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.


  1. I commented on the FB thread, but wanted to mention something about reproduction. I had always heard women w/Ds have a 50% chance of having a child w/Ds and was confused by that. I also thought it would be 100%...if they have the extra chromosome in every cell wouldn't they pass that on to their baby?
    I was a conference recently and there was a geneticist there so I asked him about it. He explained that just like how Ds happened - how the baby (probably) received 2 of the 21st chromosomes from the mom because the cell didn't split off and give one from the mom - the same happens in a woman w/Ds. The egg would split off to either give 1 chromosome or 2 of the 21st chromosomes. Hope that made sense!

  2. Sorry didn't meant the egg would split off :) At conception the 21st chromosome of the woman w/Ds would either split to give 1 chromosome, or 2 of the 21st chromosomes to the fetus.

  3. It seems so unfair that kids with special needs still start going through puberty, even when they aren't emotionally ready for it. Starting to wear bras and deodorant and getting their period is traumatizing enough for typically developing 10 and 11 year olds!
    I work with kids with special needs, and I subbed at a school for kids who were pretty "low functioning" a few times. I had to change girls' pads a lot. It is gross, but not much grosser than changing diapers... just part of the job!

  4. Practice,practice,practice...that's always the start of things in our house. We live for the baby steps that lead up to the big 'thing' that makes it more digestible for the The Boy. Setting expectations and me being consistent (the hardest part for me) also helps him be successful in reaching the goal.

    As far as chemical birth control, I haven't had my period since The Boy was born 18 years ago. I initially took the Depo-Provera shot that I was told I could take forever. I didn't experience any negative side effects and was very happy with it. I have since switched to an IUD which I like even better (Once every 5 years as opposed to a shot every three months), but that's a pretty invasive process for insertion. With both of these options, I spot occasionally but rarely anymore than that nor do I experience cramps, migraines or the nausea that accompanies my normal cycle.

    I know that several girls that The Boy went to school with required help with managing their menstruation and the hygiene issues that come with it, the teacher and nurse were able to help them...I'm so glad I had a boy. Good Luck!!