Re: At what age did you tell your child about diagnosis? AND Behavior advice please

[Guest guest]

I told my daughter she has autism at 3 years. I know this sounds young but she has terrible self abuse tantrums and we needed to tell her why. I told her I know it is hard for her to control sometimes but mommy still needs her to try. that also would explain the meds she takes and her therapies. She is bored with knowing she has autism it is not a big deal to her. She is also very smart and learned to read at a 10 year old level when she was 3 so I told her that was special because of autism so we tried to discuss things that would be harder for her and how much she has excelled over her peers too.From: jdarawi

<jenniferdarawi@...>Subject: ( ) At what age did you tell your child about diagnosis? AND Behavior advice please Date: Wednesday, May 26, 2010, 9:21 PM

Hello,

I haven't posted or read lately, I'm sorry to say. Our third child was born 15 months ago with Goldenhar Syndrome, including many different health problems, so that has taken a lot of our time.

My first question:

At what age did you tell your child about Asperger Syndrome?

I wondered if telling her about her diagnosis might help with dealing with her behavior through self-awareness.

Our daughter is 6.5. We haven't done any therapy or anything specific to help her with AS since our son was born. We finished off a behavior plan we had started around that time, and it has helped to reduce her tantrums.

However, she struggles (and we parents struggle) with a lot of other behavior challenges, some days more than others. Six months ago her pediatrician gave me a name of a developmental behavioral pediatric specialist, but I haven't contacted her yet, due to our busy family life. Do you think this is a good next step?

We homeschool her, and she has many good qualities, and we enjoy her, but there are also many challenges. These include: screaming, anxiety, impulsivity, distractibility, being silly and wild etc.

She was in OT a couple of years ago, but we haven't returned to that lately. She no longer follows a sensory diet, but we do know a lot of those choices, and encourage her to be active throughout the day (outdoor activity, swinging, mini-trampoline etc.)

What would you do next?

Thanks,

[Guest guest]

Ian was dx'd at 7+...........and we told him right away. After the meetings with the child psych and her dx, we told him what it was called. But,,,,,we also told him that we all have "something".......

Made it no big deal.

We adopted our last child and chose to always tell her about her birth parents from day one, as well. So that, one day, we didn't just "spring" it on them.....and make them wonder if there was a reason why we didn't tell them, ya know?

Anyway, this was the way we did it. Good luck.

Dream as if you'll live forever,

Live as if you'll die today.

Robin

From: jdarawi <jenniferdarawi@...>Subject: ( ) At what age did you tell your child about diagnosis? AND Behavior advice please Date: Wednesday, May 26, 2010, 10:21 PM

Hello,I haven't posted or read lately, I'm sorry to say. Our third child was born 15 months ago with Goldenhar Syndrome, including many different health problems, so that has taken a lot of our time.My first question:At what age did you tell your child about Asperger Syndrome?I wondered if telling her about her diagnosis might help with dealing with her behavior through self-awareness.Our daughter is 6.5. We haven't done any therapy or anything specific to help her with AS since our son was born. We finished off a behavior plan we had started around that time, and it has helped to reduce her tantrums. However, she struggles (and we parents struggle) with a lot of other behavior challenges, some days more than others. Six months ago her pediatrician gave me a name of a developmental behavioral pediatric specialist, but I haven't contacted her yet, due to our busy family life. Do you think this is a good

next step?We homeschool her, and she has many good qualities, and we enjoy her, but there are also many challenges. These include: screaming, anxiety, impulsivity, distractibility, being silly and wild etc.She was in OT a couple of years ago, but we haven't returned to that lately. She no longer follows a sensory diet, but we do know a lot of those choices, and encourage her to be active throughout the day (outdoor activity, swinging, mini-trampoline etc.)What would you do next?Thanks,

[Guest guest]

Self esteem

I would tell her about her strengths. I would share over

a long period of time that people have different strengths and

weaknesses and tell her about people you both know that

are very social and those that are very quiet. This is a type

of social story you can describe members of the family to

her and what they like and don't like. Build up her self esteem

about what she is good at and then you can label her weakness

in social communication. Some kids like to have a name

for why socializing is hard. Other kids are upset have a label

put on them. You don't have to say Aspereger's to say

you are great at remembering facts but you find it hard

to talk in groups. Or you don't like a lot of noise.

Help her to have more insight on her feelings, label them

so she doesn't see everything as black and white.

Social skills

I would teach her people talk with there eyes. So look at people to see if they

are bored. It make seem that you are being kind listening to her if she is long

winded. Our kids really like to be heard.

But at certain times, like if you are cooking or busy don't

just listen to her. Non verbally get in her face and make

a bored face. Try to get her to look at you without words

so that she starts to look at non verbal cues. This is taught

in most social skill classes. Michele Winner is an AS expert

and wants AS to learn to listen with their bodies. The

whole body needs to be facing the speaker. The RDI taining

group too talks about AS kids being too static (fact driven

and not dynamic). If you can make headway in this area

write back to us and tell us about it.

Anxiety

Try a low dose medication trial if anxiety increases.

I am sure her anxiety would increase if she was in public school.

It is very hard for AS kids to cope in school

with all the stimulation and if your child

has a deficit in processing speed (many AS kids do)

this is difficult to overcome.

Behavior

Keep up with positive behavior therapy and shaping coping

skills. Changes are part of life

these kids have difficulty with change often. If she

doesn't that is a major blessing. If she does this really

impacts on life.

If she gets an education, can keep her anxiety in check,

can be flexible in social situations and has

learned how to read non verbal communication

she can do well in life fitting in and not getting

herself isolated.

I hope this helps,

Pam

>

> Hello,

>

> I haven't posted or read lately, I'm sorry to say. Our third child was born

15 months ago with Goldenhar Syndrome, including many different health problems,

so that has taken a lot of our time.

>

> My first question:

> At what age did you tell your child about Asperger Syndrome?

>

> I wondered if telling her about her diagnosis might help with dealing with her

behavior through self-awareness.

>

> Our daughter is 6.5. We haven't done any therapy or anything specific to help

her with AS since our son was born. We finished off a behavior plan we had

started around that time, and it has helped to reduce her tantrums.

>

> However, she struggles (and we parents struggle) with a lot of other behavior

challenges, some days more than others. Six months ago her pediatrician gave me

a name of a developmental behavioral pediatric specialist, but I haven't

contacted her yet, due to our busy family life. Do you think this is a good next

step?

>

> We homeschool her, and she has many good qualities, and we enjoy her, but

there are also many challenges. These include: screaming, anxiety,

impulsivity, distractibility, being silly and wild etc.

>

> She was in OT a couple of years ago, but we haven't returned to that lately.

She no longer follows a sensory diet, but we do know a lot of those choices, and

encourage her to be active throughout the day (outdoor activity, swinging,

mini-trampoline etc.)

>

> What would you do next?

>

>

> Thanks,

>

>

[Guest guest]

I told my son a week after I found out--he was relieved, because now we GET him, and understand he isn't just being odd or difficult.

So in our favor, it worked.

Purrs & Kisses,

Kristal of Digi Kitty

The Kitty who loves Digi!

Designer for the VDBC "More" Team - you can see my designs HERE!!!

From: Pamela <susanonderko@...>Subject: ( ) Re: At what age did you tell your child about diagnosis? AND Behavior advice please Date: Thursday, May 27, 2010, 1:42 PM

Self esteemI would tell her about her strengths. I would share over a long period of time that people have different strengths and weaknesses and tell her about people you both know thatare very social and those that are very quiet. This is a typeof social story you can describe members of the family to her and what they like and don't like. Build up her self esteemabout what she is good at and then you can label her weaknessin social communication. Some kids like to have a namefor why socializing is hard. Other kids are upset have a labelput on them. You don't have to say Aspereger's to sayyou are great at remembering facts but you find it hardto talk in groups. Or you don't like a lot of noise. Help her to have more insight on her feelings, label themso she doesn't see everything as black and white. Social skills I would teach her people talk with there eyes. So look at people to

see if they are bored. It make seem that you are being kind listening to her if she is long winded. Our kids really like to be heard.But at certain times, like if you are cooking or busy don'tjust listen to her. Non verbally get in her face and makea bored face. Try to get her to look at you without wordsso that she starts to look at non verbal cues. This is taughtin most social skill classes. Michele Winner is an AS expertand wants AS to learn to listen with their bodies. Thewhole body needs to be facing the speaker. The RDI taininggroup too talks about AS kids being too static (fact drivenand not dynamic). If you can make headway in this area write back to us and tell us about it. AnxietyTry a low dose medication trial if anxiety increases.I am sure her anxiety would increase if she was in public school.It is very hard for AS kids to cope in school with all the stimulation and if your

childhas a deficit in processing speed (many AS kids do)this is difficult to overcome. BehaviorKeep up with positive behavior therapy and shaping coping skills. Changes are part of lifethese kids have difficulty with change often. If she doesn't that is a major blessing. If she does this reallyimpacts on life. If she gets an education, can keep her anxiety in check,can be flexible in social situations and haslearned how to read non verbal communicationshe can do well in life fitting in and not gettingherself isolated. I hope this helps,Pam >> Hello,> > I haven't posted or read lately, I'm sorry

to say. Our third child was born 15 months ago with Goldenhar Syndrome, including many different health problems, so that has taken a lot of our time.> > My first question:> At what age did you tell your child about Asperger Syndrome?> > I wondered if telling her about her diagnosis might help with dealing with her behavior through self-awareness.> > Our daughter is 6.5. We haven't done any therapy or anything specific to help her with AS since our son was born. We finished off a behavior plan we had started around that time, and it has helped to reduce her tantrums. > > However, she struggles (and we parents struggle) with a lot of other behavior challenges, some days more than others. Six months ago her pediatrician gave me a name of a developmental behavioral pediatric specialist, but I haven't contacted her yet, due to our busy family life. Do you think this is a good next step?>

> We homeschool her, and she has many good qualities, and we enjoy her, but there are also many challenges. These include: screaming, anxiety, impulsivity, distractibility, being silly and wild etc.> > She was in OT a couple of years ago, but we haven't returned to that lately. She no longer follows a sensory diet, but we do know a lot of those choices, and encourage her to be active throughout the day (outdoor activity, swinging, mini-trampoline etc.)> > What would you do next?> > > Thanks,> >

[Guest guest]

My son was diagnosed about 1-1/2 years ago, at age 9. But we just recently told him there is a name for his condition, and I got him the book, "Let me Tell you about Apsergers" for him to read this weekend. I don't know if there is a right time, but just recently he was having a hard time in school, getting upset with a kid who was picking on him. And he was talking to me and crying, saying," why am I like this?" I told him there are other kids like him, there is a name for it, and that's what the counselor and psychiatrist are there to help with. We also looked at some stuff on the internet together.

So yes, I think going to the behavior specialist is a good next step for you. Maybe your daughter is young to understand her diagnosis, but you know her better. Our concern was that we didn't want to give our son an excuse to say "I can't do my homework", or "I can't help hitting my brother," etc. because he has Aspergers. But we knew we would tell him eventually, when we could handle it and when it seemed like he was ready.

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

Suzanne

suzmarkwood@...

From: jdarawi <jenniferdarawi@...>Subject: ( ) At what age did you tell your child about diagnosis? AND Behavior advice please Date: Wednesday, May 26, 2010, 8:21 PM

Hello,I haven't posted or read lately, I'm sorry to say. Our third child was born 15 months ago with Goldenhar Syndrome, including many different health problems, so that has taken a lot of our time.My first question:At what age did you tell your child about Asperger Syndrome?I wondered if telling her about her diagnosis might help with dealing with her behavior through self-awareness.Our daughter is 6.5. We haven't done any therapy or anything specific to help her with AS since our son was born. We finished off a behavior plan we had started around that time, and it has helped to reduce her tantrums. However, she struggles (and we parents struggle) with a lot of other behavior challenges, some days more than others. Six months ago her pediatrician gave me a name of a developmental behavioral pediatric specialist, but I haven't contacted her yet, due to our busy family life. Do you think this is a good

next step?We homeschool her, and she has many good qualities, and we enjoy her, but there are also many challenges. These include: screaming, anxiety, impulsivity, distractibility, being silly and wild etc.She was in OT a couple of years ago, but we haven't returned to that lately. She no longer follows a sensory diet, but we do know a lot of those choices, and encourage her to be active throughout the day (outdoor activity, swinging, mini-trampoline etc.)What would you do next?Thanks,

[Guest guest]

My son (age 7 years) was recently officially diagnosed, although I have

suspected it for a few years, since I learnt was Asperger's is. I read him the

picture book, " All Cat's have Asperger's Syndrome " - he was too busy copying the

poses of the cats in the photos to take it in.

My son was already aware he was " different " - finds it hard to make friends, is

a bully magnet, intellectual, sensitive etc

My son's behaviour issues improved dramatically when I took additives out of his

diet (artificial colours, natural colour annatto 160b), preservatives, flavour

enhancers, artificial sweeteners etc). I have to be careful with the level of

salicylates (natural asprins in fruit etc) because these affect him badly too.

Miranda

>

> Hello,

>

> I haven't posted or read lately, I'm sorry to say. Our third child was born

15 months ago with Goldenhar Syndrome, including many different health problems,

so that has taken a lot of our time.

>

> My first question:

> At what age did you tell your child about Asperger Syndrome?

>

> I wondered if telling her about her diagnosis might help with dealing with her

behavior through self-awareness.

>

> Our daughter is 6.5. We haven't done any therapy or anything specific to help

her with AS since our son was born. We finished off a behavior plan we had

started around that time, and it has helped to reduce her tantrums.

>

> However, she struggles (and we parents struggle) with a lot of other behavior

challenges, some days more than others. Six months ago her pediatrician gave me

a name of a developmental behavioral pediatric specialist, but I haven't

contacted her yet, due to our busy family life. Do you think this is a good next

step?

>

> We homeschool her, and she has many good qualities, and we enjoy her, but

there are also many challenges. These include: screaming, anxiety,

impulsivity, distractibility, being silly and wild etc.

>

> She was in OT a couple of years ago, but we haven't returned to that lately.

She no longer follows a sensory diet, but we do know a lot of those choices, and

encourage her to be active throughout the day (outdoor activity, swinging,

mini-trampoline etc.)

>

> What would you do next?

>

>

> Thanks,

>

>

[Guest guest]

I told my son when he was seven. Well, sort of, he figured out it's what we

were thinking. He looked over my shoulder when I was on a website and said, " I

DO NOT HAVE ASPERGER SYNDROME! " So we talked about it. I told him he didn't

have to believe it but that it was kind of important that his school believe it

because otherwise he couldn't be there. He immediately started crying. We'd

been through so many schools and the school prior to the one he was attending at

the time was just AWFUL. I asked why he was crying and he said, " I don't

want to leave my school!! " Because it was a great school and everyone was good

to him and they knew what to do and how to help. I told him he wouldn't have to

leave his school as long as the school thought he had asperger syndrome and then

he was happy again. I asked him, " Are you okay with asperger syndrome? " He

said, " Yes, as long as I don't have to leave my school. " Shortly after that he

started telling people, " I have asperger syndrome. " and he asked, " Can I give

my asperger syndrome to my sister? I don't want it any more. " Now, though, he

says he likes his asperger syndrome because it helps him with being really smart

in some things. Which is what we've always said. I've always told him that

everyone is good at some things and not as good at others and his collection of

talents and challenges just have a special name. I really feel that

knowing has been a huge help. He knows how to advocate for himself and we can

tell other kids about it without worry that they'll tell him since he already

knows. We educate everyone very openly and it has prevented bullying and kids

have come to like him despite his odd behavior. He has friends and a good life

at this point.

I'm not sure if telling helped with his behavior. Knowing he had asperger

syndrome helped me learn what to do to help his behavior. My favorite behavior

book is Raising Your Spirited Child. I bought it at a yard sale for 50 cents.

It's small and inexpensive even if it's new and has a lot of practical

suggestions that worked exceedingly well for because they focus on causes

and triggers of behavior. If I find out WHY is doing something I can

almost always find a solution. It's about choosing battles and letting some

things go and thinking of priorities and repeating calmly the same things OVER

and OVER and OVER. " Hitting hurts " ...omg how many times did I say that! He now

says, " Hitting is against my morals. " LOL. He's 13 and seems to be headed on a

good path. My biggest hope is that he'll be able to cope on his own as an

adult. My biggest fear is that he won't and when I'm gone he won't do well. I

hope he and his sister remain close because I think they'll need each other.

Miriam

>

> Hello,

>

> I haven't posted or read lately, I'm sorry to say. Our third child was born

15 months ago with Goldenhar Syndrome, including many different health problems,

so that has taken a lot of our time.

>

> My first question:

> At what age did you tell your child about Asperger Syndrome?

>

> I wondered if telling her about her diagnosis might help with dealing with her

behavior through self-awareness.

>

> Our daughter is 6.5. We haven't done any therapy or anything specific to help

her with AS since our son was born. We finished off a behavior plan we had

started around that time, and it has helped to reduce her tantrums.

>

> However, she struggles (and we parents struggle) with a lot of other behavior

challenges, some days more than others. Six months ago her pediatrician gave me

a name of a developmental behavioral pediatric specialist, but I haven't

contacted her yet, due to our busy family life. Do you think this is a good next

step?

>

> We homeschool her, and she has many good qualities, and we enjoy her, but

there are also many challenges. These include: screaming, anxiety,

impulsivity, distractibility, being silly and wild etc.

>

> She was in OT a couple of years ago, but we haven't returned to that lately.

She no longer follows a sensory diet, but we do know a lot of those choices, and

encourage her to be active throughout the day (outdoor activity, swinging,

mini-trampoline etc.)

>

> What would you do next?

>

>

> Thanks,

>

>

[Guest guest]

,

My son was diagnosed late, at age 14, so he was informed and involved also in

the evaluation process. I think it was important for him to be able to

understand what was going on and be cooperative. As soon as we told him why he

was evaluated, he started to look up information about AS on his own on the

Internet. We also gave him some books to read, for instance Luke :

Freaks, Geeks and Asperger Syndrome and " All Cats have Asperger Syndrome " .

At leas for him it was a big relief to know why he felt and acted differently.

He has also been fairly open with his diagnosis. For instance he wanted to

inform the other kids at school when his accommodations became " visible " , to

avoid any questions about that.

As your daughter is much younger I understand it will be different, but I would

be as open as possible. I think many of these kids already know they are

different, and that knowing why would be positive.

Regards,

Rannveig/.

[Guest guest]

Go see the dev. doc and find out what she/he suggests. Sounds like a

great idea! She probably knows therapists in your area that can work

with you on specific issues.

Roxanna

Whenever I feel blue, I start breathing again.

( ) At what age did you tell your child about

diagnosis? AND Behavior advice please

Hello,

I haven't posted or read lately, I'm sorry to say. Our third child was

born 15 months ago with Goldenhar Syndrome, including many different

health problems, so that has taken a lot of our time.

My first question:

At what age did you tell your child about Asperger Syndrome?

I wondered if telling her about her diagnosis might help with dealing

with her behavior through self-awareness.

Our daughter is 6.5. We haven't done any therapy or anything specific

to help her with AS since our son was born. We finished off a behavior

plan we had started around that time, and it has helped to reduce her

tantrums.

However, she struggles (and we parents struggle) with a lot of other

behavior challenges, some days more than others. Six months ago her

pediatrician gave me a name of a developmental behavioral pediatric

specialist, but I haven't contacted her yet, due to our busy family

life. Do you think this is a good next step?

We homeschool her, and she has many good qualities, and we enjoy her,

but there are also many challenges. These include: screaming,

anxiety, impulsivity, distractibility, being silly and wild etc.

She was in OT a couple of years ago, but we haven't returned to that

lately. She no longer follows a sensory diet, but we do know a lot of

those choices, and encourage her to be active throughout the day

(outdoor activity, swinging, mini-trampoline etc.)

What would you do next?

Thanks,