Re: Do you mind doing me a favor?

[Guest guest]

In a message dated 6/17/2003 11:11:07 AM Pacific Daylight Time,

mlndhall@... writes:

> I am trying to explain to someone what it like to have

> a child with asperger's. I don't want to sound like

> I'm whining or complaining to this person, but I want

> them to understand the work that this involves. How

> mentally, emotionally and sometimes physically

> exhausting it can be, and yet we continue to go on

> because we have no choice. How we can never stop. How

> it sometimes seems that it never ends (because

> technically it doesn't) and how lonely it can cause

> people to be. How isolating. How people perceive you,

> your children, etc.

I would love to help you on this, but each of our kids are different in

their own Aspie way and so what may apply to my son wouldn't necessary apply to

. I know what you mean here, though and I would love for my friends and

family to understand my situation but its pretty difficult to do. I try to

keep it simple and tell them he has problems processing information the same way

we do, has trouble with social language....wants to be social but doesn't

naturally understand how to, and can get overloaded easily and that he is more

like a 3 yr old than 4. I also tell him even though he is really smart in some

areas that there are areas he needs help with. I know I could go on....but

then it becomes overload for them. Most friends/family that I have written to

regarding my son, don't respond. They don't know what to say. I have entered a

whole new world in regards to autistic spectrum disorders and had I not

experienced it first hand, I wouldn't really know what it was like. Kind of

like

when you have a child for the first time. You can be around children, baby-sit,

etc. but until you have your own 24/7 you have NO idea.

I would try to keep it simple. She may or may not understand. I do have a

friend who doesn't blow me off, but she is very empathetic and can easily put

herself in my shoes and has a degree in early child edu, but most of my friends

think I'm overly concerned to put it nicely:) That is why this group is so

important...I feel normal here and you guys get it!!!! Thanks! If you want

to run some ideas past us, please do!

Johanna

>

> Would you mind emailing me at my aol addy if you

> wouldn't mind writing some kind of response at what

> it's like to parent a child with asperger's. Thanks.

>

>

[Guest guest]

In a message dated 6/18/2003 10:21:50 AM Pacific Daylight Time,

mlndhall@... writes:

> When I went and spoke to my dr. about (when we

> were working on getting a diagnosis), he told me that

> this was NOT something I wanted because it was a LOT

> OF WORK and it would take away from the girls.

I'm confused. Not sure what you're meaning here.

Meanwhile, I'll see if I can come up with my day in the life..... however,

my life in this moment of time is chaos and mayhem with a little bliss thrown

in there!

Johanna

[Guest guest]

In a message dated 6/18/2003 4:39:14 PM Pacific Daylight Time,

alison859@... writes:

> I last worked in June 2002, the end of three years of a very flexible

> contract position that paid well and allowed me to work at home much of the

time.

> They wanted me to consider working full-time, but I had worked for this

> company for 10 years before becoming a contract employee. I knew what this

> commitment meant: my family would take a back seat and they would want 60-75

hours

> a week when a project was hot. Before that, I was " retired " from the

> corporate world with the birth of my twins in Feb 1996 until June 1999.

>

All I can say is wow.... I'm in awe of how you managed all the kids and

still worked, even if it was from home. I totally understand why you wouldn't

want to do 60+ hours, but you are doing so much more now and I'm sure you know

that. I have 2 boys and a daughter that is close to being on her own, but I'm

still hopeful that I can work at least 25 hrs a week when my oldest enters

school. After hearing all the stories however I'm wondering how it will work.

I'll have to figure something out though.

Johanna

[Guest guest]

In a message dated 6/17/03 2:11:07 PM Eastern Daylight Time,

mlndhall@... writes:

> I am trying to explain to someone what it like to have

> a child with asperger's. I don't want to sound like

> I'm whining or complaining to this person, but I want

> them to understand the work that this involves.

Did you try that nice piece called, " Welcome to Holland " yet? That could be

a start. I know it's just an introduction and doesn't cover it all. But it's

an idea.

Roxanna

ò¿ò

It makes sense to go up the molehill

dressed for the mountain

Nan, the Wiser

[Guest guest]

In a message dated 6/19/2003 3:06:53 PM Pacific Daylight Time,

kneeleee@... writes:

> Did you try that nice piece called, " Welcome to Holland " yet? That could

> be

> a start. I know it's just an introduction and doesn't cover it all. But

> it's

> an idea.

>

Roxanna,

Where do you find that?

[Guest guest]

In a message dated 6/19/03 6:09:55 PM Eastern Daylight Time, sjparvin@...

writes:

> Where do you find that?

>

<A HREF= " http://www.angelfire.com/ky/touristinfo/holland.html " >WELCOME TO

HOLLAND</A>

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

Thanks, Roxanna...this is such a great article, story, letter.

[Guest guest]

In a message dated 6/19/03 9:52:10 PM Eastern Daylight Time,

dayton@... writes:

> Did you try that nice poem call " The Misunderstood Child " by Kathy Winters.

> That could really be a good start.

> Dawn

>

Oh yeah, I've heard of that one too!

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

> I am trying to explain to someone what it like to have

> a child with asperger's. I don't want to sound like

> I'm whining or complaining to this person, but I want

> them to understand the work that this involves.

Did you try that nice piece called, " Welcome to Holland " yet? That could be

a start. I know it's just an introduction and doesn't cover it all. But it's

an idea. Roxanna

Did you try that nice poem call " The Misunderstood Child " by Kathy Winters.

That could really be a good start.

Dawn

[Guest guest]

>

> Did you try that nice poem call " The Misunderstood Child " by Kathy

Winters.

> That could really be a good start.

> Dawn

Yes, I hear if you do a Google search you will find it on the

web...LOL! Seriously, if anyone wants me to repost it, I'll be

happy to. Ditto for the article I wrote about how it feels to be a

parent of children with hidden disabilities. I posted it on the

board several months ago. It is going to be included in a book that

is due out in September. The book will be called, " As Long as it's

Healthy " and will be a compilation of essays by parents of children

with disabilities, writing about how it feels.

Kathy

[Guest guest]

In a message dated 6/19/03 9:07:22 PM Eastern Daylight Time,

mlndhall@... writes:

> Anyway. I had put together a packet for the pastor. I

> feel he needs to know that this is REAL. That I'm not

> trying to buy some sympathy. I want him to know that

> this does have a HUGE impact on EVERY aspect of our

> lives. He can be one of those who live in their own

> little world. And you know, that unless you are living

> it, you just can't quite get it. His daughter has a

> life-threatening peanut allergy. But you know, you can

> somewhat eliminate peanut. Or you have an epi pen on

> hand to handle the situation. Can't do that for my

> son. Their daughter was born really early. It was

> scary for them. But you know what? She's fine and

> normal and everything now. Crisis resolved once again.

> He has no idea what we go through on a daily basis.

> And I wanted something that pointed out that I'm not

> whinining. I'm not trying to gain sympathy.

Does the pastor think you try to get sympathy about this?

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

In a message dated 7/2/03 2:01:49 PM Eastern Daylight Time,

rybabysmom@... writes:

> That my ds

> was too high functioning to be accepted by most special needs groups

> yet too different to participate in normal activities. Ex: My ds

> would be almost too good for Challenger(special ed) baseball, but

> could NEVER be on a regular team w/o lot's and lot's of help. So what

> do I do? Tell him he can not play?? This is one example of a million.

> My youngest ds hates change. So on vacation my mom wants to eat at

> Joe's Crab Shack. Hello??? Can you see my autistic ds at such a

> place?? He'd FREAK. There are simply things we can NOT do that most

> others never think twice about.

>

> a...who wishes she could better articulate her thoughts

>

Sounds like you articulated it just fine. I have the same problem with

baseball, btw. It's like we have been sucked into nowhere land....

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

So I am looking

> for words from others to help this person understand

> why I need to be home. Why I don't go places. Why we

> can't do everything like " normal " families.

I tried explaining to the IEP committee just that. I told them I felt

like we lived in a world that would NEVER accomodate us. That my ds

was too high functioning to be accepted by most special needs groups

yet too different to participate in normal activities. Ex: My ds

would be almost too good for Challenger(special ed) baseball, but

could NEVER be on a regular team w/o lot's and lot's of help. So what

do I do? Tell him he can not play?? This is one example of a million.

My youngest ds hates change. So on vacation my mom wants to eat at

Joe's Crab Shack. Hello??? Can you see my autistic ds at such a

place?? He'd FREAK. There are simply things we can NOT do that most

others never think twice about.

a...who wishes she could better articulate her thoughts