Contributing author to Gifts : Chapter 8


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gifts

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

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

2008 National Parenting Publications Awards (NAPPA): Gold Award

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

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Monday, December 05, 2011

Math, it no longer makes him "sweat"

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! 

video

Wednesday, November 09, 2011

Arc of Indiana's "Blueprint for Change"

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)

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

Thursday, August 18, 2011

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

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.....






Sunday, June 19, 2011

Happy Father's Day!

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




Sunday, May 15, 2011

Expectations

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.

Wednesday, April 27, 2011

Certain Proof: A Question of Worth - a feature documentary

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.....

Thursday, December 02, 2010

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

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 .