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Post by ooginal on Jun 11, 2004 22:32:32 GMT -5
Thank you for the compliment Debbie. It was published in the International Mosaic Down Syndrome Newletter. But, it is so long that they are doing it in parts... I think if Daniel's Story has one thing to offer, it is the section about our experiences with the social security administration. I outlined the extreme difficulty we had getting help for Daniel...The walls and roadblocks we had to overcome before assistance was made available to him...It also let's people know that if you get a NO answer, and you fight them, you will most likely win... But, I believe, they want you to fight them.... It seemed that way to me...Others may have a different experience.....
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Post by ooginal on Jun 11, 2004 16:34:27 GMT -5
Thanks Jackie - I'm not sure on another day if he would have done the same.... Danny hates coins and can't get rid of them fast enough...Never uses them - ever....They just get in the way.... Everything goes in his wallet and the coins just keep falling out - so he don't want them. We have a big, two and a half gallon jar he puts his coins in and his momma told him - when it's full - you can use that money to go to Disneyland... So, he's working that trip hard and heavy.... Out of curiosity, when is Emily's birthday...Daniel is also 24. But not for long.... He's going to Kiwanis Camp at Mt Hood from 20-25 Jun 04 and I'm scared to death...Hiking, swimming and who knows what else they will do...(catch snakes??)... I always want to be with him when he swims and this time - I won't be. My heart and thoughts will be though... Thanks again for your reply Jackie... Bob (Dan's dad) Nail biting time....
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Post by ooginal on Jun 11, 2004 15:42:43 GMT -5
Daniel surprised me the other day.... He took $80.00 (4 twenties) out of the bank to buy an annual pass to the Newport Aquarium.... When the lady who sold the passes said that it would be $55.00.... I asked Daniel, "how much will you give her"....I thought for sure he would give her the four twenties which he tightly gripped in his hand....He said $60 Dad and I was floored... He is used to dealing with fives and tens, but never that much money...... Since he was a small guy... it appeared like he would never understand money well at all...But, NOW, it appears he's getting it.....Hallejula. The lesson in all of this....is that the progress comes, but it usually comes slower for those with DS... and we the parents are so anxious...at least I am. Daniel will be 25 years old next month...
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Post by ooginal on Jun 11, 2004 15:30:50 GMT -5
A very nice poem Cindy.... In the very center and deepest part of our heart is our child/children.... They make our life full, rich and warm..... Your love for Kaylee is wonderful.....
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Post by ooginal on Jun 11, 2004 17:51:21 GMT -5
Hi JMom,
I'm Bob and I also have only one child and he too - has DS.... We live in South Beach, Oregon and also are new members to Uno Mas....Welcome !!!!! Bob
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Post by ooginal on Jun 10, 2004 14:54:40 GMT -5
Absotively - Daniel most definitely has super flat feet. Never walks by touching his heel first...
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Post by ooginal on Jun 8, 2004 11:04:57 GMT -5
In one of the other posts, I read about an Uno Mas member who ran into someone in public who said to them a cure for DS had been found.... Not long ago, I read a newspaper article in which the author very ignorantly made this announcement when referring to the DS/Aricept study... Having a son who completed this clinical drug study (which is on going) I was shocked to hear how some dummy misconstrued an ongoing study for a cure..... The study is hardly over, the results not in, and the findings have not been announced. Duke University is heading up the Aricept/DS Study... Besides our personal experience with Aricept, we are also in contact with two other families that had a child involved in the same study... The bottom line was that all 3 families felt that Aricept did moderately improve their childs cognitive skills. However, it is no miracle drug and certainly not a cure....I'm afraid that the person who wrote that article didn't have nearly enough facts and unwisely and very incorrectly told the WORLD that a cure had been found..... Since taking Aricept, Daniel is more alert and more likely to challenge things that don't seem right to him... He does listen better and we have been surprised and proud to hear him use words and sentences he would not have normally used prior to taking Aricept... Keep in mind that Aricept has not changed Daniel in a very substantial and dramatic way....but, we are happy and grateful for the improvements we have seen.... Aricept... has a number of potential side effects...Danny has experienced several of them...He can be mouthy (smart alec).......Pror to taking Aricept, he was never mouthy and always respectful... For example: 2 hours after taking his very first pill, I asked him where his Mom was, and he said "she's taking a leak"..... He NEVER EVER would have said that prior to popping his Aricept... The other day he was talking to his sister on the phone and called her two boys "Cain and Abel" He didn't hear that from us - I'll tell you.... I call them Osama and Hussein...but never Cain and Abel.... So, the attitude might have come from me but the choice of words he gets all the credit for.... He has more trouble sleeping since the study...averaging about 2 hours less sleep a day and he complains about weird dreams...when I ask him to tell me about his dreams they don't seem weird to me at all...I just think that the Aricept causes him to remember his dreams after he wakes up.... So, this kind of lets you know where we are with Aricept and why some people out there think a cure has been found for DS...... Bob, Danny's Papa, in South Beach, Oregon
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Post by ooginal on May 31, 2004 12:55:06 GMT -5
This whole thing is very sad... In Florida, where we lived, the special-ed students graduated right along side of everyone else. They receive a special diploma that looks just like everyone elses... Some go on to attend college. How narrow-minded, self-centered and arrogant they are....... They discredit themselves by being this way.... and they're hanging their ingnorance out for all to see.... If they have no intention of letting someone graduate, they have no business allowing these folks to attend only to tell them, after 4 long years, don't come to graduation..... Sounds like their operating out of the Freddy Flinstone era... This is soooooo sad.....
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Post by ooginal on May 29, 2004 9:13:54 GMT -5
Hello all, I am Bob McKinney, proud father of Daniel McKinney, 25 yrs, Mosaic Down Syndrome. My wife Pam (an ICU nurse), Danny and myself live in South Beach, Oregon. We moved here about 6 months ago from the Florida panhandle and just love it... Daniel works at Shangri-La in South Beach, one of a number of sheltered workshops in Oregon which are very similar to ARC. If you would like to see a picture of Danny at work..visit www.newportnewstimes.com/articles/2004/04/14/business/business01.txtI wrote a paper entitled Daniel's Story which covers our experiences with Daniel over the past 25 years. The paper covers many aspects of life, habits, diagnosis, school (special ed style), social security lessons learned, and mistakes I made along the way. I wrote the paper to give parents/family members with a younger DS child a glimpse of what MIGHT be ahead of them. Daniel's Story was too long to post on this site, but, if you would like me to e-mail it to you, I would be glad to. Just e-mail me at ooginal@cablespeed.com God Bless each of you, Bob McKinney « Last Edit: 05/19/2004 at 16:11:21 by ooginal »
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Post by ooginal on May 29, 2004 19:58:00 GMT -5
I knew a step-mother of child with DS who, would tear a bed apart after the boy made it. She would keep unmaking the bed each time he made it. Sometimes, this went on for hours. He might make the bed 15 times in one morning. She wanted it CCOORRRREECCTT.... Can he make a bed today? You betcha!!!! Is he scarred and haunted by that woman...YOU BETCHA !!!!! Did he feel loved by that woman - never, not even on a good day....She's dead now...Been dead a few years... natural causes by the way.... But she, with an iron fist, would make sure things were done the right way, the CCOORRRREECCTT WAY.... God has given us this child and TIME to train them. At home, they should be taught like they are in a special ed school. PATIENTLY & RESPECTFULLY, NEVER EXPECTING LOTS OF PROGRESS IN ANY ONE GIVEN DAY... the progress comes, but it comes slowly. Some parents won't accept slowly... They will demand as much from their DS child as they do from their other children... If a parent has disciplinarian tendencies, they will be a disciplinarian EVEN with their DS child....
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Post by ooginal on May 29, 2004 12:08:54 GMT -5
In reality, we can't truly know any child's limitations, especially a child with DS. The brain is made of millions of circuits and some circuits work well and some don't work at all. Some struggle with math while others can baffle brilliant people with their math genius...Our strengths, our gifts, our limitations hinge on how well these circuits work... I am scared for children, especially DS children that have parents that think if I push and push my child, they will overcome their limitations....They will learn and be able to do a task simply because I want them to...... It's very hard to push and push your child and not show disappointment or frustration, even anger along the way.... When this occurs, they feel non-acceptance and they don't feel loved. These kind of parents can make life very difficult for that child, perhaps emotionally painful, during that path of parental molding. I have seen DS children that grew to adulthood that could work circles around their fellow non-DS coworkers... They were pushed and pushed and pushed for twenty or so years to be - All That They Could Be.... They were hardly happy people like so many with DS are... What good is it if your child exceeded those unknown limitations, rose to heights that few DS people will ever know, but couldn't look back and say passionately "My Momma and Daddy loved me - above all things in this life, I was loved... Parents can't really change who they are...If they are those type that push - they will continue to push.... Some may not care if their child was happy and felt loved - knew they were loved....Just so long as they found a good slot in the workforce and lived an independent life... Some will equate all of the pushing they do to love....How many times their child smiled or how often the child felt loved doesn't matter....This type of child raising scares me to death....
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Post by ooginal on Feb 19, 2005 9:36:13 GMT -5
Hello Jenn,
We will be praying for your Courtney until she is better.
The McKinney Family in Oregon
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Post by ooginal on Jun 28, 2004 13:05:19 GMT -5
Bob & Pam McKinney, parents to Daniel, 25, MDS.... We recently moved to the Oregon Coast (South Beach) from Pensacola, FL.... Daniel gets an awful lot from the state and federal government and we are grateful for that....But, we could hardly get any $$$ or services prior to his 18th birthday.... It seems that it is all on the parents until their child becomes 18 and then, the state and fed. govt. seem to take some responsibilty for their support when they become adults....This was our observation (limited - only lived in 3 different states with Danny - TX, FL & OR)...When Daniel turned 18, we pursued getting him SSI...The SSA had him examined and "THEIR" doctors found Daniel "FIT and FINE"...... LIES, LIES, LIES......We bugged the heck out of SSA and they had him rexamined and he was found to be mentally incapacitated.....I dont know if your experience will mirror ours when your child turns 18, BUT - don't give up.... Just like a fisherman...SSA likes a good fight and sometimes that is what it takes to get them to see the need and to start providing support and services....
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Post by ooginal on May 19, 2004 14:54:48 GMT -5
I am Bob McKinney, proud father of Daniel McKinney, 25 yrs, Mosaic Down Syndrome. My wife Pam (an ICU nurse), Danny and myself live in South Beach, Oregon. We moved here about 6 months ago from the Florida panhandle and just love it... Daniel works at Shangri-La in South Beach, one of a number of sheltered workshops in Oregon which are very similar to ARC. If you would like to see a picture of Danny at work..visit www.newportnewstimes.com/articles/2004/04/14/business/business01.txtI wrote a paper entitled Daniel's Story which covers our experiences with Daniel over the past 25 years. The paper covers many aspects of life, diagnosis, school, social security lessons learned, etc. I wrote the paper to give parents/family members with a younger DS child a glimpse of what MIGHT be ahead of them. Daniel's Story was too long to post on this site, but, if you would like me to e-mail it to you, I would be glad to. Just e-mail me at ooginal@cablespeed.com God Bless each of you, Bob McKinney
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Post by ooginal on May 19, 2004 14:54:48 GMT -5
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