I'm new and sad

June 30, 2006

Hi everyone,

My name is and my 8 year old son, , was just diagnosed with

Asperger's syndrome. I've been online pretty much constantly since

the diagnosis trying to learn as much as I can about it. I am feeling

SO many things right now. Part of me is having a hard time with it,

wanting to just deny it and the other part of me is very relieved to

finally have some sort of diagnosis. Do you all know what I'm talking

about? So......anyone have any advice for me? There are so many

books on the subject but does anyone know of a really good, helpful

one? hasn't started therapy yet, nor have his father and I. I

just feel like I want to get started helping him right away. He has

felt so bad about himself for so long. OK, I'm done whining for now!

I just wanted to " talk " to someone who is going through the same

thing. Thanks for listening.

July 1, 2006

Hey ,

My son also 8 had his DX this year. I was in such denial for a long

time. I know just what you are feeling. I was on the web and

reading every thing I could get my hands on! The library was a geat

place for me as I just put in Aspergers and put almost every book on

hold. I like Tony Attwoods " Asperger Syndrom " and " The OASIS Guild

to Asperger Syndrom " I also Loved " Freak, Geaks, and Asperger

syndrom " as it was writen by a 13 year old boy with AS. Really gets

you in to there head and made me feel that haveing AS is not so

bad. After all its not a death sentince.

Some times I find myself up all night online reading more and more.

Avery (our boy) I going to his first social group next week. I'm so

excited. I like to think as AS as a gift if you think about it

where would we be with out people with AS. IN THE DARK and no

Windows SO dont be so said . Our son is such a JOY. Get him

involved with the local AS groups. We just came home from our local

Game Club where Kids with AS get togeather and play Games. He was

so pumped up and happy to hang around other kids just like him.

Dont let the school walk all over you get him all the help he

needs. Look into the local parent to parent group and get a parent

partner to help with the school and his IEP or 504.

Dont forget your son will reflect your sadness sooooo make AS a

wonderful thing with a few small bumps. He will think he is

wonderful and will be so proud to make you happy!!

We have all been there and had hard days.... I just cry in the

shower. Its really refreshing. So go take a shower and

then Hug your boy really hard. (they hate that

ALL the BEST,

>

> Hi everyone,

>

> My name is and my 8 year old son, , was just diagnosed

with

> Asperger's syndrome. I've been online pretty much constantly

since

> the diagnosis trying to learn as much as I can about it. I am

feeling

> SO many things right now. Part of me is having a hard time with

it,

> wanting to just deny it and the other part of me is very relieved

to

> finally have some sort of diagnosis. Do you all know what I'm

talking

> about? So......anyone have any advice for me? There are so many

> books on the subject but does anyone know of a really good,

helpful

> one? hasn't started therapy yet, nor have his father and

I. I

> just feel like I want to get started helping him right away. He

has

> felt so bad about himself for so long. OK, I'm done whining for

now!

> I just wanted to " talk " to someone who is going through the same

> thing. Thanks for listening.

>

July 1, 2006

Welcome ..you will have lots of companionship on this list! We have

all been there " doing " that...If you want to tell us a little bit more about

your son, we could share some things that have worked for us. Pam

July 1, 2006

Hi . I'm new to this, too. I'm actually not sad, because my son

hasn't changed due to the diagnosis, but I'm definitely relieved that

I now know why he does the things he does and has problems with the

things he does. It has helped me considerably to read...a lot. I now

understand him a lot better and it's helped me to react more

appropriately, etc.

The books I found most helpful are:

1. The OASIS Guide to Asperger Syndrome

2. Asperger's Syndrome: A Guide for Parents and Professionals (Tony

Attwood)

3. Asperger Syndrome and Difficult Moments: Practical Solutions For

Tantrums, Rage And Meltdowns

4. Asperger Syndrome and the Elementary School Experience: Practical

Solutions for Academic & Social Difficulties

I've also read:

" The Everything Parent's Guide To Children With Asperger's Syndrome "

-and-

" Kids in the Syndrome Mix of ADHD, LD, Asperger's, Tourette's,

Bipolar, And More! "

I hope this helps.

Debbie (in NJ)

July 1, 2006

Thank you to everyone who wrote words of encouragement! Let's see...I

started noticing something a little " off " with when he started

Kindergarten. He was tested and diagnosed with ADD so we tried

Stratterra and then Concerta. Neither one helped him at all and plus

made our home life awful. So we just went on confused for the next 2

years. This last year in 2nd grade for him was really difficult. He

hated school and his behavior at home seemed to get worse every day.

So we took him to a different doctor and she diagnosed him with AS.

He is of average intelligence and his grades are also average. But it

takes a LOT of work for him to get those average grades. I have to

help him for a long time at home, every afternoon. At home, he can be

the sweetest, most loving little boy ever. But the next moment if

you " set him off " , he's absolutely out of control. He shouts and

yells at the top of his lungs and talks in such a nasty, mean voice.

is 8 and we also have a 10 year old boy, Tyler. They fight

constantly. We all feel like we're walking on eggshells all the

time. Like I said, none of us has started therapy yet, we'll start

next week. But I'm hoping the psych. will give us some tips for

dealing with him better and also help him to feel better about

himself. His main issues right now are depression, anxiety, and very

low self-esteem. Wow, sorry for such a long e-mail!

>

July 1, 2006

Yeah, I have that Tony Attwood book too. It seems very good. I also

just started reading

A Parent's Guide to Asperger Syndrom and High Functioning Autism. How

to Meet The Challenges and Help Your Child Thrive. -Sally Ozonoff,

Geraldine Dawson, McPartland (The Guilford Press)

I just started but it seems promising.

Amber

>

> Hi . I'm new to this, too. I'm actually not sad, because my son

> hasn't changed due to the diagnosis, but I'm definitely relieved that

> I now know why he does the things he does and has problems with the

> things he does. It has helped me considerably to read...a lot. I now

> understand him a lot better and it's helped me to react more

> appropriately, etc.

>

> The books I found most helpful are:

> 1. The OASIS Guide to Asperger Syndrome

> 2. Asperger's Syndrome: A Guide for Parents and Professionals (Tony

> Attwood)

> 3. Asperger Syndrome and Difficult Moments: Practical Solutions For

> Tantrums, Rage And Meltdowns

> 4. Asperger Syndrome and the Elementary School Experience: Practical

> Solutions for Academic & Social Difficulties

>

> I've also read:

> " The Everything Parent's Guide To Children With Asperger's Syndrome "

> -and-

> " Kids in the Syndrome Mix of ADHD, LD, Asperger's, Tourette's,

> Bipolar, And More! "

>

> I hope this helps.

>

> Debbie (in NJ)

>

July 1, 2006

Yeah, I'm afraid of school myself. He starts in the fall and even

though I've always known he wasn't like other kids (literally almost

from birth) I never sought a diagnosis because we just thoguht " we can

adjust. We can make this work. " Which has been alright. We sought

advice in other places like, " Raising your strong willed Child. " But

now that he's going to school we started to worry that those problems

that we have worked around since birth might not be something that his

teachers could or would work around. And that's when we started

looking for an answer. But we didn't think we had to look too far

because AS runs deep in both sides of our family. For me, it sounds

silly, but it has worked to just look at his terrible melt down in the

grocery store or whatever and say, " we will figure something out. "

Which is probably just glossing over the issue but it has worked for

me (as have so many other episodes of denying reality ;-)) really

Ithink it's more like going " This too shall pass and maybe tommorow

will be better. " But then the day after that will not be. We have

found that he has good and bad days. And when he's doing good he's as

sweet as can be but the bad days are a nightmare.

Amber

>

> Thank you to everyone who wrote words of encouragement! Let's see...I

> started noticing something a little " off " with when he started

> Kindergarten. He was tested and diagnosed with ADD so we tried

> Stratterra and then Concerta. Neither one helped him at all and plus

> made our home life awful. So we just went on confused for the next 2

> years. This last year in 2nd grade for him was really difficult. He

> hated school and his behavior at home seemed to get worse every day.

> So we took him to a different doctor and she diagnosed him with AS.

> He is of average intelligence and his grades are also average. But it

> takes a LOT of work for him to get those average grades. I have to

> help him for a long time at home, every afternoon. At home, he can be

> the sweetest, most loving little boy ever. But the next moment if

> you " set him off " , he's absolutely out of control. He shouts and

> yells at the top of his lungs and talks in such a nasty, mean voice.

> is 8 and we also have a 10 year old boy, Tyler. They fight

> constantly. We all feel like we're walking on eggshells all the

> time. Like I said, none of us has started therapy yet, we'll start

> next week. But I'm hoping the psych. will give us some tips for

> dealing with him better and also help him to feel better about

> himself. His main issues right now are depression, anxiety, and very

> low self-esteem. Wow, sorry for such a long e-mail!

>

> >

>

July 1, 2006

Hi!

I know exactly what you mean: relieved and sad.

Wanting to deny it, but at the same time relieved that

you have an explanation for some things.

After feeling sad, I really do feel relieved. For

myself, and for him (although he doesn't know it).

Everyone around him treats him differently, now that

they know he's got Aspberger's. It's not that he's

" just weird " , or " just a behavior problem " .

Unfortunately, though I hate to admit it, it's also

true of my husband, daughter and I. It really is

relieving for him.

The best advice I'd have on this subject: everyone

with this diagnosis is different: they act and do

different things. More than people realize. People

should accept him and what he does, without being

frustrated that he's not acting as someone with

Aspberger's " should " .

Take care. I know the initial diagnosis is somewhat of

a shock.

Hope this helps.

- Adrienne

--- sparkpuppypup <mktjman@...> wrote:

> Hi everyone,

>

> My name is and my 8 year old son, , was

> just diagnosed with

> Asperger's syndrome. I've been online pretty much

> constantly since

> the diagnosis trying to learn as much as I can about

> it. I am feeling

> SO many things right now. Part of me is having a

> hard time with it,

> wanting to just deny it and the other part of me is

> very relieved to

> finally have some sort of diagnosis. Do you all

> know what I'm talking

> about? So......anyone have any advice for me?

> There are so many

> books on the subject but does anyone know of a

> really good, helpful

> one? hasn't started therapy yet, nor have his

> father and I. I

> just feel like I want to get started helping him

> right away. He has

> felt so bad about himself for so long. OK, I'm done

> whining for now!

> I just wanted to " talk " to someone who is going

> through the same

> thing. Thanks for listening.

>

__________________________________________________

July 1, 2006

Hi!

I forgot to say that " The Explosive Child " by Ross

Greene helped us tremendously.

- Adrienne

--- ppanda65@... wrote:

> Welcome ..you will have lots of companionship

> on this list! We have

> all been there " doing " that...If you want to tell us

> a little bit more about

> your son, we could share some things that have

> worked for us. Pam

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

July 1, 2006

Hi ,

I'm new at this site too. I've also combed the universe trying to

learn all I can about AS. My son has not been formally diagnosed,

but a schoolteacher at our church - that was her first guess after

knowing my child the last 6 years- I respect her observations. Also

the one MD I really trust ( Family Practice - subspeciality ADD )

feels he's AS. This docs partner in the practice is also a mom with

an AS son. This is the first MD to spend time with us, read my

summary I presented her prior to our initial appointment, and

confirmed to me that every day with a child with these needs is a

HUGE challenge. Everyone else " sees " my son " looking " NT, so their

first impression is that he is a " bad " boy with a mom who can not

control him- and there is not much support available. This awesome

FP MD ordered an OT consult that was quite " eye-opening " to me. My

son's OT consult has #19 goals, and the OT reassures me he's not NT,

and I'm not just a mom looking for problems. Also most of our

problems do occur at home as he is usually able to " hold it in " when

at school and in public. However, he's had some pretty strange

mannerisms during church worship, and even waiting for the OT eval

the other day he constantly was asking me " how much longer " ?, and

getting frustrated because the pages in the magazine he was trying to

look at were wrinkled and he could not get them to straighten out.

Then other folks do shoot you strange looks. I just kept reminding

myself- while he was " stressing " over the magazine pages- that

that's why we were there,for potential help.

He was just discharged this past Thursday from a teaching hospital-

supposedly skilled in PDD- inpatient child psych unit. We were there

for a comprehensive evaluation and his self-injury behaviors. They

only listed Asperger's by history stating he did not fill all the

criteria. His social behavior on the unit was noted to be very

abnormal, but they instead say r/o selective mutism and social

phobia, but then they also add sensory intergration deficits to his

list of diagnoses. Sounds like AS to me !!

The incompetent social worker on the unit told me basically he was

NT, and I needed to give him " consequences " . I told her , we had

tried that method as well as many others, likewise we would not be

sitting in an inpatient child psych unit having this discussion.

Here's the kicker... she told me to pick 3 behaviors most concerning -

I picked self-injury, tantruming, and agressive behaviors toward

myself or his sister. This lady told me to give him a consequence-

such as cleaning out garbage cans- for any of the above behaviors. I

then asked her if I was to actually take his hand and make him clean

the garbage can or actually complete any consequence I assigned him.

She said NO. She said he must do it all on his own, and until the

consequence is completed he has NO family interaction, no toys, and

to be fed only PBJ and water until he completes the assigned

consequence w/o supervision. I told her she must realize my son will

tantrum again if asked to complete a consequence- he really has

problems organizing and beginning projects without any guidance- so

he would only " rack up " consequences AND HAVE no family interaction

or food for months. She stressed I need to make what are now

considered " my problems " into " his problems " . She told him he did not

want to control his behaviors so he was not doing it. Funny, my son

agreed this eval because he does not like his behaviors either. She

even told me if he had not performed the assigned consequences he

would have to PAY FOR his own babysitter while the rest of the family

went on any errand or excursion. Well my son has no income, and if

he is also depressed- I suspect BP with cycling I have seen- I think

this proposed " consequence " plan-theory would be very detrimental to

his emotional and physical well-being. However, this fruitcake tells

me , do it , it will work, and then also sugessts a book to read that

will solve our problems. Maybe for an NT kid, not my son- it's

downright abusive-and there have to be other ways. Talked to another

MOM who saw same SW with her son- and our concensus is she is a

fruitcake. Even the attending pdoc I finally met on the day of his

discharge rolled her eyes as if to say don't do THAT with your kid,

he has definite needs and needs special resources. Even though they

would not formally dx. AS, this pdoc did admit he has

definte " issues " and did offer her services if needed anytime in the

future. That was the only " positive " of this hospital experience.

I'm planning on somehow videotaping some meltdowns to let-actually

show this pdoc what can happen at home. Of course he " held it in "

while he was on the unit, and they observed no melt-downs or rages

and they refused to provoke him.

Tyler's mom- Jullie ?, understands.

Kim

CJ , 9.5, ADD?/AS?/COBP Abiify, Tenex, Metadate ER, now Prozac

Kayleigh 8, NT

July 1, 2006

Thanks for the kind words. Yes, the initial diagnosis was definitely a

shock for me. I'm not a person who would ever " stick my head in the sand "

so to speak. I am straightforward and just wanted answers, no matter what

they were. So it surprised me to feel so much denial.

A few years ago, I checked out a book from the library that talked about

ADHD, obsessive compulsive disorder, oppositional defiant disorder, autism,

and aspergers. Well, I skipped right over the autism part and the first

sentence I read about aspergers said that it was " high functioning autism " ,

so I skipped over that too! I thought to myself that certainly isn't

autistic! So when the psychologist said it's aspergers, I was like NO WAY!

I'm feeling better about it now, a couple of days later. He is still the

same sweet little boy he always was. It's just that now I know he's not

just a brat or acting strange. I also used to think that it was my fault,

like I'm not being a good parent or something. My husband and I would

always say that we needed Supernanny! But now I realize that there is more

going on with him than just bad behavior.

What we have the hardest time with is the complete changes in his behavior.

One minute he is smiling and loving, the next he is like a devil child! It

s like a flip of a switch. It's like we're walking on eggshells so as not

to set him off. Is this typical with AS?

-- everyone

with this diagnosis is different: they act and do

different things. More than people realize. People

should accept him and what he does, without being

frustrated that he's not acting as someone with

Aspberger's " should " .

Take care. I know the initial diagnosis is somewhat of

a shock.

Hope this helps.

- Adrienne

--- sparkpuppypup <mktjman@...> wrote:

> Hi everyone,

>

> My name is and my 8 year old son, , was

> just diagnosed with

> Asperger's syndrome. I've been online pretty much

> constantly since

> the diagnosis trying to learn as much as I can about

> it. I am feeling

> SO many things right now. Part of me is having a

> hard time with it,

> wanting to just deny it and the other part of me is

> very relieved to

> finally have some sort of diagnosis. Do you all

> know what I'm talking

> about? So......anyone have any advice for me?

> There are so many

> books on the subject but does anyone know of a

> really good, helpful

> one? hasn't started therapy yet, nor have his

> father and I. I

> just feel like I want to get started helping him

> right away. He has

> felt so bad about himself for so long. OK, I'm done

> whining for now!

> I just wanted to " talk " to someone who is going

> through the same

> thing. Thanks for listening.

>

__________________________________________________

July 1, 2006

, eliminate the fruit cakes as much as possible. Welcome! Pam

July 1, 2006

In a message dated 7/2/2006 12:50:29 AM Eastern Daylight Time,

mktjman@... writes:

It's like we're walking on eggshells so as not

to set him off. Is this typical with AS?

In my experience YES. Pam

July 2, 2006

Hi ,

I can relate to the sadness you are talking about. I felt that too. My son was

just diagnosed as well. I felt like I went through a period of what I would say

almost mourning. Not as much for my son but more for the life I had imagined for

him. It was really difficult. The only thing I can say now is that I am feeling

a kind of relief lately. It feels good to have a name for it. I also am thankful

for such a unique child. He brings so much joy into our lives! The book our

specialist recommended that I read was called " the curious incident of the dog

in the night time " I am pretty sure it was written by Mark Hadden. I really

enjoyed it because it was written through the eyes of a teen boy with

asperger's. It gives you a look into their minds and thoughts. I loved it! It

doesn't give you very much scientific info but a lot of understanding. I hope

you feel better soon:) Hang in there!

( ) I'm new and sad