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Puberty and Down Syndrome ~ Part 1

Posted Jun 15 2009 4:16pm
The past few months, I have been suspecting it. I wasn't sure if I was right, but the constant daily appearance of what appeared to be acne on Gabi's face was leading me to believe she was entering puberty.

At first, I was in denial. "Where is this rash coming from?" It was better on the days that I used Phisoderm on her face. Then, one day fairly recently, I noticed THEM. Her breasts looked slightly fuller. No, she doesn't actually have breasts. They are more of a budding. It almost looks like she has too much weight on her (only she isn't heavy.)

At first, I wondered if children with Down syndrome entered puberty early. After all, they are prone to getting dementia earlier than the general population and their life expectancy is still slightly shorter than average individuals. I posted a question on Twitter and Facebook to see what kind of responses people had. I thought I was being neglectful in not having researched this long ago. As a mom of a child with Down syndrome, I am supposed to be the expert on all things Down syndrome, right? Obviously wrong and to my surprise, everyone who responded only had guesses about it too. My searches on the internet were even futile. I couldn't find anything on the female with Down syndrome going through puberty and found only contradicting information regarding the males. Maybe they don't enter puberty early as I thought. Maybe they enter at varying ages just as the general population does. How is it that we determine when our children (special needs or not) usually go through puberty? That is when I remembered. I started getting breasts in the fourth grade (earlier than most kids). What grade is Gabi going into? You guessed it, the fourth grade!

I'll admit it. I feared this time of her life. I remembered how difficult it was for me going through puberty. Oh all of the emotions I went through! My poor parents (especially my mother) is all I have to say! Gabi is already the type of child who can cry and have a temper tantrum one minute and laugh and sing the next minute. How is she gonna handle the hormone fluctuations?

At that revelation, I decided I better start getting her some training bras so that she gets used to the idea of wearing a bra before nature necessitates it. Last week, we went bra shopping. She was thrilled! She loved the idea of wearing a bra like mommy. I was thrilled that they had at least some child-like designs. (I'll never understand why parents put "sexy" items on their children and then worry about their safety... another post for another day!) We opted for a plain white one and another with a cute monkey pattern on it to start with.

When we got home, Gabi was so excited about her new bras. I wanted her to keep that excitement. If she's excited about them, then she will more likely wear them. So I let her call Nana and Papa to tell them about our newest shopped items. My mom didn't answer her phone. So we called my dad next. I told him that Gabi wanted to tell him what she just got and put her on the phone. She was so excited and blurted out,
"Papa, I got new boobies!"
Shocked at her response, I couldn't help but to laugh. Oh, I would have loved to have seen my father's face when she said that! I am sure his face had more color at that moment than it has had in a very long time.

Then towards the end of last week, I had to take Gabi and Preston to the pediatrician because they were both sick. Our pediatrician at one point said, "... and the rash on her face looks like it may be from congestion." To my surprise, I responded quickly with, "It's not a rash." He looked a little surprised too and asked, "It's not?" That was when I explained that I think she has entered puberty and that her face has been broke out for at least 2 months and threw in there about her budding breasts. "How old is she again?" he asked. "9 1/2 and entering the 4th grade. I also started developing breasts in the 4th grade," I replied. After a short silence, he concluded, "I think you may be right about that." "Have you thought about what you are gonna do?" he asked. I realized with that question that there was more involved than I had already predicted.

Our pediatrician shared with me regarding his experiences with adolescents when he would volunteer at the Special Olympics events. He had some very interesting stories to say the least. Basically, they have normal desires, but teaching them appropriateness of acting on them and redirecting them to more appropriate outlets can be difficult.

This is where it gets explicit. So if you have virgin ears, heed my warning...

So what about the onset of menses? Our pediatrician said that once entering puberty, we have approximately 2 years before menstruation begins. I confided in him my thoughts of how I think Gabi may react when that day finally comes. Either she is gonna freak out because she'll think she is hurt, or she will try to hide it thinking she did something wrong.

This is when I question my decisions in the past. As a mom, you can imagine, I very rarely get to go to the bathroom alone. (Now it's with 2 visitors in there.) I have always been careful at that time of the month to not allow Gabi (or Preston) to see. I thought maybe she would think I was hurt. She did notice the use of a pad, and a couple of times, I had to explain "No, mommy does NOT wear a diaper!" Maybe I should have let her witness the normal womanly activities and just explained it as normal and made no big deal of it. Maybe if I had, I wouldn't be fretting her reaction so much as I do. I know... it's too late for the "what if's."

The pediatrician did tell me about what I like to call "the options." He said that often parents of kids with Down syndrome will put their kids on birth control or have them get injections every few months to lesson the periods or to turn them off. He said some parents have even gone as far as subjecting their child to a hysterectomy. (I am sure we are all gasping in unison over that one.) Her doctor wasn't suggesting it, he was just giving me information. He thinks that is a bit over the top as well. I can understand the hysterectomy only if there was a medical reason behind it as well (and to me Down syndrome is not a medical reason).

My personal thoughts regarding the other options is that it may not be a bad idea to lessen the periods as long as it won't interfere with her development. He suggested that I make an appointment with a gynecologist to discuss Gabi within the next 2 years so that we can have a game plan. So, what are your thoughts?

As you noticed, this post is titled "Part 1." I know this is going to be a reoccurring topic through these next few years. I am certainly not an expert on puberty and Down syndrome through each stage. Heck, I am not even an expert at where she is right now. This is gonna be a learning process. Please include any questions you have in the comment section. I am sure they will help me with preparedness and I can include answers in a follow up post.

Also I plan on buying this following book to see if I can get more answers as well: Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality If you've read it, tell me your thoughts about it. Was it helpful? Was it archaic? Was it a good place to start, but needs more work?
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