Please help...I am not sure I can take much more

[Guest guest]

So we left for vacation this morning with my boyfriend and his 11 year old

son..my 8 year old aspie is driving me crazy. He has been unbelievably defiant,

rude, loud, etc. I am pretty sure he talked 7 1/2 hours out of the 8 hour

trip..no exaggerating! Everytime someone talks, he talks over them. He has

argued everything.no matter hoe stupid. To top it off, I have a sinus infection

and just started antibiotics yesterday, do I don't feel well, which doesn't help

the patience any. I'm pretty sure my boyfriend and his son have had enough. It

is times like this I wonder why he hasn't ran yet (we have been together 2

years). Why would anyone chose to live like this? I do have an appt to talk

about meds..we tried once before, but he developed tics. I am scared to try

again and feel guilty..like I am only doing it to make my life easier. Any

suggestions on meds? We have to stay away from stimulant (the very meds I think

would help). I need help with tyhe constant talking and arguing. I told him

earlier this is the worst he has ever been, to which he replied, " oh no, I've

been worse " . I mean seriously, how do you deal with that? Everything is my

fault or someone elses..he never takes responsibility. I thought I was doing

good this time..I made a social story on how to act on vacation, especially in

the car. I printed maps, menus, etc. to ward off problems. so far the 1st

restaraunt was an issue-they had stuffed animal heads, his biggest fear!

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- 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!