Re: Beth

[Guest guest]

Hi Beth,

It was great to hear from you and get an update. Happy 90th Birthday to

Nonni! I hope Ben gets through this screaming and changes direction soon.

I

can hear your frustration. I inquired about AIT for Zeb last year thinking that

it may ease his anxiety issues possible the same as Ben. The AIT person

told me that initially many children get very irritable and have aggression.

I decided not to risk it. After the program progresses it turns around. I hope

you will see this soon. I will keep Ben in my thoughs and prayers.

Charlyne

Mom to Zeb 11 DS/OCD

[Guest guest]

In a message dated 2/12/04 9:15:23 AM Central Standard Time,

writes:

> I KNOW this is puberty driven, and I KNOW he needs to tell us what he

> needs in other ways than yelling or screaming. He can tell us " Leave

> me alone " but then he can't be left alone indefinitely. He can tell

> us " Quiet voice " AFTER he yells. It's actually funny some of the

> time, but it's no longer funny at school.

>

> He is much easier to be around at home, but it's work taking him out

> and about if he starts to yell. It's quite simple to consider that

> he has taken charge of things for himself- but not in a way that is

> going to get him friends or understanding. In every way he is doing

> the " you're not the boss of me!!!!! " So if typical kids go through a

> raging puberty time like this, and parents tear their hair out trying

> to figure them out- what on earth am I going to do now?

>

> On the bright side of things, I ordered " Handwriting Without Tears "

> for us to use at home. He is finally getting this at school too. I

> had always heard how good it is, but I had NO idea. Within two weeks

> of " building " letters using the wood pieces, he was able to write

> more than an O and a T for the first time. He is able to write

> several of the capital letters now, and for the first time I am

> hopeful that he will be able to write his name.

>

> Also, I decided to go ahead and try the " Therapeutic Listening " which

> is a home version of the Auditory Integration Training. I figured

> maybe it would help with the screaming somehow. Well, after four

> weeks, it hasn't done much for the screaming, but he just seems to be

> picking up new concepts more quickly. But it might also be because

> I'm doing more academic stuff at home with him again. I mean, there

> is nothing like repeated practice! (He listens to these special

> CD's through special headphones that change certain frequencies in

> music. It's supposed to change hoe the brain takes in auditory

> information somehow.) I wouldn't recommend anyone rushing out to do

> this at this point. I just can't tell for sure, and the OT that is

> helping us with this said that we might not see changes for several

> weeks. If nothing else, he will tolerate wearing a fanny pack with

> the CD player in it and keeps the headphones on for 30 minutes- so

> that alone is fantastic.

>

>

Hello, I miss your posts. also has a yell thing that has kept him in

hot water at school a bit but he is in a more self-contained setting and the

other kids really don't react to him much. It keeps him isolated from more reg.

ed. though. He has had a lot of behavior challenges this year. Last year was a

peach compared to this one. Of course, his teachers and educational assistants

are all having babies and pregnancy problems that keep bringing subs into the

room which triggers .

's yelling and the old behavior or swearing (that the yell has somewhat

replaced) seem to happen more when he is tired or over stimulated. Of course

it works well to get a reaction out of his three year old brother so that

reinforces the whole vicious cycle.

Anyway, just mastered all the upper case letters in Handwriting without

Tears. Quite a feat for him. I really like that program. We never did the

wood letters, didn't want anyone to get hit by flying pieces.

We tried the auditory training with the headphones at home. It actually

increased 's behavior and we had to discontinue it. I will never get this

kid.

LOL!!!

Next year is on to high school so I'm sure he will come up with some new

behaviors for his new school.

Good luck,

Karyn

[Guest guest]

In a message dated 2/17/2004 9:08:32 AM Eastern Standard Time,

ppaul1@... writes:

> I am not sure that we are seeing anything significant yet with the

> AIT. There hasn't been an increase in undesirable behaviors, and

> it's possible that his new spurt of language use has something to do

> with it.

Hi Beth,

It's great that Ben has increased language. You will never know if it's

the AIT. I know that it is supposed to increase focus. Zeb has had his best

year yet despite this past week. We are on winter vacation break and I am

taking a break myself to sit and think logically. I have a meeting Monday at the

school with the entire staff etc. I am working on the agenda and making my

mental plan as to consequences. I will wait to hear what they all have to say

before I plan the next move. I am stunned that the staff made these mistakes

with

the attorneys in the shadows. The staff will most certainly be mandated to

additional training. I am considering requesting the aide to be replaced and am

sending a complaint to the state nursing license board. I have had issues with

this nurse since Zeb began kindergarten. Zeb did have a medical plan attached

to the IEP to insure this did not happen again. The pediatrician wrote another

detailed scrip today.The meeting will decide what direction I will take. I

have had more than my share with school but the district has come so far. I have

to keep moving forward. These past incidents are so well documented I doubt

that I will be forced to take any legal action. I do believe that the central

office will do what they need to do with their staff. I wouldn't want to be in

their shoes. I feel terrible that Zeb had to endure this abuse by the nurse and

the blantant discrimination of the school staff. The district had been

targeted by the state as one of the least compliant districts in LRE. They would

only discredit themselves if they did not take action. I do believe everything

happens for a reason. Good will come from this. Thanks for thinking about us. I

hope you can find a solution with Ben's behaviors. I have had the same

with Zeb in the past. If it weren't for the ed consultant versed in behavior

his life would be a mess. I am praying that his anxiety issues do not

resurface with the problems this week.

Charlyne

Mom to Zeb 11 DS/OCD

[Guest guest]

In a message dated 2/18/2004 1:33:40 AM Eastern Standard Time,

charlyne1121@... writes:

The district had been

targeted by the state as one of the least compliant districts in LRE. They

would

only discredit themselves if they did not take action. I do believe

everything

happens for a reason. Good will come from this. Thanks for thinking about us

Good attitude Charlyne!!!! Keep us posted on how you make out at the

meeting on Monday. And we'll pray that Zeb's anxiety behaviors don't return

due

to this event.

{{{hugs]}}

Donna

[Guest guest]

Hi Beth,

What a gift to be involved in such a supportive group. The list has certainly

provided me with the reflective time that I need to collect my thougths.

Situations that involve our children become extremely emotional and often

dismiss

our listening skills. I have had to train myself to do this for my emotional

well being. If I am not stable and logical how could I be an effective advocate

for my child or any other child. I am privledged to be part of this group and

have a wonderful support system in the legal area. Zeb's attorney is a parent

of a child with DS, is a degreed social worker besides an attorney. We think

and discuss a problem as parents, write our solutions and come together to

solve the legal aspects. Life is so hard for all of us. We need to rejoice and

be

thankful for the simply fact that we have each other because of our children.

Our children have made us better people. I have to remind myself of that

often.

Charlyne

Mom to Zeb 11 DS/OCD

[Guest guest]

Charlyne (and All),

I loved your line about " I am taking a break myself to sit and think

logically. " I think it can be one of the most important things we do

when things go awry- or even when they are going great.

One of the most helpful things I did for my own mental health a few

years back was to participate in an Action Learning Group with other

parents of kids with disabilities. Some of the women I knew, some

were new to me. There were just 8 of us, and we met once a month at

a hotel. The facilitator of this gathering was from out of town, and

a grant paid for her costs at the time.

Instead of the usual parent organization- help- thing, where an

" expert " comes in to talk to parents and then they have some cookies

and coffee, this was closer to a mini-retreat for me each time we got

together.

The way it worked, was each person talked about a " burning question " -

what was eating us up at the moment? The facilitator used graphics

to take notes- great way to think about using visuals : ) on a big

piece of paper. Great emphasis was put on listening carefully to

each person.

Then there was discussion around each of our " burning questions " . At

the time, I was very angry about our school situation, and wanted

Pete included, but his behaviors were making it difficult... (gee,

sound familiar??? <G>) Most of the moms had their kids included, but

everyone was coming from different places with that issue. While

this was not supposed to be " What you should do is.... " session, it

was in actuality " What helped me get through a rough times was...... "

What I discovered was a safe place to talk about the toughest things,

and to discover that even the families who seemed to have it all

together had gone through many struggles. Some of the common things

that they talked about were just the things we talk about here-

-strategies for going to IEP's (never, ever go alone! Ask a friend!)

-ASK FOR HELP

-take care of yourself

-take a break from therapies

-give yourself permission to not be " ON " all the time

-(one Mom said she took a year off from being the advocate Mom for

her daughter at school. She said, " Since I knew she was finally in a

safe class/school, I took a break from doing everything. "

-Think about other ways to measure success when progress seems to be

a far-off dream.

The way the rest of the Action Learning Process worked was that after

we posed our burning questions, we each went around and suggested

some action that we could take to deal with that issue. (IN other

words, we had to pose a solution to our own problem- ) Then we ate

comfort food- (there was a kitchenette in the room)- homemade soup

and bread, chocolate, wine, and chatted about whatever.

No phones. No kids. No spouses. Almost a slumber party.

Did I look forward to those meetings? You bet!

The way the process continued was that between the meetings, we were

to take some action (as discussed) on our burning question. Then we

were to reflect upon what happened after taking the action and share

that at the next meeting.

At the next meeting, we were to bring some kind of gift for each

person. Sometimes it was a piece of writing, or a a quote, but

sometimes it was bath salts, or a candle, or some gift of food.

The thing that happened over a five month period- five meetings- was

that we formed very close bonds. We learned to REALLY LISTEN! (hard

for me, who loves to talk, <G>) and find the common threads that were

running through our conversations.

One of the biggest things that happened for me was in the sharing of

" successes " . These were mostly little, tiny stories of some new

understanding of our kids, or a new way of thinking about

achievement, or figuring out a novel approach to a tough issue.

These were not stories of how someone's child starred at the dance

recital, or was the best at anything. These were those baby-step

things that are often reflected here.

As the months went by, I felt my anger melting away about some

things. Often, we came back to the meetings with more burning

questions, but also a new desire to STOP and THINK.

When we are always in emergency mode, or it feels like we are, that

can be so hard to do.

One of the things that I remember discovering about myself at that

time was that taking a break- even taking Pete out of school for a

day or a week- sometimes took the pressure off of all of us so we

could breathe again.

Right now I feel as though I am coming our of a bad slump. But

spending more time here with my list-members reminds me of the sheer

goodness that is here. Reading the posts helps me to look for the

burning questions that we ask one another every day. People then

post the actions that they took. And so very often, people write

back to reflect on what happened to them as they were walking through

the fire.

" I am taking a break myself to sit and think logically. "

Well said, Charlyne! I hope all of us get even a few moments today to do that.

Then you can come back and share our reflections here! <G> And

we'll feast on virtual homemade chicken noodle soup, topped off with

a piece of chocolate cake and some Ben and Jerry's. Well, maybe some

wine, or whatever strikes your fancy.

God Bless Us, Every One!

Beth Mum to Pete (AKA Ben, PB) age 13 Central Ohio

>In a message dated 2/17/2004 9:08:32 AM Eastern Standard Time,

>ppaul1@... writes:

>

>

>> I am not sure that we are seeing anything significant yet with the

>> AIT. There hasn't been an increase in undesirable behaviors, and

>> it's possible that his new spurt of language use has something to do

>> with it.

>

>Hi Beth,

>It's great that Ben has increased language. You will never know if it's

>the AIT. I know that it is supposed to increase focus. Zeb has had his best

>year yet despite this past week. We are on winter vacation break and I am

>taking a break myself to sit and think logically.

> >>

>Charlyne

>Mom to Zeb 11 DS/OCD

>

[Guest guest]

Hi Beth,

Good to hear that Pete is doing better in school. I bet you have your hands

full with the new addition. How is Nonni doing? I happened to think of her

today after Zeb locked his grandmother out of her house today. He makes me crazy

at times too.

Charlyne

Mom to Zeb 11 DS/OCD/ASD?

[Guest guest]

OMG, poor nanni, the most nathan has ever doen is lock us out of the car,lol.

it wasnt for too long i hope. shawna

[Guest guest]

Hi Beth,

Loved your update and happy new year. Hope your weather situation improves

and your remodeling if finalized.

Charlyne

Mom to Zeb 12 DS/OCD/ASD?