Late DX

[Guest guest]

Hi Everyone,

here. I haven't posted in a while, but I've been keeping up

with reading all the posts & praying for everyone who needs prayers (I guess

we all do!). I just wanted to say that I identify so much with Marisa &

Terry. Thanks for sharing your lives with us. has always been

very delayed & I knew from the start that there was a wide range of

abilities amongst children with DS, so I just figured we had a child who was

at the low end of the spectrum & that was that! We gave every

opportunity we could - Early Intervention, swimmimg lessons, Music Therapy,

etc. We've also been told more than once that she shouldn't have Speech

Therapy becoause she's not talking yet! Now that she's 13 & is still not

talking, we've finally found a SLP (speech & language pathologist) who is

teaching her methods of communication - signing, making choices, etc. We're

just beginning to use PECS & I'm not sure they will work for her, but how

will we know if we don't try? Oh, I have recently discovered something very

interesting. All 's life I have thought of her as an aural learner

rather than a visual learner. I know that most children with DS are visual

learners, but I thought was the exception. Well, we have recently

begun working with an OT who is an expert in SI. She's really helping us a

lot & she told me that she thinks is a visual learner! Steph has

very little eye contact & has a " wandering eye " which can be either eye (she

chooses) & gives her the appearance of being cross-eyed. Our optometrist

who specializes in children with special needs, says her vision is fine &

that she has a depth perception problem (we knew this). Anyway, it's been a

real revelation to me to think of Steph as being a visual learner. She's

always loved music so much & never was interested in the T.V. or books much

(other than to chew, mouth or rip them!).

Marisa & Terry, I ,too, have never felt that I belonged to the DS

support groups. It has been SOOOO wonderful to find this group & to read

Disabilities Solutions (Thanks, Joan) & see my child in the pages! We also

went through the hospitalization thing when Steph had leukemia (age 6) & we

thought a lot of her regression was due to all the trauma she was facing

with the chemo, etc. When she was 6 (just before the leukemis dx) the Spec.

Ed. teacher thought she might be autistic as well as DS, but when we had her

tested they said, " No, she's just low-functioning Downs with autistic

tendencies. " That was 7 yrs. ago, so we're hoping to get a dx from a dev.

paed. soon.

On a personal note, will make her Confirmation on May 6. We're

looking forward to that and are very proud of her. My Dad is not well.

He's 84, lives alone & has manic depression. Right now he's very

depressed. My sister checks in on him several times a week, but it's a

concern to all of us. He's very stubborn & won't consider a supported

living arrangement of any kind. My employer at work ( I teach in a

Kindermusik studio) has been very sick - in hospital (ICU) with toxic shock

syndrome. She's now home recouperating. I've taken on 4 more classes (plus

my regular 6). Please keep my Dad & Pat (my boss) in your prayers.

Take care, everyone.

Love,

P.S. Welcome to from Alberta. I'm from Waterloo, Ont.

[Guest guest]

Hi ,

We have included you in our daily prayers and hope that your situation

improves.

Charlyne,Pete,Cait LD 20,Zeb DS-? 8

[Guest guest]

Hi ! , Prayers are on your way from me .

is very fortunate to have a parent like you . Thanks for

sharing your information on how you've been teaching your daughter

and also for what you've learned . The reason I'm writing is because

I wanted to share what a parent at a meeting told us . This does not

work for everyone but it can for some , like her son . This mom

credits her sons participation in FastForword . This research is

based on years of brain research done by a psychologist and an

otologist who specialized in cochlear implants for profoundly hearing

impaired individuals. Their research involving the way the brain

interprets, processes and uses auditory stimuli (especially in the

form of phonemes and words) has opened a new pathway to reach those

with auditory processing delays. Fast Forword gives meaning to the

aural (hearing) world around us . To be able to slow speech down to a

level that we as humans are unable to replicate , has provided a new

avenue to reach our children with these delays .

Speech is learned through imitation of spoken word . When information

is being received in a distorted way , the use of expressive speech

is confusing and not rewarding or meaningful. A larger percent of our

autistic population are visual learners, as that seems to be the more

intact processing channel . As the auditory world became more

meaningful to her son , so did the world of speech and words ---

therefore , more speech began to evovle . Phrases like " use more

words, " and tell me in a sentence " promoted more meaningful and

less " telegraphic " speech . As her son continues to make gains in

his speech production , she incoporate his strenghts to aid him in

his productions. Her son is an " above age level " reader and uses

visual strengths in sentence completion activities involving

associations , vocabulary and grammar to build his speech skills and

understanding of using speech more meaningfully . He continues to

surprise his mom daily in his ability to express himself . Here are a

few websites if interested ,

http://www.thedaviscenter.com/DCtheDC.htm

http://www.cope.dk/english/eardownl.htm

www.superduperinc.com

>or just enter Earobics

How Beautiful, to hear about your daughter, about to make her

Confirmation . Congratulations ! This is a true Blessing ! I commend

you on your support and efforts in meeting the challenges we all face

in some way with our children .

Irma , 12 DS/ASD .

- In @y..., " Gordon Burnett " <burnett@g...> wrote:

> Hi Everyone,

> here. I haven't posted in a while, but I've been

keeping up

> with reading all the posts & praying for everyone who needs prayers

(I guess

> we all do!). I just wanted to say that I identify so much with

Marisa &

> Terry. Thanks for sharing your lives with us. has

always been

> very delayed & I knew from the start that there was a wide range of

> abilities amongst children with DS, so I just figured we had a

child who was

> at the low end of the spectrum & that was that! We gave

every

> opportunity we could - Early Intervention, swimmimg lessons, Music

Therapy,

> etc. We've also been told more than once that she shouldn't have

Speech

> Therapy becoause she's not talking yet! Now that she's 13 & is

still not

> talking, we've finally found a SLP (speech & language pathologist)

who is

> teaching her methods of communication - signing, making choices,

etc. We're

> just beginning to use PECS & I'm not sure they will work for her,

but how

> will we know if we don't try? Oh, I have recently discovered

something very

> interesting. All 's life I have thought of her as an

aural learner

> rather than a visual learner. I know that most children with DS

are visual

> learners, but I thought was the exception. Well, we have

recently

> begun working with an OT who is an expert in SI. She's really

helping us a

> lot & she told me that she thinks is a visual learner!

Steph has

> very little eye contact & has a " wandering eye " which can be either

eye (she

> chooses) & gives her the appearance of being cross-eyed. Our

optometrist

> who specializes in children with special needs, says her vision is

fine &

> that she has a depth perception problem (we knew this). Anyway,

it's been a

> real revelation to me to think of Steph as being a visual learner.

She's

> always loved music so much & never was interested in the T.V. or

books much

> (other than to chew, mouth or rip them!).

> Marisa & Terry, I ,too, have never felt that I belonged to

the DS

> support groups. It has been SOOOO wonderful to find this group &

to read

> Disabilities Solutions (Thanks, Joan) & see my child in the pages!

We also

> went through the hospitalization thing when Steph had leukemia (age

6) & we

> thought a lot of her regression was due to all the trauma she was

facing

> with the chemo, etc. When she was 6 (just before the leukemis dx)

the Spec.

> Ed. teacher thought she might be autistic as well as DS, but when

we had her

> tested they said, " No, she's just low-functioning Downs with

autistic

> tendencies. " That was 7 yrs. ago, so we're hoping to get a dx from

a dev.

> paed. soon.

>

> On a personal note, will make her Confirmation on May 6.

We're

> looking forward to that and are very proud of her. My Dad is not

well.

> He's 84, lives alone & has manic depression. Right now he's very

> depressed. My sister checks in on him several times a week, but

it's a

> concern to all of us. He's very stubborn & won't consider a

supported

> living arrangement of any kind. My employer at work ( I teach in a

> Kindermusik studio) has been very sick - in hospital (ICU) with

toxic shock

> syndrome. She's now home recouperating. I've taken on 4 more

classes (plus

> my regular 6). Please keep my Dad & Pat (my boss) in your prayers.

>

> Take care, everyone.

> Love,

>

> P.S. Welcome to from Alberta. I'm from Waterloo, Ont.

[Guest guest]

My son was diagnosed when he was 16 1/2. As soon as we got the diagnosis (I had

been yelling for years that I thought he had AS, but the pyschologist would say

no), his behaviour improved a zillion precent. It meant that there was a reason

for his quirkiness and not just that he was totally weird. He does snot like

anhone talking about it in fron t of hom, but since he knows that there is a

reason, he has been a much happier boy.

He just graduated from HS last week, and will not be heading off to the

community college where he is not with children, but adults and he performs much

better in the presence of adults.

Debbi in SO CA

[Guest guest]

Debbi,

Congratulations on your son graduating from high school!.

I'm hoping my son will see a diagnosis the same way. He can be very

sensitive to some things and it can be hard to predict, still. He is

very perceptive, and for all of our reassurance and love, I know he

sees himself as 'broken'.

And like your son, he has always been better around adults. As he was

growing up I just thought it was because he was our only child, and

there were adults all around him.

SueAnn

>

> My son was diagnosed when he was 16 1/2. As soon as we got the

diagnosis (I had been yelling for years that I thought he had AS, but

the pyschologist would say no), his behaviour improved a zillion

precent. It meant that there was a reason for his quirkiness and not

just that he was totally weird. He does snot like anhone talking about

it in fron t of hom, but since he knows that there is a reason, he has

been a much happier boy.

> He just graduated from HS last week, and will not be heading off to

the community college where he is not with children, but adults and he

performs much better in the presence of adults.

> Debbi in SO CA

>