Re: Am I over-reacting here?

[Guest guest]

Seems to me this Dr made a positive situation negative for nothing. If you son wanted you to see the story why on earth didn't he just let you see it? If your son is anything like mine, waiting isn't a strong point, 2 weeks would have been torture. I don't think the Dr handled this well at all. I don't understand how showing you a story would have compromised the test. Doesn't sound like the Dr has developed a sensitive way of working with AS kids.

From: lovetoeatchocolatecake <doyourecycle@...>Subject: ( ) Am I over-reacting here? Date: Tuesday, 22 September, 2009, 12:41 AM

I'm tired and need an outsiders perspective. My son went for a LONG neurological eval. today. At the end my son was very excited about a story that he had written. (he's not a writer and doesn't like to write.) He asked if I could see it and the dr. said he could see it in about 2 weeks when I come back. My son pushed that it was a great story and pleaded for me to see it. I asked if I could just have a copy of it and dr. said oh, it would be unethical for it to be "out there for anyone to see--it could compromise the test if it was just out there." I was alittle dumbstruck and meanwhile, my son ran outside the office and cried in the corner. SO, then the dr. says I'll talk to him. I stopped him for a minute as I just didn't have the confidence that he would make the situation better. He didn't and proved my point. He brought the paper out for me to see only, and I showed my son I saw it and then gave it back to the dr. My son wouldn't leave, and it

dragged out. I was finally able to coax my son out eventually.This IS a new dr. and he does seem to either lack confidence or is just a normally timid or meek kind of guy. Either way, you see I'm not impressed with him.Have you ever heard of a dr.s office not letting a photocopied black and while pix, "go on the outside?" The top of the paper was the pix the bottom portion was my son's essay. Did the doc handle this poorly or am I over-reacting? Be honest, please.

[Guest guest]

Therapists that just do testing for the most part (not all of them I don't mean

to generalize) are not good with kids. We had a Phd

nueropyscholoist from NYU (famed New York University Asperger Insititue) meet

our daughter

and when my daughter freaked out this women use physical force with her. It was

the craziest experience of our lives. This is NYU Asperger Institute!!!!

Everything this women did escalated my daughter.

I can only reflect on this with calmness because we know work with

Yale University and a psychistrist that are both extremely

kind and understanding. So I can put that in the past.

I assure you you will get better at telling people what your son needs

after experiences like this.

Some of these people understand kids so well like our present

pyschiatrist but others do not.

So many therapist though do not understand AS kids. This is

my experience. I saw an AS expert in the spring that suggested

I use severe punishments to get my daughter to take medication

even if I had to hold her down. WHATTTTTT!!!!! This was such

very bad advice. He considers himself an expert in child behavior?????

Oh my gosh I am blessed so blessed to find a behaviorist

at Yale. We got her on the medication by taking very small

steps with very small rewards.

Tell people he needs lots of positive reinforcement,

no surprises and a very flexible person. let them know

he has a problem with " no " that he fixates on an idea and needs

people to be flexable. People will tell you if they

want to help. If they don't you will feel confident that

they are weak in these skills.

I have met so many therapist over the years very few understand

AS kids even the ones that say they do. Maybe it is one in

30 therapist that say they understand anxiety and asperger really do.

I have not worked with very many ABA therapists. Perhaps it is

better in this field.

Pam

[Guest guest]

lol. I think this is a case where they know " theory " but do not know

what to do when that theory doesn't work. And how often, for us, does

the theory not work? ALL THE TIME!! I have spent countless moments of

my life listening to people say things like, " I know he has autism

but.... " and then go on to complain about something he is doing that is

autistic or because he has autism. They don't try to address it in a

logical way. They just want it to stop, make it stop. Well, gee, I

can't remember that " removing autism for your convenience " spell. It

just seems to me that they know the " book " part about autism but do not

have an understanding of what it looks like off the page, in real life.

I was at the doc's recently with my 12 yo ds (hfa) and we saw a new

person. It always happens that they try to fix him. I don't even know

why. I mean, his regular dev. doc does not do this. But every other

doc we've seen does this. So we get the lecture on how to get him to

sleep at night/all night. The usual, " bedtime routine, no tv, no

computer games, yadda yadda yadda... " I felt my eyes glaze over. If

only our lives were that simple, yes? A routine, gee, hadn't thought

of that in the last 12 years. lol. Ugh.

What got me the most (and always does!) was that these folks never ask

us what we've tried before they start telling u

s what to do. And

that's when I started thinking that they are really just repeating what

they've read in books and studies on the subject with no actual

practice. Or if they have practiced the techniques, it's been

practiced on typical kids. Or once on their own well behaved kid.

lol. She ordered him to read a book before bed time too. He told her

he doesn't read for fun. She repeated that he should read before bed.

I just want to scream sometimes. But I don't. I smile, say " thank

you " and leave. ugh.

Roxanna

" The only thing necessary for the triumph of evil is for good men to do

nothing. " E. Burke

( ) Re: Am I over-reacting here?

Therapists that just do testing for the most part (not all of them I

don't mean to generalize) are not good with kids. We had a Phd

nueropyscholoist from NYU (famed New York University Asperger

Insititue) meet our daughter

and when my daughter freaked out this women use physical force with

her. It was the craziest experience of our lives. This is NYU Asperger

Institute!!!! Everything this women did escalated my daughter.

I can only reflect on this with calmness because we know work with

Yale University and a psychistrist that are both extremely

kind and understanding. So I can put that in the past.

I assure you you will get better at telling people what your son needs

after experiences like this.

Some of these people understand kids so well like our present

pyschiatrist but others do not.

So many therapist though do not understand AS kids. This is

my experience. I saw an AS expert in the spring that suggested

I use severe punishments to get my daughter to take medication

even if I had to hold her down. WHATTTTTT!!!!! This was such

very bad advice. He considers himself an expert in child behavior?????

Oh my gosh I am blessed so blessed to find a behaviorist

at Yale. We got her on the medication by taking very small

steps with very small rewards.

Tell people he needs lots of positive reinforcement,

no surprises and a very flexible person. let them know

he has a problem with " no " that he fixates on an idea and needs

people to be flexable. People will tell you if they

want to help. If they don't you will feel confident that

they are weak in these skills.

I have met so many therapist over the years very few understand

AS kids even the ones that say they do. Maybe it is one in

30 therapist that say they understand anxiety and asperger really do.

I have not worked with very many ABA therapists. Perhaps it is

=0

A

better in this field.

Pam

[Guest guest]

Oh, that is too funny...(in a special way)...I loved your son's line..."I don't read for fun"....that is great! My son is exactly the same way!!!!

Janice Rushen

"I will try to be open to all avenues of wisdom and hope"

From: Roxanna <MadIdeas@...>Subject: Re: ( ) Re: Am I over-reacting here? Date: Thursday, October 1, 2009, 9:22 AM

lol. I think this is a case where they know "theory" but do not know what to do when that theory doesn't work. And how often, for us, does the theory not work? ALL THE TIME!! I have spent countless moments of my life listening to people say things like, "I know he has autism but...." and then go on to complain about something he is doing that is autistic or because he has autism. They don't try to address it in a logical way. They just want it to stop, make it stop. Well, gee, I can't remember that "removing autism for your convenience" spell. It just seems to me that they know the "book" part about autism but do not have an understanding of what it looks like off the page, in real life. I was at the doc's recently with my 12 yo ds (hfa) and we saw a new person. It always happens that they try to fix him. I don't even know why. I mean, his regular dev. doc does not do this. But every other doc

we've seen does this. So we get the lecture on how to get him to sleep at night/all night. The usual, "bedtime routine, no tv, no computer games, yadda yadda yadda..." I felt my eyes glaze over. If only our lives were that simple, yes? A routine, gee, hadn't thought of that in the last 12 years. lol. Ugh.What got me the most (and always does!) was that these folks never ask us what we've tried before they start telling us what to do. And that's when I started thinking that they are really just repeating what they've read in books and studies on the subject with no actual practice. Or if they have practiced the techniques, it's been practiced on typical kids. Or once on their own well behaved kid. lol. She ordered him to read a book before bed time too. He told her he doesn't read for fun. She repeated that he should read before bed. I just want to scream sometimes. But I don't. I smile, say

"thank you" and leave. ugh.Roxanna"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke ( ) Re: Am I over-reacting here?Therapists that just do testing for the most part (not all of them I don't mean to generalize) are not good with kids. We had a Phdnueropyscholoist from NYU (famed New York University Asperger Insititue) meet our daughterand when my daughter

freaked out this women use physical force with her. It was the craziest experience of our lives. This is NYU Asperger Institute!!! ! Everything this women did escalated my daughter.I can only reflect on this with calmness because we know work withYale University and a psychistrist that are both extremelykind and understanding. So I can put that in the past.I assure you you will get better at telling people what your son needsafter experiences like this.Some of these people understand kids so well like our presentpyschiatrist but others do not.So many therapist though do not understand AS kids. This ismy experience. I saw an AS expert in the spring that suggestedI use severe punishments to get my daughter to take medicationeven if I had to hold her down. WHATTTTTT!!! !! This was suchvery bad advice. He considers himself an expert in child behavior????

?Oh my gosh I am blessed so blessed to find a behavioristat Yale. We got her on the medication by taking very smallsteps with very small rewards.Tell people he needs lots of positive reinforcement,no surprises and a very flexible person. let them knowhe has a problem with "no" that he fixates on an idea and needspeople to be flexable. People will tell you if theywant to help. If they don't you will feel confident thatthey are weak in these skills.I have met so many therapist over the years very few understandAS kids even the ones that say they do. Maybe it is one in30 therapist that say they understand anxiety and asperger really do.I have not worked with very many ABA therapists. Perhaps it is=0Abetter in this field.Pam

[Guest guest]

My mother in law, who just doesn't believe our son has Aspergers, when she hears he is in our bed just about everynight she offers "advice" and we go oh yeah, never thought of that! I don't think she understood what we meant when we said he shouts, she said all children shout, until she witnessed it. lol. She is very old school and tells he he is too old to behave the way he does, I don't think she gets that saying that really hurts him. I'm sure she thinks if she had him for a couple of days she could "straighten him out". Argh

From: Roxanna <MadIdeasaol (DOT) com>Subject: Re: ( ) Re: Am I over-reacting here? Date: Thursday, October 1, 2009, 9:22 AM

lol. I think this is a case where they know "theory" but do not know what to do when that theory doesn't work. And how often, for us, does the theory not work? ALL THE TIME!! I have spent countless moments of my life listening to people say things like, "I know he has autism but...." and then go on to complain about something he is doing that is autistic or because he has autism. They don't try to address it in a logical way. They just want it to stop, make it stop. Well, gee, I can't remember that "removing autism for your convenience" spell. It just seems to me that they know the "book" part about autism but do not have an understanding of what it looks like off the page, in real life. I was at the doc's recently with my 12 yo ds (hfa) and we saw a new person. It always happens that they try to fix him. I don't even know why. I mean, his regular dev. doc does not do this. But every other doc

we've seen does this. So we get the lecture on how to get him to sleep at night/all night. The usual, "bedtime routine, no tv, no computer games, yadda yadda yadda..." I felt my eyes glaze over. If only our lives were that simple, yes? A routine, gee, hadn't thought of that in the last 12 years. lol. Ugh.What got me the most (and always does!) was that these folks never ask us what we've tried before they start telling us what to do. And that's when I started thinking that they are really just repeating what they've read in books and studies on the subject with no actual practice. Or if they have practiced the techniques, it's been practiced on typical kids. Or once on their own well behaved kid. lol. She ordered him to read a book before bed time too. He told her he doesn't read for fun. She repeated that he should read before bed. I just want to scream sometimes. But I don't. I smile, say

"thank you" and leave. ugh.Roxanna"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke ( ) Re: Am I over-reacting here?Therapists that just do testing for the most part (not all of them I don't mean to generalize) are not good with kids. We had a Phdnueropyscholoist from NYU (famed New York University Asperger Insititue) meet our daughterand when my daughter freaked out this women use physical force with her. It was the craziest experience of our

lives. This is NYU Asperger Institute!!! ! Everything this women did escalated my daughter.I can only reflect on this with calmness because we know work withYale University and a psychistrist that are both extremelykind and understanding. So I can put that in the past.I assure you you will get better at telling people what your son needsafter experiences like this.Some of these people understand kids so well like our presentpyschiatrist but others do not.So many therapist though do not understand AS kids. This ismy experience. I saw an AS expert in the spring that suggestedI use severe punishments to get my daughter to take medicationeven if I had to hold her down. WHATTTTTT!!! !! This was suchvery bad advice. He considers himself an expert in child behavior???? ?Oh my gosh I am blessed so blessed to find a behavioristat Yale. We got her

on the medication by taking very smallsteps with very small rewards.Tell people he needs lots of positive reinforcement,no surprises and a very flexible person. let them knowhe has a problem with "no" that he fixates on an idea and needspeople to be flexable. People will tell you if theywant to help. If they don't you will feel confident thatthey are weak in these skills.I have met so many therapist over the years very few understandAS kids even the ones that say they do. Maybe it is one in30 therapist that say they understand anxiety and asperger really do.I have not worked with very many ABA therapists. Perhaps it is=0Abetter in this field.Pam

[Guest guest]

Oh, don't you just love the advice that other's give you? My mom does the same thing, and her defense is "i've raised 3 kids".. Oh and I love when "friends" try to put their input in, saying that he's just a typical boy. Yeah right! haha. Pretty sure typical boys don't scream at the top of their lungs at school for up to a half hour at a time.

From: Lorraine son <lorrainedavidson12@...> Sent: Friday, October 2, 2009 7:03:36 AMSubject: Re: ( ) Re: Am I over-reacting here?

My mother in law, who just doesn't believe our son has Aspergers, when she hears he is in our bed just about everynight she offers "advice" and we go oh yeah, never thought of that! I don't think she understood what we meant when we said he shouts, she said all children shout, until she witnessed it. lol. She is very old school and tells he he is too old to behave the way he does, I don't think she gets that saying that really hurts him. I'm sure she thinks if she had him for a couple of days she could "straighten him out". Argh

From: Roxanna <MadIdeasaol (DOT) com>Subject: Re: ( ) Re: Am I over-reacting here? Date: Thursday, October 1, 2009, 9:22 AM

lol. I think this is a case where they know "theory" but do not know what to do when that theory doesn't work. And how often, for us, does the theory not work? ALL THE TIME!! I have spent countless moments of my life listening to people say things like, "I know he has autism but...." and then go on to complain about something he is doing that is autistic or because he has autism. They don't try to address it in a logical way. They just want it to stop, make it stop. Well, gee, I can't remember that "removing autism for your convenience" spell. It just seems to me that they know the "book" part about autism but do not have an understanding of what it looks like off the page, in real life. I was at the doc's recently with my 12 yo ds (hfa) and we saw a new person. It always happens that they try to fix him. I don't even know why. I mean, his regular dev. doc does not do this. But every other doc

we've seen does this. So we get the lecture on how to get him to sleep at night/all night. The usual, "bedtime routine, no tv, no computer games, yadda yadda yadda..." I felt my eyes glaze over. If only our lives were that simple, yes? A routine, gee, hadn't thought of that in the last 12 years. lol. Ugh.What got me the most (and always does!) was that these folks never ask us what we've tried before they start telling us what to do. And that's when I started thinking that they are really just repeating what they've read in books and studies on the subject with no actual practice. Or if they have practiced the techniques, it's been practiced on typical kids. Or once on their own well behaved kid. lol. She ordered him to read a book before bed time too. He told her he doesn't read for fun. She repeated that he should read before bed. I just want to scream sometimes. But I don't. I smile, say

"thank you" and leave. ugh.Roxanna"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke ( ) Re: Am I over-reacting here?Therapists that just do testing for the most part (not all of them I don't mean to generalize) are not good with kids. We had a Phdnueropyscholoist from NYU (famed New York University Asperger Insititue) meet our daughterand when my daughter freaked out this women use physical force with her. It was the craziest experience of our

lives. This is NYU Asperger Institute!!! ! Everything this women did escalated my daughter.I can only reflect on this with calmness because we know work withYale University and a psychistrist that are both extremelykind and understanding. So I can put that in the past.I assure you you will get better at telling people what your son needsafter experiences like this.Some of these people understand kids so well like our presentpyschiatrist but others do not.So many therapist though do not understand AS kids. This ismy experience. I saw an AS expert in the spring that suggestedI use severe punishments to get my daughter to take medicationeven if I had to hold her down. WHATTTTTT!!! !! This was suchvery bad advice. He considers himself an expert in child behavior???? ?Oh my gosh I am blessed so blessed to find a behavioristat Yale. We got her

on the medication by taking very smallsteps with very small rewards.Tell people he needs lots of positive reinforcement,no surprises and a very flexible person. let them knowhe has a problem with "no" that he fixates on an idea and needspeople to be flexable. People will tell you if theywant to help. If they don't you will feel confident thatthey are weak in these skills.I have met so many therapist over the years very few understandAS kids even the ones that say they do. Maybe it is one in30 therapist that say they understand anxiety and asperger really do.I have not worked with very many ABA therapists. Perhaps it is=0Abetter in this field.Pam

[Guest guest]

There's a line in the film Snow Cake that totally cracks me up but it totally

illustrates the thing you're describing. " Oh I know all about autism, I saw

that film. " The woman who says it is trying to be kind and understanding, but

people who think they know all about it when they don't can be so frustrating!

" He's a smart boy, why doesn't he understand the rules? " Um, well, maybe he

understands but doesn't have the impulse control to follow it. Maybe he doesn't

understand the point of the rule. Maybe something ELSE is interfering like his

inability to block out sensory stimuli. Maybe someone said something that hurt

his feelings, something that wouldn't NORMALLY hurt anyone's feelings but in the

logic of his asperger brain it HURTS! GAA! " Oh, there's nothing wrong with him

that a good spanking wouldn't fix! Every kid needs to be spanked some time. I

know what's wrong with him, it's his MOTHER! " Oh the urge to scream obscenities

at these people is overwhelming!

Sometimes when people get it in their heads that they think they know how to

handle my kid I let them give it a try. Yes, they do prove the point quite

eloquently. going completely apeshit and tearing apart a room trying to

destroy things (trying to tear a baby gate off the wall and nearly succeeding at

age 3.5 is a good example) screaming incessantly is a very good natural

consequence to people who believe they know what they are doing. is better

at using words, now, so he hasn't tried to destroy things as often and he cries

now more than he screams but now that I've had 9.5 years of experience and seem

to exude what I think must be an almost menacing confidence with him people

don't seem to mess with me.

Occasionally people still try to help me with my daughter, but she is more

perplexing to me because she is more complicated. is very logical and once

he's past a thing, he's well past it. He doesn't try to negotiate beyond a

certain point. My daughter pushes the limits, reaches to the edge of

boundaries all the time. just isn't like that with me.

Miriam

>

> lol. I think this is a case where they know " theory " but do not know

> what to do when that theory doesn't work. And how often, for us, does

> the theory not work? ALL THE TIME!! I have spent countless moments of

> my life listening to people say things like, " I know he has autism

> but.... " and then go on to complain about something he is doing that is

> autistic or because he has autism. They don't try to address it in a

> logical way. They just want it to stop, make it stop. Well, gee, I

> can't remember that " removing autism for your convenience " spell. It

> just seems to me that they know the " book " part about autism but do not

> have an understanding of what it looks like off the page, in real life.

>

>

> I was at the doc's recently with my 12 yo ds (hfa) and we saw a new

> person. It always happens that they try to fix him. I don't even know

> why. I mean, his regular dev. doc does not do this. But every other

> doc we've seen does this. So we get the lecture on how to get him to

> sleep at night/all night. The usual, " bedtime routine, no tv, no

> computer games, yadda yadda yadda... " I felt my eyes glaze over. If

> only our lives were that simple, yes? A routine, gee, hadn't thought

> of that in the last 12 years. lol. Ugh.

>

> What got me the most (and always does!) was that these folks never ask

> us what we've tried before they start telling u

> s what to do. And

> that's when I started thinking that they are really just repeating what

> they've read in books and studies on the subject with no actual

> practice. Or if they have practiced the techniques, it's been

> practiced on typical kids. Or once on their own well behaved kid.

> lol. She ordered him to read a book before bed time too. He told her

> he doesn't read for fun. She repeated that he should read before bed.

> I just want to scream sometimes. But I don't. I smile, say " thank

> you " and leave. ugh.

>

> Roxanna

>