Re: Introduction to the group

[Guest guest]

Rosemary, am sure this board will be of great help in providing helpful

suggestions for you to send your sister. You are a wonderful caring sister

and know your sister appreciates you. I have PA , but am very comfortable on

the combination of drugs that I am on. I am on methotrexate 17.5md. on Wed.,

pred 9mg daily and going down, plaquinal, folic acid and I feel fine. Have

been given Celebrex samples, but will try and hold off until going down on

pred. really bothers me. I've come down from 15mg. and will get off I hope.

Your sister needs a lot of support which I have received from this Board. By

the way, you may want to surf " Cancer and Related Illnesses " which is also

great. My husband is in chemo for colon cancer, and tho I am an RN when it

comes so close to home I feel inadequate, That Board is also very

supportive. Had a lovely Mother's day and hope all of you have as well.

Betty in Va.

[Guest guest]

Rosemary,

Hi, I'm Amy. I just wanted to let you know that I only joined this group a

few weeks ago and it has helped me more than I can say. There is great advise

and lots of different treatments out there to consider. People share their

concerns, fears and experiences. It's so nice to share your thoughts and

feelings with someone who can relate. I hope you let your sister know this.

I am currently taking Arava with Methotrexate and Celebrex, etc. It has

taken some time, and though things aren't perfect, I'm feeling a bit better.

They reduced my MTX when I started Arava and I felt terrible for weeks, so I

think the MTX really helps. I think she should give it a try. My doctors

are at Stanford and seem to be on the cutting edge as far as I can tell. At

least they seem to be consistant with others in the group for good treatment

plans. Keep us posted on your sister's condition.

And may I say, what a good sister you are to join this group for her. Bravo!

I'm so happy about your cancer survival too. There is just too much

sickness out there.

Take care.

Amy

[Guest guest]

Dear Rosemary,

You are definitely a courageous survivor and also a very caring sister! I am

so sorry to hear of your sisters predicament.

Glad to hear that the Celebrex is now going to be available for her. Is

Arava available yet there? It is doing wonders for me with less side effects

than the methotrexate. I would caution her to reconsider taking a DMARD such

as methotrexate or any of the other ones there are out there if she is at all

concerned about permanent damage to the joints -- that can be irreversible.

We all suffer side effects, but considering the alternative of permanent

damage many of us choose to take the disease modifying rheumatic agents

anyway!

Please feel free to ask any questions.

[Guest guest]

ralduman <ralduman@...> wrote: Hello,

I have been lurking for a quite a while now, and I would like to

thank you for allowing me to join your creative and enlightened

group. My professional background is in astronautical and mechanical

engineering. I created my first aromatherapy oil blends in

preparation for the birth of my son, using recommendations from

..

Thanks again,

Lina

Hi Lina

....... lovely to see you post....

I can't help but note your career...... my stepfather (now retired and in his

80's .... his company was part of the team that provided the parts for the

Saturn Separation Systems for the Apollo flights..... he is an engineer also....

I love Natural Perfume in all its guises and there is nothing more beautiful

than the true aroma from a plant or flower to assail the psyche...

Janita

Ascent http://www.hayspace.co.uk

Travel log http://www.janitasattars.blogspot.com

Project http://www.flowersofmyddfaiproject.blogspot.com

---------------------------------

What kind of emailer are you? Find out today - get a free analysis of your

email personality. Take the quiz at the Championship.

[Guest guest]

At 08:38 PM 4/5/2007, you wrote:

>Hello,

>

>I have been lurking for a quite a while now, and I would like to

>thank you for allowing me to join your creative and enlightened

>group. My professional background is in astronautical and mechanical

>engineering. I created my first aromatherapy oil blends in

>preparation for the birth of my son, using recommendations from

>the " Healing Home Spa " book by Gennari Cooksley. After 55

>hours of labor and a Caesarean delivery due to fetal distress, these

>blends were a comfort to me. As you probably can guess, I have

>continued blending aromatherapy and natural perfumes. For the past

>three years, I have found this to be a great way to relieve stress.

>

>I am enrolled in Mandy Aftel's Level I Course, which I highly

>recommend. I have also purchased and read 18 of the books

>recommended in the bibliography. I have also perused the archives,

>which are a reflection of the tremendous body of knowledge possessed

>by this group. I will continue to read the posts and the archives

>and contribute when I can.

>

>Thanks again,

>Lina

Hi Lina

Welcome to the group, and have fun perusing the archives and files.

Even my ex-husband's second wife says that the natural perfumes

relieve stress -- she said that when she puts mine on, she just

relaxes. Now *that's* a testimonial, if I could get that out of her, lol.

Anya's Garden of Natural Perfume http://AnyasGarden.com

Artisan Natural Perfumers Guild http://ArtisanNaturalPerfumers.org

Natural Perfumers Community Group

/

Natural Perfumery Blog http://AnyasGarden.Blogspot.com/

[Guest guest]

Hi Joyce, welcome! You're right, LOL, this is a great group and HUGE

support but too bad we all had reason to seek it out!

Your son reminds me some of my son, now 18. His OCD began right

after he started 6th grade. Some of the things he did are same &

similar to your son: " ...trouble going through thresholds, going up

or down the stairs only once,...he jumps all the time...says that his

OCD tells him to do things or bad things will happen. "

had trouble with the bathroom entrance, occasionally another

one; odd how the bathroom one always got him stuck. He sometimes

repeated going down stairs or in the hallway. He would sometimes do

a little jump or skip, think I even saw a twirl once or twice. And

it was always to keep something bad from happening to him. " What "

would happen, no one knew, just a feeling. Plus he said he had to

get a " just right " feeling. So it was the " do or bad thing will

happen " and " just right " combined. He also had a LOT of trouble

sometimes just sitting down, would get up/down....

Are you searching for a therapist yet?

>

> Hello,

> My name is Joyce and this is my first post to the group; a club

that no one really wants to be a member of I suppose! That being

said; thank you for having me.

>

> My 14 year old son has exhibited clear signs of OCD for the last

[Guest guest]

Welcome, Joyce.

So have you thought about seeking treatment, or have you already taken that

step? Glad to have you here, but sorry you have to be here, too.

jonahsfamily@... wrote: Hello,

My name is Joyce and this is my first post to the group; a club that no one

really wants to be a member of I suppose! That being said; thank you for having

me.

My 14 year old son has exhibited clear signs of OCD for the last half year.

The symptoms have become exponentially increased over the last 2 months -

exactly at the time that he started high school. He is really enjoying high

school both academically and socially - both come very easily to him. New

situations however have always triggered a bit of panic.

He has trouble going through thresholds, going up or down the stairs only once,

opening dresser drawers (though not kitchen drawers - I guess food is still a

big motivator!), he jumps all the time, can't rearrange his room or t shirts,

says that his OCD tells him to do things or bad things will happen.

N has always been an enjoyable child to raise, but I am finding this especially

challenging. N's little brother is 7 and is profoundly mentally and physically

disabled. Obviously N did not get the memo about him needing to be the easy

child!

I appreciate the knowledge and support of those of you already in the trenches.

Many thanks,

Joyce in Seattle

---------------------------------

Be a better sports nut! Let your teams follow you with Mobile. Try it now.

[Guest guest]

Welcome, Joyce.

So have you thought about seeking treatment, or have you already taken that

step? Glad to have you here, but sorry you have to be here, too.

jonahsfamily@... wrote: Hello,

My name is Joyce and this is my first post to the group; a club that no one

really wants to be a member of I suppose! That being said; thank you for having

me.

My 14 year old son has exhibited clear signs of OCD for the last half year.

The symptoms have become exponentially increased over the last 2 months -

exactly at the time that he started high school. He is really enjoying high

school both academically and socially - both come very easily to him. New

situations however have always triggered a bit of panic.

He has trouble going through thresholds, going up or down the stairs only once,

opening dresser drawers (though not kitchen drawers - I guess food is still a

big motivator!), he jumps all the time, can't rearrange his room or t shirts,

says that his OCD tells him to do things or bad things will happen.

N has always been an enjoyable child to raise, but I am finding this especially

challenging. N's little brother is 7 and is profoundly mentally and physically

disabled. Obviously N did not get the memo about him needing to be the easy

child!

I appreciate the knowledge and support of those of you already in the trenches.

Many thanks,

Joyce in Seattle

---------------------------------

Be a better sports nut! Let your teams follow you with Mobile. Try it now.

[Guest guest]

Hi

Yes, it sounds like N and are of the same variety. What is your son's

current status.

N has a bathroom thing too; we have many bathrooms in our house but N will only

use 1 - naturally that happens to be the master bathroom! I have absolutely no

privacy. He also will not sleep alone; either his cat needs to be in his bed or

he just sleeps with his younger brother (apparently he thinks that a small

feline or a 7 year old disabled kid can somehow protect him). His preference

would be to sleep on the couch in my room if I let him.

N has just started therapy. I had a very hard time finding a therapist that

would see him. He had 2 sessions and now the therapist wants him to come twice

a week. I am keeping up my hopes that we will see some positive results.

Joyce in Seattle

-------------- Original message ----------------------

From: " " <@...>

> Hi Joyce, welcome! You're right, LOL, this is a great group and HUGE

> support but too bad we all had reason to seek it out!

>

> Your son reminds me some of my son, now 18. His OCD began right

> after he started 6th grade. Some of the things he did are same &

> similar to your son: " ...trouble going through thresholds, going up

> or down the stairs only once,...he jumps all the time...says that his

> OCD tells him to do things or bad things will happen. "

>

> had trouble with the bathroom entrance, occasionally another

> one; odd how the bathroom one always got him stuck. He sometimes

> repeated going down stairs or in the hallway. He would sometimes do

> a little jump or skip, think I even saw a twirl once or twice. And

> it was always to keep something bad from happening to him. " What "

> would happen, no one knew, just a feeling. Plus he said he had to

> get a " just right " feeling. So it was the " do or bad thing will

> happen " and " just right " combined. He also had a LOT of trouble

> sometimes just sitting down, would get up/down....

>

> Are you searching for a therapist yet?

>

>

>

>

>

>

> >

> > Hello,

> > My name is Joyce and this is my first post to the group; a club

> that no one really wants to be a member of I suppose! That being

> said; thank you for having me.

> >

> > My 14 year old son has exhibited clear signs of OCD for the last

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be accessed at:

> / .

> Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ),

Tamar

> Chansky, Ph.D.( http://www.worrywisekids.org ), Dan Geller, M.D.

> (http://massgeneral.org/pediatricpsych/staff/geller.html ),Aureen Pinto

Wagner,

> Ph.D., ( http://www.lighthouse-press.com ). Our list moderators are

> Birkhan, Castle, Joye, Kathy Mac, Gail Pesses, and Kathy

> . Subscription issues or suggestions may be addressed to Louis

> Harkins, list owner, at louisharkins@... , louisharkins@... ,

> louisharkins@... .

>

>

>

[Guest guest]

Hi

Yes, it sounds like N and are of the same variety. What is your son's

current status.

N has a bathroom thing too; we have many bathrooms in our house but N will only

use 1 - naturally that happens to be the master bathroom! I have absolutely no

privacy. He also will not sleep alone; either his cat needs to be in his bed or

he just sleeps with his younger brother (apparently he thinks that a small

feline or a 7 year old disabled kid can somehow protect him). His preference

would be to sleep on the couch in my room if I let him.

N has just started therapy. I had a very hard time finding a therapist that

would see him. He had 2 sessions and now the therapist wants him to come twice

a week. I am keeping up my hopes that we will see some positive results.

Joyce in Seattle

-------------- Original message ----------------------

From: " " <@...>

> Hi Joyce, welcome! You're right, LOL, this is a great group and HUGE

> support but too bad we all had reason to seek it out!

>

> Your son reminds me some of my son, now 18. His OCD began right

> after he started 6th grade. Some of the things he did are same &

> similar to your son: " ...trouble going through thresholds, going up

> or down the stairs only once,...he jumps all the time...says that his

> OCD tells him to do things or bad things will happen. "

>

> had trouble with the bathroom entrance, occasionally another

> one; odd how the bathroom one always got him stuck. He sometimes

> repeated going down stairs or in the hallway. He would sometimes do

> a little jump or skip, think I even saw a twirl once or twice. And

> it was always to keep something bad from happening to him. " What "

> would happen, no one knew, just a feeling. Plus he said he had to

> get a " just right " feeling. So it was the " do or bad thing will

> happen " and " just right " combined. He also had a LOT of trouble

> sometimes just sitting down, would get up/down....

>

> Are you searching for a therapist yet?

>

>

>

>

>

>

> >

> > Hello,

> > My name is Joyce and this is my first post to the group; a club

> that no one really wants to be a member of I suppose! That being

> said; thank you for having me.

> >

> > My 14 year old son has exhibited clear signs of OCD for the last

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be accessed at:

> / .

> Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ),

Tamar

> Chansky, Ph.D.( http://www.worrywisekids.org ), Dan Geller, M.D.

> (http://massgeneral.org/pediatricpsych/staff/geller.html ),Aureen Pinto

Wagner,

> Ph.D., ( http://www.lighthouse-press.com ). Our list moderators are

> Birkhan, Castle, Joye, Kathy Mac, Gail Pesses, and Kathy

> . Subscription issues or suggestions may be addressed to Louis

> Harkins, list owner, at louisharkins@... , louisharkins@... ,

> louisharkins@... .

>

>

>

[Guest guest]

Can we all meet for kawfee? We could sit and tell stories and see the

humor in the situation. And give hugs.

J also had/has trouble with doorways " in-out, in-out 2-2-4-4, 2-2-4-4,

2-2-4-4 " he would repeat over and over as he touched his toes to the

threshold going back and forth through the door.

The day we admitted him to the hosp he stood in the pathway near our

house for 2.5 hours doing his step routine, 10 steps starting with the

right foot 10 times-or something. Way too complicated for me.

Anytime we took a walk he walked at least twice what we did because he

had to go back and forth, back and forth.

Anyway, thanks to all for being here even tho we'd much rather be

someplace else.: )

Jdy

> > >

> > > Hello,

> > > My name is Joyce and this is my first post to the group; a club

> > that no one really wants to be a member of I suppose! That being

> > said; thank you for having me.

> > >

> > > My 14 year old son has exhibited clear signs of OCD for the last

> >

> >

> >

> >

> > Our list archives, bookmarks, files, and chat feature may be

accessed at:

> > / .

> > Our list advisors are Gail B. ,

Ed.D.(http://www.ocdawareness.com ), Tamar

> > Chansky, Ph.D.( http://www.worrywisekids.org ), Dan Geller, M.D.

> > (http://massgeneral.org/pediatricpsych/staff/geller.html ),Aureen

Pinto Wagner,

> > Ph.D., ( http://www.lighthouse-press.com ). Our list moderators

are

> > Birkhan, Castle, Joye, Kathy Mac, Gail Pesses,

and Kathy

> > . Subscription issues or suggestions may be addressed to

Louis

> > Harkins, list owner, at louisharkins@... , louisharkins@... ,

> > louisharkins@... .

> >

> >

> >

[Guest guest]

Welcome, Joyce.

We have a 15 year old son with OCD. We also live in Washington and

see a great psychologist in Seattle, weekly. We live a ways from

there and are on the road 5-6 hours every week when Josh has his

appointment, but it's worth the drive, because we have seen progress

for the first time ever, with therapy.

Glad you found us. There is great support and information in this group.

BJ

>

> Hello,

> My name is Joyce and this is my first post to the group; a club that

no one really wants to be a member of I suppose! That being said;

thank you for having me.

>

> My 14 year old son has exhibited clear signs of OCD for the last

half year. The symptoms have become exponentially increased over the

last 2 months - exactly at the time that he started high school. He

is really enjoying high school both academically and socially - both

come very easily to him. New situations however have always triggered

a bit of panic.

>

> He has trouble going through thresholds, going up or down the stairs

only once, opening dresser drawers (though not kitchen drawers - I

guess food is still a big motivator!), he jumps all the time, can't

rearrange his room or t shirts, says that his OCD tells him to do

things or bad things will happen.

>

> N has always been an enjoyable child to raise, but I am finding this

especially challenging. N's little brother is 7 and is profoundly

mentally and physically disabled. Obviously N did not get the memo

about him needing to be the easy child!

>

> I appreciate the knowledge and support of those of you already in

the trenches.

>

> Many thanks,

> Joyce in Seattle

>

[Guest guest]

Welcome new member. I haven't been a member too long but find it a

great comfort to be in touch with others in pain from back and neck

problems. I get strength from reading how others cope. I don't have

anyone in my life that has severe problems so this goup is a great

comfort.

>

> Hi all you back and neck pain sufferers,

>

> I am so pleased that I found this group. As soon as I did I

> immediatly signed up. I have been reading the post and I have to

tell

> you all they have been very imforative

>

> Ten years ago I suffered my first bout of siactica. It was the

summer

> of the OJ Simpson trial. The doctor said to stay in bed so I did

the

> entire summer. I took pain medication, a Dose pack which is

steroids

> and flexril. By the end of summer I was finally able to get up and

> walk around with out any pain and my right hip shifted back into

> place. After that I had several other bouts with it.

>

> Well 2yrs ago while working I had ask another employeed to help me

> pull a patient up in the bed. I'm a Registered Nurse. When we

started

> to pull her up the other employee did not even begin to pull and

OMG

> did I feel it in my back. The next night I was having pain in both

> arms like hot burning bands were placed around them and secured

very

> tightly. I had tingling and numbness in my thorasic area and deep

> shooting pains in both legs.

>

> I ended up going to the ER who sent me to a neurologist. I wasn't

> pleased with the neurologist so i went to an orthopedic surgeon

where

> I found out via an MRI that i had 6 blown disc. He didn't reccomend

> surgery at this time because he said with the type of injuries i

have

> I would benefit from new technology coming out. So they are

treating

> me through physical therapy and pain management.

>

> I work 48 hours a week, take care of my home and do pretty much

what

> I want to do. I have pain 24/7, I wake up every day in very bad

pain

> and have to literally using mind control force myself to get up and

> do the things I need to do that day.

>

> I could ramble on but for now I am going to close this out. I hope

I

> have shared enough about my back pain so people understand me. Like

I

> said previously, I have really been enjoying the posting on here

and

> have learned a few things.

>

> Thank you all for allowing me to be here

>

[Guest guest]

Hi Mark,

Welcome to the group, it's been a life line for me as there is so much knowledge here and understanding. Hope you find it helpful too. Feel free to ask any questions...

Estelle

From: Mark Lutz <marklutz32210@...>Subject: ( ) Introduction to the group Date: Monday, 23 February, 2009, 3:44 AM

Hello, My name is Mark and my wife is Joanne, and our daughter is Miki, who recently was evaluated in the daycare as having the symptoms of either Aspergers or High Functioning Autism. This has suddenly immersed my wife and I in a sea of more questions than answers and reading the writings of the 'professionals' seems to make it worse, so I thought, better to listen and learn from parents, who are able to observe their children better than anyone else. I'd liked to think I'm neither accepting or rejecting, but only want the best for my child. Thanks Mark

[Guest guest]

Mark, with a diagnosis, you can finally breathe a sigh of relief, you are home! It will take about 3 weeks for the shock to pass, and after that you will learn to love.

[Guest guest]

Welcome! Join in or just listen...this is a great group of people. And remember ...Autism and Asperger's are on a spectrum....so your child may not fit in all the same categories. Like my son...he wants friends, has some friends, lost some friends and is quite social compared to others with AS. But he has the Social Skills deficiency big time.

Happy Learning.

Janice Rushen

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

From: Mark Lutz <marklutz32210@...>Subject: ( ) Introduction to the group Date: Sunday, February 22, 2009, 10:44 PM

Hello, My name is Mark and my wife is Joanne, and our daughter is Miki, who recently was evaluated in the daycare as having the symptoms of either Aspergers or High Functioning Autism. This has suddenly immersed my wife and I in a sea of more questions than answers and reading the writings of the 'professionals' seems to make it worse, so I thought, better to listen and learn from parents, who are able to observe their children better than anyone else. I'd liked to think I'm neither accepting or rejecting, but only want the best for my child. Thanks Mark

[Guest guest]

Hi Mark and Joanne! My son with HFA/AS is now age 20. I think it

can sometimes get confusing when reading some information, as traits

vary with kids, some traits/criteria may affect a child strongly in

one area or they may be more " mild " than in another with HFA/AS,

etc.

How old is Miki?

Are you yet having any " aha! " moments from reading, where you realize

why she's done certain things or responded certain ways, etc.?

>

> Hello,

>

> My name is Mark and my wife is Joanne, and our daughter is Miki,

who recently was evaluated in the daycare as having the symptoms of

either Aspergers or High Functioning Autism.  This has suddenly

immersed my wife and I in a sea of more questions than answers and

reading the writings of the 'professionals' seems to make it worse,

so I thought, better to listen and learn from parents, who are able

to observe their children better than anyone else. 

[Guest guest]

Miki is 28 months and an only child. Her mother works in child care and had Miki in her class up until recently. At around 18 months, one of the staff suggested that Miki was delayed in her language. But when we compare her to other children, she didn't seem unusual. About a month ago is when the 'specialist' met with us to say that our daughter failed a couple of areas that makes her probable for HFA/AS. I have been studying furiously since that time and making very careful observations with our daughter NOT because I am trying to prove or disprove, but I think you would agree, the issue is to make sure you are dealing with the 'correct' condition. What I am having trouble with is that at 28 months I don't think things are as clear as they would be

later, but now they say we have to do intervention. The specialist seems to think that there's little doubt and suggest she be tested but I've read that many doctor's like to wait until after three or even five. It is confusing. Are there some very specific traits that would clearly determine HFA/AS?

Mark

From: <@...> Sent: Tuesday, February 24, 2009 9:20:21 AMSubject: ( ) Re: Introduction to the group

Hi Mark and Joanne! My son with HFA/AS is now age 20. I think it can sometimes get confusing when reading some information, as traits vary with kids, some traits/criteria may affect a child strongly in one area or they may be more "mild" than in another with HFA/AS, etc. How old is Miki? Are you yet having any "aha!" moments from reading, where you realize why she's done certain things or responded certain ways, etc.? >> Hello, > > My name is Mark and my wife is Joanne, and our daughter is Miki, who recently was evaluated in the daycare as having the symptoms of either Aspergers or High Functioning Autism. This has suddenly

immersed my wife and I in a sea of more questions than answers and reading the writings of the 'professionals' seems to make it worse, so I thought, better to listen and learn from parents, who are able to observe their children better than anyone else.

[Guest guest]

Hi

Mark,

I wrote a summary of our journey for

someone else a while ago and have copied and pasted some of it here.  

Looking back at Beth it was quite apparent

that “something” was not “normal” and, without any

knowledge of what we were dealing with at the time,

incredibly difficult to deal with.  At

the weaning stage ie 6 months onwards she would only eat from a red/yellow

stripy spoon as that was what I used at home – she would also only eat if

the food arrived in the feeder’s left hand as I am left handed.  By “would only” I mean she would

shut her lips and cry if it was different. 

I also only realised there was a “right” and “wrong”

way around our local park when I decided one sunny day to push her buggy the

opposite way to my normal habit – the absolute fit of tears and

frustration was not worth talking about. 

This is all pre-words!!!!!!!  Her

world was rigid even then – if I did something one way once it had to be

done that same way ever after, written in stone.  It was driving me nuts and I couldn’t

understand what was going on or talk to anyone about it as all they saw was a

bright little girl.

I had misgivings that Beth was “on

the scale” when she was about 18 months old and around the same time met a

boy of about 8 with AS.  He made a big

impression on me and I could never tell you why at the time.  He had the high pitched monotone voice that

cuts through your brain and this was the biggest thing that hit me at the time with

Beth.  She had a complicated history as a

baby that left me with Post Traumatic Stress Disorder and I spent a long time trying

to figure out if what I heard in Beth was “the AS voice” or simply

my inability to cope with a crying child after all our family drama.

At the time I

mentioned it to my m-i-l who works with kids with special needs in school.  She laughed me to scorn and simply said she

was “our Beth”.  But our Beth

was already doing unusually intelligent things for her age like sorting and

sequencing.  I read loads of stuff on AS

and filed it away – relieved that m-i-l was so sure.  At 3 I dug out the AS stuff again –

“our Beth” was now successfully navigating stairs etc so no one was

watching *how* she achieved these tasks. 

She did single foot/double feet up the stairs as an 18 month toddler

would.  She showed no signs of body

awareness with nappies etc. I finally mentioned my fears to my closest friend

and we decided to regress her with baby toys –

she had major touch issues we identified among other things.  A few months later she appeared to have

filled in many of the gaps of babyhood and life moved on – another sigh

of relief on the AS front.

At 4 ½ I decided

we were potty training regardless and after a battle things finally began to

click.  By this time she

was having meltdowns and I was struggling to cope.  At 5 our family world collapsed with

financial issues meaning we had to move to Wales leaving our old life/world behind – and we had a nightmare

with Beth.  She missed everything

including her bedroom carpet – literally. 

My friend, knowing how I struggled to cope (we lived with them for 6

months just before we moved to Wales so she knew Beth very well) happened on an

email about Dyspraxia and many things clicked about Beth.  I went through her wardrobe ditching anything

scratchy, itchy, sore etc etc etc and we began to get somewhere with our

distraught child.  I also began to figure

out I too have Dyspraxia and a load of things going back to my own childhood

clicked into place.  Life moved on again

– but then I began to see the things that weren’t Dyspraxia and

were still something else.

I hope some of this helps…

Best wishes, a

-----Original

Message-----

From:

[mailto: ] On Behalf Of Mark Lutz

Sent: 24

February 2009

07:47

To:

Subject: Re: ( )

Re: Introduction to the group

Miki is 28 months and an

only child. Her mother works in child care and had Miki in her class up

until recently. At around 18 months, one of the staff suggested that Miki

was delayed in her language. But when we compare her to other children,

she didn't seem unusual. About a month ago is when the 'specialist' met

with us to say that our daughter failed a couple of areas that makes her

probable for HFA/AS. I have been studying furiously since that time and

making very careful observations with our daughter NOT because I am trying to

prove or disprove, but I think you would agree, the issue is to make sure you

are dealing with the 'correct' condition. What I am having trouble with

is that at 28 months I don't think things are as clear as they would be later,

but now they say we have to do intervention. The specialist seems to

think that there's little doubt and suggest she be tested but I've read that

many doctor's like to wait until after three or even five. It is

confusing. Are there some very specific traits that would clearly determine

HFA/AS?

Mark

From:

<hotmail>

Sent: Tuesday, February 24, 2009 9:20:21 AM

Subject: ( ) Re:

Introduction to the group

Hi Mark and Joanne! My son with HFA/AS is now age 20. I think it

can sometimes get confusing when reading some information, as traits

vary with kids, some traits/criteria may affect a child strongly in

one area or they may be more " mild " than in another with HFA/AS,

etc.

How old is Miki?

Are you yet having any " aha! " moments from reading, where you realize

why she's done certain things or responded certain ways, etc.?

>

> Hello,

>

> My name is Mark and my wife is Joanne, and our daughter is Miki,

who recently was evaluated in the daycare as having the symptoms of

either Aspergers or High Functioning Autism. This has suddenly

immersed my wife and I in a sea of more questions than answers and

reading the writings of the 'professionals' seems to make it worse,

so I thought, better to listen and learn from parents, who are able

to observe their children better than anyone else.

No virus found in this outgoing message.

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[Guest guest]

Hi Mark,

From everything I have heard it is widely accepted that early

intervention is very important. While I know that it is scary

especially when you don't have any older children to compare to (my

AS son is my first born and we did not recognize any symptoms until

he started school now that we have more kids we can think back and

recognize some things that he did even at 2 or 3 that were atypical).

Does your state have a birth to 3 program? In Wisconsin all children

can be evaluated through the county health departments and if they

qualify as delayed they are treated for free, often in the home.

This covers things like speach delays and autism.

If your insurance covers it you can also check with the nearest

childrens hospital. They usually have some sort of child

developement department that can test children for delays.

Hope this helps. I know that it can be scary. We have all been

there. Anyway, there is no harm done by checking things out and a

whole lot to be gained if it turns out that she does have some sort

of delay. Good luck.

Vickie

> >

> > Hello,

> >

> > My name is Mark and my wife is Joanne, and our daughter is Miki,

> who recently was evaluated in the daycare as having the symptoms of

> either Aspergers or High Functioning Autism.  This has suddenly

> immersed my wife and I in a sea of more questions than answers and

> reading the writings of the 'professionals' seems to make it worse,

> so I thought, better to listen and learn from parents, who are able

> to observe their children better than anyone else. 

>

[Guest guest]

Mark and Joanne,

I have a 6 yr old ds with aspergers/adhd. His younger brother is now 3yrs and 9 months and he has been in therapy with early intervention since just after his 2nd birthday. Initally the team thought and we did too that he was somewhere on the autistic spectrum like his brother. We still dont have a diagnosis for him but at least autsim/ aspergers/hfa has now been ruled out. He has language delay and has quite sever sensory issues, he also has some sterotypical mannerisms accociated with autism like hannd flapping, toe walking and finger twisting as well as echolic speech. Since he has been in early intervention for the last year and a bit he has come on so much in that time. The team put a programme in place for home and playschool for us to follow. We also did floortime therapy with him which brought him on alot and he as had 2 blocks of occupational therapy. As i said he still does not have a diagnosis but the team are cretain he

has a specific language impairment, it's like a language disorder. This can mimic autism they say thats why they wanted to watch him for that whole time to be 100% sure it wasn't autism. Just wanted to let you know I know how u guys are feeling right now. What they told us was if he gets all the help and intervention now then by the time he starts school he won't need all that support. hope this helps a bit.

Estelle

From: Vickie Boehnlein <baneline1@...>Subject: ( ) Re: Introduction to the group Date: Tuesday, 24 February, 2009, 3:01 PM

Hi Mark,From everything I have heard it is widely accepted that early intervention is very important. While I know that it is scary especially when you don't have any older children to compare to (my AS son is my first born and we did not recognize any symptoms until he started school now that we have more kids we can think back and recognize some things that he did even at 2 or 3 that were atypical).Does your state have a birth to 3 program? In Wisconsin all children can be evaluated through the county health departments and if they qualify as delayed they are treated for free, often in the home. This covers things like speach delays and autism.If your insurance covers it you can also check with the nearest childrens hospital. They usually have some sort of child developement department that can test children for delays. Hope this helps. I know that it can be scary. We have all

been there. Anyway, there is no harm done by checking things out and a whole lot to be gained if it turns out that she does have some sort of delay. Good luck.Vickie> >> > Hello, > > > > My name is Mark and my wife is Joanne, and our daughter is Miki, > who recently was evaluated in the daycare as having the symptoms of > either Aspergers or High Functioning

Autism. This has suddenly > immersed my wife and I in a sea of more questions than answers and > reading the writings of the 'professionals' seems to make it worse, > so I thought, better to listen and learn from parents, who are able > to observe their children better than anyone else. >

[Guest guest]

I don't know the answer to thiat question...each child is so different...most HFA/AS have trouble with social skills, friends, foods they eat, sensitivity to lights,clothing...some become obsessive with certain subjects...some are a little OCD...

I think at 28 months it might be hard to tell...but I don't see any harm in testing her. This way she can get as much help as possible at an early age. Man, I wish I had know this...I found out in 3rd grade my son was ADHD and then in 6th grade it was changed to PDD Nos and finally AS.

Good luck

Jan

Janice Rushen

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

From: Mark Lutz <marklutz32210@...>Subject: Re: ( ) Re: Introduction to the group Date: Tuesday, February 24, 2009, 2:46 AM

Miki is 28 months and an only child. Her mother works in child care and had Miki in her class up until recently. At around 18 months, one of the staff suggested that Miki was delayed in her language. But when we compare her to other children, she didn't seem unusual. About a month ago is when the 'specialist' met with us to say that our daughter failed a couple of areas that makes her probable for HFA/AS. I have been studying furiously since that time and making very careful observations with our daughter NOT because I am trying to prove or disprove, but I think you would agree, the issue is to make sure you are dealing with the 'correct' condition. What I am having trouble with is that at 28 months I don't think things are as clear as they would be later, but now they say we have to do intervention. The specialist seems to think that there's little doubt and suggest she be tested but I've read that many

doctor's like to wait until after three or even five. It is confusing. Are there some very specific traits that would clearly determine HFA/AS?

Mark

From: <@ hotmail.com> Sent: Tuesday, February 24, 2009 9:20:21 AMSubject: ( ) Re: Introduction to the group

Hi Mark and Joanne! My son with HFA/AS is now age 20. I think it can sometimes get confusing when reading some information, as traits vary with kids, some traits/criteria may affect a child strongly in one area or they may be more "mild" than in another with HFA/AS, etc. How old is Miki? Are you yet having any "aha!" moments from reading, where you realize why she's done certain things or responded certain ways, etc.? >> Hello, > > My name is Mark and my wife is Joanne, and our daughter is Miki, who recently was evaluated in the daycare as having the symptoms of either Aspergers or High Functioning Autism. This has suddenly immersed my wife and I in a sea of more questions

than answers and reading the writings of the 'professionals' seems to make it worse, so I thought, better to listen and learn from parents, who are able to observe their children better than anyone else.

[Guest guest]

>

> The specialist seems to think that there's little doubt and suggest

she be tested but I've read that many doctor's like to wait until after

> three or even five.� It is confusing. Are there some very specific

traits that would clearly determine HFA/AS?

Mark, I think the early intervention can't hurt and may help a lot.

My son was not dx'd until he was 12 (he's 14 now), and I hate thinking

about how much early intervention might have helped him.

Some things my aspie did or didn't do at your daughter's age that were

atypical.

- Had a much smaller vocabulary and talked much less than normal. We

didn't worry about it because his receptive language was excellent and

we had no problems communicating with him. Didn't " babble " much as a

baby.

- Reacted to social interactions reasonably appropriately, but rarely

initiated them.

- Never pointed at things to " show " us.

- Had a hard time " labeling " things. Referred to my husband and

myself both as " mommy daddy " and called both his twin brother and

himself " ga-ga " .

- Had poor emotional control and appeared " stubborn " .

- Didn't adapt to new situations very well. Enough so that we didn't

visit people or go places as much as we would have. Beyond what is

typical for a 2yo. I gave up on going to church. He would cry and

cry and the nursery people would come get me, and in the sanctuary, he

would spend the whole time trying to get away from me and bolt to the

door. I never heard a word of the sermon and it was pointless. When

we did go somewhere, it had to be carefully planned to avoid meltdowns

(bring plenty of drinks and snacks and time the car ride with naptime,

etc.). This included everyday things like shopping. Again, beyond

typical 2yo. I didn't even think about daycare or preschool until he

was 4--luckily my husband could be home during the day.

- Saying he was a picky eater is a gross understatement. He was way

beyond being a picky eater. He had a handful of things that he would eat.

- Didn't read our emotions unless they were extreme. He couldn't tell

when we were angry until we got to the point where we " lost it " . It

was hard to get him to " follow the flow " . I used to have to give him

a sharp spank on the bottom just to get him to pay attention to me and

switch gears rather than as punishment.

- Hated swinging very high; it scared him to death. It also took him

much longer than typical to start climbing playground equipment.

I could go on all day, but I think you get the idea. Feel free to ask

if you have something specific you are wondering about. I've had to

think back on all this stuff since I'm in the middle of 2 separate

detailed autism evals for both school and privately. They suggested I

look back at our baby pictures to help remember, and they were right;

that worked like a charm.

Ruth

[Guest guest]

Hello Ruth,

I want to thank you for what I think has been the most helpful and

usable information with regards to my daughter. This is what I have

been looking for, not explaining anything away but what I should

actually be looking for. Really appreciate that.

Mark thoughful and help advice

>

> But you have to make sure you don't confuse high intellect with

> communication skills. My son is also very bright. But saying the

> alphabet, counting, and naming animals is not the same as

> communicating feelings and intentions. These last two are what

> autistic kids have problems with. Part of the reason why we didn't

> worry about my son was because he was very bright and doing lots of

> good things intellectually that other kids his age couldn't even

begin

> to do. We didn't think about the significance of all the things he

> COULDN'T do that other kids his age were doing.

>

> I think she is improving because she is getting early intervention

> from you as parents, so she's already getting benefits. But be

aware

> that because you and she are " fixing " some things doesn't mean she

> isn't autistic anymore. Her neurological differences will show up

in

> other ways.

>

> For example, when my son did start talking, he started talking all

at

> once. He actually quickly advanced to where he was AHEAD of kids

his

> age. He still didn't talk a lot, but when he did he had a very

large

> vocabulary and used the words correctly. And another thing to

> consider--autistic kids can be introverted and extroverted just like

> anyone else. The extroverted ones talk a lot, but you'll see the

> typical autistic communication problems, e.g., not " reading " people

> correctly and therefore responding kind of " off " . It may be hard to

> talk to them about emotions or intentions.

>

>

> What to look for is if she is showing you things purely to share in

an

> emotional sense, like " hey, isn't this neat " and being able to share

> in that connection. Showing you something because she wants

something

> is not the same thing. And she may well. My son has always shared

> things with us, although he often doesn't think to share things with

> us that most kids would I think, like dramatic things that happen at

> school. I think this is partly because he misses the dramatic vibes

> since his interpretation of body language is so weak, etc.

>

> > > See, I would be careful to make sure this is not just

intellectual

> differences. She may be tending to play on her own because she is

at

> a different place intellectually than all the other tots. This was

> another thing we ran into, that is, our kids were playing with toys

> and doing activities " older " than the toys and activities typical

for

> their age and didn't have a lot in common with many of the kids. I

> had to choose our early schools carefully.

>

> >

> I think it is hard to tell from what you have said. Perhaps you

might

> want to make sure the people doing the evaluations are autism

> specialists, e.g., make sure the people telling you they are so sure

> she is autistic actually have the training to make that call. We

have

> always had our own evaluations done alongside the school's, although

> it depends on what your school is like and how much you trust their

> evaluations.

>

> I can't imagine what early intervention could hurt as long as they

> don't ignore her intellectual needs, as she is obviously very

bright.

> Unfortunately, if she is HFA or Asperger, yes, the differences do

> usually get more troublesome as they get older and the demands

placed

> on them get more complex. However, early intervention for HFA/AS

is a

> new thing, too new for people to really know the effect. Every year

> they dx kids younger and younger, and I really think the early

> intervention will make a difference. Especially since by definition

> kids who are HFA/AS have intellectual strengths to draw on to help

> them learn strategies. I would have loved to have known what was

> going on with my son at your daughter's age, so I would say " go

with it " .

>

> Ruth

>

[Guest guest]

>

> Hello Ruth,

>

> I want to thank you for what I think has been the most helpful and

> usable information with regards to my daughter. This is what I have

> been looking for, not explaining anything away but what I should

> actually be looking for. Really appreciate that.

You're welcome! --Ruth