Hello.

[Guest guest]

Hi Jim. Question for you. If you had been able to stay at home and do your schooling online,,,,,,would it have been better? We're doing that for Ian in the fall. He's still going to be able to be with friends (he has a couple/few) after school and we'll be doing things with groups who also do a Virtual school and homeschool. He's very into computers and I am going to take a computer programming course at the Commun coll with him, too. So,,,,,,just wondering about the "staying home" bit. A bit about him - he's actually really good as long as he's doing his thing..........when stress or tension comes up......forget about it. He gets very bored with the waiting at school and the hour of computer class where he has to "practice" looking up websites............. So,,,,,,,that's why he's coming home. That way he can work at his own pace, too,,,without the

stress. Thanks so much. Hey,,,,,,,,,you should have your own website...."Ask Jim".......ha.....I'm serious. RobinJim Wissick <jwissick@...> wrote: Celeste,> Hello! What area of the country are you in?I am in the South SF

Bay area.>> Are you employed full-time? What do you do?I am a full time student with part time work at the moment... Two moreyears till I get my bachelors... have not decided if I will go further. I have worked full time jobs in the past, but now it is time for adegree. Several days a week I work as a driving instructor. A fewtimes a month I teach firearms safety courses with some friends. (Forthose who may be wondering, the thought of picking up a weapon when Iget angry does not even enter my head. In fact it is quite relaxing.) The teaching really helped me get over my terror of speaking in front ofa group.When I was working full time it was as a software engineer for somelocal companies... No formal training, just stuff that I was able to doon my own.> Many of us in this group have young men (sons) we're trying to find> jobs for, and we are having a hard time. I'm not sure my son

is> employable, as he has so many limitations (can't remember a string of> commands, hyper-sensitive to sunlight, wind, bright lights and noises,> and is anti-social -- can't look people in the eyes, etc.). He is 18.> I'm considering trying to get my son on Social Security Disability or> some sort of Government Supplemental Income, if possible. I can't> think of any jobs that he could comfortably do -- and he really is> TERRIFIED at the prospect of an interview. He can't even walk up toa> sales counter and buy something by himself.I can think of a few ideas but I doubt that it is anything you haven'tthought of. What is he passionate about? What does he do all day? What does he retreat back into when he gets overloaded? How did schoolwork? It would help get some ideas if I knew more about him. Reply inprivate if you like and I will do my

best.

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Celeste, your son sounds so much like my twins. They will not go into a fast food place and order for themselves, they'll do without if they have to. Can't drive, we live in the country...Have you tried vocational rehab for your son yet? I got them for my boys although I think I need to call them and set a fire under them. Haven't heard anything back since they tested/interviewed them except that they were accepted. They can shadow them on the job, give them job supports, even help pay for college if his speciality is not within 50 miles (don't quote me on this)..give them a call and see if they can't help your son.

I think if my boys could stay at my house and play computer and video games the rest of their lives and not have to ever go out in public they would be two happy peas in a pod. But unfortunately that can't happen so we have to do what we can to help them . It's just finding help that is SO HARD!! Good luck and give vocational rehab a call! Toni

( ) Re: Hello.

Dear Jim,Hello! What area of the country are you in? I would love to makefriends with an adult with A.S. Are you employed full-time? What do you do? Many of us in this group have young men (sons) we're trying to findjobs for, and we are having a hard time. I'm not sure my son isemployable, as he has so many limitations (can't remember a string ofcommands, hyper-sensitive to sunlight, wind, bright lights and noises,and is anti-social -- can't look people in the eyes, etc.). He is 18.I'm considering trying to get my son on Social Security Disability orsome sort of Government Supplemental Income, if possible. I can'tthink of any jobs that he could comfortably do -- and he really isTERRIFIED at the prospect of an interview. He can't even walk up to asales counter and buy something by himself. He's just too shy (oranti-social or whatever you want to call it.) He has no friends andhe seems to be perfectly happy without them. He says he wants to stayindoors at home alone (or with me) forever. When we do go out inpublic, he says things like "I wish I were invisible -- I hate itbecause people are looking at me." (He's a handsome young man withstriking dark wavy hair and features.)Anyway, do you have any ideas or experience to offer us? There areseveral families with 16, 18, and 20 year old's with A.S. who are notyet employed (and most don't have a driver's license). Thanks,CelesteAtlanta, Georgia

[Guest guest]

Robin,

I feel the need to add a disclaimer. I am not a therapist or Ph.D. Nor

do I play one on TV.

As to your question, I don't know with certainty. When I was in HS back

in the '80's there was no online... at least nothing like what we have

now.

I think there are two parts that I have to address. The first is would

I have done better in academically if I was allowed to study on my own?

With out a doubt, yes. I did work on some correspondence classes when I

was in HS. I did quite well. NT school was too slow and I was bored

in class.

On the other hand, what would I have lost if I did not go to a NT

school? Would I be as adjusted as I am now? Definitely not. It would

have been far too tempting to never venture out of my comfort zone. My

parents worked SO hard at improving my social skills when I was younger.

Camps with the local Y, Boy Scouts (god I hated that), team sports (god

I sucked at that), group therapy (prolly helped quite a bit, but I can't

say how... Was a LONG time ago). All caused discomfort and I hated

each of them... But I had no choice. I had to go.

If you are going to allow comfort zone time by home schooling, then I

would think that you should counter act some of that with required 'out

of comfort zone' time. I think part of what makes me more adaptable is

that I am n0w comfortable with feeling uncomfortable. When picking up

a driving student, I still get fearful when knocking on their door and

find myself praying that no one is home. But I have a 'script' that

gets me through it.

It is so tempting to make life 'comfortable'. It's what we all want to

do when loved ones are in pain. IMHO, I think it is not the best thing

to do.

Perhaps a good compromise would no to completely home school him. My

rifle club has a juniors shooting program. There are allot of

homeschoolers in those classes. One thing that I have heard they do is

form small groups for classes. One parent teaches a subject and several

kids come over for the lessons he/she gives. Other parents teach other

subjects. This will have your son moving from house to house with a

small group of kids. It should allow him to move at his own pace AND

put him in social situations with a group that he will be comfortable

with in time. But don't let him become too comfortable. If we stay in

our comfort zone, we become stagnant.

Taking the class with him at the CC is a good idea IMO.

I hope I was able to provide something to think about. I don't know if

it is applicable to your son. YMMV.

Jim

>

> Hi Jim.

> Question for you.

> If you had been able to stay at home and do your schooling

online,,,,,,would it have been better?

> We're doing that for Ian in the fall. He's still going to be able

to be with friends (he has a couple/few) after school and we'll be doing

things with groups who also do a Virtual school and homeschool.

> He's very into computers and I am going to take a computer

programming course at the Commun coll with him, too.

> So,,,,,,just wondering about the " staying home " bit.

> A bit about him - he's actually really good as long as he's doing

his thing..........when stress or tension comes up......forget about it.

He gets very bored with the waiting at school and the hour of computer

class where he has to " practice " looking up websites.............

> So,,,,,,,that's why he's coming home. That way he can work at his

own pace, too,,,without the stress.

> Thanks so much.

> Hey,,,,,,,,,you should have your own website.... " Ask

Jim " .......ha.....I'm serious.

> Robin

>

[Guest guest]

Thanks Jim. Well,,,,,you said what I've been feeling.....and you're right - we don't want to see our loved ones in pain. I'm so torn between making him do things because that's life and he's just got to do it.....and not making him do what he's not comfortable doing. Again,,,,you were right with your comment on becoming stagnant. New things are always scary......that's just life. We have a lot to think about.Wow - you're good..............and you should play one on tv. Robin Jim Wissick <jwissick@...> wrote: Robin,I feel the need to add a disclaimer. I am not a therapist or Ph.D. Nordo I play one on TV.As to your question, I don't know with certainty. When I was in HS backin the '80's there was no online... at least nothing like what we havenow.I think there are two parts that I have to address. The first is wouldI have done better in academically if I was allowed to study on my own? With out a doubt, yes. I did work on some correspondence classes when Iwas in HS. I did quite well. NT school was too slow and I was boredin class.On the other hand, what would I have lost if I did not go to a NTschool? Would I be as adjusted as I am now? Definitely not. It wouldhave been far too tempting to

never venture out of my comfort zone. Myparents worked SO hard at improving my social skills when I was younger.Camps with the local Y, Boy Scouts (god I hated that), team sports (godI sucked at that), group therapy (prolly helped quite a bit, but I can'tsay how... Was a LONG time ago). All caused discomfort and I hatedeach of them... But I had no choice. I had to go.If you are going to allow comfort zone time by home schooling, then Iwould think that you should counter act some of that with required 'outof comfort zone' time. I think part of what makes me more adaptable isthat I am n0w comfortable with feeling uncomfortable. When picking upa driving student, I still get fearful when knocking on their door andfind myself praying that no one is home. But I have a 'script' thatgets me through it.It is so tempting to make life 'comfortable'. It's what we all want todo when loved ones are in pain. IMHO, I

think it is not the best thingto do.Perhaps a good compromise would no to completely home school him. Myrifle club has a juniors shooting program. There are allot ofhomeschoolers in those classes. One thing that I have heard they do isform small groups for classes. One parent teaches a subject and severalkids come over for the lessons he/she gives. Other parents teach othersubjects. This will have your son moving from house to house with asmall group of kids. It should allow him to move at his own pace ANDput him in social situations with a group that he will be comfortablewith in time. But don't let him become too comfortable. If we stay inour comfort zone, we become stagnant.Taking the class with him at the CC is a good idea IMO.I hope I was able to provide something to think about. I don't know ifit is applicable to your son. YMMV.Jim>> Hi Jim.> Question for you.> If you had been able to stay at home and do your schoolingonline,,,,,,would it have been better?> We're doing that for Ian in the fall. He's still going to be ableto be with friends (he has a couple/few) after school and we'll be doingthings with groups who also do a Virtual school and homeschool.> He's very into computers and I am going to take a computerprogramming course at the Commun coll with him, too.> So,,,,,,just wondering about the "staying home" bit.> A bit about him - he's actually really good as long as he's doinghis thing..........when stress or tension comes up......forget about it.He gets very bored with the waiting at school and the hour of computerclass where he has to "practice" looking

up websites.............> So,,,,,,,that's why he's coming home. That way he can work at hisown pace, too,,,without the stress.> Thanks so much.> Hey,,,,,,,,,you should have your own website...."AskJim".......ha.....I'm serious.> Robin>

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Hi, I'd just like to say hello and introduce myself. I was diagnosed

at Easter with RA and Hypothyroidism after months of being told that I

was suffering from depression etc, I was close to collapse when they

finally decided to take blood tests and discovered how ill I actually

was. My liver and kidneys had started to fail.

I go to see the senior consultant next week.

I feel quite isolated at times and don't know anyone else who has

either of these conditions.

I live in a quiet area of Cornwall UK and just wondered if there were

any support groups nearby?

Thank you

x

[Guest guest]

Welcome! I think that most of our group are in the US, but everyone is here

to support one another regardless of their location. I hope that someone

will be able to direct you to a local support group in the UK, but I would

check your local hospitals since most offer those types of services.

There are also supporting those with liver and kidney

conditions. You might want to become involved in one or more of those as

well.

Good luck with your visit to the consultant next week. Make sure that you

ALWAYS get copies of every test results (blood, x-rays, etc.) and keep them

together. This way, you will have a complete history available if you need

it at some point in the future. I can't stress this enough - if you have to

gather all this information 3 or 4 years from now, it will be hard for you

to remember and will be very time consuming.

Take care, Dorothy

_____

From: [mailto: ] On

Behalf Of madhattercharliechurch

Sent: Thursday, August 21, 2008 8:16 AM

Subject: [ ] Hello.

* Hi, I'd just like to say hello and

introduce myself. I was diagnosed

at Easter with RA and Hypothyroidism after months of being told that I

was suffering from depression etc, I was close to collapse when they

finally decided to take blood tests and discovered how ill I actually

was. My liver and kidneys had started to fail.

I go to see the senior consultant next week.

I feel quite isolated at times and don't know anyone else who has

either of these conditions.

I live in a quiet area of Cornwall UK and just wondered if there were

any support groups nearby?

Thank you

[Guest guest]

Thank you for the support Dorothy and the good advice

x

 

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Glad to see your name, Lesley, so now we don't have to refer to you as " Mad

Hatter "

_____

From: [mailto: ] On

Behalf Of Lesley Rafferty

Sent: Thursday, August 21, 2008 10:55 AM

Subject: RE: [ ] Hello.

Thank you for the support Dorothy and the good advice

x

Send instant messages to your online friends http://uk.messenger

<http://uk.messenger.> .

[Guest guest]

> >

> > im new to the group. my son has aspergers. he was diagnosed at the age of

7 and now hes almost 11.

>

> Welcome!

>

> Ruth

>

sorry. i never told anyone my name. im crystal and my sons name is gus. i

posted at 2:30 am our time and i was just getting off work so my brain was not

in the right place. duh. sorry. lol! and im looking forward to chatting with

everyone. my sons doctor just suggested that he dosent understand why my son is

acting out so much and suggested that we send him to the hospital in red deer

for a 7 day stay so they can observe him both off and on his medication. the

very suggestion has me so scared and worried. hes never been away from home for

more than just an overnight to grandma and grandpas place or to his aides place

for a 24 hour respite. the very thought of him off the meds is enough to scare

the life out of me. he gets figetey and cant stay still and cant keep his hands

to himself. he also has a tendancy to get violent and throw things and tip

desks over and throw them across the room. hes also been known to seriously

hurt other kids. its only in the suggestion stage at this point but we have

another appointment coming up very soon. im just plain scared here. any

suggestions?

[Guest guest]

>

> my sons doctor just suggested that he dosent understand why my son is acting

out so much and suggested that we send him to the hospital in red deer for a 7

day stay so they can observe him both off and on his medication. the very

suggestion has me so scared and worried.

This seems rather extreme to me, although it depends on what they have already

done. Has he had a comprehensive neuropsych eval and autism eval? Is this

strictly a medication issue, or has he not been properly diagnosed?

Ruth

[Guest guest]

> >

> > the last time my son was in an evaluation was back when he was in

kindergarden. they sent us to a cetre in red deer and that is where we found out

what his diagnosis was. the only reason they sent us there was for funding for

an aide. his current doctor however has also said that he thinks that there may

be some mood nos happening here. numerous observations have happened at school

and they are all saying the same thing. that it is aspergers. now that you

bring the subject up, maybe it is a medication issue. or wrong diagnosis. all

i know right now is that things that werent happening before are happening now.

and at a rather allarming rate. i dont know what you mean about a neuropsych

eval. maybe he hasnt had one and i should press for one. can you please

explain to me what exactly that is?

>

> First of all, if you are in a position to do so (have good health insurance or

money to pay out of pocket), you may want to get away from depending on your

school district (or whoever it is that is sending you places and telling you

what to do) to tell you what is going on with your son. School districts

typically have their own agenda. You need to have yours. It is advantageous to

get yourself in the position where you can tell the school district what your

son needs rather than the other way around.

>

> Anyway, below is one blurb on the internet I found that seems a good

description of what a neuropsychological evaluation is.

>

> " A Neuropsychological Evaluation is a medical procedure ordered for the

purpose of assessing the presence or effects of organic brain damage. A

Neuropsychological Evaluation is distinct from a Psychological or Psychiatric

Evaluation which identifies mental health, emotional, personality, and/or

behavioral dysfunctions.

>

> The Neuropsychological Evaluation is far more comprehensive and sophisticated

than a standard Psychological Evaluation. Cognitive areas assessed for potential

dysfunction include: attention, memory, visual-spatial functioning, language

skills, higher level problem-solving, and visual-motor speed and coordination.

Issues such as ability to return to work, functional ability, treatment

recommendations, and placement options are addressed as well.

>

> As a result, the total time for administration, record review, scoring,

interpretation, and writing of the evaluation is often lengthy (about 10 hours).

>

> Due to these factors, most insurance companies reimburse the

Neuropsychological Evaluation under their Major Medical rather than Mental

Health benefits. "

>

> By the way, I had a colleague who did what they are suggesting you do--put

their son in a residential facility for a time (for them it was several weeks)

for closer observation since they couldn't figure out what the problem was. The

first thing they did was take him off all his meds to see what the " base child "

was like. Their child was about 10 when they did this. It really helped them

because they found out he was very wrongly diagnosed. When they took him off

his meds the result was--nothing. It turned out he didn't even have any

psychiatric problems--was just highly gifted, started acting out in school out

of painful boredom, things just kept escalating as his intellectual needs were

never addressed and he picked up bad things from the behaviorally disturbed kids

he was put in with in special ed, etc.

>

> But whatever you end up doing--definitely make sure he gets a neuropsych eval.

This could be part of what they have planned for his hospital stay. I would say

definitely ask more questions about exactly what they have planned. Of course,

I realize that is partly why you are here on this list--to figure out what to

ask.

>

> Be aware that all these evaluations/observations should include extensive

findings and recommendations. Make sure you are getting a written report and

getting the chance to sit down and talk about it. You should have gotten more

than a dx from the evaluation that was " just to get funding for an aide " . I'm

feeling it is fairly certain you got a written report from the kindergarten

evaluation. It might help you to get it out and read the findings and

recommendations sections. If you have misplaced it, the school district or

whoever did the evaluation can get you a copy. Also, all these

observations--are they giving you anything in writing on their findings? Are

they just verbally telling you it is Asperger, or is there something more

formal? They should be doing a formal evaluation if they suspect Asperger--ask

for one in writing.

>

> I may be making some assumptions on your situation here, so I'll stop.

Hope this is helpful.

>

> Ruth

>Thank you ruth. the information you sent me in that last post was very

helpful. kinda gave me a starting point. the next appointment we have with his

dr. is very soon and if you hadnt handed me the info about the

neuropsycholgical evaluation (hope i spelled that right) i wouldnt have even

known where to start.

this internet thing is wonderful. people can exchange info at any time from

anywhere. love it.

anyway, back to the subject at hand - as far as what the plan for the hospital

stay is i really dont have a clue what the game plan is so far. i havent been

able to contact the fscd worker that was at the last meeting. i've tried

contacting her on numerous occasions and havent heard from her as to what

exactly the hospital visit consisted of. i figured seeing how as the dr. didnt

have time to talk to me after the appointment was over i would try to talk to

her. maybe shes just really busy. i contacted the agency that deals with my

sons 24 hour respite and the weekend aides and asked them if they had any other

parents within the agency who might be willing to speak to me about when they

took thier child in to this same program and get a rough idea of what happens

seeing how as no one else was really available to speak to regarding this

subject. seemed like a logical thing to do. in the prosess of trying to get

hold of this lady now.

oh nuts. what i meant by " just to get funding for an aide " was indeed

incorrect. what i meant to say was that they were looking for funding for an

extra full time aide for this particular classroom that my son was in anyway,

before they realized that he had a few problems.

yes, i did recieve a formal evaluation in writing along with all the testing

when he was first diagnosed. we also had a meeting with all the team members at

that time. each person had thier part in this and said what thier findings were

and gave me time to ask questions. although at the time i was quite new to all

of this and scared out of my mind. i didnt know what it all meant. for 2 weeks

after it was all said and done, all i remember doing was cry. i do still have

the evaluation. ive kept every scrap of paper that all these professionals have

ever given me since diagnosis day. those pieces of paper probably have vines

growing around them by now. lol!!! i will be sure to dig those out sometime

really soon. i may even understand them a bit better by now.

thanks again. youve given me not only a starting point, but also a few things

to think about.

Crystal