Re: New with loads of questions!

June 11, 2006

Welcome, . I'm new too (just joined last week).

>

> I am so excited to find an active community to take part in! My

> name is Jester and I have a 6 year old, Noah, who is waiting

> to be dx'd. We've been trying to get a grip on what the source of

> his issues are for almost his whole life. (he started showing

> sensitivities when he was 8 months old)

My son was displaying odd behavior since infancy, too - even earlier.

It was very frustrating and as a new mom, I didn't have any idea what

to do. No one understood - they thought I was over reacting. How

could a baby actually try to hurt someone and get pleasure from it?

" Nah, he doesn't really dislike his daddy, he's just spoiled with his

mommy. " There were soooo many things that Drs should have known were

problems when I mentioned them time & time again, but we had peds who

never took anything seriously (we left after my kids were both really

sick all the time, DD was failure to thrive, and they didn't think we

needed to go to any specialists, who later properly treated both kids

as they realized they had severe health problems).

>

> I won't go into the nitty gritty details, but the psychiatrist we've

> been seeing for 3 years was certain that he did not have any form of

> autism. He treated him for a " non-specified mood disorder " . (which

> I am now convinced is the official term for " I don't know what the

> heck's wrong with you kid! " )

The Psychiatrist we took him to (we were capitated to one place that

the time) spent 10 minutes in a tiny room with no toys, and told me

that my then 3 y/o had the most severe case of ADHD he'd every seen

and we had to put him on meds immediately or we'd all suffer the

long-term consequences. Needless to say, he was full of

you-know-what, but my son does have ADHD symptoms and went on medicine

at age 7. He did NOT need it at age 3, and what he was displaying was

the need for sensory input, attn, and the fact that he was completely

bored since his parents assumed that the Dr would be interacting with

him, not expecting him to sit quietly while we talked.

> Until the last few weeks, Noah was

> taking 2 meds to help alleviate some of his problem behaviors. We

> actually saw a dramatic improvement on the meds & I'm glad we did

> them, but I decided that this summer was a great time to wean him

> off and see what Noah looked like without the meds. I also decided

> that it was time to break it off with this psychiatrist and seek out

> someone who would be a little more proactive in getting to the

> source of the problem behaviors. After reading my first Asperger's

> book, I'm convinced that Noah's picture should be included in the

> DSM manual.

That's what happened here for the most part. I had too much to look

into with other health issues he was experiencing, but when I was up

to date on them, and he was displaying problems that could not be

explained away by ADHD, I remembered the Dev Ped mentioned Autistic

Spectrum several times. She didn't elaborate, so I finally asked for

clarification. I waited a few wks while she was on vacation, and read

up on it. I found out about Asperger's, did investigating, called

people who did other evals, and picked their brains. Everything I did

ruled it in instead of ruling it out. I just got the ASDS (Asperger

Syndrome Diagnostic Scale Summary/Response form) from his Dev Ped, and

there is absolutely no doubt in my mind (or in that of many others at

this point) that it's AS.

> This summer, I'm doing all sorts of alternative therapies. I'm

> normally a mainstream medicine sort of gal, but I've decided that

> it's time to take a risk and see if it works. We're taking Noah to

> the Pfeiffer Clinic in Chicago at the end of the month to see if he

> could benefit from a GF/CF diet and supplementation. I'm also open

> to chelating if his test results indicate that he has high levels of

> heavy metals.

Be very careful with chelation therapy. My father was sucked into

that as a Parkinson's Disease treatment (which is bull....ogna) and it

was not what it was touted to be. I would think it would also be very

traumatic to a 6 y/o, and I don't believe there is any proof that it

works.

> He has started neurofeedback, he's going to be in

> a " social pragmatic language " group at our speech therapy clinic (I

> hope they explain to me what that really means...it sounds

> impressive! LOL), and we're on the list to try him on something

> called " interactive metronome " , also at the speech clinic. If

> anyone has had experience with any of these types of treatments, I'd

> love to hear your thoughts.

I don't have experience, but I would think Neurofeedback could be

helpful, I'm not sure. Someone with experience should be able to

chime in. Social skills training is perfect - you should definitely

pursue that and help from the speech therapist. I'm hoping to get my

8 y/o son into Social Skills classes soon. The school hasn't been

open to doing it in the past, but after e-mailing the Special Ed

director, he's going to make the staff go to a training session over

the summer, and will work on getting them involved with Social Skills

training. :-) I have 2 options here for Social Skills classes, and

both are expensive, so I'm awaiting the official dx (by 7/5) and will

then try to access the DDD's stipend fund to help me pay for that as

well as someone to help make sure he gets all of the supports he needs

next year in his IEP.

We already have had help from a psychologist, and it's been helpful

even though he didn't have AS experience. I'd suggest you look for

one who is very experienced with Asperger's and other PDD's. A

Developmental Pediatrician may be helpful, too - I would assume

there's a children's hospital there in Chicago that would be able to

help you.

> My first (of zillions, I'm sure) questions is about his language.

> He talks A LOT, but doesn't make much sense. A few weeks ago, when

> he would get mad at me, he would start yelling and say " You're a

> hard recipe! " . Yesterday his 3 year old sister (NT with a mean

> streak) said something about a goat and he got mad and said " I'm

> not a goat. See? I have these 2 giant hands? Don't you

> understand? "

LOL. CJ does this sometimes, but we aren't sure if he's serious or

kidding. He's a smart-aleck like his mom (like everyone on my side of

the family), so it's hard to tell sometimes if he's serious or being a

kidder.

> My husband calls him " non-sequitor man " . Everyone who

> knows Noah, calls these statements " Noahisms " . I've been told that

> I should write them down, as it would make a funny book someday.

> They are funny, but when you hear them day after day and don't see

> any progress in his language, it's alarming at the same time. It's

> like his brain can entertain multiple thoughts at the same time and

> then it sends bits and pieces of each of those thoughts into one

> verbalization. Occasionally, he is quite lucid and we can have long

> discussions about planets or whatever he's interested in while we're

> reading. But then when you're least expecting it he'll throw in

> something like " Juipter is a gas giant planet. Does this mean it's

> all my fault? " aaugh! LOL

>

> Ok, this is a longer intro than I had planned!

LOL. You should see my intro! I'm queen of the novelette! LOL. No

one even responded to mine - they probably couldn't get through it. :-)

> I'm just curious if

> anyone else's child has a similar manner of speaking. After asking

> all the specialists who have worked with him, no one can really

> explain why he does this and I've not heard of anyone else that

> speaks like he does. I'm hoping that the neurfeedback and

> interactive metronome will help " rewire " some of those language

> patterns.

>

My son has a rare dysfluency where he repeats...eats...eats the ends

of words...ords...ords. I'd never found anyone else who did that

until I asked here. While I was researching, and found out about

echoalia, I decided to call the speech pathologist that evaluated him

earlier this year, and she told me his dysfluency is " palalalia (or

palalia, I'm not sure which) " , which is frequently seen with

Asperger's. Another thing to rule in AS!

I am assuming that the AS kids have different quirks, including many

different possible speech issues. I think I've seen something like

what you're referring to while I was looking into it, but I can't

remember where. If I think of it or find it, I'll let you know.

> Thanks for already being a wealth of information for me! I sat here

> and read old posts for 2 hours prior to writing this one and I can

> tell that there is much much MUCH knowledge to be gained from this

> group.

>

I'm hoping to tap into their knowledge as well. :-)

Glad to meet another newbie.

Debbie (in NJ)

June 11, 2006

Welcome I have a 3 yr old diagnosed AS daughter. She does have the odd speech

pattern at times of your son.

Just last week she came in the room announcing clapping her

hands.........these are my locators.........was at a lose until I figured she

must of seen the clap on clap off commercial. Her brain processes things

different so her words come out odd at times.

Wecome there are alot more experienced people to help with your questions.

Tammie

Jester <thecharmingrebecca@...> wrote:

I am so excited to find an active community to take part in! My

name is Jester and I have a 6 year old, Noah, who is waiting

to be dx'd. We've been trying to get a grip on what the source of

his issues are for almost his whole life. (he started showing

sensitivities when he was 8 months old)

I won't go into the nitty gritty details, but the psychiatrist we've

been seeing for 3 years was certain that he did not have any form of

autism. He treated him for a " non-specified mood disorder " . (which

I am now convinced is the official term for " I don't know what the

heck's wrong with you kid! " ) Until the last few weeks, Noah was

taking 2 meds to help alleviate some of his problem behaviors. We

actually saw a dramatic improvement on the meds & I'm glad we did

them, but I decided that this summer was a great time to wean him

off and see what Noah looked like without the meds. I also decided

that it was time to break it off with this psychiatrist and seek out

someone who would be a little more proactive in getting to the

source of the problem behaviors. After reading my first Asperger's

book, I'm convinced that Noah's picture should be included in the

DSM manual.

This summer, I'm doing all sorts of alternative therapies. I'm

normally a mainstream medicine sort of gal, but I've decided that

it's time to take a risk and see if it works. We're taking Noah to

the Pfeiffer Clinic in Chicago at the end of the month to see if he

could benefit from a GF/CF diet and supplementation. I'm also open

to chelating if his test results indicate that he has high levels of

heavy metals. He has started neurofeedback, he's going to be in

a " social pragmatic language " group at our speech therapy clinic (I

hope they explain to me what that really means...it sounds

impressive! LOL), and we're on the list to try him on something

called " interactive metronome " , also at the speech clinic. If

anyone has had experience with any of these types of treatments, I'd

love to hear your thoughts.

My first (of zillions, I'm sure) questions is about his language.

He talks A LOT, but doesn't make much sense. A few weeks ago, when

he would get mad at me, he would start yelling and say " You're a

hard recipe! " . Yesterday his 3 year old sister (NT with a mean

streak) said something about a goat and he got mad and said " I'm

not a goat. See? I have these 2 giant hands? Don't you

understand? " My husband calls him " non-sequitor man " . Everyone who

knows Noah, calls these statements " Noahisms " . I've been told that

I should write them down, as it would make a funny book someday.

They are funny, but when you hear them day after day and don't see

any progress in his language, it's alarming at the same time. It's

like his brain can entertain multiple thoughts at the same time and

then it sends bits and pieces of each of those thoughts into one

verbalization. Occasionally, he is quite lucid and we can have long

discussions about planets or whatever he's interested in while we're

reading. But then when you're least expecting it he'll throw in

something like " Juipter is a gas giant planet. Does this mean it's

all my fault? " aaugh! LOL

Ok, this is a longer intro than I had planned! I'm just curious if

anyone else's child has a similar manner of speaking. After asking

all the specialists who have worked with him, no one can really

explain why he does this and I've not heard of anyone else that

speaks like he does. I'm hoping that the neurfeedback and

interactive metronome will help " rewire " some of those language

patterns.

Thanks for already being a wealth of information for me! I sat here

and read old posts for 2 hours prior to writing this one and I can

tell that there is much much MUCH knowledge to be gained from this

group.

Jester

__________________________________________________

June 12, 2006

>I'm also open

> to chelating if his test results indicate that he has high levels

of

> heavy metals.

Hi! This is my first post, though I've been reading the messages

for a few weeks now. At a recent panel, specialists from the Autism

Research Network suggested that chelation had not shown any

stistically signficant impact on autism. After searching the

scientific literature about the issue, my impression is that

chellation has a lot of unknowns and some important risks.

> My first (of zillions, I'm sure) questions is about his language.

> He talks A LOT, but doesn't make much sense. A few weeks ago,

when

> he would get mad at me, he would start yelling and say " You're a

> hard recipe! " . Yesterday his 3 year old sister (NT with a mean

> streak) said something about a goat and he got mad and said " I'm

> not a goat. See? I have these 2 giant hands? Don't you

> understand? "

My 6 1/2 yo son is exactly like that. We actually enjoy it, and find

it refreshing. It has become part of our normal interaction.

However, it is a problem when he communicates with peers or non-

relatives, but he does not seem to care about what others think of

it.

Have a great day. F

June 17, 2006

I don't hold out much hope for the metronome therapy. But the pragmatic

language group is definitely what you want! I have one just like him here

who is 9 yo. He is always talking in echolalic phrases - he always did.

These are memorized phrases that he tries to fit in to suit the situation.

They don't always fit, do they. <g> And yes, people love hearing them

because it is never boring. LOL. My ds learned language in chunks instead

of single words and concepts. Therefore, he has trouble pulling the chunks

apart to make use of them in different ways. He just reuses the chunk. We

have done a ton of things to work on this. Lots of speech therapy to

improve vocabulary and a lot of " answering questions " - the WH's are so hard

for him. So he had a lot of therapy around that. We molded a lot of his

everyday speech - helping him say things more appropriately at home. Like

instead of saying, " Coke, it's the real thing " when he wanted a drink, we

would then direct him by saying, " You want a drink? Reece says, 'I want

some coke, please' " and he started learning. We did a ton of different

things at school as well. For instance, he would always say " hi " to people

the same exact memorized way. So we created a card with a tic/tac/toe grid

on it. In each box, we listed a different way of saying " hi " and he had to

go around and tell people hi, picking a different one from the list and

crossing it off as he went. Lots of this sort of thing has helped. It's a

long process. He still comes up with fun phrases. But it's improved. I

would look into a speech therapist to help out plus the pragmatic group is

probably great as well. Those two things are probably my two picks if you

want my vote. Oh yes, glad you got rid of the previous shrink.

Roxanna

Autism Happens

_____

From:

[mailto: ] On Behalf Of Jester

Sent: Saturday, June 10, 2006 6:02 PM

Subject: ( ) New with loads of questions!