS I COULD HAVE.

LATELY, I’VE FOUND MYSELF WONDERING WHY I HAD SIGNED SOME THINGS THAT I COULD’VE SAID–& I WASN’T SURE IF IT WAS A LACK OF FAITH/TRUST IN MYSELF, IF I WAS LAZY & DIDN’T WANT 2 PUT FORTH THE EFFORT THAT SPEAKING REQUIRES, OR IF I JUST WANTED 2 HURRY & NOT PLAY THE GUESSING GAME CALLED “WHAT DID SHE SAY?”! SO, WHEN I’VE PRACTICED VOCALIZING, IT CAN BE DISAPPOINTING HOW SHALLOW MY BREATHING IS NOW! THERE’LL BE DAYS I PRACTICE MORE, & MY BREATHING INCREASES, BUT IF I MISS JUST 1 DAY, IT’S LIKE FALLING DOWN A LADDER! & I HAVE GOTTEN SO BUSY, IT IS HARD TO KEEP CLIMBING BACK UP TO WHERE I WAS!

WEDNESDAY, IT WAS SUPPOSED TO BE A NO SIGNING DAY, & I TRIED, EVEN THOUGH THERE WAS STILL MUCOS IN MY LUNGS (I WAS SICK LIKE 3 WEEKS AGO!), BUT CUZ OF THE MUCOS, NOTHING WOULD COME OUT, & I COULD ONLY MOUTH THE WORDS! THEN, FROM 9-1 I WAS SUPPOSED TO WHISPER, & SINCE I CAN’T WHISPER, I SIGNED & WROTE…I PLANNED TO SPEAK THE REST OF THE DAY, BUT FROM 1-4:30 I WAS AT 6 FLAGS, & IT WAS TOO LOUD TO HEAR ME, PLUS THE HEAT/SUN ZAPPED MY ENERGY, SO I DIDN’T HAVE THE ENERGY TO TALK! (I WAS STILL RECOVERING AT 6 PM!)

I CAN BLAME IT ON THINGS LIKE THE MUCOS & SUN/HEAT WHY I FAILED AT A NO SIGNING DAY, BUT I THINK IT REALLY IS BECUZ I HAVE NOT PUT MY FULL EFFORT TOWARDS SPEAKING, SO IT HAS WEAKENED ENOUGH WHERE MUCOS, THE SUN, & THE HEAT ARE REALLY & TRULY FACTORS THAT INHIBIT MY SPEAKING.

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!