Calling an emergency IEP, already...*sigh*
 

Where do I begin...there are several issues going on, I'm just going to copy my last letter to school, after they wrote me letting me know Vince is behaving oddly/badly at school which began after they started a 'no hug' policy with him, and told me it was ok with him....

Well, Vincent hates the high five idea, and perseverated about it to me all night. It's not ok with him, when is rejected, he may not talk about it. But, as is evident from yesterday's behavior at school, this 'No Hug Policy' effects other areas of his studies and behavior at school (as well as home). This perseveration impeeds his learning. I would say this would apply to any child. And when we spoke I understood it to be more than a 'No Hug Policy', he's been banned from being comforted in every way familiar to him, that shows him others care. No resting his head on a lap to cry, not even crying on a shoulder on the bus, no pinkie handshake. So, now you are aware, it is not ok with him. And now you are aware, he is not getting what the change is about. He might even be able to recite 'your' words, but he does not get it.

I don't get it either, so I'm not surprised he doesn't. I've really tried, and I just don't get it. When he hugs me too long or strongly, I've worked with him to be gentle. Now, when he hugs me it's appropriate. Hugging and physical touch is something that goes on in the world. If he needs to learn to hug...how hard, how long, what the signs are that the other person is done, then why was the decision made to create a No Hug Policy rather than teach him?

<snip>

And for the last time, it's not that I need to WITNESS Ms. H. talking to Vince about no more physical contact between them. I need to be there so when he says things that show me he doesn't understand why he can no longer touch her or be touched by her, I can explain her perspective to him. Which is hard enough since I myself don't understand the benefit of a No Hug Policy versus teaching him to be appropriate at school where hugs DO take place, tears DO fall and comfort IS given all around him. It's a nonproductive solution, to force a child with autism of all things, to understand why he will no longer be comforted with a hug or putting his head on a shoulder while crying. But, because I think so much of Ms. H., I want to find a way to work within her comfort zone. I can come any time of any day, so it's a bunch of hooey that it'll take another 10 days for this conversation to take place.

How about school considering explaining to aides, before BANNING or making a NO HUG POLICY, that if a child doesn't let go quickly enough during a hug, you help them to do so appropriately so he can take that with him, throughout school, out of school, and into his life. You are saying "Vince, you're doing this wrong, so no more touching". Honest I'm at a loss to grasp this. It's going badly, so your solution is don't do it at all. No one, not one person I've consulted about this issue, understands this solution. Or why it wouldn't be a better solution to get the ADULT aide rather than the CHILD student, to understand a hug appropriately policy.

Really, I'm starting to feel insane, my child is autistic, why punish and restrict and make policies that teach him nothing, other than that he has failed, at even a hug. Am I only making sense to myself?

But there's a bigger issue. Why is he currently doing work so far below what he is able to? Why were there things he could do in past grades, he can no longer do? We can talk about all of this at the emergency IEP, requested 10/16/06.

Thank you,

I understand the no hug policy, but I wonder why it took so long for them to do this? THis policy is for Vinces protection (and well being) as well as the staff.... so it is good for all.
Problem of course is getting Vince to understand it, and coming up with an alternative (not a high five... give me a break is this 1972?)
I don't see why they can't do a pinky shake though? Maybe I don't really know what that is?

Hey Keg...since you and others are posting about this on BT1 I'll post there instead of here :)

we worked quick lessons for little mike
 

little mike (my friend with severe autism) has a similar issue. he likes to touch and hug too many times. well one of our techniques to teach him (he is 21) are quick little spurts of words that we use regularly around him. always saying the same exact words. i.e. can't hug too long, don't touch a light, ask to touch, etc. etc. he ends up saying the little short scentences to himself like he is trying to remember it. and when we use the words he enjoys relating that he knows what i am saying.

i don't know why your school doesn't want to teach him. most autistics i have met love to learn as long as it is presented in a form that they can relate to. which for the most part means to present the information in a way that they enjoy and can conversate or react positively with. little mike has the same problem with the amount of pressure he engages when he is touching. heck now that i think about it, i had a similar issue when hugging family i would squeze so hard i would try to pick them up. not sure why? but it might corrilate to the enjoyment of pressure that some autistics get. heck sometimes little mike will grab my arm and wont let go. and he is darn tootin strong i tell you what. so that is why we say ask to touch etc. or don't touch strangers and stuff.

does seem stupid that the school isn't even trying to help him. no matter what they should enforce new techniques that don't involve touching that would satisfy his social requirements and feelings. like if you can't hug then what about trying to relate specific (exactly the same) words that he may use that can help him deal with his current situation. if he would like to cry on a shoulder and they won't let him that is just plain stupid. i mean he is a child and should be able to voice his emotions and deal with them in a constructive way. heck technically i understand what you mean by not understanding why they are doing this?

did they do this because of him? was he hugging too much and or did he have complaints? or is this something they are enforcing for other reasons?

this makes me a little mad at those people though, for the same reason as you. why not teach him!!!! i mean darn it, he is a kid with autism. i think it would be quite interactive to show him different examples of acceptable hugs and touchings that he can even practice and treat like homework. like he has to hug mom tonight and count to 3 before stopping? ya know? or i might just be a little heated in the thought since it seems like they are just doing what ever is easiest for them and not what is right for the kid? ya know?

i'll stop rambling, i hope there can be middle ground for your issue. lord knows a good hug can help little mike (or even myself). i know i don't prefer touch or contact with strangers because of my asperger's. but i do enjoy it at times from the ones i feel dear about.

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

http://chocolate-moose.p5.org.uk/MIN...bears-mini.gif

I'm so sorry that you and your boy are having to go through this.

I don't really know what it's like to live with someone with autism. All I know I've learned here or in books that I've read.

I did raise a kid that had a hard time fitting into society. So I know what that's like.

What i DO KNOW is Vincent is a beautiful soul and a gift to all of us. I believe that there is a KEY for everyone and that the best thing that you can do for any child is to find that key so that they have their best life.

I can understand restricting the hugging -- especially in this society. But, they need to invest in your boy and his future and FIND THE KEY to connecting with him to TEACH HIM.

BIG HUGS (and love).

Barb

For a transition from hugging to no hugging - would the school consider allowing 'side hugs' for a while?

A side hug is when both people are facing the same direction, and you put one arm around the other persons shoulders, and the other persons puts one arm around your shoulders -- it's a way to hug someone without having frontal body parts touch.

Some people call side hugs "half hugs" since it involves only one arm from each person.

It could be a way for the school to offer a transitional period between hugs and no hugs.

I TOTALLY HAVE TO READ ALL THIS TOMORROW! I'M RUNNING TOO FAR BEHIND. And fyi....I want you all to know that every day after school, the students (especially the younger ones) line up for a nice big HUG from the teacher one by one, as they leave. You will hear teachers even say, "hey, what about my hug?" if the child forgets. The children are never forced to hug though.

There is like more info on this situation than you might even want to know, on BT1.

This is all so foreign to me. In NZ a few weeks ago the law was relaxed so that teachers are now allowed to 'place a hand on a childs shoulder to comfort if the situation warrents this'. Up until recently, although it wasnt actually against the law for hugs or physical contact it was strongly disuaded and the professional body that advises teachers prevented physical contact. It simply isnt ok for teachers to touch children in a day to day way. This has be borne out of avoiding abuse and false accusations of abuse.

Special needs kids are different - and while I understand Vinces schools policy of no hugs, what I dont get that it was ok, and now its not and he has had no time to adjust or comprehend this shift in policy and there has been no acknowledgement or recognition that Vince doesnt understand this sudden shift.

Mili I think it is appropriate for teachers not to be hugging him. I realise that it is tough withdrawing this and it has been handled badly. Vince obviously needs this contact with people he feels close to. But later he is going to have hormones raging through his body and it is better for him to be getting his head around when its ok and when its not ok to touch others now than when he is 15.

Anyway if I have misunderstood anything that has happened forgive me. Autism suck period. Always there are challenges. Hazel has been writing long letters to her self entitled "My ideal boyfriend". When she has virtually no friends and no peers and no contact with anyone even remotely able to be a boyfriend.

When you get a chance to absorb everything email me :) There has to be a way through this for Vince.

Thanks everyone! Thank you thank you.

Because of all the support, I feel so much more sane - ever feel insane when communicating with school?

It seems everyone I've discussed this with seems to feel like I do...this has got to be a process not an overnight change.

Also, it should have been a change I was a part of since I am part of the IEP team. I hope in the upcoming meeting, we can work this out. But to my surprise, this is really the least of the problems at school. I mean, I consider it a huge problem that teachers are demonstrating patience and asking reasonble things of him, and he is resistant, noncompliant, and calling them names. Wow!

It was pretty darn funny, if it weren't so sad...I was asking him last night, "do you think you're always fun to be around for the teachers?" and questions like that as he gave me his complaint list about the people at school. Well, according to Vince, he is nothing but pure joy to be around. Oh, sure.

I well well WELL remember being in my late 20's, and for the first time having the thought that maybe, just maybe, I am annoying to others, that it's not always them being crabby but me doing something. Quite a revelation. I don't want Vince to wait till his late 20's to see HIS part in the way others react to him...does that make sense???

I mean, this was a hug/touch issue, now it's just growing to huge proportions. Huge but long over due proportions. Why the heck is he acting like such a little stink at school, and just being allowed to? I mean, IS extinction the right coarse of action when Vince calls a teacher a moron and cops an attitude for being asked to put a book away? I call that a plain old fashion lack of respect, not asd related. I mean really, I want to see my kid with objective eyes. I want to understand when to cut him some slack, but I think he's getting too much slack cut. He really has had no practice what so ever, in being told to do something and his mind going "Okay!" in a positive way. Again, I'm more concerned with the internal feelings and thoughts than his actions...his actions will be fine when his thoughts are, ya know?

But thank you again, very much, for all the posts. I'm rushing (again) but I just had to read everything.

Mili

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

G-d, that sounds so familiar :mad: My son would swear under his breath at the principal or kick a hole in the door and they'd "say" that he had to do 5-days detention. He'd end up doing 1/2 day and that was it.

The only consistency came from me. My husband ALWAYS did the opposite of me. The school didn't follow-through.

There HAS TO BE consistency of treatment and the school HAS TO DO what they say they are going to do. It's too confusing to the kid otherwise.

I never saw the bad behavior at home. My husband (who was similar when he was a kid) said it was because HE KNEW that the school members would prevent him from hurting himself or others -- so he could blow out as far as he wanted and he would be prevented from totally exploding. Makes sense :rolleyes:

My personal opinion of WHY this happened (and I suspect that something similar is going on with Vince) is that he/they present such a "personable/cute" side to the school (manipulative, in other words) that the school doesn't want to quote-hurt/punish him-unquote. It's just like you don't want to spank the cute puppy for pissing on the floor -- even though the cute puppy probably knows better.

You got your hands full, Mili -- I remember all that crap so well. You DO have to be consistent and INSIST that the school do what YOU want.

BIG HUGS (and love).

Barb

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.

:D

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" http://img.photobucket.com/albums/v9.../killingme.gif

"mutated Santa Claus" :D :D

Oh yeah, he's testing the limits :cool: :cool:

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 http://chocolate-moose.p5.org.uk/MINIS/thumbsup.gif

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' http://chocolate-moose.p5.org.uk/MINIS/thumbsup.gif

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

Notes To Myself For The Iep, Things To Cover...
 

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 :eek:

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.

:D 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 ( :p ).

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 :rolleyes: Its also past my bedtime..

HUGS
Gina Marie

Hi, ((((((Gina)))))) http://chocolate-moose.p5.org.uk/MINIS/vinkko.gif

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

This is confusing being on braintalk and neurotalk. Cant we just pick a board instead of this devided thing.

Mili I think you did great choosing to walk away when you felt being on the verge of a scene. I have heard you describe so many scenes over the years. One that springs to mind was one with the police in a store once. Anyway I think you did well. They have no right to try and intimidate you. Hope your destressing day works.

Take Care

Peta

P.S.
read my gossip thread. there is like a live drama happening in my town and I think I am sort of going to be responsible for blowing the lid on it all.

I watched Dr Phil on the David letterman show last night and thought of you all. Weird huh! I guess its cause they are both Americans maybe. Man they are not at all on the same page, completely different kinds of people. Ok I am rambling now. byeeeeeeeee

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

Yeah, stay away from the oregano :rolleyes:

http://chocolate-moose.p5.org.uk/MIN...bears-mini.gif


Barb

Peta, you are in fact the 'winner' of our forever word war, by saying you saw gross icky Dr. Phil and thought of ME!!!

Worst of it is, I don't even think you meant it 'that' way. So I bow to your greatness, you have finally thrust the killing blow into me. After our years of 'possum grubbing' and Mel and the whole Ellie May Clampet thing, you have reigned supreme.

Ya twisted twat.

Lara and Moose, I didn't even know what you guys were talking about, about the oregano...I had to reread my own post, hee hee.

The bit to 'Amy'...that is the RDI consultant.

Other than getting lost in the Wright's Law site for about 2 hours :rolleyes: and other than keeping Vince from falling into the abyss cause he was unable to 'recover' from thinking he was going to someone's house, when they never even invited him...it was an autism free day.

Oregano free too :D

I'll have to spend the next 4 days (kids are off school thru/fri) constructing a follow up letter to the IEP.

Mili

Dr Phil is fabulous Mili (apart from his annoying blink - which I have noted seems to be less these days) He says it like it is, fixes everything up, and tells cheating husbands how to get right. I love watching these amazing women with extraordinary amounts of money talk about their shopping addictions. Best predictor of future behaviour is past behaviour, hows it working for you? y'think? all those snappy one liners. Identifying selfish behaviour and bringing his brand of conservative comon sence is refreshing in the modern world.

Although I see his new thing yet to be televised here is Dr Phil house in which he puts a white supremist and black woman together as roomies to see how the sparks fly. I mean, melt away prejudice. Dr Phil will do an intervention with your teen and get him off drugs and then pay for your holiday and home make over. All with the glamerous and sexy Robyn on his arm. Robyn doesnt actually seem to do very much apart from fuss over her boys and beam at her hubby. But at least she knows that in a room full of people there isnt a woman there treated better than she is at home. She has written her own book now like hubby and son have. Jay got married in August. I must go out and get Robyn's book. Dr Phils book will make you lose weight and have a phenomenal family. Although I heard he had to pay 10 million out to people who did what he said and they didnt lose weight. Now thats a bit odd.

Okay well I am off to watch todays Dr Phil show and beg you all to keep it coming. He is one of your wonderfull exports. Just like Steve Irwin was an Aussie Hero. Your fabulous Dr Phil is an American Hero.

How how how Milivica/Lisa, can you not love Dr Phil? I am flabberghasted.

Hey Lara,
Well my post was a little tongue in cheek (which is such a weird expression). But I actually do like him and 90% of his advice. But I am not so silly as to realise that the advice that backfires, or situations that leave the man looking less that capable are sure to be editted out.

I havent bought any of his books though so I only contribute to his empire by watching his show.

Whats happening in Oz Lara. In NZ things are getting crazy. We are seeing less and less choice, less freedom of choice and rights being removed left right and centre. Parliament is set to remove the right to smack a child at the end of this month if it is not defeated. And while the spanking debate can go on and on forever I am just concerned at the state getting involved in parenting and criminalizing regular people. Next thing that was floated yesterday was the commisioner for children announcing he wants to set up a register and gather information on all children from birth to adulthood to intercept abuse early. Sounds laudable. but it means that EVERY family will have a government social worker that you have to prove you are a good parent too. The document that was tabled was 4 pages long and not ONCE mentioned parents. It talked of government, communities and children. But not once mentioned the roles and rights of parents. We have also seen midwives have their scope of practice reduced. Or it is about to. The college of midwives fought and fought making 60 submissions against the new rules. The govt have opted to take on board 12 of the least important. The consultation process was a farce and lip service paid. It means that women will have less choice and less ability to avoid a medicalised labour. We will see our 35% caesarean rate sky rocket. No one seems to think it is wrong or bizzare that within a decade or so 40 to 50% of our children will be born via the abdomen. The majority of these deliveries will not have a medical reason for occuring.

It is illegal to home school in Germany. I can imagine it may well become so here. And I am saddened by our slow loss of freedoms.

Meanwhile our youth, who have few boundries are out of control. Angry young men are comitting the worst crimes randomly like never before. A 16 year old killed a 14 year old kid a few days ago. On school ground. They never knew each other, it was totally random.

I saw on the news the story of the boys in OZ that captured on film the tormenting and attack on the special needs girl and then sold it as a DVD. I was horrified. Is the same stuff happening over there?

All very depressing.

Mili,did you call this IEP? If you did you speak first presenting your concerns, get their answers and then you ask for the right to call another one to clarify their answers, at all the times you have the rights to make suggestions, presented in writing and get an answer in writing and call another IEP and so forth. I think, you should be nervous, they supposed to work FOR YOU. If Vince does not benefit from their program, it is not expected Vince to adapt but the program to be modified to cover his needs.

I didn't read all the replies. At all events never mind me, with all my coolesness and smarts I lost anyway.

OooH! Supermama, quickly, I read your post. My Gosh! Canada, US, etc all have similar problems. Uncle Phil is coocko 60% :D

Mili,I read quickly Autmoose2 about little Mike, that is the technique used in the old times and some old caregivers used to use, even with the adults, that was obliterated with the push for them to "normalize" at their "command" or be sedated if non-compliant.

AND, as Keg said "for the safety of the autistic and staff", so they were told to follow protocol or they were out. Now they are guarded by totally untrained people, sedated 16 to 20 hours a day and the government told they are doing "great", when inspected they get more staff, extra clean the premises, don't give so much drugs and taken out.

Peta, I don't like Dr. Phil cause he is SO ICKY!!! And besides that he's SO CREEPY!!!

Isabelle, yep I called the meeting, and I only got to talk for less than the last 5 minutes...but that's ok. I have it all recorded, will listen to it at my leisure and be more prepared next time.

I'll go look at AM2's post now.

Mili