Re: Digest Number 29

[Guest guest]

Gail,

We have 5 children with Matt being the youngest. We homeschool all but

Matt. He is in a Year round school, which I thought I'd like, but the 3

week breaks are killers. Today was his first day back to school!

YEAHHHHH!!!! (sounds cold, I know, but hey, reality is, school is my

respite!)

I'd love to talk homeschooling in general, but I think THIS loop stays

for DS-ASD, so since I dont' homeschool Matt, I stay out of a lot of

those discussions. I know there is at least 2 people here who homeschool

their child with DS-ASD. I'm a wimp, what can I say.

Email me privately to discuss more general homeschooling things.

Looking forward to hearing from you.

S

dh Jim

16, Marie 15, Dan 14, 10 and Matt 9 (and back in school

today!)

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[Guest guest]

In a message dated 2/14/2000 10:32:43 PM !!!First Boot!!!,

SMILINGGAIL@... writes:

<< ,

do you have any problems with school? We are not in a great district so it

scares me. everything is MAINSTREAM here and the regular teachers don't

know how to educate kids with Autism. (regular kids either)

Gail

>>

Gail,

Where do you live?

Donna

[Guest guest]

gail,

BIG WELCOME to our list of caring and attentive friends........ we welcome

you with open arms and brain cells......(if we have any left......hahah) i am

leah, mom to ashton, aka suma wrestler and cameron aka suma wrestler

#2....... they have been at this fighting stage lately so i just call them

wrestlers......hehe hope it ends soon or i shall be selling tickets for seats

on the couch....... ashton is 8.5 yrs old........downs, pdd and a list of

other things.....i dont actually know for sure what she has besides the

downs.....we see military doctors and i take what they say with grain of

salt....... no offense intended to any military docs out there....oops.......

she is somewhat verbal, but uses more signs and picture cards than

anything........ i dont mean to be nosy.......but i noticed seth is 4 and you

have a grandaughter who is 4 also....is this misprint or did i read

right........... ?????/ you will come to find i am always lost and behind in

here because i am usually reading at 2 or 3 in the morning when ashton is up

auditioning for some talent show that has yet to be scheduled........she has

sleep deprivation at her disgression........... well i shall shutup and go do

some laundry.......... or just go to walmart and buy new........hehh take

care and welcome.........crazy in virginia..........leah

[Guest guest]

Leah,

Sounds like a very busy house you have! I don't know how all you people have

such a good sense of humor when you get such little sleep! I am a grump if

I'm tired. jo, 7 just made preteam at gymnastics so between her flipping

around the livingroom, and Seth eating the livingroom, I spend most of my

spare time in the school room on the computer or in the diningroom trying to

figure out all the paperwork on Seth (if my 9 year old isn't practicing the

piano, which she does 24-7). My mother held Seth when he was born and said

" Don't you think these kids are better off aborted " so I realized then that we

were in this alone. I thought if his own Grandmother can't accept him, the

rest of the world wouldn't either. Glad I was wrong about that. The world

might not understand him, but the whole world isn't against him either. Yes,

my grandson is also 4! Quite an experience to be pregnant with your daughter

I'll tell you! There is 7 weeks difference between the boys. My " normal "

grandson is much more of a handful than Seth! Thanks for the welcome Leah,

you people here are great!

Gail

mother of Seth-4 jo-7 -9 -22 and -24

grandmother of Errick-4 and wife of Guy-my Hero!

[Guest guest]

Donna,

we live in Elmira, NY. Schools are not great here. (nothing is great here)!

small town, small ideas or something like that. That's why I homeschool the

girls. They make it tough to do that so I'm sure they will make it harder

for me to keep Seth home. They won't want to miss all that extra money!

Seth has been left on the bus for over 3 hours already. The school is 10

minutes away and he spends 2 hours at the least on a bus everyday. Sometimes

there isn't even an aide on the bus, just Seth and the driver! I hate it.

Screamed and hollered all I can. It's not Seth with the problems here, It's

the " system. "

Gail Again--I like this place!

[Guest guest]

.

From what I have been told, licking is not pica, just a sensory thing. Still

seems strange, the things they lick! Seth licks everything too! But pica is

the actual ingestion of weird things. Even heard if one that eats buttons

and things like that. Seth mostly eats poop, brick, sand, plaster, hair,

carpet or anything he can put his mouth to. The only thing he picks up and

puts in his mouth is poop. I don't know of any kids with special needs in our

Catholic schools here. I know of one with minor hearing problems, but that's

it. Loved what Beth said about the teachings of the Church on life

issues. Have to take that one up with our parish Priest! being realistic,

we live in a big prison town here and some of the people that move here to

stay close to the prisoners are not very moral and I would just as soon keep

my kids home. Seth would probably not run into a lot of that in special

classes, but they like to mainstream and he has enough to deal with without

adding what words and actions he could pick up in a regular classroom. His

teacher just asked me if I would agree to a 1-on-1 aide for him. Like you,

could have had this done in September when I asked for one and they said they

didn't think it was necessary. They seem to think they know Seth better than

I do for some odd reason! Now it's another meeting to increase therapy and

request an aide. Good Grief! The people that work with Seth are great, but

the SYSTEM, I can live without! It took 7 months just to get Seth on

Medicaid because there are so many hands in the pot here. Everyone thought

someone else was taking care of it I guess. I'm looking forward to hearing

from you again!

Gail

[Guest guest]

.

From what I have been told, licking is not pica, just a sensory thing. Still

seems strange, the things they lick! Seth licks everything too! But pica is

the actual ingestion of weird things. Even heard if one that eats buttons

and things like that. Seth mostly eats poop, brick, sand, plaster, hair,

carpet or anything he can put his mouth to. The only thing he picks up and

puts in his mouth is poop. I don't know of any kids with special needs in our

Catholic schools here. I know of one with minor hearing problems, but that's

it. Loved what Beth said about the teachings of the Church on life

issues. Have to take that one up with our parish Priest! being realistic,

we live in a big prison town here and some of the people that move here to

stay close to the prisoners are not very moral and I would just as soon keep

my kids home. Seth would probably not run into a lot of that in special

classes, but they like to mainstream and he has enough to deal with without

adding what words and actions he could pick up in a regular classroom. His

teacher just asked me if I would agree to a 1-on-1 aide for him. Like you,

could have had this done in September when I asked for one and they said they

didn't think it was necessary. They seem to think they know Seth better than

I do for some odd reason! Now it's another meeting to increase therapy and

request an aide. Good Grief! The people that work with Seth are great, but

the SYSTEM, I can live without! It took 7 months just to get Seth on

Medicaid because there are so many hands in the pot here. Everyone thought

someone else was taking care of it I guess. I'm looking forward to hearing

from you again!

Gail

[Guest guest]

> ,

> do you have any problems with school? We are not in a great

> district so it

> scares me. everything is MAINSTREAM here and the regular teachers

> don't

> know how to educate kids with Autism. (regular kids either)

> Gail

Gail,

Yes, we have had problems with the school, but I suppose not earth

shattering ones. We live in Las Vegas, just moved here from Cincinnati.

I thought the schools were bad in Cincinnati, and I know they are here.

It is very different. We are Catholic, and in Cincinnati all the kids

went to Catholic Schools. I found 2 that would take Matt, which was

something! I really had to work hard to get him in and work myself to

make sure the supports were there. Here in Nevada, there are only 6

Catholic Grade schools in all of the area, and they have huge waiting

lists as it is. They won't even talk about Matt! Tuition is very high,

and there is only one Catholic High school in all of NEvada. I have

heard enough people talk to know that there is no difference between

public and that high school. So we homeschool all of my older kids. We

are actually looking into letting the oldest go back to school next year.

The school district has a joint agreement with the local community

college, and she can take both high school and college classes on the

community college campus, be in a graduating class of about 50-60 with

all brighter kids who are motivated to learn. I can deal with that. But I

guess you were asking more about the special ed component, huh???

The school that Matt attends is our local public school. They tried hard

to have us take him to other schools, but I insisted and he is there. He

is doing quite well academically and has a 30 word sight word vocabulary.

They are going to try to cut his speech therapy since according to them,

his speech has reached the most that can be expected based on his IQ.

They have not added the ASD dx to his file, and that is our next big

fight. I got a letter from his doc in Cincinnati with that official dx,

now I have to ask for another IEP meeting. They won't be happy, but if

they would have put it on there when I first brough it up at the first

meeting, they wouldn't have to meet again, right?? Anyway, he is in a

regular 2nd grade for some of the day, and in the " resource room " for up

to 3 1/2 hours a day. They have hired a person to give him 1-1 assistance

for much of the day, but at our last conference the resource room teacher

expressed the need to get him weaned off of her as they " needed her in

other places, too! " TOo bad. His IEP says he needs 1-1 and they need to

give that to him! One of the biggest problems we have had so far this

year is that he has " dropped his drawers " about 4 times. That doesn't go

over well. It is always on the playground, and no adult has been right

there to observe what happened immediately before this happened. If it

happens again, I think we have a good case for the aid needing to be

with him, helping him to socialize, on the playground.

As far as PICA, I too would like to know if licking is included. Matt has

mouthed and licked things his whole life, windows and shoes being

favorites. He also will lick the floor, and the dog, and people on

occassion. He seems to love to have markers in his mouth. DOes this

count as pica? Luckily, we have not had the " poop eating " , in fact, when

he needs to be changed and is laying on the floor, he will gag and most

of the time keep gagging until he has thrown up-just a little, but he

does it. Too weird!

Well, I have gone on enough.

Happy Valentines day to all out there.

S

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[Guest guest]

Please take me off of the mailing list. My address is sears_l@...

Thanks

Re: Anxiety

Beth:

Your message helped me. I now know that others have the same anxieties and

we found that working together as a family helps.

Take care.

Phyllis

Anxiety

Date: Tue, 13 Jun 2000 17:33:28 EDT

Hi Amy,

I am a counselor and an ICD recipient. Anxiety is really a normal part of

the process. When it starts affecting how we go about our daily activities,

it is important to see someone who understands both. We experience

post-traumatic stress disorder which presents itself with anxiety,

hypervigilance/arousal, insomnia, irritability, preoccupation with the event.

Some of us get over it sooner than others. It can also affect us down the

road a while after our 'incident.' You may be able to ask your EP about a

local therapist who may help you. Or, a local psychiatrist, who may be able

to prescribe a medication that will help you, is not addictive and won't

effect your current cardiac medications. We are not crazy, we are just

experiencing normal reactions to severe life-threatening illnesses. Anxiety

increases and decreases with our illness. (i.e. If we get zapped, If we

don't get zapped, etc.) Talking with others is very helpful. I had a

therapist for awhile right after my SCD and I knew what was happening. I

will always recommend the zapchats on Tuesdays and Thursdays. There are

other chats on the web as well. Feeling 'normal' and not alone goes a long

way toward healing.

Take care of yourself,

Beth

______________

Look for Beth's Listening Hearts Mall at www.calypso.com/listeningheartsmall

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[Guest guest]

Hi, Kristy.

You're lucky to be able to get your surgery at 19. I didn't get mine until

I was in my mid-twenties, and the doctor said I would have gotten a much

better correction if it could have been done at 19! Also, spinal surgery

has advanced a lot since I was young - I'm 52, so the surgery I did have

done was much cruder than they can do now.

If you read this listgroup much, you may begin to fear that having scoliosis

dooms you to a life of back problems. No, it's just that those of us who

*do* have a lot of problems subscribe to this list. Most people who have had

a good correction done in their late teens do not have much problem later.

Best wishes to you.

Morag

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