Re: Teacher with questions

[Guest guest]

on 11/5/01 7:25 PM, speedturtle76@... at speedturtle76@...

wrote:

> I am a special education teacher of a student diagnosed with CHARGE

> and autistic tendancies. I have been researching the syndrome and I

> have not come across many students who are as developmentally delayed

> as my student. He is thought to have a severe hearing loss and he is

> blind in one eye, but uses his vision amazingly well. He is 7 and he

> needs hand-over-hand assistance for most tasks. He uses self

> stimulatory behaviors frequently (spitting, flapping hands, and

> tapping his head). I suspect that he is affected more by autism then

> by the syndrome, although the parents are currently arguing that all

> of his symptoms are part of the syndrome. I was just wondering if

> anyone has a child who is labeled with moderate mental retardation,

> or with autism too. I typically try to set a diagnosis aside and

> deal with the child but his parents keep coming up with reasons why

> their child can't do certain things (they state " well a child with

> CHARGE... " )

>

> He is very sensory involved and takes little interested of others.

> At this time his only medical problems are ear infections. He often

> flops himself on the ground when walking and he would lie on the

> ground all day if we let him. I have never met a child who needed

> more sensory stimulation. The spitting behaviors are horrendous.

> The parents claim that spitting is part of the syndrome however I

> have yet to find that listed in the information on CHARGE syndrome.

>

> I am very interested in hearing from others.- thank you carrie

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

We may just be fortunate, but our little girl is about

as far from autistic as I can imagine. My husband and

his best friend have quite a lot of experience with

autistic children, and I've been reassured by both of

them that she has no tendancies in that direction. For

example, she is very engaging and sociable and always

has been. The only thing that once concerned my

husband in that area is that she enjoys rocking her

head rhythmically from side to side and has done so

since she was just a few months old. But she seems to

use that more as a way to either put herself to sleep

or to keep herself awake. Not too unnatural in small

children. Don't know if that helps, but it's my

experience anyway.

--- speedturtle76@... wrote:

> I am a special education teacher of a student

> diagnosed with CHARGE

> and autistic tendancies. I have been researching

> the syndrome and I

> have not come across many students who are as

> developmentally delayed

> as my student. He is thought to have a severe

> hearing loss and he is

> blind in one eye, but uses his vision amazingly

> well. He is 7 and he

> needs hand-over-hand assistance for most tasks. He

> uses self

> stimulatory behaviors frequently (spitting, flapping

> hands, and

> tapping his head). I suspect that he is affected

> more by autism then

> by the syndrome, although the parents are currently

> arguing that all

> of his symptoms are part of the syndrome. I was

> just wondering if

> anyone has a child who is labeled with moderate

> mental retardation,

> or with autism too. I typically try to set a

> diagnosis aside and

> deal with the child but his parents keep coming up

> with reasons why

> their child can't do certain things (they state

> " well a child with

> CHARGE... " )

>

> He is very sensory involved and takes little

> interested of others.

> At this time his only medical problems are ear

> infections. He often

> flops himself on the ground when walking and he

> would lie on the

> ground all day if we let him. I have never met a

> child who needed

> more sensory stimulation. The spitting behaviors

> are horrendous.

> The parents claim that spitting is part of the

> syndrome however I

> have yet to find that listed in the information on

> CHARGE syndrome.

>

> I am very interested in hearing from others.- thank

> you carrie

>

>

__________________________________________________

[Guest guest]

,

PS Mark does not spit but I know of another CHARGE'r who does

this also.

[Guest guest]

-

Our 3-yr-old daughter, Aubrie, is similar to yours. She is very

sociable, engaging, lovable... She is communicative (both with sign and

speech), instigates conversations, tells stories, engages in pretend play,

etc.

I was struck by your description of your daughter's rocking. Aubrie has

always rocked back and forth to comfort herself, when bored, to fall asleep,

etc. She still does it more often than I'd like, but the frequency is

reducing somewhat. I've been assured by an OT who is expert in sensory

issues that she will outgrow it by early elementary. I sure hope so. It's

the only " weird " behavior that Aubrie has.

She does one other thing that seems autistic-like to me. Perhaps you or

some others on the list can give me some insight into this. Sometimes she

says things in a " rainman-ish " way. I know that's not PC- but I don't know

the appropriate term. She usually speaks very appropriately. She can talk in

very complex sentences, but her articulation is extremely poor so she is

most often unintelligable. However, sometimes she'll say sort of strange

things.

For example, last night I tucked her into bed with her favorite music

on. The musician is Gregg . As I left the room, she was telling

herself, " Gregg . Yep, Gregg singing. " Now, is that just a

typical 3-yr-old kind of thing or is that out of the ordinary?

She'll also rock and sing to herself a word or phrase repeatedly. Most

often I notice this in the car. It's usually something that we've just

said. Like " Mcs, Mcs, etc " . If she's not singing, she's

humming. Her " music " has become the soundtrack of our lives.

Michele

mom to Aubrie (almost 4) CHaRgE and (10)

Re: Teacher with questions

> We may just be fortunate, but our little girl is about

> as far from autistic as I can imagine. My husband and

> his best friend have quite a lot of experience with

> autistic children, and I've been reassured by both of

> them that she has no tendancies in that direction. For

> example, she is very engaging and sociable and always

> has been. The only thing that once concerned my

> husband in that area is that she enjoys rocking her

> head rhythmically from side to side and has done so

> since she was just a few months old. But she seems to

> use that more as a way to either put herself to sleep

> or to keep herself awake. Not too unnatural in small

> children. Don't know if that helps, but it's my

> experience anyway.

>

>

>

>

> --- speedturtle76@... wrote:

> > I am a special education teacher of a student

> > diagnosed with CHARGE

> > and autistic tendancies. I have been researching

> > the syndrome and I

> > have not come across many students who are as

> > developmentally delayed

> > as my student. He is thought to have a severe

> > hearing loss and he is

> > blind in one eye, but uses his vision amazingly

> > well. He is 7 and he

> > needs hand-over-hand assistance for most tasks. He

> > uses self

> > stimulatory behaviors frequently (spitting, flapping

> > hands, and

> > tapping his head). I suspect that he is affected

> > more by autism then

> > by the syndrome, although the parents are currently

> > arguing that all

> > of his symptoms are part of the syndrome. I was

> > just wondering if

> > anyone has a child who is labeled with moderate

> > mental retardation,

> > or with autism too. I typically try to set a

> > diagnosis aside and

> > deal with the child but his parents keep coming up

> > with reasons why

> > their child can't do certain things (they state

> > " well a child with

> > CHARGE... " )

> >

> > He is very sensory involved and takes little

> > interested of others.

> > At this time his only medical problems are ear

> > infections. He often

> > flops himself on the ground when walking and he

> > would lie on the

> > ground all day if we let him. I have never met a

> > child who needed

> > more sensory stimulation. The spitting behaviors

> > are horrendous.

> > The parents claim that spitting is part of the

> > syndrome however I

> > have yet to find that listed in the information on

> > CHARGE syndrome.

> >

> > I am very interested in hearing from others.- thank

> > you carrie

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Hi ,

I don't know about the speech, since is just

getting started with that--and she chatters ad nauseum

at the top of her lungs. But it seems that my two

older daughters, who don't have CHARGE or any other

condition we know of, did that sort of thing. The

words my second daughter always latched onto and made

a song out of were, of course, the four-letter variety

we'd let slip. I guess if it were me I wouldn't worry

about it unless is goes on for quite awhile.

About the rocking, though, is Aubrie sight impaired?

We've had therapists and doctors speculate that it has

to do with 's partial blindness. One even likened

it to the way Stevie Wonder rocks back and forth. BUt

it really does seem like she only does it when it's

nap time and bed time. Just curious.

Also, since I'm relatively new I'm trying to figure

out who everyone is on the list. Where do you all

live?

mom to Tessa (7), Emma (5) and (2-CHARGE)

Littleton, CO

--- Westmaas wrote:

> -

> Our 3-yr-old daughter, Aubrie, is similar to

> yours. She is very

> sociable, engaging, lovable... She is communicative

> (both with sign and

> speech), instigates conversations, tells stories,

> engages in pretend play,

> etc.

> I was struck by your description of your

> daughter's rocking. Aubrie has

> always rocked back and forth to comfort herself,

> when bored, to fall asleep,

> etc. She still does it more often than I'd like,

> but the frequency is

> reducing somewhat. I've been assured by an OT who

> is expert in sensory

> issues that she will outgrow it by early elementary.

> I sure hope so. It's

> the only " weird " behavior that Aubrie has.

> She does one other thing that seems

> autistic-like to me. Perhaps you or

> some others on the list can give me some insight

> into this. Sometimes she

> says things in a " rainman-ish " way. I know that's

> not PC- but I don't know

> the appropriate term. She usually speaks very

> appropriately. She can talk in

> very complex sentences, but her articulation is

> extremely poor so she is

> most often unintelligable. However, sometimes

> she'll say sort of strange

> things.

> For example, last night I tucked her into bed

> with her favorite music

> on. The musician is Gregg . As I left the

> room, she was telling

> herself, " Gregg . Yep, Gregg

> singing. " Now, is that just a

> typical 3-yr-old kind of thing or is that out of the

> ordinary?

> She'll also rock and sing to herself a word or

> phrase repeatedly. Most

> often I notice this in the car. It's usually

> something that we've just

> said. Like " Mcs, Mcs, etc " . If she's

> not singing, she's

> humming. Her " music " has become the soundtrack of

> our lives.

>

> Michele

> mom to Aubrie (almost 4) CHaRgE and (10)

>

> Re: Teacher with questions

>

>

> > We may just be fortunate, but our little girl is

> about

> > as far from autistic as I can imagine. My husband

> and

> > his best friend have quite a lot of experience

> with

> > autistic children, and I've been reassured by both

> of

> > them that she has no tendancies in that direction.

> For

> > example, she is very engaging and sociable and

> always

> > has been. The only thing that once concerned my

> > husband in that area is that she enjoys rocking

> her

> > head rhythmically from side to side and has done

> so

> > since she was just a few months old. But she seems

> to

> > use that more as a way to either put herself to

> sleep

> > or to keep herself awake. Not too unnatural in

> small

> > children. Don't know if that helps, but it's my

> > experience anyway.

> >

> >

> >

> >

> > --- speedturtle76@... wrote:

> > > I am a special education teacher of a student

> > > diagnosed with CHARGE

> > > and autistic tendancies. I have been

> researching

> > > the syndrome and I

> > > have not come across many students who are as

> > > developmentally delayed

> > > as my student. He is thought to have a severe

> > > hearing loss and he is

> > > blind in one eye, but uses his vision amazingly

> > > well. He is 7 and he

> > > needs hand-over-hand assistance for most tasks.

> He

> > > uses self

> > > stimulatory behaviors frequently (spitting,

> flapping

> > > hands, and

> > > tapping his head). I suspect that he is

> affected

> > > more by autism then

> > > by the syndrome, although the parents are

> currently

> > > arguing that all

> > > of his symptoms are part of the syndrome. I was

> > > just wondering if

> > > anyone has a child who is labeled with moderate

> > > mental retardation,

> > > or with autism too. I typically try to set a

> > > diagnosis aside and

> > > deal with the child but his parents keep coming

> up

> > > with reasons why

> > > their child can't do certain things (they state

> > > " well a child with

> > > CHARGE... " )

> > >

> > > He is very sensory involved and takes little

> > > interested of others.

> > > At this time his only medical problems are ear

> > > infections. He often

> > > flops himself on the ground when walking and he

> > > would lie on the

> > > ground all day if we let him. I have never met

> a

> > > child who needed

> > > more sensory stimulation. The spitting

> behaviors

> > > are horrendous.

> > > The parents claim that spitting is part of the

> > > syndrome however I

> > > have yet to find that listed in the information

> on

> > > CHARGE syndrome.

> > >

> > > I am very interested in hearing from others.-

> thank

> > > you carrie

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

,

We are in central IL. Aubrie has severely limited vision in one eye but

near-normal in the other. She has some balance and sensory issues, but nothing

severe. We have also had therapists suggest that Aubrie's rocking was related

to her vision impairment. I think it's likely related to the whole of

everything she's dealing with. I just hope she loses the behavior soon. In

school, she doesn't do it out of boredom, but she rocks when singing or counting

methodically. It's just her natural way of movement.

In fact, rocking was how she first became mobile. She rocked hard enough to

make herself move and then figured out how to maximize the movement. She was

quite a sight! But it worked to get her where she wanted to go without having

to deal with gravity and balance issues.

Michele

[Guest guest]

,

We used to say that was " dancing " when she was

tiny, because she would rock her head to the rhythm of

music. I've often wondered if she won't be a musician

because she loves music so much, and she literally

throws herself into it. Now that she's older and can

actually dance a little she still swings her head

around as she does it. Interesting.

--- Westmaas wrote:

> ,

> We are in central IL. Aubrie has severely limited

> vision in one eye but near-normal in the other. She

> has some balance and sensory issues, but nothing

> severe. We have also had therapists suggest that

> Aubrie's rocking was related to her vision

> impairment. I think it's likely related to the

> whole of everything she's dealing with. I just hope

> she loses the behavior soon. In school, she doesn't

> do it out of boredom, but she rocks when singing or

> counting methodically. It's just her natural way of

> movement.

>

> In fact, rocking was how she first became mobile.

> She rocked hard enough to make herself move and then

> figured out how to maximize the movement. She was

> quite a sight! But it worked to get her where she

> wanted to go without having to deal with gravity and

> balance issues.

>

> Michele

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Thankyou for all of your suggestions. I work in a school for children who have

special needs, most of my students have autism and are very severe. So the

little boy I have with CHARGE is not very different from the others- the only

difference lies in the parents. There is nearly a 2:1 student to

teacher/assistant ratio. We are a very sensory filled classroom. In fact we

have a sensory room in the school called the snoozeloon that we use 2 or more

hours a week. He receives occupational and speech therapy. I am looking into

vision therapy and he receives hearing therapy. His parents have yet to pick up

hearing aids for him that are ready, I am about ready to go get them myself! He

doesn't wear his glasses because his parents feel if he doesn't like them then

he shouldn't have to wear them. He has no speech but he does make PECS

exchanges perfectly when it comes to food! I am trained in PECS, His signs are

horrendous- no one could understand it if you did not know him.

You did give me some great ideas. I was somewhat relieved to hear that my

student is not the only one with those behaviors. I still believe that he is

autistic because routine is very important, he has a few obsessive components,

and he tends to have very similar characteristics to my other autistic students.

I do use the MR label lightly. I don't feel there is any accurate manner for

testing students with severe communication and sensory problems.

Thank you again- carrie, special education teacher

---------------------------------

[Guest guest]

-

Aubrie has always danced (in a sitting or laying down position). Since

early infancy, she has always responded to music. When she was very tiny, I

remember that she used to do a " ballet " with her fingers. She is so

flexible that she could move her fingers in ways that I can't and her OT

would prefer that she couldn't -- but it was so graceful to watch.

Michele

Re: re: teacher with questions

> ,

>

> We used to say that was " dancing " when she was

> tiny, because she would rock her head to the rhythm of

> music. I've often wondered if she won't be a musician

> because she loves music so much, and she literally

> throws herself into it. Now that she's older and can

> actually dance a little she still swings her head

> around as she does it. Interesting.

>

>

>

>

> --- Westmaas wrote:

> > ,

> > We are in central IL. Aubrie has severely limited

> > vision in one eye but near-normal in the other. She

> > has some balance and sensory issues, but nothing

> > severe. We have also had therapists suggest that

> > Aubrie's rocking was related to her vision

> > impairment. I think it's likely related to the

> > whole of everything she's dealing with. I just hope

> > she loses the behavior soon. In school, she doesn't

> > do it out of boredom, but she rocks when singing or

> > counting methodically. It's just her natural way of

> > movement.

> >

> > In fact, rocking was how she first became mobile.

> > She rocked hard enough to make herself move and then

> > figured out how to maximize the movement. She was

> > quite a sight! But it worked to get her where she

> > wanted to go without having to deal with gravity and

> > balance issues.

> >

> > Michele

> >

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

In a message dated 11/7/01 10:13:13 PM Central Standard Time,

speedturtle76@... writes:

> I still believe that he is autistic because routine is very important, he

> has a few obsessive components, and he tends to have very similar

> characteristics to my other autistic students.

,

Just another opinion here...but my son Mark is also VERY

routine!!!! And obsessive to an extreme but I do not consider him autistic.

He is in a room with a hearing impaired autistic boy and Mark has cognitive

abilities beyond the boy I am mentioning. It is very unfortunate that you

don't have a good deaf-blind consultant like we do here in Michigan who could

shed some light on these behaviors. They are NORMAL for CHARGE children there

is also a paper by Dr Kim Blake which states the same facts. If you could get

him out of his shell you might see a whole different child (though that could

take a miracle)