Saturday, November 27, 2010

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.

Saturday, November 20, 2010

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.

Saturday, November 13, 2010

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.

Saturday, November 06, 2010

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.

Friday, October 29, 2010

Word

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

Saturday, October 23, 2010

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.

Monday, October 18, 2010

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.