RE: Just entering the diagnostic process

[Guest guest]

We have been there too. Hopefully now that the therapist has seen your daughters meltdowns, she can recommend her to a psychiatrist who can evaluate her for medications for her anxiety. As far as her social situation, you are doing the right things by coaching her. Keep trying to find a nice family with understanding that you can explain her issues. Even if they just play once in a while, it will be good for her.SuzanneSent on the Sprint® Now Network from my BlackBerry®From: "lisakrobb" <lisakrobb@...>Date: Sat, 20 Mar 2010 02:23:10 -0000< >Subject: ( ) Just entering the diagnostic process Hi there,I'm and I'm new here. I have a 6 1/2 year old daughter who we are just in the beginning of the diagnostic process. We believe she has Asperger's Syndrome. At school, they see nothing wrong- she's just " a bit different " , but at home it's a whole different scenario. She is able to hold things together and quell her anxiety at school, and then she just explodes when she gets home. She is super smart, but socially has a lot of difficulty with knowing when people are annoyed, or how to join a group, how to take turns having the idea for the group, how to interact verbally and so on. She has horrible meltdowns at home, that have gotten shorter with the therapy we've tried for her, but even that does not seem to be enough. When her therapist finally saw the meltdowns we were describing, she was just dumbfounded and really at a loss as to how to help us. So we have her on the waiting list for assessment at a reputable place that deals with ASD. As a mom, it is heartbreaking to watch her try to interact and make friends and have it all go wrong. I try to be there to coach her through situations in the neighborhood when I can. For the families that have known her since she was born, this is just normal for her and my presence doesn't negatively impact the situation, but as she is getting older- first grade now- it is weird to her new friends if I intervene or am too close to their games or whatever. So I try to keep my distance. I still have a close eye on the interactions and try to walk her through difficulties after the friend has gone home, but sometimes it is too late and we don't really see that friend around too much anymore. To top things off we are almost 100% sure my husband has Asperger's as well. He is also at the start of the diagnostic process. I took a course on AS with my daughter in mind, but ended up seeing my husband jump off the pages of the texts and out of the videos we watched. He is all for a diagnosis, as he's always felt different and life has at times been a real struggle for him socially and emotionally. However this also leaves me in a bit of a weird place because he doesn't really get where I am coming from or understand my whole view of the situation. I am sorry to ramble on like this, but I'm feeling a bit overwhelmed and would welcome any advice, suggestions, feedback, or support from anyone who has been where I am now, as either a parent or a spouse. It's been quite difficult to find others who have been in my situation since I am new to all this. Thanks!

[Guest guest]

Hi --

No answers, but I do know what you're talking about! I have 3 kids

w/Aspergers (ages 6, 14,and 19) -- and 3 more who are quirky, but no diagnosis.

I am also married to an undiagnosed Aspie.

It can feel overwhelming. I tried not to stress (for YEARS!), but ultimately, it

all came back to haunt me -- in other words, our home is a hotbed of Aspie

culture, and I cannot ignore it.

Some days, I feel despondent. Most days, it's okay. I do feel very lonely at

times, because we are like a huge family of people who want/need a significant

amount of alone time, and I had wanted a big, interactive family! But

seriously, I think our family does better because of the sheer numbers. They are

forced to interact and to learn how to treat others. I do know a lot of people;

I make friends easily. But we do not socialize out with groups of people often,

nor do hubby and I have " couple friends. " I have one very dear friend whose

family comes over fairly often, and that's been really nice. She has 2 kids, the

ages of 2 of mine. She just recently learned of our diagnoses, and didn't know

anything was different. She thinks our family is wonderful and amazing. And

it is.

For many years, I thought we had " big family " issues. Now I realize it's more.

I've met a lot of other big families, and they don't have AS -- and it's

different! Their households are much noisier, for one thing. I do love that

while there are a lot of us, our home is fairly quiet and organized. We are all

big readers, and we crave quiet time. Of course, my younger ones can be noisy.

My 6 year old has NO volume control right now....

Just wanted to wish you well. Take heart. One thing that helps me is remembering

my family members are the same people I've always known and loved, even w/new

diagnoses. Best wishes!

Peace,

JoAnn in CO

>>>>>>>>>> I'm and I'm new here. I have a 6 1/2 year old daughter who we

are just in the beginning of the diagnostic process. We believe she has

Asperger's Syndrome. <<<<<<<<<<<<<

[Guest guest]

My daughter is 12. We have a very similar family situations.

And my daughter had horrible outbursts after school.

Oh wow they were awful. She was so anxious and would

hyperfocus on wanting to buy things for her collections as

a way to cope.

It was a very long process to get her stable. First we were

reluctant to treat her anxiety and so were the doctors.

Professionals feel too many kids are over medicated.

OT/PT At age 5 - 7 we tried OT and PT it helped her physical development but did

nothing for her overload meltdowns. We tried play therapy

for a few years until she refused to go. We had a 504 plan in

place but we didn't get any services. This was a waste of time.

Diagnosis: At age 9 we had a neuropsyclogical

evaluation done at age 9 (I am not sure how helpful it is before

that age) and many AS learning deficits were found in processing speed and

working memory and attention and transitioning. So we had

concrete data and a diagnosis of AS to advocate to get her an IEP.

It took many professionals to help us get her classified.

It took a few years to get the services she need in place.

Coping with Peers: Between age 9-now her female peers were very harsh to her and

she was very upset. On the positive I structured

fun mother daughter movie nights and helped her

with her hobby in animals. I filled a void.

We do things that typical girls do such as go to the mall and go to the movies.

I take her shopping. I do alot of prompting

with peers as you do too. Typical kids will eventually

turn away but you can look at younger peers for your

child to play with. There are also special needs camps

(very expensive in our area) and extended school year

(if services are in place). In the summer there are

some camps that your daughter will like. Ones that

have no transitions are best. One where the teacher

facilitates like a dance class, art class, single topic

camps so that there is not too much to process.

She won't necessarily make friends (that I know you want

for her) but she will be doing things that her peers

are doing. This is important too that we help them

have experiences similar to peers. I think this is important

even if they can't socialize in a dynamic way as children.

Behavioral Training: When my daughter was 11 I got training in behavioral

management from Yale Parent and Child Clinic in CT. This was critical training I

highly recommend it. AS kids

can be very ridgid you need to shape behaviors in a

gradual way. Yale will teach you how to do that and they will

teach the school too. You will have a behaviorist and

advocate in one.

http://www.yale.edu/childconductclinic/index.html

Medication: At age 11, it was clear that I was not escalating her

in any way (Yale trained me). And her anxiety from school

had totally escalated out of control so we had her treated

with zoloft in a very low dose and

increased it very very slowly to make sure there were no adverse

affects. Our psychiatrist has a policy not to keep kids on medication any longer

than they need it. So all the services and treatments

we sought were necessary to prove we have tried to reduce

anxiety in non medication ways. Our daughter is in a small

special needs school. She really has severe issues with

too much stimulation but she does have NLD which is a set of

learning deficits many AS kids do have.

Beyond teaching good manners: Now at age 12, that other issues addressed we can

focus on dynamic social skills. We can go beyond

teaching her good manners and learn how to teach

someone autistic to have fun socializing in small steps.

We have started RDI training. RDI has excellent training

program. But if your child is having so many behavioral

problems that needs to be treated first. You can't address

to many things at once.

I hope I have been some help. My husband is very similar to yours

you will have to set the direction and help keep the

family moving in a healthy direction.

email if you like,

Pam

>

> Hi there,

> I'm and I'm new here. I have a 6 1/2 year old daughter who we are just

in the beginning of the diagnostic process. We believe she has Asperger's

Syndrome. At school, they see nothing wrong- she's just " a bit different " , but

at home it's a whole different scenario. She is able to hold things together

and quell her anxiety at school, and then she just explodes when she gets home.

She is super smart, but socially has a lot of difficulty with knowing when

people are annoyed, or how to join a group, how to take turns having the idea

for the group, how to interact verbally and so on. She has horrible meltdowns

at home, that have gotten shorter with the therapy we've tried for her, but even

that does not seem to be enough. When her therapist finally saw the meltdowns

we were describing, she was just dumbfounded and really at a loss as to how to

help us. So we have her on the waiting list for assessment at a reputable place

that deals with ASD.

> As a mom, it is heartbreaking to watch her try to interact and make friends

and have it all go wrong. I try to be there to coach her through situations in

the neighborhood when I can. For the families that have known her since she was

born, this is just normal for her and my presence doesn't negatively impact the

situation, but as she is getting older- first grade now- it is weird to her new

friends if I intervene or am too close to their games or whatever. So I try to

keep my distance. I still have a close eye on the interactions and try to walk

her through difficulties after the friend has gone home, but sometimes it is too

late and we don't really see that friend around too much anymore.

> To top things off we are almost 100% sure my husband has Asperger's as well.

He is also at the start of the diagnostic process. I took a course on AS with

my daughter in mind, but ended up seeing my husband jump off the pages of the

texts and out of the videos we watched. He is all for a diagnosis, as he's

always felt different and life has at times been a real struggle for him

socially and emotionally. However this also leaves me in a bit of a weird place

because he doesn't really get where I am coming from or understand my whole view

of the situation.

> I am sorry to ramble on like this, but I'm feeling a bit overwhelmed and would

welcome any advice, suggestions, feedback, or support from anyone who has been

where I am now, as either a parent or a spouse. It's been quite difficult to

find others who have been in my situation since I am new to all this.

> Thanks!

>

>

[Guest guest]

Thanks for your advice. We actually have decided to seek a new therapist. I

really like the one we were seeing as a person, and if my NT son was having

issues, I would take him to her. However, she really doesn't seem to grasp AS at

all, so we are now on a waiting list at Fraser Center which deals almost

exclusively with kids dealing with AS. My husband and I go to see them on 3/29

to do what they call pre-assessments for my daughter. I love that they want to

see us without her because she gets very agitated if she thinks we see something

" wrong " with her. I'm optimistic that we are on the right path. Thanks also

for the advice about the coaching. I know other kids think this is so weird,

but it's nice to know there are other parents who see the necessity for this in

our situation.

>

> We have been there too. Hopefully now that the therapist has seen your

daughters meltdowns, she can recommend her to a psychiatrist who can evaluate

her for medications for her anxiety. As far as her social situation, you are

doing the right things by coaching her. Keep trying to find a nice family with

understanding that you can explain her issues. Even if they just play once in a

while, it will be good for her.

>

> Suzanne

> Sent on the Sprint® Now Network from my BlackBerry®

>

> ( ) Just entering the diagnostic process

>

> Hi there,

> I'm and I'm new here. I have a 6 1/2 year old daughter who we are just

in the beginning of the diagnostic process. We believe she has Asperger's

Syndrome. At school, they see nothing wrong- she's just " a bit different " , but

at home it's a whole different scenario. She is able to hold things together

and quell her anxiety at school, and then she just explodes when she gets home.

She is super smart, but socially has a lot of difficulty with knowing when

people are annoyed, or how to join a group, how to take turns having the idea

for the group, how to interact verbally and so on. She has horrible meltdowns

at home, that have gotten shorter with the therapy we've tried for her, but even

that does not seem to be enough. When her therapist finally saw the meltdowns

we were describing, she was just dumbfounded and really at a loss as to how to

help us. So we have her on the waiting list for assessment at a reputable place

that deals with ASD.

> As a mom, it is heartbreaking to watch her try to interact and make friends

and have it all go wrong. I try to be there to coach her through situations in

the neighborhood when I can. For the families that have known her since she was

born, this is just normal for her and my presence doesn't negatively impact the

situation, but as she is getting older- first grade now- it is weird to her new

friends if I intervene or am too close to their games or whatever. So I try to

keep my distance. I still have a close eye on the interactions and try to walk

her through difficulties after the friend has gone home, but sometimes it is too

late and we don't really see that friend around too much anymore.

> To top things off we are almost 100% sure my husband has Asperger's as well.

He is also at the start of the diagnostic process. I took a course on AS with

my daughter in mind, but ended up seeing my husband jump off the pages of the

texts and out of the videos we watched. He is all for a diagnosis, as he's

always felt different and life has at times been a real struggle for him

socially and emotionally. However this also leaves me in a bit of a weird place

because he doesn't really get where I am coming from or understand my whole view

of the situation.

> I am sorry to ramble on like this, but I'm feeling a bit overwhelmed and would

welcome any advice, suggestions, feedback, or support from anyone who has been

where I am now, as either a parent or a spouse. It's been quite difficult to

find others who have been in my situation since I am new to all this.

> Thanks!

>

>

[Guest guest]

Thanks so much for your response. It really helps to know there are other

families like ours out there.

Our house is pretty loud right now as I have a nearly 5 year old as well as my 6

1/2 year old, not to mention the " herd " of pets who live with us. My husband

has some serious noise sensitivities that are a part of the AS. This has made

it really challenging for him to deal with the bickering between the kids or

even just the happy noise of them playing.

My son has no hint of AS, he's not even quirky. He just seems like a typical 5

year old, and he does amazingly well at coping with the thinking of his sister

and dad. I suppose he knows no different, but I am continually amazed by him.

Do you ever feel like you have to " referee " or be the voice of reason that

bridges the gap between your aspie and non-aspie family members? I feel like

that a lot, and most of the time I am fine with it, but other times I am just

exhausted and overwhelmed and have a lot of difficulty with that part of things.

I suppose maybe it will get easier the more information we get and the further

we get down this road. I hope so anyway.

I try to get out and see my friends as often as I can, which is not too often-

maybe once a month or so. My daughter just panics if I am going to be gone. I

usually try to go anyway, but there have been times when it is obvious she just

can't handle it and I end up cancelling. I do work and attend classes a couple

of nights a week and on Saturdays. That really helps because I can tell my

daughter that I HAVE to go because it's my job. I hope this gets easier as she

gets older. Has it gotten easier in your situation?

I'm so glad I found this group. I have searched all over the web and most sites

I found deal with parenting issues in a less direct way. The responses I've

gotten so far have been very reassuring to say the least.

Thanks!

>

> Hi --

>

> No answers, but I do know what you're talking about! I have 3 kids

w/Aspergers (ages 6, 14,and 19) -- and 3 more who are quirky, but no diagnosis.

>

> I am also married to an undiagnosed Aspie.

>

> It can feel overwhelming. I tried not to stress (for YEARS!), but ultimately,

it all came back to haunt me -- in other words, our home is a hotbed of Aspie

culture, and I cannot ignore it.

>

> Some days, I feel despondent. Most days, it's okay. I do feel very lonely at

times, because we are like a huge family of people who want/need a significant

amount of alone time, and I had wanted a big, interactive family! But

seriously, I think our family does better because of the sheer numbers. They are

forced to interact and to learn how to treat others. I do know a lot of people;

I make friends easily. But we do not socialize out with groups of people often,

nor do hubby and I have " couple friends. " I have one very dear friend whose

family comes over fairly often, and that's been really nice. She has 2 kids, the

ages of 2 of mine. She just recently learned of our diagnoses, and didn't know

anything was different. She thinks our family is wonderful and amazing. And

it is.

>

> For many years, I thought we had " big family " issues. Now I realize it's more.

I've met a lot of other big families, and they don't have AS -- and it's

different! Their households are much noisier, for one thing. I do love that

while there are a lot of us, our home is fairly quiet and organized. We are all

big readers, and we crave quiet time. Of course, my younger ones can be noisy.

My 6 year old has NO volume control right now....

>

> Just wanted to wish you well. Take heart. One thing that helps me is

remembering my family members are the same people I've always known and loved,

even w/new diagnoses. Best wishes!

> Peace,

> JoAnn in CO

>

>

> >>>>>>>>>> I'm and I'm new here. I have a 6 1/2 year old daughter who we

are just in the beginning of the diagnostic process. We believe she has

Asperger's Syndrome. <<<<<<<<<<<<<

>

[Guest guest]

Hi Pam,

Thank you so much for your reply. Your situation sounds so similar to mine.

And thank you for sharing your journey. It's helpful to have some sort of an

idea what might be headed our way.

We actually have my daughter on a waiting list for an Asperger's diagnostic

evaluation. I'm not exactly sure if this is a neuropsych eval or not. We live

in Minnesota and after 2 months of misdirection from our insurance company, I

finally discovered that Fraser Center in Minneapolis is in our network. They

have a phenomenal reputation for their work with both children and adults on the

spectrum. Both my daughter and my husband are now on waiting lists for

evaluations.

In my daughter's case they will be meeting with my husband and I a week from

Monday to do what they call pre-assessments where we go without Ani for the

first visit to discuss what we are seeing. I'm so grateful that we go alone,

because she just falls apart if she thinks we see anything " wrong " with her.

Then it's a series of appointments that I'm not sure of the details yet.

They'll fill us in on the 29th. The point is to connect us with services that

will help Ani while she is on the 6-8 month waiting list for an eval. I also

have her on the cancellation list and plan to follow up frequently to see if she

is moving up the list because I would really like some answers before school

starts in the fall next year.

I like your suggestions regarding the peer thing. That whole area of her life

just makes me sad. We have had her in swimming lessons and she is taking ice

skating lessons right now. The neighbor girl really wants her to do soccer with

her this summer, and my daughter really wants to, but I'm reluctant to put her

into a team activity at this point. Her other lessons are with other kids, but

they are largely individualized which allows her to experience success without

the pressures of socializing. I'm not sure she is ready for the team type of

atmosphere.

Is NLD the Non-specified learning disorders? I was a classroom teacher for 10

years before my kids were born and still work as a tutor, but the labels and

acronyms change so fast I can't really keep up with them.

The behavioral therapy is what I really want for her as soon as possible. I'd

like this for my husband too, and I'd like to be a big part of this so I know

what I can and cannot expect from this whole process. And also to help her

younger brother cope with his unique family as he gets older. I'm really hopeful

that Fraser Center can provide this for us.

What is RDI? I've seen this before and I don't know what it stands for or what

it involves. Is it a social skills training type program? My daughter may not

be ready for this, but it may really help my husband.

Also, I'm curious how has your daughter's behavior been in school over the

years? At this point, and possibly because Ani is so young, they don't see

anything. In fact her music teacher gave her top marks in social skills?! I

figure this has to be because Ani sits there and doesn't cause trouble. I can't

imagine there's much room for socializing in a 20 minute music class. Even

though there aren't issues at school yet, we definitely see them in interactions

with friends who come over or with other kids in the neighborhood, and of course

with her brother and us.

Thank you. Thank you. Thank you so much for your response. I have been all

over the web and have had real trouble finding a place to connect with other

parents about this type of situation. I would love to stay in touch with you

and email if that's still okay with you.

> >

> > Hi there,

> > I'm and I'm new here. I have a 6 1/2 year old daughter who we are just

in the beginning of the diagnostic process. We believe she has Asperger's

Syndrome. At school, they see nothing wrong- she's just " a bit different " , but

at home it's a whole different scenario. She is able to hold things together

and quell her anxiety at school, and then she just explodes when she gets home.

She is super smart, but socially has a lot of difficulty with knowing when

people are annoyed, or how to join a group, how to take turns having the idea

for the group, how to interact verbally and so on. She has horrible meltdowns

at home, that have gotten shorter with the therapy we've tried for her, but even

that does not seem to be enough. When her therapist finally saw the meltdowns

we were describing, she was just dumbfounded and really at a loss as to how to

help us. So we have her on the waiting list for assessment at a reputable place

that deals with ASD.

> > As a mom, it is heartbreaking to watch her try to interact and make friends

and have it all go wrong. I try to be there to coach her through situations in

the neighborhood when I can. For the families that have known her since she was

born, this is just normal for her and my presence doesn't negatively impact the

situation, but as she is getting older- first grade now- it is weird to her new

friends if I intervene or am too close to their games or whatever. So I try to

keep my distance. I still have a close eye on the interactions and try to walk

her through difficulties after the friend has gone home, but sometimes it is too

late and we don't really see that friend around too much anymore.

> > To top things off we are almost 100% sure my husband has Asperger's as well.

He is also at the start of the diagnostic process. I took a course on AS with

my daughter in mind, but ended up seeing my husband jump off the pages of the

texts and out of the videos we watched. He is all for a diagnosis, as he's

always felt different and life has at times been a real struggle for him

socially and emotionally. However this also leaves me in a bit of a weird place

because he doesn't really get where I am coming from or understand my whole view

of the situation.

> > I am sorry to ramble on like this, but I'm feeling a bit overwhelmed and

would welcome any advice, suggestions, feedback, or support from anyone who has

been where I am now, as either a parent or a spouse. It's been quite difficult

to find others who have been in my situation since I am new to all this.

> > Thanks!

> >

> >

>

[Guest guest]

YES! YES! I am used to it now, but OH, it can be exhausting.

And I am glad you do get out when you can. I always know when it's been too

long w/out a break, because I start crying (!) or feeling like I'm gonna

explode. Yup. Because we homeschool, I am either home w/the kids or running

all over town to activities/appointments. And after too many days in a row of

this with NO break for me, I tell hubby that I NEED to get out for a bit. My

favorite thing is to get to the bookstore for an hour or so, a yummy coffee or

hot chocolate, and I feel a LOT better.

I am NEVER home alone. NEVER. Hubby has never taken the kids out much, though

he's a GREAT dad at home. He lets me get out, since he's the homebody. I do

think it'd be fun to be home alone " someday. "

JoAnn

>

>

> Do you ever feel like you have to " referee " or be the voice of reason that

bridges the gap between your aspie and non-aspie family members? I feel like

that a lot, and most of the time I am fine with it, but other times I am just

exhausted and overwhelmed and have a lot of difficulty with that part of things.

> I try to get out and see my friends as often as I can, which is not too often-

maybe once a month or so. My daughter just panics if I am going to be gone. I

usually try to go anyway, but there have been times when it is obvious she just

can't handle it and I end up cancelling.

[Guest guest]

, Are you living my life?? NO really! This sounds so much like us and I take a day a week to get out to get "away" from Aspergers. Both my husband and my daughter as well and my poor son has so much frustration over it all. I have to snuggle him a lot more and just love on him as much as I can because my daughter takes up so much of my time that I never want him to feel second best. Its something I worry about a lot. On Mar 21, 2010, at 11:21 AM, lisakrobb wrote:

Thanks so much for your response. It really helps to know there are other families like ours out there.

Our house is pretty loud right now as I have a nearly 5 year old as well as my 6 1/2 year old, not to mention the "herd" of pets who live with us. My husband has some serious noise sensitivities that are a part of the AS. This has made it really challenging for him to deal with the bickering between the kids or even just the happy noise of them playing.

My son has no hint of AS, he's not even quirky. He just seems like a typical 5 year old, and he does amazingly well at coping with the thinking of his sister and dad. I suppose he knows no different, but I am continually amazed by him.

Do you ever feel like you have to "referee" or be the voice of reason that bridges the gap between your aspie and non-aspie family members? I feel like that a lot, and most of the time I am fine with it, but other times I am just exhausted and overwhelmed and have a lot of difficulty with that part of things. I suppose maybe it will get easier the more information we get and the further we get down this road. I hope so anyway.

I try to get out and see my friends as often as I can, which is not too often- maybe once a month or so. My daughter just panics if I am going to be gone. I usually try to go anyway, but there have been times when it is obvious she just can't handle it and I end up cancelling. I do work and attend classes a couple of nights a week and on Saturdays. That really helps because I can tell my daughter that I HAVE to go because it's my job. I hope this gets easier as she gets older. Has it gotten easier in your situation?

I'm so glad I found this group. I have searched all over the web and most sites I found deal with parenting issues in a less direct way. The responses I've gotten so far have been very reassuring to say the least.

Thanks!

>

> Hi --

>

> No answers, but I do know what you're talking about! I have 3 kids w/Aspergers (ages 6, 14,and 19) -- and 3 more who are quirky, but no diagnosis.

>

> I am also married to an undiagnosed Aspie.

>

> It can feel overwhelming. I tried not to stress (for YEARS!), but ultimately, it all came back to haunt me -- in other words, our home is a hotbed of Aspie culture, and I cannot ignore it.

>

> Some days, I feel despondent. Most days, it's okay. I do feel very lonely at times, because we are like a huge family of people who want/need a significant amount of alone time, and I had wanted a big, interactive family! But seriously, I think our family does better because of the sheer numbers. They are forced to interact and to learn how to treat others. I do know a lot of people; I make friends easily. But we do not socialize out with groups of people often, nor do hubby and I have "couple friends." I have one very dear friend whose family comes over fairly often, and that's been really nice. She has 2 kids, the ages of 2 of mine. She just recently learned of our diagnoses, and didn't know anything was different. She thinks our family is wonderful and amazing. And it is.

>

> For many years, I thought we had "big family" issues. Now I realize it's more. I've met a lot of other big families, and they don't have AS -- and it's different! Their households are much noisier, for one thing. I do love that while there are a lot of us, our home is fairly quiet and organized. We are all big readers, and we crave quiet time. Of course, my younger ones can be noisy. My 6 year old has NO volume control right now....

>

> Just wanted to wish you well. Take heart. One thing that helps me is remembering my family members are the same people I've always known and loved, even w/new diagnoses. Best wishes!

> Peace,

> JoAnn in CO

>

>

> >>>>>>>>>> I'm and I'm new here. I have a 6 1/2 year old daughter who we are just in the beginning of the diagnostic process. We believe she has Asperger's Syndrome. <<<<<<<<<<<<<

>

“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs

[Guest guest]

JoAnn, Glad I am not the only one that feels that way. I homeschool also and I NEED my night out every week. I also go off on retreats 2-3 times a year. I have to get away from it or I'll go insane! glad you get your needed time away!! On Mar 21, 2010, at 7:51 PM, JPBarham wrote:

YES! YES! I am used to it now, but OH, it can be exhausting.

And I am glad you do get out when you can. I always know when it's been too long w/out a break, because I start crying (!) or feeling like I'm gonna explode. Yup. Because we homeschool, I am either home w/the kids or running all over town to activities/appointments. And after too many days in a row of this with NO break for me, I tell hubby that I NEED to get out for a bit. My favorite thing is to get to the bookstore for an hour or so, a yummy coffee or hot chocolate, and I feel a LOT better.

I am NEVER home alone. NEVER. Hubby has never taken the kids out much, though he's a GREAT dad at home. He lets me get out, since he's the homebody. I do think it'd be fun to be home alone "someday."

JoAnn

>

>

> Do you ever feel like you have to "referee" or be the voice of reason that bridges the gap between your aspie and non-aspie family members? I feel like that a lot, and most of the time I am fine with it, but other times I am just exhausted and overwhelmed and have a lot of difficulty with that part of things.

> I try to get out and see my friends as often as I can, which is not too often- maybe once a month or so. My daughter just panics if I am going to be gone. I usually try to go anyway, but there have been times when it is obvious she just can't handle it and I end up cancelling.

“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.” - Steve Jobs

[Guest guest]

I home school also. I have an 18 yod that graduated last year. So I just have

my 11 yod (who also has OCD) to school. My 18 yod works, but she does sometime

watch Nikkie while I do something or with my husband. We try to get out some

together. It really frustrates him when we can't go b/c she is having a bad

day. He sometimes gets depressed for a few days. It has really taken a toll on

our family. Sometimes I have to remind them that she can't help it. It is like

getting mad at someone who can't walk b/c they have a broken leg. But when it

is more behavior and they look fine you can't see it. She has had ocd since she

was 4, just recently been diagnosed with asperger's. Although she has had it

for sometime now I can see.

I am always having to remind my husband and 18 yod to give Nikkie some more

slack. they can be so tough on her sometimes. At least now with the asperger's

diagnoses I can see now that she really can't understand some things. She's not

just trying to be difficult.

nat

> > >

> > >

> > > Do you ever feel like you have to " referee " or be the voice of reason that

bridges the gap between your aspie and non-aspie family members? I feel like

that a lot, and most of the time I am fine with it, but other times I am just

exhausted and overwhelmed and have a lot of difficulty with that part of things.

> >

> > > I try to get out and see my friends as often as I can, which is not too

often- maybe once a month or so. My daughter just panics if I am going to be

gone. I usually try to go anyway, but there have been times when it is obvious

she just can't handle it and I end up cancelling.

> >

> >

>

>

>

> " Here's to the crazy ones, the misfits, the rebels, the troublemakers, the

round pegs in the square holes... the ones who see things differently -- they're

not fond of rules... You can quote them, disagree with them, glorify or vilify

them, but the only thing you can't do is ignore them because they change

things... they push the human race forward, and while some may see them as the

crazy ones, we see genius, because the ones who are crazy enough to think that

they can change the world, are the ones who do. " - Steve Jobs

>

[Guest guest]

I definitely feel this way, too. Lately, I can’t even leave the

ROOM without following me like a puppy dog. I never get a moment to

myself. That being said, there are times I leave, and yes, often cries,

gets upset, yells at my hubby, says he misses me, etc… but he survives. He HAS

to. I cannot be there for him 100% of the time. This has been a HUGE struggle

for us since he was a very small boy. But it’s getting better. Sometimes, you

just HAVE to get out – for the sanity of yourself. I also think it’s important

to take your non-aspie kids out, away from the aspie kids, to have some

RELAXING fun – this can be quite therapeutic for BOTH of you!

=)

Who feels the mental exhaustion right along with you !!!

From:

[mailto: ] On

Behalf Of JPBarham

Sent: Monday, March 22, 2010 12:21 AM

Subject: Re: ( ) Just entering the diagnostic process

YES! YES! I am used to it now, but OH, it

can be exhausting.

And I am glad you do get out when you can. I always know when it's been too

long w/out a break, because I start crying (!) or feeling like I'm gonna

explode. Yup. Because we homeschool, I am either home w/the kids or running

all over town to activities/appointments. And after too many days in a row of

this with NO break for me, I tell hubby that I NEED to get out for a bit. My

favorite thing is to get to the bookstore for an hour or so, a yummy coffee or

hot chocolate, and I feel a LOT better.

I am NEVER home alone. NEVER. Hubby has never taken the kids out much, though

he's a GREAT dad at home. He lets me get out, since he's the homebody. I do

think it'd be fun to be home alone " someday. "

JoAnn

>

>

> Do you ever feel like you have to " referee " or be the voice of

reason that bridges the gap between your aspie and non-aspie family members? I

feel like that a lot, and most of the time I am fine with it, but other times I

am just exhausted and overwhelmed and have a lot of difficulty with that part

of things.

> I try to get out and see my friends as often as I can, which is not too

often- maybe once a month or so. My daughter just panics if I am going to be

gone. I usually try to go anyway, but there have been times when it is obvious

she just can't handle it and I end up cancelling.

[Guest guest]

Good luck with your pre-assesment, I think it will get things moving in the right direction for you. You were doing the coaching naturally because it made sense. But that is something our therapist encouraged us to do with our son to improve his interaction with other kids. Hopefully someday we can stop doing that, but for now it helps to remind him to let the other kids have a turn talking, or that we're just playing for fun, it's OK if he doesn't win - things like that. I hate to hover too, but it's better than him having a meltdown that could have been headed off.

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

Suzanne

suzmarkwood@...

From: lisakrobb <lisakrobb@...>Subject: ( ) Re: Just entering the diagnostic process Date: Sunday, March 21, 2010, 11:08 AM

Thanks for your advice. We actually have decided to seek a new therapist. I really like the one we were seeing as a person, and if my NT son was having issues, I would take him to her. However, she really doesn't seem to grasp AS at all, so we are now on a waiting list at Fraser Center which deals almost exclusively with kids dealing with AS. My husband and I go to see them on 3/29 to do what they call pre-assessments for my daughter. I love that they want to see us without her because she gets very agitated if she thinks we see something "wrong" with her. I'm optimistic that we are on the right path. Thanks also for the advice about the coaching. I know other kids think this is so weird, but it's nice to know there are other parents who see the necessity for this in our situation.>> We have been there too. Hopefully now that the therapist has seen your daughters meltdowns, she can recommend her to a psychiatrist who can evaluate her for medications for her anxiety. As far as her social situation, you are doing the right things by coaching her. Keep trying to find a nice family with understanding that you can explain her issues. Even if they just play once in a while, it will be good for her.> > Suzanne> Sent on the Sprint® Now Network from my BlackBerry®> > ( ) Just entering the diagnostic process> > Hi there,> I'm and I'm new here. I have a 6 1/2 year old daughter who we are just in the beginning of the diagnostic process. We believe she has Asperger's Syndrome. At school, they see nothing wrong- she's just "a bit different", but at home it's a whole different scenario. She is able to hold things together and quell her anxiety at school, and then she just explodes when she gets home. She is super smart, but socially has a lot of difficulty with knowing when people are annoyed, or how to join a group, how to take turns having the idea for the group, how to interact verbally and so on. She has horrible meltdowns at home, that have gotten shorter with the therapy we've tried for her, but even that does not seem to be enough. When her therapist finally saw

the meltdowns we were describing, she was just dumbfounded and really at a loss as to how to help us. So we have her on the waiting list for assessment at a reputable place that deals with ASD. > As a mom, it is heartbreaking to watch her try to interact and make friends and have it all go wrong. I try to be there to coach her through situations in the neighborhood when I can. For the families that have known her since she was born, this is just normal for her and my presence doesn't negatively impact the situation, but as she is getting older- first grade now- it is weird to her new friends if I intervene or am too close to their games or whatever. So I try to keep my distance. I still have a close eye on the interactions and try to walk her through difficulties after the friend has gone home, but sometimes it is too late and we don't really see that friend around too much anymore. > To top things off we are almost 100% sure my husband

has Asperger's as well. He is also at the start of the diagnostic process. I took a course on AS with my daughter in mind, but ended up seeing my husband jump off the pages of the texts and out of the videos we watched. He is all for a diagnosis, as he's always felt different and life has at times been a real struggle for him socially and emotionally. However this also leaves me in a bit of a weird place because he doesn't really get where I am coming from or understand my whole view of the situation. > I am sorry to ramble on like this, but I'm feeling a bit overwhelmed and would welcome any advice, suggestions, feedback, or support from anyone who has been where I am now, as either a parent or a spouse. It's been quite difficult to find others who have been in my situation since I am new to all this. > Thanks!> >

[Guest guest]

Unless your daughter is a very obvious case it may be hard

to get a DX of AS at a young age. When my daughter was in first grade

the pediatric nuerologist said she had OCD. Our therapist at the

time was convinced it was anxiety too. I knew she was not

just anxious. I knew it. At age 9 seems to be an age where

social development becomes more socially interactive and

less parallel play and then the social issues are more obvious.

Even so I had to make a case for AS by tape recording my

daughter with peers over a period of a few months. I brought

that to the neuropyschologist. Like a lot of AS kids my

daughter can interact very well with adults and this can misled

teachers and therapists alike.

My daughter too can't cope with seeing doctors or therapists.

In school my daughter couldn't cope with being pulled

out of classes because she felt this meant that something

was wrong with her. Alot of AS kids don't feel like this,

they like getting pulled out. But my daughter is not one of

them. My daughter (12 now) also falls apart to go to the

pyschiatrist. And her psychiatrist lets her just talk about

her pets and read books to the doctor. So it could not be

more compassionate. But my daughter senses that this is not

a typical doctor and we must think she is crazy. I tell her the truth,

you are late to school too much we need a doctor that says

it is OK.

To cope with the doctor visits, Yale Univeristy helps me

shape cooperation. We set up rewards for seeing doctors.

Some of the rewards depending on the test or procedure

may be a pet hamster, going to a place to eat she likes

for a big sundae, getting a gift certificate for the mall

or going to the mall. I try to give the rewards on the

same day. It is an added expensive but we need to make the

medical interventions positive.

I understand your reservation about the soccer group. Here

is what I would say, leave the kids wanting more of your daughter.

I left my daughter in girl scouts too long. She was not coping

well in the group. Even with me attending and helping facilitate

it was too much. One of the girls had no patience for my daughter

and turned the rest of the girls against my daughter. The

main issue was my daughter was fixed that the girls should

include her at recess since she was a girl scout. They

didn't want to at recess and the girls mom's and the school

all said you can't make kids play with somone they don't

want too. My daughter instead of retreating had a mini

meltdown and then the girls really didn't want her in the

group. This incident happened in 4th grade. I really

couldn't connect her with any other girls. This was her

group the arts and crafts girls not the sporty ones.

We would have been better off seeing girls from school 1:1.

She couldn't understand that girls could be cooperative in

one group facilated and not at recess. Many AS kids

do have better experiences we are just one that didn't.

She is in a special needs school and still has not connected.

This is a good web site at Mass General about general information

http://www2.massgeneral.org/schoolpsychiatry/info_autism.asp

This is a good description of the type of learning problems

some AS kids can have. Not all kids with AS have NLD.

Many kids with genetic disorders have these types of NLD

learning issues. It is not a surprise you may not

have heard of NLD, it is a term I think used within

the research community of rare disorders.

It stands for non verbal learning disorder. It is falling

out of use I think but it explains the type of issues

our kids may have.

http://www.nldline.com/childdream.htm#2

There are so many people doing research in the area of

social skill development yet no evidence based program.

Carol Grays Social story formats have been in use for a long time.

Michele Winner is working with the social story folks and give

lots of training on the west coast mostly. She has DVD's

available. Dr. Stanley Greenspan has Floortime.

Dr. Gutstein has RDI Relationship Intervention Therapy.

http://www.rdiconnect.com/pages/Our-Programs.aspx

I would just some up the training of RDI and Floortime

(I am generalizing way too much) as spend at least two 20

minutes sessions with your child each day drawing them

out of there isolation. Slowly and systematically

make socializing fun and dynamic (changing). Don't

enable your child to retreat or be ridgidly fixed.

Be playful and help them cope slowly with things changing.

I did find an RDI therapist that is close to my husband's

work and they agreed to just do the training portion

(not include our daughter and all the video taping of our

interactions). RDI can be too complicated to participate in

but we found someone that is willing to take it slow. The RDI

training tapes are on line and so far seem very good at explaining the very

basics.

The teachers at school always glossed over my daughter's social skill

issues. Don't look to them for input. Ask for a functional

beahvioral assessment (FBA) at the school of her social behavior

when you get the DX of AS or if the teachers complain about her

behavior in any way ask for a FBA. My daughter's

issues at school were often about her transitioning too slow.

When the class got ready at the end of the day in kindergarten

she was sitting and not moving (to much stimulation).

Or if they walked in the hall she would stop and look at

the bulletin boards. Or when they started having lunch in the

lunch room she would sometimes panic and go to the bathroom.

I am glad to help in anyway I can. You can email if you

like.

Pam

[Guest guest]

Our house is noisy (I have a 1, 3, and 5 year old in addition to my

hfa and teen) so not sure why sge hasn't gotten used to it more thab

the average hfa but she does ok at home but in the car the noise can

bother her.

And yes, always a ref both ways, between hfa and nt but also to

protect nt from hfa

On 3/21/10, lisakrobb <lisakrobb@...> wrote:

> Thanks so much for your response. It really helps to know there are other

> families like ours out there.

> Our house is pretty loud right now as I have a nearly 5 year old as well as

> my 6 1/2 year old, not to mention the " herd " of pets who live with us. My

> husband has some serious noise sensitivities that are a part of the AS.

> This has made it really challenging for him to deal with the bickering

> between the kids or even just the happy noise of them playing.

> My son has no hint of AS, he's not even quirky. He just seems like a

> typical 5 year old, and he does amazingly well at coping with the thinking

> of his sister and dad. I suppose he knows no different, but I am

> continually amazed by him.

> Do you ever feel like you have to " referee " or be the voice of reason that

> bridges the gap between your aspie and non-aspie family members? I feel

> like that a lot, and most of the time I am fine with it, but other times I

> am just exhausted and overwhelmed and have a lot of difficulty with that

> part of things. I suppose maybe it will get easier the more information we

> get and the further we get down this road. I hope so anyway.

> I try to get out and see my friends as often as I can, which is not too

> often- maybe once a month or so. My daughter just panics if I am going to

> be gone. I usually try to go anyway, but there have been times when it is

> obvious she just can't handle it and I end up cancelling. I do work and

> attend classes a couple of nights a week and on Saturdays. That really

> helps because I can tell my daughter that I HAVE to go because it's my job.

> I hope this gets easier as she gets older. Has it gotten easier in your

> situation?

> I'm so glad I found this group. I have searched all over the web and most

> sites I found deal with parenting issues in a less direct way. The

> responses I've gotten so far have been very reassuring to say the least.

> Thanks!

>

>

>>

>> Hi --

>>

>> No answers, but I do know what you're talking about! I have 3 kids

>> w/Aspergers (ages 6, 14,and 19) -- and 3 more who are quirky, but no

>> diagnosis.

>>

>> I am also married to an undiagnosed Aspie.

>>

>> It can feel overwhelming. I tried not to stress (for YEARS!), but

>> ultimately, it all came back to haunt me -- in other words, our home is a

>> hotbed of Aspie culture, and I cannot ignore it.

>>

>> Some days, I feel despondent. Most days, it's okay. I do feel very lonely

>> at times, because we are like a huge family of people who want/need a

>> significant amount of alone time, and I had wanted a big, interactive

>> family! But seriously, I think our family does better because of the

>> sheer numbers. They are forced to interact and to learn how to treat

>> others. I do know a lot of people; I make friends easily. But we do not

>> socialize out with groups of people often, nor do hubby and I have " couple

>> friends. " I have one very dear friend whose family comes over fairly

>> often, and that's been really nice. She has 2 kids, the ages of 2 of mine.

>> She just recently learned of our diagnoses, and didn't know anything was

>> different. She thinks our family is wonderful and amazing. And it is.

>>

>>

>> For many years, I thought we had " big family " issues. Now I realize it's

>> more. I've met a lot of other big families, and they don't have AS -- and

>> it's different! Their households are much noisier, for one thing. I do

>> love that while there are a lot of us, our home is fairly quiet and

>> organized. We are all big readers, and we crave quiet time. Of course, my

>> younger ones can be noisy. My 6 year old has NO volume control right

>> now....

>>

>> Just wanted to wish you well. Take heart. One thing that helps me is

>> remembering my family members are the same people I've always known and

>> loved, even w/new diagnoses. Best wishes!

>> Peace,

>> JoAnn in CO

>>

>>

>> >>>>>>>>>> I'm and I'm new here. I have a 6 1/2 year old daughter

>> >>>>>>>>>> who we are just in the beginning of the diagnostic process. We

>> >>>>>>>>>> believe she has Asperger's Syndrome. <<<<<<<<<<<<<

>>

>

>

>

--

Sent from my mobile device

-mommy to Emma, Becca, ,

and

Girl Scout cookies are coming!

[Guest guest]

Welcome, . My daughter, who is turning 13 today, is also going through the dx process. A lot of what you said sounds familiar.Good luck! From: lisakrobb@...Date: Sat, 20 Mar 2010 02:23:10 +0000Subject: ( ) Just entering the diagnostic process

Hi there,

I'm and I'm new here. I have a 6 1/2 year old daughter who we are just in the beginning of the diagnostic process. We believe she has Asperger's Syndrome. At school, they see nothing wrong- she's just "a bit different", but at home it's a whole different scenario. She is able to hold things together and quell her anxiety at school, and then she just explodes when she gets home. She is super smart, but socially has a lot of difficulty with knowing when people are annoyed, or how to join a group, how to take turns having the idea for the group, how to interact verbally and so on. She has horrible meltdowns at home, that have gotten shorter with the therapy we've tried for her, but even that does not seem to be enough. When her therapist finally saw the meltdowns we were describing, she was just dumbfounded and really at a loss as to how to help us. So we have her on the waiting list for assessment at a reputable place that deals with ASD.

As a mom, it is heartbreaking to watch her try to interact and make friends and have it all go wrong. I try to be there to coach her through situations in the neighborhood when I can. For the families that have known her since she was born, this is just normal for her and my presence doesn't negatively impact the situation, but as she is getting older- first grade now- it is weird to her new friends if I intervene or am too close to their games or whatever. So I try to keep my distance. I still have a close eye on the interactions and try to walk her through difficulties after the friend has gone home, but sometimes it is too late and we don't really see that friend around too much anymore.

To top things off we are almost 100% sure my husband has Asperger's as well. He is also at the start of the diagnostic process. I took a course on AS with my daughter in mind, but ended up seeing my husband jump off the pages of the texts and out of the videos we watched. He is all for a diagnosis, as he's always felt different and life has at times been a real struggle for him socially and emotionally. However this also leaves me in a bit of a weird place because he doesn't really get where I am coming from or understand my whole view of the situation.

I am sorry to ramble on like this, but I'm feeling a bit overwhelmed and would welcome any advice, suggestions, feedback, or support from anyone who has been where I am now, as either a parent or a spouse. It's been quite difficult to find others who have been in my situation since I am new to all this.

Thanks!

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn More.

[Guest guest]

Sounds like home to me. I have a 13yo aspie daughter with

ocd and undiagnosed aspie husband. Welcome.

Regards, melody

[Guest guest]

Hello ,You have saved me the difficulty of writing my own introduction to the group.  I read your post and thought " Wow!  Did I write that without knowing it? "   LoL!  Only differences are that my dd is 7 and my DH does not want to be diagnosed.  I don't really worry about him as he has learned to cope and function, but we do worry a lot about dd.  Every day without a dx I see as a day I've lost in knowing how best to help her.

So, uh, in short, hi everyone.  I'm Cheryl and I'm in the same boat with . :-)

[Guest guest]

Another thought....We are not going to have hubby diagnosed -- we KNOW. Because

we don't need one more issue (insurance!) to deal with. Or his employer....I

know legally they cannot discriminate, but we all know that's a joke....

JoAnn

>

> I read your post and thought " Wow! Did I write that without knowing

> it? " LoL! Only differences are that my dd is 7 and my DH does not want to

> be diagnosed.

[Guest guest]

Hi Cheryl,

Nice to meet you. I just figured out how to respond to a post so it is seen in

the same thread, so that is how new I am here:) I recently read a really good

book, The Complete Guide to Asperger's Syndrome by Tony Attwood. That gave me a

lot of great information and got me started down the very long path (at least

where I live) to diagnosis. Looking forward to chatting with you about all

this.

>

> Hello ,

>

> You have saved me the difficulty of writing my own introduction to the

> group. I read your post and thought " Wow! Did I write that without knowing

> it? " LoL! Only differences are that my dd is 7 and my DH does not want to

> be diagnosed. I don't really worry about him as he has learned to cope and

> function, but we do worry a lot about dd. Every day without a dx I see as a

> day I've lost in knowing how best to help her.

>

> So, uh, in short, hi everyone. I'm Cheryl and I'm in the same boat with

> . :-)

>