GOOD news...first I really enjoyed reading the posts. Big time. Barb, holy cow I think I gave you a post traumatic flashback!!!

Second, the principal suggested coffee between the asst. prin. (who was Vincent's first case manager in EC and Kindergarten and who I value greatly). I was no way going to turn down an invitiation for communication. She invited another woman who's known Vince for 6 years now in school. I was totally honest, they were totally honest. I think we can move forward now in the direction I wanted to. WHEW!

I'd love to share everything we said...it was like a 2+ hour coffee 'chat' so I can't, but, I'd say in a nut shell, we agree the touch/hug issue needs to be a process not an instant change. We agree the fact he is now unable to do things he could do THREE YEARS AGO is alarming, and unacceptable. None of us understand why he was starting to participate in class UNaided, and now spends no time in class even with an aide (due to his behavior).

I asked for and will get academic worksheets he is currently doing in the beginning of a folder, worksheets that represent what a school years worth of 'typical' progress, and all the steps/worksheets inbetween. I will continue to observe, the asst. Prin. asked if she could observe with me, I said GREAT! Might make the teacher more comfy, and she will see things I won't too. I asked and she agreed to ask the staff I observe, to observe ME working with Vince at school...part of the reason I want to observe besides seeing his behavior, is to emulate their work/teaching style at home. I can't know if I'm doing that. Not looking forward to having to take what I've dished!! Hee hee.

So so much was discussed, the definately the largest issue, was someway, somehow, Vince must submit to authority. I don't want him to get a chip on his shoulder or resentment to build, the the older and bigger he gets, the less 'cute' his noncompliance is. They ask him to put a book away, and it's "why do I have to do that". I asked Vince the other day, "Does your teacher try to be mean to you like I saw you doing her?" and his first response was "yes, she makes me do math, math, math!". Ok. Wow. I keep forgetting what it felt like, to feel like that. We agreed that no matter what, he is going to have to 'release control' and 'submit' or 'let go' of that thing I can't describe, that makes him think no one has any right, he has all the rights....I hope that makes sense. I told them I do not care if I have to sit at a table with him till 6pm after school, do homework with him all weekend...what ever it takes, he needs to get done to him what ever they do to kids at boot camp to break his errogance (but not break his spirit). And I told them I was finally ready to see him have hurt feelings, in order to grow, and feel that is something that has been impeeding him bigtime, my fear of him feeling heartache. My fear of him looking at me tearfully and thinking I don't care how he feels.

Ok, the more I ramble the less sense this will make.

All I know is this...a few weeks back, when I asked why he continually does exactly what I have just asked him not to, he said "My brain thinks F-U, I don't have to do what mom and dad wants, I'm gonna do what I want" and pretty much has done so for the last 10 years (he is 10 btw) well, it's time to love him enough to let him go and make his own mistakes, let him fly while I still have a net under him...know what I mean?

See, I've never been through the process of raising a child. But I have a sense, that it's best for him now, to begin to raise himself. Be accountable, bear consequences...now I don't mean hand him a beer and say "you decide". But, it was freakin hilarious...I got him some fries tonight, as he tried to be casual about putting some salt on them (I usually say no) I said, "Vince, you're going to be 11 next month, you're old enough to decide if, and how much salt you use". He kind of got uneasy, "you can't do that! I'll use too much and get high blood pressure!" (lol) So I said, "well, that's up to you". He put the salt down, finished his fries...that's all good and fine...the part I don't understand is why he then proceeded while washing his hands after eating, to stick his head in the sink and wash his hair too, and come out looking like a mutated santa clause from not rinsing enough out.

And for once I didn't ask.



I'm am POOPED! Pooped from all the goings on today, pooped from being his everything all the time. Time to let go a little. You guys are all wonderful, for posting and helping me sort through this. I really appreciate today's interaction with my school, and hope we move in a great direction together.

Mili

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

"PT flashback"

"mutated Santa Claus"

Oh yeah, he's testing the limits

You know, Mili, we all learn in a lot of different ways. We learn by hearing, we learn by doing, we learn by observing, we learn by being 'taught'.

Sometimes parents that have gone through 'stuff' -- whatever that stuff is, want to make the way easier for the kid. Doesn't always work. It's good for giving them practical "life examples" but they still have to learn by doing.

So he learns that the french fries taste yucky because he used too much salt.

And he learns that his head itches because he didn't rinse all the shampoo out.

But, the understanding that others have feelings too -- that's hard to teach. They usually "get it" when you compare it to what they're feeling.

Basically, Mili, I don't really think that the goal is "giving up control", I think the goal is "sharing control".

An example is say you have 10 pieces of chocolate and you give one to you and one to me and one to you and one to me <<-->> that's fair because everyone is being treated the same. But, if you give one to you and two to me and one to you and one to me and one to me <<-->> someone is NOT being treated fairly (or nicely).

When I saw the pictures of Vince -- he's getting that big masculine looking body but it doesn't match his brain yet. They need to catch up with each other. I think you understand that and others maybe don't.

I think Vince is so lucky to have you as a Mom because you really do UNDERSTAND what he's experiencing. You ARE doing a good job, you know

Hugs (and love).

Barb

Well, giving up control wasn't the best verbiage I could have used. I'm taking a snip or two from another post here:

Vince has elements about his behavior that is just plain errogant, and he needs a wake up call (several dozen). He feels like a BIG fish in a little pond and all these big fish (the adults) are tip toeing around him, he needs to 'feel' what a little (but competent) guppy he is in a big pond with big fish...know what I mean? It's called the Master/Apprentice relationship, in RDI.

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.

And, when he is in trouble, he is an NT Choirboy...suddenly he knows every social rule he needs to follow, he's mr. goody two shoes. Dunno if he understands it intrinsically, but he sure has memorized the motions of 'good behavior'.

So, the verbiage I used wasn't quite how I meant it...which is why it's always important, like I tell dh, to "listen to what I mean and not what I say" (lol!)

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

Got ya'

I think you're instincts are right on target.

That's what I used to say about my son -- he never saw the consequences of his actions. My husband always-always fought me on it. I never could get my viewpoint across -- until the EX passed 10 years ago. Finally-finally, my son is seeing what I've been saying.

I think you're EXACTLY RIGHT -- he's got to see the consequences of what he does.

That what stinks about the school officials too -- they don't see that if they're not a team with the parents and if they don't follow-through on what they say they're going to do, the kids pay later (when they finally learn the lessons).

Follow your instincts, Mili. I think your gut is telling you EXACTLY what you need to do.

BIG HUGS (and love). Stay strong.

Barb

Thanks very much!

Thankfully, I do believe the asst. prin. knows me well enough, after 6 years (she was Vincent's first case manager) to know I really do want to work with staff to support them. That helps, just as it totally helps me to feel some trust in her instead of total suspicion like when I first came there.

The adults (parents and teachers) sure have lots to sort out trust wise before the child can really be at the forefront!

Thanks again,
Mili

I'm glad you posted Lara. You don't have to have answers or advice, it's great to hear you get my fish analogy. Kind of a bummer to make sense only to myself!

I plan to gather important sentences from all my posts, and emails to school. I want to for once, FOCUS on the PRIORITIES at the IEP, instead of babbling about random memories as a child aspie and animals. Talk about 'after IEP remorse'.

I really have to get it together here. And all the talk about priorities with my son's RDI consultant has put me in a great frame of mind for priority and focus. I know I need some kind of outline on paper, including what I hope to be accomplished by this meeting.

I'm totally messing up my bedtime, still have miles to go before I get to sleep, so better take off here.

Mili

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