Eli & Abstraction: The difference between a rock and the number 2 (with a brief discussion of Wednesday)

Eli’s teachers and his parents have noted that it’s hard to tell whether Eli understands abstraction.  What is abstraction, anyway?  I’m hard-pressed to define it clearly for myself.  More importantly, any definition I might come up with would probably be more confusing to Eli than an example.

On a recent walk up Bowen Hill, I broached the subject.  “Eli, do you know the word ‘abstract’?”  (In circumstances like this, I’ve found it best to start with how to spell a word.  It’s easier to get Eli interested in something when I come at it via one of his strengths.  Also, I’ve found that he quickly loses interest in my long descriptions, so I try to opt for short sentences and lots of questions.)

Spelling is easy for Eli.  He guesses at the correct spelling on his first try.  My next question, “What does it mean?”

“Um, I don’t know.”

“Well, I don’t really know either, but I can tell you something that definitely is abstract.  Can I tell you?”

“Sure!”

“The number 2.”

“What?”

“The number 2.”

“Oh.”

“So, tell me about the number 2.  Can you put it in your pocket?”

“No.”

“Can you pick it up and throw it at that tree?”

“No.”

“What about that rock, there.  Can you pick it up and throw it at that tree?”  (We’ve had several walks that devolved into rock-throwing, so my suspicion is that he’s very familiar with the tangible nature of rocks.)

“Yes.”

“So, that rock is not abstract.  It’s real.  Oops.  Hm, the number two is real too, right?”

“Right!”

“So that rock is the opposite of abstract.  It’s concrete.  Hm.  Well, concrete is confusing maybe.  Let’s use another word, tangible.  That rock is tangible – you can pick it up, feel it, put it in your pocket, throw it, whatever.”

“Uh-huh.”

“Does that make sense?  …the difference between a rock and the number 2?”

“Yes.”

“OK, so what about Wednesday?”

“What about Wednesday?”

“Yeah.  Is Wednesday like a rock, or the number 2?”

“The number 2.”

“OK, but is Wednesday like the number 2, or a rock?”

“The number 2.”

“Can you put Wednesday in your pocket?”

“No.”

“Can you throw Wednesday at that tree?”

“No.”

In that moment, Eli seemed to get what I meant.  And so, I am hopeful and curious about where we will go with this idea the next time we talk about it.

Gem 1

Eli this morning: Mommy, do you know what? Everything is real.

Everything is real.

Addressing Eli's Needs

MAPS is underway. Our goals from this process were focused on getting Eli successfully through fourth grade and shaping a solid transition to the Richmond Middle School for seventh grade.  The top needs we identified to achieve these goals are:

(1) Friendships and mentorships: Find natural peer mentors in his class and nurture existing friendships.  A potential model for mentoring is the "Best Buddies" program which would link Eli with a friend and mentor through a Shriver Foundation program (this would have to be developed in Vermont as the program is in other states but not here yet).  One positive existing source is Special Olympics.
(2) Evaluate and modify the curriculum relating to Eli's needs and strengths and our vision for his future, focusing on inclusion where reasonable and parallel learning where we agree it makes more sense.
(3) Find "ways in": explore modes of learning that exploit Eli's strengths and interests such as song, dance, piano, other instruments, basketball, and other modes, to be discovered. Experiment with conveying curricular concepts through these modes.  Educate the team about what holds the most promise for particular educational goals.
(4) Investigate Technology: Will an iPad or a small notebook PC or other device enable Eli's ability to learn, communicate, and make the curriculum more accessible? Can the iPad act as a virtual service dog, giving Eli instructions and nudges about what to do in a situation?
(5) Psycho-social development: Eli needs age appropriate and developmentally appropriate instruction about relationships as he enters the age of "crushes" and starts to travel in his world more independently.  Concerns include teaching Eli about giving appropriate space to others in the right context and keeping Eli safe from predators and those who might otherwise exploit him.
(6) Construct a plan for independence: understand the life skills he will need to accomplish the appropriate level of self-sufficiency for each stage of his school experience, for extra-curricular programs, and for adult life after that.  Starting with fourth grade and middle school targets, (a) explore ways that peer advocates can help and develop those peers through direct and indirect means, but be careful not to mess too much with the wonderful natural peer advocacy already there! (b) identify goals for independence that can be started at home and encouraged at school.

I have a list of people who signed up at the MAPS day to address some of these.  We need more volunteers.  (A reminder that volunteers only need to be willing to keep track of progress, not take responsibility for accomplishing the goal or addressing the need.)

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.

Big fluffy dreams (step two)

Eli circa 2008 in Quechee with Snowy Day

DREAMS... a vision of things you would like to see happening as you expand your vision of Eli in the near and long term future. 


One of our dreams for Eli--to celebrate his milestones, including his birthday, with his peers--was realized last Sunday when Eli had his bowling birthday party.  First real party ever, with friends and birthday presents.  (I think he liked it because he told me that we're doing it again, presents and all, this Sunday).  We have thought and planned this for years.  But I haven't felt emotionally safe enough to extend the invitation until this year.  I just couldn't take the prospect of having the invitation declined.  So they never went out.


Until this year.  And, you know what? The most beautiful, amazing boys--Eli's classmates--came and had a good time and brought him the most thoughtful presents ever.  


These dreams are as much about us as Eli.  When we dream about his future, we dream about ours.  So . . .


Dream big!  


Again, for the more concrete folks: Please do not curtail your dreams for Eli with “realistic goals”—that happens in steps 4 and 5 of the process.  


Ask yourself, what would be the greatest future you could imagine.  Rock star? Paleontologist (Eli's latest career goal)? Astronaut (another recent one)? 


When I saw his hands moments after he was born, I said, "brain surgeon." In a way, I am right already.  He's healed my brain many times over.  

Will Eli fall in love? Run for mayor? Play in a band? Will he have a garden? A farm?  

Mighty Morphin' Power Eli! (Dan Weintraub, daddy-post)

I sense a change in Eli these days
...the arrival of a powerful, willful, self-assured Eli.



Tonight at the grocery store I tried the old ploy of coaxing Eli into accepting a less enticing dinner than the promised Annie's.

I was tired.

Eli would have nothing of it. No tears. No frowny faces.

I said, 'how 'bout a sandwich.'
Eli said, 'No, I want Annie's.'
I said, 'Maybe we could have Annie's on Friday.'
Eli responds: 'Dad, I want Annie's...pasta dad...pasta.'

I laugh out loud. Welcome to the world, mighty morphin' power Eli!

New Hampshire IOD using Ipad Apps

Great resource--New Hampshire Institute on Disability (IOD).  It's a bit far away, but I am on their mailing list and get announcements about events like this one:
http://www.iod.unh.edu/Services/professional-development.aspx
 If there are any must do classes that might help Eli and the school in general, I'd be happy to get more information and do whatever I can to either get there myself and then share the information or assist someone from MCS in attending.

I got to know IOD through Dan Habib's film, Including Samuel which completely changed my perspective on parenting Eli.  It's a wonderful documentary about Inclusion, the challenges and rewards for everyone involved.  We shared it with friends and teachers.  I wonder whether the school has a copy.  If not, let me know and I will order an institutional copy for MCS!

Eli's History is . . . history

One thing I love about Eli is that he doesn't hold his past or carry it with him the way the rest of us seem to.  He takes in every person he encounters with the same friendliness and openness, no matter who they are or what they look like.  It does not matter what kind of day he is having, either.  Though he might just have been crying or frustrated, he leaves that experience and turns toward the new experience of this person before him with a smile. 

This quality allows Eli to remain emotionally open to experiences (though he usually does need a little introduction) without the baggage of associating it with other things.  There are exceptions to this, but not many.

Another effect of Eli's lack of history or baggage is that he doesn't carry shame as intensely as we do (or sheds it more easily).  He does respond to conscious efforts to shame him (such as the rare event when he might hit his sister).  He does not seem to shame himself, though.  He will sing, play, dance, laugh, and tell stories without embarrassment.  This allows him the gift of facing the world without the same social inhibitions we have.

On the other hand, Eli's lack of history means we never have "do you remember . . ." conversations.  There is no context for new encounters.  There is no extrapolating on old feelings or old experiences to inform new ones.  I can recreate previous events for him as a preparation tool for something coming up.  But I am never sure what he remembers on his own and he certainly never initiates this. 

I have been pondering history because it is part of this process.  But at the same time, Eli's history does not at all have to be a limitation.  We are the ones who carry his past and his limitations around with us. We don't have to. What Eli could't do before or how he reacted doesn't really inform what he does today. It's all new to him. Dude, it's history.

Here's a link to another MAP resources site in Canada (which is where this process originated).  It is more about making inclusion and mainstreaming happen, which is less our issue than planning, but it does a good job of thinking creatively about the process.

I particularly like The Ethics of Inclusion, which states boldly the Dellusions of inclusion.  http://www.inclusion.com/inclusion.html#ethics We are not in this to make everyone happy or for everyone to love everyone.  We are in this to say: Eli is part of the community and the community must work.  Therefore, we have to openly talk about what will make it work for both the community and for Eli.  It's the talking and openness that is key.

But in order to do that, we have to be aware of our own fears and biases and assumptions and be ready, if not to challenge them, then at least to state what they are and understand how they color our views and influence our behaviors.  And to the extent those biases create problems, we have to own the problems they create.

Poke around on the site...there are tons of great tools and reflections.

Creating Eli's Story, so far . . .

What is your story with Eli?

Some questions that will help frame your "Eli" story are:

From your perspective first:

• Where did it start? When did it start?
• What happened at the beginning of your story that is memorable, emotional, challenging, curious?
• How would you describe your story? Is it full and lengthy? Episodic? A mystery? Poetic? Cryptic? Sad?
• What are the most important or climactic moments? Turning points?
• Are there gaps in your story? What are they? Who do you think has that part of the story?

Eli at his piano recital in November.
Piano! Two-hands! Who knew?

Now, what is your story from Eli's perspective?

• How does he know you? How would he describe you (or the organization or group you represent)? 
• How does he interact with you now? What doesn't he do? 
• How has your relationship changed since your story began?

If this question inspires you, go with it.  Let it inform your dreams, fears, plans, questions about Eli's future and your own future with him.

Five Steps forward...the MAP outline

With yesterday's poetic (and somewhat lengthy) preface, I have put the MAP Process outline below.  Again, I will take these apart over the next few weeks and give you space and time to think and share.  But by way of introduction, here's the overall framework.

Update* : When I copied this list from the materials I had, I did not mean to copy the part about whose input went with each step.  I hope everyone will contribute to every step! 

----------

Five steps of the MAPS process. 

The facilitator gathers ideas from the participants on the following areas as input towards adopting a life vision for the student which may include goals for:

• education, 
• employment, 
• independent living and 
• community participation

Areas 

1. HISTORY: a short description of the background and individual circumstances that led you here today.  Include significant events and identifying qualities.

2. DREAMS: a vision of things you would like to see happening as you expand your vision of Eli in the near and long term future. Dream big!  Do not curtail your dreams for Eli with “realistic goals”—that happens in steps 4 and 5 of the process.  Ask yourself, what would be the greatest future you could imagine.

3. FEARS: a description of 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?

4. 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?

5. 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.

Once these inputs are gathered, the team will work together with the family and student to make short- and long-term plans for the student.  

The MAPS process will continue to be a guiding instrument for academic planning, extra-curricular activities, financial planning and family communication with stakeholders in Eli’s community.

I have found myself thinking this weekend about maps and mapping.  Every time I write an email to someone to invite them here, I tell them we will be "mapping Eli's future."  What I mean I guess is that we are making plans for his future.  We are setting down the steps we will take to get from Here to There.  


In actuality, though, I know this is a process that requires a bit of assumption and a lot of guessing.  "We think we might be somewhere around here.  And, we really hope that some day we will find ourselves here.  So, assuming our measurements and calculations are correct, this is one of the five hundred ways we could traverse the territory between Here and There...hope there aren't too many alligators!"


This kind of uncertainty requires an injection of courage and hope and must allow at least a little room for doubt and humor and humility.  In short we need assurance that to engage in this process isn't so foolish that it is pointless.  We need to agree that we will try the best we can, we will adjust along the way and we will forgive ourselves the mistakes that will inevitably plague this effort.


Miroslav Holub says in his poem, "Wings" that we get our wings from our maps and tell ourselves that what matters are our grand projects: ". . . a map of the universe for microbes" or "a map of a microbe for the universe."  Ultimately, though, it is the small projects and the searching that makes life worthwhile:

the ability
to sort peas,
to cup water in our hands,
to seek
the right screw
under the sofa
for hours

There are a couple of other Map thoughts I have found in poetry that help to settle my nerves a bit about this process:

The Map of the World Confused with Its Territory by Susan Stewart : The Poetry Foundation

The Map by Gary Soto : The Poetry Foundation

While there are big things we may hope to accomplish, I hope we can keep our eyes on the human-scale things, the things that make an ordinary life worth living.

You are here.  Hooray!  Some of you may remember Eli's "Oh the Places You'll Go" phase...He carried that book everywhere until he had it memorized.  Well it's back--in part because his Uncle Art sent us the Burning Man version! 

And, speaking of places Eli will go... Here is a link to a basic description and workbook tool for participants in a MAP process. If you are eager to learn more, you can get started there.  But if you are feeling patient (or just short of reading time), I plan to walk through the process here, little by little.

We need input on each part of the process. You can share input before the meeting here on this blog and at the meeting. Do what works and what feels comfortable.

Post a reader comment to share thoughts or feedback. You can add comments to topical discussions or at random as they come. If you have a comment that doesn't seem to fit a category (or a question about anything), feel free to post at any time.

We'll keep track and answer or share as it seems appropriate. Thanks!

Please join us as we MAP* Eli's Future! - Location change!

April 25 is the date for Eli's MAP* gathering at Tracy Hall in Norwich.  We will meet at 10:00 a.m. in the downstairs meeting room (where the Selectboard meets).

You, as an important part of Eli's life and future, are invited to be part of this process. We hope you will attend.

NOW, we need you to do three things!

1. Post here or reply to the eVite that is coming your way that you will be attending (or won't).
2. Bookmark this URL (eliweintraub.blogspot.com) in your browser so you can find it again.  It won't be searchable in Google!
3. Join this site or become a member (or better yet, an author!) so you can join the conversation and comment or post.

Thanks!  We are looking forward to hearing from you and to seeing you in April!

The MAP* (McGill Action Plan) process brings together all the people in the life of a person with disabilities including caretakers, family, friends and community to express ideas and hopes for his future and how he will grow in his community.