confused and scared

[Guest guest]

I agree with both sides, depending on how 's day is going! Sometimes his

behavior is a 'Gift from God' but other times it is more like 'the curse of

hell!' Especially when there is biting or fecal smearing involved! Let's have

anyone say THAT is a GIFT!!!

is quirky, and loving, and smart. Those things can put fuel in my tank

when I'm running on empty......unless they are being used 'for the dark side.'

(not the loving part of course) It all depends. That is life no matter if the

subject is Aspergers or not.

I too spend a lot of time trying to not focus on the What if's of What if he

doesn't fall in love or get married or have kids, or get a job or go to college

or make friends or move out of the house or .................. the million other

things that lie between here and eternity. I get really angry, really sad, and

really overwhelmed. I had a family member (my husband's uncle who doesn't have

children due to his wife having an emergency hysterectomy in 1984) tell me that

it wasn't ANY OF MY BUSINESS if didn't grow up and get married and have

kids! That it wasn't my RIGHT to even CARE about it! Talk about pissing me off.

And hurting my feelings. I'm his MOMMY! I carried him through a complicated

pregnancy, quit work to avoid a miscarriage, and stayed home with him since

because of his special needs...and I don't have the RIGHT to be pissed or scared

or worried about his future choices?????? & @#^ & *%@@@ Am I the only one who

thinks that statement is insensitive and chauvinistic??????

So I just say roll with it. It is a grieving process. There's denial and anger,

and maybe for some people (me included some days) the only way to truly feel

'ok' is to just try to believe that this child, this disability, this struggle

is something that is higher than us mere mortals. It is kind of like the tide

for me. Sometimes I'm overwhelmed by a peace about it and other days I think

" how much longer until I lose my mind and need to be medicated to just get up in

the morning? " I'm human, and I try to fight to get to the peace filled days. So

I never have to see the one where I go to a Dr and say " I think I need help. "

If giving myself some big speech about how " God gave to me for a reason,

and I'm special because he chose ME to be his Mommy and go down this path with

him " is what it takes to keep me from going over the brink....then for THAT day,

that is what I'll cling to if it works for the moment. Then I can be pissed and

scared again the next day. Whatever it takes to just keep moving and fighting,

and living.

Well, enough venting, and moaning... is up from her nap and there are too

many things to do around here!

Laramy

Re: ( ) Confused and Scared

justdanecrazy00 <JustDaneCrazy@...> wrote:

I am a little worried that I may be posting to the wrong group. I

read a couple posts last night and one said something about

Asperger's being a gift from God and I don't feel this way. I am

devestated that he might struggle through his life. So if I am in

the wrong spot would someone please tell me so and maybe where I

should be?

I am overwhelmed, I am scared and I am so sad that he may be an

Asperger child.

Sorry to ramble on but I do feel a little better. Maybe I will go

get the book off the front seat of the car and bring it inside and

put it on the table.

Thank you for having a place that allowed me to say all this.

I don't think this is a gift from God either, lol. Some people like to think

that, though. You are in the right place and feel free to post and stay as long

as you like. I would encourage you to read that book! What is scarey is not

knowing the facts. Once you do, you can formulate a plan and deal with it.

Right now, everything is a " maybe " and you are caught in limbo.

Remember something we tell people all the time here - your ds is the same

child before the dx that he is after the dx. You just have more information and

can find help for his problems, if necessary. Hang in there!

Roxanna

Always Remember You're Unique

Just Like Everyone Else

---------------------------------

for Good

Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Oh my gosh, , you sould like you are talking about my , now

12 year old son. In Kindergarten, it was horror. He went from being

very talkative, very little outbursts, to the complete opposite. It

was heartbreaking. He seemed to change before my very eyes.

*hugs*

We

> > recently received a tentative diagnosis of Aspergers

> > for our 7

> > year old son. I had never heard of it before. I

> > have scoured online

> > for information about the syndrome and some of it

> > seems to fit my

> > child but some of it does not.

> >

> > He has always been an introvert in a family of

> > extroverts. He is

> > quite and shy. He has done odd things socially and

> > occasionally

> > blurts out inappropriate things at inappropriate

> > times. He wants to

> > play with children but ends up being cast aside

> > which leads to more

> > isolation and lonliness. He plays on the outside

> > of the group of

> > children or along side a single child. He was

> > described by his

> > current teacher as " wierd " and she also stated

> > that he baffles her.

> > She stated she has never met a child like him. He

> > is fixated on

> > cars/trucks and will play with them for hours on

> > end. He is fixated

> > with video games. He has a hard time holding a

> > conversation without

> > talking about one of these two things.

> >

> > He does not however have outbursts that some

> > describe. He is quiet

> > and sensitive. He recently started slamming his

> > door when he is

> > angry and I have let him do this because some

> > emotion out of this

> > child was better than none but I do not consider

> > this a melt down or

> > an outburst. He makes fair eye contact, not great

> > to strangers but

> > good to his family. We are a gypsy type of family

> > (military) and we

> > move a lot and he seems to adjust to it fairly

> > well. We moved three

> > months ago and he did sob for about an hour when

> > we told him but I

> > thought this was normal. It takes him a long time

> > to find friends

> > and we thought he was upset about this aspect. His

> > father is

> > deployed a lot and is currently out of the country

> > and has been for

> > 5 months. He seems to do okay with this as long as

> > he has me.

> >

> > I have always been told by family and friends that

> > I babied him to

> > much and I thought maybe he acted this way because

> > I did that. I

> > thought maybe I did not socialize him enough. I

> > thought maybe that

> > because he was the youngest of four children and

> > quiet that I

> > overlooked him to much. His sisters are loud and

> > demanding and he is

> > quiet and in the background and the loud gets the

> > attention first

> > around here. There was always a sneaking feeling

> > in the back that

> > something was not right with our son but I would

> > tell myself that I

> > need to get him out more. That I need to not let

> > him spend so much

> > time in his room, that once I buckled down and

> > found the time that I

> > would lift him up out of that world he lived in.

> >

> >

> > I bought The Asperger Syndrome book that was

> > recommended to me by

> > the psychiatrist. That was hard to do. It still

> > sits on my passenger

> > seat of my van. As if reading it will make it real

> > and right now I

> > just want to delay facing any fact that our son

> > may be different,

> > just for a moment or two. I feel like I planned a

> > trip to Hawaii

> > and got on the plane and someone diverted it to

> > the North Pole and

> > forgot to tell me.

> >

> > I have teachers and school counselors talking

> > about IEP's and

> > testing and special education classrooms and I am

> > frozen with fear.

> > I have no idea what to do. I have no idea what

> > steps to take for the

> > sake of my child. If his teacher has never seen a

> > child like my son

> > how in the world will they help him at school? How

> > do I know they

> > are doing the right thing by him? How will they

> > establish anything

> > when a difinitive diagnosis has yet to be made?

> >

> > I am a little worried that I may be posting to the

> > wrong group. I

> > read a couple posts last night and one said

> > something about

> > Asperger's being a gift from God and I don't feel

> > this way. I am

> > devestated that he might struggle through his

> > life. So if I am in

> > the wrong spot would someone please tell me so and

> > maybe where I

> > should be?

> >

> > I am overwhelmed, I am scared and I am so sad that

> > he may be an

> > Asperger child.

> >

> > Sorry to ramble on but I do feel a little better.

> > Maybe I will go

> > get the book off the front seat of the car and

> > bring it inside and

> > put it on the table.

> >

> > Thank you for having a place that allowed me to

> > say all this.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hello everybody! My name is Yuliya and my son, Maxim (10 years old)

was diagnosed with Asperger last week. We moved from Russia to the

USA when he was 2.5 years old. I placed him into the Preschool

program, so he could learn English before he goes to Kindergarten.

Every one had noticed that he was " different " from other children,

but only blamed his lack of English language proficiency. He

wouldn't communicate with anybody nor participate in any group

activities. He was, and still is, living in his own " bubble " .

Teachers didn't see it as the problem and everyone, including me,

believed that when he learns English, he will be more communicative,

sociable etc. The years passed and not much has changed. He is a

very intelligint child, however his interest is only in science

(electricity and technology). He was misdiagnosed with ADHD at age 7

and was put on Strattera and Welbutrin for over a year. That was a

nightmare! It didn't work, yet made things much worse. At the age 9

he got an IEP at school (memory problem - his short term memory is

almost shut; and ADHD). At the same time we took him to a

psichologist who raised concerns about Max being an Asperger child.

But nothing was explained to us and the term of AS didn't make any

sense...I totally denied everything because I thought that he

was " normal " . By not facing the problem, I was hurting myself and my

dearest son...I haven't realized until our last evaluation where the

psychologist explained what AS was about. I don't think I could

sleep that night...It still hurts when I think about the time I've

lost trying to discipline my son instead of helping him!!!

I am crying for help!!! Would someone help me understand and learn

what possible resources are there available for my son? Therapy???

Medications? Vitamins? Diet? Would it be better if we placed him in

private school rather public school with so much frustration and

teasing? Any advice would be very helpful!!!!Thanks and have the

greatest day:-)

[Guest guest]

Hi Yulia,

Where do you live? People on the list may be able to suggest resources

based on where you live.

My daughter spent a year in St. sburg and loves it. Since she

graduated from college, she works as a bilingual (Russian-English)

legal secretary in Washington, DC.

Unfortunately, there's no easy answer to Asperger's. Some children have

co-morbid depression with Asperger's, and those children benefit from

an antidepressant; and some children have co-morbid ADHD, and those

children might benefit from stimulant medication. Sociial skills

therapy is beneficial for almost all children with Asperger's, as is

speech therapy that focuses on pragmatics (pragmatics is " social

speech " ). Many children with AS also have poor motor control -- large

motor, small motor, or both. Those children benefit from occupational

therapy. It's worth getting your school district to okay an IEE

(Independent Educational Evaluation). That's an outside evaluation that

the school district pays for. That says that you disagree with the

school district's assessment of your child, and that you want an

independent assessment. The district has to pay. I'm rambling a bit.

If I'm not making sense, feel free to e-mail, and I'll try to explain

better.

Liz in San Diego

On May 9, 2006, at 12:15 PM, yuliyapoe wrote:

> <snip>

> I am crying for help!!! Would someone help me understand and learn

> what possible resources are there available for my son? Therapy???

> Medications? Vitamins? Diet? Would it be better if we placed him in

> private school rather public school with so much frustration and

> teasing? Any advice would be very helpful!!!!Thanks and have the

> greatest day:-)

[Guest guest]

Hi Liz!

Thank you so MUCH for your help and it made a lot of sense! I haven't

even thought about speech and ocupational therapies. Especially the

speech one....we always thought that the problems he has (not

understanding jokes, idioms etc, taking everything literally) as a

result of his bilingulism (even though he doesn't speak Russian, but

understand pretty well). Also, he is so clumsy and obviously doesn't

belong to any sports (he has problems wyth catching or throwing balss

etc). I will definitely think of therapy:-)

We live in Front Royal, VA (about 60 miles away from DC). It's a vere

rural area, and not many people have heard of AS. Also, as I

mentioned before, it's so hard to pinpoint what is wrong when your

child went through a cultural shock, learning a different language,

new family etc. But now, reading more anfd more about this syndrome,

I am like a new mother to my son... with more patience.

I've never heard about IEE - thanks for this great info!

Do you think that neurological exam would help any? Brain scan?

WOW! That's so cool that your daughter can speak Russian...It is a

VERY hard language to learn. I love speaking English; I started to

learn 7 years ago and instantly fell in love with it:) In fact, I am

teaching English as a Second Language in VA Public School.

By the way, St sburg is the most beatiful city I have ever

been...I was there once a long time ago... I am Russian, but was born

in Uzbekistan, so I have never lived in Russia:(

Anyway, thanks a bunch for your help:):) and please send your

daughter " privet " :)

[Guest guest]

Dear Yulia,

I still have to explain some jokes and idioms to my 18 year old son! He

has gotten much better about this, after much speech therapy.

We had a neuropsychologist do 's IEE. She did a full scale

educational evaluation. As for a neurologist, they can diagnose

Asperger's also. Other people on the list have found their neurologists

helpful. I didn't find our neurologist particularly helpful in terms of

the Aspergers. was having seizures that meant that he was

blacking out for a few seconds here and there about a hundred times a

day. So the neurologist was helpful with that.

Brain scans won't help any with Asperger's, unfortunately. At this

time, there's no way to diagnose Asperger's, except by a checklist of

symptoms.

My daughter has a " thing " for the former Soviet republics. She was in

Georgia (the country) last year, and loved it. She got very, very sick

while she was there, and had to stay longer than she planned. (She got

a huge blood clot in her leg) She got excellent medical care while she

was there, and had to negotiate it all in Russian. She stayed with a

wonderful Georgian family, with a mother who is a cardiologist and took

wonderful care of her. I will be forever in their debt. What language

do they speak in Uzbekistan (in addition to Russian)?

Take care,

Liz

On May 10, 2006, at 8:32 AM, yuliyapoe wrote:

> Hi Liz!

> Thank you so MUCH for your help and it made a lot of sense! I haven't

> even thought about speech and ocupational therapies. Especially the

> speech one....we always thought that the problems he has (not

> understanding jokes, idioms etc, taking everything literally) as a

> result of his bilingulism (even though he doesn't speak Russian, but

> understand pretty well). Also, he is so clumsy and obviously doesn't

> belong to any sports (he has problems wyth catching or throwing balss

> etc). I will definitely think of therapy:-)

>

> We live in Front Royal, VA (about 60 miles away from DC). It's a vere

> rural area, and not many people have heard of AS. Also, as I

> mentioned before, it's so hard to pinpoint what is wrong when your

> child went through a cultural shock, learning a different language,

> new family etc. But now, reading more anfd more about this syndrome,

> I am like a new mother to my son... with more patience.

> I've never heard about IEE - thanks for this great info!

> Do you think that neurological exam would help any? Brain scan?

>

> WOW! That's so cool that your daughter can speak Russian...It is a

> VERY hard language to learn. I love speaking English; I started to

> learn 7 years ago and instantly fell in love with it:) In fact, I am

> teaching English as a Second Language in VA Public School.

>

> By the way, St sburg is the most beatiful city I have ever

> been...I was there once a long time ago... I am Russian, but was born

> in Uzbekistan, so I have never lived in Russia:(

>

> Anyway, thanks a bunch for your help:):) and please send your

> daughter " privet " :)

>

>

>

>

>

>

>

>