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Post by Jackie on Jun 24, 2009 17:35:55 GMT -5
I agree Susan...don't go back. You dont need a referral for an orthodontist. I did get in touch with Sujeets mom and she agreed with doing all the things our dentist here said Em would benefit from...the things the doc in Austin said not worth doing.
Susan don't know about your "cater to cowards" dentists but i think its a chain and frankly probably the better dentists are out in private practice.
Jackie
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Post by Jackie on Jun 24, 2009 13:13:04 GMT -5
Susan knows MY story with Emily. When you have medicaid that goes with your SSI... that you get at 18... you get 1000 for yearly dental. It is a great big HUGE ripoff IMHO. Almost any dentist will take Emily but they all want the entire sum. They say they will see her twice a year. NOW how many of us ever spend 1000 a year on dental hygiene which is what her needs are. The last dentist she saw I visited with long distance on the phone and he as much as said...I never do much for people with DS because they just dont take care of their mouths. He then went on to tell me that they could do some things like seal her teeth etc ...but it probably wasnt worth? ? it? ? (by the way he took 500 of her money and did a few xrays and cleaned) I was furious but Katie had asked me to be nice because they lived near them in the neighborhood. However they have now moved to a HUGE home out by a lake...so....He told me he took a number of medicaid pts as a 'favor' to the community. Yea...at 1000 a pop and half a Friday dedicated to these patients ...it IS quite a favor ...but IMHO again...to HIM. I am sure there ARE excellent dentists but for some reason I always feel like I am being taken advantage of when I take Emily. She did have a very nice and reasonable local dentist here. It was his recommendation that she have a few preventitive things done but he suggested we have them done in Austin where she lives now. That is why we went to the other dude. I think we need to report these things and I am sorry now I didnt immediately call up someone and do this.
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Post by Jackie on Jun 24, 2009 8:58:30 GMT -5
Funny story about computers...I am an artist now cuz of the computer. Back in 2000 I could only email and maybe do a post here on UNO. My kids made fun of me...and Ed was not that understanding about why I wasn't more interested in cyberspace. So I went up to our community college and tried to enroll in a computer class. Mind you I already have a BS in Occupational Therapy and about 27 extra undergrad hrs. Well they had to process me in like a new student...transcripts and all that...then a friend who is a counselor there said "Why would you just take a boring old computer class? Why not do something fun with it like go into graphic design?" She said..."didn't you like art in HS?" and I said "Nancy I did...but remember...we graduated in 1964!"
Long story short I enrolled in it...and liked it at first but then realized I really was not comfortable enough on the computer with all those 18 yr old computer whizzes...I was still plodding along. I could create beautifully but had no earthly idea how or where to save my work. My 50 yr old brain just didnt want to learn that fast. So about that time I discovered the word 'audit'...and started auditing just the ART part of graphic design and found my lifes calling. ;D
I am sorry now I didnt finish with illustrator and photoshop and other classes but I am now much more comfortable on the PC. Still dont know that much but its enough. My learning however made me aware of how much a computer can aid us in a lot of things we do. Emily has learned to use it to find out all manner of things she needs to know (and probably some she doesn't LOL).
I think schools now understand this need and try it more in terms of people with special needs. When Em was in HS most of the teachers were still afraid of computers still and only the computer teacher had a computer. We have come a long way in just a few years.
Jackie
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Post by Jackie on Jun 23, 2009 15:33:53 GMT -5
I have been having back and forth dialogue with Em about Johnny Depp. Looks like soon we can move along from Jack Sparrow to The Mad Hatter...LOL. Anyhow apparently J.Depp is going to be on Letterman this week. I emailed Em but told her I didn't know which night. She watched last night and emailed me it was another actor ("actir"). So I emailed back that I suggested she look up David Letterman Show or CBS Late Show and look at the weeks guest lineup. She must have done that because she emailed me back he was going to be on Thursday (at least I think thats what she said).
I was impressed at her ability to do this and so was Katie. But Emily often turns to cyberspace these days to find out what she needs to know. Like I have said before I wish the school had paid more attention to my suggestions about teaching her more about the computer. She is self taught and doing a pretty good job although she still hunts and pecks on the keyboard.
Some of your kids may already be adept at doing activities like this but I am still impressed when Em forges ahead and discovers things like this for herself. I think we need to encourage our schools to get our kids with DS on the computer as soon as they are able.
Jackie
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Post by Jackie on Jun 22, 2009 15:11:10 GMT -5
you all need to read the Jodi Picoult book HANDLE WITH CARE
Sounds to me like they read it and did this lawsuit.
Jackie
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Post by Jackie on Jun 22, 2009 8:54:59 GMT -5
Thanks Char...we love her...LOL. Actually the best part of Fathers Day for me was the phone call she made to ED. He handed her off to me after a few and we had a delightful chat. Turns out she is totally excited over Johnny Depps upcoming movie Alice in Wonderland. I talked to Katie and she had no idea Em was researching this online. It makes me feel good that she is full of info about it because it means she is reading the websites. I think the PC has been really good for her reading skills. Em read ok in school but what she reads for pleasure now is magazines (LOTS of them) and websites. I have always been jealous of Susan's Emily reading for pleasure and wished my Em would pick up a book every now and then. So I really enjoyed fathers day because I got to talk to my girl! ;D
Jackie
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Post by Jackie on Jun 21, 2009 11:16:38 GMT -5
Bob...of course I am thinking about YOU as I make this post since we all seem to focus on womens issues all the time. Hope you are having a great and much deserved Day...let us hear about it.
Ed opened his hand made card from Emily this AM and the best part was NOT the gift card to Olive Garden that she was soooooo excited about, but the inscription which said "TWODAD"...lol
Happy Fathers Day
Jackie
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Post by Jackie on Jun 21, 2009 7:44:55 GMT -5
Oh please do not mis understand me CC. These conferences are Wonderful!!!! I am only speaking of myself in terms of not being able to sit thru long workshops and focus the way I used to. I personally think EVERYONE here should attend at least once . You meet so many neat people and the presenters are usually excellent.
The NDSC has a policy that anyone attending must register. That is how they can afford to put on these huge undertakings. Of course there are always some who dont...and often I see those people sneaking into the workshops and it really bums me out.
My thoughts are that now that Em is grown and our situation is pretty much set...and we are not seeking new and innovative things for her anylonger, that many of these workshops now ...good as they are...are lost on me because I am no longer in a situation where I can come back and share the info with those who really need it. All of you on this board would profit from going. And YES there are some workshops that WOULD benefit Emily. However we are happy with where we are at the moment and not ready to chase another rainbow in terms of seeking the most perfect situations. I did this for years and years and I do NOT regret one single moment of it. It has earned me the right to sit back now for a bit and let others continue marching. And largely due to info I gleaned from the NDSC meetings and people I met there Emily has had a great life.
CC Chris is only 16...you have years and years to go and learn...I think you should.
I am going because the Youth and Adult meetings are something that Emily really looks foreward to. There are all levels of kids in these meetings and it seems to work well for all of them. I think Chris would love this.
Jackie
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mural
Jun 21, 2009 7:33:37 GMT -5
Post by Jackie on Jun 21, 2009 7:33:37 GMT -5
well we are working on the payment angle for sure. Em IMd me yesterday that she had helped paint a set of shelves for the directors office at art. She said she loved painting furniture and she did some sort of lollipop on it I think...Tony said it was really good and he was impressed.
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Post by Jackie on Jun 19, 2009 15:34:18 GMT -5
Debbie...speak up at the meeting Saturday and make sure they try and send someone to the conf. I didn't ask because I have not been active, but we really should be sending someone every year.
Jackie
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Post by Jackie on Jun 19, 2009 15:33:20 GMT -5
ok...funny ...even tho the website said closed for banquet tickets...seems they have them...Can already feel my back aching thru all those speakers...LOL
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Post by Jackie on Jun 18, 2009 17:31:33 GMT -5
well I did the right thing and registered...like is said...probably just buying myself an expensive name tag and a compendium...LOL. Also waited so long to register that there are no more banquet tickets...so...guess we will be making reservations somewhere...bet Em wont care and we can show up later for the dance.
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Post by Jackie on Jun 18, 2009 16:44:29 GMT -5
Great pics...thanks for sharing ...looks like a really fun and exciting day.
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Post by Jackie on Jun 17, 2009 9:18:26 GMT -5
Sounds like a full live and a nice summer shaping up...be sure to leave time to enjoy it.
Jackie
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Post by Jackie on Jun 16, 2009 14:32:58 GMT -5
Jodi...this really breaks my heart too. It touches home because a woman who was my best friend some years ago had a son who was in the state school. He had reactions to his baby shots and well...you know the story I am sure. She 'placed' him because he had grown too big for her to take care of him alone but he still had no communication skills etc. I went with her to see him once and he was just skin and bones. He could only use one arm to feed himself and turns out that arm had a broken collarbone and when we took him with us...found out he was also covered with cigarette burns. How she could ever have gone home and left him is beyond me...and we stopped being friends pretty shortly after all that.
Communication is such an important skill...and recognition of abuse for what it is...abuse...along with it. And leaving things beyond your uncles reach is just that ...abuse.
I am so sorry he had to go thru this and that you had to witness it. Be assured that I am passing this along to one of my daughers who works in a hospital so that she can tell the story to others she works with. Sometimes I just think people are totally thoughtless...or clueless, and other times I think they are just plain cruel in situations like this.
I am so glad that your uncle has YOU ...hard as it may be on you.
Will be thinking about you
Jackie
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