Re: Help-restraint/alternatives to descalate aspbergers

[Guest guest]

I need to find quick and easily by monday am-

something to support the idea that my son, is not

going to descalate in a stark white cubby area with

absolutely nothing to use or do to descalate- there is

a door to an inclosed court yard off cubby area and a

real wall that separates area from classroom- Jay is

10, at home he wraps up in a blanket. They have flat

out refused several requests from me to add a

cardboard box for him to crawl in. He said there was

a pillow but they took it away because another child

threw it. He is a little snail who crawls into his

shell when his emotions overload, and they wont

accomodate this in this day treatment setting- this a

new program -a little over a year old in an area where

people are only aware of rainman autistic. He has

bruises and abrasions and has been restrained three

times this week. I think I found the key to the diet

thing- he is reacting to corn, we meticulously removed

the corn- right down to the pepcidAC- and his bladder

retention has returned! So its looking better, never

the less Our IEP is Friday and I need something to

support what I know as a mother -

__________________________________________________

[Guest guest]

What about some type of clothing? A cape perhaps? Or in the abilitations

catelogs they have these stretchy bags that cover the kids. Or how about

one of those reading blankets...we had them in college to study with...it's

a big blanket with a zipper up the front and snaps at the ankles and wrists.

If you could figure out clothing and tell your sweetie these are his safe

clothes, the school might go for that. Just thoughts. Keep brainstorming

and praying for a solution...you'll find what you need.

Re: Help-restraint/alternatives to descalate aspbergers

>I need to find quick and easily by monday am-

>something to support the idea that my son, is not

>going to descalate in a stark white cubby area with

>absolutely nothing to use or do to descalate- there is

>a door to an inclosed court yard off cubby area and a

>real wall that separates area from classroom- Jay is

>10, at home he wraps up in a blanket. They have flat

>out refused several requests from me to add a

>cardboard box for him to crawl in. He said there was

>a pillow but they took it away because another child

>threw it. He is a little snail who crawls into his

>shell when his emotions overload, and they wont

>accomodate this in this day treatment setting- this a

>new program -a little over a year old in an area where

>people are only aware of rainman autistic. He has

>bruises and abrasions and has been restrained three

>times this week. I think I found the key to the diet

>thing- he is reacting to corn, we meticulously removed

>the corn- right down to the pepcidAC- and his bladder

>retention has returned! So its looking better, never

>the less Our IEP is Friday and I need something to

>support what I know as a mother -

>

>__________________________________________________

>

[Guest guest]

Does he have an OT at school? Self calming techniques are absolutely

necessary for these children, and if he has an OT I would insist that this

was a self calming technique and request of the OT to fight for it for you.

If not, then you will have to fight it on your own. We had this battle last

year. I went in and insisted that she have a safe place she could go when

she felt overwhelmed, and that when she returned she be required to finish

the work she walked out on (the school liked this part). I let them chose

where the safe place would be, but insisted that it not change once they

decided, as for consistency. If they will still not go for it then request

that they consult with an autistic resource teacher in the school system-

they have to do this if you request it. Someone trained in the area of

autism will most definitely support you. Pull together all the information

you can about self calming techniques before you go, and present it to them.

If you overwhelm them with info and then threaten to take it to the school

board if they don't give you what you want, they will usually cave in. I

would also use the children's disability act, showing that they must modify

his environment to meet his needs! I had to tell 's teachers and the

other members of the IEP board last year straight up that I was not there to

be their buddy, or to even be friendly- that I was there to advocate for my

daughter in whatever way necessary, and that I was not under any

circumstances going to stop at a no to a reasonable request on my daughter's

part. I know they think I am a bitch, but we got everything we asked for,

and as a result they have watched her recover and now know that most of the

time mom knows best. We don't have to push for much anymore, we ask and the

answer is almost always yes right off the bat now. Good luck, I know how

difficult it can be. But go in with the attitude that you will not take no

for an answer, no matter what!

Re: Help-restraint/alternatives to descalate aspbergers

> I need to find quick and easily by monday am-

> something to support the idea that my son, is not

> going to descalate in a stark white cubby area with

> absolutely nothing to use or do to descalate- there is

> a door to an inclosed court yard off cubby area and a

> real wall that separates area from classroom- Jay is

> 10, at home he wraps up in a blanket. They have flat

> out refused several requests from me to add a

> cardboard box for him to crawl in. He said there was

> a pillow but they took it away because another child

> threw it. He is a little snail who crawls into his

> shell when his emotions overload, and they wont

> accomodate this in this day treatment setting- this a

> new program -a little over a year old in an area where

> people are only aware of rainman autistic. He has

> bruises and abrasions and has been restrained three

> times this week. I think I found the key to the diet

> thing- he is reacting to corn, we meticulously removed

> the corn- right down to the pepcidAC- and his bladder

> retention has returned! So its looking better, never

> the less Our IEP is Friday and I need something to

> support what I know as a mother -

>

> __________________________________________________

>

[Guest guest]

In a message dated 3/4/01 7:29:16 PM Pacific Standard Time,

memehegan@... writes:

> this school district is so small-

> we are a little city and we are just soo small- I

> dont even know of another aspbergers child in the

> school district so why would they have an autisitic

> resouce teacher? Each grade has about 200 kids for

> the whole city.

, my heart goes out to you at this difficult time. You've obviously been

through so much and still have such a difficult fight.

It seem to me that the IDEA is a federal law and EVERY child deserves an

appropriate education, even in a small community. To me it seems that your

son's civil liberties are being taken. Have you contacted an attorney who

specializes in Special ed. law? If there's a law school or a university

nearby that has a teaching program, they might be able to suggest someone in

your state.

I have been in a situation where just surviving the next day was all I could

manage and the thought of dealing with the legal system was

overwhelming...but maybe they would be more responsive if they had to

communicate through a lawyer.

Whatever you do, know that the love for your son that came through in this

letter is incredible and I am truly inspired by your persistence and

willingness to do what ever you must for your son.

I hope that even though we don't have the answers, at least the support will

add strength to your fight.

Cherri

[Guest guest]

Hi -

Sorry to be so slow answering - just got back into reading posts.

Try www.tonyattwood.com for info. Wonderful website on aspergers.

He's an internationally recognized expert on aspergers, and anything

he posts should be given credibility. He is strong on reducing

stress and accepting providing the individual with what he or she

needs in order to feel comfortable and safe. He wrote a wonderful

letter for me to give to my boy's school, stating that I knew best

how to accommodate Ian's stress levels, and that should be respected

whether or not anyone else felt it was appropriate.

He has enormous respect for the struggles faced by people with

aspergers. I think you will find his website very informative and

comforting. His book - Aspergers Syndrome - while not discussisng

dietary, etc, interventions, is very useful and full of commonsense

recommendations. I loan a copy to everyone who works with my son.

Good luck with the school. I'm sad to read that things aren't going

well at the moment.

[Guest guest]

Does your school district have a behavior specialist on staff? This is

someone who goes in and does a Functional Behavior Analysis -- looks at

what kind of problem behaviors are occurring, what triggers the

behaviors, what is accomplished by the behaviors, what can be done to

remove those triggers or to teach the child more acceptable alternatives

to accomplish the same thing, and how the grownups around can most

constructively react to those behaviors.

With your son's record of frequent physical restraint and the staff's

obvious obtuseness about how to handle him, its seems a sympathetic

behavior specialist would be helpful. Put your request in writing and

make sure everyone from the superintendent on down gets a copy. Good

luck.

in FL

[Guest guest]

Ok, talk me through this, they say the safe place is

this stark white 20ft long by maybe 8ft area with a

real wall, and open doorway to classroom and high

ceilings and glass door at one of the skinny ends to

enclosed courtyard. the long back wall is lined with

empty white cubbies.. they have held firm about

refusing to allow anything in this area for their

saftey , I have begged for legos, the box or paper,

even paper they withold as a barganing chip- which

empowers them, not him I think they think a box

would be regressive and not support his development-

but isnt it possible that he may never out grow his

need, I want to print out temple gradins article- and

a balanket they think he would whip at them- he

wouldnt, his blanket is sacred he only attackes them

because his sensory issues are raw in this state and

he needs the dark solitude- it only takes maybe 10-20

minutes tops when the diet is working and sometimes

even 3-5 minutes to clam down with the blanket or

under a table at home. In his darkest rage he never

ever attacked me with his blanket.

I used to write and write in his journal daily but

they said that was too much to read and would prefer

to call me if there was a crisis. I am still

advocating to recieve written accounts of the

restraints for his records and for the doctor- they

havent wanted to do that- I understand the time crunch

in getting them out in a timely manner, the phone call

is great, but I would still like the written account.

This hasnt been a big issue, until the corn

regressed him the last two weeks- by the way by friday

night as we were shopping he had to make three

bathroom runs Yea!!! The bladder retention is

returning! I have been using the rice-base enzyme

with the meds and that seems to help some with the

milk in the meds. this school district is so small-

we are a little city and we are just soo small- I

dont even know of another aspbergers child in the

school district so why would they have an autisitic

resouce teacher? Each grade has about 200 kids for

the whole city. It is critical to iron this out now

with the school while his regression is fresh in their

minds, where could I find a list of self-calming

techniques, He does have OT and I will start with

her,

this school district- threatened to challenge our

initial diagnosis last year from the new hospital

psychiatrist- before him we had to drive 2 1/2 hours

every month to see a psychiatrist that didnt want to

insitutionalize him as hopeless ODD- this diet has

been incredible and I was so scared this week, I spoke

with the head of our hospital's pediatrics- asking her

about DAN protocal-she told me it was bogus as was the

MMR issues, and mercury poisoning and said I could

draw conclussions about a diet just because my son

coincidently showed improvement, she assured me there

are no cures, just desperate parents wishing- I didnt

hold a lot of stock in her advice but I was still

scared because I haven't seen posts from parents whos

kids have been on this diet for 5,6 10 years and I am

scared that this incredible year was just a brief

respite - he's such an incredible child and I couldnt

bare to loose him to his inner world again- he easily

could have gone inpatient last sunday. I just couldnt

bare it, I started to hold his mouth open against his

will to take the meds cause he was so far gone, he

spit them out, at me, dumped the water punched wholes

in the wall, kicked me but then suddenly he regestered

that my nail must have just scratched his gum-no blood

or even mark but he snapped out of it, sat up took

meds, rolled up in his blanket and with in 15 minutes

he let me touch him, massaging his head,

rythmically-then he melt and cuddled. I have only had

a year of cuddling- I know he's growing sooo fast that

in no time he'll be pulling away and it will be

developmentally appropriate- but this was a different

kinda of not wanting touch before he calmed down, he

said he was stupid and its as if he doesnt deem

himself worthy of love and comfort. He was in so much

emotional pain and he would accept nothing!! He used

to be an island all the time before the diet.

As soon as he came out of it I reasured him that I

never ever meant to scratch his gum, that I was sorry

and that he knows how important them meds are and it

is the one of the steadfast rules in out house that

you have to take your meds and keep your self and

others safe.

This is such a horrid horrid disease, I have had to

committe this tiny little boy to psychiatric hospitals

3-4 hours from home three times, each time it is so

painful, the last time I was scared for my older

childs saftey, I told them from the get go I wouldnt

accept him back home, then the risperedal started to

kick it, and the hospital said they would give the

school what they needed to begin looking for placement

-but it would take 6 months if we were lucky. They

knew him well by now and the psycologist confirmed

what our psychiatrist had diagnosised, adding the

autistic like symptoms, I had hoped this would be a

shield to protect from intrusive touch and

expectations that set him off, I never dreamed with in

two months I would discover this diet and watch my

" rock island " blossom into a beutiful flower garden.

After last weekend- it made me realize how fragile

this precious child is, we know so little and we dont

know that this is forever yet, we all hope hope hope.

I cried at last years CSE because they wouldnt agree

to no restraint and they wouldnt agree to face up

restraint, and they wouldnt agree to tutoring- at home

for the first time he'd been restraint free for two

months and they wouldn't agree to other health

impaired insissting despite the diagnosis and

unrealistic expectations, his rage indicated that he

was emotionally disturbed.

... KNowing how close we came to loosing him again,

and how fragile his ego is, how am I going to stay

calm at this meeting and not cry, it feels so much

like death when he detaches- my sons life is in the

hands of people who cant even imagine what this is

like-this week was the first time they saw even a hint

of what the old Jay was like. I am scared that they

think I am a nut case over-reacting and I know I am

not. My only sanity is that the cousellor and the

teacher, seem generally very intune with him,

genuinely like him and are properly awed by his

insightful observations- but simply unfamiliar with

aspbergers- this is a behavior mod day treatment

program, but they should be able to lend themselves to

adapt to his phsycial needs, if they would just be

able to percieve them as physical needs instead of

behavioral - well I am sorry this is so long, I will

sign off for now, thank you for listening

__________________________________________________

[Guest guest]

Hi ,

I don't have any solution for you, but I felt so bad for you as I read

your post because your son reminds me of my daughter. She

has gotten a lot better on the diet, she's been on it a year,and

she's eight. I think you are absolutely right about what your son

needs to calm down and I can back that up with the opinions of

three or four therapists my daughter has worked with. If your

child can self -calm with a blanket or a box, that is just great -

they should encourage it. So hang in there, people have different

opinions on what works, but you definitely know what's best for

your kid.

Kathy