Introduction

[Guest guest]

Hello ... Welcome to a great site, w/ great people. Your intro certainly is a breath of fresh air and very welcomed!! I met a man at the Hospital one day, in the lobby, and he inquired if I was looking for liver. I said, 'well, yes ... as a matter of fact'. This rosy cheeked, relaxed smiling person came over to me with a spring in his step, said I just had a TP, I think he said, 3 months prior and that as soon as he woke up, he didn' know if he was actually in his body or not... He no longer felt the constant pain we get used to and accept, daily. He also said he didn't know one was supposed to feel that good!! Man, this guy projected a not hyper... but positive force that was hard to ignore.. Kinda' like static electricity, of sorts. Good read Thanks.. and Good Luck! What part of the UK are you in/from? Deli man jerri

neely <all4jerri@...> wrote: Hi ,Thank you for the inspirational introduction. Itreminds me to always look forward to tomorrow. I am a 50 year old swf with Genotype 1. I am alsosober (13 years) and in my 22nd week of treatment withPegasys and Ribivarin. I was informed recently that Iwill be doing an 18 month treatment plan due to thegreat number of relapses with treatment. Keep up the great work and attitude.Jerri N. --- W <brianw6orange (DOT) net> wrote:> Dear all> > I joined this group last week and would like to> introduce myself.> I am a 45 year old who was diagnosed with HCV in> 2001(Genotype 1A, >13 million viral copies per ml> blood, very high enzyme levels).> I am an ex IVDU (used heroin, cocaine, amphetamines> etc etc for 20 years – I have been clean and sober> for 6 years).> At the time of my diagnosis, I felt that life had> come to an end and that I would never get a> partner/get married, everyone would reject me and> that I would die a slow, painful very early death.> My life then became ruled by the virus, I became> “Mr Hepatitis Câ€> In May 2002 I commenced a 1 year course of Pegylated> interferon and Ribivarin. At week 12 my PCR showed> undetectable viral load. At 6 months I began>

suffering from very low white blood cell count and> anaemia. At this point my interferon and ribivarin> dosage was halved. I went on to complete 52 weeks of> therapy. Disappointingly my post treatment PCR> showed that the virus had bounced back to greater> than pre treatment levels as had my enzyme levels.> At this point I decided that I could no longer allow> myself to be ruled by this disease and that I needed> to make a big change in how I approached things> related to my health.> I gave up smoking and began running, eating> healthily and taking milk thistle every day.> Since then I have run 3 half marathons and 3 full> marathons raising thousands of pounds for cancer and> liver support charities. I will be running the> Edinburgh Marathon in May.> My health has improved drastically even though at my> 6 monthly hospital check ups the viral levels

are> still well over 13 million but my enzyme levels are> perfectly normal. I have the occasional bit of liver> pain/discomfort but essentially I am fitter that I> have ever been in my life and am living a very full> and happy life. I have also been married for 3> years!> Treatment wise my consultant believes that at the> moment there is no point in trying any of the> existing treatments but we are confident that at> some point in the not so distant future there will> be something suitable for me and as long as I keep> fit and positive I will be perfectly OK.> My advice to anyone who has been newly diagnosed> with HCV is not to become too negative about it. It> is by no means as bad as you think and as long as> you look after yourself physically, emotionally and> spiritually you are in with a great chance.> > Take care everyone>

> > > __________________________________________________

[Guest guest]

Hi Dana, welcome!

I'm also divorced, single mom of 3 sons. My OCD son is 18 now; he

has a twin (not identical) and then I have a son age 22.

First - hooray! for a teacher who has some knowledge of OCD! (sorry,

had to get that out!)

OK, now to your questions --

1. Currently, my son's anxiety is very bad, and we can't start CBT

until it's chemically treated and he can relax and think a little

more clearly, which will be in a month (oh, the hassle of getting an

appointment!). Any short term suggestions to help him?

***See answer to #2!

2. He has a diary, and he's created his " OCD Monster, " called Snake

Hair, who he's using to represent the OCD and who he's been telling,

" You're not the boss of me, " etc. Is this a stupid idea?

***Sounds like he's already getting a good start! No, not a stupid

idea at all, it's perfect. (like the name, by the way: Snake Hair)

Having to wait until the medication lowers anxiety to begin CBT is

common. You two might can come up with 1 or 2 other little things to

begin working on before the appt. Make them " easy " ones that you/he

feel won't spike his anxiety too much right now. Even just trying

to " hold out " an extra 5 seconds before doing some compulsion or

saying something, etc., is an easy way to start; build up towards 8,

10 seconds....

3. Any suggestions for support for his sisters, who are pretty

freaked out?

***Educate them about OCD. Maybe you can find an article at a site

below to help?

http://www.homestead.com/westsuffolkpsych/Articles.html

http://www.worrywisekids.org

You can keep it simple or get more technical (depending on their

ages, etc.). I know with my son it began at age 11.5 and he is an

*intellectual, logical* sort of person so I went into the " brain

chemistry " part of it at first when trying to explain.

4. Sadly, he has an obsession about sex and body parts. His therapist

told him, #1 rule is he can't act on any of those impulses, but it's

very scary to hear him talk about sex (which he doesn't even

completely understand). What can I do about this?

***Well this is common too with OCD. And it doesn't matter if you

have always restricted access to TV, movies, games,

conversation...around a child, sexual stuff can still pop up with OCD

and have parents wondering " how? " I'm sure it worries your son but

let him know that even kids younger than him have ended up with

thoughts on this topic too, it's common wtih OCD, he's not alone!

And his upcoming therapy will help with this too, how to handle the

thoughts, images or compulsions, etc.

5. Anything that you'd suggest I should or shouldn't do in these

early days?

***Seems like you are on the right track! Sometimes you have to

accommodate OCD some in the beginning. Plus you can't always work

on *all* the OCD at the same time so you work on some things, ignore

others.

Have to go, but glad you found us!

single mom, 3 sons

, 18, with OCD, dysgraphia and Aspergers/autism (mild)

[Guest guest]

Hi Dana, welcome!

I'm also divorced, single mom of 3 sons. My OCD son is 18 now; he

has a twin (not identical) and then I have a son age 22.

First - hooray! for a teacher who has some knowledge of OCD! (sorry,

had to get that out!)

OK, now to your questions --

1. Currently, my son's anxiety is very bad, and we can't start CBT

until it's chemically treated and he can relax and think a little

more clearly, which will be in a month (oh, the hassle of getting an

appointment!). Any short term suggestions to help him?

***See answer to #2!

2. He has a diary, and he's created his " OCD Monster, " called Snake

Hair, who he's using to represent the OCD and who he's been telling,

" You're not the boss of me, " etc. Is this a stupid idea?

***Sounds like he's already getting a good start! No, not a stupid

idea at all, it's perfect. (like the name, by the way: Snake Hair)

Having to wait until the medication lowers anxiety to begin CBT is

common. You two might can come up with 1 or 2 other little things to

begin working on before the appt. Make them " easy " ones that you/he

feel won't spike his anxiety too much right now. Even just trying

to " hold out " an extra 5 seconds before doing some compulsion or

saying something, etc., is an easy way to start; build up towards 8,

10 seconds....

3. Any suggestions for support for his sisters, who are pretty

freaked out?

***Educate them about OCD. Maybe you can find an article at a site

below to help?

http://www.homestead.com/westsuffolkpsych/Articles.html

http://www.worrywisekids.org

You can keep it simple or get more technical (depending on their

ages, etc.). I know with my son it began at age 11.5 and he is an

*intellectual, logical* sort of person so I went into the " brain

chemistry " part of it at first when trying to explain.

4. Sadly, he has an obsession about sex and body parts. His therapist

told him, #1 rule is he can't act on any of those impulses, but it's

very scary to hear him talk about sex (which he doesn't even

completely understand). What can I do about this?

***Well this is common too with OCD. And it doesn't matter if you

have always restricted access to TV, movies, games,

conversation...around a child, sexual stuff can still pop up with OCD

and have parents wondering " how? " I'm sure it worries your son but

let him know that even kids younger than him have ended up with

thoughts on this topic too, it's common wtih OCD, he's not alone!

And his upcoming therapy will help with this too, how to handle the

thoughts, images or compulsions, etc.

5. Anything that you'd suggest I should or shouldn't do in these

early days?

***Seems like you are on the right track! Sometimes you have to

accommodate OCD some in the beginning. Plus you can't always work

on *all* the OCD at the same time so you work on some things, ignore

others.

Have to go, but glad you found us!

single mom, 3 sons

, 18, with OCD, dysgraphia and Aspergers/autism (mild)

[Guest guest]

Hi Dana:

I have 4 kids 8,7 2.5 and 10 months. 7 Diagnosed recently OCD. Had

no idea of this disorder...

Bought books to and waiting...

1.Prozac was a big difference in our lives, like a miracle, I felt

my little boy was back, happy and enjoying life.

2. Before prozac we used the notebook to write things down or

drawing... worked OK. He can express himself and feels empathy if I

do so. He also has a snake idea named " Shifo " when he feels

discomfort he tells " go away, I am not going to do what you tell me "

3. I talk very much with brother 8 y.o. a tell him to be patient and

understand he has no control. He was very angry to him and had anger

problems, I tried to do different activities with them and not leave

them alone (they would always start a big fight).

4. On sex topic, same problem, asking for advise. I constantly check

him with other kids.

Welcome to the group, hope it helps. And best wishes.

Annel

>

> Hi,

>

> I'm a divorced mom of 3 kids (15 and 13 yo girls) and an 8 yo son

who

> was just diagnosed with OCD (his dad also has it). As background,

I

> work as a special education teacher and have a fair amount of

> knowledge of OCD and some treatment ideas.

>

> I'm very pleased to find this resource. I've got a great therapist

> for all the kids, and have a few questions:

>

> 1. Currently, my son's anxiety is very bad, and we can't start CBT

> until it's chemically treated and he can relax and think a little

more

> clearly, which will be in a month (oh, the hassle of getting an

> appointment!). Any short term suggestions to help him?

> 2. He has a diary, and he's created his " OCD Monster, " called

Snake

> Hair, who he's using to represent the OCD and who he's been

telling,

> " You're not the boss of me, " etc. Is this a stupid idea?

> 3. Any suggestions for support for his sisters, who are pretty

freaked

> out?

> 4. Sadly, he has an obsession about sex and body parts. His

therapist

> told him, #1 rule is he can't act on any of those impulses, but

it's

> very scary to hear him talk about sex (which he doesn't even

> completely understand). What can I do about this?

> 5. Anything that you'd suggest I should or shouldn't do in these

> early days?

>

> I've ordered a few books that were recommended from this board.

Hope

> to be chatting with many of you over the next few months!

> Dana

>

[Guest guest]

You will be very pleased with Emory. It takes a while to get the eval, but AMy COrbin does a clinical eval for only $45 to help get you started and it is so very helpful as you wait.jenniferdoxakis <jenniferdoxakis@...> wrote: My name is and my 3 yr old, Draven was just diagnosed with Autism. His neurologist referred me to the Emory Autism Center for an evaluation for an official diagnosis. I knew something was up when he started having absence seizures when he was 18 mths old. By the time

he was 2 he still didnt have the speech & language milestones like he should have so his ped referred him to Babies Cant Wait. It took six months before we were finally able to get someone to work him on his speech. They said it was better to have someone come into the home enviroment and no one was available or didnt take Peachstate. We finally settled for a special instructor who worked with him 1 hr a week for 4 mths until he turned 3 yrs of age. He entered special needs preschool on his birthday. He had an MRI and the results said that his myelination was immature & underdeveloped. The neurologist said they want to do another one in 6 mths so they can compare it to the first one. Isnt there something else they can do before then. They feel that this is why he is has autism and why his speech is affected. His vocabulary is limited to about 40 words. He does try to communicate but most of the time you cant

understand him. He has learned one sign so far, still working with him on some more. For the most part he is able to show me what he wants if it is within his sight. Other times he wants something we dont have and he has a complete meltdown, he will throw himself on the floor and kick and scream. I had to get him a backpack harness to put on him when were out because he wont let me hold his hand or carry unless he intiates the contact. This way I can still have hold of him and he can have his own space. I dread going to the grocery store because a scene usually ensues. I had been at the ER twice for 2 of my children and they moved us to a quiet room because he and my other son were being so loud and disruptive. He is still in diapers, potty training has been unsuccessful so far but were still working with it. He is very smart, but we dont know what his limitations yet, he is still too young. He can point out body

parts and things of the sort. Autism was suspected because of the speech and strange behaviors like he was lining up everything in a row. He has a knack for taking things apart, he had my nail clippers and other things in pieces. He got hold of a screw driver once and took the screw out of one of his toys to get the batteries out because they were dead. An Autism panel was done to check for certain genetic conditions (Fragile X) and it was negative. Dont know what to expect I will let you know what the Autism center says. Don't know what part of the spectrum he is yet. My 8 yr old son, is also suspected of having Autism among other things, I will put that in another post.

[Guest guest]

You will be very pleased with Emory. It takes a while to get the eval, but AMy COrbin does a clinical eval for only $45 to help get you started and it is so very helpful as you wait.jenniferdoxakis <jenniferdoxakis@...> wrote: My name is and my 3 yr old, Draven was just diagnosed with Autism. His neurologist referred me to the Emory Autism Center for an evaluation for an official diagnosis. I knew something was up when he started having absence seizures when he was 18 mths old. By the time

he was 2 he still didnt have the speech & language milestones like he should have so his ped referred him to Babies Cant Wait. It took six months before we were finally able to get someone to work him on his speech. They said it was better to have someone come into the home enviroment and no one was available or didnt take Peachstate. We finally settled for a special instructor who worked with him 1 hr a week for 4 mths until he turned 3 yrs of age. He entered special needs preschool on his birthday. He had an MRI and the results said that his myelination was immature & underdeveloped. The neurologist said they want to do another one in 6 mths so they can compare it to the first one. Isnt there something else they can do before then. They feel that this is why he is has autism and why his speech is affected. His vocabulary is limited to about 40 words. He does try to communicate but most of the time you cant

understand him. He has learned one sign so far, still working with him on some more. For the most part he is able to show me what he wants if it is within his sight. Other times he wants something we dont have and he has a complete meltdown, he will throw himself on the floor and kick and scream. I had to get him a backpack harness to put on him when were out because he wont let me hold his hand or carry unless he intiates the contact. This way I can still have hold of him and he can have his own space. I dread going to the grocery store because a scene usually ensues. I had been at the ER twice for 2 of my children and they moved us to a quiet room because he and my other son were being so loud and disruptive. He is still in diapers, potty training has been unsuccessful so far but were still working with it. He is very smart, but we dont know what his limitations yet, he is still too young. He can point out body

parts and things of the sort. Autism was suspected because of the speech and strange behaviors like he was lining up everything in a row. He has a knack for taking things apart, he had my nail clippers and other things in pieces. He got hold of a screw driver once and took the screw out of one of his toys to get the batteries out because they were dead. An Autism panel was done to check for certain genetic conditions (Fragile X) and it was negative. Dont know what to expect I will let you know what the Autism center says. Don't know what part of the spectrum he is yet. My 8 yr old son, is also suspected of having Autism among other things, I will put that in another post.

[Guest guest]

,

What side of town are you on? We have a support group in Fayette

A.C.E.S. (Autism Coaching, Education & Support) that meets at the

Peachtree City Library. Next meeting is on May 20th from 2-4. If

you're close, we'd love for you to come to it. I also have a 3.4

year old who is autistic, PDD-NOS & severe developmental delays who

we was diagnosed last May and who is about 60% recovered as of today,

thanks to biomed intervention. Feel free to email off list if you

need some encouragement! anjellica@...

Anjellica, Ian's Mom & Advocate & Support Group Leader

Tyrone, GA

>

> My name is and my 3 yr old, Draven was just diagnosed with

> Autism. His neurologist referred me to the Emory Autism Center for

> an evaluation for an official diagnosis. I knew something was up

> when he started having absence seizures when he was 18 mths old.

By

> the time he was 2 he still didnt have the speech & language

> milestones like he should have so his ped referred him to Babies

Cant

> Wait. It took six months before we were finally able to get

someone

> to work him on his speech. They said it was better to have someone

> come into the home enviroment and no one was available or didnt

take

> Peachstate. We finally settled for a special instructor who worked

> with him 1 hr a week for 4 mths until he turned 3 yrs of age. He

> entered special needs preschool on his birthday. He had an MRI and

> the results said that his myelination was immature &

underdeveloped.

> The neurologist said they want to do another one in 6 mths so they

> can compare it to the first one. Isnt there something else they

can

> do before then. They feel that this is why he is has autism and

why

> his speech is affected. His vocabulary is limited to about 40

> words. He does try to communicate but most of the time you cant

> understand him. He has learned one sign so far, still working with

> him on some more. For the most part he is able to show me what he

> wants if it is within his sight. Other times he wants something we

> dont have and he has a complete meltdown, he will throw himself on

> the floor and kick and scream. I had to get him a backpack harness

> to put on him when were out because he wont let me hold his hand or

> carry unless he intiates the contact. This way I can still have

hold

> of him and he can have his own space. I dread going to the grocery

> store because a scene usually ensues. I had been at the ER twice

for

> 2 of my children and they moved us to a quiet room because he and

my

> other son were being so loud and disruptive. He is still in

diapers,

> potty training has been unsuccessful so far but were still working

> with it. He is very smart, but we dont know what his limitations

> yet, he is still too young. He can point out body parts and things

> of the sort. Autism was suspected because of the speech and strange

> behaviors like he was lining up everything in a row. He has a

knack

> for taking things apart, he had my nail clippers and other things

in

> pieces. He got hold of a screw driver once and took the screw out

of

> one of his toys to get the batteries out because they were dead. An

> Autism panel was done to check for certain genetic conditions

> (Fragile X) and it was negative. Dont know what to expect I will

let

> you know what the Autism center says. Don't know what part of the

> spectrum he is yet. My 8 yr old son, is also suspected of

> having Autism among other things, I will put that in another post.

>

[Guest guest]

,

We have an autism support group that meets at the Peachtree City

Library if you're close enough to come to it. Our next meeting is

going to be on May 20th from 2-4. Email if you would like more info,

anjellica@...

Anjellica, Ian's Mom & advocate (60% recovered since May 06)

>

> > Hi. I'm new to this group. My son, , is 3 years old. We live

in

> > Southeast GA. He was in the Babies Can't Wait program until he

turned 3. I'm

> > still not completely sure he is autistic. The neurologist I saw

recently

> > said he shows strong signs of autism. Do any of you feel he is too

young to

> > diagnose?

> >

>

[Guest guest]

,

We have an autism support group that meets at the Peachtree City

Library if you're close enough to come to it. Our next meeting is

going to be on May 20th from 2-4. Email if you would like more info,

anjellica@...

Anjellica, Ian's Mom & advocate (60% recovered since May 06)

>

> > Hi. I'm new to this group. My son, , is 3 years old. We live

in

> > Southeast GA. He was in the Babies Can't Wait program until he

turned 3. I'm

> > still not completely sure he is autistic. The neurologist I saw

recently

> > said he shows strong signs of autism. Do any of you feel he is too

young to

> > diagnose?

> >

>

[Guest guest]

Covington, GA www.ourchurch.com/member/b/amyangel/

Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

[Guest guest]

Hello Sara, My name is Kristie. My DS was dx'd last Sept. just after his 4th birthday. As I look back over this last 10 months, I'm amazed at just how far we have come. It takes tons of effort on his and my part, but a year ago it looked very grim for him. He was angry, violent, unpridictable, didn't sleep, ate entirely too much, would have melt downs that would last 6 hours or more. He often hurt himself or others. For Christmas, one of his presents were 4 stitches in his head! (He was out of control at a store and ran into the side of a bench) I run an in-home child care, and most of the children here are roughly his age. I couldn't take my eye off of him for an instant. If I did, I was likely to come find him on top of another child trying to choke them. It was horrible and exhausting!! So many things I just couldn't understand, like how or why he would do things. for example,

on his birthday we took him and two other children to play mini-golf. Well, the child sitting next to my DS got sick. My son freaked out.. He undid his seat belt and yanked on the door closest to him trying to get out, screaming the entire time.. "Get me out of here!" I thank God we had the child lock enforced on the van. We were crossing a river, going about 50 MPH. Also, I couldn't understand why a foot of snow and school (for his sister) and work for his dad being called off could be so upsetting for him.. He would spend the entire day in a melt down, flapping hands, chewing clothes, hands, toys, etc... pouncing off of everything, line up his toy cars throughout the house and threaten to kill you if you moved one, even if by accident. I would talk calmly in hopes to reach him, but he just wasn't there. Again, very frustrating!! And honestly, I was about to pull out what little hair I had left. The

Developmental Pediatrician reccomended both Occupational and Behavioral Therapy. The Behavioral was 1st to start. At first, things only got worse. Several months later, he started O.T. through Easter Seals. I can't even put into words how much of a blessing OT has been for my son (knowing full well each and every child is different, I'm speaking only of our experience) Once we addressed his many sensory issues, the walls and melt downs came down, revealing this amazing, loving, tender, FUNNY, sweet, gentle, intelligent little boy. Now, grant it, He's still Aspergers, and still has many things he has to work hard at, but we feel empowered now, compared to the despair we felt just 10 short months ago! I should also state out that I'm a firm believer of the GF/CF diet (gluten and casein free) But came about it in a very unusual way. You see, due to his Celiac Disease, and other food allergies/intolerances.. he was already on the diet prior

to his AS dx! (He was casein free from 4 months of age and GF at 2 years) We understand clearly now why he would react so behaviorally every time he would have a gluten or casein (dairy) infraction. Again, having close friends who have tried the diet for their own AS child and hasn't had the results we have had, I know the diet may not work for everyone. Simply said, OUR story is the diet, OT, and lots of love and hard work is what is working for my son, and in my honest opinion keeping him from being on drugs or worse yet, placed in a home. Which last year was my strongest fear!! As far as family/friend/school support,.. well, that's a bit harder. my parents are the only real family involved in my kids life. Everyone lives so far away anymore, even my parents are 6 hours away, however visit as much as possible. They don't fight what we are doing for our son,

however, they simply do not understand, therefore, they're not sure how to support. We have decdided to homeschool my son, so I can't comment on teachers other than his Sunday School theachers whom have been wonderful! Dealing with the general public is still something we're slowly working on, but I'm happy with the overall progress we've made so far. Oh, and he still sees his Behavioral Therapist. Now that the sensory has been addressed, we find both forms of Therapy helpful. I wish the best to both of you, I hope you've found our story somewhat helpful. God Bless! Kristie M. "The truth of God's love is not that he allows bad things to happen.... it's his promise that he will be there with us when they

do!"

Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out.

[Guest guest]

hi Sara ... It sounds like you are at the beginning of what could be

an incredible journey with your son. I believe that because I had a

similar experience and wouldn't trade it for the world. Because of

my " adventure " , my son, who is 34 years old now, has no signs

whatsoever of autism and runs an organization. We started a non-

profit organization twenty-five years ago to help other parents in

your situation with their children. If you would like more help, you

could try the Autism Treatment Center of America website and see how

you feel about all the information presented.

-

>

> Hi. My name is Sara and I have a son who is almost 4. He is

currently being assessed for Asperger's Syndrome...and will likely be

officially diagnosed in the next few weeks. I really don't know any

parents locally that have children with AS....especially in his age

group. I am hoping to meet other parents that have been through this

whole process. I'm curious how and if you told

friends/family/teachers .....and how it is best explained to others

in general. I'd also like to know what kind of services you find to

be the most (or least) helpful for your children. Thank you so much

for your time.

>

[Guest guest]

My name is Barbara. Not sure where you are but I would love to talk

with you at any time. My son is 7 now and has Aspergers, PPD & OCD.

What books have you read so far? Pick up Hitchhiking through

Aspergers by Lise Pyles. my IM is the same as my e-mail

valet_4u@.... I live in California. I know that just getting

the DX is a hard road.

Hugs,

Barbara

>

> Hi. My name is Sara and I have a son who is almost 4. He is

currently being assessed for Asperger's Syndrome...and will likely be

officially diagnosed in the next few weeks. I really don't know any

parents locally that have children with AS....especially in his age

group. I am hoping to meet other parents that have been through this

whole process. I'm curious how and if you told

friends/family/teachers .....and how it is best explained to others

in general. I'd also like to know what kind of services you find to

be the most (or least) helpful for your children. Thank you so much

for your time.

>

[Guest guest]

Hi Sara, welcome to the

group. I have an almost 15 year old with Asperger’s, OCD, and Tourettes.

He is a nice kid and doing well, considering a couple very rough years when he

was 9 & 10 and ‘crashed’. He was almost 10 before he was

diagnosed. Therefore, knowing now might be better for you and your son. Once

your son is diagnosed you could just tell family/friends and tell them you will

e-mail them a web site so they might be able to understand your son’s challenges better. I don’t

discuss my son much with my family, as they have always thought he was spoiled,

and they really don’t care. Hopefully yours is different, but look for

other support if they make things harder for you. Personally, if I had a young

child I would look for school where the programming is geared to Asperger kids.

Few and far between, but more and more I think. We are in Vermont which toots “inclusion”,

which is not working by the way. Basically, aides are hired off the street, and

there is no consistent, high quality programming. My son has been Home Schooled

since he was 10. I just can not be positive about Public School programming and

the student population of Public Schools. I’m sounding negative, but

really your son can have a good life with the right supports, programming. If I

were you I’d schedule a few hours at your local school and see what you

think. Find out ahead of time exactly what type of program your son would be

in. You could give it a try, but don’t hesitate to go with your gut

feeling and speak up if things don’t seem right. Ask any questions. Gail in Vermont www.tonyattwood.com Tony Attwood or O.A.S.I.S.

Introduction

Hi. My name is Sara and I have a son who is almost

4. He is currently being assessed for Asperger's Syndrome...and will

likely be officially diagnosed in the next few weeks. I really don't know

any parents locally that have children with AS....especially in his age

group. I am hoping to meet other parents that have been through this

whole process. I'm curious how and if you told friends/family/teachers

......and how it is best explained to others in general. I'd also like to

know what kind of services you find to be the most (or least) helpful for

your children. Thank you so much for your time.

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM

[Guest guest]

Hi Sara, welcome to the group! My son was diagnosed with AS in grade 2 at age 7.5. I told my family and friends right away because it was a relief to know exactly what the problem was and that we could do things to help him and that it wasn't "bad parenting" "spoiled child" etc.

It was a bit hard to explain as we hadn't learned much ourselves at that point but I did some Internet searches and was able to send websites to people to make them understand. Some still don't get it but that's their problem, not mine!

I find talking about it makes it easier to deal with (but then again, I'm a talker!! Lol)

Good luck, you are lucky to catch it so early! There are lots of things you can do to help your son!!

And this is a great place to find help. Never hesitate to ask a question here. There are so many helpful people with lots of great advice!

Estevan, SK

Canada

-----Original Message-----From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of Casey WellsSent: Wednesday, July 18, 2007 5:02 PMAutism and Aspergers Treatment Subject: Introduction

Hi. My name is Sara and I have a son who is almost 4. He is currently being assessed for Asperger's Syndrome...and will likely be officially diagnosed in the next few weeks. I really don't know any parents locally that have children with AS....especially in his age group. I am hoping to meet other parents that have been through this whole process. I'm curious how and if you told friends/family/teachers .....and how it is best explained to others in general. I'd also like to know what kind of services you find to be the most (or least) helpful for your children. Thank you so much for your time.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM

No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM

[Guest guest]

Hi Sara,My name is , we are currently in Southern California and moving to Northern Arkansas on the 1st. I have four kids - Max who is almost 19 with ADHD/LD/SID - he and his girlfriend Jackie just came home to go to school at Arkansas State, Molly who is 15 with AS, OCD, Chronic Tics, BP, Sara Cait who is 10 with severe adhd and Hope who is 6 with Autism and ADHD (unmedicated).As far as services, it really depends upon the child, with my oldest Molly, who wasn't dx'd until she was 13, we have done extensive psychotherapy, meds, day treatment facilities, social skills groups - and honestly, she always goes back to exactly how she was before - she is difficult at best, and scary at worst. However - she also has abuse issues. With Hope, we have done play therapy, speech therapy, sensory integration stuff, ABA - she has made a huge amount of progress. We are in the process of moving to a very small town in the Ozarks,

which may sound like an extreme thing, but I am praying that the reduction in sensory overload, slower pace, and less worry about money and so on will make a difference for the kids.Wife to Jarrod - Retired Navy Bos'n and Merchant MarinerMom to Max, Molly, Sara and HopeAnd Ubermom to Rosie and Nina (doggies), Pikachu and Milo (kitties), 2 Hamsters (whose names apparently change daily), Buddy and Baby Girl - 2 full grown (2 foot) Bearded Dragons and Wulfgar aka Psycho Boy - a 3 month old Male Bearded DragonGail Africa <lilies@...> wrote: Hi Sara, welcome to the group. I have an almost 15 year old with Asperger’s, OCD, and Tourettes. He is a nice kid and doing well, considering a couple very rough years when he was 9 & 10 and ‘crashed’. He was almost 10 before he was diagnosed. Therefore, knowing now might be better for you and your son. Once your son is diagnosed you could just tell family/friends and tell them you will e-mail them a web site so they

might be able to understand your son’s challenges better. I don’t discuss my son much with my family, as they have always thought he was spoiled, and they really don’t care. Hopefully yours is different, but look for other support if they make things harder for you. Personally, if I had a young child I would look for school where the programming is geared to Asperger kids. Few and far between, but more and more I think. We are in Vermont which toots “inclusion”, which is not working by the way. Basically, aides are hired off the street, and there is no consistent, high quality programming. My son has been Home Schooled since he was 10. I just can not be positive about Public School programming and the student population of Public Schools. I’m sounding negative, but really your son can have a good life with the

right supports, programming. If I were you I’d schedule a few hours at your local school and see what you think. Find out ahead of time exactly what type of program your son would be in. You could give it a try, but don’t hesitate to go with your gut feeling and speak up if things don’t seem right. Ask any questions. Gail in Vermont www.tonyattwood.com Tony Attwood or O.A.S.I.S. Introduction Hi. My name is Sara and I have a son who is almost 4. He is currently being assessed for Asperger's Syndrome...and will likely be officially diagnosed in the next few weeks. I really don't know any parents locally that have children with AS....especially in his age group. I am hoping to meet other parents that have been through this whole process. I'm curious how and if you told friends/family/teachers .....and how it is best explained to others in general. I'd also like to know what kind of services you find to be the most (or least) helpful for your children. Thank you so much for your time. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.9/907 -

Release Date: 7/18/2007 3:30 PM No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM Life may not be the party we asked for - but while we're here, let's dance!

Looking for a deal? Find great prices on flights and hotels with FareChase.

[Guest guest]

Gail, I read your reply to Sara with the 4 yr old. My son is 16 and

sounds very similar to your son. He has had the same dx's in

addition to ADHD. It has been a challenge to navigate the school

system. My son has received home-bound instruction the past 2 years

but outside the home so he did not become more reclusive. We have

decided that the best option for our situation is to let him get his

GED. He cannot tolerate the HS setting. He does hope to try some

college classes.

My son was doing well until we moved back to IN and he got beat up at

a skate park by 3 bigger (non-skater) boys. We did press battery

charges but my son's life was changed.

I hope your son is doing well.

Lynda

>

>

>

> Hi Sara, welcome to the group. I have an almost 15 year old with

> Asperger's, OCD, and Tourettes. He is a nice kid and doing well,

> considering a couple very rough years when he was 9 & 10

and `crashed'.

> He was almost 10 before he was diagnosed. Therefore, knowing now

might

> be better for you and your son. Once your son is diagnosed you could

> just tell family/friends and tell them you will e-mail them a web

site

> so they might be able to understand your son's challenges better. I

> don't discuss my son much with my family, as they have always

thought he

> was spoiled, and they really don't care. Hopefully yours is

different,

> but look for other support if they make things harder for you.

> Personally, if I had a young child I would look for school where the

> programming is geared to Asperger kids. Few and far between, but

more

> and more I think. We are in Vermont which toots " inclusion " , which

is

> not working by the way. Basically, aides are hired off the street,

and

> there is no consistent, high quality programming. My son has been

Home

> Schooled since he was 10. I just can not be positive about Public

School

> programming and the student population of Public Schools. I'm

sounding

> negative, but really your son can have a good life with the right

> supports, programming. If I were you I'd schedule a few hours at

your

> local school and see what you think. Find out ahead of time exactly

what

> type of program your son would be in. You could give it a try, but

don't

> hesitate to go with your gut feeling and speak up if things don't

seem

> right. Ask any questions. Gail in Vermont HYPERLINK

> " http://www.tonyattwood.com/ " www.tonyattwood.com Tony Attwood or

> O.A.S.I.S.

>

> Introduction

>

> Hi. My name is Sara and I have a son who is almost 4. He is

currently

> being assessed for Asperger's Syndrome...and will likely be

officially

> diagnosed in the next few weeks. I really don't know any parents

> locally that have children with AS....especially in his age group.

I am

> hoping to meet other parents that have been through this whole

process.

> I'm curious how and if you told friends/family/-teachers .....and

how it

> is best explained to others in general. I'd also like to know what

kind

> of services you find to be the most (or least) helpful for your

> children. Thank you so much for your time.

>

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date:

> 7/18/2007 3:30 PM

>

>

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date:

> 7/18/2007 3:30 PM

>

[Guest guest]

Hi Gail,

Thank you so much for your reply. I really appreciate your suggestions on how to tell the family (with a good website email).....and thanks for the link. I'm going to start checking out any potential school programs that are geared toward Asperger's as well. Thank you for your time.

Sara

RE: Introduction

Hi Sara, welcome to the group. I have an almost 15 year old with Asperger’s, OCD, and Tourettes. He is a nice kid and doing well, considering a couple very rough years when he was 9 & 10 and ‘crashed’. He was almost 10 before he was diagnosed. Therefore, knowing now might be better for you and your son. Once your son is diagnosed you could just tell family/friends and tell them you will e-mail them a web site so they might be able to understand your son’s challenges better. I don’t discuss my son much with my family, as they have always thought he was spoiled, and they really don’t care. Hopefully yours is different, but look for other support if they make things harder for you. Personally, if I had a young child I would look for school where the programming is geared to Asperger kids. Few and far between, but more and more I think. We are in Vermont which toots “inclusion”, which is not working by the way. Basically, aides are hired off the street, and there is no consistent, high quality programming. My son has been Home Schooled since he was 10. I just can not be positive about Public School programming and the student population of Public Schools. I’m sounding negative, but really your son can have a good life with the right supports, programming. If I were you I’d schedule a few hours at your local school and see what you think. Find out ahead of time exactly what type of program your son would be in. You could give it a try, but don’t hesitate to go with your gut feeling and speak up if things don’t seem right. Ask any questions. Gail in Vermont www.tonyattwood.com Tony Attwood or O.A.S.I.S.

-----Original Message-----From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of Casey WellsSent: Wednesday, July 18, 2007 5:02 PMAutism and Aspergers Treatment Subject: Introduction

Hi. My name is Sara and I have a son who is almost 4. He is currently being assessed for Asperger's Syndrome...and will likely be officially diagnosed in the next few weeks. I really don't know any parents locally that have children with AS....especially in his age group. I am hoping to meet other parents that have been through this whole process. I'm curious how and if you told friends/family/teachers .....and how it is best explained to others in general. I'd also like to know what kind of services you find to be the most (or least) helpful for your children. Thank you so much for your time.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM

No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.6/902 - Release Date: 7/15/2007 2:21 PM

[Guest guest]

Dear , Kristie, (and , Gail, and Barbara),

Thank you so much for your replies. You have all made me feel very welcome here. I love how you all are so honest and real about what has and does go on in your children's lives. I had mentioned to in a private email about how this whole thing is kind of surreal for me because back in the day I used to tutor autistic children in their in-home programs (teaching the Lovaas method). I explained to her that I think I have been in denial for quite some time because even though I knew in my heart that my son had Asperger's......I listened to the untrained professionals that said that he didn't. It was about a couple months ago that I had him evaluated by an O.T. (who has had like 17 years experience of diagnosing sensory issues with children on the spectrum). She was the first one to tell me that she thought that he did have AS. It was at that point (after swallowing back the tears) that I realized that I had just been "prompting" my son along through all of his social deficits.....but he has never done it naturally on his own. She also pointed out his repetitive play, lining up toys, lack of eye contact, and so on. We discussed that since age 2 he started rhyming in almost a "savant" type of way (in her opinion).....things like "incense/coincidence," etc. I pretty much have been trying to not blame myself for not checking into this sooner. I mean in my gut I think I've known since he was like 2 or so. I am really working hard to get past the guilt and accept that this wasn't somehow my fault. I'm sure a lot of you have gone through this at one point or another. I also have realized that I really only have knowledge of the one type of program that I used to teach......and unless I do the tutoring myself (like 20 or more hours per week).....it is really hard to find quality trained people for the long haul. Oh, and also....I am by far an expert in this area! I really don't know anything about other options out there. You all have had wonderful feedback of what you feel is working and what is not....and what books and websites you think are the best....and how to tell family members about this. You are all fantastic! I have heard of something called RDI....which is some kind of play therapy????? I know that once my son is officially diagnosed that I will have some part in helping to decide what services would be best for him. Right now I think I am going to try for some type of behavioral intervention, O.T., and ?????? Does anyone know what RDI is...and/or have any feedback on it?

Thank you all so much for giving me such a warm welcome. I finally feel like I fit in with some parents that actually "get it."

Sara

RE: Introduction

Hi Sara,My name is , we are currently in Southern California and moving to Northern Arkansas on the 1st. I have four kids - Max who is almost 19 with ADHD/LD/SID - he and his girlfriend Jackie just came home to go to school at Arkansas State, Molly who is 15 with AS, OCD, Chronic Tics, BP, Sara Cait who is 10 with severe adhd and Hope who is 6 with Autism and ADHD (unmedicated).As far as services, it really depends upon the child, with my oldest Molly, who wasn't dx'd until she was 13, we have done extensive psychotherapy, meds, day treatment facilities, social skills groups - and honestly, she always goes back to exactly how she was before - she is difficult at best, and scary at worst. However - she also has abuse issues. With Hope, we have done play therapy, speech therapy, sensory integration stuff, ABA - she has made a huge amount of progress. We are in the process of moving to a very small town in the Ozarks, which may sound like an extreme thing, but I am praying that the reduction in sensory overload, slower pace, and less worry about money and so on will make a difference for the kids.Wife to Jarrod - Retired Navy Bos'n and Merchant MarinerMom to Max, Molly, Sara and HopeAnd Ubermom to Rosie and Nina (doggies), Pikachu and Milo (kitties), 2 Hamsters (whose names apparently change daily), Buddy and Baby Girl - 2 full grown (2 foot) Bearded Dragons and Wulfgar aka Psycho Boy - a 3 month old Male Bearded DragonGail Africa <lilieshughes (DOT) net> wrote:

Hi Sara, welcome to the group. I have an almost 15 year old with Asperger’s, OCD, and Tourettes. He is a nice kid and doing well, considering a couple very rough years when he was 9 & 10 and ‘crashed’. He was almost 10 before he was diagnosed. Therefore, knowing now might be better for you and your son. Once your son is diagnosed you could just tell family/friends and tell them you will e-mail them a web site so they might be able to understand your son’s challenges better. I don’t discuss my son much with my family, as they have always thought he was spoiled, and they really don’t care. Hopefully yours is different, but look for other support if they make things harder for you. Personally, if I had a young child I would look for school where the programming is geared to Asperger kids. Few and far between, but more and more I think. We are in Vermont which toots “inclusion”, which is not working by the way. Basically, aides are hired off the street, and there is no consistent, high quality programming. My son has been Home Schooled since he was 10. I just can not be positive about Public School programming and the student population of Public Schools. I’m sounding negative, but really your son can have a good life with the right supports, programming. If I were you I’d schedule a few hours at your local school and see what you think. Find out ahead of time exactly what type of program your son would be in. You could give it a try, but don’t hesitate to go with your gut feeling and speak up if things don’t seem right. Ask any questions. Gail in Vermont www.tonyattwood.com Tony Attwood or O.A.S.I.S.

& nsp;

-----Original Message-----From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of Casey WellsSent: Wednesday, July 18, 2007 5:02 PMAutism and Aspergers Treatment Subject: Introduction

Hi. My name is Sara and I have a son who is almost 4. He is currently being assessed for Asperger's Syndrome...and will likely be officially diagnosed in the next few weeks. I really don't know any parents locally that have children with AS....especially in his age group. I am hoping to meet other parents that have been through this whole process. I'm curious how and if you told friends/family/teachers .....and how it is best explained to others in general. I'd also like to know what kind of services you find to be the most (or least) helpful for your children. Thank you so much for your time.

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM

No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM

Life may not be the party we asked for - but while we're here, let's dance!

Looking for a deal? Find great prices on flights and hotels with FareChase.

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.6/902 - Release Date: 7/15/2007 2:21 PM

[Guest guest]

In a message dated 8/12/2007 9:04:08 A.M. Eastern Daylight Time,

viktoriya.ggdemireva@... writes:

Of course they do love me but I think they

can not feel how I feel inside.

Dear Viki,

Welcome to the group. I felt the same way with my family as you mentioned

until I finally wrote an email (they are all over the country) and included the

Spoon Theory (look at the Still's website for it or I can forward it to you

directly). It helped a ton. In fact, just the other day I sent it to a friend

who complained that his 80 year old father was " lazy " because he wouldn't do

some prescribed physical therapy after some surgery that he had, which was

after several other surgeries. The person who wrote the spoon theory was

brilliant in explaining what it feels like to look OK but not be OK. Hope this

helps.

Carole from Hollywood FL

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

In a message dated 8/12/2007 9:04:08 A.M. Eastern Daylight Time,

viktoriya.ggdemireva@... writes:

Of course they do love me but I think they

can not feel how I feel inside.

Dear Viki,

Welcome to the group. I felt the same way with my family as you mentioned

until I finally wrote an email (they are all over the country) and included the

Spoon Theory (look at the Still's website for it or I can forward it to you

directly). It helped a ton. In fact, just the other day I sent it to a friend

who complained that his 80 year old father was " lazy " because he wouldn't do

some prescribed physical therapy after some surgery that he had, which was

after several other surgeries. The person who wrote the spoon theory was

brilliant in explaining what it feels like to look OK but not be OK. Hope this

helps.

Carole from Hollywood FL

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Hi Viki

You are very welcome to our group and hope we can help where others may not

understand. It still appears that because quite often we look perfectly

well no-one can associate a well looking person with maybe feeling so

poorly. I hope you are managing to keep up with your 3 yr.old as they have

so much energy don’t they.

Anyway take care

Best wishes

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of gviktoria

Sent: 12 August 2007 13:56

To: Stillsdisease

Subject: Introduction

Hello everybody,

My name is Vikroria, but my friends call me Viki, and I am the new

member of the group. Please, let me introduce myself.

I am 29, married, have 3-year-old son. I have been diagnosed with

Still for 2 years. Before these 2 years the doctors needed more than

a year to give me that diagnosis. I have experienced all the

symptoms of Stills and, unfortunately, it seems as if it wont stop.

I am on steroids - 2 years and on the one hand I still have joint

pain, sudden loss of muscle power and so on , on the other hand the

side effects of steroids make me feel depressed and angry and so on.

I am sure you know what I mean. There are a lot of questions that

disturb me and I want to ask you. One of the most disturbing thing

is that I can not feel support and understanding in the people who

love me most - my family. Of course they do love me but I think they

can not feel how I feel inside.

Reading all the e-mails I have received from Stillsdisease droup,

something impressed me much - you are really a big family!!! I wish

I would be a part of it.

I am thinking of Danni and she will be in my prayers.

Hugs,

Viki.

[Guest guest]

Hi Viki

You are very welcome to our group and hope we can help where others may not

understand. It still appears that because quite often we look perfectly

well no-one can associate a well looking person with maybe feeling so

poorly. I hope you are managing to keep up with your 3 yr.old as they have

so much energy don’t they.

Anyway take care

Best wishes

Joan U.K.

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of gviktoria

Sent: 12 August 2007 13:56

To: Stillsdisease

Subject: Introduction

Hello everybody,

My name is Vikroria, but my friends call me Viki, and I am the new

member of the group. Please, let me introduce myself.

I am 29, married, have 3-year-old son. I have been diagnosed with

Still for 2 years. Before these 2 years the doctors needed more than

a year to give me that diagnosis. I have experienced all the

symptoms of Stills and, unfortunately, it seems as if it wont stop.

I am on steroids - 2 years and on the one hand I still have joint

pain, sudden loss of muscle power and so on , on the other hand the

side effects of steroids make me feel depressed and angry and so on.

I am sure you know what I mean. There are a lot of questions that

disturb me and I want to ask you. One of the most disturbing thing

is that I can not feel support and understanding in the people who

love me most - my family. Of course they do love me but I think they

can not feel how I feel inside.

Reading all the e-mails I have received from Stillsdisease droup,

something impressed me much - you are really a big family!!! I wish

I would be a part of it.

I am thinking of Danni and she will be in my prayers.

Hugs,

Viki.

[Guest guest]

Hi Viki,

Welcome to the family. I am , 35 year old nursing student in western NC.

I am married with a 2 year old son. Hope you like it here!

</HTML>

[Guest guest]

Hi Viki,

Welcome to the family. I am , 35 year old nursing student in western NC.

I am married with a 2 year old son. Hope you like it here!

</HTML>