Tuesday, May 12, 2015

Have Scientists Unlocked the Mystery of Cognitive Decline in Down syndrdome?

 This is the most exciting research development for my daughter with Down syndrome and significant cognitive decline a long time! Read here. -

Down syndrome, the most common chromosomal disorder in America, can be complicated by significant deterioration in movement, speech and functioning in some adolescents and young adults. Physicians previously attributed this regression to depression or early-onset Alzheimer's, and it has not responded to treatments. Now, a researcher at the University of Missouri has found that Catatonia, a treatable disorder, may cause regression in patients with Down syndrome. Individuals with regressive Down syndrome who were treated for Catatonia showed improvement, the researcher found.
"Our findings are important for young people with Down syndrome, autism and probably other neurodevelopmental disorders," said Judith Miles, professor emerita in the MU School of Medicine and researcher with the MU Thompson Center for Autism and Neurodevelopmental Disorders. "Until recently, Catatonia was felt to be just a complication of schizophrenia; however, it now is known that Catatonia is a common neuropsychiatric disorder that complicates many types of brain disorders. Our recognition that Catatonia occurs in young adults and adolescents with Down syndrome means these individuals who before were relegated to lives of incapacity may now receive treatments that restore them to their usual levels of activity."
Those who care for individuals with regressive Down syndrome describe them as "zombie-like," Miles said. Symptoms of regression can include difficulty moving and sleeping, inability to perform activities of daily living, no longer talking, and a lack of interest in previously enjoyed activities.
In her study, Miles followed the cases of four patients with Down syndrome who were diagnosed with Catatonia. Each patient improved when treated with a combination of benzodiazepine, a drug commonly used to treat anxiety, and electroconvulsive therapy.
"The wonderful thing is that Catatonia is a treatable cause of regression," said Miles, a pediatrician who led the Down syndrome clinic at MU for many years. "When we treat these patients who otherwise would be condemned to stupor-like existences, they can return to their baseline level of functioning. So, not only do we have a diagnosis, but we also have a treatment that is backed by years of successful use by psychiatrists. We're also beginning to know how it works to correct imbalances in neurotransmitters in patients."
Miles said she wants families, physicians, teachers and therapists to know that Catatonia causes regression in Down syndrome so individuals with the disorder can receive accurate diagnosis and treatment. But, more research is needed to better understand Catatonia, identify its prevalence among patients with Down syndrome and improve treatment, Miles said.
"I consider it a public health issue to determine how often Catatonia occurs in patients with Down syndrome," Miles said. "We don't know what predisposes kids with Down syndrome to develop Catatonia. However, one of the things we do know is that individuals with Down syndrome tend to acquire autoimmune disorders, so we're looking into autoimmune function and its possible connection to Catatonia."


They may have finally unlocked the reason why Christina had a sharp cognitive decline in her pre-adolescent years.  I spoke with Dr. Miles today and she will be presenting on a medical panel at the National Down Syndrome Congress in Phoenix next month. She is touch with Dr. Brian Skotko and hopefully, her protocol of anti-anxiety medication which seems to help those in catatonia 'wake up' to their surroundings and in some cases, return to baseline levels of functioning will be made available to those patients like my daughter for whom the medical community has had no clear answers.

Monday, April 20, 2015

Dear Sears, Thank you for Helping My Daughter with Down Syndrome

Chrissy shopping in our local drugstore.
My 13 year old daughter Chrissy with Down syndrome has a support person to help her reshape her behaviors so that she can get along better in everyday situations. Christina has autism as well as Down syndrome, making her more impulsive and stubborn, and has a very limited vocabulary which is a recipe for disaster in public. Most times I leave her home when I shop. On Friday we took a risk, and took Chrissy to Sears. Ana, her helper, and I were looking for bathing suits at Lands End so we look good when we take her to the pool, her favorite activity.
Christina was not ready for Sears. At first she ran in the door of the store and sat in the waiting area for Miracle Ear. She refused to budge despite harried looks from the lady in the office. I told Ana to go and shop while I kept Christina company there. As soon as Ana left, Chrissy bolted after her, and I tried to shop with her in the costume jewelry section. She is 13 and was fascinated by the bling of the sale watches. I was not quick enough to keep her from picking up a Hello Kitty watch in a plastic case. To my horror, she pitched over the railing of the escalator, where it glanced by the head of a manager and smashed to pieces on the escalator, creating a scene. Several judgmental onlookers were making my face turn red, as I yelled down the manager, "I'm sorry! My daughter doesn't understand what she did was dangerous!" He cleaned up the mess without making a huge deal about it. I continued on my way, trying to ignore the diapproving stare of a perfectly coiffed blonde mother of a perfectly dressed blonde  daughter of five. The mom and the little girl scowled at me, lifted their noses in the air and turned on their heels as if pleased to have let me know what they think of such behavior. My face burned red and I started to sweat. Ouch!
I could not find Ana in Lands End and so Christina bolted out of Sears to the mall where I gently helped her to the carpet. She cried and cried wanting to run top speed through the mall. and I kept helping her to the ground explaining that we were waiting for Ana. Onlookers saw her sobbing in frustration and I was worried they would call the authorities. Finally Ana appeared in Lands End and we joined her on the comfy couches provided for customers.
Two friendly salespersons provided Chrissy with coloring books to keep her busy while I tried on a bathing suit. When I emerged to buy the suit, Ana and Chrissy were gone. No one knew where they went and I had no cell phone (a certain young lady likes to hide it!) to contact Ana. Her cell phone had no power anyway, so I ran around and around the store and the mall searching for them to no avail. Finally one of the nice salesladies who gave Chrissy the crayons saw my distress and offered to page Ana.
There was no answer. More panic. Suddenly the saleslady got a cell phone call. The other saleslady was going home for the day and spotted Chrissy and Ana in the parking lot. I thanked her profusely and gratefully left. My hands were shaking and my vision was blurry from the high blood pressure induced by my panic. We went to eat pizza and discuss why Mommy was worried about Chrissy and how to behave next time. Trust me, the next time is a LONG time away!
The next day I came without Christina and sought a manager, I told her this story, offering to pay for the $15.00 watch. She said it wasn't necessary, and was pleased to hear of her sales clerk's efforts to help me with my daughter. She agreed that the salesclerk deserved props for her out of the ordinary consideration for a needy customer.  I am very grateful to Sears for hiring three employees who care about the dignity and the safety of customers with special needs. Its easy to judge Christina as the blonde lady did, as just a spoiled brat who needs discipline, and I can't claim perfect parenting, however that is not taking her complex challenges into consideration. Instead of judgement, a  little compassion goes a long way to make my and Christina's life easier.

Someday Christina and I will walk through the mall like I do with her older sisters, calmly shopping and enjoying one another's company. But it will take time and patience, and its a far off goal at this point. In the meanwhile, its good to know some of Sear's employees have my back.

Tuesday, April 14, 2015

My experience at a Hillary Clinton Rally

Since I don't see much difference between the 'new' Hillary Clinton listening tour today and the one I witnessed during her Senate run in 2000 I thought I'd share my reflections at Patheos. Even the Scooby Doo van is the same.

Monday, April 6, 2015

My Response to Changing the Conversation

Christina, age 13, helping make her own lunch
The discussion of pre natal testing and abortion as usual is a very emotional one. I decided to wade in. Here the original post. The blogger at For Elisium has it right, she says, 
"The new generation of kids with Down syndrome is the new normal, the new majority. Unfortunately, the people at the front lines don’t seem to know it yet. In fact, people with Down syndrome have scarcely been given a chance in recent history. First they were institutionalized, just as they are still in many countries. But in the U.S., when parents began questioning that practice in the 60s and 70s and insisted on bringing their babies home and insisted that they should be able to go to school, the laws started to change. This could have made an incredible difference for new babies born with Down syndrome, but the new realization came at the same time as two strikes against Down syndrome: Roe vs. Wade and prenatal testing.
Laws aren’t going to change–got it. Acknowledged. Not going to change anyone’s mind on abortion. Check."
The part which got me fired up is the comments from moms who aborted their babies with Down syndrome and are suffering at Baby Center. This is a sick culture which asks moms to fall on the swords of their consciences to save their babies from a life full of suffering. This type of deception, and self-delusional violence makes me angry.  Women are wounded, babies are dead, and the world is deprived the delight of these beautiful human beings. What may I ask , are we accomplishing besides some sick type of eugenics? Here is my comment on the blog.

 
The doctors are either ignorant of the prospects of living a fulfilling life with Down syndrome OR they know the truth, and are deliberately telling terrifying stories to scare moms into abortion. They may think they are sparing the mothers, the babies and society but as a society, we are past that type of “doctor knows best” paternalism.
The moms are kidding themselves if they think that by abortion they have saved the baby pain (do some research about how much pain unborn babies feel, particularly later in pregnancy) or that it is less selfish. We can not spare our children pain in this life, we can only accompany them through it. That is our job as mothers, not to make a decision your very heart screams to you is wrong.
My 13 year old Christina does not have a poor quality of life because she is very limited intellectually and has little language. Her life is very similar to my typical daughters. She is happy and sad, excited and frustrated like all teenagers. She is embarrassed by her mom, is a Daddy’s girl, has her favorite TV shows, loves attention when she gets dressed up and has her favorite pop songs.
Who am I to decide her life is not worth living? If I even had the unmitigated gall to suggest she would be better of dead, she would look at me as if I were crazy. Christina loves her family, her pets, chocolate, swimming and most of all she loves life. Her life.
I am a Catholic and look forward to seeing her fully functional in Heaven, singing God’s praises with full voice, and doing cartwheels in the Elysian fields. When her time comes. But I have NO right to decide when that time is. God gave her a life filled with purpose and she must live out her destiny. My older daughters my husband and I were chosen to guide, protect and learn from her in our mutual journey. That is what a family does. We grow as a unit, crying, laughing, working and loving one another with all our faults.
And, God willing, we will celebrate that eternal Alleluia in Heaven together. And I suspect my daughter has seen Heaven a bit more clearly than we have, as she does not judge her neighbors by their abilities. She looks at them as friends.

Thursday, March 26, 2015

Review of "Joyful Witness: How to be an Extraordinary Catholic"


by Randy Hain

Americans know a lot about movie stars, musicians and athletes. Often, we know more than we want to know about their lifestyles and relationships. How this type of bad example influences us and our children is well known, yet most of us feel helpless to counteract it. It takes concentrated effort to find good examples to follow, especially if you are attempting to be a good Catholic. Good Catholics rarely make headlines these days. Here is a book which attempts to make edifying examples of holy Catholic lives easier to find. 

Some Catholics think that today’s saints-in-the-making are humorless old fogeys dressed in  grey who never step outside of church. By compiling stories of ordinary Catholics leading extraordinary lives of irresistible joy, Randy Hain, the creator of the website, The Integrated Catholic Life, has done Catholics a great service. He dispels that stereotype by relating thirteen stories about irresistibly joyful Catholic people whom he has met in his daily life, with a vibrancy that leaves the reader feeling inspired, not overwhelmed. 

I read one chapter a day in my prayer time and used the helpful series of questions at the end of each chapter as a tool to challenge myself to conform my own actions and attitudes to that person’s example. Hain makes sure to emphasize the useful advice from each of his story subjects. Advice such as “Receive the Eucharist daily," "be humble," " we must support and pray for our priests," "we must properly catechize ourselves,” are highlighted in bold print and leave no doubt as to why he chose these people as examples to help us in our own walk of faith. Each chapter is headed by a Scripture verse or a paragraph from the Catechism of the Catholic Church which epitomizes that person's life. The people whose stories grace this book range in age from pillars-of-the-Church great-grandmas to exuberant youth leaders, from humble home-schooling moms of many, to prominent successful businessmen. No one is exempt from living a life of joyful witness to Christ according to Randy Hain, and he gives you the education and inspiration to make the journey in your own life. 

Living in the highly secular Northeast, I enjoyed the example of Andy LaVallee, a successful bread distributor in Boston. After a life confession and re dedication of his life to Our Lady while on pilgrimage with Jim Caviezel, Andy began to learn and apply Catholic social teaching to his employees with amazing results. He was inspired by reading of Pope Emeritus Benedict's encyclical, Charity in Truth. Andy says, "The Holy Father was asking us to seek hybrid programs that could develop and help people and business enterprises. This encyclical provided the motivation for my company to transform our biggest department, our distribution program, into something more devout." He changed the title of the job from "driver" to "guardian" and gave the employees who dealt directly with the customers a bigger responsibility, teaching them the concept of servant leadership, encouraging to grow their routes by giving them a share in the new business they created. It lead to increased profits both for the drivers who felt more invested in their work and the company. Another time, after prayer and reflection, Andy rehired an employee whom he fired for insubordination. Andy accompanied this unprecedented action with a memo on forgiveness so that, "my entire company would understand the power of this virtue." Andy's attendance at daily Mass, weekly confession and adoration is the power behind his unique brand of leadership. He shares his story with other business leaders and also with fellow Catholics. 

Joyful Witness would make an excellent book for a study group for Catholics who want to support one another as they grow in faith or for RCIA groups who want to give practical examples to new Catholics of what living a fully Catholic life really means. Blessed Mother Teresa gave away the secret of her success when she said, "Joy is a net with which to catch souls." I give Joyful Witness an enthusiastic thumbs up!

Monday, March 16, 2015

Praying before Battle

Rarely does a Scripture leap out at me as powerfully as today's impromptu reading of Matthew's account of the Agony in the Garden of Gethsemane. In Matt 26:45, it reads, "So leaving them again, He went way, and prayed for the third time, saying the same words. 45 Then he came to the disciples and said to them. 'Are you still sleeping and taking your rest?' Berhold, the hour is at hand and the Son of Man is betrayed unto the hands of sinnners. Rise, let us be going see my betrayer is at hand.'"46
Three calls to prayer at Gethsemane to prepare for the Passion were ignored by Peter and the disciples, followed by Peter denying Christ three times and all but John abandoning Him on the Cross. After Jesus is in the Tomb three days, and appears to Peter on the shores of the Sea of Galilee, cooking fish over a charcoal fire, He asks Peter three times, "Peter, do you love me more than these?" when Peter answers Yes each time, Jesus asks him to "feed my sheep."
I never knew about the three times Jesus returned to ask Peter and the other disciples to pray. It struck me today that Jesus has asked me to pray and prepare for battle many times and that I have failed to pray and thus failed to have the strength I required to defend Him in the public square. Now I remembered that tomorrow the hearing for Physician Assisted Suicide is being held in the Connecticut Legislature Building,  and though I can't get a babysitter, I have to try harder and give it to Jesus, to pray and prepare and leave the result to Him.
This time I am saying "Here I am Lord."


Friday, February 27, 2015

Her favorite things; my daughter with Down syndrome rates Lady Gaga




Christina is a young lady who knows what she wants. You'll discover that if you dare to suggest a movie or song that she doesn't want  at that particular moment. You may see a DVD go sailing past you  as she makes her rejection known.

But it doesn't really matter that Christina is so opinionated.

She has excellent, wholesome taste because I screen everything she sees. That is the beauty of homeschooling a daughter with Down syndrome. You can create the bubble of innocence around her that will preserve her purity and her sense of security that the world is a good place. And if you are careful, she won't get through the cracks to the  outside world, as her older sisters fought so hard to do. It makes me wonder how long I can keep her world a happy collection of old musicals, saint videos,  and princess movies.

Watching the Academy Awards downstairs with 17 year old Bella (yes we switched off the underwear show!) while Christina was watching "The Sound of Music" upstairs seemed a safe plan. When Christina's movie ended, she came downstairs, and I kept the remote in hand when she  began to watch the Awards with us.
I tensed up when Lady Gaga appeared on stage to sing a 50th anniversary tribute to our favorite musical film, "The Sound of Music." She looked innocent enough (barring the tattoos) in a sparkly white ball gown reminiscent of  Glenda, the Good Witch in "The Wizard of Oz." Her hair hung in silver curls, and her voice was sweet. I expected the dress to be ripped off, revealing a horrible red get up (she did sport a gaudy pair of dish washing gloves on the red carpet)  in mockery of the film's Catholic theme.

My cynicism was gradually replaced by wonder at her talent (why on earth was she hiding such a gift?) and the enthusiastic response from the audience. Bella and I cheered through the last songs of the medley, like we do when the Yankees are nailing the Series, all the way to the grand slam when Julie Andrews came out and gave her a bear hug. Tears streaming down our faces, we gave her our own standing ovation!

"Well done," I said, "now go and sin no more!"

Christina was calmly enjoying the very same music she had just enjoyed upstairs.  To her, this near miracle of Lady Gaga using her impressive talents in a wholesome manner, was merely life as usual. She has no understanding of how debased the culture has become in those fifty years since I was a little girl seeing my first movie in a theater. Culturally speaking, Christina lives back  in 1965, when entertainment did not need as watchful a mother to shield her girls. Songs make her joyful, lifting her heart to God.
 May her favorite things ever protect my precious
child from this sick world we have created in the past 50 years.


Wednesday, January 28, 2015

What have we learned in 70 Years since the Auchwitz Liberation?

Over 70 years ago, the German government with the cooperation of doctors target a segment of the population for death based upon their genetic makeup and carry out a plan of extermination with the parents as participants, at times forcing the public to fund this  program.

 Hitler started the T4 Program which employed doctors of the Third Reich to target the handicapped and mentally ill for destruction. They were labelled 'useless eaters' who ate food which should be going to the soldiers.
 The doctors slated these people for death by putting a check next to their name on the roster. No violent raids and noisy arrests of the Concentration Camps, merely a simple check-mark by a physician, and that unfortunate person was shipped in the  busloads of so called "useless eaters" to killing centers for the first gas chambers.

 Eventually the German people began to wonder about the ashes which flowed from the crematoriums. The Church protested and then Hitler took the program underground and the disabled were starved, left to die of exposure or given a lethal injection, after which their families were informed by letter of their demise of some illness.

Not enough protest led to the Holocaust of millions we commemorate today.

We were not taught about the T4 Program in school. In fact only recently has a memorial been erected to the 200,000 victims of the Program. (See photo) Why the silence?  We say "never again" to this genocide 70 years afterwards but do we truly mean it?

Statistics on abortion for babies prenatally diagnosed with genetic anomalies like Down syndrome range between 75-92%. If its not government targeting a population, then someone surely is.

They are killed silently by doctors in medical institutions,  just as the children and adults in the T4 Program were killed by doctors in institutions. Many of the victims of the T4 Program were handed over to the state by their families ( a notable exception was the 14 cousin of Pope Benedict who had Down syndrome and was forcibly removed from his family in 1944 and died within the year).

Abortions of the disabled today are done with the mothers' consent.

The media and society at large are largely silent about this, ignoring well more than  half a million people who protest abortion every year in DC and around the nation. In the meantime,  we have found better and more efficient means to select babies with disabilities for abortion earlier in the pregnancy. A quarter of mothers whose baby was prenatally diagnosed with Down syndrome say that their doctor insisted that they abort their baby.

It gets even worse.

Medical doctors and self proclaimed bio-ethicists are even arguing for "Post-birth abortion" in case a 'useless eater' slips through the net. Former Surgeon General Joycelyn Elders suggests that pre-natal testing and abortion of babies with Down syndrome saves the government money.
Where have we heard that before?

Not even 20 years after the Holocaust, the US  government, with the cooperation of doctors target a segment of the population for death based upon their genetic makeup and carry out a plan of extermination with the parents as participants, at times forcing the public to fund this  program.

We have learned nothing.  Shame on us!

Tuesday, December 16, 2014

Let Your Light Shine Before Men

We went to Massachusetts Eye and Ear Infirmary in Boston yesterday for my semi annual checkup. After receiving wonderful news from the surgeon who treated my ocular melanoma, my daughter Gabbi took me to lunch at a Thai restaurant in Boston's elegant shopping district.

We were surrounded by the artsy crowd from Berklee School of Music which was across the street. It reminded me of my college days in Manhattan, when I frequented the cafes of Greenwich Village. Only in those days, I cared about impressing that self-important crowd. Gabbi, a wise college senior, knows better. she just laughs at their pretensions and was shocked to see how much food they waste. Her mission work in Ecuador has given her a new perspective on our wasteful lifestyle in the West.

After lunch, we spent a few minutes at the feet of the King of the Universe at perpetual adoration at St Clement's Shrine. A dozen people of all ages and walks of life sat enveloped in prayer in that starkly beautiful, traditional brick church with a marvelous carving of angels around the Monstrance on the Altar. Traffic roared all around us but the absolute peace of being in the Real Presence was overwhelming. We soaked in grace like solar lamps, only to give it off later as we joined the Christmas shoppers on posh Newbury Street. 

At first we thought we blended in, after all we dressed up to come to the city, but soon we discovered that we stood out of the crowd, and that Jesus might have something to do with it. Two people spontaneously remarked on how much we looked a like, one was an effusively charming man who was sweeping the street, and said to Gabbi, "Young lady, I can see where you get your beauty from,  your mother." Another mother and daughter practically  tapped Gabbi on the shoulder asking directions to the Prudential building. We were happy to be able to give them, pointing to the sky where the building towered over us. Gabbi remarked, "Mom, there were a dozen people at the corner, I think she chose us because we looked approachable, I think its because of Adoration!"

That was not all. We were looking at an expensive handbag we couldn't afford in Fossil, and the salesman gushed over our less than skinny figures. "Thank you ladies for having healthy figures, so many women come in here looking like sticks!!" How did that gentleman (on the skinny side himself), know he could give such an unusual compliment without being rebuffed?

It seems that when you immerse yourself in Jesus, even for a moment,  you become irresistible to those who seek Him even if they do not know Him by name. It was a honor being His unwitting emissaries yesterday. May we always be mindful that we might be the only Gospel those people will ever read.

Thursday, December 11, 2014

Review of The American Catholic Almanac

The American Catholic Almanac: Daily Reader of Patriots, Saints, Rogues, and Ordinary People Who Changed the United States
Image Books, NY
Emily Stimpson and Brian Burch

Back when political correctness was in its infancy, I was a Catholic student in public high school. My instructors seldom missed a chance to malign the Catholic Church for her so-called injustice, ignorance, and intolerance. Thanks to them, I learned a lot more outside that class than in it: I had a Jesuit priest in my local parish help me find information to refute those spurious claims. It took a lot of work and many books to find the information I needed. My teachers had an all-too-familiar agenda; to make Catholics ashamed to live their faith publicly.
 Since the seventies, this toxic agenda has spread throughout education, the media, the marketplace, and the government. Planned Parenthood has a new campaign which openly tries to slander politicians who support the culture of life, many of whom are faithful Catholics, as “unfit” for public office. We have seen Supreme Court Justices and politicians abandon their Catholic values and most Catholic institutions of higher educations’ course offerings and graduation speakers’ resumes would be scandalous to their founders. Where can the busy non-scholar who must be educated in these hostile environments find a reliable, readable source of information?
The American Catholic Almanac is a daily digest of stories about 365 Catholics who made an impression in American history from colonial times when being a Catholic was dangerous, to our majority Catholic Supreme Court. Not all of the people whose stories are told in the Almanac are as saintly as Venerable Pierre Toussaint. Some are well-known personages like President Andrew Jackson who credited his victory in the Battle of New Orleans to the prayers of Ursuline Nuns, or Mother Jones, the diminutive Irish Catholic widow who was an advocate for worker’s rights. Some are infamous Catholic Americans, such as former New York Governor Mario Cuomo who invented the excuse that, ‘I am personally opposed to abortion, but, as a Catholic politician, I cannot impose my personal beliefs on others.’
 Many of the personalities brought to life in the stirring tales are little-known Americans who served their countrymen with honor.  I was astounded at times at just how much America owes to loyal, patriotic, little-known Catholics.  I kept saying to myself, “Where was this book when I was in high school?” Even the sisters who taught me in Catholic school never mentioned the stunning breadth of the Catholic influence in creating this nation and making it the magnet for immigrants that it continues to be. You certainly won’t find it in a textbook written by secular publishers, and there are few Catholics who are well versed in this information. It is a precious legacy which merits a wide audience because it will be a game-changer when enough Catholics know just how much American owes Catholics for becoming the great nation she is. We will fearlessly take the lead in politics again, ready to answer our many critics, that yes, Catholicism belongs in the public square, for that is where it does our nation the most good.
Who should read this book? Homeschoolers, Catholic school teachers, public school teachers, students who face that daunting question; who should I write my report about? Grandparents who want to improve their minds, and their grandchildren who are often on the front lines of the culture wars. Politicians and pastors looking for gripping and often humorous stories for their public speaking. Did I leave anyone out?

This book is meant to be read only one story a day, but you will find yourself reading more. Add this pithy, well-written book of riveting stories to your daily prayer time, and you will find yourself inspired to go out and become the protagonist of the next great story of a Catholic who changed American history. 

Monday, December 8, 2014

Letter from a Special Mother to the New Jersey Legislature on the Physician Assisted Suicide Bill


Thirteen years ago as the Twin Towers crumbled to the ground, I wept, but I did not despair. 
I had hope, for the future in those difficult times for I was carrying my third daughter.

 Christina was born in March of 2002 and we were thrilled. The fact that she was born with an extra 21st chromosome was not nearly as discouraging as losing thousands of Americans on 9/11. Life was a sign of hope, no matter how the person differs from our definition of 'normal.'

The second saddest day in my life was the day I discovered that not everyone welcomed my daughter into life. Two nurses in the hospital expressed regret that she was born and one offered me phone numbers to have her face "fixed" by a plastic surgeon. I was heartbroken by such cruelty from those whose lives are dedicated to alleviating suffering and saving lives. They made a value judgement that Christina's life was not worth living, and they assumed that I would agree. They never considered her a person with human rights. My daughter is full of life and optimism, she never met a person she didn't like, and everyone in the town we live in knows her name. She is the heart of our home and a gift to our community. 

My greatest fear is that one day, when I am no longer around to keep a close eye on the medical staff who treat my daughter, is that one of them will decide that preserving her life is too costly, that she has nothing to contribute to society, she is suffering too much, and would be better off dead. 

I have interviewed many mothers of children and adults with special needs and learned that this is far more often the case than the media will admit. Our children are often considered a burden to society and many healthcare professionals feel obligated to allow or help them to die.  That is why my friend and I founded KIDS(Keep Infants with Down Syndrome) to raise awareness of the beauty of life with extra chromosomes. 

We who love individuals with disabilities know how valuable they are to our families, you can read 34 such stories in my book(link in my signature). We know that allowing voluntary Physician Assisted Suicide will be one step closer to a society, like Belgium which has recently begun to euthanize children, the Netherlands where the elderly are afraid to go to a hospital,  or Denmark which bragged by 2030, there will be no more people with Down syndrome. 

America is the the nation who opens her arms to those in need from around the world, we must not become a place where you have to be perfect to survive. 

Leticia Velasquez
Co-founder of KIDS (Keep Infants with Down Syndrome)
author of "A Special Mother is Born".

Monday, December 1, 2014

The Other Ferguson

Reading of all the violent protests in Ferguson, MO, I was wondering why the word 'Ferguson' associated with racial violence was stirring memories in my heart. . . and suddenly I was brought back 21 years. To the Long Island Railroad Massacre

It was December 7,1993, my first as a mother. I was decorating our apartment to celebrate Las Posadas, a traditional Latino ceremony commemorating when Mary and St Joseph sought shelter in Bethlehem. The TV interrupted my joyful preparations with tragic news; 6 commuters on the Long Island Railroad stop near my home were dead, and 19 injured by a lone gunman, a Jamaican man named Colin Ferguson.
I will never forget how I felt when I learned that he had been expelled from Adelphi University which I had attended with him only three years before and that his intention was to start shooting on that campus, walking distance from the station where the shooting occurred. A relative of mine, who was Dean of Students at that time, had expelled him for threatening a professor. It was very likely that his name was on a list in Ferguson's pocket of intended victims. He lived on campus and could have been killed. 
This was not a case of a poor young man.  Ferguson was from a wealthy family, he had a car and driver pick him up from school. 
As soon as the news hit, Jesse Jackson announced his intentions to come to our community to quell any backlash against the black community. All of Ferguson's 25 victims had been white. It was said he had racial slurs written on a paper in his pocket, though he was never charged with a hate crime. When Rev. Jackson arrived, there was no violence, just a community in mourning, who invited him to conduct a memorial service in the cathedral. 

Besides a trial which sent Ferguson to prison for 315 years, the only lasting outcome from this tragedy was that a nurse named Carolyn McCarthy, who lost her husband and had her son injured by Ferguson, ran for Congress on a gun control platform and still represents that district. 

Why did our community act so differently in the case of Colin Ferguson than so many people in Ferguson Missouri? 

I think its because we had intact families who helped us soothe our broken hearts and solid faith communities to inspire us to forgive. We were not incited to anger by our clergy and community leaders: we were encouraged to forgive and heal. And so there are no secondary scars which arose from one man's hatred, no one else was hurt as is happening in Ferguson, MO. 
Colin Ferguson was put away to kill no more and we healed and went on with our lives, never forgetting those we lost bu honoring their memory with positive action. 
May the grace of God available to us in abundance this Advent help those who are angry about Ferguson MO to forgive, to heal and to rebuild their lives. 



Friday, November 21, 2014

The Church is giving thanks for the lives of those with special needs

Christina and Daddy waiting for Mom to attend Mass in Maine this summer.
Mass of Thanksgiving for the Lives of People with Special Needs on EWTN Sat Nov 22 at 8PM

The commercial brought me to tears. I have never heard of a Mass of Thanksgiving for the Lives of People with Special Needs. I have heard of people with special needs being highlighted in events with all three recent Holy Fathers, but never a Mass of Thanksgiving for their lives. The idea that Bishop Peter Baldacchino recognizes that they are "windows into Heaven" for which he wants to encourage the faithful of Miami to give thanks is unprecedented. I am very grateful for this and intend to thank him for it. May all bishops be encouraged to do the same. 

I will never criticize the Church for a lack of specific ministries for my daughter with Down syndrome. I just want my daughter to be included in our parish at Mass and social events. But, lately,  I get discouraged when its difficult to bring Christina to Mass on Sunday. She used to love going to Mass and receiving Communion but lately she will only go on Monday evenings when the church is nearly empty. She is isolated from our wonderful parish and so is her father who stays home with her and attends a later Mass in another parish. 
Thanks to the Lord for my thoughtful pastor, Fr Tito, who never misses a chance to shake her hand when she does make it to Mass. He understands that she is more comfortable coming to Mass on Mondays. and makes a point to welcome her. He even spoke about her contribution to the world in a short documentary Gabriela and I produced about her called "A Missionary of Love". 
Thank you Lord for these pastors who recognize that our "windows into Heaven" are gifts to us from God and give thanks. 





Thursday, November 13, 2014

Book Review: Yes, God! What Ordinary Families Can Learn about Parenting from Today’s Vocation Stories by Susie Lloyd

In a recent address, Pope Francis described the family as the, "primary place for education, the community of love and life in which every person learns to relate to others and to the world." He continued, "All vocations make their first steps in the family."
We Catholics know this, deep down, but we have a tendency to deny the latter part of that statement. Vocations are for other people’s kids, we tell ourselves, our families aren’t perfect enough. We over-idealize those families who have produced vocations to the priesthood and religious life. We place them on a pedestal; imagining a large family filling the pew each morning at Daily Mass, homeschooling in Latin, cheerfully doing farm chores all afternoon, then serenely kneeling in the living room each evening for the family Rosary. These ideal Domestic Churches have no loud arguments, no black sheep, and no doubts that their children would serve the Church. Since our own families are not like those, we reason that our children could not possibly have vocations to the religious life.
 Susie Lloyd, the best-selling Catholic humorist, and homeschooling mother of her own large family, assures us that these lofty images are accurate, some of the time. But there’s much more to depth to families who produce vocations than we think, and in exploring their various characteristics, we just might find our families have more in common with them than we think.
In “Yes, God!” LLoyd chronicles the childhood and vocation stories of nine men and women religious, describing the details of their family which she believes brought each of them to say “yes” to God’s call to religious life. Chapters are named for the predominant strength which those religious and priests learned from their families. There is “Yes to Strength”, “Yes to Duty”, “Yes to Generosity”. No matter what the inherent strengths of a family, a vocation always begins with a “yes” and a family which strived to serve God with their lives. Families bring their particular gifts to their vocation whether their home was rural or urban, athletic or artistic, rowdy, quiet, or just plain contentious!
These families are not perfect. At times, Mrs. Lloyd points out; even the challenges in the home were used by the Lord to help the future religious transform weakness into virtue. This is true in the family of Sister Marie Jose de la Rosa S.C.C. whose chapter is subtitled, “Yes to Spiritual Poverty”. Her father’s long term unemployment and depression posed a daunting challenge for her mother who worked to support and raise her children singlehandedly. For Mrs. Lloyd, it’s not about perfection, number of children, or proximity to a Church building, it’s about the attitude which engenders the person’s “yes” to God.
And the attitude is not always universal. Sometimes a vocation comes as a surprise. One of the funniest stories in the book involves Mrs. Lloyd’s inability to see the great potential in a college friend, Fr Jeremy Paulin, OMV, now a Vocation Director.
 So it seems no one is off the hook when it comes to raising Catholic children considering religious life, since no two vocation-producing families are alike. Mrs. Lloyd’s characteristic humor keeps the Catholic guilt light-hearted as she brings to light helpful habits which an aspiring mother to a religious can implement in her Domestic Church. It’s a lead by example book on Catholic parenting, and it will have you smiling at both the strengths and faux pas of your own family as you read the captivating stories.

Monday, October 20, 2014

Review of "Seven Saints for Seven Virtues"

Jean Heimann, the author of Seven Saints for Seven Virtues had a wonderful Catholic mother. She modeled charity in action; she baked goodies for neighbors, nursed her sick and cranky father in his final days and was a model of charity for her daughter. also grew up with the venerable old volume Lives of the Saints which in archaic diction and fascinating details, told fantastic stories of the heroic virtue of the saints. I wonder, if as a child, Jean thought, "saints are models of charity, so is my mother, therefore, she might be a saint". I know I didn't  think that way about holy people whom I came across in my childhood; for me, saints were far off, ethereal beings who never even considered sinning. I think many Catholics were under that misapprehension, thanks to over zealous authors of saints' biographies and lack of role models in today's darkening world.

That's why this book is so important to Catholic spirituality. By describing how central growth in virtue is to attaining holiness, and by practically defining the seven virtues as well as the seven deadly sins, Jean Heimann gently reminds Catholics that holiness is not for a few lofty individuals, its for everyone. Charles Péguy once said "the greatest tragedy in life is not to be a saint." No one ever grew in holiness by comparing himself to the world.  Seven Saints for Seven Virtues gives us vivid examples of who Catholics should emulate, paired with their best known virtue. It offers the reader a road map for growth in the virtues which leads to holiness.

Seven Saints for Seven Virtues offers brief biographies of the saints,  filled with vivid descriptions of the lives of contemporary saints St. John Paul, Bl. Mother Teresa,  perpetual favorites, St Joseph, St Catherine of Sienna,St Agnes,  and the dynamic duo of mother and son;  St Monica and St Augustine. Despite her Master's Degree in Theology, Mrs Heimann's explanations of why those saints exemplify a particular virtue are easy to understand for laypeople. Her faithful writing at "Catholic Fire", an award wining Catholic blog, has given her the ability to reach her audience, making the seven virtues seem attainable and attractive. By showing how virtue leads to union with Christ, and interior peace, she makes the reader long to practice virtue more in their own life.

But there's more. Just as her mother was a role model in her life, perhaps without her family's acknowledgement of her outstanding virtue, Mrs Heimann knows that many of us live among ordinary people whose lives exemplify a particular virtue. Six other people are held up as role models of virtue. One is Olympic skiier Rebecca Dussault, whose pure relationship with her childhood sweetheart Sharbel,  grew to a chaste and fruitful marriage. A 32 year old mother of four children, Dussault is a model of modesty to her teammates, refusing to wear immodest clothing, be unfaithful to her beloved Sharbel, or be exposed to pornography. She was mocked by her teammates, but it never affected her resolve to live chastely as a married woman, athlete, mother and home educator. Sometimes her career as a skiier took a back seat to her convictions, "I also needed t be clear with my U. S. Ski Team coaches, letting them know that my husband and I practice NFP and that if I were to conceive--not that my chances were any better than any other woman contracepting on my team--we would yield to life unquestionably.I had many opportunities to share to share our use of NFP with others in light of marital chastity, trusting it even when the commitment to the Team was of Olympic proportions."

 Mrs Heimann, a long time blogger friend of mine, saw the quality of diligence in my life (my family are still scratching their heads at this!) and included me in the chapter on the virtue of diligence with my great inspiration St. John Paul the Great. When I studied his encyclical "The Gospel of Life" I was given hope in the idea that even I, a home educating mother and part time writer, could become part of the New Springtime of Evangelization.  Seven Saints for Seven Virtues continues what St John Paul did in his pontificate, calling laypeople to evangelize where they are by leading heroic lives of virtue, attracting others to the light of Christ.

Monday, October 6, 2014

Why I stalked Fr. Benedict Groeschel for Three Years

When you are an enthusiastic Catholic and  live in the New York City area, running into Fr. Groeschel is no great accomplishment, the man had a punishing schedule for decades. I remember running into him at the pro-life prayer walk on the Feast of the Holy Innocents December 28 one year and asked him a question which made his face light up. I said,
"Father, can you tell me the story of the Jewish mother who got ashes on Ash Wednesday?" With a twinkle in his eye, he answered in his fluent Broolynese, "When her son asked her why she got ashes, she say, 'So listen, it can't hoit!'"
Fr Groeschel was a mixture of a teacher, psychologist, storyteller,  and of course first of all a Franciscan priest. The stories he told about little old black ladies at Adoration, the depth of his writing about suffering and his unswerving dedication to Christ made me seek out his endorsement of the book of stories from Catholic parents of children with special needs. So I began seeking opportunities to speak with him about my book. Stalking him.
The first time was at a high school on Long Island, where "The Human Experience" was screening. He kindly told me "I do blurbs." I am going to set up a website entitled "I do blurbs!"
I reminded Fr. Groechel who I was when my family were at a rest stop on I95 near New Haven, CT. He was tired but attentive as his companion Father Terry introduced us and I informed him of the book's progress.
When I was farther along in my writing I found him in Connecticut where he was the keynote speaker for a pro-life conference. No snappy responses and no twinkle in his eyes. He looked tired but still took the manuscript and put it in his bag. I felt awful.
But then a few months later, when he called my home to tell me how he loved the book and how he thought I should publish the 30 plus stories in two volumes, I felt wonderful. Father offered to write the foreword and said that with that, I would have no trouble finding a publisher. Sadly, his punishing schedule kept him from getting to my book. I can only imagine that he had a pile of such manuscripts waiting, so finally I called him at Trinity Retreat House.  Father Benedict sounded very weak on the phone, and a realized that it was not possible for him to do it. He was willing but clearly overwhelmed and there was a pleading quality in his voice.
I asked a good friend of his Mother Agnes Mary superior of the Sisters of Life whom I stalked at the Villa Maria Guadalupe on the Fourth of July Life Fest in 2009, certain that she was not as busy as Father Groeschel. I bet that would make her laugh!
Her foreword was perfect and made me realize that I was meant to be encouraged by Father Groeschel but that Mother was the perfect person to write the foreword.
I saw Fr. Benedict one final time. We had dinner together at a banquet for a pregnancy shelter and he was our keynote speaker. The PA system failed, and by the time we asked him to resume his talk, the wedding next door was blasting "La Bamba" and he could barely be heard. He bore it with patience, but I couldn't bear to bring up the topic of my book after all he'd endured at the banquet.
So we just enjoyed pleasant dinner conversation, and my book never entered into the discussion. Father is my favorite Catholic writer, speaker and priest. I was honored to have spent time with him and to have his verbal endorsement for A Special Mother is Born. He knew, as I do, that the spiritual beauty which emanates from these children would be a powerful means of conversion of hearts. May he enjoy the greeting from Jesus, "you fed me, clothed me, visited me when I was in prison, now enter into the home of my Father."
Father Benedict, the bad news is that I hope to follow you there someday. The good news is that I won't be bringing my book for you to sign!

Thursday, August 21, 2014

Richard Dawkins needs a hug from my daughter with Down syndrome!

Poor Richard Dawkins, he's a bright lad, but he just can't help stepping in it, can he?

Now he's gone and insulted those of us who love our sons and daughters with Down syndrome by suggesting we should have aborted our children. When a mother asks him what to do with her unborn baby with Down syndrome he answered.'Abort it and try again. It would be immoral to bring it into the world'
He's catching it now like a skinny kid in a schoolyard.

I was a bit like him growing up in public school. Bright. Bookish. Lonely.
In sixth grade, I suffered from social awkwardness (getting my head pushed into lockers by a naughty eleven year old boy with a crush on me) and the school psychologist tested me. Not him.
Apparently I had the problem.

Dr. Hess called my parents into a conference and announced joyfully, "I have wonderful news, your daughter is a genius." My parents were nonplussed. Mom had the perfect rejoinder, "That's great, but tell me something,  will that make her happy?" Good question Mom! It has made life both easier and harder. But it doesn't make me more valuable to society unless I use it for the good of others. Its how we use our gifts from God which makes us who we are.
Sadly in Dawkins' case, superior intelligence has made him the social misfit I once was. I outgrew it because God taught me something important; life is not about intelligence or superiority. Its not about being clever or right. Its about love.

The kind of love I experience on a daily basis from a little girl without the high IQ I have. My daughter Christina has Down syndrome and many intellectual challenges. You know what?  It has been those very challenges which have built tremendous character in her. She is persistent to a fault, slow to speak, meditative, and highly sensitive to the feelings of others; qualities which Richard Dawkins sorely needs.
Christina doesn't waste time or get others upset by pontificating on Twitter about who should live and die. She spreads joy wherever she goes and has made her mom into a better person. She inspired me to write a blog, publish a book, and go to Washington every year to defend her right to be born. She strips away my foolish pride, helps me unplug from the computer,  and induces me to spend time listening to crickets on a summer evening. She also makes a delicious homemade pizza!

Maybe I'll ring up Richard Dawkins and invite him over for a slice. 


Thursday, July 31, 2014

Why argue about the percentage of unborn babies with Down syndrome aborted?

Down syndrome advocate and mom Amy Truesdell Becker, recently wondered on her blog Thin Places on Christianity Today why the incorrect statistic that 90% of unborn babies prenatally diagnosed with Down syndrome are aborted us still used. There are new statistics which claim that 'only' 75% of those babies are aborted when diagnosed prenatally with Down syndrome. That means if you have an extra 21st chromosome you have only a 50% chance of making it out of your mother's womb alive.
The history about the 90% statistic is the following; it came from a Wall Street Journal article in which Dr Brian Skokto was quoted. It was read by then Senator Sam Brownback who then went on to introduce the Kennedy-Brownback Bill which required that expectant parents of babies with Down syndrome be offered up to date information on what life with Down syndrome was like. It passed both houses of Congress and was the last piece of legislation Senator Kennedy sponsored, a rare moment of bi-partisanship, which I commemorate here.
So, this bill and the resultant fame of the 90% statistic was the first effort to overcome widespread societal opinion that people with Down syndrome are better off dead. Sadly the legislation was passed as the Obama Administration took over, and HHS Secretary Kathleen Sibelius never funded it, with the required $5million needed to provide informational pamphlets to doctor's offices. So now the effort is going from state to state like the recently passed Chloe's Law in Pennsylvania.
The effort has resulted in a lot of infighting about what  should be included in informational pamphlets as chronicled in painstaking detail in Mark Leach's article. The main objection to the attractive, bilingual Spanish Lettercase booklet was voiced by individuals with Down syndrome who were insulted that abortion was listed under options for parents whose child had been diagnosed prentally with Down syndrome. This became even more of an issue in 2011 when a new blood test for Down syndrome MaterniT21 was released by Sequenom, raising the stakes as potential thousands of parents who would not be tested might now request the non-invasive highly accurate maternal blood test available at around ten weeks gestation.
So the ninety percent statistic is no longer relevant but it may be replaced with far more ominous one as more parents opt for this new testing. Amnio and CVS are invasive and fairly late term tests, occurring at 16 weeks with an few weeks till results are available.  Although MaterniT21 is only a screening test, and is not considered a diagnostic test, Dr Skokto has voiced concern that it will be used as a diagnostic test, and raise the current statistic of babies with Down syndrome who are never born.
All this could have been avoided if in 1959 when Dr Jerome Lejeune's team discovered that an extra 21st chromosome was the cause of Down syndrome, the information was used to improve the lives of those with the condition. He meant for his discovery to provide an avenue for research into prenatal treatments to diminish the effects of the extra chromosome on the developing baby.  Instead the karyotype of Down syndrome was combined with amnio to perform the first prenatal test and the method of search and destroy pre-natal testing was born. Eugenics took a leap into a brave new realm of science. Abortion was not widely legal in the US, however, abortion of babies with Down syndrome was more acceptable to the American public who saw the lives of those with Down syndrome at that time largely lived in neglect in state institutions as miserable. Mothers of a certain age were encouraged to abort merely based upon statistics that they might be carrying a baby with Down syndrome. So the prenatal test was touted as lifesaving, the very same claim made by Sequenom for MaterniT21. It will save babies lives.
In fact, Down syndrome was the abortion wedge issue of the 1960's. Those who would not approve of abortion of typical babies did approve of abortion for babies with Down syndrome. But Dr. Lejeune spent his life trying to undo the great harm caused by misuse of his discovery and died in 1994 regretting his failure to come up with a cure, which he insisted was necessary to save their lives. "In order to save them, we have to cure them. The task is immense, but so is hope."
Today, according to an article by Lejeune USA president Mark Bradford no fewer than five clinical trials for treatments to greatly improve the lives of those with Down syndrome are in progress, a testament to Lejeune's legacy and advocacy by parents like Rep Cathy McMorris Rodgers, (R-WA) mother of Cole a young man with Down syndrome and founder of the Congressional Down Syndrome Caucus. The Congresswoman has advocated tirelessly for more research funds for Down syndrome and with leadership growing in the Down syndrome community from groups like Keep Infants with Down Syndrome and Saving Downs the future does indeed look hopeful and terrible stats like 90%, 75% or 50% will be a distant memory. Because even one death due to one's unique chromosomal structure is one too many.





Thursday, July 17, 2014

Living with the Unthinkable; leaving your child to die in a hot car

As the mother of a twelve year old girl with Down syndrome, Christina's safety has always been my primary concern, and too often my obsession.
 . . . sometimes I have to put in a load of wash or get involved in yard work, look up and Christina is gone. The house is eerily silent, and she does not answer my panicked calls. It last happened on Sunday, in the dark, and she was found in the car in the driveway, waiting to go pick up Bella from youth group. Most times it is something normal which any other ten year old could do without freaking me out. But Christina is NOT a normal ten year old and stories like this terrify me.
 News that a child with Down syndrome like Christina has died in an auto accident as she wandered from her home in the middle of the night sets off my inner terror. So I put up extra high fences with locks around my property on a quiet country road, and changed all the door locks so that Christina could be locked in and allow us to sleep in peace knowing that this probably will not happen to us.

Recent news events have made me very grateful that my daughter's tendency to wander and her inability to be left alone for long periods has made me a super-vigilant parent. I don't have the luxury of being distracted very often. I must know where she is at all times, and rarely leave her with a babysitter who is not a family member. Its difficult to supervise someone that closely at age twelve, when she, an adolescent, pointedly slams the door in my face to get some privacy, yet it makes me feel that a certain type of agony is less likely to happen to me.

 I don't know if I could ever recover from the horror of finding that I left my child to die an agonizing death in a hot car.

When I read the multiple stories of such deaths in the news this summer, I wondered how parents could be so forgetful or careless that they forget their child, and then I remember that two of the holiest people who ever lived, St Joseph and Our Lady, left a twelve year old behind in Jerusalem.  Surely such holy parents were not guilty of sin, but Mary was most likely thinking that Jesus was with the company of men, and St Joseph was sure He was with His mother. Its a familiar scenario to even an obsessed mother like me.

 It happens to the best parents who misunderstand one another, who are overburdened with work schedules, or a large, disorganized family.  It happens to parents who share custody and are not accustomed to caring for their child, and it happens to parents whose motives are questionable. 

The real questions we need to be asking are:

1. How to prevent this tragedy from happening
2. How to help grieving parents.

There is a novel written after the author, Michelle Buckman read such a news article, and pondered for some time what sort of agony the mother who left the toddler in the car endured, and how she regained her sanity. Rachel's Contrition 
is a wrenching novel about Rachel's grief after leaving her child in  a car, and how it hurtled her spiraling downward into near insanity. She was delusional, almost catatonic and lost her home, her husband and custody of their son. She had nothing to live for as she slept her days away in her friend's guesthouse, visited only by her wraith-like, disturbed teenage daughter.

Rachel's Contrition shows how deep is the suffering that these parents endure, and how futile it is to expect them to recover in a short period of time regardless of how many children remain in their care.
The novel  reveals how help can come from the most unlikely of places, which gives the reader hope, how the grace of God, through His friend St Therese of Lisieux, reached into the pit of despair in which Rachel found herself and offered her a way out. 
When it was published, it rocketed to the top of Amazon's list of books for women, and rightly so, as its power and impact are unforgettable. If you like me are puzzled and disturbed by this rash of terrible events. and want to know how you might survive such a tragedy, this book is a riveting read and a consoling companion in this dark journey.