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.


Shannon @ Gabi's World said...

Hey Michelle!

I was on Downsyn today and seen a post of yours. I followed the link that said Meet Cierra or something like that. What a great story you wrote up. Cierra is such a bright girl, too! I was amazed at all she has learned and so young, too! For Gabi, it has been more of a struggle. I often feel guilty, and sometimes, I wish I could go back and change some of my expectations of her, too!

But... the real reason, I wanted to come talk to you today was because a couple months back you told me how much Gabi and Cierra look alike. I didn't see it really at the time. I was flattered though since I thought Cierra was a beautiful girl. Then, while I slept today (because I worked last night), my sister in law curled Gabi's hair and woke me to see. My first thought was, "Wow she does look like Cierra!" My husband took pictures and I will be posting them either Sunday or Monday on my blog. You'll have to come check them out.

Shannon @ Gabi's World said...

Sorry, I realized I spelled Ciarra's name wrong throughout my comment. Sorry!

LeeJo said...

No, it's not fair, is it.