Re: (unknown)

August 4, 2008

Kathy,

We were noticing the starring spells and then I told the neuro about it on s first appt. She wanted to do an EEG. When they did it, that night the Dr called me and said it was abnormal and that they did see seizure activity in the EEG. I know what you mean though about us always second guessing ourselves. I do that too.

Stacie

Stacie, did they capture the seizure activity during his staring spell? My son was having staring spells and a abnormal eeg but he never was captured having them. My description of him staring and a abnormal eeg lead us to believe he was having seizures. He seems to have out grown them and now is off meds with a better eeg. But I was wondering since it was never captured was it seizures or just his condition of autism? I am afraid that it really wasnt seizures and I may have did him more harm with medication. Its just another crazy thought of mothers guilt. kathy>> ! What kind of seizure do you think he is having? had an EEG done in Oct and was dxed with a seizure disorder! He has the staring kind! I forgot what those are called! He is on Depekote!> Stacie B> Aurora IL> Sent via BlackBerry by AT & T> > (unknown)> > > my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .> I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded > with too much information and scare myself too death . Can he have one anytime and how do I sleep ? > Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

August 4, 2008

it on the 18th of this month . (unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

September 9, 2008

Hi,my children had reversals after potty training was well

established. I have been told reversals can come from medical reasons

and to always get them a physical. Sometimes the muscles ect involved

get a lack of nerve signal or change in the info. There may have been

a prompt dependancy of their own choice,not aware to us. Anyway could

you start agin with the method you used at 4yrs. You may activate

that learned behavior instead of having the challenge of something

new. I would use the same discipline you used successfully then

also,if you had one. She may not understand your reactions in

relation to not using the bathroom now but fall back to the well

mastered skill prior. Even though she is older now I have found my

own children rely on the tried and true methods of first time success

when ever there has been a set back in behavior.

Best wishes,

Tishanne

-- In AutismBehaviorProblems , ruepenn

wrote:

>

> We prepared a bathroom package that was kept in the bathroom to try

to entice our son to use the bathroom. This package was a box with

special things to keep him busy while he sat on the toilet and he

could only use them while on the toilet. New special (small) toys,

handheld video games, special interactive books, stickers, etc...He

was not allowed to remove them from the bathroom. We had hospital

gloves and baby wipes because our son was feces phobic. There was

always a diaper genie to dispose of the wipes so the toilet didn't

clog. Everything was " HIS " He decorated the box & diaper genie with

his stickers. Sometimes I would sit with him and read him a story or

play a game with him. He now uses the bathroom by himself...he just

won't flush the toiled for fear of overflowing it.

>

> From: Mooney <hmoonbeamyahoo (DOT) com>

> Subject: (unknown)

> To: AutismBehaviorProbl emsyahoogroups (DOT) com

> Date: Wednesday, September 3, 2008, 12:10 PM

>

> HI EVERYONE,

> IM HAVING A REALLY HARD TIME WITH MY DAUGHTER, SHES 9 AND HAS

BEEN POTTY TRAINED SENCE SHE WAS 4NOW SHE POOPS OR PEES ANYWHERE/WE

HAVE TO WATCH HER 24/7, IVE BEEN GETING HER UP AT LEAST 1 A NIGHT SO

SHE DOSNT WET THE BED.I FEEL AS IF IM COSUMED BY THIS BEHAVIOR ALL I

DO IS THINK ABOUT THIS ,IF AND WHEN IT WILL END.

>

September 9, 2008

We have tried this with a special bathroom package but he just lost interest so fast in anything in there even when I would change things in it!Stacie BAurora ILSent via BlackBerry by AT&TDate: Mon, 8 Sep 2008 19:30:01 -0700 (PDT)To: <AutismBehaviorProblems >Subject: Re: (unknown) We prepared a bathroom package that was kept in the bathroom to try to entice our son to use the bathroom. This package was a box with special things to keep him busy while he sat on the toilet and he could only use them while on the toilet. New special (small) toys, handheld video games, special interactive books, stickers, etc...He was not allowed to remove them from the bathroom. We had hospital gloves and baby wipes because our son was feces phobic. There was always a diaper genie to dispose of the wipes so the toilet didn't clog. Everything was "HIS" He decorated the box & diaper genie with his stickers. Sometimes I would sit with him and read him a story or play a game with him. He now uses the bathroom by himself...he just won't flush the toiled for fear of overflowing it.From: Mooney <hmoonbeamyahoo (DOT) com>Subject: (unknown)To: AutismBehaviorProbl emsyahoogroups (DOT) comDate: Wednesday, September 3, 2008, 12:10 PMHI EVERYONE, IM HAVING A REALLY HARD TIME WITH MY DAUGHTER, SHES 9 AND HAS BEEN POTTY TRAINED SENCE SHE WAS 4NOW SHE POOPS OR PEES ANYWHERE/WE HAVE TO WATCH HER 24/7, IVE BEEN GETING HER UP AT LEAST 1 A NIGHT SO SHE DOSNT WET THE BED.I FEEL AS IF IM COSUMED BY THIS BEHAVIOR ALL I DO IS THINK ABOUT THIS ,IF AND WHEN IT WILL END.

September 9, 2008

Hi, Ruepenn...respectfully, since you have been on for 18 years I'm sure you are aware that taking suggestions offline in a personal more intimate way is probably the best etiquette of all. We as mommies have enough stress and concern in our lives without being humiliated and or made to feel paranoid in "public". I too am not a fan of bold letters, nor am I a fan of exclamation points. I get your point and I think she will too.

e

(unknown)To: AutismBehaviorProbl emsyahoogroups (DOT) comDate: Wednesday, September 3, 2008, 12:10 PM

HI EVERYONE,

IM HAVING A REALLY HARD TIME WITH MY DAUGHTER, SHES 9 AND HAS BEEN POTTY TRAINED SENCE SHE WAS 4NOW SHE POOPS OR PEES ANYWHERE/WE HAVE TO WATCH HER 24/7, IVE BEEN GETING HER UP AT LEAST 1 A NIGHT SO SHE DOSNT WET THE BED.I FEEL AS IF IM COSUMED BY THIS BEHAVIOR ALL I DO IS THINK ABOUT THIS ,IF AND WHEN IT WILL END.

December 24, 2008

Well, you sound like one of the very few good, caring, willing to learn educators in the business, but they are rare from my experience. I am an in the education business myself and have been for 30 years. I am still presently teaching part time. I have a Ph.D. and I diagnosed my autistic grandson when he was almost 3; he is now 16. From the time he was 3 until he was 5 I had an ABA program with him until he started to school. I had the best consultant in the Dallas metropolitan area. When he started to public school (over my protest; I'm the mother-in-law), Karac was reading at the first grade level and was using five word sentences. It didn't take the public school long to make a verbal high function young man into a non verbal low functioning young man. They repeatedly reinforced autistic behavior and with the exception of his wonderful fourth grade teacher taught him absolutely nothing. He is now in the tenth grade and they have just now figured out that he is an auditory learner and is very capable of learning with the discrete trial method. Wow, what a surprise; all autistic children are not visual learners.

I fully believe if I had been allowed to home school Karac that he would be functioning at grade level. I pray that none of these young mothers have the experience with the public school that I had. Fortunately, I think the newer special ed. students in college now are being given more training and knowledge about autism.

I appreciate you being on this list, and I welcome any information that you might contribute.

Sincerely, Pat K

Thank you e,In regards to school - this group is very negative. Rarely (if ever) do I see a post saying how wonderful the school is or how amazing ____ is doing because of ______. I really feel like I have to defend myself as an educator in this group.When I joined this group I assumed it would be people posting challenging behaviours - such as "I have a child who is touching people inappropriately - does anyone have any strategies that have worked?". Which some posts are but there is also a lot of other stuff - maybe someone needs to start up a parent support group for parents with autism and that might be the better place to post things if your intent is only for parents. I have several students with very challenging behaviours in my class and I was hoping to get some ideas, however there unfortunately does not seem to be a whole lot of sharing ideas and strategies - instead when someone asks for help - they often get a reply that they have a child that does similar behaviour, etc. which yes its nice to hear that others are dealing with the same thing but to improve the situation there is not much help being offered.Also, I know I am going to hear a lot of flack about this comment from the group as a hole, but I worked with a family for 4 years in their home - went through the diagnosis and everything with the family which I know is tough. They also locked all the doors in the house and would only give access to certain areas of the house at a time (e.g., food pantry locked, etc.). A behaviour therapist came in to help the family and said that locking doors does not teach a child anything - because the second that door is left open - the child can get into whatever it was you were keeping them out of - which can be very scary, especially if it can be of danger to the child. Instead she said we need to teach the child to respond to "no" and give boundaries to where the child is and isn't allowed - easier said than done I know - but it does make sense. Real world does not have locks everywhere and our main goal is to help these kids become successful in the realworld. Obviously locking doors to the outside is a different story.In school we are not allowed to lock any doors because of fire regulations - this makes it tough when we have a runner. My team is fantastic and we have eliminated running behaviour from 2 out of the 3 students we had in our class last year. It takes a while but it works. I have many strategies for a variety of behaviour if anyone is interested in me sharing. Obviously every child is so different - there is no quick fix.Take care One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now.

December 24, 2008

Yes, Steph. those are good books, and I love this group. I have gotten a lot of encouragement and inspiration from you wonderful, intelligent, and loving young mothers. Pat K

Oooo, , I am really sorry but you will get a lot of flack from this group as a whole. (Not hole. You are a teacher?) This is a support group and although I don't always participate as much as I would like, this group provides more than I can possibly express in terms of support.

I am sorry that you aren't getting what you feel you should be getting from this group. I can recommend some excellent books which might help you tremendously. They are:

A Work in Progress: Behavior Management Strategies & A Curriculum for Intensive Behavioral Treatment of Autism

Playing, Laughing and Learning with Children on the Autism Spectrum: A Practical Resource of Play Ideas for Parents and Carers

Reaching the Young Autistic Child: Reclaiming Non-autistic Potential Through Communicative Strategies and Games

And finally, the best one which I highly recommend for you: A Real Boy: How Autism Shattered Our Lives - and Made a Family from the Pieces

An excerpt from your message: "I worked with a family for 4 years in their home - went through the diagnosis and everything with the family which I know is tough."

Really? No, I mean really???????????? I don't know if you lived with these people or just came in and worked with them on a daily basis. I suspect the latter which is why I highly recommended the last book. You honestly have NO idea how difficult it is to have an autistic child. None whatsoever, regardless of how many families you work with.

You know it can be tough?? Tough would be easy! I'd take tough any day of the week over what we deal with every day. I'm just wondering why you chose today of all days to share this message since you know how tough it is.

If you are a helpful, supportive teacher, the parents of the children you work with will certainly let you know. It must be frustrating to hear that people have such bad experiences with schools. But, like it or not, these are the experiences of people in this group. Yes, it makes a sad statement about the school system but I will not apologize to you because parents don't want sit quietly by while their children are excluded and left uneducated.

I love this group and (as I previously mentioned) the support I get is phenomenal. But to open my inbox and see this..... Well, what can I say? Better yet, what do you say?

Steph

(unknown)

Thank you e,In regards to school - this group is very negative. Rarely (if ever) do I see a post saying how wonderful the school is or how amazing ____ is doing because of ______. I really feel like I have to defend myself as an educator in this group.When I joined this group I assumed it would be people posting challenging behaviours - such as "I have a child who is touching people inappropriately - does anyone have any strategies that have worked?". Which some posts are but there is also a lot of other stuff - maybe someone needs to start up a parent support group for parents with autism and that might be the better place to post things if your intent is only for parents. I have several students with very challenging behaviours in my class and I was hoping to get some ideas, however there unfortunately does not seem to be a whole lot of sharing ideas and strategies - instead when someone asks for help - they often get a reply that they have a child that does similar behaviour, etc. which yes its nice to hear that others are dealing with the same thing but to improve the situation there is not much help being offered.Also, I know I am going to hear a lot of flack about this comment from the group as a hole, but I worked with a family for 4 years in their home - went through the diagnosis and everything with the family which I know is tough. They also locked all the doors in the house and would only give access to certain areas of the house at a time (e.g., food pantry locked, etc.). A behaviour therapist came in to help the family and said that locking doors does not teach a child anything - because the second that door is left open - the child can get into whatever it was you were keeping them out of - which can be very scary, especially if it can be of danger to the child. Instead she said we need to teach the child to respond to "no" and give boundaries to where the child is and isn't allowed - easier said than done I know - but it does make sense. Real world does not have locks everywhere and our main goal is to help these kids become successful in the realworld. Obviously locking doors to the outside is a different story.In school we are not allowed to lock any doors because of fire regulations - this makes it tough when we have a runner. My team is fantastic and we have eliminated running behaviour from 2 out of the 3 students we had in our class last year. It takes a while but it works. I have many strategies for a variety of behaviour if anyone is interested in me sharing. Obviously every child is so different - there is no quick fix.Take care

One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now.

December 24, 2008