DIAGNOSIS

[Guest guest]

I had that problem with , on what school to put him in. Before the

diagnosis, he was in a self contained class, 5 kids and 3 adults. He was the

least affected, highest functioning child in the class and I felt they weren't

teaching him appropriately. I pulled him and began homeschooling him. I'm on

my 3rd year of homeschooling, and he's been diagnosed for about a year and a

half.

The biggest thing I can tell you is what I learned when we lived in Missouri,

there is never just one placement option. We had discovered the teacher

singling out for ridicule (self-contained class with 8 kids and 2 adults)

in front of the whole class. He had received an IQ score of 69-70. I called

the state school for severely retarded, and they said they only dealt with IQ's

of 40 or less, but she told me that if the placement he is in is not working,

they HAVE to find an appropriate placement for him. Long story short, they did

in a multi-handicapped class. It was all ages (1st through 6th) and he was

about middle on functioning level. It's a fine line between over-challenged and

under-challenged, though. acts the same if he's over-challenged as he

does when he's bored stiff. I say look for something where he can have 1 to 1

instruction.

Loriann from Hawaii

Wife to Dewight

Mom to , 10 years old, DS-ASD, ADHD, ODD

And , 15 months old

[Guest guest]

In a message dated 9/17/00 5:21:06 PM Eastern Daylight Time,

kayte.brimacombe@... writes:

<< Well, guess I'm on the right list. 's been diagnosed with autism.

Although, we've suspected it for a year now, I was actually really shocked,

I so hoped we were wrong. We were asked 100's of questions and Prof Howlin

observed him for the afternoon. He did his usual stuff, the only time he

took any notice of her was when he picked her fingernails (he couldn't get

to her feet) Anyway, she seemed pretty sure. She recommended an

educational setting which would address the autism primarily - So I guess I

'll start looking around again

I'm wondering what kind of schools your kids are in, are they with

'straight' autistic kids, kids with moderate learning difficulties or are

any in mainstream really included and progressing. The only autistic unit

I've seen was no fun at all, I just couldn't imagine him in it.

Thanks for your support folks, I feel like I'm grieving here

Kayte >>

Kayte,

Gosh, sorry you are feeling a loss. Funny how we all see things so

different. I was so relieved when they said Seth was Autistic. It answered

so many questions. I didn't even take him in for that. He was being

evaluated because of his PICA. Since then, he has done so much better with

all his therapies geared towards the Autism. He is in a wonderful class of 6

Autistic kids with a super teacher and aide. I was relieved to get the

diagnosis. :-)

Gail

[Guest guest]

Kayte,at least you can get the right sort of help now, attends an ESN S

schooland is in a class with alltypes of disability but he is pulled out for

sessions in the " autistic resource room " on a daily basis,the autistic units

around here are mostly more able kids and attached to mainstream

schools,there is a school in Newbury ran on the therapy methods of a Japanese

therapy,Higashi?,I have never looked into it because Wilts is a very mean

county and I think the chance of getting funding is nil Pat

[Guest guest]

Kayte,

I know how hard it is to go to these kind of appointments. I had a really

really bad experience with a developmental pediatrician when Brook was only 1

yr old and I think that is still holding me back from getting him formally

diagnosed. I really don't want to go through something like that again and I

can really feel for you. Try to remember that is still the same

person and see what good can come of the diagnosis.

Marisa

[Guest guest]

hey Kayte, sorry to hear about your sons dx. I know what you mean

about the grieving, my son was just dxed this summer and i know what

you are feeling right now. if you ever want to email me please feel

free to do so, since we are both kinda " newbies " to this. I am

getting to some sort of acceptence stage now i think but i have a lot

of pain about it still and some anger there. my son is 8 almost 9 so

i was in quite a shock and still am some. just wanted to commiserate

and let you know i am willing to talk. please take care.

my son is in a multiply handicapped class in his school which is for

all MH kids. jared has done really well there. we havent yet

discussed the autism the cst meeting is coming soon but his teacher

is skeptical because he does extremely well in school and lets the

autism stuff go at home...his teacher is great but i dont know whats

going to happen with this.

take care ok?:) (hug if ok)

MARIE

> Well, guess I'm on the right list. 's been diagnosed with

autism.

> Although, we've suspected it for a year now, I was actually really

shocked,

> I so hoped we were wrong. We were asked 100's of questions and

Prof Howlin

> observed him for the afternoon. He did his usual stuff, the only

time he

> took any notice of her was when he picked her fingernails (he

couldn't get

> to her feet) Anyway, she seemed pretty sure. She recommended an

> educational setting which would address the autism primarily - So I

guess I

> 'll start looking around again

> I'm wondering what kind of schools your kids are in, are they with

> 'straight' autistic kids, kids with moderate learning difficulties

or are

> any in mainstream really included and progressing. The only

autistic unit

> I've seen was no fun at all, I just couldn't imagine him in it.

> Thanks for your support folks, I feel like I'm grieving here

> Kayte

[Guest guest]

In a message dated 9/17/00 5:21:31 PM Eastern Daylight Time,

kayte.brimacombe@... writes:

<< I'm wondering what kind of schools your kids are in, are they with

'straight' autistic kids, kids with moderate learning difficulties or are

any in mainstream really included and progressing. The only autistic unit

I've seen was no fun at all, I just couldn't imagine him in it. >>

Kayte,

I think you'll find we all run the gamut here on this list. Maddie (soon

to be 7, DS and autism) goes to an approved private school paid for by our

school district. She is one of six kids in the class, and all have one on

one's. Three are autistic (including Maddie) and the other three have

other disabilities. I've checked out the autistic support classrooms, both

in our school district and in the approved private schools, and I didn't like

them either. No one was communicating with each other and no one seemed

happy. I will say however, that I know people who feel their children are

getting a great deal out of them, so you should check everything out

first-hand. Believe me, you'll know when it feels right.

{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}. I remember all too well when Maddie was

dx'd. Of course, I knew she had autism; *I* was the one telling *them* for

so long. However, when she was dx'd, it still felt like being stabbed in the

heart!! It does get better with time.

Donna

[Guest guest]

At 10:46 PM 9/21/00 -0000, you wrote:

You have no idea how nice it has been to be able to go to a group of

people and tell them >what's going on without them just saying " he's a

brat " .

>

>Sincerely~

>

sigh... yes we do have an idea! you've maybe not met my mother-in-law :-)

-- Vicki in MT

[Guest guest]

> Well, we have finally been to the doctor and now have a diagnosis

for

> my son. I was right and the doctor almost immediately diagnosed

him

> with OCD/Anxiety disorder. Today we just went over his

> symptoms/behaviors and talked over some of the possible

treatments.

> For now he thinks that my son is too young for CBT. So we are

going

Congrats on getting a diagnosis! I would have to disagree about your

son being too young for CBT. My daughter is 4 and does tremendously

well with CBT. It has been a life saver... A five year old,

depending on his development otherwise, is probably ready for CBT.

You might want to think about this, because the younger you start the

CBT, the more it can reshape patterns of thinking and behaving before

they get too engrained, and CBT can become a way of life! I even use

it for my anxiety too! This is a great group, you can learn so much

from them about CBT and medicines too! It is such a relief to have

someone be able to tell you what this monster is that has been

affecting your life... even though it's not like you are glad your

kid has OCD, it's a relief to know what it is and what your approach

will be. Take care,

Stephany

[Guest guest]

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

From: " Busch " <stacybusch@...>

> For now he thinks that my son is too young for CBT. So we are going

> to work on both mine and my husbands responses to his behavior.

Hi , congrats (if that's the word) on getting a diagnosis. Now you can

get moving on treatment. Kel is 6 and her doctor also says she's too young

for CBT (still, after a year of spectacular improvement using our home-grown

E & RP program. Her symptoms are lower than at any time since onset, and

she's taking half the Zoloft she was a year ago.)

I wasted a lot of time getting started on E & RP because I felt if I wanted

this doctor--and I did--I had to follow *all* his advice. Later I realized

starting E & RP at home, since I could find no therapist in our area who would

agree to work with Kellen due to her age, was our business and could hurt no

one. I bought the March and Mulle manual and hung on this list's every word

re: E & RP.

Meds were helpful, so was learning a better way of responding to the OCD,

but E & RP has given my daughter the tools to be in control of her OCD.

Nothing else has done so much to pull my daughter out from under the

mudslide of OCD. I very much encourage you to look into it for your son.

There is very little to be lost and potentially a lot to be gained by not

delaying this first-line treatment for OCD.

Kathy R. in Indiana

[Guest guest]

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

From: " Busch " <stacybusch@...>

> For now he thinks that my son is too young for CBT. So we are going

> to work on both mine and my husbands responses to his behavior.

Hi , congrats (if that's the word) on getting a diagnosis. Now you can

get moving on treatment. Kel is 6 and her doctor also says she's too young

for CBT (still, after a year of spectacular improvement using our home-grown

E & RP program. Her symptoms are lower than at any time since onset, and

she's taking half the Zoloft she was a year ago.)

I wasted a lot of time getting started on E & RP because I felt if I wanted

this doctor--and I did--I had to follow *all* his advice. Later I realized

starting E & RP at home, since I could find no therapist in our area who would

agree to work with Kellen due to her age, was our business and could hurt no

one. I bought the March and Mulle manual and hung on this list's every word

re: E & RP.

Meds were helpful, so was learning a better way of responding to the OCD,

but E & RP has given my daughter the tools to be in control of her OCD.

Nothing else has done so much to pull my daughter out from under the

mudslide of OCD. I very much encourage you to look into it for your son.

There is very little to be lost and potentially a lot to be gained by not

delaying this first-line treatment for OCD.

Kathy R. in Indiana

[Guest guest]

Hi Stacey! I know it sounds weird to say I am happy for you but in a sense

thats the truth. I know in my situation with my , I feel I spent a

good 2yrs or so not know ing what to do with this child. Read everything I

could get my hands on and tried every parenting technique known to man and

still everything was haywire. And through it all I was the only one who

really thought there was a problem. My family thought I was just trying to

give her a label, yeah we all want that huh? When the hand washing go to be

100+ times a day and she wouldnt touch anybody or anything and spent 90% of

her day trying to figure out how to avoid germs and sneaking to wash wear

socks on her hands etc. Then my family said well maybe there is something

wrong and I knew what it was then. It was almost a relief because now I had a

path to follow, a rocky path but atleast a path. By prayer, faith

researching, education and support from now part of the family (another part

still thinks Im wrong, and wont except it) we are so much farther along and

happier. I am very happy for you that you now have a path to follow and not

floundering in the middle of the ocean like I was. I wish all of Gods

blessings on you and your family and please update us on how this goes. I

know with us it can change from one day to the next and my biggest problem is

trying to not get so discouraged when we have a bad day as tomm will be

brighter and everytime we have a bad day we usually all learn something from

it and can better handle the bad day next time. Take care. Nikki in O'town

[Guest guest]

Hi Stacey! I know it sounds weird to say I am happy for you but in a sense

thats the truth. I know in my situation with my , I feel I spent a

good 2yrs or so not know ing what to do with this child. Read everything I

could get my hands on and tried every parenting technique known to man and

still everything was haywire. And through it all I was the only one who

really thought there was a problem. My family thought I was just trying to

give her a label, yeah we all want that huh? When the hand washing go to be

100+ times a day and she wouldnt touch anybody or anything and spent 90% of

her day trying to figure out how to avoid germs and sneaking to wash wear

socks on her hands etc. Then my family said well maybe there is something

wrong and I knew what it was then. It was almost a relief because now I had a

path to follow, a rocky path but atleast a path. By prayer, faith

researching, education and support from now part of the family (another part

still thinks Im wrong, and wont except it) we are so much farther along and

happier. I am very happy for you that you now have a path to follow and not

floundering in the middle of the ocean like I was. I wish all of Gods

blessings on you and your family and please update us on how this goes. I

know with us it can change from one day to the next and my biggest problem is

trying to not get so discouraged when we have a bad day as tomm will be

brighter and everytime we have a bad day we usually all learn something from

it and can better handle the bad day next time. Take care. Nikki in O'town

[Guest guest]

Just my $.02 on this topic....

I was also very devastated when I got 's diagnosis. There are no

words to describe how it feels to have a doctor look at you and tell you

that your baby has a very rare, very fatal, and very untreatable

disease. A disease that is progressive, degenerative, and offers

absolutely no mercy to it's sufferers.

BUT....

I was also relieved. I was relieved to know what we were fighting. I was

relieved to know that I didn't somehow cause Matty to be sick. I was

relieved to know that now we could name that disease, we could research

that disease, and we could do our damnedest to fight that disease.

I think that fighting for a diagnosis is a fundamental drive in people,

and I know that I never once even thought about stopping until we had

that diagnosis. Most people, myself included, find it much easier to

face a demon with a name than a demon that has no identity.

Even though it did nothing to change the final outcome,and

eventually did die from his disease, I am so glad that we found out.

and I shared 17 wonderful, beautiful months together. Had

not been diagnosed, his life would have ended at 3, 4 maybe 5

months. We had so much to gain and absolutely nothing to lose by getting

that diagnosis.

Yes, it was a label. Yes, it was painful. Yes, it sucked majorly to have

to hear and accept what that doctor was saying to me. But was the

diagnosis a death sentence?? NO. The disease was Matty's death sentence,

and he had that regardless if he was diagnosed or not.

*hugs*

[Guest guest]

,

I know we correspond off list, but I thought I should remind you that our

symptoms seem to be absolutely the same!! Are we twins?? I have

Fibromyalgia, PCOS, hearing loss, thought to have meneires, but actually

have mondini's, and endometriosis. We are in the same boat!!

Diagnosis

Well, it seems to be coming thick and fast lately.

First I was told that I have Fybromyalgia.

Then I was told that I had severe hypermobility.

First I find out I have polycystic ovaries (yeah I knew this before,

but finally got confirmation)

Then I just found out I have significant hearing loss in one ear,

this coupled with the dizziness is most probably Menieres (have a

appoint in April for the specialist to go through all the test

results as he had to scan to eliminate the possibility of a tumour

etc, if that is clear, he will rule in Menieres, for certain)

On Tuesday I have a sleep study as it is pretty certain that I have

sleep apnea.

I am also flaring up again with my regular symptoms (could be

sjogrens) eyes extrememly dry, I am soo tired, aching etc

Lastly, I read an article on endometriosis, and I am suspicious.

Seems to explain some very longstanding problems in that dept.

Whew, and here I thought that I had one thing, and it would explain

all my symptoms. Seems as though that is not the case.

ANyone here got much experience with polycystic ovaries or Menieres?

bye for now

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[Guest guest]

Do you have one main doc, doing the diagnosing? How much confidence do you have in your docs? It sounds like a good rheumatologist would help????

Lee

rachelvk67@... wrote:

Well, it seems to be coming thick and fast lately.First I was told that I have Fybromyalgia.Then I was told that I had severe hypermobility.First I find out I have polycystic ovaries (yeah I knew this before, but finally got confirmation) Then I just found out I have significant hearing loss in one ear, this coupled with the dizziness is most probably Menieres (have a appoint in April for the specialist to go through all the test results as he had to scan to eliminate the possibility of a tumour etc, if that is clear, he will rule in Menieres, for certain) On Tuesday I have a sleep study as it is pretty certain that I have sleep apnea.I am also flaring up again with my regular symptoms (could be sjogrens) eyes extrememly dry, I am soo tired, aching etcLastly, I read an article on endometriosis, and I am suspicious. Seems to explain some very longstanding problems in that dept. Whew, and here I thought that I had one thing, and it would explain all my symptoms. Seems as though that is not the case.ANyone here got much experience with polycystic ovaries or Menieres?

[Guest guest]

Sara,

Ok, I must have missed some posts regarding this but where is it written that

Psychologists in CA can't make the autism (or dual) dx? I have had

Psychologists who have been skittish about the dx and one who disagreed with

it, but I had no problem introducing it into 's IEP via the Psyche

Report and, although 's dx was initially made by a Neurologist with a

second opinion by another Neurologist, I never introduced the actual medical

documentation into 's school records. They just had my say so on

that. Actually, I believe it was the Administrator at one of his early IEPs

that marked autism on the IEP when I asked him to. I do remember early on

that the administrators were slow to include the autism dx because they said

it would " label " in a more negative way. We got past that! LOL

Terry

[Guest guest]

,

I know that I have heard reports before from parents in Autism groups about

professionals not wanting to make or concur with the diagnosis. I guess we

have been fortunate (so far!) because we have resided in 3 school districts

and two counties in CA and including the " autism " diagnosis in 's IEP

has not been a problem. That's not to say that the appropriate services have

magically appeared or that the staff(s) have been appropriately trained to

work with the myriad of problems associated with the dual dx, but that's

another issue! LOL is 14 and the dual dx has been recorded in his

IEPs since he was about 6, I think.

Terry

[Guest guest]

,

That's interesting. Has it made a difference in the kinds or amounts of

services he can access?

Terry

[Guest guest]

,

That is outstanding! I am so glad for you and for him! We have tried PECS

over the course of several years with with no success. I was

convinced that it had more to do with Staff training in the beginning but it

was the same in the next district/county, so I guess I was wrong. We are

doing SI as well and I have seen progress behaviorally as a result.

Terry

[Guest guest]

Hi Deb,

I know you have probably already posted the info, but could you say again how

old your son is? Sometimes I get behind in the posts and just sort of " fly "

through them....unfortunately I don't retain as much as I used to! LOL

When you say the school is getting ready to cut back on OT/PT, does that mean

you have already had another IEP and addressed their/your concerns or have

they come to this conclusion on their own?

Terry

[Guest guest]

Terry,

School psych's do not have the education or the autority to make any

diagnosis. Where we are they will not even say " perhaps your child has

another dx that will be looked into " The other thing we find is that school

does not want to beleive the dx that an independent psych has done.

Families also have been having problems with the " Autism Team " trying to

take away the dx. The therapys have worked well and the kids are taking

meds. Take the meds away and they have behaviors and autism again. The

Autism Team would not even look at JJ--about 6 months ago he was their star

student for PECS. When did we become part of the team?

And have you noticed how once a dr sticks his dx on your child, then

everyone chimes in " Well we knew that! " It would help so much if they said

something before. Then you could start treatment sooner.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

[Guest guest]

Terry,

JJ was 5 when he was first dx'd. Last year I got them to chcnage is dx from

ds/autism to autism/ds.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: Imaddenmom@...

>

>Subject: Re: Diagnosis

>Date: Mon, Apr 2, 2001, 7:56 AM

>

>,

>I know that I have heard reports before from parents in Autism groups about

>professionals not wanting to make or concur with the diagnosis. I guess we

>have been fortunate (so far!) because we have resided in 3 school districts

>and two counties in CA and including the " autism " diagnosis in 's IEP

>has not been a problem. That's not to say that the appropriate services have

>magically appeared or that the staff(s) have been appropriately trained to

>work with the myriad of problems associated with the dual dx, but that's

>another issue! LOL is 14 and the dual dx has been recorded in his

>IEPs since he was about 6, I think.

>Terry

>

>

>

[Guest guest]

Terry,

Yes very much. He was getting speech 2 days x 15 to 20 min each time a

week. Heck it took 10 minutes to get him in the room. With the dx and

recomendation from the dr. we got speech 5 days for 30 min each time. We

also get Sensory Intergration 1 time a week. And at the SI perons

recommendation he gets SI input each day(mostly swinging).

Now that he is doing PECS they have stopped speech. But we have the

option to revisit speech in the future. Pretty stupid==they worked on m,s,p

for 4 years, never trying any other means of communication. The PECS is now

being done with most of the kids in his class(even Tim). The school never

thought he would get it--he is the star pupil. They did a traiing video on

him last week to demonstrate how PECS is done and the progress that can be

acceaved.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

[Guest guest]

Hi , Terry & everyone,

I posted earlier from NY. We have the doc who won't make the dual

dx. I also wrote about our confusion of SI and autism. I'm

learning. I see you are discussing the two issues. Is there a big

jump from one to the other? Are they common together? We have the

dx of SI from a previous doc. but the school won't acknowledge it.

The school is getting ready to reduce OT & PT because of behav.

problems and lack of progress. But they have not addressed the SI at

all which would help both problems. All they want him to do is sit

there and either cut with a scissor or write with a pencil. We

appreciate any help.

Deb

> ,

> That is outstanding! I am so glad for you and for him! We have

tried PECS

> over the course of several years with with no success. :

( I was

> convinced that it had more to do with Staff training in the

beginning but it

> was the same in the next district/county, so I guess I was wrong.

We are

> doing SI as well and I have seen progress behaviorally as a

result.

> Terry

>

>

>

[Guest guest]

Terry, JJ is 7. It's right in my signature-see below. I can't remember

kids ages or which parents/kids go together either. Old age creaping in.

& Garry, parents of (10 ds), (9 ds), JJ (7

ds/autism/celiac), (6 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: Imaddenmom@...

>

>Subject: Re: Re: Diagnosis

>Date: Mon, Apr 2, 2001, 9:24 AM

>

>Hi Deb,

>I know you have probably already posted the info, but could you say again how

>old your son is? Sometimes I get behind in the posts and just sort of " fly "

>through them....unfortunately I don't retain as much as I used to! LOL

>When you say the school is getting ready to cut back on OT/PT, does that mean

>you have already had another IEP and addressed their/your concerns or have

>they come to this conclusion on their own?

>Terry

>

>

>