Teaching life skills -was: Cure

[Guest guest]

Sue – I was also in a lot of ways like you and thought the

life skills would just come naturally.  For the love of Pete, why I thought

that when it didn’t seem like anything came naturally is beyond me!  My

son has just finished a year in a new program that is being offered by the same

organization where he did Social Understanding groups for several years.  This

program is called FOPI (Focusing on Personal Independence).  Even though his

first year of college was not very successful as you have gathered from my

earlier posts, he has progressed a lot with this program though certainly not

to a level where I can say with any certainty that he will be able to be

totally independent some day.  Since we are seeing lots of progress we plan for

him to continue in this program.  I continue to be hopeful that with time, maturity,

supports, etc. that he can be fairly independent.  Without this hope I think I would

just give up some days!

From:

[mailto: ] On

Behalf Of suetois

Sent: Friday, June 11, 2010 10:10 AM

Subject: ( ) Re: Cure (Plus the need for life skills

training)

Thanks, Roxanna. I used to post a lot more when

I was first learning about AS and when I was still frustrated with the school

because I was still trying to get them to do what they should for my kids. I've

since given up on that last bit. In fact, we're planning to pull our youngest

(12yo) out and homeschool him for both years of middle school. I've become convinced

that our middle school is positively toxic to kids on the spectrum. The way

typical kids behave at that age is part of the problem of course, but a bigger

problem is the school's attitude that kids this age need to be toughened up for

high school. Consequently, they feel justified about being very inflexible. I

wish our district had a program for kids with high functioning autism, but they

don't, and they're not going to get one any time soon. I fought the good fight

for about ten years, but now I'm just taking care of what needs to be done for

my kids myself. So it's homeschooling for us. Our high school is less rigid and

by that time many of the other kids are more mature, so I'll probably put our

son back in school for high school. Meanwhile, though, I'm going to busy for a

couple of years.

AFA posting with the perspective of someone who has older kids: I know there

were a couple of parents of older kids who were posting when our 18yo was

younger. I would read their posts and it kind of scared me, but at the same

time, it also helped prepare me to be where we are now. I gathered a lot of

information about what might work and what might not.

For example, I've seen a number of parents struggle to get their kids into and

through college. Personally, I fought hard against the idea of sending my son

to the high school's tech school. But I could see from other people's posts

that many times sending kids with AS to college either fails, or they graduate

and then are unable to function in the work place when they're in competition

with neurotypical people with the same sorts of degrees. So we're kind of

splitting the difference. Our son is earning technical certifications, but

we're keeping the door open for a transfer from community college to a 4-year

college at some point. Then I think we'll send him to DeVry for further tech

training--and then he should be positioned to do be quite marketable. He'll be

somebody with tech skills and will be looking for work in that area, but will

also be someone who already has the degree that so many employers look for.

My biggest concerns these days are about getting him the life skills it takes

to be independent. When he was younger I really didn't think that was going to

be a problem despite the fact that more experienced parents here were reporting

exactly those problems. I thought they'd just come naturally. Well, it turns

out that they're as much an area that needs to be specifically taught as the

social skills area.

I think educational programs for kids with ASDs should include working on life

skills from an early age the way programs for kids with intellectual deficits

do. AS kids have many of the same problems despite not having low intelligence.

However, it's hard enough to get schools to deal with the academic and social

problems. Getting them to step up to the plate with life skills is a whole

other battle. One that I think needs to be fought if our kids are going to be

prepared properly for independence though. Unfortunately, by the time we

parents realize it's going to be a huge issue, our children are on the

threshold of being adults, and we find ourselves trying to deal with functional

deficits with very little time and very little insight as to how to approach

the problem. There are live-in programs out there (for example, at some

colleges) that can help with this, but I don't know of any therapists/programs

that start working with kids in late grade school through high school to help

them in this area. It would be an excellent area for activism because in the

long run it's as critical to independence as the behavioral issues are.

Sorry this got so long. I should have opened a fresh thread about teaching life

skills.

Sue

> > >

> > > My almost 19yo son has AS. He's never had any sort of verbal

> delay, and he has a *very* high IQ. But he's not going to be leading

> an independent life as an adult for a long time--if ever. He needs to

> be our ward (and is happy to be so) because he can't handle major

> decisions for himself. He can't find a doctor or an apartment,

> navigate college, be responsible for remembering to do important

> things, or do many other things that a typical person of his age can do

> if they absolutely have to. He probably won't ever be able to drive

> because he processes events slowly and startles rather than reacting

> appropriately when something unexpected happens. He has earned two

> professional certificates, but is on the waiting list with the

> Department of Rehabilitative Services because he's sufficiently

> handicapped to qualify for job placement and job coaching

> services--without which he would be unable to get or retain a job. (He

> has no sense of business-appropriate behavior and doesn't self-edit the

> sort of comments that will get you fired, so he's going to need an

> employer who is *very* understanding.) Something like 70% of adults

> with AS are under or unemployed because of similar problems. He's

> never had a friend despite the fact that he would dearly love at least

> one. He probably won't ever marry and have a family of his own. We're

> *hoping* that, with appropriate supports, he'll eventually be able to

> leave home, but that's years and years in the future if ever.

> > >

> > > I'm also saddened by parents whose children have been diagnosed

at

> 5 or 6 yo, who think that their child has " mild AS. " If a person

has

> mild AS--the kind that means they're going to be quirky adults and

> absent-minded professors--they're often not diagnosed until they're in

> junior high and their social deficits have become a problem. (I have

> another son who has AS who's in that category.) If AS is apparent at

> the age of 5 or 6, it's probably not going to be a " mild case. "

It's

> all about not keeping pace developmentally with chronological peers.

> None of the 5yos have great social skills, so a mild case isn't even

> apparent at that age. However, as typical children become more

> socially competent, kids with AS lag farther and farther behind. If

> you can already see that lag at a very early age it's a pretty good

> indication that you're not dealing with a mild case of AS.

> > >

> > > As far as the need for a cure goes, my feeling is that if, as an

> adult, you have AS and you can take care of yourself, you probably

> don't need a cure--although you might want one anyway because it would

> simplify life a great deal. If you don't need friends or a family of

> your own, then you're not going to be bothered by their absence and you

> probably don't need a cure. If, however, you want a family, your

> spouse is going to have to do the heavy lifting in the relationship if

> it's going to succeed. My husband has AS, so I have some experience

> with this. If you have AS, and it means you can't hold a job and have

> to depend on your family, social services, or the kindness of strangers

> as an adult rather than taking care of yourself, then you're being

> selfish and deluding yourself if you think you're simply

" different. "

> > >

> > > Sue

> > >

> > > > Re: Cure

> > > > Posted by: " Roxanna " MadIdeas@ roxannaneely

> > > > Tue Jun 8, 2010 2:12 pm (PDT)

> > > >

> > > >

> > > >

> > > >

> > > > Well, if that is true then she is wrong. This is a group

for

> parents

> > > > whose kids have AS and HFA. (My two ds's have HFA and not

AS) We

> are

> > > > not an " AS only " group. Also, AS people are not

guaranteed

> completely

> > > > independent lives as adults at all either. If they were all

going

> to

> > > > do fine as adults, then I can see how one wouldn't be that

> worried and

> > > > how one might think having AS was just a " different

way of

> thinking. "

> > > > However, that is not true at all.

> > > >

> > > > Also, autism is a spectrum disorder but that does not mean

there

> is a

> > > > menu of problems that only certain people have within the

> spectrum.

> > > > Rather, it means they all have the same core problems with

> varying

> > > > severity.

> > > >

> > > > Roxanna

> > > > Whenever I feel blue, I start breathing again.

> > > >

> > > > Re: ( ) Cure

> > > >

> > > > Do people who can't even talk or communicate have

aspergers? I

> think

> > > > she is referring to aspergers only--as this is an aspergers

> group.

> > > > Asperger children are even above high functioning autism on

the

> > > > spectrum. They are completely independent as adults and do

not

> have the

> > > > issues that other lower spectrum children have.

> > > > So I think she is referring to Aspergers--not the children

who

> can't

> > > > communicate or participate.

> > > >

> > > > Purrs & Kisses,

> > > > Kristal of Digi Kitty

> > > > The Kitty who loves Digi!

> > > > Designer for the VDBC " More " Team - you can see

my designs HERE!!!

> > > >

> > > > Â

> > > > Â

> > > > Â

> > >

> >

>

[Guest guest]

, where are you sending your son? We found a program at NYIT (New York

Institute of Technology) that does all sorts of great things like teaching older

kids and young adults with ASDs to budget, navigate public transportation (in

NYC!), work on social skills, etc. It's a live-in program and it's integrated

with the university and tech training. They have a 3-week summer session too.

The only problem is the cost. When I looked into it several months ago the

summer session alone was beyond our reach. The guy I talked with told me that

school districts pick up the cost for many of their students as part of an ESY

requirement in the kids' IEPs, but I can't imagine our district doing that.

Plus, next year is my son's last year in HS (he'll be doing a fifth year of HS

in the fall). There's no time to fight the good fight even if I did think I

could win it.

Sue

>

> Sue – I was also in a lot of ways like you and thought the life skills would

> just come naturally. For the love of Pete, why I thought that when it

> didn't seem like anything came naturally is beyond me! My son has just

> finished a year in a new program that is being offered by the same

> organization where he did Social Understanding groups for several years.

> This program is called FOPI (Focusing on Personal Independence). Even

> though his first year of college was not very successful as you have

> gathered from my earlier posts, he has progressed a lot with this program

> though certainly not to a level where I can say with any certainty that he

> will be able to be totally independent some day. Since we are seeing lots

> of progress we plan for him to continue in this program. I continue to be

> hopeful that with time, maturity, supports, etc. that he can be fairly

> independent. Without this hope I think I would just give up some days!

>

>

>

>

> >>snipped the previous posts in the " Cure " thread<<