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.

3.21 What Will You Do About It?

You're aware of Down Syndrome.  What will you do about that knowledge?

Today is the annual World Down Syndrome Day.  Chosen for it's date...3 copies on the 21st chromosome.  Numbers that make me happy in a sick, OCD, kind of way...They stand for something pretty huge in my life...and 21 is divisible by 3, with a result of 7 which is a prime number and has recurring religious significance... but we won't get into that today...It just makes me absurdly happy.

I went on a little tear yesterday about Lots-o-Socks Day...And I posted a smart aleck picture of my feet...naked...without socks...and closed it with a nod to one of my favorite sayings/verses: "Beautiful Feet"...and it occurred to me that not only may some of you not get the reference, but it would be such a great subject for today...

Isaiah 52:7
"How beautiful on the mountains are the feet of the messenger who brings good news, the good news of peace and salvation, the news that the God of Israel reigns!"

This verse is speaking about the idea that anyone who brings good news is beautiful.  The "Don't kill the messenger" thing, only in reverse.  In ancient times, not only did they walk in sandals or bare feet, but they were dreadfully gross after any kind of travel and folks had to wash their feet before entering a home or dining with those you had come to visit...so this verse compounds the transformation of the messenger by referencing the messenger's feet.  Not only does bringing good news make the messenger beautiful, but even the filth is gorgeous for it's participation in the travel and hardship to bring that gift of joy...and not just any gift, but the gift of Peace and Salvation. 

If you read the rest of the Isaiah chapt 52, it is talking about freedom of oppression and slavery.  Can you anticipate where I'm going with this? 

People with disabilities is this generation's segregation.  They are the ones that are repressed, their voices shut out, invisible, and abused in secret...with no consequences when the abuse is brought to light.

If I have heard one story of abuse of kids and adults with disabilities this year, I've heard 10.  Kids that have been verbally beat down, kids that have been secured with duct tape, kids that have been shut in bags or closets.  Kids that have been struck by teachers and aides.  People who have been taken from their lives and submitted to group homes' whims, people who have been hurt and killed by bullying or simple brutality.  And I've already addressed the horror of sexual abuse statistics and people with special needs.  All of those words that are highlighted are links to actual news stories...and if you Google, any of those words with Down Syndrome or Special Needs, you literally have endless stories...  I dare you to do it.  Does that make your blood run cold, or what??

These go up constantly.  And nothing is done.  Teachers aren't fired. (There are of course innocent people accused and I'm not saying there aren't exceptions.)  School systems have had multiple "incidents".  BUT WE AREN'T GETTING ANGRY???????  These keep going on!!!!!  And no one has drawn the line and said Gandalf-like, "Here, and no further!!!"

There is the silent abuse done by organizations that simply offer no support.  They refuse or hide behind peace for others or security or liability risks and don't invite those with special needs in...churches, public forums, private schools...you don't HAVE to say "We don't want you, don't come back"...all you have to do is make it too hard for them to want to come back.

In schools, there is the quiet, bumping kind of abuse, where teachers and the administration are ratcheting down the least restrictive environment in such a way that we as parents have to be aware of even how the wording of our kids' goals are phrased, so they can't be used against us down the road and force our kids into self-contained classrooms.

We are making it so difficult for these families, that those on the cusp, are terrified that "those kids" will  have "poor quality of life" and are aborting them before they have the chance to change our world. 

I have referenced the importance of the foot soldiers.  They are not "qualified"...they often don't do anything special but stand in the gap.  They fight for those that cannot.  And they are heroes.

So.  You are the foot soldiers in the battle for RIGHT.  You are aware.  What are you going to do? 

Are you going to flood the school systems with phone calls and mail when you hear of these incidents?  Are you going to get involved in your church to make sure that families with special needs are welcomed, supported?  Are you going to call your friends with kids with issues?  Have lunch with them and listen?  Are you going to give your wheelchairs to those who need them?  Are you going to donate to those adopting kids with disabilities?  Are you going to talk to those kids/parents at the play ground?  Are you going to include "those kids" to your child's birthday party?  Are you going to be a part of this revolution?  In short, are you willing to be changed to make a change?

You know.  You have feet.  Step forward. 

Let us not wallow in the valley of despair, I say to you today, my friends.

And so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident, that all men are created equal."

Sound familiar?  Stand up on your feet, whether they have crazy socks on them or they are bare naked.  Bring those beautiful things to your community and say to them with your actions "You have been released from oppression, whether from abuse or ignorance.  And I will be your friend."

And you will be more beautiful than a trip to the spa could have ever made you.