Re: To CK

June 29, 2001

Thanks for writing, Donna, and I'm sorry I haven't written sooner. As you

can probably guess, things have been pretty dreadful around here lately. I

don't know what's going on -- puberty, medication issues, autism, Down

syndrome. We're all in a bit of a muddle, and are losing control pretty

quickly.

The gist of what's been happening is that we have lost the ability to keep

Ian safe. Earlier this week, he ran out into the middle of a busy road and

we couldn't get him back to safety without wrestling. I couldn't carry him

anymore -- he's just too big, heavy, and strong for me to do that. The next

day, at a routine doctor's visit (for his constipation), he had a meltdown

and tore the office apart in an effort to get away from me, while I was

trying to keep him from running out into the parking lot and road (which he

had alredy done twice). The doctor witnessed his behavior, which is kind of

like a nice bookend, since that's how she finally believed me that something

was wrong in the first place (years ago, when he was first doing this, she

didn't quite believe what I was saying, until I had to chase him all over

her office building).

In any case, we've been considering a residential setting for him for a

while, but as my husband says, until last week, you'd have had to hold a gun

to my head to even consider it, and even then I'd still refuse. But now, I

don't know, things are just so difficult, and I guess I'm just worn out. I

don't care if he hurts me -- and I have bruises up and down my body to show

that he has -- but when he starts to hurt my other children, and to scare

them -- no mother should have to wrestle her son into submission, and no

child should have to watch his mother do that to his sibling. This is just

all wrong, and it's breaking our hearts, trying to decide what to do.

Either way, we're in pain.

So we've been thinking about Pathfinder Village, which is about 3 hours from

where we live, but which we hear is fabulous. We'll be visiting them next

month to see if he'll be a good fit. I don't know what we'll end up doing,

but whatever we decide, it's going to be a tough call.

That just about fills you in on what's going on here. Thank you for writing

and caring.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

June 30, 2001

Wow ! CK ,

My heart goes out to you at this time . It brought me many

memories , just to know thats exactly what we went through with our

son for so many years , until this Feb . 2001 . It really

sounds like the combo crisis . I can totally relate . That was my

biggest concern safety and growing too big to handle , I even have a

small cyst near my spine , lower back area . You can imagine trying

to lift him . Definitely needed an answer . I also did not know what

to do , but I finally found it for now . So you do what you have to ,

I know its very stressful and you must find out whats triggering his

behavior . The meds are definitely not working for him , but then you

said he was constipated, so maybe that triggered it , too . What else

did Ian's doctor say after witnessing his behavior ? The same thing

happen with my son's Ped . doc , thats when he had agreed with not

just Down Syndrome . Sometimes the Show and Tell behavior comes in

handy to open eyes . Should you decide to take him to the Pathfinder

Village . It might have to be the answer for now , I hope they could

pinpoint it . I know it'll be a tough decision . Prayers your way , a

huge HUG !

Irma , 12, DS/ASD .

- In @y..., " CK " <ckc@r...> wrote:

> Thanks for writing, Donna, and I'm sorry I haven't written sooner.

As you

> can probably guess, things have been pretty dreadful around here

lately. I

> don't know what's going on -- puberty, medication issues, autism,

Down

> syndrome. We're all in a bit of a muddle, and are losing control

pretty

> quickly.

>

> The gist of what's been happening is that we have lost the ability

to keep

> Ian safe. Earlier this week, he ran out into the middle of a busy

road and

> we couldn't get him back to safety without wrestling. I couldn't

carry him

> anymore -- he's just too big, heavy, and strong for me to do that.

The next

> day, at a routine doctor's visit (for his constipation), he had a

meltdown

> and tore the office apart in an effort to get away from me, while I

was

> trying to keep him from running out into the parking lot and road

(which he

> had alredy done twice). The doctor witnessed his behavior, which

is kind of

> like a nice bookend, since that's how she finally believed me that

something

> was wrong in the first place (years ago, when he was first doing

this, she

> didn't quite believe what I was saying, until I had to chase him

all over

> her office building).

>

> In any case, we've been considering a residential setting for him

for a

> while, but as my husband says, until last week, you'd have had to

hold a gun

> to my head to even consider it, and even then I'd still refuse.

But now, I

> don't know, things are just so difficult, and I guess I'm just worn

out. I

> don't care if he hurts me -- and I have bruises up and down my body

to show

> that he has -- but when he starts to hurt my other children, and to

scare

> them -- no mother should have to wrestle her son into submission,

and no

> child should have to watch his mother do that to his sibling. This

is just

> all wrong, and it's breaking our hearts, trying to decide what to

do.

> Either way, we're in pain.

>

> So we've been thinking about Pathfinder Village, which is about 3

hours from

> where we live, but which we hear is fabulous. We'll be visiting

them next

> month to see if he'll be a good fit. I don't know what we'll end

up doing,

> but whatever we decide, it's going to be a tough call.

>

> That just about fills you in on what's going on here. Thank you

for writing

> and caring.

>

> CK,

> Mom to Ian (2/89),

> (9/90),

> and Rose (6/94)

June 30, 2001

In a message dated 6/30/01 1:53:13 AM Eastern Daylight Time,

ckc@... writes:

> , but as my husband says, until last week, you'd have had to hold a gun

> to my head to even consider it, and even then I'd still refuse. But now, I

> don't know, things are just so difficult, and I guess I'm just worn out. I

> don't care if he hurts me -- and I have bruises up and down my body to show

> that he has -- but when he starts to hurt my other children, and to scare

> them -- no mother should have to wrestle her son into submission, and no

> child should have to watch his mother do that to his sibling. This is just

> all wrong, and it's breaking our hearts, trying to decide what to do.

> Either way, we're in pain.

>

Oh CK!!!!! And my heart is breaking for you. Duff has a cousin who

had to make this wrenching decision a couple years ago also. The final

event that was the impetus in them placing their 10 year old son with autism

was when he threw their infant daughter down the steps. After a brief visit

to the hospital, she was ok, but mom and dad would never again be ok. They

spend a great deal of time visiting Danny and say that he is doing well and

enjoys his new home. Of course, they are in agony, but there comes a point

where you realize you can't sacrifice your other children. The wonderful

thing for them was that no one, NO ONE judged them. Not that that should

matter at all in the scheme of things, but it made living with their decision

much easier knowing that they indeed had family and friend support.

We're your friends CK and I'd like you to know that you will always have our

support in whatever decision you have to make. GIANT

{{{{{{{{{{{{hugs}}}}}}}}}}} to you and your hubby and stay strong and

together on your decision--whatever it is!!!! You are both going to need

each other more than you ever have before!!

I know you're busy, but pop in when you can and let us know how you are

making out!!!!

Donna

July 2, 2001

In a message dated 7/2/2001 10:37:06 PM EST, ckc@... writes:

<< I can't even begin to tell you the kind of profound

despair I am feeling right now, as I contemplate sending my baby away, as I

contemplate the lives my other children will have if I keep my baby here

with me, as I imagine his cries when I'm not there for him in the night,

when he realizes what we've done. >>

CK: Unless you have been there it is not possible for anyone to identify the

emotions you describe. I have been there with the exception of other

children living at home. However, we did have my huband's adult children

complaining we weren't visiting because of Ray. I ran myself into

business failure and financial disaster trying to keep him home and then when

his violence could have killed me, I finally placed him. I had a breakdown

emotionally and physically sleeping 12-14 hours a day for several weeks. He

was so close to 18 I wouldn't bring him home after the treatment center but

there was literally no place for him and I brought him home 9 months later.

He's 18-1/2 now. Neither of us are ready to have him placed but I know some

day we will have to go through that again and it will be devastating again.

Peggy

July 2, 2001

In a message dated 7/2/01 8:36:46 PM Pacific Daylight Time,

ckc@... writes:

<< My son was in tears tonight, asking if he could please have one night when

Ian wasn't having a tantrum in his room (he throws things against 's

wall, which they share between the rooms). We have a meeting with Ian's

psychiatrist on Thursday -- happy birthday to me -- and we'll visit

Pathfinders next week. I can't even begin to tell you the kind of profound

despair I am feeling right now, as I contemplate sending my baby away, as I

contemplate the lives my other children will have if I keep my baby here

with me, as I imagine his cries when I'm not there for him in the night,

when he realizes what we've done.

A friend of mine has a sister with a severe behavioral disorder. She's in

her late 30s, but emotionally behaves 11-12. She has been in a private

residence for about 20 years, and my friend and his mother visit her every

month. My friend says that after all these years, his sister still asks to

come home, and his mother still cries every time she leaves her daughter

behind.

This just isn't the life I imagined when I imagined my life. It makes me

feel so sad.

Thanks for listening.

CK >>

Oh my gosh CK. :-( I'm so sorry you're living this now. My prayers are

with you. I just can't even imagine what you are going through, but I

imagine the majority of us will face the same thing one day. Breaks my heart

to even think about it. So odd that we spend so much time protecting the

kids, then we have to turn around and protect everyone else from the kids.

(((((hugs)))))

Gail

July 2, 2001

Thank you all for your kind words and support. I'll try to answer each of

you individually, but I know you'll all understand if I don't get to that

right away. Things are rather overwhelming for me right now.

Today was an okay day -- took Ian, just the two of us, to lunch at 's

and to see SHREK, even bought him a small toy at KayBee's -- but tonight was

just awful. When Ian turned down the bath my husband had drawn, and my

husband gave it to our daughter instead, Ian pitched such a fit. Tore his

room apart, wrecked my closet, threw things all over the house, and pulled

his glasses apart. So he's without glasses right now. He likes to break

his glasses intentionally for a couple of reasons -- he knows it costs us

money to replace them so we get angry, and to fit the new ones onto him, we

have to take him to the mall, which he loves. So my husband is going to get

him new glasses, and the hope is that he won't need a fitting so we can

avoid the mall, with all its temptations and the danger he'll fight us

rather than leave willingly without toys. Rewarding him is the last thing

we want to do for this kind of behavior.

But what do I do? He needs glasses.

To be honest, I'm afraid that even if we make the decision to send Ian to

Pathfinders, they won't accept him because of his out of control behavior.

My son was in tears tonight, asking if he could please have one night when

Ian wasn't having a tantrum in his room (he throws things against 's

wall, which they share between the rooms). We have a meeting with Ian's

psychiatrist on Thursday -- happy birthday to me -- and we'll visit

Pathfinders next week. I can't even begin to tell you the kind of profound

despair I am feeling right now, as I contemplate sending my baby away, as I

contemplate the lives my other children will have if I keep my baby here

with me, as I imagine his cries when I'm not there for him in the night,

when he realizes what we've done.

A friend of mine has a sister with a severe behavioral disorder. She's in

her late 30s, but emotionally behaves 11-12. She has been in a private

residence for about 20 years, and my friend and his mother visit her every

month. My friend says that after all these years, his sister still asks to

come home, and his mother still cries every time she leaves her daughter

behind.

This just isn't the life I imagined when I imagined my life. It makes me

feel so sad.

Thanks for listening.

CK

July 3, 2001

In a message dated 7/2/01 11:36:42 PM Eastern Daylight Time,

ckc@... writes:

> This just isn't the life I imagined when I imagined my life. It makes me

> feel so sad.

CK,

I'm crying for you!!! I'm so very sorry!! I so wish there was

something we could do to help alleviate this grief!!! All we can do is let

you know how much we care. {{{{{{{{{{{{hugs}}}}}}}}}}} CK!!!

Donna

July 3, 2001

oh ck, my heart goes out for you, and many prayers for you, ian, and family,

this is a very hard decision to make. shawna.

Re: Re: To CK

> In a message dated 7/2/01 8:36:46 PM Pacific Daylight Time,

> ckc@... writes:

>

> << My son was in tears tonight, asking if he could please have one night

when

> Ian wasn't having a tantrum in his room (he throws things against 's

> wall, which they share between the rooms). We have a meeting with Ian's

> psychiatrist on Thursday -- happy birthday to me -- and we'll visit

> Pathfinders next week. I can't even begin to tell you the kind of

profound

> despair I am feeling right now, as I contemplate sending my baby away, as

I

> contemplate the lives my other children will have if I keep my baby here

> with me, as I imagine his cries when I'm not there for him in the night,

> when he realizes what we've done.

>

> A friend of mine has a sister with a severe behavioral disorder. She's

in

> her late 30s, but emotionally behaves 11-12. She has been in a private

> residence for about 20 years, and my friend and his mother visit her

every

> month. My friend says that after all these years, his sister still asks

to

> come home, and his mother still cries every time she leaves her daughter

> behind.

>

> This just isn't the life I imagined when I imagined my life. It makes me

> feel so sad.

>

> Thanks for listening.

>

> CK >>

>

> Oh my gosh CK. :-( I'm so sorry you're living this now. My prayers

are

> with you. I just can't even imagine what you are going through, but I

> imagine the majority of us will face the same thing one day. Breaks my

heart

> to even think about it. So odd that we spend so much time protecting the

> kids, then we have to turn around and protect everyone else from the kids.

> (((((hugs)))))

> Gail

>

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

> Checkout our homepage for information, bookmarks, and photos

of our kids. Share favorite bookmarks, ideas, and other information by

including them. Don't forget, messages are a permanent record of the

archives for our list.

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

>

July 3, 2001

Sorry to hear that. I hope everything is fine.

Y'll be in my prayers.

--- greenpak <greenpak@...> wrote:

> oh ck, my heart goes out for you, and many prayers

> for you, ian, and family,

> this is a very hard decision to make. shawna.

> Re: Re: To CK

>

> > In a message dated 7/2/01 8:36:46 PM Pacific

> Daylight Time,

> > ckc@... writes:

> >

> > << My son was in tears tonight, asking if he could

> please have one night

> when

> > Ian wasn't having a tantrum in his room (he

> throws things against 's

> > wall, which they share between the rooms). We

> have a meeting with Ian's

> > psychiatrist on Thursday -- happy birthday to me

> -- and we'll visit

> > Pathfinders next week. I can't even begin to

> tell you the kind of

> profound

> > despair I am feeling right now, as I contemplate

> sending my baby away, as

> I

> > contemplate the lives my other children will have

> if I keep my baby here

> > with me, as I imagine his cries when I'm not

> there for him in the night,

> > when he realizes what we've done.

> >

> > A friend of mine has a sister with a severe

> behavioral disorder. She's

> in

> > her late 30s, but emotionally behaves 11-12. She

> has been in a private

> > residence for about 20 years, and my friend and

> his mother visit her

> every

> > month. My friend says that after all these

> years, his sister still asks

> to

> > come home, and his mother still cries every time

> she leaves her daughter

> > behind.

> >

> > This just isn't the life I imagined when I

> imagined my life. It makes me

> > feel so sad.

> >

> > Thanks for listening.

> >

> > CK >>

> >

> > Oh my gosh CK. :-( I'm so sorry you're living

> this now. My prayers

> are

> > with you. I just can't even imagine what you are

> going through, but I

> > imagine the majority of us will face the same

> thing one day. Breaks my

> heart

> > to even think about it. So odd that we spend so

> much time protecting the

> > kids, then we have to turn around and protect

> everyone else from the kids.

> > (((((hugs)))))

> > Gail

> >

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

> > Checkout our homepage for information,

> bookmarks, and photos

> of our kids. Share favorite bookmarks, ideas, and

> other information by

> including them. Don't forget, messages are a

> permanent record of the

> archives for our list.

>

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

> >

July 4, 2001

CK,

I'm so sorry that things have gotten so rough lately. Huge HUGS!!! I hope

the trip to the psychiatrist is helpful. I can't remember if Ian has tried

meds with any success in the past for his behaviors. But I really hope the

Dr. can give him something to calm him down. Also I would highly recommend

that you get some medication for your emotional well being whatever you

decide to do with Ian. You sound like you are really in a very difficult

place right now. I have been there several times myself when Brook was

younger and have self-injurious behaviors and screaming all the time. It

turned out in his case to be terrible pain from GERD.

July 5, 2001

You are in my prayers. I can only imagine what you must be going

through...Cheri