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.