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Monday, November 4, 2013

Guaranteed

I dedicate this blog entry to Serena Sutherland, who died on Halloween Day, and who was the first person to identify Finbar's special relationship with gravity. May her soul be at peace.


A few years ago I consulted with a so called Shaman, a modern day energy healer named Sudama.  I wrote about this (click here to read).   Two things that Sudama told me made a lasting impression.  Every Halloween I am reminded of these two things and the change in perspective it gives me.  He said:

1) That Finbar had died a very traumatic death in his previous life, which was recent.  Sudama likened it to a World War II pilot being shot out of the sky and falling to his death, all the way knowing that his death was coming, that he was heading toward earth.  He said his body was smashed into the smallest particles of matter that exist, such was the impact. His soul apparently still was (is?) traumatized from this death. 

2) Sudama said that upon seeing Finbar enter our living room, that he kept hearing the words "Space Shuttle Pilot" repeated in his head.  He said that he didn't know what this meant.

Sudama's message to me was that I could choose to believe my son had a "disease" or "condition" that had a label (autism). Or I could change the story and choose to believe something else, such as what he was telling me - that all this odd behavior was the result of a traumatized soul. To this day, when I have the presence of mind to be able to change my story about Finbar, thinking of him as a Space Shuttle Pilot brings me peace. Wouldn't an astronaut who commands a space shuttle have to be an exceptional human being?  You only have to watch Sandra Bullock in the new movie Gravity to find out ;)


Ten years ago today, the Space Shuttle Columbia was just 16 minutes from landing at Kennedy Space Center when disaster struck.
Parts of Columbia fall to earth
A few days after this encounter, by coincidence, or perhaps not,  Finbar went to the library and randomly checked out many books on the space shuttle.  While I was reading one of these books to him, we came to a page about the tiles. It explained how they protect the shuttle from burning up upon reentry into the earth's atmosphere.  Finbar pointedly asked me what would happen if the tiles fell off, which I thought was an interesting question from a four year old.  In the moment that I told him that the Space Shuttle would burn up and that that very thing had happened a decade ago, I was overcome with a feeling that Finbar had been on the Space Shuttle Columbia that blew up when the tiles flew off.  This event occurred in 2003. Finbar was born in 2004. Recent. Certainly his body would have been smashed to the smallest possible particle with such an impact.

Since then, on the Halloweens that Finbar does dress up for, he has dressed up twice as a pilot, and this Halloween, as a Space Shuttle Commander.  This Halloween, I was once again reminded of Sudama's "mythopoetic" space shuttle pilot story.  I wonder, is it possible that Finbar's old soul "comes out" on all Hallows' Eve?   And thus he chooses these costumes and speaks like a pilot or shuttle commander?  All Hallows' Eve (Halloween) is the beginning of a liturgical time for remembering saints (Hallows), martyrs and all the departed.  All Saints Day is the day after Halloween, and All Soul's Day is Nov. 2.  These are days during which Christians pray for the departed who have not yet been purified and so have not yet reached Heaven.  These souls who are in "purgatory" are there only temporarily until they have been wiped clean of  sin.  Prayer is meant to help wipe them clean and move these souls along to Heaven.

Seeing Finbar dressed up as a shuttle pilot and proclaiming to all that he would become a modern day version of an astronaut pilot someday,  I wondered if I should change my story again and simply pray for his soul to be at peace.   Maybe this life on earth is his soul's purgatory?  But then I ask myself do I want my little space shuttle pilot to go away? Not really. Sorry dude, you're stuck here on earth with me, at least until I go to purgatory. And maybe you just have autism after all...

Recently, I have been listening to an Eddie Vedder tune from the Into the Wild soundtrack. It is called Guaranteed, a beautifully poetic song that always brings my son to mind.  There are a couple of lines that are simply, Finbar...

Got a mind full of questions and a teacher in my soul   - his past life soul perhaps?

 Owning me like gravity are place that pull -  Sudama, Finbar's former occupational therapist, Serena, who coincidentally died this Halloween, and Finbar himself all declared at different times that Finbar had a special relationship with gravity...Sudama said it was because of his falling to earth. Finbar said that gravity was his friend. It meant that people weren't actually pushing him down...

The entire last verse is just, Finbar truly living Life on the Fringe...

Here is the link to the song and the lyrics. I hope you think of my little space shuttle pilot whenever you hear it :)





On bended knee is no way to be free
Lifting up an empty cup, I ask silently
That all my destinations will accept the one that's me
So I can breathe

Circles they grow and they swallow people whole
Half their lives they say goodnight to wives they'll never know
Got a mind full of questions and a teacher in my soul
And so it goes

Don't come closer or I'll have to go
Owning me like gravity are places that pull
If ever there was someone to keep me at home
It would be you

Everyone I come across in cages they bought
They think of me and my wandering but I'm never what they thought
Got my indignation but I'm pure in all my thoughts
I'm alive

Wind in my hair I feel part of everywhere
Underneath my being is a road that disappeared
Late at night I hear the trees they're singing with the dead
Overhead

Leave it to me as I find a way to be
Consider me a satellite forever orbiting
I know all the rules but the rules did not know me
Guaranteed

Sunday, October 27, 2013

Eligibility



"Let’s be clear here. We are not doing assessments to determine eligibility for special ed services. No one is questioning Finbar’s eligibility. So we need to decide what kind of information we want to get from the assessments that would be useful to the process of determining appropriate goals and supports. But again, we are not going to question his eligibility.”  With that, the school psychologist smiled. This month was the time for both the triennial round of assessments to determine Finbar’s eligibility for special education and his annual IEP (Individualized Education Plan).   It was a time to look back at Finbar's progress or lack thereof and a time to set goals for the next 12 months.
The special education process is a perfect example of Life on the Fringe.  Our school psychologist who is an insightful confidence instilling woman seriously questioned Finbar’s diagnosis at his last triennial assessment. This time, she was trying to alleviate any fears that I might have that Finbar would not be deemed autistic by the school district after his triennial diagnostic assessments, and would therefore lose his services.  I should have been relieved as she intended for me to be. I was to a certain extent. On a good day of testing, Finbar could easily charm his assessor and pass for a fairly normal kid - that is what happened during his last round of assessments.  But the psychologist had witnessed Finbar's traumatic start to the school year and no, she would not question his need for accommodations this time.

At the same time, I felt a certain regret that we have not managed to ween  Finbar off special education services and the web of paperwork and advocacy that goes with it.  I had been so sure that this was possible when he was in Kindergarten. Third grade seemed so far away then.  I recall announcing at his 1st grade IEP meeting, “my goal is to have Finbar out of this whole special ed process by the end of 2nd grade. I think that is entirely doable. But with respect to aid in the classroom, let’s not pull the rug out from underneath him too soon.”  Good, but slightly wishful thinking, mom. He still needs the rug, albeit less often.  He has finished 2nd grade.

Now with the upper grades looming on the horizon, and all the social and academic pressure that comes with that phase, I tell myself to be grateful that Finbar won’t have to weather all that intensity without someone cutting him some slack and watching his back. The fact is, that with an IEP in place, we and Finbar have legal rights requiring the school system to accommodate his quirks.  The IEP basically gives me the right to call a meeting at any time to discuss how the school should be meeting my child’s needs.  I can ask for supervision on the playground and on field trips.  I can ask for testing accommodations.  To a certain extent I can request who I wish his teacher to be. And for the most part, the school has to accommodate my requests.  People pay $15k a year for private school and don’t necessarily get that right. I feel better already J

I wonder what they would think if I wore this to an IEP meeting?
 

The day of Finbar’s IEP meeting, it just so happened that the perfect storm of Bill, me, Finbar's teacher and the special education teacher heading toward the meeting room met Finbar who was riding his scooter on his way home.  He stopped and looked at us quizically.
 “Hi.  Whatcha doin?”  
 “Oh, just going to have a chat with your teacher, Bud.”
“Oh. I see.  Can I come?” 
“No, grandma’s waiting for you at home. Go on home bud.”   
“But why can’t I come?” 
“Because you are supposed to go home. The meeting is just for adults.”  
“Oh, alright then. Bahbye!”  

With a wave, he scooted away looking back at us over his shoulder, wheels spinning in his head.  Busted.  The light bulb went on in my head.  I can no longer hide the fact that I will be talking to the school personnel about him frequently.  He must know that he just went through umpteem rounds of testing and observation.  I would have to tell him about the meeting and our discussions eventually. If he is old enough to scooter home on his own, then he is old enough for me to be honest with him.
 
“I was surprised that he kicked me the entire time I was assessing him.”

“What jumped out at me this time around really was his inability to focus and stay on task.”
“He was rocking his chair and had his feet up on the desk. I asked him if he could tell me what he was supposed to be doing. He responded, ‘Oh I thought you were going to tell me to get my feet off the desk.’ Yeah, that too, I told him.”
“At one point he just walked out of the classroom without telling anyone.  We found him hanging around the front of the library.”

"His peers really enjoy him because he is always leading such interesting discussions. They love to listen to him. The problem is that it doesn't have to do with what the group is working on."
Huh. 
During the IEP meeting we heard tales of assessment – writing, intelligence scoring, occupational therapy, social pragmatics testing – and stories, some quite entertaining,  some err, concerning, about Finbar.  A total of 9 people sat around the table discussing my son for over two hours until we finally had to call it quits.  I didn’t know whether to thank these people for all of their efforts, or to apologize to them for  holding them hostage for so long.  In the end, Finbar has three new goals on his IEP that basically say that he will behave better with his teacher and his peers.  The well worn rug is still there.


“What Mrs. M REALLY wants for you this year, what the most important thing for her is, is that you work well in groups and with partners. That's what she told me."

“I work well in groups. I always work well in groups.”

Ha!  I thought back to the girl he made cry earlier in the year and to the way he shouts at the kids at his table to be quiet so that they can get table points. 
“Um, apparently not. You have to take responsibility for your mistakes Finbar.  So you need to start being really nice to the other kids in your group or your partners and let them talk about what they want to talk about. Ask them what their opinion is. Take turns. Really listen. That kind of stuff.”

How's he going to remember that laundry list?
“OK.”
Is it realistic to expect 3rd graders to work well in groups? I couldn't even do manage that in MBA school...
 
The next day Finbar returned from school announcing, “Mom I had a really good day. Mrs. M told me so, she said ‘you had a great day Finbar.’” Bless her.
The behaviorists who come to our home have been modeling using great affect when praising Finbar.  I climbed out of my shell and mustered my best cheerleading voice.

 “Woohoo! Great job buddy! That’s what I’ m talking about!  Proud of you bud!” 

 I gave him a high five and went back into my shell.  I  hugged him. He scrunched his face and let out a squeak. “Mom, thank you for affording me in your big tummy for 9 months and for being my mother. I love you.”

4th grade here we come.