Re: does anyone else live like this or is it just me?

[Guest guest]

One of the most common reactions that I get from friends when I share stories

with them about my son is the " I don't know how you do it " . I have learned to

just keep a sense of humor about it all. You cannot control everything and it

you try to you will just drive yourself insane. So you have to look at the

other side of the craziness. And as I also tell people, what else am I suppose

to do?He is my son and I love him. He is briliant and makes me laugh with his

great sense of humor and when I am sad he will give me his whole heart to make

it better. So I do what I have to do.

Vickie

>

> When my son outgrows the Abilify dose (or it stops working or whatever the

hell causes it.... full moon, planets lined up, whatever), he begins to wrap

himself in plastic and try to vacuum seal himself all day and all night with the

vacuum and duct tape and a mattress bag or any plastic sheeting he can find.

Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let

him keep doing it. This and covering himself in

shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory

thing, not a masturbation thing. And, he becomes obsessed with doing science

experiments day and night instead of sleeping. He recently outgrew Abilify 25

mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2

am in the kitchen, draining into our septic tank. Last night it was trying to

melt plastic bags in boiling water to make pot holders out of trash bags with an

obsessive/perseverative vengence. I think I found myself screaming " But I don't

WANT plastic pot holders!!??? " at some point, just before I gave extra Abilify

after he then proclaimed that he was going to kill himself and started to make a

fertilizer explosive in a coffee grinder. It is a pattern of stability for 12

months, weight gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes obvious.

>

> I'm tired. It has been night after night of this. He already has some

tardive dyskinesia, but can't live without the antipsychotics. Well, he can

live, it would just be covered in plastic with a straw in his mouth, until the

carbon dioxide levels build up and he dies......

>

> One of my friends thinks we need a reality show. Too funny! You gotta laugh

sometimes at the sheer insanity of it all.....

>

[Guest guest]

Vickie - you described that beautifully. I feel the exact same way about my son. Thank you!Sent via BlackBerry by AT&TFrom: "baneline1" <baneline1@...>Date: Fri, 12 Mar 2010 17:53:49 -0000< >Subject: ( ) Re: does anyone else live like this or is it just me? One of the most common reactions that I get from friends when I share stories with them about my son is the " I don't know how you do it " . I have learned to just keep a sense of humor about it all. You cannot control everything and it you try to you will just drive yourself insane. So you have to look at the other side of the craziness. And as I also tell people, what else am I suppose to do?He is my son and I love him. He is briliant and makes me laugh with his great sense of humor and when I am sad he will give me his whole heart to make it better. So I do what I have to do.Vickie>> When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/perseverative vengence. I think I found myself screaming " But I don't WANT plastic pot holders!!??? " at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious. > > I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies...... > > One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....>

[Guest guest]

Debra you are keeping a sense of humor. That is great! About the medication I

wonder if there is not a mood stabizer that may

have less side effects. I know a few mom's that had kids on

Abilify and then since it turned out to be long term use switched to better

tolerated medications. One child ended up on lithium and the

other is older and on lamitral. I hate to think about changing medications for

my daughter. It is not easy finding one that works.

Pam

>

> When my son outgrows the Abilify dose (or it stops working or whatever the

hell causes it.... full moon, planets lined up, whatever), he begins to wrap

himself in plastic and try to vacuum seal himself all day and all night with the

vacuum and duct tape and a mattress bag or any plastic sheeting he can find.

Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let

him keep doing it. This and covering himself in

shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory

thing, not a masturbation thing. And, he becomes obsessed with doing science

experiments day and night instead of sleeping. He recently outgrew Abilify 25

mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2

am in the kitchen, draining into our septic tank. Last night it was trying to

melt plastic bags in boiling water to make pot holders out of trash bags with an

obsessive/perseverative vengence. I think I found myself screaming " But I don't

WANT plastic pot holders!!??? " at some point, just before I gave extra Abilify

after he then proclaimed that he was going to kill himself and started to make a

fertilizer explosive in a coffee grinder. It is a pattern of stability for 12

months, weight gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes obvious.

>

> I'm tired. It has been night after night of this. He already has some

tardive dyskinesia, but can't live without the antipsychotics. Well, he can

live, it would just be covered in plastic with a straw in his mouth, until the

carbon dioxide levels build up and he dies......

>

> One of my friends thinks we need a reality show. Too funny! You gotta laugh

sometimes at the sheer insanity of it all.....

>

[Guest guest]

We tried Trileptal - rash, Neurontin - nothing. Depakote - urinating every 20 minutes and it didn't get better over time. Afraid to do Lamictal given that he is very allergic to Trileptal and Amoxicillin. Lamictal would probably help a lot. Afraid also to do Tegretol because of rash. No good data or anecdotal reports of Topamax, Keppra, Lyrica, Vimpat, or any other common anticonvulsant helping bipolar-ish mood stuff. I am patiently waiting for a new drug to be invented. Really, a new antipsychotic with no weight gain, no tardive dyskinesia. That is what I want.

Have a relative who has mental retardation but is similar in flavor to my son and he has had the same responses to meds as my son. He was on lithium and it didn't do anything, so we haven't tried lithium.

Any other mood stabilizers I don't know about??? Of course tried the SSRI's - Zoloft and Paxil. Tried fish oil, flax seed oil too. No change with those.

I think I need a very long vacation alone, with no plastic sheeting or vacuums.....

( ) Re: does anyone else live like this or is it just me?

Debra you are keeping a sense of humor. That is great! About the medication I wonder if there is not a mood stabizer that may have less side effects. I know a few mom's that had kids on Abilify and then since it turned out to be long term use switched to better tolerated medications. One child ended up on lithium and the other is older and on lamitral. I hate to think about changing medications for my daughter. It is not easy finding one that works.Pam >> When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/perseverative vengence. I think I found myself screaming "But I don't WANT plastic pot holders!!???" at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious. > > I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies...... > > One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....>

[Guest guest]

Very well said, Vickie! I feel the same way about my 13 year old son. :)Sent from my iPhoneOn Mar 12, 2010, at 11:53 AM, "baneline1" <baneline1@...> wrote:

One of the most common reactions that I get from friends when I share stories with them about my son is the "I don't know how you do it". I have learned to just keep a sense of humor about it all. You cannot control everything and it you try to you will just drive yourself insane. So you have to look at the other side of the craziness. And as I also tell people, what else am I suppose to do?He is my son and I love him. He is briliant and makes me laugh with his great sense of humor and when I am sad he will give me his whole heart to make it better. So I do what I have to do.

Vickie

>

> When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/perseverative vengence. I think I found myself screaming "But I don't WANT plastic pot holders!!???" at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious.

>

> I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies......

>

> One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....

>

[Guest guest]

What about abilify just a thought

On Fri Mar 12th, 2010 2:16 PM EST Debra Balke wrote:

>We tried Trileptal - rash, Neurontin - nothing. Depakote - urinating every 20

minutes and it didn't get better over time. Afraid to do Lamictal given that he

is very allergic to Trileptal and Amoxicillin. Lamictal would probably help a

lot. Afraid also to do Tegretol because of rash. No good data or anecdotal

reports of Topamax, Keppra, Lyrica, Vimpat, or any other common anticonvulsant

helping bipolar-ish mood stuff. I am patiently waiting for a new drug to be

invented. Really, a new antipsychotic with no weight gain, no tardive

dyskinesia. That is what I want.

>

>Have a relative who has mental retardation but is similar in flavor to my son

and he has had the same responses to meds as my son. He was on lithium and it

didn't do anything, so we haven't tried lithium.

>Any other mood stabilizers I don't know about??? Of course tried the SSRI's -

Zoloft and Paxil. Tried fish oil, flax seed oil too. No change with those.

>

>I think I need a very long vacation alone, with no plastic sheeting or

vacuums.....

> ( ) Re: does anyone else live like this or is it just

me?

>

>

>

> Debra you are keeping a sense of humor. That is great! About the medication I

wonder if there is not a mood stabizer that may

> have less side effects. I know a few mom's that had kids on

> Abilify and then since it turned out to be long term use switched to better

tolerated medications. One child ended up on lithium and the

> other is older and on lamitral. I hate to think about changing medications

for my daughter. It is not easy finding one that works.

>

> Pam

>

>

> >

> > When my son outgrows the Abilify dose (or it stops working or whatever the

hell causes it.... full moon, planets lined up, whatever), he begins to wrap

himself in plastic and try to vacuum seal himself all day and all night with the

vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now

stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him

keep doing it. This and covering himself in

shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory

thing, not a masturbation thing. And, he becomes obsessed with doing science

experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg

per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in

the kitchen, draining into our septic tank. Last night it was trying to melt

plastic bags in boiling water to make pot holders out of trash bags with an

obsessive/perseverative vengence. I think I found myself

screaming " But I don't WANT plastic pot holders!!??? " at some point, just

before I gave extra Abilify after he then proclaimed that he was going to kill

himself and started to make a fertilizer explosive in a coffee grinder. It is a

pattern of stability for 12 months, weight gain, then the vacuum sealing

insidiously starts up, the plastic sealants go missing, then all hell breaks

loose when it becomes obvious.

> >

> > I'm tired. It has been night after night of this. He already has some

tardive dyskinesia, but can't live without the antipsychotics. Well, he can

live, it would just be covered in plastic with a straw in his mouth, until the

carbon dioxide levels build up and he dies......

> >

> > One of my friends thinks we need a reality show. Too funny! You gotta laugh

sometimes at the sheer insanity of it all.....

> >

>

>

>

>

[Guest guest]

Oh Debra......

I know you told us to stop laughing...but.....hee hee.

I gotta say that I love your outlook. It's amazing. And.....I love your son. Hee hee.

It really is simple. Just treat others kindly and with respect.

Robin

From: Debra Balke <dlbalke@...>Subject: ( ) does anyone else live like this or is it just me? Date: Friday, March 12, 2010, 11:14 AM

When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner /mud/flour/ paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders

out of trash bags with an obsessive/persevera tive vengence. I think I found myself screaming "But I don't WANT plastic pot holders!!??? " at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious.

I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies......

One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....

[Guest guest]

On 30 mg of Abilify currently, I think it was two messages behind and sparked this conversation of what OTHER meds besides Abilify. I agree. Abilify is great, just that pesky tardive dyskinesia that he happens to have.

( ) Re: does anyone else live like this or is it just me?>>> > Debra you are keeping a sense of humor. That is great! About the medication I wonder if there is not a mood stabizer that may > have less side effects. I know a few mom's that had kids on > Abilify and then since it turned out to be long term use switched to better tolerated medications. One child ended up on lithium and the > other is older and on lamitral. I hate to think about changing medications for my daughter. It is not easy finding one that works.>> Pam >> > >> > When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/perseverative vengence. I think I found myselfscreaming "But I don't WANT plastic pot holders!!???" at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious. > > > > I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies...... > > > > One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....> >>>>>

[Guest guest]

These poor kids they suffer so much.

I too need a break. I feel I am too impatient with my daughters

obbessing over everything. My nerves are on edge

for sure.

Pam

> >

> > When my son outgrows the Abilify dose (or it stops working or whatever the

hell causes it.... full moon, planets lined up, whatever), he begins to wrap

himself in plastic and try to vacuum seal himself all day and all night with the

vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now

stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him

keep doing it. This and covering himself in

shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory

thing, not a masturbation thing. And, he becomes obsessed with doing science

experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg

per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in

the kitchen, draining into our septic tank. Last night it was trying to melt

plastic bags in boiling water to make pot holders out of trash bags with an

obsessive/perseverative vengence. I think I found myself screaming " But I don't

WANT plastic pot holders!!??? " at some point, just before I gave extra Abilify

after he then proclaimed that he was going to kill himself and started to make a

fertilizer explosive in a coffee grinder. It is a pattern of stability for 12

months, weight gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes obvious.

> >

> > I'm tired. It has been night after night of this. He already has some

tardive dyskinesia, but can't live without the antipsychotics. Well, he can

live, it would just be covered in plastic with a straw in his mouth, until the

carbon dioxide levels build up and he dies......

> >

> > One of my friends thinks we need a reality show. Too funny! You gotta

laugh sometimes at the sheer insanity of it all.....

> >

>

[Guest guest]

Dear Ms Burford:

I stoped Ablify when I heard there was a law suite, that was blaiming the Drug maker for giving Tardive Dyskinesia to the users of Abilify.

Thornton

( ) Re: does anyone else live like this or is it just me?>>> > Debra you are keeping a sense of humor. That is great! About the medication I wonder if there is not a mood stabizer that may > have less side effects. I know a few mom's that had kids on > Abilify and then since it turned out to be long term use switched to better tolerated medications. One child ended up on lithium and the > other is older and on lamitral. I hate to think about changing medications for my daughter. It is not easy finding one that works.>> Pam >> > >> > When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/perseverative vengence. I think I found myselfscreaming "But I don't WANT plastic pot holders!!???" at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious. > > > > I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies...... > > > > One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....> >>>>>

[Guest guest]

Oh sorry i wasnt aware of the lawsuit my son was on low dose for alittle over a

yr for severe mood swings that caused alot of aggression the abilify really

helped him during that time he needed a mood stabilizer sherry

On Sun Mar 14th, 2010 10:50 AM EDT Thornton wrote:

>Dear Ms Burford:

> I stoped Ablify when I heard there was a law suite, that was blaiming the

Drug maker for giving Tardive Dyskinesia to the users of Abilify.

>

> Thornton

> ( ) Re: does anyone else live like this or is it

just me?

> >

> >

> >

> > Debra you are keeping a sense of humor. That is great! About the

medication I wonder if there is not a mood stabizer that may

> > have less side effects. I know a few mom's that had kids on

> > Abilify and then since it turned out to be long term use switched to

better tolerated medications. One child ended up on lithium and the

> > other is older and on lamitral. I hate to think about changing

medications for my daughter. It is not easy finding one that works.

> >

> > Pam

> >

> >

> > >

> > > When my son outgrows the Abilify dose (or it stops working or whatever

the hell causes it.... full moon, planets lined up, whatever), he begins to wrap

himself in plastic and try to vacuum seal himself all day and all night with the

vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now

stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him

keep doing it. This and covering himself in

shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory

thing, not a masturbation thing. And, he becomes obsessed with doing science

experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg

per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in

the kitchen, draining into our septic tank. Last night it was trying to melt

plastic bags in boiling water to make pot holders out of trash bags with an

obsessive/perseverative vengence. I think I found

myself

> screaming " But I don't WANT plastic pot holders!!??? " at some point, just

before I gave extra Abilify after he then proclaimed that he was going to kill

himself and started to make a fertilizer explosive in a coffee grinder. It is a

pattern of stability for 12 months, weight gain, then the vacuum sealing

insidiously starts up, the plastic sealants go missing, then all hell breaks

loose when it becomes obvious.

> > >

> > > I'm tired. It has been night after night of this. He already has some

tardive dyskinesia, but can't live without the antipsychotics. Well, he can

live, it would just be covered in plastic with a straw in his mouth, until the

carbon dioxide levels build up and he dies......

> > >

> > > One of my friends thinks we need a reality show. Too funny! You gotta

laugh sometimes at the sheer insanity of it all.....

> > >

> >

> >

> >

> >

>

>

>

>

>

[Guest guest]

I love it when people say " I don't know how you do it. " I often smile

slightly and say, " Who says I do it at all? " lol.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: does anyone else live like this or is

it just me?

One of the most common reactions that I get from friends when I share

stories with them about my son is the " I don't know how you do it " . I

have learned to just keep a sense of humor about it all. You cannot

control everything and it you try to you will just drive yourself

insane. So you have to look at the other side of the craziness. And

as I also tell people, what else am I suppose to do?He is my son and I

love him. He is briliant and makes me laugh with his great sense of

humor and when I am sad he will give me his whole heart to make it

better. So I do what I have to do.

Vickie

>

> When my son outgrows the Abilify dose (or it stops working or

whatever the hell causes it.... full moon, planets lined up, whatever),

he begins to wrap himself in plastic and try to vacuum seal himself all

day and all night with the vacuum and duct tape and a mattress bag or

any plastic sheeting he can find. Now stop laughing! Imagine straw in

mouth, covered in plastic, screaming to let him keep doing it. This

and covering himself in shampoo/conditioner/mud/flour/paste/caulking

compound, etc. It is a sensory thing, not a masturbation thing. And,

he becomes obsessed with doing science experiments day and night

instead of sleeping. He recently outgrew Abilify 25 mg per day and we

have had a week of hell. Linseed oil/sulfur experiment at 2 am in the

kitchen, draining into our septic tank. Last night it was trying to

melt plastic bags in boiling water to make pot holders out of trash

bags with an obsessive/perseverative vengence. I think I found mysel f

screaming " But I don't WANT plastic pot holders!!??? " at some point,

just before I gave extra Abilify after he then proclaimed that he was

going to kill himself and started to make a fertilizer explosive in a

coffee grinder. It is a pattern of stability for 12 months, weight

gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes

obvious.

>

> I'm tired. It has been night after night of this. He already has

some tardive dyskinesia, but can't live without the antipsychotics.

Well, he can live, it would just be covered in plastic with a straw in

his mouth, until the carbon dioxide levels build up and he dies......

>

> One of my friends thinks we need a reality show. Too funny! You

gotta laugh sometimes at the sheer insanity of it all.....

>

[Guest guest]

I think I found myself screaming "But I don't WANT plastic pot holders!!??? "

My son is a bit hung up on solar systems at the mo, not really paying attention to him my son was busy punching everything he could with a hole punch, then he disappeared to his room, a few minutes later he was shouting on me to come and see what he had done....he opened the door and very proudly presented his carpet galaxy, yep tiny circles of paper scattered all over the floor. He was so pleased at his creation that I couldn't be angry, but no I didn't want a carpets galaxy, thankfully easily hoovered up and not as dangerous as boiling carrier bags.

Lx

From: Pamela <susanonderko@...>Subject: ( ) Re: does anyone else live like this or is it just me? Date: Saturday, 13 March, 2010, 22:07

These poor kids they suffer so much. I too need a break. I feel I am too impatient with my daughtersobbessing over everything. My nerves are on edge for sure.Pam > >> > When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets

lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner /mud/flour/ paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/persevera tive vengence. I think I found myself screaming "But I don't WANT plastic pot holders!!??? " at some point, just before I gave extra Abilify after he

then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious. > > > > I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies...... > > > > One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....> >>

[Guest guest]

Debra, I read this and had the song, " I want a new drug " by Huey

and the News going through my head, lol. Wow, that probably just dated

me a bit. lol.

We just started celexa after a bunch of trials of different meds - from

abilify to prozac. Celexa is working so far. But you know, nothing

good can last. Isn't that the rule? lol.

Roxanna

Whenever I feel blue, I start breathing again.

Re: ( ) Re: does anyone else live like this or

is it just me?

We tried Trileptal - rash, Neurontin - nothing.  Depakote - urinating

every 20 minutes and it didn't get better over time.  Afraid to do

Lamictal given that he is very allergic to Trileptal and Amoxicillin. 

Lamictal would probably help a lot.  Afraid also to do Tegretol because

of rash.  No good data or anecdotal reports of Topamax, Keppra, Lyrica,

Vimpat, or any other common anticonvulsant helping bipolar-ish mood

stuff.  I am patiently waiting for a new drug to be invented.  Really,

a new antipsychotic with no weight gain, no tardive dyskinesia.  That

is what I want.

 

Have a relative who has mental retardation but is similar in flavor to

my son and he has had the same responses to meds as my son.  He was on

lithium and it didn't do anything, so we haven't tried lithium.  

Any other mood stabilizers I don't know about???  Of course tried the

SSRI's - Zoloft and Paxil.  Tried fish oil, flax seed oil too.  No

change with those.

 

I think I need a very long vacation alone, with no plastic sheeting or

vacuums.....

( ) Re: does anyone else live like this or is

it just me?

 

Debra you are keeping a sense of humor. That is great! About the

medication I wonder if there is not a mood stabizer that may

have less side effects. I know a few mom's that had kids on

Abilify and then since it turned out to be long term use switched to

better tolerated medications. One child ended up on lithium and the

other is older and on lamitral. I hate to think about changing

medications for my daughter. It is not easy finding one that works.

Pam

>

> When my son outgrows the Abilify dose (or it stops working or

whatever the hell causes it.... full moon, planets lined up,

whatever), he begins to wrap himself in plastic and try to vacuum

seal himself all day and all night with the vacuum and duct tape and

a mattress bag or any plastic sheeting he can find. Now stop

laughing! Imagine straw in mouth, covered in plastic, screaming to let

him keep doing it. This and covering himself in

shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a

sensory thing, not a masturbation thing. And, he becomes obsessed with

doing science experiments day and night instead of sleeping. He

recently outgrew Abilify 25 mg per day and we have had a week of

hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining

into our septic tank. Last night it was trying to melt plastic bags

in boiling water to make pot holders out of trash bags with an

obsessive/perseverative vengence. I think I found myself screaming

" But I don't WANT plastic pot holders!!??? " at some point, just

before I gave extra Abilify after he then proclaimed that he was

going to kill himself and started to make a fertilizer explosive in a

coffee grinder. It is a pattern of stability for 12 months, weight

gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes

obvious.

>

> I'm tired. It has been night after night of this. He already has

some tardive dyskinesia, but can't live without the antipsychotics.

Well, he can live, it would just be covered in plastic with a straw

in his mouth, until the carbon dioxide levels build up and he

dies......

>

> One of my friends thinks we need a reality show. Too funny! You

gotta laugh sometimes at the sheer insanity of it all.....

>

[Guest guest]

LOL From: MadIdeas@...Date: Mon, 15 Mar 2010 10:22:39 -0400Subject: Re: ( ) Re: does anyone else live like this or is it just me?

I love it when people say "I don't know how you do it." I often smile

slightly and say, "Who says I do it at all?" lol.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: does anyone else live like this or is

it just me?

One of the most common reactions that I get from friends when I share

stories with them about my son is the "I don't know how you do it". I

have learned to just keep a sense of humor about it all. You cannot

control everything and it you try to you will just drive yourself

insane. So you have to look at the other side of the craziness. And

as I also tell people, what else am I suppose to do?He is my son and I

love him. He is briliant and makes me laugh with his great sense of

humor and when I am sad he will give me his whole heart to make it

better. So I do what I have to do.

Vickie

>

> When my son outgrows the Abilify dose (or it stops working or

whatever the hell causes it.... full moon, planets lined up, whatever),

he begins to wrap himself in plastic and try to vacuum seal himself all

day and all night with the vacuum and duct tape and a mattress bag or

any plastic sheeting he can find. Now stop laughing! Imagine straw in

mouth, covered in plastic, screaming to let him keep doing it. This

and covering himself in shampoo/conditioner/mud/flour/paste/caulking

compound, etc. It is a sensory thing, not a masturbation thing. And,

he becomes obsessed with doing science experiments day and night

instead of sleeping. He recently outgrew Abilify 25 mg per day and we

have had a week of hell. Linseed oil/sulfur experiment at 2 am in the

kitchen, draining into our septic tank. Last night it was trying to

melt plastic bags in boiling water to make pot holders out of trash

bags with an obsessive/perseverative vengence. I think I found mysel f

screaming "But I don't WANT plastic pot holders!!???" at some point,

just before I gave extra Abilify after he then proclaimed that he was

going to kill himself and started to make a fertilizer explosive in a

coffee grinder. It is a pattern of stability for 12 months, weight

gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes

obvious.

>

> I'm tired. It has been night after night of this. He already has

some tardive dyskinesia, but can't live without the antipsychotics.

Well, he can live, it would just be covered in plastic with a straw in

his mouth, until the carbon dioxide levels build up and he dies......

>

> One of my friends thinks we need a reality show. Too funny! You

gotta laugh sometimes at the sheer insanity of it all.....

>

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn More.

[Guest guest]

I get this a lot too especially since I homeschool her. I shrug and say I have to! Shes my daughter, I love her and want her to succeed. You do what you have to do right?? :-D On Mar 15, 2010, at 7:22 AM, Roxanna wrote:

I love it when people say "I don't know how you do it." I often smile

slightly and say, "Who says I do it at all?" lol.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: does anyone else live like this or is

it just me?

One of the most common reactions that I get from friends when I share

stories with them about my son is the "I don't know how you do it". I

have learned to just keep a sense of humor about it all. You cannot

control everything and it you try to you will just drive yourself

insane. So you have to look at the other side of the craziness. And

as I also tell people, what else am I suppose to do?He is my son and I

love him. He is briliant and makes me laugh with his great sense of

humor and when I am sad he will give me his whole heart to make it

better. So I do what I have to do.

Vickie

>

> When my son outgrows the Abilify dose (or it stops working or

whatever the hell causes it.... full moon, planets lined up, whatever),

he begins to wrap himself in plastic and try to vacuum seal himself all

day and all night with the vacuum and duct tape and a mattress bag or

any plastic sheeting he can find. Now stop laughing! Imagine straw in

mouth, covered in plastic, screaming to let him keep doing it. This

and covering himself in shampoo/conditioner/mud/flour/paste/caulking

compound, etc. It is a sensory thing, not a masturbation thing. And,

he becomes obsessed with doing science experiments day and night

instead of sleeping. He recently outgrew Abilify 25 mg per day and we

have had a week of hell. Linseed oil/sulfur experiment at 2 am in the

kitchen, draining into our septic tank. Last night it was trying to

melt plastic bags in boiling water to make pot holders out of trash

bags with an obsessive/perseverative vengence. I think I found mysel f

screaming "But I don't WANT plastic pot holders!!???" at some point,

just before I gave extra Abilify after he then proclaimed that he was

going to kill himself and started to make a fertilizer explosive in a

coffee grinder. It is a pattern of stability for 12 months, weight

gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes

obvious.

>

> I'm tired. It has been night after night of this. He already has

some tardive dyskinesia, but can't live without the antipsychotics.

Well, he can live, it would just be covered in plastic with a straw in

his mouth, until the carbon dioxide levels build up and he dies......

>

> One of my friends thinks we need a reality show. Too funny! You

gotta laugh sometimes at the sheer insanity of it all.....

>

“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs

[Guest guest]

Pam, I'm right there with ya!! Lx, Thats so funny, my dd does stuff like that maybe I should learn to not get so mad!! On Mar 15, 2010, at 7:23 AM, Lorraine son wrote:

I think I found myself screaming "But I don't WANT plastic pot holders!!??? "

My son is a bit hung up on solar systems at the mo, not really paying attention to him my son was busy punching everything he could with a hole punch, then he disappeared to his room, a few minutes later he was shouting on me to come and see what he had done....he opened the door and very proudly presented his carpet galaxy, yep tiny circles of paper scattered all over the floor. He was so pleased at his creation that I couldn't be angry, but no I didn't want a carpets galaxy, thankfully easily hoovered up and not as dangerous as boiling carrier bags.

Lx

From: Pamela <susanonderko >Subject: ( ) Re: does anyone else live like this or is it just me? Date: Saturday, 13 March, 2010, 22:07

These poor kids they suffer so much. I too need a break. I feel I am too impatient with my daughtersobbessing over everything. My nerves are on edge for sure.Pam

[Guest guest]

My initial thought when I read this was of Temple Grandin and her need to feel

squeezed. I'm not sure if you are famaliar with her books, or saw the recent HBO

movie about her? She made a 'squeeze machine' to fulfill that need.

Anyway, maybe when he gets like that you can have some acceptable alternatives

lined up instead.

TJ

>

> When my son outgrows the Abilify dose (or it stops working or whatever the

hell causes it.... full moon, planets lined up, whatever), he begins to wrap

himself in plastic and try to vacuum seal himself all day and all night with the

vacuum and duct tape and a mattress bag or any plastic sheeting he can find.

Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let

him keep doing it. This and covering himself in

shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory

thing, not a masturbation thing. And, he becomes obsessed with doing science

experiments day and night instead of sleeping. He recently outgrew Abilify 25

mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2

am in the kitchen, draining into our septic tank. Last night it was trying to

melt plastic bags in boiling water to make pot holders out of trash bags with an

obsessive/perseverative vengence. I think I found myself screaming " But I don't

WANT plastic pot holders!!??? " at some point, just before I gave extra Abilify

after he then proclaimed that he was going to kill himself and started to make a

fertilizer explosive in a coffee grinder. It is a pattern of stability for 12

months, weight gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes obvious.

>

> I'm tired. It has been night after night of this. He already has some

tardive dyskinesia, but can't live without the antipsychotics. Well, he can

live, it would just be covered in plastic with a straw in his mouth, until the

carbon dioxide levels build up and he dies......

>

> One of my friends thinks we need a reality show. Too funny! You gotta laugh

sometimes at the sheer insanity of it all.....

>

[Guest guest]

Was thinking the SAME thing! I am looking at ordering weighted blankets,

actually, for my son....His sensory issues have always been a concern, and I

think meeting those needs might mitigate a few other issues. I can hope!

Good luck,

JoAnn in CO

P.S. She is going to be speaking near me on 4/5 -- and I plan to go see her! Saw

her a few years ago an autism conf. in Denver -- really a great event.

>

> My initial thought when I read this was of Temple Grandin and her need to feel

squeezed. I'm not sure if you are famaliar with her books,

[Guest guest]

I want to brag...... I actually got to go to dinner with Temple Grandin!!!! It was about two years ago, just four of us. It was truly an amazing experience.

Someone recommended lycra body bags..... I'm going to purchase one of those this week, as well as the lycra that looks like it straps you into bed.

( ) Re: does anyone else live like this or is it just me?

My initial thought when I read this was of Temple Grandin and her need to feel squeezed. I'm not sure if you are famaliar with her books, or saw the recent HBO movie about her? She made a 'squeeze machine' to fulfill that need.Anyway, maybe when he gets like that you can have some acceptable alternatives lined up instead.TJ>> When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/perseverative vengence. I think I found myself screaming "But I don't WANT plastic pot holders!!???" at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious. > > I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies...... > > One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....>

[Guest guest]

Wow what an amazing experience. I can only imagine what it

would. Did she offer any advice or was it strictly social?

melody

[Guest guest]

I'm super Jealous! I watched the HBO movie, It was really good On Mar 15, 2010, at 4:08 PM, Debra Balke wrote:

I want to brag...... I actually got to go to dinner with Temple Grandin!!!! It was about two years ago, just four of us. It was truly an amazing experience.

Someone recommended lycra body bags..... I'm going to purchase one of those this week, as well as the lycra that looks like it straps you into bed.

( ) Re: does anyone else live like this or is it just me?

My initial thought when I read this was of Temple Grandin and her need to feel squeezed. I'm not sure if you are famaliar with her books, or saw the recent HBO movie about her? She made a 'squeeze machine' to fulfill that need.Anyway, maybe when he gets like that you can have some acceptable alternatives lined up instead.TJ>> When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/perseverative vengence. I think I found myself screaming "But I don't WANT plastic pot holders!!???" at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious. > > I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies...... > > One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....>

“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs

[Guest guest]

Yes, she offered advice. She said these kids should go from elementary school into apprenticeship in their area of interest and bypass middle school and highschool if at all possible. We are trying to do this as much as possible. Social skills surrounding his area of interest, community college courses in his interest and a part time 3 hour per week job in his area of interest. Of course, I get to be his aide for all of this, but it sure beats an IEP meeting/threat assessment meeting/due process hearing any day of the week!!!

Re: ( ) Re: does anyone else live like this or is it just me?

Wow what an amazing experience. I can only imagine what it would. Did she offer any advice or was it strictly social?

melody

[Guest guest]

I immediately thought of Temple Gradin's " hug " /squeeze machine, too, and so did

my husband.

I'm not sure if this would work or not, b/c it sounds like he needs to feel like

he is wrapped tightly, but my husband recommended the Snuggie blanket (the

blankets with the sleeves... Perhaps, with a little sewing and/or velcro to make

it tighter, he might feel the compression that he needs

(https://www.getsnuggie.com/flare/next).

The autism specialist at our son's school noticed that he often wears a jacket,

even when it's warm, and recommended we look into compression underwear. I

found a site for people with Sensory Processing Disorders (SPD) that has some

information on compression underwear

(http://www.sensory-processing-disorder.com/comfortable-underwear.html).

Hope this helps!

Gladys

> >

> > When my son outgrows the Abilify dose (or it stops working or whatever the

hell causes it.... full moon, planets lined up, whatever), he begins to wrap

himself in plastic and try to vacuum seal himself all day and all night with the

vacuum and duct tape and a mattress bag or any plastic sheeting he can find.

Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let

him keep doing it. This and covering himself in

shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory

thing, not a masturbation thing. And, he becomes obsessed with doing science

experiments day and night instead of sleeping. He recently outgrew Abilify 25

mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2

am in the kitchen, draining into our septic tank. Last night it was trying to

melt plastic bags in boiling water to make pot holders out of trash bags with an

obsessive/perseverative vengence. I think I found myself screaming " But I don't

WANT plastic pot holders!!??? " at some point, just before I gave extra Abilify

after he then proclaimed that he was going to kill himself and started to make a

fertilizer explosive in a coffee grinder. It is a pattern of stability for 12

months, weight gain, then the vacuum sealing insidiously starts up, the plastic

sealants go missing, then all hell breaks loose when it becomes obvious.

> >

> > I'm tired. It has been night after night of this. He already has some

tardive dyskinesia, but can't live without the antipsychotics. Well, he can

live, it would just be covered in plastic with a straw in his mouth, until the

carbon dioxide levels build up and he dies......

> >

> > One of my friends thinks we need a reality show. Too funny! You gotta

laugh sometimes at the sheer insanity of it all.....

> >

>

[Guest guest]

Yes, thank you thank you to those of you who recommended this! That is exactly what I need to do. We did look up how to build her "squeeze machine" but it looked complicated. We do have a snuggie but he really needs a weighted blanked, body sock, etc. I am going to order something online.

Compression underwear??!!! What will they think of next!

My daughter, also autistic, used to wear 10 one piece bathing suits all at once. She was 2, 3 years old. Then, she would have to go to the bathroom and we would panic! LOL

( ) Re: does anyone else live like this or is it just me?

I immediately thought of Temple Gradin's "hug"/squeeze machine, too, and so did my husband.I'm not sure if this would work or not, b/c it sounds like he needs to feel like he is wrapped tightly, but my husband recommended the Snuggie blanket (the blankets with the sleeves... Perhaps, with a little sewing and/or velcro to make it tighter, he might feel the compression that he needs (https://www.getsnuggie.com/flare/next).The autism specialist at our son's school noticed that he often wears a jacket, even when it's warm, and recommended we look into compression underwear. I found a site for people with Sensory Processing Disorders (SPD) that has some information on compression underwear (http://www.sensory-processing-disorder.com/comfortable-underwear.html).Hope this helps!Gladys> >> > When my son outgrows the Abilify dose (or it stops working or whatever the hell causes it.... full moon, planets lined up, whatever), he begins to wrap himself in plastic and try to vacuum seal himself all day and all night with the vacuum and duct tape and a mattress bag or any plastic sheeting he can find. Now stop laughing! Imagine straw in mouth, covered in plastic, screaming to let him keep doing it. This and covering himself in shampoo/conditioner/mud/flour/paste/caulking compound, etc. It is a sensory thing, not a masturbation thing. And, he becomes obsessed with doing science experiments day and night instead of sleeping. He recently outgrew Abilify 25 mg per day and we have had a week of hell. Linseed oil/sulfur experiment at 2 am in the kitchen, draining into our septic tank. Last night it was trying to melt plastic bags in boiling water to make pot holders out of trash bags with an obsessive/perseverative vengence. I think I found myself screaming "But I don't WANT plastic pot holders!!???" at some point, just before I gave extra Abilify after he then proclaimed that he was going to kill himself and started to make a fertilizer explosive in a coffee grinder. It is a pattern of stability for 12 months, weight gain, then the vacuum sealing insidiously starts up, the plastic sealants go missing, then all hell breaks loose when it becomes obvious. > > > > I'm tired. It has been night after night of this. He already has some tardive dyskinesia, but can't live without the antipsychotics. Well, he can live, it would just be covered in plastic with a straw in his mouth, until the carbon dioxide levels build up and he dies...... > > > > One of my friends thinks we need a reality show. Too funny! You gotta laugh sometimes at the sheer insanity of it all.....> >>