Re: Restrictive devices for children with self abusive behavior

[Guest guest]

First let me say that I personally think you are dealing with some ignorant,

hmmmm, 'donkeys'! Of course, in California they go by a different name.

Several students in Evan's school wear helmets. He has one on his bus and at

2-3 in his class. I get Respite from our Regional Center for Evan and not

because we are embarrassed to take him out in public but for ME to have a

break from him and this house! I get the maxium allowed here because that I

also take care of his brothers and they have problems of their own.

The respite is for Evan alone though, only if I get out of the house who

cares who it is for. Also, they pay it to his grandpa or any other relative

other than their mom, dad or stepmom or stepdad. These people are assumed to

be able to do it just because their are the parents.

And it sounds as if you need this respite a 100 times more than I do. I'd

like this woman who told you this to spend one hour with your child and

still tell you that you do not need 'babysitting' money.

Back to the helmet. I cannot comprehend the school's attitude. So your child

can beat his brains out banging his head and that is all right? I cannot

imagine how you are maintaining YOUR sanity through all this. Here I thought

New York was much better than California in helping children with autism.

Your story is just a reminder that there are dimwits all over.

Betty

Restrictive devices for children with self abusive

behavior

> I have a six year old autistic son. His name is .-------------- Let

me know what you

> think!

[Guest guest]

This is hard to believe!! I thought the law required a one on one aide for an autistic child. Karac has had one every year since first grade. Why would any reasonable person not want to protect a child with a helmet? It seems like such a simple solution. Does your child resist wearing a helmet? Have you tried a medication? Karac is 11 and became abusive last year. He bit his arms and mine, but he has been on Geodon and it has been three months since he has bitten me. My arms are finally healed! You are one strong mother. God bless, Pat K

[Guest guest]

The school just put CB in a harness for the bus, and I tell ya He went crazy ! So, the bus driver has him sitting behind her and telling the other kids not to invade his space.Will let you know how that works out. I just read in the paper that the schools here in CA are going to hire lawyers to represent them (public schools) in addressing the needs of special children .We had to fight for the smallest things and then the school wouldnt follow though , I think you should contact an attorney that specializes and dont forget to have the school pay for that too ! As for respite care , I wish we all lived close by, It sounds like to you need a little time off.My kids offered me the repite care money , but we chose not to take it as it is considered a private vendor and they will tax us so high it wouldnt be worth it. I have CB everyday after school and when he isnt at school, the full day. But in all fairness CB and I are extremely close and we understand each other, but we still have the "rough days".

CB's Granny

[Guest guest]

the law required a one on one aide for an autistic child

-- if only it was that simple. Some school districts make the parents fight for every little thing that they child needs.

A child is like a butterfly in the wind, some fly faster, some fly harder but they all fly the best they can. Each one is different, each one is beautiful and each one is special.

Re: Restrictive devices for children with self abusive behavior

This is hard to believe!! I thought the law required a one on one aide for an autistic child. Karac has had one every year since first grade. Why would any reasonable person not want to protect a child with a helmet? It seems like such a simple solution. Does your child resist wearing a helmet? Have you tried a medication? Karac is 11 and became abusive last year. He bit his arms and mine, but he has been on Geodon and it has been three months since he has bitten me. My arms are finally healed! You are one strong mother. God bless, Pat K

[Guest guest]

Wow...thank you all for your input. I just wanted to respond and try

to answer some of the questions you all posted...

First Id like to respond to the question about obtaining a lawyer. I

did not seek out any legal advise just yet, but I certainly plan to.

We are working with an advocate lawyer who is from a non-profit

agency. Her services are free and she seems to know the legalities of

all this pretty well. However I dont think she can defend us in the

case of a lawsuit. So when this is all over I intend on moving foward

with that as well. One message posted mentioned that this individual

thought California was a state that looked at NY as being the greener

side of the fence, so to speak. Dont be fooled...you are so right,

there are " dimwits " everywhere. I know there are some good districts

in NY, unfoutunately my district is not one of them. But I do hear

even from those in the best school districts that they have had some

similar experiences. Its really quite unfoutunate. I am in a middle

class neighborhood. I thought this district was better myself. But I

must be honest, I think this CSE chairperson has it in for us at this

point. It sounds terrible, but i think she has just taken our case

very personally. I dont think of myself as an expert by any means,

but I do feel that I am well educated in the area of ' needs. I

have learned a great deal over the past several years in how to deal

with district and school personel, and I am constantly educating

myself on new options and keeping up to date on the latest studies. I

think this intimidates the district very much. they are simply not

used to dealing with people who are educated on the needs of thier

children. Not to say that ALL parents are not like me. But there are

so many parents that do not put up the fight that we all do. They set

the stage for those of us who will not stand for less than our

children deserve.

I also wanted to touch base a little on the medication issues. One

person here asked if has ever been on medication. Wow...let me

tell you we have tried it all. did best on Risperdol. In the

beginning he was like a different child. The behavior was nearly gone

for several weeks. Then suddenly he began to gain tremendous amounts

of weight. While on the risperdol he gained over 20 pounds in a 4

week time frame. We weight the pro's and con's with the doctor and

decided to keep him on the meds for a while longer. Then the

risperdol stopped working. We ended up increasing the dose until it

was maxed out to the most he could have. It was still uneffective in

treating the behaviors difficulties. We then felt that the weight

gain was not worth having him on this medication so we discussed

other options with the doctor since the meds were not working any

longer for him. They had him on about 5 different meds over a long

period of time. None of them seemed to have a possitive effect on

him, and all of them caused major weight gain. ended up

gaining over 45 pounds total within a years time. He is 6 years old

and is now 86 pounds. He more then doubled his body weight since last

year when they started the medications. We also at one point had

trouble getting to sleep at night. I think it was just a fase

he was going though, but it seemed endless. would sometimes go

an entire night without sleep. His neurologist recomended a drug to

help him sleep at night (clonadine). This drug had an adverse affect

on him. Instead of sleeping was completely wired. He went 3

nights straight without a wink of sleep (as did we). The doctor could

not believe it. He even told us this drug would knock out a horse. I

don't think he would have believed us that he did not sleep for 3

nights had it not been for ' home tutor who was with us at the

visit to his office. She informed him that she was with us through

this ordeal and urged him to try and help us. He told us there was

nothing more he could do. Medication was a huge failure for , I

wish I could say otherwise. Since then we were advised to take

off all meds and start from scratch. He is now sleeping through the

night again, although bedtime routines are not the best. But once

asleep, he is getting through the night. As far as the meds that were

used for behavioral purposes, well they just did not work for him and

the unbelievable amount of weight he gained was just not worth using

a drug that did nothing possitive for him. Im told though that some

kids just don't do well on meds. Im sure I exagerated when I say we

have tried them all, but we sure gave it a good shot.

Thank you all for your responses...I was notified today that the CSE

will be reconvening on Tues the 21st. Hopefully we will resolve the

issues of safety that need to be settled so we can move on other

issues as well. I will definately make sure he gets the 1:1 on his

IEP as well as the use of the helmet. I will let you all know what

happens.

> I have a six year old autistic son. His name is . is

> self abusive. He engages in head-banging, self-biting, and will gag

> himself until the point of vommiting. We have determined through

data

> collection (ABC data) that has multiple reasons for his

> behavior. This makes it very difficult to address. His behavior is

> attention seeking, it is sensory related, and it is also for

reasons

> of frustration because of his lack of communication ( is non-

> verbal). attends a 12 month program and during the past

August

> vacation (a 2 week break from school) ' behaviors were at an

> all time high. We quickly fell into a crisis situation.

began

> to bang his head so severely that he was putting holes right

through

> the walls. He began to seek out sharp corners and extremely hard

> surfaces like walls and concrete to bang his head on. We had no

home

> tutoring at the time because his home tutor had left us with very

> short notice after nearly 2 years of working with our son. We were

> desperate and did not know where to turn. We had discussed the

> possibility that we may need to utilize a helmet for our son with

his

> teacher at school who was working with him over the summer. Before

> the August vacation, his teacher suggested having wear a

> baseball cap instead of a helmet. We thought this was insanely

> rediculous. His head banging was already very intense at that point

> and we could not see a cap blocking him from a harmful injury. The

> teacher at school explained to us that a helmet was considered a

very

> restrictive device and would only be considered as a " last resort. "

> Well, has been banging his head since he was only 2 years

old.

> This was not a new behavior that no one had gotten a chance to

> address. In fact there were several behavioral plans that school

had

> put into place that had failed over the past 4 years. I thought,

what

> would be a " last resort? " Would it be before or after he inflicts a

> major injury upon himself? Well needless to say, during the

vacation

> in August his behavior had gotten so out of controll that we had no

> choice but to contact the School District CSE chairperson and ask

for

> help. The district at this point had just assigned a new

home

> tutor. The day the home tutor began we requested the helmet from

the

> district. The tutor was able to witness the intensity of '

> behavior and agreed that a helmet was definately in order. The

> district offered to purchase the helmet and had it sent to us. We

did

> see an increase in behavior at first once the helmet was utilized.

> However after a short period of time, the behavior began to

decrease

> dramatically. Once school was back in session, we were afraid to

send

> on the bus so I drove him the first few days. Driving in the

> car had even been an issue since would thrash around so

> severely that he would get out of his seatbelt and cause mayham in

> the car along with banging his head on the glass windows. If i was

> alone with him I would have to pull over to prevent an accident. I

> could not imagine putting him on the school bus with all new bus

> staff. The first two days I drove him, I could not even get him

from

> the car to the front doors of the school. He would throw himself

down

> on the concrete and attempt to hurt himself and would have a full

> blown tantrum. In fact the first two days it took 4 adults to get

him

> into the building. It was horrible. By the end of the August

> vacation, I looked like a battered woman. Aside from the beating my

> son was giving to himself, anyone who tried to stop him also got a

> beating. My arms and legs looked like someone battered me. I was

> bruised, scrathed, and bitten. I could not think of anything to do

> but watch them take my son into school and stand there and cry.

this

> was by far the worst I have ever seen him. after all of this we

> decided to reconvene our CSE to discuss what could be done to help.

> His school was refusing to use the helmet which our DISTRICT

supplied

> to us. The district could not make the school comply so we decided

to

> reconvene and talk it over. After four hours of discussion, the

> school refused still. We had our advocate along to the meeting with

> us. The advocate advised school that they would be held accountable

> if anything happened to while not using the helmet. Even his

> doctor sent a letter of recomendations asking the school to utilize

> the helmet and provide with a one on one aide. Still they

> refused. We had to end the meeting after four long hours with the

> understanding that we would reconvene again at the nearest date

> possible. The meeting was so unproductive. The CSE chairperson was

> out of line so many times and could not control herself from

yelling

> and screaming at anyone who did not agree with her. The district

> personel was under her control and would not even speak on '

> behalf even though the social worker and the autistic consultant

from

> the district were in our home and witnessed the behaviors first

hand.

> In fact the autistic consultant did not even attend the CSE

meeting,

> and neither the social worker nor the consultant provided any

written

> reports of thier observation at the CSE meeting. We were constantly

> reminded to seek out respite instead of discussing what educational

> options should be put into place for our son, and when we mentioned

> home services to be increased so that we could put into place a

> community component and work on community outings, we were told by

> the CSE chairperson that she would not support us in this way. That

> just because we were embarressed to go into public with our son

that

> this did not mean she should supply us with a babysitter! Can you

> even imagine?! We insisted by the end of the meeting that the CSE

> make a decision as to what could be done to assure us of our son's

> safety during school while we wait to reconvene. Seeing as they

> refused to implement the helmet. They agreed to supply him with a

one

> on one aide " temporarily " until we could meet again. The next day

> school called me to let me know that even though they told me that

> they never had a student who needed to use a helmet, that was not

> true. In fact they had an individual in the adult resident program

> they run who has needed to use a helmet. They also told me that

they

> contacted thier people(I guess thier lawyers) and discovered that

> because of our Doctors note they must implement the use of the

> helmet. Amazing! But now they wanted me to have the doctor right

> specific guidelines...when to put helmet on...when to take

off...what

> to do if resists the helmet etc... This was getting

rediculous

> to say the least. First of all, they called the doctors letter of

> recomendation a " prescription " over and over again. I repeatedly

> reminded them that this was nothing more than a letter of

> recomendation. The doctor is not afiliated with thier program in

any

> way shape or form. Of course we all know that they wanted to turn

the

> liability issues around onto the doctor, but this just was not

going

> to happen. They knew as well as I did. What were they going to say,

> that could not go to school next? They then informed me that

> they would be following the regulations set forth by OMRDD (office

> for Mental Retardation and Developmental Disibilities) in regard to

> the use of a helmet in school. One problem though...they do not

fall

> within OMRDD regulations, in fact they fall within NYS Educational

> Deptartments regulations! Guess what...NYS ED does not have any

> specific guidlines to follow regarding the use of a helmet in

school.

> Instead they leave it up the the CSE to decide if in fact a helmet

is

> needed and if so how it will be used! I of course was responsible

to

> figure all this out on my own since school blatantly refused to

call

> NYS ED and find out this very useful information! Yet even after

> notifying them of the information I discovered, they still insist

on

> following OMRDD regulations. So I called OMRDD and was informed

that

> they are not allowed to do that. Still, weeks later they continue

to

> follow OMRDD regulations! We are still waiting to recovene the CSE.

> We have written to the CSE to request an imediate review, but no

date

> has been set forth as of yet. Meanwhile, there are so many other

> issues that need to be discussed with the CSE regarding , and

> none can be until this issue of his safety is resolved. I will keep

> you all updated. It will be interesting and definately a learning

> experience for us all to see how this turns out. Let me know what

you

> think!

[Guest guest]

This is what I am afraid is going to happen with the suggested from our Diagnostic Center that have a one-on-one aide to help him cope with his bipolar.

BETTY ANN-61 yo, probably undx'd bipolargrandma and guardian toANDREW - 12 yo-- Bipolar/ADHD, HomeschooledEVAN - 9 yo-- nonverbal autism DAVID 7 yo Bipolar/ADHDand mother to ANDREA -32 yo, their mom -Bipolar/ADHDwife to BOB - 72 yo, a very patient and tired grandpa

----- Original Message -----

From: Legg

the law required a one on one aide for an autistic child

-- if only it was that simple. Some school districts make the parents fight for every little thing that they child needs.

[Guest guest]

---Wow--IMHO--Get a lawyer tomorrow! There is no way you or

should have to wait for a meeting to determine when and how they

will keep him safe--they could do an interim IEP and include the

helmet and 1;1 aide IMMEDIATELY for safety reasons! This is insane--

His real IEP would then include this and then a section on WHY he

has these behaviors and ways to eliminate them--This is THEIR job--

Who collected the data on why vomits, head bangs etc? Why

didn't this person then put in procedural guidelines to address them-

-Like a sensory diet OT?speech/ play therapy/ vestibular/ oral

motor, etc for his mouth issues..and many head bangers do it for a

reason like headaches/allergies has he ever had a cat scan to rule

something out (They will not pay for this but useful for ruling out

other issues)--Man I would be on them so fast--here is a kid with

neurological issues and they are allowing him to hurt his head (HUGE

liability issue ) and not helping you determine what is causing it--

And what type of communication are thet trying with him that he is

so frustrated--maybe they need to reavuluate that as well! Also,

just wondering if is on a special diet, supplemets etc? I

wish I could be your attorney...let us know how it turns out..

In autism , " autismaware "

<autismaware@y...> wrote:

> I have a six year old autistic son. His name is . is

> self abusive. He engages in head-banging, self-biting, and will

gag

> himself until the point of vommiting. We have determined through

data

> collection (ABC data) that has multiple reasons for his

> behavior. This makes it very difficult to address. His behavior is

> attention seeking, it is sensory related, and it is also for

reasons

> of frustration because of his lack of communication ( is non-

> verbal). attends a 12 month program and during the past

August

> vacation (a 2 week break from school) ' behaviors were at an

> all time high. We quickly fell into a crisis situation.

began

> to bang his head so severely that he was putting holes right

through

> the walls. He began to seek out sharp corners and extremely hard

> surfaces like walls and concrete to bang his head on. We had no

home

> tutoring at the time because his home tutor had left us with very

> short notice after nearly 2 years of working with our son. We were

> desperate and did not know where to turn. We had discussed the

> possibility that we may need to utilize a helmet for our son with

his

> teacher at school who was working with him over the summer. Before

> the August vacation, his teacher suggested having wear a

> baseball cap instead of a helmet. We thought this was insanely

> rediculous. His head banging was already very intense at that

point

> and we could not see a cap blocking him from a harmful injury. The

> teacher at school explained to us that a helmet was considered a

very

> restrictive device and would only be considered as a " last

resort. "

> Well, has been banging his head since he was only 2 years

old.

> This was not a new behavior that no one had gotten a chance to

> address. In fact there were several behavioral plans that school

had

> put into place that had failed over the past 4 years. I thought,

what

> would be a " last resort? " Would it be before or after he inflicts

a

> major injury upon himself? Well needless to say, during the

vacation

> in August his behavior had gotten so out of controll that we had

no

> choice but to contact the School District CSE chairperson and ask

for

> help. The district at this point had just assigned a new

home

> tutor. The day the home tutor began we requested the helmet from

the

> district. The tutor was able to witness the intensity of '

> behavior and agreed that a helmet was definately in order. The

> district offered to purchase the helmet and had it sent to us. We

did

> see an increase in behavior at first once the helmet was utilized.

> However after a short period of time, the behavior began to

decrease

> dramatically. Once school was back in session, we were afraid to

send

> on the bus so I drove him the first few days. Driving in

the

> car had even been an issue since would thrash around so

> severely that he would get out of his seatbelt and cause mayham in

> the car along with banging his head on the glass windows. If i was

> alone with him I would have to pull over to prevent an accident. I

> could not imagine putting him on the school bus with all new bus

> staff. The first two days I drove him, I could not even get him

from

> the car to the front doors of the school. He would throw himself

down

> on the concrete and attempt to hurt himself and would have a full

> blown tantrum. In fact the first two days it took 4 adults to get

him

> into the building. It was horrible. By the end of the August

> vacation, I looked like a battered woman. Aside from the beating

my

> son was giving to himself, anyone who tried to stop him also got a

> beating. My arms and legs looked like someone battered me. I was

> bruised, scrathed, and bitten. I could not think of anything to do

> but watch them take my son into school and stand there and cry.

this

> was by far the worst I have ever seen him. after all of this we

> decided to reconvene our CSE to discuss what could be done to

help.

> His school was refusing to use the helmet which our DISTRICT

supplied

> to us. The district could not make the school comply so we decided

to

> reconvene and talk it over. After four hours of discussion, the

> school refused still. We had our advocate along to the meeting

with

> us. The advocate advised school that they would be held

accountable

> if anything happened to while not using the helmet. Even

his

> doctor sent a letter of recomendations asking the school to

utilize

> the helmet and provide with a one on one aide. Still they

> refused. We had to end the meeting after four long hours with the

> understanding that we would reconvene again at the nearest date

> possible. The meeting was so unproductive. The CSE chairperson was

> out of line so many times and could not control herself from

yelling

> and screaming at anyone who did not agree with her. The district

> personel was under her control and would not even speak on '

> behalf even though the social worker and the autistic consultant

from

> the district were in our home and witnessed the behaviors first

hand.

> In fact the autistic consultant did not even attend the CSE

meeting,

> and neither the social worker nor the consultant provided any

written

> reports of thier observation at the CSE meeting. We were

constantly

> reminded to seek out respite instead of discussing what

educational

> options should be put into place for our son, and when we

mentioned

> home services to be increased so that we could put into place a

> community component and work on community outings, we were told by

> the CSE chairperson that she would not support us in this way.

That

> just because we were embarressed to go into public with our son

that

> this did not mean she should supply us with a babysitter! Can you

> even imagine?! We insisted by the end of the meeting that the CSE

> make a decision as to what could be done to assure us of our son's

> safety during school while we wait to reconvene. Seeing as they

> refused to implement the helmet. They agreed to supply him with a

one

> on one aide " temporarily " until we could meet again. The next day

> school called me to let me know that even though they told me that

> they never had a student who needed to use a helmet, that was not

> true. In fact they had an individual in the adult resident program

> they run who has needed to use a helmet. They also told me that

they

> contacted thier people(I guess thier lawyers) and discovered that

> because of our Doctors note they must implement the use of the

> helmet. Amazing! But now they wanted me to have the doctor right

> specific guidelines...when to put helmet on...when to take

off...what

> to do if resists the helmet etc... This was getting

rediculous

> to say the least. First of all, they called the doctors letter of

> recomendation a " prescription " over and over again. I repeatedly

> reminded them that this was nothing more than a letter of

> recomendation. The doctor is not afiliated with thier program in

any

> way shape or form. Of course we all know that they wanted to turn

the

> liability issues around onto the doctor, but this just was not

going

> to happen. They knew as well as I did. What were they going to

say,

> that could not go to school next? They then informed me

that

> they would be following the regulations set forth by OMRDD (office

> for Mental Retardation and Developmental Disibilities) in regard

to

> the use of a helmet in school. One problem though...they do not

fall

> within OMRDD regulations, in fact they fall within NYS Educational

> Deptartments regulations! Guess what...NYS ED does not have any

> specific guidlines to follow regarding the use of a helmet in

school.

> Instead they leave it up the the CSE to decide if in fact a helmet

is

> needed and if so how it will be used! I of course was responsible

to

> figure all this out on my own since school blatantly refused to

call

> NYS ED and find out this very useful information! Yet even after

> notifying them of the information I discovered, they still insist

on

> following OMRDD regulations. So I called OMRDD and was informed

that

> they are not allowed to do that. Still, weeks later they continue

to

> follow OMRDD regulations! We are still waiting to recovene the

CSE.

> We have written to the CSE to request an imediate review, but no

date

> has been set forth as of yet. Meanwhile, there are so many other

> issues that need to be discussed with the CSE regarding ,

and

> none can be until this issue of his safety is resolved. I will

keep

> you all updated. It will be interesting and definately a learning

> experience for us all to see how this turns out. Let me know what

you

> think!

[Guest guest]

>But no, they must prove that

you know nothing but doing the opposite of what you ask, causing

to

regress and then pretending that it is all your fault because they

are doing

as you wanted. NOT!<

I believe that is exactly what they are doing. They are trying

to " prove " that your way is wrong and their way is right. We have

caught our school in many lies, and underhanded tactics. It seems to

never end. My grandson has been on the GF/CF diet since he entered

school at 3 (he is now 7) A parent in the past witnessed them giving

him non GFCF foods numerous times when she was in the classroom That

teacher called her a liar and insisted that they " stick " to the

diet. We could tell at various times that he had gotten something he

can't have by behavior and mood. He has a different teacher now and

she too has insisted they stick to the diet. We have suspected other

wise. Recently she made a comment that he can have M and M's. I

said no he can't have it. She said the new law prohibits giving

children candy now, but since M and M's have milk in them they are

allowed. I told her that is exactly why he shouldn't have them.

DUH! Today in a phone conversation she said she gave him a coffee

flavored piece of candy which it turned out he didn't want. I

informed her that the candy most likely has milk in it. I now am

convinced that they continue to give him anything they want and then

lie in the ARD's that they never do that. They have a copy of the

do's and don't of the diet on file, and I have told them repeatedly

what isn't allowed but.....It is maddening. I posted earlier about

my grandson starting Abilify and I welcome any discussion or info on

it.