Monday, March 31, 2008

our weekend

What a CRAZY busy weekend we had. We went to Build A Bear Friday, Soring fair Staurday, then a kids concert are back to school and I need to get to work, but wanted to share this short montage. Ciarra got chosen to go onstage for the Rick Charrette concert. She was So funny. She watches way too much Barney, she came out blwoing kisses and waving her arms, grinning from ear to ear. I was really proud of her, she did the hand movements right and was so well-behaved. She bowed and curtsied at the end, waved and blew kisses to her fans (me, Wendy and Hunter & Amara lol) She LOVES the stage. Busy weekend, but so fun, and she is so happy lately. I just love this smiley kid.

Wednesday, March 26, 2008

Wordless Wednesday

oops...adding a few words: these photos were taken not by me, but by a very nice young lady named Rebekah Rhodes. I was trying to be wordless, and should have acknowledged she took them.

Friday, March 21, 2008

wow..It's here already!

The laptop has already arrived!!

Kristin brought it in, and helped Ciarra open it. Oh BOY was she excited!!

they opened it together...

one EXCITED little girl. No school today, teacher inservice about TIMING!

We won.

thanks so much to everyone who voted. Uncle Ronnie, Ciarra says I love you back. Thanks to eveyone who voted for her, and all the incredible comments that were made. It was humbling and so touching to read them. I wish there were enough laptops to give every family there, though. And my heart aches for the little girl with cancer. I voted for her, truth be told. There is NEED, and then there is NEED, kwim? I am sending prayers for her.

The vote ended up being very close. 43 to 45. That means every single one who voted REALLY mattered. Thanks for taking time out of your busy lives to vote for C. The laptop should arrive today. I promise to post pics!!

Wednesday, March 19, 2008

THIS is what we want.

dang. Tissue alert.


Every parent of a child with a disability should read this.

Unlimited potential.

Some people might see this and think "So?" So what, she is a mail deliverer. She isn't an executive. What she ALSO isnt is...unemployed. She isnt...unhappy. She a job she hates. She isnt...on welfare. She isnt...negative and angry.

She is making it. She is working in a job in which she takes great pride, one she enjoys. It probably pays pretty well, and Im guessing the benefits are better than any *I* have ever had. She understands her work, knows her contribution matters. She LIKES it. Isnt that all ANY of us really want?

So, if my kid grows up and works at McDonalds, or bags groceries...will she be "less than"? Do you ever eat at McDonalds? Do you bag your own groceries? The point is, our kids can dream big, they CAN succeed in the bigger world. They CAN have jobs that fulfill them. WE are the catalyst. Raise them to believe they can be just like Joy in the video above. Then get out there and MAKE it happen.

Monday, March 17, 2008

Can you spare a minute to VOTE for my girl?

we are story number 5...Im So excited!! This little computer could go back and forth to school SO easily with Ciarra. Please vote! Even if not for us, there are 4 other very deserving families there. Sincerely, Michelle and Ciarra

Thursday, March 13, 2008

Monday, March 10, 2008

my daughter is PERFECT just like God made her

The parents of a girl with Down syndrome have caused a public outcry in the U.K. by subjecting their daughter to cosmetic surgery to improve her appearance.

Georgia Bussey underwent "radical and painful" cosmetic surgery three times by age 5 so she could "fit in" with her peers, the U.K.'s Daily Mail reported Sunday.

Parents of another girl with Down syndrome told the paper that they were also considering altering her appearance in the future so she could be more "accepted.”

Critics in the U.K. slammed the parents, with some even claiming the procedures were tantamount to child abuse. However, the parents hit back, saying that no one complained when "normal" children had their ears pinned back.

"Why should it be any different for a Downs child?" asked Georgia’s mother Kim Bussey.

Bussey said she and her husband David were motivated by love for their child and deliberated for a year before putting her through the ordeal.

In the first procedure, Georgia's tongue was reduced to stop it from protruding, according to the paper. Then folds of skin were removed from the inner corners of her eyes to take away the "slantiness characteristic" of Down syndrome. Finally, she had surgery to stop her ears from sticking out.

Bussey said society often judges people on the way they look.
"Society is not going to change overnight – so Georgia has to fit into society, rather than society fitting into the way she is," she said.

Another couple, Laurence and Chelsea Kirwan, told the newspaper they were considering surgical procedures for their two-year-old Down syndrome daughter, Ophelia.

Dr. Laurence Kirwan, a world-renowned plastic surgeon with offices in the U.K. and Connecticut, said they would make that decision if Ophelia reached the age of 18 and was being unfairly judged on how she looked.

The mother of a Down's syndrome baby who put her daughter through three painful operations to improve her appearance has denied acting out of vanity.
The Down's Syndrome Association, while not criticising the couple directly, said it was worried about the sort of message sent by their actions

Kim Gallagher: "I didn't do it to make her look prettier, just to give her a more subtle look."
Kim Gallagher and her husband David said they simply wanted what was best for their daughter Georgia and were worried about her being teased at school.

The little girl's story is told in an ITV documentary, Changing Faces, being screened next Tuesday.

Ms Gallagher, 36, said she agonised for a year before deciding to go ahead with the cosmetic surgery on five-year-old Georgia.

The three operations involved:

Her tongue being shortened to stop it protruding.

Folds of skin being removed from her eyelids to reduce the "Mongoloid" appearance traditional associated with Down's syndrome.

Pinning her ears back to prevent them from sticking out.
The couple, who live in affluent Pimlico in central London, say the operations have not been purely cosmetic and point out that Georgia's speech and breathing have improved.

Was in denial after birth

Ms Gallagher, who says she had trouble accepting Georgia when she was first born and did not want to see her, says she wants to protect her daughter from teasing and taunts when she gets older.

She told the Daily Mail: "We live in a society that judges people by the way they look.

"Society is not going to change overnight so Georgia has to fit into society rather than society fitting into the way she is."

Ms Gallagher said some doctors had resisted her attempts to change her daughter's appearance but others had been very "positive".

Further operations a possibility

She said her daughter had not actually been taunted by other children but said she believed it might have happened later in childhood.

As for further cosmetic surgery, she says they are not ruling it out.

Carol Boyes from the Down's Syndrome Association: "We don't believe Down's children suffer."
The Down's Syndrome Association, which champions the rights of people with Down's syndrome, says it fully supports the right of adults to choose plastic surgery.

'Why hide her condition?'

But Carol Boyes, director of the association, said: "We are very sad that they feel the need to change their faces in an attempt to hide the fact that they have Down's syndrome.

"While we will always support them, we do question why parents decide to subject their young children to cosmetic surgery with all the discomfort and risk that any form of surgery entails.

"What message are parents giving to their child in showing that they would like to hide their child's disability?"

Ms Boyes said: "Society must learn to accept people with Down's syndrome for what they are - people who happen to have Down's syndrome. Giving in to prejudice and ignorance by hiding the outward signs of the disability is no solution." another kid

Saturday, March 08, 2008

Tubing Friday night

Here is the beginning of my post. And here is the rest of it.

Thursday, March 06, 2008

Carson inspires me

check him out!

Alzheimers and Down syndrome-what they share

I think I may be the odd man out in the world, BUT...I have long thought there is a strong connection between DS/AD and autism. I also have a very strong feeling that knowing this will have an impact on how th world views DS, philosophically. I believe with everything in me we are killing off the very people who hold the answers to some of lifes biggest questions...cancer, AD, autism...

Sunday, March 02, 2008

Children's Museum

we went to the Children's Museum today. Ciarra asked if Jade could come, so I said yes. We met up with some new friends of ours, too. In October, I got a call from a lady who saw on on tv doing promo stuff for the Buddy Walk. She has a daughter with DS who is 8. She thought our girls would hit it off. I didnt even know another little girl with DS lived near us! YAY! (She lives about 45 minutes away, but thats near around here!)
Anyway, the girls did hit it off. And we have done things 2 weeks in a row with them now. Her name is Kirsten, and she is SO cute. Her speech is just incredible, and talking with her is very easy. She and Ciarra both LOVE to play Doctors and sing songs and laugh and be silly. We have found a new friend, and I have a feeling it will be for life.

Saturday, March 01, 2008

where Down Syndrome starts and ends

I am a member of more than a few Down syndrome specific sites. I routinely attend the yearly DS Conferences. I know a fair bit about statistics, different kinds of DS, health issues specific to "our kids", etc. In fact, it is rare a day goes by that I dont find myself speaking or typing the words "down syndrome". And yet, DS is such a minor part of who my daughter is in my thinking. I rarely look at her and think "oh, that is because of DS". I dont equate her successes and failures with the number of chromosomes she packs. Even so, I am aware of her genetic makeup deep in my bones, it is there even when it is not in the forefront of my thoughts.

Somehow, I have been able to raise her to be a young lady who happens to be really cute, funny, charming, a bit moody, a third grader, a great reader, a pretty good baseball player, an aspiring artist...who happens to have a little something extra in her genes. In a weird way, DS is everything, and DS is nothing. It colors most of my thinking about her and her future, and still manages to be at the end of a long line of things I think about when I think about her.

It is almost as though the DS is the last hurdle we jump in all cases of trying to give her the life of a normal little girl. Usually, it is along the lines of "How can we make a world that has her pegged as 'that Down syndrome kid' see who she really is. We think about the future, and the many ways she breaks the mold. She is not a superstar, I dont think. She talks fairly well, she is academically holding her own. But she is just a kid, just a kid with DS. As every other kid in the world, some will do more and better things, and some will do fewer. She is not that different than any other kid, making her way. Except that there are some ways that DS does impact her, whether they are physical or cognitive things, or barriers thrown up by the world. And except for the fact that when we sign her up for various things, there is the requisite "oh, by the way...she has Down syndrome". And there is the inevitable long, searching look, as whoever has just received that news gathers their response. Most of the time, it is a positive response, and questions come quickly about how they can make things smoother for her, what accomodations she will need. Every once in awhile, you get a reaction that tells you this might not be a great idea.

People are either very willing to tackle it or they arent. I am not naive enough to believe that having Ciarra on a team or in a group poses no unique challenges. I am fully aware, for instance, that she is generally smaller and less strong. She is not ever going to be the hardest hitter or the fastest runner. There are times I bargain with myself, remembering the big hit she got last year in baseball, the rush of emotion when her teammates came outside the dugout to give her five, in a line of acceptance and respect that seemed improbablte for their ages. Here is that video, in case you missed it.

The time is coming fast for us that we must again find a way to make the DS take a backseat to the little girl growing up in our home. Ciarra is approaching puberty...and fast. Once again, who she is, and how she is impacted by DS comes to the forefront. Do we approach this as we would any other little girl? We have had some of "the talk". She understands at an age (and development) appropriate level. And yet, emotionally, she is so young still. One of the incongruities of DS is that physical age and mental age and emotional age are all so varied. Academically, Ciarra is kicking butt. She is doing wonderful things. Mentally, she is very self-sufficient and capable. Developmentally, emotionally...she is young. Naive, innocent, guileless, trusting, unsuspecting, even un-sophisticated. Maybe every other word in the thesaurus there is about being completely too young and unprepared for this momentous undertaking. She is just a baby, I want to scream. God allows her to have the mind of innocense in so many ways, she does not yet even lie. And she will have to deal with having a period, changing pads, wearing a bra all the time. It seems unfair. And too, it seems that I want it both ways. Either she is a typical little kid and therefore she has to accept it all, the good and the bad, of life, or she is not. She is. I dont give her easy outs. I dont allow her to take the easy road. I push her to be her best, and here I am trying to find some way to let her out of this entryway to womanhood. Woman? She is only 9. :(

I guess the truth is that I am scared. Will I have what it takes to teach her to take care of herself, but even more to love herself, as she becomes a woman? Will she hate having her period (I do!) Will she understand all of the emotions and physical effects she faces? will she be moody and cry easily? Where does DS start and end? How does it affect her as she matures? The truth is, facing puberty in my daughter with Down syndrome means I have to face the biggie, the one issue that has ever made me cry. How do I explain to this darling little girl that having your period means your body is trying to make way for a baby...when having a baby and having DS are incongruent at best? The one thing I have ever cried over is that she likely will not have babies. Should she? Will she? She is old enough now that she has me trained. I dont get to decide. She is in charge. But Down syndrome is clearly a big part of the equation.

Kids with Ds stand a much higher chance of being sexually abused, especially those who are mildly affected. There is the issue of sexuality. There are so many questions...are boys with Ds really sterile? Should we be steering her towards loving those with DS, "those like her"? My heart, and my gut scream no. She gets to choose. Ds doesnt win this round. And yet..there it is. If she did have a baby, the chances of her having a baby who also has DS are 35-50%. Is that fair? is there anything wrong with having a baby with DS? Is that in itself making a judgement on her? I wonder if I had a crystal ball, would I use it? Or would I allow life to unfold in all of its beauty and tragedy and allow the details to reveal themselves to me in the time and place God intends? Sometimes, I just want to know. Will all of this work out? Will scientists find a way to ameliorate the effects of DS on our children's brains, and let them live more normal lives and make these decisions without all of our handwringing and worry? If the magic pill came tomorrow, would she have had enough real world experiences to live a life of "normal" and not be destroyed by it? do I even want her to be anything but the unique and precious little person she is?

You see, puberty brings so many questions. And Down syndrome is a part of most of the answers. Like it or not, there is no removing it from the picture. She can be as normal a kid as she is, living her normal little life in her normal little world, and then there it is...looming. Down syndrome. How will it affect this time in her life? How will she be affected as a woman, when the time comes to decide about children? will I ever be strong enough to say to this darling and loving child..."Honey, maybe you shouldnt have a baby..."? If the answer is that I HAVE to, then why should either of us have to be drug through this playacting of the mundane, this tease of normalcy, this promise of the future that probably will never be? Just for today, I want to scream out loud..."Down syndrome isnt fair, God."

Q. Do girls with Down syndrome have normal menstrual periods?

A. Menstruation for girls with Down syndrome is no different than for their peers in the general population. On the average, they begin menstruating at age 12 1/2, but may begin as early as age 10 or as late as age 14. Most girls with Down syndrome have regular cycles with the same minor irregularities typical of their peer group.

Alterations in a previously regular cycle may be due to the normal process of aging, or may be a sign of emerging hyperthyroidism. Ongoing irregularity of menstrual cycle warrants medical examination.

The Tanner stages (also known as the Tanner scale) are stages of physical development in children, adolescents and adults. The stages define physical measurements of development based on external primary and secondary sex characteristics, such as the size of the breasts, genitalia, and development of pubic hair.

Due to natural variation, individuals pass through the Tanner stages at different rates, depending in particular on the timing of puberty.

In HIV treatment, Tanner staging is used to determine which treatment regimen to follow (adult, adolescent, or pediatric).

The Tanner stages were first identified by James Mourilyan Tanner and thus bear his name.

Definitions of stages
Adapted from text by Lawrence Neinstein, MD.[1]

Pubic hair (both male and female)
Tanner I
no pubic hair at all (prepubertal state) [typically age 10 and under]
Tanner II
small amount of long, downy hair with slight pigmentation at the base of the penis and scrotum (males) or on the labia majora (females) [10–11]
Tanner III
hair becomes more coarse and curly, and begins to extend laterally [12–14]
Tanner IV
adult-like hair quality, extending across pubis but sparing medial thighs [13–15]
Tanner V
hair extends to medial surface of the thighs [16+]

Genitals (male)
Tanner I
prepubertal (testicular volume less than 1.5 ml; small penis of 3 cm or less)
Tanner II
testicular volume between 1.6 and 6 ml; skin on scrotum thins, reddens and enlarges; penis length unchanged
Tanner III
testicular volume between 6 and 12 ml; scrotum enlarges further; penis begins to lengthen to about 6 cm
Tanner IV
testicular volume between 12 and 20 ml; scrotum enlarges further and darkens; penis increases in length to 10 cm and circumference
Tanner V
testicular volume greater than 20 ml; adult scrotum and penis of 15 cm in length

Breasts (female)
Tanner I
no glandular tissue; areola follows the skin contours of the chest (prepubertal)
Tanner II
breast bud forms, with small area of surrounding glandular tissue; areola begins to widen
Tanner III
breast begins to become more elevated, and extends beyond the borders of the areola, which continues to widen but remains in contour with surrounding breast
Tanner IV
increased breast size and elevation; areola and papilla form a secondary mound projecting from the contour of the surrounding breast
Tanner V
breast reaches final adult size; areola returns to contour of the surrounding breast, with a projecting central papilla.