Re: Just asking..biggest obstacle?

March 11, 2007

Back in the very early days we used to have glass topped livingroom

and dinette tables HA HA HA Obviously not a good match with any

children once they begin to toddle... those furnishings are long gone

to friends who are sans kiddos!

> 1st - I would say the most difficult thing to deal with is other

people as

> they try and deal with my kid's needs. The school, the neighbors,

the lady

> at the store...I am better at this than I used to be. But it's

never easy

> and I am so tired of having to always advocate and explain. The

years we

> have had good teachers, I have just been in tears realizing how

nice it is!

>

> 2nd - The next hardest part is dealing with the future. I always

tell

> people to focus on today and not get too strung out on tomorrow's

issues..

> but I do! So I guess it's my own mantra to myself as well. Now

that my older

> ds is 18 (HFA), I go between panic and peace about his future. My

biggest

> worry is that my dh and I will be gone and my boys will live like

hermits or

> be harrassed and not know how to handle something. I just will

feel better

> if we can get my ds a job to where he is making a decent living

somehow.

> Whew. If that does not happen, I'll be back to panic for the rest

of my life

>

> 3rd - The next hardest for me has been dealing with the

exhaustion. I'm so

> tired and stressed. An evening at home is never quiet here. I

would like a

> quiet evening sometime. This is where I get most jealous of

people with NT

> kids who tuck into bed by 8. Meanwhile I have hyper man dive

bombing off his

> dresser at 1 a.m. Wah! Oh yes, and if my 10 yo (hfa) would just

not take

> everything apart!!!!!! I have nothing that he hasn't worked over.

And that

> is exhausting!

>

> Roxanna

> ( ) Just asking..biggest obstacle?

>

> As a parent or guardian of a child with Aspergers, what would you

say

> is the most difficult for you or what is your biggest obstacle?

>

> This question is purposely generalized as I want to see what kind

of

> responses it receives.

>

> Thanks-

>

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>

March 11, 2007

I would have to say that I have no biggest obstacle. There are so

many obstacles, each with it's vary own level of seriousness and

difficulty.

This may get long, but it is from the heart.

My son Christian has not formally been diagnosed. The closet I have

come to a diagnosis is: rule out autism spectrum illness. However,

from the research I have done I know in my heart he is somewhere on

the autism spectrum. For me it is a bit frustrating that I have not

been able to get a diagnosis because it prevents him from getting

help and interventions that could be of benefit to him.

It is very frustrating to hear the school say everything is fine and

dandy. The closest they will come to saying there is a problem is to

say he is very sensitive emotionally. It is also frustrating to hear

them say he has many friends and gets along with everyone. I just

want to ask where are all these friends? If he has so many friends

why does noone come over to play? Why does no one ask him to go play

at thier house? Why is it that he has never brought home an

invatiation to a birthday party? Why has he never asked to have a

friend come over and spend the night? Why has noone ever asked him to

come over and spend the night? Why does he come home saying he is

dumb and stupid and that nobody likes him?

I find it very difficult to maintain my composure at times. Sometimes

I am so tired of the arguing, fighting, crying, yelling, and trying

to keep things at least halfway calm. I feel very guilty sometimes

when I have had it, and he tries to tell me something and I just look

at him and say I don't care or I don't wanna hear it. Because I DO

care. I also feel bad when I get sarcastic with him because I know he

doesn't get it. When I am feeling sarcastic I really have to watch my

mouth and control what I say. But, I am not perfect and sometimes I

slip.

I have been at the store surrounded by strangers, or with family and

friends and got those looks. The looks that say that kids is a

spoiled brat. That kids needs a good spanking. That kid is out of

control. That mom needs to take some parenting classes. And the list

of looks could go on and on. I have tried to explain to family and

friends. Some of them understand and most of them at the very least

try to understand. I do however, still catch them occasionally giving

me those looks. I am on my own. Dad left the building.

I am most heartbroken when he is feeling down and upset and sad and

his self esteem is low. Because it is then when he is on the verge of

tears and crying. It is then when he says he should just be dead. It

is then when he says that everyone would be happy if he was dead and

nobody would miss him. How can a person be so young and already think

life isn't worth it? It is hard to hear him talk about different ways

he could kill himself. It is harder, when he is really upset/angry

and he is trying to get knives out of the cupboard so that he can -

in his very own words - " cut his stupid head off " . It is harder when

he is saying that he will just kill himself when he is a teenager.

I don't want to bury him. I would feel like such a failure.

I want to fix my house up but I don't dare. His room is um, well I

don't have words for his room. There is at least 10 holes in the

wall. They are from things being thrown, things being stuck into the

wall, and from simply digging into the wall. The ceiling has that

speckled or textured paint and about half of the texture has been

rubbed or picked off. Besides the wals having holes in them they are

covered with scribbling, writting and drawings. Some are done in pen

or pencil. Some crayons and marker. Others are done with substances

that I have no idea what was used for it. Everything gets broken, if

it doesn't get broken it gets damaged in one way or another. I have

no idea how Christian sleeps on his bed because all his toys are

arranged on his bed. He has one blanket that he sleeps under because

the rest can't get messed up, not even to sleep under. No one can

even sit on his bed without him flipping out. No one can play with

his toys.

Another thing is when he meltsdown he is very verbal and physical.

When he is an adult, if he does the things he does now he will end up

in jail. That is very scary. I don't want to see him in jail.

He is not a bad kid. He is so sweet and kind hearted. And he is not a

mean kid. You know like some kids are just mean, he is not that way.

It is a different kind.

I worry about when I am no longer here to protect him. Wht will

happen? I fear society will fail him. I know I can not do everything.

I know I will not always be able to protect him. That scares the hell

out of me. Right now, he does not recognize when he is getting

overloaded, overstimulated, upset, or whatever you may choose to call

it. I am trying to teach him to recognize it in the hopes that if he

can do that I will be able to teach him how to handle those

situations. That I will be able to teach him that if he can't figure

out a way to deal with the situation, that if at all possible he

leave the situation. I read that most people are devestated by the

diagnosis. I would not at all be surprised so I think I would be

relieved, it would open so many doors that right now are closed

simply because there is no diagnosis. And Finally, I would not be the

only person trying to do so much with him so that one day he will be

able to not just survive but LIVE without me.

There is so much more I could say, but, I just want to cry.

Life is tough for " normal " people, I can't even begin to imagine what

it is or will be like for him.

March 12, 2007

Natasha,

I am sorry for what you are going through. It must really hurt

sometimes. But please, the last thing you should ever worry about is

what a bunch of strangers in a store may think. They are not living

your life. Just ignore them completely. Also, maybe you can consider

getting a medication for your anxiety, as I did. It's not a failure or

an inability on your part, but rather something you do because you

want to be the very best you can for your child. You both deserve

that. Lastly, talk to God, and pray for help and guidance. I wish you

the best.

Penny

>

> I would have to say that I have no biggest obstacle. There are so

> many obstacles, each with it's vary own level of seriousness and

> difficulty.

> This may get long, but it is from the heart.

> My son Christian has not formally been diagnosed. The closet I have

> come to a diagnosis is: rule out autism spectrum illness. However,

> from the research I have done I know in my heart he is somewhere on

> the autism spectrum. For me it is a bit frustrating that I have not

> been able to get a diagnosis because it prevents him from getting

> help and interventions that could be of benefit to him.

> It is very frustrating to hear the school say everything is fine and

> dandy. The closest they will come to saying there is a problem is to

> say he is very sensitive emotionally. It is also frustrating to hear

> them say he has many friends and gets along with everyone. I just

> want to ask where are all these friends? If he has so many friends

> why does noone come over to play? Why does no one ask him to go play

> at thier house? Why is it that he has never brought home an

> invatiation to a birthday party? Why has he never asked to have a

> friend come over and spend the night? Why has noone ever asked him to

> come over and spend the night? Why does he come home saying he is

> dumb and stupid and that nobody likes him?

> I find it very difficult to maintain my composure at times. Sometimes

> I am so tired of the arguing, fighting, crying, yelling, and trying

> to keep things at least halfway calm. I feel very guilty sometimes

> when I have had it, and he tries to tell me something and I just look

> at him and say I don't care or I don't wanna hear it. Because I DO

> care. I also feel bad when I get sarcastic with him because I know he

> doesn't get it. When I am feeling sarcastic I really have to watch my

> mouth and control what I say. But, I am not perfect and sometimes I

> slip.

> I have been at the store surrounded by strangers, or with family and

> friends and got those looks. The looks that say that kids is a

> spoiled brat. That kids needs a good spanking. That kid is out of

> control. That mom needs to take some parenting classes. And the list

> of looks could go on and on. I have tried to explain to family and

> friends. Some of them understand and most of them at the very least

> try to understand. I do however, still catch them occasionally giving

> me those looks. I am on my own. Dad left the building.

> I am most heartbroken when he is feeling down and upset and sad and

> his self esteem is low. Because it is then when he is on the verge of

> tears and crying. It is then when he says he should just be dead. It

> is then when he says that everyone would be happy if he was dead and

> nobody would miss him. How can a person be so young and already think

> life isn't worth it? It is hard to hear him talk about different ways

> he could kill himself. It is harder, when he is really upset/angry

> and he is trying to get knives out of the cupboard so that he can -

> in his very own words - " cut his stupid head off " . It is harder when

> he is saying that he will just kill himself when he is a teenager.

> I don't want to bury him. I would feel like such a failure.

> I want to fix my house up but I don't dare. His room is um, well I

> don't have words for his room. There is at least 10 holes in the

> wall. They are from things being thrown, things being stuck into the

> wall, and from simply digging into the wall. The ceiling has that

> speckled or textured paint and about half of the texture has been

> rubbed or picked off. Besides the wals having holes in them they are

> covered with scribbling, writting and drawings. Some are done in pen

> or pencil. Some crayons and marker. Others are done with substances

> that I have no idea what was used for it. Everything gets broken, if

> it doesn't get broken it gets damaged in one way or another. I have

> no idea how Christian sleeps on his bed because all his toys are

> arranged on his bed. He has one blanket that he sleeps under because

> the rest can't get messed up, not even to sleep under. No one can

> even sit on his bed without him flipping out. No one can play with

> his toys.

> Another thing is when he meltsdown he is very verbal and physical.

> When he is an adult, if he does the things he does now he will end up

> in jail. That is very scary. I don't want to see him in jail.

> He is not a bad kid. He is so sweet and kind hearted. And he is not a

> mean kid. You know like some kids are just mean, he is not that way.

> It is a different kind.

> I worry about when I am no longer here to protect him. Wht will

> happen? I fear society will fail him. I know I can not do everything.

> I know I will not always be able to protect him. That scares the hell

> out of me. Right now, he does not recognize when he is getting

> overloaded, overstimulated, upset, or whatever you may choose to call

> it. I am trying to teach him to recognize it in the hopes that if he

> can do that I will be able to teach him how to handle those

> situations. That I will be able to teach him that if he can't figure

> out a way to deal with the situation, that if at all possible he

> leave the situation. I read that most people are devestated by the

> diagnosis. I would not at all be surprised so I think I would be

> relieved, it would open so many doors that right now are closed

> simply because there is no diagnosis. And Finally, I would not be the

> only person trying to do so much with him so that one day he will be

> able to not just survive but LIVE without me.

> There is so much more I could say, but, I just want to cry.

> Life is tough for " normal " people, I can't even begin to imagine what

> it is or will be like for him.

>

March 12, 2007

Penny,

Thanks for your concern and support. I did not mean to come across as

though I worry about the strangers in the store think. I could really

care less. It just makes me mad sometimes to see people be so

judgemental when they really have no idea what is going on. I do

ignore them. I let it go. I have to.

Natasha

> >

> > I would have to say that I have no biggest obstacle. There are so

> > many obstacles, each with it's vary own level of seriousness and

> > difficulty.

> > This may get long, but it is from the heart.

> > My son Christian has not formally been diagnosed. The closet I

have

> > come to a diagnosis is: rule out autism spectrum illness.

However,

> > from the research I have done I know in my heart he is somewhere

on

> > the autism spectrum. For me it is a bit frustrating that I have

not

> > been able to get a diagnosis because it prevents him from getting

> > help and interventions that could be of benefit to him.

> > It is very frustrating to hear the school say everything is fine

and

> > dandy. The closest they will come to saying there is a problem is

to

> > say he is very sensitive emotionally. It is also frustrating to

hear

> > them say he has many friends and gets along with everyone. I just

> > want to ask where are all these friends? If he has so many

friends

> > why does noone come over to play? Why does no one ask him to go

play

> > at thier house? Why is it that he has never brought home an

> > invatiation to a birthday party? Why has he never asked to have a

> > friend come over and spend the night? Why has noone ever asked

him to

> > come over and spend the night? Why does he come home saying he is

> > dumb and stupid and that nobody likes him?

> > I find it very difficult to maintain my composure at times.

Sometimes

> > I am so tired of the arguing, fighting, crying, yelling, and

trying

> > to keep things at least halfway calm. I feel very guilty

sometimes

> > when I have had it, and he tries to tell me something and I just

look

> > at him and say I don't care or I don't wanna hear it. Because I

DO

> > care. I also feel bad when I get sarcastic with him because I

know he

> > doesn't get it. When I am feeling sarcastic I really have to

watch my

> > mouth and control what I say. But, I am not perfect and sometimes

I

> > slip.

> > I have been at the store surrounded by strangers, or with family

and

> > friends and got those looks. The looks that say that kids is a

> > spoiled brat. That kids needs a good spanking. That kid is out of

> > control. That mom needs to take some parenting classes. And the

list

> > of looks could go on and on. I have tried to explain to family

and

> > friends. Some of them understand and most of them at the very

least

> > try to understand. I do however, still catch them occasionally

giving

> > me those looks. I am on my own. Dad left the building.

> > I am most heartbroken when he is feeling down and upset and sad

and

> > his self esteem is low. Because it is then when he is on the

verge of

> > tears and crying. It is then when he says he should just be dead.

It

> > is then when he says that everyone would be happy if he was dead

and

> > nobody would miss him. How can a person be so young and already

think

> > life isn't worth it? It is hard to hear him talk about different

ways

> > he could kill himself. It is harder, when he is really

upset/angry

> > and he is trying to get knives out of the cupboard so that he

can -

> > in his very own words - " cut his stupid head off " . It is harder

when

> > he is saying that he will just kill himself when he is a

teenager.

> > I don't want to bury him. I would feel like such a failure.

> > I want to fix my house up but I don't dare. His room is um, well

I

> > don't have words for his room. There is at least 10 holes in the

> > wall. They are from things being thrown, things being stuck into

the

> > wall, and from simply digging into the wall. The ceiling has that

> > speckled or textured paint and about half of the texture has

been

> > rubbed or picked off. Besides the wals having holes in them they

are

> > covered with scribbling, writting and drawings. Some are done in

pen

> > or pencil. Some crayons and marker. Others are done with

substances

> > that I have no idea what was used for it. Everything gets broken,

if

> > it doesn't get broken it gets damaged in one way or another. I

have

> > no idea how Christian sleeps on his bed because all his toys are

> > arranged on his bed. He has one blanket that he sleeps under

because

> > the rest can't get messed up, not even to sleep under. No one can

> > even sit on his bed without him flipping out. No one can play

with

> > his toys.

> > Another thing is when he meltsdown he is very verbal and

physical.

> > When he is an adult, if he does the things he does now he will

end up

> > in jail. That is very scary. I don't want to see him in jail.

> > He is not a bad kid. He is so sweet and kind hearted. And he is

not a

> > mean kid. You know like some kids are just mean, he is not that

way.

> > It is a different kind.

> > I worry about when I am no longer here to protect him. Wht will

> > happen? I fear society will fail him. I know I can not do

everything.

> > I know I will not always be able to protect him. That scares the

hell

> > out of me. Right now, he does not recognize when he is getting

> > overloaded, overstimulated, upset, or whatever you may choose to

call

> > it. I am trying to teach him to recognize it in the hopes that if

he

> > can do that I will be able to teach him how to handle those

> > situations. That I will be able to teach him that if he can't

figure

> > out a way to deal with the situation, that if at all possible he

> > leave the situation. I read that most people are devestated by

the

> > diagnosis. I would not at all be surprised so I think I would be

> > relieved, it would open so many doors that right now are closed

> > simply because there is no diagnosis. And Finally, I would not be

the

> > only person trying to do so much with him so that one day he will

be

> > able to not just survive but LIVE without me.

> > There is so much more I could say, but, I just want to cry.

> > Life is tough for " normal " people, I can't even begin to imagine

what

> > it is or will be like for him.

> >

>

March 13, 2007

I hear you loud and clear. Just let them try walking one day in our shoes!

Penny

> > >

> > > I would have to say that I have no biggest obstacle. There are so

> > > many obstacles, each with it's vary own level of seriousness and

> > > difficulty.

> > > This may get long, but it is from the heart.

> > > My son Christian has not formally been diagnosed. The closet I

> have

> > > come to a diagnosis is: rule out autism spectrum illness.

> However,

> > > from the research I have done I know in my heart he is somewhere

> on

> > > the autism spectrum. For me it is a bit frustrating that I have

> not

> > > been able to get a diagnosis because it prevents him from getting

> > > help and interventions that could be of benefit to him.

> > > It is very frustrating to hear the school say everything is fine

> and

> > > dandy. The closest they will come to saying there is a problem is

> to

> > > say he is very sensitive emotionally. It is also frustrating to

> hear

> > > them say he has many friends and gets along with everyone. I just

> > > want to ask where are all these friends? If he has so many

> friends

> > > why does noone come over to play? Why does no one ask him to go

> play

> > > at thier house? Why is it that he has never brought home an

> > > invatiation to a birthday party? Why has he never asked to have a

> > > friend come over and spend the night? Why has noone ever asked

> him to

> > > come over and spend the night? Why does he come home saying he is

> > > dumb and stupid and that nobody likes him?

> > > I find it very difficult to maintain my composure at times.

> Sometimes

> > > I am so tired of the arguing, fighting, crying, yelling, and

> trying

> > > to keep things at least halfway calm. I feel very guilty

> sometimes

> > > when I have had it, and he tries to tell me something and I just

> look

> > > at him and say I don't care or I don't wanna hear it. Because I

> DO

> > > care. I also feel bad when I get sarcastic with him because I

> know he

> > > doesn't get it. When I am feeling sarcastic I really have to

> watch my

> > > mouth and control what I say. But, I am not perfect and sometimes

> I

> > > slip.

> > > I have been at the store surrounded by strangers, or with family

> and

> > > friends and got those looks. The looks that say that kids is a

> > > spoiled brat. That kids needs a good spanking. That kid is out of

> > > control. That mom needs to take some parenting classes. And the

> list

> > > of looks could go on and on. I have tried to explain to family

> and

> > > friends. Some of them understand and most of them at the very

> least

> > > try to understand. I do however, still catch them occasionally

> giving

> > > me those looks. I am on my own. Dad left the building.

> > > I am most heartbroken when he is feeling down and upset and sad

> and

> > > his self esteem is low. Because it is then when he is on the

> verge of

> > > tears and crying. It is then when he says he should just be dead.

> It

> > > is then when he says that everyone would be happy if he was dead

> and

> > > nobody would miss him. How can a person be so young and already

> think

> > > life isn't worth it? It is hard to hear him talk about different

> ways

> > > he could kill himself. It is harder, when he is really

> upset/angry

> > > and he is trying to get knives out of the cupboard so that he

> can -

> > > in his very own words - " cut his stupid head off " . It is harder

> when

> > > he is saying that he will just kill himself when he is a

> teenager.

> > > I don't want to bury him. I would feel like such a failure.

> > > I want to fix my house up but I don't dare. His room is um, well

> I

> > > don't have words for his room. There is at least 10 holes in the

> > > wall. They are from things being thrown, things being stuck into

> the

> > > wall, and from simply digging into the wall. The ceiling has that

> > > speckled or textured paint and about half of the texture has

> been

> > > rubbed or picked off. Besides the wals having holes in them they

> are

> > > covered with scribbling, writting and drawings. Some are done in

> pen

> > > or pencil. Some crayons and marker. Others are done with

> substances

> > > that I have no idea what was used for it. Everything gets broken,

> if

> > > it doesn't get broken it gets damaged in one way or another. I

> have

> > > no idea how Christian sleeps on his bed because all his toys are

> > > arranged on his bed. He has one blanket that he sleeps under

> because

> > > the rest can't get messed up, not even to sleep under. No one can

> > > even sit on his bed without him flipping out. No one can play

> with

> > > his toys.

> > > Another thing is when he meltsdown he is very verbal and

> physical.

> > > When he is an adult, if he does the things he does now he will

> end up

> > > in jail. That is very scary. I don't want to see him in jail.

> > > He is not a bad kid. He is so sweet and kind hearted. And he is

> not a

> > > mean kid. You know like some kids are just mean, he is not that

> way.

> > > It is a different kind.

> > > I worry about when I am no longer here to protect him. Wht will

> > > happen? I fear society will fail him. I know I can not do

> everything.

> > > I know I will not always be able to protect him. That scares the

> hell

> > > out of me. Right now, he does not recognize when he is getting

> > > overloaded, overstimulated, upset, or whatever you may choose to

> call

> > > it. I am trying to teach him to recognize it in the hopes that if

> he

> > > can do that I will be able to teach him how to handle those

> > > situations. That I will be able to teach him that if he can't

> figure

> > > out a way to deal with the situation, that if at all possible he

> > > leave the situation. I read that most people are devestated by

> the

> > > diagnosis. I would not at all be surprised so I think I would be

> > > relieved, it would open so many doors that right now are closed

> > > simply because there is no diagnosis. And Finally, I would not be

> the

> > > only person trying to do so much with him so that one day he will

> be

> > > able to not just survive but LIVE without me.

> > > There is so much more I could say, but, I just want to cry.

> > > Life is tough for " normal " people, I can't even begin to imagine

> what

> > > it is or will be like for him.

> > >

> >

>

March 15, 2007

Please don't give up in getting a diagnosis - no matter what it may be - for

your son.

Print of anything that " is " him from the internet. Take these things with you

to the dr.

You're right, you will be relieved to hear a diagnosis. I believe you WILL

get one,,,,,,,,you just have to find the right dr.

My son has so much stuff around, under and on 3 shelves that we've had to put

up on the walls by his bed, too. He also,,,,,,,,will not sleep under his covers

if I actually make the bed that day. I honestly have to have the sheets pulled

back in a messy way and then it doesn't seem to bother him. He WON'T mess up

his bed if it looks great. I always joke that no ones beds are ever made here,

so that when they actually are, Ian doesn't want to mess it up.

Looking back,,,,,,I remember when my daughter was about 1 year old and she

grabbed onto Ian (about 3) for support and he said, " Stop it. You're messing up

my hairs!!!! " . I never thought about it in an " aspergers " (ocd) way until I

read your post about the bed.

Good luck and let me know if you find someone who agrees with you.

Robin

Natasha <rainb0ws31@...> wrote: