Hey

I thought I should try and get a post in before we hit the halfway mark in December.  Heh.  So here's Life, in a nutshell.

I was privileged to spend a little time in the capitol recently, listening to some very smart, thoughtful, kind people from both sides of the aisle speak about issues on the fore of everyone's mind these days regarding this state's Developmental Disability community and emergent issues therein.  I can now talk for hours without ceasing about budget composition, Medicaid personal care hours, and why the waiver waiting list has 18,000 people on it, each of whom needs actual help.  You may wish to avoid asking me about this, depending on how much time you have to listen to the minutiae.  Or you may wish to learn about the minutiae yourself.  Happy to help - if you can catch me.  (eyeroll)

We're moving.  I have a squid sitting in the garage over there at the new place.  A preserved squid.  And dissection tools and goggles and maybe even a fetal pig.  And sea star.  And some worm.  That last one?  I am totally not staying in the room for that one.  I really enjoyed dissection in high school and would have enjoyed the cadaver lab in massage school, had I not been pregnant (urf).  So yes, I am looking forward to this - all except the worm.

Rabbit trails.  So we're moving!  Lots of trips over there this week, hauling stuff out of Mom and Dad's house.  We'll be having the big push to move beds, bookcases, and clear out storage during a forecasted deluge.  Hooray.  (Picture Ben Stein, presenting with an extra flat affect.)  I have moved in the midst of two feet of snow and frozen gutters.  I'm sure this will be fine - lots of rags and towels to clean things up as people carry furniture into the house.  I think I'd rather move with ice and snow.

Q's IEP meeting is happening next week, so I've been prepping for that.  He's playing matching games with his teacher at 100% accuracy, so she's thinking it's probably time to move on to sight words.  Hooray!  We're working on adapting the iPad further for him, a better bed situation (crib too small, regular bed too low, not low enough, etc.)

A couple of single moms with kids who have developmental disabilities have had some rather urgent needs on the one side, and a need to be helpful on the other.  So cool.  It seems like good things are coming out of ashes there.  Both are in the midst of wait lists and medical appointments, looking for that diagnosis, whichever one it is, that will by virtue of existing unlock the door to services within their school districts and local therapy facilities.

Speaking of urgent needs, I do believe Q is out, finally.  I'm toddling off to bed.  A cranky SI joint made the first part of this week really just awful for me, but it's smoothing out a bit, as long as I walk in a straight line and don't lift too much (ha!), so that's my big concern for now: getting sleep and having less back pain.  I am, as one of my cousins said, "a responsible person" at church tomorrow (which will let up over the coming weeks), in addition to all the performances the bigger kids are juggling.  So off I go.

Stay warm and dry, and be someone's soft place to fall.  G'night and God bless you.

All about

This week brought snow, record low temperatures, a power outage, and odd miscommunications between an otherwise very reliable doctor's office and the pharmacy (which bent rather far backward in resolving the issue).  The house stayed pretty warm the night the power was out - aided no doubt by the addition of four extra people, happily marooned here by slippery hills.  The wind chill that night was around zero, but it only got down to 60 inside before the heat came back on.  The following night was colder - I woke around five thinking that my face was startlingly cold and listening for Q to complain about the same, but buried myself immediately in the soft and warm blankies and passed right out again.

It has been a fun week, despite some unusual frustrations.  It's been a fun year, really.  New responsibilities for me at church morphed into a unique service opportunity which seems to be showing lasting effects.  Creative projects popped up all over.  We're all learning, growing, doing - and efforts made have given evident results.  It's all good.

Many of you know some part of this family's story over the last five years.  Heck, some of you have known the whole story, from before there was this family.  The last five years have been something rather indescribable.  Certainly nothing like I'd expected.  And yeah, if I had a do-over, there are major things I'd change.  But life is very good, despite the undeniable holes (they're how the light gets in, after all), and for this we are profoundly grateful.

Things are shifting a little here.  Q continues to grow, which means escalating physical needs.  He's also about to have another round of appointments with specialists, new ones this time.  Other family members are experiencing upticks in accomplishments and output.  The combination of these factors means that we could use a different look at how life proceeds at our house.

So first, a short, annotated wish list (it always helps to make a list and throw it out there - one never does know what will come of it), then one of gratitude. 

Things Which Would Make Life Easier in Some Way:

• Perhaps the most useful "thing" would be a sort of housekeeper type person.  I'm coming to realize the sheer number of hours I must spend functioning as some level or type of specialist in order for the individuals in this family to succeed:  massage therapist, personal care provider, nursing, administrative tasks, organizer, supervisor, chef, chauffeur, buyer, bookkeeper, events planner and coordinator, accompanist to music practices, teacher, tutor, official snuggler, and on and on.  At some point I run out of hours and collapse.  If there were someone who could take a little bit of the plant services/housekeeping portion of my job description?  Oh, wow.  Just thinking about it makes me all misty-eyed.  This item is something I'm musing on, more than listing, really.  The kids are big helps, but they have their own stuff to do too, like learn, play, and be children. 
• IT specialist, also not a "thing."  At this time I don't have what it takes to add this to my list in the Job Description.  We have stuff going on here which needs attention from someone who knows his/her stuff, and that person won't be me in the foreseeable future.

Gratitude:
Cake.
Lovely and loving people.
Running.  (And sweating.  There, I said it.)

Snow and the melting thereof.
A warm place to keep the brood when it's horribly cold outside.
Money.  Enough to manage the important things.
A nice bag of Brussels sprouts.  Which K is going to roast for me.
Paperwork, because it means that there are solutions to otherwise thorny problems.
Resources and a brain which links them up.

Dissection kits.
Carmex and lotion for early winter weather.
Hugs from punkins.
A fun time at the movies with friends.

And now, to bed.  Hope your wish lists and gratitude lists collide in spectacular ways.

XO.

3GT

One: that we live in a country which supports the often uncomfortable airing of one's opinions. The kids and grandparents and some in-laws and various extended family members traveled to the state capitol one evening this week and were present on behalf of Q and those who couldn't be there because their families are spread so thin already in their care. We were there to protest proposed cuts to adults with special needs medical coverage. We need to figure this out and quick. The persons most affected are the most vulnerable among us and if it means living with some potholes, so be it. If it means digging into our pockets to subsidize our neighbors' life-saving meds, so be it.

Two: Neil Young styled parodies. Love it. :o)

Three: good pharmaceuticals. I am so grateful for effective meds. So grateful.

Hola

It's been a big week in neuropsych land:  visits and meds and blood work.  Poor little Q got stuck twice and now has a bruise on at least one of his arms from the phlebotomist chasing the wee rolling veins around.  Q took it well at the time (he usually does), but was feeling fragile by the evening.  Meanwhile, I'd like points for not crying, throwing up, or passing out while holding his arms still.  I watched the needle the whole time, praying over it a little, willing the guy to just get it, already.  Sometimes the curse words should be bigger.

We seem to be in the middle of the yearly misunderstanding re: healthcare coverage and processing of paperwork for the kids, so I laid an unholy amount of money out for prescriptions, with fingers crossed that at least part of it will be covered.  Feeling rather nauseous about that, now that Q's blood draws are done.

Three Good Things, and then to bed.

First, that we have really, truly, incredibly good doctors.  Funny, smart, and they get it.  Awesome.

Second, that I have made the week run on very little sleep.  I may be on the verge of maxing out my lifetime caffeine allotment, but at the moment I'm just seriously grateful that we managed ALL THE THINGS (with some well-timed help, thank you so very much, you angels know who you are) and we're all in one piece, we're all friends, still on the same side even, and everyone seems to be really doing very well.  I worry about that part, you know.  So I'm glad for the lovingkindness I see in my punkins, especially when it's spontaneous and between the siblings and when I'm this wiped out.  Does a tired mama's heart good.

Third, I'm going to bed now.  The rest of the perpetual Q laundry will hit the washer in the daylight hours, somewhere between church activities (which would be the fourth good thing, were I not almost asleep right now) and bedtime next.  And there will be bleach and soaking and (TMI alert!) various bodily fluids will be washed away and all will be fresh and pleasant once again, and I don't even care about any of that right now because I'm going to my bed and shall try not to pass out in the middle of a face plant into the pillow.

XO.

Whoosh

Sliding into home again.  The week is done, but for the push through church and all that entails.  I'm glad this week is over - too many enormous things piled up too easily upon my head.  One shouldn't have a week which involves an urgent trip to the IRS office.  Even if the reason is ultimately good and even beneficial, which I think it was.  Still, no.  "Urgent" and "IRS" plus foiled expectations do not make for a week of bon-bons and pedicures.

Rowr.

Three Good Things, then, with which to spin my brain and heart around.

The weather has been shockingly warm and lovely.  It hasn't felt like November, though it's dripping a bit out there now.  We've been running in the midst of twirling leaves, settling themselves down to the ground.  Their colors are saturated burgundies and bronzes, lush greens, toasty browns, and then splashes of juicy yellows.  The sky has ranged lately from turquoise to lapis and then dipped into all those lovely shades of cornflower.  I've wanted to bite it.  Because it looks luscious.

Warmth.  Friends, family, fleece pullovers, sweaters, hot drinks, hats, inspiring reading, shared moments, a post-run shower.  All so nice.  It's good to have the autumn nip in the air as the sun sinks for the day.  And good too, to have the option to be warm in all the important ways.

Progress.  I love it so.  I'm thinking tonight of friends who have struggled over the last several weeks, in their relationships, inside their heads, in their life's work.  Each of them has pushed with everything they've got for the too elusive progress, and they may not yet know it, but their efforts have already paid off.  Their clients are happier, their spouses and children more settled of soul and grateful to be so, and their interior lives already feel calmer and more kindly disposed.  They've each engaged in a Herculean effort, one which often feels all too Sisyphean in nature, an undertaking that has required more of them than they thought they had, and?  The results are trickling in.  There's been a slight but elemental shift.  Their work has been rewarded and will continue to be so as it builds on itself exponentially.  And I am awestruck, watching these things unfold.  To desire change, to commit to being that change, and then to do it...  It is a stunning thing to behold.

Thank you for being here and for reading. 

May you too experience a shift, may it be whatever you truly need - even more than what you want, and may you know a bottomless renewal in that shift.  Take a new grip with your tired hands, baby, and strengthen those knees.  Mark out a straight path for your feet so that those who follow behind, though they be weak and lame, will not falter but become strong.   (Hebrews 12: 12, 13)

XO.

Word

When you don't know what to do, do the work at hand.
- Calvin Coolidge

Three astounding things

First, thank you for the encouragement following the last post.  Sniff.  You guys rock.

Second, about there always being a solution?  Well.  There is.  Sometimes the solution one chooses isn't pretty.  Sometimes that solution requires a lot of clean-up effort in order to pull it off.  Those solutions often result in so much sadness that it can be hard to think of them as solutions.

Third, how about those solutions?  It's been a wild week, people.  After most of the paperwork was done there were other things to attend to.  I have recently been privileged to be involved in various stages of miracles, perhaps AKA: solutions.  I sat with groups of people this week in three distinctly different contexts, and the churning of the wheels, the possibilities and likely solutions that filled those rooms were so huge as to push out the windows in search of more space to inhabit. 

The first was a bunch of people who work with various organizations concerned with or representing families and individuals dealing with an atypical set of expectations for life.  I hesitate to say "people with special needs" in part because don't we all have special needs?  That group knocked my socks off and I'm sure they will again.  Moms and Dads and Self-advocates have shown up.  No.  They have SHOWN UP.  They have skills in both the professional and empathic senses, they have commitment and a desire to make Big Progress. Undoubtedly they shall, and I plan to be there celebrating it.

The second context, chronologically, was a group of people who chose to lead with compassion instead of judgment.  They will therefore be part of an evolving miracle, one which occurs over time and will no doubt knock many pairs of socks right off.  My mouth is still hanging a little bit open from the experience, but I've pinched myself, and yes, it really did happen.  The work isn't done, but that it is supported is huge.  These things spool endlessly out on behalf of the righteous, the good, the useful which lies in each of us.  Those people who chose to be kind and to try to understand when they could have been cruel, those people have grown themselves a bit by moving past their natural comfort zone, and will grow more as they continue in this process.  Amazing, the things which become possible when we're looking for opportunities to become conduits of Grace.  (Sometimes the end result doesn't even matter - because the work/growth/joy along the way has so changed us all, but that's another story.)

The third gathering was to honor the memory of my dad's uncle.  During the telling of his life story, one of his daughters related that he experienced a condition we now call high-functioning Autism.  This is a big deal in the context of family history, in part because generations past would rather die than discuss such things.  In part, this is a big deal for certain members in younger generations, some of which have stared myriad possible diagnoses in the face for their own children:  PDD-NOS, ADHD, Asperger's syndrome, Tourette's syndrome, clinical depression and etc.  That we could sit and hear this about this kind, hardworking, talented man who so clearly meant so much to so many, and let it inform the depth of respect and appreciation we already had for him, afforded each of us an opportunity to gently let go of the portions of his personality which never quite made sense.  We were able to take these words: "he experienced a condition we now call high-functioning Autism" and acknowledge that the very literal fight for survival in a missionary family during the Great Depression was tough beyond what most of us can comprehend.  Those words removed an inappropriate moral overlay to a complex human being.  He was not lazy; he was pushing with all he had to get where he did.  He was not slow; he had a bright but differently organized brain, one which was always ready for benign mischief or to share his collection of harmonicas.  He was not stupid; he poured his love into his wife and children, even as he wished for a more "normal" connection with the rest of the world. 

So as we took in these words (which some in the group had come to believe even before they were spoken in this setting), those of us working hard to figure out the puzzles who are our own children let out a collective breath of relief.  We are not crazy.  We are not doomed.  We are not making this up.  And then with that we can acknowledge this:  There is no normal.  There is very little "optimal" or "typical" in the world, and we can demonstrate this through a ton of research, should the need arise.  We will take our people the way they are, thank you, and stand on the shoulders of those giants who have come before - like my dad's uncle: a man you would have been lucky to have known, but may also have thoroughly mystified or frustrated you.

My week has been heavy on knowledge of brain function.  Some of you are snorting as you read this.  Do try to get a grip - just because you think I live in the world of brain function...  Sheesh.  Well, okay.  I do read some (gazillion books) on the subject.  And I could recommend titles, if you're interested, she says hopefully. 

There are a couple of things that I've talked about more than once this week, things which I think are important enough to repeat here.  Feel free to share the following - I think it needs to get out there. 

Many years after Freud and his stages of development, psychology/psychiatry has moved on, hopefully into a good, solid combination of neurology and psychiatry, with a nice underpinning of cognitive behavioral therapy.  Why would I say this?  Thanks to the curious researchers who've worked in the field since Dr. Freud, we know some quite useful things about what happens in our brains.  Let's take depression as an example - because interestingly, it is somewhat easier (for me) to describe than many other commonly known neuropsych diagnoses.

First, it is useful to think of depression as a literal depression of certain levels of certain chemicals, serotonin and dopamine among them.  These neurotransmitters are what's rolling around in our gray matter when we feel content, rewarded, glowy.  Oxytocin is another, one that helps us form attachments to the people around us.  It positively floods a mama when she's nursing her infant, which as one might imagine is an especially useful feature of human function - a necessary act, feeding, furthering the bond between mother and child (and it feels a little like being hit by a big, warm, fuzzy truck).  Oxytocin is also present and available during sex, especially for those already fond of each other.  Another handy biological thing.  Dopamine pops in for a starring role in sex/desire as well. 

Back to serotonin.

Serotonin is the chemical that helps us feel buoyant enough to "do" life.  Its absence creates a literal depression within the brain, a lowered level of useful chemicals, a drop in function, sorting of priorities, and accomplishment.  Most of us are aware enough of that, cognitively at least.  But until more recently, most of society ascribed loss of ability to do the regular things of life to wrong moral choices.  Thus a horrendous stigma attached to mental health issues of any stripe.  I'm sure you can think of someone you've known who has struggled to reach his or her potential, despite being quite bright.  That person probably felt badly enough about lack of acheivement, but it's even worse to not know how to drag oneself out of such a place.  Straining against one's bootstraps will never serve to overcome depression, though it surely isn't wasted effort.  More on that in a minute. 

What we know now about how serotonin works in the brain is this.  When you feel sad for pretty much any reason, serotonin levels drop.  Loss of a loved one or job, health issues, each of these are recognized as having a fairly significant impact on one's ability to bounce cheerily along.  But even if it's a smaller life event, say, a twisted knee or having lost fifty bucks in the office pool, these things too can show up in your brain as a drop in serotonin.  For smaller life events, we certainly do give those bootstraps a good yank and expect to be back to "normal" in minutes or however long it takes us to wrap the knee in a compression bandage.  But what about for larger events?  It turns out that any more significant drop in serotonin results in a shrunken brain.  Seriously.  Without good levels of serotonin, your brain shrinks. 

We used to think that brain shrinkage was inevitable, with injury, disease, or just aging.  Nope.  It turns out that when serotonin levels drop the stem cells in the hippocampus stop turning into new neurons.  Did you know that you have stem cells that the hippocampus turns into new neurons?  You do.  It's true.  Our brains are continually pruning unused branches, but they are also continually growing new ones - unless we have insufficient serotonin levels.  Most of us can handle some of this shrinkage.  We get that there are Big, Difficult Things in life and we flail and slog and then emerge triumphant on the other side of that temporary slough.  But this isn't the case for everyone - some people's brains don't snap back.  There are also brains that do not, have not, and will never self-regulate well, in terms of neurotransmitter levels.  And perhaps the most important thing to know about this is that there is no moral component:  people struggling with depression have not chosen to be depressed and they are not screwing with your head just because they can.  (Okay - important note: sociopaths are a completely different category.  Their very own, very special category.)

So if people who struggle with depression aren't thrilled about being depressed, if those of us around them aren't thrilled for them, how do we fix this?  Surely, rather than sitting around decrying the situation and feeling tortured on behalf of our loved ones, there must be a solution.  Aha.  I'm so glad you asked.

There are lots of medications, very good ones.  It's difficult to nail this option on the first try, but not impossible.  There are supplements - amino acids are the precursors to neurotransmitters such as serotonin and dopamine and there are books which discuss appropriate dosages.  Amino acids taken individually to address particular parts of particular brains can often address depression, anxiety, ADHD, and a bazillion other issues quite nicely.  Some practitioners believe that everyone, including children, should be taking a minimum of 1000 IU of Vitamin D3 daily, with most adults needing at least 2000 IU daily just to maintain healthy levels - which drop MS risk and contribute to a healthy brain.  Omega 3 fatty acids are essential -  60% of the stuff inside your skull is made out of fatty acids.  Omega 3's are the best option to make that brain a happy one.

There is also the need to work actively to form healthy brain-support habits.  For example, not believing every negative thought that comes to mind - most of them aren't true, but they like to take root, burn pathways into your brain, and make your life miserable.  They help to create depression - and once a person has had one episode, another is more likely to occur in that person's life, and perhaps more dramatically so - because those pathways are already there and asking to be used.  If you help a negative thought sit inside your head long enough, it can seriously mess you up - nothing like talking yourself into a situation that costs you your family.  Regular, sweaty exercise also changes your brain chemistry for the better.  Eating good food - no food coloring, minimal processed sugars, good balance of nutrients, organic whenever possible - makes a huge, demonstrable difference in how our brains function.  Volunteer - even if you don't feel like it, helping someone else always lifts you. 

And what if you're doing everything you can think of and things are still kicking you down?  There's a lot of help to be had, people.  Really, really great help.  Find someone who cares about you and tell them that you need help getting to help.  Your friends and/or family cannot fix this for you, much as they wish they could.  But they can help you get to a person or place offering some relief.  You must speak the words, "I need help.  I can't do life this way anymore.  I am depressed and I need help."  People want things to be okay and they often don't hear your plea correctly the first time it's uttered.  Say it again.  If necessary, take a breath and say it again.  If there's no response, it probably has nothing to do with how much that person does or doesn't care about you - they may need to wade through their own baggage to be able to hear you.  Do. not. give. up.  And hurry up!  The world needs you, in one piece, highly functional!  You've got stuff to offer and we need you!  YOU!!!  (Aherm.)

If you're living with or know of a person experiencing depression, it's important to remember that the depression isn't the person.  It's important, if at all possible, to haul that person bodily to a place where they can get help (one excellent option).  And remember that if they've asked for help they may now be flat worn out and unable to initiate anything else on their own behalf - like getting help.  It's important to remember that depression is exhausting to those who have it residing in their heads and to those who love them.  It's important to remember that depression can present atypically - with bursts of energy, for example, followed by inactivity - and atypical patterns can still be depression because of whack-a-do neurotransmitter levels.  It's of utmost importance to take excellent care of yourself - always grab your own oxygen mask before helping others.

And for all of us working under stymieing diagnoses, be you friends, families, or persons with a diagnosis:  Rest when you need to, be kind, do good things whenever and wherever you can, and pray.  Read uplifting things, be genuine in and about your struggles, and pray.  Keep a gratitude journal - three good things every day, find or create and revel in things that make you laugh, and pray.  Be hopeful.  Know that there is truly, always, always an answer to be had.  It may be a different color than you were expecting, it may require anesthesia to survive, but solutions lie all around us.  Know this, down to the bottoms of your feet and with every electron in you, and pray.

Hope comes in the morning, baby, and dawn is about to crack.

XO.

The day

Or rather, parts of it.  Today I have run errands for my mom who is post-op and doing well, thank you.  I have made lots of food (thank you for the help, you know who you are).  We have practiced violin and piano for an upcoming performance.  I have emailed on urgent matters.  I have signed papers, including, but not limited to, divorce papers and eligibility determination for Q.  I didn't cry on the papers.

Having to do two sets of paperwork for pretty much the two biggest things in my life, my kids and my marriage, both of which require or indicate an emphasis on the awfulest things about each of them, is pretty much enough already.  My marriage had good and bad, but I would never, not ever, not for anything, have ever said or thought that there was more bad than good.  And Q?  He's a bright-eyed, smiley little boy who is such a challenge to care for that he'll easily be eligible for some sort of personal care hours.  In order to exit a marriage, it seems one doesn't talk about the sweet, kind, funny, brilliant human being one made promises to and babies with.  In order to acquire personal care hours, one speaks only of the deficits, the gaps, the missed milestones, the myriad diagnoses, all the things he cannot do.


I'm afraid that I'm rather inarticulate about this.  It's just a very strange place to inhabit - living and having experienced one thing, while faced with piles of paperwork defying that life and experience.  That I have  two separate piles of paperwork with such similar (to me) themes feels a little outside what I can process at the moment.

It is what it is, and etc.

Tomorrow Q has preschool, and there are various appointments to make, school to be tackled, more practicing, laundry, and the rest of life to be lived.  I have more stuff to pull together for Q's eligibility process, and I will not cry on that paperwork, either.  Or maybe I will, because right now, for the next couple of minutes, I have completely had it.  I'm done.  I can't hold it all together, be sensible, keep tension between the good and the bad.  I'm taking the next two minutes to be an incomprehensible mess who isn't capable of a single thing, and may actually scream until the windows break.

Okay, I'm back.  Can't scream, it would wake the children.  But I did locate another Kleenex box.

Maybe later, when I get to the scheduling of the official nervous breakdown, I'll take up base jumping.  It has promise as an activity - has to be fairly adrenaline laden.  And I bet when one screams while hurtling through the air wearing a squirrel suit no one ever thinks anything of it.

Life lessons (because I need for there to be something useful in this, right now):  try not to handle certain paperwork in the dark, when everyone else is asleep.  When everything sucks, wait two minutes.  Something will shift.  And everything, every single thing, no matter how dark or horrible, can be figured out, worked through, hugged and kissed and made up over.  Every. single. thing.  I believe that to the bottoms of my feet and with every electron in me.  And you know what?  It's true.  It works very well with my children, but it's true for grown-ups too - you only have to believe that there's a solution to find one.

I sure hope I'm well tomorrow.  I really need to run and sweat, without worrying about passing out after from some stupid virus.  Aaaand, I'm out of Kleenex again.   Sigh.

Here's to a week packed full of appreciated blessings, strengthened connections, intact sanity, and rampant encouragement.  XO.

TGI... F? Really?

How did we get to Friday?  Are we all sure that it is Friday?  If we have consensus, could we have an extra Friday?  Or two?  I could use a thirty hour nap.  I am sick.  Doesn't happen often, but when it hits, it goes for the jugular, man.  And the central nervous system.  I think I can safely pick stuff up and move it around now without accidentally wobbling my tippy self right down the stairs, thank you very much.  Now I'm just your average rotten cold kind of miserable.  Carry Kleenex with you at all times kind of miserable.  But not everyone whisper because mommy will melt if the papers or feet or breathing gets too loud kind of miserable.  Thank heavens.  I am not a patient sick person - too much stuff to do, you know?  That's actually how I can tell if I'm going down for the count - when I don't care about dishes, laundry, trash, etc., and when thinking about those things serves only to help me wish I were just dead, already.  When those things bug me again I am well on my way to recovery.  I must be nearly completely well, then.  Heh.

I have a bunch of nice kids, though.  One brought me soup the other night when I finally couldn't stay upright for another second.  One did a stealth run on clean sheets for me - surprise!  One rubbed my back, one took out trash, one did dishes, one did laundry, two took turns transferring Q, one slept through the night with only the wee-est of whimpers.  See how nice they are?  And no, I do not suddenly have nine children.  They were just that helpful and kind.  Or scared.  I have noticed that they snap right to attention when the mama whispers, "I do not feel well." 

Now that we're on the topic, this is truly one of my greatest fears:  that something could happen to render me not useful to the kids, and being that it's just me in the adult category...  yeah.  Best not to go too far down that primrose path.  Thankfully, other people have been around when I've been most debilitated, or we've managed really, really well on our own.  Back when I was pregnant with Q and then again when he wasn't sleeping, I lined up particular PBS or Discovery shows that correlated directly to history and science topics they were already studying, and I'd crash for part of an hour. Which just proves one of my long-held theories:  Necessity Desperation is the mother of invention.

The Kleenex box is calling.  Hope you have a lovely weekend.  XO.

A little light reading:  article.

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.

Food

So I've been working and reworking the budget in order to be reasonable and attentive and, you know, grown-up.  I've been laboring for some weeks under the idea that I was being extravagant with the amount I was allowing for groceries.  Not so!  According to this table, I'm low.  Even lower than the "thrifty" budget, and by enough to make me feel quite thrifty, indeed.

Hooray for me, she says, tongue planted in cheek. 

FYI

Equal parts of low-fat or non-fat Greek yogurt whipped with cream and a little bit of vanilla sugar makes the nicest accompaniment for nectarines and peaches.  It has a little zip, like creme fraiche, but a ton more protein and less fat and everyone loved it, right down to Q.  Tomorrow we'll be trying it with blackberries and nectarines.  Slurp.  It will be especially tasty because we will be sharing with friends and eating it all outside before and after some hikes.

Last week Q rode in his pack and just loved it.  This week we're going to try it again, for a little while, then try the chair again on the same paths where he laughed the whole mountainside (and all its grinning hikers) silly a couple of years ago.  And we'll be having a vat of homemade potato salad (inspired by the kids' exclamations of delight at their daddy's version and the fact that I haven't made potato salad in at least a couple of years now - hope they like it!), and another of this lovely combination of quinoa, black beans, corn, baby sweet peppers, cilantro, lime, sweet onion, and a splash of EVOO with salt and pepper.  Yum.  Avocado for those who want it.  Then sandwich stuff and fat, juicy tomatoes and cottage cheese, too (summer food).  And lots and lots of water to drink.

I folded four loads of laundry after the kids went to bed, maybe more like five and a half.  I've got one more load to start and then I'm for bed.  I know mamas always say that the laundry is never done (and they're right, unless the kids are nekkid and suspended in stasis), but here, with Master Q keeping us busy, busy!  It needs to keep on moving, or else it would become a hazard.  (shudder)  So down the stairs I go.

Hope you're looking forward to a sweet and restorative weekend with your favorite people.  Or person.  ;o)  And some very tasty food.  XO.

Woohoo!

Another family who was there.  Way to go, kids!

On the Nightstand, annotated version

The Five Languages of Apology, Chapman and Thomas (hard read, when one is looking at oneself)
Praying with the Psalms, Peterson (love Eugene Peterson)
The Myth of Laziness, Levine (haven't started it yet, but loved his "A Mind at a Time")
The Canon: A Whirligig Tour of the Beautiful Basics of Science, Angier  (completely loved her book on women - anatomy and etc., but occasionally find her tone to be smug here)
Getting to Calm: Cool-headed Strategies for Parenting Teens and Tweens, Kastner and Wyatt (very good, this one may remain on the nightstand for the next fifteen years...)
The Art of the Public Grovel: Sexual Sin and Public Confession in America, Bauer  (I'm nowhere near starting this one since we're landing in the next round of studies here, but what a fascinating title, no?  I've so enjoyed her other works, I can't wait to sink into this one - maybe on that cruise I'm planning for two thousand and never...)

I also have The History of the Medieval World (Bauer) to read and I'm feeling terribly guilty about it.  I had received the advance e-version from the author with a promise (mine) to write about it when it released.  I did not (hangs head).  I hadn't finished it and felt, well, as if my gushing wouldn't necessarily add strength to her accolades.  Since I hadn't finished it.  Silly, I know, but there it is.  So I'll go ahead and gush now. 

My kids adore history and it's not just because I constantly talk about how cool it is.  It's not just because we read biographies and encyclopedias, or Genevieve Foster books.  It is in no small part due to the fact that we began reading The Story of the World series almost eight years ago.  (Can that even be right?  Someone tell me if I'm wrong.)  We've been through them all a few times now, and the kids can quote portions of the audiobooks.  They color maps with confidence (from the student pages), and have enjoyed staging a war while painted blue, as Celts, among other fun activities.  We had high hopes when beginning The History of the Ancient World and weren't disappointed.  G made a point of reading short passages to anyone he could get to sit still and he laughed and learned and enjoyed it immensely.  The timelines, maps, photos, footnotes, and well-told anecdotes have so engaged him.  The second book in her series, The History of the Medieval World, has similarly been a delight.  He's not quite into it yet, but I'm enjoying it thoroughly and he will too.  After all, history is cool.

Go buy the book - or books.  Could be that you personally aren't teaching children but haven't had a tour through a good history tome lately.  Shoo.  Find at least one of the series, maybe at your library, read it, and then come back and write comments.  I can't wait to hear what you have to say.

Well

Look at that.  I missed posting the whole month of July.  In fact, it's been two months.  I don't know what to say about that.  Sometimes I look around and realized that two weeks have gone by and I'm not sure how we've all managed to stay upright and in motion and all, and then I remember to check the laundry.  And yes, there's evidence that in fact we have been buzzing around like that.  Heh.  E's been in charge of that department lately and doing a pretty good job of it too.  More likely, at least when school is in full swing, I remember how busy we've been when I note that the grading has begun to pile up.  Good times.

Onward.  We've had a fun summer.  Spent some time on a lovely little island with lovely friends, then hauled off to a family reunion and enjoyed swimming with cousins, and the bigger four spent time with their dad.  Q made his television debut (SO cool), and concerts - including all the kids getting to see HMS Pinafore.  Q loved that too - he stood at the edge of the balcony overlooking the orchestra pit and tried to help out with percussion.  Then we had the best ever not-exactly-VBS week doing art, science, and food projects.  That visiting kids asked if they could come again on Monday for more (there wasn't more), was the surest sign of success.  I'll post the amazing pictures if I'm allowed to (copyright, privacy, etc.).  We're considering writing a curriculum or outline for what we did and selling it.  It was awesome.  And the people were great too - it was a huge bonding experience for the church with nearly a 1:1 adult (volunteer) to kid ratio.  So cool.

Following that fun week, we slept some and then headed out for some family time with auntie and uncle.  That was so cool - we rode horses (ow and hooray - it's been a long time since I learned to jump little logs and fences), saw a fly-in/out of smaller planes (including one restored by boyhood friends of my dad), and spent an afternoon out on a pontoon boat and swimming in lap-pool temperature water.  Chilly!  So Q did not go in, but he loved the wind and sun (but no pink on him, not even tiny freckles) and the boat flag.  He absolutely howled when he had to leave it on the boat - he loves to have those opportunities to be in charge.  Funny guy.

So what's next?

On more general topics, I'm asking for continued prayers regarding the house situation.  Not much to tell right now.  I spent part of today trying to nail down details.  I'll know more later in the month.

Regarding the kids, we're getting ready to start the school year with stacks of fresh workbooks and empty journals and lovely books like "A Rulebook for Arguments."  It's a little bit like climbing on a rollercoaster.  I have one offspring who is looking into a driver's permit (that thud you heard was me fainting), another who wishes to rearrange the planet to make it function better, one who worked her tail off this summer to earn money for something she wanted, and another who is trying desperately to follow in her sister's footsteps and earn her own fun stuff too.

Which brings us to Q.  I'm not sure exactly how his school year is going to work out.  If he were a slightly less complicated kid, I'd have no problem putting him on the little preschool bus and getting him back again a few hours later.  But he's not that kid.  He has to have good positioning in any chair configuration lest his clothing bunch up and begin to threaten the integrity of his skin.  A looser set-up often results in him slumping over and throwing up because his torso sort of collapses without good support (though this is happening less and less frequently).  He doesn't protect his own head like another child his age might, so I'm not sure about sticking him on a bus in his nifty Bingo chair - not enough head support, I think.  Add to that this:  the school district is looking to have PT and OT occur in the classroom, with the other kids, because they want him to be receiving services in the "natural setting," which for a four year old, seems to be a preschool classroom with a bunch of other kids, all of whom have their own issues.  This makes me a little desperate around the edges.  Q loves those other kids and would happily play with them all day, but there will probably be one less aide in the classroom (budget cuts, you know), which means that there's rarely an adult next to him.  Q does not do screamy kids.  Kids with developmental issues often have screamy issues.  Heck, smaller kids of the more regular variety often have screamy behaviors.  Q cannot get away.  So if he's stuck there, can't defend himself, hasn't the adult help he needs unless there's a 1:1 therapy situation happening - then what?  He comes home fried and doesn't want to go back because it's gone from fun times learning with the therapists and playing sometimes with the kids, to dreading the intensity of the not good parts.  I've seen him flinch at the sound of particular voices after repeat exposure to those persons being unpleasant (yelling is a very bad thing, but screaming and whining just plain sets. him. off.), and I do not want to go there.  So at the very least, there's more to learn before we know exactly what will occur for him.  I'm going to push, though, for more 1:1 therapy time and less classroom therapy time.  Both are certainly useful, but the former is vastly more useful to Q.  And since he's my concern, and not protocol or format or classroom needs, well, we'll see how this works out.

The boy has grown completely out of the stander he's had.  His hiney sticks out as he tries to fold himself down to the tray so he can get to the bowl of dried beans or whatever else is there.  So that particular loaned item will go back to the therapy unit, all cleaned up and shiny.  Tuesday next the lovely PT and the miraculous Guy Who Can Modify All Things will be holding a council on whether or not we're going to be ordering a SN car seat, a new Rifton walker/gait trainer (how can he have grown out of everything at once and so fast?), and when we should be thinking about getting ready to deal with planning for a new wheelchair - it will take about six months from the time we begin the paperwork.  And his AFOs need replacing, a process which begins with tracing the outline of his feet, on Tuesday.  He needs hand splints too, which we'll address the thirty-first with the every other week OT appointment.  Which brings me to what a shortage there is of pediatric therapists, in case anyone is considering a career change.  Q needs to have OT at least weekly, twice or three times a week would be of clear benefit to the boy, but two or three times a month is what's available.  Argh.

Communication devices.  Not much headway.  The episodic SLP guy needs more footage of Q using the device he wants to order before he can write it up to justify for coverage, a process which takes about three months.  I'm seriously considering the iPad, mostly because it's a fourth of the cost of the specialty equipment, but also because it just seems that much more flexible and effective for Q.  Give him a splint to support the extension of his index fingers, and we're off and running.  Just like that.  But it won't be covered.

We are increasing Baclofen with two more weeks to go before Q is at the maintenance dose.  I think it's working for him.  He seems to be making gains in real muscle tissue as opposed to having those tiny, bird-like legs that one often sees in kids with CP or other particular muscle issues.  When I work on his legs, there's definitely more mass there to stretch.  I noticed about a month ago that he has actual lats, a nice change - now to access the other parts.  His swallowing is better on the Baclofen too - better oral motor skill, use of lips, far less excessive tone, more appropriate swallowing and coughing, less spluttering or near-aspirating.  I would so love for someone to produce an accurate dosing system that would circumvent the need to implant a pump, though we'll certainly be looking at that as the best option, given what's out there.

And it's time to get the eyes checked again.  All ten of 'em.  That's a whole morning's activity!

On that happy note, I do believe the boy is asleep (he napped after swimming therapy today) so I'm going to go crash too.  I'll leave you with the verse from the wildly successful not-VBS week.  (Can I get an Amen?)

Taste and see that the Lord is good.
Psalm 34:8

XO.

Happy Father's Day

Bruce Feiler has an especially compelling story to share this day.  Once there, watch his TED talk and read his piece on Daddy bashing.

Rob Rummel-Hudson's book, Schuyler's Monster, tells the story of a family walking an unexpected path.  They're in the thick of it still and he has excellent thoughts on fathering.

Randy Pausch passed away nearly two years ago.  He remains a giant in the category of dads.  If you haven't already seen it, his "Last Lecture" at Carnegie Mellon is worth your time - scroll down once you're there.

Each of these men is a little larger than life because (in my opinion) of their ability and willingness to be articulate about things so large and heavy as to be nearly unbearable and unfathomable.  Which is the secret, I think, of good dads everywhere, most of whom are carrying on quietly and couldn't care less about anything but their families: showing up is the thing.  Bringing your A game even if you have to make it up with spit and baling twine.  If the A game is unavailable, whatever one has is brought and the rest is sheer force of will.  The desire to really be there informs their speech and thought and other relationships.  And we are all infinitely better for it.

(Rob inspired me.  Good moms work at being so, and I'm inferring, based on Rob's comments about parents, that good dads do too.  I think there's plenty of evidence to support this notion, but as you may have noticed, I'm not a dad, so it's still an assumption on my part.)

A cheer for good daddies, then.  And you should probably go hug yours.

XO.

Well, hello there

Shall I begin another post by discussing how busy we are? How about I just post a typical schedule...

Sundays - Projects, yard work, lesson planning, groceries, etc.
Mondays - School, E's voice lesson (she's trading babysitting for voice), sometimes medical appointments. But mostly lots of school.
Tuesdays - Q has PT, Speech and OT in the morning. G has OT at the same time; when needed, ortho appointments follow therapies. The girls are usually doing workbooks, watching videos, or cleaning their room while the boys are busy. G reads copious amounts of History while waiting for Q. After lunch we head out to violin/art. Usually there's time for Latin and/or etc. after.
Wednesdays - K has just one more early morning PT session (wahoo). Piano in the morning for the older four (schoolwork for whomever isn't actually in a lesson), during which Q heads to preschool for an hour of either OT or PT, alternating weeks. Afternoon = school.
Thursdays - Q goes to preschool in the morning because there are fewer children in the classroom on Thursdays which means less germs. He has 20 minutes of Speech while at preschool. Schoolschoolschool for the rest of us.
Fridays - morning involves some organizational time for the household before Q has PT (usually in the pool, he's hilarious). Afternoon = library, school, more readying for the full day to follow.
Saturdays - Busy. We've had a play, choir, orchestra, platform duties, potluck involvement, Improv classes, and now rocket building, as well as game nights and more. This means packing along three meals for Q and usually one plus a snack or two for the rest of us as well. Changes of clothes, coloring books, stuff to read en route, and more, bagged up and ready to haul. We love our church. And we are always glad to hit the sack by bedtime. The summer will be a nice break from the crazy-busy Sabbaths - we're planning to do a little hiking (pack adjustments should let me carry Q one more season).

So that's how we spend our time during the weeks around here. We usually have about an hour, sometimes ninety minutes on violin every day, plus roughly half an hour per kid on piano (though K often puts in an hour a day), plus PEGS (chore chart) and schoolwork. We get most of the actual schoolwork done with long days on most Mondays and Thursdays, with the rest spread out between obligations on the remaining two and a half-ish days. So far, they're pretty voracious readers, so taking them into the library is a must (and sometimes feels like inviting locusts into a wheat field).

Q gets at least half an hour, often up to two, in his stander in the morning, and in his walker (with leg splints) in the afternoon, if we're at home. If we're out (museum, etc.), he can be held upright with a hand towel around his chest, under his arms, and supported well enough to be mildly ambulatory, depending on how driven he is to get to the next thing. The goal is to have plenty of time in a standing weight-bearing position to deepen his hip sockets as well as to help him to have early experiences in trying to be mobile.

Lately, (since last fall) we've been attempting to get out and walk/run a few times a week. Three times in a week is good. Five is pretty miraculous, but does occur sometimes. Six would be thrilling, for me anyway. Q seems to benefit from the head bobbing motions when the chair shimmies, though it seems uncomfortable to me when I'm watching/pushing.

The bumps on walks/runs seem to have more or less the same effect as the e-stim Q receives in PT. I've contemplated asking insurance for an e-stim unit to use at home, but I'm having trouble imagining folding one more thing into a day around here. Even a small thing. I know the muscle groups well enough to target them and put the leads on correctly and quickly and I'd feel confident about that. It would be great for him to have that concurrently to his time upright. And the research is spotty/contradictory, even though his PT feels like we're seeing some changes in Q, and I think they're lasting as long as 48 hours after treatment. Chasing my tail here, as with some other things for him.

We're about to add potty training into the mix. Perhaps as early as this coming week. The pharmacy just needs to deliver the system and we'll be busy with that. Wheee!!!

One day they will all be grown up. It seems hard to believe and yet so close. I'm hoping that we're making some good memories, working hard (we should talk sometime about the correlation between neuroplasticity and effort) and playing well. I'm hoping that with all we've invested in, they're growing in faith and stature, character and ability. Parenting is such a marathon, no?

Hope you're looking forward to a peaceful and restorative weekend. May you rest well and arise blessed. XO.

Fondly

A beloved relative died last week. She's technically not "mine" anymore, though it's difficult not to think of her as related. She had a way of showing up at just the right time, bearing potato salad or spinach salad for myself and someone else, or introducing my kids to "hot dog soup" -- which has become their all time favorite quick meal. She once hung a shopping bag off the front door knob, with lovely jammies for me inside it. It was just because she knew exactly what it was to be in my shoes - missing my very busy med student hubby, on a tighter than tight budget, mom to a bunch of little kids. She brought her world famous enchiladas to someone's graduation dinner. Too much going on, trying to make that weekend a great one, and I just never did sit down long enough to get to the enchiladas, though I'd been drooling a little at the thought of them since she'd offered to bring them months before.

She commented to me once that watching me with Q was like watching one-to-one nursing care, 24/7. She was suspicious of Veggie Tales ("Can talking vegetables really be a good influence on young children?" Ha!) and unfailingly gentle and engaged with little ones - loving on Q and getting him to burble to her, and bringing toddler G the Good Dog, Carl book when she realized that he might be afraid of their large dog. We loved that book, just about to pieces.

I so admired her for who she was: a fierce mama to her kids, whip-smart, wickedly funny, kind, insightful, a touchstone for her husband, a loyal and attentive friend, widely read, loving, and able to throw snark with champions. It seems brutally unfair that such a person should be gone from her family, her life, from the lives of the people who loved her so. I'm sad and fairly weepy.

I have good stuff to share about the more current doings here, but that will have to be later. We've such cool things happening at church this weekend, and I've got to go blow my nose a few more times before hitting the sack so we can be ready for the morning. For goodness sakes, love on the people you find to be important to you. Really.

XO.

Ups and downs

So remember how I'm not freaking out? I may need better skills in that area. I've been looking at houses, working on getting qualified for a creative loan situation that would be augmented with grants from a county program that works to help families which include a member with a developmental disability to own their own homes. The idea being that it's nearly impossible for families to achieve this when often one parent really must not work in order to accomplish what must be done to keep the group on the rails, especially in the case of the person who is disabled. (And trying to communicate this to the general public can be nearly impossible.)

I'm wondering if I just should not be contemplating this. I've run a gazillion budgets and they work. It would be tight, but we could manage if I can find that miracle house - a foreclosure in good shape with lots of room, perhaps even with some modifications already present, at a low enough price to make the payments about half of what I'd "qualify" for (can we say Dave Ramsey?). I thought I'd found one that met that criteria, including exterior ramps and a room that could potentially let me work two or three hours a week from home, but it already has an offer on it. If I had an extra hundred thousand floating around, there'd be no problem finding a perfectly adequate house, but my price range throws a monkey wrench in for sure. Of course, even then, the chances of not needing to modify bathrooms, etc., are pretty slim.

Other things that make me go hmmm about all this? It seems crazy to try and be in a house away from other adults, given that the kids aren't exactly ready to leave home yet and Q sometimes needs supervision just so I can shower. What if I get sick? What if for some reason I needed to carry the entire monthly budget myself? I could stop driving places, then scale way back by cancelling everything but groceries and utilities. Of course, on can't cancel a mortgage. What if, what if, what if...

It's making me a little crazy. In part because - good news! - Q's well on his way to getting his potty system. The letter from the pediatrician has arrived at the therapy unit and will soon be on it's way, along with another ream of supporting documentation, to the pharmacy. And then we wait. And look for some way to fit it all in here, or find a place that can either fit it into an existing (probably modified) bathroom, or can be easily and inexpensively modified to make it so. Also? I'm ready to look at acquiring the rolling base for his bath seat. He's nearing 35 pounds and is quite the slippery fish when he's wet. It's getting harder to wrangle him in and out of the tub. But then I need a place to use that rolling base...

I think you see how this loops. It's a hamster wheel in my brain and I'm about at my wit's end. I'm seriously thinking about keeping the kids and I on some sort of "European Traveller" wardrobe plan. In other words - your collection of clothing consists pretty much of what you can fit in your (not tiny) backpack. Coordinating neutrals, baby. With maybe one nice red sweater thrown in. Two, maybe three pairs of shoes, max, including espadrilles and hiking boots. And viola - we'd fit happily into a veritable crackerbox. As long as it has windows and more than one bathroom - so I can get one fixed up to accomodate Mr. Q. Of course, this version of The Grand Plan falls apart when I remember the amount of laundry that Q generates all by himself and that I don't currently own a washer/dryer set. And that washer/dryer sets cost, you know, money...

About the other equipment Q needs - now I'm wondering how we'll manage to nail down the communication device in a timely fashion. So much of Q's developmental needs are defined not by what will best suit him, but by what can be justified to the insurance folks or how we need to time the requests for the expensive items in order to get a positive response. This galls me no end. For a kid who seemed to identify colors and letters last spring/summer, we sure aren't any closer to pulling off a device for him to keep at home, much less one he has access to for more than minutes out of a week. Even then, figuring out which particular thing will best suit him is sort of agony. Are his fine motor skills at their peak today? That indicates option A. Are they lacking today? That indicates B. How about head control? Good? Option C. Not great? D. Awful? E. Eye gaze - tracking good? F. Tracking hard to obtain/sustain? G. How vocal is he? H? I? J? Can he approach the midline with his hands/arms more or less than at our last visit? K, L, M, or option WW, perhaps. And will you be able to build your own flibberty-dooble attachment to go with your eventual choice of $20K equipment? If not, you should consider our triple A model. And good luck getting that covered, because it may or may not be something that applies too broadly for use by the general public. Touch screen computers, while roughly one thousandth the price of the specially designed speech equipment, are therefore disqualified. Boggles the brain, really.

Not that an iTouch or iPad (or the ilk) would remotely answer everything that the big shiny boxes of words do, but if the big and shiny is out of reach, then the less expensive option should at least be considered, for crying out loud.

Anyhoo. I'm frustrated and probably in desperate need of a run. I'm feeling that thing - about being in charge of outcomes where I don't really have say in the process, just the accountability for the eventual result. It's kind of enough, already.

Q's out so I'm heading to bed so I can increase my odds of having a shower before church in the morning. Hope your prospects for a truly, down to your soul, restorative weekend are good and getting better. Enjoy. XO.

Head banging

Where to begin? Q needs some expensive stuff.

The list:
A sort of mobile walker/stander/supporter thingy that allows him just enough movement so he can get into trouble (as any four year old would like to).
A potty system (he's dry over most nights) that supports him sufficiently in a good position.
A "voice" - via an augmentative communication device of some sort which is likely to be about $17,000 all by itself.

I would dearly love to also have some sort of bike trailer that converts to a good jogger/stroller. It's tough to run with Q in his Bingo - the poor thing shimmies badly on the slightest variation in a surface.

So I'll leave you to contemplate this part. There's more, but I'm tired as well as stymied so I'll be back to discuss further.

Stuff and things

Increasing Number Of Parents Opting To Have Children School-Homed (Snort)

The Boys Have Fallen Behind


"...self-esteem encourages emotional incontinence..."

Game changing brain change.

Anthem

Warning - turn your volume down unless you like very noisy music. Sort of loud and hard-ish rock, maybe. Lyrics below in case you don't wish to listen.

Anthem, Superchick
Here's to the ones who don't give up
Here's to the ones who don't give up
Here's to the ones who don't give up
This is your anthem
Get your hands up

We are fire inside
We are lipstick and cleats
We are not going home
And we are playin for keeps
We are girls who skin knees
We are concrete and grace
We are not what you think
Can't keep us in our place

Here's to the girls on their boards with bruises and scars
Here's to the girls whose fingers bleed from playing guitar
Here's to anyone who never quit when things got hard
You'll never let them say
"You'll never get that far."
"Never get that far."
"Never get that far."

We are fire inside
We are an army asleep
We are a people awaking to follow their dreams
We don't have time for your games
We have our own goals to score
There are trophies to win
Instead of being one of yours

Here's to the girls on their boards with bruises and scars
Here's to the girls whose fingers bleed from playing guitar
Here's to anyone who never quit when things got hard
You'll never let them say
"You'll never get that far."
"You'll never get that far."

Here's to the ones who don't give up (x3)
This is your anthem (anthem, anthem, anthem, anthem)

Here's to the girls on their boards with bruises and scars
Here's to the girls whose fingers bleed from playing guitar
Here's to anyone who never quit when things got hard
You'll never let them say
"You'll never get that far."
"Never get that far."


Phew. Better now. You know, I work my tail off at my gig. I'm sure there a thousand things and ways I could be doing it better, but most days I'm giving it all I've got plus bits and pieces I didn't know I had. I read incessantly about my "job," do self and other directed CE hours (sometimes literally, others more casually), and make it my business to know my kids, their issues, and what I'm talking about regarding them. Most of the time, this whole process is a positive feedback loop, providing way cool interactions with the punkins (I'm so blessed), endless teaching scenarios (for each of us, myself especially), and adding fuel to my tank so I can get up and do it all over again. There are moments, though, when I just feel like it doesn't matter what I throw down, what fresh things I can dig up and bring, it's just a losing proposition. Had some of those lately.

Very fabulous, and also some not so great news on the extended family front, plus big decisions to make in places where I'm in charge but most of "it" is really out of my control. Add in the fact that the kids are looped out of their ever-lovin' gourds because they get to see Daddy tomorrow, and yes, I have a little tiny sprout of a headache. And I've been weepy most of the day. The week. Whatever. Nice hymns to sing? Welling up. People coming together to create beauty? Sniffle. Dealing with difficult topics as well as druthers that just have no useful place in my head? Sob.

So the music is/was my answer. :o) It's a tad more convenient a catharsis than going skipping in the rain in the dark, seeing that I've got packing to wrap up. I'll be back with more while the big kids are having Daddy time (they are so, SO excited to see him) and Q and I wrangle the ongoing wretched computer issues (sob) and look for other ways to entertain ourselves.

From the day: E was in the bathroom and her sisters and I needed the nail polish out of there so we could do all forty fingers and toes at bedtime. The sisters became impatient and "shared" that with her. G was passing by during all this and offered up quite calmly and reasonably that, "Fire is always an option." (Insert my puzzled face here) "You know, we could try lighting the door on fire and seeing how long it takes her to come out then." By this point, given the level of angst being generated over the topic, you'd think he'd have found support for his idea. Without missing a beat, S stuck her head back around the corner from the hallway and hissed over her shoulder: "That is completely uncivilized, G." G and I nearly fell over laughing. Quietly.

The softer stuff should be playing by now, if you're thinking about the music. Hope you are well, cherished, and revelling in both of those facts. XO.

So cool

Who's up for a road trip?

Random

I am considering dreadlocks for myself. That's got to be less expensive than regulation hair styles, right? Or perhaps a nice bald head would be an effective option.

I spent four hours at the Children's hospital with Q today. Regular check-up kinds of things that aren't so regular if you have a more or less neuro-typical kidlet. Four vials of blood and hip x-rays he did with no problem, nary a squeak, giggled and entertained the staff throughout, but when we came home and I got out the saline nose drops bottle for his little congested head, he yelled and tried to get away. No kidding. He remembered having the goo sucked out of his sinuses the night before and he was not about to stay put for that kind of repeat assault, let me tell you.

More later, when I'm not about to tip off my chair. XO.

Beautiful

Everyone remembers those moments in which when they just knew. What a sweet, amazing, profound and lovely story. If you've never had that moment, the tale of precious Nella's introduction to the world will grant you insights I don't know how to explain any other way...

Wow.

Happy Heart Day

Hope your day was full of kisses and all manner of good things. I've got this song running through my head these days.

Hold Us Together
Matt Maher
Alive Again

It don't have a job, it don't pay your rent
Won't buy you a home in Beverly Hills
Won't fix your life in five easy steps
Ain't the law of the land or the government

But it's all you need

And Love will hold us together
Make us a shelter to weather the storm
And I'll be my brother's keeper
So the whole world will know we're not alone

It's waiting for you,
Knocking at your door
In the moment of truth
when your heart hits the floor

And you're on your knees

And Love will hold us together
Make us a shelter to weather the storm
And I'll be my brother's keeper
So the whole world will know we're not alone

This is the first day of the rest of your life
This is the first day of the rest of your life
'Cause even in the dark, you can still see the light
It's gonna be alright, it's gonna be alright...

Nice, huh? It's even better with music and it's a nice one for swaying to, if you happen to have someone nearby you'd like to grab and sway with. (Hint. Grab your Someone.)

Q's all snuffly and sick. Thankfully I'm mostly over the dreaded sinus crud, but it's likely to be a long night with the little man. Poor punkin. I've got my fingers crossed for a quick recovery for him, though. Wishing like crazy to avoid steroids this winter.

This week my youngest brother would have been thirty-three. I always wonder how things would be different for our family, who he would be, which of us he'd most resemble, if he'd survived. He was such a sweet little boy and still missed. I held my breath a little as each of my punkins passed the age he was when he died. So. Extra hugs for my mom tomorrow.

Hope you have a lovely and blessed week. "Kiss those babies." -Dy

Three Good Things

Q should be sound asleep by now. I watched him earlier, sliding down into stillness. He patted his Scout toy, which was singing him lullabyes for the sixth time through, and then laid his fat little starfish hand down on the pillow next to his friend Scout's nose. His eyes had been fluttering, but stayed shut during the Brahms lullaby, only to pop open again with a wide grin as he anticipated the music stopping a few notes before it did. When the next piece began, the eyelash frills slowly fell again. When that piece ended, he sighed, but didn't stir again.

He's just beautiful, lying in there with a little round cheek pressed into his pillow, snuggled up to his favorite toy. Watching him tonight, I remembered, for what reason I do not know, telling his papa the story of the Velveteen Rabbit. We were friends at the time, in college, had been out together a couple of times, and were flirting a little over the phone as I finished design projects and he avoided writing something (my grades suffered, his did not). I mentioned the story to him and he confessed to never having heard it, a fact I found somewhat stunning. So, while all splayed out on the floor amongst paper bits and mat boards and glue and x-acto blades, I told him the story. About toys learning lessons, a rabbit becoming Real, and how having one's hair loved off is quite integral to the whole process, allegorically speaking, of course. A few weeks later, he sent me a Christmas card with a bunny on the front, and referenced the story. I was thoroughly charmed.

I'm not spending any time with my head between my knees or breathing into a paper bag. This is very good. I am glad that I'm not. I'm glad that we have a warm place to be when the wind blows and the rain strikes. I'm glad that I know people to be capable of great kindness and have in fact both witnessed and experienced it with some regularity. I'm glad that I have the opportunity to practice letting go of preconceptions, misconceptions, and certain ideas to which I may have become altogether too attached. Mostly though, I'm glad that I don't feel like I need to panic right now, even where it's perhaps more or less warranted, and that I can still make choices right here and right now; one always has the choice of response to one's circumstances, yes? Yes. It is good to have those choices and to be aware of them. (For reference - I might, one day, wish to become some sort of novice in, say, a quiet, monastic setting. Because I imagine that I might eventually need to go somewhere very quiet and just lie still for awhile. It'll be that or the table dancing.)

Trois.

Hey

Between a psycho computer virus and many commitments, it's been a busy week. I'm glad it's moved right on. No sense lingering over K's T7 compression fracture. She was only jumping on the trampoline, nothing more than straight up and down. She's sworn off jumping forever, or at least for the next eight weeks. I'd be fine with her avoiding trampolines forever -- we'll see how that resolution holds.

A friend from church out on a humanitarian endeavor when the initial earthquake hit has finally made it back from Haiti. And another is still on the ground there, working with an orphanage to bring 130+ abandoned children whose adoptions were already in the works back to the US with her. This has been a tough week for surviving victims and their rescuers. I am so glad there are people on this planet who run full-speed toward disaster, taking their skills and whatever supplies they can find along with them. They're working miracles with the equivalent of spit and baling twine as tools. God bless them, all.

Q's Baclofen dosing is progressing. We have another week and a half before it's time to talk with the neurologist about the next stage of dosing. He's fussier in therapies (which is to say, fussy at all), tummy less settled, sleep more difficult. I wonder if he's having some subtle viral or bacterial thing, allergies, or just adjusting to the lessened tone and difficulty in compensating with new muscle. In the meantime, Q needs extra repositioning in the night. I've come to crave and yet resent bed because I'll just have to be getting up again. Silly, but there it is, sleep-deprivation at it's finest.

The kids have choir and orchestra tomorrow and I'm hauling snacks and a bazillion other things in for the group. The alarm is set, Q is finally truly out, and my freshly silvered toes (a little bottle was a Christmas present from K) will make it easier to be perky near sunrise.

We are so blessed. We have this first-world country, decent food and water, people we love within easy reach. Reach out, then, and make sure your people know they are beloved.

XO.