Re: Kim

[Guest guest]

This is true...I forget everyone from different places...Here in AZ 's

services have been awesome..that is one comment her ped made was " if " she

wasn't getting services he would persue a diagnosis and " if " she ever stops

getting services we will look further into a diagnosis.

Kim

[Guest guest]

Kim: Tori's diagnosis has helped her immensely get the services she needs

here in Pa. Her behaviors are so unpredictable, off-the-wall, and interfere

so much with her learning, she receives 25 hours of BHRS services. I have

to say we are very lucky.

Liz-Mom to Tori 5 y.o. DS/PDD-NOS/OCD/NLD

Kim

> << is 15 and doesn't have an " official " diagnosis but after talking

> with her Ped and getting his agreeing opinion I

> feel much better. I know has certain needs, etc that other people

> with

> Downs don't have. It also makes me more understanding when she wants to

> retreat to another room, etc....>>

>

> Hi, Everyone....Kim...one of the benefits to having the 'official' dx. is

> that, depending on the state you live in, you can qualify for wrap around

> services. I just found this out last Fall and I am finally getting help

> for

> Gareth. In Pa., the kids are covered under their Medical Access cards.

> Gareth

> qualifies for 10 hrs/wk....that's 2 hrs. Mon-Fri where someone else is

> there to

> help with behavioral issues, social skills, speech, community outings,

> etc.

> Take care, Everyone.

> Margaret

>

>

>

>

>

[Guest guest]

That's great that you were able to get services for Tori. is 15 and

this wasn't even looked at when she was Tori's age. We had to work through

and learn to deal with 's behaviors etc on our own for many years. I

think it's awesome that the Autism is even looked at now....for alot of 's

life it wasn't, finding this group gave me the information I needed to back up

my suspicions....we HAVE services now, if we didn't of course we would

persue a formal diagnosis... has been through so much in reguards to

surgeries etc I just don't feel she needs to go through the testing etc for a

diagnosis. I am sorry I upset everyone here....I tend to look at things as we

are

dealing with them with a 15 yr old....

Again, I am sorry...

Kim

[Guest guest]

Kim,

There are many parents on this list that raised their kids without a dx of

autism. All I can say is WOW! What a struggle that must have been to not know

and not have any support. I was lucky, and relieved, to get a dx for Seth at

age two. I couldn't even imagine what it would be like if I had not gotten

the dx for Seth. My hat's off to everyone who faced that challenge alone. Not

to mention this group, that I found shortly after his dx. Don't you be sorry.

You are miles ahead of most of us here.

Gail :-)

Gail, Mom to Seth 9-ds/asd/pica

> That's great that you were able to get services for Tori. is 15 and

>

> this wasn't even looked at when she was Tori's age. We had to work through

>

> and learn to deal with 's behaviors etc on our own for many years. I

> think it's awesome that the Autism is even looked at now....for alot of

> 's

> life it wasn't, finding this group gave me the information I needed to back

> up

> my suspicions....we HAVE services now, if we didn't of course we would

> persue a formal diagnosis... has been through so much in reguards to

> surgeries etc I just don't feel she needs to go through the testing etc

> for a

> diagnosis. I am sorry I upset everyone here....I tend to look at things as

> we are

> dealing with them with a 15 yr old....

>

> Again, I am sorry...

> Kim

>

>

[Guest guest]

Kim, what are you apologizing for. I am sorry the older kids were not

fortunate enough to have the services available to them when they were

younger. This world is sooo behind itself, it amazes me at times.

Liz

Re: Kim

> That's great that you were able to get services for Tori. is 15

> and

> this wasn't even looked at when she was Tori's age. We had to work

> through

> and learn to deal with 's behaviors etc on our own for many years.

> I

> think it's awesome that the Autism is even looked at now....for alot of

> 's

> life it wasn't, finding this group gave me the information I needed to

> back up

> my suspicions....we HAVE services now, if we didn't of course we would

> persue a formal diagnosis... has been through so much in reguards to

> surgeries etc I just don't feel she needs to go through the testing etc

> for a

> diagnosis. I am sorry I upset everyone here....I tend to look at things

> as we are

> dealing with them with a 15 yr old....

>

> Again, I am sorry...

> Kim

>

>

>

[Guest guest]

Hi Kim,

Definitely agree what road it is to travel without any support just for

our child alone as a person, as I also had dealt with similar issues.

Definitely agree with the other responses, no apologies as we are here

to support each other and thank you for sharing what you have been

through.

What a Blessing as the channel have changed due to your efforts of not

giving up for . Glad you were able to get the services for

for who she is and that her needs are met with or without another dx.

Its those battles we have to pick and choose.

I'm confident that when one door closes, we're going to open a bigger

and a better door so prayers that continues doing well, thanks to

you being her best advocate.

Irma,16,DS/ASD

[Guest guest]

Thanks everyone,

This is why I love this group. EVERYONE is so supportive. I was having a

bad day and was overly sensitive. was sick with a sinus infection, her

eye was really red, etc....she doesn't tell me at all when she isn't feeling

well so it's like 50 guesses if that makes sense...makes me feel like a

terrible mother when I miss things but it's hard to figure out sometimes.

Ended

up taking her to the Dr. He gave her antibiotics, eye drops and nasal spray.

She suffers a lot from allergies. She is doing much better today, just seems

tired.

Thanks all the support! I really do think it's great when you are able to

get a diagnosis early on....I also think there is a long way to go in

educating the medical and educational professionals on the possibilities of dual

diagnosis.

Take care everyone!

Kim

[Guest guest]

Kim...Welcome to the " Terrible Moms Club " ! We all received official

membership when we had our kids!! Hey, Tori just literally cartwheeled down

14 steps in our hallway...and never said " Ouch! " . I heard a bang then saw

her airborn and I screamed, jumped up and almost had a stroke. She wound up

in a ball at the bottom of the stairs. Thank God she is so limber that she

didn't break anything. But she never complained about any pain anywhere-nor

does she ever.

Liz

Kim

> << was sick with a sinus infection, her

> eye was really red, etc....she doesn't tell me at all when she isn't

> feeling

> well so it's like 50 guesses if that makes sense...makes me feel like a

> terrible mother when I miss things but it's hard to figure out

> sometimes.>>

>

> Hi, Everyone....Kim...if it makes you feel any better about being a

> 'terrible Mom' , let me fill you in on some of the 'things' that I have

> missed with

> Gareth because he wouldn't/couldn't tell me what was wrong. 1) He has

> blown

> out his left ear drum 7 times because I didn't know he had an ear

> infection.

> He would come down all upset about the 'blood.' I would go upstairs to

> his

> room and find his pillow case all pussy and bloody. He never would

> complain

> or pull at his ears. 2) He ends up with terrible strep infections of his

> throat because he doesn't tell me that it hurts. I end up taking him in

> because

> I can 'smell' it on his breath!!! Oh....and he NEVER runs a fever. 3)

> His

> esophagus was raw meat from years of undetected GERD when we found out

> about

> it at the age of 12ish. Fortunately, we had started him on Risperdal and

> he

> was finally able to tell me that his " food tube hurt. " 4) He had an

> appendicitis and I never knew it till I took him to the Dr. because he

> was throwing

> up 'green bile.' I thought he had a touch of a flu bug. The Dr. checked

> him

> out and pressed on his abdomen and commented 'on how warm' the area was.

> He

> said " I THINK he has an appendicitis. " He didn't know for sure because

> Gareth

> didn't 'act' like his abdomen was painful!!! 5) By the time he had hip

> reconstructed surgery (2 yrs ago) he had hardly any hip socket left. He

> now

> has 5 pins holding his hip together. We found out about the hip

> dysplasia

> because the radiologist who did the upper GI for the GERD commented on

> his report

> that Gareth had hip dysplasia. His PC Dr. said " OUCH " when he saw G's

> x-rays!!! Any normal person wouldn't have been walking around like

> that!!! Our

> kids can't/don't comprehend pain and discomfort the way normal people do.

> Years ago (between the ages of 5-10), Gareth insisted on us eating in the

> dark

> at dinner time through the winter months. He could not stand the kitchen

> lights on while eating. I didn't know bright lights 'hurt' autistic

> kids. I

> finally got him a pair of light colored sunglasses for him to wear at

> dinnertime

> so the rest of us could see what we were eating!!! If you are a terrible

> Mom, then that makes me a terrible, terrible, terrible, terrible,

> terrible

> Mom!!! Cheer up....we're here to help. Take care,

> Everyone.

> Margaret

>

>

>

[Guest guest]

That reminds me - Baggs said:

" I came up with this whole idea in a flash one night while lying flat

on my back wondering if I was going to die from what turned out to be

dehydration, when my blood pressure had dropped to somewhere around

80/40 and I couldn't see anything or even sit up. Nobody had noticed

I was dehydrated, least of all me, and I certainly hadn't

communicated anything about it. "

See http://www.autistics.org/library/ambweintraub.html for the full

text. It's mainly about challenging stereotypes that say autistic

people who can type are all high functioning.

> << was sick with a sinus infection, her

> eye was really red, etc....she doesn't tell me at all when she

isn't

> feeling

> well so it's like 50 guesses if that makes sense...makes me feel

like a

> terrible mother when I miss things but it's hard to figure out

sometimes.>>

>

> Hi, Everyone....Kim...if it makes you feel any better about being

a

> 'terrible Mom' , let me fill you in on some of the 'things' that I

have missed with

> Gareth because he wouldn't/couldn't tell me what was wrong. 1) He

has blown

> out his left ear drum 7 times because I didn't know he had an ear

infection.

> He would come down all upset about the 'blood.' I would go

upstairs to his

> room and find his pillow case all pussy and bloody. He never

would complain

> or pull at his ears. 2) He ends up with terrible strep infections

of his

> throat because he doesn't tell me that it hurts. I end up taking

him in because

> I can 'smell' it on his breath!!! Oh....and he NEVER runs a

fever. 3) His

> esophagus was raw meat from years of undetected GERD when we found

out about

> it at the age of 12ish. Fortunately, we had started him on

Risperdal and he

> was finally able to tell me that his " food tube hurt. " 4) He had

an

> appendicitis and I never knew it till I took him to the Dr.

because he was throwing

> up 'green bile.' I thought he had a touch of a flu bug. The Dr.

checked him

> out and pressed on his abdomen and commented 'on how warm' the

area was. He

> said " I THINK he has an appendicitis. " He didn't know for sure

because Gareth

> didn't 'act' like his abdomen was painful!!! 5) By the time he

had hip

> reconstructed surgery (2 yrs ago) he had hardly any hip socket

left. He now

> has 5 pins holding his hip together. We found out about the hip

dysplasia

> because the radiologist who did the upper GI for the GERD commented

on his report

> that Gareth had hip dysplasia. His PC Dr. said " OUCH " when he saw

G's

> x-rays!!! Any normal person wouldn't have been walking around

like that!!! Our

> kids can't/don't comprehend pain and discomfort the way normal

people do.

> Years ago (between the ages of 5-10), Gareth insisted on us eating

in the dark

> at dinner time through the winter months. He could not stand the

kitchen

> lights on while eating. I didn't know bright lights 'hurt'

autistic kids. I

> finally got him a pair of light colored sunglasses for him to wear

at dinnertime

> so the rest of us could see what we were eating!!! If you are a

terrible

> Mom, then that makes me a terrible, terrible, terrible, terrible,

terrible

> Mom!!! Cheer up....we're here to help. Take

care, Everyone.

> Margaret

>

>

>