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Thoughts on A Day as a Senior at High School

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Dear Yuka,

I hope is gratified to know he is noticed and respected for his

talents. He should be. And knowing this may allow him to spread his focus more

onto his peers. I've seen Di (sometimes grudginly, sometimes wistfully,) come

to

an acceptance that this is 'how it is' for her. And yet, when given the

opportunity, I've heard (and overheard) she can party with the best of them.

(well, she is her mother's daughter-some of that stuff had to cross over) Yet,

her need to achieve is paramount in school, and with homework; and like ,

I believe, it takes and she gives all her focus to that.

My point is that I don't know that your other boys' school experiences would

have worked well for . would not have fared well in those other

situations. Too much banter, thinking quickly and off the top of the head,

too much non-literal conversation to process, not enough structure. Our kids

seem by nature to be goal-oriented in school. So maybe when push comes to

shove, that's what they're most comfortable with, because that's where they can

perform the best.

>> had a very academic focusing DHH teacher for 3-5th grade, and his

mainstream teacher in 6th was much the same. Now I can see that my other sons

had teachers that fostered group work/time - exchange of a variety of ideas

(which 's teachers would have seen as unproductive) and how that would have

helped. <<< (- I learned to insert these little dweebies from you ;-)

<<<<<< those thingies. ;-)>>>>

Love,

in Ma. ( 21 yrs)

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Yuka-

What wonderful insight! I'm not surprised that Elliot is attentive to these

comments from classmates and shares them with you. Wonderful brother! It's

illuminating to hear how the social interactions are impacted by that

determination and focus that serves our kids so well in other areas. May I

share this with Aubrie's social worker who is trying to understand her

socially?

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Yuka Persico

Sent: Friday, October 13, 2006 9:49 AM

To: CHARGE

Subject: Thoughts on A Day as a Senior at High School

Up until now we had joked in our family that 's lack of social

opportunity was framed by his tendency to perseverate, to have slightly

off-putting choices of conversation and habits, and by his slightly

compulsive habits in terms of his school work and the support of his school

work. His sheer focus and determination while navigating the halls of school

do not lend themselves to social banter. Speech Therapists have worked on

pragmatics in language and articulation, wondering why that hasn't improved

the social scene. This school year 's younger brother is at the same

school with and for the first time I have a chance to see

through eyes outside of teachers and translators inside the classroom. I

started to become aware that the behaviors are a demonstration of something

deeper. I started to use the words " discernment " and " judgment " .

didn't seem to be able to discern or judge who would be a potential friend.

Then I looked at other behaviors he has - how infrequently he takes the

opportunity to re-evaluate something, how he just proceeds with persistence

and patience any plan. Whether it is in a table game with friends, selecting

new aircrafts on a video game or alternating breaks and homework time - he

sets a pattern and sticks to it without judgment, without attachment without

re-evaluation. Things we had previously witnessed under the umbrella of

" compulsion " . Now I am starting to have a glimpse of why he hasn't developed

those skills - or rather what he has been focusing his energy on in such a

primary way as to exclude time from developing these skills.

In just the seven weeks since this school term started I have learned so

much about (our son with CHARGE who is senior at high school) daily

through Elliot's ('s younger brother who is now a freshman/ninth grader

at the same high school) eyes and ears. Half what Elliot sees and half what

he hears from 's classmates that are in some of Elliot's classes. Some

of it breaks my heart. One girl today asked Elliot if he was 's brother

(this story has been happening two or three times a week with different kids

approaching Elliot). She told Elliot she is in 's AP Govt class. She

also said she has been in many of his classes since seventh grade. She told

Elliot that is one of the nicest guys and is known by all the 'smart'

kids because he is such a nice and smart kid. When Elliot asked if he

knew , he wasn't sure. Elliot described her, and wasn't sure.

Elliot told the whole story, which made happy and also made him laugh,

and then said " maybe she sits in front of me. " This and other stories

like it make me realize how hard works to attend in class - to the

teacher, to the sign language translator, to keeping with physically

navigating, his physical school supplies and everything else. I really don't

know how he does it. His brace makes everything quite difficult. So after he

kneels and leans enough to get stuff out of his rolling backpack (with which

he regularly runs over other students) he had to position himself in the

chair in such a way that he can still see his paper enough to take notes yet

not be strangled too much by the brace, and also keep his head in a spot

where the FM system is giving him the least amount of static, keep his eye

on the interpreter, his eyes and ears on the teacher, his eyes on other

visual supports and his note paper. It was all consuming enough before the

brace. It's no wonder he hasn't had the time to notice that several students

have been in several classes with him each year for six years! So I chose my

words carefully - and we talked about how different 's school

experience is. How much I admire his determination and his success. How I

always knew it was a given that he works hard, and yet I felt as if for the

first time I really could feel how consuming the effort is. And I think it

opened 's eyes to the possibilities he hasn't seen. He was pleased at

least of evidence of being known and liked in a way that resonated as true.

yuka

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Up until now we had joked in our family that 's lack of social opportunity

was framed by his tendency to perseverate, to have slightly off-putting choices

of conversation and habits, and by his slightly compulsive habits in terms of

his school work and the support of his school work. His sheer focus and

determination while navigating the halls of school do not lend themselves to

social banter. Speech Therapists have worked on pragmatics in language and

articulation, wondering why that hasn't improved the social scene. This school

year 's younger brother is at the same school with and for the first

time I have a chance to see through eyes outside of teachers and

translators inside the classroom. I started to become aware that the behaviors

are a demonstration of something deeper. I started to use the words

" discernment " and " judgment " . didn't seem to be able to discern or judge

who would be a potential friend. Then I looked at other behaviors he has - how

infrequently he takes the opportunity to re-evaluate something, how he just

proceeds with persistence and patience any plan. Whether it is in a table game

with friends, selecting new aircrafts on a video game or alternating breaks and

homework time - he sets a pattern and sticks to it without judgment, without

attachment without re-evaluation. Things we had previously witnessed under the

umbrella of " compulsion " . Now I am starting to have a glimpse of why he

hasn't developed those skills - or rather what he has been focusing his energy

on in such a primary way as to exclude time from developing these skills.

In just the seven weeks since this school term started I have learned so much

about (our son with CHARGE who is senior at high school) daily through

Elliot's ('s younger brother who is now a freshman/ninth grader at the same

high school) eyes and ears. Half what Elliot sees and half what he hears from

's classmates that are in some of Elliot's classes. Some of it breaks my

heart. One girl today asked Elliot if he was 's brother (this story has

been happening two or three times a week with different kids approaching

Elliot). She told Elliot she is in 's AP Govt class. She also said she

has been in many of his classes since seventh grade. She told Elliot that

is one of the nicest guys and is known by all the 'smart' kids because he is

such a nice and smart kid. When Elliot asked if he knew , he

wasn't sure. Elliot described her, and wasn't sure. Elliot told the

whole story, which made happy and also made him laugh, and then said

" maybe she sits in front of me. " This and other stories like it make me realize

how hard works to attend in class - to the teacher, to the sign language

translator, to keeping with physically navigating, his physical school supplies

and everything else. I really don't know how he does it. His brace makes

everything quite difficult. So after he kneels and leans enough to get stuff

out of his rolling backpack (with which he regularly runs over other students)

he had to position himself in the chair in such a way that he can still see his

paper enough to take notes yet not be strangled too much by the brace, and also

keep his head in a spot where the FM system is giving him the least amount of

static, keep his eye on the interpreter, his eyes and ears on the teacher, his

eyes on other visual supports and his note paper. It was all consuming enough

before the brace. It's no wonder he hasn't had the time to notice that several

students have been in several classes with him each year for six years! So I

chose my words carefully - and we talked about how different 's school

experience is. How much I admire his determination and his success. How I

always knew it was a given that he works hard, and yet I felt as if for the

first time I really could feel how consuming the effort is. And I think it

opened 's eyes to the possibilities he hasn't seen. He was pleased at least

of evidence of being known and liked in a way that resonated as true.

yuka

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absolutely! I hope that this story will inspire proactive solutions and

interventions that can be incorporated at an earlier age. I wish I knew what

those might be :o)

had a very academic focusing DHH teacher for 3-5th grade, and his

mainstream teacher in 6th was much the same. Now I can see that my other sons

had teachers that fostered group work/time - exchange of a variety of ideas

(which 's teachers would have seen as unproductive) and how that would have

helped. Also, PE, an arena that is mostly social for my other two boys is

supremely effortful for . So though he has the praise of his instructors,

he never had social time there either.....

**sigh*** it is as it is, full of blessings all the same. Recognizing the loss

though is an adjustment....

yuka

Thoughts on A Day as a Senior at High School

Up until now we had joked in our family that 's lack of social

opportunity was framed by his tendency to perseverate, to have slightly

off-putting choices of conversation and habits, and by his slightly

compulsive habits in terms of his school work and the support of his school

work. His sheer focus and determination while navigating the halls of school

do not lend themselves to social banter. Speech Therapists have worked on

pragmatics in language and articulation, wondering why that hasn't improved

the social scene. This school year 's younger brother is at the same

school with and for the first time I have a chance to see

through eyes outside of teachers and translators inside the classroom. I

started to become aware that the behaviors are a demonstration of something

deeper. I started to use the words " discernment " and " judgment " .

didn't seem to be able to discern or judge who would be a potential friend.

Then I looked at other behaviors he has - how infrequently he takes the

opportunity to re-evaluate something, how he just proceeds with persistence

and patience any plan. Whether it is in a table game with friends, selecting

new aircrafts on a video game or alternating breaks and homework time - he

sets a pattern and sticks to it without judgment, without attachment without

re-evaluation. Things we had previously witnessed under the umbrella of

" compulsion " . Now I am starting to have a glimpse of why he hasn't developed

those skills - or rather what he has been focusing his energy on in such a

primary way as to exclude time from developing these skills.

In just the seven weeks since this school term started I have learned so

much about (our son with CHARGE who is senior at high school) daily

through Elliot's ('s younger brother who is now a freshman/ninth grader

at the same high school) eyes and ears. Half what Elliot sees and half what

he hears from 's classmates that are in some of Elliot's classes. Some

of it breaks my heart. One girl today asked Elliot if he was 's brother

(this story has been happening two or three times a week with different kids

approaching Elliot). She told Elliot she is in 's AP Govt class. She

also said she has been in many of his classes since seventh grade. She told

Elliot that is one of the nicest guys and is known by all the 'smart'

kids because he is such a nice and smart kid. When Elliot asked if he

knew , he wasn't sure. Elliot described her, and wasn't sure.

Elliot told the whole story, which made happy and also made him laugh,

and then said " maybe she sits in front of me. " This and other stories

like it make me realize how hard works to attend in class - to the

teacher, to the sign language translator, to keeping with physically

navigating, his physical school supplies and everything else. I really don't

know how he does it. His brace makes everything quite difficult. So after he

kneels and leans enough to get stuff out of his rolling backpack (with which

he regularly runs over other students) he had to position himself in the

chair in such a way that he can still see his paper enough to take notes yet

not be strangled too much by the brace, and also keep his head in a spot

where the FM system is giving him the least amount of static, keep his eye

on the interpreter, his eyes and ears on the teacher, his eyes on other

visual supports and his note paper. It was all consuming enough before the

brace. It's no wonder he hasn't had the time to notice that several students

have been in several classes with him each year for six years! So I chose my

words carefully - and we talked about how different 's school

experience is. How much I admire his determination and his success. How I

always knew it was a given that he works hard, and yet I felt as if for the

first time I really could feel how consuming the effort is. And I think it

opened 's eyes to the possibilities he hasn't seen. He was pleased at

least of evidence of being known and liked in a way that resonated as true.

yuka

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Yuka,

How great to get another insight into 's experience. I find it hard

already not getting enough " info " from Kennedy and I think it's similar; she

works SO hard to concentrate (she is doing AMAZING with the full grade three

regular curriculum - straight A+'s on all her tests so far) that she doesn't

pick up on other things in her day and can't relate those back to me. I'm

so proud for what she's accomplishing yet simultaneously sad at the

realization of how hard she has to work and how much " other stuff " she

misses.

http://www.chargesyndrome.info

>

>

>

> Up until now we had joked in our family that 's lack of social

> opportunity was framed by his tendency to perseverate, to have slightly

> off-putting choices of conversation and habits, and by his slightly

> compulsive habits in terms of his school work and the support of his school

> work. His sheer focus and determination while navigating the halls of school

> do not lend themselves to social banter. Speech Therapists have worked on

> pragmatics in language and articulation, wondering why that hasn't improved

> the social scene. This school year 's younger brother is at the same

> school with and for the first time I have a chance to see

> through eyes outside of teachers and translators inside the classroom. I

> started to become aware that the behaviors are a demonstration of something

> deeper. I started to use the words " discernment " and " judgment " .

> didn't seem to be able to discern or judge who would be a potential friend.

> Then I looked at other behaviors he has - how infrequently he takes the

> opportunity to re-evaluate something, how he just proceeds with persistence

> and patience any plan. Whether it is in a table game with friends, selecting

> new aircrafts on a video game or alternating breaks and homework time - he

> sets a pattern and sticks to it without judgment, without attachment without

> re-evaluation. Things we had previously witnessed under the umbrella of

> " compulsion " . Now I am starting to have a glimpse of why he hasn't developed

> those skills - or rather what he has been focusing his energy on in such a

> primary way as to exclude time from developing these skills.

>

> In just the seven weeks since this school term started I have learned so

> much about (our son with CHARGE who is senior at high school) daily

> through Elliot's ('s younger brother who is now a freshman/ninth grader

> at the same high school) eyes and ears. Half what Elliot sees and half what

> he hears from 's classmates that are in some of Elliot's classes. Some

> of it breaks my heart. One girl today asked Elliot if he was 's brother

> (this story has been happening two or three times a week with different kids

> approaching Elliot). She told Elliot she is in 's AP Govt class. She

> also said she has been in many of his classes since seventh grade. She told

> Elliot that is one of the nicest guys and is known by all the 'smart'

> kids because he is such a nice and smart kid. When Elliot asked if he

> knew , he wasn't sure. Elliot described her, and wasn't sure.

> Elliot told the whole story, which made happy and also made him laugh,

> and then said " maybe she sits in front of me. " This and other stories

> like it make me realize how hard works to attend in class - to the

> teacher, to the sign language translator, to keeping with physically

> navigating, his physical school supplies and everything else. I really don't

> know how he does it. His brace makes everything quite difficult. So after he

> kneels and leans enough to get stuff out of his rolling backpack (with which

> he regularly runs over other students) he had to position himself in the

> chair in such a way that he can still see his paper enough to take notes yet

> not be strangled too much by the brace, and also keep his head in a spot

> where the FM system is giving him the least amount of static, keep his eye

> on the interpreter, his eyes and ears on the teacher, his eyes on other

> visual supports and his note paper. It was all consuming enough before the

> brace. It's no wonder he hasn't had the time to notice that several students

> have been in several classes with him each year for six years! So I chose my

> words carefully - and we talked about how different 's school

> experience is. How much I admire his determination and his success. How I

> always knew it was a given that he works hard, and yet I felt as if for the

> first time I really could feel how consuming the effort is. And I think it

> opened 's eyes to the possibilities he hasn't seen. He was pleased at

> least of evidence of being known and liked in a way that resonated as true.

>

> yuka

>

>

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I may also share this with Kennedy's team to highlight the social challenges

these children face and that those goals are also important.

thanks Yuka,

>

> absolutely! I hope that this story will inspire proactive solutions and

> interventions that can be incorporated at an earlier age. I wish I knew what

> those might be :o)

>

> had a very academic focusing DHH teacher for 3-5th grade, and his

> mainstream teacher in 6th was much the same. Now I can see that my other

> sons had teachers that fostered group work/time - exchange of a variety of

> ideas (which 's teachers would have seen as unproductive) and how that

> would have helped. Also, PE, an arena that is mostly social for my other two

> boys is supremely effortful for . So though he has the praise of his

> instructors, he never had social time there either.....

>

> **sigh*** it is as it is, full of blessings all the same. Recognizing the

> loss though is an adjustment....

>

> yuka

>

> Thoughts on A Day as a Senior at High School

>

> Up until now we had joked in our family that 's lack of social

> opportunity was framed by his tendency to perseverate, to have slightly

> off-putting choices of conversation and habits, and by his slightly

> compulsive habits in terms of his school work and the support of his

> school

> work. His sheer focus and determination while navigating the halls of

> school

> do not lend themselves to social banter. Speech Therapists have worked on

> pragmatics in language and articulation, wondering why that hasn't

> improved

> the social scene. This school year 's younger brother is at the same

> school with and for the first time I have a chance to see

> through eyes outside of teachers and translators inside the classroom. I

> started to become aware that the behaviors are a demonstration of

> something

> deeper. I started to use the words " discernment " and " judgment " .

> didn't seem to be able to discern or judge who would be a potential

> friend.

> Then I looked at other behaviors he has - how infrequently he takes the

> opportunity to re-evaluate something, how he just proceeds with

> persistence

> and patience any plan. Whether it is in a table game with friends,

> selecting

> new aircrafts on a video game or alternating breaks and homework time - he

> sets a pattern and sticks to it without judgment, without attachment

> without

> re-evaluation. Things we had previously witnessed under the umbrella of

> " compulsion " . Now I am starting to have a glimpse of why he hasn't

> developed

> those skills - or rather what he has been focusing his energy on in such a

> primary way as to exclude time from developing these skills.

>

> In just the seven weeks since this school term started I have learned so

> much about (our son with CHARGE who is senior at high school) daily

> through Elliot's ('s younger brother who is now a freshman/ninth

> grader

> at the same high school) eyes and ears. Half what Elliot sees and half

> what

> he hears from 's classmates that are in some of Elliot's classes.

> Some

> of it breaks my heart. One girl today asked Elliot if he was 's

> brother

> (this story has been happening two or three times a week with different

> kids

> approaching Elliot). She told Elliot she is in 's AP Govt class. She

> also said she has been in many of his classes since seventh grade. She

> told

> Elliot that is one of the nicest guys and is known by all the

> 'smart'

> kids because he is such a nice and smart kid. When Elliot asked if

> he

> knew , he wasn't sure. Elliot described her, and wasn't sure.

> Elliot told the whole story, which made happy and also made him

> laugh,

> and then said " maybe she sits in front of me. " This and other

> stories

> like it make me realize how hard works to attend in class - to the

> teacher, to the sign language translator, to keeping with physically

> navigating, his physical school supplies and everything else. I really

> don't

> know how he does it. His brace makes everything quite difficult. So after

> he

> kneels and leans enough to get stuff out of his rolling backpack (with

> which

> he regularly runs over other students) he had to position himself in the

> chair in such a way that he can still see his paper enough to take notes

> yet

> not be strangled too much by the brace, and also keep his head in a spot

> where the FM system is giving him the least amount of static, keep his eye

> on the interpreter, his eyes and ears on the teacher, his eyes on other

> visual supports and his note paper. It was all consuming enough before the

> brace. It's no wonder he hasn't had the time to notice that several

> students

> have been in several classes with him each year for six years! So I chose

> my

> words carefully - and we talked about how different 's school

> experience is. How much I admire his determination and his success. How I

> always knew it was a given that he works hard, and yet I felt as if for

> the

> first time I really could feel how consuming the effort is. And I think it

> opened 's eyes to the possibilities he hasn't seen. He was pleased at

> least of evidence of being known and liked in a way that resonated as

> true.

>

> yuka

>

>

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Yuka,

As usual you have hit the nail on the head‹of course, how wonderful that

Elliot has access to the same ³hammer² that you use.

I think that what you have said is exactly what many school people miss-and

and Michele already said: how much these kids and young adults have to

do to get through the day. The focus-auditory AND visual AND motor AND food

as energy-is just overwhelming. We think about and hopefully get it from

watching our kids, but the folks that pass them in the hallways, have them

for only short sessions during the week/day, or only notice them from afar

don¹t have the opportunity (and dare I say, privilege) of seeing all that

they do to maintain. The fact the these kids get up everyday and GO to

school, is amazing!!

So, thank you for articulating this; thanks to Elliot for being so cool; and

thanks to who shares his Mother¹s insight with us all.

pam

>

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

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Thank you for sharing this.

Lori Myers

Thoughts on A Day as a Senior at High School

Up until now we had joked in our family that 's lack of social

opportunity was framed by his tendency to perseverate, to have slightly

off-putting choices of conversation and habits, and by his slightly compulsive

habits in terms of his school work and the support of his school work. His sheer

focus and determination while navigating the halls of school do not lend

themselves to social banter. Speech Therapists have worked on pragmatics in

language and articulation, wondering why that hasn't improved the social scene.

This school year 's younger brother is at the same school with and

for the first time I have a chance to see through eyes outside of teachers

and translators inside the classroom. I started to become aware that the

behaviors are a demonstration of something deeper. I started to use the words

" discernment " and " judgment " . didn't seem to be able to discern or judge

who would be a potential friend. Then I looked at other behaviors he has - how

infrequently he takes the opportunity to re-evaluate something, how he just

proceeds with persistence and patience any plan. Whether it is in a table game

with friends, selecting new aircrafts on a video game or alternating breaks and

homework time - he sets a pattern and sticks to it without judgment, without

attachment without re-evaluation. Things we had previously witnessed under the

umbrella of " compulsion " . Now I am starting to have a glimpse of why he hasn't

developed those skills - or rather what he has been focusing his energy on in

such a primary way as to exclude time from developing these skills.

In just the seven weeks since this school term started I have learned so much

about (our son with CHARGE who is senior at high school) daily through

Elliot's ('s younger brother who is now a freshman/ninth grader at the same

high school) eyes and ears. Half what Elliot sees and half what he hears from

's classmates that are in some of Elliot's classes. Some of it breaks my

heart. One girl today asked Elliot if he was 's brother (this story has

been happening two or three times a week with different kids approaching

Elliot). She told Elliot she is in 's AP Govt class. She also said she has

been in many of his classes since seventh grade. She told Elliot that is

one of the nicest guys and is known by all the 'smart' kids because he is such a

nice and smart kid. When Elliot asked if he knew , he wasn't sure.

Elliot described her, and wasn't sure. Elliot told the whole story, which

made happy and also made him laugh, and then said " maybe she sits in

front of me. " This and other stories like it make me realize how hard

works to attend in class - to the teacher, to the sign language translator, to

keeping with physically navigating, his physical school supplies and everything

else. I really don't know how he does it. His brace makes everything quite

difficult. So after he kneels and leans enough to get stuff out of his rolling

backpack (with which he regularly runs over other students) he had to position

himself in the chair in such a way that he can still see his paper enough to

take notes yet not be strangled too much by the brace, and also keep his head in

a spot where the FM system is giving him the least amount of static, keep his

eye on the interpreter, his eyes and ears on the teacher, his eyes on other

visual supports and his note paper. It was all consuming enough before the

brace. It's no wonder he hasn't had the time to notice that several students

have been in several classes with him each year for six years! So I chose my

words carefully - and we talked about how different 's school experience

is. How much I admire his determination and his success. How I always knew it

was a given that he works hard, and yet I felt as if for the first time I really

could feel how consuming the effort is. And I think it opened 's eyes to

the possibilities he hasn't seen. He was pleased at least of evidence of being

known and liked in a way that resonated as true.

yuka

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Yuka-

Same for Aubrie with PE. It's very challenging for her. When they do

contact sports, she is the coach, line judge, score keeper, anything to keep

her from the line of fire. Perhaps we're being too careful, but I don't

want a head or hip injury and the other kids are getting bigger and stronger

all the time!

There are just too many goals for one day for one kid! How can you get all

the academics in and still have time to focus on social concerns?? My mind

is muddled just thinking about it.

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Yuka Persico

Sent: Friday, October 13, 2006 10:20 AM

To: CHARGE

Subject: Re: Thoughts on A Day as a Senior at High School

absolutely! I hope that this story will inspire proactive solutions and

interventions that can be incorporated at an earlier age. I wish I knew what

those might be :o)

had a very academic focusing DHH teacher for 3-5th grade, and his

mainstream teacher in 6th was much the same. Now I can see that my other

sons had teachers that fostered group work/time - exchange of a variety of

ideas (which 's teachers would have seen as unproductive) and how that

would have helped. Also, PE, an arena that is mostly social for my other two

boys is supremely effortful for . So though he has the praise of his

instructors, he never had social time there either.....

**sigh*** it is as it is, full of blessings all the same. Recognizing the

loss though is an adjustment....

yuka

Thoughts on A Day as a Senior at High School

Up until now we had joked in our family that 's lack of social

opportunity was framed by his tendency to perseverate, to have slightly

off-putting choices of conversation and habits, and by his slightly

compulsive habits in terms of his school work and the support of his school

work. His sheer focus and determination while navigating the halls of school

do not lend themselves to social banter. Speech Therapists have worked on

pragmatics in language and articulation, wondering why that hasn't improved

the social scene. This school year 's younger brother is at the same

school with and for the first time I have a chance to see

through eyes outside of teachers and translators inside the classroom. I

started to become aware that the behaviors are a demonstration of something

deeper. I started to use the words " discernment " and " judgment " .

didn't seem to be able to discern or judge who would be a potential friend.

Then I looked at other behaviors he has - how infrequently he takes the

opportunity to re-evaluate something, how he just proceeds with persistence

and patience any plan. Whether it is in a table game with friends, selecting

new aircrafts on a video game or alternating breaks and homework time - he

sets a pattern and sticks to it without judgment, without attachment without

re-evaluation. Things we had previously witnessed under the umbrella of

" compulsion " . Now I am starting to have a glimpse of why he hasn't developed

those skills - or rather what he has been focusing his energy on in such a

primary way as to exclude time from developing these skills.

In just the seven weeks since this school term started I have learned so

much about (our son with CHARGE who is senior at high school) daily

through Elliot's ('s younger brother who is now a freshman/ninth grader

at the same high school) eyes and ears. Half what Elliot sees and half what

he hears from 's classmates that are in some of Elliot's classes. Some

of it breaks my heart. One girl today asked Elliot if he was 's brother

(this story has been happening two or three times a week with different kids

approaching Elliot). She told Elliot she is in 's AP Govt class. She

also said she has been in many of his classes since seventh grade. She told

Elliot that is one of the nicest guys and is known by all the 'smart'

kids because he is such a nice and smart kid. When Elliot asked if he

knew , he wasn't sure. Elliot described her, and wasn't sure.

Elliot told the whole story, which made happy and also made him laugh,

and then said " maybe she sits in front of me. " This and other stories

like it make me realize how hard works to attend in class - to the

teacher, to the sign language translator, to keeping with physically

navigating, his physical school supplies and everything else. I really don't

know how he does it. His brace makes everything quite difficult. So after he

kneels and leans enough to get stuff out of his rolling backpack (with which

he regularly runs over other students) he had to position himself in the

chair in such a way that he can still see his paper enough to take notes yet

not be strangled too much by the brace, and also keep his head in a spot

where the FM system is giving him the least amount of static, keep his eye

on the interpreter, his eyes and ears on the teacher, his eyes on other

visual supports and his note paper. It was all consuming enough before the

brace. It's no wonder he hasn't had the time to notice that several students

have been in several classes with him each year for six years! So I chose my

words carefully - and we talked about how different 's school

experience is. How much I admire his determination and his success. How I

always knew it was a given that he works hard, and yet I felt as if for the

first time I really could feel how consuming the effort is. And I think it

opened 's eyes to the possibilities he hasn't seen. He was pleased at

least of evidence of being known and liked in a way that resonated as true.

yuka

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Michele-

Your reply has brought back two bittersweet memories. When was in AYSO at

nine years of age, we worried to death about him injuringhimself. We tried to

have him placed into the special division, but he would have no part of it. On

the first day of practice we were instantly relieved. It took him so long to

process where the ball was and he was so small and slow in running he was always

at least half a field away from the main action.

When in ninth grade mainstream PE and they began a unit on football. My

husband, a dear friend and I all said to at the same time " You know what

to do when you have the ball don't you? Throw it away as fast and as far as you

can!:

:o)

For our other two sons, PE in middle and high school is such a time of bonding

as they run/walk the mile (or two) - and wait for turns at things, form teams

and discuss the feelings shared by the less than athletic..... never had

that. He would still be running the mile as the class moved on, and the teacher

would be cheering his determination......

love,

yuka

Thoughts on A Day as a Senior at High School

Up until now we had joked in our family that 's lack of social

opportunity was framed by his tendency to perseverate, to have slightly

off-putting choices of conversation and habits, and by his slightly

compulsive habits in terms of his school work and the support of his school

work. His sheer focus and determination while navigating the halls of school

do not lend themselves to social banter. Speech Therapists have worked on

pragmatics in language and articulation, wondering why that hasn't improved

the social scene. This school year 's younger brother is at the same

school with and for the first time I have a chance to see

through eyes outside of teachers and translators inside the classroom. I

started to become aware that the behaviors are a demonstration of something

deeper. I started to use the words " discernment " and " judgment " .

didn't seem to be able to discern or judge who would be a potential friend.

Then I looked at other behaviors he has - how infrequently he takes the

opportunity to re-evaluate something, how he just proceeds with persistence

and patience any plan. Whether it is in a table game with friends, selecting

new aircrafts on a video game or alternating breaks and homework time - he

sets a pattern and sticks to it without judgment, without attachment without

re-evaluation. Things we had previously witnessed under the umbrella of

" compulsion " . Now I am starting to have a glimpse of why he hasn't developed

those skills - or rather what he has been focusing his energy on in such a

primary way as to exclude time from developing these skills.

In just the seven weeks since this school term started I have learned so

much about (our son with CHARGE who is senior at high school) daily

through Elliot's ('s younger brother who is now a freshman/ninth grader

at the same high school) eyes and ears. Half what Elliot sees and half what

he hears from 's classmates that are in some of Elliot's classes. Some

of it breaks my heart. One girl today asked Elliot if he was 's brother

(this story has been happening two or three times a week with different kids

approaching Elliot). She told Elliot she is in 's AP Govt class. She

also said she has been in many of his classes since seventh grade. She told

Elliot that is one of the nicest guys and is known by all the 'smart'

kids because he is such a nice and smart kid. When Elliot asked if he

knew , he wasn't sure. Elliot described her, and wasn't sure.

Elliot told the whole story, which made happy and also made him laugh,

and then said " maybe she sits in front of me. " This and other stories

like it make me realize how hard works to attend in class - to the

teacher, to the sign language translator, to keeping with physically

navigating, his physical school supplies and everything else. I really don't

know how he does it. His brace makes everything quite difficult. So after he

kneels and leans enough to get stuff out of his rolling backpack (with which

he regularly runs over other students) he had to position himself in the

chair in such a way that he can still see his paper enough to take notes yet

not be strangled too much by the brace, and also keep his head in a spot

where the FM system is giving him the least amount of static, keep his eye

on the interpreter, his eyes and ears on the teacher, his eyes on other

visual supports and his note paper. It was all consuming enough before the

brace. It's no wonder he hasn't had the time to notice that several students

have been in several classes with him each year for six years! So I chose my

words carefully - and we talked about how different 's school

experience is. How much I admire his determination and his success. How I

always knew it was a given that he works hard, and yet I felt as if for the

first time I really could feel how consuming the effort is. And I think it

opened 's eyes to the possibilities he hasn't seen. He was pleased at

least of evidence of being known and liked in a way that resonated as true.

yuka

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Yuka-

So I guess whether Aubrie is participating in the midst of things or on the

sidelines, she'll miss out on the socialization anyway. So she might as

well participate in a safe way. With soccer this year, she couldn't keep up

with the others, but it stressed her out and she spent the game in tears.

Luckily, I convinced her to give it up - and ISD Girl Scouts conflicted with

soccer practice providing a nice alternative and easy way out.

With only 5 kids in the class, she's having more time and opportunity for

socialization. But then she can only talk with one of those and isn't

signing well enough for in-depth interaction with the others. Perhaps in

time.

Michele W

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Dear Yuka,

Oh thank you-you got the soccer, football stories out just in time-

I was about to lose the battle of the tears.

This pulls me so far out of the pink that my mind is frantically

churning out every positive affirmation I've ever heard or read in my

entire life, in an attempt to save me and save you and save us all

from the ugly beastie.(pain, regret, disappointment, etc. etc.)

Oh gosh, I admire your ability to look on it with an open heart, and

still stay standing.

Oh-I just read your post on analgesics! LOL! I'm good again!!!

Not for nothing, but Di's socialization, self-expression, confidence,

etc. has really picked up speed over the last few years.

It reminds me of the little kids, who are having to get the standing

down first, to then get on with the talking.

So, maybe it ain't over till its over. Although, of course I totally

agree with you that socialization should not be back-burnered in

favor of anything else, and must be incorporated into day-to-day

experience-so what if we have to help " the natural " along. Haven't we

always? lol.

Thank you for being you,

in Ma.

>

> Your reply has brought back two bittersweet memories. When

was in AYSO at nine years of age, we worried to death about him

injuringhimself. We tried to have him placed into the special

division, but he would have no part of it. On the first day of

practice we were instantly relieved. It took him so long to process

where the ball was and he was so small and slow in running he was

always at least half a field away from the main action.

>

> When in ninth grade mainstream PE and they began a unit on

football. My husband, a dear friend and I all said to at the

same time " You know what to do when you have the ball don't you?

Throw it away as fast and as far as you can!:

>

> :o)

>

> For our other two sons, PE in middle and high school is such a time

of bonding as they run/walk the mile (or two) - and wait for turns at

things, form teams and discuss the feelings shared by the less than

athletic..... never had that. He would still be running the

mile as the class moved on, and the teacher would be cheering his

determination......

>

> love,

> yuka

>

> Thoughts on A Day as a Senior at High School

>

> Up until now we had joked in our family that 's lack of

social

> opportunity was framed by his tendency to perseverate, to have

slightly

> off-putting choices of conversation and habits, and by his

slightly

> compulsive habits in terms of his school work and the support of

his school

> work. His sheer focus and determination while navigating the

halls of school

> do not lend themselves to social banter. Speech Therapists have

worked on

> pragmatics in language and articulation, wondering why that

hasn't improved

> the social scene. This school year 's younger brother is at

the same

> school with and for the first time I have a chance to see

> through eyes outside of teachers and translators inside the

classroom. I

> started to become aware that the behaviors are a demonstration of

something

> deeper. I started to use the words " discernment " and " judgment " .

> didn't seem to be able to discern or judge who would be a

potential friend.

> Then I looked at other behaviors he has - how infrequently he

takes the

> opportunity to re-evaluate something, how he just proceeds with

persistence

> and patience any plan. Whether it is in a table game with

friends, selecting

> new aircrafts on a video game or alternating breaks and homework

time - he

> sets a pattern and sticks to it without judgment, without

attachment without

> re-evaluation. Things we had previously witnessed under the

umbrella of

> " compulsion " . Now I am starting to have a glimpse of why he

hasn't developed

> those skills - or rather what he has been focusing his energy on

in such a

> primary way as to exclude time from developing these skills.

>

> In just the seven weeks since this school term started I have

learned so

> much about (our son with CHARGE who is senior at high

school) daily

> through Elliot's ('s younger brother who is now a

freshman/ninth grader

> at the same high school) eyes and ears. Half what Elliot sees and

half what

> he hears from 's classmates that are in some of Elliot's

classes. Some

> of it breaks my heart. One girl today asked Elliot if he was

's brother

> (this story has been happening two or three times a week with

different kids

> approaching Elliot). She told Elliot she is in 's AP Govt

class. She

> also said she has been in many of his classes since seventh

grade. She told

> Elliot that is one of the nicest guys and is known by all

the 'smart'

> kids because he is such a nice and smart kid. When Elliot asked

if he

> knew , he wasn't sure. Elliot described her, and

wasn't sure.

> Elliot told the whole story, which made happy and also made

him laugh,

> and then said " maybe she sits in front of me. " This and

other stories

> like it make me realize how hard works to attend in class -

to the

> teacher, to the sign language translator, to keeping with

physically

> navigating, his physical school supplies and everything else. I

really don't

> know how he does it. His brace makes everything quite difficult.

So after he

> kneels and leans enough to get stuff out of his rolling backpack

(with which

> he regularly runs over other students) he had to position himself

in the

> chair in such a way that he can still see his paper enough to

take notes yet

> not be strangled too much by the brace, and also keep his head in

a spot

> where the FM system is giving him the least amount of static,

keep his eye

> on the interpreter, his eyes and ears on the teacher, his eyes on

other

> visual supports and his note paper. It was all consuming enough

before the

> brace. It's no wonder he hasn't had the time to notice that

several students

> have been in several classes with him each year for six years! So

I chose my

> words carefully - and we talked about how different 's school

> experience is. How much I admire his determination and his

success. How I

> always knew it was a given that he works hard, and yet I felt as

if for the

> first time I really could feel how consuming the effort is. And I

think it

> opened 's eyes to the possibilities he hasn't seen. He was

pleased at

> least of evidence of being known and liked in a way that

resonated as true.

>

> yuka

>

>

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