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Post by mollysmomma on Aug 3, 2007 16:15:04 GMT -5
all we can do is teach..i really DIDNT know much about DS, until molly...not in detail anyway.
I do know how you feel, though...cuz when i called social security and told them about her diagnosis....the woman answering the phone screeched "OMG! IM SO SORRY!! Small town...she knew me, and i guess was being a friend in her sympathy....that was the last time I allowed myself to be stunned into silence! WTG with the 'WHAT FOR?" Good question!
not very professional, huh! I learned real fast to think of the responses...and have them ready, so they will roll off my tongue...bypassing my SHOCK factor! Even today...some 'other' walked up and asked me if i was with 'this special ed thing' I explained to her that this was the National Conference for people with Downs Syndrome...to which she smarted off....yea, i know people like that!".....confusing for sure, but really? she wasnt worth the effort. Im selective about WHO i teach, also...and yes, some of the older ones are never gonna understand.
We keep on...keepin on.
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Post by mollysmomma on Aug 3, 2007 16:46:01 GMT -5
wow...i didnt read this before i left, and after looking at you today...FOOLED ME! you looked like you didnt have a care in the world! hahaha!!
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Post by mollysmomma on Nov 23, 2007 10:35:24 GMT -5
anyone using good -easy to use-software tools for 7 year olds?
she hates the puter at school...but loves it at home
same with the music class UGH!
what are yall using at school/home?
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The ABR
Jul 22, 2007 10:49:30 GMT -5
Post by mollysmomma on Jul 22, 2007 10:49:30 GMT -5
What a mess....and i do NOT know why i was surprised!
and FYI, ABR stands for:
Audioevoked Brainstem Response
Which is:
they put electrodes all over the head of intended victim (and in hair, so if you have to do it, make sure pony tails are situated high on top of head) sedate into a restfull sleep, but NOT general anesthesia, and then place buds in her ears, which deliver tones that the brain reads. They measure all spectrum of tones, from mid to 'only dogs can hear' levels, high and low...and are able to determine accurately the level of hearing loss that is present.
The doc reads these on a computer screen. You have to be totally asleep, as even the muscles that blink your eyes, distort her view of reading the brain's reception of the tones.
Add into that picture, molly the mule. Molly the mule REFUSED to go to sleep. Even though she was nestled safe in daddy's arm's...we were NOT at home, and there was a couple of strange women lurking in the darkened room.
They proceed to give her the ABSOLUTE MAXIMUM level of sodium pent/or something....'shoulda knocked out an elephant' but little did they know they were not dealing with an elephant....they were dealing with molly the MULE!
In conclusion...since she would NOT go to sleep...after TWO HOURS, NOT ONE SNORE...they have determined that there is no significant hearing loss...possibly some, but we'll never know...CUZ SHE WOULD NOT COOPERATE!!
and...it costs a thousand dollars....to NOT get the full details!
grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
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Post by mollysmomma on Jul 24, 2007 8:17:35 GMT -5
oh man!! i am SO PSYCHED!!
karen gaffny!! YAY!! advocate and english channel swimmer!!
I swam competitively for 10 years...all my kids are certified...and i was GLUED to her story!! Her dad was the man...i hope he's there!! and the other self advocate??? KEARNEY NEBRASKA!! my college town, about 30 min down the road from my HOME TOWN is where she lives!!
YAYAYAYAYA
gonna be grrrrrrrrrrrrrrrrrrrEAT!!
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Post by mollysmomma on Jul 18, 2007 13:36:39 GMT -5
PARENT- Job Description
POSITION : Mom, Mommy, Mama, Ma Dad, Daddy, Dada, Pa, Pop
JOB DESCRIPTION :
Long term, team players needed, for challenging permanent work in an, Often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include ev enings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities! Travel expenses not reimbursed. Extensive courier duties also required.
RESPONSIBILITIES :
The rest of your life. Must be willing to be hated, at least temporarily, until someone needs $5. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, an embarrassment the next. Must handle assembly and product safety testing of a half million cheap, plastic toys, and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product. Responsibilities also include floor maintenance and janitorial work throughout the facility.
POSSIBILITY FOR ADVANCEMENT & PROMOTION:
None. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you
PREVIOUS EXPERIENCE :
None required unfortunately. On-the-job training offered on a continually exhausting basis.
WAGES AND COMPENSATION :
Get this! You pay them!!! Offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help the m become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.
BENEFITS :
While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered; this job supplies limitless opportunities for personal growth and free hugs and kisses for life if you play your cards right.
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Post by mollysmomma on Jul 17, 2007 12:55:49 GMT -5
wow...it is a SHARED YAY!! anytime we can achieve the ABILITY to let our kids REALLY EXPRESS THEMSELVES!! WELL DONE, MOMMY!!
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Post by mollysmomma on Jul 16, 2007 15:57:53 GMT -5
Hes GORGEOUS!!
and looks VERY big brotherly in that shot....EXCELLENT!
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Post by mollysmomma on Jul 31, 2007 13:18:05 GMT -5
awwwwwwww jackie! im SO glad you're here....capris are PEDAL PUSHERS!! hahahaha
We'll stop in and say hey if at ALL possible! I'm keeping my files updated!! I just got the confirmation email from Westin...and my reservations were WRONG!! They fixed it right up...so be sure to LOOK AT IT! and next year??? BOSTON!! LOBSTERFEST!!! and the year after??? WORLD CONFERENCE IN IRELAND!!
Gives me 2 years to SAVE UP!
Im psyched...called my g/f in texas who is coming...all agog.."what time is your flight...do i need to come get you....blah blah blah" and ever the cool one, she tells me "that's problems for wednesday!"
Holee Molee...I think i'll just run up now....as i can't stand waiting ONE MORE DAY!
e (who may be old, but today feels like 5 and waiting for santa)
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Post by mollysmomma on Jul 16, 2007 9:16:20 GMT -5
ill add lexi to molly's prayer group! 5 months!! YAY!! you are REALLY close to being done with that bizness!
par tay.....we're gonna have a par-tay
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Post by mollysmomma on Jul 13, 2007 15:51:53 GMT -5
This is a repost from a mom who JUST lost her child to 'the beast' Told her I'd help spread the word...hope it's ok 308 July 12, 2007 at 10:05 PM CDT Hi everyone! We are still doing fairly well here. I am actually posting for a different reason. I was reading another site and saw some information that struck me as being very important. It relates to legislation for pediatric cancer research and treatment. A bill called the Conquer Childhood Cancer Act has been introduced in both the U.S. Senate and House of Representatives. The Senate bill is S.911 and the House bill is H.R.1553. The goal is to amend the Public Health Service Act to advance medical research and treatments into pediatric cancers, ensure patients and families have access to the current treatments and information regarding pediatric cancers, establish a population-based national childhood cancer database, and promote public awareness of pediatric cancers. Research is key in finding cures and treating children. There have been recent budget cuts that have hurt funding for pediatric cancer patients. There was not a cure in time for Cody, but there will not be one for other children either without research. It is vital. There is a place on the CureSearch website that gives more information and also has a way to write your Representatives and Senators. Things like this are very important to saving lives. I do not want any more families to be in the situation that Jamie and I are in. This is not a political thing...just something that is very close to my heart. Thanks everyone...I am sending letters myself. www.curesearch.org/
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Post by mollysmomma on Jul 13, 2007 15:32:28 GMT -5
molly won't wear NUTHIN!!
and she wanders, also....we just bought a safer house! (and locks and alarms...hehehehe)
i WANT A CHIP!!
implant it in her...beep....beep.....LoJack for the mollster
I'll let ya know!
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Post by mollysmomma on Jul 16, 2007 9:07:35 GMT -5
wow...i am SO with you on this...i just noticed at the end of school progam that molly has DOWNS!! HOlee MOlee... I dont know when it happened...she's always kept right up, and now she's lagging!! I feel SO bad about it, that i arranged to take the rest of summer off of work....im going to focus on potty training, and her speech... we work everyday on a little drafting table i converted to the 'learning corner' i dont know...i just know i feel INCREDIBLY guilty...as i work full time....and maybe it will help...maybe molly is just gonna be molly....but i feel like i really have to TRY! YWIM? i feel your stress, sistahhhhhhhhh e oh look, she helps me clean!! this is her very old, very favorite chair...and anyother mom would be FUMING that the sidewalk chalk got loose...but i'm thinking....hmmmmmmmmm circles!
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Post by mollysmomma on Jul 12, 2007 9:09:08 GMT -5
Dear Friends, I understand from Sharon Grigsby, editor of the Dallas Morning News Points section, that the paper will only publish responses to the article "A World with Difficult Blessings" which are sent directly to the paper,
letterstoeditor@dallasnews.com. To make evident your strong agreement with the points made in my article, it would be useful and effective for you to send any words that you wish you share with a greater audience to the paper ASAP. Perhaps more of these kinds of articles will be published. Gratefully, Virginia Arbery Julia's mom
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Post by mollysmomma on Jul 16, 2007 9:11:35 GMT -5
Yall are making me smile....cuz im the evil one
I'm thinking the next time a 'neuro tippy' is throwing the huge fit at the store...i should say...
im soooooooooooooooo sorry for this burden you have to bear!
hehehehehe
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