Help Genetic Counselors help Down syndrome parents

From the National Down syndrome society
Just as we all work to provide medical professionals with information that will enhance their skills in delivering a diagnosis of Down syndrome, there are others within the medical community doing the same thing.
Currently, there is a survey online, written for a Master's thesis project, which hopes to construct practice guidelines for providing information to new and expectant parents receiving a diagnosis of Down syndrome.
The study's author says, "This study combines the complementary perspectives of parents and Genetic Counselors (professionals trained in clinical genetics and counseling skills) for the construction of guidelines to ensure that the first information parents receive about their child's diagnosis is balanced, accurate, and consistent. Your involvement is extremely valuable to healthcare professionals involved in distributing information and resources and those involved in the care of individuals with Down syndrome and their families." Please go online to take this study, and encourage your members to do so, too. This is a terrific place for your voice to be heard!
Click here to participate.

Feast of the Archangels, Gabriel, Michael, and Raphael

Danielle Bean has a great post over at Faith and Family Live on how to celebrate this important feast with your little angels.

My father is Ralph, my daughter is Gabriela, and my nephew is Michael, so this is a big feast day in our home.

This is my favorite prayer:

St Michael the Archangle, defend us in battle,

be our defense against the wickedness and snares of the devil,

May God rebuke him, we humbly pray,

and do thou, O Prince of the Heavenly Host,

Cast into hell, Satan, and all the demons who prowl around the world, seeking the ruin of souls.

Amen

A Formerly homeschooled child's worst nightmare

For your entire academic career, you have been homeschooled. You wait two years before you and big sister tell Mom you'd really like to go to school.

Mom moves the family three hours from home to a school she deems Catholic enough to educate you, and signs you up for school. You attend school for two weeks, emerging from the classroom each day bursting with talk about new friends and the yucky things the boys in class said. You do your homework enthusiastically and cover your new textbooks.

Then Mom tells you the bad news. She has just gotten a job to help pay your tuition.

It's a teaching job.

It's in your school.

She'll be teaching your class!

This Monday is her first day. . .


NO!! It can't be true! you wail.

But there she is in your classroom, learning the ropes from your teacher who is going out on extended leave for two months, and your new friends pump you for information on how mean your mother is. And you aren't allowed to tell her.

Poor Isabella!

How to make your teenage daughter cry

Tonight we were housecleaning for Dad's arrival from work. While I was busy in the bathrooms, I got my very first invite on a Hollywood junket; free plane, hotel, etc. to see a preview of High School Musical III as a film critic. Several other writers were invited, and one beat me to accepting it.
I made the mistake of telling Gabbi who accompanied me to Hollywood for the first time to see the premiere of "Mr Blue Sky", only we paid for that trip.
She won't let me leave the computer now.
Sigh. At least I don't have to fret about what I would wear!

Hope in the midst of suffering

Former Senator from Pennysylvania, Rick Santorum was just on my favorite news program, "The World Over" with Ray Arroyo on EWTN, and shared that his wife Karen just gave birth to their 8th child, Bella, who has Trisomy 18.
When I interviewed him for an article in this month's Canticle magazine, about his valiant defense of the Partial Birth Abortion Ban, we discussed the blessings which these special children bring to the lives of their families, in fact he told me about the young man, Brendan with Down syndrome he mentions in this column in the Philadelphia Inquirer.
"In a country where some politicians now promise to end suffering, and where our usefulness seems to be measured in dollars, these special individuals stand as complex, mysterious contradictions from a loving God.
They remind us that it is not just our capacity to achieve, but our capacity for sacrificial love that will change the character of America for the good. And that character will inspire true hope - and that hope does not disappoint."
Bella was born in May, nine months later. God, in His providence was using me in a small way to help prepare Rick for this new challenge. Now I join the thousands who are praying for Bella to beat the odds, and live a long and healthy life.

President Bush is the one to sign "Prenatal Awareness Bill"

from Citizen Link
The U.S. House of Representatives on Thursday passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810), which will provide up-to-date information to families that receive adverse prenatal genetic diagnoses.
The bill, which now heads to President Bush's desk, would supply families — prenatally and up to the baby's first birthday — with a connection to support services and networks that can offer assistance.
“Passage of this bipartisan bill in both the Senate and House is a great victory for expecting parents who learn that their unborn child may be born with a disability,” said Sen. Sam Brownback, R-Kan., who co-sponsored the bill with Sen. Edward Kennedy, D-Mass.

Susan B. Anthony List

Exciting update: The Prenatally Diagnosed Conditions Awareness Act passed in the Senate this week! Thank you for your action on this bill. We need your help again for it to pass in the House.
This bill helps parents when they need it most. It would provide for resources so that if a parent is given a difficult diagnosis, they will have the information they need to face tough decisions ahead.
Go here and urge your Congressman to support this bill.
Speaking about her experience with prenatal diagnosis, Governor Sarah Palin said, “I was grateful to have all those months to prepare. I can't imagine the moms that are surprised at the end. I think they have it a lot harder.” When given a difficult diagnosis about their unborn child, shock and fear rise in the hearts of most parents. This bill would help educate parents about the condition and provide support in their time of need.This bill has the potential to reduce abortions! Help make that happen.

I love your blog award

Esther and Heidi, two of my favorite bloggers have given me this award.
As a recipient of this award, there are rules to follow. I have to answer the following questions with one word answers and one word only! Then I must pass it on to seven others!

The questions are as follows:
1. Where is your cell phone? kitchen
2. Where is dh? bed
3. Your hair color? Brown
4. Your mother? home
5. Your father? home
6. Your favorite thing? Heaven
7. Your dream last night? nervous
8. Your dream/goal? Rome
9. The room you're in? dining room
10. Your hobby? gardening
11. Your fear? hell
12. Where do you want to be in 6 years? TV
13. Where were you last night? home
14. What you're not? patient
15. One of your wish-list items? camera
16. Where you grew up? NY
17. The last thing you did? work
18. What are you wearing? PJs
19. Your TV? off
20. Your pet? cats
21. Your computer? fast
22. Your mood? content
23. Missing someone? yes
24. Your car? van
25. Something you're not wearing? hat
26. Favorite store? LandsEnd
27. Your summer? busy
28. Love someone? yes!
29. Your favorite color? Blue
30. When is the last time you laughed? today
31. Last time you cried? today

I nominate the following bloggers:
1. Elizabeth
2. Jean

Now, for you recipients of this award, here's the deal:
* Display your award.
* Link back to the person who gave you the award.
* Nominate at least 2 other blogs.
* Put links to those blogs on yours.
* Leave a message on the blogs of the people you've nominated.
* Enjoy your award!

Was this great legislative victory due to Thomas Vander Woude's intercession?

I certainly think so. Here is the press release on the passing of the Prenatally Diagnosed Conditions Awareness Act. I think Tom is on the road to sainthood.

BREAKING NEWS: Brownback bill passed!!!

Thanks be to God, and all of you who have taken action, we have taken one more step towards giving babies with Down syndrome a better chance of making it to birth by giving their parents access to the truth.
Sen Sam Brownback, a pro-life Kansas Republican and co-sponsor of the bill, told LifeNews.com he's glad the Senate approved it.“This bill will greatly benefit expecting parents who receive the sometimes overwhelming news that their unborn child may be born with a disability," he said. "This legislation will provide parents with current and reliable information about the many options available for caring for children with disabilities.”
from Life News.com
The truth of the positive lives lived by people with Down syndrome,the truth that treatments are being discovered to help the cognitive abilites of these childrenthe truth that there is a waiting list of parents waiting to adopt babies with Down syndromeThe passage of the Kennedy Brownback bill in the Senate is a triumph for the truth.Will the House now pass this important legislation?
Read the entire article here on Life News.com

Thomas Vander Woude is a true hero

I found the blog of the family of the heroic man who gave his life for his son with Down syndrome who was drowning in a cesspool. Here is the video of Senator Brownback's speech on the floor of the Senate where he tells the story of Tom's noble sacrifice.(when you click on this link the player will display the time of the speech on the upper right hand corner. Senator Brownback spoke from 1:05 ET)
Here is the blog of Tom's daughter-in-law A Lee in the Woudes where you can find photos of Tom and the inside story as well as the widespread news coverage. Senator Brownback said that he wanted to pass this bill in honor of Tom's sacrifice, however Bernie Sanders defeated the bill in favor of partisanship.
He should be ashamed of himself.

40 Days for Life Opening Mass

In the Cathedral of St Patrick this evening we attended a beautiful Mass with a very informed homilist on life issues. We sang "The Battle Hymn of the Republic" as a recessional hymn, and it struck me that the abolition movement gained this wonderful hymn in Hartford as Julia Ward Howe heard abolitionists sing "John Brown's Body". Now, only an hour away from Hartford, a new generation of "abolitionists" this time for the abolition of abortion, is inspired by her beautiful words.
It was part of the sendoff for Norwich's 40 Days for Life Campaign. It was followed by a reception and rally downstairs where we met some friends from the Pro-life Coffee House at the Academy and made some new friends. People in this diocese are very friendly and when you add the bonding which comes with being on the front lines in the abortion wars, you get instant SOLIDARITY.
Reminds me of a certain Polish Pope, who overcame Communism with prayer and unified protests.

Please help St Joseph School

As you know we have just left Long Island, my home for four decades, for a very good reason. Two excellent, faithful Catholic schools are here in Baltic, CT for my two girls. I have posted about St. Joseph and the Academy of the Holy Family here.
Isabella is happily attending school at St. Joseph, meeting new friends, and growing confident about her ability to function in a school setting after being homeschooled for her entire six years of schooling till now. She is surrounded by love and the glory of Catholicism every day at St. Joseph, so when she came home with a fundraising catalogue, I promised to do my best to help her help her school. It's a small school in an area which has many other Catholic schools, but what St. Joseph offers is unique. Habited sisters from the Sisters of Charity of Mary Mother of the Church operate and teach at the school, giving a living example to the children of the joys of consecrated life. Dedicated lay teachers with rich spiritual lives, teach there in the same spirit of joyful traditional Catholicism.
St. Joseph is a treasure which must be preserved. If you feel inspired, please click on the image of the Yankee Candle catalogue on this link and email me with your orders, giving me the item description, number and price. I'll return your email with payment instructions. We have one week (till Sept 29) to show St. Joseph that great Catholic schools have the support of the Catholic faithful.
And the candles are fantastic too! Yankee Candle has always had the most fragrant candles, which I buy regularly at the same price from home stores. Now we can stock up for Christmas, and help a good cause too.

Thanks in advance for your support.

Padre Pio's feast day

Father Stefano Manelli, FI
“It has also been written that ‘Padre Pio penetrated [the mystery of] Mary’s sorrows and participated therein, copied them and relived them; just as his soul was made a participant in the sufferings of the Passion, so too did he have the gift of participation in the sorrows of Mary.’ It could not be otherwise, since there is an intimate and ineffable unity between the sufferings of Jesus and the sufferings of Mary, not only on the level of the flesh, but even more so on the level of the heart and of love…”
Mary at the Foot of the Cross, V (Academy of the Immaculate: 2005), 496.
from the daily email meditations of Mary Vitamin

Senator Sam Brownback's speech on Prenatally Diagnosed Conditions Awareness Act

This speech was given Thursday September 18 on the Senate floor
Madam President, we also, I think, need a government that will stand up for the weakest and most vulnerable amongst us as well. I have got a real story of human heroism that I wanted to share with the body, and then I am hopeful we can agree to a piece of legislation that Senator Kennedy and I have done that has been rolled into this bigger package that has drawn a lot of difficulty. But this is a piece Senator Kennedy and I have worked on for a couple of years now. There is no reason for this to be blocked. So I am hopeful we can then move to it and pass it through this body, move it on forward.
I have got a picture of a gentleman. I want to show you a wonderful man. This is Thomas Vander Woude. This is an incredible story here in the suburbs around Washington, DC. On September 8, Thomas Vander Woude returned from mass that he had gone to in Gainesville, VA. He attended mass regularly and was working in his yard with his youngest son, who is 20 years old, Joseph. He is known by the family as Josie. Josie is a Downs syndrome adult. He fell through a 2 foot by 2 foot piece of metal that covered an opening to a septic tank, Josie did. His dad Thomas immediately rushed to his aid. According to an account in the Washington Post, when he saw that Joseph could not keep his head above the muck, Vander Woude, who was 66, jumped in the tank, ``submerged himself in sewage so he could push his son up from below and keep his head above the muck.''
Tom Vander Woude saved his son, but he drowned in the process. As it is stated so eloquently: There is no greater love than to lay down your life for another. And Tom Vander Woude laid down his life for his 20-year-old Downs syndrome son. This is a beautiful story that has taken place of the dedication of a father for his son, an act of heroism, but in his quiet life of dedication to his son, to his wife Mary Ellen of 43 years, to his six sons, 24 grandchildren, and to his country. Tom served his Nation as a pilot in Vietnam, and after the war worked as a commercial airline pilot. Around the community of Gainesville, though, he was known as a generous neighbor, a volunteer at church, a basketball and soccer coach for the high school in Manassas that five of his sons attended. He was also a farmer, something dear to my heart, I know to the Chair, the Presiding Officer as well. Most of all, he was known as Josie's devoted dad. Wherever you found Tom--at a game, at church, helping a neighbor--there was Josie, lending a hand. Tom Vander Woude knew the value of his son's life. He considered it so precious that he gave his own to save it. He never considered the special care and attention that Joseph required because of his Downs syndrome, he never considered that a burden to the family. On the contrary, ``he always considered Joseph a wonderful blessing to the family,'' a special gift from God who brings out the best in his family and the lives of all of those he touches.
This is true of so many families who have children with difficulties. They find that through all of the difficulty and trial of caring for and providing for their child who has a mental disability, these special individuals are ambassadors of love and of understanding, filled with an openness and unconditional affection that acts as a humanizing force of compassion in their families and in their communities. But we have to be open to this kind of gift and to the potential of every human life to make our world a better place.
Now that I reflect on Tom Vander Woude and the value he placed on the life of his son, I also thought of Sarah Palin and what she said about her son, Trig, born in April. When the Governor and her husband Todd were told last year that the child she was expecting in May would be born with Downs syndrome, they knew that ending that pregnancy was never an option for them. After all, why would it be? ``We understand,'' she was quoted as saying at the time, ``that every innocent life has wonderful potential.'' The problem is that between 80 and 90 percent of the children diagnosed with Downs syndrome in the United States will not make it to the world, simply because they have a positive genetic test in prenatal screening, tests which can be wrong, by the way.
I have had a number of people come up to me and say they had a positive Downs syndrome designation and the child was born and the child did not have Downs syndrome. America is poorer because of this. To deny children with disabilities a chance at life will make us more insensitive, callous, and jaded, and will take away from the diversity of American life. I do not think this is what we were meant to do. So Senator Kennedy and I, for about 2 years now, have been working on a bill. What we are trying to do with this bill is to see that more Downs syndrome children make it here and get here. It is a pretty simple bill that establishes a registry of people who are willing to adopt Downs syndrome children. So that if someone gets that diagnosis and they say, I cannot handle it, fine. The answer is not to kill the child, the answer is to put the child up for adoption. We have got people willing to adopt it, and also to put forward information to people about the current condition of a Downs syndrome child and what all is available, because a lot is available for this child.So we worked a long time, got the spending lined up--we are in good shape on that--and we are ready to move forward with this so we can get more of these special kids here. What I was hoping we can do, and we had it almost passed through, and then this got caught up in the clutter of things, was that we could get this bill hot-lined--Senator Kennedy's sister is a big proponent of this, has done great work with the Special Olympics--that we could do this. It got caught up in this overall package. Nobody objects to this bill. What I would like to see us do is let us take the pieces of this overall omnibus that we can agree to and let's do them. So then we have got some progress that is being shown.
UNANIMOUS-CONSENT REQUEST--S. 1810 I ask unanimous consent that the Senate proceed to the immediate consideration of Calendar No. 701, S. 1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act. The lead sponsors are Senator Kennedy and myself. I ask unanimous consent that the amendment at the desk be agreed to, the committee-reported amendment, as amended, be agreed to, the bill as amended be read a third time and passed, the motion to reconsider be laid upon the table with no interviewing action or debate, and that we can get more of these special children here.

Senator Bernie Sanders of Vermont was the lone dissnenting vote that defeated this measure.
Email him and let him know how you feel about this.

News on Kennedy-Brownback bill from NDSC

NDSC and NDSS Urge the Down Syndrome Community to Take Action Today!
Prenatally and Postnatally Diagnosed Conditions Awareness Act - ANOTHER CRITICAL VOTE SOON!
The development of up-to-date, accurate and evidence-based information should never be a partisan issue.
The Senate may soon hold another critical vote on S. 3297, the Advancing America's Priorities Act, a package of 35 bills which includes the Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810), introduced by Senators Kennedy (D-MA) and Brownback (R-KS). This may be the first of several votes on S. 3297. However, this first vote likely will determine whether the Senate passes the Prenatally and Postnatally Diagnosed Conditions Awareness Act this year!
Therefore, please contact your Senators immediately and tell your friends, family, colleagues - and everyone you know - to do so as well. Urge your Senators to vote YES on S. 3297. Even if you already have contacted your Senators this week, your outreach is still needed. We want to fill Senator's inboxes and make it clear that they must pass the Prenatally and Postnatally Diagnosed Conditions Awareness Act this year.
Letters you can personalize and send to your Senators are available in the Advocacy Action Center of the NDSS website, here: http://capwiz.com/ndss/home/. If you don't know the names of your Senators, don't worry. The Advocacy Action Center automatically will identify them for you and enable you to contact them directly from the site.
Talking Points

Please use the following talking points when you call your Senators' offices today:

I am a of the Down syndrome community calling to urge my Senator to vote YES on S. 3297.

The two national organizations, National Down Syndrome Society (NDSS) and National Down Syndrome Congress (NDSC), representing over 400,000 individuals with Down syndrome and their families, also support the passage of this bipartisan legislation.

The S. 3297 bill includes, Prenatally and Postnatally Diagnosed Conditions Awareness Act, which is a bipartisan compromise that will promote and develop up-to-date, evidence based information and materials for parents who, increasingly in the 21st century, receive a prenatal diagnosis of Down syndrome and other genetic conditions.

This is a nonpartisan issue that affects all of our children and adults with Down syndrome and their families.

The development of up-to-date, accurate and evidence-based information should never be a partisan issue.

Brownback to introduce our bill today: Take Action!

9/19 UPDATE:Senator Brownback DID introduce the bill yesterday for an unanimous vote (if any one Senator objected, the bill was not approved) and the lone vote of protest was Sen Bernie Sanders of VT. He is in the tank for Harry Reid who wants this now popular (thanks Trig Palin) bill to be attached to his omnibus spending bill.
This, Senator Brownback's office informs me, is how to kill a bill.
Why don't you let Sen Sanders know how you feel about his killing a bill which would provide information and support to parents expecting a child like Trig Palin? Click here.


We have received word that Senator Brownback (R-KS) will bring up the Prenatally and Postnatally Diagnosed Conditions Awareness Act at 1:00 pm TODAY.They have asked us to call the following Senators:
Lieberman (I-CT)
Dorgan (D-ND)
Webb (D-VA)
Casey (D-PA)
Please contact these Members' Offices and encourage them to say something on the Senator Floor in support of the bill today.
Please ACT NOW! The Capitol switchboard is (202) 224-3121
The Prenatally and Postnatally Diagnosed Conditions Awareness Act will provide funds to develop accurate, up-to-date materials and information for families that receive a diagnosis of Down syndrome or other genetic conditions so that parents can make informed decisions.
It's time to take advantage of all the buzz created by Sarah Palin's son Trig. Let's help parents expecting a child with Down syndrome overcome their fear and understand the reality of life with a special child.

Two Down syndrome babies

I told you babies like my Christina would change the world.
Here's proof: A Tale of Two Down Syndrome Babies by Paul Kengor, a professor of Grove City College in the National Catholic Register.
How the candidates Sarah Palin and Barack Obama treated unborn babies with Down syndrome may just be the make-or-break point in this election. AMAZING!
Jesus told us we would be held accountable for how we treated the "least of our brothers", for that is how we are treating Him. It is my deepest hope that Barack Obama may feel His judgement on his sinful position on abortion before it is too late. Before more children with Down syndrome have to die, and our nation falls even deeper into the Culture of Death.
Here is Paul Kengor:
Obama’s intransigence was best shown in the eyewitness experience of Jill Stanek, the nurse at Christ Medical Center in Oak Lawn, Ill., who provided testimony to Obama’s committee in the Illinois Senate. To Stanek’s amazement, Obama was unfazed by her devastatingly sad testimony of cradling a newborn baby who had just survived an abortion. That baby was refused medical care. He was sent to the soiled utility room to endure a heart-wrenching, excruciating death over the course of 45 minutes.
“He was too weak to move very much,” remembered Stanek, in testimony for which the hospital fired her, “expending any energy he had trying to breathe. Toward the end, he was so quiet that I couldn’t tell if he was still alive unless I held him up to the light to see if his heart was still beating through his chest wall.”
Why was this poor, innocent, helpless little boy sentenced to this unjust, wicked execution? Because of this crime: He had Down syndrome.
That Down syndrome child was unable to affect Obama’s oft-expressed “least-of-our-brothers” compassion and protection.
But a Down syndrome child fully received Sarah Palin’s motherly compassion and protection. And pro-lifers everywhere feel the difference in this selective “social justice.”
As Fr Frank Pavone says, a candidate's fitness for holding the most powerful position in the world is determined by his character. Governor Palin and John McCain have the courage to stand up for the unborn. They have the moral fiber we need to bring this country forward.
We can see this so clearly in the stark contrast of the treatment of these two baby boys. Children who are considered the 'least of these' have much to teach our society. Are we able to listen?

"TG" New magazine for young Catholic women

I review "TG" magazine on Catholic Media Review. If you're looking for a healthy alternative to teenager or immoral woman's magazines, this is it!Give it a try for yourself of a young woman you love.

We can change society for our kids

As a result of The Arc's work, a trailer is being added to the DVD movie versions of Tropic Thunder. The same PSA is going to be aired in Walmart stores nationwide. The Arc is also approaching movie theaters and video store chains about it as well.
The PSA can be viewed at the Blueberry Shoes website.
Well done, Arc of Northern Virginia, parents of children with intellectual disablities salute you!

The Movie Meme

1. Which actor do you think hasn't gotten the attention he/she deserves?
That's easy: Jim Caviezel who should be up to his eyeballs in decent film offers since "The Passion of the Christ", but he has virtually disappeared.
Has anyone seen him since "I am David"?

2. What is your favorite movie line?
Olympia Dukakis in "Fried Green Tomatoes" said, at Julia Robert's character Shelby's funeral "that which doesn't kill us, makes us stronger". Pithy yet so true.

3. What is the absolute worst movie you've ever seen?
"The Rocky Horror Picture Show" hands down. Why that film had a devoted cult following is one of life's mysteries.

4. Is there a movie you hated when you first saw it and then later had to admit you were wrong?
I hated "Moonstruck" till I realized that the overacting was intented to mimic Italian opera, the central theme of the film. Once I got that, it has become one of my all time favorites.

5. What is your biggest guilty pleasure movie - the one you're ashamed you enjoy?
"The Exorcism of Emily Rose" you're not supposed to 'enjoy' exorcism movies, but it's good when the Catholics win for a change!

I will tag the following bloggers with this meme but if you want to participate, go ahead. I ask that you offer a link back here and that you tag three other people.
Consider yourself tagged:
Jean of Catholic Fire
Esther of A Catholic Mom in Hawaii
Elizabeth of The Divine Gift of Motherhood

My girls are on a brochure about Down sydrome

A press release from Concerned Women for America
State Director Anne Downey launches an informational resource for new parents
Washington, D.C. — Concerned Women for America (CWA) of New York today launched an international project aimed at reducing the 90 percent abortion rate for babies diagnosed with Down syndrome. This new project, developed in consultation with the major Down syndrome groups in America, makes available a free informational brochure titled, “When you’ve learned that your baby may have Down syndrome … There is help and hope!” The brochure offers reassurance to families facing a prenatal diagnosis and provides them with a list of resources and support groups to help them learn more about their baby’s opportunities. At the companion website, DownSyndromeBrochure.com¸ the brochure is available in English and Spanish for free download or for ordering of printed copies at a nominal charge. Eventually, CWA of New York intends to offer the brochure in many different languages and with country-specific versions, such as a French version listing agencies and resources in France.
The brochure is timely because of a December 2007 practice bulletin issued by the American College of Obstetricians and Gynecologists (ACOG) which states, “After the diagnosis of a chromosomal abnormality, the patient should receive detailed information, if known, about the natural history of individuals with the specific chromosomal finding. In many cases, it may be very helpful to refer the patient to a genetic counselor or clinical geneticist and national groups such as The National Down Syndrome Society (www.ndss.org) or National Down Syndrome Congress (www.ndsccenter.org) to help the patient make an informed decision.” The brochure will allow busy OB/GYN doctors and others to provide expectant mothers with easy-to-read information.The brochure features the photographs of children and young adults with Down syndrome and their family members. Anne F. Downey, Esq., State Director for CWA of New York, says, “The brochure features the faces of a number of children and adults with Down syndrome. Each of the persons featured in the brochure came to me in a special way and has his or her own wonderful story to tell. In the photos you can see the joy that these young people and their family members have. Just looking at them, you can see that there truly is help and hope.”Medical professionals, disability groups and others wishing to obtain the brochure in large quantities may contact State Director Downey for special arrangements.Concerned Women for America is the nation’s largest public policy women’s organization.
I submitted this photo for inclusion in this brochure. Our family does have a happy story to tell about life with a child with Down syndrome. I try to tell it here every day.
We had no idea how popular this subject would be when the brochure came out.
Isn't God's timing great?!

It's not a cat and it doesn't fish

We have been discussing the flora and fauna of our new neighborhood in rural Connecticut with the locals. We live in the Quinebaug-Shetucket River valley, dubbed the last green valley on the over developed East Coast. Gabbi, who is my city girl, said, not without a bit of irony, "leave it to you, Mom to find the last green valley".
It's a beautifully rural area which seems to have escaped the ravages of modern development, colonial era farms dot the landscape and tiny rural villages surprise at the bend of a meandering road. We are getting excited as fall colors begin to tinge the leaves, thinking of the joys of discovering a new pumpkin farm, and pouring over pamphlets about October harvest events and nature walks. This little corner of New England is one of those areas of this nation which has retained it's unique regional flavor, and I am often surprised at how different it is culturally from Long Island, which is only an hour south of here. But that's another post.
I was asked by a friend to discuss the animal which is reputed to prowl the woods beyond our home; the Fisher Cat. Reintroduced to cut down the Porcupine population (was that a problem?) this ill-tempered member of the mink family is a threat to domestic animals like cats and small dogs. I had heard of them from friends in Northern Vermont and New Hampshire, but now they are down here in Eastern Connecticut, and I was not happy to hear it. They are particularly aggressive, and don't seem to be frightened off easily by humans or dogs.
My girls are afraid to let the cats out at night, since Fisher Cats are nocturnal, and our neighbor described a deep wound one of his cats received after an encounter with one of these 'weasels with an attitude'.Yikes!
We may be overreacting, but we are suburbanites, after all, the country life is new to us!

Feast of Our Lady of Sorrows

Fr Dwight Longnecker has a beautiful meditation on why today's feast immediately follows the feast of the Exhaltation of the Holy Cross. Our Lady leads us by her example of sharing in the suffering of Our Lord, we follow her, carrying our crosses. See the beautiful collection of Marian art at Salve Regina.
I have friends who carried the contents of their desks out the door of Lehman Brothers in New York today. Please pray that they may see their current suffering as an opportunity to make up what is lacking in the suffering of Christ, and to trust their futures to Christ's mercy.

Morning Star Camp 2008

The beautiful camp videos are out for Isabella's two weeks at Morning Star Camp in Washington, NH. You can access week one here and week two here. The sisters certainly made some unforgettable childhood memories, all centered around the Holy Eucharist and Monfort Style Marian devotion. I especially love the second slide show with the candlelight procession for the Feast of the Assumption.
Morning Star Camp is run by the Slaves of the Immaculate Heart of Mary at the St. Benedict Center in Still River, MA.

Thank you for your prayers we've moved to CT

I have spent a week without the internet, up to my eyeballs in boxes. Things started to improve just a bit, then we were reconnected to the internet today, and I had over 4oo emails, so please excuse the brief post to thank all of you who prayed, by saying God has helped us past all the hurdles, and we are settling into our new home.
I came accross this irresistable post from Faith and Family Live about how little Trig Palin is the most influential lobbyist for pro-life causes ever.
That is the reason I started this blog; to let Christina's beauty speak volumes about the intrinsic value of all human life, no matter how many chromosomes you have.
Next Sunday, September 21st, a photo of Christina will be part of a slideshow in Times Square, New York City. The National Down Syndrome Society will be sponsoring it as part of their annual fundraising Buddy Walk in Central Park. We hope to make it to Times Square, with a camera to capture the moment.

The Birth of Mary

“As the dawn is a cause of joy after the darkness and gloom of night, so was the birth of Mary.”
St. Alphonsus di Liguori, The Glories of Mary, (Tan Books: 1978), 628.

HT Mary Vitamin

Friends, I want to remember the birthday of Our Lady since I am moving tomorrow, to our new house in Connecticut, YES in the middle of Tropical Storm Hannah (we have a truck rented; we're trying to outrun the storm!). Don't ask.

I always look for feast days near big events and I am so honored to be beginning a new life in Connecticut near our Lady's Nativity. Please keep us in your prayers.

Special Needs Moms; we have a friend in Sarah Palin

For me, a special needs mother, listening to Sarah Palin's acceptance speech at the Republican Convention; THIS was the takeaway line of the night:
"Last April, we were blessed in my family with a baby boy. Sometimes our greatest blessings are also our greatest challenges. (HUGE OVATION, everyone focused on adorable Trig sleeping in Daddy's arms) For Special Needs Parents: For years you have been working to make the world a more welcoming place for your children. I promise you, that if we win, you will have a friend, an advocate in the White House". (BIG OVATION)
Sarah had reached through the TV screen and grabbed my heart! I have been working so hard these two years, since I met Senator Sam Brownback, supporting the "Prenatally Diagnosed Conditions Awareness Act" only to see it tossed into the mix for partisan bickering. Now, I know that if Sarah Palin is elected, legislation like this will be taken seriously, and maybe, just maybe, the scandalous persecution of unborn babies with conditions like Down syndrome, aborted at a rate of 90% will end.
For this position alone, Sarah Palin has earned my full support. What kind of superpower are we, the wealthiest nation on earth, who had no room for the special needs child?
You can always judge a society by how it treats its weakest members. Thanks to Sarah Palin, the USA may emerge from this grave violation of civil rights, and once again like in the 1960's, give human rights to an overlooked segment of our population.

The Proverbs 31 Woman and industriousness

The Proverbs 31 Woman

10An excellent wife, who can find?

For her worth is far above jewels.
rare, precious

11The heart of her husband trusts in her,

And he will have no lack of gain.
trustworthy

12She does him good and not evil

All the days of her life.
kind
Her Character as a Wife
13She looks for wool and flax

And works with her hands in delight.
works joyfully

14She is like merchant ships; She brings her food from afar.
goes extra mile to get choicest goods

15She rises also while it is still night

And gives food to her household

And portions to her maidens.
disciplined

16She considers a field and buys it;

From her earnings she plants a vineyard.
enterprising, prudent with money

17She girds herself with strength

And makes her arms strong.
energetic

18She senses that her gain is good;Her lamp does not go out at night.
good steward

19She stretches out her hands to the distaff,

And her hands grasp the spindle.
diligent
Her Devotion as a Homemaker
20She extends her hand to the poor,

And she stretches out her hands to the needy.
compassionate, generous
Her Generosity as a Neighbor
21She is not afraid of the snow for her household,For all her household are clothed with scarlet.
provident

22She makes coverings for herself; Her clothing is fine linen and purple.
elegant

23Her husband is known in the gates,When he sits among the elders of the land.
influential

24She makes linen garments and sells them,And supplies belts to the tradesmen.
industrious
Her Devotionas a Homemaker
25Strength and dignity are her clothing,

And she smiles at the future.
poised

26She opens her mouth in wisdom,

And the teaching of kindness is on her tongue.
wise
Her Influence as a Teacher
27She looks well to the ways of her household,

And does not eat the bread of idleness.
manages her home

28Her children rise up and bless her;

Her husband also, and he praises her, saying:
praiseworthy

29"Many daughters have done nobly, But you excel them all."
distinguished
Her Effectivenessas a Mother
30Charm is deceitful and beauty is vain,

But a woman who fears the LORD, she shall be praised.
God-fearing

31Give her the product of her hands,

And let her works praise her in the gates.

Sarah Palin: should the mother of an infant be Vice President?

The thought occurred to me while I was rejoicing in Senator McCain's good taste: should the mother of an infant, much less an infant with Down syndrome be seeking even more responsibility than she already has?

You know I love her as a person, I posted about her back in April when her youngest son, Trig was born. I love her as a moral, pro-life, no-favorites politician. But should a Christian woman with a young infant be doing this?

Those of you who read this blog know how much of my time is invested in my children. A home schooling mother is very busy; add dozens of therapy appointments a month and a writing career, a teaching job and you have an overwrought mother with a cluttered home. My girls have expressed a desire to attend school, so I am making a move to Connecticut for good Catholic schools to alleviate some of this pressure, and focus more on writing.

For fifteen years, I have had to work in addition to mothering. I don't have a choice; my husband's siblings and parents in El Salvador depend on him for financial support, so I have to pitch in. When the girls were younger, I ran a preschool in my home. They had lots of friends, plenty to do; art, story time, outdoor play, field trips, etc. but less alone time with Mom. For the past 8 years, I worked part-time teaching English at a local college; they got more attention from Daddy, they went on bike rides and out to lunch at the restaurant down the road on the beach. Their relationship strengthened; but the house was a wreck when I got home from a five hour class on Saturday afternoon. I (usually) bit my tongue and tried to focus on my husband and children's happiness while I cleaned up, with their help.

Every decision has it's price. I think the mind of the Church on this issue is that Catholic women have a duty to exercise their prudential judgement on this. Elizabeth Foss rightly pointed out that soon to be Blessed Zelie Martin, mother of St Therese of Lisieux, operated a lace-making business out of her home. St. Gianna Berretta Molla worked as a Pediatrician while her children were young. The famous Old Testament feminine role model, the Proverbs 31 woman made cloth at home, sold it in the public square and brought both prosperity and honor to her family. Danielle Bean, Michele Quigley, and Heidi Hess Saxton edit good Catholic magazines while raising their children. My point is, that although these women are engaged in business activities, their family is their first priority. I know stay at home mothers whose volunteer or social activities encroach upon their mothering time.

We have to seek the will of God for our particular situation and in charity, refrain from criticizing one another. To correct a friend who is going astray in this direction, is the loving thing to do, but until you know the particulars of a working mother, please don't sit in judgement of her. I've been hurt by the judgements of fellow homeschooling mothers with more comfortable financial circumstances, who see all mothers who work as vain and materialistic.

I understand that stay at home mothers are tired of their vital role in raising children for heaven being mocked and this may account for a backlash against Sarah Palin. But I urge you to consider the powerful witness Sarah can be as Vice President. She can be a positive role model of a true feminist; pro-life, pro-family, faithful Christian, whose family life blends with her political career. Her husband is very supportive and isn't afraid of doing his share of child care; and we all know that this is crucial to the success of any working mother. I love when she described how she puts down the blackberry and picks up the breast pump. I would probably try to do both at once and make a hash of it!

Danielle Bean has quite a lively discussion on this subject going on at Faith and Family Live.

9/17 UPDATE: Elizabeth Miller has a great post on how Sarah Palin might be a source of unity for women on this issue.

Book Review: "Roadmap to Holland"

Roadmap to Holland
By Jennifer Graf Groneberg
292 pages
I have had the privelege of corresponding with Jennifer via her blog "Pinwheels" and am a great admirer of her literary talent. Now I admire her as a mother as well.

Those of us who give birth to children with Down syndrome have been likened to travelers to Italy who find that their plane unexpectedly lands in Holland. The title “Roadmap to Holland” is a reference to that famous essay by Emily Perl Kingsley, who worked for decades writing for Sesame Street and whose son Jason has Down syndrome.
She has for generations provided this invaluable wisdom for new parents of children with Down syndrome. In “Roadmap to Holland” we meet Jennifer, a new and compassionate companion on our journey raising a child who is both very different, and yet surprisingly similar to our other children.

Jennifer and her husband Tom had the perfect life; both writers, they lived on a peninsula on a lake in Montana; they worked in their home office down the hill from their home, surrounded by peace and tranquility of nature. Their life was enlivened by the joy of a young son, Carter. Just what inspired them to test fate by conceiving again? This question kept returning to Jennifer’s mind as the difficulties in her journey to Holland began to reveal themselves. Twin boys, Bennett and Avery and were born seven weeks premature with the daunting possibility of lifelong repercussions. Just when Jennifer thought the news couldn’t get worse, she was informed that Avery, her little blue-eyed boy with a full head of blond hair, had Trisomy 21, an extra 21st chromosome. Jennifer’s first reaction, like so many, was an urge to flee, leaving all the fears behind. She, however being the valiant woman she is, stayed the course, and, for months commuted to the hospital, pumping her milk round the clock, holding her babies by turns, caring for her older son, longing for a full night’s sleep, until, finally, her little boys came home, one by one to the little house by the lake.

Jennifer’s story is a vivid, day by day journal of some of the most devoted mothering in modern literature, tempered by her honest descriptions of her personal growth in acceptance of Avery’s diagnosis. Her vivid descriptions of each scene, draws us into her life’s journey so deeply that we are reluctant to see the book end. “Roadmap” evoked so many of my own fond and painful memories as the mother of a daughter with Trisomy 21, that I feel as if I could easily spend a quiet winter afternoon at the little house by the lake chatting with her by the fireplace, sipping tea as our children play at our feet.

Still searching for the spiritual underpinnings of life, Jennifer is not afraid to admit that she has not found all of life’s answers, yet she is powerfully articulate describing the beauty of what she has found; that life with three little boys, one of whom has an extra chromosome, is a blessing she never would have anticipated. She has been enriched by her experience in ways which, until this book came out, many other mothers could not appreciate: she cites the tragic statistic that 90% of expectant mothers whose unborn child is diagnosed with Down syndrome choose to end it’s life. Books like “Roadmap to Holland” provide support to mothers facing the daunting prospect of raising a special needs child; they know that they are not alone. They can pick up this volume; and enter into Jennifer’s world of challenges, tears, and triumphs, where, through sleep-hooded eyes; a grateful mother can still see the sun shine.

I recommend this book for mothers who are facing challenges, and seek companionship on their journey. Jennifer has an extraordinarily detailed description of the therapies available for our children, coupled with a complete appendix with resources for parents of children with Down syndrome. I hope that “Roadmap to Holland” joins “Gifts” on the bookshelves of obstetricians and genetic counselors who want to give their patients a realistic yet inspiring idea of what it’s really like to raise a child with Trisomy 21 in today’s world.

You are my inspiration!

I am really counting on them, and it's so comforting that around the globe, our family is surrounded by prayer. This is the universal Church.
Speaking of support, if you have time, go and see "Henry Poole is Here", a wonderfully inspiring film which shows the Church in a suprisingly good light.

I need your prayers for our move

Things are at a critical point as we approach our last week in New York, and we need your prayers for our move to Connecticut. Something tells me a lot of blessings await our family in our new home; it's the amount of stress we're going through at this moment.

This battle belongs to the Lord, and I leave it in His Hands, please pray with me.

Good news for those with Trisomy 21

Higher Education Act Passed
Congress has approved a bill to reauthorize the Higher Education Act. This act, which sets federal higher education policy for at least the next five years, will expand eligibility for grants and work study jobs to students with intellectual disabilities; authorize new model programs; and, infuse the principles of Universal Design for Learning (UDL) into the higher education law.
Summary of provisions for students with intellectual disabilities
Allows students with intellectual disabilities, who are attending programs designed for them in higher education, to be eligible for the first time for Pell Grants, Supplemental Educational Opportunity Grants and the Federal Work-Study Program.
Authorizes the development and expansion of high-quality, inclusive model comprehensive transition and post-secondary programs.
Authorizes the establishment of a coordinating center for the new model programs. This center will provide technical assistance, evaluation, and development of recommendations for model accreditation standards as well as outreach and dissemination to postsecondary programs, families and prospective students.
Ensure equal college opportunities for students with disabilities
Establishes a national center to provide support services and best practices for colleges, students with disabilities, and their families.
Helps colleges recruit, retain, and graduate students with disabilities and improves education materials and facilities.
Universal Design for Learning (UDL)
The Higher Education Opportunity Act contains numerous provisions regarding the preparation of educators in early childhood, elementary, secondary and postsecondary education settings to use the principles of UDL in their instructional practices. UDL provides flexibility in the ways information is presented, in the ways students respond or demonstrate knowledge and skills, and in the ways students are engaged. It also reduces barriers in instruction, provides appropriate accommodations, supports, and challenges, and maintains high achievement expectations for all students. The recent UDL efforts were led by a task force headed by Ricki Sabia, Associate Director of the National Down Syndrome Society Policy Center, and 24 general education and disability organizations, including the National Down Syndrome Congress. For more information on the Task Force and Universal Design for Learning see www.udl4allstudents.com and www.cast.org.
The National Down Syndrome Congress applauds the leadership and hard work of our partners at the NDSS Policy Center on this initiative. In addition, we recognize and appreciate the leadership and bipartisan spirit of the following members of Congress who were instrumental in the passage of this bill: Representative Pete Sessions (R-TX), who is also the father of a son with Down syndrome; Senate Health Education Labor and Pensions Committee Chairman Kennedy (D-MA); Ranking Member Enzi (R-WY); House Education and Labor Committee Chairman Miller (D-CA); Ranking Member McKeon (R-CA); and, Senator Mikulski (D-MD). For more information on the Higher Education Act, contact Madeleine Will at mwill@ndss.org.

Isabella had a great time at Morning Star Camp

I was very hesitant when Isabella, who was returning to Morning Star Camp this year without big sister Gabbi, wanted to stay for two weeks.I thought that this was a very long time for a homeschooled girl to be away from her family. Not that I didn't trust the Sisters implicitly, I have seen few religious with a deeper love and appreciation for the needs of children. I couldn't wait to hear of the lessons in virture, sports, woodlore, crafts, friendship and the Faith which Isabella would bring home from her stay at camp. Plus, the sense of pride and independence which comes from sticking it out during inevitable bouts of homesickness.
I decided to allow Isabella to stay the extra week when we arrived at the Camp, and she immediately disappeared to find last year's friends, leaving me with her bags. She quickly found her cabin, got her things, and installed them in her brand new bunk, and returned to lobby for the second week. I paid the fee, and enjoyed a tour of the spanking new Monfort Retreat (see a slideshow of the construction here) located on top of a mountain in Washington New Hampshire (all right, it's technically a hill, but, to a flatlander like me it's a mountain).

Buildings are log cabins, and we watched them going up by means of beautiful slide shows set to music during the school year, so I was anxious to see the nearly finished product. The cafeteria is cavernous, with high ceilings dotted with rustic chandeliers, and a piano which fills the room with music. Excess noise is absorbed by the log walls, and a large covered outdoor eating area ensures that the girls will be in touch with the natural beauty of the woodlands, no matter what the weather. The log chapel will have arched screened windows, looking out on the quiet lake, and the river which feeds it. A log crucifix over the altar is reminiscent of the one Blessed Kateri Tekakwitha may have made for herself in her long house, not too far away in upstate New York. I breathed in the moist balsam-scented air, one of my favorite smells in the world, and enjoyed the peace of the place. Nothing to hear but the sounds of nature, punctuated by the delighted squeals of friends reuniting and discovering their new campground. Three circles of fragrant new log cabins named after saints greeted the girls.


It was hard to tear myself away from this piece of heaven, but the sisters assured me that plans for a mother's retreat were in the works, so with that promise, and a good push from Isabella, who wanted her adventure to begin, Gabbi, Christy and I left Camp Morning Star to begin the long ride home.
My cell phone had no reception at the camp, and that had been our planned means of communication, so my contact with my middle daughter was limited to two brief phone calls, where she sounded so animated about her adventures in camp, that my missing her was well worth it. Her father was so intrigued by my vivid descriptions of the primeval beauty of the rustic camp set deep in the pine woodlands, that, despite painful sciatica, he offered to drive up to retrieve his nature girl at the end of the two weeks. We left before dawn, using the road Gabbi and I mapped out to go home, and were the second family to arrive at Camp, to the utter shock of Isabella who expected us to be late. She was two shades darker, and that included her clothing, died deep brown from the black mud left by the construction around the camp, but radiantly happy. We helped her clean up the cabin, retiring the mattresses for the season, checking out her upper bunk (which she did NOT fall out of) and admiring the names of the cabins. Hers was Blessed Kateri. Each morning, at reveille, if her cabin didn't show up in their PJ's for prayers, they would be a sister, calling, "Blessed Kateri, time to get up!"Daily Latin Mass and rosary marked their days, and everyone wore their scapular. Girls were cheerfully helping the sisters clean up, and carrying one another's bags to their parent's cars.

Isabella and I took Christy for a tour of the lakeshore, where the rowboats and kayaks were launched, and where, in the future, there will be a beach. I loved seeing her familiarity with the camp, which, only two short weeks ago had been uncharted territory for her. I had been worried that the suburban girl might be overwhelmed by the north woods, but Isabella was in her element in the woods, much like her mother at her age. I always dreamed of a vacation like Isabella has had; adventure in nature, camaraderie and the Faith all blended into two unforgettable weeks.


I'll let Bella tell you about what she did when she gets a chance to write, and she will show you her fascinating photos of nature and girlish antics.
None of them, I regret to say, are of her, since her camera was packed deep in her bag when we arrived. I forgot to ask for it, since I was so taken with the sheer beauty of the camp and wanted to experience it as fully as possible before it was time to leave. I'm sure Isabella will show up in the camp slideshow, which we'll be linking to here.

Mr C is going strong at 70

He is teaching the medical community to up their expectations of life with Down syndrome.
Mr. C is 70 and has no signs of dementia.
What's his secret?
In the world of Down syndrome, 'Mr. C' is a rarity. A real person whose progress has been tracked for the past 16 years, at seventy, 'Mr. C' has well surpassed the average life expectancy of a person with Down syndrome, currently in the late fifties, but in the teens when 'Mr. C' was born. Further, 'Mr. C' does not exhibit clinical symptoms of Alzheimer's disease, which is almost a given for people with typical Down syndrome over 65 yeas of age. 'Mr. C,' while remaining nameless, puts an optimistic face on the future of aging for people with Down syndrome, as scientists ask the critical question: What is it about 'Mr. C's' individual characteristics and experiences that have made him not only live longer, but also age successfully despite having Down syndrome?
"'Mr. C' paints an optimistic picture for people with Down syndrome who are aging, and says that an ordinary person with Down syndrome ought to be able to make it to seventy, once you find 'Mr. C's' secret," explains Dr. Sharon J. Krinsky-McHale, lead author of the study and Research Scientist at the New York State Institute for Basic Research in Developmental Disabilities.
Read the entire story here.

The power of words to heal and hurt

Spain: Down Syndrome kids aborted

This explains the tragedy of what the world loses when one of our lovely children is aborted.

I'm so proud of Joey's Mom!

She as part of the Connecticut Down Syndrome Congress organized the protest of "Tropic Thunder" in this article.

Book Re-readers unite!

OK, I know you're out there! There are readers of this blog who re-read books. Faith and Family Live blog has a post for you.
I did, before I had three blogs and three kids. . . and it was one of the best ways of learning grammar and literary style. I grew up when teaching grammar was out of style (is it back yet? I homeschool, so I'm out of touch with public educational trends).
From learning the difference between subject and predicate in second grade to my monumental struggles to understand indirect object in seventh grade French (it would have been easier to learn in English first, NON?) I had NO grammar in grammar school. I even got a Masters in Teaching English as a Second Language without a single course in grammar. Oh, I paid for a grammar course, and bought a $100 grammar book, but the professor was bored by teaching grammar and preferred to chat during class time. I was shortchanged on grammar.
But, like my Irish gran who wasn't able to get as much formal education as she would have liked,
I read, and I read, and I read. CS Lewis, Alcott, Austen, Laura Ingalls Wilder, James Herriott, and when I was 13 I read 1037 page "Gone with the Wind" in a record 3 days, while my worried mother brought meals to my room. It was actually due for re-release in my local movie theatre, and besides, I was enthralled by the story.
These and many other wonderful authors taught me grammar and literary style. Plus, living through a great story more than once is one of life's great pleasures.
If you like my writing, now you know my secret; READ READ and RE-READ great writers!

"It's Just a Word"

I had to express my thougths on today's release of "Tropic Thunder", so I wrote the editorial "It's Just a Word" for Catholic Exchange.

Update on offensive film: "Tropic Thunder"

Help The Arc Fight Offensive Portrayal of People with Intellectual Disabilities

Background

Tropic Thunder is an action/adventure/comedy scheduled for nationwide release on August 13 and promises to be one of the blockbusters of the summer. DreamWorks is the film's producer and Paramount is its distributor.
The premier will be held in Los Angeles, California on Monday, August 11.The film features popular actors Ben Stiller, Robert Downey Jr. and Jack Black as self-absorbed actors filming a big-budget war movie on location. Through a series of freak occurrences, they are forced to become the soldiers they are portraying. Stiller plays Tugg Speedman, a fading action star who earlier failed in his bid for an Oscar as "Simple Jack," a man with an intellectual disability.

"Simple Jack" is featured as a film-within-a-film, with Stiller sporting a classic institutional bowl haircut and bad teeth (see poster below). The film within-a-film's slogan is "What he doesn't have in his head, he makes up for in his heart." A satirical plot synopsis quotes a critic as saying that Speedman's Jack was "one of the most retarded performances in cinema history."
Status
A small number of disability advocates was able to screen the film on Friday, August 8. Their assessment of the film was that it was far worse than anything they could have anticipated. According to David Tolleson, the Executive Director of the National Down Syndrome Congress who attended the screening, "it provides real ammunition for cruelty" especially for the film's target audience of adolescent males. "Not only is the Simple Jack character highly central to the film's plot, it is portrayed in the most demeaning way," according to Tolleson.
In perhaps the single most offensive scene in the film, Matthew McConaughey, who plays a Hollywood agent, speaks to the film's main character who wants to adopt a child. "Well, at least you still have a choice. I'm stuck with mine," states McConaughey while pointing to a photograph of his teenage son who appears to have an intellectual disability.There has been mounting outrage from the disability community as the film's content is gradually becoming known.
For excellent coverage of the issue, see Patricia Bauer's Column and related posts. Hundreds of comments have been posted on the blog expressing outrage about the movie. Representatives of a number of national disability organizations, including The Arc's Executive Director Peter V. Berns, met with DreamWorks and Paramount studio executives in Los Angeles, California on Wednesday, August 6. The purpose of the meeting was to express concerns, request a viewing of the film, and discuss possible solutions.
Take Action
Depending on negotiations with the studio executives over the weekend, The Arc and its coalition partners may be calling on its membership to take appropriate action.
Such action includes a protest at the premier in Los Angeles on August 11 and/or national boycott when the film is released on August 13. Stay tuned......

My horsewoman is away at camp this week

She was so delighted to have finally arrived at the new Morning Star Camp in Washington, NH, after viewing the construction of the new log buildings all year, that she begged me to leave, so I wouldn't interfere with her camp experience, though I was merely enjoying a tour of the beautiful chapel. I took that as a good sign.
Here's a slideshow of the new camp in Washington NH, on a hidden lake deep in the woods. It's breathtakingly beautiful, I can't wait for their first mother's retreat scheduled for next summer!

But I miss my little outdoor girl, so I've been working on a montage of her horseback riding birthday party last May at Nativity Riding Academy of Ridge Long Island, NY.

I missed posting on St. John Vianney

Please understand if posts are sparse; I am in the midst of pre-moving rush. We plan to move to CT in time for school at the Academy's opening on August 27th. WOW! That's soon!
And my 9th grader is still finishing Seton!
So, I will link to Elena's wonderful post on St. John Vianney since I don't think I could do better anyway!

Educating teachers about Down syndrome

Here is a program in Omaha which trains one teacher per school to be an expert in educating children with T21.
The Down Syndrome Guild of Greater Kansas City started the program in 2004 after finding that both parents and teachers were nervous about educating students with Down syndrome.
"We thought that we need to get everybody together and create a collaborative, cooperative, welcoming environment so everyone's not anxious," said Amy Allison, executive director of the guild.
Read the entire story here.
HT Omaha World Herald

"Tropic Thunder" to meet with Down Syndrome reps over offensive film

For the time being the viral site for "Tropic Thunder" has been shut down, pending a meeting with Special Olmypics and Down Syndrome Association officials. The story of actors who play "retards" in a film is patently offensive to those with disabilities, and I don't see how the offensive parts can be removed from the film, which is a crude comedy written, directd and acted by Ben Stiller.
This is a swift and temporary victory for advocates for the mentally disabled. But the fim is still going forward. Let's keep the pressure on to stop the offensive nature of this heartless film mocking the intellectually impaired.
Read the entire story here.

I just joined the Extraordinary Moms Network

Here is my first post. See the image in my sidebar.

Summer bounty from our garden

We ate these tri-color snap beans while still warm from the sun.

Yumm!

Voluntown Firehouse hosts Chicken Barbeque Fundraiser for the Girard Family

At 4PM, as I drove to the firehouse for the barbecue, I was surprised by the traffic jam created by the hundreds of attendees as the barbecue began. My amazement grew upon entering the firehouse, it was packed with Chinese auction items, handicrafts and baked goods made by loving hands. There was a joyful sense of purpose in the crowd who were united in their purpose to help a family touched by tragedy.
As we walked up to the line for our chicken, I was greeted warmly by Jacqueline Girard, who remembered me from my recent trips to the Academy of the Holy Family, where she will be a sophomore. My oldest daughter Gabriela will be entering the same class, as she begins school there this fall. The girls chatted about upcoming school activities, and I was pleased that Gabriela now has a friend in her new school.
The rain which had been threatening cleared, a hot sun broke through, and as quickly as new tables were set up, more and more families sat down to enjoy a generous portion of savory chicken accompanied by fresh rolls, cole slaw and potato salad. I sat with Albina and Joe, a couple from Norwich, who shared about their work in their home parish. I told them about my upcoming move to Canterbury, and how the spirit of joyful cooperation I saw at the firehouse that evening reaffirmed my decision to join the friendly community of laypeople who are involved with activities at the Friary. Friars moved through the crowd, helping to clean up, and greeting participants. A band played popular favorites, and attendees lingered to enjoy one another's company in the summer twilight. The chicken barbecue was a resounding success.

The Girard family was encircled with love from the community at this difficult time, and we hope to participate in future fundraisers. If you would like to contribute to the fund for the family please send donations to:
Bank of America
590 West Main St (Rt 82)
Norwich, CT 06360

Books for Dessert: A Book Club for Intellectually Disabled is catching on

What intellectual stimulation do intellectually disabled adults have to look forward to after high school? Now, starting at a Long Island library, such clubs are spreading like wildfire.
When Jamie Comer graduated from high school at age 21, gone were the in-depth assignments and hours of homework that had long challenged him.As Comer, who has Down syndrome, began to gradually lose critical thinking skills without the aid of vigorous schoolwork, his mother struggled to find opportunities to keep him mentally sharp."People have always assumed that people like Jamie don't really have opinions on anything remotely complex," said his mother, Nancy Comer, 64, of Port Washington. "They're just expected to work and be happy."
And, in true parent advocate style, Nancy started a book club for her son.
Well done, Nancy!
I hope that by the time my kindergartener is old enough that such clubs are in every library.
Read the entire article here.
HT Newsday