Monday, December 27, 2010

Good news on the Down syndrome research front

This is from Peter Elliot of the Down syndrome Research Foundation
  • . There has been some very successful research in 2010 that you may not know about. The Optima Team at Oxford published the results of a 2 year RDB project that tested a medicine of folic acid+B12+B6 at a high dose rate to prevent the loss of brain tissue seen in patients with early onset dementia. After 2 years everyone on the medicine saw a benefit compared to those on the placebo. Adults with DS are at high risk of dementia and this happens much sooner. I have been talking to this research team and they have agreed to help design a medicine for our children and this will target a correction to the biochemistry caused by trisomy 21. The objective is a nutrition based medicine that prevents problems and allows more normal growth and development. We can now see the genes that are effected by Trisomy 21 so we can also see when they are being corrected. This is amazing technology. This research should be underway in 2011 and we will be needing parents who have a young child with DS and a near same age and same sex normal sibling to volunteer to donate small blood samples for this genetics and biochemistry research project. I need the names now so we know where you are and you can email me at dsrf_uk@yahoo.com. The project will be based in Europe but we have close ties and a collaboration with leading researchers in the USA. DSRF-USA is a new registered Non Profit in Texas and will be linked to DSRF-UK through our fundraising and website activity. Nothing happens until the parents get involved and I am just ONE parent. Now is the time for you to get involved. Information on this technology will be posted on our website next month. How is the DSRF-UK and the DSRF-USA different from all the other DS organizations? We are proactive and we seek out the best research, we dont have any paid employees and we dont assume someone is going to help our children and come knocking at our door. We find the best researchers and we ask for their help and we offer to help them. We Collaborate and support the programs that can find very safe medicines. Medical research to find the medicine that will help our children and transform their lives is our objective. Show your support and send a donation from our website and write to me and volunteer for research. A lot of work lies ahead but the researchers have agreed to help us. Now its your turn. Peter Elliott - Research Director - DSRF-UK / DSRF-US


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Christmas 2010

We spent Christmas Eve enjoying a traditional Polish Christmas Eve dinner at the Bothurs's home (you know Kristin from 11 On My Own). The meal was outstanding; mushroom soup, codfish, homemade potato and onion pierogies, poppyseed cake, deviled eggs, beets with horseradish, egg noodles, and shrimp cocktail. We played Christmas carols and enjoyed each other's company.  As if anything could top this, it would be Holy Mas which we attended at Midnight at St Mary's parish where Gabbi and I sang the Mass of the Shepherds, Ave Maria by Tomas de Vittoria, The Coventry Carol, Adeste Fideles, and Joy to the World.
It was a Christmas Eve I will always remember for the fellowship and sheer spiritual beauty. I will be incorporating ideas from Fr Tito's impressive homily into my post on tomorrow's Feast of the Holy Innocents.
Christmas day started a bit late, but the children eventually got us out of bed. I remember 13 year old Bella flinging herself on our bed yelling "ITS CHRISTMAS!!!" By tee time I lumbered downstairs (remember my back was still in spasm since Thanksgiving), the fire was blazing and I was given the most comfortable chair to enjoy the view of the children's joyful opening of gifts. First we placed Baby Jesus in the manger, and thanked Him for His birth, then the frenzy began. I'll let you enjoy the sights rather than describe them.
Dinner was made entirely by the teenagers since my back was getting worse; ham, green beans, squash, mashed potatoes, rolls, topped off by coconut custard pie.
We visited our friends the Dudas,  for caroling and a rich variety of snacks and dessert, and realized that we have finally established ourselves at home in Connecticut, where we feel part of the community in every respect. God has truly blessed us.






God bless us, every one!
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Thursday, December 23, 2010

My Christmas card is coming!


I am a little late this year, my back is still in spasm, but the girls managed to put together a wonderfully artistic, yet deeply religious Christmas card this year. For those of you who won't be getting it, the interior of the card has the lyrics of "O Holy Night", followed by "The Velasquez family wishes you a Blessed Christmas"
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Wednesday, December 15, 2010

Christmas gifts for your family

I have been trying to catch up on my book reviews. Here are two reviews of books which would make wonderful Christmas gifts; for moms, Mother Teresa and Me: 10 Years of Friendship by Donna Marie Cooper O'Boyle.
For the children in your life, I recommend, The Star of Christmas and the DVD A Christmas Carol.
I'm working on a suggestion for Dads, stay tuned.
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Tuesday, December 14, 2010

"the Good of Society" vs the good of the mother

When a PhD student at the University of Victoria in New Zealand did a study on women's opinions on pre-natal testing, she was surprised by what she found. Pre-natal screening of unborn babies for genetic defects like Down syndrome have become an accepted practice in medicine. But Dr Donovan, a Sociologist found an important distinction; accepted by whom? The medical establishment or the pregnant women themselves? In this she found some surprising disparities.

There is an unrecognised tension between how screening is understood within the medical profession and how it is experienced by pregnant women themselves. The public health sector endorses screening which is seen as a health good and an economically useful approach.
"Medical literature often presents the reduction of Down Syndrome as a desirable public health goal. However, I found this is not necessarily in line with the views of 'ordinary people' on what is good use of health spending.
Here's the crux of the issue;  'public health goals' are being imposed upon women without their knowledge or informed consent. They are not being made aware of the potential miscarriages with amnio, the possibility of mis-diagnosis, or what to do if an anomaly is discovered. This is the case in every nation with a 90% abortion rate for Down syndrome, the mothers are pressured to make a decision as soon as a diagnosis is given, with only negative counseling. They are not given time to think, do research or get to know women who are raising children with Down syndrome. Public health goals are imposed upon women and they are starting to rebel.

Dr Donovan believes more public debate is needed on the wider issue of giving birth to children with disabilities.
"The medical profession might seek to decrease incidence of conditions such as Down Syndrome but we don’t know what the general public thinks.
"There are actually a range of views out there including women who believe families should have the right to give birth to a disabled child and not be discriminated against for their choice."

Read more here. 
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My Christmas picture cards

Thanks to Hallie Lord's helpful post at Faith and Family Live, I discovered Shutterfly's  offer of 50 free Christmas cards for bloggers(sorry, registration is now closed, remember this for next year).
 It was good news, at a time when I was about to give up on getting Christmas cards done. Last year I didn't even get to it, and since I moved many of my friends don't have my address, this is a great way to send it to them. I still have their cards up on my kitchen cabinets from last year, I couldn't bear to take them down.
This is my first non-media product endorsement,  I can sincerely recommend these cards, since I have made my Christmas cards over at  Shutterfly before (see the upper left photo of the girls,  surrounded in blue).
I found them on my own a few years ago, when Shutterfly was one of the few make-a-card sites where you could get a good assortment of religious photo-card templates. 
We just took about a dozen pictures of the girls in their Mass clothing and are trying to select which one of the 37 religious templates to use. We took photos in black and white, sepia, and in color, on our staircase, adorned in garlands. I am trying to decide between this template and this one. 
It depends on which photo we choose as the winner.We can use a group shot or break up the shot into individual portraits. This might work where you have a good shot for the older girls,  but  with a restless little girl like Christina, you can count on shots where she is a blur!
I'll post a copy of the card when its done.
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Monday, December 13, 2010

Sign up for webinar update on targeted Down syndrome reading study

Remember the targeted reading study I told you about last October which is taking place in Portsmouth and York in the UK? I posted about it here. 
 It is a custom designed reading program for children with Down syndrome and is being field tested in these cities before date is collected and the materials are marketed to schools worldwide. Sign up here for a free webinar to learn about the amazing progress these students are making at Downs Ed International.

 No worries if you can't; I'm  registered and will be reporting on it here.

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Saturday, December 11, 2010

Please join us in prayer for my Aunt Teresa

She may be going to Jesus tonight, and has received he sacraments, we are prarying the Divine Mercy chaplet to pray her home. Please pray for her, and join us in this meditative song about Baby Jesus coming down from the stars to shiver in the cold for love of us.








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Friday, December 10, 2010

Have abortions of babies with Down syndrome gone down?

Christmas has just come early for me. This is what I have been working on for four years since I became a freelance writer in earnest; to lower the abortion rate (and raise the birth rate) of children with Down syndrome.
This article seems to confirm my dearest hopes; to save our precious children from death.

The study indicates that there are about 6,000 diagnoses of Down syndrome each year in the United States. One in every 691 babies is born with Down syndrome. This is an increase from the previously reported statistic of 1 in every 733.
This is a small increase of 42 more babies with Ds born each year. We are moving in the right direction!
Thank you, baby Jesus!




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Thursday, December 9, 2010

Has your Advent been sidetracked?


Advent is a challenging time to be prayerful and meditative.Sometimes as I said in my Catholic Mom post, its creeping commercialism which invades our homes, but sometimes its more serious matters
 I spent last week bedridden with back spasms, but thanks to having set the stage in former years, my teens know the drill. They played St Nicholas for Christina, bought my Advent candles (white this year), set up the manger,  and  the Jesse Tree. When I was able to get out of bed, Advent was already in progress. The gift I have been giving my children in a holy Advent is beginning to produce returns. Thank you, Baby Jesus!
Last night we attended a beautiful Mass of the Immaculate Conception and enjoyed peppermint hot cocoa and brownies in honor of Our Lady.


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Tuesday, December 7, 2010

Danger and Opportunity

The Chinese character for "crisis" is a mixture of the characters for "danger" and "opportunity". So, when my life felt endangered this week, by an mole in my eye, God, in His mercy turned it into an opportunity. An opportunity to appreciate my life as never before.
I thought I was over the "it can't happen to me" attitude when I had a daughter with Down syndrome, something that happens in about 1% of births to women in their thirties. I know it can happen to me. I have two friends, Lisa and Pat, who are breast cancer survivors, and one, Mary, who wasn't. I, like Mary,  can die in my late forties, if God wills it.
But still, I was taken aback when, last June, the opthamologist told me I could have a uveal melanoma in my right eye, right near the optic nerve, and that removing it which might be necessary to save my life could destroy the vision in that eye. I was paralyzed with fear, in my bed, watching my life pass before my eyes.
It took the prayers of my little saint, and many of you to get me back on my feet. Then a check up at Massachusetts Eye and Ear Infirmary told me it wasn't cancerous. Yet. I made an appointment to return December 6 relieved that the spot wasn't cancer but wishing to be done with this threat on my life. It was not to be.
Yesterday, on St Nicholas Day, Francisco took me into Boston and the re-check was good news, the 'freckle' has not changed. Yet I was dismayed to hear that I'll be doing this for he rest of my life, visiting Boston every six months for intensive and expensive eye examinations. This spot could change and threaten my life or vision at any time. It was hard to accept, even in the midst of gratitude for a reprieve. And a reprieve it is. For now. So I returned home with a renewed appreciation for the gifts I have been given. The gift of family, the gift of beauty around me, the gift of faith. Appropriate for the feast day of a man whose legacy is intertwined with gift giving in the Christmas season.
We ate lunch in the hospital cafeteria, overlooking Cambridge on the Charles River, eating hot chicken soup mindful of the icy winds whipping up waves on the water below.  Navigating through the city to the Mass Pike, I pointed out places the girls and I had enjoyed dinner, the preview of "Voyage of the Dawn Treader" or hors d'oeuvres with the Catholic New Media Celebration. Boston is a city with happy memories. I realized that it had been far too long since my husband and I were together in a big city. When we were single, Francisco was obtaining his green card at Immigration in Lower Manhattan, which brought us there a few times. Just before Christmas in 1991,  we picked up my engagement ring at a Cuban jewelers on Canal Street. He didn't put in on my finger in the store, he waited until we were in the multilingual bustle of a cafe in Little Italy. He slipped in on my finger, and, to his horror, the conversation halted; all eyes turned on us as smiles turned to applause. It was one of the highlights of my life, and walking homeward through Little Italy, as huge soft snowflakes fell, I felt as though I could fly.
Yesterday was just as magical. Driving home through the Connecticut countryside, we took scenic Route 169 past prep schools on rolling hills, past dairy farms and quaint antique shops, and though it was sunny, snowflakes filled the air. I was playing Christmas carols in the car, it was another moment of perfection in our lives as we planned when to buy our Christmas tree, and whether to have an open house with our neighbors for Christmas. We surprised Christina by picking her up at school and she yelled, "Daddy" and threw herself into his arms. Her entire class greeted her as they filed by, and we arrived home to a roaring fire and contented family.
Mom was going to be all right, for now.
Life is good. Life is very good.
Deo gratias.

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My column at the Ethiopian Review

Yes, you read that right, the Ethiopian Review. I did a double take myself.
Someone there is a Catholic, because, for the second time, my column at Catholic Mom has been copied and reposted there.
How do you say Merry Christmas in Ethiopian?

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Saturday, December 4, 2010

Darlene Wagner is a Catholic hero

I nominated Darlene for Catholic hero at Catholic Digest for her pro-life work at Birthrght, Ave Maria Home, and the Face of Pro=Life. She's been helping pregnant women since Roe v Wade.
Read the article in Catholic Digest.


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Friday, December 3, 2010

A Day of Recognition for parents of Special Needs Children

from our friend in Congress, Rep Cathy McMorris Rogers:


3 December 2010 

Dear Friend,

I wanted to take a minute to tell you about a very important piece of legislation that I co-sponsored, which passed the House yesterday. This resolution, H.Res.1576, would establish a National Day of Recognition for Parents of Special Needs Children. I joined with 41 of my colleagues in a bipartisan way to highlight the importance of recognizing parents of special needs children. I am pleased that this legislation passed with such overwhelming support, and I am excited to continue fighting for this cause as your Member of Congress.

As a mother of a special needs child, I can say without a doubt that my son Cole has given me an entirely new perspective on life and has reshaped my purpose for being in Congress. More than that, though, he's given me the opportunity to meet and work with so many otherparents of special needs children – parents who have selflessly dedicated their lives for the betterment of their children. It is these parents who have opened their hearts and shared their lives in order to pave the road to a better and brighter future for Cole and other children.

Everywhere Brian and I go, we meet families who share with us their stories about a loved one with special needs. They all speak passionately about the positive impact that their children have on their lives. These are the parents who have helped Brian and me see the positive impact that Cole will continue to have on our lives and the world.

It is with tremendous pride that I recognize the parents who dedicate their lives to improving those of their children. While the passage of this legislation is extraordinarily exciting, it is just the beginning. I will continue to work tirelessly as a leader in the Congressional Down Syndrome Caucus and as your Representative in Congress. 


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Thursday, December 2, 2010

When a writer has a special needs child

Read this remarkable story about a Nobel Lauraete and his autistic son.
 When we say 'no' to the challenge of a special needs child, we have no idea the gift we are refusing.

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New Zealand parents speak out against genocide of babies with Down syndrome

from Contact Genetique, an email newsletter of the Fondation Lejeune

"Screening for Down syndrome is genocide"

"Screening for Down syndrome is genocide"A group of parents with Down syndrome children from Right to Life, a New Zealand pro-life organisation, are threatening to take the government to the Court of Human Rights over its Down syndrome antenatal screening programme, introduced by the Health Minister in February 2010 without public consultation.

The parents claim this screening programme discriminates against people with Down syndrome as it violates article 2 of the UN Convention on the Prevention and Punishment of the Crime of Genocide by imposing measures intended to prevent births within a specific group of human beings. Article 2 of the Convention defines genocide as an act committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group as such by imposing measures intended to prevent births within this group.

The parents argue that people with Down syndrome constitute a stable and permanent group who are genetically related through the possession of a third chromosome on the 21st pair and who also share the same physical characteristics. They can therefore be defined as an ethnic group. The presence, form, presentation and management of this antenatal screening programme "sends a clear message to people with Down syndrome that their lives are not valued and reinforces discrimination towards them", they said.

The health ministry documents state that this programme will reduce the number of Down syndrome births; 90% of these babies are aborted.

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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,

Cathy

H.CON.RES.329

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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