Re: Re:The future of our children

[Guest guest]

I second that Amen, Roxanna.  As someone has said on this list

before, you rock!  We all aim high for our children and we work our butts off,

we get discouraged and sometimes have a pity party but then the next day we

pull ourselves up and try again or try something different or whatever.  We

NEVER give up.  And, I love the saying, “They don’t know what they don’t know.â€Â 

It says it all.

From:

[mailto: ] On Behalf Of sandee C

Sent: Wednesday, August 04, 2010 1:36 PM

Subject: Re: ( ) Re:The future of our children

Amen Roxanne. I know I have lived a life tired of people

telling me that I should just give my daughter a licking and her attitude would

improve. Time wears one down with this one.

From: Roxanna

<MadIdeas@...>

Sent: Wed, August 4, 2010 12:13:45 PM

Subject: Re: ( ) Re:The future of our children

People

are getting angry because of the way you are wording your thoughts. This

is one of many posts in a row just like this. From what you write, I am getting

the idea that you believe our kids are struggling because we are just

incompetent or not trying hard enough or do not have enough faith. I'm

sure this is a comfort to feel better about yourself by putting others down.

But it hardly seems you should be surprised at how other people would

take being put down like this. And to believe that only you have

discovered the cure after centuries of parents before you, I don't understand

that thinking process. It is just not realistic. But more

importantly, it is not supportive to anyone in our community. And that is

the part that really ticks me off with this thread. As if we all just

wish to have the problems we are facing, are too lazy or as in a previous post,

we just don't " aim high enough. " That is complete nonsense and

not true. But again, it is so unsupportive of people's real problems that

I think it's mean to say that. it's one thing to secretly believe you are

immune and have all the answers but another to say that on a regular basis,

stomping on people's feelings the whole way. And then you say you are

sorry it hurt feelings but not sorry for what you said? I do not even

understand how you could separate those two things from each other. My

former sped director used to have a saying for moments like this, " They

don't know what they don't know. "

Being a good parent is nice, but it does not prevent kids with AS/HFA from

struggling to achieve even basic skills. Believing in God is a good thing

(and I do, having been raised by a minister) but that does not protect you from

the effects the disability of autism has on your child. (if anything, it

should make you more aware and tolerant, not less so.) Having a high IQ

is nice, a perk in the otherwise problematic scheme of the disability.

But what good is it really? It's mighty handy if you are going to be

taking an IQ test for a living or your friends or boss will choose you as a

friend or employee just because you scored high on an IQ test. Somehow,

though, I don't think the world works that way. And I don't recall the

last time someone asked me my grades from high school. Life sorta didn't

care after that. Nor did having an " A " in Geometry in high

school mean I was immune to having kids with autism, learning disabilities or

that I magically knew all the answers to make these problems disappear either

when I became a mother. And how you could believe that wishing the

problems away would actually make them go away? I don't understand this

concept. Maybe I am just not bright enough. But it makes zero sense

to me.

In this post, you just wrote, " I will not allow him to sit alone in his

room scared of the world " as if there are other parents here who do

that. It is extremely insulting for you to say such a thing, as if we are

all doing just that. You think your own force of will will make these

problems disappear or not happen. Someone said they hoped you were right

but I will go farther and say you are so wrong. I think it's a childish

notion to believe life works that way. Wouldn't it be nice if life worked

like that?

And frankly, the people I have talked to for all these many years on this list

are some of the most resilient people I have ever met. They don't give

up, they aim really high and they work twice as hard as other parents to

achieve even parts of the same thing. They are inspiring and hopeful and

also realistic. They get up and do what needs doing, even when it would

be easier to run and hide. I feel insulted not only for myself, but for

all the people on this list who work so hard for so little and nobody should

make any of us feel as if we just need to try harder, aim higher or stop

" letting " our kids have these problems. You just have no

clue. I can't even express this in words. I just feel so angry

right now to be judged by someone who has no clue what I've been through and

then on behalf of these wonderful people that I have met along the way. I

have seen them struggle and cry and push and work past the point of

reason. Lesser people would have run long ago. But we show up every

day, rain or shine. Kudos to us! I feel like this is a slap in the

face to them to even insinuate that they just need to try harder and they would

not have these problems. I can't even continue because it just makes me

want to say, " ARGH! "

I thought then that you must just post to see if anyone will argue. Some

people do that, so maybe that is the goal? Stir things up? I can't

fathom another parent not even understanding this or making these kinds of

assumptions about other people like this. We get that from neighbors,

teachers, administrators. But other parents who have kids with

autism/AS? I am really unable to understand this. So these posts

are done. If I want to listen to people say ignorant things about my

kids, I would go back to the school and let them lecture me or better yet, grab

a few of my pompous neighbors who think having a disability is a punishment for

being bad. I mean, this is just such a ridiculous thread. I thought

it would be just one or two posts at most. But it just lives on.

And as for not being sorry for what you said. I just can't think of how

to say what I think without sounding extremely rude. This whole concept

is rude and mean spirited. So I will apologize for your posts and I am

sorry I did not catch this thread sooner and shut it off

immediately.

Roxanna

Whenever I feel blue, I start

breathing again.

( ) Re:The future of our children

Thank

you. Thank you. Thank you. You expressed beautifully what I was too upset and

angry to say, I am glad you did not cut a single word.

Sue in TN

>

> I hope I'm wrong, but I read you post as a kind of criticism of how many

of us are raising our children. And I hope you're right. I hope what you're

doing with your son will head off the many problems that develop as these

children get older. We have three sons with AS. The oldest is 19. The other two

are 15 and 12. The 15 yo is less affected, and will, I think, have a relatively

normal future. The 19 yo and the 12 yo are facing a different set of

challenges.

>

> When my 19yo was 7 the way your son is now, I too thought he had a bright

future ahead of him. There were problems at school but none of his classmates

had really sophisticated social skills and they were very nonjudgemental. He

also had a friend and we had just learned that his verbal IQ was/is about 200.

He taught himself to read grown-up novels shortly after his third birthday. He

was truly brilliant. I was envisioning a future for him that might include

being an author or a college professor. You know, quirky, but brilliant.

>

> When he was 7 1/2 the military transferred us to a different state, and we

elected to move into a district that had a fabulous program for gifted kids.

The biggest problem for my son was that he eventually lost contact with that

one friend he had (and has never been able to make another one).

>

> At 8yo he was moved to a full-time gifted program. I was so proud of him

and it just reinforced my hopes for his future. AS wasn't going to stand in the

way of anything for my son. It wasn't going to be an excuse for a failure to

achieve. Yeay! Unfortunately, a gifted program involves lots of transitions all

the time. The typical gifted children thrived, but my son was totally overwhelmed.

The day came when the principal told us that if we brought him back to school

the next day, he would expel him. I was completely new to the IEP world, and

didn't know that this was an empty and illegal threat, so I pulled him out and

homeschooled him for the next couple of years--all the while working on social

skills and learning coping mechanisms. He did *wonderfully* academically, but

when I put him in school I asked them to have his repeat the year we had just

completed to give him an extra year to prepare socially for middle school. The

school agreed, and, again, I was hopeful that things were back on track for a

successful future.

>

> Middle school was a mess. He got lumped in with ED classes because he

needed a smaller group and the same district that has such a wonderful program

for gifted kids has literally nothing for kids with high functioning autism.

The ED kids victimized my son--especially in gym class--to the point that his

teachers had him pulled out of that setting and moved to an LD setting instead.

Well, so much for that brilliant academic future. LD classes don't move as

quickly as even general ed. classes for obvious reasons.

>

> High school rolled around, and my son got a wonderful case manager who

took a personal interest in him. He was available to support my son throughout

the day, and many of the problems we'd seen in middle school improved a lot.

But he still had no friends, and he was constantly getting in trouble with his

grades because he was so very disorganized. You see he has executive

functioning deficits. Keeping himself as organized as a typical high school

student is literally impossible for him. Where could he get more help with

staying organized? The LD classes. He did, however, have some non-special ed.

classes. Latin for example--and he did *very* well on tests and quizzes because

he has a photographic memory--but he was still so disorganized about his

homework. Also, by now his lack of friends was really hurting him. He wrote an

entry in his journal concerning how hopeless he felt and wondering why he

didn't just kill himself. I got a call to come to the school immediately. We

talked with his case manager and I took our son home for a mental health day.

We also contacted his psychiatrist (by now he was on several meds--including

ADHD meds in an attempt to improve his executive functioning skills--so he had

a psychiatrist. He was also in social skills therapy with a social worker, and

we brought her in on the problem. The specialists couldn't really do much about

the root of the problem though. The boy was lonely and you can't *make* other

kids accept someone as a friend. We hoped that he'd make friends with someone

from his social skills group which had several kids with AS, but what we found

was that then *neither* boy had much in the way of social skills, and they

would tend to get involved with their focal interests and ignore each other.

>

> Skipping forward a couple of years, we found that it was time to start

thinking about what our son would do when he finished high school. I was still

thinking that a 4-year college was a natural choice for such a smart kid. The

case manager gradually broke it to me that our son should get some trade skills

in case college didn't work out. I was seeing here on this board that *many*

parents who tried to send their AS kids to college were failing despite

herculean efforts. Our son's social worker told me that AS kids " crash and

burn " in college. Her daughter--also with AS--had just completed the

required classes for a degree in teaching, but at the last minute, the faculty

informed her that she wouldn't be granted the degree or certificate or whatever

because they knew she lacked the social skills to teach and they couldn't in

good conscience grant her the credentials she would need to become a teacher.

She fell apart (including moving out and becoming homeless for a while), and

her mother was desperately trying to pick up the pieces.

>

> We decided to let our son try the high school's technical school. Two

years later, he has five professional certifications in the computer

repair/website design area. He loves the work, but his instructors informed me

that they don't think he'll be able to hold a job in the field. Lack of social

skills. For example, he finished the unit way ahead of other kids, but when his

teacher asked him to help a fellow student who was having problems, he wound up

asking the kid if he was stupid or what? Also, that executive functioning issue

is rearing it's ugly head again. He can't really problem solve the way he would

need to be able to in a professional capacity.

>

> Then there are the day to day issues. He can't remember to take his

medicine by himself. Simple problems confuse him because he has trouble

generalizing one experience to a similar, but different, one in the future.

Personal hygiene is getting better, but we still have to remind him every day

to use deodorant, shave, and brush his teeth. If we don't do that, it doesn't

get done because he really can't see why he should care about how other people

see him.

>

> So here we are. He's 19 and taking a fifth year of high school to give him

a little more developmental time (kids with IEPs can do that). His psychiatrist

suggested that we needed to make him our ward because he still needs someone to

take care of him--we're hoping he'll " grow out of " this, but

realistically, only time will tell whether that's possible. I've had him

evaluated by the Department of Rehabilitative Services, so he can get job

placement and job coaching help--but I'm worried that means they'll get him

hired on at Mc's to sweep the floor. I *still* want to see him go to

college, but we've learned that colleges that offer support programs for kids

with AS are *very* expensive. There's a really attractive program at NYIT--but

it's so expensive that we can't possibly afford it. I'm supposed to be working

on getting our son qualified for SSI because we could use that income to help

him with a program like that, but I'm kind of overwhelmed and *he* certainly

can't do it himself.

>

> This has gotten hideously long, and I hope I haven't lost you, because

what I really want to say is that even *very* high functioning children (and

their parents) have major hurdles to overcome. The social and executive

function deficits are *so* much more handicapping than you think they are when

your child is very young. Also, children who can be diagnosed at 5 or 6 yo

probably *aren't* all that high functioning. Most kids who are truly high

functioning Aspies aren't diagnosable until they're in late grade school or

even high school because they can compensate up until then.

>

> As a parent, raising a child with Asperger's can mean dealing with the

death of one dream after another for your child's future. It truly is

heartbreaking. I know because we're living it. My son is still a wonderful

person. He's sweet and innocent in a way that other people aren't. He's cute.

He's brilliant. And yet none of that is enough to keep him from having the sort

of limited future I could never have envisioned for him when he was 7yo.

>

> I sincerely hope that your experience with AS follows a different pathway

from ours. It's entirely possible that it will because every person with AS is

different from every other person with AS. I'm just saying you need to be careful

about judging other parents because you could so easily be walking in their

shoes in ten years.

>

> Peace.

> Sue

>

>

> > The future of our children

> > Posted by: " " teamjakob06@ ... teamjakob06

> > Mon Jul 19, 2010 12:48 pm (PDT)

> >

> >

> >

> > Lately I have been reading some of the posts on here and thinking a

lot about my child's future. I have NO doubt in my mind that my son will be a

productive, sucessful citizen. I homeschool him and we get very indepth with

certain subjects. He can learn much better than at a private or public school

and the resources are endless. He is 7 now and when he graduates he will attend

college like every other child in America. It will not be a special college

either, it may very well be Washington University as it is in our city of

Fredericksburg. I know that one day he too will have a family and I look

forward to having grandchildren. Not one time have I ever thought that he would

be a stock boy at Walmart or the service guy at our local Exxon, Shell, Wawa,

etc.. Not one time have I thought that he would never amount to much or ever

let him think that. Never ever have I thought of his disability as a bad thing.

There is greatness in all these children and our job is to guide them to become

greatness! Sometimes I think that we tend to hinder our children more than

their disability by setting the bar so low that they believe thenselves that

they can't do anything or won't amount to much.

> >

> > We used to live in Georgia and they had very little resources to

help, so I moved to Virginia, where I was born and my parents were raised. Here

there is a lot of help, BUT DON'T RELY ON THE SCHOOL SYSTEM TO TELL YOU ABOUT

IT OR HELP YOU GET IT! You have to do your home work as I have read that many

of you have and you have to know, have to have faith, and have to believe that

God blessed you with this special child for a reason! The road is less

traveled, tiring, and we all feel that we are treading on broken glass

barefoot, but we all choose to be parents even though God choose us to be

parents of Aspie children, again for a reason! If you stop clipping their wings

and allow them to fly, who knows how high they will soar!

> >

> >

>

[Guest guest]

We lasted about 6 times with the boys and 2 years with our granddaughter. They were different little old ladies and thirty years apart but the effect was the same. Suffer the little children to come unto me was changed to make the children suffer. From: Roxanna <MadIdeas@...> Sent: Wed, August 4, 2010

5:53:46 PMSubject: Re: ( ) Re:The future of our children

Wow, how crappy to have that old lady judging you and the kids each week. I wouldn't have lasted.

Roxanna

Whenever I feel blue, I start breathing again.

Re: ( ) Re:The future of our children



As far as church goes. I am with Robin.. I have never felt so unaccepted as when I attempted church with my kids. With my son's age group there was a little old lady who gave out candy to all the "good " kids after Sunday School . Of course, she always left my kids out since they were not "good" (meaning quiet). When I tried again with my granddaughter, it went ok until the day they introduced loud music to the program, and she wouldn't participate and, again, the little old lady that was the class "shepherd" screamed across the whole Sunday School gathering that "That girl needs therapy!" and later explained that she was only trying to let us know that she is in deep need of help. She harrassed several other kids, too, but my husband would no longer attend church, nor my daughter and I have quit trying too. I talk to God at home.

( ) Re:The future of our children

I hope I'm wrong, but I read you post as a kind of criticism of how many of us are raising our children. And I hope you're right. I hope what you're doing with your son will head off the many problems that develop as these children get older. We have three sons with AS. The oldest is 19. The other two are 15 and 12. The 15 yo is less affected, and will, I think, have a relatively normal future. The 19 yo and the 12 yo are facing a different set of challenges.

When my 19yo was 7 the way your son is now, I too thought he had a bright future ahead of him. There were problems at school but none of his classmates had really sophisticated social skills and they were very nonjudgemental. He also had a friend and we had just learned that his verbal IQ was/is about 200. He taught himself to read grown-up novels shortly after his third birthday. He was truly brilliant. I was envisioning a future for him that might include being an author or a college professor. You know, quirky, but brilliant.

When he was 7 1/2 the military transferred us to a different state, and we elected to move into a district that had a fabulous program for gifted kids. The biggest problem for my son was that he eventually lost contact with that one friend he had (and has never been able to make another one).

At 8yo he was moved to a full-time gifted program. I was so proud of him and it just reinforced my hopes for his future. AS wasn't going to stand in the way of anything for my son. It wasn't going to be an excuse for a failure to achieve. Yeay! Unfortunately, a gifted program involves lots of transitions all the time. The typical gifted children thrived, but my son was totally overwhelmed. The day came when the principal told us that if we brought him back to school the next day, he would expel him. I was completely new to the IEP world, and didn't know that this was an empty and illegal threat, so I pulled him out and homeschooled him for the next couple of years--all the while working on social skills and learning coping mechanisms. He did *wonderfully* academically, but when I put him in school I asked them to have his repeat the year we had just completed to give him an extra year to prepare socially for middle school. The school agreed, and, again, I was hopeful that things were back on track for a successful future.

Middle school was a mess. He got lumped in with ED classes because he needed a smaller group and the same district that has such a wonderful program for gifted kids has literally nothing for kids with high functioning autism. The ED kids victimized my son--especially in gym class--to the point that his teachers had him pulled out of that setting and moved to an LD setting instead. Well, so much for that brilliant academic future. LD classes don't move as quickly as even general ed. classes for obvious reasons.

High school rolled around, and my son got a wonderful case manager who took a personal interest in him. He was available to support my son throughout the day, and many of the problems we'd seen in middle school improved a lot. But he still had no friends, and he was constantly getting in trouble with his grades because he was so very disorganized. You see he has executive functioning deficits. Keeping himself as organized as a typical high school student is literally impossible for him. Where could he get more help with staying organized? The LD classes. He did, however, have some non-special ed. classes. Latin for example--and he did *very* well on tests and quizzes because he has a photographic memory--but he was still so disorganized about his homework. Also, by now his lack of friends was really hurting him. He wrote an entry in his journal concerning how hopeless he felt and wondering why he didn't just kill himself. I got a call to come to the school immediately. We talked with his case manager and I took our son home for a mental health day. We also contacted his psychiatrist (by now he was on several meds--including ADHD meds in an attempt to improve his executive functioning skills--so he had a psychiatrist. He was also in social skills therapy with a social worker, and we brought her in on the problem. The specialists couldn't really do much about the root of the problem though. The boy was lonely and you can't *make* other kids accept someone as a friend. We hoped that he'd make friends with someone from his social skills group which had several kids with AS, but what we found was that then *neither* boy had much in the way of social skills, and they would tend to get involved with their focal interests and ignore each other.

Skipping forward a couple of years, we found that it was time to start thinking about what our son would do when he finished high school. I was still thinking that a 4-year college was a natural choice for such a smart kid. The case manager gradually broke it to me that our son should get some trade skills in case college didn't work out. I was seeing here on this board that *many* parents who tried to send their AS kids to college were failing despite herculean efforts. Our son's social worker told me that AS kids "crash and burn" in college. Her daughter--also with AS--had just completed the required classes for a degree in teaching, but at the last minute, the faculty informed her that she wouldn't be granted the degree or certificate or whatever because they knew she lacked the social skills to teach and they couldn't in good conscience grant her the credentials she would need to become a teacher. She fell apart (including moving out and becoming homeless for a while), and her mother was desperately trying to pick up the pieces.

We decided to let our son try the high school's technical school. Two years later, he has five professional certifications in the computer repair/website design area. He loves the work, but his instructors informed me that they don't think he'll be able to hold a job in the field. Lack of social skills. For example, he finished the unit way ahead of other kids, but when his teacher asked him to help a fellow student who was having problems, he wound up asking the kid if he was stupid or what? Also, that executive functioning issue is rearing it's ugly head again. He can't really problem solve the way he would need to be able to in a professional capacity.

Then there are the day to day issues. He can't remember to take his medicine by himself. Simple problems confuse him because he has trouble generalizing one experience to a similar, but different, one in the future. Personal hygiene is getting better, but we still have to remind him every day to use deodorant, shave, and brush his teeth. If we don't do that, it doesn't get done because he really can't see why he should care about how other people see him.

So here we are. He's 19 and taking a fifth year of high school to give him a little more developmental time (kids with IEPs can do that). His psychiatrist suggested that we needed to make him our ward because he still needs someone to take care of him--we're hoping he'll "grow out of" this, but realistically, only time will tell whether that's possible. I've had him evaluated by the Department of Rehabilitative Services, so he can get job placement and job coaching help--but I'm worried that means they'll get him hired on at Mc's to sweep the floor. I *still* want to see him go to college, but we've learned that colleges that offer support programs for kids with AS are *very* expensive. There's a really attractive program at NYIT--but it's so expensive that we can't possibly afford it. I'm supposed to be working on getting our son qualified for SSI because we could use that income to help him with a program like that, but I'm kind of overwhelmed and *he* certainly can't do it himself.

This has gotten hideously long, and I hope I haven't lost you, because what I really want to say is that even *very* high functioning children (and their parents) have major hurdles to overcome. The social and executive function deficits are *so* much more handicapping than you think they are when your child is very young. Also, children who can be diagnosed at 5 or 6 yo probably *aren't* all that high functioning. Most kids who are truly high functioning Aspies aren't diagnosable until they're in late grade school or even high school because they can compensate up until then.

As a parent, raising a child with Asperger's can mean dealing with the death of one dream after another for your child's future. It truly is heartbreaking. I know because we're living it. My son is still a wonderful person. He's sweet and innocent in a way that other people aren't. He's cute. He's brilliant. And yet none of that is enough to keep him from having the sort of limited future I could never have envisioned for him when he was 7yo.

I sincerely hope that your experience with AS follows a different pathway from ours. It's entirely possible that it will because every person with AS is different from every other person with AS. I'm just saying you need to be careful about judging other parents because you could so easily be walking in their shoes in ten years.

Peace.

Sue

The future of our children

Posted by: "" teamjakob06 teamjakob06

Mon Jul 19, 2010 12:48 pm (PDT)

Lately I have been reading some of the posts on here and thinking a lot about my child's future. I have NO doubt in my mind that my son will be a productive, sucessful citizen. I homeschool him and we get very indepth with certain subjects. He can learn much better than at a private or public school and the resources are endless. He is 7 now and when he graduates he will attend college like every other child in America. It will not be a special college either, it may very well be Washington University as it is in our city of Fredericksburg. I know that one day he too will have a family and I look forward to having grandchildren. Not one time have I ever thought that he would be a stock boy at Walmart or the service guy at our local Exxon, Shell, Wawa, etc.. Not one time have I thought that he would never amount to much or ever let him think that. Never ever have I thought of his disability as a bad thing. There is greatness in all these children and our job is to guide them to become greatness! Sometimes I think that we tend to hinder our children more than their disability by setting the bar so low that they believe thenselves that they can't do anything or won't amount to much.

We used to live in Georgia and they had very little resources to help, so I moved to Virginia, where I was born and my parents were raised. Here there is a lot of help, BUT DON'T RELY ON THE SCHOOL SYSTEM TO TELL YOU ABOUT IT OR HELP YOU GET IT! You have to do your home work as I have read that many of you have and you have to know, have to have faith, and have to believe that God blessed you with this special child for a reason! The road is less traveled, tiring, and we all feel that we are treading on broken glass barefoot, but we all choose to be parents even though God choose us to be parents of Aspie children, again for a reason! If you stop clipping their wings and allow them to fly, who knows how high they will soar!