Re: Hi. Need Advice, please

July 16, 2002

Nicki-

My name is Dayna and I have Micah who is 10. I too am new to this site. It

took us a very long time to get the dual dx, even though Micah is not verbal.

He too loved to dangle socks, would do it for hours. You bring up enough

similarities that you should really keep pushing for answeres, no matter what

they are. Our dr. was reluctant to diagnose with autism because Micah is

very social. The dual dx complicates the " standard " or " common "

characteristics. If there is a dual dx, it is helpful to have documented so

that your child can get the appropriate services. The people on this site

seem to have a lot of information and are a huge resource. The potty

training thing was very hard for us also, Micah was 6 before he was trained,

but it did come! Good luck and hang in there.

Dayna (Micah 10 , siblings- a (7), Madison (2) and Logan (1))

July 16, 2002

Hi Nicki, and welcome.

We spent years trying to get Ian's autism diagnosed because he was so

verbal. One expert told us early in our time seeing her that he was

definitely not autistic, but after seeing him for 2 months, she apologized

and said yes, he was. It's just that she'd been working with

uncommunicative children. Ian meets eye contact, he initiates

conversations, he tells stories, he asks questions. His autism doesn't lie

in communication, but in other things. If you feel that has

autistic tendencies, trust yourself. Work with her as if you've heard the

diagnosis. Eventually someone will see it too. It took us 5 years to go

from getting a pat-pat-pat on the hysterical mother's hand to a diagnosis.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

July 16, 2002

In a message dated 7/16/02 9:33:55 AM Pacific Daylight Time,

eleanor7694@... writes:

<< Hi Everyone, my name is Nicki, mom to Eleanor.

just turned 8 yrs old. >>

Hi Nicki, and welcome. I have not been through the potty training stage yet,

so I hope you can work this out so you can help me when we get to that point!

LOL Glad you found the list.

Gail :-)

Gail-Mom to Seth 6 ds/asd/pica, jo 9 the gymnast, 11 the pianist,

25 beautiful but a pain, Jen 26 the wallet breaker, Grandma to Errick 6

ALL boy and wife to , my hero.

July 16, 2002

Hi Nicki and WELCOME.

My name is Pam and I am mom to Hannah (DS) and (DSand ASD). They are

identical twins and the love of my life. They just turned 7.It took me a while

to get the DX of Autism for . She is some what verbal. She still isn't

potty trained and is jsut now starting to show any interest or understanding of

the matter. She puts her hands in her poop and doesn't understand she shouldn't

do that. Her sister is day time potty trained.

I noticed a big difference in the two of them and that is how I knew had

autistic traits. I probably wouldn't have noticed if it wasn't for that.

I don't know what to tell you about the holding the pee thing. Have you gotten a

second or third opinion? I would definitely take to a specialist.

Have you taken her to a child pshycologist to get the dx for autism? That is

what I had to do. The peds. would tell me she had more of the Downs in her than

Hannah but I knew better. So I took her to a child develpment center. It was

obvious to them.

Good Luck!!!!! Welcome again!! You will fall in love with everyone here!

eleanor7694 <eleanor7694@...> wrote: Hi Everyone, my name is Nicki, mom

to Eleanor.

just turned 8 yrs old. She has DS. is and always has been

quite verbal but I've often wondered if she might have autistic

tendencies. Her ped years ago said no cause she's too verbal. Dunno.

I see some things. Repetitive behavior (socks especially and small

toys); noises when she's not talking. And she is completely blown

away by change. Very resistant to change. She has a lot of health

problems. She has " undiagnosed autoimmune disease " ; erythromelalgia;

hypothrydroidism (autoimmune kind); asthma, " arthropathy associated

with DS (i think that's part of the undiagnosed thing) and severe

allergies. She's very sweet and very sociable once she gets to know a

person. She's also very hard-headed. She's a delightful child in many

ways.

Anyway....I've found more commonality with parents of kids with

autism than those with DS alone so that's why I'm here. The specific

problem I'm having with is related to potty training. She's

not. She's shown all the readiness signs for years. I've tried many

many different programs. Books, videos, etc. She'll go thru the

toileting process from start to finish and with ease but won't

actually make a deposit. She insists she's scared. I don't know why.

She doesn't mind sitting on the potty, she doesn't seem scared or

upset, but when I ask her to please tinkle she says, 'i can't its

scary'. She's been cathed numerous times and I've often wondered if

that doesn't have something to do with her reluctance. It terrifies

her every time they do it. Dunno. I'm truly at a loss. This really

concerns me because she retains urine and bowel..she stays dry thru

the night and only pees once a day and then she floods. I've had her

checked and there is nothing physically wrong with her. She actually

held her urine for more than 24 hours last week. Her doctor says it

has nothing to do with DS...some kids are just very stubborn about

using the toilet, even typical kids and he didn't seem concerned. But

she's 8 years old. And it can't be healthy for her to hold it and

only go once a day. Sorry to go on and on..I'm hoping some of you

can relate to what we're experiencing. Thanks in advance for any

advice you can share. Nicki

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July 17, 2002

Thanks Gail. I've been reading some of the recent posts. Can you tell me what

ABA is? Thanks, Nicki

smilinggail@... wrote: In a message dated 7/16/02 9:33:55 AM Pacific

Daylight Time,

eleanor7694@... writes:

<< Hi Everyone, my name is Nicki, mom to Eleanor.

just turned 8 yrs old. >>

Hi Nicki, and welcome. I have not been through the potty training stage yet,

so I hope you can work this out so you can help me when we get to that point!

LOL Glad you found the list.

Gail :-)

Gail-Mom to Seth 6 ds/asd/pica, jo 9 the gymnast, 11 the pianist,

25 beautiful but a pain, Jen 26 the wallet breaker, Grandma to Errick 6

ALL boy and wife to , my hero.

July 17, 2002

Hi Nicki and Pam,

My name is Lynn and my daughter is sixteen with Down and autism, the

autism part I just had diagnosed this spring. I live in burg,

Pa. Jenna has high blood pressure, hypothryoid, hearing loss and

seems to get ill frequently.

Jenna goes to a nephlogist for her blood pressure. Somehow everyone

is suprised that you can have Down Syndrome low thryoid and

hypertension. Jenna had a kidney scan which was good, and has been

potty trained for some years. I did the videos, " once upon a potty

for girls " was able to rent from library, also blockbuster. She would

sit and read the book over and over, and sang a very silly song, from

the video. It worked great for Jenna. Also my son has autism, he was

afraid to go in the potty, I used cloth diapers, you can put them

inside the disposable, it helps them feel wet and its not

comfortable. Then I would put a cloth diaper on the seat of the potty

so the comforting cloth was next to their skin, and let them potty on

top of the diaper. After a few times I laid the diaper into the

potty, it doesn't seem so large and empty then, and they started to

urinate in the potty. Finally we took the cloth diaper away and had

sucess with peeing. It took longer for the B.M. training, I'll tell

about that another day.

It is concerning that she pees only once a day. Do have them run some

test, and maybe they could give her I.V. fluids, if she won't drink

much, to see what is going on.

I know some other tricks too but I will need to tell them another

day, I am being " momm-ed " to death!

Best wishes!

Lynn Grabko

Hi Everyone, my name is

Nicki, mom to Eleanor.

> just turned 8 yrs old. She has DS. is and always has been

> quite verbal but I've often wondered if she might have autistic

> tendencies. Her ped years ago said no cause she's too verbal.

Dunno.

> I see some things. Repetitive behavior (socks especially and small

> toys); noises when she's not talking. And she is completely blown

> away by change. Very resistant to change. She has a lot of health

> problems. She has " undiagnosed autoimmune disease " ;

erythromelalgia;

> hypothrydroidism (autoimmune kind); asthma, " arthropathy associated

> with DS (i think that's part of the undiagnosed thing) and severe

> allergies. She's very sweet and very sociable once she gets to know

a

> person. She's also very hard-headed. She's a delightful child in

many

> ways.

> Anyway....I've found more commonality with parents of kids with

> autism than those with DS alone so that's why I'm here. The

specific

> problem I'm having with is related to potty training.

She's

> not. She's shown all the readiness signs for years. I've tried many

> many different programs. Books, videos, etc. She'll go thru the

> toileting process from start to finish and with ease but won't

> actually make a deposit. She insists she's scared. I don't know

why.

> She doesn't mind sitting on the potty, she doesn't seem scared or

> upset, but when I ask her to please tinkle she says, 'i can't its

> scary'. She's been cathed numerous times and I've often wondered if

> that doesn't have something to do with her reluctance. It terrifies

> her every time they do it. Dunno. I'm truly at a loss. This really

> concerns me because she retains urine and bowel..she stays dry thru

> the night and only pees once a day and then she floods. I've had

her

> checked and there is nothing physically wrong with her. She

actually

> held her urine for more than 24 hours last week. Her doctor says it

> has nothing to do with DS...some kids are just very stubborn about

> using the toilet, even typical kids and he didn't seem concerned.

But

> she's 8 years old. And it can't be healthy for her to hold it and

> only go once a day. Sorry to go on and on..I'm hoping some of you

> can relate to what we're experiencing. Thanks in advance for any

> advice you can share. Nicki

>

> --------------------------------------------------

> Checkout our homepage for information, bookmarks, and

photos of our kids. Share favorite bookmarks, ideas, and other

information by including them. Don't forget, messages are a permanent

record of the archives for our list. ds-

autism

> --------------------------------------------

>

July 17, 2002

Welcome Nicki:

We too had years of ????? with doc's telling us anything under the sun but

Autism. Finally, I got hold of the ASD check list off the internet and

confirmed what I believed - Elie was 10 by this time. He was 12 before we

got a doc who also saw the ASD beyond the DS and the MR. Verbal is not an

issue - Elie is not considered to be very verbal. But the words I heard

over and over is that 1. DS Kids are hard headed. 2. He is too retarded

to be toilet trained 3. Mothers - they always think their kid has

something exotic.

Elie was about 13 or 14 until he was reliably trained during the day. He

had encopresis until 15. Now at 17!!! he is clean 99 44/100 %. It took a

very looooong time.

As to kids who hold back - I have worked with a number of kids with behavior

issues - not MR who have this issue. The same thing that works for many of

us worked for them - a reward that is wanted badly enough to " give away "

their urine or stool. It is a gift that they can control. Control is very

important to people. What else can your daughter control??

Welcome.

Sara, mother to Elie, the 17 yo MAN-Child

----Original Message Follows----

From: " CK " <ckc@...>

Reply-

< >

Subject: Re: Hi. Need Advice, please

Date: Tue, 16 Jul 2002 12:54:40 -0400

Hi Nicki, and welcome.

We spent years trying to get Ian's autism diagnosed because he was so

verbal. One expert told us early in our time seeing her that he was

definitely not autistic, but after seeing him for 2 months, she apologized

and said yes, he was. It's just that she'd been working with

uncommunicative children. Ian meets eye contact, he initiates

conversations, he tells stories, he asks questions. His autism doesn't lie

in communication, but in other things. If you feel that has

autistic tendencies, trust yourself. Work with her as if you've heard the

diagnosis. Eventually someone will see it too. It took us 5 years to go

from getting a pat-pat-pat on the hysterical mother's hand to a diagnosis.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

Sara - Choose to make lemonade, not complain about the lemons.

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

July 18, 2002

Nicki, welcome to the list. As for the potty training, Gabby is not yet potty

trained, more like schedule trained and even lately, not even that. She has been

more successful than I thought she would be when we first tried about a yr ago.

She will bring us a pecs symbol for potty and then go! Unless of course her

movies are on, then forget about it! She has never shown any fear of going so I

cannot help you there. Just wanted to let you know that I have heard that it can

be a long process, esp. in the case of ds-asd.

As for wondering if your daughter is autistic... I always say mother's intuition

is always best. However, for me it was pre-school teachers. I was confused back

when Gabby began developing all the things that ended up being autism... I

somehow didn't even put together that the two could co-exist until her teacher

came around and noticed some of the same similarities she had with her own

autistic son. I thank God this teacher came around when she did.... moved here

(CA) right from AZ.... and I sometimes think to myself that God sent her our

way... like an angel of sorts. Anyway, I always go off in tangents! My point is,

if you suspect, it is worth it to get it checked out. There are many

interventions that can help if she does have autism. It was a bit of a relief

when we found out actually.

Good luck!

Sandy

mom to Gabby (6, ds-asd) and Adam (2)

rickvargas1@...

Re: Hi. Need Advice, please

Hi Nicki and WELCOME.

My name is Pam and I am mom to Hannah (DS) and (DSand ASD). They are

identical twins and the love of my life. They just turned 7.It took me a while

to get the DX of Autism for . She is some what verbal. She still isn't

potty trained and is jsut now starting to show any interest or understanding of

the matter. She puts her hands in her poop and doesn't understand she shouldn't

do that. Her sister is day time potty trained.

I noticed a big difference in the two of them and that is how I knew

had autistic traits. I probably wouldn't have noticed if it wasn't for that.

I don't know what to tell you about the holding the pee thing. Have you gotten

a second or third opinion? I would definitely take to a specialist.

Have you taken her to a child pshycologist to get the dx for autism? That is

what I had to do. The peds. would tell me she had more of the Downs in her than

Hannah but I knew better. So I took her to a child develpment center. It was

obvious to them.

Good Luck!!!!! Welcome again!! You will fall in love with everyone here!

eleanor7694 <eleanor7694@...> wrote: Hi Everyone, my name is Nicki,

mom to Eleanor.