Re: Re: New Member intoduction

[Guest guest]

In a message dated 7/14/2006 12:04:01 P.M. Eastern Standard Time,

donnellkenworthy@... writes:

One of our big challenges is DJ's education. I believe they are not

challenging him, they are not following through when making requests of him,

and they

are letting him get up and go off by himself to self-stim. way too often (up

to 20 minutes when I am in the class to observe). He is not agressive or

self-injurious like some of the other students in his Severely Disabled SDC, so

I think he just doesn't demand attention -he is forgotten. The aides will

say, " Well, DJ just doesn't want to do this task... " and just let him wander

off to self-stim. DJ has a nurse that accompanies him to school as he has

several medical issues requiring a nurse with him, but the school tends to let

the

nurse take care of him all day.

boy this brought back memories! Been there, done that! Did it for many

years before getting Trisha in private school. I also heard on top of what you

already mentioned that Trisha was stubborn and just didn't want to talk or

learn but that she could if she wanted to. As for the getting up from the

table and wondering off, she did that all the time and when I would question

them got the identical same answer you have gotten. When I was in the room I

would go get her and bring her back and of course then she would cry and the

teacher would say that crying wasn't good for the other students and let her go

again which is why we have such a hard time getting her to do anything

resembling work now. The autism school she attends now is working on that and

making decent progress and she has shown this year that she can learn and can

make progress when you meet her individual needs to help her learn. Oh and as

for not challenging her enough they never did because they went by the old

school that DS kids can't learn. Her pediatrician even went to several of our

IEP's and told them she was bored that they were not challenging her enough.

You have to remember that there are all degrees of autism and each child is

different in the way they act or interact so you can't go by just that to

decide if they do or do not have Autism. She is loving to me and hugs and

kisses all the time and for the most part looks at me but that is because for

years I have always when talking to her have reminded her to look at me. When

the special ed director from the public school saw Trisha at the autism school

she was shocked at how well she fit in there. She made the comment that you

could really see the autistic traits when she was around other students with

autism. There were two students with DS in her public school and she was

nothing like them other than a few facial features that were similar.

PS. Welcome to the group! :-)

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

Hi Donnell,

My name is Viola , I have 3 children Tammy who is 22, Tania who is 19 and

who is 14 has DS AND PDD (nos)., did not get is dx of pdd nos until

the age of 11 and did not start having autistic traits until the age of 9.,

did not fit all of the criteria for autism but had some therefore the dx

of

PDD (nos), also looks at me and is affectionate. I would pursue it

with another just to get the right stuff at school. For instance more speech

and ot time etc. :

Dear Ones-

I have been looking in on the conversations for a few weeks now but have not

felt ready to enter in until now. I am a parent of 5, four typically

developing girls and one fantastic, son, DJ, who has DS. DJ has many autistic

behaviors and so we requested and got an evaluation from a psych. with our

local

regional center. He agreed that DJ has many autistic behaviors, but he said it

is just because he is mod. to severely retarded. I am not sure if I should

leave things at that or pursue a different evaluation.

I got the impression when we were with this psych. (3 hours of eval. where

he interacted with my son once-mostly talked to me) that he was not really

comfortable with this dual diagnosis. He never said he wasn't comfortable, just

my impression.

One of our big challenges is DJ's education. I believe they are not

challenging him, they are not following through when making requests of him,

and they

are letting him get up and go off by himself to self-stim. way too often (up

to 20 minutes when I am in the class to observe). He is not agressive or

self-injurious like some of the other students in his Severely Disabled SDC, so

I think he just doesn't demand attention -he is forgotten. The aides will

say, " Well, DJ just doesn't want to do this task... " and just let him wander

off

to self-stim. DJ has a nurse that accompanies him to school as he has

several medical issues requiring a nurse with him, but the school tends to let

the

nurse take care of him all day.

I really don't have anyone else to compare DJ to. I sometimes wonder if I

could compare DJ's behaviors with someone with the dual diagnosis, or the

parent of a child with the dual diagnosis of DS/ASD could meet my DJ, then I

would

have more confidence to pursue a different evaluation. The psychologist did

say that DJ is affectionate and does look at me and his nurse, but that DJ

does have many autistic behaviors...I

Anyone care to comment?

Donnell

[Guest guest]

Welcome to the ds-auatism list. I am not sure how the health/education

system works in UK, but my suggestion would be to find a developmental

pediatrician and or an educational psychologist to evaluate your son.

My son, now 21 was not dx until he was 12. YEars of frustration because he

was not being educated in a way that he could learn and his behavior

worsened daily. BUT he always is affectionaate - short-term. HE does

establish eye contact but usually it is aimed at nose or mouth rather than

eyes. He still wiggles things in his range of vision - soft " babies " ,

fixates on videaos, has many perseverative speecjh patterns.

You can find on the web check lists for Autism Spectrum Disorder. Try those

to see what you think about your son's behavior.

There are people on this list from AU and UK as well as Ca. Hope they will

identify themselves to you.

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

>

>Reply-To:

>To:

>Subject: Re: New Member intoduction

>Date: Fri, 14 Jul 2006 16:42:17 -0000

>

>Hello Donnell,

>

>I am brand new to this list too and struggling a little with the format! -

>I am very

>interested in your post as it could describe my situation with Keir, my 4

>and a half year old

>with ds and what I feel are autistic traits. I am just plucking up the

>courage to request an

>investigation by his educational psychologist. No-one else apart from a

>friend of mine

>with some knowledge in this field has mentioned 'autism' in relation to

>keir but he is

>spending increasing amounts of time self-stimulating with his rag dolls -

>and anything

>else that he can wiggle in front of his eyes - and there are various other

>things that are

>causing me concern.

>

>It seems to me that there may be some differences in approach to the

>diagnosis of ASD

>where children with ds are concerned. In particular with regard to the

>business of some

>children having no problem with eye contact and affectionate relating with

>family/friends.

>Keir is certainly very good with eye contact on the whole - when you can

>get his attention

>away from his rag dolls or his videos! I met a boy of 6 the other day who

>does not have ds

>but has another rare syndrome and has just been diagnosed after a year of

>careful

>investigation with ASD. He is the friendliest child you could meet! Anyway

>- I have found

>my way to this site and am logging in regularly to measure what I read

>against my

>situation.

>

>I used to visit a site called downsyn.com alot which I loved. I moved areas

>last year ( I live

>in the UK and moved from England to Scotland) and sort of lost the habit

>while all the

>disruption was going on.

>

>hello to all others on the list - looks like you have got a really friendly

>community here.

>Seems very american based- any other nationalities out there?!

>

>thanks,

>

>

>

>

>

> >

> > Dear Ones-

> >

> > I have been looking in on the conversations for a few weeks now but

>have not felt

>ready to enter in until now. I am a parent of 5, four typically developing

>girls and one

>fantastic, son, DJ, who has DS. DJ has many autistic behaviors and so we

>requested and

>got an evaluation from a psych. with our local regional center. He agreed

>that DJ has

>many autistic behaviors, but he said it is just because he is mod. to

>severely retarded. I

>am not sure if I should leave things at that or pursue a different

>evaluation.

> >

> > I got the impression when we were with this psych. (3 hours of eval.

>where he

>interacted with my son once-mostly talked to me) that he was not really

>comfortable with

>this dual diagnosis. He never said he wasn't comfortable, just my

>impression.

> >

> > One of our big challenges is DJ's education. I believe they are not

>challenging him,

>they are not following through when making requests of him, and they are

>letting him get

>up and go off by himself to self-stim. way too often (up to 20 minutes when

>I am in the

>class to observe). He is not agressive or self-injurious like some of the

>other students in

>his Severely Disabled SDC, so I think he just doesn't demand attention -he

>is forgotten.

>The aides will say, " Well, DJ just doesn't want to do this task... " and

>just let him wander off

>to self-stim. DJ has a nurse that accompanies him to school as he has

>several medical

>issues requiring a nurse with him, but the school tends to let the nurse

>take care of him all

>day.

> >

> > I really don't have anyone else to compare DJ to. I sometimes wonder

>if I could

>compare DJ's behaviors with someone with the dual diagnosis, or the parent

>of a child with

>the dual diagnosis of DS/ASD could meet my DJ, then I would have more

>confidence to

>pursue a different evaluation. The psychologist did say that DJ is

>affectionate and does

>look at me and his nurse, but that DJ does have many autistic behaviors....

> >

> > Anyone care to comment?

> >

> > Donnell

> >

> >

> >

[Guest guest]

http://www.altonweb.com/cs/downsyndrome/index.htm

go to medical series, autism PDD, then comorbity and diagnosing....all the

articles about DS and Autism will help separate the diagnosis for " regular " DS

and DS with Autism

Sherry

[Guest guest]

Were I you, I would find another evaluator. One who is willing to divide

the time, get to know your child. And then evaluate HIM, not the

informaation you give him. I find that to be more likely with a

developmental pediatrician than a psych.

Understand - MHO only.

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

>

>Reply-To:

>To:

>Subject: Re: New Member intoduction

>Date: Fri, 14 Jul 2006 08:37:56 -0700 (PDT)

>

>Dear Ones-

>

> I have been looking in on the conversations for a few weeks now but have

>not felt ready to enter in until now. I am a parent of 5, four typically

>developing girls and one fantastic, son, DJ, who has DS. DJ has many

>autistic behaviors and so we requested and got an evaluation from a psych.

>with our local regional center. He agreed that DJ has many autistic

>behaviors, but he said it is just because he is mod. to severely retarded.

>I am not sure if I should leave things at that or pursue a different

>evaluation.

>

> I got the impression when we were with this psych. (3 hours of eval.

>where he interacted with my son once-mostly talked to me) that he was not

>really comfortable with this dual diagnosis. He never said he wasn't

>comfortable, just my impression.

>

> One of our big challenges is DJ's education. I believe they are not

>challenging him, they are not following through when making requests of

>him, and they are letting him get up and go off by himself to self-stim.

>way too often (up to 20 minutes when I am in the class to observe). He is

>not agressive or self-injurious like some of the other students in his

>Severely Disabled SDC, so I think he just doesn't demand attention -he is

>forgotten. The aides will say, " Well, DJ just doesn't want to do this

>task... " and just let him wander off to self-stim. DJ has a nurse that

>accompanies him to school as he has several medical issues requiring a

>nurse with him, but the school tends to let the nurse take care of him all

>day.

>

> I really don't have anyone else to compare DJ to. I sometimes wonder if

>I could compare DJ's behaviors with someone with the dual diagnosis, or the

>parent of a child with the dual diagnosis of DS/ASD could meet my DJ, then

>I would have more confidence to pursue a different evaluation. The

>psychologist did say that DJ is affectionate and does look at me and his

>nurse, but that DJ does have many autistic behaviors....

>

> Anyone care to comment?

>

> Donnell

>

>

>

[Guest guest]

Hello Donnell and ,

My son, , who has DS was diagnosed with PDD-NOS at 2.5 yrs. My husband

and I had suspicions that something was going on at age 2, because he was

developing differently than the other children his age with DS at his

school. We had him evaluated by a local neurodevelopmental pediatrician who

was recommended to us (she said that had mild autism), then a few

months later was seen by Dr. Capone at the Kennedy Krieger

Institute in Baltimore, MD. He confirmed that was on the autistic

spectrum, but gave it a more specific label of PDD-NOS.

It's always good to get a second opinion, especially when it pertains to a

diagnosis. When we saw Dr. Capone, we recorded our visit with him, so that

we could listen to the evaluation details later on

(asking his permission prior to the appt.). I'm so glad that we did, because

I still listen to parts of the tape every so often. There is just too much

information to remember during the consultation.

Also- we brought a list of questions to each appt- this helped to organize

our thoughts prior to meeting with the doctor.

Good luck and definitely follow through with your instincts- if something

doesn't seem quite right, pursue it until you get answers.

Best,

Mom to , 34 mos. DS-PDD/NOS

>

>Reply-To:

>To:

>Subject: Re: New Member intoduction

>Date: Fri, 14 Jul 2006 16:42:17 -0000

>

>Hello Donnell,

>

>I am brand new to this list too and struggling a little with the format! -

>I am very

>interested in your post as it could describe my situation with Keir, my 4

>and a half year old

>with ds and what I feel are autistic traits. I am just plucking up the

>courage to request an

>investigation by his educational psychologist. No-one else apart from a

>friend of mine

>with some knowledge in this field has mentioned 'autism' in relation to

>keir but he is

>spending increasing amounts of time self-stimulating with his rag dolls -

>and anything

>else that he can wiggle in front of his eyes - and there are various other

>things that are

>causing me concern.

>

>It seems to me that there may be some differences in approach to the

>diagnosis of ASD

>where children with ds are concerned. In particular with regard to the

>business of some

>children having no problem with eye contact and affectionate relating with

>family/friends.

>Keir is certainly very good with eye contact on the whole - when you can

>get his attention

>away from his rag dolls or his videos! I met a boy of 6 the other day who

>does not have ds

>but has another rare syndrome and has just been diagnosed after a year of

>careful

>investigation with ASD. He is the friendliest child you could meet! Anyway

>- I have found

>my way to this site and am logging in regularly to measure what I read

>against my

>situation.

>

>I used to visit a site called downsyn.com alot which I loved. I moved areas

>last year ( I live

>in the UK and moved from England to Scotland) and sort of lost the habit

>while all the

>disruption was going on.

>

>hello to all others on the list - looks like you have got a really friendly

>community here.

>Seems very american based- any other nationalities out there?!

>

>thanks,

>

>

>

>

>

> >

> > Dear Ones-

> >

> > I have been looking in on the conversations for a few weeks now but

>have not felt

>ready to enter in until now. I am a parent of 5, four typically developing

>girls and one

>fantastic, son, DJ, who has DS. DJ has many autistic behaviors and so we

>requested and

>got an evaluation from a psych. with our local regional center. He agreed

>that DJ has

>many autistic behaviors, but he said it is just because he is mod. to

>severely retarded. I

>am not sure if I should leave things at that or pursue a different

>evaluation.

> >

> > I got the impression when we were with this psych. (3 hours of eval.

>where he

>interacted with my son once-mostly talked to me) that he was not really

>comfortable with

>this dual diagnosis. He never said he wasn't comfortable, just my

>impression.

> >

> > One of our big challenges is DJ's education. I believe they are not

>challenging him,

>they are not following through when making requests of him, and they are

>letting him get

>up and go off by himself to self-stim. way too often (up to 20 minutes when

>I am in the

>class to observe). He is not agressive or self-injurious like some of the

>other students in

>his Severely Disabled SDC, so I think he just doesn't demand attention -he

>is forgotten.

>The aides will say, " Well, DJ just doesn't want to do this task... " and

>just let him wander off

>to self-stim. DJ has a nurse that accompanies him to school as he has

>several medical

>issues requiring a nurse with him, but the school tends to let the nurse

>take care of him all

>day.

> >

> > I really don't have anyone else to compare DJ to. I sometimes wonder

>if I could

>compare DJ's behaviors with someone with the dual diagnosis, or the parent

>of a child with

>the dual diagnosis of DS/ASD could meet my DJ, then I would have more

>confidence to

>pursue a different evaluation. The psychologist did say that DJ is

>affectionate and does

>look at me and his nurse, but that DJ does have many autistic behaviors....

> >

> > Anyone care to comment?

> >

> > Donnell

> >

> >

> >