Monday, November 29, 2010

Why eliminating the word retarded is not enough

I wrote a piece in MercatorNet about why eliminating the R-word will not bring about the changes in society which Down syndrome advocates have long sought, and another piece, Count Me In,  in which I describe my odyssey searching for inclusive education for my daughter Christina.

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Sunday, November 28, 2010

Jackie Evancho sings Ave Maria

Pure perfection and angelic innocence. May you always use your talent for God's glory, young lady!

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Wednesday, November 24, 2010

Happy Thanksgiving

This year I am grateful for the additions to our family, my teenage brother and sister-in-law, Manuel and Milagro, Irina, an 18-year-old family friend who came to live with us, and my father who is on his way up from Long Island. The kitchen is merry with girls cooking our traditional Thanksgiving feast, the house is spotless and fragrant, and our spirits are high. We are taking out the good china, and linen, putting logs in the fireplace, and preparing for a fun weekend. Life is good.
I don't know what the future holds, there are rumblings on the horizon which threaten to make this year one which we will look back upon fondly. Maybe things won't be so prosperous next year, maybe some family members will be missing or in poor health.
So, its especially important to count our blessings and give thanks to Almighty God for those who surround us, our prosperity, and for our safe, free nation.

Tuesday, November 23, 2010

I saw "Voyage of the Dawn Treader" last night

And I can't tell you a thing about it. Not until the film opens on December 10.
Except this; make plans to see it with your entire family.
Its not to be missed.

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Friday, November 19, 2010

My friend Monica and her fist IEP

Christina just had her PPT for second grade,  and I haven't written it up for you here, as I was waiting for the paperwork to remember the details, however, Monica over at Monkey Musings, has done an outstanding job preparing, executing, and reporting on her son John Michael's first IEP at age 3 and  I wanted you to see what a well prepared mother does for her first planning meeting for her son in a classroom setting.

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Rep Cathy McMorris Rogers on IDEA

Dear Friend, 

I just wanted to let you know that yesterday, the U.S. House passed a resolution I co-sponsored, H. Con. Res. 329, Recognizing the 35th anniversary of the enactment of theEducation for All Handicapped Children Act of 1975.

As the mom of a child with special needs, I am a strong supporter of this bill, which in 2004 was re-authorized and renamed the Individuals with Disabilities Education Act (IDEA).  In 1975, 1 out of 5 children with disabilities were educated in our public school system. Moreover, many states had laws that explicitly excluded children with certain types of disabilities from attending public school, including children who were blind, deaf, and children labeled "emotionally disturbed" or "mentally retarded." Many of these children lived at state institutions where they received limited or no educational or rehabilitation services.  Another 3.5 million children attended school but were kept in segregated facilities and received little or no effective instruction.  Thankfully – because of IDEA – there are nearly 6 million children in the U.S. who are receiving special education services today.

I am pleased that by passing this resolution, Congress has renewed its commitment to IDEA, although going forward, it needs to receive full federal funding, as promised.  This will ensure that special ed students are developing their skills to their fullest potential.  I will continue to work hard in Congress to make sure it happens.

To read the full Resolution, please see below.  Thank you so much for your interest in this issue. 

Warm regards,



Recognizing the 35th anniversary of the enactment of the Education for All Handicapped Children Act of 1975.

Whereas the Education for All Handicapped Children Act of 1975 (Public Law 94-142), which amended the State grant program under part B of the Education of the Handicapped Act (Public Law 91-230), was enacted into law 35 years ago on November 29, 1975; 

Whereas the Education for All Handicapped Children Act of 1975 established the Federal policy of ensuring that all children, regardless of the nature or severity of their disability, have available to them a free appropriate public education in the least restrictive environment

Whereas the Education of the Handicapped Act of 1975 was further amended by the Education of the Handicapped Act Amendments of 1986 (Public Law 99-457) to create a preschool grant program for children with disabilities 3 to 5 years of age and an early intervention program for infants and toddlers with disabilities from birth through age 2; 

Whereas the Education of the Handicapped Act Amendments of 1990 (Public Law 101-476) renamed the statute as the Individuals with Disabilities Education Act (IDEA); 

Whereas the IDEA was amended in 1997 to ensure children with disabilities are involved, and make progress, in the general education curriculum and are included in all general State and district-wide assessment programs; 

Whereas IDEA was amended in 2004 to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and support them in transitioning to further education, employment, and independent living

Whereas IDEA currently serves an estimated 342,000 infants and toddlers, 709,000 preschoolers, and 5,890,000 children 6 to 21 years of age; 

Whereas IDEA has assisted in a dramatic reduction in the number of children withdevelopmental disabilities who must live in State institutions that are away from their families, costly, inappropriate, and isolated; 

Whereas the number of children with disabilities who complete high school with a standard diploma has grown significantly since the enactment of IDEA; 

Whereas the number of children with disabilities who enroll in college as freshmen has more than tripled since the enactment of IDEA; 

Whereas IDEA has raised the Nation's expectations about the abilities of children with disabilities by requiring access to the general education curriculum; 

Whereas improvements to IDEA made in 1997 and 2004 changed the focus of a child'sindividualized education program from procedural requirements placed upon teachers and related services personnel to educational results for that child, thus improving academic achievement; 

Whereas IDEA, along with the Elementary and Secondary Education Act of 1965, holds schools accountable for the academic performance of students with disabilities

Whereas IDEA requires full partnership between parents of children with disabilities and education professionals in the design and implementation of the educational services provided to children with disabilities; 

Whereas IDEA has supported the classrooms of this Nation by providing Federal resources to the States and local schools to help meet their obligation to educate all children with disabilities; 

Whereas while the Federal Government has not yet met its commitment to fund part B of IDEA at 40 percent of the average per pupil expenditure, it has made significant increases in part B funding by increasing the appropriation by 81 percent since 2001, which is an increase of over $5,160,000,000; 

Whereas IDEA has supported, through its discretionary programs, more than 4 decades of research, demonstration, and training in effective practices for educating and assessing children with disabilities, enabling teachers, related services personnel, and administrators to effectively meet the instructional and assessment needs of children with disabilities of all ages; 

Whereas the challenges associated with providing a free appropriate public education to every child with a disability continue despite 35 years of IDEA implementation, including low expectations and an insufficient focus on applying replicable research on proven methods of teaching and learning for children with disabilities, requiring a continued commitment to improvement; and 

Whereas IDEA continues to serve as the framework to marshal the resources of this Nation to implement the promise of full participation in society of children with disabilities: Now, therefore, be it 

Resolved by the House of Representatives (the Senate concurring), That the Congress--
(1) recognizes the 35th anniversary of the enactment of the Education for All Handicapped Children Act of 1975 (Public Law 94-142);
(2) acknowledges the many and varied contributions of children with disabilities and their parents, teachers, related services personnel, and administrators; and
(3) reaffirms its support for the Individuals with Disabilities Education Act (20 U.S.C. 1400 et seq.) so that all children with disabilities have--
(A) access to a free appropriate public education; and
(B) an equal opportunity to benefit from the general education curriculum and be prepared for further education, employment, and independent living.

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Genetic Counselors have far more negative view of Down syndrome than parents

This is a 1990 study done at Dartmouth Medical School  on attitudes toward those with Down syndrome. Source; The American Journal of the Disabled Child. 
It disproves what national Down syndrome organizations have said about the attitude of genetic counselors when they counsel parents expecting a child with Down syndrome. In "Toward Concurrence" the NDSS, NDSC, ACOG , American Society of Medical Genetics and the National Society of Genetic Counselors, all deny that genetic counselors attitudes are overwhelmingly negative about carrying a baby with Down syndrome to term.

 However, the stats below show that genetic counselors do not have any familiarity with real families with a child with Down syndrome and their attitudes, and slightly less than half believe the benefits outweigh the negative aspects of raising a child with Ds. Their attitudes vary widely from nurses who are more positive and even more from parents. Perhaps the nurses have more contact with patients, the genetic counselors tend to be in the office more than out with patients. 

 Am J Dis Child. 1990 Oct;144(10):1112-6. My comments in red. 

Reactions of mothers and medical professionals to a film about Down syndrome.

Department of Maternal and Child Health, Dartmouth Medical School, Hanover, NH 03756.

"Parents, genetic counselors, and nurses were shown an 18-minute video-taped discussion involving parents of persons with Down syndrome and were asked to complete an evaluation. 

Some of the statistically significant differences were as follows: 

89% of mothers believed that the film was an accurate portrayal of parental attitudes compared with 14% of the genetic counselors and 40% of the nurses; shows you who believes parents.

48% of genetic counselors believed that problems outweigh the benefits in parenting a child with Down syndrome, but 94% of mothers and 83% of nurses thought that the benefits predominated; Why don't the genetic counselors ask mothers for their opinons, they obviously make judgments with NO basis in reality. 

 56% of genetic counselors believed that parents of a child with Down syndrome would choose to abort a subsequent affected fetus while only 8% of parents and 10% of nurses agreed. Again, the disconnect between those who give out advice to parents after a prenatal diagnosis, and those in the trenches of raising a child with Ds. 

It is important that medical professionals have a balanced and accurate view of the impact of Down syndrome on families."

Talk about the greatest understatement of the last two decades! Yet, until the past five years when parents became active advocating for their children, no significant changes in this disparity between the opinions of medical professionals and parents were affected. 
We have a lot of work to do, but the burning question remains, do genetic counselors have open minds? Are they willing to let non-professionals, parents and their children, educate them on living with Down syndrome?

Read the entire study here. 
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Monday, November 15, 2010

Mayberry moments

Sunday afternoon in Mayberry. Barney and Andy are sitting on the front porch. Andy is strumming the guitar and Barney is trying to get up the ambition to "buy a bottle of pop and go down to Thelma Lou's". The city guy with them can't take the pace, and shouts at them get going, drawing stunned looks from both. This is Sunday in a small town when it was still a day of rest, according to Rascal Flatts.  I love Sundays.

That's one of the blessings I shared on  "Faith and Culture" about raising a child like Christina, she helps you slow down and life live fully When you go for a walk in the woods, there is. no speed walking. With her, a stroll down to the creek is just that; a stroll. You notice birds, and the corn stubble in the field. You stop to feel the breeze, and watch a deer fleeing into the woods.
And you have to stop at the water. She loves water. On Long Island, it was Hart's Cove. Here is is the brook across the cornfield.
When we arrive at the water,  she sits in her spot, and throws enough stones to make the water rise a bit.

She watches Molly get muddy after her bath yesterday, and admires Daddy's ability to skip stones.
Did I mention that
Daddy is her hero?

Did I have to?

 She enjoys the sun on her face, a piggyback ride home and a stop at our Holy Family Shrine to thank God for a true day of rest.

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Wednesday, November 10, 2010

UA Research Team Develops New Cognitive Tests

St Leo the Great counsels his flock

I have just received my copy of "Demonic Abortion" the companion to the book "Exorcism and the Church Militant" by Fr Tom Euteneuer, formerly of Human Life International. He is now back in a parish in West Palm Beach, by his bishop's order. I will review both books even though they are soon going out of print, because the truth they reveal is vitally important for the Church, as is St Leo the Great's message below.

Here is a meditation from St Leo the Great a pope from the fifth century, taken from my Magnificat Magazine,

" Even though the Lord protects warriors and he who is "might in battle" encourages his own soldiers, saying, "don not be afraid, because I have overcome the world". still we should know, dearly beloved, that even with this incentive the fear is lifted, not the struggle.
After the sharp point of terror has been made dull, the cause of the struggle remains, a struggle which is stirred up terribly by the crafty enemy in the fury of persecution, but brought all the more harmfully by the appearance of peace.
When the battles are out in the open, the crowns are also evident. This, too, nourishes and inflames the strength of patience,that, when disaster is nearest, the promise is also at hand. After the public attacks of the wicked ones cease and the devil restrains himself from the slaughter and torture of the faithful, lest by the intensity of his cruelties,  there be a manifold increase of our triumphs, the raging adversary turns his blood thirsty hatred to quiet treachery, and those he could not overcome with hunger and cold, with sword and fire, he will wear out with an easy life. he will snare with willfulness, inflame with ambition, and corrupt with luxury.
The Christian battle line, when the Spirit of Truth draws up his own soldiers, has powerful defenses and invincible arms for destroying these and all others, as long as gentleness, abolishes anger, generosity abolishes greed,  and kindness abolishes envy. 
Restraint has subdued luxury, humility has cast out arrogance, ad those who were solied     in shame now shine in purity."

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Autism gene found; will abortion follow?

A new marker has been found which indicates the possibility of autism and other impairments in an unborn baby. Will they soon be targeted for destruction like our children with Down syndrome children? Kurt Kondrich, author of "Making a Case for Life" asks this important question in his Renew America article.
The "risk gene" is identified as CNTNAP2, and according to the article "About one-third of all people carry the variant of the CNTNAP2 gene that is associated with a heightened risk of autism, as well as attention-deficit/hyperactivity disorder, Tourette syndrome, schizophrenia and other language difficulties." As I read this latest genetic update I noticed that the phrase "risk gene" was mentioned no fewer than 7 times.
Since 90%+ of all children diagnosed prenatally with Down syndrome using genetic testing are aborted my question to the researchers and medical community would be "What will the identification of this "risk gene" be used for, and will this prenatal diagnosis be offered to expectant parent?"

We hope not, but experience has taught us that those who view a perfect child as an entitlement will use this marker as a means to weed out imperfect children, decimating the Autim population. This has been the research goal of Autism Speaks, a well funded Autism organization.Look at this site; The Autism Genocide Clock, which estimates that in 4 years those with Autism will be targeted like our kids with Down syndrome are.
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Monday, November 8, 2010

Kathy Ireland speaks up for Down syndrome research

Kudos to pro-life Kathy Ireland for calling attention to the fact that Down syndrome research is severely underfunded when compared to autism.
She said, after her niece Polly was born with Down syndrome. and she attended a World Down Syndrome Congress in Washington.

When I watch the Special Olympics, it's a richer experience than any other competition. You are cheering for each and every competitor. Isn't that a beautiful experience? Each one carries the flag of our greatest common denominator -- our humanity. 
Every person with Down syndrome in those races is giving it his or her all. So why are we running out on them? You and I can't slow down in our national effort to help them. We are in a race to help those with DS. We must run side by side with them, assuring them that the Down syndrome funding cuts, which the National Institutes of Health has faced, are reversed now. 

Read the entire article here.

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Holy Angels Respect Life Conference

I gave a talk entitled, "Winning the War for Hearts and Minds of Youth" to encourage pro-life leaders to evangelize the youth in their parishes with the Gospel of Life. It was well attended, and there were many good questions. Afterward I enjoyed a talk given by Fr Brian Mullady, OP of EWTN fame, who gave a good explanation of Pope John Paul II Theology of the Body. the other keynote address was by Dr Marie Hilliard
of the National Catholic Bioethics Center (in the photo with me).
Dr Hilliard spoke about ethical challenges in health care. The most devastating challenge she described is the Groningen Protocol. According to Life Site News it is, "The protocol - the full name of which is The Groningen Protocol for Euthanasia in Newborns - lays out a set of guidelines that must be followed in making and executing the decision to kill a newborn infant."
The excuse to kill the newborn is that they have no quality of life due to a disability, and it is masked by false compassion which says they are alleviating suffering. It is murder, pure and simple. Life Site News states, 

The conditions that would allow babies to be killed in these circumstances include: "progressive paralysis, complete lifelong dependency, and permanent inability to communicate in any way." 
"The whole point of the protocol is to help physicians end the lives of newborns who are so severely afflicted that neither their dying nor their living should be prolonged. That being the case, the pertinent distinction is not between babies who will die and those who could live, but between babies for whom life-ending decisions should be made and those for whom such decisions cannot be morally justified. In bringing within its compass babies who are in no danger of dying - and, indeed, with proper care could live to adulthood - the protocol is even more radical than its critics supposed."
This news is haunting me, and I can't believe that I hadn't heard about it before this. I try to stay abreast of news affecting the disabled, but this one slipped by me. According to Life Site News it was deliberate. Scientists at The Hastings Center, the most prestigious bioethics center in America, where Dr Ezekiel Emmanuel, President Obama's health czar is a member, defends the Groningen Protocol. Don't be surprised when it surfaces in the Obamacare.It does, after all, save the medical establishment millions.
I am increasingly called to study for my Masters in Theology with a concentration in bioethics, available online at Holy Apostles College through a cooperative program with the National Catholic Bioethics Center.
Read more about it at the Vatican Website.

UPDATE Nov 15: here is a very positive post about my talk from the  Roberts Rock Farm.
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Prenatal diagnosis targets babies with Down syndrome

from EWTN news

The media director of the Spanish Bishops’ Conference, Isidro Catela Marcos, has warned that children with Down syndrome are being targeted for “elimination” through abortion.
Due to a rise in prenatal screening, more parents are choosing to abort their unborn children who are diagnosed with the condition.
Catela Marcos made his comments on the eve of Pope Benedict XVI’s Nov. 6 -7 visit to Spain. During the papal trip the Pontiff will consecrate the Church of the Holy Family and visit a home for disabled children in Barcelona.
Referring to children with Down syndrome, Catela Marcos noted that “we know that the number of these people has declined significantly … because they are eliminated before they are born.”
Pope Benedict, he continued, is committed to “the defense of life, of every life, the lives of all, regardless of a person’s intellectual capacity.

Read the entire story on EWTN news.

The Holy Father called for those with disabilitis to take their rightful place in society.
according to America magazine. The visit was intended to underline his message this morning in the Sagrada Familia, where he defended the life of children as "sacred and inviolable from the moment of conception".
Speaking to the nuns and disabled teenagers, he said it was "indispensable that new technological developments in the field of medicine never be to the detriment of respect for human life and dignity, so that those who suffer physical illnesses or handicaps can always receive that love and attention required to make them feel valued as persons in their concrete needs".
He added that he always remembered in his prayers "those who are dedicated to the helping the suffering, and those who work tirelessly so that the handicapped can take their rightful place in society and not be marginalized because of their limitations".

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Sunday, November 7, 2010

The Magnificent Line a column by Paul Daugherty

Paul Daugherty is a sports columnist for the Cincinnati Enquirer. In this blog post he reflects on fathering his daughter with Down syndrome. He is a talented writer with a great heart for his daughter and those with Down syndrome.  I love it when he said,

We’ve spent two decades trying to nudge perceptions. We’ve asked the world to see Jillian, not look at her. Discrimination arrives in many forms, often in places you’d least expect. Fighting the public schools to get our daughter the education to which she was entitled was the kind of combat I wouldnt wish on anyone.
Jillian has overcome all that. She is kind and generous and ambitious and willing. She is the human spirit invincible. She has plans.

We've asked the world to see Jillian, not look at her. Great line. Too often Christina gets stares, which I understand, but I feel sorry when those who stare are afraid or uninterested to take the time to get to know her. They may think that there is nothing of interest because of her diagnosis. How wrong they are! They should find out what they are missing!
The Magnificent Line, 10/15 | Paul Daugherty

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Christina was St Elizabeth of Hungary for All Hallow's Eve

She is always sympathetic to the needs of others, and likes to help prepare meals, so I thought St Elizabeth, who is remembered for her charity to the poor of Hungary (the hungry of Hungary) was a good choice of saints. We celebrated, as always with the Friars of the Immaculate at their beautiful Friary of Our Lady of Guadalupe in Griswold, CT.
After the Holy Mass in the Extraordinary Form, we had a potluck meal, saint guessing games, games of chance with Biblical themes, and a spectacular show of skateboard jumps from Fra Gabriel, who will heretofore be known as the "Flying Friar". He jumped a bucket of flames to the delight of the dozens of children assembled in their costumes on that frosty evening.
Holiness and happiness were in the air as we remembered that we are proceeding towards the Church Suffering and then towards being part of the Church Triumphant.
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Thursday, November 4, 2010

Research Down Syndrome fundraiser supported by NJ First Lady

September 25, 2010:  New Jersey First Lady, Mary Pat Christie hosted a reception and dinner at Drumthwacket, the Governor’s mansion, in support of Research Down Syndrome(RDS). Speakers included Mrs. Christie, Governor Chris Christie, Roger Reeves, Ph.D. professor at Johns Hopkins University School of Medicine and member of the RDS Scientific Advisory Board, and TV host Geraldo Rivera. Mrs. Christie was presented with an award by RDS for her commitment to Down syndrome cognitive research. Roger Reeves informed attendees that a number of potential targets have been identified for the development of drugs that will impact memory and learning in persons with Down syndrome, and that clinical trials are anticipated within the next year. Wall Street Journal columnist Bill McGurn, and “On the Record” host Greta van Susteren also attended the event, and you can read their accounts of the evening in blog entries: Bill McGurn’s New Jersey Rules and Greta van Susteren’s Greta Wire. 

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Monday, November 1, 2010

More photos from St Louis

With Eileen and I it was truly a case of "meet me in St Louis", as we came from Vermont and Connecticut to meet in the middle of the country. We traveled in different planes amidst dire storm warnings and managed, thanks to the prayers of our friends, to meet in plenty of time to collect our thoughts and prayers, and do a good job on the interview.
We'll let you know when it airs next spring.

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In St Louis filming "Faith and Culture" interview

Eileen Haupt and I were invited by Colleen Carroll Campbell, the host of "Faith and Culture" on EWTN to do an interview about KIDS Keep Infants with Down Syndrome. Here are some photos taken the Cardinal Rigali Residence in St Louis during the filming. Colleen gave us a warm welcome, and made the interview seem effortless, despite the fact that she is a nursing mother of twin babies; whom we met after the taping.

 I gave Colleen a copy of Michelle Buckman's compelling novel, "The Death Panels" , and we got into a discussion about the March for Life. The producer invited us to stop by the EWTN tent at the March for Life this January 24, to be interviewed by Teresa Tomeo about KIDS. Look for us in their live coverage of the March. Our "Faith and Culture"  episode will be aired sometime around Easter.

We passed a portrait of Cardinal designate Ramond Burke who presided over the Archdiocese of St Louis until his appointment to the Vatican.

We said a rosary of the Mysteries of Light in thanksgiving in the breathtaking chapel.

 We celebrated afterward by touring downtown St Louis to see the magnificent 'new' Cathedral, which is not a Basilica, and the the Mississippi River and the Gateway Arch.
The National Park Service has a fascinating museum about the Lewis and Clark expedition. Lewis and Clark passed St Louis while exploring the Louisiana Purchase.

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