Re: SCOLIOSIS-a Moms observation

July 10, 2007

,

Adolescence is a common timeframe for scoliosis developing in girls

without all of the CHARGE issues as I am sure you know. There is a

primary reflex called the Galant reflex (trunk incurvation) that when

the mid back is touched on that side and then the muscles pull towards

the touch I believe. The trigger point happens to be right where a

bra strap goes - a coincidence? Of course this would only matter in

someone whose primary and postural reflexes were not fully integrated,

perhaps a person who was/is impacted by physiological stress, a weak

vestibular system leading to low and poorly modulated muscle tone, and

uncontrolled differentiation of muscle movements. I did not include

this in my requested reply about scoliosis - just too much to cover at

once. But if therapy does not address the vestibular system, I am

concerned that the person will still not have the ability to regulate

tone, no matter how strong the muscles get.

In 's case, I wonder if the brace is hitting at that spot? Just a thought.

Stretch reflexes (Table 1)

Exaggeration of the stretch reflex causes deformity or

abnormal position in a joint.

1) Trunk

-Gallant reflex

Increase of this reflex causes a trunk deformity. The trunk is

extended into scoliosis, with exaggerated Galant reflex. This

exaggerated gallant reflex is caused by the hypertonicity of the

longissimus thoracis, iliocostalis and spinalis.

http://hb3.seikyou.ne.jp/home/t-matsu2/E.p1.ch3.1.html

Spinal Galant

The Spinal Galant reflex also emerges in utero and should inhibit

between three and nine months of age. This reflex

facilitates movement in the womb and allows hip flexibility. " …it may

take an active role in the birth process.

Contractions of the vaginal wall stimulate the lumbar region and cause

small rotational movements of the hip on one

side…. In this way, the baby can help to work its way down the birth

canal " (Goddard, p. 16). It is believed that this

reflex also works to help get the elimination system up and going.

Connections have been found between children with

a retained Spinal Galant reflex and auditory difficulties as well as

urinary and digestive disorders such as irritable

bowel syndrome (Goddard, p. 16). If this reflex is retained the

following behaviors are usually observed: constant

fidgetiness, inability to sit still, difficulty with concentration,

poor bladder control and bedwetting past the age of

five, tactile hypersensitivity, auditory processing difficulties,

scoliosis of the spine, short term memory, dislike for

clothes to be fitted at the waist, posture and gait problems (hip

rotation to one side when walking on the side which

retains the reflex). It may also interfere with the full development

of the later amphibian and segmental rolling

reflexes, affecting fluency and mobility in physical activities or

sports " (Goddard, p. 17).

http://www.annashousellc.com/whatisndd.html

Primitive and Postural reflexes - the Theory

At birth a baby has no control over voluntary movement. Reflexes

provide stereotyped reactions to certain stimuli in the early weeks

but are soon transformed into more advanced motor skills.

Early reflexes also provide training for many aspects of later functioning.

As the infant begins to grow and mature during the first six months of

life, so the Central Nervous System also begins to mature. Higher,

more sophisticated regions of the brain begin to take over the

functions of primitive reflexes and postural reflexes take their

place. As this occurs early survival patterns are inhibited or

controlled to allow more mature patterns of response (postural

reflexes) to develop in their place.

The postural reflexes are regulated by higher centres in the brain and

support control of balance, posture and movement in a gravity based

environment.

As postural reflexes replace primitive reflexes the infant begins to

gain control of the body and body movements. (A child who has cerebral

palsy never makes the transition from primitive to postural reflexes,

and so movements remain random and uncontrolled).

Some children fail to gain this control fully in the first six months

of life and continue to grow up in a reflexive " no man's land " , where

some of the primitive reflexes remain present and the postural

reflexes do not develop fully. These children continually experience

difficulty with control of movement affecting: corordination, balance,

fine motor skills and motor develeopment and learning such as reading,

writing, PE etc.

Retained primitive reflexes can also affect a child's sensory

perceptions, causing him to be hypersensitive in some areas and

hyposensitive in others.

If both sensory input and motor response are impaired,

conceptualisation of certain movements can be affected.

http://www.inpp.org.uk/postural.htm

>

> The Charge manual has pointed out that scoliosis is often a concern for

> Chargers.

> And now we have research pointing to a direct link to CHD7 to add the

> exclamation point.

>

> I just want to say that in our case, has always been followed by

> ortho, of course.

> She has always had pt/ot/mobility. She had hippotherapy and swimming.

> Right up to age 20, when we discovered the chiari malformation, she was

> very

> active in sports.

>

> Yet, pictures of her at 16 and 17, compared to those at 20 and 21, are

> shocking.

>

> Specifically between ages 18 and 20, there was an acceleration of the

> progression of the

> scoliosis that we had no reason to suspect or anticipate. In fact, even

> though at 16

> she was at a 23 dgree lower curvature, all appeared to be holding steady,

> and all

> therapies seemed to be sufficient to sustain that. Consequently, it wasn't

> a front burner

> issue.

>

> So, that changed in a 2 year period, progressing to 43 degrees, and with

> forward rotation.

> Di has 2 extenuating circumstances: right leg shorter, and chiari, which

> also involves scoliosis,

> so her experience may not be " normal " to Charge. Then again, also is

> progressing despite active

> therapies.

>

> Besides hoping that medical finds some biochemical help, I'm suggesting

> that

> it is an

> area requiring continued high diligence, as scoliosis can stay stable for a

> long period of time,

> and then become very active, out of the blue, with no obvious probable

> cause.

> (many underlying probable causes-most of which all Chargers are subject

> to.)

>

> I'm thinking of all our 10 year olds, who are stable right now. Could there

> be a direct

> link to puberty? That seemed to be our time-frame.

> But regardless, 16 years of combined slow progression including long

> stretches of stability,

> changed rapidly and signicantly.

> Correction isn't so simple. Hopefully, increased measures for prevention

> will be successful.

> Just maintain long term diligence. ;-)

>

> in Ma.

>

> ************************************** See what's free at

> http://www.aol.com.

>

July 10, 2007

,

You have something there.. Our Endo keeps a close eye on 's very slight

scoliosis

due to him being on GHT and testosterone.. she says that both meds and going ino

puberty

is reason to keep an eye on it, as that can make things worse real fast. She

checks him

every three months.

Casey

________________________________________________________________________________\

____

Need a vacation? Get great deals

to amazing places on Yahoo! Travel.

http://travel.yahoo.com/

July 10, 2007

Kim:

WOW! What a posting! This sounds more like my Ken than :

" Constant fidgetiness, inability to sit still, difficulty with

concentration, poor bladder control and bedwetting past the age of

five, tactile hypersensitivity, auditory processing difficulties,

scoliosis of the spine, short term memory, dislike for

clothes to be fitted at the waist, posture and gait problems (hip

rotation to one side when walking on the side which

retains the reflex). It may also interfere with the full development

of the later amphibian and segmental rolling

reflexes, affecting fluency and mobility in physical activities or

sports " (Goddard, p. 17). "

Fits Ken perfectly in all but the auditory processing, and scoliosis - I

think. ( " Your left, Ken...your left...no, your OTHER left... " ;

processing?!?!)

I may have to dig a bit deeper!

Friends in CHARGE,

Marilyn Ogan

Mom of (14, CHARGE+, JRA)

Mom of Ken (17, Aspergers)

Wife of Rick

oganm@...

Re: SCOLIOSIS-a Moms observation

,

....

Spinal Galant

The Spinal Galant reflex also emerges in utero and should inhibit

between three and nine months of age. This reflex

facilitates movement in the womb and allows hip flexibility. " .it may

take an active role in the birth process.

Contractions of the vaginal wall stimulate the lumbar region and cause

small rotational movements of the hip on one

side.. In this way, the baby can help to work its way down the birth

canal " (Goddard, p. 16). It is believed that this

reflex also works to help get the elimination system up and going.

Connections have been found between children with

a retained Spinal Galant reflex and auditory difficulties as well as

urinary and digestive disorders such as irritable

bowel syndrome (Goddard, p. 16). If this reflex is retained the

following behaviors are usually observed: constant

fidgetiness, inability to sit still, difficulty with concentration,

poor bladder control and bedwetting past the age of

five, tactile hypersensitivity, auditory processing difficulties,

scoliosis of the spine, short term memory, dislike for

clothes to be fitted at the waist, posture and gait problems (hip

rotation to one side when walking on the side which

retains the reflex). It may also interfere with the full development

of the later amphibian and segmental rolling

reflexes, affecting fluency and mobility in physical activities or

sports " (Goddard, p. 17).

http://www.annashousellc.com/whatisndd.html

......

July 10, 2007

Marilyn,

For us, parenting our supposedly typical child who clearly had

neruodevelpmental issues, (weak vestibular and poor binocular

functions primarily) was the most challenging. He was expected to be

like everyone else and he just couldn't. Your other right, yes I know

about that.

Kim

>

> Kim:

> WOW! What a posting! This sounds more like my Ken than :

> " Constant fidgetiness, inability to sit still, difficulty with

> concentration, poor bladder control and bedwetting past the age of

> five, tactile hypersensitivity, auditory processing difficulties,

> scoliosis of the spine, short term memory, dislike for

> clothes to be fitted at the waist, posture and gait problems (hip

> rotation to one side when walking on the side which

> retains the reflex). It may also interfere with the full development

> of the later amphibian and segmental rolling

> reflexes, affecting fluency and mobility in physical activities or

> sports " (Goddard, p. 17). "

>

> Fits Ken perfectly in all but the auditory processing, and scoliosis - I

> think. ( " Your left, Ken...your left...no, your OTHER left... " ;

> processing?!?!)

>

> I may have to dig a bit deeper!

> Friends in CHARGE,

> Marilyn Ogan

> Mom of (14, CHARGE+, JRA)

> Mom of Ken (17, Aspergers)

> Wife of Rick

> oganm@...

>

> Re: SCOLIOSIS-a Moms observation

>

> ,

> ...

> Spinal Galant

> The Spinal Galant reflex also emerges in utero and should inhibit

> between three and nine months of age. This reflex

> facilitates movement in the womb and allows hip flexibility. " .it may

> take an active role in the birth process.

> Contractions of the vaginal wall stimulate the lumbar region and cause

> small rotational movements of the hip on one

> side.. In this way, the baby can help to work its way down the birth

> canal " (Goddard, p. 16). It is believed that this

> reflex also works to help get the elimination system up and going.

> Connections have been found between children with

> a retained Spinal Galant reflex and auditory difficulties as well as

> urinary and digestive disorders such as irritable

> bowel syndrome (Goddard, p. 16). If this reflex is retained the

> following behaviors are usually observed: constant

> fidgetiness, inability to sit still, difficulty with concentration,

> poor bladder control and bedwetting past the age of

> five, tactile hypersensitivity, auditory processing difficulties,

> scoliosis of the spine, short term memory, dislike for

> clothes to be fitted at the waist, posture and gait problems (hip

> rotation to one side when walking on the side which

> retains the reflex). It may also interfere with the full development

> of the later amphibian and segmental rolling

> reflexes, affecting fluency and mobility in physical activities or

> sports " (Goddard, p. 17).

> http://www.annashousellc.com/whatisndd.html

> .....

>

--

Kim

Certified HANDLE Screener and Intern

Mom to Dylan 11 CHaRGE, Kayla 16, Tyler 19

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

July 11, 2007

hmmmmmmmmmmm me to slight scoliosis

>

> Marilyn,

>

> For us, parenting our supposedly typical child who clearly had

> neruodevelpmental issues, (weak vestibular and poor binocular

> functions primarily) was the most challenging. He was expected to be

> like everyone else and he just couldn't. Your other right, yes I know

> about that.

>

> Kim

>

> >

> > Kim:

> > WOW! What a posting! This sounds more like my Ken than :

> > " Constant fidgetiness, inability to sit still, difficulty with

> > concentration, poor bladder control and bedwetting past the age of

> > five, tactile hypersensitivity, auditory processing difficulties,

> > scoliosis of the spine, short term memory, dislike for

> > clothes to be fitted at the waist, posture and gait problems (hip

> > rotation to one side when walking on the side which

> > retains the reflex). It may also interfere with the full development

> > of the later amphibian and segmental rolling

> > reflexes, affecting fluency and mobility in physical activities or

> > sports " (Goddard, p. 17). "

> >

> > Fits Ken perfectly in all but the auditory processing, and scoliosis - I

> > think. ( " Your left, Ken...your left...no, your OTHER left... " ;

> > processing?!?!)

> >

> > I may have to dig a bit deeper!

> > Friends in CHARGE,

> > Marilyn Ogan

> > Mom of (14, CHARGE+, JRA)

> > Mom of Ken (17, Aspergers)

> > Wife of Rick

> > oganm@...

> >

> > Re: SCOLIOSIS-a Moms observation

> >

> > ,

> > ...

> > Spinal Galant

> > The Spinal Galant reflex also emerges in utero and should inhibit

> > between three and nine months of age. This reflex

> > facilitates movement in the womb and allows hip flexibility. " .it may

> > take an active role in the birth process.

> > Contractions of the vaginal wall stimulate the lumbar region and cause

> > small rotational movements of the hip on one

> > side.. In this way, the baby can help to work its way down the birth

> > canal " (Goddard, p. 16). It is believed that this

> > reflex also works to help get the elimination system up and going.

> > Connections have been found between children with

> > a retained Spinal Galant reflex and auditory difficulties as well as

> > urinary and digestive disorders such as irritable

> > bowel syndrome (Goddard, p. 16). If this reflex is retained the

> > following behaviors are usually observed: constant

> > fidgetiness, inability to sit still, difficulty with concentration,

> > poor bladder control and bedwetting past the age of

> > five, tactile hypersensitivity, auditory processing difficulties,

> > scoliosis of the spine, short term memory, dislike for

> > clothes to be fitted at the waist, posture and gait problems (hip

> > rotation to one side when walking on the side which

> > retains the reflex). It may also interfere with the full development

> > of the later amphibian and segmental rolling

> > reflexes, affecting fluency and mobility in physical activities or

> > sports " (Goddard, p. 17).

> > http://www.annashousellc.com/whatisndd.html

> > .....

> >

>

> --

> Kim

> Certified HANDLE Screener and Intern

> Mom to Dylan 11 CHaRGE, Kayla 16, Tyler 19

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

>

--

stand up and speak up!!!!!!! and dont let the world hold you back just go

for it

July 11, 2007

Kim:

We too have had a difficult time with our " typical " child. Rick and I have

often stated that we really thought the struggles would be with .

The bigger struggles have turned out to be Ken's. He was 9th grade before

we found out about the Aspergers. And that only because we moved and were

in a new school district. We'd had an ADD dx and worked with that in the

old district in 5th and 6th grade - not successfully, as they didn't believe

he had any problems. Moved in 7th grade, still working with the ADD dx and

meds that didn't do anything. Then at the beginning of 8th grade, school

did more testing. Found nothing they thought, but wanted to test for

emotional handicap. By then it was the end of the year, held his case

conference and was told the testing showed no EH; but they wanted to check

for the Aspergers. Got the dx from school psych the start of 9th grade. We

have had many adaptations/modifications but he still just doesn't quite

function on all levels like he needs to to succeed in school. And

motivating him outside school is a huge issue as well.

Ken would have like to do sports - and we think it would have helped al lot

in social as well as physical aspects, but he just can't get the

coordination down. Even with lots of " practice " he is just plain awkward.

He tried football in an elementary program; had to have a coach show him how

to do the line stance, and it was very uncomfortable and awkward for him.

He doesn't wear anything at his waist level. Can't stand " icky " hands

(hated food around his mouth as a baby, too), has always covered or plugggd

his ears at moderately loud noises (ones you or I might wince, but not cover

our ears), walks with a stiff-legged gait (hip related issue?), and we know

he has the short term memory problems (from the Aspergers testing).

My understanding is that many individuals with Aspergers were typically

mis-diagnosed earlier in life with the ADD or ADHD. I wish we'd had a

better understanding or proactive school district in elementary school.

Being 3 years old when was born and having his home life so chaotic

with those CHARGE early days didn't help. The school just always attributed

his problems to having a sibling with special needs.

Anyway, why is it that everything that should be typical never quite?

Friends in CHARGE,

Marilyn Ogan

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Kim Lauger

Sent: Wednesday, July 11, 2007 12:01 AM

To: CHARGE

Subject: Re: SCOLIOSIS-a Moms observation

Marilyn,

For us, parenting our supposedly typical child who clearly had

neruodevelpmental issues, (weak vestibular and poor binocular

functions primarily) was the most challenging. He was expected to be

like everyone else and he just couldn't. Your other right, yes I know

about that.

Kim

July 19, 2007

Marilyn,

Most people assume it is Dylan that has driven me to become a HANDLE

provider, but truly it is Tyler. He is the one who has been most

misunderstood throughout his school years, and who had so many

capabilities, but still so many struggles. Helping others understand

such kids, so that experts stop placing the blame on them or their

families, and start helping support function is my driving passion.

There is still lots of work for me to understand Dylan and to help

others understand him, but it has never been as challenging as helping

Tyler through it all.

The good news for us is that Tyler - now out of the school system - is

thriving and happy. Living in his own apartment since last September,

happy with his job, paying his bills on time, etc. He still has his

issues, but he has more control in determining which situations he

thrives best in and setting his life up accordingly - like we all do.

We just got back from a family vacation to Colorado where my niece got

married. I was so proud of how Tyler took his work experience in

banquet setup for Hilton and pulled that wedding and reception

together!

See you next week.

>

> Kim:

>

> We too have had a difficult time with our " typical " child. Rick and I have

> often stated that we really thought the struggles would be with .

> The bigger struggles have turned out to be Ken's. He was 9th grade before

> we found out about the Aspergers. And that only because we moved and were

> in a new school district. We'd had an ADD dx and worked with that in the

> old district in 5th and 6th grade - not successfully, as they didn't

> believe

> he had any problems. Moved in 7th grade, still working with the ADD dx and

> meds that didn't do anything. Then at the beginning of 8th grade, school

> did more testing. Found nothing they thought, but wanted to test for

> emotional handicap. By then it was the end of the year, held his case

> conference and was told the testing showed no EH; but they wanted to check

> for the Aspergers. Got the dx from school psych the start of 9th grade. We

> have had many adaptations/modifications but he still just doesn't quite

> function on all levels like he needs to to succeed in school. And

> motivating him outside school is a huge issue as well.

>

> Ken would have like to do sports - and we think it would have helped al lot

> in social as well as physical aspects, but he just can't get the

> coordination down. Even with lots of " practice " he is just plain awkward.

> He tried football in an elementary program; had to have a coach show him

> how

> to do the line stance, and it was very uncomfortable and awkward for him.

> He doesn't wear anything at his waist level. Can't stand " icky " hands

> (hated food around his mouth as a baby, too), has always covered or plugggd

> his ears at moderately loud noises (ones you or I might wince, but not

> cover

> our ears), walks with a stiff-legged gait (hip related issue?), and we know

> he has the short term memory problems (from the Aspergers testing).

>

> My understanding is that many individuals with Aspergers were typically

> mis-diagnosed earlier in life with the ADD or ADHD. I wish we'd had a

> better understanding or proactive school district in elementary school.

> Being 3 years old when was born and having his home life so chaotic

> with those CHARGE early days didn't help. The school just always attributed

> his problems to having a sibling with special needs.

>

> Anyway, why is it that everything that should be typical never quite?

>

> Friends in CHARGE,

>

> Marilyn Ogan

>

> _____

>

> From: CHARGE [mailto:CHARGE ] On Behalf Of

> Kim Lauger

> Sent: Wednesday, July 11, 2007 12:01 AM

> To: CHARGE

> Subject: Re: SCOLIOSIS-a Moms observation

>

> Marilyn,

>

> For us, parenting our supposedly typical child who clearly had

> neruodevelpmental issues, (weak vestibular and poor binocular

> functions primarily) was the most challenging. He was expected to be

> like everyone else and he just couldn't. Your other right, yes I know

> about that.

>

> Kim

>

July 20, 2007

kim maybe they both did in their own ways

>

> Marilyn,

>

> Most people assume it is Dylan that has driven me to become a HANDLE

> provider, but truly it is Tyler. He is the one who has been most

> misunderstood throughout his school years, and who had so many

> capabilities, but still so many struggles. Helping others understand

> such kids, so that experts stop placing the blame on them or their

> families, and start helping support function is my driving passion.

> There is still lots of work for me to understand Dylan and to help

> others understand him, but it has never been as challenging as helping

> Tyler through it all.

>

> The good news for us is that Tyler - now out of the school system - is

> thriving and happy. Living in his own apartment since last September,

> happy with his job, paying his bills on time, etc. He still has his

> issues, but he has more control in determining which situations he

> thrives best in and setting his life up accordingly - like we all do.

> We just got back from a family vacation to Colorado where my niece got

> married. I was so proud of how Tyler took his work experience in

> banquet setup for Hilton and pulled that wedding and reception

> together!

>

> See you next week.

>

> >

> > Kim:

> >

> > We too have had a difficult time with our " typical " child. Rick and I

> have

> > often stated that we really thought the struggles would be with .

> > The bigger struggles have turned out to be Ken's. He was 9th grade

> before

> > we found out about the Aspergers. And that only because we moved and

> were

> > in a new school district. We'd had an ADD dx and worked with that in the

> > old district in 5th and 6th grade - not successfully, as they didn't

> > believe

> > he had any problems. Moved in 7th grade, still working with the ADD dx

> and

> > meds that didn't do anything. Then at the beginning of 8th grade, school

> > did more testing. Found nothing they thought, but wanted to test for

> > emotional handicap. By then it was the end of the year, held his case

> > conference and was told the testing showed no EH; but they wanted to

> check

> > for the Aspergers. Got the dx from school psych the start of 9th grade.

> We

> > have had many adaptations/modifications but he still just doesn't quite

> > function on all levels like he needs to to succeed in school. And

> > motivating him outside school is a huge issue as well.

> >

> > Ken would have like to do sports - and we think it would have helped al

> lot

> > in social as well as physical aspects, but he just can't get the

> > coordination down. Even with lots of " practice " he is just plain

> awkward.

> > He tried football in an elementary program; had to have a coach show him

> > how

> > to do the line stance, and it was very uncomfortable and awkward for

> him.

> > He doesn't wear anything at his waist level. Can't stand " icky " hands

> > (hated food around his mouth as a baby, too), has always covered or

> plugggd

> > his ears at moderately loud noises (ones you or I might wince, but not

> > cover

> > our ears), walks with a stiff-legged gait (hip related issue?), and we

> know

> > he has the short term memory problems (from the Aspergers testing).

> >

> > My understanding is that many individuals with Aspergers were typically

> > mis-diagnosed earlier in life with the ADD or ADHD. I wish we'd had a

> > better understanding or proactive school district in elementary school.

> > Being 3 years old when was born and having his home life so

> chaotic

> > with those CHARGE early days didn't help. The school just always

> attributed

> > his problems to having a sibling with special needs.

> >

> > Anyway, why is it that everything that should be typical never quite?

> >

> > Friends in CHARGE,

> >

> > Marilyn Ogan

> >

> > _____

> >

> > From: CHARGE [mailto:

> CHARGE ] On Behalf Of

> > Kim Lauger

> > Sent: Wednesday, July 11, 2007 12:01 AM

> > To: CHARGE

> > Subject: Re: SCOLIOSIS-a Moms observation

> >

> > Marilyn,

> >

> > For us, parenting our supposedly typical child who clearly had

> > neruodevelpmental issues, (weak vestibular and poor binocular

> > functions primarily) was the most challenging. He was expected to be

> > like everyone else and he just couldn't. Your other right, yes I know

> > about that.

> >

> > Kim

> >

July 20, 2007

Yes Ellen,

You are right. I should have said people assumed it was " only " Dylan.

Kim

>

> kim maybe they both did in their own ways

>

> >

> > Marilyn,

> >

> > Most people assume it is Dylan that has driven me to become a HANDLE

> > provider, but truly it is Tyler. He is the one who has been most

> > misunderstood throughout his school years, and who had so many

> > capabilities, but still so many struggles. Helping others understand

> > such kids, so that experts stop placing the blame on them or their

> > families, and start helping support function is my driving passion.

> > There is still lots of work for me to understand Dylan and to help

> > others understand him, but it has never been as challenging as helping

> > Tyler through it all.

> >

> > The good news for us is that Tyler - now out of the school system - is

> > thriving and happy. Living in his own apartment since last September,

> > happy with his job, paying his bills on time, etc. He still has his

> > issues, but he has more control in determining which situations he

> > thrives best in and setting his life up accordingly - like we all do.

> > We just got back from a family vacation to Colorado where my niece got

> > married. I was so proud of how Tyler took his work experience in

> > banquet setup for Hilton and pulled that wedding and reception

> > together!

> >

> > See you next week.

> >

> > On 7/11/07, Rick Ogan oganr@... >

> wrote:

> > >

> > > Kim:

> > >

> > > We too have had a difficult time with our " typical " child. Rick and I

> > have

> > > often stated that we really thought the struggles would be with

> .

> > > The bigger struggles have turned out to be Ken's. He was 9th grade

> > before

> > > we found out about the Aspergers. And that only because we moved and

> > were

> > > in a new school district. We'd had an ADD dx and worked with that in

> the

> > > old district in 5th and 6th grade - not successfully, as they didn't

> > > believe

> > > he had any problems. Moved in 7th grade, still working with the ADD dx

> > and

> > > meds that didn't do anything. Then at the beginning of 8th grade,

> school

> > > did more testing. Found nothing they thought, but wanted to test for

> > > emotional handicap. By then it was the end of the year, held his case

> > > conference and was told the testing showed no EH; but they wanted to

> > check

> > > for the Aspergers. Got the dx from school psych the start of 9th grade.

> > We

> > > have had many adaptations/modifications but he still just doesn't quite

> > > function on all levels like he needs to to succeed in school. And

> > > motivating him outside school is a huge issue as well.

> > >

> > > Ken would have like to do sports - and we think it would have helped al

> > lot

> > > in social as well as physical aspects, but he just can't get the

> > > coordination down. Even with lots of " practice " he is just plain

> > awkward.

> > > He tried football in an elementary program; had to have a coach show

> him

> > > how

> > > to do the line stance, and it was very uncomfortable and awkward for

> > him.

> > > He doesn't wear anything at his waist level. Can't stand " icky " hands

> > > (hated food around his mouth as a baby, too), has always covered or

> > plugggd

> > > his ears at moderately loud noises (ones you or I might wince, but not

> > > cover

> > > our ears), walks with a stiff-legged gait (hip related issue?), and we

> > know

> > > he has the short term memory problems (from the Aspergers testing).

> > >

> > > My understanding is that many individuals with Aspergers were typically

> > > mis-diagnosed earlier in life with the ADD or ADHD. I wish we'd had a

> > > better understanding or proactive school district in elementary school.

> > > Being 3 years old when was born and having his home life so

> > chaotic

> > > with those CHARGE early days didn't help. The school just always

> > attributed

> > > his problems to having a sibling with special needs.

> > >

> > > Anyway, why is it that everything that should be typical never quite?

> > >

> > > Friends in CHARGE,

> > >

> > > Marilyn Ogan

> > >

> > > _____

> > >

> > > From: CHARGE [mailto:

> > CHARGE ] On Behalf Of

> > > Kim Lauger

> > > Sent: Wednesday, July 11, 2007 12:01 AM

> > > To: CHARGE

> > > Subject: Re: SCOLIOSIS-a Moms observation

> > >

> > > Marilyn,

> > >

> > > For us, parenting our supposedly typical child who clearly had

> > > neruodevelpmental issues, (weak vestibular and poor binocular

> > > functions primarily) was the most challenging. He was expected to be

> > > like everyone else and he just couldn't. Your other right, yes I know

> > > about that.

> > >

> > > Kim

> > >

July 20, 2007