Re: daughter with aspergers

[Guest guest]

My daughter is 13. It helps so much to have support for the

parent. My daughter's emotional regulation issues have gotten worse

but it helps me so much that I talk to the behaviorist weekly.

I don't feel so alone. Our psychiatrist is very conservative

with medication and we have only treated the anxiety which

was very extreme. What are some of the issues that are

the greatest concern?

Pam

>

> Hello,

>

> My daughter is 14 and is an Aspergers child. I have tried to keep it secret

> for all of her life, hoping she might outgrow at least some of it. We are

> literally in a daily juggling act with her.

>

> Instead of getting better, it gets worse and worse. I am at a breaking

> point, now. Okay, I admit it... I'm broken. Done.

>

> I am just finally ready to beg for help. I will not drug my child. I am

> clear on that much. But I do not want to hurt her, either.

>

> I want to learn from others who have wisdom and experience in this area.

>

> So, sooooo desperate.

>

> Miriam

>

[Guest guest]

Thank you, Pam.

Right now, my focus is on her moving out, quite actually. She is determined to

leave home as an adult and of course I would love this for her, but there are

basic things that I worry over. Her house would be terribly filthy, for

instance. I could see her not resisting having 24 cats as soon as she has the

chance.. and maybe a few dogs, too. I'm worried about how she will drive

herself around. There are so many things.. I hardly know where to begin. She

is so accident prone and her doctor was telling me how there is no way, even in

a few years from now that we should consider letting her drive. She may be able

to pass a driving test in a few years, but she is the type of kid who if there

was a light or something interesting going by.. or something distracting

happening, she cannot help herself and forgets all the time what she is doing.

And she also has a huge panic/reflex. Where something small could happen and

she jumps out of her skin.. hits the roof.

I just wish I could talk to people who are like this and have gone on to support

themselves. My husband worries, too. I know it seems silly because she is only

14, but our girl is so dominant/confident in many ways and has already made it

clear that as soon as she can, she's walking out the door and is going to start

her life. She can't stand others being in charge of her.

And truthfully, I don't know how long we can have her in our home. So, yes, I'm

thinking about all of this way ahead of time. I want to prepare.

I wonder if most moms here imagine that their child will just continue to live

with them as adults.. or if each case is totally unique and one can't guess.

Thanks.

miriam

> >

> > Hello,

> >

> > My daughter is 14 and is an Aspergers child. I have tried to keep it secret

> > for all of her life, hoping she might outgrow at least some of it. We are

> > literally in a daily juggling act with her.

> >

> > Instead of getting better, it gets worse and worse. I am at a breaking

> > point, now. Okay, I admit it... I'm broken. Done.

> >

> > I am just finally ready to beg for help. I will not drug my child. I am

> > clear on that much. But I do not want to hurt her, either.

> >

> > I want to learn from others who have wisdom and experience in this area.

> >

> > So, sooooo desperate.

> >

> > Miriam

> >

>

[Guest guest]

I grew up with undiagnosed AS. Tell me a bit about her.On Tue, Dec 14, 2010 at 4:05 AM, Amy Call wrote: Hello, My daughter is 14 and is an Aspergers child.  I have tried to keep it secret for all of her life, hoping she might outgrow at least some of it.  We are literally in a daily juggling act with her.   Instead of getting better, it gets worse and worse.  I am at a breaking point, now.  Okay, I admit it... I'm broken.  Done. I am just finally ready to beg for help.  I will not drug my child.  I am clear on that much.  But I do not want to hurt her, either.   I want to learn from others who have wisdom and experience in this area. So, sooooo desperate. Miriam

[Guest guest]

Please, let me rant a bit, and not at or about any one on the list, just all the

" good advice " in general that never works with us.

I sure hope in 's second book, he tells you how to deal with the termites

you found in the lumber to build this " house " from the blueprint, or what to do

with the dirt underneath that was unstable so you couldn't pour a foundation, or

contractors who couldn't use a hammer!

I have to laugh and think about that expression of the " best laid plans of mice

and men often go awry. "

Somehow, my " master plan " for DS keeps shrinking and shrinking. My expectations

keep getting lower and lower and my hopes smaller and smaller. Right now I am

just panicked at the thought that it is going to be like this with DS, 26, for

another six months, another year? Until I die? I can't find any solutions to get

him to meet these wonderful " plans and goals " I had.

It makes me more tired and feel even more guilty that somehow, if I'd had a

better plan or better implementation, or more regimentation, all would have

turned out to be happily ever after. Or even tolerable day to day! So this right

guy can just go stick it or even better, I'll send my child to live with him for

a while!

Thanks, I feel better now after letting off some steam. Today is particularly

bad day with DS.

Sue in Tn

> In the slaw book " From Emotions to Advocacy " , Pete says parents

should have a Master Plan " of what they want for their child. For instance for

your daughter, a highschool diploma, a drivers lisence, a college degree or

whatever it is that you want for her. Then you have to map out a plan on how

you're going to get there. Kind of like the blueprint when you're planning on

building a house. Once you have a plan, you have to help her get there.

>

[Guest guest]

It is distressing to think of your child as helpless. But it

doesn't help to have these thoughts and just be anxious.

It is very understanding though. I have moments too where

this creeps into my thinking.

I have felt better since I have looked into adult services for

a relative. My brother in law is 45 and still lives with his

father (my father in law). We set up a special needs trust

for him, he got on SSD and Medicare about 7 years ago.

The trust sets up that part of my father in laws estates goes ino a funds for

living expenses. In NJ we have a non profit group

called PlanNJ that provides services for a fee this is helpful

if you don't have siblings or relatives that will help. Almost

every state has a " pooled trust " for special needs populations

if you want to leave money into this trust (usually if you don't

have much assets to leave).

In NJ kids under 18 can get registered under the department of

disability. You really have to search for services.

What I imagine for my brother in law is that we set up housing, we have a social

worker or even

a home care aide to visit weekly or less to check if he needs

help with cleaning. We hope to set up that a social worker

or counselor meets with him often to make sure he is taking

his medication.

I focus on learning about services and that I want

to make sure family is not homeless. I try to share information

with our extended family so they understand the food stamp program

and the low income housing assistance (on hold right now, not

letting people on the list).

We all can have our children declared as our dependents (their guardians) , or

as their health quardians over the age of 18, put they

may not want that and fight it.

With my brother in law, I feel at peace that we have a lot

set up and we invite him over weekly, there is alot

we can't control. He spends more than he has, he gets into

arguments with the neighbors, he tells women he wants to

marry them and wonders why they get so mad when he doesn't

show up for dates etc. We can only control so much.

After a certain point I am content to say it is in God's hands.

That I have showed love and understanding. As long as we

are living we expect to help a lot. After we have to be in

peace that we set up as much as we could. With my own

child it is hard to keep that stiff upper lip though. Children

look so helpless to begin with. It is easier as they get older

I think.

Pam

> > >

> > > Hello,

> > >

> > > My daughter is 14 and is an Aspergers child. I have tried to keep it

secret

> > > for all of her life, hoping she might outgrow at least some of it. We are

> > > literally in a daily juggling act with her.

> > >

> > > Instead of getting better, it gets worse and worse. I am at a breaking

> > > point, now. Okay, I admit it... I'm broken. Done.

> > >

> > > I am just finally ready to beg for help. I will not drug my child. I am

> > > clear on that much. But I do not want to hurt her, either.

> > >

> > > I want to learn from others who have wisdom and experience in this area.

> > >

> > > So, sooooo desperate.

> > >

> > > Miriam

> > >

> >

>

[Guest guest]

Miriam I am a more shy quiet low key person myself and my daughter

too is very high energy and loud. Since I started on a low

dose of zoloft (50mg) I have been able to cope much much better.

It takes the edge off of being in a constant state of alarm.

I also can be more in a observer role of my daughter's behaviors.

It really helped me. I knew that zoloft would work for me

because my mother had no adverse reactions to it. Some people do better on

lexapro etc.

Since your daughter is not having angry outburts and hitting you and she does

not have a sleep disorder (right), she doesn't have

depression or has any kind of anxiety it is unlikely that a psychiatrist will

prescribe any medication for loudness, unless they

see her as hyper-active and treat her with a stimulant of some

sort or if she is manic/depressed.

How in the world does she settle down for sleep and how

does she get school work done? Don't the teachers

complain too?

Have a Merry Christmas!

Pam

> > >

> > > Hello,

> > >

> > > My daughter is 14 and is an Aspergers child. I have tried to keep it

> > secret

> > > for all of her life, hoping she might outgrow at least some of it. We are

> > > literally in a daily juggling act with her.

> > >

> > > Instead of getting better, it gets worse and worse. I am at a breaking

> > > point, now. Okay, I admit it... I'm broken. Done.

> > >

> > > I am just finally ready to beg for help. I will not drug my child. I am

> > > clear on that much. But I do not want to hurt her, either.

> > >

> > > I want to learn from others who have wisdom and experience in this area.

> > >

> > > So, sooooo desperate.

> > >

> > > Miriam

> > >

> >

> >

> >

>