I could use some help:
 

We are starting to do a newsletter for my work.

I was in Charge of the committee that came up with everything
in this.

Now I tried to get out of the writing of the topics. Sorry can't exactly
explain better.


But I'm supposed to be writing about this.

Epilepsy: Seizures Disorders.

I can't remember exactly what the girl that suggested I write it suggested.

But I'm going to put here what I've written. Want some ideas if it sounds good. I have to figure out how to add words. heehee





My son started having seizures in 1st grade, the beginning of the seizures and epilepsy was very overwhelming for our family. But I started to learn exactly what a toll seizures and epilepsy would take on his learning as time went on. And with other students who have epilepsy, that have uncontrolled seizures. When they have more and more seizures in the days at school, home and other places it takes a stronger toll on them. It can be not only on behaviors, attendance, but in many cases you start to see a decline in other areas. Such as reading, comprehension, and math even IQ with my son, his dropped about 15 points.
Considering that it can take 2, 3, 4 or more medications to attempt to control seizures. Which we know that taking even 1 medication can cause concentration problems. So taking so many more at sometimes high dosages will affect the way they learn. It’s very hard for our students to understand after having been A and B student all the sudden falling down to C’s and D’s or just barely passing. Schools believe that if the student is still passing they don’t need to do anything.
But we as advocate’s and parents need to remember these are some of the Kids that are left on the side. It’s imperative to work through and find a plan for these kids. We as advocates need to know that students having seizures at school, they need a plan so that they can stay and learn. Being sent home is not the answer. Not being allowed to go to school because of seizures isn’t the answer. They may start to fall further behind, and need to learn differently. But they still have dreams, and can reach their dreams. It’s sometimes necessary to learn to reach their dreams in different ways. Sometimes changing what they are after. We as their advocates have to help their teams learn to dream with them in a different way. Such as if they wanted to be a Veterinarian, but now can’t or won’t be able to get a Diploma, maybe they will be a Veterinarian Assistant in the office. Doing things that are needed in the office, like cleaning, walking the animals, and all things that they are taught. Or say they wanted to be a Chef, but now they aren’t going to be able to use a stove. Maybe they can still do something in this area. If they can work with the ingredients, they can get things ready, and the other person put it in.


Donna:grouphug:

I would delete some "dots"... (.)

You can put commas if you want to make pauses... other than that, and as far as my eyes let me read, I like your post Donna :)

I think you wrote a good letter.
bizi

Donna,

This is good. I read it but I can't get back to you about suggestions tonight. I'll be back here tomorrow night.

I need more information:
1. who is going to read this? the general public? parents? teachers? people who can change the schools?

2. what is the purpose? Is it to make people do something differently? is it for information? ???


M

Thanks to you three, and others


1. WHo will read, This newsletter is going out to our Parent Support
Volunteers. These are the men and women we have trained to help
us in the schools. They can help parents, go to fair, do trainings.

2. What is the purpose? Its mainly for information. In the case of Epilepsy and seizures, though it hopefully will help our advocates as I call them. Make some changes in the schools. At present it isn't unusual to get calls from parents that a school is trying to throw a student out till they aren't having seizures anymore.

Donna

Considering that it can take 2, 3, 4 or more medications to attempt to control seizures. Which we know that taking even 1 medication can cause concentration problems. So taking so many more at sometimes high dosages will affect the way they learn.

I thought maybe an example below may flow the way you want. But, I am lousy at writing and am reading challenged.

The combination of multiple medications in high doses will strongly affect the way they (who) learn. We know that taking even one medication can cause concentration problems; now consider the affect of taking the two, three, four or more medications can have on concentration levels.

Yep, Di-Marie

I have to admit, its been something my son has lived with for
probably 8 years or more. He takes 3 medicines currently.

And has for many years. Since I believe 4th grade when hallucinations
started. It just was 4 or 5 at one time.

So we will see, I do know its part of the reason he had such a big
fall in his memory and IQ for lack of the right word.

Donna:grouphug:

Donna, it gets your points across. There's nothing misleading or inaccurate. I used to edit this sort of stuff but it always lost the personality of the writer. In your case, your personality, which shines in your writing, elevates your story. It's not all "proper" grammar. It's a powerful testimony.

I would go with the powerful personality myself. I'm thinking everyone else agrees. Be you. Don't worry about the dote & dashes.

Thanks to everyone.

Its more that I can't come across as rambling.

I have done that in emails and its not good.

heehee

Donna:grouphug:

What CarGirl said................... i've been afraid to contribute because my tendency would be to overhaul what you wrote into a more structured document. :o

i did like DiMarie's edit of the bit on the multiple medications.

i will venture a couple of comments on structure i guess... i would break up the last part into sections (paragraphs). I see two themes:

1... specific problems that arise either directly due to seizures, or due to medication side effects

2... concrete ways in which schools can help students with epilepsy progress and achieve, using alternative methods, rather than throw them out of school.

the content you have is good, as is, but i might also like to see a brief section (perhaps ending paragraph and segue to the throwing out of school bit) something to the effect that this throwing out is overt discrimination and violates the Americans with Disabilities Act (ADA).

thing is, i am not sure how long this piece is supposed to be. that too will determine how much you put in, and how much you elaborate on various things.

you might also want to have a chat with Porkette about this. she posts here on the Epilepsy forum. she is a teacher for students with special needs, and suffers from epilepsy herself. she doesn't take bs from anyone when bad stuff goes down in school. :cool:

~ waves ~

Thanks all

Its supposed to be 500 to 600 words I believe.

I have no clue how many I even have.

Donna:grouphug:

you have room to play. i just plopped it into MS Word and did a word count:

431 words as is, unedited.
433 words substituting in the bit that Di edited.

~ waves ~

Here is my effort
 

Donna,
I think I made this shorter without meaniing to. I tried to make it smoother. I provided to suggestions to make it longer.
I am assuming that someone else is writing a section about disabilities and the law. Your piece is supposed to be about your experience. Is that right?

Anyway, I hope this gives you some ideas of what you can do.

Mari

My son started having seizures in the first grade. When the seizures began our family felt overwhelmed. (add two or three sentences here about how bad things were) I became dispirited to learn exactly what a toll uncontrolled seizure and epilepsy would take on his learning. Later I learned how other students with epilepsy also face difficulty learning in school. The seizures affect behavior, attendance, and noticeable difficulty in other areas such as reading, comprehension, math, and IQ. My son’s IQ dropped 15 points after he started having seizures.

We know that taking even one medication can cause concentration problems; now consider the affect of how taking a combination of two , three, four or more medications can have on concentration levels. It is hard for us to watch children who were A and B students face the disappointment of low grades of C’s and D’s after the onset of debilitating seizures. Without intervention from advocates who can promote tolerance as well as specific teaching and learning strategies, these students might fall further behind. When schools fail in their responsibilities to their students by sending them home becauseo f the seizures, they fail in their responsibilities to their students and to all of us in the community.

(Perhaps add a paragraph about what schools can do,)

As advocates and parents, we need to remember how these young people are left behind. It’s imperative to work together to find good plans for these young people . For example if a student at one point wanted to be a veterinarian but cannot get a diploma, he or she could work as a veterinarian assistant in the office performing such tasks as cleaning, walking the animals, and other valued duties. Perhaps a student wants to be a chef but cannot because of not being able to use a stove. He or she can still do satisfying work in the kitchen by preparing the ingredients, getting things ready, and assisting the other people in the kitchen.
Together we act to ensure that all students can reach their dreams.

Can't remember what we call this section.

But its a monthly newsletter and each month we are spotlightling
for lack of a better word. A specific area.

This is the one my co-worker that is sperheading the newsletter
now. Thought I would be good for.

I believe there is one for ADA in another month.

I can't remember.

Donna:grouphug:

Well its a final copy, don't have a copy yet.

But will soon.


It was liked pretty much like it was. With some help from my
friends here.

Thanks Di, and the rest.

Cant remember who all. You can though.

Donna:grouphug:

New Subjects:
 

First I had emailed Derrick's teacher about him being gone tomorrow
for a doctor's appt. I got back more than I expected.

It seems he isn't having a good start to the year. He is irritated and
short with the adults and the kids. I can totally understand why one
of the kids. But I'm worried. This is the worse, he doesn't seem
like he wants to be there.

I'm hoping its more because he has the allergies reaction than anything
else.


Then of course I can't seem to get my husband out to work, or the
other two boys. Its irritating, I just want them to all go to work.

I didn't think it was asking that much. ugh, thanks for letting me vent.


Donna:grouphug:

I hear you loud and clear!
maybe you need a family meeting?
bizi

Could they be depressed?
 

They all sound as if could be suffering from a significant depression. Are they?

Hmmm,

Dale, yes
Danny, Yes and no, he goes back and forth. And has always with
depression. Right now though he wants a job. Has even put in
a application or two.

Waiting for his dad to go start the jobs right now.

Devin, Well he is depressed about the job situation. But I don't think
anything else.

But I don't know how to help him. I know he needs to apply to get a job.
But he doesn't feel like he is getting anywhere trying right now.

So its going to take him, finally being ready again. Also he doesn't like the work for my husband as well, so when that starts it will be better.
For him going out and finding.

His is a wave, he just needs the next to start. But our area needs to pick up for regular people to get jobs again. I think he is burned out on temp places.
And I know he will go back there. But its going to take a while.


Derrick, NO, He is just Derrick.

It will clear, I think he just is feeling everything. Even my pressure from life.
Things need to take a change for the better.
He also is needing to make a decision for a job choice and he doesn't know.

So its hard, but so is life.

donna:grouphug:

Dear Donna,
Remind him that he is going to have more than one job in his life. The decidion does not have to be perfect. It had to be good enough for how.

M.

Maybe it's time to institute corporal punishment in your household ;)
(for your hubby too)

Final Copy: Thanks a lot!!
 

Here is my final copy for my article I think it looks great.

My son started having seizures in 1st grade. In the beginning, the seizures and epilepsy were very overwhelming for our family. As time has gone on, I began to understand the impact the seizures and diagnosis of epilepsy would have on his education, with other students who have epilepsy and uncontrolled seizures.
When students have an escalation of seizures at school, home, and other places it takes a far reaching toll on them. It not only influences behavior and attendance, but in many cases you start to see a decline in areas such as reading, subject comprehension, math, and even IQ. I experienced this with my son as his IQ dropped about 15 points.
The combination of multiple medications in high doses will strongly affect the way students learn. We know that taking even one medicine can cause concentration problems; now consider the effect that taking two, three, four or more medications can have on concentration levels.
It’s very hard for students who have been A and B achiever’s to understand and accept sudden decline in grades to C’s and D’s. In some instances, the decline challenges to just barely passing or failing
Schools believe if students are passing they don’t need intervention. This is unacceptable to us as parents and advocates. As parents and advocates we need to remember these kids should not be left on the sidelines. It’s imperative to work through and implement an education plan for these kids to keep their long term goals in life.
As advocates of students having seizures at school, we need a plan so that students can stay and learn, being sent home is not the answer. Exclusion from school due to seizures isn’t the answer; students will only fall further behind. However, by implementing accommodations we accept the need to learn differently.
Students have dreams and goals; they can achieve these by the team work of those in their lives. For example, if they wanted to be a Veterinarian, and that goal is challenging, maybe they can be a Veterinary Asst. Our student can perform duties in the offices, such as cleaning, or walking the animals, through accommodated related training they receive.
If students desire to be Chef’s, and it may not be reasonable to use the stove, consider a related job in this area. If they can work with ingredients, we know there are positions as prep persons who are getting organized and ready. Our students should learn from their educational providers the importance of these positions.
All students have dreams; schools should accept our combined dreams and be stronger partner in the meeting these goals. Students do not deserve to be left with just a “get them through” attitude from educators.
Education is provided for every child to help them pursue their dreams; just because of a disability the dreams should not be deterred by educators. Instead, challenge your educators to implement the most appropriate plan to meet educational goals and provide the network of support to achieve those dreams.

Oh yeahhhhh!
 

Donna,

this is great. i love the build up towards the end. it really packs a lot of positive punch... great job!!!

PRINT IT, PRINT IT!!!

:yahoo::trampoline::Dancing-Chilli::Head-Spin::winner_first_h4h::sing:

Super good job, Donna. Really impressed by your re-working.
Congratulations!http://neurotalk.psychcentral.com/im...iesc/yahoo.gif
http://neurotalk.psychcentral.com/im...ing-Chilli.gif


P.S. Im an old lady. Can't party like that young whipper-snapper ~ waves ~ .

Can't take the credit.

I had help from some here. And a co-worker who corrected some of
the things that needed for our purposes.

But I love the article now.

So its great.

Thanks all for your help.

Those that helped more, really thanks, you helped me look so
good.

Donna:grouphug:

Donna,

Nooooot so fast!!!! the article has your spirit to it.

so you bet your boots you can take the credit!!!

ready or not, here it comes

** CREDIT **

|
|
|
V

** Donna **

there, i just plopped it in your lap. you're stuck with it now. ;) :hug:

~ waves ~

Had to come back and tell you. On Tuesday during my Skype
with my Supervisor, She told me she loved the newsletter column.

So I succeeded in the final part that I really wanted to.

I am working to put together much better emails, and notes
to others now.

Donna:grouphug:

YEsterday, and then today
 

Okay, I got a phone call yesterday.

And I was not a happy camper with the notice. But I was happy about the call. Being that I had been the One in charge of the Newsletter committee.

And I guess in the next few days, too the next month the first copy of
the Newsletter is going out.

THey are looking for the other articles that go in the newsletter.

One of these article's is the PSV(Parent Support Volunter) of the Month.
This was my idea. Because I don't feel we honor our Volunteer's enough.
And when the discussion for the article's came out recently and I had
missed the meeting. And I haven't been involved in this finalization.

I worried they dropped this. So I had asked. And had been assured it
was still there.

Well yesterday, the girl in charge, in South Bend called me at 2:30pm.
Lucky really to get ahold of me. I was supposed to be off. Derrick
had a Dr. Appt. And I had just gotten back home.

But it turns out they chose to use my PSV as the First PSV of the month.
And she wanted it by 1pm today. She was sorry, it had just dawned
on her she hadn't given me this item to do.

Could I send her the information on my person so they would be able to put it in the paper. I knew it was going to be hard. I usually need to think on these. For days, but had just a couple of hours. Because I wasn't going to be home this morning. SO off it went last night. And I am hoping she cleaned it up good. Then she dropped the big bomb, they wanted a picture.
Well gosh, how was I going to help with that. I suggested our boss, call the lady and ask. So when I got a email today, saying she was sorry for the short notice. She also let me know that they had called and asked for a Picture.


So today when I was talking to my Supervisor, I learn it seems I didn't
do something one of my parents wanted. And she isn't comfortable
working with me. Wants to see if one of the volunteers can work with
her. I think I may have a idea, but can't remember the name who.

But if my Supervisor, gets a hold of the few I know can do this. I think the lady is in for a surprise. Most don't work as well getting accomodations as
I do. If I didn't get what she wanted, something was up.

So I hope that my one advocate can take this case, she would be the best.

Donna:grouphug:

And for once, I'm not going to brow beat myself. Just realize I can't be superwoman.

Well you know that we know that you are a fantastic woman!
and we are very proud of your work that you are doing.
Know that that you are a wonderful mother and work so hard to keep your family together.
:hug:
bizi

Bizi's got it Donna,

and for what it's worth, even if you do not get everything perfect every second of every day, I DO happen to think you are superwoman!!!!

i really admire you for who you are and what you do. you are one heck of a gal.

:hug::hug::hug:

~ waves ~

Thank you to you both.

I am having some problems right now.

If my husband finally in the next couple of weeks.

Gets a long term, (3 or 4 month job)

I'm going to take a short vacation, from work.

I've determined that is part of what I need.

But part of what I need is no one home, but me.

So I am waiting till it happens. If it doesn't soon, then
I'll deal and take the time with him around.

Donna:grouphug:

Gosh, Donna, when did a 3-4 month job qualify as long-term? Or is just how long it takes you to recoup?
I hope it works out for you that hubby's actually gone ....
it's so exhausting to ignore a person you really cannot stand at the moment!
:hug:http://neurotalk.psychcentral.com/im...onsb/heart.gifhttp://neurotalk.psychcentral.com/im...onsb/heart.gif:rolleyes:http://neurotalk.psychcentral.com/im...onsb/heart.gif:rolleyes:

Dear Donna

I hope you DO get the chance to stay at home on your own for a bit.

you are usually so busy and taking care of everyone else's needs.

And not to say they don't appreciate it, but i can't help but wonder, maybe after a while it comes sort of automatic for you, and for them too? So then YOUR needs aren't really considered, until you get exhausted and then, WHAMMO... YOU can't help but realize it. I'm not saying i think they are inconsiderate in an ugly way, i just wonder if maybe it doesn't cross your family's mind how much you put out, and how much it requires from you day after day after day after hour after problem after issue after.... etc. I think that is pretty staple in families too.

So yeah, you listen to your own needs and take care of yourself as you would any other member of the family. Get Donna what she needs. ;):) ... a vacation including time off from under all the hats you wear between work and family and even extended family!

Keeping you in my thoughts and prayers, Donna, that you do have occasion to "pencil this in" for yourself, good and proper. :circlelove:

~ waves ~

Car Gal

In our area the Union's have been laid off for a very long time. My husband
is a electrician. He has been laid off by his union for at least two years.

Other than for short call's which is 2 weeks or less. Or once in a while
he will get a job for our Electric company, but that isn't really counting
since he doesn't make that much money.

But he has been watching a couple of places that he would be a traveler
and they have lots of work it seems. So we are hoping.

There's a chance it could turn longer, which would be great.

I had a nice massage today. Hoping it turns out to be the biggest thing
I needed.

Donna:grouphug:

I am very glad that you had a nice massage today!:)

The massage sounds wonderful, Donna. I hope the effects last a while.

(((hugs)))

~ waves ~

Why is it when my husband finally starts to think he might want to go
out to dinner I don't feel good. I've felt bad all weekend.

I'd love a nice steak, But not this weekend. Ugh.


I am really mad right now, I tried to be nice and help out a client.
He needed some help with a cat that needed to go to the vet.
I originally was going to take the cat. But he just wouldn't let
go of it for good. So it wasn't going to work.

So I helped pay its vet bill. He wasn't supposed to tell anyone,
but someone called the vet. And they told this person who paid
them. I thought he had told them. That it was not to be given
out who paid the bill. Just a friend.

Now I could get a earful, from someone. This is my case that the natural father, has lost his kids to foster care right now.
TO me it shouldn't have mattered. Ugh.

Donna:grouphug:

no good deed goes unpunished.....:(

I sent out a email yesterday. I have decided to take a month off this
case. This dad, isn't working with me anyway.

I am regrouping, from a illness this weekend anyway. So I didn't lie.

I am really taking two weeks to do mostly Vacation and in-service.

Then if my plans are like they should be, the next week I'll take a
vacation at home. And the next will be the same.

I have to work one day of both. But that way I have 36 hours I think
of banked hours. SO I can take the two weeks banked between
them.

I have 24 each week. So it should work good.

I then will be to the week I think I told them. I can work case conference's
or meet with other parents. As I chose or turn them to my volunteers.

It will be more my choice.


I can also spend that time helping Derrick.

I'm just waiting on the final ingredient. Dale getting a job.

Donna:grouphug:

Oh Donna,

i am so sorry you went through all that with the kitty and then the breach of confidence via the vet's (seems like a confidential sort of thing to me, but probably not legally and i guess they weren't informed or it never got noted in the chart.)

I just hope that you do NOT get an earful, that the foster parent will sort things out... between them and whomever might have a problem with your help.

I hope your husband's mood to go out for a steak last's long enough that you will feel well enough to take him up on it too.

WE are supposed to have a steakhouse outing soon too. we found an american-style steakhouse near us... there are a few differences in the dishes but it it's close enough so we like it well enough. we've been twice so far. We appreciate the spaciousness and informal atmosphere there too. Plus I get a chuckle every time because they have a young-sized statue of a cow at the entrance - I always stop to pet it! hee hee.

i too am concerned because i do not know if i will be ok enough to deal with the stimuli. I am not leaving the house right now. Being a family type restaurant there's high risk for at least one screaming kid... nails on chalkboard for me. so i guess we'll see.

:hug::hug::hug:

~ waves ~