Friday, April 29, 2016

In search of a square hole...

When you spend a lifetime hearing how your son isn't smart enough, healthy enough, tall enough, heavy enough, good enough; for basically any program or class or environment you come into contact with; you really do just become numb to the entire process.  It's not something you allow yourself to be hurt by anymore.  Because the situation is basically static.  Even though young brains are 'plastic', they like to say, there are some things that are just not going to be fixed.  Enlarged ventricles, for example.  Microcephaly.  Polymicrogyria.  Thinning of the corpus callosum.  Those things are fantastic malformations.  Permanent.  There to stay.  Lots has to go wrong for those things to occur.  Generally speaking, even a hard core alcoholic or drug addict can avoid having a kid whose brain contorts like that.  But somehow, we managed.  Due to him not being diagnosed yet, we don't know why.  But someday, we will.  Most of his docs still feel it's genetic.  So they feel answers will be forthcoming as science catches up.  (Oh, to not be a trailblazer.). I've spent hours staring at images of his brain.  Marveling at the multitude of mistakes that were made during development.  Wondering how I could not have known all that was going wrong inside of me at that moment.  I've read tons of journal articles about each specific problem...(while stopping every fourth word to look up the words I don't know the meaning of) and have read enough to know that there's not going to be a major scientific breakthrough that's going to 'fix' our son.  This, right now, is how he's going to be.  Of course, I'll always believe we are all able to learn.  Every single one of us.  And I will never give up on him.  As long as I am breathing.  So I will try to teach him and help him and further his abilities until I am boxed.  But all the while with the knowledge of those scans and those particular items of brain damage dancing in my own head.

But when you hear he's not enough for a program specializing in people with disabilities, that is a tough one to chew on.  I've felt like our family has been bouncing around like a ball in a pinball
machine for years, trying to find a place to rest.  And I thought we had found it.  All we've heard about since we've moved here is This One Place.  This One Place where he can go for a summer program.  Where he can go once he ages out of school for a day activity program.  So it's been The Place in our minds this whole time.  Which is our fault.  We knew better than to rely on anything where he is concerned.  We put all of our eggs in one basket.  An epic error.

We went for a tour.  Nothing extraordinary.  They went to observe him at his school.  Then, the call.  'We have some concerns.'  'He does some spitting-I know he doesn't spit at people, but still, he spits a little.'  'We could try him in the summer program but we aren't sure it would work.'  'We aren't like the school-we don't have to take everyone.'  'We would have to split the program in two now because the place we were going to hold the summer program has carpet.  And we can't have him on carpet.'  'We would have to have him in the other building where there's no carpet.'  Each comment was like taking a bullet.

"But you're our place!"  I wanted to scream...."You're our bedrock for his future!"  "You don't understand!"  "You have shiny brochures!"  "You specialize in people with disabilities!"  "He has those!"  "He should qualify for this!"

But, I didn't say much of anything.  Because, when you're dying inside, the words don't flow much.  So now, he doesn't even fit in WITH HIS OWN KIND.  Which puts us into yet another category.  Which is ???  I don't even know?

So, a flurry of emails and phone calls later....a couple of hours of sobbing....a couple more hours of wondering whether a move to Canada was in order....ended in a night spent feeling numb.  Where do you go, when the place you're supposed to fit in; the place that's supposed to accept you, says you're not going to fit?  Where....where do you go?

Do you know why you read about parents of disabled kids doing horrible things to themselves and their children?  Because of things like this.  The government doesn't care about them.  Society shuns
them.  Friends are lost very early in the game.  Families rarely help, if at all.  (Except in our case-his grandma is his Godsend.). Programs that are supposed to help end up discriminating against them.  People end up feeling very, incredibly, terribly, alone.  Alone, with a child who is now going to be living at home forever.  Or, for your and their forever.  However long that is going to be.  Dreams died a long time ago.  Hopes were squashed in the first few visits to the geneticist or developmental pediatrician.  Your sense of humor develops into a very bizarre and twisted form of entertainment.  (Because, you laugh or you perish.  Simple as that.). The next time you read one of those stories, before you judge, stop and think a moment...what did this family have to go through, that led up to this horrendous decision?

A night of fitful sleep rose to a morning of sun-filled clarity.  Mason deserves to feel welcomed.  He is more than his behaviors.  He is a person.  We will not send him somewhere where they are waiting for him to fail...where everyday might be the day that we get the call that tomorrow is the day he can't come anymore.  We've worked too damn hard to get him to this point.  Given up too much.  Likewise, we cannot be held responsible for his behaviors.  I cannot be called daily and told how he misbehaved that day.  Because I'M AWARE.  I LIVE IT.  If I could fix him, I would.  (By the way, interesting side note....those parents that say, "I would never change my disabled child; I love them exactly the way they are...."  Those people?  Liars.  They are lying.  Because....if they could make it so their child wouldn't suffer anymore, they damn well better change it. When you hear people saying that, they're speaking on behalf of themselves, not their children.  If I could make Mas able to speak so he could tell us when he has a raging double ear infection, I would.  I could make his bowels work so he wouldn't have painful constipation, I would.  Just FYI.).

As it turns out, That Place doesn't deserve to have him.  We should be choosing or not choosing places....not the other way around.  And the cost to go there?  For what they're charging, the decision should be ours, not theirs.
As I put his coat and backpack on this morning, I told him, he was too good for 'that place,' and we would find him something better.  Then I kissed him on the cheek.  He ignored that and started to stim with his backpack strap.  That's the gig.  But I know.  I know that I will get him where he belongs, even if that place is just our house.  Because I have a square hole drill bit, and I'm not afraid to use it.

I found a quote this morning that fits the situation perfectly:  "Why are you trying so hard to fit in when you were born to stand out?"-Ian Wallace

Tuesday, March 29, 2016

I knew it was coming, so I steeled myself for it.  “Name?”  check.  “Date of birth?”  check.  “Street address?”  check.  “Insurance?”  check.  ….wait for it….  “And it says here that you’re unemployed?”  

Through seething teeth, I think to myself, let’s define unemployed.  Scrolling back quickly in my mind, my first thought goes back to yesterday afternoon.  Mas gets off the bus.  Comes in the house.  I remove his backpack.  Unzip and remove his coat.  Unclip and remove his speech device.  Clean and plug in his speech device.  Remove any “empty” pictures from the device and make sure it’s functioning correctly.  Untie and take off his shoes.  Give him his Miralax dose and after school snack.  Take him to the bathroom.  Unsnap and unzip his pants.  Let him sit the required 10 (Peds GI-instructed) minutes.  Wipe his rear.  Pull up his pants and zip and snap them.  See that he’s smeared stool on the back of his shirt.  Have him sit back down and change his shirt.  Go throw the shirt in the laundry.  Then the fun began.  Unknown screaming session.  For the next few hours.  We blame constipation.  But who really knows?  Ran around the house opening and slamming doors, throwing toys, throwing food.  We take him to the bathroom repeatedly.  He watches requested shows on tv.  Any commercial with applause?  Starts another screaming fit.  But applause sounds elicit the added benefit of covering the ears, throwing himself on the floor, kicking his feet.  Any commercial with babies? Same thing.  He watches YouTube.  Same thing there.  We pray for no babies and no applause.  (Why can’t YouTube have a filter for such things?!)

It’s beautiful outside so we decide to run to town to get a steak to grill.  Should be great, right?  But any car ride for Mas now means he gets a cheeseburger.  So, a cheeseburger it is.  We drive through, because sitting inside means:  might run into a baby or small child who makesbaby noises.  And if we’re in an enclosed space when the baby shows up, we have the added pleasure of getting scratched and/or grabbed.  Go park and watch trucks, which is his favorite thing.  I walk to the store to grab groceries.  Howard feeds him and they talk about trucks.  I walk back to where the truck is parked, lugging groceries.  On the ride home, Howard wants to play me a song.  Great tune, but it has applause at the end of it.  Mas responds accordingly.  

When we get home, Mas throws his usual screaming fit that signifies the end of a trip.  Covers his ears, runs in the house, down the hall, screaming.  Take him to the bathroom, same drill as before.  Untie and remove his shoes.  Unsnap and unzip his pants.  10 minutes of peace.  Throw in laundry, fold and put away one load.  Back to bathroom. Wipe.  Pull up the pants.  Snap and zip.   Time for his supper.  Get out his meds.  Feed him a limited supper because he already had a burger.  His show has ended and regular tv has turned back on.  A baby comes on the screen.  No sound, just the picture of a baby.  Instant screaming festival.  Runs down the hall, hands over his ears, screaming bloody murder, slams his door, picture falls down, kicking the floor.  We work on getting our food ready.  

We finally get ready to go sit outside.  It’s 56 and no wind-a gorgeous day by any standards.  Put my feet up.  Mas comes out.  We talk to him about looking for airplanes.  Dog makes a yawning noise.  Mas runs in the house, screaming, hands over his ears…same drill.  Comes back out about ten minutes later.  We talk to him about looking for the moon.  Someone walks by the driveway and the dogs start barking.  Masresumes his screaming episode.  We look at the time and decide a 10 minute early bath is totally alright tonight.

I go inside; he picks up his toys.  I bleach clean his ipad, the counter, his chair.  We go into the bathroom.  I brush his teeth, floss his teeth, start the bath water.  He removes his shirt, I remove his pants, his socks.  He goes to the bathroom.  I turn on the lights for his bath and the fan.  Wipe his rear.  He gets into the tub himself.  I wash his hair, clean his body, rinse his hair.  We make bubbles and talk about the bubbles.  I turn off the water, take his dirty clothes, head to the laundry room.

I change over the laundry, empty and load the dishwasher, update the shopping list, bleach clean the counters.  Howard feeds the dogs and gets the grill going and puts the potatoes on.  I put away clothes,Howard opens the shed door and looks wistfully at the boat for about ten minutes.  I go back to the bathroom, take Mas out of the tub, dry him off, set him on the toilet.  I put his deodorant on, spray some body spray on, and make note that it’s almost time for us to shave him and cut his nails.  I put his pajamas on and take him to his room and turn on his fan, give him his crib toy, shut the door, and go back to the kitchen.  I set out the morning items….cereal, bowl, cup, Miralax, spoon, meds, pudding, applesauce.  

I go back outside and Howard and I sit and enjoy the last bit of evening light while the chicken finishes cooking on the big green egg.  Bliss.  Mason comes out of his room continuously.  We keep telling him to go to bed.  At about 7:45, Howard and I sit in the kitchen and eat supper.  While stopping continuously to tell Mas to go back to bed.  At 8 pm, we clean the supper dishes away, unload and load the dishwasher back up, and get settled in to watch some Netflix.

Our Netflix show has some applause in it.  We hear pounding and screaming from Mason’s room.  He comes out in the hallway, screaming and covering his ears.  I chastise myself for not catching it and muting the sound.  He goes back into his room.  Next, our show has people screaming.  Mas comes out and repeats his display.  This continues until 10:30 pm.  Howard takes Mas to the bathroom for the ‘last’ time of the night.  He gives him his “sleep aid” (insert joke here).  We finally get to bed, lights off, at 11 pm.  Fall asleep around 11:30.  

am, our bedroom door flings open, Mas is standing there, screaming.  I look at clock, force myself out of bed, take him to the bathroom.  Wipe.  Put his diaper on.  Put his pants back on.  Take him back to bedroom.  Turn his moon on.  Check his crib toy batteries.  Tuck him in.  Close his door.  Say a small prayer.  Crawl into bed.

am.  Screaming like he’s being poked with hot pokers.  I go to his room, expecting to see wild animals in there.  Just him; fan off, toys pulled out, blankets on floor.  I take him to the bathroom.  Wipe.  Put his diaper on.  Put his pants back on.  He clicks on the roof his mouth-his sign for thirsty.  I give him a drink.  Put my hand on his forehead for the obligatory ‘do you have a fever’ mom check.  Nothing.  Take him back to bedroom.  Make his bed.  Put the toys away.  Turn the fan back on.  Turn his moon on.  Check his crib toy batteries.  Tuck him in.  Close his door.  Say a small prayer.  Crawl into bed.

am.  Opens our door.  Turns off our fan.  Grunts.  Grunts.  Grunts.  Slams our door.  Slams his door.  Opens our door.  Clicks our light switch repeatedly.  Grunts.  Grunts.  Grunts.  Slams our door.  Slams his door.  I go to his room, look around, all seems to be well.  Decide I should probably take him to bathroom.  Go to pull his pants down, and they’re soaked with urine.  Go to take his shirt off, also soaked with urine-up to his chest.  Turn the light on, take off his clothes, wipe him clean, wrap the diaper in a bag, throw it out.  Go to throw the clothes into the washing machine.  But the machine is full.  Because our machine is always full.  (I’ve folded more 3 am loads of laundry than I care to remember.)  Move clothes overstart dryer.  Go to his roomremove urine-soaked sheets.  Hope and pray his urine pad was in the right place and saved one of his two waterproof mattress pads….yes, luck is with me tonight.  Only have to wash his sheets and one urine pad and his pajamas tonight.  And one blanket.  Not bad.  Top blanket is okay.  Remake bed.  New urine pad, new sheet set, new blanket, old blanket from floor, pillow and crib toy back in place.  Put all urine-soaked items in the washing machine and start it, shutting the laundry room door so the noise doesn’t wake him up.  Go back to bathroom, dress him, take him to bedroom, tuck him in, check crib toy for battery life, turn on moon, turn on fan.  Close door.  Say big prayer.  Fall into bed.  One of our labs grunts disapprovingly.

5:30.  Alarm goes off.  Throw clothes on.  Let dogs out.  Feed dogs.  Mix up Miralax.  Pour cereal.  Start coffee.  Wake up Mas.  Take him to bathroom.  Undress him.  Put on deodorant and body spray.  Dress him for day.  Go to kitchen.  Feed him and give him meds for day.  Back to bathroom.  Brush his teeth and comb his hair.  Set him back on the toilet.  Pray he doesn’t get stool on the back of his shirt, which is the usual morning routine.  Check for a spare shirt for when that happens.  Close door so he can sit.  Get his backpack, shoes.  Check weather for coat options.  Get coat.  Get him off toilet.  Note shirt has stool on the back of it.  Change shirt while trying not to get it in his hair.  Wipe.  Pull up jeans, snap, zip.  Have him sit on couch to put his shoes on.  Put speech device around waist.  Put his coat on.  Zip it.  Put backpack on him.  Clip it.  Open front door and wait for bus.  When it arrives, follow him on bus and put his seat belt on.

Bus pulls away, and I get to have breakfast.  Now, I get to buy groceries, ours and his, do dog chores, (grooming, baths, etc.) clean, do outdoor chores, mow and/or push snow, do landscaping, check his supplies and replenish diapers/wipes/toothpaste/medications (OTC & prescription)/clothing/anything else he needs to survive.  

On a good day, if I plan everything just right and am on my game, I can usually squeeze out some time for myself, where I can quilt or take pictures.  (But lately, I usually try to catch at least a 20 minute nap…because even though our neurologist told us, “a lot of kids like this just don’t need much sleep”…guess what, we do.)  While on call for him, of course.  Because you never know when you’ll be called and told:  “He has yellow snot coming out of his tear ducts.  He is walking bent over.  His hands are purple.  His feet are purple.  His cheeks are purple.  His ears are bright red and warm.  He won’t eat his lunch.  He won’t drink anything.  He’s screaming and he won’t stop.  He’s very still.  We can’t get him to calm down.  He has diarrhea.  He keeps having bowel movements.  He hasn’t had a bowel movement all day.  He’s just not acting like himself.  He is spitting a lot.  He is drooling a lot.  His nose won’t stop running.  He’s a snot machine.  All we’ve done today is wipe his nose.  It seems like he just wants to go home.  He keeps pushing mom on his speech device.  He keeps pushing home on his speech device.  He keeps pushing I want to go home on his speech device.”  All of which are real things I’ve been called for over the years.  And that’s truly only about 10% of the calls I’ve gotten.  So I’m always on call, day and night.  For no pay.  No benefits.  No appreciation. 

But let’s look at your job.  What, 38.5 hours a week?  Because we all know the 40 hour work week is long gone.  Between waiting in line at Starbucks before work, lunch taking longer than it should, office birthday parties, leaving early for “special” events, and the all-encompassing “traffic” excuse, 38.5 might even be pushing it.  You.  Mid 20s.  Brunette.  Haughty.  Nose lifted a little higher than the top of your computer screen.  You come to work in your matching clothes, heels, hair done, jewelry.  You come to work, check people in, sit in your chair.  Your fingers touch the keyboard.  About 10 am you stand up to use the bathroom and “stretch your legs a bit.”  At 11:55 you head out for lunch.  Your chosen lunch spot is busy, so you call your office crony to let them know you’ll be a bit late.  You saunter in at 1:08.  Sit back down.  More typing.  Maybe some filing.  Some phone work.  At 2 pm you eat a power bar and drink a Sobe.  At 4 pm, you’re like a horse pointed for home.  Start joking with people as they come in, start emptying your coffee mug, straightening up the desk, headed for the homestretch.  By 4:30, you’re eyeing the clock like it’s mocking you…counting down the mintues.  At 4:50, you’re pulling up your nylons and adjusting your shoes, closing out of your computer.  At 4:55, you stand up and tell your co-worker that you’re headed out, to avoid the crowd leaving the hospital parking lot.  You head home, to your 20-something-year-old-life, which probably consists of a lot of selfish and age-appropriate daily decisions.  You either party or sit on a device all night, maybe even head to the gym and chew gum while looking bored on a treadmill, sleep all night, and wake up so you can go to work and ask some tired looking 46 year old if she’s unemployed the next day.  

So.  It says here you’re unemployed.  Sure.  Let’s go with that.

Wednesday, October 28, 2015

Standing here, as we are, on the precipice of 18 years of this, Mason's lifetime, seems as good a time as any for reflection.  At a time when we should be telling Mas to mind his curfew; days when we should be telling him to remember to keep his tank full of gas in the cold months ahead; nights when we should be making supper for him and his girlfriend and nod knowingly at each other when they go into his room to 'study'; on the cold, snowy mornings when he and his dad should be headed out coyote hunting; on those brisk fall mornings when I should be watching him at band competitions...instead, we are attending meetings where we are deciding guardianship 'due to incompetency'...filling out forms where we have to decide things like, will he be able to decide for himself if he can be an organ donor?  Have a fishing license?  Be sterilized?  Get married?  Then, for the real kicker; listening to a court reporter read those forms in a courtroom.  Out loud.  For the world to hear just how truly messed up he really is.  And just what type of decisions we've had to make on his behalf.  These are weird times.  As we look ahead, to what is reminds me to bask, at least a little bit, in where he's been, and where exactly he fits.

As it turns out, he doesn't really fit anywhere.  It was decided early on he was not high functioning enough for 'regular' school.  Our experience with a private, special needs school taught us that was also not the place for him.  As much as we've tried to fit him into society's pegs, he always seems to pop out; due to him being Mason-shaped and all.

I've tried to find a common thread through his life that can tie all of this together.  Certainly, all of the doctors, specialists, therapists, clinics, and the entire medical side of his life provide some type of common road for us.  The way all of his needs have impacted his sister's life for the past 17 3/4 years also provide some sort of road map for all the ways in which we have changed (and failed) as parents.  The days of laughter and joy have been there, too, and it's hard to think of Mas without thinking of him snorting or belly laughing.  So that has to be a thought that comes to mind.  But when it comes to where does he fit in, there is one answer.

When we lived in Ohio, where he was born, we started the specialty appointments pretty early.  He was born a 'trainwreck'; multiple health issues and birth anomalies that pointed to any number of bigger genetic diseases, syndromes, mitochondrial diseases, unknown dna disorders....the list goes on.  One doctor told us he would probably end up having "Mason disease," as science would have to catch up to him and end up naming his disorder after him.  We had two doctors tell us he most likely wouldn't make it to one year of age.  And we had no reason to disbelieve that.  Whereas Riley cried every night at 9 pm like clockwork for one hour, Mason screamed all day long.  He wouldn't eat.  I would spend an hour trying to get him to nurse.  The next hour with a bottle; pushing the bottle nipple against his lower gums so milk would come out, then I would blow on his face to illicit a swallow reflex; then, the next half hour or so I would pump so I could try to make more bottles.  Then repeat.  Of course we also eventually tried formula, because my milk never really came in properly, without a baby to suck properly.  That little tango went on for the first three months.  I wrote down every single meal time.  I would go to appointments and tell the docs how little he was eating.  They either didn't believe me or took one look at me and my stature and assumed he would figure it out.  At three months, they agreed to let us try solid foods.  We did.  (While still doing the bottle routine...but with formula more pumping.)  At one year of age, he was 17 pounds.  Armed with my notebook of every feeding he'd had the past year, finally, they listened.  They decided he needed a G tube.  He got one.  So now, he had one of the 'markers' they give you for poor prognosis....a feeding tube.  Failure to thrive was another.  Which we had.  He wasn't on the growth chart in any area at this point.  All of these factors, plus the fact that Naivete was my first, middle, and last name at this point, ensured that I believed everything I heard.  So, those were dark times.

I'm not sure what it was that changed.  But, the G tube had been placed.  Like every medical procedure he'd had so far (and would have yet in the future), it was plagued with difficulties.  The Air Force doc and the civilian doc had been in a pissing match about placement, and as such, the tube had been placed far too high in the stomach; right next to the opening to the stomach.  What this meant for Mas was, for the two years he had the tube, we could never bolus feed.  Drip feeds only.  So, when he needed to eat, he had to have it dripped in overnight.  If we tried a bolus feeding, he would projectile vomit.  Something must've snapped at that point.  Because I remember distinctly looking out the window and thinking, "He is going to eat macaroni and cheese and put his feet in the grass."  (Why those two things, I don't know.)  He had been very sheltered up to that point, but suddenly, it seemed really important to get him OUT, and have him FEEL the outdoors.  Like, vitally important.  Crystal-clear.  I remember taking him out the front door, on Kyle Lane, across the parking lot, to a little spot of grass, taking his socks off, and putting his feet in the grass.  And, at the moment, I believe, something took.  I think nature said, I've got this.

To be fair, (and for accuracy in reporting) there is no real reason why Mason should be either comfortable or accepted in nature.  His thermoregulation issues are a major roadblock for him.  If he gets cold, he stays cold.  If he gets hot, he stays hot.  He won't wear hats.  Or mittens.  Or scarves.  He refuses.  We are pretty sure he has Raynaud's, as well.  Although he is ambulatory, he stumbles.  On everything.  Visible things and not visible things.  Wet rocks, uneven trails, slippery leaves, cement stairs, any outdoor surface is fraught with hazards for him.  And falling for him isn't just an inconvenience.  He has huge front teeth that stick out like Bugs Bunny.  That he will someday land on and knock out.  He refuses to wear sunglasses.  And he has foveal hypoplasia.  Which is some fancy thing wrong with the back of his eyes which means he absolutely should wear sunglasses.  He won't.  He has bowel issues.  Which means toilets kind of need to be on our radar at all times.  He won't squat or pee in the grass.  Won't.  He has medication requirements that mean we need to be super organized when we're out and about.  He is kind of the poster child for a kid that shouldn't enjoy or really get the opportunity to go outside very often.  And yet.

Nature has kind of adopted Mason.  Sometimes, when I see Mason out in nature, I feel like I am intruding in some way.  I swear I can see the trees expand ever so slightly as he walks down the trail; the sunlight reaches through the leaves and dances in his hair and on his shoulders; the water in the brooks giggles and chortles as he wades ever so close to the shoreline, throwing in rocks and giggling in reply.  He always seems to know just when we should head back to the car before a storm; as well as knowing hours before a storm that one is on the way.  We call him 'Our little Meteorologist' for a reason.  He has a connection there, that is both hard to explain and hard to understand.  And I'd almost rather I don't get let in on the secret.  Because he deserves a secret or two.

While I can't say he glides gracefully through it, (that would be a lie) he does seem to have a symbiotic relationship with nature.  It's something to see.  He does seem to know when to dip and dive when She rolls and punches.  He still falls, but she seems to know it's coming, and reacts accordingly.

I remember playing outside alone often as a child.  When you grow up in a town of 80 people, it happens.  Stepping out into the cold winter air; your boots crisp on the sparkling snow; the yard your playground.  I remember making the coolest artwork out of icicles, snowhorses, tunnels, you name it.  In summers I remember playing at the creek in Monroe and catching creek chubs with our bare feet in the chill water standing on the slipper pebbles, standing under the bridge and waiting for a car to go by over our heads, and wading through the hip high grasses as we picked off the seed heads and scattered them onto the ground.  Fall always meant bike rides past dark, the sound of combines humming through the night, the smell of burning leaves filling our noses.  The lucky nights were when we could watch the moon rise whilst still out on our bikes.  Spring was always a mix of the flowers in the garden, the early spring storms that we always loved to watch form and scream over the prairie, and rains puddling in the front yard, so we could walk barefoot in them, squishing our toes in the lovely mud.

As the seasons have flown by for this Little Man, it makes me glad that he has been able to embrace the nature I remember from childhood.  Maybe not exactly as his dad and I once did, but he is right out in it, nevertheless.

In closing, assuming the gestalt theory has any basis, and the whole is greater than the sum of its parts, then we can hope nature as a Grand Old Dame ('Mother,' if you will) is worth more in her totality than she is as sold off for the sum of her parts of trees, trunks, leaves, pebbles, rocks, sands, branches, bushes, water, etc.  (And as such, I probably have greatly wronger her by not capitalizing Nature and Her throughout this diatribe.  But I digress.)

Back to this gestalt theory however....if those Germans knew what they were talking about in regards to art, and if we are allowed to apply this to other areas, (and I sure hope we can) then I hope Mas is worth more as a Mas than he is than if he were totalled up for the sum of his parts of his identifiers on this year has shown us, words can be hurtful.  Hearing someone read about all the things your child is not and can not and will not be from a piece of paper...when they could have walked through a forest and looked at that tree instead...well, shoot.  Seems like a really grand waste of a tree.

It's hard not to be introspective at this time.  These Times.  Because even though we are tired and weary, we have done a lot to get here, and sometimes we have to remind each other of that.  I was just told yesterday on the phone that although there were other people in front of me on a waiting list for an appointment for Mas, we were getting the appointment first, because I had been calling her so often.  ;) A good reminder that this journey marches on, and that we are still supposed to report for duty.

So, although we seem to be hit square between the eyes, pretty damn often, (if not daily, some weeks) with the cold, hard reminder that Mas Does Not Belong 'here, there, or anywhere,' it does seem as though he belongs well, everywhere.  Right outside our door.  He may not do well in a crowded bus or a hot room or a noisy mall or a stuffy restaurant, but get him out in the mix with with "Mother" and he is right where he needs to be.  

In closing, I hope nature continues to hold him close and guard their secret.  I don't know how good Mas is at keeping secrets.  But I do think he knows things I don't.  A lot of things.  (And sees things I don't...but that's for another post.)  And someday, I suspect that the other side of this tapestry may provide some answers.  But for now, we will keep enjoying watching our son play quietly with his best friend; sharing secret giggles and quiet whispers along the banks in the summer...watching mesmerized as she spins up storms and throws down lightning in the spring...grinning ear to ear when she covers our world with a blanket of white...and yellowing loudly into her tinted canopy as the biting winds and the crimson leaves of late fall make themselves known.  Because, she can't say a word, either.  But she speaks volumes.

Wednesday, February 19, 2014

Once you get past all of the medical issues a special needs parent has to deal with on a daily basis, there is one overwhelmingly present issue that I think is universal to special needs parents, yet probably foreign to those of you lucky enough to have a neurotypical child.

The apology.

I am sorry.  I'm so sorry.

I'm sorry he spit on you.  I'm sorry he threw that.  I'm sorry he peed his pants.  I'm sorry he had a bowel movement that blew out of his diaper.  I'm sorry he grabbed you.  I'm sorry he is freaking out.  I'm sorry he claps and jumps up and down.  I'm sorry he pulls you to what he wants.

What I am realizing, is two things:  1)  It is almost impossible to keep apologizing every day.  2)  If we apologized in full, it might look different to the "normals."

For example....

I'm sorry he spit on you.  He spits when he's pissed off, or when you tell him no.  I imagine it has something to do with the fact he can't say "Go to hell" or "Oh shit" or "This Day Sucks."  Even if we program these phrases into his device, feelings are next to impossible for him to identify.  It's like trying to teach a blind child what the color blue looks like.  He spit on you to tell you off and get your attention.  It probably worked.

I'm sorry he threw that.  He has ears like his mother.  Sensitive.  He loves the sounds of different things falling down the stairs.  He loves the sounds of hard plastic toys hitting tile floors.  He hates the sound of tinfoil and dogs barking.  It's genetic.  He throws because it's fun to listen to.  (And sometimes to tell you off.  See previous explanation...)

I'm sorry he peed his pants.  God, or whomever made this child, thought it would be fun to not only give him no voice and brain damage, but how about messed up signals for when he has to pee?  He is 16 years old and he just became mostly toilet trained this past summer.  He will still pee sometimes because he has a bladder infection, and sometimes to try to get an early bath so we can take him out to eat.  Smart little shit.

And speaking of shit, I'm sorry he had a huge bowel movement that blew out of his diaper.  Chronic constipation is complete bullshit.  He's had it since birth.  He is on multiple medications for this issue, every single day.  And our entire day revolves around his bm's.  How many he's had, what consistency, if he used his device appropriately to tell an adult he had to go.  About fifteen to twenty times a day, I take him to the bathroom.  We mostly make it in time now.  But sometimes we don't.  And sometimes he eats something that blocks him up even worse.

I'm sorry he grabbed you.  He grabbed you because he lacks the ability to say, "Hey, look!"  Or, "That kid is screaming and it's hurting my ears and I want to get your attention to make them shut up."  He grabs because when he really needs your attention, it's the fastest, most available thing for him to do.

I'm sorry he is freaking out.  He has been doing that, in some form or another, for sixteen long years.  There is a reason I am frazzled and overweight and exhausted.  Stupid little things can set him off into a tantrum.  Small little things can also set him off into a tantrum.  Sometimes, caffeine helps to instantly calm him down.  Sometimes, caffeine doesn't make any difference whatsoever.  Usually, we know exactly what it was that set him off.  Occasionally, he surprises us by being bothered by something new, and usually minute.

I'm sorry he claps and jumps up and down.  He's excited.  He didn't get the memo that 16 year old boys are not supposed to clap and jump up and down when they see a train, for example.  Or a semi.  It used to be cows and stars and water.  Now, it's semi trucks and lightning and trains.  It's his way of seeing, "ARE YOU SEEING THIS?  THIS IS SO FRICKING AWESOME!"

I'm sorry he pulls on your hand to guide you to what he wants.  Sometimes, the things he really wants to say are not programmed onto his device.  So pulling you towards it is a quick way to say, "Hey, come look at this and help me out a minute."

Do you get the picture?

If anyone should be frustrated with his behaviors, it should be his family.  We have earned the right to be the president, vice-president, and secretary of the "Please Stop Doing Those Behaviors" club.  It has been hard-won.  We are a battle weary crew; my husband, myself, and my daughter.  We hate all of these behaviors more than anyone else could ever possibly fathom.  And we have tried everything we know of to try to stop them.


WE ALL DO.  He didn't choose to be like this any more than I chose to have brown eyes.  But here he is, and he's like that anyway.  And he is living his life.  Clapping when he shouldn't.  Squealing when he shouldn't.  Being loud when he shouldn't.  BEING MASON WHEN HE SHOULD.

So, please accept our apologies for every thing he is about to do that is going to annoy or bother you.  And just know we would love to make him perfect and fit into your norm...if only to get a break from the stares, whispers, and apologies.  He is who he is and we have become who we've become to deal with this life.  It stinks.  But he is still awesome.  And he deserves value beyond those behaviors.

Wednesday, November 20, 2013

Well, Ain't That A Kick In The Head?

So, on the eve of Mason's 16th Birthday, with Christmas lights a twinkling in my studio, and the sound of Lisa Flora filling my ears, it is time to exorcise.  (It's also time to exercise, but that's a different post...)

(Various Things In Motion prevent me from going into great detail in this blog post.  But, truthful points can very easily be made.)

Also, maybe grab some nosh?  This one is long.  I don't post often, but when it wants to flow, baby, it wants to flow.  So here come the waterworks.

Scene:  March 2013.  Mason's Behavior Therapist leaves his school.  Which is awful news, since she had implemented a behavior plan which had reduced his behaviors to almost zero.  (This particular person had Mas down, pat.  She read him like the proverbial book, saw through his b.s., and made him react to things the way we knew he could react.  Huge.)  We had not witnessed spitting, throwing, flinging, squealing, etc., for months.  So, it was a huge blow.  A huge enough blow, that we started wondering if this was the usual turnover at his school that we were used to, or if this were the start of something worse.  Enter May.  His beloved Speech Therapist leaves his school.  The one who has been instrumental in not only developing Mason's communication, but teaching him a reading program, (Can you believe, a reading program?  She actually believed he could read...which Howard and I have always suspected...) and working hard to ensure his entire school day worked in a way that was well-rounded and made sense to Mason.  I can't even say enough about how tragic it was to lose these two in such a short time span.  Then?  We lose his classroom teacher...and his aide...and another aide....

Well, suffice it to say, 8 staff members later, and in 3 months time, things were looking mighty different at Mason's school.  Different enough, that we were starting to dip our toe into our 'options', which, if you are a special family, is a tiny, murky, puddle of dirty water at the end of your driveway.  Do we move away?  Do we pull him out and put him somewhere (read: anywhere) else?  Do we just ignore the common thread of reasons for staff leaving and hope they are all lying?

So, we began to explore our options.  Which is no easy feat.  Exhausting, depressing, scary, and worst of all, tough on Mason.  Mason has many specific things wrong with his brain, but the primary issue is a nerve migration disorder, which includes biparietal polymicrogyria, enlarged ventricles, cysts, and also a sensory integration disorder.  He loves, craves, needs routine.  Not unlike a child you may know who is diagnosed as autistic.  Structure, to Mas, is air.  Structure and routine are how he is able to be comfortable enough to relax, to allow repetition, and to learn.  So, it's a biggie.

We write a letter to the temporary CEO.  Asking why so many people left at once, with the same story. (If your child was a sophomore in high school and lost ALL of his teachers in three months, would you not ask why?)  I know you would.  Anyone would.

Enter August.  Mas has his usual 2 week break from school.  Then, he attends school for 4 days.  Then, we get a letter from his school, saying they are no longer willing to educate Mas.  I want you to re-read this paragraph.  A 2 week break.  Followed by 4 days of school.  Followed by kicking Mas out of school.

The word "classy" did not figure in here.  These were people with their doctorate in education, deciding that if the parents had questions about their special needs child losing all of his staff in three months, the best response to that is to kick that child of out school after a two week break.

Now, I've never been a big proponent of anyone having their doctorate.  I have met far too many 'dumb' educated folk.  But, for people who have their doctorate in education, this seems almost comical.  What kind of response is this?  To know a child with a need for structure, and then to do this, isn't just dumb, it's also very mean.  MEAN.  Even more than unethical.  Worse than unexpected.  Just plain MEAN.

So, enter my ever dissolving belief system, and where were we this past August 31st up until today?  In the beginning, very lost.  I consulted many people about what to do.  By people, I mean friends, family support people, doctors, lawyers.  Even threw up some prayers.  And if you know me, you know where I was mentally to try that.

I eventually came to repeat, and believe, this:  'How someone treats you is their karma.  How you respond is yours.'

As far as mantras go, it was a solid one.  We may have been stripped of options, but we were not directionless.  We could either spend the time we had in September going after those who did this to Mas, or we could put that energy, at that time, into moving forward.  And THAT, my friends, is the hard part.  You can post it on facebook, you can plaster it on a shirt, you can even use it in conversation with your friends, but to actually DO it, is another thing entirely.

But, we decided our energy at that time was best spent moving forward.  So, thanks to his school waiting for two weeks of a vacation, then letting him attend school for four days, and then bombing us with his letter that kicked him out, we ran into the situation where the public schools in the area were already in session.  Did that make our life harder?  So much so.  The public school we were rooting for, a half hour away, had an adult day program a few blocks away.  Mas could have attended that school, and spent a couple of hours a day dipping his toe into their adult day program.  But, since they had already started their school year, that option was off the table.  Exceptions could not be made.  So, that left us wondering if we should just up and move?  Our current geographical location leaves us in kind of a desert of services.  To say we are remote is maybe an understatement.

So, it was with a lot of fear and apprehension that we finally decided to try enrolling him in the public school in the town we live in.  No easy decision.  We knew wherever he landed, there would be a transition period.  Couple that with the fact he ended up having only 4 days of school in 7 weeks, and the behavior component was very up front and center.  Those behaviors I had mentioned previously?  The ones we hadn't seen in at least 6 months?  All came back.  With new ones.  Suddenly, we had throwing again.  And spitting.  And scratching.  And hair pulling.  And pushing on his speech device, "school", "I want to go", and "staff" and "friends."  On the worst days?  "School," followed by, "I want to go," followed by, "I'm mad."  Aside from the early days of force-feeding him and charting how little he ate and having two doctors tell us he would die before a year, the past few months has been the hardest time of his life for us.  Just off-the-charts difficult.

It makes a person retrospective, I guess, when you are faced with adversity on top of already-existing adversity.  I mean, "Why" is a popular question, but I find it boring.  Until I die and find out what is going on in the afterworld, "why" is really irrelevant.  It may be more relevant to Mason, whom we have watched go through so much awfulness since he was born.  Try watching him scream, all day long, for the first year of his life.  Not colic, my friends...not a couple of hours of screaming, (which Riley had done, like clockwork, and we were used to), but all day long screaming.  Which is where my stress eating really began, and our family really started to unravel.  Then move ahead to him not being able to suck, having zero appetite, having breath that smelled like bleach, having a little something wrong with almost every single part of his organ system, missing milestones every month, and then the fun days:  doctors appointments.  Try holding down your baby while the docs try to get a free-flowing blood sample without the use of heat or a tourniquet...on a child who was always riding the line between hydration and dehydration.  Those days were the dark days for our family, our selves, our marriage, our psyches.  But, these past few months, have been right up in there.

Because, choose wrongly, and guess what?  You spend months getting him used to a system that may decide it doesn't want him.  Or can't handle him.  And then where are you?

Special parenting is truly gruesome at times.  Most times.  There is no guidebook for this shit.  There is only best guesses, crossing fingers, furtive prayers, and a tiny nugget of hope left in your gut that maybe, just maybe, things will work out and you will make the right decision.  It is truly awful.  I can think of nothing in my existing life that is so difficult and yet harbors so very little rewards.  Intrinsic rewards aren't even there.  It's just work, work, and more work, coupled with people telling you all the things that are wrong with your child, and you constantly apologizing or trying to explain his:  behaviors, drool, toileting accidents, squealing, clapping, bad teeth, bad breath, urination issues, bowel issues, etc.  The list does not end.

Now, enter the rest of the song...(Dean or Frank, it's up to you...I personally have to choose Dean on this particular toe-tapper...)

"My head keeps spinnin'
I got to sleep and keep grinnin'
If this is just the beginnin'
My life is gonna be beautiful
I've sunshine enough to spread
It's just like the fella said
Tell me quick
Ain't that a kick in the head?"

To which I reply, Ain't it, though?

Because here we are, on the other side of the storm, and there are some lovely things to report.

First of all, for the past 8 years of our son's attendance in his 'school', we have asked repeatedly for him to be able to observe more neurotypical peers.  Note I said, "more" neurotypical.  We weren't asking for the moon.  We weren't asking for them to produce students they didn't have.  We were asking for him to be able to be in the presence of kids that were higher functioning than himself.  And every year at our IEP, it was verbally promised.  And every year in practice, it never happened.  We were foolish not to get it in writing, but remember, these were during the "I believe in the goodness of people years," so we really felt that they would want to do what was best for Mason.  

So, now, guess what?  Guess who is the lowest-functioning kiddo in the room?  FINALLY.  What we have wanted since the beginning.  Mas is.  He is surrounded by higher-functioning peers all day long.  Which can only be a good thing.  Why?  Because Mas learned a long time ago, (about 8 years ago, to be exact) how to model down.  When he started at his 'school', he didn't have any behaviors.  He's learned a lot over the years.  So, we knew that if he could model down, he could also model up.  Will it be instant?  Hell, no!  Nothing is instant for Mas.  A very wise man, Bruce, once told us that things that would take a 'normal' kid 5 tries to learn, would take Mas 2,000 tries to learn.  I hope that he was correct.

So, here we are now, with what we said we wanted.  We said we wanted him to be the little fish in the big pond.  But it is one thing to wish that and another thing to see it play out every day, right in front of you.  

Which brings me to yesterday.  Mas had been riding a van to school by himself every day.  But, this week, I opened the door to see a very happy, adorable little boy sitting in the second seat behind Mas.  First words out of his mouth?  "Hi, Mason!"  So, I said hi, and asked Mas to wave hi, and he didn't, which isn't really surprising.  Because for 8 years, he has been in a room with kids who would not respond to him at all when he waved or used his device to say hi.

So, that brings us to that afternoon.  I wait for the van to pull up.  It does.  I open the door.  The adorable little boy says, "Bye, Mason!"  What does Mason do?  Waves at him.  WAVES AT HIM.  

I think that wave said it all.  Maybe we are put through trials to strengthen us?  Maybe we are put through trials to pay off bad karma from those in our families who came before?  Maybe it is all chance and there is zero rhyme or reason to it?  Or, maybe, just maybe, everything happens for a reason.  Which used to be my mantra.  Which may come back into circulation!  (Perhaps "why" is not so boring of a question....)

"I couldn't be any better, or I'd be sick.
Now tell me quick, oh, ain't that a kick?
Tell me quick, ain't that a kick in the head?"

We know this won't be fast.  And we have always wondered whether we screwed up by not having him in public school, or at least a better environment, over the past 8 years.  But, in closing, this sums it up best.....

I know this is just the beginnin', but I hope his life is gonna be, "bee-yoo-tee-ful!"


Wednesday, July 17, 2013

Sometime's nothing's a real cool hand....

Well, the results are in....and the winner one?

Our genetic testing we fought so hard for and waited six weeks for?  Normal.  A R G H.  I can't say we were necessarily surprised, but we were disappointed.  Howard reminded me we are probably the only two people in the world who have ever been upset to have normal genetic test results.  I had to agree!  And laugh!

The good news to this is....well, interesting.  While they couldn't find anything on his CGH Microarray, they did offer us a cool and unique opportunity.

Dr. Hoyme, the geneticist working with our family, obtained a research grant that allows him to enroll six undiagnosed children in a study.  The study involves drawing his blood, my blood, and Howard's blood, and doing a small-scale version of a whole-exome sequencing on Mason's blood.  (The full version of this test normally costs around $9,000.)  If the small scale version returns nothing, it sounds like the next step would be the whole-exome sequencing.

The coolest part?  Dr. Hoyme can select 6 kids for this study....and Mas is now #4!

We are headed in to do a bunch of paperwork and some bloodwork, but as of right now, it at least looks like there is a new direction to head...which is wonderful!

So, although the original test we had pinned all our hopes on came up empty, it did lead us down another road....and hopefully this road will continue down a path to some answers.

Tuesday, July 16, 2013

On this thing called vacation....

So, I can report with high accuracy the fact that we have not done such a great job of guarding our time during these special needs family years.  While we always made sure our son's needs were met, we did not make sure our marriage needs were.  Neglect of such things tends to make its' presence known after awhile.  And it did.  Now, we are still pretty bad at doing things as a couple and getting away, but we do make an effort.

While it's a well-known fact amongst 'special' families that a trip to the shower or the walk from your child's car door to your own can feel like a vacation, I like to call a vacation anything where you are far enough from home that you can no longer turn around easily.  That is the point in our trip when I can relax, pull out the cheesy magazines, and become one with my time.  To ensure that we go far enough away for that to happen, once a year, for about ten years now, we go fishing for one week in Canada.

Canada is, well, Canada.  Unbelievable scenery, great wildlife, friendly people, amazing fishing.  We are talking about nice, deep, cold water fishing for walleye, muskies, trout, and smallmouth bass.  While those of you unfamiliar with muskie fishing may think it sounds relaxing, it isn't.  Muskies are called the fish of 10,000 casts for a reason.  They say it takes that many tries to get one.  I used to think that was really funny.  Not so much anymore.  It is a major time investment to see one, let alone catch one.

In our boat, muskie fishing is all business.  Leave the dock around 7 am, fish until dark.  Eat/drink/rest/pee on the boat kind of fishing.  We take it seriously.  We have fun, too, but this isn't the crack open a beer and put your feet up kind of bobber fishing that most people think of.  This is flogging huge, heavy lures, towards any visible or not visible structure that might hold a muskie.  Generally the weather can be anything from four foot rollers and 30 degrees to flat calm and mid 90's.  We chose to go in July this year, so I am expecting more of the 80-90 degree version.

So what about this means vacation, you ask?

Freedom.  The freedom to wake up when you want, eat when you want, eat what you want, take a nap when you want, stay up late if you want, spend your time like you want.  Any special family knows, this doesn't happen very often.  Usually, as a caregiver, your time is spent wondering what your patient needs next.  When you are freed up from doing that, it is heady stuff.

The first day or two of vacation, are the worry days.  You worry about what's happening at home, you worry about them being healthy, you worry you may have forgotten something.  The next 3-4 days are the sliding into happiness days.  You start to feel like your old self again.  You make jokes, you laugh, your face starts to hurt from smiling so much.  The last few days are the reality days.  You realize vacation does not last forever, and yours is about to end, and then it's back to your life.

The reality is, these days happen with alarming scarcity once you have a special needs child.  Even to be able to pack for a trip and not have to worry about their entourage of supplies, is a treat.  To think, you are only packing for YOU, not for your child and every contingency that may arise...that is a great relief.

Guilt comes into this trip, on occasion, but you try your best to push that away.  As a special family, you experience guilt enough...why bring it along on vacation?

The packing, the worry, the driving, the preparation that goes into this one week, is astounding.  We talk about this trip for 51 weeks a year.  We will be planning our trip for next year on the drive home this year.  It is truly a magical week, regardless of the bugs, waves, sun, wind, bad fishing, or any other things that most people would call adversities.

For me?  I can't wait to throw that first cast, when you are full of hope that you are going to see a muskie today....with Zac Brown playing over the boat speakers, sunglasses on hat firmly on, sunscreen applied, and a cooler with our lunch in it, sitting under the casting deck.  Waving to friends, old and new, that we see out on the water....taking pictures of bald eagles as though we won't see hundreds before the week is out.  Breathtaking sunsets and gorgeous trees vying for your attention as you cast hopefully into the deep....spending your time.  Just spending it.  The way you want.  I can't wait.