Re: Hearing & eyes

January 17, 2007

Cathie,

I am thrilled to hear the good news about 's eyes and ears. All that good

news HAS to help your stomach heal! :-)

I so agree with the idea to keep the FM as 's responses and processing

issues are considered more fully.

We also had a situation wherein Kendra's hearing tested much better than had

been previously seen. It truly is amazing what is not known or fully understood

yet about hearing and processing.

Thank you for sending the wonderful news!

:-) :-) :-)

Mom to Kendra, and Camille

Hearing & eyes

We have had a really busy couple weeks, Perkins last week and this week mon

and Tuesday we were at CHOPS (Childrens Hosp of PHilly).! Then I got the

stomach virus while there ughhhhhhhhhhhhh

anway, they were ready to maybe plan more eye surgery for but her

pressures have stabliized again, with the 5 drops she is on, so we bought more

time!

Even more good news, now that has been wearing a hearing aide again

(last 6 months) (even though we have been told she is profoundly deaf), she

tested today w/ the aide on at 30 dcb!, they turned it up. we are very happy,

Of course she still has a lot of inconsistant responses. But for someone

that has gone from completely no hearing responses w/her ABR's, a BAHA implant

that doesn't work this is good. With auditory neuropathy, we know her

processing is a big issue, but she is responding! Her school recently told us

they

are not seeing her respond to the FM so they were suggesting we stop using

it, but the experts in the last 2 weeks have suggested differently, she needs

time to process. I have heard this so much on this listserve, thanks.

SO lots of information to process over the last 2 weeks, my mind is spinning

no to mention my stomache!

Thanks to all of you for all your input.

Cathie, mom to 11 yr CHARGEr

January 18, 2007

Michele/Cathie,

Ain¹t it the truth!!

pam

>

> Cathie-

>

> That is awesome!!! You know, I have had to work hard to get the teachers to

> understand that Aubrie's hearing aids and FM give her benefit - even if they

> don't see the evidence of it. They used to say that she responded the same

> whether she had them on or not. Well, that's simply not true. Unless you

> aren't watching closely or don't know what to look for. could be

> getting loads of benefit and just not be showing outward signs that the

> teachers can recognize. You stick to your guns and go with your gut (except

> when your gut has the flu!).

>

> Michele W

> Aubrie's mom

>

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

January 18, 2007

Cathie,

Such great news!!!!

pam

>

> We have had a really busy couple weeks, Perkins last week and this week mon

> and Tuesday we were at CHOPS (Childrens Hosp of PHilly).! Then I got the

> stomach virus while there ughhhhhhhhhhhhh

> anway, they were ready to maybe plan more eye surgery for but her

> pressures have stabliized again, with the 5 drops she is on, so we bought more

> time!

> Even more good news, now that has been wearing a hearing aide again

> (last 6 months) (even though we have been told she is profoundly deaf), she

> tested today w/ the aide on at 30 dcb!, they turned it up. we are very

> happy,

> Of course she still has a lot of inconsistant responses. But for someone

> that has gone from completely no hearing responses w/her ABR's, a BAHA

> implant

> that doesn't work this is good. With auditory neuropathy, we know her

> processing is a big issue, but she is responding! Her school recently told

> us they

> are not seeing her respond to the FM so they were suggesting we stop using

> it, but the experts in the last 2 weeks have suggested differently, she

> needs

> time to process. I have heard this so much on this listserve, thanks.

> SO lots of information to process over the last 2 weeks, my mind is spinning

> no to mention my stomache!

> Thanks to all of you for all your input.

> Cathie, mom to 11 yr CHARGEr

>

January 19, 2007

Cathie,

Great news on no eye surgery and on responding at 30dcb. Wow!

I remember being so struck at the Cleveland behavior symposium on 2

presenters mentioning processing time. One was Dr. van Dijk and he

was working with a nonverbal CHARGEr who needed 15 minutes to process

a transition. If you rushed it you got behaviors, if you gave him the

15 minutes he transitioned smoothly. Then Jude presented on

a school age girl where he did formal neuropsychiatric testing.

When asked to do task on immediate recall, the drawing was

unidentifiable. When it was done 15 minuntes later, the drawing was a

near exact replica of what she had been shown earlier. Does that mean

they all need 15 minutes processing time for everything, No. It does

tell me that our kids need time and that without it, 1) We are not

going to see the response and 2) that our kids are going to be easily

overwhelmed and confused if they don't have time to process. Stick to

your guns on the FM.

Kim

HANDLE Screener and Intern

Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

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

January 20, 2007

I think processing issues are very interesting to consider. The latency time

sometimes allows the person to integrate the information in a more meaningful

way.

I also fully believe that it does not need to be so. There are techniques and

approaches that can help lessen the amount of time necessary to process

information. Whenever we can respond more directly to something, the chances

for positive interactions can be improved. Often times, while an adult may

recognize that a child benefits by additional time to process, some kids may

not.

Understanding the need for the additional time truly is really important.

Looking at and considering possible ways to ameliorate the condition is also

critical in my book.

Mom to Kendra, and Camille

Re: Hearing & eyes

Cathie,

Great news on no eye surgery and on responding at 30dcb. Wow!

I remember being so struck at the Cleveland behavior symposium on 2

presenters mentioning processing time. One was Dr. van Dijk and he

was working with a nonverbal CHARGEr who needed 15 minutes to process

a transition. If you rushed it you got behaviors, if you gave him the

15 minutes he transitioned smoothly. Then Jude presented on

a school age girl where he did formal neuropsychiatric testing.

When asked to do task on immediate recall, the drawing was

unidentifiable. When it was done 15 minuntes later, the drawing was a

near exact replica of what she had been shown earlier. Does that mean

they all need 15 minutes processing time for everything, No. It does

tell me that our kids need time and that without it, 1) We are not

going to see the response and 2) that our kids are going to be easily

overwhelmed and confused if they don't have time to process. Stick to

your guns on the FM.

Kim

HANDLE Screener and Intern

Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

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

January 20, 2007

Hi .

I agree with you about the fact that adults may recognize the fact of process

time and kids won't necessarily. It becomes a conundrum when we think about

public school and all we want for the kids in terms of learning AND

socialization. It is a hard one. Do you have favorite strategies for

amelioriating the process time in terms of speeding it up? Time, of course;

strategies for building skills; presentation of materials, communication,

information (which one learns over time of understanding the student) but do you

have specifics that are " formulated " as it were in book form? Anything that you

have had success with with Kendra??

pam

January 21, 2007

Pam,

Great, great question!

For us, we do not work or oral/aural skills because Kendra doesn't have access

to hearing in general. So we don't have good strategies for auditory processing

improvements personally, but I think some good strategies are known. Some

people find that certain programs such as Fast Forward can help some kids with

certain kinds of processing issues. We have a friend whose son improved his

auditory processing with this program. There are also those who don't think

that kind of program can help. I think FMS can be very helpful for some people

with auditory processing issues. I think reading up on current research helps

one solidify one's own opinion.

For visual processing of information we do have a couple of strategies. Kendra

has had a couple of series' of vision therapy. The activities and games

utilized there helped her increase the speed with which she processed

information. One game, for example, required her to look straight ahead at a

board. The board had tiny lights on it. When a light went on, Kendra pushed a

button and the light turned off. Sometimes the lights were on the left,

sometimes on the right, sometimes near the top or bottom, and sometimes near the

center. Kendra was required to keep her head looking straight ahead. Kendra's

speed and reaction time increased dramatically through the course of the

treatment. There were other activities that addressed different vision issues.

Kendra has problems with focusing, tracking and binocularity in addition to

colobomas. All of those issues combine to cause problems in processing visual

information.

For Kendra, IRLEN lenses (colored lenses specifically selected for her) allows

her to look directly at objects or people or signing, when without them she

might not. Kendra's school is going to try utilizing some of the IRLEN overlays

and see if it is of help to Kendra. Many schools have found some success with

IRLEN products.

Another thing that is always an immediate help for Kendra is to write or print

on paper the information that is being signed. Immediately she will grasp what

wasn't clear to her moving in space (the sign). The information is signed

again and she will have reinforcement for the information. An example of the

use of this strategy is that watching a story being read and signed, Kendra

might not be able to take in the information as quickly as another student.

But, if someone writes a brief synopsis on paper for Kendra to see as she

watches the story being signed, her comprehension increases and speeds up a lot.

There is some difficulty for her watching the signing several feet ahead, but

the written information right in front of her helps clarify and she tunes right

into the storyteller/signer.

Along the same line, if a person sits with Kendra and keeps a running written

synopsis of what is being said in a movie, a lecture, at church, or whatever,

Kendra's attention and ease of processing the information is impacted

positively. Sometimes this strategy is utilized with line drawings as per a

strategy designed by a SLP named Ellen Arwood.

Kendra went to an osteopathic doctor who worked on her spine. One of the

impacts was that she had a greater awareness and seemingly better way to process

sensations on her body. For example, she became able to express which part of

her body the doctor was working on whether it was her left arm or right leg or

top of the spine, etc. HANDLE exercises also gave Kendra seemingly more

awareness of her body, as was seen in increased toileting success. I think that

in any way we increase the awareness of information reception, could be helpful

to our kids. Properly carried out sensory integration therapy can help by

helping some individuals to have better focus and in some other various ways.

These strategies help Kendra in the immediate time frame and probably help

improve her processing of information in general to some degree as well. But, I

do feel that overall, there is something biochemical that impacts her processing

and we work in many ways to find what ultimately leads to better eye contact,

better attention to communication, and higher interest in engaging with others

and understanding them. In order to do this we have talked with a number of

doctors about how she processes food and nutrition, because I believe that

affects how the brain works and how it ultimately processes information.

There is even a school in LA (and there are also probably others in other

locales as well), that includes a particular attention to the individuality of a

child's diet. The diets are specifically created to insure proper digestion of

nutrients.

There is a lot of information available on processing issues available through

the Learning Disabilities Association (LDA).

Many people believe that removing gluten and/or casein can be extremely

beneficial and affect how people process information. I think that sugar and

trans fats can also have distinctly negative effects on a person's ability to

process information.

My feeling is the more we learn about processing, the better we can be in

addressing some of the issues our kids face. There is information out there

that is not researched or worthwhile, and lots of other information that DOES

HAVE validity for certain individuals. It's wise to use cautiion when

evaluating various approaches because each child is different and some programs

are better and more reliable than others. I do think there are many, many books

that address either directly or indirectly such issues. Some of my favorites

are: The Omega 3 Connection, The Body Ecology Diet, Is this Your Child, and

Breaking the Vicioius Cycle. No one book would have the final word on all kinds

of processing, but I find the range of sources to be very encouraging and

exciting. I firmly believe that for some processing problems, biomedical

interventions (in our case not pharmaceutical), will hold at least part of the

answer.

:-)

Mom to Kendra, ALexander and Camille

RE: Hearing & eyes