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your son

Rose,

Thank you for sharing your story with me. I am sorry that you have had to go

thru this. I know the world is learning from your son--what you wrote will

remind so many to think carefully about giving our at risk children booster

shots and making their situations worse. It sounds like your son was teetering

on autism as a toddler. i wonder what pulled him out of it?? Could it have

been just the milk? Were you good about milk avoidance all these years or did

you notice that later as he had ear infections etc you were back to milk

products at that time? Something must have been going on with his immune system

huh?.. Boy, very difficult! Take care of yourself and I hope you find some

answers for your sweet boy. Much love, (P.S. It was hard to loose the

son I had at 18-20 months--he has returned in many ways to that boy with GFCF

diet, therapy etc, but to look at his one year pictures tears at my heart.

Cant imagine if he was older.... Sounds like you have an incredible and

creative child on your hands though:) )

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  • 1 month later...

Gloria, My son is 12 years old and found low platelet count back in march

while having a CBC for something else. Blood test were repeated and we were

then referred to a Hemotologist. Bone marrow biopsy was done to rule out

Leukemia. He was found to have an enlarged spleen at that time also. Dr.s

here in Flint could find nothing but the enlarged spleen so my primary Dr and

the Hemotologist wanted to have his spleen removed. I wanted an opinion from

a Ped. surgeon. The Ped. surgeon told me not to let anyone take Collin's

spleen out, and to go to the U to be diagnosed. The U diagnosed him to have

liver problems and a biopsy was done in May. His liver is badly Cirrhosed,

and we saw the transplant team in June and he is on the list now. He is

doing ok, on pred. 20 mg, and mp6. We go back to clinic next week. He is in

school and active, he has to limit his activities, of course because of the

spleen, but overall he hasn't had any of the varicies, acitites, etc, yet,

Thank god.

I am a single mom with 4 children, work full time and sometimes it gets

rough. My husband does what he can, we separated 9 months ago, and he was

helping me financially until in april he was put in intensive care for 2

weeks, Dr.s say a virus attacked his heart muscle and his heart is weakened

now and he is permanently disabled, can no longer work. They are talking

about sending him to the U to get on Heart transplant list So the finances

have gone to H___ too. Oh don't U just love stress. But i take one day at a

time and see what it brings.

Tell me about yourself Gloria. Hope all is well with U and Yours. Irene

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Irene,

I'm so sorry you are having such a hard time. Isn't it amazing how one day

everything seems fine and overnight everything in your life changes. My son

is also 12 and has AIH and kidney problems. My daughter had platelet

problems when she was 6 months. They also first diagnosed her as leukemia.

Then they found out she had ITP. Her platelets were so low they had to hand

count them. After experimenting with prednisone, platelet infusions, with

nothing working, the doctors also wanted to remove her spleen. I wouldn't

let them. At that time she was only 18 months old. I'm thankful to say that

after battling ITP for 3 years, she is now a healthy 14 year old.

I can't imagine having both your son and possibly your husband on

transplant lists. I honestly don't know how you do it. How old are your

other children? When your husband became disabled, was he allowed to keep

him medical insurance for him and the kids? Is your employer understanding

about you taking time off to take your son to the doctor and hospital? I

understand about financial woes. During the time my son was being diagnosed

with AIH, my husband lost his job and we had not only no income for 5

months, but no medical insurance. The medical insurance we had before he

lost his job was lousy. We are now in the process of losing our house

because we just couldn't keep up with it. We tried to make payment

arrangements with the hospital, but they said they waited long enough. The

last time I took my son there, they tried to deny him medical treatment.

Since they are a private hospital, they were allowed to do that. It finally

came down to paying to make sure Tommy got proper medical care or keeping

the house. I pray that your situation improves and doesn't come down to

choices like that.

Thinking of you,

Debbie (Tommy's Mom)

> [Original Message]

> From: <IRoss103@...>

> < >

> Date: 8/31/01 6:33:57 AM

> Subject: Re: [ ] your son

>

> Gloria, My son is 12 years old and found low platelet count back

> in march

> while having a CBC for something else. Blood test were repeated and

> we were

> then referred to a Hemotologist. Bone marrow biopsy was done to

> rule out

> Leukemia. He was found to have an enlarged spleen at that time also.

> Dr.s

> here in Flint could find nothing but the enlarged spleen so my

> primary Dr and

> the Hemotologist wanted to have his spleen removed. I wanted an

> opinion from

> a Ped. surgeon. The Ped. surgeon told me not to let anyone take

> Collin's

> spleen out, and to go to the U to be diagnosed. The U diagnosed him

> to have

> liver problems and a biopsy was done in May. His liver is badly

> Cirrhosed,

> and we saw the transplant team in June and he is on the list now.

> He is

> doing ok, on pred. 20 mg, and mp6. We go back to clinic next week.

> He is in

> school and active, he has to limit his activities, of course because

> of the

> spleen, but overall he hasn't had any of the varicies, acitites,

> etc, yet,

> Thank god.

> I am a single mom with 4 children, work full time and sometimes

> it gets

> rough. My husband does what he can, we separated 9 months ago, and

> he was

> helping me financially until in april he was put in intensive care

> for 2

> weeks, Dr.s say a virus attacked his heart muscle and his heart is

> weakened

> now and he is permanently disabled, can no longer work. They are

> talking

> about sending him to the U to get on Heart transplant list So the

> finances

> have gone to H___ too. Oh don't U just love stress. But i take one

> day at a

> time and see what it brings.

> Tell me about yourself Gloria. Hope all is well with U and Yours.

> Irene

>

>

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Gloria, no my son has not had any problem with getting sick. Even when my

daughter was sick with fever and upset stomach, he didn't catch it, thank

goodness. Course i told them to stay away from each other, hard to do living

in same house, lol. I hope u are feeling better soon, did your Dr. prescribe

an antibiotic for U. So far so good here.

Get well soon, Irene

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  • 3 years later...

Gail

Sorry to veer off the subject you were on but reading that your son is

homeschooled piqued my interest. My son is 15 and while not officially

diagnosed AS there is a consensus among his practitioners that he probably

is. He has an evaluation in late January.

After a med-reduction induced meltdown in September (his meds were halved

abruptly) - the school decided that they didn't want him back in school

until the med reduction/clarification was complete. They felt that he was

too much of a wild card/had too many Sensory difficulties to be successful

at the high school. Since then apart from making sure that his absences are

excused (so that he is not accused of truancy) they have done nothing to

help him learn at home. They told me that they would assign a teacher to

come to the house a couple of times a week - to date this has not happened -

even though I am reminding them weekly that he needs one. I have access to

the assignments expected to be done (though not the worksheets or actual

pages in the books) over the internet through a ParentConnect program. I

feel as if the school feels that " out of sight/out of mind " with my son.

Additionally I have problems getting him to do work at home (he obsesses -

due to OCD - that to do schoolwork he must be in the school building). He

is worried that he will need to repeat his sophomore year.

I feel that the only way he is going to pass this year at all is if I do ALL

the teaching. The last time we tried homeschooling (last semester of 8th

grade) the results were mixed. He was very distractable and didn't get as

much done as the school wanted him to. He had a wonderful teacher that

came twice a week and let him pace if he needed while dictating his answers

to assignment questions which she then wrote down. She has since retired

though.

Do you have any suggestions or ideas on what I can do? He is weighted

(Level 2).

Thanks

Steph

>

>Hi, I also think a small group of Girl Scouts, 4-H, Martial Arts, Art,

>Youth Group or whatever would be the way to go. You or your wife would

>have to attend with her to have it work. Nine is a tough age. It is the

>year that my son,12,As. crashed. He is a very bright boy and we are

>lucky, as he has had a couple of buddies that have come to the house

>My son is Home Schooled now for 2 years.

>

>

>

>

>.

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>From: Congdon-Barnello <Luvourlives@...>

>

>Well firstly if reminding weekly doesn't work on getting a teacher in, I

>would start calling every day. After a week, maybe you could try calling

>the Superintendant every day?? Eventually they will get tired of hearing

>from you! As far as the distractability, maybe you can have him do some

>other sensory stuff first (like going for a run around the block or doing

>jumping jacks) and make a rule to take a sensory break every 15 minutes or

>so?? I am grasping at straws because it is hard to imagine dealing with a

>teen with sensory issues, when my guy is only 6!

>

>

I did some thinking after I wrote this last night and since most of my

reminders have been of the verbal variety - I am going to put them in

writing starting Monday. I need a paper trail should they continue to not

try to work with him. I always thought I had a pretty good rapport with the

school district (I work with them all the time in my job) I never imagined

that they would more or less blow him off like this. I don't know that

calling the superintendent will help much - as he is the first one who ever

had trouble with him (back in elementary - turned out later the problems he

was having were TS related) and branded him a trouble-maker.

His sensory issues are exaserbated by the size of our high school. There are

1400+ students and even the smallest lunch (where he seems to have the most

problems) has over 450 students in it. I have suggested having him eat in

an alternate area (such as a room off the media center ) not as punishment

but to avoid further problems but I keep getting told they can't make such

special circumstances for just one student. His issues are personal space

(he needs a greater than usual space around him but doesn't understand

other's personal space) - can hear the florescent lights and it really bugs

him after a while - has extremely acute sense of smell and hearing and

deviations from what he is comfortable with will leave him obsessing and

anxious - and frequently will lead to a meltdown. He also has a rigid

structure to what he feels is appropriate or should be. Everything is very

black and white. It is relatively easy to modify things at home - but not

so easily done in the school setting.

I just don't want him to lose this entire year. I breaks my heart that he

is having so much trouble.

I believe that I will contact the Parent Advocacy Group in the nearest city

on Monday. They will have me clout with the school district than I will.

Thanks for replying and for your insights. They are appreciated.

Steph

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>From: Congdon-Barnello <Luvourlives@...>

>

>Well firstly if reminding weekly doesn't work on getting a teacher in, I

>would start calling every day. After a week, maybe you could try calling

>the Superintendant every day?? Eventually they will get tired of hearing

>from you! As far as the distractability, maybe you can have him do some

>other sensory stuff first (like going for a run around the block or doing

>jumping jacks) and make a rule to take a sensory break every 15 minutes or

>so?? I am grasping at straws because it is hard to imagine dealing with a

>teen with sensory issues, when my guy is only 6!

>

>

I did some thinking after I wrote this last night and since most of my

reminders have been of the verbal variety - I am going to put them in

writing starting Monday. I need a paper trail should they continue to not

try to work with him. I always thought I had a pretty good rapport with the

school district (I work with them all the time in my job) I never imagined

that they would more or less blow him off like this. I don't know that

calling the superintendent will help much - as he is the first one who ever

had trouble with him (back in elementary - turned out later the problems he

was having were TS related) and branded him a trouble-maker.

His sensory issues are exaserbated by the size of our high school. There are

1400+ students and even the smallest lunch (where he seems to have the most

problems) has over 450 students in it. I have suggested having him eat in

an alternate area (such as a room off the media center ) not as punishment

but to avoid further problems but I keep getting told they can't make such

special circumstances for just one student. His issues are personal space

(he needs a greater than usual space around him but doesn't understand

other's personal space) - can hear the florescent lights and it really bugs

him after a while - has extremely acute sense of smell and hearing and

deviations from what he is comfortable with will leave him obsessing and

anxious - and frequently will lead to a meltdown. He also has a rigid

structure to what he feels is appropriate or should be. Everything is very

black and white. It is relatively easy to modify things at home - but not

so easily done in the school setting.

I just don't want him to lose this entire year. I breaks my heart that he

is having so much trouble.

I believe that I will contact the Parent Advocacy Group in the nearest city

on Monday. They will have me clout with the school district than I will.

Thanks for replying and for your insights. They are appreciated.

Steph

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Steph said,

My son is 15

I feel that the only way he is going to pass this year at all is if

I do ALL

the teaching. The last time we tried

homeschooling (last semester of 8th

grade) the results were mixed. He was

very distractable and didn't get as

much done as the school wanted him

to. He had a wonderful teacher that

came twice a week and let him pace if he

needed while dictating his answers

to assignment questions which she then wrote

down. She has since retired

though.

Do you have any suggestions or ideas on what

I can do? He is weighted

(Level 2).

****Hi Steph, I have followed

your posts about your son, it certainly has been tough. I have a couple thoughts, first you need to decide if you want the

school involved at all. If so then they need to start sending someone in.

However you need to ask yourself did this work before, will it work now, do you want the hassle of dealing with the school at

all. From what you’ve said in the past, I don’t think he can

make it at his old school (obviously my impression only). Is there any

alternative program available at another school that they would pay for?

If they don’t want him at school then they should pay for other

placement. However, you know this and it is easier said than done. If they

aren’t providing any type of service that benefits him maybe

it’s time to do something yourself. Not easy though as I know you

work. Does your state have Vocational Rehabilitation? If so they could

work with him as far as getting him out in the community in a volunteer

type position. You could do the state paperwork for Home School and still have them work with your

son. Any Big Brother programs? Maybe you should have a meeting with the

school and calmly ask them to come up with an alternative plan that will

work for your son. Not just a plan but one that makes sense. Obviously he

needs an alternative program with lots of alternative time away from the

school. As far as your son thinking school can only be done in the school

building, how about inter-net articles on Home Schoolers. Possibly set up

a corner with a desk, maps, globe, whatever….After

the Jan. testing you might have more in print to go on. If you want the

school involved and they don’t come up with a sensible plan you can

call your states Civil Rights Lawyer(would be on

the web) but again you need to decide what would be best for your son. How

about your states Disability Department, why can’t they get involved

in an alternative program. I’m a big believer in programs working

off special interests. A regular Ps. program is not going to work so

it’s time to move on and think of alternatives….Gail

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>From: " Gail Africa " <lilies@...>

Gail

Thank you so much for replying. I appreciate it so much.

>

>****Hi Steph, I have followed your posts about your son, it certainly

>has been tough. I have a couple thoughts, first you need to decide if

>you want the school involved at all. If so then they need to start

>sending someone in. However you need to ask yourself did this work

>before, will it work now, do you want the hassle of dealing with the

>school at all. From what you've said in the past, I don't think he can

>make it at his old school (obviously my impression only).

This is not only your impression. No matter how much I might wish that he

could just go to school like any other teen - it is rapidly becoming obvious

that it is not going to happen. I am not all at sure that I want him

involved in the public school at all .. they are so quick to call the police

when he has a meltdown. Even though they admit that they don't feel that he

has control of it - they don't hesitate to have him charged with disorderly

conduct or something. I can't see that as beneficial to at all. It

only fuels his obsessing that if he goes to school and loses control that he

will end up in placement.

Is there any

>alternative program available at another school that they would pay for?

>If they don't want him at school then they should pay for other

>placement. However, you know this and it is easier said than done.

There are two alternative schools - one I work at so he is unable to go to

that one. The other he has been at before. The current teacher there is the

one that yanked the chair out from under him last spring just because he

insisted that he needed to use the restroom and the teacher wanted him to

wait. I do not want him back in that situation again.

If they aren't providing any type of service that benefits him maybe it's

>time to do something yourself. Not easy though as I know you work.

I am willing to do whatever is necessary to ensure that gets an

education. He's got an IQ in the 120's. With the proper instruction he

could blow away anyone's conception of what he is capable of.

Does your state have Vocational Rehabilitation? If so they could work with

>him as far as getting him out in the community in a volunteer type

>position. You could do the state paperwork for Home School and still

>have them work with your son.

I am sure that there are Voc Rehab programs around. There are some

volunteer things that he is wonderful at (such as RAGBRAI - Register's

Annual Great Bike Ride Across Iowa ) He loved working on that this summer.

Any Big Brother programs? I tried to get him a Big Brother this past

spring. I was told by the coordinator (incidentally the wife of the

superintendent of schools) that he was not a candidate for the program

because he occasionally got aggressive during meltdown. Interestingly

enough - through my job I have seen kids with a much more violent background

than get a Big Brother. Hmmmm.

Maybe you should have a meeting with the school and calmly ask them to come

up with an

>alternative plan that will work for your son. Not just a plan but one

>that makes sense. Obviously he needs an alternative program with lots of

>alternative time away from the school. As far as your son thinking

>school can only be done in the school building, how about inter-net

>articles on Home Schoolers. Possibly set up a corner with a desk, maps,

>globe, whatever..

A wonderful idea. He has a desk in the dining room with his computer. He

loves looking things up on the computer. One of the problems that we had two

years ago was that the school system wanted the exact same material done

that they were covering in the school. Things actually went better when we

deviated from the listed assignments and worked on similar/related topics

but not exactly the same ones. Covered the same topic areas but not with

the materials. I like to think that by studying the material in ways that

was more comfortable with (such as using math related materials in

Construction - he's big into HGTV and home remodeling shows) he actually

learned more and did better than the cut/dried material in the book. My

only fear is that with working and a new baby going to be in the house in a

month - that the atmosphere may not be optimal for learning.

After the Jan. testing you might have more in print to

>go on. If you want the school involved and they don't come up with a

>sensible plan you can call your states Civil Rights Lawyer(would be on

>the web) but again you need to decide what would be best for your son.

>How about your states Disability Department, why can't they get involved

>in an alternative program. I'm a big believer in programs working off

>special interests. A regular Ps. program is not going to work so it's

>time to move on and think of alternatives..Gail

You've brought up so many good points. Thank you so much.

Steph

>

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Steph said:” This is not only your impression. No matter how much

I might wish that he could just go to

school like any other teen - it is rapidly becoming obvious that it is not going to happen.”

*******Steph, I think you answered your own

question here.

Does your state have Vocational Rehabilitation? If

so they could work with

>him as far as getting him out in the community

in a volunteer type

>position. You could do the state paperwork for

Home School and still

>have them work with your son.

I am sure that there are Voc Rehab programs

around. There are some volunteer

things that he is wonderful at (such as RAGBRAI - Register’s Annual Great

Bike Ride Across Iowa) He loved working on that this summer.

************This is a really important

point. In the right environment and people he can excel. I would try and find

something else he can do for volunteer work every week or two. It would have to

be someplace he wants to be and someplace he can be sure and get there. Also,

put a call into Voc. Rehab. as it may take awhile to get them involved.

One of

the problems that we had two years ago

was that the school system wanted the exact same material done that they were covering in the school.

*******This is why I would break it off with them and file to Home School. There is no way my

son, bright like , could/would do what they have set up.

Things actually went better when we deviated from the listed assignments and worked on similar/related topics

but not exactly the same ones.

********This is what we do. Some days I wonder if I am teaching enough

like he would be learning in Ps., and then we go to a program on Electricity

and I am amazed at what he knows.

I like to think that by studying the material in ways that was more comfortable with (such as using math related

materials in Construction - he's big

into HGTV and home remodeling shows) he actually learned more and did better than the cut/dried material in the

book.

*********He could watch these shows and draw some of his own

ideas or do drawings and measurements to illustrate what he saw. Have him study

Architecture from library books and on line. He could start with early in a

certain area of the world and go from there…

only fear is that with working and a new baby

going to be in the house in a

month - that the atmosphere may not be optimal for

learning.

************can he go to the Library himself or

someplace away from the house each day that isn’t too far. Our

Libraries are very HS. friendly, I see kids who spend hours there. Is there a

college around you where a student could volunteer to work with him, preferably

in a wood shop…? Personally Steph I would not send him back to Ps. Next

year he could even take classes through Community College. I think you do

need someone to give some guidance but it is not the Ps. They have failed and

that will not change no matter what you do. Set up a guideline for your son

of work he must do but let it be very open. If he is interested I bet he will

spend hours studying. Is there a place to swim near you, as this would be

good as well? Just a few thoughts…Gail

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,

I just wanted to tell you how angry your email made me. I don't understand why schools don't work harder to help our kids!!!!

Anne

-- RE: your son

GailSorry to veer off the subject you were on but reading that your son is homeschooled piqued my interest. My son is 15 and while not officially diagnosed AS there is a consensus among his practitioners that he probably is. He has an evaluation in late January.After a med-reduction induced meltdown in September (his meds were halved abruptly) - the school decided that they didn't want him back in school until the med reduction/clarification was complete. They felt that he was too much of a wild card/had too many Sensory difficulties to be successful at the high school. Since then apart from making sure that his absences are excused (so that he is not accused of truancy) they have done nothing to help him learn at home. They told me that they would assign a teacher to come to the house a couple of times a week - to date this has not happened - even though I am reminding them weekly that he needs one. I have access to the assignments expected to be done (though not the worksheets or actual pages in the books) over the internet through a ParentConnect program. I feel as if the school feels that "out of sight/out of mind" with my son. Additionally I have problems getting him to do work at home (he obsesses - due to OCD - that to do schoolwork he must be in the school building). He is worried that he will need to repeat his sophomore year.I feel that the only way he is going to pass this year at all is if I do ALL the teaching. The last time we tried homeschooling (last semester of 8th grade) the results were mixed. He was very distractable and didn't get as much done as the school wanted him to. He had a wonderful teacher that came twice a week and let him pace if he needed while dictating his answers to assignment questions which she then wrote down. She has since retired though.Do you have any suggestions or ideas on what I can do? He is weighted (Level 2).ThanksSteph>>Hi, I also think a small group of Girl Scouts, 4-H, Martial Arts, Art,>Youth Group or whatever would be the way to go. You or your wife would>have to attend with her to have it work. Nine is a tough age. It is the>year that my son,12,As. crashed. He is a very bright boy and we are>lucky, as he has had a couple of buddies that have come to the house>My son is Home Schooled now for 2 years.>>>>>.

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Steph, how old is your son again? Because if he's 16, the school system

where you are should be working on his transition training. These are

the things he will need to know as he transitions from the world of

childhood to that of adulthood: money and how to handle it, shopping

skills, cooking skills, self-care things, all the stuff we never think

about but which goes along with being an adult. The program here (which

Louie started late; we had a lousy h.s. to deal with too) also provided

job opportunities in as sheltered a setting as needed by the individual.

Louie got a good gig for his first work experience pricing neckties

and LP's at the local Goodwill warehouse store, and that wasn't the only

place the school system dealt with. So, perhaps you should be talking

to the director of Special Ed. in your district about starting your

guy's transition program, if he's of an age to do it. :) It could well

solve a whole lot of your potential problems in one swell foop! :)

Annie, who loves ya annie@...

--

If I am like others, who will be like me? -- Yiddish Proverb

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>From: Annie <annie@...>

>

>Steph, how old is your son again?

Annie

is 15. He turned fifteen the first week in September.

Because if he's 16, the school system

>where you are should be working on his transition training. These are

>the things he will need to know as he transitions from the world of

>childhood to that of adulthood: money and how to handle it, shopping

>skills, cooking skills, self-care things, all the stuff we never think

>about but which goes along with being an adult.

These are things that I am always thinking about. WIth a developmentally

delayed adult daughter - this has always been a priority in our lives. She

is better - but still has problems with how to handle money and cooking

skills. I am doing the best I can to help learn these crucial skills

- but sometimes it is better not coming from the parent. (Especially at 15

- he thinks I know nothing. Right ... I was on my own by the time I was his

age - yeah I know nothing....... ) The school has not even brought up

transitioning at all yet. I know that it is listed in the booklet for the

IEP that it is to be addressed when they turn 16 as well as it is listed

that he is to be part of the process from the time he is 14 on. I think

what is frustrating me so much is that I see many of the people involved in

the process on a weekly if not daily basis. You would think - no matter how

busy they are - with my continued questions about when we are going to get a

teacher for him - that SOMEONE would realize that he is not being properly

treated by the school system. I know that he is not ever going to be able

to deal with the public high school (though I have hopes that he would be

able to attend college at some point in his life - he is so smart) but I

want him to be able to have an appropriate education for HIM.

The program here (which Louie started late; we had a lousy h.s. to deal with

too) also provided

>job opportunities in as sheltered a setting as needed by the individual.

> Louie got a good gig for his first work experience pricing neckties

>and LP's at the local Goodwill warehouse store, and that wasn't the only

>place the school system dealt with. So, perhaps you should be talking

>to the director of Special Ed. in your district about starting your

>guy's transition program, if he's of an age to do it. :) It could well

>solve a whole lot of your potential problems in one swell foop! :)

The Director of Special Ed is one of the people that I keep hassling about

getting him a teacher. Granted she is new this semester. The old DIrector

of Special Services retired at the end of last year. He has been working

with since 4th grade. He was one of the people who initially

believed that all 's problems were ODD related but in recent years

realized that there was so much more to it. He was instrumental (as well as

the school pyschologist last spring) in making sure that 's IEP

reflected the AS symptomology and how to deal with potential problems. Too

bad that the people who needed to read the IEP (lunchroom staff - liaison

officers - hall monitors) were exactly the ones who did not read it. They

probably felt that it was only applicable in the classroom (where

incidentally he had NO problems).

Thank you so much for replying and for suggesting this. I will make sure

that they know that this is an issue that we will need to address.

Hugs

Steph

>

>Annie, who loves ya annie@...

>--

>If I am like others, who will be like me? -- Yiddish Proverb

>

>

>

>

>

>

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Ang wrote:

> Our school systems are the same...it seems as though because our kids

> are not " normal " that they don't need to have the same advantages the

> other kids have. I am going to homeschool my son as well... He is

> almost 3 now, but I see potential problems ahead and am not going to

> subject us and him to them..

>

> Ang

If you live in this country, it's Federal law that your special child be

given the same advantages educationally as typical students, in the

least restrictive environment possible. If your local school is not

doing this, they are in violation of that law (ADA/IDEA) and can be

compelled to follow it. If your son is almost 3, you might look into

developmental pre-schools for soon and developmental kindergarten for

later. Many towns and cities have these set up already, you just need

to find out where they are. The ones my son went to were run by the

public school system and thus free.

We fought for a lot of what Louie needed educationally, starting when he

hit high school. We didn't really have trouble with his schools before

then, both in Tulsa OK where we are from originally and in Albuquerque

NM where we are now and have been since Louie was 12. But we fought

those high school admin b*****ds tooth and nail....and won most of the

time because they knew that we knew that we had the law on our side.

Right now, there is a group of parents suing that school. With a

lawyer. And they'll win, because the school is in clear non-compliance

on any number of things.

Anyway, you've got time before your child is school-age to research and

decide just what you want to do. Many homeschool, I could not for

several reasons I won't go into here. But keep in mind that the law

provides your child with a free public education designed for him

specifically, and that if you need to use a lawyer to get that then you

are winning a fight not only for your child but also for every child

like him that follows him in years to come to that school. That's the

part of parenting a special kid that no one really talks about, but that

everyone in that boat knows is true. :) Also keep in mind that your son

will change *a lot* in the time between now and when he's school-age.

Lord knows ours did. :)

Not telling you what to do, you understand (I would never presume to do

that). Just letting you know what's out there and how to get it. :)

Annie, who loves ya annie@...

--

If I am like others, who will be like me? -- Yiddish Proverb

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  • 4 years later...
Guest guest

,

I am thrilled for your family that your son is doing so well. It sounds

like your son is more than on his way and you are doing everything needed to

catch him up on what he missed. I especially like the way you have let him

get ahead academically. We also did that with and it made it so other

kids accepted him more because they knew he was smart even though he was

still weird. Keep it up and keep us posted.

Marcia

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