Contributing author to Gifts : Chapter 8


GIFTS - how to order
gifts

Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The Gifts Outreach program provides complimentary copies of Gifts to organizations which serve parents facing a new diagnosis of Down syndrome for their child, either prenatally or postnatally. We believe that the stories in the book provide a vital companionship and support for such parents.

2008 National Parenting Publications Awards (NAPPA): Gold Award

2008 Mom's Choice Awards: Silver Recipient, Special & Exceptional Needs































FEEDJIT Live Traffic Feed

Showing posts with label 31 for 21. Show all posts
Showing posts with label 31 for 21. Show all posts

Friday, October 19, 2007

10th Annual Buddy Walk- Get It Down 31 for 21: Post 19

Get It Down; 31 for 21


The 10th Annual IDSF Buddy Walk was a featured article in IndyChild magazine this month.
(Part of the "settlement" with the magazine over the horrendous episode last summer allows several articles about Down syndrome to be printed in Indy's Child.)

Update on the Buddy Walk: We raised over $180,000. and over 2400 attended, a record for us! thank you all!

Thursday, October 18, 2007

Down syndrome awareness- Get it Down 31 for 21: Post 18

Get It Down; 31 for 21

want attention..just mention

Mutts and Moms Ellen Degeneres britney spears

Gotcha.

Sunday, October 14, 2007

It still gets me - Get it Down 31 for 21: post 14

Get It Down; 31 for 21

This Montage still brings lumps.

Saturday, October 13, 2007

2007 IDSF Buddy Walk and IRL !- Get It Down 31 for 21: Post 13

Get It Down; 31 for 21




thank you all that traveled so far to see Indiana, the 2007 IDSF Buddy Walk, and each other. Over 2000 attended the Buddy Walk and raised at least 100K.

It truly was amazing seeing all the families that met via the internet, and gather for the Buddy Walk and tri21 IRL.

A few pics.











and how fantastic is this..Nash's Principal of his elementary came and walked!

The Dash with Nash team




Daddy and son...


the group at our house after the walk, with a cookout, hayride, exotic animal feed and fun!




Friday, October 12, 2007

Its Party Time! Get it Down 31 for 21: Post 12

Get It Down; 31 for 21

Buddy Walk weekend, IRL party, its time to clean up and have a PARTY!

Thursday, October 11, 2007

Another Couple with Down syndrome to Wed- Get it Down 31 for 21: Post 11

Get It Down; 31 for 21

Bernadette and Josh to Wed


Thursday, 10/11/07

Couple with Down syndrome prepare to wed
They expect their love to transcend limitations


By CLAUDIA PINTO
Staff Writer

Doctors referred to Gwenn Resha's baby as a "mongoloid idiot" and advised her to put the infant in a nursery and have another one real quick.

"They said nursery, but they were meaning institution," Resha said. "Back then, there was no expectation that people with Down syndrome would do anything but sit and vegetate."

Resha's daughter, Bernadette, has helped to debunk that once-widespread belief. The 28-year-old has graduated from high school, acted as a paid spokeswoman for Easter Seals and Special Olympics, appeared in the movie Gummo and become an accomplished artist whose paintings sell for hundreds of dollars.

On Nov. 11, she will do something else that experts a generation ago would not have thought possible: she is getting married to a man who also has Down syndrome.

Advocates say marriage is rare between two people with Down syndrome but becoming more common because of longer life spans made possible by medical advancements. Newer laws ensure their right to education and employment, which have made independence possible.

No one tracks the number of such marriages across the country.

"I don't know of any other couple with Down syndrome who have been married in Tennessee," said Sheila Moore, executive director of the Down Syndrome Association of Middle Tennessee.

"This is very exciting for Bernadette and Josh. It's also very exciting for the Down syndrome community. It's gives us hope and excitement that individuals with Down syndrome are having more opportunities and living more normal lives than ever before."

Bernadette Resha of Nashville and her fiancé, Josh Putman, of Mt. Juliet, seem unconcerned about being pioneers. They just want to be together.

"I like Bernadette. I love her like a wife," said Putman, 25. "Every time I met her, her is a good person, a good athlete. And her is a good artist."

Bernadette Resha responded to the kind words with a shy giggle and tenderly touched Putman's arm.

"He is my very close friend, boyfriend," she said. "I like for him to support me and be a good husband."

They had opportunities


Advocates say that Bernadette Resha and Putman are part of the first generation of children with Down syndrome who have had opportunities to be educated and employed.

Instead of living out their lives in an institution, they have been included in public schools. Their individualized education plans typically include employment training and instruction on how to live independently.

"Prior to 1975, it was not mandated for children with Down syndrome to be educated," said Madeleine Will, vice president of public policy for the National Down Syndrome Association.

"It's believed there were 1 million children with Down syndrome and other disabilities who weren't being educated."

In the early 1990s, the Americans with Disabilities Act required that accommodations be made in the workplace when possible, and prohibited discrimination.

As a result, "adults with Down syndrome are achieving more than ever before," Moore said. "They are graduating from high school. They are employed in our community."

In addition, medical advances have dramatically increased the life expectancy of people with Down syndrome. Will said that in the 1980s, whites with Down syndrome typically didn't live to the age of 25. That compares with an average lifespan of 55 today.

Down syndrome, caused by a chromosomal abnormality, comes with a host of medical conditions, including heart and digestive problems.

"Now almost all of these things can be corrected," Moore said.

While progress has been made, advocates say there are still many obstacles that people with Down syndrome face in getting married.

Will said the primary problem is that people with Down syndrome who choose to get married will receive one-quarter less in Supplemental Security Income, a federal program that gives money to people with disabilities who have little or no income.

"Sometimes they just move in together and don't get married because they can't afford it otherwise," Moore said.

Putman and Bernadette Resha will receive $300 less each month in federal benefits. That means their parents will have to provide them with additional financial support. In addition to Bernadette Resha's income as an artist, Putman works part time bagging groceries at a Publix grocery store.

It doesn't seem right to Bernadette's father, Louis Resha. "If you have a disability, you shouldn't be penalized for getting married," he said.

Independence possible

Putman was unaware of the symbolism, but he chose to propose to Bernadette on July 4: Independence Day.

Once the two are married, they will move from their parents' homes and live independently for the first time in their lives in a Nashville apartment.

Putman fondly remembers the day he asked Bernadette to marry him. It was in her parents' kitchen in the middle of a party.

"I got my knee down. I said, 'I love you a lot.' I said, 'Bernadette, will you marry me?' " Putman recalled. "Bernadette said yes. Then Bernadette started crying. Then Bernadette's dad, Louis, started crying. That was a big happy moment."

Putman and Bernadette Resha have been lifelong friends. They met at St. Bernard's preschool when Bernadette Resha was 5 and Putman was 2.

But it wasn't until 1995, when Putman accompanied the family to the Special Olympics' World Gamesin Connecticut, that they "somehow saw each other in a different way," Gwenn Resha said.

"I think their love for each other probably is more sincere than other people because their friendship just kept getting stronger and stronger," she said.

They like to go out to eat, go to the movies, walk in the mall, spend time together — many of the same things other couples like to do.

Like other couples, they are looking forward to getting married and spending their lives together. However, they aren't interested in having children.

"No kids," Bernadette Resha said. "It's real hard to care (for) children. It's a big task."

The two realize it will be hard enough to take care of each other. They are confident they can do it, though.

They know how to clean the house, wash clothes, and do minor cooking. Their parents will regularly check in on them.

"Our responsibility is, grow up. Be a young man and young lady," Putman said. "We together. It's nice together. Sometimes it's good and bad. We work it out."

to view the video go HERE

Tuesday, October 09, 2007

Talking with Your Child's Peers about Tri21- Get it Down 31 for 21: Post 9

Get It Down; 31 for 21

On a side note, Happy 8th Anniversary Big Dawg! I love you!

Last week I talked to Nash's class about October being Down syndrome Awareness Month, and I talked about "differences" (red hair, blond hair, blue eyes, brown eyes) and Down syndrome, but these guys are getting too smart. I asked questions and got "Why is it called Down syndrome"...first grade. And Nash's aide didn't even know!

So my bud Nicole had her annual talk to her daughter's class today, and had difficulty as her daughter is so, so perceptive, and got upset about some of the questions of "Why can T do _____" over and over... So Nicole, being the wise mommy, asked our friend Dave at Chewing the Fat for some pointers for her next talk about Down syndrome to our childrens' class. Here are his tips. Thank you Dave.

Getting Ready

I know you've done this talk often but I wonder how much you involve Tarenne in the preparation. Sitting down with her and going over what you're doing, asking her permission to share things, preparing her for the questions that might be asked, giving her a way to be involved -

Once There

Whenever I do a session for people with disabilities I lay out a couple of ground rules. You could do that for question time ...

Rule One: Ask question about ability.

Rule Two: Try to avoid using the word 'can't' or 'won't' in your question.

Alternately, have a bucket with pre-prepared questions, the one's you've always hoped they'd ask and have them pull them out and ask the question. (I use this all the time.)

You may well have other ideas ...

You already know from my blog, I remember you commenting, that I don't like the 'write a sentence with the wrong hand' kind of thing because it focus' on disability and feeling sorry for someone rather than identifying with the struggle. Why not ask them questions like

how many have trouble with fractions?

how many can't spell worth a darn?

how many can't draw?

Every time they put their hands up ask ... does that stop you from laughing, from running, from playing ... no, it's just having difficulty with learning. That's all Down Syndrome is, it makes it harder to learn

Monday, October 08, 2007

Busted Big Time - Get It Down 31 for 21: Post 8

Get It Down; 31 for 21

Nash dropped the "F" bomb this weekend. He said out of the blue "F'ing house". He said it about 4 times until I just couldn't ignore it anymore and I pounced on him. Jeff too. Then the next day while Jeff was at Home Depot trying to buy tiki lamp oil when all they have is Christmas stuff out in 90 degree weather...Nash said it again. "F'ing house" Instead of the time out I decided to dig further knowing he hasn't seen any F bomb movies.

Me: Nash, are you saying "F'ing house"?

Nash: Yes Mom

Me: Why are you saying that?

Nash: Seger get in the F'ing House right now....Daddy.

Busted big time, Jeff got a time out when he got home.

Thursday, October 04, 2007

Boot giveaway- Get it Down 31 for 21 : Post 4

Get It Down; 31 for 21
Click on the button for more information on th Get It Down- 31 for 21 challenge!

Go to Prince Vince's page to win!

Wednesday, October 03, 2007

World Special Olympics in China- Get it Down 31 for 21 : Post 3

Get It Down; 31 for 21
Click on the button for more information on th Get It Down- 31 for 21 challenge!

One of our local Special Olympians is in China for the World Special Olympics so I have been following it today. His name is Sam McNew and he is an awesome weight lifter. He was recognized by the House in Indiana. Go Sam! The 2007 Special Olympics World Summer Games will be held in Shanghai, People's Republic of China, from 2-11 October 2007. The event will mark the first time the World Summer Games will be held in Asia, and only the second time they will be held outside the United States

I heard a news segment on CNN news and it was all agush about the huge turn out in China for the opening ceremony; how Special Olympics is such a growing event because intellectual disabilities are so more accepted now; more opportunities etc. How China is now accepting those with intellectual disabilities so that they aren't sent off to live in institutions. I just found this article on Wall Street Journal that states

Over the past few days, Mr. Hu has been photographed spending time with China's mentally disabled population, praising people who work with them and promising more help. As recently as the 1990s, a senior Chinese leader said China had no mentally disabled. As in many countries, traditional values shamed families with disabled members. Many mentally disabled people were literally kept out of public sight, with some families not admitting to their existence.

But attitudes are changing and the Special Olympics seem to have capped a turnaround in China, at least at the top.


All I could think of was the fact that if this were so, if intellectual disabilities are so more accepted now that a World Special Olympics brings in more than 80 thousand to the opening ceremonies in a country that just started accepting those with intellectual disabilities and bringing them "out of the closet", then what in hell is happening in the US? We have had legislation on the books for more than 32 YEARS allowing children with disabilities to be educated among all students, yet we still struggle with our kids. We have had early intervention services in place for 32 YEARS and yet we can't find speech therapists or get appropriate medical assistance for our kids. And yes, the best of all, if the intellectually impaired are so more "accepted" now then why is the termination rate at 90% in the US and more detailed prenatal testing being pushed. Just doesn't make sense. Unless you consider the dichotomy we deal with every day. We have two visions. One from the medical community when there is a prenatal diagnosis and a couple of scared parents, and one from the public relations desk when those same kids are in classrooms, doing sports, and getting married.

So we need to know how to get the PR into the medical community and this is more than just the GIFTS book. It has to be huge. I know part of the assistance will be with NDSS and NDSC combining forces which I hear is coming soon.

So for now, enjoy the World Special Olympics. And Go Sam.

Tuesday, October 02, 2007

Down syndrome and D.A.D.S.- Get it Down 31 for 21 : Post 2

Get It Down; 31 for 21
Click on the button for more information on th Get It Down- 31 for 21 challenge!

Just being a DAD, that's all. Nothing more.

All you DADS, join up on this email loop with the greatest group of guys ever. Like my wonderful husband, dad to the Tater says...it ain't about coffee in Styrofoam cups, sitting around in the basement of a church on metal folding chairs. It's about being a DAD. And D.A.D.S is going international. Already has really as Australia has a chapter.

More info from DADS founder Joe Meares:

Attention ALL D.A.D.S. chapters AND DS Organizations who are planning to start a D.A.D.S. group! (And Both Nationals….we want to link you guys too!)

Dads Appreciating Down Syndrome, Indianapolis, is in the first phase of a $20,000 website project. Phase one, is the INTERNATIONAL SITE, which will provide links and information for D.A.D.S. chapters, DS groups with D.A.D.S. programs AND D.A.D.S. groups planned. (We want to include those in the planning stages so a new father, from a web search can talk to someone locally.)

The first phase of the website will be up and running by January. (The second phase is our local Indianapolis page, which is planned for later in 2008)

One thing that happens: at conferences, we provide the tools and building blocks to get a D.A.D.S. group started, and then…they do! D.A.D.S. chapters start their own list serve, get their meetings going and….until we meet at another conference…we, D.A.D.S.-Indianapolis, loose touch. (It is always a pleasant surprise to find out D.A.D.S. chapters have started)

That’s certainly a good thing, BUT….with our new interactive website, we want to get all the D.A.D.S. chapters CONNECTED!

ONCE you respond, Ted Scofield, our Indy D.A.D.S. member who is leading this project, will email you with all the features, bells, whistles and options of the web-site.

D.A.D.S. chapters, please provide:

One or two key contacts; Group name, i.e., D.A.D.S.-Miami Valley; Ds organizational affiliate; Web site info; Email; Phone numbers for D.A.D.S. contact and Ds organization; Geographical area which you cover.

Those of you (individuals and Ds organizations) who have requested material, or received material at a conference and PLAN to get a D.A.D.S. group going-----PLEASE DO THE SAME. EVEN IF your group isn’t structured yet, just having a fathers name and contact info COULD be helpful to a new father looking around on the web! JUST a dad who is willing to talk to new fathers in a specific area will be included.

Part of the D.A.D.S. Indianapolis mission is the development of new D.A.D.S. chapters. We include $10,000 in our budget each year for printing brochures, handbooks, and expenses related to helping new chapters get started and existing chapters grow. The website budget is an additional expense we decided worth spending. However, the only way our investment can pay dividends is to have all D.A.D.S. groups and Ds organizations (who value fathers---lol) CONNECTED to this vehicle!

IF you have specific questions about how this site will function, please contact Ted Scofield, ted@scofieldesign.com (Please ask Ted! My standard answer is---IT better do everything a small sedan will do for $20,000!!!)

IF you need D.A.D.S. brochures for your Buddy Walk, please contact me with mailing address. joemeares@in-motion.net (I’m qualified to put stuff in the mail!)

Thank you in advance for your quick response. PLEASE do not ASSUME (and, I can name the guys who will) we have your info. Even if we do, it’s time to update.

“To assist and support, through fellowship and ACTION, the fathers and families of individuals with Down syndrome” is OUR mission. It’s time foe ACTION. Please help make our investment worthwhile!

Joe Meares, D.A.D.S. Development Director

Monday, October 01, 2007

Inclusion, Acceptance - Get it Down 31 for 21: Post 1

Get It Down; 31 for 21
Click on the button for more information on th Get It Down- 31 for 21 challenge!


yep, even in First grade football. Gotta love it. And here are his buds blocking for him as he makes a run. Funny thing is he was fading back to pass like he did last week, but the coaches thought he was running the wrong way. hee hee
Then he belts a boy.....oops.

Get it Down -31 for 21!

Get It Down; 31 for 21
Click on the button for more information on th Get It Down- 31 for 21 challenge!

October is Down syndrome Awareness month!

This month local Buddy Walks Spread Message of Acceptance and Inclusion

Down Syndrome Awareness Month provides a forum for dispelling stereotypes, providing accurate information, and raising awareness of the potential of individuals with Down syndrome. Advancements in education, research and advocacy have had a tremendous impact on the opportunities that individuals with Down syndrome have to live healthy and fulfilling lives. Today, many people with Down syndrome:

Attend neighborhood schools and learn in typical classes alongside their peers without disabilities.

Graduate from high school and go to college.

Comprise a vibrant part of the American workforce.

Actively participate in the social and recreational aspects of their communities.

Live independently, make their own choices, and advocate for their rights.

The Down syndrome community has been celebrating Down Syndrome Awareness Month each October since 1981. The Buddy Walk was created by NDSS in 1995 to provide its affiliates and other local groups with a way to promote acceptance and inclusion of individuals with Down syndrome in their communities. The Buddy Walk also raises funds for local and national programs and services to benefit individuals with Down syndrome and their families.

In appeciation for Down syndrome Awareness month, I am joining the 31 for 21! Blogging for 31 days straight for Down syndrome awareness...join me!

I think I can, I think I can....