Wednesday, June 7, 2017

The Vast Learning Seas

I had a work study job in college.  A number of them, but one of them was at the Lifelong Learning office.  Sometimes work study gigs were:  you're poor and the college needs to give you money so go to this office once a week and they'll give you some shredding to do and don't talk to anybody.  But this gig was a good one; they trusted me and gave me a desk and eventually let me answer phones and take credit cards and help make their course books, etc.  It was pretty cool to see people want to better themselves by taking courses at their (the age I am now!) ages...some of them were just fun courses to get their feet wet, but some of them were actually going back to school to earn a degree or to finish one, and I always thought that was pretty neat.

I've always believed we are all lifelong learners, and the classroom is truly wherever we are...whether I'm sitting in my hammock or casting on my boat or waiting in a doctor's office, I'm taking it all in and I'm trying to better myself; to learn something.  For one thing, it's a way to stave off imminent boredom.  For another, it's a way to honor our brains.  I think we're all the same way, whether you've thought about it or not.  We're all sponges.  Some of us are spongier than others...!!...but, we are all soaking in the world around us in some manner.

Howard and I have always felt the same way about Mason.  We've always read to him the same way we did to Riley, we talk to him the way we do to Riley, we've shown him things the way we did to Riley.  A psychologist told us once that things that take a neurotypical person 3-4 times to learn will take Mason 2,000 times to learn, but that he will eventually learn them.  I used to take comfort in that.  But now I realize he was wrong.  Living with two scientists makes you embrace science on the daily...as well as being a visual learner.  I'm not a neurologist, but even a stay at home mom can tell by looking that things aren't right here...Mas is not going to learn everything we are.  Mason's pictures are on the left and mine are on the right.  (All I have for a control comparison...and they weren't looking for brain malformations when they scanned me; so who knows-maybe I have the same malformation?!  But it works for this demonstration, so indulge me...)  First of all, brain mass alone, Mas has far less tissue to work with.  (Not that that is always an indicator, but often times it is.)  Also everywhere that you see black?  That's a spot where good, healthy brain tissue should be...not spinal fluid.  That big ol' ventricle in the center there should be nice and small, as well.  There are a lot more technical, neuro-type, big-dollar college words to identify all the problems shown here; but my point is, anyone can see by looking that:  this ain't right.






































So, it's probably safe to say he is never going to learn what a neurotypical person does, scientifically speaking.  And I'm not all hearts and flowers enough of a person to say "he will speak someday and regain all neurological function and get married and have kids and ride off into the sunset!"  Too much Getskow in me for that.  But, all of that taken into consideration; he still learns.  He progresses.  He absorbs.  Albeit slowly and sometimes painfully.  He still learns.

I really can't even tell you how many times people have said:  You should write a book.  And I'm fairly certain it's not because of my life in and of itself.  It's due to Mason.  He came into this world like a tornado, and has been blazing his own swath ever since.  The first five years of his life were really dedicated to keeping him alive and trying to diagnose him.  That's not an overstatement; that's just a fact.  Many a night we put him to bed and thought, no way is he gonna wake up tomorrow.  But he always did.  And we basically held our breath for the first 5 years.  Always wondering.  Never thinking too far beyond today, each day, because that was enough, thank you very much.

So when he started 'kindergarten,' it was really kind of a shock and awe situation.  He was in a self-contained room, (read: zero mainstreaming) and he was in with 5 other special needs students.  I would drop him off and go home and experience having a life for the first time in five years.  I took care of my yard.  Cleaned my house.  Took care of my pets.  Quilted.  You get the picture.  I didn't pay of lot of attention when he started crying when I went to drop him off at school.  He was non-verbal; who knew what was up.  I assumed all was well.  Once, he fell on the swing at school and fractured the lower ridge of teeth on the mat below him.  A well-meaning aide told me later that a 5th grade student was watching him at the time.  !!  The clincher, though, was one day when I picked him up to find his arms wrapped with Ace bandages, and the bandages were tied above the elbows behind his back...basically rendering any protective reflex if he fell totally useless.  Add that to the fact he had an already previously fractured jaw and Bugs Bunny front teeth, and it was terrifying to consider him falling and landing hard on his face.  He was an incredibly clumsy walker then; had PT at the time to help with that, so this was very troubling.  When I asked the teacher what she was doing, she told me this was therapy specifically prescribed for him by a private school in Sioux Falls.  ??  What?  A school we'd never heard of?  So, I called that school.  They had never heard of Mason and had never seen him before.  To make a long story short, the aides there let the dams burst and started telling me all kinds of tales about their days there; things the teacher did and the way they spent their days...and we ended up moving.  That was his first 2 years of education in a public school.

We next moved to a small town in SW Minnesota.  When they read about Mason's history, they wanted nothing to do with educating him, so they suggested sending him to that same private school in Sioux Falls.  Well, they made it sound so great, and after our poor experience with public school, we thought why not?  So, we sent him on the bus that first day, an hour away, to private school.  He came home with a perfect set of teeth marks on his cheek.  I called the school, horrified, to find out what happened.  Oh, he was bit by another student, they said.  I said, is there a plan to keep that from happening again?  No, that's just something that happens here.  So, Howard came home, and by this time, his cheek was swollen and purple, and the bite marks were even more worrisome-looking, so Howard called the woman that ran the school, Betty.  She said, "You need to teach him how to fight back."  Howard said, "If you teach a child with an IQ at that level to fight back, you're just teaching him how to fight."  Her reply, "If you want him to keep attending school here, that's what you're going to need to do."  !!

A few years later, she resigned.  Good, we thought, that evil was gone.  Little did we know she was the lesser of two evils.  She was replaced by an even worse female administrator.  This woman ran the place by surrounding herself with a gaggle of women who thrived on nepotism and cliques.  I called them the "Women In Heels."  The reason for this moniker was, they came to work every day in heels, flashy jewelry, and business suits...and yet, these were the women making decisions on Mason's education.  Women who CLEARLY never spent five minutes with him.  How did I know this?  Because if they had, Mason would have made shreds of their earlobes from that jewelry.

His time at this school can best be described as a nightmare.  He was in a classroom with a varying number of students and staff.  He had 7 teachers in 9 years.  At one time they had 18 people in a room so small and echo-y, that I had to go to the Women In Heels and demand they change it, because even I couldn't have stood a day in that room.  They claimed they had no other rooms.  They said they handled it by having the students out of the room as much as possible.  Which of course we found out later was a lie.  (Lies were the standard operating procedure at this school, sadly.)  His therapists changed so often that we stopped keeping track and stopped getting to know them, for awhile.  Every time he got a new teacher or therapist?  No one would tell us or send a note or letter or email or anything.  Mas would just come home furious with behaviors for about a week and then we would find out from another parent that there was a new teacher.  In this school, you were always welcome to come for a visit...as long as you called and let them know first.

When Mas first got his speech device, he did amazing things with it.  He would tell us the back seat of our car was 'too hot' or 'too cold'.  One day in music class the teacher sang something and he pushed, 'change the channel.'  !  He used to use the device often and well.  His usage dropped off considerably and we never could figure out why.  Then we found out from one staff that no one was replying to him in the room when he used his device.  Of course, the students couldn't reply, because he was in a room where he was the highest-functioning student, and although we fought for years to get him in the next room over, where he would've been the lowest-functioning student in a room full of kids with speech devices, they denied us every time because the teacher didn't want a student with an IQ that low.  But it was far more troubling that the staff wouldn't reply.  So, he stopped using his device.  Much like a person left in an institution who is talking but no one answers...eventually they resort to talking to themselves and in the end they go silent.

The stories at this school would fill another blog post and a book, (and someday they will) but suffice it to say the lies and coverups and bullshit that happened there would make your skin curl and your blood boil.  In the end, Mason lost every member of his team except for two people, so we demanded to know why everyone left.  Their answer was to kick Mason out of school.  Via letter.  On a Friday.  Because that's how this place rolled.  If you think about it...that's what they did to MASON.  They pulled his rug out from under him...forced everyone he knew to leave year after year...and in the end, dropped him off at home after school on a Friday and he couldn't go back.  To call this place a nightmare is to give it the benefit of the doubt of happening under a shroud of darkness.  Which it didn't.  It operated under the cover of daytime.  So 'nightmare' is not an accurate descriptor.

To be fair, we did have a very small handful of fantastic therapists at this school, though...the only saving grace of the entire experience...so we tried hard to count those as blessings as we moved him to the public school in the small town we were living in.  (To try to avoid another physical move for our family.)

The public school wasn't thrilled about having to educate him, but they knew that we knew the law and they 'had' to provide him an education, so there we were.  Now, he was in a classroom with about 4 kids, off and on during the day, and he had access, for the first time in 8 years, (actually 10 years) to neurotypical students.  But, they refused to mainstream him.  Even after I told them we didn't want to mainstream him because we thought he was going to make great art or write a great history paper...but because we wanted him to see that students could SIT in desks and be QUIET.  For 8 years he had been learning to model down...learning to 'fight back' under Betty's tutelage...and finally we wanted him to observe some normalcy and see if he could model UP.  But, this teacher assured me she had been trained in transition work and she could help him with that.  So we crossed our fingers.

Which brought us forward to being called at least 4 days a week by the teacher, asking me to come pick him up from school...for reasons ranging from: he's acting weird, he's going to the bathroom a lot, he seems unhappy, I don't know what to do with him, how do I keep him occupied, what do you do to keep him busy at home, kids walked by in the hallway and he covered his ears...this list is so long I can't even tell you.  This was almost daily.  In the end, she said she thought he should only attend half days.  HALF DAYS.  Unfortunately for her, we knew the law and I called our PACER rep and she had a great hearty laugh on the phone and we exchanged many lengthy emails and finally came to meet us for lunch and we 'forced' the teacher to keep him in the room all day every day...although nothing much was accomplished.  Interestingly enough, one of the great therapists we met at the previous school worked as a behavior therapist for this public school...but the teacher felt terribly threatened by her input so wouldn't have her in for any assistance hardly at all.  Because it was easier to call me and complain about him covering his ears than it was to ask a behavior therapist how to stop that behavior!  OY.

Eventually, after two years of not being able to drive an hour to get groceries, (because our town didn't carry the pull-ups he used or some of the food he ate) mow my yard, go take pictures, or even take a shower without fear of my phone ringing and having to go pick up Mason for a new, as of yet unheard reason; and after my husband's job turned into a joke, fair winds blew us over to Wisconsin.

Which brings me to Mason's current educational situation.  One I don't like to talk about very often, because: 1) I hate to jinx it, and 2) every time I think about it I start to cry.

Well, here Mas has been, in a public school setting again.  Which made us very nervous.  I steeled myself for constant calls to pick him up and them having no idea about behaviors.  Well, we've never been called about a behavior.  EVER.  And in two+ years, I think they've called me to pick him up twice, because he was legitimately sick.  They not only know about behaviors, they try to AVOID them from happening in the first place!  Imagine!

But the best part, by far, is the people.  His teacher, which can only be described as awesome.  Because appropriate words escape me right now.  Calm, laid back, organized, totally has Mason's number.  Everything Mason needs.  A quiet port in the middle of a storm.  Always thinking of ways to make Mason's days better.  Always trying to work with his speech device (they don't us his particular program here hardly ever so it's all new.)  Always positive.  (SUCH a nice change--I can't even begin to explain how amazing that feels!)  When you sit down to talk to your kids teacher and they tell you things about your kid and you have that feeling where you KNOW they KNOW your kid and you feel tears welling up inside and you hope the subject changes soon so you don't look like a blubbering fool?  That's what we have here.  I can't really find the words that express it.  But that's as close as I can come after two years.  Maybe I'll get better at finding words as time passes.

His aides?  Incredible.  Send notes home every day about what he ate, what he drank, what he did, what his mood was like, etc.  Every.  Day.  Know why that's so great?  Because our 19 year old kid doesn't talk.  At all.  So allllll of that is really important to us.  And I read it.  Every.  Day.  They are energetic, happy, positive, beautiful, sweet-souled people who somehow find it in their hearts to spend their days working with kids like Mas.  Not an easy job.  Doesn't pay enough either.  But they still do it.  So cool.

His bus driver?  Rules.  She is loud and happy and funny and punctual and energetic and Mas adores her.  And the list goes on.  Everyone we meet who knows Mas (but we don't know) comes up to him and says hi.  And every time I get a little knot in my throat and want to cry.  Even as I type this.  We live in a big city now!  This shouldn't happen here.  But it does.  We drove through Culver's a few weeks back and the girl in the window shouted out, "Mason!  How are you?"  And Mas rubbed his hands between his knees and smiled.

But the best part of all, which is almost too much to talk about, is the peer mentors and also just the teen traffic in general that passes by the room.  We had an IEP a few months ago and Mas was standing at the door giving high-fives to students (and staff!) as they walked by the door...and as far as we could see, EVERYBODY raised their hand for a five or said a few words to him as they passed him.  You can't even begin to know what that is like.  After all those years of him in a room with kids in bean bag chairs drooling as he used his speech device and no one responding...to this?  How does a person even begin to describe this?  And his peer mentors?  High school kids who volunteer to come into his classroom and hang out with these kids...maybe they play Wii bowling, maybe they go outside for a walk, maybe they go along as chaperones for field trips, maybe they just hang out, but how immensely cool and awe-inspiring is that?  To open Mason's iPad every day and see his selfies on there with neurotypical (read: normal) teenagers?  I cry every time.  And laugh.  And then cry again.  That is education that can't be planned or bought or written in an IEP.  That's just beyond.

So, I used to believe that everything happened for a reason.  Which, for awhile, kind of went out of fashion for me.  But now, I tend to want to believe that's the case again for us.  Because we for sure have met the people we're supposed to meet over the years.  And we certainly have Mas exactly where he's supposed to be right now.  Without a doubt.  To think about how far he could be right now if he had had this exposure all along is heartbreaking, but we can't live like that, can we?  We can only move forward.  So, for those of you who follow along with Mason's life and adventures, please know that right now, Mas is having the time of his life with his education.  If you've prayed, crossed your fingers, sent positive energy, given him a hug, or sent good thoughts to him, thank you.  It worked.

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