My memories of Pope Benedict

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

Why this special mother cheered tonight

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

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

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

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

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

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

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

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

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

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

Preparing for Lenten Sacrifices

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

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

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

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

We had a White Christmas, did you?

The Lumen Christi Award

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

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

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

3) Name your favorite part about being a Catholic.

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

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

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

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

Christmas Joy 2012

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.

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.

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. 

"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

Children's Diets and Daycare

This article from Family Edge describes the problem of childhood obesity with relation to day care.

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.

Read the entire article here. 
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.

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.

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 overview
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.

I 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.
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.

A Tribute to Dr Jerome Lejeune, Father of Modern Genetics