Re: Re: daughter with aspergers

[Guest guest]

Hi Miriam,

My son will be 14 in a few months and he too has gotten worse since he hit

puberty. He too is very head strong and doesn't like people in control of him.

But our refuge, at least right now, is knowing he is too affraid of the " world

our there " . So I don't see him moving out as soon as he turns 18.

Our goal is too get him an education and teach him life and coping skills so he

can lead an independant life one day. It might not be as soon as he would like

or as soon as my older two kids moved out but he will NOT be sitting on my couch

at 30 playing Xbox and eating potatoe chips! Or even 25, for that matter!

This has to be your goal too. For your sake and your daughters. Not that it

isn't already, I'm sure, but you have to have that mind set that it IS going to

happen. You have to assume competance. If you assume they aren't going to make

it, then you will potentially project that mind set. All we moms AND dads can do

is do everything we can to teach them the skills they'll need and to ensure they

have an education. Then the rest is in God's hands.

My two older children, one ADD, the other ADHD, have both encountered bumps in

the road since they have decided to be out on their own. I didn't think they

were ready but they did. It might take them longer and be more difficult for

them and as parents we want to protect them from that, but I've had to learn to

let go. With my Aspergers son it will be more difficult I'm sure, but it will

have to happen.

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.

Anyway, I'm sure I'm preaching to the choir. I hope things work out for you and

your daughter. :-)

ne

> From: amycall45 <amycall@...>

> Subject: ( ) Re: daughter with aspergers

>

> Date: Tuesday, December 14, 2010, 11:07 AM

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> Thank you, Pam.

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> 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.

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> 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.

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> 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.

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> 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.

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> Thanks.

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> miriam

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> > >

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> > > Hello,

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> > >

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> > > My daughter is 14 and is an Aspergers child. I

> have tried to keep it secret

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> > > for all of her life, hoping she might outgrow at

> least some of it. We are

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

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> > >

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> > > Instead of getting better, it gets worse and

> worse. I am at a breaking

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

> Done.

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> > >

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> > > I am just finally ready to beg for help. I will

> not drug my child. I am

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

> her, either.

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> > >

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> > > I want to learn from others who have wisdom and

> experience in this area.

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> > >

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> > > So, sooooo desperate.

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> > > Miriam

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[Guest guest]

" Mimi " , I had to laugh at your post. I can SO relate. I don't know how many

times I've felt the same way. Especially when I've followed all the advice and

try to do all the right things on my part only to get another phone call from

the school that my son is getting suspended yet again.

But I have to fight the urge to see doom and gloom in our future. I try to keep

myself motivated and pass a little on to others.

I do " get " where you're coming from...

ne

> From: Mimi <sue@...>

> Subject: ( ) Re: daughter with aspergers

>

> Date: Wednesday, December 15, 2010, 10:44 AM

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> 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!

>

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> 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.

>

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[Guest guest]

I'm living on my own and supporting myself (barely-- it's a rough economy, but I'm getting there). I don't know what my parents thought when I was fourteen, but not knowing that I had AS they were scared that I wouldn't be able to " make it " in the world. Is your daughter going to college? Anyway, let's say she is. She will be 22 or 23 when she graduates. When you're an adult, it's easy to forget that 8-9 years is a long time for a teenager and a lot can happen then between the ages of 14-22/23 as opposed to 30-38. I am 30 years old and living in NYC. My parents had to help me out for years while I went from one dead-end job to another and another. Again, it is more the economy than anything else. I have a civil service job and I'm struggling to make ends meet (NYC is expensive!) but I'm more financially independent than I was a year ago and am working on getting my Master's. On Wed, Dec 15, 2010 at 5:23 PM, Pamela wrote: 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]

Dear Sue, I can totally identify with you about everything you said. Our son is 18 and he took 1 class at a community college this fall. He has a goal of becoming a video game designer, but I don’t think he has very realistic view of life because he says he doesn’t want to work! He has had a little 4 hour a week volunteer job since the end of July and already wants to quit. All he wants to do is play games on the computer and buy more and more Pokémon cards. I have a fear that I am headed toward the same thing you’re experiencing. ~ Kay From: [mailto: ] On Behalf Of MimiSent: Wednesday, December 15, 2010 7:45 AM Subject: ( ) Re: daughter with aspergers 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]

Hi Pam, I've been overwhelmed enough that I haven't been able to answer any emails for a while.  I'm sorry.Thanks for your sweet note.I think the hardest thing about my daughter is how strongly she reacts to everything.  When she was small, it was okay, because it was funny and cute.  Everything was *SO EXCITING*.  It was obvious to us that she was " extreme " but we couldn't change it, nor did we have to encourage it.  We just took it in stride and thought it was remarkably cute and funny for a little kid to treat every detail of life as if it was Christmas morning.  If she was " naughty " which wasn't often, I could put her on time out in the bathroom and she would stay there.

Now that she is almost 14 and her reactions to everything are still so extreme, it exhausts me.  It's wearing me out.  ...or it already has.  She's so excited all the time that when she is even within ten feet of me, I bristle and get tense because she's so strong, energetically.. and dominant and reactive, I feel like I'm going to get swallowed up.  I wear earplugs around her all the time because I've given up trying to get her to lower her voice.  At least 8 or more times a day, I say, " Lower your voice and calm your energy when you talk, please. "

When she eats, it's with excitement.  Her lips smack loudly and she cries that she can't change that.  I tried to sit with her the other day and I looked up at one point after asking her to slow down and she literally had food falling out of her mouth while she shoveled more in.  She eats like an excited wolf.  She finishes everything she gets within a couple of minutes.  When she was little, since she was my first child and I was fairly young, I just thought it was great that she would eat so much and so fast.  I trusted it.   " She's hungry.. I'll give her more. "  Despite how much she ate, she never ever was overweight.. in fact, she has stayed mostly small.  She'd often eat things without even chewing them up.  Like when she was little and I'd give her a hot dog.  She'd take bites.. large ones and swallow whole.  I'm pretty sure she still does this.  I can't eat near her.  I have to eat in a hiding place.  

She screams out in her sleep.  She wakes early excited each day for the new day.She's so excited all the time that she can't contain her own energy and it comes out in the form of tics all over her body.. rolling her shoulders, head, eyeballs, jerking her arms and wrists out....  It's hard for me to see. 

I basically just wish we could " turn down her volume " ... get her to a level 5 instead of level 11 with everything.  If level 10 is the highest and most extreme, my daughter is definitely an 11.  I'm worried that she is so intense and excited that she's going to drive herself crazy. 

We have three pets ... two cats and a dog.  She is obsessed with them.  Sneaks into the garage at night or early in the morning to hold the cats, which we've asked her not to hold, over and over and over.. because she is too hyper with them.  She plays with the dog until she wear the dog out.  She and her bedroom are ALWAYS completely covered in animal hair.  

So yes.. I guess the most difficult thing is just that she is too intense for us.. too excited.. too upset... way too happy... too loud.   " TOO " .THANKS for your compassion and time.

miriamOn Tue, Dec 14, 2010 at 7:29 AM, Pamela <susanonderko@...> wrote:

 

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]

{{{{Sue}}}} Hang in there, what choice do we have? We have the house plans all right but the contractor didn't show up. lol. Sometimes I do read these phrases, analogies and sayings that the professionals come up with and feel just like you. I want to scream that I wish it was really that simple. I think they have a general good message - make a plan. But nobody does talk about what happens when you can't implement that plan. What happens when the people who are supposed to show up to help you build the house don't bother to show up or they send in people who have never held a hammer before in their lives and know less than you do about how to build? And sometimes it feels so frustrating to see other people getting it to work when you can't. And worse if those people think it's that easy if you just do it the way they did it, with no clue as to different circumstances and different problems/needs. That can really rankle as well. We will have to get together someday and write a book about the underbelly of sped. lol.

Roxanna

"I

predict future happiness for Americans if they can prevent the government from wasting the labors of the people under the pretense of taking care of them." - Jefferson

( ) Re: daughter with aspergers

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.

>