- Happy and Healthy
By Arland K. Nichols
It’s a harmless phrase really.
Many an expectant parent has said it: “We’re happy as long as he’s happy and healthy.” Well intentioned and true, no doubt. Who doesn’t want their child to be happy and healthy? Pregnant women forgo champagne toasts on New Year’s Eve, take prenatal vitamins with DHA and folic acid and make countless sacrifices — all for the health of their child.
But, what if the child to be born is not perfectly healthy? How does a parent respond if the prenatal diagnosis indicates that the child has a birth defect or genetic anomaly such as Down syndrome?
Recently, while waiting with my wife for an ultrasound, I had occasion to think about such questions. In the room next door we heard the nurse call an expectant mother after she had undergone prenatal testing. The nurse reported, “No, no, we have great news for you. Everything looks good. No Down syndrome, no Trisomy, so you don’t need to worry — no need to come in, you can just keep on doing what you are doing.”
I could sense the anxiety and relief on the other side of the phone. It was clear that the woman would have been told to come in immediately if the nurse had different news to share. I could not help but wonder how often that phone call is made and how often the nurse says, “I’m sorry but I have bad news …”
When a woman receives a poor prenatal diagnosis she is likely to be crestfallen and confused, especially if she has little support. The news that a child has a disability is presented and received as an urgent matter that must be “fixed” immediately. As one mother of a disabled child wrote at BeNotAfraid.Net, “Fear is an emotion which can overwhelm a woman who has welcomed her pregnancy only to be told that something is terribly wrong. There is little information, if any, readily available to help the distraught and confused mother-to-be who wants to flee from her situation.”
Rick Santorum with his daughter Bella.
What follows too often leads to a tragic decision. There is a tendency to distance oneself from that disabled child. “Options” are now considered and “termination” typically encouraged.
Sadly, Down syndrome equates to a death sentence as 90 percent of children prenatally diagnosed with the genetic disorder are aborted. Abortion is the greatest threat to persons with disabilities.
This is disheartening, but it need not be this way. Medical practitioners should approach their patients with compassion, tender love and genuine support. They can find resolve in the Church’s teaching that one with mental or physical disabilities, no matter how severe, must be treated as a unique person of incomparable worth, with the same right to life and to health care as anyone else. Every person is made in the image and likeness of God, possesses an intrinsic dignity and is precious in God’s sight.
But, teaching alone is not enough — the Christian community is called to actively support parents who face a negative prenatal diagnosis. For example, Be Not Afraid (BNA) is a unique ministry that provides a community of hope and encouragement for these parents. Making the choice for life is difficult and raising children with disabilities brings a unique set of challenges. BNA’s ministry is a tremendous resource, especially in its publication of testimonies by those who received a poor prenatal diagnosis and chose life, as well as through the numerous means of support offered to parents. When offered supportive care and encouragement following a poor prenatal diagnosis, parents come to understand the blessing of accepting their child unconditionally.
All parents want their children to be happy and healthy. But an aborted child is deprived by his parents of both happiness and health in this life. The aborted child is deprived of the opportunity to ever experience love. Presidential candidate Rick Santorum recently said of his son Gabriel, who survived only two hours after birth, “For two hours he lived a life that knew only love.”
A child who is diagnosed before birth with a disability may have serious health problems, but if given the chance to live, she can experience great love and joy.
This article also appeared in the Catholic Herald.
Arland K. Nichols is the National Director of HLI America. He writes for the Truth and Charity Forum.
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- A Christmas Baby
By Tracy Winsor
As Christmas approached this year, I was waiting for a baby. Not my own child, but one that belonged to me by way of a supportive relationship I have with her mother. We are not sisters or old friends, but rather new friends brought together, surely by an opportunity arranged by God.
You see, I had been invited to an interview on Catholic Satellite radio to talk about my work as co-founder of Be Not Afraid. The topic was poor prenatal diagnosis. The mother had been listening and immediately called in to share the details of her own developing story. Her precious baby girl had a brain anomaly likely pointing to a serious genetic condition often characterized as “incompatible with life.”
The program host asked if I had any words of encouragement to offer the mother. I felt enormously put on the spot, but recall falling into a natural and all-too-familiar conversation with her, “I’m so sorry that you have received such difficult news surrounding your baby girl.” I acknowledged her grief and shock – after all, no one goes into the prenatal testing process expecting their baby will be anything but healthy.
I then assured her that the worst day (the diagnosis day) was behind her, and that with good support she would find this pregnancy and this baby to be a blessing. “And does she have a name?” I asked.
“Yes,” Mom answered, “Corrine Catherine.”
And so, from that moment in August, Corrine was destined to become my Christmas baby. As it turned out, after keeping vigil with her mother via numerous phone calls and emails over several months, and an all-too-brief in person meeting in October, Corrine Catherine arrived the week of Christmas, sheltered in the quiet embrace of her parents, three older siblings, and extended family. She lived less than two hours, but changed her family forever.
I think it is safe to say that no family touched by prenatal diagnosis remains unchanged by the experience. Though most parents do ultimately choose to abort with the news of a medical or intellectual disability, there is every indication that ending the story at the worst possible time, in the immediacy of the diagnosis, presents real risk emotionally. The truth that abortion doesn’t offer a shortcut through grief is a reality seldom shared with parents considering abortion.
Nor are parents generally aware of the extent to which abortion has become part of routine obstetric care when it is determined that a baby has a disability. Results of an American College of Obstetricians and Gynecologists (ACOG) survey reported that ninety percent of the doctors responding considered abortion because of fatal fetal anomaly a justifiable treatment option, and 63% considered abortion a justifiable treatment option because of a non-fatal anomaly. Using a simple semantic slight of hand abortion becomes a treatment option, and medical professionals effectively disengage from the baby with a prenatal diagnosis, and signal that it is reasonable for the parents to do the same. As a result abortion is often presented as the only option to parents who have already bonded with, loved, and named their baby.
Research, however, suggests that many parents are in fact looking for some other option. Most will choose to continue their pregnancy if offered a program of comprehensive support. Parents want something better than abortion. They want someone to affirm the dignity of their child and to accompany them on the lonely and unfamiliar path from the diagnosis to the birth.
Having supported a good many families in the experience of carrying to term and recognizing that there are many reasons for this trend toward abortion following a prenatal diagnosis, I think it also likely that medical providers, just like friends and family, co-workers and communities of faith (all the people who should support parents) find it difficult to be supportive because they are afraid.
Corrine Catherine in her frailty says something to all of us about what it means to be vulnerable. Professionals, friends and family around parents carrying to term are also often struggling to find their way, worried about encountering disability and death. Just as no family is left unchanged by prenatal diagnosis, no person is left unchanged at one of these births. Embracing the brokenness of Corrine Catherine, despite the anguish of being unable to help her survive, teaches us to accept the heart-breaking limitations of life. Ultimately true love involves giving these precious children the look of love they deserve and providing a safe space where the least can be welcomed no matter the cost.
Parents experiencing a poor prenatal diagnosis and those carrying to term would be better served if there was more support for welcoming every life as a gift. For parents and those blessed to know them, the experience of loving in spite of a diagnosis is grace-filled and transformative. One need only read the obituary of Corrine Catherine to see the beauty of a life too brief:
Corrine Catherine was a blessing from the moment her parents knew she existed. When she received a diagnosis in the womb that was “incompatible with life” it did not stop her family from loving her or valuing her place in our lives. In sharing their journey with family and friends, Corrine opened people’s eyes to the beauty of life…Without uttering a word she has communicated the meaning of unconditional love, directed people closer to their faith and explained the redemptive power of suffering. In only an hour and a half, Corrine Catherine shared her special grace with all of her family giving each special moments and memories that will always be treasured. She received a sacred birthday party while being passed around in loving arms. After one final embrace by her mother, Corrine Catherine peacefully fell asleep for her final rest…Her parents and family look forward to being united with her again in our heavenly home.
Tracy Winsor is a contributing writer of HLI America, an educational initiative of Human Life International. She is co-founder of Be Not Afraid, an apostolate dedicated to supporting those who receive a poor prenatal diagnosis. She writes for HLI America’s Truth and Charity Forum.
- Down Syndrome: Toward More Successful Advocacy
By Monica Rafie and Tracy Winsor
As word spread of a new non-invasive, highly accurate prenatal test for Down syndrome, MaterniT21, the headlines could hardly have been more sensational: The End of Down Syndrome! Will We Cull Those with Down Syndrome? Are Kids with Down Syndrome on the Road to Extinction?
This mainstream response seems to suggest a terrible acknowledgment of what happens to babies diagnosed prenatally with Down syndrome. We have been “ending Down syndrome” for years, targeting atypical unborn children as we journey down a road that ensures a decreasing Down syndrome birth rate.
Just last week, a Time magazine article reported statistics pulled from a 2009 edition of the Archives of Disease in Childhood. As a result of more sophisticated prenatal screening, and with nine out of ten babies aborted following the prenatal diagnosis of Down syndrome, the birth rate for these children has been dropping for decades, decreasing by 15% between 1989 and 2005. This is particularly shocking as the impact of increasing maternal age during the same period should have resulted in a 24% increase in the Down syndrome birth rate.
What makes MaterniT21 (and all the new non-invasive prenatal tests based upon maternal plasma DNA) different and foreseeably catastrophic is that it will draw in a larger percentage of pregnant women. Those who reject invasive testing because of associated risks are likely to consent to a non-invasive test. Advocates for those with Down syndrome have braced for just that reality, predicting that the Down syndrome birth rate (roughly 1 in 700 now) will drop sharply once non-invasive tests such as MaterniT21 are more widely available.
With an abortion rate that has consistently been around 90%, shouldn’t we also be asking ourselves why our best efforts at advocacy for those prenatally diagnosed with Down syndrome have failed? And the related, and more important question, how can we improve our advocacy efforts?
Persons with Down syndrome and their families are blessed to have strong communities of support, both locally, and nationally, through such organizations as the National Down Syndrome Congress (NDSC), the National Down Syndrome Society (NDSS) and their local affiliates. These organizations have worked very hard for their constituents to gain access to education, employment, and healthcare opportunities as well as representation among those granted federal funds for medical research. They are to be commended for successful advocacy in these areas.
Over the years, NDSC and NDSS have offered multi-pronged, intelligent, and inspired efforts surrounding the issue of prenatal diagnosis. Both organizations have worked to improve the public profile of persons with Down syndrome using traditional and social media. They have addressed the discriminatory practice of targeted prenatal testing, produced positive, accurate, and updated information for parents experiencing a prenatal diagnosis of Down syndrome, disseminated materials aimed at improving the sensitivity and response of doctors, genetic counselors and other medical professionals. They have even organized local in-person outreach initiatives to offer peer support to parents at the time of diagnosis. None of these efforts, however, have been successful in bringing society at large to a fundamental shift, or tipping point, whereby babies diagnosed prenatally with Down syndrome are more likely to be carried to term and welcomed at birth by their parents.
The primary threat to the lives of persons with Down syndrome is no longer prenatal testing and diagnosis; nor is it ignorance, outdated information, lack of peer and professional support, nor even insensitive communication at the time of diagnosis. The primary threat to the lives of persons with Down syndrome is abortion. Yet, the major Down syndrome organizations are often unwilling to face that issue head on.
In 2008, NDSS and NDSC met with the American College of Obstetricians and Gynecologists, American College of Medical Genetics, and National Society of Genetic Counselors, and in 2009 released a jointly-written document titled, “Toward Concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives.” The document addresses a handful of “misconceptions” about the organizations and their practices. The collaborative statement acquitted medical professionals of any “eugenic” motives surrounding the use of prenatal screening and testing, and affirmed that genetic counselors do not engage in directive counseling. Of all the possible misconceptions to present, the single one brought forth by NDSC and NDSS is to dismiss any idea that they are “pro-life” organizations.
Dr. Brian Skotko, a Harvard educated Pediatric MD, Certified Geneticist, and specialist in Down Syndrome at Children’s Hospital Boston, Board Member of NDSS and NDSC, author of numerous articles and oft-cited research about families of persons with Down syndrome, most recently wrote about the expected effect of non-invasive prenatal diagnosis in a USA Today column. With a statement that perfectly echoes the positions of the national Down syndrome organizations, Skotko clearly indicates that Down syndrome advocacy ends where expectant parents’ decision-making begins: “I care deeply that patients receive accurate, up-to-date, balanced information so they can make informed decisions. Yet, as a physician, I am not in the business of telling expectant couples what pregnancy decisions they should be making when their fetus has Down syndrome. That is their decision.”
Skotko continues, “But the decision no longer needs to be made in a vacuum, nor should it be made with lingering misperceptions that are still whispered in our society.” With an abortion rate close to 25% for all babies nationwide, and in some areas, as high as 46%, perhaps it is worth considering that it may not be lingering misconceptions that dispose parents toward a decision to abort after diagnosis. Perhaps instead, the abortion rate for Down syndrome is the natural consequence of a diseased culture, influenced by 40 years of abortion on demand. Perhaps most abort simply because they can.
There is a dawning sense that the problem is much more complex than lingering misconceptions. Advocate, attorney, and father, Mark Leach, in The Prenatal Testing Sham argues that Down syndrome advocacy focused on informing expectant parents with accurate and up-to-date resources about raising a child with Down syndrome is at this point the only card left to play: “Absent some fundamental societal change, these offsetting resources are really the only chance we have to turn the tide of decisions following a prenatal diagnosis.” Leach may be correct in his argument, but there is little evidence to support the hope that these resources will to any significant degree affect the numbers of parents who would otherwise abort.
Renate Lindeman, President of the Nova Scotia Down Syndrome Society, and mother of two children with Down syndrome, in anticipation of the imminent release of non-invasive prenatal tests, writes in the Canadian Medical Association Journal article,“Take Down Syndrome Out of the Abortion Debate”: “The best way to create a society that embraces (genetic and other) differences is to educate and engage the public and to support individual choices, whatever they are.” There has been no shortage of support for individual choices for 40 years. Why then are we still discussing “the best way to create a society that embraces difference”?
If the future plays out as has the past, advocacy for the child with Down syndrome in the womb will, in fact, be the only card left to play. What’s missing in the otherwise comprehensive approach of the NDSC and the NDSS is the simple and confident assertion that abortion is not an appropriate parental response to the prenatal diagnosis of Down syndrome. If the strongest, best advocacy refrains from articulating that even a fully-informed decision to abort a baby diagnosed with Down syndrome is a poor one, then who will?
If it is our goal to discover the best way to create a society that embraces (genetic and other) differences, can we even begin such an endeavor when we accept the idea that the unborn baby is so other, so different from us that they are not worthy of protection? Authentic and effective Down syndrome advocacy must begin by embracing and advocating specifically for the baby with Down syndrome in the womb. Until the Down syndrome advocacy organizations recognize this truth, the recurring headlines will continue to read, “The End of Down Syndrome!”
A blueprint for better disability advocacy can be discovered in the Pastoral Statement of U.S. Catholic Bishops on People with Disabilities. Its vision is rooted in justice and is hopeful that change can be achieved, with no hint of resignation to the failure of individuals or the challenge of “contemporary circumstances”:
We look to the future with what we feel is a realistic optimism. The Church has a tradition of ministry to people with disabilities, and this tradition will fuel the stronger, more broadly based efforts called for by contemporary circumstances. We also have faith that our quest for justice, increasingly enlisted on the side of individuals with disabilities, will work powerfully in their behalf. No one would deny that every man, woman and child has the right to develop his or her potential to the fullest. With God’s help and our own determination, the day will come when that right is realized in the lives of all people with disabilities.
Monica Rafie and Tracy Winsor are founding partners in the work of Be Not Afraid Ministry, an outreach to parents grappling with prenatal diagnosis. Monica and Tracy are Contributing Writers for HLI America, an educational initiative of Human Life International. Their recent articles may be found at HLI America’s Truth and Charity Forum.
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- In Thanksgiving for Life
By Brian Barras, DDS
With Thanksgiving just behind us and Christmas fast approaching, it is a great opportunity to reflect upon and be truly thankful for all life. As a resident in pediatric dentistry, I have been blessed to serve children with various special medical needs. My colleagues and I have a unique practice – we treat the dental needs of children who have cancer, severe heart conditions or other debilitating health challenges.
One of my recent patients was Jacob. He could not speak, had slight vision out of one eye and had hearing difficulties. He leaned to his left side markedly, his hands and arms looked somewhat distorted and he had a constant drool. At the beginning of our appointment, I crouched down, looked the ten-year-old in the eye to introduce myself and asked how his day was going. His mom quickly informed me that because of his medical condition, Jacob could not understand me that well and could not verbally respond.
It helps to have tips from parents on what to expect in the way of responses; but whether or not the child can understand or see me, he deserves to be treated the same as any other person. In fact, such conditions move me to talk to these patients more or touch their hand or shoulder more often, because I know that the world may treat them differently. There is sometimes a tendency to talk around these children as if they were not in the room. We might be afraid to reach out to them because we rarely see up close how fragile life can be for those with severe disabilities.
Jacob’s mom shared with me that his favorite team was the Dallas Cowboys. I was moved with joy when Jacob smiled as I talked about football. Though he could not speak, he communicated with a smile, which meant everything to me by showing that Jacob does understand his surroundings. The appointment went well, and I considered it a success because I made a connection with Jacob.
“But to all who received him, who believed in his name, he gave power to become children of God; who were born, not of blood, nor of the will of the flesh, nor of the will of man, but of God.” (John 1:12-13)
We are reminded by Saint John that we are all children of God. Whether a person is 3 months old in the womb with a cleft palate, 10 years old with Down’s syndrome or 99 years old with Parkinson’s disease, we are all called to respect the dignity of each and every person. As a father of three children, I thank God for the health of my own children, and I pray for the well-being of the families I work with each day. I can only imagine how difficult it must be in Jacob’s case for his mom to feed him, pack up his wheelchair for each car ride, or even to brush his teeth. For Jacob and his family, even the routine events in life can be extremely difficult. It moves me with both compassion and admiration for each of these parents and other caregivers. I have noticed that the parents of children with special medical needs are overwhelmingly some of the most caring, loving and patient people I have ever met. That is something I try to emulate in my own house as I strive to be a loving husband and father.
I hope that during this season of Advent, and in the coming celebration of Christmas, we can truly thank God for His presence in our lives, and that may we have a renewed sense of love and respect for all human life. To be alive is simply a miracle in itself.
Brian Barras, DDS, is a husband, father and pediatric dental resident in Dallas, Texas.
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- On Life Choices, and the Blessings that Follow
By Christopher Casey
Growing up in a large Cajun/Irish family in southeastern Louisiana, I always imagined my future self as a family man. That future became uncertain, however, when I was diagnosed with Stargardt’s macular degeneration as a teenager. By my 17th birthday, I was already past the medical and legal threshold of blindness, and, to make matters worse, Stargardt’s is usually hereditary.
By my entrance into adulthood, the odds were definitely stacked against my life plans. Inability to make eye contact and inability to drive a car are not assets in the dating world. Doctors were advising me to get genetic counseling, which sounded like a suggestion that I not have children. And how could I support a family? Statistics indicate that 70 percent of working-age blind people (legally and totally blind) do not have a job, and the fortunate minority face disparate wages.
I won’t tell you that I had a grain of faith or hope, but I chose to act as if I did, and maybe that is what counts, because I have been blessed.
Earlier this year, my wife Jan and I welcomed our ninth child. I have a steady job as an attorney, and Jan home-schools the children.
I met Jan through family. It seemed “meant to be” from the beginning. I don’t know how Jan looked beyond my disability and the related potential for difficulties in family life, but she did. She was the answer to fervent prayers.
While Jan seemed a gratuitous blessing, the ability to support a family would require tremendous work and persistence on my part.
I knew that I would need impressive academic qualifications to compete for jobs with “normal” people. I studied accounting in college; which is difficult when you can’t see the board. I tried a few times to get assistance from professors, but that usually didn’t work. Most thought I was exaggerating and, to the extent I managed to convince them, that I did not belong there.
To make a long and painful story short, I learned to teach myself and did well in college. I won a scholarship to law school and graduated with honors.
If college seemed like a 2,000 foot vertical cliff, the employment world was a 20,000 foot mountain waiting at the top of that cliff. Right after landing my first “real” attorney job with a local firm, I was asked to leave or accept demotion to research assistant at half salary. They had not realized that I was disabled, and, while there was no question of my knowledge, skills, or ability, they were not going to present a visually impaired associate to their clients.
It seemed to me that job stability would be more possible in a large organization that at least paid lip service to equal opportunity. After many unsuccessful applications for attorney positions with large private and government organizations, I finally got hired—as a customer service/teleservice representative.
I’ve remained employed with the same organization for 17 years, and my work has always been praised. The only problem seems to arise when I suggest that I should be given the same opportunities as other people. The teleservice managers stopped speaking to me when they found out I wanted an attorney position, and, after I got an attorney position, I went 15 years without promotion.
The great struggle in my home life is to keep indignation in its proper place. For many years, I was very passive about equal opportunity because I was so thankful to have a job—any job. My children have given me a reason to struggle for equal opportunity, though. Not only have I come to believe that they deserve the full fruits of my labors, but it distresses me to think they will face similar discrimination if they inherit Stargardt’s and I do nothing to change the environment.
Enduring and battling discrimination can be angering, frustrating, and exhausting. My great struggle is to keep it in its place—to fight the good fight and appreciate my blessings at the end of the day. To the extent that I let indignation affect my health, my mood, or my attention, I am not helping my family.
While a work in progress, my home life is one of happiness in the true sense of the word—happiness in being given the opportunity to work, to raise a family, and to participate in God’s plan of life and love.
We are fairly typical, I think, for a large home-schooling family. We strive for monastic-style order at the brink of anarchy every day. My disability adds a twist that could be seen as humorous by an outside observer and which no doubt will seem the same to us if we are blessed with the years to look back. As an example, when I am compelled to say something sternly like, “Margaret, how many times have I told you not to climb on the kitchen counter?”, I often get an answer like, “I’m not Margaret, Dad. I’m Madeleine.” My complaint loses some steam with my retort, “well, how many times have I told you not to climb?”
When we dare to go out in public as a group, we usually get two kinds of comments. Older people tell us they had a large family and how good it is to see one. To younger people, we’re more of an oddity. Sometimes they ask how many children we want. When I respond that we want two, my intent is humor with truth. I’ve come to realize that true happiness has little relation to doing what one wants.
Looking back on my life so far, I attribute my “successes” to the choices I’ve made with Jan in favor of life—the decision not to avoid children, the decision not to try to engineer or select genetically perfect children, and the decision to accept as many as God should will. So it was not good news to me when I learned that trials are underway for embryonic stem cell (ESC) treatment of Stargardt’s.
It would not surprise me if embryonic cell treatment turns out to be less than fully successful for Stargardt’s since modern taxpayer-funded science appears to be more motivated by desire to push the moral envelope than serving life. To date, decades of ESC research have yet to yield a single therapeutic cure, while stem cell research utilizing donated stem cells has already yielded dozens, and it seems that more are being announced every month.
But even if it turns out to offer a quick, full, and permanent cure, I’ll have to pass. Of course I would like to see normally—to toss a baseball with my sons, to see my daughters sing on stage—but I could never take advantage of ESC treatment. Jan and I have loved and worried about our own children since they were embryos, and we’ve even mourned the loss of one.
The very thought of creating or even destroying human beings for research purposes is horrible to us; and given the distance we have traveled as a family, we feel like we owe it to families discerning such treatment to know that there are choices. And the choice for life may be difficult in some cases, but it is always the best in the long run.
Christopher Casey is a guest writer for HLI America’s Truth and Charity Forum. This article is one of a series on HLI America’s Truth and Charity Forum about families who choose life in the midst of challenges to do so, and who find blessings and hope in the challenge. To submit a testimony, contact HLI America at hlia@hli.org.
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- The Family and Disability – Autism Spectrum Disorder (ASD)
By Craig S. and Anne T. Ortega
In his first Epistle to the Thessalonians (1 Thess 4:3), St. Paul reminds this community and us, “for this is the will of God, your sanctification.” As a family, our sanctification has been through the pathway of disability; in particular, by way of our 15 year-old daughter who was diagnosed with autism at the age of five.
My wife and I have been married for almost 17 years and I was a stay-at-home father until our daughter was almost two. Autism is a spectrum disorder, which means there are different degrees of severity and a multiplicity of symptoms. Autism Speaks, the nation’s largest science and advocacy organization, describes the disorder as
“a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD). The other pervasive developmental disorders are PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders. Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. The vast majority of cases of autism are idiopathic, which means the cause is unknown.”
Having said this, the origin for every reflection on disability is grounded in the basic beliefs of Christian anthropology (cf. “Message of John Paul II on the Occasion of the International Symposium on the Dignity and Rights of the Mentally Disabled Person.” See also, “Conclusions of a Vatican Conference on the Family and Integration of the Disabled” and “Jubilee of the Disabled: Homily of John Paul II“). That is, disabled persons, irrespective of their challenges, are, in the words of Blessed John Paul II, “fully human beings and possess the sacred and inalienable rights that belong to every human creature.” Every person has an unrepeatable dignity and incomparable value because of who they are as children of God, not for what they can or cannot do. People are not means to an end, to be measured in terms of productivity and efficiency.
As Blessed John Paul II put it in his Message on the Mentally Disabled Person,
“a society that made room only for its functional, completely autonomous and independent members would be unworthy of the human being. Discrimination on the basis of effectiveness is just as disgraceful as racial, gender or religious discrimination. Thus, for disabled people, as for any other human being, it is not important that they do what others do but that they do what is truly good for them, increasingly making the most of their talents and responding faithfully to their own human and supernatural vocation.”
As a family, we are parishioners at St. Edith Stein Catholic Church in Katy, TX and members of Katy Autism Support, a nonprofit organization that supports families living with autism (www.facebook.com/pages/Katy-Autism-Support/126446120715312). This group also has a Faith and Disability Forum which, among other things, includes organizing annual symposiums. Our daughter attends a public high school, takes general education classes and participates in several extracurricular activities. She also is an altar server at our parish and she participates in the senior high youth group.
My wife and I prefer to view our vocation as a sacred mission that goes deeper than advocacy. As the Catechism of the Catholic Church explains, “by reason of their special vocation it belongs to the laity to seek the kingdom of God by engaging in temporal affairs and directing them according to God’s will…”
We have attended a number of workshops and conferences. When a child or adult is diagnosed with ASD, one of the first discoveries is that each person on the spectrum is different in terms of characteristics. Moreover, autism’s dynamics can include a variety of behaviors, needs and abilities. Some children and adults are non-verbal and may need constant care while others are able to speak and may need different types of support in the areas of social communication, independent living, hygiene, and safety awareness. The causes of autism are unknown and at present, there is no cure. However, some of the research suggests that variables such as vaccines, the environment, genetics, and pesticides, among other things, may be involved.
Autism is a lifelong disability and presents a different set of challenges at each stage of the life cycle. For example, parents of newly diagnosed children will have questions and concerns those parents of adolescents and adults may not. Questions like What do the acronyms IEP and ARD stand for? and How do I know if a certain behavior is a result of autism or just a part of adolescence? are not unheard of. Regardless of the child’s age, one question I have heard from many parents is Who will take care of my child when I die?
Not unlike many families living with autism, my wife and I struggle with the daily demands of caring and planning for a child with special needs. Some of these include budgeting expenses for needed services, growing in patience (the wait list for other services could be 8-10 years), searching for funding to pay for educational support that could include independent living and social skills training, preparing for adulthood by establishing legal guardianship of your child and erecting a special needs trust, among other responsibilities.
On one occasion, I heard a priest mention that the worst form of poverty is isolation. One area of particular struggle has been the virtue of friendship. Having friends is important to any person, regardless of age or condition. However, for teenagers on the spectrum, learning how to develop friendships can be particularly painful. Our daughter has difficulty with social communication and as a result, the understanding of how to initiate, maintain and when to end a conversation does not come easy. At times, my wife and I have observed our daughter being treated “differently” in various social circles. For example, whether we are participating in an extracurricular event at school, in a parish activity or even among family members, she is sometimes not acknowledged or left out of group undertakings that her peers are engaged in. On occasion, our daughter has cried and asked us why she is treated differently and has no friends. At the same time, we are trying to teach her forgiveness and understanding and that true friendship is not the amount of “friends” a person has on Facebook but rather, those who seek your improvement through regular personal contact and lead you closer to Christ. To be asked by a group of students to assist them with making copies at a copy machine, to be included in a conversation or to be asked how school is going would make all the difference. If we neglect the little things, then we have scorned the Way.
These are just a few of the many sacrifices and challenges that parenting a child or adult with special needs requires. The “Good News” is that all of these efforts can be sanctified and can become tributaries to growing in virtue. As St. Paul stated in his Epistle to the Galatians, “Bear one another’s burdens, and so you will fulfill the law of Christ” (Gal 6:2). Moreover, thanks to our Lord, disability does not have the last word; love does. In the end, charity bears all things and is the measure of all holiness. I once asked a priest, “Why is autism in our family?” His response I have never forgotten, “So that you may learn to love as Jesus loves.” Deo gratias!
Craig’s blog address is www.faithandautism.blogspot.com. This article is one of a series on HLI America’s Truth and Charity Forum about families who choose life in the midst of challenges to do so, and who find blessings and hope in the challenge. To submit a testimony, contact HLI America at hlia@hli.org.
- The Story of Laci Faith Lowell
By Matt Lowell
Let me just start off saying that abortion never had a chance with us.
We found out in November 2005 that we were going to have a baby. I had just gotten out of the Army, and we had settled in Cibolo, Texas- right near San Antonio. When we first started trying to have a baby, we were surprised at how long it took. I have always joked about my little “swimmers”, and how they were probably swimming in circles. So we prayed, and we told Jesus that if he blessed us with a baby, we would educate our child about Jesus and raise him/her Catholic. Shortly after, we learned that Becky was pregnant.
Becky was the office manager for an Ear, Nose, and Throat doctor and she continued to work. She had always eaten well, and maintained a very active lifestyle of running, walking, biking, and working out; so we felt very good about everything. Around March 2006, however, we went in for a sonogram and our entire happy existence came crashing down around us.
Becky’s doctor said that it was hard to tell, but she thought that she saw a cleft lip and palate. But just to be sure, she was going to send us to a specialist, who told us that not only did our baby girl have a cleft lip and palate, but she also had no stomach, and problems with her heart. He needed us to come back in a week to try another test.
After a very difficult week of waiting, the doctor reaffirmed his earlier suspicions ended the visit telling us we had “options”. We asked, “What do you mean, options”? And then it clicked. He was referring to abortion.
We asked the “specialist” if we would lose our baby prematurely due to the seriousness of the problems. He said that that would more than likely happen, to which we replied that if this baby wasn’t going to make it, it would be God’s decision to terminate, not ours. We had, after all, made a promise to Jesus.
Laci in the NICU
I think we went back for one more visit where the specialist saw the stomach. He had to wait for Laci to open her mouth and swallow some of the amniotic fluid, and he saw it. So now all our little girl had a common facial birth defect. Why would a doctor suggest abortion on such a preliminary diagnosis?
Soon after, in July, Becky developed preeclampsia and was put on bed rest on a Wednesday with a stress test set up for that Sunday. During the appointment, the doctor said that Laci was in distress, and he needed to pray about what to do. So he left the room for about 20 minutes, came back and said we were going into surgery. About half an hour later, Laci Faith Lowell was born. She was about one month early, and weighed 3lbs. 15oz, and she had the most beautiful bilateral cleft lip, it was perfectly symmetrical. About an hour later she had problems breathing and was on a MEDEVAC to Christus Santa Rosa, where she would stay for two months.
Once at Santa Rosa we started to learn of some other health problems Laci had going on. In addition to the cleft lip and palate, she was deaf, possibly blind, and had heart problems (ASD, VSD, PDA, pulmonary stenosis). We were very concerned with her brain function, and a CT scan proved “all the parts to be there” for which we were very grateful.
When we first learned about all of her problems, I was very angry. Not with Becky, or with Laci, but with God. And I said it….out loud. We even went to our church to chat with our priest. I pretty much demanded answers from him. I now realize that I wasn’t really rational at that point.
We visited Laci every single day she was in the NICU, and we stayed as long as they would let us. I slept on her little table with her, Becky held her “kangaroo style” (skin to skin), we talked to her and kissed her, and held her. As time progressed, we realized that this was a little human, despite all the issues, and she needed us to hold and love her, to be her everything.
Laci resting
We left the NICU in September with the order to get our baby up to 10 lbs, so she could have heart surgery. We did, and her surgery was a success; however, she was left with a leaky pulmonary valve, which will have to be replaced periodically throughout her life.
We enrolled Laci in a place called Sunshine Cottage, a school for the deaf in San Antonio, TX, where we learned that Laci was in fact deaf in her left ear, but that she did have some hearing in her right. Basically, she could hear anything louder than a jet engine from her right ear. Furthermore, we learned that Laci did have some sight out of her right eye. There was no telling how much, but she was recognizing our faces and reaching for toys. Laci was fitted with hearing aids while we waited for her to get old enough for a Cochlear Implant.
At this point Becky and Laci were heavily involved with ECI (Early Childhood Intervention- a Texas based program). We had a couple surgeries to fix her cleft lip and palate, and then we got a Cochlear Implant!! What a change that made! She started crawling soon after and became very interested in communicating with us. That little brain was working!! She started Preschool at Sunshine Cottage, and has just graduated Pre-K, getting ready for Kindergarten next year. She is doing well keeping up with her classmates both orally and visually. In some cases, being the youngest in her class, she is doing more than expected of her!
Laci walking
So here we are today with our beautiful Laci Faith Lowell. We are thankful that God never took her from us. We are thankful that she is doing so well. We are amazed by Laci every day. Laci says and does things that other kids don’t do. She just turned 5, and she commonly uses the following words correctly: great, fabulous, delicious, amazing, thanks, no thanks, and many, many, more. Her favorite color is any shade of green, and she loves TinkerBell and princesses. Laci is learning to fish with me, and has no fear of the bait, or the fish itself- although we are working on patience. We are so blessed to have her in our lives. The way we look at it, God gave us Jesus to be closer to Him, and Jesus gave us Laci so we could be closer to Jesus.
Abortion never had a chance. 
Matt Lowell is a guest writer of HLI America’s Truth and Charity Forum.
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- “We’ll prepare you to terminate…”
By Sheri Demois
As I once again give the car keys to my now six foot tall son, I am reminded of the decisions surrounding his birth. How can it be that I was living in a world where, with only my signature, I could have opted to take his life away from him – his first “Sesame Street Live” performance, his first day of kindergarten, his prom. And what about the many people, teens and adults, he has touched through his leadership, his music, and sometimes simply his presence. God knew exactly what He was doing when He created Justin and to think that I could have altered that plan is frightening.
I was part of the “me” generation that grew up trying to make sense of the saying, “if it feels good do it!” There weren’t many things that I wanted that I didn’t have…except of course, a baby. My husband and I tried to get pregnant for many years, but all attempts were unsuccessful. It wasn’t until years later, after a few surgeries and seemingly never ending visits to the doctor, that we were finally gifted with parenthood.
Other than the fact that I was considered in the “at-risk” age category, my pregnancy was wonderful and uneventful. I gained the proper amount of weight, took my prenatal vitamins, and made all of my appointments. You can imagine, then, my surprise when I was directed to attend “Genetic Counseling” with my husband. My doctor explained it in such a way that made it sound simple; just one more step on the path to us becoming parents and having the opportunity to hold our baby. Well, if everyone else was doing it, then we would too! After all, this was our first time as parents and we wanted to get it right.
Our appointment for genetic counseling was scheduled and we eagerly awaited our turn to be called into the private rooms in the back of the offices. There was even “elevator music” piped into the room to help us feel relaxed. We made our way back to the consultation room and spent the next 30 minutes listening to our options for “terminating the pregnancy” in the event our baby was found to be abnormal. Instead of offering alternatives to properly care for a child with a genetic abnormality, our counselor focused on our ability to make the choice to terminate the pregnancy. She said that there were times when bringing a child into the world with genetic issues would not be in the best interests of the child. We were overwhelmed with so much information in such a short period of time and had never considered the possibility of abortion. Terminating the life of our baby was just not an option.
My husband and I left this appointment opting not to have amniocentesis. This session opened our eyes to the ease with which many in the medical profession offer abortion as an alternative to a “less than perfect” experience of raising a family. We were ready to raise the child that God chose for us – whether that meant a hardship for our family or not. We knew that even if our child was born with a genetic abnormality, God would provide the means for us to care for him.
Sheri Demois is a guest writer of HLI America. She writes for the Truth and Charity Forum.
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- Healing through Helping Others
By Anonymous
(This is the first in a series of testimonies from women and men who have found hope through their struggle with infertility and sterilization.)
In 2001, my husband and I married and began our journey with infertility. I had been diagnosed with polycystic ovarian syndrome (PCOS) prior to our marriage and we knew that achieving pregnancy would be difficult. We also knew that as Catholics, artificial reproductive techniques were not an option, so through my regular ob/gyn we tried “natural” treatments.
In 2003, once we reached the limits of these efforts without becoming pregnant, we were referred to an IVF doctor who would “respect our decision to not do artificial technologies.” After some tests, consultations, and many arguments defending our faith, we were told that if we didn’t want to do artificial techniques that we would never have our own biological children. We were devastated, but started down a path of saving and looking into adoption.
6 short months later, with no medical intervention or treatment, and only by the grace of God, I conceived our daughter. My pregnancy was troubled at the beginning, but our sweet baby made it through and is now a vibrant 6 1/2 year old. Through this process, my husband and I felt like we encountered one road block after another, and that there had to be something better. After I gave birth, my PCOS and PMS worsened and our hope for another child faded.
It was then that I stumbled upon the Pope Paul VI Institute and the Creighton Model Fertility Care System. I immediately began the system and began working with a NaProTechnology trained medical consultant. In 3 months, they had completely changed my quality of life – I have been able to regulate my system and truly understand my fertility. We have not had another child, but my husband and I have come to accept our cross of infertility and move forward with God’s will for our family. We cherish every moment we have with our beautiful daughter.
This journey has also led me to become a Certified Fertility Care Practitioner, teaching women and couples the Creighton Model system. I work with my local parish and its marriage preparation program to make this information known to all. Working with post-abortive clients, some who are currently using contraceptives or who have gone through artificial reproductive technologies; I have seen many become knowledgeable of their bodies; and become empowered to change their actions. It is such a blessing to watch their minds and hearts open up to life, and also to watch the stress in their relationships fade. I feel that it is my mission to spread the news of this amazing women’s health system to others. Teaching this system was a crucial step in helping me and my family heal through our infertility.
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- New Poll: The Pill and America: What women don’t know may be hurting them
On behalf of HLI America, the polling company™, inc./WomanTrend conducted a nationwide online survey of 808 women aged 15-44 on knowledge, use, and opinions of hormonal contraception. the polling company™, inc./WomanTrend is a nationally-regarded primary research and consulting firm with a broad base of clients. WomanTrend tracks and interprets the social, cultural, financial, professional, and health trends influencing – and being influenced by – women.
Download/View the Survey
- Oral Contraceptive Use and Estrogen/Progesterone Receptor–Negative Breast Cancer among African American Women
Download this powerful research article on the devastation wrought upon African American women by the use of “The Pill”. 2010OCPs-BrCaBlacks.pdf
- The Kids I Almost Missed
I was one of those little girls who hovered around babies waiting for a chance to hold them. My baby dolls were real to me. And even though I had the joy of caring for my two little brothers, as they grew, I sometimes felt disappointed because we had such a small family; only six children.
So when my first son, Aaron, was born, my heart brimmed with happiness. As he grew, I thrilled at his quick mind and curiosity for the world. Son number two, Luke, was a cute, cuddly little blonde with a sweet temperament. Our third boy, Tyler, showed his lively personality and athletic prowess early. I loved my little boys with all my heart, but were three little bundles of joy enough? I decided they were. Or rather, I was influenced by the world around me that three was plenty.
My husband, Mark, was not so sure. I knew the Catholic Church taught that artificial birth control was against God’s plan, but being surrounded by Catholics who had no qualms with it, I comfortably ignored that teaching. I decided to have surgery for a tubal ligation. Two days prior to surgery, during the pre-op exam, the doctor explained the failure rate was only 1 in 500. Those odds were unsettling. “Not bad odds for the lottery,” I thought. A failure could result in a tubal pregnancy which could result in death. I canceled.
The next line of attack was to go on birth control pills. There were problems so I stopped taking them. I became pregnant the following month. When Mark heard the news, he announced, “I’ve been praying for this.” I wanted to know if he meant that figuratively or had he gone and prayed behind my back? It turned out the big sneak had literally been praying on the sly. Regardless, a die-hard baby lover like myself could not help but rejoice at another little soul.
Jacob was born on May 13, the anniversary date of Our Lady of Fatima’s first appearance in Fatima, Portugal. It was also Mark’s birthday and Mother’s Day. Mark too had been born on Mother’s Day thirty-three years earlier. Happy Birthday Mark–from God.
During this time in our lives, we had begun reading about various Marian apparitions and were inspired for the first time, to pray the rosary. We stopped missing Sunday Mass and started to learn more about our faith. Still, we were not fully converted yet–particularly when it came to family planning. I had insisted Mark have a vasectomy. He finally relented.
Initially, I was oblivious that we had done anything wrong. But gradually, as I grew to desire God’s will in my life, started making visits to the tabernacle and continued praying the rosary, a feeling grew in me. I realized that the Church, which Christ had founded to guide us until the end of time, had authority to teach on spiritual matters, including procreation. I had been given no such authority.
I shared my feelings with Mark. He was less than thrilled since he never really wanted to go along with my plan to begin with. As a matter of fact, he accused me of being like Eve. “You are right,” I agreed. “But remember, Adam was kicked out of the garden too.” We began praying that God’s will would be done in our lives, including whether we would have more children. We determined that if it was God’s will, Mark’s vasectomy would fail.
But one night, I had a dream in which I saw two babies; one blonde and one dark-haired. I felt an intense love for these babies as if they were my own. At the end of the dream I was made known that these were babies God had planned for us, but because of our sin, they would never be born. I woke up feeling like a mother who just lost her babies. I knew the only way to get to them was to convince Mark to have a reversal of his vasectomy.
When Mark came home from work the next day, I approached him with my idea for a reversal. He would have none of it. I barely got two sentences out of my mouth before he announced the subject was officially closed. Now, it was my turn to pray behind Mark’s back. “Okay God,” I prayed. “I want to do Your will but I am powerless to change Mark’s mind. I’m putting everything in Your hands.” Then, I just kept praying.
Several months had passed when one morning we went out for breakfast after Mass, Mark casually wondered out loud how much a reversal operation would cost. “I know,” I announced. Before Mark had shot my idea down, I had called the doctor’s office to get all the information.
“Well, I can’t get off from work this month,” Mark said, “but next month I could go in and get it done.” I was shocked and thrilled. We did not have the money to pay for it, but we determined we could probably make payments.
“But, what changed your mind?” I finally asked, wondering what had caused such a drastic change of heart. His answer took my breath away.
“I had a dream last night,” Mark said. “I saw two babies that God had planned for us.” I had never told a single soul about my dream.
Three months later we were expecting a baby. I had a strong feeling that it would be our first girl and God wanted us to name her Mary after the Blessed Mother who had intervened for us. We had never considered the name with any previous pregnancy. I wrote on a slip of paper, “Yes, I think Mary would be a good name,” and tucked it in my wallet. I figured that when God let Mark in on the plan, I would pull out the slip and show him.
Our blond-haired baby girl, Mary, was born on December 22, 1993. A few months before her birth, we inherited the exact amount of money we needed to pay Mark’s reversal surgery in full. (As an aside, within the year, the two other couples who had begun a family prayer group with us also had babies; another Mary and a Maria. When we began meeting, not one of us planned to have more children.)
Dark-haired Teresa was born on my birthday, April 18, 1996. I thought we must be done now that we had the babies from our dream. Mark, as usual, said he thought ten would be a good number of children. While praying about it, I recalled that when St. Maximilian Kolbe was young, he had received a vision of Our Blessed Mother. She had shown him two wreaths of roses; one of red representing martyrdom, and one of white, representing purity. She asked him which he would like to choose. He chose both. I wondered, if like St. Maximilian, could we volunteer to take on more than God asked? We prayed for guidance.
John was born on August 31, 1999 and Isaac was born on his sister Mary’s birthday, December 22, 2001. There could be no greater blessing on our family than our precious children. The kid’s love for each other runs deep. The older children–and even their friends–especially delight in these two littlest boys. As the mother of eight children, I shudder to think of what I would have unknowingly missed out on had I not begun to seek God’s will in my life.
Yes, I am a busy mother. Our oldest is in college and the youngest is still in diapers. I know that one of the biggest draws for my oldest son to come home for visits, is to spend time with his younger siblings.
Most mothers would say there’s nothing more precious or valuable in their lives than their children. I couldn’t agree more. I am so thankful to God that He opened my eyes to what I had almost missed out on–the opportunity for Him to bless me further.
Update: Since this story was published, we adopted two AIDS orphans from Kenya to make us a family of 12. Calvin just graduated from college and will be going to medical school in Jan. and his younger brother, Joash, has a 5-year running scholarship. God’s blessings have been abundant.
This was originally published in the Amazing Grace for Mothers book, which Patti Armstrong co-authored.
- Shocking Statistics About The Pill
HLI America is pleased to present this pdf flier, suitable for printing and distribution, detailing 11 shocking statistics about birth control and the pill that promises to raise the eyebrows of even the most pro-contraception person. Order this brochure for widespread distribution!
