Have you taken the pledge?

Take the pledge.

I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.

Be gentle.

Toys R Us "gets it"

How many parents spend hours roaming through the rows of toys and games at Toys R Us wondering which toy might be "the toy" for your child?  What if your child is differently abled?  How do you choose a toy appropriate for your child?  Toys R Us has created a guide to assist parents and care givers choose toys and games to help their child grow.  I love this that this catalogue shows real kids with disabilities as models in the catalog.  Toys R Us, you rock.

This week, fans of Eva Longoria and consumers will see her appear alongside her newest co-star, Elijah De La Cerda, a 5-year-old boy with Down syndrome from Fresno, CA, on the cover of the Toys“R”Us Toy Guide for Differently-Abled Kids. This complimentary toy-selection resource for parents and caregivers of children with special needs is now available in Toys“R”Us and Babies“R”Us stores nationwide. A digital version of the Guide is also available online at Toysrus.com/DifferentlyAbled in English and Spanish.

Ongoing Support for the Special Needs Community

Toys"R"Us and the Toys"R"Us Children's Fund together are extremely proud of their ongoing support of organizations that advocate for children with special needs. Grant recipients for 2011 include the following leading national organizations.

American Society for Deaf Children - www.deafchildren.org

The American Society for Deaf Children supports and educates families of deaf and hard-of-hearing children and advocates for high quality programs and services.

Autism Speaks - www.autismspeaks.org

Autism Speaks is North America's largest autism science and advocacy organization. Founded in February 2005 by Suzanne and Bob Wright, Autism Speaks is dedicated to funding global biomedical research into the causes, prevention, treatments and cure for autism; to raising public awareness about autism and its effects on individuals, families and society; and to bringing hope to all who deal with the hardships of this disorder.

Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) -www.chadd.org

Founded in 1987, CHADD provides education, advocacy and support for individuals with Attention-Deficit/Hyperactivity Disorder.

Muscular Dystrophy Association - www.mda.org

MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.

National Down Syndrome Society - www.ndss.org

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

National Organization of Parents of Blind Children - www.nfb.org/NOPBC

The National Organization of Parents of Blind Children is made up of families, teachers, and friends of blind children reaching out to each other to offer vital support, encouragement, and information. Through seminars, training, advocacy, a national magazine, and a positive attitude toward blindness and the abilities of blind people, NOPBC fulfills its mission to create a climate of opportunity for blind children at home, in school, and in the community.

Special Olympics - www.specialolympics.org

Special Olympics is an international movement dedicated to empowering individuals with intellectual disabilities through sport, thereby creating communities of joy, acceptance and dignity.

Spina Bifida Association - www.spinabifidaassociation.org

The Spina Bifida Association is the nation's only national voluntary health agency dedicated to serving the needs of the more than three quarters of a million people who comprise the Spina Bifida Community. The Spina Bifida Association serves its community through education, research, services and advocacy.

United Cerebral Palsy - www.ucp.org

United Cerebral Palsy (UCP) works to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities through its international affiliate network. Founded in 1949, today UCP is one of the nation's leading organizations serving and advocating for the more than 54 million Americans with disabilities.

2010
Holly Robinson Peete
Actress, Author
and Philanthropist

2009
Whoopi Goldberg
Comedian/Host of The View

2008
Meredith Vieira
Host of Who Wants to be a Millionaire

2007
Maria Shriver
Author and First Lady of California

2004
Dionne Quan
Voice of Kimi
on the Rugrats

2003
John Ritter
Actor

2002
Mattie J.T. Stepanek
Poet/Author/2002 Muscular Dystrophy
Association Goodwill Ambassador

2001
Maria Shriver
Author and First Lady of California

2000
Chris Burke
Actor, Spokesperson for the National Down Syndrome Society

1999
Doug Flutie
Buffalo Bills Quarterback

1998
Marlee Matlin
Actress

1996
Heather Whitestone
1995 Miss America

1995
Jim Abbott
Major Leagur Pitcher

No Irene on the West Coast, but.............

Why does it seem like a hurricane rumbled it's way through the boys bedrooms every day?  Or maybe a bomb goes off?  Or a gremlin decided to throw everything throughout the their rooms?  And Davey and Will not even notice?

Time to break out the clean-up song.  Clean up, clean up, everybody everywhere.  Clean up, clean up everybody do their share.

At least the Legos stay in one spot.

Oblivious to the mess

In the middle of clean up time

What mess?

Be gentle.

Haircut smile

Back to school haircut time

Be gentle.

One of the things that make me happy. LOL!

Clean carpets!!!  I love Costco.  David and I found a wonderful carpet cleaner at Costco yesterday and have started putting it to work.  With the kids and dogs in the house all the time, our carpet takes a beating.  No matter how careful we are, rules about no food on the carpet, vacuuming often, our carpets take a beating.   I am SO excited to clean carpets.  I can't believe I am saying that.  But, I love a clean house.

Working, working, working

Look at that dirty water.  Yucky.

My hero!

Ahhh.  Clean carpet.

David did finally let me take a turn with our new toy.  Honest.

  Be gentle.

Inclusion in school? Is it for my child?

Last night was "Back to School Night" for the boys.  When the boys were five, I remember having to make some tough decisions about how we wanted to proceed with Davey's education.  We had so many decisions to make.  What about inclusion?  Is it where Davey belonged?  What were the important factors we were looking for in Davey's education?  I was concerned that we wouldn't make the right choices for Davey.  So many of the parents I had met felt that that fully including their child in school was the most important thing for their child.  Did we want to mainstream our son?  David and I were not so sure this was the right place for Davey.  Did we want Davey in a "typical" classroom?  Should he be in a "typical" classroom with an aide or "para"?  Should he be a in a classroom geared toward his learning style?  What about full inclusion?  Is it for my son?

Inclusion in education is an approach to educating students with special educational needs. Under the inclusion model, students with special needs spend most or all of their time with non-disabled students. Implementation of these practices varies. Schools most frequently use them for selected students with mild to severe special needs.^[1]

Inclusive education differs from previously held notions of ‘integration’ and ‘mainstreaming’, which tended to be concerned principally with disability and ‘special educational needs’ and implied learners changing or becoming ‘ready for’ or deserving of accommodation by the mainstream. By contrast, inclusion is about the child’s right to participate and the school’s duty to accept the child. Inclusion rejects the use of special schools or classrooms to separate students with disabilities from students without disabilities. A premium is placed upon full participation by students with disabilities and upon respect for their social, civil, and educational rights.

Although I do not like to compare our twins, I do notice differences in the learning styles of the boys.  Was it fair to Davey to place him in a typical classroom?  No, David and I did not think so.  We felt it was better for Davey to be the classroom that would best fit his learning style.  He is allowed to learn at his own pace. He is reading, writing, doing math, science, history at his pace.  BUT, he is also included with the typical kids at school.  He spends time daily in a "typical" classroom.  He attends music, PE, computers, library, field trips with all of his same age peers.

Is there a right or wrong answer to this question?  I do not think so.  I want the best education possible for my son.

Be gentle.

Up Syndrome

Check out this video I saw on You Tube called Up Syndrome about a young man, Rene Moreno in Texas.  I wasn't quite sure what to think when I first started watching it, but realized that Rene is quite entertaining and has a happy, typical life with his friends and family.  Rene is on Facebook.  And his video about his life is available for purchase too.  Give it a peak and let me know your thoughts.

Be gentle.

Smile break

I have been in Vancouver BC for the last couple of days for work.  I found this fun.  A Coke Zero can in English and French.

Be gentle.

First Day of School.... aka The most wonderful day of the year

Summer vacation has screeched to a halt.  School started yesterday.  The boys are happy and enjoying the new school year.

Friends

Be gentle.

Deselecting?

I support prenatal testing.  Informed parents make better parents.  But the use of prenatal testing can test the ethics of many.  Is the quest for a "perfect" baby what we really want?

My perfect boys

Perfect!

Here’s a recent Danish headline: “Plans to make Denmark a Down syndrome-free perfect society.” The Danes want to promote aborting fetuses with Down syndrome, so their society will be free of such people around 2030. One bioethicist describes it as a “fantastic achievement.”

At least the Danes are raising this issue. In North America, it’s estimated that more than 90 per cent of unborn babies with Down syndrome are aborted.

The ethics issues that prenatal screening raises will only increase as the range of tests expands, they’re safer for the woman, cheaper, easier to use and presented as routine medical precautions. But not all tests have medical goals. The latest – identification of a baby’s gender at seven weeks of pregnancy – raises fears of sex selection, which has resulted in millions of missing girls in India and China. These “deselection” decisions affect society itself. Many young men, for instance, can’t find a wife.

The British riots provide insight regarding actions by individuals that cumulatively threaten society: Unlawful assembly and rioting are such crimes. The same can be true of individuals “choosing” their children. So what limits should we place on their doing so in the interests of society?

Widespread, publicly endorsed and paid for prenatal screening to eliminate people with Down syndrome implicates values of respect for both individual human life and human life in general, and respect for disabled people. Collectively, these decisions implement negative eugenics regarding disabled people. It’s a “search and destroy” mission to wipe them out.

What kind of society might result from endorsing a belief that a society without disabled people is “perfect?” The use of science in the search for human perfection has been at the root of some of the greatest atrocities.

Offering routine prenatal screening sends a message that a woman is conditionally pregnant, until she’s told there’s “nothing wrong” with the baby – the fetus is certified as “normal” – or, even, is the “right sex.” This contravenes the value that parental love is unconditional – we love our children just because they’re our children.

A societal-level message is: “We don’t want you in our society unless you measure up to a certain standard. You’re only a potential member, until you’ve passed the admission test we’ll pay for with our tax dollars.”

And what about the “everyday ethics” of screening? Many physicians are not competent to obtain informed consent to all prenatal tests and carry out follow-up genetic counselling. Physicians also tend to be very pessimistic in predicting the impact, for instance, of Down syndrome on the child, and usually see no possible benefits from having such a child.

People who could inform them otherwise are often silenced. Audrey Cole, the mother of a 47-year-old man with Down syndrome, writes: “Our voice will, inevitably, be dismissed as the whinings of a ‘special interest’ group. I have never been able to understand why my feelings as a parent of a wonderful, caring, gentle man can be so easily dismissed as ‘special interest.’ I am frightened of the times that seem to be coming.”

And how will women who refuse screening be regarded? Will families who “choose” not to abort when “abnormalities” are discovered be seen as socially irresponsible?

In deciding about the ethics of prenatal screening, we should recall that, for all of us, “the well are only the undiagnosed sick.”

Margaret Somerville is the founding director of the Centre for Medicine, Ethics and Law at McGill University.

Be gentle.

Down Syndrome age related diseases

This topic is thought provoking.  I want to assist my children in being healthy.  We need  to support research that will keep our children (and others) healthy.  How do we make sure that this type of research is continued?  How do we make sure that parents and physicians have the latest research and discoveries to keep our children healthy?  What do we as parents and advocates need to do?

UK doctors study link between Down syndrome and Alzheimer's

By Dr. Elizabeth Headand Dr. Frederick Schmitt — Special to The Herald-Leader

Posted: 12:00am on Aug 21, 2011; Modified: 1:47am on Aug 21, 2011

Individuals with Down syndrome are living longer than ever, and they face increased risks of age-related conditions such as Alzheimer's disease. In fact, due to an extra copy of a chromosome, people with Down syndrome produce extra Alzheimer's-linked proteins in their brains.

Like all people with Alzheimer's disease, people with Down syndrome develop plaques and tangles in their brains, but they do so at a younger age than people who don't have Down syndrome.

Research has shown that virtually all individuals with Down syndrome have Alzheimer's-like changes in their brains by age 40, although they might not develop dementia until age 50 or later.

During this approximately 10-year period, although the brain appears to have protein changes consistent with dementia, individuals continue to function at their usual levels.

This same thing occurs in the general population, as many participants in the UK Sanders-Brown Center on Aging brain donation program come to autopsy with full-blown Alzheimer's pathology in their brains but no record of clinical dementia symptoms during life.

Working to understand how the brains of individuals with Down syndrome adapt to aging might hold keys to unraveling the mysteries of Alzheimer's disease. If we as investigators learn how people can continue to function normally while their brains develop physical manifestations of Alzheimer's, we might be one step closer to heading off dementia in millions of people.

Because the brain aging process is in many ways accelerated in people with Down syndrome, working with these individuals is an ideal way to study how we can prolong normal brain function for individuals with Down syndrome and the general population.

To this end, we are conducting a research study involving participants 35 and older who have Down syndrome. The study is funded by the National Institute of Child Health and Human Development. Participants are asked to come to the University of Kentucky every six months throughout the five-year study to give a blood sample, take thinking and memory tests, have a neurological exam, and undergo a MRI brain scan.

Our goal is to recruit and study 40 adults with Down syndrome who do not have signs of dementia, and 10 to 12 adults with Down syndrome who have been diagnosed with dementia. Those who already have dementia will come to UK only once.

While adults with Down syndrome are predisposed to Alzheimer's disease, there is hope. We are learning much from their experiences and hope that our research will result in knowledge that can improve the quality of life for individuals with Down syndrome and their families, and for those with Alzheimer's and related dementia.

For more information, go to Uky.edu/dsaging or call Roberta Davis at(859) 257-1412, Ext. 479.

Dr. Elizabeth Head and Dr. Frederick Schmitt are with the University of Kentucky Sanders-Brown Center on Aging.

Read more: http://www.kentucky.com/2011/08/21/1852346/uk-doctors-study-link-between.html#ixzz1Vg9sk5Au


Be gentle.

For your viewing pleasure

Two of my guys.  David and David with the bears.

Guess which is which?

Be gentle.

Friday smile

Jack

Jack, Amy's goofy, loving, fun loving Boxer is now an AKC Champion.  He has got to be the one of the silliest pups I have ever met.  I think Jack's goal in life is to just have fun.  Amy and Jack were visiting a few weeks ago and I got this video of Jack playing in the front yard.

Get ready for your Friday smile.

Be gentle.

NDSS Buddy Walk Times Square Video 2010. Beautiful people.

Beautiful people

Get ready to see some more beautiful people.  Click on the link below.  Sit back and enjoy.


NDSS Times Square Video 2010

Be gentle.

Prenatal testing or ?

With all of the advances in prenatal testing, a dilemma develops in my opinion.  This technology improves the lives of our unborn children.  But at what point is this testing used to "terminate sick babies"?  Does a girl child get classified as sick because of her sex?  Unborn children with DS fall into this category all the time.  Here is an article from the Huffington Post.  What are your thoughts?

Are We Ready to Embrace Prenatal Blood Tests?

Posted: 8/16/11 12:44 PM ET

It's a tantalizing technology for a pregnant woman: a few weeks after a missed period, before anyone else knows she's pregnant, she goes to a lab, has her blood drawn and learns whether her fetus is a boy or a girl, has Down syndrome or another genetic abnormality, and even learns about its blood type.

In the field of prenatal diagnosis this has become a holy grail of sorts, with researchers chasing a reliable test, and diagnostics companies lapping at their heels to bring the tests to market and reap the financial rewards.

So when over 650 news reports covered the August 10thpublication in the Journal of the American Medical Association by Dr. Diana Bianchi and colleagues, one might have thought the research team was describing a novel breakthrough. But they weren't: Instead, they meticulously cobbled together hundreds of small studies by other researchers and demonstrated convincingly that when performed appropriately, beginning three weeks after she misses her period, a woman can count on the results from a blood test to tell her whether she will have a boy or a girl.

Why all the hubbub about an article summarizing old research?

I think that the reason is that after fits and starts, delays and controversies, a world-renowned researcher has published an article in a world-renowned medical journal giving this technology two thumbs up. Dr. Bianchi leads the Mother Infant Research Institute (MIRI) at Tufts Medical Center in Boston, and is a leading investigator in this field. (Full disclosure: I too am a MIRI researcher at Tufts.)

"Not only did the analysis demonstrate a surprisingly consistent performance over a 14 year period, it showed that some European countries were already using this test clinically to manage pregnancies at risk for certain genetic conditions," Bianchi told me.

My prediction is that this publication will be a catalyst for the acceptance of future non-invasive prenatal diagnosis tests -- from Down syndrome to cystic fibrosis and a host of other tests that are still under development.

To understand why this is a big deal, a bit of background is in order:

Information about the fetus' gender can be critically important: Some genetic abnormalities of the X-chromosome -- like hemophilia or Duchenne muscular dystrophy -- typically affect only boys, and another condition that causes ambiguous genitalia among other problems, called Congenital Adrenal Hyperplasia, can be successfully treated in-utero if the gender is known.

Also, parents like to know what gender to expect. (This can lead to sticky ethical issues when the information is used for gender selection, but that topic has been well covered elsewhere so I'll leave it alone.)

The gender test, along with the test for Down syndrome and other chromosomal problems, offers the potential to get a diagnosis early in pregnancy without the need for an invasive procedure -- a chorionic villus sampling or an amniocentesis -- that can cause miscarriage.

Since 1997, when scientists first reported that they could isolate fetal nucleic acids -- the stuff our genes are made from -- in maternal blood, the chase has been on for reliable fetal diagnostic tests.

But 14 years later, only one test has made it into the mainstream -- the non-invasive test for fetal blood Rh status, launched by Sequenom last year. For the 12 percent of pregnant women in the United States who have Rh-negative blood type -- and particularly for the small fraction of these women who make antibodies that can attack their fetus' blood if it's Rh-positive -- this test is a godsend.

The gender test has remained in the periphery, available only online through largely unregulated companies. One company went bankrupt after being sued by a host of women who painted their nurseroes the wrong color. Regulations that would bring the test into the mainstream have not been written, and as a consequence, insurance companies do not cover the approximately $250 cost of the test.

Worse yet is the saga surrounding the test for Down syndrome, which was due to be released by Sequenom until it turned out the company had cooked their data. The fraud delayed the test's release by years.

Understandably, after delays, fraud and internet sideshows, clinicians, scientists -- and even patients -- are a little jaded.

To see an article in a top journal that reads like an endorsement of the technology will do a lot to reinvigorate non-invasive prenatal diagnosis -- perhaps the most important advance in that field in decades.

 

Follow Adam Wolfberg, M.D. on Twitter: www.twitter.com/AdamWolfberg