Irma

[Guest guest]

In a message dated 3/2/2004 5:40:39 PM Eastern Standard Time,

ICANFIELD@... writes:

> How is Zeb? Sorry to hear this. What is the latest on this?

>

Hi Irma,

Zeb stands a lot at school. He is still complaining but not as bad. I think

it will just take time to heal. I was going to take him to the ped but she said

I am doing what she would have prescribed. She felt there was no sense to put

him through x-rays which isn't fun for me either. He is stiff in the morning

until he gets moving some. I don't think he will flop on his butt with the

boys again,LOL. Thanks for asking.

Charlyne

Mom to Zeb 11 DS/OCD

[Guest guest]

Irma I was wondering when you go to OH does the doctor give you a written

report after the evaluation? Louise

[Guest guest]

In a message dated 3/23/2004 11:53:57 AM Eastern Standard Time,

ICANFIELD@... writes:

> On the communication device I did ask for it once upon a time and they

> told me that did not qualify for it as they did not think he would know

> how to use it.

Hi Irma,

Yes, I did have lines but not as long as I wanted. It was a cold weekend. My

feet may never be the same,LOL. I did have three other people with me. It was

so cold that I still haven't been able to clean the trailer. We are expecting

warmer weather this weekend figures. Thanks for asking.

I am very behind with my own paperwork. All my team meetings and observations

are coming up for PPT prep not only for Zeb but all my other kids. I have a

meeting first thing in the am for another child. I had a meeting schedule with

this child's sped teacher last week and the teacher needed an advocate for her

child. We never did have the meeting but discussed her issues. I certainly

wasn't prepared for a sped teacher in tears. It doesn't matter what background

you have when you are a parent. I have been trying to read the posts but

limited in time to respond. I am attending a roundtable discussion tomorrow

evening

at the state dept of ed on inclusive ed. A consultant that has been teaching

a course to many of the teachers around the state will discuss the outcomes. I

am always learning.

My response to 's request for the communication device to the school,

you can't do what your not taught. It seems like that's a familiar response

from the districts. I have heard it a few times before. I think it's a good idea

to see the voc program before you agree to anything. Thanks for the upate.

Charlyne

Mom to Zeb 11 DS/OCD

[Guest guest]

Isn't that weird. My sister in Sacramento had 2 boys that didn't drive.

One got his license at 24. The other still doesn't ahve one. And my

step son didn't get his license ( he lived near San Francisco). He

moved in with us about a year and a half ago (at almost 19) - and i took

him immediately to dmv. I just can't imagine. I was at the dmv on my

16th birthday.

Irma

Hi, Everyone....Irma...I *think* Gareth got a certificate when

he got his

First Communion. I wouldn't be able to find it, though, to

prove it!!! He did

get a candle and cross. There aren't sponsors for FC, but there

is one for

Confirmation. I had asked in the past about Gareth receiving

Confirmation and

was told that is not a 'required' sacrament. For that reason, I

have not pursued

it. Gareth does fine going up to Communion, now. He use to

growl and grumble

while SLOWLY walking up to the alter and would be upset because

everyone was

sooooooooo slow. Now that he has done it for a long time, he

understands that

the people in front of him have to go 'first.'

<<What is up to these days? Is he driving and working? I

bet lots of

mail from various Universities and colleges. Rick has been

receiving a lot of

them and received his first just the other day. Hmm, am I

ready now to

conquer College with ? Oh Boy! Hard to believe they grown

so fast. Is

and Gareth attending the same school this year?>> Yes,

is

driving and working part-time. I forced him to get his license

a month ago because

it was too hard having to go and get him for work at 9:00pm and

leave Gareth

home alone sleeping in bed. I could always picture the headlines

" DOWN

SYNDROME CHILD DIES IN FIRE AFTER BEING LEFT HOME ALONE " . I

swear I have the only

teenager that could have cared less about getting his license!!!

Now I can't

keep him home!!! Him and Gareth are in the same school but

rarely see each

other. G's in 9th and 's in 11th. As for the

colleges.....mannnnnnnnn,I never

knew there were so many colleges and universities out there!!!

is set

on going to PSU so he just ignores them. He gets (on average)

3-4 a day!!!He

laughs when the colleges have less kids than his high school!!!

You are right,

though, they have both grown up so fast.

Take

care, Everyone.

Margaret

Irma,15,DS/ASD

[Guest guest]

In a message dated 3/28/2004 10:25:33 PM Eastern Standard Time,

ICANFIELD@... writes:

> Stay posted if an assistive device is used.

Hi Irma,

What is if for? I would insist on it with sugar. It not too late for

anything. needs to be able to communicate. How is he going to function in

the

community? Keep us posted on the PPT outcome.

Charlyne

Mom to Zeb 11 DS/OCD

[Guest guest]

Why's that Irma? My curiosity is peaked! LOL

Gail :-)

In a message dated 4/2/2004 2:34:15 PM Eastern Standard Time,

ICANFIELD@... writes:

This coming Sunday we return to the time zone change, Spring forward

and I'm noticing that seems to do better during this season.

[Guest guest]

Irma, I love the statements in your email --

" A good program can be consistent, constant and positive without

forcing a child. "

One of the guiding principles is " they believe every learner has the

potential to develop skills beyond their current level and should be

free of behaviors and activities that cause injury, pain or limit

opportunities for full community involvement " .

I looked up the site and find they will be having a workshop in Rosemont, IL

end of July so I emailed them for info on it. Thanks. Louise

[Guest guest]

I received a reply from Illinois Curing Autism Through Research and Education

www.icareinfo.org. Then I realized it was three days for this one on

Communication Skills and would cost $325, I am not so sure I will go. At least

I

wouldn't have the hotel cost as it is nearby. Will think about it. Is AU

specialist for Autism specialist? Hope they did get something out of the

conference

even if they missed some of it.

I don't recall hearing how 's First Communion went, maybe I am having a

Senior Moment and just forget. Sure you posted it but I either missed it or

forgot. Sure it went beautifully.

Next Wed/Thur is IL ARC annual conference so I will be going there. It is

also nearby which is nice.

Will let you know how does with his appts next week. Louise

[Guest guest]

Hi Louise,

I hope to read that 's test returns with good news. Oh, this statement I was

repeating was from Karyn and I agree a very commendable one. Then the remaining

I had added from Dr. Carbone's clinic. It was one of the best workshop ever. The

only thing that makes me so upset is that finally someone from my sons school

district had attended a workshop and it was an AU specialist. This worshop I

paid on my own and was very fortunate on a reasonable priced hotel. The AU

specialist and about 2 others whom I did not know had also attended and you can

imagine of course their expenses were paid by the school district. Here is where

my blood started to boil on what I had seen the first day by after lunch they

could not stay awake during the workshop and so they left to their room which

was on the same building the workshop was being held at. It was a nice hotel

which was probably about $179.00 & up a night. The workshop was $ 250.00. (Mine

due to some connection was $59.00 a night.) My food expense was close to $60.00

for 3 days (lunch and dinner). Theres no telling.

By the second day they had actually hung around the entire day. Yesterday by the

first mid-morning break I saw they were tallying up their expenses and then took

off for the rest of the workshop. What a slap on the face for somone to be label

as a AU Specialist. All I know I just better get support from her when I need

something from her.

I did learn alot and was very impressed and happy to attend, especially when I

had returned home yesterday by evening and walking in with running up to

me to give me a great big hug and telling me " hi " with great eye contact. I did

cry as what wealth of information and knowing what the AU staff had done, they

have not walked in my shoes but what I'm doing on my own was worth every penny

that I'm on the right track with this type of behavior intervention as he is

starting to vocalize more, showing great motor imitation, being receptive, etc.

Results and progress are coming along for him and you can imagine the entire

family in " awe " !

I would love to hear your input when you attend. I had a blast learning.

Thanks!

Irma,15,DS/ASD

Re: Irma

Irma, I love the statements in your email --

" A good program can be consistent, constant and positive without

forcing a child. "

One of the guiding principles is " they believe every learner has the

potential to develop skills beyond their current level and should be

free of behaviors and activities that cause injury, pain or limit

opportunities for full community involvement " .

I looked up the site and find they will be having a workshop in Rosemont, IL

end of July so I emailed them for info on it. Thanks. Louise

[Guest guest]

Hi Louise,

Just got back from dropping my hubby off at the airport, back to work as he

fullfilled his daddy duty. I'm so glad it worked out that he was able to bid off

during the days I was gone. He actually scored an A+, impressive.

Ouch! That is pretty pricey for that workshop. I see it includes Sundberg and

Partington manual. Still it seems like it keeps tallying up like extra cost for

a manual and also for a Parent/Professional Network dinner. Hmm, maybe I could

share some info. I know it will not be the same thing as attending but it'll

kinda of give you an idea of what Dr. Carbone discusses. I'll via snail mail the

info. AU does stand for autism. Me too, I do hope the AU staff did learn

something. I wonder if Barbara Doyle will attend to something like this? If so

then she could pass info.

has not done his First Holy Commuion yet. Had too much going on with my

other son Rick, this evening is his Confirmation. I'm kinda of leaning towards

Mother's Day for and is practicing taking the host very well.

Hope to hear a good turn out next Wed/Thur's ARC annual conference.

I'm keeping my fingers crossed for 's appts. next week.

Irma,15,ds/asd

Re: Irma

I received a reply from Illinois Curing Autism Through Research and Education

www.icareinfo.org. Then I realized it was three days for this one on

Communication Skills and would cost $325, I am not so sure I will go. At

least I

wouldn't have the hotel cost as it is nearby. Will think about it. Is AU

specialist for Autism specialist? Hope they did get something out of the

conference

even if they missed some of it.

I don't recall hearing how 's First Communion went, maybe I am having a

Senior Moment and just forget. Sure you posted it but I either missed it or

forgot. Sure it went beautifully.

Next Wed/Thur is IL ARC annual conference so I will be going there. It is

also nearby which is nice.

Will let you know how does with his appts next week. Louise

[Guest guest]

In a message dated 5/4/2004 12:38:22 PM Eastern Daylight Time,

ICANFIELD@... writes:

> How and when did this happen on the added label?

>

Hi Irma,

Yes, he does have the ASD but not officially on record yet. I explained it

already in a post to Margaret. I am not labeling at school simply because he has

just about every accommodation that he needs. I do believe in Zeb's situation

that an additional label will only limit expectation from the school staff. I

am not fighting or need additional services from the school. Zeb's situation

is a very different situation. I wasn't looking for a label just help with

meds. I am very surprised that Dr. Capone wasn't able to see the ASD. We are

seeing the psychiatrist again very soon so I want him to tell me again and make

certain that he does have ASD. It doesn't matter to me right now but in the

future it may make a difference with the services if he ever needs something.

Zeb

does have a LD in addition to the DS, phonological and orthographic processing

disorder. I am more concerned with this dx more than any. It has taking me

five years of arguing with the district that something was wrong. It was not

just having a cognitive disability that was impairing his educational gains. Zeb

finally has a program that is working for him. I have been very busy too. I

have been trying to read the post but have missed some. I am in PPT time. I

advocate for four other children besides Zeb. I spend many hours at schools in

team meetings and PPT's not to mention all the prep time. The parents of my

other

students are disabled and cannot advocate themselves. Zeb is the toughest

besides when it's your child it's all together different as you know. Good to

hear that you are making progress with programing at 's school. Keep up

the

good work.

Charlyne

Mom to Zeb 11 DS/OCD/ASD?