Re: help!

[Guest guest]

Ok I think I'm newer at this than I thought....I have no idea what you are

talking about. What is ALD? What oil are you referring to? What is Mito? I'm

sorry to sound so dumb but all that is new to me. Could you please tell me more

about this and where I may find some information to read up on it?

The major regression I saw was when nna got her vaccinations at the age of

4. What she is going through now is frustrating because I have no idea what is

causing it or where it's coming from.......

Thanks

Pam

Re: HELP!

Has she had any immunizations in the last few months? Just wondering

since you said her change came after them at two. I am ignorant with

Rett, but it seems I read about a regression associated with it with

one's body as you describe with the hands and motion issues. Does

anyone here who is knowledgeable with Rett have any info on that?

This is very off the wall, but I couldn't help but see some parallels

with her behaviors and the issues with ALD. Have you considered trying

the oil to see if it may help? I know sometimes fatty acid disorders

are associated.

Her age, have you had any newer genetic testing performed? I was told

my my SIL who is an ER doctor that genetics are growing so quickly

within 2-3 yrs completely new tests are springing up from discoveries.

Have you considered seeking new tests to see if any of the

metabolic/mito things may apply to your daughter?

HTH, just brainstorming.

Debi

[Guest guest]

I apologize, I should have been more clear! ALD (adrenoleukodystrophy)

is not related to autism or Rett (that I know of), but it is

neuro-degenerative and a genetic condition, like Rett. It was made

famous in the early 1980's by a movie called Lorenzo's Oil, when the

father of a little boy Lorenzo discovered this oil could stop the

neuron degeneration. It's a combination of two oils, oleic & erucic

oils. Below explains the entire concept.

http://www.myelin.org/

Mito is short for mitochondria. It's the organelle in our body's cells

that make energy. It takes glucose, sugar, from our body and converts

it into a molecule called ATP, or adenosine triphosphate, that is used

to fuel most bodily processes. It's on a molecular process, rather

complicated, and sometimes an error happens in our cells making it,

which is known as a mitochondrial disorder. These disorders may also

be called metabolic disorders, sometimes metabolic impact the

mitochondria, sometimes they do not. To complicate things further,

mitochondria has its own DNA, where the cell in general has what is

know as nuclear DNA, that is what is in the nucleus of our cells.

Sometimes errors in mitochondrial function come straight from

mitochondrial DNA, or mDNA, and sometimes from the nuclear DNA, or

nDNA, that feed back into the mitochondrial process.

When you shared your daughter's regressions, it reminded me of the

events portrayed in the movie Lorenzo's Oil. ALD, what Lorenzo had,

and since it is a long-chain fatty acid disorder, that is sort of a

metabolic thing. Genetic testing/mitochondrial/metabolic testing may

or may not answer any questions as to what is going on with your

daughter, but typically if a regression happens so severely affecting

motor skills and cognitive function, it can be a sign of a

mitochondrial/metabolic disorder. Since they are constantly learning

of new disorders, I wondered if you have ruled out any of those in the

last few years. A good geneticist could look at what you do know and

test for others, or retest. Like I think Kassie on here was found to

have " quiet not silent " Rett, whereas just a few years ago no one

would have thought that was possible, either you had a full

presentation or didn't have it at all. Whereas a few years ago we

thought there were either/or genetic issues, researchers are now

learning more and more that there are sometimes many different genetic

variants that can feed into other genetic variants, the more we can

find which ones exist, the better we can know how to help our kids.

I hope this helps, I tend to get long-winded in all this, I find it

fascinating.

Debi

-

[Guest guest]

Yep, that'd be me, 'minor' mecp2 mutation. It sounds like nna (is that

right?) is in the less obvious range too, if she is speaking and able to trash

her room so effectively? Or am I reading things in, if so I apologize.

A slight nitpicky clarification: Rett is progressive, not degenerative. There is

a difference. A progressive condition moves through stages in a roughly

predictable order, a degenerative condition, it gets worse and worse and worse

and you die. With Rett some things DO get worse (movement seems to be a big one,

and digestion. Not sure the connection there...) but other things actually get

better...a lot of girls with more obvious RS relate better, stop having seizures

(I'm still waiting on this one) and there's other changes too with age. It's not

all uphill or downhill, just a change. And with Speech Preserved Variant they

don't have much clue that I've seen.

Good luck. I wish I had some actual HELP. Changes are frustrating.

Kassiane

> Like I think Kassie on here was

> found to

> have " quiet not silent " Rett, whereas just a few

> years ago no one

> would have thought that was possible, either you had a full

> presentation or didn't have it at all.

[Guest guest]

Yep, that'd be me, 'minor' mecp2 mutation. It sounds like nna (is that

right?) is in the less obvious range too, if she is speaking and able to trash

her room so effectively? Or am I reading things in, if so I apologize.

A slight nitpicky clarification: Rett is progressive, not degenerative. There is

a difference. A progressive condition moves through stages in a roughly

predictable order, a degenerative condition, it gets worse and worse and worse

and you die. With Rett some things DO get worse (movement seems to be a big one,

and digestion. Not sure the connection there...) but other things actually get

better...a lot of girls with more obvious RS relate better, stop having seizures

(I'm still waiting on this one) and there's other changes too with age. It's not

all uphill or downhill, just a change. And with Speech Preserved Variant they

don't have much clue that I've seen.

Good luck. I wish I had some actual HELP. Changes are frustrating.

Kassiane

> Like I think Kassie on here was

> found to

> have " quiet not silent " Rett, whereas just a few

> years ago no one

> would have thought that was possible, either you had a full

> presentation or didn't have it at all.

[Guest guest]

>

> Hi. I am very new to this group and Autism in general. I usually

just read the posts on here but I really need some help here. Things

have been spiraling out of control. My daughter is 10 yrs. old. She

has been diagnosed with Cerebral Palsy, Epilepsy and Rett with

Autistic tendencies. She takes meds. for her seizures and has the VNS

to help control them somewhat. She also takes meds. for mood control.

Over the past couple of months or so nna has changed. She doesn't

understand anything that is said to her, her voice is very Monotone,

she has been having violent mood swings, is extremely easily agitated,

and has taken up playing with dog poop! When I try and explain to her

what I am trying to say, she starts screaming at me, gets very upset

and starts saying random things that make no sense. She also cannot

tolerate any loud noises, she can't pay attention for longer than a

couple of minutes at a time, and she rocks relentlessly. She's having

a lot of difficulty using her hands, especially with writing. This is

extremely difficult for her and she will refuse most of the time. Math

confuses her, hence making her angry. Or when she does try to write

she can't get the letters right and gets very angry and tears up the

paper. But, her reading has improved greatly?? She is reading at age

level now whereas everything else has declined. She has no

organizational skills at all. Her room is always trashed either by not

taking care of things or things are just destroyed by her while she is

in there. She doesn't pay attention at all, she'll just walk right

into traffic if I don't have her hand. She wanders off a lot or she

just leaves because she is upset and not thinking clearly. I think she

is Autistic, where her doctors don't think so. It's funny though,

nna was perfectly fine up until she turned four and she had her

immunizations. Right after that, the seizures started, she regressed

greatly and hasn't been the same since. Before that, she was reading,

writing, smiling, and coordinated. Now she doesn't smile a

> nymore or write and she is unsteady on her feet (she can't walk a

straight line to save her life) I am looking for some suggestions on

how to deal with all this new stuff. I have tried everything and

nothing works. I feel awful that I can't help her. But, like I said, I

am very new to Autism as a whole, so I don't know what I should and

shouldn't be doing. If anyone has any suggestion that I can try I

would be greatly appreciative.

> Thanks!

> Pam and nna 10 yrs.

>

>

>

[Guest guest]

> >

> > Hi. I am very new to this group and Autism in general. I usually

> just read the posts on here but I really need some help here. Things

> have been spiraling out of control. My daughter is 10 yrs. old. She

> has been diagnosed with Cerebral Palsy, Epilepsy and Rett with

> Autistic tendencies. She takes meds. for her seizures and has the

VNS

> to help control them somewhat. She also takes meds. for mood

control.

> Over the past couple of months or so nna has changed. She

doesn't

> understand anything that is said to her, her voice is very Monotone,

> she has been having violent mood swings, is extremely easily

agitated,

> and has taken up playing with dog poop! When I try and explain to

her

> what I am trying to say, she starts screaming at me, gets very upset

> and starts saying random things that make no sense. She also cannot

> tolerate any loud noises, she can't pay attention for longer than a

> couple of minutes at a time, and she rocks relentlessly. She's

having

> a lot of difficulty using her hands, especially with writing. This

is

> extremely difficult for her and she will refuse most of the time.

Math

> confuses her, hence making her angry. Or when she does try to write

> she can't get the letters right and gets very angry and tears up the

> paper. But, her reading has improved greatly?? She is reading at age

> level now whereas everything else has declined. She has no

> organizational skills at all. Her room is always trashed either by

not

> taking care of things or things are just destroyed by her while she

is

> in there. She doesn't pay attention at all, she'll just walk right

> into traffic if I don't have her hand. She wanders off a lot or she

> just leaves because she is upset and not thinking clearly. I think

she

> is Autistic, where her doctors don't think so. It's funny though,

> nna was perfectly fine up until she turned four and she had her

> immunizations. Right after that, the seizures started, she regressed

> greatly and hasn't been the same since. Before that, she was

reading,

> writing, smiling, and coordinated. Now she doesn't smile a

> > nymore or write and she is unsteady on her feet (she can't walk a

> straight line to save her life) I am looking for some suggestions on

> how to deal with all this new stuff. I have tried everything and

> nothing works. I feel awful that I can't help her. But, like I

said, I

> am very new to Autism as a whole, so I don't know what I should and

> shouldn't be doing. If anyone has any suggestion that I can try I

> would be greatly appreciative.

> > Thanks!

> > Pam and nna 10 yrs.

> >

> >

> >

[Guest guest]

BJ, it is her hands contaminated, but she says if she washes them the way she

wants to then they are ok but she doesn't have time in the morning. I assume her

shoes are again contaminated and she finished her handwashing ritual for the

morning and therefore doesn't want to have to do it again, she also wouldn't

sleep in her bed until I washed everything, I made her but then would 'rinse

off' every morning, setting her back even more. I will be sure and mention the

certain therapies to her therapist on Monday and move on from there.

> >

> > Can anyone tell me what I am supposed to do when in the morning my daughter

won'tput on her glasses or shoes because she doesn't want to contaminate her

hands again and now today I got a text from her that she is on the deck because

she doesn't want to get her key out and then have to wash her hands. How do I do

this??? I am sure enabling is not the answer but how else do I get her to school

in the morning? She is escalating and we don't see a psychiatrist until Nov.

16th! What can I do in the meantime????

> >

>

[Guest guest]

Shani,

Can she put on her glasses before washing her hands? Does she have any shoes

that she can step into rather than tie or buckle? Depending on her age, where

you live, and how long she has to be home alone, it might be ok to tell her that

if she can't get her key out, she will have to wait on the deck until you come

home. Obviously she was able to touch her cell phone. I'm sorry she's getting

worse. You're right that you don't want to enable, but you also have to pick

your battles, especially at the beginning (or just before the beginning) of

treatment.

Thinking of you,

(mom w/OCD, 10 yo dd w/OCD)

>

> Subject: help!

> To:

> Date: Thursday, October 7, 2010, 5:17 PM

> Can anyone tell me what I am supposed

> to do when in the morning my daughter won'tput on her

> glasses or shoes because she doesn't want to contaminate her

> hands again and now today I got a text from her that she is

> on the deck because she doesn't want to get her key out and

> then have to wash her hands. How do I do this??? I am sure

> enabling is not the answer but how else do I get her to

> school in the morning? She is escalating and we don't see a

> psychiatrist until Nov. 16th! What can I do in the

> meantime????

>

>

>

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[Guest guest]

Hi Shani, our 12-year-old OCD daughter has many contamination issues similar to

your daughter's (wouldn't wear contaminated glasses on her face, would never

touch or tie her shoes, etc). Our therapist made her practice touching and

tying her shoes and then cope with the anxiety she felt. With practice, she got

to the point where she could tie them again! The therapist told us to let her

experience the natural consequences of her behaviors...being embarrassed that

her shoes were untied, etc...One other parent on this site suggested that my

daughter try to touch her glasses with her pinkie for one minute, then the next

day try two minutes, etc...gradually building up to putting them near and then

ultimately on her face. But it all takes time unfortunately ... no quick or

easy answers. Joanne

>

> Can anyone tell me what I am supposed to do when in the morning my daughter

won'tput on her glasses or shoes because she doesn't want to contaminate her

hands again and now today I got a text from her that she is on the deck because

she doesn't want to get her key out and then have to wash her hands. How do I do

this??? I am sure enabling is not the answer but how else do I get her to school

in the morning? She is escalating and we don't see a psychiatrist until Nov.

16th! What can I do in the meantime????

>

[Guest guest]

Know that you are not alone and truly others have been through this and have

felt the same desperation you do. I have! I know how overwhelming it is to feel

you cannot impact your child's behavior, and to see him suffer so wretchedly.

You said son was in hospital for 2 days - did they not address the emotional

side of his disorder? They should have sent him on to a psych unit or intensive

outpatient treatment. I don't know how they could have just sent him back home

knowing that he is having issues with eating. That is usually a red flag that

will get a child into any treatment program.

What options do you have around your area for inpatient or outpatient anxiety

treatment? I drove an hour and a half each way to the hospital and outpatient

units we used. If you can locate an inpatient and outpatient, you can then take

him to ER and ask for a psych evaluation. They can then refer him on to

treatment. I was very nervous about putting my son into a " psych " unit -- what

would other people think, etc, etc. Actually because it was so far away, very

few people even found out. I just said he was having some tests done. It saved

his life.

Rhonda

Help!

I'm so scared!! I don't feel capable of handling what my life is giving me.

How can I help my son if I lose my mind??

No virus found in this message.

Checked by AVG - www.avg.com

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[Guest guest]

Know that you are not alone and truly others have been through this and have

felt the same desperation you do. I have! I know how overwhelming it is to feel

you cannot impact your child's behavior, and to see him suffer so wretchedly.

You said son was in hospital for 2 days - did they not address the emotional

side of his disorder? They should have sent him on to a psych unit or intensive

outpatient treatment. I don't know how they could have just sent him back home

knowing that he is having issues with eating. That is usually a red flag that

will get a child into any treatment program.

What options do you have around your area for inpatient or outpatient anxiety

treatment? I drove an hour and a half each way to the hospital and outpatient

units we used. If you can locate an inpatient and outpatient, you can then take

him to ER and ask for a psych evaluation. They can then refer him on to

treatment. I was very nervous about putting my son into a " psych " unit -- what

would other people think, etc, etc. Actually because it was so far away, very

few people even found out. I just said he was having some tests done. It saved

his life.

Rhonda

Help!

I'm so scared!! I don't feel capable of handling what my life is giving me.

How can I help my son if I lose my mind??

No virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.2195 / Virus Database: 2437/5131 - Release Date: 07/14/12

[Guest guest]

We have all felt like this at some point. Take a deep breath, try to carve out a

tiny bit of time to do something for YOU. See a therapist yourself. You CAN do

this.Things will get better. You just have to put one foot in front of the other

and keep walking. Try to not be afraid because that does not help you to manage

the crisis in the moment. Find good help.If this means inpatinet or IOP that is

what you need to do. You need someone who specializes in OCD in young children.

I can not stress this enough. With the right help and support, you will find

improvement and a calmer place in life. I became profoundly depressed at one

point about 8 years ago when we had to put our son on meds ( 5 years into the

dx). I had multiple other stressors too, marital problems etc. If you had asked

me if I would ever get depressed in my life, I would have said no, but it was

the straw that broke the camels back. I needed help ( very hard for me to

admit- I am a I can do everything and I can do it better than anyone kind of

person). I started seeing a therapist weekly for myself, started anti

depressants, went to family therapy weekly, went to my son's therapist weekly.

Seriously felt like I needed to quit my job ( but did not) to keep up with my

therapy schedule. I will say it was a crappy time of my life and feel like I

lost my mind. Had thoughts of killing someone, anyone in my family or running

away or anything just to get away from my life. But guess what? I just kept

doing the next right thing, spent a lot of time with The Serenity Prayer (God,

grant me the serenity to accept the things I can not change, the courage to

change the things I can and the wisdom to know the difference) and got through

it.

I am now happy, healthy, and off all meds for several years. I still see a

therapist every couple weeks, my son ( almost 16 now ) is doing great ( still

has issues here and there but over all totally great). I have faith that if you

just focus on getting through today, and get the support and expert help you

need, you CAN do this. Even if you loose your mind, you CAN DO THIS- you just

have to take steps to get your mind back at the same time.

Hang in there. Most of us have been where you are right now, and are still here

to tell the tale. WE all understand. We are always here to listen to those

concerns.

[Guest guest]

We have all felt like this at some point. Take a deep breath, try to carve out a

tiny bit of time to do something for YOU. See a therapist yourself. You CAN do

this.Things will get better. You just have to put one foot in front of the other

and keep walking. Try to not be afraid because that does not help you to manage

the crisis in the moment. Find good help.If this means inpatinet or IOP that is

what you need to do. You need someone who specializes in OCD in young children.

I can not stress this enough. With the right help and support, you will find

improvement and a calmer place in life. I became profoundly depressed at one

point about 8 years ago when we had to put our son on meds ( 5 years into the

dx). I had multiple other stressors too, marital problems etc. If you had asked

me if I would ever get depressed in my life, I would have said no, but it was

the straw that broke the camels back. I needed help ( very hard for me to

admit- I am a I can do everything and I can do it better than anyone kind of

person). I started seeing a therapist weekly for myself, started anti

depressants, went to family therapy weekly, went to my son's therapist weekly.

Seriously felt like I needed to quit my job ( but did not) to keep up with my

therapy schedule. I will say it was a crappy time of my life and feel like I

lost my mind. Had thoughts of killing someone, anyone in my family or running

away or anything just to get away from my life. But guess what? I just kept

doing the next right thing, spent a lot of time with The Serenity Prayer (God,

grant me the serenity to accept the things I can not change, the courage to

change the things I can and the wisdom to know the difference) and got through

it.

I am now happy, healthy, and off all meds for several years. I still see a

therapist every couple weeks, my son ( almost 16 now ) is doing great ( still

has issues here and there but over all totally great). I have faith that if you

just focus on getting through today, and get the support and expert help you

need, you CAN do this. Even if you loose your mind, you CAN DO THIS- you just

have to take steps to get your mind back at the same time.

Hang in there. Most of us have been where you are right now, and are still here

to tell the tale. WE all understand. We are always here to listen to those

concerns.

[Guest guest]

You have already got some very good advice from both Rhonda and . I'm just

adding my post to say I've been there too, not sure I ever did get my mind back,

kind of feel it doesn't matter anymore (just a bit of humour)

Allow yourself to feel scared, and become clear what you are most scared of.

Then look at what you are doing about that. In other words, despite your fear,

and feeling like you can't do this another minute, you ARE! It just feels like

you can't bear it anymore, that's a feeling, you can feel this way and still

move, although it doesn't feel good.

You may need to take time away from your situation, just to feel you can breath,

and then be able to think and become clearer what you need. Don't feel that you

can't do this, you must. I used to go to Chapters when my husband got home, and

just stay there and read to steady my mind and forget about everything.

Look at what you have for support for yourself. You might try writing a list of

what you feel you can't deal with. I find writing helps calm me down, something

about getting it all out of my head. Then look at it and give yourself time to

think about options. Who can help? What do you need/want to do? etc.

It sounds like you may be at a breaking point, and that's not necessarily a bad

thing. Sometimes it helps us move forward with choices we find hard to take.

Or sometimes it makes us really look at our own needs. Remember the oxygen mask

rule, got to put yours on first if you are going to be around to help anyone

else!

Hang in there. Many here understand and are here to help carry you through

this. Just reach out and ask for what you need. I'm sending you a BIG HUG

through cyber space!!!

Warmly,

Barb

>

> I'm so scared!! I don't feel capable of handling what my life is giving me.

> How can I help my son if I lose my mind??

>

[Guest guest]

We are struggling more this summer and I am feeling overwhelmed as well.  I did

not anticipate this cycle of OCD at all so it is harder to pull together a

plan.  What is helping so far: telling many more friends and family more details

about the OCD and the impact on our family. Somehow this is helping me a lot. 

Also, a separate counselor for us (parents) to sort out the therapy/treatment

decisions around it.  And coming up, counseling just for me to help cope with

the challenge of a special needs child.  One of the strains I am noticing is

that all of life sort of goes on hold- we are just doing okay or sub-par at

everything and that is a bit frustrating to feel like we are not excelling

at much right now.  And I keep breathing deeply.

 

BTW- Someone suggested book titles: Brain Lock, and also You are not your Brain,

both by Schwartz.  Thank you!  Brain Lock is working really well with my

son (Dad is reading it aloud to him in chapters each night) and You are Not your

Brain is great for me and my own anxiety.

[Guest guest]

Tara - I'm sorry if you've shared and I missed it, but could you say more about

what's happening? I remember you were asking about meds . . .

Rhonda

Re: Help!

We are struggling more this summer and I am feeling overwhelmed as well. I

did not anticipate this cycle of OCD at all so it is harder to pull together a

plan. What is helping so far: telling many more friends and family more details

about the OCD and the impact on our family. Somehow this is helping me a lot.

Also, a separate counselor for us (parents) to sort out the therapy/treatment

decisions around it. And coming up, counseling just for me to help cope with

the challenge of a special needs child. One of the strains I am noticing is

that all of life sort of goes on hold- we are just doing okay or sub-par at

everything and that is a bit frustrating to feel like we are not excelling at

much right now. And I keep breathing deeply.

BTW- Someone suggested book titles: Brain Lock, and also You are not your

Brain, both by Schwartz. Thank you! Brain Lock is working really well

with my son (Dad is reading it aloud to him in chapters each night) and You are

Not your Brain is great for me and my own anxiety.

[Guest guest]

Thankyou to everyone who replied! I feel very

Alone and your support helps!

Debbie

Sent from my iPhone

> You have already got some very good advice from both Rhonda and . I'm

just adding my post to say I've been there too, not sure I ever did get my mind

back, kind of feel it doesn't matter anymore (just a bit of humour)

>

> Allow yourself to feel scared, and become clear what you are most scared of.

Then look at what you are doing about that. In other words, despite your fear,

and feeling like you can't do this another minute, you ARE! It just feels like

you can't bear it anymore, that's a feeling, you can feel this way and still

move, although it doesn't feel good.

>

> You may need to take time away from your situation, just to feel you can

breath, and then be able to think and become clearer what you need. Don't feel

that you can't do this, you must. I used to go to Chapters when my husband got

home, and just stay there and read to steady my mind and forget about

everything.

>

> Look at what you have for support for yourself. You might try writing a list

of what you feel you can't deal with. I find writing helps calm me down,

something about getting it all out of my head. Then look at it and give yourself

time to think about options. Who can help? What do you need/want to do? etc.

>

> It sounds like you may be at a breaking point, and that's not necessarily a

bad thing. Sometimes it helps us move forward with choices we find hard to take.

Or sometimes it makes us really look at our own needs. Remember the oxygen mask

rule, got to put yours on first if you are going to be around to help anyone

else!

>

> Hang in there. Many here understand and are here to help carry you through

this. Just reach out and ask for what you need. I'm sending you a BIG HUG

through cyber space!!!

>

> Warmly,

> Barb

>

>

>

> >

> > I'm so scared!! I don't feel capable of handling what my life is giving me.

> > How can I help my son if I lose my mind??

> >

>

>

[Guest guest]

I remember feeling like this.  It WILL get better.  I would actually tell

myself, " You can't help (my ds) if you fall apart yourself " .  This support

group, reading everything I could get my hands on about OCD, and sharing my

worries and fears with a very few carefully selected friends and family was what

got me through the worst times. Heck, it is still getting me through rough

patches.  Also, as will second, chocolate!  You are doing the best you

can.  You love your son and are trying to learn what to do to help him--It is a

very good start.  Sending cyber hugs to you.

, mom to Ethan, 16y, OCD, GAD

________________________________

To:

Sent: Saturday, July 14, 2012 11:51 PM

Subject: Help!

 

I'm so scared!! I don't feel capable of handling what my life is giving me.

How can I help my son if I lose my mind??

[Guest guest]

Sorry to hear you are going through a rough period. An important piece is not

to make comparisons with your family and any other family. First of all, no one

knows what is going on in anyone else's family, and second of all, comparisons

always make people wind up feeling " less " . I think those with OCD deserve

medals for their bravery in having to face fears that others never see, so each

accomplishment is extra special. Their families who support them deserve their

own special medals. We all need to give ourselves our own pats of the back for

our strength and for continuing to put one foot in front of the other on those

days or during those phases of life when it seems like a huge things to do.

Re: Help!

We are struggling more this summer and I am feeling overwhelmed as well. I did

not anticipate this cycle of OCD at all so it is harder to pull together a plan.

What is helping so far: telling many more friends and family more details about

the OCD and the impact on our family. Somehow this is helping me a lot. Also, a

separate counselor for us (parents) to sort out the therapy/treatment decisions

around it. And coming up, counseling just for me to help cope with the

challenge of a special needs child. One of the strains I am noticing is that

all of life sort of goes on hold- we are just doing okay or sub-par at

everything and that is a bit frustrating to feel like we are not excelling at

much right now. And I keep breathing deeply.

BTW- Someone suggested book titles: Brain Lock, and also You are not your Brain,

both by Schwartz. Thank you! Brain Lock is working really well with my

son (Dad is reading it aloud to him in chapters each night) and You are Not your

Brain is great for me and my own anxiety.

[Guest guest]

All good points to remember. When things are really bad with the OCD son or the

BP son or my BP dh, I have a tendency to separate and dissociate. Not the best

coping strategy but maybe it is a way for myself to get a break from the

craziness. I have a friend at work who I always talk to when I can who has stuff

going on with her daughter. We usually check in with each other. It really does

help to talk with people who understand. Otherwise, I can only share so much

before I get alot of blank stares or shifting eyes like they want to get out of

the conversation as quickly as possible. My friend and I realize that it is not

a quick fix and that there are ups and downs. We also laugh alot about our

situations.

It is tough too not that we are half way through summer and some parents don't

have a break, as in structured school setting. 24-7 with kids (or husbands) can

be really hard, especially if there are extra issues involved. Luckily, my son

is older and pretty stable now. Sometimes respite care is an option just so you

can catch your breath. in WI

-55

Roy-17. OCD/Anxiety/Depression. ADD.

ds-22.BP

ds-20.Anxiety/Depression

dd-24. Anxiety, ADHD

dh-BP, Anxiety, ADHD

>

> Sorry to hear you are going through a rough period. An important piece is not

to make comparisons with your family and any other