Thursday, October 25, 2012

Puberty, Menstruation and Special Needs

That sure sounds like a fun topic, does it not!?  Well no it's not and it's very sensitive, but for those of us with special kids it's also a very real concern.  My Gess turns 11 today!  She is becoming quite the young lady and impresses me each and every day at just how "grown up" she is becoming.  Still, she does have Down syndrome and there are some areas in which she is still unable to experience some things that most 11 year old kids do.  For instance she can't run down the street to her friends house alone or go to the store by herself.  If she went school, she wouldn't be walking by herself there either.  She just isn't quite ready for that amount of independence as she easily gets distracted and could end up lost or worse yet, injured.

Unfortunately puberty comes upon a person biologically without any consideration to their mental state and can sometimes exasperate things.  I noticed early signs of puberty about 2 years ago and immediately talked to her doctor.  She told me those signs probably meant that my daughter would be starting menstruation in about 2 years, by age 11.  Are you kidding me?!  Well, she wasn't.  Gess had her first cycle a little over a month ago!  Thankfully they will probably be irregular for awhile and it may even be months before she has another.  Still, I am glad that I took notice 2 years ago and began diligently preparing my daughter for what was about to happen.  It seemed to work for Gess' experience went smoothly, without incident or emotional turmoil, and that's hard to accomplish with any girl! 

This is a sensitive subject and I really sort of cringe at sharing something so personal about my daughter.  I am actually somewhat of a prude and rarely talk about feminine issues publicly anyway.  I won't even joke about how cranky, irritable or bloated I feel. However, I also know that I found very little talk about how to help a child with special needs handle this issue and to be quite frank, we need help!  I will say that there are may philosophies out there about how to handle certain issues and many I disagree with.  I think each family needs to make some of those decisions on their own.  You may or may not agree with my approach, but just know that it worked for us.

While I do not talk about these sorts of things publicly I do feel comfortable sharing information with my immediate family and knowing that Gess needed to be free to express her concerns to me I have always tried to be open with her.  When I realized she would be headed down that path sooner rather than later I made a decision to become more vocal about my own experiences.  As I began to share things with Gess I was very careful to make sure that my tone was always positive, relaxed and normal!  I think that is very important.  Kids can sense when you are uncomfortable about something and since this was my daughter who needed my help it was easy for me to just be myself.  So here are some things we did.

Whenever I had my cycle I would mention how I was on my "period."  Gess always does the shopping with me and when I got to the pads I would say "oh I have go get pads for my period."  I would even mention that I had to change it from time to time.  Then I introduced Gess to what a pad was.  I first explained why I needed them.  Yes, you will get the "Eww" when you describe what's happening and where.  Again, just speak calmly and keep your tone and mood normal.  Yep, it happens to young ladies and women.  It's just a fact of life.  It's also a good thing to talk about the cramping and down side but be sure not to whine and complain during your own cycle in a way that might scare the child!

I also demonstrated what a pad does.  Just get some water and add some food coloring.  Choose your color, it doesn't have to be red!  Then let them watch a pad do it's thing.  Kids who have younger siblings might be able to make a diaper comparison.  Gess had no real experience with that.  Gess actually thought playing with them was fun and that sort of fascinated her with it. Do that as often as you like.  Letting them get comfortable with the product is a good thing.  The doctor at the Down syndrome clinic even suggested letting the child watch the parent change their own pad so they can see exactly how it looks and works. 

Then it was time to introduce the bra.  Gess has terrible texture issues but I was thankful that I found some with very soft material that she took to rather easily.  These don't yet have clasps in the back.  We may never try those kind.  Over the head bras are great.  We may try a sports bra one day but these are much thinner, lighter and more comfortable so for now that's what we use.  It's a good thing to begin introducing them before they are necessary to give them some adjustment to the comfort. I also gave Gess her own deodorant and had her put it on every morning when she put her bra on.  Starting the routine is important as kids often find much comfort in that.

As Gess began to really near the time when it was most likely she would start her period we began practicing actually wearing a pad.  Finding ones that fit was the hardest part.  I prefer Always brand myself and one thing my doctor stressed was that it is important to have ones like those that really keep the fluids away from the skin.  She's right you know.  Gess can't stand to have a drop of water on her shirt so finding a good pad was essential.  We finally settled on Always Radiant Infinity Totally Teen pads.  I actually hated that they had wings because that makes placement harder but it also keeps it in place better so we stuck with it.  She actually learned how to do it without a lot of trouble.

Kids with texture issues, which Gess definitely has, will need some time to adjust.  At first Gess didn't like keeping it on very long.  My goal was to have her wear it for 2 hours every day.  Eventually she got used to it and kept it on longer.  Then one day she called to me from the bathroom and said, "mom I have blood."  I actually had this happen once before it and it was on her finger from a cut.  This time however, it was the real thing!  Thankfully we were "practicing" and she noticed it on her pad so there was no mess to clean up!  I handled it really well.  I went to that very calm, matter of fact, natural voice and told her that she had started her period.  (I then left the room and had my freak out moment when she wasn't looking!)

Because my daughter has a high tolerance for pain and discomfort I gave her an ibuprofen a couple of times a day just in case she was cramped or her head hurt.  My doctor agreed that it was a good idea.  While Gess didn't complain of anything she often will be very sick and never complain.  Her bleeding was also very light so we never had to deal with any major issues when changing a pad.  The doctor recommended getting a watch and setting the timer for every hour and a half so she could check and change often enough.  I still haven't gotten one but do plan to, especially when they begin to become more regular and her bleeding increases.

I know there are many people today choosing to do some hormone treatments to delay puberty but I personally feel that anything that keeps the body from doing what it was meant to naturally do is not generally a good idea.  I personally would leave that for a last resort treatment.  I am glad I allowed Gess to give it a try first because she certainly seems ready to deal with it and even is a little proud of it. 

I have also stressed that this is something we don't talk about to just everyone, especially boys.  Since we homeschool and she doesn't have a "school nurse" resource to speak to when I am not around I gave her the names of some safe female family members she could also talk to.  It was fun to have some female chat about our early experiences with Gess.  I am glad I have family that understands her needs that way!

Of course it's always important to share abuse awareness and safety during the procedure.  I often made comments that not just anyone could help her with this.  Long before puberty discussion we already began to address modesty and how no one should be seeing or touching her private parts unless they were a doctor or female family member helping her with medical or menstrual issues. 

We are also going to begin working on appropriate contact.  Gess is very loving and loves to hug people.  Now that she is a "young lady" we talk about how it's not appropriate to hug someone very long.  I might have her start counting to 5 and then end the hug.  I know it may sound extreme but our children really are more at risk of being taken advantage of.  There are also some issues we had last summer.  Gess was going around trying to kiss some boys at the pool and went and kissed some stranger's shirt at a garage sale because it had Mario on it!  She now knows you don't kiss strangers but she also needs to know that even people you do know have boundaries.  I would rather be safe rather than sorry.

So Gess turns 11 today and is already a "young lady."  She certainly does express a good deal of maturity.  She is very helpful around the house with chores, uses her manners most of the time and embraces more responsibility with maturity. People are certainly noticing and complimenting her all the time on how "grown up" she is becoming.  When I wished her a happy birthday this morning she hugged me and said "Thank you!"  While I want my Gess to be mature and safe, I also want her to be herself.  I pray that she learns how to be safe and handle her body changes while still being herself.  It's a self that brings life, light and love to the world and one I thank God for each and every day.

So moms, don't freak out (at least not in front of the child)!  Know you can do this and if you take the time, care and trouble to prepare them it may go better than you expect.  Of course each child is different and even if you follow of all of these steps your child may not take to it well at all.  I still think preparing them will have to help at least a little.  But in any case it will at least prepare you for that moment when you hear your daughter holler she has blood.  It's not a pleasant sound, but it's one that is going to happen ready or not.  That's something to think about anyway.  (And just so you know, Gess gave her consent to me addressing this matter on my blog.)

1 comment:

Anna said...

Thank you for addressing this important topic. You are right, there isn't much available and we all have different opinions on how we will address the situation. I've been learning that I need to always be thinking a step or two ahead of where we are developmentally, to think proactively instead of allowing life to just happen.


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