Freedom

I could've sworn I had a copy of Dante's Divine Comedy.  I sifted through book after book today looking for it to no avail.  I'd like to have it.  I'm just sure it would make me feel smarter.  But I must've sold the trilogy back to the college bookstore for beer money so I could drink until I puked at the feet of some gorgeous football player.  I used to be the girl who chose oblivion over books and boys on a regular basis.  Yeah I know.  That's probably why I don't feel very smart.

The reason I wanted the trilogy today is because I remember something about Dante talking to Sisyphus in Inferno.  I was trying to remember exactly what Sisyphus is being punished for.  Sisyphus is the ancient Greek guy who has to push the massive boulder all the way up to the top of a steep mountain only to watch it roll back down again, repeating this process for all of eternity.

If I remember right, this is his punishment for defying the Gods and for being an all around, general, selfish and self-centered asshole to everyone he ever came into contact with.  But lately I've been wondering if he didn't do something a bit more specific to deserve such a dark mythological destiny. 

I've just re-applied for ALTCCS for Isabel for the third time and I'm already being questioned about why she needs therapy.  "Well," I said, "The doctors keep telling me she needs therapy."

"Is she having behaviors?"

"Come over here and look at her bloody lip," I replied.

Silence.

"Every time you deny her there's more of a chance you'll be taking care of her for the rest of her life," I continued.

I'm not even kind to the state anymore.  I'm very tired of this.  They're coming two weeks from today for a new interview.  Apparently, the criteria changed slightly when Isabel turned six.  Thankfully they'll be focusing more on her "behaviors" now and less on whether or not she can pee in the toilet.

So how did she get a bloody lip?  Excellent question.  Are you comfortable?

Isabel was in a regular education classroom for pre-school last year.  She got off the bus nearly every day after school and cried in my lap for about fifteen minutes.  I grew to expect it and made sure that her brothers were in front of a movie at "drop off" time so I could give her my undivided attention.

She was never really able to tell me what was wrong.  Instead she would say things like, "They all looked at me," and/or "Why couldn't it be my turn?"  I knew these incidents in and of themselves weren't likely to cause a person to cry for fifteen minutes, sometimes longer, hours after they had occurred.

What slowly became clear to me was that it wasn't any particular incident that upset her.  Instead it was a gradual accumulation of stress throughout the day, partly due to her strange sensory issues (watch Temple Grandin, it's such an inspiring story - and Isabel's sensory processing is turning out to be a lot like Temple's) and partly due to not being able to communicate effectively and/or not being able to understand other people.  This stress would then be released all at once when she got to a safe place (home).

This is the reason I had her put at a new school in a self-contained kindergarten class for high-functioning autistic kids this year.  That and because they told me that they'd know what to do with her.
  
Well, according to her teachers, she has done so well in her self-contained classroom (academically she's not behind at all) that they've decided to begin the mainstreaming process.  So right after Christmas break, they put her into a regular kindergarten classroom in the mornings followed by afternoons in the self-contained classroom.

During the first two days of this she came home from school and cried until dinner time.  Then when I tried to get her to eat her dinner she started screaming.  I sent her to her room and there she kicked her bedroom door as hard as she could and gave herself a bloody lip by banging her face repeatedly into the wall.  She did this for roughly two hours after dinner the first night and for only about forty five minutes the second night.

On day three I decided to steal a sensory tool idea from Cale's occupational therapist.  He told me that Temple Grandin's "squeeze machine" not only helped her calm under extreme stress, but that it also helped her overall stress level so that she was able to stay calmer throughout the whole day (I have to use what I learn in movies because Isabel doesn't get therapists of her own until ALTCCS decides she does).

So I bought ACE bandages and wrapped Isabel's arms and legs in them the moment she came in the door after school.  She looked like a little, baby mummy.  I left the bandages on for about fifteen minutes during which Isabel looked at me with immense relief and said, "That feels soooo good Mom."  So we started doing this after school every day for fifteen to twenty minutes and the tantrums stopped.

I wrote both her special education teacher and her regular ed. teacher to let them know what had been happening with Isabel in the evenings.  I explained that it was probably her usual accumulation of stress aggravated slightly by the change in her routine.

I told them about the sensory tools (the ACE bandages) that were working at home and asked if they would have the school's occupational therapist use a weighted vest (a sensory tool commonly used at school - same basic effect, sort of, as the ACE bandages) on Isabel for fifteen to twenty minutes each day after she got back to the special ed. classroom in the afternoons.  I didn't think this would be a big deal and I thought it might help Isabel not have to wait until almost 3:30pm each day to be relieved.  Then I would also use the ACE bandages after school each day and between the two, hopefully, her overall stress level would stay lower.

I also asked them for documentation about the social skills support they're giving her (a brief weekly description of one of her social interactions - again, not a big deal).  It's actually in her I.E.P. that they'd send me these descriptions but they've never actually done it.

Both teachers replied to my e-mail with, and I'm paraphrasing, "We are so surprised at what you're telling us.  We haven't seen any disruptive behavior at school.  Isabel's doing great here."

I sort of expected this response from the regular ed. teacher, but getting this response from the special ed. teacher too was really quite unnerving.  This guy teaches Autistic children exclusively, has for years, and is considered an expert Autism teacher in the area.  I kind of wanted to write him back and tell him it's time for a brush-up on his training, but I didn't.  I paused.  And prayed.  And I still had to call a friend for a brief venting session.  But I had my mind back within the hour. 

Then, later the same day, they wrote me again informing me that they had pulled Isabel out of class to talk to her about why she kicked the door at home.  They told me that Isabel hung her head down and said, "I was mad at Mom for making me drink my fruit shake."  If I had been there I would've followed that up with, "Yes, she's right.  This happens nearly every evening at dinner time.  However, it hasn't caused a tantrum in almost two years now.  Let alone a two hour long tantrum."

The part that's really discouraging (and somewhat revealing) to me is that I think they might have actually expected her to be able to tell them the truth.  What did they expect her to say?  Can you imagine any six year, let alone an Autistic one, saying this?  "Listen.  What I am experiencing shouldn't be judged as good or bad.  It has nothing what-so-ever to do with defiance.  It's simply a gradual accumulation of stress throughout each day and is due, in part, to the fact that I feel every single sensory experience waayyy too intensely.  It's also aggravated by the fact that I think in a completely literal way and I don't fully comprehend the meaning of peoples' words, actions, or facial expressions.  Therefore I often sense, but don't understand why, I'm misunderstanding or being misunderstood."

"This stress becomes more and more intense as the day progresses and makes my mind and body feel out of control, like I might actually, literally, fly away.  Sometimes it actually hurts me.  It's very uncomfortable and makes me want to cry.  But instead of crying at school where I want more than anything in the world to be loved and accepted, I try very hard to wait until I get home (or to another safe place).  Then, when triggered by something small, I go insane.  I'm able to release this stress appropriately (ie - before it's necessary to go insane) by being "squeezed" and/or "grounded" in some other way before I reach a breaking point.  An effective tool for this would be a weighted vest (and/or other O.T. support) for fifteen to twenty minutes during the school day in addition to the I.E.P. specified social skills support."

Instead, of course, she told them about the fruit shake.  Then they preceded to scold her with, "kids at school do not kick things or hit things when they're mad."  So she got in trouble at school for kicking the door at home.  Excellent.  Now no place is safe.

Luckily though, this probably isn't what my daughter actually heard. I don't think this could've translated, in Isabel language, into being in trouble.  The statement was said as a fact, "kids at school do not kick things or hit things when they're mad."  There's nothing about being in trouble in that statement nor is it clear what this has to do with her kicking the door at home.  Isabel probably thought, "Huh.  That's very interesting.  I wonder why she's telling me this."  And the next time Isabel sees someone at school hit or kick something, she's going to wonder why that nice lady lied to her.

The teachers informed me that if Isabel was having problems that those problems were happening at home because of fruit shakes, not at school, and that the school's O.T. would continue doing the same things she's always done.  They also informed me that they could send me descriptions of her social interactions but that they couldn't see how it was necessary due to the fact that they'd all be positive (I'm not kidding).  Then they concluded with, "She is going to thrive in her new environment."

Uh huh.  She is going to "thrive" until the honeymoon period of being in a new class wears off.  Then she's going to get comfortable in your class and stop trying so hard to be "good."  And one day, quite suddenly, that cute, sweet, well-behaved little peanut with the giant green eyes and long, beautiful eyelashes that you thought you had in your class?  Her face is going to split down the center and peel right off of her head, revealing the rest of her true colors.  Maybe Cale's occupational therapist's ideas won't sound quite so stupid at that point.

Sigh...

I already have a rough idea of what my rights are as a parent participant on "the I.E.P. team," but I'm looking for an advocacy class to sign us up for anyways.  I think we should learn the laws and try to become our own advocates.  It could get awfully expensive to hire an advocate every time we come across an I.E.P. team that wants to minimize it's workload.  And yes, I realize that my daughter is only in kindergarten.  But we have two Autistic kids and twelve years of school to get them through.  It can't hurt to be armed with the facts. 

And all I can do to try to get Isabel therapy is keep re-applying for ALTCCS (state medicaid basically) and hope they'll help her.  That and I can occasionally call Shane's medical insurance company and remind them that they're bastards for not covering anything for Autism.  But these are the only bits of footwork I can really do.  And I'll do them over and over and over again because when I'm on my death bed I want to know I did everything I could for my kids.  But the rest of it, the results, what will become of Isabel and Cale, I'll have to leave up to God.  Just watch.  The joke will be on me and Alden will turn out to be the difficult one!

You know?  God's done a good job with me.  There was a time, not even six months ago I bet, when talking (and writing) about this stuff made me absolutely crazy.  I somehow felt personally responsible for the suffering of my kids and I thought that if I could just figure "it" out, get "it" right, get "it" to go a particular way, whatever "it" was, then maybe we could all be okay.  I probably felt like this because my heart was still so heavy about my childrens' newly discovered condition, but it was also because I didn't have the faith yet that I could be okay no matter what. 

It's been a dark year that way, getting to that kind of faith.  I've, personally, had to take a good hard look at all of the worst possible outcomes for my children.  I've had to walk head on, straight through the thickest parts of all the various possibilities and feel the hopelessness in each one of them.

I had to come to accept, first and foremost, that my kids will never become "normal."  Then I had to realize that regression is as common as the rain, that just because one of my kids manage to reach a certain point through diet, medication, therapy, whatever, doesn't mean they won't slide right back down to where they were before within just a matter of days.  I had to give up hope of them getting better and/or staying better.

Just because Cale says a few words today, doesn't mean he won't be silent as a ladybug tomorrow.  This one I've experienced over and over again.  And just because Isabel hasn't banged her head on the ground today, doesn't mean she won't do so tomorrow.  In fact, she might really hurt herself one of these times.  I've not only had to come to accept that one of these times I might not be able to get there in time to stop her, but I've also felt it necessary to take action to protect myself.  I've made the doctors and the state document her "behaviors," AND the fact that I've been begging for help for almost three years now, over and over and over again so they can't act shocked should she one day crack her skull.

I had to come to accept that peace and predictability might never be a reality in my home again.  Ever.  Not even after they've grown up.  That gone are the days of being able to do what I want to do when I want to do it (grocery shopping for example).  And that the self-harming and the screaming might never stop.  Peace and predictability might actually be gone forever.

I had to search for and find the lowest common denominators, the worst case scenarios, the stories about Autistic people who never learn to talk, who can never look at you and smile, who never become potty-trained, who become so violent they can't stay at home, who go live in institutions and who might be able to visit the beach with their families on the weekends depending entirely on a whole variety of little things, who might be forgotten about forever after the death of their parents, etc., etc., etc.

I had to remember the first time I visited my nephew, the one who sat in his room in the dark in front of a T.V. who couldn't look at me, didn't smile, didn't in any way acknowledge that we were in the room.  I had to remember trying to look into his eyes.  I had to remember that I thought, "I could never survive a child like this.  I'd die from a broken heart."  Then I had to make a decision that I would indeed live for him and all those who are like him.

I had to read about the Autism parents who said they had to learn to live without hope.  I had to listen at support group to the parents who honestly didn't know how much longer they could do it all for.  And I had to hear about the few who actually decided not to do it anymore.  I had to listen.  Had to feel it.  Had to let it sink to the bottoms of my toes.

I had to grapple with all that hopelessness until I got so tired that I simply had to stop grappling.  Then I had no choice but to accept my fate and go down.  I quit fighting and just sunk deep under the weight of it, hoping I'd eventually get used to not being able to breathe.  I thought I'd have to learn to embrace being crushed.  Enjoy it.  "Have faith!" as the drippy, blond church goer once said.  I thought this hopelessness would just be my reality from then on.  That that's what true acceptance of reality meant.  I finally surrendered to it. Accepted it with every single cell in my entire body.

Then one day I simply fell out the bottom.  And I was free.  Free of more than just hopelessness.  My children were okay, and my nephew, the parents at support group, etc., etc., etc.  They were all okay, ARE okay, whether they get better or not or change or not, no matter how things go or don't, in this life of ours.  It's okay.  And I've had a terribly difficult time trying to get real upset about anything since.

Through the hopelessness came the biggest and most unexpected gift.  I had always wanted to be okay no matter what.  I just didn't know that that's what I had always wanted.

Suddenly I'm always noticing all these wonderful little things about my children, like what they do for the people in their daily lives.  For example - The bus driver's assistant has been trying every single morning all year long to get Cale to say, "bye bye" to me when I put him on the bus in the mornings.  And this morning he looked right at me and said it for the first time, "bye-bye."

Now, you know and I know that it's a total crap shoot as to whether or not he'll ever do that again.  But she doesn't know that.  She sucked in a big gasp of air as her jaw hit the floor.  She looked wide-eyed at Cale, then me, then Cale, then me, and finally said, tearing up, "He said it!"  And I savored that moment like it would be the very last.  What a gift.  Good job baby Cale, not only for saying it, but for putting a spark of happiness in her day.

Albert Camus wrote an essay published in 1942 in which he talked about Sisyphus.  Camus was a French existentialist who believed that nothing in life, of and by itself, has any meaning.  That nothing happens "for a reason."  Camus believed that life itself is essentially pointless.  Like Sisyphus's task.  Therefore happiness cannot be found by getting things to go a certain way or by reaching a certain goal.  In Sisyphus's case, by finally getting the rock to the top of the hill.  It's just going to roll back down again and there is no deep and meaningful reason why.

He believed that life means what we make it mean.  That we can create just as much (or just as little I suppose) meaning as we want to in this life.  That the pleasure can be in the task itself (pushing the rock up the hill), if we put it there. He said that once Sisyphus fully accepted the hopelessness and futility of his task, and the certainty of his fate, only then could he reach "contented acceptance."  He concluded this essay with, "The struggle itself is enough to fill a man's heart.  One must imagine Sisyphus happy."