Eli, present and future.

So I didn't get to everything before the MAPS meeting!  Just to bring us to a milestone, below are the last questions we'll consider tomorrow.
I started this blog so that anyone who wanted to think about the process before-hand would know what the questions would be.  I hope this was helpful for those of you who like a few days to warm up your thoughts.

I want to emphasize, though, what Craig (our moderator) has conveyed:  Don't worry about not having something to say!  You will.  People tend to enjoy this day and once the conversation gets going, everyone feels compfortable participating.

I can't wait to see everyone tomorrow!

The remaining steps.

Fourth Step:
WHO AM I / STUDENT CHARACTERISTICS: a description of yourself, including the strengths, skills, likes, and values you perceive in Eli.  What words best describe Eli? What skills, gifts, and talents will support Eli’s journey toward his goals?  What other skills and talents will Eli need? What do you like/dislike about Eli’s current situation? What values and beliefs guide Eli’s life and work and guide your role as a person supporting Eli’s development and future?

 

Fifth step:
NEEDS: a description of the things that need to happen to help make the vision for Eli’s future come true. This list will include new experiences, skills, or resources and support that Eli will need.

Belonging...

NPR article this morning: Kids with Autism spectrum disorders are much more likely to be bullied.  Bullying is a classic part of the many social difficulties kids with ASD have.  In this story, home schooling was the remedy the parents chose.  Eventually, the parents found a school for ASD education.

So this raises all sorts of issues related to Eli...
How will we know if he is being bullied? Eli can't and doesn't communicate problems he experiences in a clear way.  Often he doesn't remember much of his day or at least can't access it when asked about it.  (He sometimes seems to be replaying a movie reel of the day from start to finish when he is asked to recall the day...struggling as he views the movie to see each event).

How will we address growing issues of social isolation?
Besides the difficulty of knowing when it is happening or how much it is affecting Eli, how will we deal with what he is experiencing?  Can we address something when we don't understand it fully from his perspective? Is integration always the answer? Is it more important to keep Eli with kids who so clearly love him or find new kids and new community?
Dan was heroic in bringing Eli to the Upper Valley Special Olympics community.  I wasn't sure it would be a good match, but Eli loved it.  That experience made me open up to the possibility that other special communities might have much to offer Eli--everything from Hartford High School to Berkshire Hills Music Academy.

Part of the impetus for holding a MAPS was to address Eli's social isolation--a new phenomenon so profoundly obvious this year where it had not been in previous school years. In this MAPS we can't address every problem he might face, but we can shape Eli's experiences to give him a variety of social groups so that we can start to understand which experiences are helpful and which groups and environments are most nurturing for him.

One month away! New Location see link.

We are less than a month away from meeting together. Please note the new location, Tracy Hall, for Eli's meeting. 

http://eliweintraub.blogspot.com/2012/02/please-join-us-as-we-map-elis-future.html

Monster with the yellow hair...

Sometimes Eli tells stories in the morning while we make breakfast.  His favorite character recently has been the Monster with the Yellow Hair and Black Eyes.  The monster usually does fairly innocuous things like get stuck in the jungle or drive a blue dump truck.  


I like the monster.  


I don't know if this character is a monster because Eli is scared of this character or if he is a monster because nine year old boys like monsters.  I feel like I pretty much know when Eli is scared, though, and he doesn't seem scared when he talks about the monster.  
His fears are more about dandelions and bandaids and tall grasses and not knowing the schedule.  He is NOT afraid of the ocean.  Maybe that's because he's been at the ocean every year since he was 3 months old (as he was in this photo).  


The things Eli does fear will be a barrier to his success and progress, though.  So we need to share them, confront them, and keep up with them as they change.  


On the other hand, . . . fears can be very useful information for planning and preventing disaster.


To continue about Eli--> 

• What should he fear that he doesn't? 
• What do you think his fears are right now? 

And to refocus a bit back to the MAP-->

• What are your worries or concerns about Eli’s future? 
• What hazards and barriers do you see?  
• Where might people, places, or limits on experiences, skills, or resources stand in the way of realizing whatever goals Eli has before him?

Social Eli

This year has been the hardest so far for Eli socially.  And, of course when the social piece falls apart, almost nothing else is quite right. 

Eli did find a great new set of friends when he started bowling with the Upper Valley Hawks, his Special Olympics group.  It only lasted for the fall, though.  And now he misses having a least a weekly gathering where he is fully accepted and celebrated.  He asks often when he can go back.

He continues to develop loving, appropriate and rich relationships with the adults in his life.  But finding a way to open up his social life to more children like him and not like him is certainly a goal.
Here is a great article on the Social Thinking curriculum which forms of the foundation of the curriculum at Camp Coyote.  Eli loves this camp.  He made significant strides last year, recognizing when a conversation was happening and learning both that he could start a conversation as well as some tools for doing so.  Now conversations actually have a back and forth pattern to them.

One dream . . .

Many thanks to Roseanne Kramer for allowing me to share her dream (or one of her dreams) for Eli's future...

I think Eli needs to have a future and career that is people orientated. He is too charming to be isolated and he has a knack of making people feel good. I can see him as a speaker and advocate for a cause dear to his heart, or an architect designing a town or a carpenter making beautiful furniture...but the BEST career for him would be playing the piano at Mary Hitchcock in one of the grand  hallways (maybe the one close to the cancer ward) so that everyone going by could hear his music and feel cheered by it. Without a doubt, Eli would draw smiles from everyone....

e.e. weintraub: Eli's poetry.

Eli speaks...and Eli writes.  Often it makes us pause.  Often we ask him what he means.

Sometimes Hannah interprets.  I have seen many cases where one sibling is able to interpret for another.  Hannah certainly has this gift.  Even when she provides insight to Eli's missives and reflections, her interpretations are metaphysical, though, as if she is channeling an oracle.

Sweet mystical Eli...

Just recently we have begun writing down the things he says, or asking him to write them down. It is not a completely organized effort, but there are sheets of paper and notebooks with scribblings.

Here's what he wrote in one notebook:

Why did the monster bump you when you get so vanished?
Why did his friends knocked over over the monster when I get so worried?
Because if I got so worried every body could go to an island, yes.
The monster is flat.

You'll notice a monster theme.  (More about this in another post). All of these bits were written after Eli said or asked them.

(This morning, all we did was add and multiply numbers, except for one moment when Eli said something about A to Z mysteries.)
Here is another wonderful piece that Eli wrote with his grandmother (Grammie).  This one was typed, which seems to make a difference in his clarity of thought.

There was a big monster named Billy Stein. He walks around the town. His teeth are purple and his nose is green. He has a pink car and he breaks down. When the car breaks down, Billy Stein, the Monster, goes ballistic. He makes a very big sound with the car motor, but no one gets scared.They started to laugh. Billy Stein laughed also and out of his mouth came ... out of his mouth hopped a black witch.

I have above my desk at the office a poem by ee cummuings in which he speaks of "a blue dream of sky" and "leaping greenly spirits of trees" so I am awake to the possibility that Eli speaks in poetry.

I just pray for a world that will be open
to hearing and seeing
the human merely being unimaginable
Eli.