Welcome to My World

Regardless of where we are, life comes at us. If we want to cherish the moments, they tend to pass us by faster than we can savor them. If we would rather skip a day, it seems to linger endlessly. But life is what it is, and we have to make the most of what we have and focus on the good aspects, large or small, to truly relish our life.

Saturday, January 21, 2012

Perspective

Life is what it is.  But what it is to you and what it is to me are two entirely different entities.  In fact, there are as many views on life as there are people in this world, close to 7 billion, I believe.  It all depends on a simple word:  perspective.  Definitions for the word are as follows:  A particular attitude toward or way of regarding something; a point of view; true understanding of the relative importance of things; a sense of proportion.  Aha!  These two definitions seem to be contradictory, don't they?  A particular attitude versus true understanding...well you just may be about to find out, as I did two weeks ago, they are and they aren't.

Two weeks ago was a little rough.  Here it was, Monday afternoon, and Nyssa was in one of her usual bull headed moods while we were in the car, no less.  The sad aspect of the story is that I can't even remember what it was about anymore, but it unnerved me to no end.  She and Nathaniel were having a spat and she wouldn't cave one iota.  I tried reason.  I tried reasoning with her.  I tried explaining the situation to her.  I tried telling her just to stop.  I tried telling them both to stop.  I tried telling them to stop or I was going to pull over.  I did.  I was almost pulling my hair out trying to get Nyssa to just leave the subject alone and to stop trying to get Nathaniel to see it her way...because she was wrong.

By this point, I was a very unhappy camper.  Gabriela was tired because she had been awakened from her nap to pick up her siblings from school.  Benjamin was hungry.  Nathaniel had been in a very good mood but was now starting to have a meltdown due to his sister's attack, and Nyssa would just not give it up.  I almost pulled my hair out (remember that phrase in a couple days' time, will you?  Just stash it away somewhere in your brain if you don't mind) and had crossed the "enough" line 2 miles back.

I looked at Nyssa and just threw my hands in the air.  "Nyssa, just let it go!

"But he's wrong!" she insisted.

"No, he's not.  You are.  Regardless, I told you to behave and to be quiet.  That is enough!"

She would not stop.  I am not proud of the following words that proceeded from my mouth.  I said something to the effect of growing up, behaving, listening to what I said, obeying, and to "stop acting like a baby" who didn't know better when she is obviously old enough to obey the words "stop" and "be quiet."  I told her even Gabriela could follow those simple instructions and she needed to just obey.

"But," she began again.

"I don't want to hear it.  I don't want to hear another word come out of your mouth until we get home," and I started the minivan again and got back on the road.  There was finally silence, though I cannot say it was peaceful.  At least, there was momentary silence.  What came next just brought me chagrin and complete shame.

"You're a baby," Gabriela said, to nobody in particular.  "You acting like a baby, Nyssa."  Uh-oh.  "Taniel, you're a baby.  Benjamin, you're a baby.  Mommy, you acting like a baby," she giggled away.

At first, I was just angry.  In a too controlled voice, I said, "Gabriela, that's enough."  That only egged her on, not seeing my face or hearing the frustration emanating from my mouth.

"You a baby.  I not a baby.  You a baby.  You and you and you and you a baby.  Mommy's a baby."

Yeah, out of the mouths of babes.  I had lost it and now given my youngest something to say to bring me to shame.  It was new territory for me, because I had forgotten the power of words on a child.

Due to the Autism spectrum, none of the other three had ever just repeated what I said like that.  If I told them to say something, they would parrot me, but they never just picked up what I said and started repeating it back to me.  In fact, they had trouble processing what I said to them period, losing half of my words or more.  Only through therapy and hard work have they finally gotten to the point where they are able to process things better.  At least, I knew this was the case with Nathaniel.  I never knew Nyssa had any trouble with it, but at this moment it dawned on me that she had never parroted what I said randomly.  There was always a preexisting concentration on what the words would be before she would repeat after me.

That was Monday.  Tuesday was my visit to the Marcus Institute, the follow up from the testing Nyssa had done there a couple of weeks prior.  I was to receive their findings.  That day will be forever etched in my mind, because my entire perception regarding my daughter changed.  The results rocked my world.  I never saw it coming.

As expected, the doctor concurred with the diagnosis of Asperger's Syndrome and the ADD Inattentive.  What wasn't expected was the fact that all her Executive Functions are rather lacking.  Her will power is very high and set, almost incapable of moving once her mind has been determined, to an unusual degree.  Her ability to process verbal stimulus is low.

Ok, so now what does all this mean?  We'll take it one step at a time.  Executive functions are those functions that help us to navigate our way socially, emotionally, organizationally, and environmentally.  They help us connect past actions with the present.  They help us with planning skills and navigating our way through time and in space.  Executive functions give us an innate awareness of everything around us and the ability to process that knowledge to our advantage.  They help us learn visual cues that tell us to not speak until it is our turn and to stop speaking in order to let someone else have their say.  They help our working memory, allowing us to be able to do more than one thing at once or to follow multi-step directions. 

Think of a company.  It has a Chief Executive Officer.  That officer is responsible for making sure the proper plans, implementations, and goals are executed.  If the company has a bad CEO, the officer can bring the corporation to its knees.  If it has a good one, the CEO can bring the company to newer heights.  That is why they get paid all the big bucks.  If the company gets in hot water, the CEO is usually the one who gets axed.  If the CEO is attentive to the company's needs, both in entity and in employees, he will be able to adjust, plan, and repair a problem mid stream.  If the executive in charge refuses stubbornly to bend in the right direction, he will destroy a company.  Interestingly enough, in the same way, the executive functions are directly related to the ability to shift gears in the mental capacity. 

That brings us to Nyssa's willpower.  It's high.  Very high.  I've mentioned before in my rantings how she will just not yield, regardless of the situation, unless she is shown, logically, infallibly, to her understanding, that her course is wrong and needs to be adjusting.  Then and only then is she able to be persuaded to change her mind.  Without that, you may as well just throw in the towel, because she is not going to budge.  No form of bribery, threats or punishment will sway her, neither will your own reason.  She's not trying to be disrespectful.  It's not because she wants to see what will happen if she pushes my buttons.  It is the way she is wired.  She's a rock.  Where does she get this from?  The apple doesn't fall far from the tree.

As a kid, when it came to character traits, I always got the certificate that said, "determined."  I was not easily swayed; I couldn't be budged.  I was harder to be moved than a hardhead catfish that you hit over the head with a hammer to kill.  Under specific circumstances, I would accept any punishment, not in defiance, but in my firm belief that I had done nothing wrong.  I have been painstakingly honest about my natural disorganization, my messy house, and about my own struggles to keep it clean.  I have only in the past year begun to overcome my weaknesses in spacial organization.  As for time management, my mom can lose track of time, thinking only 5 minutes has gone by when it has been 2 hours.  Fortunately, I can at least stop and judge what time it is and usually be correct within 10 minutes...when I actually stop.  If I'm not being conscious of the time, it can fly by.  I know where my daughter gets it. 

I have told Nyssa on occasion to try to do her best and she states that she is trying her best.  On the piano, I would tell her to practice.  She would sit there on the bench doing nothing, not even putting her hands to the keyboard, but she was doing her best.  She was sitting there, even though (as I now know) everything within her told her to leave the bench.  I saw it as defiance.  The doctor let me know it's not.  She is just sometimes unable to see a different viewpoint, incapable of changing once she has made her decision, and sometimes it is all she can do to just try to figure out one instruction at a time.  She pulls on her hair, hard, if she is given more than one direction at a time.

Of course, that makes part of our job as parents more difficult; we have to find a way to help her see things our way on her own.  We have to give the right nudge here, the little suggestive message there.  We have to learn why she sees things the way she does.  That will help us to draw her to a better conclusion on the occasions she is wrong.   I suppose it comes along with seeing the glass as half full or half empty.

In life, we can get caught up in situations that are beyond our control.  We can get caught in a rut because we cannot see any other way.  There may be a way to escape but we are so caught up in the view which we have that we lose the ability to adjust our focus and look at it from the grand scheme of things.  Somebody else may have a better view but because we refuse to budge on our perspective, we make things harder on ourselves.

When I discovered these traits about Nyssa, a part of me felt so bad about my attitude toward her that day.  She was truly incapable at that time of seeing things from another point of view.  In her eyes, it was absolute truth.  My job as her mother is to help her learn the difference between the truth and her point of view and to direct her towards that infallible truth.  If she can see things as they truly are, then she will have a distinct advantage because once it's in her noggin, it's like Prego spaghetti sauce:  it's in there.

The same truth goes for whether she has done her homework correctly or if she truly knows how much we love her.  Sometimes there are only two perspectives:  the truth and a lie.  I want her to be able to discern the truth from the lies.  I want her to know that, regardless of her difficulties, she is special and she is important, that she matters.  I want her to know that book smart doesn't mean wisdom.  I want her to know that she can come to me with a problem and I will never turn her away when she really needs help.  I want her to be able to look at that glass and know beyond a shadow of a doubt that, because there is water in it, and it reaches the half way point, that it is half full.  I don't want her to just see things from her point of view:  I want her to be able to see things in truth.

Friday, January 20, 2012

Musical Chairs

When I was a child, I used to love to play Musical Chairs.  All the children started out in a circle, chairs facing outward.  There was always one more child than chairs.  The music would begin and we would all circle around the chairs, anticipating the time when the music would stop and we would scramble to sit in a chair before they were all taken.  We hardly ever sat in the same seat twice due to the nature of the game; we moved around a lot and landed wherever we were when the music stops.

Poor Nathaniel has been playing musical schools for the last 3 years.  He was at one school for Pre-K, he moved to a different school for Kindergarten, yet another school at the beginning of this school year, and has finally found his chair this January.  He has had 3 incidents so far, every single one of them minor, has not been to the principal's office, and only yesterday went to the sensory room for the first time; this, not because his behavior warranted that he needed it, but because he had been curious to see it, so his teacher took him. 

 He told me today that he had a mostly good day.  He had some difficulty, but told me that he got to go to the Quiet Zone.  What is this magical place in his room that kept him from flaring up and turning into the Incredible Hulk?  It's a desk against a wall that has a set of soundproof earphones.  He simply sat there with the headset on and got to escape from the noise until he was ready to return to his work.  He chose that zone, just like he chose the mini trampoline yesterday.  He has completed his work almost every single day and doesn't even have homework because he completes that as well!  What a turn around from last month, even!  He is truly flourishing there.

Every day for the last two weeks, I have seen the return of my happy little boy who I haven't seen truly since pre-k.  He loves school, he is happier at home, and he smiles.  Oh how he smiles!  I am reminded of the scene from Hook when the little boy looks at Robin Williams' all grown-up and grouchy Peter Pan and plays with his face for a while.  Then, he twists the face into a smile and says, "Oh, there you are, Peter!"  That is exactly how I feel now when I see my older son get off the bus and meander into the house. 



Seeing my children happy or sad affects me, deeply.  How can it not?  They are my own flesh and blood.  But he is a reminder of myself, as well.  The last few years I have been wandering around in a daze, trying my best at times to hold my head above water, getting glimpses of that joy from time to time, knowing that it's there, somewhere, and I have just had to trust that the flight of happy thoughts will return someday to stay.
But I am learning, once again, remembering how to be able to silence everything around me and to ignore the chaos around me, not letting it bother me to endless distraction.  I am seeing that it really is alright to get off the merry-go-round from time to time and do my own thing for just a little while.  It doesn't take too long, just a 5 minute logic puzzle here, a 3 minute song on the piano there, or, gasp, a 7 minute opportunity to use the restroom by myself with the door locked!  Aah, now THAT is a peaceful moment if I can find the earplugs to ignore the cries of children who have suddenly realized they must have me that very moment and are disturbed that I deign to lock them out.

Just as Nathaniel is learning how to cope, slowly but surely with those things around him, so am I.  I am even enjoying playing with them again.  We've been painting on the art easel the last couple of days, painting with the dot paints or the brushes that came with the easel paints.  We've been singing together and building blocks together.  Who knows, maybe tomorrow we'll even play musical chairs with a twist...no chairs taken away because in this household these days, everyone is a winner.

Thursday, January 12, 2012

Winter's Nap

Many creatures in North America, and other continents alike I am sure, like to take long winter naps.  They eat their fill in the fall to get a nice, good layer of fat and insulation, find some cozy little den into which they can possibly just barely wriggle, and then hunker down for a blissfully sweet slumber through the coldest dark of winter.  These animals avoid the hardest frosts and the coldest snow by staying peacefully in their hidey holes, slumbering sweetly with whatever sentimental dreams come their way.  They wake up a few months later and quite a few pounds lighter, refreshed and ready to face the dawn of a new year, with all the excitement and rebirth of the wonder of the world in the spring about to surround them. 

I am happy to announce that Nathaniel has received a new start in the dead of winter.  He had quite a rough time this last semester and, in spite of the wonderful, patient help of his teachers, though the entire staff of his school worked lovingly with him, he was still not ready to make the transition to that kind of classroom.  I took note of the extra effort his educators and the administration, amazed at their resourcefulness throughout the year as they went above and beyond the call of duty to help him.  I am utterly grateful for all they did for him.  He was somewhat of a celebrity around there; he had his own flyer and everything which was passed out to the entire staff. 

My dear little Nathaniel sat in a chair, giving his sweetest smile for the camera, posed on the paper looking as if he had not a care in the world.  Beside the picture was his name with a message beside it. It was a warning that he runs.  If he ran passed any of the staff members, the paper listed a set of guidelines to follow to help lead him back to his home base of safety.  Since he does tend to run, great care was taken to keep him as safe as possible and out of the street, away from the woods, and out of the businesses nearby.  Throughout the year, it was hard to imagine that this fanciful little smiling boy was quite the challenge.  Both he and the staff learned quite a great deal.  In the end, however, we all had come to realize that he just needed something more than what they were able to offer.

One of the women in the system who has worked tirelessly with Nathaniel understands my struggles.  Her son was a lot like mine, and she has been a true pioneer in working to help high functioning Autistic children find their niche in the school system.  Without compromising their education and realizing their potential, she has helped bring about a program, a very new program, in fact just begun this year, in which they have their own classroom but can still be integrated in the classroom. The system is this:  a classroom for highly functioning Autistic children, highly intelligent, without academic difficulties, with behavior difficulties due to sensory and other processing issues.  There are 4 such classrooms in the North Fulton area.  She invited me to visit one such classroom, a mere 2 1/2 miles from my home, to see if we thought it would be a good fit for Nathaniel.

I was utterly amazed!  In the classroom itself was a small array of sensory related items:  a mini trampoline, a beanbag, some cushions, a set of silencer headphones, computers, and other stations.  Twice I noticed signs that boys were getting overloaded.  Both times, I watched as the boy went to a sensory outlet of choice for a minute or two and then went back of his own accord to do his work.  A minute or two!  That was all it took for them to calm themselves!  I think about the times when it would take 15 minutes just to get him to stop running or fighting to run and here I was watching these boys showing the same signs of putting hands to their ears and rocking, mumbling motions that I have seen my son do countless times, and yet they were able to self regulate inside the classroom. 

I was shell-shocked beyond belief, holding baited breath, eager to see what other wonders I would discover.  The sensory room was just as large as the classroom with many other devices to help them, a room into which they would go once or twice a week, alongside a speech therapy room which was connected and divided merely by a tough floor to ceiling pull partition that could be opened up if needed.  For the first time in a while, I began to have the hope that Nathaniel would be able to have a place he could go to where he would feel free to be himself and yet be able to learn how to control his emotions.

Of course, even after I saw the classroom and ecstatically agreed hopefully that this was indeed an environment in which I thought Nathaniel would thrive, I knew the decision was still up to the entire panel of the Support/IEP group.  Two days later we all participated in a three hour meeting that culminated in the agreement that my son should try this option.  The wonderful aspect was that he would be in the same classroom we visited, at that very school so close to my home.  It was also the home base of this wonderful woman and another Autism specialist who helped with more insight into my son's anxiety and fight or flight difficulties.  I knew then he would be in good hands.

Nathaniel started his new classroom at his new school, riding a new bus, after Christmas break.  It has been a week now and he has had no meltdowns.  He started to try to run twice, but saw something in his room that would help him feel better and went to it for a short time.  He has received smiley faces in all 6 areas every day for 7 days...except for the two I mentioned.  40/42, 7 days straight with no big tantrums, no fights, no spitting or kicking, no leaving his safety room.  That is better than his record has been since pre-k.

His struggles are much like my own in my quest to be the best mother and wife I can be.  I have tried, but often found myself falling short, disappointed at my failures.  I had to readjust, find a way to bring more helps into my realm of influence, in order to keep from treading water.  The tools I have found are sitting at the computer, writing and focusing on the positive; I have been putting on the headphones of singing and ignoring the negative voices.  I find myself bouncing to the trampoline of different ideas and options to take in dealing with my children and talking about the issues that really bother me.  I use the cushions of my faith to help soften my fall when I throw myself down in the beginnings of frustrations.  Most importantly, I am allowing myself to be squeezed in a beanbag of support from other parents with ASD children and finding out that I can also be a beanbag for them.

As a family, we were not able to hibernate through the long winter that has lasted for two years.  We have had to weather the wind, taste the cold of the snow, and receive the brain freeze that comes with taking in too much ice at a time.  But, like those woodland creatures, we are beginning to stir to a new sight, listening to the rebirth of hope and watching the joy and wonder return to our Nathaniel's face as he explores the spring of a new era and looks expectantly at the adventure of the awakening path opening up before him.