Our Update

August 2, 2002

Well, as I've said before, I've always suspected had

Aspergers Syndrome (AS) or some related autistic range " disorder " as

he had some of the characteristics.

So yesterday I took him to TEACCH, a center that diagnoses autism and

related communication disorders. They talked to me (or rather

listened to me) for an hour, had come in a couple times for a

question or two. And they agreed they think he is somewhere in the

autistic range. Now I have to fill out LOTS of sheets, mail them in

and they'll set up an appt to spend a full day with him; but then,

the appt times are now on a 6-month waiting list!

I felt relief somewhat, SAD somewhat (even though I suspected it,

funny how it feels to have it confirmed!). The good news is that

they will go ahead and help me with the SCHOOL SYSTEM!!!! I think

they might even attend a meeting with me if I was to have a school

meeting about him. They ARE going to go ahead and write the school

with recommendations.

So, good news and sad news! But at least we can now address

from " 's perspective " instead of, I guess, a " typical "

perspective.

One thing she said was that I now need to stop looking at 's

OCD as separate from his autism, that they are now " combined " ; so I

don't look at it as dealing with just his OCD and then dealing with

his AS (or high-functioning autism or whatever diagnosis he

eventually ends up with) - I need to look at them more as " one. "

Gotta go, more later!

August 2, 2002

I was going to write you a reply regarding 's

appointment, but then read 's reply, and she said it so well

that I'll just say ditto and good luck to you and .

School starts here on Wednesday for my daughter , and it's time

for me to take a deep breath, and prepare to do battle... again.

:-( Hoping for the best, regarding teachers...

Marlys in SC

to

> Chris:

>

> I'm glad your appointment went well, and I can totally relate to the

feelings of SAD, RELIEVED, DISAPPOINTED, CONFUSED, all coming at the

same time. Let us know how things progress and what changes you are

having to make as a result of the new diagnosis when you do get one.

Certainly, having some help on your side for the upcoming school year

has to be a relief.

August 2, 2002

Dear

If it looks like OCD, walks like OCD, smells like OCD...it probably

is.

The movie before bed problem is something that Annie would do.

Anything we do that is new or different, or bending the rules a little can

instantly become an obsession. Case in point : we bought her a treat from the

pharmacy after her therapy appointments at first because it was so horrible

for her to go to - but then we have spent the next TWO YEARS arguing about

why we don't do that anymore. If we let her stay up late to watch a movie, we

have to be prepared for the huge argument the next night. If we have dessert

twice in a week, it becomes a huge obsession (all candy and sweet things are

an issue for her - she used to hoard candy). We have become fairly good at

saying " no, this is turning into an OCD thing, and we're going to nip it in

the bud. " She, of course, gets angry and argues that it IS NOT AN OCD

THING!!!!!! but generally recognizes secretly that it is, and usually gives

up reasonably quickly.

I applaud you for marching ahead and working on a better diagnosis

for . I hope it helps get him the treatment and especially the school

situation he needs!!

in Nevada

August 2, 2002

Thanks and Marlys!

What surprises me is that usually I'm one to " dwell " on things, think

about them constantly (hmmm...obsessed?) Like when the school

situation came up. Thought about it everyday. And I expected myself

to sorta think again and again about the meeting at TEACCH; but it's

like once it was over, I talked briefly with about it,

thought about it a little but I'm not " dwelling " on it. I'm just

gonna fill out all the papers, send them in, wait and see what

happens with the school (since TEACCH is sending a letter to them)

and see what happens.

Something else new - at the beginning of the summer the kids of

course stay up later watching TV or movies. Well, and

got in the habit of watching a movie at bedtime. Now CANNOT

go to sleep without watching a movie. And, of course, he and

can't agree on what to watch a lot of times. The other night when

that happened, I watched get SOOOO stressed/anxious as he

couldn't get to sleep, or rather go to bed. I told ,

considering I had to get up for work, to let watch ANYTHING

he wanted as I needed my sleep. Of course, that " order " didn't work

either. But in talking to about going to bed withOUT

watching TV/movie, he said he " can't. " And he seemed so stressed. I

was wondering if this might be an OCD thing??

> > Chris:

> >

> > I'm glad your appointment went well, and I can totally relate to

the

> feelings of SAD, RELIEVED, DISAPPOINTED, CONFUSED, all coming at

the

> same time. Let us know how things progress and what changes you

are

> having to make as a result of the new diagnosis when you do get

one.

> Certainly, having some help on your side for the upcoming school

year

> has to be a relief.

September 6, 2002

Hi ! I'm knocking on wood too, frantically, as our year is

still going great and it'll be a month on the 8th. And on 's

midterm grade sheets, he's making A/B's, which is also good as I have

NOT checked any of his homework. I did pull a few sheets out of his

backpack to look at his writing, it's improved too. BUT I CAN see

that at times it looks " neater " and then other times more like last

year, less legible.

IS showing more of " something. " I think I'm seeing a little

more of OCD (touching, hesitating, certain " looks " /expressions) but

then what with what I call his " Aspergerish " traits, I think I see a

little increase in that too. AND he's getting to that " teenage "

point and is getting " mouthy " to me. And has NEVER been

that, stubborn YES but mouthy NO.

I haven't talked to any of his teachers yet this year. And I still

haven't called the school about my request to test for

learning disabilities (the math thing and some other stuff) as since

he's doing well grade-wise I'm afraid they will argue the point and

I'm just not up to it these days.

What kind of tics does Annie have? It seems I've read of using CBT

regarding tics also, somewhere when I was reading up on stuff.

> Hi all,

> I've been REALLY afraid to post anything about our school

year

> because I just know it'll jinx it - but here goes... We have now

finished two

> weeks of school, and so far, Annie is loving it and doing really

well. Wow.

> She has an amazing teacher who had a child last year with OCD, ADD

and TS so

> she wasn't at all flipped out when I told her our whole saga. I

think, just

> maybe, that over the summer we have finally found a med combo that

works! The

> only negative thing is that her tics are getting worse and more are

> appearing. So we'll have to figure out whether to attempt to do

something

> about that soon.

> So to everyone out there - have faith! We have been

struggling for

> two years to find a combination of meds that helps both her OCD and

her ADD,

> and just when I was about to give up, we got something that works!

(Celexa,

> Concerta and Risperdal)

> Best wishes to all,

> , who is now knocking madly on wood

>

September 6, 2002

Wonderful news about Annie's start to the school year! Having a teacher

who " gets it " (vs just reading the IEP or listening to Mom try to convey how OCD

and etc. can interfere with school) is gold :-)

Kel's had the easiest start to the school year ever since OCD, very little anx.

and no upswing in Os and Cs that I can see. No " toxic perfectionism " that leads

to dramatic meltdowns over the first less-than-an-A+ paper that means the year

is " ruined. " The only thing is...the clothing and sensory problems are suddenly

back as of last weekend, after being completely gone for well over a year and a

half. I can never figure if this particular symptom is anxiety-related--if so

why start up abruptly 2 weeks into the new school year?--or something else going

on in her brain. The other things I've always sort of linked this to,

handwriting, tics and general fidgetiness, are fine so far. But even with this

annoyance, this school year has begun with very little interference from OCD and

I'm so happy for her.

Anyway, I second the positive message in your post, there is hope and our kids

do improve! The start of the school year is a good time to notice improvements

over last year's start, and the year before that. I at least tend to more

notice the day-to-day problems rather than slow-but-steady improvement, but

school starting up again gives me the opportunity to notice how far my daughter

has come since last year.

Kathy R. in Indiana

----- Original Message -----

From: xslav@...

I've been REALLY afraid to post anything about our school year

because I just know it'll jinx it - but here goes... We have now finished two

weeks of school, and so far, Annie is loving it and doing really well. Wow.

She has an amazing teacher who had a child last year with OCD, ADD and TS so

she wasn't at all flipped out when I told her our whole saga. I think, just

maybe, that over the summer we have finally found a med combo that works! The

only negative thing is that her tics are getting worse and more are

appearing. So we'll have to figure out whether to attempt to do something

about that soon.

So to everyone out there - have faith! We have been struggling for

two years to find a combination of meds that helps both her OCD and her ADD,

and just when I was about to give up, we got something that works! (Celexa,

Concerta and Risperdal)

Best wishes to all,

, who is now knocking madly on wood

September 6, 2002

This is great news, . Luke is also having a good year. He has a very

compassionate teacher (unlike last year..ugh). She was born with cerebral palsy

and walks with a significant limp. She is very young and has no children, but

so far I'm finding that she has a good grasp on being patient with Luke, but not

allowing him to cross boundaries.

Having an educator this year that I feel is on the " team " in helping Luke will

be such a change from last year. His second grade teacher told me once he was

acting like a hypochondriac. This was toward the end of the year when I had

just about had enough of her intolerance and attitude. I was so close to saying

" you are acting like an inconsiderate -----! " But I didn't. It turns out that

she was very instrumental in getting this year's particular teacher for Luke. I

made a point to stop in and see her to let her know how much I appreciated her

assistance with this regard. She seemed happy to see me and I was happy to see

her after the summer break. I think most of our pleasure though was based on

the fact that Luke is not in her class this year!

I hope Annie's tics improve soon. I know these have been increasing for a

while. Luke is complaining about not being able to pay attention very well at

school. I hesitate to make any med changes this early in the school year, but

I'm sure keeping a close eye on how he is doing academically. There is no doubt

in my mind that he has ADD issues and as you know has been diagnosed with such.

But, symptoms of these crazy conditions overlap and present themselves like each

other so much it is hard to know if his inattention at this point is an ADD

issue, or an " obsessing on something issue " . Fortunately, he is really good

about articulating his concerns. We're still looking for a therapist and I'll

be anxious when we have this objective opinion to consult with occasionally.

Mine and Luke's best to you and Annie, and to all.

Warmly,

in Missouri (Luke's mom)

Re: our update

Hi all,