Re: Going Crazy

[Guest guest]

hello,

i'm a new member of this group - my 19 and 21 year old son just got

diagnosed with AS. we have been dealing with ADHD for years. It was crazy in

our

house before the boys were placed on ritalin at 9 and 11. Your 6 year old may

have another issue that medication could possibly help.

linda

[Guest guest]

Hi!

I'm so sorry. It sounds like such a hard situation,

and you sound like you really hurt for him.

Max is almost 6, and he gets angry a lot, too. When I

go to visit friends with children with more severe

autism, I am so thankful, though. I see their kids,

and it's painful to me, because I know it must be for

them: their kids can't talk, are always in their own

world (whereas Max only is sometimes), and are totally

unresponsive - not ever even making eye contact. And

all of this after a boatload of medicines, to help

them to be THAT " on " . I can't imagine.

But, they generally don't have the anger issues that

Max does (sometimes they do, but not as much). I

decided that I'd rather have the anger along with a

kid who makes some eye contact and can talk and

interact some.

I get down about Max a lot. My husband and I also

think, " what can we do for him? He's in such pain " ,

(when he gets angry, and there's nothing you can do to

get him out of it). But then I think of those other

kids - I can't imagine. And I can't imagine Max

thinking things and totally unable to express it.

Anyway, hope this helps. Hang in there.

Blessings,

Adrienne

--- Cristina Pittman <arapittman@...> wrote:

> We have had such a difficult week with my son who

> has AS. He is completely out of control. Yelling,

> throwing things, telling us he doesn't like us,

> telling us this is the house from down there (to him

> it means hell), and many more chaotic things. My

> husband and I stood at the kitchen with him sending

> us to our room. He kept yelling he is the boss and

> we do not let him do anything he wants. We were

> speechless!!! We can't take it anymore. We can't

> even have people over our house. This afternoon my

> family came to eat dinner with us they travelled 30

> miles to get here and Nicolas told them all to leave

> yelling on the top of his lungs. Of course my

> family left about 5 minutes after this happened. He

> slams the door from his room in front of our faces

> and my family's response is give him a good

> spanking. I know they are trying to help, but it's

> not working. I feel like screaming and crying. Why

> is this happening to our children? My son is only

> six years old and

> yesterday he said he is killing himself with the

> big ant that is pinching his body. I feel so bad

> for my baby. I watch him how painful his world is

> and I feel helpless. He is our only child and we

> began seeing an infertility doctor to see if we can

> have another baby, but I do not know if we can

> handle it. We do not know if AS is genetic will we

> have another baby with AS. Although we would love

> the baby I do not want them to suffrer like Nicolas.

> He is so lonely! Well, I am going to try to regroup

> myself for another tomorrow. What insanity :-( We

> are hurting so much right now I do not know how we

> will get to his teenage years.

> Thanks for hearing me out. If feels good to cry

> and write.

> God Bless

> Cristina

>

>

> ---------------------------------

> Messenger with Voice. PC-to-Phone calls for

> ridiculously low rates.

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Please hang in there ! God never gives us anything that we cannot

handle, even though it feels that way sometimes. You and your husband have to

lean on each other (which you obviously are) b/c no one understands your family

dynamic the way you do. And frankly, it doesn't matter what anyone else thinks

either! Sometimes there are days and weeks that you just have to try to stick

it out and come up with a new strategy next time for dealing with the

meltdowns...I know that doesn't help much, but hang in there!

(mom to and Faith)

Cristina Pittman <arapittman@...> wrote:

We have had such a difficult week with my son who has AS. He is completely

out of control. Yelling, throwing things, telling us he doesn't like us,

telling us this is the house from down there (to him it means hell), and many

more chaotic things. My husband and I stood at the kitchen with him sending us

to our room. He kept yelling he is the boss and we do not let him do anything

he wants. We were speechless!!! We can't take it anymore. We can't even have

people over our house. This afternoon my family came to eat dinner with us they

travelled 30 miles to get here and Nicolas told them all to leave yelling on the

top of his lungs. Of course my family left about 5 minutes after this happened.

He slams the door from his room in front of our faces and my family's response

is give him a good spanking. I know they are trying to help, but it's not

working. I feel like screaming and crying. Why is this happening to our

children? My son is only six years old and

yesterday he said he is killing himself with the big ant that is pinching his

body. I feel so bad for my baby. I watch him how painful his world is and I

feel helpless. He is our only child and we began seeing an infertility doctor to

see if we can have another baby, but I do not know if we can handle it. We do

not know if AS is genetic will we have another baby with AS. Although we would

love the baby I do not want them to suffrer like Nicolas. He is so lonely!

Well, I am going to try to regroup myself for another tomorrow. What insanity

:-( We are hurting so much right now I do not know how we will get to his

teenage years.

Thanks for hearing me out. If feels good to cry and write.

God Bless

Cristina

---------------------------------

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

We have an older AS son and has another son who doesn't have AS symptoms yet.

But it certainlly complicates things a lot. Before he was driving us crazy

but we as adults could deal with it. Now, he drives his little brother crazy

with his energy, his negative tantrums and his poor social skills. We in

turn have to deal with the orginal problem plus the results with the sibling.

It is much more difficult. Car rides are impossible and sometimes we have to

send our youngest to his room to protect him from his brother's " energy " .

Time to ourselves in non-exsistant as we feel we can't leave the two of them

unsupervised. We love our youngest to death but I don't know if we would

make the same choice if we had all the information...

Cristina Pittman arapittman@... wrote: We have had such a difficult week

with my son who has AS. He is completely out of control. Yelling, throwing

things, telling us he doesn't like us, telling us this is the house from down

there (to him it means hell), and many more chaotic things. My husband and I

stood at the kitchen with him sending us to our room. He kept yelling he is the

boss and we do not let him do anything he wants. We were speechless!!! We

can't take it anymore. We can't even have people over our house. This

afternoon my family came to eat dinner with us they travelled 30 miles to get

here and Nicolas told them all to leave yelling on the top of his lungs. Of

course my family left about 5 minutes after this happened. He slams the door

from his room in front of our faces and my family's response is give him a good

spanking. I know they are trying to help, but it's not working. I feel like

screaming and crying. Why is this happening to our

children? My son is only six years old and

yesterday he said he is killing himself with the big ant that is pinching his

body. I feel so bad for my baby. I watch him how painful his world is and I

feel helpless. He is our only child and we began seeing an infertility doctor to

see if we can have another baby, but I do not know if we can handle it. We do

not know if AS is genetic will we have another baby with AS. Although we would

love the baby I do not want them to suffrer like Nicolas. He is so lonely!

Well, I am going to try to regroup myself for another tomorrow. What insanity

:-( We are hurting so much right now I do not know how we will get to his

teenage years.

Thanks for hearing me out. If feels good to cry and write.

God Bless

Cristina

---------------------------------

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

My friend and I (she has a daughter on the spectrum) were talking about our

kids and emotions. She stated that her daughter's emotion for everything is

angry... Pam

[Guest guest]

Subject: ( ) Going Crazy

We have had such a difficult week with my son who has AS. He is completely

out of control. Yelling, throwing things, telling us he doesn't like us,

telling us this is the house from down there (to him it means hell), and

many more chaotic things. My husband and I stood at the kitchen with him

sending us to our room. He kept yelling he is the boss and we do not let

him do anything he wants. We were speechless!!! We can't take it anymore.

We can't even have people over our house. This afternoon my family came to

eat dinner with us they travelled 30 miles to get here and Nicolas told them

all to leave yelling on the top of his lungs. Of course my family left

about 5 minutes after this happened. He slams the door from his room in

front of our faces and my family's response is give him a good spanking. I

know they are trying to help, but it's not working. I feel like screaming

and crying. Why is this happening to our children? My son is only six

years old and

yesterday he said he is killing himself with the big ant that is pinching

his body. I feel so bad for my baby. I watch him how painful his world is

and I feel helpless. He is our only child and we began seeing an infertility

doctor to see if we can have another baby, but I do not know if we can

handle it. We do not know if AS is genetic will we have another baby with

AS. Although we would love the baby I do not want them to suffrer like

Nicolas. He is so lonely! Well, I am going to try to regroup myself for

another tomorrow. What insanity :-( We are hurting so much right now I do

not know how we will get to his teenage years.

Thanks for hearing me out. If feels good to cry and write.

God Bless

Cristina

Sounds a lot like my own 9 yo (HFA)! He often would " fire " us when he got

mad at us. And of course, he was either running away or killing himself,

whichever came first. Most of the time, this was a way for him to say, " I

am really angry! " He doesn't have a lot of words to use when he is angry

and his emotions are always on high speed. So then he reacts to everything

as a huge overwhelming problem, even if it's a small thing we can easily

fix.

One thing we did so far was see the doc for meds. This has helped to slow

down his " tirades. "

Another thing I am doing is looking into books about emotion so we can work

on it over the summer together. One book looks interesting to me so far -

" My Book Full of Feelings: How to Control and React to the Size of Your

Emotions " We also got a book called, " When My Autism Gets Too Big! A

Relaxation Book for Children with Autism Spectrum Disorders " and there are

others as well. Just go to Amazon and look them up to see if you can find

some that you think are relevant for your ds.

As for when he gets out of hand, he goes to his room. If he is really

struggling, I will sit and tickle his back and say calm things to him and

remind him that I love him no matter what. But this can't happen when he is

screaming and yelling. Sometimes we have to let him yell for a bit before

he is ready to stop. And we discuss other ways to handle situations as well

as have him in a social skill group for these things also.

I don't think spanking would really help or you would have probably been

helped already. But I think you need to set limits, even if it's not

something he will accept at first. Tell him, " Grandma is coming for dinner.

If this is going to be too hard for you, you can eat before they come and

spend time in your room reading books while we visit. If you want to join

us, you will have to use your calm voice and tell us when something bothers

you instead of screaming. " Try to give a choice for situations that you

feel are going to be difficult for him.

I would get him used to ways to calm himself down by going to his room,

yelling into his pillow if need be, but to lay down and take deep breaths

until the anger passes and he can talk about what the problem is. Sometimes

they just can't verbalize the problem! But keep pushing him into a habit of

calming down and trying to talk about what is wrong and ways to let people

know without screaming. He could also draw his feelings if he is good at

that sort of thing. Or draw the problem. It's not a one time issue - it's

more like a process. Reward him for good behavior anytime you can find it

and you can also find social stories to use for situations that are common

for him to react badly in.

It usually helps here to figure out what is causing the problem and then

provide solutions that would work instead of yelling. And I also let him

know that some problems do not have a solution but he can talk to me about

being frustrated and I will usually understand because it happens to me too!

I try to help him label his feelings.

I know it's very hard! I hope some ideas here can help.

Roxanna

[Guest guest]

It usually helps here to figure out what is causing the problem and then

provide solutions that would work instead of yelling. And I also let him

know that some problems do not have a solution but he can talk to me about

being frustrated and I will usually understand because it happens to me too!

I try to help him label his feelings.

I know it's very hard! I hope some ideas here can help.

Roxanna

PS: I forgot to add that labeling our own emotions in the moment can

sometimes help. So I will talk aloud to myself if he's around and say, " I

can't make this fit! I am so frustrated! I think it's time for a break! "

Roxanna

[Guest guest]

Hi Girls -

I have wrote in and responded a few times - I am three months post explant and literally feel like I am no better than I was prior to removal. I think that I had a brief period mentally that it was one less thing to worry about, but I awake everyday feeling as if I have the flu and I am so exhausted I cannot function - the effects this is having on my life is effecting me so deeply emotionally - with my inability to keep up with everyday demands.

Does anyone know of anyone in Michigan that deals with post explant recovery protocol - what can I do to feel even the least bit better. I am very discouraged so sorry and I just wish that there was a light to be had in this dreadful tunnel.

Thanks.

[Guest guest]

Hi ,

I didn't feel any better at 3 months post explant, but at 6 months I

did, and I 9 months I felt even better. Actually right now I'm

experiencing some symptoms again, and I'm sure it's because it's

winter time and there's minimal sunlight and it's cold.

Sis

>

> Hi Girls -

>

> I have wrote in and responded a few times - I am three months

post explant

> and literally feel like I am no better than I was prior to

removal. I think

> that I had a brief period mentally that it was one less thing to

worry about,

> but I awake everyday feeling as if I have the flu and I am so

exhausted I

> cannot function - the effects this is having on my life is

effecting me so

> deeply emotionally - with my inability to keep up with everyday

demands.

>

> Does anyone know of anyone in Michigan that deals with post

explant recovery

> protocol - what can I do to feel even the least bit better. I am

very

> discouraged so sorry and I just wish that there was a light to be

had in this

> dreadful tunnel.

>

> Thanks.

>

>

>

[Guest guest]

I'm so sorry.

I think if you can give us some info has to supplements, diets, probiotics,

yeast protocol, enzymes. Something may be causing pain, intolerance. Going to

a simple, clean diet, starting over on supplements...removing wheat and dairy.

Lots of ideas, just need to know what you are doing now.

Tammy

Fels-Naptha

becca.gater@...

Cc: autismbiomed , autism_centralNJ ,

, " Goodman " <asdnutrition@...>,

" Ronda Wagner " <rondawagner@...>, " Ken & Waguespack "

<kwagues@...>, " stephanie ringeisen " <stargazersteph@...>,

" cpac-autism " <CPAC-autism >

Date: Friday, July 10, 2009, 5:26 PM

I was wondering if anyone knew anything about Fels-Naptha. My mom and I are

considering making our own laundry detergent but are concerned as

Fels-Naptha is known to be an irritant.Thanks

Becca

Super Mom to the Minis

and Kayla, 5 years old

22 months old

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~

April is Autism Awareness Month

But EVERY DAY is Autism Awareness Day

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~

[Guest guest]

Here are the supplements and diet. Please help with supplement modifications or

behavioral ideas to get her to want to please versus wanting to piss us off. See

previous email below.

Let me say first off I am a bad mom. I am inconsistent with meds .Meds are given

morning with breakfast and evening after dinner- except sometimes I only give

them once a day.

Food is mostly GFCF  soy free,70% organic .very little processed foods but eat

fast foods meat /fries/salads .Not a real fruit eater,likes greens,meats,loves

GFCF breads cookies, sorbet, popsicles and some candy ( like a Brachs piece

every other day). Not a picky eater. Hates ,hates the VSL and Healthy Trac with

water or apple sauce -fights. Does not swallow pills yet so have to mix in apple

sauce or in fish oil which she likes.

Supplements

VSL double strength  900 billion bacteria 1/2 packet once a day

healthy trac prebiotic once a day .

levothyroxine ( prescription thyroid).05 mg once a day

 Enfamil fer in sol (iron) 1.5ml

Iodoral (potassium iodide) 1/2 tablet twice a day

 natrol ester c 500 mg once a day

 elliots folic acid 800 mcg 1 tablet twice a day

  twin lab cod liver oil  1 tsp twice a day

 kirkmans nu thera with 50 mg p5p

Thorne trace minerals ( has zinc15 mg. selenium,magnesium,chromium molybenum

borun vandium)

1 capsule twice a day

 natural balance creatine 3000 mg

kirkmans buffered magnesium 1/8 tsp twice a day

 kirkmans calcium with vitamin d 1/8 tsp twice a day

coconut oil 1 tsp every other day or when I remember

methalated vit b shots 1 syringe .o5 ml every other day

maelatonin occasional

  Ideas?? She is probably yeasty unsure what to give. Bloated big belly

constipated followed by some days diahrea (sp?)

 carnitine 500  mg o r mcg twice a day (do not have right now)

From: Tammy Kuhn <tkuhn1@...>

Subject: Re: going crazy

Date: Friday, July 10, 2009, 8:56 PM

I'm so sorry.

I think if you can give us some info has to supplements, diets, probiotics,

yeast protocol, enzymes. Something may be causing pain, intolerance. Going to

a simple, clean diet, starting over on supplements. ..removing wheat and dairy.

Lots of ideas, just need to know what you are doing now.

Tammy

Fels-Naptha

becca.gater@ gmail.com

Cc: autismbiomed, autism_centralNJ,

, " Goodman " <asdnutrition@ aol.com>,

" Ronda Wagner " <rondawagner>, " Ken & Waguespack "

<kwaguesoptonline (DOT) net>, " stephanie ringeisen " <stargazersteph@ hotmail.com>,

" cpac-autism " <CPAC-autism>

Date: Friday, July 10, 2009, 5:26 PM

I was wondering if anyone knew anything about Fels-Naptha. My mom and I are

considering making our own laundry detergent but are concerned as

Fels-Naptha is known to be an irritant.Thanks

Becca

Super Mom to the Minis

and Kayla, 5 years old

22 months old

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~

April is Autism Awareness Month

But EVERY DAY is Autism Awareness Day

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~

[Guest guest]

My daughter has Sensory Integration Disorder, so I'm reading this group for the

overlap with Autism (there is apparently quite a lot of SI overlap) and see what

I can glean from your experiences.

The problems you're having sound like a lot of what I was dealing with.  I don't

know what your OT has been working on, but we've seen a lot of success from

Audio Therapy (see vitalsounds.com) combined with her regular therapy.  If

you're not getting much help from your OT then you may want to look at changing

therapists.  We've started timing her music time to coincide with the daily

periods of disruptive outbursts (I've always seen them as a cry for help, but I

haven't known what to do until our OT started giving us some helpful tools). 

Another thing that's helped has been getting the weighted vest, or handing her

heavy objects to help with transitions.  It's amazing how carrying a cantelope

can calm her down!

I hope you can find some help.  I don't know much about enzymes or dietary

benefits so am really enthralled by the experiences people share in this forum. 

I'm not sure that it's the right thing for my daughter since she only seems to

have problems if she's eaten too much fruit.  But I do know that the OT has

helped dramatically.  We also started her in Montessori recently and they're

using a lot of the OT recommendations, so now I feel like we're getting therapy

every day.

Sincerely,

8a.

going crazy

Posted by: " Evangeline "

eaofthehills@...

 

eaofthehills

Fri Jul 10, 2009 6:39 pm (PDT)

My 5 year old is driving me crazy. She has autism. She has fairly good

language,some echolahia(sp? ). She is very hyper,some stimmy behavior, and

spends her free time trying to piss me off.She gets a real trill out of being

bad.She dumps things eggs ,shampoo you name it.Poor independent play skills play

skills but will not sit and play with me or listen to a story..Climbs on

everything. Very ADHD most of the time. She is very fast and destructive. Gets

30 hours of aba,3 hours of playgroup, biweekly OT, and weekly speech. We live on

acreage so the yard is about the only productive place other than therapy. The

therapists seem unwilling or unable to help me. I have three other kids

including a 4 year . She loves to get a reaction and much of the behavior is

dangerous so can not be ignored.Any ideas? Something to mellow her out or some

behavior technique? She is at every 3 minites doing something unsafe,dangerous,

destuctive. Worst time of day 4-7.

IDEas

anyone?

[Guest guest]

Is that true that VSL double strength is different formula than regular VSL 3?

Another words, taking VSL dl 1/2 would not be same as VSL 1? Does anybody know?

________________________________

From: Evangeline <eaofthehills@...>

Sent: Saturday, July 11, 2009 1:21:13 PM

Subject: Re: going crazy

Here are the supplements and diet. Please help with supplement modifications or

behavioral ideas to get her to want to please versus wanting to piss us off. See

previous email below.

Let me say first off I am a bad mom. I am inconsistent with meds .Meds are given

morning with breakfast and evening after dinner- except sometimes I only give

them once a day.

Food is mostly GFCF  soy free,70% organic .very little processed foods but eat

fast foods meat /fries/salads .Not a real fruit eater,likes greens,meats, loves

GFCF breads cookies, sorbet, popsicles and some candy ( like a Brachs piece

every other day). Not a picky eater. Hates ,hates the VSL and Healthy Trac with

water or apple sauce -fights. Does not swallow pills yet so have to mix in apple

sauce or in fish oil which she likes.

Supplements

VSL double strength  900 billion bacteria 1/2 packet once a day

healthy trac prebiotic once a day .

levothyroxine ( prescription thyroid).05 mg once a day

 Enfamil fer in sol (iron) 1.5ml

Iodoral (potassium iodide) 1/2 tablet twice a day

 natrol ester c 500 mg once a day

 elliots folic acid 800 mcg 1 tablet twice a day

  twin lab cod liver oil  1 tsp twice a day

 kirkmans nu thera with 50 mg p5p

Thorne trace minerals ( has zinc15 mg. selenium,magnesium, chromium molybenum

borun vandium)

1 capsule twice a day

 natural balance creatine 3000 mg

kirkmans buffered magnesium 1/8 tsp twice a day

 kirkmans calcium with vitamin d 1/8 tsp twice a day

coconut oil 1 tsp every other day or when I remember

methalated vit b shots 1 syringe .o5 ml every other day

maelatonin occasional

  Ideas?? She is probably yeasty unsure what to give. Bloated big belly

constipated followed by some days diahrea (sp?)

 carnitine 500  mg o r mcg twice a day (do not have right now)

From: Tammy Kuhn <tkuhn1charter (DOT) net>

Subject: Re: going crazy

Date: Friday, July 10, 2009, 8:56 PM

I'm so sorry.

I think if you can give us some info has to supplements, diets, probiotics,

yeast protocol, enzymes. Something may be causing pain, intolerance. Going to a

simple, clean diet, starting over on supplements. ..removing wheat and dairy.

Lots of ideas, just need to know what you are doing now.

Tammy

Fels-Naptha

becca.gater@ gmail.com

Cc: autismbiomed, autism_centralNJ,

, " Goodman " <asdnutrition@ aol.com>,

" Ronda Wagner " <rondawagner>, " Ken & Waguespack "

<kwaguesoptonline (DOT) net>, " stephanie ringeisen " <stargazersteph@ hotmail.com> ,

" cpac-autism " <CPAC-autism>

Date: Friday, July 10, 2009, 5:26 PM

I was wondering if anyone knew anything about Fels-Naptha. My mom and I are

considering making our own laundry detergent but are concerned as

Fels-Naptha is known to be an irritant.Thanks

Becca

Super Mom to the Minis

and Kayla, 5 years old

22 months old

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~

April is Autism Awareness Month

But EVERY DAY is Autism Awareness Day

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~

[Guest guest]

> My 5 year old is driving me crazy. She has autism. She has fairly good

language,some echolahia(sp?). She is very hyper,some stimmy behavior, and spends

her free time trying to piss me off.She gets a real trill out of being bad.She

dumps things eggs ,shampoo you name it.Poor independent play skills play skills

but will not sit and play with me or listen to a story.Climbs on everything.

At my house, climbing on everything meant yeast overgrowth. Most of the other

symptoms also meant yeast at one time or another. Try increasing the yeast

protocol, see if that helps.

http://www.danasview.net/yeast.htm

Dana