ups and downs

The last couple months have held some serious ups and downs.

Sis's medication seems to be helping her a LOT.  I never thought I'd embrace medication for a child, but she is *that* much better.  Cheery, social, not hiding in her room, willing to do new things, and even snarky in an 11 year old girl way.  She's not walking around with her head down, looking unhappy and hyperfocusing on things that really don't matter.  Bud had a major meltdown today, hitting, screaming, etc.  She said it made her tense. That's it, just tense.  Huge huge step in the right direction.  Thank you, medication and therapy.  I love you both.
Bud's birthday party went magically well.  The kind of well known as "better than I thought humanly possible" well.  We had it at the local nature center, with a fire pit and marshmallows, birdhouse painting, hiking in serious amounts of mud, and nature games.  Fully 1/3 of the kids there (only about 15 kids, gotta keep the numbers low!) had special needs of some kind, and I'll be darned if their issues didn't even affect them in the slightest.  They slogged around in the mud, played games and ate gloppy cupcakes with big smiles on their faces.  It was beautiful.
Bud's hockey team (a hockey program for high function kids with special needs) got to play in between periods at an Indiana Ice (our local professional team) game.  Bud got incredibly nervous, and had a flat out screaming meltdown minutes before the kids took to the ice, but he pulled it together, went out there with his teammates and had a great scrimmage. Ok, when they took a lap around the rink to warm up he skated by the Ice mascot and whacked it in the butt, but that doesn't count.  We ended the night with a family trip to McD's for ice cream.  It was wonderful.
Sis did a fabulous job in her school musical.  She loves musicals, acting and the arts.  I'm really excited that she is going to start acting classes for kids soon.  She's a natural, and I'm thrilled that she's found something that she loves.
We had Bud's case conference for his IEP.  He's been having what the school calls "behavior problems" but thankfully, the psychologist we hired recognizes as complications of having Aspergers and now clinical Anxiety (and she explained this thoroughly at his case conference to the school).  Many, many new supports are being put into place for him, as well as a behavior plan that rewards him for good work.  Anyone else out there who has to deal with IEPs for your children, they're hell to deal with.  You have my utmost sympathy and warmest of good luck vibes.
Sis seems to have grown, again!  She's taller (how much longer til she outgrows me?) and becoming a lovely young lady.  We will have to go clothes shopping for summer- no wearing last year's size for this girl!
Bud is back in a bad sleepwalking cycle.  We finally made a bed for him with a foam mattress on the floor beside our bed and he is sleeping there.  Its not perfect, but if he's sleepwalking a lot, I can just roll out of my side of the bed, down on the mattress with him and hold him all night long a lot easier than trying to sleep with him in his skiiiiiiny twin bed.  I'm really effing tired, bc he gets up and down about every 30 mins starting at about 10 pm and ending at 3:30 (at which point he konks out cold, go figure).  But, I keep telling myself one step at a time and drinking mass amounts of coffee to get through the day.  I read that a recent study showed that coffee consumption made you less likely to develop type II diabetes.  See?  I'm contributing to my health by drinking coffee, really!!
And that's about it.  Thankfully.  Its enough.  That's for damned sure.  So, good night, and I'm off to either practice meditation or eat junk food.  Beats me which.  I'll figure it out when I open the pantry door and see whether we've run out of chips.  In the meantime....ohmmmmmmm

Neutral

I went to the library today.  I love the library.  The quiet, sun slanting through the windows, and the rows and rows of books.  God I love the rows of books.  I can just glide through them, picking something at will to read about.  Gardening in small spaces?  Mmmmm... such nice large photos.  Zeppelin disasters of the past century?  Not my thing, but pretty fascinating that someone came up with the idea to make a giant dirigible, fill it with massively flammable gas and then convince people to float around the countryside in it.  Raising Siamese cats, vampire fiction, videos about cheese making... the possibilities are endless.

So, I picked up a few things, found a nice loveseat to park my ever spreading butt on, and sat down to read.

For a while I was caught up in my book, an autobiography.  But my attention kept getting caught by cars driving by the window.  I was sitting right next to the drive up lane for the book return drop box.  If you were going to drop a book off without getting out of your car, you had to drive right by me.  About 12 feet away, and I could see straight into your car (think about that the next time you drop off a book at your library - there may be a 40 year old woman staring into your car.  Creepy, isn't it?)

The first few times, I just glanced up, blinked, and went back to my book.  After about the 5th car, I did a double take.  The same woman had driven by 5 times.  I sat and watched for a while.  No wait, it wasn't actually the same woman in the same car.  But it might as well have been.  Everyone that drove through that lane looked alike.  There were only 2 varieties of vehicle (sedan or suv, in muted colors), 2 varieties of person (male or female, but all members of each gender were dressed almost exactly the same and had the same haircut), and the contents of the car looked alike (books placed exactly so on passenger seat, upright purse of same size if driven by a woman, carefully draped coat if a man).  The cars were all washed, clean, and about the same age.  Everyone was, well, neutral.  It was effing creepy.  I felt like I had been dropped into zombie world.  It made me appreciate my messy, dirty car (although yes it is technically an suv, although a small one) and the crap strewn haphazardly all over the back seat, as well as the fingerprints and dog noseprints in the windows.

I'm not saying that its like this everywhere, but here in the burbs, where the schools are good and the crime is low, its well, "neutral."  Everyone looks the same, drives the same car, dresses the same, and acts in the same nice reserved Midwestern manner. They all live in the same tan house and get their decorating ideas out of the Pottery Barn catalog.  All the women are taking the same soothing medicine and have the same patient smile.  They're sweet.  You have the same predictable, limited conversation with everyone and they smile the same smile.  Like I said, its creepy.  It makes me want to wear leather and studs, dye my dog rainbow colors and shave my head. Well, maybe not- I think I've passed the leather and studs age, don't want to piss my dog off and its too damned cold here in winter to shave my head.  Oh well.  I guess I'll just keep my messy car and be proud of that.

When I look at these people, who all match each other so carefully, and I wonder if they feel alive.  Not "do they feel like they're living" but do they really, truly feel *alive*?  Purposeful? What are they living for, or moving toward?  A nice car, the right purse and a haircut appropriate for the business world?  Sending their kids to the right college and having a perfect retirement account or golf score?  Does it make them feel alive to become a connoiseur of (fill in the blank- antique glass, comic books, badminton equipment...) and develop a fabulous collection?  Maybe it does.  Maybe I'm the nut.  Its definitely possible.  Probably, really.

Or are one day they going to say to themselves that maybe, just maybe its all a distraction from life.  I wonder if they used to have tye dye shirts, or mohawks.  If they sat around the campfire looking at the people wearing suits and the soccer moms and said "yeah, just shoot me if I end up like that-those people are dead" or if they always had their eyes on the prize- the brand name clothing, midlife crisis car and the mcmansion ("hey, I had to grow up poor and now I'm showing everybody that I've made it!"  Did you really?  Made what?)  Gripe gripe gripe

I think that having a different life experience from many of these people has been a blessing.  Not having a family that resembles Leave it to Beaver or The Brady Bunch.  It would've been so easy to overfocus on all these things that didn't matter for the kids- their grades, whether they wore seasonally appropriate clothing, eating precisely healthy food, making sure they went to summer camps that would give them good learning experiences, exact bedtimes, keeping a clean house....  All the things I'd planned on thinking about to make sure my kids turned out perfect.  Proving that I was a perfect mom.  And overfocusing on the things that consume so many people's lives- the decorated home, parties, right career... etc.   I don't have that need anymore.  I spent too many years in survival mode and can see right past the clutter.  Its not that you have to give up everything and try to live like a monastic (I love my new Kindle for example, thank you honey!) or that you can't work hard and succeed at a career, take medication if you need it to function, or enjoy collecting bird feathers.  Those things can be necessary.  But, I just want this reminder for myself appreciate the gift of insight my unique and peculiar family has given me and to not to lose my soul and become like the zombie library patrons.

The Morning After

Well, we've passed Medication Eve and now its The Morning After.

Sounds like some kind of mutated version of the Christmas holidays, doesn't it?  Yeh, well, it feels like it too.  Its the one where the Grinch's heart didn't grow 3 sizes and he kept all the Who presents.  Its the one where Scrooge decided where things were just fine in his life, after all.  And where instead of my daughter getting better with therapy and time, she needs medication that will affect her brain chemistry.  So, last night, for the first time, she started on an anxiety medication.  That was Medication Eve.  And now its The Morning After.

Starting your child on medication is a really difficult decision.  You try everything, exhaust all other resources, therapies, diets, etc.  They all work for a while.  You feel hopeful at first.  Start a new therapy and things start to turn around.  But then they turn right back, and anxiety, the obsessions and compulsions take over again.    And so you finally come to the conclusion that the only thing left is the medication.  And so, you research like mad, and drown in guilt over the potential horrible side effects and the unknown future.  The last resort is now the only resort.  Right now, I don't want to think about all that.

But I do want to think about what I hope she'll be leaving behind, once the anxiety medication builds up in her system and starts working.  Fears.  Irrational ones that she can't articulate, but can't let go of either.  Strange compulsions that she has to perform, the obsession with odd thoughts.  Her desire to just stay in her room with a book and read old and familiar books, since there's no risk involved. Crying at the drop of a hat, or for no reason at all.  I could go on.  I want to see her leave all those things behind, and live freely, and joyfully, like a kid her age should be able to do.  I want to say "hey Sis, lets go out and......"  and have the answer be a smiling "yes!  cool!"  instead of anxiety and fear.

And so I'm praying.  Please let this medication do those things for her.  Or help her head back in the direction of living the life she deserves.  Let her feel life instead of fear it.

I'm going to drive to work now, and turn up the cd player in my car so loud that my bones shake.  That helps, somehow.  Maybe some Mumford & Sons, awesome hard driving music.

Please let it work.

Be Careful What You Wish For

Ok, when I wrote my last post that what I wanted most was to want to wake up from my sleep rather than wishing I could drift right back off.

Well, I got my wish.

Only it didn't happen exactly the way I'd envisioned.  I was kind of planning on things being that much better in my life. I'd want to wake up quickly with a zippy smile on my face, delighted to face the day.  That was my plan.

Well, be careful what you wish for.

First, it started with Bud's waking up at 4 am one morning, cranky and wild.  He was feeling agitated, and dammit he wanted my attention.  He couldn't drift off back to sleep, and wasn't interested in trying.  If I tried to snooze off myself, he woke me up, complaining loudly and beating things around.  I did drift off a couple times, but the way he shocked me awake was so obnoxious, it became easier to stay awake.  Day 1 of not wanting to go right back to sleep soon as I woke.

The next day, it was the return of his sleepwalking.  It goes in phases.  And you never know when it will pop up again.  It had been months since he last sleepwalked, so it came out of the blue.  This time, he made it past 2 gates and a dog, downstairs to curl up on a chair.  I picked him up, brought him back upstairs, tucked him in, and went to sleep on the floor next to his bed.  I of course didn't sleep well on said floor, waking at the slightest sound to check and see if he was on the move.  He flipped around like an orca in his bed all night long.  The next day we added more door alarms and locks to the exterior doors, and an extra holding clip to the baby gate on the stairs.  (think already "locked up like fort knox" but now extra).  His dad was a major sleepwalker until he was about 12 years old.  Not the "sleepwalk to the fridge, make a baloney sandwich and not remember eating it in the morning" type of sleepwalking, think instead the "get out of the house through a deadbolt and chain lock and screen door lock and walk to the neighbors house in the snow without anyone realizing you left the house"  kind of sleepwalking.  The scary kind.  Which Bud seems to have inherited.  Thus, the locks, gates, window alarms etc.  And need to for mom to sleep lightly and be up like a shot to intercept him.  So, the next couple nights I slept on his floor, he'd wake periodically throughout the night, and I'd take him to the potty and stuff him back in bed.  That's 3 more nights of not wanting to drift right back off to sleep.  Got to be able to wake instantly and get moving.

Then one peaceful night.

It was lovely.
I caught up with all my lost sleep and then some.
I was ready to go back to drifty dreamland.
Looking forward to it like nobody's business.

Ha.

The next night Bud got diarrhea.  All. Night. Long.  The exploding kind.  The kind where you'd better be on alert next to the bed to haul his hiney to the toilet or it will be all over the floor kind.  Which it was.  No wanting to drift off to sleep that night.  Drift off to sleep = poocano (that's a new word, poop+volcano, like it?)

And the next night was projectile vomit night.

Then screaming gas pain night.

And last night was back to projectile vomit night.

Tonight?  All I know is that drifting back off to sleep means bad bad things.  I'm cured.  Don't want it anymore.  Seriously.  Regular sleep is just fine with me.  I appreciate the ability to pop wide awake at a moment's notice and stay that way.  I mean it.  No drifting-off-to-sleep-wanting-to-avoid-life going on here.  Nope.

So God, Universe, Mother Nature....anyone else out there who's listening.  I got your point.  You can stop now, anytime.  Really.  Screaming, followed by sleepwalking, followed by viral nasty...  what's next?  I'm sharper than those 10 Plagues of Egypt folks. You can skip the next 7, because I get the point of the first 3...

So yeah, I guess there is a moral to this poop-filled, vomit-covered, sleep-deprived story:  Be careful what you wish for, because you just might get it.  And its non-returnable (and not to mention, might make your house smell like regurgitated garlic bread)

my resolution

Here is what I want right now, pure and simple, entire.

I hope to attain this one thing this year, and nothing more.  Just this.

I want to wake up from every nap, every dream, every nightmare, and not wish I could go right back to sleep again.  Because its the most wretched feeling I've ever had.  I think its probably a normal feeling for a sn mom.  It comes and goes.  A psychologist could probably plot it somewhere on a wall map of the grief cycle using a chipped plastic thumb tack, the tall kind.  I don't really care what it is, or where it belongs.  I just want it to go away.  I want to drift into wakefulness, the realization of where and when I am, and truly want to leave the werewolves I was just being chased by behind.

That's it.  Nothing more.

I do have a game plan.  We'll see if it works or not.

The main component is taking a moment each day to focus on something.  Really focus.  Let everything else go.  I started with plants. I went out into the back yard, picked a spot on the ground, and just studied it.  The colors of the blades of grass.  Their jagged edges, roots holding tight to the earth, jutting over clumps of dirt. I touched the soil, smelled it, rubbed it on my fingertips long enough that it settled into the valleys in my fingerprints and brought the pattern out.

The next day it was rain.  I watched it crash and shatter into my window screens and run down the glass.

Then a rock from my front yard.  Beautiful colors, ground surface, and a metallic smell.

And today, I concentrated on snow.  I was driving down the roadway, dry powder snow sleeting down and being windblown sideways, creating a neverending snowflake argyle pattern in the air in front of my car.  Flat drifts blowing across the pavement.  The sky was gray and white, snow everywhere, hurtling past me as I drove.  And it was damned cold, outside.  Twenty degrees, with the wind blowing sideways.  And there were birds out flying, their wings raised high, feathers spread wide and they fought their way through the air to cross the road.

Jet black birds.
White snow.
And nothing else.

And nothing else.  It was just me, and the cold, and the snow, and the birds.  And it was beautiful.  So damned beautiful.  Tears were rolling down my face. And I was consumed by nothing else but this weird feeling, a razor's edge between peace and pain.

I could wake up every day from a good dream for 5 minutes of that.  Because that's the feeling of being alive, and being one with God and the Universe and even those stupid effing birds that really ought to be sitting on a limb on their stupid little frozen bird legs with their feathers puffed out, trying to keep warm but are instead flying across the state of Indiana in a snow storm.  God bless you, birds.  And thank you for that moment.

Holidays

The holidays.

I survived them.

If you have an asd/aspergers kid, you probably know what I'm talking about.  Holidays aren't easy because they involve Change.  Yep, the big "C" word.  Your house looks different (something about a big tree taking up a large amount of space in your living room and the exterior covered with blinking lights...), there's pressure to behave for Santa (didn't happen...the behaving, not the Santa- he came and dropped off plenty of gifts despite the behavior), school parties, church pageants, not having the routine of school when you should, etc.  He also was fighting a strep infection, that gave him hives and itching at random times, parents hauling him off to the doctor, blood tests, medicine.  Add that that to the disruption to his routine that happens every December...

I'm certain Bud really did try hard to manage himself.  He really did try.  I could see it in his movements, hear it in his words.  The tightness, the controlled speech, the agitation.  He sincerely was trying.  Sometimes it worked.  And sometimes he just lost it.  Loudly, violently, horribly.  He's the only 7 year old I've ever seen to try to beat the shit out of professional hockey players with a stick.  (he decided he didn't want to cooperate at hockey practice and went after the coaches - fortunately its a special needs program so the coaches were quite forgiving, all former professional hockey players, and some the parents of SN kids themselves)

But its over with now.  Personally, I'm still trying to blot out the meltdowns, verbal and physical aggression, all the good stuff that goes with the disorder- I guess time will heal.  In a few years I'll be able to look back and laugh, or maybe even not remember it at all.  Right now its more like looking through the neck of an antique bottle just dug out of the ground.  Its dirty, crusted over, smells funny, and I can see the scenes playing out before me at the bottom of the bottle, enclosed and tiny.  They're down there, safely contained in a place that I can't reach except by poking a stick down through the neck.  Its better to keep them there right now, safer.  If I were to choose the stick, stir them, shake the bottle, then I'd have to relive them again.  I'm corking the bottle and sitting it up on a shelf for a while.  I just don't have the strength right now.  Someday.

As for Sis, she did remarkably well.  A few crying jags when things didn't go her way, but remarkably well.  I was thankful.  She'd growing up.  I don't mean that she's outgrowing the anxiety, or the OCD.  She's not.  She's managing it.  I mean she's growing up physically, mentally, emotionally.  Outgrowing her 'little girlness' and coming into her young self.  She's reading books with social meaning, finding new hobbies (even trying out for the school musical, an idea she came up with on her own, yes!), and even growing physically (something mom recognized when I did laundry the other day and realized her shirts were almost the same size as mine!).

Overall the holidays get a little more fun, and a little more smooth every year.  And I enjoy them a little more.  There was a black period for several years where it was nothing short of horrible.  But that time is over now and I am able to uncork the bottles from those years, and look inside (for example, one year:  you know how spectrum kids often spin things?  Ask me about why we had to gate off the entire family room bc Bud kept spinning the entire tree on its base.  Yes, folks, its possible, give it a try sometime.  Imagine a 3 year old clutching a branch of the tree and running around the tree in circles with it, watching ornaments fly off and crash into the wall.  He may not have been able to talk, but by golly he could run like the wind and see the fun in everyday objects... LOL)

Check in with me next year, and I'll tell you about Christmas 2011 with a smile on my face.

Thankful

Ok, so here's my list of Things to Be Thankful For (don't worry, I won't go too sappy, nor will I put anything fake on there just to make myself look more hip- I'm too tired for fake most of the time)

Coffee, the good kind
Chocolate, "  "
Bear hugs from my kids, the kind that almost knock you over
A roof over my head
Enough food
Elvis
An interesting job, where, quite literally, there truly never is a dull moment
fall leaves turning color
spring flower
the first snowfall
winter ending and new green leaves
good health
Saturday morning cartoons
good books
paint by numbers
my husband and children
my parents
my church
old timey metal pencil sharpeners
velcro
down comforters
golden retrievers (and the therapy they bring)
good dirt, especially with worms
friends
trees
npr and pbs
people who give a damn
toys
gourds
light through stained glass in a window
flowers
walks in the woods
the Grace of God
moments of peace and meditation
more coffee
more chocolate
and more good books