Saturday, December 29, 2012
Wednesday, December 19, 2012
Christina at Camp Care
Camp Care is a free day camp held twice a year at Crossroads Physical Therapy in Columbia, CT, and features fun and therapy for special needs children and their families. This was our first year to participate, though Gabbi was a volunteer in summer 2010.
One of the highlights of the three day camp is a delicious Turkey Dinner with Santa. Christina was not too sure if meeting Santa was a good idea, and we had never attempted a Santa photo for this reason, but he is very good with our kids and soon talked her into giving him her hand, while remaining on Daddy's lap.
There were many parts of Camp care we enjoyed; the pizza party, Bowling, the Boot Camp,where Christina exercised with the group while we were meeting new parents, the free massage for parents, and especially the beautiful concluding Mass on Sunday, followed by the Divine Mercy Chaplet.
Crossroads is a haven for children with special needs, and their parents. At present, Christina, Gabriela and I are receiving Physical Therapy there and we are very pleased to have found this haven for those who need God's loving touch.
Friday, December 14, 2012
St. Lucy's Day in the morning
These days with all the girls in school, we have to celebrate St Lucy's Day on the weekend. So here's a look at five years ago when we homeschooled and life was slower paced.
Isabella woke up on time, and served the apple raspberry coffee cake she made yesterday with gourmet coffee to her parents in bed.
We sang:
"Wake up! Lucia comes today,
So be glad!
Lucia comes in bright array,
To open our hearts for Christmas Day.
Isabella woke up on time, and served the apple raspberry coffee cake she made yesterday with gourmet coffee to her parents in bed.
We sang:
"Wake up! Lucia comes today,
So be glad!
Lucia comes in bright array,
To open our hearts for Christmas Day.
Monday, December 10, 2012
Do your child's music lessons make you a Tiger Mom?
This woman blames her ruined marriage on an overbearing mom who forced her to practice eight hours daily on the violin.She got married to get away from her stage mom.
At 17, I received a proposal. I accepted. I fooled myself into thinking I was in love. In retrospect, it gave me a way out from my domineering mother.
After graduation, my fiancé enrolled at the Merchant Marine Academy at Flushing, Long Island for Officers School. This kept him out of the draft. We often talked on the phone. And we decided we couldn't wait another year for his graduation to get married. So, with little prodding, Mother agreed to a September wedding in New York.
I left the violin behind me and never looked back. Almost from the beginning, our marriage was doomed. I was way too young and used this fine young man for my freedom. We failed to conceive a child and divorced in five years. He married again and had a long marriage.
Read more here: http://www.fresnobee.com/2012/12/07/3093631/lue-christian-parents-listen-to.html#storylink=cpy
I enjoyed playing the violin as concertmaster of the elementary school orchestra in sixth grade. Then my music teacher recommended a tutor, and the nice one, Miss Clarke, the one who cracked jokes, was busy, so my parents picked a Korean lady who never made her debut in Carnegie Hall, and was determined that I was going to do that for her.She lectured me about walking to school through the rice paddies (no newspapers for shoes but yes it was uphill both ways) to school and how lazy Americans were. I hated the lessons. She terrified me.
My entire life revolved around my miserable lesson on Tuesdays at 4:15 (nearly half a century ago, but I still remember the time!), the dreaded lesson when she would hit the music stand with the baton in front of my nose and scold me, "Leticia you must practice, practice!"I could never practice enough to please her, so I quit amid protests from my parents, and delayed playing for the junior high orchestra where she conducted out of fear. I never made it back into the mainstream of the orchestra in high school and only play sporadically today. I wasn't as gifted as the young lady in the story, but I know how it feels to have pressure and hate it. Did it keep me from Carnegie Hall? I doubt it. But I might have enjoyed high school orchestra more if I felt equal to the other players, we had the same conductor who believed in me in elementary school. I am not permanently scarred but I vowed not to push my girls as hard as I was pushed. I was also a straight A student and first class nerd.
Lesson here, after a year of getting the hang of practicing and making enough progress on the instrument to have one recital, if the child hates the tutor or the instrument, its time to let them make the decision, because its possible that you are making them play for yourself, and your ego. Its about them, right?
I gave piano lessons to Bella and guitar to Gabbi. I encouraged a reasonable practice time. Bella loves to play piano, writes her own compositions, and each time we move she seeks a new tutor, while Gabbi has decided not to play at this time and is in college. I try and encourage Bella's gift for music, without injecting my personal sense of pride. We had relatives over on Saturday, and she happily played for them.
I think we have found the middle ground.
Friday, December 7, 2012
"A Special Mother is Born" is approved by the Catholic Writer's Guild
Dear Ms. Velasquez,
Thank you for submitting your book, A Special Mother Is Born, for the Catholic Writers Guild Seal of Approval.
After completing the review process, we are excited to award you the Seal of Approval for your work.
Congratulations! If you have any questions, do not hesitate to contact either of us.
Blessings,
Sarah Reinhard Ann Lewis
SOA Committee Chair President
Monday, November 26, 2012
Children's Diets and Daycare
This article from Family Edge describes the problem of childhood obesity with relation to day care.
Read the entire article here.
The French-Canadian province of Quebec has a big stake in this information because 15 years ago it rolled out a province-wide, $7 a day childcare scheme which was aimed at helping the poorest children, as well as make it possible for women to stay in the workforce and have babies and thus lift a dangerously low fertility rate. You can read here what one commentator had to say about the fiscal results early this year.
Reports on how the kids are doing are mixed. The latest, from researchers at the University of Montreal, is negative. It reveals that children aged between 4 years and 10 are 50 percent more likely to be overweight if they attended a daycare centre between the ages of 18 months and four years, compared with those care for at home by their parents. Even leaving a child with a relative significantly increased the risk of obesity, the Daily Mail reports.
I was a licensed day care provider from my home for three years. Here's how the kids become overweight. Mom feels guilty for putting child in care, comes to pick up with unhealthy fast food in hand. Plus she's too exhausted to cook dinner from scratch anyway. So there's fast food for dinner too.
I was providing daycare at my home to be able to homeschool my kindergartener and care for my preschool child. I cooked dinner from scratch, and did not go out for junk food. It just wasn't in our limited budget. We served a carefully planned, government approved lunch and snack menu, with measured portions, and no seconds, so I know that the kids were not getting fat in my care. Oreos and candy were not reimbursed, but oatmeal cookies and fruit were. NO junk food was brought into my home. Or video games. We only watched one hour of TV a day, the rest of the day was spent in play with educational toys.
In addition, the children always went outdoors for at least a half hour exercise before lunch. I did my part to keep those kids in my care healthy, as my girls were among them. I am also a certified teacher and I taught preschool curricula to the kids, letters, numbers, colors, shapes were taught in circle time. Arts and crafts and music time were part of our schedule. My girls enjoyed kindergarten from home with built in friends.
It takes a full time parent to serve home made meals from scratch with no additives. And I think the money saved by not buying junk food could save a lot of moms the trouble of going out to work. One of my moms, who worked in a bank, admitted she made no money after taxes, she was only working because she didn't want to be with her two young sons. She had no control over them, and all three were unhappy. I felt very sorry for the entire family. It was as common a scenario as the struggling single mom.
Another mom, who was not making much money had a lovely four year old daughter with a severe weight problem; she couldn't fit in the swings on my swing set. Mom showed up every day with a bag of chips at four o'clock, despite my protests that we had just snacked at 3PM. It broke my heart.
I have worked most of my twenty years as a mom, but 90% of the time I worked part time, or from home, making great financial sacrifices to stay home with my three girls. Many of the moms whose children I cared for, could have chosen that option, at least while the children were young, but the culture encourages women to pause to mother only briefly after childbirth, while on maternity leave.
As Alice Von Hildebrand says, today's women, like Jacob of the Bible have traded their rich inheritance for a mess of pottage. They have cheated themselves of the riches of family life. Both of my grandmothers worked full time with young children out of need; they were immigrant families and the nation was suffering a Depression. Sometimes a woman has no choice. My mother enjoyed being at home while we were, and entered the work force when my younger brother entered preschool, in fact that is where she worked. She has so little clothing, she only had two work outfits and alternated days, causing the inquisitive preschoolers to ask why she only had one outfit, since they alternated days as well! I am so grateful for her sacrifice.
I had a happy childhood, and had no weight problems. Despite having a Masters's in Education, I chose to forgo the good income of a full time teacher to stay home with my three daughters.
Now that my girls are beginning to leave the nest, I am so happy that I chose them over the nice vacations, fashionable clothing (we shopped at our parish thrift store) and new cars (if a car has under 100,000 miles, to us its 'new'). The emotional, spiritual and physical benefits my girls enjoy are immeasurable.
Monday, November 19, 2012
The Sensory Diet and Christina
I attended a session at the Connecticut Down Syndrome Congress Annual Conference which really opened my eyes. It was on Sensory Integration Disorder. Here is the blurb.
It all comes down to the parent doing the research, attending the workshops and making sure their child's teachers and therapists are on board. It can be an overwhelming responsibility.
Here's a demo video on brushing.
I did try this on Christina, she absolutely LOVED it, in fact, she brushed Mommy this morning!! I have a PPT meeting on Wednesday about the results of the Sensory Integration Survey and I will need your prayers to be assertive in making sure that Christina has a sensory diet included in her IEP. There is no way that she should be so resistant to going to school as she is, refusing to get out of bed. It took me till 12:45 to get her to school today, only to discover that it was an early dismissal day!
I firmly believe that if we help Christina integrate her sensory input that her non-compliant behavior will decrease and she will be more cooperative and focused, making learning possible. I will document the results here on the blog, so you can make up your own mind if this works.
I would appreciate your prayers as I sensed a lot of resistance on the part of the staff at the last PPT meeting.
Sensory Processing in the Child with Down Syndrome:
Presented by Marie Mancini-Oliveira MS, OTR/L, Melissa
Broxton MS, OTR/L.
This workshop will provide an overviewI learned how the low muscle tone, hearing and visual impairment of those with Down syndrome can affect their sense of where their body is in space ( this is called proprioception ) and their sense of balance (vestibular). Therapeutic interventions like swinging, using a therapy ball, and brushing using a brush like this Wilbarger Therapy Brush. were discussed and it was amazing to hear how a lack of sensory integration can lead to behavioral problems as our children are trying to tell us that we are not meeting their needs. Almost all the parents in the session had the same issues with their children with Down syndrome; they hated bathing, hair brushing, nail trimming, and haircuts. They did all kinds of extreme things to avoid these behaviors and were shortcircuting relationships, and education by their coping behaviors. It was a revelation and made me wonder why all the professionals who have worked with Christina had not suggested sensory issues before.
of Sensory Processing Disorder and how it presents itself
functionally in children with Down syndrome. We will
elaborate on ways to detect whether it’s sensory or behavior,
as well as ways to know if your child could benefit from a
sensory integration based evaluation.
It all comes down to the parent doing the research, attending the workshops and making sure their child's teachers and therapists are on board. It can be an overwhelming responsibility.
Here's a demo video on brushing.
I did try this on Christina, she absolutely LOVED it, in fact, she brushed Mommy this morning!! I have a PPT meeting on Wednesday about the results of the Sensory Integration Survey and I will need your prayers to be assertive in making sure that Christina has a sensory diet included in her IEP. There is no way that she should be so resistant to going to school as she is, refusing to get out of bed. It took me till 12:45 to get her to school today, only to discover that it was an early dismissal day!
I firmly believe that if we help Christina integrate her sensory input that her non-compliant behavior will decrease and she will be more cooperative and focused, making learning possible. I will document the results here on the blog, so you can make up your own mind if this works.
I would appreciate your prayers as I sensed a lot of resistance on the part of the staff at the last PPT meeting.
Wednesday, November 14, 2012
The Fear Which Haunts Me
There have been great changes in my household in the past year. Four older teenagers have moved out of my home to begin their independent lives; my brother and sister-in-law, a friend's daughter who was boarding with us, and my oldest daughter Gabbi is attending Franciscan University of Steubenville.
That leaves me alone with Christina, now ten years old, at least five hours a day. Most of the time we enjoy one another's company and happily work together, eat together, and just enjoy a walk, a movie or board game together. But 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.
We have a shallow river nearby, and a pool in our yard. We have little traffic on our road, but they drive too fast, and it only takes one car, and we have woods, endless woods where she can get lost or find a predator.
Animal or human. We have bears, bobcats and coyotes.
I have put up a tall fence around my home, thanks to funding from the State, and am looking into alarms for the doors, as Christina has learned how to open them. We need more secure locks, and I would love more pairs of eyes to help me keep track of her. I never want to live with the regret that Christina found herself in harm's way and I could have prevented it.
I pray to her Guardian Angel and seek peace that I am as vigilant as humanly possible. The rest is in God's hands.
That leaves me alone with Christina, now ten years old, at least five hours a day. Most of the time we enjoy one another's company and happily work together, eat together, and just enjoy a walk, a movie or board game together. But 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.
Jenny was a special needs student with Down syndrome. Sheslipped out of her physical education class that day, and sadly after an exhaustive search, her body was found in a nearby retention pond several hours later.This happened despite five aides who were present and a gym full of children, many of whom saw Jenny leave and assumed it was OK. It wasn't OK. Children with Down syndrome are always children, and have to be watched with extra vigilance.
We have a shallow river nearby, and a pool in our yard. We have little traffic on our road, but they drive too fast, and it only takes one car, and we have woods, endless woods where she can get lost or find a predator.
Animal or human. We have bears, bobcats and coyotes.
I have put up a tall fence around my home, thanks to funding from the State, and am looking into alarms for the doors, as Christina has learned how to open them. We need more secure locks, and I would love more pairs of eyes to help me keep track of her. I never want to live with the regret that Christina found herself in harm's way and I could have prevented it.
I pray to her Guardian Angel and seek peace that I am as vigilant as humanly possible. The rest is in God's hands.
Saturday, November 10, 2012
Business Week says Sequenom is Making a Killing with New Prenatal Test
from Business Week;Here is my response.
Shares of Sequenom Inc. surged Friday after the company said demand for its maternal Down syndrome test is improving and it expects to surpass its previous guidance for testing volume.
Sequenom said at the end of October it was handling about 1,700 MaterniT21 Plus samples a week, which projects to a rate of about 90,000 tests per year. The company said it ran about 18,000 of the tests during the third quarter and will "significantly exceed" its estimate of 50,000 billed tests in 2012.Read the entire article here.
Not that pre-natal testing is wrong in itself, but with the extraordinarily high (75-92%) abortion rate when these tests yield a positive result for Down syndrome, does't Sequenom plan on investing any of these profits into education about the research advances made this year testing the first medicines to treat the cognitive delays present with Down syndrome?
To inform the parents of the amazing things people with Down syndrome are able to do today, complete high school, act, compete in sports, hold down a job, get married, paint, play instruments or simply spread their unique joy in life?There has never been a better time to be born with Down syndrome.
Or do the owners of this company see it as their goal to rid the world of those with extra chromosomes?
See the poster below from Nazi Germany stating that the developmentally delayed are "useless eaters" who cost the people much needed funds without offering anything to society.
See the poster below from Nazi Germany stating that the developmentally delayed are "useless eaters" who cost the people much needed funds without offering anything to society.
Dr Jerome Lejeune who first discovered the cause of trisomy 21 and made Materni T21 possible won the Kennedy Prize for this discovery 50 years ago, and dedicated his entire life to finding treatments to improve the lives of those with extra chromosomes, I hope that Sequenom takes the same type of socially responsible attitude instead of just making their investors rich.
Saturday, November 3, 2012
A Special Mother is Born Celebrates First Anniversary
CCC 166 Faith is a personal act — the free response of the human person to the initiative of God who reveals himself. But faith is not an isolated act. No one can believe alone, just as no one can live alone. You have not given yourself faith as you have not given yourself life. The believer has received faith from others and should hand it on to others. Our love for Jesus and for our neighbor impels us to speak to others about our faith. Each believer is thus a link in the great chain of believers. I cannot believe without being carried by the faith of others, and by my faith I help support others in the faith.
In 2002, I , the mother of two girls, became the mother of a baby girl with Down syndrome. It was something I never imagined I could handle, I rationalized that I didn’t have enough patience, that my marriage could not withstand the stress, nevertheless, one Sunday morning, while attending Mass halfway through my pregnancy, I heard a voice in my heart, which said, “You are going to have a baby with Down syndrome.” I doubted this voice, and tried to shrug it off, but a few minutes later, I was in the Communion line and the voice said, “I want you to accept this child as a gift from My Hand.” I accepted God’s will and His Body in tears saying, “yes, Lord, but please bring my husband along for the ride”. God used even my reluctant fiat to accomplish His will in my life.
Four months later, Christina was born and the voice was proved to be prophetic; Christina did have Down syndrome and was tiny at 5 lbs,but was otherwise healthy. I was surrounded by an embrace of love. Phone calls came, meals arrived, and over one hundred people attended her Baptism, in the pouring rain on Mother’s Day. Their faith kept me afloat when I was weak, recovering from a C-section, dealing with her jaundice and nursing issues, as well as supporting family members who were still coming to grips with the fact that she had Down syndrome.
My pastor connected me with the mother of a lovely 20 year old young lady with Down syndrome who calmed my fears by telling me that Kristin was happy, working a job a local bakery, busy with family activities, and a godmother three times over. Another friend sent an Elizabeth Ministry package with a book and CD “Sometimes Miracles Hide” which was full of testimonies of parents of special needs children. My faltering faith was buoyed by a loving tide of support from my faith community.
Once I regained my stride as a mother, I began to notice that other mothers of babies with Down syndrome are not given such support.. I took Christina to her older sister’s softball game and brought tears to the eyes of a mother who had felt unequal to the challenge of bearing a child with Down syndrome, and made the tragic choice of abortion. My baby made this mother realize she had made a mistake; between 75-92% of moms who received a diagnosis of Down syndrome choose abortion. I resolved to share my story with moms like this who feel overwhelmed, as I did, but who do not have the beautiful community of support I enjoyed. I learned that my doctors were not going to pass my phone number to their patients, so I took to the Internet. There I found a place to share how my little child with Down syndrome was a blessing to my family and the larger community. I shared how she was an example of faith by her simple prayers to God in times of need, her unconditional love of all those she met, and her boundless joy at Mass. Soon other parents shared their inspiring stories with me, and I collected them into a book A Special Mother is Born a collection of 34 stories from Catholic parents of special needs children who share what a blessing they are.
So many women have told me that these moving stories strengthened their faith, making them additional links in the chain of believers, and I am grateful to God for the grace to say “yes” to His gift of Christina a little girl with Down syndrome.
Wednesday, October 31, 2012
NIH establishes patient registry for people with Down syndrome
A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders.People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.
If a participant gives permission to be contacted, clinicians and researchers who are authorized to access the database will be able to contact these individuals to see if they are interested in participating in a research study.
Ultimately, the registry will be able to link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatments for Down syndrome.
The contract, which will support the creation of the registry through September 2013, received $300,000 in funding for its first year.
"The new registry provides an important resource to individuals with Down syndrome and their families," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which is funding the registry. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research."
Down syndrome most frequently results from an extra copy of chromosome 21 in the body’s cells. Infants with Down syndrome are likely to have certain physical characteristics, such as short stature and distinctive facial features, as well as health conditions like hearing loss, heart malformations, digestive problems, and vision disorders. Although Down syndrome most commonly results in mild to moderate intellectual disability, the condition occasionally involves severe intellectual disability. In addition, some individuals with Down syndrome age prematurely and may experience dementia, memory loss, or impaired judgment similar to that experienced by individuals with Alzheimer disease.
"Down syndrome is complex," Dr. Maddox said. "A wide array of scientific expertise is required to address all its aspects in a comprehensive manner."
Development of a patient registry was a leading recommendation in the 2007 NIH Down Syndrome Research Plan, which sets goals and objectives for the Down syndrome research field. Together with the Global Down Syndrome Foundation, the NICHD sponsored the Down syndrome National Conference on Patient Registries, Research Databases, and Biobanks to solicit the advice of a number of experts from the advocacy community, federal agencies, industry, and the clinical and research communities on how best to establish a Down syndrome registry.
The plan for the registry was supported by the public-private Down Syndrome Consortium, which was established by the NIH in 2011 to foster the exchange of information on Down syndrome research, and to implement and update the Research Plan. Membership on the Consortium includes individuals with Down syndrome and family members, representatives from prominent Down syndrome and pediatric organizations, and members of the NIH Down Syndrome Working group, an internal NIH group that coordinates NIH-supported Down syndrome research.
"We're grateful to those who provided us with the advice that allowed us to establish a national registry," Dr. Maddox said. "We are happy that this important step in furthering research on Down syndrome has been accomplished and hope that many families will take advantage of the opportunity to sign up as soon as the registry goes online."
About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; intellectual and developmental disabilities; and medical rehabilitation. For more information, visit the Institute’s website at http://www.nichd.nih.gov/.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visitwww.nih.gov.
Source: nih.gov
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Wednesday, October 3, 2012
Your prayers worked a miracle for Christina!
If you don't follow me on Facebook, you should, that's where I do most of my writing lately, because I have been suffering for five years with fear. Fear that Christina who once spoke beautifully and now can hardly speak was going downhill and I couldn't find out why, Specialist after specialist, clinic after clinic, to no avail. I don't want to scare any new moms so I only made vague references to it here. But it ate at my heart, making it difficult to be positive about our lives together. I felt as if I were failing her, even though I never stopped trying new therapies, doctors, techniques. I kept praying for the intercession of Dr Lejeune to find the reason she was not her old self. I believe he has brought me an answer to that prayer, and that of nearly a hundred friends from all over the world who encouraged me on Facebook. I had asked for their prayers for her PPT meeting (Pupil Planning Team this is a meeting of all her teachers to decide what her Individual Education Plan will be).
Today in her PPT meeting the Special Ed Administrator was helping me plan for a future in which she will use an Ipad to speak. That she will have very limited functioning as an adult, that our hopes for her to speak as she once did were at an end. As you can imagine I left that meeting numb and dispirited.
BUT THAT IS NOT THE END OF THE STORY!
Now I have a resurgence of hope. Later today, Christina was evaluated at Crossroads Physical Therapy in Columbia, CT. and the therapist offered not only a diagnosis, but a possible cure. I was in tears when he told me her left eye is higher than her right (never noticed it, being too close for objectivity I suppose) and that this is causing her stress. All the problems are from this. AND there is hope it can be healed.
I can't go into details because I would state it incorrectly, however, ALL the behavioral symptoms which have troubled me, her increasing lack of cooperation and isolation, repetitive gestures, negative reaction to crowded rooms (she prefers to watch her favorite films alone with her doll when we have lots of noisy guests). These symptoms are a result of the extra stress on her system from the eye. The speech center of the brain is located just behind that eye, and when Christina was five, she nearly died from double pneumonia, causing a chain reaction of stress, robbing her of her ability to speak, to interact with others, and isolating her in her own little world. It is very hard to draw her out. I knew that she was being hampered, I didn't know what was causing it, now its all clear, and I am dancing with joy and praising God with all my heart. But the therapist explained in great detail why this is a problem which had a solution and he was most optimistic that together we can help my beautiful daughter speak again.
Now I understand it was because her overwrought senses are bombarding her and she is seeking peace. She is not able to speak and is withdrawing, but no longer. She was very happy to cooperate with the therapist today, and I think she feels better when he works with her. Stay tuned because I want to document this miracle of a diagnosis. I want to document her progress, or people will say it never happened, that this is wishful thinking, that I am delusional.
This is a miracle thanks to the intercession of Servant of God Dr Jerome Lejeune for whose intercession I have been begging, and a result of the prayers of nearly 100 of my dear Facebook friends!
Thank you from the bottom of this mother's grateful heart!!
Exaude Domine!
Today in her PPT meeting the Special Ed Administrator was helping me plan for a future in which she will use an Ipad to speak. That she will have very limited functioning as an adult, that our hopes for her to speak as she once did were at an end. As you can imagine I left that meeting numb and dispirited.
BUT THAT IS NOT THE END OF THE STORY!
Now I have a resurgence of hope. Later today, Christina was evaluated at Crossroads Physical Therapy in Columbia, CT. and the therapist offered not only a diagnosis, but a possible cure. I was in tears when he told me her left eye is higher than her right (never noticed it, being too close for objectivity I suppose) and that this is causing her stress. All the problems are from this. AND there is hope it can be healed.
I can't go into details because I would state it incorrectly, however, ALL the behavioral symptoms which have troubled me, her increasing lack of cooperation and isolation, repetitive gestures, negative reaction to crowded rooms (she prefers to watch her favorite films alone with her doll when we have lots of noisy guests). These symptoms are a result of the extra stress on her system from the eye. The speech center of the brain is located just behind that eye, and when Christina was five, she nearly died from double pneumonia, causing a chain reaction of stress, robbing her of her ability to speak, to interact with others, and isolating her in her own little world. It is very hard to draw her out. I knew that she was being hampered, I didn't know what was causing it, now its all clear, and I am dancing with joy and praising God with all my heart. But the therapist explained in great detail why this is a problem which had a solution and he was most optimistic that together we can help my beautiful daughter speak again.
Servant of God, Dr Jerome Lejeune |
This is a miracle thanks to the intercession of Servant of God Dr Jerome Lejeune for whose intercession I have been begging, and a result of the prayers of nearly 100 of my dear Facebook friends!
Thank you from the bottom of this mother's grateful heart!!
Exaude Domine!
Wednesday, September 19, 2012
One story like this makes it all worthwhile
I have been complaining lately about a problem shared by many Catholic writers. We have plenty of wonderful opportunities to evangelize via the Internet, blogs, websites, Facebook, Twitter, and the occasional paid article. Just look at all the great websites, books, encyclopedias, and magazines in which I have been honored to publish my work mentioned in the sidebar of this blog. Most of the time there is no pay. None.
I am largely a volunteer writer with two daughters in Catholic schools paying steep tuition. My husband is very a patient and generous man. There is very little money in this business. We do it for love of souls and to participate in the New Springtime of Evangelization. I joke about adding bricks to my mansion in Heaven.
But sometimes, and this week was one of them, I feel sorry for myself for being broke. I used to make $65.00 an hour teaching English in a Community College on Long Island, and I do, after all, have a job.
But then, Mary Kochan, bless her, my editor at Catholic Lane suddenly makes it all worthwhile. Not that interviewing Eduardo Verastegui here about his role in "For Greater Glory" wasn't a fantastic perk on its own, but this comment at the end of the interview reminded me that by promoting films like "For Greater Glory" I am participating in the saving of souls. I am humbled by Jim's piety and embarrassed that I wanted more than this.
Jim •
First of
all I have to say that this movie did not entertain me, however it did brutally
educate me on an event I knew nothing about.
I have
been a terrible Catholic all my life and a coward as well and have totally lost
my faith in the Catholic Church. With the sex scandals that went on and me a
victim of it I had learned to hate the Catholic Church. I am now dying of
cancer and was feeling so alone though my family is always nearby. I still felt
I was missing something; something I had to do before I left this earth but I
could not put my fingers on it. I was feeling empty, it was like well, I have
to die but why am I afraid? We all have to face it.
I felt
compelled to watch this movie and don’t know why, I have never felt like this
in watching any other movie trailer, but when I did see it I had to check the
net and find out what I could on this event. After searching and reading some
articles I was hooked but only because I wanted to see what these people would
do with their faith, what I did not anticipate was the spiritual journey that
this movie takes you on.
I was
overwhelmed with the courage and faith of these Christeros and was downright
heartbroken over the torture of this little boy. Never have I witnessed such
bravery in people and made me proud to be a Catholic once more which is
something I never thought I would say again. The courage and faith of this
little boy has made it possible for me to die without fear and I can say I no
longer fear it. Who am I to complain about the manner of my death after
watching this brave boy and others give up their lives? What an inspirational
film and I now know that it was no accident for me to see it. In the end it Was
God that I was missing, I always felt him but I never reached out to him.
To honor
this boy and all the Christeros I have decided to stop taking my medication
since it is only for pain anyways. I need to make amends for my previous lack
of faith and it is nothing compared what was done to the Christeros. My journey is close to an end and I no longer
have any fear and can’t wait for the day that I can meet this boy and all the
Christeros. Thank you for this film! To the boy and the Christeros I say thank
you for given me back my faith and until we meet. Viva Christo Rey!
I am largely a volunteer writer with two daughters in Catholic schools paying steep tuition. My husband is very a patient and generous man. There is very little money in this business. We do it for love of souls and to participate in the New Springtime of Evangelization. I joke about adding bricks to my mansion in Heaven.
But sometimes, and this week was one of them, I feel sorry for myself for being broke. I used to make $65.00 an hour teaching English in a Community College on Long Island, and I do, after all, have a job.
But then, Mary Kochan, bless her, my editor at Catholic Lane suddenly makes it all worthwhile. Not that interviewing Eduardo Verastegui here about his role in "For Greater Glory" wasn't a fantastic perk on its own, but this comment at the end of the interview reminded me that by promoting films like "For Greater Glory" I am participating in the saving of souls. I am humbled by Jim's piety and embarrassed that I wanted more than this.
Jim •
First of
all I have to say that this movie did not entertain me, however it did brutally
educate me on an event I knew nothing about.
I have
been a terrible Catholic all my life and a coward as well and have totally lost
my faith in the Catholic Church. With the sex scandals that went on and me a
victim of it I had learned to hate the Catholic Church. I am now dying of
cancer and was feeling so alone though my family is always nearby. I still felt
I was missing something; something I had to do before I left this earth but I
could not put my fingers on it. I was feeling empty, it was like well, I have
to die but why am I afraid? We all have to face it.
I felt
compelled to watch this movie and don’t know why, I have never felt like this
in watching any other movie trailer, but when I did see it I had to check the
net and find out what I could on this event. After searching and reading some
articles I was hooked but only because I wanted to see what these people would
do with their faith, what I did not anticipate was the spiritual journey that
this movie takes you on.
I was
overwhelmed with the courage and faith of these Christeros and was downright
heartbroken over the torture of this little boy. Never have I witnessed such
bravery in people and made me proud to be a Catholic once more which is
something I never thought I would say again. The courage and faith of this
little boy has made it possible for me to die without fear and I can say I no
longer fear it. Who am I to complain about the manner of my death after
watching this brave boy and others give up their lives? What an inspirational
film and I now know that it was no accident for me to see it. In the end it Was
God that I was missing, I always felt him but I never reached out to him.
To honor
this boy and all the Christeros I have decided to stop taking my medication
since it is only for pain anyways. I need to make amends for my previous lack
of faith and it is nothing compared what was done to the Christeros. My journey is close to an end and I no longer
have any fear and can’t wait for the day that I can meet this boy and all the
Christeros. Thank you for this film! To the boy and the Christeros I say thank
you for given me back my faith and until we meet. Viva Christo Rey!
Saturday, September 15, 2012
Asking for the intercession of Servant of God Dr Jerome Lejeune
Servant of God, Dr Jerome Lejeune |
We have a prayer intention now, from a woman named Patty Steele, who read Barb Curtis' wonderful article on Dr Lejeune in American Life League's "Celebrate Life" magazine and here is the email where she requests prayers for a friend of hers who is in great need.
Dear Barbara:
I found your article on Professor Lejeune and was wondering if you knew how I could contact someone in charge of his cause for canonization? A friend of mine had a tragic accident (see story below) and we are praying for his healing through Dr. Lejeune. We wanted to notify those in charge of his cause and ask for their prayers also. Any information you could provide would be greatly appreciated!! Your prayers would also be appreciated!! Thanks and God bless!!
Patty Steele
I ask that you pray this daily prayer of healing for Pete Beerse and if you can spread it to other prayer chains that would be awesome! See his story below.
God, you created man in your image and intended him to share your glory. We thank you for having granted to your Church the gift of Professor Jerome Lejeune (discovered cause of down syndrome), a distinguished servant of life. He knew how to place his immense intelligence and deep faith at the service of the defense of human life, especially unborn life, always seeking to treat and to cure. A passionate witness to truth and charity, he knew how to reconcile faith and reason in the sight of today's world. By his intercession, and according to your will, we ask you to completely heal Pete, hoping that soon he will become one of your saints.
Pete and Lisa have been married for 25 years! They have 8 children, 1 son-in-law and 1 grandson. On Sunday, September 9, 2012, Pete and Lisa were on their front porch swing when it collapsed. Lisa was uninjured, but Pete hit his head and broke his neck. He was air flighted to University Hospital in downtown Cincinnati where he is currently being treated. His neck was broken between C6 and C7. The break then damaged his spinal cord. He can move his arms, but cannot move his hands and fingers. He has no movement from the upper chest down.
What the family needs most right now is prayer! Please join us in praying for Pete's total healing through Professor Jerome Lejeune. Pete was very interested in promoting Professor Jerome Lejeune's cause for canonization because in July 1958, as Prof. Lejeune was studying chromosomes linked to Down syndrome, he discovered the existence of an additional chromosome on the 21st pair. With this remarkable and ground-breaking discovery, he renamed the condition trisomy 21 to accurately describe the genetic abnormality. For the first time Dr. Lejeune had established a link between an intellectual disability and its genetic cause. Pete's 7th child Michael has Trisomy 21.
As they were leaving the house after the accident Pete told Lisa to get the prayer off the piano that he had recently printed and ask people to begin praying for him! So in obedience and with great hope and love we obey Papa Beerse and pray with all our heart for his healing through the powerful intercession of this holy man Professor Jerome Lejeune! For further updates you can go to caringbridge.org/visit/petebeerse
Thank you so much!!
Monday, September 10, 2012
Down Syndrome Daily: NEISD to pilot Down syndrome reading program
Down Syndrome Daily: NEISD to pilot Down syndrome reading program:This program, designed by Sue Buckley of Downs Ed International in Great Britain is the first of its kind designed specifically for children with Down syndrome.
The same reading program will be discussed at a two day conference in Burlington, Massachusetts this November 30 through Dec 1. See more details here.
The same reading program will be discussed at a two day conference in Burlington, Massachusetts this November 30 through Dec 1. See more details here.
The "call within a call' to special motherhood
Today is Blessed Mother Teresa's "Inspiration Day". The day she was taking the train to a retreat in Darjeeling and Jesus spoke to her about her 'call within a call' to leave her safe convent with the Sisters of Loreto, where she taught wealthy girls and to begin a radical new life, serving the poorest of the poor on the streets of Calcutta. It was truly courageous of her to do this, she had no precedent besides the examples of the great saints, no agency, no funds, no place to bring the homeless dying people whom the hospitals rejected when she carried them in from the street. Yet she placed her trust in the loving words of Christ, stepped out in faith, and persevered in her apostolate, even when He seemed distant, and her work bore fruit that even the world acknowledges as extraordinary.
I like to compare the vocation of parents of special needs children to Mother Teresa's 'call within a call'. We Catholic parents are often aware that our vocation to parenthood is a holy call, but sometimes Our Lord speaks to the hearts of certain parents, asking us to trust Him even more deeply as He blesses them with a special needs child.
Sometimes it comes as a pre-natal diagnosis of special needs like Down syndrome as this mother had. Other times we are called to adopt a child with special needs as the Watkins family did. Sadly the first mother, initially accepted the call to give birth to her son Joseph with Down syndrome and autism, but allowed his father to cast doubt on that call, and she ultimately rejected her son, aborting him at 18 weeks, for fear of losing her lover. So much sadness and grief replaced what could have been amazing joy. They said "no" to what Mother Agnes Mary Donovan, SV, Superior of the Sisters of Life, in the Foreword to my book on this topic, "A Special Mother is Born", calls, the "surprising encounter with Christ" and have nothing but grief, and a dead son where faith and a relationship not only with a special boy, but a living Christ could have transformed their lives. I doubt their relationship will survive this loss unless they turn to Christ for forgiveness. May He have mercy on them.
The Watkins family, on the other hand, said "yes" to the call to parent not one, but two children with Down syndrome. They found Anna, 9 and Vlad, 10 in a Ukrainian orphanage and brought them across the Atlantic Ocean to a happy home already blessed with four siblings to love them.
Thank you from the bottom of my hear to Jesus whose gifts are infinitely better than our greatest dreams!
Happy Inspiration Day!
I like to compare the vocation of parents of special needs children to Mother Teresa's 'call within a call'. We Catholic parents are often aware that our vocation to parenthood is a holy call, but sometimes Our Lord speaks to the hearts of certain parents, asking us to trust Him even more deeply as He blesses them with a special needs child.
Sometimes it comes as a pre-natal diagnosis of special needs like Down syndrome as this mother had. Other times we are called to adopt a child with special needs as the Watkins family did. Sadly the first mother, initially accepted the call to give birth to her son Joseph with Down syndrome and autism, but allowed his father to cast doubt on that call, and she ultimately rejected her son, aborting him at 18 weeks, for fear of losing her lover. So much sadness and grief replaced what could have been amazing joy. They said "no" to what Mother Agnes Mary Donovan, SV, Superior of the Sisters of Life, in the Foreword to my book on this topic, "A Special Mother is Born", calls, the "surprising encounter with Christ" and have nothing but grief, and a dead son where faith and a relationship not only with a special boy, but a living Christ could have transformed their lives. I doubt their relationship will survive this loss unless they turn to Christ for forgiveness. May He have mercy on them.
The Watkins family, on the other hand, said "yes" to the call to parent not one, but two children with Down syndrome. They found Anna, 9 and Vlad, 10 in a Ukrainian orphanage and brought them across the Atlantic Ocean to a happy home already blessed with four siblings to love them.
“We just knew immediately that’s what we were called to do,” Andrea said of adopting children with a developmental disability. “We kind of always felt like this was something we wanted.”Children multiply joy and expand hearts; they don't divide parents if they are willing to trust in Christ's call to share their hearts, their homes and their futures.None of us knows what the future holds, but we know of Christ's great love for us. The important thing is to love Christ enough to know, as He told me in my heart when He revealed the baby I was carrying a decade ago, had Down syndrome, that "this child is a gift from My Hand."
That desire, or calling as the Watkins describe it, was born of the family’s Christian faith and experiences with their own siblings. Kevin’s brother has Down syndrome and Andrea’s brother also has developmental disabilities.
Thank you from the bottom of my hear to Jesus whose gifts are infinitely better than our greatest dreams!
Happy Inspiration Day!
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