(No subject)

[Guest guest]

What New York accent??? LOL

I know isnt it great to meet people and then read their posts in their

accents? I like and Sharon's accents a lot and cant read their posts

without

a little southern drawl.

[Guest guest]

OK, I have to say it...after meeting you I can't help but read all your

posts with a " New York " accent!! lol

Re: (no subject)

You know I looked at the kids at the suaree and did make some comment on how

each of them is different from each other- each with their own set of

strengths and challenges.

Like is not athletic at all- she cant climb, ride a bike, swim, etc.

I remember when she was about 5 or 6 we used to go to a park with another

little girl her age also with DS. Well the other girl was climbing to the

top of

the monkey bars and was fearless on all the equipment. couldnt do

any

of it. I remember then feeling bad for amanda and wishing she could do

something fun at the playground.

but here we are about 10 years later and amanda still cant climb, but she

can

speak and read and use computers and has the guts to sing in a church choir

every sunday with sometimes 200 people present. She also can have fun at

the

playground by swinging on the swings sometimes for hours.

We have to look at each of our kids- know where they have been and how far

they have come- sometimes with more challenges than others, but always with

a

sense of perserverance way beyond other people. Think about all that some

of

our kids have been through medically and how they pull through and manage

their

lives in remarkable ways.

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

OK, I have to say it...after meeting you I can't help but read all your

posts with a " New York " accent!! lol

Re: (no subject)

You know I looked at the kids at the suaree and did make some comment on how

each of them is different from each other- each with their own set of

strengths and challenges.

Like is not athletic at all- she cant climb, ride a bike, swim, etc.

I remember when she was about 5 or 6 we used to go to a park with another

little girl her age also with DS. Well the other girl was climbing to the

top of

the monkey bars and was fearless on all the equipment. couldnt do

any

of it. I remember then feeling bad for amanda and wishing she could do

something fun at the playground.

but here we are about 10 years later and amanda still cant climb, but she

can

speak and read and use computers and has the guts to sing in a church choir

every sunday with sometimes 200 people present. She also can have fun at

the

playground by swinging on the swings sometimes for hours.

We have to look at each of our kids- know where they have been and how far

they have come- sometimes with more challenges than others, but always with

a

sense of perserverance way beyond other people. Think about all that some

of

our kids have been through medically and how they pull through and manage

their

lives in remarkable ways.

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

In a message dated 8/25/2005 11:28:42 P.M. Eastern Standard Time,

linman42@... writes:

What New York accent??? LOL

Your Brooklyn accent !!! Now I have a Long island accent lol!!

Loree

[Guest guest]

In a message dated 8/25/2005 11:28:42 P.M. Eastern Standard Time,

linman42@... writes:

What New York accent??? LOL

Your Brooklyn accent !!! Now I have a Long island accent lol!!

Loree

[Guest guest]

In a message dated 9/22/2005 2:12:55 P.M. Eastern Standard Time,

lowenthalrj@... writes:

Who did the evaluation? Parent or district?

Age of child?

The parent had her evaluated by a psychiatrist and she was diagnosed with

ADHD. The school did an evaluation and said she has no learning disabilities and

she is quite birght when she is not acting out. The child is 10 years old.

I think what they are going to do is wait for her to be out of control

again and then try to place her in an alternative setting. Her mother begins

police academy in January and is very worried about what is going to happen.

It

was a nightmare all last year. In the grammar school they had her seeing

the counselor. She is now in middle school

...Loree

[Guest guest]

In a message dated 9/22/2005 2:59:40 P.M. Eastern Standard Time,

drf218@... writes:

She qualified for medical assistance

do you mean like medicaid??

[Guest guest]

Who did the evaluation? Parent or district?

Age of child?

(no subject)

Okay you wise people I have a question, not for me but for my poor

neighbor.

Her daughter has been diagnosed with ADHD (although we think it is worse

than that) anyhoo, she was out of control last year about going to school.

Wouldn't get on the bus, when finally in school they had to lock the

classroom door to keep her in etc. She was TOTALLY out of control. She

had her evaluated and the district says because she is bright and has no

learning disabilities they will not give her help. She wanted a section 504

plan be drawn up for her. She has asked that the child be allowed to go

regularly to the school

psychologist or social worker to help her deal with her issues. She

cannot

afford to take her to a private therapist, her insurance doesn't cover it.

Does she have any recourse. This kid really needs help, and I do mean

help.

Loree

[Guest guest]

My friend's daughter has ADHD. She qualified for medical assistance (not because

of income) and gets services (wrap-around) through the insurance. Maybe

something to check into.

we live in PA-don't know if other states would be different.

Di

(no subject)

Okay you wise people I have a question, not for me but for my poor neighbor.

Her daughter has been diagnosed with ADHD (although we think it is worse

than that) anyhoo, she was out of control last year about going to school.

Wouldn't get on the bus, when finally in school they had to lock the

classroom

door to keep her in etc. She was TOTALLY out of control. She had her

evaluated and the district says because she is bright and has no learning

disabilities they will not give her help. She wanted a section 504 plan be

drawn up for

her. She has asked that the child be allowed to go regularly to the school

psychologist or social worker to help her deal with her issues. She cannot

afford to take her to a private therapist, her insurance doesn't cover it.

Does she have any recourse. This kid really needs help, and I do mean help.

Loree

[Guest guest]

Loree,

Schools cannot determine ADDH, only a psychologist and because most kids need

medication, a psychiatrist has to be involved. The psychologist at the

school level cannot do an assessment like that.

Some schools have agencies that work with say a hospital but a referral has

to be made to that agency. Maybe someplace like partnership with children can

help. The guidance counselors can also advise on what free or sliding scale

clincs she can get her daughter to. She also is entitled to child health plus

in NYS, I believe, in which case she can get insurance.

Hope this helps- also she can look directly into some hospitals.

[Guest guest]

In a message dated 9/22/2005 5:31:06 P.M. Eastern Daylight Time,

Loree5@... writes:

The parent had her evaluated by a psychiatrist and she was diagnosed with

ADHD. The school did an evaluation and said she has no learning disabilities

and

she is quite birght when she is not acting out.

Loree,

How about her seeing a developmental pediatrician? I would highly recommend

Dr, Pat Quinn at LIJ (718) 470-7000. I know she sees patients at town as

well as New Hyde Park. She's a great resource for cutting through BS. She's

a grandmotherly person and I know she sees kids with ADHD. I think she does

a great physical as well as behavioral evaluation.

Kathy Liam's Mom (7, DS, Asthma, Diabetes (dx 11/04))

[Guest guest]

In a message dated 9/23/2005 10:05:19 A.M. Eastern Standard Time, Mom2lfm

writes:

I would highly recommend Dr, Pat Quinn at LIJ (718) 470-7000.

I saw her with a patient a few years back when Micah was in the hospital

with pneumonia. She was in the same practice as the doctor I was seeing in

Stony Brook. I was very impressed with her but when I left my doctor, who was

not great, I didn't think it was appropriate to see her in the same practice.

I don't know if she is still there though, I will have to check it out.

Thanks.

Loree

[Guest guest]

just a sidenote, Once a psychologist or psychiatrist diagnoses ADHD a regular MD

can prescribe the medication. we were seeing a psychiatrist and she really

didn't do anything differently than the reg MD did so we stopped going there.

Di

Re: (no subject)

Loree,

Schools cannot determine ADDH, only a psychologist and because most kids need

medication, a psychiatrist has to be involved. The psychologist at the

school level cannot do an assessment like that.

Some schools have agencies that work with say a hospital but a referral has

to be made to that agency. Maybe someplace like partnership with children can

help. The guidance counselors can also advise on what free or sliding scale

clincs she can get her daughter to. She also is entitled to child health plus

in NYS, I believe, in which case she can get insurance.

Hope this helps- also she can look directly into some hospitals.

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

In a message dated 9/23/2005 6:08:38 P.M. Eastern Daylight Time,

Loree5@... writes:

I was very impressed with her but when I left my doctor, who was

not great, I didn't think it was appropriate to see her in the same

practice.

I don't know if she is still there though, I will have to check it out.

Thanks.

You're too nice! I hear her partner is cranky. I've switched partners in an

ENT practice. I didn't get any negative feedback. The first partner was

bright but had no bedside manner. The second saw Liam during an emergency and I

just decided to stick with him.

Kathy Liam's Mom (7, DS, Asthma, Diabetes (dx 11/04))

[Guest guest]

What state are you in? I would contact the board of

education. You could also call the disability support

office in your state,they may be able to arrange

screening for her, especially if someone refers her

besides a parent. Is there a teacher, counselor or

administrator who would do this? What about her

pediatrician? Anyone else who recognizes the behavior?

Is anything being documented? If not they need to

start ASAP. I would suggest every 10-15 minutes, every

day. Then send this info to the principal, sped

director etc. Testing is only part of identification.

Districts and schools can accept students on a 504 or

IEP due to behaviors even though they wouldn't

otherwise qualify.

--- Loree5@... wrote:

> Okay you wise people I have a question, not for me

> but for my poor neighbor.

> Her daughter has been diagnosed with ADHD (although

> we think it is worse

> than that) anyhoo, she was out of control last year

> about going to school.

> Wouldn't get on the bus, when finally in school they

> had to lock the classroom

> door to keep her in etc. She was TOTALLY out of

> control. She had her

> evaluated and the district says because she is

> bright and has no learning

> disabilities they will not give her help. She wanted

> a section 504 plan be drawn up for

> her. She has asked that the child be allowed to go

> regularly to the school

> psychologist or social worker to help her deal with

> her issues. She cannot

> afford to take her to a private therapist, her

> insurance doesn't cover it.

> Does she have any recourse. This kid really needs

> help, and I do mean help.

>

> Loree

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Karrie has begun to have a noticeable stoop....Shriner's Hospital has

said that her hip flexors (as well as her heel cords) are beginning to

shorten...that this can happen to a small percentage of kids with ds.

We are to do stretching exercises every night.

Sue mom to Kate 16 and Karrie 9 w/ds and other issues

-- (no subject)

Has anyone ever heard of stooping over as being a problem for kids with

Down

Syndrome. Micah had his first party in school and the teacher questioned

me that a friend of her husband has a seven year old with DS and is very

hunched over and questioned me about it. I said I never heard of this

being a

problem associated with Down's but would see if I could find out. Anyone??

Loree

[Guest guest]

That may be a sign of AAI (Atlanto Axial Instability).

Di

(no subject)

> Has anyone ever heard of stooping over as being a problem for kids with

> Down

> Syndrome. Micah had his first party in school and the teacher

> questioned

> me that a friend of her husband has a seven year old with DS and is very

> hunched over and questioned me about it. I said I never heard of this

> being a

> problem associated with Down's but would see if I could find out.

> Anyone??

>

> Loree

>

>

>

[Guest guest]

Thanks Ladies I am going to pass this information along. I mentioned AAI

but didn't think it could cause stooping but the article says it possibly

could. Thanks. Loree

That may be a sign of AAI (Atlanto Axial Instability).

Di

---

Hmmm... sounds like a trong possibility based on this article

- Becky

AAI denotes increased mobility at the articulation of the first

and second cervical vertebrae (atlantoaxial joint). The causes

of AAI are not well understood but may include abnormalities

of the ligaments that maintain the integrity of the articulation,

bony abnormalities of the cervical vertebrae, or both.

In its mildest form, AAI is asymptomatic and is diagnosed

using X-rays.....Symptomatic AAI results from subluxation

(excessive slippage) that is severe enough to injure the

spinal cord, or from dislocation at the atlantoaxial joint.

Approximately 15% of youth with DS have AAI. Almost all are

asymptomatic. Some asymptomatic individuals who have normal

X-rays initially will have abnormal X-rays later, and others

with initially abnormal X-rays will have normal follow-up

X-rays; the latter change is more common....

The neurologic manifestations of symptomatic AAI

include easy fatiguability, difficulties in walking,

abnormal gait, neck pain, limited neck mobility,

torticollis (head tilt), incoordination and clumsiness,

sensory deficits, spasticity, hyperreflexia...and

{other spinal cord} signs and symptoms. Such signs and

symptoms often remain relatively stable for months or years;

occasionally they progress, rarely even to paraplegia,

hemiplegia, quadriplegia, or death. Trauma rarely causes

the initial appearance or the progression of these symptoms.

Nearly all of the individuals who have experienced catastrophic

injury to the spinal cord had weeks to years of preceding,

less severe neurologic abnormalities....

[Guest guest]

That may be a sign of AAI (Atlanto Axial Instability).

Di

---

Hmmm... sounds like a trong possibility based on this article

- Becky

AAI denotes increased mobility at the articulation of the first and second

cervical vertebrae (atlantoaxial joint). The causes of AAI are not well

understood but may include abnormalities of the ligaments that maintain the

integrity of the articulation, bony abnormalities of the cervical vertebrae, or

both.In its mildest form, AAI is asymptomatic and is diagnosed using

X-rays.....Symptomatic AAI results from subluxation (excessive slippage) that is

severe enough to injure the spinal cord, or from dislocation at the atlantoaxial

joint.Approximately 15% of youth with DS have AAI. Almost all are asymptomatic.

Some asymptomatic individuals who have normal X-rays initially will have

abnormal X-rays later, and others with initially abnormal X-rays will have

normal follow-up X-rays; the latter change is more common....The neurologic

manifestations of symptomatic AAI include easy fatiguability, difficulties in

walking, abnormal gait, neck pain, limited neck mobility, torticollis (head

tilt), incoordination and clumsiness, sensory deficits, spasticity,

hyperreflexia...and {other spinal cord} signs and symptoms. Such signs and

symptoms often remain relatively stable for months or years; occasionally they

progress, rarely even to paraplegia, hemiplegia, quadriplegia, or death. Trauma

rarely causes the initial appearance or the progression of these symptoms.

Nearly all of the individuals who have experienced catastrophic injury to the

spinal cord had weeks to years of preceding, less severe neurologic

abnormalities....

[Guest guest]

Are we talking stooped way over or more rounded shoulders only? The rounded

shoulders can be ds related due to weak ab muscles. Does he get PT?

(no subject)

Has anyone ever heard of stooping over as being a problem for kids with

Down

Syndrome. Micah had his first party in school and the teacher questioned

me that a friend of her husband has a seven year old with DS and is very

hunched over and questioned me about it. I said I never heard of this

being a

problem associated with Down's but would see if I could find out. Anyone??

Loree

[Guest guest]

While Karrie does have AAI, her stooping is more from the hip area.

Don't even know if that would qualify as stooping!

Sue mom to Kate 16 and Karrie 9 w/ds and other issues

[Guest guest]

In a message dated 12/21/2005 7:30:11 P.M. Eastern Standard Time,

lowenthalrj@... writes:

Are we talking stooped way over or more rounded shoulders only? The rounded

shoulders can be ds related due to weak ab muscles. Does he get PT?

From the way the teacher talked it was pretty stooped over. I don't know

about the PT

[Guest guest]

Loree,

I just read a really interesting article on the positive side of inclusion.

In it, it told of several families who had filed suits to have their child

educated even at a boarding school across country. The parents were

winning the majority of these cases and it was costing the school ditsricts

in the hundreds of thousands after they got done with the battles.

And if they had just done the proper job of including them in their home

school in the first place.. Think how much money they would have saved. LOL

" Attitudes are Contageous. Is YOURS worth catching? "

[Guest guest]

My daughter Amelia, 5 with ds, is in a self contained class that does " specials "

with the typical kids. Specials are recess, library, lunch-non academic. Her

special ed teacher is so warm and kind and great with the kids. I can't say

enough about how much confidence I have in this teacher's ability to

educate-special ed or typical. Seh is quite simply a wonderful teacher. The

class has one other child with DS. Two with autism. Three I don't know why

they are in theres. She started out in our neighborhood school in a

kindergarten class for general delays with a teacher that I could not tolerate.

That teacher said Amelia needed to be in a class for MR kids. That teacher flat

out wasn't any good. Old fashioned and rigid. She was afraid to tell me that

Amelia is retarded. Really danced around the subject but finally gave me the

definition of the word retarded-like I don't know-to segue into the fact that

Amelia needed " more then she could get in the regular class. " I feel that

Amelia is mildly retarded-but her speech, while quite recently progressing, is

very delayed. She is as obstinate as a mule oftentimes. Is the fact that she

doesn't speak well and won't cooperate making her seem more retarded then she

is? I think so. My dilemma is the special ed teacher is more progressive and

just a better teacher then the regular teacher that Amelia would get if I took

her out of special ed. So I keep her in special ed wondering if I am doing her

a disservice? A few weeks ago someone in this group had an adult daughter with

ds and he seemed to be suggesting that the added help that they get in special

ed translates into better performance with regard to reading and math skills.

He also said that they don't care to hang out with their typical peers as much

as they get older and I have already seen this with Amelia. She is in a before

and after school program (all typical kids) that she has attended since the age

of two (initially as a preschool setting) and

she could care less about the other kids. She always plays on her own and this

even with the other kids trying to get her to play with them. Even after three

years some of the more persistent kids will try to get her to play with them.

Not interested. The only exception to her lack of interest in her typical

peers is a friendship she has with two children who are serious behavior

problems (by typical preschool standards.) These two kids have behaviors I'd

just as soon do without. Amelia will play with them for a limited time if they

pursue it, but doesn't appear phased if they don't. Amelia's four year old

brother is her best buddy and she'd be content to hang with no one but him. So

after this ridiculously long message I am wondering what to do. Is a self

contained class bad for a child with Down Syndrome? I just don't know what to

do. Story of my life, especially since I had kids.

Ann mother to Amelia (ds 5) and Jake.

Loree5@... wrote:

What a week. I just found out that Micah has sleep apnea and has to have

tonsils and adenoids removed. Not something I am looking forward to. Then we

went today for our sub-committee meeting to discuss Micah's placement for

next year. They are trying to talk me into putting him into the self contained

classroom half a day next year and I am adamantley opposed. He has done

well in the regular classroom there is just not enough support so of course

they

want the self contained and I want more support in the classroom. I was

told they didn't do that in this district. I said " Not my problem, he has

proven to be able to do well in the regular educational environment so you

provide

what he needs or find an inclusion kindergarten in a neighboring district.

So of course the meeting was tabled and we will take it up at a full

committee meeting. You will love this though, his OT who I have been after to

work

on his writing skills keeps saying he is not ready. Despite the fact that we

are working on it at home and beginning to have some success because I MAKE

him do his work. Her report was that he can make horizontal lines now and

circle's. I said " Well he has been doing that since before he started

school. "

SO the chairperson says " Well see he hasn't made any improvement " I said

" Really??!! " And let it hang in the air. Everyone knew what I meant,

someone is not doing their job. You should have seen the looks on everyone's

face

when it registered. I am so frustrated because I am going to have to fight

this district every year. but I will not give up. I am so tired of them

getting

away with not following the law. I woke up with a nasty head cold this

morning and feel like you know what so I am very cranky to say the least.

Thanks

for listening guys, I just needed to vent!!

Loree Mom to Micah, hear me roar!

[Guest guest]

Ann,

The placement of your daughter is a personal one that you have to make. You

need to base it on many things. A few would be: your ability to strongly

advocate, time, the support of family, the district, and, of course, your

child.

The law is already saying your daughter has the right to be educated in a

regular education classroom alongside her typical peers.

There are pros and cons for both settings and no one right or wrong.

We have opted to have our son fully included in regular classes so far in

his education. This has not be without it's battles, and there have been

drawbacks, but we certainly feel that overall it's successful for him, or we

wouldn't continue it.

One of the pros in my opinion, is the social skills aspect. Maverick is a

very social kid and loves being around people and has the skills to go into

pretty much any situation and fend for himself (to a point). His speech is

poor, but I don't feel that is because of being in a regular Ed classroom, I

think that's just the luck of the draw.

His academics.. Well, he is learning, perhaps not as fast as I would like

him to, but he does have down syndrome.. But he's learning. And the

incidental learning that he is doing is awesome. The other day a classmate,

straight A student was over. She goes to another school now. I asked her

what water was made of. (That's what Mav is working on in Science.) She

said.. H2O. And I said, yes.. But what does that mean?.. And she said.. I

don't know..and behind me Maverick said.. " 2 hydrogen and oxygen. " . I was

impressed. So was his friend. LOL.

Maverick has his " typical " friends at church and school and then he has his

sp needs friends all over the place. The best of both worlds. This is

what we feel is right for Maverick.

It's NOT right for all kids. Some kids do better in different settings,

either fully in the self contained, or in cross categorical classrooms, or

just pulled out for some resource support or homeschooled or whatever.

There are so many options to choose from. The mistake is in not getting to

know what the options are and what would work best for your child and going

for it. A bigger mistake is accepting what the school says without question

They my be right, but they aren't the parent. Make sure YOU feel it's

right for your child.

Ok.. Off my soapbox and back to changing diapers.

" Attitudes are Contageous. Is YOURS worth catching? "