It is so refreshing to have my 2 year old daughter Abrielle walking all over the house. A HUGE accomplishment for her; a goal we had set 8 months ago. It is hysterical to see her curious her little mind at work. It’s almost like she is thinking “WOW Mom, finally! I have been looking at all of this stuff for months wondering how I could touch it!” When they get to this point, you realize just how much our little blessings are just like a typical toddler. In the grand scheme they are “typical” but more determined than the “typical”, and I will take that any day of the week!

It is bittersweet that this time of year everyone starts talking about the one day they can be thankful for the things in their lives and how excited they are to be approaching the holidays. It is this same time every year that I remind people that I know that we should be thankful and give thanks EVERY day… that is a tradition that I have adopted and encourage others to adopt. With life scurrying along around us, we are so quick to pay more attention to the yuck and muck that life throws our way simply because if you watch news, read popular magazines or read the paper; you are bombarded with negative, depressing and unhappy things that are going on putting us in the frame of mind to focus on what is wrong in our lives as well. This is exactly why I choose instead to read things I have written, such as old diary entries and journals or books that inspire me with stories of adversity. Reading things like this put into perspective how my life has truly changed, how it has had ups and downs but through it all I have survived. It is encouraging and lifts me up and THAT is what I like to feel.

I hope everyone has a great Thanksgiving with their family and I hope that you adopt the tradition of being thankful for your blessings every day. Be thankful for the troubles also;  each one is there for a lesson and with the right attitude will help you on our journey in a positive way.

~Shelley~

Read more of my writing on my Facebook fan page for my book coming out next year.

http://www.facebook.com/pages/I-Need-The-Happy-Ending-By-Shelley-Giard/137541586273406

I know that some of you may be tired of hearing me talk about my daughter and her Down syndrome…. but I had to share this story as it can inspire you in other ways. 8 months ago, my daughter Abrielle who just turned two could only roll to her tummy and sit up if you put her in that position. Her first therapist who had worked with her since she was 3 weeks old was very nice and sweet but in my opinion was not aggressive enough in the therapy sessions. So… I requested and started with a new therapist in late January of this year. I had set many goals for Abrielle and told her new Physical therapist that I hoped for her to be walking by her second birthday. She quickly said “okay” and that was it. Well… Abrielle took her first independent steps on her birthday and now two weeks later is walking all over the house. Thank you Michelle Keohane Caravello for believing in and pushing my little girl as much as I did. I encourage all of you who have children to EXPECT your little wonders to be amazing, to achieve and guess what? The more people they have around them that believe and encourage them, they CAN and WILL accomplish anything. They have more determination than average kids or any adult for that; they want to achieve so believe in them! I am sharing her milestones with the world not to brag but to inspire and educate others. We just posted a new video of her standing on her own and walking taken just days after her 2nd birthday. Watch and share her videos with others so that more people will know what precious gifts they are! THANK YOU!
www.youtube.com/user/MyAmazingBrie

Wow…  it has certainly been a long time since I wrote a blog post for the site,  I suppose it does not seem that long simply because I use Face book so much to update those close to me. For the past year I have certainly been busy as a single career- mom of  4 children, and I also spent endless nights over the last year starting and completing  my first book… a memoir that will  be out by this time next year.

Abrielle has traveled leaps and bounds in the past year as I am happy to share the highlights. She is quickly approaching 2, which is surreal to me as I recall the very day I found out about this special blessing that I would have the honor to raise. My journey thus far has not been nearly as difficult as many stories I read, however the message is still the same. I, like all of you… have been chosen by God to love, embrace and mold a special child. It is up to me and those that are part of her life to encourage, uplift and teach her that she can do anything she puts her mind to. I have become her cheerleader… as I am to all of my children; but I would be lying if I said my experience with her was not different. Abrielle is different; she has more patience and less frustration than I have ever had, she smiles even when she should frown, she laughs at the simplest things and she never EVER gives up on a task… her determination and finesse truly amazes me. Want to know the most extraordinary thing about all of these qualities that she possesses? She has rubbed all of these qualities off onto to me and I find that I am more patient, happier even when my day is not so great and my already determined nature has been strengthened by her existence.

Over the past 9 months, she has conquered sitting up from a horizontal position, crawling, pulling to a stand, feeding herself a cheerio, and walking behind a push toy. I have absolutely NO DOUBT that she will be walking independently by her 2nd birthday which is just around the corner on October 16th. Her cognitive and fine motor skills are way above the D.S. average for her age and although I know every case is different and unparalelled to any other, I truly feel that my expecting her to reach these goals and encouraging her to achieve the “baby steps” has made all the difference in the world. Remember that they ARE more alike than different so treat them no different than you would a typical child and they WILL achieve.

My message to all of you is no matter what, encourage your little ones or big ones; whatever the age they are,  teach them that never giving up on a task is what will help them eventually achieve it. Without failure we would not know success and sometimes all we need is that little “push” of someone believing that we CAN!  In honor of DS Awareness month, I have created a YouTube channel and it went live two days ago. I hope you will all go take a peek and be inspired to never give up on YOUR blessing. Until next time… <hugs> ~Shelley~

For those of you who know me already… my apologies to you for being a ghost of sorts for a while, and for those of you who don’t know me… welcome to my blog. I invite you to look at my past posts to get to know me and my journey with D.S. thus far. I have been up to my eyeballs with life and just have not made blogging a priority on my list of “things to do”. However, with some downtime today I figured I would catch everyone up to speed with what is happening since Abrielle (French origin meaning God is my strength) was born seven months ago… after all, my last blog was when I was still anxiously awaiting her arrival.

I shared early on that I considered my unborn child with D.S. a blessing from the start… mostly because of my faith in God. I know that I am given only what He knows I can handle and I trusted that Abrielle would be no less than amazing, and man was I right. Now I admit, I have had a better experience so far than some, but with that being said, we are all different. Every child with D.S. is different and the unique experiences we all have are simply that. Not every case is the same just like life is not the same for two people following even the same path, life is life and it twists and turns in crazy directions at many given moments… you just have to be ready for those right? They WILL happen, they may seem unexpected, but they are always expected so anticipate moments of adversity and be ready for when your strength is tested.

Abrielle is my 4th child, coming only 13 months after her older brother Zane… she was a month early and tiny tiny… 4 lbs 6 oz, she is my little peanut! By the grace of God, she was born healthy, with no major issues. She had a small ASD (atrial septal defect) however that was more likely caused by her premature birth, NOT the D.S. I am very happy to say that by her 3 month cardiology check up it already begun to close, being then called a PFO and at her 6 month cardiology check up, it is completely closed. Bye bye cardiologist, no more follow ups needed! Yay! Abrielle has an early interventionist that comes to our home once a month to do developmental evaluations as well and she is doing great so far!! No therapies have been put in place, which is great news! She has an amazing personality so far, she IS special as they say about kids with D.S, her smile and sweet temperament warms my heart. She giggles and coos and makes all kinds of noise if she want my attention or the attention of others around, she is simply a joy and an amazing little girl so far. The thought crossed my mind that people actually give this up by not  taking the chance and well, knowing what I have in her , I am so glad my choice was never a second thought. To have deprived the world of this little girl would have been an injustice! I have learned a very important thing I would like to share with you about our children, sop please take a moment to read what I have to say next although long, it is so important to our children and their success more than anything I could say.

As parents, we are very sensitive to our children and their needs, and we will defend their short comings till the bitter end. Being a Mom of an 8 year child with diagnosed ADHD (diagnosed by a Neurologist) who I choose NOT to medicate, I feel that when you have a child with special needs, you are only doing them an injustice by accepting that their “ailment” or “disability” will give them an excuse to do less than others. I have great expectations for ALL of my kids, I expect the best from them… despite their challenges. Adversity is presented so that we may strengthen and overcome it with excellence and I truly believe that children with D.S. can do ANYTHIHNG we encourage them to do. I knew that “Brie” needed to be doing certain things by the age of 6 months, so I worked with her and encouraged her little mind that she could do it! And guess what? She did! She is meeting milestones that even I deep down may not have expected but with a little push of encouragement and hope from me, and the nanny that cares for her while I am working… she is excelling! WOO HOO! You only get in life what you accept, so accept nothing more than greatness and teach them how to be great. I am sharing an email I got recently… I warn you to get out the tissues, but realize that our kids can be anything we help them become! Don’t allow the word “disability” to rule you and your child’s lives. Do you really want to believe that your child is unable to do anything? If we relinquish ourselves and their abilities to the term “disability” are we setting them up for failure? How about saying “MY CHILD IS ABLE” as long as they have the encouragement they need and deserve and see what happens… what do we have to lose? You can only begin to change society’s mind by changing the way they treat our children. Our children ARE ABLE not DIS-ABLE!  Read this story below for encouragement!!! It’s simply awesome!

Shelley~

At a fund-raising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question, “When not interfered with outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?” The audience was stilled by the query.

The father continued. “I believe that when a child like Shay, who is mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.”

Then he told the following story:

Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, ‘Do you think they’ll let me play?’ I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, “We’re losing by six runs and the game is in the eighth inning. I guess he can be on our team and we’ll try to put him in to bat in the ninth inning.”

Shay struggled over to the team’s bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted.

In the bottom of the eighth inning, Shay’s team scored a few runs but was still behind by three.

In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands.

In the bottom of the ninth inning, Shay’s team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.

At this juncture, do they let Shay bat and give away their chance to win the game?

Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn’t even know how to hold the bat properly, much less connect with the ball. However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay’s life, moved in a few steps to lob the ball in softly so Shay could at least make contact.

The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher. The game would now be over.

The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game. Instead, the pitcher threw the ball right over the first baseman’s head, out of reach of all team mates.

Everyone from the stands and both teams started yelling, ‘Shay, run to first!
Run to first!’Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled.

Everyone yelled, ‘Run to second, run to second!’Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball, the smallest guy on their team who now had his first chance to be the hero for his team.

He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher’s intentions so he, too, intentionally threw the ball high and far over the third-baseman’s head.

Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home. All were screaming, ‘Shay, Shay, Shay, all the Way Shay’

Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, ‘Run to third! Shay,run to third!’
As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, ‘Shay, run home! Run home!’Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team

“That day”, said the father softly with tears now rolling down his face, “the boys from both teams helped bring a piece of true love and humanity into this world”.

“Shay didn’t make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, as well as coming home and seeing his Mother tearfully embrace her little hero of the day!

In closing to this blog entry, I want to say this… “We are not who we are, we are not even who we think we are… we ARE who other people think we are.” I hope you enjoyed this as much I as I enjoyed sharing it!

As I read a news article sent to me by a friend yesterday (enclosed below), tears rolled down my face realizing the fight that people like us used to face. I am so thankful that there were people that fought for the rights of these precious children born into the world. I remember how I felt the day the doctor asked me if I planned to terminate if I in deed found  the baby girl I was carrying had Down syndrome. I recall just staring at him saying, I just saw my daughter sucking her thumb in the ultrasound… that’s not even an option. It seemed so second nature to him, and it was like he assumed that was my plan of action. He almost smiled when I said “not an option”. It was only when I began researching that I found that 8O% of the people who find out during pregnancy that their child will have DS terminate,  and I have to say I was astounded by that statistic, as it never even crossed my mind. Now I know that I am not typical, I understand that a lot of people feel victimized, not that I understand it, but I realize it is the normal initial reaction.

I am not sharing political views nor am I judging anyone who had these thoughts, but I must say I was saddened to know that that many people don’t take the chance of having these children. My daughter with DS is still 2 and a half months from being born into this world and  I am SO excited and anxious for her arrival. I have looked through various photos of your children and they are such beautiful, happy, spirited children. How lucky they are and how envious I find myself becoming of their innocence,  their ability to live without judgement, fear and hate, their ability to simply just live and love every moment. I am already a pioneer for my unborrn child, standing up when someone says they are “sorry” that my child will be born this way, I know they don’t mean anything but compassion… but it’s amazing how defensive I have already become. My comeback is always, “don’t be,  I look at this as a blessing, it’s part of my plan, I was chosen for this. It’s a nice way of making them think. What I really want to say is, well I am sorry that you feel that way…. but of course I hold my tongue. One friend actually responded to my blessing comment saying, “yeah but it makes it so hard” and I wanted to say, really you know that first hand? And by the way, what child is not HARD??? Wow, it’s amazing how much people know about something they have never encountered isn’t it? Okay done venting … HA HA

I just wanted to share this article and say THANKS to all of you for bringing these beautiful, amazingly inspiring kids into this world, you all are pioneers as far as I am concerned, even if you did not know beforehand as I do, you took it on, faced and embraced it,  and your reward is a beautiful child. You all have the amazing ability to persevere and climb when most would turn back. Our fight must go on for them!

~Shelley~ (scroll down for the article)

_____________________________________________________________

ARTICLE FROM ST PETE TIMES _________________________________________________________

When the baby arrived, the pediatrician wouldn’t say anything to Naola Rubens. He just presented her with papers to sign the child over to an institution.

Rubens’ daughter, Lori, had Down syndrome.

It was 1961. The most a parent could expect for such a child was a life of full-time hospital care. Rubens decided she would try for more.

“I said, ‘She’s my child,’ ” said Rubens, now 87 and living in Dunedin, FL “and from there we just raised her as one of three children.”

Soon she got help from an unexpected source. In 1968, Eunice Kennedy Shriver created the Special Olympics, helping society see new possibilities for the lives of the mentally disabled.

Shriver, who died Tuesday at 88, is being remembered for giving opportunities to people who once lived in the dark shadows of society.

Lori Rubens was a Special Olympian, participating in bowling, tennis and track and field.

“She had a lot of advantages, I’ll tell you,” her mother said. “I just think she was born at the right time.”

• • •

For 150 years, children with mental disabilities — referred to in the 1800s as imbeciles and idiots — were taken from their parents and sent to institutions.

In the 1950s and ’60s, some parents began to reject this option.

“I’ve thought about this so often. Who were these families who made these decisions initially?” said Madeleine Will, vice president of public policy for the National Down Syndrome Society. “They were choosing not to institutionalize their children at a time when there was no support and even confronting rejection and hostility.”

Among the pioneers were Bert and Jean Muller. In 1958, they had a mentally disabled daughter named Leslie. Muller, who owned an insurance agency, visited his doctor, his priest, his psychiatrist, even his lawyer seeking information on how to care for his daughter.

None had answers for him.

“Nothing was available for someone who wanted to help a mentally retarded child,” said Muller, now 82. “So I sold my business. I could see I had a full-time job ahead of me.”

Muller and his wife learned of a day program in Pinellas Park. About eight children were there the day Muller’s daughter arrived.

Muller became one of its most vocal supporters, eventually heading the organization now known as PARC. The acronym stands for Pinellas Association for Retarded Children, but today the organization steers away from the use of the word “retarded.”

“An awareness was just beginning,” Muller said, “and the most important thing that happened was the election of John F. Kennedy to the presidency because he had a sister who was mentally retarded.”

Complaints had surfaced of abuse and mistreatment in mental institutions. Kennedy assembled a committee of experts to come up with answers. And people began to realize that with education and training, children with mental disabilities could realize their potential.

Then in 1968, Shriver, Kennedy’s sister, organized the first Special Olympics at Soldier Field in Chicago. At the opening ceremony, she delivered the athlete’s oath: “Let me win. But if I cannot win, let me be brave in the attempt.”

The event introduced another message to the world.

“This was a population that was not spoken about in our society,” said Will, of the National Down Syndrome Society. “So the fact that there was a message about them and their capabilities in terms of athletics was very powerful. It conveyed the message that these individuals were more alike than different.”

Soon, more money was set aside for programs to help the mentally disabled. Legal action forced school districts to provide educational opportunities. The mentally disabled moved into group homes, where their families could keep a closer eye.

Some got jobs. Others got married.

Rubens’ daughter, Lori, is now 48 and lives in a house in Dunedin with two other mentally disabled women and an aide. Retired from her job at PARC, she spends her days going on day trips, walking, watching the news.

PARC now has a 12-acre campus with a spa, a travel agency, bank, senior center and jewelry store. It serves about 700 people a day.

Muller’s daughter, Leslie, now 50, lives in apartments at PARC. She gets up every morning and goes to work there, putting together packages.

“Today she’s happy, she smiles and she knows she’s going to see us every Sunday,” Muller said.

• • •

Society still has a long way to go, said Dr. Brian Skotko, a fellow in genetics at Children’s Hospital Boston. Many families endure long waits for help from the government and community organizations; disabled people are still housed in institutions; popular movies still disparagingly use what Skotko called “the R word.”

“Not all of the ghosts have left the banquet table,” he said.

New medical technology is raising questions about the future. Soon, Skotko said, women in their first trimester of pregnancy will be able to learn through a blood test whether they are carrying a Down syndrome child.

Today, one in 733 babies is born with the condition, Skotko said. The new blood test will likely mean fewer Down syndrome babies will be carried to term. Skotko wondered, “Will babies with Down syndrome slowly disappear?”

The National Down Syndrome Society, of which Skotko is a board member, takes no position on what women should do if they learn they are carrying a Down syndrome child. Skotko said the organization is focused on making sure women get the facts because research shows the information they get is often inaccurate or offensive.

“We all owe it to Eunice Kennedy Shriver to continue to fight for the justice and acceptance that all people deserve whether or not you have a disability,” he said.

Leonora LaPeter Anton can be reached at lapeter@sptimes.com or (727) 893-8640. Times staff writer Mike Wilson and researcher Carolyn Edds contributed to this report.

I am very happy that the Fetal Echocardiogram performed last week came back with great results. It looks like our little angel has a healthy heart. This was my biggest fear, so I am relieved   I am curious however if anyone knows that when the nasal bones are present and normal if that is an indication that the respiratory issues commonly associated with Down syndrome will not be an issue. I am also curious if finding no pockets of fluid  in the brain and the neck measuring of normal thickness is a good sign and what it may or may not indicate? I have my next appointment with the high risk Dr’s in a few weeks and will ask then but if anyone has any info I would greatly apreciate the input.