Re: Tell me this gets better....

[Guest guest]

My son is 11 now and has been diagnosed with AS since he was 6 or 7. In my sons

case it has gotten better in some ways. He has learned some self control and

will calm down quicker and recognizes and apologizes for his behavior

spontaniously. On the other hand, as he has gotten older he keeps finding new

and creative ways to drive me crazy.

Vickie

>

> Our AS son just turned 7, heading into 2nd grade. This summer has been

somewhat brutal - I think he's overall sick of being home, feeling like he's

being told what to do all the time. If he'd listen the first time around, we

wouldn't have to keep telling him what to do =)

>

> He shows all the textbook behaviors with respect to countercontrol and anger

management....both are tough for him. He can get upset over relatively small

issues, and has become verbally abusive when he feels angry/upset/controlled

etc....

>

> Speaking from your experience, will he learn to better manage his emotions as

he gets older?

>

[Guest guest]

My son was diagnosed at age 3. Age 6/7 was absolutely the worst. That is

because he was in a terrible school so it isn't entirely an age thing. " He's a

smart boy, he should be able to understand the rules! " Understand, yes, control

his impulses, NO WAY.

is 12 now and is much better. He still can't really control a lot of

verbal stuff, but he doesn't hit, kick or bite at school now and hardly ever at

home. Siblings are a whole different situation. Sometimes my daughter (age 9)

LIKES to annoy people. Sometimes she's just in the wrong place at the wrong

time when is losing a game. Anyway, mostly he's doing extremely well. I'm

seeing him surpass his dad in some social skill areas. I'm seeing him help

OTHER kids with AS through social skills. That one really floored me, but I saw

him do it with my very own eyes!

Homework is less a struggle now than before.

For younger kids making picture schedules and having a very set routine can help

them. This might work for your child. For picture cards go to do2learn.com and

you can subscribe to their make-a-schedule for about $30/year. It is about as

good as boardmaker and costs MUCH less. Boardmaker is about $600 in one lump

sum. I used make-a-schedule for about 3-4 years. That's $90-100 spread out

over time and you can just NOT renew whenever you don't want it any more. There

is a book by Batts that you can get at Amazon.com called Road to

Independence. It has great suggestions in it. English is not her first

language so you might find some odd phrases or incorrect grammar that someone

didn't catch, but it's not enough to make it in any way difficult to understand.

Just little glitches here and there. She has a teenaged moderately autistic son

who is doing extremely well. She started her own school near where I used to

live in TX. Prior to this she worked for our school district and helped us get

the right services for my son. She really knows her stuff.

The book is small and not terribly expensive.

Miriam

>

> Our AS son just turned 7, heading into 2nd grade. This summer has been

somewhat brutal - I think he's overall sick of being home, feeling like he's

being told what to do all the time. If he'd listen the first time around, we

wouldn't have to keep telling him what to do =)

>

> He shows all the textbook behaviors with respect to countercontrol and anger

management....both are tough for him. He can get upset over relatively small

issues, and has become verbally abusive when he feels angry/upset/controlled

etc....

>

> Speaking from your experience, will he learn to better manage his emotions as

he gets older?

>

[Guest guest]

My grandson was diagnosed with AS at the age of 12. He has all the symptoms - and I mean ALL. Then at age 15 they decided he doesn't have AS after all. He has what they call Schitzo-afftective Disorder. My daughter believes this new diagnosis but I have a problem with it. He does have some of the signs and perhaps he has a touch, but what about the AS symptoms? He has been tested 3 times now and the 4th wouldn't be covered by the insurance. Has anyone had this diagnosis happen? What can a grandmother do besides stand by and watch???

Helpless Grandmother

From: Miriam <callis4773@...> Sent: Thursday, August 13, 2009 7:15:46 AMSubject: ( ) Re: Tell me this gets better....

My son was diagnosed at age 3. Age 6/7 was absolutely the worst. That is because he was in a terrible school so it isn't entirely an age thing. "He's a smart boy, he should be able to understand the rules!" Understand, yes, control his impulses, NO WAY. is 12 now and is much better. He still can't really control a lot of verbal stuff, but he doesn't hit, kick or bite at school now and hardly ever at home. Siblings are a whole different situation. Sometimes my daughter (age 9) LIKES to annoy people. Sometimes she's just in the wrong place at the wrong time when is losing a game. Anyway, mostly he's doing extremely well. I'm seeing him surpass his dad in some social skill areas. I'm seeing him help OTHER kids with AS through social skills. That one really floored me, but I saw him do it with my very own eyes!Homework is less a struggle now than before.For younger kids making picture schedules and having a very set

routine can help them. This might work for your child. For picture cards go to do2learn.com and you can subscribe to their make-a-schedule for about $30/year. It is about as good as boardmaker and costs MUCH less. Boardmaker is about $600 in one lump sum. I used make-a-schedule for about 3-4 years. That's $90-100 spread out over time and you can just NOT renew whenever you don't want it any more. There is a book by Batts that you can get at Amazon.com called Road to Independence. It has great suggestions in it. English is not her first language so you might find some odd phrases or incorrect grammar that someone didn't catch, but it's not enough to make it in any way difficult to understand. Just little glitches here and there. She has a teenaged moderately autistic son who is doing extremely well. She started her own school near where I used to live

in TX. Prior to this she worked for our school district and helped us get the right services for my son. She really knows her stuff.The book is small and not terribly expensive.Miriam>> Our AS son just turned 7, heading into 2nd grade. This summer has been somewhat brutal - I think he's overall sick of being home, feeling like he's being told what to do all the time. If he'd listen the first time around, we wouldn't have to keep telling him what to do =)> > He shows all the textbook behaviors with respect to countercontrol and anger management.. ..both are tough for him. He can get upset over relatively small issues, and has become verbally abusive when he feels angry/upset/ controlled

etc....> > Speaking from your experience, will he learn to better manage his emotions as he gets older?>

[Guest guest]

I'm sure this is frustrating to you. I can add just a little input. My

husbands bio-father (who he did not grow up with) had Schitzo-afftective

Disorder) I never met him but I spoke to him on the phone a couple of times.

There is definitly a level of social interaction problem that is not completely

different than AS. I also have a friend who has a child of similar age to your

grandson that was diagnosed when he was quite young as AS. Now he is about 16

and for the last year or so his psychiatrist believes that he is also a paranoid

schitzophric. I believe that typically schitzoprenia begins to shop up in the

late teens to twenties. I don't know if the two diagnosis can both be valid or

if one is replacing the other. I know that the diagnositic criteria for

Schitzo-afftective Disorder is pretty specific and requires him to have had both

a schitzophrenic episode and a manic or depressive episode.

Vickie

> >

> > Our AS son just turned 7, heading into 2nd grade. This summer has been

somewhat brutal - I think he's overall sick of being home, feeling like he's

being told what to do all the time. If he'd listen the first time around, we

wouldn't have to keep telling him what to do =)

> >

> > He shows all the textbook behaviors with respect to countercontrol and anger

management.. ..both are tough for him. He can get upset over relatively small

issues, and has become verbally abusive when he feels angry/upset/ controlled

etc....

> >

> > Speaking from your experience, will he learn to better manage his emotions

as he gets older?

> >

>

>

> __._,_..___

> Messages in this topic (4) Reply (via web post) | Start a new topic

> Messages

>

[Guest guest]

Thank you Vickie. This is very frustrating for me being the Grandmother and I really don't see the Schitzo-affective Disorder in him. He has not had a drastic depressive episode and his temper tantrums seem more like a teenage boy lashing out than anything. I haven't seen him do anything that any other 15 year old teenage boy doesn't do. I am afraid this new diagnosis is completely off base and there is nothing I can do about it.

From: Vickie Boehnlein <baneline1@...> Sent: Thursday, August 13, 2009 12:03:44 PMSubject: ( ) Re: Tell me this gets better....

I'm sure this is frustrating to you. I can add just a little input. My husbands bio-father (who he did not grow up with) had Schitzo-afftective Disorder) I never met him but I spoke to him on the phone a couple of times. There is definitly a level of social interaction problem that is not completely different than AS. I also have a friend who has a child of similar age to your grandson that was diagnosed when he was quite young as AS. Now he is about 16 and for the last year or so his psychiatrist believes that he is also a paranoid schitzophric. I believe that typically schitzoprenia begins to shop up in the late teens to twenties. I don't know if the two diagnosis can both be valid or if one is replacing the other. I know that the diagnositic criteria for Schitzo-afftective Disorder is pretty specific and requires him to have had both a schitzophrenic episode and a manic or depressive episode. Vickie> >> > Our AS son just turned 7, heading into 2nd grade. This summer has been somewhat brutal - I think he's overall sick of being home, feeling like he's being told what to do all the time. If he'd listen the first time around, we wouldn't have to keep telling him what to do

=)> > > > He shows all the textbook behaviors with respect to countercontrol and anger management.. ..both are tough for him. He can get upset over relatively small issues, and has become verbally abusive when he feels angry/upset/ controlled etc....> > > > Speaking from your experience, will he learn to better manage his emotions as he gets older?> >> > > __._,_..___> Messages in this topic (4) Reply (via web post) | Start a new topic > Messages >

[Guest guest]

>

> My grandson was diagnosed with AS at the age of 12.� He has all the symptoms

- and I mean ALL.� Then at age 15 they decided he doesn't have AS after

all.� He has what they call Schitzo-afftective Disorder.� My daughter

believes this new diagnosis but I have a problem with it.� He does have some

of the signs and perhaps he has a touch, but what about the AS symptoms?� He

has been tested 3 times now and the 4th wouldn't be covered by the insurance.�

Has anyone had this diagnosis happen?� What can a grandmother do besides stand

by and watch???

First of all, who is " they " that decided this? I'm guessing a psychiatrist?

Some psychiatrists seem to prefer personality disorders over autism spectrum

disorders; I imagine it has to do with their training.

A psychiatrist we saw tried to change my son's diagnosis to a personality

disorder--can't remember exactly which one. I looked it up, ignored her thought

and moved on. There really is no law that says one has to accept the dx of a

particular professional. I just never shared that particular person's dx with

anyone other than my husband after we both agreed she was wrong. Our son was

dx'd by autism specialists 3 times with extensive evaluations (he is 14 now); in

all due fairness, he had only had one of these evaluations when she saw him.

The label doesn't really matter as long as the needs are being met. Is he

getting services from his school? Are they okay? If the school buys the dx

change, this would mean some big changes in my state--but I'm not sure it is

like that everywhere. I would talk to your daughter some more before you panic,

she may change her mind or the dx change may not change his treatment much. Hard

to say on so little information.

[Guest guest]

My daughter is 11 and always had meltdowns over transitions.

She could better control herself if life was very predictable.

As she got older I had a harder time making life safe for

her. Because she didn't outgrow it and I felt there was

no reasoning with her in therapy, we turned to medication.

I can see it has really

helped improve her mood and be a little more flexible.

I don't know if the medication she is on will be enough

to treat her ever presistent school anxiety.

But I am thankful that the outbursts have been reduced.

Wow! What she went thru.

We are also using a positive behavior management plan.

The key component is increasing positive reinforcement

and making the punishment to some things minor;

for talking back to me I say you don't earn a sticker for talking to me like

that and she says " I don't care about your sticker "

and I say nothing I leave it at that. Later in the evening

I will go over the day and mostly talk about her cooperation.

I don't bring up again the incident. It is not a grading system.

The behaviorist said " You don't change behavior with lectures or criticism " " You

change it with training and shaping and reinforcing what you want "

It is more complicated than that because for not taking her medication I have a

consequence/punishment but she knows it. There is no surprise. No med no TV or

computer or any fun activity.

Everything is on hold. But there is no arguing about it.

I don't think behavior management alone would have reduced

her oppositional behavior without medication. She was too

easily outraged.

Take care. I cringe at the thought of all the outbursts.

I don't know how a parent figures out if it is time for medication

trials. I now am so sorry we didn't try this in

first grade instead of having her suffer until 6th grade.

We were so afraid ourselves of medication. Outbursts didn't seem like

amxiety or depression. We hoped the next year we would have a better

plan at school or that I would find better summer classes or

I would structure life more.

We were just too afraid of side effects. What we finally did was

started at 10mg of zoloft and are taking it so slow in increasing it. We feel we

have control over the adverse effects and can stop

the increases if it affects her negatively.

Pam

-- In , " obiwaugh " <obiwaugh@...> wrote:

>

> Our AS son just turned 7, heading into 2nd grade. This summer has been

somewhat brutal - I think he's overall sick of being home, feeling like he's

being told what to do all the time. If he'd listen the first time around, we

wouldn't have to keep telling him what to do =)

>

> He shows all the textbook behaviors with respect to countercontrol and anger

management....both are tough for him. He can get upset over relatively small

issues, and has become verbally abusive when he feels angry/upset/controlled

etc....

>

> Speaking from your experience, will he learn to better manage his emotions as

he gets older?

>

[Guest guest]

Mine is 7 also and he also has tics and they are verbal too and you can' imagine

how he loves tp squeal ang scream and annoy us all. Almost defiant. This summer

has been so bad for meltdowns and anger. We were trying to treat PANDAS

inflammation with steroids and his anxiety and irritabiliy is throught the

roof.How are others dealing with the rage?

>

> Our AS son just turned 7, heading into 2nd grade. This summer has been

somewhat brutal - I think he's overall sick of being home, feeling like he's

being told what to do all the time. If he'd listen the first time around, we

wouldn't have to keep telling him what to do =)

>

> He shows all the textbook behaviors with respect to countercontrol and anger

management....both are tough for him. He can get upset over relatively small

issues, and has become verbally abusive when he feels angry/upset/controlled

etc....

>

> Speaking from your experience, will he learn to better manage his emotions as

he gets older?

>

[Guest guest]

Thanks to all...hearing other peoples' stories provides perspective, and a sense

that we're not alone.

> >

> > Our AS son just turned 7, heading into 2nd grade. This summer has been

somewhat brutal - I think he's overall sick of being home, feeling like he's

being told what to do all the time. If he'd listen the first time around, we

wouldn't have to keep telling him what to do =)

> >

> > He shows all the textbook behaviors with respect to countercontrol and anger

management....both are tough for him. He can get upset over relatively small

issues, and has become verbally abusive when he feels angry/upset/controlled

etc....

> >

> > Speaking from your experience, will he learn to better manage his emotions

as he gets older?

> >

>

[Guest guest]

Sherry,

(Just because I'm curious)What is the schitzophrenic element that they are using

for this diagnosis? The DSM-IV criteria says:

Schizoaffective Disorder is characterized by the presence of one of the

following:

•Major Depressive Episode (must include depressed mood)

•Manic Episode

•Mixed Episode

As well as the presence of at least two of the following symptoms, for at least

one month:

•Delusions

•Hallucinations

•Disorganized speech (e.g., frequent derailment or incoherence)

•Grossly disorganized or catatonic behavior

•Negative symptoms (e.g., affective flattening, alogia, avolition)

(Only one symptom is required if delusions are bizarre or hallucinations consist

of a voice keeping up a running commentary on the person's behavior or thoughts,

or two or more voices conversing with each other.)

The occurrence of the delusions or hallucinations must be in the absence of any

serious mood symptoms for at least 2 weeks. The mood disorder, however, must be

present for a significant minority of the time. The symptoms of this disorder

also can not be better explained by the use or abuse of a substance (alcohol,

drugs, medications) or a general medical condition (stroke).

He should be experiencing ongoing symptoms of schitzophrenia for this diagonsis

to be accurate.

Vickie

> > >

> > > Our AS son just turned 7, heading into 2nd grade. This summer has been

somewhat brutal - I think he's overall sick of being home, feeling like he's

being told what to do all the time. If he'd listen the first time around, we

wouldn't have to keep telling him what to do =)

> > >

> > > He shows all the textbook behaviors with respect to countercontrol and

anger management.. ..both are tough for him. He can get upset over relatively

small issues, and has become verbally abusive when he feels angry/upset/

controlled etc....

> > >

> > > Speaking from your experience, will he learn to better manage his emotions

as he gets older?

> > >

> >

> >

> > __._,_..___

> > Messages in this topic (4) Reply (via web post) | Start a new topic

> > Messages

> >

[Guest guest]

hello pam:

i was happy to read that you are seeing some improvement in your daughter's

behavior. you must be pleased. hope it continues to get better and better.

melody

> >

> > Our AS son just turned 7, heading into 2nd grade. This summer has been

somewhat brutal - I think he's overall sick of being home, feeling like he's

being told what to do all the time. If he'd listen the first time around, we

wouldn't have to keep telling him what to do =)

> >

> > He shows all the textbook behaviors with respect to countercontrol and anger

management....both are tough for him. He can get upset over relatively small

issues, and has become verbally abusive when he feels angry/upset/controlled

etc....

> >

> > Speaking from your experience, will he learn to better manage his emotions

as he gets older?

> >

>

[Guest guest]

In general, things should improve over time. But also, try to view the situation from his perspective when deciding why he is having problems. If he's always having to be told what to do, maybe you could write a list of chores for him instead? There is a good book called, "The explosive child" that might provide some help too.

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) Tell me this gets better....

Our AS son just turned 7, heading into 2nd grade. This summer has been somewhat brutal - I think he's overall sick of being home, feeling like he's being told what to do all the time. If he'd listen the first time around, we wouldn't have to keep telling him what to do =)

He shows all the textbook behaviors with respect to countercontrol and anger management....both are tough for him. He can get upset over relatively small issues, and has become verbally abusive when he feels angry/upset/controlled etc....

Speaking from your experience, will he learn to better manage his emotions as he gets older?

[Guest guest]

I would talk. Ask your dd why she feels this new dx is a better fit. Go through the AS criteria and ask why the other is a better fit. She may know things that you haven't seen? Or she may have had a conversation with the doc that you did not hear. Maybe with talking with her, you can better understand the change.

Roxanna

"The only thing necessary for the triumph of evil is for good men to do nothing." E. Burke

( ) Re: Tell me this gets better....

My son was diagnosed at age 3. Age 6/7 was absolutely the worst. That is because he was in a terrible school so it isn't entirely an age thing. "He's a smart boy, he should be able to understand the rules!" Understand, yes, control his impulses, NO WAY.

is 12 now and is much better. He still can't really control a lot of verbal stuff, but he doesn't hit, kick or bite at school now and hardly ever at home. Siblings are a whole different situation. Sometimes my daughter (age 9) LIKES to annoy people. Sometimes she's just in the wrong place at the wrong time when is losing a game. Anyway, mostly he's doing extremely well. I'm seeing him surpass his dad in some social skill areas. I'm seeing him help OTHER kids with AS through social skills. That one really floored me, but I saw him do it with my very own eyes!

Homework is less a struggle now than before.

For younger kids making picture schedules and having a very set

routine can help them. This might work for your child. For picture cards go to do2learn.com and you can subscribe to their make-a-schedule for about $30/year. It is about as good as boardmaker and costs MUCH less. Boardmaker is about $600 in one lump sum. I used make-a-schedule for about 3-4 years. That's $90-100 spread out over time and you can just NOT renew whenever you don't want it any more. There is a book by Batts that you can get at Amazon.com called Road to Independence. It has great suggestions in it. English is not her first language so you might find some odd phrases or incorrect grammar that someone didn't catch, but it's not enough to make it in any way difficult to understand. Just little glitches here and there. She has a teenaged moderately autistic son who is doing extremely well. She started her own school near where I used to live

in TX. Prior to this she worked for our school district and helped us get the right services for my son. She really knows her stuff.

The book is small and not terribly expensive.

Miriam

>

> Our AS son just turned 7, heading into 2nd grade. This summer has been somewhat brutal - I think he's overall sick of being home, feeling like he's being told what to do all the time. If he'd listen the first time around, we wouldn't have to keep telling him what to do =)

>

> He shows all the textbook behaviors with respect to countercontrol and anger management.. ..both are tough for him. He can get upset over relatively small issues, and has become verbally abusive when he feels angry/upset/ controlled

etc....

>

> Speaking from your experience, will he learn to better manage his emotions as he gets older?

>