Thursday, April 25, 2013

practicing growing up

As you know, Elise has Down Syndrome and Sensory Processing Disorder and ADHD.  This makes growing up a hair tricky.  Because she is delayed, I cannot simply tell her why she needs to do something, and warn her and then activate it.  She cannot comprehend it.  I also cannot just DO something for her developing body and expect her to accept it, because the SPD requires an adjustment period.  AND if I am successful enough to talk her into a change, her 2 year old heart wants to share the changes, and her ADHD mind thinks it's cool to show you, abruptly, with no warning.

Lately, I am attempting the placement of things that she will need in the future while it is not necessary, so when it is, it doesn't effectively ruin our days.

Implementation #1:  She is 10.  I fully anticipate that she will start physically developing before too long.  So I purchased 2 very soft, stretchy, shelf bra-lets.  Kind of a practice training bra, if you will.  She was VERY disinclined to try it on at first.  She wears it about 2-3 days a week right now.  She kinda likes it, it's smooth and doesn't bind, but she likes to ditch it, occasionally.  We've already added a day more than when we started.  I hope that by the time she needs it, she will be willing to wear it for the entire week. I am encouraged by this.

Implementation #2:  Ditto the physical development comment.  This has been somewhat rockier.  Deodorant. 

For someone who gags over wearing lotion, you can see why this is a little problem. 

I have gotten a vanilla scented one that does not make her ill.  She rather likes the smell, "yum!!".  She loved it, until she realized that is was for her armpits, and not snack.  I am still only at once a week right now.  But I, again, hope to add in the rest of the week by the time she smells like BO instead of hot puppy when she plays outside.

Implementation #3:  I have gotten some cloth pads.  I haven't done more than this, mostly because the whole situation nauseates me.  I have a low grade plan.  I will be taking her to a pediatric gynecologist (yeah, I didn't know they exist, either) this summer.  I hope to learn that she can take hormones or birth-control to prevent periods, except for once a quarter and keep her home during that time.  I cannot begin to fathom sending her to school until she gets some concept of the situation.  I would not wish that on my very worst enemies.  If I cannot do that, I will need to work it into her IEP  that she can stay home during that time of her cycle, until she has some education in the expectations and care of herself. 

Elise has already started the emotional roller coaster that is the hormonal monthly flux.  I admit that I am praying that she successfully even keels a bit more over the next couple of years...because the highs and lows are whiplash inducing.  Honestly, she started that last year.  But she has settled into a document-able routine. She has two weeks of plain awesome.  Then she has a week of bipolar highs and lows.  The final week is the week of emotional crashing.  Everything is bad and dreadful and not be be endured. 

While it is not easy, I do appreciate the cyclical-ness of the current status.  I don't appreciate being blind-sided by crazy.  But I can at least plan for it, right now.

sidenote:  I never understood even the idea of taking sterilization steps until lately...I see why it becomes an option for some situations.  I would never do this until it is clear that she wouldn't have the where-withal to make life choices on her own.  But I see the appeal.  (Interesting factoid:  A woman with Down Syndrome only has a 50% chance of having a child with DS.  I would have thought that because of the genes, it would have to be 100%.  Interesting, huh?)

The ADHD thing is still a work in progress.  It is NOT okay to make people smell your armpits or admire your bra.  I hope, again, that by the time it's an dramatic issue, that we have nailed that dead horse to the floor!!!

If there are readers of older young women out there, I would treasure any words of wisdom in these areas...and any more that I have not thought of.

Wednesday, April 10, 2013

To live is an awfully big adventure...

Do I think it is ironic that my child, who will undoubtedly remain a child forever, loves Peter Pan? 


Does that somehow completely enchant me?


“Pan, who and what art thou?" he cried huskily.
"I'm youth, I'm joy," Peter answered at a venture, "I'm a little bird that has broken out of the egg.” 

“I suppose it's like the ticking crocodile, isn't it? Time is chasing after all of us.” 

“If you cannot teach me to fly, teach me to sing.” 

“To live will be an awfully big adventure.” 

Thank you, J.M.Barrie. Thank you for putting beauty to the stoppage of time that has somehow taken up residence in my home.