Re: Hello from Kim L

January 18, 2007

glad you are back--have missed hearing from you.

Hello from Kim L

Hello Everyone,

It has been a long time and my head is finally coming above water -

finally to the point of dealing with current life rather than catching

up from when " life was happening " . I have missed all of you and am

still afraid that I will not manage to stay up with this active group,

but I hope I can.

Dylan is having a fabulous year growth wise. He is finally having a

sense of self, able to draw a body and so on, is able to share

pleasure with me when we read his experience books, has grown leaps

and bounds in understanding receptive ASL and has even made some leaps

with expressive. He even played soccer with a cousin, eye contact

with the boy and attention to the ball. He is a delight.

School on the other hand, has been a bit on the stressful side this

year. I am hoping things will take a shift - we have a regularly

scheduled staffing tomorrow, which will be telling. The majority of

the team are great and understand the impact all of Dylan's sensory

losses have on his learning and how he functions in the world.

Unfortunately there are others who don't.

--

Kim Lauger

Certified HANDLE Screener and Intern

Mom to Dylan 10 CHaRGE, Kayla 16 and loving to drive, Tyler 18 and

living on his own

and wife to Roy who makes all things possible in our lives.

January 18, 2007

Kim!!!

How wonderful to hear from you!! You have been sorely missed, but it sure

sounds like things are going very well. I am so glad you stopped by to let

us know these fun things.

pam

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

January 19, 2007

Hi , et al...

I think that part of the growth is simply all the work we have done

over the years and him being ready now for what we have tried to do

all along on the other hand there are changes that have made it

possible for that info to now make sense to him.

We have had so many types of experience books, to try to have ways to

communicate about what happens during his school day or at home; we

have tried numerous ways to attempt to teach him sense of self, body

concepts and so on; we have tried many ways to enhance his use of

vision; we have tried many ways to get him to understand that a

response is required and the list goes on...

But this year the strategies are making sense and providing a place to

expand from.

From a HANDLE perspective, we had to first get his brain able to have

an organized way to process the information coming in from his cranial

nerves (in my opinion, a key factor in many of the CHARGE

difficulties). That is what we focused on 2 years ago, and he became

more engaged with the world, watching and learning.

Now he has moved up to where he is beginning to FEEL and understand

his sense of self. From a HANDLE perspective, propriocpetive awarness

is not just deep muscles sensations in the proprioceptors, but how all

senses come together to give us a sense of self in relation to the

world and from one body part to the other. and if that sense is

impacted it makes sleep etc difficult, interacting with others, some

physical activities, but also understanding math, because math is all

about relationships. I think this proprioceptive growth is largely

responsible for Dylan now able to make sense of the experience books

where every day they co-draw books of Dylan and Doe and what they did

that day. I am amazed that without words to guide us, he can now draw

a body with a complete face, a body and 2 arms and 2 legs and when we

read these books together, he laughs at all the right places - we are

able to share in a past experience. I cannot tell you how divine that

is. Expressive language is still hard, when he does it best is when

he is lying flat on his back (hard to have that happen at school), but

it makes sense, because his body can be focused on the sign, not on

all the work required to keep his body upright, stabilize his vision,

and so on. His energy is focused on the task at hand - making the

signs, which requires great muscle tone. His is improving - he even

hung off the monkey bars by himself!!! The swimming pool is awesome,

because proprioception is not an issue in the water, he has full body

awareness from the water surrounding him.

The growth is so great, the frustration is that there are still so

many things that can overwhelm his systems and push him back to a more

full body, sensory feeling approach to the world. I can understand

this, but there are those that think if he can do something one time,

he should be able to do it all the time, and don't understand the

impact of his multiple sensory impairments. Pam - I would say that

there are those who think I do not expect enough of Dylan, rather than

recognizing that I expect the most, but I think to get there we must

respect his sensory needs - when he is overwhelmed, how is demanding

more going to help him move forward, I think it shuts him down or

pushes him into frantic (overwhelm). When I do my Box of

Deafblindness, What is Intervention, Role of the Intervener talk this

is covered so much. All of our Interveners get this training, but all

administrators and all teachers don't, so we simply come at it from a

different understanding of how to educate him and when it comes down

to it, I often feel I am still perceived as " JUST A PARENT " . I am a

bit anxious about tomorrow's staffing, but am hopeful it will simply

be the medium to discuss where to go next with communication etc....

- thanks for asking about my business too.

I am a Certified HANDLE screener, which doesn't do much good for a

child with CHARGE, but does for sibs like my Tyler with attention and

learning issues.

In addition I have completed my advanced training and am totally

immersed in my internship (which simply means I see clients with a

supervisor). I am traveling about a week a month, which is tough, but

being able to work with kids like Dylan, and helping families

understand those odd behaviors from a new perspective, and then

teaching them some things they can do - I love it!

Kim

Certified HANDLE Screener and HANDLE Intern

Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

and wife to Roy who makes all things possible in our lives.

>

> Hi Kim,

> You've been missed! It certainly is wonderful to hear of Dylan's great

> strides.

> Hard won victories-lots of work for Mom, but so worth every minute.

> How's the business? You made alot of big changes in one year.

> I' m sure you enjoy it, I just wonder if it, too, is keeping you incredibly

> busy.

> I can't imagine who on the school team would dare question your

> insights-LOL.

> I'd like to be a fly on that wall.

> Effective sensory integration produced these terrific achievements for

> Dylan?

> Isn't that massively encouraging for everyone here.

> I've seen HANDLE come up more and more on various Charge googles.

> Are you writing as well?

> Fill us in on all the good stuff!

>

> in Ma. (,21 yrs)

>

January 19, 2007

Kim-

How wonderful to hear from you!!! Sounds like there have been some great joys

in your time away -- along with ongoing " stuff " . I don't think any of us will

ever be free of the " stuff " so it's nice when some joys get thrown in!

Michele W

Aubrie's mom 9 yrs CHaRgE and 15 yrs (who started drivers' ed yesterday!)

January 19, 2007

kim great to c u in here again a lot has happend for me im acutaly settled

in my norhtcot prtgram after a lot of changing with a few more to coem

twenty four hours of program a week!!!!!! get that every one from 18 to 24

im still in the high funding but hey better than nothing getting my jstoma

out in feb and im eating a bit now i no what u mean bout soem getting it and

others not thats how it has been with me last year with tae to i still cant

get to tafe hugs ellen

>

> Hi , et al...

>

> I think that part of the growth is simply all the work we have done

> over the years and him being ready now for what we have tried to do

> all along on the other hand there are changes that have made it

> possible for that info to now make sense to him.

>

> We have had so many types of experience books, to try to have ways to

> communicate about what happens during his school day or at home; we

> have tried numerous ways to attempt to teach him sense of self, body

> concepts and so on; we have tried many ways to enhance his use of

> vision; we have tried many ways to get him to understand that a

> response is required and the list goes on...

>

> But this year the strategies are making sense and providing a place to

> expand from.

> From a HANDLE perspective, we had to first get his brain able to have

> an organized way to process the information coming in from his cranial

> nerves (in my opinion, a key factor in many of the CHARGE

> difficulties). That is what we focused on 2 years ago, and he became

> more engaged with the world, watching and learning.

> Now he has moved up to where he is beginning to FEEL and understand

> his sense of self. From a HANDLE perspective, propriocpetive awarness

> is not just deep muscles sensations in the proprioceptors, but how all

> senses come together to give us a sense of self in relation to the

> world and from one body part to the other. and if that sense is

> impacted it makes sleep etc difficult, interacting with others, some

> physical activities, but also understanding math, because math is all

> about relationships. I think this proprioceptive growth is largely

> responsible for Dylan now able to make sense of the experience books

> where every day they co-draw books of Dylan and Doe and what they did

> that day. I am amazed that without words to guide us, he can now draw

> a body with a complete face, a body and 2 arms and 2 legs and when we

> read these books together, he laughs at all the right places - we are

> able to share in a past experience. I cannot tell you how divine that

> is. Expressive language is still hard, when he does it best is when

> he is lying flat on his back (hard to have that happen at school), but

> it makes sense, because his body can be focused on the sign, not on

> all the work required to keep his body upright, stabilize his vision,

> and so on. His energy is focused on the task at hand - making the

> signs, which requires great muscle tone. His is improving - he even

> hung off the monkey bars by himself!!! The swimming pool is awesome,

> because proprioception is not an issue in the water, he has full body

> awareness from the water surrounding him.

>

> The growth is so great, the frustration is that there are still so

> many things that can overwhelm his systems and push him back to a more

> full body, sensory feeling approach to the world. I can understand

> this, but there are those that think if he can do something one time,

> he should be able to do it all the time, and don't understand the

> impact of his multiple sensory impairments. Pam - I would say that

> there are those who think I do not expect enough of Dylan, rather than

> recognizing that I expect the most, but I think to get there we must

> respect his sensory needs - when he is overwhelmed, how is demanding

> more going to help him move forward, I think it shuts him down or

> pushes him into frantic (overwhelm). When I do my Box of

> Deafblindness, What is Intervention, Role of the Intervener talk this

> is covered so much. All of our Interveners get this training, but all

> administrators and all teachers don't, so we simply come at it from a

> different understanding of how to educate him and when it comes down

> to it, I often feel I am still perceived as " JUST A PARENT " . I am a

> bit anxious about tomorrow's staffing, but am hopeful it will simply

> be the medium to discuss where to go next with communication etc....

>

> - thanks for asking about my business too.

> I am a Certified HANDLE screener, which doesn't do much good for a

> child with CHARGE, but does for sibs like my Tyler with attention and

> learning issues.

> In addition I have completed my advanced training and am totally

> immersed in my internship (which simply means I see clients with a

> supervisor). I am traveling about a week a month, which is tough, but

> being able to work with kids like Dylan, and helping families

> understand those odd behaviors from a new perspective, and then

> teaching them some things they can do - I love it!

>

> Kim

> Certified HANDLE Screener and HANDLE Intern

> Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

> and wife to Roy who makes all things possible in our lives.

>

> On 1/18/07, mdlinda@... <mdlinda%40aol.com>

<mdlinda@...<mdlinda%40aol.com>>

> wrote:

> >

> > Hi Kim,

> > You've been missed! It certainly is wonderful to hear of Dylan's great

> > strides.

> > Hard won victories-lots of work for Mom, but so worth every minute.

> > How's the business? You made alot of big changes in one year.

> > I' m sure you enjoy it, I just wonder if it, too, is keeping you

> incredibly

> > busy.

> > I can't imagine who on the school team would dare question your

> > insights-LOL.

> > I'd like to be a fly on that wall.

> > Effective sensory integration produced these terrific achievements for

> > Dylan?

> > Isn't that massively encouraging for everyone here.

> > I've seen HANDLE come up more and more on various Charge googles.

> > Are you writing as well?

> > Fill us in on all the good stuff!

> >

> > in Ma. (,21 yrs)

> >

January 19, 2007

yeah i ditto that michelle still never free of my stuff but hey i am doing

quite good arent i LOL and my comunity particpation funding has increased to

24 hours a week not 18 coz at the end of last year they were saying oh ull

get shorter days but now looks like longer days which is good i do like

norhcott

>

> Kim-

> How wonderful to hear from you!!! Sounds like there have been some great

> joys in your time away -- along with ongoing " stuff " . I don't think any of

> us will ever be free of the " stuff " so it's nice when some joys get thrown

> in!

>

> Michele W

> Aubrie's mom 9 yrs CHaRgE and 15 yrs (who started drivers' ed

> yesterday!)

>

January 19, 2007

-

It all sounds so wonderful! I had to smile though that being in the pool is

good for Dylan. Aubrie seems to lose her sense of body awareness in the water.

In the pool, I think some of it has to do with losing the horizon line when she

lies back and stuff. But she even had a very hard time getting used to the hot

tub (yes, we got a new hot tub! What a luxury!). She didn't want to move from

her seat at all until she had some experience and still prefers to sit still in

her spot with the jets completely off. Interesting.

Anyway -- I always enjoy your descriptions of Dylan. I learn so much and feel

like I am right there with you all.

Michele W

January 19, 2007

Ellen,

You have had some big changes. Glad you are well.

Kim

>

> kim great to c u in here again a lot has happend for me im acutaly settled

> in my norhtcot prtgram after a lot of changing with a few more to coem

> twenty four hours of program a week!!!!!! get that every one from 18 to 24

> im still in the high funding but hey better than nothing getting my jstoma

> out in feb and im eating a bit now i no what u mean bout soem getting it

> and

> others not thats how it has been with me last year with tae to i still cant

> get to tafe hugs ellen

>

> >

> > Hi , et al...

> >

> > I think that part of the growth is simply all the work we have done

> > over the years and him being ready now for what we have tried to do

> > all along on the other hand there are changes that have made it

> > possible for that info to now make sense to him.

> >

> > We have had so many types of experience books, to try to have ways to

> > communicate about what happens during his school day or at home; we

> > have tried numerous ways to attempt to teach him sense of self, body

> > concepts and so on; we have tried many ways to enhance his use of

> > vision; we have tried many ways to get him to understand that a

> > response is required and the list goes on...

> >

> > But this year the strategies are making sense and providing a place to

> > expand from.

> > From a HANDLE perspective, we had to first get his brain able to have

> > an organized way to process the information coming in from his cranial

> > nerves (in my opinion, a key factor in many of the CHARGE

> > difficulties). That is what we focused on 2 years ago, and he became

> > more engaged with the world, watching and learning.

> > Now he has moved up to where he is beginning to FEEL and understand

> > his sense of self. From a HANDLE perspective, propriocpetive awarness

> > is not just deep muscles sensations in the proprioceptors, but how all

> > senses come together to give us a sense of self in relation to the

> > world and from one body part to the other. and if that sense is

> > impacted it makes sleep etc difficult, interacting with others, some

> > physical activities, but also understanding math, because math is all

> > about relationships. I think this proprioceptive growth is largely

> > responsible for Dylan now able to make sense of the experience books

> > where every day they co-draw books of Dylan and Doe and what they did

> > that day. I am amazed that without words to guide us, he can now draw

> > a body with a complete face, a body and 2 arms and 2 legs and when we

> > read these books together, he laughs at all the right places - we are

> > able to share in a past experience. I cannot tell you how divine that

> > is. Expressive language is still hard, when he does it best is when

> > he is lying flat on his back (hard to have that happen at school), but

> > it makes sense, because his body can be focused on the sign, not on

> > all the work required to keep his body upright, stabilize his vision,

> > and so on. His energy is focused on the task at hand - making the

> > signs, which requires great muscle tone. His is improving - he even

> > hung off the monkey bars by himself!!! The swimming pool is awesome,

> > because proprioception is not an issue in the water, he has full body

> > awareness from the water surrounding him.

> >

> > The growth is so great, the frustration is that there are still so

> > many things that can overwhelm his systems and push him back to a more

> > full body, sensory feeling approach to the world. I can understand

> > this, but there are those that think if he can do something one time,

> > he should be able to do it all the time, and don't understand the

> > impact of his multiple sensory impairments. Pam - I would say that

> > there are those who think I do not expect enough of Dylan, rather than

> > recognizing that I expect the most, but I think to get there we must

> > respect his sensory needs - when he is overwhelmed, how is demanding

> > more going to help him move forward, I think it shuts him down or

> > pushes him into frantic (overwhelm). When I do my Box of

> > Deafblindness, What is Intervention, Role of the Intervener talk this

> > is covered so much. All of our Interveners get this training, but all

> > administrators and all teachers don't, so we simply come at it from a

> > different understanding of how to educate him and when it comes down

> > to it, I often feel I am still perceived as " JUST A PARENT " . I am a

> > bit anxious about tomorrow's staffing, but am hopeful it will simply

> > be the medium to discuss where to go next with communication etc....

> >

> > - thanks for asking about my business too.

> > I am a Certified HANDLE screener, which doesn't do much good for a

> > child with CHARGE, but does for sibs like my Tyler with attention and

> > learning issues.

> > In addition I have completed my advanced training and am totally

> > immersed in my internship (which simply means I see clients with a

> > supervisor). I am traveling about a week a month, which is tough, but

> > being able to work with kids like Dylan, and helping families

> > understand those odd behaviors from a new perspective, and then

> > teaching them some things they can do - I love it!

> >

> > Kim

> > Certified HANDLE Screener and HANDLE Intern

> > Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

> > and wife to Roy who makes all things possible in our lives.

> >

> > On 1/18/07, mdlinda@... <mdlinda%40aol.com>

> <mdlinda@...<mdlinda%40aol.com>>

> > wrote:

> > >

> > > Hi Kim,

> > > You've been missed! It certainly is wonderful to hear of Dylan's great

> > > strides.

> > > Hard won victories-lots of work for Mom, but so worth every minute.

> > > How's the business? You made alot of big changes in one year.

> > > I' m sure you enjoy it, I just wonder if it, too, is keeping you

> > incredibly

> > > busy.

> > > I can't imagine who on the school team would dare question your

> > > insights-LOL.

> > > I'd like to be a fly on that wall.

> > > Effective sensory integration produced these terrific achievements for

> > > Dylan?

> > > Isn't that massively encouraging for everyone here.

> > > I've seen HANDLE come up more and more on various Charge googles.

> > > Are you writing as well?

> > > Fill us in on all the good stuff!

> > >

> > > in Ma. (,21 yrs)

> > >

January 20, 2007

Michele,

Swimming has been an ongoing thing. Dylan did not take a bath for

years - only showers being held by Dad. His Intervener focused for

months on getting him used to the water and even is the one who got

him comfortable in the tub at home. Then, in elementary his school

has a pool so part of PE each year is swimming and his Intervener (not

the same one) has been great at teaching him to swim - the therapuetic

pool that is heated and is indoors (blocks that bright sunlight in his

eyes) has also made a huge difference. It is funny that his too most

independent thinks are horse back riding and swimming, when both of

those could be terrifying for others; both have been long works in

progress - I show a picture of him in Intervener training, where he is

totally withdrawn into himself for fear of even touching a pony in

preschool. He has come along way.

Kim

>

> -

> It all sounds so wonderful! I had to smile though that being in the pool is

> good for Dylan. Aubrie seems to lose her sense of body awareness in the

> water. In the pool, I think some of it has to do with losing the horizon

> line when she lies back and stuff. But she even had a very hard time getting

> used to the hot tub (yes, we got a new hot tub! What a luxury!). She didn't

> want to move from her seat at all until she had some experience and still

> prefers to sit still in her spot with the jets completely off. Interesting.

>

> Anyway -- I always enjoy your descriptions of Dylan. I learn so much and

> feel like I am right there with you all.

>

> Michele W

>

January 21, 2007

Kim,

this is an amazing post (and has reminded me of how much I have missed you!). I

love this wonderful chronicle of Dylan and what he has done and how you have

moved from one stage of learning to another --and see such concrete results.

It must be a challenge when you are told or perceive that you don't expect

enough of Dylan. If they understood what you have written here and that the

expectation of EVERYTHING is a fluid thing--like his abilities to be in a

specific moment (which can be dependent on the environment and all that is

there-sound, visual distractions, physical sensations, other's perceptions of

him, etc).

I know there is another email from you, so I am ending here and will see the

next one before I write any more here (although given the hour and my low

alertness right now, perhaps all of this is a mistake and not making sense, ha)