Links - and more!

This was shared by my eldest.

This is a thought provoking view.  Fourteen minutes well spent, I think.

Hilarious.

A conversation changer - on bullying.  And the follow-up.

_________________

I've pulled myself together, mostly.  The scheduling for a full-on nervous breakdown became a little dicey, so I've officially postponed it for the next fifty years.  One day I will want a nice pillow and a fluffy, soft blanket, and a cave where I can pull the rock over the entrance to block out the light, and then I will sleep for a decade.  But things are pretty busy here just now.  I'll just keep moving.  It's all good.

Grandma brought Q an iPad.  These types of events always leave me without my mouth hanging a little bit open.  Q did really well with the trial run he had during speech with the AAC guy's personal iPad.  It was very cool to see him slide and tap and play, clearly getting how it all works and managing to actually do it!  I'm sticking on the protective cover tonight so he can beat on the poor thing without actually killing it, and tomorrow sometime he'll be in full swing with letters and matching and sounds and coloring.  I think grandma may have done this partly out of self-protective instincts:  Q smashed in the keyboard on her netbook playing on kneebouncers.  Poor little piece of equipment has a prosthetic now - a regulation keyboard attached to a nine inch screen.  I don't think she minds too much, grandmas are often like that, but it's become clear that Q needed something of his own to play with, hopefully something that won't smash that easily.  Yikes.

I think the smash-happy boy is out so I'm going too. 

Pax, all you lovely people.

Wrung

This has been one of the more strange weeks I've experienced, which by now is saying something.  Other than sniffles because I'm tired, I'm really quite physically well, which is of course great, but I think it's the only major area of life that hasn't had something just, well... odd, I guess, occur in it this week.

So let's review, shall we?

Legal stuff was once again on the calendar this week.  I'm still not precisely sure what to make of the details, since I don't know what the ultimate implications will be, but I think we're done with court.  Yes.  Barring a sudden cosmic shift, I have no reason to be in family court ever again, for anything.  So that's good.  But...  Yeah.

Someone I know had a check-up this week, peeking in again to see what's new inside there, that sort of thing.  They know that something is going on that they'd prefer not to see, but they're going back again in six months and expecting to see very little change at that time, so that's good.  And things there are relatively benign, which is also good.  But it would be better if there just weren't anything to report, you know?

Q had his vision recheck this week.  His acuity is measuring 20/180 - 20/80, variable as one might expect with a likely diagnosis of Cortical Visual Impairment.  His pupils aren't as responsive as the doc would like, and he noted paleness on Q's optic nerves.  There's not much that's good about that.  I expected the CVI because there was thinning of the visual cortex visible on MRI.  And a thinner cortex does not necessarily by itself mean much in children.  Cortices can thin and thicken during different developmental stages and it seems that children who experience that actually show an increase in overall brain mass and perhaps intelligence later on in life.  But in Q, with a host of other stuff going on, it means something that his visual cortex is thinner.  And it means something that an optic nerve appears pale.  It means atrophy.

I'm having a hard time with this.

This week I've had to say no to someone on a subject that kills me.  I've been on the phone with a couple of people regularly in crisis management mode, on unrelated topics.  School is happening (sometimes even shockingly well - we can discuss Medea later), but without the mood I'd planned for.  Our motto for this school year, Do the hard thing, is feeling just now like the makings of a bad joke.

All of it is a little much, even the pieces taken individually are each a big hairy deal.  But this thing with Q knocked me back.  Throughout his gestation, throughout the five year legal adventure, throughout the gazillion diagnoses and revisions and meds and tests, and throughout the parenting challenge of the four more or less neurotypical kids as an unwillingly single mom, I've been up, down, and in between, but not really just a mess.  Something about this had me bawling the moment all the kids were in bed.

Here's what I think is going on.  While it's true that nothing changes for Q based on this news, I'd sort of begun to think that we were rather past major revelations and now into the hard work of seeing what he'll do with what he's got.  That we were into managing the needs for equipment and household modifications and meds.  Those things are very different from hearing that not only does your kid have all the other stuff, but now we can say that he's got this too!  And it's irreversible!  And explains much about why he seemed to hate yellow!  How can one like a color one can't see?

Sigh.

I'm not raging.  I'm not even mad, which I know many parents are when dealing with these kinds of things, and that's okay too - everyone has the right to his or her own response.  I'm just sad.  Q's got so much to push through and for, physically.  Plus, he doesn't have his dad around, who was so great with the older ones at this age.  There's just so much potential for loss and heartbreak in life without having to reinvent every single thing in order to let the people around you know that you'd like a drink of water, for crying out loud. 

And too, the last time those three Big Things were tied up together, I had just learned that my beloved was headed elsewhere, my whole life as I had known it was blowing up, and my brain had flipped into profound slo-mo.  I'm pretty sure it was stuck in shock for a few months.

Anyhoo.

So Q is getting glasses with +75 lenses and we're going to see what he can do with that.  And we'll try glasses with tape on the lateral portions of the lenses, to see what range of motion across midline we can get out of those little brown eyes.  And he'll have a VEP, which I suddenly can't tie to the purpose of the test.  To see what his brain is processing or using of what information does come through his eyes, I think.

That he's seeing at all is awesome.  He clearly recognizes - by sight, at a distance - family, therapists, teachers, friends, usual routes we drive to school, therapy, church, Target, the grocery store, library, and etc.  He knows things, age appropriate things, things he's had to struggle for.  He likes to turn pages with his fist when read to.  He knows stories and looks for particular things in the pictures.  He loves the RC cars he plays with at therapy.

He is a happy, magnificent little boy.  He has truly fantastic siblings.  We will be fine.

Things shall improve in the coming week.  I'm reducing certain responsibilities of mine, ramping up others, expecting good news, and thinking about making apple butter with the kids (who've recently held their own spontaneous apple tasting fest, complete with recorded comments and voting on the best variety of seven).  There's other medical stuff to attend to here and that will be taken care of.  And laundry will be done, dishes will be done, and so the quotidien will continue, in all its blessed guises.

To your blessed quotidien:  may it include hard and satisfying work, may it be so rife with gentleness and kindness that you fully feel your worth, and may it present the opportunity to enjoy some really great cheese.

XO.

Hey

So hi.  I don't know when I last hit a Friday night and didn't feel like I was skidding into home on my belly, complete with all the dirt and scuffing up of one's knees which that image implies.

I know I had something to say, but I don't remember what.  Hmm.  While I think, check out this.

(Elevator music plays...)

Nope.  Still don't remember.  I'm going to bed.  I should maybe not be so excited about this, but I am.  I've come to love sleep, perhaps partly for it's relative rarity.  Martha Beck talks in one of her books about chatting with a fellow grad student who was studying sleep-deprived mothers.  Her fellow student noted that these women spoke of sleep in the same way a crack or heroin addict speaks of the next hit.  Well, duh.

On that happy and so terribly intelligent note (and just before I break into my mommy's-gone-crazy, she's-mocking-the-ads-on-the-radio-again voice), hope you're looking forward to good, solid rest, kindness, and tenderness this weekend.  And some good, solid fun, too.  Maybe you'll need to whip out your crazy radio-mocking voice.

XO.

TGIF

Rowr.

This has been one bizarre week, mostly because lots of Big Things have cropped up, each on their own section of the proverbial horizon, so that together they seem to have created a new landscape.  Vague enough for ya?  Sorry.

So here's as far as I'm willing or able to go with specifics:  there are some people, rather a lot as it turns out, some of them close to us (in the royal sense), who are wrastling major, heart-rending, soul-ripping, crazy-making issues.  Think for a moment, paging through your friends, family, acquaintances.  Anyone there who just seems out of sorts lately?  Probably in some very subtle, can't-put-your-finger-on-it way?  Call that person.  Email.  Stand and throw chocolates at their front door (preferably wrapped chocolates) until they come out and shriek at you that they're calling the cops.  Erm.  Until they come out and ask what's up.  And then you can take that person to lunch and offer them random but sincere words of encouragement and maybe ideas for resources until you're satisfied that your person is bolstered, somewhat, and you can go back to your regular routine of not annoying people by throwing chocolates at their front doors.  Tra la.

Seriously.

Someone you know needs a soft place to fall.  Be the feather bed.  Go hold a hand.  Move in for a hug and then give an extra squeeze.  One day, you'll be in need and unable to do so much as wave a hand as you go under, and someone will come and lob things at your front door.  Or throw you a life ring.  Whatever. 

Sorry for the mixing of the metaphors.  Q has had a rough couple of weeks, sleep-wise.  Today in the pool, I thought maybe he would take the toys and make a break for it, losing the PT in his spray.  Well, almost.  Heh.  He was pretty funny.  He worked so hard, standing up and reaching for and then grabbing and waving various toys.  Unreal.  And can I say how dearly we love the therapy people?  (I know that I just did, I'm getting punchy here, approaching downright dizzy, so just humor me...)  Q is probably the luckiest boy in the world for therapists.  Each of them is just awesome, all with different approaches, everyone funny and wicked smart, terribly resourceful.  I could go on and on.

Anyhoo.  It's been a super crazy week, evidenced by the fact that I am edging on toward vertigo.  Sheesh.  Since the boy is plumb worn out, I'm off to bed. 

Hope you're having a lovely weekend, full of restoration and peace and time with those most dear to you.  Hoping also that you do take the time to reach out and tweak someone a couple of notches toward happy.  You, all by yourself, can make a huge difference for someone who might just be flailing.

"We are all in this together..."

XO.

Shift

"So if not all Victorian women scorned sex, why do we think of them as prudish?"
 
An amazing article.  Too bad the prescriptive was confused with descriptive.  I imagine that single fact has by now had the opportunity to ruin generations worth of expectations, at least in certain venues.  How very compelling and gratifying then is this small body of research.

Hiding

Yes, I am here because I should be doing something else.  I'm taking a few minutes off from being a grown-up. I'd like to be cocooning somewhere, welcoming in fall while wrapped in a blanket in front of a fireplace and reading, or something.  Whine.

Q's had some trouble sleeping over the last couple of weeks.  I'm hoping it was the virus he seems to be over now.  I do not do middle of the night on call mommy like I once did.  I may be slightly past my peak in that regard.  Whine.

Perhaps what I really need to do is three good things.  Yes.  If I were a grown-up, which I will not be for another three minutes, that is what I would do.  (She sits, still, waiting for the time to elapse...)

Okay. 

First, some amazing contacts have been made lately.  County and state developmental disability people are just incredible.  Good things are afoot and miracles abound. 

Second, school is going pretty well for all concerned.  Some of us have some speed to pick up, some of us have some organizing to do (spreadsheets are a girl's best friend), but overall, wow.  Q loves Preschool.  S loves her new math book.  K loves the opportunity to be silly with her English.  E loves thinking about never having to do schoolwork ever again.  And G loves that one day he won't have to discuss Latin or Algebra or writing with me ever again.  And I'm a little bit floored at how quickly those days are approaching.  Yikes!

Third, time with the kids.  We've been running together, averaging three times a week, using the Couch to 5K layout.  The app for the iTouch is pretty cool - K and I have made playlists for the runs and the C25K app shuffles the songs for us and then rings bells at us and hollers "WALK" or "RUN" when it's time to switch out the interval.  It is an experience that sort of knocks me over, running with them.  We start out all together, so we can hear the music in the cheap little clip-on speakers that hang from the back of Q's chair.  We can't make it too very loud, or Q will go deaf and people who pass by us will get snippy, but too soft and no one can hear the bells and voice or the music, both of which we've all decided we have to have or we just won't make it.  As we warm up and then run, we spread out a bit.  G's legs are so incredibly long, he can outlope us all and make us look just silly.  S's legs are so short, comparatively, but she runs hard and often passes some or all of the rest of us.  And whomever is pushing Q has harder work to do - usually me - and mostly ends up in the middle, trying not to lose sight of anyone.  We begin in a clump, cheery and full of extra wind, so that anyone more than a few steps away will be brightly hollered at when it's time to run:  "We're running!"  By the second round it's, "Running,"  and by the third a flat, "Run."  This cracks me up every single time, though I'm not laughing because I'm too busy gasping, "Cool down!"  So when we're out there, and I'm watching them moseying around a track or down a trail, I think about how blessed I am to be there with them, watching them do this cool thing, and participating in their growing up.  It's so big that it's almost too much, like accidentally getting an eyeful of the sun itself.  It makes the runs feel short indeed.

I'm heading to bed because I can.  :o)  Hope you're getting good rest and plenty of renewal.

P.S. We helped some friends last week who had flooding in their house.  I still don't have words to express how horrifying it is to see a home so terribly disrupted.  And I cannot imagine having to be the people in charge of whipping various subcontractors and insurance issues into shape so they will all produce what has to be a livable space once again.  It's heartrending and completely overwhelming. They could use your prayers, and probably some dinner if you're in the area.

Reward

I'm rewarding myself with a moment here, because I've all but finished certain portions of curriculum planning and wrangling for the school year.  First Year Henle is no longer scaring the bejeebers out of me, but I'm still expecting to be visited by spectors in the night:  The Ghost of Latin Past.  And of present subjunctive active.  And then of perfect and future infinitives active.

We began today and I'm just rounding out the rest.  This week is our "find your neck braces kids, and let's get ready to roll at full speed" week.  So the kids are immersed in workbooks and reading times and refreshing their wee (or not wee) heads on math concepts - how do math concepts just escape like that?  And I have one who is now a talker, who wasn't so much this way last year, and her sibs are not inclined to tolerate her happily in this regard.  We'll be working on that.

So I'll be writing actual lesson plans over the next few days, filling up our binders with spreadsheets and other bits and pieces that need to be adjusted, and cracking open a lovely box of new pencils.  Good times.  There are a handful of books to order yet, a couple from the UK, some from Amazon, and a few from more obscure (educational) publishers.

Earlier this evening (or yesterday) we attended the last concert in the park for the summer - a group of five young men who play all manner of stringed things, including fiddle, and are/were homeschooled.  The sense of humor and stage presence was neat - they were very comfortable up there, in contrast to some of the other acts we watched in other weeks.  Really talented guys, and we especially enjoyed the oldest's favorite hymn (Come Thou, Font of Every Blessing) and the youngest's take on James Brown's "I Feel Good."  So we're carrying that with us as we go forward to our own fun evening tomorrow, when we head out to a local assisted living facility to play our little hearts out for the residents there.

Happy almost fall, peeps!  In honor of the time of year, crack open a book you've been hoping to read.  You know you want to.  XO.