Wednesday, October 19, 2011

31 for 21: #19 Probably TMI

I have hesitated writing this one.  It seems like a too much information kind of post.  One that of all the posts I've made, I worry about Elise reading in 10 years and shrieking, "Oh, MoooOOOooom!!!!!"

But this is a unique low level panic in my life right now, and I am actually writing it, begging for advice and information.

Elise is telling me, on an hourly basis now, that she is 9 and wants her cake.  And she is getting taller and fluffier.  Less fat than thick...but looking like a growth spurt is in the offing for sure.

And every single doctor we go to now is asking me if she has breast buds or pubic hair...they are ALL anticipating puberty.  And that brings us to my panic.  If she cannot handle restroom situations without a little aid, what on EARTH are we going to do if she gets her period early????  I am currently praying fervently that she is a VERY late far we're safe.  But a little extra weight can escalate the speed with which she becomes a woman.

Okay.  The brass tacks are this: 
1)  She is not completely self-sufficient in the restroom.
2)  She is not communicative in her personal needs.
3)  She has massive sensory issues and hates things that touch her skin that are not the clothes of her choice.
4)  She hates dirty dishes and declines to touch dirty napkins....choosing to dump them in the floor.
5)  Her skin is crazy sensitive
6)  I am not ready for this.

SO.  Does anybody have any advice?  Books they can recommend?  For me or her or both?  Seriously, this is me begging.  PLEADING for direction.  Those coming behind me, I'll share whatever I get.  I promise.

Elise is independent enough to want to be independent.  But delayed enough that I'm genuinely scared.

Help.  Please.


  1. Yikes! I wish I had some advice. I am curious to see what others say. I can see why you are scared :(

  2. I used to assist people with physical disabilities and periods were part of it. We always used pads, not tampons, because of...well, you know, I don't have to go in detail! :) It wasn't a big deal. I would think that someone helping Elise out with that wouldn't be a big deal either, but I don't know what to do about her not wanting dirty things next to her or sensitive skin. I'm going to mull on that.

    Does your local connection offer workshops on puberty/coming of age for kids with Ds? Handling their changing bodies and stuff?

    PS One great thing to remember! You can always delete old posts!

  3. I'm going to comment on your blog, since my daughter won't read HERE! HA! Ok, here's the deal, my daughter is 15. She is absolutely capable of taking care of business in the hygiene area. She does have some (ok a lot) fine motor issues and that is her weakest area by far. First, we had her watch these videos a lot (make sure you watch part 1 and 2) they are wonderful and creepy all at the same time, and you'll see why. I wish that someone would redo them to be more...umm...current. Anyway, since she is all about acting out everything she watches on TV/video, my daughter would watch them then disappear to the bathroom to practice. I was not allowed to participate. Ahem! But through the closed door I could hear the entire script played out. We had supplies and "practice" going on for two full years before the actual event took place. And when it did, it was a non-event...FOR HER!!! We were rushing out the door to get somewhere and I sent her for that "go the bathroom before we leave" trip. When she was done she she came out of the bathroom and said, "I have blood. I have a pad." and I stood there at the door speechless. I checked. She did. I blinked a lot...and we ran for the car. Here we are 2 years later, and guess what? WE HAVE PROBLEMS! She is refusing to even ACKNOWLEDGE that she HAS her period and is walking around without ...stuff....FOR REAL! It's not until the obvious happens that it's taken care of. And so now we have other decisions to make, but since I have already turned this comment into it's own blog post on your blog, that topic would be for another time. ;-)

  4. My first thought was to try cloth pads rather than store-bought pads. I have incredibly sensitive skin, and a switch to cloth pads pretty much saved me from a 5 days of torture every month. Let me know if you want info about where to find them.

    My second thought is to check out this book:

    I've met the author and she is absolutely wonderful. I haven't had a need to read the book itself yet, but the author is incredibly knowledgeable and compassionate. (She also has a daughter with Down syndrome.) Maybe it will have some good ideas?