Re: Introducing myself

[Guest guest]

good luck Summer.....nice to have you aboard.....welcome welcome welcome !!!!!

There is so much to learn on this list...I like it very much......

[Guest guest]

Hi Terri,

I am fairly new to the group too. I have 5 children two with ASD. My 8 year old

daughter is also smiley and I am often told " pleasant " . Well of course we all

know pleasant is not progress. We recently moved to Colorado from Arizona and

our new school had to retest our daughter in all areas. Boy were they surprised

at her low scores. Again they said she is so pleasant we had no idea the

severity of her deficits. If your school could test your daughter they would

find out for themselves why she needs assistance. If you have to, find a good

developmental pediatrician and have her tested yourself. I am sure the Dr. who

originally diagnosed her would back you up. Even people in the special education

field seem to not know how to deal with people who are high functioning and also

kids who are really good " fakers " like my daughter. We had our big meeting last

week and I know it is not fun. Hopefully the more parents who are assertive out

there and also educate our educators about this disorder the better off all our

kids will be. Good luck!

Introducing myself

Hello all, I have been reading the most recent posts but haven't had

the heart to speak as of yet. My name is Terri, I have three

children my son is 15 and is a joy, I have a daughter who is 12 and

is driving me crazy as she should be. My youngest is going to be 11

in another 2 months and she has PDD-NOS. I have a big meeting

tomorrow at her school and as usual it is s nightmare. I don't even

have the strength to tell the story, but I will make it short. The

school doesn't agree with her diagnosis, (except they do)

confused... so am I. Her last years teacher told me that she has

not one friend and she is very isolated, the other children avoid

her etc. All the typical ASD stuff. Then at the team meeting this

same teacher said I never said that! We had a behaviorist come to

observe her in class at the school's expense, he watched her during

a very structured activity and basically said she looks fine to me.

We met in May with our lawyer and the " Team " (of fools) to discuss

summer services. You see my daughter has significant social issues

and we found a great pragmatic social skills camp. Our town doesn't

have anything like this so we wanted them to help financially...no

go. The camp cost almost $4,000. and that doesn't include travel.

We felt it was worth cashing in our meager retirement fund to send

her. This camp lasted 7 weeks which took us right up until there

were only 10 days before the start of the new school year. We

figured then school would start and all these wonderful social

programs our lawyer got the school to agree to would start at

school. Well, school started Aug. 29 we are here on Oct. 9 and they

have done nothing so far. Once again I am hearing " she looks fine

to us " . They actually tell me, well she is always smiling when we

see her. Well, then certainly if she is smiling she must not be

autistic after all..,.silly me! We are meeting tomorrow to try to

get the town to pay for an after school pragmatic social group as

well as begin all the ervices that they are now in non compliance

with. I am exhausted, I am broke and I am so very dissappointed in

the entire school system. My lawyer tells me that we would not win

a hearing to have an outside placement as her ASD is not " severe "

enough. It is severe enough to make her a social outcast but

apparently that isn't " enough " . She tells me that we would have to

pay for outside evaluators to come to the school and create reports

to the effect that she cannot get FAPE in her current placement.

The part of the story that kills me most is that I used to work in

this town's special education system and I know things your average

parent at a meeting doesn't know. I know for instance that if an

evaluator is coming in the stage is set. The situation manipulated

etc. I also know that the reason that teacher recanted her

assessment of my daughter is because she was told to. It is the

bottom line at all costs. I was asked to leave my postion for

reasons realating to the fact that I couldn't play that game. I

sided with a parent at a meetin becasue she was so clearly right.

After that my career with this town was over.

So, I am basically trying to get through this day and try not to

lunge over the table tomorrow and throttle the fools. Thanks all

for giving me this forum to vent. ANy meeting suggestions or

strategies would be helpful otherwise I will post again tomorrow and

let you know what happens.

Terri

[Guest guest]

You know what is funny, my daughter was diagnosed by an outside team at Tufts

New England as well as a behavioral pediatrician. She was also tested in school

and tested low. They said they don't agree with the evaluation and her tests

scores are low because she doesn't test well. They have an answer for

everything, meanwhile time is ticking away and my poor daughter is fallen

through the cracks before my eyes.

Introducing myself

Hello all, I have been reading the most recent posts but haven't had

the heart to speak as of yet. My name is Terri, I have three

children my son is 15 and is a joy, I have a daughter who is 12 and

is driving me crazy as she should be. My youngest is going to be 11

in another 2 months and she has PDD-NOS. I have a big meeting

tomorrow at her school and as usual it is s nightmare. I don't even

have the strength to tell the story, but I will make it short. The

school doesn't agree with her diagnosis, (except they do)

confused... so am I. Her last years teacher told me that she has

not one friend and she is very isolated, the other children avoid

her etc. All the typical ASD stuff. Then at the team meeting this

same teacher said I never said that! We had a behaviorist come to

observe her in class at the school's expense, he watched her during

a very structured activity and basically said she looks fine to me.

We met in May with our lawyer and the " Team " (of fools) to discuss

summer services. You see my daughter has significant social issues

and we found a great pragmatic social skills camp. Our town doesn't

have anything like this so we wanted them to help financially...no

go. The camp cost almost $4,000. and that doesn't include travel.

We felt it was worth cashing in our meager retirement fund to send

her. This camp lasted 7 weeks which took us right up until there

were only 10 days before the start of the new school year. We

figured then school would start and all these wonderful social

programs our lawyer got the school to agree to would start at

school. Well, school started Aug. 29 we are here on Oct. 9 and they

have done nothing so far. Once again I am hearing " she looks fine

to us " . They actually tell me, well she is always smiling when we

see her. Well, then certainly if she is smiling she must not be

autistic after all..,.silly me! We are meeting tomorrow to try to

get the town to pay for an after school pragmatic social group as

well as begin all the ervices that they are now in non compliance

with. I am exhausted, I am broke and I am so very dissappointed in

the entire school system. My lawyer tells me that we would not win

a hearing to have an outside placement as her ASD is not " severe "

enough. It is severe enough to make her a social outcast but

apparently that isn't " enough " . She tells me that we would have to

pay for outside evaluators to come to the school and create reports

to the effect that she cannot get FAPE in her current placement.

The part of the story that kills me most is that I used to work in

this town's special education system and I know things your average

parent at a meeting doesn't know. I know for instance that if an

evaluator is coming in the stage is set. The situation manipulated

etc. I also know that the reason that teacher recanted her

assessment of my daughter is because she was told to. It is the

bottom line at all costs. I was asked to leave my postion for

reasons realating to the fact that I couldn't play that game. I

sided with a parent at a meetin becasue she was so clearly right.

After that my career with this town was over.

So, I am basically trying to get through this day and try not to

lunge over the table tomorrow and throttle the fools. Thanks all

for giving me this forum to vent. ANy meeting suggestions or

strategies would be helpful otherwise I will post again tomorrow and

let you know what happens.

Terri

[Guest guest]

For about $150 you can get a pen that has a tape recorder. I don't

know about your state, my state's law is that only 1 party has to be

aware. As long as I know we're recording, it's legal.

Will post moer later, great to meet you! I'm Debi, mom of 9,7,4 yr old

girls, all making me nuts!

<g>

Debi

[Guest guest]

hey, what state is that?

Re: Introducing myself

For about $150 you can get a pen that has a tape recorder. I don't

know about your state, my state's law is that only 1 party has to be

aware. As long as I know we're recording, it's legal.

Will post moer later, great to meet you! I'm Debi, mom of 9,7,4 yr old

girls, all making me nuts!

<g>

Debi

[Guest guest]

Debi,

I just looked it up and Massachusetts is one of only 12 states that forbids

recording unless all parties are aware. bummer. Although it wouldn't be legal

for me to tape things, it would still help me catch them in one of their many

lies. The only problem with that is that once I do it and use it once it will

become ineffective because they will watch what they say around me. It is at

these informal meetings that I gather info that is later at official meetings

recanted. As if being the parent of an autistic child isn't hard enough we have

to lay these games. It is really sad. I have to admit I am not doing to well

today. I am just trying to get through the hours until bed so tomorrow can be

overwith.

Terri

Re: Introducing myself

For about $150 you can get a pen that has a tape recorder. I don't

know about your state, my state's law is that only 1 party has to be

aware. As long as I know we're recording, it's legal.

Will post moer later, great to meet you! I'm Debi, mom of 9,7,4 yr old

girls, all making me nuts!

<g>

Debi

[Guest guest]

TN

>

> hey, what state is that?

>

[Guest guest]

Terri, I know what you mean. I can't go into any greater detail but I

can relate.

One friend has a son in 7th grade. He's still scoring at a 3rd grade

reading level. For 3 years she's been writing letters, going to

meetings, and just paid $$$$ to attend a special reading center this

summer, where he made some progress for the first time in years. All

that and the system has the nerve to sit there and say, " he's making

progress. " It's such a cat & mouse game. They, many times, will lie

like a dog. We're left to have to gather all the evidence. Like you

say, if you use the evidence they won't offer anything else, which is

the only way we can get the evidence. But I firmly believe that God

provides the info we need, we just have to look hard enough. A friend

is involved in a lawsuit and you would not believe the info that falls

into our laps at the most unsuspecting moments. Are you officially

tape recording the meetings? Maybe you need to bring in a video

recorder, too. I don't know the legalities of it, but might help.

Do you know other families in your area that are in a similar

situation? Sometimes there is power in numbers. I've been to IEP

meetings when 7-8 family/friends showed up to present their side.

Also, any other employees who left? Maybe get them to go on the record

about how they do? Can you file official state ed complaints? Write

your state & federal reps for help? Protest? Sometimes a good stink

cna get things moving. Maybe a reminder that them lying could get them

into federal court. After all, these are official meetings. If she's

scoring below the levels required for services, they can't say her

smiling trumps the testing. Well, they can say it, but it would be

really,really stupid of them.

I hear Delaware has great services. Any chance of moving?

Debi

[Guest guest]

Welcome

Just thinking bout having a teenager in the house wears me out. Fatigue is one

of everyone's biggest complaints with the hep. Also staying on track or the

memory thing. I think I have learned to use it as an excuse to talk myself out

of doing things so am trying to work on my mental attitude. I do take some

supplements which seem to help with the fatigue and putting a couple thoughts

together. Do you now what shape your liver is in? Well welcome again and hope

it is sunny where you are at and you are enjoying your weekend.

Debbie

[Guest guest]

Your Grandson with ADAH has what is called a service dog and NO ONE can deny him

access or kick you out of your home. If you want more details (it costs next to

nothing) email me in private.

>

> I am a single grandparent living with HepC and raising a grandson who is 15

years old. I have had this disease for quite some time. my guess would be at

least 25 years. I have taken treatment for this about 10 years ago with no

positive results.

> My frustration is being able to accomplish things that I used to do. I have

difficulty with keeping the momentum going for starting a project at home and

being able to finish it in a timely manner.

> I have no problems at work because it is based on structure and time limits

and deadlines.

> My 30 year old mobile home in which I have lived in for the past 16 years is

falling apart around me dispite my attempts to do the repairs. In about a month

and a half I will be leaving all this behind in search of a home that I can

afford that will allow my grandson to keep his dog. You see, the mobile home

court I live in doesn't allow dogs and I had gotten the dog for my grandson to

help with his ADHD.

> Thank you for allowing me to vent.

> clberta512004

>

[Guest guest]

> Welcome

> Just thinking bout having a teenager in the house wears me out. Fatigue is

one of everyone's biggest complaints with the hep. Also staying on track or the

memory thing. I think I have learned to use it as an excuse to talk myself out

of doing things so am trying to work on my mental attitude. I do take some

supplements which seem to help with the fatigue and putting a couple thoughts

together. Do you now what shape your liver is in? Well welcome again and hope

it is sunny where you are at and you are enjoying your weekend.

> Debbie

>

Yes the teenager and his dog both can wear me out; especially the dog I got for

him. I did not realize that Jack Terriers have ADHD too. " Shelby " is as

impulsive as her teen aged owner! Talk about hyper! I Do have chirosis as well

but my doc has me get CT's every 6 months to the day. I started to take fish oil

capsules about a week ago and I am hoping that will help the brain. Thank you

for the response I hope to meet some friends with the same condition so I can

get through this journey I am on.