Christina's after school routine

A friend on my Down syndrome Yahoo group is concerned because she feels her son is very limited when he gets home from school, not wanting to participate in normal activities. Christina is similar in that she has a set routine when she gets home from school, and rarely deviates from it.

She doesn't want to read a story, play with her sisters, or go for a walk. She only wants to play alone with her Elmo doll, or watch her favorite movies on TV. Period. The only exception to this routine is if I can get her to stay in the yard after she gets off the bus. She enjoys nature and throws the ball for our dog. It helps her unwind. 

I don't let it bother me like it once did. She has a lot of 'have to's' at school, and home is her down time. I give her time to veg out doing a mindless activity after school, and usually, by dinner she is more herself. I save shower/bath time for just before bed, and then she'll usually let me read her a book (same one every time). I think she's just humoring me. She gets lots of stories in school. 

In that way, she is similar to my husband who wants to veg out after a day at work!

I think there is a comfort to routine after what can be a very taxing school day. 

Last night we had a friend come over for dinner with her big family. Christina had a marvelous time playing dress up in the basement, but had a big meltdown when they left at 8:00. It took over an hour to get her upstairs and ready for bed. She probably enjoyed the break from her routine, but it still ruffled her feathers.

I have to accept her needs after school and not deviate from them more than necessary.

Down syndrome teen scores 51 yard touchdown!

Check it out over at my friend's blog

You have our backs

Now that I am on networked blogs, I get more comments on Facebook than here, so my friends have been sending me much needed prayers there. I owe you an update on Christina's and my backs.
 My spine has been locked up and developing arthritis, because I neglected to find a new chiropractor here in CT when I moved two years ago. The pain which crippled me in bed for two weeks was cured by one adjustment where there wasn't even a crack! Now with some ongoing treatment we can prevent a crisis like I just suffered through.
 I felt great for the banquet, and I am back among the active, praise God!
Now Christina will be undergoing an MRI for which she must be sedated later this week. Then we will decide if spinal surgery is indicated.
Good thing I am in good shape for this. Please keep the prayers coming.

Ave Maria Home Banquet Montage

Make an on-line slide show at www.OneTrueMedia.com

Irish cartoon to feature character with Down syndrome

A children's cartoon in Ireland will feature "Punky" a six year old girl with Down syndrome. It promises to be a positive portrayal, treating her as just one of the family. This cartoon is perhaps a result of living in a nation where 90% of babies with Down syndrome are not aborted. Abortion is still illegal in Ireland, and a visiting US professor wrote an article about how casually children with Ds are accepted in Irish society.

Gerard O’Rourke from Monster animation says that the main character Punky is a playful six year old girl who lives with her family but she is slightly different to other children. O'Rourke told the Evening heard that judging from their research this is the first ever series where the main character has Down Syndrome.
"It was unique and scary to deal with the subject matter on a mainstream cartoon. Down Syndrome Ireland provided a great bedrock and they were completely behind the idea of us doing the show," he said.
He added: "We wanted it to be shown among mainstream cartoons. It's not like a special show being shown at a special time. It'll be shown in amongst Dora the Explorer and Peppa Pig."

Good for Mr O'Rourke! You can't accept a type of person you rarely see, so frequency of contact leads to acceptance. I have never faced rejection of Christina by children, merely curiousity.

Maybe American TV will carry the show and teach young people in the US what a child with Down syndrome is like, they would certainly have to search far and wide to find one here.

Read the entire story here.

Christina's spinal malformations

My dear friend and outstanding pro-life physician, Dr Judy Mascolo recommended a CAT scan for Christina before OKing horseback riding. Thank God for her cautious wisdom!! The malformations have been there since birth and explain why Christina holds her head to one side.
Monday I met with a neurosurgeon, Dr Jonathan Martin, at Conneticut Children's Medical Center in Hartford and saw what concerned Dr Mascolo; her spinal malformations. Very frightening indeed!

Her top vertebrae in the cervical spine are warped, have extra bone in places, the top vertebra is fused to her cranium, and the fifth bone is missing on the left side, yet the upper vertebra has moved down to fill the gap;  they resemble ice which began to melt and then re-froze in bad position. She may need surgery to make the opening in the center of her vertebrae larger for her spinal chord. This is very scary and we will need your prayers as we do an MRI and then meet with her doctors to make this crucial decison.

Meanwhile, I am meeting with officials in her school to explain why she needs constant one on one supervision and greatly reduced activities. I hate to deny her the  playscape and swings, but we must err on the side of caution, since a wrong move may mean paralysis.

Please pray for my back

How many times have I reminded myself that when you are doing something beautiful for God, you pay a price. The enemy tries to prevent me from publishing "A Special Mother is Born". Now, for the past week, I have been flat on my back with spasms. Painful ones. I am tired of offfering it up. I want relief prayers. Now.

UPDATE Sept 24: Thank you, my back is still bad, but I finally found a new chiropractor here in CT (I haven't bothered since our move over 2 years ago this month, a case of mom's priorities come last coming back to haunt me) and they seem to have pinpointed the problem as a locked spine in my mid back, which is leaning on the muscles and causing spasms.
 I will be going on Monday for some relief, please God.
Meanwhile, I'm resting and on medication, oh, except for the Ave Maria Banquet, Mass on Sunday, then its Cennacle Sunday at the Friary. I'll be on heavy pain meds, so I can't drive to any of these events, but I'm still going.
Thank God for my husband and teenagers in my house who can drive!

Bishop welcomes people of all abilities at ‘Catholics Can’ Mass (CNA)

Thank you Bishop John Wester for the idea of a Mass for those with disabilities and for these words,

In his homily, the prelate said Jesus speaks to us in our sufferings and our challenges. “Our focus is not on the challenge, our focus is on your success, on all that you’ve accomplished, about the kind of human beings you are because of the way you have grown through your suffering and through your challenges,”

I am so proud to belong to a Church who recognizes the special spiritual gifts of those whom the world scorns for their lack of intellect or physical prowess. We really have our priorities right in the Catholic Church! Chris Bell founder of Good Counsel Homes and father to six disabled children said today,
"when we get to heaven, we will see our special needs children way up there (pointing up) because of their great spiritual gifts". I have seen Christina's spiritual gifts, and I am in awe of her ability to communicate with God, despite her speech delays, shows you that God is not hampered by them.

To read the entire article go to:

Bishop welcomes people of all abilities at ‘Catholics Can’ Mass :: Catholic News Agency (CNA)

Is aborting babies with Down sydnrome genocide?

Over at the Devoted Intellectual, they are asking if you think the 90% abortion rate of children with Down

sydrome is, as George Will says, "eugenic gendocide".

Of course, you know where I stand. Here is Keep Infants with Down Sydnrome, the group I co-founded to fight this terrible truth.
 But the more we can engage in conversation on this topic, the more the idea that selecting babies for destruction based on their genetic makeup is genocide, is advanced. The closer American comes to a nation with justice for all, born and unborn.

I'll say it again, the abortion of babies with Down sydnrome is eugenic genocide.
Pure and simple.

Chime in!

Winner at The Christopher's student film festival

The Nativity of Our Lady

Meditation:


St. Peter Julian Eymard

Even in her cradle, Mary was the delight of the most Holy Trinity, the admiration of the Angels. 'Who is this privileged one,' they ask, 'who at the first dawn of life, is so rich in virtue and adorned with such glory?'

In like manner should we rejoice, since Mary brings us the Bread of Life. From the day of her birth, we salute her as the aurora of the Eucharist, for we know that the Savior of mankind will take from her the substance of that Body and Blood which He will give us in the Adorable Sacrament of His love.

St. Peter Julian Eymard, Our Lady of the Blessed Sacrament, (Eymard Library), 31.
 

Meditation from Mary Vitamin
 
Here is a meditation on the meaning of the word latria, or the devotion we owe Our Lady as opposed to worship, which is reserved for the Most Holy Trinity. Latria was the
virtue I was given to cultivate this year when I was given a holy card at the Friary at Epiphany.
 

End of summer party

We celebrated the end of summer by watching Kristin Bothur's family on NBC news and enjoying Shana Surek's expressive photos in the Hartford Courant article (see photos here). It was a busy summer, helping her move, and to travel from Philadelphia to Boston to publicize her book 11 On My Own, but it brought our families closer. We watched as our children toasted marshmallows over a bonfire, and played 'manhunt' in the dark, grateful for their friendship. The photo shown here is of Chrisitna's First Holy Communion at St Mary's with Kristin, holding Dominic at our side.
I am pleased that Shana and the NBC TV crew focused their cameras on the lovely statue of Our Lady in their work, it gave the viewers a true sense of just what keeps this mother of eleven centered on her mission. Fr Tito was eloquent in the piece, saying, "its always a good to invest in the mother-child relationship". If only the children's father understood this none of what the family endured this summer would have been necessary, yet in His wisdom, Our Lord has brought blessings from sinfulness, and grace from depravity.
Now we have to pray for the father of these children to repent and support his family.

Our children deserve research!

Bella's backyard shrine

For days, Bella and Gabbi were up to something. They were in the woods, working on a surprise for me, a top secret project. They left to get wood chips, and came back dragging no less than six huge bags of chips. I had my suspicisions, but the result far surpassed my guesses.

Accross the stream from the henhouse, down a winding wooded path, lined with woodchips, up a dry stream bed, and around a tree in the path, likes the Shrine of the Holy Family.
The Velasquez family now has a shrine where they can hear the forest music as they pray to the Holy Family.

Thank you Gabbi and Isabella!

University of Arizona develops cognitive tests for Down syndrome

Whenever I see the words "Down syndrome testing" in my daily Down syndrome Google alerts, my stomach tightens. Usualy, it means a new effort has been made improve the 'search and destroy' techniques for abortion. Not this time. Researchers at the Universtiy of Arizona have developed a very quick, efficient cognitve test for people with Down syndrome.
I have often lamented to my child's teacher the lack of growth charts, and test standards for children with Down syndrome. I can find out how Christina does in relation to her typical peers, but I want to know how she ranks among her peers with Trisomy 21.
Now research which includes brain scans of the principle areas of the brain which are affected by the third copy of the 21st chromosome are used to assess not only cognitive abilities, but a trajectory of development and sadly, the course of dementia which often affects adults with Down syndome.Down syndrome primarily affects three major parts of the brain: the prefrontal cortex, hippocampus and cerebellum. Neuroimaging, primarily MRI and PT scanning, was a key part of Edgin and Nadel's research. Images show that individuals performing certain tasks engage one or more of those three parts of the brain. Researchers also know that when certain parts of the brain have been damaged that particular tasks can or cannot be performed.

"The point is that these tasks in the test battery have been selected because they really hone in on the particular functions of the brain regions," Nadel said. "What's equally important is that not only do they hone in on a particular brain region, but they also don't particularly depend on other brain regions. They're selective."
Those with Down syndrome run a broad range of outcomes, from mild to severe cognitive impairment depending on development in the three brain regions that are at risk. The hope is that the test battery is a way to figure out, for any given child, where they fit developmentally within each of these particular domains. And because Down syndrome is caused by an extra chromosome with many genes involved, there is considerable variability in the outcome for a given child.

"You might have a kid who is weak in one area but strong in another," Nadel said. "The profile is going to vary from person to person. The battery will give us a handle on understanding that profile so you might be able to target an intervention in a specific way for a given person. It also would allow as early as possible to understand the likely trajectory for any given child, and what might be the most appropriate forms of intervention."

This is very good news, as it is meant to help us educate our children, not eliminate them, and I will be volunteering to participate in this study. I have done so for many other universities, in order to ensure they have a good sample of subjects for their study. I am most interested in how I can help Christina's improve her speech.

The Down Syndrome Research Group is recruiting children and adults with Down syndrome from age 7 to late adulthood. More information on this and other DSRG studies is available at 520-626-0244 or by e-mail at jedgin@email.arizona.edu.
Read the entire article here.http://www.eurekalert.org/pub_releases/2010-08/uoa-arc082510.php

Happy Mother Teresa Day

Today is the hundreth birthday of one of the most beloved saints of our age; Mother Teresa of Calcutta. Celebrations are being held worldwide. We will be celebrating in our home by praying the rosary in front of her portait in my home (photos to come) and asking her intercession to find a building to start the Ave Maria Home for homeless pregnant women.
I will spend the rest of the day caring for the poorest of the poor in my own home. The cranky, the obstinate, the lonely, the  messy. With a smile
Happy Mother Teresa Day!

Discussion over at Faith and Family Blog

In my new role as director of International Down Syndrome Coalition for Life, I led the discussion when Danielle Bean blogged about Jennifer Anniston using the word "retard" as a pejorative. Several members, at my request, joined in to explain why banning the use of 'the R word' was more than political correctness run amok, it was a refusal to join in on the dehumanization of our fellow man.
 Some, unlike me, object to the clinical use of the term retarded, while I only object to the term "retard" as a derogatory word. The word retard in French means slow, and yes, Christina learns more slowly than others. It is a simple, measurable fact which in NO WAY makes her less worthy of my love or a place in society.  I know words can sound dated; when I lived in London, I passed the "Spastics Society" building every day, wondering how the Brits didn't find that term offensive. I am not so concerned with the evolution of terms throughout time, as the intentional dehumanizing of an entire class of people who are slated for destruction, as evidenced by the 90% abortion rate.
We were battling an intense barrage of people who refused to listen to our side of things, and were fed up with banned words. I understand, with politically correctness dictating so many of our actions in society, that it can be frustrating, however, Catholics must guard their speech and never be a party to the Culture of Death, no matter how burdensome.
 Danielle remained our champion, as you can see by her follow up post in Faith and Family Live blog, where she shows appreciation for my contribution to the conversation.She also expressed so much sorrow at the horrible statistic which haunts my life; 90% of babies diagnosed with Down syndrome in the womb are aborted.
Thanks, Danielle!

Kristin Bothur on Catholic TV Show; "This is the Day"

I was so proud of Kristin, who faced the big cameras, and answered questions like a pro during her interview Friday morning at Catholic TV. First, we attended Mass and were welcomed by host Jay and Fr Reed in the green room, who did a wonderful job of setting her at ease.
Then we went to Quincy Market for a celebratory lunch, and rushed home to share the link with our children.
Congratulations, Kristin!

Watch her on this link.

Queenshhip of Mary and a hidden life

The Friars of the Immaculate celebrate the Queenship of Mary with a beautiful outdoor Mass and potluck lunch. Christina sat during the Mass, holding a bouquet of flowers from our new garden, smelling the fragrant red roses. She knelt in the grass at my side and received her second Holy Communion.
Then we shared a quiche made from our garden's fresh zucchini with the community of 200. We sat with our friends the Bothurs as they planned their house blessing tomorrow. Christina played on the swingset with her friends while I met Patty, a 52 year old woman with Down syndrome and her mother. They seem to have such a close friendship, I could see Christina's and my future relationship in them.
Mary, lived with Our Savior for 30 years in relative obscurity, and, while we prayed the rosary after Mass,  I wondered what He had gained from so many quiet years with only his Mother for company, to prepare Him for three years in the public eye, and for His sacrificial death on the Cross. Looking at that quietly happy pair, mother and adult daughter with Down syndrome, I could see some of the peace and joy which must have filled those 30 quiet years which Our Lady shared with Jesus. What a blessing for both of them it was!

Thank you Mary for this meditation, for your example of the hidden life in Nazareth with Jesus, and for the special relatiionship Christina and I will share when her sisters have grown up and left home, just as she was my only companion at Mass today, patiently holding flowers for you, and resting in my arms.

 It was a blessing to help  her receive Our Lord again on your feast day.

She is truly a gift from God's Hand.

Has there been enough joy this summer?

Although my girls were happy in school, after ten years of homeschooling, I missed them. Sure, there was plenty of time to write, and my blogs were more frequent, but I spent a lot of time planning the fun things we were to do this summer. Now that summer days are dwindling down to that precious two weeks, I look back and ask myself if there was enough joy this summer?
Sure, we decluttered the house, we painted the bathroom, we finally unpacked the wall art and hung it in my room, we helped our friends move, we helped at Birthright, and St Marys' Rummage Sale, we attended Mass more often and began a weekly eucharistic adoration appointment. All these are worthy projects and have made me very satisfied, but did we forget joy this summer?

No, I must say, no, we managed to fit in joy between all this busy-ness. Maybe even because of it.

Weekday Mass and adoration, spontaneous campfires and visits to friends, lazy sunny afternoons spent in the pool, cool twight learning to ride my bike uphill with Molly running alongside (yikes!) enjoying visits with Grandpa, Abeula, Uncle Bill and cousin Mike, sharing the wonder in Christina's eyes when she received Our Lord in the Holy Eucharist for the first time, watching her watch hatching chicks at farm school, two trips to wonderful Monfort Retreat in New Hampshire if only for the day, a week with old friends on Long Island, three, (count em) inspiring writer's conferences in New York, Philadelphia and Boston, meeting famous writers face to face, learningn to take care of our new chickens, finally transplanting my favorite perennials from my home on Long Island,  growing a super-abundant  veggie garden  (we have 300 tomatoes ripening as I write this, I am preparing to can tomatoes for the first time!) and enjoying all this abundant joy to the soundtrack of "O Brother, Where Art Thou?" (See my favorite song below)

There has been so much joy this summer, I haven't shared much of it because of intermittent computer glitches (two of three computers in this house are STILL down) and just plain lack of time.
We may not have achieved all our goals (getting to swim in the ocean, visit Mark Twain's home, Sturbridge Village, and climb a mountain as a family, though Bella did climb one at camp), we still have a week to go. . .enjoy these last precious days of summer with your children.

Kristin's big move

It took me two years, yes, two years to finally fully unpack and feel moved into this beautiful new home. Yesterday, my family and I helped Kristin Bothru of 11 On My Own and her family move into her new home, and today she'll be unpacking books. Books for a homeschooling mom are ususally 50% or more of our boxes when moving, and the last thing to be unpacked, so I am so impressed.
The reporters from the Hartford Courant and Fox 61 were duly impressed as well, and said so, as we formed human chains and passed boxes along smoothly and quickly into the waiting truck. One asked me what our secret was, and I mentioned the fact that we had just coordinated efforts for our parish Rummage Sale. The Holy Spirit made it a smooth and peaceful move, and we finished by saying grace over 8 pizzas, the first prayer in Kristin's new home. I was honored to give the statue of Our Lady a ride, seatbelted into my van, and the photographers loved it, taking photos of her trip, and her arrival in the new home.
I hope we were a witness to the life of Christ in our hearts, and that when this appears on the Fox 61 website and the Sunday August 22 edition of the Hartford Courant, that many people exclaim, "See those Catholics, how they love one another?"
UPDATE: Read the Courant article here, and see the photos here.

 

Fr Benedict Groeschel to speak at Ave Maria Home Banquet Sept 25

Ave Maria Home Gala!

on
Sept 25, 2010,

at the Holiday Inn,
10 Laura Blvd,
 Norwich, CT

Keynote Speaker:

Fr. Benedict Groeschel!!!

Plan to Join us!

Christina's First Holy Communion

Yesterday, on the feast of St Theresa Benedicta of the Cross, Christina Maria received Jesus for the first time in Holy Communion.

Catholic Mom Handbook

Afrer writing for more than a year for Catholic Mom.com, it was a pleasure to meet Lisa Hendey, and learn from her tips for writers. Lisa is as upbeat and warm as she seems online, and she ignited interest in podcasting, just in time for the Catholic New Media Conference in Boston this weekend.

Catholic Writer's Conference

This is the author's reception at the Catholic Marketing Network in Philadelphia this week. My friend Kristin Bothur is down to her last copy of "11 On My Own". I was able to meet the authors of some of the books I am reviewing and those, like Mary Eberstadt's "The Loser Letters", which I am dying to review. We were treated to a preview of "There Be Dragons" which features St Josemaria Escriva (more about that later).

I just returned from the Catholic Marketing Network

Lisa Hendey was quick to upload this photo to Facebook, with yours truly, Lisa, Ebeth Weidner, and Kristina Bothur. It was great to meet you Ebeth and Lisa!

Changing Minds Foundation

Many times I have spoken here and on The Face of Pro-life about Dr William Mobley's research on improving cognition and memory for our children with T21, yet I am suprised to find this wonderful group already holding conferences and doing field research on the research medications.
The Charing Minds Foundation is a group of parent advocates whose children have Down syndrome and are dedicated to supporting Dr Mobley's resarch.
Read their inspiring press release about the recent Houston Conference here.