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In a message dated 7/14/99 4:33:06 PM Pacific Daylight Time,

pmzf@... writes:

<< The audiologist have leaned against a hearing aid. Most of the things i

have read, say give your kids all the advantages you can to help them develop

to their fullest. In my eyes, that includes a hearing aid. Does anyone have

a child with a mild loss in one ear and use an aid? Any advice? Suggestions?

She is being tested again August 3rd, to see if the loss is progressive.

>>

My daughter was just diagnosed with a mild low frequency loss in both ears.

We have only been tested once so far and that audiologist said not to aid her

but did recommend a fm system. I also thought the same - give them every

advantage...I talked to another audiologist who said aiding her may make it

harder for her to distinguish the higher frequencies. I'm currently stalling

about what to do smile

There are also two or three moms on here who have discovered some type of

connection between hearing loss and stomach problems. Hopefully you will

hear from them about the similarities with your daughter.

Good luck

Terry

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  • 1 month later...

Hello Everyone,

My name is Keedy and I have joined the list recently.

I am the Mom to 3 children. Camille, and Kendra. Kendra is 12

years old and has a rare syndrome named CHARGE Syndrome (just like Casey's

).

Kendra like many children with CHARGE has experienced multiple surgeries and

hospitalizations to ensure adequate airway and for other reasons such as for a

tracheostomy, gastrostomy and vascular surgery. Kendra's early years led her

through 30 surgeries and we are ever thankful for her relative good health

now. She no longer has either a gastrostomy or a tracheostomy.

Kendra has several issues that contribute to difficulty in acquiring full

usage of language. This is one of our biggest challenges currently. It is my

opinion that she will be able to gain more meaningful language but it has been

quite a struggle. Unlike many children, Kendra learned to read before she

learned to sign or speak and the reading has been a terrific help in making a

bridge to signing. This reading before otherwise communicating is on the

hyperlexic scale and can be seen in children who have autism-like conditions.

Picture communication has also helped Kendra. Kendra is profoundly deaf and

also has Mondini.

I think Kendra has an apraxic condition that partly contibutes to the language

difficulties and we do see progress with frequent practice and lots of contact

with others who communicate well with her. Any AND all language ideas are

greatly appreciated!!

For in Washington State, we are in Portland, Oregon. ;-) For Ede, I'm

glad to see you as I just am ordering The HANDMADE COUNTING Book which you

brought to my attention I believe. For everyone on the list, I'm glad to be

here. You are very supportive. For anyone I know from other lists, nice to

see you!!

Keedy

Mom to Kendra, 12, Deaf CHARGE Syndrome, , 18 and Camille, 21

Portland, OR

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  • 3 weeks later...

In a message dated 09/06/1999 4:33:27 PM Pacific Daylight Time,

dehahn@... writes:

<< n PSE: I go to store

I go store

isn't complete.

>>

This is signed english not PSE and not Pidgin

Terry

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In a message dated 9/6/99 9:23:52 PM Eastern Daylight Time, wog@...

writes:

<< I am in Canada but any info that you get at the work shop that you could

pass along through the list my private e-mail or snail mail would be greatly

appriciated. >>

Sure no problem. The conference is in late October and I will definitely let

you know what they say. I forgot the ages you might be interested in. I

requested someone from my school district to attend and they were interested.

Maybe we will attend different workshops and I'll see what I can get. Lori

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In a message dated 09/06/1999 6:24:19 PM Pacific Daylight Time,

JMHBOXES@... writes:

<< From: JMHBOXES@...

Terry~I think earlier had said that he was not going to debate this

any

longer. >>

JMHBOXES: I believe I can read also Thanks very much for pointing that out

to me. I only debate things I know for a fact.

Signed

Interpreter

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It is too bad people who are only coming here to look for support and advice

have to deal with this. I think this is the last thing I need to deal with

right now. By the way, everyone has their own interpretations of things. I

also do pidgin sign with both of my deaf daughters , so I feel as though I

know what I am talking about.

Misty

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Lori

Thanks so much! My kids are ~ three and a half and hearing...loves

books and reading. And ~ five in October with a progressive loss he

also loves books.

Any info that you get that could be copied and mailed I would be happy to

cover the cost.

At 09:28 PM 9/6/99 EDT, you wrote:

>From: LCorc16@...

>

>In a message dated 9/6/99 9:23:52 PM Eastern Daylight Time, wog@...

>writes:

>

><< I am in Canada but any info that you get at the work shop that you could

> pass along through the list my private e-mail or snail mail would be greatly

> appriciated. >>

>Sure no problem. The conference is in late October and I will definitely let

>you know what they say. I forgot the ages you might be interested in. I

>requested someone from my school district to attend and they were interested.

>Maybe we will attend different workshops and I'll see what I can get. Lori

>

>---------------------------

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I live in pittsfield, I'm planning on going to the second day of the e

conference.I have an eight year old daughter

LCorc16@... wrote:

> From: LCorc16@...

>

> In a message dated 9/6/99 8:56:22 PM Eastern Daylight Time, dehahn@...

> writes:

>

> << I live in Belchertown and work at Quantum in Shrewsbury. We used to live

> in

> Millbury, and have lots of friends in the Worcester area. >>

> Hi Chris! I first taught at Belchertown High and what a beautiful area! I

> grew up in Worcester. Did you have your children when you were living in

> Millbury? I found my town to be very difficult. We fought to send Audrey to

> Worcester for the summer and what a difference. I am going to a conference in

> Springfield put on by the e school called but don't quote me - Hearing

> Impaired: Language and Literacy. Are you going? Or is anyone else who lives

> around Massachusetts attending? I would love to hook up with anyone. I am so

> excited because my daughter is three and I want to hear what they recommend

> for reading and writing. If anyone is interested email me and I can tell you

> more. The application and types of workshops being offered are upstairs and I

> ma lazy right now. I am avoiding my work writing a syllabus for my classes

> which start next week. bye Lori

>

> ---------------------------

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  • 2 years later...

>Even though I

> am sad about the boys' diagnosis I am so relieved to know that

> they

> aren't the way they are because I am a bad parent.

Cori,

When the psych looked at us and said, " He's autistic, " I actually laughed and

clapped my hands. The sheer joy and relief of there being a real problem,

something we could do, was amazing. " Yay! " I laughed, " It's not me! I'm not a

bad mother! "

At the time I thought I must be crazy -- but in the two years (2 1/2, oh my

gosh) since then, I've learned that it's a VERY common reaction!

Jacquie

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  • 7 years later...
Guest guest

I am new to this list but not new to ASD. I have been around the block what

feels like a million times as my ASD daughter is now 16. Currently we are

starting to work with Lucas Rameriz from Thoughtful House in Texas (we live in

MN) and I want to beleive that I am going to get good advice and direction this

time around. It is difficult to know which DAN doc to see and I picked him

because we did a workup with Dr. Krigsman last summer and I thought maybe it

would be a more comprehensive way to go. Any thoughts or recommendations would

be much appreciated.

Thanks

Tamara

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