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!"