Disabled Man Teaches Us A Lesson at a Funeral

I recently ran into Peggy a gentle woman who worked in a local school district as a paraprofessional with special needs children for decades. We shared a seat on a bus in September 2009 heading to a Eucharistic Congress for women religious held at the Basilica of the Immaculate Conception.

Here's a wonderful story from her.

I'm so glad I ran into you at the 40 Days for Life Mass. Thank you so much for your book, I am thoroughly enjoying it. I've been wanting to share a story with you. A few weeks ago I went to the funeral of my friend Martha's sister. A long time ago after Martha's parents died, she took over the care of her retarded brother, adding an apartment on to her home for him. A few years ago she was no longer able to care for him and he is now a resident at St. Joseph Living Center. He is 82. He has never been to a funeral. He could never handle it. Even though three of his siblings had previously passed away he wanted to attend this sister's funeral. The staff from the Living Center brought him. When the Mass was over and just as they were preparing to remove the casket, he asked to be brought over to the casket in his wheel chair so that he could kiss the casket and say good bye to his sister. The recessional music came to a stop and in the hush of the congregation he asked forgiveness for anything he might have done to hurt his sister and then word for word he recited an Act of Contrition. That day a lot of people discovered there is a lot to be learned from God's most special children, even into their old age. How many of us would publicly do such a beautiful thing?

New survey says life with Down syndrome is good; so why the high abortion rate?

We who love someone with Down syndrome know this. Life is good. Challenges abound, but the rewards are greater, and far outweigh the sacrifices. When I feel those soft little arms tight around my neck, I forget how long it takes her to get dressed, eat dinner, and walk into school. My heart melts and I am thankful God chose me to raise a child like Christina.
But the common perception is that the difficulties outpace the joys, or there wouldn't be between a 75-92% abortion rate.
Thank you Dr Brian Skotko, for compiling this data which proves that the public perception of life with Down syndrome is wrong. Now we who love these special people need to bring this survey out of hiding into the public eye, to help change hearts. To save lives. 

Leticia & Christina photo by Shana Sureck

Share this post  on Facebook and Twitter  by clicking the Share button on the bottom of the post. Discuss it at your next school meeting, coffee house visit, over the fence chat or TV spot. Write about it to the editor of your local newspaper, or call into radio shows discussing disabilities. Get the good news out, and we'll see fewer abortions of these lovely individuals who have so much to offer our society. 

BOSTON, Sept. 21, 2011 /PRNewswire via COMTEX/ -- Survey results may inform decisions about prenatal testing

Three related surveys led by a physician at Children's Hospital Boston suggest that the experience of Down syndrome is a positive one for most parents, siblings and people with Down syndrome themselves. The results, published in three reports in the October issue of the American Journal of Medical Genetics, may serve to inform expectant parents and clinicians providing prenatal care.

"New prenatal tests for Down syndrome are set to come out as early as the end of this year," says Brian Skotko, MD, MPP, a clinical fellow in genetics at Children's Hospital Boston. "Many more women will then learn about the diagnosis prenatally and will need to grapple with very personal pregnancy options. In previous surveys, mothers have reported receiving inaccurate, incomplete and occasionally offensive information about Down syndrome from their healthcare providers."

Skotko and collaborators Susan Levine, MA, CSW, of Family Resource Associates (Shrewsbury, NJ) and Richard Goldstein, MD, of the Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, sent surveys to 4,924 households on the mailing lists of six nonprofit Down syndrome organizations around the country. The surveys asked respondents to rate their agreement with statements on a scale of 1-7, and also included some open-ended questions.

The first study evaluated surveys from 2,044 parents or guardians, representing an estimated response rate of 29 percent. Its findings:

99 percent of parent/guardians said they loved their child with Down syndrome

79 percent felt their outlook on life was more positive because of their child

5 percent felt embarrassed by their child

4 percent regretted having their child.

The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:

94 percent expressed feelings of pride about their sibling

7 percent felt embarrassed by their sibling

4 percent would "trade their sibling in" for another

88 percent said they felt they were better people because of their sibling with Down syndrome

Of siblings aged 9-11:

97 percent said they loved their sibling

90 percent felt their friends are comfortable around their sibling

The third study evaluated survey responses from 284 people with Down syndrome (estimated response rate, 17 percent). The average age was 23, and 84 percent were living with one or both parents/guardians. The findings:

99 percent said they were happy with their lives

97 percent liked who they are

96 percent liked how they look

86 percent indicated they could make friends easily

4 percent expressed sadness about their life.

"As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome," says co-author Levine. "And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable."

In open-ended questions, parents reported learning a variety of life lessons - the top five being: personal self-growth, patience, acceptance/respect, love, joy. Asked what they would tell other prospective parents of a child with Down syndrome, the top responses fell into these categories:

You will experience joy/rewards

There will be struggles/challenges

You will experience love

Important to identify good support group/resources

Children with Down syndrome are more alike than different from typically developing children.

Siblings, asked what they would tell prospective parents having a child with Down syndrome, most often conveyed that the experience would be joyful and rewarding, though many also said there would be challenging moments.

Respondents with Down syndrome most often gave these kinds of messages for parents:

Love your baby/your baby loves you

Life is good/happy to be alive/positive

Don't worry/it's okay.

Their main messages for doctors were:

Life is good/I'm happy to be alive/positive

Please take care of our medical needs

Please give information to parents about school options for people with Down syndrome

Value us/we're okay.

The researchers acknowledge that the surveys are subject to selection bias, since members of nonprofit Down syndrome groups may not be representative of the general population of Down syndrome families; respondents were largely white and middle to upper class. There is currently no population-based registry for people with Down syndrome.

"Prenatal decisions about Down syndrome present profound and deeply personal challenges to expectant parents," says co-author Goldstein. "What has been missing has been the perspective of those living with Down syndrome. This study now provides the largest and most comprehensive portrait of life with Down syndrome to date."

The studies were supported by grants from the Tim White Foundation, the Fred Lovejoy House-staff Research and Education Fund, and the Joel and Barbara Alpert Endowment for the Children of the City.

Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 396 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Children's, visit: http://vectorblog.org .

CONTACT: Keri Stedman Children's Hospital Boston             617-919-3110      keri.stedman@childrens.harvard.edu

SOURCE Children's Hospital Boston

Copyright (C) 2011 PR Newswire. All rights reserved 

October is Down Syndrome Awareness Month

Celebrating the happiness which my daughter Christina with Down syndrome adds to the world around her. She takes joy in the simplest things and her joy is infectious.
Linking up with the bloghop for Down Syndrome Awareness Month.

Guest Post at Melanie Juneau's Blog

Blogger Melanie Jean Juneau has graciously allowed me a guest post in her blog so go on over and show this mother some love!

Why I Should Move to North Dakota

Christina and Daddy at the beach this summer. 

I don't have a paying job at this time, but I am very busy. Even though I no longer homeschool, my house is messy and my girls are over ten. I spend most of my day on Facebook and Twitter.

Why?

Christina, my daughter with Down syndrome is growing up in a world where no one invites her over to play. Children avoid her on playgrounds and at school. She has never been insulted to her face, but she certainly gets some weird looks. I imagine that some people who see her are happy they don't have a child like her; she is challenging, and, well, different.

She has Down syndrome.

The main reason that I am on the Internet all day is to make the world a better place for her to grow up. Sometimes my work involves her particular circumstances, such as seeking out successful speech therapy strategies, sometimes it involves investigating and promoting promising research, passing on inspiring stories or violations of human rights, but most importantly I strive to raise awareness in society that having a child with Down syndrome has an up side. Many of them. And they have a right to be here, even if they didn't have anything to give. Because we all know that those whom the world often rejects can be the best givers.

Anyone who has heard me speak or read this blog knows I could go on for days about Christina's good qualities, the way she had the best belly laugh in the world, gives the tightest hugs, and teaches her family about the true nature of love. I am hardly alone in these observations, most families raising a person with Down syndrome will bend your ear for hours with such talk.

But the cold, hard fact remains, that when expectant moms find out they are carrying a child with Down syndrome, the majority (sources say anywhere between 75%-92%) abort them. And with new, non-invasive testing, the numbers are poised to soar. We may see nations who, via prenatal testing and abortion, virtually eliminate Down syndrome (which is not inherited, it occurs randomly) from their populations. Some, like Denmark, and possibly the US, see that as an advance. Eugenics is alive and well, it just looks neater than it did in the forties.

So, a child with Down syndrome is seen by most people in society as bad news. And this mom, along with legions of other parents of kids like ours, want to fix that.

But being a full time advocate doesn't pay well. In fact, I barely make my travel expenses to sell my book

A Special Mother is Born away from home. So I want to change society into one which accepts children like Christina, embraces them for who they are while supporting them as they develop and go out to achieve their life goals all the while making us better people.

So what does this have to do with moving to North Dakota?

I would be a more wealthy, relaxed, fit mother with a cleaner home if I live in North Dakota. Here's why;

A federal judge has dismissed part of a lawsuit challenging a new North Dakota law that blocks abortions based on unwanted gender or a genetic defect, such as Down syndrome.

According to this article in Life News, I would be out of work in North Dakota. They are about to welcome all babies with Down syndrome into the world. Such a measure is being considered in Spain, and all I can say is "Que Viva!"

Someday, we will come to our senses in America and ban all abortions, welcoming all children into life. My daughter will be accepted by her peers, and live life to the fullest. 

And I will finally learn to ski.

Does God only give special needs children to special parents?

Christina praying for Grandma to go home safely to Heaven.

Rick Smith, the effervescent dad of "Noah's Dad" fame didn't see it coming. He ignited controversy by saying he wanted to "whack" the saying that God only gives special children to special parents. Tempers ran high and he was stunned to be attacked. He answered with typical good sense and a sense of humor, Christian charity, which is why, even though I disagree with his statement, I wanted to comment on it. We both understand that if God were selecting parents of children with special needs, He's doing a crummy job, since around 90% of these parents abort their baby before they realize what a blessing they said "no" to.

So maybe we special needs parents aren't so special. But hold on, I am not ready to toss out the special parent idea just yet. Which one of us hasn't marvelled in the patience we see in the mom or dad who, like Rick, take extra time to teach their babies the simplest skills and broadcast them over the blogosphere as if a new planet had been discovered?! The joy in their beaming faces is a foretaste of heaven, isn't it?
We can see God's grace at work in them, but just how did it get there. Hint, it starts with the word "yes".

When we conceive a child with special needs,  Our Heavenly Father offers each parent the opportunity of receiving abundant grace (supernatural power to help her or him overcome natural weaknesses and act more like God) in order to parent this child who will require extra amounts of patience, perseverance, hope, and faith. Never mind that that child will return those gifts in abundance, but the expectant parent doesn't hear that at first, most often they are given the "prenatal testing horror show" by their OB and genetic counselor: a list of things which may go wrong with the child physically or mentally. Sometimes it even gets personal. Some parents I interviewed for my book told me that the doctor told them this child will ruin your life, or break up your marriage. Really, that's going a bit beyond prenatal diagnosis, don't you think?

The parent, as you have indicated, is terrified, and overwhelmed by the news and far too often, in fear, says "no" to God and aborts the baby. This is the tragic consequence of free will, but the loss is not only the life of the child, but the beauty God was going to create in that soul by means of raising that wonderfully challenging child. And you don't have to be a Christian to allow God's grace to transform you via your child with Down syndrome.

Dr Brian Skotko's survey said that 97% of siblings of children with Down syndrome say they are better people because of being special siblings. Did I mention the 99% rate of happiness reported by those with Down syndrome and their parents? Being Christian is not a prerequisite, just saying "yes" to God is by giving your child with extra chromosomes life opens up a new world of beauty which only those of us who are farther down the road can see. Every time I speak on live radio, the station is flooded with calls from people with stirring testimonies on how someone with Down syndrome made a wonderful difference in their lives. Some of the testimonies are decades old, but the effect remains. Many are parents, but some are just teachers, neighbors, friends, and siblings. Those people who are remembered so fondly are not angels, they are flawed human beings BUT there is something pure and holy about them, which brings out the best in us. Where does it come from? God, of course. All good things come from His Hand.
Just read this piece I wrote about how Christina helped us through my mother's death from cancer.

So, when I saw those saintly old ladies in church gently guiding their 40-somethings with Down syndrome and concluded, "God can't give me a child like that, I am not holy enough". I was right. And wrong. Right I wasn't holy enough. Wrong, that God couldn't give me a child like my wonderful 11 year old Christina with Down syndrome. He had a plan for my life, and He told me while I was in line for Communion, "I want you to accept this child as a gift from my Hand." I said "yes" before I even believed I could become one of those elderly, saintly mothers of special needs children.

What I forgot was, those old ladies were my age when God gave them their special needs children, and may have had my impetuosity, hot temper and lack of patience. But, like me, they told God "yes", and day by day, in His grace, they were shaped and fashioned into the saintly images of God I admired in church. They probably thought the same thing about not being up to the challenge of raising a son or daughter with Down syndrome. But we have learned that God doesn't call the prepared, He prepares the called.

So that is why my book of 34 stories from such parents is called "A Special Mother is Born". Because the child and the mom/dad both go through a birth when a child with special needs is born. The parents, is a rebirth, akin to being 'born again' when one enters life in Christ in Baptism. God makes them into special people whose child, like all children, is an agent of grace making them fit to be called home to heaven one day.

When Our Special Needs Children are Rejected

Karla Begley, of Newcastle, Ontario, wept as she read portions of the hate mail to local news. She is the  mother of 13-year-old Max, who was diagnosed with severe autism at the age of two.

Christina at the Mystic Aquarium autism day.

Watch her break down in tears trying to read the letter to a news crew in this video. 

The following is from Life Site News:

“I also live in this neighborhood and have a problem,” the writer stated in the one page letter that was received on Friday. “You selfishly put your kid outside everyday and let him be a [sic] nothing but a nuisance and a problem to everyone else with that noise polluting whaling [sic] he constantly makes!!!”
“That noise he makes when he is outside is DREADFUL!!!!!!!!!! It scares the hell out of my normal children!!!!!!!” it says.
“When you feel your idiot kid needs fresh air, take him to our park you dope,” the letter reads.
Calling the boy a “hinderance to everyone” the letter writer states that “no employer will hire him, no normal girl is going to marry/love him and you are not going to live forever”.
“Personally, they should take whatever non retarded body parts he possesses and donate them to science," the letter said. "What the hell else good is he to anyone!!!”
“You had a retarded kid, deal with it…properly!!!!! What right do you have to do this to hard working people!!!!!!! I HATE people like you who believe, just because you have a special needs kid, you are entitled to special treatment!!!”
The letter ends by asking the mother to move or have her child terminated.
“Do everyone in our community huge a [sic] favor and MOVE!!!!”
“Go live in a trailer in the woods or something with your wild animal kid!!! Nobody wants you living here and they don’t have the guts to tell you!!!!!”
"Do the right thing and move or euthanize him!!! Either way, we are ALL better off!!!”
The letter is signed: “One pissed off mother”.
Max’s father said he was scared for his son’s safety. “A person who is that crazy or demented who would fabricate something like that leads me to believe that they are very dangerous.”
Neighbors say they will discover the identity of the person behind the letter. The family is open to pressing charges. 

Those of us who are raising special needs children who can sometimes have irritating habits find this sort of news terrifying. My eleven-year-old daughter with Down syndrome sometimes makes odd, loud noises. She frequently behaves inappropriately in public places.  It chills me to think there might be people in my town who think about her like this. Just this summer, I gave a talk in our small town's library about Christina, whose story is told in my book, A Special Mother is Born. I explained that sometimes Christina does unexpected things, like using the employee bathroom in the local pharmacy, but that with the right attitude, these mishaps become opportunities to meet my neighbors. I am now friends with the pharmacy's understanding manager, who laughed at the incident.

But as the letter makes clear, not all of us are lucky enough to find such kindness in our community. We live in a culture of death where inconvenient,differently-abled, noisy children are aborted before they become 'problems' to our neighbors. Autism can't be prenatally diagnosed yet,but the angry mom sees no problem with euthanasia. Its the same mentality. Kill the child who is inconvenient. Don't learn to live with them, or teach your children to accept differences. Don't grow in tolerance and acceptance like the parents who contributed stories of raising their special needs children to my book.

That's why the worst question you can ask the mother of a child like mine, who could have been prenatally diagnosed and aborted their baby is, "Did you know?" the hidden question behind this is, "Didn't you have testing to see that she had Down syndrome?" The implication is, "And you STILL gave birth to that nuisance?" Since when does a mother have to justify her child's existence to absolute strangers? Since we have a 'choice' about whether they live or die. We become responsible for bringing inferior children to the community. We have a duty to weed out "life unworthy of life", according to the culture of death.

 It is a possibility that this angry, bitter woman suffers post abortion syndrome. Maybe she aborted a child with a disability and this boy reminds her of her pain every day. 

Eleven years ago, I took my newborn daughter with Down syndrome to the softball field to watch her sisters' games and received a less than warm welcome.  We never went back again and my ball playing daughters were never invited to play in the league again. Seven years later I was told that the reason my newborn wasn't welcome is because a mom who had just aborted a child with Down syndrome saw her as a painful reminder of her tragic 'choice' to kill her child. She was related to the girls' coach. My family was eliminated from the sports community in order to make this woman suffer less. 

Our special needs children are what Blessed John Paul called "signs of contradiction" in the culture of death and we can expect some hostility. In that way they are participating in the Cross of Christ, helping mothers like the one who wrote the awful letter, and the one who banished us from the softball field, learn to love.

Read the entire article at Life Site News.

Would Christina Choose not to have Down syndrome if she could?

Mary Keily has written a very thoughtful article about her daughter with Down syndrome and the new advance which shuts off the third copy of the 21st chromosome. She says. . .

Would Christina choose to have Down syndrome? I very much doubt it. Sometimes when our family is gathered around the table joking about one thing or another, Christina will turn to one of us and say sadly, “What are you guys laughing about?” In those moments my heart seizes. I wonder what fences she feels herself to be standing just outside.
And some of the losses Christina doesn’t even know about yet. For example, I haven’t had the heart to tell her that her dream of being a mom is one that will not come to pass, given her current level of capability. Our oldest child, 19-year-old Bridget, says that if she has babies someday, she will share them with Christina. It’s a beautiful impulse, but adult life can get complicated. Time will tell.
When I was pregnant with Christina, my husband and I were told, on the basis of my triple screen prenatal blood testing, that she was at high risk of having Down syndrome. We decided to bring her into the world anyway, feeling we were not wise enough, could not ever be wise enough, to assign a value to her life. I have never regretted that decision. Christina has been and is deeply loved.
But I also have no doubt that I would treat her Down syndrome if I could.

Read the entire article here.

We have a lot in common; my eleven year old daughter is named Christina and she has Down syndrome and possibly autism as well. We are still seeking our third psychological evaluation to determine if the loss of speech and cognitive abilities she experienced in  elementary school was due to autism. No one seems to understand why she can't speak anymore and has never learned to read more than a few words in seven years of school.
I agree that she would not choose to have Down syndrome if she could, she is isolated from the family not by our choice, but her lack of language makes some activities impossible for her to participate in, and we feel terribly guilty. Then she gets frustrated and throws something (I don't blame her) and goes off again to watch a movie alone.
 My heart breaks for her loneliness. She has no friends, despite our best efforts,her lack of language makes it very difficult to play with her and only the rare child has the patience and understanding. Most just walk away staring at her.
  Although she has made us better people, teaching us the same lessons you mentioned; clarifying priorities, learning to look at the soul not the exterior, we see her despondent at times as she struggles against obstacles she can't understand.


 That's why I hate Down syndrome but love Christina.
Just like Dr Jerome Lejeune who discovered the third copy of the 21st chromosome and spent the rest of his life seeking to cure Down syndrome out of love for his patients. He said, "Hate the disease, love the patient, That is the practice of medicine."

Who wants this pre-born baby with Down syndrome?

The answer: nearly one thousand people from around the world. Here's the story.

When I read the email, my pulse quickened. As the mother of an eleven-year-old girl with Down syndrome, I oftenhelp parents cope with the prenatal diagnosis of Down syndrome. This email was urgent,

“There is a couple in another state who have contacted an adoption agency looking for a family to adopt their Down syndrome unborn baby. If a couple has not been found by today they plan to abort the baby. If you are interested in adopting this baby please contact Fr. VW IMMEDIATELY. We are asking all to pray for this baby and the wisdom that this couple realize the importance of human life and do not abort this beautiful gift from God.”

Read the entire story here.

Is Shutting off the Third Copy of the 21st Chromosome an Insult to My Daughter?

After what was billed as an amazing breakthrough, a harbinger of hope, researchers at University of Massachusetts managed to 'turn off'' the third copy of the 21st chromosome in a petri dish, many parents who love their children with Down syndrome are feeling that this line of research is ultimately a rejection of the children they love so deeply. Its easy to understand that point of view, after all, the world harshly rejects the great majority of unborn babies with Down syndrome, aborting them at a rate of 75-92%, with new tests like MaterniT21 threatening to raise that already high rate. They have learned to love their special children as they are, delays, medical needs and all, and feel strongly that the type of research which 'shuts off' a chromosome will somehow alter their lovable personalities. I love these people and deeply admire their devotion to their beautiful children, its a fundamental value which we share, yet I see things differently.

Once in the middle of a live TV interview, Canadian show host (and ardent pro-lifer) Michael Coren asked me what he described as a difficult question, "Would you, if you could, take your daughter's Down syndrome away?". I tried not to stare into the remote camera like a deer in the headlights, but he had caught me flat footed. I fumbled for an answer, not wanting to offend those folks I just described,  answering that I knew that Down syndrome was part of who she was, but that if research advances were safe, I could see myself using them to help her be able to speak, that being able to know her thoughts would be a great blessing. I sought a clearer answer, and perhaps there is none, but I will express my thoughts on this controversial topic anyway. Let's see if it gets me into trouble.

The third copy of the twenty-first chromosome caused my daughter's brain to become muddled in her fifth year of life. She was putting words into little short phrases and happily engaging those around her. We had every reason to believe that her IQ of 69 indicated that she would benefit from inclusive education and would progress, perhaps more slowly than her typical peers, but surely would be able to read, speak and make friends in order to live a happy, fulfilled life. We moved from Long Island to Connecticut so that she could benefit from the inclusive classrooms there. Life was full of promise.

By the second grade, it became clear that this dream was not becoming reality. Christina spoke less and less, struggled to maintain interest in her surroundings, and reading was progressing much more slowly than we anticipated. At her pediatrician's insistence in third grade, I began to seek evaluations from well known speech and education professionals to understand why my daughter was losing language. We found little to encourage us that she would change, and the school put her into a resource room for students with autism, although she has never been diagnosed with autism. The University of Connecticut Speech and Hearing Clinic evaluated her and worked with her for four months with some success, saying she had a language processing disorder. Her neurons in the speech center of her brain do not connect. She has lost many connections which used to exist, and the vocabulary of a hundred words she had has nearly disappeared. What is causing this? The extra copy of the 21st chromosome which is over expressed, like a broken record, sending out signals which confuse my daughter's speech center, isolating and confusing her and cause her to turn inward, watching DVDs for hours and playing with her stuffed animal, her only friend.
Her IQ is now 20.
Down syndrome did this to her

How does her future look right now? Bleak, unless there is a medical breakthrough. Only her family or those who can understand Touch Chat on the Ipad can communicate with her. Children reject her odd mannerisms as she tries to communicate with them. She often resorts to throwing things to gain attention, and there has been talk of medicating her to control these behaviors. I am heartsick.

Why shouldn't I be thrilled to know that in ten years there may be a medication or gene therapy which can repair this terrible damage to Christina's brain?
 I want her back, the happy smiling little girl who sang part of "Old MacDonald Had a Farm" with her daddy in a home video when she was five.That video makes me cry now. I miss the little girl who wanted to be best friends with everyone she met, whose future was promising.
My daughter is trapped by Down syndrome's mistaken messaging in her brain. Do I love her as she is, even if she never speaks again? Of course I do! Do I want her to speak with all my heart so that she can find more happiness in the world, in friendships, reading, and fulfilling work?
Of course I do.

So, excuse me if my heart skips a beat when I hear about medical breakthroughs which might bring back my daughter, my true daughter to me. She is not the sum total of her chromosomes, Christina is far more than that, but she is deeply affected as we all are by her genetics. They do not affect her soul, but who else but those of us who love her will see the beauty in that soul if she can never speak again?

Charlotte Saved the Party for Me

This is a true story told from the point of view of my daughter Christina when she was eight. She is 11 now.
It was a creepy place, that Haunted Mini Golf. The walls were black, fluorescent ghosts floated everywhere, scary music was playing really loud, and stinky smoke was coming up from the floor. Yuck!

I stopped at the front door, thinking maybe I didn’t want to go into that noisy place. Kids were screaming in there! I hate dark, noisy places like movie theatres. I thought, “How would a birthday party in there be fun anyway”? I tried to back out, but my mom held my hand tightly and I knew that if she was going in, I had no choice. We walked in, and, as we stood in the entry, our eyes got used to the dark, but Mom and I didn’t recognize anyone, so all I wanted was to get out of there, and go home. I started pulling on Mom’s hand as I walked towards the door. I started to cry.

Suddenly, out of nowhere, I saw Charlotte. She left her party in a quiet room when she saw me looking scared. “Its okay” she told me, taking my hands with a big smile on her face, “all our friends from class are here, come and see.” Charlotte led me into the party room, and soon I saw all our friends from Mrs. Driscoll’s second grade class. They were playing a cool game of glow-in-the-dark mini golf, and gave me a hot pink golf club which matched my pants. I hit the ball into the little house after a few tries, and I wasn’t afraid any more. Then we got some glow-in-dark bracelets and danced to music we like at school, the bracelets made circles in the dark. Next Charlotte’s mom served pizza and soda. Next we ate some chocolate cupcakes with green crunchy sprinkles. It was fun to be with my friends even in that weird place, and I had a great time with Charlotte, who played with me the most of anyone. I was really happy she saw me and helped me come inside her party. Next time she had a party, I wanted to go, because she is really nice. She doesn’t care if I get scared sometimes or that I’m shy and have trouble making friends.

I am eight years old and have brown hair and brown eyes. I have two older sisters and we have three cats, one dog, and six chickens at our house. I like to wear my pink-polka-dot crocs every day to school, because they are comfortable and easy to put on. I am supposed to wear glasses, but I don’t like them very much. My favorite colors are hot pink and purple.

Most people notice how I look different, and how I can’t talk like everyone else. Sometimes it’s hard to remember the words I want to say, so I use my IPad and sometimes I talk with my hands. Not too many kids understand me, and it makes me embarrassed when they stare at me. Once, in the library, two kids asked my Mom what country I come from, because I talk differently, so she told them don’t come from another country, I just have Down syndrome. Sometimes kids at school don’t know what to say to me because I don’t speak very well, so they go and play with someone else. Ouch, that hurts my feelings! I just want to be part of the group when everybody’s playing a game. Why can’t I just play with everyone else?

That’s why I like Charlotte. She doesn’t care if I forget my words, or I look different. She doesn’t laugh at me when I can’t run like the other kids or when I trip and fall. At recess, I can’t go on the playscape because my neck might get hurt. It makes me sad because I used to play follow-the-leader with all the kids together. Charlotte comes and plays catch or hula hoops with me. Sometimes she brings a friend with her and we all play hopscotch. Those are the best days. I like Charlotte very much. I wish more kids were like her. When she smiles, my heart is happy and I smile too. Charlotte saved the party for me, and she is my best friend. I wish there were more kids like Charlotte; the world would be a happy place.

Company d "Who I Am" Music Video

CAMILO Sesto---((Un mundo mejor---))tribute to his son with Down syndrome

Functional MRI at University of Utah gives researchers great insight into how brains with Down syndrome function

Before we can repair the neuronal connections in the brain which are not functioning, we have to see where they are. This new use of Functional MRI has the potential to pinpoint the over-connectedness or lack of connections between different parts of the brain of a person with trisomy 21.
Watch the news video here.
 http://www.ksl.com/?nid=148&sid=25547848&fm=most_popular#ooid=tmeWdiYzpM_o889SIR9KgktgU6NqSKJs

The Tragic Death of Robert Gensiak, 32, with Down syndrome

I started this blog to share the joy of raising a child with Down syndrome, but sometimes my heart isn't joyful.  The tragic realities of those who cannot love people with Down syndrome often haunt me, I can't sleep tonight because I read this news story of a man with Down syndrome named Robert Gensiak, age 32 who died of neglect, while living with his mother and two sisters.  My heart is broken.

For two years, Robert Gensiak's world was his bedroom.
It was there, his family kept him from doctors, even when his skin cracked and bled and open sores formed from being forced to stay in his child-sized bed covered in feces.
And it was there, the 32-year-old Taylor man with Down syndrome wasted away to 69 pounds because his mother and sisters were starving him to death.
On Wednesday, about three months after Mr. Gensiak died, police charged his mother, Susan Gensiak, 59, of 12 Williams St., and two sisters, Joan, 35, and Rebekah, 24, with murder.
Read the complaint HERE"This is the worst case of neglect I've seen the last 26 years," said Lackawanna County District Attorney Andy Jarbola at a press conference Wednesday. "This family, the mother and two sisters, basically let this young man rot to death."
Mr. Gensiak had been weakening and could not walk without assistance by the time the family called an ambulance on March 19 at the urging of his doctor, Paul Remick, D.O., whom they had not taken Mr. Gensiak to visit for two years. Mr. Gensiak was taken to Regional Hospital where doctors said he had severe psoriasis associated with hypothermia. His body temperature was only 92 degrees.
He died March 20, and weighed just 69 pounds, police said.
An autopsy conducted by forensic pathologist Gary W. Ross, M.D., revealed an extreme case of neglect. Autopsy photos show his skin was a sickly yellow with cracked areas that had oozed with blood and fluid. Open sores pockmarked his body, so extreme in spots that his bone was visible. As a matter of taste, The Times-Tribune is not publishing the photos.
The remaining teeth he had were loose and ready to fall out. Lice covered his head. Dr. Ross found no food or significant fluid in his stomach.
"It's amazing to me that anyone could allow someone to go through this type of pain and torture," Mr. Jarbola said.
His official cause of death was sepsis, due to the breakdown of his skin, plagued by a widespread infestation of Norwegian scabies. His open sores and malnutrition also contributed to his death, Dr. Ross said.
Lackawanna County Coroner Tim Rowland ruled the manner of death as homicide due to neglect.
The house itself did not appear overtly dirty, but it was cluttered, investigators said. At a glance, there would be no indication that there was anything seriously wrong.
But when investigators opened the back bedroom where Mr. Gensiak was kept in seclusion, an overwhelming wave of human waste washed over their sense of smell, Lackawanna County
Detective Castellani described Mr. Gensiak's room as a scene of utter filth. The child-sized bed he had to sleep on was covered in fecal stains, as was a chair he would sit on.

Robert's mother hadn't taken him to the doctor in two years, saying she had no transportation, and her only concern was to ask if his SSI checks would be discontinued after his death. There is no excuse for these three women to treat their sibling with such unimaginable cruelty. They are all in prison tonight, three months after Robert's terrible death. Robert is resting in the arms of the Lord tonight, and I think he is asking God for mercy on his family. That's what people with Down syndrome do. They give love unconditionally. They are prodigious givers, they do not take what is not theirs, they show love openly and do not treat others cruelly. The family of Robert Gensiak are the handicapped ones. They are without functioning hearts. 

Tonight as my daughter Christina slept, I prayed the Rosary for this situation and all those people with Down syndrome who are suffering in silence as Robert did. As I prayed the Rosary,  I took the psoriasis medication we bought for Christina, and, as she slept, and I anointed her scabs (many times she won't allow us to do this while she's awake). I was giving her the tender care poor Robert needed so desperately and never received. I felt as though I were touching the wounds of Jesus, and indeed I was, as He said, "whatever you do for the least of these, you do to Me."

Jesus, teach us to love those whom You have entrusted to our care. Teach us to serve them in love and tenderness, and with sacrifice not self interest. Please have mercy on the vulnerable people with Down syndrome like Robert Gensiak and Ethan Saylor and teach us to love them as they love us. 

If you see abuse like that suffered by Robert Gensiak, do the right thing, call 911. 

New Clinical Trials Offer Hope for the Future of Those with Down Syndrome

When Dr Jerome Lejeune discoverd trisomy 21 in 1959, the cause of Down syndrome, he intended to focus research in how to prevent the third copy of chromosome 21 from causing the congenital defects associated with Down syndrome. Tragically, the science was hijacked by an an effort to 'prevent' birth defects, in which researchers paired the karotype of trisomy 21 with emerging technology of amniocentesis, and the first prenatal test came into being.
 Shortly thereafter, the first abortions of a babies with Down syndrome took place in the early 1960's while abortion was still illegal in many states.As it is today, these tests were billed as 'lifesaving interventions' when they led to the death of thousands of babies with Down syndrome. It seemed that science did not count those lost lives in calculating the value of prenatal testing.
 This horrified Dr Lejeune, who intented to improve the situation of the person with Down syndrome who at the time were consigned to lives lived out in dreary institutions where they were not educated, but merely warehoused.  He envisioned a similar supplement taken during pregnancy to mitigate the effects of Down syndrome on the developing baby.It was the same Dr Lejeune who helped bring attention to the efficacy of folic acid in preventing neural tube defects when taken in pregnancy, so he had every right to expect this.

 Instead the 'cure' was to kill the child through eugenic abortion, abortion done to certain babies because of their genetic diversity. And in its early days, this was touted as 'lifesaving' since previously, women were counselled to abort if they were close to forty simply based on statistics saying that their chances of giving birth to a child with Down syndrome was elevated (around age 40 the chances are around 1%, hardly high risk).
This begs the question;
What kind of medical intervention kills rather than cures the patient?

 Dr Lejeune said, "Again and again we see this absolute misconception of trying to defeat a disease by eliminating the patient! It's ridiculous to stand beside a patient and solemnly say, 'Who is this upstart who refused to be cured? How dare he resist our art" Let's get rid of him!' Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patients side, always."

No attention was given to helping mitigate the effects of Down syndrome in living children. It as considered impossible, and frankly, not worth the effort. Parents like me who chose to carry our babies with Down syndrome to term were told that the only 'solution' was prenatal search-and-destroy. The Final Solution. There was virtually no research being done in Down syndrome. Dr Lejeune was one of few researchers who was seeking a cure. He said, "I see only one way left to save them, and that is to cure them. The task is tremendous, but so is hope."

Now science has taken a different tack, thanks in part to parent advocacy and leaders like Dr Brian Skotko Pediatrician at Massachusetts General Hospital Down Syndrome Program, bioethicist Mark Leach,   Rep Cathy McMorris Rodgers, founder of the Congressional Down Syndrome Caucus, Down Syndrome Research and Treatment Foundation, and the Jerome Lejeune Foundation which supported the research I note below, and my own KIDS Keep Infants with Down Syndrome.  

Without their insistence that our kids deserve better than, immense and hopeful progress has been made. Now clinical trials of a new substance RG1662 in Roche Labs is showing great promise to improve the lifestyles of people living with Down syndrome. The National Catholic Register reports;

A cautious Roche spokesman, neuroscientist Dr. Luca Santarelli, said in a statement, “Our drug may offer a novel therapeutic avenue to treat the cognitive deficits in people with Down syndrome, enhance their communications skills and ultimately help them have greater independence in their daily lives.”

http://www.ncregister.com/daily-news/new-treatment-could-improve-thinking-memory-in-people-with-down-syndrome/

For the first time since Dr Lejeune's discovery in 1959 there is major scientific effort invested in saving the lives of those with Down syndrome, and maybe someday, when a woman faces a prenatal test which tells her that her child has an extra chromosome, she will have a positive response based on  hope for scientific discoveries like these,  rather than a fearful one based on outdated stereotypes.