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
Friday, March 30, 2012
Tuesday, March 27, 2012
Monster with the yellow hair...
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?
Thursday, March 22, 2012
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.
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.
Monday, March 19, 2012
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:
(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.
I just pray for a world that will be open
to hearing and seeing
the human merely being unimaginable
Eli.
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?You'll notice a monster theme. (More about this in another post). All of these bits were written after Eli said or asked them.
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.
(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.
Friday, March 16, 2012
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.
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?
Friday, March 9, 2012
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!
...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!
Thursday, March 8, 2012
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!
Wednesday, March 7, 2012
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.
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.
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