Re: HELP- Need someone to talk me down B4 tommorrow--UPDATE

[Guest guest]

Hi all you wonderous beings!

Wanted to give an update & thank everyone again for sharing support &

collective wisdom.

This universe certainly has it's ironies...I've spent 39 years

righteously & successfully advocating for others in a variety of

areas...the past eleven for my child as well.

As a parent, I have always been reasonable & highly conscious of the

delicate balancing act involved as a parent AND advocate of a being

with special needs. Whether it was for another cause, for my child

or other beings, I have strived to stay as informed as possible &

took action as opposed to reaction.

Folks, if anyone has seen mushroom type clouds lingering over

northern Georgia that would be the nuclear REACTIONS emitting from

our house.

Very sad really as this is the first time in the 12 years I have

known my husband to see him get angry. And it is the first time for

me to have this anger -fury rise instantly & shatter balance. We are

(were)those mellow laid back hippie (LOL) types.

Sure I would rant in privacy at an injustice in this world, but then

I'd use that to fuel being pro-active.

I felt & continue to feel this new fury that I know is not effective

for the greater good. So I came here & asked for help. And you did

help me get through the meeting the teacher called to go over our

concerns.

Do not faint but I actually was not very talkative (OMG) & my not

talkative nor assertive husband was the main " talker " . I especially

tried not to as I was sleep deprived & in pain with my ruptured disc.

As the charming empath member of our marriage, I do not confront or

get aggressive or overtly assertive with others. At one point I

actually forcefully (for me) stated (blurted) that DJ would not

participate in deodorant or tooth brushing activities. At several

points my husband actually stated " I have to see that for myself to

believe it " .

The teacher acted like I never said a word about DJ already knowing

how to brush his teeth & currently did not need deodorant. She also

suddenly started talking about how " Mr. ___ " told her that these

were things that had to be addressed in High School. I had to ask

who this was...apparently it is the HS teacher or coordinator.

My husband later mentioned that she had said she was willing to

compromise about the deodorant (in my mute fury I missed that one-

good thing)

To my husband, she insisted that it was a " state " mandate & that it

was on the website when he stated he had to see this for himself to

believe it.

When I asked about DJ handling money she actually babbled on about

how she would never let DJ use " that " wallet as it was not age

appropriate & these kids had enough problems in society dealings blah

blah blah. She also proudly told us that she had a purse for the

girls to use & a wallet for the boys to use for community settings.

I was so astonished I think my mouth fell open. I did speak then. I

asked her why she did not share this with us back when school started

instead of now in January. I also mentioned that DJ chose which

wallet to take & this was his choice.

My husband also disputed her claim that DJ pays for things based on

his observation during lunch. And my observation that the change

from community outings would come home in a baggie with a receipt.

Folks, there's more but it was all smoke & mirrors. As well as

trying to completely argue anything we pointed out. As well as

completely ignoring our concerns or opinions. And the end result was

nothing except either serious listening issues or complete BS.

Because we wasted no time in trying to find that so called state

mandate. AND OF COURSE DID NOT. Next day, I was on the verge of

calling the Sec of Education when we got a response to my query as to

where to find this info on the state's site.

The info we received was a printed guideline (appears to be for

teachers) that has nothing to do with the state dept of ed website or

mandates. Those that teach will know about this & for all parents be

advised that some form of what we received is more than likely used

either in your own school district or by your teacher. I will find

out where this came from & let you know. Part of me wonders if this

is from her college days as there is no letterhead identifying the

source.

It is the Intellectual Disabilities (ID) Program Specific Information

that outlines philosophy, educational assessment, data collection,

prioritization of goals, instructional focus, behavior team.

It is a guideline. The one we were given happens to be for

moderate/severe/profound intellectual disabilities.

Again it is an outline. I know as I used to teach. It is generalized

& is not a mandate.

With this also came the worksheet she has worked up for step by step

tooth brushing. Which is actually ok but again, is not needed for DJ.

Also with this was the IEP Re-eval meeting forms to sign that

suddenly has morphed into the actual IEP with a ton of people slated

to attend. Ahem. With the date set for Jan 23.

His IEP is due in March. I would also think that a bit more time

would be necessary for evals & such. I know I need more time just to

gather medical letters or evals that they most definitely will need

when considering goals & services.

So here we go. We signed the line that stated that we would

reschedule. I made a copy. My husband & I got angry again in our own

ways. It took me a couple of days to realize that we had been

snowballed, stonewalled & perhaps patronized to by the teacher.

Today I realized that I do not know how to deal with my new anger

issue & am afraid I will go ape-sheet. Not good. So I am going to

see if there is an IEP advocate to advise us & attend the IEP with us.

I am also going to get a letter from every specialist my son sees

regarding any medical issues that certain environs, substances or any

factors that would impact him medically.

It is hard to put into words, especially so face to face, but I

personally feel that this teacher & perhaps the system's mindset is

not objective. That they are trying to do a one size fits all or fit

a square into a round hole.

And on a personal level, I find it outrageous that anyone would have

the gall to resist a parent's information or desires just to fit a

program. And then add insult to injury by using " age inappropriate "

in our presence.

What pray tell ever happened to FAPE, LRE, & Individualized????????

And how many of you can honestly say that you don't have a teenage or

adult in your life that say carries a Hello Kitty fad purse or an

anime wallet or a SpongeBob tshirt? Velcro shoes? Or hugs their loved

ones? Is an avid collector of super hero figures or Barbies? Or

that uses a routine that is relevant for them in regards self help?

Like electric razors or toothbrushes? A certain brand of soap or

lotion? Certain " style " of clothing or food preference? Or requires

modifications in their life-whether it be glasses, tub railings,

support panty hose, braces, pillows to sit on to drive or to work?

Why should it be deemed any different for our kiddos?

To me, it is NOT about making the DJ's of the world fit our

environments but rather our role is to modify the environments to fit

his needs.

Maybe I am way wrong about this but I don't care. This is what my

heartsoul always has said. Whether it be for the DJs or those that

are elderly or those with mental or other health issues or

disadvantages. Period.

Guys, if this is any indication of what High School & thereafter is

going to be like then expect to see me here often trailing mushroom

clouds...

Seriously, this is scary & it is very minor compared to what I

realize others have faced or do face.

To be invisible in the presence of others is horrid. But now I

really know what our kiddos & so many others must feel like & endure.

And without voice.

Hugs & deepest admiration to all of you. I will try to share what I

learn in hopes others find the info useful. I am especially grateful

for your support, outside of my husband I have no support systems-we

have only each other.

Unexpected joys to you,

Kris (who is once again preparing (tiredly) to hoist her

sword....poor sword)

[Guest guest]

WARNING: The following is blast from my soapbox and represents my opinion -

BEWARE>

Kris - my heart soul friend. I saw your email on all our beloved GA sites.

As you know I am even further in the hills than you are in N GA but I am but

a phone call away.

Now issues: Age appropriate. IF she is going to talk age appropriate -

where is personal hygiene in school age appropriate? I guess for some kids

in Life Skills classes who do not have those skills it might be

appropriate. But while THEY are learning that - why isn;t DJ working on

some portion of his IEP which requires 1:1 - like writing his name? or

identifying coins.? Or working on 5 pennies equals a nickle and 2 nickles

equal a dime, etc - get my drift??

As to wallet: Elie was still carrying - and at times still does carry one

of his favorite stuffed dolls with him on outings. Most of the time he will

leave it in the car and carry his headsets and tape player - but not

always. At least he isn;t walking with his blackberry texting (so rude)

while walking and talking! Nor carrying his cigarettes. Nor making (age

appropriate) inappropriate remarks to women. And Elie carries his own

wallet of his choosing - this year happens to be age appropriate, but if he

saw a Sesame Street one he would want it.

So what - his big mature neurotypical brother has Winnie the Pooh all over

his house (and he is 36! )

Meetings: NEVER meet with a teacher alone - I am surprised that you would

fall for this one Kris! All meeting need to be his full team. And that IEP

meeting scheduled early can be just a preliminary. I am sure you know not

to sign the document - you need to take it home and think about it. And if

you cannot find an advocate in Gwinnet to go with you, take a neighbor - or

a priest - someone who dresses up for the occasion, carries a note pad an

looks official. AND take a digital recorder.

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--

Sara - Life is a journey- we choose the path.