IEP

BRING:
Tape recorder/tape/batteries
note pad
pen
copy of IEP
copy of schedules
extra folders to return

OFFER:
volunteer pt as aide to help me be on same academic page
to be supervised making sure to emmulate staff

OBJECTIVE:
If things are not being done appropriately, let's ALL get
things on track. I have no interest what so ever in finger
pointing let alone legal action, etc etc. I am eager to
grasp my son's educational life as well as you all do. I
Want to understand it, and be a part of IEP team decisions
or at least be informed of and understand the decisions
made that effect my son. I think they call that being
'in the loop'. Everyone's thoughts on that?

What will it take for his mind to just say 'Okay' when
asked a simple request such as picking up and putting
back something he dropped.

Tell staff the F-U story (without cussing).

Vince does know what I want, does know what teachers want.
He actively decides "I don't have to do what you want me
to do, I'm going to do what I want". So, he is not in the
category of child that really doesn't know what your
expectations are. However, with such a chaotic mind, and
so little practice at impulse control...I do not believe
it's as simple as typical noncomplaince. Does that make
sense, everyone agree? Other's thoughts?


TOPICS:
BEHAVIORAL:
'Behavior' is such a broad word. Can we narrow down the
biggest behavioral obstacles to work on?

For example, Vince to me acted like he's a big fish/small
pond,and needs to feel like the small (but compent) guppy
he is in a sea of experienced adults, teachers, mentors.
In what ways can we begin doing this?

What does he need to change from resistance and noncomplance
to 'okay' in his mind when adults make requests of him?
I'm thinking home and school, every area of his life -
like boot camp. Not the kind where his face is shouted in,
just the opposite. I am finally to a point as his parent,
that I CAN see him hurt, in order for him to grow.

I felt at school there was noncompliance from him that
I saw, that was more 'typical' than asd related honestly.
What do you all think?

Any chance of him spending time with the younger kids,
for reading or art, like last year? Chance to
feel competent is the purpose, plus, social time with
developmentally age appropriate peers. He just seems to
have no peer time, it's so isolating. Maybe for recess?
Can we verbalize the reasons this is so? I know there
is inappropriate behavior, but let's be speciffic. I know
last year he very much enjoyed playing with the younger
kids, than them with him. What does everyone think?

Section 504. From what I was told I'm under the impression
he spends virtually no time in regular ed. I'm not a huge
fan of section 504 being blanketed on all children. Can
we try and get him class time that will benefit him and
not impeed the learning of others. I recall in past years
other than second grade, he spend time in class unaided.

How did the whole 'hug policy' for Vince come about. How
was it turned into a no crying on lap or shoulder policy.
Leading to an high five only contanct. Tell Vincent's
interpretations about Ms. H's sleeve being more important
than his tears...I assume she was searching for a tangible
answer as to why he could not cry on her, I cannot believe
she'd really mean that. And it's very important to me she
is not made to feel badly or awkward about that. The hug
thing needs to be a PROCESS. It needs to be explained to
him matter of fact, honestly, and step by step. From what
I've been told so far, this all became an issue when he
said the word 'puberty' to Miss H. I have to say, I feel
the whole 'do not let Vince touch you' policy has felt to
me like he's being labeled a perverted deviate. He is not.
HOW is Ms. H. so 'uncomfortable' with him crying on her
sleeve? HOW did this whole thing evolve, and why was I
not allowed to talk with Ms. H. about it? I want the
truth, cause only that will make sense. Who was really
uncomfortable with Vince hugging?

Vince needs to have explained to him, his part in things
that change (such as hugs) that he doesn't like...when he
is a part of the change, such as the pinky shake. I'm never
cooth with him, I always tell him the truth - age
appropriate truth I mean.


ACADEMIC:
was adding with Mr. K. (second grade or third) a colum
three numbers, each three digits...able to carry over.
Such as 345+115+212, vertically.

Still not doing coins/money but was with Mr. K. (second
or third grade). Did know the amount of nickels, dimes,
quarters, in a dollar. Could count by 5, 10, 25 to 100.
Should we review old IEP's to see all the things he could
do, and now cannot? It's frightening. How did this happen?

Could tie shoes, not proficiently yet (with Mr. K.)
and now they are tied for him.

Is staff avoiding him having a fit, so he is becoming
sort of treated in ways to avoid him getting upset? I
understand doing that in ways that pertain to autism,
but not in a blanket way - which is easy to have happen
when you are familiar with a persons likes and dislikes.
I understand! I always find it eye opening when someone
who does not know 'vincent's rules' breaks one with him.
Often I'm very impressed with his ability to be flexible.
Equally as often, I'm not.

I'm still concerned about reading...seems to be very
slow to no increase in reading skills. Words he could
a few years ago, he stumbles over now.

What little time I observed, I was surprised at what
looked to me, to be a mind in total chaos. How did I miss
this seeing him at home? No prioritization or organization.
Like an epileptic thought process. With his behavior and
chaotic mind, as things stand now, I don't see how school
will ever be more than a glorified babysitting service. That
is not fair to him, and not fair to the adults who I know
try so hard to share and teach so much to him. How can we
get Vincent to try for staff...as hard as staff is trying
for Vincent? He could be the most fun and enjoyable kid in
the world to be around, and it's so sad and unfair to him
and staff his behavior and attitude prevent this. Does
everyone agree?

I don't want typical behavioral approaches for asd behaviors,
but I also do not want well thought out gentle approaches
for typical bratty noncomplaint attempts at manipulation.
I'd love to grasp all his behaviors all freudian style,
but I don't. Does he need some good old fashion intervention
any grandma of 10 could give us, or an autism specialist.
Or both. I think both.

I'd like nightly homework. An extension of what he is doing
currently at school. The math can be simular to Carmen's.
A step by step A-Z process. So I can see where he's at,
and see him making progress.

OMG, ((((((Mili))))))

I find it real hard to believe that you think you don't know what you're doing.

When you write it all down like that -- it's just so obvious (to me anyway)

...

Vince doesn't have anything in his school life that makes him feel competent.

I didn't realize he was losing skills

The comparison that I made the other day between Vince and my son is just SO OBVIOUS. The school(s) don't want to see him act out at all, so they are doing everything to appease him and keep him from acting out. BUT, they're also preventing him from learning. My G-d!!

I like what you said about getting him some time with REAL PEERS -- people that he has something in common with. Even if they're younger. He NEEDS that feeling of *I BELONG/I FIT HERE*.

If you took a six and a half foot tall two-year old (if there ever were such a thing), he would not feel that he *fit* with teenagers.

I think it's the same thing for Vince -- he doesn't FIT where he is right now.

Mili, have you ever thought about getting Vince a Big Brother?? I'm not thinking as a Father substitute or anything like that. I'm thinking more along the lines of an adult who WANTS TO BE WITH HIM and who can and will subtlely correct his behavior. Boys in school and at home tend to get a lot of exposure to females, which doesn't really teach them the subtleties of male behavior that they need to learn.

Mili, I think you've focused your thoughts really well. I think the personal experience that you have with a similar diagnosis is absolutely invaluable. It's almost like you're the only one around that speaks "Vince" and you can translate for them.

I think you're doing a fantastic job of focusing on what Vince really needs now.

Trust your gut instincts, Mili. I think they're right on target. BIG HUGS (and love).

Barb

Barb, I think cause of your post, I decided to give reading his IEP a whirl. In the past, it all seemed like gibberish...sounds so darn good on paper. Well, it took only an hour, I made several notes...the PROOF is in the IEP. He is not now able to do, what he could last year. And, according to the current IEP, he should have 1,000 something minutes of class time with his peers, he has zero....which, I can understand due to his CURRENT behaviors, but, why the heck wasn't I told as it gradually declined???

Anyhow, it'll have to get worked out. If I really thought, a different school was in his best interests, I might go for it. But I just think there was no communication, things really slipped away somehow. I hope together we can get it all no track. I'm kind of shocked, reading goals on his IEP that said they were 'met', when I know good and well he can't do them now.

Thanks so much for the confidence boost.

And btw, anytime I mention the word 'competence'...it's actually cause of RDI. It's one of the core deficits common to everyone on the spectrum.

But a preachy, postive and hopefully not too annoying cheer for RDI will have to come on another thread.

Mili

((((((Mili)))))),

Kids need a lot of things -- they need love, they need understanding, they need belief that they can do better, they need support, they need guidance, and sometimes they need what my EX used to call a little K-I-T-A ( ).

With **YOU** on his side, I can see wonderful things happening for Vince.

Good job. BIG HUGS (and love).

Barb

Mili,
I wish I had you closer to help ME with my boys IEP's. I like how you wrote it all down.. I know ahead when the boys are coming up and try to prepare for them and think ahead about what needs to be done and said... Then the day comes and I sit there and hear what they say and it all just goes over and its not til its all said and done and I leave (days later usually) that I THINK of things I SHOULD have said or done DURING the IEP.. OR things THEY SAID that upset me. I always seem that they never go the way I want them to go. My brain just doesnt work the way I wish it could. The more I see my boys struggle and go thru the more I see I struggle with. I usually feel like Im alone in a cage of lions. I'll have to see if I can try to type it out like you did.. tho usually I dont think of things like you do.

I hope and pray your meeting goes as well as your notes did and you get him the help he needs and things turn around for the BETTER.

I dont even know if I worded this right the way I wanted to Its also past my bedtime..

HUGS
Gina Marie

Hi, ((((((Gina))))))

Just a 'little' idea -- I use this when I go to the doctor's office. You know that feeling that you always have at the doctor's office -- that you have no control, that there's no time, that you didn't get to talk about what YOU want to talk about. This is what I do and it might just work in your situation with the school: come up with a bulleted list -- enough copies for everybody. Keep it brief. Present one copy to everyone and say "this is what I'd like to address during this meeting to make sure that all my questions are answered." This gives YOU control over the format of the meeting and over pretty much what will be discussed.

When it's YOU against the school, you always get that feeling that you're small and insignificant -- when you're really not. Sometimes, controlling the contents of the meeting helps you feel more powerful.

You can do a real short list for everyone else, like so:

• point one
• point two
• point three

and then do an expanded list with your own notes for your copy.

Good luck. And HUGS.

Barb

The IEP went well, but I've had a lump in my throat since it's been over. Either PMS, stress, or both. I wasn't going to post, but you all have been so there for me. I couldn't not post.

No one denied what I said, Barb your advice was dynamite and I should have done that...I got a teeny bit of time to talk at the end...but since they had an agenda (how do they have an agenda for an IEP I called? Know what I mean?) they did cover most of what I'd planned to. As I spoke at the end, people wrote furiously...I plan to write a 'thank you' letter that expresses all the impressions I got from the meeting, like "so we agree his math skills currently are a bit less than in second grade per his IEP...and we agreed in a 20 min observation he was able to attend 5 of it.

I recorded the IEP, so that will be sooo much easier now.

Gina, follow Barb's advice....and remember I've been to IEP's for two kids. And it started with Vince 6 years ago. No one was more surprised than me, when I read his IEP last night and actually understood it. Took 6 years, so that was a first.

The hugs issue will be handled by his therapist, who I really love, he is such a 'guy' but so professional. He is going to create a process that gradually weans him off hugs, but while doing so replaces the needs the hugs fill. I told the team I didn't agree with it, I think men should hug, hold hands, kiss hello like women...but would go along with it cause I realize we live in a totally repressed society that pays cable stations to see that kind of action. Yeesh. I hoped they'd work with the uncomfortable staff being as they expect Vince to understand it should work both ways.

The therapist said the funniest thing today after the IEP. He reminded Vince that it was his turn to pick an activity and he was going to choose the arboretum...so Vince was like "I'm not going there I want to go fishing"....well eventually the therapist was like "well you're going dude" and Vince is like 'you can't take me, you can't take me down' and the therapist said "I may be wearing an argile sweater but I work out at the gym two times a week, let's go, I'll take you down, come on" And Vince who would usually dive at the chance was like a stone man typing on the puter...it was all I could do not to laugh my brains out. Mr. "I'm gonna take you dooooooown" duped by and oooold man of 30. HEe hee.

I took extra sleeping pill so if I post weird it's that, not drunk. Geez, I wish. Cripe I heard a Hendrix song come on when I was cleaning in the kitchen and it was all I could do not to roll some oregano in a post-it, light it an hope for the best.

So, I'm not quite me (after IEP stress) but want to at least post below a letter I wrote to his consultant. There was a slight problem after the IEP, things got 'ugly'. I'm guessing it's fixed now. But, I'm not sure. Think of the below as written by an adult on the spectrum (which I am).

Thank you again so much, for doing the conference call. I can't wait to see the papers you'll be sending (Ongoing Appraisal). I thought the IEP was ok, but, I called it to express my concerns, and was frustrated I got only the last 5 minutes to do that, especially after typing sort of an outline for myself of the things important to me to say. The good thing was, regardless of that frustration, the 'chaotic mind' topic and ongoing appraisal idea (I think) is about the most pivotal thing that could benefit Vince at school right now.

After the IEP, things got a little ugly.

I was trying to observe Vincent, when I was twice asked to come and talk about observing Vincent, and guidelines we will have to discuss, and so on...the reasons I couldn't observe him changed many times. First cause the aide was not comfortable - I said fine have staff with me. Then it was an issue of the privacy of other students being violated - I said fine he has so much 1:1 time I'll come only then. Then it was "well another student might enter the room" so I said regular moms in my neighborhood volunteer and TEACH my daughter the extra things she has in her day from her IEP...privacy don't seem to be an issue then and neither does a teaching certificate. I stressed I wasn't trying to spy or be a problem, that not to be picky but his IEP does state I should get a video tape of him achieving IEP goals every quarter ever since the beginning of 2005, and I've never gotten even one, so I have to observe.

So, the Principal got involved. She and I have a very bad past report. She closes me in a room (my back was to the door so I knew it after the fact) with her and another staff member and wants to flex with me (she refused to let me observe Vince for 2 years...first and second grade...I didn't know I was allowed to by law so I obeyed). Well Amy, I have to thank you so much, as well as the lady you gave my email to, I think it was April? Who gave me a paper written by an adult aspie, about aversion, and avoiding situations that are stressful...Amy, ordinarily, when boxed in like that I get loud and argue my point, and everyone gets me on so many topics and so far off track it's a disaster that I always wind up the villian in. It's like I don't realize I can leave, I just get all overwhelmed in every way in my head. This time I headed for the door, clearly and at a regular tone said "Move away from that door" and everything got black except the door and I left. I 'FELT' a bad scene about to happen. I have no idea why, guess I had a 'dynamic system' window. I still feel very shakey like I just got in a huge car accident or something like that, and this was close to 12 hours ago. I'm trying to block it out, cause my ongoing appraisal seems to be on the fritz, ya know? I went back later that day and had no problem observing.

It's hard to explain, but there's been so much emotion on the topic of Vince and autism and school and home too...well I'm sort of on the verge of tears, I don't know what's up with that cause I'm not sad per say. So, I'm going to have tomorrow be a priority of destressing, do nonautism things (that's a nice way of saying clean the house really good, hee hee). On Thursday, I'll be back on the ball, cause I want to thoroughly read some papers you posted on your RDI site.

Thank you,
Very much,
Lisa