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.

Make video montages at www.OneTrueMedia.com

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.

Life lessons

Jim and I had a date last night, we went out for dinner and also checked out the casino. Neither of us are big on gambling, but every year or so, we take a ride and give it a whirl. We generally have NO clue what we are doing, just push the button, pull the handle...hope to hear bells and whistles go off. (For the record...no bells no whistles.) Kristin watched Jesse & Ciarra while we were gone, which was very nice. She is 19 today, grown up into a very intelligent and funny young lady.

Kristin's friend Davey came over to hang out, too, he and Jesse play Guitar Hero till their fingers hurt. Ciarra is pretty independent, she usually watches movies or colors, or plays PS2 in her room. Last night, she was snuggled up with Davey on the couch watching Titanic with them. We got home towards the end of the movie, were Rose uses an axe to free Jack from the pole. I watched her watch that, cringed a little (we dont shelter her, we just..dont....expose her to grownup moveis much..ok maybe we shelter her a little, shes awfully innocent yet) She took the axe part fine, and I watched her watching the movie, kind of curious how she would handle it. It isnt brutal, graphic, or bloody. But there is a lot of death, a lot of high emotion. How would she handle it?

She was fine till the very end of the movie. She asked a few questions, why did that big boat break apart? Did all the people who fell off it die? But those people were nameless, faceless. She seemed to be rooting for Jack and Rose. When the had gone under with the ship, she excitedly called out "Jack! Come up, Rose is right there." She was relieved to see him pop up. She said "good" when Jack put Rose on the board and held her hands. But she got increasingly worried as their faces turned blue and Jack started shaking uncontrollably. I looked at her, and saw tears welling in her eyes. She asked me "Is that real, Mom?" How do you explain that those are actors, but that the story is real, and that many real people died that day? She was very sad, but you could tell she was still intently watching to see the heroe make it through. In Ciarra's world, the good guys always win. Zack and Cody always find a way out of trouble, SpongeBob & Patrick make it through their misadventures. They all live happily ever after in the stories she knows. But not in this one, and this one is so real that it made her think about her own life, her own loves, and losing them.




As Jack slipped under water, she said "Mom, why is Jack falling under the water?" I explained that he was too cold to hold on, and she told me that "Rose should not let go of his hands." I had to explain that Rose let go because Jack had died, and she needed to save herself. Ciarra turned back to watch and snuggled in a little tighter, grabbing my hand and gripping it hard. :( She asked me if Jack would go to Heaven when he died, and I told her yes. I told her that everyone goes to Hevaen someday, that we see the people we love again after we die. She said that her family was not going to die, not ever. I told her gently that everybody dies, that as long as we believed, we would be together again. She looked up at me with big tears streaking her face. And then quietly turned back to the movie.




Rose was old now, and talking to some folks about jack, the boat sinking, and her life. Ciarra had a hard time understanding that that really WAS Rose, and that she was old now. More questions. Why was Rose old, why was she a grandma now (Grandma being anyone who is old and gray) I told her that everyone gets older, that I would be old and a Grandma someday too. Bad answer, Mom. She burst out crying, and told me "No, you stay my mom, forever, you stay you here with me". I guess I am a bad mom, cause I lied to my girl, I told her I would stay this way forever, and be her mom, and not get old. I did explain that she is the same girl she was when she was a baby, just older. She said no, she was not getting old, either, she was going to stay just Ciarra. I knew that this movie was too much for her, too grown up and way too full of loss. When Rose died in her room, I told Ciarra that she was going to Heaven, and that Jack would be there, and they would be happy together again. I have never really paid attention to this movie before, but I was relieved to see them show a youthful Rose running into Jack's arms surrounded by all of the Titanic passengers. It was enough to stop the tears and quell the questions. But still, she clung to my hand, kissed my cheek, and told me that "we arent going to get old, are we mum?" We can talk about that another time, baby girl.

"High-Functioning"

I had a BIG debate the other day on the DSTNI list. The DOCTOR that runs the list actually told a worried new mom that "kids with DS are not on a par with normal kids". WHAT!? I was so angry to hear that.

Inevitably, I mentioned the things Ciarra can do that ARE "on a par" (While pointing out what "on par" means...it means equal, as valuable) People take offense everytime someone points out the things that they themeselves will say are "high-functioning" in the next sentence. It is difficult to give hope to a new mom being told that her baby CANT or WONT do things and not give specific examples. And then be seen as a braggart. Sometimes, I feel ostracized with the DS community, because I am "not allowed" to brag about the things I am excited about. I have learned to not talk so much about the things she is doing and focus instead on ability in general.

I absolutely fight for the rights of all kids with DS, but if we are going to be fair, as a community, we need to start seeing ourselves as we seek out "high-functioning" role models. We ALL want to share every high-functioning story we read, from Karen Gaffney to Sujeet & Carrie. They give us hope. I was saying in my back and forth with the doc, basically, if we are going to, as a community, continue to point out gleefully the ones who are highly successful and put them on pedestals, then we better be prepared to have some intellectual honesty regarding our OWN issues. We cant tell the world that it doesnt matter until we, ourselves, stop making it seem that the "cream of the crop" are somehow DIFFERENT than our OWN kids. Yes, we aspire for the best for them all. Yes, some will find their ways more easily. YES, we need those role models. Any of us that have ever blogged or written about or posted a story about a person who has done something the rest of the world would be surprised by are JUST as responsible for this.

I talk about my daughter's ability. If she were working on potty training at 9, you can bet I would be bragging when she got that, too. Im happy for her when she gets stuff, we all are. I dont much care what things she is doing, just that she is doing them. Im proud of her. I have heard the term high-functioning SO many times. I have USED the term myself. You will NEVER catch me saying or thinking "low-functioning", because it is abhorrant. But in the eyes of the world, we use labels. Ciarra is "high-functioning" and thats ok with me. I know that gives people hope sometimes. But it doesnt mean that I or ANY other person sees her as more valuable. She is NOT. Cindy and I have had this discussion so many times, and I wish more people could see it without all the crap that inevitably comes along. The truth of my child is what it is, the truth of HER child is what it is. They bring different things to the table, they are valuable in SO many ways. Ciarra might be the one doing the talking someday, but you can bet your butt she will be thinking about the gentleness and heroics of the Noahs that dont have the same voice. ALL of our kids bring something to the table. In our rush to use the right words and not offend anyone, we are talking out both sides of our mouths, often. We CANNOT be so quick to point out the "superstars" and then chastise someone for wanting to see that in their own kid. If we dont admit that we hope and pray for it for them, we are full of poop. If we make people who do talk about the things their kids do, even when those things are deemed "high-functioning" then we have our own prejudices to deal with. I hope this makes any sense at all. It is very hard to articulate well.

All I want is to not feel like somehow we dont fit the DS mold. My dd has DS, regardless of where on the spectrum she falls, her abilities and disabilities should not define her. There is no magic *I* performed to make my daughter do the things she does. There was no magic pill, no therapy, she was born with a certain ability to dodge some of the big DS issues. It was not me trying harder that made her this way. Although, I completely believe it was in large part that I didnt hold her back and believed in her that those God-given abilities shined through. She was lucky, her heart healed itself. No gastro issues. Poor vision and chronic sinus crap, but otherwise very healthy. I dont use the term "lucky" because that implies otheres werent lucky. She is who she is.

I think if we are going to talk about accepting people for who they are, then that means the ones on both ends of the spectrum. I love my friends kids who are less able to make their way in the world. Not because of DS, but because they are people. I dont define them by what they can do. I am thrilled mine can do what she does. But it doesnt define her. It just hurts when people discount it in so many ways, either by saying it cant be done or she must have a "mild case" of DS. She is precious to me for so many reasons, not the least of which is the many ways she teaches me about my own prejudices. Blanket statements dont apply to ANY of our kids. All I want is for my own child to be seen for who she is, and that is not dictated by her number of chromosomes.

It is better than ok.

you know how you look at your little kid with DS and you have this fear sometimes, what will the future be like? Will he still be cute? Will people still love her? What will life be like?
Let me just tell you. I sat watching Ciarra get ready for the bus this morning and remembered all those worries and wonders I had back then, and I thought about all the new kids coming along. And I felt this sense of peace. Its OKAY. Its really really really ok. She is happy, she is thriving, she is precious and gentle and loving. She is everything a child should be, with some added bonus tracks. Sure, there are things that are different than I would have imagined them to be when I made my wish list. But there are so many things that came extra that I dont dare to even imagine more. Our lives are normal. She waits for the bus by the window in the morning, talking about her day, about vacation coming soon, telling me she would rather go to Florida today (we are going in 3 weeks) and asking about after school.

She slurps down her cereal, kisses the dog, snuggles with the cat, reminds me to kiss her brother (I already did, but she makes sure I do it again for good measure.) She runs her bowl to the sink, then flies back to peek out the window again, and she is caught in a puddle of sunshine, and my heart is just in my throat. She is beautiful, in my eyes, so beautiful she makes my heart stop.


And she is big now, though still little. But plenty big that Im not afraid anymore of her future. [i]She[/i] makes it, and I just guide it along. And she is [i]capable[/i]. And she is funny, and sweet, and endearing. And stubborn, and bright, and undeniably maturing. And I love this child exactly like she is, every detail of her face, especially the ones that come from having DS. They are like a badge of honor to me, those precious Brushfields spots that make her eyes shine, the soft slant of the eyes that once looked so foreign to me now seem so incredibly indelibly a part of her. DS doesnt define her, it just adds to her beauty. And she is going to be ok in this world, because she has this amazing little heart that leads the way, this fight and determination to be everything she can be. And she has taught me that that is more than "enough" it is plenty. It is an embarrasment of riches. I am looking at this half grown little girl and wondering what did I ever fear? Certainly not her. What I feared was change, what I feared was my own inadequacies. What I feared was that I might not be a good enough person to handle this...thing. And this thing has changed me and made me stronger. And it has made me see that she is perfect in every way, exactly as God made her. And lucky me, shes mine.

Sometimes it is painful to watch her grow up and move away from me, in tiny baby steps. But it is part of the journey I think, to be taken from one extreme to another and be ok with it. I just thought maybe some of you new parents might like to know. Our life is good. It really is going to be ok.