Re: Response from Family regarding HFA/Asperger Syndrome

[Guest guest]

Okay, so I know R hasn't been officially dxed yet but when I'm discussing why

he's being evaluated, the only people that seem to " get it " are my mom and my

husband. Think I'm going to have a hard time getting folks to understand what

HFA/Asperger syndrome is and how the behaviors manifest.

A comment from a family member, after explaining he's been placed in a social

adjustment class for hitting and biting - After explaining that we think he's

" on the spectrum " and are having him evaluated further:

" R seems like such a happy, normal, sweet little boy it's hard to believe that

he has that many struggles. "

My in-laws aren't saying anything about his issues at all - example: when I let

them watch a video of R meticulously lining up markers so they are in same color

pattern (we have 2 sets) but mirrored while he's counting by twos, the response

was, " well he seems to have math concepts down. " He's 5...

Ugh...am I reading too much into these responses? lol

[Guest guest]

I think we all go through this. Our family members weren't that great about their reactions to the news. It's hard!! HFA/AS causes additional issues, b/c the kids don't always flap, spin, rock, and do some of the typical Autism-like behaviors. Good luck! To: autism-aspergers Sent:

Monday, January 16, 2012 10:28 AM Subject: RE: Response from Family regarding HFA/Asperger Syndrome

Okay, so I know R hasn't been officially dxed yet but when I'm discussing why he's being evaluated, the only people that seem to "get it" are my mom and my husband. Think I'm going to have a hard time getting folks to understand what HFA/Asperger syndrome is and how the behaviors manifest.

A comment from a family member, after explaining he's been placed in a social adjustment class for hitting and biting - After explaining that we think he's "on the spectrum" and are having him evaluated further:

"R seems like such a happy, normal, sweet little boy it's hard to believe that he has that many struggles."

My in-laws aren't saying anything about his issues at all - example: when I let them watch a video of R meticulously lining up markers so they are in same color pattern (we have 2 sets) but mirrored while he's counting by twos, the response was, "well he seems to have math concepts down." He's 5...

Ugh...am I reading too much into these responses? lol

[Guest guest]

Thanks, - mine does rock and spin but not as much these days - he's been

doing OT for two years now. They've seen the spinning and they've seen me

" brush " and give joint compressions too. They seem to think R is just " hyper "

and even tried to attribute that behavior to chocolate milk once. hardly

ever drinks milk at all these days and obviously we are still having issues. lol

Just seems like denial to me...some of these things have been going on since he

was 2 and have become more noticeable. We've tried ADHD meds and OT but he's

still having issues. I just don't see how they can't see it, unless they just

don't want to see it...

>

> I think we all go through this.  Our family members weren't that great about

their reactions to the news.  It's hard!!  HFA/AS causes additional issues,

b/c the kids don't always flap, spin, rock, and do some of the typical

Autism-like behaviors.  Good luck!

>

>  

>

>

>

> ________________________________

>

> To: autism-aspergers

> Sent: Monday, January 16, 2012 10:28 AM

> Subject: RE: Response from Family regarding HFA/Asperger

Syndrome

>

>

>  

> Okay, so I know R hasn't been officially dxed yet but when I'm discussing why

he's being evaluated, the only people that seem to " get it " are my mom and my

husband. Think I'm going to have a hard time getting folks to understand what

HFA/Asperger syndrome is and how the behaviors manifest.

>

> A comment from a family member, after explaining he's been placed in a social

adjustment class for hitting and biting - After explaining that we think he's

" on the spectrum " and are having him evaluated further:

>

> " R seems like such a happy, normal, sweet little boy it's hard to believe that

he has that many struggles. "

>

> My in-laws aren't saying anything about his issues at all - example: when I

let them watch a video of R meticulously lining up markers so they are in same

color pattern (we have 2 sets) but mirrored while he's counting by twos, the

response was, " well he seems to have math concepts down. " He's 5...

>

> Ugh...am I reading too much into these responses? lol

>

[Guest guest]

Yes it is denial. They do not want to see it and for the most part they don't have to face reality b/c they aren't left w/ the burden of dealing with him. They remain able to live in their own reality. My son is def ADHD as well and that's what you notice first. I told them if you'd rather call it ADHD b/c it makes you feel better, go ahead, but my son has autism too. My son is on stimulant meds but he drinks a lot of milk. From:

To: autism-aspergers Sent: Monday, January 16, 2012 11:06 AM Subject: Re: Response from Family regarding HFA/Asperger Syndrome

Thanks, - mine does rock and spin but not as much these days - he's been doing OT for two years now. They've seen the spinning and they've seen me "brush" and give joint compressions too. They seem to think R is just "hyper" and even tried to attribute that behavior to chocolate milk once. hardly ever drinks milk at all these days and obviously we are still having issues. lol

Just seems like denial to me...some of these things have been going on since he was 2 and have become more noticeable. We've tried ADHD meds and OT but he's still having issues. I just don't see how they can't see it, unless they just don't want to see it...

>

> I think we all go through this. Our family members weren't that great about their reactions to the news. It's hard!! HFA/AS causes additional issues, b/c the kids don't always flap, spin, rock, and do some of the typical Autism-like behaviors. Good luck!

>

> Â

>

>

>

> ________________________________

>

> To: autism-aspergers

> Sent: Monday, January 16, 2012 10:28 AM

> Subject: RE: Response from Family regarding HFA/Asperger Syndrome

>

>

> Â

> Okay, so I know R hasn't been officially dxed yet but when I'm discussing why he's being evaluated, the only people that seem to "get it" are my mom and my husband. Think I'm going to have a hard time getting folks to understand what HFA/Asperger syndrome is and how the behaviors manifest.

>

> A comment from a family member, after explaining he's been placed in a social adjustment class for hitting and biting - After explaining that we think he's "on the spectrum" and are having him evaluated further:

>

> "R seems like such a happy, normal, sweet little boy it's hard to believe that he has that many struggles."

>

> My in-laws aren't saying anything about his issues at all - example: when I let them watch a video of R meticulously lining up markers so they are in same color pattern (we have 2 sets) but mirrored while he's counting by twos, the response was, "well he seems to have math concepts down." He's 5...

>

> Ugh...am I reading too much into these responses? lol

>

[Guest guest]

thanks for sharing your similar frustrations, shannon...

and huh, we tried stimulants and it did not make a difference in the school

setting.

Mine happens to have duarte galactosemia and it's suggested that he not ingest

more than 16oz of fluid milk a day but he's not interested in drinking it

anyway. he still has cheese, yogurt and ice cream.

> >

> > I think we all go through this.  Our family members weren't that great

about their reactions to the news.  It's hard!!  HFA/AS causes additional

issues, b/c the kids don't always flap, spin, rock, and do some of the typical

Autism-like behaviors.  Good luck!

> >

> >  

> >

> >

> >

> > ________________________________

> > From: <lauren.hassell@>

> > To: autism-aspergers

> > Sent: Monday, January 16, 2012 10:28 AM

> > Subject: RE: Response from Family regarding HFA/Asperger

Syndrome

> >

> >

> >  

> > Okay, so I know R hasn't been officially dxed yet but when I'm discussing

why he's being evaluated, the only people that seem to " get it " are my mom and

my husband. Think I'm going to have a hard time getting folks to understand what

HFA/Asperger syndrome is and how the behaviors manifest.

> >

> > A comment from a family member, after explaining he's been placed in a

social adjustment class for hitting and biting - After explaining that we think

he's " on the spectrum " and are having him evaluated further:

> >

> > " R seems like such a happy, normal, sweet little boy it's hard to believe

that he has that many struggles. "

> >

> > My in-laws aren't saying anything about his issues at all - example: when I

let them watch a video of R meticulously lining up markers so they are in same

color pattern (we have 2 sets) but mirrored while he's counting by twos, the

response was, " well he seems to have math concepts down. " He's 5...

> >

> > Ugh...am I reading too much into these responses? lol

> >

>

[Guest guest]

Wow, no difference? Mine is like a totally different kid on stimulants. His is on Concerta, but didn't do well on Adderall. To: autism-aspergers Sent: Monday, January 16, 2012 12:12 PM Subject: Re: Response from Family

regarding HFA/Asperger Syndrome

thanks for sharing your similar frustrations, shannon...

and huh, we tried stimulants and it did not make a difference in the school setting.

Mine happens to have duarte galactosemia and it's suggested that he not ingest more than 16oz of fluid milk a day but he's not interested in drinking it anyway. he still has cheese, yogurt and ice cream.

> >

> > I think we all go through this. Our family members weren't that great about their reactions to the news. It's hard!! HFA/AS causes additional issues, b/c the kids don't always flap, spin, rock, and do some of the typical Autism-like behaviors. Good luck!

> >

> > ÂÂ

> >

> >

> >

> > ________________________________

> > From: <lauren.hassell@>

> > To: autism-aspergers

> > Sent: Monday, January 16, 2012 10:28 AM

> > Subject: RE: Response from Family regarding HFA/Asperger Syndrome

> >

> >

> > ÂÂ

> > Okay, so I know R hasn't been officially dxed yet but when I'm discussing why he's being evaluated, the only people that seem to "get it" are my mom and my husband. Think I'm going to have a hard time getting folks to understand what HFA/Asperger syndrome is and how the behaviors manifest.

> >

> > A comment from a family member, after explaining he's been placed in a social adjustment class for hitting and biting - After explaining that we think he's "on the spectrum" and are having him evaluated further:

> >

> > "R seems like such a happy, normal, sweet little boy it's hard to believe that he has that many struggles."

> >

> > My in-laws aren't saying anything about his issues at all - example: when I let them watch a video of R meticulously lining up markers so they are in same color pattern (we have 2 sets) but mirrored while he's counting by twos, the response was, "well he seems to have math concepts down." He's 5...

> >

> > Ugh...am I reading too much into these responses? lol

> >

>

[Guest guest]

Nope, not in the school setting - I see a bigger difference in overall behavior

changes now that he's on Clonidine BUT he's still having trouble in school too.

We had to take him off of the stimulants anyway b/c he wasn't growing. He didn't

gain in height at all - He used to be in the 90th percentile and it dropped down

all the way to 30th. AND his weight went from the 50% percentile and dropped to

the 7th. This was only on a whopping 5MG of focalin XR.

> > >

> > > I think we all go through this.  Our family members weren't that

great about their reactions to the news.  It's hard!!  HFA/AS

causes additional issues, b/c the kids don't always flap, spin, rock, and do

some of the typical Autism-like behaviors.  Good luck!

> > >

> > >  

> > >

> > >

> > >

> > > ________________________________

> > > From: <lauren.hassell@>

> > > To: autism-aspergers

> > > Sent: Monday, January 16, 2012 10:28 AM

> > > Subject: RE: Response from Family regarding

HFA/Asperger Syndrome

> > >

> > >

> > >  

> > > Okay, so I know R hasn't been officially dxed yet but when I'm discussing

why he's being evaluated, the only people that seem to " get it " are my mom and

my husband. Think I'm going to have a hard time getting folks to understand what

HFA/Asperger syndrome is and how the behaviors manifest.

> > >

> > > A comment from a family member, after explaining he's been placed in a

social adjustment class for hitting and biting - After explaining that we think

he's " on the spectrum " and are having him evaluated further:

> > >

> > > " R seems like such a happy, normal, sweet little boy it's hard to believe

that he has that many struggles. "

> > >

> > > My in-laws aren't saying anything about his issues at all - example: when

I let them watch a video of R meticulously lining up markers so they are in same

color pattern (we have 2 sets) but mirrored while he's counting by twos, the

response was, " well he seems to have math concepts down. " He's 5...

> > >

> > > Ugh...am I reading too much into these responses? lol

> > >

> >

>

[Guest guest]

You said “Ugh...am I

reading too much into these responses? lol â€

We are kind of still going through this now and it’s been almost two years Ella

is now four. My side … their (insert your own word, I’m keeping it rated G) my

mother thinks I should give her Benadryl to “calm†her down (she doesn’t have

ADD or ADHD a specialist dx’ed her with Asperger’s). Obviously we don’t agree

with the Benadryl. We have no support from my side. My husband’s parents think

all she needs is a wooden spoon to shape her up, we don’t agree with that

either. My family lives far away and we live in the same town as my in-laws. It’s

called making excuses, denial or someone wants to blame someone else. We are

getting thicker skin to it. It just bothers me the most because those attitudes

from others will eventually hurt Ella in the long run. From:

To: autism-aspergers Sent: Monday, January 16, 2012 9:28 AM Subject: RE: Response from Family regarding HFA/Asperger Syndrome

Okay, so I know R hasn't been officially dxed yet but when I'm discussing why he's being evaluated, the only people that seem to "get it" are my mom and my husband. Think I'm going to have a hard time getting folks to understand what HFA/Asperger syndrome is and how the behaviors manifest.

A comment from a family member, after explaining he's been placed in a social adjustment class for hitting and biting - After explaining that we think he's "on the spectrum" and are having him evaluated further:

"R seems like such a happy, normal, sweet little boy it's hard to believe that he has that many struggles."

My in-laws aren't saying anything about his issues at all - example: when I let them watch a video of R meticulously lining up markers so they are in same color pattern (we have 2 sets) but mirrored while he's counting by twos, the response was, "well he seems to have math concepts down." He's 5...

Ugh...am I reading too much into these responses? lol

[Guest guest]

, I'm sorry to hear you are having difficulties too - I guess I should just

expect it and when people are actually understanding of the situation, I'll just

be pleasantly surprised. Ack, lol

>

> You said “Ugh...am I

> reading too much into these responses? lol â€

> We are kind of still going through this now and it’s been almost two years

Ella

> is now four. My side … their (insert your own word, I’m keeping it rated

G) my

> mother thinks I should give her Benadryl to “calm†her down (she doesn’t

have

> ADD or ADHD a specialist dx’ed her with Asperger’s). Obviously we don’t

agree

> with the Benadryl. We have no support from my side. My husband’s parents

think

> all she needs is a wooden spoon to shape her up, we don’t agree with that

> either. My family lives far away and we live in the same town as my in-laws.

It’s

> called making excuses, denial or someone wants to blame someone else. We are

> getting thicker skin to it. It just bothers me the most because those

attitudes

> from others will eventually hurt Ella in the long run.  

>  

>

>

>

> ________________________________

>

> To: autism-aspergers

> Sent: Monday, January 16, 2012 9:28 AM

> Subject: RE: Response from Family regarding HFA/Asperger

Syndrome

>

>

>  

> Okay, so I know R hasn't been officially dxed yet but when I'm discussing why

he's being evaluated, the only people that seem to " get it " are my mom and my

husband. Think I'm going to have a hard time getting folks to understand what

HFA/Asperger syndrome is and how the behaviors manifest.

>

> A comment from a family member, after explaining he's been placed in a social

adjustment class for hitting and biting - After explaining that we think he's

" on the spectrum " and are having him evaluated further:

>

> " R seems like such a happy, normal, sweet little boy it's hard to believe that

he has that many struggles. "

>

> My in-laws aren't saying anything about his issues at all - example: when I

let them watch a video of R meticulously lining up markers so they are in same

color pattern (we have 2 sets) but mirrored while he's counting by twos, the

response was, " well he seems to have math concepts down. " He's 5...

>

> Ugh...am I reading too much into these responses? lol

>

[Guest guest]

hi , you are in a tough situation. Asperger's can be very

isolating. Even in the "nicest"

of families--- my family wasn't vocal about

giving negative feedback or suggestions, but we didn't get invited

over to play either.....

One thing I found concerning other people's attitudes, was this:

other people pick up on my attitude---

if I'm negative, critical or show embarrassment about my child in

public, other people quickly mimic

my attitude (even if it's subtle). If I'm positive, affectionate

and matter of fact about my child's

Asperger's, people pick up on that and their behavior towards my

child sometimes improves.

This isn't

ALWAYS the case. But I found it to be especially true with aunt/

grandmothers, and other people

who might feel entitled to put their two cents worth in.

Good luck, and hang in there!

,

As wrong as this may be, I love

to use sarcasm. Other times

I use grace, I have been telling those close to us

we all need to be on the

same page. When that doesn’t work I’ve tried guilt.

I am very careful now that

she is getting older since I worry about what is

said around her.

From:

To:

autism-aspergers

Sent:

Tuesday, January 17, 2012 12:12 PM

Subject:

Re: Response from Family

regarding HFA/Asperger Syndrome

, I'm sorry to hear you are having

difficulties too - I guess I should just

expect it and when people are actually

understanding of the situation, I'll just be

pleasantly surprised. Ack, lol

>

> You said “Ugh...am I

> reading too much into these responses?

lol ”

> We are kind of still going through this

now and it’s been almost two years Ella

> is now four. My side … their (insert your

own word, I’m keeping it rated G) my

> mother thinks I should give her Benadryl

to “calm” her down (she doesn’t have

> ADD or ADHD a specialist dx’ed her with

Asperger’s). Obviously we don’t agree

> with the Benadryl. We have no support

from my side. My husband’s parents think

> all she needs is a wooden spoon to shape

her up, we don’t agree with that

> either. My family lives far away and we

live in the same town as my in-laws. It’s

> called making excuses, denial or someone

wants to blame someone else. We are

> getting thicker skin to it. It just

bothers me the most because those attitudes

> from others will eventually hurt Ella in

the long run.

>

>

>

>

> ________________________________

>

> To: autism-aspergers

> Sent: Monday, January 16, 2012 9:28 AM

> Subject: RE: Response

from Family regarding HFA/Asperger Syndrome

>

>

>

> Okay, so I know R hasn't been officially

dxed yet but when I'm discussing why he's

being evaluated, the only people that seem to

"get it" are my mom and my husband. Think I'm

going to have a hard time getting folks to

understand what HFA/Asperger syndrome is and

how the behaviors manifest.

>

> A comment from a family member, after

explaining he's been placed in a social

adjustment class for hitting and biting -

After explaining that we think he's "on the

spectrum" and are having him evaluated

further:

>

> "R seems like such a happy, normal, sweet

little boy it's hard to believe that he has

that many struggles."

>

> My in-laws aren't saying anything about

his issues at all - example: when I let them

watch a video of R meticulously lining up

markers so they are in same color pattern (we

have 2 sets) but mirrored while he's counting

by twos, the response was, "well he seems to

have math concepts down." He's 5...

>

> Ugh...am I reading too much into these

responses? lol

>

[Guest guest]

Thanks , I am positive and keep it real with them. We

pull out the sarcasm after the constant comments. Or when they ask a question

and they don’t get the answer they want. They will ask and ask the answer will

always be the same. We are also very careful what and how we say things around

our daughter. Example: When we were telling in-laws about Ella’s

DX they would ask why this and why that. They wouldn’t accept it. We would site

an example of why she was dx’ed. Then they would say “oh I know a kid who does

this†then we would give another example. They would say “oh I know another kid

who did thatâ€. This went on then we would then get sarcastic and say well do

you know a kid who does ALL of that. I guess we get frustrated with the denial.

We are never negative and are not embarrassed of

our daughter especially when in public. We have had people stare and I act as

if they are not there because we don’t want Ella to get a complex. So when we use our sarcasm it is usually when

someone else’s ignorance needs to be snapped into reality. To:

autism-aspergers Sent:

Tuesday, January 17, 2012 3:29 PM Subject: Re: Re: Response from Family regarding HFA/Asperger Syndrome

hi , you are in a tough situation. Asperger's can be very

isolating. Even in the "nicest"

of families--- my family wasn't vocal about

giving negative feedback or suggestions, but we didn't get invited

over to play either.....

One thing I found concerning other people's attitudes, was this:

other people pick up on my attitude---

if I'm negative, critical or show embarrassment about my child in

public, other people quickly mimic

my attitude (even if it's subtle). If I'm positive, affectionate

and matter of fact about my child's

Asperger's, people pick up on that and their behavior towards my

child sometimes improves.

This isn't

ALWAYS the case. But I found it to be especially true with aunt/

grandmothers, and other people

who might feel entitled to put their two cents worth in.

Good luck, and hang in there!

,

As wrong as this may be, I love

to use sarcasm. Other times

I use grace, I have been telling those close to us

we all need to be on the

same page. When that doesn’t work I’ve tried guilt.

I am very careful now that

she is getting older since I worry about what is

said around her.

From:

To:

autism-aspergers

Sent:

Tuesday, January 17, 2012 12:12 PM

Subject:

Re: Response from Family

regarding HFA/Asperger Syndrome

, I'm sorry to hear you are having

difficulties too - I guess I should just

expect it and when people are actually

understanding of the situation, I'll just be

pleasantly surprised. Ack, lol

>

> You said “Ugh...am I

> reading too much into these responses?

lol â€

> We are kind of still going through this

now and it’s been almost two years Ella

> is now four. My side … their (insert your

own word, I’m keeping it rated G) my

> mother thinks I should give her Benadryl

to “calm†her down (she doesn’t have

> ADD or ADHD a specialist dx’ed her with

Asperger’s). Obviously we don’t agree

> with the Benadryl. We have no support

from my side. My husband’s parents think

> all she needs is a wooden spoon to shape

her up, we don’t agree with that

> either. My family lives far away and we

live in the same town as my in-laws. It’s

> called making excuses, denial or someone

wants to blame someone else. We are

> getting thicker skin to it. It just

bothers me the most because those attitudes

> from others will eventually hurt Ella in

the long run.

>

>

>

>

> ________________________________

>

> To: autism-aspergers

> Sent: Monday, January 16, 2012 9:28 AM

> Subject: RE: Response

from Family regarding HFA/Asperger Syndrome

>

>

>

> Okay, so I know R hasn't been officially

dxed yet but when I'm discussing why he's

being evaluated, the only people that seem to

"get it" are my mom and my husband. Think I'm

going to have a hard time getting folks to

understand what HFA/Asperger syndrome is and

how the behaviors manifest.

>

> A comment from a family member, after

explaining he's been placed in a social

adjustment class for hitting and biting -

After explaining that we think he's "on the

spectrum" and are having him evaluated

further:

>

> "R seems like such a happy, normal, sweet

little boy it's hard to believe that he has

that many struggles."

>

> My in-laws aren't saying anything about

his issues at all - example: when I let them

watch a video of R meticulously lining up

markers so they are in same color pattern (we

have 2 sets) but mirrored while he's counting

by twos, the response was, "well he seems to

have math concepts down." He's 5...

>

> Ugh...am I reading too much into these

responses? lol

>

[Guest guest]

Well, in my experience I only give out the information about my child's behavior

on a need to know basis.

I usually say he has a social delay and we are doing things to work on it and

leave it at that.

I am the type who doesn't want my child to be labeled, so I am very vague about

the actual diagnosis, and haven't told my in-laws what it is called, as I know

they would become obsessed and burn up the google search. As I feel once that

label is out there, people will only see her as that. I almost treat it like a

piece of health information. For instance, I wouldn't tell everyone I meet that

I had a hang-nail and I don't feel that I should broadcast this sensitive

information to people, including family.

I think you have to judge for yourself, but it's very hard to take it back once

you have let the information out.

Good luck to you!

Kari

>

> Okay, so I know R hasn't been officially dxed yet but when I'm discussing why

he's being evaluated, the only people that seem to " get it " are my mom and my

husband. Think I'm going to have a hard time getting folks to understand what

HFA/Asperger syndrome is and how the behaviors manifest.

>

> A comment from a family member, after explaining he's been placed in a social

adjustment class for hitting and biting - After explaining that we think he's

" on the spectrum " and are having him evaluated further:

>

> " R seems like such a happy, normal, sweet little boy it's hard to believe that

he has that many struggles. "

>

> My in-laws aren't saying anything about his issues at all - example: when I

let them watch a video of R meticulously lining up markers so they are in same

color pattern (we have 2 sets) but mirrored while he's counting by twos, the

response was, " well he seems to have math concepts down. " He's 5...

>

> Ugh...am I reading too much into these responses? lol

>