Friday, July 07, 2006

A great Letter to the Editor at Indy's Child!

**** As a side note I have removed last names from his letter for my post here on the blog***

Dear Editor,
My name is Darin. I have lived in Indianapolis for almost 2 years now and have enjoyed reading your publication. I appreciated the variety of activities that were presented along with the advertising that related to our family and my 2 young children. I also very much appreciated the article that sought to educate the public about children with Down Syndrome submitted by the Indiana Down Syndrome Foundation's executive director.
By this time I am confident that you have realized what a grave mistake it was to present the issue of prenatal testing in the unfortunate manner that you did. One of the children on that cover belongs to a man I consider to be one of my best friends. I also consider Nash to be my friend. I understand that you have received quite a number of letters by this time.
I would like to help you understand why that is and what it is you can do to turn this awful mistake into something positive.
7 years ago I was truly blessed with a son and his name is CJ. When CJ was born he had some medical complications. We were living in Goshen IN at the time about 3 hours north of Indy. They told us that our newborn would have to have surgery and needed to be sent to Riley in Indianapolis. This was my first born. My wife had to stay in the hospital and I had to follow my son in an ambulance for 3 hours to arrive at a hospital I had never been to before late at night. That was a difficult time. My son was put in NICU and I spent the night on a lazy-boy in a lounge and was woke up twice to sign papers. The next morning a young physician in residence came to me and said "Mr. Y----- I need you to sign some papers before we take your son into surgery". I read over the papers and first thing that was listed as a possible side effect was DEATH. I stood there and I thought...Then I went up to the man and said "if my son doesn't have this surgery is he going to die?" He said "yes". I said "then there really isn't much of a choice now is there?". I signed the paper and walked over to my son's bed...put my forefinger down by his little hand, and he grasped on to it. I had tears running down my face. Seeing this, the resident came over to me and said "Mr. Y----...there are some babies in this room that are going to die. Yours is not one of them. If he was I would tell you."
CJ came out of surgery just fine. While spending time in NICU they told us they had done some blood work to confirm it but he had indications of Down Syndrome.
He was moved over to a regular unit after a few days.
There was a head nurse there who looked over him. She would come up to his bed and say "'re tell your mommy and daddy, you say daddy, I'm beauuuuuuuuuuuutiful!" I can't tell you how much those words meant. Another woman from Riley named Anne from the Down Syndrome clinic told us something very important. She said "he is a baby first. He is not a Down Syndrome baby...he is a baby with Down Syndrome". She went on to tell us the sky was the limit for him. He could do what other kids do.
3 years went by and we had learned a lot about DS.
The phone rang on a Tuesday morning. It was an adoption agency. They said a little girl was going to be born with DS in about a month and wanted to know if we were interested in adopting her. We said that we were. The phone rang the following Thursday and the agency said "baby came early, mom picked you. When can you get here?" We brought our new bundle of joy home from the hospital the following Tuesday. Her name is Grace.
One time I had a colleague at work say to me "awh come couldn't tell me that if you could have had CJ with out DS you wouldn't have chose it." I thought and then I said "you know, Down Syndrome is part of who CJ is...if he didn't have DS he wouldn't be CJ.
So I can honestly say that I wouldn't have him any other way."
These children have opened area's in my life I didn't even know existed. They have gifts and talents to share with the world. I have gone places, met people, and done things beyond myself because of CJ. We moved to the Indianapolis area so that CJ and Gracie would be able to experience a better education and social life without the prejudice and discrimination that they were experiencing up north. What a disappointment to have a family publication that I appreciated insult my friends and family in this manner.
The group of people affected by this stretches way beyond Indianapolis...and way beyond our Down Syndrome extended family. This was a direct case of bringing pain to the disability community. I myself have Diabetes. I wonder if we live in a time that if people knew their child was going to have diabetes that they would choose to terminate the pregnancy early enough that no one would know. That would be unfortunate because I have lived a tremendous life.
In spite of having a learning disability I am currently attending graduate school to earn a masters in special education which I intend to dedicate to my son and daughter.
So where can we go from here? I think an apology is in order for the Down Syndrome community and especially those children and their families who were on the cover this month. Support for our annual fundraiser to help raise money and awareness would be a good gesture. And to help balance the scales a bit it wouldn't hurt to have a regular issue dedicated to the children of Indianapolis who happen to have a disability. My friends and I have a wonderful group of men called Dads Appreciating Down Syndrome. I'd like to invite anyone from Indy's Child to come and join us at one of our meetings and or events. I have a great picture of CJ and I at the annual DADS fishing outing that I'm attaching to this e mail. It's my favorite picture. While I'm at it I'll also attach a pic of Gracie and I at the DADS family camp out last year.
I trust that you as a publication will do the right thing here and celebrate our children with us. Not as something to be thrown away or discarded. But as valuable friends and neighbors that have a considerable contribution to make.
In all Sincerity

US Supreme Court, IDEA and kids with Disabilities


Take Action!

From the National Down Syndrome Society

July 7, 2006
On June 26, 2006, the U.S. Supreme Court issued a 6-3 decision in Arlington Central School District Board of Education v. Pearl Murphy and Theodore Murphy. The question the Court decided in Arlington v. Murphy was whether the Individuals with Disabilities Education Act (IDEA) authorizes parents who win an action (“prevail”) under the due process provisions of IDEA to recover fees they paid to experts during the case. Many parents find it necessary to hire private experts to observe and evaluate their child and then testify in an action challenging a school or district’s decision regarding their child’s IEP.
Justice Alito wrote the majority opinion and was joined by Chief Justice Roberts and Justices Scalia, Kennedy and Thomas. The majority opinion states that IDEA does not authorize the reimbursement of expert fees. Justice Ginsberg agreed with this result but wrote a concurring opinion because she disagreed with some of the other statements in the majority opinion. Justice Breyer wrote the dissenting opinion and was joined by Justices Souter and Stevens. The dissenting Justices argue that IDEA does authorize the reimbursement of these fees. The full text of Arlington v. Murphy can be found at
IDEA states that “in any action or proceeding brought under this section, the court, in its discretion, may award reasonable attorneys’ fees as part of the costs to the parents of a child with a disability who is the prevailing party.” The majority opinion rejects the argument that “costs” includes the reimbursement of expert fees. This conclusion is reached in spite of the fact that the 1986 Conference Report for IDEA clearly states that Congress intended the term “attorneys’ fees as part of the costs” to include reasonable expenses and fees of expert witnesses and the reasonable costs of any test or evaluation which is found to be necessary for the preparation of the case. According to the majority opinion, the intent of Congress is not the key issue in this case. Instead, the focus is on whether the language in IDEA gives clear notice to the states that by accepting IDEA funds they might be liable to reimburse prevailing parents for expert fees. The majority of the Court concludes that “the terms of the IDEA fail to provide the clear notice that would be needed to attach such a condition to a State’s receipt of IDEA funds”.
The Justices offering the dissenting opinion disagree with the rest of the Court’s decision to ignore the intent of Congress. They also argue that IDEA’s basic purpose further supports interpreting the provision’s language to include expert fees. IDEA guarantees a “free” and “appropriate” public education for “all” children with disabilities and the expense of paying experts to secure an appropriate education undermines this guarantee. Parents have the right to become involved in their child’s education and IDEA encourages their participation. The dissenting Justices point out that parents are assured by IDEA that they may question a school district’s decisions about what is “appropriate” for their child and in doing so, they may secure the help of experts. The dissent concludes that “the practical significance of the Act’s participatory rights and procedural protections may be seriously diminished if parents are unable to obtain reimbursement for the costs of their experts” and that experts are necessary because “the vast majority of parents whose children require the benefits and protections provided in the IDEA lack knowledge about the educational resources available to their child and the sophistication to mount an effective case against a district-proposed IEP.”The preceding quote in the dissenting opinion for the Murphy case comes from Justice Ginsberg’s dissenting opinion for the Shaffer v. Weast case in 2005. In a prior information bulletin we explained that Shaffer v. Weast places the burden of proof on the party (usually a parent) who is challenging the appropriateness of an IEP, unless there is a state statute placing the burden of proof on the district. The fact that most parents must now prove the inappropriateness of the district-proposed IEP, increases the need for experts.The combined effect of these two Supreme Court cases is to discourage parents from filing a due process complaint because of the economic impact on their families. NDSS encourages parents to try to resolve disagreements at the school and district level using non-adversarial forms of dispute resolution. However, sometimes parents end up having to choose between filing a complaint or forfeiting their child’s educational rights under IDEA.As a result of the Shaffer and Murphy cases it is more important than ever for parents to be well informed about their child’s rights, to develop effective advocacy strategies and to access the free and low cost resources that are available in their communities. The NDSS website ( and local NDSS affiliates are great sources of information and support. If you need help contacting an affiliate, call NDSS at 800-221-4602. In addition, every state has organizations that are funded to help parents, such as Parent Training and Information Centers (PTIs), Community Parent Resource Centers (CPRCs) and Protection and Advocacy agencies (P&A’s). A directory of PTIs and CPRCs can be found at A directory of P&As can be found at
If you have questions or comments about this bulletin, contact Ricki Sabia at If you or others you know would like to be added to the NDSS mailing list, send name(s) and email address to
National Down Syndrome Society666 Broadway, New York, NY 10012,Phone: 800-221-4602; Fax: 212-979-2873e-mail:; Web site:
Our mission is to benefit people with Down syndrome and their families through national leadership in education, research and advocacy.

Monday, July 03, 2006

If you want to run with the big dawgs you have to get off the damn porch!

I have always been one of those guys that wanted to do the manly things, play football, ride a harley, be cool, be tough and have a bit of a hard ass image. And all of that was true up until February 16, 2001 when the most amazing thing happened, my son Nash arrived and changed my life for good.

If you have read my blog or know me personally you know that many aspects of the BigDawg have changed over the years. If you are reading this you probably know that Nash has Down syndrome or Trisomy 21 and is the coolest dude I know and my best buddy.

Recently we had the opportunity for Nash to be on the cover of Indy's Child a parenting magazine here in Central Indiana along with some of our friends children and one of the mom's in our wonderful groups known as The Indiana Down Syndrome Foundation (IDSF) and Dads Appreciating Down Syndrome (DADS). Our group had purchased this opportunity at a fundraiser for another group earlier this year. Our Executive Director and the Magazine worked out the details and we believed that the issue was to be about summer fun. Why else would they have our kids pose in the pool at a cool waterpark located in our nicest Holiday Inn here in Indy.

Well Friday was a crazy day as I was trying to get out of the shop early and head home. As some of you may know I left the for profit world for the not for profit world a few years ago and am the CEO for a company that works with individuals with different abilities. Well one thing led to another and I got stuck selling one of our older vans to a church among things and finally left for my most important tasks of the day. I had to take care of two pieces of business. First I had to pick up our section of tickets to the upcoming Wiggles Concert here in Indy. I can assure you in my Harley riding beer drinking days I never thought I would spend and evening with Jeff, Anthony, Greg and Murray but this will be round two with the blokes from down under as Nash loves these guys. My second priority was to stop by our local grocery and pick up as many copies of Indy's Child as I could get as they just hit the stand and our Nash was on the cover.

Well got the tickets and slid into Marsh Supermarkets and quickly grabbed a huge stack and booggied to the car. Once inside I admired my son on the cover with a big smile and then my heart sank to my stomach. Right above our kids was a caption that read "Undertanding the results is key for prenatel screening tests". Without going further I knew I did not want to go home as my wife Jan had been on pins and needles waiting on this to hit the stands and knew she would be devestated. When I read the article it got worse. I am not going to go into all of that but if you want to know more about the article and see the pictures ect see Jan's blog at Mauzy's Musings link here on my blog. I would insert a link here but damned if I know how.

Bottom line it was all about finding out if you child has Down syndrome or not with out providing the least bit of positive information or resources. I was in shock.

Well the old me would have taken my old truck and loaded it with all the copies I could find and driven it right thru the front doors of Indy's Child for them to find when they returned to work. And who knows what else.

But an amazing thing happened thanks to being Nash's daddy. I knew I was mad and hurt that basically this magazine had made my son a poster child of for testing and decesions without information, but I also know that if you get off the porch to run with the big dawgs sometimes you are gonna get bit.

Well we had just been chomped on......and I knew the only thing I could do was try to turn this whole thing around. I had to keep in my mind that this was just a really dumb mistake and no one at the magazine connected the dots on what they had done. That they were not trying to do this on purpose. So I started making phone calls. Talked to some of the best people in the disability and down syndrome movement that I know. Jan went to work telling the world and I am sure that Indy's Child's web site has never had the traffic or letters to the editor that they have right now.

The next step will be to have a constructive discussion with the staff at Indy's Child and figure out how to right this wrong and I know that it can be done. I know that we just might be able to turn this situation into one of the most positive PR campaigns we have ever seen here in Indiana. At least I know that is my goal. I mean hey, they are about to find out what it feels like to run with the BIGDAWGS.

I am so proud of my son and I hope that someday he realizes how much of a difference he has made in his daddy's life.

I will hopefully update this situation soon.

Until then I hope you all get off the porch and step out of your comfort zone this week and do something positive you have been putting off. You might get bit but you will be a better person for it.

The BigDawg....AKA Nash's Daddy.