New Person with Questions! Help!

November 13, 2009

Hi There... I am totally new to the group and totally new to the possibility of

AS. My son started kindergarten 2 months ago and I had my first parent teacher

conference last night. He has been doing very well - he is very bright and the

work is pretty easy for him and he enjoys it. He also behaves well in class and

has always been a good kid. But of course, we've always known he is a little

eccentric - he is very creative and very focused. So I was quite surprised last

night when his teacher told me she was seeing some things that concerned her.

She said he doesn't make eye contact when he talks to her, at least not most of

the time, which we have also noticed at home, but never really thought about.

She said he also speaks in whispers often and she has to ask him to speak

louder. She feels he takes longer to answer questions verbally or express his

thoughts in words. I do see him often taking a long time to get ideas out at

home, but then he is usually going on, and on, and on about the latest video

game he is playing on his Nintendo DS. He tends to be very focused in on

relatively narrow interests, like for a week or two he will play a particular

video gaem and he will draw characters from it frequantly and talk at length to

you about it if you will listen for that long! She said he has trouble making

connections with the other kids at recess, which we had noticed as he complained

once or twice a week that his friends won't play with him at recess. he clearly

enjoys the structured classroom time VERY much, but seems lost at recess with

little structure and trouble playing with the other kids, as he really isn't

very interested in anything they are doing. His teacher said he gets frustrated

easily playing with other kids when he does play with them, because they don't

play the way he wants - but he isn't bossy or selfish or mean. He is really

well behaved overall, but just tends to retreat and play by himself as soon as

he faces any conflict during play with another kid. His teacher suggested we

have him worked up with a doctor, a psychologist I am assuming? Is that what we

should have him see? I guess I am asking if all these traits sound like AS to

you all? I have to admit, after doing some reading, there are a lot of smaller

traits, like him being very turned off by certain normal smells, having

aversions to loud noises, retreating to his room when we have other families

with kids over to visit, he to-walked until age 4 or 5, but I had thought that

was just habitual... Oh, he also was describing to us why he didn't want to

play tag with the other kids, and he said he got confused about who he was

supposed to be chasing - he said all their faces looked the same - so that has

made me wonder if he has facial processing issues. He walked very early at 9

months and developed speech in a pretty normal timeline - except he would be

fairly quiet around other people, then when he would talk, he would use big

words that you may not expect from a 2 year old... like using teranasaurus rex

instead of just saying dinosaur... I am so close to the situation, I think

there are so many things I see every day and I just think... yeah, that's

. He just seems so 'normal' to me, yet with each passing hour I seem to

come up with another thing that makes me wonder, now that the teacher has

suggested this. I do trust the teacher and think she wouldn't bring this up if

she wasn't truly concerned. For me, perhaps I have created a whole new set of

things that are 'normal' for , because he is by nature unusual. But he is

able to pretend to be a cat, he sings, he can actually be quite gregarious in

groups of kids, although I admit it always rings a little off to me when he is

like that, almost like he's trying to entertain them on purpose? If anyone has

any thoughts on how I should proceed, thoughts on whether this sounds like it

could very well be AS, or is there anything esle you have ever heard of that

would sound like what we are seeing? I would really appreciate any responses

and thought. Also, any experiences of you all as parents wrapping your minds

around AS when you were first told. Last night I was fine, this morning I was

crying... Just all over the place... Thank you so much for any info or

encuragement or advice you can provide... (-:

>

> From: Betsy <bwintermantel@...>

> Subject: ( ) Looking for some insight....

>

> Date: Wednesday, November 11, 2009, 7:53 PM

>

> Â

>

> Hello All, I am new to the group and not really sure if I belong here, but

hope some of you can read my story and offer some insight.

>

> So, I am the mom of a very spirited 14 month old little girl. She is highly

intense, tightly wound, and extremely demanding... and yes, even more so than a

typical 14 month old. She seems to be extremely smart for her age and blows me

away with some of the things she does. Despite all of her challenges, she can be

very delightful and such a joy to be around. She has reached all of her

milestones (sitting, crawling, walking) early. Sat at about 4 months, crawled at

6.5 mo and walked at 9 months.

> It seems as if her bad days are REALLY BAD. She can throw tantrums like I have

never seen and I am quiet surprised that she hasn't hurt herself yet. She throws

her body around, while kicking and screaming. She will bite and pinch out of

anger. Though, she usually does this to me and only once with my husband (her

father). These behaviors started at around 9 months of age.

> She was a late babbler, still doesn't say MaMa, but does say Papa (this is

what she will call her Daddy). She clearly understands who Mama is when asked

where I am as she will turn and look at me or point. She has some speech delays,

but her ST has chalked it up to dyspraxia. She does say about 8 words. She is

orally defensive. She has yet to start eating solids. She will put food in her

mouth, but spits it out, put it back in, and repeats this over and over. She

doesn't swallow the food. She will, however, from time to time eat 8-10 bites of

something. This seldom happens. She does seem to have some oral sensory related

issues. She will not put any type of pureed food in her mouth. She tests all

food with her hands before she will even place it in her mouth. Basically, she

still loves off of formula. It doesn't matter how much we limit her intake, she

is content to starve if the only other option is to eat food. We have seen a

Peadi GI who has ruled out

> any medical conditions. She does go to an OT, but we haven't made any

progress.

> I have also noticed that she doesn't always respond to her name. This seems to

happen when she is very engaged in playing, or some other type of activity. She

does know her name and usually does respond to it. It is only on occasion that

she doesn't.

> So, basically I am writing to this group to see if any of you have any insight

on our story. Do these sound like typical early symptoms of Asperger's? I know

it is almost impossible to get a diagnosis at her age, but I am also sure that

most of you noticed that there was something different much earlier than when

your children were actually diagnosed. I shared these stories with a family

member who teaches special needs children and she was the first to mention AS. I

have wondered myself in the past, but never verbalized any concerns to anyone.

> Can you all offer any insight?

>

> Thanks,

>

> Betsy

>

November 15, 2009

Welcome to the group. I understand how a suggestion of AS from a professional can shake you up, but be glad that you have observant and informed ppl working with your son who are astute and can guide you. I WISH my ds had been dx at 5, because he displayed all the same characteristics your son has, but no dx was made until he was 15 due to his intelligence, success in academics and his calm temperament. His behavior changed dramatically when he was 12 and he was dx with ODD, which masked the AS symptoms. His dx has come so late that many, many mistakes have been made.

For the dx, try to find someone in your area who has extensive experience with dxing AS. You may have to travel a distance to get to that professional, but the testing and evaluations are extensive and you don't want you or your ds to have to repeat them several times.

Once you have the Clinical dx, your next step is to initiate an IEP for your ds at his school, if the school hasn't already done so. All school districts are different, some rely heavily on the MH dx, others insist on doing they're own assessments. Typically the school will do a behavioral analysis assessment ~where they follow ds throughout the day and document triggers, behavior, interactions, attention span, etc. and various other tests as well as having you fill out questionnaires regarding history of behaviors at home. They should also get the school Psychologist involved, so they can also make recommendations to his IEP. Nobody know your son like you do, so you can closely track any progress. When you notice something isn't working, you can have his IEP tweaked.

Also, you could contact the Mental Health department in your County, and have a Case worker assigned so you can access MH services. Those actions should get the ball rolling. I dont know what state you live in, but I would suggest you google Autism Spectrum Support for your state. www.pacer.org has a wealth of information, and may be able to direct you as well. GOOD LUCK !!

From: have_faith_2008 <have_faith_2008@...>Subject: ( ) New Person with Questions! Help! Date: Friday, November 13, 2009, 6:55 PM

Hi There... I am totally new to the group and totally new to the possibility of AS. My son started kindergarten 2 months ago and I had my first parent teacher conference last night. He has been doing very well - he is very bright and the work is pretty easy for him and he enjoys it. He also behaves well in class and has always been a good kid. But of course, we've always known he is a little eccentric - he is very creative and very focused. So I was quite surprised last night when his teacher told me she was seeing some things that concerned her. She said he doesn't make eye contact when he talks to her, at least not most of List owner: -owner

November 15, 2009

I agree. you are very lucky someone has brought this to your attention so you can learn as much as you want and prepare him for his future. my husband was NEVER diagnosed. He has aspergers for sure and my duaghter has autism. His mother is the one person who can never be told. She would think it means something is wrong. It is so silly because everyone knows he is socially nervous and doesn't make good eye contact. he has trouble making and keeping friends. he can only talk about thiings he likes. When others share stories about thier likes he is very uncomfortable and trying to interupt with his own stories. He constantly compares our life to tv shows. many mnay other things. He is the sole money making in my family though. I stay at home. he is an electrical engineer and makes

enough money to pay the bills. I pray that my daughter someday will recover from autism and have the asperger label instead because I know so much about it now. I see aspgers as very do-able. My husband and I have been together for 6 years and I am a very good body language reader so I try to teach him what he is doing and what typical people naturally do. He is just wired differently than most people but nothing is wrong or damaged just different.

From: have_faith_2008 <have_faith_2008>Subject: ( ) New Person with Questions! Help! Date: Friday, November 13, 2009, 6:55 PM

Hi There... I am totally new to the group and totally new to the possibility of AS. My son started kindergarten 2 months ago and I had my first parent teacher conference last night. He has been doing very well - he is very bright and the work is pretty easy for him and he enjoys it. He also behaves well in class and has always been a good kid. But of course, we've always known he is a little eccentric - he is very creative and very focused. So I was quite surprised last night when his teacher told me she was seeing some things that concerned her. She said he doesn't make eye contact when he talks to her, at least not most of List owner: - owner@group s.com

November 15, 2009

What you describes sounds so much like my son. B was diagnosed this year, after

me struggling for 3 years to find someone who would listen to my concerns. B is

very bright, picks up on things very easily (academic I mean). Very creative,

and hyper-focuses on his interests. B is opposite w/ his speaking, practically

yells everything- very loud. But he is sensitive to smells, lights, fabrics-

not as bad as some, but enough to notice. He also toe walked and flapped until

the past few months. He will be 7 in a couple of months, and we still deal with

a lot at home. His k-4 teacher had to put up w/ a lot of " strange " behavior, to

the point that they asked us to take him out of the school. At that point, we

still didn't have a diagnosis, just a difficult kid! He did fine in the next

placement, and we decided it was sensory overload for him in the first

classroom. Current School doesn't seem to get it. Pediatrician didn't get it.

It took finding a child psychiatrist that had dealt w/ Asperger's to see it, and

she saw it immediately. <b> The trick is to find someone who can diagnose that

has actually worked with Autism spectrum kids. <b> Doesn't really matter-

psychiatrist/nuerophychologist/nuerologist/pediatrician. If they haven't dealt

with it, they won't be able to put all the pieces together to see the whole

picture.

Once someone knows what to look for, the pieces of the puzzle all fit, and you

can see the whole picture. At first we thought B was just a fussy eater, when

at 10 months, he wouldn't eat baby food anymore. NOTHING from a spoon from me.

He wouldn't sleep-it would take us hours to get him asleep, even as an infant.

The precocious language at 3 years old. The put and take game over and over and

over for an hour at a time, at 2 years old. (pieces in once container, dump

out, start over), the LOUD voice, the echocolia (repeating lines from movies or

books), the ADHD diagnosed at age 4, teaching himself to write, then read...over

and over, hearing from friends and relatives " he is so smart " , but in the next

breath " you need to discipline him, you let him get away with too much " .

Tantrums, meltdowns over the type shirt he has to wear, or the fact that I put a

new food on his plate, or that I called him to dinner before he finished what he

was working on-insisting he come NOW, not when he finished 10 minutes

later.(first time obedience is so hard w/ him!) We have learned to cope w/ all

of these things. Funny, since he is on Ritalin for the " adhd " (really for the

hyperness of Aspergers), the school sees a pleasant child, very bright, reading

above grade level by 2 years, making straight A's. So he doesn't need any help

in their eyes. But yet, off medication he still does all of this Asperger

stuff.

Hang in there. With proper support, it does get better, and somewhat easier.

You learn tricks to deal with things. You learn to choose your battles! You

learn to accentuate the positive, and ignore/downplay the negative. (He can

read just about anything I put in front of him, and I rarely have to spend any

time on studying for spelling tests, and we just mostly try to ignore the little

" obsessions " he gets hooked on (like this weekend its making zerbert/rasberry

noises with his mouth-driving us crazy, but I know he doesn't even really

realize he is doing it).

The meltdowns totally set me on edge, but I have learned to give him warnings of

when an activity is about to change (ex: I know you are typing your dinosaur

names, but we are going to eat dinner in a couple of minutes, so find a stopping

point.) That simple act of me preparing him saves both of us tremendous grief.

We take a moment to warn him that a change is coming, saving him the tantrum

because we are dragging him away from a preferred activity. I have also learned

that if we will give him a few minutes after he gets home every day to engage in

a preferred activity before asking him to do something else, he is in a MUCH

better mood for the rest of the evening. His way to decompress from his day, I

guess.

Sorry this has been so long, just remember all to well being where you are,

wishing someone had told me it how it was all fitting together and would all

work out. Enjoy your bright, intelligent, inquisitive child!

>

> Hi There... I am totally new to the group and totally new to the possibility

of AS. My son started kindergarten 2 months ago and I had my first parent

teacher conference last night. He has been doing very well - he is very bright

and the work is pretty easy for him and he enjoys it. He also behaves well in

class and has always been a good kid. But of course, we've always known he is a

little eccentric - he is very creative and very focused. So I was quite

surprised last night when his teacher told me she was seeing some things that

concerned her. She said he doesn't make eye contact when he talks to her, at

least not most of the time, which we have also noticed at home, but never really

thought about. She said he also speaks in whispers often and she has to ask him

to speak louder. She feels he takes longer to answer questions verbally or

express his thoughts in words. I do see him often taking a long time to get

ideas out at home, but then he is usually going on, and on, and on about the

latest video game he is playing on his Nintendo DS. He tends to be very focused

in on relatively narrow interests, like for a week or two he will play a

particular video gaem and he will draw characters from it frequantly and talk at

length to you about it if you will listen for that long! She said he has

trouble making connections with the other kids at recess, which we had noticed

as he complained once or twice a week that his friends won't play with him at

recess. he clearly enjoys the structured classroom time VERY much, but seems

lost at recess with little structure and trouble playing with the other kids, as

he really isn't very interested in anything they are doing. His teacher said he

gets frustrated easily playing with other kids when he does play with them,

because they don't play the way he wants - but he isn't bossy or selfish or

mean. He is really well behaved overall, but just tends to retreat and play by

himself as soon as he faces any conflict during play with another kid. His

teacher suggested we have him worked up with a doctor, a psychologist I am

assuming? Is that what we should have him see? I guess I am asking if all

these traits sound like AS to you all? I have to admit, after doing some

reading, there are a lot of smaller traits, like him being very turned off by

certain normal smells, having aversions to loud noises, retreating to his room

when we have other families with kids over to visit, he to-walked until age 4 or

5, but I had thought that was just habitual... Oh, he also was describing to us

why he didn't want to play tag with the other kids, and he said he got confused

about who he was supposed to be chasing - he said all their faces looked the

same - so that has made me wonder if he has facial processing issues. He walked

very early at 9 months and developed speech in a pretty normal timeline - except

he would be fairly quiet around other people, then when he would talk, he would

use big words that you may not expect from a 2 year old... like using

teranasaurus rex instead of just saying dinosaur... I am so close to the

situation, I think there are so many things I see every day and I just think...

yeah, that's . He just seems so 'normal' to me, yet with each passing hour

I seem to come up with another thing that makes me wonder, now that the teacher

has suggested this. I do trust the teacher and think she wouldn't bring this up

if she wasn't truly concerned. For me, perhaps I have created a whole new set

of things that are 'normal' for , because he is by nature unusual. But he

is able to pretend to be a cat, he sings, he can actually be quite gregarious in