Sunday, July 27, 2014

Advocate Mom

Last year I wrote an Ode to the Convention for our local Ds group so if you're looking for a perky general NDSC Convention overview, go there.  It's all still spot on, except this year I met even more new dearest friends.  People I could spend hours & hours talking to, and who I'd get on a plane to go see tomorrow (and I don't say that lightly - the charm of jet travel is dead).  

Not that it was all social.  This was my third year going and I still had to make some hard choices between sessions. Perhaps because I wasn't feeling overwhelmed and frustrated enough with my life, I bypassed talks on inclusive education, technology, and cognition research (all dear to my heart) and went to the legislative action session, put on by Susan Goodman of the NDSC.  Oh, MAN.  That was not the right place to go for peace of mind.  There were no self congratulatory secret club hi-fives.  We are a population besieged and subject to the whims and grammatical errors of baby faced staffers drafting legislation in dark back rooms.  She talked about seclusion restraint, the ABLE Act, and Medicaid.  Issues that can wreck immediate and life altering change on families.  Apparently there's even talk of entwining IDEA with Common Core.  Is this a good idea?  Will it raise standards, ensure accountability?  Or will it erase decades of progress?  I have NO idea.  This is heavy policy wonk territory and so much of it depends on obscure studies and competing "experts."  So much depends on implementation and application by faceless bureaucrats.  It's overwhelming.

She also said something troubling - she said compared to other groups, the Down syndrome community is NOT particularly politically active.  

I was peripherally involved in the online campaign following Ethan Saylor's death and to be blunt, it left a not-so-great taste in my mouth.  The national groups weren't talking, the police were busy "investigating" themselves, and very, very few people gave a fuck.  Politicians, media giants, and celebrities who had children with Down syndrome stayed silent and ignored direct appeals for help.  Outside the Facebook group I was in, the internet let out a lazy *meh*.  Inside the FB group... well that was a PhD thesis on group dynamics begging to be written.  We were some pissed off parents with a righteous cause but there was also sniping, grumbling, and hurt feelings.  There were hundreds of ideas, letter campaigns, competing online petitions, and blogging manifestos - but in the end it all petered out.  20 angry letters go in a [round] file.  I doubt if any official ever got more than 100 letters, much less the 20,000 needed.  There were no marches in the streets.  No one chained themselves to the theater doors.  Turns out Ethan's mom was in favor of the police training many of us had lambasted as whitewash.  The officers who killed him were never charged.  I feel like we failed.

And then there's that pesky job-with-small-children situation.  I do enjoy my social media - I meah, hell,  I "have a blog" for whatever that's worth ($5 payable to google annually, if you're curious) - but I can barely keep up with the online petitions conveniently linked to in my FB feed.  I rarely make it to our local Ds group's fun events, much less to the serious stuff.  The thought of meeting with competing experts and parsing the fine print of my state's Medicaid law is.... just, no.   Susan Goodman suggested I make friends with my representatives' staffers....*snort*.  It takes a year for new co-workers' names to sink in (in fairness, turnover is high) and did I mention my lack of people skills?  I'm not going to do any cause any good if I show up with burnt cookies, stammering about obscure educational codes of which I have little understanding. 

There's also the small fact that I really haven't had to advocate for my daughter, not really. Not yet.  My girl's IEP team is fantastic and they've given, without us even asking, what other parents have to hire attorneys for.  No conflict.  There've been a couple doctors I haven't cared for and we've switched.  No big deal. I've chided people about the use of the R-word.  I hate the cold, hard eyes of the pre-teen girls at the park, but I stare them down and they keep their distance.  There aren't any campaign ribbons for besting 13 year olds.  [Though there really should be - those girls can be mean].  I find the number of competing Ds-interest groups a travesty of wasted resources, so I'm not going to start another, and the Great Letterbox debate bores me to tears. (It's a piece of paper, for God's sake - you think people will forget termination is an option if you don't mention it?  Gah.)  Unlike other, more natural advocates, I have had no searing experience to light a fire in my belly. 
But both my children love to sneak into our bed at night.  And as irritating as those elbows and feet are, I marvel at the fact that their safest, happiest place in the whole wide world is right there between mom and dad.  The level of  responsibility that entails brings me to my knees.  I'd like them to eventually venture forth in the world - not just so I can sleep better - but because it's their right as human beings.  I'd like it to be a reasonably safe & welcoming place.  It might not be, especially for my girl, but their trust requires me to try.  Small steps, people, small steps. 

And so with that it mind:  If you want to earn some good karma, contact your Senator and Representative to ask them to vote for the ABLE act.  This isn't a Down syndrome specific issue - all disabilities are welcome.  There is wealth of information, links, and pre-done templates right here, on the NDSC website, and if you don't know who your Rep is, you can find them here.  Send an email, make a phone call, drop a line on their facebook page.  Do good.  

Thursday, July 24, 2014

Hippos, Lilies, & Corks, oh my!

I woke up early this morning to finish one of my NDSC conference posts, then made the critical error of checking Facebook. Facebook is where blogging goes to die.  

So although the NDSC post is languishing, I'll gift you with what otherwise would have gone on FB:

Did you ever have one of those mornings where you manage to bathe, feed & clothe both the kids AND yourself so efficiently you're actually going to be (*gasp!*) early... only to have one of your precious progeny knock a huge, whole watermelon off the counter and onto the floor where it cracks open & sprays EVERYWHERE?  No? Just me?  Ok, carry on then. 

In other news, The Girl's horse camp is a huge hit.  On her first ride they reported she was frantically signing "all done" but they told her they'd go around the ring three times.  By the third loop, she was signing "more" and gets a big grin on her face every time I ask about it. 

The hours are HORRIBLE - It ends at 3 and there's no after care, requiring intense schedule juggling and abuse of employers' flex time policies - But there's a fairy pond with massive lilies and Matt arrived the other day to find all the kids swimming in the horse trough. I love a place that encourages my kids to get dirty and, OH, is she ever dirty.  I nearly didn't take her into the store with me Monday, certain someone would accuse me of gross neglect.  

And just in case that wasn't enough, they sent home horsey crafts made of wine corks.  Wine corks!  These are obviously my people.
A portion of my kidney sale is funding a scrapbook with pictures of The Girl actually on the promised horses, to be posted soon.  To tide you over, however, she will demonstrate the process:
Yes, Sonic went to camp too.  The camp counselors were thrilled, I'm sure. 

Sunday, July 20, 2014

If it's Wednesday it must be the washer leaking.

I spent last weekend in Indianapolis at my third NDSC convention and I'm only now coming off a high that's probably illegal in most states.  I love-love-love going to these, despite being a grumpy introvert, despite the money (though I wrangled grants this year!), and despite the emotional landmines I occasionally hit.  This year was no different.  I want to run thru some of the sessions on here but thought I should play a little catch up first.  
We've had fun! exciting! events almost every weekend this summer - I went to Yosemite by way of a work trip, we attended Gigi's memorial in Nebraska and saw extended family (happily without the expected fireworks), the whole family played extras in a movie, we finally did the local Step Up for Down syndrome walk right (turns out mimosas are key), The Boy went on his first official Boy Scout camping trip and built a rocket, and we had some of my favorite weekend guests for July 4th (happily with fireworks!).
The Rocket
Each of these deserved its own post.  Sorry 'bout that.  It never happened because I've also been fighting the chronic, unwinnable battle of trying to get my **** done at work.  It's a 60+ hour/week job and I only have 40 hours to give it, which leaves me constantly frustrated.  And tired.  
The frustration's compounded by the fact that something expensive is breaking around here every.single.fucking.week.  The best (but sadly not the least expensive) incident was when The Girl, who has taken to acting out her favorite videos with her dolls and iPad (adorable!), took the iPad into the tub (That she'd filled herself! Such initiative!) to reenact a certain Sofia the First Mermaid episode.  Turns out drying electronics in rice doesn't work.  At all.  The monitor on my computer then died in solidarity.  There were various other trips to the vet, optometrist, and thousands of dollars spent on the cars, only to lose first gear on one.   

I still can't run on my effing feet, so I tried to tackle the garden to blow off some steam, but we live with heavy clay... and the $%^&* tiller stopped working. You gotta laugh, right? 
The Schedule
Piling on, child care this summer has been patched together with scotch tape and old chewing gum.  My father in law has been a tremendous help with the gaps but I feel like we've over-imposed and my calendar of who's where watching which child looks like a NASA flight plan.  The Boy at least got to go to some YMCA camps but The Girl... did not.  Which is a whole 'nother series of laments I'll spare you.  Out of desperation we just signed her up for two weeks of hippotherapy camp, which I've always wanted to get her into and am a bit giddy over, but I'm going to be a kidney shorter by the time it's over. 
Step Up for Down syndrome!
I think I'm most frustrated with myself - all of this is just so much first world, (sinking) middle class bullshit.  I mean, hell, we had an iPad and cars to break, right?  I have a job I mostly enjoy.  Why can't I keep hold of the joy and let rest roll off?  How did I let a needy corporate America worm its way into my head?  

Both my kids are healthy and thrilled to be spending so much time with their Papa*.  Matt's cousin's new baby was just diagnosed with leukemia and they've started a six month stay in hospital.  They would chew off their own legs to be worried about car transmissions and summer camps right now.  

I don't really have a solution - this is just me wondering what the **** is wrong with my head.  Look at these pictures - it's like a magazine spread of Must Do Summer Fun (most of these photos are also the ones that ended up on FB - should we talk about people putting up a pretty front?).  Arghhh.  I miss running. 
 *I should clarify Papa Fritz is pictured here because we saw him in NE, he stayed with us for a week, & helped The Boy build his rocket.  I am horrified to discover I have no pictures of the kids and Papa Jim.  Sorry Papa Jim!!!