new member from Canada

[Guest guest]

,

When I started reading your post I thought you were describing my daughter,

Trisha. :-) The only difference is that Trisha's doctor thinks the schools

aren't challenging Trisha enough and that is why she is low functioning. H e

believes if they worked more on her academic skills as well as her daily

living skills she would be less prone to having a poop party etc. He

believes that some of her behaviors are due to low challenging IEP's . She

is also considered non-verbal but yet if you listen to her very carefully the

grunting noises (as the school refers to them) are actually her trying to

communicate. The other day she was making a sound that I couldn't at first

make out, but then she pointed and pulled until she got me to where she was

talking about and the sound she was trying to make was stairs. What was

throwing me off was she was using the beginning sound of stair and adding the

word up all together. Once I realized that, it opened a whole new world for

us, now we listen very closely to the sounds watch the movement of her hands

and see where she leads us, once you put all that together you can start

making a little sense out of the so-called noise. I admit it's a little

extra work and it's like going on a treasure hunt trying to figure out what

she is saying but oh what a treasure when we do figure it out. I must admit

I " m still stumped on most of her sounds but we have figured out two new

sounds and what they stand for. So now I can tell the school, she does

communicate you just got to learn the language! lol

[Guest guest]

Hi Everyone

My name is & I'm from Waterloo, Ontario Canada (near Toronto). I've

been " lurking " since November & have thoroughly enjoyed reading all the posts &

realizing that I'm not alone & that there are other families going through the

same struggles as we are. We have 2 daughters, , 13 & ,7.

has D.S. with many autistic tendancies. We think she is more autistic

than she is Downs, but it's a long story. We've always known that Steph was at

the low end of the scale for D.S. (we've been very active in parent support

groups, etc.), but when she started school, it was suggested that she might have

autism as well. So, we had her tested (by a paediatric psychiatrist) with a

negative result. It was agreed that she had autistic tendancies, but the

assessment indicated that because the behaviours were consistant with her

developmental age (about 18mos.-2yrs.), she was simply a " low-fuctioning " child

with D.S. - not autistic. A few wks. after this assessment, got

leukemia. She was 6. I was 6 mos. pregnant with our 2nd child! The next 3

yrs. were spent immersed in chemotherapy & our main focus was keeping her alive

(everything else paled!). She has now been in remission for 4 yrs., thank God!

is pretty much non-verbal. She has about 6 words & a few other

vocalizations. We have been signing with her for many yrs. & there are about 12

signs that she understands & uses hand over hand. She uses 2 or 3 independently

(eat, toilet & more). Steph loves music, has private music therapy 1x/wk.,

private swimming & speech therapy 2x/mo.(this is more communication therapy-

making choices, signing, following directions, etc. We moved here from Toronto

so that Steph would be in a totally integrated school system. She's been there

for 9 yrs. now & she has been a loved, accepted & cared-for member of the school

community, but she hasn't been challenged the way we had hoped. I'm now looking

at all the options for high school & it breaks my heart to think that we may

have to move her from the Catholic system to the Public to get the services that

she needs. has many sensory issues. She mouths everything, has pica

tendencies, the shoes-off thing (we've been battling with this for 9 yrs.

treating it as a behaviour when now I see that it's due to a real need she has

to get stimulation on the bottoms of her feet.) I think it was Leah who said

that Ashton gets times during her school day to be barefoot & rub her feet on

different little carpets with diff. textures. I remember you saying that Ashton

particularly likes the green outdoor carpet one. This makes so much sense to

me, but my school would think I was crazy if I suggested it. In all this time,

has never been seen by an O.T. Oh, when she had leukemia, we got one

to help us with feeding & toiletting issues, but that was it. Now that I'm

learning all about Sensory Integration, we've requested an O.T. assessment from

the school, but the waiting list is 6mos. or more! is not completely

toilet trained yet. We call her schedule trained. If we take her every 2 hrs.,

she will void in the toilet & stay dry (B.M.'s, too). She wears a pull-up

(thank God for XL Goodnights) & still has accidents. is aggressive to

herself & others. She pinches & scratches, many times unprovoked. Sometimes

it's with deliberate intent, but often not. Her behaviour is very

person-specific. We have a respite worker (gov't grant) 8 hrs./wk. who has

been with us for 5 yrs. & is wonderful! loves her & behaves much

better for her than for us . Her behaviour at school is up & down - some good

days, some bad. It's so hard to give you an accurate picture of Steph in a few

sentences. I know this post is getting long, so I'll try to wrap up. Steph

began to menstruate last Mar. & so far it hasn't been an issue. We have to make

sure she wears overalls that week so that it's harder for her to strip (a

favourite activity). I want to share 1 great advancement. Back around Nov.

Steph started to go upstairs herself when she needed to use to bathroom. We

would follow behind to help her take off her pants, etc. Well, she signed

toilet one day & went up. I didn't get up there for about 5 min. & as I climbed

the stairs I could smell poop. I ran & found her naked from the waste down

sitting on her sister's bed. There was no sign of poop, so I quickly dragged

her into the bathrm. & there to my great joy I found the poop in the toilet! She

had chosen to sit on the toilet when she had the choice to have a poop party!

Please excuse me for being so graphic on my 1st post, but since then S. has done

this 5 or 6 x's!

Thank you to all of you for giving me hope, joy & lots of laughs. I've

cried & laughed with you all many times. Leah, your sense of humour is

wonderful! I loved the fart story! Gail, Donna & Joan you are all so wise. I

don't mean to leave anyone out. I think I've learned a lot from all of you.

Terry, your posts have been very meaningful since is the same age as

. I look forward to corresponding with all of you. I need to warn you

that I am very much a novice at the computer. I need to learn some short forms.

LOL is laughing out loud, right? What is IMAO & is DH dear husband? My husband

is a great Dad & very supportive. Oh, by the way, we are re-visiting the dx of

autism. Our paediatrician has agreed to refer us to a developmental

paediatrician this time, although he (our Dr.) still keeps saying she's simply a

very low-functioning D.! Tell me, how do you answer a particlar post? I get

the Digest version of the list. How do you highlight certain parts of someone's

mess.? You're all so patient & understanding, I'm sure I'll learn with time.

Oh, S. loves to bang doors & windows. I'm afraid she'll put her hand thru 1

someday! Thanks for listening. Fondly,

[Guest guest]

In a message dated 1/22/01 4:30:38 PM Eastern Standard Time,

burnett@... writes:

<< Thank you to all of you for giving me hope, joy & lots of laughs. I've

cried & laughed with you all many times. Leah, your sense of humour is

wonderful! I loved the fart story! Gail, Donna & Joan you are all so wise.

>>

Welcome !!!

Hey, no one has ever called me wise before! LOL (laughing out loud) Not

even my dh (dear husband). I like you!!! :-) (smile) Sounds to me like

is doing very well. I'm sure with all the experience you have had

with her will be of a great asset to this list. I'm sure you have a great

sense of humor to have made it this far and will write a few post that will

make us all LMAO (laughing my --arm or any other body part that starts with

a-- off). Oh, FYI (for your information), IMHO means in my humble opinion.

Took me months to figure that one out! LOL Hope you enjoy the list as much

as I do and that we can share great stories and lots of info.

Gail

Gail, Mom to; Seth-4 DS/ASD/PDD/PICA, jo-8, Becky-10, -23, Jen-25,

Grandma to Errick-4

and wife to -my hero

[Guest guest]

In a message dated 1/22/01 7:13:20 PM Eastern Standard Time,

Csvillars@... writes:

<< I admit it's a little

extra work and it's like going on a treasure hunt trying to figure out what

she is saying but oh what a treasure when we do figure it out. I must admit

I " m still stumped on most of her sounds but we have figured out two new

sounds and what they stand for. So now I can tell the school, she does

communicate you just got to learn the language! lol

>>

Carol,

Wow, that's great! Good listening award goes to you! Good speaking award to

Trisha. :-) And these teachers think they know more than us Moms!!!!!!!

Makes you wonder, just how much more do our kids know than they are given

credit for? What an uplifting post.

Gail

[Guest guest]

Thanks, when we finish learning the rest of her language we hope to get the

Golden Speech Award! lol

Carol

[Guest guest]

Hi !

Welcome! You mentioned that likes to bang on windows....have you

tried either covering or replacing them with plexiglass? We did that in a

travel trailer that we use for camping and plan to use it in 's

bedroom as well. It's great. He can bang on it all he wants and it won't

break! I look forward to hearing more from you...

Terry

Mom to , almost 14!

[Guest guest]

In a message dated 1/22/01 4:30:42 PM Eastern Standard Time,

burnett@... writes:

<< Our paediatrician has agreed to refer us to a developmental paediatrician

this time, although he (our Dr.) still keeps saying she's simply a very

low-functioning D.! Tell me, how do you answer a particlar post? I get the

Digest version of the list. How do you highlight certain parts of someone's

mess.? >>

Hi ,

Welcome to the group!!!! Sounds like you sure had a rough time. Gang,

is this the first of our kids to have leukemia on this list??? You are ahead

of a lot of us and can probably help US!!!! I am TERRIFIED of menses with

Maddie. We still have plenty of time, but UGH!!!!!

If you ever have any questions on sensory integration, feel free to ask me.

Maddie had private SI therapy every week for 3 years, and from someone I feel

is the best there is. We also did Floortime for a number of years and now

ABA.

And to crop just a bit of the message, just drag your cursor along the parts

you want and hit reply.

Looking forward to hearing more from you !!!!!

{{{{{{{{{{{hugs}}}}}}}}}}}}

Donna

P.S. , before you go to the developmental ped, bring as much

information on the dual dx as you can. Bring Joan's Disability Solutions and

all the data that you can find. Go in armed!!

[Guest guest]

terry, great idea about the plexiglass...i would have never thought of

that....thanks for \sharing.......also valerie welcome to you and

stephanie.....i am sure you will laugh, cry, and rejoice with the rest of

us...... we are a great group, although one of us is really crazy,that being

me....welcome....leah-mom to ashton-9ds-pp, and cameron 5 full of pee and

vinegar....hehehe

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

At 10:04 AM 1/23/01 EST, you wrote:

>In a message dated 1/22/01 4:30:42 PM Eastern Standard Time,

>burnett@... writes:

>

><< Our paediatrician has agreed to refer us to a developmental

paediatrician

>this time, although he (our Dr.) still keeps saying she's simply a very

>low-functioning D.! Tell me, how do you answer a particlar post? I get the

>Digest version of the list. How do you highlight certain parts of someone's

>mess.? >>

Here's what you ask him:

I'm aware that prior to 1995 there was very little literature about Down

syndrome and autism. The believe was that the two could not exist together.

However, since 1995, there is a body of literature that suggests that

children and adults with Down syndorme can also have psychiatric conditions

including depression, ADHD, and autistic spectrum disorders. Without doing

the appropriate screening took, such as a GARS, we won't know if he tests

within teh autism spectrum. We would like to complete this test so that we

can know without a doubt if he does or does not. And if he does test within

the range of autistic spectrum, then he does indeed have this disorder.

before you go, you download the issue of " Disability Solutions " on Down

syndrome and autism, and all the articles Glenn Vatter gathered on the

incidence of Down syndrome and autism . YOu copy these, and hand your

pediatrician the copies.

Ask him what he has to lose by going through the GARS with your child. The

only risk is that he'll have autism. The benefit is that you, his parents,

will be able to stop questioning, one way or another, and move forward. All

you want is appropriate services and inetervention strategies for your

child. Is that so much to ask?

I don't know how any physician of any kind would deny you with this

argument. AFterall, they're to " first do no harm, " and by denying you

information or the ability to rule something out that you suspect, he is

harming the environment the child lives in....in my opinion, that is.

Joan

[Guest guest]

Hi ,

I'm glad that you joined the list. I hope that you learn, and you be

educated, etc. from this e-mail group. Um I'm 19 years old female, in

McKinney, TX. I've been babysitting autistic children for about a year now,

and have co uped in an autistic classroom my last year of high school from

99- to 2000. I'm a college student now majoring in early childhood

education. I think Marla has a son who's 18 that's autistic that's close to

's age. I've been babysitting 12 year old autistic twin boys

that's close to 's age, so if you have any questions please feel

free to ask. I was developmental delayed also, that's why I have a learning

disibilility.

From,

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

hi valerie and stephanie, dont worry about the computer stuff you will catch

on quickly! Its great to have another member wow! three this week! cant wait

to hear more from you. shawna, mom to nathan 9yrs w/ds/pdd/add/hd and

nicholas 8yrs, wife to Geoff ten years next month wahoo!

>From: " Gordon Burnett " <burnett@...>

>Reply-egroups

><egroups>

>Subject: Re: New Member from Canada

>Date: Mon, 22 Jan 2001 15:59:57 -0500

>

>Hi Everyone

> My name is & I'm from Waterloo, Ontario Canada (near Toronto).

>I've been " lurking " since November & have thoroughly enjoyed reading all

>the posts & realizing that I'm not alone & that there are other families

>going through the same struggles as we are. We have 2 daughters,

>, 13 & ,7. has D.S. with many autistic tendancies.

> We think she is more autistic than she is Downs, but it's a long story.

>We've always known that Steph was at the low end of the scale for D.S.

>(we've been very active in parent support groups, etc.), but when she

>started school, it was suggested that she might have autism as well. So,

>we had her tested (by a paediatric psychiatrist) with a negative result.

>It was agreed that she had autistic tendancies, but the assessment

>indicated that because the behaviours were consistant with her

>developmental age (about 18mos.-2yrs.), she was simply a " low-fuctioning "

>child with D.S. - not autistic. A few wks. after this assessment,

> got leukemia. She was 6. I was 6 mos. pregnant with our 2nd

>child! The next 3 yrs. were spent immersed in chemotherapy & our main

>focus was keeping her alive (everything else paled!). She has now been in

>remission for 4 yrs., thank God! is pretty much non-verbal. She

>has about 6 words & a few other vocalizations. We have been signing with

>her for many yrs. & there are about 12 signs that she understands & uses

>hand over hand. She uses 2 or 3 independently (eat, toilet & more). Steph

>loves music, has private music therapy 1x/wk., private swimming & speech

>therapy 2x/mo.(this is more communication therapy- making choices, signing,

>following directions, etc. We moved here from Toronto so that Steph would

>be in a totally integrated school system. She's been there for 9 yrs. now

> & she has been a loved, accepted & cared-for member of the school

>community, but she hasn't been challenged the way we had hoped. I'm now

>looking at all the options for high school & it breaks my heart to think

>that we may have to move her from the Catholic system to the Public to get

>the services that she needs. has many sensory issues. She

>mouths everything, has pica tendencies, the shoes-off thing (we've been

>battling with this for 9 yrs. treating it as a behaviour when now I see

>that it's due to a real need she has to get stimulation on the bottoms of

>her feet.) I think it was Leah who said that Ashton gets times during her

>school day to be barefoot & rub her feet on different little carpets with

>diff. textures. I remember you saying that Ashton particularly likes the

>green outdoor carpet one. This makes so much sense to me, but my school

>would think I was crazy if I suggested it. In all this time, has

>never been seen by an O.T. Oh, when she had leukemia, we got one to help us

>with feeding & toiletting issues, but that was it. Now that I'm learning

>all about Sensory Integration, we've requested an O.T. assessment from the

>school, but the waiting list is 6mos. or more! is not completely

>toilet trained yet. We call her schedule trained. If we take her every 2

>hrs., she will void in the toilet & stay dry (B.M.'s, too). She wears a

>pull-up (thank God for XL Goodnights) & still has accidents. is

>aggressive to herself & others. She pinches & scratches, many times

>unprovoked. Sometimes it's with deliberate intent, but often not. Her

>behaviour is very person-specific. We have a respite worker (gov't grant)

>8 hrs./wk. who has been with us for 5 yrs. & is wonderful!

>loves her & behaves much better for her than for us . Her behaviour at

>school is up & down - some good days, some bad. It's so hard to give you

>an accurate picture of Steph in a few sentences. I know this post is

>getting long, so I'll try to wrap up. Steph began to menstruate last Mar.

> & so far it hasn't been an issue. We have to make sure she wears overalls

>that week so that it's harder for her to strip (a favourite activity). I

>want to share 1 great advancement. Back around Nov. Steph started to go

>upstairs herself when she needed to use to bathroom. We would follow behind

>to help her take off her pants, etc. Well, she signed toilet one day &

>went up. I didn't get up there for about 5 min. & as I climbed the stairs

>I could smell poop. I ran & found her naked from the waste down sitting on

>her sister's bed. There was no sign of poop, so I quickly dragged her into

>the bathrm. & there to my great joy I found the poop in the toilet! She had

>chosen to sit on the toilet when she had the choice to have a poop party!

>Please excuse me for being so graphic on my 1st post, but since then S. has

>done this 5 or 6 x's!

> Thank you to all of you for giving me hope, joy & lots of laughs.

>I've cried & laughed with you all many times. Leah, your sense of humour

>is wonderful! I loved the fart story! Gail, Donna & Joan you are all so

>wise. I don't mean to leave anyone out. I think I've learned a lot from

>all of you. Terry, your posts have been very meaningful since is

>the same age as . I look forward to corresponding with all of

>you. I need to warn you that I am very much a novice at the computer. I

>need to learn some short forms. LOL is laughing out loud, right? What is

>IMAO & is DH dear husband? My husband is a great Dad & very supportive.

>Oh, by the way, we are re-visiting the dx of autism. Our paediatrician has

>agreed to refer us to a developmental paediatrician this time, although he

>(our Dr.) still keeps saying she's simply a very low-functioning D.! Tell

>me, how do you answer a particlar post? I get the Digest version of the

>list. How do you highlight certain parts of someone's mess.? You're all

>so patient & understanding, I'm sure I'll learn with time. Oh, S. loves to

>bang doors & windows. I'm afraid she'll put her hand thru 1 someday!

>Thanks for listening. Fondly,

>

>

>

>

>

>

>

>

>

[Guest guest]

>

>

> Could anyone furnish me with some information on LDN and how to get

it in Canada. Thank-you.

s Pharma in Toronto is a compounding pharma and has been my

source for about 14 months. I know a Doc in Burlignton but suggest you

call s for lead on Doc near you.

Best

Alan

[Guest guest]

Sheldon, if no one suggests a specific doctor, you might try calling a

compounding pharmacy and asking them.