My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Thursday, January 8, 2009

Female Issues

WARNING: If you do not want to read about menstruation, click out now.

DISCLAIMER: I am not endorsing any products nor am I trying to pursuade readers to any particular solution. I am simply relaying our story. If you talk to other moms of teenage girls, you will get many different solutions. And for some, their monthly flow is no big deal.

Since starting this blog, we have received this question most frequently to Sarah's private email address: What do you do about her periods? I have tried to respond to all inquiries but I'm sure there are lots of you with this question that have not asked, so I thought I would just put a post out here.

From the time Sarah was about ten, this was one of my greatest worries. What would happen when... I was most nervous that she would freak out at the sight of the blood. Every so often I would talk to her about it and we had a few books, although they were not very good. Her flow did not start until she was 14, and fortunately at home versus at school. She did not freak out, but rather matter-of-factly came to me and said, "blood in pants." The first few months were very scant and short so we did not encounter any problems, and I was feeling like quite the successful mom. As things progressed, she needed the use of a more substanial pad. She hated this. She was always complaining about them scratching her and trying to adjust them in a not so attractive manner. I tried many different brands, sizes, and styles. None helped ease her discomfort.

Then one day she was at my husband's office and just decided she had enough. So she reached into her pants, tore out the pad, and flung it across the main room. Fortunately, the women in the office are all close friends and love Sarah dearly. However, this did present a challenge, as she could repeat this behavior at school which would clearly not be acceptable. So I started putting her in Depends for school, which she could not pull out without being in the restroom. I truthfully hated this solution, because we had worked so hard to have her look and act like her high school peers, and I was pretty sure that none of the girls were wearing diapers as they walked down the hall.

A few months later, we were at the doctor for her asthma issues. I mentioned to her pediatrian that Sarah was wearing a diaper because she was on her period. He said to me, "Why don't we put her on Depo Provera?" I had never heard of it, so I asked more about it. As soon as he mentioned "birth control" I said "Absolutely not." I was horrified that he would even mention it. Then in his calm, monotone voice he says back to me, "Don't look at it as birthcontrol, look at it as a way of improving Sarah's quality of life. It will cease her periods and she won't have to deal with it anymore." Hmmm....I had to think about that. Now that the topic had been put on the table, we discussed many different options.

It did seem the Depo was the best fit for Sarah. Her first injection went into her right buttock in the usual way we gave her shots at the time: one adult holding her body down, one adult holding her feet down so she would not kick, and the injector. Once a quarter for the first year, we repeated this scene. I always made a point to mention that the reason for the shot, was so that the bleeding doesn't come back to help her make the connection. Shortly after the first year, she started taking the shot without the human restraints and today I rarely go in the room with her. As a matter of fact, her brother drove her to her September appointment and she handled it all by herself.

Sarah has now been on Depo for five years and during this time has had very minor spotting a few times. Each year, we meet with the OB/Gyn doc to re-examine the benefits and talk about potential risks. I do not believe she has experienced any side effects, other than possible weight gain. There are days when I say, "Let's stop the Depo and try again now that she is older." But then I say, "Why?" I do not know if this will be a permanent solution, but for now it seems to be working fine.


Karly said...

Thank you so much for sharing what works for you guys. As a mom of a daughter, this is something that has been on my mind.

RK said...

That's good info for those of us with young girls. It seems like it's a long way off, but time flies! Glad you were able to find a solution that works for her.

Jaxsons Fight said...

I have a boy so i don't have to worry. But what a great mom you are. You are such an inspiration to me and I get to see what to look forward to as Jax gets older. For some reason all of our downs friends are still little. Sarah is an inspiration to to show people that downs people are like any other person. Lacey and Jax

Tsquared417 said...

Hi Joyce and Sarah! I'm sorry about your computer! I love your blog...I will visit regularly. You had me in tears from laughing, from words that tugged at my heart...have a great day!!

P.S. It's nice to know that DepoProvera my mind that's what I'm doing for Olivia when she gets there...which I hope will be a while!

Melissa @ Banana Migraine said...

I'm very grateful that you took the time to write this up and share what you have done. It's definitely something that I've wondered about.

Lianna said...

Having a son, I never really thought about this issue. But it is a very important one!

Thank you for posting your's and Sarah's experience! I think you've done a HUGE favour for many moms out there!

Thank you!

Mary said...

Wow am I thankful only have boys after reading that.

With that said thank you for sharing. I know a lot of us read your blog and learn from what you have already had to go through. You are helping so many it amazes me as I read through some of the comments.

Thank you again for sharing your journey with us!

Lisa said...

I feel bad to admit that this is definitely something I have wondered about, just from a curiosity standpoint since I have a boy. However, even with Finn, I wonder/worry about all the changes that will come with puberty some day and how we/he will deal with them. Wet dreams. Shaving. All that. It's scary enough thinking about that stuff with your "typical" kids (my oldest is turning 12 and on the cusp of puberty - ugh) . . . but throw in Ds, and it's a whole new ballgame . . . I think. I did get this book called Teaching Children With Down Syndrome About Their Bodies, Boundaries, and Sexuality, and I'm hoping it will be a good resource as Finn gets older.

Thank you, Joyce, once again for candidly sharing such a personal piece of Sarah's life with us.

Tricia said...

Thank you so much for sharing what works for you. Bailey isn't even two yet, but I've been thinking about it already.

Also, your blog is amazing. I just adore Sarah, and she has given me so much hope. I remember getting comments on my blog and not knowing who they were from, then I finally clicked on Sarahs name and I've been hooked on her blog since.

Maureen said...

wow, thanks for sharing. Having a daughter with DS myself I really wanted to ask, but didn't want to intrude on her privacy.

You and Sarah are the best!

Beth said...

Thank you for sharing this. My daughter is 10 and I have been internally wrestling with all this. This is exactly what I needed to hear.

I too have the book "Teaching Children With Down Syndrome About Their Bodies, Boundaries, and Sexuality" and highly recommend it (even to you, with an adult daughter). Even the first few chapters are relevant to parents of young children with Ds or other developmental disabilities.

Thanks again for sharing.

datri said...

Thank you for posting this. I've been on Depo for 5 years and heck I've loved not having a period. I will definitely do it for Kayla unless they come out with something better.

But my GYN won't let me stay on Depo past this year. Something about severe bone loss/osteoperosis. Might be something you want to ask about.

Kele said...

I sooo appreciate you sharing this, yet another concern of mine put to rest!!

Leah said...

Ohhhh a topic that has been on my mind DAILY for several months now! LOL Angela hasn't gotten hers yet, but she's at a Tanner stage 4, so really she can get it any day. In fact, tonight she's been complaining about a tummy ache, and it always gets me wondering if we'll see it within a couple days. Her doctor keeps warning me "any day now!" UGH!!! I hate that hanging over my head. I've had her watching this video (very old, but VERY well done!) on youtube I wish someone would re-do it and bring it up to current times. Anyway, after working in the disability world for 20+ years, I decided 2 years ago that as soon as Angela gets her period I'll put her on the pill. To be honest, I'm a little freaked out by the ones that put a period off for several months. To me it feels like too much messing around with one's hormonal system. I realize this may come back to bite me in the butt once I'm really facing the issue. LOL But for now, this is where my thinking is. I've just gotten to know another mom In real life who's daughter is 3 years older than Angela, and on the 3 month pill. She said it's really nice because she can time her period around vacations, etc. For Angela, I know her dad will NEVER take her while she has hers. So...I don't know...I don't know what I'm going to do. But, for me, putting her on the pill has as much to do with my having some control over when she gets her period, but also to protect her from the things I can't be there every moment in life to protect her from. At some time she's going to want to have a relationship. At some time, she's going to have to make choices. Or she could be pressured by someone else to make them. Or they could be forced upon her.