Mauzy's Musings

Math, it no longer makes him "sweat"

2011-12-05T09:24:00.001-06:00

This year in Fifth grade we couldn't be happier with Nash's progress, and especially his supports and success in inclusion. He has been chosen Student Council rep for his class, loves going to school, has a new "girlfriend" and yes, is even enjoying math.

We have him in regular 5th grade math for a part of the math session, where he utilizes a calculator to do the work. Then he is pulled to work on his IEP goal Math work, where he uses a number line, manipulatives and math facts to work on his basic skills.

I found a video of this past summer where Nash first learned how to carry with double digit addition, utilizing a number line. I was so impressed when his tutor showed me Nash was doing this by himself, so I will show it here. At dinner, when I asked "what was the best part of your day?" Nash now answers emphatically "Math!" We've come a long way baby, from "Math makes me sweat" in fourth grade!

Arc of Indiana's "Blueprint for Change"

2011-11-09T13:43:00.000-06:00

With the cuts in waiver funding and services nationwide, the Arc of Indiana knew something drastic had to be designed to reform the system. Some are receiving unnecessary funding, some being underserved, and there was no system in place to "swap" funding if needed without losing benefits. As a board member of the Arc of Indiana, I have been privy to the development and announcement of "The Blueprint for Change," which is a transformational plan designed to empower people to shape their own future, nurture and create natural systems of support, and strengthen the foundation of programs and services for people with intellectual and developmental disabilities and their families.

The Blueprint is driven by five key principles to guide system reform and change:

Building Career Pathways for All

Discovering and Realizing Individual Gifts

Supporting Resourcefulness of Individuals, Families and Communities

Using What You Need

Shifting the Power to What Works

A Call to Action

The transformational change called for in the Blueprint will not be easy and it will not happen through the work of The Arc alone. It will take many hands. Join us in this important movement that can make a real and meaningful difference in the lives of people with I/DD and their families. How?

Learn More! Read the Blueprint for Change Report (PDF)

Talk to each other in Forums

Share with each other in Innovation

Join the Arc of Indiana on Facebook

Follow the Arc of Indiana on Twitter

Sign up to receive E-Newsletters

Sign up to receive Action Alerts

Donate $10 Now! Text 20222, enter the message TheArc and click send.

We Are Hoosiers....a tribute and in memory of those lives lost....

2011-08-18T06:38:00.000-05:00

Steve Huffman of Indianapolis has put together a special tribute video about the Indiana State Fair tragedy and how so many Hoosiers come to the rescue. The video includes music "Look up at the Sky," by the group Train, which will donate all concert proceeds tonight to the State Fair Victims Remembrance Fund. It's titled We Are Hoosiers.....

Happy Father's Day!

2011-06-19T11:30:00.002-05:00

From 2006 when Nash was only five years old. Now he's ten. But Bigdawg is still the best Dad ever...

Make an on-line slide show at www.OneTrueMedia.com

Expectations

2011-05-15T22:42:00.001-05:00

Expectations. Goals. Life.

We recently learned that a former teacher at Nash’s school, who is now an administrator at a local elementary, that our expetations for Nash are "too high". This former teacher was a “sit in” at one of our case conferences before he left the elementary school. He wants to be a principal. He is now an assistant principal. I really thought his participation at our case conference would result that he would see Nash's abilities, not his limitations, and that this would help other children with IEP's. Guess I was wrong.

His comment, that we, as parents, have too high expectations for Nash, basically means we aren’t realistic in our goals for him academically and socially. What to say to that?

Well, before Nash was born, we knew with my age, 39 at conception, there was the probability. We CHOSE not to have invasive testing before birth as we wanted this child. And I thank God every day we didn’t have an amnio etc. Because now, we have Nash, and he rocks!

Socially,Nash has fantastic neighborhood friends, and several from school. As an example, this weekend Nash attended a birthday party, and it was amazing. Lazer tag, a great night. He passed IMAST, the Indiana Modified State Standard Testing, in Language Arts last year. Whatever…..still not a standardized testing fan. Yes, I have been tested out the wazoo being an attorney. I still don't believe in standardized testing- each day a person performs differently....I could go on and on. So I digress.

He loves his basketball. Plays on two teams- regular BB and Special Olympics. His three SO Unified Team members are from his 4th grade class, and these friendships not only benefit Nash- the kids benefit from this experience too.

Our expectations too high? Don’t know. Every child has their own agenda. “Typical” or not. Does your child’s teacher look at you at each teacher conference and say you have unrealistic goals for him/her? No, because at age (insert K through 9) no one asks you this question, because your child isn’t on an IEP and the administrators don't want to pull your child from the standardized testing to help improve school scores.

I am on the Indiana Postsecondary Education Coalition to bring a program to Indiana to allow those with Intellectual Disabilities to attend a full on campus experience. I am also working toward changing legislation to allow students with IEP’s to garner a diploma instead of a certificate of completion so they can gain worthwhile employment via the Indiana . There are many postsectondary opportunities out there for him. These are efforts that will allow Nash and others to shine - learn after high school, and obtain employment.

So I say to Mr. Administrator that never taught Nash. If you set the bar too low it will always be met, but to what consequence? If you set the bar high, it can be adjusted, individually. Nash may not meet the current graduation standards that are in place. BUT I betcha he can meet his academic IEP goals, attend class regularly, be a productive student and participate in extracurricular activities - all that will allow him to be a valuable employeel. Isn't that what we want from all high school graduates? Let's change the law.

This new Administrator should realize all kids have the ability to be whatever they can be, and should never, ever, be limited at any cost, IEP or not. Our requests for inclusion and modifications, and staying on diploma track for now at age 10, may seem ridiculous to you Mr. New Administrator, but we, as parents, are looking down the road…..and the road to our child is open.

And the Lazer Tag party his 4th grade buddy invited him to this weekend was awesome. Rock on.

Certain Proof: A Question of Worth - a feature documentary

2011-04-27T11:37:00.002-05:00

Only showing at certain film festivals now, hopefully I can find other showings and will update when I do. Inclusion, its our childrens' right. And it's what's right.

Certain Proof: A Question of Worth is a feature documentary about three children living with severe communication and physical disabilities, who struggle against society in an emotional battle to prove their worth.

What if you couldn't speak? Or use your hands? How would you prove that you’re smart? That you have an opinion? That you matter?

In Certain Proof: A Question of Worth, we follow the lives of Colin, Kay and Josh, who because of Cerebral Palsy, face those very challenges every day. Over the course of two and a half years, they work through the public school system as their mothers fight for their child’s right to be there. Colin age 10, finds “No Child Left Behind” has exceptions; Kay, 13, combats harsh stereotypes inside middle school; and Josh, 6, faces continual doubt that he can learn at all. For the mothers, convincing the public schools of their child’s potential seems to be an insurmountable obstacle. It’s a daily fight simply for the opportunity to learn. To find their voice, Colin, Kay and Josh must overcome the judgments of others more so than their own disability.

Trailer is here.....

Diagnosis to Delivery- A Pregnant Mother's Guide to Down syndrome - free download

2010-12-02T09:16:00.000-06:00

Welcome expectant parents!

Have you just had a prenatal diagnosis of Down syndrome? Well, Congratulations on your pregnancy!

Go HERE to obtain a free downloadable Down syndrome pregnancy book

As the site says: "If you have just received a confirmed or suspected diagnosis, you may be feeling very afraid, alone, and overwhelmed. We offer information that can help.

1. A free downloadable Down syndrome pregnancy book.

2. A blog on our home page. Nancy McCrea Iannone posts relevant information twice a week. The current post is always on the front page, and you can also search by categories.

We’re here to help you on this journey, prepare you for the immediate future, and give you hope. Feel free to contact Nancy privately if you wish at nancy@downsyndromepregnancy.org .

Mom's Memorial

2010-09-30T15:57:00.001-05:00

On Saturday, September 25,2010, mom peacefully passed to her Rainbow Bridge to be with Dad, her wonderful cousins Nancy and Bob Jenkins, her parents and of course, all her golden retrievers, horses, cats and misc. animals she has mothered.

She is so missed, already. Love you mom, you are without pain now, and at peace. Her online Memorial and tribute page is HERE with memorials to go to Nash's Buddy Walk team, in her honor.

2010 Down Syndrome Indiana Buddy Walk®! Join our Dash with Nash! team

2010-09-19T20:52:00.000-05:00

Hi, its Nash! I am now 9 years old and in fourth grade. I enjoy playing basketball, riding horses, football, watching movies and playing with my friends and with Seger of course! Can you join my team Dash with Nash (and Seger our 3 year old golden retriever) and help me reach my fundraising goal for our 2010 Down Syndrome Indiana Buddy Walk®?

For those not aware, Down Syndrome Indiana (DSI) is an organization that is committed to assisting and supporting individuals with Down syndrome, along with their families, and realizing the potential of all people with Down syndrome. The Buddy Walk® is designed to promote awareness and inclusion for people with Down syndrome, as well as to raise money to support national education, research and advocacy initiatives.

My Dad, Jeff, is President of DSI this year, so he wants to raise LOTS of money- well, you know how he is about raising funds! Just click on the "Sponsor Me" tab to donate. If you would like to walk with us click on "join this team" and register. All funds donated before October 16th will be counted toward our team goal of $5,000. If you donate 50.00 you get a T-shirt! If you Walk with us we will see to it you get a T-shirt too.

Hoping to see you all on October 23rd and if we don’t, thank you for your support and generosity.

Jeff, Jan, Nash and Seger Huffman

2010 Indiana State Special Olympics Equestrian Event

2010-09-19T20:31:00.001-05:00

Nash wore Mom's hunt coat she wore when she showed hunter/jumpers in the 1980's. Two fourth place ribbons for his first year, age 9.

Photo and video editing at www.OneTrueMedia.com

On my 50th Birthday ... Thank you for giving me life Mom

2010-09-02T12:41:00.000-05:00

As mom lies in bed, battling end stage cancer, she is some days able to converse, others not so much. Some days able to remember, others she lacks this ability. But she always recognizes us, loves our visits, and occaisionally will still have her wine. But one thing she cannot do this year is buy a birthday card for me for my 50th birthday September 4th.

So, I will instead thank you Mom. For giving me life, for being a wonderful and caring person to the many that love you, and will reprint your card given to me last year as I keep it on my office wall as a reminder what is important. And how much you love me, always.

How to Make a Beautiful Life
Reflections for a Daughter on Her Birthday

Love yourself.
MAKE PEACE with who you are
And where you are
At this moment in time.

Listen to your heart.
If you can’t hear what it’s saying
In this noisy world,
MAKE TIME for yourself.
Enjoy your own company.
Let your mind wander among the stars.

Try.
Take chances.
MAKE MISTAKES.
Life can be messy and confusing at times,
But it’s also full of surprises.
The next rock in your path
Might be a stepping-stone.

Be happy.
When you don’t have what you want,
Want what you have.
MAKE DO.
That’s a well-kept secret of contentment.

There aren’t any shortcuts to tomorrow.
You have to MAKE YOUR OWN WAY.
To know where you’re going
is only part of it.
You need to know where you’ve been, too.
And if you ever get lost, don’t worry.
The people who love you will find you.
Count on it.

Life isn’t days and years.
It’s what you do with time and with all the
Goodness and grace that’s inside you.
MAKE A BEAUTIFUL LIFE......The kind of life you deserve.

Happy Birthday Sweetheart! I love you!
You pick the day and your favorite dinner and I’ll
Bring it up
Have a great day!
xx’s Mom

for Dad on your 80th birthday....miss you!

2010-06-05T23:26:00.001-05:00

My Dad passed away about a week after Nash's first birthday on 2/20/02. Nash still talks about "Chuck Chuck" like he knew him... we show the scarce videos we have, and pictures. But sometimes Nash just talks like Grandpa Chuck Chuck is here.... hmmmmmmm

today Dad would be 80. I know if he would be here he and Nash would be Wendy's Frosty pals, hanging out at auctions, and just being pissy with each other, as they both loved to be!

Miss you Dad.....Happy 80th birthday!

Mom and Dad at Hawthorn Hill, our childhood home

Down Syndrome Indiana goes racin' in the 2010 Indianapolis 500 with Team Rahal Letterman #30 car!

2010-05-29T15:54:00.000-05:00

FOR IMMEDIATE RELEASE
Contact Jeff Huffman
President- Down Syndrome Indiana
317-508-6807

Down Syndrome Indiana gets Marketing Opportunity of a Lifetime

[Indianapolis, Indiana] Local nonprofit organization, Down Syndrome Indiana gets the marketing opportunity of a lifetime when Graham Rahal of Rahal Letterman Racing agreed to place its logo on his car during the Indianapolis 500 this Sunday!

Inspired by Catalina Joyce, a child with Down syndrome and the Joyce Family of Indianapolis, when Graham Rahal was asked to place the logo on his car, he agreed and according to Johanna Maher, Senior Vice President of Sales and Marketing with Rahal Letterman Racing, “ Graham Rahal likes to have an organization to stand behind and hadn’t found one yet, so when Jeff Joyce asked, we agreed”

Not only did Rahal Letterman agree to put the logo on the car, the Bobby Rahal Foundation agreed to make a donation to the organization for every lap completed by Graham and to double the donation if he finishes in the top three! In addition, Graham Rahal agreed to make a personal donation as well.

In the words of Jeff Joyce, father of Catalina Joyce with Down syndrome, “This goes to show what a stand-up guy Graham is for following up on this for us. You can’t imagine how much this can help our organization, Down Syndrome Indiana, and my Daughter Catalina. ….Graham Rahal and Rahal Letterman Racing are first class operations.”

Down Syndrome Indiana Executive Director, Lisa Tokarz-Gutierrez had this to say, “ Down Syndrome Indiana is thrilled to partner with Graham Rahal and the Rahal Letterman Racing Team to promote awareness and acceptance of individuals with Down syndrome at this year’s Indy 500! We wish Graham the best of luck. It is a huge victory for individuals with Down syndrome to have our logo displayed on Graham’s car. It will go unbelievably far in enhancing the lives of individuals with Down syndrome, not only in Indiana but across the United States as well. This is truly a dream come true for our families to have their children embraced by the racing community. We are incredibly fortunate for this amazing opportunity and completely impressed over and over with the generosity of Graham Rahal. “

Good luck Graham!!!

Indiana Postsecondary Education Coalition visit to NJ

2010-05-21T22:13:00.001-05:00

Doors to colleges are opening for people with intellectual and other developmental disabilities in many different ways all over the country. Our Indiana Postsecondary Education Coalition is striving to provide a program in Indiana and was invited to view the programs in place in New Jersey thanks to NDSS and the Riggio family for the funding for our visit.

Photo and video editing at www.OneTrueMedia.com

Happy Mother's Day!

2010-05-09T18:47:00.000-05:00

What a wonderful Mother's Day weekend! Went to dinner with Mom, sister Amy, brother in law John, my honey and my Nash. Then today tennis lessons with Nash and his buddy Cade, who also sports an extra, and is in his third grade class.

and found this wonderful video of Nash at age 3 wishing me Happy Mother's Day in Sign. I remember crying so hard. Sniff sniff.

Hope everyone had a wonderful Mother's Day!

3/22/10 WRE March Madness!

2010-03-22T23:02:00.001-05:00

Nash's Elementary School put on a wonderful "March Madness" basketball game, where Team 1 (K, 1st, 2nd, Special Needs teachers) played Team 2 (3rd, 4th, Specials and Title 1 teachers) The kids could hit free throws for one dollar, and Nash hit three of his! whoot! Then Nash's 3rd grade teacher , Mr. P, Rocked the River by hitting a three pointer at the buzzer! Very fun evening.

Make video montages at www.OneTrueMedia.com

Happy World Down syndrome Day!

2010-03-21T09:26:00.002-05:00

March 21st is World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. Commemoration of World Down Syndrome Day started on 21 March 2006, it has "grown" manifold globally. The annual observance of WDSD aims to promote awareness and understanding of Down syndrome and related issues : and to mobilise support and recognition of the dignity, rights and well being of persons with Down syndrome.

Below is a montage Rebecca created for this special day. Enjoy!

Photo and video editing at www.OneTrueMedia.com

Parker could use your prayers

2010-03-18T14:15:00.000-05:00

Many of our bloggy friends are also friends with Parker. He needs some prayers, big prayers, more than ever, right now. Tammy just had major surgery, and as his primary caregiver, is devastated she can't be at the hospital right now with Parker.

His update from Tammy from the last POST is here:

Reed called. The first diagnosis of a bacterial infection was incorrect, while his white count is up, nothing cultured out overnight. Tested for RSV.....and it came back POSITIVE. RSV, trashed lungs, and Pulmonary Hypertension do not a great scenerio make. Parker is stabilized enough that instead of a helicopter rid...e, they will be just transporting him up to PCMC by ambulance. They'll be leaving in about an hour.

Come on Parky.....

Divorce Rates Lower Among Parents Of Children With Down Syndrome

2010-01-23T19:21:00.001-06:00

The "Down syndrome Advantage" gotta love it.
_________________________________________________________________
Divorce Rates Lower Among Parents Of Children With Down Syndrome

Vanderbilt Kennedy Center (VKC) researchers are reporting slightlylower divorce rates for families raising a child with Down syndrome than in the comparison groups, following an examination of the Tennessee Department of Health?s birth, hospital discharge, and divorce database records from 1990-2002.

The population-based study published in the American Journalon Mental Retardation by VKC investigators Richard Urbano, Ph.D., andRobert Hodapp, Ph.D., showed divorce rates were lower (7.6 percent) for families of children with Down syndrome as compared to 10.8 percent inthe population-group with non-disabled children and 11.25 percent forfamilies of children with other congenital birth defects.

Lower divorce rates in the Down syndrome group may be due in part to what the researchers call the "Down syndrome advantage," which refers to the personality and behavior of most children with the syndrome and the fact that parents of children with Down syndrome are often older, moreeducated, and married before having children.

"When divorce did occur in the Down syndrome group, however, ahigher proportion occurred within the first two years after the child's birth," said Urbano, who serves as VKC's director of Evaluation andcoordinator of Research Databases.

"Mothers and fathers of children with Down syndrome were morelikely to divorce if they were younger, had not graduated from high school, and if fathers were less educated and lived in a rural area."

* Researchers compared 647 families who have children with Down syndrome,

* 10,283 families with children with other developmental disabilities, and

* 361,154 families with children who did not have any disabilities.

Urbano said the findings would be helpful in counseling parentsof newborns with Down syndrome about the risks for marital discordduring the first few years after a child's birth, and also indeveloping special programs for families in rural areas.

The Back Pack Search

2010-01-12T22:04:00.002-06:00

The Back Pack Search...............we all do it.

Whether you are a working parent away from the home, or from the home, the routine is the same, but the hour may differ. After school, you approach your beloved child, arms ready for that warm embrace, and as you offer that “I love you” hug and kiss, you ask “How was your day?”

Yet, this is when all “normality” ends, as the means to respond differs, the spectrum is vast, as all children are dissimilar in their response.

At age 8.5, Nash’s details vary; “I had a good day! No Strikes! " I may get "I played kickball and for lunch ate chicken poppers.”

But, for most kids without a disability, what would a “typical” (eh, what is that anyway) response be to a parent’s question of “[h]ow was your day?” Maybe it would include some of the stressors of third graders I found online … a discussion of the nuances of multiplication, a discourse about fashion trends, pop culture.

But whatever the response, it would be. Verbal. With many, many words…and description....or maybe a few words with an abundance of attitude.

For children with a disability, and in our case, Down syndrome, the response is never “typical”.......It will be short in description, and one you may or may not actually believe is actually “true”, and after the awesome verbal/signing/PEC or whatever method of response is given to our question of “How was your day” if it contained gym/PE class it kind of goes like this…..

”I did kickball”

but nothing like

“I really enjoyed PE today because we played kickball and I was the pitcher and Mrs. Smith said I did a great job and Zach ran the bases and got a home run”.

BUT

after I get “I did kickball” from Nash, I search in the Back Pack and find……………his communication notebook that has a short note that he had a good day, no strikes, and best of all.. a “Gym Rat” pin ...and then I know he had a very, very awesome PE day as Mrs. Smith gives a Gym Rat pin to those that have shown that they were a “Star” in PE that day…..

thank you Mrs. Smith.

and thank you to Nash’s teachers and para because it is so important that you bring the communication from the classroom to our home!

Remembering Annette.....

2009-12-16T14:14:00.003-06:00

two years since you have passed...and we miss you very much.
More on Annette, our friend, mom, sister, aunt, and wife........
HERE

Student with Down syndrome inducted into National Honor Society

2009-11-14T21:44:00.002-06:00

Well Done Sarah, Well Done.
______________________________________

Rising to the occasion again: Student with Down syndrome inducted into National Honor Society at Blue Valley North
By GRACE HOBSON
The Kansas City Star

Sarah Sherman is no more special than any of the 141 other students inducted Thursday night into Blue Valley North High School’s chapter of the National Honor Society.

Her 3.75 grade-point average is high, yes, but they all have at least the required 3.5. Every one of the students worked hard to pull the grades while participating in school activities and logging at least 40 hours of community service.

She is, however, the only one who has Down syndrome.

As she was called to walk across the Blue Valley North stage at Thursday night’s ceremony, her achievement was not singled out. Her name carried no extra weight on the program. She blended in.

She belonged.

“That’s the part of it that’s the greatest achievement,” said Nancy Pence, the faculty co-sponsor of the National Honor Society. “That she’s a part of this group.”

The society’s national headquarters doesn’t keep statistics on how many students with Down syndrome have been inducted into the elite honor society. But Sarah’s achievement is unusual enough that she is the first in Pence’s seven years as a sponsor, and the only inductee with Down syndrome that Carter Burns has known in more than 30 years of being a principal.

Unusual but not surprising to Sarah’s teachers. Or her parents.

They’ve watched their little girl surpass expectations all her life. She’s so social, she runs into friends wherever she goes. So good at memorizing facts, she’s a “Jeopardy” whiz. She’s been in three school musicals. She taught herself sign language.

“People would look at us like, ‘She can’t be doing that,’ ” said her mother, Pam Sherman. “She can. She did.”

Sarah never considers what she can’t do. She just knows what she can do.

“I learned from experience hard work does pay off,” Sarah said. “I feel if I persevere, the work will get done, and hard work does pay off.”

The 17-year-old junior has had to work hard for everything she has accomplished, starting as a baby with the basics, like sitting up. Her mother spent hours on occupational, physical and speech therapies to help her reach developmental milestones.

Early on, her parents learned they were lucky. Sarah didn’t have many of the health problems that thwart progress for many children with Down syndrome, a series of birth defects caused by an extra chromosome. Babies with Down syndrome are born with cognitive impairment, low muscle tone and other health problems.

Jim Sherman remembers when they had to feed baby Sarah hourly because two holes in her heart left her too weak to drink much from a bottle. One night when he got up to take his turn, he peeked into her bassinet and found her babbling and playing with her feet in her face.

“I thought, ‘This is all right,’ ” Jim said. Two weeks later, the cardiologist said the holes had healed themselves.

“From that point on, it’s been good,” Jim said.

Sarah proved to be a bright and eager learner. She knew her alphabet at 3; when she was in kindergarten, a teacher didn’t buy that Sarah could know her letters.

She struggled to learn to read, but when she was 7 or 8, her parents noticed a new fluency. They discovered why: Sarah had learned to turn on subtitles on her favorite musicals, including “The Sound of Music,” and used them to help her read.

For years Jim has made index cards to teach his daughter, a visual learner. In grade school, Sarah would put the cards in a circle and sit in the middle, making up sentences with the words from the cards, Pam said.

“Hard work does pay off,” said Sarah Sherman, who was inducted into the National Honor Society on Thursday night. After the ceremony, the Blue Valley North junior thanked her aunt Deb McAnulty for attending.

“We have thousands of index cards,” Pam said. “We have boxes and boxes.”

In addition to history and anatomy, Sarah takes general education reading and acting. She works with special education teachers for math, has a peer tutor during a study skills class and is a peer tutor for a senior with Down syndrome.

A paraprofessional or teacher accompanies her to anatomy and history to help take notes because Sarah’s fingers can’t always keep up. She takes her tests apart from other students to give her more time because she processes information more slowly. On multiple-choice tests, the answers are pared because her brain has a hard time sorting; she’s better at simply supplying the answer.

She aces her coursework.

“We really push the envelope on Sarah, and she always rises to the occasion,” said Dana Steinwart, one of Sarah’s special education teachers.

Sarah works hard to make it happen. She does some homework after school, but weekends, when she’s fresher, are devoted to studying. During breaks, she hangs out on Facebook or finds other diversions.

“She likes to sing and dance, so we hear a lot of that when she’s supposed to be studying,” Pam said with a laugh.

Sarah set a goal of being inducted into the National Honor Society, just as her big sister was. She had the grades. She volunteered with Meals on Wheels, at her grandparents’ church and at a nursing home doing sign language with a resident who is hearing-impaired, and she kept track of her hours until she hit the magic 40. She got the requisite teacher recommendations.

“I didn’t even know if I was going to get in,” Sarah said. “I’m really excited about that.”

But her parents say it never occurred to her she wouldn’t make it. Why wouldn’t she?

“She doesn’t doubt for one minute that she can do what she tells you she wants to do,” Pam said. “There isn’t anything in her head that says, “Ooooo, don’t try that. You might fail.’ She doesn’t doubt for one second.”

After accepting her honor society sash Thursday night, Sarah got an onstage hug from chapter co-president Drew Gaddie, her good friend.

“I try hard not to cry when those things happen,” Sarah’s mother said after the ceremony.

“I had to try not to cry, too,” Sarah said.

Upon spotting fellow inductee Elizabeth Campbell, Sarah bounded over with an embrace. “Congratulations!” said Elizabeth, a junior.

“We did it!” Sarah responded.

Sarah wants to be a nurse, and her parents think she can probably work in the medical field, maybe as a sign language interpreter.

They don’t know whether Sarah will want to go away to college or perhaps start with some online college courses.

Just as they did with Sarah’s sister, Jenny, they will support her as she chases her future.

“We want her to pursue her dreams, just like we want Jenny to,” Pam said. “We want her to be healthy and happy.

“The rest is easy after that.”
To reach Grace Hobson, call 816-234-7715 or send e-mail to ghobson@kcstar.com.

Beautiful October day in Indiana

2009-10-20T07:11:00.002-05:00

and we took advantage of it! Seger turns 3 this week, and Nash is 8 1/2 now.

2009-10-14T22:43:00.003-05:00

Tomorrow is Teacher conference day for our boy, now 8 years old and in third grade. My blog has taken a back stage to daily/weekly/monthly events; my work at the Attorney General’s office as a criminal appeals attorney for you, the citizens of Indiana, my new appointment with the ARC of Indiana board of directors, working with Down Syndrome Indiana and ARC of Indiana to initiate post-secondary educational opportunities in Indiana, being Mom to Nash and trying so, so hard not to be “educator of Nash”, getting our powerful husband/dad BigDawg back on his feet after retinal detachment surgery took him OUT for two weeks…and still continuing.....ugh, he is so vital to our family!

And now that our 2009 DSI Buddy Walk is over, so many positive raising over 110K, but knowing I will be involved in big changes soon, locally and nationally. I am just mind boggled at the split in the national spectrum in the DS movement right now with the major fundraiser (NDSS Buddy Walk) that has allowed ALL of our affiliates to progress to the point they are today. ALL of them. But I digress….

Tomorrow will be a “show me” day, a day for Nash to shine (we tend to leave the negatives for the communication notes, but even those have promise!) and I have no doubt he will do so. We have a fantastic team this year, wonderful accommodations.

Looking forward to tomorrow, unlike the days when I couldn't see beyond the tears.

So you wanna Dash with Nash? 2009 DSI Buddy Walk® -Indy- October 10th!

2009-08-20T11:30:00.010-05:00

The 2009 DSI Buddy Walk is Saturday, October 10th, 2009 Celebration Plaza, White River State Park - Downtown Indianapolis

Join Team Dash with Nash!

We are taking part in the Buddy Walk®, as an affliate of the National Down Syndrome Society, to raise money for Down Syndrome Indiana, an organization near and dear to our hearts. The Buddy Walk® has three primary goals:
* To promote acceptance and inclusion of people with Down syndrome* To raise funds locally and nationally for education, research and advocacy programs, and;
* To enhance the position of the Down syndrome community, enabling us to positively influence local and national policy and practice.

Please join our team and/or make a donation by visiting DASH WITH NASH

You can donate online with a credit card or shoot me an email and send a check via snail mail, but it needs to be in by October 3rd to go to our team total.
For more information about the Buddy Walk click here

Thank you!

As I await for word on my son's first day back to school...third grade in his local elementary school

2009-08-11T13:16:00.003-05:00

I reflect on Eunice Kennedy Shriver's words:

"The right to play on any playing field? You have earned it. The right to study in any school? You have earned it. The right to hold a job? You have earned it. The right to be anyone's neighbor? You have earned it." Eunice Kennedy Shriver 1987 Special Olympic World Games - South Bend Indiana.

By Jack McCallum
Originally published in Sports Illustrated Magazine, December 8, 2008

On a steamy July 20th afternoon in 1968, Eunice Kennedy Shriver strode to the microphone at Soldier Field in Chicago and convened the first Special Olympics Games. It was only seven weeks after her younger brother, Robert, had been gunned down in the kitchen of the Ambassador Hotel in Los Angeles, and about five weeks before the Windy City exploded in violent confrontations between police and protestors at the Democratic National Convention.

The assassination and the violence had lasting political effects on the American landscape...and, in a much different way, so did the Games at Soldier Field.

With a crowd of fewer than 100 people dotting the 85,000-seat stadium, about 1,000 athletes from 26 states and Canada, all of them routinely classified in those days as mentally retarded, marched in the opening ceremonies and followed Shriver as she recited what is still the Special Olympics oath:

Let me win,
but if I cannot win
let me be brave
in the attempt.

Chicago Mayor Richard Daley, who would become a polarizing figure at the convention that August, attended the four-day event and told Shriver, "You know, Eunice, the world will never be the same after this."

While skeptics shook their heads and most of the press ignored the unprecedented competition, Shriver boldly predicted that one million of the world's intellectually challenged would someday compete athletically.

She was wrong. Today, more than three million Special Olympic athletes are training year-round in all 50 states and 181 countries. They run races, toss softballs, lift weights, ski moguls, volley tennis balls and pirouette on skates. There are World Winter Games, the most recent in Boise, Idaho, in February, and World Summer Games, which will be staged next in Athens in 2011. Documentaries, Wide-World-of-Sports presentations, after-school TV specials, feature films, cross-aisle Congressional teamwork and relentlessly positive global word of mouth have educated the planet about Special Olympics and the capabilities of the sort of individuals who were once locked away in institutions. Schooling, medical treatment and athletic training have all changed for people with intellectual disabilities as a result of Shriver's vision; more important, so have minds, attitudes and laws.

While Nash is still competing with his classmates in sports, he will have the opportunity to enter Special Olympics sports. Opportunity. What an amazing word.

Thank you Mrs. Shriver for helping pave the way for our children and adults with disabilities. Rest in Peace.

As the Summer Ends....

2009-07-27T20:53:00.012-05:00

really. Is it almost August? And to think school starts here August 11th? And we will have a third grader?

The past few months have been tutoring for Nash, (reading awesome, math pwtttthh) swimming for Nash, movies and just being eight for Nash, Mom working on some awesome criminal appeals cases and winning for the State (in Zack and Cody style, Yeah Me!) Jeff working on his aquisitions for his company and legislative issues he loves to do (Yeah Him!) Seger getting more hotspots and me hating them, and switching foods from one $52.00 bag to another (Boo)

We are also of course active with DSI, ARC of Indiana, and working on getting postsecondary education programs solidified in Indiana.

So now realizing that this summer is almost hitting August, someone stop all of my communication devices because I want to deplane... please control my Blackberry, facebooking, blog reading (Yep I noticed my personal blogging is nada since I found facebook), twittering (joined but refuse to particiate) and yahoo groups for DSI.

I wanted things to stand still for one minute, one hour, one day, to allow me to enjoy life for a bit. whew. Vacation on Captiva Island for a while allowed that for me/us....loved it. And so enjoyed that Nicole and family joined us...

and now for a recap in photos of the last two months. ahhhhhhhhhhhh
Nash and Mackenzie at the DSI flyin that brought in 11K for DSI. Awesome!

Nash went to Camp Agape and so loves riding...that is our newest sport

Nash and Seger brought in July 4th with a bang! and no fireworks were involved...loved the NYC fireworks on TV for this family

The Johnson family had another birth on their farm and shared it with us

Captiva Island Beach photos.......our home away from home now.

Happy 4th of July!

2009-07-04T10:16:00.001-05:00

Happy 4th of July! Bubba says....
Originally uploaded by Nashtaters

Have a safe and enjoyable Independence Day!

Supremes issue their decision in Forest Grove School District v. T.A.

2009-06-22T15:35:00.003-05:00

I blogged about this case going before the Supreme Court HERE. The decision was released today, and yes, the school is responsible for reimbursment!

Pete Wright writes: Despite a long history of ADHD, severe depression, substance abuse problems, and failing grades, Forest Grove School District determined that T. A. was not eligible for special education services under IDEA, nor for protections under Section 504.

As T.A.'s behavior and education continued to spiral out of control, the school offered no help. Finally, his parents placed him in a private school for children with behavioral and emotional problems.

In their 6-3 decision, the Supreme Court held that:

". . . IDEA authorizes [tuition] reimbursement for the cost of private special education services when a school district fails to provide a FAPE and the private-school placement is appropriate, regardless of whether the child previously received special education or related services through the public school." (page 16 of the decision)

Full opinion here.

Woofstock 2009

2009-06-13T23:16:00.001-05:00

woofstocknashseger
Originally uploaded by Nashtaters

We had a wonderful time today at Hamilton County Indiana's Woofstock benefiting the Hamilton County Humane Society! Nash and Seger loved it! As did we! See if you have a Woofstock near you so you can help unwanted/abandoned/fostered dogs and animals.

Happy Mother's Day!

2009-05-10T11:38:00.003-05:00

I received the BEST mother's day present today! I was getting ready upstairs as we are heading to the track to see qualifications at the Indy 500, and it was just too quiet downstairs (you moms know what I mean).

I went downstairs and Nash is all dressed with clothes he picked out. The shirt matched the shorts, was on correctly, underwear on correctly, shoes on the right feet and......drum roll..........he had BUTTONED the top button of his jean shorts. OMG. Never has he been able to button.

One proud momma who loves her son so much

Happy Mother's day to my momma too! and all you fab moms out there!

Supreme Court Weighs Funding For Special Education

2009-04-28T12:56:00.002-05:00

As noted in the Indiana Law blog today: Courts - "Court Weighs Funding For Special Education"

Robert Barnes and Daniel de Vise of the Washington Post reported in this story yesterday that begins:

The Supreme Court will consider a question this week that that has riled parents, cost local school boards here and around the country hundreds of millions of dollars, and vexed the justices themselves: When must public school officials pay for private schooling for children with special needs?

The issue has emerged as one of the fastest-growing components of local education budgets, threatening to "seriously deplete public education funds," which would then detract from the care of students with disabilities who remain in the system, according to a brief filed by the nation's urban school districts.

It has also become one of the most emotional and litigious disagreements between frazzled parents and financially strapped school officials, with the battles often ending in court. District of Columbia schools allocated $7.5 million of this year's $783 million budget just for such legal costs.

Congress and the court have already made it clear that every child with disabilities has a right to a "free appropriate public education." If the school system can't provide one for a child with a disability, it must reimburse parents for private school costs.

But the question for the court now is whether schools must be given a first chance to provide those services before placing the child in a private school. Some parents say that could force students, especially poor ones, to spend time in an undesirable situation before getting the help they really need.

The argument is today, the case is Forest Grove School District v. T. A. (08-305).

Here are the documents, via the SCOTUSBlog Wiki and Indiana Law Blog. I will have more to add later...............

Anyone have information on grants for programs for the summer?

2009-04-22T22:19:00.002-05:00

Would love any input on financial assistance/grants for educational programs/summer tutoring for kids with special needs.

And no, this would be outside of any state assisted "medicaid waiver" program. That we are STILL on the waiting list in Indiana in which to participate...going on 8 years.

Back to researching.............

Down syndrome and adoption

2009-04-21T10:48:00.003-05:00

I sometimes get hits on my blog from those that google Down syndrome and adoption, and wanted to get this information out there for those that may wonder where they can find babies with Down syndrome to adopt. Or maybe wonder who to contact to place their baby, who has been prenatally diagnosed, with a loving family in order to give their child the gift of life.

Robin Steele from the Adoption Awareness Program in Down Syndrome Association of Cincinnati stated they currently have birth families currently trying to make an adoption plan for their babies that are soon to be born, or have recently been born. Click on their link to view a wonderful video.

The National Adoption Awareness Program also provides a link for public and private agencies that have custody of infants or children with Down syndrome and are seeking adoptive families to provide loving homes for children with Down syndrome of all ages. The DSAGC can provide the following resources to birth families who may be considering releasing a baby for adoption:

• Information on Down syndrome

• Information on making an adoption plan

• Direct contact with birth parents that have made an adoption plan for a child with DS in the past

• Toll free number - 888-796-5504

• There are no fees for any of the services provided by the National Adoption Awareness Program.

Are you interested in adopting a baby boy or girl with Down syndrome? Do you have friends who might be interested? Are you interested in placing a prenatally diagnosed child for adoption in order to make another family's dream come true?

To contact Robin please call: 888-796-5504 or 513-761-5400 or email her at rsteele@zoomtown.com

A Lesson to Be Learned...from Susan Boyle

2009-04-14T20:52:00.004-05:00

For all that pre-judge, and yes, we all either use to do this or still do, Susan Boyle teaches us to just wait to unearth the treasures from within.

47 Year old Susan Boyle wows the judges with her performance in the auditions for Britains Got Talent, singing I dreamed a dream from Les Miserables. CLICK HERE to watch

quote:

"Susan is a reminder that it's time we all looked a little deeper. She has lived an obscure but important life. She has been a companionable and caring daughter. It's people like her who are the unseen glue in society; the ones who day in and day out put themselves last. They make this country civilised and they deserve acknowledgement and respect.

Susan has been forgiven her looks and been given respect because of her talent. She should always have received it because of the calibre of her character."

Captiva Island, we miss ye!

2009-04-14T06:57:00.018-05:00

Nash's spring break brought us to paradise last week; South Seas Island Resort, beach house number 29, in Captiva Island Florida. We flew into Ft. Myers and spend a full week in a wonderful four bedroom, four bath beach home just 15 feet from a private pool, and about 200 yards from the Gulf of Mexico beach.

Our biggest decisions were: Pool or Beach? Margarita or John Daly? Flip flops or beach shoes?

We had not experienced such a relaxing vacation with Nash ever, and I would highly recommend it over a Disney/Orlando trip or any other with children! Nash enjoyed playing in the pool with the few other kids on our private end, and we did go to the resort pool that hosts a couple of water slides, but was packed with children! wowza. We soon retreated back to our quiet domain.

We highly recommend Jensen's marina for renting boats to check out dolphins and manateesto cruise the islands as they have a wonderful operation and are most friendly. Restaurants we went to include the Bubble Room of course (ok food, wonderful desserts!) but highly over-rated and really not worth the wait. We went lunch the first day there and visited with Lori, one of my college buds, so it was fun. We went to a local Mexican restaurant once, and highly recommend the Mucky Duck for cocktails on the beach but go about 3pm after the lunch crowd and before dinner hits. We cooked out on the grill and ate steaks, brats and made sandwiches so didn't eat out all the time. The island is wonderful, but mealtimes can create chaos with the crowds.

Weather was wonderful for the most part; mid 70's but wow it was windy! Locals said it had been like that for three weeks; high tides and choppy Gulf waters. But the sunsets....aahhhhhhhhh

We returned to cool temps on Easter Sunday and Nash was able to make the Easter Egg hunt in the neighborhood.

The best spring break ever! Now my efforts will be to try and get BigDawg in a better mood; he hated Indiana weather before and now, well lets just say it ain't purty.

It was a peaceful time for the three of us.

Thank you Steve and Julia for allowing us to enjoy your special, and most wonderful beach home!!

Spread the Word to End the Word March 31st

2009-03-31T10:16:00.002-05:00

On March 31, join youth and actor John C. McGinley in a day of awareness for America to stop and think about their use of the R-word.

Our language frames how we think about others.
Help eliminate the use of the R-word in everyday speech.

Stop yourself, your children, and others from using the word "Retard" and "I am so retarded". It's demeaning to my child and all others with an intellectual disability.

thank you!

End the "R" Word

2009-03-27T08:04:00.001-05:00

New rule: Let's make this word unacceptable
By Maria King Carroll
March 27, 2009

I have despised the word "retard" for more than 40 years, which is as long as I've had a brother with intellectual disabilities. So when I heard about the Special Olympics' Spread the Word to End the Word campaign, my first thought was: finally. I am tired of cringing when otherwise nice people thoughtlessly use the word, tired of feeling outraged when it is employed with the cruelty of hate speech.

The R-word deserves extinction. Let's make it unacceptable.

Retard connotes defective, stupid, an absence of good qualities. It's a reduction. It's as if someone took your most noticeable weakness and reduced your entire identity to a mean term that describes this weakness. At R-word.org, you can view stories and videos about some of the amazing people who've had this awful term applied to them.

Targeting words for elimination isn't a small thing, but this one adds no knowledge or understanding of whom it describes. It does, however, tell us something about the user, and it isn't complimentary. The R-word hurts people with intellectual disabilities when it is spat at them or even used in a joking manner.

Banishing this particular word is only one step in the process of humanizing the world for people with disabilities. Many people were offended by President Barack Obama's unfortunate remark about his bowling game being suitable for the Special Olympics. That someone who is as smart, thoughtful and compassionate as the president could make a comment like this illustrates the work we need to do. Because for many, making fun of people with intellectual disabilities is something they don't think about; it's still OK.

People with intellectual disabilities don't react with hostility when they are dissed. As actor John McGinley of "Scrubs," who has a son with Down syndrome, said, "When you pick on that group, you've picked the perfect storm of cowardice to exercise your vitriol, because they're not going to return serve." They're equipped to hug not hit, said McGinley. Proving McGinley's point, 38-year-old Special Olympian Tim Maloney, a bowler with a 165 average, offered bowling tips to the president after Obama's appearance on "The Tonight Show with Jay Leno."

Many of us who are passionate about Spread the Word to End the Word come at this from personal experience. My brother Joseph was born in 1966. His disability wasn't obvious at birth. But he was the fourth child of my parents, and they noticed that he was hitting his developmental milestones—walking, talking—much later than his older siblings. My parents told us that Joe was slow, which was all they knew at the time. In the mid-1960s, the knowledge about and resources for those who were intellectually challenged were scarce.

As time went on, we learned how slow; today my brother lives in a supervised group home where he needs help with personal hygiene and can't drive a car. He also has a job, is a passionate fan of the Dallas Cowboys, comes home most weekends, and has one of the most finely calibrated moral compasses I've ever seen.

Growing up, we lived in a close-knit neighborhood. My parents were friendly with all the other parents in the neighborhood. Perhaps because of this closeness, I don't remember Joe being teased or called names by the neighborhood children. When you know a person with intellectual disabilities, you are less likely to call them, or others like them, names.

And this is the ultimate goal of the Spread the Word to End the Word campaign, which launches on March 31: people at all levels of intellectual functioning becoming friends, or at least part of each other's worlds. This impulse is one of the forces behind mainstreaming in education (it's good not only for the intellectually challenged kids), the Special Olympics, which needs lots of volunteers, and L'Arche, a Catholic movement of residential care.

Our world is much richer when all of us get to contribute our gifts. But it's hard to see people's value when names like retard are acceptable. Let's end the word today.

Maria King Carroll lives in West Peoria, Ill.

Happy World Down syndrome Day!

2009-03-21T10:32:00.004-05:00

World Down Syndrome Day 2009 is celebrated on 21st March. The date was chosen to signify the relevance of Trisomy 21. (3/21).

On March 21st, 2009, World Down Syndrome Day will also mark the 50th anniversary of the publication of Professor Jerome Lejeune's discovery of the extra copy of chromosome 21 which causes Down Syndrome.

Now known as trisomy-21 because of the third copy of the 21st chromosome, Down Syndrome was first described by the English doctor, John Langdon Down, in 1866 but until Professor Lejeune's publication in 1959, the ultimate cause of Down Syndrome was unknown.

Professor Lejeune and Dr Langdon Down are regarded as the preeminent contributors to our present understanding of Down Syndrome, not only because of their research into Down Syndrome, but also because each of them contributed much of their own time and money to advocating on behalf of persons with Down Syndrome and their families.

Down Syndrome organisations around the world this year will pay tribute to the pioneering work of Professor Lejeune and celebrate the tremendous advances in the care and social welfare of people with Down Syndrome over the past fifty years.

"Professor Lejeune provided inspiration to parents and professionals who met him, and drew strength and hope from his optimism and his simple and profound dedication to humanity. The Lejeune Institute inParis continues to sponsor research in this area” said Mrs. Penny Robertson, President of Down Syndrome International. “But while there is much to be proud of in western countries in the services provided for people and families with Down syndrome, there is still an enormous amount of work to be done in many countries".

So celebrate with us today, and learn more about Down syndrome, click here.

President Obama, you have broken my heart

2009-03-20T09:42:00.003-05:00

I was a supporter of Presidential candidate Obama for the reason he campaigned that he would fully fund IDEA so that our children can receive all the supports and services needed in order to be fully included in public schools. He lost that support last night when he appeared on the Tonight Show with Jay Leno. “President Obama attempted a “joke” about his bowling abilities, and told Leno that his bowling score, with practice, had risen to 129. “That’s very good, Mr. President,” Leno deadpanned. It’s “like the Special Olympics or something,” the president replied. During the campaign season, then-candidate Obama described his bowling skills as “terrible” after scoring 37 when he hit the lanes on the campaign trail in Altoona, Pennsylvania. A perfect score is 300. “

Sure, a White House spokesman said the remark was not intended to disparage Special Olympics athletes, who have intellectual disabilities. “The president “thinks the Special Olympics is a wonderful program that gives an opportunity for people with disabilities from around the world,” said White House deputy press secretary Bill Burton.”

I understand Timothy Shriver has accepted the President’s apology, but for me his remark cannot be “apologized away”. It came from President Obama’s beliefs; that those with intellectual disabilities are “beneath” others in society. It's almost as bad as him using the R-word. You can’t just make an off-hand comment like that if you truly believe in the abilities of those with disabilities. I know I would never make a comment like that, as I know better.

Maybe he meant it only in the context of their athletic ability? Perhaps, but it is still deep rooted belief of his that cannot be explained or apologized away, and no amount of “face” he will no doubt now have at Special Olympics events will change this belief. A belief that will continue to spread through the country, and the world, now that our President espouses it.

I voted for Mr. Obama because he promised change, and provided the promise of Hope to our country. I thought he “got it”.

Instead Mr. President, you have broken my heart. But worse, you have broken my son’s Hope.

Nash's Natter

2009-03-11T13:30:00.003-05:00

Last night BigDawg had a DADS meeting, so I had single parent duty. I let Seger out and of course he is in full SPRING mode and runs around the neighborhood since it was 72 degrees. Nash was upstairs in my bedroom watching a movie while I changed clothes after work, and I saw Seger take off after a neighborhood walker….so I told Nash I was going to go get Seger and would be right back, to stay in my bedroom.

I get home after chasing Seger around (he had to see every dog, even the 200 lb great dane that is being rescued by a neighbor and isn't too friendly) so it took me about 15 minutes to get back home. I get home and Nash is on the phone, I hear, "ok, yeah, I will tell her, bye." I ask who was on the phone and he says "Daddy".

I look at my cell phone and I have EIGHT missed calls! All from Big Dawg.

I call him back and was told Nash told him:

Mommy isn't here
She went to find Seger in the neighborhood
Seger chased Charlie's dogs
Seger got hit by a car, he's in big trouble
Mommy is mad
You better come home.

I think he met his "3-4 word speech utterance" goal. ahem.

When he wants daddy home, he knows how to do it.

Its always something.....Nash's Natter

2009-03-02T10:36:00.002-06:00

I am finding that Nash is really tired of mom. Not all the time, but most of the time. Like when I chaparoned his class to the Children's Museum last week; I had four in my group including my independent boy. He wanted to be as far away from me as possible, practically walked 15 paces behind me at all times. He of course was thrilled to do this with the rest of the pack tagging along at the same pace, but I could not be too close, uh uh. Not allowed.

Then there is the weekend review of homework; touchmath and reading mostly. We reviewed his spelling words which he already could read (doing contractions now)and could tell me that "don't" is both don't and do not. Then we did a sheet of touch math where he is doing "doubles" by himself now, and doing a whole sheet of problems without me interfering, which is good for his independent little self. I asked him to go read four books, then come back to finish the touch math. He read the books, but would not return to the table. (he has a reading area with baskets of books). I finally bribed him got him to come back to the table, and when I placed a few more touch math worksheets in front of him, he stood up, looked at me, and said I HAVE HAD IT UP TO HERE, complete with hand motion over the top of his head.

uh, okay. Our communication was quite clear on that one.

Boys, each having Down syndrome, score 3 pointers!

2009-02-22T19:56:00.003-06:00

Nash watched his video below, scoring in his last Upward Bound basketball game this weekend, and then yelled THREE POINTS! While Upward Bound 2nd graders don't keep score, this shot would indeed have been a three, or as coach said, maybe FOUR points!

Photo and video editing at www.OneTrueMedia.com

I reminded Nash of the recent video on national news where Patrick Thibideau dropped two three pointers in a game. Nash said "yep, just like me!"

Maybe there should be accommodations put in place so kids with IEP's can play varsity sports. Hmmmmmmmmmmmmmmmm

Upward Bound season is over....

2009-02-21T15:39:00.003-06:00

a few of his baskets on this video. The last one is a three pointer he got today- nothing but NET BABY! Then he did his jig. The crowed went wild. It was so fun!

Make video montages at www.OneTrueMedia.com

It's been 7 years..............

2009-02-20T07:11:00.002-06:00

Having Nash's 8th birthday this week made me realize how fast time passes....but the anniversary date of Dad's death makes it even more vivid for some reason.

Thinking, as always, of you Dad.

So you want to be an Advocate and don't know how? Let's bury the "R" word, together

2009-02-18T20:05:00.005-06:00

We know all our kids hear it. We know we all hear it sometimes from educated colleagues, even teachers. They all say "I don't mean (insert child's name with cognitive disability here"). Well, yes, you are referring to my son, her daughter or your cousin that has Down syndrome or an intellectual disability. Let's just put an end to it all together shall we? Let's all advocate against the "R" word; your family, co-workers, and especially your children that use the word.

MAYBE YOU'RE AN ADVOCATE, AND YOU JUST DON'T KNOW IT YET

Soeren Polumbo is a vocal advocate for people with disabilities - and for his own sister Olivia.

Olivia has an intellectual disability, but is more characterized, according to Polumbo, by an ability to give unconditional love to the people around her.

"She has never hated anyone, or hurt anyone's feelings, but has never been accepted," he said, in front of the Boise audience.

Polumbo has spoken before the Illinois Legislature and his speeches have made the rounds on YouTube. What's remarkable, is that his work started small - one speech at his high school, with a message that happened to be strong enough, and creative enough, to spread.

Speakers at the Monday rally urged students to take an active role in the Special Olympics movement - by speaking out like Polumbo, by creating public service announcements or coming up with other grassroots ways to end discrimination.
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In case you missed it before, here is Polumbo's speech:

Happy 8th Birthday Son!

2009-02-16T00:00:00.001-06:00

To my son on his eighth birthday.

Your Dad picked you up tonight to tote you to bed, and your legs almost dangled to the floor. It seemed you grew 4 inches in the last two days! You are 49 ½ inches tall, weigh about 55 pounds, and are all boy.

Your birthday week/weekend has been so fun! You love to drag your birthday on as long as possible, just like I love to do! You opened the two dozen presents from your Bounce Planet party yesterday where almost all the kids we invited showed up much to my stress level! Three of your friends wrote in their birthday card to you that you were their "best friend". You had wonderful behavior at your party, and well, I am just so darn proud of you.

Tonight I posted in the TRI21online.com board about what is “normal” to have a child with Down syndrome. Below is what I said about you and "normal". I guess because I see you as just our son, and that Down syndrome is just a part of you, that I have no idea of what “normal” is! You know you have Down syndrome, recognize others that also do, and well, you just say "Down syndrome Rocks!" I think you got that from Tarenne!

I love you my Nashtaters, and at eight, I know that you aren’t so little anymore. That brings several tears to my eyes………ok, many tears. Just because, well, you aren’t “needing” momma much these days. And that’s ok, because, well, it’s just probably “normal”.

Happy Birthday Bubba! We love you SOOOOOOOOOOOOO much! (family joke!).

------------------------------------------------------------------

I will join in. Not sure what “normal” is , especially when Down syndrome is thrown into the equation. I will just chime in, on Nash’s 8th birthday on the 16th, what we have experienced with our son, our only child.

We were thrilled to become pregnant with Nash, as I was 39, and we had been trying for a few years and had several miscarriages before and after Nash. So “normal” for us is a strange concept. I have no idea what “normal” is for any child-is there such a thing? I do know on this 8th birthday, I want a redo of his birth knowing what I do now. I cried for days after learning Nash probably had Down syndrome, and then weeks, months after getting the official diagnosis. Although I had premonitions, which are set forth in my Chapter 8 in GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives I thank god every day we didn't have the triple screen and amnio offered to us. By CHOICE. We had Nash. We made the decision we wouldn't terminate and declined all testing other than an ultrasound. I shudder to think if we hadn't decided to forgo prenatal testing, as we would have been so uneducated about Down syndrome and no doubt pressured to terminate, we may not have our beloved son with us today. Tears form thinking about this.....so I move on.

Nothing can really prepare you for the reality of being told you are going to have a child that this society views as not “normal”. Because the reality of having a child with Down syndrome is nothing society teaches us either. We have our child, who happens to have Down syndrome. It’s a part of him/her, but there is so so much more. I think that is what I wanted others to understand from our chapter in GIFTS.

So after Nash was born, and we grieved, we rolled up our sleeves and went to work. Parenting, learning, researching, and later, advocating. And always loving. But what was Nash doing this entire time?

He was following a “typical” timeline, well, as “typical” and “normal” as I thought all kids did! He rolled over at 10 weeks, slept through the night at 8 weeks (yes, I woke him up to make sure he was alive!), ate rice cereal at 4 months, the rest at 6. Waved Bye at 12 months, walked at 17-18 months, ate and drank the “typical” stuff at the appropriate times. But he still hates vegetables, and is a very picky eater. Is that “normal”? Dunno.

He knew 350 plus signs at age 3, read his first sight word at age 15 months, I kid you not. We were doing Love and Learning and he saw the last word in book one “hug” and leaned over and hugged me. I used to do flash cards with him, and he knew his abc’s by sight at age 3. He was potty trained at age 4, through the night at age 7. Now he just disappears and a few minutes of quiet I check on him and yell, “Nash where are you” and sometimes the response is “In the bathroom! I need privacy”! (another thing we just learned…..some things are “private”!)

Now his milestones are fewer and farer between. (or maybe I am not putting those little notches in MY belt anymore?) But we still celebrate them with huge high-fives and big smiles. And we know that it’s not all about milestones, and how much he can accomplish compared to those that are “normal”.

He plays flag football with the guys from his class.

He gets 3 point shots in Upward Bound basketball with the other 7-8 year olds. Not all the time, but he did yesterday!

He is reading at first grade level in second grade. But Math, well, let’s say he’s more right brain like his mom.

He has many friends, but only about 3 that invite him over for overnights or play. Is that “normal”, who knows.

He is a wiz on the computer! He can hunt and peck and find games like there is no tomorrow. But we also have found we need to put parental control on our computer!

And he is loved. He is happy (but I will never be a “they are always happy” spokeperson!)

But I do see frustration kicking in that he can’t do things like he wants; writing is so difficult for him. We are using a keyboard for spelling words right now. He gets very frustrated with anything having to do with fine motor skills, and I am ready to request an evaluation as it looks to me like a motor planning issue. He hates art class.

He has a wicked sense of humor, and can repeat volumes of movie lines, and lyrics to songs. It really is amazing. Wish he could apply it to math facts!

But most importantly, he is happy. He loves his movies, playing outside with his dog, Seger, and the neighborhood kids. He can now play outside without me hovering, goes to the creek with the kids, and well, insert “normal” here…..I know many think going to the creek to play isn’t “normal”!

So that is that. Who knows what is “normal”? Not us!

It's An Eco Store USA Doggie Bloggie Give-a-way!

2009-02-13T21:35:00.008-06:00

I was contacted by Eco Store to promote Eco-friendly products. I was told I could use them and provide a product review, or do a give-a-way.

I requested they send samples of their Eco Pets products, as Seger is always looking for skin soothing, environmentally friendly products for his manly-man golden retriever-gotta-get-hotspots skin. So, instead of using them, we are offering them up for a Bloggie Give-away!

so we have one Herbal Fresh Shampoo
Herbal Fresh Shampoo is expertly designed to penetrate safely into the skin where it is most effective. Mild enough for frequent use. Safe for dogs, cats, puppies and kittens over 6 weeks of age.
INGREDIENTS
Aqua (water), Coco Glucoside, Aloe Vera (certified organic),
Sodium Cocoamphoacetate, Glyceryl Oleate, Glycerin,
Polysorbate 20, Glycerin, Panthenol, Botanical extract blend of
Chamomile,Calendula and Sage, Cocodimonium Hydroxypropyl,
Hydrolyzed Rice Protein, Sodium Hydroxymethylglycinate,
Sodium Chloride (sea salt), Sweet Orange Essential Oil,
Ylang Ylang Essential Oil, Citric Acid.

And if just offering the Herbal Fresh All Natural Shampoo wasn't enough, I also have the Eco Pets All Natural Leave-in Conditioner

Spray conditioner directly onto coat or into palm of hands and rub into coat for lustrous shine and easy detangling. Spray directly into matts or knows and let sit 5 minutes before combing. Safe and effective for dogs, cats, puppies and kittens over 6weeks of age.
INGREDIENTS
Aqua (water), Aloe Vera (certified organic), Cocodimonium
Hydroxypropyl Hydrolyzed Rice Protein, Glycerin, Sodium Cocyl
Glutamate, Sodium Cocoyl Hydrolyzed Wheat Protein, Disodium
Capryloyl PCA, Polysorbate 20, Botanical extract blend of
Chamolmile, Arnica, Pine Bark, Basil and Cherry Bark, Sodium
Hyydroxymethyglycinate, Panthenol, Sweet Orange Esstential
Oil, Ylang Ylang Essential Oil, Citric Acid

So my bloggie friends, and a special shout out to those buds at CHAZ, just leave a message here, tell us why your wonderful canine would love these products, and Nash and Seger will draw for the winner on Nash's 8th Birthday, Monday February 16th! We will post the winner on Wednesday February 18th.

Then you try the products and let us know how you like them, eh?

And Hoosier Hysteria continues.....team photos!

2009-02-13T21:15:00.005-06:00

Notice the guy with the biggest grin?

and a video recap....

You know you're a mom when.....

2009-02-13T12:26:00.004-06:00

You are focusing on your appellate brief, transcripts topping every surface in your office, listening to background music on your IPOD, and suddenly...

The "Chicken Dance" comes on

Dr. William Cohen's Obituary and guest book

2009-02-09T10:55:00.001-06:00

His obituary is now online, along with a guest book where you can leave a note as to Bill's impact in your and your child's lives.

Dr. William I. Cohen

Dr. William I. Cohen (Bill), 62, of Pittsburgh, died of a heart attack on February 6, 2009 while in-line skating with friends in Miami, FL. Dr. Cohen was a Developmental -Behavioral Pediatrician at the Child Development Unit and Director of the Down Syndrome Center, both located at the Children's Hospital of Pittsburgh of UPMC. He also was a professor of Pediatrics and Psychiatry at the University of Pittsburgh School of Medicine, where he directed two courses for undergraduate medical students. Dr. Cohen was a member of the Clinical Advisory Board of the National Down Syndrome Society (NDSS) and the Scientific Advisory Board for the Down Syndrome Research and Treatment Foundation. Dr. Cohen was a co-founder and co-chair of the Down Syndrome Medical Interest Group (DSMIG), which produced the seminal healthcare guidelines for all persons with Down Syndrome, ages 0-18. He also co-authored the book, Down Syndrome: Visions for the 21st Century, published in 2002 of behalf of the NDSS. For all of these visionary efforts, he was given a Clinical Service Award by the NDSS in 2004.

In addition to his work on preventive health care for individuals with Down Syndrome, Dr. Cohen was a leader in teaching and studying doctor-patient communication, family adaptation to chronic medical conditions, clinical hypnosis, and family therapy. His most recent area of interest was in the use of groups to enhance the physician-patient relationship and began running such groups at Children's Hospital of Pittsburgh in 2000. He was a certified Balint Group Lleader and he co-led groups for residents in Obstetrics and Gynecology at Magee-Womens Hospital of UPMC, and for Pediatric residents and Pediatric Hematology- Oncology fellows at Children's Hospital. Dr. Cohen won numerous awards including Award for Outstanding Clinical Care, Children's Hospital of Pittsburgh Medical Staff and Pittsburgh Magazine named him one of Pittsburgh's "Top Doctors" several times, most recently in 2008, for his work in Pediatrics.

In January 2006, he was inducted as a member of the first group of UPSOM faculty members to join the Academy of Master Educators. He was a clinical member of the American Association of Marriage and Family Therapy, the American Academy of Pediatrics, the Society for Development and Behavioral Pediatrics, Ambulatory Pediatric Association, and the American Balint Society. Dr. Cohen spoke internationally and published extensively and over the years, Dr. Cohen became internationally recognized for his expertise in the care of children and adults with Down Syndrome. Dr. Cohen received a Bachelor of Arts in Russian Linguistics at the University of Rochester and a Master of Arts in Russian Literature at the University of Chicago. He attended medical school at the State University of New York at Buffalo, graduating in 1975. He performed his pediatric internship, residency and fellowship training at Children's Hospital of Pittsburgh of UPMC beginning in 1978. He is survived by his mother Ethel Cohen of Yorktown Heights, NY, brother Alan Cohen of Hoboken, NJ, daughter Sarah Cohen of Los Angeles, CA, son and daughter- in-law Benjamin and Raquel Cohen of Washington D.C. and his partner Donald Arnheim of Pittsburgh.

Dr. Cohen's funeral will be at 3pm Tuesday, February 10, 2009 in the Sanctuary of Rodef Shalom Temple, 4905 Fifth Ave., Oakland, followed by a graveside service for family and friends at West View Cemetery of Rodef Shalom Congregation. The family will be receiving in the Aaron Courtyard of Rodef Shalom Temple beginning at 1:30pm. An additional memorial service will be held on Sunday, February 15, 2009 at Temple Israel, Northern Westchester, New York at noon. Memorial contributions may be made in his name to the National Down Syndrome Society, New York (ndss.org), the Down Syndrome Research and Treatment Foundation (dsrtf.org) or Down Syndrome Association of Pittsburgh (dsapgh.org).

Countless people around the world will miss his generosity of spirit, unwavering support, unconditional love and endless lust for life. Arrangements by BURTON L. HIRSCH FUNERAL HOME, INC., (412-521-2600)

The Ds community lost a great man....Dr. William Cohen

2009-02-07T15:06:00.005-06:00

I just found out through a friend that lives in Pittsburgh that Dr. William Cohen passed away Friday night of a massive heart attack. For those that frequent the Ds conferences I know you have at least heard him share his wisdom about Down syndrome and the recent research being conducted, and probably, as we have, met him and shared a cocktail or two.

He was the Director of the Ds Center at Children's Hospital in Pittsburgh for those that weren't fortunate to have met or heard his conferences.

What a wonderful advocate for our kids he was. He will be greatly missed.

Here is his bio. I will share more as I find out.

Peace Bill.

EDITED TO ADD:
This is the notice sent out to the DS community in Pittsburgh:

Dear Families and Friends of the Down Syndrome Center,

It is with great sadness that I write to you to tell you that Dr. William Cohen passed away on Friday, Feb 6th (in Florida from a massive heart-attack). For almost the past 20 years, Dr. Cohen has devoted his professional career to caring for children and adults with Down syndrome. and supporting their families. Dr. Cohen was known throughout the world as an expert on Down syndrome. Families in Western Pennsylvania truly had a gift in Dr. Cohen.

Arrangements to celebrate Dr. Cohen's life will be posted in the Pittsburgh Post-Gazette. A memorial service will be held by Children's Hospital of Pittsburgh at a later date. I will send you an email once those arrangements are finalized.

If you are interested in sending a condolence, please use the address below and I will forward your thoughts onto Dr Cohen's family.

Sincerely,

Sheila

Sheila A. Cannon, MEd
Program Coordinator
Down Syndrome Center
Children's Hospital of Pittsburgh/UPMC
Mailing address: 3705 Fifth Avenue
Clinic Address: 3420 Fifth Avenue
Pittsburgh, PA 15213

2/9
NDSS has posted a tribute to Dr. Cohen HERE

Patrick Thibideau just happens to have Down syndrome, and scores!

2009-02-05T07:01:00.008-06:00

Nash saw Patrick on the Today Show this morning. It was quite fun watching Nash watch Patrick, another boy with Down syndrome who loves to play basketball. Nash yelled DOWN SYNDROME ROCKS! Its so nice to have mentors for Nash to watch shoot and score, just like he does in the 2nd grade, just like anyone else. Except not all kids can hit three pointers!

Visit msnbc.com for Breaking News, World News, and News about the Economy

Rock On Patrick!
Student With Down Syndrome Scores For Greely High

CUMBERLAND (NEWS CENTER) -- Like many of us, Patrick Thibideau has dreamed of being a star athlete. On Tuesday night, Patrick, who has Down Syndrome, saw his dream come true when he went from team manager to starting player.

Patrick made sure his opportunity counted, scoring a 3-pointer with just his second shot. Then, with one minute left in the game, fans stood and chanted Patrick's name. The coach put him back in the game and he delivered -- sinking another three-pointer at the buzzer. Patrick's teammates swarmed around him, and carried him off the court.

The night was extra special for the Thibideau family. Just two weeks ago, Patrick's father Perry, an assistant coach for the team, suffered a stroke. He almost didn't make the game, but when Perry's doctors heard the situation, they let him out of the hospital just in time to see his son play. Perry said seeing his son score was thrilling.

"It was kind of surprising to me, I couldn't see who had the ball cause I was sitting way down here," says Perry. "But when I saw the ball go up and every one stand up, I said, yeah, I knew that was Patrick. Especially when it went in, that was fantastic! Best feeling you could ever have in your life... become a parent and you find out why."

Patrick's performance was thrilling to the whole Greely High School boys' team. Sam Thompson offered up his starting spot to let Patrick play.
"He comes to practice every day. He comes to every game. He works really hard. He just deserves it," said Thompson.

------------------------------------
I also noted one of the comments at the bottom of the story...hmmmm too true!

nice story...but was he allowed to try out for the team like every one else in the first place? sounds like he may have had some potential...treating someone differently because they have a "disability" can be a two edged sword.

Considering Termination of your baby because of a prenatal diagnosis of Down syndrome?

2009-02-01T13:53:00.001-06:00

I get a lot of hits on my blog from googling "termination and down syndrome".

I hope you look around and don't just click away. I hope you email me for a copy of the Gifts book, ask questions, research, and call your local Down syndrome association for referrals to talk to a local couple that have walked the walked. Or call me. I will give you my phone number if you email me.

Yes, it's your decision. And I am not going to judge you. Bigdawg and I discussed our options when we became pregnant with Nash at my age of 39, and we decided against prenatal testing. But, again, everyday I thank god we didn't have an amnio. Perhaps we would have run scared too, and then we wouldn't have known then, what we know now.

Instead of being afraid, be informed.

Do you live in Washington State and can help? Puppy Mill Story

2009-01-27T20:01:00.002-06:00

CNN VIDEO

Raids bring in 600 dogs, then puppies arrive
It was hard enough on animal shelters in northwest Washington state when nearly 600 dogs were seized in raids. Then they started having puppies.

EVERETT, Wash. —
It was hard enough on animal shelters in northwest Washington state when nearly 600 dogs were seized in raids. Then they started having puppies.

About 80 percent of the animals seized in Snohomish and Skagit counties in the past week - predominantly miniature Chihuahuas, shih tzus, poodles, Yorkshire terriers and so-called "designer" dogs - appear to be pregnant, officials said.

Everett Animal Services received 155 dogs that were taken from a site near Gold Bar in Snohomish County on Jan. 16, Director Bud Wessman said.

"We've already had two litters born," Wessman told The Seattle Times. "We have six that will give birth over the weekend and probably another 10 litters coming up in the next week."

According to documents released Friday in Evergreen District Court, investigators have been told that the Gold Bar operation made millions of a dollars a year, The Herald of Everett reported.

The site has been linked to a second property in Skagit County where authorities seized 135 dogs on Wednesday and returned Friday to seize the remaining 308.

The owner of the second property, near Mount Vernon, is the mother of the woman who owns the Snohomish County property.

Investigators believe a puppy mill was being run primarily out of the mother's five-acre property under the name Mountain View Kennel, Skagit County sheriff's Deputy Will Reichardt said.

He said the first batch was considered to be in immediate need of care because the dogs looked sick, had matted fur, were standing in their own feces and had been left without food and water, were deemed to be in need of immediate medical care, he said.

The second batch dogs was taken after authorities determined they might be infected with coccidia, a potentially deadly intestinal parasite that causes diarrhea and was found in two dogs from the initial raid, Reichardt said.

Most of the dogs from both batches are now at the Skagit County Fairgrounds, although some have been placed in foster homes, he added.

In the earlier raid in Snohomish County, deputies and animal control officers said the dogs they seized were sick, filthy and covered with fleas.

The dogs were sold from a third family property in the town of Snohomish, described as a "nice country house," and through the Internet site Wags & Wiggles Teacups, said Paula Helinski, who lives near the Skagit County property and has spent years collecting documents on the operation.

Investigators went to the Snohomish property on Jan. 16 and found 44 dogs, more than allowed by the kennel permit, but left the animals there because they appeared to be in good shape, Snohomish County Animal Control manager Vicki Lubrin said.

Authorities in the two counties say they are cooperating in the investigation and may file animal cruelty charges.
----------------------------------------------------------------
and what you can do:

600 PUPPY MILL DOGS RESCUED

They came from filth and darkness…and into the light. Over 600 puppies found in a dank kennel, sheltered in the woods one hour outside Seattle, Washington.

Pasado's Safe Haven is working with Animal Shelters to evacuate animals using Pasado's Spay Station, offering to take in all overflow dogs and 24-hour veterinary assistance (at our own expense) to avoid any animals unnecessarily being euthanized.

Staff and volunteers will be on call to rehabilitate and heal these dogs who have been enslaved in cages for most, if not all, of their lives - in the name of profits.

With supplies and man power now depleted in the evacuation of these animals, we need your help to successfully rebound - as we continue to help animals in the deep freeze.

Please make a donation or purchase a gift card for WalMart, PetsMART, or Costco. We can buy anything we need when we're on the road should we run out of beds, shelters, or food. scheduled to round up 70 volunteers and truckloads of dog shelters, food, flea treatment, and toys for pets of the poor, left in the freezing cold.

HOW TO HELP THE PUPPY MILL FIGHT:

1) Donate to Pasado's: The money will help us to supply veterinary services and keep our transport vehicles at the ready for such emergencies

2) Don't Shop, ADOPT! NEVER buy an animal from a pet store

3) Share your puppy mill stories with Pasado's: every bit of information helps us investigate unfit environments - contact us.

4) Educate: Respectfully help educate friends and family about the harms of buying animals from pet stores.

Thank you, from our hearts, for what you're doing from the comfort of your home or office. Isn't it amazing what we all can do as a team?

For the animals,

Susan Michaels
Founder, Pasado's Safe Haven
www.pasadosafehaven.org

Diane Rich
Diane Rich Dog Training, LLC
www.spokesdog.com
askdianerich@gmail.com

Introducing the players.......

2009-01-25T10:42:00.005-06:00

Nash Huffman! (crowd roars....hear it?)

He has so much fun playing Basketball! He got the Best Defense award this week.

CLICK HERE for videos

What would you do if the Government gave you $20,000?

2009-01-23T14:50:00.002-06:00

I got this off of Greta and found the answers interesting and wanted to ask any of you:

If the Federal Government sent you $20,000 today, what would you do with it? And how soon?

If the Federal Government sent each member of your family $20,000 today what would EACH member in your family do with it?

Adji Desir - boy with special needs MISSING

2009-01-21T09:08:00.004-06:00

ADJI DESIR
Case Type: Endangered Missing
DOB: Oct 22, 2002 Sex: Male
Missing Date: Jan 10, 2009 Race: Black
Age Now: 6 Height: 3'0" (91 cm)
Missing City: IMMOKALEE Weight: 45 lbs (20 kg)
Missing State : FL Hair Color: Black
Missing Country: United States Eye Color: Brown
Case Number: NCMC1113684
Circumstances: He was last seen on January 10, 2009. He was last seen wearing a blue and yellow t-shirt, blue and yellow shorts, and black and gray sneakers.

ANYONE HAVING INFORMATION SHOULD CONTACT
National Center for Missing & Exploited Children
1-800-843-5678 (1-800-THE-LOST)

Collier County Sheriff's Office (Florida) 1-239-793-9300

History..........Obama swearing in.

2009-01-20T11:31:00.002-06:00

Coastal Carolina University's (CCU) will launch Coastal Carolina University LIFE in Fall 2009

2009-01-15T19:14:00.002-06:00

Yet another reason to head south and retire in South Carolina, on the beach, as I am dreaming of warmer weather while it is -10 degrees in Indiana.

Coastal Carolina University Launches Inclusive Postsecondary Opportunities for Students with Intellectual Disabilities More Info

FOR IMMEDIATE RELEASE
Contact: Sarah Schleider sschleider@ndss.org 212-763-4369

Coastal Carolina University Launches Inclusive Postsecondary Opportunities for Students with Intellectual Disabilities

New York, NY (January 15, 2009). , an inclusive four-year postsecondary education program for students with intellectual disabilities. The College Transition Connection (CTC) is funding the development of this innovative model program, with financial support from the State of South Carolina. CTC Chair Donald A. Bailey announced that the grant will total $155,000 over three years. The National Down Syndrome Society (NDSS) is providing technical assistance and grant administration.

William H. Alford, Chair of the CCU Board of Trustees, CCU President David A. DeCenzo, Senior Vice President and Provost Robert Sheehan, CCU faculty, CTC board members, NDSS representatives, and prospective students with disabilities and their parents were present when the program was announced today at an event on the Coastal Carolina University campus. Coastal Carolina University LIFE (Learning Is For Everyone) is designed to promote a smooth and effective transition from secondary schools to a four-year higher education institution, as well as provide these postsecondary opportunities on a college campus.

"The innovative, collaborative design of Coastal Carolina University LIFE, strong support of the entire university community, leadership and funding from the College Transition Connection and State of South Carolina will result in tremendous new opportunities for students with intellectual disabilities in South Carolina and an outstanding model for the rest of the country", said Stephanie Smith Lee, NDSS Senior Policy Advisor.

The four-year program will provide both on and off-campus residential opportunities and participation in university classes with support. It will emphasize student independence and personal development, choice making, individualized work environments, communication skills, money skills, integration within the college community, and transition to an integrated work environment. Spadoni College of Education faculty members Emma Savage-Davis and Gayle Disney will co-lead the program.

The pilot cohort of up to six students will be admitted in August 2009 with up to six more students accepted each fall thereafter. The program will enable students with intellectual disabilities the opportunity to address four key primary areas: (1) academic enrichment, (2) socialization, (3) independent living skills, and (4) competitive or supported employment.

Coastal Carolina University LIFE is supported by a partnership between CTC, NDSS, and the Center for Disability Resources at the University of South Carolina.

For more information visit: http://www.coastal.edu/cec/LIFEprogram.html

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more about NDSS, visit http://www.ndss.org.

About Coastal Carolina University

Coastal Carolina University is a dynamic, public, comprehensive liberal arts institution located in Conway, S.C., just minutes from the resort area of Myrtle Beach. The University offers baccalaureate programs to more than 8,000 students in 40 fields of study including acclaimed programs in marine science, resort tourism and professional golf management. Graduate programs include an MBA as well as master's degrees in education and coastal marine and wetland studies. For more information, visit http://www.coastal.edu.

So you wanna see some Hoosier basketball?

2009-01-11T20:54:00.009-06:00

Nash is playing on our local Upward Bound basketball league this year. It's a little bit less competitive than the Girls and Boys Club basketball he played with last year in first grade, and also is Christian based. It just seemed like a better fit for him this year, and he is playing on a team for first and second graders.

With only three practices, and right off Christmas vacation, they had their first game on Saturday. I have a video of them calling the players in, announcing their names before the game, which I will post later. But, drum roll........Nash got at least two baskets, some say three but I didn't see the third, and got the BEST OFFENSE star award for the team. Oh. My. God.

The boys on the team are so awesome. I didn't pass anything out about Down syndrome to the team, as well, now I understand why not many "older" kids parents are on the internet boards lately. It's just getting to be not such a big deal, and no time!

Coach Derek is the best! BigDawg talked to Coach before the practices started and told him that while Nash does have Down syndrome, he understands, can learn the game, and play, and just needs to be shown how it is done, not just told.

So ready to see one of Nash's baskets? Its a little blurry as we haven't figured out how to upload from our video camera yet, but Nash is the player in white shorts passing the ball in-bounds runs down the court, runs back, then gets the ball via rebound pass and dribbles down to the basket and SCORES! You might hear me say "I'm trying" because BigDawg yelled Go Nash! and Nash yells back "I'm trying"! as he is dribbling....oh so funny our guy.

how many ref's high five the players? Awesome!

Best Offense Award

Add Vanderbuilt University to the list of post-secondary possibilities for those with developmental disabilities

2009-01-09T11:13:00.003-06:00

Developmental disabilities won't shut door to college
VU program is first in Tennessee to offer courses, life skills

By Rachel Stults • THE TENNESSEAN • December 29, 2008

But there has never been a college program available in Tennessee for the Brentwood High School senior who has Down syndrome — until now.

Vanderbilt University has received a three-year grant to begin a post-secondary education program for students with developmental disabilities, the first of its kind in the state.

Officials at the university hope the program, aimed at providing not only continuing education but also career development, will pave the way for more like it across Tennessee, and will help shed stereotypes and raise awareness about the capabilities and talents of people with developmental disabilities.

The grant, which will give Vanderbilt $175,000 a year for three years, comes from the Tennessee Council on Developmental Disabilities.

Vanderbilt will accept its first students in January 2010, through the university's Kennedy Center for Excellence in Developmental Disabilities.

"Students coming out of Tennessee high schools who have intellectual disabilities, they like to have options and they like options their peers have," said Wanda Willis, executive director of the Tennessee Council on Developmental Disabilities. "That happens to include some form of continuing education — whereas, in the past, choices were often limited to opportunities in the community that were specifically for the person with the disability and not anybody else."

Each year, eight young adults will take a mix of undergraduate, life-skills and technical courses, as well as take part in campus extracurricular activities with Vanderbilt undergraduates. Although the program will begin non-residential, officials hope that students eventually may be able to live on campus.

Regular Vanderbilt University undergraduate courses will be offered, life-skills courses with internships will be provided, and technical courses will be available through the Tennessee Technology Centers. Tuition will be about $10,000 a year, with the opportunity for scholarships.

"It's not going to be the same course of study for any student, just like it's not the same course of study for any other college student," said Elise McMillan, co-director of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities.

Tennessee falls behind when it comes to offering some kind of college program to students with disabilities. New York and Maryland have at least 15 programs, Massachusetts has 13 and California has at least 10, according to ThinkCollege.net, a Web site that offers information for students with disabilities about post-secondary education programs. Tennessee is one of 15 states that have no programs.

Officials at Vanderbilt and the Tennessee Council on Developmental Disabilities plan to work with other schools in the state to create more programs.

"Just like there's not one college that's right for every student, we need to see a number of programs in the state," McMillan said. "In many ways our state has made great strides in providing opportunities for people with intellectual disabilities, but there are some other areas where the opportunities are extremely limited. And this is one of those areas."

'Ahead of the game'
But the years spent brainstorming and planning for the inaugural program here should pay off, advocates say.

"I think in many ways Tennessee is going to be ahead of the game," Willis said. "We are going to have a model program that offers meaningful continuing education classes. And once we get a good model on the ground it's going to move very quickly because we know there's a market out there.

"I think we tend to underestimate people who have a disability — we tend to underestimate both their interest and ability to participate. This certainly, without a doubt, will be proven with this program."

Matt Moore is one of those students. The 19-year-old now has a part-time job at Publix, where he bags groceries — an opportunity that he and his mother, Sheila Moore, know is providing valuable life skills. But they both want to take the next step.

"I like college," Matt said. "I want to go to college and get job skills. I want to get a job at Vanderbilt children's hospital."

Sheila Moore, who also is the executive director of the Down Syndrome Association of Middle Tennessee, said Matt is already telling everybody he meets that he's going to college at Vanderbilt. Sometimes, his announcement draws puzzled looks. But she's hoping that will change.

"His dad and I aren't going to live forever. … We hope this will be a program that will help him be as independent as possible," Moore said.

"It would be wonderful if Matthew could have a job where he's got his benefits right along with other employees, wonderful if he could live in an apartment, maybe with a roommate or maybe alone. I think it's going to be amazing what we're going to see of our kids and of our community."

Contact Rachel Stults at 615-726-8904 or rstults@tennessean.com.

Happy New Year!

2009-01-08T08:57:00.014-06:00

Well our hiatus is over, and we are back to the land of the living. We had a wonderful, relaxing Christmas, and then headed to Las Vegas for a week to visit with my mother in law, father in law, and their poodle ZZ, and stayed in their condo. Things we did:

Circus Circus Adventuredome- Nash bungie jumped, found a friend and road rides, and loved the water raft where he and dad got wet!

Treasure Island- saw the pirate show where the pirates jumped into the water and one came up and shook Nash's hand to his delight

Mirage- Volcano eruption was quite cool

Japanese restaurant we went to (will have to find the name) was wonderful and highly recommend!

Emeril's Fishhouse- very highly over rated, over priced.....our hero Emeril's image is dashed.

Golden Nugget- we got a fantastic deal for two nights on a two story, 1800 sq ft Spa Tower suite complete with jacuzzi, steam shower, bedet, bar! The Tank pool with sharks was a complete hit with Nash, and the hot tub was wonderfully placed right next to the poolside bar for Momma!

No I didn't win big...won, lost, won, lost. You know the drill. I will play less Wheel of Fortune and more blackjack next time.

The tram system is wonderful so you can avoid the crowds on the road and walkways. Nash liked those at night. What was wonderful was that grandma and grandpa had Nashtime so Daddy and I could head out to do adult things! Jeff and I saw a wondeful show, had a fun New Years Eve and celebrated his birthday! Stop by BigDawgs site and wish him a belated happy birthday!

I hope you all have a 2009 that is full of promises!

Nash and his new buddy

Big Hit for Nash, scary for mom!
Nash did the bungie!

The Water Slide at Adventuredome was a big SPLASH!

MGM pics
Golden Nugget

The Tank!

Our Holiday Card Photo

2009-01-01T09:49:00.000-06:00

Happy Holidays to All! Hope 2009 brings us all better health and happiness!

This is a Buddy Walk photo that I just adore, and had to wait to post it as I gave them as presents to family.

I caught Seger waiting for Santa............

2008-12-23T16:41:00.000-06:00

One good thing about Pet Stores......

2008-12-21T19:56:00.003-06:00

Santa, and Reindeer visit!

Our neighbors and Nash and I went to Petsmart to see Santa with Seger in tow. Quite the scene with a frantically excited golden retriever glad to be out of the house! Its been zero degrees the past day and Seger has had little outside time......so he went crazy on Santa!

I think Nash was getting a little stir crazy too.....

Then on to Pet Supplies Plus to get the most expensive dog food made, and wowza, we saw Holly the reindeer!

fun.

Nash, Kevin, Seger and Becca

oops, a collar but no Seger!

For "my" Ladies, and Yayas............

2008-12-19T19:51:00.001-06:00

you know who you are.

Transcending: Words on Women and Strength by Kelly Corrigan

Thinking of Annette on this day, and always.....

2008-12-16T00:00:00.000-06:00

I searched for my friend's voice today, as I have missed her. One year ago today Annette passed away from sonovial sarcoma, leaving behind two amazing boys, Kurtis and Ryan, and a wonderful husband, Tom, and a loving sister Lisa, and their amazing Dad. Their wife, mom, grandma, mother-in-law had just passed away one year earlier.

I found it. And I listened, knowing that Nash loves to wrestle too, so that added to my joy of listening to the clip.

Annette, you are so, so missed. I can't log onto the tri21online website anymore knowing you aren't there, it's just not the same.

Just know I always think of you, marvel in how you spent the last 4 months of your life knowing you were leaving us soon, but yet still managed to come down to Indiana and spend that time with us at the TRI21 IRL and DSI Buddy Walk.

I am so, so thankful that Shannon and I traveled to your service, met your family, and brought our Tri21 board's prayers to those that needed it, Shannon's tribute was wonderful.

Know that Lisa is an amazing sister ... wow, she takes my breath away with how she is carrying on your efforts and memory! And know you made such, such a difference in the world. How many can say that?

So in your memory and with our love, I want to reprint Shannon's, our, message:

As I sit down to write this at my computer, how appropriate that I am at the computer, and how ironic that I am at a loss for words. Annette will laugh at this, as will the other people of our group, Trisomy 21 Online Support Group, who have asked me to convey our love for Annette. As an advocate and a mother, friend, mentor, I am rarely short on words. Never short on abbreviations, (LOL , laugh out loud for those of you that aren’t into the computer chat thing). We need new abbreviations today; for weeping out loud, for my heart is aching, for I am feeling the pain of men and women around the world that are grieving.

Yes, I mean around the globe. That is how far Annette’s love, spirit, and kindness have reached. We have known Annette through this online support group for years. As a group, we have shared joys, hugs, milestones, and challenges great and small together. We being, Annette and I, but also our online community, a community so close we would call ourselves sisters. We number in the hundreds. The core of this sisterhood, and sometimes brotherhood, is that each of us received an incredible gift of parenting a child with Trisomy 21, or Down Syndrome. This bond brought Annette and her family all the way down from Canada to a little town in Indiana. Here, many of our group strengthened our friendship, watched our kids run and play, shared the love of our families and the passion for our faith. This was not the only time we were to be blessed with a visit from Annette. Many from our board could share stories just as poignant. She went to great lengths to have fellowship with her kindred spirits. She even pressed through her pain to take one last visit to see many of us in Indianapolis. That visit will remain in our hearts as one of highest highs and most bittersweet goodbyes. I am sure those of you sitting here, celebrating Annette’s life are not surprised to hear these words of Annette’s strength and perseverance through adversity.

Annette, this is our last post to you. The rest of our correspondance will have to be during our moments of prayer and meditation, until we meet again and dance the tootey ta all together. You have fought the good fight. You have cherished the gifts God has bestowed on you. You have lived a well lived life. Rest our friend Annette, we will continue the fight for you. We will use the light of your spirit to guide us. Thank you for sharing your life, passion, family and faith with us. Your friendship has changed our lives. Your gift will not be forgotten. Godspeed on your journey Home Sister Annette.

And Annette asked in her service...yes she did....that we sing this song, In Christ Alone, "and don't sing it whimpy" So let's sing again for her today, and no whimpy voices!

I miss you Annette, lots of love. And Tom, Lisa and family, you are all in our thoughts and prayers.

November 2, 1966 - December 16, 2007

Time to get the tree!

2008-12-12T21:37:00.000-06:00

nashmom
Originally uploaded by Nashtaters

We got our Christmas Tree, and brrrrrrrrrrr it was a cold day in Indiana at 22 degrees!

Nicole and family visited us.......

2008-12-07T22:20:00.000-06:00

Holidays 070
Originally uploaded by Nashtaters

over Thanksgiving weekend, and oh how we love to get together! Nash has SUCH a bond with "Aunt" Nicole....

love you all and thanks for stopping by after your visit with the Ginther family! (FYI I used to stable my horse Blue there - what a small world!)

Aunt Nicole and Nash

2008-12-07T22:18:00.008-06:00

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Originally uploaded by Nashtaters

ham it up!

A Thanksgiving weekend vist from the Mahers

2008-12-07T22:18:00.001-06:00

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Originally uploaded by Nashtaters

and Joe and Jeff hang...........right by the food of course!

Emery and Seger

2008-12-07T22:17:00.001-06:00

Holidays 073
Originally uploaded by Nashtaters

Nash and Tarenne- at least they were sitting close!

2008-12-07T22:16:00.006-06:00

Originally uploaded by Nashtaters

Nicole's Tarenne

2008-12-07T22:16:00.003-06:00

Holidays 083
Originally uploaded by Nashtaters

is such a doll!

Nash and his girlies

2008-12-07T22:15:00.003-06:00

Holidays 079
Originally uploaded by Nashtaters

Loving snow

2008-12-07T22:15:00.001-06:00

Holidays 092
Originally uploaded by Nashtaters

Goodbye Fall!

2008-12-07T22:14:00.002-06:00

Holidays 100
Originally uploaded by Nashtaters

Our tradition as of last year, the tossing of the pumpins before decorating for Christmas! Down into the gully they go, by the creek, to hopefully feed some animals.

The Retriever always retrieves!

2008-12-07T22:13:00.003-06:00

Holidays 103
Originally uploaded by Nashtaters

Threw it back!

2008-12-07T22:13:00.001-06:00

Holidays 104
Originally uploaded by Nashtaters

Nash and Seger

2008-12-07T22:01:00.003-06:00

Holidays 145
Originally uploaded by Nashtaters

My men take on their challenge

2008-12-07T22:01:00.001-06:00

Holidays 161
Originally uploaded by Nashtaters

and while I do the majority, before Nash and Dad left for Nash's friend's birthday party, they helped out a bit, topped off the tree with the Santa, and put the Celebrate ornament up, given by Emma Sage to Nash and put up annually!

2008-12-07T21:59:00.001-06:00

Holidays 146
Originally uploaded by Nashtaters

The men give Mom grief

2008-12-07T21:42:00.002-06:00

Holidays 112
Originally uploaded by Nashtaters

after checking out a "few" trees, the men decide this IS the Fraser Fir they want (or are so cold they don't care anymore!)

Hmmmmmmm "two peas in a podule" as we used to say growing up!

Happy Thanksgiving!

2008-11-26T18:42:00.005-06:00

We are expecting family and friends over the weekend, and so wanted to wish all of you a very Happy Thankgsgiving.
I pieced together a Turkey Platter Dad had purchased during one of his antique forays in his final years; one that resulted in many a purchase near our home in Naperville/Wheaton Illinois area where we lived right after we got married. It was a nice Turkey Platter. And he wrote a little ditty to go along with it, which I placed on the platter today for this photo.

I was thinking of Dad again as I purchased some birdseed today; oily sunflower seeds. In my head I heard his annual "soooo do you have your winter bird feeding program established?" And I did just that.

Have a wonderful Thanksgiving!

John Jr.

2008-11-25T22:08:00.004-06:00

Today John would have been 48, my age. He didn't know it, but he and I were to be together in our lifetime...........

sighs.

yes, he was the only one I would have ever cheated with. Just ask BigDawg, he knows.

I actually remember John Jr. saluting his dad during the funeral...on TV of course. Well, I think I do. That's what counts anyway.

I don't have celebrity gushes, fawn over fashion or follow tabloid gossip, but this is one faction of my life that I keep close; my crush on John-John....and I know I shouldn't call him that as he hated it, but I did, and do.

So Happy Birthday hunky hee man..............I hope you are doing ok. And yes, we WILL meet someday.

Jeff and Nash's first Notre Dame Game!

2008-11-22T15:35:00.005-06:00

Jeff and Nash's first Notre Dame Game!
Originally uploaded by Nashtaters

Jeff and Nash's first Notre Dame football game! for details head over to BigDawg's blog!

Nash's First Notre Dame Game

2008-11-22T15:34:00.001-06:00

Nash's First Notre Dame Game
Originally uploaded by Nashtaters

The men took off early this morning to head up to South Bend to see the IRISH play for the first time! Nash was beside himself all week, ran up the stairs this morning and yelled "GO IRISH"!

Gone Fishin'

2008-11-13T13:19:00.003-06:00

Well, I hate to fish and I would rather be fishing right now. I am so, so swamped at work. I have so many briefs due that I will be working late each night, all weekend, all next week late again, and all next weekend. Then to add to this joy we have a continued case conference next Wednesday to further delve into some education issues with our boy.

And I started working for the State for fewer hours and better benefits. hmmmmmm

So if I don't "see" you have a wonderful Thanksgiving and give us some luck next week, and prayers for my sanity would be nice!

Happy Veterans Day

2008-11-11T08:23:00.002-06:00

In memory of DAD, and to all that fight for our freedoms.

The Holidays are coming, the Holidays are coming!

2008-11-10T22:45:00.005-06:00

What a wonderful, full weekend we had! The weather is turning chilly, ok, cold. Leaves are falling and much winterizing needs to be done around our almost 2 acres. But what did we do all weekend? Have fun!

Nash had all "green" cards at school (I think...several days were skipped with notes last week so I would ask Nash how his day went, and he responded he got a green card (no behavior issues) so I went with it!) so he was able to invite a friend to the opening of Madegascar 2. We picked up his chosen buddy from his class at his home, and headed to lunch at Chick-Fil-A (where did you notice the chicken nuggets have shrunk to thumb-nail size? What's up with that?), then to the movie. Eating lunch of course did not detour these boys from wanting candy and popcorn, and who could blame them (or me!). So we watched previews (Marley and Me looks like one fantastic movie....now to read the book and get my tears out beforehand is a must) and many great movies for kids/family are coming up for the holidays. The movie was pretty good; the first 45 minutes topped the rest of the movie but could be because the theater started warming up and I was ready to get some fresh air....many adult-themed one-liners but I think that is what many good family movies have so all enjoy it- Gotta love the penguins, and the monkeys were awesome too! No F-bombs are a plus always :)

Nash's grandma and grandpa came down Saturday late afternoon as grandpa had a heart check up at St. Vincent on Monday morning, so we took the opportunity to blast out for a date night! We used a gift certificate given to us last Christmas at Z's Oyster Bar & Steakhouse and enjoyed the time out together. Oysters, cocktails, scallops, wonderful wedge salad. Yum! While I enjoyed the dinner, I do have to say I am becoming a bit cynical about eating out lately. Service seems mediocre, prices are over the top, and let's just say Red Lobster is rising to the top of my favorite dining pleasures lately!

On Sunday I cooked a big breakfast and we lazed around watching movies. Nash and I headed outside for a bit as I do love to work the leaves, blow, clean up and ready for winter. I cleaned out leaves from the fish pond, warmed up the hot tub a degree or two, and took some dead foliage from the flower bed. Nash and Seger got to rough and tumble a bit Sunday as spits of snow came from above. While I love seasons, I can say that the snow/cold is not settling as well with us these years! Arthur Itis is becoming an uninvited guest in the thumbs and shoulders...and yes, it would help if I got my aging bod in exercise mode; both for weight loss and stretching those oh so aging muscles/tendons!

As I have many looming deadlines at work in the next couple of weeks with many appellate briefs due, I wanted to go with the gang so we headed out to the new outdoor mall. Santa's workshop was in place already. Ice sculptures are out. My favorite was shopping with my mother in law at Coldwater Creek! Great sale, and as my dad used to say, I saved LOTS of money! I am finally realizing I might never fit back into my size 10. Sigh.

So, peeps, if you don't "see" me in the next few weeks, I am pounding away at the keyboard.........working weekends until Thanksgiving! I got Big Dawg and Nash tickets to the Notre Dame/Syracuse game Nov. 22nd, so Nash will have his first ND experience. I will have to miss it but know they will have fun. Then we are having a Thanksgiving blow out at our house; all of Jeff's family will be here; Nash's cousins, aunt Jodie and family, etc along with six dogs, whoo hee! Hopefully some on my side will come too.

Question to you all. Do you have family issues with the holidays ie have to have one side of the family over and have to attend a gathering for the "other" side too, or can everyone co-exist and celebrate together?

How do your Holidays work at your house?

Nash's Natter

2008-11-07T09:51:00.002-06:00

I came home yesterday, and Big Dawg was in the kitchen, Nash in the living room wrestling with Seger. I kiss my men hello, and give Seger a squeeze, and Nash whispers:

Mom, come here.
I have a secret.

I bend down, and he whispers in my ear.

Daddy just farted.

I look over at Big Dawg who grins sheepishly and replies "guess we better watch what we talk about now that we have a tattle tale"!

So what does a 2nd grader look like?

2008-11-06T08:45:00.004-06:00

Wanna help Parky?

2008-11-06T08:21:00.003-06:00

Our good pal Parker is going in for his second serious surgery for his "pull through". Tammy explains it better on her blog....I am thankful to not have to know all the medical terms, but Tammy is an expert!

So now, if you can, please stop by Parky's blog to leave a prayer for a good surgery, healthy healing and because of their horrible financial situation due to their insurance and hospital nightmare....

Please drop a donation for some disposable diapers and gas money would ya? Parky would thank you so very much! Go to Parkers Blog and click on the DONATE button on the right side.

hugs Tammy and Parker, and please keep us posted!

A thank you letter to Obama

2008-11-06T08:06:00.003-06:00

A thank you letter to share.

Dear President Elect Barack Obama:

I wanted to convey a heartfelt THANK YOU to President elect Obama for making an entire class of excluded citizens visible in his acceptance speech last night: people with disabilities. THANK YOU for including the word "disabled" in your acceptance speech last night.

I am a Deaf US citizen who also has attention deficit disorder and a mild foot problem. So I, too, am an American with disabilities. This is the first time I can recall feeling included in a political campaign as a person with disabilities.
Historically, people with disabilities have been pushed to the margins, confined to our homes or worse, to institutions. This was partly because of who we are and partly because people simply did not prioritize our inclusion, even when it would be simple to do so. Then, because we were not allowed to be in the mainstream of society, people didn't see us and thus assumed we do not exist. So the issues and concerns with the most profound impact on our lives, our most basic freedoms, and even our day to day survival have been historically assumed to not matter.
We are among the largest minority groups in this country the World Health Organization estimates we comprise about 10% of the population. Yet people don't see us in their streets, in their homes, in their offices, in the policies that they draft, in the programs they run, or in their lives. In American society, and around the world, we are consistently invisibilized. Most politicians, most of the time, don't even mention us the way Obama did last night. We are so consistently excluded that even tokenism would be a step forward for us.

I voted for Obama yesterday morning for many reasons. But one important motivation for me was that he was the only candidate to provide a truly comprehensive disability rights platform . It is particularly unique and impressive in that it is one of the few acknowledgments by a politician that disability issues are not confined to social protection programs, or to services for veterans disabled in war, or to education services for so-called 'special needs' children.

All of these are important concerns also, but Obama's platform is a rare recognition that people with disabilities are not a monolithic group. Social protection programs are not the start and end of our needs; we are not all veterans; and we are not all children. We are mothers and daughters, fathers and sons, brothers and sisters, friends and confidantes, co-workers and professional colleagues, spouses and partners, neighbors, and even professional and athletic rivals. We are everyone. And our needs are, correspondingly, as complex as the needs of everyone else.

Above all, as with any other marginalized minority group, our needs include the need for human rights protections. This makes it particularly noteworthy that Obama was the only candidate to pledge to sign the Convention on the Rights of Persons with Disabilities (CRPD) and encourage the Senate to ratify it.

Yet: when Obama referred to disabled (and non-disabled) people in his speech last night, I stopped breathing. Even with his disability platform in mind, I had not been prepared for this moment. Suddenly, one of the most overlooked group of Americans was acknowledged as a force in our own right. Suddenly, I felt visible.
I had to stop writing this letter twice because I kept stopping to weep. How powerful a thing it is, simply to be validated. Simply to have a president elect of the country acknowledge that we exist. How powerful a thing it is, to have a president elect of the country acknowledge us, not as a special class apart, but as a part of the mainstream of society. Exactly as we should be. Exactly where we belong.

Mr. Obama, you can expect more letters from me in the years to come. I am a person with many opinions and am not afraid to express them. In particular, I will be calling upon you to follow through on your pledge to sign the Convention on the Rights of Persons with Disabilities (CRPD). You can bet I will be calling you to account on your promises to Americans with disabilities!

But for now, just for today - thank you. Thank you for referring to Americans with disabilities in your acceptance speech on the evening of November 4, 2008. Just, thank youâ€“for acknowledging us and for including us. Thank you.

Sincerely,
Ms. Andrea Shettle, MSW

This is an open letter to Barack Obama. I am also sending it to the Barack Obama campaign via their web site. I hope other Deaf Americans, and Americans with disabilities in general, will join me in reaching out to Obama. Thank him for including us in his remarks last night. Remind him of his campaign promises to Americans with disabilities (Follow the link to download the 62 Kb PDF file, read it, and pick out an issue that speaks to you at your deepest level. Mention it in your letter.) Then thank him again for including us. Be sure to include the word 'disabilities' in both the subject line and in the first paragraph of your letter to ensure it catches the attention of staff devoted to disability-related issues. Follow this link to send an email to Obama via his website.

Even if you didnt vote for Obama yesterday he will be your president too. Democrats and Republicans may disagree with each other on a great many things, including who would have been a better president for Americans with disabilities. And regardless of political affiliation, we may also disagree on the most politically correct terminology for referring to ourselves. But I think we also have many concerns in common that are well worth crossing the ideological divide. No matter who we voted for, or what party we most commonly vote with, let's work together to ensure that we are increasingly included, and increasingly visible, in the mainstream of American politics and policies and public life. Let's work together to ensure that we are included in the mainstream of society, full stop. Send an email to Obama and let him know that Americans with disabilities are watching what he does.
If you're interested specifically in the CRPD - the first international, legally-binding human rights treaty to protect a wide range of human rights for people with disabilities around the world check out RatifyNow.org and consider joining them. Membership is free. Ratification of the CRPD is very much consistent with the Americans with Disabilities Act (ADA), with the bonus that it could help expand human rights protections into areas not currently covered in the ADA

It's a Historic Day!

2008-11-05T21:20:00.002-06:00

An amazing day, historic in content, and optomism flows....

Now, lets get on with bringing this country, and disability funding, up to where we heard it will go............and let's all support the effort, as one, United Nation.

Its a Big Day! Vote! and Case Conference in one day

2008-11-04T06:01:00.002-06:00

whew I am already tired!

Vote for Obama, so we can fully fund I.D.E.A.!

and prayers for a good case conference. Nash deserves it.

Happy Birthday Annette.....

2008-11-02T10:10:00.003-06:00

we miss you.

Halloween Eve

2008-10-30T19:49:00.012-05:00

Yes, I carved this puppy last year!

Today was a fun day! Nash is out on Fall Break, so I worked from home, got my brief hammered out, and went out to play.

Halloween is my second fav holiday next to Christmas. We usually go all out; dropping spiders on the porch, howling Halloween porch mat, Spider lights draped over the mantel and on the front porch. Well, those are all up again this year, and I added my annual "new" item; something gaudy and Halloween themed. This year it is a skeleton head coming up out of a trash can. Awesome, and half price!

Well the sad part of this year is that a major Halloween tradition is being broken; Big Dawg and Nash aren't doing their usual Halloween duo costume. Every year so far, except Nash's first Halloween, they have paired up. But Jeff is having minor surgery tomorrow, and will be flat-out on the couch during Halloween night. So their plans for Santa Clause and Jack Frost are bust. I started the Jack Frost costume, but after watching Spiderman this morning in bed (Jammie Day with me in the morning due to Fall Break!) he decided he wanted to be Spiderman. So off we went to buy a last minute costume. It seemed so, commercial. But Nash IS 7 now. So maybe I will have to relish in the past and reminisce with photos:

Here are the previous years:

October 2003 Nash was 2 Wags the Dog and Captain Feathersword

October 2004 Nash was 3 Donkey and Shrek

October 2005 Nash was 4 Eddie and Herman Munster

October 2006 Nash was 5 Scooby Doo and Shaggy

This is my fav next to Shrek/Donkey! Hagrid and Harry Potter!

So, tomorrow Nash goes off to play at our neighbor Wonderful Julie, and we will head to the hospital......... a different kind of scary

Greg Zoeller for Indiana Attorney General

2008-10-27T21:28:00.008-05:00

Nash endorses him! Here are some photos from this weekend. Yes we were at the McCain/Palin event for Kids with Special Needs. No Palin did not attend. and
YES Vote for Greg Zoeller!

He is Chief Deputy Attorney General for the State of Indiana, and therefore, my boss under Steve Carter. Zoeller is honest, refuses to promote the negativity up to the election in advertisement, and should be your choice for Indiana Attorney General if you are so lucky to reside in Indiana.

He plays a mean game of cornhole too, says Nash.

Here is how you play it Mr. Zoeller

Uh, I can help you with that throw if you want?