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Mauzy's Musings

A Place for Mauzy to Muse

Updated: 2017-07-01T02:36:43.822-05:00


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! 
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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)

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....


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.....

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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...



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


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


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 .

Mom's Memorial


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


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


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.

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


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.

Take chances.
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.
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!


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!


Contact Jeff Huffman
President- Down Syndrome Indiana

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


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.

Happy Mother's Day!


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!


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.

Happy World Down syndrome Day!


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!

Parker could use your prayers


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


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


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”.


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.....


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

Student with Down syndrome inducted into National Honor Society


Well Done Sarah, Well Done.______________________________________Rising to the occasion again: Student with Down syndrome inducted into National Honor Society at Blue Valley NorthBy GRACE HOBSONThe Kansas City StarSarah 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 re[...]

Beautiful October day in Indiana


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



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!


The 2009 DSI Buddy Walk is Saturday, October 10th, 2009 Celebration Plaza, White River State Park - Downtown IndianapolisJoin 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 NASHYou 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![...]