Who wants this pre-born baby with Down syndrome?

The answer: nearly one thousand people from around the world. Here's the story.

When I read the email, my pulse quickened. As the mother of an eleven-year-old girl with Down syndrome, I oftenhelp parents cope with the prenatal diagnosis of Down syndrome. This email was urgent,

“There is a couple in another state who have contacted an adoption agency looking for a family to adopt their Down syndrome unborn baby. If a couple has not been found by today they plan to abort the baby. If you are interested in adopting this baby please contact Fr. VW IMMEDIATELY. We are asking all to pray for this baby and the wisdom that this couple realize the importance of human life and do not abort this beautiful gift from God.”

Read the entire story here.

Is Shutting off the Third Copy of the 21st Chromosome an Insult to My Daughter?

After what was billed as an amazing breakthrough, a harbinger of hope, researchers at University of Massachusetts managed to 'turn off'' the third copy of the 21st chromosome in a petri dish, many parents who love their children with Down syndrome are feeling that this line of research is ultimately a rejection of the children they love so deeply. Its easy to understand that point of view, after all, the world harshly rejects the great majority of unborn babies with Down syndrome, aborting them at a rate of 75-92%, with new tests like MaterniT21 threatening to raise that already high rate. They have learned to love their special children as they are, delays, medical needs and all, and feel strongly that the type of research which 'shuts off' a chromosome will somehow alter their lovable personalities. I love these people and deeply admire their devotion to their beautiful children, its a fundamental value which we share, yet I see things differently.

Once in the middle of a live TV interview, Canadian show host (and ardent pro-lifer) Michael Coren asked me what he described as a difficult question, "Would you, if you could, take your daughter's Down syndrome away?". I tried not to stare into the remote camera like a deer in the headlights, but he had caught me flat footed. I fumbled for an answer, not wanting to offend those folks I just described,  answering that I knew that Down syndrome was part of who she was, but that if research advances were safe, I could see myself using them to help her be able to speak, that being able to know her thoughts would be a great blessing. I sought a clearer answer, and perhaps there is none, but I will express my thoughts on this controversial topic anyway. Let's see if it gets me into trouble.

The third copy of the twenty-first chromosome caused my daughter's brain to become muddled in her fifth year of life. She was putting words into little short phrases and happily engaging those around her. We had every reason to believe that her IQ of 69 indicated that she would benefit from inclusive education and would progress, perhaps more slowly than her typical peers, but surely would be able to read, speak and make friends in order to live a happy, fulfilled life. We moved from Long Island to Connecticut so that she could benefit from the inclusive classrooms there. Life was full of promise.

By the second grade, it became clear that this dream was not becoming reality. Christina spoke less and less, struggled to maintain interest in her surroundings, and reading was progressing much more slowly than we anticipated. At her pediatrician's insistence in third grade, I began to seek evaluations from well known speech and education professionals to understand why my daughter was losing language. We found little to encourage us that she would change, and the school put her into a resource room for students with autism, although she has never been diagnosed with autism. The University of Connecticut Speech and Hearing Clinic evaluated her and worked with her for four months with some success, saying she had a language processing disorder. Her neurons in the speech center of her brain do not connect. She has lost many connections which used to exist, and the vocabulary of a hundred words she had has nearly disappeared. What is causing this? The extra copy of the 21st chromosome which is over expressed, like a broken record, sending out signals which confuse my daughter's speech center, isolating and confusing her and cause her to turn inward, watching DVDs for hours and playing with her stuffed animal, her only friend.
Her IQ is now 20.
Down syndrome did this to her

How does her future look right now? Bleak, unless there is a medical breakthrough. Only her family or those who can understand Touch Chat on the Ipad can communicate with her. Children reject her odd mannerisms as she tries to communicate with them. She often resorts to throwing things to gain attention, and there has been talk of medicating her to control these behaviors. I am heartsick.

Why shouldn't I be thrilled to know that in ten years there may be a medication or gene therapy which can repair this terrible damage to Christina's brain?
 I want her back, the happy smiling little girl who sang part of "Old MacDonald Had a Farm" with her daddy in a home video when she was five.That video makes me cry now. I miss the little girl who wanted to be best friends with everyone she met, whose future was promising.
My daughter is trapped by Down syndrome's mistaken messaging in her brain. Do I love her as she is, even if she never speaks again? Of course I do! Do I want her to speak with all my heart so that she can find more happiness in the world, in friendships, reading, and fulfilling work?
Of course I do.

So, excuse me if my heart skips a beat when I hear about medical breakthroughs which might bring back my daughter, my true daughter to me. She is not the sum total of her chromosomes, Christina is far more than that, but she is deeply affected as we all are by her genetics. They do not affect her soul, but who else but those of us who love her will see the beauty in that soul if she can never speak again?

Charlotte Saved the Party for Me

This is a true story told from the point of view of my daughter Christina when she was eight. She is 11 now.
It was a creepy place, that Haunted Mini Golf. The walls were black, fluorescent ghosts floated everywhere, scary music was playing really loud, and stinky smoke was coming up from the floor. Yuck!

I stopped at the front door, thinking maybe I didn’t want to go into that noisy place. Kids were screaming in there! I hate dark, noisy places like movie theatres. I thought, “How would a birthday party in there be fun anyway”? I tried to back out, but my mom held my hand tightly and I knew that if she was going in, I had no choice. We walked in, and, as we stood in the entry, our eyes got used to the dark, but Mom and I didn’t recognize anyone, so all I wanted was to get out of there, and go home. I started pulling on Mom’s hand as I walked towards the door. I started to cry.

Suddenly, out of nowhere, I saw Charlotte. She left her party in a quiet room when she saw me looking scared. “Its okay” she told me, taking my hands with a big smile on her face, “all our friends from class are here, come and see.” Charlotte led me into the party room, and soon I saw all our friends from Mrs. Driscoll’s second grade class. They were playing a cool game of glow-in-the-dark mini golf, and gave me a hot pink golf club which matched my pants. I hit the ball into the little house after a few tries, and I wasn’t afraid any more. Then we got some glow-in-dark bracelets and danced to music we like at school, the bracelets made circles in the dark. Next Charlotte’s mom served pizza and soda. Next we ate some chocolate cupcakes with green crunchy sprinkles. It was fun to be with my friends even in that weird place, and I had a great time with Charlotte, who played with me the most of anyone. I was really happy she saw me and helped me come inside her party. Next time she had a party, I wanted to go, because she is really nice. She doesn’t care if I get scared sometimes or that I’m shy and have trouble making friends.

I am eight years old and have brown hair and brown eyes. I have two older sisters and we have three cats, one dog, and six chickens at our house. I like to wear my pink-polka-dot crocs every day to school, because they are comfortable and easy to put on. I am supposed to wear glasses, but I don’t like them very much. My favorite colors are hot pink and purple.

Most people notice how I look different, and how I can’t talk like everyone else. Sometimes it’s hard to remember the words I want to say, so I use my IPad and sometimes I talk with my hands. Not too many kids understand me, and it makes me embarrassed when they stare at me. Once, in the library, two kids asked my Mom what country I come from, because I talk differently, so she told them don’t come from another country, I just have Down syndrome. Sometimes kids at school don’t know what to say to me because I don’t speak very well, so they go and play with someone else. Ouch, that hurts my feelings! I just want to be part of the group when everybody’s playing a game. Why can’t I just play with everyone else?

That’s why I like Charlotte. She doesn’t care if I forget my words, or I look different. She doesn’t laugh at me when I can’t run like the other kids or when I trip and fall. At recess, I can’t go on the playscape because my neck might get hurt. It makes me sad because I used to play follow-the-leader with all the kids together. Charlotte comes and plays catch or hula hoops with me. Sometimes she brings a friend with her and we all play hopscotch. Those are the best days. I like Charlotte very much. I wish more kids were like her. When she smiles, my heart is happy and I smile too. Charlotte saved the party for me, and she is my best friend. I wish there were more kids like Charlotte; the world would be a happy place.

Company d "Who I Am" Music Video

CAMILO Sesto---((Un mundo mejor---))tribute to his son with Down syndrome

Functional MRI at University of Utah gives researchers great insight into how brains with Down syndrome function

Before we can repair the neuronal connections in the brain which are not functioning, we have to see where they are. This new use of Functional MRI has the potential to pinpoint the over-connectedness or lack of connections between different parts of the brain of a person with trisomy 21.
Watch the news video here.
 http://www.ksl.com/?nid=148&sid=25547848&fm=most_popular#ooid=tmeWdiYzpM_o889SIR9KgktgU6NqSKJs

The Tragic Death of Robert Gensiak, 32, with Down syndrome

I started this blog to share the joy of raising a child with Down syndrome, but sometimes my heart isn't joyful.  The tragic realities of those who cannot love people with Down syndrome often haunt me, I can't sleep tonight because I read this news story of a man with Down syndrome named Robert Gensiak, age 32 who died of neglect, while living with his mother and two sisters.  My heart is broken.

For two years, Robert Gensiak's world was his bedroom.
It was there, his family kept him from doctors, even when his skin cracked and bled and open sores formed from being forced to stay in his child-sized bed covered in feces.
And it was there, the 32-year-old Taylor man with Down syndrome wasted away to 69 pounds because his mother and sisters were starving him to death.
On Wednesday, about three months after Mr. Gensiak died, police charged his mother, Susan Gensiak, 59, of 12 Williams St., and two sisters, Joan, 35, and Rebekah, 24, with murder.
Read the complaint HERE"This is the worst case of neglect I've seen the last 26 years," said Lackawanna County District Attorney Andy Jarbola at a press conference Wednesday. "This family, the mother and two sisters, basically let this young man rot to death."
Mr. Gensiak had been weakening and could not walk without assistance by the time the family called an ambulance on March 19 at the urging of his doctor, Paul Remick, D.O., whom they had not taken Mr. Gensiak to visit for two years. Mr. Gensiak was taken to Regional Hospital where doctors said he had severe psoriasis associated with hypothermia. His body temperature was only 92 degrees.
He died March 20, and weighed just 69 pounds, police said.
An autopsy conducted by forensic pathologist Gary W. Ross, M.D., revealed an extreme case of neglect. Autopsy photos show his skin was a sickly yellow with cracked areas that had oozed with blood and fluid. Open sores pockmarked his body, so extreme in spots that his bone was visible. As a matter of taste, The Times-Tribune is not publishing the photos.
The remaining teeth he had were loose and ready to fall out. Lice covered his head. Dr. Ross found no food or significant fluid in his stomach.
"It's amazing to me that anyone could allow someone to go through this type of pain and torture," Mr. Jarbola said.
His official cause of death was sepsis, due to the breakdown of his skin, plagued by a widespread infestation of Norwegian scabies. His open sores and malnutrition also contributed to his death, Dr. Ross said.
Lackawanna County Coroner Tim Rowland ruled the manner of death as homicide due to neglect.
The house itself did not appear overtly dirty, but it was cluttered, investigators said. At a glance, there would be no indication that there was anything seriously wrong.
But when investigators opened the back bedroom where Mr. Gensiak was kept in seclusion, an overwhelming wave of human waste washed over their sense of smell, Lackawanna County
Detective Castellani described Mr. Gensiak's room as a scene of utter filth. The child-sized bed he had to sleep on was covered in fecal stains, as was a chair he would sit on.

Robert's mother hadn't taken him to the doctor in two years, saying she had no transportation, and her only concern was to ask if his SSI checks would be discontinued after his death. There is no excuse for these three women to treat their sibling with such unimaginable cruelty. They are all in prison tonight, three months after Robert's terrible death. Robert is resting in the arms of the Lord tonight, and I think he is asking God for mercy on his family. That's what people with Down syndrome do. They give love unconditionally. They are prodigious givers, they do not take what is not theirs, they show love openly and do not treat others cruelly. The family of Robert Gensiak are the handicapped ones. They are without functioning hearts. 

Tonight as my daughter Christina slept, I prayed the Rosary for this situation and all those people with Down syndrome who are suffering in silence as Robert did. As I prayed the Rosary,  I took the psoriasis medication we bought for Christina, and, as she slept, and I anointed her scabs (many times she won't allow us to do this while she's awake). I was giving her the tender care poor Robert needed so desperately and never received. I felt as though I were touching the wounds of Jesus, and indeed I was, as He said, "whatever you do for the least of these, you do to Me."

Jesus, teach us to love those whom You have entrusted to our care. Teach us to serve them in love and tenderness, and with sacrifice not self interest. Please have mercy on the vulnerable people with Down syndrome like Robert Gensiak and Ethan Saylor and teach us to love them as they love us. 

If you see abuse like that suffered by Robert Gensiak, do the right thing, call 911. 

New Clinical Trials Offer Hope for the Future of Those with Down Syndrome

When Dr Jerome Lejeune discoverd trisomy 21 in 1959, the cause of Down syndrome, he intended to focus research in how to prevent the third copy of chromosome 21 from causing the congenital defects associated with Down syndrome. Tragically, the science was hijacked by an an effort to 'prevent' birth defects, in which researchers paired the karotype of trisomy 21 with emerging technology of amniocentesis, and the first prenatal test came into being.
 Shortly thereafter, the first abortions of a babies with Down syndrome took place in the early 1960's while abortion was still illegal in many states.As it is today, these tests were billed as 'lifesaving interventions' when they led to the death of thousands of babies with Down syndrome. It seemed that science did not count those lost lives in calculating the value of prenatal testing.
 This horrified Dr Lejeune, who intented to improve the situation of the person with Down syndrome who at the time were consigned to lives lived out in dreary institutions where they were not educated, but merely warehoused.  He envisioned a similar supplement taken during pregnancy to mitigate the effects of Down syndrome on the developing baby.It was the same Dr Lejeune who helped bring attention to the efficacy of folic acid in preventing neural tube defects when taken in pregnancy, so he had every right to expect this.

 Instead the 'cure' was to kill the child through eugenic abortion, abortion done to certain babies because of their genetic diversity. And in its early days, this was touted as 'lifesaving' since previously, women were counselled to abort if they were close to forty simply based on statistics saying that their chances of giving birth to a child with Down syndrome was elevated (around age 40 the chances are around 1%, hardly high risk).
This begs the question;
What kind of medical intervention kills rather than cures the patient?

 Dr Lejeune said, "Again and again we see this absolute misconception of trying to defeat a disease by eliminating the patient! It's ridiculous to stand beside a patient and solemnly say, 'Who is this upstart who refused to be cured? How dare he resist our art" Let's get rid of him!' Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patients side, always."

No attention was given to helping mitigate the effects of Down syndrome in living children. It as considered impossible, and frankly, not worth the effort. Parents like me who chose to carry our babies with Down syndrome to term were told that the only 'solution' was prenatal search-and-destroy. The Final Solution. There was virtually no research being done in Down syndrome. Dr Lejeune was one of few researchers who was seeking a cure. He said, "I see only one way left to save them, and that is to cure them. The task is tremendous, but so is hope."

Now science has taken a different tack, thanks in part to parent advocacy and leaders like Dr Brian Skotko Pediatrician at Massachusetts General Hospital Down Syndrome Program, bioethicist Mark Leach,   Rep Cathy McMorris Rodgers, founder of the Congressional Down Syndrome Caucus, Down Syndrome Research and Treatment Foundation, and the Jerome Lejeune Foundation which supported the research I note below, and my own KIDS Keep Infants with Down Syndrome.  

Without their insistence that our kids deserve better than, immense and hopeful progress has been made. Now clinical trials of a new substance RG1662 in Roche Labs is showing great promise to improve the lifestyles of people living with Down syndrome. The National Catholic Register reports;

A cautious Roche spokesman, neuroscientist Dr. Luca Santarelli, said in a statement, “Our drug may offer a novel therapeutic avenue to treat the cognitive deficits in people with Down syndrome, enhance their communications skills and ultimately help them have greater independence in their daily lives.”

http://www.ncregister.com/daily-news/new-treatment-could-improve-thinking-memory-in-people-with-down-syndrome/

For the first time since Dr Lejeune's discovery in 1959 there is major scientific effort invested in saving the lives of those with Down syndrome, and maybe someday, when a woman faces a prenatal test which tells her that her child has an extra chromosome, she will have a positive response based on  hope for scientific discoveries like these,  rather than a fearful one based on outdated stereotypes.

Making a Gift of Yourself: The "Blessed, Beautiful and Bodacious" Blog Tour

We still buy the lie. Women are told that if they want to be successful in the world, they have to be more like men, or like a how-to-succeed-in-business stereotype. Aggressive, detached from commitments; and self serving. No softness, no vulnerability, and certainly no thinking of others. We have to put ourselves first or we will never succeed and be fulfilled. Its in every women's magazine, in daytime talk shows, self-help books and on the web. We have to put off having children and getting married, putting our work lives in first place above all, before our marriage. That will bring us happiness, they promise.Women wait so long to get married that they often miss their opportunity to have children and pursue costly IVF procedures in a desperate attempt to 'have it all'.
We see this model of success at all costs in Hollywood, yet what do the biggest starlets long for, the ones who have it all, fame, money, the best roles, the perfect body and the enviably handsome man? They want time off from Hollywood to have children, to have a private life where they can devote themselves to those they love, their children and their husband.
That should tell us something.
The desire to be receptive to love and to give of ourselves completely in love is built into the female heart. It is the key to fulfillment as a woman, no matter what role you play in the world. Pat Gohn in "Blessed, Beautiful and Bodacious; Celebrating the Gift of Catholic Womanhood" takes the reader by the hand and gently talks to her inmost soul where these desires lie ignored, gently coaxing the reader into allowing her innate femininity flourish, and blossom into authentic womanhood.
Using down-to-earth, inspiring stories from her own life, Pat demonstrates how women can learn the ironic truth; that humility, receptivity and generous self-giving do not render us powerless, they are the keys to unlocking God's powerful grace in our souls. Pat describes how Mary is the quintessential example, she humbly received Christ into her womb by the most generous act of self-giving possible, and the world was forever changed as a result. The humblest "handmaid of the Lord" became the most revered and respected woman of all time "all geneterations shall call me blessed".
I was moved by Pat's honest personal stories of how she evolved from a "I am woman hear me roar" feminist to the authentically Catholic, happy, fulfilled, self-giving woman she is today. She overcame tremendous challenges in her life and, thanks to friends who built her up and mentored her, she grew in her ability to love and give of herself.
Its that warm mentorship which makes "Blessed, Beautiful and Bodacious" the must-read self-improvement book of the year.
 Here's a few words from Pat from Chapter Five: Making a Gift of Yourself. . Listen here.

Reflect and share on this phrase from Vatican II:

"Indeed, the Lord Jesus, when He prayed to the Father, "that all may be one. . . as we are one" (John 17:21-22) opened up vistas closed to human reason, for He implied a certain likeness between the union of the divine Persons, and the unity of God's sons in truth and charity. This likeness reveals that man, who is the only creature on earth which God willed for itself, cannot fully find himself except through a sincere gift of himself." (Gaudium et Spes, par. 24.)

Leave your comments below for a chance to win a copy of Blessed, Beautiful, and Bodacious.The drawing will be on April 26. 

Christina's Smile #4 Original By JimVanNewKirk

Woman with Down Syndrome has a Cinderella Wedding

The Pope and a disabled boy teach lesson about love.

On Easter morning I was watching the Easter Mass with Pope Francis afterwards he rode around St Peter's Square greeting the crowd. He was shown a little boy with cerebral palsy and of course, he reached down, picked him up and held him for a minute, whispering into his ear and kissing him.The entire world was watching in awe of the beauty of this moment. 

 I was delighted to discover I knew that little boy, I just met the previous December him with my daughter Christina who has Down syndrome.              

  Here's the rest of the story. http://www.patheos.com/Catholic/One-Minute-Lesson-Leticia-Velasquez-04-09-2013.html

Do you want to participate in Clinical Research Trials for Down Syndrome?

You can help advance the treatment of symptoms of Down syndrome. Click here and see what is being offered near you. I found a study at University of Rhode Island only 45 minutes away.

Why our girls missed opening day at the softball field

I was a new mother adjusting to life with my third daughter who has Down syndrome in 2002. One of my first ventures outside the house was to my daughter's softball game. I brought my baby Christina in her infant seat in the stroller. I had little experience with public reaction to my daughter, but I felt very uncomfortable with the reaction of the women at the game. I never brought Christina back to the softball games, in fact I avoided them altogether, though I couldn't say exactly how she was rejected, a mother knows. Then, the next year my daughters, ages 9 and 5, weren't invited to enroll for softball.They never participated in their favorite sport again.
Seven years later, I met the wife of the girls softball coach. I didn't have the courage to ask her why my girls were excluded from softball, but she volunteered this story.

"My sister-in-law had made up her mind to abort her daughter with Down syndrome, and I tried to talk her out of it. A  few months after the abortion, she accompanied me to the softball game where you brought your daughter with Down syndrome. She felt so uncomfortable at seeing your daughter, I could never invite your girls to play on the team again."
I feel for that woman's pain, its obvious that she regretted her abortion, and made my family suffer because of it. How much better would she have felt if she gave birth to her little girl and gave her to one of many families seeking to adopt a child with Down syndrome?

if you don't want to raise your baby with Down syndrome, don't abort;
call the National Down Syndrome Adoption Network http://www.ndsan.org/

Happy World Down Syndrome Day!

We celebrate World Down Syndrome Day on March 21 because those with Down syndrome have three copies of the 21st chromosome, thus 3-21.
Here's a message from our friends at Lejeune USA:

The Jérôme Lejeune Foundation, USA is proud to join with disability advocacy associations from 11 nations (Spain, Portugal, Croatia, the United-Kingdom, Italy, Germany, Poland, Latvia France, Russia, and New Zealand) in an international campaign to say together:

Down Syndrome… So What! (http://www.downsyndrome-sowhat.eu/)

This week, on March 21st the 2nd official United Nations World Down Syndrome Day will be celebrated across the world. This event aims to raise public awareness about Down syndrome and promote the rights, inclusion and well being of people with Down syndrome in our communities.

With advanced methods of prenatal screening available now in the U.S., and soon coming to other countries, World Down Syndrome Day takes on a singular and urgent dimension. The expanded use of early (10 week) non-invasive prenatal tests for Down syndrome threatens to increase the already staggering number of terminations of pregnancies which are prenatally diagnosed. The expanded availability of these new maternal blood tests will almost certainly cause increased terminations, further stigmatization, and rejection of these valuable members of our communities.

Most countries still lack comprehensive health policies to ensure that families who receive an unexpected prenatal diagnosis of Down syndrome are provided with accurate information about positive therapeutic developments and outcomes for those living with Down syndrome. Additionally, efforts undertaken to facilitate integration of persons living with Down syndrome into educational systems and work places remains insufficient.

Parents, first and foremost, need to be provided with a positive and welcoming message when receiving a prenatal diagnosis of Down syndrome. As a society, we should support these families and encourage them to love, welcome, accept and raise a child with a disability with adequate support. Individuals living with Down syndrome and their families are entitled to the same dignity and respect afforded to any other members of society.

In this newly launched awareness campaign, five people of varying ages with Down syndrome representing diverse cultural and national backgrounds call for the attention of the public and their political representatives. Their goal is to lessen the fear of those in society who are uncomfortable with the disabled, especially those living with Down syndrome. Thanks to their beautiful, mischievous and joyful faces, they witness to all of us that happiness is indeed possible for themselves and their families.

On the 21st March, the Jérôme Lejeune Foundation, USA joins with advocacy organizations world-wide to proclaim the same urgent message: Down Syndrome… SO WHAT!

____________________________________________________________

The Jérôme Lejeune Foundation (http://lejeuneusa.org/) (Paris/U.S) was founded in 1996 and is the world’s largest private funder of Down Syndrome research, providing some $25 million worldwide. In 2010 alone the Foundation invested $4 million in research, and funded over 60 research projects which together are breaking new ground in both the understanding and management of Down Syndrome, Fragile X Syndrome, and other intellectual disabilities of genetic origin. The Foundation’s mission is based upon three closely joined pillars of activity: research, care, and advocacy, all carried out in a spirit of profound respect for the dignity of all human persons.

============================================================
Jérôme Lejeune Foundation USA
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The mission of the Jérôme Lejeune Foundation USA is to provide research, care, and advocacy to benefit those with geneticintellectual disability. This is carried out by conducting, promoting, and funding in the United States therapeutically oriented medical research in the field of genetic intellectual disability, primarily Trisomy 21; by assisting in the development of healthcare services for these individuals; and by serving as their advocate in a spirit of respect for the dignity of all human persons.
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Jérôme Lejeune Foundation USA
Jérôme Lejeune Foundation USA
The mission of the Jérôme Lejeune Foundation USA is to provide research, care, and advocacy to benefit those with genetic intellectual disability. This is carried out by conducting, promoting, and funding in the United States therapeutically oriented medical research in the field of genetic intellectual disability, primarily Trisomy 21; by assisting in the development of healthcare services for these individuals; and by serving as their advocate in a spirit of respect for the dignity of all human persons.
The mission of the Jérôme Lejeune Foundation USA is to provide research, care, and advocacy to benefit those with genetic intellectual disability. This is carried out by conducting, promoting, and funding in the United States therapeutically oriented medical research in the field of genetic intellectual disability, primarily Trisomy 21; by assisting in the development of healthcare services for these individuals; and by serving as their advocate in a spirit of respect for the dignity of all human persons.

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Pope descends Popemobile to bless disabled man before Inaugural Mass

Gabriela's Spring Break was not in Mexico

Franciscan University of Steubenville offers mission trips to its students who want to sacrifice their time and effort on spring break to help the less fortunate. Some are romantic, like the mission trip to Ecuador that everyone wanted and some less romantic, like working with the working poor in the depressed steel town of Steubenville itself. But my 19 year old Gabbi did the most sacrificial mission trip of all, she stayed home with me and did paperwork, housework and anything I needed. 

Before she came home she asked me, "Mom, what do you need me to do?" It wasn't in an "I want to get it all over with so I can see my friends" request, because she said, "I want to make a list to make sure I get it all done". I was very edified to hear that, it was a balm to my tired soul. 

 I try to do my best without complaining, but taking care of Christina with Down syndrome who is unhappy at school because she is not learning to speak or read  has become overwhelming. I need a change, and to get the school district to send her to a different school involves a staggering amount of work, paperwork, evaluations, documentation, legal work, etc, etc. It is not fun to say the least. Or glamorous. And the pay stinks. But Gabbi cheerfully helped me and we got a lot done. I no longer feel overwhelmed. 

 It was boring, exacting work, but she was cheerful and efficient. Thanks to Gabriela Velasquez 11 year old Christina will have the opportunity to learn to speak and to read. And she celebrated her 11th birthday in style, with lots of fun gifts and her two sisters and aunts and uncles present.

As Mother Teresa said, sometimes your greatest mission work will be with your own family.

Study finds flashcards can help to teach spoken vocabulary

Study finds flashcards can help to teach spoken vocabulary

Dakota's Pride A New Parents Search for Positive News and Hope on Down S...

Great news in Cognitive Down Syndrome Rearch.

There has been a tremendous breakthrough in Down syndrome cognitive research. Using mice with a version of Down syndrome, they have successfully treated some of the hyper-stimulation of the brain which impairs their ability to think and communicate. NO side effects!

 Roche scientists and their collaborators corrected cognitive and behavioral deficits in Ts65Dn mice. They also showed that treatment with RO4938581 improved abnormalities of nerve cell number and function in adult Ts65Dn mouse brains. Together, these data demonstrate that selectively modulating GABA-A receptors in key regions of the brain results in major cognitive and behavioral improvements. These positive findings occur without unwanted side effects that have limited the use of non-selective GABA-A receptor blockers

Why should you be excited if you love someone with Down syndrome?

“Our drug research in Down syndrome may offer a novel therapeutic avenue to treat the cognitive deficits in people with Down syndrome, enhance their communications skills and ultimately help them have greater independence in their daily lives,” said Luca Santarelli, Head of Neuroscience at Roche.

I love my ten year old Christina as she is, but only my family can understand her attempts to communicate, and she wants to reach out and make friends, and will eventually want to find her place in this world. Helping her brain function best will enable her to communicate and achieve her dreams.  
Read the entire article here. 

My memories of Pope Benedict

Go on over to Causa Nostrae Laetitiae to read some of my reflections on how Pope Benedict touched our family.

Why this special mother cheered tonight

Christina and I were sitting on my bed, listening to Marco Rubio's rebuttal of the State of the Union speech. I was calm, not expecting any surprises, when he said,

"I want to offer school choice to all parents especially parents of special needs children."

I cheered  boisterously, startling Christina and causing Bella to run into the room demanding to know what he said. Marco Rubio rocked my world. For his remarks touched upon the greatest struggle of my life, the fight which has kept me up nights, and dogs me by day, I am fighting to get Christina who has Down syndrome, into a private school, paid for by her school district.
 I have hired an attorney and will have to take it to a mediator in Hartford. I am told I have at best a 50% chance of winning, but win I must. My daughter is not communicating well, and I will not stop till I find the experts and school who can help her learn to speak. When she was five she spoke better than she does now. Something robbed her of her speech, and as her mother, I must identify and conquer it. Or what good is school doing if she can't even get her personal needs met and communicate her feelings?

 In Connecticut there is school inclusion. For five years on Long Island, my group of friends who had children with Down syndrome sang the praises of inclusion.  When we were told by our ritzy school district that she was not intelligent enough to attend our neighborhood public school, and we saw the inferior facilities  in the special needs school, we picked up and left Long Island where I had lived my entire life, and moved to Eastern Connecticut. There we peacefully enrolled Christina in Kindergarten in our local elementary school. The wonderful special ed director even suggested she attend a double session of Kindergarten, and I was delighted. I detail this blissful beginning of her school career in my book,  "A Special Mother is Born".

Things went well until second grade, when her pediatrician, a personal friend with a daughter with Down syndrome a year older,  spent a weekend with us and remarked that Christina appeared to have a lot to say but was unable to say it. She recommended various professionals who were specialists in speech and Down syndrome to help Christina. The first thing I did was call a PPT meeting at her school to address this crisis.

Unfortunately for Christina the special needs director had changed. The new director was an intimidating woman whose answer to my request for outside evaluations and speech therapy was "no" and "no". I was shocked. My husband and I paid for UCONN Speech and Hearing Clinic to evaluate Christina and give her therapy for a semester. Then I offered her progress chart as proof that the school should re-evaluate Christina's speech. The director said we'd have to wait for her scheduled evaluation next year and that the new autism program coming in next year would be perfect for her. She doesn't have a diagnosis of autism. Why can't special educators stop lumping together our children? Because we allow them to.
I did not fight for her rights, me who fights for our children in the public square. I don't know why, but I kept calling PPT meetings and asking for various concessions. We had limited Christina's outdoor activities on the swings and playscape because of an anomaly in her cervical spine which threatened her with paralysis if she was injured. Whether is was that or the fact that she was not making measurable progress in speech, her sensory issues or a combination of them and something we can't decipher, Christina began to give me trouble bringing her to school each day. It has gotten progressively worse so that I can't even get her to school without physically carrying her in her pajamas. My back spasms do not permit me to lift a 75 pound daughter into the car. I shouldn't have to. I took her to Crossroads Physical Therapy where they diagnosed her with a sensory integration problem and recommended a developmental optometrist who prescribed prism glasses to correct a vision problem that went unnoticed before. I write about this amazing breakthrough here. But the district remained intransigent. They would not listen to any of my suggestions for outside consultants.
The district changed special ed directors but the attitude remains the same. All my requests for evaluations, consultants, outside therapies or enrichment programs are turned down without even a discussion. The administrator is not interested in my pamphlets about education for professionals working with children with Down syndrome. She is convinced Christina has no greater potential for communication than the few words she says and pointing to the Ipad. She even refuses to let me take her Ipad home to continue developing her communication. Other districts allow it, but not mine. They disregarded the analysis of her physical and occupational therapists that she had sensory integration disorder and needed sensory stimulation throughout the day. They have a behavioral approach called ABA which is aimed at children on the autistic spectrum. It is not successful with Christina's sensory needs blocking her ability to process learning. She is miserable.

Time is passing and she is regressing backwards in her behavior and attitude, spitting and throwing things, becoming increasingly non-compliant in all areas of her life, home, school, church. She is becoming a different child than the happy girl who loved reading to me in her three word sentence books.

I have had several meetings where I tried to explain this to the district officials where the atmosphere grew increasingly toxic till the administrator called me to say she had made a report to the Department of Children and Families because Christina is missing school. a lot.I was threatened at first but then remembered who I am, a very active concerned mother. I had nothing to fear,  I met with a lovely social worker there and told her of all the therapists, social workers, psychologists, whom I have consulted with to help me resolve Christina's issue of non-communication and her dislike of school and she was completely sympathetic.She has pledged her support.

I am visiting special needs schools and consulting a famous special needs attorney to help me win the right to send my daughter Christina to a good school for special needs children. I have a visit planned on St Valentine's Day, and I will post my impressions on the blog. But I hate fighting. I would rather have the right to simply select an appropriate school, apply then inform the school district of my decision.

I wouldn't wish this struggle on anyone. Not everyone has the means to do this or the stomach for the insults to my daughter and I which are being thrown our way from officials.
May Marco Rubio's wish for parents of special needs children to have school choice become reality.

Preparing for Lenten Sacrifices

My friend Daria Stockey has written a great piece on Father's For Good on the Knights of Columbus website called "Giving Up Stuff".  We should be thinking of what Lenten practices we are going to implement  before Ash Wednesday this week.

What have you given up in the past which has produced much spiritual fruit?
Daria shares an idea which may help women with a proclivity for shopping.

My other big fast each year is something only women will appreciate: a fast on shopping. Other than groceries, there are very few things that we are really compelled to purchase during any given six-week period. I really can make do with the clothing, kitchen items, beauty products, and office supplies that we already own for the duration of Lent. The thrill of the bargain hunt, cruising store aisles for clearance sales, checking out the latest fashions, snagging a pretty piece of costume jewelry, a pair of shoes, a new DVD: this is fantastic givinup material for most of us females. Just toss those sale flyers in the trash without a glance, and be strong! Meanwhile, my menfolk scratch their heads and wonder why this constitutes a sacrifice.

The best Lenten practice I ever implemented was to discuss my cases as a Social Worker at Catholic Charities, my first job out of college,  with my ailing Grandmother who was living at our home her last year of life. She had been the unpaid family social worker, taking care of the lonely, poor and elderly in her home.
She was never compensated in this life for her heroic sacrifices caring for my grandfather's uncle Adam with Alzheimer's disease and giving him a decent burial. Grandma grew up in poverty in Ireland, came to the US to bring over all her siblings and never stopped giving. She was full of joy and a wonderful storyteller, so I decided to share my stories from my job with her as a gift and a sacrifice for Lent.
I was tired after a long day of social work and didn't relish reliving often harrowing experiences, but the joy it gave Grandma during her last Lent on earth was a gift I was so thankful to give.
 I was sure that the Lord had inspired me to give of myself to her. Ask what He wants you to give to a family member this Lent. I think I will focus on spending floor time with Christina playing whatever game she wants to play for an hour a day. I have a feeling this activity will give us more than it requires in sacrifice.

We had a White Christmas, did you?

The Lumen Christi Award

Thank you, Jean, for this award, which is both an honor and a blessing!

Here are the rules if you accept this award. You need to do these things:
1) Name your favorite saint, and why.

2) Name your favorite part of the Mass, and why.

3) Name your favorite part about being a Catholic.

1. My favorite saint is Padre Pio of Pietrelcina. He is an example of patient suffering and a famous man who remained humble. I have a personal reason for devotion to him. My Grandpa James Crafa came from Pietrelcina, in fact he was baptized in the same church only ten years after Padre Pio. Padre Pio's great grandma was Maddelena Crafa, so we might be distant cousins.

2. My favorite part of the Mass is the Consecration because this is when the bread and wine is changed into Christ's body and blood through the miracle of transubstantiation. This is the holiest moment of the entire Mass. (I took this from Jean because I agree with her and she just got a Master's in Theology and used the correct terminology)

3. My favorite part about being a Catholic is being friends with Jesus and being able to receive Him Body, Blood, Soul and Divinity into my own body.

In turn I nominate the following bloggers:Allison Girone
Lisa Graas
Dorothy Pilarski

Christmas Joy 2012